Saturday January 12th marked the medical milestone of 100 days after Transplant. Reaching 100 days without serious medical complications indicates that the procedure was generally successful, and is the day on which my immune system should have recovered to the point that I can resume the activities of a “normal” life. For the most part, all of the following paragraphs describe VERY GOOD news. The Bone Marrow Transplant was highly successful; this week’s blood work indicates that the disease is in even further remission than when tested only 3 weeks ago; and the research team believes that I can sustain this momentum in maintenance mode for many years.
WHAT MAINTENANCE MEANS (version 2)
Now that I am “in maintenance” I am discovering that this is just as disruptive as the Chemotherapy cycles were months ago. There are lots of pills to take every day: some before food, some with food, some after food, and some related to when I took other pills. Still a very complicated pill-popping schedule.
There are still tests, procedures and clinic visits: Monday this week was lab work, a 24 hour urine analysis, a pulmonary function test (exact same results as pre-Transplant – yippee!), a nuclear medicine MUGA cardiac analysis (66% cardiac function after Transplant – a very good result), Wednesday included a Pentamidine breathing treatment (prevent pneumonia side effect of chemotherapy) and a 120-minute Pamidrinate infusion (strengthen bone walls weakened by the disease).
Wednesday also included two meetings: one with the Transplant Team (Dr. Khaled) and one with the Chemotherapy team (Dr. Jakubowiak).
• The Transplant Team feels that the procedure was a success and that I am recovering well. Dr. Khaled lifted many of my restrictions: I can drive again, I can shave with a safety razor, I can begin eating most foods (pepper, salads prepared at home (NO restaurant salad bars or buffets!!), eating in restaurants, visiting & limited travel (still wear a mask in large crowds, no international air travel (keep in mind I have no natural immunities to measles, mumps, chicken pox, tetanus, polio… and will not for one year after Transplant), must wear a mask on domestic air flights) .
• The Chometherapy Team expects to see further improvement in my lab results over the next several weeks/months. So even though the transplant is over, the chemicals and replaced stem cells are still battling the disease within my bone marrow, and the team expects me to reach a point of “complete response”. This is indeed good news – predicting that I will remain in maintenance mode for many years.
SIDE EFFECTS
neuropathy – I still have the pain/tingling/numbness in my feet, but it seems to be getting better. I have changed the drugs that we are using to attack it… and we are not sure whether the drugs are responsible for the improvement or the side effect is simply wearing off. I am also not sure how this side effect would be affected by air travel: could I sit still in a cramped airline seat for 4 hours? What do neuropathy feet feel like in a pressurized cabin at 36,000 feet?
bladder / prostate issue – my bladder seems to be getting gladder but it is definitely not functioning as well as it was prior to Transplant. We’re watching this closely and I have future clinic visits scheduled with the urology docs.
Food, eating, weight loss – I am happy to report that my appetite has returned and that I no longer barf at the smell, sight, or sound of food. (hooray!!) I am still underweight, however, at 140 pounds and Dr. Khaled suggested today this is due to the loss of muscle mass and will be regained through (GASP) exercise.
General disposition and chemo brain – Irene reports that I continue to improve and am acting and behaving more like “the old me”. I agree with this assessment, but have found it impossible to focus on, and complete, the projects that I thought I would be working on during my recovery.
TWO MINOR SETBACKS – having a weak immune system
We were able to visit with Irene and my families during the holidays. However, despite special precautions and making sure everybody we met was healthy, I still managed to get a bug somewhere and came down with a cold and sore throat (which I was kind enough to share with Irene). Fortunately, I was able to bounce back without medical intervention and no serious consequences.
As reported above under “side effects”, the bladder/prostate situation had been improving until I came down with a bladder infection last week. We are treating the infection with antibiotics and expect it to clear up this week… then we can resume progress on solving the urinary retention and self-catherization issue.
NEXT STEPS
Once again, I have discovered a gap between reality and my expectations – particularly what it means to be in “chemotherapy maintenance mode”. Looking at the activities of this past week, tracking the confusing pile of 20+ pills I take every day, scheduling the 3 pages of medical tests and clinic visits spread over the next several months – are a lot more work and require more attention than I anticipated.
And I am a geek, a detail person, anal-retentive! How does a normal person handle this? How do old people handle this? (egads)
That’s the latest news from Hamburg.
-larry