Wanted: Extended Life, with a Side of Laughter

I started my blog in 2008 with great trepidation.  Doing research on the pit falls of writing online, I came across a very funny essay entitled “How to Dissuade Yourself from Writing a Blog”.  It pretty much assured you that what you would write would be utter drek that no one would ever read.  Or, if through some miracle they actually found your blog, they would laugh themselves sick at your ineptitude.  Naturally, I believed I would be an exception to these rules.  So I took the plunge.

At first I was focused on losing weight for my son’s upcoming wedding.  So I wrote about swimming at the local health club and what I ate for breakfast.  Riveting stuff, right?  The words were stilted and formal, dull as dishwater.  Painful to read now, especially since because of immobility and medications I have gained about another zillion pounds.  Then I fell and broke my shoulder.  It was the kind of injury that simply consumes you.  So that is what I started writing about.  The craziness of the fall, the insanity of trying to obtain the care I needed, it all just poured out.  And it poured out in my own way, almost a sort of stream of consciousness.  My readership jumped by over 100.  A friend once gave me the most incredible, touching compliment.  We hadn’t seen each other in ages.  After chatting for the first time in over a year, as we said goodbye I said to her “It has been so good to hear your voice!”  She replied “I hear yours every time I read your blog.”   I could not have asked for higher praise and affirmation.

I began to think in Blogese.  Everything was potential fodder for my posts.   I was lucky enough to be able to attend two separate blogging conferences, great opportunities to network and keep up enthusiasm.  Always on the lookout for potential content, I composed posts in my head all the time.   My motto was one that I had seen on a novelty t-shirt:  “I am SO bogging this!”  Although it was never, ever my intention to exact revenge on people who had treated me poorly.  Well, except perhaps when I was laid off by those incompetent nitwits (long story, read about it here ).   Writing about negative experiences in my own life could possibly be perceived as resentful and/or vengeful, but, again, it was not my plan to deliberately hurt anyone.  The stories of our lives reflect ups but also downs.  Unfortunately, writing about painful incidences can have the appearance of good guy (me) vs. bad guy (them).  I have tried very hard to take ownership for my actions and life choices, to acknowledge when I have been an ass or totally wrong.  I have also tried to be fair to those who have hurt me, working very hard to present a balanced picture, as no one is purely good or bad.  And I have worked hard at understanding and presenting what I have perceived as their motivation. However, for the most part I tried to put a lighthearted spin on my incredibly eventful life, as there are few things I enjoy more than making people laugh.   And while I love to laugh, I didn’t realize quite the impact I had made in that department.

My darling friend Christine recently hosted a small, informal get together to honor my 60^th birthday.  She put a journal on the table and asked people to write comments in it, either a note on how we had met or a fond memory.  As I read through this treasure afterwards, one thing jumped out at me.  Nearly every single person stated one thing they loved about me was how I made them laugh.   I was amazed and touched.   And saddened.  Because I simply don’t feel very funny anymore. Having been virtually housebound and isolated for the past two years, I find it harder and harder to hold a lucid conversation, never mind be funny.  It was hard to laugh at MS.  It is even harder to laugh at metastatic cancer.   Being aware that MS had the very real potential of significantly shortening my life was painful enough.  But having cancer that cannot be cured is devastating. 

I was stunned to note I have written fewer than ten posts this year, opposed to an average of over 50 a year in the past.   But writing is what I am meant to do, a need rather than a want.  Despite some recent criticism by people I love, I have to keep on writing.  Not only is it good for me as an expression of what I am, I get feedback from people, publicly and privately, who tell me how much my words mean to them.  I have to believe that is one of the reasons I am here, one of the ways I can make a difference.   

I am trying hard to live my remaining life to the fullest.  I pray constantly for dignity, courage and, if possible, duration.  I pray for discernment of what meaning my life was intended to take.  I have finally obtained my new power wheelchair.  Now I have to figure out how to get out more.  I want to volunteer where I can.  I want to create a charitable foundation to provide opportunities for people who have encountered crises, to help them over humps the way so many have helped me.   I want to give back, to have a positive impact on this world.  And I want, no, I need, laughter to be part of my life again.

 









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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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