Pardon the delay... Would have posted something earlier, except that a lot's been going on this week. First off, I started the new chemo cycle with irinotecan and temozolomide. They have been easier on me than the cyclophosphamide/doxorubicin/vincristine combination of the last three cycles, but they've still done a number on me. I still get nausea, though not to the same degree as before. I can eat meals of almost normal size, though I will feel some queasiness afterwards. When I'm done for the day, fatigue soon sets in, and I find myself spending a lot of time in bed. A full night's sleep helps a lot, but then I get more drugs and it's back to fatigue once again. Hopefully, the weekend gives me a breather. No diarrhea so far, so that's good news, though I've been told that if it happens, it's usually during the second week.
The routine has been like this: except for Monday, when I went in the afternoon, I show up at the hospital in the morning, where I get checked quickly by a member of the sarcoma team and then get hooked up to an IV. I don't get a bed because I'm not there for long; I find a seat, and open up my laptop to keep busy. Before I get any chemo, I get a couple of anti-nausea medicines through the IV. Then, the nurse comes by with the irinotecan and temozolomide. The temozolomide is given as pills, which I take first. Then the irinotecan is hooked up to the IV, where it is given over an hour. Once it's over, I'm done, just in time for lunch.
There's been no rest for the weary, though. The last three afternoons, I've had other things to do besides rest. I had physical therapy on Wednesday and today to further strengthen my legs in preparation for full-time walking with a prosthesis. On Thursday, I got a new prosthesis, ahead of schedule. It's actually semi-temporary rather than temporary. The top part (the socket) will go through more iterations. The bottom part has a flexible foot assembly that's supposed to last me a while and even enable me to go running when I build up the strength for it. I look forward to going running again one day, that's for sure, but first, I'll have a lot of walking to do. Here's a picture of me holding the new leg:
Hopefully, the weekend does bring me some rest because I desperately need it. Along with the fatigue, my brain has turned into mush each evening, making me feel like a zombie. Yesterday morning, I specifically remember waking up and thinking, "Wow, my brain is working again! What exactly was I doing yesterday afternoon?" It's not that I didn't know what I was doing; I remember specifically the events of the day, but I was to some degree going through the motions, with a lot of my ability to concentrate completely gone. Thankfully, it's recovered each morning with sleep. So here's hoping some sleep without having to worry about chemo gives me at least one full day with a fully functional brain!
Friday, March 29, 2013
Wednesday, March 20, 2013
First In-Chemo Scans Are In
Yesterday morning, I had a pair of scans. The first was a CT scan of my chest. The second was a PET scan of my whole body. The CT scan looks at my lungs in detail; that's the most common area for Ewing's tumors to spread. The PET scan tracks the uptake of a radioactive sugar injected into my bloodstream throughout my body. Cancer cells take up sugar faster than normal cells, so they show up the scan as areas of dramatically increased uptake of the sugar, which can be tracked through the sugar's radioactive decay.
The PET scan turned up completely clear, which was great to hear. On the CT scan, the radiologist identified three suspicious spots, all very small. These same spots showed up on the chest CT that was part of my initial set of scans back in January. They were determined to be inconclusive for metastatic disease (they did not show up on a PET scan that was taken three days prior to it), hence the "no definitive spread" comment in my first post. Two of them were about the same size as many other tiny spots that appeared on the scan that raised no alarm because they were identified as being part of the natural structure of my lungs. One was larger, estimated at 4mm in diameter on the first scan and down to 2mm in diameter on this scan. My oncologist showed the images to me and went over the results himself. The first set of scans were enough for him to put me on the year-long treatment protocol for disease with confirmed spread. This set, while still officially inconclusive, was enough in his mind to say that there was some lung spread as well. He's going to wait until the next set of scans, which will come after three more cycles, to make the determination on this course of action, but he's likely to prescribe a 10 day course of radiation therapy for my lungs after chemo is done to kill off any cancer cells there that it happens to miss.
The official word from my oncologist was that the results were very good. My family was definitely pleased. It took me a bit of time before I'd comfortably reached this position. I was hoping that the lung spots were instead going to be found to be definitively not cancer, or if they were cancer, that they were so responsive to chemo that they would vanish instantly. I had to reflect on this some more. My oncologist has seen many cases of Ewing's sarcoma over the course of his medical career. It's an aggressive cancer, so I imagine he's seen a number of cases where there's spread and it spirals out of control, and that was a fear of mine going into the scan, that more spots would show up. So really, this is something to be happy with, that the disease is currently under control. It's natural to want the very, very best possible outcomes, but that train left the station a long time ago; otherwise I wouldn't have gotten cancer in the first place!
Now, it's onto cycle number four as planned, which starts this coming Monday. I'm getting a different pair of drugs this time, called irinotecan and temozolomide. It's still going to be a three week cycle, though I will get the irinotecan over 10 days (Monday through Friday of the first two weeks), with temozolomide during the first five days. In terms of nausea and their effect on my blood counts, these drugs are not supposed to be as hard as the combo I received during my first three cycles. The thing to watch out for is that irinotecan can cause diarrhea. I have compensatory medicines all lined up -- there's an antibiotic that's supposed to kill off enough bacteria in my intestines to prevent them from activating the drug (irinotecan is actually a "prodrug" that gets converted into an active chemotherapy drug by the liver, but intestinal bacteria can also activate it, which is the cause of the diarrhea), and activated charcoal as well as another layer of defense. Hopefully, this will be enough. There are other medicines if this is not the case, but hopefully I won't need them. I'll have more details on the subject next week. One more thing I'd mentioned earlier -- I was originally slated to get my temporary prosthesis two days ago, but due to a delay in insurance approval, this did not happen. The approval just came, but thanks to my chemo schedule, this means I won't get the prosthesis until three weeks after the original day. Not to worry, though: the prosthetist told me that the temporary prosthesis will be mostly like the test socket, only smaller to account for further shrinking of my residual left leg, so I can keep getting practice with the test socket and not miss a beat.
