This month marks one year since a doctor discovered my cancer, so I guess it’s fitting that the post-treatment wait-and-see is a return to that in-between void that was November 2019 to March 2020: an infinite space of no-answers-only-questions and we-can’t-be-sures where all I needed to know was what type of cancer it was, what the treatment would be, and how much time I had. You know, the basic questions you expect to have answered after someone tells you about the giant tumor in your chest.
The Waiting. It’s a special hell where you float, untethered. You could just as easily slip up and away as set your feet back down on earth. You play cards with Impending Doom, Mortality, and Anxiety, all of which fidget and hum and can’t decide whose turn it is, and your Future is perpetually stepping out the door with a sad glance back at you. A question mark sits on every thought. Can you make plans for your birthday? Will you be able to vote? Will you live long enough to see a new president? Will you be there for Thanksgiving? For Christmas? A tear slips down your cheek. Life’s a record skipping. A song repeating. Your heart miraculously keeps beating.
After chemo and radiation, I expected to have a clear answer about whether I’d achieved remission or was headed the other way into progression. Even as other PMBCL patients on social media talked about how unclear and anxiety-ridden post-treatment can be, my oncologist and his PA seemed confident in the path forward: finish chemo, then scan, then remove port, then monitor remission with routine scans. Unfortunately, that hasn’t been the reality. I’ve been set afloat again, bumping forward to another appointment of I-don’t-knows. Port still in place.
It’s very unnerving to trust your body to oncologists, who were so confident at the beginning of chemo and at the midway point, to let them put you through the agony of chemo and radiation and get “I don’t really know” and “we’ll have to wait and see” after. I’ve been casually dropped back into November 2019 and memories of all those nurses/PAs/doctors who had told me it’s probably nothing or it’s probably just allergies or it’s just a sinus infection or it’s just bronchitis before one doctor discovered it was cancer all along. PTSD activated.
My oncologist’s PA is nice, but he sugar coats and leaves out important info, and it will have been half a year since I talked to my oncologist directly when I meet with him in January 2021. Information relayed through his PA is always on a couple-month delay because he has to check in with my oncologist on questions I bring up that he can’t answer himself.
Yeah, no, it’s fine. I’ll just be sitting here, staring into the void, pondering my mortality and delaying plans for the future.
Is it too mean, when I finally meet with my oncologist again, to say, “Hey, I haven’t seen you since you told me I wouldn’t have to do radiation.” Too passive aggressive? Too fucking on point? My body, at least, has never made me a promise it couldn’t keep. When doctors said, don’t worry about it, my body whispered, there’s something definitely wrong here.
Starting mid-chemo, I’ve had significant pain in my lower back when I walk or stand for more than 10 minutes. I’ve mentioned it every appointment since it started. It’s so bad that I have to take numerous breaks while washing the dishes and cooking, and my daily hour-long walks have been shortened to 20 minutes at most and only on days that I can tolerate them. I thought the pain would gradually go away post-treatment as I rebuilt my tolerance for physical activity, but it hasn’t yet. The oncologist suggested it might be arthritis. The radiation oncologist said I’m too young for arthritis (too young for cancer, too, which is probably one reason why none of the nurses/PAs/doctors thought to consider that possibility). On my latest appointment, the PA suggested an MRI of my spine if the pain continues or gets worse since the PET scan isn’t enough to tell what it could be.
Post-treatment, it also feels like I’m breathing with baby lungs. Taking the pugs for a walk leaves me gasping for air and utterly destroyed after. Walking, once a great joy for me, is anything but now. I often feel dizzy upon standing or just randomly throughout the day, sometimes to the point where I feel I might pass out. You know, many of the symptoms I had pre-treatment. PTSD activated. And the PA just makes a note in my chart.
I also had two periods in September and no period in October. My chemo can initiate menopause. I ask the PA about it. He’s surprised my periods didn’t stop during chemo but doesn’t say anything beyond that.
PA: Anything else?
Apparently, I’m supposed to stay vigilant for secondary cancers and recurrence, but any symptoms that align with those will simply be noted. “Well, we don’t really know.” “We can’t be sure.” “Let’s watch and see.”
I’m not asking for the world here. I’m just asking, are these symptoms normal for someone who’s been through what I have? The PA: maybe/maybe not.
When I brought up the back pain or fatigue on past appointments, the PA always asked, but are you still feeling better than you did before treatment? My answer was always yes. He didn’t ask this time, as if he knew the answer is now no.
In the past year, I’ve been through several procedures, tests, and scans, including a thoracotomy. So when I say I hate PET scans, I mean I FUCKING HATE PET SCANS. Like, don’t even talk to me on PET scan prep day or you will feel my rage. And these things are crazy expensive ($4,000-$8,000), but doctors can’t be absolutely sure if what lights up is infection, inflammation, or remaining cancer cells.
Why put me through one if it’s not going to show anything useful?
When I got the results of my post-chemo PET scan, the PA told me my suv max had increased by .4, and they really couldn’t be sure if that was due to inflammation or surviving cancer cells, so he recommended we do radiation just in case, since my type of cancer, when it does recur, tends to do so soon after chemo, and the risk of recurrence remains a concern for two years following treatment (less so after). And if my pathology report is correct, my cancer is ornery and not to be trifled with. I read others’ experience with radiation, received some excellent advice from a fellow person with PMBCL, and met with the radiation oncologist, who also said he’d do the radiation if the choice was his. So I pushed the risks and my own stubbornness aside and did it.
My post-radiaton PET scan was supposed to tell me if I’d achieved remission or not or, at least, that’s what the PA led me to believe. He scheduled it for a month and a half after radiation to give the inflammation caused by radiation time to go down. But when the scan results came back, the suv max in my residual tumor had increased almost a point since my previous scan. The PA said the areas of increase were in the radiation field so it could just be inflammation.
I tried to remain focused on the appointment, but of course my rage had other ideas. I’d decided to do radiation based on a .4 increase, at the PA’s recommendation, but now I’m just supposed to hope an almost full point increase is inflammation?
On my way out of my latest appointment, I asked for a copy of my PET scan results and discovered much more concerning info that the PA didn’t even mention: “Consolidative right perihilar opacities” extending into all lobes of my right lung, with an suv max double that of my residual tumor, and “patchy consolidative and ground-glass opacities” throughout my left lung, same suv max as my right lung. A note toward the bottom: “Bilateral FDG avid pulmonary opacities, concerning for infection although lymphomatous involvement could also cause this appearance.”
Great. So I could have pretty extensive lung damage from the radiation. Or an infection that I guess we’re just letting hang out for now. Or my cancer has metastasized to my lungs. There’s my answer to why I feel like I’m breathing with baby lungs, I guess. Impending Doom, Mortality, and Anxiety start humming “Don’t worry, be happy.”
And all the while, friends and family are asking for an update. And the insurance adviser wants to know what my new prognosis and treatment plan are so he can find me a less expensive but still not affordable insurance plan. But all I can pass along is, I don’t know.
So as memories of last November wash over me–the solemn drives to Salt Lake City, the appointments and biopsies and tests, the trauma–this is where I live: I still don’t know.