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Excerpt from "One Door Closes: Overcoming Adversity By Following Your Dreams"

Corrie Painter: Take a Look and Let It Go

by Tom Ingrassia and Jared Chrudimsky

One Door Closes: Overcoming Adversity By Following Your Dreams captures the inspirational, highly emotional stories of 16 individuals who have triumphed over seemingly insurmountable obstacles to achieve their dreams. Through first-person accounts, these courageous survivors describe their personal approaches for living their lives with vision, courage, determination and passion. They share the wisdom they learned along the way—often the hard way—wisdom readers can use on their own journeys. Many are sharing their stories publicly for the first time. Also featured are 10 holistic self-assessment tools readers can use to design their own, personal blueprint for success. 13 of the individuals profiled are “ordinary people who have achieved extraordinary things.” Also profiled are Scherrie Payne of The Supremes, June Monteiro of The Toys, and Mary Wilson of The Supremes—who shares a special message of healing and hope that forms the Epilogue of the book.

Corrie Painter-one of those profiled--is a wife, mother and biomedical researcher at the University of Massachusetts Medical School. In 2010, she was diagnosed with primary angiosarcoma of the breast—and extremely rare and insidious disease that affects only about 300 people per year, and has a dismal survival rate. Today, she helps to raise hundreds of thousands of dollars for cancer research.

Three years after her diagnosis and treatment, Corrie is cancer-free and shares her story here:

In February of 2010, I found a lump in my breast. I thought the worst-case scenario was that I had breast cancer. Best case was that I had a lot of resources at my disposal. I went for diagnostic tests at the University of Massachusetts Medical Center, and my doctor told me that it wasn’t breast cancer. He had a report that indicated I had angiosarcoma, which is an incredibly rare form of cancer. He didn’t believe the report, and wanted to send me to Dana-Farber Cancer Institute to get some experts involved my case. I went to Dana-Farber still not sure what my diagnosis was. They did 10 biopsies, straight through the tumor. “We don’t think you have angiosarcoma, but we’ll still take out the lump so you don’t have to worry about it,” I was told. On May 20, I went in for a routine lumpectomy. When I woke up from surgery, I had a partial mastectomy because, as I was told by the surgeon, “It looked really ugly, and I’ve never seen anything that ugly that wasn’t malignant.” The breast tissue was sent to pathology for testing.

A week later, I still hadn’t received any test results. I called Dana-Farber and was told it was definitely intermediate-grade angiosarcoma.

Time is relative, depending on what stage of life you are at. My whole sense of timing throughout this process was so full of gravity. Time was weighing so heavily on me, and I was not even sure where in time I was.

After it was confirmed that I had angiosarcoma, I was scheduled for a radical mastectomy, with this second surgery intended to get the clean margins they needed. Then, it was a matter of what kind of follow-up treatment I would receive.

This was so rare—there are only about 300 cases of angiosarcoma diagnosed worldwide each year. My medical team wasn’t sure what the next step should be. They had no idea how to treat me. So, they looked at me and said, “What do you want to do?” To which I responded, “What do you recommend?” “We don’t really know because there are aren’t enough people who get this.”

Now, as a scientist, this threw me into a tailspin! So I tried to find the answers. I looked all over the place—Memorial Sloan-Kettering, UMass, wherever there were experts. Ultimately, I decided to do a few rounds of chemotherapy, but to stop before having any serious side effects, so that if the cancer came back, I could use that same chemotherapy treatment again. At that point, the prognosis was still so grim. Because so few people survive angiosarcoma, the experts just don’t know what the long-term outlook is.

I am 3 years out from my surgery, and still cancer-free. But I know it could come back at any time. I live day-to-day knowing that. I’m fine and there is no evidence of the disease, but every bruise, every pain, every headache, every sore throat, every sneeze, could signal a recurrence. One of the biggest obstacles I have is overcoming that sense of impending doom with every single little thing.

Really, though, I still don’t have any real fear of dying. I truly don’t. I have complete peace with the thought of not being alive. In terms of my life, I have done all that I could do, and then some—and did it successfully. There is nothing left for me to accomplish, no “golden ring” that I have to snatch before I die. I don’t need to live to do one more thing.

When I was diagnosed, my first thoughts were for my children. How do I look at them, so young and innocent. Those were very tough times for me. Now, I only live for my children, because I want to raise them to be strong and happy, whatever direction that takes them in. I know that being here will help me to direct them—to get to those goals they want to accomplish.

