I suppose my entire experience with Thymic Cancer has revolved around “Let’s see what happens.” I suppose everyone who lives clinical trial to clinical trial can claim that as well, rightfully so. As of Thursday, I am in a new “Let’s See What Happens” phase, but one that is not going to push my cancer fight forward. I’ve said repeatedly that it may not be the cancer that kills me; it’s likely to be the treatment. That’s where this new experiment comes in. Although I’ve been off Afinitor/Everolimus since June 4, I only feel marginally better in the breathing department, even at sea level on my vacation in Europe, which I’ll discuss (show off) later. CT scans of my left lung look hideous. Besides the tumors squeezing in on the sides, it looks like the middle is filled with fibrous tissue. Even when my trusty oximeter says I’m above 90% on oxygen, I can’t get a full breath. Super frustrating and definitely limiting my activity.
Because I no longer have pneumonitis, my lung doc believes this is probably caused by toxicity from the Afinitor/Everolimus. He wants to put me on three months of a daily big dose of Prednisone to fix it, although he can’t say for sure that’s the root of the problem. On Thursday, Dr Akerley didn’t appear to be that big of a fan of the plan. We came up with a compromise: I’ll take the big dose (but not as big as Dr Iravani proposed) of Prednisone AND a low dose of Bactrim (antibiotic) for a week. If I don’t feel REMARKABLY better by then, not just “a little” better, I’m coming off of it… And we’re holding the Afinitor/Everolimus until we solve the breathing issue. Of course, if the Prednisone doesn’t work, we still won’t know what’s causing the breathing issues. It’s most likely NOT advancing disease, since my CT scan showed stability on the 4th. So here we are again at “Let’s see what happens.” It’s process of elimination to find out what’s causing breathing problems which may or may not be caused by the mets. And while we’re investigating, we are doing nothing about the mets. Not that there’s anything even halfway appealing for me to do if we wanted to do something. If I were a worrier, I’d be in high gear, in the stratosphere right now, I believe. In any case, I may (or may not) be more full of hot air (or cold, here in Park City. It’s 48 today) in five days. Stay tuned.
All of this came the day after I got home from a lovely European vacation. Mike G and I spent three days in Prague, which was as beautiful and fun as everyone says. We explored, ate (a lot), drank a Pilsner in its birthplace of Pilsn, and shopped a bit. We joined the rest of the Snowbird Vinters crew in Regensburg, Germany. We visited Nuremburg, too, and saw the courtroom where the Nazi trials were held. It’s a unique kind of eerie when you hear the stories of the trials and walk in to Courtroom 600.
From there, we sailed to Austria, which was my favorite. We got to go to a Mozart and Strauss concert in the Hapsburg’s Imperial Palace, explored Salzburg (think Sound of Music) and Vienna, and ate the best apple strudel I’ve ever had. Jamie also planned a wine tasting in Spitz, Austria, that was terrifically beautiful and fun.
I got on a bike for a tour around Vienna, too. My tour ended in about 30 minutes. when I realized I couldn’t get enough O2 to allow me to keep up with The Sporty Family that was the rest of the group. I swear, they did every fitness class, every hike, every bike ride. I was outclassed. I turned around with Roman, the wellness director, and we tooled through an amusement park and to a pharmacy so he could get shampoo (random, I know.) I am learning a whole new level of humility. I suppose it’s helping me grow. (Why, oh why, is there not an eye roll emoji on here???)
The end was 105 degree Budapest. It is beautiful, too. Either its history is exceptionally brutal, or our guide was trying to gross us out. She described punishments like nailing nails into a barrel, putting a guy in and rolling it downhill. (Surprise, he didn’t survive). And heating up a throne and crown and forcing the leader of a peasant uprising to sit on the throne and wear the crown. If that’s not bad enough. peasants who wanted to save themselves had to eat pieces of him. Budapest gave me nightmares.
Now, I’m back home with Linus and Lucy, mostly until the end of July. I’m hopeful about what the Predisone may do, but never overly optimistic. The summer solstice was two days ago, and my yoga teacher today said we are halfway through the year now, how will we make the second half better than the first. She ended class with this amazing poem.. Here’s my favorite part:
I don’t know exactly what a prayer is
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass
how to be idle and blessed, how to stroll through the fields,
which is what I’ve been doing all day.
Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
#defy #livefearlessly #relentlessforwardprogress
Thanks again Wendy — Mary Oliver said it so well — and you are doing it with your one wild and precious life.
Love reading these posts as they give me inspiration as I start a clinical trial to treat my CLL. Keeping you in our thoughts and prayers. Hugs and love.
You are loved, Wendy! ❤️
Ugh! Budapest… yikes. I had such high hopes 😂. Thinking of you. I never know what to say. Except I’m glad you’re still here, still adventuring & reminding the rest of us how to spend the days enjoying the journey.
Praying the prednisone does some good, you get some answers , for stability and for 02!! Glad you had a cool trip. I was in Salzburg almost 40 years ago-truly spectacular! Always thinking of you, Wendy. Love and hugs. John
I love your posts. Your optimism has actually helped me a lot. That may sound strange but it is true. You are an inspiration. Marmellata, Jambalaya and Crumpet also say hello to you and to Linus!
A true inspiration and someone that knows how to live life! Much love and prayers!!