Songs From The Scanners


One of the fun aspects of being a cancer adventurer is the long arc of follow-up scans, as the oncologists perform their sworn duty of looking for the return of the bad monkeys. They take this very seriously, and sometimes seem so sure that these bad monkeys will return, that in turn you start believing it too. That’s not a good thing. Like anything else in life, you tend to attract what you focus on; worrying about bad monkeys returning is almost like flashing a neon sign that says “Bad Monkeys, enter here!”
But it is hard not to feel that worry and fear, the “scan-xiety”, when you do these check ups, as that is the reason to just being there, being shuttled into a machine and x-rayed or probed with magnetic imaging. There is no way to pretend they are not looking for trouble – that is exactly what they are doing! The trick is to develop a mental attitude of, “You can look all you want but you won’t find any more bad monkeys!” and BELIEVE it.
Yesterday, I went to the Cancer Clinic and spent a merry day exploring different machines and technology. First I had a Crazy Talk scan (that would be a CT scan in medical lingo) of my chest, as once upon a time I had a stroke and the CT scan for that showed a little something, possibly a bad monkey, lurking in one of my lungs. They don’t know a lot about my cancer, but there is some thought that the lungs are a place the bad monkeys may migrate to, so they like to zap my chest with radiation to make sure I don’t have any abnormalities that may be caused by something like being zapped by radiation, in which case I’d need even more radiation to fix that. Crazy talk.
The CT scan is rather simple and somewhat amusing. You lay on a flat surface that can be remotely moved to slide into a round opening in a large cylinder and the x-ray camera spins rapidly around your entire body, creating an in-depth image of your insides, where you may have stored long-lost treasure. Or where bad monkeys may be hiding, feasting on some of that treasure.
There is a Pac-Man like face that lights up on the outside of the cylinder, to tell you when to breathe or when to hold your breath. A recorded voice also tells you, to make it easier for you to do your part. Fortunately, this voice is mainly benevolent and doesn’t say “Breathe in, hold your breath.” and then not say “Breathe!” until an hour later. I am always so eager to please, I’d probably be holding my breath still, if it chose not to give me permission to breathe again.
The CT scan was fairly quick, then it was time to get back into my street clothes and go to another floor and see if I had learned how to better tie a hospital gown at the back.
The Monkey Residual Inspection machine, or MRI in medical speak, is very similar to the CT machine, except this one uses powerful magnets to create an image of all those hidden treasures. That’s the simple version – it is a bit more complicated than that, having to do with messing with your atoms to create a detailed drawing of what you looked like before they started messing with your atoms.
I am fortunate, if one can use that word, that my original tumour was in my leg. This means only my lower half is slid into the tube of the MRI machine. My late partner had cancer in her face – she had to endure having her head in the centre of that small space.
It is LOUD too. I’m not sure exactly why. Something to do with the magnets changing frequency, although I suspect that it is a way for Siemens, the company that built the MRI machine the Cancer Clinic has, to increase their hearing aid business. They make those too, and I think if I have to endure many more of these scans I will need one.
They give you earplugs to lessen the noise, and then headphones over those so you can hear the technician, who hides in a safe little room like they do in all these scanning places. The problem is, the direct line to the technician picks up all the machine noise, and thus brings it right INTO your ear through the headphones! I had to move the headphones aside, close enough so I could still hear her, but not so close that the noise was deafening me. I told her about that afterwards and she seemed surprised. I guess no one has complained about that before?
The noise from an MRI machine sounds a bit like the greatest hits from an Industrial band. I liked some of the beats. Some were just out-and-out discordant though. I was pretty glad to get to the end of the album.
They say MRIs are relatively safe, provided you are not part cyborg or full of shrapnel from the war. Because this is a powerful magnet, apparently it has a knack of drawing these otherwise embedded metals out of your body to it, no matter what vital organs may be in the way. I made sure I removed my precious metals before the procedure.
But what unnerved me was the actual magnetic fields in my body changing. I could feel the powerful currents in my lower half. At one point it felt like my leg was actually being moved by the current, even though they had tied my feet together – oh good! bondage! – and placed a contraption over my legs to hold them still – aww, that kind of bondage doesn’t work for me.
We are energetic beings. Our bodies use our electrical current to operate all the bits and pieces properly. I could tell having an MRI messed my current up severely. I felt somewhat nauseous and headachey after, I tasted metal in my mouth, and my whole being felt out of balance. Last time I had one of these monkey searches done I never did “reset” myself, but yesterday I did what I had learned as “brushing” my energy, to try to get it all moving in the right direction again. Still, I have booked a Reiki session because I can feel my whole body is now out of whack in an energetic way.
Of course, it is hard to quantify reactions like this, so the medical people tend to dismiss them as not being real, but it sure felt real to me. When you tune in to your own fields and body more mindfully you do notice what changes when you do scans like this. One thing I noticed was when I closed my eyes I could see violet light getting smaller or leaving in waves outward. That is a reversed direction to what I have seen in a Reiki or other healing sessions. I tried to will the energy the other way but all I could do was slow it down. It felt like I was LOSING energy while I was in the MRI scanner.
The good news was that no bad monkeys were found in my leg, the site of the original tumour. I could have told them that. Maybe next time I will.
It’s a hard call to make – do you let them keep looking with their infernal machines, their bad monkey finding machines, their bad monkey attracting machines, or do you take a chance and decide you no longer need to have a cancer adventure? Sometimes, perhaps that is all you may need as the biggest step to health – a firm belief that you are healthy. It is very, very hard to believe that with your entire mind, spirit, and body though. The images of bad monkeys cannot be easily shaken from your memory.
It is a memory full of enough fear to make a person lay in a large tube and listen to harsh Industrial tunes and have your natural waves messed around with. The fear of bad monkeys never really goes away, once you have encountered them in this life.

