One down, Seven to go (Or, why I have a new appreciation for a mild sedative.)

Anxiety was at an all-time high yesterday, I will be the first to admit. Lots of tears, lots of yoga breathing and self-talk. None of it was working. Like not at all. Tears during breakfast out at restaurant, tears in the car, just could not pull it together at all. The fear of the unknown can render one completely powerless and unable to deal positively with situations for which we need to be strong. My sister and mom were absolutely rock solid: perhaps messages like this one helped?

Funny is big in my family. Sedatives, for the record, are not. This was just a friendly reminder that everyone else in the room needed to be calm for me. Much appreciated.

Funny is big in my family. Sedatives, for the record, are not. This was just a friendly reminder that everyone else in the room needed to be calm for me. Much appreciated.

I finally caved and took a very small dose of a mild sedative. Not something I do often, but let me just say that after several days of high anxiety taking over my life, I was profoundly relieved to be able to come down off the ledge and deal with what was coming. And, after all of the intense sleepless nights, the irrational fear that almost had me booking a flight to Anywhere-But-Here, this experience was completely manageable. I think it would have been really helpful for me to see a play-by-play prior to going in. Here’s my version.

Firstly, let me start by explaining what happened to my diet over the four days prior to Chemo #1. I am not a huge meat- eater. Certainly not a red meat-eater. I usually have red meat about once a month or so. So, ordering steak for dinner on Friday night, having a burger on Sunday afternoon and another one Monday with my Dad on the day before chemo (this may become a tradition) and then following it up with a STEAK for breakfast the day of chemo was highly unusual for me. I don’t know if my body was telling me to get strong, and I’m certain it will be different for everyone, but all the kale and spinach in my fridge has been coldly ignored by this carnivore. So far, it seems to be working.

I brought mints and candies with me to chemo – which have become ‘chemocandies’ in my head now. I happen to be one of those people who immediately taste anything injected into my body – saline, tin, red devil, you name it. Some do, some don’t, of course. I do. I probably went through about 30 of those little mints during the two hours that I was there. I would highly recommend these ones.

Sour works best, apparently. Totally masked the taste of everything they injected.

Sour works best, apparently. Totally masked the taste of everything they injected.

I would also highly recommend warm feet, and company. But I also saw many people there looking very solitary with curtains drawn, and still others who slept through the entire thing. It is a very personal journey.

Another talisman - my friend had these made for me specifically for chemo - told the woman who made them my story, and she created them especially for me. I love them.

Another talisman – my friend had these made for me specifically for chemo – told the woman who made them my story, and she created them especially for me. I love them.

I went in expecting the absolute worst, and so everything I have experienced since has truly been a lovely surprise.

To start, I got two separate bags of anti-nauseant medication. I had also taken one in advance. It seems to have worked for me, and so I highly recommend taking whatever they recommend. They’ve done this a few times, right?

Red devil, red because, well, it is red, as will be your urine for a little bit after this treat..

Red devil, red because, well, it is red, as will be your urine for a little bit after this treat..

Then comes the ‘red devil’. This is pretty intimidating stuff. Can burn your skin inside and out, and requires all sorts of precautions on the nurses’ parts and means that family has to kind of ‘step aside’ for a moment or two. It apparently feels quite cold when it first enters your system – but my nurse put a warm towel over my PICC line and I felt fine. They inject this part manually, so that they can have control over how fast it enters your system and how you’re feeling. Again, I felt fine. (Crazy??) Once two tubes of this are put into your system, they hook you up to a drip for an hour that contains another chemo medication and you sit and rest. I actually drowsed off for a bit. Bell dings, and you’re free to go home.

I find that looking away and disappearing into myself is really, really helpful. Almost as helpful as warm blankets.

I find that looking away and disappearing into myself is really, really helpful. Almost as helpful as warm blankets.

I am now 24 hours plus past, and although I know I am likely to crash and be intensely tired and need to sleep, I think I’m managing the nausea part quite fine. I liken it to being pregnant. My stomach is very…specific… about what it wants and what it doesn’t. I smelled my mother’s coffee this morning and announced “And…i’m off coffee!” I have had toast twice today and will likely have it again tonight. I may get crazy and put some avocado and cheese on it. I’m not going to say I’m ravenous. But what I can say is that I have been up all day, have been functioning all day, and, more than I have for the past, well, ever, I feel like I can get through this next phase. That red devil is knocking out cancer cells as I type, and I’m sipping tea and blogging. Not so bad. And that PICC line I freaked out about is going to be a total pain in my a$$ for the next 16 weeks. But I sure loved having it yesterday. With all that anxiety the last thing I needed was to be poked and prodded again. It really did make the chemo treatment simple.

