My sternum fractured with a loud crack, and 3 vertebrae compressed as I pushed up on the cockpit of my kayak to exit. My first clue that something was very wrong with me. A few months later was my fifty-fourth birthday, July of 2018. Days later I was diagnosed with Stage III High Risk Kappa Light Chain Multiple Myeloma. I had 90% plasma cells in my bone marrow, 2200 Kappa Light Chains and three genetic mutations in my plasma cells. I started on Velcade, Revlimed, Dexamethasone (VRD) treatment immediately, working with my general oncologist for the first three months, then Kyprolis, Revlimed, Dexamethasone (KRD) for another two months. Prior to this, I was highly active and worked many hours at a high stress job. I never had any other surgeries or major illnesses other than pneumonia in my twenties and a tonsillectomy. Receiving confirmation that I had cancer was a shock. Not knowing if this would be fatal or the impact of treatment on my quality of life was stressful.
I learned shortly after my diagnosis that part of the plan would be to go through an autologous stem cell transplant (ASCT) after completing about 4-6 months of initial treatment. What did this mean to me and my family? What does this look like? Where will I be able to have it done? How long will I be in the hospital? How long will my recovery be? Is it really necessary? What happens if I don’t have it? Will it put me in remission? Will it help me live longer? Would I lose my hair? So many questions, some my doctor could answer, but not all.
I am a planner and needed to know as much as I could about what I would be going through. I wanted to prepare us for what would be the most difficult medical procedure I had ever been through. My oncology navigator provided some good basic information about the ASCT process and my husband, Paul, and I read about it online. This helped us create a list of questions for the interviews with the specialists. My oncologist in Oneida, NY recommended I have it done through their affiliate hospital, Roswell Park. This is located in Buffalo, NY, three hours west of our home. We met with Dr McCarthy, a highly regarded myeloma specialist at that facility. We really liked Dr. McCarthy, but the commute and commitment of 4-6 weeks away from home would be too difficult on our family. We then interviewed a doctor at Vanderbilt and Dr Berdeja at Sarah Cannon, both in Nashville. We had recently bought a home in Nashville to enjoy the music scene, and avoid the long New York winter. We chose Dr Berdeja as we felt most comfortable with him, and his team. The facility was only a couple miles from our Nashville home. He is the Director of the myeloma program and oversees all the myeloma clinical trials. This felt like the best fit for us as he is a highly knowledgeable and an easy to talk to doctor, in a facility that made it an easy commute. I found it interesting and a plus that I would only be in the hospital for four days and then be home, going in daily for 30 days to complete bloodwork as well as get supplements or medicine, as needed. This appealed to us as some hospitals require you to be inpatient for 15-17 days.
I now had a better understanding of the process, but had many unanswered questions that were better answered by someone that had been through it. I didn’t know about Healthtree or Myeloma Crowd at the time or the coaches’ program they developed. Luckily, friends and family connected me with several people they knew that had MM and had been through an ASCT. They were incredibly instrumental in helping me understand what to expect, how to prep my family and what additional questions to ask my medical team. This is why I decided to become a Coach for the HealthTree Foundation, to be able to provide this type of assistance to others. I was so anxious in the first few months of my treatment leading up to the ASCT and having others to talk to that had been through it really gave me some peace.
I will admit, that although I did my research and received some great feedback from other patients, I still wanted to find a way to get out of going through it. I asked my specialist more than once if I could avoid the ASCT. He assured me that this was the best treatment plan to get me into remission quickly and get my cancer under control.
I was anxious about how sick I might get from the Melphalan dose, how long I would feel sick and the fact that I would lose my hair. I had long hair, past my shoulders, and it’s never more evident to the world that you have cancer than when you have no hair. I was pretty emotional about it. I shared my concern with the nurse and she shared her story of cancer and hair loss with me. Her recommendation was to take control of the situation and cut it off prior to it starting to fall out. I talked to others that also went through this and they had done the same thing. I decided to make it a fun event and held a little hair cutting party at my home with my sister and a few girlfriends. My hair dresser was willing to come to my home to cut it for me. I wasn’t mentally ready to shave it, but I had her cut it short as a first step. My husband was kind enough to shave my head for me just before I went in for my ASCT.
