Krystal and her husband Mike.
Krystal and I live in the same community and have mutual friends, but have only met in person once in passing at a school event. (Maybe someday we can find the time to grab a coffee and talk about our shared experience.) She has graciously taken the time to tell her story, and you will not regret taking a few minutes to read it.
Name: Krystal Ruby
Family: Husband Mike, Three Children – Tanner -9, Sadie-7, Dayton-5
Occupation: Industrial Hygienist for the State of Iowa
Hobbies/Interests: My number one hobby is definitely spending as much time with my family as possible! I love volunteering when I can and love being that mom who is constantly running around, taking the kids to their weekly activities. However, I also love kicking back at home on a Friday evening with family and watching the newest superhero movie while eating popcorn and M&Ms. I also love spending time with my friends. From browsing through aisles at Target with a Starbucks in my hand, to catching up with a bite to eat. I love spending time with the people who make me the happiest!
Diagnosis: Tested positive for the BRCA2 gene mutation in December 2015. My aunt had just been diagnosed with Breast Cancer a second time. She made the decision to get tested for the gene and was found to be positive. It had been 14 years since her first diagnosis. Since she was positive, her daughter, and sisters (one being my mother) were able to get tested. Everyone was negative except for my mother. That led to my brothers and me getting tested.
The test was quite simple, but nerve-racking altogether. We sat around this table and swished Scope Mouth wash in our mouths for 30 seconds and then spit into a tube. We did this three times and then had to wait for a few weeks. My brother got the first call. He was negative!
Age: 31
Type of Reconstruction: Bilateral Mastectomy/Expander/DEIP Flap Reconstruction
What was your initial reaction to diagnosis?
I received the call at work around 3:30pm. My mom had already warned me that the first thing the doctor would say whether we were negative or not was: “Is this a good time to talk?” Well I for sure wasn’t going to tell her No! I said yes as I was walking out of work. She says I have to tell you that you tested positive for the BRCA2+ gene. I still get choked up just thinking about that phone call. I was devastated. I remember telling her that I couldn’t comprehend anything she was saying and would have to call her back. I was shaking and crying and more importantly, I just wanted my Mom.
I called my Mom and let her know immediately. It was heartbreaking. I was sad, nervous, and scared. However, I straightened up and realized that I am so thankful I knew because I now was given the opportunity to prevent Breast/Ovarian Cancer.
How much time passed from your bilateral mastectomy through the end of your reconstruction process?
The first surgery took place on November 2, 2016. In April 2017, a second surgery was necessary to replace an expander that popped. The surgery I call the “BIG ONE” was May 17, 2017. That type of surgery can last up to 12 hours. There was an incision from hip to hip where the fat was removed from my stomach and transferred up to my chest (DEIP Flap Reconstruction). This surgery was definitely the most difficult of the surgeries. I had incisions on my breasts and stomach.
On December 1, 2017, I will go back in for another phase of surgery. This will be for nipple reconstruction, scar revision, and to fill any areas that “fat necrosis” took place. Basically that means that the fat from my stomach that was used to create my new boobs does break down in your boobs, so fat grafting can be done to ensure boobs are at their full potential 🙂 .
After this, I plan to go see a tattoo artist name Vinnie who specializes in nipple and areola 3D tattoos. He will be my final stage and the completion of my reconstruction. It may not be until 2018, but sooner than later my breasts will be complete.
What are some challenges you faced during the reconstruction process?
The expander process can I say..SUCKED!! I didn’t have a problem going every week to get filled. My fill days were never painful, but my chest was what my then 4-year-old said was “rock salad” (solid) and he was right. I’m not a back sleeper, so sleeping on my back was super difficult to get used to, but I did! The neck pillow that I received from the hospital was a lifesaver in and out of the hospital. I had to sleep on the recliner too, which my husband and neighbor brought upstairs for me.
