Unapologetically saying ‘Uncle’ (Or, why I’m taking some time to breathe)

 

 

 

 

Before you start reading, be warned. This may turn a few stomachs.

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And yes. That’s my stomach. Replete with evidence of poor decisions made in my 20s. This picture was taken the day after I returned from Winnipeg last week, where I went to have those giant hemovac drains removed (Yay!), check out my first mastectomy ‘bra bar’ (Gulp.), and share some good food and wine with my mother, my companion for that trip (Yay!).

After the drain removal, I asked the physician’s assistant to explain the abdominal flap surgery to me. He ordered me to bare my belly, took out a Sharpie, and started sketching. The rule of thumb for this surgery is, apparently, that what you can pinch, you can take. The lines are cut lines. The line down the middle marks the divide between what will become two breasts. Now, think Geometry – cut each of those triangles out, and flip them 90 degrees toward the middle of my body. Attach, and fashion into breasts. Re-attach edges gaping hole left where triangle once was. Doesn’t that sound fun? I have been ordered to eat lots of pasta and ice cream and ‘fatten up’ before I have the surgery done.

I know this is the correct surgery for me. Believe it or not, the risk factors are very low. Yet, as I type this, I know a fellow breast cancer survivor sits in hospital, where she has been dealing with complications from the exact same surgery, and where she has been since the beginning of the month. Healing, as I have learned, can be very complicated.

I don’t want to be back in hospital. I don’t want complications. I don’t want to sit on the couch all day in constant recovery mode. I don’t want to feel like a pharmacy, taking a handful of pills – antibiotics, pain killers, acid reflux meds, you name it, every few hours. I don’t want bandages and stitches. I don’t want drains. I don’t want to ‘fatten up’ right now. I have decided that I need to heal from this latest setback, in more ways than one. I don’t want to write off another summer indoors, letting other people shuffle my kids off to camp after camp to keep them busy because I’m too tired-sick-or-sore to take care of them myself.

The sun is starting to shine. The days are getting longer. It is finally starting to get a little warmer out there, despite some persistent cold snap happening this week. My body is telling me it’s Spring. Tomorrow I get stitches and bandages removed. I feel like I’m surfacing. I can hug my kids without wincing. My youngest can climb up on my lap and I don’t have to banish him. I can put my arms around the people I love without them having to be ‘gentle’.

What I want is to live my life for a little while. The little voice inside me that whispered that there are options, that I could wait and do this reconstruction thing later has gotten progressively louder. I have spoken to women who have chosen no reconstruction as a permanent choice, and their strength of character humbles me. I don’t think I can do this permanently. But right now, I want back in my body. I want to be free of pain and discomfort. This summer, I’m going to swim, hike, paddle, yoga, maybe even run. I’m going to camp, road trip, have weekend getaways with my companion. I’m going to cook, clean, fold laundry, put dishes away in cupboards that are up high. I think I am taking a break. I need some time to get strong again before I do this surgery.

To that end, I went shopping this weekend and found some lacy things that are so great they almost trick me. It actually occurs to me that my new undergarments are not completely dissimilar to what many of us women generally sport. I just may become a little more ‘attached’ to mine.

La Vie en Rose actually has a pretty good selection of what I need at this point. For someone as fond of lacy things as I am, this was actually kind of a big deal. There is a serious gap in this particular retail 'niche'.

La Vie en Rose actually has a pretty good selection of what I need at this point. For someone as fond of lacy things as I am, this was actually kind of a big deal. There is a serious gap in this particular retail ‘niche’. Happy!

 

I have looked at myself in the mirror so often I’m almost used to my new body. Talked it out a lot. Cried a lot. Have taken some pictures. Looked at old ones. Gotten lots of much-needed reassurance.  I think I’m good.

And, when I am ready, sometime in the colder months, when it will feel normal to curl up on the couch for awhile, when the days are short and dark and I want to hibernate anyway, I will be ready for another surgeon to draw those cut lines on me and go for it.

For now, bring on the big melt. I have some living to do.

Starting from scratch, and digging just a little deeper.

After last Wednesday’s drama, I was pretty much convinced my week couldn’t get any more exciting. I was wrong. I have spent the past three days trying to figure out how I could possibly find a positive spin to put on this week’s events so that I could share it. Let’s start with the story.

This past Wednesday I returned to Winnipeg, this time with my mother, who optimistically refused to pack an overnight bag because she was so certain things were going to be okay this time around. That despite the trauma my incision and implant endured last week, I would be healing up nicely and nothing worse could possibly happen. I insisted we pack toothbrushes and toiletries, just in case, and off we went.

I am, for many reasons, going to gloss over some of the gory details. Long story short, the doctor took a look, put me squarely on the negative side of the ’50-50′ statistic, and gave me my options. I could a) wait until the following day to go under general anaesthetic to have both implants removed, or b) take a generously offered Ativan and have another ‘awake’ surgery to have both implants removed 30 minutes later. Both options involve healing up for a few months and having abdominal flap surgery done as the other option for reconstruction.

