So we try to find rhythm and timing, understanding and confidence in the adversity we are faced with. We must keep moving, and move with it like a herd of horses running free. They may trip and fall but they always get up and keep on moving. "Keep on moving no matter what!"
We haven't updated this blog in a while and wanted to share how our continuous journey is going. Amanda is strong and fights each moment with grace. Don't get me wrong, there have been hard times and lots of tears. At the end of the ride we are eternally grateful to be around to sit astride this complicated journey's back.
Amanda had her first of multiple surgeries for her reconstruction on February 10th. Due to the fact that she had her double mastectomy first, then radiation, then a delayed reconstruction, it made the surgery more difficult than we had expected. I will put this in my layman terms the best I can. The surgeon put tissue expanders on both sides to slowly stretch out the skin to prepare the breasts for the implants. She also had what is called a latissimus dorsi flap procedure done on her left side. The left side was the side where the cancer was and more tissue was removed on that side during the mastectomy. The lat flap is where they take an oval flap of skin, fat, muscle and blood vessels from the upper back to reconstruct the breast.
We thought this would be a little incision. Turns out this was more than half her back and probably the most painful of the incisions, which were multiple. I was surprised how little the incisions affected me on a visual level. Other than the reality of seeing your partner have multiple wounds. Words can not explain the pain I felt for her, however Amanda's spirit helped my confidence, helped me to understand it was ok and they were just scars not her soul.
She was under anesthesia for about five hours and the first two days post surgery were pretty rough. The hardest part was Amanda had trouble getting her breath from the pressure of the expanders. With all the pain I think she became a little claustrophobic. She stayed strong and fought as she is my own warrior queen. My cousin Kathy came out for a few weeks to help with the children and let me focus on Amanda.
Probably the roughest part of this go-round was keeping the kids off of her. She wasn't supposed to move her arms much for a while and Amanda really struggled with not being able to care for the kids the way she is used to.
We went through cleaning the drains again just like the mastectomy and had to doctor the wounds every day.
Everything was going along ok until early one morning 12 days after her surgery. She woke up with extreme pain in her left groin that over the course of a few hours started going down her whole leg. Her plastic surgeon wanted us to go to the emergency room immediately. To make a long story short, Amanda was diagnosed with a giant blood clot that covered most of her left leg. The pain was hard to watch and we were scared at first due to preconceived notions about blood clots. The funny part of this story was that I was a little under the weather and had been throwing up all night the night before. I was pretty pale and the nice nurse at emergency seemed more concerned about me than Amanda. I kept telling him I was fine but it got to the point that the nurse forcefully admitted me. So there we lay, husband and wife. One sick with the flu and the other with the worlds largest blood clot. We were quite the lot. In sickness and in health.
Amanda was admitted back to the hospital for another four days so they could get control of and keep watch of the clot, which was a complication from the surgery. The good part was that she was forced to get some rest that she couldn't get at home with the kids. We now had the help of the amazing, "Gogi,"called by our children, Amanda's mother. She held down the fort as Amanda regrouped in the hospital.
Amanda was sent home having to give herself blood thinner shots for a week and will have to stay on an oral blood thinner, Xarelto, for about six months. Her leg will be fine and was just another twist and turn on our journey.
Due to the blood thinners, Amanda's timeline to have her implants put in has been pushed back a little bit.
The expansions have gone fine for the most part. She is having them expanded a little at a time. It has taken some getting used to, having the foreign expanders under the skin, they can be quite uncomfortable for her. This hasn't stopped Amanda from getting back to riding horses as often as possible and being her normal force with the children.
Last week, Amanda had her routine 3 month follow up with her Oncologist, Dr. Robyn Young. Amanda was planning on having her full hysterectomy done at some point the next couple of years after her reconstruction is completed. (Due to the fact she has the BRCA1 gene mutation and is at higher risk for Ovarian cancer.) After seeing some new data, Dr. Young feels it is best for Amanda to stop producing estrogen immediately. She has seen new data that shows higher survival rates for triple negative, BRCA1 survivors when they are no longer producing estrogen. So, last Wednesday, Amanda started receiving Zoladex shots that basically "shut off her ovaries." Putting Amanda into menopause. She will continue with the shots until her reconstruction is completed. Then she will have the hysterectomy done as soon as possible after that.
I am really going to have to put in an extra effort and try to be understanding of what she is going through as a woman. Just like the horses, never take it personally!
Some would say what a rough, horrible journey you guys are on. Maybe, but we never forget how blessed we are for every breath, hug, smile, kiss. The friends that have showered their love upon us, the individuals we have met who have touched our lives and showed us how understanding and compassionate the human species can be. Nurses that took their time regardless of their hectic schedules, doctors that went out of their way on their days off.
Probably the most inspiring were the new friends of Amanda's who were just beginning their cancer journey that take the time to support Amanda on the other side. Over time, when Amanda was scared, she thought of these beautifully strong women and how she was inspired by them.
Like I said before, the journey chooses us. And we just gotta hold on for the ride.
In sickness and in health
Amanda with Violet and Ryder the night she came home from the hospital after her surgery
Most recent picture of the four of us, April 2016
Amanda playing for our Justina
