Week 3, Cycle 13

As I write this evening, I have but one more day until I'm back on chemo. That third week really went by fast. I started off on a high note with my 5K last Saturday. The course was two times around a loop along the south half of Central Park. Though it took a while to walk it all (an hour and 20 minutes to be exact), I did it without using my cane. It was the longest I have walked to date without it. I was not alone either. My parents walked with me too. So did one of the nurses who gives me chemo, Janelle, and her husband. Thank you for walking with me, and thank you to all of you who supported my walk with donations or kind words of support. Here's me doing the victory pose at the end of the walk:

From the next day onwards, though, things took a bit of a wrong turn. I started having diarrhea. As I've said before, this is the most significant side effect of irinotecan. There is a protocol we're given to follow if it happens. Take two 2 mg tablets of Immodium, and then take one tablet every two hours until it's under control, with a maximum of eight tablets in 24 hours. This is actually twice the maximum daily dose on the bottle. I have had instances of diarrhea in past irinotecan/temozolomide cycles that Immodium has almost always been able to control. This time around, while Immodium would give me a day's relief, the diarrhea would come back and I'd have to repeat the process. The culprit was found via stool test when I went in for my blood counts on Tuesday, and it was not irinotecan. My C. diff infection from the previous cycle was back. As I had an immune system this time around, there was no fever and hospitalization, but it was back to the antibiotics nonetheless. The specific one used here is called Flagyl; if I get another recurrence, I'll get the stronger vancomycin. Happily, the diarrhea is now under control. Hopefully, this is the last time I deal with C. diff, but I do worry about what will happen in cycle 15 when I'll once again get chemo that knocks out my immune system.

Ashley is now visiting. So far, we've done some wedding planning, gone out for walks, and painted pictures. That last item is something I'm going to get back to once I paint something I deem worthy of posting here; I was never much into painting before, but then the exhibit I saw at the MOMA before cycle 12 proved to be an inspiration. Ashley is a gifted artist, and she's helping to train me :)

We'll be going out again tomorrow, and then the next day, she has to go back to work and I have to go back to chemo. I am most definitely looking forward to being married to Ashley instead of chemo. Just 4 more cycles now, time to finish strong!

First Post-Amputation 5K

Since high school, running has been my favorite form of physical activity. I was actually in the process of getting myself into shape for running races when my symptoms struck, which was actually a year and a week ago to this day.

I still plan on running a race one day, and while I'm still far from that point, I will be taking an important step in that direction this Saturday, when I'll be walking in the Terry Fox Run New York, a 5K fundraiser for cancer research at Sloan-Kettering. My team's name is the Chemo Warriors.

The run is named after Terry Fox, a young Canadian who in 1977 had his right leg amputated above the knee due to osteosarcoma, another form of bone cancer. In 1980, he embarked on a cross-Canada run to raise money for cancer research, running a marathon a day. His journey lasted over 3000 miles, and was sadly cut short when his cancer recurred and ultimately claimed his life. His legacy, however, remains, with Terry Fox runs now being held worldwide to raise funds for cancer research.

I first read about Terry's story early on in the course of my treatment, when I found myself looking up stories of other bone cancer patients online. His determination and dedication made a big impression on me, and thus when the opportunity to participate in a Terry Fox run first came up, I made it a rehab goal. I look forward to a great walk this Saturday, and eventually, my first post-amputation run.

Another Long Break

Another long break between posts! Certainly did not intend for this to happen again, but in spite of being a computer scientist, I seem to have a limited number of keystrokes in me, and I was most recently concentrating them towards an upcoming paper deadline. I've made progress, but also had a couple of setbacks. At this point, I'm going to back off and make sure I do a good job rather than a hasty one, especially since my work push induced a nice chemo crash the last half of last week where I slept most of Wednesday, half of Thursday, and a good bit of Friday as well. There are going to be other paper deadlines that I can send a better paper to than I would be able to send to this one.

I'm in the midst of cycle 13, another one with the combination of irinotecan and temozolomide. Last time I checked in, I was beginning the third week of cycle 12, clear of the neutropenia period. I began that week with hair, as you can see here. It had started to regrow at the end of cycle 11, but fell out starting the afternoon of the day after I left the hospital.

Another event of note that happened during that week was that I had a height adjustment made to my prosthesis. Back in September, when Ashley and I went to the zoo and did our height comparison, I commented that I was slouching a bit in the picture I posted, but I subsequently noticed that I was standing shorter than usual because my right leg felt a little longer than my left one. At my most recent followup with my prosthetist, he noticed that the disparity was affecting my walk, and made an adjustment that fixed it. The effects became really apparent this past Sunday when I made a trip to the Macy's downtown to return a couple of items I'd bought from them online. The stairs I had to take to get into and out of subway stations were suddenly a lot easier to navigate. It's not like the height adjustment was all that much. Maybe it was half an inch at most. But then I thought of the opening scene from the Big Bang Theory, where Sheldon Cooper talked about the effects of a stair being off by as little as 2 millimeters, and it suddenly all made sense!

