Nuances of a New Normal
By David Weinstein

David, seen above taking in the endless colors and smells and so grateful to see them.

We’re so thankful and honored to present the following seven part blog series. David Weinstein shares his heart, grit, soul and bone marrow transplant journey with us as we roll out this series, once a month, here in our E-nnouncement newsletter, starting this month. Each blog post will inspire you regardless of where you are on your journey. So sit back and feel the sun on YOUR face as you soak up this very special series. Thank you David. You are a gift to this world.

Before the Beginning of My Transplant Journey 

I was an exceptionally active person, physically. A typical weekday would begin with a six- or seven-mile run at 5 a.m., followed by a gym workout before coming home to eat and shower; then I went to work. It is certainly safe to say that the running was obsessive because I did it no less than six days a week, regardless of weather, and I felt noticeably disconnected when I did not run.

At some point in early 2004, I decided to enhance my exercise routine to include a lot of weights and resistance training. The result was that I was outgrowing my clothes and eating constantly, in healthy ways, to keep the caloric intake balanced. 

In the fall of 2006, I started to notice that I was feeling tired early in the day, with a depth of fatigue that was completely unfamiliar. At first it was subtle and inconsistent; but over a few months, the wall of exhaustion would appear very early in the afternoon. Often, I would stop working by 1 p.m. or so. Around that time, I found that I was losing the ability to maintain sufficient airflow while running. No matter how hard I breathed, I felt an absence of oxygen being absorbed. I started walking home from my runs, cutting them short; something I had never done before. 

Unwilling to consider even looking at any health problem as a cause, I simply decided that I was too active and needed more rest. Obviously, this was completely true, but was due to more specific reasons and causes than I realized.

I remember one afternoon coming home from work early again, sitting on a couch watching TV and nodding off at 2 p.m., thinking that consulting with a nutritionist would be my next step. Of course, I’m in great physical shape so my body must not be getting enough of the right kinds of fuel. That had to be the problem and the implied solution.

Most of what I just described was hidden in varying levels of denial. The science that preceded my being diagnosed with Biphenotypic AML/ALL was invisible to me when it was taking form, because I was unwilling to accept any explanation that was not related to what I believed was happening. It wasn’t until I was well into treatment that I reflected on the previous few years to see how earlier lifestyle choices and activities may have played a part in my denial and helped delay recognition. It is vividly clear that in this situation, as many might agree, an obsessive behavior can act as an opaque screen that blocks the truth and reality within the circumstance. That is a learning opportunity, if there ever was one. 

At some point in the next couple of months, I had the appointment with my internist to confirm this theory and receive the instructions needed for the solution. I had absolutely no clue what she was about to discover. It was at that appointment for the “standard annual physical” when my blood work was completed, alerting the doctor and me to how sick I was. I remember her telling me on the phone as she tried to convince me to prepare to be treated for a dangerous disease, “Your healthy white blood cell (WBC) count should read around 3,000 to 4,000 but it shows 272,000 today. You shouldn't even be awake or on this call.”

So, that was the very early stage of being in acceptance rather than remaining in full denial. 

Next blog in July - Full diagnosis and a recipe for survival.

Editor’s Note: If you would like to reach out to David after reading this blog, you may contact him at

David, seen below enjoying his passion in creating ceramics.

Lunch & Learn
with the LINK

A Telephone Support Program for Patients,
Families/Caregivers/Loved Ones

Wednesday, June 16
Noon EST (one hour)
(Please adjust your time zone accordingly.)

Everything You Need to Know About CAR T-Cell Therapy

Special Thanks to Our Sponsors:
The Leukemia & Lymphoma Society, Incyte Corporation, Pharmacyclics & Janssen, Omeros Corporation and Bristol Myers Squibb
We also thank our Esteemed Link Partners, listed at the end of this newsletter.
This month's telephone educational and support program will focus on all things CAR T-cell Therapy. Dr. Lawrence E. Morris is a board certified oncologist at both the Northside Hospital Leukemia Program and Northside Hospital Inpatient BMT Unit, and the Apheresis Collection Facility Co-Director of Atlanta Blood Services. Dr. Morris will break it down for us and share his expertise. CAR T-cell patient, Ray Gillespie, an NHL survivor, now in full remission will share his personal experience including details about his life-saving clinical trial. The nbmtLINK's licensed staff social worker, Jennifer Gillette, will facilitate the program. There will also be plenty of time for live questions.

This FREE program is intended to provide psychosocial and emotional support along with health information from national experts regarding critical topics surrounding cancer and treatments. This program is recorded and available on our website one week after airing live. (
Registration (FREE) is Open!
To register for this Lunch & Learn, please click above, to access the quick registration form.
The form contains the call in details needed.
If you have any technical issues related to registering, please contact or call (248) 770-5172. Note: YOU call in to participate.
(We do not call you.)

In case you missed it!
Our new GVHD book is printed and ready to share!

Graft Versus Host Disease Living with the After Effects of Bone Marrow/Stem Cell Transplant, in its second edition as seen below will help patients suffering with GVHD better understand this rare disease. Novel therapies, treatments and resources are updated. The foreword is written by Dr. Steve Pavletic of the NIH, a subject matter expert and each chapter is written by top health care professional experts in the field

We are so excited to share this updated book with you today.
Reduced price and great bulk rates apply.

How We Help Others!
We are a phone call away for patients and their loved ones. From one on one peer support to scheduled call series and webinars, we are ready to ease your burden.
Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.
We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.

Special thanks to our Esteemed Link Partners, listed below, who make everything we do possible through their support.

Link Partners include cancer centers and allied partners who annually support our mission of providing psychosocial support to patients, caregivers, their families and health care professionals dedicated to helping people navigate a bone marrow transplant. If you would like to learn more about the many benefits (books, programs, hyperlink on our website, bookmark inclusion) to being a Link Partner, please do not hesitate to contact us at (248) 358-1886.

American Society for Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Institute
Blood and Marrow Transplant Program at Northside Hospital
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope
Dana-Farber/Brigham and Women’s Cancer Center
Froedtert & the Medical College of Wisconsin Cancer Network
Henry Ford Cancer Institute
Incyte Corporation
Memorial Sloan Kettering Cancer Center
Meredith A. Cowden Foundation
Nebraska Medicine
Oregon Health & Science University Knight Cancer Center
Roswell Park Comprehensive Cancer Center
Seattle Cancer Care Alliance
Siteman Cancer Center at Barnes-Jewish Hospital/Washington
University School of Medicine
Spectrum Health Cancer Center
Stem Cell Transplantation and Cellular Therapy Program, John Theurer Cancer Center at Hackensack University Medical Center
The Leukemia & Lymphoma Society
University Hospitals Seidman Cancer Center
Vanderbilt-Ingram Cancer Center