The Patient Becomes the Caregiver
I was diagnosed with lung cancer in 2013, fast forward four years and I am sitting in an ER with my mom trying to get to the bottom of her new and worsening shortness of breath. She had just had her knee replaced at 87 years old.
During her hospital stay for the knee replacement, she developed a blood clot, A-fib, and was wheezing every day. X-rays, tests, and labs showed nothing and it was considered to be stress from the surgery.
Mom's shortness of breath persisted
We kept an eye on her as she recovered. She complained of being more tired than usual but her recovery from the joint replacement went very well. Her shortness of breath and wheezing persisted. She insisted that she was fine, just doing too much.
Even so, much to her dismay, I put her in the car and off to the big city hospital we went.
Then they found a large mass...
The initial concern was the shortness of breath. She was examined thoroughly for blood clots, a few were found in her legs but her lungs were clear. It wasn't until they ordered a cardiac ultrasound that they realized her heart was surrounded by fluid, cardiac tamponade.
The cardiologist joined me and my sister in a small waiting area. He wanted us to understand the procedure that was about to happen to drain the fluid and relieve the stress on my mom's heart. Then he very gently asked if anyone had talked to us about 'the large mass in your mom’s chest'. I felt the air go out of my lungs and my sister's head dropped.
From shock to action
All of my siblings and I sat with my mom as the doctor explained her diagnosis. Stage 4 lung cancer. It was in her liver. If she did not respond to treatment she had maybe 4-6 months. As her child, I just wanted to absorb the shock for her. I wanted her to close her ears and just let me hear it all. It was devastating to see my healthy, 87 year old mom be given such sad news.
Targeted therapy gave my mom hope
The genetics of my mom’s cancer qualified her for targeted therapy, two different treatments over the course of her two extra years. The treatments, we explained, were to give her time and would not cure her cancer.
There were minor side effects for her that passed quickly and ultimately the treatment gave her quality time with her family and friends. Her life went quite routinely.
My mom was always able to cope with difficulty by creating an alternate world where everything was fine and was always going to be fine. For me, I chose to be realistic. I knew that eventually, the treatment would stop working.
My siblings and I were my mom's advocates
Behind the scenes my siblings and I talked and tried to plan for the day we knew was coming. We were her advocates in every aspect of her care. I went to all of her oncology appointments. They were confusing for my mom.
Sometimes I thought she chose not to hear what was being said. I always encouraged her to go to her appointments armed with questions. Sometimes she got mad at me for asking questions. We always explained everything to her clearly.
Mom did not let cancer steal her joy
That alternate world she created always protected her from reality and she would go about her day. Sometimes I think my mom ‘forgot’ she had cancer. There were days when she was more tired than others or not feeling well and she would ask what I thought was wrong..."um, lung cancer mom, remember" and she would laugh. That is one of the many gifts I have from my mom, laughter. While I am more realistic, I do always remember to laugh. There were so many instances where all I could do was laugh.
From beginning to end, caring for a loved one is fraught with challenges, heartbreaks, and sadness. The treatment did stop working for her.
Toward the end my mom was determined not to die...she insisted that it was not the cancer that was making her so much worse, it was the oxygen that we were insisting she use. She fought hard, then faced it all.
As cancer was taking more and more from her she turned her focus to us, her children. Telling us how she wanted us to live, move forward, be happy, strong. The end is shocking no matter how prepared you think you are; it comes from out of nowhere even when you know it is imminent.
As a caregiver, we wear many hats
The process of caregiving was challenging from the moment that doctor said, "the mass in your mom’s chest". You are forced to wear so many hats, but my most important hat was being her daughter.
My mom remembered to laugh along the way, and by doing so taught me to keep finding reasons to laugh and move forward with all of her lessons in my heart.
Have you had biomarker testing done?