Grace > karma

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How not to run a blog: apologize for taking so long to post and then assure your readers that you will try to write more often…and then take longer than ever to write another post. Yep, I’m not going to be winning any blogger of the year awards any time soon. Totally fine by me, but my sincere apologies to anyone who was wondering what happened to me.

What happened to me? Well, there’s the picture at the top of the post, for starters. That happened. Graduation. An absolutely wonderful, crazy whirlwind of a week, but I think I did a decent job of making good on my intention to savor every bit of it. So many people I love, coming together to celebrate and love on my kid…I still sigh audibly when I think of it.

Physically, my rheumatoid arthritis was crappy during all of it, so that was a bummer, but I was too busy to take much notice. And I knew I could take the prednisone that I keep handy for flares, but that stuff, while amazingly effective, does make me a wee bit crabby. Ok, a lot crabby. And this was just not the best time for Crabby Jen to be appearing in public. So I pushed through it and things were fine. Once the dust settled, so did my symptoms, so I didn’t have to hit the dreaded ‘roids after all. And my family breathed an enormous, collective sigh of relief. Cause it’s not a ton of fun when Crabby Jen is running the joint.

I have a rheumatologist appointment in August, and we’ll certainly be chatting about my meds then. I’m still not loving the ones I’m on, mostly because they don’t seem to be working as well as the previous ones, but also because they might be causing some side effects that I’m not crazy about. We’ll see what the rheumy has to say about it, and then – oh joy! – we might get to enter into the delicate diplomacy of trying to get the rheumy and the oncologist to agree on a new drug. Just in case I get bored having a kid off at college and need a hobby to fill my time.

I also had my six month post hip surgery blood work and – drum roll please – I am no longer excessively metallic! In fact, I’m barely metallic at all, which is supremely awesome. So it’s safe for everyone to have magnets around me again. What a relief for you all, I know. And speaking of my hip, I am apparently recovering so well that my surgeon didn’t even want to see me for my six month follow up. His assistant called and asked if I was cool with waiting till the one year mark to see him. Now I like my surgeon and all, but I am just fine with sitting in one less waiting room, thank you very much. In the meantime, they have me going to physical therapy, just to try to get back to 100%. I had hit a plateau at about 80%, so I’m very close, but it will apparently take a little more work to get all the way back. Bring it, I say.

And for the final ring of my three-ring health circus: my eye. I have now had three Avastin injections, and as I said in a previous post, I expect they will be bestowing pro status upon me any day. Really, I can rock those things. Ok, ok, they’re just not as big of a deal as they sound, but don’t tell anyone. I like that people think I’m tough. But the truth is, my blind spot totally works in my favor, because I can’t see the needles coming at me. So I’m grateful that worked out. I’ve got a lot more of these coming, as there is still bleeding around the tumor, but they’re starting to space them out more now. Once again, I say bring it.

So at this point you’re probably wondering what’s up with the title of this post, because so far I’ve just given you a rundown on my health status. It actually has to do with something that happened back in May, when Rich and I were traveling to St. Thomas, but I’ve been thinking about it a lot lately due to the road construction going on around our neighborhood. (Say what? No seriously, go with me here, it connects. I promise…)

There is a major intersection near our house that has been closed since May so they can convert it into a two-lane roundabout. Consequently, traffic has been diverted to surrounding streets (including ours), none of which were designed to handle the volume and speeds of the roads that are currently closed. I probably don’t have to tell you that this is not exactly bringing out the nice in anyone. And we who live here and drive on these streets every day get a front-row seat to witness all the anger, impatience and general ill-will of all the folks who now have to take a much longer route, with much longer waits, to get to their destination. It’s discouraging, to be honest, to see people acting like total jerks to one another, but you know what? It also makes me mad. And then I want to act like a jerk too. Because they deserve it.

And then there’s Facebook. Holy crap, can people get their nasty on when they’re at a keyboard. Just the other day, I saw that a friend had shared a post about a sensitive topic. It was a compelling message, stated with great thought and some solid logic. And it opened up a good opportunity for some thoughtful dialogue about the subject. But then I read the responses. The amount of emotion and venom contained in them was matched only by the extreme quantity of judgment and righteous indignation. Gone was any logical argument or respectful dialogue, replaced instead by LOTS OF SCREECHING IN ALL CAPS, because apparently that shows that you REALLY MEAN IT and that the other person IS SO INCREDIBLY WRONG. They all had to get their jabs in, and I’m sure they felt their hurtful words were justified because he had posted something so stupid and so offensive to them. He deserved it.

