We got a lot of great comments on the program book we created for the concert event back in April. Here’s a PDF of it, in case you’re interested. (You’ll need some kind of PDF viewer to see it, of course…)
Yes, that’s Debi and moi on the cover (I’m the hairy one), and I took the picture. How? Magic!
Don’t miss the photos I took of Debi in a variety of hats, loaned for the occasion by Chester’s C&G Boutique and Gallery and shot in their studio. And, of course, Debi’s photos of the Shinolas, the fabulous band that formed the nucleus of the musical portion of the evening’s entertainment…
The Program Guide for our April "Cancer Sucks, Life Rocks!" concert event
It has been nearly 3 months since my last infusion, and I happily report I am feeling normal, energetic and alive. My hair has resprouted, and once again I can flutter my eyelashes, pluck my brows into shape and shave my legs. Food tastes like food again, and I’m enjoying it immensely! I am sleeping well, taking my medicine, and enjoying my work.
I moved to William Raveis Real Estate in Old Saybrook this week, but will continue to serve my clients throughout Middlesex County. My job with the U.S. Census should start winding down in the next few weeks, and I am looking forward to having some free time for things like painting, cleaning the house and socializing.
I have been called many things in recent months… I have been called a food snob, which I will gladly claim. Whenever possible I eat fresh, organic, locally grown, minimally processed, colorful meals. In America today I guess that’s weird. I have been told I’m inspirational, and I’ll accept that. I think we all inspire each other, and that’s a good thing. But I have also been called brave, for sharing my journey with others, and that one confuses me a little.
I have faced the big C-monster, it’s true. But in my case I received a glancing blow – enough to scare me and leave behind some scars, but it appears I have escaped relatively intact, a bit lopsided but fully functional. In return I have gained insights and knowledge about how to avoid cancer in the future, and enrich my life in the process. I hope I can share some of that with the people I love so they can avoid the initial encounter. It’s always better to learn from the mistakes of others, ya know!
But, brave? Courageous? Hmmmmm… this requires some thinking. I don’t feel brave. Life is uncertain, for sure. All of us require a certain amount of courage just to get out of bed and greet a new, unpredictable day. But after facing cancer a whole lot of what used to sound scary just isn’t anymore. Maybe it’s the “eat a frog first thing in the morning” effect. (If you eat a giant frog anything else will be easy, so eat your biggest frog first.)
Snakes, mice and spiders don’t scare me. Speaking in public? No big deal. A fear of falling used to be one of my big phobias. At this point jumping out of a perfectly good airplane seems a bit silly, but even that has lost its aura of terror. None of it comes close to being my big frog.
Sharing my journey with the people who love me is not scary. You have supported and encouraged me, sent flowers, teddy bears, earrings and angels, called, sent e-emails, and been my online cheer leaders. Thanks to all of you I have never, ever felt alone.
I can’t imagine why I thought life would get less busy after our fundraising concert on April 16.
Debi and I are always wiped out for a few days after producing a show, but with an event twice as large as our usual, with a much larger band, a printed program and various other complications, “Extra Special” only begins to hint at the impact the “Cancer Sucks, Life Rocks!” show had on our daily routine.
Fortunately, it was worth the effort. The event was a modest success from a fundraising point of view, reducing some of the stress Debi’s medical bills have caused. And the outpouring of warmth and support we felt during the show packed a powerfully therapeutic emotional wallop which still has not worn off. For all of those who attended the event, helped in its production, or made a donation in lieu of attending, Debi and I thank you from the bottom of our hearts.
There are pictures, a few video clips, and more media coming soon, but they will arrive “in due time.” Right now, Debi and I have Very Important Birthdays to celebrate (we both join the Half-Century Club this week!), and several exciting projects in the works.
I’ve begun filming “Revolution of Spirit: How Cancer Fighters Face the Unknown,” an exploration of the evolution of cancer fighters’ attitudes as they (we!) face a high-stakes challenge.
I’m also working to publish an original fairy tale I wrote, which has received very positive comments at readings to date. “The Painter Prince and the Art of Seeing” explores what happens when a talentless young artist is endowed with true vision by a mysterious woman he encounters during a journey seeking inspiration.
And I’m looking forward to a possible reading of a short theatrical work of mine at the next Margreta Stage Actors’ Party on June 24. “After The Parade” observes the memories and feelings of two estranged brothers on the occasion of their fathers’ passing. *** The latest word on this is that the date may change… more news when I have it!
Those are three of the more visible activities I’ll admit to… there are many more too mundane or nascent to report on now. The New Normal seems to be just as busy as the Old Normal, but with an elevated sense of urgency. We feel blessed that at this point it is generally a happy urgency.
