My magnetic personality?

Hey everyone! Sorry I haven’t posted anything. I really did intend to give a little “I’m doing great!” shout-out once a month, since that’s about when I start receiving worried emails and texts from folks, but life has been crazy busy (in a fun way), and there really hasn’t been anything to report. And that’s really the rule of thumb here: no news is good news. If you don’t hear from me, that’s a very good thing. It means I’m busy living and enjoying life!

Up until a few days ago, there was really nothing to update you on, aside from some more FAQ’s and random observations on living with cancer. The new plot twist actuall

My first half marathon post hip surgery

My first half marathon post hip surgery

y has to do with my hip (and if you’re Facebook friends with me, you’ve heard this, so you can skip to the next paragraph if you want. Totally legal). As most of you know, I had my hip replaced just a little over two years ago, a hip resurfacing surgery, to be exact. The bionic life has been glorious – no pain, great range of motion, and after a year I was allowed to start running again. Most of you also know how important running is to me – I’ve run 29 marathons, that’s how much I love to run. It’s more than exercise, it’s therapy, creative thought time, alone time or social time, time to challenge myself or time to relax and enjoy the scenery. I love meeting people at races, reading the funny signs that spectators hold up, high-fiving little kids on the route, and I love, love, LOVE finish lines. I have been so very grateful to have all that back in my life, courtesy of my oh-so-awesome bionic hip. So it was a bit of a shock last week when, in the middle of a college visit with Riley, I got a call from my orthopedist’s assistant. Apparently routine blood work revealed that my metal levels are “off the charts.” This is something that can occur in people with metal on metal implants, but it is rare (ah, but getting rare things is my specialty! Rich says I should play the lottery.). My X-rays at my two-year checkup were great, and my hip feels awesome, so the doctors are scratching their heads on this, because it doesn’t add up. So, I’m having an MRI on Monday (it’s been over 2 months since I was last stuffed in a tube. I was starting to miss it…). If they see any evidence that the metal is wearing or that my body isn’t tolerating it, I have to swap out my awesome, running-friendly hip for a traditional, no-running-allowed hip. Oh yeah, and have major surgery and all the recovery and PT that comes with that. Not cool. But the flip side of it is the possibility that my hip will look fine, and then we have to figure out why I am so overly metallic. I mean, I’m totally cool with just avoiding magnets for the rest of my life, but when you add in the cancer thing, that could be a game changer. Of course, who knows, maybe my radiation treatment is what is causing my excessive metal-ness in the first place. Anyway, I’ve been told to stop running for now, get the MRI and we’ll go from there. I will, of course, update you all if there’s anything happening. If, however, it’s determined that I’m a medical mystery I might be too busy banging my head against a wall to post anything.

So, enough of that. On to cancer updates – I mean, that’s what we’re all here for, right? The short answer is I’m doing very well. Thank you, good night.

Ok, if you want more, I will give you a few FAQ’s, for your enjoyment:

1. “How are you feeling?”
I’m feeling fine. Really. It’s a weird thing to have cancer and yet feel completely healthy, but I haven’t had chemo and all that goes with that, and my radiation was so specifically targeted at my eye that the only side effects from that are limited to my eye (unless, of course, we find out it’s responsible for my metal levels).

2.”How is your eye?”
Not too bad. My vision is definitely getting progressively worse, but it’s happening so slowly that I barely notice the changes. I’m still getting used to limited peripheral vision on my left, and I have multiple bruises on the left side of my body to prove it. I’ll figure it out eventually. My eye does get dry, itchy and/or irritated sometimes, but I think the doctor said he can get me eye drops for that.

3.”When are your next scans?”
September 29th. Same exact stuff I had in April, and hopefully with the same results – no, better results. We want to hear that the tumor is shrinking in ALL directions. Personally, I’d like to hear that it shriveled up and died, but they said it’s too early for that. But a girl can hope, right?

So that’s the scoop for now. Summer has been grand, and as long as I can avoid more surgery it will continue to be grand. Full of soccer games (Riley’s team made it to state!), college visits (seriously. Don’t ask where the time went) and tons of dance (Tessa, not me. She made the high school dance team and it will apparently be our life for the next 8 months or so. She is, of course, loving every second). And I am loving every second too. It’s a grand thing to be alive, especially at this crazy busy time in the kids’ lives. I love that I have a front row seat for all of it, and amazing family and friends by my side. Thank you all for always lifting my spirits, encouraging me and making me laugh.

She’s baaaaaack….

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. 😊

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

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

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

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.

The scoop

Ok this is going to be a long sucker, so go get a snack or something to eat while you read. Or, just skip all the paragraphs where I describe my panic attacks and profuse sweating and go to the end where I talk about actual stuff. Seriously, it’s ok. I won’t be hurt.

