There were good clues to this mystery in the form of scientific indicators along the way: I responded well to chemo with relatively little in the way of negative side effects; my CT-scans consistently indicated no growth of the tumor or lesions and no spread of the disease; my CA-19/9 blood marker fell dramatically from 458 into the 40s and 50s, where it remained until I got the good news on Monday that it was now 32.9. Any reading below 37 is considered “normal” or “cancer free.”
Of course this new low is subject to change and there are no guarantees in Cancerland, but as the good Doctor Sud and the wonderful oncology team that will be doing “The Happy Dance” all agree that when you piece all of these medical science facts together – these important objective clues – the picture you get of this mystery going on inside of me is one of a longer life, and a better quality life, than was originally forecast. Hurrah!
But there were also other important clues. I’ve written and joked about some of them in previous blog posts, including the continuing fact that people feel compelled to tell me “I look good.” I know I’m supposed to look bad because that’s the dominant media image of someone in my condition and it scares the hell out of most people to even consider chemotherapy because they “know” what happens, and one of those things they claim to know is that your looks deteriorate.
After six months in one of the most aggressive multiple chemo treatments known to medical science, I can tell you that is true for some of us, but not for all of us. I can tell you also – with a big fat smile on my 59-year old mug – that in my adult life as a passingly handsome man spanning some 40 years there have been precious few times when the first thing out of someone’s mouth when they met me was “Boy, you look good!” Until I entered chemo, that is. Since then I hear it regularly enough to make me smile, yes, but I should have heard in these compliments something else: another clue.
Looking good is as much a measure of your attitude as it is a comment about your body. For me, keeping a positive attitude and surrounding myself with positive people who reinforce it has been key. Why? Because it means you are learning how to “live with cancer” rather than succumb to the other available narrative: that you are dying from it. Of course we die. I accepted that a long time ago. We all die eventually and, as my dear friend Harvey (himself a doc) once put it: “We have no idea how many bullets we dodge each and every day.” So every day is a gift and a blessing. That is the first principle of living with cancer, but should also be the first principle of living, period. There is no such thing as a bad day if you are still around at the end of it. If you have a bad day, resolve to make tomorrow better!
The second part of “looking good” is taking care of yourself. Eat regularly and well. There will be times you don’t want to, and believe me, your taste buds change. But one lesson I’ve learned is that thin people don’t always do well in chemo and recovery from aggressive poisoning requires the biochemical production of new cells to replace those you are killing. That process requires food. And flushing the drugs from your system requires water. Hydration is not an option and coffee and soft drinks are no substitute for plain old water. Lauren tells new patients that at least 64 ounces a day is required and I have followed that prescription and then added some more water to it. Out here in the dessert you get used to a higher need for it, but it doesn’t matter where you live, if you are on chemo you need to drink a lot of water. One added advantage is that your skin looks better, even while undergoing poisoning.
Third on my list of clues has been the genuine sense of a caring and compassionate community that has always been there for us. I can’t say enough good things about the excellent professional care at Four Winds Cancer Clinic, but neither can I say enough good things about the people you meet and interact with in The Rooms of the Orange Chairs. We have friends there. We share stories, facts, and laughter there. We know that what drew us into this community was not something we would wish on anyone else but we recognize our good fortune in finding a place, a staff, a clientele that makes what is necessary, intrusive, sometimes tearful, sometimes scary, and always serious into – how to say this? – fun. It’s not just about The Happy Dance at the end of treatment either. It’s about making the best out of bad diagnosis; it’s about living as well as we can – bringing our real selves into the room and sharing them with each other – for as long as we can. It is about the power of shared experiences, shared stories.
So the big clues – good science, positive attitude, and caring community – all pointed toward a positive outcome from this chemo treatment. But there were other clues that at the time I didn’t recognize as clues, but in retrospect I should have.
For example, Jan Reynolds told me on more than one occasion that “miracles” happen here. Jan is a gifted caregiver and always does more than is necessary to make our stay in the clinic comfortable and conversation with her has always been easy and interesting. She is a deeply religious soul but with a decidedly light touch, so the “miracles” she mentions have a known context. And, honestly, it’s taken me a while to recognize what she means. “Miracles” have not been an ordinary part of our vocabulary despite the fact that over the past six months San and I have seen people with “death sentences” go into full remission and long-term recovery. They were miracles. And this week, being “cancer free” I became one of them.
Of course that doesn’t always happen and only God knows why. But learning to recognize it when it does occur is a big clue that gives me continued hope.
Then there’s Charlie. I’ve written about Charlie before. He owned a restaurant in Salem, Massachusetts that San, Nic and I ate in and now – himself a cancer survivor miracle – he uses his considerable talents as a chef to delight the patients and staff at Four Winds with his delectable treats.
But there’s more. Charlie and I got into a conversation about Greek food and I mentioned how much I enjoyed it. So one morning a knock comes at the front door of our house and there’s Charlie, right before Thanksgiving, with a box of pastries just for us. “We have a lot to be thankful for this year,” he said. Yes, we do, Charlie, and one of the people we are thankful for is you.
But again, it is more than that. Charlie, too, is a clue-giver, if not a clue himself. He is a positive guy who was in treatment for a long time before becoming cancer free. He maintained a positive attitude through all of it, took care of himself (with a lot of help, he says, from his very own “Charlie’s angel,” Angela, who is his wife), and let the power of our community help heal him. Charlie pays it back in food and friendship. He shows us all how rich and sweet life is, and much better it can be, even when life deals you the cancer card.
