Every single #MetsMonday featured post thus far has been terrific. Each one so important in message and so wonderfully written. If you’ve yet to do so, I hope you’ll take time to read them all. Such an honor to feature the voices of all the contributors here on the blog.
I’m expanding #MetsMonday featured posts to include perspectives/experiences of family members and caregivers. The impact of MBC on family members of those diagnosed is obviously huge. It’s vitally important for these experiences to be widely shared and heard too.
Today’s featured post is an interview with Twitter friend, Allen Pannell. Allen’s beloved wife Amy died in 2014 from metastatic breast cancer. I know you’ll appreciate Allen’s candor and poignant responses to the questions I asked. Be sure to share a comment or ask Allen a question in the comment section at the end of this post.
Thank you, Allen, for sharing your voice and some memories of Amy at Nancy’s Point.
1. Tell me about your wife Amy.
Amy was the best teammate I ever had. She had an infectious laugh and a “stare” you didn’t want to be on the other end of. She was loved universally by her students (she was a high school choral director), her colleagues (she was a collaborative pianist) and, of course, by her family and me.
Her students made a special t-shirt in her honor dubbed “Foster kids” (they knew her as Amy Foster). Her colleagues commissioned a choral piece, “To See the Sky” in her honor. I do my research in her honor. We met a couple guys who sat with us at dinner on a cruise during which I asked her to marry me. They only knew her for a week, but they came to our wedding. She was inspirational and infectious.
2. Tell me about Amy’s diagnosis.
Amy was diagnosed at age 42 with what turned out to be stage 3 TNBC. She did it all, chemo, double mastectomy, radiation and reconstruction — 18 months worth. During that time we got married, and she lead her choir to be selected as best in the state. They were also selected to perform at the Coke 125th (I think that number is right) anniversary celebration.
Six months after her last treatment, we traveled to Vermont to run a ½ marathon (her first). During that run, she had “weird” pains not generally associated with a run. The “light” went on. As we all know, there are no scans or blood tests, just “pay attention to your body”. Well, it turns out that she ran her first ½ marathon with a liter of cancer infested fluid on her lung. She had relapsed.
Amy had mets in her lung, spine (lost feeling of thumb), bones, lymph nodes and likely brain (never confirmed). She was given one year to live. Her first scan at three months was great, almost totally NED. Then a doctor changed her treatment based on an analysis of the receptor status of her metastatic tumors. She died three months later. My research is on the receptor status of metastatic tumors.
3. When you and she received the devastating news, how did you deal with it — how did you process that information? Was there anything that helped you do that?
Of course, we were shocked for a week. For several weeks, we sat on the couch each night and cried, wrote emails informing people, called people, prepared wills, prepared celebrations of life. After that first week, she just turned to grace and gratitude. She reflected on a life well lived, on people she had met, on students she impacted and goals accomplished. She gave her “last lecture” with a grace I only hope I can muster some day. Her only worry, was for me.
The first three months ended up being some of the most precious, real and special time we had together. Then, the dying started. The last three months were pure hell for her, me and her mom. We kept most everyone else in the dark.
The average cancer drug extends life expectancy by 2.1 months (metastatic treatment – Prasad V) Before I would take any such drug I would want to know, “which three months are we getting?”. I’d spend my life savings for the first three we had and would decline an extension of the last three.
4. Share about your experience being Amy’s caregiver. What was that like? What were some of the challenges? Frustrations? Special memories? Hardest part(s)?
Well, it was hard. Neither of us had any idea what to expect. There were always fears and pain and unknowns. Amy was sick with breast cancer 24 of the 38 months I knew her, yet our relationship still felt like the most balanced I’d ever had. She made that happen.
I did a lot of research, mostly to no avail. (The docs mostly know what they are doing). I got her marijuana to try; it didn’t help her. The worst part was the last 3 weeks when I wish someone could have explained better what to expect. Everyone was trying to be hopeful, including the docs. I wish the docs had been more realistic. For several days I thought my wife had given up, and I was mad. It turns out she just knew before the rest of us did.
She died two days before our hospice appointment. Yes, two days. We needed that a month or so earlier. I’m not mad at the docs, they are humans too, but that part could have been better.
5. What advice/tips would you offer to other caregivers?
Be open and honest, that saved us. There’s so much to talk about, and you don’t know how much time you have. When we got the good news, we relaxed a bit on our discussions, and we missed the fact that her ex was the beneficiary of one of her retirement accounts! I got to deal with that after the fact.