monkey afraid

There’s a New Leg Order!


All my life my right side has taken charge.
Need to write something? “I’ll do that!” says Righty!
Swinging a hammer? “I’ll do that!” says Righty!
Kicking a ball? “I’ll do that!” says Righty!

Whether it is doing things with my hands or my feet, my right side has always been the stronger of the two. The disparity has been so great that at times I would stop Righty from automatically taking the lead, and tell Lefty to try. This would always end in tears. Lefty would whine and complain and when forced to try anyway, would perform awkwardly and weakly, leading to anguished wailing, “See? I told you I can’t do it! I suck!”

And I would have liked to reassure Lefty that she didn’t really suck, but… yeahhh, well she kind of did. Usually all I could say was, “good try, kid!” and hand the ball back to Righty who smirked like an older sibling who knew that mom loved her best.

But now it is Righty who is the weak one, at least in the legs. I am now missing half my main calf muscle complex in that leg, and as I am healing up and using the leg more, I can tell that my right leg is now the weakling, considerably so.

I have to give Lefty credit. She could have been lording this over Righty, but instead she’s been a good sister and seems to just want to help out as much as she can. Barely a smirk seen.

It’s still hard on Righty though, such a blow to her pride and identity. She keeps trying to prove she can do what she used to, that the leader’s job is NOT up for grabs. Righty will try and take the first step up a stair still, or lead in a pivoting turn, but then the lack of strength will nearly topple us completely and Lefty will quietly move in front saying “It’s ok. I got this.” I think that just makes Righty more angry.

So now Righty wants us to get to the gym, the pool, into physio. Whatever it will take to reclaim her… uh… righteous… space of being. And she may very well. And Lefty will quietly shuffle back and all will be as it once was.

Unless this little exercise in leading gives Lefty thoughts:
Left behind no more!

(and I didn’t mention monkeys once!!)
Oh, here they are….

One_Leg

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

There are almost certainly monkeys, somewhere. Yeah, no.


I have been remiss in my monkey scribing duties, and I apologize to those who enjoy reading about those monkeys and to the monkeys themselves for being ignored.

The truth is there is a part of me that wants to move on from my bad monkeys and forget they ever existed. And yet, that would be rude. And when one is rude to a monkey, a monkey will always find a way to top you in rudeness. And I definitely do not want that! A happy monkey is a quiet monkey and if the bad monkeys of low grade fibromyxoid sarcomic leanings want to have a fuss made over them, then it is folly to refuse them!

My oncological surgeon thinks the same way it seems.

I received the good news a couple of weeks ago that there was no evidence of ANY monkeys in the muscle and other good bits of me they carved away a month ago. No bad monkeys lurking in the shadows. No bad monkeys hiding in little holes in the ground, hoping the troops would wander away so they could leap out and continue their reign of terror.

Like I suspected, the bad monkeys had all been huddled around a card table, intent on their own plans for mischief when the surgeon’s first strike of the scalpel took them out without them even knowing what hit them.

However… the surgeon…, he’s one of those guys who sees a shadow in every silver lining. It’s probably the nature of his job. Either that or he wants to gain some kind of glory for himself as these kind of monkeys are very very rare and a coup to a doctor like himself. He could make me the subject for a fascinating study on the rarely seen bad monkeys of the fibromyxoid jungle.

