Because I Can

by Hanna MadsenSurvivor, Adenoid Cystic CarcinomaJune 1, 2020View more posts from Hanna Madsen

I was in Paris when my dad called to confirm that I had cancer. I had just accepted a position in Afghanistan with a French NGO and was in training. I thought about flying to Afghanistan anyway. The position was only for six months. I could treat it after. No one knew I had cancer. There were no symptoms. If it got really bad, I could always visit the doctor over the three month break. Instead, I flew home. I still don’t know why, exactly. By the time I landed in the US, MRI scans and a visit to an oncologist were booked. 

I couldn’t taste it or feel it, but half of my tongue was a cancerous tumor. It had been there for a year. Or two. Normally, surgeons remove cancerous tumors. However, if the surgeons removed this tumor, then the surgeons would also have to remove my entire tongue. And the floor of my mouth. And my voice box. The “Tumor Board” (a group of oncologists) voted to try two 21 day cycles of chemotherapy instead. After that, six weeks of radiation. In short, I was definitely not going to Afghanistan anytime soon. And I was really pissed about it. 

I moved into a tent in my parents’ backyard. It made everything feel less permanent. I whatsapped photos of the turkeys in the backyard to friends in Afghanistan, Lebanon, Mexico, Serbia, and Syria. And for five days, I voluntarily injected myself with poison. My ears felt like they were on fire. I threw up. I spent entire days on the couch watching TV. I grew so weak that taking a shower was a Herculean effort.

And then the impact of the chemo would fade. I would begin yoga again. And then biking again. And then running again. And eating bread and butter. And then again I would inject myself with poison for five days. The second round of chemo, I ended up in the ER. All for a tumor that I couldn’t feel. The chemo had to work. I had to get to Afghanistan. 

The chemo didn’t work.

And no, I couldn’t just leave the tumor where it was. It was cancer. It could be spreading into my throat and lungs. It could be there now. I had to cut my tongue off. And maybe my voice box. I would never be able to speak English intelligibly – let alone Arabic, the language I had poured years of blood into – again.

I confirmed the surgery date, found a cheap flight, and flew to Mexico City for a few days. I drank mezcal and fresh fruit juice. I practiced yoga. I ran. I spoke what little Spanish I knew to strangers. I returned to the US the night before my surgery. My last meal was at midnight. I think it was a buttered bagel. 

In the pre-op, the anesthesiologist was really cute. He was from the Midwest, like my ex. He thought my work abroad was really cool. He thought the surgery would save me. My parents found an article about another woman who’s tongue was cut off for cancer. It was really hard, but she learned to speak and swallow after a few years. Maybe I would be that lucky.  

I woke up terrified and very high in the ICU. I couldn’t breathe. My shoulders, thigh, and neck HURT. I was too afraid to sleep. If I slept, maybe I wouldn’t wake up. But if I didn’t sleep, then I would have to be awake. In pain. Unable to speak. Unable to move. Needles everywhere. With no tongue. No future.

Every hour, regardless of whether I was awake or asleep, a nurse came in to stick this tool in my mouth. It beeped if it detected blood flow. It sounded like the radio between stations or a whale calling. I looked in the mirror and all I saw was a bald pumpkin-sized head with two blank eyes staring back at me. For a day or two, another patient I couldn’t see kept screaming.

You see, while I was asleep in surgery, a small army of medical professionals had sliced open my neck from ear to ear and removed my tongue. And some other stuff. And then they cut open my left leg from hip to knee and put my thigh muscle into my mouth. And then they put in a feeding tube next to my belly button. And they plugged a tracheotomy tube into my throat. I’m lucky because they didn’t have to remove my voice. It was just a few centimeters away. 

I moved to a regular wing of the hospital in the middle of the night at some point. I’m not sure when, anymore. I started choking. On what, I don’t know. It’s not like I was eating anything. Maybe I was choking on my blood? It took awhile, but some nurses came in and gave me some oxygen and other stuff. Maybe it didn’t take awhile, but time stops when you can’t breathe.

I choked three more times after that. Once on blood, twice on vomit. It’s kind of like being stuck in a wave under water. You don’t know when you will catch your next breath, so you keep very still and wait until you can take another small breath. 

I got used to the hospital. Every morning, the doctors would come in at some ungodly hour. Like seven. I used to wake up at 4:30am/5am to run, but that was pre – whateverthiswas. Seven is just cruel. No time to shower or brush my teeth. Not that I could do either. I would ask them what I had to do next. I figured that the surgery was like the marathons that I used to run. You run to mile seven. And then mile 10. And then mile 18. And then it’s over.

