We all have things that we aspire to do when we have time. Something that I’ve always wanted to do is to get involved with Hospice in some way – ideally as a volunteer. Going through this crappy cancer journey has reminded me of this goal, since one of the goals of Hospice is to help people who are dealing with a life threatening illness live their lives to the fullest. I’m doing that right now, although I don’t needs the services of Hospice – hallelujah x 1 million.
The Organization
If you don’t know about what Hospice is, you’re not alone. A lot of people have no idea that this incredible organization exists, or if they do, they don’t really understand its purpose.
Generally speaking, when someone is dealing with a life threatening or terminal illness they need support. The family needs support. Hospice provides it. As people reach the end of their lives and are in palliative care, Hospice is invaluable.
Currently Hospice Peterborough is building a new facility on London street. It’s a huge endeavour. Here’s a quote from their website:
“The new London Street building will provide a welcoming, accessible space for Hospice Peterborough’s home support program, day program, caregiver support, grief programs, family support, wellness programming and administrative offices. The scope of Hospice is also expanding to include 10 private bedrooms, offering another choice for end of life care in the community and the first hospice care beds to exist in the City and County of Peterborough. This will complete Hospice’s transition to become a central hub for the delivery of hospice palliative care and grief support in our community.”
looking straight at the entrance
Building is underway!
The Pitch
So I’d like to ask a favour. Will you walk with me on May 6th to raise money for Hospice? It’s the day before my 53rd birthday. It would be the best birthday present ever! I will be in recovery from the chemo (although still having other regular non-chemo treatments) and I should be good to walk the suggested route (or most of it).
The Options
No walking – but can donate! Perfect. You likely live too far away, have small children or are too lazy. Haha!
You can donate by pledging to me that you will give me cash. Just let me know how much you can donate in a comment on this page, on Facie, by text or email, phone me, Insta, come over … OMG. Just let me know how much … then I’ll come after you!
OR….
You can donate by going to my team page on the Hike for Hospice website and clicking on “Donate”. There you’ll find a little ditty that I wrote. After you read it, you can donate something by clicking on the blue button. Easy peasy. (Or you could go to the Hike for Hospice website and search for my team, but that’s unnecessary.)
OR…. Walk with me! Outta site!!! Now that would be so much fun …
Just go to my team page and rather than “donate”, click on “join team”. From there you choose the type of participant you want to be. You can just walk, add a donation, or you can set your own fundraising goal and then harass persuade some of your friends to give YOU money for Hospice. This way you can compete with me to see who can raise more money. (I am very competitive, just sayin’.) If you want to do that, just set a goal for fundraising, and make your own donation (I didn’t do this the first time and it took AGES to figure out how to donate, not just set a fundraising goal…)
The Final Comment
I don’t generally like to hit people up for money, but come on. I have cancer, it’s (going to be) my birthday, and Hospice is awesome. Please walk with me and / or make a small donation to a great organization!!
xoxoxo J
My bald head thanks you. And all of the other parts of my body do too, but my bald head is the most thankful for sure.
Today was a big day for me. I untoqued / unwigged my shorn head. That’s right – I went commando. In public. And I survived it. And people were not staring at me. I got one sympathetic / helpful gesture, but that was ok. It was all ok. Hospital, Canadian Tire, Health Food store, Grocery Store. My shorn head went on tour.
It’s interesting to me that the side effect from the chemo that causes me NO physical discomfort (compared to the various other inhumanities) is the one that causes the most psychological discomfort. In my mind it is no big deal to lose my hair. I can rationalize it. “It’s only hair!” “It will grow back!” Ya, WHATEVER, losing your hair SUCKS. There is a LOT of your sense of style in your hair. A lot of vanity. Hair is important in our culture. You can’t deny it. Otherwise, why would we pay to have it coloured and trimmed every 6 – 8 weeks? We LOVE our hair, and when it falls out, it is WEIRD. It is not the norm for women. And everyone knows it. So it’s very easy to feel insecure about having a shaved head.
Last summer my hair was pretty long for me … and I liked being able to wear it up, let it go a bit curly, or braid it. It was lots of fun, actually. When I found out that I would lose it, I opted to cut it short … so that it would be less painful when it all fell out. I still think that was a good move.
I had my head shaved last week, on week 9 of chemo. (My hair actually lasted a LONG time!) I had it shaved since it was looking a bit Donald Trumpish. It really did look pretty horrible – my scalp was very visible and the remaining hair was wispy and elfin. I could stand it up and look like a troll. (kind of fun…) And my wigs would just float around on top of my head. (very irritating) So I went with the kids to Jenny’s shop in Lakefield and we all had haircuts.
My head looks exceptionally round in this photo. Judgy judgy…
Jenny took it down to 1/4″ … and wrote a message in the back for me. (I don’t have a photo of that just yet. I’m behind in the photography dept since I feel a wee bit crappy at this stage in the game …)
It turns out that lots of emotions are wrapped up in your hair.
There’s not a not of hair there, and it’s still falling out – so it’s not exactly a buzz cut … more like a fuzz cut. In my mind it’s what a baby eagle looks like, but I really don’t know. It’s just a vision that’s more appealing than the Donald’s head.
So ya, I have a shorn head. It feels pretty nice – kinda like having no breasts. Convenient. Just not very normal. Not very feminine.
WHATEVER!!
I plan to show my shorn head with pride, whenever I feel like it. And I’ll wear my wigs whenever I feel like that. I just need to practice not giving a shit.
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.
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!
This is a shit ton of pills – agreed? In 0.5mg doses. I can have up to 2mg, 2x/day. No sharsies.
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.
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.
Chestnut?
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…).
Pretty sweet!
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…
I’m channeling my inner Joni Mitchell.
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!
My hair!! So pretty.Made a band from a T-shirt, pinned it in to the hat, stuck that hair in the right spots. Glued the sucker.Beanies are not flattering – but they fit nicely under hats!
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:
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.
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.)
Way to go!
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
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
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
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…)
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).
I am too lazy to warm it up in the morning so I take a teaspoon of it in its solid state and chew it / let it melt in my mouth. Kinda gaggy, but you get over it. Or you can not be lazy and warm it up.
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.
Where did this even come from? Kroger mystery. Is there a shelf life on Vaseline? So many questions.
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!!
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.)
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 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:
Should have put the diaphragm in. Forgot that.
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
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 …
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.
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.
Coveted.
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!
Very comfy indeed.
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.
Very impressive system!
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.
I had my head shaved last week, on week 9 of chemo. (My hair actually lasted a LONG time!) I had it shaved since it was looking a bit Donald Trumpish. It really did look pretty horrible – my scalp was very visible and the remaining hair was wispy and elfin. I could stand it up and look like a troll. (kind of fun…) And my wigs would just float around on top of my head. (very irritating) So I went with the kids to Jenny’s shop in Lakefield and we all had haircuts. 