Unexpectedly on Sunday April 9, 2017, my right expander popped overnight. I was devastated. I was so close to my surgery date and was worried I was going to have to reschedule. Fortunately, I spoke to Dr. Carlisle that Sunday and on Tuesday they had me scheduled for surgery to replace both expanders. I was still good to go for surgery in May! YAY!
Did you find anything surprising or unexpected about the reconstruction process?
One thing that surprised me were the different options available for breast reconstruction. I went in there thinking I would get implants that needed to be replaced every 10 years. I was wrong. My doctor told me about DEIP Flap Reconstruction where they basically take the fat from your stomach and transfer it to your chest. These were more natural than implants and would allow my breasts to shrink and grow with my body.
A surprising thing for me was that after my DEIP Flap Reconstruction, my chest still had no feeling from the first surgery so I was not in much pain in my chest. My stomach on the other hand was TIGHT. I was super happy with the outcome of my stomach. I no longer had the baby pouch which was awesome, but I was hunched over for a few weeks and couldn’t stretch very far either. I was off work for 9 weeks compared to 5 weeks after the first surgery.
What was the hardest part for you?
The hardest part of the process was not being able to play the role of Mom, like I normally do. It was hard having people wait on me. My husband played the role of Mom and Dad. He did so amazing, but it was still hard to deal with. I wanted to hug and squeeze them, but instead they hugged my legs and that was tough. I wanted to do stuff with them, but for those first 3-4 weeks, I couldn’t do much.
Another hard part was looking at my chest for the first time. I was scared of what I would see, and that fear in the not knowing made me feel sick. But I was actually pleasantly surprised when I looked. I still had boobs! They weren’t big, but I wasn’t completely flat either. I knew at this point things were going to be okay.
What have you learned from this experience?
I have learned from this experience that I have on amazing support system. My family, my friends, and my community stepped up and helped out when we were in need. I also learned that I am stronger than what I give myself credit for. I went through 3 surgeries and every one of them was painful, but I conquered.
The most important thing I learned from my experience is that God is GOOD, ALL THE TIME! He has a plan for all of us, and although we may not understand it during the hard times, he’s there beside us every single step of the way and his plan is truly the greatest. I am truly blessed by God’s grace.
Are you happy with your results?
I am so happy with my results. My boobs look real. My stomach is flat. And most importantly, my risk for breast cancer has gone down over 90 percent.
Do you have a piece of advice for someone just starting this journey?
One piece of advice I can give to women who are going through the same thing that I went through is that: You CAN do it! The process might be long, there might be bumps along the way, it’s okay to cry, it’s okay to ask for help, but you CAN do it! You are stronger than you think and even if your body looks different after surgery and you have scars that are visible or even if they’re not visible, YOU are STILL BEAUTIFUL! Those scars tell a story. I love this quote “Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.”
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It was definitely physically hard for me. I got expanders put in two months after chemo, and my body was still recovering from that. I thought the drainage tubes were awful. I had to have them in for almost three weeks, and they were painful and made sleeping impossible. I would say the first month after getting the expanders in was the hardest for me
The hardest part of the process was not being able to play the role of Mom, like I normally do. It was hard having people wait on me. My husband played the role of Mom and Dad. He did so amazing, but it was still hard to deal with. I wanted to hug and squeeze them, but instead they hugged my legs and that was tough. I wanted to do stuff with them, but for those first 3-4 weeks, I couldn’t do much.
Advocating for myself. I felt my team of doctors didn’t always communicate among themselves, so making sure we all had the same goal was an added challenge.
The hardest part for me is the loss of the pleasure they provided in my intimate relationship with my husband. I know that he received pleasure from them as well, and it was challenging to have that taken away from us as a couple. However, my husband was and continues to be an incredible partner throughout my cancer journey and its aftermath. Ultimately, this experience has brought us even closer together, and we continue to have a very satisfying physical relationship. (And, it is worth noting, reconstruction wouldn’t have restored sensation.)
