my winter garden

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

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

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

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

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

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

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