“Sometimes the right decision feels like the wrong one.”

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With the last two blogs we have established that I had decisions to make. These decisions weren’t to be taken  lightly and that was a huge stress on me. Whatever I chose will be life changing and will affect my quality of life. I don’t think I can adequately describe my true feelings. I have good days and bad days. With my fate in front of me after meeting with the genetic counselor my odds were as follows : I am in the high risk age range as well (35 yrs-45 yrs) BRCA is short for BReast CAncer.

Breast Cancer 99.7% (hormone/estrogen driven)  normal rate is less than 20 percent

Ovarian Cancer 85.3% normal rate is less than 6 percent

I am also a higher risk for Pancreatic Cancer and Melanoma (currently no screenings available)

Ok, so there are the numbers in front of me. My personality will  not  allow me to handle the high risk  screenings every year, and besides I HATE those tests! I would have to do them every 3-6 months with some quite invasive methods of testing’s as well.  The financial side with each test costing upwards of $1,000 out of pocket and I would ALWAYS have to have these screenings done. Now I will say that anyone that chooses that path I respect fully, I just knew that my daily everyday life would not be the same and I didn’t want to constantly wonder if this would be the day? Did I mention that I am constant worrier?

I could also take a anti chemo drug the rest of my life that would lower my chances by 30% I never weighed this option. The risk was still to high for me and lets be honest I am not going to remember to take a pill every day. One of the reasons I have 3 kids, couldn’t remember to take birth control pill every day!

I could not bury my head in the sand, I did want to! I wanted to just act like everything was fine, my anger for knowing and taking the test has subsided. Knowledge is power, and I am cancer free at the moment so the ball is in my court and can make some choices while I am able to and have more control of the outcome. Here is what my deciding factor was.. My 3 beautiful daughters, its that simple. I had to be here for them. I had to be brave for them. We learned that they now have a 50/50 chance of carrying the gene themselves. If they choose to get tested as an adult and decide to take the preventive route I can be there and support them 100% since I have been there and done that. I still wish that I had personally known someone who had been in my shoes, that’s what helps when you can be empathetic. I watched my dad die of cancer, never would I want to put my kids through that and if I have this knowledge then I need to minimize my risk as much as I could. I cried and cried and cried but I knew what I had to do. I needed to have a double mastectomy and total hystectomy with ovary removal. Not going to lie I had a pity party. 35 years old losing both breasts and facing menopause scares me to death, still does! Beats the alternative thou right? But still as I write this I wonder if I am making the right decision, am I being dramatic? What if? Can I really do this? My breasts is the hardest part for me. I am a woman and as anyone else has insecurities and flaws and I have had 3 kids so definitely not perky and early 20s, but they are MINE and I personally am partial to them. The fear of being less desirable lingers, will my husband leave me? will I have a stigma attached?  Tons of questions still  running through my mind. How do I tell people? What judgments will be made?

Here is the next kicker, needed to happen fast.. Since I had already had precancerous cells on my ovaries a few years back and had started to develop lumps on my breast, my breast specialist thought it was my bodies way of saying “Your time is coming..” and If I was to develop cancer I could NEVER take hormones, well shit… Have you met me? Believe me I need my hormones! I went on the consult train and was told to prepare to have surgery in 4-6 weeks.. What? this is happening this year?????!!!

Again, I have had amazing support. People tell me that I am so brave, so courageous. No I am not! I am scared out of my mind. I am no hero. I ,for one am not the only one that has this gene (immediate family, yes that we know of) I just feel like math is math and the numbers don’t lie. If I wait until I have cancer and have to sit my kids down and tell them their mom may die, and me knowing all along that I could have prevented this but was just to scared is not an option for me. Knowledge is power.

December 5th,2016. I will undergo a double mastectomy with reconstruction and a complete hysterectomy. 3 surgeries at once,  3 surgeons.. 8-10 hour surgery. 12-16 week recovery.  This will be the day that my life changes and I am hoping that all goes well, I will find the courage, the strength, the peace, I will not let this define who I am, I will beat the odds that are given to me.

I made my decision.

Genetics….They Really Do MATTER

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As I stated in the first blog post, I really had not even heard about the BRCA gene let alone knowledgeable about genetics and honestly didn’t really pay to much attention to my family history. It was time to be an adult and dive in. I will blog more factual info on this gene later, but basically as told to me by my genetic counselor..”Its not a matter of IF its WHEN I will develop cancer”

When I hung up the phone after getting the call that I had in fact tested positive for BRCA, I was in complete shock and despair, tears immediately swelled in my eyes but somehow I kept them contained. You might as well have told me I had cancer.  I experienced so many emotions that day, actually for the next few weeks I was on an emotional roller coaster. I had shared my results with my  husband , my aunt, my mom, and 2 of my best friends that evening.I was still numb, I couldn’t process. Then the anger came and I was so pissed that I had even taken the test! Let me give you a background on my personality (I am OCD, I worry ALL the time, when it comes to health I am a pessimist, I worry about everyone and not myself.) I felt like I had been given a death sentence and I knew that my days were numbered. I will admit I did not go into this mentally prepared for these results, and several people have told me and I even watched a clip from the ‘Doctors’ that said when you do these types of testing DO NOT take them if you can not handle or prepare for the outcome. That was me in a nutshell I couldn’t handle.

