Genetic testing isn't fun but I guess breast cancer isn't either

I was 25 years old before I ever went to a gynecologist.   I had a kidney condition as a kid and had a traumatic experience at the urologist.   It involved stirrups.  In the car on the ride home, I told my mother I wasn't taking my clothes off at the urologist again without a knock down drag out fist fight.   Then I told her if I lost the fist fight, the next time I just wouldn't agree to get out of the car and go into the doctor's office ever again.   That's how my brain works.  Solving the problem so it won't happen again.  Also, slightly militant.

After my mother had ovarian cancer, pretty much everyone I knew wanted me to know that sort of thing can run in families.   My regular doctor looked sort of confused I hadn't been.  And then my father even called me to discuss the importance of pap smears.  Gag me.   I decided to find a gynecologist just so I never had to discuss pap smears with him again.

This is the face of a woman who does not like discussing pap smears with her father.

It's also worth mentioning my mother's mother had uterine cancer right around the same time.   44 year old me wishes 23 year old me had paid better attention.   44 year old me now gets asked about it and feels like an idiot every time she doesn't have the details.

After my mother was diagnosed with breast cancer, doctors were literally pausing when we got to that part of my medical history.  They started having follow up questions asking how old she was when she got each one.  The gynecologist looked very serious during the conversation.  Once I had my last baby, I got to start mammograms. Twice a year.  I alternate a regular mammogram with an MRI every 6 months.  

And then they started talking about genetic testing.    And then one day the internet showed me an add for Color.com.   And then one day about a year after my mother died, I was swabbing my cheek and mailing it off.   And then a nice lady on the other end of the phone told me I have the BRCA1 genetic mutation. 

I didn't immediately do anything.   I guess I just sat with the information.    I mean I shed some tears and did a lot of googling.  Then I didn't do much for like a year and half.  But #selfcare2019 means putting on your big girl panties and doing what grown adults are supposed to do.  You don't have to like the big girl panties.  Maybe you're even scared of the big girl panties.   But you do it it anyway.

It started with my annual gynecologist appointment and giving the doctor my Color.com results.  She told having my ovaries and Fallopian tubes was recommended by age 40 for people with that genetic mutation.  I'm 44 so she she made a point of telling me several times that I was actually overdue and should have it right away.   She also recommended I see a genetic counselor to discuss my results in detail along with enrolling me in the breast cancer early prevention program in my area.

The genetic counselor was the most sobering medical appointment I've ever been to.   For 30 minutes, they essentially tell you they really, really, really recommend you have your ovaries and Fallopian tubes removed.   They tell you how high your chances are of getting ovarian cancer and how hard it is to detect.   They tell you about breast cancer and how high your chances are of getting it and how your chances of getting it will only go up the older you get.   They show you lots of lovely graphs and charts and you get a giant stack of super depressing handouts to take home with you.  My husband is made of twisted steel and told me he almost cried while the lady was talking to us.   It was a downer. 

Next up was the early prevention program.   You get a breast exam and more of the graph and chart talk.   Then a mammogram with the doctor reviewing the results right there and if they need any different angles you step back in and take them right then.  It's all very efficient.   

This is the face of a woman who had to be stuck 3 different times to try to get an IV into her apparently tiny veins.  She didn't cry but she did say a lot of bad words inside her head. 

And then you are back to your surgeon and they pick a date and then there you are looking at the ceiling while they put in your IV and then you're waking up in a room that looks exactly like the room your mother woke up in and you sat next to her bed feeding her ice chips until they moved her to recovery.  And then life feels like it's really coming full circle.  And then you die a little inside thinking about your two daughters taking their turn someday and you take a steadying breath and remind yourself you're going through this so you can be there to feed them ice chips.

One of my girls blowing bubbles in her Easter dress and Peppa Pig rain boots.  Also a good reason to suck it up, buttercup.   

The ovaries and Fallopian tubes are done.  It sucked.  Three incisions.  The left side hurt the most because that's apparently the side they took the ovaries out of.   I sleep on my stomach so I slept crappy for about 2 weeks.   Too bad there's no fast forward button in life so you can skip the feeling sore period.

