Sunday, January 31, 2010

the true costs of insurance

Ken and I are on our way back to Bandon. After a good week, I think we are getting pretty good at "being retired". We go over and practice in Eugene, then go back to "work" in Bandon.
We bought a cabinet on final clearance at Pier One imports and we are going to tile the top of it
and convert it into a sink cabinet. I will try to take pictures.
Its funny, but Ken and I have been renovating houses for years now, it was a joke back in Chilliwack that once the Bates had finished replacing the flooring in a house, it was a good sign that they were moving soon. Ken does some very fine woodworking, and I have done a lot of tiling and painting. It just always seems, if you do it yourself, you can get very creative.

We have not done much of this ( at least I have not) for the past 6 years. Writing songs, recording cds and then cancer therapy has kept me more than busy for all this time. It is so much fun now to have the time to just putter away with these little projects.

I have been feeling pretty good as well, well up until today. I decided a few days ago to try reintroducing some fiber back into my diet, as the gastroenterologist had suggested. Whole wheat bread a few times a day and just a few peas in a rice dish last night and everything came back today, the nausea and the colicky pain.
So it is clear that the small bowel is not able to deal with any fiber at all.
Zofran works very well for the nausea and the great thing is that it is now generic, so VERY cheap and it does not make you sleepy.
I changed a few things on my medical insurance policy this year, since I had to pay so much out of pocket last year, I decided to lower the deductable down to 500, from 7500. My monthly cost went from 350 a month for (just) medical and a high deductable, to 650 and month and a lower deductable. The amount my insurance paid out for me last year was about 100,000 dollars. I guess I was feeling kind of badly about that until I calculated how much our family has paid out in insurance monthly bills since we moved to the US. We have almost never used our insurance, being fairly healthy up until now
I calculated that we have paid 160,000 for health care in those years, and that if we keep paying what we are, it will cost another 120 thousand before we qualify for medicare.
It makes me wonder how many people ever use in medical expenses the amount they pay in premiums during the pre medicare years, ie 65 and under. At my current rate of premiums, that would be 507,000 per person for 65 years.
I have found though, that insurance is good company to be in.
Bye for now
love
Janet
jankenb @ gmail.com

Friday, January 29, 2010

actinic Keratosis

Well Ken and I are enjoying our little house over in Eugene that we rent from the bank :)
I am working on a very complicated colour scheme in the bathroom. Some parts of it I have repainted 3 times. But it is fun. Right now I am working with purple, pink and black and white.
Ken and I are thinking of this place as our "place to practice being retired"

We are working on one week and off one week, so spend the off weeks here. We are riding our bikes to town and yesterday went looking for hats, this time not to cover the fact I have no hair, but to cover my hair.
Not that I am bragging or anything (well maybe I am) but it is growing in SOOOO thick, it is just standing on end, and I forget all the time to comb it. Ken is always looking at me on our way somewhere and telling me it is standing straight up. It IS hard to remember to comb your hair when you have not had any for 8 months. I think to myself "who cares if it is standing on end, at least I have hair". I do think the back is growing in curly, just noticed that.
I am actually getting my hair cut on Monday, the first hair cut in over a year. (well except for that horrible day in March last year that my remaining hairs were shaved off.)
My face is looking worse every day with this efudex treatment. I am putting the cream on twice a day and am supposed to do it until the lesions crust over. I only thought I had 2 of them, but when I put the cream on, large areas became red and inflamed, meaning that those areas are areas of pre cancers. So I am telling myself that I am going through this now to prevent invasive treatments years down the road. The lesions are getting somewhat painful and since they are on top of my nose and cheeks, (the area the sun hits) wearing glasses hurts. Then I remembered I have a rough area on the top of my lip and put the cream there, and now my lip is swelling, and red and inflamed. All areas that the sun hits.
Once the lesions crust over, then you stop the cream and it takes 3-4 weeks for them to heal. I have read where they are using this stuff to get rid of wrinkles.....interesting......

Only problem is that we have a concert at Brewed awakenings ( Bandon) on the 12th of February at 7pm. Hope my face looks better by then.
We are also opening for Anne Feeney on the 19th of February at the "Green spot" in Coos Bay.
That show is at 8pm.

