The weak

I learned today how truly weak I really am.  My MDS has advanced slightly and I am now scheduled for a transplant (God willing) later this year.  I was diagnosed in June 2015 and since then it has been nothing but one big cluster fuc*.  It's been one of those "whatever can go wrong, will" kinda deals and my husband has been there through all of it.

I'm one of those people who never cries.  I just don't like crying--and I don't like people who cry either.  Yet I have cried more in the last 7 months than I have in the past 45 years!  My husband has comforted me every time we got another piece of bad news or when I've simply erupted in a hail of lava tears that I just could not seem to stop.  There were times I've cried non-stop for 2 hours!  And I'm never ready for it, you know?  It just . . .happens.  And my strong husband is still right there, holding me, wiping my tears away.

My husband is a strong and gentle man.  Since I've known my husband he has lost his grandmother, both of his parents, his cousin (who may as well have been his brother since they grew up in the same household) and numerous aunts and uncles.  Yet, he never really cried about any of it--at least not that I know of.

Today we had to put our cat, Charlie, to sleep.  Me and my younger son were pretty much out of control crying.  Our 18 year old shed a modest tear or two and my husband held us all together...as usual.  Yet when we got in the car with our empty cat carrier, minus another member of our family, I saw the tears dropping as my husband continued driving and staring straight ahead.

My heart stumbled in my chest and my whole body hurt.  And my soul hurt too.  All I could think of was how to stop it.  Can I buy him something or give him something or somehow turn this shit off please?!!  That's when I realized my weakness.  I don't think I could ever hold him together the way he does with me.  Seeing my husband cry puts me in a panic; undoes me completely.  I am just not equipped to handle the feeling that come crashing down on me when I see my husband cry so I focus solely on how to make it stop.  I came up with all of us going to Coldstone.  Eating has always been my vice so it was a natural default for me.  And who can cry while eating ice cream?

So today my utter weakness became apparent, but what really mystifies me is how has my husband been able to endure so much loss and sadness and all of my tears without breaking?  God must had mapped out a plan in advance.  If someone had to get cancer in our family, who should it be?  The younger one already has Type1 diabetes so that would be sucky.  What about our 18-year old?  Well he already has multiple challenges and would not be able to manage it.  So it's down to me and my husband.  God knew I was the weak one (despite the fact that I've always worn the "strong one" t-shirt) He knew that if the tables were turned and my husband was the one with the cancer, I could never hold our family together.  Because my husband is my weakness.

--and my greatest source of strength.



RIP Charlie Simpson - 2016.

I'm Fine.

It's the week after my first round of Vidaza and I feel like shit.  It's kind of an all over sense of malaise. None of me feels good.  All I do everyday is sit in the den watching the Food Network and alternately freezing my ass off and staving off spontaneous combustion (these can't be hot flashes!). I've had hot flashes or "hot waves" as my younger son used to call them and they were hot but not like this.  Cancer seems to be the spice of life; it seasons everything making everything you've ever experienced so much more intense. . .and NOT in a good way!

I baked a cake yesterday.  15 minutes in I was out of breath and needed to rest my elbows on the counter.  Eventually, I finished the cake and that was the extent of my accomplishment for the day. Today's goal is to try to drink 2 Gatorades and a couple of bottles of water to keep myself hydrated in order to combat this pervasive light-headedness.  SRSLY???  That's the only goal?...um yeah, pretty much.  Look, I know I need to accept the way things are.  Accept, accept, accept!  I'm trying, but I can't.  I am so frustrated that just the idea of having to get up and go upstairs to pee seems almost as exhausting as doing it.  

And yes I cry.  Mostly out of frustration.  All of this constant laying around has turned my sofa into a fucking force field of  crackling static that makes me want to kill myself; not to mention the large cavity that has been carved into the cushions in the shape of my body.  I almost have to lay down because as soon as you sit, you are rolled toward the back of the sofa and into the cavity.

I have laundry to do.  I need to cook.  I want to sit at the dining room table to harass...er, um, I mean help my son with his homework.  I want to go to the mall.  I want to go out to lunch with my husband.  I want my cellphone to stop going off every four hours reminding me to take medication.

