Author: pioneerintrees

Making it Work > Articles by: pioneerintrees

Test Me Again Already

Posted on September 11, 2018September 12, 2018 by pioneerintrees

Here is diagnostic imaging. More times than not there is no one sitting at the desk. Thus the bell. I cannot figure that out. I mean, why not sit at the desk? Why sit behind the door and wait for someone to ring a bell? Strange. But I digress.

Why Here?

This is the area where I get my MUGA scan done. This is my 4th MUGA. And I’ve had other tests done in diagnostic imaging too – I had my port put in here. Had a couple of CT scans of my carotid and renal arteries after the heart attack. An MRI after the initial breast biopsy to help them determine how much of my boobs they’d chop off. An angiogram to figure out why I had the heart attack. That’s all I think. (You could also have a bone density tests, x-ray, ultrasound – oops had one of those when I was passing a kidney stone. Forgot about that one. But there are a lot more tests there and I am not having them.)

This is the volunteer guy who walks people to the correct room. Why? Because it’s a freaking labyrinth. (You’ll note he’s walking away from me. I know my way.)

*All volunteers wear green vests. Very fashion forward.*

The MUGA

First of all the guy who does the test is not a nurse. He’s a nuclear medicine technologist and he is one of my favs at PRHC (other than you Jen). He is super friendly and reminds me of Brent Butt. Spitting image. But all business and not very funny. Ok not funny at all.

MUGA stands for multiple gated acquisition. (Huh? Don’t worry about it. Keep reading and you might see that there are some gates. Or you might not.) Getting the MUGA is a three-step process. You get the first injection (needle) in a little office.

*Needles don’t hurt. It’s all in your mind.*

The stuff in the first injection is a tracer. It essentially helps the radioactive stuff in the second injection stick to your red blood cells. You have to wait 15 minutes after the first injection, then Brent will come and take you to the machine where you get your second injection. (You’re not allowed to take pictures of all this stuff so my photography had to be done skillfully and without Brent noticing. Heh heh.)

Setting up for the Test

The second injection happens JUST before the test and that is done in a big expensive machine called a gamma camera. There are 2 at the PRHC.

*See? Totally looks like Brent. I mean … look at the machine.*

The remainder of the MUGA prep happens on the very narrow but relatively comfy million dollar bed:

2 sticky electrodes are put on my chest and 1 on my side (clothing choices matter, people!)
3 leads (long wires) are hooked up to the pads (to measure the heartbeats)
Brent gives me the 2nd needle, this one full of radionuclide with a half life of 6 hours (honestly the radioactive stuff is set up on a little table in such as way that you feel like you’re in the Princess Bride and about to be stretched or given a secret potion)
I have to put my left hand under my head and my right hand under my butt which feels comfy for the first minute or two
BRENT covers me with a blanket (not warmed – meh) and the bed slides into the big camera
the plates lower over me until its about 5cm away from my chest
the lights dim and I am instructed to lay still and not to fall asleep (slows your heart)
I lay there for 10 min listening to 80s music and trying not to swallow, sneeze, move or think about the fact that my left shoulder is slowly popping out of my skeleton
the room is cold because the machines give off a lot of heat … I’m thankful for the blanket and for the triangle wedge under my knees – I think about how nice that would be when you lay in savasana …anything to avoid thinking about the searing pain in my left shoulder
finally get to reposition after 10 min – now both hands have to go under the butt
lay still for 10 more minutes and chill out to Genesis and Glass Tiger

Why do I even have this test?

Brent explains that the scan itself is essentially a movie of the heart beating. They are measuring the strength of the muscle as well as the “ejection fraction” or the rate at which the heart is pumping the blood out. If the scores drop then my oncologist re-evaluates my treatment because one of the major side effects of Herceptin, the treatment I’m getting for my HER-2 positive breast cancer, is that it can be pretty hard on the heart. (But the heart attack was TOTALLY UNRELATED.)

Ta ta to Brent – I’ll see him in another 9 weeks for MUGA #5.

Coming Up For Air

Posted on September 8, 2018September 9, 2018 by pioneerintrees

It’s coming up on a year since that first mammogram … holy hell, so much has happened since then. It’s a bit surreal to think back on it. I ran into an old BFF today while searching for yard duty vests at Talize (because that’s what all good Ps do) and we were chatting about it. Her son, now 20 and happily shopping too, was diagnosed with Hodgkins Lymphoma when he was 10. We talked about how, once you’re diagnosed, you are basically swept along from one appointment to the next. It’s just happening to you. And then it slows down and you come up for air.

Salty Air

I came up for air – after the surgery, chemo, heart attack and kidney insanity – and as soon as we could, we went on a family road trip to PEI. Because if I’ve learning anything from this shit show, you can’t keep saying “we’ll do that next year”.

cheesy photo — *Everyone must have one cheesy trip photo. Here’s ours.*

We had a grand time on the road, in Montreal, staying at whack places, traversing PEI.

riding by the sea — *One should always rent bikes. Especially when in flat provinces.*

And then, the best of all, visiting Deborah and Michael in Maine. It was so great. The sea, the air, the creepy things they made me touch, the seaweed, the rocks.

*You can’t be a wimp if you want to get to the kayaks at low tide.*

*The rocks on the Maine coast are so gorgeous. Hence the black and white artsy shot.*

Hot Air

And then that was done and we came back to Ontario where everyone was melting. I threw myself into doing practically nothing at the lake. It was pretty much the best summer for being by a lake. Hot and hot and hot.

reading on the dock — *No Netflix at the lake, only good books.*

I decided I’d better do SOMETHING productive, so I finished a project that I started two years ago (… because if I’ve learned anything …). When we first bought the place the little bunkie was stinky and dated. We ripped the laminate flooring off of the floor and counter and backsplash (they must have really loved it).

counter after stripping it — *Pretty rough.*

I tiled the counter and planned to cover up the black marks on the wall that was left from the glue.

tiling job — *My first tiling endeavour. (Not giving up my day job.)*

I bought some old tin ceiling tiles and scraped them till the loose paint was off then cut them to fit each space. With tin snips from 1902. That was fun. Then I sprayed them with varathane a couple of times. It’s amazing how you can think there’s no wind but there really is wind. Just sayin’.

cutting tin — *A great forearm workout. Can’t get that at cardiac rehab!*

Gluing the rectangles to the wall was a bit trickier than I’d anticipated. The pieces needed to be pushed against the wall till they set … about 12 hours. I had to be creative and brace them with various objects.

bracing the backsplash — *By the end I had garbage pails, chairs, sticks and utensils wedged against the backsplash. McGiveresque.*

In the end the wall looks pretty good.

backsplash done — *Kinda weird but I like it.*

Not long after I got the idea to use tin for backsplash, I decided that I could use the scraps to make up some fish to hang on the wall. You know, “tie in” the backsplash. I’d seen some done a few years back – don’t know where – and somehow they stayed in my memory. So I went for it.

