Ocular melanoma

The Riddle

/ Jen / 9 Comments

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REALLY sorry I’ve let it go so long! Any of you on Facebook with me know that I’m fine, but for my non-Facebook friends, I’m sorry I left you hanging. I am indeed fine. Actually better than fine, but you’d never know that from my silence! Sorry ’bout that. I know I said in my last post that I had scans at Mayo coming up in December, and I fully intended to remind everyone as the day drew nearer, so that my prayer army could saddle up, but I kind of forgot about one thing: finals. Yep, as the parent of a college freshman I can totally say this is my first rodeo, and I’m still learning. And what I learned this time is that you simply do NOT schedule scans when your kid is in the middle of final exams. First of all, it’s just not nice to add worrying about Mom’s health to a list of stressors that includes things like calculus and chemistry. And second, what if the news was bad? We certainly couldn’t tell him in the middle of finals. But if he knew I had the appointments he would ask about the results. And I suck at lying. So we had no choice but to keep the Mayo trip on the down low. Lesson learned.

The day went great, by the way. My liver, lungs and blood all checked out splendidly, so the cancer is staying put in the eye for now (and hopefully forever). My oncologist was positively giddy at how well the Avastin injections are working, and for good reason – I was supposed to be pretty close to blind in that eye by now, and I am definitely NOT blind. It’s sketchy, and I would be in trouble if that was the only vision I had, but sketchy vision is way better than no vision. Plus, as luck (and symmetry) would have it, I have another eye. And that one works just peachy, so it’s all good. Barring any weird hemorrhages in the radiated eye, everything should stay like that from here on out, which is pretty sweet. And my oncologist didn’t give me any crap about my RA meds! Woo hoo! So he and my rheumatologist can go on disliking each other, but I don’t have to get in the middle of it. I like that. A lot. I don’t have to go back to Mayo for 9 months now (and before you say it, I already checked – no final exams then).

In December and January I saw my rheumatologist and orthopedist, and everything is going well there too. The one disappointing thing from my one year post-op appointment (hip replacement for anyone who forgot. That includes me, because I mostly forget about my bionic-ness), is that my orthopedist’s idea of “light running” is even lighter than I imagined. Like taking 9 months to work up to 3 miles, and it all has to be on a treadmill – that kind of “light.” I have to see him again in a year and at that point he will decide if I get to ever run outside. So I haven’t even started the treadmill running, because what’s the point? If I’m going to be inside on a machine going nowhere, I can ride a bike to nowhere or climb stairs to nowhere and still get…nowhere. The point of running (to me, anyway) is enjoying fresh air, scenery, the company of others, and maybe racing (especially if there’s a fun t-shirt and/or cold beer at the end). So that didn’t work out like I had hoped. I knew it was a strong possibility though, so while I’m bummed, I’m not surprised. The hardware is looking good on the x-rays, and things are working so well that I mostly forget I have it. I do have a leg length discrepancy from the new parts, and it’s made my pelvis a little wonky, but the doctor didn’t seem concerned about it. So I’m not concerned either.

I’m still working with a nutritionist, trying to find out which foods make me feel the best, which ones tick off my RA and how to best fight cancer through what I eat. The key is to boot the things that harm, without going overboard. As I explained to my internist, I’d hate to give up dairy, then later find out I’m dying and have my first thought be, “I could have had cheese!!”

So that’s the scoop on my health – pretty doggone stable, and I like it that way. It’s boring, but it’s the good kind of boring. And speaking of boring, allow me to explain the picture at the top of this post (no, it’s not the photographic equivalent of a butt dial, I actually meant to take the picture): it’s the waiting room floor at my oncologist’s office at Mayo. I hate it, I really do. And it’s all I get to look at when I’m there, because the very first thing they do when I get there is turbo dilate both of my eyes. So no texting, checking emails, reading magazines or books. Just staring at the floor for hours (and I’m not kidding about the hours thing – this last time I waited for 2 hours to see my doctor. Super fun.). I think what bugs me the most about the floor, aside from the incredibly drab colors, is the fact that there is no discernible pattern. I’m a Type A, organized, child-of-an-engineer kind of person. I like patterns. I like knowing what’s coming. And this room, this cramped space with the ode to brown decor and stale air, is where I would most like to know what’s coming. I arrive at the Mayo Clinic hours ahead, sometimes even the day before, and I go through test after test, until I finally arrive at this place, where we wait to hear news that will be either exhilarating or devastating. And while we wait, I stare at this stupid, senseless floor with no pattern. It occurred to me this last visit that having cancer is a lot like looking at this floor, like trying to find a predictable sequence where none exists. I can read up on my cancer, and I can research treatments and survival percentages. I can eat perfectly, sleep enough, exercise regularly, and do everything in my power to increase my odds of beating it, but I can never predict what it will do. I can’t tell you why I even got it in the first place, either. I think that’s why I don’t like the floor. It has no pattern.

And I think that’s true of a lot in life, not just cancer. For those of us who yearn for the stability of predictability, when life throws us a curve we’re shaken. Sometimes we’re shaken in a good way, nudged out of our comfortable, protected space and into a place of growth and possibility. And we are ultimately glad to be in this new place, even if it was rough getting there. Sometimes though, we flail and gasp for air, desperately grasping for anything that feels solid and safe. And predictable.

