Yesterday (Monday) was a long day with a trip to the Med Center in KC followed by radiation in Topeka, but everything went smoothly without any long waits. We got to the cancer center on time, and within ten minutes, I was called in for the blood draw. Marci looked on as one of my favorite phlebotomists took the blood. Another short wait, and we were called for the consultation with Jennifer, the P.A. The blood work looked good. We found out where Dr. Van is going--to a well-established KC hospital--but there was little consideration of our following him there. We decided that we will return to KU Med one more time for blood work, a CT scan, and a consultation with Dr. Hashmi. After that, I'll be treated by Dr. Hashmi here in Topeka. Since he works at the cancer center in KC only one day a week, it seemed more logical and certainly more convenient to have tests here and to see him on one of the four days a week he works in Topeka.
Dr. Van came in, and we gave both him and Jennifer gifts, tokens of appreciation for all that they have done. It's been a source of great relief to have an oncologist whom we trust and who has prescribed remarkably effective treatment. Dr. Van is normally the least demonstrative of people, but the gift managed to elicit his choking up briefly.
We were hoping to have lunch in KC with a friend or two, but once more, our friends were thoughtless enough actually to have jobs that required them to be at working during normal working hours (or to wait for a no-show plumber). So we drove back to Topeka and had lunch here. I had a pulled pork sandwich Elvis-style (with coleslaw and fried pickles). There's nothing like a balanced meal followed by a cigarette to represent healthful nutrition.
Although we were early for our appointment at the cancer center here, we got in with only a short wait. In the waiting room, there was a woman waiting for one of 23 radiation treatments for lung cancer. Her husband assured us that they had nothing to worry about as they had two churches and a son who is a pastor praying for them. I kept my mouth shut. CNN was playing on the TV, and the husband opined that all we needed to do was bomb the crap out of ISIS and all would be well. I kept my mouth shut again.
Then I had treatment number 6 with four more to go, including one later this morning. And we had a very brief consultation with Dr. Green. I'll have a treatment tomorrow, one on Friday (followed by seeing Dr. Green again, since he'll be out of town next Monday), and then a final zap next Monday. So far, the radiation hasn't had any bad effects--no nausea or difficulty swallowing. I hope that continues through Thanksgiving.
We were home by four, and I finally got my first crash of the day. Blissful oblivion.
Tuesday, November 24, 2015
Saturday, November 21, 2015
halfway finished
For the past five days, Mohamed and I have left home at 11 and headed to the cancer center here in Topeka. Twenty minutes later we arrive, walk past the registration desk, and take a seat in a small room to wait for the radiation. I'm led inside by one of the three techs who were there four years ago. After removing my shirt, I climb onto the table and all the marked x's on my body are properly aligned. The techs leave the room, I stare at the twinkling stars on the ceiling, and the machine begins to whirr. One of the three arms takes x-rays (a free extra dose of radiation), one arm zaps me, and the third records what's going on. As accurately as I can count, there are four doses of radiation: three seconds, twelve seconds, and then after the machine moves to the other side, and two more of three and twelve seconds each. And then it's over for another day.
So far, there haven't been any serious side effects. Although I'm getting only 30 seconds of radiation, the treatment does seem to take a little more out of me than it did four years ago, but perhaps I'm just older and less resilient or the cancer has weakened my resistance or I'm just misremembering. At any rate, I feel a bit more fatigued than usual, but there's usually enough energy to have lunch out or at least pick up something to take home.
On Monday, we'll have the treatment here later in the day because we're going to see Dr. Van at the KU Med Center that morning. I'll just have the blood work and then we'll discuss what happens next--whether we'll continue with Dr. Van, though he'll no longer be at the Med Center, or whether we'll transfer treatment to Topeka. We bought Dr. Van and Jennifer, the P.A., gifts to show our appreciation for all that they've done for us.
After the consultation and perhaps lunch in KC, we'll head back to Topeka for 3 p.m. radiation and then a review of what's going on with Dr. Green, the radiologist here. The treatments continue on their regular schedule Tuesday and Wednesday; there's a break for Thanksgiving, of course, and then the last two will be the following Friday and Monday.
