Saturday, November 30, 2013

Crossing Chemos off the List

I'm currently recovering from the heavy-hitting chemo I received this week for cycle 15. Those nasty side effects I wrote about in my early blog entries are back. My throat hurts after the chemo killed the mucus and dried it out. My appetite has gone back to intense cravings for small meals heavy on protein. I've lost a number of my taste buds. I don't have much taste for bread. This all said, though, I could be feeling worse. The prior three times I received this chemo combination, I had a big crash and slept most of the weekend, but here I am this morning writing this post!

The medical explanation would be that the extra off week gave me more time to recover from my last cycle, but I would also credit something else -- the good feeling of crossing these chemos off the list! It started on Monday, which was my last dose of vincristine. Then on Tuesday, I got my last doses of doxorubicin and cyclophosphamide. On Thursday, I was disconnected from IV fluids, and with that, there was no more evening backpack.

My Monday doxorubicin dose. Harsh stuff. It's bright red color makes me think of the red button in all those childhood cartoons, where bad things happen after it gets pressed.
As good as it feels not to have to get any additional doses of the heavy-hitters, or constant IV fluids, I'm still far from done. First off, I have to get through my low immunity period. Then, I have two more cycles of irinotecan and temozolomide. But with no more heavy-hitters lined up, I am feeling this big rush of positive energy that the side effects have yet to make a dent in. Power through, power through, power through!

Tuesday, November 19, 2013

Delay #2

I was all set to start cycle 15 yesterday. But I awoke that morning with a fever and a sore throat. Chemo was put on hold, with the chance of starting Tuesday as I only needed to come to the clinic for four days for this cycle. When I wasn't getting better, and the results of a nose swab test came back confirming I'd caught a cold, chemo was postponed to next week.

Good news is that I'm feeling better than I was yesterday. The sore throat is gone, and while my nose is now running a bit, I don't feel as feverish or weak as I did yesterday, when I spent most of the day in bed resting. Though I'm not happy about being delayed, I do now have an opportunity to do more Ph.D. work and enjoy more food before I take the beating that cycle 15 will inevitably give me, so I'd best make the most of it.

Friday, November 15, 2013

Squat Update

No, squats aren't the only rehab exercise I do, but they're my favorite, so I'll be focusing on them here. I had started out doing body weight squats, first using a grab bar to support me, then over a chair in case I slip and fall. I still like to do them over a chair for safety, but now I've added some weight. Not a lot -- I may never be cleared to lift large amounts of weight again because of potential heart damage from doxorubicin, one of the chemo drugs I've received. This is definitely a drag; the weight room was one of my favorite places to work out before my diagnosis. But adding some weight still gives me some of that weight room feeling. In the case of squats, my physical therapist introduced a 2 kg medicine ball, which I hold in front of me with my arms fully extended, before my most recent cycle. Since I don't have my own personal supply of medicine balls, I've substituted my backpack, which I can fill to 2 kg or a bit more if I so desire.

I've made more strides recently. Yesterday and today, I went about my business without using my cane at all. Yesterday, this included walking to a follow-up with my prosthetist, plus then heading to Midtown on the subway to pick up a shirt I'd ordered online and then back to a Trader Joe's on the Upper West Side for groceries before calling it a day. I still take my cane with me even when I don't want to use it in case I get tired, but I'm going to go caneless now as much as I can. I'll still use my cane if my backpack is loaded up, though; going regularly without it while wearing my backpack can be my next step.

I shouldn't say it's just been squats. There are other exercises that have been important -- leg lifts, swaying, stretches, and balancing on my prosthetic leg are some of the other big ones -- but given my huge affinity for the squat that goes back to summer 2012, I'm going to talk it up as much as I can. Plus it provides a nice backdrop for this great video I recently saw and want to share. It's of a ticket machine in the Moscow subway that issues a subway ticket in exchange for 30 squats instead of the usual monetary payment. I wouldn't mind seeing a few of these pop up in New York! :)

Thursday, November 14, 2013

Making the Most of the Moment

I currently write in the midst of a good period, but sandwiched in between a bumpy end to cycle 14 and the start of cycle 15. I have a lot of energy right now. When I had my blood counts checked on Monday, my hemoglobin and red blood cell counts were higher than they've been in a long time. The former was in fact in the normal range (a rare occurrence), and the latter was just below normal.

