The “Why’s” Behind Why I Workout As Much As I Do

Top left to bottom right is in order of the last three days – coincidentally the number of fingers held up had to do with the ride it was in a row. NOT PLANNED. I’m SOAKED in each of these pics as well. DYING!

 

I really don’t post much about my workout routine – or why I do so. Sure, if you follow me on Instagram you see from time to time that I’m at the yoga studio (STL peeps, I go to Blue Bird) OR lately that Brittany and I worked out when I was in Georgetown, OR that I went hiking not once BUT twice this past summer.  Some think I’m crazy, some wonder how I keep up the pace and others get it for various reasons.  So here are the what’s, why’s and how’s – you may have to put your eyeballs back in your sockets and pick your jaw up off the ground – not many know how much I actually workout.

Why: Simple, because I can.  Because I choose me, which means being the best me I possibly can.  Pre-ovarian cancer I worked out – walked, light weights, when I wanted.  Then I got so darn tired that I slacked off, and right before my diagnosis I changed up my workout routine to see if I could compensate for the “tired” – I just didn’t know the OVCA was the reason for the tired.

Sure, I could sit on my bootie and still get away with it in most people’s opinions, but that’s not an option.  Everyone, cancer or not, should try and be in the best possible condition they can be, on the off chance some health related issue should arise.  The shape you are in plays a KEY role in how you fair in this entire process – by all means, ask your doctor, they’ll tell you the same thing.  Mine would love for you to give her a microphone so she can tell you why she does it and why you should be too!

Yes, I’ve been plagued by this stupid (I have other words, trust me) thing called cancer.  Yes, I could say “well, it happened and I was fairly healthy…clearly that didn’t work”, throw my hands up in the air and give up.  And yes, I could get away with every excuse in the book I wanted to use as to why I slack off now, but I don’t.  Let’s be honest here – I’ve been diagnosed with two forms of cancer I don’t fit the criteria for, NOT EVER CLOSE…who’s to say one of them won’t come back or that somewhere down the line another one pops up – I’m a realist, I know this is all a possibility, I’m very open and honest about it when asked.  There’s always a chance, just like there’s a chance for any of you reading this.  So why in the world wouldn’t I want to be in the best “fighting” shape possible?!?  Why wouldn’t you, the person reading this with a perfectly healthy body, waste your perfectly “good body” when there are others who wished they still had that as an option?!?  Highly aware that was a VERY bold statement – it was meant to be.  I’m still a work in progress, but I’ve come a LONG way with a few LITTLE things that I need to kick to the curb…it’s not easy, but it’s the choice I make.  I do this for ME…because I CAN and others aren’t as fortunate to be able to do so.

This was today – I PR’ed for 4th time in the last 6 rides and got a “Hat Trick”! These stupid little things keep me pushing myself!

How much do you workout?  What are your go-to’s?:  30-120 minutes, 5 days a week. Yes, you read that correctly. Thirty minutes to two hours, five days a week is what I shoot for.  The degree of time difference depends on the work week, schedule with the children, etc.  When the kids are with their dad, it is an automatic 2 hour workout day – today is a 2 hour day, although as I sit here and type this I keep telling myself it’s really okay if I skip the cardio portion today – ha!  Then the other part says “well, you have this, this and this you need to do this week, so get it in today”.

My go-to’s are simple things, anyone can do.  Yoga (shoot for a minimum of 3 classes a week, average about 4), my BeachBody on Demand (people, it’s Netflix for workouts – anyone can do these, there’s TONS of options and a good chunk of them are 25-30 minutes! Email me with questions), walking (5 miles when I do, but it’s cold and I hate walking in the cold), and spinning (got  a Peloton so I can ride at home – this thing is life changing for me!).  Now, do I think you need to do all of these things, ABSOLUTELY NOT!  I have medical reasons below as to why this is what works for me, it’s the right combination for me, which may not be for you.

Start small, and easy, and work your way up. Cardio is HARD for me…I’m basically dying every time I do it, gasping for breath some days – thank you chemo!

Okay, I get it, you want to be in shape, but WHY IN THE WORLD ARE YOU DOING THIS??  As I said before, because I can…but the truth is, it’s actually working for one medical issue I have due to all of the lymph nodes I had removed.  After the latest one was clipped in August the pooling of lymphatic fluid in my pelvic/groin region hasn’t really stopped and it’s painful/uncomfortable when too much collects.

Someone asked me in a message not too long ago how my “lymphatic fluid issue, or whatever it was” was doing, was it still a problem? Yes, unfortunately for me, it’s still a problem.  Everyone varies when it comes to this stuff.  For me, my body hasn’t quite figured out how to regulate getting the stuff where it needs to go, so I have to help it out.  Fingers crossed it will become more manageable and not quite as big of a pain, but it will probably never go all the way away.  So how do I manage it outside of the leg pumps I use?  Through exercises.

I took to Google when I couldn’t figure out what in the world to do – I was doing everything I’d been told to do, why wasn’t this working?!?  I found a few things and decided to put forth the effort needed to actually see if this would work for a month, and sure enough, it did.  Yoga is excellent when it comes to getting things in your body moving in general – inversions and twisting moves are specifically key for lymphedema. After two weeks of going 3-4 times a week, there was a HUGE difference, enough that when I slacked off to see if it wasn’t coincidental, the pooling picked up a bit again.  The Beachbody workouts I do is for strength and muscle tone, but they all kick my butt!  And I’ve found out that spinning gets things moving as much or more than the yoga – I read that walking was good, and the more vigorous the better.  The same goes for spinning, so I try to do HIIT routines.  Another recommendation was jumping on a trampoline – one I haven’t tried yet, but may use as an excuse to purchase one for the kids! LOL!