I have been thinking a great deal about some of the women I know who have opted for no reconstruction. I have always admired their courage. Have always thought about how difficult a choice that must have been, how strange a thing it must be for them to get used to seeing themselves in the mirror changed like that. I opted for immediate reconstruction back at the time of my mastectomy because I really didn’t think I had it in me to deal with chemo, radiation, and facing that huge change in the mirror all at the same time.

Wednesday afternoon marked what may have been the first time I truly saw how cancer has changed me physically. I opted for choice b, took the Ativan and a pain-killer, and dutifully turned my head to the opposite side from where the surgeons worked, and breathed my way through a second awake surgery in a week. Said ‘ouch’ when it hurt so they could inject more local anaesthetic, clenched and unclenched my fists and made every effort to relax my shoulders while they removed the offending implants, cleaned me out and stitched me up, unceremoniously and with no effort at neatness, because this was a temporary fix. There were tears this time around; I’m not going to lie. The doctor assures me they are going to do everything they can to achieve the result I want, down the road, when enough healing has taken place.

My mother and I made it to a hotel room in the hotel attached to the hospital, just barely, and had a good old-fashioned-mother-daughter melt-down. I cried because I was tired. Because I’ve treated this voyage like a marathon, and have conserved my energy for the finish, which I thought I was nearing. I cried because it was really, really difficult to look at myself in the mirror. I cried because my plans for celebrating the end of this year are all likely trashed. My mother cried because she feels my pain like it’s her own. We do this as parents. My heart broke for her that night just as much as it did for me. I wish I could have sheltered her from that moment. I wish I could have powered through it like I have other moments. I could not. Sometimes it’s okay to fall apart. When you have to start from scratch, I guess it’s necessary to flush out all the sad and steel yourself for what’s to come.

So. I’ve spent the past few days wrapping my head around this new reality. There are some important details on which I need to focus:

This isn’t a cancer complication. This is a glitch in the reconstruction process, one which is now going to provide me with three months’ reprieve and rest and healing time.

The abdominal flap surgery will provide me with a permanent solution, one which is made up of my own tissue. There won’t be anything foreign puffing up my chest. There won’t be a need to swap them out every ten years or so and worry afresh about complications. The whole ‘implant’ thing has never really sat well with me anyway.

The complication rate for this surgery is 1-2%, compared to a complication rate of about 38% for implant surgery on radiated skin. I am feeling much, much better about those odds.

Traumatic experiences like the one my companion witnessed last week and the one that my mother witnessed this past Wednesday really do change one’s perspective. They can help us sift through the trivia and grasp on to what’s really important. They can bind us together. They have. (Bring on date #3.)

In the meantime, if I never have to gaze up at one of these breast-shaped lights again, it will be too soon.

When you have 'awake' surgery, you're under one of these lights. Note breast-like shape.

When you have ‘awake’ surgery, you’re under one of these lights. Note breast-like shape.

And, although I’m sure there will be drains sported after my abdominal flap surgery, I seriously hope they go with the little grenade-shaped variety I have had in the past, and not these jumbo hemo-vac specials.

Giant hemo-vac drains have been enough to keep me holing up indoors this week. Here's hoping they get removed Wednesday.

Giant hemo-vac drains have been enough to keep me holing up indoors this week. Here’s hoping they get removed Wednesday.

Inhale. Exhale.

Onward.

 

Roller coasters, rips and revelations (Or, how to truly reveal one’s character in two days)

A friend of mine was coming into town last week for a few days. I was really looking forward to the visit – had planned to bust out my inner domestic goddess on a few evenings and catch up with someone who’s been quietly supporting me through this journey of mine from far away for the past year. I even called it a date. As the saying goes, though – the best laid plans…

I have been sending a weekly ‘photo shoot’ of my incisions to my surgeon in Winnipeg so that he can keep a close eye on how the healing is going. Last week’s shoot was met with the request for me to fly in Wednesday to Winnipeg because he wasn’t happy with how things were looking. Acrobatics followed. Quick decisions were made, and my companion ticket was scooped up by my friend, dinner postponed, and lots of laughs had about the last-minute nature of the ‘date’, jet-setting, etc. I was hoping for a quick appointment, for the surgeon to tell me to continue to keep a close eye on things, maybe put me through another round of preventative antibiotics and to be on my way. Flights were booked to return to Thunder Bay that night.

‘Oh, shit.’ were the words my surgeon first uttered when he took a look. Not exactly what I was hoping for. My friend sitting in the waiting room of the clinic was summoned, quick decisions were made, and what followed was a complete and total whirlwind that lasted a full two days. The small part of the incision that I thought was post-radiated-skin-healing was actually exposed implant, which, as I quickly found out, means emergency. What it meant for me was handing my phone over to my friend, requesting, mid-step and over my shoulder, that he call my mother and let her know plans were changing. That I was going to have a procedure done right then and there, and we would keep her posted.

