Sinking the battleship

Hey everyone, sorry for the wait. I really did intend to do a more comprehensive post last night, but once we got home I was so exhausted all I could manage was opening a bottle of wine and making dinner (in that order, thank you very much. Ok wait – first I hugged my kids, and then I put on sweatpants. THEN I broke out the booze. I know, I know, nice way to celebrate a healthy liver…). And now I have family visiting, which is awesome for me, but not for anyone who was hoping to get some more details on my day at Mayo.

It’s a weird, surreal thing being at Mayo. It’s like time completely freezes. You never go outside because all the buildings are connected by this huge underground level. And there are shops and restaurants down there, along with tons of other things, so you really don’t have to leave. And all around you is this mix of sterile, professional doctors and administrator-type people, and tense patients and families. There is a palpable sense of emotions being held back as we all swim in this weird dimension where there is no time. Which is probably why it is such a jolt to return home, to a place where time as been happening while you were gone, and now you have to somehow re-enter it. It’s like suddenly having to jump onto a moving treadmill. Which is hard, because after all the physical and emotional exhaustion, all I want to do is find a quiet place to just sit and reflect. To exhale slowly and say to myself, “Ok, so what really just happened?” I feel like I should take a walk in the woods, or sit on a bench overlooking a lake or something. Instead I jump onto the treadmill and sprint to catch up. It’s all good – I’m grateful to be living a full and busy life – it’s just an awkward transition sometimes.

So it was a looooong day, but it was only one day (not two, like before), which was very nice. All of my did-the-cancer-spread tests were in the morning, then we had a break before we headed up to ophthalmology for the rest of the day. That’s always tough because they turbo dilate me right away, leaving me with nothing to do but observe the other people in the waiting room (more about that in a later post) and listen to bad musak (“Nadia’s Theme” AGAIN! Seriously, they need to get some more uplifting music).

Some things about the opthamolgy department don’t change. I see a lot of the same nurses, doctors and techs. I was in the same exam room for my visual acuity check as I was last time – I know this because there’s still a sticky note on the desk with words scrawled in red sharpie: “If you ‘borrow’ it, bring it back!” The same woman dilated me, and the same guy, ZB, did my eye ultrasound (maybe it’s Zeebee or Zibi, I don’t know. By then I can’t read name tags). He makes having an ultrasound wand pressed really hard directly onto my eyeball actually rather tolerable – a sweet man with an awesome Russian accent, who likes to whisper to himself during the exam. “Now I have to find scan I like and I measure…” He always makes a joke about the chair having an eject button. And I know that when I see Dr. Pulido, he will be wearing a cool tie, cooler glasses and fun socks. Oh, and my favorite: I know that at the very end of my stressful, emotionally exhausting day, when I finally know my results and am walking out of the exam room, Dr. Pulido’s assistant Kim will give me the world’s most awesome hug.

I find all this sameness very comforting.

I was also comforted and encouraged by all the messages of support and love – comments on my post here, facebook messages and comments, emails, texts and phone calls – it was amazing. I felt so completely surrounded (in a good way), it just warmed me from the inside out. So thanks to all of you who reached out. And thanks to everyone who sent thoughts and prayed for me. I continue to be blown away and deeply humbled by that. I felt those prayers, I know I did. And the ways God has shown up big in this whole thing is material for another post. Suffice it to say, He rocks.

Ok, so details – you thought I’d forgotten about that, didn’t you? All right, you may have been correct. I did get off on a tangent a bit there. Well as I nervously sat there in the exam room for my last appointment of the day, waiting for my results, with my heart racing every time I heard footsteps near the door, suddenly Dr. Pulido threw the door open and burst into the room. Before he was even fully in the room, he grabbed my hand excitedly and exclaimed, “You’re doing GREAT!” Oh, those are sweet words to hear, and the best way ever to see your oncologist! He proceeded to tell me how fabulous my scans and lab work looked, and then he pulled up the pictures of my eye – side by side with pictures from back in December. Quite honestly, I’m never really sure what I’m looking at. It kind of looks like the Death Star with a big, ugly cloud of smog over part of it. But Dr. Pulido was very excited to show it to me. The tumor is thinner now, which is fantastic, and the base hasn’t gotten any wider. Apparently that won’t shrink until the tumor gets thinner, and this is normal, so it’s all good. But what he was positively ecstatic about was the color. “Do you see the change?” he asked. Ummm…yes? It was pretty subtle to me, but to his trained eye it was a dramatic and definititive shift to a “battleship gray” color. “That means it’s dying. We hit it hard.” Sinking the battleship. Oh yeah.

