I don’t know if there’s breathing or not
Butterflied arms, tell me that this one has flown
Blood seems black against the skin on your porcelain back
A still life is the last I will see of you, my painting of a panic attack
You died in my sleep last night…
You died in your sleep last night…
Frightened Rabbit, “Death Dream”
The examination rooms at the Cleveland Clinic are stark white. Clinical and Impersonal. If your doctor’s office is high enough in the tower your view can extend all the way to Lake Erie. I’ve sat in these rooms on multiple occasions now. Staring at the blank walls, the blank sink, and the blank examination table. I pass the time by playing games on my tablet with my husband. Between turns, I open up my “notes” app to make sure that all of my questions are written down so that I don’t forget to ask them later. My leg jitters up and down, tapping the floor. I bite my nails. Every now and then I get up and walk over to the window and stare out. Or maybe I squirt some sanitizer gel on my hands and nervously rub them together.
In this room or one like it, I’ve made plans for surgery. In this room or one like it, I’ve gotten bad news. Today, I am here to find out the results of scans with hopes that I might qualify for surgery. My husband says that he hates the Clinic. He hates the whole city of Cleveland. It was here that I had my surgery-not-surgery, – nearly one year ago today.
The path over the sky-way from our hotel is littered with bad memories. We pass the surgical waiting room “This was the place where Dr. Surgeon told me that he couldn’t operate because your peritoneal cancer was too extensive. This is the place where he told me THAT NOTHING COULD BE DONE.” We turn the corner. “That’s the place where I called my Dad crying, wondering how I was going to break the news to you.” Of course, all of that was a false alarm. I was back at this hospital having surgery a month later. But we left that day thinking that it was time to make final arrangements. We left that day and had to tell our kids that Mommy was going to die. Those memories burn and form permanent grooves in your brain that play like a record again and again in your mind.
I didn’t feel nervous until I entered this room. And then everything fell on me at like an overhead compartment after the contents had shifted mid-flight. The longer I waited, the more I began to feel certain that the news today wasn’t going to be good.
The wait today is longer than usual. The radiologist has not finished his report on yesterday’s scans. I hear staff out in the hallway, “Where is Dr. Surgeon? Does he know Stoker is here?” I hope that he is missing because he is tracking down my scans. I try to be patient, knowing that a very long wait is far from the worst thing that can happen today. Two hours past our scheduled appointment time he finally enters the room.
I keep having dreams
Of pioneers and pirate ships and Bob Dylan
Of people wrapped up tight in the things that will kill them
Of being trapped in a lift plunging straight to the bottom
Of open seas and ways of life we’ve forgotten
I keep having dreams
Frank Turner, “I am disappeared”
I had slept for nearly 10 hours the evening before. Something that I never do. Even stranger was the fact that my sleep was solid, without even waking to use the restroom. My dreams had been large as life, vivid. There were castles and evil villains and royalty and battles for power. When my husband finally woke me, I didn’t want to get out of bed so I rolled over to snuggle with him instead. I breathe in his scent. If comfort could be bottled, this is what it would smell like.
He was already nervous, but I was in a good mood. I lingered in the shower, enjoying the lemon verbena scent of the hotel brand shampoo. I applied my free sample moisturiser from Sephora that told me that I was getting moisture “straight from the clouds.” At breakfast, everything tasted better than usual. The latte, so creamy. The fruit, so sweet and rich. The bacon, so thick and crispy. I savored every bite whilst looking across at the worried line in the center of my husband’s forehead.
I used to think intuition was a myth. I am a firm believer in it now. My brain knew before I did that today everything was going to fall apart. “Take a deep breath” it said, “savor these last moments. Enjoy this sense of peace.”
The radiologist has not yet reviewed the scans and submitted the report, but I had a chance to look at them, and it appears that there is some progression in the liver. I blink, trying to process what he had just said. The CT locally had noted a few smaller tumors that maybe weren’t definitively seen on the prior report. My oncologist locally had told me not to worry about them: “they probably just weren’t picked up on the prior scan due to positioning, but I wouldn’t worry about them. Your largest tumors are unchanged in size, so everything looks stable, everything looks good.”
“So, my understanding was that all of my tumors except for one were in the right lobe. Wouldn’t it be possible to re-sect the right lobe and then simply ablate what is left in the left?” Uh no, here look at your scans- you see the tumors here, it would be difficult for me to ablate those and remove all of the disease. And of course, you know that you have disease outside the liver… surgery wouldn’t do you any good.
Last April, he told me that he had removed 19 masses from my liver. My largest tumor now is actually one of only a couple that he did miss during that surgery, despite it being larger than a centimeter at the time. Because of that surgery, I don’t have nearly the same amount of tumor burden now as I did then. Why was I operable a year ago, but not now? I think it, but don’t say it. If he had told me I wasn’t operable because of progression, that would make more sense… Maybe once I actually get to see the written report all of this will be clearer. We leave the office and head to another building to the oncology appointment we are now two hours late for.
I see that your CT from two weeks ago showed a mass near your uterus? Of course, I know what she is referring to. It’s the same thing that I had seen and freaked out about. My local oncologist soothed me back on that as well: “when they took the last tumor out, something had to fill that space. It isn’t solid, just fluid. I wouldn’t worry about it.”
