Thursday, November 07, 2019

Bumpity Bump Bump

It’s about time I update this little blog.

I’m doing decently, much better than I was when I wrote the last post. The increase in steroids has proven to be incredibly helpful, making it much easier for me to function. My balance is still a mess, but I no longer feel motion sickness when I move my head (that was pretty awful). I’m embracing all the fun steroid side effects (hello again, puffy face), because I feel so much better thanks to these not-so-fun meds.

Currently, the main issue is my balance. I’m fine when I’m seated, but I feel wobbly as soon as I stand up. If I’m holding onto something, I’m pretty stable, so I casually lean on things like nobody’s business. Really, if there were a contest to see who could nonchalantly lean against any wall or ledge, I’d be the champ.

The general consensus from doctors across three states is that the changes in my cerebellum are treatment effect, rather than new growth. The trial drug is known for causing balance issues, so who knows what is causing what. The plan now is to watch and wait, and hope that my cerebellum can heal and nothing starts growing again.

Just another bump in the road.

Meanwhile . . .

My latest chest CT showed that I had a small pleural effusion. That was a shocker. These are not uncommon in the lung cancer world, but it was a brand new one for me. I haven’t had a thing wrong with my lungs since 2013 (kinda funny that my lung cancer has mostly caused brain issues for the past 6 years). I had a thoracentesis, which drained 240 ml of malignant fluid out of my chest cavity. It was much less scary than it sounded, though I had to go for the procedure twice since they told me you can take blood thinners the night before (you can’t). Reminder to self - if you are being given instructions over the phone about an upcoming surgical procedure and they sound incorrect, question them. Don’t become self-conscious about second guessing instructions too much.

The upside of having malignant fluid drained from my body was that I was able to ship it to Colorado and donate it to the ROS1 project, so they can grow cell lines for research. Precious fluid!

Another pothole in the pavement.

Also meanwhile . . .

My tumor markers continue to rise, so who knows what is going on, except that likely trouble is brewing somewhere.

Bump bump bump.

I recently read The Miraculous Journey of Edward Tulane, and it is hard not to feel grateful for what you have after reading that.

"Edward knew what it was like to say over and over again the names of those you had left behind. He knew what it was like to miss someone. And so he listened. And in his listening, his heart opened wide and then wider still."

"But in truth,' said Bull, 'we are going nowhere. That my friend, is the irony of our constant movement."

If you haven’t read that book, do yourself a favor and check it out. The world feels a little bit more doable afterward.

"If you have no intention of loving or being loved, then the whole journey is pointless."

I couldn’t resist that last one.


Bridgit said...

The last quote is wonderful. I’m sorry for all the bumps in the road you’re facing, and I’m so very glad you’re still facing them. And that you are sharing your journey with us. I’m grateful for you. And sending you prayers and love.

magzilla said...

Just an echo of Bridgit's comment. I'm sorry for everything you're going through but was SO THRILLED to get this in my inbox.

I noticed some balance issues about 3 months after my second round of brain radiosurgery - immediately after I lost the hair in that area. Yoga seems to be helping a bit - and also making my struggles more obvious when I immediately fall over during every one-legged pose and wobble around for the two-legged poses. Sitting poses, on the other hand, are my jam.

The rising tumor markers are a bitch and a bummer. Mine have always seemed to correlate with tumor size. I'm keen to see what happens there.

I'm so grateful that your pleural effusion fluid can go to good use helping the rest of us. Thank you for being the pioneer, beacon of hope, and inspiration for ROS1ders everywhere!

Finally, I haven't even mentioned this on my blog yet but my scan 2 weeks ago showed "complete remission" one year after my diagnosis. The only change I made since the previous scan was to add the Care Oncology Clinic Metabolic Protocol to my lorlatinib (and to reduce lorlatinib due to cognitive and liver side effects). I don't know if you're able to do two trials at once... I imagine not... but it may be worth looking into.

Much love, light, and thoughts of healing your way!