Day +17 (5/13): Feeling great. My counts are again above the levels needed to go home, so I will be able to go home tomorrow! This may be my last entry, because tomorrow I have discharge appointments all day and will not be back at the house. Thanks for following!!
Day +16 (5/12): Happy Mother’s Day to all the mothers. Beautiful day here, apparently it is going to hit 80 degrees. I am doing great, and my numbers have reached escape velocity. Both platelets and neutrophils are now above the “go home” criteria. They have to maintain those levels for the next two days and then I can go. Based on scheduling it will either be late Tuesday or early Wednesday that they let me go.
Day +15 (5/11): Feeling fine. I’ve lost quite a bit of hair, but that was expected. The numbers look good today. Platelets are now at 70k, above the required 50k. The neutrophils made a big jump to 290, with the target being 500 or above.
Day +14 (5/10): I am doing well. Nice day today, hope to get out for a walk this afternoon. My counts are improving. The platelets are now close to the go home level required and will presumably hit that mark by tomorrow. Need three days at or above that level to go home. Neutrophils made a good jump but are at about 20% of the level needed to go home. Still hoping to be home by mid next week.
Day +13 (5/9): Feeling fine. Had a nice walk in a local park yesterday afternoon, My counts today are headed in the right direction but not as quickly as I was hoping. My neutrophil count went from 30 yesterday to 40 today. My platelets did go up from 27k to 33k, with a goal of 50k. Still hopeful that I can return home by mid next week.
Day +12 (5/8): Another day of feeling well. Went for a 1.5 mile walk yesterday. My numbers today have a total white blood cell count of 0.5k, and have a neutrophil count of 30 (“go home” goal of 500), and my platelets went down 1 to 27, so basically steady. Hopefully the rate of increase in neutrophils will go up and the platelets will also start to rise.
Day +11 (5/7): I am still feeling fine, eating well. Took a walk in a nearby park yesterday afternoon. My counts are headed the right direction, but very slowly. My white cell count in the last three days has gone from 0.1k, to 0.2k, to 0.3k. My platelet count went up slightly from yesterday, so that is good news. Now we just wait to see how quickly I can make it to the “go Home” goals of 500 neutrophils and 50K platelets.
Day +10 (5/6): Still feeling fine. My counts had a slight bump, possibly not significant, but in the correct direction. Will see what tomorrow shows. If it is the beginning of engraftment, it is slightly ahead of the average, which is Day 12. Beautiful day here today, planning on an outdoor walk this afternoon,
Day +9 (5/5): Feeling fine. Nothing to report today. Just waiting for the engraftment stage to start, which will hopefully happen by mid this week.
Day +8 (5/4): Things are going as well or better than expected. I am still feeling fine, having so far avoided many of the symptoms that can be experienced in this phase. My blood counts are tending as expected. My platelets are low enough today to require a transfusion, which will happen later this afternoon. This is also typical, so still on target. Impatiently awaiting the next phase when my transplanted stem cells start making new blood cells and platelets. Typically, that happens between days 12-16.
Day +7(5/3): Things continue to go well. Platelets dropped to 24k. I am fatigued but able to eat. The intake goals each day are 105g of protein and 80oz of fluid intake, which seems like a lot. I have been meeting those goals so far. They think it is likely I will get febrile sometime over the next week, due to the regeneration phase. That phase officially starts at day 12, but that is just the average. I have not had any hair loss yet, but that’s supposed to happen around day 10, almost two weeks after getting the chemotherapy.
Day +6 (5/2): Still feeling well, a little fatigued. I got a 1.5 mile walk done yesterday in a nearby park. Today is raining, so I am staying put in our rented house. Neutrophil count stayed at zero, and this is expected until early to mid next week. Platelets are now just below 50K. They will transfuse platelets if it goes below 10K. Hemoglobin also low, but above 10, and they will not transfuse unless it gets to 7. Taking my temperature every 4 hours now to pick up on any infection.
Day +5 (5/1): Still feeling fine. This day is the start of the expected “hardest days”. The Kenny Loggin’s song “Danger Zone” is stuck in my head 😊. I went on a 2 mile walk outside yesterday with a good friend and I am eating fine. My counts continue to drop. My neutrophil count is now at 0. It will need to be 500 for three days in a row for me to be considered out of the danger zone. In the meantime, I am essentially a walking Petri dish, with my oral antibiotics being my defense against bacterial infection. Interestingly, Petri dish is used enough that it has its own emoji symbol 🧫, kind of funny. At my appointment today they did say that I won the day 5 doing well award of the patients they were seeing. They expect this phase to last until day 10, when hopefully my stem cells will regenerate new neutrophils,
Day +4 (4/30): Had a spell of nausea late afternoon yesterday, relieved with the medications they gave me. Woke feeling pretty good and have been eating fine today. Counts continue to drop, the ones being followed are all below normal not, but not critically low, Everything is as expected so far,
Day +3 (4/29): Still feeling fine. My blood counts continue to drop but are only slightly below normal.
Day +2 (4/28): Still feeling fine. Platelets dropping but still in normal range, same with neutrophils. No funny stories today...
Day +1 (4/27): I am still feeing normal. Went in for labs and the counts have dropped slightly, only hemoglobin is below normal. The funny story of the day involves the preservative for the frozen stem cells, which were reinfused back into me yesterday. They use DMSO (dimethyl sulfoxaide) to preserve the cells, which is infused and is excreted partially through my breath. Unfortunately, it smells like creamed corn or garlic, and not in a good way. Kathy had to air out her car just after a short ride back to our rental. So after going in for our daily visit we were walking out of the hospital and two people behind us remarked "do you smell creamed corn". Kathy about busted out laughing. This should dissipate over the next day or so.
Day 0 (4/26): 5:30am appointment for transplant day, still feeling normal, counts normal. 8 hours of IV infusion and about 40 minutes to get my stem cells back. I got back to our rented house by 3:30. Feeling fine
Day -1 (4/25): Rest Day - feeling normal, counts normal
Day -2 (4/24): Chemotherapy day
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Autologous Stem Cell Transplant (ASCT) – They collect my own stem cells and then give them back to me 2 days after high dose chemotherapy. I am an outpatient for the entire period unless the situation demands hospitalization. I have to go in everyday for blood counts.
Expectations (average)
Hardest Days: Days +5 thought +10 . Low white blood cell counts increased risk of infection, Low platelet counts increased risk of bleeding. Taking antibiotics, antifungal, and antiviral medications.
Engraftment and Healing: Days +11 though +15 . Things are supposed to start turning around, but this is also the time that hair will fall out.
Return Home: Hopefully in the range of Days +16 though +22
More Information: Autologous Stem Cell Transplant for Multiple Myeloma