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.

Buh Bye, Roid!

In case you haven't heard.....I'm cancer free!!!!

5 days ago, on the 5 month anniversary of finding out my hoo hoo had been invaded by an evil monster, I found out the monster had officially been defeated.  Roid is dead.

I went in for my PET scan at 7:45 am and just hours later my doc called to give me the awesome news.

As you read in my last post, this definitely isn't the end of my journey, but it's the part of my journey I've been looking forward to the most.  Captain Obvious.  I know.

I have a lot of people to thank for all the support I've received and that will happen soon, but for now I'd like to send out a blanket Thank You to everyone who follows this blog and who has sent encouraging words.  The support - even from complete strangers - has been incredible.  Thank you. Thank you. Thank you.

I have an idea for those curious minds of yours.  I get asked a lot of questions about my journey.  So my next blog post is going to be a Q & A.  I want you to send me any questions you have about my diagnosis, my treatment, my recovery....anything.  You should know by now that I'm not one to hold back, so you can make the questions as personal as you'd like.  You can comment on this post, post a question on the Red Shoe Adventures Facebook page, send me a private message....whatever floats your boat!

Thank you for all your support! 

Warning: Embarrassing details inside

So here I sit.  I've just been injected with radioactive fluid that will turn me into Spider-Man.  Ok, maybe not, but the metal container it comes in makes me feel like a science experiment. Anywho, I'm lounging for the next hour until the fluid works it's way through my bloodstream.  Then I'll sit in a machine for 45 minutes and the results from that will tell my doctor whether the chemo and radiation treatments worked or not. 

It's PET scan day. 

I asked my doc yesterday to confirm that he'll call me when he gets the results.  I don't see him for another 2 weeks and I can pretty much guarantee I can't wait that long to find out what's going on.  I'm not a worrier, but I'm a tad bit anxious about where I stand in the cancer game.

Life has been kind of getting back to normal.  From talking to family and friends, I've found that everyone thinks I'm back to the same ol Lesley.  I'm not there yet, but I'm working on it!

The weeks following treatment, even though you're not physically receiving treatment, the treatment you had is still working on your body.  I'm told this is why you don't get scanned immediately after treatment ends.  When treatment is over, they pretty much send you on your way and you recover....and wait.

You know what prescription the doctors did give me after my treatment was done?  Not drugs....but sex.  Because that's just what I want to jump into after putting my lady parts through all that hell.  Awesome. Sign me up.  You know what happens if I don't "fill my prescription"? My hoo hoo closes.  Yup.  You read that right.  That's a thing.  Seriously.  Nobody wants that. 

I know you're dying for more embarrassing details and frankly that's what I'm here for....to embarrass myself.  At the last meeting with my radiation crew they gave me a gift.  The gift being a dialator.  It was like a sex toy party with every ounce of fun sucked out of it.  Like your parent giving you the sex talk and you just want to sit there with your fingers in your ears saying "lalalalala".  Yeah. Thanks.  I'll just stick that in my purse and be on my way. 

I know it sounds like it should be fun.  And, really, who doesn't want to be prescribed that?  But simply said, without going into details, it's not fun for me.  At all.  This part of the cancer game is going to be a long road.

In other news....

Turns out I have quite a bit of scar tissue that's wreaking havoc on my lower back.  I'm still trying to figure this part out.  I knew when I was done with treatment that my muscles around my lower back and abdomen (the radiation sites) just felt different.  I still can't explain it.  It feels really tight, but not just overuse/sore muscle tight.  Just different.  I started out seeing a physical therapist.  She gave me many, many stretches to do and those have been helping, but just a little. The first time she touched my lower back, she immediately told me how bad it was and said I could benefit from massage (who couldn't?). 

My next step was seeing a personal trainer.  I lost about 25 lbs during my 7 weeks of treatment.  Pretty sure it was all muscle.  I wanted to start working out again but I was a little afraid as my body felt so much different.  It was important to me that I found someone that has experience with cancer patients - that knows that my body is different.  I found her and she's kicking my butt and it's fabulous.  But we're still having issues with getting my back feeling good.  She too has said that she can feel the tightness in my back.  Unfortunately it's my way lower back that's pretty darn hard to stretch.

Sooooo my next call went to a massage therapist.  I'm still researching my options here.  When I asked my insurance company about massage therapy, they said it's not covered so....yeah.  That's next on my list of things to do.

So while from the outside it looks like I'm totally back to normal, I'm not quite there yet.  I didn't finish treatment and boom, life is perfect again.  I'll get there though.  For now, I need to just think of more embarrassing stories for you.

Oh!  Like the one where I had radiation burns so bad on my bum that they were open sores.  At one point they told me to make sure I keep the cream on it or my butt cheeks will stick together and heal that way.  While that was pretty terrifying at the time, it's a great story to hold on to and tell the grandkids someday.  And it goes over great in a bar when you're out drinking with your friends.

Speaking of drinking....we haven't really celebrated the completion of treatment yet.  I'm due for a party.  Hopefully the results from this scan will warrant a celebration as well.  And hey my birthday is coming so I'm not lacking reasons to have some fun. 

Fingers crossed for good results.  Here we go!

