Month: January 2018

Making it Work > 2018 > January

Games

Posted on January 25, 2018 by pioneerintrees

Up for a game? It’s word association game. Easy and fun. (Mostly for me, but whatever…) Ok, so I’m going to say a word, you’re going to say a word. Easy. Trick is, you have to hold it in your head. And when you’re done reading, post it in the comments. K? Thx. (Maybe get a piece of paper right now. lol)

Are you ready?

First word. CHEMO. (Hold it in your head / write it down … whatever you have to do … but you can’t change your word, ok? Can’t.)

Note: I’m playing this game with you because I watched an interesting interview the other day. The interviewer was asking 4 sets of twins questions about themselves – including how they think. She played this game with each set and it was rather amazing how many they answered the same. It got me thinking about how people think about chemo.

The Game I’m Playing

This post is going to explore the game of getting this chemo thing right – the balance between managing side effects well and not managing them well. The getting it right. The trial and error. The game.

Why? I’ll tell you. Yesterday I had my 3rd treatment. (Yup, I’m 1/4th done the chemo! WOOT WOOT!) The day before, in my obligatory pre-treatment meeting, I talked to my Onc (that’s short for Oncologist) about cutting back on some of my pre-meds. Why? Because I think I’m smarter than her?? NOOOOOOO. Because I’M A PERSON THAT DOESN’T LIKE TO TAKE DRUGS. I perseverate about taking an Advil, for Christ’s sake!!

You might wonder … why don’t you just do what they say? Take the drugs? Answer:

I want to be an active participant in my health care.
I want to maximize the good effect of the drugs while minimizing the negative.
I don’t want to suffer unnecessarily.

How do I Play this Game?

I have to know what the drugs do, then analyze the effects they are having on me, and then see if I can tweak it. I talked about these drugs a bit in a previous post, my apologies. But now I need to say more about them. Here’s my current analysis:

Drug #1 – Paclitaxel (chemotherapy)

common name: Taxol
purpose: effectively kills breast cancer cells
visuals: clear fluid in a drip bag that comes out of a special door and is checked twice by nurses and once by me
dosage: determined by my weight and height – I have ZERO CONTROL over this dosage and treatment plan
repeats: 12 (once / week for 12 weeks)
what it does to me:
- triggers the puke response in my brain which to get it the hell out of my body (so far this has resulted in a very sore gut, as I’m not a puker)
- goes to all fast growing cells and KILLS THEM – cancer, lining of stomach, hair, lining of esophagus, skin, lining of mouth, lining of nasal passages, toenails and fingernails, eyelashes, eyebrows, pubic hair, leg hair (ok you get the idea)
- heartburn
- nasal cavity pain
positive side effects (aka silver lining): smooth skin, lots of time for reflection, meet new people, look at life differently, increased respect for modern medicine, weight loss (ok, this is hypothetical – it has not happened)
worst thing: side effects are cumulative – the drug is not fully eliminated each week – I will feel worse and worse
word to best describe it: toxic

Drug #2 – Diphenhydramine (“pre-med”)

common name: Benedryl
purpose: prevents allergic reaction to the solvent that is in the chemo (I know, right?)
visuals: long thin hot pink capsule (taken orally just before chemo)
dosage: 50 mg (2 pills)
repeats: every time I have chemo (12 weeks)
what it does to me: can’t talk properly, wobbly, incredibly sleepy, needed an assist to the washroom
postive side effects: basically stoned
my response: cut it back to 25 mg on Treatment 2
result: better
word to best describe it: loopy

Drug #3 – Ondansetron (“pre-med”)

common name: Zofran
purpose: prevents nausea & vomiting by blocking seratonin (which causes vomiting)
visuals: oval beige pill (taken orally just before chemo – and I have to remember to bring it)
dosage: 16 mg (2 pills)
repeats: every time I have chemo (12 weeks)
what it does to me: causes me to not have a shit for at least 3 days after taking it and then it’s HELL, PURE HELL
my response: cut it back to 8 mg on Treatment 3
result: earlier gut pain, face is a bit tingly (remember it? … that slightly queasy feeling?), too early to tell you about poops but you can check in with Annie at any time, as I send her poop emojis
word to best describe it: questionable

