Saturday, February 27, 2016

4 years later. . . Are we out of the woods yet?

February 27th marks 4 years since my mastectomy. We call it a number of things in our household boobiversary, mastecoversary, the big day, or in front of our children “my surgeries.” We’ve celebrated in the past with fancy dinners out but each year the celebration gets a little smaller. This year I think it's going to be Pasquale's take out after the kids go to bed. I had to go back and figure out exactly how many years it was because in so many ways it feels like it couldn’t possibly be the long ago.  My easiest measuring tool is thinking about my kids and the ages that they were at the time. Well. . . 4 years. When I look back on everything that my body has been through...it’s a lot!

There’s the classic cancer cliche that cancer was a gift and it made them a better person. In no way, shape, or form would I say that these faulty genes and all of the things that followed were a gift. And did it make me a better person? No, but it definitely is a big part of what makes me who I am. Still 4 years later, it’s a part of me.

Do I think about it every day? No. I still do think about it a lot though. I think about it when I catch a glimpse of myself in the mirror on the way to the shower. One peek at those scars and I remember. I think about it when I’m exercising. I can be running or in the middle of a combo in a group fitness class and I’m fine. But ask me to do a push up and I remember. I remember it at intimate moments when I long to feel them touched. I can feel warmth of his hand on my skin, but no real sensations. I think about it often, about my cancer risks and about the loss of a part of my body even though my results look and feel amazing.

Am I happy with the decisions? Yes. I would do it again in a heartbeat. The pathology report following the surgery showed that the mysterious lumps were fibroadenomas but there was also hyperplasia, which is the initial stage in the development of cancer. I made the right choice at the right time. I knew in my gut that something was wrong. I knew that there was a reason why our third pregnancy was a miscarried and I followed my instincts. There is no doubt in my mind that my choice to have a preventative surgery saved me from cancer.  The choice to do this and all of the surgeries have led to additional issues, but compared to cancer, I'd take it any day.

While I’ve made it past what I hope were the hardest parts--all the anxiety and decisions and surgeries, I don’t know if I will ever really feel out of the woods.  Are we out of the woods yet? Are we out of the woods yet? Are we out of the woods yet? Are we out of the woods? Sorry, little Taylor Swift break. I do love this song and connect with so many parts of it.  Mitch and I never moved the furniture so we can dance, but I do hope that I’ll be able to say Are we in the clear yet? good.  

I don’t feel the anxiety about developing cancer that I once did, but it’s not totally gone. It sneaks back occasionally; thankfully it leaves quickly. I had my anniversary checkup with Dr. Colette two weeks ago. I stayed busy at work right up to 15 minutes before the appointment and returned to work afterward, but when I was finally home later that night it caught up with me.  Mitch saw me for just a minute as we were coming and going between busy days at work and he could tell.  He sent me a text saying “what’s wrong” and immediately thought something was bad at the appointment. I just needed to cry. I needed to let it out. By Monday, I was fine and back to normal. Everything went well at the appointment, the appointment just brought the stress back to the forefront. And now it's beyond me, it's thinking about my kids. How will they handle all of this? What can I do to help them from having to go through this?  

I will always wonder am I safe? Is the skin I have left cancer free? Did what would have developed in my breasts move somewhere else? What about the other cancers associated with BRCA1?  Or as Taylor Swift says, are these monsters just trees? I have this desire to say that that it’s more than just an anniversary, to say “ I’m cancer free for 4 years” but I can’t bring myself to say that because I feel like I’ll never know for sure and that saying that would be in some way jinxing myself.  

My body has really been through a lot.  I made it through all of this, but now I have an autoimmune disease. I wonder to what extent the surgeries led to this? Doctors say that there is no connection to the BRCA gene and autoimmune diseases, but anecdotally there are a lot of women who are BRCA positive with autoimmunes like Hashimoto's, Graves, Arthritis, or MS. Is my body slowly attacking itself because of the foreign objects I have in me to make my breasts? 

I ended up crying at another doctor’s office when I had to share my health history and I heard it all together like that. I swear I am not usually a crier. I’m the opposite; sometimes worry that I come across as an emotional robot or as the least sympathetic person on earth as I’m dealing with crying kids at school. So much life has happened since I found out I was a carrier of the BRCA mutation and it’s overwhelming to think of all it. I found out I was carrying the genetic mutation in 2006, so it’s been 10 years. I don’t feel like celebrating that as an anniversary!

