The Big 21

 

“Don’t let em say you ain’t beautiful” – Eminem

 

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Last Wednesday marked one year since diagnosis. It was also the big 21. I am probably the first CHOP patient to receive alcohol (as a gift). Family and friends threw me a huge surprise birthday party and Child Life commemorated it with an awesome book. The people at CHOP were in on it.

I would like to thank Jess for the Colorado themed gifts.
I recently finished reradiation. One of the doctors invited me to his Clash of Clans. Of course I still want to try Cannabis Oil. I haven’t been keeping up with the ketogenic diet but I hope to restart it. One day I need to come off the feeding tube! I haven’t eaten In weeks.

 

To keep busy mom and I have almost finished The Alchemyst I sped through Back to the Future and Spider-Man. I’ve been watching the Walking Dead,American Horror Story, Southhampton and Red Bulls.

Having one functioning hand is very hard and I am also having great difficulty talking but there are tools to help.I am using the app I speak. David bought me a one-handed XBOX controller and I also have a wooden card holder.

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Quick shout out to Nurse Alyssa.
Here are some pictures:
Me wearing Chris Corgan Team shirt, the Grey Game that the Belvidere Lady Seaters played and my party.

One Year 

“When my time comesForget the wrong that I’ve done

Help me leave behind some

Reasons to be missed” – Linkin Park
I began reradiation Thursday and started chemo on  Monday. Unfortunately I was unable to post a sooner update since I have been struggling with pneumonia.
Sadly I had to miss the Belvidere girls’ grey game in my honor and for brain cancer awareness. The Hackettstown and Warren Hillls  girls signed my name on their cleats.


  

I was sporting the Chris Corgan jersey after showing some Halloween spirit as Uncle Sam. I still cant eat so celebrating my birthday is going to be tough. I did pick out some awesome games to go with Exploding Kittens.


Mom and I have been reading The Alchemist and I have been watching Spiderman. I am enjoying them a lot.

Hard Times

“”Cause sometimes you just feel tired,Feel weak, and when you feel weak, you feel like you wanna just give up. But you gotta search within you, you gotta find that inner strength.  And just pull that … out of you and get that motivation to not give up. And not be a quitter, no matter how bad you wanna just fall flat on your face and collapse” – Eminem
Lately it seems like nothing is going my way. I wanted to blog earlier but I got sick. Sadly I had to skip church and T’s rugby tournament because I just felt like crap. I wouldn’t say I am the most religious but I am spiritual and it feels good to be there. I want to get better so I can bake for the people there and participate in the activities. I can no longer sing as I am having trouble talking and coughing. I have a build up of phlegm that makes eating and drinking difficult as the constant tickle makes me gag.
Speaking of eating, I am contemplating discontinuing the diet. I haven’t seen improvement but I do like the sense of control it gives me. Depending on my platelet count I will start the next chemo soon but my doctor has suggested reconsidering reradiation. It’s a risky decision as there’s a 15% chance of paralysis due to necrosis. I just want to celebrate my 21 after enjoying Halloween. November 11 marks one year since diagnosis and is my birthday.
In other news I am now a fan of iced coffee and can’t be more like a middle aged woman. Plus, my mom and I have started going to matinees once a week so it’s us and the old people. We saw A Walk in the Woods (if I ever have 6 months to kill I would love to hike the Appalachian Trail), The Intern, and Pan. I have a huge movie list and am currently working on Batman; I loved the X-Men series. Netflix also definitely needs to create another Longmire season to tie up some loose ends.
CHOP is thinking about starting an integrative oncology therapy program that would include aromatherapy, acupuncture, acupressure, chiropractic therapy, yoga, tai-chi, among others. I am very interested in these complimentary treatments. I am also very interested in cannabis oil if the next chemo doesn’t work. I just feel like I am running out of options. With worsening balance, life is getting harder and it feels like it doesn’t want me to win. I try to stay positive but it’s hard at times. I recently read an interesting article ar St. Baldrick’s that is about a new possible treatment.

Shane and Tutka have been coming over for American Horror Story and football and it feels good to not be forgotten. Speaking of which, I have not forgotten about my girls as I tried to see most of them play.

  
  

I learned Texas Hold ‘Em so prepare to lose some money around me. It still has nothing on Yahtzee.
I have been ordering funny cancer shirts and my doctor loved the one that said “my oncologist does my hair.”
Two songs that make me emotional are “Fight Song” by Rachel Platten and “Leave Out All the Rest” by Linkin Park. I love the October weather and just hope to experience it again. I miss Quinnipiac and try to keep up on Q30 TV, The Chronicle, Facebook, Twitter, and just started using Instagram. I really want to be there for my friends’ birthdays. I also recently got a stationary bike to get some more movement and boy is it tiring. Well less than a month until my birthday so here’s hoping to a stronger month.