In December, on my two-year “cancerversary,” two teenage boys in our town were killed in a car accident. On a day when my family and I were celebrating that I was alive, two families and an entire community were trying desperately to wrap their heads around the unthinkable. Days later, I went to Mayo for my scans, terrified as always, but also bearing the sobering thought that I had already lived longer than those boys. It made no sense. It was out of sequence.

When the unknown is merely theoretical, we can give it poetic names, like “embracing the mystery.” And that’s great when the mystery involves only lovely things. Like, will we have cake or cupcakes? Wine or cocktails? But when the unknown could involve heartbreak, loss and grief? That’s harder. Faced with that, who wouldn’t want to turn to the last page of the book to see how it ends? Ok, ok, I know people who wouldn’t. But I’m not one of them. I like knowing things ahead, so I can prepare myself. In her book, Daring Greatly, Brené Brown calls it “foreboding joy.” And it’s not a good thing. If we live our lives preparing for the worst, we prevent ourselves from enjoying the best.

Of course, if we always knew what would happen, we wouldn’t need faith. We wouldn’t need one another. We wouldn’t need a lot of the things that ultimately make our lives meaningful. So we “embrace the mystery,” we “wrestle with the unknown,” we reach for one another, dare to try new things, take chances…and we don’t wait to find out that we’re dying to live.

So I’m trying to change how I view that awful, beige floor. Sure it’s ugly, but it presents a challenge, a helpful exercise if I’m willing to look at it that way. As with life, when I survey its patternless expanse, I can allow myself to get frustrated at my inability to make sense of it. Or, I can choose to stop trying to figure out the puzzle and instead make the most of my time in it.

I had a friend who passed away from colorectal cancer years ago, and I remember how she and her husband loved the song “The Riddle” by Five for Fighting. At the time I really didn’t understand the appeal of the song, but it makes better sense now. I read an article about the songwriter, and it told of how he took 18 months and over 100 drafts to write the song – a song that started out as a meditation on the meaning of life, but ended up being about his relationship with his young son. And that is about as close to an answer as I think we’re going to get for now. Relationships. With our Creator, and with each other. Spending our time well while we’re here.

“There are secrets that we still have left to find,
There have been mysteries from the beginning of time,
There are answers we’re not wise enough to see,
He said, ‘You’re looking for a clue? I love you free’…

Here’s a riddle for you, find the answer:
There’s a reason for the world,
You and I”

So I’m trying to make my peace with the patternless floor.

It’s still ugly though.

In it, not through it

/ Jen / 1 Comment

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Let me begin with an important announcement: I’M FINE! Yes, I know it’s been over a month since my last post, but I assure you it’s only because I got busy with the stuff of life, not because something bad has happened with my health. I absolutely appreciate the concerned queries when I’ve gone an extended amount of time without posting, but I promise you, if anything ever goes wonky health-wise you will be the first to know. Wait, let me correct that. I will FIRST notify my parents and close family. THEN I will tell the world. “I don’t want to hear it on Facebook,” my mom is fond of saying regarding any major news. You won’t, Mom. Promise. And, I hope to never have anything bad to report anyway, so let’s talk about something else.

Ooh, how about something new, like for instance my health? Yeah, even I’m getting tired of all that, so I’ll keep it brief. I had my second eye injection last week and I think I’m already well on my way to achieving pro status at that craziness. Which is good, because the first one didn’t seem to put a dent in the bleeding around the tumor, so this is going to be a monthly thing for the foreseeable future. It’s a pretty slick process: numbing eye drops, then a shot of novocaine, then the Avastin injection and a super attractive eye patch for a few hours. The eye is irritated and a little sore for a bit, but that’s about it. If it didn’t take two hours, I’d be fine with the whole business. Yes, you read that right – two hours. I have no idea why, other than the office is crazy busy. Or they figure all the patients are ninety years old and don’t have anywhere else to be, I’m not sure. At least they didn’t dilate my good eye this time, so I was able to sit in the waiting room and send annoyed texts to friends. Yes, I could have used my time much more productively and positively, but the snarky texts were more fun.

On the rheumatoid arthritis front, things haven’t been going so swell (Ha! I just caught that when I reread this. Bad pun. Sorry, I’ll try to be better…). I’m starting to think that the new drug isn’t working as well as the old one, mostly because when I was on the old drug I frequently forgot that I even have RA. Now I’m not a doctor, but I would say that’s an indication that a drug is working. On the new drug, however, I am in no danger of forgetting that I have RA. It’s nothing terrible or debilitating, but it’s not pleasant either. I only switched meds in mid-April, so it’s probably too soon to officially say that it’s not working (you’re supposed to give RA drugs a good three months to work), but I might have to call my rheumy soon to chat about it. Which stinks, because in the Great Mayo/Edina Treaty of 2015 we were able to find an RA drug that both my oncologist and rheumatologist were cool with. Getting both parties to the table again in the same year would require a huge diplomatic effort. I might need to call in some reinforcements.