I wish I could say that cycle 14 ended smoothly, but the day after I'd made my last post, my intestines acted up again. Was it the C diff, the irinotecan, or both? I'll never know for sure, but I have a feeling that the irinotecan played a big role, as this was my first time having to forgo the anti-diarrhea measures I usually take, with a noticeable difference in results compared to the cycle 13, which also featured a C diff return. It started with frequent trips to the bathroom on Friday morning. When I went in to get the cycle's last day of chemo, and brought this up, my chemo dose was canceled so as not to risk making things worse. And briefly, things got better. But then the next day, I got worse again, to the point where I was advised to go into urgent care that night. A check of my electrolyte levels thankfully revealed that I had not gotten to the point of being very dehydrated; I received a liter of fluid by IV to keep things that way and then was released. Sunday was another tough day, but by the evening things started to let up a bit. Gradual improvement continued the next two days. By Wednesday, it was all systems go, with me no longer worrying that bad things would happen during the afternoon's physical therapy session. So I expect no delays when it comes to starting cycle 15.

Speaking of that cycle, I know it's going to be a hard one. I've talked at length about the multitude of side effects the cyclophosphamide/doxorubicin/vincristine combo has given me back in the days of cycle 3, most notably nausea, mouth sores, and destroyed taste buds, and I'm expecting them to all come back. Given that, I've told myself that I need to make the most of these next few days before I start, while I still have energy... And my taste buds! Thinking back to how my taste for food got thrown for a loop by my first three cycles, I've made my number one task enjoying some of my favorite foods before my taste for them gets thrown off. One such item is cinnamon rolls; my first three cycles made cinnamon, whose flavor I normally very much like, taste unpalatably bitter. Thankfully, that taste change was not permanent, but it was no fun while it lasted. Another is cotlet. Cotlets are breaded and fried meat and potato patties that in Persian cuisine are commonly put in pita or some other flatbread and enjoyed as a sandwich. I was not very much into them until I invented a version in summer 2012 whose taste I really enjoy. Though protein-heavy foods are something that chemo does not make me lose my taste for, the thing with cotlet is that the presence of bread and potatoes complicates things. My first three cycles wiped out my taste for bread almost entirely, and potatoes I usually wanted only in mashed form. With that in mind, I made a batch of cotlets last night:


Along with a bowl of mast-o-khiar (another Persian dish, this one yogurt with cucumbers, raisins, walnuts, and a mix of herbs), this was my dinner, and it was very tasty. Over the next few days, I'll be eating, working on my thesis, and getting around New York some. I look forward to having cycle 15 behind me, after which the sailing will be a lot smoother.

Thursday, November 7, 2013

Marathon

The NYC Marathon men's lead pack at 73rd and 1st.
During my high school running days, marathons were naturally on the mind. I had a goal of eventually running in one. When I started having problems with my left foot during my college days, though, I put that aside and figured I'd keep my race distances capped at the 5K to 10K range, so as not to completely destroy my foot in blaze of glory.

This past Sunday was the New York City Marathon. The course went by where I was staying so I stepped out to watch the action. It was the first time I'd ever seen a marathon live, and my first time at a running race since the last one I ran, a 5K on July 4, 2008.

After my 7/4/08 race. So long ago now...
The feeling was energizing. I found myself wanting to get out and run myself. It was fun watching the leaders go by, but for me, the best part was seeing the runners further back in the pack. They were having fun. Some were playing to the crowd, raising their arms in the air, soliciting cheers. Others were high-fiving the fans standing next to the rails. Many were wearing some kind of homage to their country, their past running team, their present running team, or even costumes. The thought of doing that myself one day was certainly appealing. And now that there is no longer any offending foot to destroy, why not?

Playing to the crowd. Looks like fun :)
Chemo-wise, I have just one day of administration left for Cycle 14. Things have gone mainly smoothly, highlighted by a fun moment a week ago when the Pediatric unit had its Halloween celebration. Most of the doctors and nurses, and a lot of the patients, showed up in costumes. Candy was available in abundance. Embracing my being one of the older pediatrics patients, I came to receive my chemo dressed as Papa Smurf:

All decked out for chemo!
Energy-wise, I've done well, needing naps each afternoon, but not feeling the same level of tiredness I was during cycle 13. Unfortunately, though, it has not all been peaches and cream -- a bout of diarrhea yesterday morning turned out to be C diff recurrence #2. In response, I've had to stop all the standard anti-diarrhea measures for irinotecan (Suprax and activated charcoal), and begin a 10 day course of vancomycin. Furthermore, I cannot use any Immodium to control any additional diarrhea that comes my way. Hopefully, I make it through the weekend without needing any.

So far so good, though; I'm a little better than I was the day before. A negative stool test one week from Monday, and I'll be able to begin cycle 15 (my last nasty one, featuring the return of the cyclophosphamide/doxorubicin/vincristine combo I last saw in cycle 3) without any further delays. Here's hoping for that!