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. 

____________________________

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!

Time to Face Facts

As I mentioned in my previous health update, I recently had to submit my current FMLA paperwork to my HR department a month or so ago. When I got the completed forms back from my doctor, I noticed the answer to the question of how long they estimated my "condition" to last and the answer was simple and blunt: "Lifelong, non-curable." 

Well, then.

Welcome to life on Planet Earth, Courtney, in case in the course of the last year you lost track on which planet and in which body you dwell.

How do we move through life being confronted by things such as lifelong, non-curable conditions, and yet still have faith that the story could go another way?

We respond by following in the footsteps of Abraham, a man whom God had promised would become the father of many nations, despite having no children:

Without weakening in his faith, [Abraham] faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised (Romans 4:19-21, NIV).

I can face the fact that I have a lifelong, non-curable form of cancer. I can acknowledge it, I can talk about it, I can accept that as my reality. I have cancer. Period. End of sentence. It doesn't need to be followed by any other statements. It can just hang there. No ribbons. No bows. No nice, tidy packaging. As we like to say around here, "Ain't no use trying to put lipstick on a pig."

I have cancer. It is incurable, and I will have it until I die.

Facing that fact doesn't weaken my faith or make me less of a Christian. There can be the temptation in certain theological camps among us that if we admit to a limitation of the body, we, by extension, admit a limitation of God, as if the one precludes the other. For example, some might say that someone isn't healed of something because that person didn't have enough faith to be healed. But if I think about that long enough, I can’t help but wonder if the twisted underbelly of that statement is, “You admitted defeat and that just isn't something with which God is willing to work.”

People who make such statements, believing my volume of faith, or lack thereof, is directly tied to my healing cause my blood pressure to instantly rise.

Facing reality does not mean my faith simultaneously vaporizes. This is not a zero-sum game.  

There are some of you that can face the fact that doctors have told you you’ll never bear children. There are some of you that can face the fact that you are in a wheelchair and will be for the rest of your days. And you can face those facts without weakening in your faith, just as Abraham faced facts about his body, which was "as good as dead." 

"Yet he did not waver through unbelief regarding the promise of God..."

Yet he did not waver.

We can face the realities and limitations of this body in which we dwell, and yet not waver in the belief the God who made this body can work miracles.  I can trust a limitless God who can do the unimaginable with my limited body and limited imagination. 

I can face the fact that I have a life-long, incurable form of cancer.

And yet, and yet, still not waver in my belief in God and his promises, or that he can pluck this tumor from my brain and make me cancer-free.

We can face the limitations of who we are while also trusting in a limitless God.

I love how Romans 4:18 frames it, "Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, 'So shall your offspring be.'"

We have permission to hope against all hope, against all science, against all doctors, against all medications, all of it, but that hope still has to be rightly placed. Disappointment - and anything along its continuum - is always attached to misguided hope, 100 percent of the time. 

Next to a section in Romans 5 in my Bible, I scribbled a note years ago, sandwiched between other notes that says, "Misguided and misplaced hope always results in disappointment."

It's a comment on verses 3-5: "Not only so, but we also rejoice in our sufferings, because we know that our suffering produces perseverance; perseverance character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" (NIV).

That family member of yours go and do something you didn’t agree with and you’re disappointed? Perhaps at the root is a misplaced hope because you hoped they would be something more than human and less than sinful. 

You thought you’d get that scholarship for school but didn’t and now you’re discouraged? Perhaps at the root is a misplaced hope because you thought life would always go your way and the path would be easy. 

You thought the person you voted for President would win but didn’t and now you feel this sense of impending disaster? Perhaps at the root is a misplaced hope because you thought your fate and the fate of a nation was tied to a singular human. 

You thought you’d marry that woman that was everything you’d always dreamed of but now there will be no wedding bells and you're disillusioned? Perhaps at the root is a misplaced hope because you made her - or the idea of marriage - your idol. 

You thought your adult child would be home for the holidays but couldn’t because they went to their in-laws instead and your dissatisfied? Perhaps at the root is a misplaced hope because you thought people would bend to your will like you wanted. 

Dare I even say it's possible to have a misplaced hope in God himself? 

You thought he’d protect you from pain but didn’t and now you are disenchanted with the notion of him? Perhaps at the root is a misplaced hope because you thought God was a genie in a bottle whose primary job was to never let you or anyone you love suffer. 

You thought he’d grant you a life with every longing fulfilled but here you are, still longing, still unfulfilled and now very much discontented? Perhaps at the root is a misplaced hope because you thought your life was going to work out in a very linear fashion, thankyouverymuch. 

You show me the depths to which you are disappointed with man or God, and I will show you the depths to which your hope was misguided or misplaced. I’m not saying we should be unfazed or unmoved by the world and our experiences, that we become unfeeling robots. And I’m not saying we can’t hope for things or expect people to act in a certain way. And I’m not saying we can’t ever be disappointed. Disappointment in and of itself is not sinful. 

What I am saying, though, is that when we are disappointed, disillusioned, devastated, dissatisfied, etc., we need to take stock of what that disappointment indicates and pause long enough to consider whether our hope was pointed to something or someone that it shouldn't have been. There has to be something much greater and much stronger than broken man and a broken world that holds our hope together. Because when we look to incomplete, broken things to complete us, that’s a lot of pressure on something that was never designed for such a load. When we hope in broken things and we find they don’t do what we thought they’d do, the end result is that they will break us.  

