A New Tune

Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.
Emily Dickinson

With only five sessions of radiation therapy left to go, I had to take a break this past week. This was a painful decision, as I really want this part of my treatment to be over. However, that pain was easily trumped by the burning pain in my esophagus, which the doctors had warned me was going to be an unavoidable consequence of radiation.

The time off allowed me to soothe the area with various concoctions made up by the pharmacy for just these side effects. It also gave me time to think about this phase of my treatment and I came to the stunning realization that I'm anxious about ending the treatments. Before you think, "My God they've radiated his brain too," I'll explain. This past week I realized I have become attached to the hope that the radiation will kill off any stray cancer cells that might have escaped the surgeon's blade. As long as I keep going, I can stay in "It's going to work" mode. When it's over, I shift into the unsteady "I hope it worked" mode. This type of mental transition is not always easy for me, which is why I find mindfulness training to stay in the present moment so important and necessary.

This got me thinking about hope and its role in the life of anyone facing a serious health crisis. Over the past several months, I have found hope to be a fickle companion. At times, it stands sturdy with Obama-like audacity, while at other times, it seems to be as fragile as a soap bubble, bursting at a mere breath. On one level, hope is a deal that the mind makes with itself. The agreement is something along the lines of "I'll keep thinking things will turn out ok so that I won't think about the things that will happen if they don't." I term this "surface hope" and the cause of mental gymnastics as the mind tries to contort itself to accommodate reality. This goes something like "Ok, I was hoping it wouldn't be cancer but now I hope that it won't require surgery but if it does, I'll hope that the surgery takes care of it and I won't have to go through chemotherapy but if that happens then . . . "

On a much deeper level hope is, as the French proverb says, "the dream of a soul awake." This hope is the thread that weaves its way through life's ups and down, victories and defeats, and triumphs and tragedies creating the safety net one falls into when reasoning fails and the mind is at a loss for words. This hope has a different look to it and I often see it on the faces of the people I sit with in the chemo room, radiation waiting room, oncologist's office and, strangely enough, every once in awhile, in the express checkout lane at the grocery store.

Contrary to the dreamy, "I hope I win the lottery" expression, this deeper hope is marked by a look that mirrors the real world where pain and pleasure, suffering and joy, and health and illness trade places with alarming regularity. The expression says, "I know that I don't know what's coming next, just bring it on." Daily, I sit with these folks who are heroes, not because of their fight against cancer, but because of their courage in facing the inner demons that all crises stir up. Whenever I find myself struggling to hear the tune of "the thing with feathers," I think of them and I find my hope for better days returning.

Battle Fatigue

Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.
Kurt Vonnegut


Prior to starting chemotherapy and radiation, my doctor described the fatigue that accompanies these treatments as "the feeling you have after you've been at the beach all day, times ten." I experienced this phenomenon this past week and there was very little in it that I would consider beachy. What I experienced was exhaustion on a cellular level. It was as if every bodily process had just completed a triathlon and now lay sprawled on the ground gasping for air.

I was caught off guard by this latest side effect, which is so common it even has the initials CRF, for Cancer-Related Fatigue. (Although I think Can't Really Function is more appropriate.) My first two weeks of treatment were marked by an almost hyperkinetic energy, fueled no doubt by anxiety and the steroids I was receiving every two days. I was able to carry on all my usual activities, including working, without as much as a yawn. "This is going to be much easier than I had imagined," my overly active mind assured me. By the end of my first series, my doctor even joked with my wife, Kathy, that I was looking too good and he was going to have to increase my dose. (If he wasn't joking, I planned to find a new doctor, post haste.)

Then the wheels fell off the energy bus, to be followed quickly by the transmission and engine. Not only was reporting to work no longer an option, as supervisors tend to frown on frequent power naps, but minor activities became a test of endurance. Imagine becoming winded after vacuuming, light headed after walking the dogs, and in need of oxygen after grocery shopping. (That last bit was for dramatic effect; I didn't really need oxygen, but let's just say it's a good thing I had a cart to lean on.)

According to Chemocare.com the exact causes of CRF are unknown. Although, in my case, I'm told it's partly the result of the reduction of red blood cells and my body having to restore the healthy cells that are being destroyed by radiation. The website lists the warning signs of CRF as: tired eyes, tired legs, whole-body tiredness, stiff shoulders, decreased energy or a lack of energy, inability to concentrate, weakness or malaise, boredom or lack of motivation, sleepiness, increased irritability, nervousness, anxiety or impatience. While it's fair to say that at least half of the above menu described me even before my diagnosis, the difference is the shear weight of them all happening at once, minus the ability to recharge one's battery.

The psychological impact of CRF is just as profound. It's hard to imagine that you're getting better when your body feels like a rapidly deflating balloon. It's much easier for the mind to spin anxious tales of health-related horrors, converting each bump and bruise into a new tumor. The saving grace is that CRF eventually exhausts the mind. This means that thought processes that once flowed with Class 5 whitewater momentum, slow to a trickle. This creates gaps in thinking that are normally experienced only by advanced yogis tucked away in a mountainside, eating rice one grain at a time. These gaps are highly prized in the mindfulness world as they are seen as the dwelling place of true peace. In my case, they offer wonderful opportunities for meditation practice without the constant interruption of what Buddhists call the "monkey mind." The extra payoff is that meditation helps restore one's energy and reconnects one to the life that lies beneath all health related concerns.

Following the advice of Chemocare.com, I have learned to conserve the energy that I have, rest when I need to, give my body the nutrients it needs, and limit my stress. Following the wisdom of the ages, I routinely throw in a "This too shall pass," prayer for good measure.

