No. Bad. Monkeys!!!


I have been remiss in updating the results of my latest scans done in the search for bad monkeys. There’s been some other stuff going on in my life, so I’ll just take this quiet moment to take a breath, compose myself, and scream NO BAD MONKEYS!!!!
The MRI of my leg, site of the original bad monkey uprising, shows no evidence of a return to the scene of the crime. I wouldn’t return either if someone had come in slicing and dicing like my surgeon did. Still, one worries. Well, I suspect the one that worries most is actually my surgical oncologist. I’m pretty sure those monkeys won’t be back, especially not there.
The other scan was a CT scan of my chest, because it is thought that the bad monkeys are attracted to the open caverns of the lungs. Not sure why. Maybe there is more space to swing from things and fling poo and such. At any rate, above mentioned surgical oncologist keeps wanting to scan my chest in case any of the bad monkeys try setting up shop there. And there was some concern as a CT scan I had done last spring for a completely unrelated thing (I decided to have a stroke because life just wasn’t interesting enough with only cancer) showed a small “nodule” at the apex of one of my lungs.
Well, the report of the CT scan of my chest showed NO BAD MONKEYS! there either! As my god-daughter would say, booyah!
Having repeated scans can produce a lot of anxiety – scanxiety some call it. But when they come back clear it really helps one look forward and feel confident. This has given me a spring in my step, even in the surgically altered leg, as I head towards spring.
No bad monkeys is good monkeys.

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

The Haunting of Bad Monkeys.


All through the month of December, I had a persistent little cough interjecting itself into my days. My first thought was that the wee bugs of winter were trying to sneak into my temple, a thought that horrified me as I had a couple of much-anticipated fun weekends planned and wouldn’t that just be like the cruel gods, to bring me to my knees and make me watch helplessly as those long-awaited weekends passed and turned to dust while I hacked and coughed and wheezed.

So I intensified the rituals of warding; gobbling Echinacea, vitamins, and drops of throat searing oregano oil. And it seemed to work. I was able to lurch from one debauched weekend to another, although after each my temple was littered with trash and debris that would take several days of diligent work to clean up, to be ready for the next party.

But the little cough, the shortness of breath, was constant through all this. That it didn’t get worse, even when I allowed my armies of immune system soldiers and workers to get so besotted they had to have thrown down their weapons and tools and danced drunken reels and jigs, made me wonder why the wee bugs of winter hadn’t taken over in those moments. And then the horrifying thought that always lurks in the background came forth – perhaps the cough wasn’t from the wee bugs of winter, perhaps it was from…. du du dummm!…. BAD MONKEYS!!!

One of the trickiest things to deal with once the bad monkeys of cancer have visited you, is the fear they will return. It is easy to feed this fear. You see it happen to others. You read on the internet how it happens to others. The doctors themselves tell you they are afraid it will happen to you. There is, no matter how long it has been, how successful the healing has been, a nagging dread that those damn monkeys found a way in before and what’s to stop them from doing it again?

In my case the fear is compounded by two things; there is some thought that my particular cancer, low-grade fibromyxoid sarcoma, does often metastasize in the chest area. That is why, besides doing MRI’s of the leg where they found and removed the original tumour, they want to keep an eye on my chest. In fact, I had a leg and chest scan scheduled for Dec 22 at the cancer clinic, which I postponed until later January, as it seemed insane to travel to town right before Christmas when I didn’t have to. Also, I decided that traveling to town to see a hockey game was a more important priority. Hey, I’m Canadian.

On top of the ongoing concern the monkeys will show up in my chest, is the knowledge that perhaps they already have. Back in October, during a routine check in with my family doctor, I asked him if he thought I should ask for an earlier CT chest scan, seeing as the cardiologist wasn’t doing one like we had all thought he would. My doctor suggested it would be a good idea, especially considering one of my earlier scan results from my stroke adventure had shown an unidentified lesion on one of my lungs. He had been sitting on that information for 5 months. Not sure why. I suppose I just have too many monkeys and such coming and going and he got confused.

So, knowing that all this time the big doughnut machine (CT) had seen “something” (“danger! possible bad monkeys!”), and knowing what little we know of this cancer…. it started preying on my mind that the cough and shortness of breath had nothing to do with the wee bugs of winter or my heart meds, but in fact was bad monkey business.

Imagine my relief then, when after the last guest of Christmas had left my mom’s place, and I was at last free from trying to hold it together, I completely fell apart. My cough became a cacophony, my bones and joints ached and my stomach hung up a “Closed for the Holidays” sign and stopped working. The wee bugs of winter turned into the Monster Who Lays Low All Before It.

I was overjoyed! In between delirium dreams and wretched retching, I delighted in feeling like I was just like everyone else, felled by flu and frost. It wasn’t the bad monkeys after all.

As I recover and head boldly off into this new 2015 landscape, it is important for me to believe that, to know it even – NO BAD MONKEYS.

Fear is a killer. But finding your way around fear when you have had a tussle with the bad monkeys of cancer is no easy thing. It takes mindfulness and a willingness to embrace joy and light and health. It takes bravery and resilience.

If you didn’t know you had such before, you soon discover you do. There is no other way.

Speaking of Bad Monkeys….. from a sad monkey….


I’ve been a very bad monkey! I haven’t updated here since March, when I was recovering from my cancer surgery. Wait until you hear why.

I use comedy to help me through life. I tend to not take myself or life too seriously, as it all seems over serious to start with. If that makes any sense. But you can see for yourself how I handle hard things, by how I wrote about my cancer diagnosis and treatment in this blog.