I decided immediately that I have no control over this disease, other than trying to stay as healthy as I can. What I DO have control over is my reaction to it. Even if this disease takes me out in a month, I have that month, every second of it. If I am in physical pain, I don’t have to shout out. If I am in psychological pain, I don’t have to cry. I can learn how to take it. I can take those challenges and turn them into strengths. And by those methods, I can take those situations and turn them into life lessons for my children.

How did I do it? I decided right from the start that, if I am going to have cancer and if I’m going to be bald, we are going to have some fun with it. So we had shaving cream contests. Each girl would take one side of my bald head and see who could make the silliest thing on it with shaving cream. I bought stick-on rhinestones and let them spell things out with them—and then we went out in public to see people’s reactions. I bought the most ridiculous wigs and wore them in public for fun. In these ways, I took a completely devastating reality and made it so it wasn’t so scary for them.

I demystified my disease for them. They weren’t embarrassed by it. My natural inclination was to be upbeat and positive, and to have as much fun with my babies as possible. I keep a blog, so that when they grow up, they will know my thoughts and feelings. They will be able to reflect back and say, “WOW! She was dying and she had a smile on her face. If she could do that, I can do anything!”

It was still very painful, though. But it was never a choice to give in. I intrinsically know who I am. I looked at my children and said, “There’s no other option.” Every parent wants to be the best parent for their children. The best thing for them is for me not to give in to pain, and fear, and depression. I don’t know if there’s a source I tapped into for that, other than my love for my children.

My daughters were two and four when I was diagnosed, so they had no concept of mortality. That’s why I chose to do it the way I did. We didn’t talk a lot about life and death. What are they going to see? They’re going to see Mommy be bald. They’re going to see Mommy with one breast. How do I make that not scary for them? That’s why I went the tack of silly.

They would ask questions, and I would say, “My breast was sick, so the doctors had to take it off,” and, “in order to keep from being sick, I have to take medicine that makes my hair fall out.”

My little one is five now, and my older daughter is eight. They both know the word, angiosarcoma. They hear me talk about it all the time. They see me helping people in our support group, making phone calls, going to meetings.

I am doing research on melanoma so that I can fund research into angiosarcoma. The girls come to my lab sometimes and help me set up my experiments. They understand what cancer is, that it makes you sick. My older daughter knows that Mommy helps other people with angiosarcoma, and that they die all the time.

I use my experience as a lesson every time they face a challenge. To get them to step back from their problem. To see it for what it really is, and to see it from another perspective. To see it as really little. If they can see their problem as being little, they can pick it up in their hands and throw it away.

I want them to see the problem for what it really is in the grand scheme of things. I want them to be in the moment. They don’t have to be scared of that math problem. They don’t have o feel the anxiety build up inside them, because that math problem isn’t hurting them, and it won’t embarrass them. They can understand that the math problem is very small in the grand scheme.

You can transform whatever you have learned into any medium you want, and transfer it to someone else undergoing a completely unrelated problem, big or small. The meaning of that lesson is to truly understand yourself and your interpretation of the situation—your understanding of how to go about solving those problems for them.

I was at the tail end of completing my Ph.D. when I was diagnosed. I thought that I might just stay a perpetual graduate student. The thought of writing my thesis, the thought of having to get new insurance, of having to leave the lab I was so comfortable in, and the people I loved—the thought of starting anything new was terrifying. And I think my department and the school probably would have allowed me to stay on without graduating. It was scary to think of change at that time.

But I had to try to find others with my disease, to get their perspective and understanding of what I was going through. They were hard to find, because there were so few of them. I finally found a Facebook group—Angiosarcoma Cancer--started by Lauren Ryan, who had received the same diagnosis the year before I did. There were three or four others in the group. I became instant soul mates with all of them.

Lauren told me that she had started the paperwork to form a 501( C )3 non-profit organization to help those with angiosarcoma connect with available resources. We met in New York City, and decided that we wanted to form Angiosarcoma Awareness, Inc. Our goal was to raise $10,000 through fundraising that first year, and to use that as seed money to put on bigger fundraisers in the future.

As a biomedical researcher, I knew the harsh reality that you can’t really do research with a few thousand dollars. We needed hundreds of thousands—millions—of dollars to make an impact. My mission became to raise the money and, as the scientific officer, to figure out where to put it to get the most bang for our buck.

Within the first couple of months, we raised $40,000. We do fundraising on our own, and have a number of members in our support group who also put on events to bring money into the organization. We also have grateful donors who, even when they die, still want to give. We have formed a partnership with Memorial Sloan-Kettering Cancer Center, by participating in the Cycle for Survival annual fundraiser. Last year, we raised $117,000 with Memorial Sloan-Kettering cancer center, and another $100,000 through our own initiatives.

