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.

Cycle 1 Compete

Wanted to get this post on here earlier, but I have been really tired the past few days. Fortunately, today is the best I have felt since before chemo started last Monday. I got a really good night of sleep last night, and I have been eating like a pig today haha. It's a really good thing that I'm constantly hungry now because I need to get my weight back since I lost 5 pounds since last week. Now to comment on last week's treatment...

Monday was the longest day. I arrived at the University of Penn at Radnor at roughly 9:15, and we got in at 9:30. This was good because my appointment was at 10:00. This was the case everyday. I live 1 hour 45 minutes away from the facility, and we leave at roughly 7:15 just in case there are accidents. So if there aren't any delays, it's an early arrival. Penn at Radnor is only 15 minutes away from the facility in Philadelphia, but with traffic its an added 45-60 minutes. In 5 days that saves a lot of time and makes it a lot easier for me. There isn't anything bad I can say about Penn at Radnor. I really like it there. The nurses are so nice. It almost feels like home there. The rooms don't feel so hospital-like. So the first thing I needed to get performed on me before starting any treatment at all was getting my ports accessed. This was my first time getting this done since I got the drugs through my arm last time. Getting the ports accessed was a little scary for me since the nurse thought I already had it done before since I was already on my second treatment of chemo. So she didn't explain much and just stabbed me in the chest with the two needles. And its no exaggeration when I say stab either. There has to be some force in order for the needle to go in the ports. The first one didn't hurt at all and the second felt like a bee sting. She felt bad afterwards, but it was all in good fun.

This is what I had in my chest all week

After that I got the port flushed, which I hate so much, and unfortunately this needs to be done twice each day for the days I get treatment. The reason I hate this is because they flush it with saline, and oddly enough you can taste it. I can almost throw up as I'm thinking about it right now ugh! Then they get blood-work. After getting blood-work, the wait was long as they needed to do a lot of tests on it. Treatment didn't start until 11:30. First I got treated with some steroids and other pre-chemo drugs. Then I got my ifosfamide, and etoposide; the two chemo drugs. The drugs run one after the other, and it takes 3 hours for them to get in my system from the bags. The time goes fast. I usually just play on my phone or tablet, or just eat. I can't get too comfortable through. This is because one of my chemo drugs has been proven to cause bladder damage.To combat that they give you a ton of fluids. In the last two hours of treatment I get 2 liters of fluid. So you can probably guess what happens right? Yes, lots of trips to the bathroom. Like once every 10-15 minutes. So once this was finished, I got flushed, and got sent home. I was hungry since Monday was the only day that I didn't eat lunch while getting treated. My mom and I went to Panera Bread. I got the potato soup in the bread bowl. I wasn't too thrilled with it. I don't know why people go crazy over Panera it's overpriced and really not that good. The bread bowl didn't really taste that good, but the soup tasted good. I  would just get the soup instead of the bread bowl next time. Finally we made our trip home. I got home by 6, and just went to bed. Monday was probably the second most difficult day of the week for me. It was just so long.

The rest of the treatments for the week were much quicker. This is because I didn't need to get my ports accessed again, and the blood work didn't need to be run through as many tests. As a result, I got out by 2:30-3:00 every day. Tuesday and Wednesday weren't too bad. We tried out some different places to eat. I really like the food court at Radnor. Its across the street from the hospital, and everything I got from there I liked. I got an Italian hoagie, and a shrimp bisque. Both were delicious. The other places weren't too good though. Everything ran smoothly on tuesday and wednesday except the fact that I caught a cold. My brother caught a cold on the Friday before I started treatment, and I feared that I would catch it when treatment started. I think that's how it's going to be for me during the treatment. If I'm around anyone that is sick, I will probably get what they have. As I'm writing this post, both him and I still have it. I feel like I'm getting over it quicker than him which is puzzling.

Then came Thursday...This was by far the worst day of the week. Right when I woke up, I knew things were going to be slow. I woke up with a sore throat, diarrhea, and extreme tiredness. The bad part about the tiredness part is that I couldn't sleep even though I felt like I needed it so much. The day itself was just as long as any of the days prior with the exception of Monday, but mentally it was my hardest challenge. If there were any days where I felt discouraged about getting treatment; it was Thursday. I'm usually a very talkative person when I'm around my closest friends and family, but even my mom commented that I said like 10 words the whole day. I wasn't myself in the slightest that day. I didn't eat much either. When I got home I took an ativan and fell asleep for hours. I woke up around 8 giving me roughly a 3 hours nap because I needed to take my meds. I went to bed after taking my meds.

