Long Week

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!

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.

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 :)

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.

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.

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 :)

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.