Holding My Breath

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Last week, Nico and I went to Chicago where I spent two days in various appointments getting my body checked out. I got a contrast CT to check for lymphoma, and also had a breast biopsy because one of my (many) CTs during treatment turned up a small mass in my right breast. Following imaging in February (almost exactly a year from the day I found out about the first mass, because that is what I needed right at that moment apparently) we needed to get it checked out. It was a long, rough couple of days, but we found out at the end that I continue to be cancer-free six months out. I am relieved and happy and feel lucky and guilty all at once.

Here’s some context: After we moved, I wanted to act like I’d never been sick. I went out at night, I stayed up late, I drank as much alcohol as my friends who hadn’t had poisoned pumped in their bodies for months. I traveled for long periods, ate lots of restaurant food—which was not entirely my fault, we didn’t have cooking gas for the first month in our disaster of an apartment. I was overwhelmed by the move, our apartment issues, the realization that we might never have children, that my life has changed in ways that are still beyond my control. I hated (and still don’t love) how I looked post-treatment, it was cold and I was traveling so I was never home for long enough to develop a routine. I didn’t do yoga, go for many walks, or really exercise at all. When I was in town, I constantly needed to be in the apartment to let in someone to fix something or was on the phone with the city or a housing lawyer or the horrible, deeply sexist management company who ignored all of my messages until Nico started calling instead—this part hasn’t changed, as I write this I’m waiting for yet another plumber and will do the same thing again tomorrow—and so I was stuck here alone all the time without a working kitchen to easily make healthier meals. So I stopped trying, floating along in a haze of exhaustion and pushing myself to seem normal.

In the weeks before the scans, I did everything I could to ignore them. In both New York and St. Louis, I got to see my high school friends, a hilarious group of people I have known for 20 years. There is something comforting about letting your guard down with people who have seen you grow up. But that comfort (and too many drinks) also brings out the sadness and insecurities that I’ve been trying to bury and avoid in my daily life. It’s harder to hide around these people. It also reminded me even more of the person I used to be all the time and now only really get to be once in a while and with quite a bit of effort: fun, lively, running around and playing with my friend’s two year old while drinking a gin and tonic or drinking and dancing out at a bar after a Blues game. I’m fine, I told myself, I’m fine. But I wasn’t, and I’m not, and I’m months behind in recovery. I did a lot of crying on Mother’s Day over the complications of whether we’ll ever have kids, something that is looking far away and out of reach for a lot of health reasons (a post for another time, but that holiday is loud and obnoxious in a way I never appreciated before. We get it, everyone.). I was not handling things gracefully. 10 days before the scans I realized that I wasn’t doing what I needed, but I wasn’t really sure what to do next.

Then last week was a little more eventful than I expected: First, we didn’t hear anything the day of the CT. Usually we get a call the afternoon of the scan, but by 6 PM we accepted that there wouldn’t be news. Nico was fidgety, anxious; I was quiet and calm, turned inward. I focused on the biopsy and put the CT out of my mind, even though the CT tech had switched from warm and friendly before the scan to formal and nervous afterward, a switch I’m familiar with from previous tests.

I arrived the next morning, nervous for an unfamiliar procedure but still strangely calm. I was shepherded through the spa-like breast cancer center (it is so nice, you guys) by lovely, bilingual nurses, changed into a fuchsia gown, got the friendliest ultrasound I could ask for, and arrived in the room to sign my consent forms for the procedure.

The doctor was a man, which in a large suite filled with nothing but women surprised me. Is this very young man lost? But he was polite and walked me through what they would do: injections to numb the area, a small incision, take 4-5 samples, insert a tiny metal tag so that on future scans they’ll already know they’ve checked this particular mass out (like sharks in the ocean, except in my boobs). I knew what the procedure would entail, and probably because I have survivor friends who regularly have to get much worse things like spinal taps and have had much worse procedures myself, I’d come around to being not freaked out about it. Then he told me that they couldn’t tell from imaging whether this mass is a lymph node or not, so they need to do extra testing on the samples, and consequently we wouldn’t get results for at least a week.

This caught me completely off guard. No one mentioned this possibility at my ultrasound and mammogram in February. I immediately jumped in with questions: It might be a lymph node? Do you know I had lymphoma? He looked a little uncomfortable, possibly because he realized this was all news to me, and he said yes, that that’s one of the reasons they need to be absolutely sure it’s not. This was all five minutes before the actual procedure, which for reasons I do not and will never understand, they don’t provide ANY SEDATIVES OR RELAXANTS. Not to constantly use the trope of “if this happened to men,” but I do wonder if they would do an incision on a sensitive region on men without any relaxants. After some research I realized that standard procedure is just to numb women up and hope they don’t freak out. It is insane. After I signed the consent, I took part of an Ativan that I’d brought along, but it didn’t kick in in time for the procedure. So I was wide awake, trying to process this lymph node possibility while I laid on a table and Dougie Houser cut into my right breast. Because apparently I am unable to stop myself even in intense moments, I kept asking questions.

