I was 39 and had just seen my gynecologist for my annual appointment a month prior, where I received an order to have my first mammogram later in the spring. My family and I were in the middle of a move from Pennsylvania to Texas. We had a temporary apartment in Dallas while our old house was on the market in Pennsylvania (with our furniture in it), and I was getting our daughters set up in their new schools. We had finally closed on our new home in mid-January and got involved with painting projects and repairs. Then, we received a call that the radiators had busted in our old house in Pennsylvania (the house that was still for sale). Needless to say, we were juggling quite a bit!
I met the movers in Pennsylvania to arrange for our furniture to be moved to Texas. It was during the 4-day trip to meet the movers and get everything out of our old house that I found a painful, hard lump in my left breast. I felt it one evening as I was showering, and it kept me up all night. Was it a blocked duct? Was it stress? Seriously, I didn’t have time for anything else! I called my Ob/Gyn the next morning and he got me right in. With only so much that could be detected in the office, my doctor wrote orders to see a surgical oncologist and proceed with a mammogram. WHAT?!?! Isn’t this jumping the gun a bit with an “oncologist”?
Because I was in Pennsylvania and it was a Friday, I had to quickly find doctors and get orders in Texas the following Monday. I saw a local gynecologist that said it probably wasn’t cancer because “cancer doesn’t hurt”. Hmm. I then called a cancer center in Dallas and was going to have to wait several weeks to get an appointment. So, I spoke with a physician friend in Lubbock who referred me to a colleague of his in Fort Worth, Dr. Strock, a plastic surgeon. Dr. Strock met me on his lunch break a couple of days later. I asked, what would he do if it were his family member? He got me right in with Dr. Chow, a surgical oncologist who sent me to Solis Mammography. They detected something and I quickly had an ultrasound and then biopsy. Great. I was happy to have some answers, and was hopeful it was nothing.
At a late appointment one evening, Dr. Chow met with me and my husband, Michael. She explained that I indeed had breast cancer.
I was diagnosed with HER2+, an aggressive form of breast cancer. I thought, “Okay, so it obviously was detected early… they can just remove the lump and we can go on with life. I had no family history of breast cancer and no BRCA genetic mutations.” Not exactly…
The doctor showed us the images and explained it was a bit more involved, and chemotherapy was necessary right away. A swirl of emotions began consuming me and I entered a heavy fog. On the way home, I received a text from my daughter (before she knew I had cancer) that read, “Life is like a glow stick. Sometimes you have to break to shine.”
That evening, Michael and I sat the girls down and told them I was just diagnosed with cancer. I will never forget sitting at the dinner table with my family trying to eat our Whataburger. There were tears, hugs, questions, and more tears. Then, Michael got on the phone right away to let family and friends know.
After meeting with Dr. Ganesa, my medical oncologist, the plan was to have 6 treatments every 3 weeks of 4 chemo drugs: Herceptin, Perjeta, Taxotere, and Carboplatin. After the 6 treatments of chemo, I would have a mastectomy, then finish chemo for the rest of the year with Herceptin. Prior to chemo, I had to have a brain scan, echocardiogram, chest x-ray, CT scan, bone scan, and many blood tests to get a baseline.
I began chemo on Feb 27, 2015.
From detection to the start of chemo was less than a month. I didn’t have time to get a second opinion. It was likely I was going to get through this, so that is what I put my mind to. I was young, a mother, a wife, a daughter, an Occupational Therapist, and had so much more to do in this life.
As I met other women, I quickly learned that there are many kinds of breast cancer with many different treatments: HR-negative, triple negative, hormone-dependent, etc. Some only need surgery to treat, some require surgery and radiation, some need 5 years of medications. I trusted my doctors and their advice. They are the best! And, having a great team alleviates the stress of questioning everything. Plus, I chose not to read obsessively on the internet.
During one of my chemo treatments, my nurse introduced me to Beth, a fellow patient who had the same diagnosis and same physicians as me. Beth was about 6 months ahead of me in treatment, and quickly became a HUGE support. We coordinated our chemo treatments and, believe it or not, I actually looked forward to chemo! As Survivor Sisters, we got each other through a lot. We are still dear friends to this day.
The Cancer Center was great. They provided a lot of support to supplement the doctors’ treatments. I met with a massage therapist who was an angel. Along with massage, the Center provided Yoga classes, counseling, acupuncture, nutritionists, and “Look Good Feel Better” luncheons with free make-up and beauty advice. I wasn’t expecting to learn how to draw on eyebrows! They even provided a free wig through the American Cancer Society. I remember having several funky haircuts prior to losing my hair. I typically used hats and scarves to cover my head. The wigs were itchy, but I did have fun with some Halloween wigs. I wanted to look as fabulous as possible, even though I was feeling sick. For some reason, that made me feel better and less like a hot mess. I also remember feeling fatigue and nausea and having to rest a lot. But, I tried to get out and walk as often as possible. Exercising helped me feel happier and gave me a little bit more energy.
