Friday, February 23, 2007

Hanging on

Some friends of mine were wondering: Is a transplant worth it in chronic lymphocytic leukemia? Is it worth the potential hell of graft v. host disease? Is it worth the risk of failure or relapse? Is it not better on some level to get a great remission (or two) with chemotherapy and live to the fullest in the time before the disease claims you piece by piece? At some point, might it not be wiser to take a shortcut -- perhaps assisted suicide? -- around all the pain and trouble, complications and disappointments, that come with progressing disease, shutting doors, and a body at war with itself? There is no cure, and we know the suffering that the long drawn-out end might bring, so why endure it, and why visit it upon our loved ones?

That's tough stuff to hear. But these sorts of questions can weigh on the minds of CLL patients with progressing disease, especially younger ones for whom the bell seems to toll all too soon. We are the rock and roll generation, after all: Live fast, die young.

CLL affords its victims the grace of time -- time to say goodbye, to make amends, and to think about the consequences of fighting, and of not fighting. Those who had always hoped for a quick and painless passing may find this discomfiting. With CLL, one's passing might be relatively painless, but it is not quick.

And so it is legitimate to wonder about things that our friends and family would rather not hear. Some of you reading this are no doubt thinking "I wish Dave would write some more about his automated trash can." But death is potentially part of the CLL picture, and it is a fair topic of conversation.

And so I entered the discussion my friends were having, and this is what I said (with a little extra added in hindsight, as is a writer's prerogative, thus making me seem much more erudite than I did at the time):

There is a time to lay down one's arms, give up the fight, and go gently into that good night. This is when people quietly decide enough is enough and simply give themselves permission to let go, letting the end come when and how it may. Some go into hospice, some stay at home; I’d like to drag myself to the beach and stare at the sea and be carried away by its rhythm.

But for me, that time will not come until every avenue is exhausted. I have heard transplant stories, and transplants can be a living hell, but they can also be relatively easy. Even for people who have to put up with all kinds of problems, the benefits can outweigh the drawbacks. Patient blogs tell the story: A 17p-deleted patient on her second transplant who, despite skin problems, goes on a cruise. A young father, in his 40s, who suffers post-transplant seizures but finds them a small price to pay for the privilege of being here with his wife and kids.

So long as I can prop my ass up in bed, hold the hand of the woman I love, laugh at stupid puns, listen to music, see the hawks flying outside my window, taste a fresh apple, and smell the desert sage after a rain, I will fight this thing.

Why not do a transplant now, cut out all the intervening waiting and worrying and fighting that can drain you emotionally, financially, physically? Well, transplants are risky (even if they hold out the promise of a cure for some) and the longer I wait, the better the procedure will get. It's all a matter of timing. I'm 50. I can wait 10 years, if the disease will allow it, which it probably won't. But I can have a pretty good quality of life for the next however many years, and then roll the dice.

I am not a gambler but this disease is making me one. CLL is all about gambling. Dice. Poker. (Russian) Roulette. Pick your metaphor. Leukemia is filled with games of chance. Timing is everything, along with luck.

Sure, it's tempting to go with something like RFC to get a great remission now and not have to worry for awhile. But the cruelest thing about this disease is that these remissions don't last, and they get harder to duplicate. Is chemo a fool's paradise? Or does it allow for a last bit of real paradise (aka disease-free living) before the shit truly hits the fan? I can't fault anyone for going with chemo now; who knows how it will all turn out. The best we can do is play it as we see it.

Should we avoid a transplant, sit tight for as long as we can, and wait for a cure? (Calling Mr. Godot!) I don't think we'll see a cure anytime soon, especially for those of us who have gone beyond the infancy of the disease. Honestly, I think we're at least 20 years away from a cure. A CLL expert doctor once said that the fight against CLL will be one long war of attrition. I think he's right. What this means is that we patients have to play the game with the cards we're dealt today. (Who knows, maybe we can exchange a card or two if things go right; I don’t think a cure will come soon, but I do believe there will be incremental progress in treatment.) None of this is a reason not to stay in the game.

And so I say, hang on.

There will be plenty of time to explore the world after this one. So long as the sun rises and there is music to be made, so long as there are exotic ports of call and children to hug, this life grants enough small pleasures to make the pain of struggle worthwhile.

So, hang on. As long as Marilyn can hold my hand and I can know she's there, I'm going to hang on.

Today is our 24th anniversary. I do not know if there will be twenty-four more. But it won’t be for lack of trying. Happy anniversary, my sweet. Together, we will see what love can conquer.


John Wagner said...

A very happy anniversary to you and Marilyn! If anyone can make it another 24 years, it will be you!

