Denver Trip & Health Report

June 2011 Solstice Letter Part A

Denver trip

I leave my ocean retreat at noon Monday, June 20.  Lisa drives me to the Orlando airport.  They allow her to drive my wheelchair to the gate.  On my four-hour flight, I need to change the battery on my oxygen concentrator only once—a maneuver that requires dragging the machine from under the seat to my lap and pulling a 6-lb brick out and sliding another in.  Slick job for a weight-lifting contortionist!

When our flight arrives, I’m the last kid off the bus because we have to screw my machine back on its cart, plop me in a wheelchair and pile 40 lbs. of machine and attachments and my shoulder bag on top of me for wheeling down the ramp. At the gate, I wait for a cart, which takes forever--or maybe 20 minutes. The cart cruises gates until it’s full, slowly shoving its way through oblivious walkers (no beeps) to a waiting station where each of us with various mobility needs is loaded on wheelchairs (40 lbs on lap) and wheeled to a freight elevator where my driver crashes the protruding handle of my cart into the door.  Doris, who’s been waiting in cell phone parking more than an hour, is anxious. Have we lost cell phone connection?

Finally re-united, we’re giddy with joy to touch each other at last, sniff our familiar scents, and take up our familiar witty banter.  We head for dinner at the same franchise we’d found six weeks ago—Macaroni Grill in Aurora.  Waiter David greets us as regulars. Doris has already checked in at Best Western, where we’re definitely frequent flyers—our third stay since the week there in Aug 2010 when I’d had the lung biopsy.

On Tuesday we spend 10 to 2:30 at NJH.  (Health Report below.)

After NJH, we return to our motel.  Doris generously allows a bit of our precious short time together for my visit with an old friend now living in Boulder.  Gloria, whose play “The Postcard” is in my Amazon All Stars collection, comes to our room.  We last saw her in 1994.  She stayed with us in Springfield, MO, on her cross-country drive from Woodstock, NY, to LA to try her luck as a screenwriter. There she discovered that everyone has a screenplay.  After that adventure, she found a real (paying!) job based in Boulder.  I’m happy to hear of her recent successes, 15-year relationship, and new house.  She leaves me a copy of her brilliant new play.

Now Doris and I face a crisis.  I can’t fly tomorrow without a cart for my oxygenator, and she needs tools to repair the broken one.  We call 800 numbers and local ones and find a medical supply just 15-20 minutes away where we can buy a new one.  $70 later we’re off and rolling with more info from our new friend Nick about oxygen equipment than I’d learned from my ABQ oxygen supplier or my respiratory therapists at pulmonary rehab.  He sells me a sturdier, longer lasting oxygenator ($700) for daily use here in the condo.  I can save the fragile Sequal Eclipse on wheels ($3000) with a shorter lifespan for plane trips only.  The new machine arrives via UPS next week.

            Fortunately Doris and I have leftovers from last night.  Neither of us has energy to forage for dinner.  We can relax now and enjoy our last night together for a month.  Being apart like this seems unbearable until Doris reminds me of my four months in Scotland at the end of 2007.  But then I was ending my 40 or so years of professorial vicissitudes and heading for blissful leisure in the land of enchantment in the casa of our dreams.  Now we’re headed we don’t know where.  We’re being ground in some character-testing crucible we didn’t choose.

            Making it through the Denver airport the next morning is so grueling I almost can’t bear re-living it in words.  Parking illegally, Doris finds someone from Frontier to wheel a chair to her car to take me to check-in while she parks.  Unlike Orlando, Denver won’t allow her to wheel me to the gate.  I must go through the whole chair-cart-chair routine in reverse.  Doris calls 20 minutes later frantic.  “I can’t find a parking place.  I’d have to take a shuttle to a remote lot. We’re out of time.”  We stoics sob shamelessly—no final hugging, no warm skin grazing. 

I flail my arms to get a Frontier person’s attention to find a wheelchair for the first leg of my trek through security.  I must disconnect from oxygen to walk through the screener.  The belt with my machine on it halts while screeners slowly scan other bags.  My oxygen is dropping and my heart rate accelerating dangerously.  Finally I’m reconnected and re-loaded on a chair to the next post to wait for a cart.  I enjoy cart-driver Phyllis, a retired nurse.  I imagine I might spend the day riding her cart because it seems inevitable I’ll miss my flight.  But after cruising the entire airport picking up strays and not crashing into clueless walkers, she delivers me to my gate and a chair—last passenger on board.

