Wednesday, February 29, 2012
First Three Weeks in Durham
As I write, Lisa is flying home to Orlando. She stayed with me three weeks—longest she’s ever been away from Dave and Cheyenne.
We’ve celebrated Lisa’s forty-fifth birthday twice—well really all week. When we thought she was leaving Saturday morning, we dined at BLU, the best seafood restaurant in the Triangle according to the Independent weekly—ahi tuna tartare, Cajun grilled scallops and shrimp with shitake over risotto, and warm chocolate cobbler with vanilla ice cream with a birthday candle. Lisa’s cucumber martini was too strong for her to finish. I took the tiniest taste on tip of tongue and my eyes rolled into the stratosphere. I’m avoiding alcohol. I’m bombarding my liver with so much drug destruction, whatever damage I can control, I must.
With all Saturday to celebrate, we drove ten miles to Fearington Village, a retirement community and cutesy faux farm featuring belted Galloway cows from Scotland and a village center with shops and restaurants. We lunched at the Granary, an actual nineteenth century granary. Lisa chose crab cake on a bed of couscous. I couldn’t resist the entre with my name on it—rosemary chicken pot pie with heavy cream. Oddly ironic that I’m struggling to gain weight after an adulthood of trying to lose. PF melts the flesh off bones.
After the Village, we stopped at Trader Joe’s for Lisa to stock up on treats for home and groceries. At Happy Hour time Lisa’s friend Karen arrived with a birthday chocolate cheese cake and flowers from Whole Foods. In case you’re wondering, yes, indeed, eating and more eating is a joy my daughter and I have always shared. No doubt there’s something to be psychoanalyzed there, and I’ve done it with plays, but not my own life.
Later I’ll describe recent procedures and reports, doctor and clinic visits. Not to brag, but I’m amazed at my progress in fitness. My Winter Park nurses prepared me well for Duke boot camp. Not only have I increased speed and power on track and bike and weights, but I feel stronger every day, even though I feel breathless and melted.
Monday, February 20, 2012
Arriving in Durham
The full moon danced along beside my window as my Jeep rolled up the road to Durham. We arrived at The Forest about 9:30 pm on Wednesday, 2/8. Lisa drove eleven hours. My apartment nestles into the Duke Forest, making every drive to/from the corner nest shown above a soothing trek through wilderness. The apartment complex across the road will fade from visibility as trees leaf out. With a new lung I will be able to walk into the forest not hauling an oxygen tank.
New address: 103 White Pine Drive, Durham, NC 27705.
On Thursday (thanks to Doris’s directions) we found Trader Joe’s.
On Friday we went to Orientation at the Center for Living at 11 am, and I didn’t emerge until 3:30 after a full physical evaluation and my first afternoon of exercises. Immediately my admiration and compassion for others treading the same track I’m on expanded. Some haul two big oxygen tanks on rollators. I’m only hauling one. We’re each struggling for the next breath.
Unless we have other appointments at the Clinic or Hospital, we are expected to be there five days a week from 12:30 to 4:30. After we check in, change out our tanks for theirs, get vitals taken, get our orders for the day, we do floor exercises—stretches with hand and leg weights. During a ten minute break we replenish fluids and munch granola bars, nuts, and fruit. From 2 to 3:30 we walk the track for 20-30 minutes, pump the nu-step for 20, and work through a different series each day of weight machines focused on building upper and lower body strength. I’m amazed at how fit we’re getting with a military precision we’d never have if we weren’t running from the swish of the Grim Reaper’s scythe.
Many walk track with oxygen masks which makes higher flow easier for nasal passages to tolerate When they put one on me last week, I got claustrophobic. I’ll practice at home walking and breathing with the mask. Last Tuesday my nose started bleeding from 15 liters pouring through my nose hose as I walked track for 20 minutes. Slowing my pace a bit so I don’t have to walk with 15 L flow for an extended period, I tell myself I’m working on endurance before pumping up speed.
We and our care givers have required lectures during that last hour Monday through Thursday on topics such as anatomy and physiology, diseases caused by anti-rejection drugs such as osteoporosis and diabetes, transplant procedures and research.
Dr. Davis, thoracic surgeon, that Lisa and I met on Monday, 2/13, was the same person that Doris and I met, but he seemed transformed. http://www.dukehealth.org/physicians/r_duane_davis My gorgeous daughter charmed him, so he directed most of his comments and eye contact in her direction. I'm a data-generating system with more unknown variables than he’d like, as are all lung transplant patients over 60. He can perform his art in the OR, but something out of his control can go haywire and he loses the patient.
Lately he’s noticed that patients over 60 who seem completely confident can “fall off the boat” (his term) mentally after surgery. How can he predict prior to surgery who will fall apart afterward? Men and type-A personalities seem more prone to break-down. Youngerpatients, being more predictable, give him more satisfaction.
