Transcription:
Confronting a Cancer Diagnosis and Life After Treatment

Dr. John Leonard: Welcome to the Weill Cornell Medicine Cancer Cast, conversations about new developments in medicine, cancer care, and research. I'm your host. Dr. John Leonard and today's topic will be confronting a cancer diagnosis and back to reality after treatment. Today's guest is C.C. Webster. C.C. is a recent survivor and a patient at Weill Cornell Medicine and New York Presbyterian Hospital. She's also the author of So That Happened, a memoir that offers a candid reflection on her experience with cancer as a young adult. Diagnosed with Hodgkin Lymphoma at the age of 29, C.C. is now in remission and sharing her story, her perspective and her insights in hopes of raising awareness of the disease and helping others through the battle, always with a little bit of humor. It’s really great to have you here today. I'm so glad that you agreed to come and speak with us today a little bit about your experiences. 

C.C. Webster: Thank you for having me. I am so excited and proud to be a patient at Weill Cornell, especially under your team’s treatment. Happy to be here. 

Dr. Leonard: Every patient dealing with cancer has their own unique story, their own background, their own perspective, and we’re going to get into your experiences and what we can think about and learn from in general in patients and in your type of scenario. Just tell us in a few minutes a little bit about your story as far as dealing with lymphoma.

C.C.: As you can imagine, when I was diagnosed, it was something that totally and completely blind sighted me. I had never really been sick as a child or throughout my early adult life. When I was starting to experience the symptoms, I was flying at the level of maybe it’s a hormonal imbalance or a thyroid dysfunction. When the lymphoma diagnosis came through, I was in pure shock and completely thrown out of my comfort zone and I didn’t even have the words to understand what exactly that meant to me. You guys and the team at Weill Cornell were so great in managing me through that point as well as getting me into treatment and providing me all the resources that I needed, like fertility assessments and things like that. As a team effort, we all came out the other side, but I can tell you the experience was completely different than how I thought it would be going into it. Using my background in pharmaceutical marketing, I was exposed to all of the breakthrough cancer treatments and I was actually expecting a once a day pill or something, and I thought I'll probably work right through this, it'll just be a quick flip on the radar, not a big deal, no problem, lymphoma over in six months; it's like nothing ever happened. Not how it went down. Totally different experience, but it turned out to be a really good story, and so I wrote about it and that's in my memoir.

Dr. Leonard: We’ll come to that more especially in a few minutes, but one of the things that is not unique but perhaps less common about your scenario is you were diagnosed when you were 29 and people are used to dealing with cancers and cancers are more common as you get older. Certainly, by the time most people get to be in their 60s and 70s, either they themselves or their families or friends are dealing with cancer, so that’s a whole set of issues for older people, but there's an increasing attention by the National Cancer Institute and others, including those of us who take care of lymphoma patients and other patients who have cancers diagnosed at younger ages, to deal with the unique issues of the adolescent young adult population, which is broadly defined as age 15 to 39. Obviously, there's a big range of issues in there. Give us your sense of what was particularly a challenge for you being in that age group and the things that are issues that confronted you that wouldn’t be issues for someone more typically diagnosed with cancer in their 60s and 70s. 

C.C.: So many unique challenges with any cancer diagnosis. With mine at 29, we as humans are not programmed to understand our mortality to that acute extent. That was one of the biggest foundational shakeups, to get a life-threatening disease and be at an age where your concept of your lifespan and time seems infinite and invincible, your career is just starting, everything is so exciting and growing so fast, and to be presented with a very precarious- it almost was like a life sentence, was earth-shattering at that point.

Another challenge, beyond that foundational shakeup, was this outward or projected fear of being different than your peers, and not just different but less than or broken, incomplete, that you're a bent model. It was a lot of life that was handed to you in a small amount of time. In my experience, I was more scared of the impact that all of this would have on me and the plan that I had made for myself and the career that I was building and the goals I had for myself. I was more afraid of what this would do to all of that than the loss of life itself. I probably can attribute that to you, Dr. Leonard, and the team because I wasn't afraid of dying. I didn't think that I would die, but I knew that this would have a profound impact on my life and that change was out of my control, which was utterly terrifying to a person with my personality type. 

