Blessing

This one goes out to my girls Laura, A’lishya and Jenn…Don’t nobody love me the way that you do.

A few nights ago, I was awoken around three or four by what felt like a sharp cramp in my chest and belly. Earlier in the night, after feeling a bit of discomfort in my abdomen, I had taken two oxycodone before heading to bed. Oxycodone is a fairly potent pain killer. But what I learned upon being so abruptly awoken is that often times, drugs like this come with more nasty side effects than benefits. It felt as though the lining in my stomach and intestines had been sandpapered down. I crawled into James and Erin’s room and woke them up for assistance. They snapped to attention militarily, Erin springing from her bed, still half asleep, yelling “I’m on it!” Before “it” had been fully understood, I was being led back into my bedroom by James. Erin descended on my bed with tea tree oil for my forehead, lavender for my pillow, and gentle massages for my arms. The truth is, in times like this, there’s very little that can be done. Erin’s often mentioned to me that the most difficult part of this whole ordeal has been the moments when I’m in extreme pain and there’s little she can do to take it away. So the goal is not to make the pain go away, but to work through it, to breath through it and even, if possible, relax into it. James held my hand, closed his eyes, and began breathing deeply. It’s a difficult challenge to help me breath deeply when I’m in pain; it brings up a considerable amount of emotion. There were many places I could go emotionally, but I needed their guidance to keep me calm. I’ve learned over seven months of chemo that in times like this—in fact, pretty much in general—the most important thing I can do is keep my body in a calm, relaxed state. James brought our speakers and laptop into the room and turned on Led Zeppelin. Erin held my body as it shuddered and writhed, and slowly began to settle back into repose. Thirty minutes later, I was calm, drifting peacefully to the sounds of “Stairway to Heaven.”

As I fell asleep, my mind drifted to earlier in the day when I had taken Traxx up to the Hunstman Center to pick up a prescription. I was so proud of my newfound independence; it’s been a while since I ‘took myself out.’ I’d stopped in the computer room to print off an essay for a fellowship I’m applying to, and noticed a middle-aged woman sitting a few seats down from me. We were the only two in the room. She chatted idly on her phone with a friend about this and that. “I was born in Kearns,” she bubbled, “and I’ve stayed here m’ whole life.” Usually a statement like this gives me the shivers. This woman seemed to me the prime example of how outside I feel sometimes in Utah, with my Mohawk and my love of quinoa. The woman was explaining to her friend how a loved one was going in for surgery that afternoon. The challenge was to find a Mormon priesthood holder to give the patient an anointed blessing before surgery. The procedure, fairly familiar to me from my church-going days, can be complicated to orchestrate. She had to find the right people, coordinate their work schedules for the afternoon. And then there was the question of where one might find a vial of consecrated olive oil at last minute’s notice. Dilemmas. We felt a world away, though only separated by a few chairs. In my corner, I sat with my i-pod and my 25-year old smugness, and rolled my eyes at the conversation I was forced to listen to by nature of this woman’s loud voice. How very Utah, I thought. Round up the church members and give the invalid a blessing! Perhaps prepare a casserole while you’re at it.

Fast forward ten hours later, and I am shaking from pain that radiates up and down my body. I have James on one side, holding his hand over my chest, his eyes closed. He is almost praying, he seems so intensely lost in thought. On the other side is Erin, calming me with her voice. In the background, Robert Plant gently sings “laughter…remember laughter?”

For a brief second I saw this woman from earlier in the day again, but with a refocused clarity I had not experienced before. I saw her in me, and me in her. Her voice became my voice, her suffering my own. We’re not as different as I thought. We both believe in something larger, deeper than ourselves. We have to. Ultimately, in a moment of crisis, it is what helps us let go and surrender. We just have different ways of expressing it. As I fell asleep that night, enjoying the profound peace that comes after pain, I let go of my 25-year old brashness—I seem to be doing that a lot—and let myself marinate in love.

The Mask

It was just starting to kick in. I’d been feeling a euphoric vibe all throughout the treatment. I guess it was because this is my last treatment of methotrexate. The last one. Methotrexate may only have deep significance to me, but it is deep nonetheless. I’ve had to form a ‘marriage of convenience’ with this beast as it has taken over my body and demanded that I accept it. But now, on day four, the nausea—the unbearable nausea—started kicking in. I threw in the towel. Any projects I’d been working on, any enjoyment I’d been having, all were scrapped and my efforts were refocused on the nausea. It’s pretty hard to ignore. I laid down on the bed, resigning myself to an afternoon with the boob tube (my mother’s phrasing) and a packet of peanuts I’d been slowly nibbling on all day, the only things I could stomach. Conra came in my door. Conra has the sweet charm of a cookie-grandma, mixed with the efficiency of your favorite elementary school teacher. She’d popped in to be sure that my central line (the one sticking out of my chest) hadn’t been switched to a port. “No, it hasn’t,” I assured her. “Still looks like I have dreadlocks from the matrix.”

