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. Hannah 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. It 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.
“You were made to live a good life and that’s what I believe,
So hit the floor say a prayer start working you got to do something,
It’s alright to crawl before you walk it’s alright to walk before you run,” – Mary Mary
I began my new round of chemotherapy Monday. If there is any progress the doctor said it would be slow. I am doing this chemo for three weeks then switching to another for a couple weeks. The first will hopefully stop the cancer from growing and the second will hopefully shut down the growth pathways. I am just extremely exhausted lately and am just tired from everything. Even waking up is tiring and my body is just sore everywhere. I really hope it begins to work for me.
On the flipside, I caught up with my Beads of Courage and it looks so cool! My family spent Saturday in Philly at The Art of the Brick then we hit up Geno’s for cheesesteaks and Franklin Fountain for ice cream. It was an awesome day!
Wednesday, Mr. Nolan set up a wireless TV and we ate wings and pizza outside during the USA game! Sadly they lost their chance of making it to the finals.
One last reminder that the Hackettstown Applebee’s fundraiser is this Sunday 8-10! I hope to be there!
This is my 30th blog! I’m surprised many of you have stuck around with my droning this long (maybe you are still here for the pictures), although I do enjoy journaling and sharing my experience and just writing in general. During one of my recent sleepless nights I had the idea to write a short story to pass the time, as inspired by my steroids and sleeping pills but we will see if I really follow through.
Time for the news… I am eligible for the Duke trial but am currently locked out on the waitlist. This approaching Monday I am meeting with my oncologist to perhaps immediately begin a cocktail of chemotherapy oral pills that will hopefully boost each other’s effectiveness to attack the tumor and combat my symptoms again. In the meantime, hopefully the trial could open for me to join. I am tired of waiting and doing nothing and watching my independence slip out of my grasp again. I may be exhausted but I won’t back down if I still have some energy to fight. I don’t want to wait too long and let the feelings of despair and hopelessness overcome the positivity I am implementing in my battle. I am also learning how to modify my diet as that has proven effective for fellow cancer patients. Reiki has also yielded me strange results lately as focus on my left arm makes me more emotional while focus on the left foot clears my mind and soothes me. I am also thoroughly enjoying my occasional massage! One day I think I deserve a whole spa treatment.
I recently received the okay to drop from 12mg to 10mg of steroids a day. This has greatly atrophied my legs again and weakened my knees and I am back to the wheelchair for now. Like a phoenix, I said, I have to wither before I grow. It is just very frustrating to have to watch my progress deteriorate before my eyes. The lack of sleep is also taking a huge toll on my overall body exhaustion.
Good news? I received another scholarship but for $500 but I’m not complaining! I’ve also had the CONCACAF Gold Cup keeping me going but am missing my first USA game tomorrow for The Art of the Brick exhibit at the Franklin Institute Science Museum. And maybe hit up some world-famous cheesesteaks! I’m not complaining! I cannot wait until I can return to cooking!
Since my physical activity has unfortunately significantly decreased I have stepped up my reading and Netflix game. I flew through John Green’s The Fault in our Stars book and couldn’t put down the Shane Kuhn authored raunchy assassin comedy The Intern’s Handbook and am excited to begin his newly released sequel after I begin Go Set a Watchman by Harper Lee. I am also nerding out on the Halo video game series books. The Magicians book series is also on the list. I am going to be busy this fall considering that mom and I may try our hand at German Rosetta Stone. On Netflix I cannot find a reason why Freaks and Geeks was cancelled after one season. My sister and I are currently sucked into Orange is the New Black, yes we are a little behind the times. I just finished the Star Wars movies for the first time and I would argue that the final movie made, Revenge of the Sith is my favorite although most would like to disagree.
As I don my soccer ball eye patch, I am to work on my Child Life Beads of Courage to one day share my complete and colorful journey with anyone interested. Also, do not be afraid to ask me about the disease if you are curious on the process. I would be curious, too.
There will be a fundraiser at Applebee’s in my benefit. I have worked them before, it is a great time!