In last ten years, I’ve (not limited to medical, included events that cause high stress which can affect autoimmunity):
  • Gotten Married
  • Bought a house
  • Got a dog
  • Got a master’s degree
  • Had a child by c-section
  • Had another child by c-section
  • Taught for Dickinson, taught for Marian University, taught for Origo Education (occasionally at the same time)
  • Had mammograms
  • Had MANY ultrasounds not just looking at babies
  • Had a miscarriage
  • Had 6 MRIs
  • Had a double mastectomy
  • Had reconstruction
  • Had 3 rounds of fat grafting
  • Had a salpingectomy
  • Ran a lot of miles
  • Bought a different house
  • Fostered a child
  • Got a tougher job
  • Got another Master’s degree (almost finished!!)

I’ve had a bit of stress in my life but I’ve had a great partner able to help keep me sane throughout.
As I said before, being BRCA positive definitely is a big part of what made me who I am. It made me think that if I can handle this, I can handle just about anything. I need someone or something to reign me in now and again. Right now it's autoimmunity that's making me pause, slow down a bit, and figure things out. Here’s to hoping that someday I will truly feel out of the woods and in the clear.  
  




Saturday, September 6, 2014

My Grandma's Eulogy

Here's the Eulogy that I gave at my Grandma's funeral yesterday:

On behalf of our entire family, I’d like to thank you all for taking the time to be here today.  My grandma, Vi Selner, has meant a lot to many people, so your presence here as we celebrate her life and say good bye means a lot to us.  

My grandmother was a woman who lived a long life full of faith, hard work, and love.  

Grandma was steadfast in her faith. Throughout all of the challenges that she faced, she prayed. If you mention to Grandma that you had something tough coming up, she’d pray for you.  And she prayed a lot; sometimes saying the rosary several times a day.  When they were young, Grandma had all of her kids say the rosary kneeling by a chair every day during Lent and October, the month of the Rosary.  She made sure that all of her children knew their prayers for catechism teachers.  It’s only fitting that we are here today praying for her.  

Her work ethic was easily demonstrated in the daily life on the farm. She worked in the barn alongside Grandpa and her kids milking, doing chores, and bailing hay right up to when they moved off the farm into town. She was very proud to share with me during the one of our last visits that the farm, now owned by Wayne and Tammy, is just a few years away from being a century farm.    

Grandma was the disciplinarian in the family though.  The boys of the family have longer earlobes to prove it. The girls however were angels and never experienced this.  

Grandma loved her garden growing poppy seed, raspberries, and row after row after row of potatoes for her baking along with many other vegetables.  Anyone who knew Grandma, knew about and enjoyed her baking.  Her hard work in the kitchen fed all of us plenty of biscuits, kolaches, rye bread, and rice krispie logs.  She loved doing care packages of baking for the holidays.  Every grandchild knows that special feeling of seeing the wrapped shoe box waiting for you with a card, some treats, and lots of love from Grandma.  Barb is ready to keep this baking tradition going, Grandma even has enough ingredients stocked up to set her up for quite a while.  

She never believed in a secret recipe.  She gladly shared her recipes whether for rye-bread or hot dog casserole in the Holy Rosary Cook Book and with any of her children or grandchildren who wanted to learn.  I still cannot get my rye-bread to taste as delicious as hers, but I am thankful that she took the time to show me how to make it.  

In addition to her baking, Grandma was a good cook and thankfully she taught all of her kids well.  While they were on the farm, every Sunday Grandma would make a chicken dinner with all the fixings.  She believed in meat, potatoes, and dessert with every meal.  She was sure to cut the Sunday chicken into 9 pieces so every member of the family had 1 piece of chicken.  This may sound small to you, but Grandma would be the first to tell you that those home grown chickens were much bigger than the ones you would buy at the grocery store today.  The family all remembers spending time butchering chickens for family and friends.  I know that sounds strange, mentioning chickens in a eulogy, but that’s how Grandma showed you she cared. By giving you some of her hard work--her homemade baking, home grown vegetables, or even those farm raised chickens.  These gifts were from her with love and truly were priceless.

