Learning How to Face My Lymphoma Relapse

Learning How to Face My Lymphoma Relapse

For some reason, it has been harder to write about this time. The last time I went through this, the words just seemed to spill out of me like a river, inexorable and uncontainable. I wrote and wrote and wrote until it felt as if there was nothing left to say. I thought I’d explored every crevice of cancer and its impact on my life. But I was wrong.

There is much more to say. Except, I don’t really know how to say it this time. The second time is so different. The second time hurts in ways I never felt before. I had healed. Through time and self-reflection, I had pieced myself back together, mended my broken spirit. I washed the trauma away through travel, nature, time, and therapy — through love and a lot of spiritual healing. My trust for life returned and a new relationship with myself was born. I had survived. I had overcome something more difficult than anything I ever imagined I’d experience in my life, let alone at 23, and that birthed self-respect, even self-admiration. I began to appreciate myself, to think of myself as strong and formidable. I stood up again, granted on wobbly legs, but I stood up. And then life came and knocked me down again.

Five percent is what the doctor said. A 5 percent chance of it coming back, and I was in that unlucky percentile. I found out I have cancer again. I have stage 2 Hodgkin’s lymphoma in the exact same place (neck and chest), after two full years of remission, after my hair has grown back and my scars have healed, and after I’ve regained my confidence and begun to trust life again. After I’ve started a new career path, made the decision to move to a new city, to live in an apartment on my own like a real, live adult. It can only be described as debilitating.

Why? I’ve sat with this question for over three weeks now. It’s the one thing I cannot seem to shake. The tears have started to decrease (slightly), my anger has slowly begun to soften, and even the grief seems to lessen day by day, but I cannot seem to rid myself of the question, “Why?” The truth is, I know there’s no way to answer that question. Why does anything happen to anyone? There’s no reason. And yet, somehow that doesn’t make it easier to sit with this new reality. Chemotherapy all over again, losing all my freshly grown hair, this time a more aggressive regime, a month in the hospital, a stem cell transplant, all the side effects — again. And on top of everything, a high chance of infertility, which has meant 10 days of hormonal injections and blood tests and scans in order to freeze my eggs. My life put on hold for the isolation, the separation, the feeling of being different from everyone when all I desperately want more than anything is to be normal.

One day I felt on top of the world, like my life was moving in this exciting new direction, and the next, everything had fallen apart. I know inherently this is just another hurdle in the road and I know, again, how privileged I am to not only be receiving quality medical treatment but that my cancer is treatable. And yet still, somehow that doesn’t stop it from hurting. When you think you’ve finally left an illness like cancer behind and it returns, the pain is inevitable.

That said, this time I’ve decided to be quite public about my relapse, creating a video and sharing it with the world about a week after my diagnosis. My decision was spurred by the realization that although this very unfortunate thing has happened to me and I have no control over it, I do have control over how I choose to face it and how I choose to empower others.

Even though a lot of days I feel alone and isolated, I feel I have to speak loudly. I have to take my biggest fear and turn it into my power. We seem to think, particularly in our youth, that we’re invincible and that our health and wellness are guaranteed. But the truth is life is incredibly precious. I’ve learned that the hard way, twice.

So, as I begin this chemo journey, as I dig deep for the bravery to get over this mountain a second time, I speak to all my fellow cancer friends and fighters when I say I feel you and I see you and I love you. And to my friends and family and all the people out there who may read this or hear my message, I hope you realize the value of life and every moment.


Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.

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  1. Thanks for writing this. It brought tears to my eyes. I want to be on your mailing list if you have one, as I want to read more of what you have to say.
    I was diagnosed with Hodgkins Lymphoma almost three years ago at the age of 53. That cancer almost killed me, and then the treatment nearly killed me when I developed septisemia. The treatment worked, though! That experience changed my life dramatically. I am healthy strong and work every single day to not be afraid of a relapse or of a diagnosis of another type of cancer. I remind myself every day to live the best life I can, and to do things that bring me joy.

  2. Michelle McDermott says:

    Hi Michelle, I found out this past March that I’m also relapsed after just over 2 years CR. Found in a the 6 mo. CT scan and enlarged nodes in my left neck area. So, I had another biopsy/surgery of a neck node to make sure I had not transformed and it showed it was still fNHL, stage 1 & 2. No other symptoms though, so I am on watch & wait until symptoms start to pop up or next scans indicate tumor progress.
    I get what your saying, this time is different, it is … I felt betrayed by my body. Two years! What’s that? 20% of fNHL patients relapse within 2 years of treatment, I was never going to be them. I had myself convinced that I was one of the few that would never need treatment again – HA! I’m also looking at an ASCT for the next treatment, and it doesn’t look like a fun ride as you’ve said. I feel for you and this road you must travel, especially at your young age. I hope you find a complete remission or cure with this transplant and never have to worry about lymphoma again!!!!

  3. Lauren says:

    Thank you so much, Michelle. I am also a 20-something lymphoma survivor and just got treated for my 2nd occurrence. I had about 2.5 years between my first need for treatment and now. I have NHL, follicular, slow growing – but it’s permanent and will come and go my entire life.

    I got diagnosed at 23, treated at 25, and now treated again at 27. Your feelings are very similar to mine – the pointlessness of the disease, the absolute isolation and pain, and the grief. The first time around, I felt hope that things would get better and stay better after treatment. Now, the doubts and uncertainty are massive. I go in next week to see the results of treatment and talk about next steps.

    My nodes are largest in my pelvic area and neck (and airway). It’s been a difficult journey due to the locations of the nodes. A lot of survivors I know haven’t had recurrence, which can make me feel alone… I’m done thinking of cancer as a “transformational” experience, and now I just think of it as pointless suffering. It’s refreshing to see your thoughts since, like me, you’ve been through this before (and recently, too).

    One day at a time. It’s what I keep repeating to myself.

    Sending love <3

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