My Story in 10 Lessons
Updated: Sep 30, 2020
*This story was originally written for Crowns of Courage an Art Prize 2017 installation. This was the first time I put myself out there. To be in the public eye and to share my story with the world. It is a very vulnerable and humble place.
Every day is a new day. Some days I can feel the weight of my diagnosis faintly like a helium balloon hovering above my head. Other days it hangs like a 100 pound weight around my neck. This was the first time I put into words how my new normal affected me and what I am going to do about it:
Where do you begin when you are trying to tell the story of the beginning to the end? Does knowing that my life will be shorter than most make me lucky? Now I'm deemed courageous because I don’t cry every day and I have a positive outlook on life. Well, I choose joy. I decided a long time ago before my diagnosis, that I would fight to choose JOY. I think I have always had a touch of depression and anxiety stemming mostly from my weight. I used to pray so hard to find the willpower to be thin, to be happy and to choose joy where I am. For the life of me I could not figure out why it was so hard. Why was I so unsettled? Then the huge bomb was dropped on me; I have stage 4 breast cancer. Now I am fighting to survive. I am fighting to live to see my children grow up. I regularly make deals with God to see them graduate, even though I know that is not how it works. Now I don’t remember why it was so hard to choose joy before my diagnosis. Why did I care so much what my body looked like? I was strong and capable. I was living life, doing what I loved and spending time with those I loved. I am still strong and capable; it just looks a bit different now.
I am a caretaker. It is in my blood to help those in need. I remember in August 2016 being in the hospital with my dad. I was having some chest pain in my right breast but thought it was anxiety and stress related. My dad was in the hospital right as my husband and I were to be leaving for a vacation to New York City, a trip for the big 4-0. Our first long distance vacation, airplane and all for more than two nights without our children in 12 years. Looking back now I am so happy that we had that time before D day or should I say C day. I remember looking in the mirror in our hotel room and one nipple looking off as if it was being retracted but I thought I was being crazy. I had just turned 40 too young for breast cancer. That intuition is still there. Is it mothers’ intuition? Women’s intuition? It's hard to say, but I knew something was not quite right and I did not want to face it. We saw many Broadway shows while in New York; it is one of my favorite things to do. Finding Neverland had a huge impact on me during that trip. It should have been all about Hamilton, which is why we were there in the first place and believe me that is one amazing show. However, I felt very connected with the female lead in Finding Neverland and had a niggle in my head that my Neverland was coming. I never told anyone that. How morbid to watch a show in New York and think about the end of your life. Although, going up to heaven in a giant glitter ball would be pretty amazing.
Along with the pain in my breast, I was also experiencing some back pain behind my right shoulder. I even broke down and went to a chiropractor to try and figure out what was causing my pain. I contributed it to my scoliosis and being overweight. I rationalized a lot of my issues away because I was overweight. My story's first lesson is to follow your intuition and do not wait. To be confident in yourself when you feel something is wrong and to talk to your doctor.
I had my annual appointment with my doctor at the end of September. Do I wish I would have called in August? Yes. Do I think my outcome would have been different? No. I can’t think like that. That would drive me crazy and steal the joy that I am trying so hard to hold on to. Being 40 I get to have my first mammogram and since I have concerns the doctor also orders an ultrasound. Lesson two, if you have concerns and the doctor orders an ultrasound, bring your husband or a loved one as things might not go as planned and you may need support. October 13, 2016 will be a day forever etched in my mind.
Ironically, this is national metastatic breast cancer day. Huh, at the time I did not realize what a crazy coincidence I had on my hands. After I have my mammogram, I go into the ultrasound room. The tech tells me that the radiologist will be in soon to do my biopsy. My heart falls to my feet. I was so confused. I explain that I just needed an ultrasound and she seems so perplexed, “You felt a lump, right?” “Well, yes,” I try to reason with her, “But I have dense breasts, my doctor told me not to worry. I am here for an ultrasound.” I am living in a nightmare. I think she feels bad, perhaps that it has been sprung on me so wickedly. The radiologist comes in and tells me that I have a very angry lump in my breast and he is not letting me leave without a biopsy. So I do it, I lie there crying quietly, no that sounds too pretty, I wish I was stoic and bad ass, but no I lie there ugly crying my eyes out, alone, realizing that I had cancer and could die.
Fast forward to Breast Cancer Orientation 101. You have invasive ductal carcinoma of the right breast stage 2B. You can be CURED. Okay, I breathe a bit easier. I can do this. I can be a fighter. I will buy the shit out of pink and rock the ribbon and kill cancer. Only one more test, a PET scan, just to make sure it has not spread. Ding, ding, ding, intuition coming into play. I knew the PET would be bad. That spot in my back that hurt. It must be cancer. Of course, I tell myself to stop being negative. It can’t be. It is going to be okay. Choose joy….breathe. Faith not Fear. Fear does not get you anywhere just sucks up the space in your heart for the faith.