So far, taking things easier has helped me greatly this week. My energy has been better, and unlike the long naps I took last week, one I took this afternoon actually made me feel less tired! Here's hoping that keeps up. I wouldn't mind a nice bust of energy next week, not just for work, but also so that can fully enjoy a visit from Ashley at its conclusion!

Back in Action

I was discharged from the hospital last night. I almost thought it wouldn't happen until today because my morning white blood cell counts weren't high enough, but I got another count check at dinnertime, and those turned out to be high enough. So now that makes it the Saturday of week 2 that I've been discharged for every in-chemo hospitalization. I also avoided the need for any blood products this time, though my platelets came very close to falling below the transfusion threshold.

I've since spent the time since mostly taking it easy. I'll need the energy for the coming week. If I'm going to get something done in time for that mid-October paper deadline I mentioned earlier, this is the week to get the important stuff done. Time to make it happen.

Infection

Preventing infection is important during chemo. Fighting cancer is enough of a strain on your body. Every additional condition that needs treatment is something other than cancer you have to throw resources at. Infection prevention is most important, though, during chemo cycles that wipe out your immune system. The last thing you want is the combination of an infection with no immune system to fight it.

However, even with your best efforts, if your immune system is wiped out long enough, you're bound to get something. This happened to me during cycles 3, 6, and 9. Each time, there was a very short hospital stay involved, with antibiotics given by IV. Cultures were taken as well, but nothing grew in them, so if there was a bacterial cause, it was not found.

This time around, it was a little different. Once again, germophobia didn't save me, but this time, I was quicker to develop an infection, and something grew in one of the cultures. It all started just a couple of days ago. In the morning, I felt almost entirely fine, except for being a little tired. But late in the afternoon, I started feeling weak, and my head felt warm to the touch. Sure enough, I had a fever, and it was off to the hospital. And it took some time to get under control -- by the evening, my temperature was at a whopping 40.3 C (104.5 F), a record for me. At that point, my head felt like it was burning up, and I felt overall just drained, enough to ask for a wheelchair to take me from the urgent care unit to my hospital room. This even though I'm one who insists on not wasting a chance to walk, knowing how I can't take it for granted now.

After enough Tylenol, my temperature finally started coming down during the night, and sometimes dipped below the fever threshold of 38 C the next day, but would come back up after the effects of the Tylenol wore off. I felt quite drained, without much of an appetite, and nodded off for much of the day. The blood cultures that are taken each time I come in for fever during low immunity week didn't grow anything, but a stool culture found the infection -- Clostridium difficile, commonly known as C. diff. It is known to often cause diarrhea, though this was absent in my case. This discovery has me on a specific 10 day antibiotic regimen, and my getting a single room so I wouldn't infect a roommate in the double room that the typical hospital patient gets. Thankfully, the antibiotic regimen is oral. If one of the blood cultures had grown something, the 10 day regimen would have been intravenous, keeping me here for quite a while.

Now I'd mentioned earlier that germophobia didn't save me. I don't think the source was from outside my body either, which means I gave this to myself! As to why it was C. diff -- I remember Dr. Wexler once saying that suprax, the antibiotic used to control diarrhea when getting irinotecan, causes C. diff diarrhea in some patients. And I've had plenty of that, plus another antibiotic, bactrim, for pneumonia prevention, during my treatment. I was also given plenty of IV antibiotics during previous hospital stays. I'm guessing all of those antibiotics left more and more room for C. diff in my intestines, and when there was enough, and my immunity was low, along came the infection. Ok, so I'm not a doctor, but this seems to make sense to me at least.

I'm still in the hospital now, waiting for my white blood cell counts to rebound. I haven't had a recurrence of fever since 6am this morning, and this is without Tylenol, so at least that part is currently under control. I might need platelets or blood depending on how low my other blood counts get, but they so far have not gotten that low. If my blood counts follow the pattern of cycles 6 and 9, I'll be out of here on Saturday, though I won't count my chickens before they hatch with all the chemo I've gotten!

Two-Thirds Done!

The beginning of this week marks the two-thirds point of my chemo regimen, and the end of my treatments with ifosfamide and etoposide. Once I recover from this cycle, only one more of the "bag"cycles remains, #15, a return to the harsh cyclophosphamide/doxorubicin/vincristine combo. I expect that one to be a brutal cycle after all the chemo I've received so far. At least that one is not until November.

