Thursday, December 19

/ Jen / Leave a comment

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!

/ Jen / Leave a comment

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…

/ Jen / Leave a comment

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

/ Jen / Leave a comment

Ok this is going to be a long sucker, so go get a snack or something to eat while you read. Or, just skip all the paragraphs where I describe my panic attacks and profuse sweating and go to the end where I talk about actual stuff. Seriously, it’s ok. I won’t be hurt.

So here’s the scoop from yesterday that I was just too fried to type out (thanks for your patience, by the way!)…

The day started ridiculously early (Rich actually walked the dogs at 4:30) because my first appointment was at 6:50. Chest CT, piece of cake (and they didn’t have to inject that contrast dye that makes you feel like you peed yourself. Nice). Had a small break after so we grabbed coffee and breakfast. I don’t even know why I wasted the money on the oatmeal. I mean seriously? Too nervous to eat. But we got out our iPads and did some Christmas shopping to distract ourselves. Then up to opthamology for another 5 billion pictures of my eyes. The second I got there, my nervousness turned to full-on panic. I mean this was it – after all of our waiting, we had just some pictures and an ultrasound standing between us and the oncologist and…answers. And to make it worse, it lasted f-o-r-e-v-e-r. Everything took longer than we thought, and then just when we thought we were set to finally meet him, we were told that he wanted more pictures. More pictures?? Why? Hadn’t my eye already been thoroughly documented at this point? Nope, we did a set of infrared pictures. By the way, all of these pictures basically involve getting dilated and then being told to look in a direction that is so severe it feels like you’re going to pull an eye muscle, while a blinding light is aimed directly at your defenseless, dilated pupil. And you can’t blink. Oh, and the ultrasound was kind of creepy – the guy actually put the thing on my eyeball, along with all that goopy gel they use for ultrasounds. He put a bazillion numbing drops in first so I couldn’t feel it touching my eye, but I could feel how hard he was pushing. By the time we got home last night the drops had worn off and I felt like I’d been punched in the eye. But I digress…

We were finally called into an exam room to meet the doctor. And then I remembered: he’s a Big Shot, and Big Shots always have fellows training under them, and the fellows always go first. So instead of getting answers, we did what by now we’ve gotten very used to doing – we sat with racing hearts and sweaty palms and studied the guy’s face for any kind of reaction as he read my records and charts. He then did the longest eye exam I’ve had in my life, while I said scripture in my head and tried to breathe. He even left to get colored pencils so he could draw a picture of my eye. For real. It’s the Mayo Clinic, and I have just had zillions of pictures taken of my eye, using every kind of state of the art machinery, and he’s drawing a picture. It would have been amusing if we weren’t totally dying inside. But then as he was finishing and putting all the papers back into my folder, he glanced at one and remarked casually, “I see you already had your CT’s and MRI. Nice to have those done and looking good.” And before we could really make sense of it, he was gone. “He said they look good!” Rich whispered as the door closed. I just nodded. I wasn’t sure – good, like good quality, or like the news we had been waiting a week to hear?

They moved us to the room next door, which looked exactly the same as the room we were in. I have no idea why, except maybe they noticed the puddle of sweat on the exam chair and decided I needed a dry one. At any rate, Dr. Pulido finally entered the room, a jaunty looking man with funky glasses, a Christmas tie and bright blue and red dress socks. For the entire time he was with us, we had the feeling that he had nowhere else to be that day, that he was prepared to talk to us for as long as we needed. He told us what he knew, what he thought about various things, and answered every one of our questions. An incredibly kind man, with a sweet smile and a gentle way about him. Don’t get me wrong – he made it clear the second he stepped into the room that this was very serious. It wasn’t a happy appointment by any stretch of the imagination, but we immediately felt like we were in good hands. He put us at ease with the CT and MRI results quickly. Apparently I have multiple pulmonary nodules. He turned to me and looked me in the eye. “People get those. Don’t worry about it.” Ok. Next, there was a cyst on my liver. “People get those too. Don’t worry about that.” Ok, this is good. This is very good. And then the bad news: we can’t do the biopsy. If you really want the nitty gritty on that let me know and I’ll discuss it in a future post, but suffice it say, we are not going to be able to find out if I have class 1 or class 2. Very disappointing, to say the least. But, he also said that he doesn’t treat patients with class 1 and 2 any differently. We all get the same monitoring. The other thing he said that was reassuring was that they are making great strides in treating metastic ocular melanoma. He listed off a slew of drugs that have just recently been approved for use. And while there currently isn’t any prophylactic pill that they can give to class 2 patients, they’re getting really good at slowing the progression down. He told me that I am in better shape getting this now than even 3 years ago, that’s how fast things are improving. So basically, if I do have class 2, it’s possible that it won’t metastasize for a bunch of years, and by then who knows what treatments they’ll have in their arsenal.

