VALENTINES DAY and life........ February 14, 2011

After the usual sponge bath, it felt great to unsnap and untie the lovely "flour sack print" cotton gown supplied by the hospital, the only type of garment I’d had on for a week.  My mother stared back at me from the bathroom mirror only she was 105 years old; amazing since she died at age 90.  I looked like Yoda as a rock star. My dirty-spiky white hair was going in every direction but camouflaged the bandages located behind my ear from temple to neck.  The doctors take special care these days to leave as much hair as possible to hide incisions.  I noticed even the patients with huge incisions,  brads and staples going every-which-way, had hair. 

I inserted my body into sweats, pulled a floppy hat over my tresses and I was ready to go home, to my bed.  

I opted to walk, no wheel chair, so Mark held on and away we went, down the long hall where I had practiced with the physical therapist earlier.  “Wide wheel base; focus on a stable point; keep posture straight; right foot, left foot.”  We turned right, another long hall. 

“Fast, fast, fast.  Slow, slow, slow.”  “Now put your feet parallel and stand,” the PT had said. I tilted.  “It’s okay, just practice this maneuver.”  “Now, walk steady and count backwards by seven,” he said.  “What?”  “Start with 97.”  “Hummmmm, 97.”  I stopped.  “What comes next?”  After a few attempts with sevens, he settled on 3’s explaining, “This is to show you can’t walk and think at the same time right now.  Your only job when you walk is to focus on walking, nothing else, or you will fall.”

Each step into the real world brought back fleeting memories of the experience.  The gurney rides, the pain, the voices and lights, tubes everywhere, injections into the IV’s, ice packs for my head, pillows fit here and there for comfort, bed up and down, head always elevated, more pain, more meds, a midnight MRI, nurses, housekeepers, getting up, getting down, the screaming lady down the hall, Andrew the amazing Aussie night nurse, doctors, doctors and doctors.

Mark and I continued.  I was “me” leaving  the hospital.  My body shivered and tears filled my eyes.  I began crying, sobbing, as we got on the elevator.  “What’s the matter?  Are you okay?,”  Mark panicked.  I was fine, great, but everything had changed. I came into the hospital on one side of life only to be rebirthed into a new world.  I survived.  It is done.

The ride back to Sonoma was beautiful but I viewed it from “underwater”, head stuffed and floating.  For my homecoming, Mark filled my room with all shapes and sizes of Valentine’s balloons, vases filled with flowers, stuffed animals and a stack of greeting cards.  No floral shop could have looked more “Valentine’s Day.” More tears!  I cried off and on for the next day.  I am grateful, blessed, wondering how to use this gift of new life.

THE BLUR, February 9 to 14, 2011

While medical science, our hospital systems and the entire profession is mostly hidden from our pleasant everyday lives, let’s recognize and salute the constant hum of activity, brain power, energy-output and pure love for humankind radiating from cutting edge research projects through to the mopping of crap off of linoleum floors.  I say, Hurrah! for each and every person working in this field, many on-call 24/7.

I remember little of the first days after surgery by design.  I could hear, quite distinctly, better than before the surgery in spite of the missing right ear, but time meant nothing.  There were flashing lights and searing pain but efficient people questioned, poked here and there and took it all away.  Pain management has evolved and pinpoints each nuisance.  After it’s over the medications keep us from remembering.  Can’t beat that!

I knew enough from my daughter's and Mark’s voices that all went okay.  My greatest challenge was the knifepoint being thrust through the center of my right eye and I was seeing multiple images.  The meds came, I slept.  By day three my vision was pretty good.  Seems the scar tissue from the Gamma Knife Radiation had worked its way around my optical nerves.  I had no apparent facial spasms or paralysis .  This is the first time in two years not to have at least a dozen a day.

My family was always with me to be sure nothing went wrong.  With so many pressures on hospital staffs it is critical you and your loved ones keep someone with your interests at heart nearby at all times.  I pity the people in this world who do not have a super support system.