I'm also going to need that same fast forward button for the the other surgery.   You know.  The big one.  The one I'm dreading.  The one they say I don't have to have but that I know is in my future because that's how my brain works.  Solving problems so the same thing doesn't happen again.

At least the first surgery is done. 

The best and worst of times

One month before my mother found the lump, I found out I was pregnant with my 3rd child.   My mother had cancer 2 other times before in her life.  Neither time was fun.  I'm here to tell you it's even less fun when you're pregnant.    And if it's less fun when you're pregnant, it's exponentially less fun the more pregnant you get and the more hormones you have raging through your body.

Being pregnant at 40 didn't help.  I'm sure there are lots of women who rock pregnancy at 40, I'm not one of them.  I didn't rock pregnancy when I wasn't 40 and I'm here to report I rocked it even less at 40.

My last day being pregnant.  

I was quickly the size of a house.   Some of that was definitely Taco Bell drive through related.   But

some of it was also because I carried extra amniotic fluid throughout.  That led to trouble breathing when I laid down from 26 weeks on.   Just when you thought sleeping while pregnant was hard, try feeling like you're not getting enough air.   I don't care how much Tylenol PM you took, the panic you start to feel when you can't breathe really throws off your mojo.  I started binge watching Law & Order reruns late into the night.   I watched so many I actually had to set my DVR to "record all" so enough recorded all day to last until I was ready to fall asleep.  That's a lot of episodes.   

Worst photo from the worst angle of me looking as big as I felt.   Super tempting to delete but also a motivating "before" photo.  

I was also the size of a house because I was carrying the worlds biggest baby.  She was 10 pounds when she was born.  And she was born at 39 weeks!  Unfortunately, the doctor was guesstimating more like 9 pounds so she didn't schedule me for a c-section.   Shoot me now.   She's lucky she's cute.

1 day old.  

But in the meantime, I was visiting oncologists and surgeons with my mother.  On the bright side, everyone at the hospital is really, really nice to you when you are six month's pregnant with the world's largest baby and pushing your mother in a wheelchair.  On the downside, it's hard to lift a folded up wheelchair into the trunk of a 4 door sedan when you are the size of a house.   I had a little lift and bump maneuver with my hip that worked for awhile.  And when it worked less well, my husband only asked once about the scrape on the bumper and we didn't discuss it again.

Meeting grandma

At 7 months, I finally had to arrange for someone else to drive her to radiation because it was physically just too much for me. That's a hard call to make.  But you do it.  And because your mother is kind and sweet and never wants to be a burden, she assures you it's fine and even looks on the bright side that the other person agrees to hit the Krispy Kreme drive thru for a hot now afterward.   But you still feel like a crappy daughter so sometimes you close your office door and cry at your desk at work.

Blue eyes.   My husband and I both have brown eyes.  Who dis?  

A new baby on the way brought my mother a great deal of happiness.  I firmly believe she lived as long as she did after the diagnosis because of the new baby.   I think it lifted her up and carried her during some difficult days.  And I think sometimes I felt lifted up, too.   Three days after having a baby, I drug my tired, swollen and emotional self to the cell phone store and upgraded my mother's crappy 10 year old flip phone to an iPhone 6 Plus so I could text her photos and videos every day.  Money well spent.   

Photos of babies with giant hair bows are good for you.

I was 2 months pregnant when my mother had the biopsy.  5 months pregnant when she had the double mastectomy.  7 months pregnant when they said she needed chemotherapy but that chemo wasn't medically recommended because she'd had chemo two times before.   I was also 7 months pregnant when my mother told me she figured she'd had 69 years and 69 Christmases and that that was pretty good and made her peace with her prognosis.

A 70th Christmas

I gave birth to my third child in the midst of radiation.  My new baby was 6 months old when the cancer returned.   9 months old when I had to pick a hospice company.  And  11 months and 21 days old when I held my mother's hand for the last time.

7 month photos taken in her hospital room. 

My two older kids actually had their first day of school the day before.   I'd taken their pictures in front of the house.   Four hours later the amazingly kind hospice lady called to tell me the end was near and that I should come.    Nothing highlights how the world keeps turning even when your own life is falling apart like showing your mother photos of the first day of school on her deathbed.  Celebrating a first birthday just a couple days after the funeral is pretty surreal, too.

