Return To The Big House

I'm writing this in bed. My own bed. Why does that matter? I just finished a 5 day stint in the big house and last night was the first time I slept in my own comfy bed. I went to Roswell for an appointment last Thursday and didn't come home until Monday. Yes, you read that right.

I tend to put on a strong face and push my way through tough situations - probably more often than I should. I have been having issues with pain since the surgery. At first they said it was a pain expected with the surgery I had. But it wasn't getting any better. I tried so hard to muscle my way through the pain for weeks but my body ended up just giving up. It couldn't be strong anymore.

Thursday morning, before my Roswell appointment, the pain was so bad I had a panic attack. Ever had one of those? It was scary and unexpected. I think it was the point where my body said no more. It was shutting down. The pain meds just weren't working. And I couldn't keep my strong face on anymore.

My pain was confusing to my docs. This wasn't a normal response to the surgery. They wanted to do a special test but it couldn't happen until Friday because it was something that had to be prepped for 24 hours. Because of this and the fact that I couldn't get the pain under control, they admitted me. The next morning we did the test and it came back normal. Which is good but bad at the same time. There was nothing abnormal, but then that leaves us with no answers again.

They decided they weren't going to send me home until we could get the pain under control - to the point where I was comfortable and could handle it on my own. I ended up being set up with the pain management team. The Dream Team! These guys were so thorough with figuring out my pain and explained how different pains have different treatments. I knew with them I'd get the help I needed.

They suspected I have nerve and muscle damage from the surgery. The good news is, they're playing with my meds and getting me on a plan that will help me function like a normal person. This trial and error is why I stayed in the hospital for 5 days. They needed to make sure what they were giving me was going to work. The bad news is, because it's nerve damage, my recovery time has gone from days and weeks to months and years. Nerves take quite a bit of time to heal. Thankfully the meds we're working on will help me return to a functional human while I heal.

So this is my story. I thought I'd feel better by now, but I'll learn to adjust to this new life. My birthday is coming up on Monday and I usually celebrate for the whole month! Instead, I'm going to celebrate this Friday. I'm going to ring the bell at Roswell! My birthday definitely isn't ruined. I'm turning 35 CANCER FREE! That's probably the best birthday gift a girl can get.

If you'd like to celebrate with me, be in the main lobby of Roswell Park at 4pm on Friday as I ring that bell.  And dont forget to wear your red shoes!!!

I was able to escape and walk around in the garden while I was there. It's such a pretty space! This is me...in my pajamas.

Family selfie in my room. My favorite visitors.

My hubby and kids brought dinner and we ate together in the garden. Then we watched the kids play. It made my heart very happy.

Baby time is healing time! My sister and nephew came to visit in the garden, too!

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

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 mean...it'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!

Update...Kind of...

Hi. It's me. The answer to the age old question "What does it mean to have cancer?" is....It means you do a lot of waiting.  The last 6 weeks have been full of tests and detective work to figure out if I still have the cancer or not.  That's annoying.  A PET scan, an exam, a MRI, another exam under anesthesia and 4 biopsies later....I still have the cancers.  The good thing is the chemo did a good job of shrinking it.  The bad news is, it's still not in an ideal location for an easy removal.

"What does this mean?!?" Calm down, I'm getting there.  The doc wants to take it out.  If we do this, it would be a BFD.  BFD means Big Fuggin Deal, for those of you playing at home.  So, like last time, I've called in reinforcements.  The doc I went to see at Sloan Kettering in NYC last year, for the second opinion before my chemo, has agreed to review my case.  Super cool.  I will have her opinion soon and we'll make the decision on what we'll do.  Til then...we wait!

So there it is.  It's been hard to update because I haven't had the solid answers I've been waiting for.  And we're still waiting...but there's a light at the end of the tunnel.

In other news, I'm enjoying feeling normal again.  You know what your body feels like when you have cervical cancer?  The same as it feels like without cervical cancer.  That's weird.  I mean, I've packed on some pounds from the chemo and I'm not in the best shape anymore but, hell, it's fun trying to bring it back!

