Look for the Flying Pigs

My mom always had a thing for collecting funny and whimsical objects to use as decorations in her office and our home. One particularly whimsical thing she collected was figurines of flying pigs. She had a habit of using the phrase, “When pigs fly” with some regularity. Recently, I put two of my mother’s flying pig figures out for display in my own home. I hadn’t thought about them in years, but I came across them while cleaning out one of my closets.  

This past weekend, I went shopping for some home décor items at a couple of different stores. At one of my stops, on the very first isle I walked down, there was a flying pig just sitting there on the shelf. I couldn’t believe it! I initially picked it up, but thought to myself I do not need another flying pig right now. I put it back on the shelf and continued my shopping. After a few minutes, I had changed my mind and went back to get the flying pig, only it was no longer there. In fact, it looked as though it was never even there on the shelf to begin with. I thought I was going crazy. There happened to be an employee a few feet away, so I asked her if she had seen the flying pig figure or had any more similar items in the store. She gave me a strange look and said, “Ma’am, to my knowledge we haven’t carried those in over a year.” I was so confused because I literally just saw one sitting on the shelf! A moment after the conversation ended with the store employee, an announcement came over the intercom saying that the store was partnering with the Dana-Farber Cancer Institute and special bags could be purchased in stores soon. I couldn’t believe what was happening. The Dana-Farber Cancer Institute was where my mom went after her first diagnosis with breast cancer.

 I live in Oklahoma, so I typically hear ads for Susan G. Komen, American Cancer Society or Cancer Treatment Centers of America. But Dana Farber, a place in Boston? What are the odds?  As soon as I left the store, I called my dad and just began to cry. I’m sure I worried him quite a bit initially, but I said I had to share what happened with him because he is truly the only person in the world that would understand. I told him the story and he just laughed. We went on to talk about grief. We talked about the fact that I’ll have to have another surgery at some point. And we talked about the fact that I will live the rest of my life under surveillance, which brings me additional fear and anxiety. At the end of the conversation though, he said, “You’ll be okay, just keep looking for those flying pigs.”

Today is the four-year anniversary of my prophylactic double mastectomy, and I promise to always continue looking for those flying pigs.

Thanks for reading!

To the Girl Who Said, Yes.

Today marks three years to the day since my prophylactic double mastectomy. In that time, I have had many opportunities for reflection. So today, with all that I know now, I write this to her. . . to the girl who said yes to a double mastectomy.

 

To the girl preparing for her surgery:

It’s okay to be afraid, especially if this is your first major surgery. It’s okay not to want to talk about it. But I also encourage you to find a really great community of people. Ones that will lift you up and encourage you no matter the circumstances. It’s okay if they don’t have a similar or shared experience with you, sometimes all that is required is empathy. Include your partner, your spouse, family members and close friends in what you are going through. They are struggling too.

To the girl in recovery:

Grace. Give yourself lots of grace. Your body is about to enter a new normal. Healing is not a linear process. There will be highs and lows both mentally and physically as you learn to love your new self. You will have new limitations that you didn’t have before. Your body will have a new look and new scars. Embrace that. Recognize that the body is amazing at healing itself, but you need to give it time and the resources for it to do that well. That means eating right, getting plenty of rest and not overdoing it in the early stages. Don’t be discouraged if it takes you a while. It is a process and every day is a new day. Just take your time and I promise you will get there.

To the girl one year out:

Your chest is now healed, but you have a new scar, this time from a C-section. Your body has been through quite a lot in one year. It’s okay that your chest looks and feels different to you. It’s okay to be frustrated that bras and swimsuits feel different than before. But you are able to move and participate in things that you couldn’t a year ago and that is a huge milestone. There is the occasional movement or sharp pain that is a constant reminder of the decision you made. It’s normal to wonder if you are truly saved from your fate. It’s normal to grieve for those who didn’t get to make the same choices and wonder why they couldn’t be saved.

 To the girl two years out:

Your body is now healed, and your new normal is here to stay. Bras and swimsuits aren’t as a big of deal now that you know what you like and what doesn’t feel comfortable. It’s okay to feel awkward at times because technically you are a “previvor” and never actually diagnosed with cancer. It’s okay not to love your body all of the time, even though you made this life changing decision to avoid cancer and family members and friends weren’t so lucky. It’s okay to be angry about having this weight put on you in the first place. It’s helpful to talk to others about your journey. It’s rewarding to help other women who are struggling with this same decision or who are looking for resources and knowledge.

