This is Chapter 17 of Love Song by Julienne (ft Cancer). You can click here and scroll down for the older ones.
What I am going to try to write today is the story of, up to that time and for years afterward, the very worst day in the life of Julienne and myself. It’s the day I don’t talk or think very much about. That day is why I was so reluctant for so long to write any of the Cancer Caregiver Feelings posts. Julienne and I would sometimes talk about small, snapshot portions of that day – tiny moments in the storm – but I have never really talked about it to anyone. I spent years avoiding even the thought of that day, and I am very good at avoiding thoughts. I have no idea how this will go.
In my mind, I think of that 24 hour period, from noon on Thursday the 24th to noon of Friday the 25th, as Der Tag. It is German for, simply, The Day. I think of it because I am a fan of history, as the saying goes, and Der Tag was the term used in pre-Great War Germany for the inevitable (to their minds) day to come, when they would mobilize for war against France and Russia. On Der Tag the levers would be thrown, the machinery would turn, and destruction on a level unimaginable even to the people planning it would be unleashed. For me, Der Tag is an abscess in my soul, the source of an unthinkable well of pain and sorrow that is scabbed over lightly, a never-healed scar that is avoided at all costs lest the bleeding start.
That is the scar I will try to open today. That is the well I’ve referred to a few times while I write these stories. I expect a lot of otter, or Lewis or Jules or puppies or something-else-cute, breaks as I go along. When I break emotionally, I just type [break] in the document and walk away, for hours or days or however long it takes me to come back, and when I post these stories I replace the [break] with a picture of something adorable I found during the break to lessen the blow for myself and for anyone who might need it.
I guess I could skip it, or at least portions of it, give a brief sketch like Julienne and I would both offer when telling her story. I don’t want to do that. I feel like it’s important for me to put myself back there, the center of the storm of fear and helplessness and grief. A lot died that day. Julienne and I had to mourn those deaths while contemplating a wholly uncertain future in a hospital room in the wee hours of the morning. The people that Julienne and I were before that day died. But the people we became were born that day, stronger, kinder, and better than we were. Our relationship was broken down and reassembled into a new pattern, our identities forged together into a single whole, an unbreakable alloy both flexible and strong. We needed that to weather what was to come, and the person I am now is defined by and for Julienne because of it. Without her, I’m broken, but I’m still stronger than I was before. I’ve come this far. I can go a little further.
OK. This is it. Der Tag. The Day.
Walking into Hopkins for the first time, it was clear that we were in for a completely different experience from Christiana. Everything about the place seemed to mark it as a state-of-the-art facility, from the design, colors, even the lighting. There weren’t rows of patients sitting on beds lining the halls. It was just a completely different atmosphere. Of course, that impression was just something going on in the back of my mind. In the front of my brain, I was just terrified for Julienne and trying to find her again as soon as possible, carrying the bags full of things she had wanted with her through this ordeal. I made my way through the hospital to the right section and finally found her as she was being settled in her room.
Despite her NG tube, discomfort, and fear, she was amiably chatting with the nurse assigned to us. Here, too, was the difference in the two hospitals made palpable. We liked a couple of the nurses at Christiana, but this first representative of Hopkins to the two of us, a nurse named Rachel, was in another league. She was the perfect combination of kind and hyper-competent, personal and professional, calming and confident, that made both Julienne and I feel better, less afraid, because it made us feel like we were in the right place with the right people. We were still scared, but no long paralyzingly so, because Rachel’s whole persona made us feel like, no matter how bad things were, they were going to be as OK as they could possibly be. (Rachel and Julienne remained friends after this day and stayed in contact throughout, and I am grateful to her in ways I cannot express. The work that Rachel and the other amazing nurses we met on our trip through hell is simply incredible, and the difference that they made in our lives is something that astounds me to this day. The Rachels and Allisons of the world make lives better in a way that goes far beyond medicine. I will always be grateful to them.)
We got settled into the room, arranging Julienne’s things to make her room a little homier. Our next step was to meet with our new doctor. We didn’t have to wait very long. Just like with Rachel, it quickly became clear that we were in the right place with the right people. Dr. Fang came in, carrying a sheaf of papers, and chatted for a couple of minutes before she settled down to business. And it was from her that we received the news.