I've joined a class at the YMCA called Livestrong.  It's a class for cancer patients/survivors.  We learn how to adapt workouts to our new bodies and they bring in speakers like dieticians and doctors and other supporting figures.  It's pretty great.  6 weeks ago I had a hard time climbing too many stairs without getting dizzy and exhausted.  Tonight I spent 30 mins on a treadmill and went over 2 miles.  One of those miles I ran non-stop!  It's no half marathon, but I felt pretty damn good!  And it's nice spending some time around people that share some shitty circumstances.

In case I forget to mention it in another post someday, I'm so darn grateful for all the people that have come into my life because of this stupid disease.  Liz, in my Livestrong class, is my age.  To have someone to talk to and who can relate to some of the same situations...it's a game changer.  I'm so grateful for that new friendship.  And the massage therapist that does oncology massage that I started seeing last year to help with all my issues from radiation...guess who I'm having lunch with this week?  She's a great LMT and an amazing person.  Janice, the incredible woman I met during the Mighty Niagara half marathon last year - she's been a major player in my support staff and I'm trying my hardest to pay forward the support she's given me.  And the people that have reached out to me - whether it be through Facebook, email, sent cards/food/etc....you've made my heart so happy!  I'm beyond thankful for every bit of support and love.  I have the best family and friends and I come from the greatest little town.  You Gasport/Middleport/Roy-Hart people know how to show some love.

Thank you.  Thank you.  Thank you.

May 2017 - Biopsy Selfie 

(before they knocked me out)

Mother's Day 2017

Layla - Chief Support Advisor

Being Bald Is Fun....Do It With Your Friends!

Bald for Bucks.  It's easy, right?  Raise some money and shave your head. But it's so much more than that.  Wednesday was a party. A celebration. All these people came together to raise money for this amazing institution that is helping to save lives.  They sat up on the Roswell stage, in a row, and gave up all their hair.  Men, Women, Fathers & Sons, Doctors & Nurses.  It was so cool to see.  There were families that took part together - and have done it together for years!  To think of all the kids that do this at their schools. I believe over 50 schools participate in the Bald for Bucks program. In a time where peer pressure and bullying is so strong,  these young boys and girls are walking the halls of their school with no hair because they, too, wanted to raise money for Roswell Park.  Western New York is amazing.  Hearts of gold.


This year I started a Bald for Bucks team - Red Shoe Adventures Team, of course.  The four of us raised over $2,000!!!  Thank you to all that donated!!

From left to right: Mike Schuler, Alex Schuler, Glenn Maloney

I was honored to have these guys up on stage for me...for their family members...and everyone else effected by Roswell's services.  Red shoes!!

The Roswell team was there to take before and after pictures of everyone.  The guys got theirs and I took an "after" shot, but I was a little bummed I didn't have an official "before" shot.  Luckily, a lovely girl with beautiful curly hair - and the willingness to play along with silly ideas - helped me recreate a "before" shot...

 

Photos courtesy of Roswell Park

From the Red Shoe Adventure team to you, thank you for the love and support throughout this journey.  For those of you that donated, thank you for helping us honor Roswell Park Cancer Institute.

Photo courtesy of Ben Richey, Roswell Park

 

Photo courtesy of Ashley Snowden

Photo courtesy of Roswell Park

Chemo Shwemo

I missed having my hair today for the first time.  It probably would've been frizzy and messy and I probably would've just put it up to go out with some friends tonight.  This was a first because I've pretty much been used to it being gone now.  It's nice being able to sleep in every morning because I dont have to wash it or style it - which, let's be honest, only took 2 minutes anyway - curly hair is the best. When I first cut it, then shaved it, I would still go through the motions - out of habit.  In the morning I'd walk in the bathroom to shower and I'd still reach for my hair to take my ponytail out.  Or I'd put a scarf around my neck and reach back to move my hair...but it wasn't there.  But now i'm used to being a baldy.  I have a few little sproutlets growing up there, but nothing substantial yet. I'll keep you posted.  I'm sure it'll be a party when the crazy curly mop grows back.

