My Doctor, The Mechanic.

I can’t help feel that my experience with western medicine in finding out I have Low-Grade Fibromyxoid Sarcoma feels similar to when I take my car into a mechanic to have a “weird thing” looked at.

My leg had a bump, like my car may have a thumpy noise or a periodic clunk. I try to ignore these problems at first; denial is always the best policy early on as occasionally the worry just goes away on its own and then one need only make the appropriate sacrifices to the Gods to thank Them for removing that stress. But usually the problem lingers and finally I have to admit the worry has gotten to me and I go to an “expert” to be told what is wrong with me, or my car.

And just like the mechanic, the doctor tells me some possibilities it could be, usually dropping in a doozy in the middle of more benign suspicions. “If you are unlucky it could mean I will have to chop your leg off/remove your entire engine, and just hope for the best. But I’m sure it’s not that. Don’t worry.”

So I leave with a measure of fear now in my heart. I vow to make new sacrifices to the Gods, promise to be a better person, to take care of myself, or my car better from now on! Please let this be nothing big.

And then comes the call. They have taken a look and they saw something not so great. Better come in and see us.
When I arrive, they look at me with great concern in their faces. “You have cancer/ Your car needs an expensive repair.” And the news hits me right in the gut. This can’t be happening! I can’t afford this! No no no no! And I look at the concerned mechanic/doctor and wonder… was there REALLY something wrong? Did they go looking for trouble because that is how they make a living, that is what they do with their day, look for trouble to fix?

So I go home and get on the internet and try to find out if this possibly could be the simplest and only way. How did they get to this place of dire consequence?  And at the end of the day, I just don’t know enough to say for sure they are right or wrong, so I decide they MUST have my best interests at heart and I grimly nod and tell them to go ahead, preparing myself for the shock to my bank account or my body.

I just hope I don’t wake from my surgery and hear my doctor tell me that while they were in there they found out my water pump is shot, and my bearings are going and I will need a lot more work. Sometimes you just have to say no thanks, and drive on out of there and hope for the best.


I’m sure it’s nothing to worry abou… oh oh.

I first noticed the uprising in early 2013, when sitting at my partner’s bedside in ER, I absent-mindedly rubbed the back of my right leg. There seemed to be a rather small, hard, somewhat mobile lump between my skin and my calf muscle.

“Huh,” thought I, “never noticed that before. Wouldn’t that suck if that was, like, a tumour? Guess I should check it out just in case.”

It wasn’t painful, although slightly tender if I pressed hard against it, and didn’t seem to change in size over time. And to feel it I had to have my leg at a certain angle, so the calf muscle itself pushed it up towards the skin. Obviously nothing to worry about. In the good old days, I would have just said, “Oh, I’ve got this silly little bump in my leg,” and welcomed it to the family and we would all have lived merrily on for years and years. Until, perhaps, one night it went berserk and killed us all. But perhaps it wouldn’t. Maybe it would feel at home and know it had found a safe  place in the world where it could just be a bump and not have any expectations of more for it.

But this is the 21st century. The century of toxins and human hazards. The age of 1 in 3 in their lifetimes, soon to be 1 in 2. (This is where everyone looks around the room, does the math, and feels for the other people because they will be the one, not you.)

So I piggybacked on the end of one of my partner’s appointments and as we were going out the door, said, “Hey doc, I just noticed this little bump on my leg. Right here. Do you think it’s anything to be concerned about?”

“Hmmm. (doctor’s always sound more expert when they go “hmmm” before giving their opinion)  Well, it wouldn’t hurt to check it out. I’m sure it’s nothing, but let’s arrange an ultrasound anyway.”

So off I went a week later to have my “nothing” looked over with ultrasound. I was a bit suspicious because of how quickly they got me in. Did the doctor suspect something he wasn’t telling me? Still, it HAD to be nothing because with everything my partner was going through with her recurrence and me being her only caregiver, there was no chance I was going down. The Gods would not be so cruel.