Don’t be afraid to talk to hospice. It’s not giving up. It’s preparing and ultimately making life easier on both of you. That was our biggest mistake. The last day of her life when the ambulance came, her mom was so stressed from us caring for her without knowing what to do, I had to send half the ambulance team to care for her.
Let friends and family help you. Caregivers need care … but it’s still about her(or him).
You might want to read, 8 Tips for Caregivers.
6. What is something you want others to know and remember about Amy?
She inspired people. She made everyone around her better. She “lived deeply”. She was a small town girl from Tennessee who played piano in Carnegie Hall.
7. What is something you want others to know about MBC?
We have to do more and do better. We all know the stats, 42,000+ Americans (10x around the world) have died every year for 30 years straight.
8. How has this experience of becoming a widower due to MBC changed you? What do you miss about Amy most? How has it impacted your research career?
My co-workers would sometimes call me “Ice” because I could handle stressful situations and “get over things” quite quickly. I thought I would get over this; I haven’t and I won’t. Life does go on. I focus on the fact that she was such a gift in my life. A gift I didn’t deserve or earn but received. I try to be forever grateful for the gift and not focus on the loss … but I don’t always succeed. She just made me better and lighter and happier and prouder. I’m blessed with people in my life that do that today, but it will always be different.
I didn’t have a research career before I met Amy. I was working on a dissertation in statistics, creating new models to predict mortgage defaults. About six months after her death, I told my committee and bosses that I didn’t have the will to finish. I was researching the decision that I thought cut her life short.
They miraculously said, why don’t you make that your dissertation. I said, “I can do that?” The day she was diagnosed with metastatic disease, was the first day I ever heard the word metastatic. Then, I did my dissertation. Now, I am designing a clinical trial.
I didn’t chose my research, it chose me.
9. What do you think is the biggest misconception about MBC?
Like many, I can’t stand the use of the word “chronic”. The “you don’t look like you are sick” comments are frustrating. We had to change doctors at one point. I told her not to wear make-up so she would look sick!
You might want to read, Let’s Stop Calling MBC “Chronic”!
Of course, most people don’t know what MBC is. Even those of us involved in it, will say “so and so died of breast cancer”. We know no one dies of breast cancer, they die of MBC or its impact.
You might want to read, Metastatic Breast Cancer, Let’s Talk About It.
10. How do you feel about Breast Cancer Awareness Month?
I’m ok with BCAM. I think it’s better than nothing. But, we need to move past “awareness” of breast cancer, spend more money on research and educate on MBC. We sexualize breast cancer too much. There are companies that exploit the month for sales, but I do think we need as much money as we can get, so those pink donations help.
I tell people that if they want a football jersey and will buy a pink one, then it will help the cause. But it will help more to just give directly to METAvivor and others.
I wear a pink bracelet with Amy’s name on it. I know the metastatic community is not that hip on pink, but I wear it to also get attention from those who don’t know that, to engage them in the conversation.
11. Feel free to share anything else you are comfortable sharing and want people to know.
Your questions did a great job of getting it all out. I’m grateful every day for people like you, advocates I meet at conferences and for those we lose each year. You guys give me inspiration and energize me. As has been said, we are in the shittiest community with the best people.
Amy had her doctorate in music and was known by her students as Doctor Foster or Doc Fo. When we got married, they called me Mister Doctor Foster. The best name I ever had.
Allen Pannell is currently teaching Analytics in the Haslam School of Business at the University of Tennessee. Allen is in the department of Business Analytics and Statistics and is the Amy Foster Memorial Research Fellow. He teaches undergraduates introductory statistics and graduate students in Statistics for Research.
At the time of Amy’s diagnosis in 2011, neither Amy nor Allen had any knowledge or experience with breast cancer. When they met, Allen was pursuing his Ph.D. in Statistics at the University of Tennessee. After Amy’s experience with breast cancer, Allen changed his dissertation from business to breast cancer. He researched a key decision that was pivotal to Amy’s care. He completed his dissertation and degree in December 2015 with new findings that can extend the life of one in five recurrent metastatic breast cancer patients by an average of nearly four years. Allen is currently designing a clinical trial to confirm his findings.
Do you have a question or comment for Allen?
What do you think is the biggest misconception about MBC out there?
What tip for caregivers do you have?
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