On her way out the door, Conra paused and glanced over at the small mask I always bring with me. She commented that she thought it was a beautiful mask, and I was shocked that I hadn’t told her the story behind it. Come to think of it, I’m shocked that I haven’t told you either. So there was this guy in Rwanda in the small town where we lived, Butare. He was Congolese and made money by collecting masks from the Democratic Republic of the Congo and smuggling them over into Rwanda, where he could make a fine profit and get some income back into the suffering Congolese communities. I knew I wanted a mask, I just needed to assess my funds at the end of the trip. But then one afternoon, as he was showing me his latest collection of masks, my eye caught sight of a beautiful image. The mask was a deep brown rusted color, with small slits for eyes and a smiley face. Immediately, I knew it was the mask I wanted. I asked my friend to tell me more about it. He was always eager to share, as he was passionate about the preservation of the Congolese cultures. He explained to me that the mask was from a region in the Congo called Ituri. It was mostly forests, dense rain forests, with many refugees from Uganda and Rwanda. It is in this region that the now infamous war has been raging on for years, with little sign of ending. My friend told me that this was a healing mask, used in rituals when a person is sick. He put the mask on and started dancing slowly around our front lawn. “Now like that, you see?” I told him to consider it sold.

I carried that mask with me from then on. I travel lightly, a single backpack suiting my needs perfectly. There were no frivolous objects. Each carried significance, and the mask was no exception. Every time I looked at it, I thought about the two days I spent on a hill in Rwanda with a group of deaf children and watched them make theatre. I was slowly understanding that the theatre was just a means to a much more rewarding end.

By the time my travel adventure was coming to a close, I had discovered a new element about the mask. Its smile was not naïve. It didn’t reveal youth, but rather age. The distinct recognition of sorrow was shadowed by the bright smile. There were calloused wrinkles streaking the brown. And yet, the look on the mask was deeply satisfied, joyous and happy, as if to say that it had a secret, the great secret, and wanted to share it with you..

I saw Conra coil ever so slightly at the door. Subtle. We are in a cancer hospital after all, right? But she turns around as she’s leaving and she says, “you know, if I were a slightly braver person, I’d touch that mask.”

A Distinct Possibility

While I was enjoying last week’s stay at “Chez Hunstman” (kind of makes it sound like a weekend at the spa, n’est-ce pas?) one of my nurses came into my room to show me a few charts. The first indicated how my methotrexate levels were decreasing exponentially, as per usual. The second, a piece of paper I’m quite familiar with at this point, was my chemo protocol, literally a piece of paper that charts in detail my journey through every round of chemotherapy. It looks like a large tree, with several distinct branches or columns indicating possible routes I could be taking. She pointed to a column on the left side of the paper and indicated that I was doing well, moving right along in my protocol. My jaw dropped. My heart skipped. I shook my head and told her, rather firmly, that she was mistaken. My protocol was not, as she had indicated, on the left side of the paper. Rather, my protocol was the column on the right side of the paper. Let me explain the difference, so you can understand my shock a little better. The protocol that I’ve been following ever since I was diagnosed calls for six rounds of intense chemotherapy, each lasting approximately 56 days, before we reach the point known as ‘maintenance’ where the chemo is reduced drastically. The protocol the nurse pointed to on the left side of the paper called for only four rounds of intense chemotherapy prior to starting maintenance. The difference, while subtle, is profound to someone in my situation. It’s the difference between two intense rounds of chemotherapy. Keep in mind that over the last six months, I’ve completed two and a half, which means that the difference in the two protocols is quite literally up to five or six months of intense chemotherapy. Does the jaw drop make a little more sense now? This is not the kind of thing chemo boy takes very lightly. I told her to please, for my sake, go back out to the group of doctors making their rounds and correct the mistake.

Almost an hour later, the same nurse was back in my hospital room to clarify. Her news came as a shock. She informed me that my primary oncologist was considering at this point whether or not to switch my protocol from six intense rounds to four intense rounds. She apologized for her faux pas (I really should have been hearing the news from my oncologist) but said that it was promising, considering how well my body has been reacting to chemo throughout this process.

So I went to my usual appointment on Tuesday with my oncologist, still shaken up and anxious to hear from her mouth whether there was any truth to this rumor. She informed me that when I had originally been admitted to the hospital, the doctors had been very concerned that the cancer had already reached my central nervous system (CNS). I came in with kidney bean-sized lumps covering my scalp, as well as numbness around my mouth, both indicators that my CNS had been affected. However, they have never, in all the bone marrow biopsies and lumbar punctures that have been performed since that time, found any trace that my CNS has been affected. No sign of cancerous cells. I was originally put on a rather grueling chemo regime because of this initial fear that my CNS had been affected by the cancer. Unable to find any hard evidence that would support this, I was told on Tuesday that there is a very distinct possibility that I will be shifted to a different, less grueling protocol. When I pressed for a conclusive answer, my oncologist shrugged her shoulders. I’ve come to recognize this look and accept it as the inevitable answer for everything in chemo. “We don’t know yet. We need more time.”

It’s a small change, but profound for me. It would mean only one more round of intense chemo before starting maintenance. Potentially, it cuts off up to six months (and all kinds of unknown adventures like pancreatitis). And so, once again, I find myself living in limbo. I don’t know. I probably won’t know for another few weeks. And I sort of just have to live with that. I’ve braced myself from the beginning for as many as nine more months of intense chemo. I’m prepared for that. It’s daunting to imagine that it could be over much sooner. Regardless, I have to admit that it’s an incredibly flattering compliment. The fact that they are even considering this change in protocol acknowledges that my body (and mind and soul) have been performing amazingly, and responding very well thus far. So I wait, try to think positive thoughts, and prepare myself for every possible scenario. I’d fight it, but I’ve realized the only way to get through this rollercoaster with any small amount of enjoyment is to throw my hands up, close my eyes, and try to enjoy the ride, however it looks.