Which brings me to something I observed on our trip this past May. As our flight was about to depart, we noticed that while we were crammed together in a very full row, the row ahead of us only had one person, sitting on the window. “I’ll just jump up and sit in that aisle seat,” Rich offered. “That way maybe we can stretch out and grab some sleep on the flight.” Sounded reasonable enough, but as soon as he stood to move ahead, the guy sitting in the window seat of that row immediately slung his big, hairy, flip-flopped foot across the middle seat and onto the aisle seat, glaring at Rich over the top of his sunglasses (yes, sunglasses. Inside. On a plane). Wow, what a jerk, I thought. Rich returned to his seat next to me and sat down. “Sorry, I don’t think I’m moving,” he whispered. “It’s fine,” I grumbled back, “you probably don’t want to be near him anyway.” Just then, the captain came on the intercom and announced that they would be holding our departure to allow for some passengers coming in on a late connection. The guy in front of us exhaled loudly in disgust. I turned to Rich, “Wouldn’t it be awesome if they end up sitting right next to him?” Rich nodded. We settled in to wait for the additional passengers, the time punctuated by a few irritated groans from the guy in the row ahead of us. Finally, we heard breathless voices as the remaining passengers arrived and began to hurriedly make their way down the aisle to find their seats. An older woman stopped at the row ahead of us and squinted at the numbers above before yelling triumphantly over her shoulder, “THIS IS IT, HONEY! THIS IS OUR ROW!” As her adult son joined her, she threw multiple bags onto the floor and squeezed into the seat next to Grumpy Sunglasses Guy. I turned to Rich, unable to contain my glee, “This is fantastic!” “I hope she’s chatty,” Rich added, watching as the woman and her son (and all their bags) settled in ahead of us. Still out of breath, she turned with a grateful smile to Grumpy Sunglasses Guy, “Thank you for waiting for us!” He snorted. “It wasn’t my choice, believe me,” he shot back, sighing loudly before turning toward the window. She was not easily deterred, however, and continued chatting happily at his back, filling him in on all the details of their travel, seemingly oblivious to his disinterest. Rich and I just sat and observed, savoring the sweet schadenfreude of seeing someone get what they deserve. The lady continued to ramble on as Grumpy Sunglasses Guy writhed uncomfortably, and I thought with great satisfaction, this can’t get any better. After enjoying it all for a while, I sighed contentedly and got out my headphones and my book, settling in for the flight. All was right with the universe. About an hour later, I glanced up from my reading and saw to my great pleasure that she was still talking. Ha! Love it. But wait, it looked almost like – he was actually listening. And his body language was all different. He appeared relaxed and kind of…pleasant. Wait, what? I took out my headphones and sure enough, they were having a conversation. I couldn’t hear what they were saying, but his head was angled in towards her as he listened intently, and I could hear that he was talking too. Weird. I went back to my book. Finally we began our descent, so I took out my headphones and started to put them away. The in-flight movie was just finishing up – McFarland, USA – one of those feel-good, based-on-a-true-story sports movies. It was the final scene, where the team runs in the state championship race. Rich, who had been watching the movie, shifted his gaze for a moment and then looked at me. He pointed to the guy ahead of us, “He’s crying,” he whispered incredulously. I glanced over, and true enough, he was wiping his eyes. Wow. We were on the ground a half hour later, and as we stood to get our bags from the overhead compartment, I looked over at the row ahead of us. The guy had his sunglasses perched on the top of his head and was reclining against the window, laughing with the lady. Like he wasn’t in any hurry at all, completely at ease and content to sit and chat with his new best friend. And I was stunned. At the beginning of the flight I thought things couldn’t get any better because come on, what’s better than karma? What’s better than seeing a total jerk get what he deserves? I now found myself looking at it.

Grace. Grace is better.

Because I have been that jerk. We all have. And thank goodness we don’t always get what we deserve. Thank goodness.

So I’ve been thinking about that a lot lately, as tempers flare on the roads, on social media and in every other place where I’m tempted to think that it would just be so awesome if people got what’s coming to them. When I feel completely justified in letting anger make me the worst version of myself because, “That’ll teach ’em.” It’ll teach them – what?

We can’t really make karma happen anyway, it’s pretty much beyond our control. But we can be instruments of grace. We can resist the urge to return hurt with hurt, condemnation with condemnation, venom with venom. It’s not always easy – oh, how I wish it was! – and the rewards are more than we can see sometimes. But sometimes we do get to see it. On a plane, for example.

Grace > karma.

It just is.

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In it, not through it

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Let me begin with an important announcement: I’M FINE! Yes, I know it’s been over a month since my last post, but I assure you it’s only because I got busy with the stuff of life, not because something bad has happened with my health. I absolutely appreciate the concerned queries when I’ve gone an extended amount of time without posting, but I promise you, if anything ever goes wonky health-wise you will be the first to know. Wait, let me correct that. I will FIRST notify my parents and close family. THEN I will tell the world. “I don’t want to hear it on Facebook,” my mom is fond of saying regarding any major news. You won’t, Mom. Promise. And, I hope to never have anything bad to report anyway, so let’s talk about something else.

Ooh, how about something new, like for instance my health? Yeah, even I’m getting tired of all that, so I’ll keep it brief. I had my second eye injection last week and I think I’m already well on my way to achieving pro status at that craziness. Which is good, because the first one didn’t seem to put a dent in the bleeding around the tumor, so this is going to be a monthly thing for the foreseeable future. It’s a pretty slick process: numbing eye drops, then a shot of novocaine, then the Avastin injection and a super attractive eye patch for a few hours. The eye is irritated and a little sore for a bit, but that’s about it. If it didn’t take two hours, I’d be fine with the whole business. Yes, you read that right – two hours. I have no idea why, other than the office is crazy busy. Or they figure all the patients are ninety years old and don’t have anywhere else to be, I’m not sure. At least they didn’t dilate my good eye this time, so I was able to sit in the waiting room and send annoyed texts to friends. Yes, I could have used my time much more productively and positively, but the snarky texts were more fun.

