Gary my twitter buddy

I'm in shock and speechless..
I get that I'm writing, but I'm truly at a loss. I've just woken up to find a post on facebook from my friend Gary's wife that he passed away this morning. Her and I became facebook friends this past week while Gary was in ICU.

Gary was diagnosed with Peripheral T-cell Lymphoma, lives in florida, with a 2 year old son Mikey and a smart, funny, beautiful supportive wife Samantha.

I met Gary through Twitter. aka Gary my Lymphoma Twitter Buddy.

On May 5th, I got a call from my Surgeon with the full results of my biopsy, and a definition of exactly what type of Lymphoma I have. That evening I went online searching like a bandit for as much information on B Cell/Follicular Lymphoma I could find. From wikipedia and WebMD to lymphomanation. Searching for answers like it was the night before a term paper was due. I wanted an A in Lymphoma 101.

I read and bookmarked tons of medical jargon. Then continued my searches on Facebook and Twitter for support groups and meeting fellow cancer patients. I did a search on Twitter... tons of tweets from patients to organizations came up..but the very first tweet at exactly the same time as I did my search was this:

MrPixar
Doctor: you have lymphoma.
Me: what tha....?
Doctor:yeah :-(
Me: wow life's fair.
9:28 PM May 5th, 2009 from Tweetie

I saw this tweet and knew this was a person I could talk to. I sent a tweet to @MrPixar ..he replied.

 MrPixar

@jenlew hi. Nice to meet u. Sorry under these cicumstances. How are you doing with it? I am still "digesting" 3:49 PM May 6th, 2009 from Tweetie in reply to jenlew

Within days Gary and I were tweeting a couple times a day, keeping it light with our sense of humor a part of almost every conversation.

@jenlew I think my tcells could really kick your bcells' asses. With all due respect of course. Love ya ;) 9:49 PM May 28th, 2009 from Twitterrific in reply to jenlew
  

Then as the shit got deeper we switched to twitter email, then private email, and then it evolved to our savior Instant Messenger.

In real time, back n' forth we had each other to bounce the incessant amounts of information coming at us like a freight train. Every ounce of fear, and positivity muddled in short sentences and quick blasts - furiously cursing and expressing ourselves for hours at a time..all day via instant messenger while at work. Complete strangers, but for that time our biggest support systems.

If one of us had a Dr.'s visit, scan or interaction with someone ...we understood completely. We would say often .."I'm glad you "get" what I'm talking about or .. eh.. this sucks I know at least "you get it".

Gary was told he was starting chemo about a month before I did. We were IM'ing all the time, before his first treatment. I like to think I helped him as the days/hours grew closer. It was just so scary...we read about all the side effects and possible outcomes of treatment. He got through it all like a champ and was there for me when my time came.

When I was told by my first oncologist that Watch n' Wait was a recommended course of 'treatment'... I was confused and frustrated and a total mess. I was very uncomfortable with this guy as my oncologist and Gary thought the guy was an ass.

When I got a 2nd opinion and met my current oncologist and was told I was to start chemo, I was crushed, terrified...and relieved. I texted Gary after leaving the appointment at Sloan. Gary totally 'got it'...and his words were the perfect support.

Gary and I talked a lot about our treatment options.. It was all so confusing..but easier to manage with his support.

Gary was my blog influence .. he had his blog before his diagnosis and bit by bit he blogged more about his cancer experiences. Now it's a full on T-cell Lymphoma chart of his journey.  (here's a post he wrote early on about our friendship and dealing with situations).
I took his cue and began my blog. At first I thought it would be private..but he and I talked a lot about being open and sharing our experiences with everyone. I was impressed by his openness and freedom to talk about whatever was on his mind. We were definitely kindred spirits in that way. I'm not sure I would have had the balls to make my blog visible, rock my bald head or even talk about my Lymphoma on facebook if it weren't for him. Here's an example of his encouraging words.

MrPixar
@jenlew such language! A woman after my own heart. Now get fucking typing goddamnit shit fuck ;) with love.... 9:18 AM May 11th, 2009 from Twitterrific in reply to jenlew
 
Gary's chemo ended up being far more intense than mine, he had a shit storm of debilitating side effects and a constant bombardment of new treatments because of them. Plus, to top it all off..he and his wife flew from Florida to NIH in Maryland every other week for his treatments. His entire life was interrupted.

It was huge to have Gary during that time in the beginning..and I've missed getting to talk to him. Our Instant Messaging conversations ended once the hell of chemo began. For both of us our brains just didn't click into gear like before. I've always been able to chat online, talk on the phone and listen to conversations around me all at the same time. Throughout chemo and sadly still... my multi-tasking is just not what it used to be. Gary had the same issues. Plus, his neuropothy in his hands was starting to really bother him.  As the past few months went by, we tried talking on the phone a few times, but I didn't want to burden him with my stuff.. and I think he felt the same.


We relied mostly on facebook and blog updates with a few text messages now and again...cheering each other on.

A few weeks after his chemo ended and I was in my 5th treatment, we agreed that when my chemo was over we'd talk more. My chemo ended and then he took a turn for the worse and had brutal side effects from his last treatment.


The past few weeks Gary's updates have been filled with high's and low's. The joy of Christmas with his son.. then mentions of complications with his last treatment. Then last week Sam, Gary's wife friend-ed me on facebook. Her updates were alerting everyone that Gary was in ICU and his oygen levels were bad. He needed platelettes and things weren't good. ... I never in a million years would have thought that he would die from all of this (at least not so soon). We planned to battle this fucked up mess of a situation.. for years to come. We talked about him and his family coming to NY staying with me and doing fun stuff on the North Fork and NYC... and me coming to visit them and going to Disney World together.
 
Selfishly, I will never really get to know him and I can't help but wonder how this is going to effect me and the way I process my own shit storm of treatments ahead. We both thought that once this leg of the journey was over... we'd have plenty of time to chat again and share our war stories. I wish I had him to talk to..

MrPixar

we'll just have to stick together I guess. Yes, this sucks big swamp ass but what can we do at this point? Either fight it, or don't and die
7:09 PM May 18th, 2009

Gary was a fighter. He made tough decisions when it came to his treatment, always believing that he had to live and would endure whatever they poked, prodded or chemically juiced him up with. When his spirits were low he tried with all his might to be positive..and when he couldn't be positive for himself, he'd say "i'm here for you kid" ..."whenever you want to talk". Transferring his strength to me.


I have no idea how to end this post... I don't want to stop thinking of him and I feel like when I stop typing I will forget .... although I am reassured to know that I will always have his blog, facebook and twitter pages to refer to. This odd and wonderful new technology that brought us together gives us a bevvy of conversations to re-read again and again. We never met in person.. but he was great friend.


Gary Zullo
2.25.76 - 1.1.10