Tip: don't use white glue.
I love the tin on this one. The eye is a rock from Maine.
This piece of tin had a nail hole in it so I added some scales.
I drew on some scrap plywood and Paul them out for me.

I really enjoyed making the fish – and I think that they turned out really well. So I hung them on the crapper at the top of the path so that EVERYONE has to look at them.

fish on the outhouse — *Swimming away from the stank.*

I figure that if I decide Dougie starts to ruin education and I have to quit, I’ll make fish and sell them on Etsy. I mean, everyone needs a few tin fish on their walls…

And Now?

New school and pretty freaking tired… but I’m loving it and am finding ways to cope. The kids are amazing – everyone has to choose a night to make dinner. (I have a feeling that my next blog entry might be on teenager dinners … ) We all commit to having dinner together at 6:00, including me (which is hard but I did it every night in this first week so that’s something). So far so good. Week two could be a bit hellish with a MUGA scan and two late nights at school (Council mtg and Open House). So we’ll see how I’m doing on Friday.

I likely won’t look like this.

PS Only 6 treatments left …

Brain Fartitis

Posted on June 27, 2018 by pioneerintrees

I’ve been done chemo for almost 3 months now. I feel great, I’m back at work half time, I’m pain free, I have some hair growth happening, I can drink wine and eat anything without repercussions. There are a few side effects that I still have to deal with from the drugs that I’m still taking: beta blockers (to keep my heart safe) and Herceptin (life saving breast cancer treatment). Mostly tiredness. Some aching. That kind of thing. Nothing horrific.

I do have one major side effect involving my brain. Basically it’s sluggish and really shitty at couple of its jobs. Most people in the field call it chemo brain. People laugh when you say that … or likely think “oh here she goes playing the cancer card …” (and maybe I did that in a few times, ok whatever). But it’s real, people!

Here’s a tutorial, but first:

How does memory even work?

In basic terms are three types of memory:

sensory – outside of conscious control … has to do with the 5 senses and lasts less than a second (I’m not worried about this one!)
short term – the ability to remember and process information at the same time (this is me glancing at my BP stats on the monitor and holding them in my head till I can open my journal and jot them down … if it takes too long I forget) – if I make a conscious effort to retain it (consolidation), then it will transfer into my long term memory through the hippocampus (who doesn’t love that word?)
long term – storage of information over a long period of time – some researchers believe that humans can retain an endless amount of information (useless and otherwise), we just have a hard time accessing it (I find this hard to believe – no idea what passé compose is … although I remember the words passé compose. whatever.) – to make a long term memory you have to change or strengthen the neurons (nerve cells) in your brain – there is some evidence that if the connections between the neurons in a neural network are overwritten OR weakened / damaged you can forget. HA!

What is chemo brain, ACTUALLY?

The American Cancer Society defines it as a decrease in mental sharpness and an inability to concentrate and remember details.

Experts agree that there are memory loss issues related to having had cancer treatment, but they don’t attribute it all to the chemotherapy. After all, it could be any number of things that happen during treatment, namely:

stress
lack of sleep (some drugs cause insomnia while others, like steroids, make you feel like you’re on crack)
poor nutrition (crackers, porridge and pudding … not a lot there but white glue substitutes)
stress
100 other things that don’t apply to me, like radiation, pain, stem cell transplant, surgery (ok I had surgery but my brain seemed totally fine after that…)

I agree that lack of sleep and stress might affect my brain, and poor nutrition? This is questionable. University students eat crap for months on end and are getting degrees, so I don’t believe it. Plus, there is NO WAY that a massive amount of chemo poured into my superior vena cava wasn’t largely responsible for messing up my brain. I blame it on the drugs.

(This is your brain. This is your brain on drugs. Any questions?)

How is chemo brain affecting me?

My long term memory recall is tragically slow.

When I run into someone who I know but haven’t known for very long – like a colleague who works in another part of the board, I have to WORK HARD to pull the name out of my brain. It’s incredibly annoying. When this was first happening to me, in the first few minutes that we are chatting I was not listening AT ALL. I was still trying to remember their name. Don’t get me wrong, I’ve always been shit at learning names, but this is not the learning phase … this is recall!!! It’s exhausting. Now I just say HEY! with exuberance and don’t even bother trying to remember their name.

The challenge with pulling out words from my memory is not just about names. In conversations I often can’t grab onto the word that I want, when I want it. I feel like I have to walk through all of the Get Smart doors before I can access a huge portion of my vocabulary. Pisses me off because I’m a fast talker and it affects my witty repartee.

The transfer of info into my long term memory doesn’t appear to be functioning.

As I say – I’ve never been a rock star at learning names. It’s always taken a long time. Rehearsal has always helped. I would say a new name a few times in the conversation and bingo! Nailed it.

Now, on the other hand, I can hold a name in my short term memory for about 5 seconds but it doesn’t get transferred into my long term memory. Going to a new school with almost 500 kids is kicking my ass!! A student will tell me their name and as they look up at me, smiling broadly, in my mind I’m thinking “Hi xx. I’m really sorry but it’s going to take me about a year to remember your name. Just tell me it EVERY TIME we meet.” I’ve been at my new school 4x and can remember one kid’s name, and that’s because we had a meeting with the kid’s parents. (Ok two kids, but I knew the other kid before I went there.) I figure I either initiate school uniforms with names on the chest or have a kid walk with me and be my name person. I could point to a human or say a clue like “red shirt”, and they would say their name. Seems easy and effective. And if I spread it out, no one would really miss a whole lot of their education.

