What Does All This DAY Counting Mean?

After an autologous stem cell transplant (means you donate your own stem cells for the transplant) the first 100 Days after the transplant are when most complications might arise. I have none of my previous immunities to anything and have to be careful not to "catch a bug" during my recovery. My transplant center at the University of Colorado Hospital (UCH) requires that I stay in the area for 100 Days after my transplant which was done on September 13, 2011. This way, if a complication were to occur, I'd be able to return to UCH quickly. After 100 Days, I can return home to Mackay, Idaho. However, recovery of ones immunity after a stem cell transplant generally takes between 6 months to 1 year. At some point, I will have to get my childhood immunization again.

Now to complicate my DAY counting - I may require a 2nd or tandem autologous stem cell transplant in mid-November 2011. I am having a bone marrow biopsy tomorrow, November 2, 2011 and when the results are back in 1 week on November 9, 2011, the decision will be made if a 2nd transplant will be warranted. If I need the 2nd transplant, then my 100 DAY counting would begin anew on the day of the 2nd transplant which begins the counting again with Day 0.

Day 16 - Dr. Han Myint Appointment - September 29 2011

Jan Martin drove me to my first out-patient appointment since the Stem Cell Transplant with Dr. Han Myint on September 29 2011. My appointment was scheduled for 3 PM and they actually had us in an exam room right at 3 PM.

However, we sat and sat in the exam room for more than hour before Nurse Practitioner Denise came and showed me the lab work results from this morning and asked me a few questions. Denise noted my serum protein and albumin levels and was impressed that Jani had maintained my diet so well since discharge - making sure I was eating adequate levels of protein each day despite my continued nausea. If you look at the values over time chart below, you can see, I never ate enough protein while I was hospitalized with the Protein value ranging between 4.8 and 5.1. Now 2 days post hospital discharge, my protein level still is not in the normal range of 6.4 to 8.3, but much closer at 6.2.

Around 4:30 PM, Dr. Myint came in and said I was doing fine. He decided to give me a Neupogen injection to stimulate my new bone marrow into action since my white blood cell count had dropped from 2.8 on Day 14 to 1.3 on Day 16.

I'm scheduled for a bone marrow biopsy on November 2 2011, just prior to my Day 60 when the decision will be made on whether I will require a tandem (2nd) stem cell transplant. If that bone marrow biopsy shows any abnormal cytogenetic (DNA changes), I will need the tandem transplant. If the cytogenetics are normal and I'm in the top 3 categories of remission, then I would not require the tandem stem cell transplant. If I need the tandem transplant, it would be done right after all of the bone marrow biopsy results are done and finalized. My insurance company, Anthem, has already approved the tandem stem cell transplant.

We were still waiting for the neupogen injection when the nurse poked her head in the room and said they were waiting for insurance approval. Neupogen costs about $250 per one 300 g dose. Not long after, an obviously pregnant nurse came in the room with the neupogen and I asked her if there was a another nurse who could give the injection. The nurse looked so hurt and said, "Yes, there is." I quickly told the pregnant nurse that I had shingles and then she understood. The 2nd nurse came and gave me the injection and I took a Claritin tablet that I brought with me.

Now 5:00 PM, we went downstairs to schedule future appointments. Jan Martin waited at the desk with the scheduler and I went through a door to the Apheresis Department which has temporarily moved to the 1st Floor while the new space is being remodeled. Jessica Jones from Apheresis was there and we had a good visit.

With appointments in hand by 5:35 PM, Jan Martin drove us back to The Timbers. I told Jan that if I had to wait all afternoon by myself at the University of Colorado Hospital Outpatient Cancer Clinic - it would have been miserable - but visiting with Jan was wonderful and the 2 1/2 hour appointment didn't seem that LONG~

I collapsed into the bed for a 2 1/2 hour nap. Jan Martin made me mashed potatoes, fried chicken, and canned spinach for dinner and I ate it all - so yummy and loaded with protein.

Day 13 Afternoon Update September 26 2011

My white blood cell count continues the climb upward with 1.9 at 4 PM September 26 2011.

They can finally calculate my absolute neutrophil count (ANC) and it is 1.7 right now. This is all good. So, good - that I will be discharged from the University of Colorado Hospital tomorrow, September 27 2011 - Day 14 since my stem cell transplant.

Jani and I will remain here in Aurora, Colorado at a hotel named The Timbers which is approximately 2.8 miles from the University of Colorado Hospital. This will allow us to be close enough to the hospital for the next 2 weeks to return for frequent blood draws and transfusions as needed.

And most importantly, I will be able to go outside in fresh air for the first time since September 12th. I will have to wear a mask when I'm going in and out of the hospital, but not necessary if I'm walking outside where no people are gathered.

My immune system today is IDENTICAL to that of 13-day-old newborn infant. The stem cell transplant drug melphalan completely destroyed my previous immune system. I now have no immunity to anything including polio, chickenpox, measles, mumps, etc. So, just as you would not take a 13 day old infant into crowds, I must avoid this also. It will take at least 100 days for my immune system to get back to full duty. At some point, I will have to have all of the childhood immunizations again. I will be able to return to Mackay, Idaho just before Christmas 2010 when Day 100 falls.

However, a possiblity exists that I will need a second or also called a tandem stem cell transplant. That decision will be made around Day 66 based on a bone marrow biopsy and blood work to be done on Day 59 or so since Day 60 falls on a Saturday. If I need the tandem stem cell transplant, I would have it immediately after the decision and all of my 100 day counting would begin again on November 21 2011. That would mean I could NOT return to Mackay, Idaho for 100 days or until the end of February 2012.

Let's hope one transplant is all I need - but, if not - I can do it~

Jani leaving with a bunch of my stuff, so we won't have so much to take to The Timbers tomorrow.