The Hunt For Bad Monkeys Part 1

It has been a few days since I even felt like getting online, other than a couple of quick phone to Facebook updates for friends and family. I had no idea I would feel as awful as I have. It’s like someone performed major surgery on me and I have had to recover from that. Oh, right, in fact that is what has happened.

I’m not sure what I was expecting. After a lifetime of no surgeries at all, I now have had 3 in two years. It’s like a later life hobby, but frankly I really think I should find a better hobby. This one kind of sucks.

It is a long slow process to recovery and there is no way to really hurry it up. The trick is finding the right combination of rest, movement, and painkillers. I’m learning. It is getting a bit better, day by day.

To go back to the day of surgery, it started with my brother driving me bright and early through an eerie morning fog, to the main city hospital, where I had 4 rather larger vials of blood extracted from my arm. I’ve never had this done before, but apparently it gives the medical team, MY medical team, an accurate idea of the exact blood type I would need should I start bleeding all over the place during surgery. It’s not just about type, but the details too.

As much as my brother suggested my blood type should read “blue blood”, for a princess like myself, I was reminded by the intake nurse, John, that I am AB. AB+ I think he said. I knew it was one of the rare ones. Seems like I am a rare creature all around. I probably should have some endangered species protection you know. I knew that I was a rare blood type when I was a kid and the whole class found out their blood types. It was par for the course, being the only kid in the class of that type. Outside looking in. Odd duckling. All that. Par for the course.

I actually arrived for my surgery two hours early. I am never early for anything. Of all things to be early for, the surgery wasn’t a great one. They didn’t push another patient out of the queue seeing I was bright-eyed and bushy-tailed. They, rather, admonished me for being so early and told me to wait the next two hours in the stuffy and crowded waiting room. Instead I went for a walk to the university bookstore and for once in my life took my time looking at all the books!

I was starving by the time I came back to properly wait for my surgery. It had been about 13 hours since I had anything to eat so when a nice young Italian man showed up with coffee and baked goods for his aunties waiting for another family member it was difficult not to join them. Then, while they munched on delicious looking treats, the aunties started talking about their favourite recipes. I think perhaps they weren’t actually waiting for anyone to come out of surgery – they most likely got their kicks from hanging out in waiting rooms full of starving people while they ate and talked about food. They seemed to be enjoying it far too much.

Fortunately, my call up came soon and I was able to FINALLY get in to have my turn of fun. John, the nurse, greeted me jovially. That mood soon changed when, after I had dutifully cleaned and changed, he was interrupted in our intake by the surgeon himself, who was ready to go. The surgeon spoke to me a few minutes and did his best to reassure me while I did my best to annoy him (not the smartest thing) by being a difficult patient. Then the surgeon left, the unsaid message to John being “My time is way more valuable than yours so get this one in the OR immediately – we are ALL waiting for you now.”

Poor John. People kept coming by to check in on me, greet me, tell me who they were and what their job was and John was trying to race through about 15 pages of questions and information in between. And he was doing his best to not make me feel like I was being rushed to market. He did an amazing job and I only felt a little bit shaken by the rush. They wheeled me into the OR, maybe traveling a bit too fast as we almost crashed into a few things and people. We passed a few scrubbed up nurses sitting up on counters kicking their feet idly while waiting for me. I could almost see the expressions under the masks; “Oh! FINALLY! We were ready to go to lunch.”

The anesthesiologist had introduced himself to me earlier and he seemed cool and confident so I trusted him. I barely blinked when he informed me he would just set up IV in the OR and then told me I would have a tube shoved down my windpipe for air as I was going to be flipped face down once they knocked me out.

He was merrily chatting away with me while other people grabbed my other arm and someone shouted over the din who I was and what they were all about to do to me. I thought to myself, “OMG! This is chaos! I hope they…..”

And then I was awoken from a nice dream. I was moving through a hallway and people were talking. “She’s awake” were the first words I heard.

It took a moment to remember where I was. Wasn’t I supposed to be having an operation done? Oh. Oh, maybe it HAS been done? Yes. My leg feels a bit sore. I think something happened.

It’s a very strange thing, to one moment be awake and fully together physically, and the next moment be not only somewhere else but missing a chunk of yourself.

They took me into a recovery room and talked to me and gave me a sip of water and asked about my pain. It wasn’t too bad at that point. Presently the surgeon came by and said all had gone real well, he had taken out a wedge of muscle and flesh (30-50% of the muscle.. I’m not sure why he was still uncertain on the size) and that his assistant would see me in the morning. After the surgeon left I looked at the nurse and said ‘God he’s gorgeous!” and she smiled weakly and said “Yes dear. And how is that pain now?”

