Month: February 2018

Making it Work > 2018 > February

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 …

33.3% Done, 100% Learning

Posted on February 2, 2018 by pioneerintrees

Yesterday I had my 4th treatment of 12. So ya, I’m 33.3% percent done chemo! During my obligatory insomnia after treatment, I’ve began reflecting on “what’s been my learning”. SO MUCH LEARNING!

Chemo Patients are not Judgy

Right from the get go I started talking to other patients in the suite. Some patients have headphones in, have their head down, are napping or texting or reading. But others make eye contact, smile, give knowing glances when something happens in the suite (new patient, volunteer with cookies, joke being cracked). These patients are the sharers, the helpers, the commiserators. I like these people!! (Please don’t get me wrong, chemo sucks and it’s ok to have your head down and get through it … I don’t judge!!)

Yesterday was a long chemo for me – 3 1/2 hours – since I was also getting Herceptin (I get this every 4th treatment). So there was quite the ebb and flow of patients in my section (many have 1 hour treatments). I was in the first “bay” where there are two nurse sections. I’ll draw it for you:

drawing of chemo section — *This was my first week in this area. I liked it because it’s more cozy. The other section shares the long back wall & more chairs (beige too), so it’s more spread out.*

At one point there were a total of four ladies having their chemo – all in the second category of people… the eye contact people. I noticed that the lady across from me had no eyelashes and eyebrows but a full head of hair. To her right the knitter had soft fluff growing in on her head. To my left the lady’s hair was obviously thinning. So I started up an alopecia conversation. It was AWESOME to hear their stories and advice!

It’s not like being new mother where everyone weighs in on breastfeeding and circumcision and family beds and pretty much EVERYTHING where there is a choice to be had! These women were smiling and nodding and laughing. Not judgy. It was so refreshing.

Make Friends with Digestive Cookies

They’re all you’ve got when you forget a snack.

I need to investigate into this choice of chemo cookie.

Seeing Friends at Chemo can be Heartbreaking

On my first day in chairs at the Cancer Centre when I was waiting to see my Onc, I heard a voice I knew. I looked over and recognized a friend and former neighbour. I babysat her kids for years. I loved her boys, her house, her husband’s twinkle in his eye and generous laugh, her huge smile and loving heart, her trust in me. I was immediately sad and happy to see her. She is now obviously a patient. Thinner. But in no way diminished. I waited for her to stop chatting with the lady who was sitting 2 seats over. When I called her name, she looked at me, paused and gave me that look. Oh! Oh. And we talked.

Yesterday a former Teacher Candidate walked through the suite with his mom while I was chatting with my sister. He heard my voice, looked over and came to give a hug. I think I gave him the look. Oh! Oh. And we talked.

It is far too easy to lose touch with people that you value and love. I will strive to do more reconnecting and less disconnecting. Meeting people in the cancer clinic who you love but have become disconnected from? It’s bad ju ju.

Silver Linings Exist

On my 2nd treatment day I met Kari who came in with her dad and mom. Her dad was having his first chemo. He was in the chair to my left. It was stressful and hard for them all. We chatted, commiserated, I tried to support, we shared information. Now we text every once in a while and check in on each other’s lives as we live with cancer.

Sparks of light connect in strange places. And I’m grateful for it.

Noticing Matters

I can’t even tell you how many notes, swearing socks, dinner contributions, emails, gift cards, brown chair texts, books, comments on the blog, chocolate, spa treatments, hugs, visits, jewelry, prayer, tea, etc etc etc x100 that I’ve received from family, friends, colleagues, students, former students … the list is overwhelming to me.

*At this point I appear to have all the tea in China.*

One of the things that have surprised me have been the bits of support that are related to my treatment. We all know that side effects suck. So when I get tips that help me, I REALLY appreciate it! Here are some examples:

Adrienne told me about Secaris which is a clear gel that I stick up my nose to ease the sinus pain. (Better than the Vaseline purchased 10 years ago!)
Jim told me about chewable Papaya enzyme (who knew??) and Natalie sent me Digize which is an essential oil that I put it in my vaporizer or rub a diluted mixture on my chest – both ease heartburn.
I got stool softener advice from the lady with thinning hair! It works!! omg and that was yesterday! TMI
Wig advice from Jane and Jenn (who I don’t know but a friend hooked me up with her via email).
My cousin Cheri who is a prof at U of Windsor and is currently researching the benefits of exercise for breast cancer patients sends me pertinent research journals (from Current Ocology – A Canadian Cancer Research Journal). There are exercise guidelines in there that I am thinking about trying to follow. Sorry Cheri. WIP.
Cheri’s colleague Lisa whose research of the benefits of yoga. I’m doing better with that one. Thank god for Yoga with Adriene.
A local doc friend got me onto reading Research Monographs for the drugs I’m taking. Fascinating and helpful. (I like data.)

It’s ALL important. It doesn’t matter what it is … big gesture or small gesture … doesn’t matter. It’s primarily the noticing and the encouraging. The medical stuff is like icing on the cake.

Note: I apologize to all of those people in my life who I didn’t pay enough attention to when they were going through HELL. I think that I felt far away and unknowing and unhelpful and not wanting to say the wrong thing. BUT THAT WAS STUPID. STUPID!!!!! So if someone in your life is going through something – let them know that you are in also in the universe, thinking about them. That’s all. (Sorry Jayne. Sorry Jane. Sorry Sherri. Sorry Jim. Sorry Kirk. Sorry Marilyn. I love you. Please forgive me.)

And so…

Bottom line is that I’m learning. This learning journey is hard, but important, as all journeys are. Thanks for walking it with me. Thanks for teaching. Thanks for helping.