There is so much change happening, and 2017 has just begun!
The Week Leading Up to Surgery-- One Long Week, Take 2
After 6 weeks of interviewing doctors, researching surgical options, reading everything I could get my hands on, and talking to everyone I could get ahold of, I got the call that my surgery had been scheduled for Friday 5/16/14. It came as a complete shock! Despite the fact that I had lots of time to make my decision-- (I know other women who were rushed into surgery almost immediately)-- it really felt crazy that this was ALREADY going to happen!! Isn't it funny how the mind works?
I now had one week to get everything in order before my double mastectomy. Home, school, group x teaching, Beachbody coaching. Lots to get ready.
It wasn't really a convenient time at school. We were winding down the semester and preparing for final exams and the end of the school year. I would have to get a sub to not only cover my classes but review for my finals and then administer my final exams. I would need to relinquish control, and that was very tough for me. I was very fortunate to have some coworker "angels" who stepped in and helped me sort the process out. I had tremendous support from school administration. I found a great sub who met with me to get exact instructions on every little detail. It was crunch-time to grade the dozens of dance performance videos my Dance & Fitness students had just completed. I needed to have my students' grades updated to the very minute I went into surgery so they and their parents knew just where they stood going into finals. I felt the pressure of getting my Adventure students as much climb time as possible so they would get the best climbing grade before I left. I needed to get all the necessary permissions and paperwork filled out and turned in to the school district. Since I wouldn't be back before the end of the school year I needed to make sure all the loose ends were taken care of. It was a crazy time but with much help I was able to get everything in order. I brought home my grading sheets and my rosters with the hope that I would be strong (and lucid) enough to grade the final exams and turn in the final grades by the deadline at the end of May.
The home part of the preparations was a big deal, too. I wanted to leave the house sparkling clean with laundry done and fridge stocked. That takes time, and I didn't have much. My husband James is my rock, and he was right there with me getting everything in order. There was a stop at Target to get a body pillow, some button-up nighties, and some dark chocolate (let's be real, folks). Safeway for the kitchen supplies. Vitamin Cottage for the organic produce and healthy snacks. Bathrooms got scrubbed, bed sheets and towels washed; even the dogs got a bath. Everything was falling into place.
It's crazy how one week-- 7 days-- can seem to drag on forever. Even though I was so busy getting ready for the big day, I couldn't seem to wrap my brain around the fact that I was having major surgery. I was still shaking the cobwebs out of my brain from the residual anaesthesia from my surgery a few weeks before (to retrieve armpit lymph nodes for biopsy) and had no idea how I'd come out of this next one. Since everyone's double mastectomy is different, I had no idea how long my recovery time would be. I needed to plan for at least a month of me laying low.
I was worried about getting subs for my cycle classes at the local 24-Hour Fitness. I teach at odd times and have had trouble in the past finding subs for just one day here and there. The members who take my classes are so committed and many of them have become my dear friends. I didn't want my hiccup to stop their giddy-up. Fortunately, several people stepped in to cover my classes for 6 weeks (just in case) so I would have lots of time to rest and recover.
My Beachbody coaching was the least of my concerns as I look back. I run my challenge groups through Facebook and so all I had to do to prepare was to let my team and my participants know I would be out for a couple of days but would be back in full force within a week. I am grateful I had the flexibility of taking a break and that I could be 100% with my coaching no matter how slow my recuperation process was. I can't tell you how much of a comfort this was, knowing I had a way to help people and bring in income even though my activity would be restricted for a while.
Among all the hustle and bustle of getting all my ducks in a row, in the back of my mind there was still the big "C" word and the questions that go along with it. Would they get all of it out? What if it's spread? How much pain would I be in? What if it turns out I need cheomotherapy after all? Radiation? How long 'til I would feel 100% again? So much to think about that it made my head hurt. I tried to focus on positive thoughts and enjoy every single moment rather than obsess over things I couldn't control.
It was the strangest thing to go to work at the high school that Thursday, the last day before surgery. I felt as though I was in a fog, or a dream. I tried to keep a smile on my face as I went through the motions of saying goodbye to my students and fellow teachers and friends. It was one of the oddest, most bittersweet days of my life. Here is a video I shot of me that day: https://www.youtube.com/watch?v=-X2c_GPRFhM
Life was about to change in a big way!
