Previvor

This is my journey

I am Barbara Ann and this is my attempt to document the road that I am embarking on. The plan is to share my story and hopefully encourage someone else along the way. In 2015 at the urging of my Gynecologist I had the gene test to determine if I carried the BRCA gene mutation for Breast cancer. Having lost my Mom and my Nana to breast cancer my doctor had always monitored me as closely as possible. So there I am in his office awaiting my results....
yep I am BRCA 2 positive.

And so I began the journey. My Gynecologist urged me to have a Prophylactic Double Mastectomy!
He asked me what I would do If I was diagnosed with Breast cancer, and I told him I would have the surgery without question! To which he replied, then the question becomes why wait?
Why wait, yes that is indeed the question, but it has taken me 4 years of monitoring to figure out the answer.
I am not the kind of person that jumps into something quickly.
I have to turn all the stones over so to speak. Think, research, make a plan. Get my head around my decision.

Some woman come to the surgery decision very quickly and are confident in their choice. I unfortunately am not that woman. I am rather envious of them actually. I am not much about these boobs. They have never looked right as they hang straight down since they arrived on my body. According to my plastic surgeon, it is a hereditary thing. That explains why they look like my Nana's breast LOL! I can remember being fourteen years old in the locker room watching some of my classmates running around the locker room changing and showering. I didn't look anything like them! Needless to say I never showered at gym!

So I went and spoke to a Breast Surgeon and a Plastic Surgeon to gather information. Wow, so many terms, and plans. They all knew what they were doing, they do it everyday! I was completely lost in the cloudiness of it all! So I made the decision to stop, wait and try to adjust to the whole idea. I looked at picture after picture. Read articles, joined a list on Facebook which I highly recommend and found the FORCE group (Facing Our Risk of Cancer Empowered).
I couldn't speak about the idea of having my breast removed without tears rolling down my face. I now would have a Breast MRI once a year alternating with the Mammogram I have been getting once a year since my thirties.

My mind swelled with so many thoughts! I was 55 years old, type 2 diabetes,high cholesterol, stroke risk (I have had a TIA) and a Papillary Thyroid cancer survivor of ten years! Part of me thought I had already done battle with cancer and to be honest, I didn't know if I had the strength to fight again either prophetically or by diagnose. Cancer is a tough opponent! I have never felt as if I kicked cancers ass as some woman, I simply am grateful that cancer didn't kick mine.
Do I just have the Mastectomy without reconstruction? I am not over joyed with the girls but I honestly do not think having nothing is right for me either. Is that crazy, I am now 58 years old! What does it matter at this point! Or do I have reconstruction? Months of work, more surgery and unknown possible complications.
So for 4 years I have pondered all of this on and off, up and down.

I turned 58 years old this past March. My Mom died at age 59. My mind had sudden clarity. I picked up the phone and called my primary care manager for a referral to the Breast Surgeon. For the first time the tears did not flow down my cheeks. When I finished the phone call, I called the Plastic Surgeons office. I could hear the voice in my head saying "we're doing this".
I now have a surgery date for June 20, 2018. I wish I could tell you that I am completely settled in what I am planning to do. I am not! I am settled with the choice to lessen my percentage risk drastically. I am settled with the fact that I have choices, that I will not have to loose lymph nodes as I have already lost 90 lymph nodes out of the 200 we have in our neck with my modified neck dissection from the Thyroid cancer, or have chemotherapy or radiation. My Mom suffered so with Lymphedema. These are definite pluses!

It is May 26th and I am calm at times and overwhelmed at other times. Some days I work feverishly preparing list and finishing things that need to be done before I am down and can't do them for quite a while.
I have a kennel so there are dogs to groom, a garden, flowers, bills, groceries, 7 acres of grounds to maintain, laundry and a house. I am a very busy girl and that is how I like it! God bless my husband as a lot of this is going to fall on him until I recover.
Other days I seemed to be crippled by thoughts that seem to zap my energy and make me unable to focus on the tasks I need to accomplish. I am holding my breath for June 1st! For some crazy reason I feel like that starts the official countdown as I will be in the month of my surgery date and each passing day will bring me closer to it! I am dreading the ride to the hospital that morning. Having had three neck surgeries and a hysterectomy, I know how anxious the ride will be for me. I am grateful to have support but in the end, it is me that roles into that operating room. And the tears are now flowing!

So I plan to write & video some along the way. I am so grateful to other woman that documented their journey on You Tube. They were so brave and their openness was so helpful to me. I did not find anyone in my age bracket that had documented so thought maybe I can fill that void.

May 31, 2018
It has been a rough couple of days! My anxiety did not wait until June 1st like I had assumed it would. Someone on the Facebook list I am on asked if anyone had taken a second gene test to be sure of the results. I thought about that and it played on my mind a bit so I decided I would have a second one done with a different company. The results came in yesterday and I had a talk with their genetic counselor. Yes. my results were the same, BRCA2 positive. We went over information that I already had and at the end of the conversation I said "Let me ask the big question", what are are my percentage risks at this point. She put some information in a computer program and the results were that at age 58-85 I had a 38 percent chance of developing breast cancer. Hmmm that is better than what I was told 4 years ago (85-87%). Some how it has shaken me up quite a bit and caused me to be a bit non functional for the last two days. My mind has gone in a million directions. Should I wait and just keep monitoring? Maybe I should just have the surgery without an reconstruction and save myself from all that is involved with that. I am a realistic personality and I can over think things in my quest for making clear decisions. I know it is going to take me a little bit to readjust.