To the girl three years out:

You continue to pay attention to your body, you don’t take any chances or take anything for granted. You get surveillance done every 6 months because you understand this genetic mutation is forever and while surgery certainly helps lower the risk, it is by no means a cure. You stay up to date on the research and try your best not to get overwhelmed with other risks looming in the background. You pass on your recovery clothes, packing lists and any thing else you can think of to those in need. You get mad as hell when someone new is diagnosed with breast cancer and you feel completely helpless, because although there has been some progress made, there is still so much research needed to save these precious women. You play with your child, you let him wrestle with you and snuggle on your chest. You hold him tight for every moment others can’t and for all the times you can’t hug your own mother because of this terrible disease. You know you will have another surgery in the future to remove the risk of ovarian cancer, the double mastectomy was just one hurdle in the race. You are learning to slow down and appreciate time spent with the people that matter most because that time is precious and something you never get back. You know that having BRCA 1 will never define who you are as a woman, daughter, wife or mother, but it has definitely shaped your journey and you are better for it. You are more determined than ever to leave your mark on this world and make a difference.

 

Sincerely,

What Real Love Looks Like

In honor of Valentine’s Day I thought I would share how cancer, caregivers and loss showed me what real love looks like.

The first time my mother was diagnosed with breast cancer she and I lived in Dallas for several months while she was receiving treatment. My dad stayed behind in Oklahoma, but he would visit us on weekends. She met another woman during that time who had a son around the same age as me, and he and I would play together while our mothers received treatment. We all became fast friends.  Our mothers would often trade off watching us when one needed to rest or just get personal things done without a five year old running around. After my mom and I left Dallas she continued to keep in touch with her new friend. A few months later my mom learned that the woman’s husband had an affair while she was sick and ultimately left her. She was alone, still sick and continuing to take treatments with two young kids. I was too young at the time to really understand the implications of his actions I just remember feeling sad for the kids. Unfortunately, my mom’s friend lost her battle a year or so later. Too this day I still wonder about her kids and if they turned out alright.

I remember my dad saying real men don’t leave their wives when they get sick. There was nothing more sickening to him than a man leaving a woman just because she was sick. But unfortunately the diagnosis of cancer or serious illness does deeply affect relationships both mentally and physically. I was lucky enough to be raised and have seen first-hand what it meant to love someone ‘till death do us part’. It was a great example of what I wanted in my marriage. However, I knew I had a target on my back and the likelihood of having cancer or a major surgery was a real possibility in my future. The thought of meeting someone who couldn’t handle it was my worst nightmare. I remember bringing it up during pre-marriage counseling because I felt like it was the biggest elephant in the room.

 The fact of the matter is being a caregiver for someone with a serious illness isn’t for the faint of heart. It’s hard work, with very little reward, especially when you are dealing with a person who has a terminal illness. You work around the clock making sure the other person is well taken care of without expecting someone to take care of you in return. Because at the end of the day that is the definition of selflessness.

 Luckily, I did find a guy who was man enough to handle my BRCA1 diagnosis and all that comes with it. But there have been reports from women who have had full breast amputation that their partners have left them because they can’t get the intimacy back due to the physical changes of their body. There are also instances where a partner will leave because caring for someone with a serious illness wasn’t what they signed up for when they got married. Don’t get me wrong, not everyone leaves their partner and this goes for both genders. The intent of this post is not just to look down on men.

 The other side to the problem is that I think those who are sick or going through elected preventative surgery forget to ask their partner how this affects them. I remember asking my husband from time to time leading up to the surgery how he was doing. I had the world asking me how I was doing, but again, no one was asking him.

 Because I was so independent I didn’t want my family to be worried about me. I remember dreading the time leading up to telling my father I was BRCA1 positive because I didn’t want him to worry or be scared. After all, it hadn’t been that long since my mother had passed away from cancer and was probably still very fresh in his mind like it was in mine. I struggled telling my husband of barely a year for the fear of him thinking I was broken or worrying that I would get cancer. But the fact of the matter was they were my support system and they were rock stars when the time came for surgery and the weeks after during my recovery.

 I was grateful to be surrounded by my dad and my husband during the week following my surgery. One unforeseen benefit to them supporting me is I believe it also strengthened their relationship. As I said, we had only been married a short time and my dad and husband had never really spent one on one time together since we live in different cities. I feel as though this gave them a chance to bond over a mutual interest (me) and my father saw first-hand how my husband took care of me. I think he felt relieved knowing I would be in good hands. Since that time they have had a much stronger relationship.

 As someone who is going through treatment or surgery don’t be afraid to talk to your support system and ask them how they are doing. As a caregiver, don’t be afraid to talk to your loved one about your feelings and reach out to other caregivers like a support group (online or face to face). No one has to be alone in this journey.

 To all those men and women taking care of your loved ones, you are the real MVP’s. Happy Valentines Day!

