Since my first diagnosis, I have received a fair share of bad news from doctors, which, you can imagine, is not fun, especially when we’re talking about cancer. And since the relapse, they have become more frequent and their content – slightly more depressing.
But either it was before or after the relapse, I can say again that it always sucked to hear bad news about my condition. At the same time, it was also never the same experience. There’s always a concoction of feelings in you, and they express themselves differently every time. Some bad news leave you with a high dose of uncertainty; others leave you hopeless; yet some might just shock you. It’s almost like getting punched in different parts of your body. On top of that, you have to relay that same information to your family and friends. Picking the right approach for each person you’re talking to, you’re then forced to create a different experience with each person.
Let’s go back to the first time I heard my diagnosis. The Urgent Care Center in CA took an X-ray and told me that there’s a mass in my chest and that I should go to an ER to confirm it with a CAT scan. A lot of uncertainty, but also a small amount of hope. Maybe the CAT doesn’t show anything, and the X-ray was a false positive. Or maybe the CAT confirms the mass, but it’s benign and can be removed with simple surgery.
Then, after the mass had been confirmed, the doctor said that it could be thymoma. A little more shock this time. I may have cancer… at 27. But I also remember the same doctor telling me that thymoma has a good chance for a cure in young people. So there was, again, a small amount of hope.
As the results of the biopsy of the mass confirmed that I had leukemia, a huge amount of uncertainty and fear hit me. Especially after the doctor told me over the phone, ‘Let your company know right away, this is a life and death situation’. Alright… How deadly is leukemia? How much time do I have left? What happens to my work if I have to go back to Boston for treatment for half a year? What about all the stuff I moved from Boston?
Fast forwarding a little bit, I was in my oncologist’s office, processing the news that the latest PET scan showed relapse in my chest. More fear and shock… How likely can I be cured after a relapse (I’d heard before that each relapse makes the possibility of a remission lower) ? I also had had this wishful thinking that the stem cell transplant had already cured me, so this came as a surprise.
The list keeps going: the failure of the first chemo after the relapse; then the failure of the second chemo; pneumonia, leading to more bad news about a tough mold growing in my lungs; leading to even more bad news that the worst thing might happen to me within a few days. Each time, it was more painful to hear the news, but the level of pain alone didn’t define the entire experience of how I perceived the news.
Suddenly, there was good news! The doctors and I managed to put the pneumonia under control. Yayy!
This, of course, didn’t last for long, because a few days later, the leukemia came back to announce itself. One might say that this the worst type of bad news, kind of like a ‘stick and carrot’. ‘Here, have some hope about your condition, enjoy it for a little, and, now, for the real bad news.’ The reason I say the ‘real bad news’ is that it’s actually the underlying problem, the leukemia, that is making my condition worse this time. The pneumonia was simply an additional problem that the leukemia indirectly created on top of itself.
But it’s not all bad news. I’m back to the Decetabine+Venetoclax pair of medicine (see Recap 4 for a reminder about what those are). My counts are not exactly under control – they’ve been fluctuating up and down – but at least they’re not climbing up non-stop like last time.
So the latest piece of news is not bad news, it is mixed news. And with something like this, the uncertainty I’m feeling should be skewed towards cautious optimism. Which is what I’m trying to do: monitor the blood counts every day, hope that the trend goes down and gives me more time.
Just another chapter 