Here’s the deal – these are things I do for ME….my life kinda depends on it.  Just like some of you, who have family health issues, try and stay ahead of them by working out and watching what you eat.  I now need to do the same, even though mine isn’t hereditary…for some reason, my body has been compromised and I need to stay ahead of the game, when I can.  (I think mine is environmental and something I ingested due to growing up in a rural farming community.  For the record, this can’t be proven, it’s purely speculation)

All of us can do something though – big or small – to be the best us we can possibly be.  Don’t waste your good body because you were too tired today, didn’t have enough time or whatever other excuse you may have.  I’m a part-time single mom, with a full-time job, running a household by myself, and I’m tired…but I still find the time to do this for ME…and let’s be honest, my children as well.  Start with baby steps.  Yes, it will hurt, but it will become easier and get better.  You’ll feel better, trust me!  Do it to stay ahead of health issues!  Do it for those of us are who fall into the category of no longer having a healthy body – BTW, when asked how I would rank how healthy I am on a scale of 1-5, I still ask if that includes having had a cancer diagnosis…which takes me from saying I’m a 4, to saying “well, I guess that means I’m a 1 or 2”, although I always tell them if we didn’t have to include the whole cancer thing, I’m definitely a 4.  Dead silence and stares people. I laugh, they do not – ha!

(Send me an email with any questions about the things mentioned – happy to help point you in the right direction – kickovariancancer@gmail.com)

ONE MORE THING!!!  THIS WAS NOT MY ROUTINE DURING CHEMO!!!  Chemo kicked my butt – some days my goal was to talk a walk down the hallway or to the bathroom and I was winning – the first 5-7 days after I was trying my best to just get food down.   Each day I’d try to walk a little further…EVERYONE IS DIFFERENT.  I still get zapped, have to modify and just poop out, but I keep going through the workout.  Like I said, do what works for YOU, not what works for ME.  Each person is different 🙂

Operation St. Louis to Austin – SUCCESS!!

Wait – you got on a plane, traveled to Texas hang with two women you’ve never met before for two days?!? Is this something you do often?!? Have you lost your mind?!? Did their husbands think this was crazy?!? Answers in order: Sure did! Heck no! Absolutely not, one was in on it! Ask me if I was nervous…yes, I was. I had no idea if Rees would think I’d lost my mind when I originally asked, and Mandi was worried she’d have to pretend she liked me – 2 glasses of wine later and she confessed we were good, she liked me – lol!

Lunch with Blane and Mandi – Loved having time with the two of them before Brittany and Rees landed. On “back to the Lou” day, I spent the morning with Rees and Brittany – we all got our together and separate time, it was really nice!

These two get me – I don’t have to explain, I don’t have to preface everything with “if this is too much, just let me know”…they don’t know exactly the thoughts going through my head, but they know. Each of our experiences are different, yet similar. As soon as I knew Brittany was starting chemo again (boo!!! Suck it cancer!!) I reached out to Rees almost immediately to see if I could come visit – after I got the green light, I reached out to Mandi – “about that meet up we’ve been talking about…how’s December 9th work for ya?!?” When one of us needs the other, we all three come together.

Now, I’m sure you’re thinking “sounds like a blast, talking about cancer all weekend”…ummm, I think you forgot…cancer doesn’t define us. We laughed, got outdoors for the day, ate tacos and cookies for breakfast, and yes…we talked about cancer related things. But, in between, we forgot for a little bit. And I only almost cried twice…not one time did a tear actually roll down my face though, I held it back.

Mandi is my 9 years out, “lone survivor” (see here), and Brittany is my “fight for your life” rock – each of us means something different, but the one thing that’s the same?? Each of us represents hope to the other. Each of us “booty pats” the other and says “go get ‘em, kick butt”. I guess you could say we’re the best kinda girl gang – the kind choosing joy over and over, the kind LIVING life, the kind hopefully helping others learn the ropes along the way. The kind who would move mountains (which we all three LOVE!) to make sure the other was okay.

The whole crew!

It’s like this – we’re a pizza eating, wine drinking, working our butts off kinda girls…who happen to have one thing in common, freaking ovarian cancer (big thumbs down!). Something we can’t change, and oddly enough, something that brought us together – to be honest, had we never had this stupid disease, we’d still have meshed perfectly!

Rees’s “fart cake”!

And let’s talk about Rees and Blane for a second – these two men make me believe there are still good ones out there.  Rees let me crash his birthday weekend because he knew this was exactly what his wife needed – he puts her first, no matter what!  And Blane, he came into Mandi’s world AFTER ovarian cancer – Blane, you make me believe this stupid diagnosis won’t always scare people away — you’ve got some major kahunas B-Lane (IMG_0356 – Click here for Blane at his finest!)!!  These two may have gotten sick of hearing about cancer stuff from time to time throughout the weekend, but they hung with us, ran for us (Brittany and I had to walk the 5K) and made sure we were well fed and laughing out butts off!!

Was this a one time thing?? Heck no! We’re in the process of trying to determine when and where the next meet up is, knowing worst case we’ll see each other in Arizona in February…anything longer than that is waaay too long!

What would we say to each and every person, cancer survivor or not??? FIND your people, choose them wisely, LIVE your life NOW, STOP waiting, GET UP OFF YOUR BUTT and MOVE, do NOT take your healthy body for granted, you never know when you might possibly need it in the best condition possible to fight ! But please, don’t forget to be silly, make memories, laugh until your cheeks hurt…find the silver lining in life, it’s there!

 

I Did Something Tonight for the First Time Since the Night I Ended Up in the E.R.

Y’all, I did something tonight I hadn’t done since I wound up in the E.R. last year – 2 weeks before I’d find out I had ovarian cancer.  Only difference, the date.

Tonight was Jaxson’s Jingle Bell Ball for school – last year we had an unexpected ice storm and it had to be post-poned until January.  Every time the email would come across with the headline “Jingle Bell Ball”, I wanted to puke, because the last time I went to his school holiday performance I found myself in the E.R.  It was all I could think about – those words equated to Missouri Baptist Emergency Room and the entire night played out all over again.

