Tag: breast cancer

Making it Work > breast cancer

Silicone Boob Man

Posted on August 28, 2019 by pioneerintrees

A couple of weeks ago I finally got to meet the renowned plastic surgeon Dr. D, at his office in the dirty dirty Schwa, broken wrists and all (he’s not operating right now, relax). First time I’ve ever visited a doctor and shopped at Chapters in the same location, but whatever. Silver linings are everywhere, I find!

Dr. D

I arrived to a small waiting room that was empty save for two older Italian ladies who were struggling to understand the information page they had been assigned to complete. I asked if there was anyone there – they indicated in broken English that the receptionist was out for a coffee. Huh? Within moments Dr. D himself emerged and handed me my own clipboard, then 5 minutes or so later he re-emerged and got me. Not typical waiting room protocol, but oh well!!

Armed with my notepad and pen, I followed him into a small office – typical 2 chairs in front of a desk, atypical large reclining type exam chair (like a dentist’s chair) in the corner. Weird. But ok. Maybe boob exams need to be upright to observe perkiness. (My mind works this way.)

He thanked me for coming, I asked him how his wrists were healing up – small talk kind of thing, and then he asked me lots of questions – when was my bilateral mastectomy, had I had any operations other than that, etc. He had never heard of a SCAD heart attack – I explained it – he indicated that I’d have to be cleared for any surgery by my cardiologist. Interesting fact #1.

Once he was done asking background questions he opened a drawer and pulled out two sample boobs. This is where I leaned forward in my chair.

The boobies

He started by showing me a sample of the expander boob (proper term is tissue expander) and explained that after an incision is made across the scar line, the expander is placed behind the pectoral muscle. Saline is injected once a week for 5 weeks (or until the desired size is reached). The expander has a round spot on the top that is made of a different material – the injection goes in there. But I didn’t ask about any more details. (Expander questions weren’t on my list lol.) If you are interested, you can look at what the Mayo Clinic has to say (a favorite resource of mine).

Then he chose a suitable implant, noting my previous bra size and commented “you have more droop to your skin” (um, ok … I know what you are getting at and I’m 54, ok?). He handed it to me. Of course I stuck it against my chest and thought to myself “There is no fucking way I’m going to wear a bra again!” which translated to me explaining in the nicest way possible that I don’t actually want breasts – I just want things smoothed out. Can’t you do that?

Pause. Dead air kind of pause.

The “this is want I want, what I really really want” discussion

I suppose it’s not common for a patient to come to you and say that they don’t actually want what you have to offer (boobs). I told him ya, I really just want to smooth it all out. Is that possible? So then he said he had to take a look at my chest. He left while I put a robe on (likely because “take your shirt off so I can have a look” sounds inappropriate – but really, … I mean he’s just going to pull back the robe and look anyway! Waste of time. But it did allow me a moment to capture this stunning robe in a mirror photo.)

So I sat in the dentist’s chair and waited. He came in and asked me to stand up (so why have the chair?). He then looked at my chest, allowing me the opportunity to point out exactly what I want smoothed out. Isn’t it OBVIOUS? OMG.

Here’s the first shocking info: when I grabbed onto the fatty remnants of boobie and said “Can’t you just get rid of this leftover breast tissue … I mean why is it even here?”, he told me that it’s not breast tissue. OK WHAT? Nope, it’s SKIN. (Well it’s skin that looks an awful lot like the bottom of my old boobs!!) Interesting fact #2. AND … if he removes it, it will be concave. Interesting fact #3.

I’m thinking that it would be like the divot that Dr E (initial surgeon) causally told me occurred because they likely took too much fat attached to the skin in that spot.

So then Dr. D gave me a bit of an anatomy lesson – showed me where my pecs start and explained that the entire breast was removed. I said “so the breast is in a capsule?” – he confirmed that more or less, yes. Interesting fact #4 BUT I can’t seem to verify this with Dr. Google which bugs me. Regardless, all this time I thought they just missed some of my boobs.

Dr. D went back to the implant drawer and grabbed another sample – a considerably flatter implant with a much greater diameter. He said that this implant would achieve the effect that I want. That is, if I want an implant.

But … do I want an implant?

No I really don’t. I don’t want to have a foreign body in me if I don’t HAVE to. “Lots of people have foreign bodies in them and are fine.” Dr. D had noted. True. Prosthetic hips and knees, pins and bolts to hold together plates that support broken bones, stents, pacemakers… But breasts are optional. Cosmetic. Other implants are not.