It was cancer.
Fucking cancer. This 26-year-old woman who was otherwise in perfect health had cancer. Julienne squeezed my hand hard at the news. We both began crying, quietly, like I’m doing now, absorbing this information as best we could. Dr. Fang gave us space to react, to digest. Julienne and I were both grateful for her approach. She was direct without being brusque or unfeeling, gentle without being cloying or patronizing. It was what we needed in that moment.
Eventually, though, we needed to talk about what to do about it. Demonstrating once again the strength that would define her for the rest of her life, Julienne wiped away her tears after our brief time coming to terms with the news and wanted to hear what was next. Dr. Fang got to business and she clearly knew her shit. She explained that the stent approach that Christiana would have used would have failed, due to the location of Julienne’s tumor at the turn of her colon. She presented us the paper she had done on that exact subject while she was in medical school, detailing why and how it does not work.
Now, going in, Julienne was worried about two things beyond mere survival (always the first worry). One, she did not want a colostomy bag if it were at all possible. Julienne hated the idea of one and didn’t feel like she could handle having one. (A colostomy is when the colon is rerouted to the outside of the body and a bag is fitted there to collect fecal matter. It’s pooping into a bag outside of your body, basically.) Two, she didn’t want terrible scars, and the idea of being opened up completely and having her abdominal wall sliced apart was something she dreaded, as it seemed inevitable.
Then Dr. Fang explained what she was going to do, just a few hours from that moment. She was going to remove a section of Julienne’s colon and reattach the two ends surgically, rearranging her organs slightly to make it possible. If she could successfully do that, then there would be no need for a colostomy. Then Dr. Fang told us that she was going to attempt to do this arthroscopically. She calmly, and utterly without pretension, told us that there were three people in the world at that moment who could do it. She was one of them.
Dr. Fang’s calm competence and confidence was exactly what Julienne and I needed. We needed to know that we had the best doctors. We needed to know that, in the face of all of this terrible news, there were still things to hope for. We needed to know that we were in the right place with the right people, and Rachel and Dr. Fang both reassured us that we were.
Not long after that meeting, that left us feeling better despite the crushing news, it was time to prepare for surgery. I walked the hallways and underground passages at Julienne’s side as they wheeled her through the maze. I held her hand and just looked at her as much as I could. We didn’t know if she’d survive this. We didn’t know, if she did, what like was going to be like. My beautiful, kind, brilliant, loving fiancé had cancer. Cancer. And now the question was, had it spread? There is a world of difference between survivability of stages. Stage I has an 80-95% 5-year survival rate. Stage II is 55-80%. Stage III drops to 40%. And Stage IV, when it spreads to the other organs of the body, has only a 10% survival rate. That means a Stage IV colorectal cancer diagnosis carries a 90% chance the patient will be dead before five years pass.
As they began prepping her for the surgery, we met with our other surgeon, Dr. Tanner. He was the gynecological surgeon who would be removing the cysts and checking to see if the ovaries looked to be cancerous. He also helped put us at ease. He told us that he’d treat Julienne as if he were operating on his own sister, making the best decisions that he could. We desperately wanted to have children, and he assured us that he would do everything he could to save them. He did tell us, though, that the imaging on the area worried him. Necrosis (basically, dead tissue inside the body) indicated that there could be bad news on that front.
Julienne’s anxiety ratcheted up. I held her hand tightly, never letting it go, as the anesthesiologist began his preparations. I was more worried about her and the hours of surgery ahead, but she was focused on two things. The chance of a colostomy and her ovaries. I just wanted to see her again alive on the other end. As the time inched closer my fear increased. We looked at each other and said I love you over and over as her cocktail was prepared. The anesthesiologist told her to think about a warm beach and a margarita, and Julienne smiled and said OK and then she was out. I kissed her hand and watched them wheel her away from me. It was about 6 o’clock in the evening. And the wait began. It would last 8 hours.
I remember the waiting room very well, even now, even though I’ve never been back. I feel like I will always remember that room. Describing it is pointless, because it’s just a room, large, glass partitions marking out little sections, empty desks where presumably during the day people sit and give directions to the people waiting for their loved ones to get out of surgery, vending machines tucked into a little alcove, TVs droning nonsense. It’s just a waiting room, but I’ll never forget it.