I’ll let Debi share her big news in her post, coming very soon…
Attendees will also enjoy the complimentary intermission refreshments including the wine tasting courtesy of Shore Discount Liquors in Deep River; the Lobster-Dandero Farm Shiitake Bruschetta by Chef Richard Bovino; Jonathan Rapp’s Herbed Soeltl Farm Deviled Eggs; Dagmar’s divine Flourless Chocolate Torte; chased by Ashlawn Farms Cowgirl Joe coffee, and — if you’ve been very good — maybe a notorious Church House Spice Cookie — if the band doesn’t eat them all first…
Consider taking advantage of the dining discounts we’ve arranged for you at four Old Saybrook restaurants a short stroll from the Kate… here’s the list.
And then there are the special offers (for ticketholders only!) at a still-growing list of shops in the area on Saturday and/or Sunday, April 17 and 18. Start by saving 15% on hats at C&G in Chester… a complete list will be available to attendees.
If you’d like to show your support but can’t attend this special event, please consider making a donation of any amount by clicking the “Donate” button.
Remember, this is happening THIS FRIDAY, APRIL 16! We sure hope to see you there!
As kids in elementary school, we learn that if we study hard and learn well, we can take a test, get a grade, and move on. In high school, we learn about grading on curves, and things start to get weird. In college, curves look simple next to all the factors which can affect our success. After graduation, we learn that everything we just learned was mere prelude to the chaos and random fate of “real” life.
Our last visit to the cancer center almost two weeks ago illustrates this point.
Having completed her last round of chemotherapy in late February, Debi underwent her usual bloodwork, and two more involved tests — one to see if any evidence of cancer could be found in her body, and the other to determine the degree of damage done to her heart by the chemo. Our oncologist led off the penultimate meeting following the tests by saying all the results looked good, and we could move on to the next phase of treatment. Just as you don’t hear much after hearing your doctor say the words “you have cancer,” you also don’t hear much after hearing “all your results look good.” Joy can sometimes make you as deaf and distracted as fear.
Having arrived at the cancer center anxious to know if Debi’s chemo had been successful, good test results were exactly what we had been hoping for. But while we were there, we also received powerful and humbling lessons in insecurity and uncertainty, as well as an unexpected illustration of the reach of faith and belief.
Mike E.'s prayer at the Western Wall in Jerusalem
Midway through our visit, we came across a good friend we had met during previous treatments. Arriving with her husband and son, we got the unpleasant news that she had learned that a key indicator of the success of her treatment for ovarian cancer had been trending in the wrong direction, and that she might need additional treatment — after having been through two rounds of treatment already. Later, we attended a special dinner with a table full of cancer fighters and their loved ones. Every patient but Debi was there with either a very advanced case, or was back for another treatment after previous treatments had not succeeded in eradicating their cancers.
Just before going into that dinner, we received a very surprising email from my Father, relaying a message containing three pictures taken at the Western Wall in Jerusalem by a long-ago teacher of mine. One of them showed a handwritten prayer: “God grant Debi …, wife of John, a complete recovery.” This was completely out of the blue, totally unexpected, and a very humbling illustration of how mysterious forces may work on our behalf without our knowledge. We spent the rest of our visit to the cancer center trying to reflect some of this light onto those around us.
Now, Debi is scheduled for a meeting with her local oncologist, and then will have her port removed, so she will finally have her body back — a bit scarred, but no longer a remediation site. Then we can truly begin the process of creating new lives on the still smoldering ashes of the old… moving forward instead of falling behind, always mindful of how easily events we cannot control can transform us again, forcing us onto paths we can only adapt to, not avoid.
Calm on the surface, but paddling like crazy underwater…
That’s what life is like for most of us, I suppose, but it feels especially crazy after a long winter of chemotherapy.
When you’ve been hunkered down all winter defending against infection, trying to keep a compromised digestive system from shutting down completely, trying to keep track of blood counts, medical bills and whatnot, the coming of spring — and the end of active treatment — is a somewhat mixed blessing: both an immense relief and an incredible challenge.
While others have been metaphorically romping in the snow, then enjoying an evening by the fire, we have been virtually frozen in the ice – unable to move our lives forward while we focused intensely on a battle for life. Meanwhile, the world has revolved half way around the sun.
But now it’s catch-up time, and our first priority is economic. Both of us are working overtime — Debi in real estate and a temporary supervisory position with the Census, while I am working to complete backed-up classwork from last semester and trying to stay current with this semester’s work, while doing freelance writing, design and media production work. But all this work can’t make up for six months of lost time and lost income.
