Merry belated Christmas!

Merry Christmas, one day late!

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

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

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

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

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

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

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

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

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

Sunday, December 22

imageThis is still Rich taking dictation…

“The good news is that I have felt a ton better the last two days. The bad news is that it’s made me totally antsy. Luckily, I’ve had visitors and Rich to keep me entertained and from going totally nuts. The walks haven’t turned out to be quite as much of a time waster as I had anticipated because 1) I can’t go by myself so I have to wait for someone to walk me and 2) I have to focus on the floor about one foot in front of my feet while I walk. I’m told that St. Mary’s is very lovely but, frankly, their floors are boring. My nurses are fantastic and my party room has enabled me to meet far more people than would otherwise be coming into my room. Seriously, there is a woman from housekeeping and another woman from room service that I will truly miss.

Today our friends David and Elena visited and surprised us with a French picnic, complete with tablecloth and wine glasses. The food was a delicious treat but more than that, hanging out with them was a little glimpse of normal (and this is the only time you will ever hear me refer to Rich and David as normal when they’re together). Watching Rich laughing with David, I realized that I haven’t seen him laugh that hard since before my diagnosis. It made my heart happy. Oh, and thanks to them, I now have a disco ball hanging in my room. How many people can say that?

So, tomorrow will be an early morning as they’ll come get me for surgery at about 6:30. The surgery should happen between 8:00 and 8:30 and is expected to go quickly. Once I’m out of recovery they’ll bring me back to my room, and when everyone is convinced that I’m fully recovered, I’ll be allowed to leave. I was pleased to learn today from the doctor that as a favor to me, he plans to wait to remove my bandages until after I’m under the anesthesia. This is welcome news because having several layers of skin ripped from my cheeks every day when the bandages get changed has been one of my least favorite things. But I expect that when the swelling and redness goes down, the left side of my face with have the youthful glow of someone who’s had a chemical peel. So I’ve got that going for me…

We’ll probably post something tomorrow night to let everyone know that the surgery went well and I’m home but I expect it will be short. I’ll be spending time with my family… 😊”

“I’m hot”

imageHi everyone – this is Rich again. I’m still doing the typing…

“The ‘I’m Hot’ in the title is a reference to the t-shirt that Rich got me that I wore today. Everyone on my floor thinks it’s funny, but we discovered when walking around the rest of the hospital that most people just give me a wide berth – especially in elevators. But the big news today is that I’m feeling a lot better! I showered and a nurse washed my hair and I’m about to take my second walk of the day. I’m also getting much more accustomed to life as a muppet, which is just a more comfortable way to be when you have a bottle cap attached to your eye. My room continues to be the “party room” according to one nurse who stopped by to look at the lights and have some candy. And speaking of stopping by, Dr Pulido came by again this evening to check on me. I’ve said it before but he really does give the impression when you are with him that you are his only patient. He pulled up a chair, got comfortable and didn’t leave until all of our questions were answered. He’s a good guy and I’m very grateful.

I’m really missing my kids. Tessa had set up FaceTime for me on my iPad and phone but it’s really hard on my eyes, and the wifi here is lousy, so we’re just sticking to phone calls right now. My parents are taking great care of them so Rich can be here with me. Looking forward to some visitors tomorrow and still enjoying all of the messages and texts that Rich has been reading me.

It’s Friday night but apparently there are “rules” here about alcohol consumption – so someone, please, have an adult beverage for me! Happy Friday to all and to all a good night…”

Thursday, December 19

Hey this is Rich – Jen is still unable to type or read, so she’s going to dictate this post to me. She says it’s also my job to wake her up if she dozes off between sentences.

“First let me say, this has not gone at all like I had expected. I sincerely believed that aside from some minor discomfort, this was going to essentially be a five day Mayo vacation. Turns out, this has not been fun. As Rich told you on Facebook, last night was rough. Once the local anesthetic wore off, I was in a world of hurt and the only thing that made it even a little better was lying on my back as still as possible and not moving a muscle. We seemed to get ahead of the pain today though, and things got much better this afternoon. Even so, I’ve spent most of the day with my eyes closed. I’m slowly mastering the art of the “muppet head turn” – where I move my head instead of my eyes. What we hadn’t thought of previously is that when you move your good eye, you also move your bad eye, and the bad eye currently feels like there is industrial strength grit in it. So, no eye movement – which totally shoots to the moon all of the reading I brought with me to pass the time. Seriously, I was going to get things done: thank you notes, script writing, all the magazines I haven’t read in the last two months… yeah, not going to happen.