Getting Lots of Opinions
Part of what made this whole breast cancer diagnosis tough for me was all the decisions I needed to make under intense emotional pressure. Big decisions. I found that my brain could only process so much at a time and then I just couldn't take any more. All the internet articles, the blog posts, the research material, books-- all the information that is available with just the click of a keyboard key--it was definitely an overload of the senses.
I turned to breast cancer survivors to hear their stories. They were tremendous resources about what to read, where to go for treatment, which doctors are the best, which treatments worked for them, etc. Everybody knows somebody with breast cancer. It's crazy how many people have a friend, sister, mother, daughter, neighbor, co-worker who is battling it. I was fortunate to connect with some wonderful women whose candor and willingness to share their struggles and treatment choices really helped me to wade through all the information.
There were two women I reached out to immediately when I got my diagnosis. The first was a co-worker who was battling stage 4 breast cancer who had a similar initial diagnosis to mine. I knew she'd have some wisdom and advice and she didn't disappoint! Among all her suggestions she recommended I start taking Modified Citrus Pectin once a day for its anti-cancer properties. She also recommended I eat a mixture of cottage cheese and flaxseed oil once a day as a healthy snack. (More on dietary approaches to cancer in an upcoming blog). We talked about different docs in the area and the pros and cons to different surgical procedures. This acquaintance is now my friend and she continues to be a great source of strength and inspiration to this day.
The second person I reached out to I have never met in person. She and I connected through Beachbody Coaching-- I was randomly assigned to be her Coach when she purchased a BB workout program. We had become friends on Facebook and had shared some fun posting with others in my online fitness challenge group. I was stunned to learn she was diagnosed with breast cancer some time back and had watched her treatment progress and learned so much before I even knew I would be facing the same disease. I messaged her almost immediately after I got my diagnosis and she was so kind and supportive, sharing with me more about her own journey. Her cancer was different than mine and her treatment much different than what I would be facing, but she too was and continues to be a tremendous resource and inspiration.
Other friends connected me with people in their lives who were survivors. A student's mom reached out to me. Another teacher's mom was a few months ahead of me in the fight. A friend gave me the name and number of her friend who is a survivor and nurse. A high school friend connected me with his wife's best friend. A cousin introduced me to his co-worker's wife. And it goes on and on. At a time when my world was turned upside down I was the recipient of so much kindness and understanding from total strangers and friends alike.
I'm not going to dwell on the negative, but I will say that it is very interesting who stepped up to provide comfort and who didn't. Perhaps I will write about that on another day.
During the course of all this networking with BC (breast cancer) survivors I was also meeting with physicians to assemble a BC treatment team. I never knew that it took a small army to make a little lump go away and to keep it away. It's important to note that Denver, CO is a great place to have BC as there are numerous talented physicians and surgeons to choose from. Again, more choices.
I am insured through Kaiser so was assigned a random surgeon, plastic surgeon, and radiologist right away. I met with them and liked them, but took my time to get other opinions and to research the options they presented. I looked at participating outside of the Kaiser network in a clinical trial of a new type of radiation treatment-- IORT, or Intra Operative Radiation Therapy-- defined by Wikipedia as "applying therapeutic levels of radiation to a target area, such as a cancer tumor, while the area is exposed during surgery." The site goes on to say, "The rationale for IORT is to deliver a high dose of radiation precisely to the targeted area with minimal exposure of surrounding tissues which are displaced or shielded during the IORT." I met with the surgeon and was impressed with her knowledge of this new procedure and really felt connected to her through her warm bedside manner. I was super excited that although I was a tough case due to the location of my tumor and other factors, I would be welcomed into the study! Just one big challenge was in the way-- since it was out of network I needed to petition Kaiser to pay for the treatment or else pay for it out of pocket.
I really felt that this was the way to go and so we got the ball rolling with the petition, but as time went by something just didn't feel right about it. The more I thought and talked about it the more uneasy I felt about going through with the IORT. Whether or not Kaiser paid for it wasn't the issue-- I just had this gut feeling that it wasn't the path I should take. What a terrifying time for me-- everyone around me was so excited that I would be part of this clinical trial with a new procedure that was so much less invasive than any other treatment available, and I just felt so alone in the way my heart was leading me. I had been in denial all along, but from the very moment I heard the nurse say "cancer" on the phone I knew I would end up getting a double mastectomy. We had already invested quite a bit of time and money towards that end. How could I tell my family I had made up my mind to go in an entirely different direction?
