26.

I was 25 and still alive.
As of yesterday, I am now 26 (!!!)

Wow, its now official: I have spent exactly half of my life battling cancer, age 13 being my origin, my first cancer diagnosis. And, come to think of it, back then at 13 years old I only had a 25% chance of survival.

I’m now 26. You do the math. (Or ask my mathematician father)

And yet, despite relapse after relapse after relapse, I’m still here now, at 26. And I can tell you honestly it’s all by God’s immense goodness and graces: the amazing doctors, nurses, and medical team He’s given me, my wonderful family with parents who would drop everything for me, friends whose laughter, comfort and support are deep reflections of His Love, and fellow cancer survivor brothers and sisters who also steady me…you see, it’s all really about relationship as to why I am still here and existing, typing all these things to you.

Age 25 definitely did not go as expected: relapsing again after a year of being done with my last treatments was not part of the plan. I finally felt like I was becoming an adult with a full time job and returning back to my crazy household of roommates. 25 brought sadness with the death of Skylor and uncertainties of trial drugs and treatments and with that days—weeks—of deep angry waves of anxiety, dragging me in hurricane thoughts and worries, throwing me onto my bed for dark periods of time.

Although 25 did not go as I would have expected, I didn’t care about those things at all as I celebrated its end and welcomed 26 into my life last night. 26 brought new experiences already, adventuring to places I had never been to, enjoying free Jeni’s ice cream (who doesn’t like to start a new year like that?!), duck-bowling with old friends and new. My first full day of 26—July 12, 2017—was surrounded by joy. At 26, I don’t feel sick but instead ecstatic joy.

Help me Lord to cling to the joy you give me daily.
Help me at 26 to be marked by this, marking and transcribing the days with gratitude and hope.

lightening strikes.

Hello,
it’s been a while.

I’ve been living, traveling, receiving chemo, reading, getting scans, praying, waiting for scan results, waiting for doctor calls, visiting patients, laughing, resting, praying, crying, resting, fighting, living.

I’ve been writing in my mind, recording the thoughts.
It’s time to take out the files now, both mental and medical.

From my last blog post-prayer of 4.25.2017 —

Help me to enjoy those moments and be there for more of those moments, Father.
Help me to push myself when appropriate to be around those moments, those people, the love that you have given me.
Help me to grateful and see life as living for You, and not a productivity check-list to mark and cross off.
Help me to rest, to rest in You.

And looking back now on these past couple of months, He as definitely helped me to be there in joy, enjoying the small moments of life with others.

Traveling to Tennessee twice now—once in May and once again in June—have been my retreats of joy. In May, sharing a beautiful lake front house with people in my homegroup, living in community in all hours of the night for a week straight, was pure joy. I crashed hard during my naps and at night, the joy resting deeply in my bones. The Lord amazed me with his goodness of sustaining me to have energy to enjoy my friends, the people, to go on a last minute concert hours away, to stay up late into the night, to kayak, to karaoke singing/screaming in our living room at one in the morning…the gift of energy to live, to enjoy life, was a blessing to be grateful for, one that I know I don’t always see as a gift of grace and need to train my eyes to see it more and more.

Return back to chemo life and scans. Check up on scans from last time that had a small seedling sprout of a potential cancer nodule within my lungs and see if it’s grown. Unfortunately, the nodule did as well as germinating a new one, showing us that the chemo-pesticide is no longer working as well as it once was.

Six months of good treatment and here we are again, back trying to decide and calculate new treatment plans and options. The current thought and plan is to do a thoracoscopic surgery, taking a small camera within my chest to help the surgeon remove the nodules and assess what they really are, if they are indeed cancerous. From there, I’ll do some more treatment, which my doctors, family and I are waiting to figure out more there post surgery.

In the meantime, I am chemo-free, which is great in some ways for sure. But there are times when I feel the thunder and lightening pain in my chest, and I am wondering what cancer-storm is going on in there. Lightening-pain strikes, and sometimes the lights go out and the darkness comes, the dark thoughts of worry, concern, anxiety of what happens next. At times I want to quickly grab the candles of hope and light them to help me see what is really true, what the Lord says is true about me and my life. And other times I just want to sit in the darkness and just lay there and sleep or agonize over what might come next.

Please pray for upcoming surgery consultation for this week and for wisdom regarding next steps.

Help me Lord to remember that you are faithful, in the darkness when I can’t really see but can only reach out in hope to touch and feel the security of who You are.

