Remission: Part 1
The last in a series of self-portraits featured on Me, Myself and Lymphoma. June 30, 2021: Remission Day.
*Trigger Warning: Body Issues*
It has been 1 year, 1 month and 10 days since I was officially declared in remission. And I have promised to write about that day every moment since, but the weirdest thing keeps happening, life gets in the way, or the creative spark doesn’t hit, or I just can’t figure out how to put it into words. So today, on August 10, 2022, I’m going to do my best to tell my story.
On June 30, 2021, my husband Willis and I drove to the Juravinski Cancer Centre in Hamilton, Ontario, Canada, as we had been doing for 128 days (not every day — but that’s how long since we set up shop as a patient at the Cancer Centre) with the whole Aggressive Non-Hodgkins Lymphoma bullshit we’re all well-versed in now.
The remission of it all was heavily anticlimactic. I had my blood taken on the main floor in the outpatient lab. We walked up the stairs to 4F. We waited in the waiting room there. I was called, weighed and we were brought to an examination room. There we waited again. The nurse came in — in truth, not my favourite one. She read a bunch of things off my file from my bloodwork, x-ray and cat scan (maybe? Had that happened yet? What’s that about forgetfulness and chemo?); then she said some word we didn’t really understand. I had to ask “um… does that mean remission?” She said “yes” and kept talking about other things on my file. Okay. Cool cool cool the bitch is gone.
My doctor came in. He reiterated that I did awesome, my body crushed that shit, it was gone, my cells had returned to normal (JK – still massively immunocompromised – what with the pummelling of my system chemotherapy gave me) and next steps would be a pet scan in a few weeks to make double-triple-quadruple sure that the lymphoma is all gone.
Willis and I looked at each other “ummm… sooooo… what now?”
And my doctor said he’d see me in a few months for bloodwork. And then… we left.
We got into the car and I called my sister on speakerphone. We had barely pulled out of the parking space. (The parking space in which we got an $80 ticket because we parked too far in front of the metre EVEN THOUGH the person before us had fucked that up and we had no choice but to park here. Sidebar: I’m sorry, why do cancer patients have to pay for parking? What kind of absolute, total horse shit is that)?
Anyway, Tracy picked up the phone. Trepidatiously. She said “Hi, Sissy” as she had many times before that year, with often challenging and awful news to hear in return. And in my best performer voice I said “GUESS WHO DOESN’T HAVE CANCER ANYMORE?” (In my head there were jazz hands). And then… silence. I waited a beat or two. Then I said “Are you okay?” And what came next from my sibling was the first time I heard her broken in 2021. A quiet, tearful, cracking “No.” All the months of holding it in so I didn’t have to see it firsthand. All the months of being strong and solid just… crumbled. And as she semi-silently had a good weep, I told her how much I loved her and got off the phone.
I made a few more calls and heard the “YES I KNEW IT WOULD BEs” and “WOO HOOs” all while I’m pretty sure my sister was finally letting herself have a little Menty B at home.
When we walked in the door to the house, my parents were circling the hallway, anxiously awaiting the news. “IT’S GONE!” I exclaimed. And they rushed to me and praised God and hugged me. Their relief was palpable. The kids rushed at me next.
Over the coming days, weeks and months something wild happened. Something I was in no way prepared for. “You must be so relieved.” The truth is, I wasn’t. It would be a few weeks before my pet scan would confirm — in actuality — that the lymphoma was gone. And no relief would really come until then. Make no mistake, I was grateful, just not quite relieved.
We went to the cottage as we do every year (my parents, my sister + her family, Willis + our family). This year our annual photos would feature a bald-headed, no eyebrows me. I felt genuinely happy to be there. Genuinely glad to see the sun. To hear my kids play in the water. About halfway through most days though, I had to throw in the towel and have a nap. The effects of chemotherapy don’t disappear overnight and I was still very fatigued. My brother-in-law toasted my good health and my miraculous strength, calm and grace in the eye of the hurricane we’d been in. I felt good. I thought of course, that I looked pretty good, despite my ordeal. Looking back at photos I see just how ill I was and still felt.
Trace and Tom asked Willis “how did you do it?” “I can’t imagine.” And he said, he just, did. And as I’ve said many times before, he did it with grace, compassion and kindness. At the end of the day, as human beings, you just do. Because you have to. Because sometimes we have no choice. Often, we have no choice. The only thing you can choose is how you face the reality. The heavy burden that it is to be responsible not just for yourself, but for others. The weight of this world we navigate. This endless feeling that we are living in the apocalypse, but somehow have to just keeping going.
Us at the cottage: July, 2021.