Grandma’s hard work and faith were important, but what was more powerful was her love.  Grandma loved her big family and getting together for holidays or any special occasion.  She always made a big meal, and with her sense of fairness, made sure that everyone got the exact same amount for a gift. She would be happy now seeing all the family together.  

Grandma and Grandpa spent a lot of time together going the boys football games and even continued this attending many of the grandchildren’s various sports.  Both Grandma and Grandpa had many good years with their friends in the card club with lots of laughs and fun times.  

We all know that Grandma had strong opinions on things; we hope no one is still offended by anything. But even this shows Grandma’s strong independent spirit. I believe it was this strong will that kept her here with us this long, through everything she faced in the last few years.  

She lived a great life: 86 years. . . able to see her children grow up, many grandchildren grow up, and even 12 great grandchildren. . .a life full of faith, hard work, and love.  


For all of us who are blessed enough to know and love my grandmother, the only things that will truly capture who she was are the warm memories that we each hold within our hearts.


My Grandma Died

My Grandma died.  We all knew it was coming.  But it's still tough.  She's battled thyroid cancer, had a major risky back surgery which the prep work for revealed that she had a heart attack at some point, an extremely dangerous post-op infection, and then found out her thyroid cancer spread to her lungs and bones.  All of this was in the last 3 years or so, with a major decline in her health happening over this summer.  We all, including Grandma, knew it was just a matter of time.

After she died on Tuesday, I told my mom that if she needed any help with writing the obituary I could help or if that I could do a reading at the funeral, whatever they wanted.  I checked my phone mid-morning at work the next day and I had a text asking: "Would you be willing to give a eulogy?"  At this point, I wouldn't have been able to say no to anything my mom asked me.  So I said yes and immediately text Mitch, "Oh shit. I have to do Grandma's eulogy."

The rest of the day, my mind is reeling.  What can I say about my Grandma...she baked...she played cards...she baked some more...she had complete disregard for expiration dates on food and drink...she liked to give toddlers grasshoppers (the dessert with alcohol.) This was going to be tough.  You see my grandma wasn't the typical definition of grandma.  She wasn't all warm, cozy, spoil the grandchildren with cookies and cuddles.

I did have a chance to get to know her a bit more than other grandchildren.  I am the oldest of the granddaughters and in a family that had clear roles about what boys should play and girls should play, I was often relegated to playing inside or off to the side.  This meant with Grandma and Grandpa.  But often she was busy in the kitchen while Grandpa did all the playing, cookies, and cuddles.  I have some memories of playing cards with them, coloring at the kitchen table with her, or even playing connect four with her (I wonder if that game is still in the bottom of the card drawer.)  My mom did my grandma's hair, so whenever she would come on a Tuesday for a perm or set, I would be around.  When I was in college, they'd go out to lunch afterward at a little restaurant close to campus that I could meet them at.  After having kids, I made sure to stop there during the summer with them whenever she was getting a perm so that the girls could get to know her a bit.

She was just not the type of you'd go to for comfort, to get lots of hugs and I love yous from.  I remember talking to her about family names during both of my pregnancies.  She was adamant that I not name a child, even a middle name, after her: Viola.  We went with Violet instead.  Her mom's name was Lottie, but I also wasn't allowed to name a child that "because they'll just get made fun of" according to her.  So what do I say in her eulogy?

Mom and her siblings came up with a page full of notes and things that they wanted me to include.  It was similar to my thoughts...she baked, she prayed, card club, etc.  But it also included gems such as "She had a way of pulling your earlobes when you were in trouble" and "We'd butcher a chicken every Sunday for dinner and she knew how to slice it in 9 pieces so every member of the family got a piece."  Well, after 2 1/2 hours of writing and a small amount of googling for ideas (with very little success), I had a draft.  I emailed it to Mom and my aunt and they both said it was perfect.

So now there was just the little issue of being able to read this in front of everyone at the funeral.  I was nervous.  I've done readings in church before, most recently at my uncle Dave's funeral at which I read way too fast.  So I practiced and practiced.  Providing I stayed un-emotional, I'd be fine.  Only the last two paragraphs got me choked up during practice.  My strategy for the day of the funeral: avoid my mother (when I see her crying, I instantly cry) and be an emotional robot.

