Before I start my mom’s post, I want to give the backstory to the guest blogging.

I’ve asked a lot of questions of people in my life and people that I have met over the last year and a half. I have heard amazing stories of resilience. People comment to me about how strong, brave, or resilient (pick the adjective) I am, since I starting this journey of living with terminal cancer.

The truth is, we all go through stuff. Everyone has a struggle or a hardship. Life is hard. So I started asking people, “What is the hardest thing you’ve gone through, and how did you or do you get through it”?

When I asked my mom to write her story about the hardest thing she ever went through, I thought it would be her infertility struggle. I’ve spent my life knowing how hard that was for her. So many people getting pregnant easily around her, skipping baby showers because it was too hard, gaining weight from stress eating, and then being asked when she was expecting. But then she told me that’s no longer the hardest thing she has been through.

It must have been a mental block for me, but she has a child with a terminal illness. As a parent now myself, I would take this illness 1000 times over in place of my children. As I am positive she would too. I remember being in my first CT scan and how uncomfortable it was and thinking, “Thank God this is me and not them.” I cannot imagine this experience from my mom’s perspective, and I pray I never will.

Here is my mom’s story of resilience for the hardest struggle of her life:

Amanda asked me to write for her blog. Her description of what she wanted me to address was the hardest experience of my life and how I dealt with it. She said she wanted me to talk about something very difficult that I had managed to survive, overcome, and move past. Imagine both of our surprise,
when it turned out that we each had a different experience in mind. Amanda expected that I would want to write about dealing with infertility. Of course, this makes perfect sense, as, until October 2022, that was absolutely the most difficult experience of my life. Of course, on October 27, 2022, we learned
that Amanda had been diagnosed with Stage 4, Metastatic Lung Cancer. Since that day, having my one and only child living with Cancer is for me the most difficult experience of my life.

As this writing is also Amanda’s origin story, I will tell you a little bit about my experience with infertility. Eddie and I got married in 1977 fully expecting to quickly conceive a child. When that did not happen,
we both underwent medical testing, and it was determined that I would have a hard time getting pregnant. There was nothing drastically wrong with either of us, but low hormones on both sides meant extreme difficulty in conceiving. It was a great disappointment to us. Adoption was our best option if we were to become parents. With individual counseling and couples counseling, I managed to mourn the loss of the child that would be genetically derived from Eddie and me. I came to understand that my
deepest desire was to be a mom, however that came to be. We investigated adoption and learned that the best fit for us was Vista Del Mar, the Jewish adoption agency here in Los Angeles. We were assigned a social worker. She investigated us thoroughly. About three years after we started the journey with Vista Del Mar, we were matched with Jeannie. We met and got to know each other over a couple of visits. Jeannie decided that Eddie and I were whom she wanted to place her baby with. Amanda was
born on December 17, 1985. We picked her up from the hospital on December 19, 1985, and began our lives as a family. This description, of course, condenses a long period of time in our early married years.

And now on to nineteen months ago:
It was so exciting anticipating the birth of James Matthew and Benjamin David. We were at the hospital at the time they were born, October 17, 2022. Two perfect and gorgeous baby boys! A couple of hours after their arrival, we were able to spend a few minutes holding each of them and expressing our joy. Two days later, Amanda and the boys went home. Over the weekend, Chris took Amanda back to the hospital as she had a very bad cough. The doctors drained the fluid from her lungs, which helped relieve the pressure and I believe that she felt better. The boys were born on a Monday and the following Monday we held a Bris for them at our house. It was a grand celebration. So many people we love were there to share the joy we all felt. I truly felt as if I were on top of the tallest building of happiness. I couldn’t imagine ever feeling happier.
The very next afternoon Amanda called. She told us she had gotten a call from the doctor, and he told her that abnormal cells had been discovered in the fluid that had been drained from her lungs. The day after, she shared the news with us that the diagnosis was Lung Cancer. Suddenly, my world collapsed. The next few weeks were a whirlwind of information. Amanda had a PET Scan. We met with the Oncologist to get the results of the scan. The utmost hope was that genetic testing of the fluid from her lungs would confirm what the Oncologist suspected that Amanda had a gene-mutation form of Cancer. I believe it was about 10 days later when her specific diagnosis of ALK-Positive was confirmed. She immediately began treatment with a targeted medication that has been very successful in treating her disease. I can say that those initial few weeks and then months were the hardest time of my life.

At first, I felt filled with rage at the unfairness of this disease attacking Amanda at the very moment she should have been only concerned with changing diapers and feeding babies and getting some sleep. Every day when I awoke, I felt that anger about her Cancer. I also felt rage at the fact that I, a first-time grandma, had to also worry about the survival of my only child. I just wanted to revel in the pleasure of holding and loving my grandsons. I wanted to bond with them. I didn’t want to think about the Cancer.

Of course, there was also an underlay of fear. Was it possible that I would outlive my daughter? Could I even survive such a situation? I do know people who have lost a child. I know the pain is beyond description. Sometimes I would wake in the night with fear gripping my chest. Going back to sleep was out of the question. It was a time of anger alternating with fear. And then time passes.

Once the initial shock wore off, I felt that I was left with a choice: do I dwell on the unfairness and the uncertainty of her Cancer? Or do I live each day and make it count. Do I worry about her health? You bet I do. But I don’t spend each day thinking about what the future may bring. I am driven to be as helpful to her as I can be. I love the time spent caring for my grandsons. I love the time spent laughing with Amanda. We joke about using the “Cancer Card” to get a little extra benefit out of trying situations.

As time has passed it has become harder to hold on to the anger. I’m not sure what I got out of it at the beginning, but after months of exhaustion from feeling angry all the time, I no longer wanted to focus on the unfairness of the Cancer. It became just too tiring, with no benefit. So, I gradually began to forget to be angry or scared. My biggest inspiration during that transition was watching Amanda. I thought to myself: “if Amanda, who is the person with the Cancer, can smile and laugh and enjoy her babies and her husband, and her life, surely, I can too”. I have two very special grandsons. I cannot imagine enjoying anything more than spending time with them.
I don’t know what the future will bring. My goal now is to live in the present. I want to drink in the experience of being a grandma. I want to revel in each accomplishment that my grandsons attain. I live for the smile on each of their faces when they see me. My heart grows when one of them reaches out to me to hold him.

I stopped writing this a few days ago. I couldn’t figure out how to end this story. When I awoke this morning, I realized that I can’t figure out how to end this writing because this story is not about how it ends. It is about how I have learned to live each day, feeling present and focusing on what the day will bring. This is especially true if today is a day that I get to see Bennie and Jamie (and Amanda too!). I will not focus on what tomorrow will bring. I will live fully today. Then I will live fully tomorrow. I know that every day will not be easy, but I choose to find something joyous to focus on today.