Thursday, June 22, 2017

It's Going To Be Worth It...

I'm struggling - even as I start typing - with how to write this entry. I so badly want to put on strong girl panties and talk about how great this is to be done with the surgery - How happy I am that it's over. Truth is though...I can't put on my strong girl panties... like I literally cannot. They're too uncomfortable. I've been living in hospital grade mesh undies. Those of you that have had children or your spouse has had a child - you know what beautiful pieces of undergarment I'm referring to. They're stretchy. They're airy. They're magnificent.

The undies are covering about 40 staples. They stapled me shut. I'm not sure why I find that so disturbing. They're up around my belly button down past my c-section scar almost to my hoo-hoo. Believe it or not, that's not even the part that hurts. I've been told maybe I'll feel better once the staples come out but I'm not sure it'll make a difference. The docs did a lot of work inside me. They moved some things. They removed some things. I got word today that the pathology reports show that they got negative margins around the cancer they removed. You know what that means?  I'm cancer free. I'm freaking cancer free.

Why am I not screaming it from the rooftop? And celebrating? And calling everyone I know? Because I have a hard time functioning as a human right now. Cancer free comes at a price. I barely get out of bed. 95% of my day is spent either being uncomfortable or in pain. I'm not telling you that to make you feel bad for me. But I thought I'd be as real as I can in this post. Why start sugar coating my feelings now?

After the surgery, I spent 2 days in IMCU and then the remainder of the week in a regular room at Roswell. Throughout my stay, they wanted me up and moving around. Which was fine but every time I got up, it was at least a ten minute process to organize all my tubes and things to where I could move around - and then the same when it was time for me to lay back down. I had a NG Tube that sucked the contents of my stomach out through my nose - that was a treat. I had a drain coming out of my abdomen. They emptied this multiple times a day. Every time they cleared the tubing it made the suction super strong and it full strength sucked out my insides. No sugar coating. That was a bitch. You can imagine what it felt like getting this drain pulled out. "Just a little pressure" the doc said. That was cute. After the surgery, they packed my hoo hoo with gauze. What goes in, must come out. It was like giving birth again when that came out. Good morning to you too, doc. I also had a catheter for 10 days. 'Nough said there. Then all of the IVs. Two in each arm and one in the artery in my neck. This part scared my kids. They barely came near me when they came to visit. Who blames them? Mommy has a giant device hanging out of her neck - that's not normal. I thought for sure that when they took it out I'd have blood squirting across the room like a horror flick. I didn't. It was ok. Phew.

One night I was up walking and I was feeling pretty good (thanks, meds). I kept passing the same nurse in the hallway. At one point he said, "you doing the mile?"  I laughed. He didn't. When I asked if he was serious, he said a mile was 33 laps around the floor. I was on lap 13. I could do 20 more. Challenge accepted. I did it. 33 laps. I only did that once though. Ouch.

For those of you that have birthed babies (my fancy panty - wearing friends), remember that first time you pooped after giving birth? Remember how scary that was? Multiply that by 100 and you'll kind of understand where I'm at - but on a daily basis. I'm about 2 weeks post surgery and going to the bathroom is so damn scary. I'm going to stop there and not go into anymore details. You're welcome.

I spend most of my day laying in bed. I usually will only sit up when I'm eating. It hurts to sit - even in bed. And I can only stand for so long. So laying down it is. I feel pathetic. I know I need to heal but shoooot this sucks. This really really sucks.

Because I'm spending so much time laying in bed and not moving, my back issues from radiation are returning. I did a lot of work last year to help my back feel "normal" again after it was destroyed by radiation. Physical therapy, massage therapy, personal training to build my strength - all of those were needed and all of them helped. But now I feel back at square one. So it's not just pain from the surgery, but my back is a mess on top of it. I'm eager to get back to physical therapy and everything else so that I can feel better again but I'm still waiting for the day I wake up really ready to get to work. This is unlike me. I'm a fighter. I normally push myself harder than I should. And I'm always up for a challenge.

Though I currently feel defeated, I know this hasn't beat me. I'm not down for good. I've just been knocked on my ass and it's taking me extra long to get my footing back. I mean....I'm cancer free. I beat this. Again. I'm 2 for 2, cancer. You shitbag. Bite me.

