A Q&A Presented by the Leukemia & Lymphoma Society
Elissa Baldwin was diagnosed with acute myeloid leukemia at the age of 34. She was traveling in Europe when she was informed of her diagnosis and was told to come home to Portland, Oregon. She started treatment two days after arriving back in the U.S. She completed treatment in November of 2016 and is celebrating five years cancer free. She is the senior manager for education programs at the Leukemia & Lymphoma Society (LLS).
Lauren Wagner was diagnosed with Hodgkin lymphoma at the age of 18 in her first year of college at Grand Valley State University. She discovered a lump in her neck that led her to visit urgent care. She was immediately sent to an oncologist, where she was the only one her age and completely overwhelmed. She finished her first semester before starting treatment, and was able to return to school for her sophomore year after six rounds of ABVD. She returned full time to earn her degree in social work. She is celebrating 11 years cancer free. She is the patient & community outreach manager for the Michigan-Indiana region of LLS.
Michelle Rajotte, LMSW is the associate director of the LLS Information Resource Center and moderator of our Young Adult weekly online chat.
Michelle: If you could take yourself back to when you were first diagnosed, what would you tell yourself based on what you know now?
Elissa: I would say go to therapy early. I did not go to therapy until I basically broke down after completing treatment. I realized I was depressed when I was no longer excited about the upcoming holiday season, and I knew something was wrong. It was at that time that I approached the inpatient social worker and asked her for a referral. I wish I had gone to therapy early on in my treatment to process the emotions I was going through during all the different phases. It would have helped me deal with the trauma of a cancer diagnosis, treatment, and then moving into the uncertain world of survivorship. I didn’t know how to deal with the triggers that came throughout and after treatment. I pushed them away and remember being so proud I could do that, but my therapist (following treatment) explained that I was in therapy because I was pushing it away instead of dealing with it. I needed to deal with the trauma of it. The best advice she gave me was “Feel what you’re going to feel. Sit with those emotions. They will pass.”
Lauren: I would say utilizing every resource that is available. I was one of those patients, like many, who received a bunch of information about all the things I could have accessed, such as camps and groups and I threw it in the back of my closet and didn’t look at it. It felt overwhelming to think about so I found my own way to cope, but if I could go back, I would have participated in those programs. The resources are there for a reason! I could have used the support. I would tell myself that “It’s going to be OK” because I thought I was a tough cookie, but it wasn’t always OK, and I was alone with that. I felt so alone when I didn’t need to be alone.
Elissa: There is something to be said about resources like the LLS Community or other young adult support organizations. Organizations like Elephants and Tea and Stupid Cancer have great resources for young adults so that you can connect with others and won’t feel so alone. I am sure most young adults with cancer can relate when I say we were the youngest people in the infusion center, and the people we connected with there were far older than us.
Lauren: I would also have told myself to get a second opinion. After the fact, there are aspects of my care that may not have been necessary, so it would have been better for me to go to an AYA specialist. Also, no one discussed fertility options with me, which would have been something I would have liked to have information about or at least the reassurance that it would be OK. (Elissa: It was not brought up for me either until I asked about birth control).
Michelle: What would you want others to know who are currently going through or have finished treatment and are struggling with the “new normal”?
Elissa: The biggest thing is to give yourself grace. It’s hard to finish treatment when this thing has been so impactful and traumatic in your life, and you are expected to go back into the world where things were the same as before. It’s hard to find your place in the world because, although cancer does not define me, it will always be part of my story and there will be people I need to share it with including dating partners and new people who ask about why I do the work I do. Cancer will always be part of my story and I have worked to find my purpose after all of it. But finding purpose is not for everyone and they can feel pushed to make something out of their cancer experience. It’s not something that is required from you as a cancer survivor. A lot of people also don’t like the phrase “new normal,” but in many ways, life after cancer is just that. You can’t go back to the time before cancer in the same way as before. You have to find your own way in the world and a place in it that works for you. One of the greatest things I heard at CancerCon was “It’s OK to have a glass half-empty day because the glass is refillable.” So, it’s OK to not be OK, and hopefully tomorrow may be a bit better.
Lauren: The year after I went through treatment following my diagnosis was the hardest year I had experienced. The darkest time was when I felt like I lost my identity; I felt like I lost control over where I was going in life. But I also see the hope in that time now. I became energized by changing my major to social work and spent my money on art supplies and taught myself a new skill that calmed my mind. It was meditative for me. A lot is swirling around when you are a newly minted cancer survivor with big emotions, so it helps to find some peace. I needed to connect with others, but I was in college with kids who wanted to hang out and party. I was struggling like other college kids do, but with cancer. For newly diagnosed patients I would recommend seeking professional help/counseling and to connect with your peers.
Michelle: What is the one thing that helped you the most to get through treatment and then move on after?
