Initial Surgery
Note:
Some of the reason I write this stuff down just as a journal, so I can look back on what my mindset was. I forget things easily, even things as seemingly unforgettable as ‘how I felt during cancer treatment’. Seems I’ve made it thru my sub-150lb phase without a whole lot of photos of me – I don’t need Facebook reminding me of this time. I do need something, tho.
Point being that some entries are entertaining well written accounts of my thoughts, and others are boring accounts of events. This is, without apology, more the latter.
Pre-Appointment Status:
Today is a big one. Last night I got an MRI of my pelvis. The results from that MRI are used to re-stage my tumor. The intent of the radiation treatments and subsequent chemo were to shrink the tumor so that surgery is easier and more effective. My hope is that the tumor is smaller. My dream is that it is no longer detectable. The term for this level of response is Complete Clinical Response, or CCR.
The odds of CCR from short course radiation followed by 8 cycles of FOLFOX chemo is somewhere around 20 to 30 percent. Not great odds. So I’m trying to temper my hopes for this morning’s results.
I’m typing this while sitting and waiting for my appointment. I’ve got an extra 10 minutes or so.
This appointment is going to be traumatic either way. A full rectal exam without any anesthesia isn’t fun, and I know this already. You should too, and you should go get a colonoscopy if you haven’t. My experience is that in comparison to a full rectal exam, the colonoscopy is downright pleasant.
The instructions for appointment prep included an AM saline enema, from which I’m still recovering. Still, the prognosis coming out of this appointment is important. Today is a day that I can receive good/neutral/bad news. In an effort to temper my expectations, it is worth quantifying what would constitute good news.
Bad news would be no tumor downstaging at all. That would pretty much mean that the past 5 months of treatments were a waste of time. It would have been better to just plunk me into the OR back in November when I was diagnosed.
Fair news would be some downstaging of the tumor. Some shrinking of the surrounding lymph nodes, etc. That’s about what we expect to hear.
Then there is what Karen and I are calling ‘The Ralphie’, in reference to the scene in A Christmas Story. I told Karen that my ideal interaction would be the surgeon asking me what supplements I had taken in the past 4 months. He’s trying to understand what factors went into one of the best tumor responses he’s ever seen, and a complete clinical response for sure. Karen compared my fantasy to Ralphie’s teacher grading the Red Rider BB-gun essay – ‘A + + + +’.
In the past few months, I’ve gotten early radiology reports from Duke’s MyChart system. It has led to panic in some cases, where a software engineer tries to make sense of radiology’s technical jargon. In this case, they’ve clamped down the radiology report. I keep checking my phone to no avail. Maybe they want to deliver the good news in person. Maybe it is terrible news, like spread to other adjacent areas or just no shrinkage at all. And then again, maybe it is just new protocol. Sending every patient raw radiology reports as soon as they are pushed into the system can’t be good for overall morale – Of patients or doctors. Some software engineer probably didn’t understand that.
In any case, I’ll know more this evening than I do now. I’ll close this portion with a note to myself to try to cope with whatever news is coming in a productive way. If it’s good news, try to celebrate it a little - Even though it’s about the 3rd inning, home runs deserve a hi-five. Neutral or bad news will mean continued strength and perseverance. In the event of ‘The Ralphie’, the rest of this entry will consist of exclamation points.
Post-Appointment Status:
I had more than 10 extra minutes, that’s for sure. Didn’t see the doc until about 1:30AM for a 10:30AM appointment.
In summation: Meh. No bad news, so that’s good. According to the MRI, the tumor didn’t shrink very much. The surrounding lymph nodes do look better than they did initially, so that’s one for the win column. MRI didn’t show any additional spread of the cancer.
Had to self-administer 2 enemas today to prep for a rectal exam. The enemas caused rectal irritation and bleeding. Surgeon couldn’t see the tumor during the exam due to the copious amounts of blood. Blood due to the irritation from enemas. The enemas used to prep for the exam.
I’m down for a few reasons (apart from acute rectal irritation).
I was really focused over the past few months on trying all kinds of things to get my body to expel this cancer. I read up on supplements and vitamins, tried fasting during chemo, amped up my iron consumption for a while. Also, all cool vibes, prayers, and best wishes were heartily accepted. All while undergoing the standard medical treatments. I wanted to be in that special 30% of Clinical Complete Response patients. Today that possibility went away. All my trying added up to about zilch.
I was also hopeful that there was still some possibility I could go on the ‘watch and wait’ protocol and duck surgery entirely. It was somewhere between ‘a small secret hope held deep in the heart’ and ‘lottery ticket’. With the tumor still visible on MRI, it’s not remotely an option. Bright side is that’s one less decision to worry about.
Now I have a surgery date. My first surgery is scheduled for June 23rd. Likely a 3 day hospital stay involved. Robotic surgery. Can’t drive for 2 weeks after, can’t lift anything for 6 weeks. I was told I could walk ‘as much as I want’. I’ll have a temporary ileostomy after the surgery, so my diet will have to change somewhat. None of it sound pleasant, but it’s what needs to happen. See attached image for how much of my digestive tract (Section ‘B’) will be rendered.
The wait is difficult. Rip off the bandage? No, mummy, we’ll spin this duct tape off you for the next 8 weeks. Slowly. Still, there are parts of me that are at their functional peak until a couple of months from now. Any heavy lifting I want to do this summer needs to happen soon.
About 10 years ago, I had a fungal infection on my big toe. The doc took off the entire nail. ‘I can put a chemical on the nail bed – So the nail won’t grow back.’ Then, I thought giving up on a big toenail at 40 was drastic. ‘The fungus is just going to come back’. I let the nail grow back. Doc was right - That toe is the ugliest visible part of my body.
It’s a vast distance between ‘big toenail/fungal infection’ to ‘most of your rectum/cancer’. Hard not to feel like parts are coming off this bus. Still, rolling.
~Ed