Speaking of calling doctors, I do have something to share that may be of some help to any of you who, like me, have ever put their life on hold while waiting to hear back from a doctor. You know how it goes: you call the office and leave a message with their nurse. She/he talks with the doctor and then either the nurse or doctor calls you back…sometime. You know that if you miss their return call, you’ll have to repeat the waiting process, so you resolve to have your phone on your person at all times. You’re ready. You bring that phone with you everywhere. In the car, to the grocery, within reach of the shower when you bathe, in your fitness class (yes, you even risk being one of those people), and yet they never, ever call. Fear not, sweet friends, for I have found the answer. I have discovered exactly what to do to cosmically summon that phone call: color your hair. Yes, it has worked for me enough times now that I can say this with the utmost confidence. Color your hair. Pile a ton of the darkest, goopiest, stickiest dye you can find on your head, smear it generously into your hairline, being careful not to miss the sections around your ears, and a doctor will certainly call. I just had to replace my phone case because it had auburn smears all over it, that’s how well this method works. A small price to pay for returned calls, I would say. So if you want a doctor to call you back, just color your hair. Or, if you like your hair the shade that it is, I bet that any messy project will work. Just make sure that it is super inconvenient to hold a phone while doing the task, and you can expect that call. I colored my hair the other day and not only did two doctors call me, the guy from the car dealership also called to tell me my new floor mats were in. Bonus.

So that’s it for today. I will try not to go more than a month without posting, but no news really is good news. It means life is keeping me busy, which is a lovely thing. Being alive is just great period, I try not to forget that. It’s easy, however, to get caught up in the to-do lists and things that stress me out – and when I do let them overwhelm me, I am not my best self, I will be honest about that. I end up just trying to get to the other side of it, get it over with, instead of relishing the fact that I get to be here for this. For all of this.

This week is totally nuts. My son graduates, I have out of town family visiting and we’re hosting a party. I’m also on the senior poster committee for the all night senior party and coordinating music for a Disabled American Veterans event the day before graduation. Riley has parties to go to, a few last tests, the senior brunch and baccalaureate. Tessa has dance team tryouts and a major group project due for one of her classes. We are not a calm household at the present moment. At times like these, it’s easy to think, “I just want to get through this week.” But then at church yesterday morning I ended up talking to my friend Marilyn and she said something that really grabbed my attention. Marilyn is one of those people that just has a light around her, one of those rare beings that you find yourself wanting to get as close as possible to, as if her goodness is a kind of wet paint and you’re hoping to get some on yourself. Among the challenges she’s faced in her life is a very advanced case of RA, and she inquired as to how mine was doing. I told her a little bit, but then couldn’t help totally fan-girling her: “You are so incredibly strong, Marilyn, and your attitude is just inspiring. How do you do it?” She smiled that beautiful, radiant Marilyn smile. “Well, I ask God every day to give me a heart for my journey, and peace as I make my way.”

I let that sink in a bit.

“Give me a heart for my journey, and peace as I make my way.”

I know that’s meant to apply to life in general, but I couldn’t help hearing it in the context of my upcoming week. I realized that during a pretty important week in our family’s life, I was only seeing the work that needed to be done, and the obstacles, both health and otherwise, that lay in my path. I was just trying to get through the week, get on the other side of it, rather than simply being in the week. Living “in the moment” can be such a clichéd phrase that the meaning doesn’t even register anymore, but that’s really what it is. Or needs to be.

I resolved then and there to focus on being in this week, rather than just trying to get through it. Being fully present for everything. Enjoying the company of friends and family, marking a huge milestone in my son’s life and doing it all with gratitude. A heart for my journey. And peace as I make my way.

Deep breath. Here we go…

Cleaning glasses and taking carts

/ Jen / 1 Comment

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Well folks, the news on the eye injections is that they are NO BIG DEAL! Can I get a woot woot? As you can see from the picture, I still rewarded myself with a chocolate bar, but it was definitely a case of the anticipation being far worse than the actual event. And yes, I did see that scary anti-smoking commercial (by accident, I assure you), where the woman is sitting in the doctor’s chair with her eyelid held open with some torturous device and a needle coming directly at her, and that is quite honestly what I expected. Thank goodness that wasn’t the reality. But oh, I sure did work myself into a pretty good panic ahead of it, I will tell you that. And it took forever at the retina specialist’s office before we even got to the injection, AND they dilated me in both eyes first, so I had absolutely nothing to do but sit in the waiting room nervously awaiting the procedure, listening to all the other patients around me chatting – and by chatting I mean shouting at the top of their lungs. I am sure I don’t have to tell you at this point that everyone else in the waiting room was a good 30-40 years older than me, because that’s pretty much the drill at all my specialists’ offices. What can I say, I don’t just have an old soul, I apparently have an old body too. After listening to one couple engage in a disturbingly clinical discussion of funeral homes, I heard another lady remark to her daughter that she was getting another injection. “Does it hurt?” I interjected. The woman looked at me quizzically. “DOES IT HURT?” I shouted desperately. She looked at me like I was a total wuss. This frail, 90-something year old woman, who needed a walker and was about half my size. “Well not really,” she responded, still looking at me like she couldn’t tell if I was joking or not, “It’s just a little stick, that’s all.” Seriously. This is how I knew I was being the world’s biggest ninny.