About an hour or so after surgery, they took me upstairs to my room. I had asked for a private room, being a spoiled princess of rarity, but they said “staffing concerns” made it more important that I be in a different room with others. It was actually the surgical observation ward, and after I got over my initial hissy fit (kept to myself other than a slight pout) about sharing the room with “commoners” I was actually very grateful for the increased care and attention in that ward.

But I shall save that for another post as this has been long enough, and I need to have a nap now. A princess needs her sleep. Especially a wounded princess.

Keep On Dancing

This upcoming resection surgery for my cancer feels like a demarcation point. I don’t want it to be, and perhaps it won’t actually be as severe and life changing as it feels to me. The surgeon has told me I “should” return to “normal activities” over time. I do feel that there is a very good chance my normal activity of laying on the couch or in bed, reading and watching tv, will not be affected too severely. It’s those other activities I worry about.

Will I be able to dance the Foxtrot after losing up to half my calf muscle? Will I be able to step dance, run a marathon, climb the pyramids, stand guard at Buckingham Palace, toss a caber, throw a shotput, race down the ice on a breakaway, streak down the sidelines, spacewalk, dance on the head of a pin, after losing an important part of my leg?

Okay, so I haven’t actually DONE any of those things (I would have raced down the ice on a breakaway but I could never skate fast enough to actually break away), but now that I am faced with an uncertain future about my leg strength I am wanting to TRY all that! Well… maybe not some of those things. Standing in front of Buckingham Palace all day sounds borrrrrring!

You know they say, or sing, “You don’t know what you have ’til it’s gone…”?
I have that feeling now about my poor right leg. I think about all the things two healthy strong legs can bring me and then I feel frantic that soon I won’t HAVE two strong legs. I will have one, and a half. Will I be able to step dance with half a leg, or will I have to settle for the stumble dance?

Make no mistake – I intend to rehab the heck out of this afterwards. My surgeon suggested I have other muscles in the general area which will rise to the fore, like heroes to the rescue, and help me do all I could do before. I’d like to believe him, but I know those muscles are probably like the rest of me. They will whine and say “Aww, gee! We have enough work to do already! Now we have to do the work of others because there’s been (literally) cut backs? That is so unfair!”

Perhaps I shall suggest to them that it was more unfair to the poor muscle that got cut back. That they are LUCKY they still have jobs and haven’t been touched yet. Motivate the workers the good old capitalist way!

I’m sure they will rise to the occasion. I have faith in my workers. I shall treat them well… most of the time… and give them lots of time off… they seem to like LOTS of time off already. I will give them gentle massages and lots of words of encouragement and loving and they will see how they are needed and this is their chance to step up and shine in life. To prove to all that they can be more than they have been.

Of course, if they succeed I may have to consider cutting back on the other leg too. It may prove I didn’t need all that muscle anyway!

You know, muscle was never my forte. When I was a kid I was so skinny if I turned sideways I would vanish. I was thinner than the model skeleton in science class. I had so little muscle strength that when a bug landed on me I’d fall over. But over the years I have developed some definition and strength. And my calf muscles are now one of my best features. They are strong and supple. And kinda sexy if I may say so. For now….

When I went looking for hints on rehabbing after calf muscle surgery I found out there is an elective surgery called Calf Reduction Surgery. People, mainly women, have the muscle and fat in their calf muscles PURPOSEFULLY reduced, because they think they have “bulky” legs.

I was flabbergasted. People CHOOSE to compromise their strength for looks?

I think I would rather have a bulky leg that can dance the pogo, leap over hurdles, run away from the cops (hey, you never know), skip to the store, twirl on a dime, jump for joy.

And I WILL still do all that stuff (if the cops are slow enough) and more! I will find the strength and the healing energy and I will keep dancing through life.

Because I AM a survivor and a thriver. Ain’t a little bit of cancer gonna slow me down.

Wiping Away Cancer!

The other day I received a phone call from a nurse at the hospital where I am having the surgery done on Feb 11th. She called to go over pre-op and post-op instructions with me. One thing they are asking me to do, which I have never been asked before, is to purchase some chlorihexadrine glutonate antiseptic wipes so I can thoroughly disinfect myself the night before surgery.

This is to help keep the risk of infection down, and it a concern taken very seriously as everyone now knows that hospitals are the easiest and deadliest place to acquire nasty little bugs that are out for revenge from years of the anti-biotic wars.

