The sweet spot

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….

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.

Sunday, December 22

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”

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…”

Thursday, December 19

Hey this is Rich – Jen is still unable to type or read, so she’s going to dictate this post to me. She says it’s also my job to wake her up if she dozes off between sentences.

“First let me say, this has not gone at all like I had expected. I sincerely believed that aside from some minor discomfort, this was going to essentially be a five day Mayo vacation. Turns out, this has not been fun. As Rich told you on Facebook, last night was rough. Once the local anesthetic wore off, I was in a world of hurt and the only thing that made it even a little better was lying on my back as still as possible and not moving a muscle. We seemed to get ahead of the pain today though, and things got much better this afternoon. Even so, I’ve spent most of the day with my eyes closed. I’m slowly mastering the art of the “muppet head turn” – where I move my head instead of my eyes. What we hadn’t thought of previously is that when you move your good eye, you also move your bad eye, and the bad eye currently feels like there is industrial strength grit in it. So, no eye movement – which totally shoots to the moon all of the reading I brought with me to pass the time. Seriously, I was going to get things done: thank you notes, script writing, all the magazines I haven’t read in the last two months… yeah, not going to happen.

We’ve had some fun here too. Therapy dogs came caroling last night – okay, the dogs visited while their handlers sang but it was nice to have a dog sit at my feet, just like Harper and Wink would be doing if I were at home. And Rich put up Christmas lights in my room and set up a basket of chocolates for the nurses and doctors, so my room is becoming a pretty popular place. And my “damn it doll” from my dear friend Christy has already been on a tour of the unit and was almost kidnapped by one of the nurses – I will have to post a picture for you all. It’s very cute! My Mom and Dad came to visit today. Mom put up all of my “Get Well” cards on the wall. I can’t see very well but I’m told my room looks fantastic. My Dad took a picture of me today wearing a Santa hat but it wasn’t until I looked at it that I learned that the tape holding my eye patch in place is also holding down the left corner of my mouth. So apparently, every time I thought I was smiling at people today, I was actually doing this really weird smirk. My Mom said it’s reminiscent of Sheldon Cooper (Bazinga!).

For anyone who’s planning on visiting, please, please check in with me before you leave. I’m hoping to be more awake in the coming days but if not, it’s a long drive just to watch me sleep.

Thank you so much for all of the support. Rich has been reading me all of the texts, emails and FB messages and they lift my spirits.”

Good News!

Written by Sara Peterson
I am happy to report that Jen is out of surgery, in her room, and looking like “half a bug?” (that from Rich)! She went into surgery a little early at 1:16 pm. The surgeon told Rich that everything went perfectly! She is in some pain right now, but the nurses say that today will be the worst for pain. She is in Francis 6C, room 111 and apparently her room already has a reputation! Rich has decorated with Christmas lights and has a giant basket of truffles for the nurses… Jen will likely be sleepy and not remember much from this afternoon or evening, but I’m sure that she will be posting tomorrow morning! As you all know, she’s pretty amazing:)

 

Twas the night before surgery…

Well there are some really stressful things about being busy, and some really helpful things about being busy. And things have been crazy busy here. Preparing to check out of life for 5 days is challenging enough, but if those 5 days fall right before Christmas… yeah, I’ve been in hyperdrive the last couple of days. And I’m not sure that’s been a bad thing, to be honest. It means I just haven’t had the luxury of sitting around worrying.

I’m also pretty pumped to do this thing. Don’t get me wrong – the procedure creeps me out tremendously, and I am not excited about being hospitalized with a radioactive bottle cap implanted behind my eye for 5 days – but it’s the first step in fighting this thing. And it feels good to fight. After two weeks of thinking, worrying and waiting, we are finally doing.

I was told my surgery would be at 2:00 tomorrow, but I just got word from Mayo that I have to report for duty at 8:30. That seems ridiculously early, so I’m hoping that means my surgery is earlier. I can’t eat or drink anything after midnight tonight, so an earlier surgery time would be nice. Which also leads me to warn you: if you get any desperate calls or texts from me tomorrow begging you to bring me food or a water bottle or anything – DON’T DO IT. Tough love, friends. You can do it.

So what’s the deal with the embargo on food and even water? Well, this may fall under the heading of “TMI” but I have a wee little problem with anesthesia – I barf. Which is only a mere inconvenience (and sometimes a mess) with other surgeries, but apparently when you have stitches in your eye, throwing up is very bad. So no food, no water, no anything after midnight tonight, and in addition they assured me that they will be including “the 3 best anti-nausea meds we have” in my IV cocktail during surgery. So as silly as it sounds, prayers for no yakking would be appreciated. We need this surgery to work.

I’ve had a lot of questions about visitors. Yes, I’m happy to have visitors, and visiting hours are 8am to 8:30pm. I’ll be at St. Mary’s hospital in Rochester. A couple things you should know, however:
1. Rochester is almost an hour and a half from the Twin Cities. I don’t expect anyone to make the drive – I mean, that’s a long day. You can always come visit me when I get home.
2. If the weather is bad, 52 is not a road you want to be on, so please be safe and stay home. I like you all better alive.
3. I mentioned this before but will repeat: no visitors under 18 or pregnant women. I will not be responsible for glowing children.
4. I was told that if I want to wash my hair it will have to be done “beauty parlor style” in the bathroom sink. Therefore, if you do visit, don’t be surprised if I ask you to wash my hair. No, I’m not kidding (but you are allowed to say no).
5. And this is probably the biggest one: if you plan to visit, please text, call or email me to let me know when you’ll be there. I intend to take as many walks as I’m allowed and able, and it would stink if you made the drive all the way to Rochester only to be told that I’m “somewhere in the hospital”. So let me know and I’ll make sure I’m in my room (and I’ll have my shampoo ready…)

So, hopefully the next time you hear from me I’ll be in the process of radiating this tumor to oblivion (I told my radiation oncologist he has my permission to use extra, just for good measure). Am I nervous about tomorrow? Not yet, but I haven’t really paused to think about it. I’m sure I will tonight. Nighttime is when all the distractions leave and I’m left with only my thoughts and worries and what if’s. But tomorrow the battle starts. Please pray for my warriors: Dr. Pulido, Dr. Holm, Dr. Chen and the rest of my army in the OR. And please pray for Rich and the kids.

Speaking of prayer, I am simply in awe of all the prayer support we’ve received. We are so humbled and grateful. And all the calls, emails, texts, cards, flowers, goodies, meals, hugs… thank you for reminding us in ways big and small that we are not alone in this.

Until tomorrow’s “glowing” report…

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…