Category: recovery

Making it Work > recovery

Irritated

Posted on February 25, 2018 by pioneerintrees

I am a gal who is easily irritated. Years ago when I was a scrapbooker, I created a page called “100 things that bug me”. I’ve attached the page at the bottom so that you can see for yourself. This is REAL. I live my life in a relatively high state of irritation. I think that this is what my friend Sonal would attribute to being “gold”. Whatever the reason, I am constantly having to self talk so that I don’t say something off base / rude when I’m irritated. For example, at the cottage around 8 years ago people were arriving for a long weekend and I said boldly “oh you can put that case of water back in your car – we don’t use disposable water bottles here.” RUDE! But I knew that otherwise it would piss me off all weekend … my punishment is that I still think about it today.

During this cancer journey I have to deal with a LOT of irritants that affect both my body and my quality of life. My solution is to focus on eliminating the irritant rather than trying to ignore it. It’s a basic research cycle that goes like this: identify it, find info on it, try a remedy, write it down, gauge progress, make changes, observe again. It’s entertaining! And it’s currently my day job.

Top 5 irritants (you knew it was coming):

1. Horrific Nose – top irritant by FAR

As I mentioned before, mucositis is a common side effect. The chemo essentially destroys the mucous membranes from nose / mouth to anus. The whole she-bang.

My main focus is coping with the scabbing / bleeding cycle that takes place in my nasal passages CONSTANTLY. There is nothing to stop it from happening, but I found a few things that help manage it:

vaporizer in my room – feels like a rainforest in here sometimes
walnut oil – this was a total experiment – I saw it at Sullivan’s and thought I’d give it a try – you just squirt it up there … so soothing!
Secarus – put it on a Q-tip and rub it inside the nose for some relief (downfall is that you can’t get up there very far) – no more Vaseline … it’s no where near as effective

*Me in my doo-rag. Comfy but questionable.*

Ok, let me reinforce that this side effect is REALLY irritating. This will help you to understand: I try to only blow my nose when the sniffling is bugging even me or when it is completely full of scabs and I can’t breathe anymore. Other times it gets to the point of being so itchy that I repeatedly sneeze which inevitably loosens the scabs. Once they are out it bleeds a bit – I stick my remedies up there and then it begins to scab up again. (Of course my kids hate it when I want to show them the scabs. They are HUGE. Yeech. Gross. Gak.)

2. Poop Trouble

I have never been a good pooper. I listen to other humans (mostly men) offhandedly brag (?) about their morning constitutional and I think REALLY??? In my regular life, pooping has always been directly proportional to how much of the good stuff I ingest (water, veggies and fibre) versus the stuff I like (gluten, dairy, caffeine and junk food). It’s a balance that I had perfected.

Then came the chemo and pre-meds. Constipation is high up the list of side effects for both. My struggles have made me very empathetic of all of my friends who struggle with Crohn’s or irritable bowel syndrome!!

So ya, I am hyper focused on pooping – I take an inordinate amount of pills (see below), and have changed my diet a LOT. Much more greens, dramatically reduced gluten intake (sad sad sad) and more drinking than seems reasonable. Honestly, for a person in education who has spent 28 years never drinking in the daytime since there is no time to pee, this is horrific, the water intake. I mean, seriously. It is BORING!! I have to force myself to drink more. I make a lot of deals with myself. It’s rather sad. But the poops make it worth it in the end. No pun intended.

poop inducers — *These do the trick, but you’re not supposed to become dependent on them. So I only use them prior to chemo and on the night of chemo and whenever I’m in dire straights.*

3. Gut Pain

I was first introduced to the idea of severe gut pain precluding puking when I was a new teacher. It was illustrated by Kathleen, one of my Grade 1 students at the Point. I’ll never forget it. We were sitting in a circle at the carpet – someone was sharing. She suddenly jumped up, ran across the circle clutching her stomach. “It hurts!” she said. I pulled her onto my lap (MISTAKE MISTAKE MISTAKE). Less than a minute later she was puking red hot grossness into my cupped hands (save the carpet!) while I tried to pick her up and get us to the bathroom.

