Christmas

I hope you all enjoyed Christmas! I know I did. It was a great time with my family. So for this post I'm going to discuss my three favorite gifts that I received this year.

1. The gift of keeping my arm.

A couple weeks ago my mom asked me what I wanted for Christmas. For me the answer was simple; For the surgery to go well, and to have good function in my arm. I received both of these gifts this Christmas. I was blessed to have the plan for surgery change to allow for more function in my arm. Now I have a really good chance for full strength, and flexibility. I also was lucky to have such a good surgery team, and for everything about the surgery go well for me. Back in August when I was being diagnosed with all of this I wasn't sure if I would even be able to keep my arm, and now I'm sitting here typing a blog post getting ready for some rehab after I'm finished with this. It's really incredible! Thank You University of Penn.

2. Autographed Football

This one is really awesome! I received a football signed by Ewing's Sarcoma survivor, and middle linebacker for the Giants, Mark Herzlich. Back when I found out that I had Ewing's sarcoma, I found out that it was an extremely rare disease. So I researched to see if anyone famous has had this cancer with the expectation that I wouldn't find anyone due to the rarity of it. I found one person. Mark Herzlich. His story really inspires me. To have bone cancer, beat it, and then play in the NFL is really amazing. He was also treated at the University of Penn. The words: one survivor to another are written on the top. Whenever I become discouraged with my situation from now on, I will put those words into my head. One survivor to another. Thanks Uncle Paul for getting me this football, and Mark Herzlich for supporting me.

3. Your support

The amount of support my family has received throughout my battle with cancer is really incredible. The other day my blog reached a milestone. 10,000 views. It's actually at 11,000 now, and I couldn't be more surprised. When I started this blog I didn't expect to get any views at all. Now I have over 10,000 views on my blog. But most importantly I have accomplished what I created this blog for: Helping other people. When you have a rare disease, most of the time you're not going to know someone else personally who had it. When you go to the internet you're not going to see much more than statistics, and treatment options for the disease. As a patient, how are you supposed to know what the treatment for the disease will really be like. And that's why I created the blog; to help others who are fighting the same battle as me. I chose to share my experience with my cancer treatment in the hope that others will find it useful. I have been in contact with many people who have been affected by this cancer. Some have even created blogs of their own because of me. This feeling of helping others is really the best gift I could ask for. So thank you everyone for reading my blog. And to those of you who are reading this who are battling cancer or other diseases; I hope 2014 brings more healing to all of you.

I Love This Picture!

More Results

Yesterday was a long day. I had an appointment with my oncologist at 11:15 and my surgeon at 1:15. We left the house at 8, and didn't get back until 5. The appointments....went well. I got all of my questions answered, and I'm now much less nervous about everything.

Let's break down where I stand with this cancer.  I now have all of the results of the scans I had before surgery. The last scan result I needed was the bone scan. Its Clean! No spreading of the cancer to my other bones. I asked my oncologist about the 2 mm nodule in my right lung. He's not worried about it at all. Since that was my first pure CT scan of my chest, the nodule could have been there my whole life. Also, 2 mm is the smallest size a CT scan can pick up. In other words...if you were to have 10 CT scans of your chest, not all of them would pick up the nodule. If my oncologist isn't worried about it, then neither am I. I don't know if I mentioned this before, but after surgery my hemoglobin dropped a lot. It dropped from 10 to 7, which caused me to become very tired during my stay in the hospital. To put the number into perspective, when you get below 8 you need a transfusion. The normal range is 13-16. Throughout treatment I've been pretty steady around 10. To help fix this without a transfusion I was given iron pills. Yesterday, I had blood work, and found out that my numbers are back up! Hemoglobin at 10.6. 

Now the last result. Necrosis percentage....only 20-30%. Yeah I was just as shocked as you are right now reading this when I was told this yesterday. Even a little upset. But, here's the problem here...I was a little confused. Here's the explanation I got from my oncologist. He's not worried about it. For Ewing's sarcoma, the necrosis percentage doesn't hold much merit, but it does with other cancers. He told me that he's had patients who have had 100% necrosis, and have the cancer come back multiple times. He would have been more worried if Jimmy didn't shrink so much. I mean, obviously the treatment is working. I had an 82% shrink of my primary tumor. So nothing is changing with my chemo. The plan is staying the same. Same drugs, 3 more months, same rest period, Same Everything. I was still a little upset leaving the office, and on our trip to my surgeon's office. Out of all of the thoughts that were going through my head, only one thing was able to help me come to grips with the current situation, and to think rationally again. Math. I thought to myself... If my tumor never shrunk, the cells just stayed put when they died rather than just dissolving or whatever they do. This result would have been much different as you'll see now. Jimmy started at roughly 100 ml. After three months of chemo it was down to 18 ml. So 82% of the tumor was already dead. Lastly, 20-30% of Jimmy was dead when he came out. So something like 5 ml of what was left was dead. Add that to the 82 ml that was shrunk, and you get a much different result. 87% necrosis. And this explanation is similar to what my surgeon said when I asked about the necrosis. I finally was fine after my surgeon explained the necrosis, and why it isn't really that important. She's had many patients with even less necrosis do just fine.


Now onto the arm. Everything is looking good so far. The incision looks great. She was happy with the range of motion in my elbow. I'm pretty close to full range there already. I was prescribed more exercises for my shoulder, so I'm progressing. I'm now able to hold up to 5 lbs with my arm. I have rehab at noon today. I can't wait to perform these new exercises. I have a follow up appointment in 4 weeks. She said that I might have the green light to do more things with my arm. Like play basketball. I was shocked that I might be shooting hoops in 4 weeks. She said it'll be good rehab. The main thing holding me back right now is my deltoid muscle. That needed to be detached, and then reattached during surgery. It's still healing right now, and I don't have much strength in it right now. The weakness in my deltoid muscle makes it difficult to raise my arm. Lastly, my arm isn't really that sore now. I'm not taking the painkillers anymore. Just Advil when I need it.

Looking forward I got the OK to return to chemo on the 30th. Not looking forward to it, but it must be done. 6 more treatment, 18 more days, 3 more cycles, 3 more months, that's all that remains. I already did it once. I can do this again. Hopefully I can stay as healthy as I did the first time.


Have a Merry Christmas Everyone.

Recovery

It's been exactly one week since my last post, and what have I done in this time...not much. I have been sleeping a lot, and when I say a lot I mean it. Like I get around 10 hours every night plus a few naps totaling around 3-4 hours a day. I've been eating well, and doing my exercises whenever I'm up and awake. Even though I don't feel like I'm doing much; I really am doing a lot. I'm recovering. I saw the biggest improvement in my arm yesterday from the day before yesterday. The swelling in my arm went down a lot giving me more flexibility in my elbow. I also didn't take any Dilaudid yesterday, just some Advil. The pain I felt didn't warrant the hardcore painkillers. I did take it this morning, but laying still all night sleeping can do that. I'm improving with all of the exercises except the external rotations. Not making any progress with that one. I'm not really using the sling anymore, not even when I go to sleep. The incision looks good as well. Last thing to mention with the arm. I'm just carrying myself around better. A week ago, I was all hunched over walking because of the arm, but now I'm standing straight up. And that's without the sling too. I can let my arm hang on the side of my body with little pain. I'm writing this blog post with no issue. Oh and the hip...I have no problems walking. The only thing to mention with the hip is that my upper thigh is still numb. Kind of a weird feeling. I'm going to ask my surgeon about it tomorrow. And lastly, my upper thigh, and hip gets that hot feeling that I mentioned a few blog post back. It hasn't been too bad. Only the one time a few nights ago was bad. I woke up at 4 in the morning, and it was pretty wicked. I just took the painkiller and fell asleep in 30 minutes. It was gone in the morning. I'm excited with how things are improving for me. It's really amazing at what one week can do for recovery. So the moral of the story here folks...Listen to your body; Don't fight it! It will reward you in the end.