The PET scan turned up completely clear, which was great to hear. On the CT scan, the radiologist identified three suspicious spots, all very small. These same spots showed up on the chest CT that was part of my initial set of scans back in January. They were determined to be inconclusive for metastatic disease (they did not show up on a PET scan that was taken three days prior to it), hence the "no definitive spread" comment in my first post. Two of them were about the same size as many other tiny spots that appeared on the scan that raised no alarm because they were identified as being part of the natural structure of my lungs. One was larger, estimated at 4mm in diameter on the first scan and down to 2mm in diameter on this scan. My oncologist showed the images to me and went over the results himself. The first set of scans were enough for him to put me on the year-long treatment protocol for disease with confirmed spread. This set, while still officially inconclusive, was enough in his mind to say that there was some lung spread as well. He's going to wait until the next set of scans, which will come after three more cycles, to make the determination on this course of action, but he's likely to prescribe a 10 day course of radiation therapy for my lungs after chemo is done to kill off any cancer cells there that it happens to miss.
The official word from my oncologist was that the results were very good. My family was definitely pleased. It took me a bit of time before I'd comfortably reached this position. I was hoping that the lung spots were instead going to be found to be definitively not cancer, or if they were cancer, that they were so responsive to chemo that they would vanish instantly. I had to reflect on this some more. My oncologist has seen many cases of Ewing's sarcoma over the course of his medical career. It's an aggressive cancer, so I imagine he's seen a number of cases where there's spread and it spirals out of control, and that was a fear of mine going into the scan, that more spots would show up. So really, this is something to be happy with, that the disease is currently under control. It's natural to want the very, very best possible outcomes, but that train left the station a long time ago; otherwise I wouldn't have gotten cancer in the first place!
Now, it's onto cycle number four as planned, which starts this coming Monday. I'm getting a different pair of drugs this time, called irinotecan and temozolomide. It's still going to be a three week cycle, though I will get the irinotecan over 10 days (Monday through Friday of the first two weeks), with temozolomide during the first five days. In terms of nausea and their effect on my blood counts, these drugs are not supposed to be as hard as the combo I received during my first three cycles. The thing to watch out for is that irinotecan can cause diarrhea. I have compensatory medicines all lined up -- there's an antibiotic that's supposed to kill off enough bacteria in my intestines to prevent them from activating the drug (irinotecan is actually a "prodrug" that gets converted into an active chemotherapy drug by the liver, but intestinal bacteria can also activate it, which is the cause of the diarrhea), and activated charcoal as well as another layer of defense. Hopefully, this will be enough. There are other medicines if this is not the case, but hopefully I won't need them. I'll have more details on the subject next week. One more thing I'd mentioned earlier -- I was originally slated to get my temporary prosthesis two days ago, but due to a delay in insurance approval, this did not happen. The approval just came, but thanks to my chemo schedule, this means I won't get the prosthesis until three weeks after the original day. Not to worry, though: the prosthetist told me that the temporary prosthesis will be mostly like the test socket, only smaller to account for further shrinking of my residual left leg, so I can keep getting practice with the test socket and not miss a beat.
Sunday, March 17, 2013
I Can Walk Again!
At 3:16pm Eastern time today, I took my first steps without crutches. It was a completely unexpected moment. I was getting ready for a walk with Ashley, my fiancee. Before we left, I wanted to do some of the swaying exercises which the physical therapist I saw on Friday taught me. I found it much easier to stand on my left leg than I did yesterday. Enough that I felt I should try a step on it. Which I did. And then I found I could walk on it. Without crutches! I was unbelievably happy. I was thinking this moment would come a while later, but it happened today. Today!
With this wind behind my sails, I selected a destination for our walk that tied into the theme of mobility -- the nearest subway station, 4 blocks north and 3 to the west. Using one crutch. We made a stop along the way at a small international grocery where Ashley bought some ice cream for me and some halva for my parents. More walking practice :) Once we reached the subway station, my first thought was to hop on a train and get to some farther away parts of New York, but I wanted to save some energy for the walk back, so I stuck with some stair practice. Sure enough, I needed the energy. I soon felt some tired muscles in my left leg, and though I used two crutches after leaving the station, I still needed a break. Thankfully, we found a bench along the way and sat on it for a few minutes before resuming the walk. After making it back, I ate some of the ice cream to celebrate and then went to bed to get some rest. But not before taking a few more crutchless steps. Even in my tired state, I couldn't help myself. The feeling of being able to do it again... I'm looking forward to many more!
And since this post would not be complete without video, here are a few of my early crutchless steps, courtesy of Ashley :)
With this wind behind my sails, I selected a destination for our walk that tied into the theme of mobility -- the nearest subway station, 4 blocks north and 3 to the west. Using one crutch. We made a stop along the way at a small international grocery where Ashley bought some ice cream for me and some halva for my parents. More walking practice :) Once we reached the subway station, my first thought was to hop on a train and get to some farther away parts of New York, but I wanted to save some energy for the walk back, so I stuck with some stair practice. Sure enough, I needed the energy. I soon felt some tired muscles in my left leg, and though I used two crutches after leaving the station, I still needed a break. Thankfully, we found a bench along the way and sat on it for a few minutes before resuming the walk. After making it back, I ate some of the ice cream to celebrate and then went to bed to get some rest. But not before taking a few more crutchless steps. Even in my tired state, I couldn't help myself. The feeling of being able to do it again... I'm looking forward to many more!
