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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

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

by Kay Forsht

When my husband, Woody, was diagnosed with acute myelogenous leukemia (AML) in late 1999, he was no stranger to life-threatening illness. In 1986, he had battled Hodgkin's Disease, which was successfully treated with extensive radiation therapy. With the leukemia diagnosis thirteen years later, it seemed like the past was once again colliding with an uncertain future.

Upon his leukemia diagnosis, Woody entered Johns Hopkins Hospital to begin induction chemotherapy. After one month, he was discharged. Following a six week rest at home, we again returned to the hospital for the second round-a month of consolidation chemo. Following this aggressive treatment regimen, my husband went into remission; sadly he relapsed six months later. When Woody's disease recurred, his doctors concluded that a bone marrow transplant was his best chance at long-term survival, and the search for a donor began.

Because Woody's sister was being treated for breast cancer and his brother was not a match, the doctors decided to conduct a search for a matching unrelated donor through the National Marrow Donor Program. While the search was underway, several of our friends organized and underwrote the expense of a community bone marrow drive. Over 150 people turned out to be tested and had their names added to the Registry. Though none of them were a match for Woody, a few have been contacted as potential donors for other patients. In raising awareness for our own plight, hopefully Woody and I have been able to help other patients who are struggling to find a donor.

A matching unrelated donor was eventually found, and Woody began preparing for a non-myeloablative (also known as a "reduced intensity") transplant. The reduced intensity regimen leaves some of the patient's immune cells intact so that the patient is not as susceptible to infection immediately after transplant. Also, since the chemotherapy isn't as intense, there is less chance that a patient undergoing a "reduced intensity" transplant will experience chemo-related toxicity.

Woody's transplant occurred at the Seattle Cancer Care Alliance on an outpatient basis, meaning that I, as his caregiver, had even more responsibilities throughout his recovery. When doctors told me that I would be playing this critical role in my husband's treatment, I initially felt overwhelmed and wasn't sure that I would be able to handle all that comes with caring for a transplant patient. As an only child and as a mother of two, I've had a lot of practice caring for others, but I had never administered an injection or cleaned a catheter. The hospital staff provided excellent educational materials to the families and friends of transplant patients to help us feel confident in our new role as caregivers. I feel strongly that by educating caregivers, the hospital staff empowers us and helps to create a sense of being in control of a chaotic situation.

I was also so thankful that I was not on my own in facing the challenges of being a caregiver. Our son was able to visit from California, and our daughter, now a licensed clinical social worker, was able to take three months off from graduate school to help care for her father. Kimberly stayed with us in Seattle and very willingly took on the responsibilities of being a second caregiver. Words cannot express what an incredible support both emotionally and physically this was to us. (Needless to say, I thoroughly enjoyed her companionship on our therapeutic shopping outings too!)

To adhere to a routine, Kim and I awoke each morning and got ready for the day just as though it were any other morning under less stressful circumstances. We found that dressing and putting on our make-up as if we were going out had a positive psychological effect on us as well as on Woody. Maintaining any small semblance of normalcy had a measurable impact on helping us feel more "like ourselves."

Woody was strictly monitored especially during those first 100 days. Almost daily there were doctors' visits or lab draws, multiple monitoring and charting of his temperature, hooking up a two liter IV, giving two injections (Woody much preferred Kim's technique to mine!!!), and dispensing and recording of up to 45 pills which were very time sensitive (I frequently had a portable three function kitchen timer set and in my pocket).

After five months, Woody was discharged, and we were finally able to return home to the East Coast. This was wonderful news, but I was a bit anxious. We were no longer going to have around the clock access to an incredible transplant team who had "seen it all." However, we were returning to Woody's former oncologist at Hopkins who greeted us with open arms. Her compassion and commitment to treating Woody guided him to a milestone-the one year transplant anniversary.

After transplant, you define "normal" very differently. Woody has returned to his job, but has modified his schedule so that he can work from home two days a week. He still has to be very mindful of germs and take many precautions to avoid contracting infections. As a very friendly and extroverted professional, it has been hard for Woody not to shake hands with colleagues and acquaintances-a precaution he must take to avoid the spread of germs. To prevent possible infection, we now sit in the back pew at church, and Woody jokes that I have become quite the gentleman-always opening doors for him whenever we are out.

We frequently enjoy parties, weddings and dining out. I use a trick I learned from the hospital staff in determining whether a restaurant seems like a good choice for a transplant patient: I check the restrooms for cleanliness because a restaurant with clean bathrooms is likely to have a spotless kitchen! Woody participates in most activities and events that he enjoyed before his transplant; it just requires a bit of scheduling. He gets fatigued easily, so he is careful to pace himself and plan ahead for what he really wants to do so that he'll have sufficient stamina.

Even though he's again able to drive to work and appointments, I still accompany him to each doctor's visit because four ears are better than two. Throughout Woody's recovery, our relationship has remained strong, though not untested. He got frustrated at times and wanted to break the rules, but I refused to let him. Woody also occasionally felt irritated that I never felt comfortable leaving him by himself; I learned the hard way that things can happen very quickly. So initially, I insisted on waiting until our daughter could be there before going off to run errands. Looking back, Woody says that Kimberly and I probably had a harder time throughout his transplant experience than he did. We remember it all; medication blurred his memory! We were quite fortunate to have incredible support. Our family and friends kept in daily contact and even flew to Seattle to see us and lend a hand when Kimberly returned to school. My other "ace in the hole" was an old friend who had recently moved to the West Coast and became our guardian angel. Caring for Woody was really a team effort!

Since returning home, we've enjoyed some downtime and adapting to our new definition of "normal." Of course, there are many more doctor appointments than any of our friends experience, but that is a small price to pay. Throughout everything, we've always been the best of friends. As my husband approaches his sixty-second birthday, we're looking forward to retirement and preparing for the future. While we still have many ups and downs, we view any challenge as the small cost of doing business.

Twenty-five years ago if this had been in my horoscope, I would have said I couldn't do it. Of course, I wish this had never happened to the person I love most, but I've been privileged to have the opportunity to witness Woody's strength, his hope, his faith, his courage, and his determination. Being his caregiver is really just another way to say to him, "I love you!"

Kay Forsht is a graduate of the University of Maryland and has been married to her husband, Woody, for 37 years. As the parents of a son and a daughter, they spent many years involved in school, church, and community activities. Being an only child, Kay first served in the role of advocate and secondary caregiver for her father for the 14 years after he suffered a stroke. However, none of this prepared her for Woody's diagnosis of AML and the responsibility of being the caregiver for a bone marrow transplant patient. With their commitment to each other-and a lot of hope and optimism-they knew they could face this challenge together. Now, more than five years since Woody's successful transplant, Kay volunteers with the NMDP Office of Patient Advocacy, using her experiences to benefit other transplant patients and their families.

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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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