Don't kill the messenger!

BOX SCORE	04/28/24
Element	Current	Std. Range	Trend
Hemoglobin	8.3	13-17	^
Platelets	74	140-375	^
ANC	1770	1800-8300	^

Yesterday we met again with Dr. Meyers at OHSU. We also met a number of other people who will be an integral part of our lives for at least the duration of my hospital stay: Theresa, the MA who drew a blood sample and took my vital signs; Christie, the RN who will be my case manager; Kelli, who is the donor coordinator for OHSU; and Halli, who is the coordinator for the clinical trial I will be participating in to help the medical staff zero in on the best dosage of immune-suppressive medication to keep Graft versus Host Disease (GVHD) in check after transplant. What a wonderful crew we will be working with. Meeting them helped to allay some of the fears of the unknown that we have been dealing with.

The day began at 8:00am with the insertion of a new PICC line in my right arm. I already had one in my left arm, but it had only one tube for delivering medications and withdrawing blood samples. The new one has two tubes, which will be required during the chemotherapy leading up to my bone marrow transplant and afterward for IV medication delivery. This is the fourth PICC line I have had. I won't go into the details of why I have had that many, except to say that at different times, the medicos have had different needs. The insertion went very smoothly. 

There was time between that first appointment, and our consultation with Dr. Meyers, so we went for a tour of what will soon be our new environs. We located the laundromat recommended by Matt, our landlord at Marquam Manor, as well as the Fred Meyer shopping center. Now, I attended OHSU Dental School in the late '60s and early '70s. Little did I know that at the same time, my sweet Jill was attending Lewis and Clark College, perhaps a 15 minute drive away. We were both amazed at how much the area between our two alma maters, where the services we were checking out are located, has changed in a mere 50+ years. After our tour, we returned to the Knight Cancer Center, found a space in the very full parking lot, and had a bit of a car picnic. We had eaten breakfast before 6:00am, in order to make it to my PICC appointment. 

Dr. Meyers went over the treatment plan in great detail. This treatment will NOT be a picnic. I have created a calendar for your perusal. I thought it might help those of you who are our faithful prayer warriors to have more detailed information for directing your prayers.

			May 1	2          T-6 Admission	3           T-5 Fludarabine Cyclophospha -mide Chemo	4          T-4 Fludarabine Cyclophospha -mide Chemo
5          T-3 Fludarabine Cyclophospha -mide Chemo	6          T-2 Fludarabine Cyclophospha -mide Chemo	7           T-1 Full Body X-ray radiation	8           T-0 TRANSPLANT Peripheral Stem Cells. “Like a transfusion.”	9         T+1 Stem cells + immune cells growing. Poss. Fever & aches	10       T+2 Stem cells + immune cells growing. Poss. Fever & aches	11      T+3 Cyclophospha -mide higher dose Potential bladder probs.
12       T+4 Cyclophospha -mide higher dose	13       T+5 Start Filgrastim shots-stimulate lymphocytes, suppress immune system	14       T+6 Also on T+5 MMF pill 3X day → T+35 immune suppression	15       T+7 Also on T+5 start Tacrolimus pill 2X day for immune suppression	16       T+8 Continue Tacrolimus → T+100. Can cause electro-lyte probs.	17       T+9	18    T+10
19     T+11	20     T+12	21     T+13	22     T+14 Discharge	23     T+15	24     T+16	25    T+17
26     T+18	27     T+19	28     T+20	29     T+21	30     T+22	31     T+23	T+100 Begin tapering Tacrolimus on T+100 if no GVHD.

Let me clarify some of the notations on the calendar. In the upper left corner of each box is the day of the month. In the upper right corner is a reference number that relates to the day the transplant will happen. So, Transplant day is Day 0. Each day before Day 0 has a negative number, thus T-1 is one day before transplant, T-2 is two days before transplant, and so on. Likewise, each day following transplant has a positive number, thus T+1, T+2, and so on. The notations in some of the daily boxes are intended to help you follow what is expected to happen on each of those days. 

