Tuesday, June 7, 2011

the aftermath or it's all over but the healing

May 20, 2011 at 1:27am
There have been may times over the past two weeks when I wanted to sit down and write a note about the surgery, about my progress, about my mental stability or lack thereof, but all sorts of things prevented this simple task.  Things like being unable to sit at a computer or randomly falling asleep in the middle of a sentence or long stretches of whimpering as I lay on my back, struggling to breathe in the awkward position forced upon me by excruciating soreness in my abdomen.  But through it all, I wanted to write.  I wanted to put the next chapter down in print.  The chapter that starts with:

"I made it."

I beat those slim-to-none odds and even though the surgery that should have taken 45 minutes took a little over six hours... and even though I was strapped to the operating table and tilted at an angle with my head downward for all six of those hours... and even though my head apparently looked "like a pumpkin" when my family finally were allowed into the room... and even though the best estimate was 15% survival and 5% survival with no complications... I freaking made it.

Well, I made it somewhere in the 10% range.  There were complications.  Plenty of complications.  During the surgery - all the cuts were able to be made by the robots through seven little incisions - three on each side of my belly, one through the top of my belly button - but when the uterus weighs in at right around 3 lbs... another incision is required to get that sucker out of the abdomen. So I ended up with another slice on top of the 3 vertical scars already in place from my navel to my pelvis.  This one is lower, only about halfway to my navel from my pelvis, and I must say - it's uglier.  The others formed a nice, neat line.  This one is a grotesque wad of puckered scarification.  But it is healing.

In fact, I'm healing much faster than the doctors expected.  After all I went through on the operating table, no one expected me to be out of bed the first day, but I was.  In fact, I was out of bed and slowly making my way down the long hall outside my room.  3 laps that first day.  They were slow, painful laps, but they were mine.  And I relished every shuffling, waddling, penguinesque step.  Because being able to move proved that I was alive.

I had my doubts on that count.  Especially during the first night after surgery.  Mainly when I requested and was given the full dose of my pain medication.  Since I'd not had any reaction to the half-dose I'd been taking, no one expected me to have any troubles with the full dose.  That was our first mistake.  The full dose had a paralytic effect - I could not move my arms, my legs, my head.  The best I could do was suck in air and force it back out again.  Slowly and painfully.  Somehow I conquered the panic that threatened to overwhelm me at any moment, and I concentrated on breathing in and out.  Because if I didn't concentrate, I'd have stopped.  Nothing is as big a buzz-kill as being unable to breathe.  It took me half an hour before I could regain any peripheral movement, and by that point, I was exhausted from the struggle to survive and passed out into oblivion.  I woke up several hours later - once again in pain.  I called the nurse... told her I thought we should stick to the half-dose, and explained why.  By morning, I had been switched to a different pain management medication. Crisis averted.

Moving around triggered other issues.  I found that my hips and upper legs would go numb and pins-and-needles tingly, as though they were asleep.  I had pain that would shoot across my lower back causing me to freeze in place.  I had the worst urge to cough - but coughing opened up a whole new world of pain.  My belly was numb... on and off... and I had no feeling for several inches on either side of the central incision.

It's the little things that bring us through these dark times.  The little joys.  My surgery was on Thursday.  Friday night, for the first time in 18 years, I slept without a pad.  I haven't needed one since that night.  At least not for feminine hygiene reasons.  In fact, I had three packages of pads sitting at home.  What would I use those for now?  I need not have been concerned - there's always something.

My something came in the form of "copious amounts of drainage" - from a pinhole sized opening in the large incision, I would deliver a steady stream - not a trickle, not a drip, not a drizzle... no, a freaking STREAM of fluid.  As this was nothing new (we'd had similar drainage after my January surgery) we taped a maxi pad up against my belly and went on with life.

Let me back up a moment.  Remember that I mentioned no-one expected me to be up and around on Friday - the day after my slice-and-dice?  Well, that included the doctor.  She was somewhat shocked that I was sitting up in a chair when she arrived to look me over on Friday evening.  By Saturday morning I was doing so well that she took a cursory look and declared me fit to go home.  So I did.  6 hours of surgery on Thursday - and almost dying from a massive fever during recovery - and I was home by 1pm on Saturday.  So it's at home that we are dealing with this drainage issue.

It's inconvenient, yes.  But it isn't a "smelly discharge" - nor is it "oddly coloured" - and there are no accompanying redness, swelling, fever or chills.  We opted to deal with it on our own.  I waddled to the bathroom, sometimes as frequently as every 20 minutes, to change the pad collecting the liquid.  We waited for it to slow down.  It decided it had other plans.

