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Embrace Your New Normal: Life After a Cancer Diagnosis

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Published on February 12, 2020

Key Takeaways

  • A cancer diagnosis may change how you view yourself and the world around you—try to embrace your new normal.
  • Be open to the people and experiences that present themselves—one conversation may spark a new idea or friendship.
  • If you have been diagnosed with a rare disease like MCL, consult an expert for help. If possible, seek treatment at a clinic specializing in the disease.

Lynda Wolters was just 49 years old when she was diagnosed with stage IV mantle cell lymphoma (MCL) in August 2016. At the encouragement of her doctor in Boise, Idaho, Lynda sought help from MCL experts and spent the next eight months commuting 3,600 miles roundtrip to participate in a clinical trial at The University of Texas MD Anderson Cancer Center. In this video, Lynda speaks with Patient Power’s Suzanne Mooney about her diagnosis and treatment. She also talks about her new book, Voices of Cancer: What We Really Want, What We Really Need. Watch now to hear Lynda’s inspiring story. For more information about Lynda and Voices of Cancer, visit www.lyndawolters.com.

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Transcript | Embrace Your New Normal: Life After a Cancer Diagnosis

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Suzanne Mooney:      

Hello and welcome. I’m Suzanne Mooney from Patient Power. Joining me today is Lynda Wolters, cancer thriver and published author. We’ll be speaking about Lynda’s journey with mantle cell lymphoma and about her new book, Voices of Cancer. Lynda, thank you for joining me today.

Lynda Wolters:          

Thanks, Suzanne, I appreciate it.

Suzanne Mooney:      

I would love to start by hearing your story from the moment your life took that unexpected turn until today. What have the last few years been like for you?

Lynda Wolters:          

Completely unexpected, just totally different than I ever anticipated. I was a professional and I anticipated going through my life, getting to retirement, maybe a couple of grandkids, living on the beach somewhere. None of that’s going to happen. 

Suzanne Mooney:      

Tell me the story about your diagnosis. How did you find out you had mantle cell? Did it take a while to diagnose and then what did you do for treatment?

Lynda Wolters:          

So, my father had passed away in the spring of 2016 and within two weeks, I had lumps that literally came out on the side of my neck. I went to my doctor, and she simply said, “Well, they’re less than 1 centimeter, so, therefore, we’re just going to watch and wait and see what happens.” In the meantime, I look like Frankenstein, because I have this entire row of lymph nodes that you can just see. They’re just popped out of my neck. Within the next couple of months, I had extreme fatigue and all kinds of other strange maladies but nothing I could really point to, and I just likened it all to my father passing. 

Within three months of the first lymph nodes popping, I actually went to an ENT, because I felt something in my throat, something catching, and I kept clearing my throat and coughing and wondering, “I don’t know what’s going on, but there’s something going on.” The doctor looks down my throat and says, “Oh my gosh, your tonsils are huge!” And I knew that was a problem, because my tonsils were removed when I was a kid. So, within two days, I had ultrasound, biopsies, scans, CTs. A month into this, I had my bone marrow biopsy, I had been given a diagnosis of lymphoma, and it did take 30 days thereafter to get the specific diagnosis of mantle cell.

When I got that diagnosis, boy, that’s a tough one to hear. You’re 49 years old by two weeks, and you’re told the average person survives five years. And my kids are early 20s, and I had just gotten married the year before, so I was pretty devastated. My doctor, fortunately, was an incredible man and a remarkable physician in that he told me, “We can only give you standard of care here.” I didn’t know what that meant, but standard of care just simply means that is the standard no matter where you go. It’s kind of like the bar, it is what it is, it’s just nothing great. It’s just what we do anywhere you go. 

He told me, “You’re too young, you’ll need to go elsewhere.” I don’t know many physicians that will turn away a patient and he did. He encouraged me and with his encouragement and help, I found a clinical trial at MD Anderson in Houston, Texas. I commuted 1,800 miles one way. I did that on a weekly basis. Sometimes it would stretch to bi-monthly. I did it for eight months, did a clinical trial, and then I came back home to Idaho, where I was living, and did my in-patient chemotherapy. My chemotherapy was a week at a time. I would check in on a Monday, check out on a Friday or a Saturday, and having different chemicals dripped the whole time.

When I finished that first full year of all of that treatment, I did two years of maintenance, and I am just finished with my maintenance. So, now I’m watch and wait.

Suzanne Mooney:      

Had you looked into other facilities besides MD Anderson or why MD Anderson over one of the other top cancer centers? 

Lynda Wolters:          

I did, I actually did. I looked at Stanford, I looked at the Huntsman in Utah, because that was very close to me, and I looked at Seattle Cancer Center in Seattle. What I found though was, for the most part, these places were following the protocol of MD Anderson. When I looked deeper, I learned that the leading mantle cell provider is in Houston. There are two or three very, very pinnacle providers in regard to mantle cell lymphoma. This particular one just happened to suit my needs, was the closest, and got me in within two weeks.

Suzanne Mooney:      

You’re living in Idaho; you’re commuting to MD Anderson. What was that like? Was the clinic trial what you expected it to be? What was that experience like? 