And since this post would not be complete without video, here are a few of my early crutchless steps, courtesy of Ashley :)
Saturday, March 16, 2013
White Blood Cells Finally Coming Back
My recent stay in the hospital was thankfully brief. Several cultures
were taken, but none grew anything of concern. My temperature stayed
low enough today and I got enough of my white blood cells back that I
was discharged before dinnertime. Hopefully any future hospitalizations
for fever and low white blood cell counts are few and brief. My nurse
today told me that she's seen ones that last over a week because it's a
bad infection or the patient's white blood cell counts just are taking
forever to recover.
This time around felt much less confining than the last time around. Of course, not having to recover from surgery was a big help. I initially felt nauseous from the illness, but those same meds that served me so well when I had chemo nausea changed that quickly, giving me a huge appetite. That changed my mood quickly because there's nothing like that to make you feel like you're not on chemo instead of on it. Then, there was the welcome change of once again having some ability to walk. I had the test socket with me, and was able to get some more practice in with it. A physical therapist came in one day and showed me some very useful exercises that were able to get me to start, though currently for very short periods of time, exclusively putting weight on the fake leg. I can now walk comfortably with one crutch as well; this enables me to pull along the IV stand I'm connected to like all the patients with two good legs are able to do. Mobility! Here is a video of me doing the IV pull in the hallway. Narrating is my lovely fiancee who is here visiting during Spring Break. As bald as I look here, believe it or not, I have a number of hairs still remaining! I lost most of my head and facial hair during my first cycle, but after losing some more during the second cycle, the hair loss has stabilized, at least for the moment.
This time around felt much less confining than the last time around. Of course, not having to recover from surgery was a big help. I initially felt nauseous from the illness, but those same meds that served me so well when I had chemo nausea changed that quickly, giving me a huge appetite. That changed my mood quickly because there's nothing like that to make you feel like you're not on chemo instead of on it. Then, there was the welcome change of once again having some ability to walk. I had the test socket with me, and was able to get some more practice in with it. A physical therapist came in one day and showed me some very useful exercises that were able to get me to start, though currently for very short periods of time, exclusively putting weight on the fake leg. I can now walk comfortably with one crutch as well; this enables me to pull along the IV stand I'm connected to like all the patients with two good legs are able to do. Mobility! Here is a video of me doing the IV pull in the hallway. Narrating is my lovely fiancee who is here visiting during Spring Break. As bald as I look here, believe it or not, I have a number of hairs still remaining! I lost most of my head and facial hair during my first cycle, but after losing some more during the second cycle, the hair loss has stabilized, at least for the moment.
Thursday, March 14, 2013
Cumulative Chemo Effects
One thing about this last cycle is that it's been much harder on me than the previous two. I already mentioned having to get a blood transfusion. Well, other parts of my blood have been slow to recover as well. The past two cycles, my immune system had recovered by this point. Not this time. My white blood cell count was even lower than it was on Monday, and my platelets were very low, necessitating a platelet transfusion. Compounding things, my temperature went up while I was getting the platelets. When it goes over 38C, it means you have to get hospitalized, and it was just this happened to me. I'm now being given antibiotics, in case there's a bacterial infection behind this (the possibility has to be guarded against, as with a very weakened immune system, I'd be in deep trouble if there is one brewing). I'll be here until my temperature drops and my white blood cell count recovers. Doctors and nurses have both said that later cycles can hit you harder than earlier ones because your body often doesn't fully recover before a new cycle starts. Well, looks like three cycles of this same set of chemo drugs have done just this to me. Good time to be switching to a new set. Hopefully that gives my body a break.
Tuesday, March 12, 2013
Always a New Side Effect
With each cycle, it seems like a new side effect pops up. Last cycle, I noticed that my fingers had gotten darker. Not to worry, I was told by my oncologist; pigmentation changes are in fact perfectly normal during chemo. This time, it's been a lingering taste on my tongue that has a metallic character. This is something I was told about during my first cycle, and while I'd noticed a bit of change in my taste during the first two cycles, it's been by far the most pronounced this cycle. It gets in the way of my fully tasting food, and annoyingly stays on my mouth when I'm not eating. Thankfully, I've found that chewing gum counters this.
