Wednesday, March 21, 2012
Break from chemo = whole new me!
1 extra week off chemo = a whole new me! I feel so much better. First, I've been healthy since Saturday, which is crazy in itself. I'm sure I had healthy times during the first 13 weeks of treatment, but I can only remember one fully healthy day throughout that. So 5 days in a row is a huge gift. The Lord definitely set this all up so I could have a break. I had no idea how much I needed it until I felt well again. On Monday I took Abigail out for a special time and realized it was the first experience in a long time that I didn't want to end. Throughout chemo I've been doing enjoyable things that I could appreciate, but inside I always wanted them to end so I could go home. It came on slowly enough that I felt like that was just who I a now, instead of a temporary problem.
With my newly improved braine made some observations about cancer treatment. First, all the fuss about the governor's new state employee insurance changes makes more sense. In case anyone didn't know, this year (without any notice at all for me), it changed so state employees have costly co-pays for "special" drugs. Before this year all my chemo went as expected; the doctor ordered the drugs and the chemo nurse injected me. No big deal. Now there's a third party I have to go through, so the doctor orders the drugs and I have to approve them, pay $60-100 each, and I'm supposed to arrange for them to be delivered to my home, keep them in the fridge, then take them with me to the doctor for him to administer. I was able to change my address to Rassam's office, so they get and store the drugs for me, athough that means they also get my receipts and some bills because of it. Anyway, my biweekly bill for the doctor visit + drugs was $70 before Christmas, and after that it changed to $370. We're fine because of the fundraiser, but that's a big change for the average joe. A worker told me tons of people are just stopping their treatments because they can't afford it.
Anyway, I thought this was all crummy, plus chemo drugs are sensitive-the nurse has to wear a special chemo gown and gloves, so I also think it's extremely irresponsible for this third party to insist on sending the drugs to our homes. I don't want the responsibility to protect, store, and transport them. Regardless of all that though, the first treatment I had was at the hospital because the third company couldn't get my drugs out in time. I just got a notice that insurance didn't pay it yet (no big deal, I think they're just late, not billing me), and the fee for 1 treatment was $33, 709. THIRTY-THREE THOUSAND DOLLARS!!!!! For one time! I got 4 of those, and 12 of this other one that I think is cheaper. And this is for a treatment ALL my doctors say canNOT cure me!!!!!!!! Can you imagine what it would cost for a treatment that worked!!??? No wonder the nurse at the hospital kept trying to feed me. That lunch I tossed out probably cost $250. So. Thank the Lord for insurance. It seems like one sicky costs them so much more than they could ever make from the healthy people. And I don't blame the state for wanting a little more cash for our special drugs. I do really pity those on fixed incomes who will suffer from it though.
That's that. Don't read it as a political statement, just a story. The other thing I noticed is about how little it mattered to Rassam that I lost my smell (it's mostly back, for now, btw). When following a minute amount of research on cancer I learned that they always measure "quality of life" as they search for the ideal balance between longer survival (drugs), and decreased quality of life (side effects). I believe this is the reason Rassam doesn't want me to get radiation after my mastectomy, but I need to ask him to be sure. Anyway, a common quality of life indicator is weight loss. Five pounds is a problem to them, but I'm not sure if that's the definition. I find it fascinating that they call this "anorexia". As if the weight loss caused by virtual inability to consume or digest food is now a mental illness. I'm sure a man came up with that one. My weight has fluctuated severely over my life, but has oddly stabilized during chemo. I actually gained a few at first, but when I started the anti-cancer diet it stopped. I happen to think I deserve to lose some weight, given the restrictions I follow and how much cancer stinks. But, Rassam is glad I haven't "become anorexic". The point is they pay much more attention to my weight than my senses. I know it's not good for cancer patient's health to lose weight, but I would LOVE to assure all researchers that my quality of life was considerably lower with the loss of smell and most taste than it would have been if I dropped a few pounds.
Tomorrow is my next chemo treatment. I'm really excited, because I'll only have 6 more after that. I'm going to ask if it's possible to switch to the triple-strength one that I'd only have to get every three weeks. It might be worse but perhaps I would have more recovery time and be happier overall.
"Sing to the Lord with thanksgiving: Make music to our God on the harp. He covers the sky with clouds; he supplies the earth with rain and makes grass grow on the hills. He provides food for cattle and for the young ravens when they call."