Bad Monkeys In The Falling Temple.

Since all has been quiet on the bad monkey front since the removal of half my calf muscle in my right leg, which has recovered very well thank you, I haven’t really felt a need to post here. My new health problems, because I get bored easily and am always looking for the next new thing, aren’t really in the monkey category. Having a wonky heart that likely nurtured a lovely little blood clot and then sent it out into the bloodstream in the midst of life chaos, is more a structural problem than an insurrection action.
It is possible that the bad monkeys damaged the very temple they seek to hide out in, but that’s how them monkeys roll. I think, really though, they just choose a not so well-built temple to start with. That’s what happens when your temple is built with 1950’s building codes, when alcohol and cigarette smoke was commonplace on the work site. From the start I kind of knew I had a lemon. I’m actually surprised to have gotten this far, especially since I maintain this place the same way I maintain my house, and my cars. In other words, with a prayer my luck doesn’t run out.
I could see the stroke as a sign my luck ran out, but in another light it is that I got very lucky. First, I escaped it without any serious damage – only a highly sensitive reaction to loud clanging noises and bright lights, so no work in kitchens for me! And I probably should steer clear of firefighting and police work.
And in the course of trying to locate the home of the little clot that could, they noticed my heart just wasn’t what it could be. That’s for sure! I was told by a heart technician that heart-break is a real thing, and I suspect it is partly behind the damage to my heart. But I have also had heart issues in the past, related to anxiety, because to me the world always seemed too loud and clangy, and too bright and harsh.
And then there’s the lifetime of using asthma inhalers, since I was about 5. I had heard they will enlarge your heart. I thought that meant I would be more loving, and maybe that is true. But it also meant modifications were made over time that may have subverted the stability of the structure.
So all in all, it’s a shambles, this temple of mine. I could clean it up, and I am trying. Some days. Some days I just sit around, waiting for the monkeys, leaving my junk food wrappers and empty bottles. Those are the not so good days, and I am trying to make sure I have less and less of them. As one gets older one needs to simplify one’s space. It is easier to trip over the junk and I am reminded of how close I came to konking myself right out of the human race when I plummeted in late April.
So the plan is to clean the place up, make it less inviting for bad monkeys and their ilk, and try to shore up the structure. I have had to chase around some “experts” in doing this, as they seem to be avoiding me. Right now I am trying to chase down these guys, electrical physiologists they call themselves, who suggested we install a failsafe in case my heart decides to take the day off. I don’t really like the idea, but I do need to know my heart won’t play hooky in the future as it kind of runs the place. Don’t tell my brain. It thinks it does, but without the heart, my brain isn’t going to be at work either.
As for the bad monkeys, well…. the CT scan I had done the night of my stroke, showed SOMETHING in my right lung (only took them 5 months to tell me that). That is where my oncologist (chief monkey hunter) suspects the monkeys will turn up if they come back. So I am having another MRI of the leg and then a CT chest scan in December, right in time for Christmas!
A nice Christmas present for me this year would be NO BAD MONKEYS!!!!
I’ve had a hard year, and I try to be (mostly) a good girl, so it would be nice of Santa to gift me that. ūüôā



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….


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.”
“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.

My Indolent Children

Sometimes I wonder why I am not more scared of this cancer I have. It was dismaying to find out the final pathology diagnosed it as low-grade fibromyxoid sarcoma, which is described as a rare, indolent, type of cancer. But in the ensuing month since coming to grips that, no, this isn’t just a little benign bump in my leg… or wasn’t, I should say, as said bump has been surgically removed… I have felt ok with walking around and saying “I have cancer.”
Perhaps it is because I now feel like I am a member of a club growing in popularity. At the rate we are toxifying our home planet and our own bodies, soon everyone will be in the club! And I can say “Oh, I’ve been a member for years!” and tilt my nose to the sky and sniff haughtily.
And what’s more, I am special. I have such a rare form of cancer, I have trouble even finding information about it online. Most of what I read seem to be a rehashing of one particular clinical study and the little research done on FMS. Or LGFMS to be more accurate. So no commoner type of cancer for me! More haughty sniffing ensues.
One needs to know the acronym for one’s cancer. It helps speed up conversation and makes it sound more established.
“Well, my LGFMS seems to be under good control now.”
“Oh? Well you are lucky. My ACC is being a right little… monkey… now.”
“I’m sorry to hear that. Did you hear about so and so and their FMTC? They are experiencing SOB and the OS isn’t good for that.”
“Oh dear. TS.” (“That Sucks”… a common saying in the cancer world).

