One Year in New York

It was a year ago today that I arrived in New York to seek treatment. I remember, upon arrival, a lot of New Year's celebrators grabbing whatever cabs they saw so they could get to Times Square. Not like I was in any position to go even if I wanted to -- by the time my diagnosis had come back, I needed crutches to walk, and couldn't bear much weight on my left foot. Any "walking" of note required being pushed around in a wheelchair.

I had no idea what I was about to face or how long I would have to be in treatment. Would I have tumors all over me? Would I need treatment for the rest of whatever time I had left? The closest thing to a family experience with cancer I'd had up to that point was a close family friend who was diagnosed with Stage IV ovarian cancer in 1990. I can remember visiting her and seeing her crashed on her couch exhausted from chemo treatments. And then later on, she was in a hospice, and I'm so glad that back then I didn't know what a hospice was for. I remember seeing her in bed, weak and thinned out, with a number tubes in her. She passed away in late November. Having seen that endgame before made the days between my diagnosis and my first scans quite scary, though the gravity of the situation also worked in my favor -- there was this emotional numbing effect that kicked in when my diagnosis came back that also blunted my sensations of fear.

Well, here I am one year later, with just one more chemo cycle left and still healthy. This gives me a lot to be thankful for, most importantly that I will have some guaranteed time at home between the end of my treatment and my late March scans. Not all patients get to this stage, so to even have this time makes me feel very blessed. I still have a long way to go, though, considering that there will be regular scans and tests and associated anxiety, plus continued rehab as I get back in shape. Hopefully my sailing continues to be smooth.

To report on the latest with treatment itself, cycle 16 started with some very familiar feelings. The temozolomide in week 1 made me tired once again, though the big crash didn't kick in until Wednesday afternoon, lasting through the following Saturday. Before then, I had another pleasant experience of a new physical therapy exercise leading to some big progress shortly thereafter. On Tuesday afternoon, I was put through a set of basketball drills, involving moving side to side with my knees bent, as if I were playing defense and trying to steal the ball. Some dribbling was also thrown in. The next day, I suddenly felt more strength in my legs, and found myself taking short jogs through the main hallway clinic. I had tried to run before, with limited success -- I could get a running stride going as early as mid-October, but I could only produce it every now and then, and it did not feel particularly natural. This time, though, I was doing it while feeling the effects of chemo, and whenever I wanted. The stride still needs work, and I can only go slow and for short intervals at the moment, but now I do feel like I can run again, so that's big. Here's a video I took of myself the following Sunday, after I'd slept off the week's chemo tiredness:

The following week, chemo diarrhea kicked in, and without the Suprax antibiotic anti-diarrhea measure (I ceased using it on doctor's orders because of my recurrent C diff infections), it was a bit more persistent than any of my past cycles that had not been complicated by C diff. It first happened on Sunday night, with follow-up episodes on Wednesday, Saturday, Sunday, and Monday. A stool culture taken the morning after my first episode did not test positive for C diff, so thankfully I still had Immodium available to me for control, otherwise I'm sure things would have gotten out of hand. In even better news, my brother visited me for the first time since early May. He's a resident at the University of Wisconsin hospital in Madison, so he's really busy. The time we got to spend catching up and hanging out, though complicated by getting chemo, was still precious, and I'm most glad we had some time together after a really long time without it.

I just now feel like I'm kicking this cycle's chemo feeling. Physically, I shouldn't complain -- it really was expecting worse than what it's been given all the chemo I've had to date. But mentally, these later cycles are becoming more and more of a drain. To bring my running background back into it, it's like the end of a race, where I'm huffing and puffing even though the end is in sight. Still, it's time to kick things into gear and get some things done over the next couple of days. I then get a visit from Ashley, and I want to be able to enjoy it to the fullest!