There's a line in the movie Paper Towns I have come back to often over the years to check my own roots of disappointment, “It’s a dangerous thing to believe a person is more than a person,” meaning it's dangerous to believe that the people around us are something other than what they are, that they are what idealize or romanticize them, or dare I say, idolize them to be. I haven't fully thought this through so maybe I’m off,  but my guess is that Jesus never experienced disappointment, and not as a result of being perfect, though he was, but as a result of always properly placing his hope where it belonged, chiefly in his Father. It says in John 2:24-25: "During the time [Jesus] was in Jerusalem, those days of the Passover Feast, many people noticed the signs he was displaying and, seeing they pointed straight to God, entrusted their lives to him. But Jesus didn’t entrust his life to them. He knew them inside and out, knew how untrustworthy they were. He didn’t need any help in seeing right through them" (The Message).

Jesus was no fool. He knew those people had a misguided and misplaced hope, a hope placed not in Jesus himself, but merely in the signs he performed. But Jesus knew where his hope needed to be, and it wasn't in men or the world around him. He knew of what men were made and that they were not designed to bear the weight of his hope. They would soon be nailing him to a cross. So, no, he knew not to put his hope in them. His hope was in his Father.

He put the right hope, in the right place, and he was not disappointed. He was instead "exalted to the right hand of the Father..." (Acts 2:33), a place where nothing is misplaced or misguided.

I can face the fact I have a lifelong, non curable form of cancer without it breaking me because my hope is in something greater than this broken body. 

It is in Jesus. 

___________________________

Comment on comments:

I had an epiphany at 4:26 am this morning while my heart and mind were on fire with this post and I was frantically texting words and thoughts into my phone, willing my fingers to keep up with the pace of my brain. (Remember the days when it took me an HOUR to type out a single post?? Praise God that is no longer the case, as this post probably would have taken me something like 36 hours to punch out!) 

I had historically asked people to include at least their first name, but I realized requesting people to include their name or their initials in the comments was perhaps inhibiting folks. The request was born out of my own curiosity and desire to know who was sitting on the other side of a post. One-sided conversations can only last for so long. (Thank you, though, to those regular commenters! I have read everything you have posted and find them helpful and encouraging!)  But I also know there are plenty of passive observers out there who are quite content to be unknown but still have thoughts on what I write and would maybe like to share. (Or maybe you just want to say "Hey, can you make your font bigger or the layout different on your mobile version?" I'm also open to hearing things that would help the reading experience better/easier.)

Time to fling the doors open wide. 

Let’s hear it from all you anonymous folks in the back and the balcony! 

You’re under no obligation to include your name (not that you ever were, technically, but I know peer pressure is a powerful thing). Since I’ve restricted the ability for the site to be crawled by search engines, I know the only way you’re reading this is if you got the direct link somehow. You either know me or know somebody who knows me, or are somehow my kindergarten teacher’s second cousin by marriage. However the six degrees of separation may work, comment away if you so desire!  Maybe we’ve never even met in real life but you faithfully read; I’d love to hear from you, namelessness and all. 

Now, you declare your undying love for me and ask me for my address without sharing your name, I’m going to regret opening this door, and somehow wish I did know your name so I could file a restraining order against you. You can be anonymous but don’t be creepy anonymous. Deal?

Ex Cancer, Scientia

Ex luna, scientia. 

From the moon, knowledge.

This was the motto of Apollo 13, a mission on which NASA intended to complete a lunar landing, conduct experiments, and gain knowledge of the planet. Only the crew never made it to their intended destination. They were thrown wildly off course when an oxygen tank exploded and disabled part of the life support system.

Instead of being famous for landing on the moon, astronaut Jim Lovell would be famous for uttering the words, "Houston, we have a problem," which was a bit of an understatement in hindsight. On the morning of my first seizure that led to the discovery of my tumor, I texted a friend later that morning while still in the ER and wrote something to the effect, "Well, I've had a bit of an eventful morning..." We laughed about it later because she told me only I would utter such a statement relative to the circumstances. It was my own way of saying 'Houston, we have a problem.'

Because I definitely had a problem on my hands. God went and stirred my O₂ tanks, so to speak, which led to things blowing up, and the trajectory of my life forever altered. I wasn't entirely sure at the time how I was going to make it back to Planet Earth, back to safe, familiar ground. And not just make it back, but make it back using the best trajectory for re-entry that didn't leave me incinerated in a blaze of fire and ash. Two surgeries, a round of radiation, more seizures than I cared to experience, a lot of rehab appointments, and six of twelve cycles of chemotherapy later, we might just be getting somewhere that doesn't involve a constant sense of waiting for things to blow up.

After the brain biopsy in February of last year and the confirmation of the diagnosis, there was a lull between that and the craniotomy in mid-April. In that space, I reached out to Michelle, co-owner of the gym, and asked if we could see about putting some workouts together while I was out of commission and wouldn't formally be in the gym anymore, but with all these caveats of what exercises were off-limits because of the weakness and motor control issues I had, even before the craniotomy. 