Julienne’s parents were there, of course. They’d been with us as she was prepped for surgery until she was put under. Her aunt and uncle were there in the waiting room shortly after, I think, giving the support that they could. I paced – I am a world-class pacer, and if it ever became an Olympic event I would be unstoppable, a Wheaties box in my future – the room slowly, constantly, occasionally settling into a seat and sending messages to people to keep them apprised of the status. Nothing else made sense to me. Whatever was on the TV, Facebook, the internet at large – none of it made sense at all. Julienne, the only thing that mattered in my life, had cancer and was undergoing emergency surgery. The absurdity and pageantry of life was stripped away and the reality of life had no resemblance to it.
(This feeling never left me since that day. I discovered what is, to me, the truth about life and its meaning. Life is precious and short. Give all the love that you can with people who deserve it for as long as you can, because nothing but the time we have with each other is important. The rest – resumes, accolades, possessions, all the frippery and bullshit we fight and claw for every day – is a load of fuckall to distract us from the fact that we and everyone we love is going to die, sooner than we expect or want.)
Hours passed. I remember Dr. Tanner coming out to let us know that things were going well, but he’d had to remove Julienne’s left ovary as it looked to him to be cancerous. He was hoping that the right one would be OK. Again, he reiterated that he would treat Julienne and make decisions as if she were his own sister. He went back in, and I resumed my restless pacing.
Late in the night, her brother arrived. He’d cut his vacation with his family short to be there. He joined the group that I orbited in my pacing and that I periodically joined for short stretches between. We waited and waited. Dr. Tanner came back out. He sat down with us and told us that he was worried about her right ovary as well. He was going to remove it. I remember him looking at me as if I were supposed to give some kind of approval or absolution for it. I wanted Julienne alive more than anything, but I had no approval or absolution to give. He said again the line about his own sister. He walked away and left the waiting room as I sat, heart thudding as our chances for biological children disappeared, knowing how much it would absolutely destroy Julienne, and having to sit there with that knowledge for hours before she would know. I got up and walked away, resuming my trek through the waiting area.
I felt sick, like it was my fault or something. I didn’t stop him from going back in there to take away our chance at our own children. I didn’t tell him not to do it. I don’t know that I could have stopped it, but the fact is I didn’t, and I’ve felt guilt over that since the time that fucking surgeon told me he was going to do it. I remember at some point standing in front of a vending machine, just looking at it like at any minute something would drop out of it that made sense of the fucking world we were now in. Her uncle walked over to me and told me how sorry I was. I remember thanking him and smiling through tears at him. One thing is for sure, I said to him, that Julienne is going to be the best aunt that ever lived.
(Later, much later, Julienne would be reading her medical chart and discover that her right ovary had no disease in it. She tried to see if there was any portion of it that remained frozen or accessible, because then there would be a chance of recovering follicles and from there an egg. It had been treated in formaldehyde and sliced into thin pieces and none of it remained viable. In retrospect, we agreed, it would have been a lot better for us if the surgeon had treated Julienne like it was his own wife with whom he’d like to have children with some day instead of his sister. Knowing that her ovary was disease free and taken away from her hurt Julienne so much, another blow that rocked her to the core of who she was, another blow in what would end up being a never-ending series of soul-crushing cruelties in our desperate and ultimately hopeless pursuit of having children together. Nothing else about her cancer had the same level of utter devastation to Julienne as the denial of her chance to be a mother. The grief and anger inside of me regarding this one aspect of her disease and the impact it wrought on her and us is limitless and festering and always waiting for me, in the dark.)
Not long after that, in the wee hours of the morning, we were told Julienne was in recovery and doing well. I would soon be able to go back to her. I said goodbye to the family. I was told to avoid telling Julienne about her ovaries until later, to push it off until she had time to recover. Just tell her that there will be time to discuss it later.
I went back to the recovery area just as Julienne was waking from the anesthesia. The first thing she did when she woke up was run her hands down her stomach to see if she had an ostomy. To her relief, she did not. She held my hand and looked up at me with her beautiful grey-green eyes as I stood next to her elevated gurney in the dimly lit curtained alcove we were in. A whisper. Did they take my ovaries?