Honestly, the worst part wasn’t even the injection, it was getting dye shot into my hand for the fluorescein angiogram (fancy eye picture that shows blood vessels). The eye injection stuff was legitimately no big deal. They used numbing drops first, and the doctor gently held my eyelid open with his fingers, not that horrible clampy thing from the commercial. He stuck me with a needle of novocaine and then the needle of Avastin, and it was over. And I didn’t feel anything. All that panic for nothing. Which is good, because apparently this is going to be a monthly thing for me until they get the bleeding under control. I had to wear a patch for a few hours and I was sore for the rest of the day, but really – not worth the emotional energy and stomach lining I wasted worrying about it. I find that a lot of things in life are like that, and every time something like this happens I am reminded of something my friend Jami’s mom used to say: “Worry is suffering in advance.” Truth.

Oh, and Riley picked a college! He’s going to be studying engineering at the University of Wisconsin – Madison next year. And no, we didn’t get any signs to help with the decision. Not one. No prophetic dreams either (one of his friends was lucky enough to have one of those, and is going to Madison because of it. “Did you happen to notice if I was there too?” Riley asked him hopefully. No dice). No, sometimes tough decisions demand to be wrestled with, and that was the case here. We are all just relieved that it’s finally over and that we know what color sweatshirts to buy.

I saw something in the paper the other day – one of those heartwarming stories about a person who did this very huge, very generous thing for someone who was down on their luck. It was a great story and an even greater act of kindness. I cried when I read it – but then, I have a senior who is about to graduate, so I cry pretty much daily now. Don’t judge. But this was legitimately tear-worthy. And it got me thinking about all the amazing acts of kindness that I’ve been the fortunate recipient of with all my health “issues” in the last few years. The thing is, the ones that come to mind aren’t always the huge, splashy ones. Actually, it’s some of the smaller ones that touched me the most. For instance, we were over at our friends’ house one night a few months ago. I was tired and crabby for reasons I can’t remember, and I was complaining to one of the other guests that I can’t keep my glasses clean. Yes, that is the minutia that I chose to gripe about – my perpetually smudged glasses. I had to start wearing them after my cancer diagnosis (to protect my good eye), so maybe I associate them with that. Or maybe they’re just a pain to wear, who knows. Anyway, just as I was mid-rant, our friend Stan (who, with his wife Deb was hosting the evening) happened to walk by. He stopped and listened with a furrowed brow, and then held out his hand. “Give them to me, I’ll clean them.” “What?” I stammered, “No, you don’t need to – I mean, I can totally – it’s nothing, really – I’m fine.” As I was protesting, Deb walked by and patted me, “Oh let him clean your glasses! He’s so good at it.” “Yes!” Stan laughed, “I’m the expert! Now give them to me.” So I meekly handed them over and he went to their kitchen desk, produced a special cloth and a bottle of glasses cleaner – I think I have one of those but I’m too lazy to ever use it – and began to meticulously clean my filthy glasses, periodically holding the lenses up to the light to check for errant smudges. I just stood there and watched. It was such a small thing really, but in that small act of kindness I felt heard and cared for, even at my whiniest and least deserving. Grace… It doesn’t just feel good, it has the power to transform.

One other moment that I remember vividly happened in February, a few weeks after my hip replacement. I had made the transition to using only one crutch, and was fully enjoying my newfound mobility, freedom and independence – well, I thought I was independent. At this moment I had just completed my first solo run to Target and was feeling thoroughly triumphant as I exited the store with my cart. Unassisted, ha! I can do this! Now, the thing about having a handicapped tag for your car is that you get to park close to the store entrance, but not necessarily close to the cart return. Did I mention it was snowing? Hard? Yep, and as anyone who doesn’t live in a tropical paradise knows, carts are hard to push in snow. I contemplated this reality as I used my non-crutch arm to unload my bags into the trunk of my car. So much for being capable and independent. Just don’t wipe out, I told myself. As I turned to look for the nearest cart return, a woman approached. “Can I take your cart for you?” She asked with a kind smile. “Oh my gosh, that would be amazing! Really?” I peered at her through the heavily falling snow. “Really,” she laughed, and proceeded to commandeer both her cart and mine and move briskly toward the cart return. “Thank you!” I called after her, suddenly feeling very warm even as the cold snow fell.

It’s impossible to put into words exactly what these small acts of kindness meant to me, or how they encouraged and changed me. And I wonder how many times I’ve missed opportunities to do similar things for others. How often have I been so engrossed in my own personal sphere of “me-ness” that I haven’t noticed people around me who could use a hand? Or an ear? Or a shoulder? It’s so easy to get caught up in the mental to-do list, the “what’s next?” and completely miss what’s happening now. Because what’s happening now could be an opportunity to love on our fellow humans, if we can just poke our heads out of our bubbles long enough to see them. We tend to think of acts of kindness as being BIG things. But there is incredible power in the small acts too. I know because I was and continue to be the recipient of so many beautiful gestures. They inspire me.

Hoping you maybe find yourselves inspired too, and that you grab hold of those opportunities – both big and small – to be kind to others. You may not get thanked or know the full effect of what you did, but I can assure you, it makes a difference.