I had my ASCT in February 2019. It required a daily clinic visit for 30 days after being released from the hospital and my husband had to work so I arranged for my sister and a friend to come. Having one of them take me to the clinic daily really helped us. This allowed my husband to focus on preparing meals and helping provide comfort to me as I experienced many side effects.
My recovery was very challenging as I suffered from constant GI issues with vomiting many times a day for the first several weeks, diarrhea several times a week, as well as complete exhaustion most days. I was unable to eat, drink enough fluids or take the prescribed medicines that would help protect me from bacterial, fungal or viral infections. I was unable to keep anything down, not even a bite of a popsicle. The nurses told me that the side effects from the Melphalan usually kick in around day ten after infusion. Mine started immediately, but were minor until around day 10. We were unable to get it under control at home, so I asked to be checked back into the hospital on day eleven. I needed the extra assistance of the nurses to administer IV treatments. I stayed in for five days to get stabilized and was able to manage the lessened side effects at home after that.
For the first 4-6 weeks, my focus was on trying to eat and drink, take my medicines, shower and try to walk a little each day. I used the shower like a spa treatment; seated in the shower and letting the warm water flow over me. After my shower, I was exhausted and needed to lie down before getting dressed. Walking initially started slow, maybe to the end of the block and back, then slightly farther each day until I could do a whole mile. At six weeks, I was definitely starting to feel much better and began going to yoga and Pilates classes weekly at my local Gilda’s Club. This club is for cancer patients and their families and provides many resources to help support them. They follow very strict protocols to keep the place germ free and safe for those with compromised immunities. This made me feel comfortable going there in person. Today, I still take classes as they’ve made them virtual due to COVID. These activities along with daily walks helped me gain strength within just a couple of months.
In May, I underwent testing to determine if I had achieved remission. It is always so stressful to wait two weeks to learn the results of the tests. When Paul and I met with Dr Berdeja, we were thrilled to learn I had zero cancer in my bones. He described it as a Stringent Complete Remission. He also told me there was no need to go through a second ASCT as he had once recommended. Paul and I did a little happy dance once the doctor left the room. The only disappointing news in that meeting was that I needed to go back on KRD to maintain my remission. Since I have high-risk features that could shorten my remission time, it’s important to stay on a more aggressive maintenance plan. I was not concerned about side effects, as they had been very manageable on this treatment. It did mean I would need to go to the clinic twice a week. I had hoped to have more of a break, but knew it would help me stay in remission.
As I look back on the experience, I am thankful the doctors have this medical miracle that has helped so many survive this cancer and extend their lives. I thank my caregivers: my loving husband, my sister Joanne and my friend Caroline. I also am so appreciative of all the love and support that I received through phone calls and cards from many family and friends. These words of encoruagement really helped me get through this process emotionally. For some myeloma patients staying in the hospital for 15 or more days may be the best option. It provides more nursing care to address side effects quickly and takes some stress off the family care givers during the worst part of the recovery. I recommend to all that will go through this process, to select a coach to help them understand what it will look like for them and how best to prepare for the procedure and recovery.
Written by: Amy S. Gebhardt
Amy lives in Nashville for the winter, summering in Upstate New York and on the St Lawrence River with her husband of 24 years, Paul Gebhardt. Her career was very diversified including Retail Management, eCommerce, Public Relations and Human Resources. She has always enjoyed a new challenge and learning new skills. She quit her job as Senior Regional Human Resource Manager at Rite Aid at age 54 to move to Nashville with her husband. Six months later she was diagnosed with Multiple Myeloma. Currently, she spends her time volunteering for HealthTree, Gilda’s House and Jessica’s Heroes Foundation. She enjoys exercising, spending time with family and friends and sewing.
If you are a myeloma patient or caregiver and would like to share what you've learned with others- become a Coach! Coaches are asked to volunteer up to eight hours a month for up to a year. Initial and ongoing training is provided. If you would like to talk to a Coach visit our website and find one who is a good match for you.
about the author
Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.