The only exciting thing I did all week was go to Joey's basketball game. It was a really fun time. Too bad they lost, but it was a fun game to watch. I was shocked at how much my brother improved. I better get out practicing or he'll be beating me. Just kidding! I won't be playing ball for a while. The team looked great. The coaching up there is amazing. I hope I can make it to a few more games.


Now I'm going to mention some things that I forgot to mention in my last post. Some of these might make you laugh a little.
1. My right armpit is bald. They shaved it during surgery. Yeah didn't notice this until I got back from the hospital. I was really shocked when I saw it, like those hairs won't grow back for a long time. Not sure if I should just shave the other one. Yes, I'm OCD like that. I probably will. I need to be symmetrical.

2. About a week before surgery I began to notice that my eyebrow hair was falling out like crazy. Yes, it was finally happening. The one thing that I dread for my appearance than anything. Losing my Eyebrows. Well I just found out why this was happening. The new hair was pushing the old out. I now have a fresh pair of eyebrows. The hair is really short, and in my opinion looks kind of silly.

3. This one ties in with #2. My hair is growing in like crazy. My head was really fuzzy the other day. I was like a baby again. I got that shaved as soon as I noticed it because I hated it so much. I'm also getting mustache hair. So it was pretty odd to shave again. It was the first time I shaved since starting chemo. And lastly, the hair is already growing back. I have a mustache, and my head is fuzzy again. Ugh! I'll just have to let it be.

4. This last one was from the day of surgery. If you remember I was in the recovery room for quite a while, and it took me a while to come out from the anesthesia. Well, when my parents went down to check on me I was very out of it, and really trying to communicate with them, but couldn't. My blood pressure top number was at 180! I'm usually under 120. Well, before my parents left me my mom rubbed my head for a while. In just minutes I was calmed down, and my blood pressure dropped to 150! This is amazing! I don't remember any of this happening, but when my mom and dad told me about this I was amazed. I love my parents so much.

There's my selfie for the week.
I'm shaving the mustache as soon as I finish this post

So what's the plan this week. This week is going to be pretty busy. I have appointments with my oncologist, and surgeon tomorrow. I'll get the results of my bone scan, and also get to really talk to my oncologist about the CT scan. And get the clear to start chemo on the 30th. The appointment with the surgeon is just to make sure everything is going well so far. I'm pretty nervous about the appointment with the oncologist tomorrow. I just hope everything goes well. I have physical therapy on Tuesday morning, and chemo on the 30th.

Surgery Week

Before I dive into probably my longest post yet I just want to thank everyone for their support and prayers. I really am blessed to have this. It really makes a difference as you already know with the success of my surgery. The prayers have been answered. Thank you everyone!

Alright I'm going to try to keep this as short as I can, but at the same time try to get all of the main events that occurred throughout the week for me. I'm starting this right now at 7 pm Friday night. Let's see if I can get this done in one shot since my arm is pretty sore. Lots of pictures in here.

Monday: Made our trip down to Philadelphia, and stayed in a hotel that was only one mile away from the hospital. This was really nice on surgery day allowing us to get more sleep and be less stressed on an already stressful day. Not much really happened this day other than getting down to Philly, and enjoying the hotel which I did greatly. There was a pool, and hot tub in the hotel so I got rid of my nervous energy that way. It was a fun time with my brothers. On a normal day this would have helped me sleep better, but no dice this time. I only managed to get 4 hours of sleep. I just couldn't sleep that night. It's Friday now, and Monday night in the pool was the last time I had any amount of fun. So I was really glad for this day.

Had the Pool to Ourselves

Not to Brag, but don't I look pretty healthy in this picture?

I love hot tubs!

The picture right above at the beach was taken when me and my family went on vacation this summer. It was taken a week before I found out that the lump in my arm was more than just a strain, or tear. The swelling in my right arm is obvious even from the front in this picture. If you compare this image to the pictures above you can really see how far I have come. Not only am I bald now, but my arm looks back to normal. I also have genuine smiles on in the pictures on Monday. I was in so much pain on vacation... it was a pretty miserable time. Monday was the conclusion of my big break from treatment, and it really showed. I mean I was jumping in the pool and everything on Monday. It was really great! It's crazy to think that 6 months ago I was sitting in a hot tub on vacation thinking that the jets directed at my arm was going to fix it. On Monday I was sitting in a hot tub counting down the hours until the operation that would finally fix my arm.

Tuesday: Operation Day! A lot happened on this day, but I was knocked out for most of it.

Presurgery: We arrived at the hospital at 5:30 a.m, and the surgery started around 9 a.m. It was a pretty scary time for all of us, but us staying together is what helped us get through it. It was a pretty emotional experience when my family saw me for the last time before surgery in the waiting area dressed in my gown and all. I don't think it really hit me how scared I really was until I was getting dressed in my hospital gown. I began to get really afraid as I got dressed up, but seeing them one last time helped me a lot. The one thing that kind of eased me during this time was the fact that I was naked underneath my gown, and the hat thing looked ridiculous on me. My brothers were laughing at the way I looked. Once I said goodbye to my family they took me into the surgical room. Setting me up made me feel stressed out because they strap down like every part of your body to the bed. But they gave me an anti anxiety med which slowed me down so that feeling didn't last too long. The last thing I remember happening before I was knocked out from the anesthesia was........throwing up. Yeah, the anesthesia gave me problems during the last procedure(installing the port in my chest), and it was no different this time.

 Complete Boss Right Here

Surgery:

Surgery as you know went better than expected. My surgeon was very surprised how well it went. Like nothing went wrong at all. Some of these details might overlap from the post that my mom so generously wrote on Tuesday. The section of bone that was removed was 10 cm in length. There wasn't much muscle removed because the first margin of healthy tissue she took with Jimmy was clean. Meaning the removal of heathy tissue stopped there. The muscle she took didn't serve much function at all, and that strength will eventually come back. There was no damage to the rotator cuff so I'll get full flexibility in my shoulder. Also there was no damage to the nerve in my arm that controls hand function. My surgeon explained to me that this damage does occur a lot unfortunately, and it is difficult; often impossible to regain this hand function fully. Very lucky here. I can move my hand, fingers, and wrist in any way possible which was one of the first things they assessed when I woke up from surgery. Necrosis percentage I won't know for 2 weeks, but I'll get it on here when I find out. Some more statistics... 46 stitches in my arm, and 7 in my hip for the bone graft. One of the things that surprised me was that the surgery took longer than expected. 6 hours! It's crazy to think that I was knocked out for that long.

Post Surgery:

This part I don't really remember too much, but I was in recovery from like 3 until 8 pm. The first thing I remember doing was.... throwing up, and then I saw my parents in an hour or so. I remember feeling so bad because I wanted to talk to them so much, but I could barely speak because of how out of it I was. They left soon after so I could get more rest. A few hours later I saw Joey, and my mom. During this time I was much more alert, and able to talk with them. We were so happy with how well surgery went. This was also when my mom explained to me that I had a catheter which was a lifesaver for me that night. I didn't even realize it was there until she told me. I don't think I moved a muscle until I saw Joey, and my mom. I had so much pain in my arm, and my hip, but I feel like the nausea, and just overall sick,crappy feeling was the worst part of this night. Like after they left I threw up about an hour later. Then, about 20 minutes after that they transported me to my room. I was feeling pretty sick on the way up so they slowed down the bed. But as soon as we got to the room in which everyone was there already so happy to see me, it happened again. I threw up yet again. Not much happened after this. My family wasn't up there too long since I was still slowly getting over the anesthesia, and it was pretty late.

