General Update: Welcome to Medical Scranton

This one's for you, Kristina, and any other human being out there who understands the absurdity and frustrations of the healthcare system.

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I was texting with my friend Kristina last night, who has had three rounds of cancer herself, sharing with her some of the recent events regarding getting this anti-seizure med, as she knows all too well the realities of a complicated healthcare system. She's been living it for a number of years. I often think to myself in the form of movie parallels, and when I was pondering the whole matter yesterday evening, one scene popped into my head from Home Alone, when Kevin's mom is at the airport, pleading with the gate agent to find her a flight to Chicago so she can get home to Kevin after the family mistakenly leaves him home alone over Christmas vacation. As Kristina and I were texting back and forth on the situation, I sent her this clip on YouTube and commented: "I don't have an 8-year old son I'm trying to get home to but I sure as hell am in some sort of Medical Scranton trying to get to my meds." 

She laughed and said, "Medical Scranton should be the title of your next blog."

I joked with her I was going to rewrite that scene to capture the latest situation I went through with this anti-seizure medication approval. I figured I'd do it at some point, but not necessarily for two hours starting at 1:36 am last night. I can always tell I'm on to something when my brain is buzzing with words at all hours of the night and I'm losing sleep, crafting and rearranging sentences and paragraphs, frantically typing things into my phone as fast as my fingers can move, but still not fast enough to keep up with my spewing brain. That's when I know it's the good stuff. 

Or at least hope it's the good stuff.

So, here we are. The medical version of Scranton as found in Home Alone aka Medical Scranton. 

If this post had opening credits, it would say “inspired by a true story,” not “based on a true story,” (there are distinct differences!) as it goes without saying, the whole thing below is made up, and I used only the skeleton of the real-life situation to recreate the movie scene. I do not write all this to throw my doc’s office under the bus (I am big fan of this doctor himself, but obviously less-than-impressed with his staff at the moment). Rather, I write it perhaps to illustrate the bigger picture of the absurdity of the healthcare system at times; it just so happens that my doc’s office is in my crosshairs. And maybe I also need it for my own catharsis, to find some levity in the midst of a situation that was far more stressful than it needed to be. 

I want to acknowledge that for all intents and purposes, I live a life of incredible wealth and privilege. What I had to jump through in a single week is what some patients spend years wading through (or particularly in marginalized populations, never have the same 'privilege' of wading through). They are already tired and worn out from the physical realities of their condition, only to have to fight their way through a very complicated health system, met with resistance everywhere they go. I’m not here to offer a discourse on what should or should not change within that system. 

This is my own story, one that is filled with a lot of safety nets, including my own personality that bends toward I'll be danged if you're going to tell me 'no.' A lot of patients don't have the kind of energy or drive to pursue things. At the first 'no' received from their doctor, perhaps many would have simply accepted that and moved on, believing that to be the end of the road.

This is merely a small glimpse into what it took to get my new anti-seizure drug approved. I truly do not know what came over me to push back so hard against the doctor’s office. In some ways, it was out of character for me to be so assertive, especially in a medical setting. I’ve often lamented times in the past when I felt like my concerns or wishes were dismissed and I never spoke up for myself. Well, clearly that was not the case here. I felt like I was turning into a trial lawyer, writing mental opening statements, and mapping out how I was going to present my case and what questions I would ask in the cross-examination. You want to tell me this is an impossibility to get this thing approved? Watch me get it approved. 

I even surprised myself on the whole matter.

If you haven't seen Home Alone, or if you have, but don't remember the clip, I would suggest watching here as a primer/refresher:

Now, here's my rendition of how that scene went down this past week in the form of trying to get this medication approved:

Doc's office: It’s impossible to get this medication approved.

Me [said with suspicion]: It's impossible?

DO: I’m very sorry ma’am, but it is Lent.

Me [exasperated, beating my head against the wall]: What about another phone number I can call? 

DO [clicking through things on their computers]: Nothing. We are all out of phone numbers you can call. May I help you get some Zoloft to calm your nerves? 

Me: No, I don’t want some Zoloft. I want my new anti-seizure medication. 

DO: I’m terribly sorry, ma'am, but we are doing some of what we can.

[DO motions for another patient to step up to the desk with their prescription.]