Oh well, this is really not a big deal in the grand scheme of things; just thought it was some interesting news to report. My energy level is getting close to normal now, though my white blood cell counts are not surprisingly down and will have to recover. If the past two cycles are any indication, this should happen by the end of the week. The bigger events as far as treatment goes will happen in one week's time; I'll have my scans to see how well the chemo is doing, and I'll also get my actual temporary prosthesis. It's still temporary in that the remainder of my left lower leg will shrink even more as time progresses (I'll get a permanent prosthesis once the shrinking is complete), but it's much more permanent than the test socket I'm currently using, which feels a bit heavy to me, though maybe all prosthetic legs are going to feel a bit heavy given that they're not natural legs. Even the test socket is actually lighter than the part of my leg that it replaced; it was weighed at 2.5 kg, while I lost a little over 3 kg from the amputation (there's another feature about Sloan-Kettering: they use metric units instead of English ones). Well, I guess I'll find out if the temporary prosthesis is lighter in a week's time. Hopefully, I'll be more adept at walking when I get it. The leg swelling from the fluid infusion (I'd in fact gained between 5 and 6 kg of water weight from it!) during chemo cut out a lot of valuable practice time, but I've still made progress. I mostly use two crutches still when I walk with it, but I've gotten a lot better at walking with just one. The next big task for me is to be able to put my weight on only the prosthetic leg. I've been doing exercises where I gradually increase the amount of weight I put on it to achieve this goal. Hopefully, it's not too much longer before this happens. I'll be sure to post about it when it does :)
Oh well, this is really not a big deal in the grand scheme of things; just thought it was some interesting news to report. My energy level is getting close to normal now, though my white blood cell counts are not surprisingly down and will have to recover. If the past two cycles are any indication, this should happen by the end of the week. The bigger events as far as treatment goes will happen in one week's time; I'll have my scans to see how well the chemo is doing, and I'll also get my actual temporary prosthesis. It's still temporary in that the remainder of my left lower leg will shrink even more as time progresses (I'll get a permanent prosthesis once the shrinking is complete), but it's much more permanent than the test socket I'm currently using, which feels a bit heavy to me, though maybe all prosthetic legs are going to feel a bit heavy given that they're not natural legs. Even the test socket is actually lighter than the part of my leg that it replaced; it was weighed at 2.5 kg, while I lost a little over 3 kg from the amputation (there's another feature about Sloan-Kettering: they use metric units instead of English ones). Well, I guess I'll find out if the temporary prosthesis is lighter in a week's time. Hopefully, I'll be more adept at walking when I get it. The leg swelling from the fluid infusion (I'd in fact gained between 5 and 6 kg of water weight from it!) during chemo cut out a lot of valuable practice time, but I've still made progress. I mostly use two crutches still when I walk with it, but I've gotten a lot better at walking with just one. The next big task for me is to be able to put my weight on only the prosthetic leg. I've been doing exercises where I gradually increase the amount of weight I put on it to achieve this goal. Hopefully, it's not too much longer before this happens. I'll be sure to post about it when it does :)
Thursday, March 7, 2013
Tiredness
The first two cycles of chemo caused me to crash the weekend after the medicines were administered, requiring a lot of sleep. This came as no surprise. I was told that the drugs could stay in my system for as long as 72 hours, so if I start the cycle on a Monday, and have two days of the drugs being administered, then they're done ravaging my body by the end of the week, and then it's recovery time.
This time around, though, the tiredness came a lot earlier. Yesterday, I spent the majority of my time in the hospital drained of energy and sleeping on the bed, which was premature given my experience during my past two cycles. While my anti-nausea medicines can make me drowsy, my dose was adjusted during the first cycle to avoid them knocking me out. This happened the second day of my first cycle, when I was given too high of a dose. Today, I was again very tired, and the problem showed up in my blood work: the chemo had knocked down my hemoglobin, and it was now low enough that I needed a blood transfusion. I had to sign a consent form, and the hospital had to find some matching blood in its blood bank, but thankfully that did not take too long. It did push my release back -- the past two cycles, my last hydration day had been a half day, but this time around, it lasted until 3.
Good news is that it appears my energy level is fairly strong again. We'll see how I hold up this weekend, but currently, I am encouraged.
This time around, though, the tiredness came a lot earlier. Yesterday, I spent the majority of my time in the hospital drained of energy and sleeping on the bed, which was premature given my experience during my past two cycles. While my anti-nausea medicines can make me drowsy, my dose was adjusted during the first cycle to avoid them knocking me out. This happened the second day of my first cycle, when I was given too high of a dose. Today, I was again very tired, and the problem showed up in my blood work: the chemo had knocked down my hemoglobin, and it was now low enough that I needed a blood transfusion. I had to sign a consent form, and the hospital had to find some matching blood in its blood bank, but thankfully that did not take too long. It did push my release back -- the past two cycles, my last hydration day had been a half day, but this time around, it lasted until 3.
Good news is that it appears my energy level is fairly strong again. We'll see how I hold up this weekend, but currently, I am encouraged.
Tuesday, March 5, 2013
Cycle 3
My third cycle of chemo began yesterday. The drill has been the same as the previous two. I get three drugs, given over the first two days, with another day and a half for intravenous hydration. They all carry side effects, some quite harmful. I'm being given protective medicine for this too, but it does not take care of everything.
All of the medicines have two particular effects that even with compensantory treatment can cause problems. One is nausea. Though you get a lot of anti-nausea medicines to help you with this in the hospital, in me, still it kicked in by dinnertime during my first day of treatment. Still, take these medicines, religiously. If they can help you eat, it's huge given your need for calories. When the nausea fully kicked in, food then lost a lot of its appeal, though not entirely. A more accurate description would be that my appetite shifted. Instead of wanting my classic 3 big meals a day, I now wanted many smaller meals, as I would get hungry several times per day. However, each time, the hunger was shallow. I desperately needed nourishment each time, but too much and I would be unable to keep it down. I also needed something that would truly fill me up (which many "munch" size foods do not do) to satisfy each craving. This was toughest during the first cycle, when all I knew how to do was drink water to give stomach something that I knew it would keep down, but I gradually would expand my horizons. I was told by my doctors that I would need to focus on calorie-dense foods, as during chemo I'd be losing weight and want to keep from doing that as much as possible. Yes, you heard that right, the heart-healthy diet goes out the window! Lack of energy is another related problem -- the past two cycles, I was dead tired the weekend after I'd received chemo, beginning my return to life after the weekend was over.
The first thing I tried to satisfy my small meal cravings were Ensure shakes, recommended by a dietitian. These provided many more nutrients, plus a nice chocolate flavor, but they did not go down in a way that satisfied me. Through more trial and error, though, I was able to find some staple foods and drinks, many of the modifications to past foods and drinks I'd enjoyed. Oatmeal was one thing I'd always loved for breakfast -- instead of having it with water, though, having it with hot whole milk gave it a needed calorie boost and left me satisfied until almost lunchtime. Hot whole milk also played a big role in tea, where I got the soothing effect of tea combined with the calories and filing effect of the whole milk. Yes, we're seeing a theme here -- liquid-based foods are much easlier than my system than pure solids -- so time for some calorie packed soups. Next on the line have been thick soups, cream soups, and chilis, and all have so far been well received. Now, if only the available foods at the pediatric day hospital at Sloan-Kettering would include these... Nope, it's instead a largely unpalatable though appropriately targeted selection of kids-themed foods (the selection of foods at the main hospital, which I got to partake on after my surgery, was light years better). Thankfully, the cold cut sandwiches aren't too bad. We'll see how things turn out this cycle, but if the past two are any indiciation, I'll start regaining my original appetite midway through the second week.
