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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

by Erin Gentry

I had just started my third year of graduate school when my mother was diagnosed with Diffuse Large B-Cell Lymphoma and a tumor in her abdomen the size of a grapefruit. My mom and I have always been intensely close, and being 1200 miles away as she experienced the repeatedly disappointing results of three increasingly aggressive chemo protocols was, well, gut-wrenching. My first response was to join the National Marrow Donor Program Registry and to cut my long hair and donate it to Locks of Love to be made into a wig for someone; but I was having a hard time just getting out of bed in the mornings because I felt so frustratingly helpless. When the stem cell transplant loomed on the horizon, there was some question as to who would be the primary caregiver. I certainly had the most flexible schedule in my family, and it was with great relief at finally being able to DO something that I took a leave of absence from school and moved back home to Nebraska for four months.

As grateful as my mom was that I could be her caregiver, it was not an easy thing for her-or any parent-to accept. Parents want to do the caregiving, and they want to make things easier and better for their children. My mother felt guilty about "uprooting" my life. It took some time for her to be able to accept that-emotionally-I needed to be there just as much as she needed me there. And let's face it: as soon as the diagnosis of "Cancer" is made, everyone's life gets "uprooted" as plans change and priorities dramatically shift.

Caregiving for a transplant patient disrupts the rhythms of your normal life, substituting doctors' appointments, blood draws and medication schedules. Time is a funny thing in the transplant world. It is what you are fighting so desperately for more of, and yet what often passes monotonously in waiting rooms in anticipation of the next set of "results." But time is all about how you choose to fill it. Mom and I carried a favorite word game with us wherever we went (mom still claims it helped with "chemo brain"!) to fill in those waiting spaces. And since both of us are workaholics at heart, we unexpectedly found ourselves with time for leisurely conversations and with bonafide excuses to "goof off" in whatever ways we could invent. We had the kind of time to spend together that grown children and their parents rarely get. Despite the hard, scary and ugly moments, we both remember this time as one of the greatest gifts the transplant process gave us. (Yes, it does give gifts!)

But, along with the gifts, there were most definitely, hard, scary and ugly moments, all requiring different sorts of coping. One of the hardest things for me was my mom's need to talk about death. People cope with the ever-present specter of death in different ways. My mom, the scientist, needed to face it openly and talk about contingencies, and she needed to know that if it came time, I would let her go. I felt my job as a caregiver was to revive her spirits when they flagged, to cheerlead, to help her fight the fight, and it was hard not to feel failure and despair when my mom talked about her death. But I learned that being able to talk about death was just as much a part of caregiving for my mom as crusading against it. We compromised: I promised I would let her go if it came time, as long as she promised she would fight her hardest until that time came.

The scary moments were of the mind-numbing "this can't really be happening" variety. It was frightening enough that they predicted a 15% chance of success going into the transplant due to her tumor's classification as "chemoresistant." But it was utterly terrifying when mom ran a dangerously high fever for several days, when her lungs filled with fluid, and when her heart rate soared off the charts. Most of all, it was when she stopped being "mom." The full impact of our role-reversal didn't hit me until she was so sick that I was no longer just holding her up but was shouldering the decisionmaking without her input.

During those early post-transplant days, I wondered if I would ever see "mom" again. Those were the lowest days, the kind that had me asking if I was strong enough for this. I was. And I promise, you are, too. Whether you call on faith, on hope or on will, you will find it there when you need it most. And never stop believing. My mother- who bounced back from heart failure in a matter of days and is nearing three years in remission-is proof that statistics are only numbers.

Sometimes it was difficult for me to cope with my own feelings. I felt frustrated, angry, helpless, sorry for myself, then guilty about having any of these feelings in the first place. I was very blessed not to have a job at risk, or a family of my own needing care, and was additionally blessed that my stepfather was also there to provide caregiving respite and to handle all the financial matters. Most people caregiving for a parent have many more needs to juggle and sacrifices to make. Yet, even in my situation, caregiving had its strains, and I had to learn the importance of taking time off and taking care of myself. I still felt guilt: after all, my mom couldn't ever take "time off" from having cancer! But by allowing myself time to visit old friends or catch a movie-and in so doing, to re-gather my spirits and relieve my frustrations-I was being the very best caregiver I could be. As selfish as it sounds, caregivers need to put themselves first sometimes. And they need their own caregivers, especially someone who is wholly invested in their well-being (as opposed to the patient's), someone to whom they can admit all their frustrations without fear of judgment and who can remind them to take time for themselves. Support groups, and even other caregivers, can be great sources for letting off steam; just make sure you have someone!

Beyond helping with medications, meals, etc., and keeping that ever-important notebook of details and questions, I found there were other ways I could make a significant difference for my mom's experience. One such way was in keeping friends and family updated on my mom's progress. We found an online blog (we used livejournal. com, but caringbridge.org is another great, free site) where we could post daily updates and visitors could leave comments, the most efficient and easiest way to do this. I could also help by supporting my mom as she searched for meaning in this journey (her way of answering the "why me?" question). For my mom, that meant giving back and making something beautiful out of the experience and wisdom she was gaining.

To this day, when my mom reads back over our "livejournal" of the transplant experience, she is shocked by many of the entries I wrote during her sickest moments. The details are wholly unfamiliar to her; she simply has no recollection of them. This is the best gift I can offer to any of you embarking as caregivers on the transplant journey: those days when your loved one is in the most pain, is the most miserable, and you ache the most for them. these are the days they are least likely to remember. It truly is a second birthday for them, and you, too, one day farther along in the healing process, may be able to look back on the experience not with memories of the struggle, but with joy and thanks for the new life it enabled.

Erin Gentry was the primary caregiver for her mother, Martha, during her autologous stem cell transplant for non-Hodgkin's lymphoma at the University of Nebraska Medical Center in Omaha in 2004. She currently resides in Durham, NC and very much hopes that by the time you are reading this, she will have completed her PhD in English. Her caregiving experience has changed her life in many ways: she has become a regular platelet donor; she ran a half-marathon as a fundraiser for The Leukemia & Lymphoma Society; and she is the recipient of a beautiful gift of perspective that regularly reminds her how wonderfully lucky she is to have her mother, alive and healthy, in her life.

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Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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