I Got Through a Stem Cell Transplant. We Can Get Through COVID-19, Too.

Former Dana-Farber patient Ethan Hawes, who was treated for multiple myeloma, shares his advice.

The man checking out 6 to 8 feet in front of me was slender, with dark unbranded sneakers, his salt and pepper hair gelled back. I slowly inhaled and exhaled through my surgical mask, causing my glasses to fog up. I waited until the gentleman had checked out, and even exited the pharmacy, before I cautiously approached the counter and loosened my tightly clenched jaw.

This highly tense and energized encounter at the local drug store can be contributed to the fight-or-flight response that we all are experiencing to some degree right now when we go in public. While fight-or-flight can be new to many, it’s something that cancer patients — and those who have been through a stem cell transplant — work very hard to let go of.

In the summer of the 2014. I stood in the exact same line at this local pharmacy chain in Maine with the exact same feeling of intensity while wearing a surgical mask and gloves. At that point, though, I was bald and craving sugar, and it had been just one month after my stem cell transplant.

For patients who know what it’s like to have their immune system severely compromised due to cancer treatment, any additional exposure to vulnerability almost instantly brings back that fight-or-flight reaction.

Going through COVID-19 pandemic and going through a stem cell transplant is eerily similar. I was diagnosed with multiple myeloma at the age of 22, and my immune system essentially restarted after receiving my transplant. Afterwards, I tiptoed around corners and was paralyzed with cold sweats and fear while in public. I felt unsafe in the world because of my increased susceptibility to infection. While it was ultimately the best decision to go through the stem cell transplant for my specific case, I wished, at that point in time, that my life could go back to the way it was before cancer.

I began to feel this way while laying in quarantine for three weeks in Dana-Farber's Inpatient Hospital. This was so that I could recover from the conditioning chemotherapy I had just endured. Despite feeling cared for and protected there in that room, it was the idea of what my future would be like after I left isolation that had me most concerned.

But when I stood in line last week waiting to check out at the local pharmacy, I realized that as much as this COVID-19 experience wants to stir up old memories, the lessons I learned from that experience six years will continue to help me overcome this one.

The first of three lessons I learned: This is temporary.

For those who have been through a stem cell transplant: Remember the significance of just getting through those first 100 days the best we could? This is the one-month mark. And it’s a marathon. But it’s a marathon that we will get through. There will be that heightened sense of anxiety over the next couple of months as we all hesitantly try and regain a “new normal.”

Knowing that this is temporary, though, and acknowledging those days and moments when life feels oddly heavier than it did before, can contribute to making this self-quarantine time a little easier to manage.

Hawes and his girlfriend, Sarah.

Put down roots with a routine.

The stress that’s in the air right now can’t be ignored. I feel it. We all feel it. What has helped for me, though, is sticking to a routine that I had prior to the COVID-19 pandemic. I try to wake up and fall asleep at the same times. Sleep is extremely important. I’ll carve out some time in the day to recharge. I’ve found that turning off all electronics for the first and last hour of the day helps my mind as I’m trying to get going or wind down. Otherwise, my mind can be like a snow globe of thoughts and anticipations about current events and what the future will look like. But when I slow down and take those extra moments to either chat with a friend or a family member, get some exercise, or simply focus on my breath, I usually feel more centered and connected.

Use what we’ve learned in the past to get us through the present.

Thirdly, and most importantly, we need to be able to adapt to the current environment. Many of us have had the rug ripped out from under us before, so now we have the mental aptitude to handle this current pandemic.

Over a three year period, I resisted acknowledging that my life was changing due to the circumstances of my myeloma diagnosis. As a result, the recovery phase may have taken longer than it needed to. Once I finally accepted the inevitable change, however, I began adapting to my new normal. I connected the dots of my life experiences, that I had so long tried to ignore, with the things that I’m passionate about, and I have felt more safe and secure than I have in years.

In a world where cancer patients may need to physically protect themselves a little more than usual, this can also be a time of opportunity: An opportunity to teach those around us how to adapt to a new normalcy.

5 responses to “I Got Through a Stem Cell Transplant. We Can Get Through COVID-19.”

  1. Hi Ethan, I thank my lucky stars that my problems did not come to the surface so to speak until I was in my 40’s. So I am quite hesitant to compare as I’m sure that you have been through much more than I have. Chronic Lymphocytic leukaemia is my problem, and 10 years post diagnosis, I ended up with dangerously low levels of immunoglobulin. Better now with 4 weekly IVIG, but recently I had to go into a small general store here in Scotland. I and everyone else in the store observed the social distancing measures, but when I came out and back to my car I felt quite unwell. Getting worse by the minute, my wife and I realized that it was a pretty debilitating panic attack. Long story short I sat for a while before heading home, but it took its toll on me, more from the point that it happened at all. The sub conscious had pushed the panic button. So yes I know what you are saying, we live with this level of infection control every day of our lives, we can get through the covid19. Enjoy every day, you know how we think, even with 3k miles between our lives, they’re much the same. As an aside, I have more relatives in Boston than most other places ( Irish roots), and family connections with Dana-Faber. Take good care of yourselves guys ?

  2. Thank You for taking time to share, Ethan. I am considering an option to receive a kidney transplant via live donor from my husband, in this year. Very anxious about the impact of COVID in this scenario. Just reading your comments helped!

    Karen Angellotti, Indianapolis

  3. You hit the nail on the head Ethan. I was diagnosed with Smoldering MM last February and joined a clinical trial locally at UAB. The grand finale of my treatment was a Stem Cell Transplant last July. I went through quite a bout of depression post transplant. Weak, skinny, and bald, I did not recognize the girl in the mirror. Slowly venturing out on early trips to the store then an early dinner in a local restaurant. Always aware of wiping down surfaces, keeping strangers or even friends at a distance. Trying to explain why I could not shake hands or hug or even “close talk”. I felt like an outcast so I decided to go back to work, tennis, parties, meetings etc. I was sick four times in November/December. Trying to be normal, I had relaxed my strict sanitizing social distancing practices and paid the price. Lesson learned.

    Now with the Covid virus spreading fear among my community I seem to be the calm one. I tell my friends that I was social distancing before it was cool. Wearing a mask, not shaking hands or hugging, seemed odd before. Now I’m just one of the crowd!

  4. Wow, I can’t imagine your fear going through a public place specially in a pharmacy were you don’t know who is healthy and afraid to be judged by others. Thanks for sharing your experience.

  5. Thank you for sharing. Late night anxiously trying sleep here in the Pacific NorthWest awaiting a Stem Cell Transplant in the upcoming week to overcome Multiple Myeloma. Thanks to you and those who have posted as tonight this is a light in the darkness.

    -Chris in Seattle

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