Wanna know what’s really strange, without even thinking about what I was doing, I made dinner reservations at the same restaurant we went to last year. Why’d you do that?!?  Because it’s one of my favorite restaurants and I didn’t want to go to the one we’d gone to last week.  TODAY was when it hit me that that was where I’d gone last year before his show – I almost cancelled.  This year we pulled in the parking lot and my mom says “I’m going to take that spot.”  I quickly said “don’t park in that spot, its the same spot we parked in last year.  I ended up in the ER last year.  You don’t realize this, but we ate at the same restaurant we ate at before his performance last year.  Please don’t park in that spot, I can’t do it.”  I sat in the last row, in the center of the room, last year I sat near the front, on the left side of the room.

I don’t have a picture from last year, which is probably best.  I could barely sit through the performance I was in so much pain.  They kids couldn’t sit on my lap.  My jeans were making things worse, and all I could think about  was, there’s no way I’m going to make it until I go to the doctor in the morning, this medication should have kicked in by now, I feel like I’m in labor – they thought I had a U.T.I.   That’s when I got the text message from a friend, who’s my Nurse Practitioner.  It basically said that if I didn’t go to the ER that night and came to the office the next morning, they’d send me to the hospital.

I don’t really remember much about that night at the performance, I kept trying to drown out the pain I was in, but it was all I could focus on.

Wanna know what I saw tonight – EVERYTHING!  Jax-man KILLED it out there! He sang his song, knew EVERY SINGLE WORD and action motion.  He NAILED his part in their bedtime stories, didn’t skip a beat!  He DANCED his pants off for their hip hop routine, AND HE SAW ME; there, in the building, smiling and cheering on from the back!  AND in turn, he SMILED and WAVED, and looked at me to make sure I saw EVERY SINGLE THING!  BTW, I’m pretty sure he thinks I’ve lost my mind sometimes…I cheer him on (quietly!) by doing silly little dances, waving my hands around, giving him HUGE thumbs ups and anything else, so he (and Olivia, when it’s her day!) know how well they’re doing.  Let’s be honest, if they fell flat on their face, I’d do the same thing – LOL!

This, this is the first of many things I’ll be doing again.  Several dates/events are quickly approaching, all of which now have new meanings, with January 19th just around the corner.  But guess what, I DID it!  I went, I sat down at the same restaurant, and I ate this time.  Last year I maybe had two bites of my burger and a couple of fries before I said I was full or couldn’t eat, or acknowledged that the pain I was in was causing me to feel like crap.  This year, I ate my vegetarian style dishes – I’m not a vegetarian, but I try to limit my meat intake, especially when fantastic vegetarian/vegan options are available – and I didn’t feel sick, I enjoyed it!

If you’re like me and a year full of firsts is quickly approaching, do your best to do the things you think you can’t…or the things you don’t want to.  Why?  Because you’re still here – not doing difficult, hard things, means cancer wins….and NONE of us want cancer to steal our joy.  Now, I’m not going to try and hide the fact that there are a few things I won’t do, or I’m doing things in place of them to cause diversions, or take negatives and try and turn them into a positive.  There are some things I’m going to have to do, that I don’t want to do…that I’ll probably cry through, and that’s okay too.  Smile when you can, laugh when possible, and yes, you’re allowed to cry when some of it just sucks and is too hard to deal with, but you still have to do it.

If you don’t follow me on Instagram, you may want to start tomorrow…I’ve got a HUGE SURPRISE up my sleeve and it’s going to take ALL DAY for it to play out!  It’s going to be THE BEST thing EVER and I’m so excited I can hardly stand it!  (handle is @kickovariancancer)

Hockey Fights Cancer – What a Difference a Year Makes

As many of you saw on my social media accounts, Friday was the St. Louis Blues Hockey Fights Cancer game night, an initiative the entire NHL league takes part in during the month of November (our game was on December 1st).  Last year I participated in the campaign in a completely different capacity – work related, fulfilling a sponsorship UMB participated in, in conjunction with all events leading up to the game.  My family was there and my work friends volunteered, selling raffle tickets for warm up jerseys to raise funds.

Hockey Fights Cancer 2016…Jaxson was NOT into having his picture taken last year – ha!

Last year my Grandpa was battling stage IV lung cancer – he was a smoker back in the day.  One of my friends’ mothers was facing the same battle, for the same reasons (Jacque Malone).  A family friend’s son/grandson was battling Leukemia (Isaac, diagnosed at 21 months). For those wondering, “My Dad” on my Dad’s sign is for his father who passed away from stage IV lung cancer – mesothelioma.  Neither of my grandfather’s cancer were hereditary, my mother’s father smoked, my dad’s father built homes when it was okay to use asbestos.

The photo of the five of us is VERY difficult for me to look at for a number of reasons – we are nowhere close to the same family in this photo.  Out of all the names listed, only one of them hasn’t lost their battle to cancer – Isaac (he’s still receiving treatments, but fingers crossed, 2019 will be his “cured” year).  And not one, but two of us have been diagnosed with cancer this year – I had no idea ovarian cancer was growing inside of me at a rapid pace, but should have known something wasn’t right.  The photos from here until diagnosis make it quite clear I was sick, I just didn’t know it – I get angry with myself for letting things go because I thought outside factors were causing the issues.

Carrie and Kim – Sister and one of my closest friends!

This year, this year we went to the game as a group of friends and family in support of the initiative – raising funds and bringing awareness to all things cancer.  This year, my name, my father’s name, my dad’s office manager’s name and soooo many other names filled our cards, that I ran out of room on mine – if you’re not on the card, it means nothing other than I ran out of room and encompassed all the ovarian cancer fighters as one.