But my story took me to a different place. I was shot right out of the pink ribbon movement into a place where no one wants to be, stage 4, TERMINAL. There is no stage 5. I can remember sitting in the oncologist office looking at the piece of paper as she puts a line through the word CURE. I felt like that line was drawn across my heart. Now I hear words like palliative, which before this was only attached to my frame of reference as a word used for hospice, gulp. Ironically, she tells me that stage 4 breast cancer can be managed like a chronic condition such as diabetes. Why is this ironic? Well, one of my colleagues just passed away in September from colon cancer. She fought bravely for just over a year. She was more than my colleague. She was my professor in graduate school, she was my mentor and friend. I love her and miss her every day. She was also told it was a chronic condition like diabetes. So my perception of this being compared to diabetes as a good thing is a bit skewed. So now I get to join a new club. Metastatic breast cancer (MBC), for which there is NO cure. I will never be a survivor. I will never ring a bell to signify that I have finished chemo. Did you know that they do that? When you finish treatment you get to ring a bell, some facilities give out roses. It does feel like a punch to the gut knowing that will never be you. But I choose Joy.
Lesson three, 30% of breast cancer survivors will eventually become stage 4. I share not to scare but to make sure those considered in remission or a survivor are vigilant for signs if it has returned. I get the distinct pleasure of beginning in the 6-10% that are stage 4 from the beginning, this is called De Novo. I don’t have to wait for the other shoe to drop, I just get to start this journey knowing exactly what I am staring at. There is some peace in that. I will punch cancer in the face, joyfully. Well mostly joyfully, there is a learning curve when living with a terminal illness.
I have had the whole gamut of emotions. It can mess with your head and play games with you. It is like walking a tightrope on one side you want to hold your children, family and friends so close. You want to stare at them to memorize what they look like and you want to stuff them with amazing memories. But on the other side, which is my negative side, keeping it real here, on the other side of the rope; I think, don’t do too much. You don’t want them to miss you too much or they might not be able to survive without you. Be more distant that will make the end easier, right? It is a blessing and a curse to know that your life is short. Lesson 4, let the feelings come. Honor them. Accept that is how you are feeling and then let it go. People will tell you to be positive that positive people last longer and have better outcomes. That is a very tall order and can lead to guilt if you feel you are not positive enough. SO I experience it all, the good and the bad. There is no right or wrong when grieving what you thought your life was supposed to be like. When I feel it all, I still try to choose joy. Sometimes it is small lower case joy, but I still choose it.
The story continues. Treatment time, let the fatigue begin. I go to the cancer center every three weeks to receive IV chemo. The chemo makes me feel sick and my hair falls out. I decided to take control of my hair by cutting it short a few days after my diagnosis and then having a friend come to my house to shave it off once it was coming out in clumps; my children got to help. This was another day of crying but I felt good knowing that I decided when my hair was leaving my head versus watching it all fall out in clumps. I have a lot of fun with hats, scarves and a wig. I can’t be sad about hair. I have to find the Joy in my new normal. It was a slow build for not feeling well. I used to work every day after chemo even if only for a few hours now it seems to knock me on my butt for a good week. I have never felt fatigue like this. My legs feel like lead, all my muscles and joints hurt. I have some neuropathy in my fingertips. Making it hard to open some containers and do some things that require small movements. Irony ensues again as I am an occupational therapist and fine motor movement and rehab are my jam. Never thought I would be on the other side of it all. My fingernails are pretty gross to look at and they feel like I have slammed my fingers in a door. Chemo also messes with my stomach feeling like a small alien is living in my intestines. It is a new life when you know where all the restrooms are on your route for work. My mind can be a bit foggy and sometimes my recall is hard. Chemo brain is real. I also teach part time at a university and I wonder if I have the mental stamina to continue. The side effects are debilitating. Sometimes I read about what others on the same chemo regiment are able to do and I get lost in my thoughts wondering why I don’t have as much energy. Why is it getting so much harder to walk a few blocks? Lesson five, this is your unique journey. It will not look like everyone else’s and some things I will be better at and others I will have trouble tolerating. It is okay. I don’t always have to be the warrior, sometimes I am a child that needs to be held. If you are struggling too, don’t compare yourself to others. Do your best and feel confident, that is all that you need to do. Faith not fear.
I enjoy working. Remember, I am a caretaker. That is also my profession, it speaks to my soul. I love to care for others, especially children that are differently abled. I am an occupational therapist working with children and their families, birth to three years of age, in their homes. I love my job and receive great joy helping these families. They help me as much as I help them. The unconditional love of a child is priceless and I am lucky to have found this in my job. My heart lies with helping families navigate those first few scary years when things are so uncertain and not at all what they had planned for their children and family. I encourage them to be advocates and have confidence that they are the master of their child’s future. I teach children to become strong and gain as much independence as they can, all through whatever the family finds meaningful. I reassure them that this is not their fault (guilt is real) and they are a great caregiver. Wow, how God has prepared me for my new story. I now have to be my own advocate and make sure that I am getting the care that I need and deserve. That the professional team listens to me as I know myself the best. I have already had to write a letter to the insurance company to petition to receive a medication that I needed. If you feel that you can’t advocate for yourself or you do not have the time then Lesson six is, find someone to advocate and fight for you.