Lynda Wolters:          

The clinical trial was the hardest thing I’ve ever gone through. Let’s put it in perspective for other women out there. I had natural childbirth more than once and going through the clinical trial and the pain that I incurred because the medication was so strong, I weighed 97 pounds, I was very, very thin, very ill. And I was given 540 milligrams of the same trial medication that a 300-pound man was given, and it was not allowed to be adjusted at that particular time. What it did was it attacked my joints, and apparently only a couple of people had ever had joint problems on this particular clinical drug, and I was one of them.

After I was done though, it is now one of the statements in the black box, the list of could-be side effects, it is now listed as severe joint problems and myalgia and this kind of thing. Unfortunately, I now live with arthritis, something I had never had before. I have it in my neck and my back. I have it in my wrists and my fingers. It’s rough. It was the hardest thing. If you were to ask me would I do it again, absolutely.

Two reasons, Number one, I firmly believed it saved if not lengthened my life, and number two, how else are they going to know for the next people? There’s no way to know unless people are willing to go through clinical trials. Because I’m willing to take the drugs that are afforded me from people that tried before me, I am willing to go through the pain and see what I can do to help. 

Suzanne Mooney:      

What would you say to someone who has just been diagnosed? After everything you’ve been through the past few years, is there something that you wish you would have known early on or someone would have told you? 

Lynda Wolters:          

Yes, again, two things pop instantly to my mind. The first thing is you are not alone. You absolutely feel like you are. You’ve read the numbers. You can’t stay off the Internet, none of us can. You’ve seen all the doom and gloom. You know, especially if you’re a younger woman, that you are a real minority in this group, but you are not alone. Do your research, find other people. Find other people in that same lifeboat with you, because we’re there to help you. There are not that many of us out there, but it’s like a family. It’s truly like a tribe. So, that’s the very first thing. 

The second thing is going to sound so cliché, and I never would have believed it if anybody would have told me. But the shift that happened to me after being diagnosed and the person that I am now, compared to the person I was before, is phenomenal. I was never a bad person. I’ve never even had a speeding ticket. I truly color in the lines. I worked in a law firm for 30 years. I am that person, but as soon as I was told that I had a terminal, incurable disease, my whole perspective changed for the better. I absolutely have such an amazing appreciation for every single day. I literally wake up, and I am amazed. It’s not I have to get out of bed, it’s I get to wake up again.

I’m amazed at the colors and smells and sights and sounds, and people are just fantastic. It doesn’t matter your size, your shape, your color. They’re beautiful. I never saw that, because I was so wrapped up in myself, my career, my chores, my job, my dog, my this, my, my, my. Pretty soon, I realized oh my God, there’s a whole world out there I need to figure out in five years, because that’s what they told me. So, that shift, embrace it. It will happen. There is not a cancer patient I have spoken with that has not had some positive shift from being diagnosed.

Suzanne Mooney:      

Speaking of cancer patients that you’ve spoken with, let’s shift gears a little bit and talk about your book. What is it about and who should read it?

Lynda Wolters:          

Everybody should read it, not even just cancer patients. I say that not because I wrote it, but because that’s what I’m hearing and that’s what people are telling me and writing about. The book came about, I went to a camp for adult cancer survivors. The camp was here in Colorado called Epic Experience. It’s for any adult cancer survivor/thriver. It was a life-changer for me, and it just spurred on this book by circumstances that are interesting. My chemo brain was so rough, I had to walk around with a little notebook and take all these notes and somebody said, “What are you doing, writing a book?” and I said, “Maybe. “

That core group that I went to camp with, I asked them all the tough questions, “Talk to me about your difference in your sex life. Talk to me about what you really wish people would stop saying to you. Talk to me about what you wish people would actually do to help you,” these kinds of things. I spoke with dozens and dozens and dozens of patients and came up with this format for a book wherein one part of each section is written for the patient and the other part is written for the caregiver.

It has been so well-received. People have said things like anybody who’s going through an aging issue can understand this or anybody with Alzheimer’s or anybody going through any kind of issue could really benefit from the book. The book is not my story; it’s every cancer patient’s story.

Suzanne Mooney:      

If someone wants more information about Voices of Cancer or where to buy it, where should they go?

Lynda Wolters:          

Well, of course, you could go online to your favorite online shopping place. You could always just go to my website at LyndaWolters.com and find it there as well.

Suzanne Mooney:      

Wonderful! We’ll include that link on the Patient Power website below this video so it’s easy for everyone to find. Lynda, is there anything else you want to share that I haven’t asked you that you’d like people to know?

Lynda Wolters:          

I think just embrace where you are and come to terms with your new normal. Stop trying to get back to who and where you used to be, because you’re never going to get there and it’s okay. My body is not the same. My ideas are not the same. My thoughts, my feelings, nothing is the same and I actually don’t want it to be the same. It’s better on this side.

Suzanne Mooney:      

Well, thank you so much for speaking with me today. It has been an absolute pleasure and we are grateful to you for sharing your story.

Lynda Wolters:          

Thank you, Suzanne, I appreciate it.

Suzanne Mooney:      

Thank you for watching. I am Suzanne Mooney from Patient Power. Remember knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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