This past Monday evening, I went swimming for the first time since my amputation. Swimming was never my biggest activity in the past. I was actually quite slow to learn it, in fact, finally doing so after repeated frustration at not being able to fully participate in the pool parties that were popular in my grade school days. Even afterwards, I was always more comfortable on land, and could never get fully comfortable in the water.
But once that leg came off, swimming jumped high up on the list of things I wanted to do. In the water, I don't need a prosthetic leg to move around. So suddenly, I am not in an unaided state much less mobile than most people around me. The one time I took a bath during chemo, I actually did not feel legless. So once I was recovered and going about my daily life, this motivation put going to the pool high atop my list of things to do.
And so, on Monday evening, Ashley took me to the local pool where she works. (I'm visiting her this week.) I wanted to have someone there with me my first time in the water, and she was very helpful, watching my strokes and helping me adjust to doing them with only half a left leg. Yes, in this setting, I did once again feel legless. I had always done the kicks with two full legs in the past, and without two full legs, things felt much different. The basic freestyle kick alone didn't move me. The whip kick used in the breaststroke and elementary backstroke did, but the uneven leg length had me unable to move in a straight line. So my arms were crucial, and with them, I was able to do those strokes, though not very far as I need to get in much better cardiovascular shape. Furthermore, my right leg got a big workout from the times I was standing on it in the pool. I would have preferred a deep end where I could tread water to get some more exercise and take some pressure off the leg, but unfortunately, this pool did not have one.
Still, it felt great to get in the water and do a big exercise like swimming without having to use a prosthesis. I certainly will be back for more. And big things are possible for amputee swimmers, even without prosthetic legs. I found out last year about Natalie du Toit of South Africa, whose left leg was amputated at the knee as a teenager and yet competed in the 10K swim at the 2008 Beijing Olympics without a prosthesis. Though I'll certainly never be anything near an elite swimmer, the fact that it's possible for an amputee to swim competitively against Olympic athletes without any prosthetic help inspires me, and I look forward to more good days in the water.
Wednesday, March 12, 2014
Friday, February 28, 2014
Reintegration
Once again, it's been a long time since I last wrote here. Since then, I had my radiation treatment, recovered from it, and then at long last went home. That day was 10 days ago. Since then, it's been back to the life I once had. Sometimes, it feels like 2013 never happened, with how much of a departure it was from everything I'd experienced before. The evening in October 2012 before I woke up with my left foot and ankle in intense pain runs right up against the morning when I went back to the CS department at school, back to my old office. But then I get the reminder from my missing left leg that yes, it all happened.
I should now talk about my radiation treatment, which was now about a month ago. It started with a consultation with the radiation oncologist responsible for pediatric sarcomas, Dr. Wolden, during the first week of cycle 17, and I learned some interesting things from her. Even with all the talk of me getting radiation going back to cycle 3, she would not have recommended it were it not for some recent advances. The old way of giving radiation to the lungs was to just give radiation to the chest from both the front and the back. While simple and effective, this also puts other organs in the radiation field and subjects them to damage, most notably the heart. Dr. Wolden explained that with many more years likely ahead for me -- more reassurance, she viewed my prognosis favorably -- subjecting my heart to damage would not have been worth it. However, radiation can now be targeted so that the lungs get the most of it, and the heart is protected. This is enabled by controlling the intensity and shape of the radiation beams, and using imaging to guide them. The formal name is intensity modulated radiation therapy, or IMRT for short.
Getting the advanced IMRT required some advance preparation. The first step was getting a mold made of my chest from the rear, that I would lie still in while getting treatment. This was accomplished by having me lie down over the casting material, which hardened as I got a low-resolution chest CT scan that would be used to guide the radiation beams. During this time, I was also given five small black tattoo dots, each the size of a freckle, that would be used to line me up with the radiation machine when I was getting treatment. Three of the dots were along the center of my chest, along with one on each side. This all happened during the first day of the second week of cycle 17. The next step was a simulation appointment nine days later, when I lied down in the mold for the first time and the technicians had the radiation machine take simple X-rays of me, in essence a dry run for the treatment, which began one day later.
The next ten weekday mornings, I headed over to the radiation oncology unit in the morning, where once my name was called, I changed into a hospital gown in a locker room and then waited for my turn on the radiation machine. Each time I came in, the first step was to look at a photo on the screen and make sure it was me. The photo was taken on the day I had my mold made, and it was taken with me holding a piece of paper with my name on it below my face, like a mugshot. Then, I went to the machine and lied down on the narrow bed. The machine itself consists of that bed and a long arm that can rotate around and deliver X-ray radiation to me at any angle. The arm rotated to different spots during each treatment, stopping and then buzzing when it was delivering radiation. Each treatment took about 25 minutes.
Side effects were not as dramatic as chemo, but they were there. I did lose some energy, as the radiation's effect on the bone marrow in its path caused my blood counts to drop a bit. Most noticeable, though, was inflammation of my esophagus. Starting on the third or fourth day of treatment, it began feeling agitated. Eating was not quite as comfortable as it should have been. The feeling reminded me of the descriptions of acid reflux I would hear about in commercials. This took about a week to fade after treatment was over. I used that time to rest at first, and then began delving into my work again in preparation for my return home.
And now, here I am again. It feels truly great, every time I go back into my old office. I received a hero's welcome from the staff. I found myself getting back to my old research routine fairly quickly, which was nice. More importantly, just going about a normal day has quickly strengthened what remains of my left leg, and after a couple of days of adjustment, I was able to walk more seamlessly than I was in New York, with less pressure on the stump. Now comes the waiting game, the scanxiety, hoping the cancer is gone for good but unable to banish the thought that it could be back and send me back into the treatment bubble from which I had just emerged.