After the doctors left, my stepmom would help me shower in the sink. And then I would slip into Netflix. You see, I didn’t actually live in the hospital. I lived in Netflix. In the football fields of Friday Night Lights. In the glitzy New York offices of Mad Men. When I couldn’t watch anymore, I looked at the flowers on my bed. Tried to remember what fresh air tasted like. Dream of eating real food. Of running in the woods. Of working abroad.

I didn’t know whether or not I would ever do these things again, but I liked thinking about them anyway. And three times a day my family or friends would walk me. It really hurt. It is really, really hard to support a head the size of a pumpkin. 

The doctors let me go home when I could clean out the tracheotomy and manage the feeding tube myself. I hated the trach. I hated coughing with it. I hated cleaning it every few hours. I couldn’t bike with it on. I couldn’t run with it on. I couldn’t breathe with it on.

I made a small hospital room in my parents’ living room. I was a small puddle of misery with a tracheotomy surrounded by plants and tissue boxes. Every day, sometimes several times a day, my parents or my friends walked me. We walked farther and farther. It still hurt to support my pumpkin head, but I got stronger and stronger. And my pumpkin head got smaller and smaller.

I cried every day. I was never going to Afghanistan. Hell, I was never going to speak normally ever again. 

The trach came out. I started trying to speak and swallow every day. I practiced reading words in English aloud. Not Arabic – my heart couldn’t bare it. I choked on bread and butter. A friend said that maybe I wouldn’t be able to work abroad again – how could I possibly keep a feeding tube clean in a city with limited clean water supplies and health services?

I told my friends on Whatsapp that I was almost back to normal. I wasn’t. 

I started radiation when I could swallow a cup of coffee in public and walk for several hours every day with my aunts. I drank fancy lattes and hot chocolates. Because I could. We walked all over the city. Just to see it. But by week four, I was spontaneously projectile-coughing snot out of my mouth.

I sequestered myself in an apartment and only came out for radiation sessions or spin classes in a dark gym. I watched all ten seasons and change of the Great British Bakeoff. I told myself that I would eat all of it when this was over. I learned how to make maps on ARC GIS. I hated everyone.

Somehow, at some point, the radiation stopped. I moved back onto my parents’ couch. Literally. I started a puzzle with pretty fish labeled in French. And then somehow, at some point, I woke up. And I was SO HUNGRY. I poured as much liquid food that my body could physically handle plus whatever meals I could swallow. I started with bread and butter. Obviously. I trained for food like I had trained for marathons – same routine, every day. No exceptions. Bread and butter healed me.

My plants and I moved into a real bedroom. With a real bed. I started running again. I stopped crying every day. My voice got better and better. My head got smaller and smaller. My feeding tube was removed. I started doing job interviews. 

I eat whatever. I drink whatever. I can speak now – even sing. I can do Zoom cocktail hours and Skype calls. I’m not saying any of this is easy. Nothing is easy when your tongue can’t move.

I’m not saying I know who I am. I’m not grateful for this experience. I’m not sure that I learned anything. I don’t value life any more than I did before. But I run 12 miles every day, practice yoga three to four times a week, and cycle outside two to three times a week. Maybe I’m training for a marathon? I dunno. And I got a job in Afghanistan – I don’t know when I’ll move out there because of COVID, but I got the job.

There is still so much to do – so many countries to see and so much food to eat and so many things to say. All I know is that I’m going to wake up tomorrow. And I’m going to practice yoga. And I’m going to run 12 miles or more. Because I can. 

 


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

  • Chip Palmer says:

    Hanna, you’re strength and resolve are amazing! A lump in my throat and tears in my eyes as I read this.

  • Tina says:

    Wow lady, what a story! Thank you so much for sharing. I understand how cancer takes away the expat experience-we (my husband and two young girls) lived abroad for 6 years. I found out I had cancer while in the UK and we had to move to the US for treatment (I was diagnosed with an aggressive state IV non Hodgkin lymphoma). I hated the fact that we couldn’t live overseas anymore-I still do! But I hope that one day we can go explore the world again 🙂 Thanks again for sharing!

  • Basha says:

    Hanna, you are braver, stronger and, smarter than most of us. Thank you for sharing this personal note. It his close to home as my mother continues to battle her fourth cancer, you and her are an important daily reminder to never give up. Stay strong my friend.

  • Ronda Hedrick says:

    Hanna, I’m an ACC survivor as well. 7 years ago a tumor was found in my larynx. I had some of the same fears. Like you, I took it day by day and got back to nearly where I was before cancer. I look over my shoulder often to see if another tumor is coming. So far, so good. Some day you will appreciate the strength you have gained. Best wishes and God bless!

  • Margaret Duff says:

    Hannah thank you for sharing your story. You actually give hope to us all by sharing the highs and lows of your journey we realise JUST KEEP GOING really is our mantra blessings to you 🌸🌸🌸

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