On the rheumatoid arthritis front, things haven’t been going so swell (Ha! I just caught that when I reread this. Bad pun. Sorry, I’ll try to be better…). I’m starting to think that the new drug isn’t working as well as the old one, mostly because when I was on the old drug I frequently forgot that I even have RA. Now I’m not a doctor, but I would say that’s an indication that a drug is working. On the new drug, however, I am in no danger of forgetting that I have RA. It’s nothing terrible or debilitating, but it’s not pleasant either. I only switched meds in mid-April, so it’s probably too soon to officially say that it’s not working (you’re supposed to give RA drugs a good three months to work), but I might have to call my rheumy soon to chat about it. Which stinks, because in the Great Mayo/Edina Treaty of 2015 we were able to find an RA drug that both my oncologist and rheumatologist were cool with. Getting both parties to the table again in the same year would require a huge diplomatic effort. I might need to call in some reinforcements.

Speaking of calling doctors, I do have something to share that may be of some help to any of you who, like me, have ever put their life on hold while waiting to hear back from a doctor. You know how it goes: you call the office and leave a message with their nurse. She/he talks with the doctor and then either the nurse or doctor calls you back…sometime. You know that if you miss their return call, you’ll have to repeat the waiting process, so you resolve to have your phone on your person at all times. You’re ready. You bring that phone with you everywhere. In the car, to the grocery, within reach of the shower when you bathe, in your fitness class (yes, you even risk being one of those people), and yet they never, ever call. Fear not, sweet friends, for I have found the answer. I have discovered exactly what to do to cosmically summon that phone call: color your hair. Yes, it has worked for me enough times now that I can say this with the utmost confidence. Color your hair. Pile a ton of the darkest, goopiest, stickiest dye you can find on your head, smear it generously into your hairline, being careful not to miss the sections around your ears, and a doctor will certainly call. I just had to replace my phone case because it had auburn smears all over it, that’s how well this method works. A small price to pay for returned calls, I would say. So if you want a doctor to call you back, just color your hair. Or, if you like your hair the shade that it is, I bet that any messy project will work. Just make sure that it is super inconvenient to hold a phone while doing the task, and you can expect that call. I colored my hair the other day and not only did two doctors call me, the guy from the car dealership also called to tell me my new floor mats were in. Bonus.

So that’s it for today. I will try not to go more than a month without posting, but no news really is good news. It means life is keeping me busy, which is a lovely thing. Being alive is just great period, I try not to forget that. It’s easy, however, to get caught up in the to-do lists and things that stress me out – and when I do let them overwhelm me, I am not my best self, I will be honest about that. I end up just trying to get to the other side of it, get it over with, instead of relishing the fact that I get to be here for this. For all of this.

This week is totally nuts. My son graduates, I have out of town family visiting and we’re hosting a party. I’m also on the senior poster committee for the all night senior party and coordinating music for a Disabled American Veterans event the day before graduation. Riley has parties to go to, a few last tests, the senior brunch and baccalaureate. Tessa has dance team tryouts and a major group project due for one of her classes. We are not a calm household at the present moment. At times like these, it’s easy to think, “I just want to get through this week.” But then at church yesterday morning I ended up talking to my friend Marilyn and she said something that really grabbed my attention. Marilyn is one of those people that just has a light around her, one of those rare beings that you find yourself wanting to get as close as possible to, as if her goodness is a kind of wet paint and you’re hoping to get some on yourself. Among the challenges she’s faced in her life is a very advanced case of RA, and she inquired as to how mine was doing. I told her a little bit, but then couldn’t help totally fan-girling her: “You are so incredibly strong, Marilyn, and your attitude is just inspiring. How do you do it?” She smiled that beautiful, radiant Marilyn smile. “Well, I ask God every day to give me a heart for my journey, and peace as I make my way.”

I let that sink in a bit.

“Give me a heart for my journey, and peace as I make my way.”

I know that’s meant to apply to life in general, but I couldn’t help hearing it in the context of my upcoming week. I realized that during a pretty important week in our family’s life, I was only seeing the work that needed to be done, and the obstacles, both health and otherwise, that lay in my path. I was just trying to get through the week, get on the other side of it, rather than simply being in the week. Living “in the moment” can be such a clich├ęd phrase that the meaning doesn’t even register anymore, but that’s really what it is. Or needs to be.

I resolved then and there to focus on being in this week, rather than just trying to get through it. Being fully present for everything. Enjoying the company of friends and family, marking a huge milestone in my son’s life and doing it all with gratitude. A heart for my journey. And peace as I make my way.