At the event I was at tonight a woman came up to me and introduced herself.  (I immediately panicked and thought it was someone I should know, but didn't remember - chemo brain is real, all). Anyway, she looked at me and told me she was in my shoes 5 years ago and that I was beautiful with my bald head and that everything would be ok. She cried. I cried.  I hugged her...and spilled my wine....and my food.  Her name was Holly and as long as the chemo brain allows, I don't think I'll ever forget her.  If you think you might know Holly, tell her thanks....(and sorry if I spilled anything on her).

There's good peeps out there.  I'm a lucky, lucky girl.

So even though I'm a rather happy person, i haven't been super sunshiney through all of this.  I fell into a rut of not wanting to write for a while.  This happened last year during treatment too.  Cancer treatments make me bitter.  When I'm TOO bitter, I sound really cranky and no one wants to read that.  Right now im only a little bitter...and I've had some wine...soooo there's that.

The chemo sucks.  I've had 4 out of my 6 scheduled treatments so far.  Only 2 more - so I got that going for me.  I go every three weeks.  The chemo knocks me out for a solid week and then I feel like myself for about 2 weeks and then we do it all over again.  When I say "knocks me out", I mean it makes me feel like complete garbage.  Luckily I'm not puking, but I get nauseous.  And I get restless legs - great for when you feel like doody and you just want to lay down.  I get neuropathy - where I can't totally feel my fingers and toes.  My head is in a constant fog and I'm exhausted. But other than that I'm totally fine. Ha! Now, if you know me, you know my family is the most important thing ever.  Well, let's just say, during my hell week, I wouldn't mind being on an island. Alone.  I love my husband. I love my children. I love my family.  But it's hard being a functional human during this time.  I put on a good front for the kids because no one wants a cruddy mommy.  And I put on my adult face and go to work when I don't want to(don't we all).  But chemo is kind of an asshole.

It takes 7 hours. 7. 7 hours of drugs through an IV.  It's not all terrible. We don't have cable at home so while I sit there I get to watch bad reality TV on Bravo. You have to take the perks where you can get them.  One of the drugs I get while I sit there is Benadryl.  They give me a bag of liquid Benadryl.  A bag.  Puts me right to sleep!  Which sounds like it should be enjoyable, but they're also pumping me with fluids, so I have to pee a lot.  And the pump constantly beeps when the meds need to be changed.  So I kind of just sit through the afternoon in a drunken/sleepy state.  I'm entertaining for visitors, so if you need a place to spend your lunch break every 3rd Thursday, I'll save you a chair!

Each round leaves me feeling a little crappier than the last.  I've grown to dread them as they get closer but I find that I get through them easier if I compare them to a long run.  The day leading up I'm thinking of excuses to get out of it but I'm thinking of how great I'll feel when it's done.  A couple days into hell week when I'm feeling my worst is like the middle of the long run.  I question why I'm doing it. I'm recognizing that it would be easier to give up, but more rewarding if I don't.  I think of all the other patients/runners that do this and don't give up.  I remind myself that this feeling isn't forever.  Then the days start to get easier and it's like you're nearing the finish line - I'm happier that I'm almost done and I'm excited to feel better again.

This also shows you that you don't want to be in my head while I'm running.  I swear I enjoy it, I really do, but there's always pep talks.

So that's my update.  Thank you for reading.  Thank you for your positive thoughts. Thank you for taking part in any of the several fundraisers for my family.  Thank you for dinners.  Thank you for hugs.  Thank you for notes and letters and messages.  Thank you for still being my friend & family member even though it takes me 6 months to thank people for the nice things they've done for us.  I'm honored to have so many people with me on my adventures.

Photo courtesy of Ben Richey, Roswell Park

Photo courtesy of Ben Richey, Roswell Park

 

4 down. 2 to go!

