Merry Christmas! I hope that everyone is having a great holiday--full of good food and good company.
This is the first holiday season that I haven't sent out a single card or even a form letter to those old friends with whom I communicate only once a year. I just haven't had the energy to do it, even when I tell myself just to do two or three a day. My laziness certainly doesn't mean you're not in my thoughts, and I thank all those of you who have remembered me this year.
Today is day 5 of not taking the chemo. The break seems to be helping with the stomach problems but not with the fatigue. I still crash three times a day, my mind and body both suddenly shutting down completely.
I'm going to have a new test, an echocardiogram, on the 31st before having the regular series of tests on the 10th. What an exciting way to spend New Year's Eve day!
Best wishes for a peaceful and joyful holiday season.
Wednesday, December 25, 2013
Saturday, December 21, 2013
Yesterday was my once-every-six-weeks visit to the KU Cancer Center. This time there would just be blood tests, the expensive bone-strengthening shot, and a consultation, and the first appointment wasn't until 1 p.m.
Like the Friday before, the morning began with lots of black ice on the roads, slide-offs and rollovers, but by the time we were ready to leave, the roads were dry. The best pan-fried chicken in America is at a restaurant called Stroud's (the Food Network concurs), which has an old farm house north of the city but has opened a branch close to the Cancer Center. This restaurant is open only on Fridays and weekends, so I thought it was a perfect time to go. All of our KC friends were busy, so it was just going to be the two of us--and half the population of KC. There wasn't parking within a half-mile of the restaurant, so after four trips through the parking lot, we gave up and went to First Watch. We parked at the Center and then walked the block and a half to the restaurant. It was so cold and windy that I didn't think I was going to make it. Once inside, I couldn't stop shaking from the cold. Even a bowl of tomato basil soup didn't help much. And then we had to face the return trip.
First came the drawing of the blood. My nemesis Marci was there, but thankfully I got a much more efficient phlebotomist, so that took about five minutes. There was some confusion as there was a Mr. Falconer there, and we both kept getting up when our similar names were called. Although the appointment was with Dr. Van, who is always very late, Jennifer, the physician assistant, saw us first and gathered all the information, and then Dr. Van promptly appeared. I had lost seven pounds since the last visit, though my weight sort of fluctuates and at the last visit was the highest it had been in some time. The blood work revealed nothing unusual. Most of the discussion focused on "quality of life" issues, since the last month hasn't been a lot of fun, and my energy level has been particularly low. (So far, I haven't written a single holiday letter or card.) Dr. Van's suggestion was that I take a serious break of four to six weeks from the chemo. Any break scares Mohamed, who suggested a one-week break. But I think we need something more serious, so we compromised on three weeks. Dr. Van said that there was no risk. I'll go back in three weeks rather than six and have all the scans.
Once I finish this blog, I'll take a handful of pills, but the Votrient won't be among them.
I stayed awake for the trip home, but then completely crashed for two hours. Even after I woke up and had something to eat, I wasn't particularly coherent nor felt very good. I watched "The Big Heat" and then at 10:30 fell asleep for the next eight hours. And now begins Day One sans chemo.
Like the Friday before, the morning began with lots of black ice on the roads, slide-offs and rollovers, but by the time we were ready to leave, the roads were dry. The best pan-fried chicken in America is at a restaurant called Stroud's (the Food Network concurs), which has an old farm house north of the city but has opened a branch close to the Cancer Center. This restaurant is open only on Fridays and weekends, so I thought it was a perfect time to go. All of our KC friends were busy, so it was just going to be the two of us--and half the population of KC. There wasn't parking within a half-mile of the restaurant, so after four trips through the parking lot, we gave up and went to First Watch. We parked at the Center and then walked the block and a half to the restaurant. It was so cold and windy that I didn't think I was going to make it. Once inside, I couldn't stop shaking from the cold. Even a bowl of tomato basil soup didn't help much. And then we had to face the return trip.
First came the drawing of the blood. My nemesis Marci was there, but thankfully I got a much more efficient phlebotomist, so that took about five minutes. There was some confusion as there was a Mr. Falconer there, and we both kept getting up when our similar names were called. Although the appointment was with Dr. Van, who is always very late, Jennifer, the physician assistant, saw us first and gathered all the information, and then Dr. Van promptly appeared. I had lost seven pounds since the last visit, though my weight sort of fluctuates and at the last visit was the highest it had been in some time. The blood work revealed nothing unusual. Most of the discussion focused on "quality of life" issues, since the last month hasn't been a lot of fun, and my energy level has been particularly low. (So far, I haven't written a single holiday letter or card.) Dr. Van's suggestion was that I take a serious break of four to six weeks from the chemo. Any break scares Mohamed, who suggested a one-week break. But I think we need something more serious, so we compromised on three weeks. Dr. Van said that there was no risk. I'll go back in three weeks rather than six and have all the scans.
Once I finish this blog, I'll take a handful of pills, but the Votrient won't be among them.
I stayed awake for the trip home, but then completely crashed for two hours. Even after I woke up and had something to eat, I wasn't particularly coherent nor felt very good. I watched "The Big Heat" and then at 10:30 fell asleep for the next eight hours. And now begins Day One sans chemo.
Monday, December 16, 2013
It's been a long time since I've blogged. I've thought about it many times, but then somehow I don't have the energy. Plus, the entry would probably be mostly complaints with nothing exciting to report. (I didn't leave the house from Saturday night to Saturday night.)
Worse, the complaints are nothing new--the same old problems, just exacerbated. The most difficult is the fatigue. I have three good hours in the morning, and then I crash. I used to sleep for about an hour; now it's more like 90 minutes or two hours. Then I struggle awake for lunch and another couple of sentient hours before I crash again for two hours. That used to be it for the crashes, but now I experience another one at 5:45.
My appetite is generally pretty good, but nothing stays inside me very long. The trips to the bathroom are as frequent as ever.
I've had stage 4 kidney cancer for over three years. The most optimistic prognosis you can find is a year or less, so my body has been battling overtime for a long time now. Meanwhile, every morning for 2½ years, I've ingested toxic chemicals--targeted chemo, but toxic none-the-less. So if my body is a little exhausted these days, maybe it's entitled to a brief retreat.
We've generally had a mild winter so far--some cold weather, a little snow, but nothing severe. I hate the dark and cold and always look forward to the winter solstice. Even though there will be many more days of early darkness, at least the darkest are behind us.
Friday is my once-every-three-months series of tests at the KU Cancer Center. I'll publish the results on Saturday.
Worse, the complaints are nothing new--the same old problems, just exacerbated. The most difficult is the fatigue. I have three good hours in the morning, and then I crash. I used to sleep for about an hour; now it's more like 90 minutes or two hours. Then I struggle awake for lunch and another couple of sentient hours before I crash again for two hours. That used to be it for the crashes, but now I experience another one at 5:45.
My appetite is generally pretty good, but nothing stays inside me very long. The trips to the bathroom are as frequent as ever.
I've had stage 4 kidney cancer for over three years. The most optimistic prognosis you can find is a year or less, so my body has been battling overtime for a long time now. Meanwhile, every morning for 2½ years, I've ingested toxic chemicals--targeted chemo, but toxic none-the-less. So if my body is a little exhausted these days, maybe it's entitled to a brief retreat.
We've generally had a mild winter so far--some cold weather, a little snow, but nothing severe. I hate the dark and cold and always look forward to the winter solstice. Even though there will be many more days of early darkness, at least the darkest are behind us.
Friday is my once-every-three-months series of tests at the KU Cancer Center. I'll publish the results on Saturday.
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