Deep breath. Here we go…

Cleaning glasses and taking carts

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Well folks, the news on the eye injections is that they are NO BIG DEAL! Can I get a woot woot? As you can see from the picture, I still rewarded myself with a chocolate bar, but it was definitely a case of the anticipation being far worse than the actual event. And yes, I did see that scary anti-smoking commercial (by accident, I assure you), where the woman is sitting in the doctor’s chair with her eyelid held open with some torturous device and a needle coming directly at her, and that is quite honestly what I expected. Thank goodness that wasn’t the reality. But oh, I sure did work myself into a pretty good panic ahead of it, I will tell you that. And it took forever at the retina specialist’s office before we even got to the injection, AND they dilated me in both eyes first, so I had absolutely nothing to do but sit in the waiting room nervously awaiting the procedure, listening to all the other patients around me chatting – and by chatting I mean shouting at the top of their lungs. I am sure I don’t have to tell you at this point that everyone else in the waiting room was a good 30-40 years older than me, because that’s pretty much the drill at all my specialists’ offices. What can I say, I don’t just have an old soul, I apparently have an old body too. After listening to one couple engage in a disturbingly clinical discussion of funeral homes, I heard another lady remark to her daughter that she was getting another injection. “Does it hurt?” I interjected. The woman looked at me quizzically. “DOES IT HURT?” I shouted desperately. She looked at me like I was a total wuss. This frail, 90-something year old woman, who needed a walker and was about half my size. “Well not really,” she responded, still looking at me like she couldn’t tell if I was joking or not, “It’s just a little stick, that’s all.” Seriously. This is how I knew I was being the world’s biggest ninny.

Honestly, the worst part wasn’t even the injection, it was getting dye shot into my hand for the fluorescein angiogram (fancy eye picture that shows blood vessels). The eye injection stuff was legitimately no big deal. They used numbing drops first, and the doctor gently held my eyelid open with his fingers, not that horrible clampy thing from the commercial. He stuck me with a needle of novocaine and then the needle of Avastin, and it was over. And I didn’t feel anything. All that panic for nothing. Which is good, because apparently this is going to be a monthly thing for me until they get the bleeding under control. I had to wear a patch for a few hours and I was sore for the rest of the day, but really – not worth the emotional energy and stomach lining I wasted worrying about it. I find that a lot of things in life are like that, and every time something like this happens I am reminded of something my friend Jami’s mom used to say: “Worry is suffering in advance.” Truth.

Oh, and Riley picked a college! He’s going to be studying engineering at the University of Wisconsin – Madison next year. And no, we didn’t get any signs to help with the decision. Not one. No prophetic dreams either (one of his friends was lucky enough to have one of those, and is going to Madison because of it. “Did you happen to notice if I was there too?” Riley asked him hopefully. No dice). No, sometimes tough decisions demand to be wrestled with, and that was the case here. We are all just relieved that it’s finally over and that we know what color sweatshirts to buy.

I saw something in the paper the other day – one of those heartwarming stories about a person who did this very huge, very generous thing for someone who was down on their luck. It was a great story and an even greater act of kindness. I cried when I read it – but then, I have a senior who is about to graduate, so I cry pretty much daily now. Don’t judge. But this was legitimately tear-worthy. And it got me thinking about all the amazing acts of kindness that I’ve been the fortunate recipient of with all my health “issues” in the last few years. The thing is, the ones that come to mind aren’t always the huge, splashy ones. Actually, it’s some of the smaller ones that touched me the most. For instance, we were over at our friends’ house one night a few months ago. I was tired and crabby for reasons I can’t remember, and I was complaining to one of the other guests that I can’t keep my glasses clean. Yes, that is the minutia that I chose to gripe about – my perpetually smudged glasses. I had to start wearing them after my cancer diagnosis (to protect my good eye), so maybe I associate them with that. Or maybe they’re just a pain to wear, who knows. Anyway, just as I was mid-rant, our friend Stan (who, with his wife Deb was hosting the evening) happened to walk by. He stopped and listened with a furrowed brow, and then held out his hand. “Give them to me, I’ll clean them.” “What?” I stammered, “No, you don’t need to – I mean, I can totally – it’s nothing, really – I’m fine.” As I was protesting, Deb walked by and patted me, “Oh let him clean your glasses! He’s so good at it.” “Yes!” Stan laughed, “I’m the expert! Now give them to me.” So I meekly handed them over and he went to their kitchen desk, produced a special cloth and a bottle of glasses cleaner – I think I have one of those but I’m too lazy to ever use it – and began to meticulously clean my filthy glasses, periodically holding the lenses up to the light to check for errant smudges. I just stood there and watched. It was such a small thing really, but in that small act of kindness I felt heard and cared for, even at my whiniest and least deserving. Grace… It doesn’t just feel good, it has the power to transform.

One other moment that I remember vividly happened in February, a few weeks after my hip replacement. I had made the transition to using only one crutch, and was fully enjoying my newfound mobility, freedom and independence – well, I thought I was independent. At this moment I had just completed my first solo run to Target and was feeling thoroughly triumphant as I exited the store with my cart. Unassisted, ha! I can do this! Now, the thing about having a handicapped tag for your car is that you get to park close to the store entrance, but not necessarily close to the cart return. Did I mention it was snowing? Hard? Yep, and as anyone who doesn’t live in a tropical paradise knows, carts are hard to push in snow. I contemplated this reality as I used my non-crutch arm to unload my bags into the trunk of my car. So much for being capable and independent. Just don’t wipe out, I told myself. As I turned to look for the nearest cart return, a woman approached. “Can I take your cart for you?” She asked with a kind smile. “Oh my gosh, that would be amazing! Really?” I peered at her through the heavily falling snow. “Really,” she laughed, and proceeded to commandeer both her cart and mine and move briskly toward the cart return. “Thank you!” I called after her, suddenly feeling very warm even as the cold snow fell.

