janetbates

an intro to the new blog

2011-08-03T20:46:00.000-07:00

Hello

as promised I have started a new blog that is called janet and ken's next adventure

and it is at

http://janetandken.blogspot.com/2011/08/janet-and-ken-bates-first-blog.html

When we were in Oregon, so many friends expressed an interest in keeping up with what we were up to so I thought I had to start a new blog.

TOday being my birthday seemed like a good day to start

much love

Janet

the end of the journey

2011-06-19T07:46:00.000-07:00

Hi Everyone

Well perhaps not so much the end of the journey, but I guess I am feeling more and more confident that I left the endometrial cancer behind a long time ago. With all the superstitions etc, I feel it hard to say cure, because in medicine, you never say never and never say always, and I am fine to look at it from a relative perspective. I am relatively certain I no longer have endometrial cancer.

Has the CT scan a few weeks ago and it was normal and had the CA 125 done this last week and it was 5, almost 2.5 years after my surgery, that is pretty darn reassuring for me.

I am not going to post on this blog anymore, but will begin a new one for those friends from the US who I think just wonder how we are doing. I think I will call it Ken and Janets great adventures, because we DO have some great adventures.

My other problems are still there, and still a problem, but I cannot imagine them being of any interest to anyone anymore.

This has been quite a week for us, on Tuesday the funds came through on our sale of the Eugene house and our Williams Lake house (we have owned the house my parents lived in for the past 22 years) (My mother has gone into a care facility and my father has moved into a mobile home park across from my mother's facility)

We are out of debt for the first time in many many years, and if we do not go too crazy, should have enough to build this house without going into debt again.

We are living in an RV next to where our house is being built and I am sitting here viewing my incredible garden, in total silence, except for the occasional bird........ oh and Rex's occasional bark, remember REX?

Things are not going quite as well as we wanted at work YET, but then again, you have a little more leeway when you are out of debt. Hopefully they will be just fine in a month or so.

We only want to work half time each, making one full time.

We really feel that we are living on the best place on earth. The North side of the Shuswap only has one main road leading to it and it goes all the way up to Seymour Arm, which is about 2 hours north of here.

When you come around the north side of the lake, you cross this one way bridge, and then you are in Scotch Creek, and there is something about crossing that bridge that to me feels like I am home. I never like crossing it going the other way. I really feel home.

Last night we celebrated our older son Dylan's 24th birthday, and had friends of his over. It was so special to be so close to our kids and have a chance to be more involved with their lives.

Last weekend Dylan plumbed our entire house, which was a very special day. I was so proud. He was so methodical about getting all the lines in and out.

Very special situation to be able to see your grown children's work first hand. He is being pretty darn tolerant of my "change of minding".... I decided to add a prep sink, at the last minute.

Although we really thought that having a small house we would never do the house concert thing again, somehow it has turned out that we figure the house WILL be big enough for house concerts. Just how it turned out, so looking forward to getting back into that.

I have dropped back to 2 days a week recently, and feel that that might be perfect for me. I have been working 3 days a week and sometimes I either have a lot of pain, OR am nauseated. I feel that I can get through one day in a row like that, but not 2.

So I will ultimately be working tuesdays and thursdays.

We are leaving for Oregon on July 6th. I have an appt with the cancer agency in Kelowna in the afternoon there, and we will head south that night.

We are performing at the Oregon country Fair, on July 8th 9th and 10th, so if you are there, please come and say hello.

We are then going to Bandon on the 11th, or 12th, and performing at Bullards Beach amphitheater on July the 13th at 6:30, and then at brewed awakenings in Bandon on July 15th, at 6:30 (I think)...or maybe it was 6..? Perhaps check with them

I will post here to let you know what the new blog will be, but for now this will be my last blog.

I have to say that it has meant so much to have someone interested enough in what was going on with me to read my blog. I realize that over the past year or so my blog has little to do with the cancer, but it seemed a way, after we moved away from Bandon, to keep people apprised of our whereabouts.

Now I feel I need to call it something else

Once again thank you and do not hesitate to call me if you have any questions, I will post here to say where the new blog will be, much love

Janet

jankenb @ gmail.com

the house comes up

2011-05-04T07:07:00.000-07:00

Well Ken and I are doing well, we have made some changes to our schedules and it is getting a little bit better. We have been overwhelmed by the work. The town has not had regular doctors )(except one) for some time now and we have been really pressured to see a lot of patients, and we just cannot do that, as we can only work as fast as we can work and when we get behind we are spending the entire evenings working on charts. That is no fun. We realize with this new job we do not have the responsibilities we had when we were running our own clinics, however we also have lost a lot of autonomy, in that we cannot make all the decisions about our work like we did before. There are clearly pros and cons to this employee thing.

We might not last at it, and might end up going out on our own, but we will see.

Our house is going well, and we continue to love where we have bought. Just off the back of the property are miles of trails and I have gotten back to running 3 times a week. Up to 6 miles now.

I have been having a lot more pain lately with almost everything, and so will be having a CT scan in the next few weeks. The oncologist left it up to me, he said that even if we found something (a metastasis) there was nothing we could do about it, so why do the testing. I guess this makes some sense to me, but I guess I feel if I am going to be going out on my own with a clinic, there will be some commitment there and I would like to make sure that all this pain is not from the cancer.

I guess I also wonder if at all possible if this radiation enteritis only affected a small part of the small bowel, if it were to get really bad, if some day I could get it resected. Also not sure if that is possible, but I feel it would be nice to look forward to SOMETHING for this pain ??

The routine is for the first 3 years to get CT scan every 6 months or sooner if there were new symptoms. My last CA 125 was nice and low.

We are currently on our way to Seattle to take Josh to catch his flight to Prague on Sunday morning.

I am quite nervous about this, but also quite excited for him as it is going to be such an experience. He is going on an anthropology course 1 month, studying the gypsies. He then writes a paper on it,. There are 17 of them going. He is doing his paper on the influence of television on the gypsies. I guess even though many of them do not have any modern amenities, they ALL have satellite televisions. Sounds like it could be very interesting. So they watch all the very stupid things people in north america do with their money and lose all persective on reality..... at least their reality.

Last Sunday night one of my “cancer buddies” died. I believe she was 38. She had ovarian cancer. It was diagnosed in 2005 and she had a remission for 4 years, a recurrence in 2009 and then intermittant chemo since then. We became online friends... She was also a musician and I sent her my most recent CD and she was so inspired by me having done a cd (while on chemo), she recorded a CD last summer. (at this time she knew that she was not going to be cured from her disease) She had the most incredible voice, she had 2 small children and wrote a blog almost right until the end. Her husband wrote it right up until the end. They had both prayed that when the time came it would be fast, and she would not suffer, and it did all happen pretty quickly and she had time to spend at home with her children, and if a death could be beautiful, hers was. It was a family experience with the children and her husband reading to her and just spending time. She went into a coma about 4 days before she died.

Another cancer patient, and a musician I know from my house concert series, Anne Feeney, was just diagnosed with brain metastasis. She was diagnosed last summer with small cell cancer of the lung, and underwent chemo and radiation. SHe had opted at the time not to do a form of radiation to the brain that was a low dose form. I guess since so many of those with small cell cancer of the lung, get mets to the brain they do some form of generalized radiation to kill off any cancer cells in the brain. She is now undergoing gamma knife radiation treatments to the tumour in the brain, which are high dose treatments to a very specific area, in fact like surgery without the scalpel. She seems to be doing well as the last I heard, she was off in Oakland , California at a conference, so here’s hoping that the Gamma knife was successful.

Our family has been absolutely devastated this week by an accident our neice has been in in Australia. It was a head on accident in which she seems to have bore most ot the brunt.

She was treated at the scene by a helicopter ambulance crew, with blood transfusions and chest tubes. (apparently she and the other lady injured at the site were the very first patients to revieve blood at the scene, via air ambulance) In the past they have brought blood to the scene, but they have just started carrying blood in the ambulance.

She sustained a serious head injury, and a fracture of the sternum, which caused her lungs to collapse (which is why they put in chest tubes at the scene) She also had internal injuries, fractures of her lower spine, and her femur. My sister and her husband caught a flight on Sunday night midnite to fly to Australia.

It is truly amazing that she survived this accident, but it seems as though she was in the best possible place, she was airlifted to a trauma center that specializes in head injuries. She was placed in a drug induced coma right at the accident scene and they began breathing for her right away.

Since this blog is taking me so long to write (2 weeks thus far), my neice is definately getting better, she had a second surgery 2 days ago to repair a fractured femur and elbow, and though there have been a few concerns post op, she seems to be doing well.

She has an enormous amount of challenges ahead of her, including a few more operations to repair broken bones.

An interesting tidbit about Australia health care. I do not know a lot about their system, but my sister tells me that they have this system whereby all drivers have to renew their licences annually, and the money from this goes towards paying for the costs of motor vehicle accident injuries. So all of her care is paid for, despite that it might be a very long rehab etc. Interesting.

We have just heard that we have been selected for a stage at the ORegon Country Fair.

We will be playing on the Shady Grove Stage at noon on Saturday the 9th of July.

We have been planning this trip since we left, and we will also be performing at Brewed Awakenings on the 15th of July at 6:30 pm, in Bandon. I have been trying to get ahold of Bulllards Beach campground as well, but since our cell phones have changes, we have likely gotten off of their list. (we have been playing there for 4 years now)

Our land is a 1.67 acre lot and it is pie shaped with the small part opening onto a cul de sac.

The large part opens onto the forest at the back.

We have to build the house up front because there is an archaeological covenant preventing us from building at the back. The place the house is sitting is basically on the edge of an ancient creek. (Our street address is Ancient Creek lane.... cool eh?)

so the back part of the house where I am standing to take this photo is almost directly west, and also opens towards the forest.

Well I have been writing this for way too long

Bye for now

Love

Janet

jankenb @ gmail.com

a garden interupted

2011-04-10T10:02:00.000-07:00

Hi everyone.

We are out on our property now, we purchased a Park Model home, which are RVs made more for semipermanent parking. It is an older model 1998, and we got it for less than more RVs cost. It is 36 feet long with 2 slide outs. (These slide outs are the old fashioned kind that you have to slide out by hand, it took Ken and I a day to get them out)

We just came back from my first official run since being in Canada. We just headed off the backside of our property onto a trail that made a 2.5 mile loop, which for me is........ priceless.

Our property is at the end of a culdesac that then goes into a big forest, and I am essentially 2 blocks from the tiny clinic I work at in Scotch Creek. (more on that one later)

I will try to post some pictures later when we get back to Chase.

We still have the rental house in Chase, until the end of May, but we JUST LOVE IT OUT HERE!!!!

I cannot wait until our friends Mark (our drummer) and Linda come to visit us with their dog, we will just be able to head off the back with dogs and NO LEASHES.... priceless.

After the Bandon house sold and we got the money, the US dollar had dropped so far that we were only able to purchase the land, and really have nothing left to build. So we will have to borrow from the bank, just to start the foundation

HOWEVER, anyone who knows my music, the first song on the first cd......... we have a home, we have a garden AND we have a place in the woods...

Guess we do not need much else. I wish I could remember the name of the song, I guess I did not put the first cd on the website......

HERE IN YOUR ARMS on the CD a time has come.....

Gardening, I have found this blog quite useful to go back and find out what I did wrong gardening last summer. I have JUST as many tomato plants maybe more, but I have not yet planted any of them, in fact I have not planted anything in the ground yet. I have a makeshift greenhouse with big lawn chairs and plastic draped over them.

I have already lost most of my basil seedlings, but they had been started too early anyways, so have restarted them.

I have pepper plants and tomato plants up to 4-5 inches spinach, arugula, asparagus, endive.

The area I am in has about an average last frost day about 2 weeks later than Eugene.

Our property is 1.6 acreas and we are on a street that all the other lots are 1 acre. We have one house on our left and another on our right that seem to have owners that are TOTALLY obsessed with mowing their lawns, as well as all the OTHER things that people do with lawns t his time of year, between the two of them there has been a mower going almost all weekend and the guy on the left is just heading out with a gas can.

I am certain we are going to be a big disappointment to the neighborhood. CHAOS!

Our vegetable garden is going to be out by the road, likely bringing down the whole neighborhood.

The guy on the left has already offered to loan us his bobcat (I gather to get our yard in shape to look just like his)

The little clinic I work at, it seems that everyone who comes in is a gardener. One patient I was just showing out of my office one day and in the hallway, he was asking if there are any plants I would like, I said, it would be great to get some Rhubarb starts, if someone is dividing their plants and all of a sudden three people said "I can get you rhubarb", the nurse, someone in the waiting room and the patient I was seeing.

So I have offers of strawberries, raspberries, chives, rhubarb, and a guy down the road has offered us all the apples we want in the fall (he has about 50 trees and nothing to do with them all), have I said how much I love it here????

There is this one thing about the neighborhood I really do not like, one of the guys on the cul de sac has two large flags in his yard and Canadian and American

Ken and I will get our peace flag out there

I HAVE HEALTH CARE INSURANCE! as of April 1st, it is SOO reassuring to know that if something happens we are not going to be destroyed financially. Between my biopsy and my visit to the cancer center, I have spent 800 dollars in the past 2 months. In Canada the amount they charge non residents is exorbitant. At the cancer center they were going to charge me 1050 dollars just to see the doctor, until I showed them my passport, and proof that I was on waiting list to get bc health insurance. Then they charged me 400. I think that if I would have had insurance they would have billed the insurance 200. I believe this is done to discourage americans from coming to Canada for their cancer treatments. I found the whole debacle kind of embarrassing, that a cancer center would be like that......in Canada.

I am doing well, I believe I have been losing weight, as the foods I can eat are so limited, and so I tend to snack less because I just end up getting pain and nausea half an hour later. (it took me a year to "get it") The rectal bleeding is always there too, but I don't worry about it anymore because I know it does not affect my blood count too much. (I guess this also took me a year to "get it")

So I am 2 years and 1.5 months post surgery, and it is looking more and more like I " beat the dragon".... I really do not think about it much, and almost never worry about it anymore.

Bye for now

Love

Janet

jankenb @ gmail.com

nursing homes

2011-03-27T19:12:00.000-07:00

Hi Everyone

I just got home from Williams Lake, my mother was admitted to a long term care facility this weekend and my sister and I went up to be there for this very difficult time. In Canada there is a shortage of long term care beds and so there is a waiting list,

so approx one year ago her name was put on a list for long term care. We thought it would be approx a 2 year wait for her to get in, and while we did not think the time was right when we applied, we felt that the time might well be right when 2 years came around.

I should also point out here that the waiting list are for the totally government sponsored beds. Someone with the funds can go into facility right away.

My father has been the primary caregiver for 4 years now, my mother had a stroke in Feb 2007, while having an angiogram. The angiogram was part of the work up for open heart surgery to replace her aortic valve. She went through 6 months of rehab and went home with a walker. We purchased a modular home that was set up for a person with handicaps, so that she could sit to work in the kitchen and we felt that she could be much more independent. In August of that year, the time came for her aortic valve surgery, and since she was getting very short of breath (due to Aortic stenosis) she decided that she still wanted to have the surgery. BUT.... a week before she was to have surgery she fell and broke her hip. She was flown to Victoria and both the hip surgery and the open heart surgery were performed within a few days of each other.

She did well after the heart surgery, but that she had had open heart surgery, she could not do the normal rehab that a hip fracture patient would undergo. (when the chest is split open with open heart surgery, the sternum takes a good 6 weeks to heal and you cannot put weight on your arms)

So she in essence ended up in wheelchair.

Last September my father admitted he was burning out from this, and we had a family meeting to find out how we could help and from this, she was started on a once a month week of respite care as well as twice weekly caregivers in the home to help with bathing. Then a few weeks her name came up, and we were in the position of either taking the bed, OR going back to the bottom of the list. (another possible 2 year wait)

So the decision was made to take the bed now.

My mother has some memory problems, but does seem to know what is going on right now and is seeming devastated and extremely sad. As one might expect, this has been an extremely difficult weekend for my family. We are all extremely sad to see her so sad.

In the two weeks or so of planning for this trip I have been trying to figure out a way to somehow make this all better. I have a certain amount of guilt for having been gone from Canada for so long, and only having seen my parents once a year or so. Now in coming back I wanted to try to make it up somehow and had hoped to be able to take her for periods of time to add to the respite and to make it easier for Dad to be able to care for her at home. BUT the bed came up before I was physically able to do any of that. So the decision now is not whether I can care for her for a week a month, but can I care for her full time?

We ARE hoping to break ground in building our home here in the next few weeks, and the plans we purchased we chose with the plan in mind that Mom would be coming for weeks at a time, so with mainfloor bedroom and wheelchair bathroom.

Ken and I spoke before I went up and have agreed that we CAN take her on full time with hiring care aids to look after her when I am working etc.

Although it is a very big step to take, I presented this plan to my family this weekend, and the consensus was to see how she does for the first few months. This will allow us time to get the house set up and ready for her. It is just breaking my heart though to know she is there and she does not want to be there, and when she asks, will I have to stay here forever?? I really do not know what to say.

I have told her about our house and that she is going to be coming for a visit and I guess we will start there.

This is clearly not something that every family has to deal with, as many people live out their lives without ever needing long term care. Several years ago my parents were visiting us in Bandon, and I took my father to the Wellness center to show him a bench I wanted him to copy for my yard. We had to go right through the Alzheimer's unit and my usual confident father was visibly terrified. He said on leaving to "shoot me if I ever get like this", implying he would never want to go into a place like this. I guess its just something most people hope to somehow bypass. I would say having worked on the other side of this issue for years that it is never easy and never straightforward.

I have to include another interesting tidbit I found out this weekend. I stayed the weekend at my parents house, I stayed in the van.

Looking for a book to read, I noticed a very plain book on the bookshelf titled “1906 fruit growers report”, which caught my interest.

Somewhere in reading about my mothers family a few years ago I read that my great grandfather, (my mothers paternal grandfather) has been commissioned by the BC government at the turn of the century to go into the Okanagan to determine the feasibility of growing fruit there.

(any Canadians reading this will know that the Okanagan has been one of the main areas that fruit has been grown in western Canada, but in more recent years, grapes.....)

I guess I was unsure of the validity of the statement until I started reading this book tonite. The book was essentially a meeting of the fruit growers of the "dominion of Canada", in Ottawa. He was a delegate from BC. There were several Canadian government officials who attended including the minister of agriculture, “the minister of Militia” and the governor general of Canada.

What is even more fascinating about this book is that a one of the primary objectives of this meeting was to address the “adulteration of foods”

There is a good deal of discussion of the impurities that were being added to the foods, such as preservatives, colour dyes and glucose. The minister of agriculture was essentially saying that we have preserved food without these substances for many years, safely why allow these substances now. (in 1906)

I have really only skimmed the book, but was extremely proud to read my great grandfathers comments. I guess I always knew that my love for gardening was so strong it MUST be genetic. I certainly will write more about it.

On my last CD the song I wrote, “with this seed” was actually about this, knowing my grandfather was a farmer, and my grandfather was a horticulturist.

Love

Janet

jankenb @ gmail.com

life carries on

2011-03-22T20:03:00.000-07:00

Hi there

We have now been in Canada for almost 2 months, and we are adjusting. Somehow it just seems as though if we could just get through the.......... then everything is going to be fine. We keep thinking that anytime now, our lives are going to settle down and the stressors are going to go away. Sometimes I wonder if I just have this unreal expectation that there is such a thing as a life without stress.

We just today received the funds from out Bandon house, it was due on March 1st, and we had made offer on land here, so a very stressful month.

So everything going through today, yesterday we found out that Ken's dad had a heart attack last weekend.....

my mother is going into nursing home on Friday. Big step in my life..... sooooo hard to deal with. I had hoped in moving to Canada to be able to be more involved in my mother's care.

So my sister and I are driving up to Williams Lake to be there when my mother goes to the facility and Ken is going in the other direction to be there with his parents. His father is almost 90 now.

We have had multiple trips to Kamloops and Kelowna trying to get our vehicles "inspected" so that they can be licensed in Canada.

I think if we were to do it over again we might have just sold our vehicles prior to the move, for all it has cost and the time involved. I think that moving to another country is not for the light hearted.... and to do it twice is NUTZ. EVERYTHING has to be changed when you change countries.....my next big step is that April 1st, I will officially have health care in Canada. There is a 3 month wait once you arrive.

All of my medical misadventures have definitely aided in our medical knowledge, in that between us we have diagnosed 4 people with radiation proctitis, patients whom had been treated unsuccessfully for what was felt to be hemorrhoids etc. So perhaps others might benefit.

The land we have ....purchased is 2 blocks from the clinic I will be working at in Scotch Creek, it is 1.67 acres and flat and perfect for gardening/farming. I have hundreds of little seedlings growing in our rental house, just vying for a bit of light. (we do have undercabinet flourescent lighting in the kitchen) So I just have to keep everything growing for another week or so until we can put the seedlings out on our new property.

We have found a house plan online that includes photographs of the house fully built.

It IS smaller than the Bandon house, but all we really need.

http://www.rosschapin.com/Plans/Cottage/Egdemoor/Edgemoor.html

We will make the downstairs bathroom wheelchair accessible so my mother can come and stay.

Lots of Love

Janet

jankenb @ gmail.com

BC cancer agency

2011-03-05T10:43:00.000-08:00

Hi Everyone

I have had my first visit with the cancer center in BC in Kelowna, yesterday.

It went very well and I even learned a few things.

The doctor I saw was a radiation oncologist and he had reviewed my records and was pretty amazed that a patient who had had radiation for gyne cancer would have the problems I am having. Through it all he concluded that I must just be one of those people who are extremely sensitive to radiation.

He had never seen someone with my kind of radiation develop proctitis, the enteritis OR the skin breakdown that I experienced at the end of radiation, the open wound that took 3 months to heal after radiation.

I quite liked him, he was pretty darn blunt.

He did have an explanation for how it was that I got these small bowel problems though.

I have explained some of this stuff a long time ago, but I am going to explain it again here with the newer information.

After a hysterectomy the pelvis is essentially empty, leaving lots of room for the small bowel to move down into the pelvis. The small bowel is more susceptible to damage from radiation, but since it moves around so much, one specific area does not get hit by the full 25 treatmentes of radiation. The Large bowel does not move around, as it is fixed to certain structures in the abdomen/pelvis, so it gets the dose the same for the 25 treatments. The large bowel is not as susceptible to the effects of radiation though. So this is why I have the proctitis, , the rectal area gets hit by each and every treatment. What I learned yesterday is that IF the small bowel is in any way "tethered" to anything in the pelvis, (such as when a person is post op and has adhesions, or scars HOLDING the bowel to perhaps a sidewall in the pelvis) then that area of small bowel will get the same dose every day for perhaps the entire 25 treatments. And being more susceptable to the effects, tends to sustain damage.

He was blunt about the follow up in describing the futility. So if the DO find a recurrence in the vagina, unlikely they could do much to treat it, because I could not be radiation any more PLUS surgery in that area would not heal.

The lesion that we removed 2 weeks ago thought it was very small, is not healing at all, it really does not do anything, so i am afraid I am back to that situation again, trying to get somethiung to heal in an area that does not heal well.

Things are going well, I am more thrilled every day to be here, we are spending more time with family all the time and it just feels right.

I starting in right away as a rabble rouser at the clinic.

There is this one policy they have that has the doctor who is on call for the ER going back and forth all day between the office and the ER. I laid out a plan and made a proposal to change all that and lo and behold, I DID get it changed and afterwards, everyone is saying "now why DID we do it that way" NO ONE liked it the old way, not the nurses, not the doctors and of course not the patients....and no one knew why we were doing it that way.

So all my years of training as a rabble rouser in the US, will definitely not go to waste.

We really like the other doctor we are working with, he is from Sri Lanka. He is extremely easy going and VERY easy to work with.

We also have a nurse practitioner whoe we work with and she is great too. The nurses in the ER are great too, in fact one of them was in the class behind me in nursing school back in 1977.

