Not a hernia.

I had a hernia.  It was an annoying little bugger that managed to make me gasp occasionally and often felt like there was a runners cramp in my side.  Being the type of person that I am, I researched it a bit, read a little too much information, and became quite frightened that it had managed to somehow strangulate itself and a slow painful death was imminent.  I went to the ER when I first found that curious little bump and the doctor didn't seem too concerned and told me to schedule with a surgeon to have it repaired.  I explained the odd sensations that I'd had, and told him it just didn't feel right, but he was unimpressed and sent me away.   The surgeon's office was equally unimpressed with my concerns and I managed to get an appointment 3 months away.  So I waited.  I waited when it hurt.  I waited when my insides felt like they were coming outside.  I waited when I suddenly got terrible heartburn from eating bland food.  I waited when I was scared that the little hernia was rapidly becoming more then a minor annoyance.  I waited until my surgeons appointment was only 2 weeks away and I found myself angry enough to go back to the ER and tell them that I just couldn't wait anymore.

The ER doc came into my cramped little room and told me that my hernia wasn't strangulated according to the CT scan.  My relief was short lived as he added that there was a "large mass" located behind the hernia on my scan.  Mass.  What a terrible word to hear.  He told my hubby and I that it might just be a lot of blood that got left behind from my year old hysterectomy.   I could deal with that.  Old blood seemed a nasty thing to have pooled inside, but they could just suck it out with a big needle or something and I'd have my life back (after a quick hernia surgery).

It wasn't blood.   The ever powerful scan readers working behind some Oz like curtain and making decisions about  who lives, who suffers and who dies, had decided that I should suffer a bit.  My mass was solid.  My mass was large, about the size of a big Florida Grapefruit (why fruit?  Grapefruits are ruined forever now), and my mass was a mystery.  I had been admitted to the hospital by this point, and spent 2 days in a strange dilaudid induced haze.  I slept for a minute or two in between bouts of vomiting from the darkest headache I had ever known.  Eventually the staff realized I was having a bad reaction to the pain meds and switched to clean and simple morphine.   I could push the button to morphine heaven every 10 minutes and spent hours watching the clock, waiting.

I had my first ambulance ride when it was decided that a surgical specialty not available at the first hospital would be needed. No lights or sirens,  I watched the cars behind us as the EMT gave me a dose of some pain medicine and then told me I was "crashing".  I saw the monitor reflecting my blood pressure flashing and going lower and lower as the EMT gave me additional fluids to compensate, and I continued to watch the cars driving by and wondered if this would be how I died,  quietly watching cars in the back of an ambulance.   I stabilized and was rushed to the next hospital, once again in a morphine timed haze, I barely touched the surface of the questions I wanted answers to, or the things I wanted to say to my husband and my kids.  Morphine takes away the what ifs and made my world a 10 minute spin.

I'd been hospitalized for 4 days when they decided to do a CT guided biopsy.  I wasn't sure what I expected but I know I didn't think I would be laying on my stomach in the CT scanner with a giant biopsy needle pushed through my lower left back.  It was scary, and it was painful, but I think the pain was worse because I had looked at the biopsy gun the Doctor was using.   I had to wait in the CT while the 5 biopsy samples were sent to the lab to make sure they were viable, which took about 20 minutes.  Thankfully they were good samples and I got sent back to my hospital room with the morphine drip to wait for the results.  The Doctor seemed to be leaning towards  GIST - Gastrointestinal Stromal Tumor, at this point.  Turned out it wasn't a GIST, it was a new monster I got to add to my dictionary, a Desmoid Tumor.

Desmoids are rare, 1 or 2 in a million kind of rare.  I never even get the lousy $3 wins on the powerball and the odds are much more likely for that then this....this invader that was taking up a pretty large part of my middle abdomen.   Surgery was planned, I was still on my 10 minute morphine spins, and then I was rolling down the hall and fell asleep.  About 11 hours later I awoke, barely, and apparently I spent the next 4 days in and out of consciousness.  I've been told, with giggles now that it is all over and I'm "recovering", that every time I awoke, I would look at my hubby, Jeremy, the poor tired out man, and say "What happened?  Do I have cancer?" and he started by answering carefully, detailing little things about the operation, and statistics about desmoid tumors, all while holding my hand and trying to comfort me.  I would fall back into a momentary peaceful slumber, then reawaken with a start and ASK THE SAME DAMN QUESTION....over and over again.  My daughters Zoe and Becca said it became somewhat comical, and Jeremy's answers became more and more clipped, a short version, the amnesiac version, his frustration only balanced by his fears.  After 12 (or was it 13, I really don't know) days in the hospital, I got to go home.  I have Frankenstein scars in every which way across my tummy, and I could only sleep in a recliner for the first week because laying flat on a bed was too painful.

I am recovering.  I am learning a new kind of strength with baby steps.  I am starting a fight with an enemy that hides for weeks, months, years, (sometimes, a whole lifetime....I am really hoping for this option!), and then it rears it's ugly tumor head and can grow at astonishing rates.  They think it took my tumor one year to go from nothing to the size of a grapefruit.  In one year!  My surgeon told me if it returns, it will be inoperable.  You see the nasty thing about these Desmoids is they come back in the same, scarred, vulnerable spot, again and again.  My "spot" is where the surgeon had to take out 12 inches of my small bowel and weave around my arteries.  So, if the monster returns I am going to have to fight it within.