So when I saw my family doctor to show him how well my REALLY LONG incision is healing up, he offered to print me out the documents of my surgery, including a letter from the surgeon, in which he stated the good news that the biopsy came back clean BUT…. “there is almost certainly microscopic disease, somewhere.”

That line… those words… they threw me for a tailspin. My family doctor did concur that there was no evidence for the surgeon to say that which helped a bit. But what it left me with immediately was, “I am f**ked. These bad monkeys will come back and trash my temple yet! It’s only a matter of time! How much time? Days? Months? Years? How will it end? Will they slowly break me apart piece by piece? Will they rip my head off and cast it outside into the damp darkness of the jungle?”

That sent me back into a long low depression which is one reason I didn’t feel like writing here. I didn’t feel like anything actually. But I’m fighting back. Because, after research online and talking to others, my doctor is right… the surgeon can’t really say that.

Or rather… he can. In fact we ALL have microscopic evidence of disease, somewhere. It’s how our bodies work. It’s like… we all have a monkey or two wandering our temples. What matters is how we maintain our temples, how much power we give to these monkeys.

So maybe that’s the real reason I didn’t want to post here. I don’t want to glorify these monkeys anymore.

Only… I know I can help others by talking about this. I know I can help myself by talking about this. And I know that monkeys need to be watched and that taking the mickey out of a monkey, so to speak, is sometimes the best way to keeping them in line.

So now begins the “we’re watching you, monkeys!” phase of this particular adventure.

And that I can write more about in the future.

Because we ARE watching you now, bad monkeys!!!

The Hunt For Bad Monkeys Part 2


The Surgical Observation Ward.

After my surgery, while coming to what senses I have in the recovery room, I was informed that I would not in fact being going up to the private room I had requested, but instead would be staying overnight in a multi-bed ward called the Surgical Observation Unit or something like that. They told me that is was for “staffing reasons”.

What I have come to realize since, partly from research online, was that this is where “high risk” post operative patients are placed so they can get a better level of nursing care. In case, you know, you start bleeding, or go into convulsions, or the surgeon’s watch starts beeping inside your leg. Things like that.

At first I was miffed. Housed with commoners? How dare they! And with members of the opposite sex? Too horrid to even think about!

But I was very grateful in the end to have spent the night in that ward because the care I received was first class. There weren’t too many of us I don’t think. I actually spent the night thinking the room was much smaller than it turned out to be. The next morning when I hobbled over to the bathroom on my own, I saw that it was an L shaped ward, with more beds, full, on the other side of the nurses’ station.

I wasn’t even sure how many I shared my side of the room with. I knew there was no one right across from me, and I suppose that was a concession to my royal status, and the person next to me was very quiet, but kitty corner there was a man who had apparently had a knee operation, and who was dealing with a lot more pain and issues than I was. I forgave him for keeping me awake half the night with his moans and his being sick and calling for nurses. He seemed almost embarrassed to be troubling anyone. He would explain that his pain level was a 7 or 8 (these arbitrary numbers we are asked to make up to convey pain – they gave me a sheet weeks before the operation with face diagrams to suggest the count level, 10 being your face scrunched up like you like just ate something very bad). And then he would apologize for being in such pain. It was hard to be mad at him, although he was mainly responsible for me not sleeping more than an hour at a time all night.

The other thing also responsible for a restless sleep was that, after smugly thinking to myself I did not have to pee when this man was having so many issues with it himself, I ended up having to pee about 3 or 4 times through the night. It was the water and apple juice diet I was on.

I hadn’t eaten in about 20 hours but I didn’t feel very hungry, so I did not rise up in rage when the nurse informed me that she had sent my dinner away earlier. But I was very thirsty and apple juice also meant sugar so I kept asking for that. The first time the nurse came by to ask me if I needed to pee I said, smugly, “no! I’m good.” But she wanted to play with the ultrasound machine they use to see how much liquid is in your bladder and I decided to let her, more out of curiosity than anything.

As she placed it over me she asked me if I had ever had a hysterectomy or had any other issues with my womb or uterus. I looked at her and (major reveal for some of you here?) said, “Ummm… actualllly… I never HAD those parts. I’m transgender.” She didn’t miss a beat. Just smiled and said “Oh, ok!” and told me my bladder was 14% full. See I knew it!

But later it was more than 14% full, and when I buzzed the magic button (gotta get one of those for home) the nurse asked if I wanted to get to the bathroom, use the commode or a bed pan. Getting out of bed was NOT an option for me at that point. And I was hooked up to an IV, a pulse thingy on my finger (note to fellow patients – when you move the hand those monitors are attached to, a machine will beep LOUDLY and wake others up! DO NOT move that hand!), and the oxygen thingies stuck in my nostrils. So the bed pan seemed the best option.

