Sunday, December 13, 2009

Security is mostly a superstition

The good question has been asked: Am I rushing into a second transplant because of my desperate hunger to be done with this internal villain? Am I deciding more with my heart and than with my head?

I don't know how much of a role my impatience plays, but I know my temperament does influence how I see the world. How could it not?

I try to factor that in. I try to bounce my thinking off others including my doctors, my friends and family, my readers likes you, and my CLL support group.

I try to play out in my calculating mind and on the keyboard the various plans and their risks.

Yet in the end, I think Helen Keller nailed my world view when she said:

"Security is mostly a superstition.
It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold.'

This is an overly broad and sweeping damnation of timidity. I would advise any friend or any patient to take all necessary precautions, buckle up their seat belts, and avoid the high risk zones of life if they can.

The last dependent phase hangs out there, and in doing so hangs the rest of the critique out to dry - if they can.

Can I avoid a transplant? Absolutely. But for how long and at what cost?

Is playing it safe, not safe in the long run? Must I take the big risk for the big reward?

Both my head and heart answer with a screaming YES to both questions.

I wish there was a pill or a shot or an infusion that could make this nightmare disappear, but there is isn't. Not yet, anyway. No way am I happy about the prospect of a redo transplant with harsher chemo and the the likely ravages of GVHD.

I am no longer the adrenalin junkie that I used to be. I admit I still crave novelty, but stomatitis is hardly the experience that is missing from my bucket list.

I think and feel that this most frightening and difficult route is also the most logical and safest, if that makes any sense.

But I will keep researching and reassessing. Let's see what Dr Forman says in a little over a week.

CBC and IVIG infusion tomorrow.

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5 Comments:

Anonymous Anonymous said...

In my layperson opinion, I'd weight the advantages of trying standard treatments versus the disadvantages of a second transplant.

A quick perusal of clinicaltrials.gov will show perhaps a hundred trials involving CLL in one way or another. The recent paper in blood that Dr. Byrd raved about suggests that it is possible an effective treatment that attacks CLL cells may be in the offing. Time and money are the only things holding it back.

Many treatments increase the risk of further genetic damage and either an acceleration of your CLL or a secondary malignancy.

My sense of my situation, 11q del, other genetic lesions (probably), ZAP-70 positive, unmutated, etc. etc. is that it is not unlikely Dr. Kipps can keep my CLL at bay for several years, at least (my 11th year anniversary of my dx was in October).

He has never suggested a transplant to me, since I've seen him beginning in 2000.

I haven't read every post of yours, but I assume you've seen a CLL expert (perhaps Dr. Kipps himself?). What do they suggest?

For what it's worth.

Barry

December 13, 2009 at 7:56 PM  
Blogger Dragon Slayer said...

Brian
I hear the discord in your words, the out of tune harmony that continues to play in your brain. I realize the seriousness of the decisions looming over you-it's what a lot of us go through. There is no RIGHT decision-it's the one that makes you breath a bit easier when you think of it.
Wanda

December 14, 2009 at 8:06 AM  
Blogger Deepgreen said...

Nothing brings clarity like a direction; particularly with the risks of a second transplant. This will bring the sharp critique from your team of (world class) advisers as they all know what is at stake. Therefore, I consider inaction by far the more dangerous course - you will always have the option of slowing down the transplant direction (if this should prove prudent) but once time has passed due to inaction it cannot be regained. Time is not your friend here with disease progression.

Therefore, put your team to the test and announce a decision to a transplant and gauge their reaction and most importantly your own.

But the above pales by comparison to your quotes from Sun Tzu and Helen Keller.

As well I re-read your earlier build up to the first transplant: training, good organic food and development of the mental fortitude - I am sure you will approach this with no less preparation thereby improving the odds tremendously.

December 14, 2009 at 10:00 PM  
Anonymous Anonymous said...

Brian,

Okay - if both head and heart scream that it's the right thing, it's the right thing.

You have a lot of both...and I was not sure if they were in sync or in competition. Now I'm sure.

And congrats on the good news today (tomorrow in blog land)

Helene

December 14, 2009 at 10:15 PM  
Anonymous Dennis Pyritz, RN said...

Dear Brian, I am a fellow CLL and transplant survivor as well as an oncology nurse. I also publish the website Being Cancer. Your post has been selected for this week's Guest Post feature. I will include two links to your site. Bloggers usually see an increase of activity after a Guest Post. You will also be listed on our Honor Roll for Excellence in Cancer Writing. Our thoughts are with you this season as you face the prospect of a second transplant. Please keep up the good fight and the good writing.
Dennis (www.beingcancer.net)

December 22, 2009 at 7:31 PM  

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