I tried to write a post-surgery update in the hospital, enabled by the comfortable drugs they give you in their care, but even the relief I felt with their “good stuff” couldn’t combat the overall lack of drive I continue to experience even now. With that said, I think I can squeeze something out.
Let’s first address the big question. Yes, I still have cancer. What this means for the future, I still don’t know, but the surgeons couldn’t get it all once again. So there is that.
I woke up from the surgery in the pretty expected state of mild confusion, then a slow creeping realization of where I was, what was happening, and a huge “Goddamn get this tube out of my throat” awareness. I was intubated in the ICU as I always am, but something was different. I could tell. I was more aware of myself and my surroundings than I have been after previous surgeries. I was almost TOO aware. For when they put in the first chemo infusion, the pain that filled my abdomen was almost unbearable. I was being overfilled, so it felt, and with each liter that poured into my body, the pain only grew. Suddenly, I was having trouble breathing. It was the kind of pain that forces you to take quick short breaths, as anything deeper would only increase the pain I was feeling. I mildly remember the nurses sternly telling me I needed to take deep breaths, and I remember the anger I felt in wanting to punch them in the face for having no idea what I was experiencing. I would have loved to have told them as such, but the tube in my throat left me incommunicative. It’s the worst feeling in the world, to be in such pain and unable to express that to anyone.
The blurring nature of the drugs leaves the details a little muddled, but at some point I was able to communicate that the drugs they gave me to kill the pain, did NOT work. I don’t know if that was after they removed the tube down my throat or, somehow, before. Either way, when I relayed my pain, they hit me with a shot of Dilauded and suddenly the world was a beautiful place again. The relief was instant and I was no longer scared.
From that point on, we eliminated the ineffectual first drug and switched to Dilauded. I still experienced some discomfort with the next four infusions and drains, but it was nothing unbearable anymore. All praise Dilauded.
For whatever reason, the tube down my throat was removed after the first day, which is a new record for me. One of the most immediate signs of my physical degeneration from surgery is my zeroed out lung capacity, which must be compensated for through intubation in the ICU. Usually I was intubated for 3 hellish days, but this time it was out after one. I was so much more alert and my lung capacity felt as strong as it was when I entered surgery, which is one of the greatest silver linings of this experience so far.
Each day I was alert meant another day I avoided the nightmares of Morphine I used to experience. Now it was only the normal pains and frustrations of all the tubes in my body, unempathetic or socially awkward nurses, and the waves of emotional breakdowns that would leave me in tears as I sat through such uncomfortable days, just psychologically and emotionally pushing against the torture of time. I remember nights where I woke up and immediately looked at the clock, to find it had only passed ten minutes. At some point, however, the ten minutes turned to 30, then to full hours, until I was getting 2 to 3 complete hours of sleep a night.
I was moved out of the ICU on a Saturday, I think, and up to a standard room, where I could then begin to walk the hallways and have more and more tubes removed from my body.
Overall, the experience was pretty similar to everything I had felt in the past, and my recovery was going so well that I got out in record time, leaving the hospital Saturday morning and getting home to rest in bed.
And that’s where the hopeful recovery seems to have stopped. I don’t know what the surgeons did differently this time, if anything, but the pain in my abdomen leads me to believe they were much more aggressive in their approach this time. I’m having incredible pain in eating, drinking, or managing anything that causes gas. Just having a relatively full bladder leaves me writhing in waves of pain that come and go. The mornings are the worst. Not having taken a pill since midnight, the ravages of the surgery are felt most distinctly as soon as I wake. I struggle to sit up straight and make it the few feet to the bathroom to brush my teeth just so I can take my first pill for the day. And mind you, the pain pills you get at home are NOTHING compared to what you get at the hospital. I was so deluded by the relief I felt at the hospital that I imagined going out for a run the first week out, but those delusions were quickly disappeared the first morning I woke up on regular pain meds.
I’m a week out and I still can’t sit up straight. Trips to the bathroom can last 30 to 45 minutes as I struggle against my abdominal muscles and the pain that fills my abdomen. I don’t even have the strength to blow my nose when I wake up in the morning, as just trying sends pointed pains throughout my stomach, and the strength to engage my atrophied muscles is just gone.
