Diary of a Transplant: From Source to Source

2009-07-01T19:58:00.003-04:00

A year later. President Obama is starting to turn the health/sick care machine in a new and hopeful direction. And my story has quieted to a quarterly visit to my new oncologist here in Asheville. My bloodwork is telling a story of holding on for dear life. I'm no longer being looked at as a candidate for a bone marrow transplant. The diseases are still there but somehow strength flows through me. I tell people, "The factory is, indeed, broken, but is still managing to produce a decent product." None of this makes sense, but my hospice experience tells me that most of the really big things don't. So, I'm grateful beyond words and desire to live into this time of reprieve from the horror of a transplant procedure. And so we go on. In gratitude.

Back to work . . .

2008-08-19T18:47:00.002-04:00

and meaningful work it is. The following was written for the Givens Estates Gazette for August 22, 2008: My mother had a saying for when things seem to return to the same place we left them: "The King of Spain marched up the hill and then marched down again." Well, I'm marching back to Givens Estates and as of Friday, August 22 will be working part time with Joe Fulk in ministries on Fridays, Saturdays, and Sundays. And I'm happy and grateful to have this opportunity to be back where I belong, at least for the present moment. The many physicians who have attended me and reviewed my illnesses during these past months simply do not agree about the best course for me at this time. Conversations continue and I hope that resolution will come soon. But in the meantime I see this as a gift of time to return to Givens, fulfilling my vocation and visiting among you. Please know that my desire is to be here for the community. I want all of you to see me as a whole person who wishes to be of service and to be in ministry. I've done little for these past three months except deal with my health issues. You would do me a great service if you would let me return to some normalcy simply by being with you, praying with you, and enjoying your companionship without a focus on my concerns. I'm so looking forward to seeing folks and catching up.

Excerpts from a letter

2008-08-12T21:36:00.003-04:00

My mother had a saying she would pull out when she wanted to describe an event in which we went out and came back without having accomplished our intention. “The king of Spain marched up the hill and then marched down again,” Evidently it’s based on an actual military maneuver now lost in history. It also is a pretty apt description of my summer. While it’s not accurate to say that things haven’t been accomplished, it is accurate to say that I’ve “marched down again”. I have made a strong decision to pick up the threads of my life, weave them into a slightly different pattern, and so we go on. The medical community has yet to come to consensus about when is the time for me to have a bone marrow transplant. Most opinions vote for now. However, the physicians hired by the insurance company hold the power and their opinions indicate that I should wait. For what is unclear, but the point is that I closed my spiritual direction practice at the end of April because I had full expectation of going off in May to Baptist Hospital at Wake Forest for treatment. That didn’t happen and I’ve sat and discerned that I’ve waited long enough. I’m going back to work at Givens Estates in a week or so, this time part time and only with ministries which will lighten the load considerably. And I’m resuming my spiritual direction practice as of the first week of September. My energy level is better. The break from work at Givens has been beneficial. I feel restored enough that I long for the meaningful work of my vocation.

Meaningful Work

2008-08-12T21:20:00.003-04:00

Tuesday, August 12, 2008 I'm going back to work at Givens Estates, the United Methodist Retirement Community in Asheville which I left at the end of May in expectation of going quickly from there to Wake Forest for the bone marrow transplant. I'll be working twenty hours per week, doing pastoral ministry only rather than the combined work with programming. I begin again at Givens on August 22. Also I'm making plans to return to my spiritual direction practice at home, beginning in September. Both of these opportunities are gifts of meaningful work. The next post is a portion of my letter to those who had been coming for spiritual guidance. It says more about my joy at returning to spiritual direction, both as a guide and as a receiver.