On our last day at the cottage — remembering I still have no immune system, it was still mid-Covid, I’d had two vaccines, though a side effect of immunotherapy is literally making vaccines ineffective, so we really didn’t know if they had worked — I knew I had to unbubble with my family. I walked into my sister’s room as she packed her things and started to quietly cry. I didn’t want to unbubble again. Willis and I had decided to release my parents from the bubble as they didn’t have to live like we did. No one else did. So we would return to our bubble of four upon arrival at home.
This bubble / unbubble thing is unique to having a critical illness in Covid. It’s super, double, extra isolating. In many ways my cancer experience felt … robbed. My remission experience … robbed. There was no celebrating with family in friends in person. No big party to say fuck you, go away and never come back. It was just the return to “normal.”
And this is where all the tough spots come. Cancer and treatment are deeply difficult. They’re physically demanding and crushing and lonely. But at least you’re doing something. There was a comfort in seeing my doctor and my team every three weeks. Of taking my bloodwork. Of having someone to call if things didn’t feel right.
Quickly all the texts, flowers, food, check-ins, disappear as your loved ones (rightfully) return to their regularly scheduled programming. As a survivor, believe me, we do not blame you. We do not have any kind of inkling that it should be any other way. But I found I was just … floundering. I anticipated remission would be like the best never-ending party. That you would feel peace, acceptance, a bigger appreciation for your life, etc. But for me and many survivors, that doesn’t ring true. Quite the opposite can happen, suddenly you’re left to deal with what happened to you alone, especially in Covid because you’re not only emotionally alone, but physically, too. Your friends and family can’t quite understand because to them it’s this incredible relief that you’re still there. But to us, the survivors, we’re in this constant limbo.
After several weeks of feeling this way, I started looking for answers. I finally used the social worker service available to cancer patients within the JCC. It’s like, when you’re going through it, you don’t have the mental capacity to think about what’s happening to you. You can’t feel sorry for yourself. The luxury of worry disappears. The focus is purely primal: I must survive until tomorrow. I have to get to the next appointment. I have to get the next treatment. The next scan. The next x-ray, etc. And when you’re on the other side your brain has a chance to catch up to you “hey hey hey it’s meeeee remember your worries? Your mental anguish? All the traumatic things that happened to you this year and every year before that. We’reeee baccccccck.”
I found people around me were (well-intentionally) saying all the WRONG things. “You should be glad that…” “At least you’re…” all kinds of well-intentioned things. I hold no malice or anger or frustration toward anyone in my circle who saw me through cancer — you are all spectacular, super human, wonderful beings. You gave me strength. And love. And care. And concern. And were PERFECT to me. But there are just things a cancer survivor holds that cannot be explained. Luckily for me (unluckily for them) I have a few cancer besties. And we could talk to each other, and continue to, and will always.
As my hair grew in strangers would say “wow, your haircut is amazing, I wish I had the confidence to pull that off.” And you say “thanks.” But inside you think “this isn’t a haircut. This is a daily reminder that I had cancer. A daily reminder this was anything but a choice.”
I really thought it couldn’t be adequately put into words and then I came across The Cancer Patient Podcast. And as I listened to their episode on Survivorship I cried and nodded along and cried a little more. I sent it to some close friends and family. Just so, if they listened to it, they could understand a little more of how I felt. Of how I will always feel.
My mom was the first to listen and text me back. “Oh my God, I’ve been saying all the wrong things. I’m so sorry. This must be so hard for you.” And I am, was, will always be, so thankful that she listened and got it. That now I’m out to sea. I’m in the middle of the water. There are no lifeboats here. There is no one to help me.
Steadily, “normal” came rushing back. Suddenly, I was out with the kids solo again. Packing lunches. Making breakfast. Picking them up. Working while they were at school. Slowly my plate, the one that had been virtually empty — aside from the whole fighting cancer thing — for nearly a year by this point, started getting heavy again. One plate became two, three, four, five, six until I sat down with Willis and said “I can’t do this” “I’m not ready for this yet.” We started splitting the care of the kids again in a more equal way. Relying on a little more Willis and a little less me.
As the months went on I began to feel less lost. Less floundering. There are certainly moments when I can look up at the sky and just be grateful in that moment to be here. But to be sure, there are moments when I feel overwhelmed and anxious. Emotions I was hoping wouldn’t exist on the other side of cancer. But — they do — just with this weird perspective shift. I know now what matters and what doesn’t. For many years I have tried to say what I mean and mean what I said. But now… look out. I’m just saying it. I’ve always been relatively fearless. I’m one of the weirdos who isn’t afraid to jump into a new situation. Who weighs the pros and cons but relies mostly on that whole intuition thing. But now, now I’m not afraid of anyone or anything.