The other big side effect is reduced blood counts, most specifically white blood cell counts. This is the biggest hazard during the second week of a cycle. If these fall too low, any illness requires immediate hospitalization. This has not happened to me yet, but I did have a close call when I caught a cold at the end of the second week of my second cycle. Thankfully, by then my white blood cell counts had already rebounded, due in large part to a shot they give you during chemo administration to enable to counts to rebound more quickly. Another cell type that undergoes a drop is the platlet. Platlets are key to enabling your blood to clot, and if the count falls too low, a transfusion is required (this why by the way you are told not to have any NSAIDs -- popular medicines like aspirin, ibuprofen, and naproxen -- during chemo as these impact platelet function). So far, I haven't needed any transfusions yet. Hopefully, this continues to be the case.
Before I get to more specifics, I would be remiss to mention another general-purpose side effect that is unavoidable even with compensatory medicine. As chemotherapy drugs target fast-dividing cells, this means that they kill a number of fast-dividing cells that are completely non-cancerous. The most classic example is the hair. The cancer patient is seen as someone who is completely bald, and while degree of hair loss varies from patient to patient, it's a fact of life for almost everyone. I haven't lost too much hair from my body, yet, but the majority of the hair on my face and on my scalp is now gone.
To get to more specific medicines now: one medicine, doxorubucin, is bright red and given quickly through IV. It's big side effect is that it can damage your heart. This is counteracted with another medicine given by IV before every doxorubicin infusion. However, to be sure no damage has happened, I'm getting an echocardiogram as part of my post-cycle 3 battery of scans. Another one, vincristine, is given as a injection push into my IV. It is known to cause constipation, for which I am taking stool softeners, and nerve damage. The latter is something to watch for; the telltale sign is unexplained tingling sensations. I'm getting such sensations, but in my amputated limb as the nerves are having to readjust, with no out of control escalation, so everything is ok on that front.
The medicine that's required the most compensatory measures has been cyclophosphamide. Each day I'm supposed to get it, I get it over 6 hours through IV. The effects don't show up right away, besides the nausea, but they do kick in. By the second week, my mouth feels agitated because a lot of its mucus lining has been destroyed. My throat will get sore. Mouth sores can develop. And these are just the simple side effects. The others are hit hard with compensatory medicine to avoid them. Cyclophosphamide can damage the bladder, so it is given in addition with a drug called mesna that protects it, along with copious amounts of intravenous fluids to constantly flush my bladder. Just one day of fluids was enough to cause my residual left leg to swell to the point of being unable to wear its prosthesis, so now I'll have to wait until the week is done before I can do that again :( As if the daytime fluid influx is not enough, I have to take a back pack of fluids and mesna (except for the very last night) with me every night when I come home from the hospital, connected to my IV port, and have them running until I'm back at the hospital to resume treatment. The last two and a half days I spend there are for hydration only, without any additional chemotherapy administered. I guess by now I shouldn't have been surprised when I looked up that cyclophosphamide has roots in the WWI chemical weapon mustard gas. Well, if it's going to wipe out my cancer, that's what it's going to take... To lighten the mood some, I'll now mention my last side effect from cyclophosphamide: hiccups!
After this cycle, I will get scans to see how my cancer is progressing, along with an echocardiogram to check on my heart. Assuming no changes to the treatment plan, my next two cycles will involve a pair of drugs with a different profile as far as side effects and how often I have to take them. I will be discussing those as my next cycle approaches. For now, so long, and I'll have more updates here as they come in.
All of the medicines have two particular effects that even with compensantory treatment can cause problems. One is nausea. Though you get a lot of anti-nausea medicines to help you with this in the hospital, in me, still it kicked in by dinnertime during my first day of treatment. Still, take these medicines, religiously. If they can help you eat, it's huge given your need for calories. When the nausea fully kicked in, food then lost a lot of its appeal, though not entirely. A more accurate description would be that my appetite shifted. Instead of wanting my classic 3 big meals a day, I now wanted many smaller meals, as I would get hungry several times per day. However, each time, the hunger was shallow. I desperately needed nourishment each time, but too much and I would be unable to keep it down. I also needed something that would truly fill me up (which many "munch" size foods do not do) to satisfy each craving. This was toughest during the first cycle, when all I knew how to do was drink water to give stomach something that I knew it would keep down, but I gradually would expand my horizons. I was told by my doctors that I would need to focus on calorie-dense foods, as during chemo I'd be losing weight and want to keep from doing that as much as possible. Yes, you heard that right, the heart-healthy diet goes out the window! Lack of energy is another related problem -- the past two cycles, I was dead tired the weekend after I'd received chemo, beginning my return to life after the weekend was over.
