The Fight Begins

All treatment that I’ve received over the past eight years for MS was designed to slow the progression of disability.  Some of the meds didn’t work, some I declined because of potential side effects.  Tysabri worked for a while.  But as my condition worsened, I decided to go off of it.  It had been four years.  There were no studies available about being on the drug for that length of time.  I figured, why stay on something potentially dangerous that wasn’t helping anymore anyway?  As powerful and as serious as they were, all of these medications were really designed primarily to address quality of life issues.  Not that quality of life is not important, certainly.  It is meaningful and has enormous value and power.  But I would still survive.

Boy how the game has changed.  All the treatment I am receiving now is designed to literally save my life.  This is a tough concept to wrap my brain around.

I started radiation treatments last week.  I go every weekday and will for a total of approximately 35 sessions, or six weeks.  The initial set up took a long time while they measured and tattooed and drew little dots.  But now the sessions take less than ten minutes each.  It literally takes as long to get on the table as it does to receive the treatment.  I have to undress to the waist, get on a gown, get out of my wheelchair, pivot around to the table, sit my bum down in a designated spot, get both feet onto a step stool to push back more onto the table, then one tech supports my back and shoulders while the other swings up first one leg, then the next, as I cannot raise them myself.  Then I need a minute or so to catch my breath before they get started.  One day we were so intent on getting me set up, we completely forgot about getting my shirt off!  And I have to tell you, I have been single for a long time.  I have not had a parade of Romeo’s through my bedroom.  Therefore I had little concept of how shabby my underwear was until I had multiple people beholding it.  For that matter, I had little concept of how shabby my boobs were, either, until I had an audience.  Despite respectful staff, dignity, decorum and self-deception fly right out the window when you have breast cancer.

After approximately 7 minutes, we have to do the whole thing again, in reverse.

It sounds so simple, but it really is exhausting.  Shoot, these days everything is exhausting.  

I am a firm believer in the power of the mind over matter.  Because you do not feel or see anything with the radiation, it is hard to remember this is a process designed to eradicate the cancer, that these invisible beams are, hopefully, destroying the malignant cells.  The first few sessions I was just numb with the horror of what I was undergoing.  Then at the beginning of one session I started thinking “Kill!  Kill!  Kill!”.  That actually made me giggle.  It made me think of Arlo Guthrie in “Alice’s Restaurant”.


    


Funny, but not a good fit.

So now I am trying to imagine beams of healing lights seeking out the cancer and making it disappear.  That is definitely more comforting.

I started the hormone treatment last week, too.  I am mortified to acknowledge that at 59 I am still not in menopause.  Yep, you read that right, 59 and fertile.  Talk about horror.  Although that may account for my youthful beauty.   lol  So I have started injections that are supposed to rapidly bring on menopause: hot flashes, mood swings, the whole shebang.

Tick, tick, tick…still waiting.

So there we have it, the battle for my life has started.  Before I was fighting to stay mobile.  In retrospect, that seems almost frivolous.  Now I am fighting for more time.  I must believe I will win, although it is a struggle to stay positive, as I am so scared.   I am ashamed to admit I am scared of suffering, of indignity, of missing out on so many wonderful things.   I am having a hard time praying, so I am incredibly grateful for any prayers you might offer on my behalf.  I especially want to pray for renewed faith, for strength and courage.  At the radiation center and the oncologist’s office, I am surrounded by brave, serene people.  They are my role models.   Wish us luck!

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A few more things...

Purse

I loved my wedding purse! It is my Stevie Nicks bag.

Everything I choose my fashion arbiter Christine rejects as "too Stevie Nicks".

Hey, I LIKE Stevie Nicks. I can't help it if I am an aging hippie. And I have good, classic rock'n'roll taste.

Christine is ten years younger than me. You didn't see me out on the dance floor waving my arms around like a fool to Bon Jovi!

I do try to forget hearing a rock critic refer to Stevie Nicks as "the Norma Desmond of rock'n'roll". Ouch.

Fight!

When I got the hotel to meet the boys before the wedding, the four handicapped spots in front were already taken. I was strung out and stressed out, still had to put my make-up on and hadn’t been able to zip my dress all the way up in the back because of my broken shoulder. Not a happy camper.

I drove around fruitlessly trying to find a spot I would be able to walk from. There were NONE. I was close to tears because I was also late.

So I parked in the front, figuring I would get one of the boys to move the car for me.

When I went in, I said to the clerk, “I can’t believe you only have four handicapped spots for this entire hotel!” And she got SNOTTY with me!!!! Can you believe it?!?! Alright, so I looked like a mad woman, frazzled, no makeup, my dress drooping down in the front to reveal my underwear. But she was mean. To a handicapped person! So my only apparent handicap at that time was that I appeared to be insane. But still.

She said, "Ma'am, we have plenty of handicapped spaces."

I replied, with total maturity and self restraint, “Well thank you SO MUCH for your sympathy and helpfulness. It is so gratifying to see such a demonstration of really outstanding customer service.” And I said it sort of loud.

So she said, with super-sized snottiness, “Ma’am, we have at least four handicapped spots at each entrance.”

So I said, “Oh, like the other entrances that are a football field length away?!?! Well that IS helpful.”

What I really wanted to do at this point was start jumping around yelling “ATTICA! ATTICA!!!” or at the very least chain myself to a chair in the lobby. But I realized that while in principle Ryan might support my pursuit of social justice, choosing this particular moment could cause him to be less than pleased.

So rather than make a massive a scene in the hotel lobby, I just had her call his room and up I went.

She may claim that I stuck my tongue at her when we left. But I will deny that to the day I die.

(When Bob went to move my car, there was a spot right in front. Ah, the irony.)

My Birthday

It was yesterday. I was mumble mumble mumble years old. Chronologically. Maturity wise I am approaching 12.

I had actually been awake for about an hour before I remembered it was my birthday. That struck me as a little pathetic.

But Ryan and Claire surprised me at the post-wedding brunch with a cake. I was so touched I forgot to take a picture of the cake before it ended up looking like it had been ravaged by a pack of rabid badgers:

It was delish.

Everyone sang happy birthday and I got this beautiful card from my FIVE children:

I can’t deny the fact that they like me!! Right now, they like me. lol

Happy Birthday to me!!