A woman doctor—I think she was the attending and he was the resident—was in front of me, trying to keep me chatting and distracted during the procedure while I laid propped up on my side with my right arm up, Dougie behind me, and two other female nurses assisting. I squeezed the little stress ball they gave me (if you ever get this procedure, I highly recommend the stress ball because it actually helped a lot) and breathed slow and deep as they explained what was happening. I mostly ignored them and continued with my own agenda: I don’t understand, I insisted, why can’t you tell if something is a lymph node? Isn’t science further than this? What would that mean? What would happen next? I asked these in rapid succession, as the woman doctor tried to calmly answer each one in between giving occasional instructions to everyone.

Apparently irregular (read: cancerous) lymph nodes are tricky to identify—“so does that mean it could only be irregular if it’s a node, what does that mean?” The man doctor replied this time: That why they’re taking some extra samples, so that if it is a tumor they can do all the tests they need. This was not the right response and I asked even more questions about whether this could be a tumor. Of course it could, that’s why I was getting a biopsy, but in general I don’t recommend doctors using the word “tumor” while they’re cutting into a patient. He backtracked. It could just be a cyst, we just don’t know, we’re being cautious, etc. At one point, they had to stop and give me more numbing because I started to be able to feel too much of what was happening. He explained that they were cutting at a dense area so the pressure is more intense. “So you don’t think it hurts because you’re cutting into my body?” I asked, and that time got a small laugh from him. Next he claimed that it shouldn’t hurt, and in return I pointed out that he was the only of the five people in the room without breasts. All in all, I was a delight of a patient. But at least I stayed calm and didn’t move even though I wished I was a little chemically oblivious of this situation.

Once it was over, I started to cry. I was annoyed and embarrassed because I have been through so much worse than this, but we still hadn’t gotten the results from my CT and to hear that this could also be a lymph node was an intense combination. They kept asking if I was in pain, I kept shaking my head no, and I silently took the tissues they offered as they comforted me, reminding me that it was over. Half numb, half crying, I went and got the post-procedure mammogram and the nurse was so sweet, telling me that everything would be okay. But once you’ve been told you have a tumor once, you never really believe them again. Back in the changing stall, I sat on the bench and sobbed for a bit. Here we are again, I thought. Then I got my shit together, got dressed, washed my face with cold water, felt the Ativan kick in comically just too late to be helpful, and went on my way.

A couple of hours (of drug-induced sleep) later, we arrived back at the hospital to meet with Dr. K. I tried to check in for bloodwork and my appointment, as I have dozens of times before, and they told me that I didn’t have bloodwork scheduled and would be sent straight to the doctor. This has literally never happened; it felt ominous. Immediately, I started to scenario plan: best case is still a clean scan, medium case is that there’s some swelling of the nodes and they need to do a PET tomorrow, worst is that we need to discuss treatment options, worst-worst is they need to admit me. I started to think through what was in my suitcase at home—I hadn’t packed the robe I like to travel with, which is a favorite hospital item, and I’d need to pick up some shower shoes, but I pretty much had anything else I’d need for a stay.

The weird thing about these moments is that we can’t let anyone else into them in real time. I can’t text my sister or my friends or any of our parents and say hey, something doesn’t feel right, we think we’re getting bad news. You can’t drag anyone else in, because 1. It’s needlessly selfish—telling them won’t change anything and it will only marginally help us and 2. then we’d have to update them quickly. And whether we get good or bad news, our time with Dr. K is precious and we don’t want to be distracted. If I could somehow control all of this this, I would actually prefer to receive bad news totally alone so that I can process and share with Nico later and be prepared for his response. But annoyingly there’s no box you can check that says you want good news with people there and bad news alone. So we sat in the crowded waiting room, not texting anyone, both staring straight ahead, silent. Occasionally one of us would say something like “but this could mean nothing, it could just be a clerical error” and then lapse into silence again.

Finally, we get in the room. Dr. K walks in, upbeat, cute new haircut, ready to roll. “Your scan looks good,” she says as she pulls up my chart. We both exhaled with relief, bringing ourselves back from the point of quiet panic we’d started to approach. She looked almost quizzical at our intense reaction, and I explained that because we hadn’t heard anything and they’d cancelled my blood work, we were convinced something was wrong. Oh! She said, no, the port draw is just really backed up today and they must have cancelled to make sure you still met with me on time. She didn’t even realize they’d done that and I’d need to go to another lab for bloodwork. I laughed—this was such a ridiculous, loaded coincidence.

