Chapter 19: One down, ____ to go!

As of Sunday I finished one month’s worth of the Crizotinib drug. I have an indefinite number of months to go depending on how much and how fast Benedict shrivels up into a tiny little raisin. Then I will have surgery–whenever that point is.

It’s been a little interesting but overall a good ride. I’m feeling worlds different than I did one month ago. It’s kind of hard to believe that two months ago I collapsed and was taken to the hospital because I had no energy to walk. Three months ago I was settling in for surgery. Four months ago I was battling the start of the “decline” with daily fever, night sweats, and tons of weight loss. Five months ago I was starting the wretched candida diet. Six months ago I was diagnosed with candida esophagitis. Seven months ago I had started to feel kind of sick, but couldn’t quite put my finger on what was sick. And eight months ago I was completely oblivious as to what was about to hit me. Whew. What a ride.

Someone asked me the other day if I feel like I’ve been through a battle. Sort of. Honestly, it feels more like the time between February and now is a complete blur—and a time and feelings I never want to return to again. I look at my planner, facebook feed, and even this blog and think those times feel so long ago, as if they were part of a different lifetime. No regrets though, because they have really springboarded me into a new “Carpe Diem” mindset. I am not sure there are many people who go through something like this and don’t acquire that mindset if they didn’t already have it before.

It’s finally starting to feel a little more fall-ish here in Georgia. I’ve been making a point to get outside every day that it’s not raining (and I still go some days when it is), cook some fun recipes, and do a little bit of DIY and crafting. Art class was phenomenal and I can’t wait to take advanced calligraphy starting in a few weeks. It was the fastest way to pass 5 hours, that’s for sure. And it was completely meditative. So much so that I was sorely disappointed when time was up and it was time to leave.

I was really moved by my neighbor in the class. A man walked in using a cane and had a tremor in his hand. My initial thought, being a PT who analyzes movement for a living, was Parkinson’s. Bummer. When he stood up to get water for his watercolors, I saw him lose his balance and catch himself on the door frame. Yikes. I did that thing that I know every other PT in the world does when you see someone start to fall–my muscles jumped to attention and I prepared to catch him, even though I was across the room. What ensued after that moment, perhaps, was a proverbial version of me actually catching him.

We then all introduced ourselves to the class and said what it is we do. This naturally prompted several inquiries back to me from others asking “what this pain in my knee means” or people telling me their own “PT saga.” Happens every time. But it was what came several moments later, once the class quieted down and returned to their drawing, that really moved me.

The man, now sitting next to me again, leaned over and said “Hey, where would someone go for PT, say if they had something like, oh I don’t know…ALS?”

My heart sank.

That’s just not something you hear every day from a total stranger.

I really hope I kept my game face on, because my insides were curdling. I’m complaining about my hair falling out and my face being puffy. I don’t have any problems at all!

Ok fine, let’s be serious. I have problems too. But suddenly I felt humbled and honored by the fact that my problems have a good prognosis and a potential cure.

I work in sports medicine and orthopaedics. The vast majority of my patients are young, active, and healthy. Walking is generally easy to come by for most of them. In fact, usually the issue is not being able to do a sport. I remember going through my PT internships and falling completely in love with the neurological rehabilitation setting (yes, maybe even more than sports medicine), but my heart could never be still working there. It broke on a daily basis. I applaud my friends and colleagues that work there and tell them that often because even though it was perhaps what I was best at, I don’t think I would have lasted long.

Flashback to those same feelings.

So after pretending to think about an answer, I gave him the names of several great programs in the Atlanta area, including a personal recommendation to a friend of mine, who I texted from class to make sure it was an OK fit for him. Even though I already knew and had acted on the answer to this question, I lowered my voice and asked “So, is that something that you are dealing with personally?” He smiled, looked around to see if anyone else was listening, and said “Yes.” I asked when he was diagnosed and he told me he noticed symptoms 3 year ago and was diagnosed almost a year ago.

For anyone who watched the Ice Bucket Challenge videos and was curious to learn more about the cause for which you and your loved ones were dumping ice water on your heads, this is that cause. ALS is a degenerative neurological disorder where the person more or less loses his or her ability to move and function in sometimes a very rapid time frame. So, for my new friend to have made it 3 years from the onset of symptoms, this was awesome. I was beaming with pride for this man I’d just met.

This is where it gets good. He then told me that he still works full time, exercises every day, and decided to take art classes because it was something he could do sitting down (he tires easily) and a way to keep his fine motor skills up. It’s the little things we take for granted every day, isn’t it?

Needless to say, I was not just proud, but immensely inspired by my new friend. And of course sad for him because well, he did feel like a new friend. He would leave the class early because he was too tired to stay. He later emailed me thanking me profusely for taking the time to find him a personal referral and for asking him about his condition without making him feel alienated.

I guess sometimes it pays to be in the same shoes, but with a different condition.

A few days later I would learn about my friend’s sister who had just been admitted to Northside for leukemia at 23 weeks pregnancy. Holy medical issues, Batman! Cue sinking heart, again. She’s dealing with it like a champ and is so inspiring with her strength and courage. She’s in great hands and will be cared for by the best team. Her family and friends started a facebook page for her and it is now full of thousands of friends and strangers staying updated on her case.

I appreciate you all keeping me in your thoughts and prayers. If you could add these two folks to your think tanks, that would be wonderful too. It’s not my goal to make myself feel better, more inspired, or less “afflicted” by comparing my situation to others’ issues. I think what I gained from the universe throwing these two situations at me in a short timeframe was 1) Reminders that everything really does happen in threes 2) Reminders that even though our situations are different, everyone going through something like this has a village behind them and what a blessing that is 3) How important it really is to seize the day.

So I’m going to go and do that. Hopefully you will too! 🙂

And PS: This Friday I have a follow-up with the oncologist. We’ll be taking the first “look” at Benedict since we started squashing him. Normally we’d do this at 2 months with a CT scan, but she was so excited I was feeling better 3 weeks ago that she decided she wanted to get an x-ray just to see. We aren’t overly optimistic that we’ll see much change compared to the last x-ray I had in August, but at least we can see if my ribs have healed and maybe see the tears falling from Benedict’s face 😀

Spoiler alert: all of my Halloween wishes came true in Chapter 20!

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