What was supposed to be a five-day trip was accomplished in one. Tom and I are flying home this morning after the doctor we met at M.D. Anderson' Sarcoma Center told us my presence was no longer needed. Sarcoma experts here in Houston will study my case and get a follow-up treatment recommendation to me within two weeks.
Short as it was, we feel good about this trip. The Houston medical personnel seem highly competent. Chemo looks more likely now, but also a bit less scary. I better understand the need for it to be inpatient to ensure good hydration. I am also comforted to hear from the Houston doctor that the University of Michigan, where my two Columbus oncologists have conferred with colleagues on my care, is also a respected sarcoma center, just not as experienced as Houston.
The bonus with this trip was the Houston warmth and sunshine. That makes it harder to head back to Columbus' chilly rain, but it will still be good to be home.
Tuesday, April 14, 2009
Friday, April 10, 2009
Houston bound
The call I've been anticipating came yesterday. My appointment to get a second opinion from the M.D. Anderson Cancer Center on follow-up treatment starts Monday. It is impressive that they responded so quickly to the request I initiated just a week ago. I just hope their physicians can agree better than those I have seen in Columbus.
The radiation oncologist I saw earlier this week recommends a course of radiation over the entire area of my abdomen where the tumor had been. That should keep it from coming back in that vicinity, he said, but would not prevent a recurrence elsewhere. Given the entrails that occupy that neighborhood, the treatment would likely produce nausea and diarrhea, he said, in addition to the usual fatigue.
Even more disturbing, the radiation oncologist said seeing two different types of sarcoma in one tumor was not unusual. It was just a matter of one stem type differentiating in two directions, he said casually, shaking my confidence in the medical oncologist who said he had never seen that occur and giving me even more reason not to jump at the medical oncologist's request to hospitalize me for heavy-duty chemo. The chemo-pushing medical oncologist had urged me to keep the appointment with the second doc this week, even though he didn't think the radiation oncologist would recommend radiation at all, since the margins around where the tumor was removed were clean.
So far, this quest for a decision regarding follow-up care has me feeling like the OSU docs are various hammers who see me as their own special nail. I hope the doctors in Houston -- where I'm told they have the only dedicated sarcoma center of any of the major cancer hospitals in the country -- do a better job of conferring with each other to reach a consensus for the best plan to keep me healthy. Even better if their plan would be to keep a watchful eye and forgo more treatment just now.
The radiation oncologist I saw earlier this week recommends a course of radiation over the entire area of my abdomen where the tumor had been. That should keep it from coming back in that vicinity, he said, but would not prevent a recurrence elsewhere. Given the entrails that occupy that neighborhood, the treatment would likely produce nausea and diarrhea, he said, in addition to the usual fatigue.
Even more disturbing, the radiation oncologist said seeing two different types of sarcoma in one tumor was not unusual. It was just a matter of one stem type differentiating in two directions, he said casually, shaking my confidence in the medical oncologist who said he had never seen that occur and giving me even more reason not to jump at the medical oncologist's request to hospitalize me for heavy-duty chemo. The chemo-pushing medical oncologist had urged me to keep the appointment with the second doc this week, even though he didn't think the radiation oncologist would recommend radiation at all, since the margins around where the tumor was removed were clean.
So far, this quest for a decision regarding follow-up care has me feeling like the OSU docs are various hammers who see me as their own special nail. I hope the doctors in Houston -- where I'm told they have the only dedicated sarcoma center of any of the major cancer hospitals in the country -- do a better job of conferring with each other to reach a consensus for the best plan to keep me healthy. Even better if their plan would be to keep a watchful eye and forgo more treatment just now.
Thursday, April 9, 2009
Hi Grandma!
My Cancer 2.0 journey since September has exposed me to a lot of great medical technology but nothing compares to what I saw yesterday. On a video screen in an obstetrician's office, my first grandchild waved to me!
The image was grainy and fleeting, but the physician confidently interpreted the greeting for me and my daughter, pointing out the right hand alongside the face of my grandson, who is due to make his grand entrance in mid-July. We watched his heart beat, examined his toes, admired his nicely shaped head and smiled proudly as the doctor noted he has long leg bones that predict he will take after his 6-foot-plus father and grandfather.
The doctor knew what a treat it was for me to share this sneak preview. She is herself a new, first-time grandma. I had seen her for my annual gynecological checkup a few weeks ago and she was saddened to learn of my recent illness. I think she invited me to accompany Mandy for a yesterday's ultrasound exam as a get-well gift. It was the best one I have received so far!