Night: 

I didn't get much sleep at the hospital during the nights, but the first night was the worst. It's hard to get much sleep when the nurses are checking your vitals every few hours, on top of that you have all of the iv's, wires, cords, and straps wrapped all over your body. This night was also pretty difficult to sleep because of the pain, and lack of effectiveness of the painkiller I was receiving. I switched that up in the morning. Switched from oxycodone to Dilaudid.  The other things that made sleep difficult was the constant beeping, sore throat, and numb tongue from the anesthesia. This unfortunately led to me biting my tongue pretty badly(still hurts pretty bad now), and not even realizing it until the following morning. So all of these extra annoyances that occurred on the first day kind of set the tone for how I'd be enjoying my stay in the hospital. 

Catheter:

The catheter was one of the things that I dreaded the most with having surgery, and my experience wasn't too bad I guess. I never really adjusted to it. I only had it in until the afternoon on Wenesday, but it's such a weird feeling not realizing when you're peeing. I had the urge to pee like all the time, and didn't feel like anything was coming out so it was scaring me. Getting the catheter out was about as comfortable as you'd expect....not at all. And it takes a few hours to get back to peeing on your own. Things get better as time goes.

Wednesday:
Things went much better on Wednesday than on Tuesday. I got the catheter out in the early afternoon, the pain meds were working better, and I got the leg cuff-things off. I don't know what they're called, but they're supposed to prevent leg clotting because they inflate like every couple of minutes. Sore throat didn't improve, and the tongue wasn't numb so it killed me. Still got down breakfast though. On Wednesday I was encouraged with the fact that I was progressing with things. Losing the catheter allowed for this. I met with my surgeon in the morning and she went over why the surgery was such a success. This was the first time that I really smiled after the surgery because all of the pain and crap I dealt with coming out of surgery kept my mind off of how awesome the procedure went for me. I met the therapist, and surprisingly started rehab that afternoon. The arm exercises were very difficult, and painful, and so were the hip exercises. She showed me how to use my cane which she recommended I use over the crutches for many reasons. Even though I was in a lot of pain, I still pushed through it. She was surprised with my resiliency. She was shocked when I was able to walk up, and down the stairs. I even messed up the technique making it more difficult for myself, but still made it look easy. Now for the arm rehab, I have no weight bearing with my shoulder for 4-6 weeks, but I can do passive range of motion exercises. Pendulum swings. I look so dumb doing them, but they are so difficult. I also do active range of motion exercises with my arm. Curls, fist clenches, and wrist rotations? Don't know what to call them. Maybe I'll upload a video of my routine so you can see what I'm doing for rehab. The hip exercises were difficult too. Very painful. I do this rehab 3 times a day. After rehab I had a few hours off until my grandma, and aunt came in to see me. In this time I tried to eat lunch, but made the mistake of ordering from the hospital. I thought that it'd be alright since breakfast wasn't bad, and I wasn't starved or anything. Just wanted to get something more in my stomach before I had company. But as soon as I pulled the lid off of my meal I got extremely nauseous and threw up my breakfast. About 20 minutes after throwing up, I finally urinated for the first time after losing the catheter. Right when I got out of the bathroom(which I was in for about 15 minutes struggling to pee in) my grandma and aunt Diane were there. We talked for a little bit, but they left and came back later since I didn't look too good, and needed sleep. I slept for a little bit, and felt much better when I got up. My dad got me chicken soup from the WaWa across the street. Wasn't too bad, but I had a dark moment with it.

Cancer:
Throughout this whole battle with cancer I can count all of the times that I have been so upset that I cried which I believe is a good thing. One was when I found out that I had a cancerous tumor. Second was actually a few times during my first cycle of chemo. Third was when I thought that the cancer spread to my lungs when I read the lab report. The other three all happened this week. The fourth was when I was sitting in the presurgery room getting dressed for surgery, and right after my family left me. The fifth was right here with the soup. My mom stayed with me while I tried to eat the soup while everyone else went out to give me a little break. This was impossible for me. There was no way that I could sit myself in the chair to allow my left arm to feed myself the soup. So I was forced to have my mom feed me! After about two spoonfuls I got so frustrated, and upset that I just told her to stop, and I only ate the bread. I felt so helpless sitting there getting fed. I just couldn't take it, and neither could my emotions. I just cried for minutes and couldn't stop. It helped me though because I needed to get it out with all of the suffering I had from the day before. The most recent time I cried was on my way home from the hospital, and I'll get to that soon.


After finally getting comfortable I finally was able to enjoy my visit from my family. We talked, and laughed, and had a great time for a few hours. I ended the day on a high note!

Thursday:
This was the day I came home. It started out well, but ended up being such a crappy day. When I woke up the sore throat was gone, the tongue was a little bit better, and the pain meds were keeping the arm, and hip pain at a manageable level. I remember this was the first day that I told the nurse that my arm pain wasn't a 10 in the morning. Early in the day I met with the therapist, and did better with the therapy than the day before. We had a pretty long walk in the halls, and I even finished the walk without the cane! Even though the arm didn't see much improvement I was so pumped with how much my hip improved in just one day. I met with one of the surgeons from the team and he cleared me to go home, and removed my drains. In 30 minutes, the wheelchair came up, and guess what happened at this moment? I sat down in the chair, yelled for the bucket, and threw up my grilled cheese and salad that I ate for lunch.  From here on out the day just sucked. The car ride ended up being 4 hours! I had to go to the bathroom so we stopped at a rest area. What happens here is my fifth time I really got upset. I got out of the car, and got really chilled when I got to about half the distance to the facility. My shivering was putting me in so much pain that I was in tears. I was chilled to the bone! I felt like my shivering was going to ruin the surgery, and force me back into the hospital. What happened next was something that I'll never forget. There was a really kind man who held the door for my mom (who was holding me up), and I. We were like 30 yards away so he didn't have to do it, but he did. Something this little doesn't sound like much, but this act of kindness is something I'll always remember. About 2 hours later we arrived home, and I couldn't have been more relieved. I took my pills, and slept my best night of sleep in days. 12 hours! Much better than the 4-5 hours of sleep I was only getting in the hospital.

Over the next few days things improved for me. Right now my arm is still just as sore as it was back in the hospital, only the pain meds make it manageable. But everything else is getting better. My tongue is almost healed. I'm walking without a limp, and only have a little bit of hip pain during the day. Moderate pain in the hip in the morning. Eating, and sleeping well. Every new day brings more healing. Tomorrow(Monday), I begin rehab at home on my arm. Pretty pumped up for it. Even though I have so much pain when I do the exercises, I still enjoy doing them. It's a new challenge for me; to rehab my new arm. Which reminds me...Don't ever think that you have anything cooler than my new arm. With all of the hardware in my arm. Its pretty decked out. Nothing cooler than it....Don't even argue with me there.

Frankenstein right here

After reading this blog post you might think that I complained a lot here. My answer to that....I'm a very truthful person, and this is my story. To say that last  week sucked would be an understatement. The most important thing that I needed to go well; the surgery, went excellently and I'm very lucky to have been given this gift. But everything else just went terribly. Like I didn't expect to throw up 7 times this week from the medication. Neither did I expect to bite my tongue to pieces, or to be in unimaginable pain from the procedure. If it weren't for the support of my family, friends, and all of you reading this right now along with the awesome care that I received at HUP (thanks nurses, doctors, surgeons, and everyone else involved with my care!) I don't know how I would have done it this week. If you are ever in a hard situation like this past week like surgery was for me, just remember that if I can get through this...So can you!