I haven’t seen your scans from yesterday, but I think that it is very likely that cystic mass is malignant, given your history. Of course she does. Of course it is. I knew it even before she said it. We discuss the small hope that the progression occurred while I was off chemo, especially since my tumor markers have stayed stable since then. But more likely? I have failed FOLFIRI. The plan now is to stay with FOLFIRI for a few more sessions and in the meantime, begin to look for trials.
She looks up and writes down several trials that she thinks that I should look into. One of them might have an arm at the Clinic. She will call and ask about the whether the arm at the clinic is open and call me tomorrow about it. That this doctor has a list of trials to suggest to me and will make this one call makes me very grateful that I am seeing her. The majority of oncologists would just tell me to start looking into trials and then leave the room. The rest, I know, will still be up to me. To reach out to the Principal Investigator. To request and collect all of the documentation needed and provide it. To jump through all of the hoops. I am grateful for all of the help and advocacy I can get.
I walk out shell-shocked. I know what failing FOLFIRI means. It means that I’ve officially begun the very final story arc that leads to the end. I will have to begin trials without having a stable chemo option to fall back on except for third (and last) line treatment. The roller coaster ride has now become the type where you stand in an elevator and wait for it to free-fall several floors beneath you.
The three-and-a-half hour drive home is brutal. My stomach hurts. My head hurts. The setting sun is directly in my eyes. Exhaustion wraps around me like a shroud. I am tired of fighting.
In this moment, I am tired of fighting for doctors to be as proactive as I had pictures them to be before I got cancer. Instead, most are overworked and busy and flying by the seats of their pants. I am tired of being spun an over-optimistic narrative about my scans and unsteady assurances that will only break as I get further down the bridge. Perhaps they believe that the optimism will transfer over to reality, but but these fair-weather tales do nothing but lead me quietly down the primrose path to death. They also help with avoiding all of the uncomfortable patient emotions until the last possible minute. I wish that I didn’t have to see that simultaneous look of pity and distancing when they do tell me the news is bad. I’m just… tired. I wear it all over my face and body. My husband can see it as I curl up in the seat next to him. From the drivers’ seat he yells at me to not give up.
Silently, I hope that the tired and numbness will fade and transition over to anger. I know that I will need the anger to energize me so that I can begin navigating the choppy waters of clinical trials. But right now I need a moment. Because today everything got sharply real. Today death suddenly became a potentially near-term event. I hoped beyond hope that I could stretch out for years. But instead I am now trapped in an elevator that is now plunging straight to the bottom.
Arriving home, I eat for the first time since breakfast. I hug all of my kids. I snuggle my son to sleep. I try not to cry, not to alarm them. And then I crawl into bed and assume the fetal position. Nine hours later, my son is in my bed waking me up. Once again, I haven’t stirred during the night, but this time I remember nothing about my dreams. I am heavy, and opening my eyes and getting out of bed seems impossible. But I do it anyway, because my son needs my help getting ready for school, to keep him on task and to set the mood for the day. My dying will crush him. He is not emotionally mature enough to cope with this. This is so wrong! So very, very unfair.
But I know that life was never given to us with a fairness guarantee. I will have to leave him, whether he’s ready or not. I will have to leave my husband too. But first, I will have to put on his shoulders the enormous burden of caring for me while I am sick. That isn’t fair either. I will have to leave my girls- my normal, innocent girls- and force them to grow up to that unfairness of the world far sooner than they should ever have to.
I think about the near-misses. The moments in the past where fate, at one point or another, brought us very close to losing each one of our kids, but didn’t. I think about my 20-foot fall at age 12 where I broke 5 vertebrae in my back but didn’t get paralyzed. I think about mistakes that I’ve made which, by some miracle, I didn’t have to face the worst consequences for. I think about the advantages I had (which most people forget or discard) that helped me to get a well-paying job that turned into a career. I think about how my Dad losing his job in high school ultimately left me starting a new school my senior year of high school where I met my future husband. I think about how- given my upbringing- the deck was stacked against me going to and graduating from college. But I did anyway.
I also think about intuition and warning signs. About how in the months before my diagnosis I told my therapist that I felt like I was just waiting for a shoe to drop to balance out the scales after all of those past near-misses. I think about how I told my co-workers that neither of my biological parents lived to old age, so I had an unfounded fear that I wouldn’t either.
It was never “owed” to me that I was going to grow old with my husband. That we would be empty-nesters and watch our children become adults. That we would travel and see the world together. That I would hold a grandchild in my arms. It was never even owed to me that I would live for years after my diagnosis. But I still hoped that I would. I ache with resentment that I burned through my only two first and second line treatment options before I even hit 18-months past diagnosis.
I still want to scream from the rafters, “I was supposed to grow old!” That I was supposed to at least have a chance to see my middle child start high school. I still feel bitter about always being the youngest person at the chemo center. I still roll my eyes at people complaining about old age. I still feel sad when someone casually says that they “can’t wait” for an event a full year in the future when I am sitting across from them at the table and have a decent likelihood of not even being alive by then.
It’s irrational, but it’s real. And maybe it’s also good for me. Maybe it’s the anger that I need to get back up and out of bed and to make my life as vivid as the dreams that I have been having lately. To make this final arc and this very final chapter, as long and as fulfilling as I still still have the power to make it.