Cures for the Wealthy?

Earlier this month, the news was full of a new treatment was approved by the FDA which had been developed for late-stage prostate cancer. In this treatment, white blood cells were removed from the patient's body and treated with protein fragments from the cancer cells. This stimulated the immune response of the body.

This seems to me, at least on the surface, to be a great break through as I feel that the key to battling cancer is to look at the individual's immune response. After all, these are our individual cells which have run amok. Granted, I'm not a scientist, nor to I play one on T.V., but it just seems logical.

What doesn't seem logical though is that one of the reports I heard about this said that it was extremely expensive as it isn't mass-produced and that it takes a fairly long time in order to do it. Does this mean that if this IS the way to treat cancer that only the wealthy will be able to take advantage of it? Even now, it is a bit maddening to know that there are lots of adjuvant therapies which I could do, if I was willing or able to shell out the extra money to do it. In this case, I mean therapies which are not necessarily proven to stem the tide, but seem to have positive effects, such as qi gong, additional health suppliements, and other non-traditional therapies.

The other maddening thing is that this treatment only resulted in an additional four months of longevity in the study group. If I were part of this group, I would sure as heck want more than just an additional four months....In other words..once again, we are just not getting the full picture.

How do you tell your mother?

I know I've talked about this before....but I finally had to bite the bullet. This last Thursday I got the word that I have multiple bone metastases ...shoulder, sternum, ribs, vertebrae and another on the pelvis.

My mother will be 80 soon, and my dad is 88. My mom has severe back trouble now and is in a lot of pain, and my dad has congestive heart failure and is just fading away. Both of them are of very good mental state.

But I dreaded this. How do you tell your mom and dad who have their own health issues that their youngest child is once again in the trenches fighting cancer?

I know I have lived with this for a long time, but even so, I don't want them to worry a lot, and I don't want them to go through the anguish of watching me with this disease. It's hard when something like this happens.

My husbands family has a habit of sweeping things under the rug. I tease them that the family motto is "Diga Nadie" ---"tell no one." This is kind of a laugh as usually when this phrase is used, the teller has already told everyone and you find out later that you've been keeping this secret that everyone knows. Secretos. Secrets. Lots of them. This is not the way I was raised.

I feel that I owe my family the right to hear significant news from MY mouth so I can answer questions. It didn't make it any easier. But I think I made it better for my mom. She still said she was going to be "down on her knees" (praying). That's OK. Still, I wish I didn't have to deliver such news. Meeting it head on is always the best policy. What I can conjure up in my head is usually worse than whatever anyone has to tell me....and I feel that I owe it to everyone to lay it out. The good, the bad and the cancerous.

Same Song, same refrain

Yesterday's P.E.T. went fine. Well, lets put it this way. Although the technician DID try to find the vein in the center of my arm, and failed as no one has ever been able to get that one, he was able to access the old faithful vein in my wrist. I assure you, it is far more painful there, but when your veins are as bad as mine, you take what you can get.

Today, however, my oncologist called. Not a good sign when your doc calls you the day after you've had the test. Indeed, the suspicious lesion on my pelvis (the acetabulum) has gotten bigger. In addition, since my last P.E.T. in late September, there are new lesions on my sternum, shoulder, ribs and vertebrae. Given the rise in my tumor markers, this doesn't surprise me.

Was I hoping for a negative finding? Of course. Is my prognosis completely black? No. According to my doc, there have been a number of new drugs developed which might help and give me many more years. In addition, a number of new chemotherapies have been coming on the market which are good or have been very promising.

One of the things which surprises me the most is my reaction to all of this. No tears. I'm not even really upset. I think that is because I know at present that while death stalks me, it is not any more imminent than it was yesterday. I handled all of the struggle with coming to terms with my death when I was told I had stage IV cancer 13 years ago.

Earlier this month, I went to the funeral of an old family friend, Margaret Norton. When we lived in Bronson, we did lots of things with the Norton family. The oldest son, who was a couple of years older than my brother, married a woman who died of breast cancer in 2006. As she was dying, she said to Margaret, her mother-in-law, that she regretted not being able to live to a great age and to be a woman like Margaret. I can understand this completely. As a child, and then later as a young woman, I always thought of myself as growing old. Maybe I still will, although the likely hood of that seems more remote as I continue down this journey. I think I'm OK with that.