Gut pain is real. For the majority of people it comes right before puking. But I’m not a puker (unless related alcohol poisoning or food poisoning). I think I’ve puked less than 10 times in my entire life. With the chemo I have gut pain – it can be ‘kicked in the stomach’ gut pain or ‘low level constant aching’ pain. Either way, I have it for approximately 3 days in my 7 day chemo cycle. Irritating.

Three of the pre-meds I take work against nausea (Ondanestron, Dexamethasone, Raninadine – more about them in an earlier post). So I’m numb for a day and a half and then the gut pain comes. I have more of these drugs that I can take if I wish but they are very bad for constipation. For this reason I’m wary of taking ANY more drugs than I have too – their side effects are often not worth it.

Of course a drug that manages nausea well for chemo patients with relatively few side effects is medical marijuana. I talked to both my oncologist and GP about it. You’ll never guess – they were reluctant to give me script (“I can give you other drugs for that.”)! Such a surprise. My GP didn’t flat out say no – but prescribed Nabilone which is a synthetic cannabinoid that mimics THC. Work exactly the same but is man-made and provided in doses. I think that this gives the medical community the feeling of having more control over its usage. Still – seems strange not to be able to use a very helpful and naturally derived drug. I mean… I have SO MANY DRUGS from this journey that are far more problematic in terms of addictions and harm to the body (e.g., Oxycodone, Percoset and Tylenol 3’s from my bi-lateral mastectomy). Clearly there is a need for research on the use of medical marijuana so that we can get on with treating people with the least invasive drugs. Ridiculous!

The negatives with this particular solution is that Nabilone takes a while to kick in, I can’t drive and the dry mouth is irritating (I drink enough water already, for Christ’s sake!). But the gut pain leaves completely – as well as any heartburn. Bonus!

4. Kibosh on Reward Eating

I’m a person who is highly motivated by the prospect of food. I know it’s wrong. Food should be fuel. You should only eat what you need. You should only eat when hungry. BLAH BLAH BLAH.

Prior to chemo the following 3 reward schemes defined the boundaries of my poor eating habits:

the chips / junk food reward
- used to be when the kids were finally in bed, now it’s any time after dinner (On a daily basis, yes! Big problem, I know…)
- when I drive long distances (very motivating, keeps me awake – chewy candy is the BEST – makes the trip enjoyable!)
- when writing or reading report cards (the pain of it doesn’t stop when you’re in Admin…)
the Starbucks / crap drinks reward – “you deserve this because you are an entitled white person who can afford this ridiculously expensive high calorie drink with a stupid ass name” – so wrong, but somehow helps you get through meetings at the Big House much more easily
the alcohol reward – for just about any issue or getting through a tricky day at work or a long week, or a crisis, or a tragic Netflix show – oh how I miss a glass of wine at night!!! sad sad sad

Why can’t I eat this stuff? I can’t eat lots of sugar because it is too harsh on my taste buds – feels like I’ve burnt my tongue on a hot tea. Same with salty snacks. Chips will rip holes in my face. Alcohol is dehydrating and burns all the way down. Starbucks treats are high in caffeine which is dehydrating. (Remember, dehydration will slow down the poops even more…)

So no more reward eating. Life is not very much fun without all of my typical vices. Truth. On the flip side, ice cream, home made juice popsicles and frozen yoghurt are options that also make my throat feel so much better. So I’m enjoying them A LOT.

5. Tiredness

This is just starting to happen now. The treatments are piling up, so my legs feel a bit more leaden and my overall energy is lower. Naps are happening. It’s weird. It’s hard to get anything done. Dinner is a drawn out affair with NO multitasking (omg) and I’m often bitchy by the end. I am best to prep dinner in the morning or the kids will suffer (In this way, I think that this side effect is actually most irritating for my kids!) After dinner I lock myself away in my rainforest and sit on my ass. Yoga in the evening is beyond me now. Being tired is very boring.