I have been now on this journey for six months. I have been super blessed by the kindness of my community: family, friends, coworkers, clients, church members, and strangers. The next lesson has been one of the hardest for me. Lesson seven, say yes to help, any kind of help. Being a caretaker sometimes it is hard to say yes to help. I want to be the helper, not the helpee. I struggle with my role being reversed. However, I am amazed at the depth of the love and support I, we, have received. It has strengthened me and given me energy for this journey. Beautiful cards that I keep in a basket to read through when I am struggling. Personal presents of deep significance, gift cards for gas and food. We have even received gifts for experiences. We receive warm food 3 times a week. It is so humbling to have this out pouring of love and support. It has been extremely nice not having to think about food when you don’t feel good. I pray that when I feel better, I can return the favor. I have never brought anyone a meal as I don’t find myself a good cook and I was somewhat self-conscious. Now I see how helpful it is to provide the gift of a hot meal and I want to give back. I hope I can give back. I try to thank everyone for all their love and support. I try to write personal cards but also thank goodness for social media, a quick way to say thank you for something that means so much to my family.
Many people ask how they can help and when will I be done with treatment? Lesson eight, educate and donate. I will NEVER be done with treatment. Right now I will have infusions every three weeks for the REST of MY LIFE. These are targeted therapies so hopefully my quality of life will improve and I will gain some of my energy back. Since this is my new, forever normal I have learned more than I have ever cared to know about stage four breast cancer. The mean age of survival is 3 years. That is a sobering statistic and I have to remind myself Faith not fear on a daily basis. I love to think of a quote from one of my favorite musicals, Rent. In the show they are at a support group and the leader asks the gentleman “How do you feel today?” the attendee says “the best I've felt all year.” The leader states “then why choose fear?” My plan is to beat that stat. One of the medications that I am on has only been approved by the FDA since August 2014. It is helping to prolong life for stage 4 women and men (yes, men can get breast cancer too). That means with new drugs and technology; with medical advances the mean age can grow. I have met some women online that are 5, 10, 20 years out with metastatic breast cancer. They are considered exceptional responders. I can be an overachiever, so my goal is to be an exceptional responder too. Metastatic breast cancer does not get the shout out that the pink ribbon does. Did you know that you can’t die from breast cancer that stays in the breast? Only 2% of breast cancer funding goes to metastatic research. There is a movement now to gain 20-30% of funding towards metastatic research as that is the average amount of women and men diagnosed with an earlier stage of breast cancer progress to stage 4. If you are so moved: learn more about MBC and donate to an organization, such as metavivor.org where 100% of funds goes to research.
Lesson nine, find support. In today’s era of social media finding support is so much easier. I think it is important to find spiritual and emotional support. This can be through face to face therapy or support groups or online groups. I am a part of 3 Facebook groups that are for women with stage four breast cancer. It is a great place to find support, ask for advice and share my fears. We also share articles and drug trials. It provides a sense of community with something that can feel so isolating.
Lesson ten, your life matters. That was a lesson that took me awhile to realize I needed. When I was having insurance issues I almost did not write the letter for the medication. I am stage four. I am dying. Why should they pay for me? This was a very small conversation in my brain that was beginning to take hold and I was not even quite aware that it was occurring. Thank goodness for my online support groups. Kelli Parker, a huge advocate for MBC, posted a Facebook post about her life having value. As I read her post with tear streaming down my face I realized that I had begun to think that I did not matter as much as someone that was healthy. That I was too expensive that it was too much work and drama to keep me here. I should go quietly with a smile on my face. But I read her post. Kelli’s post spoke to my soul. I am sure she has no clue how it saved me. I read it saying, YES, Yes yes! My life has meaning. I have value. I still have a lot to offer and I deserve all the best in medical care as I traverse my stage four diagnosis. I might even go buy myself a new shirt, yes it goes that deep that I did not think I was worthy of anything new.
Where am I now in this journey? I have lots of treatment and I have had numerous scans. That will also be my new normal FOREVER: scan, treat, repeat. My cancer is responding. Praise God. I can drop one medication that is cyotoxic (kills cells indiscriminately; good and bad) and move on to a hormone based one that is going to give me killer hot flashes (uncomfortable but not truly a killer) along with my two targeted therapies. I will continue to pray and live and hope for more time. I want to be a part of my family story for as long as possible. I am blessed. I am just a normal woman with normal goals. There is nothing that I want for. I do not have a bucket list of regrets. I just want time and maybe a miracle. A cure for MBC within my lifetime.
Finally, what can I leave you with? What is the Final lesson? Can you guess? CHOOSE JOY.
Some things that I try to do to help me feel good which helps fill my joy is simple exercise. Such as 20 minutes of walking, when I am able, I don’t beat myself up anymore if I miss a day. Eating healthy, but within the foods I love. Visualization, special bible verses and powerful quotes. Time with family and friends. I love to laugh. To find a new purpose, to leave a legacy. I have a daughter. She could get breast cancer. I do not want this to be her story. I will advocate for stage 4 breast cancer for funding and research. I will take ACTION. In