And speaking of spread, the tumor is doing exactly that (there has been “retinal invasion”), so we have to move fast. That’s apparently why I jumped to the front of the surgery line – the sooner we get that plaque in, the better. And it takes a minimum of 7 days to make a plaque, so by doing the surgery next Wednesday we’re treating it as soon as possible.

Then we talked about my vision. Which was odd, because we just haven’t thought about that much. I mean, since this whole thing started we’ve been focused on saving my life, not what it was going to do to my eyesight. But Dr. Pulido handed me a prescription. “It’s for glasses with polycarbonate lenses. You need to get them now.” he said, and then explained: I’m going to have significant vision loss in my affected eye (from the radiation), so suddenly my other eye becomes very precious. As such, I will have to wear glasses every waking hour to protect it, and wear safety goggles any time I do yard work. The interesting thing is, the radiation will take a pretty long time to destroy my eyesight. It won’t happen immediately, just gradually over a period of 1 1/2 – 2 years. So my girlfriend Jeannine came with me today to pick out a sassy pair of specs. I don’t wear glasses so it’s going to take some getting used to, but it’s fine.

So the plan is to be in the hospital – St. Mary’s in Rochester (run by Mayo) – from Dec 18-23. After I’m released, I’ll only have to wear an eye patch at night (to protect me from poking myself). I won’t be allowed to exercise for a month (this is going to be very hard, I can already tell you that) so as not to put any strain on the eye. My eye will look “mealy” for a while and I will probably have double vision for a few weeks. I’ll also have a droopy eyelid, and this may or may not get better. If it’s still drooping in March, I’ll need to get a lid lift if it’s bugging me. I’ll go back a month after my surgery to see how the stitches are dissolving, and see if the tumor is shrinking. 3 months after that I’ll have more scans, but just of my liver. And if everything is looking cool, I’ll go onto a maintenance schedule of scans every 3-6 months.

So I think that’s the scoop on our day yesterday. I’m sure I’ve forgotten something, but this post is already way too long, so I’m going to have to cut it. I’ll talk about more stuff in future posts. They’re mostly f words (no, not that f word): faith, fear, friends, family and the future come to mind. I’ve got some stories about the incredible support we’ve received that I can’t wait to share with you. But I’m still pretty disorganized in my head, and I know I’m missing things here and there, so if you have any questions or think of anything you’d like me to cover here, just let me know.

Bet you finished your snack by now, so I’ll stop yapping. Until the next post…

Results!

/ Jen / Leave a comment

Looooooooong day at Mayo today, but we finally got the answer we had been waiting most for: the cancer hasn’t spread! I feel like now that I know where the starting line is, I can run the race.

And I will be more than glad to tell you exactly what the race is going to involve, and all the details of our day…later. Today started at 4 am and involved a ton of tests, along with at least 6 good panic attacks, and I am just fried. I’ve had people today ask me, “Aren’t you so happy? So relieved?” Yes and yes, but I’m so emotionally exhausted at this point, I can’t seem to feel my feelings. Or complete a thought.

So thanks for checking in on us, and I promise tomorrow I’ll write a proper journal entry. Right now though, I’m going to bed. I have about a week’s worth of sleep to catch up on 🙂

Tom Petty was right….

/ Jen / Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

On our way to Mayo

/ Jen / Leave a comment

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

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

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

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

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

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

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

Let’s start at the very beginning…

/ Jen / Leave a comment

This was the first post on my Caringbridge site…

 

…ok let’s not. Not yet anyway. This is just a quick entry to assure you that I really will post stuff, probably a lot of stuff. But I can’t quite do it yet. When you are diagnosed with cancer, there are suddenly a lot of things that you need to take care of NOW… as well as a lot of waiting and worrying. Neither lends itself very well to thoughtful journalling, which is what I hope to do here. My dear friend Sara told me tonight that she’d help with this, so you can expect to hear from her sometimes. She writes really well, you’ll enjoy it.

So thanks again for stopping by. I swear there will be some actual information here soon. In the meantime, please keep my family in your prayers.

Thanks,
Jen