There's not much to report on other than my hair coming in really fast now. Everything else is about the same that I have been mentioning. It's really nice to see my hair coming in the way it is now. The hair is really fuzzy on my head which everyone seems to like except me.
Over the weekend we had a yard sale. My cousins, and my brother Joey worked a lemonade stand to raise money for sarcoma research. I was so happy that they did this. Thanks again guys! It was also my cousin Samantha's birthday. She's 8 now!
Nice Job!
It was really nice weather over the weekend. I have to take extra care to cover up the scar on my arm when in the sun to prevent it from burning, and also my head until my hair grows in more. A sunburnt head is not fun, I had that last year when I cut my hair too short. My arm will burn really fast if I don't protect it. The scar is still red right now. Since I have a pool, and plan on swimming a lot this summer, I bought a swim shirt (link to shirt). I won't have to worry about putting sunblock on if I wear the shirt which will be nice. It should be here tomorrow; hopefully it fits.
On June 12th I'll have an MRI, and x-ray of my arm in the morning, and an appointment with my surgeon in the afternoon. I'm not sure what to expect as far as the results from the scans go. I've been dedicated to exercising my arm, but I'm not seeing the improvement that I would have liked so far. I went outside to test my arm by shooting hoops, and it was better than the last time (which was a little over two weeks ago), but not by much. That could have been only because I really warmed up well before trying though.
Hopefully there will be more bone growth in my arm so I can move on to the next step of my rehab. My next update will be after my next appointment.
Since my last post, I have seen some improvements in my health. Here's the rundown in where I am now.
-Hair. A few days after my update on April 18, my remaining hair fell out(legs, and eyebrows). My whole body was completely bald at that point. About a week after that I began to notice my head getting fuzzy. Within that week most of my body had at least a little bit of stubble. I actually shaved my face twice in the past few weeks. Pretty awesome since I haven't shaved since September. Right now I look a lot more "normal." I was never really embarrassed in losing my hair, but it's definitely nice to have it back. Give me another month or two, and I bet I'll have a full head of hair.
-Neuropathy. I'm not sure, but I think its improving. I mainly notice it in the morning upon waking up. At this point it's not really that bad at all. The ridges on my fingernails are still working their way out. While I'm on the topic of nerve related stuff, my upper quad is still numb. I asked my surgeon about my arm being numb along my scar, and she said that's expected. I guess that means it's permanent. I'm starting to feel that this leg is going to be permanently numb as well. I can live with it though. It really never bothers me except when I get itchy in that spot. Its frustrating because I can never satisfy the itch. If I itch there, it makes the whole area just burn, and gets more itchy. I'm going to see my surgeon in a month so I'll ask about that then.
-Fatigue. I finally felt "ready" to start a little cardio this week. I went on the treadmill on Monday. I walked half of a mile, and I probably could have done another quarter of a mile, but I was getting sore. Mainly my knees, and ankles were sore. They're just not used to exercise now. My joints didn't feel bouncy like they used to, but that'll come with time though. It is definitely great to see my energy improving. This week I've tried to do 15 minutes of exercise a day. I took Tuesday off to rest my knees, but on Wednesday I dribbled a basketball for a while. And yesterday I shot the basketball for a little bit. This leads me into my last point.
-My arm. I still haven't really seen much improvement in my arm since treatment ended. I'm good with all of the flexibility exercises with the exception of just a few, but my strength is just not there. Dribbling was awkward for me, and a little painful. I can honestly say that my left hand is better than my right at dribbling now. By a lot. For example. My arm doesn't move fast enough to do the different moves I try right now. This has more to do with the strength in my arm than anything I think.
And yesterday I tried shooting. I was a little bit too optimistic in trying to do this though. Before I went outside to take my first shot; this was my expectation of what was going to happen. I was going to easily go through my shooting motion. Swish a few close shots, and then just shoot around like I normally used to. Afterwards I thought I would be kicking myself for not doing this earlier as it would not be too painful, and just an overall enjoyable experience. Well....to put it bluntly I was completely wrong. My first shot was very painful, and almost made me call it quits right then and there. I can't extend my elbow on my shot because it hurts my shoulder too much. I shot around for maybe 5-10 minutes before calling it quits. I was getting too sore, and winded. My shooting range....no more than 3 feet away from the basket. I really have to use all of my strength just to get the ball up there. I admit that I was really disappointed with that yesterday, but I'm also really glad that I went out and tried. Now I know where I stand, and I have a goal to achieve.
I think my false optimism about my arm comes from the fact that I haven't really pushed my arm to the limit yet. I had no idea what was going to happen yesterday before I tried what I did. I can get through most of my daily activities without noticing the limitations in my arm at all. But getting a cereal box out of the cupboard, and shooting a basketball are two different things. I never realized how heavy a basketball is until now. I do like what I have done this week as far as exercise goes however. It's more challenging than what I've been doing, and that's what I think I need.
