By Lisa Machado
Before I was diagnosed with CML, I had never heard the words, ‘living’ and ‘cancer’ in the same sentence. Like most people, I equated cancer mostly with death. It seemed like such a contradiction to me. Understanding how I was going to ‘live’ with cancer was one of my biggest challenges in the early days.
As the years wore on, I heard about living with cancer more and more, and I continue to be amazed by the number of people who are affected. It gives me hope that with each person, we are getting closer to understanding this insidious disease.
There is an incredible sense of positivity that surrounds CML – for those of us whose disease has been kept at bay by medication, we are incredibly grateful. We are all very aware that had this been just 15 or so years ago, we probably wouldn’t be here to tell the story. It’s the story that most of us tell.
But some unsuccessfully try two or three treatments, and watch their test result numbers continue to climb. You may have the “lucky” leukemia, but you may not be one of the lucky ones. It’s devastating.
In my time at the Canadian CML Network, I have worked with many people who find themselves at the end of the medication road, trying to sort out the details of a transplant. For them, ‘living’ with CML has never been a sure thing.
Not to tell this side of the CML story is a mistake, and it does a dishonour to those who are struggling in the midst of what everyone calls a great cancer story. As I write this, I think of Aubrey and Dave, two people whom I have had the great fortune to have met through my work with CML. Both have had transplants and continue to live with significant health challenges because of those procedures. They remind me of the strength of the human spirit. Their partners, who are on this crazy ride with them, are optimistic, determined and courageous. Their stories are different from the ones we hear most often. But in many ways, they are the most important – they tell us that there is still work to be done.
I met Gee-u Guillero last year, when he contacted me through The Canadian CML Network’s Facebook page. He and his wife, Aileen Rose Llagas, and two-month-old twin girls Alecka and Alexis, were moving to Canada from the Philippines. Gee-u was looking into what he needed to do to make sure his health was taken care of. Once in Canada, Gee-u continued to get his medication from the Philippines while he waited for a referral to a hematologist. Four months later, when he got in touch again, he was still waiting. And he was no longer getting his medication from the Philippines.
“Is four months too long to wait?” he asked.
We worked together to get the referral, and, Gee-u finally got the care that he needed. Unfortunately, his blood tests showed that his disease was now in accelerated phase. The next hurdle was to restart his medication, the monthly cost of which was more than 10 times what he earns as a cleaner. With the help of a dedicated drug access navigator, who arranged financial support, Gee-u got his medication in a matter of days. He was thrilled.
By December 2016, it was clear that the medication was no longer working. He was switched to another, but by January his doctor was recommending a transplant. On April 28, 2017, Gee-u underwent an allogeneic transplant, and began the long road to recovery. Aileen Rose took over his duties as a building cleaner so as to not jeopardize their income, or their home (since they get an apartment in exchange for Gee-u’s labour) while their girls attend daycare.
There are countless things that Gee-u should be worried about. But what’s keeping him up at night is how he will care for his family while, instead of being at work (which offers no health benefits), he spends four to six weeks in the hospital, and a year recovering.
I saw Gee-u the day before he had the transplant. When I asked him how he was feeling, he said, “All I am hoping for is that when this is over, my wife and I, and our girls can have a healthy, happy life.”
We wish that for you too, Gee-u.
A GoFundMe page has been set up for Gee-u and his family to cover costs, such as daycare, transportation, post-transplant medications, and other living expenses. Despite the long road he is about to travel, Gee-u can find a little bit of peace knowing that his family is being looked after, and he can focus on his health. Visit our Facebook page for more information.
Somewhere in the world, someone needs a matching stem-cell donor to stay alive. Tell your friends and family that it’s easy! With just a simple swab of a cheek, a life could be saved. Visit OneMatch to register.
Don’t miss “Living Well with CML 2017” in Toronto. Learn about how you can live your best life with CML. For the agenda and to register, visit cmlnetwork.ca.