Thursday, September 01, 2005
Duke UMC Consultation
Rachelle and I successfully completed another consultation yesterday at Duke's University Medical Center with Dr. Mitchell Horwitz, who is a part of their Cellular Therapy department (no, it's not for folks who overuse their cellular telephones. Think Stem Cell Transplants).
I've been feeling anxious to begin my treatment regimen after visiting Dr. Foss at Yale. We had discussed several options and had concluded on topical Targretin and Photopheresis (see other posts below for details on these treatments). So when Dr. Horwitz wanted to "consult" with me, I just wanted him to hook me up to the bloody machine and get this treatment started. I can't get better until I get treated!
But then we met with Dr. Horwitz.
People who normally see him are cancer patients in dire straights. Stem cell transplants are often last resorts, are complicated procedures and quite risky. Those transplants essentially discard your old immune system, which failed to stop the spread of cancer, and replace it with someone else's. Photopheresis is a complementary treatment with stem cell transplants. To be clear, I am not having a stem cell transplant, only photophereis.
Sidebar: As an aside here, if you give blood to the Red Cross, they often now ask if you will allow your blood to be tested and registered in the National Bone Marrow registry, which provides matches for patients who see Dr. H. If you don't give blood, think about it.
So our consultation involved 1) the Patient coordinator (think paperwork), 2) the Social Worker (counselor and can help with physical needs, such as housing, if needed), 3) the Duke Fellow, 4) Dr. Horwitz and 5) Nurse Lisa. The process was fairly efficient, with not a lot of downtime between conversations, but it still took 3+ hours.
However, after seeing the really sick people in this unit, I understand why each of the people we met with are important and how this "team" was compiled to holistically care for the patient (albeit w/o a spiritual dynamic). Indeed, I didn't feel rushed. Dr. H didn't just zip in and out...he actually gave us a tour of the facility! I better understand what is happening and why. And I was reminded of God's mercy in that my CTCL was caught early and is treatable.
So what happens now? I immediately start applying the Targretin daily. The Photopheresis will begin in 2-4 weeks (either the week before ASM's tonsilectomy, which is on Sept 21, or the week after). The treatments will be done at Duke (they're the closest ones with the "machine") twice a month for 2 days. The treatments take about 4 hours each. After 3 months of Targretin plus Photopheresis, I will (likely) travel back to Yale for evaluation. If progress is being made, then I'll continue treatments. If not, we evaluate other options, which are still many.
Please pray for:
1) my CTCL responds to the treatments, that it goes into full remission.
2) continued strength and wisdom as each member of my family has health concerns - CTCL, Rachelle's pregnancy (this is a good thing, of course), ASM's tonsilectomy.
God has been faithful to us and continues to shower us with blessings. In fact, just this morning I received a call from my insurance company. "Oh no," I thought. But they wanted to tell me of that my travel and lodging to Duke is covered. Ha.
I've been feeling anxious to begin my treatment regimen after visiting Dr. Foss at Yale. We had discussed several options and had concluded on topical Targretin and Photopheresis (see other posts below for details on these treatments). So when Dr. Horwitz wanted to "consult" with me, I just wanted him to hook me up to the bloody machine and get this treatment started. I can't get better until I get treated!
But then we met with Dr. Horwitz.
People who normally see him are cancer patients in dire straights. Stem cell transplants are often last resorts, are complicated procedures and quite risky. Those transplants essentially discard your old immune system, which failed to stop the spread of cancer, and replace it with someone else's. Photopheresis is a complementary treatment with stem cell transplants. To be clear, I am not having a stem cell transplant, only photophereis.
Sidebar: As an aside here, if you give blood to the Red Cross, they often now ask if you will allow your blood to be tested and registered in the National Bone Marrow registry, which provides matches for patients who see Dr. H. If you don't give blood, think about it.
So our consultation involved 1) the Patient coordinator (think paperwork), 2) the Social Worker (counselor and can help with physical needs, such as housing, if needed), 3) the Duke Fellow, 4) Dr. Horwitz and 5) Nurse Lisa. The process was fairly efficient, with not a lot of downtime between conversations, but it still took 3+ hours.
However, after seeing the really sick people in this unit, I understand why each of the people we met with are important and how this "team" was compiled to holistically care for the patient (albeit w/o a spiritual dynamic). Indeed, I didn't feel rushed. Dr. H didn't just zip in and out...he actually gave us a tour of the facility! I better understand what is happening and why. And I was reminded of God's mercy in that my CTCL was caught early and is treatable.
So what happens now? I immediately start applying the Targretin daily. The Photopheresis will begin in 2-4 weeks (either the week before ASM's tonsilectomy, which is on Sept 21, or the week after). The treatments will be done at Duke (they're the closest ones with the "machine") twice a month for 2 days. The treatments take about 4 hours each. After 3 months of Targretin plus Photopheresis, I will (likely) travel back to Yale for evaluation. If progress is being made, then I'll continue treatments. If not, we evaluate other options, which are still many.
Please pray for:
1) my CTCL responds to the treatments, that it goes into full remission.
2) continued strength and wisdom as each member of my family has health concerns - CTCL, Rachelle's pregnancy (this is a good thing, of course), ASM's tonsilectomy.
God has been faithful to us and continues to shower us with blessings. In fact, just this morning I received a call from my insurance company. "Oh no," I thought. But they wanted to tell me of that my travel and lodging to Duke is covered. Ha.
