Thursday, July 29, 2010

a better day

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

jankenb @

Friday, July 9, 2010

oregon country fair!!!

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 @