I haven't blogged in almost a year. I've been living my life... feeling and behaving healthy. This little cancer interruption has been shoved to the back of my mind. Even with bi-monthly treatments at Memorial Sloan Kettering and quarterly CT Scans ... it's all just a task that I must check off like paying taxes or speeding tickets.
Today, I finally felt inspired to blog. I just spent over 2 hours on the phone attempting to confirm a stupid CT Scan appointment. Over 2 hours mostly on hold with 4 people at 4 different locations and departments...just to confirm an appointment my oncologist prescribed for a stupid scan at the same hospital I've been going to for a year.
I pay a fortune for the insurance I have. It's an astounding $600 a month plus co-pays and treatment costs. It's an unbelievable amount of money that I will NEVER pay in full. (That is both a threat and a promise!)
I don't begin to understand health care reform. I truly don't have any clue as to what potential changes to my health care will be affected in regards to my treatment or my financially responsibilities. I also don't know what happens to the system with reform. Will it be easier to manage? What I do know is this. Our current system sucks! Not just the arbitrary legal shoveling of pharmaceuticals down peoples throats, and the over charging insurance mark up big business creating money grubbing slimy bastards. But the inefficiency of the system.
Be it a HMO or a PPO it's all WTF. Either way you spend your time calling and referring and getting authorization codes and case numbers it's a waist of time and money. The astounding inefficiency of such an enormous monopoly is blasphemy. If it were a normal corporation it would have gone under... customers would have complained and stopped using them. This isn't news, I know you already know this, I know I already know this but all the crazy revolution in Egypt just keeps reminding me that we are a bunch of do nothings who sit around waiting for the world to change. I for certain am the pied piper of apathy. But, today I'm fired up.
Changes must be made ... I have no clue as to what they are.. but if you have read this far along ...I appreciate you hearing me out and I now feel better.
What I do know is how we can all help within this labyrinth of ridiculousness. If you have a friend or relative who is sick. Offer to help schedule appointments or organize their bills or medications. Food, cards, gifts and loving words of support are fabulous ..but the time sucking, paper-work needing health care system is enough to make anyone say screw it to the meds and appointments and just give up.
I'm healthy, happy and am graced with the ability to function with an extraordinary amount of denial and procrastination ...so managing this crap isn't too difficult for me. But some patients like to pay their bills on time and like taking the correct dosage of medications at the correct time ..it's those people I feel really bad for right now. I can't imagine being truly sick and having to deal with these complications. So maybe we can't fix the huge problem but we can all lend a hand in fixing our friends and families little problems.
Thanks for hearing me out. I Hope I riled someone I know to go fix the health care problem. Now I feel better and have to go watch the Real Housewives reunion show.
p.s. ...let me just add.. that I have cherished the support and love in all the means friends and family have bestowed on me. I don't think I would be feeling as good as I do if not for the heartfelt cards, food, gifts, thoughts and love. Thank you.
Rituximab Treatment Day 1 of 12 ( Every 8 weeks for 24 months )
It's called Rituxin "maintenance" this treatment. I describe it to people like this:
Chemo to me is the equivalent of getting Tented - the procedure exterminators do when your house has termites. You tent the entire house and blast the shit out of it with heavy duty chemicals until all the termites are dead.
Tenting = Chemo
But, just like with termites, cancer cells don't go away forever.. so then you schedule maintenance. The exterminator comes around and spray's your house every couple of weeks to keep the termites dead. Monthly termite spray = Rituxin Maintenance
They say this maintenance regimen should buy me at least 5-7 years of cancer-less existence without the need for more chemo. Fingers crossed!
My "spraying" yesterday, wasn't so bad at all. It was an 8am appointment to get my blood work and see my Oncologist. I was checked in for chemo by 10a and was in my favorite chemo room, and had my favorite nurse Joy, by 11:30. I slept through most of it.. Joy eased the needle into my port gave me 50mg of Benedryl a Blanket, pillow and within about 25 mins. of watching Weeds Season 3 on my laptop.... I was sound a sleep in my chemo chair.Woke up 2 hours later, with 30mins left of the drip and I was out of Sloan Kettering by 2pm.
