Another Hospital Trip

Well, it happened again, as hard as I tried to avoid it. A little after 3am Friday morning, I woke up with a fever and a throbbing pain in my pelvis. As my white blood cell counts were still very low, it was another trip to the hospital, where I got regular doses of antibiotics until my counts recovered to a sufficient level and I went at least 24 hours without fever. Thankfully, there was no serious infection brewing -- I had no recurrence of fever, and on Saturday morning my counts were good enough that I was discharged in the afternoon, but not before I got a platelet transfusion -- those had dropped to a very low level. The pelvis pain was mostly gone by then as well. The likely explanation is that it was my bone marrow working hard to produce white blood cells. I had some pelvis pain when I was hospitalized during cycle 6, and one of the doctors told me that this sometimes happens as a result of the shot I get at the end of the "bag" chemo administrations to stimulate my bone marrow to produce white blood cells so my immune system recovers more quickly.

This turned out to be the first time I had an allergic reaction to something medical. When I got blood and platelets in the pediatric day hospital (the clinical unit where I get my chemo) during cycle 3, I was given Tylenol and Benadryl beforehand to prevent a potential reaction (a spike in temperature or a rash). This was also the case the prior time I received blood in the hospital (one of the nights I was inpatient during cycle 3). For this platelet transfusion, though, I was not given the premedication because I had not displayed a reaction before -- I'm guessing this was the protocol on the inpatient side. Everything was going well, and then I felt itchiness in my eyes. My right eyelid swelled up noticeably. I also had redness on my arms and legs, and a spot on my left forearm that looked like a bug bite. I called for my nurse, who gave me Benadryl, and later, prednisone, after consultation with the attending physician. I'm happy to report that the "bug bite" went away quickly, and the eye swelling is almost completely gone.

Today, I went on a walk to Central Park in the morning using only my cane for support, and have spent the rest of the day taking it easy. Happily, the walk went very smoothly. It was not as effortless as it was in the video I recently posted, but as I said before, there are ups and downs. This week, I have a number of appointments coming up -- a follow-up with Dr. Healey tomorrow, a blood count check either tomorrow or Tuesday, physical therapy Wednesday and Friday, and a follow-up with my prosthetist on Thursday. Like all of the "good" weeks, I expect it to go by quickly. And then I will get some more chemo.

An Ode to the Squat

Throughout my recovery, my favorite physical therapy exercise has been the squat. My physical therapist is a big advocate, and she was happy when she heard I'm a fellow believer. I actually wish I'd been a believer sooner. In my case, it started in mid-May of last year. I wanted to really make a good effort to run regularly, and in my first few, my legs would start feeling sore and tired before I even hit 30 minutes, which used to be a short run for me. I then decided to put the running aside for a moment and build some strength in my legs with a dedicated squat program, when in the past I was more into leg extension, leg curl, and leg press. Squats are a free weight exercise; the others use machines. I went into the weight room three times a week, and made sure I did a couple of sets of squats each time. I didn't put all that much weight on the bar, but not having done free weight squats before, I felt myself getting a workout.

At the beginning of August, I resumed running again, and the difference was remarkable. When in the past, I would get sore legs shy of 30 minutes, I went 48 minutes without feeling the same degree of leg soreness. Later runs would see me going over 50 minutes sometimes. It was definitely a great feeling. I kept up my running regularly, going 3x/week in most weeks. I began to see myself trying out a race or two the coming fall. And then, the bone pains that began the following October derailed my plans.

After my amputation, I received a variety of physical therapy exercises to strengthen my legs so I would be able to walk again with a prosthesis. The first few involved doing stretches, leg extensions, leg curls, and leg raises on my bed. I later got swaying and sidestepping exercises to enable me to transition to walking when I got my first prosthesis, and other exercises to strengthen my glutes when I made the discovery that I needed them to really power my left leg well. At that point, I got reintroduced to the squat. At first, I was to do them with my hands holding onto a grab bar or similar support. Later, I graduated to doing the squats without grabbing onto anything, but while still having a chair behind me. I still have the chair behind me as an anti-fall measure, but I can now do squats without any supports there or nearby as well.

I can't argue with the results. Though I've always wished things could be progressing faster, my doctors have actually all been happy with my progress, telling me that many patients move a lot more slowly. Last night, I had a stretch where I actually felt like I was walking naturally for the first time since before my biopsy. I was feeling so good, I ditched the cane for that stretch so I could experience the full joy of natural walking. My motion felt completely fluid, without me worrying about something happening each time I pushed off my left leg. I didn't feel pain or pressure in the prosthesis either. I'm not like this most days. In fact, last night was the first time it was that good. I'm sure I'll have more downs too as well as ups, but this was a huge step forward in my rehabilitation. I made sure to save the moment in video:

Passed the Halfway Point

Today marks the day I passed the halfway point of chemo. 8.5 cycles down, 8.5 cycles to go. Hopefully, it's smooth sailing through the second half. Once encouraging bit is that most of the bag cycles are already done. 4.5 of them in the first half, with only 2.5 to go in the second half. There are still other potential treatments, depending on the nature of the lung spots that showed up on my CT scans. But the decision there involves something other than chemo.