I am not so calm about the idea of having a huge chunk of my leg excised to remove any possible cancer cell insurgents who may be hiding in dank holes underground, waiting for just the right moment to resurrect the insurrection… but as for those insurgents themselves, well, frankly, they don’t scare me quite as much as they may have startled my oncologist surgeon.
These cells are mine after all. They are like my babies, like all the cells my body makes day after amazing day. And they take after their momma. Indolent is a word I would use to describe myself at perhaps too many points of my life. The definition of indolent is lazy, disinclined to activity.
Now, if you are going to have trouble-making cancer cells in your body, wouldn’t you rather have lazy ones?
“Hey man, we should all get together and get out there and convert more cells to our cause! We could bring this body down in no time!”
“What? Oh, yeah… we probably should. But I dunno. I’m kind of good. What about you guys? Anyone want to go foment some more unrest? You? No. Me neither. Let’s just take our time man, there’s no hurry. I’m sure we will get there one day. Just chill and relax. It’s good here.”
This is a much better cancer to have than some type A driven cancer that is so bent on world domination that it is out and about, terrifying local residents into joining the cause to topple the very body that keeps it alive. Hmm… okay… I think I see the problem with the notion of anarchy now. This is what happens when you let extremists win. Everyone loses.
But there is no telling when my lazy old sarcoma cells might just get the wrong idea in their head. The survivors, if there are any, may even be so mad at the excisional biopsy taking away their little clubhouse and comrades, that they are already motivated more and plotting revenge. So I’m giving the troops (my surgeon and his team) permission to go in and do the usual Western medicine overkill policy and root them all out. Hopefully no troublemakers will remain after that, because if I was a surviving cancer cell after this, I’d probably be so pissed that indolence will be the last thing on my mind.
Hmmm.. I seem to have gotten worried now.
Perhaps after the operation…. I should give it a codename like Operation Final Removal… perhaps I should drop pamphlets and care packages to the remaining residents of the area in the hopes that if any LGFMS survivors are hiding out, they will see how benevolent and nice the world can be and will be happy to not only return to indolence, but perhaps even decide to become somnolent.
A somnolent sarcoma cell sounds much easier to manage. Shhh… let the little cutie sleep.

I’m sure it’s nothing to worry abou… oh oh.

I first noticed the uprising in early 2013, when sitting at my partner’s bedside in ER, I absent-mindedly rubbed the back of my right leg. There seemed to be a rather small, hard, somewhat mobile lump between my skin and my calf muscle.

“Huh,” thought I, “never noticed that before. Wouldn’t that suck if that was, like, a tumour? Guess I should check it out just in case.”

It wasn’t painful, although slightly tender if I pressed hard against it, and didn’t seem to change in size over time. And to feel it I had to have my leg at a certain angle, so the calf muscle itself pushed it up towards the skin. Obviously nothing to worry about. In the good old days, I would have just said, “Oh, I’ve got this silly little bump in my leg,” and welcomed it to the family and we would all have lived merrily on for years and years. Until, perhaps, one night it went berserk and killed us all. But perhaps it wouldn’t. Maybe it would feel at home and know it had found a safe¬† place in the world where it could just be a bump and not have any expectations of more for it.

But this is the 21st century. The century of toxins and human hazards. The age of 1 in 3 in their lifetimes, soon to be 1 in 2. (This is where everyone looks around the room, does the math, and feels for the other people because they will be the one, not you.)

So I piggybacked on the end of one of my partner’s appointments and as we were going out the door, said, “Hey doc, I just noticed this little bump on my leg. Right here. Do you think it’s anything to be concerned about?”

“Hmmm. (doctor’s always sound more expert when they go “hmmm” before giving their opinion)¬† Well, it wouldn’t hurt to check it out. I’m sure it’s nothing, but let’s arrange an ultrasound anyway.”

So off I went a week later to have my “nothing” looked over with ultrasound. I was a bit suspicious because of how quickly they got me in. Did the doctor suspect something he wasn’t telling me? Still, it HAD to be nothing because with everything my partner was going through with her recurrence and me being her only caregiver, there was no chance I was going down. The Gods would not be so cruel.

The ultrasound results came back and the doctor called me into his office. I expected to hear “Yes, it was nothing at all. Just a fatty lump. Just a bit of bacon fat floating around. You really shouldn’t be eating that.” Or something like that.

What he said, instead, was, “The ultrasound did not tell us what it is. It told us what it is not. It is not the usual benign things, like a fatty (bacon) bump, or muscle, or anything jolly like that. So now we need to do an MRI and that will tell us more.”

“Okayyyy…” Not the news I wanted to hear. But I just took it to mean the adventure would continue and I would get the ferry fare, which currently is the equivalent of the cost of a diamond tiara, paid for as I needed to travel into the big city where they have these high falutin MRI machine thingies.