Me [to the next patient]: Go ahead, I'm sorry. Doctors to see, drugs to take. Oh, I see you’ve got a prescription there. That's good.

Me: [Shoves them out of the way, as I move back to the desk.] Look, I have been through two surgeries, rehab, radiation, and eight months of chemo. I’ve puked my guts up, I’ve lost my hair, I’ve taken a nap nearly every day since last June. I’ve called Express Scripts who told me to call me you who told me to call Express Scripts who told me to call you - wait, who I am calling and where the hell am I? 

DO: Medical Scranton. 

Me:  I am trying to get access to my new anti-seizure medication! And now that I'm this close, you're telling me 'it’s impossible' and 'a waste of time'? No, no, no, wait! This is Daylight Savings Time, the season of perpetually increasing sunlight! 

[DO attempts to interject but I keep rolling.]

Me: I don't care if I have to come to your waiting room every day with a bullhorn. If I have to sell my soul to the Holy Spirit himself itself, I am going to get approval for that new medication.

DO: Um, ma'am, if there was anything I could do to assist you in this futile endeavor today...

Me [desperate]: Do it. Do anything.

Me [I jump, startled by a fellow patient coming up behind me]: What?!

Fellow patient: Excuse me. 

[Speaks to the DO] Can you excuse us for a second? 

[To me] Can I see you for a second? 

[motioning back to the DO] Excuse us. 

[Back to me] I couldn't help but hearing you've got a little bit of a dilemma. Well, we've got a crisis ourselves. 

[Motioning to his fellow sojourners in Medical Scranton] Allow me to introduce myself, Joe Medski.

 

[Reaches out to shake my hand] Ya know, the alpaca shearing king of the Midwest? 

Me: I'm sorry, did you say you could help me?

Joe: Anyway, I'm rambling on here. We also are trying to get to our meds. You can only take so many alpaca hooves to the head before you need some help, right? Our medications got cancelled, too, so we gotta fax some things into the Vortex.

[Motions over to fellow patient standing to the side.] You see that guy in the jacket over there embroidered with an alpaca? He’s going to rent us a nice, big fax machine so we can get out of Medical Scranton. Now, I heard you had some problems? You're trying to get approval for a new medication, so you don't sleep or something? Ah geez, if you gotta get out of Medical Scranton, we’d love it if you wanted to fax in your paperwork with ours. 

Me [with hint of awe and profound gratitude in my voice]: You’d do that for me? 

Joe: Sure! Well, why not. What are alpaca shearers for if not to fax paperwork? We all gotta get our meds somehow. We gotta send some things to our pharmacy benefits manager on our way to our third-party administrator and then to our PPO with maybe a stop at HR or the FDA, but admittedly, we’re still a little confused on that last part. Regardless, we’d be glad to slide yours in there while we’re on our way to the next black hole.

Me [overwhelmed with gratitude]: Thank you. Oh, thank you.

Joe: If you don't mind going with some alpaca shearing bums.

Me: No, I'd love to.

[Cue rapturous music. End of scene.]

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All that to say, no alpaca shearers were involved in my scenario, BUUUUUTTTTT, the alternative anti-seizure med that the doctor's office told me was going to be 'impossible' to get approved and would be a 'waste of time' did, in fact, GET APPROVED. Praise God in the heavens above, but Judas Priest and a popsicle stick. What a freakin' joke that whole thing was. And all it took was for them to answer ONE QUESTION - which they did via fax. I've stood on so many mental soapboxes this week that I should be squeaky clean by now with all the soap I've used up.

Now, the next prayer request is that the alternative drug would actually have its intended consequence of eliminating my drowsiness. Maybe by the time next I post, we'll know. 

Until then, if there's anybody else out there in their own version of Medical Scranton, don't lose heart and don't be afraid to advocate for what you need. Your voice matters, even if it seems like it's falling on deaf ears. May the fax be with you.

Reaching for Balloons

We're all reaching for something aren't we, whether literally or figuratively? Perhaps some are reaching down to scoop up a newborn baby, while others are reaching for the memory of a baby that was never born. Perhaps some are reaching for a job computer on which to answer emails, while others are simply reaching for a job - of any kind. Perhaps some are reaching for the laundry of a messy husband, while others are simply reaching for the hope of a husband.