Alright I'm done. If you made it this far I applaud you. This was very long, and took me forever to put together. It took me a few days to finish this because my arm gets pretty uncomfortable after typing for a while. I still missed a lot of stuff during my week of surgery, maybe I'll mention things in future blog posts. I just want to get this posted already. I've kept you all waiting far too long.

Post Surgery

Just wanted to let everyone know that surgery went well. We arrived at the hospital at 5:30 am. Surgery started at 9:05am. It lasted almost 6 hours. He was taken to the recovery room at 2:45 pm. The surgeon came to see us and informed us that it went well. Michael had healthy margins around the tumor. This means that the cancer didn't go any where else in the arm. This meant that the surgical team didn't need to take as much tissue/muscle as they had originally thought. The other good news was that the bone wasn't as involved with the cancer either. The surgeon had said it was "weird". The bone  was actually speckled. I usually looks more discolored from the cancer. They did have to remove one of his tricep muscles. This means that he will be a little weaker to start with. If you know Mike like I do he won't be hitting the weights too soon. Joel and I were just up to see him in the recovery room. He wanted me to video him but I didn't have the heart to do it. He is having a little bit of a hard time coming out of the anesthesia. He is really out of it. He looks good though. He has a bandage on his right arm and a drain from the incision site. He also has a drain in the hip area where they took healthy bone to cement the cadaver bone. Thank you to every one that prayed for my son. God was listening!!! Please continue to pray for a speedy recovery. He will be going home either Thursday or Friday. He can pick up the blog then.. THANKS AGAIN!!!!

Surgery

This Tuesday is going to be a really big day for me. It's my surgery day to get Jimmy out. With the completion of the surgery it also puts me over the halfway point of my cancer treatment since I already had three chemo cycles, and still have three to go after surgery. It's really amazing to see how far I've come with this. I mean for a large portion of my freshman year of college I had no idea what was causing my arm to hurt, and I hoped it would get better. But nothing did, it just got worse eventually leading me to get it checked on. Soon after came the cancer diagnosis. And now after receiving three months of chemotherapy I'm finally getting what brought me here; my arm fixed. It wasn't the path that I expected to take to get my arm healed, but it's going to be worth it. After I rehab this arm, and get it to full strength after surgery it's going to be amazing. It's going to be the best my arm has felt in a year and a half! My arm is going to help motivate me to keep pushing through these last three months of chemo. Whenever I feel discouraged from now on after this surgery I'm just going to remember how lucky I really am. I mean not only do I get to keep my arm, but I'm going to (hopefully) have a fully functional arm after this procedure. And as long as everything works out I'll be cancer free at the end of my treatment. That day will be the greatest day of my life. 

If you were wondering if this surgery has me stressed out....the answer is yes, but I have been more stressed out before. It's just weird to think that in less than 48 hours I'm going to be knocked out in the operating room having my arm ripped apart. And this will last around 5 hours! But if there's anyone in this world that I trust performing my surgery it's gotta be my surgeon. My surgeon is one of the best in the world at performing these surgeries especially in the extremities. I have complete trust in my surgeon. I guess the only thing that bothers me with the surgery is just the morbidity of it. It's just not normal to have your arm split open with a saw inside of it chopping up your bones, and muscles. Serious complications with anesthesia are very rare, probably more rare than my cancer. And its funny that I say this because the other day I was talking to my brother, and he said that he doesn't like going in the ocean that much because of his fear of sharks and the other animals you don't see down under. I used to be that way, but now after being diagnosed with a rare cancer I feel like the chances of let's just say a shark attack, or complications with anesthesia are lower for me now. I mean what are the chances of being struck by lightning twice right? But getting back to the surgery. I think the worst part of everything will be the recovery, and from what I heard the most pain I will have will be in my hip from the bone graft. I read on this other guy's blog that had the same surgery as me and he felt like his skin was melting off of his hip from the bone graft. Nothing was able to stop the burning sensation. Not even ice. That's not something I'm looking forward to. Hopefully my experience is different from his. I'm going to be hospitalized until Thursday or Friday depending on how I'm doing, and then I get to come home. I can't wait! A lot of these things I am stressed out about I have been keeping to myself, and it was kind of destroying me until yesterday when I had a long talk with my mom about the stress I have been having. To make a long story short I felt so much better after having this talk. Thank you Mom! You're the best!

Now as much as I hate Jimmy. He has been very useful these past few months. There are a few reasons that my treatment regimen has chemo first rather than surgery. One of them is to shrink the tumor to make surgery easier. Another reason is so they can measure how well the chemo works for me. If Jimmy didn't shrink that much, my post surgery chemotherapy would change. So if you were wondering why I didn't just have surgery to start, now you know. I think the only downside to the removal of Jimmy is that I kind of lose the only thing that reassures me that the treatment is working. Now there is nothing really to measure. The only marker to tell whether the treatment is working are the scans. As long as they're clean, and no spreading of the cancer, then I'm good, but my next scan won't be until I finish this treatment. So I will have a little bit of anxiety that will increase as the end of treatment nears. The last thing to mention about Jimmy. There will be no funeral for him. 

Lastly, you readers are probably going to be wondering how my surgery goes. With me being on all of the pain medication, I'm probably not going to be up for this blogging stuff. So I'm going to have my mom write some posts just to get my current status out, and the outcome of the surgery on here. 

Please keep me in your prayers on Tuesday!

Wing King!

Yes, I'm going to dedicate this blog post to chicken wings, but I'm also going to mention some things that I failed to mention in earlier posts. I love chicken wings, and with my cancer treatment I had to limit the amount of spicy stuff because of mouth sores. But I didn't hold back yesterday, with this big break my mouth is completely healed now. I spent like 5 minutes the other day just feeling around in my mouth with my tongue because I have no life. But seriously, with the chemo, my gums and other parts in my mouth were swollen limiting the movement of my tongue. It was really annoying, but I got used to it. But back to the wings....my mouth isn't even sore today after all of the wings I ate yesterday.

Some background on this place. Back in July, actually about two weeks before I found out I had a parasite in my body who would be later called Jimmy, my aunt Diane, and Uncle Paul told me about this awesome restaurant in Stroudsburg called Big Daddy's. They told me about they're awesome chicken wings that they offer on Mondays and Thursdays when the Wing King is there to cook them. Now these are no ordinary chicken wings let me tell you. They have some pretty crazy flavors like Twix, and Jolly Rancher. We made a plan to go out when we got back from vacation, but then....well you know already what happens next. I get back from vacation, and all Hell breaks loose. I get diagnosed with cancer, and now I'm sitting here writing a blog about it. I didn't even think about Big Daddy's until I started getting a craving for spicy food midway through chemo. So I made a bucket-list of things to do during this break from chemo while my body feels pretty well. I completed mostly everything on the list already. The things on the list are to go to Banko's, and Big Daddy's to eat. Hang out with my friends, and lastly to see one of Joey's basketball games. The last one is going to have to wait until after surgery because the season starts after December 10th. Can't wait to see him play in the green and gold!

So at the restaurant yesterday we ordered 116 wings in total. We had two different orders. I ordered Jolly Rancher, PB & J, Twix, Garlic Ranch, The Kings Hot, and Horse Radish. My uncle ordered Pina Colada, Raspberry, Garlic Parmesan, and 3 Mile Island(really hot). Yeah, really crazy combination here. The wings were .50 a piece which isn't bad for gourmet wings. If your skeptical at all about these wings tasting like what they're named... don't be. Like the Twix wing has chocolate on it, and the PB & J has peanut butter on it, and they both taste amazing. My favorites were the Twix, PB & J, and Horse Radish. The horse radish was just a wild card when I ordered it, and I was surprised by how much I liked it. The 3 mile island wings were probably the hottest food I ever ate, and there is still one level up from those at Big Daddy's. I foolishly ate two of them, and my uncle Paul ate 4. I'm trying the Hell's fire next time! We'll see how that goes since the 3 mile island put me into a frenzy. It was all worth it though. It was such a fun night out. Thanks Uncle Paul, and Aunt Diane!

