Murphy's Law, a Pandemic, and.. Adventure?
I’ve always been pretty open with you guys about what’s going on in our lives, especially if it’s something that impacts our work in some way.
I’ve been struggling with the update I’m about to impart, not sure how or when to post it, what to include, etc. It’s deeply personal, really ... involved? ... and might be triggering for some people. However, I also think some things need to be said.
SO, to start off, a content warning: Medical drama. As a spoiler, I’m FINE, even though this is going to sound really bad along the way.
Here we go?
So, I’ve always said that Murphy’s Law rules my life. If something can go wrong, it will - and that’s something I’ve just sort of accepted, joked about, and rolled with all my life. I tend to think that the universe seems to balance itself out, and as a result.. When bad things happen, it’ll balance out eventually.
You would think that a pandemic hitting and forcing the cancellation of my first figure skating competition in almost 25 years would be a big enough “if something wrong can happen”, right?
I mean I had worked myself out of a car accident back injury that had Drs telling me I’d never be without pain, and that I’d never walk properly again. I remember when being able to go to the mall and walk maybe 10 meters - from bench to bench, having to take a break to sit between lengths of walking - felt like a *victory*. Going from that to flying camels again... was a journey.
I came back from an on-ice concussion last ... April? May? Had to work past the actual injury, the lasting effect on spinning, and the FEAR it gave me, but I did.
And then the competition got cancelled. Don’t get me wrong, it was absolutely the right choice, but I really would have thought it would have satisfied Murphy’s Law for me.
Murphy decided to get more dramatic, and let me tell you... our pandemic experience has been a WILD ride. I’ll try to condense it down as much as possible.
In the extremely early days of the pandemic - about a month before the competition - I was having a REALLY great practice. I finally felt comfortable jumping - first time in 24 years - and was having a blast. Jump after jump after jump. Small jumps, yes, but the *fear* was gone, and that was huge for me. I felt ecstatic.
The second practice that day, something was going wrong with my left foot. There was pain, it wasn’t acting like it should, and I was worried that my boot was breaking down. My ankle was wrenching whenever I’d step into a spin on that foot. I got off the ice early, figuring I should probably rest it and see what was happening.
Things got worse, saw my dr and a podiatrist. Xrays, ultrasound, etc were done. My dr thought it was a gout flare (NO), the podiatrist thought it was a stress fracture. It was a lot of stress - IF I was going to be ready for the competition, I’d basically have to stay off my foot until the week before, and then just kind of hope for the best.
I stayed off my foot RELIGIOUSLY. I iced and used the TENS unit and babied it with everything I had. That competition was my LIFE at the moment, and I wasn’t going to miss it. I was a bit worried that I’d have a repeat of some nonsense I pulled when I was a kid - broke my landing foot the week before a competition, refused a cast until after the competition. I hobbled around on crutches at the competition, then put my skates on and did my program anyway. It was very, very stupid... but hey, I landed my axel. Right?
I didn’t know how my 40 year old body would react to such nonsense, if I was put in the position of doing it again. So, I took it as easy as possible to heal as fast as I could, and try to avoid it altogether.
Then COVID hit.
In the middle of March - when the lockdowns were just starting up - I woke up one day with a horrible pain in my lower abdomen. Sort of the right place for menstrual cramps, but this was NOT that. I ended up having to go to the ER.
(As a point of reference here: This is the moment when this whole ordeal took a VERY different turn than it would have, if I was still living in the US. I would not have gone to the ER, and our insurance absolutely would not have covered imaging if I’d even gone to my doctor over this).
It was diverticulitis. They prescribed an antibiotic and were about to send me on my way, when the doctor said something to the effect of “Actually, let’s get a scan and get a clearer view of what’s going on”. So I went for a CT scan.
