As a young adult, surviving cancer can be a very isolating experience. Many people feel alone in their fight, facing an unfair uphill battle. Recently, I’ve found a lot of comfort in sharing my experiences with other young adult survivors. Although we’ve all faced different challenges and are in various stages of recovery, it’s easy to bond over similar experiences and our shared survivor status. I’ve left every meetup with young adult survivors feeling inspired by their stories of both hardship and bravery. We are able to laugh about topics that may seem taboo to others, and find comfort in each other’s encouragement.
Today, I’m joined by two other survivors to bring some of the topics that we talk about at Survivorship Meetups to the internet, so that other survivors and fighters can hear our stories. I hope this inspires others to find a young adult community that they can connect with.
Rebecca: I am a 22-year-old survivor of Non-Hodgkin’s Lymphoma. I was diagnosed at 19 years old when I was a sophomore in college and am currently 3.5 years out from treatment.
Paola: I am a 42-year-old survivor of triple-negative breast cancer. I was diagnosed at 41 in South FL and moved back to Boston to get treatment at Dana Farber. I have been out of treatment 5 months.
Annmarie: I was diagnosed with Acute Lymphoblastic Leukemia in November 2012 when I was 20 years old and midway through college. I heard about my recurrence in December 2017. Between all of this, I finished 2 degrees and started a job in healthcare improvement.
How far out from treatment are you, or are you still in treatment? How much does cancer still affect your day-to-day life?
Rebecca: I am now approximately 3.5 years out from my last treatment. At this point, I don’t have any side effects and the chances of recurrence are very low. The only signs left are the scars on my chest. I would say that cancer doesn’t really affect my day to day life, but it definitely has a strong influence on who I am and how I live my life.
Paola: I have been out of treatment since this January 2018 so about 5 months. Cancer still affects my daily life in that I still have to manage a significant profile of symptoms and side effects left from chemo & radiation including: full blown early-onset menopause, nausea, fatigue, anxiety, all around pain in my bones, muscles, some severe headaches and severe pain/burning/tingling caused by chemo induced Neuropathy. I have been fortunate enough to be able to manage most symptoms through holistic and naturopathic approaches and am doing very well.
Annmarie: My initial treatment was completed in December 2014. I had about a 3-year break from treatment. During that time, I had to go to Dana Farber for labs and seeing my doctor, and it slowly spaced out from every month, to every 3 months, to every 6 months. I think I did a lot in that period of time to try to not let it affect my day to day life, but when I started having pain in my legs and needed to use walking aids until I could get surgery, being a cancer survivor felt really prevalent. I am currently back in treatment; for the first few months I continued working remotely to help take my mind off of the cancer and try to maintain normalcy.
Do you talk openly about your (past or current) treatment or is it something you try to avoid talking about?
Rebecca: I talk openly about my treatment with close friends and family. I still struggle with how to tell new people in my life about my history of cancer. On one hand, it’s far in the past, and on the other hand, it’s important information for someone to know when they’re getting to know me.
Paola: I talk openly about my past treatment and current post-treatment experience because is important for me to “own my cancer story” and drive the narrative of my survivorship. As an active corporate professional and entrepreneur, driving a narrative of “empowered survivorship” rather than “disempowered victimhood” is extremely important to me. I also want to use my experience to help others by raising awareness, and a great way to do that is speaking openly about my experience, so I do so every chance I get.
Annmarie: I previously was very private about telling people about my diagnosis. I did a lot to make sure only close friends and family knew, and I didn’t share anything online. I think I became more open about it after my First Descents trip where I met other young adult survivors. In general, that trip helped me accept my cancer journey and talk openly with people that understood. With my second diagnosis, I was again very selective about which friends were brought into the know. However, I feel like I can be more frank in talking to them about what’s going on. I also started doing an update email to my close friends and family which was a significant change for me.
How do you tell new people in your life that you had/have cancer?
Rebecca: For me, it’s always a “read the room” situation. I never know the best way to tell someone, so I usually just wait until they ask about the scars on my chest (I have three obvious scars). If I’m feeling awkward or uncomfortable, I can always pass it off by saying I’ll tell someone the scar story another time.
Paola: Like ripping off a band-aid, I just do it when it feels like the right time to share and that the audience is ready and/or open to receive that kind of information. Again, I always I try to convey my experience with the intention to Inspire-Inform-and Incite, which not only encompasses my intention, but is also the tag-line, mission and vision of my Health & Life Coaching entrepreneurial endeavor and upcoming inspirational health & wellness blog/site launching in August 2018.
Annmarie: Fortunately, I chose to work in a line of work where having a cancer diagnosis can be beneficial or impactful. However, I didn’t go singing it from the rooftops or disclose up front. After I got to know some of my coworkers, there were a few people who I thought I could trust and who would see my journey to the same benefit I did. Other than work, I think I’ve been very skeptical when forming new relationships about sharing. There’s one recent friend in particular who I didn’t share with up front because I didn’t want my journey to define me. However, once I got re-diagnosed, I thought it was appropriate to let her in as we had grown closer and I found her to be someone that would be in my support network.