Two More to Go

Tomorrow, I start cycle 16. That and cycle 17, and I will be done with chemo. There's still the radiation afterwards, but that will be a 10 day course, versus a yearlong ordeal. The last two cycles are both irinotecan and temozolomide. One change: this coming cycle, I am not taking the suprax antibiotic. Its function is to kill intestinal bacteria that could contribute to irinotecan diarrhea. However, since it can also create an intestinal environment in which C diff can thrive, there's the risk of that kind of diarrhea... And since it happened to me during cycles 13 and 14, we're trying to see if not taking it this time will keep the C diff at bay. But there's now an increased risk of irinotecan diarrhea, so hopefully that doesn't get me.

I had another round of scans last week, a PET scan and a chest CT, as usual. The results, in the words of Dr. Meyers, were the best we could hope for. The best news is that this one noticeable lung spot that we've been following, that was thought to have shrunk at one point, is looking more and more like it is innocuous. It has not really changed in size since the beginning. "A confluence of vessels," was what the interpreting radiologist said on the report. So hopefully it is innocuous. In other news, there was no mention of the smaller spots I'd mentioned before on the report. Either they might not have been flagged this time, or they've disappeared, in which case they could have been tumors. That's why I'm getting the radiation -- if there were tumors in my lungs, it's best to give them some extra treatment to ensure nothing comes back.

Next round of scans won't happen until 6 weeks after my last radiation dose, to avoid false positives showing up on a PET scan. That would put them in late March, assuming no further delays. Getting closer and closer to being done and going home!

A person, can develop a cold

The title of this post is courtesy of the musical Guys and Dolls. No, I didn't see that one on Broadway. Been a while since that one was playing. I saw a spring performance of it at my high school during my senior year. A number of my classmates took part. I remember that line in one of the songs. It felt apt given how my second week of cycle 15 progressed.

I did power through the post-chemo weekend pretty well, with surprisingly minimal crashing. What stayed with me were traces of the cold that had initially delayed me. Though most of the symptoms were gone when I'd started the cycle, there was a small residual cough. It never went away, and by the end of the weekend, it started becoming more frequent. I also started feeling weak and feverish. For three days, my temperature hovered around 37.5 C, and then it broke the 38 C threshold, meaning it was hospital time. The blood cultures turned up no bacterial infections, but a nasal swab revealed rhinovirus, so yes, it was that cold of mine making a comeback when my immune system was down.

I was in there until Sunday, when my blood counts began their comeback, one day behind schedule compared to cycles 3, 6, 9, and 12. Maybe it would have been longer -- Dr. Meyers, based on experience with past patients, worried that my counts might take an entire week to come up, and had me receive daily immune-boosting shots while I was inpatient. He was even thinking of continuing them this week, but then my blood counts on Monday morning turned out to be very robust, so that did not end up happening. I'm going back in now for another round of blood counts, and then another round of scans. If they turn out good, we can begin planning the endgame of my treatment. Should be only two more months now if everything's on schedule!

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!

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.

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! :)

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.

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!

Cycle 14 Has Begun

A quick note to everyone, since there was a question as to whether I'd begin cycle 14 today or I'd be delayed, it is the former that has happened. I had another C diff test when I came into clinic this morning. The result came back negative, so I got my chemo. I also saw Dr. Healey for a followup. He was pleased with my progress and the state of my left leg stump. So, good news on two fronts!

Hopefully, this cycle goes more smoothly than the last one, with no crazy chemo crash during the first week and no recurrence of C diff. Ashley comes again in just under two weeks. Without a delay, this would have been at the end of a good week, but even with it now occurring at the end of a second week, we'll make the most of it. Plus, the visit will feel like an instant reward for completing this cycle's chemo. Nothing wrong with some instant gratification... But first, time to get through the chemo!