Someone told me that Michael Jackson had his own hyperbaric unit. hmmmm
Love Janet
jankenb @ gmail.com

Thursday, January 28, 2010

HBOT

Well it has been an interesting few weeks.
It is very hard to have a "condition" that 3 doctors have verified that I have, and for all three to say that the only treatment is to follow a low residue diet, when everything I read in the medical literature suggests that the diet does nothing more than cover up the symptoms.
The literature also suggests that this is a progressive disorder that has a mortality rate of as much as 20%. I have really struggled in that my cancer had a mortality rate that was similar. (much higher without chemo and radiation and lower with the chemo and radiation I had)

Radiation enteritis can be acute or chronic, and they are both quite different entities.
Acute radiation enteritis is the diarrhea etc you have during and possibly the first few months after radiation,( I did not have a lot of diarrhea, only the skin problems). Acute radiation enteritis is a self limited disorder that goes away usually by 2-3 months at the most. It is essentially caused by the radiations effect on the mucosa (or the inside walls) of the gastrointestinal tract. Most people who undergo pelvic or abdominal radiation experience some form of this.
These cells that are damaged essentially regrow and heal.

Chronic radiation enteritis usually occurs between 6-18 months after radiation therapy to the abdomen or pelvis. It is much less common, perhaps 5% of those who undergo radiation develop this. Having had surgery, radiation, brachytherapy AND chemo increase your chances of getting it.
It is essentially a vasculitis that causes the blood vessels that supply the bowels to essentially close off. (sort of like what happens when you have a heart attack, when a blood vessel is blocked then all the tissue that it normally supplies with oxygen dies)
The difference here is that these are tiny blood vessels that close off, and so tiny areas "die".
This leads to scarring and the area affected stops functioning.
So what you end up with are multiple scarred areas of the bowels, which eventually can lead to perforations and obstructions. Some people spontaneously resolve, and there is no way to know which will. This can affect the small bowel OR the large bowel, and for me it seems to have affected the small bowel. It would seem that the more serious consequences would occur with the small bowel, since it is such a vital part of the gastrointestinal tract, it is were all of our food and nutrients are absorbed.
I am currently OK as long I do not eat any fiber..... a few times the pains have come even when I did not eat any fiber.
I have reviewed all of the literature and there is one treatment that has been shown to "cure" these radiation injuries: Hyperbaric oxygen therapy. (up to 75% in some studies)
Although there seem to be just as many studies on this therapy as there are on the treatment of my cancer, this treatment is largely ignored by the medical population. This is really disappointing.
I contacted the leading researcher based in Toledo Ohio,( he is a radiation oncologist and hyperbaric specialist). He said I should be treated.
I found out about a hyperbaric doctor in Eugene. ( I have a friend who went through the 8 weeks of treatments up in Portland last summer, she had had 2 years of rectal bleeding symptoms, and she is now 75% better.)
SOOOO I went to see him yesterday. He seemed more informed about radiation enteritis that anyone I have yet spoken to. He has suggested I should do the treatments, and the sooner the better. There are also studies out there that suggest that the sooner the treatments are started the higher the chance of a cure. This totally makes sense as once the damage is done, hard to totally turn it around.
So stuck with the situation of whether to wait and see if this resolves in a couple of years as my gynecologist oncologist suggested it might, and risk that it would not resolve and then having a lower chance of a cure with hyperbaric treatments, or to go ahead with the treatments now.

I have an appointment with the doctor at the hyperbaric unit in 2 weeks. In the meantime I will need to find out if my insurance will cover it, my friends insurance did. The cost of the treatments is about 20,000 dollars. (which is a fraction of what the chemo or the radiation)
The treatments are usually 90 minutes a day 5 days a week for 8 weeks. You basically go down to 2 atmospheres, which is like underwater diving. ( I do not know how deep that is equivalent to) You need to be able to "equalize" your ears, like when you come down in the plane. Apparently 1 person out of 5 develops a temporary myopia (really bad vision), so for awhile I might not be able to drive. This goes away. That is about it as far as side effects go. What a dream compared to chemo and radiation.
So that is essentially where I am at right now, Ken and I are figuring out if and when we will do this, likely soon if we choose this route, and we most likely will.

