Then:

What had happened so far, as important as it was, addressed the metastasized cancer.  Now it was time to focus on the primary kidney cancer.  The renal oncologist was Dr. Vanveldhuizen (or Dr. Van, as he's called to avoid too many different pronunciations of his name), a soft-spoken and earnest physician.  His office is at the KU Med Center cancer center a few blocks south of the main KU Med campus.  Dr. Van explains everything in detail--first to me, then to Mohamed.  He is infinitely patient if, despite his clear explanations, I've gotten focused on one detail and lost track of what followed.  Although many friends were still urging that I go to Mayo for a second opinion, everything he recommended was exactly what I was finding online and in a book he gave me, "100 Questions and Answers about Kindey Cancer."  He inspired confidence, and I felt good about continuing with him.  Of course, one consequence of his painstaking attention is that he always runs late.  Mohamed and I will be ushered into one of four small rooms to wait for him.  Occasionally, he sticks his head in to say hello, shake hands (he has very cold hands), and assure us that he'll be there soon, and then another 45 minutes pass before he finally gets to us.  Since by then I've usually had several tests, I'm often tired and a little grumpy. 

A cancer center sounds as if it would be the most depressing place imaginable.  Instead, the center in KC (as well as the one in Topeka where I underwent radiation) is brightly lit, spacious, and friendly.  Dr. Van's physician assistant, Dr. Heins, is warm and funny, and she too inspires an easy confidence.  We joke with the nurse and with the scheduler.  When Ilka, the scheduler, had a baby, we all waited for word and later looked at pictures of Noah, the new baby.  This may seem irrelevant to the larger story, but it's not: going to the cancer center can't exactly be an experience to look forward to, but at least it's not an experience to dread; it's not in and of itself depressing--and that makes an enormous difference.

I suppose the question oncologists must dread most is "what's the prognosis?"  But it's question I'm sure every patient asks.  Online and in the kidney cancer book, the answer for stage four kidney cancer was 10-11 months.  Dr. Van answered quietly when I asked, "Nine months to a year."  Although I wasn't diagnosed till nine months ago, my cancer had metastasized at least sixteen months ago.  I don't feel as if I'm living on borrowed time; chemically extended time, though, is ok with me.

The chemotherapy we decided on is Votrient, which I take once a day orally at a cost of $6,000/month.  I feel very lucky to be able to take it orally rather than having to go to a facility for a drip.  The most immediate side effect was raising of my blood pressure, so I now take three separate medicines to keep the blood pressure down.  Those meds plus reducing the dose of Votrient from 800 to 600 mg. a day seem to have solved that problem.  It didn't cause my hair to fall out, but the hair did turn gray.  I try to convince myself that it looks "distinguished"--the Anderson Cooper look maybe.  More significantly, my body's fighting the cancer, the chemo, and the blood pressure meds cause enormous bouts of fatigue.  It's not as if I'd like to take a nap; it's two or three times a day my mind and body just shut down.  And I, like most patients on Votrient, have really debilitating diarrhea.  And it's not just exhausting, but it's potentially embarrassing.  Before I go out, I make sure to have taken Imodium--and then I cross my fingers and hope.

I had 12 sessions of radiation here in Topeka for the scapula and then later 11 sessions on the femur.  I was surprised at how quick the treatments and how few the side effects were.  The ones on the scapula especially were very effective in reducing pain.

Once a month I go to the cancer center in KC to see Dr. Van or Dr. Heins.  On two of the monthly visits I have blood work (so far, so good) and a consultation.  I also get a bone-strengthening shot.  One shot costs $11,187.  One shot!  Every three months, in addition to the blood work and shot, I go through the whole battery of tests: full-body x-ray to see whether there are more attacks on the bone and CT scans (which involve drinking two bottles of barium, euphemistically labeled "Creamy Vanilla Smoothie," a ploy that might work if you didn't actually have to taste the stuff).  The next full screening is February 3; needless-to-say, I'm apprehensive.

I also get an anti-coagulant shot at home.  For the first few months, Mohamed gave me these subcutaneous shots twice a day; now it's down to a stronger shot just once a day.  I don't mind shots, and Mohamed gives them easily.  (Dr. Van's idea of humor: when I expressed relief at having just one shot a day, even if it was 120 mg. rather than two at 80 mg., Dr. Van said, "Yes, but the needle is much bigger."  He chuckled at his own joke; it took me a second or two to realize that it was a joke.)  The cost for this is over $3,000/month.

The drugs alone cost $20,000 each month.  Medicare helps enormously (at this rate, I move through the "donut hole" with remarkable speed).  And I have supplemental insurance, but still my share is significant, and now that the new year has begun I'm back in phase one of Medicare coverage.  What if this had struck before I was 65?  Or what about those who simply don't have the money for out-of-pocket expenses?  The inanity of our current system, the waste of money on the constant TV ads by Big Pharma, and the superficiality of the debates about health care--all are infuriating.