That first day of school photo.  Also the last photo I showed my mother.

Life is complicated.   Rarely convenient.  And sometimes the worst stuff happens at the same time as the great stuff.  The story of my mother's death is intertwined with the arrival of this third child.  She is cute and sweet and arrived when I needed her.  There are days when she is a tyrant who saps my will to live.   But there are also days she restores me.   And that's life.

The cutest dictator on the block.   

January 2019: Self Care Summary

I think there are a lot of ways to take care of yourself.  Especially if you haven't been doing a particularly good job of it.   So I'm sure some of my #selfcare2019 goals probably seem pretty basic.    So basic I feel a little ridiculous admitting them.    I made my peace with ridiculous.   Life had me feeling defeated.   Rebuilding is a process and you rebuild brick by brick.

Goal 1 for January:   Make doctor and dental appointments

Grown ups make long overdue medical and dental appointments for them and their family members.  I'd drug my feet on some.  Others I just never seemed to get around to.   Everyone in my house was overdue for everything.

 I started scheduling one appointment a week to squeeze them in without having to use vacation days at work.   And then I went to them even when my work schedule made it more complicated.   Every appointment I've gone to has led to extra appointment.   I took 2 kids to the dentist and ended up with a follow up appointment and an orthodontist referral.  I went to the gynecologist and got a referral that led to 5 more appointments.    Even my dentist appointment got me 2 follow up appointments.   At the rate I'm going, it will be July before I'm done.  

While at the dentist, the topic of the wall of tartar behind my lower teeth led to a discussion about sonic toothbrushes.   I'm apparently the only loser left in America using a manual toothbrush.  Then we discussed that I might need to start coming to the dentist every  4 months instead of every 6 months to fight the wall o' tartar.   And then I started paying attention.   I'd like to say I had a life epiphany about the importance of listening to trained dental professionals when they give you advice.   But let's be real.

The magical multiplying appointments have me booked up through July.   It was the every 4 months comment that scared me straight.  Straight on Amazon to Prime myself a sonic toothbrush.   

First sonic toothbrush at 44.   I felt like such a mature grown adult.

And then I started using it.   It's sounds like I'm running a chain saw and I thought I was going to vomit when I tried brushing my tongue with it.   But I'll be darned if my teeth don't feel cleaner.   Go figure.   

Two weeks of sonic toothbrush use.  I keep boring people with sonic toothbrush stories and asking if my teeth look whiter.  

Goal 2 for January:  Read a Book.
I'm kind of embarrassed that actually needed to be a goal.   I've always read a lot.   I've always had books on my nightstand.   I've always liked laying in bed reading before going to sleep.   

But part of what I like about reading is the peace and quiet of it.  And peace and quiet was hard.   Because peace and quiet lets you think.   And thinking can be hard.   Sometimes the days are easier to get through when you don't give yourself quiet time to think.   Watching Real Housewives and surfing the net felt easier, maybe even less scary.   It kept the wolves at bay in the dark.   

Little Fires Everywhere was the best of the 3.  Really well written and so good I didn't want to put it down the last 100 pages.

I read literally two books the year after my mother died.  Both of them were about grief.   I read three books  the second year.   None were about grief.   It felt like progress.   But as time went on and I finally began to think about rebuilding, I realized it was going to have to include finding my way back to something that's so inherently part of who I am.   The time felt right so I bought a couple books and committed to reading for a few minutes every night before bed.   I tried the same thing last January.   I got through 2 books by May.   I decided the time wasn't right.   This time it was.   Some days I'm so tired it's only 5 minutes.  Some days the book gets good and it's 45.   I read 3 books in January.   And I started looking forward to that time.  I like to think it's helping me fall asleep faster.  But I know it's helping me feel like myself again.   

Goal 3 for January:  Start Couch to 5K

I'd been wearing my Fitbit for 7 months.   My goal was 10,000 steps a day.   I have a desk job and that helped me find ways to get steps in during the day and be intentional about it.   I started using my breaks at work to get some steps.   Then I started trying to take the stairs more.   When that felt like a habit,  I tried a couple StepBets to help me stick with it and keep me on my toes.     