The ultrasound results came back and the doctor called me into his office. I expected to hear “Yes, it was nothing at all. Just a fatty lump. Just a bit of bacon fat floating around. You really shouldn’t be eating that.” Or something like that.

What he said, instead, was, “The ultrasound did not tell us what it is. It told us what it is not. It is not the usual benign things, like a fatty (bacon) bump, or muscle, or anything jolly like that. So now we need to do an MRI and that will tell us more.”

“Okayyyy…” Not the news I wanted to hear. But I just took it to mean the adventure would continue and I would get the ferry fare, which currently is the equivalent of the cost of a diamond tiara, paid for as I needed to travel into the big city where they have these high falutin MRI machine thingies.

The big city hospital called to book the MRI right away. I mean, they CALLED right away. The actual appointment was booked for January, 2014. This was back in March of 2013. They explained to me that they were actually booking for May, 2014, but my doctor had asked for a rush on it, so they could fit me in in just 9 months! I thought this sounded fine. Well, I thought it was ridiculous, actually, but I was in no hurry. Nothing to worry about. Just getting it checked out. Next year was fine.

The next time I saw my doctor he asked about the MRI and I cheerfully told him I was having it done… next year. He was not a happy doctor. He referred me to another hospital, in another part of the big city, and I was off to see them in August of 2013.

The MRI results came back and my doctor called me into his office. I was by now curious as to what this little bump  that didn’t bother me at all, and kept a very low profile, was. The doctor told me the MRI had ruled out a bunch of benign things; cysts, swellings, lost peas, etc. There was no diagnosis still, and then he told me the words which made my heart sink and my head spin.

“They want the soft tissue oncologists at the Cancer Agency to look at it.”

“They think it may be cancer?”

“Not necessarily. We are trying to rule that out here, and they can’t tell what it is from the MRI so they want another look. That’s all.”

Soon, sooner than I expected, always a bad sign, I got a call from the Cancer Agency. I had a biopsy scheduled at ANOTHER hospital in the big city (they have a lot of hospitals there – I suppose city people are always hurting themselves or something). At this point I was getting worried. This was “just” a little lump. I had to search to find it sometimes. It wasn’t growing, it wasn’t hurting, it was just hanging our peacefully. It certainly didn’t seem like a troublemaker.

It was strange to be assigned a soft tissue surgical oncologist and never actually meet him before having a core needle biopsy done, but that is how it happened. I was leery. I had seen what the medical profession does with things like cancer. I don’t exactly trust doctors, not like some people do. They are human and they have one particular way of seeing things, usually. And the Cancer Agency tends to be tumour myopic. You walk into the door and they greet you “Well hello, Ms. Leg Tumour! How are you feeling? Well, today we are going to slash/burn/poison your tumour and then we’ll go looking for more tumours we can use our cool new devices on. I’m sure we’ll find some. These tumours are the enemy and we are here to DESTROY THEM ALL!!!!!”

So, with a healthy degree of skepticism, and KNOWING I do NOT have cancer, I went in and had the core needle biopsy done. It didn’t take too long and was a bit unnerving as they had trouble keeping my little bump still enough to get samples. I don’t blame the little guy for darting out of the way as they tried to pull cylinders of tissue from it. I was hoping the bump wouldn’t get mad at me for doing this and exact some horrific revenge later.

My brother, who had accompanied me to the big city hospital, told me later he had been admiring how strong and confident I looked in going in, and was dismayed at how weak and wobbly I looked coming out. He had no idea how weak and wobbly I would become. We still don’t.

It took a few weeks before I finally heard back about the biopsy. I even spent an entire day traveling to the big city and meeting the mysterious surgical oncologist who had ordered the biopsy only to find out he still hadn’t received the results then.

That was the day it started to become too real.

When you are admitted to the Cancer Agency as a patient they practically grab you and hustle you into their eager arms. It’s a well oiled machine, as busy as an airport terminal some days, and before you can catch your breath you are on the assembly line. You are theirs.