My working memory has a short time limit.

Note: working memory is a part of short term memory.

For example, the other day I was meeting with someone to talk about an important issue. While I was listening I was doing what we all do in meetings: processing the information, making connections to other things I knew about that thing, asking questions in my head, identifying the main ideas (and jotting them down), making judgements, a plan of action (e.g., “ok, I need to be sure to xxx”). As if that wasn’t enough, at some point in the conversation I was also thinking “oh crap that reminds me, when this person takes a freaking breath or wraps it up, I’m going to need to ask them about xx”. Blah blah blah and eventually the conversation wrapped up. I was then ready to shift to the other idea / topic / important thing. But you guessed it, that idea / topic / important thing was LONG GONE. There was ZERO chance that I would EVER remember. ZERO. (Making a note right now: buy more sticky notes.)

I miss my working memory. Now when I’m in the veggie section of the grocery store and think “oh didn’t put sour cream on the list – I must grab some”, I head there immediately or kiss the sour cream goodbye. No list? No hope.

What can I do to mitigate it?

I had an appointment with my oncologist yesterday and described the memory issues I’m having. She said that it was normal and it’s early days yet – plus the major coronary event will have added to that. (Waa?? Hmm.) I asked her what kinds of mental exercises I can be doing to help me kickstart my brain. She said “I guess you can look it up online.”

THANKS. A. LOT.

The only advice a cancer patient EVER seems to get from an oncologist about recovery is to: get plenty of rest, eat healthy foods and exercise. Blah. Blah. Blah. No. Fucking. Kidding. It’s as if they are programmed for providing treatment to kill the disease, but not to aid in the recovery. You’re on your own. Just eat more veggies. That should help.

So today at treatment I mentioned something about it to my nurse (to be honest I totally forget what I said LMAO). She brought me a much photocopied booklet called “What you can do about Cancer-Related Cognitive Dysfunction”. Bingo! Several logical strategies about organizing yourself, but also some good strategies under “How can I sharpen my mental ability?” Love the avoid multitasking suggestion. I’ll get right on that. Hahahahahaha

Note: I was able to find a more up to date version of this booklet online.

How long will it go on for?

I’ve been told 3 months to 1 year. Other research says that it takes rats 3 months to regain their memory which translates to 10 years for me. Great.

Next time you come over, wear a name tag.

Twice Sanded

Posted on June 20, 2018 by pioneerintrees

Today as I continue to inch closer to cardiac rehab at an alarmingly slow pace, I got to participate in a stress test. As the technician was sanding my chest ELEVEN times for ELEVEN electrodes, I thought OK THIS IS DEF A BLOG POST. But before I get to the test, let me tell you about the destination. Cardiac Rehab. I am ALMOST in rehab. Almost.

Why Cardiac Rehab?

Once you’ve had some kind of heart attack (stemi, non-stemi, total, partial, added stent, surgery, some drugs, lots of drugs… so many choices…), and it’s been repaired, you still feel a bit, shall we say, scared shitless to do anything. When I was released from hospital after my SCAD heart attack two months ago I was told not to lift anything over 30 lb, not to do any vigorous exercise other than walking and yoga. Pay attention. “YOU KNOW THE SIGNS NOW”, said the nurse with a meaningful look. Ya, ok… sure thing. Yes I do. No showers. Call 911.

So now, when faced with various and sundry activities such dancing like no one’s watching at a wedding, or swimming in cold water at the lake, you tend to second guess yourself. Your brain has this conversation:

I’m so freaking hot – I’ll just jump in the lake and swim to the raft. (Dip the toe.) Holy Christ, the water is freaking cold! Hmm. What if it’s such a shock to the body that I have a heart attack?

YOU’RE NOT GOING TO HAVE A HEART ATTACK!!

How do you know? I might.

IT’S NOT GOING TO HAPPEN AGAIN.

How do you know? It might.

YOU ARE A TOTAL WUS.

Seriously, we are in the middle of nowhere. If I have a heart attack it’s going to be a serious pain in the ass. Maybe I’ll just put my feet in.

FOR CHRIST’S SAKE. ARE YOU KIDDING ME?? WALK DOWN THE LADDER GRADUALLY.

I never do that! That’s def for a wus. I jump in or forget it.

OH. MY. GOD.

So ya, in my opinion, cardiac rehab is going to allow me, the boobless wonder with the questionable heart, to exercise AT THE HOSPITAL and build confidence. That’s basically why I signed up. Let me exercise with a stretcher in the same room. Thanks very much.

What is Cardiac Rehab??

Yes yes, it’s seems a bit obvious – rehabilitation for your heart. True. But what IS it? Apparently it’s not just working out in the same room as someone who can operate a defibrillator. Nope. Nope it’s not.

Side note: I was given the choice of doing Cardiac Rehab at the hospital or at the Wellness Centre. I mean really?? What heart attack survivor wants to exercise away from the hospital? I know I know. I have a long way to go.

*It’s a destination. Not just a process. Who knew?*

Before you can start Cardia Rehab, you get tested tested tested and fill in questionnaires and have interviews. And THEN you are expected to exercise in a variety of ways (kinda like I was going to do BEFORE the heart attack). AND you are expected to eat better (I figure that this healthy eating thing is just for the atherosclerosis people, you know, the ones with crap in their arteries- mine are just falling apart – totally different. I say this as I sip on some Kim Crawford Sauvignon Blanc. Hey, I was sanded today, I deserve it!). Anyhow, you meet all of those expectations and eventually you are strong and HEALED!

Side note: I’m so thankful I don’t have atherosclerosis because it’s a bitch to say. I can never seem to pull it off in a conversation with the nurses.