Drug #4 – Ranitidine (“pre-med”)

common name: Zantac
purpose: prevents heartburn by decreasing the amount of acid that the stomach makes
visuals: clear fluid in a drip bag (I got more OTC – over the counter – as well as a stronger one with a script)
dosage: no idea
repeats: every chemo
what it does to me: mild headache (not sure it’s from this particular drug, but it’s the first side effect listed)
my response: enjoy it while it lasts (about 36 hours)
result: watch my diet closely
word to best describe it: awesome

zantac — *This one I NEED, I know it works, and it doesn’t seem give me other bigger problems.*

Drug #5 – Dexamethasone (“pre-med”)

common name: Decadron
what it really is: corticosteroid
purpose: fights nausea, hypersensitivity
visuals: clear fluid in drip bag
dosage: 20 mg
repeats: every chemo
what it does to me: sleeplessness, hyper in first 48 hours, water retention, stimulates the appetite
what studies say it does: early pre-trial studies demonstrate that Dex is contraindicated for Paclitaxel! WHAAATTTT? This means that the more steroid, the less the Taxol works. So this is a big problem for me!!!! I’m going through this and the Dex is making it less likely to work???
my response: reduce the steroid as much as possible!
result: cut it back by 1/2 to 10 mg on Treatment 3
word to best describe it: danger

dex problem — My onc rolled her eyes when I asked her about pre-trial studies that indicate that too much steroid reduces the effectiveness of the Paclitaxel. WHAT?? AN EYE ROLL?? But then she said she’d reduce it by half. HUH?? Maybe she doesn’t like it when patients ask questions and want to take control of their own health.

Conclusions:

It’s a game of measures. How can I get the greatest effect of the Paclitaxel (chemo) with the least amount of suffering?
It’s challenging, this constant self care!!!
I bet most chemo patients don’t know half of this shit.
Oncs are human. They get annoyed by patients with questions and demands. (Do I do that with parents who push back?? Do I roll my eyes?? Jesus God I hope not.)

Your final task:

Now that you know more about the game of measures, I’m going to give you another word, and you have to say the first word that comes to mind. Ready? (and yes, that means you’ll have two words…)

CANCER

Now post your two words! Thx for playing!

Thin Skin Begins

Posted on January 20, 2018 by pioneerintrees

In an earlier post I mentioned how the killing off of cells in the esophagus and stomach can result in heartburn. Turns out that there are more cells in the gastrointestinal tract that are affected. I’m sure you’ve heard of the mucous membrane. It lines all body passages that communicate with the air, such as the respiratory tract, and have cells and glands that secrete mucus. Makes sense.

When you have chemo, the mucous membrane is affected. Bad things happen. Smart people call it mucositis.

The part of this lining that covers the mouth (oral mucosa, go figure), is one of the most sensitive parts of the body and is particularly vulnerable to chemotherapy. You don’t want oral mucositis. Open sores, bleeding gums, pain, pain, discomfort, hard to eat, yuck. So I’ve decided to pass on that side effect.

An ounce of prevention …

I’m doing some simple things, like:

changing to a soft toothbrush
using a less harsh toothpaste
swishing twice / day with flat soda water (you can also use baking soda and water, but YUCK!!)
avoiding foods that would irritate the mouth (spicy, acidic, you know all about it…)

I’m also doing something called “oil pulling”. It’s an Ayurvedic practice that is simple and boasts very positive results for oral hygiene. I’ve been doing it since Christmas when my big brother told me about it – and I have already noticed a difference in how my teeth feel.

How to oil pull: put up to 1 tablespoon of an oil such as sesame, sunflower or coconut in to your mouth (ok, I use about 1 teaspoon) and actively swish it / pull it through your teeth for 20 minutes. No swallowing! Then you spit it out (not in the sink or toilet as it will harden) and rinse with warm water, spit that out (not in sink or toilet), and then brush and floss (gently in my case). I use coconut oil because it also has lauric acid in it, which is apparently very good. Plus it tastes better (not that you taste it, to be honest, but I imagine that it tastes better).