I will have to wipe myself down from shoulders to toes, in all the nooks and crannies. This may sound sexy to someone, but it just sounds painstaking to me, not to mention cold, this being February. Standing around naked while wetting down my skin with a cold, damp pad, does not sound like a lot of fun.

It’s amazing all the things I am expected to do to ready myself for surgery. I thought I’d walk in and the nurses would flitter and flock around me, like the little birds around Snow White, and I would have every need taken care of. But I have to do work! This hardly seems fair.

What’s next? Shall I give myself anaesthetic and then perform surgery on myself? Hmm, that might be tricky from an unconscious state. Perhaps I should retain the surgeon for that.

And then I shall need to recover on my own. I do get to spend one night in hospital, which seems a bit of a gamble these days, given the superbugs I mentioned above. My partner’s surgeon told her when she had her surgery that he wanted her to make every effort to NOT stay overnight at the hospital as the risk was so much higher there. Remember a time when hospitals were where you stayed to feel safe?

I asked my surgeon why he wanted me to stay overnight and he told me I might want to access the hospital’s pain-killer systems. That was disconcerting. Usually when a doctor explains that you may feel a little “discomfort” then you know it will hurt like heck! So to have the doctor actually warn me I may want pain meds that night…. gulp!

Once I get out of hospital and start recovering, I will need to do exercises and perhaps physiotherapy to regain as much leg strength as possible, I will also need to learn to look after myself better. This means better sleep, eating more organic natural foods, a better balanced lifestyle, less stress, more exercise. In short,.. a lot of work.

If I had known how much I need to do for myself I never would have gotten cancer. What a lot of work it all is!

Expect the best, prepare for the worst.

My surgery is less than a week away and I am starting to fret. I am anxious about having this “wide resection” (what an interesting word, resection: Surgical removal of all or part of an organ, tissue, or structure) of a “significant” amount of the calf muscle in my right leg, and what that may mean for me.

The goal is to rid my leg, and hopefully my body, of any hiding cancer cells who may yet live to foment rebellion another day. While my surgeon has a plan of how much muscle and tissue he will take out in an effort to round-up any strays, he also told me that if he “sees cancer” while he in there rooting around he will go after it. This is both reassuring and unsettling. It’s like asking my dog to fetch me one piece of pizza out of the pizza box. Ok, that was a weird analogy. I couldn’t think of a better one. I spent 15 minutes trying to. But I would never ask my dog to fetch me a piece of pizza. It is like asking a black hole not to swallow stars.

Okay, perhaps I should steer clear of analogies tonight.

I grilled my surgeon on his plans, like a mother asking her daughter what her plans were for a night out with friends. Wait, I said I wouldn’t do any more analogies. I may need a support group for this.

Let’s just say that my surgeon had to reassure me a lot, a task he somewhat failed at. He did assuage me enough (well, he sweet talked me with his sexy Australian accent) into going ahead with the surgery. But at the same time as he promised I would regain “normal” use of my leg, he also made it clear that things can unpredictable. The hope is my remaining muscle will compensate and allow me to do most things I can do now, although apparently my future career as an Olympic sprinter is over. Rats, I was just getting psyched for that stardom. Well, at least I will have a legit excuse. Sounds better than, oh, say, lack of ambition and talent.

It is worrisome that I won’t really know how my leg will recover and what it is I will actually lose in the end. Only time will tell. For now, I am trying to get my left leg to up its game. This has been met with some resistance. Ol’ Lefty is kind of the lazy one of my two legs, not to mention the more clumsy one. I hope she is up for the job. She really isn’t used to being the leader and the one counted on the most. So far, in practices, she tends to do her best for a few focused moments and then wander off to her more accustomed place in the background, following Righty’s lead. Well, once Righty is out for the count, we will be relying on Lefty to pick up the slack. I just hope she doesn’t just collapse and run off to eat chocolate in bed to console herself.

So, besides being apprehensive about all the fun stuff that comes with major surgery, such as being able to reel off higher numbers on the pain scale and hallucinating while on painkillers, I am also anxious about what recovery will look like long-term. What if I am left with a permanent limp?

Well, at least I have my answer ready when someone asks me what happened to my leg. I’ll look at them with solemn seriousness and say, “Monkeys. Bad monkeys.”

Me, Nervous? Nahhh.