 

 

 

chemo day 7 ate 9, 10 & 11.

It’s been over a month since I have last updated you all (wow!)

So, what all have I been doing?
It honestly feels like I’ve been tethering between living and resting-fatigue, that swinging pendulum that I still quite can’t get figured out. After almost 4 months on this new treatment, this new chemo schedule, you’d think I would get the hang out this now, know when the swings of energy are coming and when the lows are bringing me back to my bed to rest, rest.

After almost 13 years of this on-and-off again cancer and chemo life, you’d think I’d get the hang of this. Yet sometimes, I feel like I’m barely hanging on.

I know, I know. My doctors remind me that the more chemotherapy I get over the years, the more it takes time to recover. My body doesn’t train to get through the chemotherapy, like a marathon runner, but instead it gets more drained rather than trained. You think I would realize and remember this by now that I’m literally letting poison slip into my veins, drugs that label themselves boldly that they are cytotoxic, toxic to life-giving cells. Ha, yes, if you need any definition of poison, that is poison indeed. And yet, even with this knowledge and these facts, I still think I can keep up and “do better than last time.” Its like I am comparing my runner strides after every round, seeing if I can beat my time from last time, but its a guarantee that I can’t. And as my body is getting older plus the amount of poison-chemo it’s had, I’m definitely not set up very well for this marathon once again.

These last few chemo cycle-laps though have added new survivor-runners next to me: Ashleigh and Daniel. Now Monday treatment days have neighboring friends in the hall who are also doing the same chemotherapy as me. And though we definitely don’t wish these new relapses on one another at all, I know I am grateful to have them there next to me, to lay next to Ashleigh in her hospital bed as she shows me videos on her phone and to listen to Daniel talk about his latest projects on cars and motorcycles; our conversations transport us to somewhere else that is far away from the hospital rooms we are currently held hostage in. And we are freely laughing at cancer jokes and discussing and comparing side effects, wondering alongside each other what is going on inside our bodies.

I swear, the laughter and the talks we have, from looking at us on the outside, you would never know that we are “sick,” that we have cancer, but instead we are healthy young adults trying to work and figure out life. And indeed we are trying to figure out life; we just have literal hurdles of cancer relapses to jump over in our life-marathon course, and we have to take some more breaks here and there from time to time in order to rest.

I’ve been resting more these past few weeks, barely making it through a half day at work anymore. The tiredness is unreal. My journal entries of April capture the swinging pendulum of energy-fatigue that my mind and body are forcibly knocked into—

prayer journal entry: april 4 2017

It’s so easy some days to just sleep and read all day. Or watch tv. Or just watch life go by.

I prefer to listen to life. I close my eyes because its too hard at times to keep them open. I am not choosing to be blind, but my ears are interacting with the world for me and my mental dialogue as well. Is that enough?

Is that enough?

It’s not enough after each day when I am aching and wishing that I had done more with my day, chastising myself to do more, why didn’t you do more, you could have been more productive. I know this is not the positive or encouraging mental soundtrack that should I be listening to, and yet it is what I listen to.

I hate looking at time and knowing what time it is. If its too late in the day, I feel lazy. I begin to mentally track all the things I’ve done as well as the omissive things that  have not done. I call myself lazy because I know that I can do more, be more, that I have he capacity for so much life, for so much living and yet I don’t and squander my energy.

 

prayer journal entry: april 7 2017 

I’ve been taking to reading fiction rather than living life. I go to the bookstore or the library at least once a week, collecting stories as if I’m picking wildflowers by the bushel. Look down at my bundle, and I wish I could read-experience them all at once. Going down aisle after aisle, I wish I could magically touch each book binding and be transported somewhere else, somewhere at least with more energy.

I don’t have much energy to life live, so I read. And even then at times I wish I knew Braille so I could touch-read and experience, feel and connect the dots and understand. My eyes these days hate to even stay open, and it seems that they are resorting to depending on my other senses: taste, touch, smell, hearing, dreaming.

My mind dreams so it can live. It dreams of the simple, the everyday: driving my Volvo, going to the library, running errands at Target, cooking new dishes, grocery shopping. My mind dreams of these things and puts me right there in those places and spaces, and its as if I’m living and yet my mind is simply masterful when it comes to the theatre.


