This week was a tough one friends. In short, I have been dealing with an allergic reaction to something. For two weeks in a row I have had this horrible, red, itchy rash that has been coming and going and making me insane. In order to narrow down what is causing it my oncologist started by eliminating some of the drugs I was using to counteract the side effects of the chemo. If that doesn’t work we’ll have to assume it’s the chemo itself but my fingers are still crossed it won’t come to that. I wanted to write about this experience not to complain about it, but because dealing with all of this has turned into a surprisingly positive and important experience for me and I wanted to share it with all of you.
For starters though we can all agree that feeling itchy is the worst…right? Even having one mosquito bite can make you a little crazy. Feeling an excruciating itchiness that covers every inch of your body, I discovered, is unbearable. I had a little bit of a rash before I went in for chemo on Friday but after loading my body up on poisons it started screaming out. My skin turned bright red in small splotches covering my back, stomach, chest, neck, arms, legs and feet. The itchiness that radiated from every part of my body was like nothing I have ever felt. At some point it got so bad that I went into a complete panic. I curled up on my knees on the ground sobbing and clutched my head as the only part of my body that wasn’t itching.
The minutes and hours that followed were a battle against this agitation. I took painkillers and Benadryl, lathered myself in prescription steroid creams and covered myself in ice packs. The latter turned out to be the most effective of all of the “treatment options.” My sleep Friday night was more like several short naps in between switching out ice packs. I had two strapped to my back, one strapped to my chest and one strapped to the bottoms of my feet where the itching was, infuriatingly, the worst. Saturday was a fog of Benadryl. I sat in the same spot all day and watched numbly as the rash eventually began to fade.
Sunday morning I woke up and the rash was totally gone. I had other symptoms from my chemo but I hardly cared about those. I was going to shake off the Benadryl fog and embrace the world! I was so ready and excited to be a “normal” person and have a “normal” day. My first adventure was to run some errands. It was such a simple thing but it felt so fulfilling to leave the house. About halfway through my trip, however, I realized that I had taken on too much. My body was too tired to carry the bags I had filled up. My feet tingled and ached from neuropathy and scolded me for walking on them. I caught strangers staring at me and remembered that I could not so easily slip unseen into the land of “normal.”
It was deflating. I’d gone from excruciating pain, to depressing numbness to a failed attempt at normalcy. I came home telling Andrew that I just didn’t feel like a human being anymore. I was the itch, the illness, the drugs, the head wrap, the chemo, the cancer… but not a human. I felt broken and lost. I didn’t know who cancer was turning me into anymore.
And then an awesome thing happened! My girlfriends came to visit me with food and talking with them like I always had, for even just a few minutes, was a breath of fresh air. Then I went to my Young Adult Cancer Support Group where we shared our collective fears and worries and aspirations. Then I went to visit a friend who I haven’t seen in ages and we talked deeply about death and fear and life and living. By the end of the day I felt like a human again. I felt alive and energetic and dynamic. I was engaging in my life in deeper terms than how many painkillers I needed to cope and it was thrilling.
Somewhere in all of this, in getting broken and being rebuilt, I ended up feeling very raw and vulnerable, like I didn’t have any of the answers but was open to all of them. It was in that mindset that I ended up watching an interview with the poet and philosopher Mark Nepo. He had survived cancer in his 30s and described it as a real spiritual awakening. He had felt broken, as I had, in a moment when the side effects of chemo had brought him to his knees, as mine literally had. The experience had changed his view of life and the direction his was going. Specifically he said that cancer had taught him to “follow the aliveness.” If you want to sing, he said, you don’t need to be a singer, you just sing. If you want to write poetry, you don’t have to be a poet, you just write. You do the things that make you feel most alive. This idea of “aliveness” really resonated with me, perhaps because I had just clawed my way back to the land of the living and feeling alive was a rather relevant concept.
I have continued to think about the idea of aliveness and how it relates to my own cancer journey over the last few days. I have really come to love the concept for several reasons. First, you often hear sentiments along the lines of: do what makes you happy, follow your bliss… that kind of thing. I think aliveness is related but it’s much bigger. Aliveness can certainly come from joy and happiness but sometimes we feel most alive in a moment of fear or grief or despair. Aliveness is about feeling the rush of what it means to be human, to be a part of humanity, to experience your five senses, to see your connection to everything else that’s also alive. Aliveness can also come from unexpected places. You can seek out experiences that make you feel alive but you can also get stuck in the emergency room and end up laughing for 30 minutes straight as your husband performs a one man show reenacting your wedding day to keep you entertained while you wait for your CT scan (the later may or may not have happened to me very recently). Following the aliveness is also not about seeking and striving. You are not doing what makes you happy, you are following and finding what makes you happy. This takes the effort and the judgement out and allows for the unexpected aliveness to find us wherever we are. And finally, I realized that aliveness is really all there is to life. Life is nothing more than a series of moments in which we feel alive.
This concept made me realize that I have been thinking about my cancer journey all wrong. I have been contemplating cancer as a time in my life. 20 crappy weeks of chemo. However many painful months of surgery and radiation. Several fearful years of remission. This is a hard time, a sad time, and cancer is robbing me of my life. This is what I’ve been thinking but I realized that this simply isn’t true. If life is in these moments of feeling alive then cancer hasn’t changed my life. I get to have those moments whether or not I have cancer. The next day, week, month is just another opportunity for more moments of aliveness, more spaces for joy. Cancer can’t take that away. It might create more suffering but it was from the brokeness that the aliveness became so clear. In this way the suffering has been a gift.
The one thing that I would add to “Follow the aliveness” is “Recognize the aliveness.” Call the aliveness out by name. As Kurt Vonnegut says: “I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'” I would say to please notice when you feel alive. I have been trying to give special attention to my moments of aliveness lately. I can think of many things that I have been drawn to in my life for the feeling of aliveness they offer: hiking, riding my bike down hills, eating really good food, having passionate conversations about issues I care about, photography, giving gifts, writing this blog! But when I look out for them I have also noticed moments of aliveness in many small and unexpected places. I noticed when I ate a piece of dark chocolate yesterday, for example, that it was a surprisingly joy-filled moment for me. On the one hand, obviously, it’s chocolate! But on the other hand how many pieces of chocolate have I mindlessly eaten to fulfill a craving without acknowledging the joy in the moment? (The answer is: too many).
The feeling of brokeness has offered me something else as well. It has changed how I feel about my cancer, how I feel about the actual tumor inside of me. I feel like, for the first time, I can accept the cancer cells inside my body. They are really just a broken part of me and I forgive them for that. I feel empathy towards them. I had a moment the other day when I shed a few tears for the cancer cells in my body. I know what it’s like to feel broken so I feel like I understand them somehow. It doesn’t mean that I am not afraid of them, that I don’t want them to go away, that I don’t wish with all of my might that the chemo will shrink them into oblivion. But it’s ok. I can wish something wasn’t and still accept that it is.
So, that’s where I am today friends. I feel broken but grounded, joyful but calm and a little lost but very much alive. I am hoping that I can continue to carry the wisdom I’ve gathered in the last few days with me along this journey. It’s certainly already made the load a whole lot easier to bear.