So my tumor is sinking – I mean dying – and my scans showed the cancer hasn’t spread. I don’t have to go back for 6 months now. The only negative bit that I encountered in the whole thing was the realization that my oncologist and my rheumatologist do not see eye to eye on how to treat my RA (oh ugh, totally unintentional pun). So this is going to be an ongoing project: trying to bring the two parties to the table to negotiate. So far, we’ve been doing this whisper-down-the-lane thing with me and the doctors and their asssitants, but I’m going to have to find a way to get them to talk directly with each other. Maybe I’ll have to enlist my fearless internist to act as secretary of state, brokering a deal. Whatever it takes. We just need to find a way to treat my RA without compromising my immune system to the point that I’m at greater risk of the cancer spreading. And it would help if they agreed.

But, that’s a project for another day. I’m still celebrating the sweet victory of clear scans and a tumor on the run. I’ve never been a big fan of the color gray, but I kind of love it now.

Thanks again for going on this journey with me! I hope you’re savoring the victory too. Score one for my battleship-sinking army!

Scans tomorrow

Well it’s finally here – the next round of scans. It’s funny how far away September 29th sounded initially, but it seems to have arrived rather quickly. The bad news is, I’ve been insanely busy and preoccupied in the past month…the good news is, I’ve been insanely busy and preoccupied in the past month. No time to sit around and worry about the upcoming tests. And that’s probably a good thing.

Tomorrow we head to Mayo first thing in the morning for what will be a long day. I’m grateful, however, that they got me scheduled for all of my tests and appointments in one day (last time it was 2 days). I will be sure to post here as soon as I have eyes that can focus, but keep in mind that can take a while – ah yes, the turbo dilation. I’ve missed that. They use at least three different kinds of drops to dilate me, and then numbing drops before the eye ultrasound, leaving me with nothing to do in the waiting room but stare at the floor tiles and listen to the world’s worst musak. I mean honestly, last time I was there, the first song I heard as I nervously awaited my first test was “Nadia’s Theme.” Come on, nothing says “you’re going to die” like Nadia’s Theme – and a bad musak version of it at that. Yes, someday I will take over the Mayo Clinic, and the first thing I will do is change the music. Just to something a little less morbid.

I have, however, mastered the art of not panicking in the MRI: the eye mask. Yes, as simplistic as it sounds, I have found that if I can’t see that I’m being stuffed in a tube, I can pretend that I’m not in one. It works, don’t judge. It’s a little harder to completely zen out and go somewhere else for liver MRI’s, though. After putting the world’s biggest needle in your arm (the nurse warned me last time. Holy cow, she wasn’t kidding), they put this cage around your chest and then you have to follow their instructions to breathe or not breathe. So I can forget about sleeping, but between the cancer and my hip, I think I’m getting the hang of this MRI thing.

Speaking of my hip and/or high metal levels, there’s nothing to report there. I’m still following orders and not running, and we’ll repeat the blood tests at the end of October. If my levels are still high, we’ll repeat the MRI (MRI’s!!!! I totally LOVE those!) and then go from there.

As for the rheumatoid arthritis, my oncologist said no to methotrexate, but agreed to let me take Plaquenil. And as much as I don’t care for the side effects of prednisone, that stuff was magic. Magic, I tell you. I don’t think I really had a sense of how much function I had lost in my left hand until I got it all back. It was totally worth having to pee every five minutes. I’m serious. And since the Plaquenil takes months to start working, my rheumatologist gave me more prednisone to keep on hand in the event that I have another flare up. So while mentally I’m still trying to wrap my head around this newest addition to the three ring circus that is my health, physically I’m doing pretty well.

