Sunday, August 14, 2016

I have found the FAST FORWARD, but where is the PAUSE button

Us with our guides and safari organizer in Kenya

I returned stateside at LAX late Monday after leaving Nairobi on Sunday. Our arranged transport didn't show. In the confusion, I lost my favorite sweatshirt.

The next day I had three conference calls scheduled related to CLL or patient and medical education, my IVIG infusion, and lab draws for my local clinic with 9 more tubes for special testing being done at Mayo.

My car told me I had a flat tire on the drive to the clinic- I didn't, but the pressure was a bit low. Then the same thing happened with the van.

Most importantly, my blood tests done on Tuesday morning showed a significant left shift, something brand new for me, prompting a call from my local hematologist, Dr. Sharma to see if I was acutely ill- I am not or at least not knowingly sick.

In a left shift, immature blood cells are released prematurely from the bone marrow into the blood stream. This is usually a response to an infection, but can be a sign of a secondary blood cancer.

Also in a potentially foreboding development, my absolute lymphocyte count jumped above normal for the first time in many many years. And my LDH, a chemical marker of active inflammation or tumor activity or worst, was above normal.

Something is clearly going on. But what is it?

I have to follow my own advice and will simply wait to see if it was simply an abnormal blip in response to the extraordinary stress of my recent travels and jet lagged status, or was it the beginning of some new trend. Lab work will be repeated at UCSD at the end of next week. Until then, I refuse to worry.

Next I got home to find a bill for almost $5,000 for my prior IVIG infusion, the same infusion at the same place (my own medical group's cancer center) at the same dose that I have been getting for nine years now. What's changed?  More hassles to deal with. I am sure it too will all work out. It's got to.

And it turns out that I have not been getting paid for my work at my family medicine clinic for a long time despite working more hours than I have in years. This I am told is due to a book keeping snafu. It also will all work out, sooner rather than later I hope.

I have never been paid at the nonprofit as we need all our cash for programming. Hopefully that too will change as our community continues to grow.

in a spare moment, I argued with Amazon but was eventually able to returned for a partial refund the brand new but defective Nikon camera bought specifically for the trip.

Next month the CLL Society is starting direct peer to peer counseling for hundreds of fellow patients monthly with over a dozen volunteers and everything has to be encrypted and HIPAA compliant.

In September, we are also jumpstarting and organizing several support and education groups all across the country.

The list of the things that need to be sorted or fixed and not worried about goes on and on and on.

I have found the FAST FORWARD, but where is the PAUSE button? I would love to be languishing in the afterglow of the safari, but it was not to be.

Life is still sweet even it is a bit too fast.

Cheetah Mom with Her Pups
(lovely photos courtesy of our fellow traveler Chris-
we have no time to sort our photos)

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Blogger E. Kostich said...

I see the prospect of another blog, "The adventures of Brian in the bush." ☺

August 15, 2016 at 7:34 AM  
Blogger Lis Wright said...

Wonderful story. The "little" things will sort themselves out. The others are what matter. Safaris are life changing experiences.

August 15, 2016 at 8:16 AM  
Blogger Keepersprings said...

Have been following your posts for a couple of months and love it.....Thank you, Thank you and thank you......just diagnosed with CLL....In "Watch & Wait" mode. Will take your advice and "Refuse To will work out!"...Blessings, keepersprings

August 15, 2016 at 8:58 AM  
Blogger Unknown said...

so hoping all will turn out ok. Thinking of you

August 15, 2016 at 9:52 AM  
Blogger Marcia said...

I could tell you a long story about what might affect outcomes, but you don't have time for it. Suffice it to say that you have been exposed to hundreds of new microbes, etc. no matter how careful you were, and I would be more concerned if you saw NO reaction from your lymphocytes. Yes, it will work out.
Marcia Weinhold

August 15, 2016 at 5:53 PM  
Blogger Eileen B. said...

You have given so much to us all. I am deeply grateful. All will be well, all manner of things will be well.

August 16, 2016 at 5:33 AM  

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