In 2013, Elaine’s life changed forever. Her husband of over 50 years, Edward, was already suffering from Parkinson’s disease when he was diagnosed with stage IV melanoma cancer. Elaine's role grew from loving wife, mother, and grandmother, to full-time caregiver for her husband.
Immediately after diagnosis, Elaine and Edward faced immense challenges. From the invasive surgery to remove the tumor, to the rapid progression of Parkinson’s, and the eventual recurrence of cancer within five months, difficulty persisted.
Through every step of the process, Elaine remained strong. Despite the physical and emotional life changes she was experiencing, including feelings of immense guilt, worry, and fear, Elaine stood by Edward through it all. She advocated for him through every medical decision to ensure he received the best possible care.
Elaine remembers the unwavering feeling of guilt about her husband missing his annual physical checkup, that she believes could have led to a faster diagnosis of the tumor.
“Why didn’t I push him to go?” she would repeat to herself, wrought with anxiety.
When Edward’s melanoma recurred, his doctor walked Elaine and Edward through every possible decision. Together they landed on the decision to join a melanoma clinical trial. Initially, Elaine had many hesitations. No matter how much research she did, she felt unsure, confused, and afraid. The rapid progression of the melanoma changed her mind quickly however, as they had few other options at that point.
“Our doctor was amazing and I eventually felt confident that this was going to work. I had to take the chance. I had to take the risk because it was moving so quickly” she says.
“You just do what you have to do, and we did it,” says Elaine. “It’s your husband or your spouse, and you just try everything.”
Edward’s trial combined two drugs that were already approved for other uses, but had never been used to treat melanoma. The 16 month trial involved multiple appointments each week for routine check-ups and drug infusions. Elaine spent hours preparing herself and her husband for his appointments, both physically and emotionally.
She was constantly physically exhausted from helping Edward get ready for his appointments, making sure he was following the strict food guidelines enforced on infusion days, and commuting for hours back and forth to the Boston clinic. The energy she had left was spent worrying if her husband, in his mid-seventies, could handle the infusions. She couldn’t help but imagine how difficult it would be to live alone in the home they had shared for 57 years, if the trial was not successful.
Elaine spent hours preparing herself and her husband for his appointments, both physically and emotionally.
While the clinical trial presented many challenges, Elaine recounts positive aspects as well. When talking about the trial, she emphasizes how attentive and caring the trial staff was, taking care of all her husband’s medical needs -- even for his illnesses unrelated to the trial. Edward’s physician referred him to many specialists to help him manage all his medical needs, leaving Elaine to believe that along with battling his cancer, the clinical trial helped her husband's overall health.
“The nurses, doctors, and staff got to love us. They became part of our family there, they were concerned about him, how he was doing, and if he was doing okay. They took care of everything from getting him his favorite food to calling the technician to make sure he could watch his favorite show.”
Edward’s physician referred him to many specialists to help him manage all his medical needs, leaving Elaine to believe that along with battling his cancer, the clinical trial helped her husbands overall health.
Their children and family supported Elaine and Edward emotionally throughout the trial. The family grew closer together during the course of the trial, making Elaine's faith in her decision stronger than ever. Even when thoughts of a life without her husband flashed through her mind, she no longer felt alone in the darkness.
“In your head you have to know that when you hear stage IV, you think your spouse is going to die, so you cherish every moment that you have. You begin to look at life differently when you’re going through this trial. Life becomes beautiful. You finally understand what real life is about,” said Elaine.
Elaine hopes her story will help support and inspire others to never give up. Caregivers need to understand that the guilt, worry, and fatigue are all normal.
Elaine's final words of advice for caregivers as they navigate alongside a loved one’s patient journey were, “Don’t worry about perfection. Be the best you can, because that’s what anybody expects from you. They prefer your company over your perfection, always.”
Caregivers need to understand that the guilt, worry, and fatigue are all normal.
The clinical trial was a success in the end -- Edward has lived cancer-free for over a year now. Elaine and Edward are enjoying time with family and friends, looking forward to spending another summer on the beach. Elaine continues her role as loving wife, mother, grandmother and caregiver, helping Edward manage his Parkinson’s disease and keep the cancer away for good.
While the decision to join a clinical trial can be difficult for everyone involved, Elaine recommends that others strongly consider joining a clinical trial, because it could change their lives.