Friday, May 22, 2009

Quantity or Quality of Life! Which Would You Choose?

If you had a choice of quality of life or quantity of life, which would you choose? Suppose you had a chance to extend your life five, ten or even more years, would you do it? But wait. Before you say yes to the possibility of those extra years, you must consider what it is you have to do and the various possible outcomes and consequences of taking that chance. In this scenario you have to have a bone marrow transplant, or as it is being more commonly referred to now, a stem cell transplant. Here are three possible outcomes:

First, there is a relatively high chance you will die within the first couple of months.

Second, if you don’t die, you might fight years of battles with problems that could include painful sores, stomach or intestinal problems such as severe intestinal inflammation, mucosal sloughing, severe diarrhea, abdominal pain, nausea, and vomiting, skin sores and rashes, or a host of other possible issues.

Third, after a rough year or maybe two, things return to normal and you start feeling really well and enjoying life – and then you relapse again.

Would you still take the chance?

I have said for a long time, much to the chagrin of my wife, that I choose quality. That is the choice that drove me to my first treatment decision and my choice of the chemotherapy drugs I had for eight rounds. BUT, quality is what I say right now. What about when my health deteriorates to the point I am told there is nothing more they can do for me except attempt a stem cell transplant or die. Will I still say the same thing? If and when that time arrives there will be very little quantity left and quality will have disappeared.

However, what if I am not at that point? Suppose I have only deteriorated to the point of having to take more rounds of chemo, like I am getting close to right now. Then at the end of that treatment cycle, I go into remission, or close to remission and the doc says now is the best time to do the transplant because I am still relatively strong. I would have to undergo very heavy duty chemo to totally wipe out my bone marrow and then get the transplant. What would I do when that choice is presented to me? My doctor at MD Anderson already said that when I start the next treatment he will probably refer me to the transplant doctors to start the process. So this isn’t just pie in the sky speculation.

I have been thinking about this for some time now, particularly because several people I have come to know are agonizing over this very decision of whether or not to go for a transplant. Stacie wrote on her blog, “I have referred to myself as the ‘Self-Confessed Transplant Wimp.’ Just the mention of a stem cell transplant sends shivers up my spine.” Well, I feel the same way and for most of the same reasons as Stacie states. We both have seen way too many people die soon after attempting the transplant. And these were strong, relatively healthy (for those in our situation), and some even young, people. They all had great attitudes going into it. But they didn’t make it. I have also seen some who did make it but continue to have many, many problems due to Graft Versus Host Disease. Basically the body fights itself. One fellow had a transplant six years ago and he still has constant problems with very little quality of life. I have stopped reading his blog regularly because it was so very depressing. Not that he was whining at all, but as he documented the facts of the assaults on his body, I couldn’t help but cringe. He doesn’t post much now, either. But, I still pray for him.

Lest I sound completely negative, there are also those who enjoy successful transplants. Those are the folks who have come out the other side with very few problems. One person I know isn’t a year out and has had no problem of any consequence. However this person still has stated the idea that it could all make a turn for the worse at any moment is an ever present thought.

Theresa Brown, RN, wrote a blog post on the NY Times website that several other bloggers have referred to. She is an oncology nurse and works in a transplant ward. Her post is titled, "When Cancer Treatment Might Kill You." She tells the story of a young man with a 2 year-old son who underwent a stem cell transplant and his body is being assaulted by Graft vs. Host Disease (GVHD). It is well worth the read as it tells about working with transplant patients from a nurse’s perspective.

At one point she writes:

“The good news was we had cured his cancer.
He was disease free — a small miracle — if only he could survive the transplant. If only. But people do survive: the 50 percent who make it through the first year keep on going, knowing that GVHD can strike at any time, hoping for the best."

When the time comes to take the chance, will I make that choice? I don’t know. It will take a lot of prayer and serious thought and discussions with my family.

But I don't want to think about that anymore right now. I need to get ready to go to our new lake cabin in NY in a few weeks. Excuse me while I go put my head back in the sand.


Cindy said...

As your daughter, I have the same concerns! I am selfish and I want you here! But I love you too much to let you suffer. Gavin and Jonathan need their Papa, but I know they wouldn't want to see you tortured with pain. But what if that doesn't happen, what if you are the 50% that makes it. Just think the old you again... OK a much OLDER version of the old you.

Anonymous said...

I think when push comes to shove, most people will opt for life.

If you want to be saved the tough decision, get massive nodes like me. Transplants aren't offered to those with massive nodes. End of possibility. I don't know if I'd do it anyway, but that possibility has been taken away from me.

John Wagner said...

Dear Anonymous, I think you also posted a reply to my April 14 entry about our lake cabin. If so, please email me at I really would like to talk to you some more.

Anonymous said...

John---EXACTLY! Right on......a beautiful piece. Since I am on that list of people trying to pick transplant or not, this really hit home. After a month of seriously thinking about this....I realized that what the Drs. are asking of you and my husband is basically to pick what's behing the box or the curtain.....the box holds more invasive chemo with no glimmer of a cure, yet....quality of life can be good. The curtain holds an unproved, still in trials, transplant with massive side effects and sobering statistics. Also without a proved cure for CLL. I told Tom the other day that a head on car wreck would be better at this point than having to potentially pick the way you are going to exit this Earth. And that is what you are asked to do.
I think the ostrich looks fantastic without a head--LOL!

Jenny Lou

Shari said...

Good post, John. So many people have no idea what a huge decision it is to have or not have a transplant. A lot of people don't even know the transplant itself can kill you. That decision may be in our future. However, my John's biggest problem has been his nodes. So if that comment was true, maybe he won't have that option to even consider. I hadn't heard that before. I liked the cartoon, but I don't think taking life one day at a time is putting your head in the sand at all. Your post clearly showed that you are not living in denial. : ) I'm glad you left a comment on my blog because it brought me back to yours again! I have been so out of touch with my precious CLL friends lately!

Marc said...

So true John! And to think how I agonize over the possibility of having to just start chemo, despite the fact at this point it seems far off, I know it looms out there.

I've always said, after considering all the potential side effect, etc. if I decided on a transplant, it would be the treatment of last resort, and it would only be a mini-allo.

Fortunately I don't have to make that decision any time soon, and while I can't pretend to know what it must be like for you, I can't imagine it being an easy decision to make.

My only advice is go for the gusto. Enjoy life to the fullest, try not to agonize over it (easier said than done), and wait till the last possible minute to make the decision.

Best wishes