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Finding Community in Surviving Cancer
This story was produced in partnership with Mashable. Follow them at Mashable HQ.
“Cancer,” Jason Pike wrote in his first blog post last April. “It fucking sucks and it’s hard to explain.”
After realizing that a diagnosis of throat cancer meant surgery would temporarily steal his ability to speak, Pike, a Chicago entrepreneur, turned to blogging as a way to keep friends and family in the loop on his progress.
“As many cancer patients will attest, the act of treatment and recovery is boring as hell,” says the 30-year-old, who blogs at As Yet Unfinished. “There I was, lying in hospital rooms on intense painkillers, sitting in waiting rooms awaiting my daily radiation treatments or lying on my couch watching the same episodes of the same shows over and over. Add to that the sum total of being in pain, scared of dying and unable to speak, and my nature as an expressive artist, and it was shockingly easy for me to keep [the blog] updated.”

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storyboard:

Finding Community in Surviving Cancer

This story was produced in partnership with Mashable. Follow them at Mashable HQ.

“Cancer,” Jason Pike wrote in his first blog post last April. “It fucking sucks and it’s hard to explain.”

After realizing that a diagnosis of throat cancer meant surgery would temporarily steal his ability to speak, Pike, a Chicago entrepreneur, turned to blogging as a way to keep friends and family in the loop on his progress.

“As many cancer patients will attest, the act of treatment and recovery is boring as hell,” says the 30-year-old, who blogs at As Yet Unfinished. “There I was, lying in hospital rooms on intense painkillers, sitting in waiting rooms awaiting my daily radiation treatments or lying on my couch watching the same episodes of the same shows over and over. Add to that the sum total of being in pain, scared of dying and unable to speak, and my nature as an expressive artist, and it was shockingly easy for me to keep [the blog] updated.”

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(via hoechemo)


Things to Do While Radioactive:

laughter-and-other-medicine:

1. play with glow sticks. Freak out family

2. check daily for superpowers

3. draw eyes on my neck and make a smiley face

4. get bitten by a mosquito, see if it dies

5. draw biohazard signs

6. wear as much neon as possible

7. build a fort (ok, so this has NOTHING to do with being radioactive, but lets face it, forts are fun)

8. come up with radiation/cancer jokes

9. dream about glowing people

I did all of these during RADS. After my first treatment I bought some glow sticks. I stuck one down my shirt, put on a dark hoodie and took a nap on the couch waiting for Andy. When he walked in I told him my chest felt a little funny after treatment and I wanted him to see if it looked different….


(Also, what not to do: never tell the radiation technician that you work for a certain technology company, like let’s say Apple. You will be asked to troubleshoot iPhone questions while still topless and lying on on the radiation table. It will be awkward. And, yes, that is from personal experience.)

(via pullingthecancercard)


Amazing Chase! With ACS

I’m doing the Amazing Chase with Team Determination (American Cancer Society)! Come out to cheer us on at the finish line! Van Diemen’s Bar at 5:30! Drink and appetizer specials! Mention team ‘You Gotta Have Hart’!!!!




Happy Canciversary to Me!

One year ago today I was diagnosed with stage IV Hodgkin’s Lymphoma.  This morning, over a celebratory brunch, Andy and I were recalling the details of that day.  

I remember it was a beautiful day and I got a message that morning from Carrie to meet at noon.  So I texted Andy, told him the time, and called my mom.  I remember she wished me luck as I hopped on the subway to meet the doctor.  

Andy and I met at Union Square Park 15 minutes before we went in to the clinic.  We had a moment hugging in the sunshine and promised each other we would somehow handle whatever news we were about to get. 

Carrie brought us into an open room and Andy and I sat.  She was very calm and gentle as she told us the preliminary results were hodgkin’s lymphoma.  It took a few minutes before it sunk in and Carrie paused as I numbly allowed myself to digest the information.  Carrie went on to tell us the survival rates, the treatment options, and her recommendations for our oncologist.  As we left the office she hugged us and told us to call if we had questions.  We left and went back out into the beautiful spring day.  The appointment only took about 30 minutes, but it felt like we had been in there for hours.  