The Crew

So what did I do today. Just chilled mainly. The only exciting thing I did today was play basketball with Joey. I beat him 7-6, and there was no holding back on his end. It was so funny because I beat him on a hook-shot and he was so mad. Still can't beat your big bro Joey. Not even cancer can stop me from beating you hahaha. You might be surprised that I'd have the energy to do something as intense as basketball right now, but I'm not. I was actually surprised how quickly I got tired in the game because I felt so good before we started. It was fun since the last time I picked up a basketball was when I talked about it in my blog back in the beginning.


Wow! This is a pretty long post isn't it. I guess its because I love food so much. Which reminds me to write about my weight gain. Most people when they go through chemo treatment worry about losing too much weight. Not me! I gained 13 lbs! Pretty ridiculous stuff considering I have been the same weight since the 10th grade. Alright I'm done. I better stop before I get on the topic of food again.

Thanksgiving

Had a great day yesterday with my family. Dinner was great, and so were the desserts. In my family we have three birthdays in the span of 2 weeks so we celebrate them all on Thanksgiving. This means lots of dessert with cake, and ice cream being added to the usual pumpkin, and apple pies. I don't complain because I eat a little bit of everything. I felt pretty well yesterday considering the lack of sleep I got the night before doing some online holiday shopping. We played video games with our younger cousins. They loved Little Big Planet. It was they're first time playing the game, and in a few hours they got so good that we beat the most difficult level in the game together. It was epic. Way to go Ryan, and Samantha! It was great fun!

No Longer a Teen

Double Digits!

Biggest 10 Year Old Ever

Today I feel pretty tired. But I was up a few times last night getting some deals so it's partially my fault. It's worth it because I'm almost done with holiday shopping, and I saved a ton of money. Took a 3 hour nap from 12 pm to 3, and it helped a lot.

One last thing. Tomorrow will be the last day to donate to the Novembeards campaign. Below is a picture of me and my uncle Paul. He has just a little bit more facial hair than me. It's close though I swear, mine is just invisible.  

To donate click here.

Scan Results

I've been getting some of my results over the past few days. I hoped I would have gotten them earlier, but I didn't. The big test result I've been anxious to see was the MRI, and I finally received it this morning. The test results I got are the CT scan, and the MRI, but no bone scan.

Let's start with the MRI results because that's what I'm sure you've been waiting for too. I read the report, and from what I can tell, everything looks good. What's left of Jimmy didn't absorb much of the contrast dye meaning the cells aren't active. There was less absorbed this time on the outside, and little to none on the inside. It's like an empty shell. My surgeon said that this happens sometimes. When they take Jimmy out, they are going to run tests on the cells of the tumor to find the necrosis percentage which is the percentage of the tumor that is dead. She said that in cases like mine that they are a lot of times close to 100%, which is awesome! Hoping for that 100% necrosis percentage. The bone marrow in my arm also didn't absorb nearly as much as it did on the original scan. And most importantly, Jimmy shrunk SIGNIFICANTLY! Here's a chart displaying the original dimensions, and the current dimensions.
 

That's an 81% decrease right there folks! No wonder why my arm feels so much better than it did in July. There's like nothing there now. It's still kind of long, but the width, and height decreased a lot which is what saved me when calculating the volume.


Now onto the CT scan. There was a 2 mm nodule in my right lung, but my oncologist said that it's nothing to worry about, but we're gonna keep an eye on it just to be safe. It wasn't on the last scan, so it kind of freaked me out when I saw it on the results. I called, and didn't get a call back for a few hours. It wasn't fun. I was more afraid about this little 2 mm nodule, than I was back in July when I was being diagnosed with this because I know how bad this cancer spreading to your lung can be. Then I talked to one of his nurses, and she explained that it's nothing to worry about, and it's very small. Like so small that its barely detectable by a CT scan. I'm doing better now, but I'm still a little scared about it. I'll feel better after my next CT scan if it doesn't change in size, or shrinks. I mean it might not even be Ewing's Sarcoma at all.

So I'm still waiting for bone scan, but I'm not too worried about that one. I don't think it's going to show anything. I'm pretty sure it would have shown on the PET scan that I had before I started treatment.


So what have I been doing with my time during this wonderful break that I have you may ask? Well, a lot actually. I had some friends over on Saturday. It was great seeing everyone. It was fun crushing my friends in Madden! They couldn't handle my awesomeness. On Sunday I went to church, and received the Sacrament of the Anointing of the Sick. Thanks Father Gerry! I also enjoyed dinner at one of my favorite restaurants. Banko's! I got the orange roughy. Never had it before, and I thought it was really tasty. It was a really fun night out with my family. On Monday, I just rested at home. Didn't do much. I feel like I should have been somewhere that day. Oh yeah I forgot, I would normally be getting chemo, but not this time. Yesterday I had another friend over. It was a good visit. Played some 2k, and talked about sneakers. I don't think I've mentioned this before, but I love retro sneakers, and so does my friend. We're sneakerheads! My favorite sneakers are the Penny Hardaway retro's because he's my favorite player of all time.

Today I'm just resting. Getting my body ready for my favorite holiday tomorrow...Thanksgiving! I can't wait to see everyone tomorrow. It's going to be a great day! 

Lastly, thank you everyone for the prayers. They definitely help, and the proof is in the numbers. Keep praying for my healing of this rotten disease. Also for all of the other children battling cancer.

Me being a goof at Banko's

Good News!

Just finished my last scan. The bone scan, which was the most difficult test for me. The scans yesterday actually weren't too bad. I didn't feel claustrophobic during the MRI, and CAT scans. I think the ativan helped with that, and the tubes weren't as tight as the ones I have been in before. The CAT scan only lasted 5 minutes, but the MRI was a little over an hour. The bone scan was really bad for 5 minutes, but the remainder of the test was easy as 3.14. If you were wondering what the procedure is for a bone scan since you probably never had one/heard of one before. It works like this. They gave me a radioactive injection today at 11am, and told me to come back at 11 for the scans. I had to make sure to drink lots of fluids during this time to lesson the potency of the radioactive material in my body. When I got back, they ran the test. The machine they used looked like this.

My head was straight forward, facing the plate
during that portion

The test took around an hour, but the worst part was the first five minutes because it was the only time that your head was under the plate. After that, it was so easy. They just slide you out further and further until your whole body has been scanned.

But enough of my bickering, let's get onto some exciting stuff. Before I explain I need to say that the final measurements of the MRI, and the catscan results aren't in yet. So I don't know if the CAT scan was good, and of course the bone scan isn't known yet as well. 