Speedbump

So much for this past week being a chemo week, or my diarrhea abating. I never got back to normal in that department before Monday, and as a result, I had cycle 14 postponed until next week. I've been up and down as far as diarrhea goes this week. A stool test I had on Wednesday came up negative, but that does not mean I'm out of the woods. My course of Flagyl ends on Saturday morning. It's possible for the C diff to come back yet again on Monday if enough of it hasn't been killed off. If that's the case, I'll have to wait again to start cycle 14, and begin a course of vancomycin. Hopefully, that won't be the case; I'd like to get done with chemo sooner rather than later!

I've tried not to push myself too hard this week so I can regain strength. I had my fun when Ashley was here :) For the rest of her visit, we went to Brooklyn's botanical garden and then came back to Manhattan and had Indian food for dinner. It's a large expanse of green that makes you feel like you're getting away from all the hustle and bustle of New York. We spent by far most of our time looking at the roses, which is just one small section, so there's a lot we missed. But we couldn't help ourselves, both having a thing for rose gardens. Great opportunity for pictures too; below is my favorite of all the roses in the garden. I also spent some time drawing in a sketchbook Ashley got me; her efforts on making me more artistic are finally working!

I'm going to do my best now to have an enjoyable and restful weekend, in preparation for the resumption of chemo. Hopefully I don't get delayed again. As great as it has been to have needed recovery time, and looking back it has been needed -- I didn't head into this week feeling as recovered as I did previous weeks in which I was slated to receive chemo -- I want to most of all be done. It also disrupted my schedule, as there were a couple of events I wanted to see during my next two cycles that originally fell during good weeks that now don't. But again, it wasn't all bad. Besides the recovery time, I got to spend a little extra time with Ashley, riding with her to the airport and seeing her off when I otherwise would have had to get chemo. I do have to remind myself from time to time to look on the bright side!

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!

Football Season!

This is it, my favorite sports time of the year. I always get pumped for football season. I can't help it. Even though my team, Illinois, more often than not has a struggle of a season. I'm looking to football weekends to help carry me through to the end of chemo. Only 6 more cycles to go now!

One of my favorite places to be: at an Illinois football game in 2010.

This last cycle (#11) has been easier than the one before it. The first week, with both the irinotecan and temozolomide, was draining like before, but something changed in week #2. I had a surprising amount of energy during most of it, including a little shopping trip on Tuesday afternoon and a programming session on Wednesday afternoon. Eventually, of course, the chemo caught up to me, and I needed a major nap after I got disconnected on Friday.

I would say the turning point was a spontaneous trip I took a week ago with my mom to Williamsburg, a neighborhood in Brooklyn that has seen a recent influx of young people. It was definitely an interesting place to walk around. A number of the buildings looked worn down, but there were lots of young hipsters walking around, and street vendors peddling wares. I was reminded a bit of my Bay Area days, making the trip feel like a nice escape from Manhattan. And then I found this painted image of a ? block from Super Mario Brothers!

After the trip, I had a lot more energy. So I guess the moral of the story is to get out and do things even if you don't feel well. Sometimes it's more mental fatigue than physical.

How did this all start?

When I started this blog, I dated the beginning of my whole cancer ordeal to early October 2012, when I had a bout of intense pain in my left foot and ankle, much more intense than pains I'd felt there previously. I talked about that part of my body having had an injury history, but not in a lot of detail. I now feel like going into some more detail with the history. It won't do me any good now because I can't change the past, but maybe it will encourage someone reading this to jump on things early.

First Troubles
The real beginning of pains in my left foot was actually in April 2000. I was an 18 year old college freshman at the time, and I was pretty physically active that year. Not as much as I'd been in high school, where I was on the cross country and track teams, but I did run fairly regularly and lift weights, and for part of the spring semester, I also played pickup basketball once a week. One evening, I started feeling a sharp pain in the outside of my left foot, that was there even if I didn't put weight on the foot, and throbbed a little bit. It made me limp when I walked. A couple of days afterwards, I saw a doctor, and had an X-ray. There was no break or anything. The only comment from the radiologist was that there were "cystic changes" in the 5th metatarsal. We agreed to wait and see what happened. The pain went away 2 days later, and that was that, whatever it was was transitory, or so we thought. A month later, I broke the foot when the previously painful area was stepped on while playing basketball. It wasn't a hard step. Normally, it wouldn't have caused the bone to break or anything like that. But that was what happened to me.