1st Timer

I'm picky about people.  In order for me to be comfortable with any situation, I need to click with the person or people I'm with. I know it seems like such a simple thing but my comfort level with people is a huge deal.

This rang true even for today's adventure.  I got my first official tattoo.  I have to say official because technically they tattooed me during radiation....but it doesn't look cool....and it wasn't fun.

Joe Folmar works at 6th Order Tattoo on Genesee Street in Cheektowaga.  He came highly recommended!  I met Joe last summer. I had stalked his work online and needed to meet him to make sure he was good peeps.  I just couldn't imagine sitting with someone for hours and trusting them with this task if I wasn't comfortable with them.  I liked him right away!  I gave him all my pictures and we chatted about my future tattoo.  Minutes later I was on the books....for 6 months later.  Looks like I wasn't the only fan of Joe!

At the time of our consult, I was planning this tattoo as a survivor.  Little did we know I'd be showing up 6 months later as a baldy in the middle of chemo treatments.

I think my excitement beat out my nervousness today.  I just couldn't wait to see the finished product!  Joe was great from the moment we walked in.  I say "we" because I'm never alone on these adventures!  I was joined by my friend Ashley and my Roswell paparazzi, Ben.  Joe's understanding of what I wanted was spot on. And he asked me a ton of questions to make sure he was creating it exactly how I wanted.

We figured out the perfect placement and away we went.  The next few hours we chatted about family and life and listened to some good tunes.

And in the end.....

I have a tattoo I LOVE and it couldn't be more meaningful if I tried.  I'm so pleased.  Another checkmark on the bucket list.  But my friends don't lie - I've always heard once you get one it's hard to stop.  I'm already ready for more!

Check out Joe's work on Instagram: @josephfolmar

Boy Band to Mr. Clean

So I'm bald now.  There's that.  It's weird.  It's cold.  But it also makes for a quicker shower and I get to wear fun hats - that wasn't always an option with a giant mop of curls on my head.

December has flown right by.  I dropped the cancer bomb on everyone and then I got so caught up in the magic of Christmas that I didn't have time to update!  That's not a complaint.  Christmas was great.  Super great.  Watching my kids was like watching Ralphie and his brother Randy open their gifts on Christmas morning...."Wow" "Whoopie"....Toby didn't get a red ryder bb gun, but he got a Nerf gun which might have won Christmas.

Since we last chatted, I flew to NYC for a second opinion, I've started chemo at Roswell, I chopped all my hair off and donated it, what hair I had left then started to fall out, and then I had it shaved off.  Oh, and in there was work, shopping, wrapping, parties, welcoming a new member into the family (I'm an aunt again, yay!!)...it's been a busy month.

I think I'll save the chemo talk for another time and skip straight to hair talk.  It's more fun and it's impacted my life in the past month way more than the chemo has.

I started the month with my usual full head of curls.  Knowing I was going to lose those locks soon, I upped my selfie game to get some last shots. Why not?  I thought about doing a tour of Buffalo with my hair in different locations around the city....but that's weird.  Who would do that?  I'm not normal.  Luckily, there's an incredibly talented photographer at Roswell by the name of Ben Richey who has challenged himself with documenting my cancer journey through the lens of his camera.  How cool is that? Not only can I update everyone here, but now you'll be able to see the good, the bad, and the ugly parts of this shitty adventure.  You can check out his work on Instragram: @benricheycreative.

I met Ben on my first day of chemo.  The Buffalo Sabres were in the building visiting patients for Christmas.  Super cool.  They came by my chair and took some pics and signed some autographs.  My first day of chemo didn't suck.  Later that day, Ben returned and we had our first photoshoot....while I was being pumped full of chemo drugs.  Me, my curls, my red chucks, and my chemo pump.  Living the dream.

