Month: January 2014

Gimme a beat, it’s time to happy dance!

/ Jen / Leave a comment

Had my surgical follow up appointment today at Mayo and everything looks good! Dr. Chen said my eye is healing up really well. There were two sutures that hadn’t dissolved, so of course I promptly began to squirm in anticipation of having him remove them, and questioned him twice as to whether or not he had used enough numbing drops. It actually turned out to be a case of the anticipation being worse than the event, because it really wasn’t a big deal. It’s just hard to calm down and find your happy place when someone is coming at your eyeball with tweezers. He couldn’t get the second one because it’s “buried” in my eye (goodbye, happy place!), but said it was fine to leave it there (whew!). I didn’t ask but I assume that it will either dissolve eventually or be easier to get later on.

I asked him about the floaters that have appeared this past week (more on those later), and he said it was probably a result of the radiation. He got out another 5 million watt light, checked things again and said that he did see some blood around the edge of the tumor, and that could be the cause of the floaters. And why am I excited about blood around the edge of my tumor, you ask? (Ok you didn’t ask, but pretend that you did) I’m excited because he said that in his observation, it looked like the tumor might be starting to contract! Can I get a “Hallelujah” from someone?!? Yeah, cue the music, this girl’s doing a happy dance! I’ll take a “might be” any day – because “might be contracting” means it is definitely not growing, and that is very good.

He also said I could throw away the eye patch that I’ve been wearing to bed every night since the second surgery (I might burn it…), stop using the eye goop and…. no more activity restrictions! Woohoo!!! Gimme something heavy to lift!

Rich and I like Dr. Chen a lot (and not just because he was the bearer of good news, although it probably made us like him a little more). We were immediately impressed with his calm, confident air when he saw me during my hospital stay. It’s really hard to put my finger on it exactly – he’s really likable and accessible, yet completely professional, and just gives you the feeling that he totally knows his stuff. And today, like Dr. Pulido, he sat there patiently and answered every single question we had (and I had a lot).

So barring any unexpected complications, I will not be returning to Mayo for another 3 months. That’ll be a scary one, because it’s a ton of scans and tests and such, but doing that every few months is going to be my new normal, so I’m going to have to find a way to make it work. But that’s down the road, so I’ll work on that later. Right now, I’m busy with my happy dance…

This past week brought some major improvements to my eye, especially cosmetically. While it certainly doesn’t look normal, it doesn’t look infectious and it doesn’t look like my husband beats me, so that’s a significant improvement. The white of my eye is taking on a lighter pink hue and approaching – dare I say it? – white. My lid is still a bit swollen and droopy, but one nice thing about wearing glasses is that you can’t see the eye as well, so it’s not as noticeable. Oh, and my eyelashes are starting to grow back! Oh happy day!

My trouble with looking at computer screens lasted only about a week (but oh, that was a painful week. I’m glad that’s over.). The new thing that surfaced last week was the appearance of floaters. In addition to some big fuzzy suckers randomly sailing by my line of sight, I started seeing what initially looked like bugs. No seriously, the multiple black specks, when seen in my peripheral vision looked exactly like bugs scurrying along my dinner plate, my desk, my bathroom counter – it was unnerving to say the least until I got used to it. Still have ’em, but now they’re a reminder that my tumor could already be responding to the radiation, so I don’t mind them quite so much :).

I followed up my day at Mayo with a music rehearsal for “Godspell”, so it’s been a thoroughly wonderful day. Oh – and I made a vegan taco salad that my family actually really liked! Victory! Yeah, the vegan thing – that’s probably material for a future post. Starting the first of the year I made a major change to my diet, in hopes of making my body less hospitable to cancer. Trying to eat more vegan, more organic, less processed, less sugar, less caffeine… it actually hasn’t been as hard as I feared, it’s just time consuming and labor intensive learning a new way of eating. Yes, it’s definitely material for a separate journal entry, because while there have been lots of successes with it, the failures have been pretty funny and definitely need to be shared.

Thanks again for walking this journey with us. It’s an absolute delight to share the high’s with you, and an incredible comfort to share the low’s. We are so grateful for your presence with us on this path, whatever the terrain. It’s incredibly humbling and profoundly wonderful.

Now to resume that happy dance…

A fan of Ann, some gratitude journalling and in praise of birthdays

/ Jen / Leave a comment

Hi! Sorry it’s been a little while since the last entry, but 1, not much has been happening on the battlefront and 2, looking at a computer gives me a headache.