It’s awkward. I had to use my sore leg a bit to push myself up off the bed enough but that was a good excuse for a new painkiller. I got into a rhythm eventually. Buzz nurse, lift butt, pee, buzz nurse, she brings painkiller and takes away pee and happy me!

Until I got the male nurse.

He seemed annoyed. He thrust the bed pan at me and started to walk away.
“Uh.” I said, “Um, the other nurse puts down one of those blue cloths underneath the pan first.”
“Why?”
“Because… uh… it gets a bit messy?”
I could just see his mind think “girls!”
I don’t know. I suppose it would have been easier if I hadn’t had the operation a couple of years ago. I mean, guys can pee into a bottle for goodness sakes. I could have tried that, but at least half of it would be outside the bottle too.

The night passed with me drifting in and out of sleep. I had brought a TON of stuff with me in my over packed bag. I had imagined lounging, post surgery, in my own little room, perhaps even with a tv, dressed in my pj’s and slippers, munching on chocolates, sipping juice, reading different books. In fact the only things I got from my bag all night was my new teddy bear, bought just to protect me on this mission, and a couple of chunks of chocolate bar when I felt hungry late at night.

I did try to read but really all I wanted to do was sleep. And pee.

In the morning, bright and early, I was woken by a cheery new person, who brightly told me she was from the lab and was here to take blood! I’m not sure why they wanted blood. Maybe they just collect it. Or perhaps it’s how they make sure they look busy. “I know. I’ll go up with my cart and collect samples from people who can’t run away!”

Shortly after she left, breakfast came. I had woken dreaming of coffee and bacon, a sure sign one is well on the road to recovery!
And here it was! Two thing strips of desiccated bacon, a little mound of re-constituted scrambled eggs, some cream of wheat, weak coffee and soggy toast. It was the most delicious breakfast I have ever had!

I ate all of it.

The poor guy across from me looked through the crack in his curtain and looked like he was going to be sick.

Then I had to pee again!
This time, because I knew they were planning to kick me out that morning, and truly I would not want to spend another sleepless night there, I went for the commode which would at least get me out of bed. I knew that when I stood for the first time the blood would rush to my legs and arrrrrrgh!
So pee. And pills.

The assistant surgeon came to see how I was doing. I had met her before the surgery and figured she was pretty behind that mask but the next morning I saw she was downright glamorous! What’s with these surgeons? It’s like being operated on by supermodels.

She checked my leg and re-iterated that everything went really well from their standpoint, and then tested to see how much feeling I had in my foot. When she got to my little toe and the outside of my foot she was surprised when I said I could still feel it.
“You shouldn’t be able to. I thought we severed that nerve.”
“I thought so too, and it is a little numb, but I can still feel something.”
“You shouldn’t be able to. Strange.”

Yes, I am strange. It’s as simple as that.

But I am very pleased the numbness in my foot is about the same as it was after the original tumour removal, when they moved the nerve but did not severe it. Perhaps my body was already building a new pathway or using another one?

The physiotherapist on the floor was showing patients with new hips, knees, whatever, the beginning steps of a long and difficult regime to recovery and I asked to see him before I left. He showed me how to use my crutches properly and helped me practice on stairs that were very steep and very narrow. I briefly wondered if he was thinking about making a new client for himself, so was careful not to turn my back on him.

And then, before I left the hospital, I had one last pee! This time I crutched it over to the washroom all on my own and felt sorry for all the bodies in the beds, still attached to IV lines and such, and moaning and pressing their nurse buttons.

And then I remembered them from before.
We all shared that waiting room a day earlier. Some of us were alone, looking nervous and unsure of what to do with ourselves. Some of us were with family or friends, and I would look for the wrist bracelet to see which one was walking through those doors with me.

We seemed independent and healthy enough. You could detect slight limps. You certainly could feel the nervousness. We were the chosen ones.

We would all walk through that door on our own feet, possessions in hand, fully dressed, as on an otherwise ordinary day. We would exit that area on our backs, in flimsy hospital gowns, our possessions taken from us, tubes and things stuck in us, totally helpless…. all of us lain low by the surgical team that waited for each and every one of us. Then we would listen to each other moan and groan and cough through the night, absolutely dependent on the nurses, helpless and wounded warriors of the world.

I hope they are all out of there by now and working towards their own healing and recovery. I hope they are doing as well as I am doing now.

My new guardian bear who watched over me all night long. He's so awesome! And soft!

My new guardian bear who watched over me all night long. He’s so awesome! And soft!

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.

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

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.