I do know that when I had cancer first in 1994 when my daughter was 15 months old, I prayed to be able to live until she was older. Then again, just 4 years later, I was praying the same thing. I still would like to be around to see her graduate from college. I certainly am most concerned as to the impact this will have on her life as I feel that things for a teenager and young adult are still a bit tenuous and mom is still needed even if there are maelstroms in between times. I want her to be able to face things without thinking about me or worrying about me.

Tonight, when I told her, she cried a little, and snuffled something about how she was nasty to me....but I think she'll be ok. We'll get through this. Even though the tree seems to be a bit barren, it has budded out now, and leaves will come and go and come again. Whether I fall like those leaves now, or years from now is rather immaterial. I have no control over that. I can just as easily have been killed by the idiot on 571 today who pulled out in front of me as not. I can live with cancer a few or many more years....I have no control over that. I can enjoy tomorrow for what it is...and the next day after that...and the day after that? We'll see. One step at a time. One moment in time.

PETs

Drats. Last Wednesday, my teenager had a tonsilectomy. She's done really well, but for the last two days has been complaining of a "swollen tongue." As my husband is allergic to penicillin, this was a little alarming. Plus, she's milking her recovery period for all she can get.

She's done well, and it is really less traumatic than most would be, but because of this, and other things I have on my mind (like getting the garden together, trying to sort out the house, keeping up with my book business, and finish quilts for shows) one major piece just slipped my mind.

Tomorrow, I will have a P.E.T. scan. P.E.T. stands for Positron Emission Tomography. A fancy way of saying they are going to map what is happening inside my body. It is a nuclear medicine method of seeing in three dimensions. Tomorrow, I will go in and have a radioactive form of glucose injected. After about an hour of sitting and doing NOTHING (not even reading which is a great hardship to me) I will go in and be scanned by laying on a movable bed which passed through a scanner. The glucose will be taken up more readily in areas of higher activity...such as in cancerous areas since cancer has a higher metabolic rate than other areas. Areas of healing, and other things can also be picked up.... Basically, as the radioactive particle decays, it gives off a positron...usually this involves gamma rays (and no, I'm not a Man in the Moon Marigold for anyone who remembers that book).

In order to prepare for this, you cannot do any strenuous work (well, it was a good thing I had to take the teen to the doctors today to figure out the tongue or I would have been digging and weeding the garden), shouldn't drink any caffeine for 24 hours, limit the consumption of sugars and carbohydrates (oops, I really blew that one, not so much for the sugar but most of my food today was high in carbs), and I cannot eat for 6 hours previous to the test (check, that one at least I can do).

I'm not looking forward to this. Not because I'm afraid of the results, or because I have problems with the radioactivity (hey, for a little bit I can glow), but because I don't really want to give up the time it takes. Pretty silly. I do think that they won't see anything with this....or maybe they will see old damage. Who knows? This is one more step in trying to figure out what is going on. We'll also see more when I have my blood tested next month for the tumor markers. Lets just see if this godawful expensive medication and infusion treatment I'm on is doing anything which we can positively see.

Don't be Chicken! Participate!!!!

One of the websites I ran across a while ago is Dr. Susan Love's Army of Women. Now part of me balks at the title of this, as men get breast cancer too, but I do understand why this is the name.

One of the things that this website does is that it gathers volunteers for various research studies. Often, I don't qualify, but recently a study came across my email in-box which I did qualify for and which I feel passionately about. This is a study of women who developed breast cancer before the age of 40.

You don't have to be currently in treatment. You can be out of treatment for many years, like me. You can have recurrences, like me. I can't remember if it also calls for siblings and mothers of young breast cancer survivors or not... It does mean that you have to get some blood tests done.

To me, thats a small enough price to pay. When I look back, I shudder at the fact that I have spent more of my adult years fighting breast cancer than being healthy. I cringe at the fact that my daughter doesn't remember a mom who wasn't battling and that my husband only had three and a half years of marriage to a woman who wasn't ill, recovering or living under the shadow....I want the researchers to find out as much as they can so that others don't have to go through this.

Don't be chicken. Please, join the Army of Women. If something comes along that you can participate in, do. With this we might more quickly find a cure.