On to surgery?

So my surgery was scheduled for June 20, 2018. I did my pre-op the week before. Worked hard to finish things that needed to be done at home. As the days got closer to the surgery date I was resigned the fact that this had to be done. That didn't make it easier unfortunately. It was really challenging to hold on emotionally but I was doing it. On June 19th I had my appointment with the Plastic surgeon so that he could mark me up for the breast surgeon the next morning for surgery. I was getting showered and drying off when I felt a twinge under my left breast. I have a cyst that I have had issues with getting infection. Have had antibiotics for it twice before and over time it comes back. The Plastic surgeon knew about it and planned to remove it during my procedure. The twinge made me know it was infected again.
I had checked it 2 days before and it looked fine. So I go to my appointment. I told my doctor that it was very angry. He looked at it and said there is no way we can take you to surgery tomorrow. My eyes filled with tears, I couldn't believe what I was hearing. Through tears I asked him what about my abnormal breast MRI. He told me if I had cancer in both breast at that time they could not take me to surgery. So he put me on antibiotics and made a follow up appointment for two weeks later. Gotta tell you it was overwhelming, not just for me but for my husband, son and friends but nobody more than me. So I began to question why did God stop this. I thought maybe I am not suppose to have reconstruction. It would be so much easier to recover without it. It is amazing all the thoughts that run through your brain. Realizing the risk of infection with expanders, it makes make complete sense that you certainly wouldn't want to operate knowing infection already exist. So I realize this was a blessing and not a curse. Obviously infection was brewing and had the cyst not presented the infection, we would not have know and would have proceeded with surgery which would probably have caused a problem with the expanders. So that has helped to settle my mind. This has been a roller coaster ride and I am not sure how it will go from here.

June 24th: The slowest passing of time! It is just Sunday and I have to wait another week and a half before I go back to the Plastic Surgeon. Wondering if I have breast cancer or not has been a bit overwhelming to say the least. I function good some days and am a bit frazzled others. Part of me wants to hurry and get to surgery and part of me doesn't want that day to come!

Things you are never prepared for:

I was put on Bactrim antibiotic for the infection in the cyst. Bactrim is a sulfa drug that some folks can not take. I had taken it twice before without issue. I needed to take it for two weeks. So a week and a half into taking the med I woke up at 6 am with one of my eyes swollen shut and a rash that went about 12 inch wide pattern that ran from my wast to my breast line on both sides of my body. My face was welted also. I knew it was an allergic reaction so to the ER we go. Steroids, antihistamines and 4 hours later we came home. I had done some fence clearing with my hubby so they really felt I had gotten into some poison oak or sumac. They said it was not the Bactrim because I had taken it before without issue. I called our Pharmacist to double check her thoughts. She said it was not likely the Bactrim because you are either allergic to sulfa drugs or your not, there is no in between. That was the only med I had changed in my life so I was not confident with that explanation. So I went to see my Dermatologist! He is a genius truly! He said I see hives and we are going to fix it! So 3 weeks of meds and wearing nothing but a night shirt and things started to improve. So back to my Plastic surgeon I go. He said we needed to wait for 4 weeks to be off the steroids because they suppress the immune system. I am type 2 Diabetic and he had warned me that my risk of infection was 25%. I could hardly wait for them to call with a new date! I was so ready to get on with this thing! Then they called me later that afternoon with a new surgery date! August 29th! My emotions went into a tail spin!

Honestly it shocked me! The internal thought and fears plagued me day and night. I had read a lot or info an while some threads of this story maybe similar to what your story will be it will not be exactly the same. Some things your just not going to be able to figure out until your are in your own recovery. I purchased a electric recliner to sleep in. I wish I wish I had considered one with lifting capabilities also. I am 216 pounds, not great core strength and I m 58 years old. Getting up out of the chair was an issue but by day 3 I was actually able to get out and down lifting with my legs.
My hubby put his hand behind my back to help me move forward in the chair. You can not pull with you arms! You can not life more than 5 pounds!

I was concerned about going to the bathroom. My sweet hubby would wipe me when I peed. I was able to wipe myself when I had a BM on day 3. Anesthesia can really constipate you! Take good precautions for that and don't wait for the docs to tell you because they normally won't. I ate a taco salad two nights before surgery, and a chefs salad the night before surgery. I also took 3 stool softener pills each of those nights as well. I continued to use a dose of Miralax in my morning coffee and the stool softener tablets every day. I had a very easy, smooth bowel movement the morning of day 3! This is a celebration my friend, take it seriously! My surgeon made it clear that he would rather me have diarrhea then to be constipated! You are going to realize very quickly that you use and move your Pectorals muscles for doing a whole lot more than you ever imagined! Eat a good diet! Bean soups or chills work really great the first few days after surgery. It takes time for your colon and bowels to resume working after over 5 hours of surgery and anesthesia.

The torchering I did to my self!

Surgery day arrived!