Elissa: My big thing was having what I call an “anchor trip.” I had an end date for chemo, so I planned a trip as soon as my doctor allowed me to go. Two months after finishing treatment, when my immune system was better, I went to Disneyland with my best friend to celebrate finally being done. I think having something planned—even something small—helps to focus on the end. I was tired and the chemo side effects were compounding as treatment went on, but I had the trip to look forward to. Another thing was when my therapist helped me process feelings when they arose and suggested journaling; I started a journal that included pictures that brought up certain memories with those feelings for me. I wrote down all my thoughts and feelings rather than just focusing on what was happening. These entries started when my first symptoms began and went through the present day of when I was journaling. Looking back on the journal entries was very helpful to me moving forward after treatment.
Lauren: I had two communities that helped me. I found an online community when I started putting my story out on YouTube, doing weekly vlogs. Initially I started it because people kept asking me how I was doing, and I didn’t want to keep answering that question. I felt overwhelmed, like I was helping them with their emotions about my cancer. So, I recorded honestly what I was going through, and I had people all over the world reaching out to me and sending messages. They were talking about how they or a family member went through cancer, and they were thankful to have my videos showing an open and honest view into what I was experiencing. I connected with someone from the UK who I messaged with, and he told me my videos saved him from taking his own life. We stayed friends for a long time. It was powerful to connect with others online and it helped me feel ready to go back into my own life. I also found a community called Colleges Against Cancer on campus and, although it no longer exists, we were passionate about cancer, fundraising, and helping others. It helped me connect with organizations like Gilda’s Club where I found purpose. I was able to volunteer throughout college and that started me on my career path. I would have felt alone without these communities.
Michelle: What has been the biggest emotional hurdle during or after treatment?
Elissa: My biggest hurdle was losing my hair and gaining weight. I felt I didn’t look like myself. I got hair extensions that were expensive but worth it because I could feel like myself again. It took more than two years for me to look in the mirror and recognize myself again. The worst day, even worse than diagnosis, was shave day for me. It was hard not recognizing myself. Five years later, I still haven’t returned to what I looked like before. But again, I try every day to give myself grace.
Lauren: The biggest swing for me emotionally was the change in my identity; I felt I had to grieve my old life. I had to accept what the rest of my story would be and who I was in it. I was diagnosed at a time when it is really challenging for a person to find their identity in the first place. However, those emotions were not all negative; I was also hopeful. I was grieving my youth, but also had a newfound purpose and drive. As I get further away from finishing treatment, I feel more positive about the experience and have found meaning in it all.
Michelle: How do you deal with the fear of relapse, especially around follow-up bloodwork or scans? Has it changed as you are further removed from completing treatment?
Elissa: I would say the first three years after treatment were the hardest for dealing with upcoming blood tests. Early on, I would get so anxious for the weeks leading up to them; then as I moved farther away from my treatment, I would feel anxious for a few days before. I clearly remember the first day I woke up and was not anxious about a blood test happening that day. Then I had a thought that not having anxiety meant I might get bad news and was worried until I got my test results back that day. My negative and superstitious thoughts told me that this would be the day because I wasn’t anxious. This cycle of thinking produced severe anxiety until my results arrived. My five-year appointment was stressful, and although I felt confident, I was never fully sure I stayed in remission. I talked to my doctor about how the risk reduces for relapse after five years, but I wonder about other possible cancers I could get diagnosed with. I feel that I moved forward with my life and don’t know how I would go through it again. That is still very much in the back of my mind.
Lauren: I am very stubborn, so I just pushed it away. Anxiety may have shown up in other ways, but I would just push through and say I was fine. I think what may have helped most is that I educated myself, so I knew Hodgkin’s was not likely to return; this was confirmed by my doctors, so having an expert share this was comforting. I encourage survivors to talk to doctors about relapse and survivorship. However, that fear never has gone away. Last summer I found a lump and was worried about relapse. This time I knew to call an LLS information specialist who talked through my fears with me. It was so helpful and made me thankful for our information specialists.
Michelle: How do you deal with survivor’s guilt as you move farther away from treatment and see cancer friends struggling or not making it?
Elissa: Survivor’s guilt is terrible. It’s almost harder to do well with a single treatment plan when you see others go through it and relapse or don’t have success with treatment. You have moved on, but they can’t. I have a friend with Hodgkin lymphoma and she has tried several treatments and none have worked. It brings a sense of guilt that I have essentially moved forward, and they are still stuck in that cancer space. A friend I met at CancerCon passed away last December; she had been a survivor of childhood cancer, but over a decade later was diagnosed with a different type of cancer. Those things can hit you very hard. I ask why I survived this when my friends are struggling and their treatment is not working. It’s also why I work for LLS. I want to fight for my friends so they are able to find treatments that are successful, and provide that cure that all cancer patients hope for.
Lauren: I think this is a big reason I am doing the job I am doing. Every day I can give back to people in the traumatic moment of a cancer diagnosis. It is also why I am so passionate about being an advocate for young adults. I just joined the SWOG Cancer Research Network as the AYA community advocate. There is a lot of work to be done in the AYA space. Helping others because I am well allows me to be part of the solution of connecting patients to resources and ensuring they don’t make the same mistakes I did when diagnosed.
You can see Lauren’s cancer journey videos at https://www.youtube.com/user/lauren201002.
You can access LLS Young Adult resources at https://www.lls.org/children-and-young-adults/young-adults.
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