Rejoining the Research Community

Today, I started cycle 8, another one combining irinotecan and temozolomide. I was expecting to feel tired this afternoon like last cycle. No, I don't feel 100%, but strangely, I have yet to feel the need to take a nap. More energy is a good thing; let's see if it lasts.

Today, though, I'm not going to write about chemo, but about an experience I had right before cycle 7. In my very first post, I mentioned that one of the subjects of my blog would be balancing what remains of my Ph.D. program with cancer treatments. This has proven to be very difficult. Fatigue from chemo is a significant issue. Adding rehab exercises on top of that takes a further bite out of my energy. Basically, the only guaranteed time there is where I can be productive are those third weeks when I'm feeling better, but oftentimes my energy level isn't back to normal until it's almost the weekend before I have to get chemo again.

Nonetheless, I've made progress. I had a couple of conference talks I was originally scheduled to give, one in Boston on February 25th, and another at the Copper Mountain ski resort in Colorado on March 19th. Both were during good weeks. However, I had yet to receive a prosthesis at the time of the Boston talk, and the Colorado talk was in a location far from a major medical facility in case something went wrong. Thankfully, one of my collaborators was at both conferences and able to give the talks in my place. However, I still was able to write the slides for both of them, which I did during the good weeks preceding each conference. I've also been able to add to my thesis bit by bit when I get the time and energy.

The biggest thing I was able to do occurred the Friday before Memorial Day. I had some work I'd gotten done last year that I still needed to publish. Between my diagnosis and my amputation, I was able to put together a paper, which my collaborators finished off and submitted as I was recovering in the hospital. The paper was submitted to a workshop on Large-Scale Parallel Processing that was held in Cambridge, MA on May 24th. The acceptance came in mid-February, and we had until the end of the month to send in the final paper. Thankfully, I had a good week where I could work on the paper, and was able to do the heavy lifting to get it done.

The trip itself was very energizing. My energy level was already high, as it was at the end of the third week of cycle 6. I used the Amtrak Northeast Regional to get there and back; it was about a 4 hour ride on the train. The trickiest thing was actually when I had to walk to the bathroom; it's not like the train was very shaky (it certainly didn't feel that way while I was seated), but while walking, all those inevitable little movements made me have to move very deliberately on my prosthetic leg. Ashley accompanied me during the trip, and having company was indispensable for this, my first trip out of New York since coming here for treatment.

The day of the workshop itself was a great, great day. I caught up with two of my collaborators, other researchers I knew, and was able to give a talk myself for a change. I was a bit rusty on a couple of occasions, but overall it went smoothly. The biggest thing of all, though, was a huge surge in my mental energy. I was suddenly getting a multitude of ideas for my research, and writing them down in my notebook. I always keep one for when I get ideas, and chemo has made me write in it far less often than I used to, but on the day of the workshop, I was on a tear. That made me feel great, and I came into cycle 7 with all sorts of plans and ideas on what I could get done. And then the chemo hit.

Here's a picture of my name tag from the workshop. A note to my Boston-based friends and followers: this was a brief work trip, so I'm sorry I couldn't see all of you. I don't know if I'll be up there again, but hopefully if I am I'll have more time during those trips.

Chemo Fatigue and Humidity: a Bad Combination

Before this whole cancer odyssey started, I was someone who could not sit still. I would always want to get up and move around. Those impulses are still there now, but being an amputee with frequent bouts of chemo-induced fatigue often gets in their way.

This afternoon, though, I had to get out and move. Since before cycle 7 started, in fact, I was determined to have some kind of outing on the one free day between chemo administrations. The thought of two weeks of nothing but treatment and rest did not make me feel good in the least. So even though I was still quite fatigued, and even though it was very humid outside, Ashley and I went out to Central Park. And I tell you -- even though clouds covered the sun, and there was a lot of shade, I got drained. Fast. I sweated a lot. Sweat on the amputated leg interfered with the fit of my prosthesis. I drained the water bottles I brought with me, and then proceeded to drink a bunch of water and Gatorade upon getting back. That helped, but I was still feeling quite tired from being outside. My appetite wasn't quite there either, limiting what I could have at dinner.

As someone who once went out for runs in humid central Illinois heat on a regular basis, it was a big disappointment to be so readily felled by humid summer weather that I once would have handled easily. But still, thinking back, I would have felt worse had I stayed inside. Maybe my body would have felt better, but my mind would have gone mad. And this is one of the things that keeps me going. As bad as things feel at times, I want to feel like I did when I was healthy and do those same things again, and it's not going to happen if I just sit back and do nothing.

More Chemo Drain

The rest of this first week of cycle 7 proceeded smoothly, though once again with more bouts of fatigue. I had to miss my Friday physical therapy session because I was just about falling asleep in the clinic right after lunch. I slept most of the afternoon, and went to bed early, which gave me more energy for yesterday's chemo administration. I had a better afternoon, but I once again got tired after lunch and needed a nap. I feel weakened now but otherwise ok; hopefully I have a good day today before my next week of chemo administration. At least this one will be only irinotecan, so if things follow my experiences from cycles 4 and 5, I shouldn't be so drained.

