Living with myelofibrosis: a caregiver’s perspective on the importance of teamwork and a positive mindset
Jeff Bushnell is caregiver to his wife, Summer Golden, who was diagnosed with myelofibrosis (MF) in 2017. Here Jeff describes their strong relationship and their different, but complementary, approaches to living with the condition. He reflects on the importance of building an effective caregiving team, and he shares his thoughts on how patients and caregivers can best approach living with the condition
In 1998, airline pilot Jeff Bushnell was on layover in San Diego, California, when he stepped through the doors of an improvisational theatre class. There, he met and fell in love with Summer Golden. Jeff would spend the next year on a sailboat while he pursued the love of his life, leaving his old life on the East Coast behind him. Happily married to Summer for 16 years now, Jeff regards their life together as a dream come true.
“We’ve been together 24 years now, and when we’re out walking, we still hold hands. We get people that literally stop on the street and say, ‘You guys look so happy together and in love’. I consider that a real compliment,” Jeff says proudly.
There is another love in their life too: a shared passion for the theatre. Jeff explains how Summer had always dreamed of having a theatre of her own and how they worked together to make this dream come true: “We had been doing productions in rented spaces but in 2003 we found a building that was right. We gutted it and in four months built everything we needed inside.” Ever since then, the couple have been putting on productions there in what Jeff describes as a “labour of love”.
In late December 2017, the course of the couple’s life would change forever, starting with a knock on the door at 3 am. Outside stood an ambulance crew who wanted to check on Summer’s well-being because of great concern over the results of some recent medical tests. Summer’s doctor had noticed a mass in her abdomen and now saw anomalies in her blood results too, so she feared Summer’s appendix might be about to burst.
Appendicitis was quickly ruled out as Summer’s appendix had been removed long ago. The doctor then suspected leukaemia and ordered further tests. “It was New Year’s, so waiting for news over the long weekend was the longest three or four days I have ever spent. I immediately went home and started researching leukaemia on the web,” Jeff says.
When the test results came, a diagnosis of myelofibrosis followed. “That hit Summer hard because the doctor said she might have only five years left to live. That really changed how we approach life. I was very much a future-planner kind of person, and now I’m much more conscious of enjoying. Summer set her mind to live as best she can and not think about the disease at all.”
The couple’s joint decision to enjoy their lives to the utmost has been fundamental to their approach to living with the condition. Jeff also believes that teamwork is essential, and he has identified several aspects that are key to building and sustaining an effective caregiving team:
- find and use your individual strengths
- find a specialist
- connect with others
- listen to the patient
- give the caregiver time and space
- adopt a positive mindset
Building an effective caregiving team
“Summer has a strong belief that your mind controls your body, and she keeps herself physically fit, does a lot of exercising, including her 10,000 steps a day, and she keeps a positive attitude,” Jeff says. “She is interested, above all, in her feelings and her mindset, and she is not interested in the medical side of things at all.” To illustrate Summer’s positivity, Jeff explains that she has written and performed a comedic sketch about her diagnosis.
“As you might expect from a pilot, I’m very technically oriented,” Jeff says. “My first priority was to find out all I could about the condition from a scientific and medical standpoint. I’ve read almost all the medical papers about it, and I went to the American Society of Hematology convention a couple of years ago. I keep really close tabs on the medical side of it, like monitoring Summer’s blood test results on her healthcare portal—so we have both ends covered.”
Jeff and Summer’s complementary approaches to living with myelofibrosis gives them strength, as does their access to a doctor who is an expert on the condition. “We have a wonderful doctor who knows about the disease, and we have a tremendous relationship with her. We are blessed to be living in San Diego—there are two major cancer centres and world-renowned specialists right here. Many people that have this disease have to travel long distances to find a doctor that specialises in it, because there are so few.”
For patients and caregivers who are less fortunate in their location or their experience of healthcare, Jeff insists that it is really important to find a specialist so that the caregiving team is complete: “Yes, you may have to bite the bullet and travel to see the specialist once, but they work at places that can do telemedicine, so after that you get your local haematologist or haematologist–oncologist, who’s maybe not a specialist in the disease, to work with them in tandem. You still have your local doctor, but now you have an extra member on the team.”