The lessons for me are these. Sometimes we need a little help getting to where we need to be. The fear of the unknown is the worst part of almost all difficult things we have to do in our lives. Once we know what we’re dealing with, just about anything is manageable.

I’m looking forward to having some time off before the next treatment. I know my body needs some time to heal before I can do this again. But for Round 2, I will be better rested. I will be less fearful. Maybe I won’t need the help getting to where I need to be. Maybe I will. I’m okay with either.  I will come armed with what I know I will need: my family, my mints, and my moccasins. Visitors welcome. Warning: I will likely be hairless by then. All talismans will remain present.

It seems silly, but a collection of random, meaningful objects has been of great solace to me. The tiny turtle around my neck is a 'wish necklace', and it will fall off one day of its own accord. The meaning is that all of this is temporary. I wear it always.

It seems silly, but a collection of random, meaningful objects has been of great solace to me. The tiny turtle around my neck is a ‘wish necklace’, and it will fall off one day of its own accord. The meaning is that all of this is temporary. I wear it always.

Oops. I did it again. (Or, why the HELL would anyone send automated messages for this crap???0

I got an automated message on Friday, informing me that I had an appointment at the hospital at 9:45 Monday morning. No further information. And so, I dutifully entered said mystery appointment into my phone and got myself ready to go this morning, blissfully unaware of what was coming, and again, not planning to have anyone with me. “Hey – do you feel like coming to my mystery appointment Monday morning?” seemed a little bizarre. I let it slide. That said, my spidey-senses started up early in the morning and I called the Cancer Centre and they confirmed that I had a heart scan booked. You know, to see if it’s strong enough to start the poison tomorrow. I had my friend google the test while I got ready. The texts started coming in…

‘They’re going to inject you with radioactive dye’

‘They’re going to scan you. You’ll be there for about an hour.’

Oh, shit.

I call Diagnostics Imaging to confirm, and they brush it off cheerily. Oh no – no prep necessary. (No. Unless you’ve developed a completely irrational fear of injections, like I apparently have in the days since my PICC line placement) Tears start flowing while I’m driving and I have at least three I’M NOT DOING THIS moments on the way to the hospital. Then my yoga breathing in the parking lot, and I’ve got myself composed enough to walk into Diagnostic Imaging, mohawkery held high, and I sit in another waiting room plastered with comforting signs while I desperately try to distract myself with texting or 4-pictures-one-word, which is great unless you get stuck on one of them in a waiting room.

There is simply something counter-intuitive about marching into one of these rooms to be injected with anything that goes along with this sign.

There is simply something counter-intuitive about marching into one of these rooms to be injected with anything that goes along with this sign.

The nurse comes and gets me and asks me if I’ve ever had one of these before, in a similar tone a server would use in a restaurant while they ask you if you’ve tried the crême brulée. No, I respond. First time.

Then she hands me something to fill out, basically ensuring that there’s nothing living inside me right now, because it probably wouldn’t enjoy these next TWO injections. Ugh.

Nope no babies here.

Nope no babies here.

I have to turn my head now. So the nurse does her thing, and of course it doesn’t hurt very much at all, but I have anger inside me now. Like how is it that I have a central catheter attached to my body (my lovely PICC line, which is now very well accessorized, by the way, thanks to my amazing friends and collection of sparkly legwarmers) but I have still managed to have other veins opened up by needles three times since then??

Legwarmers do, in fact, make great PICC line covers.

Legwarmers do, in fact, make great PICC line covers.

And now that’s done, and tomorrow the real work begins. This whining about PICC lines and injections of tin and radiactive dye and blood-taking are all likely to seem pretty ridiculous to me 24 hours from now. I know this. (I am actually capable of logical thought, although this bog may cast some doubt on that fact)

I am gathering all of my talismans. I am digging deep for strength I never knew was there. I am crying a lot. I am a little bit pissed off. I am printing out pictures of my boys so their faces can be with me tomorrow when I start the series of big injections. I am so, so thankful to be surrounded by so much love and support. Taking you all with me tomorrow.

Shit just got real. (Or, today I got my PICC line.)

Well, it’s been a big week. I have been able to do a pretty good job of staying on top of my emotional reactions to each of the new phases of this treatment. I have done so by preparing myself for what’s ahead. By educating myself on what’s to come. I knew that my double mastectomy, removal of lymph nodes and reconstruction beginnings were going to cause me immediate and immense pain. I was ready for it. I was ready for it because I knew that every day that went by post-surgery I would wake up feeling exponentially better. This is what got me to sleep at night, or what kept me patient while I tossed and turned and sleep eluded me. I knew that every day was going to be better than the last.

This is me taking my first walk down the hallway of the hotel I stayed in post surgery. It wiped me out. But the next day, I walked further. And further still the day after that.