I remember hugging Andy on the sidewalk outside the clinic.  It was then that the tears really began.  But it was surprising that they were tears of relief.  We sat in the park and called our parents and siblings.  I remember as we left the office thinking that calling my mom and dad and sister was going to be the hardest thing I would ever do.  My mom is a cancer survivor and I didn’t want her or my family to feel anymore pain from this disease from my going through it.  But, my family was amazing as usual.  They calmed me down, said they loved me, and volunteered to come to NY to help us out.  

Then, of course, there is that awkward moment of trying to figure out what to do after you get some of the worst news of your life.  I think we decided to have lunch at a diner and get Pink Berry - after, of course, buying more kleenex.  Throughout lunch we held hands, cried and promised that we would get through it together.  As we left the diner, I ran into a professor from grad school.  We hugged and caught up, but I didn’t tell him about the diagnosis.  How do you bring up that you just, literally 1 hour ago, got diagnosed with cancer?  He was having coffee in between classes and I guess didn’t think I should bother him with my cancer.  Even though I knew that this incredible man would feel nothing but compassion and care because he is just that kind guy.  But instead, I smiled and said I was ok, when he asked.  We walked back to Union Square with our FroYo and found a bench in the sun.  We sat in the silence eating our ice cream as the weather grew cooler.  An hour later we hopped on the subway to go home to Brooklyn.  On the walk to our apartment I decided that I would write a basic mass email to our friends and family.  I didn’t want to feel alone in this and I’m an introvert who can sometimes have a hard time asking for help.  I figured I would put it out there.  I didn’t want to hide from  it.  I actually found that I wanted to share it.  I wanted people to know.  And a mass mailing allowed me to let people know all at once without getting overwhelmed with personal phone calls.

It’s funny reading the letter I wrote to my friends.  I called Hodgkin’s the “good” cancer as I tried not to overly alarm my friends.  I now know that there is no good cancer, there is just cancer.  Percentages mean nothing when you are talking about your life.  

Things moved quickly after that.  The days that followed were packed with doctor appointments and tests.  A PET scan to find out exactly what stage the cancer was in, a barrage of tests to assure my body would handle the chemo, more biopsies for the clinical study I wanted to take part in, and a surgery to place a port catheter for chemo in my chest.   We began to quickly realize that our vacation wasn’t going to happen.  I didn’t quite feel that I could enjoy the beaches of Mexico knowing that I had a tumor which was slowly cutting off my airway.  That, combined with the coughing, itching and night sweats, was enough for us to finally admit that we needed to cancel.  Luckily, for the first time, we had bought travel insurance and (almost a year later) we were able to get every penny back.  

Before that day I had tried to imagined what getting a diagnosis like this would be like.  I thought I would be emotionally crushed, or I would be angry with the world and determined to fight, or maybe I would just want to hibernate from the world.  But I found instead that I just felt ready.  My friends started responding to my mass email with sympathy and encouragement.  They told me to fight.  They called me strong and brave.  But I didn’t feel strong or brave.  I just felt ready.  

I don’t think there’s a conscious decision to be a ‘fighter’ when you have cancer, at least there wasn’t for me. I had been sick for 4 months and I was just plain tired of being sick.  I think I quickly accepted cancer because it meant I had a starting point.  A diagnosis meant a course of treatment, which meant getting better.  Cancer was not what we wanted, but it was a beginning.  I was hopeful, I was probably in denial, but I was hopeful.  For me the diagnosis was kind of like rock bottom, and the only place to go was up.  

It was by no means an easy journey from that point to remission.  It was a shitty uphill slog.   But one year later I am still here, and while I’d never choose to go through this year again, I am thankful that I am finally able to put it behind me.  

Thank you to my amazing family, my incredible fiancé, my wonderful roommate, and my fantastic friends for sticking with me through this past year.  Now someone, please buy me a drink!  I deserve it! 

Happy Canciversary to me!



awnerd:


Congratulations!


Its my BIOPSY-VERSARY!

awnerd:

Congratulations!

Its my BIOPSY-VERSARY!


