Author: Jen

Scans Tuesday

/ Jen / Leave a comment

I almost titled it, “Scans tomorrow”, but just realized it’s almost tomorrow already, so that would be confusing. And speaking of confusing, I didn’t mean to be vague about my scan dates in my last post. I just said they’d be “at the end of the month,” and as a lot of folks are preparing to turn the page on their calendars, I’ve started getting inquiries as to whether I’ve had my scans yet. Fear not gentle reader, I did not have my scans and forget to post the results, I just haven’t had them yet. Sorry about the confusion.

imageSo yes, I head to Mayo tomorrow for a full day of fun – 5 appointments spread from 7:45 to 4:15 (and that last one is the MRI, so I don’t think we’ll be leaving until at least 5:30). We’re back at 7:30 Wednesday for one more exam, then finally results from the doctor, followed later in the day by one more appointment, after which we will hopefully be skipping happily back to Lakeville with good news to report. Two very early mornings, but I haven’t been sleeping much, so it’s fine.

I’ll be honest, this past week has been tough. Directing Godspell was a fantastic distraction, but as soon as it ended, the reality of what was coming hit me hard. And I didn’t even realize it at first. I actually thought I was doing pretty well, but then I found myself getting very snappy and irritable, my jaw and my neck started to ache again and I wasn’t sleeping. And the sleep deprivation and stress combo hasn’t exactly given me the grace of a gazelle, let me tell you (not that I have any inherent coordination usually, but most of the time I fake it well. Not this last week, and I have the bruises and scrapes to prove it). So yeah, we need to get these scans done and get on with life.

I know scans are going to be a big deal every time I have them, but I feel like these ones are particularly important. Because clean scans will mean that every little ache and twinge I’ve felt over the last few months are merely that, aches and twinges. It’s easy to start to panic that any random pain or discomfort is a sign that the cancer is spreading, and as much as I have tried not to succumb to the gravitational pull of hypochondria, well, I have to admit I’ve gone there a few times.

Me: Rich, I’ve had this side stitch feeling for a while now. I’m worried.
Rich: Why?
Me: Because it’s on my right side! And that’s where the liver is, I googled it!
Rich: Ok….
Me: What if it’s the cancer spreading?
Rich: What if it’s gas? You’ve been eating a lot of vegetables…

This crazy woman who has taken over my body needs to leave. I hope to be evicting her on Wednesday.

It’s really amazing though how many wonderful people I have surrounding me and my family right now, despite the presence of the crazy lady. Seriously, not a single one of them has fearfully snatched up their small children and run away. I mean I understand that crazy can be entertaining, but these folks are here out of love, I know it. And that is a very cool, very reassuring thing.

I included a picture from Godspell (and if I had any technical ability at all I’d have it inserted here, but honestly I’m just happy I successfully uploaded the picture). I wasn’t sure when I was diagnosed if I should stay on as director or not, but I’m so glad I did. The show, and the amazing people involved with it, blessed me more than I can say.

If you are inclined to pray, I would ask for your prayers Tuesday and Wednesday. Prayers for safe travel back and forth to Mayo (they’re seriously predicting snow. Seriously.), for scans to show that the tumor is responding to the radiation and that the cancer has not spread, and most of all for peace as we wait.

Thank you all for your love, support and grace,

The crazy lady
(leaving Wednesday!)

The sweet spot

/ Jen / Leave a comment

Hi! No April foolin’, just me with a check in. Nothing major to report, but I’ve found that if I don’t periodically post a little shout out, people start to get nervous. Let me assure you, no news is always good news – I promise, you all have been so good to us, I will not keep you in the dark. We appreciate your love and support!

Not much has changed with my vision this past month. I’m sure it’s gotten worse, but it’s happening so slowly that I’m adapting to it pretty well. I’m getting a little better with the depth perception (although anyone in my Godspell cast will probably disagree – I’ve tripped up and down the stage steps more times in rehearsals than I can count. But then, that could just be my clumsiness. And that’s nothing new).

This past week was devoted to “making sure all the other stuff works.” Four doctor appointments in four days, including a mammogram, Pap smear, multiple blood draws and a colonoscopy. I have been violated in the name of science in just about every way possible, but the good news is that everything else does in fact work just fine. I learned the hard way that you do not want to be driving when your colonoscopy prep starts to work. Disaster was averted, but not without me screaming at the slow driver ahead of me, “MOVE! I’VE HAD A LAXATIVE!!!” Good times.

Editor’s note: the following is another post-turned-extremely-drawn-out-story, so grab a sandwich or a cup of tea or something and get comfortable. Or just skip it, that’s totally fine too. I won’t know.

