Thursday, January 22, 2015

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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Thursday, December 25, 2014

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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Thursday, November 27, 2014

Giving Thanks



I offer thanks today for all the good I have in my life.  

I am so grateful to God for putting in my path so many wonderful people who are so good to me.  My caretakers who provide me with help so that I can stay home as long as possible.   My doctors who work so hard to keep my complicated health issues organized and who do it with warmth and compassion.  Professionals who have helped me with business issues, without judgment or criticism.
 
But most of all I am thankful for those of you who are so good to me on an everyday basis.   Those of you who offer me empathy and encouragement and unconditional love, you are what keep me going.  You all keep me from folding under the weight of everything I have lost and make me appreciate everything I still have. 
 
That is my Thanks Giving.


 



Words my loved ones live by:

1 Corinthians 13

Love

13 1 What if I could speak all languages of humans
 and of angels?
If I did not love others, I would be nothing more
than a noisy gong or a clanging cymbal.
What if I could prophesy and understand all secrets
 and all knowledge?
And what if I had faith that moved mountains?
I would be nothing, unless I loved others.
What if I gave away all that I owned
and let myself be burned alive?
I would gain nothing, unless I loved others.
Love is kind and patient, never jealous, boastful,
 proud, or rude.
Love isn’t selfish or quick tempered.
It doesn’t keep a record of wrongs that others do.
Love rejoices in the truth, but not in evil.
Love is always supportive, loyal, hopeful,
 and trusting.
Love never fails!  Everyone who prophesies will stop,
and unknown languages will no longer  be spoken.
All that we know will be forgotten.
We don’t know everything, and our prophecies
are not complete. 10 But what is perfect will someday appear,
and what isn’t perfect will then disappear.
11 When we were children, we thought and reasoned
 as children do. But when we grew up, we quit our childish ways.
12 Now all we can see of God is like a cloudy picture
in a mirror. Later we will see him face to face.
We don’t know everything, but then we will,
just as God completely understands us.
13 For now there are faith, hope, and love.
But of these three, the greatest is love.

  
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Friday, October 31, 2014

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 60th 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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Sunday, September 21, 2014

Now We Are…Sixty?!?


Gosh.  How on earth did that happen?!?!


At any rate, Happy Happy Birthday to me and to Bruce (Springsteen, of course) whose b-day precedes mine by a few years but follows mine by a few days.  How is that for a riddle?  Extremely lame?  Yes, I agree, but what can I tell you, I AM lame.  ha ha ha ha   I know, I know I am hopelessly corny.  Happy birthday Bruce and thanks for being a remarkable entertainer and human being.  I know some people consider him controversial, but there cannot be any argument about the abundant good works he does, many of which go unknown.

A retrospective on The Boss:

As for me, it has been quite a sextet of decades, that is for sure.    I have had amazing experiences, 
ups and downs.  While the hard stuff has been extraordinarily challenging, the good has been so spectacular that it far outweighs the bad. Most of the good has revolved around my children.  I was blessed to be mother to four cherished human beings.  In ways they will never know, they have provided me with moments of such pure, sparkling joy that I am literally left without words.  Those times, some simply seconds of an exquisite baby smile or a spontaneous, merry hug, shine up through the years.  I hug these memories to myself. They are my treasure.

Even though every day brings struggles, I have so much to be grateful for.  It is hard, especially when I’m dealing with a lot of pain.  But during the hard times, I pray and then I list for myself the things I am so lucky to have.  My darling grandchildren and my wonderful, generous friends.  I still have a roof over my head, although I am not sure for how much longer.  Then there are the little things.  A perfect cup of tea.  A good book.  The tactile satisfaction of embroidery, like painting with thread.  The soft murmur of rain.  My little dog who wants nothing more than to be adored and my even littler cat who is a constant source of irritation but she is unfailingly attentive and as a result it is hard to dislike her.

I miss my mother particularly on my birthday.   We had a fractious relationship for much of my life, but we were so different we were bound to clash.  I was not what my mom had wanted or expected in a daughter, I had wildly divergent values and goals from hers.  I simply bewildered her at times.  As I got much older I made an effort to understand her and not deliberately provoke her by challenging her ideals and taste, as I had for such a long time.  My sister and I had many a good cackle in private, but I was truly sorry I had disappointed her and then rubbed her nose in it.  I talk to her all the time now, telling her how much I regret our lost time.  I believe she is watching over us from her place in Heaven, where she is healed and happy.  Believing she is happy and at peace at last gives me great satisfaction.  But more than anything I wish she was still here. 

One thing I have been especially grateful for has been the opportunity to express myself through this blog.  Writing has been one of the most rewarding things in my life.  The sheer pleasure of stringing words together in a way that appeals to people has been a delight.  Sadly, someone I love deeply and whose opinion matters to me, recently told me that they considered my blog something hateful and destructive to our family. I have never deliberately done anything to offend anyone I love, so I was stunned to hear this.  The idea that something I was having such fun with unknowingly caused hard feelings just sucked the spirit right out of me  The accusation has tainted what had previously been such source of pleasure and I have had a hard time finding my way back to writing.  But I am trying and also trying to be attentive to anything someone might find objectionable.

Moving on….



What could be nicer than a window seat and a book on a rainy day?   
  
I have amended A. A. Milne’s sweet poem.  My bit, with abject apologies to Mr. Milne, is added in bold.


Now We Are Six 
 
When I was One,
I had just begun.
When I was Two,
I was nearly new.
When I was Three
I was hardly me.
When I was Four,
I was not much more.
When I was Five,
I was just alive.
But now I am Six,
I'm as clever as clever,
So I think I'll be six now for ever and ever.
 
Then came some more
Although never a bore.
Decades happily full
Eventful, without any lull.
Ten then twenty then thirty
School, wed, babies, much glee.
Forty cheerfully came
With much of the same.
Fifty arrived with unwelcome news
An illness, alas, would give me the blues.
Now we are sixty, struggling and stressing.
But the Lord, dear friends and loved ones surround me with blessing.    

I am so happy to be here still.  Happy Birthday, me!



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