I really am starting to come to terms with my radiation stuff. I guess its like Kubler Ross's stages of grief and greiving. (She wrote all those years ago on death and dying, describing several steps a person goes through with any sort of loss) I am sure I have talked about this before, but mention it now, just in that I really can see that I have been through several steps of acceptance.

Kubler Ross's steps are : and note that this is actually on death and dying, but it has been found that people go through similar steps with any sort of loss

"The progression of states is:^[2]

Denial—"I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind after death.
Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..."
Depression—"I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with his mortality or that of his loved one.

Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies anddisasters."

Looking back I have really struggled with this "condition" working so hard to just make it go away. I realize now that it is not going to go away and I guess really what I wanted from the doctor is just someone who can recognize that it is a difficult problem, who is willing to help me when I need it. This doctor I saw yesterday, once I explained to him that I HAVE accepted that this will likely be a chronic illness, and my biggest fear/concern at this point is not having a doctor to help me with the symptoms.

There are times when I need pain meds, and antinausea and there may come a time that I need to have a procedure for the bleeding. I guess I just feel so much better knowing that I have a doctor for now who knows that this is a painful disease and is willing to help out where he can.

I have just had the most terrible night, had pizza for dinner last night, and bought come dark chocolate to have with dinner and was sick all night. So not sure if it was the cheese on the pizza, the chocolate, or if it was some of the veggies on the pizza, and we went over to Kelowna and I did not bring any of my nausea meds with me.

So lesson from that, I likely CANNOT eat chocolate at all, I need to take my meds wherever I go! AND it just seems to work better just to eat at home where I can cook all my own meals. Once I have my garden up and running that should not be a concern.

All my bedding plants that are all over my kitchen are about 2 inches high now, and I am really looking forward to having our acreage so I can plant them

I may need to get rid of the snow, to find a place to plant them, but doggonit, I may just do that.

OH and I just cannot say how much I love that I have been given another chance to be a doctor, I am just loving being a doctor, there was a time back at Eugene that I thought given the situation there that I might never get to practice medicine again, so I have been given another chance on SO MANY levels.

Life is great.

Lots of love to all.

Janet

jankenb @ gmail.com

My second anniversary

2011-02-26T07:32:00.000-08:00

I have to say that it has been years since I really looked forward to christmas, or my birthday etc etc. However I really do could the days to my anniversaries from my surgery. So I am now 2 years cancer free. It was quite timely how the results of my biopsy came back yesterday, just in time to add to the celebrations. My biopsy was benign!

So on wards.

Celebrated by getting a crown done on one of my molars which in itself was pretty exciting, since this was the first dental work I have had done in the past 14 years (and I have had lots root canals etc) that I was actually numb. So seem to have found myself a very good dentist.

May have created my own monster, in that the area that we biopsied is showing no signs of healing at all, however we will take out stitches today since stitches themselves left in can be a source of infection. But that is nothing I haven't already dealt with so no biggie there.

Bye for now, looking towards a hopefully warmer March.

Love

Janet

jankenb @ gmail.com

first day in ER

2011-02-24T07:32:00.000-08:00

Hi Everyone.

Almost 2 weeks down at new job and things are setting down.

I had my first day in the ER yesterday in about 12 years. It went well. I have to admit I have been somewhat indoctrinated into the american way of looking at the Canadian health care system (only very slightly, and even what I had preconceived is wrong)

I had a patient with what appeared to be a strain, I took an xray and it was non conclusive and speaking immediately with the radiologist, he suggested a CT scan (with my preconception of the Canadian system, I said "how long is THAT going to take?), and he said, just fax over a req, and send her over (over to Kamloops). SHe was back to Chase in 2 hours of so.

With one payer, everyone is working on the same page, and for a common goal, and that is the patient care. So it seems to save a lot of money just having everyone working for the same payer, so it cuts out a set of management in every dept.

Also this little "hospital" well its not really a hospital, it has an ER, lab, home care, xray, diabetes teaching, etc etc. No actual beds to spend the night.

The xray and lab are similar to bandon, except they only have techs and no managers, instead there is a manager for the whole building instead of a manager for each dept. (since it is small).

The charting is less onerous since we are only charting for record keeping for the patient, as opposed to the US where your charting is doing to defend your billing to medicare, (or other insurance companies)

What can I say, I just love it.

We DID purchase the acreage we were looking at, and the whole deal is more or less depending on us getting the money from the house in Bandon. SO I have started about 10 large flats with seeds all around the kitchen and bathroom to get all my seeds going, as when the snow is gone, I will have somewhere to put them in the ground.

Everything is going very well, except one ....little thing..

I had Ken remove a lesion that had formed on my vulva over the past few weeks, it is about 3 -4 mm, and very hard and seemed to have been altering the anatomy there.

We have sent it for pathology and are anxiously awaiting the results.

OF COURSE I spent a whole day reading about vulvar cancer and the good thing is that they did not mention any that were from recurring endometrial cancer. So if anything this would be a totally new cancer...which is better than a recurring one.

BUT I will try NOT to get too far ahead of myself and try to be patient waiting for the results.

But I did want to mention for anyone to report any changes spots etc on their vulva (the flappy lips on the outside of the vagina), it is not a really common cancer, but it is not unheard of either.. YOu can get malignant melanonas there as well as basal cell carcinomas, but most are more specific to the vulva.

They often present with itching, or irritation to the area. They can get mistaken for yeast infections. So anyone with chronic problems down there, need to get looked at with regards to the possibility of something else going on. There are many skin conditions that occur in the area including psoriasis.

Not sure if 2 days is too early to be looking for results, but I will head down and search out my results.

It certainly would not be the first time I panicked over nothing, and likely not the last

Love

Janet

jankenb @ gmail.com

happy valentine's day

2011-02-15T09:33:00.000-08:00

Hi Everyone

Well yesterday was our first day of work. I just loved it, it was such a joy to be practicing medicine again. Ken, not so much. Ken was, if you can believe it..... grouchy....no say it isn't so.....

The big thing is that they have computerized charts here. Ken has worked with them at the job at the university and at the urgent care clinic. I have NOT worked with them.

I guess the program at the urgent care clinic is a much better program, and for me, I am easy to please because I have never worked with computer programs.

Ken is not grouchy today though, so all is well.

Met many wonderful patients who were all so appreciative that we are in Chase, and right off the bat sending women off for endometrial biopsies. NOT going to let one endometrial cancer get past me..... not on my watch....

The wonderful trumpeter swans posed for me just out our front window, they are amazing creatures. With several of them out there they basically sound like the horn section of an orchestra "warming up".

Not all is perfect though, and I am having more and more pain, which really has me worried. I have pain after I eat almost anything now. I often have nausea. SO OF COURSE I am worried about recurrences, like a broken record, it just comes around every 3-4 months.

Just when all of the stressors of the past several years have disappeared it just seems as though SOMETHING is bound to go wrong now. I guess that is where my twisted mind goes.

I do not think I am alone, I am sure that all cancer patients go through phases like this.

I did just get a call from the cancer agency, saying, not sure if you have been told about your appointment.....

YEA.... NO NOONE told me about an appointment.

So I am seeing the radiation oncologist on March the 4th in Kelowna and I am thrilled. It is a bit scary not having a doctor yet. So I have an "in".

Rex is all better, but Chewy DID figure out a way to get the rice and chicken, he too started with the diarrhea.

We did find out what caused it. Rex's stool cultures came back as "Clostridium Difficile",

better known as "c diff"

This is the bug that shuts down nursing homes etc......

It is an opportunistic bug which means that it is very common, but only infects when given an advantage. We see it most often in patients in the hospital who have been treated with antibiotics. The antibiotics kill off the good bacteria in the bowel, allowing C difficile to take over.

It is also seen in the elderly with decreased immunity.

Presents with diarrhea often bloody.

So today I am off and Ken is working ( I have half time position)

much love

janet

jankenb @ gmail.com

Wasn't it a party?

2011-02-10T07:17:00.000-08:00

Well Rex is better.

We are finding that the two hardest things to get sorted our have been getting the mini cooper into the country and me getting into the cancer agency.

If we were to put together all the time Ken has spent on the phone trying to get the mini cooper into the country, I would said it would likely add up to about at least 8 hours.

For some reason BMW, the makers of the mini) have created this incredible complicated system such that we will have to pay 2000 dollars to change over our car to Canadian standards. The running lights (in Canada it is law that all vehicles after a certain date must have headlights that are on all the time for safety) We actually had the car set up this way after we bought it 9 years ago. Somehow to make it officially changed over alters all of the electronics and warning lights,so the whole cluster has to be replaced. Then we need proof from the company that there are no recalls on the car. The Mini company has told us that there are no recalls, however they will not put it in writing, and in order to get a “no recalls” letter will cost us 500 dollars. So we have been going around and around with this.

The other thing is getting me into the BC cancer agency for my followups. They have all of my records showing my cancer, pathology, and all the treatments, and I have copies of all the films. They said that they needed a letter of consult from my Eugene doctor. She sent a letter that only said that I have all my records. I am not sure what her issue is and why she would not send a consult letter.

So I called the cancer agency back and asked exactly what they wanted in the letter and they said the letter has to say what she wants them to do, but I said is this not standard...?

THen I asked, perhaps I have something confused here, “do you DO followup here” they assured me that yes they DO followup of cancers.....

So I asked if I could get a letter from my primary care doctor and they said yes and she faxed letter and they said that they did not get it. So then I asked if my husband could write a letter and they said yes....

SO I figure WHAT GIVES?? If my husband can write the letter, this is obviously a formality, and apparently has nothing to do with insurance.

I guess I HAD my hopes up that things would be diferent up here, but.....

I have explained that I DO have insurance....

I guess it has always seemed that a clinic that cares for cancer patients should be compassionate to the difficulties that cancer patients go through and I really would feel SOO much better right now to at least know I have somewhere to go if I have a problem. Since I still have a lot of bleeding and pain, I just would feel better to know I have a doctor here.

So me and the mini seem to be out in the cold for now...

I have been to the dentist though...

Rex, we thought perhaps was not going to make it, with his age, and the amount of diarhea and blood that he passed it just seemed he is so frail anyways.

But we took him to vet and in the vets office he had another bloody diarhea all over the office, seemed like it was just exploding.

She was certainly impressed.

She was great, and did a full exam, we did samples of the stool and she gave us syringes and needles (we still had bags of IV fluids from when I was on Chemo) So we drew up 60 cc of fluid and injected it into the subcutaneous tissued in the neck. We actually only did this twice because he seemed to be be starting to get his appetite back by this time and gradually he has been eating and drinking.

So he seems to be fine now.

I guess it was food poisoning.

Likely all those dead fish on the beach, not sure if I mentioned that this lake is connected to the adams river which is the site of the largest salmon run in north american. They all go there to spawn in October and this past year was the largest salmon run in 100 years. and ......... they all ....died and floated down the river and the Shuswap and Little Shuswap are completely lined with dead salmon.

Since it is cold, they are frozen but the vet said that though “salmon poisoning” is not common in this area, they may carry many other infections.

So Rex is eating rice and chicken and Chewy is very jealous, and trying to figure out how HE TOO can poop out bloody diarhea so he can get some rice and chicken too.

We are expecting to get the funds from our house at the end of the month, and have been looking for an acreage out at Scotch Creek which is a small town on the Shuswap.

(Chase is on a smaller lake called the “little Shuswap”)

It is 1.6 acres on a very flat area, and backs onto a wilderness area. Would be great for gardening. It is hard to envision land, when it is covered with snow.

Anyways I will get this blog posted as I have included many of the photos from our last party. ...... of many of the wonderful people who have touched our lives in the past several years.

Just going through the pictures, they "cross section" many aspects of our lives in Bandon...... great party.

Also one shot of the "high tunnel" to show how productive it was despite freezing temperatures, the spinach and mustard greens were growing like crazy.

Today Ken and I are going into the clinic to learn the computer system and on monday we begin work....YEA>>>>

Love Janet

jankenb @ gmail.com

we have arrived!

2011-02-03T06:24:00.000-08:00

Well we have made it to Chase, and life is good.

We have a rented furnished house to live in until July 1st. It overlooks the "Little Shuswap" lake and we watched the trumpeter swans out our front window on the lake http://en.wikipedia.org/wiki/Trumpeter_Swan

Just as an aside, about the swans, they were hunted to near extinction at the beginning of the 20th century. Out in the Chilcotin (an area west of where I grew up in BC), a man named Ralph Edwards is credited for saving the Trumpeter Swans by hauling grain up to Lonesome Lake in the 1920s and 30s. A book was written about him by Leland Stowe, called "the Crusoe of Lonesome Lake".

They only come in the winter.

Well it is now the 4th and every day is getting better and just now realizing what a very difficult time the past while has been. I said to Ken I just could not believe how much better I felt yesterday than the day before, and today I just cannot believe how much better I feel.

Our malpractice and privileges have pretty much gone through, and so essentially all the things that were issues in our working in Eugene, have been solved here. We have left two beautiful homes behind, and it is always hard, HOWEVER... the house we are renting is so incredibly bright it seems to make up for some of the shortcomings. I guess all the snow helps the brightness, I had forgotten how much light the snow brings into the house.

I am so happy to be back in the same country as my children, and how badly I feel for having been gone for so long from my parents. Looking back I am trying to remember why we went to the US.

We went because we wanted to be by the ocean. Having a bit of a wild older son, the very best days our family had together were days on the beach. So we wanted to be by a beach. Most people are unaware of this but there is very little ocean front that is habitable on the west coast of Canada, and what is available is some of the most expensive property in Canada, Vancouver, and Victoria.

At the time we left, the BC government was limiting "billing numbers", the one thing you need to posses as a physician in order to be paid. The govt at the time thought that there were too many doctors in the province and that that was why health care costs were so high.

We wanted to move to a place called Sechelt, and it would have cost us 600 thousand for a half time practice (so a quarter time each), since the way the system worked. Rather than end up in debt just for the right to practice we looked south.

A flyer was frequently delivered to a friend from the OHSU, the med school in Oregon advertising positions for doctors in rural areas, and we saw jobs on the Oregon coast, and eventually took one. It took over a year to get our green cards.

Recently preparing for this move, I went back over our annual taxes for the past 17 years or so as I was curious if we really DID make more money in the US and many had accused us as moving there for that reason. I found that of the 14 years we have been in the US, only one year did we make more than we had in Canada, and many of the years we made less than a half than we had made in Canada.

Anyways, I digress again. It is now Monday and we are on our way to Kamloops with a very sick dog, poor Rex has had diarrhea for the past 2 days, and was basically up all night, and most recently has been passing just blood.

We are not sure if this is perhaps his end, but it may just be an infection.

We will see.

We are otherwise doing very well up here and I will post this now, with the hopes to have some time in the next few days to post a few pictures. We have very minimal internet where we are.

Love

Janet

jankenb @ gmail.com

moving day

2011-01-30T19:37:00.000-08:00

Well I am leaving in the morning.

I feel that I have been moving for months now, even years. We are not sure we ever really moved into the Bandon house. We built it, lived in an RV while it was being built, our 2 sons lived in smaller RVs next to ours, and we had a year of living in our own private RV park.

We moved in when it was finished, but somehow we never really moved in. Your whole perspective changes after living in an RV for a year.

You no longer have an affinity for souvenirs and trinkets, they are the first things to go when you are downsizing.

The really depressing part is that I really thought we had downsized a lot as we have gotten rid of a lot of stuff, and children (so to speak).

When you move to another country, you have to itemize everything you own, so you can provide a list to the customs person when you move. The way we have done this (now we are about to do IT for a second time) is that we have a book that we list everything that is in the boxes. Each cardboard box is assigned a number and the number goes in the book and the book lists what is in the box. Heaven help us should we lose the book. We are now making copies of the book so the moving company has a copy.

The last time we spent weeks packing and making note of everything and when we got to the border, the moving van had already crossed with out stuff and they seemed TOTALLY uninterested in our book.

(hard to pump yourself up once again to "itemize" everything you own)

However we have done that, and looking back, when we were at box 50, Ken was smug, saying that we have had over 200 boxes when we moved to the US ( as it we have so much less now)

Now we are well over 200 b0xes.

In 2003, we planned on moving back to Canada. We had taken a strong public stance against the war and had been "publicly" reminded we were Canadians and to mind our own affairs..

so to speak.

There were letters to the editor about us, we received what I would consider hate mail, and one day I felt extremely alone, I wrote a song called "Time to go". The

I feel it whenever the wind blows

I feel it deep in my soul

I feel it when the night is upon me

it's time for me to go

CHORUS

I Feel so far from home

I feel I don't belong

I feel like a stranger here

it's time for me to go

the tide will only get higher

the waves will start crashing in

my life will only get harder to bear

it's time for me to go

voices constantly calling

they question why I am here

they say whenever the wind blows

they say it's time to go

I yearn to be where the sun shines

my heart longs to be free

my heart will go where the wind goes

and I will go away

The song has always been one of my most popular songs and has been on two of my CDs. It has always been my families favourite song as well. For some odd reason there were several people who considered it an assisted suicide song, being written in Oregon, me being a doctor...

However it was an interesting journey into the realm of music, and all that goes on there.

It did feel odd playing the song after my diagnosis with the cancer though.

Today we did a video in our back yard, and if it is not at the end of this blog, it will be on one soon.

My health is... stable. My "twin" has just been diagnosed with possible recurrence of her cancer in the lymph nodes around the heart and lungs. When I say twin, .. she is someone who had exactly the same grade and stage or cancer and she received exactly the same treatments as me. Only thing is that she was 6 months ahead of me. I guess we were both thinking that we were out of the woods.

I am looking forward to "establishing" with the BC cancer agency for my follow up. I have more pain with time, and though it has been established that the pain is related to the radiation damage, it is hard some times, not to worry about the cancer..... but I don't... too often.

Well NOW it is moving day, I had a very rough night with nausea and pain, so I have opted to wait for Ken and drive up with him after the moving van leaves. We have to be at border before 3:30 to get the cars "imported".

The van is here...sooo

gotta go

love Janet

janken b @ gmail.com

where we are going

2011-01-23T07:20:00.000-08:00

I have sat down to write now several times, but something seems to keep getting in the way.

So I will start all over.

The moving van is coming a week tomorrow to load our things and I will likely leave that day for Canada. Ken likely the day after.

I cancelled my health insurance for the end of January (what was I thinking)(it WAS a big deal though). I do have interim private health insurance in Canada, until the regular government insurance kicks in.(there is a 3 month waiting period)

Interesting though that the private insurance there costs less than a quarter of the monthly premiums we are paying here.

It was hard saying goodbye to everyone last weekend, such wonderful friends. The term "end of an era" was brought up about our leaving and I echoed the term in my comments of leaving. The wonderful people of the peace movement there really kept us there ......... perhaps longer than we should have stayed. We feel that all the conflict at the hospital really did me in.

However it was a time that I will always hold as a very special part of my life. To put it into a sentence.... It was the time I realized that even when all those around you disagree with you, you are not necessarily wrong.

I did truly love the hospital work as well, funny how a few bad apples can ruin the whole box.

Ken and I have decided that we are leaving SO MUCH behind, that at this point it is best we just look forward, lest we go crazy.

We ...kind of, sort of like, maybe have an offer on our house.. well you know how it goes.

AND we have had lots of interest in our Eugene house. It is all very painful, especially seeing the Bandon house go for what it is going for. Its like we spent 3 full years paying for the half of the house that someone is getting for free. Just isn't fair.

Looking forward. We have a furnished house to rent the first of February, in Chase. I am hoping to start work the first week of February. Joshes car is still registered, and insured in the US because he is a student and in looking into it, we cannot take it officially into Canada, so will have to drive it back into Washington and just sell it to a car dealer in Bellingham. (surely we are not going to come out on top of that deal) His car is a Kia and the year it was made 2006, it did not meet the standards required to be licensed in Canada.

Our Van will cost us a lot to take over as well.

Since we have lived in the US all these years we can bring our vehicles over "duty free", up to 10,000 and the rest we have to pay duty and tax on.

The Mini cooper will be fine, and it has winter tires on it, how cool is that?

We will be working at a clinic in Chase which has
View Larger Map

a satellite clinic over in scotch creek which you can see on this map where the two are, just zoom out and you will see Scotch creek on the north side of the bigger lake

We are looking at an older house on 3 acres half way between the two. I wish I was better with google earth and I would show you in more detail where we were going to be.

Well back to packing, will keep you updated. Love Janet

move date january 31

2011-01-07T15:18:00.000-08:00

Hi there

Well Ken and I are definitely on the move. We have a moving date of January 31st and theoretically starting work in Chase BC on Feb 14th.

I might possibly begin before that date.

The Chase clinic is in a small town 2500 people on the little Shuswap Lake, which is right next to the Shuswap lake, which is huge. A real summer destination spot.

Chase itself is not so much of a destination as the points beyond Chase. We are looking at working in Chase and possibly eventually living at a place called Scotch Creek, which is a very small spot along the north Shuswap lake, as there are many small acreages up above the lake.

Moving and starting up this month will prevent us from sinking too much further into debt (whilst waiting for house to sell)

Ken has this (clever) ad running in the Bandon paper this week, advertising a half price sale on our house, with the price being about half of what it cost us to build.

We are trying to focus on being very unemotional about it all, after all its just money and we have our health.

Giving up the Eugene house is also very hard for us after all of our dreams of this little hobby farm. ( we have planted SO many fruit trees in the past and just left them). I worked SO hard last summer on this garden. However I am very thankful that I had such a great gardening summer and hope that soon we can have another garden.

So we try to keep looking forward instead of back and being up in Canada makes that easier. I just got back from yet another trip up to Canada yesterday. I went up to look for a house for us to rent to begin with.

Snowed the whole time I was there it seems. The mayor of Chase found us a house to rent that is fully furnished (the owners come just for the summers so we will have to be out by end of June) We figure we will have a better idea of where we want to live by then, and hopefully our properties down here will have sold by then and we can afford to buy up there.

Ken and I will work in a clinic that is next to a medical center. The medical center has lab, xray, and an emergency dept. The emergency dept is only open from 9 am until 3 pm each day.

There is a clinic in Scotch Creek that is sort of a satelite of the chase clinic.

Currently no doctors are going out to Scotch Creek clinic, there is a nurse practitioner that goes every 2 weeks. I am hoping to start going weekly to get that clinic going again. (there are 5000 full time residents on the north side of the lake and this would be their nearest medical clinic)

Ken and I have both signed a contract with Ken working full time and me working .5 time (half time)

Our two sons live in Kamloops (40 mins away)(as well as my sister)

My parents live about 3.5 hours away and Kens are about the same in the other direction.

We are having a big "leaving" party at our Bandon house on January 15th for anyone who wants to come, it may well be the last time we are in Bandon for a long while.

It will be a potluck dinner and I am encouraging people to bring lawn chairs (our couch and kitchen chairs are still there, so there is some seating.

So thats what we are up to, though leaving is very hard, we are trying to only look ahead.

Love Janet

jankenb @ gmail.com

Oh what a pain

2010-12-15T07:26:00.000-08:00

Hi Everyone

We are up in Canada now, going to Williams Lake to spend a few days with my parents.

We are then going to look at a few communities that need doctors. Chase and Clearwater.

It is great to have a lot to chose from, since there are so many variables that enter into the decision of which job and which town do we want to go to. In British Columbia they have made an effort to define the level of isolation and from that they have determined income levels as well as benefits etc.

The distance from which the nearest specialist, how far north, population of town, number of doctors in each town, are all factors that play into the division. It seems as though we totally have our choice of living anywhere in the province we want, as there are jobs for doctors everywhere. It is so much the opposite from the situation in Oregon, where it seems that Bandon was the only place we could work. Ken is doing urgent care clinics now, but does not see that as a long term career, as the shifts are very long and he has to see a lot of patients in that time, never really getting to know anyone. Most of these jobs in BC would involve hospital privilages, something else that we can not get in Oregon. The physicians who practice in more isolated communities are compensated with special stipends and those who move there have their moving expenses covered.