Dr. Leonard: A few minutes ago, you alluded to the concept of all of the surprises and there are very few people who aren’t surprised by the experience of a cancer diagnosis and cancer treatment. Everyone has preconceived notions based on friends, family, etc. What were just a couple of the things that surprised you the most or the most surprising surprises in that they were so different than what you expected? 

C.C.: Again, my background came from the pharmaceutical world and here I was marketing groundbreaking therapies and drugs and really at the forefront of their science, I was helping these companies, big pharma, introduce to the world these brands specifically oncology, ironically. My understanding of what type of treatment I would go through was in accordance with those breakthrough therapies. When I first got diagnosed, I believed that cancer had made a mistake when it had chosen me. When we first sat together in that first meeting of ours, I could not believe that this was happening to me. I had never dealt with anything of this magnitude before and so my go-to reaction or instinct was to just put my head down, plow right through it, this is going to be fine, it’s going to be quick, easy and over soon, and it'll be like nothing ever happened and nothing ever changed and I’ll get my life back in six months and you, Dr. Leonard, you're going to put it all back together again and I'm going to be fine.

Like I said, not the experience living through it, you did beautifully, the emotional impact had great resonance and will continue to do throughout my life. It took one drip from that first treatment for me to realize that I had gotten this wrong, that I was going to need help and I needed to help my body through this in any way, shape or form that I could possibly imagine. I really tried everything. As you know, I tried everything that could make me feel better, less nauseous, less tired, healthier, happier and I did that totting around New York City on my good weeks. I came in for chemo every other week, so I had one good shining week in there, and I really explored all these different therapies and treatments that my gut was telling me to go to and some of it worked and some of it didn’t, but it was very much a support to me in making that commitment to myself and promising that the next six months is for me, that I am going to do everything in my power to help myself through this and I cannot go through it and pretend this is not happening. That was the biggest surprise.

Dr. Leonard: You're doing well now as we've talked about and we want to get into what that’s link in a different phase of dealing with things and its whole set of issues, but what are one or two of the top pieces of advice you would give to caregivers, to friends, family, to help people through this who alluded to needing lots of help? How can people help? In the younger age group, it’s a little different because you can go to a group of older women and half the people in the room have had or experience breast cancer, breast biopsies, etc., as an example, men with prostate cancer around the cocktail party. You go to a gathering of people your age, not many have had this experience, so what would you advise people to help a friend or a family member dealing with this in this situation? 

C.C.: I think everybody requires support in a different way be it holistically or spiritually or socially. I learned through my experience that cancer makes people feel really uncomfortable at this age and I really believed that it is based on that fear that life doesn't go to plan that you can't control a disease or what happens to you. It was very interesting to see how people and my age group specifically reacted to my diagnosis and then we’re very creative in their ideas of how to help and support. For example, one of my very best friends, sent me a bonsai tree because the bonsai tree lives for 1,000 years and flowers die too fast. It was a metaphor for my life. Very creative. Again, revolving around the idea of death, it was really interesting to see how people approached and put themselves in a supportive position which is always appreciated and well-intended. Sometimes, I would really have a hard time answering all the emails that came in, which were overwhelming and so beautiful to read, but really hard to respond to. Sometimes, the text would prompt responses or let me know how I can help you and all of these things, it was very difficult for me to take somebody up on that offer. 

What worked for me, and I think the best approach for me, was little pieces of normal. A friend called on her walk to work and just told me about their night last night and they got coffee and what they were going to do today and it was almost a way for me to live a normal five minutes while I was in the midst of chemo. Back to your question with the best advice, the best thing you can do is educate your friends and family about how you want or need to be supported. Be vocal about what you need or what you don’t want. 

Dr. Leonard: Now you're adapting to what one might turn the new reality, I don’t want to say back to normal, because I'm sure in some ways things are back to normal and in some ways things are not going to be normal again. What's that like going through the process of adapting to the new you, the life after all of this? To reiterate, you're doing well from the cancer perspective and expected to live a normal life. That’s our plan, so how do you get there, what's that like?

