Monday, April 28, 2014
I was asked to speak to a classroom full of Physician Assistants at the University of Utah today by my genetics counselor, Wendy Kohlmann. I agreed because I don't mind speaking in public and also because I love the idea that my experience could be helpful to future doctors and others facing BRCA1.
I've had my friends ask me how it went and I thought I'd share a bit about that experience here on my blog. You know the blog I don't keep very updated (because frankly after the surgeries all happened I didn't feel like sharing at the time...I'll fix that later).
Anyway, I had the privileged of speaking with a 53 year old gentleman, George who has a very rare genetic mutation that causes colon cancer. His father passed away at age 23 (53 years ago) and his grandfather before him. It's called FAP for short, but sadly I'm not good at remember medical terms. He was one of the first to be officially diagnosed with this hereditary mutation and has been part of clinical trials to figure it out every since. Of his four children, two of them have it and are currently being treated. He was a simple man and so willing to put his awful experiences to good use. Love him and it was a nice contrast having us speak together. Just to put it in perspective...1 in 400 people are BRCA positive and 1 in 8000 people have FAP. We each shared our history and experience with our mutations to a class of about 40+ students. Then we opened it up to questions. We spoke to the group for about 1 hour and 20 minutes and had such a great response from people saying thank you for put a face on genetic mutations for them.
I loved that we were able to talk about what we would love to have PAs do for us or in our experience could have done for us. These students seemed to genuinely want to be better doctors. And for me, I was grateful for the opportunity to share (probably over shared).
Most of what I shared about myself and my mutation I have already posted about here on my blog. But here's an excerpt from my presentation that my husband really liked and told me to share...
I never really considered myself a “Mutant," that was until I was diagnosed with the gene mutation BRCA1. You know, the cancer gene that Angelina Jolie made popular in 2013.
So we are big fans here at our house of any X-MEN movies and apparently them being mutants was not always met with acceptance. However, when I imaged being a mutant or let's say "super hero," I thought of having super strength or flying because those are cool. I never I thought that carrying the hereditary breast cancer gene mutation a super power. But now I’m thinking more and more that it really is a super power. They say power is knowledge right? Why wouldn’t the knowledge that I am at increased risk of both breast and ovarian cancer a super power? I would like to think that I could kick cancer in a battle of strength and stamina and I could soar over treatments like chemotherapy and radiation, but why would I want to if I didn't have to. And more then anything that I could live a long cancer free life to watch my children grow.
And I realized more then anything, I wanted to take the BRCA test for my future grandchildren. So of course there is the burden of knowledge, that much is true. But I’d rather carry a burden of knowledge than an appointment card for chemo.
Did you know that a recent study regarding low utilization of BRCA testing reported that fewer than five percent of people who should consider having BRCA testing have learned about it and followed through with testing thus far. Fewer than 5% is awful.
I will forever be grateful for this amazing lady, Wendy Kohlmann. I entered her office four days after burying my father-in-law after his battle with colon cancer. I was nervous and pretty uninformed. She was patient and kind. She was my connection to Huntsman and the Doctors I would eventually need to work with. She was the kind face I needed during a really ugly time in my life. I can never thank her enough for her amazing support of me. And if she asks me to speak again...I'm there!!
Contact their clinic coordinators Mike Wynder or Chris Moss at 801-587-9555.
Monday, March 17, 2014
If ya catch my drift... Um... She's alright she says "it hurts like *insertswearword*" that's all I'm getting from her(and she expects me to get good material off of that). I guess I'll talk about myself then... Here's my update: I still don't like answering the door, I still hate the sound of people chewing, I hate GEICO commercials, etc. oh! I got to dissect a pig heart today... It reminded me of the steak I ate yesterday. Let's just say I won't be eating pig for a while. My mom really wants me to feel her new twins(I blame the pills) so peace out.
Thursday, January 9, 2014
But first a little honesty....I'd like to say that this is a day full of celebration and happiness, but I believe I'm suffering from a touch of depression or PMS or withdrawls...not quite sure right now, but I have been very emotional the past couple of days and cry at the drop of a hat.
Okay back to what I remember about that day....
I remember driving to Huntsman Cancer Institute with my mother and husband. We'd made arrangements for my mother-in-law to bring my kids up after school since my surgery check-in time wasn't until 1:00pm. Sadly check-in time and actual surgery time are far from one another...didn't actually go into the operating room until 3:00pm or shortly after. I don't believe I was done with surgery until after 8:00pm which made for a long day for my family...especially since I don't believe I was wheeled to my hospital room until after 10:00pm.
I have a couple of memories that are still very vivid to me about that day. First, waking up from my surgery in the recovery room. I remember a sweet nurse sitting by my bedside that watched my vitals and talked sweetly with me names Shauna (loved her). However, what I remember most was waking up and the realization that my breast had been removed and feeling this overwhelming sense of loss. I began to sob and sweet Shauna held my hand. The second memory was arriving at my hospital room and my kids, mom and husband gathered around my bed holding my hands and showering me with so much love.
I think I'll blog in a separate post about the ups and downs with my first month of recovery. And instead focus on what is in my head and heart right now.
So many friends and family have shown me great love and compassionate service, for that I am very blessed. Do I regret my decision? That's a trick question...there have been many times I've wondered "what the crap I was thinking"...but regret as in wished I had not done it, not really. The recovery has been hard at times, but I have had the opportunity to watch my sweetheart of the past 22 years serve me with such great love and I love him so much more now because of that. I didn't think I would, but I have definitley mourned the loss of my breasts...but it's one of those things that unless you've been through it, it's hard to explain.
I did read an amazing blog post last night that I must share with you. It's called, "God Will Give You More Then You Can Handle: I Guarantee It." I have had so many tell me that I am brave and amazing and I don't feel that way at all. I have also been told that God would not give me a burden I could not handle and that never sat well with me. But I do believe with all my heart I would not have made it this far without my Heavenly Father. Please read the post when you have some time...it is everything I needed to hear a month after my mastectomy and gave me such peace. I wanted to share.
Even now I was was writing this post, a sweet friend Nike, that I didn't even know she knew where I lived... dropped by the sweetest surprise for me and simply confirmed that my Heavenly Father is VERY aware of me, how I feel and my journey.