Today, Sunday, is the first (and only looking into the near future) where there is nothing scheduled. We have a few goals. I want to do some normal things, washing dishes, cooking, and a short hike. We want to rest (the real purpose of Sundays). I want to catch up on reading for fun and research (into my disease). Family and friends ask “How are you doing” so I will update in bullet points below:
- Last night is the first night both Denise and I had at least 7 hours sleep in a month. Denise says she now feels “well-rested” for the first time since this nightmare started.
- My edema is completely gone. I had edema, from renal failure, up to my knees. My own kidneys have done the job day by day of removing fluid (we removed no fluid via dialysis per the plan) on their own. So this means my kidneys are working well in fluid removal and they are improving each day. For the first time in three weeks I have some real hope that I will get off dialysis. We don’t know how they are doing in filtering out the toxins (creatinine) until labs (drawn yesterday) return.
- My bad chemo side effects went away after 24 hours.
- Right now, I feel quite normal, except for weakness and fatigue. My red blood cells were about 3/4 normal on the last test (related to renal failure) and chemo has a side effect of fatigue. I got up this morning and did my chores (dish washing, cooking, etc.) and now after 2 hours I’m totally exhausted. I still must shower. I hope to rest so I can drive my Defender to the beach and take that short hike. When my exhaustion improves, I want to go back to work part time.
- I still have neurological problems from living in unknown renal failure for a month. My only symptom, before I was in crisis, was twitching and fatigue. I account fatigue for being “out of shape” and was pushing myself harder and harder until the crisis happened (preceded by vomiting and diarrhea). So, my neurological symptoms are hard to describe except for twitching, myoclonus (jerking of large muscle groups) and general weakness. I hope that these improve.
- Because this disease is still confusing to some people (non-medical people, but even the brightest minds in science don’t full grasp this complex disease) I will repeat some things. My primary disease is Multiple Myleoma (MM). It is a cancer of the bone marrow. It is incurable (as of this date) and only manageable. Left alone it is always fatal. The goal is to suppress it long enough that you die from something else (normal things). Often the first symptom of MM is renal failure because when it starts producing huge amounts of a plasma (clear-ish part of blood) protein it gums up the kidneys. No, I’m not a “cancer survivor” and will never be, unless there is a new cure that comes to the market that we don’t have at this time. I AM a survivor of a very serious and near fatal renal failure crisis. For that, we are deeply grateful.
I have talked about this “tension” I have to ramble here. I created this spot for friends and family to check into to find out how we are doing. I am a writer at heart. It was my dream profession that I never fulfilled. So, I’ve decided to rather constantly fight this urge to “think-out-loud” by rambling, that I will simply divide this up into “UPDATE” and “RAMBLINGS.” I am not so narcissistic to think that most people give a rat’s-ass about my ramblings and only want to know how we are doing. I also realize that my ramblings are mostly for my own benefit and may have an audience of zero. So, I will create a line of demarcation between when I go down the rabbit hole of personal thoughts verses the basic updates.
I’ve asked myself “What voice do I have?” in this matter. Again, I have no desire to create a “Mike’s Journey with Cancer” blog. Others have done that much better than I could. In some ways I’m not a good writer because I write fast, I don’t have time to proof-read and typos can abound. I am also dyslexic, seriously. It has been my Achilles hill throughout my life. It manifest itself by my inability to pronounce things correctly (the standing joke with my kids), memorize numbers, or even words. You will see me flip words and use the wrong homophones (eg. “I looked for it, but it wasn’t their”). It was one reason I didn’t become a physician but a PA because I struggled so hard with memorization of terms (eg. in anatomy).
To digress a bit, people scratch their heads and ask, “If you are dyslexic, why in the hell would you want to be a writer?” I answer, the same reason that some people born without arms want to play the guitar. Sometimes, they do it damn well with their feet. They have to work harder to get there, but they do it in spite of their disability.
However, I do have some gift in creative writing. I remember my “creative writing” professor in college asking to talk to me after we had to create a short-story. He told me that it was the hardest paper he ever had to grade. He said, “The grammar, spelling, and the syntax, in places was appalling. So appalling that a ‘F’ was clearly the right choice.” However, he said, “The story itself was brilliant, maybe the best he has ever seen from a Freshmen. For that, you get a clear A+.”
I don’t want to talk about the day-to-day stuff of dealing with cancer, medical visits, fears, prayers and etc. If I have a voice, it is because I am deeply curious and always have been. I am curious about the deep, very deep and hard questions and thoughts. I have never been shy about asking the hard, “taboo” questions. If I bring something to the table, this will be it.
I often digress and I will again to tell a story about this intense curiosity that drives me.
In 2006, I had the privilege, along with eleven other American medical providers, to NW Pakistan to help with a horrible earthquake, which killed almost 90,000 people. I love that part of the world. I adore those people. I had hitchhiked through that same region in 1981. During that time, they loved Americans. However, when I went in 2006, it was very different. That is Taliban country and is where much of the Afghan Taliban forces are held up, between their fighting in Afghanistan. But even the general population is now quite anti-American (some people ask why I would want to help these “bad” people, simply, we were created by the same God). We actually spent one night directly across the street from the compound in Abbottabad where Osama bin Laden was hiding out at the time. I remember it well and never had a clue he was only a stone’s throw away.
We were warned and debriefed how dangerous our trip would be. We had body guards (ex-Pakistani army people) and even some of our doctors (Pakistani doctors) had pistols in their belts as they saw patients. It was very precarious. Then, to throw a match onto the tinderbox, George Bush decided to have a surprise visit to Islamabad while we were there. Suddenly, groups of Taliban came in to kill us all. Our bodyguards tried to lock up all us Americans in a shipping container to protect us (I, alone “escaped” and went into the village to sleep in tents with the locals than risking dying with the Americans who felt safer in the shipping container, but that’s another story).
A couple of days later, after things calmed down a bit, I somehow found myself alone (only American) left in camp. We were taking turns taking “expeditions” into different villages to look for survivors. On that day, the eleven other providers were out on different expeditions. So, I and a couple of Pakistani doctors were left in camp. At lunch, over a dinner of curry and lamb, I looked around and realized that I was sitting, surrounded by a group of pro-Taliban men, some of whom I assumed were actual Taliban. I also assume they were back in Afghanistan fighting the Americans at times. While they were staring at me, probably mulling over in their minds my value as a hostage, my mind was overflowing with intense curiosity. I looked at the Pakistani doctor, who spoke both English and Pashto, and said, “I have some questions for these men.” We spent the next hours in a very emotional discussion and intense debate about things such as 9-11, the morality of Osama bin Laden, the difference between their view of God, Jesus and Mohammed. I had violated every warning about what NOT to talk about, but my curiosity was killing me and to me it was worth the risk of my life to find some answers.
My whole point of this is to story is to try to illustrate what I may bring to the table, if it is one thing, I don’t mind taking risks to ask hard questions.