I would say that this cycle has so far been my easiest with ifosfamide and etoposide, though there are still two weeks of recovery to go, and this week is low immunity week where I have to watch out for infection. The last three bag cycles have all necessitated hospital stays that were thankfully brief; I'm hoping I can avoid it this time, but maybe it's inevitable now. Even in cycle #2, I got a high enough fever to warrant admission, but my blood counts had bounced back by then, and I was showing only cold symptoms, so I didn't have to go in. That would make it just one bag cycle without illness, my very first.

The key might have been a small adjustment in my anti-nausea regimen. The last two bag cycles, I was taking the medications around the clock during the first week and tapering during the weekend. This time, I skipped my nighttime doses of hydroxyzine and lorazepam (1 dose for each medicine), to let me sleep a bit more. I did get a slight bit of queasiness doing this at times, but I had more energy, enough to even work a bit on my code. I even found and squashed a bug that had been troubling me! The majority of my time, however, was spent lying down getting rest or outright sleeping. I then tapered off the medicines sooner, going with only ondansetron on Saturday and nothing yesterday. Again, I had a bit of queasiness at times, but I overall felt better, and even went for a nice walk yesterday, making it out to the West Side. Walked all the way to 72nd and Central Park West, without using my cane, before using it on the way back.

Now, time to recover and then try and hopefully power through some work. There's a mid-October conference paper deadline I'd like to have something for. It won't be easy, but deadlines have a way of igniting some big spurts in me, so I'll give it my all.

Scans, and the Beginning of Cycle 12

I was hoping I'd be more productive with blogging this past week, while I was feeling good, but it ended up being a busy one that kept me away from the keyboard... Well, not entirely. I worked on code for my Ph.D. work, which involved heavy keyboard use, but those were keystrokes I couldn't use for blogging.

The first big event of the week was scans. As usual, I had a PET scan and a CT scan of my chest. I didn't mention this yet, but each time I get a PET scan, I get this card that says I had a procedure performed at Sloan-Kettering. The NYPD has radiation detectors set up around the city to sniff out dirty bombs, and the radioactive sugar used in the PET scan leaves me slightly radioactive through the end of the next day, enough so to potentially set one of them off. I have to steer clear of pregnant women and infants during that time for this same reason.

Like the prior two I had, the PET scan showed no evidence of tumors anywhere! Here's hoping that continues. The lung spots that have been showing up in my chest CT scan have remained stable; when we met with Dr. Meyers to discuss the results, I asked about where things. He said that at some point there will be a big discussion that will include the surgeon and the radiation oncologist who would perform any surgery or handle radiation treatment, and the likely recommendation would be what we thought was going to happen back in March, that I would get radiation to the lungs to take care of any cancer cells that are there that the chemo didn't get. An important point he made was that regardless of what the spots specifically are, there's almost always some cancer in the lungs of every Ewing's patient. Before chemo, most patients with apparently localized disease would suffer a relapse there after treatment of the primary tumor. With my spots not definitively showing one way or the other, I do want some form of extra treatment directed at them in case any of them are tumors.

The second big event was that Ashley came for a visit! She arrived Thursday evening, just in time to hear the scan results with the rest of us the next morning. Then we spent the rest of the weekend out and about . On Friday afternoon, we went to the MOMA (Museum of Modern Art). We spent most of our time in a special exhibit about the architect Le Corbusier on the top floor, and then browsed some of the permanent collection. The highlight item was Van Gogh's "Starry Night". I was hoping to see Dali's "The Persistence of Memory" (a.k.a. the famous painting with the melting watches) as well, but it was on loan to a museum in Spain. Hopefully it's back before I'm done here.

On Saturday, we went to the Bronx Zoo. It's really big, with many exhibits. We saw bison, many kinds of birds, tigers, bears, baboons, giraffes, gorillas, and much more. Here are Ashley and I comparing our heights to that of a reaching tiger. I'm slouching a bit, while she's standing on her toes, but still, you can see that one of us is vertically challenged while the other is vertically endowed:

Then today, we went to Long Beach. No, not the city all the way out in California. There's actually a Long Beach, New York as well. It's a small beach community on Long Island, accessible by taking the Long Island Railroad. This was nice, to get out of the city for once. There was no escape from crowds though, as there were plenty of beachgoers, though it was nothing like the crowds in the city itself.

Tomorrow, Ashley heads back to work, while I begin cycle #12, my last with ifosfamide and etoposide. After this one, it'll feel like the homestretch, with only one more of those "bag" cycles left (a final round of cyclophosphamide/doxorubicin/vincristine). I think the light at the end of the tunnel is finally coming into view!