Welcome to the May 2020 edition of our nbmtLINK
We know this is tough, but so are you. Take a coffee break and curl up with our special guest blogger, Brad Stulberg. You'll be glad you did.
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Stay Patient and Keep Showing Up It's All
We Can Do

By Brad Stulberg
Author of  Passion Paradox   and  Peak Performance  

A little less than three years ago  I was quite sick   for eight months. I struggled to have more than two decent days in a row, and often it was more like two decent hours. During this period it seemed like my situation was going to last forever. The hours felt like days and the days felt like months. It was hard to see any way out.

Fast forward to today and, looking back, those eight months don’t seem like such a long period of time. I actually remember them as a smaller speck. A very hard one? Yes. But an everlasting one? No.

My experience is common.  Research   shows that when we are in the midst of challenging experiences our perception of time slows immensely. But when we look back on those challenging experiences, they seem to have passed quite quickly.

This change in perception occurs because during struggles each minute tends to be filled with distressing thoughts and feelings. Called the “decompression of time,” this makes each minute feel longer, since more is happening in each minute. Our mind-body systems are on overdrive; they are thinking all the thoughts, feeling all the feelings. 

But when we look back on challenging periods, we remember them not as second-by-second moments of distress, as we experienced them, but rather as broader chunks of time. As such, they don’t feel as devastatingly long. If anything, they feel more like small moments.

We also tend to remember experiences based on how they felt at the end. Coming out of a struggle, be it internal or external, you are, well, coming out of it. Those last few not-so-bad memories, or even better, moments of relief, tend to be what sticks.

The implications are as follows

When we are in the midst of struggle and suffering, our first and foremost job is simply to get through it with as much grace and grit as possible. What feels like forever now won’t feel like forever later. We need to keep showing up and doing the best we can. Even if that means asking for help and barely getting by. Sometimes that's good enough.

Secondly, we’d be wise to try to  compress  our experience of challenging periods. This often means less thinking and worrying about something and more taking action, more doing. There’s a reason that  behavioral activation —science speak for simply getting up and doing something—is so powerful in treating depression. It can be helpful to reflect on your core values, or the things that matter most to you in your life, and then focus on spending your time and energy acting on those core values.

Will this strategy fix all of your problems? Sadly, no. But it  will  give you the chance of feeling a bit better, and that's worth something.
Regardless of what may be causing your distress hold on to the fact that what you are feeling is real  AND  there's a good chance it won't seem so all-consuming in the future. Be kind to yourself. Be kind others. Try to act in alignment with your values. And keep showing up, one day at a time. It’s as simple—and as hard—as that.

Lunch & Learn
Wednesday, May 20
(Please adjust your time zone.)

  Managing Oral Health Issues Before, During and After a Bone Marrow/Stem Cell Transplant with a Focus on GVHD
This free one hour audio call in program will cover many oral issues, including the special needs of Graft Versus Host Disease (GVHD) patients post transplant. Jacqueline W. Mays, DDS, MHSc, PhD, Chief, Oral Immunobiology Unit, National Institutes of Health will address the oral to dos pre-transplant, special care of the mouth needed as a cancer patient, signs you need to see a doctor and more. As well, Cathy Spence, a patient will share her personal experience. There will also be plenty of time for questions. 
To register for this Lunch & Learn, please click below on the link. If you have any technical issues related to registering, please contact [email protected] or call (248) 770-5172.The call in information is contained in the form you use to register. Note: YOU call in to participate.

Do you Have an Upcoming
Birthday or
Transplant Anniversary/
Second Birthday?
(If you would like to receive a fun Second Birthday card, please email [email protected]. We will be happy to add you to our list.)

Want to support our efforts to help other patients and caregivers navigate this journey?

  COVID-19 Emergency Food Assistance Program,  designed to keep immunocompromised patients safe during the COVID-19 Pandemic.

This comprehensive program brings together the unique offerings of Team Rubicon, a nonprofit organization that serves communities by mobilizing veterans to respond to natural disasters and humanitarian crises, and Patient Advocate Foundation (PAF), a national nonprofit organization that provides case management services and financial aid to patients with chronic, life-threatening and debilitating illnesses to provide access to food for patients with a current cancer diagnosis, multiple sclerosis or rheumatoid arthritis who experience difficulty accessing food due to COVID-19. 
The program will provide an online platform designed to identify the need and location of immunocompromised patients in communities across the United States, and mobilize and match one of Team Rubicon’s 120,000 primarily veteran volunteers, known as Greyshirts, to deliver food and other critical supplies to those patients. The online platform will also allow  patients with an identified financial need to apply for a one-time grant of $500 to help pay for food and nutritional needs. Please note that there are eligibility criteria for the grant and all patients may not qualify.

More information, including application instructions can be found at  https://teamrubiconusa.org/applynow .
Special FREE Program from
May 7th to Share
Great COVID-19 advice for cancer patients and their families with Dr. Laura Connelly-Smith, Associate Professor of Medicine and the Assistant Medical Director of Apheresis and Cellular Therapy at Seattle Cancer Care Alliance, who shared her expertise and wisdom. Jennifer Gillette, our LINK licensed staff social worker, provides coping skills and tips to instill calm.

Moving Forward: How to Live, Thrive and Stay Safe with COVID-19. 

Our mission to provide you with free online resources remains strong.
As we comply and integrate social distancing, we invite you to check out the following resources.

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.
How We Help Others!
We Invite You to Become an nbmtLINK Partner!
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. Want a free bookmark which lists our many Link Partners? Let us know and we will send you one!

We acknowledge and thank the following Link Partners for their ongoing support

American Society for Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Institute
Blood and Marrow Transplant Program at Northside Hospital
Blood & Marrow Transplant Program, The Sidney Kimmel Cancer Center at Thomas Jefferson University Hospitals
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope
Dana-Farber/Brigham and Women’s Cancer Center
Duke Adult Blood and Marrow Transplant Program
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
UPMC Hillman Cancer Center
Vanderbilt Ingram Cancer Center
Thank your for being a friend of the nbmtLINK. We simply could not do this without you. If you can support our efforts at this time, we thank you in advance. Every dollar helps..

Peggy Burkhard
Peggy Burkhard
Executive Director
(248) 358-1886
National Bone Marrow Transplant Link