With 10 more cycles to go, though, I do wonder about cumulative effects, as the irinotecan/temozolomide combo hadn't hit me this hard the first two times around. It was similar with the cyclophosphamide/doxorubicin/vincristine cycles I had early on. The third one was much harder on me than the first two. But, I need to soldier on. Both Dr. Healey and Dr. Meyers told me before starting treatment that in the old days, before chemo, you would cut out a cancer like Ewing's and hope for the best, but odds were that it would come back and you would get the worst. So, here I am. And even though it's tough, and far from home, I'm happy I'm getting treatment where I am, and from pediatric specialists at that. Here's an interesting clip I found from the CBS Evening News. In it, Dr. Meyers talks about gains made in treating cancer in children. The point he emphasizes is that children have done less damage to their bodies than adults and can thus endure more intense treatments:


Well, I'm not a child, but if I'm getting the same treatments they do, I'd say that should help matters. And fellow adults, here's a reminder to keep yourselves healthy. Chemo is harsh, and you don't want to set yourselves back if you need it.

It's been a while...

The days can go by so fast sometimes during treatment, and now I see it's been almost 3 weeks since my last post! Well, to be more specific, it's the days when I'm not getting chemo that go by more quickly. How unfortunate; those are the days I want to last longer!

I'm currently in the first week of cycle 7 and feeling quite tired. It first hit on Tuesday (treatment started then and ends Saturday this week due to the Memorial Day holiday). It's another irinotecan/temozolomide cycle, like cycles 4 and 5. I would get bouts of fatigue during those cycles too, most often during the first week when I'd get both drugs, but I have been feeling very tired this week. I took a long nap Tuesday afternoon and then couldn't sleep well at night. On Wednesday, I was able to make it through physical therapy ok, and didn't feel too sleepy, but then yesterday, I slept while getting chemo, and right after lunch too. This morning, I'm a little better, but still tired.

So, now to get to what happened between the end of the ifosfamide/etoposide treatment of cycle 6 and now... I'd last reported that I was feeling less drained than expected. As true as it was, all it meant was that the crash was delayed. It wasn't a ginormous crash, but it was enough to make me miss a session of physical therapy. This mirrored my blood counts, which had their drop during the latter part of the week. Though I was hoping to make it to my brother's med school graduation in Virginia with my family during the ensuing weekend, I instead spiked a fever on Friday night and was in the hospital. I was thankfully in there only for one evening, but I was still tired, and I stayed back with my uncle who was visiting while my parents made the trip south. We were all hoping to make the trip together, but sometimes things don't work out like you hope...

The scans I was expecting during the third week of cycle 6 actually won't be happening until June 12; the every 3 cycles I thought it was going to be was only after the first 3. After those, the interval is roughly every 3 months. The Tuesday of this week, Ashley arrived for a visit and has been with me since, accompanying me on a brief trip that I will have to talk about in another post to keep this one from being too long. Also a feature of that week: the hair on my head and face fell out once again, and now I'm back to the very unhairy state I was in since the end of cycle 1.

More posts will come as my energy allows, so stay tuned!

Drained, But Less Than Expected

It seemed like forever, but after 5 days of ifosfamide, etoposide, and IV fluids round the clock, I am finally through the chemo part of cycle 6. Now the recovery begins. I feel quite drained right now, but pleasantly surprised by the amount of energy I do have -- I was expecting to feel a lot worse, like the crash weekends I had during my first three cycles. I have had to lie down and rest quite a bit, yes, but not for the entire day.

I must emphasize that I was expecting to feel a lot worse. Cyclophosphamide, a drug related to ifosfamide, did a number of me during the first three cycles. But that wasn't the only "tough" drug in there -- when I'd mentioned the side effects doxorubicin before, I focused on the risk of heart damage, but it is also a potent nausea inducer. Etoposide is not a big nausea inducer, so I had that going for me. Still, I needed the fluids to keep flushing my bladder like I did for cyclophosphamide during the first three cycles, and that was of course no fun.

As for nausea, it started to kick in Monday afternoon during my first dose of ifosfamide, but thankfully a very aggressive course of anti-nausea meds beat it back. And I mean aggressive. As soon as one wore off, time for another. There are actually four total anti-nausea meds that can be used during treatment, three that I have at my disposal in pill form. The one I don't have is dexamethasone, a steroid. I get that by IV in the clinic. Funny thing -- a skier received a 2 year ban for using it as a performance-enhancer. Well, if it takes steroids to beat cancer, so be it. Though before anyone thinks I'm going to turn into one of those hulked-up athletes, dexamethasone is not that kind of steroid. The others I have available as pills are ondansetron, hydroxyzine, and lorazepam. Lorazepam I'd mentioned in a previous post; it addresses "anticipatory" nausea (i.e. you get nauseous thinking about food). Hydroxyzine targets motion-sickness style nausea. Ondansetron is a general-purpose anti-nausea medicine. At the clinic, I get these by IV, and take pills when I'm out.