This is me taking my first walk down the hallway of the hotel I stayed in post surgery. It wiped me out. But the next day, I walked further. And further still the day after that.

Then I got my date for my first chemotherapy session. Sat down. Tried to begin my processing. Tried to figure out how I was going to mentally and emotionally prepare myself for the next four months. Not so easy.

There are a few good things that come of this. The first involves some crazy haircuts for me and my boys – we are all currently sporting mohawks – them because they are being granted a small window of permission to do so, and because it makes them feel like they have a role to play in this trip I’m on. Me? Never before would I have taken a few weeks to embrace my long-lost inner punk-rocker and shaved my head! Now I can. It’s going to go anyway, right? So one very-well photographed trip to the spa later, we three are shorn and mohawked. My son has actually coined a great new word – as I carefully spread hot pink gel through his ‘hawk, he said “Mom, this mohawkery is actually kind of fun, don’t you think?”

My boys and I had a great night photographing our mohawks. I'm pretty sure they think they're in a band. It should probably be called 'Mohawkery'.

My boys and I had a great night photographing our mohawks. I’m pretty sure they think they’re in a band. It should probably be called ‘Mohawkery’.

Still gets curly in the rain. Damned resilient curls.

Still gets curly in the rain. Damned resilient curls.

I can envision my head bald. I have looked at so many photos of bald women that there is part of me that actually wants to jump the gun and do it sooner than planned. I am experimenting with makeup, have bought an eyebrow pencil, and am steeled for the reality that even with all of this in place, there will be months during which I don’t recognize myself. I am ready.

I am ready to feel nauseated, tired and miserable. I am ready to hand myself over, on some level, to this process. I have been trying to get some perspective on the amount of time involved. I have it narrowed down to being about 2/3 the length of a pregnancy. I have handed my body over to pregnancies. Often sick, often tired, feeling alienated and isolated at times and at others feeling like I had joined a special club. Don’t get me wrong – I understand that pregnancy is not the same thing. I am trying to dig deep and tap personal experiences in a way that will help me put this timeline into perspective. It is helping.

So why then, did I choose today to completely fall apart? What is it about this PICC line being inserted into my body that made me dissolve into tears the moment I stood up after the procedure? Is it the fact that there is a ‘line’ in my body that goes directly to the superior vena cava so that medicine can be delivered unapologetically? Is it that the device is ugly, and might as well tattoo me with “I am sick.”? Is it the limitations it presents? A summer without swimming in a lake? (That does really suck, by the way. I have to totally change my happy place now.) Is it that my tossing and turning at night is just going to get more complicated now? I want to say it’s all of that – it is, but it’s something more. A valuable lesson for me. I didn’t prepare myself for today. I didn’t spend any time thinking about what today signified. Aside from asking a few of my crafty friends if they would take fabric I bought and make it into ‘sleeves’ I could wear to cover the line, I didn’t give it another thought. I went to the hospital alone because I really thought it was going to be a ‘whatever’ kind of appointment. The lesson for me is that each of these steps, as insignificant as they may seem, is bringing me closer to a time that I know I can’t get through by saying that tomorrow I will feel better, and each step should and will from now on be preceded by some real mental preparation on my part.

I am now just days away from beginning a treatment that is going to systematically poison my body and I have no idea how to prepare myself for that. It is scary, but it is also wonderful, because hopefully these 8 visits wherein this ugly little portal into my veins is put to good use will eradicate any hope this disease has of setting up housekeeping in my body. I tied a scarf around the PICC line today and my good friend joked and said I looked like I had joined some sort of gang. It’s not all that crazy an analogy. I am preparing for a fight. This is just part of my armour.

I have talismans all over the place it would seem now. Every little charm on my necklace has meaning. My bracelet is from my sister. It's nice and simple. The writing on it is very fancy and makes it hard to see that it reads 'F#$% Cancer.' The scarf covers the armour. I can swim next summer.

I have talismans all over the place it would seem now. Every little charm on my necklace has meaning. My bracelet is from my sister. It’s nice and simple. The writing on it is very fancy and makes it hard to see that it reads ‘F#$% Cancer.’ The scarf covers the armour. I can swim next summer.

(My melt-down is done now.)

T.

SURGERY DAY (Or, The last time I saw my breasts)

My sister and I decided to spend the night in the hotel lounge the night before my surgery.  The bartender gave us a card. And some water for the cab ride to the hospital the next day.

My sister and I decided to spend the night in the hotel lounge the night before my surgery. The bartender gave us a card. And some water for the cab ride to the hospital the next day.