We waited there for the results, which confirmed that it was diverticulitis. Additionally, they “saw something” on my pancreas. He figured there was only a very low chance of it actually being something other than noise on the scan (I forget how he put it), but referred me to another doctor for followup. He even mentioned that he wasn’t sure if he should mention it, because he didn’t want to worry me. Like it was THAT small a chance of it being anything.
I went home, took my antibiotics, and tried not to think about it.
I woke up the next morning with a bunch of pain in my injured foot, and I assumed I’d slept weird, or maybe that a cat had slept on it. Figured it would get better within a few hours... except it didn’t.
By lunch time, two of my middle toes on that foot had pulled up and back at a grotesque angle, and it was incredibly painful. I had NO idea what was going on, and it was incredibly scary.
Then the weird sensations started. Pins and needles in my hands, phantom “cold water” sensations on my arms and legs. It freaked me RIGHT out. When I googled, I learned about “Floxing” - that the antibiotic I was given has a habit of destroying tendons and causing all kinds of neurological damage.
I’d never heard of such a thing. Antibiotics are just supposed to give you the runs... eat some yogurt and you’re fine, right? Who ever heard of tendon rupture and such being a side effect of antibiotics??
So, first PSA of this post: Ciprofloxacin is the devil. I wish they’d actually given me ANY heads up that this was a possibility, that this drug has such strong warnings against it, etc.
I didn’t even get the paper warning for it - the pharmacy experience was very weird. I don’t know if they left it out on purpose (Another surface?), or just forgot it because everything was chaos with them trying to figure out how to deal with the pandemic.
At the time, I didn’t think anything of it. I’d taken all kinds of antibiotics before. Some were nasty (like when I was bitten by a feral cat a few years ago, or had necrotising fasciitis as a teen), and none had anything other than the gastrointestinal issues, so... whatever, right?
By the evening, things were so bad that I had to make a second trip to the ER. I couldn’t put ANY weight on it, things were deteriorating quicky, and I was worried about it developing into something worse. It was scary how fast it was progressing, and I was hoping they could do something - ANYTHING - to reverse the course things were taking.
I had taken 4 pills. It had only taken 2 to cause the initial damage, and I took 2 more before I found out that it was connected to the new drama happening in my foot. To this day, I wonder if things would have been much better if I’d known, and could have made the educated choice to stop as soon as the problem started, rather than taking TWICE the amount it took to cause the problem.
Between the day before, and that evening ... things had escalated at the hospital. My husband was no longer allowed to join me in the hospital, so I was alone in the exam room waiting as my body was behaving in completely messed up, terrifying new ways. I remember sitting there trying to calm myself as I suddenly felt like someone was dragging the sharp end of pins slowly from my fingertips to my wrists. It was horrifying.
They couldn’t do anything, and had never heard of this happening before. To this day, I’m blown away that medical staff apparently wasn’t educated on the possibility. The drug has a black box warning in the US, and a strong warning from Health Canada *because of* the disabling side effects... not to mention ALL THE LAWSUITS because of it!
Apparently the warning is such that the drug should only be used in dire emergencies - life and death situations.
The kicker is that they switched me to Augmentin, which cleared up the diverticulitis within a day or so. No problems. I have no idea why that wasn’t the first line prescription, and I will be angry about that for a very long time.
Anyway. Back to the concurrent imaging drama..
The doctor I’d been referred to for followup agreed that it was very unlikely to be anything, but scheduled me for a CT scan specifically for that area, so they could get a better view.
It was cancer. Extra fun? Pancreatic cancer is what killed my father.
SO I was referred to another doctor, a cancer surgeon.
He had some good news - based on my demographics and what he was able to see on the CT scan (which was apparently flawed - they’d missed the timing that would have given him a full picture), he thought there was a chance that this was a less awful form of cancer (good news), but that also he saw something on my liver, which might mean the cancer had spread. I would need an MRI.
My last MRI had not gone so well. I had had to fight my insurance company (this was when I was still in the USA) - for a YEAR to cover it. It was a bad shoulder injury. I couldn’t get approved for physiotherapy without a dx, the dr couldn’t dx it without an MRI, insurance wouldn’t cover an MRI. I still have no idea how any of that can get called “health” or “CARE” at all, much less “healthcare”. It was barbaric.