Countdown to my Canciversary (4)

So today marks a year since my bronchoscopy.  It was a horrible experience. We met with the surgeon on Monday and we scheduled the bronchoscopy for 2 days later because Andy and I were planning to leave for Mexico in a few short days to celebrate my birthday.  I wanted to rule out this cancer nonsense as soon as possible so we could focus on what was actually wrong with me and I could go off to Mexico and celebrate.  Rushing to schedule this bronchoscopy we took the first available slot for surgery which was noon on Wednesday.  Anyone who has had any surgery before knows that this is a cardinal sin and you should always aim to have your surgeries in the morning because if you wait till later in the day you end up starving because you can’t eat or drink after midnight and they inevitably run about 3 hours late so you end up cranky, hungry, and miserable.  Which is exactly what happened to me.  We arrived at 11:30am, and I left Andy sitting in the waiting room as I went to change, get my vitals and wait in the patients waiting room.  Finally, at around 3:30pm I was brought into the operating room.  I laid down on the table as Carrie, Dr. Sung’s nurse, described what was going to happen.  Basically, they were going to knock me out as they put a tube down my throat and biopsied the lymph nodes in my lungs.  The entire procedure would take about an hour but before we began, I told Carrie that Andy had been waiting for the last 4 hours and that I would appreciate if she could talk to him after they had finished and as I woke up in recovery. It was understood that I wasn’t interested in keeping information from my fiancé.  She promised she would talk to Andy, and then asked how I would like to get the results: by phone or in person.  I couldn’t imagine being told a cancer diagnosis over the phone, so I opted for in person.  Hopefully she could rush the results for Friday so we didn’t have to wait over the weekend.  

Dr. Sung came in the room, said hi, introduced me to the other doctors and began prepping for surgery and I finally took a look around the room which was plastered with posters about cancer.  As I drifted off to sleep, deeply breathing in the fumes and counting backwards from 100 the hugeness of the moment finally hit me.  We had tossed around the word ‘cancer’ a few times, but this is what today was all about.  I was going to find out if I had cancer and I was scared.  I was terrified.  I cried.  And the next I think I recall was waking up in the recovery room.  

I was woozy, thirsty, and desperately trying to focus.  Somehow, I had ended up with some papers from my Dr. Sung, but I really have no recollection of talking to him.  My uvula felt like it was taking up my entire throat and the recovery nurse kept yelling at me to stop trying to put my fingers in my mouth to pull it out.   I remember pleading with her for some water and she begrudgingly gave me 3 sips of apple juice - the first thing I had taken in all day.  After another 45 minutes of recovery I was allowed to dress and meet Andy.  

We left and I immediately went to the corner store and bought a huge bottle of water which I downed in about a minute and decided that I had earned Pink Berry.  We ate our dessert (difficult for me since my uvula was severely swollen from the surgery) and tried to enjoy the beautiful spring day and tried not to think about what would come in the next few days.  We had a beautiful vacation planned.  It was almost my 30th birthday.  And hopefully we were one step closer to finding out what was wrong with me.  

What I didn’t know was that Carrie and Dr. Sung had indeed gone out to the waiting room to speak with Andy.  They had said that from their experiences it looked like Lymphoma.  (Apparently they had also talked to me in recovery, but I was too drugged out to remember any of it.)  And so Andy had been given a very basic initial diagnosis before me and was in the awkward position of whether or not to tell me I had cancer before the actual diagnosis was made.  In the end, he did not tell me and carried the burden alone.  I was enjoying my FroYo and he was left knowing that I probably had cancer.  While I tried to relax and enjoy the present he did research on the various forms of lymphoma trying to prepare for the road ahead.  And we both waited for Friday when hopefully we would have a final solid answer.


No steroids required. My cough is a wait and see thing since I have my 6 month PET/CT coming up next month and although pneumonitis (very rare) isn’t fully off the table, symptoms wouldn’t be showing up quite so soon. Dr. Parikh had to also remind me that the cough I have now is very different from the one plaguing me last year at this time, which was accompanied by weight loss, fevers, night sweats, exhaustion, etc. Any cough is going to be like PTSD to me, but its actually very different when I think back. Plus, I have since developed a runny nose and so we are hoping its all related and this is just one of those weird and badly timed spring cold/allergy/ sinus things. I am to keep an eye on it and call immediately if it gets worse. But if the doctor isn’t freaking out, I am not freaking out. At least that’s what I keep telling myself.

On the plus side, my RAD burns have healed and faded to a nice awkward tan and I can swallow with ease. And come June we’re going to start testing my thyroid for any damage that impairs whatever it is thyroids do.