So I titled this post “The Sweet Spot” because for the past month that’s what I’ve been
seeking – that perfect balance between being completely blissfully ignorant, and being entirely over informed. Somewhere in the middle is the sweet spot: an informed patient who advocates for herself – not someone who blindly (ooh, bad pun) goes with the flow, and not someone who immerses herself in her condition to the extent that she becomes a hypochondriac and total nut job – just the comfortable middle place between the two extremes. The sweet spot. I haven’t found it yet, but after a rough month of dealing with my health care (and, in some cases, not dealing with it), I think I might be on my way.

As I described in my last post, I was having trouble getting through to my doctor or his assistant. I had concerns that the tests that had been ordered weren’t the appropriate tests, and there were some things he had said would be happening that weren’t. Every time I called his asssitant’s direct line, I instead got some snippy lady in ophthalmology who clearly thought I was a nuisance and wasn’t interested in passing along any of my questions or concerns. And when one of these aforementioned snippy ladies huffed that of course I couldn’t get through to him, he has more patients than he can handle, well, let’s just say it did not inspire confidence. At the time, I resolved to just leave it and take these issues up with Dr. Pulido at my next appointment. And initially I thought I was ok with this. But then I started waking up with horrible jaw pain, and my neck got so tight I couldn’t turn it all the way to the right….yeah, turns out I was a little more tense than I thought. So, after talking with some girlfriends and crying to Rich about it, I came up with a brilliant idea: the next time I called the assistant’s direct line and a Snippy Lady answered I would simply ask for the assistant’s voice mail. Ah ha! Then I would be able to ask my questions and get some peace of mind to last me until my appointments. Perfect.

So Rich came home the next day and asked, “Did you call Mayo?”
“Nope.”
“Why??”
“Because I was having a good day.”

See, that’s the other thing: some days I just don’t feel like having cancer. The sun is shining, life is going well, I’m busy with things that make me happy – and I don’t want to wreck it. So I don’t. I pretend for the day that cancer is someone else’s story.

That’s one end of the pendulum, the blissfully ignorant, blindly trusting (bad pun again) person. But it’s amazing how fast and unpredictably the pendulum can swing to the other extreme: the total nut job. Out of nowhere, on a seemingly fine day, I found myself again scouring the internet for some assurances that I was having the appropriate tests. And to be clear, let me just say this is not about the tests. I mean, yes, the tests are important because the more sensitive the scans, the earlier they can catch any spread of the cancer. It doesn’t mean you’ll live, but catching it earlier gives you more time, and that is important to me. But the real issue with getting the right tests is feeling confident in my care, being able to rest in the knowledge that I’m in the best hands possible. And when everything I was reading was saying that the tests that had been ordered for me were not enough, I started to worry. What if Mayo wasn’t the best place for me? What if I had just placed my life in the hands of an overburdened system that simply couldn’t handle one more patient with an obscure cancer?

Like I said, the pendulum swings quickly and without warning sometimes. But for whatever reason, I woke up one morning and decided that I was going to call my doctor’s assistant, and this time I would ask for her voicemail. So I did exactly that. As expected, her direct line was answered by a Snippy Lady, who informed me that she wasn’t there that day. But this time I was smug.
“May I have her voicemail please?”
“Nope. It’s just me.”
Whaaaat???

Yeah. Did not expect that. I hung up, defeated once again by the Mayo brick wall. Unless… I have no idea what made me think of it, but I got out my iPad and looked up the number for Wills Eye Hospital in Philadelphia. They are, to my knowledge, the number one place for ocular oncology, featuring a husband and wife team of doctors that are at the forefront of ocular melanoma research and care. I hadn’t been able to find out anything about their follow up testing online, but what if I called? I found a general number for the ocular oncology department, and when I dialed it spoke with a very nice (read: not Snippy) lady. I asked her point blank what Dr. Shields’ follow up protocol was after plaque brachytherapy, and she promptly rattled off the components of their “metastatic workup” – and it was exactly the tests that I had read in other places that I should be having, not what Mayo had me doing. So there. A definitive answer, and confirmation that I needed to pursue changing my tests, or at least talking with my doctor about that. And the lightbulb here for me was the realization that I am not shackled to Mayo. It would be a pain, yes, and I don’t know what my insurance would think of it, but if I need to I can go to Philadelphia for my care if that’s the best place for me to be.