It’s impossible to put into words exactly what these small acts of kindness meant to me, or how they encouraged and changed me. And I wonder how many times I’ve missed opportunities to do similar things for others. How often have I been so engrossed in my own personal sphere of “me-ness” that I haven’t noticed people around me who could use a hand? Or an ear? Or a shoulder? It’s so easy to get caught up in the mental to-do list, the “what’s next?” and completely miss what’s happening now. Because what’s happening now could be an opportunity to love on our fellow humans, if we can just poke our heads out of our bubbles long enough to see them. We tend to think of acts of kindness as being BIG things. But there is incredible power in the small acts too. I know because I was and continue to be the recipient of so many beautiful gestures. They inspire me.

Hoping you maybe find yourselves inspired too, and that you grab hold of those opportunities – both big and small – to be kind to others. You may not get thanked or know the full effect of what you did, but I can assure you, it makes a difference.

Signs

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So here’s the rundown on my Mayo trip last week. Sorry it took me so long to post, but the treadmill of life has been whizzing along at a brisk clip, and I had to once again return from Mayo and jump back on right away. No time for quiet contemplation (will that ever happen??). I did get to sing at Easter services and even lead the Call to Celebration – pretty powerful stuff to be talking about resurrection when you’re feeling reborn yourself. And so cool to celebrate with people who have been faithfully, tirelessly praying for me and encouraging me throughout all this.

So back to Mayo… First off, this picture is evidence, I believe, that someone at Mayo has a sense of humor – it’s the sign outside the room where I had my IV put in before my MRI. But then I asked if I was getting a pedicure or neck rub in addition to my IV, and the nurse acted very confused, so obviously not everyone is in on the joke. In fact, he proceeded to get extremely serious about my veins (to be fair, they are unusually slippery suckers), going so far as to use what looked like a stud finder to locate his target. He still had to stick me twice. In the “relax room.”

But I have to say I’m getting better at MRI’s with each one I do, and now I’m not panicky at all. Just a wee bit nervous. As long as I have my magic eye mask, I’m good to go. And music – a lot of MRI places give you headphones so you can listen to music while you’re in the tube, but not Mayo. At least not for their liver MRI’s, probably because you have to listen to directions about when to hold your breath and when to breathe “normally.” Like there’s normal breathing when you’re stuffed in a tube. So a few times back when I told my best friend Karen that I was music-less, she resolved to fix that. Since then, right before every MRI, I receive a text from her containing the lyrics to a song pretty much designed to drive me crazy in the tube. I usually get the text while I’m in the waiting room, and then gasp and burst out laughing, thereby confirming all of the other patients’ suspicions that I’m totally nuts. It does get me a large dose of personal space however, so there’s that. Anyway, I like you all too much to tell you what this last song selection was. Suffice it to say, part of the chorus doesn’t even involve real words, and it took days for me to purge it from my mind (oh and Karen, my family thanks you for that as well, because you know I sang it out loud every time it returned to my brain. They send their love).

Among other things that made me laugh during my time at Mayo (you had no idea scans were so hilarious, did you?) was the introduction of a new species to the ophthalmology waiting room – a child. Yes, a foreign species indeed, as I am usually the youngest patient in the room by a good 20-30 years. It was refreshing and entertaining, to say the least, but no more so than when the lad took out a laser pointer and began playing with it. I had to leave for a moment so I could redo some pictures that the tech in training didn’t get quite right – and the only thing more fun than looking directly into an industrial strength floodlight while a tech tells you not to blink is doing it twice – but when I staggered, half-blind back to the waiting area, I found Rich sitting with his lips firmly pursed together, trying not to laugh. Apparently, the boy continued to play with the laser pointer after I left. As he directed it around the walls, ceiling and floor, it caught the eye of a woman who, after following the dot of light studiously, pointed it out to her husband, who proceeded to also track the mysterious red dot. One by one, anyone who wasn’t too dilated to see it joined the audience, mesmerized by the constantly moving orb, never seeing that the source was the little boy. The end result was a room full of white heads moving in perfect unison as they followed the dot – much like those YouTube videos of cats doing the same. And to think I missed it. Dang.

