|Last trip to Mayo Clinic...|
I hardly know where to begin...it has been awhile since I last posted an update. Folks have been calling, wondering if I am still alive. Yup. I'm still here, and doing quite well. I did not write many updates because my condition has been very stable for the last few weeks.
The intrepid walker has ventured out a few times, but the heat and unrelenting sunshine in the last few weeks have kept me largely indoors. Three of my current medications warn against any prolonged exposure to sunlight (natural or artificial). I also have to be careful about exertion in very hot weather. The loss of hydration by both respiration and perspiration can cause kidney problems unless I constantly replenish the lost liquid.
However, I no longer seem to have any problem with the skin rash and I can venture outside for short periods without my Darth mask, as long as no one is mowing grass, doing construction or renovation, or otherwise stirring up a dust nearby. I also need the mask in large crowds...especially in close quarters (like the grocery store or at church).
I am still dealing with hemolytic anemia, the still inexplicable loss of red blood cells. For three weeks, my hemoglobin stayed at 8.8 (low, but not scary low). Week before last, it dropped to 8.4 (scary low, but no panic). Last week's test showed a hemoglobin level of 8.6 -- an increase all on my own, no change in medications or treatments. We are hoping for another increase this week.
My other numbers have been good. All indicators of liver function have returned to normal levels. Even my creatinen dropped to 1.4 last week...a sign that all the liquids I have been pouring down my throat may be doing something other than sending me to the water closet far too often.
I no longer take prednisone. Consequently, my blood glucose levels returned to normal and not only do I not have to give myself insulin injections, I don't have to test my blood sugar -- things appear to have gone back to normal on that front.
My remaining problems are more like aggravations, really. I get pedal edema (swelling of the feet and ankles) probably due to medications. My saliva tastes awful. This is a very effective prevention against overeating. Whenever I taste something delicious (some few things do taste good to me), my mouth waters and the saliva makes it taste not so good anymore. Eventually, it overwhelms the taste of the food. Yuck!
There remain two long-term legacies from my experience: fatigue and chemo-brain. The fatigue will be with me for a very long time. I remember when I worked, I would gradually grow more tired until I needed rest. Now, I start at a lower level than before and stay at that level until suddenly, the energy is all gone. I go right from semi-energetic to total depletion in seconds. I even take an afternoon nap when possible. I managed to mow my entire yard a few days ago, but I had to take frequent breaks and when I was done, I felt like I needed to sleep for a year.
Describing "chemo-brain" is difficult. Imagine you are the custodian of a massive records center (i.e., the brain) with miles and miles of rows of filing cabinets, filled with millions of files -- all indexed and cross-referenced. Now imagine that someone suddenly reshuffled many of those files in random order, scattering them among the remaining files. You can find many things, but there are holes, lost files, and any search and retrieval takes much longer. Also, filing new information takes longer, with uncertain results. That is "chemo-brain" and I read recently that the damage may be permanent.
In general, I am doing very well. Folks keep telling me that I look good...a new experience for me. My hair has grown back...still mostly silver, but now it is very fine and rather wavy. It used to be rather coarse and straight as a poker. I once again have eyebrows and eye lashes. Even my mustache grew back. However, I also have hair on my knuckles and knees (and other inconvenient places), probably another legacy of the steroids.
Beyond the medical condition
Everything looks normal, but I am constantly reminded by doctors, a dozen medications, and daily protocols that the state of my recovery remains delicate and easily shattered by silly little mistakes or errors. Far too often I leave the house without my mask and have to return for it. I have lost count of the number of times I have grabbed something far too heavy for me now or attempted a task beyond my strength and endurance because I remember doing it before. I am not even supposed to go down into my own basement for fear of contact with mold or mildew that might be crouching in the dark down there, ready to spring out and attack my fledgling immune system. Perhaps the worst is not being able to maintain physical contact with my grandchildren or to be in their presence for long without my Darth mask. If I forget and shake hands with an old friend, I have to reach for hand sanitizer as soon as possible.
I am still living life one day at a time. I still thank God every night for the gift of the day and I ask for the grace of another day tomorrow. I also ask for strength to endure the isolation forced upon me by ongoing paranoia about germs and infection, and by the protocols of self-defense (the mask, no touching).
I will endeavor to post more often and keep everyone up to speed on my progress. I still live with the knowledge that my condition can change in a matter of a few hours, due to chronic GVHD (Graft-versus-Host Disease). However, I hope to have many boring reports of minor improvements in the future.
We head back to Rochester MN on August 10, for a day of tests and consultations on August 11, and then a return trip on August 12. After that visit, I hope to have good news to report.
Thank you all for your continued prayers and good thoughts. God bless and good night.