Chris Zavadowski, Caregiver
“We worked hard to get my Dad in front of the most qualified experts possible.”
In 2007, Chris Zavadowski’s father, Rich, began experiencing persistent skin issues and excessive chills. He was 64 years old at the time. A dermatologist took a biopsy, diagnosed Rich with an allergic reaction and sent him on his way. But as his symptoms worsened, Chris and his mother encouraged him to undergo further testing, believing his symptoms could be the sign of something more serious. Rich underwent a series of blood tests, which showed some irregularities, prompting him to make an appointment with a local hematologist.
The hematologist/oncologist noted that Rich’s lymph nodes were enlarged, and that it could be an indication of something very serious - possibly lymphoma, but advised further testing including a computed tomography (CT) scan, bone marrow biopsy, and surgical biopsy of a lymph node.
Finally, a Diagnosis
While dozens of tests started to point toward lymphoma, it was unclear what type of lymphoma. In fact, Rich’s lymph node biopsy continued to baffle the local pathologists. The process of getting the right answer was exhaustive. Even one of the biggest national labs took more than 6 weeks and couldn’t confirm the diagnosis. After several months of chasing doctors, and unanswered questions – it was becoming increasingly clear that Rich still was not getting the answers needed.
Not wanting to wait any longer, his Dad went for a second opinion at the National Institutes of Health and was finally diagnosed with a very rare, aggressive lymphoma -- Stage IV Peripheral T-cell Lymphoma, unspecified – which helped doctors determine his treatment options, ultimately saving his life. Later, Chris’s family got his previous skin biopsies from 2007 over to NIH and they confirmed this rare cancer was present in those biopsies also – a reminder that his father’s illness could have been caught sooner if his local doctor’s had been more versed in this type of blood cancer.
Rich’s cancer was as advanced as it could be (appearing in his blood, lymph nodes, bone marrow and metastasized on his leg and ribs). While an estimated 662,789 individuals are living with or in remission from lymphoma, Rich’s specific diagnosis was very rare. There was not really a standard treatment, and with “regular" chemotherapy, Rich was told his chance of survival was relatively low (20% after 5 years).
Chris understood that his father’s health was failing and that undergoing the effort to seek the right treatment and guidance was too much for his parents to manage alone. Luckily he lived close to his parents’ home in Virginia and runs his own businesses, so he had the flexibility to join his mother, Mary Ann, in accompanying his father to doctor’s appointments. Chris helped his parents by managing many of the sheer administrative burdens such as setting up appointments, asking the doctors every conceivable question, recording all of the appointments, compiling his father’s medical records including photo copies, emails, test results, etc., which needed to be transferred from doctor to doctor.
Getting the Right Right Treatment
As a caregiver, Chris and his Mom stopped at nothing to ensure that his Dad received the right course of treatment for his rare diagnosis.
Don't settle for only your local doctor’s opinion. Do everything in your power to get several experts to weigh in. Second opinions can literally be life savers - they have been for my father multiple times. When my father was diagnosed, we consulted extensively with all of our lymphoma specialists. We worked hard to get my Dad in front of the most qualified experts possible. They all agreed; a clinical trial was his best chance of survival. That’s why my Dad decided to be part of research "protocol" run by National Institutes of Health (NIH) – National Cancer Institute (NCI).
While it was a much more aggressive treatment, with increased side effects and risks, the clinical trial was also something they were testing specifically for t-cell lymphomas. It involved six three-week cycles of 5 days of steady chemotherapy, repeated over a period of about 4 months – amounting in a total of 650 hours of treatment. It took its toll on his energy, memory, mood and cognitive capabilities, but thanks to his family and friends, he still kept in overall good spirits.
Laughter is the Best Medicine
The experience was difficult for Chris’s father and the family, but they worked hard at staying positive and making the best of it. Chris shares some of the ways he kept a smile on his Dad’s face and made the journey more manageable for himself and his Mom, who took on the bulk of caregiving responsibilities at home.
During his father’s first few cycles of treatment, he didn’t experience any of the side effects. He was able to take his treatment with him via a fanny pack that housed the chemotherapy. Chris and his Mom would check Rich out for the day. They made a point to mix in theater, movies, road trips, and their infamous funny wigs for every new cycle of treatment which the hospital staff enjoyed wearing as well. Essentially, they added as much "life" as he could throughout Rich’s treatment.
As a caregiver, Chris understands that it can be overwhelming at times to support a loved one battling blood cancer. He learned some valuable lessons from his experience:
It is important that the caregiver doesn’t get pushed to the wayside. Chris understood that his mom was enduring the bulk of the burden of caring for his father at home. So he tried to take her out periodically to do something fun and give her a mental and physical break. Caregivers make tremendous sacrifices, but Chris recognized that in order to be an effective caregiver, you need to also take care of yourself sometimes.
Chris and his family also declared “No Medical Talk Weekends” – where they agreed not to discuss medical issues, so that they could be reminded of all the other things they enjoyed talking about before cancer hit.
Surround yourself with network of support. While some people may be more private than others, Chris’s family found that sharing their story with others generated an outpouring of support that helped keep their spirits riding high during their journey. Chris set up a private blog with video updates so family and friends around the world could follow his father’s story and offer support. The blog became a huge source of motivation and inspiration for Rich.
One of Chris’s most important lessons during his journey was the understanding of how critical research is to saving lives.
By supporting research (either with time, money or by participating in a trial), you become part of the eventual cure and improve the quality of life for others. My father is now a part of the "solution" for cancer - he helped researchers learn more about this crazy disease. And some day down the road when they cure it, he'll have played his part in that. You go, Dad! The fact is, this research WORKS. My family stands here as LIVING proof.
During his father’s fifth cycle of treatment, the cancer vanished from his body. He has been lymphoma-free for over four years (and counting)!