Tag Archives: relay for life

Chemo Round 2

“You’re gonna hear me roar!” – Katy Perry

My woman.

This weekend was very tiring but fun. I went to a Red Bulls game and was able to stay up until 11 PM, which was a new record lately. We got tickets in the front row right on the corner flag. These tickets were provided to us through the Red Bulls in conjunction with the delicious Applebee’s fundraiser. I was able to go to the game with my mom, dad, Mr. Nolan, Don Nicholls, Caitlin, Maddie, and Alley. IMG_2355 IMG_2359 IMG_2361 IMG_2365Hannah wasn’t left out she went with her soccer team! The fun didn’t end there as I also went to an Eagles preseason game thanks to Child Life. IMG_2369It was my first NFL game and a bucket list item! Earlier that week I also had a friend visit from school and my old PT stopped by to see how I was doing. She brought goodies (Kit-Kats).

Towards the end of the first round of chemo I started to loose my hair in clumps. I did not want to blend in with Jade and Treasure so we shaved my head as a preemptive strike.

On the way to Philly this week I tried out an audiobook app. It worked pretty good so maybe I can get back into reading since the chemo makes my eyes tired. We believe the chemo may be working because my symptoms seemed to have plateaued which is what the doctor had hoped for. She said progress will be slow but people have told me that I have been slowly improving it is just hard for me to notice it. I started the second round of the chemo this week and will be on it for three weeks total. I am going to take a week off again and then start a new chemo and then repeat the cycle.

I created a Relay team, Nathan’s Neuroninjas, a Quinnipiac team, for September 11th. There I hope to give the opening speech but I don’t know how long I will last that night. I should be off of a round of chemo by then.

I am receiving some PT visits at home to try to get my mobility back slowly but it is hard without any tumor shrinkage.

I saw Mackenzie for the last time today as she is leaving for school tomorrow. It was very emotional but I am very excited for her. I am very proud and I know she is going to have a good time.

I recently had a dream that put new optimism on my situation. I really hope the message I received has some true meaning behind it.

I hope everyone is staying cool. It is hotter than Hades outside.

Fighting Back

“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
(Starting right now) I’ll be strong” – Rachel Platten

This picture is probably the happiest I think I have looked in weeks. It was a great time.
This picture is probably the happiest I think I have looked in weeks. It was a great time.

This was one of the theme songs played at Relay for Life and thought it applied very well to me as I am again embarking on the PT/OT journey to fight back against whatever is causing my issues and to not only get to where I was a month ago but hopefully even further and quicker since I continued to exercise even after PT and OT ended last time. I was really looking forward to be able to participate more at Relay but I have just been exhausted lately trying to recover.

Taking a rest.
Taking a rest.

I met a woman who was a two-time cancer survivor and she seemed to be doing great now, which was very inspiring. I got emotional before the opening survivor lap as I was one of the few in the front for being diagnosed within the year and I broke down when told to face the survivors behind me because I know they probably understand how I may feel and that they have done this before and it is comforting to me to know that they have done it and I can do it too.

Before the opening survivor/caregiver lap.
Before the opening survivor/caregiver lap.
Before the opening survivor/caregiver lap.
Before the opening survivor/caregiver lap.

I am also a crybaby so seeing me cry is nothing new.

Together, my team raised $2495 and we placed 6/32 for fundraising! Pretty impressive for a 12-person team and for the other generous donations I received!

Fighting Back lap.
Fighting Back lap.
With the URI Ram mascot.
With the URI Ram mascot.
Relay camp site with rising star banner.
Relay camp site with rising star banner.
Luminaria.
Luminaria.

I also won a facial spa day raffle and you can bet that I’m going to take advantage of being pampered, maybe even receive a pedicure because why not?

I really want to be exercising in the pool so I am probably going to invest in an Aqua Jogger or life vest so I can do some aerobics to try to get my muscle range back. I also believe the water may help with my left leg and hand muscles as I really want to be tying my shoes again, text with both hands, and kill some free time on XBOX. Losing some of this independence again is killer and I really want it back. I also want to take advantage of the golf membership I was awarded as that was a lot of fun and I want to get better before I hopefully head off to school.

The soccer season has finally come to a close and I am proud to say I had lots of fun. The girls worked hard and impressed me along the way and if everything works out maybe I can return at the end of next spring to help out and hopefully play around a little. I have been following the World Cup but have been trying to think of a new sport I can try to get involved in while I recover that is less physically demanding yet competitive. I already ruled out competitive eating as I think steroids may disqualify me but I want to have something challenging on my plate. I finished my summer class and did exceptionally well and am very proud of myself as it also helps reassure me that I can be ready to go back to school.

I have also signed up on the social media app Instapeer to connect with other cancer survivors/caregivers to help build a support system and chat with other kids in similar situations. Now that most of my schedule has opened up my current plans are to finally finish the Hunger Games book I put on hold for my class, catch up on Netflix, and most importantly stretch and exercise as I just set up my first appointments back at therapy, thankfully this time they are both local. I just want to be able to get back on my gym grind and work on the beach bod!

Recovery Again

“I don’t want to be anything other than what I’ve been trying to be lately,
All I have to do is think of me and I have a peace of mind” – Gavin DeGraw

My current goal is to try to get back to where I was. I was back at the hospital Thursday because I was having trouble with coming off the steroids and I have increased back to 6mg of steroids a day and am going to have to work the muscle memory of my left hand and foot again. It has set me back again to having trouble buttoning my shirt, tying my shoes, and typing but thankfully I only have a week left of class to work through. I am hoping though that since I have overcome this before and already have some muscle built back up that it won’t take as long to recover. It just stinks because two weeks ago I felt the best I had in a while and now I have fallen back.

