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The time arrived…

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.


( 117 comments — Leave a comment )
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Jan. 6th, 2008 06:17 am (UTC)
first ((hugs)) and a lot of empathy for dealing with that sort of news, even though it's not new news to you any more. Thank you for sharing it.

second, my mother was diagnosed with CLL some ...20-23 ago (I forget now how old she was - early 40s, I think) She was "watch and wait" until ... four or five years ago. I think that was it. At that point her counts got to the point where they did the treatments you're probably talking about (or the precursor to those - they've improved in that short a time.)

She had minimal negative reactions from the treatment (I was a basket case during the first set - it got better), and was pronounced "in remission" - that's a funny thing, really, with CLL, it's not a "cure", but it's still currently undetectable. She goes back for maintenance treatments, and they've kept her in good shape. She's 65, and incredibly active.

When she got the diagnosis it really affected how she lived her life, and she's lived her life MUCH more fully since then. The silver lining on this horrible diagnosis was pretty thick, for her.

It is still scary every time she gets sick. She had a horrible bout with shingles last year that took her forever to shake. We're pretty careful not to go see her when we're sick - no point in taxing her immune system, etc.

BTW, if you had ANY bloodwork done before your initial diagnosis and they didn't catch it, you probably didn't have it then (talking about when the clock started 'ticking') My mom's was found in a routine CBC - it shows up very easily, apparently.

But, I tell you all this to give you a real-life story of someone who is living with it long-term. And hopefully some hope that you'll be around for a long time to come! It's sometimes called "the good cancer", although that's a terrible thing to hear, I think, for most people. It's kind of an oxymoron, or at least sounds like it.

((many hugs))
Jan. 6th, 2008 06:54 am (UTC)
I have tried very hard to NOT overworry myself with reading up too much on the disease. Normally, I'm Mr. Research-It-Out. I quickly discovered that there's a ton of variation in the disease and found that I could drive myself bats reading up on it.

But really, thanks for the comments. I was hoping for the Long Fuse. I really have a lot to do, and a lot I want to do with my family. I have no sure idea as to when this hit the fan; my guess is that it's been around since 2004 or so, but who knows?
(no subject) - mactavish - Jan. 6th, 2008 07:32 am (UTC) - Expand
(no subject) - jrittenhouse - Jan. 6th, 2008 07:39 am (UTC) - Expand
(no subject) - mactavish - Jan. 6th, 2008 07:52 am (UTC) - Expand
(no subject) - jrittenhouse - Jan. 6th, 2008 08:15 am (UTC) - Expand
Jan. 6th, 2008 06:20 am (UTC)
Here's hoping for the best, indeed. I hope that you're at the long end of a very long, very slow fuse. But just in case you're not, I want you to know: I think you're a wonderful person, and I'm glad to have you as a friend.
Jan. 6th, 2008 06:55 am (UTC)
Now, that's a recommendation! Thanks!
Jan. 6th, 2008 06:24 am (UTC)
Now that that's said and done, and I can relax about not letting anything slip, I will say that I think you're a fabulous person, and I'm glad I know you. And if I'm still around when you're gone, I'll still think so, and we wouldn't forget you or your family for the world. I know I'm not as active on here as I used to be, but that's a function of other facets of my life right now.

...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.

Yer darn tootin' you were wrong. I'm not writing you off a whit.

Wishing you all the best, and let's hope medical science advances faster than that slow fuse burns. Hang in there, and I hope you get to the bottom of that fever. See someone about it ASAP if you still have it tomorrow, because you may need IV antibiotics, depending. There are some nasty things going around this season, and being immunocompromised, you don't want to take chances when you don't have to. Take care.
Jan. 6th, 2008 06:49 am (UTC)
I fully expected them to throw me into the hospital right after New Years, and went to the doctor's office with a bag packed and ready. No, they said, we want to do this path test from the fine Aspiration needle, and that really stirred up whatever the hell it is.
(no subject) - jrittenhouse - Jan. 6th, 2008 06:57 am (UTC) - Expand
(no subject) - one_undone - Jan. 6th, 2008 07:07 am (UTC) - Expand
Jan. 6th, 2008 06:31 am (UTC)
yowza. I've been concerned for a while about the sick stuff- I guess there was something going on- I've been concerned.

Jan. 6th, 2008 06:46 am (UTC)
The thing was that people were seeing me at cons looking like hell (cold sore gone nuts, etc) from the effects of the disease, and I've had to massively curtail my activities - with lots of sorry-I'm-sick comments. Eventually, I figured that people would figure out that something big was wrong. Susan really wanted me to be open on this; normally, I'm Mr. Wide Open about myself. This was a hard thing to hold back on.
Jan. 6th, 2008 06:37 am (UTC)
Still here. Won't be leaving any time soon. Do take care, and see someone about that fever. I may not be local, but I'll cheer you on from up here.
Jan. 6th, 2008 06:42 am (UTC)
Oh Jim, that's a bitter pill. I'm so very sorry this has come to you.