This year I went from being an observer of all the cancer survivors in the arena, to being one of the survivors standing to be recognized.  The bartenders and people around me made comments of “I noticed your card says ‘me’, you look really great” or “Does your card say ‘me’?!?!”  Yep, sure does.  Sometimes they high-fived me, other times their eyes said more than their words, especially when I said “I had ovarian cancer, but there’s no evidence of disease at this point in time…my last treatment was in June, hence my short hair.”  (p.s. my hair has reached the stage where it’s a little too long for a mohawk and it’s getting a little unruly).

This year, for the week leading up to the game, I raised funds for ovarian cancer specifically, instead of selling raffle tickets at the game to raise funds for various cancer initiatives.  By the way, my social media followers ROCK, we raised a little under $2800 in 4 days, surpassing my goal of $2500 for the Ovarian Cancer Research Fund Alliance.

I wanted to post all of this yesterday, but I needed a day to collect my thoughts and become okay with a bit of this.  Most days I’m totally fine being a cheerleader for ovarian cancer.  Most days I’m okay with being a face, raising awareness as a cancer survivor.  But this time, I needed to know that I was okay with putting all of this out there, looking at the photos, because so much has changed in a year.

Every single person with me on Friday night was there as more than just a friend – these are the people we consider family, these are SOME of the people who’ve been there throughout the year helping us out first with me, then with my dad.  These are my mom’s, my extra dad’s, my sister and my dearest friend that I couldn’t thank enough for all the time she puts in to help me out, even when I tell her I don’t need help and I’m fine.  But one person is missing, right???  My dad…he was sick.  He’s doing okay, but this round made him a bit more tired, so you didn’t see him out with us last weekend and this past week, when his immune system was down, he got the flu.  He’s okay and was totally bummed he was unable to join us.

A lot of things can change in a year, and I could have stayed at home and not gone, but that means cancer “won” as my friend Brittany likes to remind me – she gets all of this all too well.  Sooo, keep doing the things you would have in the past, the first time for everything is a little hard, but it gets easier!

 

Wanna Talk About Hats – Let’s Do It!! Giving Tuesday

 

It’s been awhile since I’ve made mention of the Black Clover teal ribbon hats I was/am selling to raise funds for ovarian cancer research, education and care packages. Let’s just say September wore me out – holy moly! With Giving Tuesday two days away, I thought this would be a good time to answer the questions I receive most around this topic, while doing a little plug for the day!

What’s the story behind the hats: I knew I was going to lose my hair from the treatments I’d be receiving and I wanted to be prepared – this meant a wig and hats were going to be needed. With teal being the color for ovarian cancer, I Googled teal hats and came across Black Clover’s “mint” (I lovingly refer to it as my signature pastel teal hat) hat. As I wore it from treatment to treatment, and my close friends and family started wearing them in support, Black Clover picked it up on Instagram. On World Ovarian Cancer Day in May, a package arrived on my doorstep with ribbons stitched on the side with a little note from Black Clover…needless to say, it made my day and a lightbulb went off in my head when other ovarian cancer survivors asked me how they could get one.
What makes them unique, for someone with a bald head, is the performance fabric…it’s so soft, not scratchy and is super comfy! Their logo “Live Lucky” is one that many of us live by every day in the cancer world – also very fitting!

How’d you come up with your goal number: Since I was diagnosed in 2017, I went off the number of anticipated women who are expected to be diagnosed this year, and in addition to that number, wanted to honor the women anticipated to lose their battle this year – 22,440 and 14,080, respectively. Raising a whopping $438,000 from sale proceeds.

Where does the money go: Good question! The funds raised currently go to organizations who provide care packages to ovarian cancer survivors, those who work with research hospitals to try and find/create an accurate preventative screening test in order to catch the disease in its early stages, when it’s most effectively treated, and those which educate survivors, communities and other organizations about ovarian cancer. The organizations are located in the Midwest (where I’m from), East Coast (upper and lower), Western half of the US and down south (think Texas area).

Where do the funds to purchase the hats come from: I use my own money to purchase the hats at this point in time – I’m finally to the point where I’m able to use some of the proceeds in order to keep things rolling. Initially though, it was through my credit cards and other means personally. I do receive the hats on a wholesale discount from Black Clover, which helps out immensely.

Who helps you get these out the door: I have a couple friends that will help from time to time when they’re in St. Louis visiting me, but more times than not, it’s just me. I’ve become very good friends with the postal workers at my local post office! I’ve taken a bit of time off because it’s quite exhausting.

So are you only doing this for 2017, what if you don’t reach your goal: Nope, not just for 2017…I will continue sales as supplemental fundraising efforts to two large events I’m in the process of planning for 2018. Since I am one of the women in the numbers for 2017, the total sold won’t fluctuate. Fingers crossed will surpass this goal in the next year or so. $438,000 is A LOT OF MONEY for ovarian cancer research and education.

With Giving Tuesday literally around the corner, my hope is that you will share this post with as many people as possible in order to sell a TON of hats, maybe even sell out of the supply I currently have in my dining room — oh my word, you should see the mess! There are a ton of wonderful not-for-profits out there who need support and funds, my hope is you’ll choose ovarian cancer this year. My hope is that one day people’s eyes won’t pop out of their heads when they hear me tell them I’m an ovarian cancer survivor, or the lady who found out I had cancer and asked if I walked in the Komen Race this year, didn’t assume because I had cancer at this young of an age, that it was breast. My hope is that one day I don’t have to watch another young woman get a Stage 3 diagnosis, one that many women face. There have been HUGE strides made with other types of cancer when it comes to preventive screening measures and treatments, unfortunately ovarian cancer isn’t there yet – it’s time to make some noise in order to get this “silent killer” there.

