I went for my first run of the year today. I don’t run entire distances anymore- I do the alternating walk/run method, and I love it. There is no panic about being able to “make it” somewhere, or “having to walk”: walking is built in, and expectations adjust accordingly. I spent today and yesterday trying to re-enter my body after I had to leave it for about a week. A lump in my reconstructed breast forced me into the panic room inside myself, a walled-off safe room meant to survive intruders and atomic bombs. It’s bare bones living there- when I’m inside the panic room, all I can hope for is survival.
The past four weeks have been some of the most stressful of my entire illness, which is surprising since I am nearly two years from diagnosis, and nothing really bad has happened, and I don’t have cancer. I haven’t been hospitalized. About three weeks ago, I got the flu, and I was misdiagnosed with pneumonia when I went to the hospital. I couldn’t breathe all that well, and a preliminary chest X-ray showed pneumonia, so they diagnosed me and sent me home, telling me to return if I felt any chest pain at all. They suspected that I could have a blood clot in my lung, because I had several of the risk factors, like recent surgeries, a history of chemotherapy, and the use of hormonal replacement therapy. Blood clots in your lungs, or pulmonary embolisms, can be fatal.
The next day, I had chest pain. I also had a cough. I thought that the chest pain was from the cough, but they had scared me so badly the day before that I went back to the ER. If you would like to see ER docs hop to it, tell them my medical history. A well-meaning resident came to tell me that in addition to all of the previous symptoms, I had an elevated D-Dimer, which is apparently the blood test that can indicate a blood clot in the lung. He said he was very suspicious that I had a pulmonary embolism. So, I spent about an hour waiting for a chest CT, afraid to move, thinking I might dislodge the clot and send it to my heart. The CT showed that not only did I NOT have a blood clot, but that I didn’t have pneumonia either. In fact, all I had was influenza A. The flu. I had the flu. The ER doc was like, never mind! Drink fluids! See ya!
I healed, but I had noticed another issue. I had a lump in my left breast. It was obvious, and prominent, on the top, where I’d had some fat grafted onto the implant to make it look and feel more natural. I sat on the information for about a week, waiting to make sure I wasn’t crazy. After all, I DON’T HAVE ANY BREASTS SO THE LIKELIHOOD THAT I WOULD GET BREAST CANCER AGAIN IS LOW (although, not zero- it can recur on the chest wall). However, I survived high-grade triple negative breast cancer, which is aggressive and likely to recur within five years of diagnosis, with the highest likelihood of recurrence between two and three years after diagnosis. So, I am on the lookout. Every small, inconsequential thing in my body could be the beginning of the end. Also, contrary to the first time I got it, I now have physical sensations attached to my fear of cancer- I know what I’m in for, and it ain’t good. My naivete worked to my advantage the first time in that I was blindly able to remain positive and I also didn’t ever see what next painful thing was coming. I was able to say, “Thank god that’s over!” when I passed through a particular phase and believe that it was over. This was a blessing!
Anyhow, I finally got in to the doctor last week Thursday for an ultrasound, thinking they would be able to see it as fat necrosis, which is a gross name for a benign condition where dead fat cells clump up after surgery. It’s a common thing in breast reconstruction. I thought they would send me on my way, and that would be it. Except it wasn’t. I had to have a biopsy, because they couldn’t rule out malignancy with ultrasound. They even tried to give me a mammogram with my reconstructed breast. Such a delight. Actually it wasn’t. It was like someone trying to put my fake boob in a vice that was too far away, and it showed nothing. So, I had to wait until Monday morning to have a biopsy.
When the radiologist told me that I would need a biopsy, I wasn’t really aware of it, but I left the whole of my body to get to my panic room deep inside myself. In my panic room, I don’t feel much pain per se, though it is cramped and uncomfortable, and I am angry as hell. Also, the walls are plastered with pictures of my sick self, my kids living without me, my Aunt Elena, images of sadness and pain. I pass the time there by thinking about the letters I will write to people to try to handle the fallout of a recurrence. In my mind, I had written the email quitting my Ph.D program. I had written the letter to get me out of my lease in graduate student housing, because I would no longer be a grad student. I had practiced the talk I would have with my kids to tell them I had cancer again. I wrote the emails to their teachers, to their school psychologists. In my mind, I wrote the blog post talking about my recurrence- it was mostly the “f” word. I had thought about what it would be like to rejoin our cancer support group at Gilda’s Club. All of these things ran through my mind between Thursday and Monday morning.
At the biopsy, like previous medical professionals had during invasive procedures, the radiologist wondered if I was ok during the procedure, because my face showed so little reaction to the fact that there was a gigantic needle in my breast. I wanted to say to her, of course I’m fine; I’m not even here. The body you are poking right now is far away from the room where I’m hiding inside it, and so I can hear ominous steps on the threshold, can hear my world falling apart, but I don’t feel it. I am safe in this little, small space where I go when things become too painful in my own body.
I mentioned this ability to hide in my own body, to have invasive medical procedures and not feel pain, to my therapist, and the look on her face was so sad that it reminded me of the thing I cannot escape: the fact that I have to leave my body because it is too painful sometimes is both one reason I am still alive and it is also very, very sad. Perhaps with more time between traumas, I will be able to stay in my body and experience the pain as a finite experience. Maybe I will be strong enough again, but right now, after two years of surgeries, chemo, infections and overall illness, I can’t.
As it turns out, the biopsy, thankfully, revealed fat necrosis. I am so thankful for this- I get to continue on with this life I’m trying to build for myself and my family. But, I’ve had to spend the past two days recovering from this experience of not having cancer. Not the physical part- I want to assure anyone who ever has to have a biopsy that they really aren’t that bad from a physical standpoint. But, it’s taken me two days to coax myself back into my body, out of the panic room. So, I went for a run today. It felt amazing. I cried, and not just because I am so out of shape. I listened to The Weepies, whose album Sirens is partially about recovering from breast cancer. I haven’t worked in a few days, which, if you know and understand where I’m at in my academic trajectory, is nearly sacrilege. But, as I’ve come out of the panic room into my body, it’s a mess out here! This body is exhausted from being ravaged by stress, and so I’ve been eating and sleeping to clean it up, get it working again. I’ve been holding my children as much as possible: driving them to activities, and stealing their hands to hold.
Tonight, I took Henry to karate. We’re working on controlling our bodies. We’ve both got a long way to go. In any case, I asked him what his favorite part of class was when we were on our way home, and he said, “It was the part where you were laughing so hard.” Then, he proceeded to tell me knock-knock jokes he’d been storing up from a book of knock-knock jokes he’s been reading at school, “to make me laugh again”. I forget that when I’m in my panic room, all the people who love me know it. My kids can feel it, even though I don’t tell them what’s wrong. That’s reason enough to try to never go there again.
I write about this here because I notice that there are parts of the cancer experience that are visible and well-known to folks without cancer, and there are other parts that are less so. The public narrative around cancer recovery is that you get cancer, you recover, and then you just skip off into the rest of your life. Um, I know it’s cruel to reveal this with Donald Trump as president and all, but that’s not really how it goes. It’s a chronic physical condition, for one thing, but more importantly, even if the cancer never comes back, that doesn’t mean the pain and fear is gone. I hope it is helpful to know this, if only to help you be conscious of your local cancer survivor and how their illness affects them, even if they are years into recovery.
As usual, thanks for reading. I am going to try to write a series of posts about post-cancer recovery life, for the reasons I’ve just mentioned. I hope they are helpful!