At the beginning of our meeting he said (with resignation in his voice) “I’m sure you’ve heard about the recall of textured tissue expanders and implants in the news.” Yes, I said, I had. (I can’t imagine that women getting cancer from a specific type of implants is particularly good for business.) He explained that implants are made of silicone. I listened. And I asked if there are other options.

Dr. D’s Wife

It turns out that Dr. D’s wife is also a surgeon who specializes in reconstruction using the DIEP Flap method. (Two breast people. Imagine what that means, just for a moment.) I’d seen this term referenced here and there but didn’t know a lot about it. Dr. D gave me a summary: fat is moved from one part of your body to recreate your breast. But before he’d explain further, he needed to know if I am a candidate – in other words, do I have enough fat to move. (I was literally scoffing out loud at this point – OMFG my belly might be an ASSET!! I’m the IDEAL candidate! Interesting fact #5.)

He asked me to unzip my pants so he could have a look at my belly (no robe required here, I noted). And then to drop the robe off my shoulders so he could see my back fat (the reason I won’t try on sports bras at LuLu Lemon anymore). He pronounced me a candidate DUH and we sat back down and he told me:

it is a day long surgery (really, a day? You mean 24 hours? 5 hours? Come on. I’m a details person. But I let it go.)
an incision is made across the belly (right across …)
tissue and a bit of your abdominal muscles are removed (my FAT and a blood supply source)
implant is done
the blood supply has to be carefully connected so that the tissue does not necrotize (um gross)
you have to stay in the H for approx 3 days
your abs take a while to heal

I asked if chunks are taken out of the belly – how does that work (imagining two hunks of fat taken out). “No, it’s an incision across … like a tummy tuck.” OK ARE YOU SERIOUS RIGHT NOW?? (Obviously Interesting fact #6, am I right?)

He then showed me what the two procedures look like when they are healed – implant versus DIEP Flap. Essentially implants are more perky and symmetrical and there is a massive abdominal scar with the DIEP Flap. There are plenty of stories of people who have had the DIEP flap surgery done – this one is a good one to look at!

Risks

I asked about infection and risks (thanks Jenny). He admitted that yes, implant surgery comes with a much higher risk of infection. “It’s a foreign body.” (Calmly stated, like I’m an idiot.) Note that he did NOT talk about any other risks. But I will tell you!

I follow #flatandfabulous on Instagram – a hashtag used by cancer survivors who have had a unilateral or bilateral mastectomy (one or two boobies removed). There are many interesting, brave, strong women who share their photos, stories, challenges, fears, etc on instagram. Recently I started following @hollykthrasher who had implants removed after they made her very sick. It’s called an EXPLANT. Interesting fact #7.

Coles notes: Holly went through implant surgery, had marvelous tattoos done and yet was never feeling well afterwards (heart palpitations, sinus issues, muscle & joint pain, chronic inflammation, insomnia). She finally determined, through intrepid research, that her implants were making her sick. She had them removed. Here they are (with the skin and part of her tattoos clinging on).

Note: these implants were in Holly for almost 3 years. You can see a layer of tissue around the implants. These “capsules” are formed by the body as a response to the foreign body being there – likely as a matter of protection. Explant surgery is painful and difficult, since the capsule must be removed as well.

Second Note: Within weeks after the explant surgery Holly said she felt like her old self. You can read more about her or buy a copy of her book (that chronicles her journey) on her blog.

Of course this is not to say that everyone will develop “Breast Implant Illness” (BII is a thing!). But some do.

What’s Next?

I’m going to see Dr. D’s wife, at Sunnybrook and find out more about the DIEP Flap surgery. (We’ll call her Dr. S.) I don’t know that I want the procedure done, but I don’t want to say no till I have all of the information. I have to admit, the tummy tuck / smooth chest combo pack is rather appealing.

I can feel a pros and cons list forming.

Still with the Doctors

Posted on July 27, 2019 by pioneerintrees

You’d think that once they’ve cut your boobs off, dosed you up with chemo for 3 months and then marinated you with Herceptin for a year you’d be good and DONE and they’d let you MOVE the fuck ON. But no. That’s not how it works. I WAS WRONG. This is how it works:

6 months = magic number

It appears that if something were to change in your body, it would take 6 months, because that’s how often they want to see you. Not 7 months or 8. Nope. 6 months.