Last week I went for my first appointment at Cardiac Rehab – had the tour and met with a nurse (?) therapist (?) who was very friendly and laughed at all of my jokes. I liked her obviously. I had to fill out a massive questionnaire about my eating habits – indicating on a sliding scale things like # of portions and healthiness for each food category. For example: light and healthy oils for cooking on the left, margarine in the middle, butter butter butter on the right. I knew I should be circling shit on the left, but it was almost always on the far right. Oh well. Good to have a crappy baseline. Easy to improve.

Once she knew everything about my health and diet and what I’ve been doing since my heart attack (nothing), she told me about all of the classes that I can sign up for. They’ll teach me about the heart. And heart attacks. What to do. That kind of thing. As I was thinking lots of things in my head that weren’t very positive and likely on the arrogant side (but keeping my face interested), she told me that there was a class about to start that I might be interested in some day. She swept the curtain back with a flourish, and there, seated in a semi circle attached to various oxygen machines or mobility devices were my comrades. It was so hilarious. I mean. OMG. I was just so funny. Anyway.

Then I was told that I couldn’t start till I had a stress test. Wait for the call. Okie dokie! Outta there.

What is a Stress Test?

Ahh well, it is actually a bit stressful. I went to Cardiac Rehab on time but by mistake, then had to rush to the Cardiology Clinic downtown to find that I was an hour early. Sheesh. CHEMO BRAIN. (I’m for sure going write about that next.) PLUS, during the test I couldn’t take a selfie – I was holding on for dear life. Stressful.

First the technician had me sign something. I didn’t read it of course. It was likely about having a heart attack – but I figure that’s her job, so it’s as good a place as any to have my next one (inside voice). She gave me a cute little pink top that I thought about stealing to go with my hospital pants. I had to leave it open at the top so that she could attach the 11 electrodes.

*Yes, my chest is not perfectly flat. I have boob buttons. Booblets. Boob babies. But that’s another ~~rant~~ post, just sayin’.*

THEN I SAW THE SANDPAPER, and without any “I’m really sorry that I have to do this”, she just started scratching away at my lily white skin. OMFG LET ME TELL YOU! The last time I was sanded was just before my angiogram and I thought I was going to punch the nurse in the face. At the time my skin was almost transparent from the chemo so it was horrifyingly painful. This wasn’t as bad since my skin is healthier, but ELEVEN TIMES, PEOPLE! How good of a connection do you really need? Why not just hack away at it? Grab a carrot peeler? For reals.

Then she put on a blood pressure cuff. Took a reading and we got started. I had to walk on the treadmill with 11 cables, a chest pack and a BP cuff till my heart rate got over 140 beats/min. I figured that would take no time at all, I’m so out of shape. But alas, apparently the beta blockers that make me so tired also slow my heart (for obvious reasons), so it took longer than I would have liked. She told me that every 3 minutes the machine would speed up and the incline would go up and she would take my BP. I was doing well till it felt like I was power walking up the hill to my cabin (which is freaking steep). I was starting to worry about the next 3 minute interval and I was only at 130 beats / min … and then JESUS GOD I HAD TO RUN! Now, this is not something I do. I find running to be TOTALLY UNNECESSARY. After a while as I was holding on for dear life and likely looking totally panicked she said “getting tired?” and I gave her a WTF ARE YOU JOKING kind of face. She turned off the machine. By now the sanded chest was SCREAMING from sweat and I was ready to lay on the floor. But I decided to not do that.

I did it. All done. I wait for the call for my first Cardiac Rehab session and hope that I don’t have to do that test again. If I do, I’m taking the pink top.

Moving Forward #asonedoes

Posted on May 15, 2018May 15, 2018 by pioneerintrees

Just to look back one more time … I present to you, my timeline of wtf.

The first bit:

Sept 14 2017 – routine mammogram #squished
Sept 21 – mag view mammogram (to get a better look, ya know?) #surewhynot
Oct 6 – biopsy #holyshitthatsawkward
Oct 19 – family doc reads results – CANCER. No biggie, I figure. I can deal. #cancerwtfareyoukiddingme
Oct 24 – surgeon appt – omg so HOT. phew. #silverlining #thereisagod
Oct 31 – MRI – met mr. lorazepam – weeeeee #notanaddict
Nov 17 – surgery – bi-lateral mastectomy – 53 staples, 2 drains and ms. oxy – weeeeee #thatsgoodshit #ihavesomeleft
Nov 23 – drains out – NASTY NASTY #justtrytorelax #didntpunchherout
Nov 27 – staples out – omg noooooooo – #breathebreathenamaste
Dec 7 – hot surgeon reads path reports – lymph nodes negative YAHOOOOO but not so fast he says, you’ll hear from an onc soon… #soonmeansnothing #merrychristmas

The Next Bit:

Dec 29 – fast talking, eye rolling oncologist explains treatment plan #shedidntbreathe #wedrovetothedirtyshwaforthis
Jan 4, 2018 – MUGA scan (heart test) #meh
Jan 9 – portacath insertion – FASCINATING #heyicanfeelthat
Jan 10 – first chemo #icandothis #circlebackwiththosecookieswouldya
weeks and weeks and weeks of awesome friends visiting and sending me shit, and me doing my damnedest to mitigate some rather nasty side effects #loveyoupeople #chemosucks
March 6 – Jenny shaved my head! #liberated #peoplelookbetterwithhair
March 14 – 10% reduction of chemo due to neuropathy development in hands & feet – I start freezing my extremities with ice – people stare #shutupimbeingproactive
March 28 – last chemo WOOT WOOT – feel like shit, but so happy it will be downhill from here – EXHAUSTED #imisswinesomuch

The last bit:

April 15 – heart attack WTF?? (It really does feel like your chest is in a vice. And it’s hard to breathe. NASTY NASTY) #shouldhavecalledanambulance #itwasnttheavocado
April 17 – angiogram to confirm SCAD “Spontaneous Coronary Artery Dissection” – it’s a thing #lookitup
April 24 – meet with stern oncologist who I notice thinks with her eyes shut – no Herceptin for me until she talks to my cardiologist (ya, well, I don’t have one… OMG REALLY?) #idontwanttorestanymore #fuckoff
May 6 – Hike for Hospice (in a wheelchair, but I did it!) – My team raised over $11,000 WOOT WOOT – I love my peeps #fundraisingwin #dontaskmetodothisnextyear

Ok what? Unplanned meets planned. Did it all.

