Ok, before I even start let me offer my humble apologies for taking so long to post on here. Not a whole lot is going on right now, so I forget to post, but of course unless you see me regularly you don’t know that. It means the world to us that so many people are traveling this journey with us, and I went and left most of you stranded at a rest stop. Not cool! So, without further ado, I offer you le update du jour…
When people talk to me these days they usually ask one of the following questions:
1. How are you feeling?
2. How is your vision?
3. When is your next appointment? And, my personal favorite…
4. Which eye is it?
Yep, I’ve got to go in reverse order here because as vain as it sounds, I am VERY pleased about that last one. My eyelid is just a tiny bit droopy, and the eyeball is maybe a touch bloodshot, but with my glasses on and my wayward hair hanging over half my face (that darned part switch is still making me look like a sheepdog), it’s really hard to tell that anything is wrong. My eyelashes are growing back nicely and soon I’ll even be able to hit them with some mascara – is it weird to say I’ve missed mascara? Mostly though, it’s just nice to walk around in the world and not have something obviously wrong with me. And I must say, I can now do a pretty good impersonation of someone who doesn’t have cancer. I like that.
Continuing out of order with the questions, my next appointment is actually over the course of 2 days: April 29th and 30th. My experience getting all of this scheduled was decidedly negative, but I’ll come back to that. The answers to the above questions are very positive, so I’m staying with that trend at least for the moment.
My vision is probably a little worse than the last time I posted, but I’m adapting to it better, so it feels the same. I still have the floaters – both the big squishy things in the center and the kaleidoscope of “bugs” in the periphery, but as I said I’m getting used to it. I still get fooled into thinking there’s a bird flying overhead or a bug on my plate at times, but it’s not a problem – except I’ve realized that sometimes my eyes dart around to follow these distractions when I’m talking to people. It probably makes me seem very rude or disinterested (note to self: ignore the bugs when talking to people). The other thing that probably will cause some social awkwardness (and most likely already has) is that with only one eye seeing well, I tend not to recognize people if they walk by towards my left. So truly, if you saw me at the grocery and I didn’t say hi, you were probably where I couldn’t make out your face. Or maybe I just hadn’t showered yet and was hiding from you. That’s a possibility too. The only other challenge with the vision changes has to do with depth perception. It’s not terrible, but I do keep scraping the backs of my hands when I reach under a shelf, for example, only to find that neither the shelf nor my hand are where I thought they were in space. It’s not a big deal, and I’m sure I’ll get used to it. Upon hearing this, a girlfriend asked, “How’s your driving?” I really think it’s fine. I haven’t backed into anything or hit the garage pulling the car in (which are both things I did when I had 20/20 vision), so it’s all good.
And the question that I get the most: how am I feeling. Actually I feel just fine. Unlike chemo or typical radiation, I really haven’t had to deal with a lot of side effects from my treatment, aside from the vision stuff. As near as I can tell, anyway. The month of activity restrictions meant that coming back to regular exercise was a challenge, so if you saw me walking weird it wasn’t the cancer treatment, it was my aching, out of shape body. And as a side note, the month off confirmed what I had suspected all along – that regular exercise, especially yoga, is a key part of keeping my hip flexible, strong and functioning normally (for those who don’t know, I had a hip replacement almost 2 years ago. But that’s another blog…). So keep moving, people. Your joints, real or otherwise, will thank you.
So back to the stuff with Mayo. Long story short, the ophthalmology department likes to play gatekeeper with my doctor and his assistant, so if I have any questions or concerns I’m generally stuck with some overworked, crabby lady in ophthalmology scheduling. Last week’s crabby lady informed me dismissively that since my doctor is the only eye tumor specialist in the Midwest, he has more patients than he can handle and therefore just can’t keep track of all his patients. Seriously, she said that. Now, to her credit, I’m sure she’s used to dealing with old people with cataracts, not nervous cancer patients, but it definitely had me rattled. And I’m not being scheduled for some things that my doctor had said that I would be, but since I can’t get a hold of his assistant, I don’t know why. Which has me wondering if the crabby lady was right and I’m in an overburdened system that just can’t keep track of me. It was discouraging to say the least, and Rich had to spend a considerable amount of time calming me down that day. I’m not freaking out anymore, but I won’t say I feel totally peaceful about it either. I’m sure I’ll feel better when I finally get to talk to the doctor face to face in April.
The good news is I have plenty of things to keep me busy and distracted until then. Godspell rehearsals are going well, and I’m so thrilled with my cast. Super cool people, and ridiculously talented. Tessa’s about to start dance competition season, which means I’m furiously gluing rhinestones on her solo costume every spare second I get. Seriously, it looks like Swarovski threw up on my dining room table right now. Riley is looking at colleges and getting ready for his trip to Europe with the French and Spanish departments over spring break. A lot is going on in our household, and it’s all very normal stuff, which is very, very nice.
I got the chance to speak about my cancer experience a little at church this weekend, and that was cool. It was hard, don’t get me wrong, but sharing some of the things that have helped me through this thing (and continue to help) was a powerful reminder of all the good we’ve experienced during this challenging time. Cancer stinks, but I have amazing friends and family, and a God who amazes me daily.
I’m going to end for now, but I promise I won’t wait another month to post again. We appreciate that you are thinking of us, praying for us and sending so much love our way! It makes such a difference. 😊