Three weeks ago I returned from a academic conference with a belly ache. I thought I had a stomach flu or at worst, the beginnings of a ulcer. I am 58 years old, a white male at the peak of a wonderful and deeply rewarding career, happily married for the past 22 years and proud of our son, who next year—if I am lucky—I will see graduate from the University of Arizona.
You see the word “lucky” in the previous paragraph? Or in the heading? If you noticed it at all it was probably in passing, just a kind of daily talisman we offer to the greater mystery of life in the hope that we will continue our story and the stories that surround us will continue as well.
Unfortunately, that is not the case for me. When I say “lucky” these days, I do so fully armed with the knowledge that my days are numbered, and while I don’t know the exact number I have left, I do know that seeing our son graduate from college is going to take a little bit of luck in addition to the aggressive treatment I am now receiving for stage four pancreatic cancer.
It wasn’t the stomach flu after all.
Yesterday was Father’s Day and our little family celebrated it with shared good feelings and a lot of talk, the loving kindness we are thankful for so evident in our son Nic, an excellent meal prepared with thoughtfulness and love by Tori with an assist from Alyssa, and, prior to all those late afternoon festivities, my first visitor—our first visitor—from someone outside the immediate family sphere.
Angela Trethewey is my boss but she is also a close friend, and it was grand to see her in her usual good spirits. I think it was also good for her to see me in more or less normal shape, still a functioning person, irreverent as ever, who is neither infirm nor that “different” from how I’ve always been. Angela’s dad had a mad dance with cancer 12 years ago and is still going strong, so I know Angela is familiar enough with the disease to not give up hope as well as to know what to tell others about her visit. That sort of “ordinary report” does important work – the work of talking about someone like me as a whole person, for better or worse, rather than as someone solely defined and tightly constrained by a disease label.
Let’s face it. Cancer is a scary word and scarier reality. While we know that most people do not believe it is contagious, the word “cancer” carries with it a symbolic weight that is hard to bear; it is easier to either deal with at a distance or not at all. That is not to say that people are cruel or shallow or even that they lack courage; merely that confronting mortality via serious illness is not one of those easy conversations people routinely engage in. So, because we have so little practice at it, we lack the essential experience and conversational tool kit for it. And that is why it becomes easier to move as far away from that conversation, from that person with cancer, as we can. We just don’t feel up to it. And, even if we did feel up to it, we seldom know what to say.
We define them as a disease. In so doing, we close off opportunities. We lose their stories. And they lose ours.
Yesterday was a good long day at the chemo ranch with some morning blood work that allowed seven hours in the comfy recliner chair while my system received three different poisons, dextrose, Zofran, and a bunch of other secret ingredients designed to massively assault the bad guys in a way that also lessens the likelihood of negative side effects, and then, for the next two nights and three days, live and sleep with a fanny pack containing an electronic pump that keeps the chemo flowing through plastic tubes that run from my waist into the port cut into my chest and then into my blood system.
If you think that was a long sentence, imagine living it.
I tell you, brothers and sisters, you cannot do this end-of-life journey through Cancerland well without a lot of love and support from your family and friends, the kind of love that endures without complaint, that helps you manage the pain and the changes and the nausea and the boring in-betweens, that keeps the fun stuff fun if not funner, and that holds on to you—the you that you were before all this shit—in their eyes, their smiles, their talk, and their hearts.
Nor can you do it and not lose your way to the bottomless grip to the grief and self-pity without an oncologist you trust with your life – our Dr. Rohit Sud - and without a caring, compassionate and incredibly knowledgeable staff working in a place that feels right: Monica, Tia, Jan, Gerry, Ashley, Sandy, Donna, Lauren, and Terry of the Four Winds Cancer Clinic.
In all of these parts of living as well as I can while dying of cancer, I have been greatly blessed. But if you have been reading my blog regularly, you know that. I just cannot stop saying it
It’s all part of the Chemosabe life. If you want to know what that means, keep reading.
Yesterday I completed another long day in the chemo chair, emerged from it tired but happy (you are always happy when a session is over and there are congratulatory hugs shared all around). Slept well but dreamt – for some reason – of next season’s “Sons of Anarchy” episodes. It will be interesting to see if my dream pans out. If it does, then one un-anticipated side effects of chemo is prescience and maybe I can channel that skill into a lottery win. J
In my continuing work here, trying to write about my/our journey through Cancerland, I feel a need to “go deeper” into my experiences (San is keeping her own journal), at least deeper than the opening paragraph, which, without the bit about SOA and a lottery win, is the kind of illness gloss that is true but isn’t very helpful in showing you “what it is like to” live with cancer. So in the spirit of doing that, what follows is a chronicle of yesterday’s chemo treatment and today’s reflection on it. It is a longer piece but I hope you find it helpful.
The good news is that I feel great! Having completed Round Four I am now – we all are now – 1/3 of the way through the chemo treatment program and according to the good Dr. Rohit Sud, he is “very pleased” with my progress. Hurrah!
My oncology nurses – the good angels Monica and Gerry – are also pleased with my progress. As Monica put it: “That you are tolerating this aggressive treatment so well is amazing.” To which Gerry added: “We have to find a new way to describe you, you are more than our rock star!”
With care providers like these, I have a big smile on my face to accent the "steriod tan," and hope in my heart.