The final straw bit:

May 7 – @ 2 am I start passing a kidney stone – think I’m dying – mr. morphine saved my ass – SWEEEEEET – CAT scan confirmed it #thankspaulforholdingmypukecontainer
May 10 – cardiac ultrasound – technician is no nonsense – asked her to ultrasound my boob bumps – NOT IMPRESSED WITH ME #omgsofunnyinmyhead
May 11 – kidney stone expelled – the mother fucker had two sharp points #shouldibronzeit
May 15 – met with oncologist who actually smiled (maybe she thinks I deserve ONE smile) – clears me for treatment and agrees to send my kidney stone off for analysis #inquiringmindswanttoknow #heyyoudidsomethingnice
May 16 (tomorrow)- Herceptin resumes (this is my 6th treatment) – have to have a loading dose again because it’s been 6 weeks since my last treatment (double the amount and a 1 hour observation period CRAPPY but I like the chemo suite … free cookies, ya know?) #petitioningfororeos

So the breast removal is done, the chemo is done, the heart attack is done, the kidney stone is done. All I have left is my targeted therapy, Herceptin. I continue to get it every 3 weeks till I have had a total of 18 treatments. In order to make it fun I have decided to take the remaining number of treats to the nurses. 12 tomorrow – a dozen of blueberrry muffins, me thinks (last time it was 13 chocolate dipped oreos! NOM NOM). #gottamakeyourownfun

The only other thing is, well, recovery. I somehow keep forgetting that I’m actually IN recovery. Both from the chemo and now the heart attack. So ya, being slow and tired is the new normal and being patient with it all is also pretty new. #workingonit

Thanks for all of the lovingkindness. Strength in numbers, I say! #peaceout

SCAD

Posted on April 19, 2018 by pioneerintrees

So it’s now Day 5 (with Day 1 being the day that I had the heart attack). Before we go too far, a bit of a recap. I had a heart attack. I went to emerg. I had tests. The bloodwork showed elevated levels of troponin which confirmed heart damage. I had more tests. An angiogram showed why it happened – not a buildup of plaque or gooky lard from the cake I eat (surprising, really…), but from a sudden rupture: SCAD (Spontaneous Cardiac Artery Dissection).

I went home with some instructions about my wrist (where the angiogram needle went in), and vague directions about resting and a promise that a cardiologist would call me. Fine. So I’m now sitting here analyzing the little info that I have.

Non-STEMI

After my 2nd set of blood tests came back I was told my the emerg doc that I had a non-STEMI. (Often written NSTEMI.) Here’s an overview of what it means:

STEMI means ST-elevation myocardial infarction (heart attack)
non-STEMI means non-ST-elevation myocardial infarction (duh)
ST refers to the ST segment, which is part of the ECG heart tracing used to diagnose a heart attack. The ST that shows up on the ECG creates a specific appearance on the monitor. (see below)
A STEMI shows up well on an ECG, my non-STEMI didn’t show up at all.
A STEMI happens as a result of a complete blockage in a coronary artery. A non-STEMI heart attack is when an artery is partially blocked and blood flow is severely reduced.
A STEMI attack carries a great risk of death and disability. A non-STEMI is less damaging to the heart.
They like to write STEMI in CAPS.
An ECG and an EKG are exactly the same thing. (EKG has been translated into German. Go figure.)

The photocopy

Looking at the printout of my arteries that I posted in my previous blog entry you can that the damage is in the dLAD. Here it is again:

Of course my first question was what the hell is dLAD??

Well, it’s the Distal Left Anterior Descending Coronary Artery. I obviously needed to know a bit more about arteries so that I could understand the photocopy better. Here they are:

The LAD is an important artery since it supplies over half of the heart muscle with blood. Of course it is! So the dLAD is:

on the left side of my body (looking out at the world from my eyeballs)
runs down the front wall of my heart

Second question is what does 95% mean?

Ok I know what 95% means …, but what does it mean in the context of SCAD? I believe it means that I had 95% blockage because of the SCAD. So only 5% of the blood was getting to my heart muscle. Yes?? I think so.

The Diagnosis

SCAD. I can never just SAY that in expanded notation. It takes me a LOT of thought to bring it forward in my chemo induced state of crappy recall. Spontaneous (not sudden). Coronary (not cardiac). Artery (not arterial). Dissection (not disaster). Say it with me: spontaneous coronary artery dissection. There.

What I know to be true about SCAD:

it’s relatively rare
it happens most commonly to women in their 40s and 50s
80% of the time the women are young, healthy and active with none of the risk factors that you would normally think of (like diabetes, high blood pressure, eating crappy food 24/7)
there is no known cause – happens a lot after childbirth, doing extreme exercise, after lots of stress – but nothing definitive (NO WHERE can I find chemo listed in any of the literature as a cause)
the symptoms are the same as those for any kind of heart attack (chest pain, rapid heartbeat, pain in arms / shoulders / jaw, shortness of breath, sweating, tiredness, nausea, dizziness)
treatment is generally blood pressure meds and beta blockers (prevents clotting)
there is a high risk of recurrence (oh shit.)

What Actually Happens in SCAD:

The artery wall has 3 layers. When a tear occurs, blood is able to pass into the innermost layer and get trapped there. In some cases a clot forms there. This trapped blood or clot starts to bulge inward, narrowing the artery and preventing blood from getting to the heart muscle. BAM! Heart attack.

Types of Arteries — *The blue arrow represents blood flow, in case you were wondering (just like in the pad commercials).*

Remaining Questions

So… the event happened. I’ve seen the needle and the damage done. But I still want to know:

– Is this because of the chemo? Or is it because I had just spent 30 min scraping 10cm of ice off of my hot tub? Or is it because I started exercising again?

– Can I continue with my Herceptin treatment?

– Why doesn’t a cardiologist call me? Can’t he/she see that I have so many questions? Calling me “within 4 weeks” doesn’t work for me. OMG!

And now back to my quiet, sedentary activities. Somebody pass me a chocolate.

