Tuesday, January 4, 2011

Reading Sean's Burgundy Thread on the Myeloma Beacon. He mentions the $7,200 bill for 21 Revlamid tablets.
Okay, I get that the company needs to make a profit, that there is risk investing in research and trials and all the rest with no guarantee of a viable product. I have been a stock holder of some biotech companies, and to attract investment, the company needs to have return on that investment. Okay.
What I don't get is how all the money we donate gets used in helping these companies with their research. They attract millions of dollars in donations, come up with a product that may help us live longer, and charge us $350 a pill to get it. Really? All the donated millions and this crazy price? On the one hand, I feel like a fool having given them all this free donated money through the years when I could have invested in their company and maybe gotten a few dollars back in dividends. Now that I have cancer I almost feel cheated. On the other hand, I guess I need to feel lucky that first of all, I don't need the drugs yet, but beyond that, when I do need them there are options out there.
It is tough to be faced with a disease that will kill you with no treatment available. It is also tough to be faced treatment that leads to financial decisions whether to kill our family assets to live a little longer.
I'll cross that bridge when I come to it.

Monday, January 3, 2011

Seems the transfusion has finally kicked in. I don't know why it takes several days to start feeling the benefit, but that's the way it is. But doing pretty good right now.

Thursday, December 30, 2010

Here I am getting my 3 units. I was so sure my hematocrit would be lower than ever because I have been more tired, sleeping more. My norm has been 27 at transfusion. Today 28. So doc would say basically unchanged. I'll take that as good news.
It took them over an hour and several pokes to get the IV started today. An argument for getting a port.
So I will take this as good news. Leaving in less than two weeks for my road trip from Seattle to Tucson and San Diego, confident I'll do fine, and get back for my next transfusion Feb 11.

Sunday, December 26, 2010

Survived the holidays. Love my grand kids, but they sure can wear me out. Looking forward to the transfusion this week, the normal 3 units I suspect, and the little increase in energy.

Thursday, December 23, 2010

Yesterday hiked up tiger mountain. 3 miles up, 2000 ft. of elevation, took 1.5 hours, max heart rate 151. 45 minutes down. Kicked my butt. I used to do this with a heavy pack in under an hour. I get my transfusion next week, I suspect hematocrit is about 27, normal for me now at fill up.

Wednesday, December 8, 2010

So tired. went to bed about 9:30, slept right through Sue's getting up and having breakfast. Finally got up about 8:15. Yesterday Sue told me maybe I should get treatment started. The hope being that treatment will get me to where I'm not tired anymore, or at least AS tired, and also be transfusion independent. I'm reluctant. Call me irrational. It becomes very real if I have the port implanted and start chemo. And when I have seen chemo patients, they seem really sick. I want to avoid that. Chemo does not look survivable. I know it is, but I have recollection almost exclusively of those who did not. Meantime, my ongoing cold seems to be getting worse right now. Have not really been well since Nov 3. Going back in to my ears..
Hey, the rain has stopped and the sun came out. Almost full blue sky. Cheer up, Buckwheat.

Tuesday, November 30, 2010

After my Caribbean sailing vacation, I returned home and it was time to get another transfusion. The normal 3 units. I was actually only 5 weeks since my prior transfusion, due to schedule around vacation and the holidays.
My hematocrit had dropped only to 27 this time vs 26 last time. My t protein is gradually climbing. Two years ago it was 2.2, now at 4.2. A level where treatment is getting close. Also the transfusions are causing my iron levels to rise, which can be hard on the heart and liver.
He says even so, there is no compelling reason to start chemo yet, and will probably wait until after the Mexico trip in March. Probably the best I can hope for.