On other fronts, I see that our horrible governor, Sam Brownback, has the highest unfavorable and lowest favorable ratings of any governor in the country. (Bobby Jindal is next on the least liked list.)
And in my Washburn inbox this morning was a note from a student teacher from Iowa State from my junior or senior year in high school inquiring whether I was the same Howard Faulkner who was the "finest social science student" he ever had. Whatever made him think of me these 50+ years later? He's now a scout for the Los Angeles Dodgers according to Google.
So far, there haven't been any serious side effects. Although I'm getting only 30 seconds of radiation, the treatment does seem to take a little more out of me than it did four years ago, but perhaps I'm just older and less resilient or the cancer has weakened my resistance or I'm just misremembering. At any rate, I feel a bit more fatigued than usual, but there's usually enough energy to have lunch out or at least pick up something to take home.
On Monday, we'll have the treatment here later in the day because we're going to see Dr. Van at the KU Med Center that morning. I'll just have the blood work and then we'll discuss what happens next--whether we'll continue with Dr. Van, though he'll no longer be at the Med Center, or whether we'll transfer treatment to Topeka. We bought Dr. Van and Jennifer, the P.A., gifts to show our appreciation for all that they've done for us.
After the consultation and perhaps lunch in KC, we'll head back to Topeka for 3 p.m. radiation and then a review of what's going on with Dr. Green, the radiologist here. The treatments continue on their regular schedule Tuesday and Wednesday; there's a break for Thanksgiving, of course, and then the last two will be the following Friday and Monday.
On other fronts, I see that our horrible governor, Sam Brownback, has the highest unfavorable and lowest favorable ratings of any governor in the country. (Bobby Jindal is next on the least liked list.)
And in my Washburn inbox this morning was a note from a student teacher from Iowa State from my junior or senior year in high school inquiring whether I was the same Howard Faulkner who was the "finest social science student" he ever had. Whatever made him think of me these 50+ years later? He's now a scout for the Los Angeles Dodgers according to Google.
Tuesday, November 17, 2015
scrape, scrape zap, zap
Yesterday started with a trip to the dentist for the regular, semi-annual cleaning. On the way, the phone rang from the local cancer center asking whether I wanted to start radiation that afternoon or wait until today (Tuesday). I chose to begin immediately and was relieved that the center was so prompt in getting the treatments started.
Mohamed and I had simultaneous appointments at the dentist, the same one who asked 4½ years ago whether we even needed to make another appointment. The most exciting event of the cleaning was that there is now a new flavor for polishing: chocolate. Adventurous sort that I am, I decided to try it (I'm not sure that was exactly on my bucket list, but what the hell). It tasted rather like brownie batter. And we did make an appointment for six months in the future without any questioning.
There was time for an hour-long nap before heading out again to the cancer center. I got right in, took off my shirt, and lay down on the "bed." They took further CT scans just to make sure the targets were accurate and made more black marks on my chest, stomach, and sides. Looking at the ceiling, I remembered from the previous sessions that there are twinkling lights meant to look like stars and distract from the procedure. And then there were four zaps, and I was done. We've scheduled the remaining nine sessions for 11:30 a.m. Monday through Friday so that I'll be finished with the treatments the Monday after Thanksgiving.
Next Monday, we'll change the time so that I can have a morning meeting with Dr. Van at KU Med. It's then that we'll decide whether he'll continue in charge of my case or whether we'll shift to Dr. Hashmi and have consultations, examinations, and treatment here in Topeka.
I was exhausted for the rest of the afternoon and evening, I assume from the disruption of my regular daily crashes rather than from one brief treatment.
Mohamed and I had simultaneous appointments at the dentist, the same one who asked 4½ years ago whether we even needed to make another appointment. The most exciting event of the cleaning was that there is now a new flavor for polishing: chocolate. Adventurous sort that I am, I decided to try it (I'm not sure that was exactly on my bucket list, but what the hell). It tasted rather like brownie batter. And we did make an appointment for six months in the future without any questioning.
