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 @

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