Month: April 2015

Cleaning glasses and taking carts

/ Jen / 1 Comment

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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

/ Jen / 5 Comments

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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…

Martini time!

/ Jen / 11 Comments

imageWell you can’t say you weren’t warned about the brevity of this post. My eyes are indeed still blurry, but my scans are CLEAR! I’ll elaborate in another post, but the bottom line is my liver and lungs look good, and my tumor is shrinking. It’s also bleeding, so I will now be getting Avastin injections in my eye to prevent a major hemorrhage that would leave me totally blind in that eye. Yes, I’m grossed out. No, I’m not really thinking about that right now. Because, um, did I mention that my scans are TOTALLY CLEAR? Because they are. In case you missed that. Oh, and my oncologist and my rheumatologist completely hate each other, but I don’t care right now. Because I just renewed the lease on this body, and I am pumped. Shoot, now I’m going to have to lose that vacation weight…

I wish I could explain it or describe it, because it was beyond amazing, but I absolutely felt your prayers and thoughts today. I am so humbled and grateful, and “thank you” doesn’t seem quite adequate, but it will have to do until I think of a better way to express it. Thank you. Thank you for coming on this journey with me, for lifting me up, for supporting my family, for loving us and encouraging us. Thank you for your endurance and your perseverance. Thank you for being awesome. Because you are.

Now if you’ll excuse me, it’s martini time…

Big Things

/ Jen / 11 Comments

“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.