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. ❤

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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

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!

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.