So the plan for the surgery changed yesterday and for the better. I'm not going to be losing my whole humerus anymore! I will lose a chunk of my humerus, and some muscle and the bone will be replaced with some random dead guy's bone(cadaver). Thanks random dead guy! Then that will be coated with a titanium plating to fuse it to the ends of my humerus. I will have screws in my arm to help stabilize the bone, and I'll have a bone graft from my hip to help start the  dead guy's bone growth. If surgery goes well, there will be no loss of flexibility, and strength. Woohoo! Happy birthday, and Merry Christmas to me. The orthopedic surgeon who planned the surgery was very happy with how much the tumor shrunk. She could barely feel it there. The MRI showed that Jimmy was much skinnier, but still kind of long. She estimates it's about 5 cm in length down from 6.9. Yep, that's what happens when all you've been drinking the last three months is chemotherapy poison. She said the response I had with the chemo will make her job much easier when she performs the surgery. It was really awesome yesterday because I walked into the office with questions such as: How much flexibility will I lose?, will I be able to play sports?, and how long will the rod last in my arm? I walked out knowing that after this surgery I will be able to do everything that I used to do. Some more surgery stuff. The surgery will take roughly 5 hours, and I'll be in the hospital until Thursday. Another funny thing about this surgery is that it would have been on my birthday(the 3rd), but they couldn't fit me in. I'm very thankful for that. Lastly, this surgery wouldn't have been possible if it weren't for Jimmy being located in the middle of my humerus. Most of the time ewing's sarcoma will grow out of one of the ends of the bone making this incredible plan for surgery not possible.

I'll make a blog post when I get the results of the scans. Should be in the next couple days.

Big Day Today

I'm writing this post from the hotel. I'm a little bored this morning so I decided to write this.

Today I'll be having a catscan of my chest at 9:15, and MRI right after that of my arm to see how much Jimmy shrunk. Hopefully down to nothing! At 12 I'll have a meeting with my surgeon to plan the surgery. If you think these tests would stress me out, then you're absolutely right. The procedure itself is what gets me too. I hate being in those tubes, enclosed like that. I don't think I'm claustrophobic, but I'm definitely MRI, and CAT-phobic. And it doesn't end today with the tests. I got a call yesterday, that the doctor wants me to get a bone scan. So that's scheduled for this Friday. The past few days have been a little hard for me, so I did what I always do when I'm realy stressed out like this.....Exercise! Yeah, the same kid who didn't do anything but sleep in his bed all of Saturday was on the treadmill that Tuesday. I only was on it for 7 minutes, but I did work up to a jog. I also did some bodyweight squats too. It felt pretty good to exercise. It not only helped with the stress which is why I exercised in the first place, but I also need to stay strong. My legs have gotten much thinner from not using them, and I don't want them to get any weaker. I'm going to try to exercise as often as I can during this little break.

Running on the treadmill like a boss!

Please keep me in your prayers today!

3rd Cycle Complete

Another cycle of chemo in the books! This one was definitely the most difficult for me. It hit me really hard in comparison to what I've come to expect from this treatment. On Monday morning I felt really well and recovered from the last treatment, like I usually do. By the middle of the week I felt like I was a zombie; just going through the motions. Same routine everyday; wake-up, go to Radnor, get my treatment, go home, eat, then sleep. The latest I fell asleep this week was like 7.

But I can't blame everything on the chemo. I got off to a bad start on Monday right when I walked into the office. They were surprised to see me there, and for some reason I wasn't on the schedule for the day. It wouldn't of been a problem if an oncologist didn't have to be there to receive chemo, but the oncologist was scheduled to leave at 11. So I was out of luck since my chemo runs until 2. I got my treatment at Penn in Philly, which I didn't like at all. I could write a whole post describing this day, but I don't want to depress you. Let's just say that it was a much different environment from what I'm used to at Radnor.

Other than Monday's disaster, the only other garbage with last week's treatment were the traffic being bad on a few days, and Friday being a long, busy day. The traffic was just bad luck. I had to get up early on Friday because of the scheduling problem I talked about earlier. I wasn't even listed on the schedule for the entire week until Monday morning, so they fit me in the oncologist's first slot for the day for an appointment. 8:45 ugh! At least I got to finish chemo early that day though. This allowed me to attend the benefit that was held for me for a little while.

The appointment with my oncologist went well. He's happy with how I'm responding to the treatment. I'm kind of beating the odds with this treatment. Usually people need a blood transfusion by now when they get this chemotherapy regimen, and he's really impressed with my blood test results. It doesn't sound like I was even close to needing a blood transfusion. I still have my eyebrows. Thank God! I mean they are thinning out along with all of the hair on my body, but they're still there. The only thing that concerned him was the neuropathy in my fingers, and my now weak fingernails. I just noticed the fingernails getting a little sore like a week ago, and they have weird looking ridges on them. It's hard to describe, but he just said to watch what I do with my hands because I may rip a nail out. Ouch! The neuropathy has been an ongoing thing and has gotten worse. Now all of my fingertips feel numb all the time. He's gonna keep an eye on it, and adjust the dose of the chemo if it keeps getting worse because it could end up being permanent if you're not careful.

Yes I look tired, but
I'm comfy and warm too

On Wednesday I received something really awesome. A Chemo Cozy jacket. What's makes this different from your average jacket, is that it has zippers on it for ports, and picc lines. There are so many benefits to this jacket; Not having to take off your shirt to get the tubes attached to the port, being warmer due to the cold tubes not touching your skin, and having the coolest looking jacket around. I love it. After wearing it to treatment once, you never want to wear anything else but a Chemo Cozy to receive treatment. Thank you to Greg, and Ellen Hamilton for inventing this awesome product, and the Wills family for purchasing me it.


I also would like to thank everyone that organized, donated, and participated in the benefit that was held at Birchwood nursing home. They did an awesome job. It was nonstop all day. My family is very grateful for this. The raffle baskets will be chanced off December 2, so if you missed it stop by and take a chance on some great baskets.

Thanks Brian, and Joey

Lastly, I would like to thank the Sapa company for organizing a 50/50 weekly raffle for my family to help with the expenses. It is greatly appreciated.

Lastly, you're probably wondering how I'm feeling today. To answer that...pretty well. I think I'm going to go play some pickup basketball later....just kidding, but maybe in 2-3 weeks I might. I'm really itching to get back to doing some physical activity and right now might be my only chance in the next 4-5 months that I'll have. Because after surgery, who knows how long it'll take before I can use the arm. Well I felt significantly better on Sunday, and even better today. My Saturday of sleep did me well. Right now I'm still just a little tired. I should be feeling well by Thursday when I get my scans. For the results, I'll be happy with 70% shrinkage, and the lungs better be clear. I want that surgery to be very easy and complication free.

One last thing to note before I go. Thanks to everyone that is participating in Novembeards. The donations are going to a great cause, and I'm very happy to see the success were having with it. If you haven't checked it out already here's a link. Novembeards

Starting to Feel Better

Since my last post I have had ups and downs as far as I feel. I felt like I was beginning to get over the chemo on Thursday, but then on Friday I got like a second wind of it or something. I felt worse on Saturday, and really bad on Sunday, especially after church. When I woke up I felt a bit better than Saturday so I decided to go to church since I haven't gone in 2 weeks. Big Mistake! Church was like a workout. I didn't realize how tired I really was until I had to stand for a few minutes. Standing, kneeling, and sitting...a workout, that's sad for me. The standing parts of mass were killing me.  My heart was racing like I ran sprints during those parts. When I got home I slept on the couch for hours, and went to bed early too(7:00). On these bad days, the only thing that was making me feel crappy was the fatigue; nothing else. But it was so intense. Sleeping, and resting didn't seem to even help much.

Fortunately for me I started feeling a little better today. I still took my naps, but I didn't feel overwhelmingly tired. Today I finally feel like myself, and I have much more energy. Took long enough! My body needs to start working better, its slacking! It'll get a pretty good break after next week's chemo. Like 6-8 weeks from the poison, but I'm getting surgery in that time so it's not completely resting I guess. I'm kind of afraid of going in for my treatment next week because the last time I got the B treatment I threw up on the last day. I really don't want that to happen again. It's from the one pre-chemo drug. The side effect is a bad taste in the mouth, and the taste is the worst thing ever! I guarantee there is nothing in the whole world that tastes worse than the medication. What's really weird about it is that you get it through the iv so its not actually in your mouth.

