Tuesday, December 22, 2009

No push back

Dr. Forman and I reach the same game plan, clearly by different routes and from different starting points, but we have a very similar strategy.

And that is very good, and hardly to be taken for granted. In fact in CLL, it is more often the case the doctors and the informed patients are not in agreement about the treatment options. And is almost a certainty that if you have two CLL doctors, they will not agree with each other.

So here is the rough plan.

First, I must continue the IVIG (intravenous immune globulin) every two weeks which is doing a great job handling my ITP (immune thrombocytopenic purpura), except for the one fright a month ago when for some unknown reason my platelets dipped below 30,000. Dr. Forman points out the obvious, that my ITP is driven by my CLL induced immune dysfunction, which is clearly not related to my tumor load. It is "dose independent", which means, at least theoretically, that while my CLL may progress, my ITP shouldn't become more recalcitrant. The implication is that the IVIG may still have a long and successful run ahead of it.

In early February, I am booked for a BMB (bone marrow biopsy) and abdominal CT scan. Last look see was in August, so it will have been 6 months. Pretty standard fare to stage the disease like that, not that anything in this disease is ever standard and certainly one size fits no-one.

Both Dr. Forman and I are spooked by my ITP. It is the driver of my need for treatment. My CLL is not that threatening. In fact, it is pretty wimpy these days. However my low platelets give me the heebie jeebies. Scare my doctors too. It take away a big chunk of my fun and my freedom. Worse than that, every time I have a blood count it threaten to take my life hostage. Single digit platelets change everything, and not in a good way.

So the CT and BMB are more to set the baseline for the treatment, not as in many others to determine the need for therapy.

That said, and I hope you are listening, Mystery of the Universe, if my bone marrow, G-d willing, turns up as clean as Mormon's liquor cabinet, and my nodes have shrunk to the size of a politician's conscience, I would have to say my clean living vegan raw diet, the Budwig or Zeolite magic, or everyones' most welcomed prayers or the psychic thrusts have finally kicked in, and I will glide a little longer or maybe forever.

If not, and my CLL is still rearing its ugly head, it will be show time, a call for action.

The nature and the exact timing of that next treatment step is not clear. What is clear to both Dr. Forman and myself is that the complete remission I should achieve with immuno-chemotherapy will most certainly be followed with a second more humbling transplant (a midi, not a mini - OUCH).

Like before my first transplant, despite my expectations to the contrary, I got no push back with my aggressive plan of action. Treatment and transplant, like love and marriage are locked together. Going for the cure. No wayward stations on my road to a complete healing.

This coming together of minds, Forman and me, is such a relief, a piece of solid ground is a shifting landscape.

I will seriously address in future posts my various chemo and immunotherapy options to get to that blessed remission, and my critical conditioning regime to avoid the rejection snafu of the last transplant adventure, but I am taking a few days off to care for a dear dear friend who is having a minor surgery for a broken finger.

And even before that I promised myself I would dedicate Dec 24-26 to writing my book.

Believe me, the book is for you, my friends and readers to help you get through the muddle that cancer or any life crisis can make of your reason, your gut, you life.

It will help me too to sort through this all, but the blog is light work, and Facebook is a non-contact event. Forget Twitter.

In fact, Facebook is as easy as slipping on the ice, and often about as graceful. Dashing off a blog post is a gentle slide on your bottom down a bunny snow slope. Fun and worthwhile, but rarely character building. Writing a book is a blindfolded run at a ski jump of Olympic proportions. It is courageous and lonely work. Writing is not a social activity, and I am a social creature.

These three days are critical for me to push my agenda forward. I have so many broad and wild imaginings that I know could help others with their lives in jeopardy, but I need to make my ideas real and accessible and fun.

That means no telephone calls, no emails, no tweets or Facebook updates, and no posts here.

Unless of course there is an emergency or an epiphany (it is the season). I am especially open to the epiphanies.

So Merry Christmas to all my friends who celebrate the special birth of the divine on earth.

And to my other friends, enjoying the return of the sun, and the time off.

See you in a few days

G-d bless.

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6 Comments:

Anonymous Hoiyin Ip said...

Very good post!
BTW Doctor Turned Nurse is much more appealing! Go for it! You have my full support.

December 22, 2009 at 10:50 PM  
Anonymous Anonymous said...

How refreshing and comforting to have a team of two!

Having just returned from a few days in Salt Lake City, let me assure you that liquid refreshments of any proof are easily had by all suggesting that all things are possible.

Regards for the coming holidays.

TomD

December 23, 2009 at 8:06 AM  
Blogger Sewing, knitting, quilting Grandma said...

A book! Way to go!
How helpful and exciting. You have a unique position as an educated patient who also is an MD.

I forgot to wish you Happy Hannakuh, so here it is.

I understand the need for isolation while writing.
Linda & Terry

December 23, 2009 at 7:01 PM  
Blogger Chonette said...

Brian, I wish you all the inspiration you need for your writing and have fun doing it, I look forwards to reading it sometime in the future.
I am having a DLI end January, things seem unreal somehow, also most like my SCT was a dream, I have also conidered to put my thoughts on paper but it does not feel as apealing as when I wrote my cookery book and had so much fun doing it.
All the best with your writing and also all the other test for CLL.

December 25, 2009 at 4:02 AM  
Anonymous Celeste Maia said...

At least you and your doctor are in perfect harmony, and that is a huge comfort.

I am sending best wishes for you and your writing to be in a state of perpetual Mozartian joy.

I am trying for clarity and structure with my doctors. When what I really want is life lived at a high pitch.

Wishing you the best for 2010, Celeste from Spain

December 26, 2009 at 10:51 AM  
Anonymous Jan Buskell said...

Kelly & I are proud of you, Brian. Imagine an old couple in beautiful Southwest Virginia cheering for you ...

January 2, 2010 at 2:10 PM  

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