The levity was appreciated, as the time at the end of the day in the ophthalmology waiting area is always the most fear-filled time. Unlike the earlier parts of the day where we move from building to building for various tests, this period of 3-4 hours involves sitting in a special (and by special I mean ugly) waiting area, and periodically being called for eye tests. Test and wait, test and wait, test and wait… And with each test we count down until the tests are over and we see the doctor for the results. Oh, and when we finally see the doctor it’s not The doctor – it’s one of his fellows. The fellows do a complete eye exam, and pour over charts, pictures and things on the computer screen written in such a small font that even Rich with his non-dilated eyes can’t read it…and they tell us nothing. We are dying inside, and they are looking at all the results that will determine my fate… in total silence. It’s horrible. I sit and shake and sweat, even though my hands are ice cold, and they say nothing. Until this last time. I must admit I found myself initially doubting that this particular fellow was even old enough to be a doctor (wow, am I that old? Doctors are looking young to me?), but this angel walked in, sat down, looked me in the eye and pronounced, “your scans all look good, let’s just get that out of the way.” And she smiled the sweetest smile, adding, “I know that’s what you’re waiting for.” Um, YEAH! Oh, sweet relief! So then she did all the things the fellows usually do, but I didn’t care how long it took, because I knew my results. Ok sure, I didn’t know anything about my eye, but the cancer hadn’t spread, so who cared? Not me. “Text everyone” I mouthed to Rich, and he began to happily tap on his phone while the the doctor completed the exam. Seriously, I can’t begin to describe the relief.

So I wasn’t worried at all and could fully enjoy it when my oncologist sailed into the room, smiling broadly. “You’re doing so well!” He exalted. The only glitch, if you could call it that, is that my tumor is beginning to bleed around the edges – totally normal for a shrinking tumor. Yes, you heard that right folks, the tumor is continuing to shrink! So that’s good. But the bleeding means I have to start Avastin injections so it doesn’t hemorrhage and cause me to lose all the sight in that eye (because I do still have some, and it would be nice to keep what I have). That’s not so great, but it is what it is. Did I mention the injections are given directly into the eyeball? Yes, commence squeamish writhing. I’m sure they’ll numb me up, but it’s the gross out factor that has me concerned. I’ve tried to look up the procedure so I can know what to expect, but I end up awash in heebie jeebies every time, so I’m done researching. Like I’ve said, I’m tough about physical pain, but I’m a total ninny when I’m grossed out.

Overall though, the appointment was going swimmingly, as we all celebrated my clear scans and shrinking tumor. Then I wrecked it. “So, about my RA meds….” I said innocently enough, and that was it. He had indeed received the note from my rheumatologist about going halfsies on the plaquenil (like the oncologist had suggested last time) and adding another drug, with his permission. He had received it, but hadn’t read it apparently, because his assistant had to point it out to him. For whatever reason, he gets angrier about the plaquenil each time we talk about it, and this time he was massively ticked. He started going off about potential retinal toxicity – “and you’ve only got one good eye!” So here I thought he was going to be pleased that the rheumy listened to him and cut my dose in half, and instead he’s on a tirade about why I shouldn’t be on it all. “So what about the sulfasalazine that my rheumatologist is recommending in addition to it? Can we do that?” I asked weakly. “Fine, fine,” he grumbled, “But I hate that plaquenil. You can do 200 mg one day, then 100 mg the next and keep alternating. But I don’t like it.” Ok… “Soooo if you don’t want me on the plaquenil, what else can I take?” I pressed. He threw his hands up in exasperation, “Ask your rheumatologist! That’s his job!” Oh ugh. Seriously, just ugh. I totally understand where each of them is coming from though. Dr. P. wants to keep me alive and save my vision. Dr. W. wants to keep me from ending up disabled. I get it. But it’s tough being in between the two, especially when you don’t have a medical degree. Dr. P. sighed, rubbed his face and wearily sat down, “I just wanted to be happy about your case,” he said softly, “We had good news and I just wanted to be happy.” He’s a good guy, he really is. And when you treat a cancer that kills half the people that get it, I’m sure you have to deal with plenty of bad news. So I didn’t push it any further – and really, there wasn’t anything to push. The whole 200/100 alternating dose thing was going to be a pain, but whatever. I’d talk to my rheumy about it later. For now, there was a triumphant blog post to write and a celebratory martini to enjoy.

I did call my rheumy’s office the next day, and just heard back that we’re ditching the plaquenil all together and trying to go with just sulfasalazine. We’ll see how that all goes. In the meantime, I’m scheduled to start the eye injections on the 22nd. Hopefully I will be reporting back that it was no big deal, and that I’m super excited for my next one.

So that’s the scoop from last week’s scans. I’m off now to make one last college visit with Riley – well two visits actually, just on back to back days, so it’s really just one trip. The poor kid is having a terrible time deciding on a school, to the point that when one of our friends asked him what he’d be looking for this weekend he deadpanned back, “A sign.” He’ll figure it out, I’m not worried, and all the schools are awesome, so he really can’t screw this up. But I have to say, I’m just sorry to see these mother-son trips end. They’ve been such a special time for us together as he prepares to take this huge leap to the next chapter of his life. I’m excited for him, because he is so ready and he’s going to do great, but I’m sad for me. Because I’m going to miss him so much it hurts just thinking about it. A bittersweet time, to be sure. And in the back of my heart always resides an intense gratitude that I get to be here for all this.

Life really is good. Tough at times, absolutely, but most definitely good.

Off now to look for signs…

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.

