An AYA sarcoma journey

danielle My cancer journey began when I was diagnosed with a stage 3/4 (Synovial/soft tissue) sarcoma in 2013 at age 23. What I had believed to be scar tissue from a cliff jumping accident turned out to be a tumor. Quickly following my diagnosis, I went through chemotherapy, radiation, and surgery to remove the tumor in my thigh. That year was tough, my life was turned completely upside down. Going through all the difficulties that go along with a cancer diagnosis, especially all the things that uniquely affect AYAs (adolescents and young adults), was a struggle. There were so many new questions I had to ask myself.

Do I (or do my newly serious partner and I) undergo fertility preservation and freeze eggs or embryos?
Who would pay for the egg or embryo storage for the next potential decade?
Do I even know for sure that I want children? At that time in life my friends were praying to not get pregnant, and suddenly I was crushed by the idea that I would potentially never be able to get pregnant.
What if someone chooses not to be with me if I cannot have children?
What if prolonging my treatment to do IVF costs me my life?

I chose to forgo fertility preservation. I thought… it does not matter if I can have children if I die.

Chemotherapy was difficult, but there is nothing to prepare you for the experience of losing your hair. I made it through two rounds of chemotherapy before it fell out. I clung to the hope that I would be one of the lucky ones whose hair does not fall out; but alas, it did, in the middle of my vacation with my boyfriend and his family that I was meeting for only the second time. I was washing my hair in the shower and it began coming out of my scalp in chunks that slithered down my back. I was in shock, and denial. I gathered the remaining hair in a braid and I prayed that it would stay at least until I made it to my friend’s house a couple days later. Thankfully it did and I decided that I would lose the rest of my hair on my own terms. My friends and I drank beer, wore “cancer sucks” t-shirts, and shaved my head- first into a Mohawk, and then bald. Those days make you a warrior. I stayed the course and chemotherapy did what my physicians hoped it would do so I progressed to radiation.

Radiation was very challenging for me. I did not live close enough to Northwestern for the daily treatments, so I stayed with my boyfriend and his family to be able to commute. The pain from the burn was unbearable at times. It didn’t cross my mind that driving myself the hour commute from their home would still be just about all I could manage. I am reminded daily of the burn that formed across my thigh, groin, and the right side of my vaginal area, by the scar that is still there today. Next to the scar is the radiation tattoo. To me, getting the tattoo was one of the most dehumanizing moments of the cancer experience. The process is probably too inappropriate to detail on social media; it involved a condom-covered probe. I think I left a piece of me on that radiation table; day after day I had to lie spread eagle on a cold steel table and be slid around by people trying to get my tattoos in alignment. But, I survived. There are just so many things that people don't talk about -- I mean how do you discuss something like that? How do you share your trauma without making everyone feel uncomfortable because they do not know what to say? I still have not figured that out. After I completed radiation, I underwent surgery to remove the tumor. I am so grateful because they were able to get clear margins and save my leg; the surgery was so successful! My surgeon, Dr. Terrance Peabody, is a surgical wizard and my scar has healed beautifully. I love my scars because they help tell my story and show on the outside a little insight of the experience that I have lived on the inside. People are often so surprised to hear that I am a cancer survivor because I “am so young,” or “look so healthy," and "they would have never guessed."

In 2017, I had a cancer recurrence and needed to have surgery to remove the nodule that had grown in my right lung, and then the same surgery to the left lung in 2019. Shortly after my second surgery, I began having worsening pain in my lung caused by fluid accumulation, which indicated that my cancer had returned once again. At this point, it was evident that I needed more chemotherapy. It was devastating to feel like everything that I had been working towards was destroyed by cancer again. I postponed my college graduation (again), I lost my hair again, I had menopausal symptoms (again). Other side effects like neuropathy, lymphedema, fatigue, nausea and mouth sores all returned. Only this time something was different. I had hope that there was something that I still needed to learn from cancer. That there was a reason I was not yet finished. This time I tried to be better at asking for help. I allowed myself to be vulnerable. I shared my experience more openly and more widely than before. I utilized as many resources as I could, like palliative care (specifically my palliative care physician Dr. Julia Vermylen) and support from my social worker, Jennifer Carrera, LCSW.

My oncologist, Dr. Mark Agulnik, I have to thank for saving my life. He has seen me through this disease for the last eight years. As I was nearing the end of my life-max for receiving chemotherapy, he proposed a clinical trial as a hopeful shot at a complete cure. It was a rigorous vetting process to be eligible for the new treatment, but it was worth it. I proved to be eligible and agreed to participate in the clinical trial. I completed the trial in March of this year and I have been cancer-free since. After eight years, it was a relief to hear the words, “no evidence of cancer”. It never really stops though. Every decision, every pain, every appointment, and every plan in my life has been touched in some way. It has become a part of me, changed me, but I believe for the better. Yes, I have pains that I never imagined having at age 30; I have struggled with depression and fear of yet another reoccurrence, but today I am a survivor and I am proud of that. Though I had and have these struggles, I have also gained much. The aforementioned 'newly serious boyfriend' and I just celebrated our fourth wedding anniversary this past June and recently became proud parents of our fur baby, Stella Blue. I am grateful for this journey, and I simply would not change a thing. Through the highs and lows of these past eight years and knowing that the future is uncertain, I can still say, “it is well with my soul.” (“It Is Well With My Soul”- Horatio G Spafford)