Happy Summer!
We hope you are doing well. We invite you to like our Facebook page, The National Bone Marrow Transplant Link. Check out our new Podcast Season 6, located on the home page of our website. (nbmtlink.org)
To the left, check out our new 2nd Birthday postcard. (More below on how to get yours!)
And we REALLY love to hear from you! Tell us what subjects you'd like us to cover for our monthly Lunch & Learns. Email info@nbmtlink.org.

Nuances of a New Normal
By David Weinstein
(Third blog)

“Support was next to me and also on my knee,” said David seen here, with his son and transplant nurse. 

Papers signed, invitation to move into University of California, San Francisco (UCSF), 11th floor oncology accepted, bag packed. Drop off my son at school and I’m on my way. 

This was an act of blind faith. I asked detailed questions of everyone involved to this point, and always had someone with me who was less caught up in the emotions and drama, to take notes and be my ears. The detail I wanted and was able to understand was not forthcoming. I think many of the practitioners I encountered were under the false impression that patients cannot comprehend or do not want to grasp anything beyond the basic synopsis. It will hurt. It will not hurt. 

I want all the details, in blunt, graphic clarity. Repeatedly. Ultimately, this became an understanding between my caregivers and me. It is my body, my life and my process to engage in as deeply and completely as I choose.

This first stay at UCSF was to be for five weeks. I quickly learned that one of the aspects of being treated at a teaching hospital is that you are often the subject for teaching. I also discovered that if an intern was learning to insert a line into a large vein in my groin and they messed it up twice, I could ask them to stop and watch the supervising physician do it properly. 

It is critical to point out here that the grace and dignity shown by all involved was never lacking. I was surprised at just how much empathy was expressed by the nervous interns who knew they were learning on my body. The amazing nursing staff understood as well. Humor is a great pacifier and equalizer.

Temporary port installed. Apheresis machine hooked up and we are ready  for two days of blood cleaning. I felt like a set of hydraulic brakes being bled. Hours of sitting around connected to the machine talking with whoever was running the operation. 

My genetic sequencing had not been done yet so a true diagnosis was about two weeks away. We knew that regardless of the details in the diagnosis, cleaner blood was a life-saving necessity, as would be the chemotherapy and full-body radiation, to arrest all of the cancer activity and allow for a bone marrow transplant (BMT). 

Once apheresis was complete, I received a long-term tri-port in my chest. This was a gift because one’s veins quickly learned to hide from incoming syringes.

When I considered the source of my greatest fear and concern about the parts of the protocol I was beginning to experience, issues related to my lungs and breathing were absolutely at the top of the list. In part, it was because I’ve always been an athlete and well-tuned to my breathing and its limits. I knew I was going to spend 45 minutes each day for two weeks in a hammock, hanging in a concrete and lead covered subterranean room, being bombarded by invisible waves designed to destroy living cells. This process was not aimed at a specific tumor. I was the tumor. They were going to radiate all of me. 

I needed to remove my psychic resistance to the effects and quell my fears as much as possible so some kind of optimistic view could help allow a positive outcome. What benefit could there be to fight this tool that is designed to help me live? 

So I named the radiation machine. I gave the radio waves a color and a personality. I made friends with it. I greeted it when we met every day. I thanked it when we were done. This tactic was facilitated by visual imagery.

Goofy? You bet. Maybe a bit too tie dye/Birkenstock for some people? Sure. But it worked and the anxiety dissipated. When I was not having my daily encounters with the radiotherapy machine, I was receiving intravenous chemotherapy. Initially there were no side effects from either. But after a few days accumulated, that changed radically. Thank science for strong and then stronger pain medications. 

More on that reality and the latest in recommended hospital room decor in the next BLOG.  
Editor’s Note: If you would like to reach out to David after reading this blog, you may contact him at Daweinstein@sbcglobal.net
To view his ceramic work, please visit htpps://daweinstein60.wixsite.com/muddworks

Lunch & Learn
with the LINK

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

Wednesday, August 18th
Noon EST (one hour)
(Please adjust your time zone accordingly.)

Special thanks To Our Sponsors: 
The Leukemia & Lymphoma Society, Incyte Corporation, Pharmacyclics & Janssen
and Omeros Corporation 
We also thank our Esteemed Link Partners, listed at the end of this newsletter.

Cancer Survivor’s Guilt, Negative Feelings and Despair Addressed 
This month's telephone educational and support program will focus on survivor's guilt, the anxiety you may feel when a peer passes away as well as how to handle well-intended positivity if you are experiencing negative feelings and despair. Shirley Otis-Green, MSW, MA, ACSW, LCSW, OSW-CE, FNAP, FAOSW of Collaborative Caring will break it down for us. Two time bone marrow transplant recipient and survivor Bridget Casey will share her personal experience and some valuable lessons learned along the way. 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. (www.nbmtlink.org)

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 peggyburkhard@nbmtlink.org or call (248) 770-5172. Note: YOU call in to participate.
(We do not call you.)

Join the Celebration!

We have a NEW 2nd Birthday postcard and we hope you love it as much as we do.

To get yours each year, send an email to Cindy Burke, cindyburke@nbmtlink.org.

Help us Celebrate YOUR Important 2nd Birthday.

How We Help Others!
We are a phone call or email away for patients and their loved ones.
Patients, caregivers and health care professionals are amongst those we aim to help.
We cannot do it without the support of corporations, foundations and individuals like you!

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