The big city hospital called to book the MRI right away. I mean, they CALLED right away. The actual appointment was booked for January, 2014. This was back in March of 2013. They explained to me that they were actually booking for May, 2014, but my doctor had asked for a rush on it, so they could fit me in in just 9 months! I thought this sounded fine. Well, I thought it was ridiculous, actually, but I was in no hurry. Nothing to worry about. Just getting it checked out. Next year was fine.

The next time I saw my doctor he asked about the MRI and I cheerfully told him I was having it done… next year. He was not a happy doctor. He referred me to another hospital, in another part of the big city, and I was off to see them in August of 2013.

The MRI results came back and my doctor called me into his office. I was by now curious as to what this little bump¬†¬†that didn’t bother me at all, and kept a very low profile, was. The doctor told me the MRI had ruled out a bunch of benign things; cysts, swellings, lost peas, etc.¬†There was no diagnosis still, and then he told me the words which made my heart sink and my head spin.

“They want the soft tissue oncologists at the Cancer Agency to look at it.”

“They think it may be cancer?”

“Not necessarily. We are trying to rule that out here, and they can’t tell what it is from the MRI so they want another look. That’s all.”

Soon, sooner than I expected, always a bad sign, I got a call from the Cancer Agency. I had a biopsy scheduled at ANOTHER hospital in the big city (they have a lot of hospitals there – I suppose city people are always hurting themselves or something). At this point I was getting worried. This was “just” a little lump. I had to search to find it sometimes. It wasn’t growing, it wasn’t hurting, it was just hanging our peacefully. It certainly didn’t seem like a troublemaker.

It was strange to be assigned a soft tissue surgical oncologist and never actually meet him before having a core needle biopsy done, but that is how it happened. I was leery. I had seen what the medical profession does with things like cancer. I don’t exactly trust doctors, not like some people do. They are human and they have one particular way of seeing things, usually. And the Cancer Agency tends to be tumour myopic. You walk into the door and they greet you “Well hello, Ms. Leg Tumour! How are you feeling? Well, today we are going to slash/burn/poison your tumour and then we’ll go looking for more tumours we can use our cool new devices on. I’m sure we’ll find some. These tumours are the enemy and we are here to DESTROY THEM ALL!!!!!”

So, with a healthy degree of skepticism, and KNOWING I do NOT have cancer, I went in and had the core needle biopsy done. It didn’t take too long and was a bit unnerving as they had trouble keeping my little bump still enough to get samples. I don’t blame the little guy for darting out of the way as they tried to pull cylinders of tissue from it. I was hoping the bump wouldn’t get mad at me for doing this and exact some horrific revenge later.

My brother, who had accompanied me to the big city hospital, told me later he had been admiring how strong and confident I looked in going in, and was dismayed at how weak and wobbly I looked coming out. He had no idea how weak and wobbly I would become. We still don’t.

It took a few weeks before I finally heard back about the biopsy. I even spent an entire day traveling to the big city and meeting the mysterious surgical oncologist who had ordered the biopsy only to find out he still hadn’t received the results then.

That was the day it started to become too real.

When you are admitted to the Cancer Agency as a patient they practically grab you and hustle you into their eager arms. It’s a well oiled machine, as busy as an airport terminal some days, and before you can catch your breath you are on the assembly line. You are theirs.

I rebelled against that feeling. I was sure it wasn’t cancer. My doctor seemed sure it wasn’t. I was NOT planning on coming back to the cancer clinic so no need to fill out the long questionnaires and be weighed and measured and logged into the system. As I sat there, waiting for an hour and a half to see the surgeon, I decided that this was the Gods’ way of showing me more compassion for my partner’s own journey. I was being a given a glimpse of what it is like to be “it”. To be the one with the dreaded diagnosis. It is not a nice feeling. But I kept telling myself this was just an example. A little lesson, and it would soon be over. They would tell me it was in fact a wayward walnut that had somehow gotten into my leg and what a jolly jape that all was!

The surgeon, who did not have the biopsy results, told me he was quite certain that what I had was called a “schwanoma”, which is a collection of nerve sheathing tissue that is quite benign. And that I could choose to have it taken out or left. But let’s just wait for the final results.

My family doctor called me in a couple of days later to see the pathology report. And the verdict was…, uh, no verdict. The lab had narrowed it down to either a low-grade sarcoma called Low Grade Fibromyxoid Sarcoma, or a benign tumour called Ossifying Fibro something or rather. But then they had run out of tissue sample before they could make a final diagnosis. I imagined them going “Doh!” like Homer Simpson.

I looked both of those choices up on the internet, and knew I was going to die horribly. Both of them sounded not so great. But there really isn’t a lot of information online about them. I realized I may have something even rarer than my partner’s Adenoid Cystic Carcinoma, which is super rare itself.

The pathologist recommended “excisional biopsy”, which meant taking the whole tumour out surgically and then slicing and dicing and playing around with it until they DID have a diagnosis. By this point I was not having fun, but what’s a girl to do? Now I NEEDED to know.