With medicine schedule in hand, getting the needed IVs during the day and waking up at prescribed times for pills at night, I hardly ever felt nauseous. But there was a catch. Lorazepam and hydroxyzine cause drowsiness, and lorazepam has made my brain "crash" before (cycle 4). Continually taking them left me in a zombie-like state for much of each day. I'd be in a fog upon waking up, which would clear a bit by mid-morning, and I'd have some useful brain functionality until after lunch. Then, it was a slow descent back into the fog, which of course reached its worst at bedtime. But I could actually eat decent amounts of food without feeling sick! So yes, I'll take being a zombie over being nauseous. I was in a fog much of today too.

I'll start backing off the meds a bit tomorrow; hopefully, I will recover quickly to a more normal state. Now I have to brace for the period of very low immunity that comes over the next few days and do my best not to get sick. My rehab and other plans for this month depend on it. I'm doing my best to be careful, taking inspiration from noted television germophobe Sheldon Cooper. I find myself reaching for the Purell a lot these days as well...

Cycle 5 in Pictures

As I said yesterday, I began cycle 6, but I'd like to take this moment to share a few pictures from cycle 5 that show some of what went on. First one is of me in the clinic during week 1. For effect, I'm wearing my prosthetic leg turned sideways. Also to note is that while I've lost a good bit of hair, my mustache and some of the hair on my chin had begun to grow back:

Fast forward to the end of the cycle, and that hair has become rich and full, and the rest of my hair has started to come back as well. Facial hair, head hair, eyebrows, eyelashes, body hair... This cycle 6 will likely knock it out again, but I'm enjoying it while I still have it. Here's me on Sunday posing in front of the new 1 World Trade Center tower currently under construction:

Now, I'd mentioned before that the fit of the prosthetic leg is very much dependent on the prosthetic socks that go over my silicone sleeve. I have to carry socks with me wherever I go, as during the course of an outing, I might need to change the number I'm wearing. Here is a change of socks in action:

Finally, my nails have shown the signs of multiple rounds of chemo. This is something Dr. Meyers, the head of the sarcoma team, told me I would see. Perfectly normal, like tree rings actually. I can see four bands, and I had four cycles before this one:

Cycle 6 Begins

Last time I checked in, I was in the first week of cycle 5. Now, it's cycle 6, with irinotecan and temozolomide replaced by ifosfamide and etoposide. I had the etoposide go in before lunch. It took about an hour. My nurse told me it does not have many side effects outside of hair loss and immune system suppression. Now I have a bag of ifosfamide dripping into my veins. I feel a bit queasy but otherwise fine right now, but I know that its side effects will eventually kick in, and cause a number of the same problems I was reporting when I was getting cyclophosphamide. Hopefully since I'm getting just two drugs instead of the three from cycles 1-3, I won't feel as bad as I did during those cycles. I will get the drugs today through Friday. Week 2 will be spent resting and waiting for my blood counts to recover. During week 3, I'll get more scans to see where I'm at.

To recap cycle 5 developments: I was still focused on rehab, with 2x/week physical therapy plus exercises outside of it. One morning, when I was getting chemo, I was using one of the grab bars in the clinic to do a couple of my exercises, and a doctor and a nurse both asked if I was ok and needed help (they thought I was having a lot of trouble moving). I had to explain that I was doing physical therapy, and not struggling to get back to my seat. I paid a couple of visits to the prosthetist for more adjustments. The feeling of tightness at the top and the associated discomfort are gone, and now the only problems I'm having are at the bottom of my left leg. I feel discomfort and pressure there when I walk, presumably from movement of the limb within the socket. Hopefully, more adjustments will be able to fix this. Even with the discomfort issues, I'm still progressing very well with my walking. I'm now using one crutch rather than two to go places. This included a subway ride and a trip to lower Manhattan yesterday. My physical therapist might move me to a cane next week. Outside of rehab, things were smooth until 8 days ago, when I got sick, in spite of the chemo cycle not destroying my immune system. Make it now 3 of the first 5 cycles where I've come down with an illness of some kind. Minor each time, but still a nuisance. This time, I was nauseous and able to eat very little for most of the day, and slept most of the time from late afternoon until the next morning. Then I had a bout of diarrhea that lasted into the following morning. Was it the illness or the irinotecan? I don't think I'll have an answer, but per procedure while in an irinotecan cycle, I came into the clinic, where I received IV fluids. Thankfully, the diarrhea resolved while I was there.

Hopefully cycle 6 is not too hard on me; I'm hoping to actually get out of New York a couple of times during my recovery period. Haven't left since the day I got here, and while New York is a big city with a lot going on, my world has still felt very small since I began treatment. The subway ride felt great; I'm sure travel outside of New York will too. My ability to travel will all depend on my immune system bouncing back in a timely manner after it takes a hit from the chemo drugs, so I hope that happens!