I read to take in; I write to give out. I desperately search for the words that I can hold onto, to sustain me and repeat as my mind’s mantra so that I can be free and live. I claw at words; I hold tightly to them, almost to choke them out it seems. There are so many words that I want to desperately hold onto, sentences like a bridge-ladder to help me climb outside of myself, my pit and onto safety-sanity.

I have always worshiped words and their power since my youth. My mother tells me that I’ve always been fascinated by words. She remembers me, young toddler Jenna, my index finger pointing and underlining the rows on rows of words in my small, baby pink bible, desperately wanting to read and understand the words/the Word.

I’ve always had desire for words, the Word , it turns out.

And maybe one day she’ll be reading my words in a book, understanding more of what my mouth can barely say at times because I know of the agony it would cause her.


prayer journal entry: april 11 2017
a meditation on 2 cor 4, on breaking.

I want to be available,
but all I am is availably broken.

And yet, somehow, that is what You want, You desire: brokenness. My energy-gas gage is broken; I can’t fully tell when I have energy compared to when I just need some food or sleep or both or when I just simply need to push myself, my body and not think of its limits, this body fencing me in with its white-bone fence and tendons for wiring.

You can be trapped in your own body. Your own flesh and blood can harden, mummify against your skin, trapping soul and spirit against their will. Is there ever a way out? Only from the outside can you seek refuge and strength, Someone Else who is stronger and greater than you and your weak-ability-spirit within you. Only He can begin to strip and unravel you, let the casing finally breathe. The cracks are coming, are noticeable to all and not just you.

It’s all you really wanted to do anyways—break free from this paper mache mess and handcuffs. They seem so simple and silly and powerless now looking back at the broken paperchains but in the moment they seemed like weights so strong, so dense on your spirit. Its really what you wanted al along—this deeper freedom and yet all you did was lay there—not lay there and ask. All you needed were those 3 letters, that small word—ask—ask in prayer, and freedom could have come so much quickly.

We desperately need help.
We need help asking for help.

Its only until you ask that you finally see that to your core about yourself and you can be amazed by the negative strength on your own stubbornness, strength that weighs you down and makes paper into lead-lies that hold you down


I could keep going with journal entries, but I begin to notice my own pattern of lamenting and need to stop. Because truly, here have been some amazing days of life and energy in between all of those lamenting prayers that I need to remember and be thankful for. From getting to watch and celebrate a dear friend’s wedding, picking up a new hobby of gardening, getting to catch up with an old friend more regularly, working with new students at my job, laughing at my roommates and the silly things they say…there are the simple moments where I do get to enjoy life and my mind and body forget that I am dealing with cancer, that it seems so very distant.

Help me to enjoy those moments and be there for more of those moments, Father.
Help me to push myself when appropriate to be around those moments, those people, the love that you have given me.
Help me to grateful and see life as living for You, and not a productivity check-list to mark and cross off.
Help me to rest, to rest in You.

Thank you friends for always listening to my rantings and ramblings and for praying for me continuously!

yay scans!

I still can’t believe it.

It was a more quiet and soft worry that was buried in my mind yesterday as I waited to hear about scan results. I had to talk myself into getting off the bed, to go into work because I knew it would be better to be preoccupied and, more importantly, around people rather than wait alone around the house for scan news. Being alone would just aide in creating anxious thoughts, I try to remind and persuade myself as I get ready for work.

I busily chat away with co-workers while my phone remains silent, not a part of the conversations but I’m wishing it would interrupt conversation at any moment. It would be a rude interruption that I would gladly accept anytime. But, it remains silent, scan news silent.

It’s 2pm. I’m starting to wonder if my doctors are waiting to call me, and they’re waiting because they are trying to figure out how to word and articulate bad news. That must be why they are taking so long. Flashback to October when I waited all day until the very end of the work day to hear from Nick, and I listened to Nick solemnly struggle to tell me I had relapsed. I could tell it took him all day to work up the motivation, the words to tell me this bad news.

What if it was happening to me again?

This silence, the alone time in the mind fosters anxious thoughts.

It’s 2pm. It’s time for me to start calling and texting the trio who care for me. I text them as a very last result, trying to prompt anything, any response from them. I need to make sure to get a hold of them before the work hours are done. My determination for communication leaves voicemails, text messages, and prayers prompting for answers.

The phone rings.

I try to listen to the tone of her voice to get clues as to my scan results. Is her voice sad? Worried? Concerned?

