Coaches vs Cancer

What a busy week this has been! I'm really surprised how my body has been handling things this week. I would have never been able to do what I did this week on my fourth cycle, and I couldn't be more grateful. Well lets get this blog post rolling.

This week didn't start off the best for me. On Monday there were scheduling issues at the treatment center which delayed treatment significantly. I arrived for treatment at 9:15, and didn't begin until noon. This meant that I didn't get to leave until 4, and didn't get home until 6:30. It was a very long day. On the bright side, my white blood cell count skyrocketed from my last treatment. Remember last week when I had all of that pain from the neupogen shots? Well it was worth it because they did their job. My WBC was at 20! It was an all time low for me the last time I got treatment two weeks ago at just over 2. And now I'm at an all time high.

This improvement in my blood counts is what gave me the opportunity to get out this week. I was really afraid before of getting sick with my counts being so low. So what did I do this week other than receive chemo on Monday?

Tuesday was a rest day for me. I just slept, and relaxed all day. I tried to eat well, and get my body ready for Wednesday. Later in the day I put together my speech for the Coaches vs Cancer game which was on Wednesday. Going to this event was a last minute decision that I made on Monday. Two weeks ago the answer was no, but with how I felt going down to treatment on Monday I thought that I could maybe do this. My mom and I agreed that it would depend on my counts, and my oncologist of course. All was clear, and I let the coach know that I would be there. I left the speech part up in the air, but at the time I didn't plan on doing it. Just a pep talk for the team.

After much thinking on Monday, and Tuesday I finally decided to do the speech. It took me so long to make up my mind. A part of me was afraid of going up there. I mean if you know me even just a little bit, it's pretty easy to pick up on the fact that I'm not much of a talker. Public speaking is probably my weakest skill. The lack of preparation for the event, and the fact that I wasn't going to be feeling well wasn't helping either. I decided to try writing a speech, and if I didn't like it I wasn't presenting it. In less than 20 minutes I put together a speech that I really liked. It was so easy to write because I'm so passionate about what I planned on talking about. I was ready for this.

On Wednesday I felt better than Tuesday. Still pretty tired, but I was much more mentally ready to go. I rested for most of the day. I skipped on my PM steroid pills because sometimes they really mess me up. All I wanted was for the presentation to go well, and to not stumble over any words. And I delivered it exactly like I practiced. I actually wasn't that nervous when I spoke which was a first for me. Before I was called up I just thought of all of the other people battling cancer that I have met in my journey, and I knew that I couldn't let them down.

It was really an honor to be there, and I'm thankful for being given the opportunity to share my story.


Yesterday I was still going. I had an eye exam which was scheduled a while ago, and I had dinner at my Grandma's house after the exam. I'm getting my glasses next week. I'm pumped. My vision hasn't been the best over the past few years, but I haven't felt the need to get them checked on until recently. It was tough picking out frames because I'm going to look different once I get my hair back, but I think I picked a pair that'll look good.

Today has been my first good day of rest. I feel hot still though. I seem to get like this on the A cycle. My arms and legs almost look sunburnt. I'm getting some energy back, and I don't have mouthsores. Thank God with the mouthsores because I planned on eating whatever I wanted during Super Bowl whether my mouth felt good or not.

Shoutout to my friends Josh J, and Josh L for supporting me at the event.

Follow up Appointment

Yesterday was a very eventful day for me. I woke up to mild-moderate pain in my lower spine. I was really hoping I wouldn't have this, but usually Wednesday or Thursday is the day I get it if I do. It is a side effect from the neupogen shots that I get. These shots stimulate my bone marrow into producing white blood cells, and I receive one of these shots each day for 7 days following my last day of my B cycle. Luckily this pain wasn't too bad until later in the day so the trip down to Philly wasn't bad. I'll get to what happened later in just a second. I had an x-ray of my arm at 12:45, and my appointment with my surgeon at 1:30. We arrived at the hospital at 11:00 so we were really early. There wasn't much traffic so that was great. We got lunch which wasn't that great. We should have just went to the place we went last time. It had great soup. Then, I had the x-ray of my arm.