            My two women seat-mates are graciously accommodating and slide out to let me unscrew my machine from my new cart, stow the cart above, stow the machine under the window seat below, slide in, buckle-up, and assess the damage.  New bruises are spreading on my arms, a cut bleeding, and a hematoma rising on my right shin from one of the chair-cart transfers. The kind flight attendant brings me a band-aid and ice for the shin before take-off.  My seat-mate helps me change batteries in-flight.  The flight goes fast.  Gloria’s new play has me riveted.  My seat-mates and I share travel disaster stories, which I’ll resist re-telling.

            After the battles of Denver, Orlando is easy.  I know the airport. Wheelchair driver Nick is adept and cheerful.  I have one more need.  In addition to carrying my bag of batteries and other equipment, and my shoulder bag, I’m also hauling the broken cart with wheels to make a damage claim—no time in Denver.  But there’s no Frontier Customer Service at Baggage Claim.  We’re sent back up to Ticketing only to discover Frontier has closed down for the day.  So we take the elevator back down to claim the suitcase Doris brought me from Corrales with clothes and other things I’ve requested for Florida.

Dave rolls up just as Nick wheels me outside, and Dave’s buddy Mike rolls in behind him in my Jeep.  I want to kiss its cherry-red hood.  Instead I hug my efficient son-in-law and peel off eastward on the Beachline Express.  I call Cheyenne and suggest she get her mom to have us all meet at Friendly’s about 6 pm.

At last I call Doris to see where she is in her 8-hour homeward trek. She’s just north of Santa Fe.  She’s not admiring the Sangre de Christo Mountains as usual but horrified at the red haze from Pacheco fires still burning.  “It looks like volcanic ash.”  The breath-taking landscape we love has become truly breath-devouring as it flames and blows into ash.  A friend responding to my current personal crisis asked if I was channeling planetary disaster through my body.  Not to be grandiose, but yes it feels like my body has become a microcosm of Mother Earth.

I join Lisa, Cheyenne, and her friend Emma about 6:07 for a high-fat, high-carb feast concluding with gooey ice cream concoctions for all. I’m so happy to be back at the ocean I can hardly peel myself off the sofa.  I lounge on the bed while Lisa unpacks my suitcase, marveling that Doris’s crisp ironing survived. We four play Apples to Apples till 11. My rollicking family leaves about 2 pm on Thursday.  I’ve enjoyed them but happy have my solo silence again.

Health Report and life distractions

            My lung disease is given various names.  Initially it was called Pulmonary Fibrosis (PF) on the radiologist’s report that my then PCP read me on the phone 8:30 pm, March 23, 2010.  I looked it up on the internet and read: “fatal, incurable, progressive, morbidity in 3-4 years.”  My heart stopped.  Dr. Fernandez at NJH prefers to call it Interstitial Lung Disease, but it seems to be the same thing, or one is an umbrella term for the other. The open lung biopsy with tissue samples ten months ago provided a more specific diagnosis of the inflammation leading to fibrosis so it can be treated by specific drugs. Hypersensitive pneumonitis responds to steroids.  Thus I was put on 40 mg of prednisone for a 3-month trial (9/10-12/10).  My sweet ABQ pulmonologist Ann DeHart, MD, determined from new chest X-ray and blood tests in Dec that my disease hadn’t responded enough to the drugs, so she tapered me off by 5 mg every two weeks down to 5 mg.

As I tapered off prednisone, my lungs declined Jan-April, judged by my accelerating need for more oxygen.  Dutifully I dragged my gasping body through pulmonary rehab, pumping up my oxygen flow, desperate to stay strong.  Now I know I should have returned to Fernandez in Jan., but I had other distractions.  Joanne Passett came for three days in early Jan to research my Lesbian Nuns archives and interview me for her book on our book.  She’s an ideal scholar, writer, sister for this project she chose (PhD in both history and library science, track record of successful books).  All day long we read and discuss my file of letters from contributors.  She tapes my memories of working on the book and the tour.  Her visit energizes me into speeding ahead on my memoirs from the 80s here in FL before and after LN publication changed my life.   

I was also getting ready to perform Mabel end of Jan. at San Juan College in Farmington. The night before, I bent down to pick up papers, and my lower back snapped—a spontaneous compression fracture in L-5.  Prednisone accelerates osteoporosis.  My bones are so thin they crumble.  I performed my full show for 120 people in a packed theater and answered questions as Mabel and then myself on pain killers and oxygen—about an hour and half.  Afterwards pain and breathlessness engulfed me, but during the whole flow of performance I wasn’t in this body: I was Mabel in 1935.