The money raised in partnership with Memorial Sloan-Kettering Cancer Center funds clinical and basic science in labs dedicated to angiosarcoma research at Memorial Sloan Kettering. We can tell the people who raised that money exactly what their money is doing, the papers published, etc. It is a perfectly closed loop. There is no question that they have made an impact with their donations, and that galvanizes people. It’s the same with the money that comes in through our own charity. I am in direct contact with the scientists, and am very involved in the whole process.

Our organization, and the fundraising, is wonderful. It’s a novel way to conduct and fund research. We help angiosarcoma scientists to collaborate where they might not otherwise. This helps to create synergy within this small field of research.

Our Facebook support group now has over 1000 members—friends, family, and those affected with this disease. It has been transformative. There were so few resources at first. We found the resources. We can now share those resources with the people who need them. We have made the connections with the researchers and the doctors. We can cut through the red tape—our partners are compelled to help us.

We have brought everybody together. We are saving lives by being so quick. We can provide people with the resources they need within a day or two of their diagnosis. Through the support group, we compare notes—who are the best doctors, what are the side effects. Who needs support because they just lost a child. This is an unbelievably tragic disease. It’s unbelievable that there’s a place to go where people understand. It helps to take the edge off the exquisite pain.

You must be seen by a team of experts as soon after diagnosis as possible. You have to get the proper treatment and follow-up care. Early diagnosis is important.

I was fortunate to have an excellent surgeon at Dana-Farber. He cut out everything and got the clean margins he wanted. There were no malignant cells in the bordering tissue. Now, I do all that I can to stay healthy and clean. I do things because I’m superstitious! I am careful about my diet. I eat raw berries and cinnamon for breakfast, a raw lunch, and olive oil-sauteed vegetables over protein-enriched pasta for dinner. Every day. I drink a lot of green tea. Ultimately, the thing I believe most is that if I am to be cured, the reality is because I had a good surgeon. That’s what motivates me to get people to the experts as fast as possible.

Throughout my whole life, I have always been a searcher. I was always looking for the meaning of life. When I was a teenager, I was a horrible student—but I always read books way beyond my comprehension. I didn’t understand them at all. I was searching for things, but I didn’t know how to look.

I was always jaded and cynical. One day, when I was in my mid-twenties, I woke up and noticed that my face was distorted. I realized it was anxiety-driven. “This is ridiculous,” I thought to myself. “I have absolutely nothing to complain about. It was at that point that I made a conscious decision to visualize myself and whatever problem I’m facing, and take a side-step away from it. My philosophy is, take a look and let it go.

My advice to you, based on my experience? Stop beating yourself up. In fact, stop thinking about yourself so much. Take the time to look at things outside yourself. What does it feel like to be that leaf on the tree? What does it feel like when the wind blows over you? This opened me up to everything else. There’s a great big world out there.

Treat yourself like you would treat your best friend. You wouldn’t belittle your best friend, would you? Then why belittle yourself?

And when you do engage other people, really engage them. Look in their eyes. Notice their facial expressions. What are they trying to tell you? If you walk away from a conversation only remembering what you said, then you haven’t really engaged.

These are all the self-taught things that helped me to overcome my teenage-y angst—the spoiled rotten little problems I though I had and had to overcome. It has helped me to become less jaded and cynical. It has brought me to a path where I can live in the moment. I want to to suck the marrow out of life! That’s why, when I was diagnosed, I was never scared of it. I was already a solid person when I was diagnosed.

Whether you are in a good place in life, or in a bad place, there is always work to be done. So if you are hot with adversity, you are on solid ground. For me, that made all the difference in the world.

So often, when adversity strikes, we just drift with the debris. We swim so hard—up with every wave, and down with every wave. We don’t know where we are, because we just drifted along aimlessly. And we’re no closer to where we wanted to be in the first place. We latched on to that false sense of security—the debris—and got nowhere.

When I was diagnosed, I was cast out to sea. But, I had a solid mooring. No matter how big the waves got, I knew exactly where I was, and if I just held on, everything would be still and calm again. I knew I would find solid ground.

Don’t take life too seriously.

 Tom Ingrassia is a motivational speaker, success coach, author and musicologist . He is president and CEO of The MotivAct Group® LLC, which offers holistic personal and professional development programs. Jared Chrudimsky is a licensed massage therapist and owner of Revitalize Massage Therapy®, in Worcester, MA. Jared was recently named one of Worcester Business Journal’s “40 Under Forty” business leaders for 2013. Tom and Jared share a passion for guiding their clients achieve a healthy, harmonious, more balanced life.

Purchase Info : www.amazon.com/author/tomingrassia-jaredchrudimsky

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