Bye for now
love
Janet Bates
jankenb @ gmail.com


Saturday, January 23, 2010

primulas in bloom

Is it already time for the primulas to bloom, I hope the frost will not be setting in (again) ( an inside joke from one of my songs)
I am not going to post pictures for a little while, as I look a bit like a leper right now.
I have had a few concerning lesions on my face for a few years, and had an appointment last March to see dermatologist, but that got superseded by chemo. I guess for quite awhile I figured that perhaps chemo might do something to the lesions on my face... NOT..
However there was a barnacle on the back of my head that fell off during chemo :)

Dermatologist said I had AK (actinic keratosis), he said in fact I have several, he said "here a K, there a K, everywhere a K K) (To use his exact words, he is quite funny)
Actinic Keratosis is a skin condition that is felt to be a precancerous lesion and can lead to skin cancer. It is caused from sun exposure and I have had more than my share of that, I have been more careful in the past 10-15 years with sunscreen etc. So I am on the treatment for that which is Efudex ( 5FU), which is basically an anticancer drug. In its IV form, it is used to treat many cancer. Its official name (sp) is 5 flourouracil. Like all the chemo I have had, it destroys rapidly dividing cells. You put the cream on twice a day and after about a week the areas of fastest cell turnover, start to become red and inflamed, then the damaged cells slough off. Then over the following 6 weeks the area heals. Perhaps we will take photo so people know how to know how long to stay on the cream. Basically you use the cream until the areas "crust over" then you stop and let healing begin.
On the radiation enteritis front, Ken and I are gradually changing our diet, and he is sneaking in his fiber when he can. It is becoming quite obvious that how I feel is pretty dependent on what I eat (or what I do not eat). We went out for dinner (which we seldom do) the other night and I had salmon and mashed potatoes, (all allowed on "the diet") and woke during night with severe nausea that went on for hours despite the anti nausea meds. I had to lay completely still to avoid throwing up. Hard to know what I did wrong. I am also starting to pass a lot of bloody mucus with the BMs, which I will keep an eye on, but sounds like that was to be expected as well. If that gets to be too much, I will likely contact the gastroenterologist. The "colic" comes and goes, but is better than it was.

With regards to the lymph edema, just while I am writing this, my new thigh high stockings have arrived. Not really something that would go with" a merry widow", but cute all the same.
The occupational therapist I saw with regards the lymph edema showed me some massage and gave me lots of information about lymph edema.
She suggested as well as wearing the thigh high stockings to also wear the "spandex" type of bike shorts because with exercise, the perineal area as well as the lower abdomen can also become edematous.

Speaking of running, I am going to be quite serious about it now. I feel I have had a lot of losses of things that were important to me and I really NEED a gain.
Running is going really quite well, I have been 3 times this last week, and realize I just need to be MUCH more careful about stuff than I used to.
We are planning on performing at the "brewed awakenings" on Feb 14th, I will keep you posted as to the times etc.

Bye for now
Love
Janet Bates
jankenb @ gmail.com

Sunday, January 17, 2010

pelicans



Well we are now back in Bandon, following a low residue diet with all the enthusiasm a granola girl can muster. The pain and the nausea has gotten a bit better each day, to the point that yesterday I was feeling pretty much back to normal. Today the nausea is back, perhaps I just have to get used to it all.

After much time thinking about this and trying to understand it all from a very basic level, I think I have come to some sort of understanding. So now you are going to get the "janet description", which may be relevant to many other GI problems.
When you eat, the chewed food goes to your stomach and is bombarded with the stomachs acids and basically broken down with a combination of the acids, the bile (which emulsifies the fats) and enzymes etc.
Most molecules of food, and water and minerals are absorbed through the small bowel. All that remains are fiber and residue. Residue is what is left after digestion, and fiber is what cannot be broken down. So by going to a low residue diet (which is just a low fiber diet with limitations on milk products) you decrease the workload of the bowels, less is passing through them. If they are inflamed or narrowed, the less going through them, the less pain.
It is not the healthiest of diets, as it illiminates many fruits and vegetables. When I saw the gastroenterologist on Thursday morning, he suggested I follow this diet for a month and then gradually experiment with adding more fiber gradually, as I tolerate.

I am more and more seeing that this is all just par for the course and things I will just have to live with. The small bowels have changed and do not allow things through with as much ease and they did in the past. Stuff like fiber is more apt to get stuck, if only for a moment at a time, but that is what is causing pain.

Work is going well, in that Ken and I go to work together each day, divide up the patients and work together. With me feeling so much nausea, it is hard to know how I will feel each day, so this way, if I am not feeling well, Ken just takes over. We are working a week on and a week off.
I have included a picture of the pelicans that were down on the wharf the other day, AND ME.
However we did not all fit in the same picture so I put them separately.
I have never seen so many pelicans in my life.
I am going to post this, and then work with Ken to get one of our house concert videos loaded as well
Love
Janet
jankenb @ gmail.com



video

Tuesday, January 12, 2010

radiation enteritis

Well I went today to see my gynecologist/oncologist.

