10 Lessons I Learned Early On in My Journey With Breast Cancer
Breast cancer. Who – me? Stage 2 invasive ductal carcinoma. That certainly wasn’t in my life plan! I was diagnosed in January 2016, and these are some of the valuable lessons I learned early on in my journey.
1. There is a difference between a crisis and an emergency.
It was an emotional crisis to hear my diagnosis, but I learned it was not an emergency. In the midst of the initial shock, tears and sleepless nights, there was time for me to come up for air. A good friend recommended “Dr. Susan Love’s Breast Book,” and I devoured it. It was a great crash course in breast cancer. It took me three weeks to finalize a treatment plan, during which I had further testing, visited the surgeon and oncologist, and sought a second oncologist’s opinion.
2. Trust my gut.
My brother gave me some wise advice the first week I was diagnosed. He said, “Sis, sooner or later you’ll be faced with decisions only you can make. You need to trust your gut.”
My oncologist recommended four months of chemotherapy to shrink the tumor before surgery. He also mentioned that I qualified for a clinical trial that would use a pill to cut off the estrogen supply. It involved a second breast biopsy besides my initial one, and a third biopsy after the first month of treatment, so he didn’t think many women would want to participate. Mark and I were at the check-out desk scheduling the appointment for my chemo port placement when I asked him to go back and see if they would give us the clinical trial papers so I could look them over. I spent the weekend stewing over chemotherapy side effects versus the possible risks of the clinical trial. Early Monday morning I read through the clinical trial again and my gut clearly told me, “It’s the right thing to do.” My cancer is 100 percent estrogen receptor positive and slow growing. Since chemotherapy works to destroy cells with rapid growth, my gut told me that cutting off the estrogen supply trumped chemo. It was a relief to cancel the port placement appointment.
3. There is no turning back.
That is the thing about cancer. You have to make treatment decisions, and you will never know the outcome of the options you didn’t choose. Even if you change course midstream, you can’t necessarily go back and start over. I remember crying for two days before I started my pills. I wanted to stay “normal” for a while longer. Then I realized that normal had already changed, and what I really wanted was to be post-treatment. There was no way to get to post-treatment unless I let go of being pre-treatment.
4. Get organized.
I was quickly accumulating pamphlets and reports from my office visits and tests. I knew it was time to get organized. We bought four nesting bins: medical records, billing information, cards and letters, and miscellaneous handouts. I take a small notebook to every appointment with a list of questions and write down the answers on the spot. I also keep a record of the date of every office visit and procedure. I vowed that cancer was not going to take over our kitchen table. Instead, I have it neatly stacked in the corner.
5. Be willing to accept help from unexpected places, and don’t expect help from expected places.
Mark and I have repeated this advice to each other more than any other we have received so far. It came from a physician friend two days after my diagnosis. I am a private person, but we soon realized that people can’t reach out if they don’t know anything is wrong. To balance that, I also learned it is OK to only share when you are ready. If people ask questions that are too personal, I feel empowered to say I’m not ready to talk about it.
6. Build a support team and a medical team.
Some people are eager to offer unsolicited advice and talk about their experiences with cancer. I appreciate their good intentions, but I did not want to make decisions based on anecdotal information. A good friend suggested, “Build your support team and build your medical team. Use your support team for support and your medical team for your treatment decisions. It is OK to keep them separate if you want to.”
7. A positive outlook makes a difference for me.
I used to hate the saying: Life is 10 percent how you make it and 90 percent how you take it. It made me feel like all my hard work only added up to a 10 percent difference. Now I realize that even if I can’t control a situation, I can control my outlook, and a positive outlook makes the biggest difference of all for me. I have made a conscious choice to focus on the positive. I have erased negative texts instead of sending them. I have chosen not to complain when things go wrong. The biopsy I had one month into the clinical trial had to be repeated the following week due to a processing error. Instead of focusing on the negative, I asked if they would take some extra time with the ultrasound to measure the size of my tumor. They agreed, and I had the relief of finding out it was already shrinking. We waited two hours for an appointment last week and spent the time Googling cartoons about long waits in doctor’s offices! Picture this: The patient is sitting on the exam table and his right leg is sticking straight up in the air. The doctor stands beside him with stars floating around his head like he has just been kicked. The nurse says, “Looks like appropriate reflexes for someone who’s waited two hours!” We were chuckling when the doctor walked into the room! When I am feeling especially discouraged, I always look for a way to reframe the situation in a positive light.
8. Cancer isn’t a competition.
I have been blessed to connect with two friends who are going through breast cancer treatment ahead of me. When we first met and shared our stories, I tried rank ordering who had the “best” and “worst” diagnosis and treatment plan. That is something I conjured up on my own, and it was not helpful at all. I still have three more months of taking pills to cut off the estrogen supply before I know whether I will have a lumpectomy or mastectomy, and I will only learn if I need chemotherapy after the surgical pathology report is back. This could end up really good or really bad. That does not negate the stress I’m going through during this waiting period imposed by the treatment plan I chose. I have lost a lot of sleep over the “what-ifs,” but I’ve also made good use of this time to consult with the radiation oncologist, plastic surgeon and mastectomy fitter so I will be prepared to make decisions when the time comes. I have a newfound respect for all women with breast cancer, regardless of the details.
Everyone has to find the path that is right for them. Writing poetry, e-mailing friends and writing in my prayer journal helped me process some of my emotions.
9. Stay engaged.
Mark found a friend whose wife is also going through cancer treatment. They have started meeting for lunch regularly. The most helpful advice Mark got from his friend was, “Stay engaged.” Mark sat down with me one evening and said he wanted to stay engaged but didn’t know what he wanted to talk about or if he even had anything to say. An hour later, we were still talking.
10. My faith is a source of strength during this process.
My first husband died when I was 37, and I learned I could rely on God in hard times. Even when I was mad at Him and someone else had to stand in the gap for me, I believe God was always there. I had plenty of time to re-evaluate my priorities and started living a more authentic life. Facing my cancer diagnosis almost two decades later, I was feeling pretty good about how I was living my life without regrets. I felt I was reaping the rewards of what I had been through in my 30s. That was – until I had lunch with Nancy! She is in her 90s and her husband was moving to a nursing home because of his poor health. Mark and I took her out for lunch to lift her spirits, and she ended up lifting ours. I told her I knew they were going through a hard transition, and it would be nice to know how long the roller coaster ride would last so she would know how to pace herself. Nancy replied, “Oh, honey, then how would my faith have a chance to grow?” That stopped me in my tracks.
Lunch with Nancy gave me the resolve to stop coasting on past experiences and open myself up to the new lessons cancer has for me to learn. I joke that my life goal is to take up smoking on my 100th birthday and light my first cigarette from the candles on my cake. That leaves me 44 more years to coast or grow.
You can’t gain speed coasting unless you are going downhill. I choose growth. I choose faith. I choose life.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
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