Here is the info:
INDEPENDENCE SOCCER CLUB
APPLEBEE’S FLAPJACK FUNDRAISER
$15.00 per person
July 26th, 2015 8am-10am
225 Mountain Ave. Hackettstown, NJ 07840
Meal includes: Pancakes, sausage, scrambled eggs and a beverage (coffee, orange juice, soda or tea)
All of you know our longtime travel registrar and U-15 Comet coach, Dan Orsini. His son Nathan was diagnosed with a brain tumor several months ago, while in his sophomore year of college. His tumor type is a Diffuse Intrinsic Pontine Glioma and is located in the pons of the brain stem. Nathan has completed radiation and is actively investigating clinical trials and research opportunities, as there are not any current treatment plans specific to his condition. As he continues to rebuild muscle strength lost due to both the tumor and the biopsy surgery, it is his intent to return to Quinnipiac University in the fall for his junior year.
Nathan played for the Independence Soccer Club travel teams from U-10 to U-19, at least one season every year since 2005. He is a TOPSoccer coach (certified through NJYS), a grade 8 referee, and an F license coach. He has been the assistant coach for his younger sister’s U-15 team this spring. Nathan was a 2013 recipient of the Bob and Matt Keegan Memorial Scholarship. In high school, Nathan played defense and midfield. He played intramural soccer at Quinnipiac University. Nathan likes the Red Bulls and is currently cheering for Sydney Leroux in the World Cup.
We have 300 tickets to sell, so please help spread the word! To purchase tickets, please email: firstname.lastname@example.org. Breakfast ticket checks are payable to: Independence Soccer Club. For each ticket sold, Nathan will receive $11.00.
If you would like to contribute, but are unable to attend, checks may be payable to: Nathan Orsini and mailed to: Independence Soccer Club, PO Box 32, Great Meadows, NJ 07838. We also need adults 18+ to help serve, so email us today to volunteer!
We are offering prizes to our top Independence Soccer Club ticket sellers!
First Place – Red Bulls Tickets generously donated by the Red Bulls
Second Place – 1 Free Travel Registration (value $115) or 2 Free Recreation Registrations (value $100)
Third Place – Adidas Brazuca Soccer Ball
We are asking every player to try to sell at least 3 tickets, so we can reach our goal!
Please share this message with your family and friends. Thank you for your support.
I met with the doctor at Duke University and he thinks I could be a good candidate for his clinical trial. The only thing that stinks is I’m first on the waiting list, which could be 1-5 weeks and I am ready to start! I just have to pass a few preliminary tests to get in. Once in, I will be traveling frequently to Duke for check ups, especially the first two months where they decide if the treatment is effective for me. Theoretically, the oral pill I’ll be taking turns off the ability for the cancer to reproduce therefore only allowing the cells to die off. I learned that only 200 cases of my cancer are diagnosed annually, I don’t know if this is national or not, but I would be one of those lucky ones. If it works for me I’m allowing my doctors to take full credit for beating the cancer, I’ll have endured and survived it for them. Sadly, the doctor said my symptoms probably won’t improve unless the tumor shrinks, hence why I’m chomping at the bit to get in ASAP!
In North Carolina we had a delicious lunch at one of my dad’s coworker’s house and his wife is an amazing cook! I also tried shrimp and grits and I highly recommend! On my return from North Carolina I received a letter that I won one of the scholarships I applied for, $5000 baby!
I tried melatonin to help me sleep since I have to stay up on the steroids and boy did I have quite the experience! Apparently I was hanging out with Pocahontas and she got sick so I called her father to keep an eye out for her. I was so relieved when I came to that I did not actually have my phone in my hand when I was leaving the message. Now when I go to bed I make sure to hide my phone so I don’t leave any people weird messages about Pocahontas.
Yesterday I tried the Aquajogger and it felt great to exercise a little since I’m losing muscle tone in my legs again due to lack of mobility. I can’t rock the mini skirt like I used to.
