Walking (two)
It is not always easy to move into the present.
That is what Dr. Rai is suggesting.
He is firmly pushing me to LIVE, and forget about the gut nodes, until I have symptoms. Then move hard and fast. But until then, get a life. Heck, I have normal blood work, normal marrow, and no palpable nodes. I would pass a thorough insurance physical, unless they did a CT. So why not enjoy this reprieve, this remission? Why force the game before I need to?
That is a sea change. Its implications are becoming clearer to me walking along the shoreline, aside the ever changing, ever constant sea. It would mean that I would no longer be preemptive. It says to me to stop planning the next three steps. It asks me not to be hypervigilant. It asks me to forget the CLL, until when or if I get a wake up call.
Can I do that? Can I do what Kabat Zinn suggests: meditate, act and be aware? Can I move into the moment? Can I let go?
Time will tell.
"Time is not a line, but a series of now points." -Taisen Deshimaru
So true. So hard.
posted by Brian Koffman at
10:35 PM
5 Comments:
Still with you, Brian. You have your family and friends around you with much love. Keep them close - and you have to do what you think is right for you, (with the best advice you can get about CLL). It will be hard but I can tell you have a very strong will. Maybe take some time for a while as the NY doctor suggests.
Hope you find that balance, middle ground or compromise. Do not be too hard on yourself.
There is a message in your writing for us all...move into the moment and live life. What a mantra for each morning to consider. I hope the springtime brings new life and hope.
All the best
Doc...
I feel ya! But why does it have to be either or? Isn't it about balance (LIFE and CLL)and making sure that whatever you decide to do, you can do it with "no regrets"?
I agree, you are pretty hard on yourself. Take a deep breath and LIVE (and monitor those nodes at appropriate intervals).
xoxoxoxo
Lezlei
I am sort of in the same position as you, in that I feel pretty good. However, Dr. Kipps has not told me to forget about my CLL. In fact, I'm waiting with trepidation for my bone marrow biopsy results. I expect bad news since my blood work shows persistent low platelets, low neutrophils, low WBC, etc. However, my hemoglobin count has returned to near normal, for which I am grateful. No more blood transfusions for now. (No, I wouldn't pass a physical, unless they didn't do a blood test.)
A while ago, I tried to imagine my life without CLL. I couldn't. It's as if one tried to imagine the night sky with no moon, ever. Or living on Venus. Just as impossible. That's a sad thing, but it's reality. This is a fatal cancer, and at 58 I feel way too young to die.
I've lived with CLL for over 10 years now, so you can imagine how impossible it is to imagine life without the disease.
I'm glad to see you are doing relatively well. May it continue for another 50 years!
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