So, who needs hats for presents this holiday season – they will not disappoint! But you have to remember, when asked “why the teal ribbon” you can’t just tell them because some chick had ovarian cancer and she was having a fundraiser. It needs to be followed with, not sure if you know the signs or symptoms, they’re not really talked about, and you list them out or send them to any number of sites that will.  And if hats aren’t your thing, there’s a page you can donate on as well – click here! 

Happy Holiday!

Little Bit of Old with a Little Bit of New

I know, I know, where have I been – let’s say my universe has kept me on my toes lately and I just haven’t had the time or energy to put things together like I normally try to. I’ve been focusing on what needs to get done and haven’t had a lot of extra “me” to do anything beyond those things.

With quite a significant increase in followers over the past 9 months, I thought I’d take the time to do a recap on how I got to this place, along with a few updates. Here’s what I like to call “a little old mixed with a little new” – for those of you highly aware of my story, hang tight!

Diagnosis: On January 19, 2017 I received the call you think you’re prepared for, but no one ever actually is. “Honey, I’m sorry to have to tell you this, but you have Ovarian Cancer…it’s not good, it’s aggressive and we need to get you to an oncologist quickly.” They emailed me all of the pathology reports, I started doing research with the information I had in hand (DO NOT DO THIS — THE STATS ARE GRAVE WITHOUT ALL OF THE NECESSARY INFORMATION) – I was 36 years old with High-Grade Serous Adenocarcinoma Ovarian Cancer. All I knew at the time is that this is NOT good.

Fast forward a few weeks and I’d have all the information I needed – Stage 1C, we’d caught it early, which rarely happens. They also found a focused group of endometrial cancer as well during the debulking procedure, not something they were anticipating.

What did your debulking procedure entail: Mine was fairly simple in the world of ovarian cancer – in the real world, it was no-joke. I’ve had a full hysterectomy, including cervix. I did not have any additional masses in the scans done prior to this surgery (my second in 2.5 weeks, the first removed the cantaloupe sized mass I had in/on my right ovary), so I was fortunate in that regard. However, they still needed to check everything, this includes going through every inch of my bowel by hand to examine it, removing my omemtum (since it “filters” everything before entering the bowel, ovarian cancer usually goes her first, after the obvious places) and inspecting everything in the abdominal/stomach area. Once all of that was done I was nicely closed up (and when I say “nicely”, it’s a work of art how well my doctor stitched me back together – IMPRESSIVE!) !

Where is your team of doctors: I’m fortunate enough to live in St. Louis and we have one a top notch research and treatment hospital locally – Siteman Cancer Center – Center for Advance Medicine. My doctor is Dr. Andrea Hagemann – I love her! I can’t say enough good things about her and the team that have been with me along the way — she’s real, she gets me, she REALLY, LEGIT, hugs me EVERY TIME! She’s probably reading this too – you rock, doc!

This photo is 10 days after my first round of chemo – 1 hour before I shaved my head. My hair almost completely fell out in the next 1-2 days after

What was your treatment plan: It was determined I would need 6 rounds of aggressive chemo treatment including carbo-platinum and taxol. I had a horrific reaction to taxol on my first day. Putting it mildly, chemo sucks! I wish I could say something positive about this experience, but there really isn’t anything positive, EXCEPT: it’s your way of fighting to live, and you form relationships with those caring for you, as well as those receiving treatment at the same time.

I did not have radiation – I get asked this a lot, but I didn’t.

How often do you see your doctor: I’m supposed to see her every 3 months, unfortunately I’ve not quite been able to get to that point, but I’m making headway (keep your fingers crossed I’m not back there before January!). Next question would probably be, what do those appointments entail – blood work to check CA-125 levels, a thorough pelvic exam (because I’m so thin they can feel just about everything…a blessing and a curse), and every 6 months I’ll have a CT scan (my last one was in October). I’ll maintain this schedule for the first 1-2 years and then extend a little bit until I get to my 5th year. And I have to have an ultrasound on two different things every 6 months – the way it’s timed out on finding these things that are monitored, I have an ultrasound every 3 months, just on different things (see below).

What’s your current status: As far as ovarian cancer goes, I’m N.E.D. at the moment, and plan on staying that way! (No Evidence of Disease)
Now, because I’m not like you and have a CT scan more often than I’d like, I find out about all things in my body, and sometimes that means extra testing. Currently I am monitoring 3 nodules on my thyroid, and a 6mm polyp on my gallbladder (this showed up on my scan in October). All of those things are of size that they aren’t too concerned, but are of size that they need to be monitored for changes. These things freak me out, not going to lie. Why? I’ve had 2 cancers without any genetic reason as to why, so what’s to say I won’t have another. I hate that these things keep popping up.

Do you take estrogen or any other medications: Yes, I take estrogen. It’s not for hot flashes though – it’s to try and combat other long term health issues associated with being thrown into menopause at age 36. I was hesitant on doing so, but there are studies that have shown if you’re able to take it, the survival rate is longer for those that do. Not all ovarian cancer patients/survivors are able to do so.

No, I’m not currently, although I take about 12 supplements a day to try and combat a few issues I’m having with nerve pain. I was taking gabapentin, but quit cold turkey when I felt like I was in too much of a fog – I couldn’t function, I hated it. It did work though. DO NOT COLD TURKEY IT – I got sick from doing so.

“Teal Tuesday” at Jaxson’s school for ovarian cancer awareness month

How are you: I’m good! I’m just like all of you, I have my ups and downs, and want to punch a hole in the wall from time to time (c’mon, admit it, you get that feeling too! LOL), but I really can’t complain. Life seems to always present a much worse scenario when I need a good swift kick in the pants to “stop it!”, and I dust myself off and get back to it.

I’ll admit, I’m tired…beyond words, tired, but I think that’s to be expected. Mentally I am trying to determine how to put one foot in front of the other and move forward, beyond all of this. I’ll get there, I don’t think I’ve actually given myself the time needed to process what’s happened…it’s been a lot and I haven’t wanted to deal with it just yet. I need to remind myself that it’s okay to not always be okay…at this point in time, I haven’t let myself be okay with wanting to fall apart.