She heard the whole story and said it sounds like you have radiation enteritis and said that she had had several women over the years with this and what they have to do is dietary modifications ( a basic low residue diet), and to take the pain meds when I need them, and the zofran when I have the nausea and that usually it goes away after a few years. Having read some of the "other " ways the enteriis can go......perforations, fistulas and eventually TPN. She said that the more severe cases of radiation enteritis were amungst those who had vascular disease already. (Ateriosclerosis, or Atherosclerosis, heart attacks angina, etc), and in smokers.Finally something good from quiting smoking all those years ago, and here I had to come down with the one cancer that has a lower incidence in smokers.
She said that having healthy arteries decreases my chances of this advancing.

So I will be seeing a dietician this week, and a gastroenterologist.

I have found that following a low residue diet the last week HAS helped the pain. The very hard thing for me is that I am one of those granola types, lentils, black bean soups, nuts whole grains, IS my whole diet. I have spent years improving my diet to get to this level. I had even been throwing around the idea of writing a cook book, I am THAT into nutrition.
So this is a blow to me, but a huge relief to have someone talk to me who has seen this before and what the natural course usually is.

Boy is sure is going to be hard to eat white bread.
However on the flip side...... I think mushrooms are just fine, as is pizza

I had 2 pieces of whole grain toast today and have had terrible pain all morning.
So it is clear what sets it off.

Love
Janet

Monday, January 11, 2010

"its complicated"

Well my sister told me that my blog yesterday was too complicated. Perhaps it was.

When I think of the maze of info I have read through over the past 3 weeks, it is hard to know where my head is at.

I have to say I have not posted in some time, I guess because I have been quite down, perhaps feeling sorry for myself.

A few nights ago Ken and I were sitting talking about what a drag these new issues are, and I remembered back to almost a year ago reeling at the recent diagnosis of an advanced cancer and

I realized this is nothing.

I guess we all just want to be normal and have no problems. Many times over the past year I have thought about all the people who have problems that start in their youth. Problems such as.... a girl I went to school who was blind from birth, those who developed diabetes as a child, those with chronic Crohns disease.......I could go on and on.

I have often thought how lucky I was to be able to be a long distance runner, how lucky to have all the parts of the body still functioning so well to be able to do that. How lucky I am to see mushrooms from a distance without glasses on, and have the ability to crawl under bushes and over stumps to get those mushrooms into my bucket.

At the turn of the century the average life expectancy was 56. (the PREVIOUS century) So very lucky to have been born at a time when we get to live longer.......


Last night I discovered I have edema in my right leg. I had really been hoping I would not get lymph edema, but now I realize there was little chance of NOT getting it. Apparently as many as 80% of people who have had lymphadenectomy (removal of all the lymph nodes), radiation AND chemo will get some degree of lymph edema.

Lymph edema is where one of your limbs swells due to lack of an adequate lymphatic system to drain it.

Women who have had mastectomy with all the lymph nodes removed and/or radiation can get it in their arm. I do not think this happens as much as it used to because they are not removing as many lymph nodes with breast cancer now that they have new ways to detect which ones are malignant. They do not always take them all anymore. With gynecological cancers they take them all.

One good thing is that I have just recently found out that in Coos Bay, (half an hour away) there is an occupational therapist who specializes in lymph edema. I am sure I will have a lot more info on that.


Like everything else I guess I will have to adjust, I am fortunate to be alive and I keep reminding myself that. Oh and I am incredibly fortunate to have Ken who is always SOO supportive. I feel sometimes that lately I must sound like a nutcase with all my complaints.....

He just takes it all in stride.

I guess I hate that my "health issues" have come to consume so much of our lives.

...you say nutcase like it is a bad thing...... :)