Yesterday was great in the soccer world for us USA fans! Great way to end the holiday weekend! What’s keeping me going now is me imagining my dream of being old, sipping lemonade on my Colorado cabin porch swing with my future fluffy dog Phoenix or tooling around in my baby blue Mini Cooper. I’m trying to maintain the motto of one of my favorite clothing brands, Life is Good, because when I think about it, things could always be worse. I just try to keep the happy thoughts like in Inside Out, I don’t know why I would ever doubt a Disney Pixar production but it was a great flick! Speaking of flicks, now that Longmire is done I have almost finished Broadchurch on Netflix and began Freaks and Geeks to pass the time, although I wish I could be using the time more productively.
I am gonna fight (fight fight) to win” – yourfavoritemartian (Ray William Johnson – YouTube)
I am currently waiting in the airport to depart to North Carolina to meet with a researcher to see if there are any clinical trials I may be able to get into. Being in a wheelchair makes it much easier to pass through airport security. No line waiting! I was recently admitted to CHOP due to worsening symptoms and had a brain MRI and the tumor has in fact started to grow. This morning I received a spine MRI to check for further tumors but we are waiting for the doctor to call us to discuss results.
The good news about being in the hospital is I got the chance to finish season 3 of Longmire on Netflix. I cried at the end because (SPOILER) one of the main characters was set free of a life sentence and on his drive home he hung his head out the window with a grand smile and I just want to have a worry-free smile again.
I have determined that my spiritual animal is a phoenix because I rose strong during my initial recovery and feel like I am withering now but feel that it is only right that in time I shall rise again. It is very encouraging to hear my doctor tell me she is impressed by my physical and mental strength and endurance during this ordeal and she admires my determination. Many people have reached out to me saying that I have inspired and motivated them and shared their war stories with me and then say it is nothing like what I am facing but I don’t believe that you should belittle the struggles you have overcome. It is impressive to hear other people’s stories and just because we face different obstacles doesn’t make you less accomplished in battling and defeating the issue that plagued you physically or emotionally. I am just hoping for the best and ready to get into a trial but am still praying that one day my cancer will just fall out of me. I am ready to move forward to the next step. I am donning the eye patch again, which feels like a setback to me, but it makes me more comfortable walking around with my new brace and cane.
I wish my trip to North Carolina was more of a vacation like my sister is enjoying now but I would say this reason is equally important.
I’m hoping I can catch most of the USA game before the flight, it is going to be a great game!
Standing still is hard” – Regina Spektor (Orange is the New Black)
As you may know I have fallen on hard times in the last couple weeks. The doctor is worried, as an increase in my steroids has not improved my symptoms so I am currently admitted and waiting for an MRI. They did a CT but nothing too emergent but it is just hard to wait for the MRI especially with the results it may hold. The doctor is nervous about possible growth which we figured could come at any time but my recent progress has made it hard to believe things could change so quickly. They flooded my IV with steroids and that gave some relief to my vision problems but I am so exhausted.
The last two or three days yielded almost no sleep and plenty of crying, which is understandable as I am terrified and the wait is making it worse.
We are planning to travel to Duke University this week to meet with a doctor for clinical trials, as that may be the next step. Hopefully the issues I’m having are just one of those fluke cancer setbacks and that I will be back to PT and OT soon. The doctor is nervous about me going back to Quinnipiac in the fall but depending on how I am feeling she is okay with online classes again. In the grand scheme of things I am not too worried about delaying school and have been considering a transfer to focus more in social work but don’t get me wrong I love Quinnipiac and my friends but once all is said and done somewhere else will get me where I want.
I know people tell me they enjoy reading about my journey and experience and that I have been able to inspire but I wanted to reach back and make everyone aware that I enjoy going back and reading everyone’s comments on Facebook and the blog and responding to messages and emails because everyone’s support is also helping me to keep trucking, especially the times I do feel down although I try to focus on being happy. Happier people tend to be healthier and healthier people tend to be happier, that’s my belief. The “crazy” happy people may be onto something and I may join them.
“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 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.
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.
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!
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!