My transition to life with no right inner ear happened sometime over the next four days with help from the RN specialists. They sat me up.  Many patients fall right over, unable to balance.  I did great.  I did the same once I was able to stand and then walk.  Wobbly, yes, but balanced!  I was a STAR!  Thank you yoga.  I hadn’t realized just how pervasive my “spinning” and “dizzy” issues had been but now realize I had compensated for years. 

I worked with Physical Therapists, dieticians and pharmacists.  The teams of doctors were in and out mornings and evenings along with the professionals assigned to the neurosurgery hospital wing.  I did exactly as I was told.  The aids, housekeepers, food servers, each and everyone were courteous and caring. 

By day six, Monday, I was pretty lucid in spite of my pain cocktails and ready to get some sleep.  Hospitals are not places to sleep or rest.;  too much noise and too much activity.  I passed all the tests required to leave…like pee and poop (big items in the process).  I had eaten very little, (anyone who knows me knows I am a champion eater) not that the hospital food was bad, but something happened to my taste buds.  Nothing tastes good.  I consider that a bonus.  I could afford to loose a bit of weight!  I would have preferred a spa trip, but this is what was given to me so I’ll take it.

GET THE SHOW ON THE ROAD......Monday, Feb 7, 2011

       

My sweetheart, Mark, took control Monday, loaded things into his pride-and-joy Jag and we headed into San Francisco, jazz classics streaming through the evening air, ready for Tuesday’s early pre-op visits and Wednesday’s even-earlier surgery. 

Mark is the only man I’ve ever had a relationship with that I can describe as a mature, whole man (I’ll admit here I’ve had more-than-my-share of relationships) .   First and foremost, Mark is a golfer, professional golfer, spent his entire life playing and working in the sport..  He approached this “keep-Meta-occupied” project like he does an important and precarious seven foot putt, calmly, studying pulling the putter out of the bag, stroking it, breathing deeply seeming totally in control to the outside world, (who knows what is going on inside?). He decides the line, does his little pre-putt-dance and, swings.  In the hole, or close.

Now, Mark does have his “golf moments” like the time a drunk-foursome behind us didn’t think we were moving fast enough so hit into me, ball bouncing a few feet away from my head.  He picked up the ball and threw it over a stand of trees into the adjacent fairway, turned around and continued play.  So, don’t mess with the man.  There are rules and they are to be followed.

I still feel like I’m entering a movie set when approaching the Golden Gate Bridge. Monday evening the skyline and bridge sparkled with crystal lights, no fog, and no clouds, unbelievable.  Mark drove me around his hometown and treated me to a huge Italian dinner. It was easy to sleep full of carbs and a little Cabernet.

We were up early,  doing the series of UCSF meetings and required tests.  I had lists of questions and took copious notes, then spent the rest of the sunny, beautiful day sightseeing.  The DE Young Art Museum was in between exhibits. We almost had the place to ourselves. We watched the crew moving several tons of ancient Mexican Mayan artifacts indoors. (hard to imagine this kind of stuff is hauled all over the world just so we peasants can see it.)  Then we visited an excellent exhibit at the Legion of Honor, “Pulp Fashion.”  An enormous, eye-boggling display of historic costumes by Finish paper artist  Isabelle de Borchgrave.  I could have stayed for hours but it was more a “girl thing” and Mark had even more plans.  The tulips were beginning to bloom at the Golden Gate Park Windmills (see photo).  I stuck to soups and salads not wanting to “gum up the works” any more than necessary.  After a Thai food dinner I did get some sleep and then we were off for the BIG DAY.

Just putting each foot in front of the other took all the courage I had. I was okay with the idea of dying, I wouldn't know, would just go to sleep and not wake up here.  But, the thoughts of severe pain, not hearing, not walking, being paralyzed, and other handicap visions loomed behind each deep breath I forced into my lungs.  I tried to appear in control but inside I was a wimp, a real coward.  Like John Wayne said, "Courage is saddlein' up even when you are afraid."  Thousands of people go through this medical drill and much worse each day, but when it’s you,  I guarantee it is not easy. 

