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Inspirational Stories

Donna

Caretaker

Sparks, NV

The year 2021 was quite a year for us. It was the year of cancer. No one ever really prepares themselves for the diagnosis of cancer, and when you're told you have it, the emotional roller coaster you are about to embark on cannot ever be fully described in words. The fear, the exhaustion, the financial burden, the feeling of helplessness you experience is completely terrifying. In the year 2021, we started the fight of all fights, the fight to save my husband's life. This is our story of cancer. Our story of love, life, hope, and healing.

My husband awoke with the sniffles one morning in early December, and we had him tested immediately for the COVID-19 virus, and the test came back positive. Thankfully, it was a mild case similar to allergies. After quarantine ended, he was able to resume work and went to his scheduled appointment with a dermatologist right before Christmas for a routine, yearly skin screening. What I would find out later is that the doctor found a lump in my husband's neck. My husband didn't think anything of it as his endocrinologist had been actively watching his thyroid for years. He neglected to tell me the doctor wanted an ultrasound, and it wasn't until early January when I received a call to schedule the appointment that I asked the questions, "What's going on? What is this for?"

Once I got home and had a chance to speak to my husband, I could visibly see a mass on the left side of his neck. I was a little concerned but not overly at this point. We scheduled the ultrasound for January 20, 2021, and on January 21, 2021, we received a call from his primary care physician’s office. The medical assistant said she needed to speak to us ASAP. Now I was worried. I pulled over on a side street so we could take the call. She wanted us to go to the hospital the next day for a biopsy, it could not wait.  There was no definitive diagnosis, but with my medical background and working in the field for many years, I knew a "cannot wait" situation is not typical unless something was amiss. On January 22, 2021, a day before my husband's 54th birthday, we were at the hospital for a STAT biopsy. Over the course of the next few days, we waited patiently for the results. When the doctor finally called, it was definitely a form of cancer, and the referral to the oncologist was put into place. At this point, we were at the end of January, and the soonest we could see the oncologist would be the end of February. There is not a more terrifying feeling than knowing there is a form of cancer growing inside someone you love and having to wait for what seems like an eternity before having an appointment to discuss the diagnosis. They don't have a waiting list, they said. I would just have to keep calling, they said. I set my alarm every day and called the scheduler at the oncologist’s office at 8 a.m., 12 p.m., and 4 p.m. religiously. If I couldn't do it, my sister did. I was desperately waiting for a cancellation and needed to get my husband in. I reached out to my medical friends, please help! They all did everything they could, but I just couldn't get him in earlier. I remained vigilant, calling and calling and calling, and then it actually happened. The phone rang one afternoon, and it was the scheduler. They had a cancellation, did we want the earlier appointment?  "YES, YES, YES!!!" I screamed at my husband from across the room. Our appointment was set for February 10. Finally, we would get some answers.

Due to COVID-19, on our first visit to see the oncologist, John went in alone as I sat in the car on FaceTime so I could ask my questions. He said the mass on his neck was a "plasmacytoma." Many cases of plasmacytomas result in a diagnosis of multiple myeloma (MM), so we would have to go through more tests to determine if it was an isolated plasmacytoma or if it had progressed to his bones and was in his blood. John's plasmacytoma resulted in his blood cells producing antibodies at a very fast rate in an effort to fight off infection, the COVID-19 virus. Can you believe it? The new virus that nobody wanted actually played a part in early diagnosis and possibly could have played a major part in saving his life. Crazy.

So, it began bone marrow biopsy, CT scan, blood tests, we did them all. On March 2, 2021, we sat together holding hands in a small exam room and were given the official diagnosis, MM. Three lesions were found on his scan, two in his spine and one on his ribs. We would need to start a chemotherapy regimen as soon as possible. We would then go on to discuss many things with regards to treatment, but the one thing I refused to discuss with any of the opinions we received was John's prognosis. I didn't want to know what typically happens, sometimes happens, or what the statistics say. This is our journey, and not all journeys are the same. We would beat this.

I dove into my role as a wife, friend, and caregiver and read everything I could (except Google!), spoke to everyone who may have had answers, learned everything about this cancer, and joined a support group for MM patients and caregivers. We went to weekly treatments and had a drug regimen added to his pillbox. So many pills. So many very expensive pills. And then there was the insurance. John carried the insurance for us both, could he continue to work full-time? Should we look at other options? Day by day by day. How to make it and save his life was all-consuming and all I thought about from sun up to sundown. I did a lot of crying last year and had many sleepless nights.

The standard of treatment for those with MM who are eligible is a stem cell transplant. Scary. This would mean a month away from our home in a city with no friends or family, possible hospitalizations, increased risk of infections, isolation, and over 500 miles away. The thought of it all was overwhelming, but I knew we had to consider it. We had our first visit with the specialists at Huntsman's Cancer Institute and immediately felt support and a level of care that we had never experienced before. We felt we were meant to be here with this team. In a whirlwind end to the year, we would make three more trips to Salt Lake City. They harvested his stem cells in October, repeated scans and biopsies in November, a quick trip home for Thanksgiving, and off again for the transplant which took place on December 3, 2021, John's new birthday. His re-birthday. It was super emotional for us. This is our chance; this has to work.

John did amazingly throughout his procedure and his recovery. There were three days of hospitalization due to neutropenic fevers, but overall, he was doing tremendously well. We had friends, family, and people all over the world praying for us, and we felt every single prayer, every single wish upon a star, and every single bit of love. We felt it profoundly. It definitely kept us going on some days.

Nineteen days after the transplant on December 22, John's numbers were holding. He was strong and doing well, and they said we could go home. We would be home for Christmas!

And here we are, John is now +50 days transplant. I can't believe what we've been through and where we are now. What a wonderful gift we have been given. In March, we will go back to our transplant team in Utah and find out if the treatment was successful. I feel deep in my heart that it was. I feel deep in my heart that John will be in complete remission for a very long time. I hold on to hope and pray and find ways to be exceptionally grateful for all things otherwise taken for granted. I cherish every minute with him. I always have, and I always will.

It's been a year, for sure. We have come full circle, and on the eve of my husband’s 55th birthday, I am forever thankful for everything in my life. I'm thankful for the love and support of all those in our lives. I'm thankful for the support from others like us and those who share their experiences with us. I'm very thankful for the support from The Leukemia & Lymphoma Society (LLS). When you get that kick-in-the-gut kind of diagnosis and everything in your world is falling apart around you, an organization that understands and provides much-needed support helps more than words can express.

Thank you for reading my story. I've learned very quickly that a cancer diagnosis is not an immediate death sentence. I also learned early on that knowledge is power. Ask questions about everything, and advocate, advocate, advocate for your patient. No one is going to do it for you. This cancer is treatable, and there are so many resources available to help win this fight. I believe in medicine and science and the people who dedicate their lives to finding a cure. I believe in hope. I believe in my husband and his will to survive. Happy Birthday, John. You know you got this. WE got this. I love you.

Donna John