The first thing I tried to satisfy my small meal cravings were Ensure shakes, recommended by a dietitian. These provided many more nutrients, plus a nice chocolate flavor, but they did not go down in a way that satisfied me. Through more trial and error, though, I was able to find some staple foods and drinks, many of the modifications to past foods and drinks I'd enjoyed. Oatmeal was one thing I'd always loved for breakfast -- instead of having it with water, though, having it with hot whole milk gave it a needed calorie boost and left me satisfied until almost lunchtime. Hot whole milk also played a big role in tea, where I got the soothing effect of tea combined with the calories and filing effect of the whole milk. Yes, we're seeing a theme here -- liquid-based foods are much easlier than my system than pure solids -- so time for some calorie packed soups. Next on the line have been thick soups, cream soups, and chilis, and all have so far been well received. Now, if only the available foods at the pediatric day hospital at Sloan-Kettering would include these... Nope, it's instead a largely unpalatable though appropriately targeted selection of kids-themed foods (the selection of foods at the main hospital, which I got to partake on after my surgery, was light years better). Thankfully, the cold cut sandwiches aren't too bad. We'll see how things turn out this cycle, but if the past two are any indiciation, I'll start regaining my original appetite midway through the second week.
The other big side effect is reduced blood counts, most specifically white blood cell counts. This is the biggest hazard during the second week of a cycle. If these fall too low, any illness requires immediate hospitalization. This has not happened to me yet, but I did have a close call when I caught a cold at the end of the second week of my second cycle. Thankfully, by then my white blood cell counts had already rebounded, due in large part to a shot they give you during chemo administration to enable to counts to rebound more quickly. Another cell type that undergoes a drop is the platlet. Platlets are key to enabling your blood to clot, and if the count falls too low, a transfusion is required (this why by the way you are told not to have any NSAIDs -- popular medicines like aspirin, ibuprofen, and naproxen -- during chemo as these impact platelet function). So far, I haven't needed any transfusions yet. Hopefully, this continues to be the case.
Before I get to more specifics, I would be remiss to mention another general-purpose side effect that is unavoidable even with compensatory medicine. As chemotherapy drugs target fast-dividing cells, this means that they kill a number of fast-dividing cells that are completely non-cancerous. The most classic example is the hair. The cancer patient is seen as someone who is completely bald, and while degree of hair loss varies from patient to patient, it's a fact of life for almost everyone. I haven't lost too much hair from my body, yet, but the majority of the hair on my face and on my scalp is now gone.
To get to more specific medicines now: one medicine, doxorubucin, is bright red and given quickly through IV. It's big side effect is that it can damage your heart. This is counteracted with another medicine given by IV before every doxorubicin infusion. However, to be sure no damage has happened, I'm getting an echocardiogram as part of my post-cycle 3 battery of scans. Another one, vincristine, is given as a injection push into my IV. It is known to cause constipation, for which I am taking stool softeners, and nerve damage. The latter is something to watch for; the telltale sign is unexplained tingling sensations. I'm getting such sensations, but in my amputated limb as the nerves are having to readjust, with no out of control escalation, so everything is ok on that front.
The medicine that's required the most compensatory measures has been cyclophosphamide. Each day I'm supposed to get it, I get it over 6 hours through IV. The effects don't show up right away, besides the nausea, but they do kick in. By the second week, my mouth feels agitated because a lot of its mucus lining has been destroyed. My throat will get sore. Mouth sores can develop. And these are just the simple side effects. The others are hit hard with compensatory medicine to avoid them. Cyclophosphamide can damage the bladder, so it is given in addition with a drug called mesna that protects it, along with copious amounts of intravenous fluids to constantly flush my bladder. Just one day of fluids was enough to cause my residual left leg to swell to the point of being unable to wear its prosthesis, so now I'll have to wait until the week is done before I can do that again :( As if the daytime fluid influx is not enough, I have to take a back pack of fluids and mesna (except for the very last night) with me every night when I come home from the hospital, connected to my IV port, and have them running until I'm back at the hospital to resume treatment. The last two and a half days I spend there are for hydration only, without any additional chemotherapy administered. I guess by now I shouldn't have been surprised when I looked up that cyclophosphamide has roots in the WWI chemical weapon mustard gas. Well, if it's going to wipe out my cancer, that's what it's going to take... To lighten the mood some, I'll now mention my last side effect from cyclophosphamide: hiccups!
After this cycle, I will get scans to see how my cancer is progressing, along with an echocardiogram to check on my heart. Assuming no changes to the treatment plan, my next two cycles will involve a pair of drugs with a different profile as far as side effects and how often I have to take them. I will be discussing those as my next cycle approaches. For now, so long, and I'll have more updates here as they come in.
Sunday, March 3, 2013
Learning to Walk Again
As great as it feels for the cancerous foot to be gone, with it comes the inability to walk without assistance. This was already a problem even before my amputation -- after my biopsy, it was difficult for me to walk without the assistance of crutches. I was told to use crutches for the first two days afterwards, but once that period was over, I still found it difficult to walk without them. The reason became clear just before my amputation. Though the biopsy was performed in a nonintrusive fashion, so as not to disrupt my ability to walk -- a needle was inserted into one of the lesions in the foot to remove material there, and some scrapings were taken from the top of the lesion in the shin -- lumps had begun to form in those spots. Cancer cells must have been filling parts of the biopsied area where normal bone had previously been, compromising my foot and with it my ability to walk. Naturally, I was most glad to be rid of them, but that also meant I was never going to have that foot's function back ever again.
The physical and occupational therapists in the hospital were able to get me walking with a walker and crutches during my recovery from surgery, but that's very limited mobility. Full restoration will require a prosthesis. Thankfully, that process is underway. I received clearance from my surgeon at the end of January after he examined what remained of my lower left leg. I made an appointment at the nearby office of a nationally known prosthetic company recommended to me by a friend who is an orthopedic surgery resident, and from there, things progressed quickly. The lower part of my left leg would first need to shrink from its current size to fit a prosthesis. This is an inevitable process, as muscles there that I am not going to be using anymore are going to atrophy, but there are things to wear to speed the process along and ensure the limb is prepared for the prosthesis. I started with a tight shrinker sock to put over it. The next item I received was a silicone sleeve that rolled up to a little over the knee, shortly after I was disconnected from the IVs from my second chemo administration. At that time, a cast was also taken of the part of knee that was in the sleeve -- I'll be wearing that sleeve whenever I'm wearing the prosthesis. From that cast, I will be made a temporary prosthesis that I will use until the shrinking process is complete. Then, I will get a permanent prosthesis.
