moonglow overhead turning slippery bridges into whispered dreams floating down country backroads Mississippi memories
What do you do when you’re the youngest person in the room? Do you straighten your shoulders and make yourself taller? Do you tilt your ears, hoping for wisdom’s osmosis?
Last week, I returned to Rochester, Minnesota, for my radiation check-up. I was two years out from radiation this November, so the radiation oncologist said I can now continue appointments with just my local medical oncologist. It’s a sign of progress and movement beyond active treatment, which feels great! Of course, as with all things cancer-related, it’s never a simple celebration.
In October, my local medical oncologist switched me to twice yearly appointments. I had been seeing him every 4 months since my last infusion in spring of 2021. Prior to that, I had been seeing him every 3 weeks since January of 2020! Yes, every three weeks. First for six rounds of the hard stuff, and then for 12 additional infusions I referred to as “chemo lite”, much to the delight of my oncology nurses (that would be Herceptin and Perjeta, for my oncology-minded compadres).
My oncologist seemed excited to tell me this– “cancer-wise, you’re doing very well!” preceded the news that I would now only need to come in twice a year. I didn’t want to let him down, as I assume oncologists deal with a crap-ton of bad news on the daily, so I believe I said something like, “Yay! Thank you so much!” But I can’t recall my exact words, because I was feeling a weird mixture of emotions that still don’t make sense to me.
Yes, obviously, it is good to move forward. It is incredible to be in remission, to be living my borrowed time. But is it easy to do so?
The short answer is “no”. Survivor guilt is a huge thing. Why are so many other young women I’ve met since my diagnosis dying of their cancer? Why am I one who gets to live? I’m nothing special; just one weird redheaded writer and teacher of thousands of others. I have to do something special now, though, right? Why else am I still here? No pressure.
Then there’s the super weird element of time. I went through my cancer treatment at the start of the pandemic. Like I mentioned earlier, I saw my oncologist and two favorite oncology nurses every three weeks. Actually, I saw the nurses a bit more often because I returned for my trusty Neulasta shot the days following chemo. I think they sort of became superheroes to me. In my eyes, they saved my life. Then came the time where they just said, “Well, see you in four months” and I felt myself floating out of a space shuttle without a tether.
There’s so much good about remission. Obviously. I’m not dying anymore, which is pretty solid. I’m not actively receiving toxins into my veins or protons directly into the thin skin over my ribcage, both of which are nice bonuses as well. But it’s a more difficult place than people expect it to be. There’s a lot more dealing with anxiety and mental trauma in this place than I expected. In treatment, I was so busy being a warrior that I forgot to freak out about all that was happening; I apparently saved that for later. Oops.
To return to my earlier question, what do you do when you’re the youngest person in the room? In my local cancer center, I’m always the youngest, but the room is small, and I can tuck into a corner. At my radiation appointment last week, I entered the expansive, crowded waiting room of the Jacobson building and found myself surrounded by people twice my age. I know I’m a weird one, a rarity. I know you’re not “supposed to” get cancer at 32, especially with no prior health issues, but then again, is anyone ever supposed to get cancer?
I think it wouldn’t bother me if these older folks would just chat with me or just ignore me. Instead, they stare. The medical assistant calls my name, and more than 30 gray and white heads around the room turn and stare with pity in their eyes. When the assistant asks my date of birth, still in the lobby, I have to awkwardly announce my 1987 birth year to a room of people who will share birth dates from the 1940s and 50s when they’re called in. I do stick my shoulders straight back, though. Cancer wasn’t my fault. I didn’t cause any of this.
When I took my First Descents trip this May, I was so excited to meet other young survivors and thrivers. It was an incredible and life-changing experience. The words from one of the leaders on the retreat stuck with me: to paraphrase, when you’re diagnosed with cancer in your 60s, 70s, 80s, you’re welcomed by friends and family into a club. Yes, it still sucks, but you’re part of a well-established club of people who have done the whole cancer thing and can situate you into their numbers. When you’re in your 20s and 30s, you’re the founding member of the Cancer Club. None of your friends or family your age have had cancer. They’re scared to even hear the word, and maybe now they’re scared of you. You’ve reminded them that we’re not immortal in our 30s; we never are, even when we’re too busy with work and kids to be reminded of our own mortality.
At the time, I wasn’t sure what to do with his words. They spoke powerfully to me, and I immediately assumed I needed to use them to help acquaint other young people who entered the club nobody wants to be a part of. But there’s something else, there, too, for those who may be in that more established cancer crew: If you happen to be an older survivor, and you come across a young survivor in your cancer center, instead of staring, why not offer them advice or a reassuring head nod? Instead of pity, consider sharing a powerful story that lets us know we have a shot at being alive in twenty or thirty years, or reassure us that we don’t have to save the rest of the world just because of our bad luck and guilt. Most of all, simply be grateful that you didn’t have to be the founding member of the club.