Jenny Lou said...

Happy Anniversary David and Marilyn. Your thoughts on the discussion we are having are are a wonderful. Thank you David. You always pen the words so poetically.

Anonymous said...

HAPPY 24th ANNIVERSARY!!!!!!!!!!
Marilyn and David!

Do a little dance, make a little love (don't mean to sound nasty), get down tonight! Drink a little wine,
eat a little food, do it ALL!

I enjoy your blog more than anything else online, thanks!


Anonymous said...

My, we're in a maudlin mood today, aren't we?

Twenty years to a cure? Hmmm, aren't some people cured, right now? Isn't a BMT supposed to be curative, potentially at least?

Besides, cured is a difficult word. If you have a heart attack, and survive with a weakend heart muscle, are you cured? Could you live for many years with proper care? Could you die tomorrow of a heart attack that would finish you off?

Say you are diagnosed with CML. Gleevic can control your disease for many years; or not. Some doctors are now cautiously optimisic that some patients can eventually go off the drug. However, even now, a certain percentage of people relapse and become refractory to Gleevic every year.

So, if one could have 15 more years of a good quality of life, is that good enough? Is that not a cure for a 90-year-old man? Maybe not a 35-year-old man, but, hey, you can't have everything.

What I'm saying is that most folks get a nice remission the first time out, and have maybe three or four or five years with a good quality of life. More drugs are becoming available, more is known about CLL, the 'weak points' of the disease, and progress isn't stopping now.

I think you're a bit harsh on your assessment of the state of therapy in CLL. Yes, it is a tough disease, and no, there is no sure-fire cure with acceptable risks.

But tomorrow, there may be. If there is a treatment which looks extremely good, the FDA, believe it or not, can move fast. Look at the history of Gleevic.

Bob Larkin said...

What a marvelous union! A sincere and belated happy anniversary to you both. David, I think you are the brightest star in this CLL sky of ours. I know I'm looking forward to 24 more years of your blogery .... is that an appropriate word? I'm with the last anonymous, though. I think we're closer to a more chronic acceptability, if not a cure.

Bob Larkin

Pat said...

I missed your anniversary. Please accept my belated congratulations.

Gardner said...

Sure, a mini allo transplant is a cure--for about 35% of the people that get one (that's the two year disease-free survival rate).

But for some of us there's no other choice. My first relapse after a a 2-3 year remission from RFC was resistant to all available treatments so transplant was my only option for survival--and I was barely able to get debulked for that (using an auto transplant with cells I stored during my remission).

I'm at day+63 and so far have had very minor complications, and a mild case of skin GVHD. I was diagnosed at 43 and am now 48.

Keep in mind that transplant survival decreases with age.

Nancy said...

Funny, I just had my first "crisis" when I found you. I am not mutated, in my fifties, Trisomy twelve. Dx'ed in 2005. Chaya's middle bucket. Ahh...breath easy. No rush. Years to go. Last month, my neutrophils bottomed out. BMB revealed that my bone marrow was packed with CLL 85+percent. I think you said in your blog that is why people die. The BM flat lines. All of a sudden I am in the worst bucket, I am on red alert.

I get myself to OSU, Dr. Lin, all my other numbers are decent, lymph decent, RBCs decent. He says to me, no problem child, FR, and, if that doesn't do the trick we have some more chemo to mop up what's left.

I come home and read like a speed-freak everything I can and my gut says...NO FLUDARABINE. I write Chaya and miracle, she writes me back, points me to the article on low dose R. I write Terry Hamblin and the GOD of CLL writes me back! (am I blessed or what?) and he says maybe steroids might nudge it back or Chlorambucil.

Now, my gut continues to tell me this. Why in the hell would you drop an atomic bomb on your body to kill the CLL, when in about 33 months it comes back with a vengeance and now you have a raging disease and a bombed out house. Why would you do that?

What does a CR really mean, if the disease returns in 33 months. It is like fool's gold.

Why if the disease returns, why not keep nudging it back as best as you can while staying alive and keeping your body as healthy as possible.

So, I decide on low dose Rituxan. Can't find an onco in Cincinnati that will do it yet, but I will keep trying. It can't hurt to try it.

Took some Neupogen that got my neutrophils out of critical and back to normal. Don't know how long they will stay up and know I need some treatment....and what do I find today for the first time?

Your blog! Is that karma or what?

Your low dose, my way of thinking blog!

Hopefully, even for a desperate, bad to the bone marrow grrl like me the low dose Rituxan might buy me a year or so before Chlorambucil.

Love your blog it is just the best.