And how about Bob? Bob is the fellow – another miracle – I wrote about who came up with the “Chemosabe” theme in our community. I routinely wear a cap with Chemosabe emblazoned on it, a gift from graduate students at ASU who read my blog about it. But how surprised was I just the other day when Jan brought me a teeshirt from Bob, this one with “Rabbit … Rabbit … Rabbit” on it to celebrate a blog post I did on that saying as a piece of good luck folklore for the first day of every month?
The clue Bob reminds us of is this one: What we say, how we talk about our cancer, how we turn it into opportunities for shared laughter and hope – spells out another way we deal with our diagnoses and – each in our own way – how we learn to get control over our own stories, and ultimately to “own it.”
Communication creates realities. It “calls the world into being” as the philosopher Georges Gusdorf put it. So on the first day of every month, in addition to whatever thanks you offer for just being alive, add “Rabbit … Rabbit … Rabbit” to it, won’t you? And then act in the spirit of the good luck it brings you.
On Wednesday we arrived for the final fluids and steroids treatment and the final removal of the fanny pack. But what we really were looking forward to was The Happy Dance. Word in the waiting room was that the oncology team – including Dr. Sud – had rehearsed the dance. This was going to be a very special event!
So there I was, all hooked up to my IV pole, fluids and steroids flowing into my port, chatting with Gloria, another cancer survivor with a great attitude who remembered us from our first visit. “You look good!” she said, and then “congratulations!” Gloria had been apprised of the upcoming dance. Another clue.
Gabbee had already delivered to The Happy Dance celebration two boxes of her newest cupcake creation: French toast! She and her husband Cory also wrote a beautiful card celebrating our success. It brought tears to my eyes. This gift was yet another clue. Jobee’s daughter Jenny sent an email. Rebekah posted a lovely note on Facebook. All clues.
Lauren walked by me, checked on my IV drip, and I had to say it: “Cookies!” She smiled big time and replied, “just for you.” For readers of my blog you will recall the time she wore this same skin cream and pleased a room full of people, all of us smelling freshly baked cookies. But then she changed it and smelled like bug spray, a fact that Lauren still disputes but hey, the evidence is clear. Another clue.
Donna let slip that she had tie-dyed her teeshirt and worn blue jeans just for the dance. Hmmm … another clue. What was going on here?
By then the room was a joyous place filled with celebration and the spirit of victory. One by one the team came in, a line formed, and Gloria turned on the music. The song? “I Get By With a Little From My Friends!” the idea for which was taken from another one of my blogs.
The dance – Nic videoed it and the video is available on Facebook under my name – was properly fun and loud and crazy and otherwise indescribable. And that was just during the first verse. By the second verse in no shared key everyone in the room was singing along and each member of our team was adding their own unique steps and moves to the overall delight of all of us. It was a song that I didn’t want to end … in fact, I don’t think any one of us wanted it to end.
But it had to end. All dances do. The best ones – like this flawed and yet perfect one – will linger long in memories and be relived in conversations and stories. For a dance is a form of shared communication and intimacy, the steps we take together and the songs we sing together are artful forms of a desire for making together a common expression, and that expression is one of love, and of love’s great potential to heal.
When it was time to say our individual goodbyes and share big hugs, San and I promised this wouldn’t be the last they see of us. For we have become members in full to a very unique, very caring, compassionate, creative, professional, fun, and at just the right times a whacky community and we aren’t giving it up.
We have learned from the clues left for us from Charlie, Bob, and Gabbee (to name just three) the value of coming back to do whatever we can to help others. I can’t bake Greek pastries like Charlie, or think up creative shirts and caps like Bob, or make the gourmet cupcakes that Gabbee brings in. But what I can do is what Monica reminded me about just before we left. She told me, a little teary-eyed, that I can and should continue to write this blog and share my experiences to help others. I can come in and talk to the newbies, or to anyone, who might be having a down day. “You have such a positive attitude, and so much spirit, you have no idea the effect you’ve already had on so many people.”
It was time for me to speak. I said only this: “You have all saved my life. There is no way I can ever repay you for all you’ve done for me and for my family. ... But please know that you haven’t seen the last of me, or of us.”
Then there is this one final clue. Which is to say only this: there is you. Your very own part in The (Ongoing) Happy Dance.
You are our dear friends and colleagues, our family members and our extended family members near and far, our Facebook pals and all of those unseen and in some cases unknown others who read this blog and who offer encouragement, prayers, good wishes, poems, jokes, links, and songs. I have felt your support all along. I have been strengthened by it. Reading your comments is how I start my day, even when I am having one of what my pal Linda L. calls “necessary days,” during chemo and recovery from it.
What you say in response to my posts, what you offer that keeps me engaged, that keeps me smiling, keeps me interested in the world beyond and in the life that is still available to us out there, well, there is no way to repay any of that kindness, that love, either. But please know it matters to me. And San. And Nic. It matters a great deal.
Look, getting a cancer diagnosis can be – and unfortunately for too many people it is – a good enough reason to retreat from the world. The thought of enduring chemo for six months, even years at time is overwhelming. The pain and the side effects are real. No one can tell you with any degree of absolute confidence “what is going to happen” because every cancer is unique. So I understand how some of us choose to retreat from the world and live out what time we have left in relative solitude.
But I’m glad we choose differently. I want you to know we appreciate the big part you all have played in that choice and continue to play in the miracle of my recovery. You, too, are invited to join us in The Happy Dance each and every day. And to invent your own for those you love.