Some things I've learned since January 15, 2008

2008-08-05T21:32:00.002-04:00

August 5, 2008 Some of the things I’ve learned and unlearned since January 15, 2008: (Subtitled: Why I needed a retreat/vacation from myself as well as from further information.) (Alternate subtitle: Crazymaking!) For one hematologist I am one of three patients in his entire career and practice who has presented with the anomalies (especially of the platelets) particular to this progression of diseases. A search of the literature is required because there is no experience of fibrosis of the marrow (which everyone agrees I have) developing into chronic leukemia (which now almost everyone agrees I have). I had a 10%-15% of developing acute leukemia from excessive platelets and fibrosis. I have acute leukemia. I have chronic leukemia. Chronic leukemia develops into acute leukemia. There is only a 3% chance of chronic leukemia developing into acute leukemia. There are yet other diseases of the marrow which may develop if I do not have a bone marrow transplant now. I have lymphoma. At this early juncture the leukemia and lymphoma are “the same thing”. There is no lymphoma anywhere except in my marrow. I have lymphoma cells circulating through my lymph system now. I need transplantation now due to my age (60). Transplant centers routinely transplant people 65-70 with success. The diseases and progresses can be monitored and may not exhibit full blown symptoms for as long as a “few years”. At this time the risk of dying from bone marrow transplant is greater than the risk of dying from advancing diseases. I will do well with a transplant. Bone marrow transplant is my only option. Now. Disagreement: When is the optimum time for a bone marrow transplant? Under what criteria? How bad does “disease progress” have to get? How bad do I have to feel? Do the criteria involve only the objective evidence? I have advancing fibrosis. I have evolving fibrosis. The primary disease that can be treated only by transplant is the fibrosis. It is due to the fibrosis that leukemia/lymphoma cells are appearing and that the white cells are evidencing disease as well as the platelets and the hemoglobin, i.e., the leukemia/lymphoma are functionally symptoms of the primary disease: fibrosis. If I receive a successful bone marrow transplant, it will cure all the diseases of my marrow in one sweep. There are other treatment options to address the leukemia and lymphoma. The one drug which might have helped me with the platelets and fibrosis was developed a few years ago by a physician at Mayo Clinic in Jacksonville. When personally consulted by phone about using that drug to treat my marrow, the physician said that he did not recommend my being treated with this drug, that he did not think it would help me in any way at this time. The fibrosis has scoured my bone marrow. I am a candidate for a donor transplant because the genetic structure of my marrow is diseased. I have no marrow cells of any kind that are consistently capable of producing healthy marrow and healthy blood cells.

Memo from Duke Bone Marrow Transplant physician

2008-08-05T12:40:00.003-04:00

The good doctor at Duke has written a clinical note. Oddly, it went first to the insurance people and not to Asheville or Wake Forest. However, after about twenty phone calls, I believe I've routed the note to the people at Wake for their looksee. From my incomplete knowledge of this most important memo, it seems that the doctor at Duke is agreeing with the team at Wake Forest: Jane needs a transplant (no argument there) and she needs it now (timing being the uppermost question). Will this be enough to punch through the brick wall of the insurance reviewers? Only time will tell. Yet there is finally some connection and agreement between Wake Forest and Duke, both transplant centers. Only time will tell. There is one appeal left in this round with the insurance company. Only time will tell.

Vacation from Myself

2008-08-05T12:29:00.002-04:00

Tuesday, August, 5, 2008 I have returned from a time apart. I went far away from my home, my cat, my struggles, my efforts at discernment. It was time for a vacation from myself as I had become. I was thinking like a sick person, fearing as a sick person, acting like a sick person. I needed more than anything to remember who I am in this moment. And who I'm not. I'm not the product of pathology reports. I'm not the object of medical decisions. I'm not a bone between the two dogs of the medical system and the insurance system. I'm not many of the identities thrust at and on me in these last several months. So, I took days away to remember, to test my physical strength a bit, to quiet my mind and gentle my anxieties. It took some days to restore the connection with self. Prayer, beauty, new sights, new people. The refreshment of remembering who I am and not who I've been described to be by even the best of physicians. "Sick." "Not sick enough." Like the thousands of patients I've been privledged to meet, I took my turn at remembering: I am not diseases. I am who I am in this precious moment.

July 14th

2008-07-03T17:01:00.002-04:00

July 3, 2008 My memory has been tugging at the date, July 14, since yesterday when Dr. Jackson's office told me that I had an appointment at Duke University Medical Center that day for a second opinion. Finally this morning I remembered. July 14th is Bastille Day in France. A remembrance of the storming of the Bastille during the French Revolution. What an image. Violence, full of fury, a desparate act of despair and hope. Dramatic? Yes. Yet what part of these past six months and this process have not been filled with the component dramas of the human condition? Filled with hope. And filled with a sadness near despair. There have been strategies blown apart, plans pushed aside, justice questioned. Personal drama against the backdrop of a flawed system and the solidarity of love. So, we move on.