There’s a shortage of donor lungs, and many end-stage patients waiting. Nobody knows who will perform the surgery. Three thoracic surgeons perform lung transplants. I perused the profiles of the others and found valuable research data on Dr. Lin’s profile: http://www.dukehealth.org/physicians/shu_s_lin
The drug-eluding stent put in my right coronary artery 6/2/11 when I had the heart attack my first week in Florida concerns Davis most. To keep the stent open a full year, I take Plavix. Coming off Plavix, as I must for any surgery, might trigger another heart attack, which Davis says would certainly be fatal in my case if it happened in the middle of transplant. He’d rather my lungs hadn’t declined so rapidly. I’ve been at “end-stage” for some time now, he tells me bluntly. I also require small lungs compatible with A negative blood.
I think it’s amazing I’m alive. I’ve beat the predictions of morbidity in 3-4 years for pulmonary fibrosis. I’ve had the dry cough symptom for 4 years. I had first diagnosis 3 years ago, although I wasn’t given the diagnosis from my PCP and put on oxygen until mid-April 2010. Davis is trying to balance the risks and benefits for patients and the precious commodity of a donor lung. He must be blunt in describing how the transplant surgery will ravage the whole body, so it has to be worth it. He’s going to have to tell some patients who’ve come for transplant that the risks are too great. Go Home. He doesn’t say, “Make peace and say goodbye,” but it hangs in the air.
Thursday we arrived early for my 1 pm appointment with my assigned pulmonologist, Dr. Gray: http://www.dukehealth.org/physicians/alice_lee_gray We didn’t emerge until 6 pm after a full array of blood tests, chest x-ray, and pulmonary function test with arterial blood drawn.
In waiting rooms I meet other pre-transplant patients. Patients not hauling oxygen stop to ask if I’m there for a lung transplant and then tell me they had one two or three months ago. They beam as survivors who’ve climbed the mountain and crossed the bridge and can speak with wisdom and triumph—an antidote to the Davis warnings. “Do you have Diabetes?” I ask. “What other complications?”
Finally at about 4:30 Dr. Gray’s nurse Kelly asks for updates since I was last there in Jan. I had a big one. During my three weeks of departure madness, in addition to farewells, visitors from afar, celebrating my birthday, and last minute appointments, a dermatology check-up revealed two basal cell carcinomas on my head and cheek. Dr Erica Savage performed Moh’s surgery the last week of January; stitches came out just before my birthday. (In birthday photos I’m masking the wounded left cheek.) Dr. Gray says that the anti-rejection drugs make me more sensitive to skin cancer. Having had it once, I’m even more at risk.
She lays down the law: I must take only Big Pharma approved drugs—synthetics instead of organics, switch to synthetic thyroid instead of the organic form prescribed by my Santa Fe acupuncturist, and forego all herbal remedies—no more blue green algae.
Lisa: What’s wrong with blue green algae? (Lisa is challenging my doctor.)
Gray: We don’t know what it is. It hasn’t been tested.
Lisa: It’s food. (Is she trying to pick a fight with my gatekeeper?)
Gray: It’s not regulated by the FDA.
Lisa: (Pause while Gray is listening to my lungs) What do you do to stay healthy?
Gray: (Cutting her eye sharply at Lisa) I work.
That silences Lisa. I feel her resentment, as if the doc is saying that flouncing around through alternative medicine is sprinkling pixie dust. Real grown-ups work. Lisa and I are both thinking that over working toward her own coronary isn’t helping our doc gray stay in the green or blue.
Gray says to us, “You can take your blue green algae all you want, but you can’t be in our lung transplant program." I all but shuffle and drop to one knee, trying to reassure the good doctor that, to use their terminology, I’m “compliant,” a term I’d never have used in to describe myself. I always argue and question, but not now. I must follow All team rules or be kicked out. I recall that I’m the one who taught Lisa to question authority. We had the bumper sticker on our frig in Winter Park. Nevertheless I get Gray’s message that everything I take must be FDA approved. Lisa may have charmed the handsome surgeon, but she’s ruffled the pulmonologist.
Lisa has been the ultimate Earth Mother here—washing all the towels, sheets and bedspreads. We’ve bought new clean pillows and mattress toppers.
Lisa’s Story of taking care of me: Each afternoon when I drop her off, it's like dropping off my child at summer camp, "Be safe, play well with others." Some days, as caregiver I have educational classes to attend. Yesterday, I learned all about Diabetes: how the pancreas supplies just enough insulin to balance the sugars we eat and take that sugar energy to the cells, and that because all the anti-rejection drugs are so intense during and right after surgery that 90% of patients leave the hospital with Diabetes. Quite shocking! However, they say that it could dissipate after 6 months-2 years. So they also taught us how to check our loved one's blood sugar levels 4 times daily and administer insulin. Another class that I'll probably have while I'm here is "Tube feeding;" not looking forward to that one.
