Oh crap, I just lost a long post, but I'll try to recreate it.
I've been trying to get a grip on my situation—the idea of moving elsewhere, whether or not to stay with Kaiser or go with a PPO (which would financially drain us but allow me to explore other treatments/facilities), trying to research new treatments/clinical trials, as my pain is increasing and it seems inevitable I'll be moving to third-line treatment soon. I've spent hours on the computer, reading scientific abstracts about drugs that may be years before approval or turn out to be complete duds. It's not just exhausting, it's depressing. Then the clinical trial nurse called and told me to stop taking my chemo drug (Tarceva). I thought it had to do with the CT scan I had on Monday, but it was the two-year anniversary of my enrollment in the Genentech study, and there was a question as to whether the study would continue to provide the drug or if it now reverted to a paid prescription. Tarceva is expensive. It's about $3300/month's supply, and I don't know how much of that I'd have to pay, but I'm guessing it's not $10. I'm guessing it's ALOT. The whole day passed without a call and my anxiety was intense. I'd had this discussion with the previous clinical trial nurse and she said Genentech would continue to provide the drug *free of charge* as long as I did well/my physician kept me on it. Apparently that wasn't in writing anywhere, or it didn't matter. Relief, the study was going to continue with the freebie, but WTF, even if it became prescription, Kaiser can't afford to give me a couple of pills until I can get to the freakin' pharmacy? Now I was depressed and irritated. Luckily I had to harvest zillions of ripe tomatoes, which distracted me.
This morning I watched a video on PBS.org called The Truth About Cancer. Excellent, if not actually optimistic. I was feeling a bit sorry for myself, thinking I should just accept that cancer's going to kill me in a matter of months and I need to make those "final" arrangements. I thought I'd go over to Leroy Siever's (newsman and friend of Ted Koppel) blog to see how he was doing. He's fought the most agressive and protracted battle on metastatic colon cancer that I've read about for almost three years. He's had all sorts of procedures—radio-frequency ablation, cryoablation, vertebrae replacement, chemo, radiation, conventional surgery, brain surgery…I saw the decline, but I was waiting for the post that signaled an upswing. I still had hope, because he soldiered on. Well, he died. On August 12. At least he read the last Harry Potter book, even if he won't see the last three films. Rest in peace, Leroy.
It's been a tearful morning. I began reading Leroy's blog soon after I was diagnosed, even before I started this blog (two years ago). I knew nothing about fighting "the war" or even how to express myself regarding the topic of "life during wartime". I know intellectually that no one lives forever, yet I can't help continue in my daily life as if I'll be around at Thanksgiving, and I don't know that I will. I can hope, but like many people in my life, I've become complacent and lax about time, simply because urgency is difficult to sustain over two years. I haven't been living as if each day, or week, might be my last. The hubby's definitely not focusing on that—his travels have increased and taken him farther away. He could be in Tierra del Fuego or the Canadian oil fields when I go to the next front (which is why we're supposed to move closer to family, but maybe he doesn't want to watch me go down). Communication is spotty in both areas. I worry that not only will he not be around when I need him most, but that he'll be beyond reach, and a whole day's flight away even if he is reached. I apologize for bitching about this constantly, but it's becoming an acute worry.
Wyoming made me want to marshall all my strength and resources for the fight ahead. I feel I need to train for it, because the medical team constantly mentions that I'm "not as strong as when (I) started". Although I feel better than when I started, chemo batters your body, and the stresses of living here (San Leandro) probably hasn't helped my frame of mind. So maybe moving to San Diego will be a healing experience, the way living in Alameda (when we still had two incomes) was during my first treatment. I'd be 85 miles from friends and family, but that's at least commuting distance. 20 miles would be more practical, but I can't think of anywhere in the area (San Bernardino-Riverside), except at elevations where I can't live, that nurtures my will to live. Is that all in my head? Travel is increasingly difficult, so the option of driving to get away isn't really an option (and hasn't been for about 10 years), especially not on a daily or even weekly basis. I can't afford to be depressed about where I'm living—I need to be uplifted by it. I doubt I'd be throwing pottery, because I wouldn't have a kiln. Anyway, we've been over this before. I just need to scope it out when I get down there, I guess. It certainly begs the question of how I managed to live there between 1994 and 1998. In 1998 I got a job in the mountains, which saved me from daily living in the pit, and I met the hubby, so I commuted on weekends to San Diego. All told, I survived 4 years with the help of a job in the mountains, air conditioning, Bruno, trips to Portland, OR in the summer, and commuting to Oceanside on weekends. Remove everything but the air conditioning, add in two cats, seeing friends and parents on weekends, pool, possibly dealing with familial stress….Hmmm. Doesn't sound uplifting.
Maybe we should consider a vacation house in Minnesota, where Mike's friends are. He wants to move there, and I wonder if he'd be home more if he felt like he had buddies to hang out with? Maybe I could go there for half the year.