I asked her if she had ever seen the movie Apollo 13, particularly the one scene where some of the guys from Mission Control dump a pile of parts on the table and then tell the rest of the team they have to assemble a makeshift carbon dioxide filter using only items taken from the pile of parts. She was familiar with the scene, and I said, "That's what this feels like. 'Here's all the working parts Courtney has, guys. Let's figure out how to get her home, using only this, this, and this.'"

I went to the gym today for a formal baseline assessment session with Michelle, the first since the seizure one year ago. As a joke, I bought us both stickers of the official insignia of the Apollo 13 mission. I now regularly use the phrase "Let's Apollo 13 this thing," in a variety of life circumstances, meaning let's figure out how to rig this thing - whether this 'thing' is my life or whatever else the phrase may be applied to - together with the limited resources we have. 

I wanted - and still do - anybody and everybody who knew anything about cancer and health at the table, housed in my Mission Control. I can't make it back home alive based on my own knowledge, no more than Jim Lovell could have gotten himself, Fred Haise, and Jack Swigert back to Planet Earth alive based on his own knowledge. He needed every ounce of knowledge housed in Mission Control to figure out the math and science necessary to keep them on a path headed home, and preferably with a pulse.

Neuro-oncologist? Pull out every degree and every shred of knowledge you have ever encountered in your years of medical training. Go.

Neurosurgeon? Review every surgery you've ever done like this before and study it backwards and forwards. You better know the brain like the back of your hand. Go.

Occupational therapist? Find the exercises necessary to address neurological issues on the left side of the body. Go.

Radiation oncologist? Show me exactly where and how this radiation is about to go down. Explain it to me in layman's terms. Go.

Nutritionist? Tell me what is going to optimize my existence and not leave me wasting away to nothing. Go.

Physical therapist? Start talking. Go.

Acupuncturist? Break open those needles. Go.

Speech therapist? Pull a seat up to the table. Go.

If I thought someone possessed knowledge I didn’t have and if it was knowledge I thought was going to keep me alive, I wanted them in Mission Control. 

Ex cancer, scientia. 

From cancer, knowledge.

But I also was gaining my own knowledge that would never be found in a textbook, nor in anyone else's medical degree, skillset, story, or memoir.  It was knowledge I could gain only through the process itself, through everything falling apart and things being shoved wildly off course. This entire blog from the last year could serve as Exhibit A, the things I've been learning from and because of cancer. Knowledge unique to me and me alone.

It has been very expensive knowledge to gain. And there was no way I could have studied for it, just like none of the NASA guys had ever had to figure out a way to make things fit together that were never designed to fit together in the first place in order to keep the crew from dying of asphyxiation. But they did. They Apollo 13'ed the thing.

Jim Lovell may not have made it to the moon on that 'failed' mission, but he did come back to Planet Earth alive and, I imagine, with knowledge. It wasn't knowledge of the moon, as there would never be a lunar landing for Jim in his lifetime. But I have no doubt he came back to Planet Earth with a different understanding of the world he once knew - perhaps a better, richer, fuller understanding. 

I don't know what my equivalent of the 'moon' is, but I can't help but wonder if the knowledge I gained by not landing there is infinitely more valuable than the knowledge I would have gained if I had.

From sorrow, knowledge.

From joy, knowledge.

From peace, knowledge.

From disability, knowledge.

From grief, knowledge.

From adversity, knowledge.

From depression, knowledge.

From anxiety, knowledge.

From hope, knowledge.

When our lives are thrown off course and leave us in places we never expected, are we willing to be trained by that experience, to gain wisdom and knowledge from it? Or will we allow bitterness and resentment to settle in, defiantly refusing to have our sharp edges smoothed, because things didn't go like we planned?

Ex luna, scientia.

Ex cancer, scientia.

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Health Updates

Ya know, there's nothing quite like reading fresh FMLA paperwork that your doctor just filled out, and in the space where it says to "provide your best estimate of how long the condition lasted or will last," they simply write "life long non curable." Womp, womp, womp. To see it written like that wasn't any sort of fresh punch in the gut. It's just reality. Kinda like, "Well, isn't that a bummer."

In other far more exciting news, I got my first legit haircut since last February that a) was by choice, and b) did not involve me shaving it! All of the hair I lost due to radiation (the left photo, which was kind of the worst point of the hair situation) has grown back in (the right photo), although the length still doesn't quite match the other side where I didn't lose any, but we're slowly getting there. I actually don't think I'll go back to my old hair style. I rather like this shorter cut. I just need more hair to keep my head warm. I still wear a beanie almost 24/7.

I was supposed to start chemo cycle #6 last week, but my platelets dipped again last blood draw, not as low as cycle #4, but enough that we needed to delay so that they could rebound some before moving forward. They rebounded enough by this past Monday that I started the pills this past Tuesday night. 

Once this cycle is done, I'll be at the halfway mark. I have my next MRI scheduled for the end of this month, as well as a six-month follow up with the radiation oncologist. I will also have a six-month follow up with the seizure specialist at the beginning of March. So, generally, a handful of benchmark/follow up appointments coming up.

