When we were in the “thick of it”, all we could do was wish for the days when we would leave all the madness, this nightmare behind. We would live our lives quietly and simply. We would live with humility and gratitude for this precious thing called… life.
Perhaps we would even laugh at the terrible terrible nightmare we had lived through. In this idyllic world, there was a distinct line between being a cancer patient and not. Where did I get this impression from?
It’s not that simple.
Being in remission is a continuous process. Time is of the utmost essence, where longer you are in it, better your chances. This fact is well known, albeit it is discussed in terms of 2 and 5 year event free survival.
So, it took us by surprise when we found ourselves in that all too familiar “space” again; We are back in the battle mode.
No, cancer has not returned. We are making an acquantance with their ugly cousins, the side effects of cancer therapy.
For us, the issue is her lungs. She has has moderate amount of GVHD and Bronchiolitis obliterans has (most likely) reduced her lung function. We were around 50% on FEV1.
Now, it has decreased to 42% range. Maya’s oncologist (our favorite doctor) already has the ball rolling. We must act now! Why?
“Chronic GVHD, which occurs in 30-70% of allogeneic transplant recipients, is the major risk factor. The prognosis is very poor after development of this fixed airway lesion, with a survival rate of 13% at five years”
We are once again, pushed into action. Current thoughts are:
- We are dealing with some sort of infection. This is unlikely as Maya’s been on anti-viral, antibiotics and anti-fungal. But it could still be some sort of infection.
- We are dealing with pulmonary fibrosis. PF is not reversible. If we are dealing with PF, the best we can do is not to lose additional lung function. In this scenario, we’d take the 50%.
- We are dealing with Bronchiolitis Obliterans. There are a couple of options:
- We treat with SAMS. (Steroids, Azythromycin, Multelukast and Symbicort) There are existing studies in phase II. So, there is some traction here.
- We treat with Imatinib.
Side effects from Azythromycin and Imatinib are something else. And we are also discussing whether a lung biopsy would be instructive.
I tell myself that we’ve been here before. Many many many times. While we can’t say that it feels comfortable, but all the emotions we feel are all too familiar, all too real.
Is this it? Will we lose her from the complications?
What are we dealing with? We still don’t know. And we still don’t know which direction to take. There are millions of things rushing through our heads and none of the thoughts are comforting.
We push these demons back and focus on Maya and what we need to do. In the mean time, our oncologist has set the wheels in motion.
We are starting a dialog with the surgeon for a lung biopsy. The decision has not been made yet, but we need to be prepared.
And each time Maya coughs, it’s feels like a dagger to our hearts. Push it back! Time to focus!
We’ve been hugging Maya more. We show her how much she means to us. How much she is loved. And this is how we spent the past few days. Worried, hoping for the best, spending time again researching. And it is with hope and reservation that we did another PFT this morning.
The result was astounding. From FEV1 value of 42% a week ago, it’s up to 54%. This value is better than what we were accepting. This is unheard of and definitely unexpected. It has taken a year to get Maya’s lung function to improve just 8%. And over this week, it’s increased 12%.
The week of worries simply evaporated. And we sigh a sigh of relief.
We don’t know what tomorrow will hold. And just as we were getting used to our “brave new world”, cancer and its thug friends threw us a gentle reminder that there are no guaranties in life. Ultimately all we have is now, the confluence point of both the past and the future, which we call the present.
As we peel back the sheaf through the kaleidoscope which we call cancer, we are left with the most important things in life; this mere moment with the ones you love. And that, is all we ever need.