Monday, October 28, 2013

Just One More Time

On scales large and small, I have had to re-invent myself any number of times throughout my life.

As a four year old, I had to learn to live with a disability after an accident caused me to lose my right eye.  I had to adjust to my realigned peripheral vision, deal with curious, sometimes rude, people who questioned me about my bandages and then my prosthesis.  In general, I had to learn to become a normal-but-different little girl. 

Each age brought new opportunities to try on different personas.  I never found a perfect fit, because I was interested in so many things that I was like a chameleon.  I could wear a different identity a dozen times a day.  Bookworm, writer, poet, hippie, rebel, compliant, outspoken, shy, tomboy, girly girl, daydreamer, protester, studious, overachiever, slacker, sad, carefree.

Reinvention happened over and over.  Wife.  Mother.  Widow with four children.  Career, advancing from front line entry level to executive. Homeowner, giddy with pride.  Graduate school, 4.0.  Living the good life, traveling, enjoying my grown children, grateful for all of this and my many wonderful friends.  So happy! Then MS and everything starting to slip through my fingers.

More reinvention, in reverse. This disease chipped away at all my selves, gradually stealing my career, independence, dignity, security and, unbelievably, my children.  For my oldest son has slammed the door of his life right in my face.  My younger one told me he couldn’t cope with me being sick, so he just avoids me

MS – the gift that keeps on taking.  As years passed, I was gradually adjusting to these new personas.  I could not accept them or embrace them.  I could not say stupid things like “I am so glad I have MS because it forced me to stop and smell the roses.” (People actually say that!) I could smell the roses just fine before, thank you very much.  I desperately wanted my old life back.  But I was finally acknowledging that was never going to happen.  So I needed to deal with it.  I needed to keep, keep, keep reinventing myself, no matter how much I hated it.

I starting writing again, something I had given up on after college.  Love of words was embedded in my DNA.  Besides being a mother, writing my blog is hands down the most fun, rewarding thing I have ever done for myself.  And with writing came new friends and renewed contact with old friends.  I will never fail to be astonished at the amazing, giving, caring people that surround me.  Their endless affirmation has kept me going.

Then came breast cancer.   Of all the f-ing things.  What is with this, God?!?  I don’t get cancer!!  No one in my family gets cancer.  But I managed to hit the crap lottery again.  Time for a whole new reinvention. The Before Disease, MS, was incurable and painful and cruel.  Cancer can be all that and more.   New vocabulary, new doctors, new procedures.  Lumpectomy, radiation, hormone treatment.  I was not a candidate for chemo, as I had too many health complications.  Chemo could kill the cancer but it was more likely to kill me first.  This was a blow.  But, ok, I’ve dealt with blows before and I will do it again.

It Just Keeps Coming

This week brought news that I must reinvent myself for what will probably be the final time.  The cancer has spread. 

Now I know none of us are getting out of here alive.  I had just hoped for a bit longer than 59 years.  I never thought I would have to reinvent myself as a dying person.

I know it is counterproductive, but in these early days I find myself thinking of all the things I will never do.  I will never have a chance to live in England, which had been a lifelong dream.  I never will publish that novel.  I won’t see my adored grandchildren graduate from high school, marry, start their own families. I will never go to another Springsteen concert.  There are so many books I will never read.  I am crushed by all the fascinating places I will never visit, the wonderful people I will never know, the dear and wonderful people I already have in my life and will never see again. 

Now I must acknowledge my prince will never come.  I will never again have a life partner, someone to help me carry the sorrows and relish the joys.  There is too little life left.

So many nevers.

A dear friend was visiting last week.  She has been resoundingly healthy for most of her 70-odd years.  But this past summer she had surgery that, while serious, should have been very straight forward with an uncomplicated recovery.  It did not work out like that and she is still recuperating.  As she was leaving she said something about her ‘new normal’.  Isn’t it funny, I said, that a ‘new normal’ never means anything good?  We laughed.  But it’s true.  New normals are always about loss and forced change.  They are always about having no choice but learning to do things in a new way, without the normal, and usually beloved, thing that is now gone. 

My new normal is currently an excruciating awareness of my mortality.  Every act, every conversation is fraught with portent.  How much longer?  Is this the last time I will do this, see this, talk to them?

It is very strange, this particular new normal, and I am struggling with this particular reinvention.  

But I am nothing if not stubborn.  I will not go quietly or gently into the night.  Even with my limited capacity, I am going to do as much as I can in as much time as I have.  In my mind I am WILLING the radiation to work.  If sheer force of determination can cure me, I will live forever.  I am heading into cancer kicking and screaming with objections, praying fervently for a cure. 