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To The Woman of One Year Ago

Next week marks one year since life was upended - February 3 was the first seizure, February 5 was the brain biopsy, and February 7 was the day of the official diagnosis - and I've been thinking a lot about what I wish the me of one year ago had known about what was about to unfold.  If I could stand face-to-face with that woman, what would I tell her? I've always been someone who likes to know what to expect in advance. It's probably partly why I enjoy my job as an event planner - I can help other people know what to expect, where to go, what to do, how to navigate events and spaces. When you know what to expect, you take the edge off the uncertainty and ambiguity, lessen the anxiety associated with the unknown. Except that's not life most of the time. Most of the time it's hairpin turns that weren't on the map. It's hurricanes forming offshore that no meteorologist saw coming. It's loss and death and grief and heartbreak that were just hanging out in the abyss of some unknown you had not yet encountered. Life is punctuated, italicized, bolded, and underlined by the unknown.

If I could take the collective experience of this past year and give a grand speech to the me of one year ago, what would I say to her about all that is about to happen, to help her know what's coming around the hairpin turn? (Yes, I know parentheses would not be used while speaking, but let's overlook that fact for the sake of this post, shall we?)

This is what I would tell that woman:

You and I both know you like to walk into situations knowing what to expect. So let me help you manage those expectations about how the next twelve months are about to go down. (Your neuro-onc will be exactly zero help in this department. You will come to despise the phrase, "It's different for everyone," which is basically a non-response response he will use so many times you’ll want to launch out of the exam chair and slap him. I’m not saying you will do such a thing; I’m saying you will want to. Just ask your parents. They were there to witness the moment.)

You are on the edge of a precipice, you just don’t know it yet. You are about to free fall into what will oddly be the most gloriously hope-filled while simultaneously most misery-filled time of your life. You will take up swearing with greater regularity than ever before; particularly and surprisingly, the F-word will be your word of choice. You will toss around F-bombs like candy at a parade. (Your mother will not be pleased, your friends will be surprised, but in turn, you will be surprised to learn one of your sweetest book-loving friends will violently launch a book across the room when she learns of your diagnosis. You have good friends who know when it's okay to throw things and drop F-bombs in your honor.) You will finally get to fulfill that secret wish of yours to shave your head, but not under the circumstances you would have ever envisioned. In fact, you’ll shave it so many times eventually you will stop crying when you do it. You accept it as a new normal. (But you should still ask the neurosurgeon to shave your head in its entirety during surgery in April, none of that partial nonsense. You are going to look ridiculous when he does that.)
 
Your search history will soon be filled with words like “oligodendroglioma,” “Temozolomide,” and “morbilliform rash.” But you made the right call on not searching for the prognosis for cancers such as yours. The answer won’t matter to you then and it still won’t matter to you now.
 
You will face days that are unimaginably hard, the hardest of your life thus far, and when you scan the horizon line of your future, you will wonder if the light will ever peek over that line again. It will. You will scan that same horizon line of the future and wonder if your left arm will always be this clumsy, dysfunctional thing attached to your body, destined to a lifetime of one-star Yelp reviews and tremors. It won’t. And yes, you will get through more than one rehab appointment without crying. Pinky promise.
 
You will discover that chemo and radiation are not the blackholes you thought they’d be. Sure, there will be bad moments, but take to heart now the words a friend will speak to you in the wake of your upcoming surgery in April: “So often we dress rehearse tragedy instead of joy.” Dress rehearse joy. Don’t dress rehearse puking your guts up. Don’t dress rehearse a neverending life of depression, sadness, grief, and death. Dress rehearse a life filled with joy amid the sorrow and a peace deep in your soul that can only be explained by Jesus. Dress rehearse the day when the seizures stop because the day will come when they do.
 
You will be overwhelmed by the sheer volume of mail, texts, and gifts you will receive from friends from all stages of life. You’ve spent decades collecting and investing in these friends, now reap the benefit. They want to love you, and they want to show you, so let them. None of them are going to care if you send a thank you note or not. Just don’t communicate with anyone in a written format for about a week or two after your surgery in April. Girl, just don’t. The writer in you is going to look back at texts and be horrified at the gibberish you communicated. Spare yourself the embarrassment.

Ignore your neurosurgeon; get that neuro-psych eval scheduled, no matter how long he tells you the wait is or that the results won't be of any value. 

Don’t procrastinate on scheduling that appt with the integrative oncologist.   

There will be that stretch in April and May racked with seizures, rehab, depression, and overwhelming grief and fear about starting treatment. You will feel like you are in a dogfight worthy of Top Gun. It will be no walk in the park, Kazansky, I can assure you. But I can also assure you eventually the fighting will ease and you’ll find yourself back on solid ground and your plane intact. Sort of. Mostly.  

Don’t go back to work a mere 3 weeks after your April surgery. Give yourself more time. You’ll have ample time off stashed to cover yourself. Take a chill about whether you're going to lose your job and your health insurance. It's going to be fine. 

Don’t bother with the ginger chews for nausea. They’re like sucking on Pledge-flavored taffy. You don’t like ginger to begin with, so don’t kid yourself. 

Go to Kristina’s wedding in July, and wear that black dress you bought inspired by Erin Krakow in the Hallmark movie It Was Always You.

