Big Things

“Well we pretty much ate Oahu.”

My son’s observation as we were leaving Hawaii Sunday night isn’t much of an exaggeration. We really did sample everything we could (except Spam. Because that’s just wrong. And it’s made here anyway), and while we’re all coming home a little heavier, our spirits are most definitely lighter. It was just so exquisitely beautiful there, and so relaxing to simply be together as we enjoyed everything. And I can honestly say that I didn’t have any sleepless nights worrying about my upcoming scans. Seriously. I think we need to go to Hawaii before all my Mayo trips from now on.

Speaking of which, I’m at Mayo now. Did my blood work today, then we start bright and early with the MRI and chest X-ray tomorrow morning, followed by all the eye exams, pictures and ultrasound in the afternoon. And finally, the moment of truth with the oncologist at the end of the day. If all goes well we’ll be home in the early evening, and I will be posting very good news here sometime tomorrow night. I have rehearsal for our church’s Easter services as soon as I get back, so don’t worry if you don’t hear from me right away. And it’ll probably be brief – something along the lines of, “My eyes are still blurry, but my scans are clear! Having a celebratory martini!” Or something like that.

In the meantime, I thought I’d share one of my observations from my last Mayo day back in September. I never wrote it down, but I found myself thinking about it at length on the plane ride back from Hawaii. And I wonder whose stories I will cross paths with tomorrow.

Everywhere I go at Mayo, I’m surrounded by people going through Big Things. Most of the time I can only study their faces and body language and wonder what their story is, but on a few rare occasions I’ll learn a little about what they’re going through. The couple with the newborn baby that we met in line at the coffee shop, smiling and almost giddy, hardly able to even believe what they were telling us: that she had received a liver transplant only a year or so before, and then got pregnant and gave birth to a healthy baby. I imagine that after so many desperate, awful visits to Mayo before her transplant, this routine check up felt downright triumphant. We ooh’d and ahh’d over their sweet baby, and allowed ourselves to share in their joy. Because for the most part, we don’t see a lot of joy at Mayo. We haven’t seen a lot of outright grief or despair either. Mostly it’s just variations on grim expressions, set jaws and contained emotions. And nervousness. Lots of that. And as I said, most of the time I can only wonder what brings them here, but I know that most likely it is a Big Thing. As I was waiting for my MRI last time, I found myself sitting with another woman about my age. It was the secondary waiting area, so we were prepped and in our gowns. I noticed that, like me, she was nervously fidgeting while trying very hard to not look at her IV, and when she cracked a joke after one of the nurses left, I knew I’d found a buddy. We began to exchange humorous comments about this and that, laughing nervously together. She told me they were running about a half hour behind, so we came up with ideas for activities all of us could do while we waited – a hospital gown fashion show, a dance off – we thought we were hilarious. We never asked each other why we were having MRI’s, but it was understood that keeping the mood light was a good thing. The others in the waiting room, if they didn’t find us hysterical, at least tolerated us. We were probably a good distraction. And then a woman entered with what looked like her mom, which was odd because no one else had their significant person with them. The woman looked like she was in her late twenties or early thirties, and she went over to a chair and just stood there and stared at it. Her mom sat down in the chair next to it. “Come on, sit down, it won’t be that long” she beckoned to her daughter. “Actually, they’re running about a half hour behind,” my comedic partner piped up, “But it’s ok, we’ve found some fun things to do.” Much to our disappointment, neither the woman nor her mother seemed excited or amused by the offer. In fact, the woman got extremely agitated and began to pace. “I can’t do that. I can’t!” She repeated as she paced. I scowled. Well she was no fun at all. And why couldn’t she wait? What, did she think she was better than all of us? Please. We all had to wait, suck it up. She turned tearfully to her mom, “I can’t wait,” she said again. “You have to wait,” the mom calmly responded. The woman paced a few more times, then announced “I’m going to the bathroom,” and marched out. “It’s just around the corner,” the mom called sternly after her, “don’t go any farther than that.” Silence. “Flight risk?” my buddy quipped. The mom wearily turned to us and explained that two years ago doctors had told her daughter that they had done all they could do and that she should go home and enjoy her children. She had already lasted longer than anyone expected, but still… she was young… and her kids were young. This MRI was most likely going to tell them that the end was coming soon. We sat in stunned silence as we listened. No wonder she couldn’t wait. My comedic partner bowed her head and whispered exactly what I was thinking, “I wish I could give her my spot so she wouldn’t have to wait.”

Everyone at Mayo has a story. And really, when you think about it, everyone everywhere else has a story too. The woman in Target, the guy at the car wash, the kid at the mall – maybe they’re not all facing a terminal illness, but any one of them could be dealing with a Big Thing. I wonder how quick I am to judge sometimes, just like I did in that MRI waiting room, and I wonder how things would be different if we all judged slower and loved quicker.

And really, with the exception of picking up hitchhikers holding chainsaws, you can’t go wrong by being nice.

Looking forward to sharing good news with you all tomorrow night. Thanks so much for all the love and support you continue to shower upon my family and me. Your prayers, positive vibes and messages sustain us and lift us up in ways we can’t fully express. We are blessed, and we are grateful.

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!