I am expecting to receive my temporary prosthesis in a week or two, but I was given something else last Tuesday: a test socket to practice walking in! I can currently only walk with the help of crutches, but it feels a lot better than using crutches or a walker without it, and I can go for much longer distances. Here is a video of some of my first steps in the prosthetist's office:
The physical and occupational therapists in the hospital were able to get me walking with a walker and crutches during my recovery from surgery, but that's very limited mobility. Full restoration will require a prosthesis. Thankfully, that process is underway. I received clearance from my surgeon at the end of January after he examined what remained of my lower left leg. I made an appointment at the nearby office of a nationally known prosthetic company recommended to me by a friend who is an orthopedic surgery resident, and from there, things progressed quickly. The lower part of my left leg would first need to shrink from its current size to fit a prosthesis. This is an inevitable process, as muscles there that I am not going to be using anymore are going to atrophy, but there are things to wear to speed the process along and ensure the limb is prepared for the prosthesis. I started with a tight shrinker sock to put over it. The next item I received was a silicone sleeve that rolled up to a little over the knee, shortly after I was disconnected from the IVs from my second chemo administration. At that time, a cast was also taken of the part of knee that was in the sleeve -- I'll be wearing that sleeve whenever I'm wearing the prosthesis. From that cast, I will be made a temporary prosthesis that I will use until the shrinking process is complete. Then, I will get a permanent prosthesis.
I am expecting to receive my temporary prosthesis in a week or two, but I was given something else last Tuesday: a test socket to practice walking in! I can currently only walk with the help of crutches, but it feels a lot better than using crutches or a walker without it, and I can go for much longer distances. Here is a video of some of my first steps in the prosthetist's office:
Saturday, March 2, 2013
The Beginning
Welcome to my blog! For the longest time, I never envisioned myself starting one, but circumstances have a way of making things happen that you don't envision. In my case, it was cancer. Until now, I have yet to reveal my diagnosis to my entire circle, but from those I have already shared the news with, I have received so many amazing messages of support that answering them individually (my preferred style) is just too overwhelming. And so, I have created this blog.
The ordeal all started in early October of last year, with intense bone pain where my left foot meets the ankle. I've had a history of pain in that foot, mostly in the 5th metatarsal, the upper part of which I had broken back in May 2000. Up to that point, the pain was occasional and connected mainly to overuse when running, and never too serious. This was something different. Much more intense, with some swelling too. Still, I had put in a good amount of running in August and September. It must have been connected to that, right?
The pain subsided after 3 days, but I had kept the foot immobilized for a while longer thinking I'd give it time to heal. In the meantime, I saw doctors to see if there was anything else going on. A huge battery of blood tests came back normal, no specific cause was found, and I began physical therapy looking forward to getting back in the saddle. Turns out I was not done. After more bouts of pain in November and December, I started to get the feeling this was something bigger. The latter flare-up was the really telling one, because it came right after a week of once again keeping the foot immobilized. Now that's a sign of something that's not an injury.
Still, I didn't think it was possible I had cancer. I never could entirely expel the thought from my mind -- a student in my very Ph.D. program had passed away from bone cancer a couple of years before -- but I still thought there was no way that was what was happening with me. An MRI had revealed bone "lesions" in 5 bones of the foot (one of which was my original injury site, the 5th metatarsal) plus one in the shin bone where it meets the ankle, but lesion is a generic term that can encompass many things. It could have been accumulated damage from years of wear and tear. And the doctors told me that what I had was a highly unusual presentation for cancer. There was no big lump, and if all those lesions were cancer, then I certainly would be worse off, with spread likely in many places in my body, which should show up in my blood work, no?
Nonetheless, since the thought of cancer was still there in my mind, I asked for a biopsy, for which I was referred to an orthopedic surgeon. He removed bone from two of the lesions so that it could be looked at to see what exactly was happening. Eight days later, I got the bad news. The pathologists at the local hospital did not have an exact diagnosis, but it definitely was cancer, and they thought it was most likely Ewing's sarcoma, a cancer most often seen in bone, but that sometimes also occurs in soft tissue. I remember a quote of the odds of this being 1 in 100 million, given the rarity of bone cancers to begin with and that they usually occurred in children and adolescents, with cases in adults over 30 being very rare. The surgeon sounded pretty grave, saying it would need specialist treatment at one of the big national cancer centers. Thankfully, he was able to get me an appointment one week later at Sloan-Kettering in New York.
And so, I headed out to the Big Apple, with my parents and fiancee making the trip as well, to see what I were up against and to get treatment. The first doctor I saw was their chief orthopedic surgeon, who has many years of experience with bone cancer. He ordered many scans to check for spread. The scariest days were the ones between my diagnosis and when the scan results came in. I was fearing the worst, namely massive spread. Miraculously enough, there was no definitive spread found outside the 6 bone tumors. Surgical removal of all the tumors was possible given their location, but it would require amputation of my left leg below the knee. The Sloan-Kettering pathologists were also able to confirm that my cancer was in fact Ewing's sarcoma.