Self care

All is well in the land of bionic hips! Once I get that sucker warmed up, I can walk with barely a trace of a limp, and I’m fully back to pre-surgery activity levels – minus the flexibility, but I expect that’s going to take a lot longer. They tested my metal levels at six weeks post op, and it’s amazing how they’ve plummeted (that’s good!). My chromium has gone from 110.3 to 17.7, and my cobalt from 96.7 to 9.4. I think normal levels are below 5, so I still have a little ways to go, but they should continue to fall.

That’s the good news. The slightly less than good news is that the vision in my radiated eye has taken a noticeable nosedive in recent weeks (perfectly timed with my pre-scan anxiety, more on that later). It’s not unexpected, just disappointing. Things had been holding steady long enough that I started to think that maybe that was as bad as it would get. But the doctors did say it would take 1 1/2 to 2 years to know exactly how much they fried my optic nerve, and I’m only at a year and three months, so I suppose this is par for the course. And speaking of disappointing, I’m starting to have more joint pain again, which could mean that my body is not a fan of cutting my RA meds in half. My rheumatologist has another drug he wants me to talk to my oncologist about taking in addition to the Plaquenil, but I was really hoping this half dose thing would work out. That way all my specialists would be happy and it wouldn’t matter if they talked or not. Hey, a girl can dream, right?

Is your head starting to spin a bit? Sorry. I do try to keep things separated into manageable little compartments (for my own sanity), but sometimes all three rings of my health circus start performing at once, and it really does get difficult to know where to look.

Really though, the cancer thing is in the main ring right now, because I have scans coming up next week. How has it already been six months?? Yes, the hip stuff proved to be a stellar distraction, but I am once again reminded that I have cancer. And I still haven’t figured out how to have cancer. I’m pretty decent at getting hip replacements, I’m getting better at having RA, and although I’m cranky about it right now, I’m generally pretty chill about the goofy vision. But I just don’t have this cancer thing figured out. Not yet anyway. It’s surreal when I think about it, really: every six months I go to the Mayo Clinic, knowing that at the end of all my tests and exams a doctor will tell me whether the clock has begun to tick, or if I’ve renewed the lease on my body for another six months. How do you prepare your mind and spirit for that?

In my case, it’s by getting thoroughly psychotic for the few weeks before the appointments (maybe longer, you’d have to ask the lucky folks who live with me). It’s like having really bad, really prolonged PMS. Everything makes me cry – happy things, sad things, dog videos on YouTube – you get the picture. I’m also quick to snap, less patient (not my strongest quality in the first place) and my language has gotten rather salty. In short, I am just not the best version of myself right now, and I don’t like it. I do remember a dear friend and neighbor who happens to be a cancer survivor gently warning me about this: “Jen, my friends and family just know that the few weeks before my scans I am not pleasant to be around.” And she’s been at this for years. Years. I don’t know why I thought that wouldn’t be the case for me, why I am so disappointed at my own weakness and vulnerability, but there you have it. I’m scared, I’m worried and I just want to get this over with. The funny thing is, just the other night I was chiding my dear, Type A firstborn, “you are so good at showing other people grace, but you are so reluctant to show yourself grace.” Hmmmm. Not the first time I’ve given my kids advice that I would be wise to take myself.

So that’s been the last few weeks for me. It hasn’t been all gloom and despair and brainlessness, trust me. I’ve had some lovely moments of humor and hope that have kept my head above the waves (and kept my family from having me committed). I know that in times like these I have to lean hard on my resources – my faith, my family, my friends, even my fitness. Just telling trusted girlfriends how I’m feeling, spending time in a good devotional or listening to music that pumps me up while I sweat it out on a spin bike is therapeutic. There’s also all the self care stuff, like getting decent sleep (ok not always successful but it’s a good goal) eating right (medicinal chocolate anyone?) and all those other things I see in the healthy living articles people post on Facebook and I keep saying I’ll try. Still, I’d expand “self care” to include things like chatting with my parents on the phone, picking Tessa up from play practice and hearing how much fun she’s having, laughing with girlfriends as we celebrate a birthday, watching my dog try to “play” with a bug she’s found (the bug always ends up dead, which is sad, but watching my dog is funny), going to the theatre, watching the birds at our feeder and the ducks on the lake, going on college visits with Riley… Too often as I’m wallowing in my own fear and worry, I forget that I have so many resources available to me, and so many sources of goodness and encouragement around me. I instead try to work it out on my own, and I get frustrated and feel powerless that I can’t save myself when the waves of emotion threaten to overcome me. But I don’t have to do this myself, that’s the thing. I only think I do. And then I hear the still, small voice saying, you’re not alone. I have an amazing family, incredible friends, a supportive community, and a great God who knows everything about me and loves me anyway. So I kind of stink at having cancer, big deal. If I can show myself some grace and lean heavily on my resources when things are hard, the struggles don’t go away entirely but they do get lighter, because I’m not doing all the lifting myself.

I do hope to get better at having cancer, even if I don’t ever entirely figure it out. I also hope to get better at these tough weeks before scans – and I REALLY hope I have lots of years to work on that. Life is indeed good. I try not to forget that.

