I was diagnosed with stage four Hodgkin’s Lymphoma two weeks before my 31st birthday, almost one year ago now. I had vaguely heard about this type of cancer before in media here and there but certainly never expected it to happen to me. I felt more disassociation than anything when I received my diagnosis. I couldn’t believe it.
It is so important to raise awareness around cancers among our age groups. I was told from the beginning that I should be glad because this type of cancer is easily treatable. In the moment, however, all I could think of was that I have still been diagnosed with cancer of all things. I believe it is crucial to teach people of all ages the importance of testing, no matter how young the individual. I experienced all the typical symptoms of classic Hodgkin’s Lymphoma: excessive night sweats, non-stop itching, some weight loss, constant fatigue, and swollen lymph nodes. I explained away all of my symptoms as one thing or another, however, I had developed a lump under my left arm that was increasingly more painful. As soon as I saw my doctor to check it out, she sent me the next day for an ultrasound, and from there all the scans, biopsies, and hospital appointments began.
After receiving my diagnosis, I can say I was only going through the motions of life. All I knew was that I had to just get through one moment at a time. I was asked to participate in a study that would administer one group of patients with regular chemo treatments and the other group would receive immunotherapy alongside the regular course of treatment. I was randomly selected to be in the group that received the immunotherapy. If you are given the opportunity to participate in a study I would strongly recommend it. I read up as much as I could on the benefits of administering immunotherapy alongside chemotherapy during the initial treatments to reduce the risk of recurrence.
I was told of a cancer support group in the hospital where I was to be treated and went there to see what resources I could find. They had very helpful pamphlets that talked about eating during cancer, common side effects, and general information related to the cancer itself. I had my family and friends read them so that we could all be as informed as possible without going down a rabbit trail on the internet. I normally will research everything, but this time I realized the initial diagnosis as well as what information I had from my doctor and the support center was overwhelming enough without the addition of more and more information. I would strongly suggest to anyone that has been diagnosed to be on the lookout for a cancer support center. It helps so much with general information related to cancer as well as possible resources in the surrounding area related to cancer support.
My treatment was 12 cycles of chemotherapy every fifteen days, with the immunotherapy accompanying every treatment. It was really hard. I had a very good support system, but nothing will prepare anyone for what chemotherapy will do to the body. One thing I did notice while receiving my treatments was that there were not many people my age there. It did make it feel lonely, but I was able to bring someone to support me for every treatment. This helped a lot to take my mind off of what was happening in the moment.
A suggestion I had received before beginning treatment was to see a cancer psychologist as soon as possible. It is something I would also pass along to anyone who has received a diagnosis. My doctor was able to put me on a list to see a therapist and it has been extremely helpful. I thought I was doing fine at coping—trying to stay positive but also realistic about everything. However, it has been almost two months now since I received my cancer-free status and it is only now that I am truly beginning to process what happened. The cancer, the side effects, and the knowledge that even though part of this journey is over, it will never truly be over and I will have to live with this for the rest of my life. I think it is completely normal to feel this way and for anyone out there that doesn’t know what’s going on or how to feel, there is no right way to process the grief of everything that comes with a cancer diagnosis. I believe this is why it is so important to be able to find a community of people that can help along the journey. Even if it is to observe the stories of others and find encouragement, it is so helpful in beginning to comprehend what is going on.
I truly hate what happened to me. The weight gain of chemo, the constant fatigue even after treatments have finished, the lack of appetite, the tremors in my hands any time I am slightly exerted in energy, the loss of memory all the time over the simplest things, and the inconsistency of recovery where even though it seems like things are improving it is still so tiring. Everyone tells me it will get better, and I know it will but it doesn’t mean it’s not hard. What I want someone who has just been diagnosed as an AYA to know is that you will feel so many things, and they are all valid. My cancer therapist told me it’s OK when sadness comes to visit, just feel the sadness and allow it to pass; try not to live in the sadness. Just get through one moment to the next; it’s the only thing you can do. It can feel so lonely even though you have the best people around you, and that’s OK. Just take a deep breath and get to the next moment and the one after that.
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Hi, and thank you for sharing your story. I wish I could scoop all of you AYA’s brave enough to share your stories and put my soon to be 31 years old adult son in the room with you for some of your insight in the hopes that the camaraderie would help ease his pain of diagnosis, treatment and after effects. He is experiencing so much of what you shared in your story. As his mother and often caregiver through his year plus cancer experience, I see the wildly fluctuating after-effects, and feel so sad and helpless to seeing the struggles and challenges this leaves so many young people, in particular my first born son, to face. It sure is hard.
Much love, compassion, and encouragement to you. ❤️
Thank you for sharing. Your story means so much to me because I resonate with it so deeply. I, too, am a stage 4 Hodgkin’s Lymphoma survivor (6 mos out of treatment). It is so comforting to know we had similar experiences and, so true, even now that chemo is over it’s never really “over.” I am still processing and unraveling in my brain what happened . You are so strong! Take it day by day and find little moments of joy whenever you can.