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BY KATHY LATOUR | AUGUST 29, 2011
OK, I got really beat up by some folks on our facebook page for this line from my blog last week. "Calling a breast cancer survivor an inspiration is not something I do lightly. I think the term is awarded to many of us for just trying to stay alive. There is nothing inspiring about it. "
I was hoping to focus on Kim Stewart, a woman with metastatic breast cancer in Milwaukee who did a triathlon and who I see as someone who will inspire women with stage 4 disease not to give up. But lots of people got hung up on what is and is not inspiring. Maybe I should have said. "When I was going through treatment for breast cancer and throwing up for hours at a time and living with a mouth full of ulcers, I found it strange when people called me an inspiration. I didn't feel that way and I sure wasn't trying to inspire anyone. I was only trying to stay alive."
And to the question about whether I have been inspired by survivors I have met along the way. You bet. Too many to name but here are a few.
Marilyn had an ear to ear smile, and when she joined my support group back in 1990 I was surprised to learn that she had been living with metastatic disease for nine years. We only had a few drugs back then and she would respond for a while and then relapse. Marilyn had a joy about living that was hard to beat, and I wanted to know how she did it when she was living my worst nightmare. Well, she explained, there were worse things than dying, and one of them was dying without having lived life to the fullest. Marilyn inspired me to live life to the fullest.
Brenda's breast cancer metastasized to her lungs two years after her diagnosis in 2005. A cocktail of Herceptin and a few other select drugs put her in complete remission by 2006. When I met her at the San Antonio Breast Cancer Symposium three years ago she had just learned that a new drug called Herceptin had gotten rid of them – all of them. She was free of cancer. Another flare up of tumors in her lungs meant a new drug was added to the cocktail and once again, she was free. Then in April of 2007 she learned the cancer had reappeared in her brain. Xeloda was added and by October Brenda was again in total remission. When I saw her at San Antonio again in 2010 she was working on getting into a clinical trial and had jumped through the majority of hoops with only a few more to go. Brenda inspired me to never give up.
Suzanne was diagnosed with metastatic colon cancer at age 31 in 1998. She did regular treatment until 2004 when her cancer spread to her liver and she was told there were no more options. She went on line to her colon network and one man reached out to tell her about brachytherapy, where small spheres filled with radiation are sent directly to the liver. It worked and Suzanne was able to return to chemotherapy. In the midst of all this, Suzanne, who used to hide in the bathroom when called upon to speak in public, began talking across the country about options for liver tumors. At the same time she and her husband Ronnie bought a house in the country with horses where they and their two daughters could enjoy a slower pace of life. In addition to all this, they took in a foster child who had been born to a friend of their daughters. This year they adopted Chloe, now 3. Suzanne inspired me to keep on living no matter what you think the future may hold.
And there are so many more. I guess I could say that cancer itself inspired me to become an advocate for those who don't have a voice or need someone who knows the ropes to walk beside them on the journey.
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Wow... they are truly inspiring. I remember the chemo 101 nurse telling me to always remember that what I was about to go through would only be one small part of a great big life... and it would get rough; but I would survive. She told me to think about all the great things that I had experienced and all the great and wonderful things I still had to experience. Not t let this diagnosis take over and become who I am and what my life is all about; and that is what I did... I told myself I was sick and being treated; and when I felt like I was dying and that the nurses and doctors were conspiring to kill me with their drugs... I got through it... and I look back today... 5 years later... it was a small part of my great big entire life and I thank God every day for giving me another day free of cancer!
- Posted by Michele Barton 8/29/11 2:29 PM
Inspiring people radiate some important universal 'truth' in the way they face adversity and live their lives. You can see that they're 'on to something', something that you desparately need to figure out, something you are going to be able to use, you just know it.
Back in 2010 I was sitting in the hematology/oncology waiting room, waiting to see if my labs confirmed bone marrow healthy enough to again get chemo this week. My rare aggressive undifferentiated uterine cancer had quickly metasticized to my lymph nodes, despite debulking surgery and powerful adjuvant chemo, IMRT radiation, and vaginal brachytherapy. My prognosis was poor and my options seemed so limited. I was thumbing through a 'Cure' magazine as I waited, and came across an article about microbeads and Suzanne Lindley's cancer journey. I was immediately riveted to a point Suzanne made in the article, that you just had to find something that would allow you to survive until the NEXT new treatment came along, and that you could buy time on this beautiful earth for yourself in these little chunks of years. That hopeful message looked like a do-able plan; I could see the truth in it because I'd taken advantage of a couple of small new treatment advances since my cancer journey started in 2008. And when my name was called to start my chemo infusion, I tucked the magazine into my huge purse and later that evening into the magazine rack in my bathroom. And there it stayed over a year, pulled out regularly to be re-read, an affirming message to fight on.
And when the cancer metastacized to my liver, and PET-scans after 4 different chemo drugs showed disease progression in the liver in spite of unrelenting treatment, my oncologist asked me, "What do you want to do now?" And we locked eyes and I said "I'd just like to have a nice spring and summer." And at that moment both of us were thinking that maybe it was time to accept the inevitable.