I rebelled against that feeling. I was sure it wasn’t cancer. My doctor seemed sure it wasn’t. I was NOT planning on coming back to the cancer clinic so no need to fill out the long questionnaires and be weighed and measured and logged into the system. As I sat there, waiting for an hour and a half to see the surgeon, I decided that this was the Gods’ way of showing me more compassion for my partner’s own journey. I was being a given a glimpse of what it is like to be “it”. To be the one with the dreaded diagnosis. It is not a nice feeling. But I kept telling myself this was just an example. A little lesson, and it would soon be over. They would tell me it was in fact a wayward walnut that had somehow gotten into my leg and what a jolly jape that all was!

The surgeon, who did not have the biopsy results, told me he was quite certain that what I had was called a “schwanoma”, which is a collection of nerve sheathing tissue that is quite benign. And that I could choose to have it taken out or left. But let’s just wait for the final results.

My family doctor called me in a couple of days later to see the pathology report. And the verdict was…, uh, no verdict. The lab had narrowed it down to either a low-grade sarcoma called Low Grade Fibromyxoid Sarcoma, or a benign tumour called Ossifying Fibro something or rather. But then they had run out of tissue sample before they could make a final diagnosis. I imagined them going “Doh!” like Homer Simpson.

I looked both of those choices up on the internet, and knew I was going to die horribly. Both of them sounded not so great. But there really isn’t a lot of information online about them. I realized I may have something even rarer than my partner’s Adenoid Cystic Carcinoma, which is super rare itself.

The pathologist recommended “excisional biopsy”, which meant taking the whole tumour out surgically and then slicing and dicing and playing around with it until they DID have a diagnosis. By this point I was not having fun, but what’s a girl to do? Now I NEEDED to know.

I was booked in to the cancer clinic for day surgery and knocked out, and the (handsome) surgeon excised that poor little bump that was causing no one trouble – but who may have been thinking about it after having chunks rudely pulled out earlier. The surgeon once again assured me he was quite certain it would turn out benign, so I went home and limped around for 3 weeks while recovering from this seemingly massive operation.

It took almost a month to get the lab results this time, just in time for Christmas! Ironically, it was also right before Christmas that my partner was first diagnosed with her cancer back in 2006. Obviously Christmas is a bad time of year for us. Next year we should just go somewhere warm and pretend it’s not happening.

I wanted to pretend the final diagnosis was a mistake. A FINAL genetic test, very esoteric and obscure. declared that I had.. ta da!… Low Grade Fibromyxoid Sarcoma! I have cancer! Oh. Yay.

My partner and I are close like that. “You getting cancer?”

“Yeah, thought I’d see what that’s like.”

“Ok, me too.”

Maybe not the best plan, being primary caregivers to each other, but it is what it is.

Which is what I sometimes just have to fall back on. Denial is always the first stage. I asked my doctor if there was any chance the diagnosis was wrong. I knew what it meant – my surgeon had warned me IF it was not benign, but he was sure it was, then he would probably want to go back in and do a “wide resection” which meant cutting out a LOT of my calf muscle and generally just messing around in there. I went online and looked up the studies about this cancer. What I could decipher into plain English seemed to point to a very obscure gene test. Hardly reassuring and not much to go on to choose to disfigure and weaken my pretty little leg.

I thought about stopping this silly adventure right here. I don’t exactly trust these guys, like I’ve said. I’ve seen what has happened to my partner and to others who have had surgery and other treatments.

But the surgeon isn’t only handsome, (did I mention that?), he’s also very confident and reassuring and a smooth talker. He has talked me into going into the city to ANOTHER! hospital in early February and having a wide resection done. He promises me he will make my foot permanently numb, disfigure my leg, and make it harder for me to chase my little dog when she runs away. He’s one of those men my mom warned me about. And I am a girl who just can’t say no.

So my cancer journey continues. It will be a long, challenging recovery from this next, and hopefully LAST EVER!, surgery, and I will need to be followed up for many years to make sure that no further uprisings occur.

For nothing, it sure is turning out to be something.