Happy September!
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!)
We also have a new webinar to tell you about on Thursday, Sept. 23rd at NOON EST re: Clinical Trials.


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


  
David seen here with his requested cheese sandwich = 8 oz. of American on dry (stale) bread. Say Cheese!
 
The last entry left off with the lurking problem of chemotherapy and radiation side effects related to soft tissue cell sluffing and mouth, gum and throat ulcers. This was a delightful experience that certainly fits the top most painful challenges during the entire process. Fortunately, there are extremely powerful pain medications that make it more tolerable. I was so unwilling to resort to a feeding tube that I learned how to time the pain management tools with eating so that I was able to sustain myself during the couple of weeks when this happened. 
 
It doesn’t take long for the brown-green mush that is conveniently labeled broccoli or zucchini or peas or beans coming out of a hospital kitchen to have a depressing effect. It occurred to me that while the chemo was killing my malfunctioning immune system, the hospital kitchen was doing the same thing to the cellular tissue of anything they served. Fortunately, there are many foods that can be safely brought in and consumed while undergoing treatment. I asked for a flow of those items so I had something to look forward to. Yogurt was a big one.
 
Ben and Jerry’s Chunky Monkey Ice Cream belongs in a formulary, and here’s why. There was a period of time when I developed hiccups that lasted 24/7 for about ten days straight, for which no medical intervention worked – until someone brought me a pint of Chunky Monkey. After a serious dive into the container with a tablespoon, the hiccups vanished and never returned. Yes, I did write them a letter.
 
On the day of my transplant, I decided that it was actually my birthday, or my re-birthday. Though some coaxing was necessary with the more conservative or straight-laced practitioners on my floor, I made it clear that anyone coming into my room that day was required to wear a party hat. My son and I made the hats out of masks, obviously to be worn on heads, not faces. As with the choice to make friends with radiation and the machine that produced it, this process required some positive forces as well.
 
Ultimately, when the BMT had started and was beginning to take, but with a few more weeks of inpatient status remaining, my dear friend would bring dinner in once in a while, always fully cooked and frequently from Indian or Asian restaurants. Sustenance that has distinct flavor, is a color other than brown, and with texture other than mud, is a true gift. 
 
When twice spending over a month as an inpatient, without much safe social connection because of infection vulnerability, room decor was a big deal. I know it may sound like so much fluff, but if you’re sequestered in a boring, depressing space that has only the basics of off-white paint, linoleum floors and the perpetual scent of industrial cleaning products, you have to do something.  
 
Ultimately, the room I inhabited for the initial five weeks was completely plastered with the cards, banners, photos, calendars and artwork done by certain friends and family, complimented by the get-well messages created by my son’s class at school. I still have most of it. When all else fails, decorate and use copious quantities of scotch tape. There is nothing like the love delivered by a group of second grade kids when they know you. I think the medical staff would agree that it enhanced the effectiveness of their protocol.
 
Next - BMT works, albeit with some GVHD. Release!
 
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, Sept. 15
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.

This month, as we recognize Pediatric Cancer and Blood Cancer Awareness Month, this call-in educational support program will focus on updates and innovative treatments as they relate to blood cancer diagnoses in adults and children. Dr. Maria Luisa Sulis is an oncologist specializing in lymphomas and leukemias at Memorial Sloan Kettering Cancer Center who will share her expertise. As well, a parent to a pediatric patient will share his/her experience, best tips and coping skills. 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.)
Bone Marrow/Stem Cell/Car T Transplant Clinical Trials Explained and Examined:
Why It’s Important to Consider Them
 
Thursday, September 23, 2021 
Noon to 1:30 pm EST 
Note: start time will vary by time zone
 
We invite you to participate in a FREE webinar that will help you and your loved ones better understand the complexities and reasons to consider a transplant clinical trial, and what they are all about. Two survivors will share their life-saving stories, sure to inspire. 
(Caregivers and the medical community are also invited to join this webinar.)
 
Dr. Asif Alavi, Assistant Professor, Clinical, Hematology-Oncology, of the Barbara Ann Karmanos Cancer Center will share his professional expertise on clinical trials and why they are so important. Abbey Fueger, BA, BSN, RN is a Clinical Trial Nurse Navigator with the Clinical Trial Support Center of The Leukemia & Lymphoma Society and will help us better navigate clinical trials. This webinar will be facilitated by Jennifer Gillette, our licensed staff social worker. Additionally, Mike Ansley and Ray Gillespie, both survivors, will share their incredible personal life-saving experiences with multiple clinical trials. There will be time for questions and answers following the presentation.


This program was made possible by the generous support of:

Join the Celebration!

Survivors, let us help YOU celebrate your 2nd birthday—your second chance at life! The National Bone Marrow Transplant Link would love to send you a free, Celebrating 2nd Birthday Postcard annually, to be received in the month of your transplant to acknowledge your transplant anniversary! Sign up today by emailing your name and home address to cindyburke@nbmtlink.org. Wishing you many more healthy and happy birthdays to come!

How We Help Others!
We are a phone call or email away for patients and their loved ones.
info@nbmtlink.org
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
DKMS 
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