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’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.  

1 comment:

  1. Renee- You truly have a gift of words. What a journey its been and what an amazing woman you are! You girls are so lucky to have such a great role model. If you look at your list of events, while yes they caused stress, just think of the amount of fulfillment, success and joy many have brought as well. I'm still going with that you are most likely the one from the class of 2000 to become president. Hugs my beautiful friend! Molly