Angiogram Highlights

Posted on April 17, 2018 by pioneerintrees

It’s nearing the end of day 3 and I’m ready to go home. I’m typing with one hand and this floor feels prohibitive to sleep. I would leave now if I had this needle out of my arm!

Yes, it’s sore and it looks sore (Liam flinches) but since the angiogram procedure in which a wire (?) was shoved in and up my other arm, my left feels great comparatively. I think it’s bloody from all of the typing.

Overview of the Angiogram:

The prep took as long or maybe longer than the procedure itself. The team worked incredibly efficiently and with very few words through the entire procedure. So impressive.

During the angiogram I had to:

– ditch my stolen (and favorite) hospital pants with the penis hole sewn up so that they could prep my groin – in case they couldn’t use the artery in my arm (the nurses kindly stowed them in a bag for me)

– have new and fancy heart monitor stickers put over specific areas of my body that they had SANDED clean. Yes, sanded. With “hospital grade” sandpaper. WTF!! It burned, as you might have predicted. Nice.

– get positioned perfectly with my head craned to the left so that I could see the monitor (big wall of 4 flat screen TVs that lowered down to eye level for the doc)

– promise to stay absolutely still for the entire procedure (“if your nose is itchy, ask the nurse to itch it”)

– endure freezing on the inside of my right arm (where the carotid artery is, obv). I’m not going to lie, I honestly thought Dr. B.A.L.L. forgot the freezing and was shoving the thing up my arm without it! Made me tear up. But I didn’t flinch.

– accept some kind of delicious relaxant in the port my left arm since the nurse saw my eyes turn into ponds of misery

– watch and learn

Best parts? Warm blankets. Seeing my arteries on the screen light up. The drugs that took the searing pain away.

The Doc’s Analysis:

No sign of heart disease. No blockages. No need for a stent. He showed me the area that is damaged and went to quickly consult with the other cardiologist while I watched re-runs. Mesmerized.

The doc told me that what happened to me is called Spontaneous Coronary Heart Dissection. (SCAD) Essentially there is a sudden tear in the artery wall that blocks blood flow and causes a heart attack. From what I’ve read so far there is no known cause and no known prevention. It’s very common in women. Young, healthy women. Ahem.

Recovery:

Easy part: I had to stay in the cath lab until my pressure cuff could be taken off – about 1 1/2 hours. During that time one of the nurses printed off some info on SCAD, so I was able to understand it a bit better. I will do a lot more reading on it obv, and look forward to hearing from the doc tomorrow and getting the Cole’s notes. Remember those?

Harder part: My understanding from the literature is that the artery will have to heal and I’ll have to do a few things to help that process along. Keep my blood pressure low, don’t stress the heart, that kind of thing. Of course my greatest concern is that this SCAD doesn’t interfere with my breast cancer treatment which continues till January 2019 (thirteen more treatments to go!). Fingers crossed that the cardiologist I see tomorrow (for discharge) will refer me to a cardiologist who will treat me (?) and talk to my oncologist.

But First… I have to see how well this last sleeping pill blocks out my restless roommate’s vocalizations and the exceptionally loud nurses hanging out at the nurses station. Annnd out.

Bit of a Heart Thing

Posted on April 17, 2018 by pioneerintrees

On Sunday I was having a snack (healthy, I will add) after being out for a walk in the freezing rain and scraping off the ice encrusted hot tub lid. I figured I wouldn’t make it to dinner (I was around 3 pm… the time where you know that if you stay hungry, you’ll be so ravenous during dinner prep that you’ll eat half of everything you chop up). Mid snack I found myself experiencing some chest pain, coupled with pain between my shoulder blades and also pain down the backs of my arms and into my baby fingers. Not little pain. Serious pain. Out of nowhere. My thought process went like this:

– am I having an angina attack … or something? Am I stressed? Did I pull muscles in my arms when scraping that ice?

– I said “calm the fuck down” to myself, even though I felt perfectly calm.

– I thought hmm. I wonder if I’m having a heart attack? Well, if so, I’d better have a shower.

– so I had a shower. Nervously. And quickly.

– pain still there a bit, but better, maybe I’m ok? Lay my chest on the bathroom counter. Calm the fuck down. Breathe.

– wondered … is this caused by the Herceptin? I’d better look that up. (Google search ensued) No connection to chest pain. Hmmm.

– back to snack area, had another episode … hurting again. Wondered – am I allergic to avocado?

– decided I should likely go to the hospital – didn’t want to scare the kids.

– went upstairs and quickly packed a bag with practically all of my technology, a book and my wallet

– decided that it would be stupid to drive myself and not tell anyone – I would get serious shit for that from … everyone

– texted Paul and asked him to bring over the ribs now. And maybe he would need to drive me to the hospital. Now.

– told the girls I wasn’t feeling well – that I’d text them – and that I would be ok … (Annie looked traumatized.)

– figured I’d be fine by the time I got to the hospital, but that I should still go, even though it was in the middle of an ice storm. Fine.

What happened at Emerg – Day One:

I sat in chairs for a bit as there were no receiving nurses in their little booths. The lady who came in behind me was having a hard time keeping her young daughter awake (she had hit her head) – so when the nurse finally came out I told her to go first. Got checked in eventually, put on a face mask (since she made me).

I was ushered into a little room for an ECG. I took off my jacket and sweatshirt I realized that I looked a bit like a skinhead – all in black with my Doc Martens (for the icy roads). Had Paul take this pic …

Skinhead Halloween costume — It’s a keeper.

Then some blood work and into an exam room to wait for the results of the ECG and blood work. Eventually saw a doc who did a history and told me that everything looked fine in the tests so far. Went to the “lounge” to wait 3 hours till I could do a repeat of the ECG and blood work. Waited. It came back showing elevated levels of Triponin which is a marker of a heart attack. It can go as high as 40 … once it’s over 40 it’s considered a “massive heart attack” and they don’t measure it anymore. My first test was a .1 which was why no one seemed too concerned, second test was a 3 which showed that something definitely happened. (Eventually these markers went as high as 9.7 before they came back down again.)

So I had a heart attack. My head was spinning a bit.