Surgery Day is a long one – and my sister and I have made sure it’s been preceded by a long night (won’t go into to many details here, but the bartender from the hotel lounge left us a card in our room – I’m fairly certain this doesn’t happen super often.) The rules for surgery are that you can’t consume food or alcohol after midnight the previous night, and although we did follow these rules, we may have also made the best of them. Thank you, sister mine, for helping to make what promised to be an evening of sporadic crying jags punctuated with long, concentrated periods of yoga breathing WAY more fun than that.

The approach is this: Today, every step I take means a box ticked. It means completing one shitty thing that I’ll never have to do again. Start with the injection of blue radioactive dye they put directly into my already-tender-not-long-for-this-world breast. The warning is something about a really intense bee sting and counting to ten. I chose the ‘look the other way and squeeze my sister’s hand really tight and stop breathing’ approach. It works. Box checked. Don’t have to do that again.

Then there’s this seemingly interminable wait, during which, for whatever reason, must be spent without makeup, jewelry or clothing. Surgery is scheduled for 1:00. How to spend the 5 hours or so leading up to a terrifying surgery? There is no good answer to this. I am nauseated, nervous, exhausted and unable to sleep. There is really no way to prepare myself for what’s to come. When the nurse comes to take blood, my sister and I are stretched out on the narrow cot that is our home for the day – something for which I was quietly thankful. There is very little traffic in our room, but I am touched and saddened  by the woman next to me who is reminded that she is not to have jewelry on, and who refused to remove her cross from around her neck. Even when told it will be removed regardless during surgery, she is adamant. I silently wonder why they need to tell her they’ll be removing it, and want to kick the nurse through the curtain. Give the woman something to hold on to. This is a shitty time.

My sister later posted a picture of two tigers curled up together when she talked about having spent the day curled up with her sister. I really wasn't sure which one to post.

My sister later posted a picture of two tigers curled up together when she talked about having spent the day curled up with her sister. I really wasn’t sure which one to post.

I ride out the waves of panic that come intermittently and by the time they come to get me to prep for surgery, I feel like I’m ready. If only there weren’t that huge weight sitting on my chest making it difficult for me to breathe. My sister kindly suggests that maybe there’s something they can give me to ‘relax’ me a bit. They assure me it’s coming.

Moments that will stay with me: 

The orderly that brings me upstairs tells me about her wife’s recent mastectomy done by the same surgeon, and how successful it was. This type of random kindness is really valuable. I hold on to her hand for a second and thank her while she assures me I’m in good hands.

My sister starts to follow us into the pre-op room, and the orderly shows her where to go, which is in the opposite direction. My sister doesn’t miss a beat. ‘I’m not ready to say goodbye.’ (Me neither, sister.) She is granted immediate permission to come with me.

The surgeons file in, each detailing how they are going to cut into me, what will be taken out, what will get put in, and how long each procedure should take. Any questions? (Well, 5 000 or so, but I have stopped processing at this point. Where IS that guy with the drugs??)

Guy with drugs appears. I think this allows me to find my funny enough so that when the plastic surgeon is on his knees in front of my naked body, drawing lines and swishes and perforated lines (ah…those are for cutting) I somehow manage to look down at him and tell him that the last time a man was on his knees in front of naked me, he did not have a Sharpie in his mouth.

That was the last time I saw my breasts. Image

Finally, some news that isn’t worse than I thought it would be.

So, the call came in from ‘Private Caller’ tonight around dinner hour, and as per usual it’s mayhem around here. I answer on the phone that I just dumped into the bathtub whilst trying to rescue one of my drains that had gone for a swim, and so I have no idea who it is calling me. Switch phones. Quiet boys down temporarily. Give up. Change rooms. Apologize to whomever it is who is exhibiting incredible patience with me on the other line.

Hello?

Hi Tanya. It’s Dr. (Insert name of surgeon who did double mastectomy, lymph node dissection and who informed me three weeks ago that she would call me the minute she had the pathology report in her hands).

(Stop breathing. Cry a little. Inhale sharply. Sit down. Stand up. Pace.)

Oh. Hi. Okay. I’m ready. Tell me.

(Preamble) She took out 17 lymph nodes. Two were identified as cancerous during surgery, which leaves me the very small window of one more cancerous lymph node before they classify me as Stage Three. This is terrifying.

Her news? 3 of said 17 nodes have cancer in them, the third literally containing ‘a couple of cells’ that are infected. They removed 6 – yes, 6 tumours from my left breast, all cancerous, and the right breast turned up clean as a whistle. All margins are clean. Go ahead and make plan for chemo and radiation, girl, and we have every reason to believe this is totally treatable.

Me:

‘So am I happy or sad right now?’

Her:

Well, I wouldn’t go as far as to say Stage Two is good news, but it’s what we were expecting, and certainly nothing worse.

Me:

I’ll take it.

YAY STAGE TWO!!!