I cry a few times a day.  Over silly things.  I think it's more a reaction from all of the pain medications and the anesthesia than anything else.   I was clicking through the available Amazon movies list the other night, looking for a distraction, and started crying when I saw "God is not dead" as a movie title.  The tears are brief and I try to make sure I'm not feeling sorry for myself, the good Lord knows I'd rather not waste any time on self pity.  I'm going to focus on my faith.  I'm going to focus on my family.  I'm going to focus on my fight.

Loss

Photo by Amanda

I always try to find a title, and then start writing.  I sit and stare at the blank page, and feel overwhelmed at the possibility of what I could fill it with and then try to conjure a concise title that collects all of that possibility into a few words.  Or, sometimes, just a word.
Today.  I typed Loss.  What a word that is.  Forlorn looking on the empty white space.  The hiss of a future with pain as it lingers on your lips.  Loss.

I've been pretty fortunate in my life.  Loss was a word used in terms of a game, or a small misplaced item, occasionally my pride and sometimes I used it in reference to my mind, but I never felt the sting of it's bite until 2 years ago when I saw the footprints of loss in the eyes of my daughter, Alee.  My happy-go-lucky-world-is-my-oyster little girl lost a dear friend, Dawn, and in turn I felt the loss of my sweet daughters smile.  The loss of her quick laughter, her bright eyes reflecting an adventure was the tragedy to me, I hadn't know her friend, only knew of her, and felt the sorrow of a story I'd only heard and not lived.   My daughter had suffered more than anything I can imagine, for I've lived that fortunate life, and something dark grabbed the light that made my beautiful daughter whole, and she was left feeling something I didn't know.  Loss.

I drove from Minneapolis to Kansas City during a blizzard because I thought I could fix things.  The 7 hour drive took me 16, including a forced stop at a rest area when they closed down the highway because the blizzard was too dangerous to continue driving.  My daughter didn't answer her phone that night.  I laid in a cold car under the orange sodium glow of a street light, snow swirling around the windows as it piled around the car, and I prayed that somehow my daughter would have the strength to keep her faith and find that light that made her whole.

When I arrived in Kansas city, I found my sweet little girl curled up in bed at her friend Amanda's apartment, red eyed and holding a miniature pig that tried to bite me as soon as I walked in.  Laughter can cure so many things, but sometimes the loss is too deep.  We had coffee.  Alee and I.  Alee, Amanda and I. Coffee with friends, coffee outside, coffee inside.  Coffee with crepes, coffee with more friends.  Finally we could laugh a little and I knew I could go home.  I couldn't fix anything at all except a tiny little piece of my heart that held fear, so I just held my daughter tightly for a moment and took a deep breath and prayed for her wings to take hold in this dark place that I didn't know.  Loss.

That girl of mine has a wandering soul, and decided to leave the dark behind and travel to somewhere brighter.  She called me up and said "I'm heading west momma.  Something in my heart wants to be by the ocean and to climb some mountains."  "Then go west sweetheart." I replied.  Well, truth be told it included warnings and discussion of car repairs and tires and all of those things that moms say when their kids wander beyond their reach.  So she did.  She found new friends that helped her cover the hurt just a little.  She was distanced from the tragedy, and she started to smile again.  I worried but no longer suffered sleepless nights because my sense of loss had diminished, my Alee got the twinkle back into her eyes.

A year after her great Western adventure started Alee and I both got a dreaded phone call that her childhood friend, Amanda, had attempted suicide and was in the hospital.  We both started making frantic arrangements to get to Kansas City.  Beautiful Amanda, who had lived with us off and on during her teen years, who called me mamma Morton and knew she could walk in to our house without ever knocking, whom I had nursed when she was sick, held when she cried, and spent many hours on our front deck laughing with a big cup of coffee and eating some strange wholesome baked vegan concoction, yes, dear sweet Amanda died, while another "foster mom" held the cell phone to her ear and I said goodbye.

This is where I started to question faith.  I doubted God.  Not just his wisdom, but his existence.  I doubted salvation.  I doubted everything I'd ever been taught to believe.  And in the blink of an eye and a whisper, I felt it.  Loss.

It's been almost a year now.  I've lost 2 things this time.  My daughters quick smile has vanished again, but I know that it's there, just waiting for that sense of safety to reappear.  I know she will be ok, she is busy finding a new sense of normal in this crazy mixed up world.  I have also lost Amanda.  I have her clay tea mug sitting in the cupboard, and I think of her every morning when I grab my coffee mug to start a new day.  It has stopped hurting to see it sitting there.  I am now to a place where I understand that she is free from burdens I can't understand because she carried a loss bigger than I will ever know inside of her.  It sorrows me greatly to know that instead of sharing that loss in life where we could have divided and conquered the burden, she has shared an irreparable form of it in death, and now all who loved her carry its weight.  Loss.

I'm working on my doubt.  I think I'd fully turned my back on God for a while.   Belief  is wrapped up in so many things and the walls I had built around my heart are open when sometimes my mind is not, and other times my mind is willing but my heart is not.  They seem to coincide more often now, and I think that is a good sign.  In the quiet moments, in the darkness I have come to know, even just for a moment, I feel the warmth of faith.  Faith is the greatest thing to lose, I have learned.

We miss you Amanda.  We found joy, even in the darkness.