I think this will be the final installment of my diagnosis process, and then I will start writing about the considerations and choices that follow it.
As I mentioned in my last post, the nocebo effect is at work again. Told that I likely have lung cancer, I dive into the Google-sphere and restart the horrible process of self-diagnosis. This, all in spite of the fact that all of my intuition was telling me that the tumor I had was not in my lung, rather that it was pushing into the lung from outside. If you have to pick a cancer to deal with, lung cancer is certainly not it. While a tremendous amount of advances have been made in the past decade, it has a low-survival rate. And my whopping 8.5cm grapefruit would have landed me straight into Stage IIIa – which gives one a 33% of living 5 years after diagnosis. See why I said not to Google this stuff!?
The next Tuesday I am back in the hospital, same day, same time, same nurses, same doctor. I experience a lot of déjà vu happening this day as I go through the procedure (much easier to sign the form saying I may get a pneumothorax or die!). The doc ensured me that he had a better idea of where to biopsy my tumor this time and that he would take more samples as a precaution. I was also given a little extra sedative and pain killer to avoid the OUCH that came last time. Everything goes smoothly, and before I know it, I am back at my house, sitting in the yard enjoying some winter sun. This day was remarkably different than the last Tuesday, as I felt no-post-procedure pain, more energy than normal and in general, the fog that had been clouding my mind and energy for the last week was lifted.
72 looooooooooong hours later, I am at the hospital with my sister to meet the oncologist to get the result. She comes in and quickly cuts to the chase:
You have a B-Cell Lymphoma - specifically something called Primary Mediastinal B-Cell Lymphoma (PMBCL), a rare non-Hodgkin’s lymphoma that tends to effect people between 20 and 40. It’s very treatable and has a good cure rate, and has a much better prognosis than Lung or Thymic cancer.
I breath a big breath out…. in ALL that googling I had done over the past 3 weeks, not once did I even consider lymphoma, despite it being one of the options. What a lesson in not getting ahead of oneself! In retrospect after learning more about this kind of cancer and its manifestations, it is a perfect fit with what I’ve been experiencing, feeling and noticing.
So I am suddenly in a state of not-knowing, trusting the doc that I do have a good prognosis feeling like I just dodged a bullet. Or maybe I just dodged ballistic missile! She explains that I will need a bone marrow biopsy to finish my staging and that the treatment will be chemo and radiation (both wrong suggestions, based on outdated information). She says from this point I need to see a hematologist/oncologist, as she is basically a lung cancer oncologist. I’m told that she has already spoken to this doctor in their system, who practices out of a small clinic in Golden, CO. She politely takes the rest of my questions, wishes me luck and then I sit for a few minutes in the room, processing everything with my sister. The unknown is suddenly known, I have a diagnosis, a label, a treatment target.
Time to finally go home and Google this PMBCL!
This is January 31st. 24 days after my initial chest x-ray.