US 1 Newspaper, February 12, 2020
I’m happy to report I am moving foward the second month of the mysterious, baffling, processs known as a stem cell movement. The basic idea is to find out what I need to survive without the systems I arrivded in the world with, since they’re all gone now. For instance, I arrived in life as a blood type A Negative. And did so for 75 years. Now I am an A Positive. Go Figgur. So there is much to be learned.
Today the news was mostly good. More white cells are on the rise, which is a hopeful sign of maybe engraftment. Fingers crossed! More news every day.
In gratitude towards all,
Sarah and my first cousin and oldest friend Christine Jones today at MSKCC
“In a way, today is your first birthday,” That’s how one member of the transplant team gathered in my hospital room put it today during the brief ceremonials around a watershed moment in my treatment. After a presentation of the donor cells, and a few words of thanks on my part to the doctors and nurses and my family, they turned on the switch and the frisky new stem cells started to arrive via a simple IV bag.. May they flourish and multiply.
This is a fascinating display of biomedical science — I hope to use the opportunities it presents wisely.
Here I am in my beautiful room on one of two transplant floors at MSKCC on Day -1 on my transplant journey. So far the story has been preparing me to be a polite host to the bumptious, young stem cells whom I will welcome tomorrow in the form of a simple transfusion. But the whole transplant team will assemble for the occasion, which speaks to their professional sense of shared responsibility.
Today is my single “day of rest” after four days of intense chemotherapies and other medications that are pretty much as predicted — rough. I take inspiration from the many women I know who have undergone similar treatments for their own cancers. We are lucky to have our family nearby, as well as many friends on this road with me.
After the transfusion itself tomorrow, my job is to avoid bacterial and viral infections, of whatever kind, and encourage the new stem-cells to engraft themselves and not to develop the scary graft vs. host disease.
If all goes well, Sarah and I will move into an apartment owned by MSK just a few blocks from here on May 6. We will be able to see friends and family there — but, alas, only there, since restaurants, parties, exhibits, plays, etc. all all verboten because of risk of infections.
Much love to all of your for your expressions of support, which make a diference every day.
The theme for today is Panicky Packing. They want me to check in at MSKCC at 10 am tomorrow, which in their dramatic fashion they call Day -5. The chemo starts tomorrow night — Fludarabine. I get that until Day -2 when they add Melphalan. Then after my immune system is pretty well wiped out by the chemical carpet bombing, with nothing green growing, I get the transplant itself on Day Zero. It is not surgery, as many people think, but a transfusion of stem cells from an anonymous donor. Then the process begins to help these little fellows thrive and multiply — and to prevent the dreaded Graft vs. Host Disease.
I am optimistic, thanks to our very professional Transplant Team and especially to the amazing support I receive from my wife and so many friends and family. I was not ready for that, and it is quite moving. I will miss all of them, and my dog Louie, who is filling out the forms to be admitted as a support animal.
I am loaded up with books and music — thank you for the recommendations! — and my first-ever set of over-the-ear, noise-canceling bluetooth headphones from Bose. Will be tuning in Monty Python as soon as I can.
My check-in day for the stem-call transplant is rapidly approaching — it’s next Friday, April 12. So it’s time for me to warm up this blog for my first entries. The doctors at Memorial Sloan Kettering have given me a calendar with the sequence of events displayed clearly — if somewhat melodramatically. April 12 is Day -5. Then five days later, after intensive chemotherapy, Wednesday April 17 becomes Day Zero, when I receive the actual transplant itself. It’s a transfusion, not a surgery. The idea is that they have blasted my immune system totally in the five preceding days. It’s like leveling a battlefield with bombs before an invasion. My WBC count will be zero. The stem cells then arrive and, we hope, proceed to engraft themselves and thrive and multiply.
Fingers crossed. My friends and family been wonderful to me, the real reward of this experience thus far. I will be in the hospital for about 28 days, followed by 8-10 weeks of house arrest with Sarah in an apartment owned by MSK in New York. I can’t leave unless I wear a mask and gloves, like some kind of highwayman.
I also will find out whether “chemo brain” is the real thing, or just what people say when they forget something.
As we used to say at People, MORE TK …
As many of you know, I am checking into Memorial Sloan Kettering Hospital in New York on April 12 in order to have a stem cell transplant. The idea is do away with my myelofibrosis, a bone cancer I have had since 2011. So I am setting up a blog now — my first! — to keep a record of this experience — and to spare my wife Sarah the need to update everyone, one at a time, all the time. I will still post articles, etc. on the website, but the medical stuff will be in the blog. So please watch this space — and I promise not to abuse the privilege, or your patience.
this is a test for the new blogging feature
Thalidomide and Me
MPN Research Foundation
10 March 2017
America Is Forgetting Its Own History
by Landon Jones
February 14, 2017
America Loves a Con Man
by Pia de Jong and Landon Jones
Time.com – Time Ideas
January 31, 2017