Tuesday, November 30, 2010

radio show tonite

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.


Thursday, November 25, 2010

and them bones...

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
jankenb @ gmail.com

Wednesday, November 24, 2010

home is where the garden is

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

jankenb @ gmail.com

Friday, November 5, 2010


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.
jankenb @ gmail.com