Marsha Aizumi
On July 1, I was admitted to City of Hope for a stem cell transplant from my brother. MDS (preleukemia) has been a roller coaster of emotions.
On July 8, my brother’s stem calls were infused into my body. The doctor described this journey like an inverted bell curve: You start at the top and start to fall, then get to the bottom, stay there for a while, until you begin to rise again.
I feel like I am still at the bottom of the bell curve and have had to pull up all the strength and patience to ride out this difficult part of my journey.
Here are a few things that have helped me immensely through the most challenging times.
Be a Goldfish: If you have watched “Ted Lasso,” you will know that he says the goldfish has the shortest memory of all animals. So, he says, “Be a goldfish” to those when they make a mistake or have a bad situation. Throughout this journey, I have tried to take it one day at time. If it was a challenging day, I told myself, “Be a goldfish.” Leaving behind difficult days gave me the ability to not dwell on the past but look forward to better days.
Always Look for Hope: The hardest part of this journey has been not feeling scared. I felt scared when I thought about the financial impact on my family. I felt scared when I thought about dying. I felt scared about losing the life I had come to know. But being scared made me feel helpless, pessimistic and hopeless. What I did to turn this around was to reach out for support (one of the STAR CONCEPTS in a previous article I wrote).
I reached out to the City of Hope and received a financial grant. I reached out to friends and family to keep my focus on being positive and lift up my spirits. One friend gave me a saying that I connected with personally and would repeat whenever I felt afraid. And I started a Caring Bridge account and posted ways that I needed support.
Live in Gratitude: I tried to think about three or four things I was grateful for each day. On days I could, I would record these in a gratitude journal. Finding ways to be grateful helped shift my thinking away from my challenges and into how many wonderful things that were working.
Giving Myself Grace: There were days I lost my smile . . . times when I wasn’t who I wanted to be. I used to feel bad when I fell short of being the patient, uplifting, grateful person I wanted to be. I had to forgive myself, be kind to myself and realize I can only be a little nicer than I feel. I had a situation during one of my most difficult hospital nights . . . blood test at midnight, special blood draw at 2 a.m., vitals taken at 4 a.m. Finally settling down, I had hoped to get some sleep. Instead, my IV machine would not stop beeping off and on for the next three hours. I was frustrated. When my night nurse left her shift, she looked so sad.
JANM is now selling this goldfish soap. A nice gift for “Ted Lasso” and obon fans. (Photos: Courtesy of Marsha Aizumi)
The next night, I pulled her aside. I told her I knew she was doing her best, and I didn’t want her to think that I was judging her. I was tired, frustrated and living on lack of sleep. I said that I was sure that we would figure out some options, and the day shift, all fresh, helped me to do just that. That next night, when she left her shift, she came to say good-bye and gave me a hug. She said I was one of her favorite patients, and she doesn’t say that to all she cares for.
I believe that any situation can be a teaching moment for me. I believe that no matter how challenging the situation, I can still be loving and kind. I have been told, my intention is the greatest determinate of how a situation will turn out. Even if I fall short, my intention will always be how can I be better the next time.
After 25 days in the hospital, I was discharged 17 days after transplant, which my medical team said was amazing. Many transplant recipients stay around 30 days. I was home for 12 days, and then I spiked a fever and had to be readmitted.
To avoid rejection of the transplant, my immune system must be suppressed so that the new stem cells can be accepted. Infections are very common, but I never expected it to happen so soon for me.
I am writing this column from my hospital bed feeling stronger and hoping to be released soon. Thank you to all of you who have sent me positive thoughts, prayers or any form of encouragement on caringbridge.org and in other forms.
It is like having you by my side, at my back and walking in front, cheering me forward. You can never imagine how much everything you are doing is part of my journey of healing. I am forever grateful.
Marsha Aizumi is an advocate for the LGBTQ+ community and author of the book “Two Spirits, One Heart: A Mother, Her Transgender Son and Their Journey to Love and Acceptance.”