Armed with this fresh sense of boldness, I went to my ever growing medical file and searched through all my Mayo pamphlets, packets and various papers, looking for anything that sounded like “customer service.” Which is how I found the Office of Patient Experience. To make an already long story less long, after about five phone calls with three people over four days (not kidding), I was able to speak directly with my doctor’s assistant. And, I must add, unlike the Snippy Ladies, she is one sweet woman. After sharing my concerns with her, I asked if she could check with Dr. Pulido about my tests. She was more than happy to connect with him on my behalf.
“So what are you asking for?”
Commence nervous babbling…
“Well I’m not trying to challenge his authority or anything like that, I mean it’s not like I have a medical degree or anything, and really, what do I know anyway? I’m just some crazy lady with cancer and access to the internet, and I’m scared and -”
Stop. Deep breath. Put on your big girl panties and start over.
“I would like to follow the Wills Eye Hospital protocol.”

I received a phone call two days later saying that my tests had been changed.

And I am the closest I’ve come yet to the sweet spot. The closest to being an informed patient who is willing to take the time and effort to advocate for herself when necessary, without going all crazy cancer lady (my kids’ term for when I lose it). I feel good that my doctor clearly is willing to let me have a say in my care, so I’m staying at Mayo. For now at least. Because as captain of my care team I know I can switch to somewhere else at any time. I don’t think I ever wanted to be captain, but I’ve learned that the person most invested in my cancer journey is me, so I’d better buck up and take some responsibility. Big girl panties are on.

Whew, that was a long one. Thanks for hanging with me and as always, thank you for coming with us on this journey. We are blessed beyond measure to have the support and love that we do. So thank you.

I have my Mayo scans and appointments at the end of the month, so I don’t expect to post again until then (unless I have another freak out – I’m told I’m funny when I flip out). I would appreciate your prayers and positive thoughts for good appointments – that the scans will show that the radiation is causing the tumor to shrink, and that there is no spread to other organs. And that the nerves in the weeks leading up to those scans don’t get the best of us.

❤️

She’s baaaaaack….

/ Jen / Leave a comment

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!

/ 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.

Merry belated Christmas!

/ Jen / Leave a comment

Merry Christmas, one day late!

Monday I got home in the afternoon, and despite being uncomfortable from the surgery had a lovely evening sitting on the couch between my sweet kiddos, with the four-legged kids occasionally interrupting for some attention of their own. So this is the stuff that I was going to post then, but was too blissed out to get to…

The surgery Monday went fine, just as they expected. While the first surgery required great precision and a fair amount of time (they checked the plaque placement via ultrasound 3 times during the surgery), this was a pretty quick in and out deal. I still felt like I’d been hit by a bus afterward, but that only lasted a few hours, then I was free to get the heck out of there.

So here’s what the next month looks like: drops in my eye twice a day for 2 weeks to keep it dilated (this supposedly helps with pain), a neosporin-like ointment squirted in my eye 3-4 times a day for 4 weeks (helps it stay lubricated and comfortable. Unfortunately it also makes it very hard to see), a shield taped over my eye at night (to keep me from poking myself while I sleep – and because they must have known how much I’d miss having industrial tape ripped off my face daily), a total kibosh on exercise for the month and…this one’s a doozy…I am not allowed to lift anything heavier than 4 pounds. Seriously. It’s fine right now while I have kids, husband and in-laws visiting, but once school starts back up and Rich starts traveling again it’s going to get interesting. So all of you who have been asking what you can do to help, I may be calling on you in a few weeks. Just silly stuff like going to the grocery with me so I have someone to put bags in the car, walking the dogs, carrying laundry upstairs, that sort of thing. My kids are good helpers (and pretty strong too), so I should be ok most of the time, but there may be some times I need to put out an SOS. And I do enjoy company. Left by myself too long, I do things like think..and look at google…and that’s just never a good thing for my sanity.

My eye is looking much better every day. On Tuesday when I was able to take the patch off, my eye was so swollen I couldn’t open it. On Wednesday I could open it a little, and what we saw wasn’t pretty – the eye was completely bright red. Today I could open it more, the eye is still red but maybe not such a vivid red, and I can see ok out of the eye (provided I haven’t put my gel stuff in recently). It’s sore, and sometimes I can feel the stitches (they will supposedly dissolve), but mostly it’s ok. I haven’t noticed much in the way of double vision, but Rich said the doctor said that would come on a little later. I don’t remember hearing that, but then I was asleep for much of last week. Oh, and I do remember them telling me this, I just didn’t think it’d be so extreme: they cut my eyelashes. I knew they were going to trim them for surgery, but holy cow, it’s the eyelash version of a crew cut. I’m not a terribly vain person but that was tough to see. And I don’t think eyelashes grow quickly. Sigh.

I’ll see my ocular oncologist in a month, but it will be strictly for post-surgical follow up. They’ll check to see if the stitches have all dissolved and if not, they’ll take them out. And yes, I writhed and whined when he said that, but he assured me there would be lots of numbing drops involved. They will also evaluate my vision and if I’m still having double vision I’ll be sent to “the eye muscle guy”. It’s the Mayo Clinic, of course there’s an eye muscle guy.