The plan was to attempt to salvage the implant. To do this, they needed to re-open my incision completely, flush out the entire cavity with about two litres of various antibiotic fluids and saline, scrub the implant and put it back in and close me up again. What I didn’t fully realize until it was in process was that I was going to be fully and completely AWAKE AND UNMEDICATED for this procedure. Basically I was told that I was going to get local anaesthetic, and if it hurt I should say ‘ouch’ and they would give me more. (And yes, I said ouch. A few times.) Apparently it was an unusual procedure, because about six plastic surgery residents were summoned to watch and learn while my surgeon taught them about how far in to put the ‘skin hook’ and some sort of rake. About the layers of muscle and skin he was cutting into and manipulating. (Did I mention I was AWAKE for this?) Clenching and unclenching my fists and tensing up with the pressure I felt through the entire procedure, I was encouraged to ‘relax’, at which point I strongly encouraged someone to go and get me Ativan. Or something. Nothing came. I tried making a few light jokes about how I actually wished the surgery wasn’t happening to my body because it actually sounded quite fascinating. Breathed my way through the feeling of my skin pulling and hands twisting in my body, and attempting all sorts of self-talk to try to mentally make it through to the end of the ‘procedure’, which ended up taking about an hour and a half. At one point I asked one of the residents to keep my companion up to date, and information went from me to him to my mother and somehow everyone stayed relatively calm. This is how I handle crisis. I keep it together during, and then generally fall apart afterwards. This was the case in this situation. When the procedure was done, and I was left in the room to regain my composure (but not my dress, because I was now attached to a drain and lots of padding and found myself in Winnipeg with my companion, two hospital gowns and a lot of apologies for such a crazy turn of events.

The surgeon decided to admit me for IV antibiotics, and as we were walked over to the other end of the hospital to my new room by the nurse, she made small talk with us, asking us the general questions one usually asks – and when I looked at her, kind of helpless and in some sort of post-traumatic-shock-I’m-sure, and informed her that this was kind of a second date, there was silence, and then everyone in the elevator had to laugh and give that the moment it deserved. Great story, right?

It gets better.

Installed in my room, trying to iron out plans for the flight back that night, deciding whether companion should stay or go, trying to aim for laughter instead of tears and generally becoming accustomed to the reality of the situation, I noticed that the spots the team of residents had just touched and gushed about how ‘nice and soft’ the freshly stitched-up breast was, etc, etc, was now rock hard, and seriously deformed, and growing before my eyes. Alarm.

“Something’s wrong.”

I sent my companion to fetch the nurse, and what happened next is all a bit of a blur. The room filled up with people, all of whom were moving quickly. Loud voices – announcing my blood pressure changes. Booking OR. Immediately. No time to remove make-up. Taking off my jewelry. Bewildered companion banished to hallway. Three grown men pressing hands, CPR-style, onto my very sore and now very-free-of-any-anaesthetic breast to stop bleeding. Two IV ports hurriedly jammed into my right arm. Endless questions about when I last ate. My weight. Resident talking about the visual of blood rushing into drain.

Panic. Finally I got someone’s attention. It would sound like I had everyone’s full attention, but at that point my body did. Not my panic.

“Can someone please tell me what the worst case scenario is here??” I asked.

Someone finally leaned over me, because I was being pressed into the hospital cot so hard I was struggling to breathe, and told me that they would bring me into the OR and try to save the implant but it might be lost. That they might have to start from scratch. My response: “Is there any chance my other organs are being affected by this bleed? Someone tell me.” Then another nurse entered the room, just having spoken to my surgeon. The bleed could, in his estimation, only be coming from a spot where he cut into muscle, at ‘about two o’clock’. I told them that’s exactly where I had noticed something happening. The room calmed, pressure bandages and packs were applied, OR was cancelled, and my companion was brought back into the room and taught how to apply pressure, at two o’clock, by the nurses, and I was finally given some painkillers.

Operated, pressured and wrapped. Not exactly the outfit I would have chosen for a second date.

Operated, pressured and wrapped. Not exactly the outfit I would have chosen for a second date.

As the night went on, I was granted just a little more excitement via an allergic reaction to one of the antibiotics they were giving me through IV. This was noticed by my totally overworked and very alert companion, who slept fitfully in a chair by my side all night, and who, I’m fairly certain, has never had a second date quite like this one.

My gratitude overwhelms. Thank you for stepping up. For letting me fall apart. For holding my hand through panic attacks. For laughing while you put blue-paper-slippers on my feet because I couldn’t reach. For walking my IV stand to the washroom for me. For washing my hair, for finding me coffee and food not-from-hospital. For unflinchingly emptying my drains. For watching for reactions to antibiotics. For making the tough phone calls to my family and friends. For being there, 100%, in the strangest, mostly unlikely situation I could have imagined. For all of it. Thank you.