Sunday, January 22, 2012
Lungs 2012
The call from Duke came about 11 on Friday, 1/20/12, as I straddled the edge of the treadmill at Winter Park Hospital Cardio-pulmonary rehab about to hit start button and step on for a mountain climbing twenty minutes.
“It’s Khara at Duke. Good News! Everything checked out fine last week. We want you to relocate in Durham as soon as possible--in two to four weeks.” My legs turned rubbery. It’s sooner than I wanted to leave Florida, but not unexpected. “Let us know when you arrive and where you’re staying so that we can set up more tests.” Breathless even sitting with my oxygen turned up, I felt the room and its shiny machinery swirling around me. This is what I’d hoped, and now it terrified me.
“What if I can’t be there that soon?” I asked. “Could I come in six weeks?” Doris has at least six weeks of work scheduled in NM after her sixteen days with me in FL. Can Lisa drop everything in her busy life so soon to spend two weeks or more with her mom until Doris joins me in Durham sometime in March?
“We need you to be as strong as possible going into transplant,” says Khara. That means a minimum of twenty three sessions in our Center for Living.” I know that. It will take five or six weeks of five day a week sessions four hours a day from arrival in Durham to be listed. “We don’t want you to become so sick that you can’t survive surgery. Pulmonary fibrosis is tricky. You can plateau for months and then fall off a cliff. We have to be ready for that.” That reality scares me on a daily basis.
I know how difficult getting enough oxygen has become lately. For 1.8 mph on the treadmill I need 10-12 liters continuous flow and sometimes 15 (highest it goes). I need 8-10 to walk to the car or into a restaurant with someone carrying my heavy tank or pushing it myself on my rollator. To get the rollator out of my Jeep, fold it out, and do it in reverse when I’m leaving, I need a helper. For Duke Doris and Lisa are my primary and secondary caregivers. But anyone strong enough can swing my tanks and wheels around.
Several have asked, “When is your transplant scheduled?” Nobody knows when a lung donor will die just when I’m at the top of the lung recipient list with a lung that fits me (small size, A negative blood). “You top the list,” as Dr Fernandez at National Jewish Health put it, “when you’re the next to . . . [hand gesture: palm up and then down].” I won’t know I top the list until I get the call.
When I’m close to top of the list (lungs fading out but the rest of my body-mind-spirit hearty from workouts), I get a beeper to tell us when there's a lung for me.
We had to make some quick decisions on Friday before Doris flew home on Saturday morning. Lisa has agreed to move me to NC mid-February. We’ll take a minimum of files, books, clothes that we need for 3 to 6 months in a furnished apartment. Before and after my tests 1/9-13, Doris and I visited four complexes that cater to medical patients near Duke Hospital. We like Kim’s suggestion, The Forest, less than a mile to exercise and three to Duke Clinic and Hospital.
Next time I’ll give more information on departures and arrivals and my heavy social calendar for the next two weeks leading to my birthday. Let me know if this has too much detail for you. Tell me your news.
Tuesday, December 27, 2011
Welcome, Winter Light!
As the light returns and the year turns, I wish us all a brighter, happier, healthier 2012. I hope we can embrace connections with all life on the planet.
Here in Florida for the past seven months my blessings abound. I’ve grown closer to Lisa and her world than I ever imagined. Lisa and Cheyenne unfold like high wire acrobats, full of the energy, vitality, and silliness. I’ve relished reconnecting with old friends around the world—visits, phone, email—as I treasure encounters with strangers.
I’ve learned to ask for help—to find my lovely acupuncturist Dr. Marlo waiting for my Jeep to roll up so she can carry my oxygen and bag in, to take the arm of the dental assistant carrying my bags out the door as I tell the receptionist that we’re going out dancing. Because I’ve been forced to slow down and see more, I’d like to believe I‘ve grown in compassion for those enduring far more suffering.
All my life I’ve craved solitude for reading and writing. Now that I have it in abundance I haven’t kept track of all the books I’ve read. When I hit a low point, Close to the Bone: Life-Threatening Illness and the Search for Meaning (or as a Soul Journey in a revised edition) by Jean Shinoda Bolen (Touchstone, 1996) helped me put my own descent into darkness in a symbolic context that consoled me.
I’d enjoyed Bolen’s Goddesses in Everywoman decades ago and was receptive to her mythic approach. She takes Persephone’s abduction into the underworld, the Descent of Inanna, and Psyche’s last tasks as metaphors for what we face living in the shadow of death. These stories light a path to spiritual and psychological growth. Lighten your load. Cut to the bone to find out what and who really matter now. Ask the big soul questions: Why am I here? What did I come to learn, heal, do? Who and what did I come to love?
Illness that leaves you scared and shaky, dependent on others, gasping for breath forces you to slow down and strip down. Inanna’s Descent into Hell resonates for me. The Queen of Heaven and Earth must divest from all her comforts and symbols of power and authority until she’s dead meat hanging on a hook. Only then she can be reborn. How does your soul expand through crises you didn’t choose?
Bolen offers advice for the assertive and curious to resist being obedient patients passively accepting that medical world can fix everything with drugs and surgical weapons. We must strip away people and anything that no longer rings true and create our own healing circles and strategies. I’m still searching.
Welcome, Winter Light and Darkness!
Sometimes I want to howl like the coyotes I remember in the night in Corrales. I miss Doris—seven months living apart. I miss my circle of memoir writers and tarot readers, all my NM friends, parties, political rallies. I miss ABQ theatre, any theatre, performing Mabel, writing play reviews. I miss casually cruising art festivals and galleries, buying jewelry from Native artists, discovering NM culture.
I miss Corrales, living in our beautiful casa, watching the mountains change color, enjoying our Southwest art everywhere. I miss my library and particular books that I had to give away in May. I miss travel just for fun. I miss taking walks, swimming, yoga, going and doing whatever I want whenever. I miss my energy, vitality, independence, autonomy. I miss my previous body and life.
Doris arrives here next week and stays with me 16 days, most of it to, from, and in Durham, NC, where we go for a full week of grueling tests 1/9-13/12. The following week Duke will tell me when they want to see me again or when we need to move to Durham. Duke wants me living in Durham two months before they anticipate doing the transplant surgery in order to get me as fit as possible.
After surgery I'll be in hospital for 2-3 weeks and then at least two months of rehab exercise. They advise planning to live in Durham 5-6 months. After that, we'll move on somewhere, but we don't know where. We'll have time to consider options in that post-transplant period. We must sell the house in NM before we move to Durham so that Doris is free to leave Corrales.
I hate to admit what a news junkie I’ve become this month. I thought I’d ordered the Sunday New York Times only, but the daily paper started appearing—my mistake—and I got hooked. I’ve become embroiled in the insanity of struggles and suffering around the world. Will the wise and good-hearted win over the greedy and cynical? Of course, we all have a bit of both in us. In January I switch to Sunday only.
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