While we were waiting to hear back from Kaiser I continued to meet with other docs. I figured if I found a doc who really inspired me and who was highly skilled, I would have the courage to go for the mastectomies. One particular general surgeon's name kept coming up over the course of my investigation. Doctors, nurses, and patients alike raved about her skills and bedside manner. And she was another "she!" Nothing against male docs, but sitting down with her and talking, opening up about my fears and questions, I felt understood and heard. She clearly explained how she would take care of the cancer while helping me to achieve the most pleasing aesthetic outcome (which is something that's important to me). It was easy after that visit to take a stand and change my mind about my treatment plan. A skin-sparing double mastectomy it would be!!
My plastic surgeon (ps) came highly recommended, too, and luckily was within the Kaiser network as well! Score! I met with him about reconstruction options and my hopes were immediately dashed that I could have reconstruction the same day as the mastectomy. I was devastated, as I'm a busy PE teacher, mom, Group X instructor, and Beachbody Coach. I use my body all the time and had NO TIME for any down time!!! My ps explained that in my case (due to the location of the tumor and other factors) I would need extended reconstruction over the course of about a year. A year?!? At the time of the initial surgery, tissue expanders would be placed inside my chest under the pectoral muscles and remaining skin and would be slowly filled over time to stretch my chest into new "chest bumps." Every few weeks or so over the summer we would expand my chest back to my old size (or bigger) in preparation for the exchange surgery where the expanders would be taken out and silicone breast implants would be put in. Another surgery or two would provide me with nipples if I opted for that (more on that in an upcoming blog post). Lots more time and work than I expected...
I should tell you that as we moved forward with my final decision for a more extensive surgical approach, Kaiser wrote me a nice letter telling me I was DENIED coverage for the IORT I had petitioned for. It just sealed the deal for me-- I had made the right choice!
***I really feel like I need to make clear that I could never judge another woman's choice for medical treatment for her breast cancer. So many factors play into the treatment plan and each woman's body is so unique. I chose a very invasive and costly surgical procedure to deal with a tiny tumor, and I realize that many others would make a different decision. I understand that by essentially cutting off my breasts I am not guaranteed a longer life or a life free of cancer. I also understand that there are no promises of any sort of outcome when it comes to breast cancer of any size or type. All I know is that I had to act with integrity in making my decision. I couldn't let anyone else sway me one way or the other. It needed to come from me.
7/15/15 Note: Check out this site with inspiring quotes about breast cancer from celebrities who battled the disease: http://www.healthline.com/health/breast-cancer/quotes
One Long Week, Take 1
Once I got the news about my breast cancer I wanted to hurry up and speak with a doctor about what to do next. Maybe there was some kind of mistake. Maybe it was someone else's cancer and they called me accidentally. Maybe it was all just a bad dream...
Because I am insured through Kaiser, I was given my appointment date and time when I first received the diagnosis from the radiology nurse. My MRI would happen immediately the next day but my appointment with the general surgeon would have to wait a week. A week!?!
At least he MRI happened right away. It was an interesting experience-- my first, but probably not my last. This MRI was the first step in determining the exact location of my cancer and whether it had spread. Lying on that table face down for an hour wasn't too bad for me. Having to lie perfectly still wasn't as bad as I thought, either. I've never had trouble sleeping but that first night after my diagnosis I don't think I slept a wink. So when it came time for me to lie perfectly still for the MRI I think I fell fast asleep. I really tried to focus on positive, happy thoughts. It seemed to go by quickly although I was there for a couple of hours. I don't know what I expected, but I wasn't given any diagnostic information at the MRI appointment. My general surgeon would go over everything with me at my appointment a week later.
{One thing I would recommend to other women going in for a breast MRI is to not wear any makeup. Although I don't wear much, lying face down with my face smushed into the hard pillow for an hour smeared my mascara down my face and was a pain to clean up in the little changing room. No big deal-- just an FYI.}
Oh, the crazy mind games that I played as I waited that week for my first appointment. Was the cancer big or small? Was it fast- or slow-growing? What stage was I? Would I need surgery? Chemotherapy? Radiation? Was I going to die? All this was running through my mind constantly as I still had to function "normally" at work and home. Very stressful.