Celebrate your 40^th at your own house with your friend Emily, not some cabin in the woods. Because at that point you’ll still be living with your parents (Surprise! You’re about to move in with them for seven months!), so going to your own house is going to feel like a treat all its own.   

Be patient with yourself. Rome wasn’t built in a day, and neither will a brain with a 2-ish inch tumor heal in a day. Your body is about to do all sorts of weird things. Keep calm and carry on. 

Don’t take that antibiotic during radiation. Save yourself from the most ridiculous rash of your life.

Watch out for that day when you go to Amish country with your mom in October. Load up on that anti-nausea medication. 

Watch out for that lady who asks you for medical advice on that live radio interview. 

You will learn to hug your mom, really hug her. Gone will be the days of that half-hearted wimpy stuff you’ve spent most your life doing. And you and your dad are going to develop this odd little handshake that isn't really a handshake, but a series of fist bumps, hand fireworks, and head rubs.

Don’t worry, you’ll be able to renew your driver’s license without having to take a photo of you with no hair. The wonder of progress is that bureaucracy isn’t always destined to exist in the Stone Age. They’ll let you renew your license using your old photo. And bonus! You won’t even have to leave your couch to do it.  

You won't discover until the end of cycle four about the secret-ish oncology-specific lab on the third floor that gets your blood results before you even get out of the parking garage. Take advantage of this lab from the beginning.  

Oh, and make sure you keep all your trash cans emptied and ready for chemo cycle four.  Brace for impact on that one. Just go ahead and skip the dress rehearsing joy part because it ain’t happening. 

And for the love of Pete, cut sugar out sooner so that your shoulder quits hurting, ya big dummy.  

And then, I would close by saying to that woman, pressing one hand to each side of her face ever so gently, pull her close, look her dead in the eye, and whisper with conviction, “Your God is good and your God is sovereign, just like you told the nurse on the day of your diagnosis. He’s going to prove it, and you’re.going.to.make.it. One day at a time. My God, woman, you're going to make it.”

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Health Updates

I figured if my great-niece Stevie can get her own monthly photos posted of the first year of her life, why can't I do similarly and post yearly photos even though I'm 40? While it's not one year since the surgery and shaving my hair, I am happy to say I've now got a bit of a Will Howard-esque (QB of Ohio State for all of you non-football fans) haircut going now. It's just a touch too short to fully cover my scar, and I still live in a beanie hat practically 24/7 (it's amazing how much heat you lose from your head!), but it won't be too long before I go back to my stylist and get it trimmed evenly.

This latest cycle was significantly less dramatic than the last one, thankfully. No vomiting, no laying on the bathroom floor. Nausea? yes. Decreased appetite? Yes. I'm trying to pack on some weight as I've lost 15 pounds since the surgery. There wasn't much of me to start with so I'm working on getting healthy food in me when I can. Although, that donut I ate a couple weekends ago was gloriously delicious.

I saw the neuro-onc earlier this week for my routine monthly check-in. (And yes, he used the phrase, "It's different for everyone." Drives me bonkers.) We are going to keep the same dosage for the upcoming cycle, which will start at the end of next week (pending no squirrelly blood results) - and will mark the halfway point of chemo! At the end of February, I will have my next MRI. I will also see the radiation oncologist for my six-month follow-up since radiation ended at the end of February. 

Ultimately, I have far more good days than bad days. I'm trying to connect more with friends, but that has its own challenges as it feels like there is such a backlog of people to catch up with. The conversations that are the toughest physically are the ones where I end up shouldering most of the talking. I get winded and I can tell cognitively things start to take a hit and I get a bit disoriented at times. So, if you're around me - you're gonna have to talk about yourself, too, so I can get a break!

I'm trying to get a lot of routine healthcare taken care of - eye doctor, dentist, dermatologist, etc. As my friend said, "Everybody needs their own healthcare concierge." Keeping up with the routine stuff now feels like a chore all its own, but I'm grateful to have baselines established in other areas of my health. I'm scheduled to head back to the gym for my first session the week of February 10, which I am really looking forward to getting back into shape, slowly but surely.

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Eternity in The Human Heart

I've given more than a passing thought in recent years, even prior to my diagnosis, about our culture's obsession with anti-aging. Make-up products, supplements, diets, workout regimens, healthcare choices, all aimed at living longer and longer. There's even a conference for the ultra-wealthy, held in Switzerland, called the Longevity Investors Conference, where an elite group of insanely wealthy people gather to discuss ways they can live longer and how they can fund the research and science to make that happen. It's private, invitation-only, and guests have to pony up tens of thousands of dollars to attend. 

It's a head-scratcher for me.

Do I want to be healthy? Yes. 

But do I really want to live longer on this planet, in this body, among this kind of brokenness? No.

This planet we tread is a mess. And this body in which I dwell is a mess. And everybody around me is a mess. We are ravaged by the results of sin. We have a conference for people who spend millions of dollars trying to live longer while there are millions of people dying from preventable diseases that cost dollars to prevent. These people dying of preventable diseases? They, too, want to live longer. But they aren't trying to make it to 120 years old; they are just hoping to make it to twenty days old, twenty months old, and twenty years old. Making it to 120 years old is unfathomable. And yet - and yet - there is something inherently ingrained in all of us that makes us long to live forever. 