We talked through my scan: no signs of cancer, but we can see how big the remnant of my tumor is, and it is…not small. At 8×4 centimeters, it’s quite a bit of scar tissue that isn’t going to go away. Right now, some of it is wrapped around the blood vessels at my heart. It doesn’t look like the tissue was constricting the vessels, but she wants me on baby aspirin basically until further notice to keep everything moving. On one hand, I wasn’t surprised. I could still feel things in that part of chest, occasionally sitting up gasping for breath late at night because something wasn’t pumping quite right, sometimes having some swelling or aching in that old familiar spot. I thought more of the tissue was gone and this was in my head, that there was an indiscernible amount left. To hear that I was reading these instincts about my body correctly was a weird little relief. And in the grand scheme of cancer side effects, this is low-impact. It also explained why the CT tech was quiet–seeing something that big on a scan usually means something BAD, so now I know my baseline looks much scarier than it is.

People don’t necessarily know how to respond to how fraught and stressful these days can be. Some barely acknowledged the news as it all rolled in. If you’re ever been sick, this hurtful phenomenon might sound familiar. But others were great, said lovely things, told me they were thinking of me, asked how I was doing, sent me funny pictures and generally communicated that while we’re never out of the woods, they want to be in the woods with me. I appreciated this and it fueled me through the week. But that night I was mad. I wanted this over, I wanted resolution, and I hadn’t wanted to hear that there’s still a softball sitting in my chest, that my old dresses won’t ever fit again, and as I laid in bed with an ice pack over my bandage, the week without results stretched out in front of me like an eternity.

But I slept hard that night, and was emotionally much more buoyant the next day. We will deal with what comes, and just need to put this waiting out of our minds. We switched our flights to leave a day earlier, ready to get back to New York and our usual brand of pretend normalcy. We went to our cousins’ house, spent time with them and their new, adorable and very chill baby, and got back to the apartment we stayed in for the week (thank you to our lovely hosts if you’re reading this!). I got a call from a random 312 number; it turned out it was Dr. Dougie from the day before. He told me that they didn’t need to do the full tumor testing; they had results early because the mass was completely benign. I think he enjoyed this Friday afternoon good news because he ended by telling me: “And we won’t need to see you until your mammogram at 40, everything is fine.” I just sat down on the floor where I stood and thanked him profusely before I hung up. Nico came in the room, I told him, and he sat down on the floor too. I was suddenly deeply, down to my bones exhausted. I didn’t realize how much anxiety I’d been carrying around with me, and I was happy and relieved and temporarily so paralyzed with fatigue that we waited a few minutes to tell our families.

That night, I slept ten and a half hours after weeks of insomnia and fitful sleeping. I am not a good sleeper and really never sleep that long. When I woke up, I thought about these past few months and days. I realized that ever since we left Chicago, I’d been holding my breath. Yes, the move has been hard, but I also never accepted that it was permanent. Unconsciously, in some corner of my brain, I was waiting to be told that we needed to pack up and spend another few months in treatment in Chicago. I didn’t trust remission and we’d been burned on this move before. Part self-protection, part anxiety, part fear, I’d kept myself moving; I hadn’t accepted where my body was in recovery, where we live now, or what this life might become. This wasn’t irrational—the chance that I could recur is not terribly low. But I hadn’t done the quiet, daily work of creating a new routine and taking care of myself.

Here I am: six months cancer free, incredibly lucky, and trying to face some realities I’ve been ignoring. For two years before diagnosis, I worked full time and went to school and interned at intense places while the cancer grew and slowly wore me down. I was constantly fatigued and sick but refused to let it stop me from doing what I wanted to do until I was finally too sick to continue. I have to remind myself that I’m recovering from years of illness, not just this year of treatment. It’s going to take time–something I am infinitely lucky to have more of, especially without intense daily medical interventions.

So no more pretending that I can just flip a switch and be better; I have work to do. More exercise, more writing, more yoga, healthier food (but not too healthy, I still love to eat!), earlier to bed, less travel, less social stuff, less booze. I’m going to do consulting work because I love to work and miss it (and you guys did you know New York is expensive??), spend as much time outside as possible, explore our new city but then go home and sleep as much as I can, read books now that my cognitive effects are finally starting to go away, cook all the things, and generally find a new rhythm in this new life. I’m not going to waste the gift of six months cancer-free, no matter what might come in another six months. No more holding my breath.

1 Comment

  1. Kip says

    You are so amazing!! Your post was so emotional but I was glad to see it end on a brighter note of self-rediscovery. Xoxo

    Like

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