At the funeral, I was emotional at first. It helped though that the funeral people did a good job with her and she looked very good.  During the last few visits, she really didn't.  She looked so thin, just hugging her I was afraid to break her (in fact, I had a dream last week that I reached out to grab her when she was falling and squeezed too tight and broke her.) She had an overall grey look to her at the end.  The photos below are much better to remember her by.  As the afternoon went by, we had a good amount of time to just sit back and talk with my cousins.  There was an interesting bit of time mid-afternoon when a bat started swooping around church, then eventually in the vestibule area where the viewing was taking place.  The male cousins were up for the challenge, caught the bat, and saved the day.  We joked about how that would move up someone for sure on the Grandma's favorite grandchild rating system that we always joked that she had.  I relaxed quite a bit.  I did not go and say another final good bye before closing the casket because I knew that it would be too much for me and wouldn't be able to get through the eulogy strong.  Everything went well, it was well received, and later the priest said something that I think really summed the whole funeral day up.  He was surprised by how at peace with everything Grandma was when he met with her.  That's kind of how I felt about it.  She's good now and I didn't need to be sad about it.

But now today, I am so super emotional.  I think that I held it all in way too much yesterday in my attempt to be an emotional robot.  Writing this today helped.  Thanks.  




Wednesday, August 13, 2014

Look what I found!

I've found a great summer job that had me traveling quite a bit this summer.  I got off the plane in Chicago and right outside of the gate was this beautiful advertisement!  I had to get my picture with it.

Thursday, March 27, 2014

Another year, another MRI experience

It's now been over 2 full years!  Today I had my annual MRI screening.  This is to check to make sure there is no cancer growth in the little tissue that I have remaining and to make sure my implants are still in good condition with no leaks or tears.  Which by the way, if I ever mention any strange feeling or symptom, Mitch is quick to blame it on possible silicone poisoning even though silicone has been proven completely safe.

I had a chance to use Bellin's new MRI machine.  It's a whole 4 inches bigger, you get to roll in feet first, and is built to have an "ambient experience."  I could choose the color settings and image projected onto the wall.  Despite the fantastic wooded stream setting and calming greens and blues being projected around the room, as soon as I was pushed inside it felt just like all the previous ones.  Including the pukes.  The minute they inject the contrasting dye, I get a horrible taste in my mouth and cannot control my body from trying to get that taste out.  I dry heave for about 20 seconds.  However, this is while pushed into that little tunnel in superman position with my breasts in these little hole things knowing that if I move too much the images won't turn out.  If I press the alarm button asking for the nurses because I cannot take it anymore, we'll have to redo the entire thing another day (I wonder how the expense for that would be coded for insurance?)  So I just stick it out.  I try to push my chest bones against the tray while my stomach lurches.  And then it's passed and I'm left for the last seven minutes of the scan with my eyes watering, wanting to wipe the spit from my mouth without an opportunity to do so.  I've had the same MRI technicians two years in a row though and they're brainstorming with me what we can do to fix this by next year.  This year we tried no food 4 hours prior to MRI combined with major hydration plan with obvious no luck.  Our plan next time is to pre-medicate with some over the counter anti-nausea meds and see if that helps fight the feeling.

 I already got a message today from my doctor which I assume when I call back tomorrow will say the images all look good.  They couldn't say this on the message, but she repeated twice that this is a good new message, no worries, call tomorrow when you have a chance.  I love my doctor's office!  I'll be there next month for the full check up and will post more after that appointment.



  
The new setting
       
The device for me to snuggle into


An older lady assuming the position


Follow this link for an article about the new device:
http://www.jrn.com/tmj4/news/New-medical-device-in-Green-Bay-could-help-injured-Green-Bay-Packers-225908811.html

Tuesday, February 11, 2014

This article is amazing

This article is amazing:  http://www.mamamia.com.au/news/double-mastectomy-photos-beth-whaanga/
red dress Dear Beth, thank you for taking off your clothes.

One beautiful, brave women shows what is really hiding under that red dress.  While my reconstruction was with a different method, I still had 31 total incisions and thus 31 scars on my body due to this.  This women shows clearly that "reconstruction is not a boob job" as so many people believe.

Friday, November 29, 2013

DONE!

Everything is done!  Another successful surgery!

