As I mentioned before, for the cancer victim, their lives are marked by a sequence of pivotal moments where information will be disclosed that tells them if they are on a path to a horrible death or have some hopes of recovery and many years of living. It is the roller coaster ride from hell. It can start with a first biopsy report, bone scans, or monitoring blood tests. It takes a huge amount of spiritual/emotional effort to live in some level of peace in this life. It has been my experience that those who say, “Don’t worry, just give it to God and he will solve your problems,” are; 1) usually people who have never lived through something like this and, 2) are the first to abandon you when things go south because, your situation of having a bad outcome, does not fit their tidy paradigm of a prosperity gospel.
With those things said, tomorrow is one of those pivotal days. It is shaping up to be a very busy day. I start with early morning labs, then see my oncologist, then see a neurologist (out of town) as a new patient, and return to Anacortes for chemo in the afternoon. What’s at stake are three big things. The first two will be determined by my labs and include my renal function and the level of evil cancer-producing and kidney-killing proteins in my blood. The third issue is if the neurologist can help me.
The last time I got labs, two weeks ago, my tests showed a decline in renal function (after months of some improvement). It was a mixed result as some renal tests were the same or better, but the crucial ones, creatinine and potassium, were elevated. This has put a dark cloud over my life since then, even though I’ve tried hard to deal with it (I had to have a few crying sessions when I’m alone). You see, I have an intense phobia about going back on dialysis and I’m just a mouse’s whisker away from that. When dialysis is combined with my type of cancer it severely limits your lifespan to months. But that isn’t even the worst part. When I was doing dialysis my quality of life was zero. It made me feel horrible 24-7, to the point, that I would rather die now than to return to it. I know that dialysis makes some people feel better, but it is not true in my situation. So, there is a lot at stake in those labs. I pray for a good outcome but try and prepare for the worst. I am doing everything I can possibly do to help my kidneys. My diet is incredibly restrictive now, no animal products including meat or dairy and avoiding the 90% of the vegetables and fruits that have a lot of potassium. I am basically left with oatmeal, soy, and kale and that is no embellishment.
As mentioned, we will also be checking my evil proteins again to see if the chemo is continuing to lower them. I think the last time they were 140. Below 26 is the goal. I started out in January around 3200.
Trying not to be redundant, but clear, my first symptoms, roughly one year ago, were neurologic. I was suspecting that I had ALS and had even told Denise around last Thanksgiving for her to start preparing to be a widow. The neurological symptoms worsened in December and I made an appointment with my family doctor, which was not available until January. I was not in a big rush as I knew that ALS had no hopes of treatment but was a death sentence. Never in my mind did I suspect renal failure as the cause of my neurological symptoms as I had no typical renal failure symptoms.
Once I was diagnosed as being in serious renal failure and was started on dialysis, we expected the neurological symptoms to resolve. They did drop a couple of notches (like I was losing the ability to swallow and that improved), but the original symptom of fasciculations (muscle twitching) has not. It is my dominate symptom now that the anemia has improved as has some of the chemo side effects. I have had a hard time relaying to people, especially my doctors, how serious this twitching is. Some react as if it is funny. It is not. Only at the Cancer Care Alliance did anyone take me seriously. They had me see a psychologist to help with the stress of the constant twitching and we tried magnesium supplements and two different medications. None of them helped.
I don’t know if you have ever had a muscle twitch. About 30% of people have them rarely. But try to imagine having 10-40 muscles twitching, 24-7. If I am walking, I don’t sense it as much. But when I am sitting or tying to sleep, it is very pronounced to the point I feel at times that I’m about to go mad. I cannot count the sleepless nights I’ve had because of the overwhelming twitching. On more than one occasion, if I had had a gun, I think I would have used it on myself in the middle of those nights, just to stop the twitching. That’s why is also so frustrating to have medical providers shrug their shoulders or to try and make some joke about it but to do absolutely nothing to try and help me.
Having worked my entire career in neurology, read all the papers, and having talked to three of my neurologists friends, I realize that maybe nothing can be done to help me. There is very little written about what I have. But there are a few things that could be tried to help if someone would help as it is unethical to write prescriptions for yourself.
I deeply solicit your serious prayers and thoughts for these issues above. I will add that my brother Gary is more ill than me right now with a form of leukemia and is being re-admitted today for intensive chemo.
Then the Good News
I saved the good news to last in this posting because I have the sense, when I put it first, a few people only read that part and say to me, if they see me, “I read your blog that you are doing fantastic.” But the good news is that my exercise tolerance is continuing to improve. Just a couple of months ago, I could not walk from the house to the car without being very short of breath. My heart raced all night long. On Saturday, I climbed Mount Erie, the 1100-foot mountain on our island. I did it slowly, but made it to the top and back down again with a round trip of 5 miles and 800 feet of altitude gain and loss.
I am grateful for the progress I’ve made. If I had just a bit more energy and exercise tolerance, if the one day of week of diarrhea (from the chemo) would stop, (I was having it every day after my stem cell transplant), and if the neurological symptoms were gone, I would feel I was back to normal.
I am grateful for Jerry, Kevin, Jean, and Diane, who always sincerely ask me how I’m doing . . . and then pause to listen to my answer. There may be others that I’ve forgotten to mention.
I am always grateful for Denise (and my kids) sticking with me and loving me, when there isn’t much left to stick to.
I am grateful for my readers here, who my reading and following, tells me you care.