My arm is really sore today, but not really a muscle type sore that you get from lifting weights. It's hard to explain. My shoulder just feels like it has nothing to give, and it's swollen too. I wasn't sure yesterday if I was pushing it too hard. How I feel today leads me to believe that I was indeed pushing it too hard. I'm going to just stick to dribbling, and walking on the treadmill until I feel that I'm ready to shoot again. That sounds like a plan right? I recorded my first shot on video; you can watch it below.
On Tuesday I was in New York City for the start of the Miles2Give tour. For those of you that don't know what Miles2Give is. It is a run around the United States to raise funds for sarcoma research. The team consists of four runners, and they will run 10,000 miles in the next 8 months for this great cause! They will run counter-clockwise starting in NYC, and end their tour in NYC sometime in December. The goal of Miles2Give this year is to raise $500,000 for sarcoma research for the Huntsman Cancer Institute in Utah. The research grant will go to a very well respected research team there. The team is making lots of discoveries in Sarcoma which is really exciting. This funding will help push that research further, and hopefully lead to better treatment in the future. Check out this video below.
Now that you know a little bit about the Miles2Give event. Here was my experience on Tuesday. On Monday my mom, Aunt Diane, and I traveled to NYC since the event started at 7:30 in the morning the next day. It was only my second time to New York. The following day we got up early, and made our way to Times Square where the event would soon begin. Good Morning America was live there which was really cool. While we were waiting I got on camera, and if you were watching the show at that time you would have seen me on it. I thought that was pretty cool! While we were waiting for the team to arrive I met Paige Peterson from the Huntsman Cancer Institute. She is a three time cancer survivor beating Lymphoma, Breast, and Brain cancer. We talked for a while, and she gave me some tips. One thing that she said was that having cancer makes you ageless. She couldn't tell whether I was 14 or 35 right now. We couldn't believe she was 60. She looked much younger than that. One important tip she gave me was to question everything the doctor tells you. It forces the doctor to think through your case even more. It took her 5 opinions from many well regarded hospitals to get the treatment she needed for brain cancer. If she didn't have her surgery, I would have never met her on Tuesday. I did the right thing in going to a good hospital like U of P. Who knows where I'd be if I had gone through my local hospital for my treatment.
Lots of pictures below:
Then "Life Elevated" (the name of their RV that they travel in) came into Times Square, NYC.
Next, I met each of the runners, and gave each of them a t-shirt and a wristband. They loved the shirts!
Me with Team Miles2Give
Then, we all held hands in a circle, and Landon Cooper(founder of miles2give) said a nice prayer before starting the run. What inspired him to start Miles2Give was his dream to run across the country, and the passing of his friend to Ewing's Sarcoma gave him a cause to do this.
Landon then asked us to travel in "Life Elevated" for their first mile of the run. That was really awesome. Inside the vehicle are signatures of sarcoma warriors. It really showed me that I'm not alone. There are many other sarcoma warriors out there. The entire vehicle was covered in writing. I didn't even know where to sign my name. I decided to sign on the ceiling. I forgot to take a picture of that though. I wrote a little message that read: "Don't stop Running," and signed my name.
Another thing to mention is the paint on the runners' faces. They dedicate each day to a sarcoma warrior. They write the person's name on their faces for the day. The first day they ran for a 37 year old man with pulmonary artery sarcoma for example.
Inside the vehicle:
The plan for the day was for the four main runners plus the volunteers to run the first mile together to Central Park. Then, they condensed that to just one of the main runners, and the volunteers for the remainder of the day. When we reached Central Park we got more pictures before saying goodbye and wishing them the best of luck.
Miles2Give in Central Park
By this time I was really tired. The combination of just finishing treatment, and the really cold weather drained me. We made our way back to the hotel, and we rested. I must say that I did surprise myself in how I handled the day however.
After some rest my Uncle Paul picked us up, and we went to his work for a tour. He works at CNBC, and that place is awesome! It was interesting to see all of the technology that goes into broadcasting the channel. It was really a great experience to end the day with.
My day in NYC was a really great one. It was the most fun I have had in a long time. It was so wonderful to meet such amazing people who are so genuinely interested in helping all of us sarcoma warriors out there. When I met these people it was immediately evident in how passionate they are about this great cause. They talked to us like we were family.
As I've mentioned before sarcoma gets the least amount of grants from the government of all cancer types which really hinders the development of new treatments. Like Landon said, "Sarcoma is the least funded cancer in the universe." There are many great scientists out there who want to create better treatments for sarcoma, but can't because they don't have the necessary funds to get their research projects started. And that is a very sad reality. Many types of sarcoma don't even have a standard treatment while the more common types of cancer have 2nd, 3rd, and even 4th lines of treatment. Miles2Give gives us all great hope for a better future by raising this much needed funding.
I hope that by the time they make their way back to NYC in December that I can be running with them. That is my goal...