I went through a fairly standard recovery process. I spent 4 weeks in a walking boot, the first 2 of which I was supposed to keep the boot on at all times, except for when I showered, when I was to remove the boot but shower sitting down as to put no weight on the foot. The second 2 weeks, I could remove the boot when I slept. The next 4 weeks, I wore a hard-soled shoe in place of the boot. During this period, I was to also perform strengthening exercises on the ankle in preparation for my return to normalcy. An X-ray after this was all done revealed that the bone had healed, and I was back to my normal self. I returned slowly to running, and was able to run 3 races the ensuing fall.

Stress Fracture... And Pains
In spring 2002, I developed more problems in that foot. During calendar 2001, my activity level had dropped as I started having arch pains in my right foot. A pair of orthotics countered that problem, and I went back to being more active. I ran, lifted weights, and also played pickup basketball games. Come early June, some dull, nagging pain in that area became more and more pronounced, and I had it checked out. An X-ray revealed a spot in that area that the doctor said was a cyst, which had weakened the bone to where the outside of the 5th metatarsal right near the previously injured area was very thin. That thinned part was showing signs of a stress fracture. I was given 6-8 weeks in a hard-soled shoe, after which the stress fracture appeared to be better, but the cyst was still there. I was cleared to try running, but I soon felt more pain. At that point, the doctor tried an ultrasound bone growth stimulator to see if that wouldn't get normal bone to regrow in place of the cyst. After some time with that, it didn't look much better on an X-ray, but I was ok to start running again late that fall. I didn't do much in that regards, but by about February I felt pain once again. This time, I spoke with an orthopedic surgeon, who told me what would be involved if I wanted surgery. A "door" would be opened in the wall of the bone next to the cyst, and whatever was there would be excised, after which the opening would be closed up. The resulting cavity would be filled with a bone graft, which was not guaranteed to take hold. Given that there was a chance that the procedure would not work, and that I was not too hampered as far as mobility, he advised against it. I had another bout of pain in April, a bit more intense this time, and another conversation with the surgeon. Another X-ray was taken; things looked about the same. Once again, he said that while he could take it out, he recommended against it, and added that I would just have to be careful with that foot.

California Days
I was eventually able to run comfortably again late that summer by making a change in footwear, going with shoes with some more cushion and space in the troubled part of my left foot. I would have a great academic 2003-04 as far as running went. I gave up playing basketball (with some isolated exceptions down the road in 2008, 2009, and 2011), figuring that would just give too much of a beating to the poor foot, but the running was great. I did get pains a couple of times, but after a little rest, I was back in the saddle. And I was in a great place for running. I had moved to Berkeley, California that August, and though my legs had to adjust to the hills, once they did I was greatly rewarded. Long runs up roads and trails there would give me spectacular views of San Francisco, the Bay, and the Golden Gate Bridge. I was eventually slowed in July and again in October 2004 by knee problems. This gradually led to my falling off the saddle. I would still have occasional pains in my foot, but really not more than 2-3 times per year, lasting only 1-2 days, and they seemed to happen during periods when I was more active than not. There was one instance or two, I don't remember when exactly, where I'd have pain just above the ankle, but otherwise, it was in the previously injured area of my left foot. Oh well, it was that weak bone I had to live with.