I was put in a different room in emerg where the doc asked me if I still had any pain. (Everyone was taking it more seriously now.) I told him that I had some pressure in my throat and carotid (neck) but that I wouldn’t call it pain. He just stared at me. I guess I’ve become so used to discomfort with the chemo side effects … a bit of pressure in the throat is no big deal. He gave me some pills to thin my blood. And some big huge potassium pills – had to break them in half. Lots of pills.

Oh, and some morphine. I said I didn’t want any thanks. They said it was important to take away the remaining pain in my throat and carotid – but also because it also acts as a vasodilator, which is important apparently. Once high as a kite I was much less upset about having a heart attack. Go figure. Saw the cardiologist who had a great handshake, the same haircut as me and explained that I’d need an angiogram. This was the quote of the day: “Dr. Ball? B. A. L. L.?” (Said morphined up Janice. Deanne thought it was hilarious.)

Transferred to my the ICU at 1am. Much quieter there. Sleeping pill. Annnnnnd out.

What happened at the ICU – Day Two:

I lay in bed all day waiting for the angiogram. Had a muffin that Paul got me at Tim’s – the Hospital food was not quite appealing enough…

Cereal for the elderly — *This begins to look good when you’re not allowed to eat anything …*

Wasn’t able to eat anything after 10 until after my procedure was done. We all placed bets on when we thought it would happen – one of the nurses was hopeful with a 1:30 slot – Michele went long with 5:00. No one won since they couldn’t fit me in. I know it’s a good thing that I was low on the priority list for an angiogram, but being hooked up all day in bed (and hungry) kinda sucked. And so many things attached to my body … heart, finger, wrist. Yeesh.

Needle and the damage done — Necessary. Evil.

Highlights of the day included a visit from Michele and Deanne where we suddenly realized that Paul and Michele were dressed exactly alike. Which we found outrageously amusing.

Quote of the day: “You’ve kind of had a shit year.” (Deanne) … seemed a lot funnier in the moment.

Later a visit from Alison when we determined that yes, I could knit if I put the oximeter on my toe. Works like a charm. Called Bree and Annie to have them find me a Zauberball and some needles to be delivered the next day. Excited!

Toe jam — Good thing I have long, skinny toes!

Sleeping pill. Annnnnnd out.

What happened at the Hospital – Day Three:

After a breakfast of grapes had a visit from my 2nd cardiologist (who I also met yesterday and his name is impossible to spell, I will add). He confirmed that this regimen of pills will be my “new normal” (minus the needle they put in my belly at night – I don’t have to do that one at home). He explained that I’d be moving to Telemetry which sounded to me like a Hogwarts class (he didn’t laugh). He told the nurse to get me up and moving HURRAY! And he explained what will happen with the angiogram – that if there is a blockage in the vessels they will put in a stent right then, but if there are several they will not do open heart surgery since I’ve just had chemo (ok, …. was that a joke? … he didn’t laugh..) I filed it under ‘that’s good to know’.

So I’m signing off now … will post again after the angiogram. So exciting, this life of mine! Stay tuned…

Recovery Looks Like a Y

Posted on April 12, 2018 by pioneerintrees

Well, this is my first “week off” from treatment since January (over 3 months ago). When Shelley sent this text on Wednesday morning I panicked a little bit at first …

text from Shelley — *I just love Shelley cookies!! Hoping for the PB and m&m ones …*

I’m DONE chemo (all 12 weeks of it)!! I still am in treatment (it’s not over till it’s over) since I continue with Trastuzumab every 3 weeks until January 2019 (brand name is Herceptin). But Trastuzumab is no where near as toxic as the chemo. I can function with it. I wrote about it in an earlier post so I won’t bore you, but as a quick recap, Trastuzumab – ok, let’s just call it Herceptin from here on in – is a targeted therapy (not like chemo that annihilates every growing cell). It’s an antibody that blocks the protein that causes HER-2 positive cancer cells to grow. A revolutionary discovery. The guys who discovered are total heroes – they were unwavering in their beliefs that there were cancer cells that overproduced certain proteins – but they couldn’t get the finances and research support to prove it. Before Herceptin was discovered, this type of HER-2 positive cancer essentially killed women … and fast. Women had a very low chance of survival. This drug changed everything. Dennis Slamon and Axel Ullrich. Thank you. And thank you to the goddess at Revlon who was diagnosed with breast cancer, heard about these two and proceeded convince Revlon to fund their research to the tune of 13 million.

diagram — *How is this helpful?? Seriously don’t understand it.*

The one rather nasty part of this very positive story is that Herceptin causes heart damage. I have to have a MUGA scan every 3 months to be sure that my heart function is not being compromised. And I have to watch for signs of cardiac distress. Like passing out.

What Happens in Recovery?

Basically, I have to heal from the effects of the toxic sludge that was poured into my body. I also need to heal the tissues and muscles on my chest, expand the range of motion. That kind of thing. And at the same time I need to keep my heart strong so that it has a better chance of not being negatively affected by the Herceptin. Sounds like a walk in the park. (That’s May 6th folks… in case you forgot!)

What’s Happening So Far?

On the outside I def look like a cancer ~~victim~~ patient. I’m bald, pasty, have minimal eyebrows. On the inside I’m fucking tired! My nasal passages still bleed and crust up. But I’m feeling better. I don’t notice a change every day – not that kind of thing. I just notice that:

my guts don’t hurt
I can eat tomatoes now (spicy stuff still burns, sadly …)
I don’t have mouth sores
I don’t have to take Senekot to poop

How am I Facilitating my Recovery?

Well I am tired a lot so I try to rest. L. M. A. O. Ya so, I’m not just sitting around waiting to get better. None of that shit. I want to be better NOW! Lucky for me, my cousin Cheri is a prof in the Kinesiology Dept at the U of Windsor who is researching the relationship between recovery from cancer and exercise. (Yep. That’s my cousin! Doing it all for me! LOL) She was very quick to tell me that research clearly indicates that exercise offsets some of the detrimental cardiac and vascular effects of Herceptin (yes – the biggest side effect is a weakening of the heart). Here’s a great quote she sent me:

“Most impressive of all, moderate to vigorous intensity progressive exercise training prevents recurrence and death from breast and colon cancer. The overriding message, is that exercise training is beneficial.” – American College of Sports Medicine 2016.