We spend our lives reaching for things around us, hoping we can finally grasp them within our hands or in our hearts and minds. We reach and long for the 'good ol' days', what once was. We reach for memories. We reach for people. We reach for better health, sharper minds, healthier relationships, more satisfying careers, more wealth, more fulfillment, more joy, more, more, more, better, better, better.

I was paging through personal journals back in early February when I came across an entry I wrote that actually somewhat startled me: 

“I feel like my biggest struggle lately really has been my brain. Concentration feels impossible. My mind feels scattered all the time, like I’m constantly reaching for the string of a balloon that has already drifted to the sky. Trying to study feels monumental because my mind is a constant pinball machine.” 

Don't you just love a good stock
photo?

I wrote that snippet nearly five years ago in July of 2020, as I was studying for a certification exam for my job. Even then, my mind felt fragmented and I was becoming keenly aware of it, enough so to comment on it multiple times. I wrote another entry in April that same year, "My short-term memory is another piece I’m concerned about. Sometimes swear I have ADD. My mind feels so scattered and fractured all the time. I’ll get sidetracked in the middle of a task and minutes or hours later, finally remember what it was that I was originally doing. It alarms me sometimes." 

Now, some of you would laugh and say that's just aging, but I would have been only thirty-five at the time. Given that multiple doctors have told me I've likely had this tumor for years, it's not out of the question that something was going on even then, subtle though it may have been. I remember even discussing with one of my healthcare providers at the time how much I was struggling to concentrate and line up my thoughts. I chalked it up to living in a tech-heavy world filled with constant distractions. And maybe that's truly all it was at the time and it had nothing to do with my brain tumor. I'll never know conclusively, and quite frankly, it doesn't matter because it's not going to change the present circumstances.

But ever since I've stumbled upon that July entry, I've been haunted by that visual, my arm reaching for the kite tail of a balloon, only to find it slipping out of my grasp. And I've been asking myself ever since then, What is it that I've been reaching for? And what am I hoping will happen once I've attained it and pulled it back down from its sky-ward trajectory?

I have yet to fully answer that question for myself, but I continue to hover over and around it, reaching for an answer to the very question about reaching itself. It's also made me pause and think a lot about the ways that God has been reaching for me, and not just in the past year, but for all my life.

Carolyn Weber lamented in her exquisite memoir Surprised by Oxford of how it took her so long to come to faith and belief in God. She was agnostic most of her life, but then went to the University of Oxford in England to pursue her graduate degree. It is there that she began questioning what she believed and why. She ultimately came to faith in God and converted to the Christian faith as found in the Bible. She shared a conversation she had with her friend Dorian as they walked home from one of the college balls (and when I say ball, I'm saying the fancy gown kind of ball):

Dorian spoke, "As I've discovered, Caro, if you look back on your life, you'll see His hand in it, and over you. You'll begin to see with new eyes all the times that were subtle as well as flagrant opportunities to know Him."   

"True, and yet why did not come to know Him until this year?" I asked. 

"Only God knows," Dorian chuckled. "But maybe that's not the question. Maybe the real question at stake is, why did he keep trying?"

In other words, why did God keep reaching for her, or for any of us, for that matter? Poet Francis Thompson does not call God "the Hound of Heaven" for nothing, does he? No, for God is a pursuing God, a relentless God who deeply desires for people to come to know him, and not just know him, but to know him personally, even though in part on this side of heaven, but then to fully know him once in heaven with him.

In the book of Acts, the apostle Paul proclaims to a crowd gathered in the Aeropagus, which was a gathering place in the ancient Greek city of Athens for all the thinkers and philosophers, answering in some ways the question Dorian posed to Carolyn:

The God who made the world and everything in it is the Lord of heaven and earth and does not live in temples built by human hands. And he is not served by human hands, as if he needed anything. Rather, he himself gives everyone life and breath and everything else. From one man he made all the nations, that they should inhabit the whole earth; and he marked out their appointed times in history and the boundaries of their lands. God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us (Acts 17:24-27).

Why did God uniquely set each person in a unique century, in a unique year, on a unique continent, in a unique area, and in a unique city? He did that so that unique individual would have the optimal environment for seeking and reaching out to God. And not just to seek and reach for him, but to also find him. My existence as someone born specifically in the twentieth century, in a specific year, on a specific day, in a specific country, in a specific state, and in specific city, was so that I would have optimal opportunity to seek him, reach for him, and find him, even though he wasn't going to be far from me anyway. I am where I am, and you are where you are, so that we will reach for God and find him.