It would have been nice if surgery was all that was necessary, but that was not the case. The day before my operation, I saw the head of Sloan-Kettering's pediatric sarcoma team. Yes, pediatric. That is the team that treats Ewing's sarcoma at Sloan-Kettering given its prevalence in children. The thought of being a 31 year old pediatrics patient was strange at first, but not to worry, I was told -- his team has seen even older patients. I would need a lot of chemo in addition to the surgery to ensure that there would be no recurrence of the cancer, and to eliminate any currently undetectable spread of the existing cancer, which I was told was a distinct possibility.
The surgery itself went smoothly. I had in fact had a recurrence of intense cancer pain the day before, so I was in a quite unique position of being in less pain after surgery than before it (the post-surgery painkillers were of course necessary to ensure that, but even so, pain was not a big issue for me post-surgery in spite of pain being the most frequent thing I was asked about by the doctors and nurses). After 5 nights in the hospital, I was done, and set to start chemo the week after my discharge. That's what I'm in the midst of now, just about to start the third of 17 cycles of treatment. I'll be writing in detail about that shortly. It's by far been and will continue to be the most intense part of my treatment, and will naturally get a lot of attention. Other things I'll talk about are life as an amputee, the long road to running again (yes, that's my goal; good thing there are advanced prostheses these days!), and balancing the remainder of my Ph.D. program with cancer treatments. Though this is going to be a long battle, I am in it for the long haul, here to fight it and win while still living my life.
The ordeal all started in early October of last year, with intense bone pain where my left foot meets the ankle. I've had a history of pain in that foot, mostly in the 5th metatarsal, the upper part of which I had broken back in May 2000. Up to that point, the pain was occasional and connected mainly to overuse when running, and never too serious. This was something different. Much more intense, with some swelling too. Still, I had put in a good amount of running in August and September. It must have been connected to that, right?
The pain subsided after 3 days, but I had kept the foot immobilized for a while longer thinking I'd give it time to heal. In the meantime, I saw doctors to see if there was anything else going on. A huge battery of blood tests came back normal, no specific cause was found, and I began physical therapy looking forward to getting back in the saddle. Turns out I was not done. After more bouts of pain in November and December, I started to get the feeling this was something bigger. The latter flare-up was the really telling one, because it came right after a week of once again keeping the foot immobilized. Now that's a sign of something that's not an injury.
Still, I didn't think it was possible I had cancer. I never could entirely expel the thought from my mind -- a student in my very Ph.D. program had passed away from bone cancer a couple of years before -- but I still thought there was no way that was what was happening with me. An MRI had revealed bone "lesions" in 5 bones of the foot (one of which was my original injury site, the 5th metatarsal) plus one in the shin bone where it meets the ankle, but lesion is a generic term that can encompass many things. It could have been accumulated damage from years of wear and tear. And the doctors told me that what I had was a highly unusual presentation for cancer. There was no big lump, and if all those lesions were cancer, then I certainly would be worse off, with spread likely in many places in my body, which should show up in my blood work, no?
Nonetheless, since the thought of cancer was still there in my mind, I asked for a biopsy, for which I was referred to an orthopedic surgeon. He removed bone from two of the lesions so that it could be looked at to see what exactly was happening. Eight days later, I got the bad news. The pathologists at the local hospital did not have an exact diagnosis, but it definitely was cancer, and they thought it was most likely Ewing's sarcoma, a cancer most often seen in bone, but that sometimes also occurs in soft tissue. I remember a quote of the odds of this being 1 in 100 million, given the rarity of bone cancers to begin with and that they usually occurred in children and adolescents, with cases in adults over 30 being very rare. The surgeon sounded pretty grave, saying it would need specialist treatment at one of the big national cancer centers. Thankfully, he was able to get me an appointment one week later at Sloan-Kettering in New York.
And so, I headed out to the Big Apple, with my parents and fiancee making the trip as well, to see what I were up against and to get treatment. The first doctor I saw was their chief orthopedic surgeon, who has many years of experience with bone cancer. He ordered many scans to check for spread. The scariest days were the ones between my diagnosis and when the scan results came in. I was fearing the worst, namely massive spread. Miraculously enough, there was no definitive spread found outside the 6 bone tumors. Surgical removal of all the tumors was possible given their location, but it would require amputation of my left leg below the knee. The Sloan-Kettering pathologists were also able to confirm that my cancer was in fact Ewing's sarcoma.
It would have been nice if surgery was all that was necessary, but that was not the case. The day before my operation, I saw the head of Sloan-Kettering's pediatric sarcoma team. Yes, pediatric. That is the team that treats Ewing's sarcoma at Sloan-Kettering given its prevalence in children. The thought of being a 31 year old pediatrics patient was strange at first, but not to worry, I was told -- his team has seen even older patients. I would need a lot of chemo in addition to the surgery to ensure that there would be no recurrence of the cancer, and to eliminate any currently undetectable spread of the existing cancer, which I was told was a distinct possibility.
The surgery itself went smoothly. I had in fact had a recurrence of intense cancer pain the day before, so I was in a quite unique position of being in less pain after surgery than before it (the post-surgery painkillers were of course necessary to ensure that, but even so, pain was not a big issue for me post-surgery in spite of pain being the most frequent thing I was asked about by the doctors and nurses). After 5 nights in the hospital, I was done, and set to start chemo the week after my discharge. That's what I'm in the midst of now, just about to start the third of 17 cycles of treatment. I'll be writing in detail about that shortly. It's by far been and will continue to be the most intense part of my treatment, and will naturally get a lot of attention. Other things I'll talk about are life as an amputee, the long road to running again (yes, that's my goal; good thing there are advanced prostheses these days!), and balancing the remainder of my Ph.D. program with cancer treatments. Though this is going to be a long battle, I am in it for the long haul, here to fight it and win while still living my life.
Released from the hospital after surgery. First of hopefully many victories. |
Subscribe to:
Posts (Atom)