Which leads me to how things are going emotionally. Honestly, I’ve been doing well for the most part, and I’m feeling pretty good about tomorrow. I ended up having a liver ultrasound last month due to some funky bloodwork, and everything looked good. That doesn’t mean there’s nothing there, but it does mean there’s nothing big there. As warped as it sounds, I find that comforting. And I think it’s just going to take time to get used these scans – both the anticipation of them and the actual tests. For instance, I’ve already learned that once all my scans and tests are done and I’m finally, nervously sitting and sweating in my oncologist’s exam room, the door is going to open at least once, maybe twice, and someone who is not my oncologist will come in and do an examination. Seriously, I’m waiting breathlessly for my results, and the door moves – suddenly my heart starts beating so fast I get this buzzy feeling – but the person entering the room is merely one of my oncologist’s fellows, who can tell me nothing. They do the same exam that the nurse did and the oncologist will do, and while I understand that this is important for their education, it’s unnerving to say the least. But I’m expecting it now, which makes it a bit easier.

The other thing that makes all this easier is the massive support I’m receiving. I am ridiculously blessed with the most amazing friends and family. People who are willing to laugh with me, cry with me, pray for me, let me vent, encourage me and inspire me – it’s probably not easy walking this journey with me, but they’ve never abandoned me, never even rolled their eyes at me (or at least they’ve been kind enough to wait till my back is turned…). I feel like I have an army surrounding me.

So, army, if you feel inclined, I would welcome your prayers for tomorrow. I’m praying that the scans will show that the tumor is definitely shrinking, and that the cancer hasn’t spread. If you would add your voices and hearts to that prayer I would be grateful. Also, I’d appreciate prayers for my kids – that they will have peace tomorrow and be able to go about their classes and activities without the distraction of worry.

Thanks for taking the time to read this, and for your support! Hopefully I’ll have good news to share tomorrow!

The Crazy Lady has left the building!

Yes friends, I kicked the crazy lady to the curb, just before hopping into the car with Rich and speeding out of the Mayo parking ramp. After two very long and stressful days, we are outta here! (And before you worry that I assaulted someone, the crazy lady is a reference to my last post. Fear not. I totally passed my psych evaluation.)

The news is good! Very good! My chest X-ray, blood work and liver MRI came back clear, and my eye scans look promising. The tumor has shrunk in height, but not in width. Dr. Pulido said it’s very normal for tumors to shrink in height first and then in width, so this is fine. The one thing that was a little amiss was some fluid buildup around the tumor, causing the width of the tumor to appear wider when it’s probably the same. For this reason he wants to see me again in 5 months, rather than the typical 8 months, but assured me that he’s just being overly careful. He’s not worried, so I shouldn’t be either. In fact, he kept repeating “you’re doing well” throughout our entire appointment. He finally told me it was because I totally failed the handshake test. “When I came in and shook your hand, it was freezing. You’re nervous, I can tell.” Uh, yeah. Little bit. Feeling weak, a little numb and kind of buzzy (they turbo dilated my eyes again), I got up to leave and his assistant Kim, who I love very much, hugged me and whispered “congratulations.” And that’s when I lost it. Because that’s when it started to become real. After so many sleepless nights spent rehearsing possible scenarios in my head, the reality that I had just gotten the best one washed over me with that hug. The elation would come later. This was pure relief.

There is nothing more maddening than having THE BEST NEWS IN THE WORLD and not being able to share it. As I mentioned though, they had turbo dilated me, so I couldn’t see anything. I thrust my phone at Rich and quickly dictated a brief Facebook post (after calling my parents, of course. I’m pretty sure my mom’s been holding her breath for the last two days. Breathe, Mom!). And now that the knots in our stomachs had relaxed, we came to the collective realization that we were starving, so we went to grab some food. As we sat at the table, my phone kept lighting up, and each time it did and to Rich’s great enjoyment, I impatiently held it to his face and begged him to read it to me. This continued for the next few hours, until my eyes recovered enough to read the messages myself, and just about when I think Rich’s patience with being my seeing eye husband was wearing thin.

But oh, those messages! Over the last few days I have just been so overwhelmed by all the ways people have reached out to support me. The caringbridge comments, Facebook posts and messages, texts, emails, calls – I have never felt so completely surrounded and held close (except maybe when I’ve been in an MRI machine, but that’s different). I can’t even begin to express how thankful I am for those constant reminders that I’m not alone in this fight, those repeated assurances that no matter what happens, I am loved and supported. I’m also completely humbled by all the people who don’t even know me, but have faithfully lifted me and my family up in prayer. I wish I could hug you all.