But what has happened this year has made it pretty hard to laugh, or even smile. So, warning… this thing is going to get tragic for a bit now.

In April of this year, my beautiful partner, Carol, began having more difficulty with the effects from her recurrence of Adenoid Cystic Carcinoma. Carol had been originally diagnosed in 2006, had 6 weeks of extensive radiation in the spring of 2007, and was diagnosed with a recurrence of the tumour in the original site, in the summer of 2012. She underwent surgery that fall, suffered mightily from side effects of the surgery and then underwent what radiation treatment was available to her without causing too much damage. ACC is a recurrent cancer. We knew it would come back, but it can take decades and sometimes people can live with it. Her prognosis was always poorer than mine, but we always held out hope she would dodge the bullet. Her attitude was great, she did her best to educate herself and make lifestyle changes and she strengthened her spiritual beliefs.

But the radiation treatments in the spring of 2013 only caused more side effects and struggles and when she began having balance issues we knew that was game changer. She hung in as long as she could, and then one day told me she felt she needed more care. We saw the doctor, he admitted her to hospital and they did a CT scan of her head again. This time the scan showed the tumour very aggressively growing. Suddenly the jokes of bad monkeys we had both been making about our own cancers seemed like a poor joke. These were deadly monkeys, evil monkeys. And they were out of control and the doctors out of options.

Still we held out hope she could find a new normal and manage ok.

A week into her hospital stay, I was visiting her when I suddenly felt my ears plug up, my head and shoulders felt heavy and I felt like I couldn’t breathe properly. I thought it was an anxiety attack, as I had earlier been told by Carol’s oncologist that her time might be limited.

Then my vision became slightly blurred, my speech slurred and I could not control my extremities properly. The idea I might be having a stroke crossed my mind, but seemed too ludicrous. One of those “can’t happen to me! not now!” things. Carol kept asking me if she should push the nurse’s button but I kept wanting it not to be happening. When I realized I could not move, and the symptons were getting worse quickly I told her to call the nurses. They rushed me to ER and diagnosed me with a stroke. I was airlifted by helicopter to a hospital in the nearby city.

The whole time I kept trying to tell them I had to go back to be with my dying partner. They made it clear I wasn’t in a much different space.

I suffered a basilar thrombosis stroke that the neurosurgeon who treated me that night said could have been “catastrophic” to me. They were sure that if I survived the night I would be left with permanent damage, but apparently I got very very lucky. The blood clot that had stopped the flow of blood to my brain broke enough that not only did I have all my functions back within 24 hours, I seem to have no lasting long term effects. I am more sensitive to loud noises and bright light, and for some reason I am now a morning person instead of a night owl as I have been my whole life.

They kept me a week in ICU, on IV bloodthinners and heart medications as they determined that the clot did not come from my leg surgery site, the most likely scenario, but rather because my heart has a poor ejection fraction, and does not pump enough blood back out. That could cause pooling in the heart chamber, leading to a clot, and the stress of my life probably helped kick that clot into my bloodstream.

Just a reminder folks… STRESS KILLS. Do not underestimate the effect it has on you. It’s like the sneaky thief who steals into the zoo and opens the cage for the bad monkeys to run riot. And they will.

I was able to recover enough to be with my partner in her final weeks. She was moved into hospice care in May and passed away in June, a week after her birthday, with me holding her hand. It was as horrible as it sounds, although I am grateful it wasn’t as bad as it could have been. She did suffer some but not as badly as they warned me she could. It broke my already wounded heart though.

So I have been trying to recover and find myself again. It’s been very hard because Carol was not only my partner but my best friend in all things. I have no immediate family where I live, and my friends have done their best but everyone has their own things to deal with. I have never lived alone as an adult so this is new for me.

And I have no idea where my health is at. I am on heart medications of all sorts, beta blockers, ACE inhibitors, blood thinners, statins. I was taken off my HRT. I am off work, so I have lost all my anchors and truly am trying to find my way back to life again. Some days I feel stronger and determined. Other days I am just fatigued and feel defeated. I feel like I was hit by that frickin banana truck… driven by crazy monkeys, not just bad monkeys.

The good news is my leg has healed better than I expected. I have quite a bit of strength back in it now, thanks in large part to the physiotherapist my insurance company connected me with. They also helped me with a gym pass and I’ve been working hard to strengthen the leg again there, and to try and get some of my strength and stamina back. That’s a harder fight, esp the stamina. I do well and then seem to fade for awhile. I have more testing of the heart and the artery later this month so hopefully we can get some better answers. I sometimes feel like I danced away from the bad monkeys of cancer only to get smucked by something much larger and more dangerous.

The MRI I had done of the leg in August showed no new bad monkeys so that is a good thing.

What’s funny is how quickly this cancer became a little thing to me. Perhaps one day it won’t be again – they don’t know a lot about Fibromyxoid Sarcoma but some of the things I have read suggested it has a propensity to come back later. I try not to believe that as I feel that can invite it.

But I am trying hard now not to invite my own demise. It’s hard because I feel so empty and wounded inside. So utterly devastated. Carol and I were together 30 years. Her passing has left a huge hole in my life, in my soul. And I’m sure one gets a kind of PTSD from going through something like that with a loved one. I was her only person. It was just her and I. I am grateful I was able to be with her through her journey.

Creatively I feel dead inside but maybe this blog will help me get my mojo back. I need to because one needs to WANT to live to survive bad monkeys, evil monkeys or crazy monkeys. I intend to do just that and to kick their asses. It’s the least I can do after what they did to me and my beautiful Carolka. ❤

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.

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.