Fighting Fear

Went for a routine CT scan last Thursday, routine as far as keeping an eye on the liver tumors, which have mercifully been shrinking.

I tried to put it out of my mind.  I believe if you imagine negative outcomes, they can become a self-fulfilling prophecy.  I hadn’t heard from the doctor by Monday but around 7:30 that night I got a call from the local hospital’s scheduling department saying that my oncologist had ordered a PET scan, which is a more intensive and comprehensive diagnostic test.

It was too late to call her to get details and but the implications were not good, something must have shown on the CT scan. Because I didn’t know what the results had been, I assumed the worst.  I assumed worse than the worst. All my carefully organized positive thinking flew out the window so fast I am surprised the glass didn’t break.  I was a MESS.   I had hours and hours to agonize over what had been found and each hour had me escalating fear and anxiety exponentially. 

  

One of the hardest aspects of not having a significant other is having no one to share the burden, to talk you off the ledge.  It doesn't help having my little dog, because she acts sadder than me when I am upset.  The cat only cares that I sit still and provide her with a comfortable spot to sleep on, so  that is not exactly comforting.  On a certain level, I absolutely do believe God is with me and loves me and symbolically holds me in His arms.  But when push comes to shove, there is nothing like a flesh and blood person sitting in front of you encouraging you to calm down.

As early as I could, I sent my daughter a message asking if she could give me just a little bit of her company.  I hate to ask.  She works nights and has two little ones.  But she was over within minutes, after getting my precious Maddy on the bus for school.  Her quiet, sensible cheerfulness made a difference immediately.  We called the doctor’s office to see if we could get some details, but she was with patients and I had to leave a message.  My daughter had to get going before I got a return call, but her visit had made me feel so much better. 

 

I didn’t hear from the doctor until late that evening!  This was a first where I had been left hanging this way, she is usually incredibly responsive and considerate.

 

It was not the dire news I had envisioned.  But it wasn’t exactly good news either.  There has been some change in the tumors and she wants a clearer picture, hence the PET scan.  She wants to discuss the possibility of Radio Frequency Ablation again.  That procedure had been considered last spring.  But it requires general anesthesia.  Because MS has partially paralyzed my diaphragm, undergoing general anesthesia would result in me being on a ventilator to breathe for me for the rest of my life.

I have been blessed with the most incredible network of loving friends.  But it is hard to stay strong when you are alone at three o’clock in the morning and your mouth is dry with fear and dread.  So it is back to the drawing board.  I have set myself up a regimen of prayer and meditation.  I am focusing on healing and reinforcing confidence in God to ease my fear.  I need tangible bolstering, so I am listening to affirmations, reading affirmations and setting my timer to regularly remind myself to pray and listen.  I am a walking Affirmation.  I am willing myself to eliminate fear from my consciousness.

When my youngest daughter was an adorably sweet and funny nine year old, she regularly drew me pictures to post over my desk at work.  I still have some of my favorites.  One said how much she missed me when I was at work and she wished she could be with me “the hole day”.  lol  Loved that one.  But the one I framed and have truly cherished all these years, even before I got sick, is this one.  It shows a tiny stick figure in a boat on the sea, buffeted by wind, waves and tornadoes.  Two large hands are stretched out over the figure and the words say “God will always protect you!”:

I have it in front of me now, my much needed reminder.  Please Lord, I pray, let me feel your comforting presence around me.

Amen.

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Do Not Fear, For I Am With You

I have been struggling with much grief and fear this holiday season.  My beloved family is fractured, some of my children estranged, it seems, beyond restoration.  Being a mother has been the bliss of my life.  Without them, meaning, pleasure, any sense of satisfaction, has paled, despite the outstanding nourishment of my many friends, my remarkable daughter, who is endlessly supportive and helpful, and my delightful grandchildren.  They are all wonderful and I am truly, truly grateful for their love and infinite encouragement.  But we always want what we don’t have, don’t we?   One of our great human flaws is a recurrent inability to be satisfied by the good that we do have right under our noses.  We long for what we miss.  And I miss my children with a gnawing pain that literally howls through my every waking moment.  I try to move on, I try to be accepting, but their absence is a bottomless pit of loss and pain.