C.C.: I really was anticipating very much the day that you would walk into the room with the folder in hand and you would say it’s all gone and you're in remission. That moment, it was overwhelmingly happy, but I have to say that moving through that days or weeks later, coming out of treatment was the hardest part of me in it all. It was like someone had handed me a stick shift when I only knew how to drive an automatic. It was dealing with a different body, with different needs, there I was, taking myself up out of that apartment and going back to work full time in my old job and I was so eager to get back to everything that I was doing before with the same goals and the same ambition. What cancer did was it took from me my ability to be excited about that future six months ago. It robbed me of those ambitions and replaced it with something different and this feeling, completely out of my control. I'm sitting at my job and I'm so disconnected with it all and it doesn't matter to me and I can't find the importance in it anymore. I can't find the fun that I had in it anymore. That was a very scary experience because my whole life that I had built and the plan that I had designed, it went away and I didn’t know how to get it back, but I knew that I had to feel excited, I had to feel passion, I had to fall in love with my life again and I didn’t know where to start or what to do, so I quit without a plan. 

I thought I need to follow this feeling of purpose and excitement and I need to stay on that quest that I was on six months during therapy of finding things that make me feel good, so I started writing and I found purpose in that and I thought this is a good story that might actually help somebody experiencing not just cancer, but any challenge of self-development and self-awareness. It bloomed into a business. Plan B actually turned out to be pretty good. 

Dr. Leonard: You've written a book So That Happened and I think that’s around your experience and the title and your description given. How, if people want to look at that, can they find that book?

C.C.: It is available through Amazon and Barnes and Noble and any retailer that sells books as well as on my publishing platform, which is websterworks.com.

Dr. Leonard: Hopefully some people will find that of interest and of help. At the end of the day, what thoughts do you have from your experiences and from going through this process that you would say to someone? Obviously, everyone can't quit their job and go and do another field, and I think in some ways, that must have been an uplifting and also scary thing to do. What sorts of things do you think are worth thinking about for people going through their own version of these sorts of experiences and maybe having some of the same struggles that you think people should at least consider and take to heart as they try to navigate their own journey?

C.C.: That's a tough question and I've been thinking about this one especially in framing a book around my experience. I think it would be especially for the young adult dealing with a cancer diagnosis or any life-altering challenge is to be open to life not going to plan, to be open to all of the resources and people around you that can help you and to be open to listen to your body and hear what it has to tell you because I learned that the body is one hell of a force. If you can really open yourself to all the possibilities that this diagnosis might bring you, the good things, that would be my advice.

Dr. Leonard: Clearly writing was very helpful to you, other people, and I'm sure it’s a mixture of different things. Some people develop new relationships with family and friends, some people get into exercise, nutrition, different things. Any other themes, aspects of life, one way or another, that have taken on greater importance to you or have been helpful to you as you’ve gone through this, beyond the process of writing which seems to have been therapeutic in itself?

C.C.: I notice now post diagnosis and post treatment I am much more aware of things I eat, of my activity level, I'm much more aware of what my body is telling me, how it's communicating with me. I used to push myself in ways that I'd stay up all night for if I had a tight dealing or I'd skip meals or I do that high-intensity workout class in the morning, even though if I was really tired, I am now very brazen and unapologetic about what my body needs and establishing those limits and that I can attribute to the diagnosis and through treatment.

Dr. Leonard: I want to really thank you for being here with us today and I think that there's a lot out there when people are diagnosed with cancer and going through it that there's a lot out there that people read and see and it tends to be very granular; do this, don’t do this, eat this, don’t eat this. One of the hardest things is the experience and the feelings that people have and that doesn't come across so easily in what a doctor or nurse or providers give. A lot of that can only be given by talking to and hearing from and sharing the experience with others who have been through it. I think today here you’ve given us a flavor of this and I think that is a message particularly for the AYA group where having peers and others that are sharing the experience is not so easy, I think it’s an important message to seek that out for adolescent young adult patients who don’t have the network of people. I think you're doing a great service by talking to us today, and again, your book seems to be a great way to also even get more of a sense of what it was like for you and I know that no doubt people can take away some messages that'll be helpful for them. Thank you again for joining us today.

C.C.: Thank you so much for having me. Really enjoyed our discussion and sharing some of my insights.

Dr. Leonard: We’ll wrap up today’s episode. I want to encourage the audience to write to us at cancercast@med.cornell.edu with questions, comments, and topics you'd like to see us cover more in depth in the future. That's all for us today here at Cancer Cast, conversations about new developments in medicine, cancer care, and research. I'm Dr. John Leonard. Thanks for tuning in today.