Back to Illinois, and More Pains
At the end of May 2007, I moved back to Illinois. I went through off-and-on periods of physical activity, with about the same frequency of bone pains. There was one instance in November 2007 of pain above the ankle, which I attributed to doing something to it during a run the day before. I hit another athletic peak in summer 2008, when I trained for and then ran a 5K road race. I went through another lull, then picked things up again in spring 2009. I got a new pair of orthotics, as my previous ones had gotten old. After a good sequence of runs, I had some bouts with pain, again in the previously injured area, and that caused me to back off. These pains were like the ones I'd felt in California, lasting 1-2 days, but now I was having them more frequently than I was before; I think it was three times that spring. Backing off on the running, however, seemed to take care of the problem. That fall, I had more bouts with pain after picking it up again with the running. Now that I was having problems with a higher frequency, I went in for an X-ray. This was in late September. This time, there was no evidence of the cyst from 2002-03, though the radiologist again noted "cystic change" at the site of the previous fracture. I dialed down the running for a time, switched shoes again next year, and things seemed to get back to how they were before this spike in pains.

Things started to change a bit in 2011. I had a couple of instances -- one in March, and one in December -- of pain above the ankle. The last one was a bit more pronounced in terms of pain level. Still none of the instances from 2002 through then had the intensity of the pains that started last October, with hardly any swelling and throbbing, and while they hurt, I was able to go about my daily life ok, with at worst a bit of a limp when I walked. I started thinking that the orthotics must have been putting too much stress on the outside of my left foot, and decided to see if I could go without them. I got a new pair of shoes too, and sure enough, I could run in them without the orthotics. This was at the beginning of 2012. Things then got better for me as the year progressed, and while I had a couple of instances of foot pain, it didn't seem to be that big of a problem. That summer, after a program of squats, I suddenly found myself running longer runs much more easily than I had in years. I was thinking I would try for a race that fall. And then October came, and the intense pain hit. Interestingly enough, an X-ray taken then revealed nothing. Only an MRI revealed the brewing trouble.

Conclusion
The end of that long story was that I had 6 bones, the lower part of my shin plus 5 other bones in my foot, compromised by cancer, requiring amputation of my left leg below the knee. The big question is, when did it all start? Could it have really started in 2000? Ewing's sarcoma is rare in adults 30 and over, but much more common in 18 year-olds. But then again, if it was cancer back then, I don't think I would be here now. Same thing in 2002. A tumor known to be aggressive doesn't spare your life for an entire decade without treatment. 2009 might be a more interesting thought, with an increase in the amount of times I felt pain, though being 3 years prior to the when the very bad pains started still is a long time for it to brew. Or was 2011 the time to catch things? Dr. Wexler did think based on my initial PET scan that the cancer had brewed for some number of years. I think he said 2-3 years. But then that brings me to another puzzle. With it invading all these bones in one specific area, why wasn't it all over the rest of my body? I don't think I'll ever know the answer to that one. I guess I should praise my immune system for keeping it bottled up?

Well, what's done is done, and I should really express my happiness that I didn't catch it even later, but this question of whether I could have spotted the cancer earlier will always be there. Looking back, I think one thing at play was that I was reluctant to push things further, which could have ended up with me going under the knife. It's not like I was unable to be physically active, just limited, and what if surgery ended up compromising my ability to be active? Still, it probably wouldn't have been a bad thing to push for a more detailed scan when I got the pain flare-ups. I wouldn't have gotten an MRI last October without asking for one, and that's what revealed the brewing trouble, which did not show up on an X-ray taken then. So readers, don't be afraid to investigate further if you feel you need to. Bone cancers are rare, yes, but they do happen.

There Go My Eyebrows

Not surprisingly, I have been without hair during much of my chemo regimen. It's followed a pattern of the "bag" cycles knocking it out (the actual hair loss occurs during the third week of the cycle and continues a bit into the next cycle), followed by regrowth during each second irinotecan/temozolomide cycle. This time, I have reached a new stage of hair loss -- much of my eyebrows are gone. This is not the first time I have had hair loss there -- my eyebrows thinned during cycle 4 -- but the amount of loss is such that the majority of the hair is gone. I immortalized the moment with a picture:

I started chemo with quite a bit of hair, but as it never regrew fully before being knocked out again, I have progressively become more hairless with each bag cycle. I expect this trend to hold after cycles 12 and 15 (my last two bag cycles). I wonder what I'll look like then... As for the future, I've decided that this will serve as my official transition for embracing the bald look (I was already losing hair to baldness before my diagnosis), so from here on out, my head will be hairless, shaved, or buzz-cutted, whatever I happen to feel like at the time.