My chemo nurse had warned me that because my "cocktail" was going to be so strong, I would most likely lose my hair before I made it to my second treatment.  So just a week after my first treatment, I beat the chemo and chopped my hair off before it was gone on its own. I've always wanted to donate my hair.  I was actually planning on participating in the Bald for Bucks program through Roswell in March.  Even though I didn't make it to March, I was still able to donate through Roswell and I donated over a foot of hair!  My friend Tamera, who cuts my hair regularly, was able to meet me that Wednesday morning and, in a studio in Roswell, she cut off my curls while Ben and his partner Tony filmed and took pictures.  It was a pretty special day.  Here I was losing my hair because I had cancer, but it was one of my happiest days.  Tamera and I grew up down the street from each other.  She and her sister and I used to play hide and seek in my front yard and I would swim in their pool in the summer.  And here she was playing this important role in my journey.  My husband, the captain of my support team was there to stand by me as I lost such a strong piece of my identity.  My friend Ashley was also there.  Ashley and I have been friends since before we even started kindergarten.  She had one of the most important roles - she made sure the Christmas music was playing, she danced in the background, and she kept a smile on my face the whole time.  What a day.

Since I still had a week or two before it started to fall out, I took advantage and had Tamera do a fun short haircut.  I have NEVER had hair that short.  This was an adventure in itself.  It took me a day or so to get used to it, but once I got over the fact that I could double for the Biebs, I actually really liked it.  I was told I looked like a brunette Pink.  I'll take that!

Fast forward to Christmas.  My hair was falling out pretty heavily but I thought it would make Christmas less awkward if I kept my rockstar hair versus being a Christmas baldy.  Then 2 days later it was time.  I couldn't take it anymore, I was making a mess.  There was hair everywhere...time to shave.  Again, Tamera to the rescue!  This time I met her at her at work - Corto's Salon in Hamburg. My friends Anne & Emily were by my side - and my new personal paparazzi.  Tamera buzzed all my hair off.  I didn't think I'd get emotional, since I didn't the first time she cut it but seeing her buzz it off got to me.  There were tears.  Once she was done, I still had some "fuzz" - but it was splotchy fuzz since some had fallen out.  We needed one more step - the razor.  Into the barber seat I went for a clean shave!  I was treated like a queen every step of the way.  It was a little emotional, but like before, I was surrounded by people who made it special.  And after we were done, we went hat shopping!

So in the matter of about 3 weeks, I went from long curly locks to Justin Bieber look alike to Mrs. Clean.  I think I can rock this.  I mean I have no choice, so I HAVE to rock this.  And if nothing else, there's hats!

Day 1 of chemo. December 8, 2016

Photo courtesy of Ben Richey, Roswell Park

Hair donation day. December 14, 2016

Photo courtesy of Ben Richey, Roswell Park

The day I became a rock star!

Bald Day. December 27, 2016

Photo courtesy of Anne McIntosh

Photo courtesy of Anne McIntosh

Magic

My kids and I were in the car a couple weeks ago and we were pointing out Christmas decorations.  If you've met me, you know I LOVE Christmas and I get so excited that I just can't hide it.  If you've met my kids, you know they can't pass a Christmas tree or Christmas light without declaring it loudly.  This was the perfect time to happily turn on some festive tunes.  Toby, my son, asked me from the backseat, "Mommy, why do you love Christmas so much?".  First panic set in because my full answer would've taken the entire car ride home to explain and his attention span is only about 4 seconds.  So I decided on, "Because it's magical".  His response?  "There's no magic, Mommy.  Santa just puts all the toys on his sled and delivers them to the kids!".

Seriously.

Stop it.

I teared up and my heart smiled it's biggest smile.  Magical.