Don't worry about the big words that are simply the names of the chemotherapy drugs and immune-suppressive drugs I will be receiving before and after the transplant. Now, you may have noticed a couple of things on the calendar that are confusing. Welcome to my chemo brain, exacerbated by my ineptitude with word processing. First, on T+6 and T+7 the notes begin with "Also on T+5." This is my way of saying all of these things begin on T+5 and continue for several days afterward. Also, on the day after May 31st,  T+23, the next day is labeled T+100 (August 16th), and the note reads, "Begin tapering Tacrolimus on T+100 if no GVHD." Rather than stretch out the calendar to the full 100 days we expect to be in Portland, I chose to put this note at the end of the information I have been able to supply about the days of my hospital stay. 

So, let's back up a moment. Graft Versus Host Disease (GVHD), is one of the biggest problems with Allogeneic (from an unrelated donor) Bone Marrow Transplant (BMT). It is essentially a process whereby the new immune system that is transplanted into the recipient looks around and says to itself, "Wait a minute, these tissues are not me. They must represent an alien and dangerous infection. I will therefore, do my job and kill them." That response is good, if the graft cells are attacking the leukemia cells, and even if they are removing remaining host marrow cells. Part of the rationale for BMT is that the transplanted stem cells create a new immune system that is able to destroy the faulty cells in the host, including the cancer cells and the faulty marrow cells that create them. 

But enough is enough. That's why the GVHD needs to be controlled until the new immune system is comfortable with the host cells and realizes it doesn't need to attack every cell in the host. So, back to our note on T+100, "Begin tapering Tacrolimus on T+100 if no GVHD." This simply means that around day T+100 the need for immune-suppression has diminished enough that fewer drugs are needed to prevent GVHD. Dr. Meyers indicated that around six months (T+180) is the earliest that it might be possible to eliminate the Tacrolimus completely. 

Here are a few of the side effects of Tacrolimus: 1) changes in blood Potassium, 2) decrease in blood Magnesium, 3) kidney problems, 4) "Foggy" (Dr. Meyers' word) brain, 5) increased blood pressure. Because of these problems, it is necessary to check these things daily via a blood test and monitoring vital signs. This is another reason we will need to be near OHSU for 100 days -- daily or at least several-times- per-week blood tests. 

At T+30, I will need to have another Bone Marrow Biopsy (BMBx) to check on the progress of the new immune system toward destroying the unwanted cells in the bone marrow and leaving the desirable cells. The ultimate goal is to have 100% donor cells replacing both my immune cells and my bone marrow cells. By way of checking on that, another BMBx will be done around T+100. Along the way, I will also need to have blood tests to look for signs of virus reactivation. You see, with the new immune system, I may lose my immunity to things like chicken pox (herpes zoster virus, which in adults can cause shingles) and cold sores (herpes simplex virus) not to mention other viral infections. Eventually, I will need re-vaccination against a lot of viral and bacterial infections. In the meantime, I will be medicated with anti-viral and anti-biotic drugs to reduce the likelihood of such infections. 

So, there you have it. Bone marrow transplant treatment plan in a nutshell. There will be a quiz next period, but don't fret. It will be open book!! 

As I was reviewing Dr. Meyers' notes and endeavoring to turn them into something you might be able to follow, without first going to medical school, I was reminded again of Psalm 139:13-14:

For you formed my inward parts;
    you knitted me together in my mother's womb.
¹⁴ I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.

To think that our Creator made such an incredible contraption as the human body, which contains billions of cells that work in concert to make human life possible is amazing to me. But to realize that He has also revealed to medical science the possibilities for repairing damage done to one person, through injury or disease, by borrowing tissues or organs from another, selfless person who voluntarily gives of himself to provide them, speaks volumes about our loving Creator, not to mention those among His children who know the true meaning of "Love your neighbor as yourself."