I'm the idiot taking the stairs now.   Up when it's only 1 or 2 floors.   But mostly down.    But that's saying something when I have 12 floors to go down at the end of the day.   We'll know I've officially gone off the deep end when I start trying to take the stairs up 12 floors in the morning.   

The more steps you take the more steps you have to take to meet the StepBet goals so I started trying to think of something new to try to keep pushing me.   Exercise is good for me.   Making time in my day to get some exercise is good for me.   Good for my body.   But more importantly, good for my mind.

Reminding myself that I've done it before actually didn't help.  In fact, that was more of a downer than anything.   I once ran a marathon.   Seeing how far away that is in my rear view mirror is tough.    Marathon to lazy and fluffy is humbling.   Knowing how long and hard the road is to get back there is overwhelming.  I had to forgive myself for the mistakes I thought I'd made and put it behind me.   It's not about trying to be back where I was.  It's only about moving forward and doing better than yesterday and feeling better than yesterday.  

Tragically slow.   Sigh.   

When I watched the new season of "Orange is the New Black" last year, I liked not skipping the intro so I could hear the theme song.   "Think of all the roads.  Think of all their crossings.   Taking steps is easy.  Standing still is hard.  Remember all their faces.  Remember all their voices.  Everything is different the second time around."  Sometimes I'd cry listening to it.   Sometimes I'd even rewind to listen to it again.   Because I think maybe I stood still for a long time.   I think maybe I thought that was easier.   Easier not to think.  Easier not to try.   

I marked them off as I went.   I also wrote the day in the box because by day three I started getting confused if I'd marked my miles for that day or not.   Didn't want any double counting.  Especially didn't want to miss getting credit for any.  

But taking steps feels better.    I don't know that any of it's actually easy.   But I want to feel better.  For January, my new goal was 100 miles for the month.   Walking or running counted.   I got 104 for the month.   I also completed the first 5 weeks of Couch to 5K.   I'm here to tell you it's just as hard the 2nd time around as it was the first time I did it.   But I did it anyway.   And that felt good.  

#selfcare2019

The first year after my mother’s death was hard.   I knew it would be hard.  But I had no idea just how hard or what the hard would look like.  

Like, I didn’t realize it was possible to sit at a table and eat dinner with your family and just silently cry while continuing to eat.   More than once.   A lot more than once.

So, yeah.  It was much harder than I ever imagined.   Really hard.   Sort of like how the Grand Canyon is really big.  

According to Google and every self help book I read, the first year would be the hardest.   So I kept my expectations for myself low.   I focused on enduring not conquering.   You know, like, get out of bed in the morning.   Sit on the couch with the kids.    Inhale a sleeve of Oreos.   Take enough sleeping pills so can fall right to sleep without laying in the dark thinking after you turn the lights out.

Some days were good.  Some weren’t.      

The 2^nd year I decided it was time to turn the page.   I was feeling stronger and rarely cried in the shower anymore.    But I also found myself sort of directionless.  There’s a freedom in feeling like you're starting the next chapter of your life but it can also be intimidating to think about all the different ways you can write that next chapter.   Like when you go to a restaurant with a 32 page menu and everything sounds good but you’re scared you’ll choose the wrong thing and hate it.   Except it’s your life and it's overwhelming.   And then you decide to go lay in bed and watch Real Housewives and play Toy Blast on your phone.    

I like to think I’m finally starting to right the ship.   I didn’t start dramatically when the 2nd anniversary rolled around or anything like that.   Just one random day in May when I was tired of being tired and decided to try to do better.  And then I did.   One small thing at a time.    I stopped drinking soda.   I got an overdue hair cut.  I started wearing my Fitbit again.  I tried a new shampoo.   

Stupid stuff other people probably do all the time without thinking about.   Stuff it's requiring me some thought to figure out.  

And when the 2^nd anniversary came, I just promised myself I'd stay the course.   And when New Year’s came, I even decided to call it #selfcare2019.    