The View From Dermatology

Yesterday morning, I went to see a dermatologist about the spot on my stump that Dr. Healey thought was a wart. The dermatologists at Sloan-Kettering are at an outpatient facility on 53rd Street between 3rd and Lexington Avenues, rather than the main facility that occupies the whole York/1st/67th/68th block. I got my pre-surgery MRIs at this same facility. Unlike then, I can actually walk now, so the original plan was to walk all the a way there, but a rainstorm forced a change of plans -- walk just to the main Sloan-Kettering facility, where there is a free shuttle that goes to the 53rd Street facility.

Darkened spot on my stump. Is it a pressure spot, like I first thought, or a wart?

The dermatologist I saw, Dr. Querfeld, began by examining the spot. Her take was that it is not a wart. Rather, it is a pressure spot that has crusted over as a result of occluded sweat glands. I received prescriptions for a couple of topical creams to soften the skin up. But that was not the end of things. From what happened next, I gathered that to a dermatologist at a cancer center, everyone who walks in the door is a potential melanoma patient. I received a full-body mole examination, with an assistant taking a couple of pictures to serve as references to compare against in the future, and a reminder to be ultra-vigilant with applying sunscreen. One of the medicines I have to take while on chemo -- bactrim, an antibiotic I have to take twice a day every weekend to prevent a form of pneumonia I could get while my immune system is weakened by chemo drugs -- makes me extra-sensitive to sunlight and prone to skin damage from ultraviolet rays. Then there's the issue of me missing most of my hair, most notably on my head which normally is protected by it. I've been wearing hats when I go outside and applying sunscreen, but Dr. Querfeld noted some signs of sun damage. So time to step up my game. However, I didn't have anything on me that looks like melanoma or potential melanoma, so that much is good. I'll be coming in again either a little after the end of chemo or around the time of my first post-chemo scans for a follow-up on the moles, and I'm guessing there will be more follow-ups. Not that I mind -- with melanoma something that needs to be caught early to ensure successful treatment, this will ensure I don't miss anything.

Energy-wise, I've felt close to normal today. After a good session at physical therapy, where I did a lot of walking without my cane, I feel ready to take on the world. Time to figure out something fun to do before I start my next round of chemo. Ideally, I'd go out and see places every day, but I also have some thesis work I need to get done. So little time when I feel good, so much to do... Story of my life during chemo!

The Middle Mile

In high school, my cross-country races were three miles long. Of those three miles, the middle mile was usually the toughest one. Though the goal in each race was "negative splits," where the time for each mile is faster than the previous one, what typically happened was a different story. My first mile would be the fastest, starting out the race with full energy and feeling good to go. Then I would get tired, and slow down noticeably during the second mile. The question, "Will this race ever end?" would creep into my head as my energy dropped. Then, the third mile would hit, where I would find some reserves and pick things up as I saw the end in sight, but not reach the same speed that I had for my first mile.

September 1998. Running a cross-country race as a senior in high school. I believe this photo was taken during the middle mile of said race.

The middle mile experience is how I can best explain how I've felt this cycle versus the prior ones. Last week, even with my not getting temozolomide, I often felt drained. It wasn't such an acute feeling like I had the week before, but more of a nagging feeling that would hit as soon as I arrived in clinic for chemo and persist throughout the day. My digestive tract also felt "off" all day long. It wasn't nausea; I could still eat and all and didn't want to vomit. However, it always felt agitated in some way, even when there was no irinotecan-associated diarrhea to control. By evening, shortly after dinner, I felt both tired and a bit queasy. Nighttime sleep restored me to feeling somewhat normal, only for everything to repeat itself the next day.

