2/6/11 -- Life is good
Teri feels good … in remission
Teri’s bone marrow was clear on January 14th . It does not mean that all the cancer cells are gone but they are likely below the level of detectability. Most importantly, it means that we can proceed with a definitive bone marrow transplant in hope of a cure. If the biopsy were positive, we could only proceed with palliative care.
We are nearly at the one year anniversary – February 10th – of the diagnosis of leukemia.
Teri feels good right now. Her personality, her spirit, her energy have returned. She is still underweight with the aftereffects of chemotherapy. Our home pulses with life, energy, warmth, music, her aesthetic touch – and partnership of doing things together – that I had sorely missed for nearly 3 months.
Off antibiotics and IV fluids and blood products for first time in 111 days – the PICC line was removed on Jan 24th.
Teri has done some things for the first time in a year:
1st dinner party where friends did most of the cooking
1st road trip to Columbus
1st eating out in Chinatown, Chicago – something we used to do frequently
1st movie outing
1st ballroom dance lesson – on her bucket list
The big event was our trip to Columbus (home of 15 years) to see grandson Jack. We watched him for hours and witnessed his first roll over. Little Jack watches everyone and everything (TV, books and mobiles) intensively. He smiles at the prompting of “little champ” and “little bun”. He ‘reads’ intently with us. He changes daily. Teri couldn’t get enough of odor de babee. John and Rachel are great parents and enjoy his every little nuance. They have names for his activities – tummy time, sleeping in the fort (pillows), doing the Riverdance – you can visualize. They have the latest musical/massaging/rocking swing and swaddling blanket. We also saw our gourmet club, Teri’s Asian Womyn’s group that she helped start and Columbus International Program friends that we hosted.
Teri is preparing, cleaning, sorting, organizing, donating, dumping and teaching me more about the folder location, fiscal aspects, Dad’s care … preparing for the worst.
The transplant
The chance of relapse stands close to 100%. The last time it happened within 5 months of remission. We are already at the 2 month mark. Dr. H. doesn’t want to wait.
In the hope of potential cure for AML, bone marrow (stem cell) transplant is the best option. When one doesn’t have a related matched donor (sibling or parent), or unrelated … one has to go to mismatched or alternative transplant route.
On the recommendation of the oncology team Teri will undergo the following protocol (therapy). She will receive a haploidentical transplant from son Ben and a partly matched (4/6) umbilical cord from an unknown donor. This combination will give her the best chance of survival.
1. 2/8 Teri will be admitted to the Bone Marrow Transplant (BMT) ward and get a PICC line placed.
2. 2/9 Teri will receive 2 kinds of chemo drugs for 4/5 days. She will also receive other drugs to help prevent graft vs host disease.
3. 2/14 Teri will receive total body radiation to kill the cancer cells and stem cells.
4. 2/14 Ben will have his stem cells removed at the Cancer Center here.
5. 2/15 Ben’s stem cells will be infused into Teri. His stem cells will grow first in Teri’s bone marrow to provide the all important neutrophils to fight infections like VRE that she contracted in November.
6. 2/15 or 2/16 the umbilical cord stem cells will be infused into Teri. These new cord cells should eventually reconstitute Teri’s bone marrow from Ben’s cells and produce the entire complement of white cells, platelets and red cells.
7. Teri will be hospitalized for up a month.
What is the outcome? Teri has a 1/3rd chance of mortality from the bone marrow (mostly from infection), 1/3rd chance of survival but relapse of leukemia, and 1/3rd chance of cancer-free survival or cure. I’m so used to looking this as cost-benefit preferably low and high respectively, but in this case it is reversed, high and low. It is daunting to consider. Besides opportunistic (common bugs that affect immune compromised patients) and superbug infections, she can get graft-vs.-host disease in which the transplanted stem cells from Ben or the cord blood will attack Teri’s tissues.
So what would you do? If you had to have an elective surgery, with 1/3rd risk of dying from the operation and 1/3rd chance of cure, you wouldn’t ordinarily take those odds, as compared to an appendectomy with 3% risk and 97% cure rate. But if it is your only chance …
As we mulled this over with our oncologist/BMT transplant expert, in the end, we had to throw out the numbers. It essentially comes down to an all or none decision to go for broke or do nothing. If one does nothing, it is 100% relapse rate and with each relapse, the leukemia becomes more resistant to treatment. At the end of her last hospitalization in December, Teri’s body and spirit were so ravaged by the harrowing bout with the superbug that she said that she could not survive the transplant. As she became rejuvenated by Jack and family and friends, her energy, fighting spirit and joie de vivre have returned.
Teri: I am kicking butt again. But not without ALL of you kicking butt too. I still have everyone’s cards saved, hanging on the walls of our home, inspiring her. If you’ve been here, it is quite amazing. The latest is a collection of paper snowflakes from my sister’s class that hang from the ceiling turning gently in the air. I am blessed with so many people who care of me and B as well. I have been told that there is a good book called 20 Things People Who Have Cancer Want You To Know by Lori Hope – check it out.
One thing for sure, Teri wants compassion, not pity or advice.
Battle on the 3rd front – insurance.
Six days ago, on her birthday, with all of the transplant wheels turning we received a call in Columbus from our oncologist, that the health insurance company had denied coverage for her planned transplant scheduled on 2/15/11. Besides leukemia and the complications of neutropenia, we are fighting on a 3rd front.
MCW is self-insured so that ironically it is our selves through an administrative company Principal Insurance that denied it.
What does it say when the cutting edge treatment of one of our MCW family (Teri) that is recommended by expert MCW physicians is denied coverage by our self-insured MCW program? We don’t provide the best of care of our own family? As all of my colleagues agree, it is an outrage.
We approached the interim Dean and the CEO of the Medical College. They are negotiating with the insurance co. but so far they have not budged. They are classifying the transplant as experimental and nonstandard when in fact all mismatched transplants are governed by National Cancer Institute approved protocols. The Wisconsin law states that insurance companies can’t refuse study based treatments. Right now, we are proceeding into this as self-pay!
Teri raises the question of what her life is worth. The cost will be $700K to 1+ million. Should we go to a lawyer, to the press? It is the last thing we want to contend with as we attempt to enter this with a positive attitude.
What a roller coaster we are on.
At last
Teri: After what I survived last time, it will take more to take me down. I am going back in with more resolve and determination to Kick Butt again. Help me imagine that I will be infection free and not suffer from the side effects of the drugs. Help us imagine that the transplant will be successful. B’s dad has been having such dreams where I am cured. I always tell him to continue to have those dreams. He smiles.
Please send all your best wishes, Reiki and prayers to Teri as she embarks on her penultimate challenge.
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