Thursday, November 7, 2013

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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Enjoying the Ride said...

Marie, you are brave woman! Thanks for sharing, and good luck.


Marie said...

Thanks Mitch!

Shorespinner said...

I prayed the Collect for First Advent all through radiation - "Almighty God, give us grace to cast away the works of darkness, and put on the armor of light..." You don't have to be brave, you just have to be THERE. I was relieved to find out that attitude has nothing to do with effectiveness of the treatment. My attitude was very low some days. Just hang on, Marie, and let the radiation do its work. And maybe buy a couple of nice bras online? ;-}

annie said...

My prayers coming your way.

Shorespinner said...

Something else that got me through.
Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot depress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.

Marie said...

Shorespinner: You are managing to leave the perfect message, ones that I NEED to hear, every time. Thank you for your faith and wisdom.

BTW, I cannot believe I forgot to tell you. I have found out R.'s new baby is a little girl, and she shares your beautiful first name. :)

Annie: I am so grateful for your prayers. Please know they are returned and I know you will be blessed for your generosity and caring. :)

Muffie said...

Marie, my prayers continue for you. You amaze me how you can keep up your witty banter in the midst of all you're going through!

brokenteepee said...

You know they have seen every imaginable boob out there so take some comfort in that and they are fighting for you too. In my short stays in the hospital I learned there is no privacy and it was just easier to accept that more people were going to see more parts of me and to just let go of modesty while I was there. I found a happy place and I go there.

Guided imagery as you are doing is very powerful and cannot hurt and has been shown to help tremendously. I use it with my pain all the time. Keep doing it and you will find it comes naturally when you need it.

Goat hugs from here.

Marie said...

Muffie - Thank you for your prayers and for your faithful friendship. xo

Patty - I am at that point where I barely notice when I am naked anymore, never mind that someone else is seeing me. The staff is so unbelievably kind and sensitive that it really is ok.

Thank you for being my friend and for all the goat hugs. I am always so grateful for your comments. xoxo