Signs

/ Jen / 5 Comments

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So here’s the rundown on my Mayo trip last week. Sorry it took me so long to post, but the treadmill of life has been whizzing along at a brisk clip, and I had to once again return from Mayo and jump back on right away. No time for quiet contemplation (will that ever happen??). I did get to sing at Easter services and even lead the Call to Celebration – pretty powerful stuff to be talking about resurrection when you’re feeling reborn yourself. And so cool to celebrate with people who have been faithfully, tirelessly praying for me and encouraging me throughout all this.

So back to Mayo… First off, this picture is evidence, I believe, that someone at Mayo has a sense of humor – it’s the sign outside the room where I had my IV put in before my MRI. But then I asked if I was getting a pedicure or neck rub in addition to my IV, and the nurse acted very confused, so obviously not everyone is in on the joke. In fact, he proceeded to get extremely serious about my veins (to be fair, they are unusually slippery suckers), going so far as to use what looked like a stud finder to locate his target. He still had to stick me twice. In the “relax room.”

But I have to say I’m getting better at MRI’s with each one I do, and now I’m not panicky at all. Just a wee bit nervous. As long as I have my magic eye mask, I’m good to go. And music – a lot of MRI places give you headphones so you can listen to music while you’re in the tube, but not Mayo. At least not for their liver MRI’s, probably because you have to listen to directions about when to hold your breath and when to breathe “normally.” Like there’s normal breathing when you’re stuffed in a tube. So a few times back when I told my best friend Karen that I was music-less, she resolved to fix that. Since then, right before every MRI, I receive a text from her containing the lyrics to a song pretty much designed to drive me crazy in the tube. I usually get the text while I’m in the waiting room, and then gasp and burst out laughing, thereby confirming all of the other patients’ suspicions that I’m totally nuts. It does get me a large dose of personal space however, so there’s that. Anyway, I like you all too much to tell you what this last song selection was. Suffice it to say, part of the chorus doesn’t even involve real words, and it took days for me to purge it from my mind (oh and Karen, my family thanks you for that as well, because you know I sang it out loud every time it returned to my brain. They send their love).

Among other things that made me laugh during my time at Mayo (you had no idea scans were so hilarious, did you?) was the introduction of a new species to the ophthalmology waiting room – a child. Yes, a foreign species indeed, as I am usually the youngest patient in the room by a good 20-30 years. It was refreshing and entertaining, to say the least, but no more so than when the lad took out a laser pointer and began playing with it. I had to leave for a moment so I could redo some pictures that the tech in training didn’t get quite right – and the only thing more fun than looking directly into an industrial strength floodlight while a tech tells you not to blink is doing it twice – but when I staggered, half-blind back to the waiting area, I found Rich sitting with his lips firmly pursed together, trying not to laugh. Apparently, the boy continued to play with the laser pointer after I left. As he directed it around the walls, ceiling and floor, it caught the eye of a woman who, after following the dot of light studiously, pointed it out to her husband, who proceeded to also track the mysterious red dot. One by one, anyone who wasn’t too dilated to see it joined the audience, mesmerized by the constantly moving orb, never seeing that the source was the little boy. The end result was a room full of white heads moving in perfect unison as they followed the dot – much like those YouTube videos of cats doing the same. And to think I missed it. Dang.

The levity was appreciated, as the time at the end of the day in the ophthalmology waiting area is always the most fear-filled time. Unlike the earlier parts of the day where we move from building to building for various tests, this period of 3-4 hours involves sitting in a special (and by special I mean ugly) waiting area, and periodically being called for eye tests. Test and wait, test and wait, test and wait… And with each test we count down until the tests are over and we see the doctor for the results. Oh, and when we finally see the doctor it’s not The doctor – it’s one of his fellows. The fellows do a complete eye exam, and pour over charts, pictures and things on the computer screen written in such a small font that even Rich with his non-dilated eyes can’t read it…and they tell us nothing. We are dying inside, and they are looking at all the results that will determine my fate… in total silence. It’s horrible. I sit and shake and sweat, even though my hands are ice cold, and they say nothing. Until this last time. I must admit I found myself initially doubting that this particular fellow was even old enough to be a doctor (wow, am I that old? Doctors are looking young to me?), but this angel walked in, sat down, looked me in the eye and pronounced, “your scans all look good, let’s just get that out of the way.” And she smiled the sweetest smile, adding, “I know that’s what you’re waiting for.” Um, YEAH! Oh, sweet relief! So then she did all the things the fellows usually do, but I didn’t care how long it took, because I knew my results. Ok sure, I didn’t know anything about my eye, but the cancer hadn’t spread, so who cared? Not me. “Text everyone” I mouthed to Rich, and he began to happily tap on his phone while the the doctor completed the exam. Seriously, I can’t begin to describe the relief.

