Getting Real

Tuesday, 9/25, I had a series of tests to evaluate if my core systems will be able to withstand a stem cell transplant.  The tests included a pulmonary function test, an echo cardiogram, an EKG, and a chest x-ray.  The results were all sent to Dr Levine for him to evaluate, so I have no idea if I passed the tests.

We also spoke with the social worker and Denise Cummings, the nurse coordinator who will directly supervise my stem cell transplant.  We learned that the schedule is relatively set.  If complications are experienced, the timetable may be extended.  But if for example the time of stem cell collection is short, the date to start the transplant will not be moved up.

Here is the projected schedule:
Stem Cell Collection I report for an overnight stay on Wednesday, 10/3.  I will receive a dose of Cyclophosphamide, which has a brand name of Cytoxan.  It is a chemotherapy drug that creates its effects by interfering with the DNA of fast-dividing cells.  It will have the standard chemo side effects, but it will not be totally debilitating because the dose is relatively mild.

From 10/5 to 10/15 I will self-administer injections of Neupogen.  Neupogen causes the stem cells to migrate into the blood so that they can be collected without having to go into the bone marrow.

10/15 – 10/19 is reserved for collecting my stem cells.  They expect it will take just 1 or 2 days, but complications can extend the time of collection.

Stem Cell Transplant I will be admitted to the hospital on Friday, 10/26 for the actual Stem Cell Transplant (SCT).  You stay in an isolation chamber in the hospital.  Guests are permitted, but not encouraged.  They have to wear masks, and they cannot eat or use the patient’s bathroom.  The expected stay is 3-5 weeks.  You are released when your blood counts are sufficiently recovered so that you can survive outside of the isolation chamber.

The first step is to receive 2 days of very aggressive chemotherapy.  The drug in this case is Melphalan.  Like Cytoxan, it creates its effects by interfering with the DNA of fast-dividing cells.  Cancer cells have lost the control that tells them when to stop dividing.  Unfortunately, this class of chemo-therapy attacks all fast-dividing cells, whether they are cancerous or normal.  The normal cells it affects include hair cells, the bone marrow, and mucous membrane cells.  The dose of Melphalan is fairly high, so you lose your hair, the bone marrow is virtually wiped out, and your entire gastrointestinal tract is thrown for a loop.

On Tuesday, 10/30, they will reinfuse my stem cells.  The stem cells take up to a week to establish themselves in the bone marrow and begin to produce blood cells.  I will receive all sorts of medications to combat the side effects of the Melphalan.  They will put me on antibiotics to reduce the chance of infection, but mainly they will try to keep me from being exposed to infection.

Post SCT      Sometime between 11/16 and 11/30 they will decide that my blood counts are high enough that I can leave the hospital.  For the next 1-2 weeks they want you to be in a sterile environment, isolated from crowds or people who may have an infection, and close enough to the hospital that you can come in within 30 minutes.  That is because if you get an infection, your immune system is still so weak that the infection will take over your body quickly.  Also, you need to come into the hospital each day for blood tests and treatments for side-effects.  You are supposed to have someone with you 24-hours per day and you are not allowed to drive yourself to the hospital.  Apartments across the street are available, or you can stay with someone you know close to the hospital.  In our case we are choosing to have me stay with Brian and Bridget in Jamaica Plain.  They have a 3rd floor bedroom and bathroom that will allow me to be quite isolated from anything going on in the rest of the house.  They will provide companionship during the day and possibly transportation to the hospital, particularly because Bridget goes there 3 days per week.  Should an emergency arise, if Brian is not able to drive me, we can call a cab for the ride to the hospital.

Bridget points out that both she and Elizabeth, who lives with them, work in hospitals, so they are around germs all day long.  Therefore, they could be vectors of infection.  I have asked the medical team if that would be a reason to rule out staying in Jamaica Plain.  So far, no answer.

Home at Last Sometime after I am released to the immediate vicinity of the hospital, my blood counts will rise to the level that I can return home.  I will still need to shun anybody who has a cold, anybody who has recently been inoculated with a live virus, and crowds in general.  But I will no longer be required to come into the hospital every day, and I will be able to drive myself when I do have an appointment at the hospital.  We will set up the second bathroom, Andrew’s old bedroom, and my office as my living quarters.  We will close off the rest of the house so that Barbie can continue to have piano students come for lessons.  She will insist that anybody who is sick skip their lesson, and the parents and siblings will be encouraged to stay away if they are at all ill.

A side effect of all this is that Thanksgiving and Christmas this year will be a private affair for me.  Certainly no crowds for Thanksgiving, and probably not for Christmas.  A reasonable goal is to be recovered well enough to participate in the welcoming of our new grandchildren due 2 weeks apart in January.