I’m human y’all…people always say “I don’t know how you do this, you’re always smiling…”  First of all, I’m not always smiling, second of all, everyone needs to grant themselves a bit of grace during times like this.  You’re allowed to be angry, you’re allowed to fall down and cry…you just can’t allow yourself to stay there, that’s when cancer “wins”.  Positive thoughts outweigh all of the negative.  Good days far surpass the bad days…are there are a multitude of bad days.

One of my favorites of the three of us during treatment – it’s the day before Mother’s Day.

Are you married: No, I am not. I’m a divorced, part-time single mom of two children – Olivia (soon to be 8) and Jaxson (4). I get a TON of help from my parents, I couldn’t do it without them. My close friends help out from time to time as well. (lots of questions on this!)

Do you work: Sure do! Back full-time now – lord, I’m dying and try to sleep a lot to compensate for the level of exhaustion I’m having.

What’s up with your hat sales: I’ve sold a couple thousand and clearly have a long way to go — I’ll have an update on Sunday with new information. All in all, not too shabby! I’ll be announcing donation amounts, which will be going out to the organizations the end of the month, soon as well! (if you want to purchase, click here)

What’s next for Kick Ovarian Cancer: Look for some format changes in 2018 for the organization as a whole – I’ll continue to blog and share stories, but I’m looking to add in a health and wellness element, along with a more defined course of action for the organization as a whole. Two main events on tap that I hope to make our “signature events”. And I’m tossing around the idea of a “live life now” concept…still mulling that one around.

All-in-all, things are good.  Life is getting back to normal, although this new found life is a challenge.  I get frustrated trying to figure everything out…a bit of trial and error.

Happy Thanksgiving to all — enjoy spending time with friends and family — find at least one thing you have to be grateful for this year, everyone has at least one!

November is Caregiver Month — Meet My Mom

 

Oh, you didn’t realize November was Caregiver month for us people who need a little extra help – not just cancer patients??!!   I didn’t either, don’t beat yourself up too much – LOL!

I talk a lot about various people, but I don’t think I’ve ever talked about my Mom…my main caregiver.  (Yes, that’s right, I don’t have a spouse/significant other – I’m working on a “this is me” update since I have quite a few new followers that will touch on all of this) Unfortunately my mother has been the main caregiver for three of us, battling cancer, over the last 12 months – her father, lost his battle to lung cancer in March, me, and as of September, my dad.  This IS WAY more caregiving than anyone should have to do in a lifetime, let alone a 12 month period.

Starting in January, my mother basically moved in with us until I was done with treatment – several friends stepped in to help out on the weekends so she could go home, but the majority of the responsibility was on her.  She was the one helping me get out of bed when I could barely lift my head, watching me go through treatment and the side effects that would ensue, driving me to my million and one appointments AND helping me with the children – she didn’t just have me to try and take care of, she also had to help me when it came to making sure all of the children’s needs were met.  I was always with them, but needed an extra hand, or two.

I’m really not sure how one person deals with all of this without having a complete breakdown – sometimes I worry that she hasn’t allowed herself to process anything that’s transpired, merely because there hasn’t been much time.  I worry that she doesn’t take care of herself because she’s always putting everyone else that needs assistance first – THIS is a HUGE issue and CONCERN for most caretakers.  They have higher levels of depression, stress and frustration (gee, I wonder why?!), lower levels of self-care and an increased risk of heart disease.  Thankfully, my Dad is doing really well with the side effects from his treatments, so it’s not the round the clock care – take this pill to stop this, drink this to make this go away, call the nurses and tell them we need to come in for fluids, research on the internet for what MIGHT make things a little better (BTW, Google is NOT your friend, don’t use it unless you really know what you’re looking for — and I mean PRECISELY what you’re looking for).

She stepped in when we needed her the most, and continues to do so – I’m sure there were a lot of sleepless nights, days of exhaustion  and wondering how this was all going to pan out.  I’m sure there are still times like this.  What we’re all finding out is even when the treatment stops, things don’t magically go back to the way they were…my life isn’t the same as what it once was and we still need help.  I wish for her sake, things would even out a little so she would have the time to take care of herself, instead of having to continually schedule things around everyone else’s schedule — I’m hopeful that once things become a little more routine and a schedule is in place she’ll be able to do so and things will go back to the way they once were.

What do I hope for her and most caretakers?  That they’re talking to someone about the experiences they’re having, that they’re not bottling them up and trying to plow through.  Their experiences, feelings and emotions are just as important as those of us needing the extra help — it’s okay for them to be emotional about this whole thing.  Hopefully she expresses to her friends and my dad when I’ve had a bad day and taken things out on her.  Hopefully she understands that having to have her come in and help isn’t and wasn’t easy.  Hopefully she understands that I have feelings/opinions, just as she has feeling/opinions — they’re not the same and that’s okay, but we each have to be allowed to express them.  For all of you reading this that are caretakers, and/or have been caretakers, know that even though we don’t say it enough, we worry about you, we worry that you won’t be able to maintain this ridiculously unfair pace, that you’ll forget to take care of yourself and that you’re not utilizing services available to you.  And we worry that when things are supposed to go back to “normal” you have just as difficult of a time adjusting as we do.

So Mom, thank you for everything that you’ve done over the last 10 months – holy crap, it’s almost been a year since this whole fiasco started!  Thank you for stepping in when I needed someone to take care of me.  Thank you for being there for Olivia and Jaxson when they needed you just as much as I did.  But, please take time for yourself.  Please remember that you are important as well.  Please do the things that are important to you, the things that you want to do.  It’s okay to have your own life, to take care of yourself and to be selfish too – this goes for all of you caregivers out there!  Although we don’t say it, we worry about you probably as much as you worry about us.