At first I could only do 5 minutes. But I worked up a few minutes each day and now I have no problem with 20 minutes each morning. And it’s amazing how much I can get done while I’m swishing … light the furnace, chop some wood, make the bed, …

So far my gums are healthy and I have no indications of any sores developing. I’m sticking with it!

Sniffle

My nose, however, is starting to suffer. The skin cells are not reproducing any more, the hairs that normally trap the mucous are disappearing, and the membranes are thinning. This results in:

dry, crusty nose – feels like there are scabs in there ALL THE TIME
bloody bits and smears and chunks in the mucous coming out of my nose (I have a photo, but it’s just too gross)
sniffling
did I mention that it feels really dry?

So I’m working at increasing the humidity in the house – water on the woodstove, vaporisor by my bed. And I LIBERALLY coat the inside of my nose with Vaseline.

Apparently, if my nose does start to bleed, it may take a while to stop, since my platelets are affected by chemo. So NO NOSE PICKING!

Butt wait, there’s more!

On a related note, remember how I was talking about how toxic I am? The other day I search the Drug Monograph for Paclitaxel in order to see if there are contraindications for the use of essential oils and medical marijuana (that’s for another post, so sorry). There is a section called “elimination” that breaks down exactly how the Paclitaxel is getting out of my body. It says that there are “high concentrations found in bile; 71% excreted in feces in 120 hours”. OK NO WONDER MY ASS WAS ON FIRE!!

elimination — *This drug monograph is 14 pages long. Very informative.*

And so you can understand why this mug is my companion, and why I send poop emojis to Annie so that she can be updated. (She loves it. Really.)

poop mug and me — Sometimes there are fireworks.

Meanwhile, my head is feeling a bit numb / tingly. I think my next post will be about alopecia. Just a guess.

Heartburn Doth Strike

Posted on January 14, 2018 by pioneerintrees

Heartburn appeared pretty much as soon as the cocktail of “pre-meds” wore off (one of which was a dose of Zantac). I felt really good on treatment day (apart from being high as a kite from the Benedryl), and the next day too. Then after a fab dinner of chili, Liam and I went to his Grade 9 Open House where I proceeded to SUFFER.

As a consequence I am now armed with heartburn information and meds. Here are the highlights:

What is heartburn?

It’s often called Acid Reflux. Basically it’s when acid from your stomach that is there to digest your food goes starts to hurt you. Generally speaking, the acid in your stomach splashes up into your esophagus (food tube). There might be too much of it, your stomach might be too full or the muscle that acts as an elastic band between the stomach and esophagus might be too weak.

The official name for it is GERD (Gastroesophageal reflux disease) which is a disease that affects the muscle I was talking about. The official name is the Lower Esophageal Sphincter (there is more than one, sphincter! Ha!). As I mentioned, the LES is between the stomach and esophagus – it’s a band of muscle. GERD can also happen to pregnant women since the LES is more relaxed due to all of the hormones. Also, the baby pushes up against the stomach which drives food up through the LES. (I ate a lot of Tums.) Other folks who have a hiatal hernia can get GERD. That’s where part of the stomach and esophagus get pushed up into the chest wall where it doesn’t belong.

Here’s a diagram that I drew for you (including my recent incisions and my portacath too). It shows you where things are:

Why does heartburn affect people on chemo?

Chemo targets cells that divide at a really fast rate because that’s what cancer cells do, they multiply and take over and wreak havoc in the body. So any other cells in my body that also rapidly divide will be KILLED by the chemo. And the cells in the lining of my stomach and esophagus, which protect my digestive organs from acidic stomach acid are in the list of fast growing cells.

So basically, during chemo any stomach acid in my digestive system is going to hurt me because the protective coating (cells) are being killed off. I don’t have GERD per se, but during chemo I will have the same symptoms as GERD. Make sense?

What can I take for heartburn?