My follow-up appointment was the Friday after leaving the hospital.  It was supposed to be a quick staple-removal and once-over and a short conference about the biopsies of the lymph nodes and uterus and staging of the cancer. It ended up being a little more chaotic.  I excused myself from the waiting room to go to the restroom.  I noted the drainage continued unabated, and therefore changed the pad and went back out to the waiting room.  Not feeling like sitting down, I paced around a little.  Finally, as time wore on, I decided to sit down on the small sofa beside Peter.  Mistake.

As I made the bending motion, my incision decided it was time to amp up the discharge.  I found myself, much to my embarrassment, standing in an ever-widening puddle of fluid.  I freaked out.  Peter did his best to help me maintain - but we had nothing in our little bag that would take care of this.  He finally went to the receptionist and requested a towel - she called the nurse - they whisked us back to a room... I was mortified and in a moderate state of panic.  That the "professionals" seemed to be ratcheting up their alert status as well only served to feed my own fears.

We were left alone so I could disrobe - Peter helped me get situated.  And we found out that my doctor wasn't even there - because it was supposed to be a quick check, her PA was there to look things over.  The PA examined me.  She has a disturbing habit of thinking aloud.  This time her thoughts ran along the lines of wanting to open me back up so she could see how things were healing inside.  I was adamantly against this proposition.  No way did I want her prying open my newly healed incision!  She triggered panic attack #2.  Wisely, she left the room to call my doctor - advising her of the situation and requesting that she come see for herself and decide on a course of action.  About 30 minutes later - I'm still draining like a pro, and my doctor arrives.  She is impressed with the level of healing, concerned about the level of drainage.  Her decision: to take a device that looks like a hollow knitting needle and use it to open up the pinhole I'd been draining from in order to facilitate the drainage.  She explained it like this: the adhesions (of scar tissue) that I have in my abdomen tend to hold the parts that need to touch to heal away from one another.  Because they open up these areas, fluid can collect in the gaps.  This fluid needs to come out so the parts can touch and heal up properly.

Still, I wasn't expecting the size of the device she proposed using.  By this point there were six of us in a room roughly 6'x8'.  It's crowded.  I'm anxious. And the doc is wielding a big plastic tube and proposing to stab it into my tender tummy.  Panic attack #3.

But eventually I relax.  And she slides the implement in (and I don't even feel it - at all - in part thanks to the overall numbness of my abdomen) and this releases the trapped fluid in an even faster stream.  The advantage of this?  I am directed to take at least one warm shower daily - preferably more... and to have belly massages to work the fluid out.

Wait - warm showers and belly rubs?  This is one thing I can agree with our chihuahuas on - belly rubs and warm showers are all sorts of awesome.

An appointment is made for the following week (for today, actually) - and we go home.  The nurse was so impressed by the use of the maxi pads that she is now going to advise all their patients who have drainage to use them - because they whisk all moisture away from the skin and you don't have to deal with the associated problems of skin in prolonged damp conditions.

I expected the drainage to slow down over the next few days.  In fact, I'd predicted that it would stop completely by Tuesday or Wednesday.  Of course my body wanted to be difficult.  I had a teaser on Wednesday - totally dry all morning and through early afternoon... then suddenly a geyser erupted, and I found myself in an embarrassing situation at my mother-in-law's house.  Guess who now takes a change of clothes with them everywhere they go?  That would be me.

Thursday - today- started off the same as Wednesday.  Nice and dry.  My appointment was at 3:30pm, so we decided to head to Gainesville early, have a nice lunch beforehand, and then go to the doctor.  Made it through lunch just fine.  There must be something about that darned doctor's office... because as soon as I was called back... here came the waterworks.

It wasn't nearly as bad this time, and between Peter and myself, we managed to present clean and mostly dry to the PA.  She approved and sent us on our way with a new painkiller prescription and an appointment for 4 weeks from now.

Why the new painkillers?  Well, I have percocet.  They worked for a couple of days, though they knock me out pretty effectively.  But after that, even when we went down to 1/2 a pill - I end up with a splitting headache and very little pain management.  My new pills are loritab. I don't think I've ever had them before.  The doc says they contain a different formulation of codeine that should help me avoid the headache.  I don't think she's ever had a request like mine before - I wanted something milder than the percocet (to avoid the headaches) but stronger than tylenol (because that doesn't touch the pain)... she was a little confused for a bit because I didn't just ask for something stronger than the percocet.  Heck, I don't like taking the pills I'm already choking down - why would I want something stronger?

So, that pretty much catches us up to current events.  I no longer have ovaries, fallopian tubes, uterus or cervix... and I no longer have cancer.  I guess it's a pretty fair trade.  What I do have are cases of uncontrollable tears ... when I see baby outfits or infant toys and realize that even with a miracle it's no longer possible for me to grow another baby.  It makes me realize all over again how glad I am that I chose to keep my son.  But the question of "am I still a woman" can wait for a later note. Today, I'm just glad that for once I trumped the odds... Today, I made it.

Cancer-free never felt so good.

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