For more information and resources for caregivers  please visit – http://www.caregiving.org/resources/general-caregiving/

 

My Mental Game Has Headed South…

Another word that starts with an “s” that would describe the state of my mental game is that it flat out sucks lately!  And, as many of you know, your mental state plays a key role in how you not only handle treatment, but how you handle “life after” as well.  Some days I’m totally fine and other days it is struggle bus city, as I told my doctor a few weeks ago.  I think there are a couple reasons why and there are a few things I’m doing to try and combat it…let’s be honest, admitting that it’s gone down the pooper is step #1. LOL!

So why struggle bus city as of late?

The time of year – the end of October last year was when things started to seem to roll down hill…for my family in general.  It’s when I should have known something was wrong, but I didn’t.  It’s the holidays and lots of photos and events and “how are you doing”, “you look great”, “do you feel better, because you look better”.  It’s a lot of smiles and “thank you’s” and “I’m good”, it’s overwhelming, it’s exhausting.

Looking back at now versus then brings a lot of tears.  It’s Christmas card season and this is one thing I’m not looking forward to…like I said earlier last week, all of us have changed and I’m not quite okay with my exterior change. I think some of it has to do with the fact that I’m sometimes still angry, and quite frankly…I still wonder why.


Stupid stuff keeps popping up on scans – 
yes, you read that correctly.  I had another scan that I haven’t made mention of.  I was having some pains, and of course, when anything seems off the only real way to tell what’s going on is twofold – blood draw and CT scan.  I got a text late one evening from Dr. Hagemann that read “Everything looks pretty normal on the left side, how are you feeling?”  I answered it by saying something like “that’s great, but I’m still in a bit of pain.  What does the right side look like?” By the way she’d made mention of the left, I knew something popped up on the right – of course “very annoyingly they see something on your gallbladder that needs to be further evaluated.”  Are you kidding me?!?  One time, one time can we NOT find something on a scan.  It’s a 6mm polyp on my gallbladder that needs to be monitored every 6 months by an ultrasound.

The guy sitting next to me on the plane may have the same thing.  The lady enjoying a glass of wine may have something similar on her thyroid, like I do.  Both of these two probably have no clue — why?  Because they’re not having regular scans done.  Although Dr. Hagemann assured me this is all okay and more than likely will turn into nothing…it all needs to be added to the list of things we monitor.  It’s annoying to say the least — it freaks me out, it causes me alarm while waiting for the further testing results to come back.  It’s just NOT NORMAL….so I’m annoyed.  As silly as it sounds, I kinda crave being the person that isn’t in the know about every little thing that may be different, but okay, on the inside of their body.  So, I’m in a funk, and to be honest, catch myself waiting for the next thing to pop up — for one of these findings that are probably nothing, to actually be something.

So, what have I been doing to try and combat all this mess going on in-between my ears??  A few things – I’ve been busy and I’ve been quiet.

Yoga – LOTS OF YOGA – as in 4-5 hours a week (I’d like to maintain 3-4 on a regular schedule, 5 is pushing it).  I find that I don’t think about anything but my practice while in class, which is great.  I also find that my mind and body are in a better, more relaxed state, after leaving class.  It gives me time to myself, time to clean all the garbage out of my head, time to refocus my efforts on things that need my attention.

30 Minute HIT Workouts – If I’m angry and peeved, I just push myself harder.  Some days I don’t want to do this at all, but I find that when I do I feel great.  I use something as simple as BeachBody OnDemand videos (currently doing 21 Day Fix and think I’m going to die from time to time) – I can do it at the house and it only takes 30 minutes to complete.  I feel like a new person once knocking these out – I take 1 day off a week, but tend to walk 5 miles on that day.

Nixed the Gabapentin – Although this was working wonders on my pain management from neuropathy, I started to feel like I was a zombie.  The high dose of vitamin D wasn’t cutting it and I needed some relief.  That relief came at the cost of me feeling like I was in a fog and completely exhausted.  I tried playing around with it a bit to see if I backed off the dosage a bit if it would still be as effective, unfortunately that didn’t work.  Sooo, in me fashion, I said “f-it” and quit, cold turkey at the beginning of last week.  THIS IS NOT RECOMMENDED!!!  I wasn’t thinking when I made this decision, it’s a neurological drug…BAD MOVE!  I’m okay though, just felt sick for several days. And although the pain is creeping back in, I’m trying natural fixes to combat, I think it will be better for my mental state.

 

Although I’m in a funk, I’m trying to give myself a little grace…I’m sure all of this is normal and things most cancer survivors go through.  Someone asked me if I thought group therapy might be a good idea to try.  I said yes, but I’m not there yet and when I am, I’ll be more than willing to go.  More on why I’m not there yet in another post.

Once I can get a few things off of my plate and really determine a schedule that works for me, I’ll be in a much better place to tackle the mental game.  Right now, I know what I’m doing are band-aids for a temporary fix…right now, it’s all that I have time for, BUT I’m working on reprioritizing things in order to make this a priority!

 

It’s Halloween – Last Year vs This Year

Happy Halloween!  We have been on a trunk-o-treating and dressing up binder and tonight is the ACTUAL night they’re supposed to do such things – 2 trunk-o-treats, 1 wear your costume to dance class and goodies for 2 classroom parties = one tired mommy!  BUT, they love it, every last second of it!

There are a lot of things I’m not really looking forward to as the holidays approach – Halloween was the first of it.  Let me restate this a little bit – it’s not that I’m not looking forward to the festivities and such, it’s that I’m not looking forward to all of the photos and things of that nature. I miss the girl from last year…well, I probably only miss a few things about that girl. Some days I don’t even recognize myself in photos and some days it’s hard, because I’m reminded of what happened.