I went to see my surgeon last week (the cute one who once demonstrated a sense of humour when he said I could get a tattoo of a camel on my sand dune chest). It’s been 1 1/2 years since bilateral mastectomy surgery, so I’ve had a few check ups with him since then. OBVIOUSLY my chest is totally healed up so I was going to cancel (it was SO BLOODY NICE AT THE COTTAGE), but I came home for the appointment because I’m a model patient. (insert grace face emoji)

The check up followed the same procedure as the last ones:

he called me out of the waiting room
led me to an exam room and asked me to gown up, how are you doing, blah blah blah
when he came into the exam room he had me lay down on the exam table & draped me to my waist with a sheet
I had to put my left hand under my head while he ever so respectfully moved the left side of my gown to the side and palpated my chest / scars, etc all while chatting in a distracted way

(Ok, I found that to be SO freaking funny!! I MEAN, I HAVE NO BOOBS!! Does he REALLY need to do the draping and respectful lifting thing? Does he do that with a dude?? I dunno. I just seemed WEIRD that he’d go to all of the effort.) The other reason was so funny was because I’m SO ticklish, and I’ve got my arm up and bent with my hand behind my head and he’s probing around – Jesus it was so very hard to keep from bursting into laughter when he was doing that. Ok, back to the bullets…

he switched to the other side, he palpated and I giggled
he asked me to de-gown and go to his office for the obligatory post exam chat

I said to him at that point “I don’t mean to be rude or anything, but what exactly is the point of these visits?”. Deadpan response “I’m looking for recurrence.” WTF ARE YOU TALKING ABOUT RIGHT NOW?

I had no idea.

Obviously recurrence is a thing

I mean, wouldn’t I go to my oncologist to check for recurrence? My family doc? I figured that the surgeon’s job was to cut out the cancer, not to identify recurrence.

But what do I know?

So we chatted about recurrence. I recalled that at my last oncologist appointment she said that the only way to know if it’s come back is if, well, it comes back. There are no tests. (I didn’t believe that… would YOU believe that?) My surgeon attested to that. He said to watch for pain where there was no pain, shortness of breath, and lumps / bumps where there were none prior. My immediate thought? What scale of shortness of breath are you talking about?? I’m not exactly fit (as evidenced by the extreme cardiovascular challenge of walking up and down approximately 200,000 steps in my recent trip to Italy).

*There are a shit ton of steps in the Cinque Terre, Florence and Positano. Fair warning, my friends.*

But that’s another story. Back to the surgeon’s office …

I ventured to ask him “So … if it were to come back, would it go to my brain first?” NOPE. Turns out it’s the lungs or the liver. Good to know.

Next up?

I’m heading to see a new doc – Dr. Derek in the dirty dirty Shwa (don’t worry, that’s just where he does consults). He’s a plastic surgeon who has a golden reputation for mastectomy reconstruction. I’m very interested to meet him – not only to ask him the following questions, but to see how he’s doing since he (apparently) broke both of his wrists in a cycling accident in June.

These are my questions for Dr. Derek:

what are the options for my sand dune chest?
which is the least invasive?
which will heal the fastest?
what are the timelines for each?
what have most women with a chest that looks like mine opted for? (I can’t figure out how to word that one correctly)
do you have any before and after pics? (before and after reconstruction, not the cycling accident… but I have been thinking about the broken wrists, I’ll be honest)
who do you recommend for mastectomy tattoos?

So that’s where I’m at. How are you? And if you have any more questions for Dr. Derek, let me know.

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.

One Year Since Boob Removal

Posted on November 17, 2018November 17, 2018 by pioneerintrees

Today is the 1 year anniversary of my boobs being cut off. (I wonder if I’ll be reflecting on it every year … jesus I hope not.) I’m not making a boobie cake or anything (although the thought did cross my mind, I’ll admit it). But I have been thinking about it a lot. Mainly because it’s not at all what I thought it would be like.

How I felt THEN

Actually, I’m not sure that I even considered what I thought it would be like to be boobless. It all happened so fast – mammogram to surgery in 2 months. (I won’t go into the galloping again – you can read about it in an old blog post.)