Listen Jenna, to the words.

The MRI of my cervical spine (neck area) shows the radiation continues to keep the cancer cells back. It’s still working, nothing has changed which is great news since my neck has been the most tender, sore and tense it has ever been. The pain that has continued for over a week had begun to concern me, hands touching my neck, hands questioning this lump or that muscle, is it disguised as cancer under my skin, like an Indian burial mound with much more underneath the earth than it looks like on the surface. This MRI shows stability, and this stability is good news!

The CT of my lungs shows “significant improvement!” Some of the lung nodules that were once there are now gone, and the ones that are still there are now smaller, everything now smaller than a cm.

I can’t believe it.

These have got to be the best scans I’ve ever had, the most dramatic improvement ever, which she confirms over the phone. And I have had a lot of scans in my lifetime.

Significant improvement !!!

Finally, a clear image of what is happening inside of my body. I’ve been feeling the results, of something going on inside of my lungs, of the boxing match between cells and chemo. I’ve felt the pounding and tapping again my ribcage-boxing ring, unsure of who is winning, the pain that comes from victory. Is this feeling more cancer cells growing in strength, or is it chemotherapy striking its opponent down?

These drugs were are “last resort” it seemed from the very beginning, the D-team of our chemotherapy options from past and present. And here they are, the underdog, surprising us all in ways that we will gladly accept. Because in all honesty, my mind in rhythmic mantra has been telling me over and over: you are dying. And now, these scans provide a piece of truth to combat those thoughts: you are living.

These scans reveal the unexpected news that I will gladly and joyfully take!

I think back to all that has happened since my relapse in October, and I can’t help but be warmed by gratitude and praise to the Lord. He’s been there with me as I anxiously endured radiation, during the process of deciding to do a clinical trial, to the glimpse of hope and peace I had as I started the trial to the disappointment of the trial not working, to the start of new treatment and the low point of a new port. He amazingly brought me back to Nationwide Children’s, back to the amazing care by my team, to a plan we all were uncertain in but willing to try. I am so grateful to be back at Children’s and for God to be clearly using their care in my life again in amazing ways, like he always does, working through them.

And I am unsure as to why this amazes me so, shouldn’t I know by now and remember continuously that this is the God who is the Healer of my Soul and Body. I meditate back on all of the wombs of women he healed and restored to bring life, from Sarah to bring forth Isaac to Elizabeth to bear John the Baptist. He is the Healer and bring restoration to them long ago for his purposes and plans, and it brings me assurance and hope that he is bringing healing to me as well for his greater purposes and plans that I do not know of yet.

This is hope. He wants me here for another season it seems, until death does one day take you and me both.

My soul reminds me of a psalm that I clung to often during my last relapse, and I am starting to understand it, believe it and experience it more in deeper ways than I even thought possible from last relapse until now—

psalm 103

Praise the Lord, my soul;
    all my inmost being, praise his holy name.
Praise the Lord, my soul,
    and forget not all his benefits—
who forgives all your sins
    and heals all your diseases,
who redeems your life from the pit
    and crowns you with love and compassion,
who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.

Praise the Lord,
Praise the Lord!

chemo day 4-6, and more

I look back and am amazed at how long it has taken me to come back to this writing space.

From my last entry, I wanted to live those 13 lucky days in-between cancer treatments. And I did by drinking lots of fancy coffee, savoring Jeni’s ice cream with my roommates, getting amazing Dewey’s pizza with Josh on Valentine’s day, grabbing lunch with fellow sister-survivor Ashleigh and, surprise!, Corinne as well. I got to share with the women in my homechurch the deep thoughts that plague my vision of how to live and speak freely and honestly. Overall, I did a lot, and crashed hard in between activities with hour+ naps.

Returning back to treatment after a long break can be hard, feeling like you’re returning back to a completely different life. You finally “caught a break” it seems, and now you’re returning to lower energy, fatigue, not your complete self.

The past 3 weeks of treatment–chemo days 4, 5 and 6–were better than the last chemo trio. One of my favorite nurses and dear friends Jodi administered chemo to me each of those 3 days. The first day, she had heard about how terrible of a time I had with my port being accessed, and she remembered in general how much I hate ports. She prompted for us to pray aloud as she aimed and angled the needle into my port-chest–a direct bull’s eye–and the moment reminded me how much I can pray to God for all these things, even the small, mundane medical things and how he listens and comes through.