Do you have any physical signs from treatment (i.e. scars), and how do they impact your life?
Rebecca: My scars are really noticeable on my chest, and it was something I was really self-conscious about for a long time. For me, it wasn’t about how they looked. I was mostly anxious about people asking me about them because they’re so obvious.
For example, once I was at a party in college and a drunk girl comes up to me and grabs my arm. She says, “oh my gosh. You HAVE to tell me the story about those hickies on your chest!” In that moment, I was mortified. I didn’t want people seeing me at a party and just seeing my scars (or in this case, mistaken hickies). I remember laughing it off with my friends, but inside I was freaking out about how people viewed me.
Paola: I do have a scar on my left breast from the 2 lumpectomies I underwent. Inspired by the Japanese art of Kintsugi of fixing broken pottery by filling cracks with gold to highlight the history as a sign of enhanced beauty rather than hiding them as something negative, I see my scar as a sign of enhanced beauty because it symbolizes my struggle and therefore my growth. It also reminds me of all the unintended gifts cancer brought me like knowing the amazing women in this group, and the depth and meaning it added to many of my relationships with friends and family.
Annmarie: I have 4 scars from ports/picc lines, but I think that the scars that are most significant for me are the ones on the side of my upper thigh from my hip replacements. You really can’t avoid these in intimate moments. I had only one awkward moment, but I think overall people are just afraid to ask. I always said I could joke that I got a butt reduction.
What was your experience with hair loss and growing it back out post-treatment?
Rebecca: The hair regrowth process was painfully slow. For people that are able to embrace the short hair and totally rock it, you are amazing! For me, it was a point of insecurity for a really long time. If I could go back and do it again, I would find a hairdresser that understood what I was going through and make a plan for growing it back. Instead, I went to a barber and asked them to do their best to shape it by cutting off as little as possible.
I was not confident about it at all, and hated my short hair with all of my being. Any bad hair day was a reminder that I was different from all the other young adults my age. It killed me that it was something I was constantly insecure about, while other girls didn’t think twice about throwing their hair into a braid. To this day, I wake up every day grateful to be able to put my hair in a ponytail and feel confident when I look in the mirror.
Paola: Since I had long hair, I tried to make my hair loss as fun as possible by experimenting with haircuts I would have never considered before, by finding I hate wigs and just rocking my bald head, and finally by growing the Mohawk I always wanted now that my hair is starting to grow back. This has helped me make a very depressing and devastating part of treatment, deeply joyful and as outlet for my creativity, my anger and my grief through my artistic and fashion expression.
Annmarie: Losing my hair the first time was a lot more difficult than the second. I was 20 and thought my hair was one of my best physical features so naturally I was devastated. Shaving it the first time was like ceremonial with a bunch of family around and done by a nurse. I wore wigs any chance in public, but after a while I found them to be a nuisance and very fake looking. The hardest part about it growing out was that it was pretty grey. The second time around, I had a friend come over and shave it privately and I haven’t even been wearing wigs. It’s been a different and liberating experience. My boyfriend liked the buzz cut and now bald head. I wear a lot of knit caps because it’s cold, even in summer.
How long did it take after treatment for your life to go back to “normal” (if at all)?
Rebecca: I think I would argue that life doesn’t ever really go back to “normal” after treatment. I still carry around a unique perspective and it affects my day to day choices and actions. The best barometer I have for normalcy is having my energy levels back and not having to take any more medications.
Paola: For me, “normal” is a relative term that means different things for different people. Rather than “normality”, my focus was wholeness and balance pre-cancer and became my obsession and means to survive treatment, while promoting my best quality of life during the most uncertain time of my life. Through those hard mental, physical and spiritual battles during treatment, I’ve cultivated the most whole and balanced state of my life. Another one of the many gifts cancer has left me.
Annmarie: When I was first diagnosed, I was in the middle of college and my goal was to get back on track as soon as I could. I got to return 9 months after diagnosis, but it wasn’t the same. I just turned 21 and couldn’t drink or go out to parties and I had to live alone. Soon I was walking around with crutches. I think that life started to feel normal around 2016, when I started dating my boyfriend and finished grad school. I think emotionally and spiritually I’ve changed, plus gained maturity.
Has your cancer experience affected your mental health?
Rebecca: I remember the day that I looked in the mirror and didn’t see a cancer survivor looking back at me, it was just me. And the scary thing was that I didn’t recognize myself. I didn’t really know myself outside my cancer experience, and that was terrifying. Finding myself again was something I really struggled with, and it was a huge mental barrier to happiness for a long time.
Paola: Absolutely! I already had a long history of depression and anxiety pre-cancer, that was well managed. However, treatment shot my anxiety levels to acute heights that have required some new strategies and lifestyle changes to manage.
