No, it is not what you think. I’m not talking about the mysterious realm beyond the grave. I am talking about that interesting process where you were “all but dead” and then get a chance at life again. Think of Wesley in the Princess Bride, who was mostly dead. I bet many here have been there. It changes you doesn’t it?
It has now been twenty months since I was diagnosed. There has been a lot of water under that bridge, some of it not pretty. This is not melodrama but when I was first diagnosed, all I heard (and it wasn’t what my ears wanted to hear) was that it was grave. I’ve mentioned before that for some reason when you combine the cancer of multiple myeloma and renal failure the prognosis is very poor, an average life expectancy of nine months.
So, the doctors in Bellingham were not being pessimists when they told me they would do what they could, but I must prepare to die. Then, as days matured into hard weeks, I began to read research paper after paper. That’s what medical providers do when they’re sick. The studies were not reassuring but showing that it would be a real struggle to make it to the fall (after being diagnosed in January). I won’t even go into how painful that period was for me and my family. Terrible goodbyes. Many of you have been there and you know what I’m talking about. I wrote on those days here, and was too raw and painful for me to re-read.
But here I am. It’s twenty months later and except for nuisance and persistent symptoms, I’m feeling okay. My cancer is in partial remission. But the dreams were all discarded and the goodbyes said. Is it safe to dream again? Is it safe to hope? It is safe to plan on a future?
I have many projects that I’m working on, most of which are for Denise in case I’m not here. I plan projects only a month in advance, not knowing what the next month will bring. My house painting is in its third month, but not by design. But I do have a time bomb in my marrow, a tinderbox in my kidneys. But, we all do, don’t we? You are not guaranteed a tomorrow are you?
Some would say that my survival so far is a miracle. A real work of God. I am not so fast to say so. And no, it is not because I don’t believe in God or that God doesn’t have the power to do miracles. It is certainly not because I’m not grateful. I agree with Einstein’s point of view that either everything is a miracle. . . or nothing is. I’m the former. Everything from the “Big Bang” forward is a miracle. But what happened to me, I mean surviving like I did, is within the boundaries of the natural. People (rarely) who started out like me have lived 20 years. . . I think? The average is nine months. When I believed that supernatural miracles were common not only was I delusional but I found out that if an expected miracle did not occur, those people who assure you it would, are the first to abandon you when things go sour.
I admit, there are days when I (from strictly an emotional place) think that things may have been better if I had not survived. Would Denise have moved on by now? Would I just be a fond memory and she builds her new life?
I have been fighting with insurance companies for 100 straight days. I cannot express the frustration I feel. I’ve lost many nights of sleep over this. It is like doing your taxes for the IRS once or twice a week (filling out forms for various programs) and then being disqualified or they loose everything and you have to start over. Today was one of the worst such days. I cannot count the hours and hours I’ve been on the phone. On Thursday, I will miss my first day of chemo due to insurance problems and I methodically started this process in April (the 100 days are the most intense part). I can’t believe this is happening to me when I planned so carefully to make sure it didn’t. Does stopping chemo put me at risk? Eventually it will if they can’t resolve this. That’s what makes it so frustrating, as if fighting cancer itself wasn’t hard enough. Anyway, it is days like this that I have to ask if survival was really worth it. I have fought hard. . . but sometimes I ask for what? So I can paint my house? Is it just to give the insurance companies someone to fight with? Am I more than that? But if you are honest, I think many people have these bad days of such thinking.
On the positive side, my son Daniel and his girlfriend were here this week-end. The first time I’ve seen them since COVID-19. They got tested an were negative so they could come home. Ramsey also came home and my son Tyler and his new wife Katie (she is not new to us). The last two have not tested so we have to treat them with social distancing. We added my last two children and their families via zoom on Sunday. When I see my family, I realize that I stay on this side of the dirt for them and to enjoy them. That’s what makes me happy. But are you allowed to dream for yourself again? To hope for a tomorrow? When do you start to live again, and not just prepare for death and for your absence? Is there life after near death? I really don’t know. I need to ask Wesley.
Mike
J. Michael Jones 