This is interesting! There are 4 different ways to go:

Tums, Rolaids: These are acid neutralizers that contain calcium and act as a buffer between you and the acid – but they can actually cause more acid to be produced once the barrier is gone (called acid rebound). Use occasionally.
Gavisgon: This contains alginates (derived from algae) that also act as a barrier (coats the stomach). Very cool. Makes a “raft” and prevents the acid from getting up and out of the stomach. I think I will try the raft.
Zantac: H2 receptor blockers (such as ratinidine) that reduces the amount of acid from building up but increase the risk of cardiovascular problems and osteoporosis – GAH! And I bought this!
Nexium, Prevacid: Getting stronger now – prescription strength! These are “Proton Pump Inhibitors” that also prevent acid from forming – they seem to be like Zantac but are stronger, and not for occasional heartburn. These are for people who suffer badly from GERD and their esophagus is getting damaged. Lots of side effects. Avoid avoid!

What can I do to avoid heartburn?

Being a person who likes to avoid taking drugs, I am aiming to prevent heartburn rather than having to take the medications listed above. (Of course I WILL take it if I have to – I’m not into any extra suffering at this point!)

Prevention tips 1 and 2:

eat smaller amounts at a time
eat more regularly (this is a LOT harder than it seems)

Most importantly though, I have to stop ingesting:

caffeinated tea and dark chocolate – ok, anything with caffeine
wine / alcohol
oily / fatty foods (don’t even talk to me about this category, I can barely manage the first two)
citrus
tomato based foods
spicy foods
garlic & onion
more good stuff
more good stuff
more good stuff

Basically, I’m going to eat BLAND food, very regularly, with lots of water. Oh boy.

What is the silver lining?

Let’s just be clear. When people mention the “silver lining” to a shitty situation, it’s akin to saying “there are plenty of fish in the sea”. Just shut up already. But if I had to pick the silver lining for this one, it’s

Ok I can’t think of one.

Toxic

Posted on January 13, 2018 by pioneerintrees

Chemotherapy medicines are toxic. So therefore, when you’re receiving chemotherapy, anything that leaves your body is toxic. You have to be careful where it goes and who comes in contact with it.

Naturally there are some basic safeguards – some that make tons of sense, some that are perhaps a bit surprising. Here’s the basic list:

1. Pee

You may not think that this is a big deal. Just flush it down and Bob’s your uncle (I know, he IS!). There are actually rules to the flushing. First one is to sit. Not a problem for me, as I always do. But dudes have to sit to pee. Not that that has anything to do with me, but I tought it was notable. Secondly, put the lid down before you flush. Who does that? Last, and the most disturbing to me, double flush!

This may not seem upsetting to anyone … but I’m an environmentalist. Having grown up at a cottage, I’m already conditioned to NOT flush unless it’s very very yellow & stinky or brown. (Note: At home I do flush after I pee (promise), but I flush once.) So I find this to go against my principles. (I can tell you this, though, if I’m peeing during the time that I am receiving treatment at the cancer suite, you can bet I’ll be flushing twice! People track you with their eyes and likely listen for the double flush.)

The other thing about pee is that when you’re female of a certain age, it tends to be less able to stay in it’s correct location when coughing or sneezing or laughing or jumping on the trampoline.

I have been told that each time any pee gets on me I have to wash thoroughly (probably twice since that seems to be the norm) and if it gets on my clothing or sheets I have to wash them TWICE. Separate from other items. Geez. This seems like a lot of work. (Am I going to be wearing Depends?)

2. Sweat

I told the nurse that I don’t sweat. She raised her eyebrows as if to say “reeeeaally” or “you don’t sweat YET”. She then asked about hot flashes and night sweats. Hmm, well, I don’t sweat much …. ok, I’ll wash my sheets more often. Fine. (But I’m not washing them twice.)

3. Vomit

I’m hoping I don’t have any issues in this department, but if I do, I have to follow the same rules as above – two flushes two washes. Of anything it touches. (I think I’m in denial on this one, but I’m not a puker.)

4. Stool

Who says stool?? It’s POOP, people!! I don’t think this will be a problem at all, since I haven’t generated very much since my 1st treatment. I know. It’s not a good thing. I’m on it …

poop inducers — *Pear juice, herbal tea, bran muffins and a supportive mug. Bam!*

5. Vaginal Fluid

Hold the bus. What? Yep – it’s toxic. So sex must involve covering it all up. Uh huh. A condom… and for other activities enjoyed by women, a dental dam. Ya, that’s not happening.