Annmarie: Luckily I was already accustomed to therapy prior to diagnosis, so I didn’t experience the fear of asking for help which I know is common for many survivors. After diagnosis, anxiety became more prevalent for me. Additionally, I think I tried to cope by using control. The things I felt I could control, I would go crazy over getting it just right. A lot of people might say, why obsess over the little things when there are bigger things to be focusing on, but I feel like I can have some control in my life while my health was out of control.
Have you had any recurrence scares? How do you handle the uncertainty?
Rebecca: I’ve had two recurrence scares. Let me tell you, they were terrifying. The idea of going through chemo again and losing all the progress I made is basically my worst nightmare at this point. I’m extremely lucky because my chances of recurrence are really low. This allows me to appreciate life and not always be worried about a recurrence, but when something feels really off in my body it’s hard not to jump to conclusions.
Paola: Is too early for me to worry about recurrences yet although I am keenly aware of the aggressive nature of my type of cancer and it’s tendency to recur. I’m also prepared for the difficult decisions and conversations a potential recurrence may bring about. I don’t worry about it though, and am focused on making the most with the opportunity of the time I have now. Of why I’ve survived now as the importance of that reason is more compelling to me than what what may or may not happen at some future date. I try not to dwell on the past or worry about the future. My peace of mind, heart and balance is absolutely grounded in the NOW.
Annmarie: I didn’t have any scares besides my actual recurrence, which was completely unexpected as I had no symptoms. For the first 3 months, I was very depressed and not optimistic. I feel a lot more anxious before tests this time, and I don’t see that as really decreasing after getting the all-clear like it did last time. It’s definitely a big difference compared to last time where I was a lot more emotionless.
Many people talk about having a newfound lease on life as a cancer survivor. Do you feel like you gained new perspective on life?
Rebecca: Absolutely. It’s hard to explain exactly what it feels like to be a survivor, but I can make me feel isolated or different from other young adults. I know what it’s like to have your whole life ripped away from me, and to be betrayed from my own body. Of course, this also comes with a huge new sense of perspective. I find it important to find a balance and remember that what I went through was hard, but it could have been infinitely harder. So many people go through terrible amounts of pain in their lives, and I’ve met a lot of other survivors who need to continue their treatment. That makes me grateful that what I went through is over, and I make the conscious choice to try to leverage that perspective to make my life happier and healthier.
Paola: Not necessarily “new” but my life perspective is definitely enhanced in that I am much more intuitive, conscious, trusting, driven by faith, focused on fulfilling my sacred contract, and deeply rooted in the NOW more than ever.
Annmarie: I think I wished for it more than I feel it. When I first got sick, I was definitely on a path that may not have been the most positive long term. Often, I feel that diagnosis was there to get me on a more positive track, but changed things more physically than emotionally or mentally for me. The biggest change for me happened after my trip with First Descents, where I felt like I needed to cherish and be fully engaged with every moment in life. While I have changed significantly, I think I still have some work to do in that department.
What does survivorship mean to you & what has been your experience within the Young Adult (YA) survivor community?
Rebecca: Survivorship means that I have the opportunity to dictate how my experience with cancer shapes my life and how I chose to live my life post-cancer. It includes small things like becoming a vegetarian and big things like choosing to raise money for cancer research with Dana Farber. On a personal level, it involved choosing happiness and figuring out what I really value in my life.
I recently connected with many YA cancer survivors through various workshops at Dana Farber, and now I coordinate social meetups for our little community. It has been a very fulfilling side project that I hope to expand in the future.
Annmarie: I think there are two aspects of this. I’ve felt pretty compelled to be involved in the YA community. I’ve traveled to two different retreats, First Descents and Kolina Orchard, where I had the opportunity to connect with other YA cancer survivors. I’ve also tried out support groups and meetups thru my cancer center. Meeting others and feeling comfortable talking about cancer openly has been really beneficial and impactful for me.
Another part of survivorship is the physical care. Through some of my YA cancer networking, I met a staff member of a AYA survivorship clinic at Tufts Medical Center. The team there looks at your treatment plan and sees what late effects you may be at risk for, such as neuro/cognitive abilities, and your heart function. Based on that, they recommend a plan for getting baseline testing to see where you stand with those risk areas, and then get set up with specialists as needed. I got the opportunity to tell my story and work with the survivorship clinic on The Chronicle.
Paola: Survivorship to me is both an opportunity and a responsibility. An opportunity to continue to pursue the Fulfillment of my mission on the planet which is essentially to be of service and leave a better world than I found through my natural gifts and talents. Secondly, a profound responsibility and urge to help others through my experience by raising awareness and promoting access to screening, treatment, and all around resources to anyone needing it but especially under-served populations like poor people without insurance, non English speakers, minorities and other high risk populations. I find meaning in my struggle by fulfilling the responsibility to help others through what I’ve been through.
Rebecca is a Boston-based contributor who is proud to share her experiences as a Young Adult survivor of Non-Hodgkins Lymphoma. She’s passionate about healthy living + the environment, and in her free time enjoys running, reading, and exploring the city.