Coping

So ya. This chemo thing is irritating … but I’m surviving it by being proactive and with self talk. Get over yourself! You’re not dying. Shut up already! (I reserve these for when I’m having a lot of pain / discomfort.) Keep going! You can do it! (when climbing flights of stairs at the hospital) I also do visualizations of the spring and summer when the chemo will be behind me.

This too shall pass and I’ll once again perseverate over the small stuff. And eat chips. Crunchy crunchy chips with salt and vinegar.

Scrapbook page — *Ya, … the small stuff.*

Wigged Out

Posted on February 17, 2018 by pioneerintrees

There’s only a ‘wafer thin’ layer of hair remaining on my head. My scalp is strangely tender … the feeling that you have when you’ve had something pulling on your hair for a long time and then it is released. I believe that it’s the tell tale sign for impending baldness. So this week I decided that I need to get serious about wigs.

I’m taking the most positive approach I can muster towards my “chemotherapy induced alopecia”. First of all, it’s the only side effect that doesn’t cause me a great deal of physical discomfort so I’m thankful for that! And while in the spirit of glass half full, I’ve decided that baldness provides an opportunity for me to explore different looks, have some fun! Freak people out!

I have learned that in the wig world there are essentially 3 choices: synthetic wig, human hair wigs and wigs that are a combo of the two.

Synthetic Wig

The synthetic wig is reminiscent of Barbie hair. This is generally not a great feature in my opinion, as I found Barbie hair to be infuriating to deal with as a child. Think static, tangles, difficult to brush. However, synthetic wigs are permanently styled so you don’t have to fuss with straightening / curling etc – you just give the wig a generous shake, pop it on your head and you’re good to go. (Just remember not to stick your head near the woodstove or oven. It will melt.) The decent ones start at about $250.00

Human Hair Wig

The human hair wig is better made and looks (obviously) more natural. You can get them made to match your exact style and colour. However, human hair wigs need to be styled and washed just like human hair – regularly. Looks better, but involves WAY more maintenance. What sealed the deal for me is that they start at over $1000.00 each. Since I need to feed my children, it’s really not an option. Plus I’m lazy in the hair styling department. Let’s be honest.

The Results of my Shopping Expedition

I headed to see Bridget at “My Left Breast” and began trying on wigs. (I had learned quite a few important guidelines to follow for putting on and taking off wigs at a seminar, so I felt prepared. Believe me, it’s more complicated than it seems… where to hold it, how to adjust it, how to take it off with minimal damage.)

It didn’t take me very long at all to narrow down the choices. Here’s one of the winners. I love the colour – matches my glasses.

This second one is just so close to my (most recent) hair colour that I couldn’t resist. It won’t freak people out when they see me. They may not even know I have a wig on. (If my eyebrows last…).

As you likely know, wigs can be pretty hot and itchy – so the thought of adding a hat or scarf OVER a wig is not very appealing to wig wearers. And I LOVE hats! Well there IS a solution! There are wigs that are specially designed to be worn under hats – they don’t have anything on the top (other than straps)?? Oh yes!

This long haired wig fit the bill for me … I think it’s hilarious! I can braid it or put it in a ponytail. It’s my undercover hair. No one will know it’s me out on the paddle board…

My Homemade Wig

Finally, I made up my own “real hair wig”! I retrieved the braids that I chopped off 6 weeks ago and grabbed some supplies: pins, thread, glue gun, beanie and a 5 cm strip off of the bottom of one of Liam’s T-shirts (shhhh). I did some sewing to create a band that would fit exactly into the beanie, pinned it, revved up the hot glue, and went for it!

Here’s the process!

Finished product — *Beanies are not flattering – but they fit nicely under hats!*

I think I’m all set!

Next up, wraps, turbans and do-rags …

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.

