Yesterday was another day--they occur once every three months--of the full battery of tests at the KU Cancer Center. The first appointment was at 9:15, so we didn't have to get up too early, a relative term since I tend to wake up before 6, and during vacation and on weekends, Mohamed is likely to sleep until 10. Since I was having CT scans, I couldn't eat or drink anything but water until after the scans. A morning without coffee is like a beautiful woman with only one eye (to paraphrase Chateaubriand, who was talking about a day without wine). Since it always takes exactly 75 minutes to get to the center, no matter the traffic, road construction, or time of day, we left at 8 and got there precisely at 9:15.
First comes the blood work. The waiting room was packed, but the wait wasn't long. Marci, a cheerful sort, took the blood. She was efficient, but kept dropping things on the floor, which seemed a little worrisome. Since a scan was scheduled, she put in a port to draw the three vials of blood. That done, we went to the basement where x-rays and CT scans are done. The waiting room there wasn't crowded, but they seemed already to be running late. I was finally called to sit on one of three chairs in a hallway and drink my two large glasses of what now seems to be pure water, a big improvement on the kind of drinks they used to serve before scans. Whatever is in the water (it definitely isn't pure) causes chills, so they gave me a warm blanket, which I kept wrapped around me while I waited. The tech said it would be 30 or 40 minutes, but it was well over an hour before I was called--and there was no magazine dated later than last October. (The fall football issue of Sports Illustrated didn't even mentione Notre Dame, and the Sooners were optimistically picked at #5.) Several people were called for scans and x-rays before me, though I wasn't quite sure where they were coming from. By this time, I was exhausted, and I think I nodded off a couple of times. The scans themselves don't like long--first they do them without contrast, and then they inject a fluid that makes you warm and your mouth taste metallic into the port and run them again. The machine says in a booming voice, "Breathe in. Hold your breath. Breathe." And there are two happy faces, one green with its mouth open; another yellow with its mouth shut and its cheeks puffed out for further guidance.
Then it was time for my bone-strengthening shot. The third floor is devoted to chemo treatments; many people must spend hours there. All I needed was a shot, but they too were running late. They took my vitals (all normal) and finally the nurse arrived with the needle. Because of the volume of fluid they inject, the nurses always want to do it my stomach, but since I started taking anti-coagulant shots every morning in my stomach about 18 months ago, I don't need another injection there, so they do it in my arm. I can't say it's painless exactly, but it's not too bad.
By this time it was noon. We had hoped to call some friends in KC to see if anyone was free for lunch, but the morning had taken much longer than anticipated, and I was tired, so, after sneaking up to the roof for a smoke (the Cancer Center, like the Med Center, is a smoke-free campus; at the Med Center, you can always see a whole line of nurses, patients, and family who have walked across State Line Road into Missouri and are puffing away), we just went to the cafeteria for lunch. And then at 1:20, I had my vitals taken again (I'd lost 7# since three months ago, not exactly a surprise) and then had my consultation with Dr. Vanveldhuizen. Well, not really with him yet, because again I saw still another Fellow to go over the results. This one was Indian, and though he was quite well informed, I sometimes had difficulty understanding him. When his first question was whether I had seen the surgeon, Dr. Holzbeierlein, whom we had seen about three months ago, I knew the news wasn't going to be completely good.
The primary tumor in the kidney had grown another 20+% to about 5 cm. (approximately two inches). So once more on the table was the discussion about changing to a different chemo drug and about having surgery. On the plus side, however, the various tumors in my bones and organs had not grown. The Votrient seems to have lost some of its efficacy against the kidney tumor, but not with the others. Dr. Van arrived, and we went over the options. Because switching chemotherapies (probably to Sutent, the other most current drug for kidney cancer) involves so many unknowns--would it be more effective both against the kidney tumors and the others? what would the side effects be and how well would my body tolerate the switch?), we decided to continue with the wait and watch option. The same is true of surgery, which wouldn't prolong life, but might make the end less difficult, but which also had its own dangers. I had been pleased when we had talked to Dr. Holzbeierlein that he didn't strongly advocate surgery, as I thought a surgeon might. On the Votrient, I've lived twice as long as the initial prognosis and am still doing well, so I hate to abandon it.
As far as the side effects go, Dr. Van prescribed a medicine that is supposed to help increase appetite. (Kansas, needless-to-say, doesn't have medical marijuana.) Of the anti-diarrheal medications, I had ruled out Lomotil, which didn't seem more effective than Imodium or tincture of opium, which seemed to increase the nausea, and which dried my body out so much that even my eyes were scratchy. After I ran out of the tincture, I took Lomotil for a couple of days before returning to Imodium, which has been effective for the last two days. Now that I've tried Lomotil, Dr. Van assured me that the insurance would pay for the tincture of opium, so I have a prescription for that. I told the Fellow that the prescription needed to be for a certain number of milliliters, not for a "bottle," which was too imprecise for the pharmacy. A normal bottle is 100 mL, and it wasn't until later that I noticed he had written it for 473 mL--a strange number, but also half a liter, which seems excessive. I'm not sure what Walgreens is going to make of that.
Both Mohamed and I took the news calmly. I don't think either of us was surprised by the tumor's growth, given my lack of energy the last few weeks. I'll add one more pill (for my appetite) to my plastic box full of pill bottles. Mohamed at the wheel, I promptly fell asleep. One moment I was watching KC disappear in the rear view mirror, the next we were entering Topeka. And then I slept another 90 minutes once we got home. For the next few hours, I felt pretty energetic and had a decent appetite for dinner, but at 10 o'clock, ready to enjoy "Real Time with Bill Maher," I couldn't stay awake any longer. I managed to summon my strength to record it, and now it's time for "Up with Chris Hayes," so two hours of that, followed by an hour of "Real Time" should give me my political fix for this morning. I slept well, and I've taken my dozen pills for the morning. Once Mohamed awakes, I'll get another shot in my tummy. And, an hour having passed since I took the Votrient, now I can have something to eat--a bowl of cereal and a croissant are waiting for me in the kitchen.
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