The Search For Hidden Monkeys


Now that my insurgent tribe of bad monkeys has been, literally, taken out, along with their whole neighbourhood (sorry about that folks!), I have my oncologist team chomping at the bit wanting to do a thorough search for any monkeys who may be hiding elsewhere in my body, or perhaps who escaped the initial search and remove, and will come back in the same area to attempt to resurrect the rebellion. I think they call that “returning to the scene of the crime”. Or local recurrence, in boring medical speak.

So my surgical oncologist has scheduled me for the first of my follow-up scans in June; an MRI of the battlefield area to check for any monkey stupid or brazen enough to pop his head up from that shattered place, and a scan of my chest, because apparently the chest area is like an irresistible tavern of plenty for monkeys looking for trouble.

My oncologist wanted me to do a CT scan of my chest. I did one back in January that showed all quiet on the breastren front (ok, I know that was bad). I intend to keep it that way! But I do understand the need to check once in a while, because bad monkeys can be sneaky monkeys and start a party in a once quiet neighbourhood. It’s best to shut those down before it gets out of hand.

Okay, so my monkeys have morphed from insurgents to partiers. I guess the motivations are different, but the results are still the same – chaos, anarchy, and a mess.

At any rate, that they must be watched is the consensus, but I do have an issue with the call for a CT scan of my chest this soon after the last one. I have heard that a CT scan can expose you to up to 400 times more radiation than a simple film scan. My GP heard my concerns about that and shook his head and said “No. Not at all. More like 75 times.” as if that made it ok.

I did some of my own research and found this cool little site that may or may not be accurate, like the rest of the web world. But it does reaffirm what I have been told as far as radiation comparisons.

Well, seeing as radiation is like bananas to monkeys… it made little sense for me to expose myself to that amount of radiation once a year for ten years. My GP did agree that seemed excessive for the very remote chance, as described by my oncologist and what little literature there is on Low Grade Fibromyxoid Sarcoma, that this could metastasize in my lungs. Even my surgeon had agreed, right before surgery, to do a film scan this time instead of a CT scan, but I had to email his assistant after and get a scheduled CT scan changed to a film x-ray, as per our last-minute before surgery agreement (he was probably hoping I wouldn’t remember that deal, what with all the drugs and all).

And then I got another reminder to have a CT scan. Now I know that a CT scan will show them more, but this is kind of like asking for trouble in my opinion. It’s like driving a truck load of bananas to my nice quiet neighbourhood and shouting aloud “I sure hope there are no bad monkeys around here!!!” If there is a monkey or two still lurking, one could imagine their ears perking up and noses sniffing the air, and soon they will be looking for where we stashed those bananas. And then it’s party time in my lungs!

So I will have to resist my oncologist’s enthusiasm to find new monkeys. I think because this cancer is so rare and not well documented, there is a temptation for him to make a splash in his field. I know it’s not about ego, entirely, but about helping others, but me being dead sooner because of over zealousness in the radiation department isn’t going to help me. Sometimes just saying no is what a girl has to do!

If my oncologist could, I suspect he’d shrink himself like in the movie The Fantastic Voyage, and enter my body in his little craft, seeking and destroying bad monkeys. I’m not sure I would trust him though. Being a surgeon, he seems to like rearranging bits and pieces (that’s a post for another time), so I’d be worried he might use the little laser guns or whatever he has on his tiny ship, to rearrange my insides. Which may be beneficial, and in fact just what I need – lord knows they must be kind of messed up with 5 decades of careless living – but I’d rather be able to keep my oncologist where I can see him and keep an eye on what he is doing.

It’s easy for them – in fact he used that term, when I asked him during the primary tumour removal surgery if he would take out a wider margin too, and he replied it wasn’t prudent if we didn’t know it was malignant, and it would be “easy” for him to go back in later and do a wider margin, to which I replied “Sure. Easy for YOU!” – but at the end of the day, they go home or go golfing or working on their shrinking formulas or whatever they do…. and I go home with MY body. I can’t leave my body, no matter how many substances I abuse, or how much I transcend. I am kind of stuck in it, so I’d like to make sure that I don’t just let people come in and tromp around and leave their mess. I’m the one who has to live with the mess.

But I know bad monkeys can leave a bigger mess and cause more damage, if they are allowed to run rampant (and they LIKE to run rampant!), so I do need to do my best to make informed decisions about how often and how thoroughly we go looking for those monkeys. It can be very tricky to know what to do, so I often listen to my inner voice and this time it is telling me… do not bring truck loads of nice ripe bananas to your lungs. Monkeys are sure to follow.

hiding-monkey

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.

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.”

original_misc-monkeys-taking-clothes-of-the-top-of-a-ladies-car-and-climbing-all-over-the-car

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.