In deciding where to go we have made a list of criteria. We do not want to be more than a couple of hours from a major medical center, which in BC are Kelowna, Kamloops and Vancouver. My reason for this is that should the bleeding ever become a major problem, OR if I ever have a bowel obstruction, which they told me I have a 35% chance of, I want to be in a larger hospital. Any kind of abdominal surgery on someone who has had radiation to the abdomen would be high risk surgery.

We want to be in a gardening zone 5 or higher, since this is the zone that Eliot Coleman grows throughout the winter in in Maine.

We want to be somewhere we can eventually be able to afford a small acreage, which rules out any urban areas.

We do not want to be on too much ER call, which rules out very small towns.

So you can see we are sort of going around in circles.

Some of our wish list things are mutually exclusive. So you see what happens when you have too much choice. We ARE doing our interviews on Wednesday and Thursday of this week. Obviously compromizes are going to be required.

I really feel that I am starting to get a handle on my radiation injury issues.

The sucralfate seems to keep the bleeding to a minimum most days. Some days I bleed a lot, but then I have to remind myself that there has been no bleeding for several days.

I saw a new primary care doctor a few weeks ago. The gastroenterologist suggested her...... I think he was tired of me trying to find a solution for a problem he had none for. The sucralfate enemas were my idea. Anyways, it was really an incredible visit. First of all, she had experience with radiation bowel issues.

I explained to her that I am starting to find ways to deal with my problems and explained as I have here about the low dose percoset. To my surprize she said that that is exactley what she would do if in my situation. Rather than limit oneself to an extremely unhealthy diet to control the pain........

She said that she had other women who, like me, had had gynecological cancers and subsequently developed radiation enteritis. She said that what I needed to accept was that there were no “cures” and that to a certain extent, I would just find ways to “control” the problem. She said there would be times when it is bad and times when it is better. She said that there are a number of things to try, in an attempt to control it..

First off she asked if I had tried a lactose free diet, I said that I had not, but had contemplated it. There really IS something about something being suggested by a doctor. :)

Radiation, as it causes injury to the bowels, can also damage the cells that secrete lactase, the enzyme that breaks down lactose. If the lactase is not secreted, then when you drink milk or eat milk products, the protein lastose (from milk) does not get broken down, and in essence it just rots in the gut, causing gas, diarhea and abdominal bloating. Her suggestion was to try for a week to go with no milk products and then to gradually reintroduce them to determine my tolerance level.

Although this did not help my pain, it did seem to help the continuous gas, and I do feel better without the milk. I went back to my Barbara Kingsolver book (animal vegetable miracle) and she explains (as a lactose intoleree herself) that while milk icecream and yoghurt are the worst, as you get into the cheeses you will find less and less lactose as the cheeses get older or harder.

Apparently all asians are lactose intolerant as well as 50% of african americans, and also people in general become more intolerant with age.

Most people are “relative” lactose intolerant in that they can tolerate small amounts. I gather than that is likely me in that the entire part of the bowel that secretes lactase is not likely affected, more likely a portion of it. She also explains that the softer cheeses are also the hardest ones to tolerate. Apparently the fermentation process is what breaks down a lot of the lactose during the process of cheese making. However in the manufactoring of the soft cheeses, to speed up the process, they actually illiminate the fermentation process and just add the acid(the other part of the process).

So soft cheeses purchased from the large manufacturors are often not tolerated HOWEVER, I have just bought all the stuff required to make my own mozzerella cheese and plan to attempt to make my own, and use the fermentation process.

To go with my morning latte I have been experimenting with all of the alternatives to milk, soy, rice milk, and more recently HEMP MILK.... it was terrible.

Well this brings me to Wednesday morning and we are heading off from Williams Lake to Clearwater this morning.

I will keep you posted.

much love

Janet Bates

jankenb @ gmail.com

radio show tonite

2010-11-30T14:11:00.000-08:00

Hi everyone

Ken and Mark and I are playing live on a radio show tonite at 8 pm

Here is the link, the show is streaming.

http://www.krvm.org/listen/listen.html

Love

Janet

and them bones...

2010-11-25T07:00:00.001-08:00

Well while I am at it, I might as well explain the rest.

A week ago I was up at OHSU at the osteoporosis clinic. A year ago it was suggested that I go on treatment for osteoporosis because my left hip was osteoporotic (or .1 points away from it).

I did not go on treatments because that was around the same time that all of my gastrointestinal problems began. I have taken calcium and Vit d though.

My other hip and the other bones tested were fine. I truly feel that this was a result of radiation, because I have been a long distance runner for years, I have done all the right things...... well that does not always work. Irregardless, I do not wish to have a broken hip before I turn 60, so will do the treatment.

At the clinic he said I had a 5 percent risk of a pathologic fracture in the next 10 years. He also suggested that he would not suggest I receive the oral form of treatment with all the problems I have had. There is a new treatment that is given once a year intravenously, and that is likely what I will do. The really important thing with this treatment is to have your Vitamin d blood levels normal. I had a test of my vit d levels and it was low. Hard to believe since I have been taking supplements for a year. He said it was extremely common in Oregon, I guess because of the lack of sunshine. I do feel I "partook" in as much sunshine as I could last summer.

The other thing I learned from him, is that since I am on a medication that changes the PH of the stomach (ie makes it less acidic) regular calcium (calcium carbonate)

was not well absorbed.

He said though that for people who are on any meds that change the ph of the stomach, that they should be on calcium "citrate". It is much better absorbed in any ph. It can be found at any pharmacy.

So I am not on Vit D 2000 units to raise my levels prior to the infusion. Many people are fearful of the osteonecrosis of the jaw, which has occurred on these meds.

I have recently been listening to medical lectures on CDs and it was explained that this only occurred in people who had had a dental extraction.

So it is likely a good idea to have your teeth checked prior to starting treatment to make sure you are not going to need a tooth extracted.

We have sub freezing weather now here in Eugene and my "hoop house" or "high tunnel" is keep cozy and warm..... well 34 degrees or higher, with no other form of heat.

The day before the big freeze I went out and cut off all my pepper plants at the base of the stem, cut off all the leaves and I have all the peppers in vases, ripening on the plants.

Apparently they will ripen faster if they are kept above 60 degrees, and slower at 50-60.

Below that nothing will happen and above 60-70 they will dry out.

So I have one vase in the garage, one in the back bedroom and one in the greenhouse, all different temperatures, so that they will ripen at different times. Apparently it works best if they are still on the plant. I had no idea how many peppers I had, until I "harvested" them.

One thing I have learned this year about tomatoes and peppers. In the spring, planting the seedlings I had grown in the greenhouse, the tomatoes were much more hardy.

The weather really had to be warm before the pepper seedlings would survive. However it seems as though the fall is the entire opposite. The tomato plants really started to suffer a month ago, whereas the pepper plants almost seemed to get stronger with the cooler weather.

We are still eating out of the garden, I harvested all of my carrots a few days ago and we had carrot soup, there was a very small crop of carrots.

Today we are having pumpkin cake for dessert, I had taken all our pumpkins and roasted them and pureed the pulp and froze it, and make a cake with it yesterday. The last of our potatoes we will also have today, did not get lot of potatoes this year either.

We still have tons of tomatoes ripening in boxes etc, but not sure how long that is going to last, I will have to go back on this blog to see when we started eating tomatoes, but it would be nice to be able to say we ate fresh tomatoes from our garden for 6 months.

Happy Thanksgiving to all, despite all my grumbling, we do have much to be thankful for, and we will remember that today

love

Janet

jankenb @ gmail.com

home is where the garden is

2010-11-24T15:33:00.000-08:00

Hi Everyone

I have not posted for awhile, hard to summarize all that is going on. We have this little poster in our bathroom that lists lifes little instructions, and one of them is "don't expect life to be fair".

Some days we just feel that everything is just going against us.

Owning 2 homes is an extremely expensive endeavor and clearly a mistake we made while I was on radiation. With me unable to work, and Ken options limited right now as well, we are heading further and further in debt. We have had a little more interest in our Bandon house, but clearly no offers. In fact building that house was clearly a mistake given the market. It will never sell for even a fraction of what it cost us. AND then we bought a house in Eugene.

I am sure that there are many people in much worse situations, but this is not at all how we had planned it.

On top of it all, I have just found out that I cannot get malpractice because I did not take out tail insurance when I gave up my insurance in feb 2009. I had not seen a patient out side the hospital in about a year, and the hospital insurance covered me there, and neither Ken nor I had any idea what tail insurance was.

In Canada malpractice insurance covers you for the period you pay for it, so if you are covered on june 1999 and in 2005 you get a lawsuit against you, you are covered because you had insurance then.

In the US, turns out that you are only covered as long as you continue to pay for insurance. Feb 2009 I was diagnosed with cancer and did not understand any of this, so cancelled my insurance for outside the hospital. Ken had done the same when he started at hospital

Well it turns out that insurance companies will not cover you if you have had a break in your insurance.

The work we have been doing has been covered under other people, ie Ken is covered at the university and is considered a locum at the urgent care clinic, but this is quite limited (he is only allowed to work 30 shifts a year)

Ken would likely be insurable because for him it has been over 5 years since he worked private practice.

Anyways, we are in this dreadful financial situation that really requires us both to work, and so we are looking elsewhere for work, and in fact looking north. (our medical insurance for the two of us is 1250 a month)

We also both have aging parents whom we want to spend more time with, as well as children whom we (for some ODD reason) find we really miss and wish to be closer to.

That all combined with the thoughts that we just could not stomach another election with Sarah Palin...... as well as many other reasons...

We are looking for work in Canada. British Columbia to be exact.

They are very short of doctors, and it seems like that is pretty much everywhere.

They are very short of primary care doctors in the US as well....

SO of course when you soul search and make a decision like this OF COURSE SOMETHING happens. After a day talking to recruiters last week, Ken came home and said that at the urgent care clinic he works at, they thought that they would look at hiring me to work there as well.

THAT FIGURES. So I met with them yesterday.. we will see.

Medically, a lot has happened. The hyperbarics only really worked for awhile and within a week I was bleeding as much as before, so of course I went back to the books.

The truth of the matter is that there is no one treatment for radiation proctitis that has been studied enough to recommend clearly.

So all these other treatments, hyperbarics, argon plasma treatments, etc are all treatments that have shown promise, but they need a really big study to be able to say that they work!

One fairly inexpensive treatment, with no side effects if the use of sucralfate enemas. I got the gastroenterologist to order them, he made sure to tell me he had never done it.

The enemas have to be prepared at a compounding pharmacy, because sucralfate exists as an oral formulation in the US, but not in an enema form.

Sucralfate is currently used when a person has a bleeding ulcer, they take it orally. It is felt to provide protection to open wounds, in fact it is being used also to treat chronic skin wounds.

So it makes sense for my kind of wounds, only mine are on the inside, hence the enemas.

It is 20ccs given twice a day, and I actually purchased the studies( which were all done in other countries) to get the details of how to do this. They suggest to lie on the left side for up to 30 minutes following each treatment.

The really great thing is that after only 2-3 days on treatments the bleeding was appreciably better, and after a week, it is still improving. I will continue for a month and then reassess the situation.

I am very hopeful about this new treatment, and feel that it is largely ignored in the US. I have read everything about it at pubmed which is where published articles are kept, and can find no downside, and only upsides. I just do not understand why it has not be adopted in the US. I do feel it is just wrong to ignore this problem, from everything I have read it only gets worse.

In case anyone is interested, I use 20 mls of a 10 % solution twice daily for a month. After a month if there is still bleeding it is suggested to do it for another month. Some people take up to 3 months, but the studies showed that up to 3 years later there was no signs of the bleeding returning.

I have just had a ct scan of chest abdomen and pelvis and it was essentially normal, the mass is still there in the pelvis, but it has not changed at all. A recent CA 125 was 8, which is great.

The other really great thing is that I have been doing really well with running. I have been running every second day for about 2.5 miles, for the past 8 days. So I have a great start on returning to that.

Well for the first time in 13 years, we are looking forward to celebrating thanksgiving. If nothing else we feel that we have options, and many people do not.

One of the girls on the hystersister cancer forum died yesterday (I have followed this forum for the past year and a half). Truly is sad what this cancer does to the lives of so many people.

Bye for now

Love

Janet

jankenb @ gmail.com

halloween

2010-11-05T08:14:00.000-07:00

Hi Everyone

On our way to Bandon for the hair appointment I made 6 months ago, really my first hair cut in almost 2 years. I have cut my bangs a few times.

Not to brag or anything, but it is extremely thick, so thick it is really hard to do anything with, so am looking forward to some thinning. A life of wishing I had curly hair has left me somewhat dissappointed now that I have it.

Who would have known that the curls would not go the way you want them to go???

I guess it is one of those grass is always greener things.

Halloween came and went and for the first time in 25 years, I gave out candy.

For the previous 24 we have lived in places too remote for children to wander down our driveways.

I have to say I felt badly stuffing such junk in those tiny buckets. My only defence would be that they have years to get their cholesteral and weight issues sorted out. (unlike me)

A friend was horrified when I announced that I did not believe in Halloween. Blasphemous !!!!

My arguments are that first of all, like every other holiday people go out and buy a bunch of costumes made of non biodegradable fabrics, use once, then throw away.

The amount of plastics that go into all the yard decorations is appalling. The exposing small children to high doses of high fructose corn syrup is shameful as well. BUT the biggest think is the waste of all them pumpkins. Chopped up and left to rot. ..... and what about the children in biafra (to use one of my mothers comments when I did not eat my veggies)

Pumpkins are supposed to be one of those great for you foods, with supposed anti cancer properties.

I had lunch yesterday with a few people who are interested in my becoming a medical director for possibly a couple of nursing homes, so am hopeful that I might just have a job.

Today went to see Gastroenterologist basically in follow up of the gastroscopy I had in September. I was happy to report that changing the meds to Protonix totally cleared up my reflux symptoms ( I had been on omeprazole and ranitidine) I guess I really did not think that the meds were that different.

I also had to report that the bleeding is back as heavy as it was before, and that I was interested in perhaps having the argon laser treatments. He was much more cautious this time than previously. He said that unless I was having symptoms from the blood loss, such as tiredness or shortness of breath, that to do procedure would/ could be high risk of causing new problems.

Despite the fact that ongoing rectal bleeding is troubling, that it would be more troubling to have a complication of the procedure. I guess this is where I was at before in many ways. So will wait and see.

I am due for followup CT scan of the area behind the rectum where there is a mass, so will first of all see what this shows.

I will be seeing my gyne/oncology on thursday, I was due for my 4 monthly exam, and I have developed a vaginal discharge. Well it is more just water.

In the mornings, I have basic water draining from vagina. Not the rest of the day.

Of course as is per usual, I have gone to the books to see what this could be. Although I will first see doctor, the thing I am worried that this can be is a vesicovaginal fistula, or a urethrovaginal fistula.

What that means is an opening between two organs, in this case, the bladder and the vagina, or the urethra (the tube that goes between the bladder to the outside).

Usually these problems form after a hysterectomy when the bladder gets accidently cut, a tract forms so that the urine goes directly from the bladder through vagina. The form that goes from the urethra to the bladder, is also caused from the surgery.

In developing countries these problems are usually caused during childbirth, because csections are more rare, and women are more likely to have long contracted labours, and the pressure from the head on the urethra or the bladder causes lack of blood supply to the area trapped, and an opening forms. In developed countries the more likely cause is from hysterectomy, and usually occurs within a few days of the surgery.

Radiation to the pelvis is another cause of this problem, and can occur anywheres from a few months to many years after radiation.

The bladder sits in front of the uterus after a hysterectomy, and if the opening is from the bladder to the vagina, depending on size of fistula (or opening), the women can either experience a continuous flow of urine from the bladder to the vagina, if it is the urethra, it is more “positional”.

I guess I am wondering if perhaps the reason i am only having this in the mornings is that during the night the bladder being on top of the vagina, it tends to drain that way, but in the day more the normal way.

One of the ways they diagnose this is by injected methylene blue into the bladder and then on vag exam looking to see if there is anything blue there.

I have no idea if this is what is causing my problem, but thought it was kind of interesting, and for those who read this for the medical stuff.... there you have it.

OK so I did not finish the blog ( did not have internet coverage)

So now am back in Eugene, have had hair do and saw my gyne oncologist yesterday.

She did not think it looked like a cancer had returned, and did not think it looked like urine was leaking into the vagina.

She said that the vagina was extremely inflamed though, and that perhaps the discharge was what we call in medicine, a transudate. That is when an area is very inflamed like perhaps a burn and it "leaks" watery fluid. There is no sign of any infection.

So she suggested that I take some pyridium ( a medication used as a bladder analgesic in patients with painful bladder infections), but pyridium also turns urine bright orange.

She suggested I take pyridium, and put tampon in vagina, and once the urine turns orange, remove the tampon and see what colour the discharge is then.

Well I did this..... and had so much pain putting it in, and then had to take a pain killer to take it out , it was excruciating to get it out. However the discharge did not turn orange like the urine, so despite the pain, I WAS able to show that it was not urine, and so the discharge was definitely coming from the inflamed tissues.

She said that she did not know what was causing and did not know how to treat it...period!

Bear in mind that she has no experience with hyperbarics, in fact, there is much that is not known about hyperbarics. SOOOOO my take on this is that the entire vagina is totally scarred down from the radiation. Radiation causes damage to the tissues by interrupting the blood supply.

Hyperbarics encourage the growth of new blood vessels in areas of inadequate blood supply, so my guess is that this is all a result of hyperbarics.. The question remains is whether it is good or bad. Is it attempting to heal the vaginal walls?????

I guess I do not know. So I have to figure out what to do next, will likely just wait and see for awhile to see if perhaps it might heal on its own.

BTW I ran 2 miles last week, and it went really well, so am going to try to get that going again.

Love

Janet

jankenb @ gmail.com

my winter garden

2010-10-29T09:26:00.000-07:00

Hi everyone

I finished my hyperbaric treatments on Monday of this week, and am doing pretty well.

The bleeding is still present but much less that before, from approx 1/4 cup a day down to about a teaspoon. Sorry, somewhat graphic.....

I am pretty much back to almost a normal diet. I just have to limit the amounts of certain things.... other wise I have more pain.

The testing that was done for Lynch Syndrome was negative, ie my cancer tissue did not show signs of lack of mismatch repair. I did end up doing a lot of reading about Lynch syndrome and they say that only 5% of families likely to have this genetic predisposition for cancer, have been diagnosed. So if you have any family members with an early colon cancer, (ie under 50 years old) OR an early endometrial cancer (under 50), you may want to look into this, it clearly could be life saving for some.

From the photos you can see how my winter garden is coming along. About 6 weeks ago I started several veggies in the greenhouse in flats, mustard greens, spinach, Kale, broccoli, cabbage...

Ken recently finished the high tunnel, and this week we got the plastic in the mail to cover it with, so I have planted all my seedlings in the high tunnel.

For colder weather it will essentially have two layers of plastic (ie when the temp drops down below freezing), and when it is above freezing it will only be one layer.

From the pics you can see that the entire thing is covered with plastic, and then we have also covered the raised beds with plastic, and I will keep the plastic off the raised beds unless it gets really cold. (we figure that this high tunnel cost about 150 bucks to build)

The plants all seem to be doing well inside, despite the plants outside starting the frump now.

I chose the 10 best basil plants and transplanted them into pots and have them in the greenhouse. I also have moved some of my tomato plants that were in pots into the greenhouse. The other 70 plants I have harvested the green tomatoes and they are in boxes in the dark, ....ripening.... I hope.

I have harvested all the pumpkins and made pumpkin puree and dried the seeds. I have made fruit leather from the puree. I have read that pumpkin has anti prostate properties. Not that I have a prostate, but there is one in the house.....

I am seeing the gastroenterologist next week, I had hoped to tell him that bleeding was stopped, because he was so doubtful of the hyperbarics, but not so.

I am so fed up with all of this, I am contemplating getting the laser treatments to stop the bleeding completely if this does not go away.

Anyways, have a great day...

love

janet

jankenb @ gmail.com

6 more treatments to go

2010-10-16T08:59:00.001-07:00

Hi Everyone

Have completed 3 weeks of hyperbarics and it has been very hectic, as for the last while I have been driving back and forth each day. I have 6 more treatments and I have to say that I do believe they are doing something. There is this fear of saying they are working for fear of jinxing the whole thing, but the bleeding has been MUCH less for the past week.

PLUS I have been walking long distances and it does not seem to have had an effect on the bleeding.

I am pretty much healed up from my surgery, the left breast is still quite sore, but surgeon said it would likely take longer to heal as the surgery had been much more intensive getting the ruptured implant out.

I just found out yesterday that though peace health had decided to hire me, but it was based on me getting hospital privileges, and though the credentials committee voted in favour of that, the medical executive committee would not allow me to apply for privileges.(because of my board certification status)

So was quite disappointed, however at a conference Ken and I were at last weekend, at least 4 different "entities" expressed an interest in me working for them. From a hospice director in Portland to a doctor asking me about joining his group, 2 nursing homes.... so I do have some options.

The genetic counsellor has requested that the pathologist reexamine my cancer tissues for evidence of "mismatch repair" MMR, which is the first step in determining whether I have the gene (or rather LACK OF) which causes Lynch Syndrome. I should be getting the results of that back on Monday and from there if that were positive, I would go on to genetic testing.

There are 4 subtypes of the mutation and so the first person in a family tested, they determine which subtype it is, and then offer testing the remainder of the family, for just that subtype.

So I will keep you posted.

I have canned about 30 jars of tomato sauce (got the recipe from the Barbara Kingsolver book "animal vegetable miracle"), as well as about 20 jars of other things.

I hope to can another 10 jars tomorrow of the tomatoes.

By for now

Love

Janet

jankenb @ gmail.com

hyperbaric 2.5

2010-09-29T15:45:00.000-07:00

Hi there

I have completed 3 of my “new” hyperbaric treatments. They are at 2.5 atmospheres and as such are about 15 minutes longer than the previous ones, for 2 reasons.

It takes longer to get to the higher pressure and down from it, and there is that 10 minute break where you breath air from a mask, this is 10 minutes in the chamber that does not count towards your 90 minutes. Because I am looking at possibly starting work again, I decided to listen to medical education tapes instead of movies, today I watched a movie. I think I might like the tapes better.

Since the treatments are in Portland we are having to do some “commuting”. Ken was off the first 3 days of this week, so we have been there together, and are driving back to Eugene now and I will drive back alone for treatment tomorrow afternoon, stay overnight and have a treatment early Friday and drive back to Eugene.

Ken and I are having a great time with long walks etc. Very odd thing happened on Monday afternoon we took dogs for a walk and I was wearing hiking boots I have had for years (they were away in a box, I just found whilst moving). We got about a mile down the road and all of a sudden one boot just litteraly fell apart, weirdest thing I have ever seen the rubber just seemed to all of a sudden disintigrate. So we turned around and headed back to the van and half way there the other shoe fell apart. So it was off to the shoe store as I only took one pair.
Yesterday we climbed up to the top of the multnomah falls, quite a hike. Then we went to Mcmennamins Edgemont winery where they were just crushing the first grapes of the season (merlot grapes in fact). They really were stomping them down. We tried all their wines and loved them all.

This Mcmennamins is a very large property that was once “the poor house”. I have to say in seeing it, that they really were nicer to “the poor” than they are now.

Althought I gather that the winery and the brewery and the distillary were not there then, it still is extremely lovely. They have rooms to rent, european style, with the bathroom down the hall. There are many different restaurants, and the rooms start at 50 dollars a night. So I am going to stay there on Thursday night rather than camping in the van. I am a little less comfortable camping on my own, than with Ken there.

I am including pictures of the hyperbaric unit as most people do not really have a sense for what they look like, heck I did not have a clue until I started.