Writer's Block

Writer's block is a fancy term made up by whiners so they can have an excuse to drink alcohol.
Steve Martin

Since starting this blog, it's been relatively easy to pick out a theme to sum up the week's events. I have even developed a list of rules to help keep the entry from becoming one long rant about the evils of cancer treatment. They are:
1. Inject humor whenever possible.
2. Limit the time on the soapbox.
3. Always look for a connection to the practice of mindfulness.
4. Stay off the pity pot.
5. Avoid split infinitives (My spell checker keeps telling me to really work on this grammar rule.)
6. Avoid becoming emotionally attached to what I write. At least until after the last edit.
7. No listening to music while I write. This only leads to writing that is so emotionally toxic that only someone with a therapist's license, or wearing a HAZMAT suit, should wade through.
8. Always end on an upbeat note or, in the absence of a positive frame of mind, a Zen koan (the unanswerable questions given to Zen students to drive them out of their heads).

These rules have served me well, until this past week when I restarted chemo and had a major reaction to one of the drugs. No matter how hard I tried, no matter how many drafts I prepared in my head, I could not fit the shakes, the chills, the fever, the rash and beet-red face into this frame. Even catchy titles such as You Can Beet This, Rash Decisions, and For God's Sake Will Someone Turn the Heat Off, couldn't contain my runaway thoughts about the week that was.

It occurred to me that I could always skip an entry for the week. I could just let things settle down, gather my wits and await the return of a gentler muse. Perhaps it would even be therapeutic in a "let go of the past" sort of way. Or, maybe it never really happened. Who's to say? So much of this seems like a dream anyway.

Then on Friday, leaving the oncologist's office, less red but still shaken, I ended up on the elevator with a young woman who was also leaving the office. She looked at my pinkish new scalp and asked, "Are you through?" "About halfway," I responded. She then touched her full head of hair saying, "I'm done and this is the first growth." She added, “I gained 40 pounds from the steroids.” As the doors opened on the ground floor she said, "I have my first CT scan since finishing and I'm scared it's coming back." "I know," was the only thing I could think of to say. As we headed outside into the beautiful day, me going to radiation therapy, her to whatever her future holds, I quipped, "I can think of a million things I'd rather be doing." "Make it ten million," she responded with a faint smile and walked away.

I sat in my truck and a decided that she would be my focus as this week ended. I shook off my "I gots the red skin blues" and offered her a prayer of loving-kindness:

May you be free from fear. May you be free from suffering.
May you be happy. May you be filled with loving-kindness.
May all people everywhere be happy and filled with loving-kindness.

“Oh yeah,” I whispered, “I'll have some of that too.”

Dragon Slayer?

Perhaps all the dragons in our lives
are princesses who are only waiting

to see us act, just once,

with beauty and courage.

Rainer Maria Rilke

Anyone facing a serious illness knows all too well the roller coaster rides that are moments of profound courage and absolute fear. If they are like me, they have most likely noticed that acts of courage seem to be an uphill climb with the full weight of gravity pressing against one's chest. Moments of fear, on the other hand, seem like a free fall with ever-increasing speed that are best encountered with eyes closed.

The transformation from feeling like a well-rooted tree to shaking like a leaf comes so quickly at times that one has to wonder who it is that resides at the core of the soul, hero or coward. In my case, it often feels like the very attempt to keep a stiff upper lip makes my whole body tremble. It's as if the effort to resist fear and weakness drains me of the energy I need at the time. What a trap. How to slay today's dragon after, in the words of Monty Python, "soiling my armor"?

This past week's monster was in the form of the chemo beast that was feeding on my hair follicles. The shock I felt with each handful of hair was not just the "What am I going to look like bald?" question (although, believe me, that was the primary concern) but the stunning reminder of how potent the chemical mix in my body is and what it's doing on a cellular level. Here was a not so subtle reminder of why the word cancer can cause even the bravest of souls to quiver; its very treatment is hazardous and, let's face it, toxic. Searching for the Holy Grail of recovery in the face of such a nemesis would seem to require King Arthur-like resolve with a touch of a Bruce Willis "Yippee ki yay," attitude (Never my forte).

What I found, however, was that the ability to face this, and all of my recovery related crises, came not from steeling myself for the attack but in the act of surrender. Not surrender in the white flag, I lose, sense, but the deeper surrender that comes from no longer fighting what is. Saying "yes" to the present moment is the cornerstone of mindfulness practice and the source of great strength. It is quite simply, fear minus the resistance; the courage to stay right where you are and not seek shelter in the past or future.

The Vietnamese Zen Buddhist monk Thich Nhat Hanh teaches, "There is no escaping the things we hate, we can only transform them into the things we love." We do this by turning the light of our awareness on the things that scare us the most. This means that we don't have to slay our dragons, which in the end is only a struggle with the self. By staying with the present moment, in a nonjudgmental frame of mind, we find, as the German writer Rilke suggested, that "Everything that frightens us, is in its deepest essence, something helpless that wants our love."

So it was that I walked head long (pun intended) into my local hair salon and told the woman who normally cuts my hair what adventure awaited us today. As she held the Excalibur of all shears in hand she asked, "How much are we taking off?" "All of it," I managed to choke out. And that's the last I remember before passing out. Just kidding, I was conscious throughout, but strangely detached. As she spun the chair around to the mirror, so that I was now looking directly at the new me, I had to admit I felt somewhat proud of what I had accomplished. Now there would be no more mornings cleaning out the shower drain, no more having to sweep the bathroom floor after every combing, and no more anxious moments spent wondering how long before anyone noticed the man with the incredible thinning hair.

I walked out of that salon feeling triumphant, buoyed no doubt by one hair stylist's comments that she "loved the look" (Yeah, I still got it). I wish you could have seen the moment, shaven head held high, sunglasses on, cool breeze blowing across a freshly mown scalp. It was a thing of beauty.