I was disappointed to learn that they won’t be able to tell me at that visit whether the radiation is working or not. Apparently it’s a pretty slow thing, so that appointment won’t be until 4 months from now. I do not like this. I want to know RIGHT NOW if we fried the sucker into oblivion or not. But we will wait. The doctor said to plan for an entire day when we come that time, because in addition to zillions of pictures of my hopefully shrinking tumor (actually he said it might not even be shrinking by then. They just want to see that it hasn’t grown), they will also at that time do scans and liver function tests to see if there’s been any spread of the cancer.

So, to review: this month is dedicated to recovering from the surgeries. Then, we go on with our lives and try to forget that I have cancer for 3 months. Then we have the big appointment to see where things stand. Assuming all looks good, I will then go on a schedule of scans and blood work every 3-6 months.

Somewhere in all of this we will have to come up with a way to live in this limbo, this permanent uncertainty. Because with this type of cancer, you don’t get to be considered “in the clear” for 15 years. Don’t get me wrong, 5 and 10 years will be milestones, but 15 years is the biggie.

For now though, we’re focused on getting through this month. One hurdle at a time, one day at a time. So far so good.

Sunday, December 22

/ Jen / Leave a comment

imageThis is still Rich taking dictation…

“The good news is that I have felt a ton better the last two days. The bad news is that it’s made me totally antsy. Luckily, I’ve had visitors and Rich to keep me entertained and from going totally nuts. The walks haven’t turned out to be quite as much of a time waster as I had anticipated because 1) I can’t go by myself so I have to wait for someone to walk me and 2) I have to focus on the floor about one foot in front of my feet while I walk. I’m told that St. Mary’s is very lovely but, frankly, their floors are boring. My nurses are fantastic and my party room has enabled me to meet far more people than would otherwise be coming into my room. Seriously, there is a woman from housekeeping and another woman from room service that I will truly miss.

Today our friends David and Elena visited and surprised us with a French picnic, complete with tablecloth and wine glasses. The food was a delicious treat but more than that, hanging out with them was a little glimpse of normal (and this is the only time you will ever hear me refer to Rich and David as normal when they’re together). Watching Rich laughing with David, I realized that I haven’t seen him laugh that hard since before my diagnosis. It made my heart happy. Oh, and thanks to them, I now have a disco ball hanging in my room. How many people can say that?

So, tomorrow will be an early morning as they’ll come get me for surgery at about 6:30. The surgery should happen between 8:00 and 8:30 and is expected to go quickly. Once I’m out of recovery they’ll bring me back to my room, and when everyone is convinced that I’m fully recovered, I’ll be allowed to leave. I was pleased to learn today from the doctor that as a favor to me, he plans to wait to remove my bandages until after I’m under the anesthesia. This is welcome news because having several layers of skin ripped from my cheeks every day when the bandages get changed has been one of my least favorite things. But I expect that when the swelling and redness goes down, the left side of my face with have the youthful glow of someone who’s had a chemical peel. So I’ve got that going for me…

We’ll probably post something tomorrow night to let everyone know that the surgery went well and I’m home but I expect it will be short. I’ll be spending time with my family… 😊”

“I’m hot”

/ Jen / Leave a comment

imageHi everyone – this is Rich again. I’m still doing the typing…

“The ‘I’m Hot’ in the title is a reference to the t-shirt that Rich got me that I wore today. Everyone on my floor thinks it’s funny, but we discovered when walking around the rest of the hospital that most people just give me a wide berth – especially in elevators. But the big news today is that I’m feeling a lot better! I showered and a nurse washed my hair and I’m about to take my second walk of the day. I’m also getting much more accustomed to life as a muppet, which is just a more comfortable way to be when you have a bottle cap attached to your eye. My room continues to be the “party room” according to one nurse who stopped by to look at the lights and have some candy. And speaking of stopping by, Dr Pulido came by again this evening to check on me. I’ve said it before but he really does give the impression when you are with him that you are his only patient. He pulled up a chair, got comfortable and didn’t leave until all of our questions were answered. He’s a good guy and I’m very grateful.

I’m really missing my kids. Tessa had set up FaceTime for me on my iPad and phone but it’s really hard on my eyes, and the wifi here is lousy, so we’re just sticking to phone calls right now. My parents are taking great care of them so Rich can be here with me. Looking forward to some visitors tomorrow and still enjoying all of the messages and texts that Rich has been reading me.

It’s Friday night but apparently there are “rules” here about alcohol consumption – so someone, please, have an adult beverage for me! Happy Friday to all and to all a good night…”