I was booked in to the cancer clinic for day surgery and knocked out, and the (handsome) surgeon excised that poor little bump that was causing no one trouble Рbut who may have been thinking about it after having chunks rudely pulled out earlier. The surgeon once again assured me he was quite certain it would turn out benign, so I went home and limped around for 3 weeks while recovering from this seemingly massive operation.

It took almost a month to get the lab results this time, just in time for Christmas! Ironically, it was also right before Christmas that my partner was first diagnosed with her cancer back in 2006. Obviously Christmas is a bad time of year for us. Next year we should just go somewhere warm and pretend it’s not happening.

I wanted to pretend the final diagnosis was a mistake. A FINAL genetic test, very esoteric and obscure. declared that I had.. ta da!… Low Grade Fibromyxoid Sarcoma! I have cancer! Oh. Yay.

My partner and I are close like that. “You getting cancer?”

“Yeah, thought I’d see what that’s like.”

“Ok, me too.”

Maybe not the best plan, being primary caregivers to each other, but it is what it is.

Which is what I sometimes just have to fall back on. Denial is always the first stage. I asked my doctor if there was any chance the diagnosis was wrong. I knew what it meant – my surgeon had warned me IF it was not benign, but he was sure it was, then he would probably want to go back in and do a “wide resection” which meant cutting out a LOT of my calf muscle and generally just messing around in there. I went online and looked up the studies about this cancer. What I could decipher into plain English seemed to point to¬†a very obscure gene test. Hardly reassuring and not much to go on to choose to disfigure and weaken my pretty little leg.

I thought about stopping this silly adventure right here. I don’t exactly trust these guys, like I’ve said. I’ve seen what has happened to my partner and to others who have had surgery and other treatments.

But the surgeon isn’t only handsome, (did I mention that?), he’s also very confident and reassuring and a smooth talker. He has talked me into going into the city to ANOTHER! hospital in early February and having a wide resection done. He promises me he will make my foot permanently numb, disfigure my leg, and make¬†it harder for me to chase my little dog when she runs away. He’s one of those men my mom warned me about. And I am a girl who just can’t say no.

So my cancer journey continues. It will be a long, challenging recovery from this next, and hopefully LAST EVER!, surgery, and I will need to be followed up for many years to make sure that no further uprisings occur.

For nothing, it sure is turning out to be something.

Why, hello there.

Welcome to my new wordpress blog, “Monkeys, Bad Monkeys”. Let me explain… please.

I’m a something year old, something or rather, from somewhere or another. Perhaps I’ll fill those details in later but for now let’s just go with that.

I’m creating this blog on WordPress because a voice told me to. Well, it was my voice actually, saying “Hey, you know what I should do? I should create a blog on WordPress to talk about my fun little journey into the world of cancer. It is such a humorous topic, I’m sure many people will love having a good laugh at my foibles.”

Yes, I have cancer. Granted, it’s “only” a low-grade sarcoma, and we seem to have caught it early, so perhaps I have been afforded the luxury of making light of it where others can’t so easily with their own journeys in cancerville.
My partner for instance, who has a slightly less rare cancer (it’s a competition between us – who has the more rare form), a persistent little carcinoma that left home but returned with all it’s baggage and has over stayed its welcome already, has much more to deal with and it is understandably harder for her to make light of her cancer.

However it has been shown that laughter is a good immune system booster, so hopefully I can make her, and others laugh a bit here. I’ll probably also make you cry at times because that’s just how one copes at times with the fear and uncertainty and feelings of loss.

The title of this blog was inspired by my partner asking me one day to come up with something funny or different she could use to answer when people, often near strangers, ask her what she “did to her eye”. She has had surgery and radiation that affected that area and was looking for some different answer for some people who really shouldn’t even be asking such questions. So I thought for a minute and suggested she just look at them very seriously and answer, “Monkeys.” And if they persist and ask something like “Monkeys? I don’t understand. What do you mean monkeys?”, she can just shake her head and mutter “Bad monkeys.”

Sometimes I think of my cancer cells as bad monkeys. They certainly surprised me, showing up as they did, and I shall talk more about how all that happened in further posts.

But for now make yourself at home and I hope you enjoy your visits to my little corner of WordPress (I should get paid every time I mention them in this post!). Just don’t get too comfortable. I don’t need any more freeloaders.

By the way, the header image (which is no longer the header image – I’m still tweaking this blog) is taken from an illustration by a German illustrator named Lothar Meggendorfer, who was well-known for his pop up books published in the mid-late 1800’s. See how cultured I am? Thanks to Google and Wiki.

This is the full illustration which had to be cropped to fit the WordPress (kaching!) header space. Now those are bad monkeys!

Lothar Meggendorfer

Lothar Meggendorfer