Sounds like a good excuse for a party, doncha think? After all, we do know how to put on a party dress and shake the rafters in a big room…
Join us as we rock the Kate with the Shinolas!
So it’s time to roll out the Inevitable Medical Bill Fundraising Concert: join us on Friday, April 16 at 8pm in Old Saybrook’s beautiful Katharine Hepburn Cultural Arts Center (aka “The Kate”) for a Church House Concerts-style musical throwdown of epic proportions — our “Cancer Sucks, Life ROCKS!” celebration of life, featuring The Shinolas, Mark Erelli, Amy Fairchild, Joan Schroeder and much, much more…
Click the “Life ROCKS! Come celebrate with us!” link to learn more, and make plans to kick up your heels with us on a Friday night this spring as we get back in the swing of bringing good things to the community we love.
Debi’s fourth and final chemotherapy cycle is now onboard, and she is weathering the grayness it brings.
In passing this milestone, it is tempting to think we are done with the battle, but we’re not.
The first few weeks after diagnosis were a marathon of tests, information-gathering, planning, and barely-contained fear.
Surgery marked the start of the most active and visible part of the journey — the treatment phase, during which every action seemed to be clearly focused on destroying any vestige of cancer remaining in Debi’s body. Chemo was the “insurance policy” that offered the hope that any undetectable shards or echoes of disease which evaded surgery might be eliminated. All of this activity was easy to see the evidence of. To-do lists everywhere, a full basket of color-coded medication bottles, dishes piled up at the end of exhausting days of treatment, and a mile-high stack of projects deferred by the demands of caring first for Debi’s health.
With the end of the most active part of treatment, we move into new territory — our “New Normal.”
Less oriented around trips to doctors’ offices and medication schedules, our next chapter will be some kind of sequela of our Old Normal after being mangled by a cancer episode, and without the easy assumption that tomorrow will be pretty much the same as today. Instead of waking up to a list of Things To Do To Kick Cancer Out Of Our Lives, we will wake up to a new reality: Living With The Hope Cancer Is No Longer Part Of Daily Life.
How long will this last?
There’s no way to know.
As one doctor interviewed by Marc Silver in his excellent book “Breast Cancer Husband” said, “once you die of something else, you know you’ve been cured of breast cancer.”
To be clear, there are still a few things on the to-do list. Next month Debi will have a round of tests to see if any there are any signs of disease still left in her body. Assuming there aren’t, she will begin a five year regimen of hormone treatment to keep her risk of recurrence low. Through this period, she will undergo more periodic testing, all of which we hope will be negative.
Meanwhile, we try to put our lives back in order, like street sweepers cleaning up after the circus parade has passed through.
When we are tired, we may seek the comfort of old pleasures once more possible. When we feel a bit more ambitious, we may take on the challenge of making better parts of our lives we might previously have simply settled for.
But we will never, ever again absent-mindedly think “it can’t happen to us.”
Wendy Black-Nasta applies henna butterflies to Debi's scalp.
This round has been the best so far. Contrary to what I was told to expect, every round has gotten better and easier. I have learned a bit of what to expect from my body and am able to cut many of the symptoms off at the pass, so to speak. It’s also gotten better because I know I’m almost through with the intense part of the treatment.
One more round.. on Wednesday. I am eager to get my port removed. It has done its job, protecting my veins. But it makes my shoulder and neck ache. I don’t know how soon I can get it gone.. but after that the focus shifts to healing and prevention.
I’m also continuing to pack in quite a bit of fun. I felt good enough to get out and shovel some snow. I’m continuing to play with scarves and hats, and when it’s warm enough, a naked head. The Get Fresh Dinner Club continues to be a highlight of each month, with yummy foods and great friends. And this week an artist friend, Wendy Black-Nasta, used my head as a canvas. We experimented with henna, blue indigo, and turmeric. We’re thinking beet juice might be a good addition. If we are lucky it may look like a salad exploded on my head.
Snowy view from our kitchen window, mid-day, still early in the storm.
After a couple of amazing, energy-filled, nausea-free days this one is more what I expected for this part of this cycle. I don’t feel terrible, but there is an underlying digestive unease that I’m mostly trying to ignore, nibbling on some crystalized ginger and taking it a bit easy.
Fortunately, this lower energy day is syncing up with a nice snow storm. So I would not be out conquering the world even if I felt like Superwoman.
I am contemplating March.. being through with this winter and through with chemo. What to do with my spring? There are a lot of causes I care about, but… how to choose? And how to contribute in some meaningful way?
Meanwhile, I am doing dishes and laundry in between relaxing at the table with my computer and snacks, enjoying watching large snowflakes drift gently by my window. It is a lovely day to be indoors. It is a beautiful day to be alive!
