Surviving the guilt of my dad’s death

One of my favorite family pictures.

Fourteen years ago, my dad died from multiple myeloma, an incurable cancer of the blood. He was in his mid-50s. The ache of missing him never leaves, the tiny hole in my heart still empty. I miss everything that is him, even the faults. And for the longest time, I felt responsible for his death.

Last week, I celebrated 20 years from treatment for bone cancer. We were stunned when I was diagnosed at 21 years old, but I think it hit my parents hardest. After my diagnosis, my dad several times told me that he prayed to take the cancer from me. I scolded him for saying things like that. My treatment was horrible, and at times scary, but I would never wish it on anyone, let alone my family. Throughout my treatment, my dad went to the doctor a few times due to exhaustion and just not feeling well. Each time, the doctor said he was fine, most likely tired from the stress of having a daughter with cancer. So he pushed it off. And then a few months later, I received good news that chemo was working, and days later we learned the devastating news that my dad had late stage multiple myeloma.

For six years, we fought his cancer when it returned, and celebrated when it went away. During that time, he had two heart surgeries and eventually ended up on dialysis. And then the cancer returned and research hadn’t caught up yet and no new treatment options were available. So he made the decision to be in control of his own life. Dialysis stopped, and less than 48 hours later, my mom, sisters, brother in law and our pastor gathered at his bedside in my parents’ home to see him off on his new journey. Those are moments forever stored in your memory. I remember moments after he was gone, turning off the oxygen machine and sitting on my parents’ deck, breathing in my own oxygen, wondering how this new chapter could be written.

During a healthy phase for him.

I admit the next few months were challenging. Since my dad was diagnosed before I even finished treatment, I really didn’t take time to process my diagnosis and what the future held for me as a young adult cancer survivor (I’ve since learned we don’t know what the holds for any of us, cancer survivor or not, because, well, it’s the future). Then we were always looking for new treatment when he relapsed or focusing on enjoying life when he was healthy. So I tucked my emotions in a small spot inside to deal with later. When he died, the little space grew too small, and fighting for space was the grief and…..overwhelming survivor’s guilt. How could I be alive and healthy after cancer when he died from cancer? What if I hadn’t been in treatment when he started to not feel well? What if he hadn’t prayed to take my cancer from my body?

I know deep down it is not my fault that he died. It is not anyone’s fault, just that stupid, mean disease. It knows no boundaries. I finally met a great grief counselor who reminded me that I could still pen a storyline, I am in control of my reaction. So I took control. I felt such passion and joy at advocating for others that I put some energy into those activities. I mentored other survivors, visited Lansing and DC, became committed to organizations, like LIVESTRONG, American Cancer Society Cancer Action Network and the Cancer Support Community, that advocate daily for cancer survivors, wrote letters and articles, traveled, volunteered, spoke at events across the country, and much more. And I began sharing my dad’s story. I let him be the shining example of the need for more cancer research and better treatment options. After all, my family and I had six beautiful years with him, thanks to research outcomes.

And then someone commented how awesome it is that I share his story to make a difference. And another mused on his legacy of helping in the progress of cancer research, how he was such a beautiful example of the good that comes from research and new treatment. And another said how brave of him to choose his next journey, knowing he could impact the future of his own family’s health, as well as others. When I changed the perspective of his death, I slowly felt that heavy weight lift.

My dad is always in my heart as I advocate.

It is an ongoing balancing act, to be sure….I celebrate my anniversary from finishing treatment and good health at the end of June, a little over a week later is the anniversary of his death. I advocate as a cancer survivor, a living example of the success of research and new treatment options, and share his story as an example of the critical need for more research and treatment options to extend the lives of others living with the disease. I age, go on adventures, create memories and dream of what’s to still come in my life (I am overwhelmed at times with gratitude at being alive). He will not share in any of those moments with me, or my family.

But then something extraordinary happened when I finally let go of the guilt and grief…. I saw my dad’s journey as his. Not mine, not my family’s. Yes, we were so very lucky to be part of his story, but he owned his story. And I’m honored to share it as I can, to help others, be a voice for change in his name. I know he would be so very flattered and humbled to know he continues to make a difference for others.

In 14 days, I will join an amazing group of people to represent LIVESTRONG as we ride across Iowa raising awareness of and funds for the organization’s programs and services for people facing cancer. I admittedly feel a lot of anxiety thinking about the challenge, even though I’ve been training a lot! But I also know my dad’s voice will be pushing me along the way. He believed in me. And he believed in LIVESTRONG’s support of cancer survivors and caregivers. He used to tell me that he liked how I always smiled when I talked about the people I met through the organization, making him that much more supportive of it. If you would also like to support LIVESTRONG, please consider a donation to my bike efforts. And every $10 donation increment earns you an entry into a drawing for a Michigan-themed goodie bag. Because my family always likes to have fun!

And if you so desire, raise a glass to my dad today, to celebrate the kind, brave man he will always be (his drink of choice was always Bud in a can, no glass).

 

 

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