I had no idea how to start this blog post, so I chose my favorite recent kid story.  How I really wanted to start it was....I have cancer again.  (Seemed a bit harsh. It's the holidays.) For those of you keeping track, Santa has now given me the wrong gift 2 years in a row.  It's true.  It's back.  It's not in the same place, but it's in the same general area.  I won't go into detail because it involves the word vagina and that makes people uncomfortable.  There are typically 3 ways that cancer is fought: surgery, radiation, and chemo.  Unfortunately due to the location of the new tumor, surgery is not an option.  Radiation is not an option either, as you can't radiate the same area twice.  That leaves chemo.  My oncologist set me up to start chemo today.  One 8-hour round of a three drug cocktail every 21 days for 6 cycles.  The thing about the chemo is there's only a 20% chance it'll work.  20%.  Not great.

There's something I don't think I've shared on this little blog yet.  Which is surprising because I share pretty much everything.  The type of cancer I have is called Glassy Cell.  Why does that matter? With a quick google search, you'll see that Glassy Cell is no good.  The kind of cancer you don't want.  Not that you want any.  It's exceptionally rare and extremely aggressive.  Of all cervical cancer patients, less than 1% have this type.  It is also one of the types of cervical cancer not caused by HPV.  Yes, it's possible to get cervical cancer without having HPV.  Little known fact.  You're welcome.

I've know I've had Glassy Cell since day 1 which means I've known it was a possibility it was going to return at some point after I beat it.  Thanksgiving would've been my 6 month cancer free anniversary.  I expected it to wait a bit longer.

So in a turn of events, yesterday I was given an opportunity to go for a second opinion and I've decided to take it.  I did not start treatment today and have put it on hold so I can travel to Sloan-Kettering to see what they have to say.  I was nervous that my doctor wouldn't want me to delay treatment for a week because what we're looking at it is so serious. But I've been given the green light and I am incredibly grateful for this opportunity.

How did we get to this point?

After my last battle, I was set up on a 3-month plan.  Every 3 months I would get a check up at Roswell.  (I'm much better at making these appointments than I am at the oil change ones)  My last check up was in October.  They found something. At the time, in the office, it was hard to tell exactly what they found.  Could just be bad tissue from the radiation.  Could be cancer.  Could be nothing.  They did a quick biopsy there and that came back clear.  The doc sent me for a scan juuuuust in case.  Good thing.  You light up in scans when you have cancer.  I was lit.  Still, we needed to be sure.  This could be a false positive.  They sent me into the operating room and took "lots" of biopsies.  Now as I'm writing this I'm realizing I never asked how many they took and I'm curious.  These showed cancer.  That made it official.

Lots of emotions.  I haven't really cried a lot.  It's weird.  I'm an emotional person usually, but this doesn't do it for me.  I'm just annoyed.  Like stop it.  I want to live my happy little life without worrying if this is my last Christmas.  This also makes me feel super awkward.  I hate telling people that my cancer is back.  Unfortunately for most, I'm fairly blunt in my delivery of this news and people don't handle that very well.  Sorry.  I'm a realist, not a dreamer.  No puppies and rainbows here. I know what I'm up against.  This made telling family and friends way harder than the first time.  Most people I told found out via text.  And a lot of my friends are finding out right now.  Modern technology kind of made me an asshole and I apologize.  But it also is giving me this outlet and opportunity to share my story.  And that's amazing.  

Thank you, All.  Thank you for being with me on my adventures over the last year.  My support system is the best on the planet and I appreciate every single bit of support you've shared with my family and I.

Round 2.  

Ready.

Cancer? What cancer?

You know what my favorite one-liner is? I'm X months cancer free. Seriously, it has not gotten old. 

A couple weeks ago I applied and was picked to be part of a Leadership program at work.  The company chose 2 or 3 people at each of its locations and shipped us all to Ohio to spend a week in the woods at a leadership camp. This entire process was outside my comfort zone from the beginning.  But as cliche as it sounds, cancer reminds you that life is short, so I might as well go on as many adventures as I can. To apply, you had to make a 2 minute video of yourself explaining why you wanted to be a Leadership Champion.  You know how many takes it took me? About 27. That's not an exaggeration. It got to the point where I filled the memory on my phone and couldn't record anymore.  Then with the video you had to submit a paragraph also explaining why you wanted to be Leadership Champion. I'm fine writing a blog. My real life writing skills? Not the greatest.