I have felt surprisingly good most of the week, though now I've started to lose energy and feel a bit off. I had a delayed crash during cycle 6 as well. We'll see where the blood counts are tomorrow morning. When they were last checked (Tuesday morning), my red blood cells, hemoglobin, and platelets were all low, but not at the point where a transfusion was needed. My white blood cell count was very low, to the point where any sign of infection sends me to the hospital. Haven't had to go there yet...

Thanks to everyone who has shown support and cheered for me throughout my journey. We're not done yet, but we have passed an important milestone. Now, onto the next one.

Almost Halfway Through

This past week was the chemo administration for cycle 9. In terms of side effects, it felt similar to my previous ifosfamide/etoposide cycle. I was again able to keep nausea at bay and maintain a decent appetite throughout thanks to round-the-clock anti-nausea meds, at the cost of feeling like a zombie for most of the day. Though this time, I didn't feel as zombified as I did during cycle 6.

I'll officially be halfway done with chemo midway through the coming week. To try and speed up the countdown, I'm doing it in terms of how many of the very draining cycles that will kill my immune system and require constant IV hydration I have left. I call them "bag cycles" because of the constant need to be connected to a fluid bag. After this one, I'll have just two left: one more ifosfamide/etoposide (cycle 12), and one more cyclophosphamide/doxorubicin/vincristine (cycle 15). The day I'll be done is still far away, but drawing closer and closer.

So now I'll share an interesting little detail about the ifosfamide/etoposide cycles. I get my chemo through an IV port that was implanted in me at the same time as my amputation. This is because a normal IV that's just stuck into a vein through the skin is not durable enough for continuous weeklong administration of chemo and fluids. Before each administration, a nurse "accesses" the port by pricking the skin over it with a special needle that is attached to tubing through which medicine can be sent in. The port is then "flushed" with an injection of saline solution (0.9% sodium chloride in water), after which, medicine can be given through it.

My port has two openings for access. During an irinotecan/temozolomide cycle, only one of them is accessed, but both of them are for the bag cycles, as I need more medicines then. Here is a picture of my port from my most recent cycle, double accessed:

Most of the time, a nurse "de-accesses" the port when I don't need it accessed anymore. This involves flushing with saline, and then injecting it with heparin. Once this is done, the dressing can be removed, and the needle(s) can be pulled out. However, with an ifosfamide/etoposide cycle, the fluid administration lasts until Saturday mid-morning. So my parents and I received a lesson in de-accessing, along with the materials needed for the job. We got one during cycle 6, and another during the most recent cycle, as the design of the needles had changed a bit. Once my fluids ran out, it was time to self de-access. Here is me completing the task:

Now, on to low immunity week. Here's hoping I don't spike a fever and have to go to the hospital this time, like I did the last two cycles.

Time Flies When You're on Chemo!

Once again, it's been a while since my last post! Last time I checked in, I was a week through cycle 8. Now, I'm on the verge of starting cycle 9. I'll get hooked up in the morning, get flushed full of fluids, and then get the mix of ifosfamide and etoposide for the entire week. Hopefully, it goes (relatively) smoothly like cycle 6, minus the brief hospital stay. I accomplished something the last two cycles -- they were the first pair of consecutive cycles in which I did not get sick at all! Previously, I'd had isolated cycles with no illness, but never two in a row. In fact, out of my first 6 cycles, I was illness free for only cycles 1 and 4. The illnesses I had were always small things (a cold or a stomach bug), and only two of them required a hospital stay (the others occurred when my white blood cell counts were high enough to avoid it), but still, they were no fun.

I should say, though, that the time that really flies is when you're not getting the drugs and you feel well. Days where I don't have to go to the clinic and can either recover from chemo or do things when I have energy always go by the most quickly. Before you know it, it's time for another cycle! Now, if there were a way for the chemo administrations to go by as quickly...

Ashley visited again this past week, and we visited the American Museum of Natural History and the Metropolitan Museum of Art. Going to the museums enabled me to get my walking in without boiling outside (and sweating a lot in my prosthesis), as it's been hot and humid here the past week. I also saw some neat stuff. The natural history museum had a neat exhibit featuring live (in contrast to most of the animal exhibits, which featured skeletons or stuffed animal speciments) frogs ranging from bullfrogs to brightly colored poison dart frogs from the Amazon rainforest. The Metropolitan has a vast collection of items. I saw things ranging from paintings and sculptures to armor and old weapons. Highlights there for me there were the big painting of George Washington crossing the Delaware River and two items on loan for special exhibits: the Cyrus Cylinder from ancient Persia and a detailed bronze statue of a boxer from ancient Greece.

One more thing before I get back to the chemo, another milestone: my first sports activity! Yesterday, I played table tennis for the first time since before my cancer odyssey began last October. It was me versus my dad. We didn't keep score, just hit the ball around, but I still had to move and get it. My forwards/backwards movement was slowed down but ok. However, my side-to-side movement was very slow, so there were shots I was once able to reach that I couldn't yesterday. Still, it was a lot of fun, and I was able to get some good shots in of my own. I look forward to more games once I'm through this cycle.