First Vlog!

Let me know if you prefer the blog or vlog, just thought it’d be cool to switch it up a little,

Vlog:

https://youtu.be/pq2ZGRp-6gc

Dad at his alumni game and me in the lake.

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Jordyn and Lindsay
Jordyn and Lindsay
 Chris and Lindsay
Chris and Lindsay
Dylan, Maria Gracia, Chris, Amber, Cayla
Dylan, Maria Gracia, Chris, Amber, Cayla

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Kael, Hannah, Jeanette
Kael, Hannah, Jeanette
Jess
Jess
Syed and I doing our Shawn Spencer impersonations with Jess,
Syed and I doing our Shawn Spencer impersonations with Jess,
My bumper sticker.
My bumper sticker.
Neal, Chris, Mike, Syed, Liam
Neal, Chris, Mike, Syed, Liam
Me and Syed.
Me and Syed.
Miss Connecticut
Miss Connecticut

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Syed and Chris at Mr. Relay…

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POPCORN!

“All we need is somebody to lean on” – MØ

Eight days until Relay for Life at Quinnipiac. Nathan’s Neuroninjas are back in action. I have written my speech.

These past two weeks I have had visits from Aunt Madeleine, Kristen, Uncle Steve-O and D’Anne. D’Anne made me a cool bag for my wheelchair. I received a nice quilt from the Drifters, spearheaded by D’Anne. Grampa Richard and Aunt Sue Ann also visited this past weekend. Sue Ann added Star Wars in the style of Shakespeare to my reading list.

To keep myself busy lately, Mom and I have been sucked into the Game of Thrones. We are hooked. I have also been trying to catch up on the Walking Dead. We finished reading Go Set A Watchman. I am working on a book on the kindle and also an audiobook. It stinks to be sitting around all day when all you can do is watch Netflix. I like to be busy. Sitting around is only good when done in short intervals. I want to get back to school, working, cooking, playing sports.

Speaking of playing sports I am working on walking again. Physical therapy at home has ended. What will come next has yet to be determined. This past Monday we took the electric wheelchair out for a spin at The Crossings. It felt good to have some freedom. Hannah and Mom are getting quicker at strapping it into the back of the car. Jade still insists on laying down in front of me when I am trying to tool around the house.

After The Crossings we went to Popcorn Buddha. Thank you John Suzuki for making us aware of it. (It kind of looks like you) The popcorn is delicious. I try very hard to eat healthy but it can be difficult with these snacks.

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This past week Hannah had her first scrimmage. I think she dominated! She has my old soccer number. (It must have been the number).

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This week I will be finishing the second round of chemo. We are waiting for results from Foundation Medicine for genetic testing on my biopsy sample. We hope this will give us info on what mutation is driving the tumor. We are waiting for this to figure out the next step. For an example of how this might work look at Time.com/Anselmo online. This is an update to the Cancer Gap article. I am also scheduled for an MRI next week. Duke could still be an option but we will stick with this chemo if it’s working.

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.

Exhaustion: The Good and Bad

“You gotta keep your head up!” Andy Grammer

It is very disheartening to hear that you are incurable but I will keep going. I am almost done with my first of four rounds of chemo. The chemo is really kicking my butt, I am exhausted all the time and now losing my hair. This Sunday I get to take a week off the chemo so hope I regain some energy before going on it again. I got an electric wheelchair and a hospital bed to try to make daily life easier.

Friday the family travelled to RI to the yearly get-together with friends and family at the lake house. It was a lot of fun but I wish I could have done more. I missed paddle boarding and kayaking with everyone. It was fun to float around in a tube in the water once they figured out the best way to wedge me in. I really enjoyed the donut cake from Allie’s Donuts.IMG_2336 IMG_2337  IMG_2330 Also made sure to get Aunt Carrie’s clam cakes and NY system wienies. I used my facial and massage gift certificate that I won at the south county relay for life. It was awesome and I am now a fan of the spa concept and look forward to a pedicure.

It was nice floating around on Sunday with my young cousin Bridget and playing cards with Sloan and Vivian. I really appreciated the attention all the young visitors gave me.

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Even though this chemo is tiring me out because my doctor said “maybe one of these treatments is Nathan’s answer, if this treatment does not do the trick we have a couple others lined up.

My journey with inoperable brain cancer.

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