First off, let me say that my eye looks a LOT better this week. As one friend exclaimed upon seeing me, “Jen! You look normal!” Thank you. I don’t know that I’ve ever been called normal, so that’s cool. It’s still very obvious to look at me that there is something funky with my eye. It’s puffy, the lid is droopy and my eyeball is red (but not demon-like red like before, so I’ll call that progress). No, not quite normal, but much better, so I’ll take it. I was allowed to stop using the dilating drops on Monday, and those suckers burn going in, so it’s been nice to ditch that. It still took a few days to lose the startled lemur look in that eye, but now I think it’s looking better. As for the headaches, I’ve had some doozies this week, probably adjusting to the lack of dilation in the eye (maybe? Just a guess). I have had some double vision, but nothing too severe so far. And for whatever reason, looking at a computer screen gives me major eyestrain and headaches, but my iPad, phone, books and magazines aren’t nearly as hard to look at. Go figure.

I’m scheduled for my followup at Mayo on the 20th of this month. Apparently this was a tricky thing to get scheduled because my oncologist is only in the office for two days this month and those days just happen to fall during a trip I’m taking with Rich at the end of the month. Seriously, I will be gone for two business days, that’s it, but those are the days the doctor could see me. So, I’m seeing Dr. Chen, who is… I don’t know his exact title, so I don’t want to offend… Assistant? Associate? Fellow? Right hand dude? Whatever, I’ve met him and I like him, and he’s the one who did my second surgery since my main guy had scooted off to Miami by then. He’s totally competent I’m sure, but I’m still a little disappointed I won’t be seeing Dr. Pulido. Of course, I’m hoping there will be no complications and it’ll be a quick visit, so it probably won’t matter who I see.

So that’s the info for this week. As always, you can stop reading now if you were just checking on how things are progressing and all the other “newsworthy” type stuff. This is the part where I ramble about things, and if you don’t want to read it, I’m not hurt. Really, it’s cool that you were checking in on me. I appreciate it!

And now for some rambling…

Kind of a silly thing, really – I changed what side I part my hair on. I know, I know, this is not a big deal. People do it all the time, but I have parted my hair on the same side ever since the 80’s when I dutifully parted it in the middle (more height). But as I was walking into the salon to get my hair cut last week, the wind blew a big chunk of hair over my good eye and I couldn’t see. It was a little startling, really. But it got me thinking – if I’m going to lose even more sight in my bad eye, then I should really give my good eye as much of an unobstructed view of the world as I can. I walked into the salon and told my hair stylist, “I think we need to change what side I part my hair on.” She of course did not think this is a big deal. Because let’s be honest – it’s not. However, retraining my hair to go in the totally opposite direction this week has been tedious. I am constantly moving hair out of my face in a frustrated huff because the hair really wants to be aimed a different way. And I think, “Darn you, cancer. You made me change my part.”

Fine. Cancer 1, Jen 0. But I’m getting one back tomorrow – tomorrow we are holding auditions for “Godspell,” which I am directing. I am super excited to do this show. I’ve choreographed it twice, but never directed, and I can’t wait. So take that, cancer. I’m doing what I love anyway, and you can’t stop me.

You know what else I’m excited about? My health insurance. Nope, that’s not a typo, or even a double vision induced goof. It’s totally true, but really, when do you ever hear a cancer patient say that? Not a lot I figured, which is why I’m giving a little shout out to Health Partners and especially an extremely sweet, hard working woman there named Ann. She is working her tail off to get all of my Mayo bills covered, and I know this is not how things normally go. Usually it’s the patient making all the phone calls, dealing with all the jerks and the red tape, fighting every denied claim and having to advocate for themselves when no one else will. But I don’t have to, because I have Ann. She does that for me, which is such a relief. Because I have other important things to concentrate on. Like changing how I part my hair.

And really, I just have to say that with the exception of my diagnosis, things have gone extremely well for us. I’m not trying to be glib or anything – don’t get me wrong, getting cancer stinks. It’s awful and painful and scary, but we have been blessed in that we haven’t had to deal with anything else on top of that. Our health insurance is great, our friends, family and faith community have been amazing, the kids’ teachers have been incredibly understanding and gracious and Rich’s company has been so supportive it makes me cry. When Rich traveled for business this week, friends helped with grocery shopping, laundry bin hauling and dog walking (in frigid temps – thanks Jeannine!). Yes, cancer has been a tough thing to deal with, but there has been nothing compounding it, and I am acutely aware of what a rare thing that is.

Ok, I was going to write more, but my computer time is limited with my eyesight right now – I’ve already left and come back a few times, so I’m going to wrap things up. One final thought though…

Tomorrow is my birthday, and I just have to say that it’s really amazing what having cancer does to your perspective on aging. It wasn’t long ago that I had a very negative attitude toward getting older – it was something to resist, to mourn, to dread even. Now, I think aging is great. Getting older is a goal, something to be celebrated. After all, it’s a privilege that is not afforded to everyone. Tomorrow, I get to turn 43. I was previously thoroughly unenthused about this, but it’s odd how the threat of not having birthdays anymore can make you appreciate them. Even the weird, odd numbered ones that are so meaningless that you sometimes have to do the math to figure out how old you are. Even those ones.

I get to have another birthday tomorrow. And that is very, very cool.

The day I (almost) lost it

/ Jen / Leave a comment

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.