Offering hope gives me meaning & purpose: Meet @alive

ROSEMARY: What brought you to Mayo Clinic Connect? 

@alive: I was diagnosed with acute myeloid leukemia (AML) and received a stem cell transplant 10 years ago. It was a very scary and lonely time for me. I was only 50 years old, and my youngest son was in 8th grade. I wasn’t ready to die. My doctors didn’t want to discuss my chances of surviving leukemia, so I had to come to grips with the possibility of not surviving. While my family and friends were there to support me through my illness, I knew that they had their own lives to live and I had to experience all the pain and suffering on my own.

I met my first AML survivor and a stem cell transplant recipient three months into my chemo treatment. She was a young college sophomore, who was a 5-year AML survivor. I was in tears, seeing how alive and healthy she looked. This gave me hope that I may survive as well!

Five years ago, a friend of mine, who is a heart transplant recipient, introduced me to Mayo Clinic Connect. I began to participate because I really wanted to connect with other people who had AML to give them hope and share my experience with them.

ROSEMARY: What motivates you to take part in the community?

@alive: I enjoy sharing and being part of a community of people who have experienced or are experiencing the diagnosis of leukemia and managing stem cell transplant. I also like reading about the latest treatments of AML since there have been so many new discoveries since I was diagnosed 10 years ago. I also want to help other AML patients. Letting newly diagnosed AML patients know that there is hope and life after leukemia and transplant is something that gives me meaning and purpose.

ROSEMARY: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@alive: After I had recovered from AML, I found that my friends and family had moved on with their lives and didn’t really want to dwell on my AML journey. However, since this was such a life-changing experience for me, I needed to be part of the AML community. Mayo Clinic Connect helps me have this important connection.

ROSEMARY: What support groups do you participate in?

@alive: I participate in Blood Cancers & Disorders; Bone Marrow Transplant (BMT) & CAR-T Cell Therapy; Cancer: Managing Symptoms; Healthy Living; Just Want to Talk; and Spine Health Support Groups.

ROSEMARY: Tell us about a meaningful moment on Mayo Clinic Connect.

@alive: I’ve had a lot of meaningful moments, especially when I have opportunities to share the information that I wished someone had shared with me when I was newly diagnosed with AML. I had an opportunity to meet a woman online on Mayo Clinic Connect who also had AML and was preparing for her transplant. She was receiving her treatment in Phoenix, where I was being treated. I met with her in person when I was visiting Mayo Clinic there for my own appointment. Unfortunately, this woman contracted a severe infection which overwhelmed her body after her transplant. We spent an hour talking about our leukemia and transplant journeys. We both felt a special connection because of our shared experience. Even though I couldn’t make this woman’s suffering go away, being there for her was very special for both of us. 

ROSEMARY: What surprised you the most about Mayo Clinic Connect?

@alive: What surprised me the most is how positive and well-researched a lot of the answers are here. Before finding Mayo Clinic Connect, I participated in other forums that focused on leukemia and stem cell transplant which didn’t provide balanced information and presented only the worst-case scenarios.

ROSEMARY: What energizes you, or how do you find balance in your life? 

@alive: Living a full life and helping others energizes and brings balance to my life. I am still working full time as an academic advisor at a university. I also volunteer for a refugee organization and teach English to a group of Sudanese women. I love spending time with my four grandchildren in Minnesota.

ROSEMARY: Tell us about your favorite pastime or activity.

@alive: My favorite activity is to upcycle clothes and to make totes and crossbody bags from used jeans. It’s a new hobby that I picked up a year and a half ago. It brings me much joy when I can give personalized presents to my friends and family that they can’t find anywhere else.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

@alive: I read a quote when I was undergoing my chemo that said: “Remember in the darkness what God has shown you in the light.” As a person of faith, I was reminded that the God who was with me and took care of me before my diagnosis was the same God who was with me in the hospital room. I could trust Him regardless of the outcome of my illness. This gave me so much comfort and hope!

ROSEMARY: What do you love about where you live or vacation?

@alive: My husband and I are big-time travelers. We moved to Arizona seven years ago and enjoy our beautiful sunshine but also love visiting Point Lobos – a park just south of Monterey Bay in California. We enjoy traveling to Minnesota to visit my daughter and my grandkids, and we love traveling in Europe.

ROSEMARY: Puppies or kittens? 

@alive: I love both kittens and puppies. Right now, we have puppies – two 15 lb. dogs who love to take road trips with me and my husband. I don’t think cats would do well on long trips, otherwise we would have a few as well!

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