But I haven't lost my hair yet and I still wake up every morning.  I'm not transfusion-dependent and I have a wonderfully supportive husband and family so I guess that means...

I'm fine.

The Problem with MDS: Vidaza!

The Problem with MDS: Vidaza!: Vidaza .  VEE-DAH-ZAH!!!! Sounds like a delicious Italian dessert, or an exotic island, or maybe a magical incantation like, Abracadabra ! ...

Vidaza!

Vidaza.  VEE-DAH-ZAH!!!! Sounds like a delicious Italian dessert, or an exotic island, or maybe a magical incantation like, Abracadabra!

Not.

Today is day 4 of  my new Vidaza chemotherapy regimen.  It started on Monday and goes for five consecutive days. They say you'll be tired and need to recuperate the week after.  Unlike the Gleevec I took prior to this, Vidaza is given intravenously.  It can also be given by 2 or 3 injections at a time but since their tends to be irritation/rash at the injection site my doctor said intravenous was the way to go (I am still struggling with the "legendary rash of 2015).

As I waited for the elevator in the lobby, I felt light headed, dizzy and slightly nauseated.  All at once I had a bunch of thoughts: I am so tired of feeling sick; I hope I can have a transplant in the next 6-8 months; and I hope it works; and I miss my cousin Jason.  Jason recently died from very aggressive forms of cancer and he suffered just about every moment until it was over.  I'm glad he no longer has to deal with the pain and indignities of being in the throes of stage 4 cancer, but I selfishly miss having some one to talk to (someone who has..had cancer too).  Anyway all those thought stacked up like a sandwich and I burst into tears.  I hate when I do that.  It gets harder and harder to stop once I get started.

Fast forward 40 minutes to the 3rd floor

I'm in an isolation room because I still test positive for C-diff, though I no longer have symptoms thank God!  A pretty Filipino nurse comes in to hunt for a working vein.  I trust Filipinos.  I'm not sure why.  They just seem so...competent.  Anyway, after she inserts the needle and flushes the line, I get IV fluids and Zofran first.  I live on Zofran and Compazine these days because I am just about always nauseous.  After 30 minutes or so, my meds arrive and I get the awesome, extra special VEE-DAH-ZAH!!!!!

 Poof!

Spontaneous Combustion!

Oh for the love of GOD!  Sitting in the barbershop waiting for my son, talking to my son's psychologist, getting out of the car....why the fuck does my nose just spontaneously combust?!??! I'm getting better at being prepared.  I mean I don't leave the house without Afrin spray (which narrows the blood vessels in the nose slowing and sometimes stopping the bleeding) but even still.

What a bummer.

Reality and Recovery

My cousin is gone.  I still have cancer.

Trying to figure out where to go from here.  Being on disability has not afforded me the luxuries of baking cookies for my kids or helping them get off to school in the mornings.  Most of my time is spent napping, enduring one indignity or another (the latest is colitis..woo hoo!), trying to get my disability payments on track (even if you are missing all four limbs, you have to prove this every month!) and then there's the medical bills.

We got the bills I owe and can pay.
We got the bills I owe and cannot pay.
We got the setting up of payment plans for the bills I cannot pay.
And then we got the bills that were denied by the insurance company due to a "coding" problem.

I really wish that my reality was that I was steadily recovering and had time to do all the things my mind and body want to do...

....fucking MDS!

RAEB-1 Plans

Found out the chemo I was on (Gleevec) for 2 months, did not work to lower my blast cells (in fact they are ever so slightly higher ), nor did it fix any of the genetic abnormalities.  Next step, Vidaza, which is a more stringent chemo than the Gleevec we tried.  The plan is to see if this works to lower my blasts.  It works slowly so we wont know if works until I've been on it for 3-6 months.  Biopsy in 6 months to confirm.

Either way a transplant for me is inevitable and better sooner than later due to the transplant risks involved which increase the older you get.  My MDS is categorized as RAEB-1 which is intermediate to high risk.

Onward and upward!