I finally threatened a lawsuit, as I was losing my ability to work. They agreed to the MRI, and it took 3 weeks for me to get an appointment.
... and the day of the appointment, I had a stuffed nose and stuffed ear. My ears are my biggest sensory achilles heel, and basically the one big difference between people having no idea I’m autistic, and there being NO doubt at all. When I have an ear infection... the veracity of my dx is never called into question. It’s ... hell.
SO they laid me down, strapped me in, padded up around my shoulder and neck and sent me in... and I promptly had a meltdown.
I was accused of lying about not being claustrophobic (I’m not claustrophobic!), and they weren’t able to get much of an image of it. Had my nose and ear not been stuffy, I would have had no problem at all. The padding and the tight space on top of the nose and ear was just an incredibly untenable situation for me.
So that whole extremely traumatic experience was fresh in mind as I had to go for this MRI. Still not claustrophobic, but was worried that the last experience had made me MRI-phobic, if that’s a thing.
They gave me a medical mask (I’d gone in with a cloth one), put the headphones on... and I started feeling anxious. Laying down made it worse, and when they strapped my arms to my side and put the big apparatus down, I knew I wasn’t going to be able to do it. I tried to bargain - they warned me that if I couldn’t get this done, I’d need a biopsy. I told them that that ABSOLUTELY sounded like a better option, yes, I’d like a biopsy.
I ended up having to disclose being autistic, which I’d been trying to avoid. Having “pass privilege” meant that all those awful articles I’d been reading about autistics being forced into DNRs over Covid ... didn’t apply to me. If they didn’t know I was autistic, my life would be given as much respect as everyone else. That was a degree of safety that I had some measure of control over... until circumstances forced me to disclose.
Note: I haven’t heard about it happening in Canada - just the UK, Europe, and USA... but I didn’t want to take any chances
Luckily, disclosing actually helped. The one tech immediately softened and was very understanding. She finally believed me that I’m not claustrophobic, and worked with me to try and figure out how to make the sensory stuff work.
I suggested taking the headset off, which helped a LOT. It wasn’t enough though, and halfway into the machine I started melting down again.
... so they let me take the mask off.
That’s what did it - I went in the machine and was perfectly calm and relaxed the whole time. Almost too relaxed - I felt like I was going to nod off, and was worried I’d miss the commands for breathing in and out. The noise of the MRI is really... hypnotic.. When you’re not having a sensory issue!
Afterward, they mentioned that they wouldn’t be able to use the machine for a couple hours, because of the mask. They weren’t trying to guilt me, but man, I felt terrible. I was also very nervous because I had no idea what kind of exposure I’d had - this was early enough that no one knew how long it hung in the air, I had no idea if the person before me had it, etc.
Anyway, this is getting long. I’m sorry.
I had to go in for my results alone. They wouldn’t let my husband in the building with me, as I went in to get what could have been my death sentence. He had to park and have me call him on speaker phone. It was ... wild.
Great news though: The thing on my liver was harmless, and he was “99.99% sure” that my cancer was the less awful type.
I filled out the forms for surgery, and was told that they didn’t have an estimate of when it would be.
The good news about the cancer was actually sort of bad news for the surgery. I wanted it (“Karen”, btw. We named it) out ASAP. Had it been the worst kind, I would have been in almost immediately. Because it was a slower kind, it could be up to 12 weeks before I’d get in for surgery.
SO I spent the next week or so getting my stuff in order. I put together a “binder of death” for my husband - account info, passwords, instructions, how to deal with my business, all kinds of things. I made a will, and I had some very awkward conversations with the friends who would be the beneficiaries.
It was a pretty dark time, but I’m a logistics person, so I wanted to make sure I wasn’t going to leave a mess for anyone.