I did as I was told like a trusting child. Lining up for surgery in the waiting room was a bit like a cattle call but it was organized and the admissions folks did all they could do to put the crowd at ease ….. (Moooooooo).

Once in my cubicle, I snapped on the cotton printed gown and got stuck here and there with tubes.  The medical staff at UCSF was excellent and kept patients comfortable in spite of all the strange comings and goings.  My teams of surgeons visited, again reassuring and calmly excited.

The last things I remember were lying on the gurney wheeling down the hall just like in my dream, but with no Richard Gere – darn!  Where is the man when you need him?  However, the anesthesiologist, Chris, was played by natural beauty Lindsey Lohan back-before-her-downfall .

COUNTDOWN TO SURGERY

 Ten, Nine, Eight, Seven, Six, Five……..

I’ve had my days of anxiety and fear but thank God for God.  I don’t talk much about my faith because I don’t make a good preacher but I couldn’t make it through a day of normal living, much less through a major life event,  without prayer and reading  the Bible.  It still amazes me how that book really does have all the answers.

I had wanted to get everything in order before being out of commission for a couple of weeks, or longer, hating to leave messes and incomplete projects scattered all over the place, but, alas, it is what it is and I’m sure my family and friends will do just fine as they kindly take care of me during the healing process. 

THANKS ! THANKS! THANKS!  to each of you for your prayers, many kind messages and requests to help in any way needed.  It brings tears to my eyes just thinking about all the love and well wishes…..like giant hugs only better!

To bring you up to date of the medical side of things….. The hospital and doctor’s assistants have called to double check insurance info and, I guess, to be sure I’ll show up Tuesday for the pre-op tests and interviews and then Wednesday at 6:30 AM for the operation.  The facial seizures, ear ringing, spinning episodes and hearing have become worse reminding me that “yes” it is time to get the show on the road.  I’ve had headaches and some sharp pain on the right side of my head and face; my right eye hurts.  These symptoms make it easier to have the surgery, like God tapping me on the shoulder, encouraging me onward. 

I had some great days while visiting Nebraska and meeting my newest grandson born December 14th.  I think he and I came to an agreement about crying and spitting-up and bonded while dancing and sharing family stories.  My other grandson and I celebrated  birthdays (his second and my sixty-ninth yikes – still can’t believe that number – thought I was still in my forties).   He taught me a lot about tractors, his main interest.  He is an expert already (It is amazing, really.)  (I mean, do you know what an Allis Chalmers front-loader is?)

My book's first proof has been approved.  I am thrilled about this although I had hoped to have it complete for Valentine's Day.  "Stories for Emma" will be available on Amazon by late March.     

I had a dream about being on a gurney, hospital gown in place, rolling “bump, bump, bump” down a bright hallway, turning, throwing me into the metal safety bars, people in teal jump suits running all over, smells of antiseptic in my nostrils, large double doors opening into a space-ship, more bright lights and instruments hanging from the ceiling, surgeon leaning over me saying, “Mrs. Strauss, Meta, can you hear me?”  Then he removed his mask and he was Richard Gere!  Now, that’s positive.  

LINK TO UCSF AND MY MEDICAL TEAM

My Friend Sharon

     Sharon would be the first to say each day is to be treasured and lived as fully as possible.  She told me this just last week as she prepared to have a heart ablation procedure.  Sharon reminded me to do everything I wanted to do, " like a bucket list," she said.  "We are a couple of old broads now and it's getting damned hard to deal with all these physical problems."  She was referring more to my upcoming surgery than her procedure which was supposed to be a fairly easy outpatient situation designed to get rid of disturbing rapid heartbeats she had been fighting for several months.  She had been in and out of doctor's offices, tried all the medications suggested but was exhausted from lack of sleep and side effects from the medicines.  She was confident about the outcome of her surgery, but worried about mine.

     Sharon never recovered consciousness once the ablation procedure began.  She had cardiac arrest, massive brain damage and died four days later. I am deeply shocked, saddened and already miss her terribly. I expect her to call me on the phone any minute to discuss our next shopping and lunch-out excursion, another idea for a trip, a movie she enjoyed, a politician she couldn't stand or one of her many social activities.