Ya. So that means I HAVE TO EXERCISE! (oh, and I love it soooooo much…)

Here are the guidelines that she has sent me (a combo of suggestions from Cancer Care Ontario and the American College of Sports Medicine):

aerobic exercise (aka cardio):
- 150 minutes of accumulated moderate intensity aerobic exercise (seems reasonable till you figure that 150 min is more than 2 hours … just sayin’)
- using large muscle groups
- spread over 3 to 5 days / week (so that’s 30 – 50 min of cardio at a time … gak)
- I can be biking, walking, swimming … as long as I have a noticeable increase in breathing and sweating while still being able to talk. No gasping or falling over either.
resistance (aka weights):
- 2x / week (that’s feeling more reasonable)
- 8 – 10 muscle groups (8?? 10?? what?? I’m good with biceps, triceps, shoulders, back, chest. That’s 5. Oh dear.)
- 8 – 10 reps, 2 sets (simple. It’s the number of muscles that’s the problem.
- can use free weights, weight machines, isokinetic machines (ummmmm whaaa?), resistance bands, circuit training (no thanks if this involves me pushing someone sitting on bench or something daft like that), functional exercises (like splitting wood??)
- if combined with aerobic session, I can scale back on my aerobic exercise (20 min max) HALLELUJAH. Must. Do. Weights.
flexibility (aka Yoga):
- 3x / week
- 20 seconds / stretch, 2 – 4 reps / stretch
- static stretches of hips, knees, shoulders and neck
- This is TOTALLY manageable. I can watch Netflix and stretch like a pro.

Do I want to do this? No. Do I have to do this? Yes. So, motivated by my fitnfreakinfabuless friend Kate, I started my exercise regime 6 days after my final chemo. Lemme tell ya, I’m no spring chicken, but I can still kick some exercise butt! For example, today I did a 1 hour Hatha Yoga class at the Y (just slight tenderness here and there), yesterday 30 min on the treadmill with about 1 minute of RUNNING (and I nearly collapsed trying to push the arrow down button), the day before 40 lengths of the pool (aka 1,000 metres). I love the feeling of the water on my bald head by the way. Very cool perk to baldness.

Sadly, part of the chemo aftermath is the feeling of exhaustion. Which I hate. But it’s still there even with the hating. Go figure. So the trick is to do this exercise stuff in the morning since I have very little energy by 2 pm.

See you at the Y!

Comfortably Numb

Posted on March 27, 2018March 27, 2018 by pioneerintrees

Just when I am planning on walking for Hospice, I am dealing with a classic Paclitaxel side effect, nephropathy. I thought I’d dodged the bullet. Turns out that this side effect takes a while to show up … sometimes it doesn’t arrive until months AFTER your chemo is done! Bollocks.

What is nephropathy?

Essentially, damage to the peripheral nerves – those found in the fingers and toes. This results in numbness and tingling in the hands and / or feet. It feels like my fingers are warming up after being in the cold for a long time … not quite the burning feeling of thawing after frostbite – just the numb feeling. On the toes it feels weird every time you walk. Some people lose all feeling in the balls of the feet. Others have PAIN. Oh please no. NO NO NO

What can I do about it?

As soon as the numbness and tingling showed up a few weeks ago, I told my Oncologist. She reduced my chemo dosage by 10%, adding offhandedly, “this isn’t the most important part of your treatment anyway. The Herceptin is the important one.” WTF ARE YOU TALKING ABOUT RIGHT NOW??? I’M DOING CHEMO AND IT’S NOT IMPORTANT?? I nearly had an aneurysm.

Well reducing the chemo by 10% wasn’t enough for me. What else could I do??

So of course I started to research ways to prevent neuropathy. I found out a couple of things.

Thing One:

“A small study” in October 2017 that was published in the Journal of Cancer Institute showed that treating with extreme cold can prevent neuropathy. (This is referred to as cryotherapy.) In the study they used frozen gloves and socks. So I thought – I can do that!! Small study be damned. Of course mine melted in the cooler bag… so I got ice out of the machine in the chemo suite and put it in a couple of ziplock bags. Yep. Ice. So now when I go in for my chemo, not only do I chew on ice (to prevent mouth sores) but I put bags of ice on my hands and feet. It’s really pleasant.

The second week one of my ice treatment experiment, one of the nurses gave me chemo transport bags that have a handy sleeve in the side. I could just slide the bag over my sock! No more sticking my feet in my cooler bag…

The premise is that the ice tightens up the blood vessels in the hands and feet – making them so small that the chemo won’t go in them. Makes sense to me.

Of course my nurses have NEVER had anyone do this. NEVER. Ok, the study was in October 2017. And it was one study. But don’t oncologists get briefed on new research?? ACK! I get that the treatment is important … and so it makes sense that it is the focus of the Oncologists and nurses. But why can’t we also work on mitigating the side effects?? Do they not realize how incredibly CRAPPY it is to go through chemo??

Anyway. Rant over.

Thing Two:

The next thing I did was research what can PROTECT nerve endings. Here was the response to an early hit on Google “It is thought that vitamin B6 can aid in reducing neuropathy by maintaining the covering on nerve endings.” Well now. That’s news! So I started to read about Vitamin B-6. Turns out that there are not a whole lot of foods with B-6 in it … and taking supplements makes the medical community flinch since too much B-6 would be BAD. So I’m working on getting my daily dosage through:

sunflower seeds
prune juice (we all know what that will also help with! … but OMG the taste!!)
salmon (wild is VERY high in B6)
avacado
oatmeal
banana

I’m getting tired of these foods. Just sayin’

What have I noticed?

Since I’ve been packing my extremities in ice and eating a handful of B-6 laden foods my neuropathy has almost completely disappeared. Of course, my chemo has been reduced by 10%, so it could be because of that entirely. But I’m going to do everything I can to prevent it. I need to be ready to walk on May 6th. (shameless plug … )