Next up was the appointment with my surgeon. I got in early at 1:00 which was really nice. The appointment went well. She was really happy with the flexibility in my elbow, and shoulder. I already have full flexibility in my elbow. And the shoulder is really good as well. She said that the flexibility in my shoulder is at a level that the other two proposed surgeries would have never given me. So this surgery was definitely the right choice. She was really surprised with the strength I have in my arm which was finally tested yesterday. The movement that really surprised her was when I rose my arm like I was raising my hand in class. It was the first time that I got to do that since surgery so I was a little nervous of how high I would get. I got really high, like as high as my other arm high. It was a little painful because the strength isn't all there yet, but it was awesome to see that I could do that. She thought that I was already doing strength rehab with the strength I already have, but I haven't yet. I got the ok to begin strength work, and the ok to drive. I still have to figure out where I'm going to do the rehab. Not sure yet. She doesn't think I'll be able to do the rehab that often right now with me receiving chemo. Maybe once a week, twice if I'm feeling well enough. Other things to mention. My arm hasn't really healed much since surgery which limits the weight I can lift to only 8 lbs for now. The cadaver bone hasn't taken at all yet either, and I have to put some vitamin e on my scar to reduce the redness there. The reason for the bone not taking, and the lack of healing is the chemo. So all in all it was good news yesterday for me. My next appointment will be in 6 weeks.


With all of that great news I was on such a high, but it didn't last very long. Remember the spine pain I mentioned earlier? Well that turned into a severe, beating pain around 5. And it did not let up. Actually, it just got worse, then spread to my knees, and then my shins. I just spent the evening curled up on the couch taking the beating. The pain was even worse than the last time I had it because it was in multiple locations. It was so painful to just move, let alone walk. I took my leftover painkillers from surgery, but it didn't do much for the pain. I ended up finally falling asleep around midnight, but that sleep was short lived. I woke up to even more pain at 2. Now it was spread into my ribs, and elbows. I was up until 4 before falling asleep again. I woke up with just mild pain in my knees, shins, and chest. As of me writing this now. I have it beating again in my knees, and sudden flare ups in my back. But it's no where near the pain I had last night so I'm happy. I hope this subsides, and doesn't get worse because I need sleep. I can't be tired on Monday when I have chemo.

Cycle 4 Complete

I haven't really been actively updating this blog lately, and I'm going to be completely honest with the reason why. This fourth cycle just sucked. I spent the whole last post comparing this fourth cycle to my first cycle. After this last week of treatment I now realize that this was the hardest cycle for me.

Physically, the side effects did come as a shocker after having a long recovery with surgery. I just got blasted with everything at once. But what made this past week the worst was the mental aspect of it. Nothing is more demoralizing than a week of chemo. I look back on this past week, and I don't know how I got through it. Sitting in a treatment center for hours on end with nothing to do but watch TV, and have countless trips to the bathroom. If you were wondering how many times I actually have to go to the bathroom in a 4 hour chemo session I actually counted one day. 18! And that day I felt like I wasn't making that many trips. At least I have really good kidneys. Not being able to take a good shower all week is another thing that I don't like about the week chemo. This is because my port is accessed, and I can't get it wet. So I get wrapped up, and still have to be pretty careful. There aren't many TV channels, but my mom and I have our routine of shows that we watch everyday. The shows we watch are, "Let's make a Deal(Never heard of the show until chemo, but apparently it's been around for a while)", "The Price is Right", "Who wants to be a Millionaire", and "The Chew". With the news in between. 