I went in to the hospital on surgery day preoccupied with the hope that Dr. E would have the time to take off my second boobie, the cancer-free one. I was definitely in ‘get ‘er done’ mode. “I’ve got cancer in me? You’re not sure how far it’s gone? TAKE IT OFF. And, oh, … PLEEEEEASE take the other one off too.” I was so focused on him taking them both that I didn’t think too much about all of the other stuff. Like what it would be like to have no boobs. I didn’t actually care. I mean, I felt lucky that they caught the cancer and that it didn’t appear to have spread outside of the breast. It wasn’t like they were going to cut off my arm. It can always be worse!!

I did, however, have the presence of mind to take one last photo of the cancer boob. Lou gave me this white cami for post surgery survival and I decided to snap a before photo. (I’m not even going to talk about my hair at this point. Oh yes I miss it, I miss it. But whatever. Wah wah… )

How I feel NOW

It’s complicated.

On one hand, I don’t miss my boobs at all. Not even a bit. I’m done with the boobies – they served me well and they were quite frankly awesome at nursing. But after that was all done, they were a bit more trouble than they were worth. For example:

I had to endeavour to make them look perky… pushing ’em up. The bras, the bras. The straps! The underwires! Too tight, too loose. So glad to be done with those. Hallelujah!
They were a hindrance to activity.
- Diving into the lake – the bather flies up, boobies pop out / poke out. HA! Diving with no boobs is A DREAM!! No adjustments necessary! I’m basically Victor Davis reincarnated. (Loved that guy.)
- Pose of the child is called that for a reason. It’s not called ‘pose of the middle aged woman’. No. Having no boobs makes pose of the child POSSIBLE.
- Sleeping on your stomach does not require major adjustment. I just sleep. MAGNIFICENT!
- Drinking out of the tap does not necessitate my laying my boobs on the edge of the sink. It’s so damned easy!
They were sweaty!!! And now… no more boob sweat! No more drips between and under the boobs ladies! I can wear a tank top happily. Joyfully. Playfully. Watching me. (I’m always singing in my head. Can’t help it.)
Getting ready quickly was so tricky!! For example, in a woman’s world when someone suddenly comes to the door and the boobies are loose and low under a baggie sweatshirt, they are broadcasting to the unexpected at the door “ya I know it’s 2:30 pm and I was still in my jammies”. Now a T shirt is tossed on in 3 seconds. Dressing is so damned quick.
Most of the good Halloween costumes were unattainable. Now I’m just so much more believable!!

On the other hand, it’s strange having no boobs. I was just so used to them! I still do a double take when I walk by a mirror. I don’t care that I am flat chested. It’s just weird to see. Like when you get your hair chopped off and colour it. (Another blog post… honest to god it’s coming.)

I have no desire to have implants or wear prosthetics (again, the bras… why????), but there are two things that really do bug me:

My chest does FEEL FUNNY.

You know the feeling when you have to get a bit of fluff out of your belly button and you dive in there to grab it with a Q-tip or your finger? It’s a weird inside-your-body feeling. That’s what the scars on my chest feel like. They always feel like something. Vaguely tight. Kind of numb-ish. They feel.

My chest is not flat.

In fact, it’s like sand dunes. The scars are deeper than my chest. (I know there’s a surgical explanation. I will ask Dr. E and get back to you.) At any rate, the scars basically run through the middle of two dunes / divots / valleys. And that’s visible when I wear certain clothing.

Why do I care? Well… recognizing that this may sound totally lame to you, or quite vain, I’d like to have a nice smooth chest canvas for a couple of tatoos. So ya, I’ll see a plastic surgeon and find out what’s possible.

Soon we’ll talk about the hair.

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 … )

Stepping Out

Posted on March 13, 2018 by pioneerintrees

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.

family hair cut session — 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 …)

cutting it off — *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.

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.

Games

Posted on January 25, 2018 by pioneerintrees

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

Are you ready?

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

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

The Game I’m Playing

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

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

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

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

How do I Play this Game?

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

Drug #1 – Paclitaxel (chemotherapy)

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

Drug #2 – Diphenhydramine (“pre-med”)

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

Drug #3 – Ondansetron (“pre-med”)

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

Drug #4 – Ranitidine (“pre-med”)

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

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

Drug #5 – Dexamethasone (“pre-med”)

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

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

Conclusions:

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

Your final task:

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

CANCER

Now post your two words! Thx for playing!