Narrowing Down a Surgeon: Part 1

So I know it’s been awhile, but I wanted to pick up with my journey where I left off. To recap from my second to last post, A Time to Tear and Mend: Surgery Options, I talked about doing months of research to determine the type of surgery I wanted. I ultimately decided on the Direct to Implant (DTI) surgery option. I made the decision based on my own body and what I thought was best for me.

The next step would naturally be to locate the right surgeon. Despite growing up in Oklahoma and this area being my most comfortable surroundings, I always knew I would have the procedure done out of state. That is not to say that there aren’t quality breast surgeons in Oklahoma that perform an “implant” type of surgery, but it was important to me to find someone who had experience doing the Direct to Implant surgery. For me, it was never about convenience, it was always about getting the best care possible. An important note here is that you will technically have two surgeons in any surgery option. You will have a breast surgeon who will remove the breast tissue and a plastic surgeon who will do the reconstruction. Most of the research and medical experts I talked to suggested focusing on choosing the plastic surgeon first and then vetting the breast surgeon they worked with primarily. Most plastic surgeons work exclusively with a particular breast surgeon; however, some don’t so it’s important to discuss that with any plastic surgeon you are considering.

Things I looked for while searching for in a plastic surgeon:

1. Do they actually perform the surgery? The plastic surgeon’s website is the greatest source of information. When I was researching my options, I would read the surgeon’s profile very carefully. Not all plastic surgeons are created equal. If they perform Direct to Implant, they will say so. Otherwise, they might be referring to expanders which is when they put an implant in after giving you a balloon type filling first. Again, read carefully.

2. Logistics? I was willing to travel but logistics such as flying vs. driving and where to stay after surgery were all still important things to consider.

3. Do they have good “after” pictures? Most of the websites I visited had the option to look at “before and after” pictures of patients with some information about their medical situation. Let me tell you, looking at pictures of other women’s breasts was not something I ever thought I would be doing. I remember being so uncomfortable going through pictures and rating whether or not they looked good to me and reading their stories. Eventually, it became easier and felt like I was scrolling through Instagram or Pinterest.

To contact a plastic surgeon’s office I literally just filled out the “Contact Us” section of the website, and someone usually got back to me within 24–48 hours. You will want to talk to someone on the phone, tell them a little bit of your medical history as well as the type of surgery you are interested in. They will then want to set up a consultation. Most places that deal with out of state patients have the option of doing a Skype consultation before anything is scheduled to make sure you are a candidate. During my process, I did not have a Skype consultation with any of the surgeon’s I was considering. I was just more comfortable meeting with them in person. It gave me a chance to see them face to face, see their facilities and for them to see me “in the flesh” so to speak. I cannot reiterate this enough that you are hiring them. Choose the surgeon that you have the most confidence in. To set up the consultation they typically will send you an Online Patient Portal link to upload documents and pictures. This is why I always remind everyone how essential it is to keep good records. Also, these are the same things you will want to bring a copy of with you when you go there in person.

Things they will need from you:

• Copy of your insurance card.

• Copy of your driver’s license.

• Copy of your official genetics report.

• Pictures of yourself. Yep, you read correctly. They will provide very specific directions on what they are looking for in terms of the number of pictures and angles.

• Some will ask for your medical history, or you will fill it out on their own form.

I’ve had a lot of people ask me what kind of questions I prepared ahead of time when going to visit these plastic surgeons. I made a list of questions that I felt like were right for me. Believe me you will have more questions while you are there and more questions after you leave their office. Which is great! It’s important for you to ask them questions.

Here were the main questions I had for the places I considered:

1. Tell me about the Direct to Implant procedure.

2. Am I candidate for the surgery?

3. What is the recovery process like?

4. What are the risks and limitations?

5. How long does the surgery take?

6. How long will I have to stay in town while I recover?

7. Is it better to drive or fly home?

8. Have past patients reported any post mastectomy pain?

9. How are follow-ups done and how often are they needed?

10. How many patients, like myself, who have never been diagnosed with cancer, were later diagnosed after prophylactic surgery?

11. Are there any past patients you know of that would be willing to share their experiences?

I recommend bringing a notebook to write down notes. You will have a lot of information thrown at you and you won’t be able to remember everything they tell you. Another super important tip I can give you is don’t leave the office without grabbing a business card of everyone you came into contact with. This will be important for follow up questions, and it’s always helpful having the direct phone number and email.

I would also like to make it clear that although I had the Direct to Implant surgery in mind, I still had to be determined a candidate by both the breast surgeon and the plastic surgeon. It is important to go into this situation knowing that you may not be a candidate for your first option when it comes to surgery. Be prepared to pivot or go with a Plan B option. Because sometimes that’s life and everyone’s situation depends on their own body and medical history.

So, I made my appointments and set out on my journey! Coming up, I will go into depth about the two places I visited and how I ended up making my decision!

Thanks for reading!