Now red siren pain took center stage. I assessed remedies.  Kyphoplasty?  I chose a cortisone shot directly into the injured site, and it worked like a miracle so that I could fly to FL mid-Feb for almost 3 weeks to see if I could breathe better at sea level.  Yes! But I had to return to NM to greet old friends coming for a visit—Peg and partner from Maine and Matile from SF.  Last week in March Lise came from Switzerland, and I performed Mabel for a women’s group in ABQ while she was here.  Doris and I enjoyed Lise’s hilarious stories of her life in Russia and as an international diplomat.  I met Lise as Sandra’s old friend when we both participated in the International Women Playwrights Conference in Manila in 2004.  Lise was Swiss Ambassador to the Philippines and carried us in her chauffeur-driven limo to remote northern territories where we were greeted as visiting dignitaries from Australia and the US.  Doris and I visited Lise in Switzerland in 2007, while I was on week break from teaching in the Wisconsin in Scotland program that final fall term. 

From Jan to April Democratic Women and Corrales vs Intel activism was using up time and energy I probably couldn’t spare.  In Feb. and March I was taking an intensive 8-week online Memoir Writing Workshop with Lisa Dale Norton and eleven excellent sister writers whom I’ve not met in person but know intimately.  For that I wrote drafts of LN memoirs that have kick-started me down that important road.  I wasn’t paying attention to my deteriorating lungs (and heart).

My ABQ allergist called me mid-April and insisted I return to NJH and called himself to get me in fast.  In early May Fernandez said we must take aggressive action. Prednisone shouldn’t have been tapered down but ramped up. He put me on 60 mg daily and immune suppressant Azathioprine at 50 mg to increase to 100 mg in ten days. The morning Lisa and I were departing Clarksville, AR, I woke with an itchy rash that spread over my body in the next two days on the road.  I coated my body with hydrocortisone cream.  Finally at Lisa’s house in Orlando I read the drug warnings from the pharmacy.  I was having a “Call your doctor immediately” allergic reaction to Azathioprine.  Fortunately Fernandez reads his email and responded: Stop immediately.  He prescribed Cellcept, which would also prepare my body not to reject transplant.  We were headed to pick up that drug when I had the heart attack.

On my recent Denver visit, Fernandez said my lungs sound better than they had in May. We’re concerned that Duke Transplant Center might reject me because of the heart attack, but I’m still scheduled for evaluation there July 118-19.  Fernandez ordered a chest X-ray, blood tests, and pulmonary function breathing test.  When I got to the PFT lab, the tech and her supervisor determined I didn’t have the stamina for it—too risky considering my recent cardiac event.  They’d just wheeled somebody out on a gurney who’d collapsed with chest pains during the test and was now speeding in an ambulance to an ER.

I’m waiting to hear results of tests from Fernandez.  He and my cardiologist Kothari here in FL need to coordinate my amazing daily cocktail of drugs to be sure they’re working together and not blocking one another.  Meanwhile, I’m still breathing mostly attached to my oxygen concentrator.  Once I sit down and relax, I can turn it off. But moving around the condo, I need it.  When Lisa returns on Tuesday, I’d like to try walking down to the beach with her carrying my oxygen tank. I don’t think I could do it today.

My diva backstage friend from International Women Playwrights who does make-up for NY fashion shows, seeing the bruises on my arms in posted pictures, gave me a hot tip on how to dissolve them faster: daub white vinegar daily.  So after lunch yesterday with my old friends from Winter Park, we picked up my new first-aid remedy.  After daubing my blackish, purplish, reddish blotches up and down my arms, two realities hit me: I smelled like a cucumber salad, and vinegar was triggering a coughing jag.  I spread my wings to get the vinegar away from my nose and flapped them gently, the way I’d seen the seagulls gliding by my balcony do when they kick up acceleration.  Think of me as a flying cucumber salad with purplish wings.

            I’ll post Part B of Solstice letter on my life a year ago and my evolving consciousness next weekend.  HELP! I’m searching for healing beyond aggressive Western medicine drugs: gifted, intuitive, spiritual healers—healing touch, acupuncture, hypnosis, snake oil, anything here in central FL or along Hwy AIA from the Space Coast to Melbourne, FL.