Looks like I am ready for blast off....

Love

Janet

jankenb @ gmail.com

High tunnels

2010-09-25T07:21:00.001-07:00

Hi there

We have had a busy week, gastroscopy on Wednesday and trip to hyperbaric unit in Portland on Thursday. Gastroscopy showed I had NERD, I guess it is a new term for computer savvy people who develop heartburn..... NOT

It stands for Non Erosive Reflux disease. I gather that they have made this distinction from erosive reflux disease, because erosive reflux disease needs to be followed more closely.

You see people with reflux who have erosive signs at their lower esophagus, can develop a precursor to cancer called barretts esophagus. These people need to be followed more closely and biopsied to ensure that there are no signs of cancer.

Anyways mine looked great and he has suggested a different proton pump inhibitor, Protonix, instead of Prilosec.

Onwards to Portland on Thursday to see the doctor at the hyperbaric unit. That went GREAT, in fact they even had me scheduled for a treatment Thursday and Friday, but Dylan, our son was on his way to spend a few days with us in Eugene, so we decided to wait until Monday.

It was quite reassuring to meet with a doctor at the unit who clearly knew a lot about radiation injuries. She talked about many different types of injuries that she had seen benefit from the hyperbarics. It was interesting how she came to the same conclusion that I had about the bleeding I have now. You see this bleeding started the second to last week of my hyperbarics in the spring. She said it was likely that the hyperbarics HAD worked and started healing via angioneogenesis (new blood vessel growth), but it had only just started. So likely needed a few more weeks....

She said it was always hard to tell who would benefit, but she felt certain that I would and that I would likely also see improvement with the vaginal scarring that is now starting to bleed all the time as well. I will be treated with 2.5 atmospheres. Since this is a higher dose it does run a higher risk of seizures (because the oxygen level is so high, the seizures are from oxygen toxicity), you have to have an air breathing break half way through the treatments. Since the chamber is 100 percent oxygen, you breath regular air (usually about 21% oxygen) for 10 minutes half way through your treatment to decrease your risk of seizures.

Ken is not working too much this next month, so he will be able to come up with me for much of the month. They are quite flexible with the scheduling right now, so we will likely go up one day and have a late appt, and then an early appt the next day and home that day etc etc.

Well my peppers FINALLy started turning red. Well one of them did. The rest are actually looking pretty healthy, so hopefully the next few weeks will see some action. I have been researching "high tunnels" for the past several months as a way to extend my gardening year. Ken and I decided that the cattle panels we have been using would make for a very good support system, so I have included some pictures of the tunnel under construction.

I am going to drag all of my tomatoes and peppers that are in pots into this structure so we can have them longer into the fall, I have also started peas, cabbage, broccoli, beets and mustard, as fall crops, some of which will be also grown in the tunnel. I have started them all in the greenhouse to give them a head start, because this is a little late for starting fall crops.

bye for now love janet

4 sisters

2010-09-21T07:20:00.000-07:00

Hi everyone

Sorry to be such a whiner, after getting my cholesterol the other day I was down it just seemed TOO MUCH...for me. However over the past few days I have decided just to pick myself up by my boot straps and just do what I have to do.

They say to follow low fat diet.... which I have for years, however since last christmas I have likely done more poorly at that. They say to eat less animal products and I have been basically vegetarian for years, but over the past 2 months I have started eating meat because of all the bleeding I have had. They say I should have more fiber, but when I got this radiation enteritis, they said to eat minimal fiber. They say to maintain a BMI of under 25 and I am a bit over 25.

This is a BMI calculator http://www.nhlbisupport.com/bmi/ They say to exercise more, and I have stopped exercising over the past few months because it seemed to make the bleeding worse, and so I need to increase exercising as well. (in moderation)

SOOO I just need to lose 10 lbs, increase my fiber despite the cramps (that should help the bleeding too)... and stop eating so much cheese or else find a low fat cheese that tastes reasonable. Get out for a long walk every day... AND then in 3 months get it checked again.

I will hopefully start the hyperbarics in the next week or so and solve THAT problem. I saw my doc yesterday and now have a referral to go to the osteoporosis clinic at OHSU to talk to a specialist to see if I really have osteoporosis if it is only in the bones that were radiated, and if so what treatment would they suggest.

Some days it just seems like everything is going against you.... but all you gotta do is to sit back and figure out how you are going to solve each of those problems and then do it.

Two days out hunting for mushrooms always helps my psyche.

My latest preserving feat has been making fruit leather. I had about 8 cups of applesauce in fridge and needed to do SOMETHING with it, so I went out and picked blackberries, put the through the strainer (not necessary) and then spread the mixture out on parchment paper and put in the dehydrator 6-8 hours .... presto ...fruit leather...

THEN on Saturday I decided to do the same thing with the pumpkin. I cut open the pumpkin took the seeds out and baked the pieces. I then peeled them and put the "meat" into the food processor along with agave syrup, nutmeg, cinnamon , yoghurt and some apple sauce and dehydrated them and man are they good. Pumpkin is just SOOO good for you too, why waste something as healthy as pumpkins by cutting them all up into faces.

So now my next thing is eggplant. I grew them from seed in the greenhouse and have watched them in the garden all summer pretty much doing nothing, and suddenly they are producing by the ton....

Really not what I expected, I thought I was going to have to write off eggplants as something I can grow. I do seem to have a failure though. I have many many pepper plants, and they are all "red bell peppers" and there are many many green peppers on the plants, but none seem to make it to the red stage, they all just seem to rot. There is no way either Ken nor me can eat green peppers. So will have to do something different next year.

I have included a picture of me with my 3 sisters, drinking a bottle of wine Angies daughter brought back from Australia called "4 sisters"

Bye for now

love

Janet

jankenb @ gmail.com

Lynch syndrome

2010-09-18T07:37:00.000-07:00

Hi everyone

Well there just always seems to be something ELSE..... I am SOO frustrated, I went into all of this as a healthy person, an extremely healthy person. ...... well except for the cancer part. I get sooo upset that I seem to be getting further and further away from being healthy, yet I feel I have no right to complain, knowing that so many others have died of the cancer.

I had a very down day yesterday, Ken and I went to a cardiology conference (great conference by the way). Part of the program is that they have a cholesterol panel testing before the conference starts for any interested docs. Since I have not had that checked since before my surgery (at that time the anaesthetist commented that I had "an enviable cholesterol panel". Well not anymore. Despite following a low fat, low cholesterol, mostly vegetarian diet for 30 years (since my mother had a heart attack at the age of 52), my LDL is substantially elevated.

I am going to have to look into my mothers records, but she had a familial form of cholesterol problem, her father died when she was a teenager of a heart attack as did his father, (her grandfather). I guess I will need to be looking further into this. The suggestion at the conference was to follow a low fat diet, eat less animal products and lose weight.

That all being said, there may be yet another familial disorder I have inherited that may have caused my cancer. It seemed odd when my cancer was diagnosed, that my sister (3 years younger) had just had a hysterectomy for complex atypical hyperplasia, which is the precurser to the cancer that I had. I was sent for genetic counselling because my mother and grandmother both had breast cancer. Since both breast cancers occurred at an elderly age, and endometrial cancer is only weakly linked to breast cancer, no testing was done.

There is another syndrome called the lynch syndrome in which a family tends to have endometrial cancer AND colon cancers. The counsellor did not think there was enough of a tie here either.

I have a first cousin who died last year at the age of 43 of colon cancer. He was diagnosed around the age of 40. From the reading I have done (I learned a lot about lynch syndrome from the hystersister forum where several of the girls there have lynch syndrome as part of their endometrial cancer) I have found out that if a family has one member who develops colon cancer or endo cancer at a young age (under the age of 50), and there are two other cases in the same family who are siblings then this family could be a lynch syndrome family.

I guess the thing that got me looking into this, is that I only just found out this year that the colonoscopy I had in Bandon last year, a certain kind of polyp was found that is also linked to this familial syndrome. It was a villous adenoma, which is a precancer and of the type that tends to occur with lynch syndrome. I guess the thing I only just found out recently (my family never tells me anything), my sister Denise, the same one who had the endometrial precancer, had a colonoscopy earlier this year and they removed a precancerous polyp.

I guess I was just blown away that Denise and I both had precancer/cancer of the endometrium, and we both had precancer of the colon.

The other cancers associated with this syndrome are ovarian, upper urologic tract, gastric, small bowel, biliary/pancreatic, skin (sebaceous adenomas and carcinomas and keratoacanthomas), and brain cancers.

As in most other familial cancer syndromes, early age of onset and multiplicity of cancers have been considered hallmarks of Lynch syndrome. In registry-based Lynch syndrome series, the mean age at initial colorectal cancer diagnosis is about 45 years, compared to around age 65 for sporadic colorectal cancer, and some Lynch syndrome patients present with colorectal cancer in their twenties. Similarly, the mean age of uterine cancer in Lynch syndrome is about 50 years, which is about 10 years younger than the average age of sporadic uterine cancer.

My endometrial cancer was diagnosed when I was 52, but I had clearly had it for some time. My doctor felt it was a very young age to develop endometrial cancer, and my sister would have been approx 49 when she was diagnosed. Neither of us had any risk factors for it either.

Although it has been years since I have done genetics, this syndrome is inherited as an autosomal dominant, which I believe means that 50% of a carrier's offspring would inherit lynch syndrome, and of those 80% would develop cancer, most likely endometrial, or colon cancer.

I contacted my uncle (the father of my cousin Steve) to find out if he knew anymore about other family members with cancer. Turns out 2 of my female cousins, for two different families died of small cell cancer of the lung last year, but they were heavy smokers and this cancer is associated with that. Also one of my fathers Aunts died of cancer of the stomach, or something like that. The other thing I found out was that with Lynch syndrome the cancers/polyps of the colon tend to be more proximal, which means further up. My cousins cancer was pretty much as high as you can get in the colon, and my polyp and my sisters were also high up. The types of polyps that are more likely to be associated with Lynch syndrome are villous adenomas and dysplastic adenomas. (Mine was villous, and my sisters was dysplastic)

Anyways I thought this might be of interest in case any readers have family members with colon cancer at a young age.

Other news, I am scheduled for gastroscopy Tuesday morning. I have had stomach pain and heartburn for 2 months now, despite taking a double dose of two different OTC stomach meds, omeprazole and ranitidine.....plus quiting caffeine. I did have a gastroscopy a year ago in Bandon, but that test was not documented well, and from it, it is hard to tell where any of the biopsies came from as the notes say they were taken from the esophagus, but the pathology describes them as gastric tissue. So my gastroenterologist wanted to see what is going on now ( a two week course of one med regular dose SHOULD clear up any gastritis, esophagus problems)

Then on Thursday we are going to Portland to meet with the hyperbaric doctor hopefully to begin the hyperbarics at the higher pressure ASAP. I have been bleeding much more extensively and though my hemoglobin is still in normal range, it is dropping with each reading and my red blood cells have been below normal for awhile and are also dropping with each test.

The gastroenterologist really wanted to start treating my bleeding with laser this wednesday, (he said it would likely take several treatments to treat the large area involved), but I really want to hold out to see if I can get a cure with the hyperbarics. I am very anxious to begin treatments, because I am very anxious to see if it is going to work. The gastroenterologist said the

I guess the other reason I am looking at going to portland instead of waiting until the unit opens here in Eugene, is that while they are checking my credentials for this job I am waiting to find out, I might as well get treated, rather than start treatment at the time they may just want me to begin work.

On top of all of this, I was diagnosed with osteoporosis last november, and it was suggested I go on medications for that, with all that has happened with my stomach etc, I was afraid to, so I will likely get that looked at again, and try to find a better way to treat it, if I do actually have it.

I am SOOO Looking forward to being healthy again. Perhaps I am asking too much

by for now

love

Janet

jankenb @ gmail.com

family pictures

2010-09-16T07:44:00.000-07:00

Things are starting to settle, yesterdays post was written several days earlier.

We have canned 8 quarts of dill pickles one of dill beans, I have harvested all of my black turtle beans and they are just sitting getting that last bit of drying before I put them away for a cold winter nights black bean soup (perhaps AFTER I have done my hyperbarics).

I have made zucchini cookies, zucchini muffins and zucchini loaves as well as a huge pan of zucchini lasagna. The whole summer it has been ME AGAINST THE ZUCCHINIS.... every now and then they started creeping up on me and starting to get ahead, then I went into a flurry of activity to use them all up, and this time having been gone 10 days I was REALLY behind. But last night I used up 4 very small zucchinis on our pizza and right now "I have no zucchinis" in other words, I am winning!!!!

I have 8 cups of applesauce in the fridge that ken has been nagging at me that we have to so something about, however I have just won over the zucchinis, I need a few days to figure out how to deal with the last of the apples. (we dried all the rest) Perhaps I will try apple leather.

I never expected it but I also now have a large crop of eggplants, they took forever to start to grow, those cute little eggplants, so that will be my next thing.

We have had pesto every day for ages, I made a huge batch of pesto and froze it before we left cutting the plants back quite aways. Well they are back with a vengeance. The other night I told ken, do you might if we have pesto AGAIN........

Oddly enough he went on to tell me this story about a guy (in texas of course) who had just killed his wife and family in a rage.... that apparently started when she served him cold eggs for breakfast(not sure if he was trying to tell me something) (OK no pesto tonite)

I am sure you are all wondering about the tomatoes. Well I have been keeping up with them as well, making tomato sauce, we have about 8 pints of tomato sauce, I just cooked the tomatoes up and then put them through this very cool strainer that came as an attachment with my mixmaster and then cook it down until half the liquid is gone.

This weeks tomatoes, I am going to make actual sauce with basil and peppers in it. I have a lot to do this week.

I am really liking having very small breasts. I remember years ago looking at other women in public places and felt that I was pretty much the smallest one out there. The other day at IKEA I was looking around and once again felt the same. However major difference, back then it bothered me being different from everyone else, and now I relish in it. I think my days of activism changed me. It was very hard to get used to being one of a very small number who were willing to speak out directly against the war (in 2003) It was very new to me to be holding views that were held by only a very small group of people(perhaps I had always been like that, but never put it to the test)

So rather than hide my flat chest, or make it look larger artificially, I plan to flaunt it, cuz its "unique" :)

While up in Canada we spent a week in Kamloops for a family reunion, before the surgery, so thought I would include some pictures from there

Pictures of my whole family, ie sisters, and parents, pictures of Dylan Sara( his girlfriend) and Josh, and well the other pictures...

What can I say,.... I went to a rodeo with a camera....... (Dylans girlfriend is into horses etc)

By for now

Love

Janet

jankenb @ gmail.com

a week post op

2010-09-14T08:30:00.000-07:00

Hi Everyone

Ken and I are almost back to Eugene. AND I am so excited to see my garden, I have been dreaming about it.

All and all I think I have done well post operatively. The first day I was pretty sore, but I have done pretty well since then. I woke up from the surgery with an ace wrap (in Canadian :tensor bandage) around my chest, and two drains.

The way it was explained to me, he removed each of the implants and the capsules around them, leaving the entire area of raw tissue, and the purpose of the wrap is to keep the two sides of this raw tissue together with the hopes that they will heal together and not leave a space. The purpose of the drains is to make sure that all the bleeding and drainage gets removed, otherwize the fluid would get in between the two surfaces, preventing them from healing together. These fluid collections are called “seromas” and it sounds like they can be a real problem in healing.

So the drains are basically tubing about the size of IV tubing with multiple holes in them, placed in the operative site, and then stitched to the skin. At the outside end of the drain is a ball that collects the fluid and you can drain the fluid from this ball. (I guess it is a bit like a turkey baster, you squeeze it and it sucks the fluid up)

Anyways, they leave the drains in until the drainage becomes minimal. I saw the doctor again yesterday and he removed the drains.

He seemed to think that everything looked pretty good. To me it is hard to tell, lots of swelling and bruising, so time will tell what it will look like. I have decided that I think I like this new “flat” look. Seems like much lower maintenance

I think that this is going to create a huge gap in my closet.

I went through this phase 10 years ago when I had them put it, and I bought all kinds of low cut tops etc, but the funny thing, for the most part, it took me years to become comfortable enough to even wear a tighter fitting top, let alone something very low cut. So now there will really be no reason to wear any of this stuff.

It has been kind of interesting since I “came out of my closet”,......

Several people have commented about why do women in our society feel the need to do this sort of thing. I guess I have never seen it like that. I always saw it as much the same as I would dying my hair, or having peirced ears, or even wearing a different type of clothing. It is always “ I wonder what I would look like in that”. I have to say I only did it for me, for no one else but me. In defence of my actions, I would have to say that there are many things we do in life to alter our appearances. I for one have almost never worn makeup. I guess I just so much wanted to have breasts, and though looking back, I can see it was a mistake, at least I know now that like so many things in life.......... “That as they got closer were not what we visioned at all”

Now as I write this I realize that one of my songs describes this much better than I can here. So I will enclude a link to that song.

ilver dollars

Written by: janet bates

Silver dollar Janet Bates 2007.…..
How many times have we chased silver dollars
That slipped through our fingers like slow flowing water (does)

How many dreams have we seen in the distance
That as we got closer they were not what we visioned at all

How many plans have we changed by the time
They got close to fruition, our plans then are different

So many times have I thought of what might have been
Looked at was has been, glad of the life that I lead

Ads I'd seen
in magazines,
thought that could be me
It's only now I can see

So many things that I thought that I wanted
I found what I wanted only, what I already had REPEAT

You cannot learn too soon
If you reach for the moon
Even though its what you wanted
It won't fit in your pocket

Stars may seem bright
As you gaze out at night
In the light of the day
They just all go away

….And when you dream
Just of pastures of green
They will all turn to brown
When autumn comes around

http://janetbates.com/music.html open the "for all of his wealth" album and scroll down to silver dolllars
there is a downloadable form there.

love Janet jankenb @ gmail.com

post op 3 hours

2010-09-08T19:21:00.000-07:00

just a quik note to let y"all know i had surgery today, i am fine, and "nurse kenny" has come out of retirement to give me top notch care

I am going to try something unique for me, and I am just going to lay here until tomorrow and do absolutlely nothing, which is what the doctor said to do.

Doctor had some trouble getting the ruptured implant out, as there were "issues", but as you know....... I will give you ALL the details tomorrow or the next day.

Love to all of you and thank you so much for all the wonderful notes I have received.

Love

Janet

jankenb @ gmail.com

What a difference a year makes

2010-09-03T15:11:00.000-07:00

Ken and I took the same trip this year as last, and thought we would stop at the same little place beside Duffy Lake to take the same picture again.

What a difference a year has made........

Well somethings do not seem to change that much at all. I think that Ken looks like he just changed his shirt for the second picture.

AND the weather changed a bit too.

Just thought I would share the photos

Love

Janet

jankenb @ gmail.com

back in ca na da

2010-09-02T09:29:00.000-07:00

Hi Everyone
Ken and I (and the dogs) are on our way to Whistler, from Vancouver. I met with the surgeon today and the surgery is planned for next Wednesday. I feel so much better that I have waited to have the surgery with this doctor. He even showed me a little video that he has on his phone (that he uses when he lectures) on how the implant is removed without anything being left behind.
He specializes in reconstructive surgery after mastectomy. He seems to think it will just look fine once he is done. The first surgeon basically told me how horrible it was going to look and STRONGLY encouraged me to just replace the implant with another one.
I am so glad I decided not to go with him.

I am also booked to be starting back in the hyperbaric unit, (the new one that will be opening at Riverbend hospital) in November. I will be one of the first patients in this new unit. This unit goes up to 3 atmospheres (however I will be treated with 2.4 atmospheres.
I finally heard back from my oncologist about my PET scan and he said that the increased take up of the dye in the base of the tongue was most likely because I was talking between when the injection was given. Active muscles take up the dye in greater concentrations. Can you imagine me talking too much?????
The tech at the PET scan place was telling me that that is why whey have this little room that you basically sit in the dark after the injection. He said he had a guy once that brought in a computer game and sure enough all his arm muscles “lit up” on the scan.

I have had an incredibly exciting week for an extremely “unexpected” reason.
I got a call from the physician recruiter from Peace Health to ask if I would be interested in a position as hospitalist at the old Sacred Heart hospital (which is now called the University District hospital)
I was totally shocked, and said that I never would have expected that they would ask me to work, being as Peace Health has a bylaw against hiring non board certified docs.

Well I guess Peace Health ( which is a large non profit organization that owns several facilities) They have two “campuses” in Eugene, one at Riverbend (RB) which is the new hospital and the other at the old Sacred Heart (University District)(UD).

All the hospitalists rotate through both facilities, but since the unit at UD is only about 35 beds and Riverbend (RB) is much larger, none of them spend much time over there at UD. The unit is mostly geriatrics, with a high percentage of Alzheimers patients and all the unique problems that they get.
They have been thinking of having one or two physicians JUST work over at UD They noted on my resume the 9 years I cared for all the patients in the locked Alzheimers unit at Heritage Place, combined with the 3 years I worked as a hospitalist in Bandon and thought I would be perfect for the job. So I spent all day Monday being “interviewed”, and then a dinner to meet me and Ken at one of the doctors house.
It is not totally straight forward but they have found out that there is in certain circumstances a way around the bylaws if a physician came along with the kind of experience I seem to have.
They are also short of physicians in the hospitalist group, as a few of them have recently left. I am pretty excited about this as from all I can see this job could be my “dream job”, the one I left in Bandon, without the politics.........

If it does not work out, that will be OK, I STILL have my 73 tomato plants......

It was extremely hard to leave my garden, and in my “notes to self” book that I need to write about this years successes and failures, a few paragraphs will definately be devoted to “when NOT to leave the garden”.
I would say that the first 2 weeks of September would qualify. I have canned 9 pints of tomato sauce, 5 pints of dilly beans, and 5 of dill pickles. We have dried many bags of sliced apple and one bag of dried mushroom. I picked every tomato that had even the faintest red colour to it, to bring with us on this trip.
It may not have been the greatest time for surgery, but
Ken and I have this idea that perhaps getting this done AND the hyperbarics in November, perhaps by Christmas I will be perfectly healthy.

Maybe I can start running again then
Love
Janet
jankenb @ gmail.com .

another operation

2010-08-25T09:14:00.000-07:00

Hi there everyone

This blog is one that I have tormented over for a very long time, ie whether or not to write it.

However since I have always seen this blog as both an accurate update on my medical situation as well as a means of explaining medical issues as they arise, to further the readers medical understanding, I feel compelled to also share my current situation with my readers. I will be having an operation in about 2 weeks for a problem I can only describe as "self induced". I am sharing this only with the hopes that I might spare someone else needless procedures and pain.

It is a very personal situation, but I feel I have shared a lot of stuff thus far, why not this?

Part of the reason for my trip to Canada next week is to have surgery to remove breast implants, one of which has ruptured and is leaking silicone. I was advised over a year ago that this needed to be removed, but with being on chemo, and also having a low blood count, I opted to delay this until now.

AND NOW THE STORY.......

I am telling this with the hopes that someone might read this and perhaps opt NOT to do this.

10 years ago, whilst training to do that Boston marathon ( this is a marathon that you have to qualify for, which means you have to have achieved a certain time in another marathon), I subsequently lost a lot of weight. In doing so lost what small breasts I had (or so I saw it).

At the time, being inundated with Victoria Secrets catalogues etc I decided I wanted to look like those models, well at least be able to fill out the clothing. ( I should add here that I have long believed that Victoria Secrets is likely responsible for MUCH of the whole breast augmentation craze)(just a thought)

I found out that having a breast augmentation (breast implants) was not a huge procedure. I went and saw a surgeon and he also agreed that I could have the procedure done under local anaesthesia (not how it is usually done, but hey, I did not want to risk my life with an anaesthetic). I had saline implants put in and immediately developed capsular contraction of the worst kind.

AN EXPLANATION: When a foreign object of any kind is inserted into the body, the body forms a capsule around it. Capsular contraction is when this capsule shrinks and forms a tight constrictive wall around the implant, making it as hard as a rock and quite painful.

