The day I (almost) lost it

Hey there! Been busy since my feet hit Lakeville soil again (or rather Lakeville snow), but I always know it’s time for another update when I start getting the emails and texts: “soooooo, how are you??”

So how am I? Physically, pretty good. The eye got a lot better for the first couple days I was home, but hasn’t changed much since then. The swelling has gone down enough that it’s mostly open, so I’m starting to lose that permanent Gilbert Gottfried squint. It’s still puffy and really red, and thanks to my thrice daily “goop” applications, it’s always a bit greasy looking. Actually, it looks a lot like I have pink eye – complete with nasty yellow crusty stuff – so you can imagine the vast amount of personal space I’m getting when I go out in public. I’m getting used to wearing the patch at night, and so far I haven’t accidentally waxed an eyebrow removing the tape in the morning. My vision in that eye is super blurry, and it’s hard to say how much of that is the aforementioned goop and how much is surgery, radiation, etc. I get headaches when I do too much reading, as my eyes are still trying very hard to work together, even though the slacker eye isn’t helping much. But, the tradeoff is that the depth perception is a lot better now that the other eye can at least see shapes and stuff.

So that’s the physical stuff. You can skip the rest if you don’t want to hear about my mental state (seriously, I won’t know, it’s ok). Mentally and emotionally, I have been all over the map. Some days I feel incredibly strong and hopeful and even confident, and other days I get ambushed by the “Holy crap, I have cancer! I could actually die!” fears. And those fears have a kung fu grip when they come. Take, for instance, yesterday.

I started out with the best of intentions. I decided I would seek out the support of fellow OM peeps and educate myself by joining the patient forum on the Ocular Melanoma Foundation website. I got on, started to poke around and… panicked. Everything I read made me second guess all of the choices we’ve made, question my doctors, my treatment, my prognosis. Heart racing, hands shaking, stomach twisting, I started reading over my scan results and reports. I googled terms, searched them in the forum discussions, and worked myself into a good old fashioned panic attack. I really did mean well, I tell you! I was looking for support, information, something to ease my mind and my spirit. What I got, however, was the fear with the kung fu grip. And that’s when I learned a very important lesson: there is a very fine line between being an informed patient and an obsessed patient…and a paranoid, freaked out mess.

But here’s where it gets better, and where I learned another important lesson: use your resources. I started thinking about everything and everyone that could help me, and with the tiny bit of strength that I had left, I closed my iPad, put away my medical file and notebook that I had been feverishly writing in. I got out my new, beautiful prayer shawl (thanks Jay!), my scripture book written just for me (thanks Steph!) and started reading and praying (THANKS GOD!). Then I pulled up the email address of my friend’s mother-in-law, who also has OM, and sent her an email (thanks Kerry!). She called me immediately (thanks Brenda!) and sweetly calmed me by sharing her story – and the fact that she’s almost 10 years out from her diagnosis and very much alive. She has the same oncologist I do, and she’s been pleased with her care from both him and from Mayo. Before saying goodbye, she admonished me, “Now this is what’s critical…” Oh no. That’s how this whole panic attack started – people on the forum saying it was critical that you do this, don’t do that, have this test, go to this specialist (or you’ll die!)…my stomach tightened, I braced myself. She continued, “What’s critical is that you live your life. Enjoy your family.” Yeah…. I mean, YEAH! I can do that. I will do that. No sooner had I hung up the phone than our neighbor Linda called to ask if she could bring dinner this week. Later I got to talk to my sweet parents while I walked (slowly, don’t worry) on the treadmill. And just like that, my super crappy day was a darn fine day. Darn. Fine.

So I’m learning. I’m learning that sometimes wriggling out of fear’s vice-like grip is as simple as turning off the iPad. And that hope is a choice that you have to make every day – sometimes multiple times on the tough days.

Most of all though, it’s on the crappy days, the tough ones where it’s hard to make that choice to hope, that I need to turn to my resources. Because I have them. I have a LOT of them, in fact.

I am very, very blessed. Thanks to all of you for being my resources, for lifting me and my family up in prayer, sending positive thoughts, good juju, whatever – I feel it all, and I am grateful.

Merry belated Christmas!

Merry Christmas, one day late!

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

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

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

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

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

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

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

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

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

Sunday, December 22

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…

On our way to Mayo

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

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

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

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

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

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

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