What’s not on the list:

I asked the nurse why saliva is not on the list. I am going to try to reiterate what she said, but it didn’t make any sense to me so I’m not going to sound convincing. It’s ok because it is less likely to come in contact with someone. Um … what if I cough? Not enough. Or spit on someone? Funny look. What about kissing? Not enough. (Ok that woman must be a dry kisser.) I let it go.

Some of the Additional Rules:

Anyone who deals with my “body fluids” has to (obviously wash it off their body asap, twice?), wear gloves and be given a medal.
Any “body fluids” needing to be cleaned up are collected with paper towel that is then sealed in a plastic bag and put in the garbage – which is then sealed. (Of course I’m wondering what will happen if I toss it in the fire instead …)
If any of my “body fluids” get into my eyes or someone else’s eyes (ok … what??), the eyes must be flushed 2 or 3 times. Hard to get that image out of my mind. Projectile vomit?

Good times, people, good times.

And yes, you can visit me. Just stand back a safe distance. I’m toxic.

In the Brown Recliner

Posted on January 10, 2018January 10, 2018 by pioneerintrees

Prior to this cancer journey I didn’t pay any mind to the recliner chair. I began to see the light a few days back when I had my information session with a Cancer Centre nurse. Her job was to be sure I understood about the chemotherapy, the side effects, and the procedures at the Centre, but she actually helped me to understand the power of the recliner. Specifically the brown recliner.

What I found out:

– The name of the place that I get my chemo is called “the suite”.
– The chairs for patients are all recliners.
– The brown chairs have a massage feature in them.
– It is chilly in the suite. Blankets are recommended.
– The brown chairs heat up.
– There are less brown chairs than beige chairs.
– Wednesdays are the busiest days (this has to do with Tuesdays being the days that most of the oncologists meet with patients – which happens the day before treatment)
– Since I go on Wednesdays I may not get a brown chair.
– People can bring me food and drinks but they can’t eat or drink with me.
– TVs are all on mute. I must be able to read the closed captioning.
– There is one chair beside every beige and brown recliner … I can only have one visitor who is not eating or drinking.
– The washrooms in the suite are not for visitors.
– I cannot go to Tim Horton’s but I can go and pee with my IV pole. But not with my visitor.

What I noticed on my tour:

– There are 4 sections in the suite, each one assigned to a different nurse.
– Each section has 4 or 5 recliners. A couple of them are brown.
– There were only 6 patients in the suite, scattered in the different sections. All of them were in brown recliners. None of them were talking.
– As I walked through, each of the patients glanced at me with a knowing look.
– Chemo drip bags come through a hermetically sealed window at the far end of the suite.
– There are 2 washrooms. (For patients.)

What I determined:

No picnics. No singing. No visits from loud friends. No way I’m missing out on a brown recliner.

My first treatment is happening while I write this. And yes, I got here early, in hopes of a brown chair. Oh ya, you guessed it … I got one!

My bum is nice and warm.

What I’m Doing in the Chair Today:

Schedule for the today (week 1):

– begin with a “loading dose” of Herceptin (8ml / kg) that lasts 90 minutes (the next doses are not as big … they are called maintenance doses with 6ml/kg)
– They watch me for 1 hour. For side effects, but likely also to see what kind of patient I am … complainer? Rule breaker? Under prepared? No friends? Chatterbox? Eavesdropper?
– Then I get approx 1 hour of “pre-meds” before the taxol. They include 4 things:
1. Oral dose of anti-nausea pills that I have to remember to bring with me each week. Oh oh.
2. Benadryl (oral)
3. 15 min of Zantac drip (coats the stomach, helps with nausea)
4. 15 min Dexamethadrone drip (steroid)
– FinallyI get the nasty stuff, Taxel for 1 hour and 15 min.
– Then I get a ride home at around 2.

Extra Curriculars:

I’ve got a load of things to keep me amused. All the technology: iPhone, iPod, ipad (yes, Apple junkie). Lunch & drinks. Knitting. Journal. Book & magazine. Etchasketch.