Recently I was asked by the Sarcoma Foundation of America to share my story on their blog. It was posted a few days ago. You can check it out at http://curesarcomablog.org. I'm glad that I was asked to do this because I really want to help people that are suffering from sarcoma get through it with my story.

My uncle set up a fundraiser for sarcoma research. It's called Novembeards! Check it out! http://www.crowdrise.com/NovembeardsForMike. Research is very important for pushing treatment for cancer forward. There are some really interesting studies being done on sarcoma, especially Ewing's sarcoma, and these studies wouldn't be possible without donations and grants. I hope my Aunt Diane can deal with a grizzly bear for this month. 

Lastly, there is going to be a benefit for me at Birchwood Rehab and Nursing Center on Friday November 15th from 10 am to 4 pm. This is where my mom works. It is located in Nanticoke if you would like to go. There is a lot of basket raffles and food for takeout will be available. I won't be able to make it because I will be in Philly for chemo but my brothers and my dad will be there selling the bracelets. I am very grateful for their support.

Keep all the children battling cancer in your prayers. Especially Matt, Julie, and Maya, who is getting her surgery on Friday for Ewing's sarcoma.

Last A Treatment Before Surgery!

Not much has happened since my last post. Last week I pretty much just chilled out at home for the most part. I felt pretty well, especially by the weekend. I probably could have gone out or had people over or something last week, but I've been pretty active, and I'm happy that I just kept it easy last week. If it was warmer on Saturday, I would have gone outside to shoot some hoops. On Sunday we had a family gathering at my Grandma's house. I got to see my cousins' halloween costumes. It was a fun afternoon!

Ryan and Samantha in their costumes

On Monday I had my last A treatment before surgery. My last treatment of Doxorubicin(The Red Devil), Vincristine, and Cyclophosphamide until January when I'm back from surgery. I got some dates now as far surgery, and scans. My surgery is planned for December 10th (one week after my birthday, thank God!). I have my MRI, and CT scan of my lungs on the morning of November 21st(to make sure the cancer didn't spread). I will meet with my surgeon on November 21st in the afternoon to discuss final plans for surgery based on my scans from that morning. I'm so happy that I get to enjoy both Thanksgiving(my favorite holiday), and my birthday this year feeling pretty well. The last day of my B treatment, and the conclusion of my 3rd cycle of chemo will be on November 15th, so I'll have 2 weeks to recover for Thanksgiving, and 3 weeks for my birthday.

I feel a little under the weather today much like I did yesterday. Mainly tired, taste is off, moderately nauseous(Zofran pretty much eliminates it), and hot at times(with no fever though, just feel like I have a fever). No mouth sores though. Woohoo! The nurse suggested that I suck on ice chips 20 minutes prior to receiving Doxorubicin to prevent the mouth sores, and it worked so far. Yesterday I had nothing, and today its only a little tight under my tongue so hopefully I get nothing.  I've been drinking a lot of fluids trying to get the chemo out, which rose my weight 6 lbs in one day. So I'm pretty happy with how I feel considering it is my third time receiving this treatment. I went to my neighbor's house to drop off some stuff, and if I didn't tell them that I received chemo the day before they wouldn't of known it. They thought I looked great! Maybe I'm just a freak, but this chemotherapy stuff is definitely not as bad as I expected it to be this far. Everyone, including the doctors, and nurses are surprised about how I'm just pushing through this, and how well I look. The pharmacist that works in the Oncology department told my mom when she picked up my shot that she has never seen people with as positive of attitudes as my mom and I.

I haven't seen my blood-work results since before starting chemo because they have been so good, but out of curiosity I asked for the results just to see where I'm at. They're pretty good. I suspected that my red blood cell count, and hemoglobin were low because of how I feel, and I was right. Here's a chart. WBC being high is fine, it's from the shots.

Do I look like a cancer patient, or someone who
lost control cutting his hair? A dilemma...

Cycle 2 Complete

I can't believe I'm already two cycles into treatment! When I look back on these past two months, it seems like the time has really gone fast. Last week didn't seem much more difficult than the first time that I got the B treatment. This time I listened to my body much better and went into bed around 7 every night. I also took ativan at the end of my treatment(like 30 minutes before I left) for nausea, and to help with sleep. It helped tremendously because the car ride home was probably the most difficult part of the B treatment. I would feel so sick, but it would get better when I would get home. But with taking Ativan, I was in and out of sleeping for the ride home, and I was much more comfortable. It was good that I didn't have to get Lasix this week because that would have sucked. The nurses said that I have good kidneys cause I pee like every 10-15 minutes when I get my treatment. I still get a little swelled up, but my kidneys do a really good job of getting the drugs out. They take my weight every morning, and I didn't really have my weight fluctuate too much, but some people can gain as much as 10 pounds in a single day due to fluid retention.

On Monday Joey went to the clinic to see me get treatment. It was nice that he had a day off from school, and he chose to be with me to watch me get my treatment. Joey being there helped the day go much faster for me.

This week was also the first time that I got to meet a cancer patient who is around my age. Her name is Julie, she is 21, and there all week like me. It was her first week of treatment, and some of her chemo was the same as mine. It was actually kind of funny because we were in competition for the bathroom all week. Seeing someone there who is around my age made me feel better.

Me with my chemo

Right now I feel great. I'm a little winded, and the neuropathy in my fingers is a little worse, but those are my only complaints. Saturday was a sleepathon for me. I was already feeling pretty good yesterday! I'm going to have a friend over in a few hours. It won't be for long though. I don't want to push it too hard yet. It should be fun, I haven't seem him in a while. 

I had an appointment with my oncologist on Friday after my chemo, and he was happy with how I'm responding to the treatment. He couldn't even feel Jimmy in there. He was happy with my health, and blood counts too, which is huge. The plan right now is that I'll have surgery 2-3 weeks after my third cycle of chemo, then 2-3 weeks for recovery, and finally 3 cycles of chemo. So that means I'll be done by April, and my birthday present this year will be surgery. That's pretty sweet that I'll be done in April though. I was expecting 4-5 cycles, but since I responded so well its gonna be 3. I can take a summer class this year to get back into school mode now. If you count surgery as a cycle, then that would give me 7 cycles. So if I were to compare my treatment to a week, then I would be on Monday night/Tuesday morning.

The reason why these past two months have gone so fast is because of all of the support I have. Support in the form of get-well cards, having friends over, or encouraging text messages really brighten up my day. This support really helps, and I just want to thank everyone for it. 

Joey went to my appointment on Monday

Cycle 2 Part B

Today I passed the midway point of my second B treatment. So far this week I have felt more tired everyday which was expected. I'm reacting to the chemo exactly like I did the first time. The only complaints that I have about my health right now is the fatigue, and urinary frequency. The mouth sores are healed, and I only have mild nausea right now. I took ativan for the first time today towards the end of my chemo, and it made me feel so much better on the car ride home. On Monday and Tuesday I was pretty carsick on the way home, but today I felt pretty well coming home. It's been a pretty long week thus far, but in two more days it'll be over. I'm exhausted right now, but I wanted to get something on here since I haven't posted in over a week. I'll have a longer post about this week sometime after this week is finished.

Prayer Requests:

That I continue to have my strength, and that I don't get too much more tired tomorrow.
For all of the other children battling cancer.
For Julie, a girl I met today who is battling cancer.


2 more days to go!

