Yesterday was our long day of tests and decisions at the KU Cancer Center. Normally, after all these visits, Mohamed and I are rather blasé about these days, but I'll have to admit that this time, after the full month's break in chemo, we were both a little apprehensive. We were up at the crack of 6 a.m. and out the door an hour later. It was still dark when we left, which meant that driving into the rising sun wasn't fun for Mohamed, especially in the morning KC rush hour traffic.
The first stop is drawing blood and putting in an IV, which I need for the part of the scans with "contrast." I had an unfamiliar phlebotomist, a woman named Ted. Her real name, she said, was Edwina, but she'd early chosen to go by Ted. She was efficient and chatty and said that I was "fun" and "a tough old bird." Fun--not so much these days; tough old bird, a phrase I've been known to apply to myself.
Next we descended to the basement, where I changed into hospital pants, which promptly fell down the first time I walked down the hall with them, removed my shoes and shirt, and began drinking the two large, cold cups of water. Rather quickly, I was called for the x-rays--19 of them in all from head to toe. The technician was impressed with the size of my titanium femur. Then there seemed to be a long wait for my turn in the CT scanner. Because of the heat the various machines in that part of the center generate, the temperature is kept very low. I always shiver, despite the warm blanket they give me. The scans went quickly, and shortly before 11 we were done.
We met our friend TJ at Stroud's, home of the world's best pan-fried chicken, to say nothing of their cinnamon rolls. The restaurant has been featured several times on the Food Network. For years, the only location was in North Kansas City--an old house mobbed on weekends. Some time ago, they opened a branch near the cancer center, and since my appetite was still good, I figured I should take advantage. TJ sings with and is marketing director for KC's gay chorus, the Heartland Men's Chorus. They're part of the T-Mobile commercial montage of "Take Me Out to the Ballgame," which runs right after the "God Bless America" seventh inning stretch during the World Series. Since no food is begun before the order is placed, we had a nice, long time to chat, and TJ is always an entertaining conversationalist.
At one o'clock we were back at the center, ready for our consultation. And the results were all good. Despite the month's respite, the primary tumor hadn't grown at all, not one millimeter. What a relief! We ruled out switching to another chemo treatment: why start all over again with no specific idea of the side effects of the new drug or of its efficacy? Dr. Van asked if we wanted to try another month without chemo, but both Mohamed and I had already decided that we weren't ready to push our luck, so last night, for the first time in a month, I swallowed two pills of Votrient. Hello, old friends. One of the immediate side effects is that Votrient raises blood pressure, and so for the past three years, I've been taking three anti-hypertension meds. We'll go with just two meds for the moment, but with daily monitoring and we'll go back to the center in a month, rather than the normal six weeks, to see how everything is going.
All in all, it was a great and comforting trip to KC. I crashed when I got home, but that's normal, and then watched the Royals demolish the Giants. Just for a little class, tonight the national anthem will be sung by one of the world's greatest mezzo-sopranos, Joyce DiDonato. Go Royals!
Wednesday, October 29, 2014
Wednesday, October 8, 2014
It's been 12 days since I stopped taking the chemo and three days since I came home from the hospital. I've been feeling much better--still some fatigue, but not nearly as much as before and generally able to function somewhat normally. Monday we went out to do some errands, and then in the afternoon had two sets of visitors, including Doug and Raylene, who brought a delicious pot roast and dinner rolls. My appetite has returned, and food tastes good for the first time in a long time.
Yesterday, a beautiful fall day with the leaves beginning to turn, we drove to KC to have a consultation with Dr. Van, the oncologist. We had already scheduled a series of tests--full skeletal x-ray, CT scans, etc.--for October 28, so we decided that I'll stay off the chemo till then. That means I should also be able to skip the three blood pressure meds. So with a full month with no Votrient, my body should have time to return to "normal." And then after the time off and the results of the tests, on the 28th we'll make the hard decision of what to do next: should I return to 400 mg of Votrient and just more carefully monitor what's going on? should I reduce the Votrient to one pill of 200 mg? (No one seems excited by that prospect.) should we switch out the Votrient for another medication (Sutent) of the same class of drugs unsure of what would the efficacy and the side effects of that decision? or should we try another class of chemotherapy that generally has fewer side effects but is also generally less efficacious? In the meantime, there are fewer pills, fewer naps, and a new obsession with the Beach Club sandwich from Jimmy John's. What the cancer cells are doing inside my body without their toxic enemies fighting back is, for the moment, an unanswered question.
Yesterday, a beautiful fall day with the leaves beginning to turn, we drove to KC to have a consultation with Dr. Van, the oncologist. We had already scheduled a series of tests--full skeletal x-ray, CT scans, etc.--for October 28, so we decided that I'll stay off the chemo till then. That means I should also be able to skip the three blood pressure meds. So with a full month with no Votrient, my body should have time to return to "normal." And then after the time off and the results of the tests, on the 28th we'll make the hard decision of what to do next: should I return to 400 mg of Votrient and just more carefully monitor what's going on? should I reduce the Votrient to one pill of 200 mg? (No one seems excited by that prospect.) should we switch out the Votrient for another medication (Sutent) of the same class of drugs unsure of what would the efficacy and the side effects of that decision? or should we try another class of chemotherapy that generally has fewer side effects but is also generally less efficacious? In the meantime, there are fewer pills, fewer naps, and a new obsession with the Beach Club sandwich from Jimmy John's. What the cancer cells are doing inside my body without their toxic enemies fighting back is, for the moment, an unanswered question.