Speaking of hugs, we’re almost home and I think I have some happy kids to hug. Of course, this is just one of the early miles in the marathon that is my cancer fight, but I just climbed a major hill, I’m on a really good pace and I’m looking forward to an easy, flat section for the next 5 months. Maybe a water stop too – it just won’t be Gatorade in my cup. ☺️

So grateful for you all,
Jen

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

Had my surgical follow up appointment today at Mayo and everything looks good! Dr. Chen said my eye is healing up really well. There were two sutures that hadn’t dissolved, so of course I promptly began to squirm in anticipation of having him remove them, and questioned him twice as to whether or not he had used enough numbing drops. It actually turned out to be a case of the anticipation being worse than the event, because it really wasn’t a big deal. It’s just hard to calm down and find your happy place when someone is coming at your eyeball with tweezers. He couldn’t get the second one because it’s “buried” in my eye (goodbye, happy place!), but said it was fine to leave it there (whew!). I didn’t ask but I assume that it will either dissolve eventually or be easier to get later on.

I asked him about the floaters that have appeared this past week (more on those later), and he said it was probably a result of the radiation. He got out another 5 million watt light, checked things again and said that he did see some blood around the edge of the tumor, and that could be the cause of the floaters. And why am I excited about blood around the edge of my tumor, you ask? (Ok you didn’t ask, but pretend that you did) I’m excited because he said that in his observation, it looked like the tumor might be starting to contract! Can I get a “Hallelujah” from someone?!? Yeah, cue the music, this girl’s doing a happy dance! I’ll take a “might be” any day – because “might be contracting” means it is definitely not growing, and that is very good.

He also said I could throw away the eye patch that I’ve been wearing to bed every night since the second surgery (I might burn it…), stop using the eye goop and…. no more activity restrictions! Woohoo!!! Gimme something heavy to lift!

Rich and I like Dr. Chen a lot (and not just because he was the bearer of good news, although it probably made us like him a little more). We were immediately impressed with his calm, confident air when he saw me during my hospital stay. It’s really hard to put my finger on it exactly – he’s really likable and accessible, yet completely professional, and just gives you the feeling that he totally knows his stuff. And today, like Dr. Pulido, he sat there patiently and answered every single question we had (and I had a lot).

So barring any unexpected complications, I will not be returning to Mayo for another 3 months. That’ll be a scary one, because it’s a ton of scans and tests and such, but doing that every few months is going to be my new normal, so I’m going to have to find a way to make it work. But that’s down the road, so I’ll work on that later. Right now, I’m busy with my happy dance…

This past week brought some major improvements to my eye, especially cosmetically. While it certainly doesn’t look normal, it doesn’t look infectious and it doesn’t look like my husband beats me, so that’s a significant improvement. The white of my eye is taking on a lighter pink hue and approaching – dare I say it? – white. My lid is still a bit swollen and droopy, but one nice thing about wearing glasses is that you can’t see the eye as well, so it’s not as noticeable. Oh, and my eyelashes are starting to grow back! Oh happy day!

My trouble with looking at computer screens lasted only about a week (but oh, that was a painful week. I’m glad that’s over.). The new thing that surfaced last week was the appearance of floaters. In addition to some big fuzzy suckers randomly sailing by my line of sight, I started seeing what initially looked like bugs. No seriously, the multiple black specks, when seen in my peripheral vision looked exactly like bugs scurrying along my dinner plate, my desk, my bathroom counter – it was unnerving to say the least until I got used to it. Still have ’em, but now they’re a reminder that my tumor could already be responding to the radiation, so I don’t mind them quite so much :).

I followed up my day at Mayo with a music rehearsal for “Godspell”, so it’s been a thoroughly wonderful day. Oh – and I made a vegan taco salad that my family actually really liked! Victory! Yeah, the vegan thing – that’s probably material for a future post. Starting the first of the year I made a major change to my diet, in hopes of making my body less hospitable to cancer. Trying to eat more vegan, more organic, less processed, less sugar, less caffeine… it actually hasn’t been as hard as I feared, it’s just time consuming and labor intensive learning a new way of eating. Yes, it’s definitely material for a separate journal entry, because while there have been lots of successes with it, the failures have been pretty funny and definitely need to be shared.

Thanks again for walking this journey with us. It’s an absolute delight to share the high’s with you, and an incredible comfort to share the low’s. We are so grateful for your presence with us on this path, whatever the terrain. It’s incredibly humbling and profoundly wonderful.

Now to resume that happy dance…

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.

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…

Tom Petty was right….

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.