There was time for an hour-long nap before heading out again to the cancer center. I got right in, took off my shirt, and lay down on the "bed." They took further CT scans just to make sure the targets were accurate and made more black marks on my chest, stomach, and sides. Looking at the ceiling, I remembered from the previous sessions that there are twinkling lights meant to look like stars and distract from the procedure. And then there were four zaps, and I was done. We've scheduled the remaining nine sessions for 11:30 a.m. Monday through Friday so that I'll be finished with the treatments the Monday after Thanksgiving.
Next Monday, we'll change the time so that I can have a morning meeting with Dr. Van at KU Med. It's then that we'll decide whether he'll continue in charge of my case or whether we'll shift to Dr. Hashmi and have consultations, examinations, and treatment here in Topeka.
I was exhausted for the rest of the afternoon and evening, I assume from the disruption of my regular daily crashes rather than from one brief treatment.
Saturday, November 14, 2015
the next steps
Friday at 1 p.m. we went back to the cancer center here in Topeka where I had the radiation on my shoulder and hip over four years ago. It's a modern building with a spacious three-story atrium (with a grand piano) and an adjacent library for cancer support groups.
We may not be the oddest of odd couples, but people do seem to remember us, and we were greeted as if we were old friends. Dr. Green, the same radiologist we had before, did the consultation. We're going to do ten sessions of radiation, including T4 and T9, the two vertebrae that border the four with the tumor. The side effects of the radiation, he said, would be the usual redness and fatigue, but also, because the esophagus runs parallel with the spine, some difficulty in swallowing, especially after the treatments have concluded. He said not to worry about this as the problem would resolve itself.
To pinpoint the precise areas of radiation, I underwent another CT scan and am now covered with markings in ink to delineate the focus. (The last time, they asked me whether I minded a number of very small tattoos to serve the same function; I said that I did.) Like last time, after all the waiting, once things begin, they are going to move quickly. I'll begin the ten daily sessions on either Monday afternoon or Tuesday.
There is some damage to vertebra T6, but Dr. Green said that they didn't do prophylactic action (i.e., opening me to put cement in the vertebra) unless there was more serious damage. I'm to notify them if the pain in that area becomes more pronounced. That was a relief as one of my worries was that the tumor was eating away at the vertebrae the way the tumor in my leg had on my femur.
We also asked Dr. Green about Dr. Hashmi, the oncologist who works four days a week in Topeka and one day at KU Med. He is the one who is taking at least some of Dr. Van's patients, including me. Dr. Green responded immediately that Dr. Hashmi was "wonderful" and loved by all his patients. He twice described Dr. Hashmi as 'articulate.' The choice, he said, was a "no-brainer": go with Dr. Hashmi and be treated here in Topeka.
I'll blog more frequently now that changes are underway.
We may not be the oddest of odd couples, but people do seem to remember us, and we were greeted as if we were old friends. Dr. Green, the same radiologist we had before, did the consultation. We're going to do ten sessions of radiation, including T4 and T9, the two vertebrae that border the four with the tumor. The side effects of the radiation, he said, would be the usual redness and fatigue, but also, because the esophagus runs parallel with the spine, some difficulty in swallowing, especially after the treatments have concluded. He said not to worry about this as the problem would resolve itself.
To pinpoint the precise areas of radiation, I underwent another CT scan and am now covered with markings in ink to delineate the focus. (The last time, they asked me whether I minded a number of very small tattoos to serve the same function; I said that I did.) Like last time, after all the waiting, once things begin, they are going to move quickly. I'll begin the ten daily sessions on either Monday afternoon or Tuesday.
There is some damage to vertebra T6, but Dr. Green said that they didn't do prophylactic action (i.e., opening me to put cement in the vertebra) unless there was more serious damage. I'm to notify them if the pain in that area becomes more pronounced. That was a relief as one of my worries was that the tumor was eating away at the vertebrae the way the tumor in my leg had on my femur.