So here I am, in the middle of the woods, with 60 people I don't know - except for Hannah, my co-champion from Buffalo. Not nerve-wracking at all. We did an ice breaker to give everyone a chance to introduce themselves. We tossed this ball around that had lots of questions on it.  When you caught it, you had to answer the question under your thumb.  Mine was: What makes you happiest? So many things. But I decided to share THE thing. The Saturday following camp was going to mark my four month anniversary of being cancer free. Later on I was able to share with my little group the story of my red shoes.  Of course I had worn them on my first day at camp - it was a new adventure! 

Throughout the week we learned how to facilitate leadership seminars, did group activities, and on the last day we did a high ropes course - I looked forward to this part all week. On the ropes course I was paired up with a man named Greg.  He's a morning show host at a radio station out in Tucson. We made a great match - we were both up for trying anything. After we had our training and were suited up and strapped in, we made our way up to the top. We crossed some swinging steps and made our way to the zip line. I was so stinking excited. But as we stood there waiting for our turn I kind of lost it. I got super emotional and I couldn't even control it. How embarrassing. This poor guy was stuck with the crying girl. I wasn't scared though. It definitely wasn't fear. It was like everything in that moment was perfect. Here I was about to be 4 months cancer free and I got to fly.  Fly through the air as free as a bird.  And I was so grateful to have a partner who enjoyed the moment with me.  Definitely a moment I won't ever forget.

So to officially celebrate being cancer free, I decided - at a moment of insanity - that I should run a half marathon on my anniversary. 12 hours after landing in Buffalo after a week in the woods, I was standing at the start line of the Mighty Niagara Half Marathon.  I can't even tell you how many excuses I gave myself to not run this race.  I was exhausted. I hadn't trained well enough.  I had been down and out from fighting off shingles just a few weeks prior. SHINGLES! (I thought only old people get shingles.)  I needed to do this. I needed to prove to myself that I could do it. I wasn't dead. Just a little beat up.

My first half mile was like the scene of a movie. I got a bit emotional. I mean, I was running a freaking half marathon...after kicking cancer's ass. Then just ahead of me I saw a woman running wearing a pink breast cancer cape. How cool is that? She's like a cancer superhero! So I'm already emotional and then I see her and THEN "Seize the Day" from Newsies comes on my playlist...
"Now is the time to seize the day
Stare down the odds and seize the day"
Seriously, it was like I was set up or something.  (Yes, I'm ignoring the fact that your making fun of my music selection. It's my favorite musical, ok?) I catch up to the superhero and we run the first few miles together.  Here I was so proud because I was doing this race post cancer and she tells me she's currently being treated for breast cancer.  Her name is Janice and she's amazing.  Just amazing. 

Here is where the embarrassing part happened.  It's me. There's an embarrassing part to all my adventures. Turns out the digestion issues don't go away after you finish treatment.  Now they're not nearly as bad as they were during treatment, but I'm definitely not 100%. You know when a really bad time to have to "go" is?  When you're about 7 miles in to a 13 mile race and the next potty stop isn't for another 1.5 miles.  If you've never done this race or you don't live on the race route, you probably didn't know that some people tailgate in their front yards to watch and cheer the runners.  Its pretty great.  So I asked a tailgater if I could use their bathroom. And they said yes! These poor people let me into their beautiful Victorian home.....to poop. They're my heroes. 

After that, I finished the second half of the race and finished strong with a time of just over 3 hours.  For you non-running people, that's REALLY slow.  But this was the one race I didn't care about beating any records. I just needed to finish. I'm so thankful for my husband and sister who were there cheering me on throughout the race, offering to pick me up when they found out I was in a stranger's house, and letting me cry on their shoulders after I crossed the finish line.  I'm a survivor, guys.  I did it.

And the people who let me poo at their house? I wrote down their name and address and the next week I sent them a pack of toilet paper and an air freshener.