Very glad to have the first treatment over with. I had heard it wasn't difficult and that there were minimal (if any) side effects, but didn't believe it until I witnessed it for myself. Rituxin on it's own is a breeze... everyone was right.
Knowing you have a type of cancer, going to Sloan Kettering, waisting a day in a chemo chair, getting blood tests, meeting with a fertility specialist... that stuff mentally challenging. But, the R-maintenance chemo. Not a problem.
The Benedryl then kept me a sleep and high for the remainder of the day. I slept on Ali's couch until 7:15p. Was at We Unite for Haiti/Emma's show by 8p. The show was amazing.
The 5 guys cheeseburger and fries afterwords was almost as amazing.
Hello. It's been a few weeks since my last post...and from what I can tell, I've been missed a little bit...which is lovely. I am humbled by the curiosity and genuine concern.
There really hasn't been much to report, except that I have some hair and I feel pretty good.
So, here we are.. a month or so later with lots of good news, lots of change.. and from what I can gather of my own psyche.. a much needed respite from all things cancer.
R-CHOP Chemo is over, my scans are good. I have been given the choice to either receive Rituxin maintenance every 8 weeks for the next 2 years or try Zevelin which is a radioimmunotherapy that one can only receive once in a lifetime.
I've chosen R-maintenance and my first injection is on March 4th. They say this treatment is easy to manage and not such a great imposition on your life...and certainly every 8 weeks is manageable.
Other than processing that, I have been focused on just living my life. Having fun, pretending that things are normal and watching my hair grow.
<3
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:
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.
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.
My results are good, chemo is definitely working!! YAY!
The results of the scans, were 1 of 3 alternatives: watch & wait, Rituxin, or Zevelin.
I knew that at this stage of the game, I didn't want Zevelin.
Unless my scans proved to be shitty, Zevelin as far as I'm concerned, is my first Hail Mary. It can only be given once, because it screws up your bone marrow. Plus, the side effects are heavy.
I was hoping he'd say that I'd be in watch n' wait ... I'm a sucker for procrastinating and that seemed to be the best protocol.
Alas, I got door number two. I'll have to go on Rituxin maintenance. So every 8 weeks for the next 2 years. I'll have to go to Sloan and still get the one chemo drug. Blech!
It was a nerve wracking week or more waiting for the results. I was supposed to come into the city the night before but just couldn't wrap my mind around having fun and being around people so I stayed home in bed. As usual I took the morning jitney into the city.
Ali is away, so this time Sharon met up with Mom and I at Sloan.
After meeting with the Oncologist we had a delicious dinner at Four Seasons and then I hung out with Sage & Emma at the Blocks. Nothing like a delicious dinner with my mom and sister, then spending time with my nieces to get my mind off reality. I'm lucky to have them around.
Rituximab Maintenance has been standard procedure post R-CHOP chemotherapy for the past few years. Rituxin is the R of the R-CHOP chemo.
They say, two years of maintenance therapy with rituximab dramatically improves the chances of survival for patients suffering from one of the most frequent forms of lymphoma, indolent non-Hodgkin's Lymphoma (NHL).
Certainly not the worst news a cancer patient can hear.. and I've heard Rituxin isn't that difficult to bear and the side effects aren't that bad.
But, it still sucks all the same. The thought of this damn port staying in me another two years, and having to go back to Sloan as a reminder that I do have cancer is just a total pain in the ass.
But again... it's also awesome. The out come of the scans could be far worse.
I'm lucky, happy and feeling pretty good. As soon as my hair grows back I'll look as good as I feel.
a north fork living. matchbox making. social media addicted. reformed city dwelling. x feature film producing. lover of all things creative and witty...and a cancer having, follicular lymphoma battling scardy-cat.