Now I should have learned at this point that perhaps I was not meant to have implants, however I felt still that I wanted to have breasts....

So I found a surgeon in Portland who would repair this, and since I had had capsular contraction, I would qualify for silicone implants.

Again I had the surgery under local anaesthetic. He removed the capsule around the implant and the implant and put in silicone implants. I should add here that this is all placed under the muscle of the chest wall. True breasts sit on the outside of the chest wall muscle, but to get a better effect, often breast implants are placed UNDER the pectoral muscle.

Well things went well for 9 years and I really had no problems..

Last June amidst chemo and the fears of this cancer, I went to see a surgeon about having a bilateral prophylactic mastectomy, (my mother AND my grandmother had breast cancer and I was NOT wishing to go through this cancer thing again) I was quite emotional at the time.

The surgeon said that at that point, I was more likely to succumb to the endometrial cancer than breast cancer, so she would not consider the surgery until at least a year after my treatments. She did order an MRI because she felt a lump.

The MRI showed that the breast implant was ruptured, but that it was still contained in the capsule.

I was in the middle of chemo and radiation at the time, so nothing I could do about it.

I did see a plastic surgeon in the fall about removing it. He advised removing them and replacing them. I found that he was quite dishonest about the whole situation and decided not to have the surgery. He had described the surgery he was going to perform, and I signed the consent. I later went for my presurgery appointment and in reading the consent in detail, I found that the surgery he had described to me was NOT the surgery he had put on the consent.

This was around the time that my radiation problems began so I did not do anything about it. I DID start reading though.

I found that the ONLY way to totally get rid of the silicone was to remove the implant AND the capsule enbloc which means to remove the whole thing as one. This not at all what the surgeon here had planned.

To make a long story short, the closest plastic surgeon that removes the implant AND capsule as one is up in Vancouver BC, and that is why I am going there for the procedure.

I thought I would also outline some of the things I have learned about breast implants that I think more people should learn.

Over 50% of women who have breast augmentation (breast implant insertion) require another operation. Bear in mind that the surgery is expensive and many women save up for the operation and cannot afford to have surgery to repair whatever the problem is. The other situation that often comes up is that while someone might be able to pay for the surgery, when the time comes that they need it repaired, they are in a different financial situation..... ie retired.

Of asymptomatic women (women with no symptoms), at 10 years 50% of breast implants have ruptured. (saline implants deflate immediately when they rupture, but silicone implants remain as a gel inside the capsule) So my situation is not unusual.

Once ruptured the silicone can leak out to various parts of the body.

The studies done years ago disproved that breast implants have anything to do with rheumatological problems, HOWEVER women with ruptured implants were never studied, so it is unclear what happens once they rupture.

After you have had breast implants for a long time the shape of your chest changes somewhat in that having them removed you will be much smaller appearing than you were to begin with.

You cannot get private health insurance if you have breast implants. I was refused because of mine. I have long said that the reason I was refused was because of the vaginal bleeding, but what happened was that the vaginal bleeding made the insurance company look closer at my files, and the fact that I had breast implants made me uninsurable. Fortunately being in Oregon they have a plan for those refused insurance for a medical problem.

Most states do not have this.

SO there it is.... I have revealed all.

I hope that in reading this someone else can pass on this info. I will more than likely add other info about this as I remember it.

The cheapest way to deal with all of this is to throw out all the Victoria's secret catalogues. Kind of funny, after my sons became teens, somehow the VS catalogues just disappeared on their own.

Janet

my garden

2010-08-21T10:04:00.000-07:00

I saw the ENT doctor yesterday, and he said that the redness at the back of my throat/tongue, had pretty much resolved and that he did not feel that this was a cancer, more an inflammation from the sinus drainage. This is my basil garden.

Crook neck squash, green beans, apple tree

August update

2010-08-16T09:32:00.000-07:00

Hi Everyone.

Been awhile since I wrote, life has been hectic, with many back and forth trips to Bandon etc. Ken and I are finally back together in the same place AT the same time.

We are on our way to Llamapalooza, which is a small "festival" some friends of ours have out at Middlecreek (east of Coquille). It is at the studio that we recorded our first cd at. We are looking at recording another cd out at this studio in the fall as well. We are performing again at Bullards Beach amphitheatre on August 21st at 7pm.

As far as my health, last time I posted I described the increased takeup on the PET scan from the base of my tongue. One of the faithful readers of this blog just happens to have a husband who has just completed chemo and radiation for tongue cancer, so she urged me to at least have it examined by an ENT (ear nose and throat doctor)

So I did.

In order to see the base of the tongue, you need a special scope that uses the same technology as for a colonoscopy, fiberoptics.

They numb the back of your nose with spray, then insert the tube down the back of your nose. ( its not as bad as it sounds). I had the same thing done a few years ago, to make sure I was not abusing my vocal chords with my singing.

He looked down and said that the base of the tongue and the area around were red, but he said it did not look like cancer. (he could not say for sure)

So he basically gave me 4 drugs to treat the problem (whatever it is) and then suggested he have another look in a few weeks (this next Friday)

Well the drugs were an antibiotic, a nasal steroid, an oral steroid and mucomyst which thins secretions.

I took the antibiotic for 4 days and developed severe diarrhea, the nasal steroid gave me nosebleeds.

We went out for dinner the 4th day of the diarrhea and I stopped at the pharmacy on the way to pick up some lomotil to stop the diarrhea. It occurred to me that this whole story is somewhat like the song:

There was an old lady who swallowed a dog, I don't know why, she swallowed the dog, she swallowed the dog to catch the cat she swallowed the cat to catch the mouse, she swallowed the mouse to catch spider that riggled and jiggled and tickled inside her.............

SO hard to know when to say "enough already!!!"

I have noticed that I do wake up during the night often with what seems to be drainage down the back of my throat. I have never thought that I had allergies, but perhaps I do, after all Eugene is the allergy capital of the country apparently.

If this is due to allergies, then what I have is what is known to most as post nasal drip and the constant drainage from the sinuses causes inflammation at the back of the tongue and throat.

So I have started to take the allergy meds, just to see if this improves the situation and clears up the redness at the back of my tongue, so I can forget all about cancer.

On the endometrial cancer front, I had a followup CA 125 done 6 weeks after the one that was a bit elevated and it was back down to 7, which was a huge relief to me.

The rectal bleeding is pretty stable, it is not getting any better, but it does not seem to be getting any worse. I have not heard back from the hyperbaric doctor yet, but he DID say he was going on holiday. That suits me well, as Ken and I have a trip up to Canada planned for the first few weeks of September.

My garden really is a dream come true, I just love watching all those different things grow. I recently purchased a canner, more as a defensive move than anything, seeing all of those tomatoes starting to ripen. I just know that one of these days there is going to be dots of red all over my yard and I am not going to be able to keep up. I have used the canner once, as we had so many green beans, we decided to situate ourselves squarely amungst the group known as canners BEFORE the tomatoes ripen. SOoooo much harder to perform new tasks under pressure. So the beans were the dry run. We pickled them.

I feel that I am at least at "a tie" with the zucchinis finding many recipes to use them up with all the basil I have grown. The zucchinis I have are seeds from Italy (where they can guarantee no GMOs) and are much more tender even when they get to be huge. The skins are still tender too. Monday I have set aside to make zucchini/turemeric bread. Hope it is not too hot.

I have been meaning to post garden pictures, but with all the back and forth between Bandon and Eugene, the camera always seems to be elsewhere when I am ready to take a picture.

a better day

2010-07-29T06:11:00.001-07:00

Well I guess it has been awhile, but a few things have managed to sort themselves out in the meantime.

My CT scan done about a month ago, had questioned an area behind the rectum where there appeared to be a mass, and he suggested a PET scan. My previous CA 125 had also gone up from 6-9.

Well I saw my gynecologist who checked the vaginal area, and also took a swab (essentially a pap). The Pap was normal.

I had the PET scan last Tuesday. A PET scan is where they inject you with radioactive glucose and it goes and concentrates in areas where the highest metabolism is going on. When it concentrates in spots, it can indicate an early cancer. So as far as xrays, it is the one test that can pick up a cancer the earliest. As expected it can be falsely positive, so results must be taken in context. Mine did not show any areas of concentration anywhere except the back of my tongue, which is hard to know WHAT that means. The radiologist was unsure if it was just "physiologic", which would mean part of the normal bodies functioning, but he suggested an exam. So the PET clearly showed that whatever is around the rectum, is not a cancer.

PLUS I got my recent CA125 back ( which was 6 weeks after the elevated one) and it is back to 7.

So I am feeling pretty good about that. I guess I said I was not too worried about it, but once all this came back as normal, I have this huge weight lifted, so I know despite what I am having, it is not cancer and that is the main thing.

I went back last week to see Dr Barnes who is the infectious disease doctor (who also has a specialty in hyperbaric underwater medicine) He was the doctor who originally sent me to the hyperbaric treatments. I really wished I had gone back to see him in follow up.

I explained that I had had daily rectal bleeding now for almost 6 months. It started towards the end of the hyperbaric treatments. I said that I had seen 2 gastroenterologists who had suggested treating the rectal area with laser and that I was concerned because a third of people treated with laser develop ulcers in the rectum, which with the decreased blood supply are very hard to heal. He was in total agreement and upon looking at my colonoscopy results said it was clear that I should have done a few more weeks of the hyperbarics at the time. I was not all convinced that the doctors at the unit were all that well versed on radiation injuries.

The unit here in Eugene only goes up to 2 atmospheres, and Dr Barnes said that it is now fairly standard that all radiation injuries are treated at 2.4 atmospheres. (stronger treatment)

My friend who had the radiation rectal bleeding healed totally with the 2.4 atmospheres.

He is suggesting an additional 4 weeks (20 treatments) at a full 2.4 atmosphere chamber.

It was interesting because Dr Barnes recently went to a conference where the head doctor for this diversified systems ( essentially the company that owns about 200 hyperbaric clinics around the US), told him that it was "protocol" for all radiation injuries to recieve 2.4 atmospheres, yet the unit I went to which is owned by the diversified systems, treated me with 2 (that is as high as they go there)

So anyways, with vacations etc, dr Barnes has been unable to get ahold of the doctor for the portland units, and now he has also gone on vacation, so will likely not be doing anything for the next few weeks at least.

The really cool thing is that in November Eugene is getting a full hyperbaric chamber that goes all the way up to 3 atmospheres for treatment of carbon monoxide poisoning. It will be at Riverbend. So I have to decided whether to wait until November when it would be SO much easier than going to Portland, or whether doing it sooner would mean a better chance of a cure.

I have not written for awhile, I guess I really was getting down about this whole thing, and seeing the doc in Portland really was a waste. So between feeling that I had reached a dead end with regards to the radiation injuries, and worrying about the cancer I have been pretty depressed. However this week things are really looking up, starting to settle.

I went back to Bandon last week, and did a clinic at Heritage place and saw the people who have a hard time getting to the clinic to see doctor, and I JUST LOVED IT. So I think that I will do that every 2-3 weeks. Ken and I will go over to Bandon, and I can do a clinic, and then we can go mushroom picking, or picking up large rocks on the beach.

We performed at Bullards Beach amphitheater on Saturday night and will be again on August 21st. It was a GREAT show. We have also just got word that we will be performing at the Eugene celebration on August 28th.

My garden has been my real joy this summer, I guess last summer I wondered if I would ever have a garden again, and presto, here is a year later and wow.

The tomatoes are just beginning to ripen, they have been kind thus far, in that they have chosen to do it one at a time. The zucchinis are not quite so kind, but I have been creative and managed to "keep up" with them. Now I really know how to grow basil, I have gone out daily now for at least 10 days and picked a large bowl of basil. I have black beans and green beans, all growing like crazy. I harvested on barrel of potatoes as they were turning yellow, and got a measly 6 lbs of potatoes. The second barrel I have done with seed potatoes and it looks MUCH healthier.

I got a great garlic crop, I planted last October and ended up aith a fair crop of garlic (last fall I really did not amend the soil at all, we had just taken ownership of this place and had no tools etc here yet)

Next year I will have to label better. I planted SO many things in the greenhouse and felt it would be obvious which was which, and so this plant that is currently taking over my cattle panels, which I thought was canteloupe, turns out, is pumpkin.

I have 2 productive yellow squash plants, and had a great lasagna last night with zucchini and yellow squash.

Mother earth news had an article a few months ago that said to plant your winter squash where you had harvested your garlic, so I started several types of winter squash in the greenhouse and this time I DID label, but the labels washed off and so I am still in the dark about which winter squash is taking over my previously garlic garden.

I have never managed to grow cucumbers either and they are SO CUTE.

With the peas, I have them growing in shadier places and have been planting them every 3 weeks or so. I go out daily with my little glass container and pick what peas are there, shell them and pop them in the freezer until I have enough for a meal. Since my GI track does tolerate cooked things better, this works better. (we have always just eaten them off the vine)

And peppers are doing great, I have several small peppers just starting out.

I have to say this is all a total amazement to me to see vegetables just coming out of the ground, so efficiently.

We have had many meals of Kale, I think kale is the reason, though I am bleeding all the time, my blood count has stayed the same, I guess because it is SOOO high in iron.

A guy is coming today to put some xtra windows in our greenhouse. For some reason the windows are not on the south side and I figured it would get so much more light with a few more windows, I will try to get some before and after pictures of that.

bye for now

I guess I am writing less often with less to say

Love

janet

jankenb @ gmail.com

oregon country fair!!!

2010-07-09T07:44:00.000-07:00

Hi Everyone

Thought I would update you as to my recent visit with the gastroenteroogist, as well seeing the gynecologist.

We went up to Portland on the first of July (Canada day), and my first take home message from my first “second opinion” is not to get the first opinion to refer you to the second opinion. This guy basically read the letter from the first gastroenterologist and really asked me nothing, no history etc etc... That did not stop me from adding my own, but I did leave feeling rather unheard. I have 2 gastroenterology problems. The radiation enteritis, which is the radiation damage to the small bowel that makes it hard for me to eat any food with fiber, I get nausea and abdominal pain, which has gotten worse lately. My other problem is the rectal effects of radiation, which involves rectal bleeding which seems to be getting worse all the time. It is going to need some form of treatment soon, I am just fearful of the treatments the previous doc had suggested.

So this doctor asked me which of these problems is more of a concern to me, and I said that the small bowel enteritis, and it was clear that the OTHER problem is more of a concern for him. He seemed to think the rectal problem needed to be treated soon.

He did suggest that he felt the better test for the radiation enteritis, is a small bowel followthrough, which is a barium xray where they follow the barium on a screen with technology called flouroscopy. It is an older form of xray, used before we had CT scans.

CT scans are just a second in time, so would not show any functional problems, whereas the barium small bowel followthrough will show the function of the small bowel.

So I am going for this test tomorrow in Portland. He has said he wanted to done there where he could go over the films with the radiologist at OSHU. You have to fast for 8 hours before the test and it can take up to 3 hours.

ALthough the treatments he suggested for the rectal problems are the same as the other doctor, and he did admit that the treatment often has to be done over and over again and can cause rectal ulcers which take forever to heal, HE DID say he would work with me with regards to the higher strength of hyperbaric oxygen treatments. However like the other gastroenterologist, he really was not familiar with it.

The thing about getting the rectal area treated with the heat argon, that still leaves the small bowel area, and if I were to get the hyperbarics, it would be treating both areas at the same time.

I will be hearing from him after this test tomorrow.

I saw my gynecologist this morning about the vaginal bleeding. She said it all looked OK, except that the vagina was getting shorter and narrower. It is essentially scarring inwards. I have the dilator and try to use it several times a week, but I guess it is just not enough.

July 9th

This blog is taking me awhile to write, but now I have been for the test at OHSU and I am back.

I have not yet gotten the results back.

We are getting ready to head out the the Oregon Country Fair (OCF) tonite.

I went out to the fair with Mark yesterday and it is totally amazing, the day before the fair begins it is already fully functional. Most of the booths are open and in business.

Ken is working at the university today, so we will be going in after he gets off.

Josh arrived from Canada yesterday and WOW, he is appearing quite "svelt" . Now as I am writing this, he is "off to the fair" for his first real experience there. (he will likely never be the same) I did tell him not to take pictures of scantily clad women without asking them first :)

Our band is playing on the blue moon stage at 11 am tomorrow ( Saturday) and 12:10 on the Shady Grove stage on Sunday.

The weather has been in the 90s for the past few days, something Ken and I have not experienced for many many years. I WILL have to dig out summer clothes that have been sequestered away for the 13 years of living on the coast, seldom even wearing shorts in the summer.

My garden has just taken off in this weather, with my cantaloupe starting to climb the cattle panel trellises , and we have had several meals of zucchinis already.

We have discovered a quite a unique way to use up a lot of zucchini, grilled zucchini pizzas

I use the barbeque to saute zucchini and mushrooms and fresh thyme, and then add a little balsalmic vinegar (I make sure that the mixture is cooked long enough to get rid of most of the moisture)

Then the dough I make into the shape of pizza and put oil on both sides, put on the grill until it is bubbling (about 2 mins) then flip it, and put the topping on the pizza and then tomatoes and cheese and put the lid down on the barbeque and cook for about 4-5 mins (until the cheese melts). I know everyone is always looking for clever ways to deal with zucchini this time of year.

I still have about 70 tomato plants but thus far, none have ripened, I expect that to change over the weekend.

Well this is our dog song "IT IS SOOO HARD TO BE A GOOD DOG"

Hope to see some of you at the fair this weekend

love janet

jankenb @ gmail.com

magnificent morning

2010-06-27T07:53:00.000-07:00

Hi Everyone

I thought I would share a few photos of my garden today, and since a few things are not behaving very photogenic today, I will likely share a few more when the GET more photogenic (ie...grow)

This morning, I got up, picked myself a bowl of strawberries, raspberries and picked a few cherries off the tree. I am limiting myself to 4 cherries a day because they have such a thick skin, and the tree is only ripening about 10 a day and that leaves 6 for Ken.

I seem to be doing well with the strawberries and raspberries.....yea!!!!!

There were strawberries growing all over the place here, on the ground in areas they were not getting the best light, so I have been gradually digging them up and planting them in a cocophany of containers, many of which I was going to get rid of.....old garbage bins, unused plastic containers etc. (if you click on the photo you can see a bigger version of it)

I have then stacked them all on this lovely bench that Ken made for our greenhouse in Bandon.

So it is fun to just pick the strawberries standing up PLUS the snails have further to climb to get them.

The potatoes in the first bin look almost ready to harvest, the second bin has a month to go, I figured I would harvest the potatoes and then replant the barrel with a new set.

SO we can have early potatoes now and leave the rest for the fall.

You can see from the photo at the top, how much fun Ken is having with the cattle panels. This particular "invention" is for growing the grapes, to trellis them along. WHen we got home yesterday, there was someone in front of the house taking pictures of it. yea ken

I will try to get better pictures of the 70 tomato plants later when I can ask Ken how to change the settings on the camera. (Ken is working in Bandon today and coming back tonite)

Well I got the CT scan report when I was in Bandon, and it turns out that the doctor who gave the verbal was not the one who did the final read.

The one who did the final read has described a nodular density behind the rectum, that is 2 cm by 2 cm. He says it was also there in January and a bit larger then. He is suggesting a PET scan.

The only problem with this is that the doc who read the scan in January said it was normal.

So when I went the gynecologist in January, and the gastroenterologist they were under the impression it was normal.

I really do not know if there is any significance to this. I THINK my first colonoscopy had a polyp removed in that area that was considered precancerous, but the colonoscopy this time did not show anything. In my thoughts, I am wondering if perhaps I might have bled behind where he took the biopsy and there could be a hematoma there now. ( a hematoma is essentially a blood clot that forms in the tissues and once there it stays there, it just very gradually gets smaller and harder)

I have not heard from Dr Cook about the scan, he IS the one who ordered it. So will see whether he decides to go ahead with the PET or not.

A PET scan is a test that really just is intended to pick up a cancer recurrence early. They infuse a radioactive labeled glucose molecule and it concentrates in areas where cancers are, as cancer cells require more glucose.

I am a bit concerned about this because I am bleeding more all the time, rectally.

I AM seeing the gastroenterologist on Thursday up at OHSU, so the timing could not be better.

I am looking at my options with regards to work here, and there are not any, and that is pretty much OK with me, however I would like to work just a little. This past few weeks Ken hurt his back really badly. He actually had to call in sick to work at the university because he just could not move. He is much better now, but it did scare me a bit because right now we are totally dependent on Ken being able to work. Our health premiums alone are 1100 a month, not to mention our loan payments. We are just fine as long as Ken can work some. (everything will be fine when our house sells in Bandon)

So I am thinking I am going to join Dr Gail McClave with her clinic and do just one day a month, seeing her patients out at the "nursing homes", Heritage place, and Harmony estates. (they are not really nursing homes, but everyone calls them that)

This is actually what I have done for years, and it would be great for me to do it in conjunction with Gail, she is unable to get out to see people at the facilities and many of these people cannot get to her office to see her.

Well back to gardening today. We are going to be in Eugene now for the next several weeks.

Really looking forward to the Oregon Country Fair http://www.oregoncountryfair.org/quick_visitor_guide.php

We are performing there on Saturday and Sunday.

Bye for now

love

janet

jankenb @ gmail.com

Normal CT scan

2010-06-22T07:47:00.000-07:00

Hi Everyone

Just wanted to let you know the preliminary results on my CTscan.... YEA

There was no evidence of cancer. Some non specific soft tissue changes in the rectum, which I presume is the colitis/proctitis that is causing the bleeding.

On these surveilance scans they check the chest, abdomen and pelvis....

So I am quite relieved. I will likely have the ca 125 done in one month to see which direction it is going and if is still going up, I will likely go and see my gynecologist/oncologist.

I managed to run 13.3 miles on Sunday, which is a half marathon. It is quite different running long distance and clearly takes organizing, as I am only able to drink small amounts of water at a time with out the cramping, so it was good it was not a hot day, in which case I would have to drink more than my stomach can handle. Over the years when I get beyond 10 miles I eat power bars, but even a small part of one immediately sent my stomach into cramps, so will have to get the "gu"........ which is a thick pudding like energy alternative for long distance runners.

I used to use it years ago and got so sick of it I switched over to powerbars and have always been able to eat them whilst running.

We are playing at BREWED AWAKENINGS on Friday night at 6:30

Ken and Mark and I, and we are being joined by Jaime Sterling and Rick Franke.

We had our first zuchinni from our garden two nights ago..... likely the first of "too many"

Love

Janet

jankenb @ gmail.com

stolen compost

2010-06-19T07:38:00.000-07:00

Well life in Eugene is going great. We decide on a few errands we have to run and then get on our bikes and try to get them done. Yesterday we had to pick up some wine that did not get delivered at our house (because we were doing errands), at UPS. From the map it looked like it was at the university, or in the area. Once there we realized it was quite a bit further south, so our errand bike ride took us about 20 miles. On the way back, I fell off my bike. (this is not unusual, in fact quite a regular occurance. We used to have tandem bikes and the boys used to fight over who had to ride with me). Anyways at the time Ken was a bit ahead of me and a guy came running to my aid. I was not hurt, just a skinned knee, but when the bike fell, the contents of my pannier poured out on the sidewalk. There is a place down by the Knickerbocker bridge that I have found that has great composted oak leaves, which I have heard are good for blueberries, so one of my "errands" was to load my pannier with "compost". In effect stealing compost.....

I think that the guy must have thought it rather odd to have a pannier full of dirt. I guess I got caught red handed.... or red kneed...... with my pilfered compost.

So you can imagine then why I run, instead of cycle, you just let your mind wander for a minute and WHAMO you become "one with the pavement"

Likely the most painful part of it all was that, since the bike ride was so long, I got hungry and ate a couple of power bars and was sick the rest of the evening....(they had nuts and raisins and oatmeal in them)

My abdominal pain has gotten worse lately and I have been taking low doses of pain killers.

