I have had some tough reminders these past six months about how different everyone’s cancer journey can be.
Today was my check-up appointment at Toronto’s Princess Margaret Hospital. I walked into the hospital and headed to the blood lab, where it was standing room only. The man in front of me had tubes going into his chest, was bent over, and was gasping for breath as he adjusted his oxygen tank. He was maybe 50 years old.
I got my number – 85 (they were calling 7) – and sat down in the busy hallway to wait. A young dad walked past, holding his baby close. He told her they were going to meet “mommy after she gets her medicine needle.” Coming from the other direction were a man and a woman. The man said loudly, “Imagine that! No cancer anywhere!” The woman laughed, fist-punched the air and yelled, “Yes!”
Far behind there was a young man, walking slowly with a limp. He was pale and thin. He is my brother, Anthony. He also had a check-up today. We had joked earlier about the odds of having two Machados at PMH on the same day.
Diagnosed with advanced liver cancer last October, Anthony has finished intense radiation and is taking a TKI that is kicking his butt. He also has HIV and hepatitis C, which he contracted through one of the many blood transfusions he has had to treat hemophilia. It is because of the Hep-C that he now has cancer. I walk over to give him a hug and ask how the appointment went, and he walks away with tears in his eyes.
A few months back, we met with his oncologist for the first time. I wasn’t ready for the conversation. After all, with CML we talk about treatment, hope and life. This discussion was so very different. There was hope, but little else. And while my mind was reeling, my brother was smiling bravely through tears as he said to the doctor, “I am relieved. I thought you’d admit me today and I wouldn’t get to see my kids again.”
The next day he had an appointment for “breathing exercises” before he started radiation treatment. Neither of us thought to ask what that was. We were taken to a small room with a bed and a breathing tube, where a nurse asked him how long he could hold his breath. It turned out that radiation on his liver required “training” on how not to breathe. This was to ensure that his body didn’t move and the tumour was properly targeted. I watched in panic as the nurse put his wrists in a loose restraint, a clip on his nose, and then inserted a large breathing tube in his mouth. The idea was that he would breathe normally for a few minutes, exhale and then not breathe for at least 30 seconds. To ensure that no air got into his body, the nurse turned off the breathing tube. For those few seconds, Anthony literally could not breathe.
That was almost six months ago. Since then, my brother has had lots of ups and downs, good news and not-so-great news. After finding out that his liver function was failing he was taken off his medication. This is a huge blow when you feel that the drug is what is keeping you alive. But then amazing news followed when a scan showed no live cancer cells in his liver.
I feel optimistic. Anthony has a superb healthcare team. Everyone who cares for him is knowledgeable, optimistic, and willing to exhaust every option – exactly what you want as a patient.
I know he is grateful for this, but I also know that it’s hard to stay positive when your body is being battered by not only your disease, but also the medications that are supposed to be helping you. Every day he manages debilitating fatigue, nausea, swelling and pain.
So much pain.
Add the emotional impact that comes from knowing that your life is under siege by something insidious, something you have no control over. There’s a feeling of powerlessness that just makes you want to “lie down and wait for what’s to come,” as he said to me this morning.
I love my brother. And I want him to get better. I want all the pain to go away. I want to be sitting with him in twenty years complaining about our kids. Even more, right now, I want him to believe that he’s going to be ok. I want him to have hope.
I would never call CML a “lucky” cancer because there’s no such thing. Just as there’s no such thing as an easy cancer journey. But I know for sure that my journey with CML is a million times easier than my brother’s journey.