Saying Goodbye

@alive, I’m so sorry for the loss of your new friend. There is a special bond that develops between BMT patients. Without even having to go into details, we silently share the battle scars that allowed us to accept our second chance at life.
To lose someone with whom you had these moments of hope and healing it feels like a gut punch of unfairness. I went through similar with a new friend, Shary, I met while we had our transplants. Our husbands became close friends while we ‘gurls’ faced our daily challenges. Shary had a host of comorbidities that made the transplant risky but she opted to try for it anyway. Tragically, she passed away during her early months while we were still in residence. The range of emotions, on so many levels, was a rollercoaster.
It’s rare to have this happen and most SCT’s are successful. But I don’t think any of us take our lives for granted anymore after having a SCT. And quite honestly, when Shary passed away, I felt survivors guilt for a long time.
Her husband was so gracious, and continued to check up on me…wishing me full speed ahead. But dang, the tears still come when I think of the life Shary should have had.
I’m so sorry that you lost your friend. She was a valiant warrior and it’s wonderful that you and she were able to meet. I’m expecting that you were an enormous comfort and life line for her and her family. Sending a gentle hug.

Thank you for your kind words! The woman I wrote about had other comorbidities as well. She knew that she would have challenges after the transplant, but no one ever knows what the experience would be like or what would actually happen. Like all of us, she could only cling to hope, but knew that there were no guarantees.

I used to feel survivor’s guilt when I lost friends I met during and shortly after my transplant. Now I am no longer experiencing survivor’s guilt, but gratefulness to be alive and living a fulfilling life. I’m am also reminded of the fragility of life and the need to help others who are dealing with AML diagnosis. Meeting a 5-year SCT survivor was a very powerful experience while I was getting ready for my transplant, and now I want to give others hope as well.

Like you, I no longer experience survivor’s guilt. But there were a few instances where the passing of an acquaintance sure hit me. Anyway, now we have the opportunity to use our experiences as a survival guide for others.

It’s interesting that you met a 5 year SCT survivor and the impact they had on you. I had a similar experience about 1.5 months post transplant. I was back in general pop for labs by that time and was sitting in the large lab waiting area. It was pretty crowded…before Covid. So I’m sitting there with my Vogg mask, bald head, dark circles under my eyes. Haha you know the look. Anyway, the lady across from me complimented me on my shoes, bless her heart! ☺️ We got to talking and then she asked if I had a bone marrow transplant. “I asked, what gave that secret away?” 😂. Anyway, she replied that she was there for her Two-year followup. Wow, she looked fabulous. Full head of hair, gorgeous skin, a little tan…picture of health. Then, next to her a man said, “No kidding, I’m here for my 5 year!”

The conversations were priceless and their impact was powerful!! I will never forget that moment. They gave me hope!! And that is why, @alive, you and I are here. We had those seminal moments of understanding…of how it important it is to have mentors. To be able to speak with someone who has walked the same rocky path before them. Thank you for being such a positive and encouraging lifeline within our community and beyond…you help give hope.

I am sorry to hear this. I have known people who passed, but it was the effects of the body and not a direct hit by the original cancer. We just do not know. I would bet seeing her in person and sharing with her gave her comfort. She could never had guessed her life would go the way it did. We can plan, but life and our bodies have the last say.
i hope you send her husband love from all of us.

Thank you for your reply! I do feel like you - I am on a mission to encourage friends and people I meet who have been diagnosed with cancer. I sometimes share pictures from my hospitalization - I looked and felt just like what they are experiencing. They feel like they have no control over their lives and bodies, and I experienced that as well.

I can only imagine how emotional it was for you to meet those two survivors! That must have been a amazing boost of energy that pushed you to continue working hard to regain your strength and keep your spirits up!

I am very glad I was able to encourage this woman. You are right - we don’t know what the outcome of treatment would be. We have to live in the moment and hold on to hope.

I did reach out back to the woman’s husband to give my condolences. I think he was prepared for her passing, since she had been intubated several times during her hospitalization.

I also had two “mentors” who were AML survivors when I was going through chemo before my BMT. It was right before COVID hit in early 2020, and they both came to see me in the hospital to tell me about their experiences. One of them, Steve Buechler, was like a patient advocate and now gives speeches, writing support groups, and other types of events for leukemia organizations. He inspired me to join the Leukemia and Lymphoma Society’s First Connections program, where I speak to AML patients on the phone about my experiences with AML and the BMT. It’s very rewarding to help others and they appreciate it, as I did when Steve talked to me.

That’s a great way to have your AML journey make a difference in the lives of others. After my diagnosis I was trying to make sense of why I had leukemia and what God wanted me to do with my experience. I didn’t want to waste it.

While working full-time and family commitments keep me very busy, I always look for individual opportunities to help other cancer patients.

@alive I think it can be our mission to be an example for others to look to, no matter our situation! I have active multiple myeloma, plus endstage kidney disease. I was going to try for a kidney transplant earlier this year. In conference with both oncologist and nephrologist, the transplant center said I needed a SCT before evaluation for kidney transplant. Long story short, my chances of surviving a SCT are not good. So, I am on dialysis rest of my life, and reaching out to others who have a similar situation, to tell my story. So much is about attitude, and how we can do the best for ourselves and the rest of our medical team [we're a part of that, you know!]
Ginger