Because what that conference - and our culture - puts on full display is this truth: We don't want to die early - whatever 'early' may mean. We are desperate to live longer, to live forever, and yet we can't figure out how to make that happen based on our own knowledge and our own willpower. We can't figure out how to solve the longings of our own hearts.

Famed atheist-turned-Christian-theologian, C.S. Lewis, commented in a series of letters he exchanged with Sheldon Vanauken in Vanauken's book, A Severe Mercy

C.S. Lewis asked how it was that I, as a product of a materialistic universe, was not at home there. 'Do fish complain of the sea for being wet? Or if they did, would that fact itself not strongly suggest that they had not always been, or would not always be, purely aquatic creatures?' Then, if we can complain of time and take such joy in the seemingly timeless moment, what does that suggest? It suggests that we have not always been or will not always be purely temporal creatures. It suggests that we were created for eternity. Not only are we harried by time, we seem unable, despite a thousand generations, even to get used to it. We are always amazed by it - how fast it goes, how slowly it goes, how much of it is gone. Where, we cry, has the time gone? We aren't adapted to it, not at home in it. If that is so, it may appear as proof, or at least a powerful suggestion, that eternity exists and is our home.

This desire to live forever is born from an inherent knowing that we are supposed to live forever, just not here on Planet Earth, but rather in heaven with God. Ecclesiastes 3:11 says, "[God] has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." 

That desire to live forever that wells up within you? It should point you to the heart of God. He's the one that put that desire there. It is a good and right longing, but not one you will solve on based on your own effort and willpower. You can use every anti-aging cream known to mankind, drink every version of a healthy smoothie there is, and exercise your way into oblivion. And at the end of the day, you don't get to choose how long you live. But you do get to choose where you get to live after death comes to your door. There are two options: Eternity with God in heaven, or eternity apart from God in hell. 

Look, I'm not saying we don't take care of our bodies and treat them well. They are a gift God has given us, we are to steward them well and not treat them like garbage. But as we can see first-hand, I treated my body well and did a lot of things right - ate well, slept well, drank water, worked out - and I still got cancer.

Prior to my diagnosis, I often thought I didn't care how long I lived. However long I lived, I lived. But then when the diagnosis came and suddenly the illusion of how long I lived was seemingly wrested from my control (as if I had any to start with), I found myself desperately praying that God would grant me a long life. I didn't - and still don't - know how to reconcile those two realities within me. I don't want a ridiculously long life, but I'm fearful, too, that I will die early, though. I'm not sure where that leaves me.

My friend Myrt always said she wanted to live to be 80 and then she wanted out of here. She wanted to die five minutes after her husband, Paul, so that she had enough time to tidy up after him and then head out. They had lived full lives, accomplishing everything on their shared bucket list. But Myrt did not get her wish. Paul died in 2014, and she did not pass until 2017. So, not only did she live past 80, she also did not die five minutes after Paul. She wasn't openly bitter about the circumstances and hostile toward God (that I was aware of), but she didn't shy away from expressing her occasional unhappiness over the matter.

But this is the weight of the matter - Paul did not die early, and Myrt did not die late. My friend Jonathan did not die early at thirty-one. If I die tomorrow, I will not die early at forty. 

So all those investors at the longevity conference? I don't know, maybe they will make it to 120 years old and be in perfectly good shape until their last breath, but the day will come when they will take their last breath, somehow, some way. Not a single one will be able to escape death. But if one of them drops dead at fifty? 

They will not have died early. They will have died precisely at the moment a sovereign and holy God intended they should. And no anti-aging cream or longevity conference can override him.

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Throughout this past year, I have returned countless times to the words of pastor Matt Chandler, who also happens to have a more aggressive grade of the same type of brain cancer I have, roughly the same size of tumor and same lobe of the brain. He was diagnosed fourteen years ago.

No ER For This Kind of Pain

I can feel the start of the metaphorical hemorrhaging, the spilling over of trauma into other parts of my life. I'm not sure what kind of tourniquet exists for such things. I knew I’d start seeing the emotional bleeding at some point, I just didn’t know when, where, how, or the severity of the bleeding. Donald Miller said in his book A Million Miles in a Thousand Years, after the end of a significant relationship, "I knew then the shock was wearing off. A certain fear grew. They don’t have an emergency room for the kind of pain that is about to happen to me, I thought" (194). I've been to the ER for a seizure, which led to the discovery of a giant brain tumor, but there is no such ER for what I'm experiencing now.

As I approach the one-year anniversary, I feel the weight of this past year starting to catch up with me. As one friend noted from her own cancer experiences, it feels like trying to clean up an oil spill with a paper towel. Impossible. I feel the hyper vigilance taking root. So many things gets flagged as warning signals in my brain. Trauma doesn’t allow a person to differentiate in a healthy manner anymore, and I'm losing the ability to differentiate between what's safe and what isn't. So many things feel untrustworthy, a danger, to me right now. 

My own mind can’t be trusted. 

The world around me can't be trusted. 

And most of all, perhaps God cannot be trusted.

