Remission… What Now?

by Gaby BerkmanSurvivor, stage 3b Hodgkin LymphomaSeptember 27, 2020View more posts from Gaby Berkman

I finished my last chemotherapy treatment for stage 3b Hodgkin Lymphoma on May 28th. I should have been elated – months of treatment, done! Officially in remission! On the path to full health! But instead – I felt a distinct sadness. In a time of quarantine and uncertainty, I had come to rely on the schedule and routine of chemo.

My nurses and doctors were the people I talked to the most. Without long conversations with them during my infusions, would I feel completely alone? And, with everything else going on in the world right now, was it even appropriate to celebrate my victory of overcoming cancer?

Although I am still very much a patient, with follow-ups and blood draws every week for the foreseeable future, or at least until my white blood cells decide they are ready to regrow, it’s just different. With chemo, I had a routine. I knew exactly what days I would be feeling okay, and what days would be harder. I knew that on Wednesdays I would have to double my water intake so that I would have good blood return for my appointment the next day. I knew that if I wanted to feel okay for work on the Monday after chemo, I definitely could not exercise on Saturday. I had my pre-chemo dinner (pasta, meatballs and veggies, very similar to my pre-marathon dinners) and my favorite chemo snacks (peanut butter crackers and Werther’s Original candies). I dreaded chemo weeks because of all of the side effects, but I appreciated the process: chemo makes me healthy.

With chemo, I felt like I had control over my health, even when everything else was out of my control.

But when I (slowly) walked out of my last treatment, I felt almost the same way as I felt when I graduated college and didn’t have a job lined up: Okay, but what’s next?

I was never fully prepared to have cancer, because that is just not something you can predict. But I didn’t have time to process after my diagnosis – as soon as I got my port placed, treatments started, and the only way I could fully understand the experience was, well, to experience it. After every appointment I would mentally check it off and immediately start looking ahead to the next one. But now, apart from my routine follow-ups, there are no clear next steps. Being a cancer patient became my identity. Moving to the next step of remission is an incredible relief, but it also feels anticlimactic.

I blame a lot – if not all – of the feeling of being let down by remission on COVID-19. I am still immune compromised. COVID means that though I am in remission, I still can’t see my parents and family. My husband still needs to open all of our mail and packages. I still can’t order take-out or pick up a coffee at a drive-through or curbside pickup. I still can’t walk where there are too many people, and I still wear a mask outside at all times, even if it is just me and my dog. Even as my state slowly opens up, I will still be in some form of quarantine until at least September, maybe longer depending on how things go with both the virus and my immune system. I am in remission, yes, but my day to life has not changed from when I was in treatment.

Other things about being in remission are anti-climatic as well. I am not being hit with chemo chemicals every other week, except my eyelashes are still falling out and I am still bald. I am in remission, but I still have trouble sleeping, thinking about the what-ifs. It will take a long time for me to feel like my normal, pre-cancer self. Some days that feels easier to process than others. I still have bad days, days where I can’t get out of bed and days where I get angry for seemingly no reason. I have days where it is not enough to reassure myself by saying “it’s okay, these feelings are normal. They will pass.” But then other days I have energy and positivity and trust the process. Those are the good days.

Early in chemo, I pictured myself coming home from my last treatment to a big party. Friends, family and a big spread of my favorite foods. Yes, this was delusional of me because my day post-treatment was always spent in bed, in and out of fevers and sleep, but hey, a girl can dream.

In reality, though, my party was my friend honking in the parking lot of the medical building, and a cake I made myself three days later. While I made a few social media posts, posing next to the balloons another friend dropped off, I still didn’t feel very celebratory. And that weekend, with the United States in unrest over George Floyd’s senseless and horrific death, it didn’t feel right to acknowledge my victory at all. After all, there were bigger issues to be concerned about.

The reality is there is no playbook for being this new in remission, just like there is no playbook for how to feel when you first get diagnosed. It truly is one day at time. I have to allow myself to be able to celebrate my win – after all, I just beat cancer in the middle of a pandemic – while still understanding that there is no right way to feel, and no right way to do things.

The world needs light in a time of darkness, and my remission is my light.

A word that has kept coming to me the past few months is “forward.” I now wear that word on a thin gold ring I bought myself, as a present for my accomplishment. Every time I look at it I am reminded that every step is a step forward. It is okay to feel uncertain and not have all of the answers for navigating remission, but as long as I am moving forward, I will be okay.


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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5 Comments

  • Ruth Arnold says:

    I totally get it. I am a stage 4 metastatic breast cancer person. I had the regular routine of surgeries, chemo and then radiation 14 years ago. Now, with my cancer having moved and returned, I only take oral meds. Everyone thinks it’s great that I’m not dealing with more invasive procedures but I often feel like we aren’t being aggressive enough. This protocol feels like I’m not being pro-active. I get it in my head but not in my emotional self.

    Sometimes treatment makes us feel we are addressing our issues and when we are away or done with them, it feels like an invitation for cancer to return. So again, I get it.

    Covid with cancer must be truly horrid for you. I can’t imagine.

    Thank you for the writing.

  • mike Berkman says:

    Gaby: you are the absolutely best. Your insight, compassion, and determination is inspiring. I will have Etta read it. Hopefully, she will get a lift from your story.
    Love to you and Owen.
    Grandpa

  • Lana says:

    Thank you so much for writing this, Gaby! I finished chemo for stage 2a Hodgkin Lymphoma in April 2020, and I have been struggling to put into words exactly how hard it’s been ever since.

    Like you, I depended on my treatment to keep a routine. It was one thing that gave me certainty when nothing else could. Now that I’ve finished chemo, I’ve been having trouble sticking to a realistic schedule. Uncertainty has crept back into my life at a daunting rate. During treatment, I pledged to myself that I would no longer make self-care my last priority. Now that I’ve started school again, it’s been tough taking enough time for myself. I feel like I’ve abandoned my own promise of putting my health first, and it’s given me immense anxiety, depression, and anger.

    Like you, I didn’t have the “dream celebration” that I wanted after ending chemo because of COVID-19. Because I feel like I didn’t really have closure to that strange and traumatizing time in my life, I’ve been dealing with unresolved grief ever since. Readjusting to “normal” (what is normal?) life has been so hard. Part of me doesn’t want to move on from that period of my life, and another part of me has been so ready to embrace post-chemo life.

    When I was still undergoing chemo, I made a list of all the things I wanted to do after chemo. I’m still adding things to the list and, with some flexibility, I’m able to do some of them. Now, I am much more aware of when I have a chance to do the things on my list, and I try not to take a single opportunity for granted. My list gives me hope for better times to come. Hope is also what gave me certainty during treatment, and it is my lifejacket keeping me afloat in these uncertain times. I hope you have a lifejacket.

    Hugs,
    Lana

  • Aly says:

    Thank you for this! Finishing treatment is such an odd and unique feeling, and it was validating and affirming to read your words. Best of luck continuing to recover with the pandemic, and thank you for sharing your mantra – forward!

  • Toba says:

    Gaby,

    You expressed so eloquently what probably all of us experience after finishing active treatment. There’s sort of a letdown after that adrenaline rush that you’ve been having in your active fight against cancer. Although I finished my active treatment for breast cancer three years ago, long before Covid disrupted our lives, I can completely relate and can only imagine how much more compounded those feelings are in our current times.

    Validate yourself! Celebrate your accomplishments and grieve your losses. Life is not the same after cancer. It just isn’t. There is no bouncing back. There is only moving forward. Wishing you much strength!

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