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.

The Automatic Shutoff Gift


After years of killing innocent pots, pans, and kettles with the flames of distracted cooking, I finally wised up and bought myself an electric kettle and electric rice cooker, both with automatic shut off features. Now, when the water is boiled, or the rice cooked, these devices quietly shut themselves off and patiently wait for me to remember that I was at one time interested in what they were cooking or heating up. This patience is needed, as sometimes the black hole of Facebook or some similar, terribly important and vital, internet offerings will have sucked my mind and soul into a place where time passes slowly there, but quickly back in the real world. This is similar to one of those planets they visit in the movie Interstellar.

What does any of this have to do with bad monkeys or my health and healing?

Well, I was thinking about it this morning – we ALL have that automatic off feature in us. At some point in time we will be, shall we say, cooked, and a switch with control over our fates will flip and that will be that.

And, in a way, that is comforting for me to think about. When one hears dire news of ones health, and graven faced doctors deliver you the news that you are just a bad monkey or two away from absolute ruin, it is natural we get scared and feel panic. We want to fight for our very lives. Which is good. It is important to want to fight. But it can also set you up for the feeling that you are failing in that fight, and if you start judging it too much that can cause depression, more panic, confusion, anger, etc… a lot of emotions that might actually interfere with not only your healing energy, but your ability to enjoy the time you do have remaining,

We all have a switch that will turn the process off, so worrying about when that is going to happen or how, is not going to change anything, except make you feel more anxious and unable to enjoy that very process.

Our egos think very highly of themselves. They think they are the centre of the universe and, thus, they MUST stay alive to keep all matter existent! Which is true in a sense. But also an illusion, ignorant of a greater reality. It is my ego which veers out of control when faced with the idea of being switched off one day. How dare they! Don’t they know who I am?

There are many ways to learn to accept and embrace your automatic shutoff switch. And doing so will allow you to accept the inevitable and allow you to enjoy the process of cooking through life without worrying about whether you will burst into smoke and flames. You won’t. When your time comes, the switch will flip, and you’ll be ready for your next adventure.

(image from dzdrawz on tumblr)

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!

Wiping Away Cancer!


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

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

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

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

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

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

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

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

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