I keep that in my chest all week

Looks a little ridiculous, but it works

I had a surprise on Monday morning. White count was low, but high enough to receive treatment. It was at 2.3, and at 1 they won't give chemo. I haven't had any problems with my blood counts until this week. Luckily it didn't drop any lower this week. It actually rose to 2.7 by Friday. I'll have to be careful for now. I don't want to get sick.

By Wednesday I felt like I couldn't take anymore. I first thing I thought when I woke up...."It's only Wednesday! I'm not even halfway done with the week yet." I got 13 hours of sleep, and I felt like I needed 13 more. 13 hours does sound like a lot of sleep, but I guess it's not going to do you much good when their divided into 13 one hour naps with a bathroom break in between each. Last night I slept for only 8 hours, but only had 2 trips to the bathroom, and I must say that it was better than the 13 hours of sleep I usually get on a treatment day.

I hoped Thursday would be a better day, but didn't expect it to. It wasn't. Thursday is always my worst day in the B cycle. I thought Wednesday morning was bad, on Thursday I felt 10 times worse. I was so much more tired, and like usual the diarrhea is pretty bad. This makes the trip down to Philly not much fun.

Friday was substantially better than Thursday. I felt much more motivated to get ready in the morning. And that's how it always is on my last day.

One plus about this week was that I didn't throw up even once. Had a ton of close calls, but I kept my composure, and never actually threw up. It gets more difficult as the week goes on, but I got through it. The combination of the nausea, and the Mesna destroys my appetite in the treatment as the week progresses. On Monday I ate probably the most that I ever ate in the center, but by Friday I wouldn't even put food in my mouth other than the Atomic Fireballs that I only consume to mask the chemical taste.

My appointment with my oncologist on Friday went well. He explained to me that the fourth cycle is usually very difficult for Ewing's patients. After having that nice break it's tough returning to feeling like garbage again. He's really surprised with how my blood counts have been so resilient. These last three cycles can be troublesome with the blood counts, but I got through this fourth cycle pretty well. Hopefully I can get through these last two cycles without a transfusion. He said the platelets can really delay treatment if they go low, and I haven't had any problems there. I was actually above average in my bloodwork when it was measured on Thursday. We asked him about what's the plan after I finish treatment. If my scans are clear after finishing treatment I will get the port removed! I thought it was going to stay in for a while after treatment, like one year after, but he doesn't do that. Some oncologists do keep them in for a while, but it's more of a hassle to maintain it, and it's really not that much of a procedure to install one so you might as well lose it. He did say that there is a small chance that the cancer could come back, and that will be my next challenge. I can't worry about that yet. I'll be so happy to get this port out. It doesn't really bother me that much now, but when I'm done with treatment I want it out. I don't think I would feel like my treatment is over until I get the port out. Plus, it can get annoying when exercising.


Today I'm feeling a little better than yesterday. I think most of the chemo is out of my body now. I drank a lot these last two day trying to flush it out. I did a little more today than yesterday. I mainly rested on the couch yesterday and watched TV.  I did some rehab for my arm today which I haven't done in over a week with everything going on. My arm didn't really get that stiff over the week surprisingly. It felt really good to do the exercises today. My tricep tightened up over the week, and the exercises really get the blood flowing in there well. I have my follow up appointment with my surgeon on Thursday so I want my arm to be feeling really well by then.

And one last thing. This week I knew that I would start losing my hair again. I just didn't know which day would be the day where I really notice it. It was Thursday. As I have already mentioned before I don't really care about that, I just don't want to lose the eyebrows. So every morning I would lightly pull at my eyebrows just to see if they were falling out, and well.....one morning I did that and I got quite a few. So I think that I'm going to be eyebrowless(yes that's a word, not really though) very soon. I'm just going to try to avoid touching them, and hopefully I can just let them stay there even though the hair is likely all dead now. All of my facial hair fell out this week along with any new hair that grew in over my break with the exception of the hair on my head. I shaved that today though.

4 Down, 2 to go

edit: just realized that I unpublished this post. It's back on now.