We’ve had some fun here too. Therapy dogs came caroling last night – okay, the dogs visited while their handlers sang but it was nice to have a dog sit at my feet, just like Harper and Wink would be doing if I were at home. And Rich put up Christmas lights in my room and set up a basket of chocolates for the nurses and doctors, so my room is becoming a pretty popular place. And my “damn it doll” from my dear friend Christy has already been on a tour of the unit and was almost kidnapped by one of the nurses – I will have to post a picture for you all. It’s very cute! My Mom and Dad came to visit today. Mom put up all of my “Get Well” cards on the wall. I can’t see very well but I’m told my room looks fantastic. My Dad took a picture of me today wearing a Santa hat but it wasn’t until I looked at it that I learned that the tape holding my eye patch in place is also holding down the left corner of my mouth. So apparently, every time I thought I was smiling at people today, I was actually doing this really weird smirk. My Mom said it’s reminiscent of Sheldon Cooper (Bazinga!).

For anyone who’s planning on visiting, please, please check in with me before you leave. I’m hoping to be more awake in the coming days but if not, it’s a long drive just to watch me sleep.

Thank you so much for all of the support. Rich has been reading me all of the texts, emails and FB messages and they lift my spirits.”

Good News!

Written by Sara Peterson
I am happy to report that Jen is out of surgery, in her room, and looking like “half a bug?” (that from Rich)! She went into surgery a little early at 1:16 pm. The surgeon told Rich that everything went perfectly! She is in some pain right now, but the nurses say that today will be the worst for pain. She is in Francis 6C, room 111 and apparently her room already has a reputation! Rich has decorated with Christmas lights and has a giant basket of truffles for the nurses… Jen will likely be sleepy and not remember much from this afternoon or evening, but I’m sure that she will be posting tomorrow morning! As you all know, she’s pretty amazing:)


Twas the night before surgery…

Well there are some really stressful things about being busy, and some really helpful things about being busy. And things have been crazy busy here. Preparing to check out of life for 5 days is challenging enough, but if those 5 days fall right before Christmas… yeah, I’ve been in hyperdrive the last couple of days. And I’m not sure that’s been a bad thing, to be honest. It means I just haven’t had the luxury of sitting around worrying.

I’m also pretty pumped to do this thing. Don’t get me wrong – the procedure creeps me out tremendously, and I am not excited about being hospitalized with a radioactive bottle cap implanted behind my eye for 5 days – but it’s the first step in fighting this thing. And it feels good to fight. After two weeks of thinking, worrying and waiting, we are finally doing.

I was told my surgery would be at 2:00 tomorrow, but I just got word from Mayo that I have to report for duty at 8:30. That seems ridiculously early, so I’m hoping that means my surgery is earlier. I can’t eat or drink anything after midnight tonight, so an earlier surgery time would be nice. Which also leads me to warn you: if you get any desperate calls or texts from me tomorrow begging you to bring me food or a water bottle or anything – DON’T DO IT. Tough love, friends. You can do it.

So what’s the deal with the embargo on food and even water? Well, this may fall under the heading of “TMI” but I have a wee little problem with anesthesia – I barf. Which is only a mere inconvenience (and sometimes a mess) with other surgeries, but apparently when you have stitches in your eye, throwing up is very bad. So no food, no water, no anything after midnight tonight, and in addition they assured me that they will be including “the 3 best anti-nausea meds we have” in my IV cocktail during surgery. So as silly as it sounds, prayers for no yakking would be appreciated. We need this surgery to work.

I’ve had a lot of questions about visitors. Yes, I’m happy to have visitors, and visiting hours are 8am to 8:30pm. I’ll be at St. Mary’s hospital in Rochester. A couple things you should know, however:
1. Rochester is almost an hour and a half from the Twin Cities. I don’t expect anyone to make the drive – I mean, that’s a long day. You can always come visit me when I get home.
2. If the weather is bad, 52 is not a road you want to be on, so please be safe and stay home. I like you all better alive.
3. I mentioned this before but will repeat: no visitors under 18 or pregnant women. I will not be responsible for glowing children.
4. I was told that if I want to wash my hair it will have to be done “beauty parlor style” in the bathroom sink. Therefore, if you do visit, don’t be surprised if I ask you to wash my hair. No, I’m not kidding (but you are allowed to say no).
5. And this is probably the biggest one: if you plan to visit, please text, call or email me to let me know when you’ll be there. I intend to take as many walks as I’m allowed and able, and it would stink if you made the drive all the way to Rochester only to be told that I’m “somewhere in the hospital”. So let me know and I’ll make sure I’m in my room (and I’ll have my shampoo ready…)

So, hopefully the next time you hear from me I’ll be in the process of radiating this tumor to oblivion (I told my radiation oncologist he has my permission to use extra, just for good measure). Am I nervous about tomorrow? Not yet, but I haven’t really paused to think about it. I’m sure I will tonight. Nighttime is when all the distractions leave and I’m left with only my thoughts and worries and what if’s. But tomorrow the battle starts. Please pray for my warriors: Dr. Pulido, Dr. Holm, Dr. Chen and the rest of my army in the OR. And please pray for Rich and the kids.

Speaking of prayer, I am simply in awe of all the prayer support we’ve received. We are so humbled and grateful. And all the calls, emails, texts, cards, flowers, goodies, meals, hugs… thank you for reminding us in ways big and small that we are not alone in this.

Until tomorrow’s “glowing” report…