No. Bad. Monkeys!!!


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

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.

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. 🙂

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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. ❤

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.

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