Notes From the Cancer Journals

On our balcony – St. Pete’s Beach, 2014

Currently, I’m wrangling with myself about whether or not I should toss away the contents of my journals, which now span many decades. I go through this thought process periodically. The journals, along with the 821 letters I’ve written to Michael since his death, are not necessarily worth reading, at least by anyone but me. In fact, in one of the little notes I wrote him was this little gem:

Dear Michael,

I’ve been reading all my old journals. What a painful slog. Seems like I’m either embarrassed or depressed, or occasionally enlightened, bewildered or exhausted. I realize I wrote a lot in code over the years so no one could figure out what the hell I was talking about. I’m not even sure I know what I was talking about. There’s an occasional really great zinger or insight. Also a lot of drivel.
I’ve concluded that growing up takes a lot longer than I thought. I expect most people never really make it and don’t even know that.

Re-reading that note made me laugh. I’ve always been pretty good at self-criticism.

Grand Plaza Resort – St. Pete’s Beach

As I leafed through all these pages, I landed on some from the five year cancer experience Michael and I lived through before he died. Almost all of that experience remains vivid in my memory, including many of thoughts I wrote as we made our way, day by day. What I wrote still resonates with me. Maybe someone who is living that life would benefit from reading the bits and pieces of that time. I’m still here, albeit a modified version of who I was before traumatic time which began in 2012, accelerated at the end of 2013, and eventually ended in 2017. Except it never wholly ended as I will carry that experience with me forever. In any case, here are some snippets from the cancer journals.

April 8, 2014

Where to start? This Wednesday will be the day when we would have been starting chemo again. Three weeks ago Wednesday was day one of M’s 6th and final round of his first cycle of chemotherapy. That following Sunday, he had his last Neulasta shot, the stuff that supports his blood marrow so his immune system wouldn’t tank completely from the toxic treatment. He rested, had some bloodwork which showed shockingly low platelets on the 1st of April, and met with the doctor. His next scan, which will tell if this poison has accomplished anything, is set for May 2nd, a Friday, the day after our wedding anniversary, which is not as symbolic as I sometimes imagine. We meet with the doctor the following Monday, May 5th. Doomsday? More life? Who knows?
And yet, somehow on April 2nd, we boarded a plane in Indianapolis and headed south, to The Grand Plaza Resort on St. Pete’s Beach, the Gulf Coast of Florida, one of our favorite places. Today is our last day here. It’s the only day it rained, but it’s still warm enough and the gulls are calling, the waves are rolling and we sit on our 9th floor balcony together, soaking in these last moments of our trip. We have lived it like Groundhog Day, sleeping late, eating brunch, sitting in our semi-sheltered corner by the pool, alternating between chairs and a chaise lounge. The first day we rented a cabana on the beach, but decided as it was only yards from the pool, to not spend the extra money every day.
I was really scared on our travel day because Michael looked so pale and exhausted. While waiting to process our rental car paperwork, he sat in a wheelchair, looking ghostly. Had I killed him?

But each day he has improved and has real color in his face and has relaxed so much. Every afternoon, he ate a hearty bowl of clam chowder poolside, a high heme food to build up his hemoglobin, and I ordered frozen lime daiquiris while he downed a gin and tonic. We read, dozed or stared at the beautiful Gulf. Unbeknownst to us our hotel was a wedding destination and every afternoon through early evening, we watched a parade of brides, grooms and all their families and guests, march themselves down to a canopy and chairs chosen for their particular ceremonies. Clothing styles ranged from extravagantly fancy to simply casual. We speculated about which ones would last and which would end. Both of us were a bit wistful for that more innocent time when we first made the decision to make our commitment. Who knew how anything would turn out? We certainly weren’t thinking about cancer back then. Ah well…Our hotel had a beach bar called Bongo’s and every afternoon there was live music which has for the most part, added to the lazy ambience of this place. After an afternoon outside under our big umbrellas, we ambled somewhere for dinner. We had a great time at Spinners, a rotating rooftop restaurant on the floor of the hotel, expensive but with gorgeous views of the Gulf. Afterwards, we lay in our bed, watching tv and holding each other. Miraculously, managed to carefully maintain our intimacy, through all the chemo, and impossibly, shoved the disease away for this brief period. When I felt it creeping in with its incumbent grief and terror, I have used everything I’ve got to push it back. And for the most part, I’ve succeeded.


I know when we go home tomorrow, everything will rush back in and this bliss will eventually slip away. But it’s sweetness and ease make it one of the best trips we’ve ever had, as with our heightened sense of being alive, we totally soak in every moment. Maybe it is our last trip. I have no idea. But I won’t ever forget it.

April 14, 2014

I can’t count how many hours I’ve laid in bed next to Michael in the morning while he sleeps, me wide awake, his arms around me, me sweating, stretching my toes and ankles. Feeling his body, listening to his breathing. Not wanting to miss a minute of the rest of our life together.
I play Words with Friends on my phone, pay bills, check Facebook, look at the clinical trials website. I feel glad that I’m doing it, knowing that when he’s gone, I’ll remember this and it will comfort me when I’m desolate.
He doesn’t like so many of the tv shows I enjoy, so to stay in the same room in the evening, I watch my stuff on an iPad with headphones. I couldn’t do this any other way. I don’t want to squander one second.
Our personal relationship has somehow gotten more intense, despite all his treatment. We are both still hungry for each other and I marvel that it’s this way after 42 years.
I’ve been doing all the studying, giving him synopses of what I’ve learned while he stays in his body, trying to strengthen himself. But he asked me to share some of the articles and studies I’ve been reading. So I sent him one and last night, he read one of the comprehensive Merkel cell papers that I’ve been perusing for awhile. The survival numbers in it are so discouraging that I immediately could tell he’d read it. He was instantly very down, crushed by the same dark feelings I’ve struggled with constantly. I don’t think he recognized how awful it’s been for me to be knowing all this stuff. I, in turn, have been so amazed that he is able to set it aside, even for a minute, which is clearly what he’s been doing. We as always, approach things quite differently. I hope it wasn’t a mistake to send it to him.

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