A Colorful Perspective
Imagine this scenario, your spouse undergoes a quadruple bypass and you’re the primary caretaker for him while he recuperates at home when you start to feel pressure and pain around your chest and are aware you’re increasingly out of breath and very tired. You’ve been exhausted for a while now, but have been too busy taking care of your spouse to pay much heed to it. It must be the stress. Your heart has been checked and everything is clear. And at least one doctor seems to think it’s in your head anyway, a sympathetic reaction to your spouse’s heart problems and bypass operation you’re told.
But you have a hunch it’s not, and one evening the pressure is mounting on your chest. You can’t ignore it any longer. You admit yourself into the local emergency room and then you’re asked the question you weren’t expecting, and couldn’t have guessed.
“Has anyone in your family ever been diagnosed with cancer, specifically blood cancers?” A doctor asks. It doesn’t make sense as you’re lying there, weak and tired with chest pain. It’s your heart that’s the problem. You’ve been short of breath for a long time. And then the doctor explains that you’ll be transferred to a bigger hospital in Jacksonville where you’ll receive a blood transfusion and meet with an oncologist. You don’t have time to question this and are confused. You wonder if anyone heard you correctly. But the doctor is resolute and tells you you have a very low hemoglobin and extremely high platelet count. And then everything changes as swiftly as your rapid heartbeats.
This was the story for Debra Milner. At 62 years old in 2017 she was eventually diagnosed with Essential Thrombocythemia (ET). And then Debra felt like she was on a leash; she went from not knowing what was happening to being constantly monitored. Weekly blood draws and appointments with a hematologist every four weeks were her new norm. Debra eventually got used to this rhythm and offers this advice for patients in a similar situation. “Having an MPN is not a one test and done disease. For some, it’s going to progress and change, and that change needs to be caught earlier rather than later. Know your body, learn what it feels like at different ‘numbers’ on your blood work. There are times, if you know what your body feels like at different levels, that you may become symptomatic weeks before your next scheduled blood draw, then you can let your doctor know you need a blood pull and have the adjustments made that are needed.”
Once Debra’s numbers normalized as much as they could, she and her husband were able to return to their camper and spend three months traveling. However, it wasn’t long until her symptoms began to worsen. In the fall of 2018, Debra’s platelets spiked to over 2 million, and she had severe asthma exacerbation; she wound up in the hospital for 10 days and was on oxygen for a month after. Her ET had progressed to Myelodysplastic Syndrome (MDS.)
Currently, Debra’s symptoms are related to MDS. She is pancytopenic, meaning she has low counts for all three blood types (red, white and platelets.) Since this past March Debra has had 19 blood transfusions and has gone through two rounds of Vidaza chemotherapy and is now scheduled for a stem cell transplant pending her blast counts.
Despite her limitations, Debra is honest about her feelings and how she copes with cancer. “I allow myself to cry when I need to. It’s a stress reliever. So many people won’t cry; some think it makes them look weak, and others have been conditioned that crying is just not the way. But, the occasional weep session is actually very therapeutic. I cry a bit, take a short nap, and wake up feeling much better.” It’s not all weepy for Debra though, last May she earned her Master of Divinity from Liberty University proving that sometimes obstacles can, in fact, inspire us to work harder and go after our dreams.
Debra also relies on faith, family, and friends, and finds joy in talking to others who are facing similar challenges, and she doesn’t have any plans of taking life too seriously. “I changed my perspective. I’ve always hated dealing with my hair, so I cut it short, very short and colored it blue for a year, and now it’s purple. I’ve wanted to do it for many years” Debra says.
Good advice to live by according to Deb; when life gives you cancer, cry a little if you need, but then throw in some bright color for good measure.
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.