What’s the biggest thing I miss?  Easy, my hair.  Yes, my silly, stupid hair.  What’s the next thing?  Simple, my life before cancer.  Let me rephrase this…not having to worry, the continual trips to the doctor, scans, physical or occupational therapy.  These are all things I will adjust to, they are my new normal…but I’m just not there yet.  Some days I still cry, more than I think I should, because I miss not having to worry and I miss the things I lost once cancer entered my (our) life.

BUT, when I look at these two photos and compare, there are a couple key things I notice — some may be obvious and some not so much:

We’ve all changed:  Yes, each one of us has changed.  Olivia and Jaxson are both older, taller, and have slightly different costumes – Jaxson insisted on being Batman again.  “Mom! I want to be the Batman with muscles and a belt this year.”  Okay, buddy, I think I can manage this. Olivia looks so much older.  My hair is completely different.  These are the things that are obvious, these are the things everyone notices right away.

What are the things that aren’t quite as obvious??  Well, first of all, I rocked those bats on top of my head, with Batman themed stickers all over my face, like it was a “normal” outfit.  The girl in the Wonder Woman outfit, she wasn’t very comfortable…she was very self-conscious that people might be looking at her and saying things.  AFTER you go through all that is cancer, you no longer care — my backbone is SIGNIFICANTLY stronger.  Last year I thought I had time to figure things out…this year, I realize that there really isn’t a “good time” or a “right way” and that life changes at the drop of a hat, when you least expect it.   I want to have fun, doing the things I want to, when I want to — there isn’t a “right time”.

We’re all still smiling!  Yep, our smiles are just as big, if not bigger than they were last year!  Why?  Because we have managed to get through this thing called “life with cancer” and “life after cancer”.  The three of us have our moments.  We each get bent out of shape and sideways and emotional from time to time, but we figure it out and we get through it.  It may be school, it may be work and it may be stupid appointments and tests…regardless of what we get all catywhompus about, we’ve learned how to figure it out (or, maybe I have and I coach them through it).

Time and time again people tell me they don’t know how I’m so positive about things.  They’ll even make comments about how good I look – I laugh about this one, I think people expect cancer survivors to all look frail and sick.  The majority of my ovarian cancer survivor friends look very similar.  We’re healthier, making better life choices than we did before, and let’s be honest…dodging a bullet a time or two makes you appreciate what you have and you tend to let the little things go that would have created unnecessary stress in the past — p.s. in case you didn’t know, stress causes cancer to grow…like wildfire!

All-in-all, I think I like this year’s picture the best out of the two — why?  Because I was able to spend Halloween with these two, doing WAY more Halloweeny stuff than I’d expected, but they LOVED every last minute of it!  Because the girl that is me in this year’s photo might not look exactly like I’d like for her to, but she’s changed so much for the better that I’ll take her hands down every time.  She’s surprised the heck out of the girl in the picture from 2016…sometimes I wonder where she came from!

Happy Halloween to all — have fun, be safe and enjoy!  My little bits are with their dad tonight, so look for pics of them in different costumes when they come trick-o-treating tonight!

 

 

 

Round #3 – He’s No Longer Lighting Up Like a Christmas Tree!!!

I know, I know, I know..I’m really far behind on posting and updating…you name it, I’m behind in doing it!  Many of you have asked how my Dad’s doing or how his last treatment went, so here we go!

Treatment #3 — the one we knew would follow the PET scan results we’d received that morning.  What would these look like?  Would things have changed?  Would the cancer have shrunk enough for everyone to feel good about it working?  Would he need a stem cell transplant?  These are all questions we had…things were pointing in the direction of improvement, but you just never know.

We received excellent news — he’s no longer lighting up like a Christmas tree! He’s considered CR (complete remission)…there wasn’t one lymph node that lit up on the scan, not one!  Why do I mention this?  Because there was SO MUCH lymphoma, that he lost 11 pounds after the first treatment from the cancer shrinking alone.  They told us this would be the case and what they would hope for, but 11 pounds of cancer??? Crazy, right?!?

Although he’s considered to be CR, he still needs to undergo the remaining treatments…3 more after this past week.  Why?  It’s simple — to ensure he stays in remission.  It’s the same reason why myself or many other cancer patients go through chemo after the cancer is removed surgically — to ensure all of the  potential microscopic remnants of the disease are gone.  IF he stays on schedule, he’ll complete his last treatment on December 26th, the day after Christmas.

Many of you asked this past Friday, when I was home, how he was doing, where he was, etc.  He was tired…he wasn’t feeling the greatest, so he was at home.  He tends to forget that he’s not invincible and can’t just keep going — remind you of anyone else???  Now you know where I get it from!  So, not feeling the greatest was a bit self-inflicted and a bit aftermath of chemo.  Speaking of chemo…he’s tolerating treatments VERY well overall, not too many side effects, but I keep reminding him he’s only on #3, so don’t get too excited.  We’re all really pleased with how well he’s tolerating everything.

How are the kids handling everything is another question I get asked — really well, they haven’t seen much changed in Dad.  He still plays with them, those of you who follow me on Instagram saw them out playing in the yard last week, running around and such.  He looks really good — although I told him he looked terribly tired when he showed up at my ultrasound appointment a week ago SUPER early in the morning.  To which he laughed and said “thanks, that’s just what I needed to hear”.  Sorry, I don’t hold much back, especially when I was irritated he’d woken up early to be there when I’d prefer he’d just been sleeping.  Moral of all of this…if you didn’t know what was going on, and he had his hat on, you’d probably just think he was tired…he looks really good.  Olivia keeps asking me why he doesn’t have a port and I had to have one — I tell her everyone is different and he didn’t need one, like I did.  (it’s different for each type of cancer, based on treatment and testing needed)

Thanks to everyone for checking in on him — he’s doing great and he’s halfway through this crappy thing, called chemo! 🙂