Every time I hear the sound of that “nahhh” I think of the German man who videotaped the 2004 Boxing Day tsunami in Thailand . He and his family are on the beach, looking out over the ocean which has retreated after an earlier earthquake. In the distance they spot a white line on the horizon. The man videotaping the scene keeps repeating “what is that?” and finally his wife suggests it could be something caused by the earlier earthquake. “Nahhh!” he exclaims, as the line gets closer and bigger. It is excruciating to watch as we know it is a giant wave and the tourists wait until it is almost upon them before they start running for their lives. The terrorized children, dragged by their panicking parents probably wanted to tell their father, “Next time, listen to mama!”

Sometimes, “Nahhh” is probably not a very good response to impending events.

Am I nervous about my wide resection surgery in less than 2 weeks? Well, I was thinking I was doing ok with keeping calm and confident about things, but yesterday I had two small panic attacks for no apparent reason, and then I dreamt all night of arriving at the hospital and then hobbling home and dealing with the after effects of the surgery. So I suppose it IS bothering me more than I realize.

And it is natural to be nervous about this, just as it is natural to be upset to hear someone tell you that you have cancer. The trick is to try to not let fear and anxiety make it harder for you to go through what you need to do to recover and heal, but at the same time one must acknowledge the feelings of nervousness and fear.

So, “yahhh” I am nervous.

I think, because I recently did a very similar, but smaller, surgery when I had the tumour removed, I know better what to expect… and that is a good thing – less chance of the kind of nasty surprises my partner has had to endure after her own cancer treatments. But it also means I know all too well how hard the first few days will be after surgery – not right away because they sure give you good drugs immediately, but when my body starts healing in earnest the pain will increase. And I can expect MUCH worse this time. When my surgeon told me the reason I will be staying in hospital overnight after this surgery was because I “might want to access the pain control abilities of the hospital” I knew I was in for it. Usually doctors downplay pain, often describing what turns out to be “please kill me now” pain as “some discomfort”.

A couple of years ago I had the very first surgery of my life and it was a big one. I won’t get into details about that right now, but it was premeditated and planned and I got to see how patients who had the same surgery a week earlier were faring. And THAT had me out the door of the clinic’s residence and thinking about how far my Visa card would get me. Would people be upset if I just went off and started a new life somewhere else, running from my challenges?

I eventually went back to the clinic and did do the surgery and suffered like everyone else and got through it. And I’ll get through this too. It’s just I DO know there will be some really tough times for a while and I may have to deal with some unexpected things.

Would it have been better for “Mr. Nahhh” to have known the devastation coming? Probably. They wouldn’t have ended up running for their lives, and would have minimized their risk. But, they would have had to endure that awful event anyway.

I think I would rather be as prepared as possible for this than have it surprise me after. There may be some surprises, but I will be better able to handle those things. Although, being prepared also means finding out as much as I can beforehand and visualizing how it may go, and that can easily cascade into fear. But fear is to be walked through. And other bravados I shall keep telling myself.

And now, to further prepare, I shall practice walking up and down our stairs on crutches without tumbling into the roses. It will be far easier to practice climbing out of the rose-bush with two functioning legs.

Forewarned is forearmed. Or forelegged in my case, I suppose.

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.

My Indolent Children

Sometimes I wonder why I am not more scared of this cancer I have. It was dismaying to find out the final pathology diagnosed it as low-grade fibromyxoid sarcoma, which is described as a rare, indolent, type of cancer. But in the ensuing month since coming to grips that, no, this isn’t just a little benign bump in my leg… or wasn’t, I should say, as said bump has been surgically removed… I have felt ok with walking around and saying “I have cancer.”
Perhaps it is because I now feel like I am a member of a club growing in popularity. At the rate we are toxifying our home planet and our own bodies, soon everyone will be in the club! And I can say “Oh, I’ve been a member for years!” and tilt my nose to the sky and sniff haughtily.
And what’s more, I am special. I have such a rare form of cancer, I have trouble even finding information about it online. Most of what I read seem to be a rehashing of one particular clinical study and the little research done on FMS. Or LGFMS to be more accurate. So no commoner type of cancer for me! More haughty sniffing ensues.
One needs to know the acronym for one’s cancer. It helps speed up conversation and makes it sound more established.
“Well, my LGFMS seems to be under good control now.”
“Oh? Well you are lucky. My ACC is being a right little… monkey… now.”
“I’m sorry to hear that. Did you hear about so and so and their FMTC? They are experiencing SOB and the OS isn’t good for that.”
“Oh dear. TS.” (“That Sucks”… a common saying in the cancer world).