And as soon as the thought passed through my brain, I knew my mother would be a fan.     She always looked for things she could do or give me to make my day better, easier, prettier or funnier.    Sometimes it was watching the kids for me so I could go wander around Target and buy things I don't need.  Sometimes it was going to the doctor with me so I didn’t have to sit alone in the waiting room.   Sometimes it was running an errand for me.   She once gave me a big gift card for a maid service.   I’d never paid someone to clean my house before. I guess I thought that was for rich people and that it wasn’t anything I could afford.    I can also be kinda cheap.   But she thought I worked hard and never had time for myself and that if someone else cleaned my house that would save me time and she wanted to be able to give me that.   She also knew it was something I’d never do for myself.    For six months I walked into my clean house once a week and every time I’d sort of exhale and smile and the sun would shine brighter that day. 

I remind myself of that when I try to cut a corner on #selfcare2019.   It would be like cutting a corner on her not just myself.   I should honor her memory not cut her corners.  

Me and the world's loudest toothbrush.   Let's not discuss how many times the dentist has recommended one and I blew off the advice of a trained professional.  

My self-care this month as been starting Couch to 5K again.  I also bought myself a sonic toothbrush.   Both are good for me.   Both have had me on the verge of throwing up.  Who knew brushing your tongue with an electric toothbrush is so gag inducing if you’re not careful.        

At any rate, my dentist would be proud.   So would my mother.

Today was that day

My mother died 2 years ago.    She died 9 months after the last radiation treatment.   14 months after the double mastectomy.   21 months after she found the lump.   

She became a single mother when I was 10, worked full time, raised two kids and did the best she could.   As a mother, she was loving and kind and always our biggest fan.   She bought me super girl t-shirts and Wonder Woman knick knacks throughout my life and I know that’s because that’s how she saw me.   Capable of anything. 

She always took an interest in whatever we were interested in.  There can be no other explanation for her interest in fish when my brother got a giant fish tank or the number of times we spent our summer vacation at a professional football training camp even though she had no interest in football.  We went on adventures to the World Figure Skating Championships, romance novel conventions and Graceland.   She was up for anything and just happy to be there with us.  

She was an avid reader, watched The Young and the Restless every day and loved shopping online for things she was convinced I needed.   She thought getting her fingernails painted was a big treat, her favorite ice cream was butter pecan and she loved these stupid Maple Cream Eggs at Easter that they only sold at Walgreens.  She loved chocolate, Orange Crush soda with a bowl of popcorn and a good steak.  She thought Tina Turner was a tough chick, Tom Select was handsome and Joan Rivers was funny.   She was stubborn but sweet.   Frugal but generous.  Feisty but funny.    She weathered many health issues over the course of her life.   Too many to name.  But she survived cancer and chemo two times.   The third time she didn’t.

She was 70 years old when she died.    

She died on a Tuesday.   The service was on Friday and I went back to work on Monday.   She was cremated and her ashes will be buried under a tree someday when I’m ready.  I think she’ll like that.   I  think she’d like the shade it would provide.   She’d like the strong limbs to hold a swing for a kid.   And she’d like for me to have a place to go to sit and talk to her.   Because there are many things about losing her that are difficult but losing my best friend is by far the hardest.   I talked to her every day for as long as I could remember.   And now I don’t.   No one could ever find the mundane details of my life so interesting.   No one’s voice was such a calm and fortifying force on my difficult days.   I’m thankful to have had that for as long as I did.   She was kind and sweet and the world is a little less sweet without her.   Or at least I know my world is.  

She lived with me for almost 10 years before her death.   But even before that, I spent most of my life taking care of her in one way or another.   Sometimes it almost feels like losing a child.  Except with children you had a life before they arrived.    You can remember a life before them even though the memories are distant and fuzzy.     But in this case, there was no before.    There had always been her.   Except now there isn’t.  

It's been a hard two years.   There hasn’t been one day that’s gone by without me thinking of her.  

I stopped writing on my blog right around the time she found the lump.   Looking back I know that wasn’t a coincidence.    All my words were gone.   And I had no courage to try to look for them.   It was enough to just get up in the morning.    

But that can’t be enough forever.   And eventually you realize the words are there again.   And then one day you find the courage to say them.

I didn’t know it when I woke up this morning.  But turns out today was that day.     

And it feels a little like finding an old friend that you missed.   Or maybe I’m just finding myself again.  Or maybe I'm just finding myself period.

I found this photo of my mother last year and couldn't get over how much she looked like me.   I'd never once thought that before.   And that was the first time since her death that I genuinely felt like she'd always be with me.