And yet, I need to eat. The obvious muscular atrophy becomes even more obvious with each passing day, as t-shirts hang off my bony shoulders, legs and arms are visibly skinny, and my hunched over back has me looking like an old man with scoliosis. But eating causes such incredible pain that I can’t get in the calories or nutrition I need to keep getting better more rapidly. No doubt I AM getting better, but it’s a little too slow for my ambitious nature. Not to mention, there’s only so much yogurt one can eat before it gets a little too repetitive.
But you know what, that’s enough cathartic whining. Today I pushed myself to attend the Winter Run Group I started and that other runners and friends of mine have continued to host in my absence. I took a pill, convinced Laura to drive me to the run, and enjoyed the morning seeing friends I haven’t in awhile. I also pushed myself to walk 2 miles, which seems like a joke, but the previous descriptions hopefully convey otherwise. It wasn’t easy and I actually felt muscular strain and an old focus I often resort to at the end miles of a long run. I had to limit my conversation and just keep moving forward to make it back inside and finally get off my feet. I don’t know if I’m expecting any recovery value from trying to be active, but the psychological aspect of getting back out there definitely felt good.
That’s all in the now though, and the greatest open question for me is what is to come of the future. I have great motivations to start working again, to live free of surgery long enough to get off assistance and back to a stable income, and to ultimately just live closer to my old life again. The details of my cancer, however, are a bit elusive right now. My surgeon is on vacation, so I actually haven’t talked to him since before the operation…at least, I don’t think. I may very well have seen him in the ICU, but my mind hasn’t retained that memory. The story I have of the operation is only broken pieces handed to me by Laura and my family.
I remember something about the surgery went great, even thought it was another 15 hour ordeal, but the cancer remains. I don’t know how much more cancer they removed and where it still remains, but they did remove more. Even more encouragingly, the spots where cancer once resided, and they removed, now look like cancer was never there in the first place. So there was no regrowth or extensive damage.
But the cancer is still there, and I think that means I won’t be going back on systemic chemotherapy treatments. It’s odd to feel relief at this possibility. Going back on systemic chemo meant that they removed all the cancer and they were just making sure no stragglers were left behind, which would have been great, except it would have meant I would have gone back on chemo….and that’s no fun. It’s a weird dynamic to reconcile, to know I won’t be back on chemo, but that’s only because I still have cancer. If that doesn’t convey just how awful that necessary treatment feels, than I don’t know what will.
I also remember talk about a future surgery timeline that may extend 2 to 3 years. One of my realistic best case scenarios going into this surgery was being able to live with this cancer for a number of years without surgery, without the necessary interruption that halts everything I have built in the moment and which prevents me from building so much more on a long term basis. I want nothing more than to just get back to my normal life of expected income and routine. There is a lot of privilege in having a self-directed life, even one enabled by cancer treatments, but that privilege feels less comfortable when you have a child to take care of.
There was also talk of “involution”, which I’m kind of over hearing. The oncologist often puts a positive spin on my situation and talks about other patients experiencing involution, where the body’s immune system goes into overdrive and takes care of the remaining tumors on it’s own. That’s a nice potential, but I’ve been hearing this since the first surgery, with no evidence of involution, not to mention were talking about cancer and the law of averages. Involution is rare. Very rare. It’s probably not even worth mentioning unless you’ve been taught to coach positivity. If the body involutes, then we’ll find out on scans, otherwise, let’s just not worry about it. That’s how I’d like to handle it anyways, because the potential of going back on chemo is probably far greater than the potential for involution.
At this point, I don’t know what lies ahead. I’ll only know that when my oncologist returns from vacation and I have my first follow up. It’s then I’ll be able to ask how much progression they made during the operation, how many years I have of surgery free living and if I have the agency to roll the dice again and wait it out. I don’t know, just the consideration of rolling the dice scares me a little, because it sounds like an unconscious tiring of surgery, of not wanting to continue through this insanely difficult ordeal. Maybe I don’t wanna do this again. Maybe I just want to let the process carry itself out. Maybe I’m losing perspective. I don’t know, but this has never been and never will be easy.
For now, I’m just laying low, trying to wait out the pain and discomfort, cutting back on pills to avoid becoming dependent, and anticipating the follow up with my oncologist so I can get a better picture of what happened and what is going to happen. Unfortunately, there is little else I CAN do.