So I wasn’t worried at all and could fully enjoy it when my oncologist sailed into the room, smiling broadly. “You’re doing so well!” He exalted. The only glitch, if you could call it that, is that my tumor is beginning to bleed around the edges – totally normal for a shrinking tumor. Yes, you heard that right folks, the tumor is continuing to shrink! So that’s good. But the bleeding means I have to start Avastin injections so it doesn’t hemorrhage and cause me to lose all the sight in that eye (because I do still have some, and it would be nice to keep what I have). That’s not so great, but it is what it is. Did I mention the injections are given directly into the eyeball? Yes, commence squeamish writhing. I’m sure they’ll numb me up, but it’s the gross out factor that has me concerned. I’ve tried to look up the procedure so I can know what to expect, but I end up awash in heebie jeebies every time, so I’m done researching. Like I’ve said, I’m tough about physical pain, but I’m a total ninny when I’m grossed out.

Overall though, the appointment was going swimmingly, as we all celebrated my clear scans and shrinking tumor. Then I wrecked it. “So, about my RA meds….” I said innocently enough, and that was it. He had indeed received the note from my rheumatologist about going halfsies on the plaquenil (like the oncologist had suggested last time) and adding another drug, with his permission. He had received it, but hadn’t read it apparently, because his assistant had to point it out to him. For whatever reason, he gets angrier about the plaquenil each time we talk about it, and this time he was massively ticked. He started going off about potential retinal toxicity – “and you’ve only got one good eye!” So here I thought he was going to be pleased that the rheumy listened to him and cut my dose in half, and instead he’s on a tirade about why I shouldn’t be on it all. “So what about the sulfasalazine that my rheumatologist is recommending in addition to it? Can we do that?” I asked weakly. “Fine, fine,” he grumbled, “But I hate that plaquenil. You can do 200 mg one day, then 100 mg the next and keep alternating. But I don’t like it.” Ok… “Soooo if you don’t want me on the plaquenil, what else can I take?” I pressed. He threw his hands up in exasperation, “Ask your rheumatologist! That’s his job!” Oh ugh. Seriously, just ugh. I totally understand where each of them is coming from though. Dr. P. wants to keep me alive and save my vision. Dr. W. wants to keep me from ending up disabled. I get it. But it’s tough being in between the two, especially when you don’t have a medical degree. Dr. P. sighed, rubbed his face and wearily sat down, “I just wanted to be happy about your case,” he said softly, “We had good news and I just wanted to be happy.” He’s a good guy, he really is. And when you treat a cancer that kills half the people that get it, I’m sure you have to deal with plenty of bad news. So I didn’t push it any further – and really, there wasn’t anything to push. The whole 200/100 alternating dose thing was going to be a pain, but whatever. I’d talk to my rheumy about it later. For now, there was a triumphant blog post to write and a celebratory martini to enjoy.

I did call my rheumy’s office the next day, and just heard back that we’re ditching the plaquenil all together and trying to go with just sulfasalazine. We’ll see how that all goes. In the meantime, I’m scheduled to start the eye injections on the 22nd. Hopefully I will be reporting back that it was no big deal, and that I’m super excited for my next one.

So that’s the scoop from last week’s scans. I’m off now to make one last college visit with Riley – well two visits actually, just on back to back days, so it’s really just one trip. The poor kid is having a terrible time deciding on a school, to the point that when one of our friends asked him what he’d be looking for this weekend he deadpanned back, “A sign.” He’ll figure it out, I’m not worried, and all the schools are awesome, so he really can’t screw this up. But I have to say, I’m just sorry to see these mother-son trips end. They’ve been such a special time for us together as he prepares to take this huge leap to the next chapter of his life. I’m excited for him, because he is so ready and he’s going to do great, but I’m sad for me. Because I’m going to miss him so much it hurts just thinking about it. A bittersweet time, to be sure. And in the back of my heart always resides an intense gratitude that I get to be here for all this.

Life really is good. Tough at times, absolutely, but most definitely good.

Off now to look for signs…

Martini time!

/ Jen / 11 Comments

imageWell you can’t say you weren’t warned about the brevity of this post. My eyes are indeed still blurry, but my scans are CLEAR! I’ll elaborate in another post, but the bottom line is my liver and lungs look good, and my tumor is shrinking. It’s also bleeding, so I will now be getting Avastin injections in my eye to prevent a major hemorrhage that would leave me totally blind in that eye. Yes, I’m grossed out. No, I’m not really thinking about that right now. Because, um, did I mention that my scans are TOTALLY CLEAR? Because they are. In case you missed that. Oh, and my oncologist and my rheumatologist completely hate each other, but I don’t care right now. Because I just renewed the lease on this body, and I am pumped. Shoot, now I’m going to have to lose that vacation weight…

I wish I could explain it or describe it, because it was beyond amazing, but I absolutely felt your prayers and thoughts today. I am so humbled and grateful, and “thank you” doesn’t seem quite adequate, but it will have to do until I think of a better way to express it. Thank you. Thank you for coming on this journey with me, for lifting me up, for supporting my family, for loving us and encouraging us. Thank you for your endurance and your perseverance. Thank you for being awesome. Because you are.

Now if you’ll excuse me, it’s martini time…

Big Things

/ Jen / 11 Comments

“Well we pretty much ate Oahu.”

My son’s observation as we were leaving Hawaii Sunday night isn’t much of an exaggeration. We really did sample everything we could (except Spam. Because that’s just wrong. And it’s made here anyway), and while we’re all coming home a little heavier, our spirits are most definitely lighter. It was just so exquisitely beautiful there, and so relaxing to simply be together as we enjoyed everything. And I can honestly say that I didn’t have any sleepless nights worrying about my upcoming scans. Seriously. I think we need to go to Hawaii before all my Mayo trips from now on.