We also asked Dr. Green about Dr. Hashmi, the oncologist who works four days a week in Topeka and one day at KU Med. He is the one who is taking at least some of Dr. Van's patients, including me. Dr. Green responded immediately that Dr. Hashmi was "wonderful" and loved by all his patients. He twice described Dr. Hashmi as 'articulate.' The choice, he said, was a "no-brainer": go with Dr. Hashmi and be treated here in Topeka.
I'll blog more frequently now that changes are underway.
Tuesday, November 10, 2015
Update--part deux
When Jennifer, the P.A., called at 4 on Friday, she said that it would probably take some time to arrange the scheduling of my first appointment with the radiologist here in Topeka, especially since it was so late in the day before the weekend. That seemed to portend even more uneasy waiting. But yesterday (Monday) morning at 11, the facility here called and scheduled my first appointment for this Friday. I'll have the treatments at the same place where I had the earlier radiation. The scheduler said to allow an hour for the appointment, which should mean that it's more than just a consultation. I doubt that I'll actually have the first treatment on Friday, but last time, they had to make molds of my leg/hip and my shoulder areas to target the exact places for radition, so perhaps that will be done on Friday if it's necessary, and we can begin the actual radiation next week. The area on my back near the tumor aches, so I'm eager (and anxious) to begin the sessions.
Happily, too, the same kindly, older, Jewish radiologist whom we liked a lot the previous time is still working and will be in charge of the procedure. (Extra credit: spot the unapologetic stereotyping adjective in the previous sentence.)
It's a great relief to have the first meeting actually scheduled and not have to undergo the uncertainty of waiting with decisions about timing out of our control.
Happily, too, the same kindly, older, Jewish radiologist whom we liked a lot the previous time is still working and will be in charge of the procedure. (Extra credit: spot the unapologetic stereotyping adjective in the previous sentence.)
It's a great relief to have the first meeting actually scheduled and not have to undergo the uncertainty of waiting with decisions about timing out of our control.
Friday, November 6, 2015
Update
The MRI results finally arrived at KU Med and were analyzed. There is a tumor on four vertebrae--T5 through T8. I'll undergo radiation treatment at the same Topeka facility that I used in 2011 for the radiation on the scapula and on the femur and hip. Although this isn't great news, it's a relief at least to have this stage in the waiting over. Now we'll wait to arrange the radiation. The last time, there were 10 sessions on the scapula and 11 on the femur. There weren't any bad side effects from the treatment, and we liked the doctor who was in charge.
Still waiting
And I hate to wait. I haven't posted anything this week after the MRI because I keep thinking that any minute (or hour or day) I'll get news. So far, though, nothing.
I had the MRI Monday morning at Stormont-Vail, a Topeka hospital. It went smoothly. Unlike at KU Med, here you're allowed headsets to minimize the constant banging of the MRI machine. I chose an RnB station, but I could barely hear the music over all the racket. You're also given a squeeze ball in case you panic, but I was so far from panicking that I think I actually fell asleep for a few minutes. I was then to call to Med Center on Wednesday to set up whatever comes next. After navigating the menu, I left a voice mail for Dr. Van's patient care manager, not my favorite person to deal with at the center. She called back later to say that they didn't have the results, and if they didn't have them by Friday, she'd call Stormont-Vail. I insisted several times that she call that day, but she just kept repeating that she'd give me a "shout out" when the results came in. When I heard nothing yesterday (Thursday), I emailed Jennifer, the Physician Assistant who works with Dr. Van and whom we like a lot. I've found that emails are more effective than phone tag. She wrote back that she'd have the assistant check out why there were no results yet and get back to me. It's now 8:45 on Friday morning, and I've heard nothing. Should I be the squeaky wheel yet again?