I am not so calm about the idea of having a huge chunk of my leg excised to remove any possible cancer cell insurgents who may be hiding in dank holes underground, waiting for just the right moment to resurrect the insurrection… but as for those insurgents themselves, well, frankly, they don’t scare me quite as much as they may have startled my oncologist surgeon.
These cells are mine after all. They are like my babies, like all the cells my body makes day after amazing day. And they take after their momma. Indolent is a word I would use to describe myself at perhaps too many points of my life. The definition of indolent is lazy, disinclined to activity.
Now, if you are going to have trouble-making cancer cells in your body, wouldn’t you rather have lazy ones?
“Hey man, we should all get together and get out there and convert more cells to our cause! We could bring this body down in no time!”
“What? Oh, yeah… we probably should. But I dunno. I’m kind of good. What about you guys? Anyone want to go foment some more unrest? You? No. Me neither. Let’s just take our time man, there’s no hurry. I’m sure we will get there one day. Just chill and relax. It’s good here.”
This is a much better cancer to have than some type A driven cancer that is so bent on world domination that it is out and about, terrifying local residents into joining the cause to topple the very body that keeps it alive. Hmm… okay… I think I see the problem with the notion of anarchy now. This is what happens when you let extremists win. Everyone loses.
But there is no telling when my lazy old sarcoma cells might just get the wrong idea in their head. The survivors, if there are any, may even be so mad at the excisional biopsy taking away their little clubhouse and comrades, that they are already motivated more and plotting revenge. So I’m giving the troops (my surgeon and his team) permission to go in and do the usual Western medicine overkill policy and root them all out. Hopefully no troublemakers will remain after that, because if I was a surviving cancer cell after this, I’d probably be so pissed that indolence will be the last thing on my mind.
Hmmm.. I seem to have gotten worried now.
Perhaps after the operation…. I should give it a codename like Operation Final Removal… perhaps I should drop pamphlets and care packages to the remaining residents of the area in the hopes that if any LGFMS survivors are hiding out, they will see how benevolent and nice the world can be and will be happy to not only return to indolence, but perhaps even decide to become somnolent.
A somnolent sarcoma cell sounds much easier to manage. Shhh… let the little cutie sleep.

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.

Why, hello there.

Welcome to my new wordpress blog, “Monkeys, Bad Monkeys”. Let me explain… please.

I’m a something year old, something or rather, from somewhere or another. Perhaps I’ll fill those details in later but for now let’s just go with that.

I’m creating this blog on WordPress because a voice told me to. Well, it was my voice actually, saying “Hey, you know what I should do? I should create a blog on WordPress to talk about my fun little journey into the world of cancer. It is such a humorous topic, I’m sure many people will love having a good laugh at my foibles.”

Yes, I have cancer. Granted, it’s “only” a low-grade sarcoma, and we seem to have caught it early, so perhaps I have been afforded the luxury of making light of it where others can’t so easily with their own journeys in cancerville.
My partner for instance, who has a slightly less rare cancer (it’s a competition between us – who has the more rare form), a persistent little carcinoma that left home but returned with all it’s baggage and has over stayed its welcome already, has much more to deal with and it is understandably harder for her to make light of her cancer.

However it has been shown that laughter is a good immune system booster, so hopefully I can make her, and others laugh a bit here. I’ll probably also make you cry at times because that’s just how one copes at times with the fear and uncertainty and feelings of loss.

The title of this blog was inspired by my partner asking me one day to come up with something funny or different she could use to answer when people, often near strangers, ask her what she “did to her eye”. She has had surgery and radiation that affected that area and was looking for some different answer for some people who really shouldn’t even be asking such questions. So I thought for a minute and suggested she just look at them very seriously and answer, “Monkeys.” And if they persist and ask something like “Monkeys? I don’t understand. What do you mean monkeys?”, she can just shake her head and mutter “Bad monkeys.”

Sometimes I think of my cancer cells as bad monkeys. They certainly surprised me, showing up as they did, and I shall talk more about how all that happened in further posts.

But for now make yourself at home and I hope you enjoy your visits to my little corner of WordPress (I should get paid every time I mention them in this post!). Just don’t get too comfortable. I don’t need any more freeloaders.

By the way, the header image (which is no longer the header image – I’m still tweaking this blog) is taken from an illustration by a German illustrator named Lothar Meggendorfer, who was well-known for his pop up books published in the mid-late 1800’s. See how cultured I am? Thanks to Google and Wiki.

This is the full illustration which had to be cropped to fit the WordPress (kaching!) header space. Now those are bad monkeys!

Lothar Meggendorfer