So what my specialist feared was recurrent cancer turned out to be a giant fucking enterococcus infection, which had not shown up on previous bloodwork because, well, it wasn't IN my blood (yet). No idea how one of those started INSIDE MY GODDAMN NECK, which is not an environment where enterococcus normally flourishes. There were other questions besides that remained unanswered when they discharged me yesterday morning: the specific strain of enterococcus, the sensitivities to drugs, why the previous antibiotics I received at Burnaby General seemed to do nothing, etc. But having drained my infection via a clever device called a Penrose drain - basically coiled up folded tubing of yellow plastic that they stuck under my skin, which sluiced shit out of my neck, onto my bandages, and deep into the neckline of my fave Unleash the Archers t-shirt - they've given me something fairly general, antibiotics-wise, in pill form, and sent me home, where I currently write this.
If recurrent cancer IS in the picture, that will remain to be determined with a PET Scan, which cannot be done until the area calms down. I am told that looks like December. I am to keep the area clean and bandaged, finish my course of antibiotics (enduring the full-on diarrhea that has arrived with a splash today; luckily, I was doing laundry anyhow).
The timeline looks like this: a little over three weeks ago, September 25th, I was examined by my specialist in exactly the area of concern, where my past neck dissection was done back in December 2021, where - besides my tongue - he would have expected to see recurrent cancer show its head. I told him I had had some discomfort I couldn't explain in the area - stiffness in the neck and shoulder that didn't necessarily seem to be muscular - but at the time, there was no lump. We talked about a PET Scan and some other things.
September 28th, roughly, I felt a lump in the left side of my neck. Maybe a grape? If I got the light right, it showed in a photo:
I didn't know if it was maybe a temporary thing, a briefly swollen lymph node. On the 30th, I went to Burnaby hospital, because the lump was growing and swallowing was getting a little bit painful. You can barely see it in this photo I put on Facebook, a tiny bit of swelling.
From later that day, as I was waiting to be examined, complete with neck dissection scar:
Over the course of that afternoon, they did an ultrasound that concluded nothing and put me on a course of powerful oral antibiotics. I went back on Monday, October 3rd, where they did a CT Scan that was more descriptive. There was some futzing and Googling and long calls with 811 through this time: is the lump growing, despite the antibiotics? Is this a lymphedema? What's going on? I could understand why they thought this was an infection but why would my lump grow larger? From October 4th:
I tried to keep active, having my VIFF pass; I attempted a nice night out on October 6th with Bob Hanham, seeing De Humani Corporis Fabrica (much more on which in my previous posts - I did a lot of VIFF blogging through all this mess). We went for dinner at an Italian restaurant where I found I could barely eat - chewing and swallowing were too painful, despite being on two T3s. The lump was now large enough to kind of deform me, and when I got home, I asked Erika - trying, my poor wife, to get some sleep - to feel my forehead. Where the hell is the thermometer, anyhow? It was the start of fever.
811 nurses had asked repeatedly about fever, so... it's back to the ER, where I sat all night until about 6am, when I was put on IV antibiotics and given a steroid (I do not tolerate NSAIDS, which make me swell up, something I have plenty of already, thanks). At first I thought it was the antibiotics that hit the target, but it turns out it was the steroid: the stuff massively reduced my swelling, made eating possible (the leftovers of the same meal I could barely choke down with Bob), and gave me a crazy surge of energy, so that I was running around the apartment naked, getting stuff done, when Erika got home, like she had a nude, coked-up cartoon character for a husband: amusing, concerning, and very weird. I also sweated like a motherfucker all that day and night.
The next morning, though - all of this happening while I waited to see my specialist - that afternoon - it became clear that the IV antibiotics, which is all they gave me, were NOT in themselves seeming to help. The swelling returned. The pain in swallowing returned. My energy crashed. I finally saw my specialist, who was apparently a bit irritated that I had been putting Gods before him, so to speak - he doesn't like ER doctors or other non-specialists advising his patients, because they are often wrong. He dismissed all my lesser theories: it's not a swollen salivary gland because I took your salivary glands out on that side; it's not lymphedema, because you didn't have radiation. I think it's a recurrent cancer.
I cried a bit, he consoled me, promised he would take care of me. He gave me a scrip for stronger pills to manage my pain and sent me home, where the pain in my swallowing was now very intense. This was now October 8th. I went back to the ER for a scheduled appointment again on October 9th, but told them - talking with the doctors - NOT to give me antibiotics, but, if they would, please give me a bag of IV fluids instead (something apparently best done at one of these urgent primary care centers, but they're not part of my experience yet). They obliged me, and we talked about how, yes, if you haven't been responding to these antibiotics, it probably wasn't antibiotics (something my GP said during this time, as well - she thought it was a buildup of lymph). I managed to drink a smoothie and a Boost or two that afternoon. I had stalled on getting my percoset prescription cashed in, and was still on T3s, but this was all I could manage.
October 10th, Thanksgiving, I went back to the ER to beg more fluids, and I cashed in my percoset prescription. My neck now looked like this:
Though my normal temperature runs around 36-point-five or so, at no time over the last few days had it been below as 37, and it was as high as 38.8. Finally, on Tuesday morning, October 11th, I asked Erika to call my specialists' office for me, and - I don't know what finally broke, if it was how afraid she was or the five days' worth of fever or my being on a liquid diet, but I was sent by them to VGH and PROMPTLY AND THOROUGHLY LOOKED AT. They were back on the page of infection, and I underwent my second CT Scan in a couple of weeks.
By mid-afternoon, I was on a table, screaming and writhing as two doctors cut slits in my throat and manually - with their gloved pinkies - squeezed out "loculations" (pockets of pus) inside me to drain the pus and blood from my abscess and clear any blockages. They removed about a cup of blood and pus, a sort of pink foamy discharge:
This they cultured, determining that there were three bugs growing in the goo, but the main one was an enterococcus strain (no further specific details were arrived at, but it was the weekend and maybe the lab wasn't fully staffed? I expect to hear more presently).
They also installed something called Penrose drains, a nifty folded bit of yellow plastic tubing that coils up in a wound and conducts drainage out into your bandages. These photos are from October 11th:
Having my loculations poked and pressed was the most intense pain I can recall experiencing ever, basically, or at least since that giant kidney stone of a few years ago. But though my skin was a bit itchy - I had finally abandoned all hope of shaving - the Penrose drains were not themselves uncomfortable and I felt better by that evening. There was still some swelling, but it gradually oozed out onto the bandages. The safety pins were put in place to keep the drains from slipping inside me and the redness you see here is some sort of colouration they put on my skin. This is from October 12th. By that point, I had my own room and was back on solid food, which I could swallow without discomfort.
October 15th - one drain had been removed. You can see my discharge on my bandages.
2 comments:
So happy you are out of the hospital and doing better my friend! Keep it up!
Thanks Pete!
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