     Sharon and I moved to Sonoma six years ago and met through our local "Newcomers Club."   We became instant friends, discovering we were born one week apart.  Our lives had been very different until we arrived in Sonoma. She was a San Francisco liberal, animal lover, world traveler, single-all-her-life, career woman and I was a Texas conservative, married-all-my-life, career woman with children, and grandchildren. She needed a "roomy" (the name she called me for the next five years) so I joined her and three of her life-long friends on a four-week European cruise holiday.  Like everything that Sharon did, it was first-class, perfect.  We had such a great time that for the next two years, we followed up with week long spa trips to central California.  

     Sharon was always generous with her time and energy serving on numerous civic boards.  She was brilliant, opinionated, great fun and an excellent cook and hostess.  Her home and garden were "magazine" beautiful, and she shared everything she had liberally with her many friends.  

     Sharon Durbin, you will be missed!

Onward

What a journey life is!  Today I feel so much better about what's going on with the doctors and the decision about the type of surgery.  I heard from Dr. Parsa's office and the two doctors DO agree about the method of surgery!  I really needed to know for sure.  Now I can enjoy the next few weeks.  

Still Undecided..but committed

Drawings of Surgery for Acoustic Neuroma   LINK

                     Just before Christmas I met with the second member of the neurosurgery team, Dr. Steven Cheung at UCSF (otolaryngology- special expertise with acoustic neuromas).  I had seen Dr. Cheung several times before deciding on the Gamma Knife Surgery (radiation), but not since.

            I was nervous,  anxious to hear his opinion about my tumor expecting some simple explanations. But, not so!  His consultation was educational and challenging because he insisted I (me, not them) had to decide what to do after evaluating the various options.

            I could choose not to operate now at all, to wait longer and see if the tumor grows, how much, at at what rate.  However, it has been steadily growing for the past six years in spite of the Gamma Knife Radiation which should have stopped the growth.  Fact: The larger the tumor and the older I get, the more risk the tumor is to my health and the more difficult the surgery.

            After concluding the surgery is the only option I see as viable (and Dr. Parsa had already advised it and sooner rather than later), Dr. Cheung gave me two types of surgery to consider. (This was new information and the reason Dr. Parsa wanted me to meet with Dr. Cheung.)

            The first is retrosigmoid, an advanced technique with the goal of preserving some of my hearing hoping for limited damage to the facial nerves and balance system.  This is the method Dr. Parsa seemed to advise and it sounded good until I met with Dr. Cheung.  He explained this is the more dangerous surgery with the downside  involving the cerebellum, so it is riskier with a myriad of possible side effects. If I was young and had more hearing left in my ear than I do, this would be the route to choose.

            The second is the older method which seemed to be the best for me, translabyrinthine. The huge downside to this technique is that the entire middle ear would be removed leaving me with NO hearing EVER in the effected ear.  

           Entering the site this way gives the best line of sight to the facial nerve allowing a higher chance of  less damage to that nerve. (75% chance I won’t have any additional facial nerve damage).  The facial seizures making me look like Popeye are a nuisance but not the main problem.

           I was told the balance problems I’ve had would go away (80% chance).  The damaged right middle ear would be absent causing the left middle ear to take over.  After some retraining, the brain is supposed to adjust and use only the left middle ear as its balance center.

            The balance and dizzy/spinning episodes are driving me crazy so it would be fabulous to get rid of them.  HOWEVER, after reading reports on the Internet, MANY people continue to have serious balance issues, regardless.  I consider the balance problems to be as horrible, maybe more so, than the hearing loss.

            Dr. Cheung gave many pros and cons of both surgical options not wanting to make the decision for me.  As the meeting concluded  I felt clear that for a person with a tumor the size of mine and for a person of my age, the translabyrinthine method was wiser.

            Here it is January 9, 2011 and I have told the doctors I’ll choose the surgery that will do away with my right-ear hearing which I hate to do. (my family says "You can't hear out of it anyway; even with your hearing aid."  But, I say, "I treasure what hearing I do have, especially when listening to music.")