I take a half of the lowest dose of percocet at least once a day now. It just settles the burning lower abdominal pain that seems to be there a lot of the time now.

I have also started bleeding rectally more, passing blood several times a day now.

It has become a cycle, the bleeding is worse when my bms are hard, so I try to increase my fiber and I get more abdominal pain, but when I do get more fiber in, I have less bleeding.

I have this feeling that all of this got better when I was on the hyperbaric treatments, but gradually came back and now I feel it is worse than before.

I am seeing doctor at OHSU on the first of July, and am quite apprehensive about that hoping

he at least is interested in trying to help.

The last gastroenterologist basically really had nothing to offer for the upper abdominal problems and he said if the bleeding got bad enough to require a blood transfusion he could go in with heat argon and essentially cauterize??

I guess I am quite fearful of this treatment, is because it seems as though burning an area that is bleeding (bleeding because it does not have enough blood supply) just seems wrong. The tissues are bleeding bacause they do not have the blood supply to heal, and you cause another injury.........? I have read about the side effects, .... rectal ulcers, which basically cause chronic pain....... and if a hole is made in the bowel, then you get peritonitis, infection throughout the whole abdomen.

I guess what I am hoping for is another trial at hyperbarics, but with the proper dose. The EUgene one only goes to 2 atmospheres and the ones in portland go to 2.4

But we will see what he says.

I did have a breast MRI last week and it was normal, which is a huge relief, I have worried about that for quite awhile. My mother and grandmother had breast cancer.

I did get ahold of Dr Cook and have a CT scan booked for monday, of the chest abdomen and pelvis, with IV and oral contrast. He does one every 6 months looking for early recurrences.

This one is 2 weeks early, I thought that my visit in Portland would be more useful if this was done before my visit there. Also in a bit of a panic about the rising CA 125, so hoping the CT will provide some reassurance.

On the garden front, we have 70 tomato plants, and I can find 10 baby tomatoes. In Barbara Kingsolvers book (animal vegetable miracle) she had 50 and grew .3 of a ton of tomatoes.

I guess I have been dreaming of doing what she did for a few years and this is so exciting for me this year to see my dream come to fruition. Ken and I bought a set of about 30 antique canning bottles at an antique auction 15 year ago, and have just found out we can use these for canning and have found a store here that sells the rubber rings.

They have glass tops on them. Of course we will need MANY more, if all goes well. My neighbours think I am nuts, but I feel I have waited for at least 20 years to have a garden such as this.

Things just did not grow well in Bandon, and it was not for lack of trying. Even here, I am having trouble getting the pepper plants to survive outside the greenhouse, it is a cooler year than typical. But I really really am having fun with the garden. And there is ALWAYS something that needs doing in the garden. So far all we have been eating from the garden is the spinach and mesclun. I have one zuchinni that is little right now, and lots a lots of kale that may soon be ready to harvest.

Our garlic, which we planted last October, will soon be ready to harvest and I am replacing them with various winter squashes for the long lastedness of their fruits.

So good fun all and all. Last summer when I was sick, I dreamed of doing this and at times wondered if I would ever get a chance, so now I have the chance, I am doing it.

Love

Janet

jankenb @ gmail.com

Dolly Parton

2010-06-09T17:48:00.000-07:00

Hi Everyone

No this is not going to be a blog about my tomatoes..... well actually I DO have 6 teensy tomatoes now. I have noticed that looking at them several times a day does NOT make them grow any faster.

I had said I would post our video from the North west folk life festival we played at May 31 up in SEattle. We played on two stages, one called the ALKI stage and the other was a Dolly Parton Tribute stage.

We had our choice of Dolly Parton songs we could choose to play. The one I selected was called " the cowgirl and the dandy". The song is about a cowgirl in an airport on a night when all the planes had been grounded due to stormy weather. She meets up with a "dandy", "the grandest man that she had ever seen". The point of the song is that two very different people got together for a night of stormy weather. The song was written by Bobby Goldsboro and recorded by John Denver as well as Brenda Lee.

Ken and I met in an airport on a night when all the planes were grounded due to snowstorms, but that is about where the parallels end. I was NOT wearing rhinestone studded suit and Ken was not wearing a derby. However here is the video that Ken's sister Pat recorded for us.

Unfortunately, there was a sound issue and so you can not hear Ken and Mark's instruments as well as I would have liked, but this is how things often go at festivals.

I have my appt in Portland with Gastroenterologist on July 1st, and with the pain I have been having I have been thinking of going back to Dr Cooks plan.

He had said he wanted a ct of chest abdomen and pelvis approx every 6 months. (which would be early July)

I had thought I would hold off until I saw the gastroenterologist in case he suggested something different. I was also concerned about MORE radiation.

I guess now I am thinking that I should have the test before I see him. I guess something else has come up, in that my tumour markers have gone up.

The CA 125 went from 6 - 9 in the past 2 months, and they say that a 15% rise can indicate a recurrence and this is a 30 % rise. Of course I just got the results back yesterday and have been trying all week to get ahold of Cook.

To anyone who has had a ca 125, these numbers sound very low, but when you have had a radical hysterectomy, they tend to run extremely low, being there is no tissue left to produce it.

So today I have to say I am more scared than I have been in months. It is hard to say what this radiation enteritis does to the CA 125, but I know bowel cancer CAN raise it, so I wonder if bowel diseases can also raise it.......

Anyways will see what this week holds

bye for now

love

Janet

jankenb @ gmail.com

drug interactions

2010-06-04T10:31:00.000-07:00

Over the course of this blog, as one might expect given the numbers, other people have developed cancer. People who had been following my blog. So now I have had a chance to see it all from the other side. ...... wondering on some days when I have not heard, if something really bad has happened and just a constant thought about these people.

About 5 years ago a group called the ROP organized a march between Salem and Portland that many of us from Bandon participated in. It was a 7 day event and though some of the people came for only a day or two, there were probrably about 50 of us that did the entire trip. We camped along the way, and though there were many messages of peace we marched for, I think most of our group marched to bring an end to war. (in particular the one in Iraq)

The rather disturbing thing about that march is that to my knowledge now 3 women have come down with advanced gynecological cancers, Mariem died a year ago of ovarian cancer, I was diagnosed with the endometrial cancer a year and a bit ago, and the main organizer of the march, Marcy Westerling, was recently diagnosed with

Stage 4 Ovarian cancer. She too is quite healthy, She has just recently started chemotherapy.

Not sure about you, but that seems like a lot for such a small group, it is just coincindence, or did we march through a nuclear wasteland??

One person who has followed my blog closely and whom was the source of support for me, is now in the situation of caring for her husband who is going through chemo and radiation right now.

He started off doing extremely poorly, and the thought is always.....perhaps the cancer has spread further and is affecting other body parts. He was unable to eat, the food just seemed to get stuck at his stomach and go no further.

So I did a review of his medications. He had been on some meds before all this began and then of course he was put on several new meds, and when I ran a comparison on them, there were many that were apparently interacting, and he improved partially by just stopping one of the meds.

I got to wondering how often this happens. You take one group of doctors, those who really know the chemo drugs and ALL of the side effects really well, but not so much about all the other meds a person brings to the table when they start something like this.

In the work I have done for many years in geriatrics, they teach you to think , when a person comes in with a new complaint, just think drugs, drugs, drugs, and once you have ruled them out as a cause, then move on the other possiblilities based on symptoms.

This extends way beyond geriatrics though, really anyone who is on two drugs. For instance, if you are on an ace inhibitor (bp drugs that usually have a “pril” on the end of the word), and also take an NSAID (aspirin like drugs, usually called antiinflamatories), there is a much increased risk of this combo doing damage to your kidneys, and if you throw in a diuretic (water pill) the chances go even higher.

Other examples are the antidepressants, SSRIs, such as Paxil, Zoloft, Celexa, Lexapro etc etc. While these drugs are fairly safe if taken alone, if combined with other certain drugs, they can cause seratonin syndrome, which actually can be life threatening.

Some of the “other” drugs can be herbs. One of the main symptoms of seratonin syndrome is fever and shakes, without other signs of infection.

Here is a listing of meds that interact

http://en.wikipedia.org/wiki/Serotonin_syndrome

I had lunch yesterday with a few friends in Bandon and they sheepishly each had medical questions to ask me, I told them I was thrilled to have their questions, it made me still feel like a doctor. There is no greater feeling that to solve someone else’s problem.

I guess I was not clear on the “qualifications” part of my last blog.

Ken and I had pretty much the same medical training, exept that he graduated in 1980 and I graduated in 1990. In Canada at the time, most docs were GPs, general practitioners. Specialists did residency trainingm and GPs did rotating internships.

There came a time when they decided that GPs should also become specialists ...”family practitioner”.

They had a residency training and exams as well.

Ken was able to write the family practice exam because he was grandfathered in and even though he had not done a residency because he graduated in 1980 he could do that, and the US accepted his Family practice specialty on par.

To be licenced in Oregon, one only needs to be a GP, which is why we have been able to work all these years in Bandon.

Places like Eugene have policies against doctors who are not board certified, partly because it is a more desirable place to live....I guess and so they have no shortages.

I believe myself to be a very good doctor despite my lack of board certification, but there is really nothing I can do in Eugene. Ken and I do well when we work together, and so it is hard for me seeing him work and me not being able to.

In fact between the two of us, Ken would have gladly quit medicine years ago, it has always been me that still enjoyed it.

Because of my “qualifications” or lack of them, i was extremely fortunate to have been able to work as a hospitalist in Bandon, I loved the job more than any I have ever had. I will hold that time as a very special part of my “work life”. As one can easily imagine too being in a position like that the administration clearly has something “over you”. So I was in a very vulnerable position.

Society has been taught that board certification is essential, and I am sure that the administrator will be glad to advertize now that all the doctors at the hospital are board certified. (I am just like a dinasoar that has been caught between time)

Often in small communities doctors are called upon to take greater responsibilities, and I feel that Ken and I both did just that, and we did it well.

We also truly loved the staff at the hospital, we had the most awesome working relationship with the nurses. It was truly like a real team, complete with mutual respect.

I had to go back to sign some charts yesterday and stopped only briefly at nurses station, lest I break into tears.

I will continue to be the director of the coumadin clinic, (in Bandon) and I did hear that there was a lovely picture of me in the paper. (perhaps if anyone HAS the paper they could save me one)

Ken has a job filling in at the university, and is still going to be doing some ER shifts in Bandon. We are planning on getting Mushroom licences in the fall, and perhaps trying to make money at it (it is one “job” we can do together). We LOVE picking mushrooms, but can never eat them all when they are fresh. Some we cannot eat at all. So that should be fun, plus we get to take the dogs as well.

I am currently thinking of working a couple of days a month (geriatric days) at Gail McClaves office, OR seeing her patients at heritage place a few days a month.

I am starting to get quite nervous about my CT scans I will be having in early July, but I guess that is par for the course.

Bye for now

Love

Janet Bates

jankenb @ gmail.com

memorial day

2010-06-01T09:55:00.000-07:00

Ken and I are on our way out of Seattle, after a great Folk life festival.

We performed on two stages there yesterday and it went great.

I have a friend who has been watching the costs of the war, wondering if it will get to a trillion on Memorial day, and as a test, he monitored how far the costs would go while he played a recording of my song "american soldier", he then posted it on you tube http://www.youtube.com/watch?v=LNFC3yldUN8

While my song played, the cost of the war went up a million dollars.

So we played it at the festival yesterday, and hope to post the live performance to youtube soon.

It was quite fun, in that the second stage was a Dolly Parton tribute stage and several of the performers has been asked to cover a Dolly Parton song. We chose "the cowgirl and the dandy", a story of a cowgirl and a dandy coming together in an airport when the planes had all been grounded due to poor weather. The reason we chose this song is that Ken and I met in an airport during a storm that had grounded all the planes. He was NOT dressed in a Dandy suit and I was not dressed in a rhinestone studded suit with cowgirl high heel boots.

But we did get a great video of that show, so hope to get it posted here.

We met with our sisters at the casino at Tulalip. I made a hundred and twenty bucks and so bought two of the lovely house coats that they had in the room (rather than stealing them :) )

We are heading back to Eugene to start a life there. We intend to go to Bandon often to perform both at the Bulllards beach amphitheatre and at the brewed awakenings.

One of the problems with this move is that I will be unable to work as a doctor in Eugene due to my qualifications. Ken has the same training as me but was able to be grandfathered in to family practice certification (we were both trained as GPs, which was what most docs in Canada did that that time)

So I am in a position now in that my departure from Bandon will also be my departure from medicine...... unless we go back to Canada. If we go back to Canada my qualifications will be fine.

For my health, I am going to try a life without medicine, and focus on the garden and the music, and we will see how that goes. I do truly miss it though. Perhaps we can go back to Canada for the summers ????

Anyways a whole new life. We have such a wonderful group of friends in Bandon, who have been SOOOOO supportive to me through all of this cancer stuff, I really hope to maintain a relationship with Bandon, so as to keep up with these people.

Love

Janet Bates

jankenb @ gmail.com

The destination

2010-05-28T06:19:00.000-07:00

In the end, its not the medals you have upon your chest

But if somewhere underneath them, if you still have a heart left

If you can feel the pain of others, if you can even feel at all

When you glance at your reflection, is it standing straight and tall

The destination is a measure of the steps that you have taken from the beginning to the end

The destination is the sum of all your weaknesses subtracted from the sum of all your strengths.

We have left Bandon yesterday, Ken did my last shift as the hospitalist. We had given our notice for September, but last week in a private session with the hospital board, the administrator reported that one of the other doctors had committed a very serious HIPPA violation. This was completely not true, this other doctor was never given a chance to tell her side of the story.

She is also the doctor who has challenged the administration the most. So since we are the ones who challenge the administration the "second most" we decided we had to leave. We have spent 13 years being good doctors to the people of Bandon, and to think our reputation could be smattered by the twist of the tongue by someone who prefers not to be questioned, we just are not going to risk that.

Last night was a very tearful night thinking of all the wonderful people who work there. The relationship that Ken and I have had there has been the most wonderful.

I guess I feel in some ways as though I have run away from a task I had committed to as well. Taking on the chief of staff position last year, I fully intended to complete the full 2 years and I feel I have let down a lot of people who were encouraged by the progress we were making bring together the issues of the other parts of the hospital, with the medical staff.

From the last medical staff meeting, it was clear that there were factions there who did not want me there anymore and so I decided to give in to my weaknesses and quit. That, I did for my health.

Everything I read about cancers clearly show an association between high levels of stress and the emergence of cancer. Many people I correspond with admit that the year or two prior to their cancer, WAS the most stressful time of their lives.

The last 3 years have been very stressful. It is not the actual work, I love that, it is the "politics".

I have taken to listening to some of my songs recently, and yesterday whilst running was listening to the destination. Perhaps this was a time to give in to my weaknesses to preserve my health. I have plenty of strengths.

Today being a new day, we are heading north to Seattle, we are meeting Ken's sister, Pat, and my sister, Linda, at Tulalip, tonite. Do a little shopping and some gambling???

Then tomorrow we head to Seattle to the Folklife festival. Our little band is playing on two stages on Monday. The ALKI stage from 1-1:30 and on a stage that is doing a Dolly Parton tribute at about 1:40

I have been feeling really well the past few days. I saw Dr Cook last week, and he said that he likes to do a full CT chest, abdomen and pelvis every 6 months as surveillance, making certain there are no new recurrences. I asked if they could possibly do an MRI instead, just to avoid all that radiation, he said they really did not show the same level of detail as the CT.

Since I am seeing the GI guy up in Portland July 1st, I will wait to book the CT, to see if perhaps there is something more specific he suggests.

My bloodwork, the cancer marker is still low, which is good. My white blood count is also still low (as low as it was during chemo, or even lower at times). We talked about this, I told him, it seemed as though perhaps it would always be low. He said that might be so, and that there was likely no greater risk of infection. I wonder if this would be a concern with dental work??

Anyways lots of changes for us, there is clearly a sense of sadness leaving Bandon, and since we still have the house, we hope to have one more BIG PIZZA party there.

Love

Janet

jankenb @ gmail.com

a song came true

2010-05-22T09:18:00.001-07:00

Hi Everyone

So I wonder how often songs come true....... Well a song about a dream comes true?

I sort of feel like my song “Here on the farm” has finally come true.

Who would have thought that a song about being a farmer could come true, by leaving the country and moving to a city.

To anyone unfamiliar with my song “Here on the farm” I will include a link at the end of this so you can download it or just listen to it.

I have about 20 tomato plants planted in pots, in the garden and 8 of them hanging upside down in plastic milk jugs (and one bowel prep jug).

I have two oak barrels plum full of potatoes. I planted them in layers and waited for the shoots to come up and continued to bury them, now the first barrel has about 20 healthy appearing shoots, and the second barrel I am only half way up. (you can apparently grown 100 lbs of potatoes in each barrel).

I have taken tall paint barrels and cut circular holes in the sides and have stuffed each hole with strawberries.

We moved the wood frames from our raised beds over in bandon. I filled the first 6 inches up with weeds I had pulled. I then covered the weeds up with cardboard, and then we then brought in loads of compost soil from the local mass production composter company.

The reason I put the weeds on the bottom was to allow them to compost without the risk of them growing, hence the cardboard covers. PLUS this decreased the amount of soil we needed to purchase to fill the raised beds. I have about 30 red pepper plants in greenhouse still (too cold to put them out yet)

I recently read about cattle panels, which are 1/4 inch thick metal rods welded to make a fence panel (to keep in cows), sold in units 4 feet by 16 feet. They are used for “vertical gardening”. We have several of them, and I have zuchinni, cantelope, yellow squash and more tomatoes that we are going to grow up the panels.

I feel SO LUCKY I found 4 rooted asparagus plants yesterday, so am starting an asparagus patch. I have recently read that celery is hard to grow, and since it is something I can eat, and always loving a challenge, have started 50,celery plants that I am going to try to grow into the fall.

We have planted plum, nectarine, apple, and pear trees, as well as many more blueberry bushes.

We are working hard to improve the soil, but I am thinking that the native soil might not be so bad. I have never in my life seen more worms. Everywhere I did, I can usually see 5-10 worms with every shovel. I tend to dig more gingerly, trying not to slice a worm in two. I have never seen night crawlers before and the first few I saw at first sign I thought somewhat grotesque. THEY ARE HUGE! Knowing what important work they are doing in my garden makes it much easier to ...... embrace ? ..... if that is the right word. :)

Mark our neighbour has said that night crawlers fetch a pretty decent price amungst fishermen. I was thinking perhaps as a promo for my cds, I could give away a night crawler with the purchase of each and every cd. The ones that are mailed out would arrive, just worm castings, a cd and a worm, (or two).

Have I mentioned how much I love growing things?

The way I feel, it is hard to find organically grown food, and much more expensive, so the more I can grow myself the better. A friend recently told me about the “dirty dozen”, which foods were the most important to buy organically grown.

http://www.organic.org/articles/showarticle/article-214

I was at whole foods market yesterday and regular red peppers were 3.99 a lb and 7.99 for organically grown.

I will try to put in photos of my garden soon, too many rainy days to take pictures.

My vision has completely come back to normal, cannot see computer screen with out my 200 readers and I can see quite clearly in the distant.

This is the link the hear "Here on the farm:

http://janetbates.com/music.html

Just scroll down the page to the album "for all of his wealth" and open it and then down the the song "here on the farm"

I have set it up so it can be downloaded. Somehow it seems so relevant now to me.

A song came true. BTW these pics are not from my garden, I got them off the internet.

Love

Janet Bates

jankenb @ gmail.com

potatoes

2010-05-14T09:37:00.000-07:00

I guess I have spent the past week trying to come to terms with leaving this job. ...... and also trying to explain it, to me, and to others.

I have truly loved my work here, the nurses could not be better to work with anywhere. I have loved this job.

I do have many other wonderful things in my life and I guess I need to move on to them. I DO have to do it somewhere else though.

I have my wonderful garden, my music, my great husband and friends and family and my life. You just cannot have it all.

I am slowly coming to terms with the fact that the hyperbarics did not help me much. I hold to the possibility that the treatments may have prevented my problem from getting worse.

I was doing better during the treatments (than I am now) except that the rectal bleeding started then in a bigger way than in the past. Sometimes I wonder if perhaps I just needed to do it a bit longer, and unfortunately no one seems to know the answer to that. None of the doctors at the clinic seemed to know much about the whole thing, and my gastroenterologist knew nothing about it.

So I am hoping that the Gastroenterologist at OHSU might know a bit more about it.

Oh and I just found out this week that my insurance is going to pay for the hyperbarics, it has been rather stressful with regards that.

However I am slowing coming to terms with the possibility that there is no further improvement possible. Working on developing a whole new way to eat. I might have to go back to meat, not being able to eat legumes and being a vegetarian, I tend to be hungry all the time.

I am eating tons of spinach, which I am growing tons of in my garden, as I need the added iron to make up for the bleeding. So far my blood count with respect to that is doing OK.

I have planted tons of potatoes as well, though Ken and I have not been potato eaters in the past, we will become potato eaters with all the new changes. We are growing them in oak barrels and layering them.

I really need to post some pics of my garden when I get back to Eugene.

But this next picture is Ken and I with my sister Angie and her husband Kelly, at a James Taylor/Carol King concert we went to a week ago. INCREDIBLE night.

OTHER GREAT NEWS Josh got a GREAT report card for his first full university term AND he has a job...

bye for now LOVE

janet

time to go

2010-05-05T08:13:00.000-07:00

Hi everyone

Well what a wild ride the past few weeks have been. Last Tuesday we resigned our jobs at the hospital. We both love our jobs and the people we work with, but the politics just got to be too much. For years we have worried about the future of the hospital and challenged the direction of the administration, and we somehow just decided that there was nothing we could do and we would likely live longer if we just stopped trying.

You know the saying Grant me the serenity to accept the things I cannot change, the courage to accept those I can, and the wisdom to know the difference.

Serene is the only thing I have felt since we made this decision.

I am sleeping better than I have in years, laughing more, and somehow can see the future much more clearly.

We gave our notice as the First of September.

We still have 3 years until Ken can tap into his retirement, and have this very large mortgage (until we sell our house), but we are determined to make it work.

The univerisity (in Eugene) has already expressed and interest in both of use, and we can still do shifts and holiday relief back in Bandon.

Not quite sure how I will come up with the funds to do another cd, but perhaps with more free time I might work a little harder at selling all the ones we already have. :)

I am work work working on the garden as well. I have two books to help me with growing a sustainable garden in a small space. We are using whatever techniques we can to maximize space. Potatoes for instance, we are growing in Oak barrels and layering the seed potatoes with sand and compost, I have read where this can yield as much as a hundred pounds of potatoes. Strawberries I am growing in plastic buckets, and cutting circular holes in the sides and planting more strawberries in the sidewalls of the buckets. I have bamboo teepees for the cucumbers and beans.

I have already had 2 meals with the spinach I have already grown.

With regards to my health, well I guess my mental health has just had a great boost.

It is now a little over 3 weeks since my HBOT treatments finished. I feel that I am doing much better. I have much less abdominal pain, and much less nausea. I find in moderation I am able to eat many more things. I still have the bleeding, now pretty much on a daily basis. I think that part of the problem is that for the small bowel problem I have to take a low residue diet (which I can be more relaxed about now), but for the colon bleeding, I should be on a high fiber diet, which I just cannot do.

Anyways, since thus far neither my oncology surgeon, nor my oncology radiologist, nor my gastroenterologist seem to know much about any of this, I asked if I could be referred to OHSU, which is the main referral center in Oregon. The gastroenterologist said that if the bleeding gets to be too much he could do argon treatments, which means burning the area that is bleeding. From what I have read you can get permanent rectal ulcerations from that. I seem to have ended up with all the “rare” complications thus far, so am wanting to find a doctor who knows something about the effects of radiation on the bowels.