Tish Harrison Warren wrote in her stunning book Prayer in the Night

It was a gray Sunday morning when I was in college. A few months before, a three-year-old boy in our congregation had drowned. Our church was still staggered in grief as I sat listening to my pastor, Hunter, preach about trusting God. "You cannot trust God to keep bad things from happening to you," he said. I was dumbstruck . . . But Hunter's point was that God does not keep all bad things from happening to us. He cannot be trusted to do that because he never made that promise. Doing so is, apparently, not his job. Our Creator lets us remain vulnerable (22).

Doggone it.

I'd prefer it, God, if you did make it your job to never let bad things happen to me and to not leave me vulnerable.

I see the hemorrhaging playing out most tangibly right now in the physical house I dwell in, a house that's stood for over seven decades and has been in my family for four generations. I swear I hear dripping all over the place. Appliances, vents, walls, ceilings, pipes. I go around listening to all these things, and I feel like I'm slowly losing my sanity. I lost some good brain cells in the surgery, but now I feel like I’m losing my whole dang mind. Did the contractor not do his job when he replaced the siding and the roof in the last couple of years? What if there's a leak and I find it ruins my walls? What if there's something wrong in my appliances, they catch fire, and the whole place burns down?

I dwelled in a body for four decades to discover that it had been harboring a malignant brain tumor for as long as maybe two of those decades. Potentially HALF MY LIFE. No symptoms. No warning signs. Then the bottom dropped out and my world erupted. A fully-loaded freight train I never heard, never saw, and never felt coming.

What if there’s something lurking beneath the surface of my house, in its walls, in its roof, subtle symptoms I ignore, and some day I’m going to watch the whole thing come tumbling down all because I just didn’t know what I didn’t know. What if my house has its own figurative tumors? What if things go undiagnosed in my house and the whole thing falls down around me? There are no ERs for houses. There are only fire trucks and fire hydrants, to douse the flames of what's left, just like chemo and radiation are dousing the flames of what's left of my tumor.

I'm having to wrestle all over again what I believe to be true about the sovereignty of God, just like I did before my surgery last April. God already hasn't stopped bad things from happening to me, but what if there's even more around the corner, waiting, lurking? The disparity grows between my reality and my faith. 

I don’t trust God to not let bad things happen to me. 

God, help me to narrow that gap once again. Do what only you can do.

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Health Updates

I ended the pills for cycle number five this week, and it wasn't the abyss that the last cycle was, thank God. I don't know who all was pounding on heaven's door and what you said once you got there, but this round was significantly less severe than the last one. I still fought off some nausea, but no vomiting, no laying on the bathroom floor - none of that misery. I was able to eat like normal and water tasted perfectly fine. I'll see the neuro-onc again the week of January 26 to review this cycle and look ahead to when I'll start number six, which will be the halfway point!

One of my goals has been to get back to the gym. I've been talking with the owner of the gym to see about setting up times to meet with her one-on-one and slooooowly get started on some basics, build back up over time. I have no idea what my limits are any more when it comes to how long I can work out, how many reps I can do, etc. I am starting from ground zero. I keep joking with her that the scene from Apollo 13 is our inspiration. We are going to have to put this thing back together using nothing but that, meaning we are going to have to work at putting my body back together, but there are some things my body just isn't going to be able to do right now and will be eliminated as options until we know better.

The week of February 2 will mark the one-year anniversary since the first seizure, the biopsy, and confirmation of the diagnosis. I'm sure it will be a weighty week, and I have another post coming that will go with that week. Some people have asked how I'm feeling about that anniversary. I'm sure there's going to be a lot of emotions and sensitivity around it, but I feel like the anniversary of the craniotomy in April will be far more emotional because that to me is when the real chaos and the descent into the abyss started. 

I would appreciate your prayers for mental wisdom and stability as I sort through trauma. I'm making connections to a trauma counselor, but nothing firm yet. And prayers for wisdom in what I tangibly need to address in my house and what is just my brain being weird.

Comedy as Redeemed Mourning

Harrison Scott Key said in his wildly hilarious book How to Stay Married: The Most Insane Love Story Ever Told, "So much comedy is a kind of redeemed mourning, turning the dross of pain into gold, just as visiting Disney World HIS BEAUTY and HER BEAST tank tops is a kind of psychosis" (138).

I have felt that sense of comedy as redeemed mourning a lot in the last year. (Can you believe it will be one year already in February since the diagnosis?!) There was a lot of mourning, but there was also a lot of hilarity and ridiculousness, which in some ways felt irreverent at times. I felt as if I had to button it up because I had cancer, and who laughs when you have cancer? Everything just needs to be sad because that is the caricature I had in my head of what a cancer patient should look like. Bald and sad. And a permanent resident living on the bathroom floor.

So I began thinking over the more comical moments I've had here lately. Sort of my own personal version of "You know you have cancer when. . ." sort of list, but really these are the moments when I know I have brain cancer (and when I know I have friends and family who have sorted out when they, too, can safely inject some humor into the situation.) This clearly is not a portrayal of anyone else who has or has had cancer, so don't generalize what I'm saying here.

