Monday, October 24, 2011

Continuous Deluge of Disaster

First and foremost, thank you Allie for the diaper coupons.  I’ve been holding on to them, waiting for us to hit bottom to use them.  And this week, bottom hit us hard.  The diaper coupons really, really helped.  The baby is so prone to rashes.  We have to change him religiously or he gets nasty rashes that are so hard to clear up.  He has a small rash right now.  We’ve been staying on top of it.  But we go through diapers like crazy until it heals up.  We even try using homemade diaper inserts to conserve.  Thank you so, so much.

I wrote earlier about HOPE.  HOPE is the worst thing a terminal cancer patient can experience.  HOPE is thrown at you from all directions by doctors, health care workers, everyone to prevent one thing – suicide.  I don’t understand it.  The health care workers are so adamant that cancer victims fight for that last breath, that last minute with family – to what end?  The cancer victim spends their last days puking and shitting themselves to death.  They are so sick that they want absolutely no company.  Conversations and socializing are just a painful task that reminds them they are dying.  What’s the point?

Against my best decision – to die with dignity and plan my last moments while I am still alert and able – I let my family talk me into staying long enough to try the surgery.  Keep in mind, the surgery is not a cure.  I am terminal. Surgery – if it is successful – only extends my life a few years.  And during that extension, I must deal with the aftermath of the surgery.  I will have no esophagus.  Nutrition will occur through a plug in my stomach wall with a nightly drip.  All food by mouth will be soft – baby food, pudding, jello, etc.  Many surgeries will follow the first, in order to widen the scar tissue in the throat for breathing, to plug leakage, to clear paths for swallowing, etc.  And I agreed to all this simply to make my family happier with the upcoming finality of my life.   

The past two months have become sort of a lull while waiting for the actual commitment to the surgery by the surgeon.  I sit here waiting for the continuing deluge of disaster.  And sure enough, it hits … our furnace and hot water heater went out all at the same time.  The furnace is 50 years old.  We did an $800 repair on it December 2009.  But now it’s lost its last leg and is leaking carbon monoxide.  It cannot be repaired and must be replaced.  At the same time, the water heater has also ended and must be replaced.  Estimates for the furnace have run $3800 to $7000.  The water heater will be about $400 installed.  On top of all that, the 50-year breaker box on the house also has to be replaced to handle the new furnace and other electrical items.  The breaker box has been flipping out every time we start the dryer or washer, or try to run a microwave or other type of appliance.  The box is so old; they no longer sell the breakers for it anymore.  Cost estimates on that have been offered at $700 to $1800.  That’s almost $10,000 in repairs due all in one month.

At this point in my life, it just doesn’t matter.  It’s like putting a bandaid on a gaping wound.  If something costs $100, we couldn’t afford it.  So $10,000 might as well be a million.  The only way we can handle this will be to scam it.  See if we can get financing for it and then hope we can make the $100 payment for a couple months that is also totally out of our reach.  I will have to sell our food and some of our bare furnishings just to make a couple months of payments.  We’re thinking about selling our queen bed and using some old twin beds for ourselves that we were unable to sell before.  And I have one ring left, I’ve been unable to sell.  I’ll try to sell that again.  I hate having this to worry about when I’m going to be having surgery.  The doctor says I need to be stress free prior to the surgery to help it be a success.  Well, that’s easy for him to say when he drives to work in his BMW after stopping at the Wynn for lunch and giving his landscapers instructions for his new yard.  He has no concept of being poor and dying poor.

My father always told me, “If it weren’t for bad luck, we’d have no luck at all.”  And it’s been true all my life.  Bad first marriage choice.  Thirty years of crap with him.  Years of fighting with an ex spouse over custody and child support.  Years of staying with him – for the children’s sake.  Elderly parents who are dying slowly and who need my care.  A child with a drug problem.  A grandchild with learning disabilities and seizures.  But I dealt with these problems – all this bad luck, and I think I dealt with them well.  I loved being a super mom.  I involved my babies in sports, soccer, cheerleading, drama, dancing, and just anything that added to their lives.  I drove a van, picked up their friends, planned great parties for them, camped with them – and enjoyed every minute with my children.  My children and grandchildren have been the one bright light in my life.  I loved rocking and smooching my babies and grandbabies through their sickness and happiness.  As my parents weakened, I responsibly stepped forward to provide their care without regret. 

Other than my children and grandchildren, I had little to no happiness in my life, and no good things to enjoy or celebrate.  Then my second husband came along, and I thought my “luck” had changed.  He was the dearest, sweetest, most loving man – and still is.  I would think, “If I can grow old with him then I cannot want for anything else.”  I didn’t care about losing everything and becoming dirt poor.  I didn’t care about leaving my beautiful home and moving in with my parents to take care of them.  I didn’t care about things like nice cars, fancy clothes, elegant dinners, or expensive vacations.  My children and he were enough!

But bad luck is part of my make up.  It follows me and pounds me into the ground.  Not long after moving in my parents, I was diagnosed with several debilitating diseases all at once.  So much for growing old with the new love of my life.  Within the timing of one year, I was diagnosed with rheumatoid arthritis, severe degenerative disc disease, fibromyalgia and multiple sclerosis.  Of course, multiple sclerosis was the worst diagnosis among the bunch.  It meant that would die much sooner than the ordinary length of life, plus I could end up in a wheelchair for the last few years.  The MS was very active when diagnosed and at the time I was experiencing weakened limbs, my legs collapsing under me, and vision problems.  All this was going on while I was providing end-of-life hospice in-home caretaking for my mother.

I faced it all.  If this was the end of life for me, I could handle it.  I had anywhere from three to ten years before the multiple sclerosis symptoms were severe enough to take away all of life’s pleasures.  I planned to enjoy my husband as fully as possible before I became incapacitated.

Then the bad luck struck again.  Over and over through my life it strikes.  Never giving me any rest.  A big black cloud floated by me and grabbed my throat, squeezing the little life I had left out of me.  CANCER.  Not just any cancer.  Not breast cancer or some cancer that has great bounds of donations and research for cures.  No.  It had to be a rare cancer – Esophageal Cancer.  And the diagnosis had to come after it hit the non-curable point – Stage 3 to 4.

Treatments, a small lull, upcoming surgery … more bad luck.  Over $10,000 in repairs strikes all at once for a new furnace, water heater and electrical breaker box.  Things we cannot live without.  Even if we try to finance the furnace and electrical items under my father’s credit, can we even afford the payment?  Not likely.  Plus we still need to scrape up enough to replace the water heater.  Why am I depressed?  Because I never see the rainbow.  All I get is the down pour of continuous black rain and lightening.  I’m so very, very tired.  I just want to go to sleep and not wake up to another problem or more blackness.  I would love to wake up to just one morning of bright skies, shining leaves, and flowers – but that’s probably just a description of someone’s funeral.

1 comment:

  1. Well reading this is a depressing thing. I can't beleive that life can be that unfair to one person. I wish I could help you, but I am in Canada and we all have our issues. I don't agree with the surgery. The surgery is a big deal and recovery is long. If you are Stage 4, what's the point? It's the cancer elsewhere that makes you terminal - like the liver, etc. Bless you.

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