And then my husband pulled out 'the magazine'. He CLEARLY wasn't ready for what he saw in my eye exchange with my oncologist. "What about some sort of liver directed therapy?"
And now the 'nice spring and summer' I said I wanted is giving over into fall. And I have had SIR-Spheres to both sides of my liver. And what I thought would be my final days are just the start to a busy autumn of football games and holiday gatherings, and I'm planting bulbs to greet me next spring. Because I have bought myself another chunk of time. And with luck, it'll be enough time to find my next new promising treatment.
So, yes, all of us who bravely sink onto a chemo lounger or radiation table and voluntarily allow others to keep HURTING us, are inspiring to our family and friends. But my definitive of inspiring sets the bar a little higher, too. Inspiring people CHANGE things in others. Thank you, Suzanne, for holding the light high enough that I could see.
- Posted by Linda Procopio 9/2/11 8:12 AM
Nine years ago my husband, Kevin was told, "you're too young for it to be anything serious." A few months later after going from doctor to doctor he was diagnosed with stage four colorectal cancer and had to immediatly have a surgery to remove a large, blocking tumor in his colon. The cancer had spread. Despite surgery, chemotherapy, radiation and all the side effects that go along with all of those things, he continued to work as an elementary school teacher. We had just adopted our first daughter and the image of our 18 month old daughter walking her daddy down the hallways of the hospital has been engraved in my mind. We found his angel, Suzanne Lindley a little over a year ago and she has helped us through some rough times. She truely is an inspiration. Today, Kevin continues to fight to live and be here for our two daughters. I am sitting with him at chemotherapy at this very moment and thankful for each day we have together.
- Posted by Jennifer 9/2/11 12:13 PM
I also have been inspired by Suzanne Lindley. I have stage 4 colorectal cancer for almost 8 years now.I used to live in fear before I met Suzanne. For there didn't seem to be much hope medically if I was to have another reacurrance. But Suzanne passed on to me and to many others, that there are more medical treaments out there and there is so much HOPE if we look for it.To all others out there fighting this illness, Hold Fast & Shine Like the Sun
- Posted by Brian MacLeod 9/2/11 1:23 PM
Before Suzanne, I had never heard of anyone living with metastatic disease for over 10 years. She has not only lived with the disease, she is thriving and encouraging others to do the same. You simply cannot give up hope. I was recently told that my cancer had returned for a third time and when I called her she had many options for me to share with my doctors. It is so nice to know that I am not alone in this. I am inspired by some people in this cancer journey not simply because of a diagnoses over which they had no choice but rather because of the way they have chosen to live in spite of a devastating situation. It has been two years since I was diagnosed with cancer of unknown primary and even though this new recurrence is not what I would have chosen, I am as hopeful as ever that I will live a long and full life with God's help. I truly believe that He is using medical technology and people like Suzanne to bring hope to the world of cancer.
- Posted by Ruth 9/3/11 10:39 AM
I have stage 3c ovarian cancer,diagnosed 3 years ago at age 57, and am currently being treated for my 2nd recurrence. I too have friends who call me an inspiration and I too have problems feeling that I am an inspiration. I am just doing what I (and most of my friends do when faced with adversity) do, I try found the best resource available to me, follow my doctor's guidelines and recommendations, and try to show my now 20-something sons how we act when things don't go our way, the same thing I've been doing for their entire lives. And, when I feel like I've been handed a very unfair load to carry and fall into the "why me?" s, I try to suck it up so that it won't be any worse than it already is for those precious sons and my precious husband and extended family. Like I say to my friends, what other choice do I have?
Great entry and responses, thank you
- Posted by Patsy 9/20/11 4:34 PM
I have metastatic breast cancer. What was diagnosed as stage 3A 9 years ago, has reared its ugly head 3 times since. I've had surgery, chemo twice, and radiation 3 times. I've done Herceptin every week for a year, every 2 weeks for 7 1/2 years and now (finally) every 3 weeks. Treatment will never go away, and until it defeats me, cancer won't either. But it is 'only' in my bones, more bones than I want to count, but 'only' my bones. Am I tired of being bruised and battered by treatments? yes, but I must fight, for if I give up the fight, I give up and let cancer destroy much more than it deserves to.
Every time I fight it, I say I won't anymore, but I always do. How do I go through it one more time? I just do, I feel I have no other choice. One step at a time, one foot in front of the other. Now isn't the time to give up, now is the time for grace and guts.
Am I inspiring? I don't think so, but many others do. Am I strong? I don't think that about myself either, but many others do. What I am is lucky and thankful: because of modern medicine that exists today that didn't 9 years ago when my battle started, for drug trials, for a great oncologist, for a God who is truly in control and for a group of friends and family I couldn't do it without. But mostly I'm lucky and thankful to be alive.
- Posted by Cyndy 9/20/11 5:58 PM