I’m so pleased to share a new #MetsMonday featured post. This one comes from one of my favorite fellow bloggers, Lisa Valentine. Lisa shares about her sister’s recent death from metastatic breast cancer and how the experience has impacted, and continues to impact, her family.
It’s always been my goal to share this space with others impacted by MBC whether they be partners, caregivers, siblings, children, friends or, of course, individuals themselves living with MBC.
Thank you, Lisa, for sharing your voice at Nancy’s Point. Be sure to leave Lisa a comment or ask a question in the comments.
I’m Still Standing
by Lisa Valentine
I’m still standing. Walking, running, enjoying family, and holding a job too. I’m still alive. My sister Mary Jo is doing none of the above. She died on June 16, 2019, two months short of her 62nd birthday.
Her spirit lives on in many ways, but her physical body was ravaged and killed by spreading cancer cells that treatments, also ravaging her body, could no longer stop. Sooner or later, metastatic cancer wins.
If you are a fan of Elton John, like many in my family are, you will recognize that “I’m Still Standing” is also the title of one of his many hits and a meaningful conclusion to the recent biopic Rocketman.
My husband and I went to Rocketman just days before Mary Jo died. I had been to visit her, 800 miles away, in mid-May. When we said our goodbyes, we knew they were our last physical and earthly connections. Her final words to me included, “I hope this doesn’t happen to you.”
“This” is metastatic breast cancer (MBC), the cancer that kills over 40,000 women and men each year.
That statistic often angers me, as too much pink and too many trying to profit from the emotional aspects of breast cancer have detracted from the efforts to find a cure for MBC. The death toll has remained relatively unchanged for nearly four decades.
The number hit home so much harder when my sister became one of the 40,000.
I do need to state that I appreciate the advancements that have come. I benefited from some in my own treatment for breast cancer in 2008, including Aloxi, an anti-nausea drug, and Oncotype DX, a test to determine the need for and possible effectiveness of chemotherapy. I speak freely, not in hushed tones, to those who wish to know more about my treatment and surgery experiences, and why I opted to have no reconstruction following bilateral mastectomies.
Breast cancer is more openly talked about, but MBC still gets the hushed tones.
We need to get loud about it and about death and dying. Loud, like my siblings and I tend to get with laughter and conversation when we gather.
One of us is silenced now. Our grief is loud.
Though the tide is starting to turn in terms of money going to research, it isn’t enough. Not nearly enough. Especially when it comes to metastatic cancer.
Millions and millions of dollars have gone into the BC machine, but what has come out of this machine has too often ignored advanced disease and trivialized the experiences of those who live with, and die from, breast cancer. Many well-meaning individuals and organizations have unwittingly hampered progress.
If awareness had truly been effective all these years, more people would know what MBC is, more money would have gone into research, more progress would have been made to solve the mysteries of MBC, and maybe fewer would have died.
I have seven sisters and five brothers. Mary Jo is the first to die. (I took some comfort that she died on Father’s Day. On some level our father, who died in 1998, was there to greet her.)
There is a gaping hole at #6 in the birth order now.
We beat the odds for a long time, surviving life on a farm, teen driving, risky behaviors, alcohol abuse, mental illness, close calls in many ways. It was just a matter of time, and now that time has come. It doesn’t make it any easier. Siblings are extra special people in our lives. We share more genetics and history with them than we do with anyone other than our parents and children. I am deeply blessed to have the connections I do with my siblings and their families.
Before Mary Jo died, between her, my sisters Zita and Leonice, and I, we had over 40 years of cancer survivorship. Zita was diagnosed with breast cancer in 2004, Mary Jo in 2006, me in 2008. Then, Mary Jo had a different, primary lung cancer in 2010, and Leonice was diagnosed with uterine (endometrial) cancer in 2017.
There are scars, missing body parts, chemo stories and much more in this sisterhood.
Zita, Mary Jo and I each had early stage breast cancer on our initial diagnoses. Statistically, about a third of those with early stage BC will go on to have metastatic disease.