Overnight a miracle happened. I felt rejuvenated. Like how I felt on Monday before treatment rejuvenated. I felt full of energy and ready to go. Everyone that I saw that day was surprised how I looked on Friday especially my parents. They didn't expect me to look like that, they expected me to be even worse than Thursday. Thank God for this. Everything about Friday went well for me. My oncologist was happy with my progress. Jimmy shrunk in size. I would have to estimate that he is about half of his original size but I don't know. What I do know is that this is the best my arm has felt in at least 6 months, maybe more. The area is actually squishy now, and not so hard like before. Visibly the arm doesn't appear much different than my other. There is only a tiny visible difference in the definition of my muscles in my arm. If Jimmy already died this much, what will be left of him in two more months? Nothing? It will interesting to see. The only problem I have now is even though I did say that its smaller and all, it actually is more painful. I think this is because the muscles aren't used to being able to function normally and now they are regaining that ability. I think this will go away with a little time. But I don't see myself shooting hoops this week even if I have enough energy to do it.

The weekend was more difficult than I expected, with Sunday being worse than Saturday. I was really congested, and like Thursday;really tired. Fortunately for me I didn't have treatment, so I listened to my body and just slept.

Like I said earlier in this post, today is the best I have felt in a week. Today I feel more alert. And that is the reason I could do this blog post. I tried to do this on Saturday and Sunday with no success. I would get stuck right at the beginning and then I would get really tired. It was like my brain couldn't take any processing. My brain was essentially crashing like a computer. Well today, my brain rebooted and it is running like I want it to. I did this whole post in one sitting and I don't feel a bit tired. Just hungry haha. Well, thats all for now, I'm going to eat some pizza.

Thank you to everyone for the prayers and support.

Big Week Ahead

This week will be the second part of my first cycle of chemo. It will be everyday from Monday through Friday for 4 hours. I'm a little nervous because this will be my first time getting these drugs, but I think I'll be alright. If this treatment is anything like my last treatment, then I expect to feel crappy for the next week or so, but I'll get better  each day for the following week. Right now I feel great. The sores in my mouth are mostly healed, and I haven't needed nausea medication in days. I went to the mall yesterday, and felt pretty good. I still have my hair! I expected to lose it by now. I'm also pumped about how my arm feels. This is the best its felt in like 2 months, and I've only had one treatment! The area around Jimmy feels softer. I can shoot a basketball now with only minimal pain which is a plus because basketball is my favorite way to exercise.

The only bad things about the past week are as follows... I made the switch from the pill potassium to the liquid potassium because it was so difficult to take, and I think those pills were the root of the mouth sores I had. Unfortunately, the liquid tastes so bad, but I haven't skipped any doses at least. Even diluted with a cup of fruit juice, it still tastes terrible. And I will have to take that twice a day for the duration of the treatment plus 3 months after treatment. Ugh! I'm getting used to it now though.
Also, I got a call from the orthopedic surgeon, and she said that upon further analysis of the images, the tumor is deeper in the bone than she initially thought. They ruled out the surgery that I  would have really liked to have gotten. Now they will need to remove the humerus, and replace it with a rod. I shouldn't be really upset though because this will give the cancer less of a chance of coming back. I think this will lengthen recovery, but I'm not sure. These questions can't really be answered yet because its still a long while off before surgery.

The only concern I have with this week is my energy. Right now I'm full of it, but I know that each day is going to take its toll on me. The plan right now is to go back and forth each day, but that might not be possible by the end of the week. Each treatment is 4 hours, and it takes 1 hour 45 minutes to get there. My treatment begins at 10am so I don't plan on being home until around 5. This is pretty long. I'll just take it one day at a time. I pray that I'll have the strength and energy to get through this week.


Thank you to everyone for the support! It is really helping me get through this roadblock in my life. The prayers are very much appreciated.

5 days into Treatment

Today marks the 5th day of treatment for me. In the past few days I haven't had much pain other than the irritation in my mouth. It isn't bad enough to stop me from eating completely, but it is bad enough to stop me from eating specific foods. For example I couldn't eat pineapple slices or V8 juice because it irritated the salivary glands under my tongue so much. Rinsing my mouth with a solution of 1 quart of water, and 1 teaspoon of baking soda, and salt every hour or so seems to help a lot. One thing that is taking me a while to get used to is taking so many pills throughout the day. On Friday I took like 18 pills in one day! It doesn't help that I'm terrible at taking pills too. I'm having a very difficult time with the potassium chloride pills because they are so large and taste so bad, so I'm going to make a switch to the liquid version this week. I only skipped one dosage on the potassium pills so far, but with the sores in my mouth getting worse; it will become increasingly difficult to take them as time progresses.