Speaking of which, remember when I said last year that I wanted to take a spring break trip with my family? That I didn’t want to wait for a bad scan to plan the tropical vacation? Well it just so happens that as I write this, all four of us are on a plane bound for Hawaii, a birthday surprise from my awesome husband. A few days at Disney’s Aulani resort, then a stay with dear friends who live on the island. I can think of no better way to get my mind off the upcoming scans than sun, sand, umbrella drinks and people I love. Making memories…oh rats, here I go crying again. That really has to stop. Oh, and since this is a public blog, let me publicly say that my house is not empty – I have two attack dogs (if you think what the one does to a bug is scary, you don’t even want to see what she does to intruders), and our house sitter is a ninja. So don’t try anything shady. Seriously.

As for me, for the next few days “self care” is going to look a lot like a drink with an umbrella in it.

Cheers.

My magnetic personality?

Hey everyone! Sorry I haven’t posted anything. I really did intend to give a little “I’m doing great!” shout-out once a month, since that’s about when I start receiving worried emails and texts from folks, but life has been crazy busy (in a fun way), and there really hasn’t been anything to report. And that’s really the rule of thumb here: no news is good news. If you don’t hear from me, that’s a very good thing. It means I’m busy living and enjoying life!

Up until a few days ago, there was really nothing to update you on, aside from some more FAQ’s and random observations on living with cancer. The new plot twist actuall

My first half marathon post hip surgery

My first half marathon post hip surgery

y has to do with my hip (and if you’re Facebook friends with me, you’ve heard this, so you can skip to the next paragraph if you want. Totally legal). As most of you know, I had my hip replaced just a little over two years ago, a hip resurfacing surgery, to be exact. The bionic life has been glorious – no pain, great range of motion, and after a year I was allowed to start running again. Most of you also know how important running is to me – I’ve run 29 marathons, that’s how much I love to run. It’s more than exercise, it’s therapy, creative thought time, alone time or social time, time to challenge myself or time to relax and enjoy the scenery. I love meeting people at races, reading the funny signs that spectators hold up, high-fiving little kids on the route, and I love, love, LOVE finish lines. I have been so very grateful to have all that back in my life, courtesy of my oh-so-awesome bionic hip. So it was a bit of a shock last week when, in the middle of a college visit with Riley, I got a call from my orthopedist’s assistant. Apparently routine blood work revealed that my metal levels are “off the charts.” This is something that can occur in people with metal on metal implants, but it is rare (ah, but getting rare things is my specialty! Rich says I should play the lottery.). My X-rays at my two-year checkup were great, and my hip feels awesome, so the doctors are scratching their heads on this, because it doesn’t add up. So, I’m having an MRI on Monday (it’s been over 2 months since I was last stuffed in a tube. I was starting to miss it…). If they see any evidence that the metal is wearing or that my body isn’t tolerating it, I have to swap out my awesome, running-friendly hip for a traditional, no-running-allowed hip. Oh yeah, and have major surgery and all the recovery and PT that comes with that. Not cool. But the flip side of it is the possibility that my hip will look fine, and then we have to figure out why I am so overly metallic. I mean, I’m totally cool with just avoiding magnets for the rest of my life, but when you add in the cancer thing, that could be a game changer. Of course, who knows, maybe my radiation treatment is what is causing my excessive metal-ness in the first place. Anyway, I’ve been told to stop running for now, get the MRI and we’ll go from there. I will, of course, update you all if there’s anything happening. If, however, it’s determined that I’m a medical mystery I might be too busy banging my head against a wall to post anything.

So, enough of that. On to cancer updates – I mean, that’s what we’re all here for, right? The short answer is I’m doing very well. Thank you, good night.

Ok, if you want more, I will give you a few FAQ’s, for your enjoyment:

1. “How are you feeling?”
I’m feeling fine. Really. It’s a weird thing to have cancer and yet feel completely healthy, but I haven’t had chemo and all that goes with that, and my radiation was so specifically targeted at my eye that the only side effects from that are limited to my eye (unless, of course, we find out it’s responsible for my metal levels).

2.”How is your eye?”
Not too bad. My vision is definitely getting progressively worse, but it’s happening so slowly that I barely notice the changes. I’m still getting used to limited peripheral vision on my left, and I have multiple bruises on the left side of my body to prove it. I’ll figure it out eventually. My eye does get dry, itchy and/or irritated sometimes, but I think the doctor said he can get me eye drops for that.

3.”When are your next scans?”
September 29th. Same exact stuff I had in April, and hopefully with the same results – no, better results. We want to hear that the tumor is shrinking in ALL directions. Personally, I’d like to hear that it shriveled up and died, but they said it’s too early for that. But a girl can hope, right?

So that’s the scoop for now. Summer has been grand, and as long as I can avoid more surgery it will continue to be grand. Full of soccer games (Riley’s team made it to state!), college visits (seriously. Don’t ask where the time went) and tons of dance (Tessa, not me. She made the high school dance team and it will apparently be our life for the next 8 months or so. She is, of course, loving every second). And I am loving every second too. It’s a grand thing to be alive, especially at this crazy busy time in the kids’ lives. I love that I have a front row seat for all of it, and amazing family and friends by my side. Thank you all for always lifting my spirits, encouraging me and making me laugh.