Sunday, October 5, 2014
It's amazing how a relatively intelligent person--in this case, me--can be so dense about important matters. After endless complaining about lack of energy, by last Wednesday things had reached a turning point. I couldn't dress myself without resting between each item of clothing. I'd be thirsty, have a glass of water on the table in front of me, but not be able to summon the energy to bend forward and pick it up. I could talk only in a raspy whisper. Luckily, I wasn't alone, and Mohamed insisted that we go to the ER. I called the oncologist in KC, but we agreed that a trip to KU Med would be too much, so we went to the ER at Stormont-Vail, Topeka's largest hospital, where I began a three-day stay.
Saying the words 'stage 4 cancer' got me to the front of the triage line in the ER. Since I had had uncontrollable diarrhea for several days, the first test was to eliminate clostridium difficile (or C. diff), a dangerous infection that is common in some cancer patients. The tests for that were negative, which was good news indeed. I was suffering from acute kidney failure and severe hypotension (80/40 when I entered the hospital). Because of the diarrhea, the kidneys had nothing to process and had shut down. For the next three days, I was pumped full of various fluids. I kept thinking of the scene in Catch-22 with the soldier in white who has one bag of fluid pumped in, one drained out, and the two bags exchanged every several hours.
Once the diarrhea had stopped (I'd quit taking the chemo), the kidneys began to respond, and after a couple of days, they were functioning normally again. The blood pressure was a little slower to respond, but it's now back at normal levels. The Votrient raises the blood pressure so much--this an immediate effect over three years ago--that I've been taking three different anti-hypertensive meds to keep it under control. For the moment, I'm off both the chemo and the blood pressure meds. Tuesday we go to KU Med to consult with the oncologist and see what the next steps will be.
Wednesday was an extremely scary day. Even the normally unflappable Mohamed was alarmed. As always, he took good care of me, beginning with his insistence that we go immediately to the ER. The hospital experience was decent enough. The bed was too short ("it doesn't fit anyone 6' or taller," said one of the nurses). The food was passable when Mohamed wasn't bringing in nourishment from outside. Friday night, our friend Laura brought in lamb biryani for me, so at least I had something spicy, and my appetite seems to have improved, as has my energy level.
Saturday was frustrating as I waited all day for discharge, getting testier and testier as the day progressed with no sign of the doctor. Finally, around 6 p.m., I was leaving when I felt warm liquid running down my left arm and hand and saw blood spots trailing through the hospital lobby. Because I take an anti-coagulant every day (that's the morning shot to the stomach), the place where the IV port had been removed was bleeding. That taken care of, we headed home.
I'll blog again on Wednesday after our appointment in KC with Dr. Van. In the meantime, we're just monitoring things like blood pressure, but I'm feeling much better and actually have a little energy.
Saying the words 'stage 4 cancer' got me to the front of the triage line in the ER. Since I had had uncontrollable diarrhea for several days, the first test was to eliminate clostridium difficile (or C. diff), a dangerous infection that is common in some cancer patients. The tests for that were negative, which was good news indeed. I was suffering from acute kidney failure and severe hypotension (80/40 when I entered the hospital). Because of the diarrhea, the kidneys had nothing to process and had shut down. For the next three days, I was pumped full of various fluids. I kept thinking of the scene in Catch-22 with the soldier in white who has one bag of fluid pumped in, one drained out, and the two bags exchanged every several hours.
Once the diarrhea had stopped (I'd quit taking the chemo), the kidneys began to respond, and after a couple of days, they were functioning normally again. The blood pressure was a little slower to respond, but it's now back at normal levels. The Votrient raises the blood pressure so much--this an immediate effect over three years ago--that I've been taking three different anti-hypertensive meds to keep it under control. For the moment, I'm off both the chemo and the blood pressure meds. Tuesday we go to KU Med to consult with the oncologist and see what the next steps will be.
Wednesday was an extremely scary day. Even the normally unflappable Mohamed was alarmed. As always, he took good care of me, beginning with his insistence that we go immediately to the ER. The hospital experience was decent enough. The bed was too short ("it doesn't fit anyone 6' or taller," said one of the nurses). The food was passable when Mohamed wasn't bringing in nourishment from outside. Friday night, our friend Laura brought in lamb biryani for me, so at least I had something spicy, and my appetite seems to have improved, as has my energy level.
Saturday was frustrating as I waited all day for discharge, getting testier and testier as the day progressed with no sign of the doctor. Finally, around 6 p.m., I was leaving when I felt warm liquid running down my left arm and hand and saw blood spots trailing through the hospital lobby. Because I take an anti-coagulant every day (that's the morning shot to the stomach), the place where the IV port had been removed was bleeding. That taken care of, we headed home.
I'll blog again on Wednesday after our appointment in KC with Dr. Van. In the meantime, we're just monitoring things like blood pressure, but I'm feeling much better and actually have a little energy.
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