Jeff and Summer believe that there is great value in connecting with others who are living with myelofibrosis: “The biggest jolt to Summer was hearing that she had maybe five years to live, but then we met people who’ve been dealing with myelofibrosis for 15 years. We’re old enough that 15 years would be our natural lifespan anyway, so we started to look at things differently.”
Jeff and Summer have since taken up the role of Empowerment Leads at Patient Empowerment Network (PEN), where they help others deal with the challenges that myelofibrosis presents. “Every month, there’s a different subject that PEN puts on the web or puts out in their online magazine, and Summer and I make informative and humorous little videos, about three to five minutes long, about our experiences as it relates to that subject.
It’s not something I ever thought I would be involved with. But it’s been rewarding. One day, I got an email from a guy in the Philippines who had myelofibrosis. He didn’t really know where to turn to: he had a haematologist but there are no specialists out there. I was able to give him some direction as to who to contact and how to use telemedicine to deal with it and involve his haematologist with specialists down at MD Anderson. That was one of the most rewarding things.”
Jeff believes that the caregiver is an essential part of the team when somebody is diagnosed with a serious condition but feels that this is not always understood: “One of the biggest problems with myelofibrosis is that it affects people very differently and they do not always look sick.
“We are extremely fortunate in that Summer’s disease right now is very well controlled, and she feels the biggest way it’s impacted her life more than anything else is fatigue; she has to get a good night’s sleep every night or it doesn’t work. And it’s to the extent that we’ve changed the hours that our theatre puts on productions.
“I’m heavily involved in a Facebook group for people with myelofibrosis, and I’m very shocked and disappointed to find the number of patients who say their significant other, who might be the caregiver, doesn’t take them seriously. They don’t listen to them because they do not appear sick.”
“The most important thing the caregiver can do for the person they’re caring for is listening to what they are telling you—and believing them.”Jeff
“There is no training for caregiving. And since you’re usually caregiving for somebody that you love—your parent, spouse or child—the emotional burden is enormous. The caregiver can’t let that get to them. You need to listen and respond in an appropriate way to that loved one because successful caregiving all comes down to the relationship you have with that person.
“From a caregiver standpoint, it’s really important to take care of yourself. I was an airline pilot, so I compare it to being on an airplane. If there is an emergency, what does the attendant tell you to do if there’s an emergency and the oxygen drops? You put the mask on yourself before you help the person sitting next to you. You must take care of yourself, or you will not be able to take care of that person.”
Jeff is an accomplished photographer with a passion for nature photography, and he has continued to pursue this interest after Summer’s diagnosis. He strongly recommends that other carers find time for themselves too: “Whatever keeps you going, you need to make time for yourself to do that, and you have to help the person you’re caring for understand that.”
The key is having a communicative relationship, Jeff explains. “Hopefully, the person you are caring for is astute enough to give you time, whether it’s just time away from them, or an hour each day to do something you like. You need to do that to recharge your own batteries so you are able to help them. That’s critical.”
Jeff and Summer approach the challenges of living with myelofibrosis in different ways: Jeff looks outwards to medical and scientific advancements, and Summer looks inwards to her mindset and physical fitness. However, they are united by a shared sentiment that the disease cannot become their identity.
“I would say, to the best of your ability, don’t become your disease—don’t let it become your identity. Remain the person you were before until you physically need to make adjustments. Some people have debilitating bone pain. And, in some people the exhaustion is just too much. But like anything else in life, you have to make adjustments and keep on going.”
In 2017, Jeff and Summer made a conscious decision that myelofibrosis could not consume their waking thoughts. Since then, their deep love for each other and their positive mindset has helped them to live their best lives. Jeff recommends that others keep positive and concentrate on living well.
“Live the best life you can and do everything possible that you want to do. You don’t know what tomorrow is going to bring. So, live in the moment and enjoy it.”Jeff
NP-GBL-MML-WCNT-220002 / Date of preparation: November 2022 Funded by GSK
RARE Revolution and GSK are not responsible for the content of external sites linked to within this article.