Surgery came quicker than I thought. My surgery was on June 15 - just short of 3 months since “We thought we saw a spot on the CT, it’s probably nothing”.
Second PSA: To the Americans reading this: The horror stories you hear of Canadian health care are meant to scare you. Having a triage system means that those who are most urgent get the help fastest.
3 months from “Maybe there’s something” to being on the recovery table is not bad at all, never mind that the entire 3 months happened during the early stages of the pandemic, when EVERYTHING was chaos. It would have been even quicker if not for that - literally every stage of this was slower than normal, according to everyone. That makes sense.
The day of the surgery, I had to be dropped off at the door and wasn’t sure if I’d ever see my husband again, which was... not fun. I woke up alone and spent 5 days recovering alone - aside from the other people in the room. No visitors allowed.
You’d think by now that Murphy’s Law would be satisfied several times over, right?
When I woke up, almost half my body was completely numb.
Bra line to toes, my entire right side was.. Gone. It was incredibly disturbing.
I was told that they likely pinched a nerve during my surgery, that it wasn’t uncommon for people of my size, given the length of the surgery and the weird positioning they apparently have you in for it.
So, my being sprung from the hospital took longer than it should have, as I was supposed to be able to sit up (surprisingly difficult when you can’t feel half your butt, or any of one leg!) and walk on my own. Because I have stairs at my house, I was also required to walk up a few steps before they’d release me.
I thought I’d be in there for weeks. Luckily, on the 5th day... one of the doctors pissed me off.
A fact I’d missed out: When you’ve been “floxed” (Cipro poisoning), you can have really awful reactions to NSAIDs and Steroids. I don’t understand the mechanics of it, and I didn’t even know that was a thing... until I took a couple ibuprofen a few weeks after the Cipro.
I’d been coming along SO well, and then within hours the toes were jacked backwards again, and I was unable to walk. It was infuriating.
I don’t remember how we got on the subject - I think he was telling me to take an NSAID and I refused - but then he started questioning everything I said about the foot, acting like the floxxing was an imaginary thing, and that I was making it all up. I was MAD.
The physiotherapist was right there as this was going on, and looking horrified. He assured me that the doctor was out of line, and tried to redirect my attention to the task at hand. He said he understood if I was too upset to keep trying, we could try again tomorrow.
I channeled every bit of anger I had - at that doctor, at the doctor that prescribed the cipro, at the pharmacist that didn’t include the warning sheet, and at the whole past several months - into walking. I was in a ton of pain and my leg was NOT doing what I told it to, but somehow I managed to walk a bit.
He thought we’d try the stairs later, maybe the next day - nope. I wanted to go to the stairs RIGHT THEN so I could walk my (numb) ass right up them and get myself out of the hospital. I was SO done with everything.
I did it.
Also: The doctor that pissed me off actually came back to apologize. He said he’d looked it up and found out that I was right. Well of COURSE I was right, who could even come up with “Antibiotics destroyed the tendons in my foot”!? I’m a cookbook author, not a dystopian sci-fi author. Good lord.
I got to go home. Finally!
Going through a major surgery during a pandemic and not being allowed to see anyone you know is... not an experience I would recommend to anyone.
I went home, and the hospital arranged to have a walker sent to my house, and said a physiotherapist would call me soon to set up in house appointments to deal with the pinched nerve issue.
PSA #3: I want to put this out there: We calculated the entire cost of the whole ordeal.
First, let me do the list:
2 CT scans
2 ER visits
Several consults with surgeons
1 major surgery (distal pancreatectomy)
5 days in the hospital
28 days of blood thinner injections
A walker “rental” (it was free) for a month
6 in-home physiotherapy visits
The total came to $36. Thirty. Six. Dollars.
That was the cost of the 2 prescriptions. Everything else was covered by taxes.
(To be fair, it being during Covid made it a little cheaper - there would have been a fair amount of parking cost on top of that, if my husband had been able to accompany me to ANYTHING... or visit me!)