God desires to be found. And he's willing to go to great lengths to make that happen.

And in our reaching, we will find that he has been reaching back for us all along, just like Dorian told Carolyn. The real question at stake isn't why did it take us so long to reach for him, but rather why did he not relent in reaching for us?

When Jesus hung on the cross, his arms were stretched likely to his full wingspan, but I can assure you, in that moment, his reach was far greater than the mere width of that crossbeam, the mere width from his left fingertip to his right fingertip. Both in that moment and to this day, the cross was a display for all to see, that he and his Father were reaching for every lost and broken soul that has ever lived. The reach of the cross was not the length of a wooden crossbeam; it was the length of all eternity, across all locations, across all languages.

Maybe you've been reaching for him, maybe you haven't. The question at stake is, why is he continuously reaching for you? He’s reaching for you, whether you acknowledge it or are aware of it or not. 

That is no small love reaching for me, reaching for you.

I have not spoken in secret, from somewhere in a land of darkness;

I have not said to Jacob’s descendants, ‘Seek me in vain.’

I, the Lord, speak the truth; I declare what is right (Isaiah 45:19).

When we reach for him, for his beauty, his truth, his righteousness, his holiness, his glory, our seeking will not be in vain. 

May we all reach for Jesus even as we're reaching for whatever balloons we may be longing for. Perhaps we'll find him at the end of our balloon strings, waiting, reaching back. 

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Health Update

Whew. The past couple weeks have been a bit bumpy, both in side effects and in stress levels. I started cycle number seven, which means I would have been actively taking the chemotherapy March 11 through March 15. By the time March 13 rolled around, it was heading down hill. The nausea just gets atrocious, even with anti-nausea meds. Definitely threw up dinner one night. Couple other false alarms of wanting to get sick to my stomach and would just sit on the bathroom floor, waiting, and then nothing would ever happen. 

When it gets that bad, the hardest part is drinking and eating. Even water is disgusting to me at that time, which means I'm usually not getting enough fluids in me. Fruit juices seem to help the cause, although still not nearly the volume I would need to with water. It's also really hard to down my meds because I just want to gag all the time. I joked with my boss I was going to have to start playing the Chicago Bulls theme song, or some such hype music to get through my evening meds. (Feel free to post tips or other songs/hype music suggestions in the comments of how I can down meds when all I want to do is throw up.)  Of course, nothing ever sounds good to eat. I'm supposed to eat a 'well-balanced diet,' but when you're that miserable, eating kale or broccoli isn't exactly on the list of things that sounds appealing. 

Eventually I made it through to the other side and feel much better now. It's usually somewhere around Day 10 that I feel like a new person, and can function properly. Hopefully it's smooth sailing from here until the next round, which should be around April 7. However, this latest blood work showed that my white blood cells were the lowest they've ever been, so I was actually surprised when we moved forward without delay. It was mentioned that maybe we lower the dose in future cycles so that the blood counts don't take such a beating. I have my next follow-up with my neuro-onc on April 3.

As far as stress levels, that is related solely to issues with trying to get my possible new seizure med sorted out. Ya know, I thought I had some gumption before, but I am finding a whole new reservoir of it that I didn't know I had in me. I've really had to check myself because if there had been a broom within reach for several days this week and last, I'm pretty sure I would have turned into the Wicked Witch of the West. Thank God for the restraint of the Holy Spirit because if it's possible to get fired as a patient, I'm pretty sure I would have been if I had done and said what I really wanted to. I've just repeatedly hit the same roadblock over and over again - and surprisingly it's not with my insurance company! They've been great. It's with my seizure doc's staff. Good Lord Almighty, help me. The issue still hasn't been resolved, but I am praying to God it is soon, and that in the meantime, I would not fester and stew over the matter, like I am prone to.

Would appreciate your prayers on patience and that the process would unfold smoothly moving forward so that I can try the new medication to see if it helps the drowsiness I experience as a side effect.

General Update: Stars and Stripe Forever

Why it took nearly ten months for this question to dawn on me, I do not know. Maybe we can blame it on the brain tumor I've got going on upstairs.