Speaking of which, I’m at Mayo now. Did my blood work today, then we start bright and early with the MRI and chest X-ray tomorrow morning, followed by all the eye exams, pictures and ultrasound in the afternoon. And finally, the moment of truth with the oncologist at the end of the day. If all goes well we’ll be home in the early evening, and I will be posting very good news here sometime tomorrow night. I have rehearsal for our church’s Easter services as soon as I get back, so don’t worry if you don’t hear from me right away. And it’ll probably be brief – something along the lines of, “My eyes are still blurry, but my scans are clear! Having a celebratory martini!” Or something like that.

In the meantime, I thought I’d share one of my observations from my last Mayo day back in September. I never wrote it down, but I found myself thinking about it at length on the plane ride back from Hawaii. And I wonder whose stories I will cross paths with tomorrow.

Everywhere I go at Mayo, I’m surrounded by people going through Big Things. Most of the time I can only study their faces and body language and wonder what their story is, but on a few rare occasions I’ll learn a little about what they’re going through. The couple with the newborn baby that we met in line at the coffee shop, smiling and almost giddy, hardly able to even believe what they were telling us: that she had received a liver transplant only a year or so before, and then got pregnant and gave birth to a healthy baby. I imagine that after so many desperate, awful visits to Mayo before her transplant, this routine check up felt downright triumphant. We ooh’d and ahh’d over their sweet baby, and allowed ourselves to share in their joy. Because for the most part, we don’t see a lot of joy at Mayo. We haven’t seen a lot of outright grief or despair either. Mostly it’s just variations on grim expressions, set jaws and contained emotions. And nervousness. Lots of that. And as I said, most of the time I can only wonder what brings them here, but I know that most likely it is a Big Thing. As I was waiting for my MRI last time, I found myself sitting with another woman about my age. It was the secondary waiting area, so we were prepped and in our gowns. I noticed that, like me, she was nervously fidgeting while trying very hard to not look at her IV, and when she cracked a joke after one of the nurses left, I knew I’d found a buddy. We began to exchange humorous comments about this and that, laughing nervously together. She told me they were running about a half hour behind, so we came up with ideas for activities all of us could do while we waited – a hospital gown fashion show, a dance off – we thought we were hilarious. We never asked each other why we were having MRI’s, but it was understood that keeping the mood light was a good thing. The others in the waiting room, if they didn’t find us hysterical, at least tolerated us. We were probably a good distraction. And then a woman entered with what looked like her mom, which was odd because no one else had their significant person with them. The woman looked like she was in her late twenties or early thirties, and she went over to a chair and just stood there and stared at it. Her mom sat down in the chair next to it. “Come on, sit down, it won’t be that long” she beckoned to her daughter. “Actually, they’re running about a half hour behind,” my comedic partner piped up, “But it’s ok, we’ve found some fun things to do.” Much to our disappointment, neither the woman nor her mother seemed excited or amused by the offer. In fact, the woman got extremely agitated and began to pace. “I can’t do that. I can’t!” She repeated as she paced. I scowled. Well she was no fun at all. And why couldn’t she wait? What, did she think she was better than all of us? Please. We all had to wait, suck it up. She turned tearfully to her mom, “I can’t wait,” she said again. “You have to wait,” the mom calmly responded. The woman paced a few more times, then announced “I’m going to the bathroom,” and marched out. “It’s just around the corner,” the mom called sternly after her, “don’t go any farther than that.” Silence. “Flight risk?” my buddy quipped. The mom wearily turned to us and explained that two years ago doctors had told her daughter that they had done all they could do and that she should go home and enjoy her children. She had already lasted longer than anyone expected, but still… she was young… and her kids were young. This MRI was most likely going to tell them that the end was coming soon. We sat in stunned silence as we listened. No wonder she couldn’t wait. My comedic partner bowed her head and whispered exactly what I was thinking, “I wish I could give her my spot so she wouldn’t have to wait.”

Everyone at Mayo has a story. And really, when you think about it, everyone everywhere else has a story too. The woman in Target, the guy at the car wash, the kid at the mall – maybe they’re not all facing a terminal illness, but any one of them could be dealing with a Big Thing. I wonder how quick I am to judge sometimes, just like I did in that MRI waiting room, and I wonder how things would be different if we all judged slower and loved quicker.

And really, with the exception of picking up hitchhikers holding chainsaws, you can’t go wrong by being nice.

Looking forward to sharing good news with you all tomorrow night. Thanks so much for all the love and support you continue to shower upon my family and me. Your prayers, positive vibes and messages sustain us and lift us up in ways we can’t fully express. We are blessed, and we are grateful.

The scoop

/ Jen / Leave a comment

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…

Tom Petty was right….