I was quiet, squeezed her hand. Honey….
Did they take my ovaries?
Yes. I’m sorry.
She cried, quietly, helplessly, in that little dimly lit curtained alcove, and I cried with her, holding her hand. I’m sorry, I’m sorry, I’m so sorry.
They came and pushed her back up to her room, my devastated forlorn love gripping my hand. They got Julienne back into the bed, making her cry out once in pain as they shifted her. When she was finally settled and we were alone, we held each other and grieved for the deaths of all our offspring, the ones we’d speculated about, how they’d look, how they’d act, how many of which gender we would get, the ones we’d found names for, the children we’d always wanted and would never have together, our children, the ones that we would make with each part of ourselves. They were gone, forever, and we mourned them in the early hours of Friday July 24th, 2015, in a hospital room in Johns Hopkins Hospital.
Dr. Fang came in, having gone home, run, showered, cooked meals for her kids’ lunches, and then headed back to see Julienne. She sat on the bed with us and we held each other as we all cried. That empathy from this brilliant surgeon, who’d arthroscopically operated on Julienne and did everything exactly as she said she would, was powerful. It helped heal us in a way that medicine never could. Later that day, she would bring us a drawing from one of her children, a little rabbit for Julienne. She cherished that drawing. I still have it. I will always be in debt to Dr. Fang not only for the extraordinary surgery she performed, but more for the love and understanding she brought with her.
It would soon stand out even more in sharp contrast. Rachel was no long on duty, and we had a traveling nurse instead. After Dr. Fang left, she came in to check on Julienne. She wanted to check the incision points. Got some swelling, she said brightly, looks like you’ve got a little baby in there. I watched the blood drain from Julienne’s face as she said that. I just stared this person in the face, astounded by the sheer casual stupid cruelty of her words. She left and we recovered from the shock of her words. Did she not know what had happened? Shouldn’t she have at least read about what Julienne had undergone, or learned about it? Not long after she came in and started talking about children again, and Julienne screamed at her to get out of her room. I had to explain calmly and furiously, biting words off like I wanted them to bleed, what had happened and why this was unacceptable.
Shortly after, we were apologized to by someone important and given a new nurse.
(This casual cruelty was a thing that never stopped happening to Julienne, especially on Mother’s Day. People who ask other people about children, Do you have kids? as if it’s any business of theirs, and then offer commentary like Well, they happen when you least expect them or You’ll have them someday deserve to be punched in the fucking throat. Or worse. Don’t fucking talk about children with people you don’t fucking know. Talk about the fucking weather. I had to hold my sobbing wife time after time after time because people seem to think that other people’s children is somehow their fucking business.)
Thankfully, Rachel returned in the morning. By then, I was learning the ropes of taking care of Julienne in the hospital, how to take off and put back on the leg massager things in the bed, helping her to the bathroom, anything I could do to help her. We had some visitors, including Matt and Holly from the blacksmith booth, who dropped off a whole batch of things, including a composition book and coloring books and all sorts of stuff to pass the time.
At some point, I don’t remember at what part of the morning, Julienne squeezed my hand and looked over at me. You know, you don’t have to stay with me or something along those lines began to be said. She was trying to let me know that since I didn’t sign up to marry a probable Stage IV cancer patient, that she would understand if I wanted to end our engagement and continue my life without that as part of it. It didn’t go anywhere. There was never, at any point, anywhere that I wanted to be that wasn’t by her side, whether it was in a hospital bed, a waiting room, or walking down an aisle. She was stuck with me.
During the day on Friday we were told that they would want to start chemotherapy after she recovered from surgery, in about six weeks. That would put it right after Labor Day. There, sitting next to each other as she lay in her hospital bed, Julienne and I decided that we’d rather face this next phase of her treatment together, in every way that we could. We decided right then and there to move up our wedding by a year. We had less than 6 six weeks to plan and execute an event that she’d been dreaming of and planning for most of her life. That decision lifted our spirits and cast aside the pall of our lost children, for a time. She smiled and began to glow again, like the Star in Stardust, the light and beauty within her radiating out once again.
She smiled at me and said, hand me that composition book. I have a wedding to plan.