Score Update

Haven't updated this in over a week!  Looking back at my last post I see that I started it, "I'm now two days out from returning to chemo, and I'm still not sure what to make of this." Well I think I got it figured out now. This fourth cycle reminds me a lot of my first cycle of chemo. Here are the similarities.

1. My first cycle began right when it was kind of rough being home alone in the beginning, but I eventually adjusted. The past month and a half has been great with my brothers home from school a lot due to all of the holidays. But that changed this week, and I had to make that same adjustment again. I just try to keep my mind as occupied as possible. When I don't my mind can travel to places that only will hurt me. So keeping busy is key. The first half of treatment I mainly played video games, listened to music, used my tablet, youtube, blogging etc. Two new things that'll keep me occupied over the next few months will be my arm rehab, and schoolwork. This week I got back to programming (something I haven't done since July). I'm going to at least touch all of the material I learned last year in school(all of the important subjects for my major) just so I don't forget it all. I think it's also important for me to do this because it can serve as a bridge between the end of chemo, and my return to "normal" life.

2. Second wind. I was feeling pretty well by last weekend. Energy was improving, but then on Monday I don't know what happened. My mouth was getting raw. No sores, but my gums were really inflamed. I used the Magic Mouthwash for the next couple days (Awesome Stuff). My mouth feels fine now, thank God. I also was much more tired on Monday than Sunday. Another annoying side effect that I never really mention is the...heartburn? That started on Monday also. Swallowing hurts my chest, and a few nights I was up with pain. I felt like I was going to through up. Took some Tums, and it helped a little. I get that from time to time now. Not sure what's causing it. It's a feeling I never experienced until chemo started. And lastly, and this side effect will not go away until treatment is over, and will continue to worsen: Peripheral Neuropathy. I hate this one. My fingers are just a little numb right now, but like it happened over the first three cycles. It will not improve. I don't really remember having a second wind like this in any other of my cycles, but I'm probably wrong.

3. The side effects. Like my first cycle I was feeling pretty well last Monday before treatment. That changes right when the first drop of chemo goes through the IV. It's a little overwhelming on that first cycle when you're introduced to those side effects. I was a little more prepared this time, but it still is tough to deal with. 

Right now I feel pretty well. No mouth sores. I feel like the arm is at a point where the rehab I'm doing right now isn't going to make it any better. I'm ready for that next step now which will be active range of motion exercises. I'll get the clear for that in two weeks. Hopefully I get the clear to drive too. I mean its not like I drive that often now, but its nice to have the option. I'm a little tired now. I might have overextended myself yesterday, but it was really worth it. I saw Joey's basketball game. It was a good game, but they lost unfortunately.  I think I might be a bad luck charm. I have seen two games this season, and they lost both. Sorry guys. As soon as I got home from the game, I slipped right into bed. One funny thing to say about yesterday was how crazy my mom was with making sure I was dressed warm. Right when we left the gym, she like freaked out on me to have my jacket zippered all the way up. I already had a hoody on underneath anyway, and it wasn't that cold out. Not like it was earlier in the week anyway. I wonder what she would have done had she seen me going outside earlier in the day getting the mail with shorts on, and just a hoody. Whoops!

The scar is looking pretty good

Here's one of the many rehab exercises I do now. These are the spider walks that I mentioned before. I'm really good at them now. They were really tough in the beginning, but after doing them three times a day the past few weeks I now can get my right arm as high as my left.

Keeping up with the theme of my blog: The Biggest Game. Here's the latest update from the game. Team Ewing's is having a difficult time without their star player, Jimmy. What's left of the team is having difficulty playing. They're afraid that they won't finish the game. My chemo is just too much for them to handle. My team played a little dirty at halftime in removing Jimmy from the game, but my team has that "win at all costs" attitude. Team Ewing's had a big head start, but it only went downhill from there. The third quarter just began, and I'm winning now with no intentions of giving that lead up.