/ Jen / Leave a comment

The waiting really is the hardest part. A number of friends have suggested that I get something from the doctor to help me sleep. You know what the doctor can give me to help me sleep? Results! But we found out yesterday at Mayo that no one is exactly sure where my results are (!). I had to battle with my primary doc’s office last week to even get the tests scheduled because they couldn’t find the orders (turns out they were sent to my obstetrician. Of course.), and now they can’t find the results. Rich called the scheduler at the retina specialist yesterday and she said she’d try to track them down, but it was the end of the day at that point. The oncologist’s nurse said that if we don’t show up to Wednesday’s appointments with the results (not just the films, the radiologist’s report), they’ll have to repeat the tests. I really don’t want to spend another 45 minutes stuffed in a tube (and I doubt our insurance would be excited about it either), but more than anything, I just want to know. The waiting is eating all of us from the inside out.

Which brings me to finally telling you about ocular melanoma. At this time last week, I had never heard of it. Now it consumes my every waking thought. Yesterday we briefly talked with my oncologist’s nurse. As she tapped at the computer, she asked, “So I assume you’ve been on the internet?” “Of course.” I replied. “Don’t do that anymore. It’ll scare you,” she replied, not looking up from her typing. Yeah, too late. I’ve looked it up, and it is indeed terrifying. I will share what I’ve read from reliable sources, but keep in mind that I haven’t spoken to my oncologist yet, and he is supposedly world renown in this field, so his information will be more accurate and complete than what I’ve learned courtesy of google.

(and after rereading this, I’m almost thinking this is drinking game material – drink every time you read the word “metastasize”…)

Two things about ocular melanoma: 1. It is extremely rare. It affects 6 out of every 1 million people (and I can’t win the lottery…), and 2. It doesn’t spread like other cancers, and that’s what makes the issue of whether or not it’s metastasized such an important point. If it metastasizes (and there is a 50% chance it will), it travels through the blood, not the lymph system. This makes it impossible to stop – you can take out lymph nodes, but you can’t take away the blood that is spreading the cancer. Bluntly put, once it spreads there is currently no cure. With aggressive treatment, patients can gain some years (“good years!” one website cheerfully promised), but technically it’s stage 4 at that point. This is the main reason I’m freaking out about the results of my tests. I want to know if the clock has started ticking or not.

Now, the flip side of all of this is the other 50%: it’s really good. Awesome, even. Apparently these tumors fall under two genetic classes: Class 1 (divided into 1a and 1b), which will most likely never metastasize, and class 2, which will almost always metastasize. There actually is a way to test the tumor to find out its genetic makeup, and Mayo does offer the test, so at some point I expect to know which kind I have. I don’t think that is something that will come soon though, and that’s fine. Right now I just want to know where we’re starting from in this battle. If my tests show nothing has spread, then we can focus on going after the tumor (more about that in a bit). I think it’s during my first surgery that they’ll do the genetic test, and I’ve read that results can take up to a month. But that’s fine, one thing at a time. And the thing is, in patients who have the aggressive, spreading type, things might not metastasize for years. I read (yes, on the internet, where I’m not supposed to be) of patients whose cancer didn’t metastasize for 10 years or more. And they’re learning more and more how to aggressively monitor and treat people whose OM has metastasized. So while it’s bleak, it’s definitely not hopeless.

I, of course, am hoping to fall in the 50% of patients with the “good” kind, so let’s talk about that. In this case, we go after the tumor, then go on with life. I’ll have significantly reduced vision in my left eye from the radiation, and have to have regular scans just in case something funky happens, but life would be pretty fantastic.

How do we go after the tumor? It’s called brachytherapy, and basically involves placing a metal plaque containing radioactive seeds onto the tumor. It looks like a bottle cap and is held in place with temporary sutures. Then, I sit there (in the hospital, I don’t get to go home in between) for 5 days, before they surgically remove it and send me home. I’m currently scheduled for my first surgery on Dec 18, so I’ll be in the hospital until Dec 23. I was relieved to learn yesterday that the surgeries are done under general anesthetic. Because I’m pretty sure I don’t want to know how they plan to get that plaque in place. Due to the radiation, children under 18 and pregnant women can’t visit me, but anyone who wants to make the trek down to Rochester is welcome to come. I think I’m going to be really bored, so I would love company.

So there, that’s our lesson for today, Ocular Melanoma 101. Once again, let me offer the disclaimer that I’m not a medical professional, so I may have gotten something wrong. I’m a doctor’s worst nightmare: a patient with a vivid imagination and access to google.

Emotionally, we’re all doing the best we can. Riley will be going to his friend’s funeral today, so please keep him in your prayers. He is, however, talking with me a lot about his feelings, which I think is really healthy. Rich and I are still struggling to sleep and eat, but I really think things will be better once we know something. Even the worst news is better than the unknown at this point. It’s difficult to figure out how Tessa is handling all this – for as talkative as she is, she tends to “stuff” things that are really stressing her out. I know it’s upsetting her, but I don’t think she’s found a way to express it yet.

Just praying for grace and peace as we wait. I love the song “Strong” by Pocket Full of Rocks…

There are shadows of things unknown
And fear can whisper with a voice so cold
But I know Your hands won’t let me go
I hear You say, “You’re not alone,”

We know we’re not alone. We have God walking this alongside us, and we have the most incredible friends and family surrounding us with love and prayers. We are grateful for all of you.

On our way to Mayo

/ Jen / Leave a comment

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

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

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

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

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

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

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