It’s Fall!

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Hello!

First and foremost, let me reassure you (and you need to imagine this in a Monty Python voice or it just sounds weird) I’m not dead yet! Because I realize that when I go too long between posts (like, say, a full year), people worry that my health has taken a turn for the worse. It hasn’t.

No, I just let it go, inadvertently at first (“Oh! I’ve been so busy I totally forgot to blog!”), and then with a resigned acceptance (“Screw it, I’ll have time to blog in the fall”). And now… It’s fall! But as I wrote about in my post, “The Underwear Always Wins,” (June 9, 2017) well… the underwear always wins (sorry, I’ve got nothing new to add to that, it still does). I allowed myself to get caught up in the “stuff” of life and didn’t write.

And as my youngest child’s senior year of high school, it was kind of a big year for all of us, with a lot of “lasts.” I would love to tell you that I intentionally decided, in some super chill, zen-like way, to put other things aside in order to be fully present during this important year. No, it was more like grace. Once I realized I had let the blog go, I had a choice: I could beat myself up over it, or I could be gentle and decide to go about things a different way. I kept notes on things I wanted to write about, a rambling, stream-of-consciousness document on my iPad called “Blog Thoughts.” Coming back to it, I was at once amused and irritated at the cryptic nature of some of my jottings…

…depth perception is underrated and I have the oven burns to show for it…

…the dog barfed and now I can’t find my slippers…

…friend up/Marie Kondo…

…”I upped my commitment! Up yours!”…

What was I even talking about?? More to the point, why were these things amusing/upsetting/important and ultimately blog-worthy? No idea. So we’re starting fresh here, people.

Speaking of starting, as I get back to this, I am reminded of the first rule of sitting down to write: it doesn’t matter if it’s been a day, a month or a whole freaking year – when you sit down to write, EVERYONE will suddenly want to talk to you. It’s just a fact. Your popularity will know no bounds. My husband comes out of his office, deciding that now – yes, right now! – is the time we absolutely must talk about _____, my kids both text me, people I haven’t spoken to in ages call me. In fact, I just got an automated phone call from the Mayo Clinic reminding me of my upcoming appointment – and I’m pretty sure that in five years I’ve NEVER gotten one of those calls from them before. It is a thing, and I’m sure you all know that. Whatever your project or task, YOU KNOW that the second you start it is the second you become the most sought after person in the world. Yet we persist…

Speaking of Mayo (and I do so love speaking of Mayo…NOT), I have scans coming up in two weeks. Now, I’ve been doing this whole cancer dealio long enough to know that I get just a wee bit nuts in the few weeks before scans, it’s just a fact. The nuttiness varies from time to time, but however it shakes out, I just know that I will never be the best version of myself in the weeks before scans. I’ve tried to fight it, but my efforts have been in vain as I am always just a teensy bit nuts. I’ve just accepted it now. This time, rather than being excessively short-tempered or weepy (my trusty go-to’s), I’ve simply been a space case. If I can hold it, I can forget it. My jacket, my phone, my shoes (true story)…everything of value will get left somewhere these next two weeks, apparently. It’s fine, I guess I shouldn’t be so tied to material things, right?

But no matter how it makes itself known, scanxiety is a thing. Angry, weepy, forgetful – it is what it is, but the one non-negotiable pre-scan practice for me is always Preparing to Hear Bad News. Because as I’ve said before, there’s this warped part of me that feels like if I come into these appointments too cocky or too casual, then BAM, that’ll be when I’m told it’s metastasized and I’m going to die. And don’t tell me it’s irrational – I KNOW darned well it’s irrational, and probably more than a little morbid. But it’s my thing, I’m owning it. I have to rehearse in my head what that news would sound like and feel like. I have to hold my own mortality up before my face and examine it from all angles. It’s become almost a pre-scan ritual for me: “And now is the part where we contemplate death…” While it may sound ridiculously morbid, the odd thing is that it’s actually the opposite. In fact, I would argue that it’s a valuable tool for anyone, cancer fighter or not. 

Once I had finished my initial treatment and was settling into life as a long-term cancer-fighter-type-person, I realized that my ideal state exists somewhere between forgetting and remembering, between hope and fear. Hope, because – well, HOPE. I want to always be someone who sees glasses as half full, and believes in miracles and happy endings. But fear…a little bit of fear can be good too. Not so much fear that I’m paralyzed, but rather enough to put me in motion. Because I don’t ever want to forget for a second that this whole ride could end sooner than I’d like, and I want to live my life as someone who gets that. Someone who doesn’t wait to do all the things and love all the people, someone who isn’t waiting to live. It’s like that “Live Like You Were Dying” song – only minus the riding a bull named Fu Manchu part (I don’t care if the bull is named Sparkles, that just sounds terrifying and is certainly not on my bucket list. But to each their own..)

The point is, I’ve come to see my scans – and all the weird scanxiety around them – as an opportunity to check in with myself, a kind of personal performance review. How am I doing at this life thing? Am I living like I mean it? Or have I forgotten that life is fragile? If I get bad news, am I going to have regrets about the way I’ve spent my time?

On the day I was diagnosed, I spoke with my pastor. It had been just a few hours and I was only starting to gather myself.

“So what are you feeling right now?” He asked. 

“Disappointed,” I snapped back. 

He chuckled, clearly not expecting that response,  “Ooookay, do you want to explain that?” 

“Well. I’m disappointed that this has to be my story now. I’m disappointed that just when I feel like I’m maybe getting the hang of this life thing, I might have to leave. I’m disappointed that I might not be around for graduations and weddings and grandbabies. But mostly I’m disappointed that my story could have a really lousy ending, and that instead of this person who did really cool things, I’ll be just another person who died too soon.”