Last thing. My friend Julie Mina is now cancer free! Congratulations! I wish you the best.

Back to the Grind

Happy New Year Everyone!

I'm now two days out from returning to chemo, and I'm still not sure what to make of this. Before Monday, the last time I had chemo was November 15th. My break was pretty much two parts. I really enjoyed the first half of my break. Before surgery I felt my best in months. Part 2 of my break wasn't as enjoyable, but I definitely made the most of it. The time really flew by. Lots of holidays, and lots of fun. These past 6 weeks have been the most "normal" time I have had in a while. In this time I began to forget what chemo "really" felt like. I think this is due to all of the other things occupying my mind like my arm rehab, and the busy holiday season. It wasn't until a few days before the 30th that I realized that fun-time was coming to an end. I started to become anxious over how I would do with the treatment. I wondered if my body would just get "shocked" with all of the chemo that I haven't received in a while. A part of me just wanted to get going with it already, but I also just wanted to just chill, and keep enjoying feeling well. It was a tough time for me. Before starting my treatment in August I predicted that the day that I return to chemo would be a difficult day for me. Possibly the most difficult one. 

Well, I definitely remember what chemo feels like now. Two days ago I returned to Penn at Radnor to resume my chemotherapy. This time I brought a friend to help me get through it. Thanks Josh! It was a long day like always. We left the house at around 7, and didn't get back until 5:30. I walked into the office feeling great, and energetic. (Well as energetic as someone could be who is about to get poison pumped through their body.) I ate a little more that I usually do during treatment. I had some fruit, and potato chips. I drank a lot of fluids like usual. Two parts of the treatment that really stood out, and brought me back to the cancer treatment lifestyle are as follows.

1. The energy drain. Every time I got up to go to the bathroom during the treatment I felt weaker, and weaker. By the end of treatment I had no energy left! I think this is the most discouraging part for me because this energy just doesn't come back the next day. You wake up the next day much worse off, and the energy doesn't start coming back for a few days. I won't have the energy that I had walking into the office on Monday until my chemotherapy is finished in March. 

2. The Mesna. I can't stand that drug. It's just a prechemo drug, but I hate the taste it puts in your mouth. This time I ate atomic fireballs, and they did a really good job of masking the taste. They were definitely the best remedy I have tried so far for the Mesna. I had a lot of anxiety over receiving this drug, and I was really afraid of throwing up from the taste it gives because it did happen once before. Once I got through the Mesna I felt much better.

The only new thing to say about my treatment is that I'm now receiving this drug that protects your heart from the chemo, specifically the "Red Devil". On my chemo regimen they give you this drug on the fourth cycle, and it continues for the rest of the treatment on my "A" cycle days. It adds 20 minutes to my treatment. I also received this new mouthwash that protects your mouth from mouth sores. I think it's working well so far. I only have one spot on my tongue, and it's really not that bad. I've been using the mouthwash 4-6 times a day.

I Hate Taking Pills

How am I feeling today? Not great, but I'm doing better than I thought I would be. I didn't do much of anything the last two days. I just have been laying on the couch, and just resting. I only made it till 7 last night. So I didn't see the ball drop this year. Oh well, it's overrated anyway.  I'm eating better today, and the "Chemo-brain" isn't as bad today as it was yesterday. So the main side effects I'm dealing with right now are the lethargy, and another side effect that I think I have failed to mention in my blog. It's an odd feeling, and almost hard to describe. At times I feel really hot(like right now), and other times I feel really cold. My body temp is steady, but I feel this way for a few days following treatment. 

Some good news...My arm is feeling pretty well. The exercises are becoming easy for me. I don't have too much pain going through the workouts. Especially the spider crawls. That was the most difficult exercise for me, and now it's not too bad. I can get my arm almost as high as the other. The hard work is really paying off. It's crazy to think how far I have progressed in just a little over 3 weeks.