I was out for dinner with my dear, dear, dear, dear friend Ashley in March (a.k.a over a full year since my diagnosis) and I said something like “I had cancer” as an excuse for something and she said “you can’t use that forever” and I said “I sure can and I fucking plan to.” We were joking, of course, and as time goes on I have less of an urge to tell a perfect stranger I had cancer. When I was the shaved head mom at school pickup, I would eventually feel like I could tell the parents I was chatting with. The ones who I’m sure thought “is that a fashion choice or is she ill?” But now, I have enough hair to tuck behind my ears. So I can’t really say “I HAD CANCER” all of a sudden or rely on it as to why I sometimes feel sad or irritable.
This morning, I was packing lunches for the kids’ camp. I was making subs. I couldn’t open the package of ham. My nerves are damaged from chemotherapy. So I had to cut the package open with scissors. I still can’t open a bag of chips without the reminder that I’m a cancer survivor. I can’t leave my nails unpainted or I’m confronted with the physical lines of where my nail is healthy and where there are still remnants of the medical treatments. The little rings tell me, you had cancer, medical intervention that saved your life. If it were a different time, you would be dead. Your husband and kids and all those in your circle would be left stranded by your disappearance. They would be in a lifeboat in the middle of the water. No one would be coming to help.
It’s not just physical — I forget things now. At first, I noticed I would forget words when I was writing. Or type the wrong word. This happens less, but it still happens. I forget sometimes when I’m talking what the next thing is that I wanted to say. I’ll never know for sure if my newfound forgetfulness can be blamed on cancer treatment. I haven’t really recovered in the sense that I have yet to start eating better or exercise regularly. In fact, this morning when I went to pilates, my muscles were sore (it’s been a few weeks since I was there last) and I had to talk myself out of the sudden mental spiral.
Mid-jumping jacks this was my inner monologue:
“Shit, my muscles hurt, is there a lump somewhere impeding my blood from getting to my main artery? Can I still lift my hands above my head without pain? Kind of. Maybe the reason my left breast is bulging out of my bra isn’t just the weight gain, but a tumour?” In reality, post-cancer treatment I’ve put on quite a bit of weight. It can be attributed to: prolonged steroid use, aging, not exercising regularly and in today’s case, I always beef up a bit when I’m about to get my period. But wow. The mental tail spin is real.
Mid-lunges I thought:
“I’m so mad at myself for being here again. This is so hard. I already did this. I had to regain strength after the twins. I have to do this again? Can I do it this time around? Why did my body have to fail me? Why did my cells decide to try to kill me? What in the actual fuck is happening to me right now? Will this always be my inner monologue? Fuck I hate lunges.”
Exercising has been one hell of a trigger post-cancer-treatment. I think sometimes, that’s why I avoid it even though I long to feel strong again. To be the me I’ve been many times in my life. I love exercising. Truly. I’m a weirdo. But now — now I struggle with the thoughts that things will never be the same. That I’ll inevitably die from this shit anyways, so what’s the point. That I don’t wannnnnnna rebuild. I’m sick of being resilient. Fuck resilience. Can I have a little calm? Can I have a break between clusterfucks? (Trademark: Effin’ Birds). And now I have a visceral reaction to my body when I haul myself in and out of a plank. Fuck you. Fuck you for doing this to me.
Fuck you AND thanks for helping me have a second chance.
Fuck you AND thanks for killing those cancer cells.
Fuck you AND I know we can do this.
Fuck you AND thanks for reminding me that I’m a badass.
Fuck you AND thanks for growing that hair back.
Fuck you AND thanks for giving me a chance to rebuild.
Fuck you AND okay, fine, we can do this again.
Fuck you AND dammit, the clouds were perfect this morning.
Fuck you AND thanks for the tears that come just by looking up and appreciating that I can see at all and the sky is everything today.
Fuck you AND thanks for working again. The basics anyway.
Fuck you AND dammit I’m glad to have arms to hug my friend that I just NEEDED to see today and I couldn’t put into words why. Just because I missed her and I’m happy she exists.
Fuck you AND it’s good to be here.
Fuck you AND yeah, we got this.
Fuck you AND dammit, I’m happy to have the perspective of just HOW GOOD it is to be ALIVE.
***
For more on survivorship, listen to my episode of The Thick of It with my friend, Jo Gale.
To help understand fellow survivors in your circle (or to feel SEEN if you are one), check out The Cancer Patient: Survivorship Part 1.
To see my self-portrait series, check out my Instagram: @MeMyselfAndLymphoma