Honestly, managing daily stuff was a challenge. If you are diagnosed with cancer, my advice is to make all of this as easy on yourself as possible. Have a calendar for appointments, doctor appointments, and keep a list of questions. Have a dry cleaning pick-up and delivery service. Use community support like Cleaning for a Reason, which provides four cleanings during your cancer treatments. Also, let go of the pride and actually ask for help. I was overwhelmed, but I had some great family members and friends that helped with meals, unpacking, rides for me, rides for my children, and brought gifts like blankets, books, lotion, mouthwash, soft PJs, and cards. My girls were also so great with making little inspirational notes, giving hugs, and helping out around the house. I had an army praying for me and I cannot say enough about how much I felt that. (Whatever your faith is, lean on that!) My sister-in-law was so thoughtful to send frequent prayers and inspirational quotes. Friends met me for lunch or coffee, which helped me feel “normal”. I really wanted to feel normal and just talk about stuff other than cancer. I didn’t want people to look at me with pity or feel sorry for me… a humbling experience as I was meeting a lot of new people in our new town in a new state.
Some random things I also remember: dealing with losing fingernails due to the chemo drugs, mouth sores, the dulling of my senses, and numbness in my hands. Managing the side effects of chemo was a bit unexpected. I think the doctors don’t warn you about all of that because you are so overwhelmed already. I also remember that my hair began to grow back in after my mastectomy. I realized my legs were in desperate need of a shave as I was recovering from surgery with drains, the inability to shower, and the inability to move my arms. Looking back, I laugh at the irony.
Not only was I struggling with all of this, but I quickly realized that cancer affects everyone around you. I had a husband and children who were still were living their lives. We had school, homework, activities, and their own stuff with which they were dealing. My husband is my rock. He dropped everything at his busy new job to be with me for appointments, chemo, and surgeries. He managed more than his fair share of projects, bills, and daily tasks. My children are angels who did many extra chores, cleaned, and cooked when I couldn’t. They gave me lots of hugs and kept me focused on beating cancer. My mom even moved near us to help take care of me and my family. Friends, family, neighbors, teachers, coaches, and school counselors all helped us through. Having this support system was so special.
I found that the little stuff started to not bother me as much. Your priorities clear up very quickly when you are slammed in the face with the heavy reality of fighting for your life. The drama and little stresses don’t affect you anymore. You don’t have time for things that get in the way of your happiness. You quickly understand how precious life is and how grateful you are for each day. Something I wish I had done is to keep a journal to work through all of these emotions. At first, I felt guilty taking time for myself, but it is necessary to process everything that is happening. It’s a lot to handle and juggle: doctor appointments, tests, medication schedules, recovery, medical bills, and the day-to-day stuff. It all seems like a whirlwind. There were decisions I stressed about like having a single vs double mastectomy, genetic testing, and even where exactly to place my new nipples!
From a PT/OT and rehabilitation standpoint, it is good to understand the varying surgeries like lumpectomy, mastectomy, double mastectomy, and the techniques used as well as to understand the side effects – both physical and mental. Knowing how to manage scar tissue, the healing process after surgery or chemo, the precautions during chemo, drains, fatigue, endurance, Herceptin’s effect on the heart, chemo brain (yes that’s a thing!), swelling in the limbs, the precautions after mastectomy such as not being able to move your arms for many weeks… and so on. Having empathy for the physical as well as the emotional recovery is key.
Cancer affects everyone differently. I wanted to crawl in a hole and not have to see people so I could focus on myself and recovery. I also wasn’t on board the pink tutu-wearing rah-rah train. But indeed, I was part of a parade I never wanted to be in. It took a while for me to come to terms with the fact that this was part of my life now. I have since crawled out of my hole and rejoined society. And, I find it funny that after two years of being in our new house, I finally started meeting some of my neighbors!
Almost 4 years after my diagnosis, I am working to increase my endurance, protect my immune system, eat healthy, and manage the subsequent problems that arise when you have been through chemo. I have to manage the anxiety as my doctors are going over me with a fine-toothed comb. I now see a liver doctor, check my heart often, and take medicine for depression. I have had a tubal ligation, and have had two different skin procedures to remove suspicious pre-cancerous spots (one would think the chemo would have knocked out any other cancer in my body, but it doesn’t work that way). I have struggled with my body image and accepting the new me. I tried to hide my scars at first. Now, it doesn’t bother me so much.
It is the “after” and getting back to normal that has been hard for me. Once I finished chemo and surgeries, my family and friends thought I was back to “normal” and could handle the daily bills, cleaning, decisions, and projects going on around me. I really had a hard time realizing that I was managing depression and anxiety. I remember having several panic attacks and being scared that I couldn’t go on. But…
I am very grateful to be here. I try every day to appreciate life and have gratitude. It takes a conscious effort and daily life sometimes gets in the way. Cancer has made me realize how fragile and precious life is. I have gained some dear friends and connected with people on such a deeper level. I have greater empathy for patients I treat who are going through this or other health issues. I found it helps me to be able to give back. I had so much help in many forms, and now that I’m over the hump of treatment, I want to return the kindness. I have several friends who have since been diagnosed with breast cancer. I talk to them and offer support. I have helped to organize Pink Out volleyball games at the high school. I have such gratitude for my healthcare providers: doctors, nurses, and Beth, my chemo buddy. Beth and I are involved with Komen Fort Worth, and have a team each April for the Walk. It is a special time for us to celebrate, honor those who have lost the fight, and make a difference for the future.
This is my story. I’m going to say “story” because I think “journey” is kind of corny and over-used. To me, this is something really terrible that I had to go through, but it does not define me. I survived.