Out of hiding

I know, I know I kind of went into hiding there for a while, huh? To tell you the truth I went quiet for a few weeks to spare you from my crankiness. I was pretty darn miserable and I was afraid I'd only write mean things. To sum up the last few weeks of treatment: cancer f*cking sucks. And not so much the cancer, but the side effects of the treatment you're suffering through. Did you know that radiation burns you? Like leaves marks, burns you? Like need to use creams in places only babies should need creams, burns you? Reason #284 why Lesley will never be a bikini model. Throughout all this miserableness no matter what advice anyone gave me, nothing was helping. I just had to wait it out. So I did. And here I am. Burned parts and all.

The good news is I'm using less toilet paper these days....if you get my drift. The doc said to slowly introduce foods back in my diet to see what I can tolerate. I took that as go eat everything you've been craving for the last 2 months but couldn't eat (I might not be great at following directions). I just look at it as celebratory gluttony.

Because of my increased visits to the potty, I've lost a considerable amount of weight. Listen, I've been walking the fine line between being obese and overweight most my life, so normally losing 25 lbs in a matter of weeks would be cause for celebration. Losing 25 lbs from having stupid cancer mess with your insides? Not cause for celebration. This may be why when people see me now and say "You've lost so much weight! You look great!", I cringe. I know it's a gut reaction (pun not intended, but I'm keeping it) to say this to overweight people who have lost weight....I know, I've said it before too. But don't say it to normally overweight people who lost weight because they've been through 7 weeks of hell.  I'd rather be fat. Take this as a public service announcement. Please.

So what's the plan for the future, you ask? (You didn't ask, but I wasn't sure how to segway from fat talk to....anything else). It's been about 2.5 weeks since my last treatment. I meet with my oncologist in about a week and as long as everything looks as it should, I'll go for a scan in a few months and cross my fingers that Roid hasn't returned. As for the immediate future, I'll be returning to work soon. I miss interacting with adults. Being a stay at home mom while trying to rest and recover was not an easy gig. I think my kids are ready to get rid of me.

I haven't explained much to my kids about what's going on. My 5 year old just knows that mommy went to the doctor everyday and that something is wrong with her belly. Even though they didn't know, they helped me celebrate on my last day of treatment - along with my husband, my parents, my partner in crime - Aunt Jean, and 2 of my amazing friends. There is a bell in the lobby of Roswell for patients to ring on their last day of treatment. On the first day of my journey at Roswell, I took a picture of this bell. I took it so I could have it with me as something to work towards - someday I'd ring that sucker. But then in the beginning of my journey, part of me wanted to skip the bell because I thought it would be mean to other patients who had a longer journey than I did - those who wanted to ring, but couldn't. But as I progressed and met other patients, I saw how supportive of one another we were. And as I neared the end of my treatment, at my most miserable point, all I could think about was that damn bell. I would ring it for me and for my pals I waited in the radiation waiting room with - day after day. I would ring it for all the amazing staff that helped me every day. I'd ring it for my supportive family and friends. Being able to walk out of the radiation department and ring it in front of my family and friends and have everyone in the lobby cheer as I did it - Best. Feeling. Ever.

I wish I could end this lengthy post with "and that's how I beat cancer"....but I didn't...yet. I survived treatment, that's what I did. I'm so happy it's over for now. I'm not sure why I got this rare form of cervical cancer....but I did. Did it make me stronger? I'm not sure. It definitely taught me a lot. I know/have known way too many people with cancer. I can safely safe that until you go through this yourself, you just have no idea. I had no idea. 

Zap!

Forgive me for not posting last week?  Happy Belated Valentine's Day!  We didn't go out for a big dinner but I bought new underwear!  Ha!  We'll just pretend it was a normal Valentine's Day.  The woman that checked me out at the store even gave me a sneaky look and wished me a Happy Valentine's Day when I was buying them.  Sorry, lady, while I'd like to say I bought them for the holiday of love, in reality, I have to drop my pants for a group of strangers on a daily basis and something needed to be done. Romantic, eh?

Ever wonder what radiation treatment is like for a cervical cancer patient?  I walk in, drop my pants, lay on a table, and a giant machine rotates around me and zaps in just the right places.  The picture below is of my actual treatment room.  They gave me 3 tattoos around my belly (my first ink!) before I started treatment so they know where to line me up.  Then they make sure I'm in the right position using lasers and machines in the room. I have a wonderful crew that sets me up each day and gets to hit the magic buttons.  They're kind of my personal batch of super heroes.  They get to shoot the bad guy every day!  They're after you, Roid!

So this is the eve of week 5.  4 weeks complete!  Yahoo!  Yippee!  According to the current plan, tomorrow will be my last chemo treatment and I'll finish up with about 3 more weeks of radiation.  While it sounds downhill, we start a new adventure next week.  These past 4 weeks I've been receiving external radiation.  Starting next week, 1 to 2 times a week, I'll be receiving internal radiation - also known as brachytherapy.  Unlike my current quick and easy daily morning zaps, these treatments will take hours and involve me getting anesthesia - like the epidurals I had with the kiddos.  It's called internal radiation....so they're going in!  Ugh.  I'm not thrilled.  I'll let you know how it goes!

Also, in case you're keeping tabs...still not keeping any food in.  I'm looking forward to being done with treatment and being able to eat.  This is ridiculous.