Coming Unglued

Posted on December 5, 2017 by pioneerintrees

I’m coming up to 3 weeks since having my breasts removed. Since I left the hospital I have subconsciously been measuring my progress by the amount of gluey bits that I’ve been able to remove from my body. I know this because now that it’s almost all gone, I’m still not healed. And I’m appalled. But I’m getting ahead of myself.

glue in the armpit — *Just kidding – these are bruises from where they taped me to the table. (OMG, really? Yes.) But note the tape going WAY up into my armpit!! Seriously excessive.*

I came home a few hours after surgery. I was hopped up on oxycodon and therefore didn’t care that the tape attaching the bandages to my body came high up my chest, straight around under my armpits and across my back. The next day, when I realized that the tape was preventing me from moving freely, I pulled back a few centimetres along the perimeter and tucked it in on itself, like a rebel. Thus began my journey into tape removal, and in my mind, recovery.

big ass bandages — *This first bandage was more like a halter top. Note my work on the edges to make a nicer finish.*

I guess that my tape removal = healing theory came from the premise that this healing thing was going to continue on a predictable trajectory. Tubes out, big pad of bandages off, staples out, smaller bandages off, steri-strips on, steri-strips falling off, … no tape. Done! HA! How easy was that??

Look at how the glue turns black – even on the edges of the steri-strips! Yeech.

Now, as I have gone off all drugs except for the odd extra strength ibuprophen, I’m ALMOST glue free, and yet … what’s that I hear? Oh. It’s nerve endings yelling at me! Wearing a shirt hurts. Wearing anything hurts. That is, unless it’s really tight. I feel like a deep pressure junkie. I stand around pressing my hands flat against my chest to make the sensation go away. It’s not quite pain, it’s more like a humming, or the feeling when you’ve had frostbite and then you come into the heat. Burning. Pins and needles. It’s very distracting. Driving with an ice pack under the seat belt is distracting (but feels so great!).

It’s actually fascinating to probe around the scar tissue and feel the edema in some areas (soft and pillowy) and scar tissue (?) in others (hard and unrelenting). I don’t know exactly where the surgeon dug and scraped to get at the sentinel lymph node, but I can guess.

So ya, I’m almost 3 weeks from surgery and still unable to do basic stuff without wincing, such as:

wipe the table
pull open the cutlery drawer
drive standard
braid my hair
take off a shirt (how come it’s easy to put it on?? makes no sense)
sleep on my side
push myself up from a seated position

At my last appointment my surgeon drew me a diagram to explain it. There are nerves that run up through the breast tissue from the chest wall to the skin on top of the breast. He’s cut all of that tissue out, and in the process cut the nerves. So now I like to think that they are talking to each other. “Hey!! Where are you??” Not sure how long it takes for the nerve endings to chill out and the swelling to subside so that the skin can meld with the chest.

chest diagram. — *This is my version of the doc’s drawing. Lou can weigh in on how well I did.*

In the meantime, tomorrow I will work on removing the last few bits of glue.

Staples Out, Chill Out

Posted on November 29, 2017 by pioneerintrees

A couple of days ago nurse Bonnie took out my staples. I had to lay on the bed while she took them out. No standing allowed since some people pass out. (Oh great. Isn’t that foreshadowing??) She seemed to be struggling a bit with the disposable staple removal device … I think mainly because she had baggy rubber gloves on. I was close to asking her to take them off, but she looked so determined. She took out one or two staples that didn’t hurt at all and then the digging began. Now that was not so pleasant. “Oh this one is hard to get a hold of. We’ll come back to that later.” Oh great.

remover — *This little removal tool is pretty clever! Shove it under, squeeze. It crimps the staple in the middle, causing the tucked under part to shoot up and out.*

When it was all said and done, 53 staples were out and 12 steri-strips were put on. Why? Well, “just in case the incision doesn’t hold”. Oh, ok. Great.