Today, this feeling finally began to fade. Hopefully, I have a good next few days that don't go by too quickly. I have some things I need to do when I have the energy. And I furthermore hope that next cycle (#11) is easier on me, like cycle 8 being easier than cycle 7. Then after that it's my last ifosfamide/etoposide cycle (#12), and then after that the last third of my treatment. Or the last mile of my race, where I look to catch that second wind!

Tiredzolomide

That's what I'm renaming temozolomide to after the amount of fatigue it gave me this past week. I'm reminded of cycle 7 in terms of being hit by fatigue from it, though the onset was a bit later. Unlike that cycle, when I was hit right away, it kicked in on Tuesday. By Wednesday, I was napping in the clinic while getting chemo. I was able to make it to physical therapy that day, but on Friday, I opted to go straight back instead and get more rest. The tiredness continued through the weekend, where I spent a lot of time in bed. I think I'm finally over it now, having napped most of the afternoon. Just in time for some more chemo this week, though irinotecan alone does not make me so tired.

The week before last was busy with appointments, as I'd mentioned earlier. Physical therapy twice, a follow-up with Dr. Healey, a blood count check, and a follow-up with my prosthetist. Highlights: at physical therapy, I learned how to do situps and pushups even though I have only one leg. Situps actually aren't that hard using the same technique I did when I had both my legs, but there's a bit less stability with a stump not on the ground, so putting my legs on a big ball are an option if I want a completely stable base. Pushups require putting a ball (a kickball-sized rubber ball suffices) under my stump to make them work like I did before, or I can do them on my knees (less intense). At my visit with Dr. Healey, he examined my stump and saw me walk. Overall, he was pleased with my recovery. Interestingly enough, he thinks that a dry, darkened spot on my stump that is lined up with a point on the outside a little below my knee at which I was getting some pressure from my prosthesis is actually a wart, and I'm going to see a dermatologist in a little over a week to investigate. At the prosthetist's, I got more relief from the pressure spot with a small adjustment to the socket. I haven't gotten any pressure there since, though now I'm getting a bit of pressure at the bottom of my stump. Still, it's been an improvement overall, and I can walk with closer to normal speed now, so as long as I make progress I'm happy.

Now, onto a week of irinotecan alone with hopefully a lot less tiredness than what I went through last week. In a way, though, what I went through was not enough tiredness -- I talked about napping, but a lot of the time, I was lying down hoping I would but instead remaining awake while feeling the fatigue. It would have been better if I'd just slept though it all, which was actually the case this afternoon. I certainly wouldn't mind actually sleeping through as much of the chemo period as possible so I can experience less of all the bad feelings, but then again, it wouldn't be chemo without all of those, now would it?

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.

First Week of Cycle 8 and Rehab Progress

Currently, I'm recovering from the first week of cycle 8. The fatigue wasn't as bad as the corresponding week of cycle 7. I didn't fall asleep while getting chemo, and made it through both of my physical therapy sessions. The fatigue really didn't start hitting until after Wednesday's physical therapy session, actually. That's when I started to need afternoon naps. On Thursday, I slept right before lunch and through a lot of the afternoon. Friday, my energy was better, enough to make it through chemo, physical therapy, and a subsequent appointment with the rehab doctor, but after dinner, a huge crash hit and I was fast asleep for most of the time until about 6am today.

