Sunday, November 6, 2011

You give me reason to live, you give me a reason to live, you give me reason to live!

My daughter and granddaughter in the California Redwoods

Patty and I went on one of our best trip ever. It wasn't exotic China, not romantic Italy, not Zen Japan, not super natural New Zealand, not historic Prague or musical Vienna or friendly OZ, not ancient Israel and Egypt, not the castled United Kingdom, not magical Peru, not the grand Grand Canyon, but gritty occupied Oakland because that's where my daughter, son-in-law, and granddaughter live.

That young lady with the pink bib in the picture is another reason to soldier on.

I have no bucket list. As I have said before, I have way too much joy in each day and way too many things left undone to imagine that a list of the top 10 or top 100 or 1000 checked off would signal it's OK to check out.

But seeing that four month old under the marriage chuppah might be a moment when I can say that I have seen enough.

Nah, make that holding my first great grandchild. I should be in my 90s or close. If I live long enough to see that baby's bat mitzvah, I would be around the century mark.

In any case, CLL would be a remote memory. What a blessing that would be.

But now CLL is front and center. Tomorrow I have my MRI to see if my CLL is trying to launch a sneak attack from inside enemy lines, my mesenteric or gut nodes. If they have grown too big despite another course of rituximab, I need to knock them back to size while I still can. If they become "massive" ( >10 cm) they become harder to kill. In these large niches, they have more supportive infrastructure such as nurse cells and they are just tricker to reach with what ever toxic cocktail I have planned for their last meal.

That means choosing a new treatment strategy that keeps one eye on my ITP, and another on my sleepy bone marrow and my third eye on a future transplant redux- probably my only chance to live long enough to see a fourth generation.

I wish there was another way, but I am not convinced. Kinase inhibitors such as CAL 101 or immunomodulators such as Revlimid might buy some time, but not a cure. They don't promise me another 30 years. Only a second transplant gives me a 50/50 shot at getting really old. But a transplant demands a big price for that shot of redemption and a second transplant demands even more.

I have been catching up on hours and hours of reading about my disease and transplant. CLL remains thankfully a hot research arena. Much is changing fast, but is it fast enough? I doubt it, at least for me and those of us who might need treatment soon.

Those who have followed me on some or part of my six year journey know this is a repetitive loop- my anxiety before a scan or bone marrow biopsy, my cogitation over my next move, my lament about the slow progress and the constricted choices, and my hunger for life.

Thanks for joining me on the trip. The CLL community and others facing similar challenges are among the many gifts in my life

I've got too many reasons to live and one very young, and beautiful new one.

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Anonymous Anonymous said...

Thinking of you as you undergo your scans tomorrow. Your blog words say what I feel in my heart. Thank you for posting and sharing your knowledge about your journey and CLL. Brenda
Watch and Wait
Dx October 2010

November 6, 2011 at 7:29 PM  
Anonymous Anonymous said...

Baby is beautiful; enjoy!
Good luck with the scans tomorrow

regards from a very mild London Town

November 7, 2011 at 6:21 AM  
Anonymous jcleri said...

What a beautiful reason to live.......she is adorable and she needs her Grandpa so keep and keeping on. Glad you had such a great time. Prayers are coming your way as you under go your MRI.



November 7, 2011 at 7:00 AM  
Blogger Sharon Halsey-Hoover said...

Praying for you, Brian...wanting to help you carry this load in whatever way we still needs you.
Sharon and Davaid Hoover

November 7, 2011 at 7:17 AM  
Blogger Sharon Halsey-Hoover said...

Praying for you, Brian...wanting to help you carry this in anyway that we can. The world still needs you and your specialness..
Sharon and David Hoover

November 7, 2011 at 7:19 AM  
Anonymous Anonymous said...

My first grandchild was born a year after my CLLdiagnosis. Now she is sixteen and there are three more--four of the best things in my life. I'm pushing 80 so I don't expect to see the next generation.
Your blog is a wonderful resource. Thanks for all your insights and I hope for the best possible test results.

November 7, 2011 at 8:09 AM  
Blogger Brenda Corderman, MA, LMFT, Brea, CA said...

May all your tests reveal good news! We're rooting for you!

November 7, 2011 at 8:20 AM  
Blogger Dragon Slayer said...

Your beautiful granddaughter is reason enough to fight the fight. Somehow I think you and she will bee close buddies.
All the best

November 8, 2011 at 9:44 AM  
Anonymous Janet Morrison said...

The little treasure -- your beautiful granddaughter -- is worth the fight. Praying you have all that your heart desires.

November 11, 2011 at 7:42 PM  

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