Breathe In, Breathe Out

Four years ago today I was celebrating my 33rd birthday on the summit of Mount Kilimanjaro. In January of 2017, I joined a team of 33 cancer survivors and caregivers from Above + Beyond Cancer on a mission to Africa.

Our first stop in Africa was Nairobi, Kenya. In Nairobi we met fellow cancer patients and doctors from the Kenyatta National Hospital to learn more about the challenges of cancer treatment in Africa. The Kenyatta National Hospital (KNH) is the only public cancer hospital in Kenya. During our stay in Kenya, we exchanged stories and shared our battle scars with our new friends. After spending a couple days doing some painting and trying to spread as much love and joy as we could in the children’s ward, we visited the gynecologic cancer ward at KNH. In Kenya, cervical cancer is the most common type of cancer. We spent time visiting the women here and provided homemade supplies like blankets and toiletries. This is where I met Jane, who was undergoing cancer treatment.

I brought my guitar to Africa, and this seemed like a perfect moment to use it. I sat down next to Jane and quietly began to play my guitar for her. At first, I was nervous that I was just annoying her. Jane was obviously weary from her treatments – but I will never forget her smile as I cautiously strummed my guitar. Every now and then, Jane would reach out her hand to mine and give me a big squeeze. Between that and her smile, I knew she was encouraging me to continue playing. I was trying to think of songs she might know. Most people in Kenya speak English, and most are protestant Christians. So, I remember starting off with some religious standards – like “Jesus Loves Me,” and “Amazing Grace.” I’m sure the mini concert eventually devolved into some rock and roll songs (as it should have 🤘). At one point there was a room full of singing, smiling, clapping people – including Jane. Jane kept telling me: “This is the best day of my life.” I didn’t realize it until after, but that moment with Jane was my entire mission in Africa. I hope Jane knows it was the best day of my life too.[i]

Me and Jane at Kenyatta National Hospital

Our next mission was to fly to Tanzania to climb Africa’s highest peak – Mount Kilimanjaro. I was so unprepared for this journey and really doubted whether or I could do it. As we lugged ourselves up the mountain, I remember beginning to feel the altitude and my lack of physical training catching up with me.

“Cancer survivors don’t truly know if they can make it the summit, but they do know that the journey will transform their lives – just as cancer has transformed their lives. Some challenges come to us uninvited and undesired. Other challenges come to us because we have the courage and confidence to reach above and beyond what we think we can do.”

-Dr. Deming

At some point along a break in the hike, Rev. Richard, a 66-year-old priest with incurable prostate cancer quieted the group and told us he had something he wanted to try. It was a song – and he wanted us all to sing it together. Rev. Richard instructed the group to slowly sing the words – “Breathe in, breathe out. Breathe in, Breathe out.” As we did so, he followed along with more words: “When I breathe in, I breathe in peace – when I breathe out, I breathe out love.” You can hear this song at the end of our Journey to Africa Documentary, at about 8 minutes and 45 seconds. The song really stuck with me as I made the final steps to the top of Kilimanjaro on this day in 2017. I can’t believe we made it – all of us!

This familiar tune found its way back in my head again yesterday as I laid on the MRI scan table at Mayo Clinic. As I contemplated the additional seizures I’ve been having, I began singing Rev. Richard’s song in my head. While the MRI did the work of taking pictures of my brain, the words “Breathe in, breathe out” guided me to the end of the scan.  I felt so hopeful and positive as the scan ended. I was somewhere on a mountain in Africa, breathing. Jane was encouraging me with her smile – as wide as the sunrise over the summit of Kilimanjaro.

Feeling good for yesterday’s MRI!

Later in the day, I felt terrible for Dr. R as he proceeded to deliver me the bad news of my scan. Similar to the news we had in August, there are new areas lighting up that we need to keep an eye on. It could be cancer growing, it could be effects of the treatment, it could be years of treatments and poking around in my brain finally taking its toll. It could be the effects of surviving 2020. Either way, we need to keep a very close eye on it. Dr. R says we can start chemotherapy right away, or I can speak with a surgeon. Also, I can’t drive for six months since my last seizure – which was January 2nd. Dr. R is concerned about my mental health. We’ve known each other for two years now and are comfortable with being able to find things to laugh about in light of the situation. He says jokingly, “I feel like this is an abusive relationship.” I agree. I keep going to him for good news. Then bad news. Then good news. Then bad news.

The last few years have done a number on me. Between the effects of the treatment, the scan every month and a half or so (and the anxiety that goes with it) – I’ve had enough. I’m tired of everything being all about me. I can see how this is beginning to take a toll on the ones close to me as well, and I feel powerless. They feel powerless. They ask me what they can do and I don’t know what to tell them. Sometimes I joke about stopping all this treatment and hospital stuff – walking away from it all. I feel like I’m in a burning building and I want to jump out. I don’t’ want to jump out, but sometimes I’m more scared of the flames than I am of jumping out of the burning building. [ii]

I ask Dr. R what he would do. He says that while some of his colleagues would recommend I start treatment right away – he says that he would personally wait a month and see if this is the same waxing and waning we saw back in August, or if there is more contrast to suggest cancer growth. I don’t agree with him because I think he’s right one way or another, I agree with him because I’m tired of all of this. I don’t want to make any decisions right now. I don’t want to put my family through another major surgery. I’m not ready for chemotherapy. Camping season is coming. We’re planning to see my first ever Phish show in July!

Yesterday, while trying to encourage me (and perhaps himself) my dad put his hand on my shoulder as we walked through the atrium of Mayo Clinic, towards the parking garage. He said “We’ll get through this bud.” I thought – “Yeah, you guys will.” I know he meant the best – but I’m tired and pissed off. I don’t know where to go from here. I know my next scan is Feb 8th.

Back to Dr. Deming’s quote above – this challenge has come to me uninvited and undesired. It has transformed my life. I don’t want to give up, but today I have no courage and confidence for what the long term looks like. Today I can only muster up just enough courage to breathe in, breathe out. Today I only have the confidence to take one more step and live one more day at a time, even in this mess. Maybe that’s all I need.


[i] The best day of my life also may have been the day that I got to open for Bob Marley’s band (The Wailers) in New York City, before ditching the concert early to run down the streets of Manhattan and catch Willie Nelson’s 80th birthday party concert. It’s a tossup.

[ii] I paraphrased David Foster Wallace and then I told you about it in a footnote.

6 Comments +

  1. Still praying for you Justin! I wish Tom would of had these choices! You just keep fighting, we all are praying! And sending much love, hugs, and support ❤ 🤗 💙 💖 ♥ 💗

    Like

  2. Justin,
    My heart aches for you and your family. I am so sorry. Life is not fair some days. You can’t give up, please keep fighting. I do know that if I were in your shoes, I would consider researching what is happening with your kind of treatment at Johns Hopkins and MD Anderson. In the meantime, enjoy each day as best you can and continue to make your plans for the future. My prayers are with you!

    Deb
    Seagull Outfitters

    Like

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