Yesterday I had a lot of anxiety and didn't sleep that well last night as a result. One dream that I had last night that may sound funny to hear it now, but was absolutely terrifying last night, went like this...
I went to get my second dosage of chemo and was denied my treatment because the doctors said that I didn't have any veins. They were so freaked out by it that they told me to leave the hospital and to never come back. I tried to come back for the next treatment, and the doors were locked and I couldn't get into the hospital. Before I woke up from the dream, I was pounding on the doors in frustration trying to get into the hospital to get my treatment, but to no avail. It was honestly the scariest dream I ever had, but I'm laughing as I type this right now because of how unrealistic it really was. I just need to calm down because there has been so many unknowns that I would love to have answered, but only time will answer them. My biggest fear is that the chemo will not work on my tumor, but I can't be thinking like that. The doctors said that I could see results after my next cycle of chemo, and I pray to God that I do. I want this tumor that I have named Jimmy to die already.

First Day of Treatment

On Wednesday, September 4th I received my first doses of chemotherapy. Here is how it all went down...

Me and my mom left the house at roughly 6:15 as it takes 2 hours to get to the University of Pennsylvania in Philadelphia from where I live. Unfortunately with traffic we got there right on time for my 9 o'clock appointment. It was no problem though.

First I had some tests done such as more blood work, and measuring my weight. Then, I was sat down in this room that was pretty public with other people also receiving treatments there. The nurse came over and asked me if I wanted to be in private room, and I quickly said yes. The room was a simple room, but it was very nice to be in there especially for the first treatment because there were a lot of people we talked to from the U of P team and it is easier to focus in a quiet room. 

Since I wasn't scheduled to get my port installed into my chest until later that afternoon, I got my first chemo treatment through my arm. It didn't seem too bad at first, but there are a few shortcomings to not getting the treatment through the port. 

1. The treatment takes longer because the port allows up to 2 IVs to run at the same time(the treatment took 3 hours).

2. My arm got really irritated with the chemo meds that they game me(which happens often when it is administered through the arm.) The nurse did everything she could do, but sometimes it is inevitable.

My arm hurt a lot after the treatment

I didn't feel any different as I got the drugs, but I did have to pee a lot. And when I say a lot I mean it. I went to the bathroom like 6-8 times in a 3 hour period. The drugs themselves looked a little bit intimidating like there is one that is nicknamed the "red devil" because it is dyed red and it is the strongest chemotherapy out there. It also turned my pee red which was kind of funny. My mom was upset when I was getting the treatment, which is normal, but I wasn't. I was happy to finally get going on the road to recovery.

So after getting my treatment, I went to the U of P hub. I got my port put in there. There isn't much for me to say about this because I got anesthesia and I was out for the whole thing. One funny thing to note was how nervous I was before it. Before they injected me with the anesthesia, my heart rate was 120 bpm. Even though I was cool and calm on the outside, that wasn't the case at all. The surgeons had a good laugh about that.



The most difficult thing about the whole first day of treatment was the fact that I couldn't eat or drink until I got the port installed. When I was finished with everything I was very drained of energy, and I felt like garbage. It was a long 3 hour trip back, but I fell asleep as soon as I got home.


Luckily for me, the next day was a completely different story. I didn't feel nauseated at all; in fact I was starving and I pretty much feasted all day. I felt back to normal after eating. The only pain I had was where the port was installed. I also didn't like the fact that I couldn't shower either.

Today was a bit more difficult than yesterday. I was nauseated big time especially in the morning hours.  The anti-nausea drugs were a big help today, and I was able to enjoy my favorite pizza later in the day because of the meds. Tony's extra cheese pizza! I also got a shower today, but I had to cover the wound so it wouldn't get infected. I felt so good to be clean!

Now I have a break from chemo. My next treatment begins on the 16th and will be one week long. In the next week or so I will see some physical changes such as hair loss. I'm not looking forward to potentially losing my eyebrows haha.

First Entry!

Today is my first post on my blog about my battle with Ewing's Sarcoma. The main purpose of this post is to get my readers to know a little bit about me, and to provide a little background of this cancer that I have.

First and foremost I am 19 years old, live in a family of 5 with two great younger brothers, and loving parents. I love to play sports, video games, and I'm very passionate about technology. I don't really have a favorite sports team because I don't like to watch sports, but my favorite sport to play is basketball. I'm not much of a bragger, but I am very good at basketball because I'm very athletic. I can dunk easily. Check it out... mike's dunks on youtube. I am a sophomore student at Penn State University majoring in Computer Science. I'm also from Pennsylvania, in the small Mountaintop area. 