Chemo day 4 Holly visited me, and my room had a rotating glass door it seemed, people in and out all day long, connections being made, laughter in and out of the room. Holly spent pretty much the entire day beside me, which I didn’t expect her to at all, and chatted away with me. Her telling stories, asking questions, laughing all transported me to another place, as if we were in her living room, sharing a couch and break-and-bake cookies instead of sitting in the hospital room, eating chocolate chip cookies from the hospital cafeteria that my dad brought up. It’s amazing the medicine of friendship.

Chemo day 5 I slept all day. I didn’t feel well, had been sick the night before, and everyone concerned about if I was in the beginning stages of the flu. No revolving door today of people, talking and laughter, but instead a dark room with washcloths for my head and Mom sitting next to me silently viewing social media on her phone. The blessing of Peg the massage therapist comes in and reminds me of the power of connection and touch for the body.

Chemo day 6 was the quickest chemo day yet, Jodi on top of the doctors and pharmacists to clear me and make me treatment. Dad and I back into our routine that we’ve mastered years ago in past treatments: Dad goes and gets a bagel and Starbucks coffee while I get my port accessed; he calls me before he comes back up to my room to see if I want anything to eat; Dad calculates crossword puzzles next to me and poses poetry, literature and Biblical puzzle clues at me while I read my book; I nap somewhere in between all of it; Dad goes to lunch and calls/brings up food later; I receive chemo and get wheeled out in a wheelchair when done. Chemo morning and afternoon done.

In between all of the chemotherapy days, I’ve been alternating living at my parents and my place. I haven’t been as “out of it” as I was during the last chemotherapy cycle, which is great! I can still at times simply blink and then be passed out for a couple of hours though. I crave and eat a lot of ice cream (it’s as if my appetite has rediscovered Coldstone Creamery Oreo Overload.) My stomach is highly influenced and persuaded by food commercials, including Long John Silver’s which I haven’t eaten in years haha. As I rest, Josh and I obsess over the tv show Man in the High Castle. I pick up a fictional book by one of my favorite authors, Jodi Picoult, who I haven’t read in such a long time or to read even for fun in a long time and read compulsively. I strive to work more, trying to be there and recognize earlier when my body is getting tired and needs to go home and rest. I work with new students who bring me a lot of joy in just connecting with them, helping them, helping others outside of myself to get outside of myself, my thoughts, my circumstances. The girls in my Bible study and I go out for a weekend retreat in a beautiful HGTV-looking home and learn and reflect on prayer. I realize how much I don’t thank God enough for them and their joy late into the night.

Thank you, thank you, for all these joys.
Help me to stop and appreciate them more and more in the midst of my time.


A lot is happening this Wednesday, March 15th.

On Wednesday, Josh and I will celebrate 2 years of dating (it’s been that long!)
On Wednesday, I get my first set of scans, recording the progress of 2 months of chemotherapy I’ve had so far (it’s been that long?!)
On Wednesday, we would have been celebrating Skylor’s 19th birthday (it’s been that long since he’s been gone)

Beware the Ides of March much?

My body is always aware of when scans are upcoming it seems. Perhaps this is why my neck and shoulders have been so tight and tense these days, just tensing and thinking about this day. I swear I feel every small pain of my body. I notice whenever I feel any pain in my lungs, and I wish I could look inside and see what is going on within my rib cage, this war within my body. Is the chemotherapy attacking in that moment, causing pain and injury to cancer cells, is that what I’m feeling? Or am I feeling the cancer army multiplying in size? This seems like such a blind battle within my body that I’m participating in.

It’s these medical snap shots of scans that uncover the reality underneath my skin. I know I have cancer, but I don’t see it. I just see all of the effects around me, my circumstances and life changing, hair loss, loss of energy because of the chemotherapy. Its these images that show deeper, underground roots of reality in black and white truth.

The inward truth can be scary.

Please pray for a calmness of heart and for a body to relax and heal.
Please pray for a mind that trusts and hopes still, no matter the circumstance and images captured.
Please pray for the results of these scans, that the reflect accurately the battle within me, clear images for radiologists and physicians to read and discern the army’s movements.

As always, thank you for your prayer-support, thoughts and well wishes!

chemo days 1-3

It’s been over 2 weeks since my last update. There is a lot that can happen in 2 weeks, in 16 days.