Moving On

2008-07-02T22:05:00.003-04:00

July 2, 2008 This morning I woke at 5:45 a.m., fortified myself with bacon and eggs at Cracker Barrel and by 8:15 I had parked myself at Dr. Jackson's office door, determined to leave with a referral for a second opinion on my situation. When they told me he was still on vacation and wouldn't return until the 15th, my heart sank. But I'm learning the gentle art of squeaking like a slightly annoying but still serviceable wheel. Soon I'd had a blood count and was in possession of a referral via Dr. Jackson's PA, Margaret. So, on Monday, July 14 I'll go to Duke Medical Center, Bone Transplant Center for a consult with Dr. Rizzieri, called "the best of the best at Duke". Doing something and taking some action has definitely helped my general well being. Also my blessed bone marrow continues to make hemaglobin in the face of disease and general mess. And the help of lovely people at Dr. Jackson's office. And the prayers and kind wishes. All to the good.

The Next Step

2008-07-01T22:19:00.002-04:00

Tuesday, July 1, 2008 Amy Staton, the PR and insurance person at Givens Estates, called tonight. Here is the next step. Tomorrow morning (Wednesday) at first light I call Dr. Jackson, my hematologist/oncologist here in Asheville, and ask him to send me for a second opinion. This could be to Duke or Chapel Hill. Or even Emory. But it will be a transplant center who does the donor transplant with reduced intensity chemotherapy. I'll take my file (there's so much paperwork now I'll probably need a U-Haul Truck) and myself to this second opinion. If the second opinion speaks agreement with Dr. Hurd at Wake Forest, then I'm almost certainly a go for transplant. If the second opinion says I need to wait, that's probably what will happen. So, we're in motion again. What a journey! If, when all this is over and I'm healthy again, I EVER complain about the normal, the daily round of stuff, please take my hand, write me on my web site, or call and say firmly, "Jane, let's take a moment and remember 2008." I will immediately return to a place of gratitude for normalcy, for summertime, all the time, mountains filled-with-friendship realities. Regular days filled with friends, good work, with a big black cat and my home. Normal. Regular. For tonight the edge of surreal feels slightly less sharp.

Reflections on a Nightmare

2008-06-28T10:43:00.002-04:00

On Friday, June 27, 2008 just after lunch the insurance case manager phoned me to say that the appeal had been denied, that frankly "Jane, you're just not sick enough". She then read parts of the report in which the physician reviewer for the insurance had written that until I need transfusions for anemia, am symptomatic for full blown acute leukemia, plus a few other less than lovely things, the "risk" of a transplant outweighs the benefit. I phoned Wake Forest where the RN case manager hadn't picked up the message from the insurance. She was obviously deflated. The team at Wake Forest will regroup on Monday, June 30. In the meantime I've talked with medical people in Asheville, asking for further suggestions and input. For a reflection on some of the above, please return to my website/transplant.

First of Two Written Appeals

2008-06-28T10:38:00.002-04:00

I received a phone call from the insurance RN case manager on Wednesday, June 25, 2008, saying that she had received the first appeal letter from Wake Forest, that it was considerably more in depth than the original submission, that Dr. Hurd had addressed point by point the issues raised in the original denial for transplant. The same day the RN case manager from Wake wrote an email to me, calling the letter grounds "for optimism and hope". I repacked my bag and reorganized the books and movies to take to Baptist Hospital on the campus of Wake Forest for the six week stay.

High Summer

2008-06-22T13:49:00.002-04:00

As of today, June 22, 2008 the bone marrow transplant team at Wake Forest has not submitted the first written appeal. I appreciate their desire to be thorough. However time seems to be slipping through my fingers. To hurry would be to court mistakes. To linger is stress upon stress. Today is high summer. The moon is beginning to wane. There is a hope of rain. Quote from KungFu Panda: Yesterday is history. Tomorrow is mystery. Today is a gift. That's why it's called the present.

Diagnoses

2008-06-17T20:25:00.005-04:00

January 15, 2008 Diagnoses: fibrosis of the bone marrow, i.e., scar tissue in my bones; cobwebs inpeding production of hemaglobin; thrombositosis, i.e., too many platelets. acute lymphocytic leukemia--early stage; small lymphocytic lymphoma--early stage ; Further test: PET scan; Treatment option: bone marrow transplant.

The Day the World Stopped being According to Jane

2008-06-17T20:20:00.008-04:00

May 22, 2008 My journey to wholeness and complete health has begun, not with a bang but a whimper. After months of preparation both by Wake Forest/Baptist Medical Center and myself and my support system, the physician reviewer of the insurance company has denied final approval for a bone marrow transplant. A follow up phone call one week later between the Wake Forest physician and the insurance reviewer resulted in an upholding of the denial.