Words and Coffee Writing 
This sounds like a true ordeal none of us think about until we’re there. When I had a scary biopsy, I had thought to myself, “Well, there are toddlers with cancer that I have already outlived. I guess I should be grateful more than mad at you, God.”
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Definitely. There was one child (I would guess only five or six years old) who was also receiving radiation during fall 2020, so I would occasionally see him with his parents when I was in the waiting room. It kicked me out of a slumpy feeling because I realized how much I already got to experience before the diagnosis. As a fellow parent, I felt for this child’s parents as well. I really hope we can completely eliminate childhood cancers; I am a regular supporter of St. Jude’s and a couple others these days. Those poor kids are the founding members of a club they can’t even understand yet.
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So heartbreakingly true.
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I don’t know how to respond to this. I have had 5 “biopsies” – all benign. But the waiting and the angst prior to the histopathology report was enough to make my heart tighten as I read this post. I’m so happy that you are in remission. I hope this next year is one of good health and happier times! ❤
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The anxiety after a biopsy is certainly intense; I don’t think there is any way to prepare for it unfortunately, but I’m glad you have received good news after each wait! Thanks for reading and for your kind words. ☺️
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Thank you for sharing. Yours is an experience I don’t (as yet) share, and your writing is like a window into another life. I honestly have no idea what it’s like, or how I would feel and react.
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I hope you never have to go through cancer. I told my students the only good things that come from cancer, especially young adult cancer, is that you meet some of the most incredible people and that you mature exponentially quicker than your peers do. Still, probably only a 1 out of 5 stars experience overall. 😉 Thanks for reading!
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Congrats on the good news! Though you shouldn’t feel survivor guilt, because if that were the case, then I should feel health guilt for not having an illness. Maybe you’re too empathetic, which is good. And bad. 😛
Regarding the ‘young’ thing, sometimes I’m the oldest in the room, but I look the youngest. And these younger people treat me like I’m younger. I already have no idea how to act around people. This just makes it worse, lol. So that was a great question to ponder on.
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Thanks, Stuart! I think as a cancer muggle, I never thought much about people with cancer, but now that I’ve been there it is difficult not to feel this guilt. I’m probably too empathetic as well, which is both good and bad, like you said. Thank you for reading and sharing your thoughts!
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Get rid of the guilt, it does no good. Even though my cancer was cancer-lite compared to many (okay, I feel guilt about even calling it cancer when I know so many had/have it so worse) I came out of it with a greater appreciation for each and every present day, person, experience. Not in a manic gotta go go go way, just, ah, yes, life is good. I was welcomed into the club that no one wants to join and the members were very helpful in letting me know what to expect in all aspects. It made the experience a very powerful one, being with those club members and my radiation ward-mates. Unfortunately I get tapped on the shoulder now and again, find I will always be in the club as an advisor and mentor to friends newly inducted. It seems as if you are doing much here as a club leader, and that is a lot.
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Thank you for sharing. I agree that it’s a club we don’t necessary get to leave, but hopefully we’re able to help others as mentors and advisors The guilt is really difficult to get rid of, but I am trying. I’ve recently seen a statistic that cancer survivors need 2 months of recovery time for every 1 month of treatment. I was in active treatment for 16 months, so I guess with this logic, I will need 32 months of recovery time– I’m slowly chipping away at it! 🙂
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I only required a lumpectomy and radiation, so it was only six months from diagnosis to end of treatment. That was seven years ago. My next door neighbor, friend, and colleague underwent radiation at the same time as me and she is also free and clear from stage 4 cancer. There are good stories to tell, and yes, even then people not in the club don’t always “get” it and don’t always want to hear us talk it out.
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I’m glad you and your neighbor friend are doing well! I also had a couple of friends IRL that went through breast cancer the year before me, and I really appreciated their guidance when I first received the diagnosis. I know some people don’t like it when we mention cancer, but it’s important for us to talk or write through; it’s part of our reality and what made us who we are today! Plus, it’s therapeutic. 🙂
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I actually started writing poems about it cancer when a dear friend was dying of it and this neighbor friend had just gotten diagnosed. The first friend’s daughter (another club member) encouraged it, but then when I was diagnosed a few months later I wrote more poems and put them together in a book. I’d send you it if I knew your address. You can go through my contact page if interested.
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Sure, I will reach out!
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