That statistic just played out with my sisters and I. Zita and I remain diligent, and this is where research also needs to be diligent.
What can be done to identify this doomed third earlier, before the death sentence of metastasis?
Mary Jo was almost 62 when she let go of the pain and struggle and found the peace she so deserves. She had also beaten the odds with her nearly nine years of lung cancer survivorship. She had more years of life than many get.
That is little consolation to her husband. They didn’t quite reach their 35th wedding anniversary. It was on June 23, a week to the day after she died. Tell that to her daughter, who didn’t get to celebrate her milestone 30th birthday with her mom. That came on June 21, five days after Mary Jo died. Tell that to her other daughter, her sons-in-law, and her seven grandchildren who won’t have any more birthday and holiday celebrations with Nana.
Tell that to my siblings and me, to our mom, to Mary Jo’s friends and co-workers. I can’t pick up the phone to call Mary Jo or send her a note or package in the mail anymore. Pictures of her wide smile and saved messages that capture her voice are small comfort when set against the raw grief for her suffering, her shortened life, for all she will miss experiencing with her husband, daughters, grandchildren, friends, us.
Each number in that 40,000 has similar stories of those left behind, missing their presence, their unique personality.
I’m still standing, and with that I have a responsibility.
I have a sister to honor and grieve, and a cause which needs my energy and support. When we are able, my husband and I have donated money to METAvivor. All donations go to research grants surrounding Stage IV, advanced disease. Breast Cancer Action is another reputable organization I support. They are behind the “Think Before You Pink” campaign and many other activist endeavors. Both these organizations have the necessary focus and raise the right kind of awareness that brings true change.
I am part of Dr. Susan Love’s Army of Women and encourage others to join. The goal is to help researchers gather useful data and to locate research subjects to fill studies in a fraction of the time it used to take. (Both those who have had and not had cancer are welcome in this army.)
I am also so proud to have been part of the “Voices of Hope” DVD project that our local breast cancer support group helped create. Thousands of copies reached patients and caregivers and the videos are now available on our website Voices of Hope.
Below is a picture of my seven sisters and I from the last time all eight of us were together. Left to right we are: Lisa, Ruth, Zita, Leonice, Ann, Mary Jo, Danita, and Aileen.
It was April of 2018, weeks after Mary Jo received the confirmed diagnosis of metastatic breast cancer. We talked and laughed a lot, drank plenty of coffee and ate plenty of food. And for the first time, individually and collectively, we also let the full impact of her diagnosis sink in.
We felt the precious and fragile nature of life and our time together. We gave cancer the finger and gave our hearts to the time we had and the rough road ahead.
Cancer has taken so much from my sisters and I, but it won’t take our spirit of sisterhood and our love for one another.
I’m still standing.
What am I doing today to take care of my own health and to help the cause of supporting those with MBC and moving closer to a cure?
With my words, I seek to honor Mary Jo and the others who have died from metastatic breast cancer. I also seek to motivate and energize us all to take actions that move us forward in meaningful ways.
Runner, writer, recovering alcoholic, wife, mother, grandmother, friend, and sister, are some of the roles I am blessed to have in my life. The picture below was taken on 9/8/19 as I prepared to start my 17th marathon. I am wearing the pink ribbon hat that Mary Jo sent me when I was diagnosed in 2008. It is one of the very few pink ribbon items I ever wear.
The sign covers my flat chest, but this is how I always run, saving the prosthetics for work and other social outings. Speaking of work, I am a licensed school counselor, working primarily with middle school students.
I have been a writer all my life; a poet with thousands of poems, a blogger with thousands of blog posts on my Habitual Gratitude blog, as well as opportunities to write a newspaper column and guest blog posts like this one.
I am a native Iowan and proud of it! My family and I currently make our home in another great state–Minnesota.
Take a few minutes to read another earlier guest post by Lisa, The Sum of All My Parts. It’s a favorite of mine.
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What would you like to ask Lisa?
Has metastatic breast cancer impacted your life and if so, how?
Whether blood and/or cancer brought you together, how do your sisters help you when it comes to dealing with cancer?