Just for laughs III

Just for Laughs II

Just For Laughs!

I've been collecting memes and funny quotes about MDS and here are just a few of my faves:

Something New (Repost from July 19, 2015)

So.

Here I am in the strange and unfamiliar position of needing help.  Suddenly I need to advocate for myself, and I'll admit, it is A LOT harder than sticking up for and protecting your children.  Maybe I gain my strength by helping others and if that is the case, then I somehow seem to be made weaker by having to ask for help and protect myself.

This is my NEW story of Advocacy.

The Extinction of Me (Repost from July 22, 2015)

I was looking around my office today thinking to myself that soon nothing will ever be the same as it was. I can hardly believe that there is going to be a time in the near future where I won't even be able to get up, let alone sit up, answer the phone, run downstairs to the cafeteria for a snack.

It's starting already. This will be the first year since my son was diagnosed that I will not be able to participate in fundraising for JDRF.  I will not be a captain of any team doing any good for anyone. I'm crushed.  

And all of this weepy-ness!  For someone who never used to cry, I am now down to measuring the days in tears shed--once I start, I just can't seem to stop.  And I am not being a big girl about this!  Trust me, there is nothing heroic or courageous going on over here, just rising fear and panic and a lot of muscle cramps from treading water.

I am exhausted. The person I used to know; the person I've spent 45 years imperfecting, is slowly disappearing.

The John Theurer Experience (Repost from August 6, 2015)

The waiting room is beautiful. Cool wavy greens and blues; a selection of sofas, comfy arm chairs, and a plasma TV.  Each section is curtained off by a row of delicate silver chains hanging from the ceiling (leukemia section, transplant dept etc.).  On top of each coffee table sits a variation of the same sculpture; silver balls the size of Christmas tree ornaments piled into a mound which, for some reason, remind me of either caviar or foaming at the mouth depending on my mood. 

There's also a little snack bar with bottled water, coffee, juice, cookies, pretzels, chips etc.  Though it is a very nice thing to do,  it's probably more necessary than nice-- after all, they take so much damn blood each time that they something to keep you from passing out!

It all starts when you enter the lobby.  A pleasant young kid meets you at the door with a clip board..."Cynthia Walker?"---How did they know?!  The kid--name tag says Justin--walks me through registration, waits for me at a considerate distance while I cry through all the insurance questions and then takes me to the lab to have my blood work done.  Justin is discreet about handing me tissues as he rings for the elevator and we are whooshed up to the second floor. 

I remember that first day so clearly. I was pissed off (YES,you can still be pissed while crying hysterically,I've always been a multi-tasker).  I didn't want to be "shown the ropes" so to speak, because I didn't plan on coming back because none of this was real and as soon I wake up I'm gonna kick this kid in his ass for upsetting me with this Bullshit!!  Cancer is not for me.  Its not part of my story. I already have all that I can handle and I am the poster child for "WHATEVER DOESN'T KILL YOU MAKES YOU STRONGER," though I've come close.  So, yes, I very much resented everyone trying to show me around the place as if I were coming back!

And the rest is history.  I am now a member of the elite group of the 'bone marrow and platelet challenged' and while that TOTALLY sucks, there is probably not a warmer, cleaner, kinder more organized place to be than the John Theurer Cancer Center in Hackensack, New Jersey!

Cancer at the Martinique Cafe (Repost from July 30, 2015)

There is a place in New York that is so far from humanity that it teeters on the very edge of reality and so massive that it defies comprehension.  But there shrouded in scaffolding is the entrance to: The Herbert Irving Comprehensive Cancer Center at Columbia Presbyterian hospital.

Yesterday I had an appointment with the world renowned  Dr. Azra Raza, Director of the MDS Center at Columbia University.  From New Jersey, the trip is a good hour and a half.  But on a day like yesterday, the hottest day we've had in 2 years, It felt like an virtual odyssey.  As I sat there filling out the 90 page questionnaire in the cool air conditioning, I continued to sweat.  By the time bloodwork started my face was finally losing its redness and and my limp wet underwear was freezing cold.

The appointment went great (although I have really got to stop crying all the damn time!).  Dr. Raza is brilliant, warm, pretty and extremely confident---I like that in a doctor.  It took me a minute to get used to her entourage of medical students and interns but overall it was a very comforting experience and I feel blessed that Dr. Azra is close enough to get to without airfare (though barely)

Just as my bra and underwear were beginning to dry it was time to take the trek back to work.  So armed with a drawing Dr. Raza made of my bone marrow and the cancer within it and a dying cell phone, I headed to the office. An hour later I stepped off of the A-train and back into the broiling, punishing heat.

I felt so drained from crying, exhausted from the heat, and defeated by the gripping cramps in all of my joints that is par for the course when you have MDS.  I just really needed a fucking win!   And just like in the movies, I looked up and there it was, THE MARTINIQUE CAFE.  I hadn't eaten all day and all I'd had was a Gatorade at the doctors office to keep me from passing out.  I crossed the street and went inside fully expecting to be disappointed by shitty food, bad service and weak air conditioning (it can be difficult to think positive thoughts).

Instead, I had one of the best cheeseburgers of my life and the air was so crisp and cool in there!  I had a diet Pepsi with lime while the waitress charged my phone at the front desk.  I sat there for a long time thinking about my life, reminiscing about the buttery brioche bun my burger was on and decided not to go back to work at all that day.  I was so proud of myself :)