Personally, I am a very reserved person, I like to keep to myself. It might be surprising to you that someone that is so reserved would make a blog about such a private thing as their health, but I don't see it as that at all. I see this diagnosis of this rare cancer as an opportunity to spread my experience to people that are newly diagnosed and may not be sure of how it will affect them. You see so many bad stories of cancer patients in the media, and my goal is to give people a good story. 

My Family

Me, my cousins, and Grandma

Now onto what this blog will be mainly about...my battle with Ewing's Sarcoma or as I like to call it my game. I think of it as a game because all games have a solution, and my solution is my treatment, but unfortunately they also have ups and downs. I am prepared to come back from these downs as I'm a very competitive person. I attribute all of the success in my life to my competitive nature which is the quality I am most thankful to be given from God. 

Ewing's sarcoma is an extremely rare form of bone cancer that mostly effects children 10-20. It is caused by a chromosomal mutation that occurs during early development. So when I was born, I was destined to have this. It is so rare that only about 5 out of 1 million kids aged 15-19 which is the most common age to get this.

So how did this all come about? Back in October I began to notice a tight feeling in my right tricep/shoulder area. I didn't think much of it because I was lifting weights, and playing basketball and thought it was just a pulled muscle. I only noticed the tightness when I used my laptop with my crappy posture that I have been told about so many times haha.

In the winter like late December the pain was stopping me from lifting really heavy objects such as making a snowman, or lifting weights which is when I took a break from lifting. I began to ice the area and take Advil twice per day which helped a lot. I thought the pain was gone for a while, but I also wasn't doing much physical activity until February when I performed yoga in my stress management class and could do the poses as effectively in my right arm as my left arm. I also strained my arm one day when I pulled my backpack over. At this point I began to complain about this pain to my mom, and  I agreed to get it checked out after the semester as I was very busy with school. So the year finished and I topped my goal of a 3.7 cumulative GPA with a 3.8 GPA. I then scheduled an appointment to get my arm checked out by a local orthopedic surgeon. Going into my first appointment, I still didn't think anything was seriously wrong with me as the pain was extreme, and I could do pretty much anything I wanted to except lift weights and pull lawn mowers lol. So after the first appointment I had an MRI, and I returned to the doctor in 5 weeks, one week after my family's vacation to Ocean City. The doctor wasn't very sure what it was. He thought it could be a tumor, a hematoma, or something completely else. He sent me to an orthopedic oncologist at Geisinger. When I met the doctor in late July he ordered another MRI as the first one only covered about half of the mass. When I came back in 2 weeks, I was told that it was a true tumor that was 6.9 cm in diameter and it needed a needle biopsy to see if it was malignant or benign. It was about the shape and size of a mini hot dog. This began the most stressful month of my whole life. In early August I had the thing biopsied and got a phone call from the doctor at Geisinger. He presented to me the preliminary results, which stated that the mass was a malignant small round blue cell tumor, probably a synovial sarcoma or Ewing's sarcoma. This was devastating news to me because I knew sarcomas as a whole are extremely rare, and some of them are very hard to treat. In a few weeks due to errors at the hospital I finally found out what it was...Ewing's Sarcoma. I was so happy; not that I had cancer but that I didn't have Synovial Sarcoma. I also had my PET/CT scan to check whether the cancer spread. Fortunately for me it didn't and I thank God for that as with the size of the tumor and other factors it usually would have spread. It was a stage 3 Ewing's Sarcoma which is very treatable.

On July 29th I had my second opinion with the University of Pennsylvania. They agreed that it was Ewing's Sarcoma, and also everything else that my initial diagnosis stated with one exception. The doctors at U of P stated that the tumor began in the bone and grew outward, which changes the surgery significantly.  Originally the surgery was to remove one of my triceps heads, but with it starting in the bone, a portion of the bone will be needed to be removed, but that won't be for a while. I loved the doctors at University of Pennsylvania and decided to get my treatment there. My treatment began yesterday which I will write about in a separate blog post. 

Onto the treatment plan...It will be a long 9 month process with many ups and downs. It will be 3 months of intense chemo followed by surgery, and ending with more chemo. There are 5 drugs in the treatment in 2 week cycles. In the 'A' cycle, I get 3 of the drugs over a few hours, and  in the 'B' cycle, I  get 2 drugs over a 4 hour period 5 days in a row. This routine will repeat for 3 months.

Wow! this was a long post...Rest assured my future posts wont be this long haha. There might be typos as I didn't really care to proofread it, so no grammar police please, haha. 

In these next 9 months I know that I will change physically from the treatment, but that will be mostly temporary. More importantly I will come out as a changed person. I wont look at life the same was again and I hope by reading my story, you will take what you can from it.