UPDATE: Always Something
I had my stem-cell transplant in mid-June. Around July 4th (I know I’ve said this part before) I came down with graft Vs host syndrome with serious abdominal pain, head to toe rash, and profuse diarrhea. Was started on five new daily medications, the cornerstone being a high dose of steroids (after six weeks of therapy, I’m off those medications now and my graft Vs host has not come back, a good thing). However, being on the steroids caused a dormant virus (CMV) start to propagate. A full-blown CMV infection, in someone like me, has a very high mortality rate. I was then started on a new anti-viral medication to treat the CMV. Virtually all the medications that can treat CMV, can harm the kidneys. I was started on the one medication that harms kidneys the least. However, it has one rare side effect of hemolytic anemia. Unfortunately, it has caused this side effect with me. My hemoglobin started to plummet as soon as I started it (dropping by one full point per week). Now I am very anemic and extremely weak. When I first came home from the hospital, I was walking 5 miles a day. Now, I can’t walk from my bedroom to the kitchen without being very short of breath and a heart rate of 120-140. I did walk two miles yesterday with Jerry, but it was like climbing Mount Everest. Tuesday morning, I could not stand without almost passing out. This is very discouraging, and I feel I’m losing ground daily.
The other bad thing, and we think it is related to the anemia, is that I woke up with a severe headache 12 days ago, and it has never gone away. It keeps me awake every night and there is nothing I can take for it. I’m not supposed to take Tylenol, because it could mask a fever and infection. I can’t take anti-inflammatory drugs, because of my kidneys. So, I pack my head in ice packs, hoping I can get an hour or two of sleep when my head becomes a little numb. At least I don’t have the associated symptoms (except of light sensitivity) that my migraine patients have.
I must remain on this antiviral medication for two more weeks, if I can make it. The CMV viral load has come down. We are trying to avoid more transfusions (I had five in Seattle this summer) because with each one, someone with such a compromised immune system as me, is put in danger of an occult infection. This is where I’m at.
Denise is back at work with mixed feelings. She wants to be home with me. I think it is good for Denise’s sanity to get away from me, from not hearing about my constant symptoms and watching me struggle every day. Greta, the Saint Bernard is watching over me.
Ramblings: More Self-Pity
I am certainly not a superstitious person, but if I were, I would believe that some great curse has descended upon my life in the past two years and—while there are good spots now and then—the trend does not seem to be changing. I think it seems so severe to me because, for the previous 62 years, I felt really blessed. I have five healthy children, who have turned out to be fantastic human beings. I have been in very good health without much of a taste of suffering… until now. I remember thinking, before all of this started, that life could not be any better. This previous life juxtaposed against my present life, I’m sure, intensifies the distress.
I do know several facts, for one, the line between venting (what I think I’m doing here) and self-pity is a fine line, easily crossed. I also know that others have suffered far more than me, many in complete silence. I also know that there are limits to human empathy.
My professional calling was to listen to other people’s complaints. I thought I was very empathetic. But now I know that I could never live in some else’s skin, feeling what they feel, nor can I ever hope to communicate what I now feel to others. Suffering isolates you from people, because you start to live in a private world that, unless you are a gifted poet, can never express appropriately. I regret those times that I didn’t listen to the suffering of others more carefully.
My curse seemed to have started with two, unrelated, back to back freak accidents in 2017. One cause a complete tear of my left rotator cuff and the other a partial of my right. The pain was constant and pretty severe from that point forward (I am happy to report that pain has been gone for 3-4 months). In June of 2018 I was at Swedish Hospital, having a shoulder surgical evaluation (both shoulders were deemed “unrepairable”). While I was walking to the surgeon’s office that morning, I had a call from my sisters that my mother had passed away. I had to stuff the grief as deeply as I could for on that day, I was also starting to host a week-long wedding party for my daughter. My next call from my siblings, a few of days later, was to inform me that they were having my mother’s funeral without me. This created tension within my family that I had never experienced before.
The next event was when I flew to Tennessee in October to say goodbye to my mother at her grave on my own terms. It was during that trip I first started to notice some vague symptoms (I would call it malaise), which, in retrospect, I think was the beginning of my cancer.
In December, my vague, mostly neurologic, symptoms intensified. I suspected I had ALS, which I knew was a death sentence. It was about this time I had a call from my brother who reported to me that he was very sick, with his own bone marrow cancer (different than mine, and mine was still undiagnosed) and he was asking me to be a donor of stem cells to him. I said yes; however, I had the intuition that something was very wrong with me. I was on a long wait during the Christmas holidays to get in to see my doctor.
It was January 11th that my doctor ordered some labs, which showed I was in complete renal failure and I ended up at Peace Health by that night, fighting for my life.
Since then, there hasn’t been one hour of one day without some significant symptom plaguing me. It was either pain, diarrhea, nausea, vomiting, weakness, neurological symptoms, or many others, often all at once.
My bother has been in worse shape than me at times and still has not had his stem cell transplant due to very serious complications leading up to it. I’m not sure he can survive what I just went through in his weakened state.
My nephew, David, during this time has also become very seriously ill and his future looks grave. My sister has fought hard to keep her son alive, but she feels like she is losing him now. What makes that situation most frustrating for all of us, is that was preventable or at least treatable at one point.
I am so weary of bad news and suffering that I call it suffering-exhaustion. There comes a time when you start to give up any hope that you will ever feel well again, even for a flighting moment, or that things will go well again. I have begged God for mercy for months to help me turn the corner, to give me a single day of respite and I’m still waiting. I pray too for my brother, my sister and my nephew daily. Mike