Lessons from a breast cancer widower

October 10, 2013

By David Imondi

I dread October. I change the TV channel when all the pink ribbon commercials come on. I understand why my wife hated pink ribbons. There was nothing pretty or delicate about the disease that ravaged and killed her at age 47. My wife was Dr. Suzanne Hebert Imondi. She was your vice president. She was my true love.

Yesuzannears ago, Suzanne asked me to share my experience as a “cancer husband” to help MBCN members. I never did. Now, I write this as a heartbroken widower who is trying to raise two young kids without their beloved mom.

I thought I was a good Cancer Husband. I spent countless hours in waiting rooms in cancer centers from Boston to Houston. I slept sitting up for weeks in uncomfortable hospital visitor chairs by Suzanne’s bedside. I kept a large binder with me with copies of PET scans, path reports and lab values. I used a label maker to make sub-divisions and taped physicians cards to the inside cover. In retrospect, I think I was trying to control a disease that could not be controlled.

If I could offer some meager advice to all of those battling metastatic breast cancer and their loved ones, it would be to try to hold on to those moments of happiness when they come. Suzanne and I lived from scan to scan. We would go over the PET scan results and anxiously highlight the areas that were too many times described as “lesions that could represent further metastasis.” Don’t wait for “clean scans.” They may never come. Go to Disney or rent a villa in Italy before the next scan. Lean hard into joy. Sometimes we forget to live while we’re trying not to die.

Please write lots of notes and record videos for your loved ones. Suzanne did not like the finality that those things implied. But now I see how our brave, beautiful kids cherish every note she ever wrote to them. It helps keep them constantly connected to her.

Lastly (and most difficult for me to discuss) remember to say everything you need to say to the people you love. Even though Suzanne lived over 7 years from her initial metastatic breast cancer diagnosis, I thought we had more time. The end happened more quickly than I expected. I thought I had had more time to remind her that even with no hair and draped in hospital green, she was the most beautiful girl I had ever seen. I thought I had more time to tell her how she was the best thing to ever happen to me. I thought I had more time to just hold her and tell her how much I loved her.

I am sorry I don’t have more to offer all of you brave women fighting this disease. Please do know that your courage inspires many. Know that your Cancer Husbands, like me, would give their lives to lift your pain even for a minute. Most of all, know that you will never, ever be forgotten…..

Editor’s note: Thank you, David for this beautiful and heartfelt letter. If you are reading this and are also a single father due to cancer, you may be interested in this website: http://singlefathersduetocancer.org/home.do

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A daughter’s story

July 13, 2012

In 1999 my mother Hong was diagnosed with Stage II Her 2 positive breast cancer. In 2001  it returned and in 2009 after a long battle, my mother passed away. I am thankful I had such a courageous mother and of the many good moments we had in those years. However, as an immigrant family and as the caretakers of a patient who did not speak English fluently, we had difficulty navigating the labyrinth of metastatic breast cancer treatment and at times were incredibly confused and isolated.

I can only imagine now how incredibly scared my mother must have felt when she learned her cancer had returned at age 40, less than 2 years from when she was diagnosed. None of us knew that breast cancer could return or that when it did, it would no longer be curable. I can only imagine how she felt as my father reluctantly translated what her oncologist said: you now have mets to the spine, you are Stage IV and there is no cure for you. I was 11 and my brother was just 2.

In the years following we tried to do our best to obtain the best care for my mom. It was a challenge translating the types of pain she described to doctors and nurses. Reading scan reports often led to dictionary searches and my father or I were always required to accompany my mother to appointments to translate. Additionally, culturally speaking, patients in China are less aggressive in patient-physician interactions than those in the US where patient self-advocacy is encouraged and we were uncomfortable questioning oncologists, at least initially.

The most challenging areas were obtaining accurate information on treatment and clinical trials for metastatic breast cancer and finding support. Despite the Pink movement and the focus on breast cancer in hospitals, we just could not find complete information on metastatic breast cancer treatment specific to Her2. The language barrier did not help. We knew of Herceptin and we would hear of certain options such as taxanes and platinums but we didn’t have an understanding of all the treatment options.

Finally, during the duration of my mother’s battle with metastatic breast cancer, we weren’t able to find other Stage IV folks to connect with and did not feel like we had a voice. After neither the Chinese language support group nor the hospital support groups my mother found had any Stage IV members, it dawned on me that metastatic breast cancer is still in the shadows. This past month I found MBCN. I am glad that I am now able to share my story and I hope that collaborative efforts will bring more attention and research funding to this disease.

Sue (Shuyang) Yao

MBCN volunteer