So I have an appointment for July 1st. up at OHSU in Portland.

The hairdresser I have had for years, is very hard to get into, and I have had my hair “woven” with colour every 6-8 months. I usually schedule a year in advance. Well needless to say I kind of got off of the list. I am quite excited because today I am back on the list and getting my hair done today. Ken thinks it is getting scruffy and I need a cut too :) I am savouring every centimeter though.........

Other news Josh got straigh B’s on his 3rd term of university and actually also did a full course load, AND he is looking for a job today. Yea! !!

Upcoming festivals ........ Folk life in Seattle at 1pm May 31st

Oregon country Fair July 10th and July 11th times and stages TBA Eugene

Bye for now LUV

Janet Bates

jankenb @ gmail.com

a day on the beach

2010-04-28T07:39:00.000-07:00

I guess I have been waiting for something really positive to write about because I feel I just complain all the time.

After the colonoscopy I developed severe heartburn that nothing seemed to help.

I have been taking prilosec twice a day (double dose) and zantac once a day and tons of tums.

I have even gone so far as to quit coffee a week ago. Then last Thursday I developed laryngitis. Originally I think it was related to the heartburn. At night when you lay down, if the bottom muscle of your esophagus is not strong it allows the acidy stomach contents up to your vocal chords and even into your lungs.

So I had laryngitis for our concert for earth day. It was interesting, I had to develop different strategies to sing. It went pretty well though. We got it all on film and Ken is working on preparing part of it to post here.

I now have full blown bronchitis, and am pretty much feeling sorry for myself. The heartburn and stomach pains are better though.

We have another concert this Friday night in Bandon, at Brewed Awakenings, so I am trying not to talk at all to get my voice back for that.

I do think that the hyperbaric oxygen helped my problems, it is just hard because I have had OTHER problems ever since I finished.

The other very sad news is that Brandy Hindman the 28 year old women whom I spoke about last fall in this blog,( with the breast cancer) died rather suddenly last week. Wife and mother of two very small children.

We REALLY DO have to find out what is going on in our world that this should happen.

I read the other day that almost 1 million people have died from the fall out from Chernobyl, and that the Pacific Northwest was also contaminated.

What is wrong with us that we would even consider messing around with that stuff, when we have so much solar potential out there?

Bye for now

Love

Janet Bates

jankenb @ gmail.com

too much info

2010-04-14T14:05:00.000-07:00

Perhaps at stages that is what this blog should have been called.

Just finished the colonoscopy and then had lunch, and then had a latte....and then felt just a big groggy and nauseated, so thought perhaps it best to sit and write until all the drugs wear off.

So this is my photo album of my morning spent in the colonoscopy suite. The three red shots are all of the rectum and it should have the appearance of all the other pics.

He said that these are the changes found in the rectum with radiation proctitis. He said that the area was very friable (bleeds easily) and so is pretty likely the cause of my bleeding.

At this stage he said we will only treat this if my bleeding gets to the situation that I am in need of blood transfusions.

Unfortunately a colonoscopy only shows the large bowel, and the small bowel is where I think most of the symptoms are, but at least now I know what is causing the bleeding and that it is not cancer.

So I will write more when my head clears a bit

love

Janet

jankenb @ gmail.com

great things about having a colonoscopy

2010-04-13T18:18:00.000-07:00

I am sure that everyone reading this knows all the great things about colonoscopies, if you have not experienced it first hand, by having had one yourself, I am sure you have had the pleasure of a family member whom you have had to listen to as they whined about it.

No one is untouched by the test.

I just wanted to share a really great thing about colonoscopies that I am sure NO ONE has ever told you.

I have just found out that the gallon jug that contains the stuff you have to drink to clean you out the day before, makes a lovely tomato plant holder.

I will include picture. The jug is large..... (as in " I cannot believe I drank the whole thing" large), it is square and the bottom cuts out quite nicely to allow one to fill it up with dirt.

Not sure if everyone is familiar with the upside down way to grow tomatoes, but it a great new technology for growing. In fact you can grow MANY things this way, cucumber, zucchinis, strawberries, in fact some people with small yards can double their grow area by putting up two posts and running a 2x4 across the top of it and hanging all kinds of veggies.

I tried this a few years ago, and used those cloth bags that they always give you at conferences, but,........the cloth rotted. So this year whilst waiting each day for my hyperbarics, the man who accompanied his wife to treatments adjacent to mine, was quite a wealth of knowledge on the "small garden front". Milk jugs .....he said, well little did he know that even better than a milk jug is the colonoscopy prep bottles, and all you gotta do to get these little babies is to ..

yes...... have a colonoscopy.

yes tomorrow is the day.....

and I am STARVING!!!!!!!

I am looking at every little thing in my cupboard wondering if they may go unnoticed by the scope..... A few little crackers, is HE GOING TO NOTICE A FEW LITTLE CRACKERS.

That does remind me several years ago the surgeon telling me that he KNEW one of his patients had NOT followed the prep for the colonoscopy, he saw a hot dog weiner........ and took a picture of it to prove it.

So I guess somethings cannot be hidden.

So for now I guess I will just have yellow jello with honey on it. I was thinking about chocolate, and how it melts in your mouth and ..... how would that be different from say.... coffee, which is allowed.

by the way, my tomatoes are still alive.........(the most recent batch I planted, that is)

I decided to try something new to warm the ground. We have all these left over tiles from various projects, so I have covered the ground around the tomatoes with tiles, to soak up the sun in the day and warm up those little tomato roots at night. Perhaps this is my newest invention.

By for now

Love

Janet

jankenb @ gmail.com

oops I did it again

2010-04-11T07:47:00.000-07:00

Just wanted to say, that all the bleeding seems to have stopped, I seem to be doing great this week.

I am still booked for colonoscopy on wednesday though, guess I should ......

I am continuing to work towards the marathon, I guess there is this idea in me that if I can run a marathon, then I MUST be healthy.

I feel stronger each week, yesterday I ran 11 miles, and it was not that hard. The only hard part was my right foot which goes numb the further I go, and then gradually starts burning. The last mile and a half we very painful

The burning stopped as soon as I stopped. I think this is the peripheral neuropathy from the chemo, my big toe is always numb.

I am thinking this may hinder the higher distances, so am "researching" what I can do. I am wearing the whole leg garment on my right leg for the lymph edema, and I wonder if perhaps that is part of the problem, so next time I am going to take off the compression garment for the last few miles.

I am still looking at the extremely long row of peas that are up in my garden, wondering if I will be able to eat them (for some reason this is one of the hardest parts for me) I absolutely love peas and I grow them so that Ken and I can go every day and eat them in the garden.

During my long run yesterday I thought many times how lucky I really am, and to come to terms with dietary modifications. After all, what would it be like to be diabetic?

Our little band, Ken, Mark and me have been together now for ?? 5 years. We have really developed a great sound, and work very well together. We have also been through a lot. Mark and I have both been through a life threatening situation in the past several years, his more of a cardiac situation and of course mine a cancer. We have both had losses.

A few days ago I was telling Mark about hearing a song on my run that day, and that we should practice that song. He said how he used to love the way the mind works when you are running, and how much he missed running. He has recently started cycling and hopes to do more of that.

Both of our "situations" became apparent rather suddenly and both soon after a performance.

His situation was that we had performed at Cosmic Pizza sunday night and a few days later he was in ICU, mine was that we had performed at Agate street grill and with in a couple of weeks I was having radical surgery. It took him months to get back to just walking and now he has long walks every day. Me, well........here I am.

I think I can speak for him here, but I do think that the music was there for both of us when it seemed that so much else was gone. I was going to trash the cd as I did not have the energy to finish it when I was on chemo, but then I decided it was at least something positive to be doing when everything else was negative.

Now I feel badly whining about my dietary restrictions, when at least I can run, and we all have the music.

Anyways, some times I wonder if I explain things very well, you have a feeling and when you try to put it in words it just gets lost.

I am feeling great today.

My only whoops is that I transplanted my tomatoes in the garden AGAIN, only to find out that Eugene's average last frost is April 23 ......

It IS a good thing that I have a few hundred tomato plants started, I may need them all.

bye for now

I just HAD to share this picture

Love Janet

jankenb @ Gmail.com

Love Janet

jankenb @ Gmail.com

almost done

2010-04-09T07:40:00.001-07:00

Hi everyone

Some times I feel like this blog is like the song that never ends....it just goes on and on and on.

I am so sick of doctors and hospitals and treatments etc. I just want my life back in a normal way.

I am due for my 39th treatment today and my last one on Monday.

I had been doing very well and it all seemed to fall apart in a handbasket (how DOES that saying go?)

I developed frank bleeding this past week, (with my bms). I have never had this much before and it had actually gone away about half way through my HBOT treatments. Starting last weekend I have been passing bright blood and dark blood and clots. It is a bit frightening, as a doctor, I always send everyone with any amount of bleeding to someone who can do a colonoscopy. In Bandon our surgeon does them, but in the bigger centers, gastroenterologists do them.

When I saw the gastroenterologist in January, my bleeding was extremely minimal and since I had had a colonoscopy a year earlier, he thought it was not necessary. He did say he wanted to know if I developed any further bleeding. That happened in February, it was more obvious, so I decided at that point that HBOT was the best way to treat the problem, and that colonoscopy in the situation of radiation enteritis, was higher risk of perforation. (in other words, I did not contact the gastroenterologist)

On Monday I was passing clots even when I passed gas, so I decided I should see the gastroenterologist again.

I mentioned it to the HBOT doctor, and he said it clearly could be related to the HBOT. He said that the whole point of HBOT was the angiogenesis, or formation of new blood vessels in areas where the blood supply has been damaged by the radiation. When new vessels form, sometimes they form in ways that might bleed more, or this could all be part of the healing process. He also thought it would be a good idea to see the gastroenterologist.

So that is what I did yesterday.

It was a good visit, he was quite interested in the HBOT, and what it was like etc etc.

Perhaps I have entered an elite...... someone who has been treated with HBOT :)

So I am booked for colonoscopy for next Wednesday

The doctor has said he will not do any biopsies unless he feels something looks a lot like a cancer, because any sort of opening the bowel has a very hard time healing. Could just cause more bleeding. When they do colonoscopy they often do "routine biopsies", he said he will not biopsy anything unless it is absolutely necessary. BTW I am not worried about cancer.....

Normally when they find the area of bleeding in this kind of colonoscopy they treat it with ???? cobalt blue...(or something like that, I did not quite get what he said there) but we agreed that he will not treat any areas of bleeding because I am not anemic from the bleeding, and once again he could cause an open area that will not heal.

Should the bleeding become worse, we will deal with that in the future.

I have to say I am a bit worried about the prep, it is hard enough with normal bowels, right now I get nauseated if I drink too much water at one time, and I have to drink a gallon.

I am going to stay in Eugene for that reason

He also shed some light on better understanding my small bowel symptoms, ie, nausea after I eat and being unable to eat any fiber.

He said that when the small bowel is affected (ie the blood supply damaged), what happens is that that portion of the small bowel does not obstruct like you think, he said what happens is that it just stops peristalsis. So anything going through, does not go through this area as well because there is no muscle contractions to help it through. So from that I better understood what was going on in small bowel.

I am off for treatment number 39 today. Monday I get to "ring the bell".............

9 miles down

2010-03-26T07:45:00.000-07:00

Hi there

Well number 29 today and the "novelty" has definitely worn off. I am sticking to real action movies to get me through the last 10 treatments. I feel very motivated because I am definitely feeling much better. I completed a 9 mile run the other day with 2 conditions playing against me.

It was hot (which I am not used to) and I was wearing Ken's shoes (which are at least one size bigger than mine). But I made it. (I forgot mine back in Bandon)

No bathroom stops, no problems at all with the bowels. No more mucus, no more bleeding and very little pain, and no nausea recently. Ready to make black bean soup...... Ken says perhaps we should wait till NEXT week..

I am feeling pretty darned normal, except for the eyes and I am even getting used to that.

I have decided that I really would like to plan to run a marathon this year. Though I have never gone back and read this entire blog again, I am pretty sure I mentioned early on that I was going to run a marathon in a year, and everyone thought I was nuts, and I probably was.

I remember trying to run while I was on radiation, and being thrilled at getting 2 miles. I have come so far ( well ...... 7 miles).

A marathon is 26.4 miles (or 27.3), and it is exactly the distance from our house on the beach, to Fred Myers in Coos Bay. I used to run that distance a couple of times a year. I did run 3 formal marathons in the past, the first one in Seattle in 1996. The way I see it, that would be a good one to plan for, both timing, and sentiment wise.

It is in November, US Thanksgiving weekend, and this year would be 15 years.

It holds another significance for me as well. The night before the marathon, Ken and I got a call that his beloved Aunt Genie had had surgery that day for an abdominal mass, and it turned out that she was just full of cancer, so they just closed her back up, nothing done. I guess most people run a marathon thinking of the great accomplishment they are making, however that day all I could think was how very lucky I was to be able to run, when poor Genie had cancer and was going to die of it. Many tears along the way. Genie was one of the most wonderful people I have ever known.

So I think perhaps that that should be the one I should aim for.

Basically the way you "train" for a marathon is to have one long run and two short runs a week, the long run increasing by a mile every week, until you reach about 15 miles and then you have a long run every second week, and a 8-9 miler on the in between weeks.

I may try to do it even slower than this, having the long run every 10 days to allow for more healing time. The one other thing that has cropped up is the numbness from the chemo. I had numbness in my feet and hands that started towards the end of chemo, but most of it went away except from my right big toe, which is numb all the time now. However when I run the other toes become numb as well and gradually the bottom of the foot also starts to go numb. The numbness in the big toe turns to pain ( which I believe must be the peripheral neuropathy pain which is described as being a burning type of pain). This all goes away when I finish running, except the numb toe. It is kind of funny in that in diabetics we are alway teaching them to examine their feet regularly especially if they have numbness, as they would not detect an injury. Well I did not think to check my toe until today and was quite surprised to find a big blister on my toe, which I had no idea was there. So I WILL need to be more careful and check my toe on occasion.

I thought I would include this video, it was filmed on an IPhone....pretty incredible EH?

Bye for now,

love

janet

jankenb @ gmail.com

vaginal atrophy post radiation

2010-03-24T07:07:00.000-07:00

Hi Everyone

Just a quick note to tell you about my visit yesterday. My gynecologist/oncologist examined me and said that the bleeding from the vagina is most likely caused from atrophic tissues. Atrophy is just a wasting away of tissues, from many causes. In this case, the vaginal tissues, which have been treated heavily with radiation have lost much of their normal properties. Much like a bad burn....

If you have ever seen someone after a severe burn to part of their body, such as the face..

The skin lacks elasticity and is very prone to injury, and bleeding. She said that during her exam, doing the PAP, the tissues bled, just on touch.

ANd she said that all of this is normal and that she saw nothing suspicious for cancer. She did do a PAP which is to look microscopically at the cells. She does not expect to find anything on that either. I have read where less that 1% of endometrial cancer recurrences are picked up on PAPs. They do them, but they are little help.

The most important thing is for an experienced doctor, trained to know what to look for, to do the exam. I think more is obtained by her exam than by the pap.

So anyways, things look good. My Ca 125 is still 7 which it has been now for months (can't remember if I already said that)

I am certain that it is going to get VERY cold in Eugene soon, it may even snow..... I started planting my tomato plants in the garden yesterday :) We are gradually taking out more and more ground cover to make room for vegetables. Yesterday we put in a raised bed that I am going to put in all my basil plants, I am going to put them very close together and fertilize regularly.

I saw the most incredible movie in the chamber yesterday, the Changeling with Angelina Jolie. Wow what an incredible movie, and a true story, thanks to Bob for suggesting that one.

Bye for now, today going in for treatment number 27, I did not really start counting until the last few days.

Love

Janet

jankenb @ gmail.com

out in the streets

2010-03-22T14:23:00.000-07:00

Hello everyone

Heading back to Eugene after a weekend in Bandon. Feeling very great, things really seem to be settling this week (I say with crossed fingers). With so many things in life there is this underlying “superstition” that you are afraid to announce something is really gone, for fear that by announcing it, ie being too confident, that it will all come back.

For that reason, I am very afraid to say that I feel that I am cured or anything like that, especially about the cancer. You are always reading about those famous ones, who had said that they were cured, only to be reading their obituary a few years later on. I guess the better term is NED, or no evidence of disease. That way you are not “messing with” the gods of fate, you are only stating a fact.

Perhaps it is something like “mission accomplished”........or that its not over till the fat lady sings, and I just do not know who the fat lady is.

But everything seems to be better and I will not bore you with the gory details.

I am seeing my gyne/oncologist tomorrow about the vaginal bleeding, I guess just so she can have a look and make sure no evidence of some growth in the vagina, my guess is that she will likely do a PAP of the vagina. A PAP is really just a swab, usually of the cervix to screen for cancer cells, or “precancerous” cells. So it can be done after a hysterectomy but it is more of a vaginal wall smear, or the cuff, which is where the top of the vagina is sewn up where the cervix USED to be.

I had my CA 125 done ( I have them almost monthly and the insurance I think only covers them every 3 months, but they make me feel better. My CA 125 is still 7, which is where is has been since the end of radiation. And that is a very good and very low level. So I pay for a few here and there..

It was great this weekend to be out “in the streets” again for a protest of the war to commemorate 7 years of this Iraq war.....is commemorate the wrong word here, perhaps remem-berate. This kind of thing is important I believe, to remind people that there IS a war going on and soldiers and civilians are STILL dying.

Over the past year I have come across so many people with cancer. What a terrible fate to die early of cancer. I got to thinking that actually war is even more senseless. Historically more than 50% of those who die in war are the young, the children. -Otherwise healthy children suffering violent deaths, for what?? Now what could be more senseless than that?

I feel pretty darn lucky to have lived to the ripe age of 53 and never experienced war, first hand. In comparison cancer seems trivial, for many there is a cure.

To utilize metaphors to explain things, which I often do in my songs, I would wonder if there really is a cure for war. This country seems to have a rather metastatic case of war-itis.

Now there is a metaphor with a lot of possibilities.....

Anyways, I digress. I have included photos taken by Bob Fischer of us out there last Saturday. As you can see my hair is VERY thick, but not yet worthy of a pony tail (not that I have not tried)

Love

Janet

jankenb @ gmail.com

maybe this is working

2010-03-19T06:04:00.001-07:00

Hi there

Wanted to check in today to say that I really think that perhaps this week is really making a difference. I felt great all day yesterday and feel great today. Pain is nonexistant now.(always afraid to say that ...you know with superstition and all)

The headaches seem to have gradually gone away with the more I wear the glasses.

Ken and Mark and I are practice practice practicing for an upcoming show here in Eugene for Earth day, April 24th, down behind the EWEB building. We are playing for a grand 75 minutes, and these shows are always great because I feel at liberty to play all political songs.

Also for the show in Seattle (folklife festival) I have been asked in addition to my stage spot to perform on another stage that they are doing a Dolly Parton thing, having everyone do a Dolly Parton cover. So have I have searched to find one that I have not heard in years, called the cowgirl and the dandy. On a rainy night in tennessee in an airport, when all the planes have been grounded she meets a "dandy". I have always loved the song, so I will do that one.

BTW, Ken and I met in an airport, on a stormy night, when all the planes had been grounded.

I once read somewhere that to form a bad habit it only takes a day or two, but to form a good habit, it takes 6 weeks. So for 6 weeks you have to PUSH yourself to do it, and then it becomes a habit. Right now I am working on my doing some form of exercise every day,........ as my habit.

After my treatment today I am catching a ride home to Bandon with a friend, and I am really looking forward to seeing Ken.

We start a 3 week holiday next week, so we will be here together.

AND TOMORROW is a big rally at the corner of 101 and hwy 42 in Bandon to protest the Iraq war, on the 7th anniversary. Come one come all, and there are protests going on all over the country.

Its bad enough the loss of life from cancer, but that is no wheres near as senseless as the loss of life from war.

Love

Janet

Jankenb @ gmail.com

8 loooong miles

2010-03-17T17:40:00.000-07:00

Hi there

I am half way through the hyperbaric treatments and I feel it is helping.

It is a hard thing to measure, but I seem to have less pain. Still some bleeding, diarrhea etc etc

I have worked my way through most recent Meryl Streep movies, pretty amazing woman.

I read where she was being nominated for Julie and Julia, which is her ?14th nomination, which is a record. She certainly deserves it.

I am still working away at getting back to the shape I was in before this all happened, and that little photo above there was snapped at the end of an 8 mile run, which came after an 8 mile bike ride. The reason it is so fuzzy is that I was going SOOOO fast..:)

There certainly are more challenges with long distance running than there used to be.....

lack of bathrooms being one. I guess rather than bemoan all I have lost in fitness, I am trying to think of how very lucky I was before that running came so easy to me.

I have probably mentioned this before, but for many years, Ken and I did a 21 mile loop every Friday, Ken on his bike, and me running. To look back on my life and choose the very very best times, I would have to say that these Fridays have been the very best of days.

So I guess I would like to get them back. So I will keep working at it. You see it used to be easy for me to run that 21 miles, and to run 8 is very hard.... but I WILL quit complaining.

My eyesight is QUITE interesting. I have completely switched from being for sighted to being nearsighted. I went to get glasses this week, because I was concerned driving and having headaches and wanted to see if the vision was causing them. I normally need 2.50 readers to read a book, or the computer, now I do not need anything.

However I cannot read any of the numbers on the stove which is 8 feet away. SO I am basically reading UNDER my glasses, instead of what I normally do, which is looking over my glasses to see the distance. It is hard to remember what to do when. So subsequently the headaches are back and forth.

I have developed some vaginal bleeding which can be a sign of recurrence (but also can be several other things), so am seeing my oncologist next week.

My friend who had surgery last week has gone home and sounds like she is doing well, I have not heard yet about what was found, but I am sure in time.

Bye for now

Love

Janet

jankenb @ gmail.com

the sink project

2010-03-13T07:55:00.001-08:00

Well its been quite a week. My vision has really decreased, I can still see all the cars around me, the signs are getting to be a problem, and this next week will be the last week I have to drive myself. After this week, Ken will be here for 3 weeks.

I may go and have a cheapo pair of glasses made, just for the driving. They advise you not to get your eyes checked until 8 weeks after you finish, but this is just so you do not spend unnecessarily on glasses you will not need. I figure if I can maintain my independence, it will be worth the cost, and a friend told me that they are pretty cheap at this one chain. (not walmart)

My symptoms all came back this week and I had to take pain meds during the night and the antinausea meds, but am better today.

I met with the doctor yesterday. They are there every day, but thus far I have only seen them in passing and they occasionally wave at me in the chamber. One of the doctors was leaning on the chamber trying to ask me in sign language how I was doing. I was TRYING to point to the sign on the outside of the chamber that said "do not lean on the chamber"...........

..Doctors just never follow the rules...

The reason I saw the doc yesterday is that I had asked Scott, the tech, if it was normal to have a funny feeling in my chest for the first half an hour after every treatment. To doctor explained that there are certain changes in the lungs that occur with the hyperbaric treatments. I have read into this and my simplification would be that the lungs have some microscopic inflammation from the high levels of oxygen and this clears after treatments. Studies done on the pulmonary function tests of those treated with hyperbaric treatments showed a decrease in their FEV1 (which is the volume of air you can breath out forcefully in one second) which is progressive as your treatments to on. The studies went on to show that this is all reversible after the treatments ended, approx 8 weeks after (according to the studies)

So what this means to me is that perhaps being just a little more short of breath when I am running is to be expected, and will get better afterwards.

Anyways while I was seeing the doc, I asked him about what to expect at this stage as far as my radiation enteritis, since many of my symptoms seem to have come back last weekend and for the first few days of this week. He said with the radiation changes they did not really look for improvements until the end of the first month (20 treatments)

Well I am at 19 and actually doing pretty well today. So perhaps I was just expecting too much too soon.