You Know You Have Brain Cancer When:

• You lose your hair to surgery and then again to radiation (but only half of it!) and then while throwing up from the chemo, think, “Well, at least no one has to be here to hold my hair back.” 
• You update your Memoji to more closely resemble the version of you that wears a beanie hat 24/7 and now needs glasses. 
• You joke with your brother that at least you managed to hit the trash can every time you threw up instead on the floor or on yourself, and he responds in a way that only a brother can with “#winning.” 
• You keep a running list of your medical claims just to see how much your insurance company has been billed, just for kicks. And you do this because you called your insurance company to see if they can provide a master report. No, no, they cannot. Not unless you need it for legal purposes, or some other reason you cannot recall. (And for the record, it's A LOT of money that has been billed to my insurance company. I'm not quite to seven figures, but we're getting there.) 
• Your friend buys you a water bottle decal of a cartoonish looking dumpster on fire with text beneath it that says, “This little light of mine, I’m gonna let it shine.” Which is a very polite way to say “Your life is a dumpster fire, but you’re doing a great job.” 
• You start a playlist in your iTunes that is simply called “The Year of Cancer.” 
• When you’ve been asked for what feels like the 9,000th time what your birthday is for verification purposes, you have fleeting thoughts of giving some alternate date, just to see how they respond.
• You’re like a toddler whose day revolves around nap time. Although, I suppose the statement could move in the geriatric direction just as easily, but let’s move in the toddler direction. 
• Your prayers consist of things like “Dear God, please don’t let me lose my lunch again today,” and your gratitude journal includes things like “Thanks, I didn’t lose my lunch today.” 
• It takes you four months to finally make it to a dinner date with friends after months of scheduling and rescheduling thanks to a body that has long since left you out of the decision-making process.  
• You have a new section in your personal library you mentally call “The Cancer Section.”
• You realize some people dream of sleeping or napping all day, but you dream of staying awake all day.
• You joke with a friend who is a paraplegic who has a shirt that says, “I’m in it for the parking.” So then when you roll up to radiation and slide into the “oncology patient” parking space, you text him a photo and say, “I’m just in it for the parking.” 
• You watch all these pharmaceutical commercials you used to laugh at, wondering why anyone would take them as the guy speed talks his way through all the possible side effects, “including death,” and now you watch them and think, “No judgment here. You go right on and take that med that includes possible nausea, vomiting, skin rashes, hair loss, deafness, blindness, heart attack, paralysis, asthma, kidney disease, heart disease, loss of all limbs, osteoporosis, hemorrhoids, curvature of the spine, stroke, and in rare cases, death.” I see you.
• You know what day it is based on your pill organizer. (But that’s only if you remembered to take your pills when you should. And if you don't do that, well, then you're just up the creek as to what day it is. Except for your phone, which also houses reminders to take your meds, and yet you still forget to take meds.)
• Your friend sends you a candle with a picture of a dog with a cone on his head with text beside it that says, "At least you don't have to wear a cone."
• You keep a daily log of symptoms in a notebook, and since you've given legally strict instructions to two of your friends to burn your real journals with all the true insights of your life when you die, those health logs will be the last documented remains of your life. So, congrats, at least the world will know if you had a bowel movement or not should you meet an abrupt demise while going through cancer treatment. 
• You seriously question the dividing line between aging and brain cancer. It doesn't really matter why you just walked into a room and can't remember what you're doing there. Just make another lap and the answer might come to you. You could use the steps anyway.
• You now understand the value of dry erase boards and dry erase markers more than you ever have before in your life. You have to write down what you need to do ten minutes from now sometimes. You even ask for some sort of shower-version of a dry-erase board for Christmas. Doesn't everyone do their best thinking in the shower? And you can't wait until you get out to write things down. No, that's far too long. You forget what you were thinking about in the amount of time it takes to squeeze shampoo in your palm.
• You think "Well, clearly when the neurosurgeon removed part of my tumor, he also apparently removed the cells that gave me the ability to back into a parking space without looking like some drunk, newly-licensed teen driver just pulled in."

Comedy. It really is a redeemed kind of mourning. So laugh away.

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Health update

My most recent appointment with my neuro-oncologist was last week and we did our usual monthly lab work. My platelets took a major nose dive. The low end of normal is 150 and my platelets were down to 86, which was the lowest they've ever been in this process. We had to put further chemo temporarily on hold to see if the platelets would rebound before we could green light cycle number five. I redid lab work today and the platelets rebounded - just in a week! - to 175, which the highest they've been since July. I'll start the next round of chemo tomorrow night (But I don't take it until the evening, so I'll still be with it during the Buckeye game!) I told one friend, "Welcome to a life where perhaps whiplash is, in fact, the most common side effect."

In conversations with the doctor, we elected to maintain the higher dose of chemo, which is the same dose as last time when I was ultra-miserable for a period of a few days. I'm not a masochist, but I want to see if the same symptoms still play out or if the body adjusts in any way to the higher dose. This higher dose is ultimately the target dose and the highest I would go anyway. If it super sucks again, then we can just drop the dose back down without hampering long-term outcomes. If it does hold true, then by about Wednesday next week, I'll probably be getting reacquainted with the carpet in my bathroom closet again and water will sound absolutely awful to me. Yay for padded carpet!

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