The image was grainy and fleeting, but the physician confidently interpreted the greeting for me and my daughter, pointing out the right hand alongside the face of my grandson, who is due to make his grand entrance in mid-July. We watched his heart beat, examined his toes, admired his nicely shaped head and smiled proudly as the doctor noted he has long leg bones that predict he will take after his 6-foot-plus father and grandfather.
The doctor knew what a treat it was for me to share this sneak preview. She is herself a new, first-time grandma. I had seen her for my annual gynecological checkup a few weeks ago and she was saddened to learn of my recent illness. I think she invited me to accompany Mandy for a yesterday's ultrasound exam as a get-well gift. It was the best one I have received so far!
Tuesday, April 7, 2009
Muse or snooze?
Approaching eight weeks post-surgery, I am amazed at the recovery I have enjoyed so far. I have energy to get through most days easily and any lingering pain in my abdomen is almost an afterthought. As I rise up out of bed using stomach muscles that I so recently had to protect from stress, I have toyed with the thought of trying a couple of crunches. I'm not quite there, but close.
I'm almost all the way back to the level of functioning that I want to be at, and I am thankful that it has taken less time than I might have guessed.
My final concession to recuperation has been sleep. It is important to rest, I keep reminding myself. So the alarm clock has not been set quite so early; leaving more time in the morning to capture dreams, less time to share dreams in this blog. Soon I will be writing again every morning, starting the day with the mental exercise that has become as important to me as a good physical workout once was. And maybe then I will even get back to the gym!
I'm almost all the way back to the level of functioning that I want to be at, and I am thankful that it has taken less time than I might have guessed.
My final concession to recuperation has been sleep. It is important to rest, I keep reminding myself. So the alarm clock has not been set quite so early; leaving more time in the morning to capture dreams, less time to share dreams in this blog. Soon I will be writing again every morning, starting the day with the mental exercise that has become as important to me as a good physical workout once was. And maybe then I will even get back to the gym!
Sunday, April 5, 2009
Perspective
I violated one of my cardinal rules yesterday and ended up giving myself a needed reminder. The rule is to always look on the bright side.
For me, the rule stems from this axiom: You can't control all the circumstances in your life, but you can control how you respond to them. I have tried to model a positive perspective as much as I have encouraged my children to find the good in whatever bad things come their way.
Often, events that threaten our outlook are little things or temporary setbacks, though they loom as monsters of the moment. Even silly situations can trigger a bad mood, as in my case yesterday. It was a sunny spring Saturday with all kinds of promise, but I kept letting our finicky home computer dictate my disposition. My energy level was already low from a poor night's sleep. As I tried to complete our city tax return, the computer kept crashing and dashing my spirit along with it.
What a bad day, a little voice kept whispering, and I found myself uncharacteristically agreeing. As evening gathered and I assessed the day's events, I had to admit it was actually a very good day. I had accomplished much and enjoyed interactions with family, despite allowing a gloomy filter to color frustrations that I should have shaken off.
The lesson is to balance setbacks against the backdrop of my many blessings so I can respond positively to bumps in the road. My well-rested perspective this morning can see more clearly the upside of yesterday's computer crashes: they were invitations to take a nap and regain my equilibrium instead of plodding on in a foul mood. Next time, I'll take the cue.
For me, the rule stems from this axiom: You can't control all the circumstances in your life, but you can control how you respond to them. I have tried to model a positive perspective as much as I have encouraged my children to find the good in whatever bad things come their way.
Often, events that threaten our outlook are little things or temporary setbacks, though they loom as monsters of the moment. Even silly situations can trigger a bad mood, as in my case yesterday. It was a sunny spring Saturday with all kinds of promise, but I kept letting our finicky home computer dictate my disposition. My energy level was already low from a poor night's sleep. As I tried to complete our city tax return, the computer kept crashing and dashing my spirit along with it.
What a bad day, a little voice kept whispering, and I found myself uncharacteristically agreeing. As evening gathered and I assessed the day's events, I had to admit it was actually a very good day. I had accomplished much and enjoyed interactions with family, despite allowing a gloomy filter to color frustrations that I should have shaken off.
The lesson is to balance setbacks against the backdrop of my many blessings so I can respond positively to bumps in the road. My well-rested perspective this morning can see more clearly the upside of yesterday's computer crashes: they were invitations to take a nap and regain my equilibrium instead of plodding on in a foul mood. Next time, I'll take the cue.
Friday, April 3, 2009
Agreeable work
It's a rainy Friday morning and plenty of people are pulling the covers up over their heads right now; ready for the weekend and wishing they could sleep in rather than finishing out the work week. I've been there, too, but my experience this week has shown me how much I am actually energized by my work.
