This has been a post that I’ve been dreading to write, and have been putting off for a long time. But at this point in the game, I want to put it forward and clear the air on a subject that I’ve been keeping quiet for a while. The few people who already knew are hereby released from their vow of silence; they did good.
There isn’t a short version, but I’ll try my best.
In 2005 and 2006, I started noticing that my energy levels were lousy, and that I had different types of recurring health problem and problems with attention span, et cetera. In the fall of 2006, I started taking a series of tests, and a day or so after my 50th birthday, last February, I got the results back.
I have a case of CLL - chronic leukocytic leukemia. It was described to me by the doctor as the sort that can take years and years to get to a critical stage - 12-15 or so. Of course, the relevant question is when did that timer start? Honestly, I have no idea. So I have zero idea as to the time left on my slow fuse.
What my understanding is is that there is a set of treatments, once the critical stage arrives, that can hold it off for a while. I got the idea of 6-18 months, but eventually, the treatments lose effectiveness. What seems to be the most common situation is that you lose your ability to fight off disease, and something comes along and nails you that normally, most people would be able to resist.
It means that I’ve caught stuff and found it hard to fight back, and I’m afraid that the present illness that I have is either a sign that the defenses are cracking, or that the CLL is is messing with my body in such a way that is directly causing this. I’m just not sure, and the doctors are fumfaing around with this. Yes, I’m running very very scared, and tonight, I feel really miserable with this thing - like I have some sort of fever.
The family has been very supportive. Yes, Mere knows, but she thinks of it as something that won’t hit until she’s a grownup - however, she’s been really rather concerned about me being so ill for so long. The subject of leukemia came up a few months ago, and I told her then about my ’slow fuse’, as I’ve tried to use as shorthand to people who were in on the secret.
The two biggest reasons for keeping it quiet have been (1) making sure that Mere knew about it from me at the right time and could absorb it, and (2) my fear that letting people know about it would either make me someone to avoid (as in Too Much Tragedy, Can’t Deal With Him) socially, or that people would assume that I would croak any day and write me off. Hopefully, I was wrong.
Even though I’m feeling really wretched tonight, this doesn’t mean that I know the jig is up. I still have no idea as to when my slow fuse will sputter out. Hopefully, not for years - the longer I can spend nurturing Mere and being with my family, the happier I will be. But I finally came to the realization that I should get this out of the way and write this now, in case this mess suddenly goes south on me and I don’t get the chance to say what I want to say.
I know that when the time comes, Mere will be beyond devastated to lose her father. She and Susan will need all the support and love you can give them when that time comes. (You can find Susan over at marmot63 on lj, or at susan at sisterfar dot com.) My greatest regret would be in not seeing Mere through to womanhood, and seeing what she makes of herself. I love her so terribly much…
I have tried to seek internal support from my faith and my philosophy of life; I remember how my mother dealt with her oncoming death, dumping a lot of her previous standing in favor of a more old-timey religious stance. My belief in God and miracles is very strong; I live with the miracle of the twins, and while I don’t know God’s whole purpose for me, I rely on his wisdom, mercy, compassion and love.
I look at it all in this manner; in an afterlife, I will miss most terribly the day to day connection with my family, and would wish so much to be part of their daily lives; helping them, advising them, having fun with them. That’s what I miss the most about my mom, and I imagine it will be much the same.
And if I’m mistaken, and there is no afterlife; well, I’ve done my best in my life, and I have a lot to be proud of. Since everyone, sooner or later, will face this hurdle, and I can’t do anything that present medical science will allow for, I will do what I can to stave things off, but I can’t do so forever.
The best way to be remembered is with love in the heart of your family and your friends…my mom and granny were *always* telling me about different people that were (a) dead and (b) so wonderful, and I should have known them - and I finally said - gosh, are all the live ones stinkers?
Well, no, of course not. And I have a ton of things to do. My whole effort over that time since I was diagnosed has been to dig through my stuff and make some kind of organization out of it. Something for Mere to have when I’m gone, and to reduce the load on my family of loose papers and paperwork and whatnot. I know what a mess it was to clean things out after my parents, and I wouldn’t wish that on Mere and Susan.
Hopefully, I’ve still got a while to work on this. If that gets cut short, I’ll do what I can in the time I have left. Mere was asking me that other day to get something published before she grows up…
In any case, my love and thanks to you all. And here’s hoping for the best.