I’ve been meaning to blog and write and everything, but even that can be challenging. How do I even begin to process this all again? Especially when my tendency is to go go go without thinking and just doing. Then it hits me, and I crash and burn.

i. chemo day 1

Two Mondays ago I started a new chemotherapy treatment back at Nationwide Children’s Hospital. New treatment always seems to come in pairs, like fraternal twins, two chemotherapy drugs but with different make up and different names: Abraxane and Gemcitabine. Each new drug I’m introduced to has an alien name, harsh sounding, and my mind just can’t really picture what its all doing.

It is a weird homecoming back to Nationwide Children’s. It’s been over a year since I’ve seen the nurses and the staff, and yet it doesn’t seem and fell like it. And literally everyone comes in and sees me that first, long day back. I see all my old nurses, the art therapist, the psychologist, the social worker, the recreational therapist, the massage therapist, Nick, Stacey. I honestly don’t think there was a moment where my family and I were alone for a minute that day, everyone stopping in on room 25 to see me. And everyone is the same it feels, but they are also different. They are glad to see me, but not for these recurring reasons of drugs and treatment plans. They all apologize that its the chemotherapy drugs that connect us, bridge us together once again, and it is a solemn and silent bridge. I get it. There isn’t much to say but that it sucks, and I know it just pains every member of the staff to even say something consoling or to at least recognize the situation and where we are again, on this bridge of chemotherapy and drugs that will hopefully guide me across to new health and new life.

The first day back at treatment is a long day of course. Nick goes over with me every possible side effect and what to expect of these new drugs, pages upon pages it seems. How could there be so much information on just two drugs? And how it is that these drugs are supposed to help you but they are out to harm you all at the same time?

Truly that first day is like a long day at work, a full time work schedule of 8am-4pm. It takes time to do a physical, check my blood, make the chemotherapy. And afterwards all I want to do is sleep off and on. Days later my body just aches. Some days it feels like Abraxane is taking my joints into his hands and pulling them far apart, and other times it feels like he’s taken a screwdriver and is tightening over and over again each joint, ensuring that they are tightly screwed into place. He is unsatisfied with my body’s dimensions it seems.

ii. chemo day 2

This past Monday, oh geez, what a Monday! The roughest of the days so far physically. I decided that I needed a port in order to receive IV chemotherapy this time around, so I was put on the surgery list. My family and I arrived at 6am that day, and I didn’t get into surgery until 11am because of another urgent surgery and just a chaotic OR scene. Wake up, and continuously just throw up even though there is nothing in my body since I hadn’t eaten since 9pm the night before. Every time I try to lift myself off from the bed, my stomach shifts, and I can’t do anything else but heave nothing or fluid. I haven’t been this weak in so, so long.

The plan was to have surgery that day and then receive chemo through my new port as well. By the time I finally feel ok enough to move from surgery recovery to the Hem/Onc floor, its almost 5pm. Geez! And I am still throwing up, still out of it, but I still want to get these chemo done and over with today. Stacey comes in, ready to fight to convince me to spend the night at the hospital (she knows how much I hate staying) and I just submit, knowing its the best option. This has just been a long day, the longest day it feels. And all I want to do is just sleep and eat but I feel like I can’t do either.

I want to look to Stacey and Paula and Nick and Dad and Josh and have them do it all for me, but they can’t. Something in me has a to get it together and get better. All they can do is help and comfort.

Josh sits next to me on my hospital bed periodically and just mostly looks at me. He is such a quiet guy, and these are the times where I am just trying to read his eyes. He ends up saying a lot without saying much, and sometimes I just need that presence of someone and not necessarily words that are trying to climb the difficult mountain of consolation and comforting words. Sometimes there are just no words but presence. That presence can also bring peace.

That surgery Monday day, my only meal was a dinner of a bag of goldfish crackers, haha. I’m even amazed that I keep those down, finally consuming and keeping nourishment (though little) within me by 8pm that night.

Even though I am a cancer patient, I am hardly ever on this 12th floor, the Hem/Onc inpatient unit. To sleep with an IV in, machines peeping, various nurses doctors in and out of my room is something I haven’t had to do a whole lot since I was 13 years old. And this evening I am remembering briefly those moments of my first diagnosis, of the inpatient hospital stays and the completely different part of the hospital that those stays were located on, and of my first port.