So here’s the scoop from yesterday that I was just too fried to type out (thanks for your patience, by the way!)…

The day started ridiculously early (Rich actually walked the dogs at 4:30) because my first appointment was at 6:50. Chest CT, piece of cake (and they didn’t have to inject that contrast dye that makes you feel like you peed yourself. Nice). Had a small break after so we grabbed coffee and breakfast. I don’t even know why I wasted the money on the oatmeal. I mean seriously? Too nervous to eat. But we got out our iPads and did some Christmas shopping to distract ourselves. Then up to opthamology for another 5 billion pictures of my eyes. The second I got there, my nervousness turned to full-on panic. I mean this was it – after all of our waiting, we had just some pictures and an ultrasound standing between us and the oncologist and…answers. And to make it worse, it lasted f-o-r-e-v-e-r. Everything took longer than we thought, and then just when we thought we were set to finally meet him, we were told that he wanted more pictures. More pictures?? Why? Hadn’t my eye already been thoroughly documented at this point? Nope, we did a set of infrared pictures. By the way, all of these pictures basically involve getting dilated and then being told to look in a direction that is so severe it feels like you’re going to pull an eye muscle, while a blinding light is aimed directly at your defenseless, dilated pupil. And you can’t blink. Oh, and the ultrasound was kind of creepy – the guy actually put the thing on my eyeball, along with all that goopy gel they use for ultrasounds. He put a bazillion numbing drops in first so I couldn’t feel it touching my eye, but I could feel how hard he was pushing. By the time we got home last night the drops had worn off and I felt like I’d been punched in the eye. But I digress…

We were finally called into an exam room to meet the doctor. And then I remembered: he’s a Big Shot, and Big Shots always have fellows training under them, and the fellows always go first. So instead of getting answers, we did what by now we’ve gotten very used to doing – we sat with racing hearts and sweaty palms and studied the guy’s face for any kind of reaction as he read my records and charts. He then did the longest eye exam I’ve had in my life, while I said scripture in my head and tried to breathe. He even left to get colored pencils so he could draw a picture of my eye. For real. It’s the Mayo Clinic, and I have just had zillions of pictures taken of my eye, using every kind of state of the art machinery, and he’s drawing a picture. It would have been amusing if we weren’t totally dying inside. But then as he was finishing and putting all the papers back into my folder, he glanced at one and remarked casually, “I see you already had your CT’s and MRI. Nice to have those done and looking good.” And before we could really make sense of it, he was gone. “He said they look good!” Rich whispered as the door closed. I just nodded. I wasn’t sure – good, like good quality, or like the news we had been waiting a week to hear?

They moved us to the room next door, which looked exactly the same as the room we were in. I have no idea why, except maybe they noticed the puddle of sweat on the exam chair and decided I needed a dry one. At any rate, Dr. Pulido finally entered the room, a jaunty looking man with funky glasses, a Christmas tie and bright blue and red dress socks. For the entire time he was with us, we had the feeling that he had nowhere else to be that day, that he was prepared to talk to us for as long as we needed. He told us what he knew, what he thought about various things, and answered every one of our questions. An incredibly kind man, with a sweet smile and a gentle way about him. Don’t get me wrong – he made it clear the second he stepped into the room that this was very serious. It wasn’t a happy appointment by any stretch of the imagination, but we immediately felt like we were in good hands. He put us at ease with the CT and MRI results quickly. Apparently I have multiple pulmonary nodules. He turned to me and looked me in the eye. “People get those. Don’t worry about it.” Ok. Next, there was a cyst on my liver. “People get those too. Don’t worry about that.” Ok, this is good. This is very good. And then the bad news: we can’t do the biopsy. If you really want the nitty gritty on that let me know and I’ll discuss it in a future post, but suffice it say, we are not going to be able to find out if I have class 1 or class 2. Very disappointing, to say the least. But, he also said that he doesn’t treat patients with class 1 and 2 any differently. We all get the same monitoring. The other thing he said that was reassuring was that they are making great strides in treating metastic ocular melanoma. He listed off a slew of drugs that have just recently been approved for use. And while there currently isn’t any prophylactic pill that they can give to class 2 patients, they’re getting really good at slowing the progression down. He told me that I am in better shape getting this now than even 3 years ago, that’s how fast things are improving. So basically, if I do have class 2, it’s possible that it won’t metastasize for a bunch of years, and by then who knows what treatments they’ll have in their arsenal.

And speaking of spread, the tumor is doing exactly that (there has been “retinal invasion”), so we have to move fast. That’s apparently why I jumped to the front of the surgery line – the sooner we get that plaque in, the better. And it takes a minimum of 7 days to make a plaque, so by doing the surgery next Wednesday we’re treating it as soon as possible.

