Despite the rumors, the intrepid walkers are still here and still active. I have not written an update since day +136. My medical condition has not changed since that date, and I have been out walking only a few times since then. I met with my local oncologist on Monday, July 11. He did an examination and ordered a few blood tests. I have not heard any of the results from the blood tests.
A nurse called from Mayo Clinic yesterday, and advised me that my next appointment for a checkup will be on August 11. This means we will leave the Copper Country on Wednesday, August 10 to return, hopefully, on August 12. He promised that all of the tests would be done on one day.
The tests done at the clinic are primarily blood tests, looking at my blood counts, liver functions, and kidney functions. They also do a pulmonary function test. The pulmonary function test is not fun -- I have to sit inside a glass cabinet and breathe into a machine -- inhaling and exhaling to my utmost maximum limits. Then they checked my oxygen level while I climb up and down a stair step for 3 minutes. Stairs are my enemies…
An invisible illness
Three or four months ago, one could tell I was quite ill simply by looking at me. I looked like death warmed over. Now, except for when I'm wearing the Darth mask, it's pretty tough to tell that anything is wrong. The rashes gone and the hair has returned -- even my eyebrows, eyelashes, and mustache have all fully returned. In fact, I need a haircut as I am beginning to grow a senior mullet…
However, major problems still persist though they be invisible. I have to wear the mask in public and around children as well as anywhere that construction or renovations are taking place. I also have to wear the mask when we're cleaning or mowing grass, etc. This is because I have no resistance to infection and my immune system is that of a newborn. I have to wait at least a year in after my transplant to begin inoculations for childhood illnesses like measles, mumps, and chicken pox. I am even supposed to avoid going into my own basement, because of potential exposure two molds and mildew.
The tired one
My chief complaint, however, remains the persistent fatigue problem. This is partially due to something called hemolytic anemia. My hemoglobin level continues to decrease and we're not certain why that is happening. The last information I have is that my hemoglobin level remains at 8.8. This is low, but not low enough to require a transfusion yet. Most likely, the reduction in hemoglobin is due to some of the medications I take every day.
In my previous experience, as I work during the day I grow gradually more tired as I work along. In my current situation, I start out pretty much in low gear and continue at approximately the same level until suddenly the batteries are dead. In my conversations with my doctors, and in my research, the general consensus is that fatigue remains an ongoing problem and will persist indefinitely. I guess it's just part of the package. As one person stated on a DVD provided via Mail Clinic, " Get used to the idea of afternoon naps."
Is it paranoia, it's something really is out to get you? Marian usually does a full body check at least once, if not twice each day. We are constantly on the lookout for any changes that might indicate a rash, infection, or other problem. We question every cough, consider every sneeze, and monitor every bruise because even minor problems become major catastrophes in quick order. It's the nature of the illness, I guess.
Still, we are doing well, following the protocols, and praying for the best. Thank you to all who have been praying for us and sending good thoughts our way.
God bless and good afternoon,