The next morning when I am released, Dad is rolling me in a wheelchair and a nurse runs out to see me that I literally haven’t seen in 12 years. She was a consistent caregiver of mine when I was 13, and I am amazed that she recognizes me and I’m sure she is more amazed that I remember her name. I wonder if seeing me brings her hope or discouragement. Hope because I am still here, 12 years later. Discouragement, because I am still here, back at this hospital, 12 years later.

I hope its hope that she saw 12 years later.
I hope she has other patients that aren’t back here 12 years later but living out there.

iii.

I cried a lot last week.

On the way out the door from my hospital stay, I cried for the first time in a long time in front of Paula and Stacey. That Monday of waiting/surgery/spend the night at the hospital was just too much; who could have expected and anticipated quite a start to the week?

I cried because I’m realizing I don’t know where I can find the strength again to do all of this, this chemo life.

And that’s a scary thing when you can’t find that strength, that energy, that hope, that faith within you that comes from Outside Of You.

The realities of cancer and the cancer world are hitting me more than ever:
I had a young friend at 16 pass away because of his cancer.
Many of my young adult friends are relapsing around me, as if cancer is a weed that easily spreads from one body to another.
I go on social media, and I see more friends’ family members being newly diagnosed.

And here’s me, fourth time undergoing this all, and having a harder time figuring out medicine and answers and mostly drive, motivation, hope.

iv.

what is hope?

hope is an empty glass fish bowl that you hold onto when you are young, the bowl larger than you even. It still feels firm, even though invisible/visible, you’re still able to see through the glass. This glass is solid, thick. When you put it on the shelf, from a distance you may or may not see the glass bowl depending on your angle and viewpoint.

That is what hope is: sometimes you see it, and sometimes you don’t depending on your angle.

As you get older, you start to put things in your glass hope-chest bowl. What college you want to go to. What your future job will be like. Who you’re going to marry. What might it be like to be a mama someday. You carry these things in your heart as you hope for them, expect them eagerly throughout life. This glass bowl is getting heavy and full and yet its density makes you all the more look into the bowl of hope for more, more life.

I feel like these days though I might just lose my grip on hope, the glass bowl slowly falling, slowly gliding against gravity and fingertips, and breaking all around me in more pieces than I could count.

I’ve been really careful not to drop it for quite some time now, but it is getting heavier on me as the chemo flows into me and my energy flows out.

To be honest, it did drop one day. Hope now has a place where its once solid nature is now broken, a crack and its so visible at all the angles. Who can fix this crack? Who can fix hope?

There is only one person I know who can, and yet my glass bowl seems even too fragile for me to give over to Him. I’m still a little child, and this glass bowl is larger than me and hard for me to hold, and yet I still want to try to on my own. I’m stubborn. I want to look at the crack and cry instead of the alternative.

Help me to hope still Jesus.

v. chemo day 3 

Yesterday, I had my last chemotherapy of this cycle.

Like the moon, I live my life in cycles of waxing and waning, chemo cycles draining and waning me of whole self after each treatment. (When do I ever get full again? I’m unsure these days.) The waning-recovery seems to be growing in time and yet I am still sleepy. My body things it’s nighttime when its daytime and wants to rest, but when the night comes I lay awake in the bright moonlight, thinking, dreaming, anxiously living inside my thoughts instead of living life outside of them.

Like the moon, I am in cycle. Receive chemotherapy on days 1, 8 and 15—rest in the darkness of the new moon on the last Monday of the cycle and begin again all the following week.

It wakes the moon 29.5 days for its cycle of waning and waning. I take 28 days to receive 3 rounds of chemotherapy, one round per Monday, and the last 4th Monday off.

Including today, I have the next 13 days off from chemotherapy.

I can honestly tell you, I need this time physically, mentally, emotionally. It was a lot harder to change chemotherapy plans than I thought it would be, harder to adjust to a new schedule and new side effects and trying to figure out new work/life schedule and coming off the disappointment still of a failed clinical trial.

In retrospect, that is a lot of change. No wonder my mind is going anxiously and living more at night and simply zoning out during the day.

During these 13 days, I hope to rest more at night and enjoy the day. I want to drink fancy coffee and work quietly on my laptop in hipster coffee shops around Columbus. I want to work more with my writing. I want to laugh late into the night with my roommates. I want to figure out a work schedule that works with my body and work ethic. I want to try more recipes and creatively cook. I want to get my body back into doing yoga more consistently. I want read without confusion and the Word calm me. I want my prayers to be more than just groanings but a real conversation, where I ask questions and listen for answers.

