Never Give Up

by Joyce LofstromDecember 19, 2019View more posts from Joyce Lofstrom

Dear Cancer:

So much to say about ‘being touched by cancer…’ My letter covers my own cancer journey and that of my son. We were both young adults with cancer…I survived. He didn’t. Here is our story.

As a survivor: I was a young adult with cancer….in 1978…at age 25…now, some 41 years ago. In fact, I have had cancer six times: 3x breast cancer and 3x thyroid cancer.

I was working at my dream job as a newspaper food editor and restaurant critic in the Chicago suburbs, moving from my hometown of Kansas City, Mo., to take this job. My doctor felt a lump in my neck during an exam. It was still there 2 weeks later, and then, he knew it wasn’t an inflammation, but something else. He wanted to know – did I ever have radiation treatments, which increased my chances of having cancer by almost 100%.

I did have radiation treatments for acne during high school and after college. But they were ‘light treatments.’ Eventually, the dermatologist admitted to me that these visits where I laid on a table with a lead vest on my chest were indeed radiation. The vest supposedly protected my chest but not my neck…thus, the thyroid cancer. And in the late 1960s, this treatment was accepted.

So, from 1978 – 2009, I had three surgeries for thyroid cancer: removal of my thyroid gland, removal of a lump, and finally, a neck dissection, which is removing all the lymph nodes on the right side of my neck where my cancer appeared. Over the years, I had two rounds of radioactive iodine, the ‘chemo’ of sorts for this type of cancer.

DCIS breast cancer followed a similar path with two separate lumpectomies, one round of radiation, and finally, a mastectomy and reconstruction of my left breast, the saga of my breast health from 1999-2011.

I have been lucky. My cancer has always been somewhat localized and treatable. Always. No one ever told me I was going to die, for which I feel quite lucky. The fear of dying always surfaced in my mind, because as a cancer patient and survivor, I always felt the next time would be it. The thyroid scan or mammogram would uncover something else, a new cancer, lump, or cancer issue.

So far, it hasn’t. Yet, I still suspect, eventually, this reprieve may dissolve into a new diagnosis of cancer, of cancer that could claim my life.

As a parent: Now, my story segues to my son, Max Mallory. He did not experience the same outcome in his cancer journey. Max traveled a seven-month path from cancer diagnosis to his death of advanced testicular cancer. He died at age 22, almost one month from his 23rd birthday in 2016.

Max was born with one testicle, like his father, Chuck Mallory. Thus, he had a genetic predisposition for cancer (me) and for cryptorchidism (his dad), the medical term for undescended testis. His dad never had cancer, and discovered at age 21, the undescended testicle had atrophied.

Max had surgery at around 13 months to look for this testicle, which we learned did not exist, according to the pediatric surgeon who performed the surgery.

Thus, life continued with no pediatrician ever asking about this missing testicle or checking for it. Max lived in three different cities during his young life, moves based on me relocating for career moves. Although his father and I divorced in the late 1990s, he was always with us in the same city. We raised our boys (Max has an older brother John, now age 33) together. Max saw doctors on a regular basis, and to be honest, we didn’t worry about Max having one testicle. We thought he never did.

I’ll just say, his cancer journey was quick, painful and surprising. From the night of his diagnosis at 10:30 p.m. in the ER at a suburban hospital until the night he died, Max had someone spending the night with him. Most often, it was his dad. Following his chemo, his treatment was not in the city where we lived, so we took turns getting him to appointments. We spent the weeks of his final treatment with him going back and forth from the hotel to his hospital room.

His dad and I were with him on his last night; we watched him die due to the tumors in his brain bleeding across both hemispheres.

Max never gave up, continuing through four cycles of chemo, two surgeries – the RPLND that removed the cancer mass of his undescended testicle in his abdomen. A brain surgery took care of the only remaining cancer in his body after the initial chemo. He went through two weeks of rehab because he had lost the use of the right side of his body due to now recurring spots on his brain.

The final step was high-dose chemo and stem cell transplant, his stem cells. Again, he had no cancer except in his brain. We knew this final treatment was challenging, but we also expected success, as did his doctors. No one ever told him or us he might die.

I think Max knew more than he told us. He had just started his first job in video game design at a start-up in the town where he went college. He had his own apartment and his dad’s 10-year-old car. He had plans, like any young college graduate. But we learned, he had also paid his bills and asked one of his close friends to manage certain belongings and his personal data.

Max’s death devastated our family. It was so unexpected. Now, more than three years later, I can say we continue to remember Max every day; we also now know that we must and want to continue on with our lives, even though Max is not with us. We have a family foundation, The Max Mallory Foundation. We fund an annual scholarship and cash prize for students studying at his alma mater in his major. We have a garden in his memory in our backyard, both backyards – his father’s and mine – in different locations.

What young adult cancer survivors or patients need to know: Each situation is so different. Ask questions. Find out what is going on with your cancer situation, if you don’t have the needed information. I was convinced at age 25 I was going to die from my thyroid cancer, until a female medical student came into my hospital room one evening with her textbook. She explained everything to me about the thyroid gland and my cancer, what to expect, and how I would survive.

I had a strong support group of friends and family. Now, online and in-person resources, such as through Elephants and Tea and Lacuna Loft, which Max knew about and was part of. Max also had an Imerman Angel, a young man who had gone through a similar journey with testicular cancer who talked with and helped Max through his journey.

And as Max wrote in his journal – never give up!

 


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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