I realize that the branch of the Med Center that I go to is devoted solely to cancer patients. Everyone with whom the doctors and staff deal has cancer, so in some ways, it must seem to them as the norm. From the other side, however, the long waits (it was three weeks between the initial finding of growth in the tumor on the spine and the MRI) can be very frustrating. Perhaps the MRI will reveal that the tumor's increase in size is insignificant, but even if I know today, it'll will have been a month before there can be a consultation to decide what to do next, if action is called for.
Mohamed and I have often said that the hardest part of the last 4½ years was the month between April 13, 2011 when the doctor in Topeka who had misdiagnosed me for six months (first, a torn rotator cuff, then bursitis) called to say it was cancer and the beginning of treatment. We were in a kind of limbo, not knowing who was going to do what where and when. A month of inaction seemed like a distant nightmare, but even if I hear something today, it'll be a month between the news that the spinal tumor is growing and any possible action.
Thanks to all of those of you who have texted or emailed inquiring about results. I'll post an update as soon as I do know something. Meanwhile, my fingers are crossed (except when typing) that the results are good and the worry has been for nothing.
On other fronts, we had more Halloween trick-or-treaters than for at least twenty years. And best of all, they were all very cute kids in costumes of all types--not a teen-ager among them. Of course, the fact that we ran out of candy by 8 o'clock (I was convinced that Mohamed had bought too much) might account for the lack of older kids.
And, of course, joy reigns supreme in this area after the great and often nail-biting World Series. Mohamed may, however, be grateful that baseball is over till the spring.
I had the MRI Monday morning at Stormont-Vail, a Topeka hospital. It went smoothly. Unlike at KU Med, here you're allowed headsets to minimize the constant banging of the MRI machine. I chose an RnB station, but I could barely hear the music over all the racket. You're also given a squeeze ball in case you panic, but I was so far from panicking that I think I actually fell asleep for a few minutes. I was then to call to Med Center on Wednesday to set up whatever comes next. After navigating the menu, I left a voice mail for Dr. Van's patient care manager, not my favorite person to deal with at the center. She called back later to say that they didn't have the results, and if they didn't have them by Friday, she'd call Stormont-Vail. I insisted several times that she call that day, but she just kept repeating that she'd give me a "shout out" when the results came in. When I heard nothing yesterday (Thursday), I emailed Jennifer, the Physician Assistant who works with Dr. Van and whom we like a lot. I've found that emails are more effective than phone tag. She wrote back that she'd have the assistant check out why there were no results yet and get back to me. It's now 8:45 on Friday morning, and I've heard nothing. Should I be the squeaky wheel yet again?
I realize that the branch of the Med Center that I go to is devoted solely to cancer patients. Everyone with whom the doctors and staff deal has cancer, so in some ways, it must seem to them as the norm. From the other side, however, the long waits (it was three weeks between the initial finding of growth in the tumor on the spine and the MRI) can be very frustrating. Perhaps the MRI will reveal that the tumor's increase in size is insignificant, but even if I know today, it'll will have been a month before there can be a consultation to decide what to do next, if action is called for.
Mohamed and I have often said that the hardest part of the last 4½ years was the month between April 13, 2011 when the doctor in Topeka who had misdiagnosed me for six months (first, a torn rotator cuff, then bursitis) called to say it was cancer and the beginning of treatment. We were in a kind of limbo, not knowing who was going to do what where and when. A month of inaction seemed like a distant nightmare, but even if I hear something today, it'll be a month between the news that the spinal tumor is growing and any possible action.
Thanks to all of those of you who have texted or emailed inquiring about results. I'll post an update as soon as I do know something. Meanwhile, my fingers are crossed (except when typing) that the results are good and the worry has been for nothing.
On other fronts, we had more Halloween trick-or-treaters than for at least twenty years. And best of all, they were all very cute kids in costumes of all types--not a teen-ager among them. Of course, the fact that we ran out of candy by 8 o'clock (I was convinced that Mohamed had bought too much) might account for the lack of older kids.
And, of course, joy reigns supreme in this area after the great and often nail-biting World Series. Mohamed may, however, be grateful that baseball is over till the spring.
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