4/16/11
Teri came home on Monday April 4th after 54 days in the hospital. The first 100 days are critical, with the highest risk to survival. We are half way there.
You can’t believe how important milestone that is … after nearly a total of 6 months of hospitalization in the past 13+ months. Teri was literally going stir crazy in isolation! She barely looked out the window to see the emergence of spring.
MEDICAL PICTURE
The viruses are part and parcel of the post-transplant gap in immunity and are the cause of her suffering. The unrelenting hourly 24/7 bladder spasms from the BK virus in the bladder and kidneys is similar to passing a parade of kidney stones – it may go on 3 months altogether. The key tipping point was the placement of the nephrostomy tubes (back) to drain the urine from each individual kidney which relieved the obstruction to the ureters, reduced the hydronephrosis (dilated kidney collection system) and resolved the kidney failure, and, most importantly allowed her to get some rest and be discharged. In her pain-, sleepless- and narcotic driven-fog, she couldn’t glimpse any light at the end of the tunnel.
Yet the ‘big picture’ as the doctor’s say, inferring that Teri’s suffering above is the ‘small picture’, is an optimistic one. She has engrafted from both Ben’s and the baby’s stem cells 50:50. From engraftment, her marrow (garden) produces white cells, albeit they are too immature to help her fight off the viruses. She is not producing red cells or platelets yet. Also, she may have dodged graft-vs.-host disease for which she is at high risk where Ben’s or the baby’s lymphocytes (white cells) attack her own skin, liver and intestinal tissues as if they are foreign, unrelated! The team is optimistic that her own cancerous stem cells may have been wiped out.
HOME AT LAST
Returning home was a quiet affair without fanfare. Rachel and Jack just left.
Teri came home with 20 medications, two of them given as one hour IV infusions. She walks with a walker borrowed from my father. She sits mostly in a recliner surrounded by medications, drinks, IV supplies, emesis basin, get well cards, extra blankets and of course pictures of little Jack. She sleeps a lot, now in 3 hour stretches with 1-2 long daytime naps. She eats little, due to post-chemotherapy metallic taste, nausea and some vomiting. She receives Reike for energy rebalancing, TENS stimulation for pain relief. Eating, bathrooming, bathing, walking is slow, deliberate action great effort and required patience. Certainly much more work than when she was in the hospital.
Although we are home, we spend 10-11 hours every other or third day at the Hospital in the Cancer Center getting lab work, doctor/physician assistant visits, and receiving IV cedafovir, IV immunoglobulin, IV platelets and IV red blood cells. So it feels like home at least half-time, but at least her own bed to sleep in, without IV beeping, nighttime vital signs, night time lab work, hallway noises, code 7 calls, changing IV bags to arouse her hourly.
IT TAKES A VILLAGE …
It takes a village to care for someone with acute leukemia or aggressive cancer. Since the doctors said she must have someone with her at all times, I’ve had to rely on neighbors, friends and family, a lot. About 10 days prior to discharge, we were told that her slow recovery from kidney damage would delay discharge to the end of April. Once the neprhostomy tubes were placed, the timetable accelerated to the beginning of April. Our dear friend Sandy made many phone calls to neighbors while Rachel helped organize coverage for Teri’s return. Friends, Sharon, Becky, Michelle, Linda, Sue, and especially Sandy have all pitched in at home or hospital so I could cover my clinics, shop, etc. Phyllis her niece from IA and Becky her friend from NJ have spent days comforting, laundering, cooking, cleaning, healing, sharing … We have other family or fly-in friends lined up to help until the middle of May. We have found with Teri’s limited capacity that it takes two of us to manage all.
B
Many have asked how I am doing. I am sometimes too numb to say. I am tired. It has been a long 14 month haul with constant challenges. I am reminded of a classic Japanese movie Woman in the Dunes in which a man is trapped in a sand pit shoveling reaccumulated sand. Each day, I start over with déjà vu organizing her morning and evening medications, her food and supplements, her IV medications, her PICC line flushes, her TENS treatment … it seems neverending. But I am able to visualize the light shining ahead.
INSURANCE
On Thursday, we received news that MCW had decided to cover her first autologous (self) stem cell boost (transplant) and chemotherapy (altogether > 100K). We had been preparing another challenge to the third and final insurance denial. This is a whole other story in which we learned about the seamy underbelly of self-insured health plans (conflict of interest between insurer/employer and employee needs) and that the approval for BMT in minorities is stacked against minorities because only a few find a matched donor and fall off the matched donor ‘standard’ transplant track onto the ‘experimental’ deniable track. A whole other discussion. This insurance hell on top of medical hell has at times been too much to deal with. Our lawyer, fellow faculty, friends and oncologists all gave us support and strategic help.
BOTTOM LINE
Teri is gradually recovering, and now has a real chance to beat the leukemia. Since her transplant, we met several individuals who have been transplanted with a perfect 10 of 10 matched donor stem cells ... but didn’t engraft, and now, after the leukemia returned, can only receive palliative care. We daily realize how lucky or unlucky one can be throwing the transplant dice for one’s life stakes. We are fortunate in Teri’s roll that she is alive and has a real chance due to God’s grace, your prayers, thoughts, healing and help, our medical team, Teri’s fortitude and plain karma. We are fortunate ... and thankful.
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