All along I've been able to feel all the knots and bumps that now exist on my head. Obviously there are ones along the scar line, but about two inches farther down, closer to my right ear, there's another bumpy ridge line, just not as pronounced. So, I began to wonder, what all is making up these knots precisely? 

I messaged my neurosurgeon to see if they had pictures from the surgery so I could maybe have a visual of the skull plate they removed to get to the tumor. They responded by simply saying all of it could be found in my imaging files, which wasn't exactly helpful, as trying to find images in the recesses of MyChart is no small feat.

So, I asked the neuro-oncologist at my latest appointment, and said, "I know what I can feel with my fingers and the surgeon said it's in my files, but can you tell me what it all looks like?" 

And then he popped up this image on the screen:

I thought my eyes were going to pop out of my head. I guess I had a vague inclination that they had implanted something to hold my skull back together, but I sure wasn't envisioning this. This is an image taken straight from my latest MRI, from the angle as if you were standing over me, looking down at my skull. Mind you, things are the opposite on MRIs. The tumor is still very much on the RIGHT side of my brain, even though it appears on the left here. 

Those three 'stars' are what's called burr hole covers. There are two that sit directly on my scar line, what I'm calling the 'stripe.'  The third one sits farther down toward my right ear. They are fifteen millimeter titanium plates, each with six holes for four millimeter screws. So, when they cut part of my skull out in order to access the tumor, after the surgery, they simply put the bone plate back in and literally screwed everything back together. (From what I can gather, I don't actually need them the rest of my life, just long enough to let the bone fuse back together, but they design them with the intent to leave everything in. Thus, stars and (singular) stripe forever! And no, I shouldn't set off any airport security detectors.)

It is now quite possible that some day I could literally have a 'loose screw'! 

It also probably means that headstand I attempted to show my niece and nephew a few months back was maaaayyyybeee not the best idea. 😬

Once I put my eyeballs back in my head after that discovery, we further discussed the MRI findings, which showed that technically the tumor had shrunk evvvver so slightly, but he still classifies it in the stable category. But let's go with the shrunk category just for kicks! 

I start my next round of chemo tonight, which is cycle seven and puts me past the halfway mark! We are still doing the same dose I've been doing for the last several rounds, but I do keep running into bumps with my platelets and white blood cell counts dropping. They were both low this time, but apparently not enough to delay things, which surprised me.

I had an appointment with the seizure doc today for routine follow-up. We are going to switch some things up with the meds to see if we can curb this drowsiness I've had every day since last June when I started chemo. I told him if I'm choosing between a daily nap or a seizure, I'm taking the nap. So, it's not that I'm wanting to go too crazy with any changes, but I'm certainly more open to changes than at my last appointment, the more time passes from the last episode. I definitely want to err on the side of caution, but my life is definitely oriented around that morning drowsy spell. 

The non-arched St. Louis Arch

I started back to the gym once a week. It feels soooo good to have certain muscles moving again. Everything is still super slow and super gentle. My body has been wound so tight for so long that I just have to start by getting some things to loosen up. 

See also my spine, which is anything but loose.

I've had such stiff posture for the last ten months, using everything in my low back to hold me upright, that I don't even have enough stretch in my spine to put my socks on. So, one of the things we started with was just a simple reach, trying to totally let go of my spine so that I could get some curvature back. I bent over and Michelle, the co-owner of the gym and trainer at present, gently tapped my lower spine and asked if I could get anymore bend to it. I told her, "Michelle, I feel like a camel right now, I've got so much curve in my spine." I could tell by the sound of her voice, and the near-silent chuckle coming out of her that this was most certainly not the case. "I could serve drinks on your spine," she said in quiet, amused tone. She had me move over so I could see in the mirror. Yep, flat as a board. I kid you not, I felt like my spine was in the shape of the St. Louis Arch. Maybe they also put titanium rods in my spine while they were putting my skull back together with titanium plates.

But hey! We all gotta start (over) somewhere! I mean, good gravy, ten months ago, I wasn't allowed out of my hospital bed because I couldn't be trusted to stand upright, let alone walk, or touch my toes, for that matter.

So, hopefully in the coming months, my spine can maybe move from 2x4 straight to a little bit more of an arch. 

Here's to the stars, stripe, and some-day arches!