I've made some big progress with my walking recently. It starting during cycle 7, when I started feeling less pressure at the bottom of my stump leg while walking. There were still, though, instances of pressure around a bone on the outside of the stump a little below the knee, enough to cause skin bruising. At my most recent follow-up with my prosthetist, I showed him the bruise, and in response, he adjusted the socket of the prosthesis by cutting out a section of its outer layer that lined up with the bruised area on the skin. The outer layer of the socket is a rigid carbon fiber; the inner layer is a less rigid plastic, which allows for some "give." By exposing this part of the inner layer, the pressure was lessened, and my walking quickly became substantially easier. Here's a picture of the prosthesis post-adjustment, with the hole showing:

I've since been graduated by my physical therapist to a cane. She gave it to me on Wednesday. For the moment, I'm supposed to use it indoors while continuing to use one crutch outdoors. We'll revisit next week, and I'll hopefully soon move to full-time cane use. I can't move too quickly, though, even though I've been capable of taking outright unassisted steps since mid-March -- my therapist wants to ensure I walk with a smooth, balanced gait, and if I move too quickly, I could develop bad habits (namely, having my right side compensate for my left side) that will be hard to shake. And given my long term goal of running again, poor walking form is the last thing I would need!

Places You Want to Revisit

New York is New York. There is a lot to do here, lots to see, places I have seen that I still have to post about, places I still have to see... But I'm here for cancer treatment, not pleasure, so there's a limit to the fun I can have here.

I periodically think about the places I want to get back to when I'm done here. Home is one of them. I also want to get back to taking trips to conferences and research meetings like I was before. As I found from my trip to Boston, there's nothing like being in the thick of things with the research community.

One place in particular has been on my mind a lot, though. I have an attachment to the Bay Area, having lived there for four years and also having spent the last three summers there for internships. It has the features of an urban area, but there are also parks and other wide open areas to escape to. I have fond memories of running in the East Bay hills, where I would get amazing views of the city and the bay and the Golden Gate bridge.

With this in mind, I'm sharing one of my favorite songs with you this morning, Journey's famous Bay Area anthem, "Lights":

Most Recent Scans

I had another round of scans last Wednesday. I got the results on Friday, and it was good news. The PET scan was clear of tumors. Interestingly enough, the scan picked up increased muscle activity along the right side of my body. The radiologist suspected the reason was altered biomechanics/gait from being an amputee. Well, hopefully any asymmetry will be a thing of a past with more rehab progress. I've been walking much better as of late, and I might move to a cane from one crutch this week.

Now for the lungs. In my last post about scan results, I talked about spots in my lungs, how one of them (the largest one) looked to have shrunk, and it's likely meaning (there was a tumor in my lungs because it responded to chemo). This time, I spoke with Dr. Wexler, another member of the pediatric sarcoma team, about the results -- Dr. Meyers, who is overseeing my treatment, was away -- and got a different perspective. With a lot of numbers.

First off, no new spots appeared, and the small spots remained unchanged. This is much is definitely good. Now for the large spot. The size of the large spot was said to be 4 mm in the first scan, and 2 mm in the next scan. On this scan, there was no measurement given, but the spot was marked as unchanged, though on the image itself it appeared more diffuse that before. Now, is this a tumor, or is it something else? Dr. Wexler said that what are definitively marked as tumors are spots at least 1 cm in size that have a dense, round appearance. One other thing to consider is measurement error. The CT scanner takes 5 mm slices. Thus, the size of spots that are any smaller are going to be harder to measure precisely.

So what does this mean? Really, there is no way to be truly sure if there is any cancer in my lungs or not. The only thing to do is continue treatment. The regimen I'm on assumes metastatic disease. I mentioned radiation to the lungs as a treatment option back in March. I have two more sets of scans, one in September and one in December. The decision on radiation will be made after the December scans. I'm hoping there's nothing in the lungs, but if there's anything, it's remained contained through almost 5 months of treatment, and should be treatable with radiation as Ewing's sarcoma is a radiosensitive cancer.

Now, since I've been in the habit of posting videos featuring my doctors, here's a Sloan-Kettering commercial featuring Dr. Wexler talking about one of his past patients. What comes through here is his storytelling, which has also been a feature of the times I've seen him. He has a knack for explaining things based on his past experiences, usually studies he's been involved with when I've seen him, which I have found very informative.

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.