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. 

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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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