by Janet Graeff
As of March 14, 2016, my daughter is 10 years NED, no evidence of disease. She is a peritoneal mesothelioma survivor. I was her primary caregiver during her recovery from surgery and chemotherapy. The chemo, for her, was extremely difficult. We nearly lost her to a weird reaction to the second infusion. But, the dosage was tweaked and she endured all 6 infusions. Caregiving was intense.
As we went through her follow-up with the team of doctors her surgeon had recently left, we realized the care wasn’t working. Neither of us could develop a relationship with the doctor. It was obvious he was uncomfortable with her history. He admitted to never knowing anyone who had survived mesothelioma or experienced the surgery she’d had.
While she was in treatment, we stayed away from online research. It was depressing, scary, and we couldn’t separate truth from fiction. Curiosity drove me to do some searching once her treatment was over, and that’s how I found the Mesothelioma Applied Research Foundation. I read through their website and contacted them.
I became a member of what were then sort of chat rooms. At first I just read. Then I began to comment on posts and ask questions. When I knew that it was the right place to be, I got my daughter’s ok to contact Mary Hesdorffer. After explaining our situation, she connected my daughter with a specialist that fit her needs, and he took over her follow-up care.
During all this she regained enough physical strength to return to her own home. I did some therapy to help myself transition from caregiver back to just Mom. I also was getting to know patients and caregivers more through the Meso Foundation’s online support groups. In spite of the joy for her survival and the therapy to regain focus on my own life, I was angry. Angry that this horrible, preventable thing happened to her. Angry that the carelessness of asbestos use had nearly cost me my youngest child. Add frustration to that anger when I began to learn just how many patients, and how many doctors, had no idea there was even treatment available for mesothelioma!
I had developed an online friendship with a patient and advocate named June. She was a nurse who had pleural mesothelioma. We began to share private e-mails. June told me I needed to channel my anger into hope for others. She said I needed to share my daughter’s survival with other patients so they’d have that hope to hold on to. Mary also encouraged me to get more involved. I began to really join in the online discussions. I discovered it was the right fit for me. I channeled my anger into trying to share hope for all those patients and caregivers. Ten years later I’m still trying to share and support.
The Meso Foundation’s online presence has gone through huge changes. The community seems huge now and it is international. Through the Foundation I know and feel real friendship with people around the world.
I attended two of the Meso Foundation’s International Symposia on Malignant Mesothelioma in Washington D.C. with my daughter. Attending this event is an amazing experience! I was able to meet and listen to mesothelioma experts, and the best part was seeing and meeting the friends I had made in the meso community online.
The medical advances in mesothelioma treatment and research towards finding a cure astound me! I’ve done, and still do, some advocacy. I’m most comfortable with patient and mainly caregiver communication and support.
The mesothelioma community is now an extended other family for me. I need them. While we rejoice in my daughter’s survival, an ugly truth remains. There is no cure. That ugly, deadly thing known as mesothelioma could return. It could still steal my baby. I try to temper the hope I offer with that reality. If it ever returns, I will need the Meso Foundation and my meso family more than they have ever needed me.