I also asked him about the occasional reference I see questioning whether HBOT can stimulate cancers to grow. He said that this gets brought up every year at the HBOT conferences and thus far there has been no study that had proven that.

So onwards and upwards.....

This has been a colder week in Eugene, and though I have over 400 plants growing in my greenhouse, we have turned our energies inwards, and indoors for this week.

We purchased a little cabinet at pier one imports, replaced the top of it with hardybacker and then tiled it, replaced the sink and faucet and finally applied the tiles to the backsplash.

Well actually Ken has done pretty much all of this, I am just the one who dreams it all up.

If you look off above the shower in the background you can see my handywork.

I decided yesterday that the top row of tiles in the shower did NOT MATCH my colour scheme for the sink. I guess I had expected that perhaps the tiles would just come off sort of like the white icing comes off gingerbread houses. ,........ NOT!!!

Whilst tearing them out yesterday I was wondering why it reminded of the many times we have torn apart walls in our renos....... the reason being I WAS tearing out the wall, WHOOPS>>>

Ken rushed out to get a better tool before I completely destroyed the walls in the bathroom, I feverishly worked at it to show Ken I could get it done before he got back with his TOOL.

Well I got it half done and the job was easier with "the tool", why DOES he always have to be right ???

Anyways with our extensive experience with home renovations, we are more than able to fix a few little holes in the walls.

So when Ken goes back to Bandon on Monday I will complete the tile work in the shower, I was feeling so left out with the sink project.

THAT IS unless the weather gets better and I turn my attention outside again. :)

Oh and guess what OTHER good news happened this week, I have been chosen to perform at FOlk life a festival in Seattle at the end of MAY.

I have to also chose a Dolly Parton song to perform on a second stage....hmmmmmm

bye for now

luv

Janet

jankenb @gmail.com

a prayer for a friend

2010-03-10T08:47:00.000-08:00

Over the past year, I have befriended several people with similar cancers of the endometrium.

The person I have gotten to know the best is Paige Donnelly, she contacted me via this blog and asked if we could interact through email. We have stayed in close touch throughout this time.

She had endometrial cancer which was found accidently after a hysterectomy for fibroids.

The pathology report showed a cancer in the uterus, and extremely rare one, and an extremely aggressive one. On Pet scan she was found to have a positive node in the pelvis, one in the para aortic area and another one somewheres near the liver. Since the "histology", or type of cancer is rare

She has been on chemo for a year, all of the other positive lymph nodes have disappeared except for the one near the liver. The doctors have been very hesitant to operate on this node, since the surgery itself is so "difficult" to get at. Since the other nodes have all now disappeared, they feel that there may be a benefit in operating on the remaining nodes, which is clearly abnormal, but has been stable in size for several months.

She has been to 4 OTHER centers looking for other opinions, and unfortunately with the best and the finest, her prognosis was still very poor.

I am in total admiration for her in her determination.

If anyone out there has a moment please send a positive thought, or prayer her way today, for she is having a very big operation today and she is a very special person

Love

Janet Bates

jankenb @ gmail.com

starting week 4

2010-03-08T17:38:00.000-08:00

I have now completed 15/40 treatments. I have been doing pretty well, this past weekend though, I guess I must have ate the wrong thing and have been nauseated since Sunday morning. I have been taking the zofran, which partially works.

The odd thing is that it all went away while I was in the chamber, but came back a few hours after I finished. ??? Anyways much better today.

This radiation enteritis seems to come in "waves". I seem to tolerate a regular diet for a few days and then it seems to become more than I can tolerate and I have the nausea and pain, which seems to last for a few days after I stop eating any fiber. The good thing about the no fiber diet is that pizza is included, the bad thing about a no fiber diet is that pizza is included.

I should say that apart from the past few days I have been doing very well. I have been working hard at getting back at my long distant running legs back and really feel ready. I am up to 7 miles and my legs are not extremely painful for several days after each run (which has been the case now for months).

I think it is a little too early to expect results from the hyperbaric treatments, as studies have suggested a minimum of 30 treatments and suggested 40. It seems for other conditions the number is less. To form a new blood supply to the portions of the bowel that have had the blood supply damaged, I guess takes time. I guess in many ways it is much like the patients with chronic wounds.

It is hard to have a problem that nobody really understands, I do not fault anyone for not understanding it, I really believe that my oncology doctors do not fully understand this disorder. My vision has gotten quite poor over the past few days, and I was telling a friend about it and she said.... "and you are doing this, why????

Cancer is easy to understand, everyone has been touched in some way by cancer at sometime and know what a relentless disease it can be. Most of the symptoms I am having everyone has had one time or another with the flu etc, so it must be hard to imagine why someone would go through 8 weeks of treatment for this. But like everything else I have read a multitude of journal articles, and this is clearly not something I want to have the rest of my life, and the progression of scares me to death, especially if there exists a treatment, so for now I feel that as long as Ken and I understand it, that is all the matters.

I got fed up with white hair, so I have tried a colour, it is just a temporary colour until I can get into my hairdresser, but being in Eugene on weekdays makes it hard.

I am quickly remembering why I have had long hair all my life, I usually never have to do anything more that just comb my hair, and of course with chemo, I had nothing to do.

Now it seems that something is needed, my hair is just a big mass of hair with no shape, so I have purchased a curling iron (years since I have used one)

I think that this is just going to be a phase that I have to grow my way out of. I was thinking the other day about the old bumper sticker. "if you are going to say no, do it now before I spend all my money on you"

I have been thinking the same thing, ..... if I am to get a recurrence and need chemo, I would rather it sooner, before my hair has all grown back...

I guess I am just at the stage of being interested in my appearance sometimes, for the first time in over a year.

I do feel fortunate to have hair and it clearly is much thicker than it was before and it was thick before.

I am extremely excited about my "nursery". I have about 300 little plants growing in my green house. Why so many? Because that is how many came in the pouches.

I read Barbara Kingsolver's book a few years ago "animal,vegetable, miracle" how she and her family managed to live a full year on what they had grown, or bought at the farmers market.

Upon reading this, I resolved that I would like to do this, or something like this. Last year plans just fell apart, and I grew very little.

So that makes this year even more exciting, and to have a garden over here in Eugene where it is much warmer in the summer than Bandon. So I plan to grow tons of tomatoes and peppers and basil ...and beets and I am even going to grow cantelope, (which I also have growing in the greenhouse now)

I guess in many ways this is part of what makes this radiation enteritis hard to accept, it would be EXTREMELY hard to live off the land if you were unable to eat any fiber, and living off the land is one of my dreams. The main source of protein would be beans, peas and lentils, 3 things I definately cannot eat right now. So many of the anti cancer foods that I have been developing into my diet over the past year, I cannot eat now. I do feel that much of what set me back this past weekend was asparagus, which was one of the main anticancer foods.

ANYWAYS, I will stop lamenting here.

It was brought to my attention that yesterday was the one year anniversary of this blog, so happy anniversary

Love Janet

jankenb @ gmail.com

myopia and presbyopia

2010-03-04T06:13:00.000-08:00

Well a wonderful celebration last week, Ken figures we should celebrate every 3 months..... figures.

We had a wonderful scallop dish for dinner with "the prisoner" wine. VERY SPECIAL, our favourite. Kind of ironic, a year ago, 2 nights before my surgery, our friends here, Mark and Linda had a party for me, I guess I preop party. Ken and I in our getting ready to come over to Eugene, forgot our bottle of "the prisoner" that we had planned on drinking at the party. So to make up for it, we stopped the whole food market and bought several bottles of wine, that had birds on the label. It was an interesting way to select wine, but actually they were pretty darn good. We had another wine that night that was called "3 legged dog", which of course also had a 3 legged dog on the label.

I had my 12th hyperbaric treatment yesterday and so far so good, they are going well. I have found that when I wear my reading glasses to read on my computer that everything is fuzzy, and when I take them off everything is fine. From what I gather my "presbyopia" (age related farsightedness) has improved.

During normal vision, light passes through the cornea, the clear covering of the eye, and then through the pupil, which is actually a hole in the colored part of the eye, or the iris. Light then passes through the lens, which focuses the image on the retina at the back of the eye. At this point the image is converted into electrical signals that are sent to the brain.

A person who is nearsighted (myopia) sees nearby objects clearly, but due to the shape of the lens, the images of distant objects are focused in front of the retina, making the images blurred.

A farsighted person (hyperopia), sees far away objects clearly and nearby objects appear blurry because the lens focuses the images at a point behind the retina.

http://video.about.com/vision/Near-Far-Sightedness.htm

So with myopia, usually the problem is related to the lens, and with presbyopia the problem is related to the shape of the eye, as you age and lose elasticity of the tissues the eye becomes more oval shaped as opposed to round, so the lens focuses behind where it should.

So if I am becoming more "myopic" that means the effect of the treatments are causing refractory changes in the lens so as to move the focus forward, and closer to where it should be.

So it seems that for a time, I might just have NORMAL vision.

Well at least normal "near" vision. I think my distant vision is deteriorating, Ken can see distant signs better than me, and usually it is the other way around.

Other things, I have not had nausea in a week, I still have the burning lower abdominal pain, but it is quite tolerable and I only take something when it keeps me awake at night.

I have had no bleeding for a week now, either.

Chewy and I are doing well over here, I try to take him for a walk every day around the block, he is not used to walking on a leash, and I am not used to picking up his poop. He looks at me SOOO WEIRD when I do. There is a house near the end of this road with a HUGE dog that sits in the window all the time. When Chewy goes by the dog gets VERY excited and starts heaving himself at the window, as you can imagine Chewy rescinds by heaving himself back at that dog, at the end of the leash, which is not doing my shoulders ANY good. So I try to make a very wide berth around that house. I keep wondering how long the window will last.

I have never seen so many movies. Last week was Meryl Streep week, saw Julie and Julia, then The devil wears Prada, then Rendition. To watch one actress play those three parts was amazing, she is so versatile.

This week it is Brad Pitt, saw "the curious case of Benjamen Button", and then "Glorious Basterds", again quite a change in acting. I found for being in the chamber, Benjamen buttons really dragged on, but Glorious Basterds, it seemed the treatment went very fast.

Today it is back to Meryl Streep and "Lions for lambs" thought I would like to see her in a "positive" role, a good guy.

Looking forward to seeing Ken tomorrow and a few days in Bandon

Bye for now

love

Janet Bates

jankenb @ gmail.com

My first anniversary

2010-02-25T07:21:00.000-08:00

It was one year ago today that I had my radical hysterectomy for endometrial cancer.

The pathology a week later showed it was Stage 3C with positive intraperitoneal cytology.

I was mortified, my life turned upside down.

Anniversaries in Cancer patients are extremely important, because the further you get away from the initial treatment the better are your chances that you have succeeded in a cure. With endometrial cancer recurrences are rare after 3 years.

I worry less and less about recurrences, but the thoughts do occasionally come back.

It is extremely hard to imagine the past year without the incredible support from Ken. I cannot imagine going through this alone.

This blog has been extremely helpful for me, being able to write down my thoughts, what I was going through, somehow made it easier, it gave me a focus on many of the more difficult days.

Although I have often wondered why anyone would want to read all about what I was writing about, I have to say I am so appreciative for those who have followed this story, my story, along. It has made me feel good to know people cared about what I was going through.

I guess now I am writing just because some people seem to enjoy it, and also because what I am going through now, I believe, is something I want everyone to know about. From all I have read about hyperbarics, this very well could be the medical panacea. I am wondering if a few years from now, we will be treating all stroke patients with hyperbarics. There is even talk of post heart attack. The thing is that it all makes such clear sense physiologically.

The treatment with hyperbarics, of "traumatic brain injuries", one of the main injuries from the IEDs in Iraq, is showing great success at improved mental functioning.

Anyways, a big day planned, off to the "chamber"

Love Janet

jankenb @ gmail.com

week 2

2010-02-23T07:59:00.000-08:00

Hi there

Finished my 5th treatment yesterday. I have to say the whole thing is like a plane ride, only backwards.

I have the strangest feeling in my stomach with each treatment. It is a lot like hunger pains only different. I usually eat prior to going in, so it is not that.

The feeling seems to go away as I emerge to the regular atmosphere. I also notice an odd feeling in my lungs, not really a pain, just a hard to describe feeling that goes away within a few hours after the treatments end. WHen I am changing into my clothes at the end of treatment, my skin has this whole "lacework" of blood vessels, I gather from the high levels of oxygen.

I sleep incredibly well over here, not sure if that has to do with the treatments, or a different bed :)

I am still finding if I eat whole wheat toast for breakfast I have nausea all morning, if I eat white bread toast I am fine. I really am not expecting to see any real improvement until after this second whole week. I am going to start eating a regular diet, just so I know if there is any improvements.

I have to say I am feeling incredibly good about life these days. I feel certain that this problem will go away. I am very excited about my gardening projects. I have Basil, Tomatoes and Peppers coming up in my greenhouse flats and plan to "nurse" them along until April when I will plant them in the garden. I am very excited to perhaps have a garden that will get WARM enough that these things might grow in the garden.

Ken and I are so excited to have this little house, a total escape from work, it is like we get to go on holidays every 2 weeks.

Holding true to the Ken and Janet form, we have a bathroom half finished, a garden half finished, a paint job half finished in the living room.

Chewy has made friends with the rather large squirrels here in Eugene .... NOT! He just has trouble making new friends. Something about a large black dog barking and snarling that is just not endearing.

I will be here in Eugene for the next 10 days, Ken goes back next Monday for work.

The music is also going well, in that we have several "gigs" planned and are really starting to have fun with that and I am even considering the next cd,,,.....did I just say that..... I did promise myself after the last one NO MORE CDS. .....

So life is good.

I decided while I was at it to treat my lower lip with the efudex (5FU) as the lower lip bears the brunt of the sun, and I often have crusting of the lower lip. (I did call and ask my doctor about it) I did it for 7 Days and the lower lip just exploded. It got swollen, crusty, with bleeding and yellowish drainage. WHAT A MESS. I decided to stop treatments the day I started the hyperbarics. The lip continued to get worse for about 4 more days. Now it is starting to get better, healing along the edges, but the central area is still open, bleeding "pusy", but normal lip is starting to emerge. This has been much harder to do that on the face. But cancers on the lower lip are SOOOO common. Might as well deal with it all now.

Once I finish the hyperbarics I intend to start treating my arms and shoulders, they have definately bore the brunt of the sun.

I watched two episodes of criminal minds yesterday that were about a serial killer/pig farmer in Canada that fed body parts of his victims to his pigs ( I had to hide under the covers :))

Canadians out there...... does that sound familiar??

bye for now, love janet

jankenb @ gmail.com

valkyrie

2010-02-19T08:20:00.001-08:00

Well my 4th treatment is this morning and then Mark (our drummer) and I are heading back to Bandon, we perform tonite at the Green Spot in Coos Bay opening for Anne Feeney.

Had a really rough day on Wednesday, the nausea started during treatment and was fairly severe all night. I think it was unrelated to the treatment, moreso something I had eaten at lunch ??

The real problem I face is that I do need some fiber, or else I get terribly constipated, which makes everything worse. AND then when I have some fiber, I get terribly nauseated and the crampy pain. I take zofran for the nausea when it persists, but zofran causes constipation.

I take half of a percoset when the pain persists, but it too causes constipation. AND I cannot increase my fiber to deal with the constipation because that just makes the pain and nausea worse.

So yesterday morning I tried a liquid diet and that seemed to help .........but then I got hungry and by bedtime I was nauseated again, eating pretzels.

They say it takes a good 5 solid days for the angiogenisis to begin to start the healing process, so will not be looking for improvements for awhile.

Yesterday I decided to watch a movie during treatments, and got Valkyrie, a 2 hour movie, and my treatments are 90 mins. FUnny thing, at the end of 90 mins I decided I did not want to watch anymore anyways. (just got to the point where they all found out that Hitler was not dead)....

Today I have amadeaus to watch, perhaps a bit ??lighter??

Hope to see some of you tonite

LOVE

Janet

jankenb @ gmail.com

number 2

2010-02-17T18:36:00.000-08:00

You know since this all started a year ago, every step of the way, I have this cross coverage of people who I have something in common with.

First of all, the hysterectomy for the cancer, well on the one hand I have the commonality with those with cancer, and those who have had a hysterectomy.

Going on chemo I then had a commonality with all those of MANY different kinds of cancers, as the chemo is exactly the same, or very similar with many cancers.

With radiation, those with cervical cancer, endometrial, anal and prostate cancer all have pretty similar fields of radiation. With the radiation enteritis, I do have the one friend who had/has it.

Now with hyperbaric oxygen I have something in common with scuba divers.......

like KEN, I can talk about the feeling going down, and then the feeling coming up with the whole ear situation.

Finally something I am going through that Ken has first hand experience with.

Not that it makes a huge difference, he is always pretty darned empathetic anyways.

Second treatment today, had a lot of nausea, sure wished I could have taken some of my pills into the chamber, but you cannot take anything in. I take zofran for the nausea, and often get it after I eat. Well sometimes after I eat, I just never know.

Scott, the tech, always asks how it went, I told him about the nausea, and he said it was a sign of oxygen toxicity. I told him I do have a lot of nausea anyways, and that I gather it is just from the enteritis. He seemed to think that was more likely, I got the feeling oxygen toxicity at 2 atmospheres is not very likely.

I wonder if they would mind me taking in just one little pill.

You see it takes 15 mins to get down to the 2 atmospheres, and it also takes 15 minutes to come back up. So its not like you can open the door and get something.

I am on my own this week, next week Ken will be here, maybe he can take a picture for the blog.

My Basil and Tomatoes are big enough to transfer them into the little pots, so spent the morning gardening. I wonder how plants would do in chamber?

The good news today is that the tech was able to reschedule my time slot for Friday at 10 am which will give us lots of time to get to Coos Bay for our show at the Green Spot opening for Anne Feeney. We are playing at 8 and it would have been hard to make it in time with my regular time spot of 3pm.

Bye for now

Love

Janet

jankenb @ gmail.com

HBOT number 1

2010-02-16T18:22:00.000-08:00

Well, just a note on my first treatment today.

It actually turns out that Feb 16th was the day I got the phone call last year to say that my biopsy had been positive for endometrial cancer. I guess it was fitting for these treatments to begin today. The visit started with a few more questions, papers needed for the insurance company.

The tech then went over the details of how it would feel going "down". Since it was my first time today, he talked to me throughout the whole process of going down to 2 atmospheres. They do it slower the first time as well, so as to get you used to the process.

Basically I changed into a gown, and he wrapped me up in some flannel blankets ( the oxygen coming in can be cold). He then moved me into the chamber, and closed the door.

He said that the top of the unit was a bit deceiving, and he was right. The unit actually looked much larger from the inside than it actually was. I did have enough room to roll over etc, but not enough to actually sit up as I had expected.

Once at 2 atmospheres, my lungs DID feel sort of odd, but I decided it was not worth reporting as it was not pain, and it was not shortness of breath. There was no clock visible so it was hard to know where I was at in the treatment, but the second Law and Order on netflix ended just as he was opening the door at the end. SO I guess that will be my time gauge. 2 crime detective episodes.

I was very glad to start today, felt quite sick all morning, made the mistake of having freezer leftovers last night that contained brown rice. Even small amts of fiber leave me nauseated.

I am really hoping that this the beginning of the end of all of this stuff.

Sometimes I figure I really should just be glad to be alive and leave it at that, .......perhaps I just want to have my carrot cake and eat it too...

bad joke

Anyways will keep you posted

Love

Janet

jankenb @ gmail.com

concert tonite

2010-02-12T06:51:00.001-08:00

No pictures today

My face is clearing up fairly well, just in time for our big show tonite at Brewed Awakenings.

We will play from 7-9 PM Jaime Sterling will join us on violin for part of show and

Rick Franke on harmonica and mandolin for second half (I know it is pretty unbelievable that he can do both......)

Someone told me that they were advised to get reservations, I find this hard to believe about one of my shows, but must pass that on.

OH and I should mention, we DO have a new song. I finally got it together and DID IT.

It is called "It is SO hard to be a good dog"

Any guesses who it is about? Well the "subject" will NOT be there, something about food and the health dept.

From the few accounts, (only a few have heard it), it is going to be a big hit.... I should add that it was a dog lover who said this. (as opposed to a cat lover)

My treatments are NOT starting on Monday, as previously thought, turns out that I got bumped to Tuesday. The lady in my slot (3pm) missed a day in her treatments and so has to "make it up".

I do not remember all the details, but the guy who was explaining it all to me said something about the hyperbarics thickened secretions etc etc etc....and that you could not have treatments if you are sick with a cold. OF COURSE I will find out all the details about that.

There was so much he went through, so hard to remember everything. So I will once again need to be careful about colds.

Hope to see you tonite, come out and see Ken looking like he has been clawed by a cat......

Love

Janet

jankenb @ gmail.com

Good to go

2010-02-11T06:44:00.000-08:00

Well this is the closest picture of the unit I will be treated in.My visit to the unit yesterday was very interesting, I was seen by several people, each of them wanting to take a picture, WHen I finally convinced them that there was nothing to take a picture of, at least nothing that they would be able to take a picture of.....at least with THEIR camera, they just took a picture of my face, They wrote out 8 numbers and I held the numbers below my face and they took a picture of my face with the numbers...(most of what they do is wound care)

Now I am pretty sure this was the hyperbaric unit, perhaps we got lost and ended up at the jail ??

I was examined by the doctor ( I will have to say it was the most in depth exam I have had by a doctor in the whole entire year), he then told me that my insurance had approved the treatments in total. What this tells me is that the insurance companies have seen the studies AND that they have paid the bills in the past of people with radiation enteritis who did NOT have HBOT treatments, and it is worth their while to treat this early.

So my treatments start on Monday, and they will usually be at 3 pm, they like to keep t

hem at the same time. They also like to have the 5 days in a row, as the formation of the new vessels takes several days in a row to get going and to take too many days off, you go backwards too many days, and your treatments need to be extended for longer than 8 weeks to make up for it.

I can watch TV, or dvds of my choosing, but the person outside the unit manages them for me.

So got to find a TV series that Ken and I have not watched during chemo and radiation.

I have much to learn about this whole process, and much to pass on to you

Bye for now

Love

Janet

speaking of skin cancers

2010-02-10T08:43:00.000-08:00

I have such a great story.

Last week I was extolling the virtues of Efudex to a friend with much worse sun damage than me, and she showed me a lesion on her arm that had been there less than 2 years and had recently changed.

I took one look at it and knew it was a melanoma.

The history and the way it looked. Then I thought it had to come off right away, and knowing the system, that she would likely see her doctor, in several days and then wait for a consult etc etc etc, not to mention the costs, which might delay things further, and for her to get a day off work etc etc etc, I was suddenly reminded of me a year ago, I saw this doctor in the clinic, she heard my story and said, well why don't we just do the biopsy right now. For which I will be forever grateful, in that likely by the time I had gotten another day off and to find a day I could schedule with her etc etc it might have been some time before I got back to see her. We did the biospy that day and my cancer was picked up.

Thinking the same for this friend of mine I said, why don't I just take that off right now. Well it turned out that we did it the next day. " NURSE KENNY" provided comic relief while I "operated" on her arm. It all went quite wonderfully, the lesion was about 1.2 cm.

Well I called pathologist yesterday and it WAS A MELANOMA and it was in situ, which meant it had not invaded at all, and that all the margins were clean, which means that the procedure removed a complete cancer. Gawd some days I just love being a doctor.

I have included a picture from the internet that looks pretty much like her lesion looked.

Ken and I are off soon to see the wizard, the wonderful wizard of oz........

Wait a minute, I am not in Kansas....anymore

We are off to see the doctor, so I can get a new small bowel. :)

It is at the old Willamette-Mackenzie hospital on G street. I really have to wonder about a city (Springfield) that has never had anyone worthy of having a street named after them, so they just use letters....sad...

Bye for now

love

Janet

jankenb @ gmail.com