Our morning routine: We each drink an Emercen-C and then a scrumptious blend of Hazelnut, Guatemalan, and French Roast coffee. Mom orders it from NY. Also, she likes a bit of dark chocolate with her coffee. Then I make us the green smoothies or sludge, which consists of fresh spinach and kale, banana, blueberries, strawberries, and whatever other fruit in fridge, Super Green Protein powder, frozen fruit, and some cranberry juice to help the blender beat it all to oblivion. At about 10:30-11 I prepare some sort of second breakfast/ early lunch, so she’ll be ready to work out. In the evening, I’ve enjoyed preparing some yummy meals of baked salmon, salmon over spinach salad, shrimp with pasta and pesto, broccoli Portobello omelet. Since we didn’t have much in the seasonings dept, I’m using fresh garlic and purple onion for everything.
We’ve enjoyed driving through Duke’s photogenic campus. While I was exercising, Lisa did what she called drive by shootings. Yesterday we drove through the downtown area and had coffees and shared a mousse at the Beyou Café. Lisa has connected with old friends Karen and Jeff who live here now. Last night we went to their house for dinner. Their three creative children (15, 12, and 9) entertained us throughout dinner.
Lisa is fixing chicken veggie soup for dinner on our twelfth day here—a productive one for both of us. I survived a virtual colonoscopy this morning and later a mammogram. I’ve avoided a colonoscopy for 72 years, but Team Transplant requires it, so be it. You’ve either had these or not, so no further details are needed. I wrote most of this yesterday while fasting and cleaning out my intestines. Lisa has at last hauled in my file boxes and done her fifth or sixth load of wash after returning from her third trips to Costco and Whole Foods.
Tomorrow morning I have an Esophageal Manometry test with a 24 hour probe to determine how often stomach acid refluxes into the esophagus. They insert a tube up my nose and down to my stomach and leave it in 24 hours. I have limited nostril space with my nose hose always in place. I guess I can claim to have been probed from stem to stern within 48 hours. I could never have imagined anyone needed all this data.
Lisa’s flight home to Orlando departs at 7am on Sat, Feb 25, her 45th birthday. Doris will arrive by car sometime on Sunday, Feb. 26. More on the Corrales departure later.
Monday, February 6, 2012
Farewell Florida
On Wednesday, February 8, Lisa and I will drive to the Forest Apartments in Durham, the ones Doris and I selected in January, two miles from Duke Hospital. On Friday, Feb. 10, I start Orientation at the Center for Living at 11 and the exercise workouts. We’ve speeded up departure when it became clear that Duke truly wanted me there ASAP.
On Monday, Feb.13, Lisa will meet the thoracic surgeon, that I vilified in my last entry. On Feb. 16, she’ll meet my assigned pulmonologist. She’ll wheel me around Duke Clinic and Hospital to other appointments for testing procedures already scheduled through Feb. 22, as Doris did in July, November, and January. Then she’ll fly back to Orlando, and Doris will arrive. Stay tuned for schedule.
Saying goodbye this week to folks I’ve known only a short time has been difficult, especially the nurses at Winter Park Hospital Cardio-pulmonary rehab. Even my massage therapist walked me and my oxygen and bags out to my car and hugged me. “I’m going to miss you. I’m not in this for the money. I really care, and you’re one of my favorite clients.” I was surprised and touched.
Dr Marlo and I were near tears when she tucked me into my Jeep in front of the Harmony Wellness Center. “I’ll keep reading your blog. Promise you’ll stay in touch.” I came away glowing with bliss from Marlo’s needles and healing energy flow on Thursday.
With an extra half hour in my schedule l allowed myself a detour to Azalea Park, my favorite Winter Park nature spot for thirty years. To my delight the bright fuchsia blossoms were already opening. I rolled down my windows and pulled out my chicken wrap. Everything was delicious.
Two white herons chose to entertain me. One and then the other swooped down from moss-draped cypresses languidly spreading and flapping their giant wings directly in front of my Jeep. They danced and preened. Then one after the other spread that incredible whiteness and slowly propelled themselves back up to bounce and sway precariously on tips of branches in front of me. When they found a good branch, they folded into their sleek profiles as if waiting for J. J. Audubon to paint their portraits. Good omen for the journey ahead!
Saying good bye to old friends from thirty years ago is impossible. I will see them again. Several have stopped by. On Wednesday, I had lunch with women from my old Pagoda community on Vilano Beach. Many now live at Alapine, deep in the woods on the northern border of Alabama and Georgia, where Doris and I visited them on our first trip to Florida in Oct 2010 for better breathing at sea level. How our fiery battles have melted and mellowed us these past thirty years.