I am not ready to go just yet.  Stand by for further adventures.  Because we all know there are going to be some.


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Wednesday, October 16, 2013

The Tattooed Lady

So.  Today, at the age of 59, I got my very first tattoo.

See if you can guess what it is:


No?  How about this?

Hmmm…what about this charmer?

Ok, I’ll tell you….TA DA:

It’s that little black dot in the middle.  There are three others as well, but I can’t show you those because they include naughty bits.  They are the markers for my radiation treatment, which will probably begin next week.  I have too many co-morbitities to be a candidate for chemo, so we are hoping radiation, along with hormone therapy afterwards, will eradicate any errant cancer cells.  I will have a treatment every day, five days a week, for over six weeks.

In an icy cold MRI room, on a hard plastic table, I was set up for the procedures I will receive.  My arm was held over my head in a brace and I have to keep my head turned as far to the right as possible to avoid irradiating my face.  The area that was measured and marked off is relatively large, to include the lymph nodes in my neck and armpit.   Holding still for over a half an hour, my muscles started to spasm and then I was tattooed so the radiation can be aimed at the exact same spot each time.  Lying there, I had a few tearful moments as I was overwhelmed by the enormity of what was happening.  I still cannot believe I have cancer.   Oh, and we’re still pursuing the whole spot-on-the-liver thing, I have to go for another MRI next week.  I am just so weary of being a sick person.

I have to say, though, everyone at the Radiation Oncology Center was kind, pleasant and helpful.  My doctor is relaxed and friendly, he reminded me of B.D. Wong, except he is Korean, not Chinese.  He was incredibly reassuring and empathetic.

Who knows, maybe when all this is over I will treat myself to a new tattoo.  One of these would be my cup of tea.

My new theme song:


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Saturday, October 5, 2013

From the Deep End

It has been a rough couple of months.  And, as usual, my unhealthy coping mechanism is going to ground.

But writing this blog has been one of the most fun and rewarding things I have ever done and is definitely something I am not giving up on.  I have been jotting down a few ideas for posts and as I feel better I will work them up and get them on line.

I had the surgery to remove the malignant tumor from my breast last week and followed up with my surgeon yesterday.  I cannot say enough good things about her.  The first surgeon I saw had me frantic with fear due to my complicated medical history.  When I met with Dr. C. for a second opinion, her down to earth, direct manner was instantly reassuring.  She was frank about concerns over potential problems, but expressed confidence in managing them.   At the hospital for the surgery, I continued to be just bowled over by her easy going presence.  She was relaxed and cheerful and hands on, no chore was beneath her.  She even helped out pushing my bed to the OR, rather than waiting for the one whose job it was.  You just couldn’t help feeling assured by her all-around niceness.  I actually asked her if she had been a nurse before she was a physician, she was so unassuming, the antithesis of your usual I-Am-God surgeon.   She laughed and ascribed it to her upbringing and OCD.  More reason to love her.  She makes you want to be her best friend.  Or maybe marry her.

Not to be left out, my anesthesiologist was outstanding as well.  His clinical expertise combined with incredible compassion truly helped in easing my considerable fear of the anesthesia, in light of my lung complications.

Anyway, the follow up appointment was a mixed bag.  She got the whole tumor, which turned out to be the size of an egg.  While there were cancer cells in the margins, she believes she got it all out.  That was the good news.  I was surprised and dismayed to learn that after discussing my case at a meeting this week, the team felt chemotherapy could be necessary.  But with all my health problems, I might not be well enough to withstand it.  That was upsetting on both levels.  Then there is the radiation, which is the usual protocol after a lumpectomy.  I was really keeping any thought about the whole process at the back of my mind, it was just too much to take in before the surgery.  But now that it is imminent, the reality of what a trial it will be began to hit home.  Radiation is done five days a week, Monday to Friday, for six and a half weeks.  With my mobility issues, this is going to be tough.  It will be a challenge getting me there, it will be a challenge getting me on the table and it will be a challenge for me to lay on my back for a prolonged period of time.  As with everything else in my life, this will be really complicated.

Then I have the gall bladder issue.  I still have a biliary drain in, a constant source of discomfort and worry about potential infection.  But we dare not attempt the surgery, because God forbid I have complications, it will delay the breast cancer treatment again, as it has been delayed over the past months by all my health crises.


I am working at staying positive.  For one thing, I have a group of incredible, wonderful, loving friends behind me.  I am inundated by cards, phone calls, visits and well-wishing on Facebook. I am humbled by everyone’s faithfulness.   I feel as though I owe it to them to keep upbeat.  If they have confidence in me, who am I to be gloomy?


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