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 :)

My Back, My Neck! (Repost from Saturday, August 1, 2015)

Have you ever tried folding a piece of paper, a gum wrapper, a dollar bill as small as you can?  When I was a kid, I used to do that.  I would just keep folding and folding until it got too small to fold anymore.

THAT is what my body feels like every morning.  There have even been mornings where I can't even move and my husband has to drop Tylenol into my mouth and pour water in so I can swallow them.  I just lie there until it kicks in and then I can get up.  Even with OTC pain killers move around like an old lady.  The nurse at my Oncologist's office asked me what hurt. "Everything," I said.  They asked me to be for specific (heavy sigh).

I mean what else does EVERYTHING mean?!!!  And you know the answer I got?  That this doesn't sound like it has anything to do with the cancer and that I should follow up with my primary care physician.....

SRSLY?!?!

Decisions, Decisions.....

So, the rash is back.  I don't know if it is THE  rash of 2015 but it is A rash and it's looking ugly.  The Rash of 2015 was positively legendary.  It covered every part of my body, front and back, top to bottom.  My doctors still talk about it.  I had that rash for almost 6 months!  My face blew up so big that my eyes were swollen shut.  It was a bad time and there was nothing anyone could do to stop it.

A few days ago I noticed the rash on my stomach returning. Then I noticed a little bit of it on my legs.  There's also a little bit of it on my forearms and hands.  And my husband alerted me to rash behind my ears and under my chin which which has been inching its way up to my face...just a bit.

And then there are my hands.  They hurt.  And my hips.  Oh and my neck and clavicles.  Not at all like the crippling joint and muscle pain I had previously.  That was The Inflammation of 2015.  LOL!

This week is chemo week so my doctors see me every day.  They see my rash progressing.  They see that I'm in a little pain from inflammation. I had a slight fever and felt so ill this morning that I was late to chemo.  Naturally they are concerned.  My transplant is scheduled for the 2nd week in September which is a long way off.  I planned it that way so that I could spend the summer with my kids and be there when my son starts his new middle school.  However, my doctor thinks we should now do it sooner.

"Despite rather aggressive management of your auto-immune issues, we are not really managing them at all.  I have some concerns that between now and September, the next issue you have may not be as benign as an all over body rash or crippling joint pain.  I'm specifically concerned about the vasculitis you had in your neck a month or two ago...what if something like that came back or worse?I'm not trying to scare you but it could complicate your transplant."

Crap.  Not what I wanted to hear.  Part of me thinks he is over-reacting.  The other part of me thinks I am being willfully blind to the dangers of waiting.  To complicate matters, my sisters planned and paid for a "family reunion" in July with all my brothers and sisters and all of their kids.  I am not going to miss that.  So I figured a happy medium would be to have the transplant at the end of July, after our family vacation.

In the meantime, I will just have to pray that the rash doesn't progress too much further, that I will be able to control the itching and inflammation until the end of July, and that nothing worse develops.

Everything You Wanted To Know About A Bone Marrow Biopsy

What's better than a PICC line?  A Bone Marrow Biopsy!  OK, maybe not.  Still, it is a necessary evil that sounds scarier than it really is.  Mostly.

First of all the biopsy can happen at a hospital, clinic or doctor's office and every place has their own way of doing things.  At Hackensack's John Theurer Cancer Center, they only give local anethesia, but you may hear other people say they were given general anethesia.  Local anesthesia allows the patient is awake to answer questions during the biopsy procedure.

Now let's talk about pain because that's really the thing driving the fear, right?  So...does it hurt? Yes. How much is hard to say because everyone's different.  It is no walk in the park but it also isn't excruciatingly painful.  OK maybe that's not helpful.  Personally, I'd rather have a biopsy than a migrane headache.  Perhaps because a biopsy only lasts about 30 minutes and you're not in pain the whole time.

So my doctor has me lay on my stomach and applies a topical anesthetic before giving me the first shot of local anesthesia, and that hurts like hell (to me) but it's quick.  Because I'm on the "thick" side, I also get a shot of anesthesia deeper in the surrounding area of the pelvic bone where the biopsy will be done.  Yes, that hurts too but again it's pretty quick.  My doctor waits a few minutes for it to kick in before doing the biopsy.

At this point I try to focus on talking to my husband.  I try very hard not to think about what is actually happening back there otherwise I'd probably pass out.  I think there is definitely an element of mind over matter that is critical to getting through it.

To me it feels like a lot of tugging and pulling and wrenching that should hurt but doesn't.  It just feels like pressure.  When we're done, the small wound is bandaged and you're free to go.  It can be uncomfortable to sit in the car (or anyplace that will put pressure on the wound) but again, it's nowhere near unbearable.  I never do a biopsy without my husband because it's easier not to have to drive.  After a day or two it mostly becomes a distant memory.

POOR ME!

So I am about to cross over to the other side: my Short Term Disability (STD) turns into Long Term Disability (LTD) on April 7th which reduces my salary to only 60%.

Diving into the unknown, I do nothing but crunch numbers every day.  I consider myself a good thinker so that's what I do.  All day. Long.

"How can I pay my mortgage?"
"How can I pay for my son's insulin?"
"How can I pay for our family's healthcare?"
"How can I pay our car note?"



I've been told I'm a little high strung.  As a Type A personality I am very faithful to the cause; I stress myself out daily.  I find all of those platitudes and all the advice about not sweating the small stuff or taking things day by day are patently ridiculous! Planning ahead is not only important, it is critical for people like us who have cancer and are headed toward poor.

I will give myself credit for reducing the amount of stress I allow into my life since being diagnosed, although you might not see the difference if you didn't know me before.  'You mean you get more stressed than this?!'  Yes.  Yes I do.