I was more nervous for this one than last time.  I had this sense that something was going to go wrong.  I felt like things would be delayed or forgotten or something just because of it being the day after a holiday being kind of relaxed sort of a day.

As we were entering the hospital doors, my phone rang.  It was Dr. J's nurse. My heart skipped a beat.  I was so afraid the next words were going to be that we had to cancel for some reason or another.  But that was not the case at all!  They were running ahead of schedule and wanted to know if I could get there as soon as possible.

From that point on everything went fabulous! I got a fast pass through everything and was in surgery almost an hour ahead of schedule.  No strange recovery room neighbors, no nausea.  The only negative of the whole morning was that the nurse admitting me was feeling rushed and had very shaky hands.

I am still feeling the anesthesia.  I have been up for a few times this afternoon, but then like drop off to sleep immediately.  I am feeling kind of like motion sick as well (just sitting on the couch watching the girls dance and jump around the living room was making me dizzy).

While I am feeling ok right now and the recovery from it is a breeze in comparison to the others, I can say with certainty that this is absolutely the last time.  I do not want to wear a bear paw gown again for a long time!  I am hoping it will be 10+ years before I'm back to the second floor of St. Mary's hospital again.

 Some family fun the night before.


 The will be my last time in these silly Bear Paw inflatable gowns for a long time.

What happens when one little girl is left to her own devices.  

Saturday, November 23, 2013

Someone else looks like me!

A typical night in our house after the kids are tucked into bed, usually involves Mitch watching some DVD'ed shows while I work diligently on school work (or crush some candy, online shop, pin things, etc.).  I catch bits and pieces of what he's watching, but rarely pay much attention because he has a habit of getting into shows that are bound for cancellation.  Just the other night, Revolution caught my attention. Half way though, I interrupted him with, "Did you see that! Rewind it!" I'm sure he was thinking I caught something in the crazy storyline, but I continued "Look at her chest! It's just like me!"

Elizabeth Mitchell. Do you see that shadow to the right of her center cleavage?  She has concave areas on her chest! In other scenes you can see the concave spots in plenty of other areas.  So now this leads me to a ton of questions:  Is she like me?  Does she have implants? For reconstruction or regular purposes?  Or are they giving her shadows and a hollowed look because of the storyline? They are living in a worldwide blackout fighting a revolution nearly dying each day, thus not much access to food or fresh clothing. Either way, I kind of like it!  However hopefully after this final step, I won't look like that anymore.


Thursday, November 7, 2013

This is the last one!

I forgot to mention, this is my final reconstruction surgery.  This will be my last attempt.  If after this try, they are not perfect (or maybe just normal looking), then I feel like they don't need to be. I want some time away from the hospital.  I do not have plans to do another BRCA related surgery until I am 40.  :)

Wednesday, November 6, 2013

"Eat more sausage"

Never have I expected to hear those words come from a doctor, but they honestly came out of Dr. J's mouth at my latest appointment.  I knew I picked the right plastic surgeon!  

I had a quick check on my reconstruction looking particularly at the fat grafting that was done this summer.  It appears that I still need a bit more.  The problem is that all of my fat in this area was removed during my mastectomy (because that is a main component of breast tissue).  This leaves just thin skin and implant in some areas, with more muscle in others.  The skin falls into the open space.  I am not particularly fat in this area anyway; hence, Dr. J telling me to eat more sausage. Luckily I have plenty to spare in my post baby belly (am I still allowed to call it that 3 years later?) and don't need to change my diet at all. He said that it's like painting. Two thin coats are better than one thick coat.  The day after Thanksgiving I will be going for my second layer of fat grafting.  It will be the same procedure as last time.  

This is something that I know and feel totally comfortable with. I have even started thinking about if I can beat my time.  Last time it was 4 hours 50 minutes.  This time with it being the day after Thanksgiving, I am hoping not to burden someone with watching my children for too long forcing them to miss the good sales (or taking away their adult nap time from late night/early morning shopping the day before).  Let's see how fast I can get through that recovery room this time!  

The only thing I am not excited about is more incisions.  I counted up what I have.  From shoulder to pelvis, I have had 23 incisions over the past almost six years.  And 3 of those incision sites have been re-used for repeated procedures.  They are just starting to look better, hopefully a few of them will be re-used again this time.