Yesterday I played my first round of golf at Water Gap Country Club, 18 holes too! I am still feeling the exhaustion in my feet, calves, and back. I didn’t too badly considering the circumstances and the struggle of holding the club with the unresponsive left hand. Now that I have a membership there I hope to be back because I feel that once I regain some strength I can offer some good competition. It was the 7th Annual Golf Benefit for “Cure for Kids” and was sponsored by Warren County Forest #14 Tall Cedars of Lebanon. It was nice to see some friends and relatives there supporting me and meeting a bunch of new people that I hope to see next year when I go to support the cause and get my game on. I was blown away by how much money was raised and the people who donated their raffle and competition winnings back to me. I also enjoyed seeing all the signs at the tee boxes.

Team Nathan.
Team Nathan.
IMG_0708
My golfing foursome at the final hole: Uncle Steve-o, Ben, me, and Mackenzie

IMG_0684 IMG_0687 IMG_0689 IMG_0692 IMG_5542IMG_0690IMG_0693 IMG_0694 IMG_0700 IMG_0702 IMG_0682IMG_9765IMG_5026IMG_9545IMG_0512IMG_8056IMG_9440IMG_6022IMG_6456IMG_3016IMG_5784IMG_4778IMG_5432IMG_7139

Next on the agenda is Relay for Life this weekend in Rhode Island on my team Nathan’s Neuroninjas! Hopefully it’ll be easier for me to walk around since I plan on being active in my third Relay; it’s my first time as a captain though. This upcoming weekend also marks the end of the U15 girls’ travel soccer season and hopefully we can close out strongly. Once my class and soccer end I hope to try to get back to the gym and modify my workouts to get to how I felt mid-May.

I really had a great time at the golf outing and encourage anyone to participate next year! Even if you don’t consider yourself that great of a golfer there is yummy food, fun events, good music, and just a fun summer activity with friends to support a cause.

The Results Are In…

“I feel good when I wake up in the morning” – Jay Electronica

The results are in and boy they are a relief! The doctor was happy with the results, which always makes me happy. The tumor has continued to shrink and although we don’t have measurements like the last MRI the oncologist pointed out that the amount of fluid that is seen in the tumor and affected surrounding areas is decreasing too, which is a good sign. The tumor somewhat looks like it is condensing on itself. We also met with a geneticist to discuss a blood test to test me for certain genes that may tell us the cause of the tumor.

The Gourmet-to-Go event at the Chelsea was a delicious success and it sold out! It was nice seeing, meeting, and greeting every one there. It was heart-warming to see the support and the chefs did a great job on the food!

As a reminder, if anyone wants to join my Relay for Life team in Rhode Island on Friday June 19 – Saturday June 20, here is the team link: http://main.acsevents.org/site/TR?fr_id=65194&pg=team&team_id=1843349

And this is the link for the event with details: http://main.acsevents.org/site/TR?sid=128433&type=fr_informational&pg=informational&fr_id=65194

Treatment Starts!

“Ding, it’s the second round” – Eve

Today was the first day of treatment. It all started in the car. Obviously I was very excited, and nervous because I didn’t know how it would turn out. There is a chance the tumor may swell and set me back a little, but I am trying not to focus on that. If that does happen I know I can get back to where I am now. It is just frustrating that my progress would be halted.

I started with the chemotherapy at 11:30am in the car with 8 pills … with help from some trusty applesauce. It was all good until the 8th pill fell. To be honest I’m not sure where it went but I just know it didn’t go in my mouth. It sent Treacy Lewander to scavenge the car floor for it. After that ordeal we arrived at HUP (Hospital University of Pennsylvania). We waited in the waiting room and chatted with the Child Life Specialist, Mel, who explained what was going to happen during radiation. I still think her job is awesome. From there, I got wheeled into Linac 5 that had a beach theme, a very nice touch. There they strapped me to the table and put my mask on, that I made a week earlier. The mask is very cool, it is made of a plastic mesh, which they softened in hot water and placed over my face. It then forms to my face and after about a half hour it hardened. The most annoying part is the mouth guard I have to keep in my mouth. Today was a little longer because they had to do some image testing and they used green laser to make sure I remain perfectly still.

Now when the radiation actually started, I could actually smell and see it, which is very rare. It was more a taste of pennies in the back of my throat than a smell and I could see a small blue light, even with my eyes closed. It only lasted a couple songs on Pandora, which they played “Today’s Hip-Hop Hits” for me. Hopefully tomorrow I can grab some pictures to show you guys because the machines and mask are very cool. Every time they lay me down and strap my arms in and I hold onto the handles, I can’t help but sing the song “Rap God” by Eminem. Today was a good but tiring day. I feel stronger today. I hope tomorrow is even better.

On another note, I finally started the second Harry Potter book, which I was able to read by myself a little, except only with my left eye. I am also thinking of updating my Relay for Life team to Nathan’s Neuroninjas to add a little pizzazz to it. I am also thinking of a fundraiser called Tumor Toss, a knockoff of the summer game Hillbilly Golf (also popularly called Ladder Ball). In addition, I can make some informational posters to spread awareness.