It looks like you've got a good sense of what you want to do with however much time you have. That's something.

Best of luck holding off the inevitable. Please let me know if there's anything I can do to help.
Jan. 6th, 2008 07:12 am (UTC)
You know what to expect (more or less) and can make plans. That's a great deal more than most people get. You're a strong person with family and friends... and time. There are worse fates.
Jan. 6th, 2008 07:38 am (UTC)
Most certainly. There was a friend of mine (he's out on my f-list) who lost a SO to a rapid cancer within a month. Reading his apazine on that was one of the most memorable things I've ever seen in fan writing; just heartbreaking.
(Deleted comment)
Jan. 6th, 2008 07:20 am (UTC)
Well, that was exactly why I went to look into it (the constant sick, foggy brain, low energy).

No, I know you don't, but I always treasure your friendship, and just stay in touch, OK? It's been scary on this end.
Jan. 6th, 2008 07:17 am (UTC)
I'm sorry, Jim. That's lousy news for you to have gotten.

Glad your fuse has been this long; hopefully, it's got many years left on it. (And, who knows, by the time it cranks up on you there may be yet better treatments available.)

Thanks for feeling able to share with us what's been going on.
Jan. 6th, 2008 07:20 am (UTC)
Newer treatments: I'm sure hoping.
Jan. 6th, 2008 07:39 am (UTC)

I'm sorry to hear this. I'll keep my fingers crossed for you to have a much time with Mere and Susan as possible.

There's probably not a lot I can do from Long Island, but do let me know if you think of something.
Jan. 6th, 2008 07:47 am (UTC)
Aw man. Aw man.

Hugs and hoping for the best. Sounds as if you've got your head on straight about this. I know it sounds fatuous, but, if I can do anything, let me know.
Jan. 6th, 2008 08:13 am (UTC)
I'll let you know. Thanks for the offer. And yeah, I've tried to get my head on as straight as I possibly can about this. I think that the most prevalent feeling that I would have if/when things go south is a huge amount of sadness and grief at leaving my loved ones.
(Deleted comment)
Jan. 6th, 2008 08:11 am (UTC)
Yeah, you're right. Knowing helps a lot, of course.

BTW, I take heart from reading about your life all the time, from the 'well, if M can deal with XYZ...'standpoint.
Jan. 6th, 2008 08:09 am (UTC)
I am praying/hoping/wishing for your best health possible and many more years of being here for your girls.

I have learned so much and benefited so much from your existence just here on LJ; you are a gift to this world and I am proud to know you even peripherally on the edge of your awareness. I am going to have faith that will continue a long time yet.
Jan. 6th, 2008 03:28 pm (UTC)
Thank you very much.
Jan. 6th, 2008 08:14 am (UTC)
Hugs and Prayers and Blessings your way, Jim.
Dear Jim,

How brave of you to just bite the bullet and write these hard words. My heart swells and goes out to you and all you love, and who love you, facing an illness like this with such courage. I'm offering unasked for advice, but I've lived a hard life myself, and lost huge numbers of friends to AIDS and other things. I think I have some wisdom to offer you.

My basic take is that you are completely alive until you are completely dead. You are a wonderful, intelligent, thoughtful, caring man, a decent human being, a terrific father and a good husband, and don't forget, a stellar friend. None of that can be taken from you by illness. I'm a nominal Christian at best, but I believe that Prayer Changes Things and the People Who Are Prayed For. It also changes those who pray.

I've always liked you a lot. In fact, I've always admired you a lot too. You know and share so much about so many things with so many other people. You have shared the blessing of Meredith with us every step of the way. That there are two Meredith's is proof of miracles, as you pointed out.

I'm disabled, and I live a long damned way away from you, but prayer doesn't recognize distance. For years now, Our only contact has been at conventions and through Live Journal. I'm grateful for that. I'm hoping to keep you in my life for many years longer. the doctors can no more predict your death than you can. Like many things, life is about quality rather than quantity, and you get a choice in that, to some extent. Choose to enjoy your life, every joyous and boring moment of it.

I pray for you a good long period of health before the grim reaper comes a calling. Be neither afraid nor quick to embrace him. Make him wait until you feel darned good and ready. Meanwhile enjoy what you have, live in the moment every day. Make plans for later, but live in the now. You are not alone. You have friends you never even knew about. And we are all pulling for you.

Love, hugs, and wishes for your best health, Stephy

Jan. 6th, 2008 08:16 am (UTC)
Re: Hugs and Prayers and Blessings your way, Jim.
*tearing up* Thanks, Stephy. Thanks a lot.
Jan. 6th, 2008 08:51 am (UTC)
Good God, Jim...that's a bombshell. I too, have seen people live a long time with CLL, so I'm not going to be writing you off just yet: ) I'm also not a person to be running for the hills with that sort of pronouncement, either. If there's anything I can do, or if Susan or Mere need anything, don't hesitate to ask.
Jan. 6th, 2008 03:19 pm (UTC)
Thanks. If something comes to your mind to mention to me on the subject, let me hear from you.
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