June 10, 2017
Day after surgery

Cheery little visitor

June 16th, 2017
My escape

My little buddy's last day of kindergarten.  I was so, so uncomfortable. Fighting to put a smile on my face. I was hiding my catheter in a bag behind him so it wasn't in the picture.  This is also the day I got that stupid thing removed. Thank goodness.

Bedside entertainment

My bodyguards

Thursday, June 8, 2017

Summer Vacation

What I'll Do On My Summer Vacation
by Lesley Maloney

Remember that BFD surgery I was scheduled for?  It's tomorrow.  Thought I should let you know.  Big day. Big surgery.  Am I scared?  No. That's probably weird.  Honestly, it's been the most common question people have been asking.  I think I'm wired wrong.  I seem to be the only one not scared.  "If I were you, I'd be terrified" - yes, someone actually said that.  Thank you.  Oh and while we're on the subject of weird things to say to cancer patients...please don't tell me to cancel my surgery and just use essential oils instead.  That happened too.  I'm not kidding.  Thanks, but no thanks.

 I'm not scared to have this surgery, I'm annoyed.  I feel freaking great.  I've been working out and playing with my kids without being exhausted.  I've built up my alcohol tolerance again - It was pretty low there for a while.  This surgery will change my life and being in recovery this summer will start me out fresh...again.  And for that, I am annoyed.

You're going to read through this and say, "but Lesley, you never told us what the surgery is."  That's right.  There's a couple reasons for that.  The biggest is that the docs don't really know what they're going to do.  Weird, right?  Worst case scenario is pretty crazy and best case scenario is still serious, just less crazy.  They won't know exactly what they're dealing with until they cut me open.  Someday I'll share the details, but today is not that day. I'm mentally prepared for the worst case scenario.  I'm fine with it.  And I think that freaks people out.  But I'm not the kind of person that sits around feeling sorry for myself.  What a waste of time.  It's going to be tough to get through and I know that.  But, shoot, life is an adventure. This is the life I've been given and I'm going to live it the best and most fun way I can.  If you've been around me in the last few weeks, you know I've been joking about some pretty serious stuff.  I'm happy to be surrounded by people that can laugh with me.  Boy does that make things easier...and more fun.

What happened to that second opinion? A few weeks ago I got a call from my doc at Sloan Kettering.  She said she had good news and after reviewing everything I sent, there was a surgeon in NYC that thought he could do a less radical surgery than what Roswell wanted to do.  Cool!  I booked a flight that night for the following week.  The morning I was set to leave, I got notice that my flight was cancelled.  Awesome.  I'll skip the details, but I ended up renting a car and driving down to NYC by myself - just hours after my flight was cancelled.  Fortunately, my big brother was there for business so he met me and we want to my appointment at MSK together the following day.  Unfortunately after being examined by the doc, he ended up recommending the same surgery as Roswell.  That was a bit of a bummer, but I'd rather have surgery in my hometown anyway so it wasn't terrible news.  Plus this makes them 2 for 2 with agreeing with Roswell's plans for treatment.

Side note: For those of you that have negative things to say about Roswell...I'm going to repeat that...This was the SECOND time Sloan Kettering agreed with the treatment plan that Roswell suggested.  Let's add that to the list of things to keep to yourself: If you have negative things to say about the place that is working on saving my life...keep it quiet.  Thanks.  Yes, that makes me cranky.

Once I got back to Buffalo, I set up all may appointments at Roswell to prep for surgery.   Lots of appointments, paperwork, and question & answer sessions later and we're ready.

12 hours from now I'll be on the operating table.

If you know me, you know I don't like to ask for help or accept help.  That's super hard for me.  But I've promised to be better with that.  So this is a blanket thank you in advance.  Thanks to those that have offered to help with the kids, and make us food, and clean, and all the other things you do for sick people.  I've said it a million times that I have the best support system in the world.  I appreciate every little bit.  Thank you.

I promise to update when I can after the surgery.  Hopefully for entertainment sake it'll be when I'm all doped up.

The best part of all of this craziness?  When the surgery is over, there's a damn good chance I'll be cancer free.  And you know what that means?!?!?!  We PARTY!!!!  I'll be a bit before I'm fully recovered, but you can bet your bottom dollar that we'll celebrate!

Just because.
Photo cred: Ben Richey, Roswell Park

Second Opinion Trip Take II

My Livestrong Coaches that helped me get back to kicking butt!

Last day at work for a few months. Lucky to have super supportive coworkers who double as amazing friends!