Tag: cancer

Making it Work > cancer

What’s Done is DONE!!

Posted on January 19, 2019 by pioneerintrees

These days I’m thinking about being DONE and what it means for me to be DONE (yell a bit when I put done in caps, ok?).

I’ll break it down a bit for you. In the next two weeks I have:

a meeting with my surgeon
my final Herceptin treatment
my portacath removed

Each of these appointments represent a different kind of DONE (nice job) and a bit WOOT WOOT (emphasis here too, please, maybe twist your wrists in a circle).

Surgeon Visit

First of all, surgeon man is very charming WOOT WOOT, so I like to visit him, and this will be my last visit with him. Nuff said about that. Secondly, I’m planning to talk to him about plastic surgery and the hypothetical referral that I was given by someone that I cannot recall right now (I think it was he the surgeon, but could have been my family doc). Bottom line is since I don’t know who said they’d refer me, or who they said they’d refer me to, I haven’t been able to follow up, and therefore I don’t know where I’m at with the referral. This is my life. Just ask my secretarial staff.

I digress. Why do I want a referral? Two reasons:

My chest wall looks like sand dunes. I don’t need breasts, but I’d prefer tabla rasa rather than a Dali-esque distorted chest wall. Who cares, you might ask? Well, I care. When I wear clothes that cling I don’t care that I’m “flat chested / non-breasted” (the name of my imaginary post-retirement company that sells bathing suits with no cups). But I don’t want clinging tops that show the deep tracts of my scars. That just looks wrong. Troughs across my chest are not a great look.
I want to have some tatoo work done on my chest WOOT WOOT and I’m thinking that the “memories of boob” bumps could impact the design options. (But what do I know about the effects of bumps on tatoos…)

So ya, I want to see a plastic surgeon. Can she (yes, she’s a she, I remember that much), … can she do something easy to flatten me out? What about the one deep sink hole? That thing is just going to look worse as the years pass, I can tell you that.

*Belly button #2 and portacath bump in upper right. Vogue material right here.*

You can see why the surgeon appointment is an important DONE for me – because it’s a done with a twist. Done with him, and on to surgeon #2. WOOT WOOT!

Final Treatment

This one is a clear DONE. My treatment regimen was 12 chemo treatments (in a row, so once/week for 12 weeks) and 18 Herceptin treatments (once every 3 weeks for a year). I had to miss one Herceptin treatment because of the heart attack, so that’s why I’m finishing 3 weeks later than prescribed. No biggie.

I’ve been counting down the treatments since the summer, each time taking the nurses the same number of treats as treatments that I have left. So it’s become a bit of a “thing” for me. I started with 13 dipped oreos, then 12 muffins …

I really love the nurses in the chemo suite – they’re all so welcoming, positive, gentle, nice… (even the one who I had some reservations about once – I’ve kept my eye on her). Because of the nurses, the chemo suite becomes a safe place to be when you’re in treatment. People are in various stages of feeling shitty, and the nurses treat their patients like family. It’s a nice, calm place to be, and I actually enjoy going. I know that sounds whack, but it’s true. Warm blankets, understanding and a couple of cookies go a long way.

I can’t say that I’ll actually miss going, but it does feel kind of like the end of summer camp. I have to say goodbye. To make it easier, and to thank them for getting me through it, my good friend Annie is coming with me and bringing a whole bunch of her gorgeous charms that she makes out of recycled glass. I’m going to have each nurse choose a charm for her necklace or bracelet. I’m excited to say thank you that way. I think they’ll love Annie’s work. WOOT WOOT!

Truly though, I won’t feel truly DONE till …

Portacath Removal

I get this sucker out one week after my last treatment. Take a look at this video – it gives me video envy! I have no idea how that woman got permission to video the removal of her portacath, but I’m seriously jealous!! It’s so cool to be able to see what’s being done to you.

Having the portacath has been a huge asset. It has been so easy for the nurses to deliver chemo and Herceptin. I have seen some of the other patients’ struggles with collapsed veins, and I’ve felt so grateful for my port. It was also super handy when I had morphine injected straight to my heart while I was passing that GD kidney stone! The relief was literally INSTANT (jazz hands here).

Many people will tell you that cancer is a “journey”. It’s true, it is. My journey is almost DONE. It’s about fucking time.

Moving Forward #asonedoes

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

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

The first bit:

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

The Next Bit:

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

The last bit:

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

Ok what? Unplanned meets planned. Did it all.

The final straw bit:

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

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

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

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

Recovery Looks Like a Y

Posted on April 12, 2018 by pioneerintrees

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

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

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

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

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

What Happens in Recovery?

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

What’s Happening So Far?

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

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

How am I Facilitating my Recovery?

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

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

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

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

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

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

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

See you at the Y!

Comfortably Numb

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

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

What is nephropathy?

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

What can I do about it?

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

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

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

Thing One:

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

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

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

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

Anyway. Rant over.

Thing Two:

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

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

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

What have I noticed?

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