Then we talked about my vision. Which was odd, because we just haven’t thought about that much. I mean, since this whole thing started we’ve been focused on saving my life, not what it was going to do to my eyesight. But Dr. Pulido handed me a prescription. “It’s for glasses with polycarbonate lenses. You need to get them now.” he said, and then explained: I’m going to have significant vision loss in my affected eye (from the radiation), so suddenly my other eye becomes very precious. As such, I will have to wear glasses every waking hour to protect it, and wear safety goggles any time I do yard work. The interesting thing is, the radiation will take a pretty long time to destroy my eyesight. It won’t happen immediately, just gradually over a period of 1 1/2 – 2 years. So my girlfriend Jeannine came with me today to pick out a sassy pair of specs. I don’t wear glasses so it’s going to take some getting used to, but it’s fine.

So the plan is to be in the hospital – St. Mary’s in Rochester (run by Mayo) – from Dec 18-23. After I’m released, I’ll only have to wear an eye patch at night (to protect me from poking myself). I won’t be allowed to exercise for a month (this is going to be very hard, I can already tell you that) so as not to put any strain on the eye. My eye will look “mealy” for a while and I will probably have double vision for a few weeks. I’ll also have a droopy eyelid, and this may or may not get better. If it’s still drooping in March, I’ll need to get a lid lift if it’s bugging me. I’ll go back a month after my surgery to see how the stitches are dissolving, and see if the tumor is shrinking. 3 months after that I’ll have more scans, but just of my liver. And if everything is looking cool, I’ll go onto a maintenance schedule of scans every 3-6 months.

So I think that’s the scoop on our day yesterday. I’m sure I’ve forgotten something, but this post is already way too long, so I’m going to have to cut it. I’ll talk about more stuff in future posts. They’re mostly f words (no, not that f word): faith, fear, friends, family and the future come to mind. I’ve got some stories about the incredible support we’ve received that I can’t wait to share with you. But I’m still pretty disorganized in my head, and I know I’m missing things here and there, so if you have any questions or think of anything you’d like me to cover here, just let me know.

Bet you finished your snack by now, so I’ll stop yapping. Until the next post…

On our way to Mayo

So if I can do this without getting totally carsick, I’m going to try to do a journal entry while Rich drives us to Rochester for our first day at Mayo. Today should be pretty easy: blood work, something called “computer”, and a ton of pictures of my eye, including a fluorescein angiogram. I had that last week – they shoot you up with dye and then put an industrial strength flashbulb one inch from your eye and flash it at you while you look various directions. Not enjoyable, but not hard either.

For those of you not on Facebook with me, I had tests done last week to see if the cancer has spread. At this point I’m not expecting to get my results until Wednesday when I see my oncologist. I’m not happy about waiting, but it doesn’t look like I have a choice.

Ok, ok, I’ll try to do the backstory now… This came completely out of the blue. Would it be inappropriate to say it blindsided me? Well anyway, I noticed about a week and a half ago that I had this weird shimmery effect in the periphery of my left eye. Then, the next night when I was lying in bed, I noticed a small shadow in my vision. The next day I looked it up on google, and after brushing off ocular melanoma, saw detached retina as a possibility. Now, my mom has had a retina tear, so I decided I’d better get in to the doctor in case I had that. That is the only reason I went in, because the symptoms really weren’t all that bad. The ophthalmologist examined me and was very quiet. When he finished he said, “I’m going to take some notes, and then I’m going to talk to you.” My heart sank a little. I knew something wasn’t good. He turned to me, and as gently as possible said, “There’s a mass.” He went on to explain that he was very certain it was melanoma, but I needed to see a retina specialist to confirm the diagnosis. He said a lot of other things too, but I don’t think I heard them, because by now I had this tingly, weak feeling flooding me from my head to my toes. I was getting hot and cold and the doctor’s voice was echoey. He said he understood I probably had a lot of questions, but I really didn’t. I was too shocked, too numb. He said he would pray for me.

The next day I went to the retina specialist and he confirmed the diagnosis, and gave me a card with the name of my ocular oncologist. That was the first time it hit me. I looked up at Rich, held up the card and whispered, “I have an oncologist.”

After that it was a whirlwind of telling people and making appointments for tests. Then, in the middle of that, we got a text from Riley: a classmate had died in a car accident that morning. We went and picked him up from school, because the one-two punch was too much for him. It’s still proving to be a weighty thing for him as he grieves the loss of a friend, and fears the loss of his mom.

His friends have been amazing. And his teachers too. And his small group leader. And his coach. His school counselor….We are grateful.

We’re arriving in Rochester so I’ll leave the writing for now. In future entries I will explain what I know about ocular melanoma, as well as my treatment. Let me know if there’s anything else I need to cover – I’ve been so scatterbrained from the stress and not sleeping and eating that I can’t always remember what I’ve told people. Thanks for being patient with me 🙂