I should now talk about my radiation treatment, which was now about a month ago. It started with a consultation with the radiation oncologist responsible for pediatric sarcomas, Dr. Wolden, during the first week of cycle 17, and I learned some interesting things from her. Even with all the talk of me getting radiation going back to cycle 3, she would not have recommended it were it not for some recent advances. The old way of giving radiation to the lungs was to just give radiation to the chest from both the front and the back. While simple and effective, this also puts other organs in the radiation field and subjects them to damage, most notably the heart. Dr. Wolden explained that with many more years likely ahead for me -- more reassurance, she viewed my prognosis favorably -- subjecting my heart to damage would not have been worth it. However, radiation can now be targeted so that the lungs get the most of it, and the heart is protected. This is enabled by controlling the intensity and shape of the radiation beams, and using imaging to guide them. The formal name is intensity modulated radiation therapy, or IMRT for short.
Getting the advanced IMRT required some advance preparation. The first step was getting a mold made of my chest from the rear, that I would lie still in while getting treatment. This was accomplished by having me lie down over the casting material, which hardened as I got a low-resolution chest CT scan that would be used to guide the radiation beams. During this time, I was also given five small black tattoo dots, each the size of a freckle, that would be used to line me up with the radiation machine when I was getting treatment. Three of the dots were along the center of my chest, along with one on each side. This all happened during the first day of the second week of cycle 17. The next step was a simulation appointment nine days later, when I lied down in the mold for the first time and the technicians had the radiation machine take simple X-rays of me, in essence a dry run for the treatment, which began one day later.
The next ten weekday mornings, I headed over to the radiation oncology unit in the morning, where once my name was called, I changed into a hospital gown in a locker room and then waited for my turn on the radiation machine. Each time I came in, the first step was to look at a photo on the screen and make sure it was me. The photo was taken on the day I had my mold made, and it was taken with me holding a piece of paper with my name on it below my face, like a mugshot. Then, I went to the machine and lied down on the narrow bed. The machine itself consists of that bed and a long arm that can rotate around and deliver X-ray radiation to me at any angle. The arm rotated to different spots during each treatment, stopping and then buzzing when it was delivering radiation. Each treatment took about 25 minutes.
Side effects were not as dramatic as chemo, but they were there. I did lose some energy, as the radiation's effect on the bone marrow in its path caused my blood counts to drop a bit. Most noticeable, though, was inflammation of my esophagus. Starting on the third or fourth day of treatment, it began feeling agitated. Eating was not quite as comfortable as it should have been. The feeling reminded me of the descriptions of acid reflux I would hear about in commercials. This took about a week to fade after treatment was over. I used that time to rest at first, and then began delving into my work again in preparation for my return home.
And now, here I am again. It feels truly great, every time I go back into my old office. I received a hero's welcome from the staff. I found myself getting back to my old research routine fairly quickly, which was nice. More importantly, just going about a normal day has quickly strengthened what remains of my left leg, and after a couple of days of adjustment, I was able to walk more seamlessly than I was in New York, with less pressure on the stump. Now comes the waiting game, the scanxiety, hoping the cancer is gone for good but unable to banish the thought that it could be back and send me back into the treatment bubble from which I had just emerged.
Saturday, January 18, 2014
Done with chemo!
Been a long time since I last checked in. The new year came, and with it, my very last round of chemo, cycle 17. Yesterday, I had my very last chemo treatment. I can't believe that phase is finally over. It was just about a year ago that I'd started.
I've spent the day resting. I look forward to getting my energy back, both physically and mentally. Though I'm not completely done yet. I still have my radiation treatment, which starts on Wednesday. It's not supposed to take as much out of me. I certainly hope it doesn't, because having your energy sapped time and time again certainly gets more tiring each time it's done.
It feels great to have the end so close. But things won't be over with the end of treatment. There will be numerous follow-ups. For the first year, I'll have the usual scans, PET and chest CT, every three months. Every month in between, I am to get a complete blood count and a chest X-ray, the former also being taken when I have the three-month scans. The first of these will be in late March. Clean scans here, and I'll have my chemo port taken out. At the six month mark, if the scans are again clean, I'll get some more detailed blood work done. I might even need to get some of my immunizations redone, as the repeated beatings chemo gave my immune system might have wiped some of them out.
I'll have more details about the radiation in my next post. For now, though, time to get some more rest. I certainly hope this is the last time I'll ever have to deal with chemo and its side effects.
I've spent the day resting. I look forward to getting my energy back, both physically and mentally. Though I'm not completely done yet. I still have my radiation treatment, which starts on Wednesday. It's not supposed to take as much out of me. I certainly hope it doesn't, because having your energy sapped time and time again certainly gets more tiring each time it's done.
It feels great to have the end so close. But things won't be over with the end of treatment. There will be numerous follow-ups. For the first year, I'll have the usual scans, PET and chest CT, every three months. Every month in between, I am to get a complete blood count and a chest X-ray, the former also being taken when I have the three-month scans. The first of these will be in late March. Clean scans here, and I'll have my chemo port taken out. At the six month mark, if the scans are again clean, I'll get some more detailed blood work done. I might even need to get some of my immunizations redone, as the repeated beatings chemo gave my immune system might have wiped some of them out.
I'll have more details about the radiation in my next post. For now, though, time to get some more rest. I certainly hope this is the last time I'll ever have to deal with chemo and its side effects.
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