Hey there! Been busy since my feet hit Lakeville soil again (or rather Lakeville snow), but I always know it’s time for another update when I start getting the emails and texts: “soooooo, how are you??”
So how am I? Physically, pretty good. The eye got a lot better for the first couple days I was home, but hasn’t changed much since then. The swelling has gone down enough that it’s mostly open, so I’m starting to lose that permanent Gilbert Gottfried squint. It’s still puffy and really red, and thanks to my thrice daily “goop” applications, it’s always a bit greasy looking. Actually, it looks a lot like I have pink eye – complete with nasty yellow crusty stuff – so you can imagine the vast amount of personal space I’m getting when I go out in public. I’m getting used to wearing the patch at night, and so far I haven’t accidentally waxed an eyebrow removing the tape in the morning. My vision in that eye is super blurry, and it’s hard to say how much of that is the aforementioned goop and how much is surgery, radiation, etc. I get headaches when I do too much reading, as my eyes are still trying very hard to work together, even though the slacker eye isn’t helping much. But, the tradeoff is that the depth perception is a lot better now that the other eye can at least see shapes and stuff.
So that’s the physical stuff. You can skip the rest if you don’t want to hear about my mental state (seriously, I won’t know, it’s ok). Mentally and emotionally, I have been all over the map. Some days I feel incredibly strong and hopeful and even confident, and other days I get ambushed by the “Holy crap, I have cancer! I could actually die!” fears. And those fears have a kung fu grip when they come. Take, for instance, yesterday.
I started out with the best of intentions. I decided I would seek out the support of fellow OM peeps and educate myself by joining the patient forum on the Ocular Melanoma Foundation website. I got on, started to poke around and… panicked. Everything I read made me second guess all of the choices we’ve made, question my doctors, my treatment, my prognosis. Heart racing, hands shaking, stomach twisting, I started reading over my scan results and reports. I googled terms, searched them in the forum discussions, and worked myself into a good old fashioned panic attack. I really did mean well, I tell you! I was looking for support, information, something to ease my mind and my spirit. What I got, however, was the fear with the kung fu grip. And that’s when I learned a very important lesson: there is a very fine line between being an informed patient and an obsessed patient…and a paranoid, freaked out mess.
But here’s where it gets better, and where I learned another important lesson: use your resources. I started thinking about everything and everyone that could help me, and with the tiny bit of strength that I had left, I closed my iPad, put away my medical file and notebook that I had been feverishly writing in. I got out my new, beautiful prayer shawl (thanks Jay!), my scripture book written just for me (thanks Steph!) and started reading and praying (THANKS GOD!). Then I pulled up the email address of my friend’s mother-in-law, who also has OM, and sent her an email (thanks Kerry!). She called me immediately (thanks Brenda!) and sweetly calmed me by sharing her story – and the fact that she’s almost 10 years out from her diagnosis and very much alive. She has the same oncologist I do, and she’s been pleased with her care from both him and from Mayo. Before saying goodbye, she admonished me, “Now this is what’s critical…” Oh no. That’s how this whole panic attack started – people on the forum saying it was critical that you do this, don’t do that, have this test, go to this specialist (or you’ll die!)…my stomach tightened, I braced myself. She continued, “What’s critical is that you live your life. Enjoy your family.” Yeah…. I mean, YEAH! I can do that. I will do that. No sooner had I hung up the phone than our neighbor Linda called to ask if she could bring dinner this week. Later I got to talk to my sweet parents while I walked (slowly, don’t worry) on the treadmill. And just like that, my super crappy day was a darn fine day. Darn. Fine.
So I’m learning. I’m learning that sometimes wriggling out of fear’s vice-like grip is as simple as turning off the iPad. And that hope is a choice that you have to make every day – sometimes multiple times on the tough days.
Most of all though, it’s on the crappy days, the tough ones where it’s hard to make that choice to hope, that I need to turn to my resources. Because I have them. I have a LOT of them, in fact.
I am very, very blessed. Thanks to all of you for being my resources, for lifting me and my family up in prayer, sending positive thoughts, good juju, whatever – I feel it all, and I am grateful.