Phone visits with really old friends keep me connected to our past histories. Two heart-warming conversations stand out. My best friend Kathleen from third through eighth grade at St Jerome in Chicago called, as she has several times, to reassure me of her prayers and thoughts. We reminisce about how much more adventurous our childhood and adolescent years were than those of our granddaughters under constant surveillance. She’s offered to add details to a draft of my memoir in progress in which she’s a leading character about our Nancy Drew escapades and third grade performances. Kate, a friend from forty years ago in Fayetteville, Arkansas, who visited me for five days in October, spoke of her Buddhist healing circles and the little black cat who’s adopted her.
While Doris was still here, Rita and Amy from Duluth came by for two days. Rita the chef brought scallions from her home garden up the north shore for the oven roasted veggies she cooked here with an organic chicken. The next week Mary Dee and Mary Helen who publish Women in Higher Education came from Madison bearing a big wheel of Wisconsin cheese. This week also from Duluth Deb and Dianna (just retired from UW-Superior) dropped in with a jug of maple syrup from northern trees and news of old friends.
For too short an hour Thad and Polly came by on my birthday afternoon. Polly brought me a jar of her 2012 homemade orange marmalade. Thad and I mused, as we have on my past whizzing through Florida visits, on the decline of humanistic liberal values, while bolstering our optimism with new causes or just leaning back surveying it all. Thad was President of Rollins College when I was here. He came a year before I did and had a hand in hiring me. He retired a year before I left. His departure prompted my moving on because I knew that Rollins would never be the same. I told them, as I’ve told many people, that my happiest years in academia were here, not just because I was young and full of hope in my forties (Lisa’s age), but because Rollins nourished and thrived on true academic openness to new, edgy, eccentric, wild ideas and people—like me .
Thad’s leadership showed me that a progressive visionary at the top can set the spirit for a whole institution and encouraged me to believe that I could be that sort of leader. I tried to reproduce the Rollins ambience in Missouri and Wisconsin, but it never quite worked because faculty didn’t trust what they’d never seen. They couldn’t believe it wasn’t too good to be true.
Turning 72
Compared to the seventieth birthday party shared with twin Nancy and fifty women, two years ago in Corrales, the group of ten in my apartment was subdued. My brother Jerry came from Omaha with his girlfriend Lorrie—first time he’s visited me in forty years. Lisa and I stopped for the night on treks across the great prairies—in 2006 on my move to NM and in 2008 on my way from NM to my fiftieth Edgewood High School reunion. We live in separate worlds but still speak the memories or our shared childhood. We both recalled a photo taken when he was five and I was twelve. The lighting captures facial bones and coloring, leaving no doubt of our genetic similarity.
Yvonne, Joan, and Rachel came with scrumptious dips and salads. Little Lisa, who calls me her second mom because she lived with us three years during their high school, came to help Big Lisa, her best friend, and sat at my feet. Cheyenne made a card about what she loves about Gram.
Fortunately I won’t be known as the woman who burned Auvers Village to the ground on her way out of town. But there was a moment of panic when the beautiful hot air (I Love You) heart balloon that Rachel, Lorrie, and Cheyenne launched shot its flames up and out over the dark pond and then caught a cross wind and flew back into a tree not far from a building. With no kite string to tether it down, the launchers jumped around waving their hands and shouting at it to come down as if it were a wayward cat. Then the wind shifted, the fire sputtered out, and the balloon careened like a large red leaf down to the water. Thanks, Rachel, for that splash of love and red siren excitement.
The gathering wound down slowly. When only Lisa and Cheyenne remained, I flopped on my bed wiped out, and they piled on the bed with me.
Saturday night Charles joined the group for dinner. “Have you seen the mermaid carved in sterling silver on my cane?” Charles asked handing me the graceful piece of Victorian erotica.
“What do you need a cane for?” asked Jerry.
“I’m an old man,” asserted Charles.
“But why do you need it?” continued Jerry.
“I’m an old man. I deserve to have a cane.” I was amused. They spoke on parallel tracks. Jerry searched for physical maladies. Charles was displaying an objet d’art. He always fancied himself a Victorian gentleman.
On Sunday Lisa and Cheyenne helped sort clothes. Later Rachel, a warm friend for twenty-five years, and her new wife Nicki dropped by for a glass of wine and sweet goodbyes.
On Monday (today) Jerry came at 10:30 for the best visit we’ve had in forty years. He told me about his success in selling security systems. Charles and Lisa brought us lunch. I gave Jerry a quick tour of Winter Park. They’ve all just left after we dined on take-out Chinese. Charles kept saying what an amazing convergence of relatives we were after all these years. It did seem a marvel to have my only sibling and my only ex-husband sitting side by side.
I don’t know how quickly I’ll be reconnected to the internet in Durham, so don’t be surprised if I don’t answer emails 2/8-12. Next entry will come from NC.
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