PSA #4: Our yearly taxes in Canada have been less than we paid in health insurance premiums and co pays in the USA... and even without this ordeal, we’ve gotten much better value for those tax dollars!
I see I’m on page 7 of a WordPerfect document already, and I’m only up to June 20 or so.
There’s so much I haven’t even addressed.
- I couldn’t bend over enough to flush the toilet myself for like a week after getting home.
- A couple weeks of absolute hell as my leg started to “Defrost” at home.
- The fact that I’ve spent most of the last 4.5 months on the couch. From preparing for a competition, to seeing being able to walk down the front steps and get into my car as being a huge victory.
- All the time I’ve spent worrying that my right achilles will rupture at any moment. I didn’t even mention the achilles, now that I think of it. The PAIN was all in the top of my left foot, but my right achilles was getting on with some serious nonsense, all kinds of weird sensations and noises. Terrifying, when “Spontaneous tendon ruptures” is a *thing* that is on the table.
- That the pinched nerve also ended up leading to a WILD case of bursitis. UGH.
- The MONTH of needles leaving my thighs black and blue.
- The act that I didn't really get a chance to eat - and report on - hospital food.
I’m sure I’m leaving a lot out. It’s been a wildly exhausting few months.
I’m almost exactly 1.5 months past my surgery as I write this. All of the numbness remaining is just surface numbness, so I can walk almost normally now.
Let me just say though... being able to feel that your back is itchy, but not being able to register when you scratch it is probably a whole level of hell by itself.
“May you forever feel the itch, but not the scratch” would make an amazing curse, I’m just saying.
No issues with the diverticulitis since the second antibiotics.
My left foot is mostly ok now. My right achilles is still throwing almost constant tantrums.
The neuropathy is completely gone. The most annoying remains of the Cipro poisoning are a high heart rate and really poor sleep, but I’m working on those. There’s got to be a way to calm that down.
The pathology on Karen confirmed it to be the slower growing cancer. The surgeon is pretty sure that it didn’t spread, and that I’ll live “another 50 years”. So. That’s good.
Overall, there’s been an AWFUL lot of crap happening, and it’s been a confusing place to be in.
On one hand, this is far more than anyone should have to endure in a small amount of time.
On the other.. I seem to be recovering from the Cipro toxicity a lot faster than most, and avoided a lot of the scarier outcomes that others have. Living on the couch SUCKS, but... wow, it’s better than what happens to a lot of people.
Also... they FOUND the cancer. Completely by accident. I could have been dead in 5 years. Yes, the surgery and nerve and everything were awful, but... yeah.
My husband has been absolutely amazing and has been taking great care of me. Aside from things like “to feel where my right butt cheek is”, I’ve wanted for nothing.
It’s sobering to think of what would have happened if we hadn’t gotten out of the US when we did. Even aside from how COVID is going down...
... I wouldn’t have gone to the ER.
... IF I’d gone to the doctor, I doubt he’d bother with a CT scan at all.. And that’s assuming that the diverticulitis didn’t calm down by the time I got in to see him.
... IF he’d asked for a CT, there’s no way the insurance would have approved it. I had to fight a year over a crippling shoulder injury, they definitely wouldn’t pay for something that cleared after 2 days on antibiotics.
.... They wouldn’t have found it. It would have continued growing until it was too late.
I moved home for many reasons, but my MENTAL health was high on the list. I was constantly stressed out by what was going on around me, and moving home definitely eased that.
Now, moving home to Canada has literally, demonstrably saved my life.
I guess that’s my final PSA of this post:
Universal healthcare and a focus on patients - not profits - means that prevention is given a much better chance here.
You can’t get help if you can’t afford to see a doctor, or if any trip to the ER starts out with a cost/risk/benefit debate.
... I would be dead in 5 years.
So. Yeah. That’s how my pandemic experience has been going, how about you guys? Any fun new experiences, skills learned, etc?