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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