My game plan was to ease back into it this week by working half days. Instead, the only day I was able to limit myself to four hours in the office was the day I had to leave early for a follow-up appointment with my oncologist. I didn't feel like I was pushing myself too hard the other days. It was a welcome break to think about other matters. I could forget about cancer for a while, and I did.
A call from the OSU oncologist yesterday morning pulled me back to reality with a gentle scolding that I needed to make progress on my quest for a second opinion regarding follow-up treatment to try to keep the cancer from returning. Now I am waiting for a call from Houston that will put me and Tom on a plane to learn what sarcoma experts at a cancer center there think we should do next.
I know I can't pretend just yet that February's surgery removed all my cancer concerns, but it has been nice this week to have other things to think about for a while.
My game plan was to ease back into it this week by working half days. Instead, the only day I was able to limit myself to four hours in the office was the day I had to leave early for a follow-up appointment with my oncologist. I didn't feel like I was pushing myself too hard the other days. It was a welcome break to think about other matters. I could forget about cancer for a while, and I did.
A call from the OSU oncologist yesterday morning pulled me back to reality with a gentle scolding that I needed to make progress on my quest for a second opinion regarding follow-up treatment to try to keep the cancer from returning. Now I am waiting for a call from Houston that will put me and Tom on a plane to learn what sarcoma experts at a cancer center there think we should do next.
I know I can't pretend just yet that February's surgery removed all my cancer concerns, but it has been nice this week to have other things to think about for a while.
Wednesday, April 1, 2009
Rare
Most of us want to be special, but not in the way the OSU oncologist described it to me yesterday.
Tom and I met with the doctor to learn results of two scans I had last week and to hear his recommendation for any follow-up treatment. The good news is the CT scan and the bone scan were both clear; there were no findings of cancer still lurking. While that was a great relief, it was not comforting to hear what has the doctor perplexed and his proposed course of treatment.
The report back from a sarcoma pathologist who had double-checked slides of the mass taken from my abdomen confirmed two different, rare cancers were present in the tumor. Most prevalent was the leiomyosarcoma initially diagnosed in September. Along with it was a bone sarcoma, which rarely occurs in adults and rarely occurs in tissue that is not bone. My doctor has seen adults with a bone sarcoma in non-bone tissue, but he has never encountered that situation in combination with another sarcoma in the same tumor.
While my scans showed no lingering or recurrent cancer, his initial recommendation for preventive care is a nasty regimen of chemotherapy requiring another 15 days in the hospital. It would involve a five-day admission for intravenous chemo, to be repeated in three weeks and then again for a total of three treatments. The hospital stay is due to the drugs' harsh side effects.
Thankfully, the oncologist encourages a second opinion, especially since he hasn't treated a case like mine before. He is also consulting some of his peers, and he called last night to report another sarcoma expert advised a wait-and-watch approach for now.
My homework is to work with my health insurer to explore a second opinion from specialists at a top sarcoma center in Houston. I'd like to hear them say they have seen this before and know just how to keep it from coming back -- something that doesn't require a hospital stay for rumpus-kicking chemo.
Tom and I met with the doctor to learn results of two scans I had last week and to hear his recommendation for any follow-up treatment. The good news is the CT scan and the bone scan were both clear; there were no findings of cancer still lurking. While that was a great relief, it was not comforting to hear what has the doctor perplexed and his proposed course of treatment.
The report back from a sarcoma pathologist who had double-checked slides of the mass taken from my abdomen confirmed two different, rare cancers were present in the tumor. Most prevalent was the leiomyosarcoma initially diagnosed in September. Along with it was a bone sarcoma, which rarely occurs in adults and rarely occurs in tissue that is not bone. My doctor has seen adults with a bone sarcoma in non-bone tissue, but he has never encountered that situation in combination with another sarcoma in the same tumor.
While my scans showed no lingering or recurrent cancer, his initial recommendation for preventive care is a nasty regimen of chemotherapy requiring another 15 days in the hospital. It would involve a five-day admission for intravenous chemo, to be repeated in three weeks and then again for a total of three treatments. The hospital stay is due to the drugs' harsh side effects.
Thankfully, the oncologist encourages a second opinion, especially since he hasn't treated a case like mine before. He is also consulting some of his peers, and he called last night to report another sarcoma expert advised a wait-and-watch approach for now.
My homework is to work with my health insurer to explore a second opinion from specialists at a top sarcoma center in Houston. I'd like to hear them say they have seen this before and know just how to keep it from coming back -- something that doesn't require a hospital stay for rumpus-kicking chemo.
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