Sunday, August 21, 2016
Sunday, August 14, 2016
I have found the FAST FORWARD, but where is the PAUSE button
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.
Tuesday, August 9, 2016
Reflections on Risking a Safari in Kenya when Fighting CLL (chronic lymphocytic leukemia)
- Craziness? Maybe.
- Risk taking behavior? Of course.
- Saying no to cancer saying no to me? You bet.
- A carefully calculated gamble that turned out amazingly well? Absolutely.
We were met at the airport and whisked away to the elegant colonial era Muthaiga Country Club for lunch. Nairobi traffic is infamous and street hawkers hang on to the car at every stop which are frequent and lengthy, but we never felt threatened.
Sunday, August 7, 2016
Guest Post from Betsy while we are in Kenya on Safari
Wednesday, July 20, 2016
Dr. Furman on genomic testing and MRD negativity in CLL (chronic lymphocytic leukemia)
I am going on radio silence and am writing this from the airport in Qatar so please don’t be upset or worried if I don’t respond to questions or comments.
Betsy Dennison, an oncology RN and NP who handles our website will be posting some interviews from ASH and EHA while I am gone. Today she put up this pretty cool one with Dr. Furman that really explains the different types of genomic testing and the changing importance of MRD- in the era of new therapies.
I must admit for a world traveler, this trip to photo safari in Kenya has me worried. It is a long way aways and it is a long time gone in a poor and dangerous country in some areas with all kinds of disease that are not a concern here
Once I am there, all should be well. I hear that at the tented safari camps, all is calm and secure if still noisy from all the nearby animals.
Clothes are sprayed with permethrin, I have a ton of DEET and it is not mosquito season. I will take Malarone. Kenya does not require a yellow fever vaccine and risk is very very low and Typhoid can be given as a killed vaccine.
I am staying away from salads and fruit drinks- that will be hard, and bringing a ton of emergency meds (cipro, immodium, Z-Pak, prednisone, pain meds, anti-histamines, suture kit, disinfectants, and an extra week of all my daily meds including my ibrutinib.) Sunscreen, N95 masks and hand-sanitizer too.
And I won’t feed the lions, or monkeys or swim with the hippos.
I look forward to catching up when I return.
This is the first trip in years where CLL has not been at the top of the agenda, and where internet is iffy at best.
We are all in this together.
Sunday, July 17, 2016
Short and Sweet News: Less CLL (chronic lymphocytic leukemia) cells in my blood than 90 days ago
The absolute number of my B cells where my cancer lives dropped by almost 1/5 in the last 3 months from 246 to 216 after slowly climbing over the last year and 1/2.
This is a very welcome and somewhat unexpected finding.
I am planning on it being the start of a new trend in the right direction.
4 plus years on PCI-32765 AKA ibrutinib and counting.
Only time will tell if my resistant sub-clone and with it my CLL is truly shrinking, but the climb has stopped and that is reason to be celebrate.