Then there is the fact of the unknown.  With the spread of the cancer, it is literally a waiting game.  Waiting for the other shoe to drop.  Waiting for the inevitable day when my oncologist calls and the result of my biannual scan is no longer good news.  Fearing that the facts would be simply too hard to face, I have never asked or researched what exactly my prognosis is.  Last month I finally screwed up the courage and looked it up.  Breast cancer which has spread to the liver has a projection of three to five years from diagnosis.  I know it could be worse.  But I am greedy, another very human flaw.  I want so much more time.  I am already a year down.  I am sad and I am scared.

My faith has been shaken.  Yet another flaw.  I am the first one to admit, I am all too human and all too flawed.  But it has been awfully hard to remain reassured by the spiritual when the corporal is so spectacularly challenging.   Loss upon loss upon loss has worn me down.  The basest, most immature part of me cries out, haven’t I had enough already?!?  I know intellectually that life is just like that.  It doesn’t matter if you have tried to be a good person, tried to do the right things.  Good intentions + going to church + doing the best you can = health, happiness and success, right?  But there is no formula, no equation.  Stuff just happens.  

I have never believed God causes bad things to happen to us, I do not believe He visits disasters upon us.  I could not believe in a vindictive, punishing deity.  But lately I have found it is difficult to believe in any deity at all. 

I have received many Christmas cards this year from the delightful people I am surrounded by.  One card was from someone who is particularly special to me.  The day it arrived was an especially busy one.  Before I could open it, I was interrupted and set it aside.  Four days later, when I went to open it and reply, it was nowhere to be found.  I felt sick.  I turned every room upside down.  Because my mobility is so limited, there are not too many places I could have lost it in.  I went through every box and basket, every surface.  Nothing.  I chastised myself over and over for being so careless, so disorganized, so stupid, so thoughtless, on and on.  I automatically invoked Saint Anthony, every Catholic’s resource for lost things.  But I didn’t really believe a word of it.                                                                                                                                  

After another fruitless round of searching I collapsed in my recliner, utterly exhausted and discouraged.  I’ll just rest for five minutes, I thought, and then I will look again.  It must be stuck in something else.  I’ll turn out every catalog, every book I have laid my hands on in the past year, every container.  As I leaned my head back in the chair I noticed a small white envelope lying face down on the corner of my chairside table.  This is a tiny table, with barely enough room for my laptop.  I had searched for card on the table easily ten times.  I had picked the laptop up each time.  There had been no card.  It wasn’t there.  But it was now.  Perched on the edge, bright white, unmissable.  

I burst into tears.  I don’t ask for signs, I never have, even when my faith was at its strongest, I never felt comfortable testing God, demanding things.  It felt disrespectful and disloyal.  But I believed at that moment, with the inexplicable appearance of a card I had been searching for over hours, God had sent me a sign.  He had sent me a message: do not fear, I am with you.

After I had children, I struggled deeply with the concept of putting God before else, as demanded in the Bible.  How could I put anything before my beloved children?  How could I?  It was impossible, nothing meant more to me than my children, not even God.  I always felt guilty about that and even slightly fearful.  How much of a sin was it?  Was I dooming myself to eternal damnation because I was putting mortal beings before the Lord?  I decided it didn’t matter.  I loved my children more than life itself and if God didn’t understand that, oh well.

But here I was, facing Christmas Eve alone, the night we traditionally had come together as a family and celebrated the holiday.  The night I cherished as a representation of everything I loved most in the world, the night I had the opportunity, shallow though it was, to tangibly demonstrate my love for them by giving them things I thought would make them happy.  The sadness of being by myself, of knowing that they were deliberately choosing to exclude me from their lives when I needed them the most, was overwhelming.  I had laughed in God’s face and told Him He meant less to me than these people who were wounding me so deeply.  And He was saying, I am here anyway.

Some may scoff at what appears to be my fanciful superstition.  Some may say say that the card had been there all along and I just missed it.  Some may argue there is a perfectly logic explanation for missing that glaring white envelope all those hours.  And I might agree with all of them on some level.  But I am making a choice.  I am choosing to not be miserable.  I am choosing to be reminded that I am not alone.  I am choosing to not be afraid.  I am gratefully, humbly choosing to accept the gift of God’s love and comfort.

Isaiah 41:10

10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

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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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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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The Tattooed Lady

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

See if you can guess what it is:

This?

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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