Any special instructions about the steri-strips? (I’ve learned to ask this.) Oh yes, says Bonnie…

no lifting anything over 5 lbs
no pushing
no pulling
no reaching over your head
anytime you are doing exercises, stop when it hurts – don’t push past that (read: no shampooing the top of your head)
no baths

Piece of cake. I’ll just go ahead and do NOTHING.

icing the chest — *This is me going slowly bonkers. Keeps the swelling (and tenderness) down though…*

She didn’t say no knitting, so I knit up this cowl (thanks to Dana for the wool).

goofy cowl shot — *Again with the crazy eyes…*

It’s a basic pattern except that I added in a little triangular part on the bottom edge so that the wind doesn’t whistle into my coat above the top button. I HATE that about cowls! They are just a bit too short for coats that you don’t button right up to your chin.

Next up – go to see the surgeon. I plan to ask him a whole lot about the surgery itself, such as:

Where exactly were the lymph nodes taken from … that really swollen and painful spot or is that something else?
How many were taken?
And do you realize that the left side of my chest looks a LOT different from the right?
Did the resident do one side and you did the other?
And what did you do with my gorgeous nipples? I should have donated them. Or bronzed them.

Of course I will also get the first set of results from the surgery – information about the lymph nodes. Big question – was there any cancer in them? If there was, then they will likely want to take out more nodes … but not necessarily. Or they may want to radiate the lymph node area … but not necessarily. If there is no cancer (obviously a good thing), they won’t take more nodes, but it doesn’t mean I’m done with treatment. That will depend on what the breast tissue says … and that’s another 2 – 3 weeks. Could be radiation, could be chemo.

One step at a time.

In the meantime, knit. And make a plan for physio and massage therapy. (This surgery does quite the number on your shoulders and back.) And watch a little Netflix. Recommended last night are: Ozark, Shameless and Lion. Oh and Melissa implores me to watch Coronation Street, but then I’d drive people bonkers with my British accent.

Stapled

Posted on November 25, 2017 by pioneerintrees

The other day Ripley starting barking, so I knew I had company. I looked out to see a van coming up the lane. A man hopped out and headed toward the front door with a large paper bag. I’m thinking “Hey someone ordered Chinese Food for me!” Nope. It was a bag of medical supplies. The packing slip said “Staple removal kit.”

Of course I’ve been anticipating the procedure. It’s next, after all.

First though, let me tell you just a wee bit about how I survived nurse Amanda removing my drains. It was quite easy. She cut the suture, then I braced myself by putting my hand on her shoulder and followed her instructions. “Take a deep breath in, now breathe out …..” Then I swore a lot.

Here’s one of the drains that came out:

At any rate, I got through that. No problem.

drain hole & bruising — This shows the drain hole that is healing, but check out the pattern of bruising! Turns out that tape affects bruising a LOT! The angled bruise marks above the hole are from tape, the rectangle around the hole is also the same shape as the bandage. I think that’s all rather weird.

So now, the staples. I have 26 staples across the left, 27 staples across the right. The surgeon explained that depending on the stretch / tension in the skin he would either be doing invisible stitches or staples. I got the staples.

What exactly does that mean about my skin? It’s tighter? I’m more apt to be an idiot and do too much each day? I would NEVER do that! Anyway, I wonder about his choice. Because the staples are very very cruel. They look cruel and feel cruel. When the pain meds wear off they tingle and sometimes burn. I can’t sleep on my side or hug anyone. I know that they are doing their job and allowing the incisions to bond together. They’re just a bit much.

At any rate, Amanda told me the date that the next nurse would be coming to take them out (day after next…) and I asked “soooo, how exactly do you take those out”?

I of course was imagining the various staple removers that I have used – one that looks fairly sinister, with 4 fangs that come together when the hinge is squeezed, and other that seems to rely on a measured thrust under the staple. Neither of these seemed like good options for my chest. I waited with some dread as she rooted through her kit to find hers. Finally she pulled out a slim device and showed me.

This one is from the paper bag (yes, I had to open it, what can I say?):

She explained it in simple terms which I will do my best to pass on here: the device bites the staple in the middle, crimping the staple and forcing the curved ends (that are nicely tucked under my skin) to pull up and out. Just like that.

I’d rather have Chinese Food.