Love

Janet

jankenb @ gmail.com

Sunday, January 10, 2010

New issues related to treatments of previous issues

Isn't that the way medicine goes these days. You treat one thing and the treatment causes something else. Right now it seems like a cycle that once you are on it, hard to get off.
I was doing quite well, until Dec 22nd.
I awoke during night with terrible abdominal pain and nausea. Since the abdomen was not tender (ie it did not hurt to push on it), Ken and I figured it was not an urgent problem. In the morning it had improved, but waxed and waned for the next several days, at times being more severe and at times going away, until Dec 30, I woke up with more severe cramping pain, which this time was tender, but taking one of my pain meds left over from when I had surgery made it go away, we were planning on going to hospital at this time. Ken and I figured that narcotics relax the bowels and take away the spasm. Went to hospital the next morning and the xrays showed abnormal patterns but not specific and clearly not an obstruction, possibly an ileus (which is where the bowel just stops) (an ileus is what happens postoperatively).
I then spent several days (long story) trying to get an appointment with either my surgeon, OR my radiation oncologist. I finally on Friday got an appointment for tomorrow in Eugene.
My symptoms are a crampy abdominal pain about 50% of the time, usually after every time I eat and during the night, I also am quite nauseated at times. I have lost weight.
Oh and I did get in to see my chemo/onc who felt he this was not in his expertise, but to rule out the cancer recurrence did a full CT scan last Thursday and it was normal, WHICH IS GREAT. So we are pretty sure this is not related to the cancer.
So for anyone who has followed this blog along, you will know that my usual "approach" to every new "situation" is to start researching it, finding out the worst possible scenario and panicking .......RIGHT ??
So of course that is what I have done.
There are some very interesting bits to it, so I thought I would include it here.
The most severe thing that could be causing this (next to a cancer recurrence) would be something called radiation enteritis. It is a late effect of radiation to the abdomen or pelvis. It can affect the large OR small bowel.
When it affects the large bowel it causes bleeding from the bowels, and from the small bowel it causes crampy abdominal pain, nausea, vomiting and weight loss.
It is basically a vasculitis (inflammation of blood vessels) of the blood vessels that supply the bowels, leading to ischemia (decreased blood supply like angina of the heart) and eventually leading to scarring, and perforations of the bowel walls, fistulas( which are abnormal openings between the bowels and other things such as the vagina.)
You can live without your large bowel, but you cannot live without your small bowels, and so in more severe cases people have to go to total parenteral nutrition, which is when all of your nutrition is by intervenous. The scariest part is that the mortality rate is worse than for my cancer. HOWEVER......
Other things this could be are multiple adhesions which are scar tissues that form after operations that "fix" the small bowel to certain parts of the abdomen (usually the small bowel is free to go where ever it wants in the abdomen, the large bowel is more fixed in one place).
After a hysterectomy, since the pelvis is empty the small bowel often goes down there and hangs out there. Unfortunately this is also where the radiation was focused. And since the area is fresh from surgery it is ripe for something to attach to it, leading to intermittant partial obstructions of the small bowel and/or complete obstructions eventually.
I was told when I started radiation that I had a 35% chance of a small bowel obstruction.

So I will be seeing the radiation oncologist tomorrow, she said she will likely recommend a gastroenterologist. Ken and I spoke to a gastroenterologist at OHSU the other day who said this sounded like partial small bowel obstruction and suggested a low residue diet. So I have been doing that. It is very hard since we are "all about fibre". Sometimes these things can clear up themselves.
The other cool thing is that I have of course been researching the radiation enteritis, and have read that hyperbaric oxygen chamber treatments were being tried to treat this, with a fairly good success. I guess when I read about it, I thought it was likely just experimental still. However I spoke with someone yesterday who had radiation enteritis who underwent the hyperbaric oxygen chamber treatments last summer and it has improved her problems considerably. So now I am of the thought that whatever we find this to be, there is likely going to be SOME treatment. That is a huge relief to me.
Oh, I guess I should explain..
Hyperbaric oxygen is oxygen at a higher pressure. When you go up to the top of everest, it is hard to breath because the oxygen pressure is so low in the atmosphere that it is harder to oxygenate the tissues. When you go below sea level the oxygen pressure increases, increasing the transfer of oxygen to the tissues. A hyperbaric chamber is like being deep under water.
The effects of hyperbaric treatments are:
1) It increases oxygen concentration in all body tissues even with reduced or blocked blood flow.
2) It stimulated the growth of new blood vessels to locations with reduced circulation, improving blood flow to areas with arterial blockage. (this is the effect that I believe would most help radiation enteritis
3) It causes a rebound arterial dilation after the treatments resulting in and increased blood flow to compromised organs
4) stimulates an adaptive increase in superoxide dismutase (SOD), one of the body's principal, internally produced antioxidants and free radical scavengers; and,
5) aids the treatment of infection by enhancing white blood cell action and potentiating germ-killing antibiotics.

I found this quite interesting.
So I am quite dissapointed that this problem has come up, I had hopes of kissing goodbye to 2009 and to everything associated with it, but I guess not yet. Perhaps it is because I did not stay up until midnite to make sure it was gone for sure :)
I wish everyone a happy New Year and will keep you posted
love
Janet
jankenb @ gmail.com