24 hours later I couldn’t even talk about it, I didn’t want to talk about. I was truly depressed, I had these life decisions in front of me and no one could tell me what to do, it was all me. I am a very happy person on the outside  and most people will never know if I am struggling, I was struggling probably more than any other obstacle to date. I would go to work laugh, smile and act like not a care in the world. That night after I found out, I left work went home, went straight to my bedroom and broke completely down. I cried for 5 straight hours. I knew I had to deal with this and I knew that whatever avenue I took my life would never be the same. I knew that I had a husband and 3 daughters, I couldn’t be selfish. Those 24 hours I was living outside of “me” I wasn’t able to be a wife, mother, friend, boss.. nothing. I was lost.

I am a very spiritual person, I pray all the time! I decided that this is what was going to get me through. I also believe in the power of prayer and knew I needed prayer. I had started telling my coworkers, friends and decided to make “Facebook official” and got resounding support, I also learned at the moment that sometimes people say the stupidest things because in all reality they don’t know what to say! I also learned that nothing….NOTHING anyone says was helping. I also started learning a lot about myself, (you mean to tell me at 35 I still had things to learn about myself! WTH?!) I was learning more about my marriage, being candid I feared it wouldn’t or won’t make it, I was learning more about my friendships and just how strong they were, I was learning that I can’t do this alone.

My appetite was gone, my faith was wavering, my sense of humor was diminishing, my sense of self was hiding, and depression was on the horizon. I couldn’t eat or sleep, resorting to sleeping pills just so I could at least get a 4 hours of sleep and fearing I would create a new set of problems with codependency on sleeping pills. This isn’t the Kathy that I am, this shit has to stop. I can’t let this define me. I have to make a decision and move on!

 

 

 

New Chapter in Life

When just a phone call changes everything

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brcaSept.28th,2016 is when my life changed forever. I will start from the beginning leading up to this day. March of 2016 I had discovered a lump in my right breast, I was a little concerned but kinda played it off and was going to wait until my yearly exam in September but decided to call my gyno anyways. They wanted me to come in within that week and have an exam, so I thought to myself “maybe this is a big deal..maybe I should worry?..what if?” I was sent for a mammogram in April 2016. Ball of nerves, I, by far was the youngest lady in the waiting room. I had several women ask if I had accompanied my grandma! Of course, I consider myself pretty modest for having 3 children so really do not feel comfortable.  I get called back and get prepared and am topless for about 20 minutes.. Joy! Joy!  A sense of relief as they tell you your results while you are there and I was cleared! Hallelujah! I got dressed, put on deodorant (you aren’t supposed to wear any for a mammogram) went to work with a smile and didn’t look back!

Fast forward to September 1,2016. I had my annual well woman exam and the lump had not gone away but in fact gotten bigger! But my mammogram come back good, so no worries, well that’s not the way that works. Doctor was very concerned and sent me to see a breast specialist and told me to really dig into my family history and that I should consider that this in fact could be cancer. Great! Freaking Great! Oh and I needed a laparoscopic surgery for possible endometriosis the following week, this appointment was a dousey!

I met with Dr.Frame (breast specialist) on September 8th,2016. He did a biopsy and ultrasound and consulted with me, again uncomfortable as I am sitting topless. I Feel like I should be on parade and waving my Miss America wave. We discussed family history, which I do have strong family history for breast cancer and my dad passed away at the age of 48 from pancreatic cancer, he suggested that I get tested for the BRCA gene. I consented with the notion of “sure why not, I mean I possibly can’t have this gene.” While I am filling a vial full of spit he is educating me on my options, I will admit that I truly was not concerned. I mean again I don’t have the same thing that Angelina Jolie has.

If the test is positive here are the options

Option 1: Do nothing and bury your head in the sand

Option 2: High Risk Screenings, if cancer develops (ovarian and/or breast cancer) hopefully we will catch early stages

Option 3: Prophylatic double  mastectomy  and either radical hysterectomy or oophorectomy

But again…no worries! I have a 2 percent chance for testing for this mutation!

I leave with a sense of relief. They said they will call with the results but not to worry in the meantime since I have no immediate family testing positive for the gene (yet).

September 28th,2016 4:14pm phone rings and I answer which for some reason I had the ringer on that day. My phone is always on silent.

“Ms.Williamson this is Bobbi from Dr.Frame’s office and I am needing to schedule you an appointment as soon as possible, are you available next Tuesday?”

I am sure I set on the phone in silence for a good 10 seconds before my reply “Yes”

“Your test results are positive, we need to discuss a game plan.”

SHIT………….