My appointment finally arrived and my husband and I met with the first surgeon, Dr. D. He was very kind and patient with our questions and concerns. He spelled out my cancer diagnosis and what we knew so far-- Invasive Ductal Carcinoma-- and drew diagrams to explain what was happening inside my body. The MRI showed no other "hot spots" in either of my breasts, which was wonderful news. There was no way of knowing whether the cancer had spread at that point, but Dr. D was confident that it was limited to my right breast only and hadn't spread to other parts of my body. Chemo was most likely not necessary. How badly I wanted to believe him!
We discussed all of the different options I had for dealing with my cancer. In the week between my diagnosis and appointment I had spent countless hours searching the internet for information on breast cancer and treatments. I hadn't realized that electing to have a lumpectomy required that I get radiation treatment and a daily dose of Tamoxifen for five years. Then there were the options of a mastectomy of my right breast only, or the bilateral/double mastectomy of both breasts. Both required major surgery with recovery time, reconstruction, and time off work. I learned that people with larger tumors than mine have elected the lumpectomy, while others with Stage 0 cancers went for the double mastectomy option. I had no idea that I would have so much personal choice in deciding my treatment plan and surgical plan. In some ways this was liberating and in others it was paralyzing. What was best for me in my situation? What would give me the best chance for long-term survival? What option would preserve my lifestyle and allow me to do all the things I love to do? And yes, it definitely occurred to me-- how can I preserve the aesthetic that is important to me?
The Diagnosis
I never imagined that the small lump in my right breast would actually turn out to be cancer. With no family history, no risk factors, and a very healthy lifestyle, I guess I figured I was in the clear. Looking back I see how arrogant I was...
I discovered the lump while lying in bed watching a movie with my husband. I felt a little BB-sized lump close to the surface near the nipple of my right breast. I asked James to pause the movie and feel the lump. We both figured it was harmless and would work itself out.
I mentioned the lump to my doctor a few months later at my annual appointment. She could hardly feel it but decided it would be best to send me for a mammogram and ultrasound, just to make sure. I ended up having both the mammogram and ultrasound, but since the lump was so small they couldn't tell me much about it. We decided to wait a few months and recheck it.
December was the month I was supposed to go back. As a teacher and mother, December is one of the busiest times of the year. I got caught up in the hype of the season-- decorating, baking, shopping, and of course, administering final exams to my high school students. I completely forgot about my lump.
It wasn't until the beginning of March that I ended up going in again for an ultrasound. By this time the lump had grown from the size of a BB to the size of a small pea. Two different doctors checked out my lump via ultrasound and recommended we do a core biopsy to rule out cancer. I almost didn't do it-- I was sure I didn't have cancer. I really considered waiting another 3-6 months to get checked again. I'm so glad I changed my mind and went ahead with the biopsy. The doctor ended up taking three core samples and put a little metal marker in my breast next to the lump so it could be identified in future screenings. I had one last mammogram as well to map the lump.
Luckily, these tests happened during my Spring Break, so I was busy with household projects and family time. I didn't have time to dwell on the biopsy; I was having too much fun! Thursday, March 27th rolled around and I was sleeping in when I got the call at about 8am. The nurse on the other line was so kind as she told me I have cancer. What?!? I was completely speechless. She asked me to find some paper and a pen so I could write down her instructions and at that moment all I could think of was, "What is a pen?" It's fascinating how the mind works (or doesn't work) in moments of crisis. She told me I have Invasive Ductal Carcinoma and that I would need surgery and possible chemotherapy and Tamoxifen. So much information to take in...
Thus began the process of notifying family and close friends. Everyone I shared the news with was just as misinformed about breast cancer as I was-- we all believed it couldn't happen to someone like me who is fit, active, never sick, non-smoker, non-drinker, clean eater, etc. The first week was just a blur... yet life goes on despite the diagnosis. Work, family, laundry, bills-- all needed my attention, yet my mind was elsewhere as the whole idea that I have cancer was such a surprise.