So that’s the focus of my pre-scan contemplation of death ritual these days. If I get bad news, am I going to be disappointed? Or will I be able to look my mortality in the face and say, “Ok, it stinks that I’m leaving this joint early, but I can say with absolute certainty that I’ve had a pretty solid run here.” If I can’t answer like the latter, then my performance review tells me I’ve got some work to do.

I share this with you in case you’d like to join me in this fun little exercise (“Oh Jen, you have such a morbid idea of fun, count me in!”). You can skip the bad elevator music and getting stuffed in an MRI tube, but the personal performance review isn’t a bad way to check in with yourself, I’ve found.

For my part, among other things, I’m going to work on writing more regularly. Because I have a better story than “she had cancer.”

The Underwear Always Wins

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I know it looks like I forgot I had a blog. Or decided I didn’t feel like doing it anymore. Maybe I simply couldn’t find the time to blog because I was busy doing AMAZING THINGS. You know, traveling the globe. Writing a novel. Ending world hunger. Becoming an expert at…something. Yeah, as much as I would love to regale you with tales of my exotic exploits, the simple truth is that I haven’t written because I got completely swallowed up by my life. Don’t get me wrong, I’ve done some cool things and had some great experiences this year, but those aren’t the things that have kept me from writing. It’s the underwear. I’ll explain…

I like to call it “Triage” – the immediate needs take precedence over the things that can wait. So in the reality of day-to-day living, that means that if a task doesn’t fall under the category of “This must happen today or I don’t know what will happen but it’s bad,” then it tends to get pushed behind the things that do. Sometimes I’m aware that I’m doing this, but most of the time it just kind of happens. And then suddenly it’s been months since I said I would do this Very Important But Not Important On a Daily Basis thing. I felt a little better about this phenomenon after running into a friend at Target (triage – we needed toilet paper in a rather desperate way. I won’t elaborate). She’s a brilliant writer, and is currently pursuing her master’s in it, and yet she was having the same struggle: “You sit there and think, ‘I could get another chapter of my book written…or I could finish the laundry so everyone has clean underwear tomorrow.’ And the underwear always wins.”

Anyone else feel like that could be their bumper sticker?

“The underwear always wins…”

And here’s the kicker: I’m someone who is supposed to know better. I have cancer, for crying out loud, that was supposed to be my wake up call. The life-is-short-so-do-all-the-things-now epiphany. And initially I did exactly that. I didn’t make a bucket list per se, but I didn’t have to. One stunning diagnosis and I instantly had my priorities in order, along with the motivation to “make every day count.” But as the days stretched on into months and then years, a tentative confidence began to grow, and it whispered, “You know, you might live, did you ever think of that? You have decent odds of beating this thing.” Yeah…better wash the underwear.

But next week I will make my pilgrimage to the Mayo Clinic for my 9 month check. Next week it gets real again. It always does when I go there. Scans, blood work, billions of pictures of my eye (I don’t think I’m exaggerating, it really is excessive), and then the wait. Sitting in the ugliest waiting room (again, probably not an exaggeration), with my headphones in to drown out the depressing music (see also: my previous rants about Nadia’s Theme), as I wait to see my oncologist and hear my results. My palms sweat more than hands should, and I get this weird feeling in my stomach that kind of feels like falling. My heart lurches every time a nurse comes out to call for a patient. And in those moments, the confident voice that has been whispering for the last 9 months is silent. Because what if I come in to this too cocky? No, there is a necessary fear and trembling with which I approach these days. Just in case.

Scanxiety.

I wish I had thought of that word, because it’s brilliant. It is exactly what it sounds like – although, for me it only applies to the actual day at Mayo. The two weeks or so before my appointments, I’m not so much anxious as I am freaking neurotic. But “MRI’m losing-my-mind” doesn’t have the same ring to it, so we’ll stick with scanxiety. My poor family. I am not fun to be around in the weeks before a Mayo visit. I know it, but I’m powerless to stop it. I actually was so distracted with some big events at the end of May and into June that I didn’t realize we were entering That Time. It finally dawned on me, sort of like for us ladies when we realize it’s a certain time of the month and go, “Ohhhhh, so THAT’S why I hate everyone right now.” My family knew all along, by the way.

So I’m looking forward to getting my Mayo day – and the ugly weeks before it – over with. And not. Because while fear-induced neurosis definitely isn’t healthy, neither is being so confident you have a million tomorrows that you neglect your today’s. It’s good to be a little scared. But not too scared.

The underwear can wait. Maybe that’s my new bumper sticker.

We all have things we want to do, things that get pushed aside because life happens. Because triage. But let’s pick one thing that we don’t want to get triage’d out of our days, and then fight for it. Mine is writing more. I’ve always been someone who works better with a deadline, but I don’t want to wait for a dire scan result to give me the ultimate deadline.

I promise to be timely with my next post, and I have high hopes that it will include a positive report from my Mayo day. I know I haven’t been great about health updates recently, but quite frankly, it’s my least favorite thing to write about. That said, I did realize that I neglected to share with you the biggest news of my last Mayo visit: my oncologist looks like Einstein now. Totally true. His hair has gone white and he let it grow out; that, plus the mustache and it’s full-on Einstein. I’m sorry I missed telling you that, because it was awesome. I will try to be better about communicating these important things in the future, I promise. In the meantime, since I’ve finished this, there is the matter of some laundry…

Happy Friday, everyone. Go carpe that diem!

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

Scans Tuesday

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

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

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

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

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

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

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

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

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

Thank you all for your love, support and grace,

The crazy lady
(leaving Wednesday!)

The 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…