Better get busy! Lots to do.

Port Me

Posted on January 8, 2018 by pioneerintrees

Tomorrow I am going to have my toxic drug portal installed. It will deliver all of the nasty chemicals to my cells without any fuss or muss or burning skin. Ahh. How nice! It’s called a portacath, meaning a portable catheter. It’s made up of two parts: a small disk (port) and a long tube (catheter). Hence the name.

Where does it go?

It will be inserted in my chest, just under the clavicle. Each time I go for a treatment – whether it be for the 12 doses of Paclitaxel (chemotherapy) in the first 12 weeks or the Herceptin (the targeted therapy) in the remainder of the year (18 doses) – the drugs will be delivered through the portacath. Nurses can also take blood through the portacath, even though my veins are quite charming and easy to take blood from.

Giving blood — *I think the nurse had performance anxiety. I can’t recall ever having had a drop of blood spill – or it hurting. Serves me right for taking a picture.*

How is it put in?

Usually this procedure is done in Surgical Outpatients and I would be knocked right out, requiring that a breathing tube be inserted. But as I’m obviously an early adopter, I’m having it done in the Diagnostic Imaging department instead with “twilight anesthesia” (yes, I’m the very first one). This means that I will be in a semi-conscious state. No pain, no anxiety, no need for a breathing tube, no memory of what happened. (This last part is unfortunate, because I’d really like to watch if I’m going to be semi-conscious. I have many questions.)

In fact today during my teaching session (in which someone tried to teach me…) I asked the nurse how it’s done and waxed on about my vision of the procedure. She gave me a blank look. All she said was “There are 2 incisions.” Blew apart my whole vision, in which … of course I’m going to tell you … I think that the tube is inserted first – it looks like it has to run up and over the collar bone and then down into the Superior Vena Cava. (Remember that one from Biology class? It’s the large vein that runs in to the heart.) The disk is then attached to the tube, and slid under the skin. A couple of stitches later and it’s all done. But likely that’s not how it happens. If I come out of the twilight I will let you know what I see.

Here is a professional diagram, proving that I am likely very close to being right.

How does it work?

Once it is in my chest, each week the nurse just has to poke the special needle through the skin into the top of the port and start the drip. It’s not inconvenient like a PICC line, which is inserted in the arm and has an external port that you have to look after. Apparently I can sleep on my stomach (although I’m not sure if it will be comfortable) and I can swim with it (you can’t with a PICC line). Plus it will make me look like I have an alien microchip implanted in my chest, and that’s cool.

Why Not be a Wig Maker?

Posted on January 5, 2018January 6, 2018 by pioneerintrees

Well, I’m going to lose my hair. Chemo starts next week and I’m told I have about 10 days before it falls out. So I’ve decided to be proactive. I’m going to cut off my braids, grab my glue gun and make them into a version of a wig. Not kidding.

I was inspired by Scout. On the run, she hacked off her pink tipped and therefore very obvious hair, fashioned two cute pigtails and then plopped a little black toque on her head.

Well if she can do that and still look like a million bucks, so can I. Check it out:

So on Monday I’m going to see Jenny, who has agreed to help me out. She will cut off my braids. (I realize that this could be a delicate procedure … I’ll have to secure the top somehow so it doesn’t unravel.) I’ll set them aside while she fixes up whatever is left on my head (seriously folks, it’s going to be gone in 2 weeks. Who cares??).

Then I’ll hot glue the braids to the inside of a comfie black beanie that I found laying around the house. (I’ll have the exact location of the braids marked on the beanie ahead of time, don’t you worry.) Later on I’ll sew a soft band of something over the hair, sandwiching the braids to the hat. This will help to avoid irritation from the glue and ends of hair rubbing against my bald bald head.

This is what it should look like in the end, when I plop another hat on top.

goofball — Of course I won’t have eyebrows…

So ya, that’s the plan. Handmade wig making. Why not?? FYI, a short haired wig (made with real hair) costs $1800 and long hair is around $2500. Can you believe that?? Omg. I’m going to get me a turban, plop it over my cool skull cap with braids and I’ll be good to go.