Simply, during these 13 lucky days, I want to live.

 

 

 

change of plans.

Cancer can change quickly. I’m learning that treatments can change too.

From trial back to method.
From Cincinnati back to Columbus.

Receiving the phone call of a relapse can rock you.
Receiving the phone call that the treatment is not working can just crush you.

The first, the relapse phone calls, I’ve done that over and over again. I know how to to respond, what to say on the phone. I know how to snap back in the moment from where you want to emotionally real in the tunnel tornado alongside Dorothy to getting your mind and feet back on the ground to ask questions for directions and a path.

The second of phone calls…all I can say is wow while I’m sitting across Dad at Dewey’s Pizza and on the phone with Dr. P. He informs me that tomorrow they will take me off the clinical trial study because the nodules in my lungs have grown. He said he wanted to call the evening before so that I wouldn’t be shocked tomorrow when they don’t give me the new set of chemo pills and patient diary to fill out, which I appreciate, yes, but everything in me just wants to pick up and leave Cincinnati right now, pick up our belongings from the hotel and head home, head directly to Nationwide Children’s even though no one and no answers will be there by the time we got there late into the evening.

And at the same time, it was like I knew before that phone call that called this whole thing off. Pain was calling me earlier that weekend. Nerves ringing and pain receptors answering. I haven’t felt much pain at all since after the start of the clinical trial for weeks, until the weekend before I headed back down to Cincy for scans.

Your body just knows, and it tries to warn you and tell you. I’m sure there are other cancer patients that must feel similarly to me, that there is this ache that signals you there is something wrong again even when you want to desperately dismiss it. Rewind back to October, before I knew of my relapse and were getting scans to just figure out what was happening with my left numb hand, I just knew. I cried in the parking lot at work knowing days beforehand that cancer was returning, and I didn’t even want to go to the scans to verify it and see. While everyone else was like there is probably nothing wrong, you might have just done something, like a sprain. I don’t do much physical activity, but I do know when the cellular activity is rapidly reactivating.

I mean, this is probably why I panicked as I was officially trying to decide whether or not to be a part of the clinical trial or not. I wonder if my body knew somewhere within me that it wouldn’t work, or was I just being pessimistic and thinking it wouldn’t work so it didn’t?

I keep these thoughts to myself, and still Dad and Dr. P remind me that well we would have never known if this wouldn’t have worked or not if you hadn’t tried it. I know its true, scientific and math men and method men speaking, but I never did well in the sciences in school. And not that I don’t regret doing the trial, but I just wish I hadn’t lost all of this time. It took so much time to figure out if I could get into the trial, to start the trial, to wait and see if this trial is working…time time time. And cancer cells don’t just seem to grow from my flesh’s provisions but also from the provision of time. Dad, the mathematical man and retried middle school teacher, calculates that on average my cancerous nodules are growing almost a mm per week. Cancer grows on time, in time.

So, what do you do?
What do you do?

The same day I returned from Cincinnati and go through the formalities of getting off the study, I come back home to Columbus that evening with a coffee hour to attend. Nationwide Children’s and OSU James have partnered together to host a coffee hour once a month for young adult cancer survivors, and today just happens to be that day. There are only two other survivors this time who come, and it is as if they are bookending my life. There’s Ashleigh, who has been doing the IV chemo I am about to start, and then there’s Jared, who has been cancer free for years and recently engaged. I am literally in-between their cancer worlds it feels. I was just cancer free a few months ago, starting also young adult life like Jared, and now I am Ashleigh again starting treatment once more. They are living and moving cancer mirrors for me, and its not as if I envy one life over another but it just amazes me how quickly we can get back into treatment work and yet how much more time and work it takes to get back to “normal life.”

Where will I be God in the next few months, in the next year?

All I know is where I will be tomorrow, back at the hospital, back getting that IV chemo dosage, back to ports and IV poles and needles. And I will be back at my hospital home instead of Cincinnati.

And I have no idea why my time with Cincinnati was so brief. Why was there any time spend there God? I can’t even really see it or understand it. And will I ever get to understand here in this life? Help me see why you brought me back here.

Pray for me as the needle goes through and the chemo-poison begins again tomorrow. Pray for my body to respond and heal, as well as my mind.
Pray that joy and understanding can come from this, and that joy can still be found even if I don’t ever get to understand why.