Quick Update

Since my last post I have felt better everyday like I thought. I'm still not 100% like I thought I would be by now, but I'm feeling much better than I did a few days ago. I'm not nauseous at all, but the mouth sores haven't changed. Things taste normal now. So i can drink my favorite liquid...water. I would say my energy right now is inconsistent at best. I'll have a few hours in the day where I feel great followed by hours of lethargy. I'm thinking this could be due to my red blood cell count being low which should be at there lowest right now(7-10 days after treatment). I hope they're not too low because I don't want to get a transfusion already. I feel like I have had more energy today since using the incentive spirometer which I got yesterday. I have been laying around too much and haven't been exercising my lungs. This tool helps get my lungs working optimally. Right after using it the first time yesterday I was coughing up crud which has been laying in my lungs for days. I also feel like I slept much better last night because my lungs are clear. My arm still feels soft from treatment. I definitely have to say that the A treatment does a better job at killing the tumor than B. My right arm is as soft as my left now. It's really amazing!

For as much as I have been laying around, I must say that I have done a lot during my little break so far. On Friday I went to the Greek Festival. I had a friend over on Saturday, and I was out for a few hours yesterday with my Grandmother. I was whipped after each of these events, but they were all so much fun.


Thank you to everyone for their prayers and support. I would also like to thank everyone that purchased the wristbands. The proceeds will go to sarcoma research where it will be used well. Keep wearing them!

Cycle 2 Part A Complete

I'm halfway through my induction phase of chemo now. I have one more part A and two more part B treatments, and then I'll have surgery followed by more chemo. This past treatment was a little more difficult than I expected as far as side effects go, but it's manageable. My treatment lasted a few hours, and I didn't feel a thing much like my other days of treatment. The one big difference between the A treatments and the B treatments is in the side effects. The B treatment makes me feel really tired and foggy, but doesn't cause too much nausea. The A treatment makes me feel really nauseated, changes the taste of food, gives me mouth sores, and makes me moderately tired. I don't feel too tired today, but I slept like all day yesterday, and for a few hours on Tuesday. The nausea/mouth sores/taste change is a big killer for me. The combination of the three makes eating not fun at all, but I have been pushing through it. Hopefully the taste change goes away because the nausea is manageable with my meds, and the mouth sores aren't too bad right now. The weird taste is more noticeable in liquids especially water. I don't notice a difference in taste with milk so that's all I have consumed the past few days as far as liquids go. The mouth sores are right under my tongue like last time, so unfortunately they weren't caused by the potassium pills like we thought. My gums aren't sore like last time, but that could change. Even though the A treatment is only for one day, the B treatment is easier to me which I didn't expect going into this.

The "Red Devil"

Another thing that I dislike about the A treatment is the amount of pills I have to take after treatment. For the three days after treatment I have to take like 15 pills a day ugh! Then, it drops to just 6 like the B treatment. The pill I really don't like is the Decadron. It is one of the pills I have to take for the three days following the treatment. It works very well as far as swelling and reducing the size of Jimmy, but I don't like the way it affects my thoughts, and dreams. For example, yesterday I woke up from one of my naps, and I felt like none of the treatment was working, and that I would ultimately lose my arm because of this. These thoughts were completely irrational, but also completely horrifying to me at that time. I know that I shouldn't think that way especially since the treatments are obviously working, but the Decadron makes these thoughts pop into my head. I didn't have any problems last nights because I took the pills at 6 and waited until 8:30-9 to go to sleep giving my body enough time to break down the drugs and prevent the nightmares. 

Now with all of my ranting about the side affects of the drugs I'm taking there is one important thing that sometimes I seem to forget....These drugs are also saving my life, and as much as I hate them I need to respect them. There will be many bad days, but also many good days during this long game. And in the end the score will be in my favor...

Cycle 2

Tomorrow I begin cycle 2 of my chemo. It will be part A of cycle 2. It'll be for one day just like last time, and I'm not too worried about it. Most of the issues I had last time weren't from the chemo, but from the other medicine I received, and getting the port installed. The medicine problem was fixed, and I won't have to starve this time during treatment so it'll be good. I'll have to take a picture of the Doxorubicin aka "The Red Devil."

I'm ready to get treatment tomorrow. In fact I feel like I've been ready since Thursday. I realize that I might not recover even as fast last time, but I know that with the support of everyone that I will bounce back. This game has many obstacles, and luckily I haven't encountered many so far. 

Yesterday I played basketball with my brother Joey. I played him one-on-one to 7. I told him to play his hardest and to not let me win. He kept his end of the bargain, and it was difficult. I could shut him out last year if I played him 100%. But now its so much harder. I barely beat him 7-6, and I was winded. I was surprised how my arm felt when I played. Remember that I am a righty and Jimmy is in my right arm so I need that arm a lot. The arm hurt the first time I shot, but it felt fine after that. I felt as quick as ever when I played, but my hops were way down. I could barely touch rim. I shouldn't be complaining because I couldn't do that a week ago. I was only half way up the net haha. I was getting that high in like 7th grade haha. I could probably use my jumping as a baseline for my overall strength during treatment. It was great to play with my brother yesterday. It was the first real physical activity I have had in a long time, and it was a real confidence booster for me. 

My New Look

I forgot to mention in my last post that I'm bald now! Well here is what I look like bald...

I don't think it looks bad at all. Here is what my hair looked like on Friday hours before it started falling out.

The hair loss was dramatic. On friday morning I noticed a little bit of hair falling out when I showered. During the day my head felt really itchy. At around 8 pm I was able to pull clumps of my hair out of my head. I was able to get about half of my hair out with just my hands, but the other half wasn't ready at all so I just shaved off the rest. RIP my hair haha. I'm not really ashamed of losing my hair which surprises me because I was obsessed about losing it in the first place. The only thing that bothers me about my new bald head is that it gets cold sometimes. But I already have that covered with these chemo hats that my Aunt Diane bought me, and the skull caps that Aunt Chrissy bought me. They are a real lifesaver. They keep my head warm, but not too warm like a winter hat. And they are so comfortable.

This week has gone really well for me. My cold is almost gone, and the little fever I had earlier in the week is gone. I had two of my friends over yesterday for a few hours. It was really good to see them. I need to have them over again soon. Keeping things as normal as possible during treatment really helps me not go crazy, and playing video-games and eating pizza with my friends yesterday was what I needed. I felt a little tired after they left so I slept amazing last night. 

The only complication I had this week was my joint pain on Wednesday. One of the side effects of my Neupogen shot(which helps my bone marrow produce white blood cells) is bone and joint pain. Well I had joint pain alright. My knees started to bother me around noon, and got worse throughout the day. By 6, my knees felt like they were being swung at by a baseball bat every 10 seconds. It was probably the worst amount of pain I ever had. Not even a Vicodin was able to stop the pain. Fortunately the pill did put me asleep. And in the morning I had no pain. Thank you God! I have my last Neupogen shot today which makes 7 days in a row with only one bad day of side effects from it. The oncologist told me to take a claritin before the neupogen shot to prevent the symptoms, but that day it did not work. Other than that one day I would definitely say that claritin is effective.

I'm going to take it easy over the weekend. I start my second cycle of chemo on Monday. This will be Part A of cycle 2. I will only be there for one day this week, and it'll only be for a few hours. I already got this treatment before so I know what to expect as far as the procedure goes. So I'm not nervous. Hopefully I'll recover as quickly as I did before. The arm still feels soft which I'm happy about. I might get on the treadmill for a few minutes today. I haven't exercised in a while, and I will benefit from a little run. 

I added a slideshow to the bottom of the page of the blog. It is a collaboration of all of the pictures on this blog in order. I also added a follow by email widget to the top right. You will be notified of new blog posts by email if you submit your email there. I'm not going to change the look of the blog. I like the simple look of it, and most importantly it works well.