A Letter to my Husband

 

My Love,

The lights were always dim. My IV pole machine lit a tiny sliver of green on the waxed fourth floor as you lifted your contorted body from the visitor’s chair at 3 AM. Leaving sleep in your eyes, you unplugged my machine, tied my blue hospital gown, lifted me out of the bed, stopped when it hurt me, and took me to a most vulnerable place with a tender hand.

If your chair was cold, I knew you were two floors down in the NICU cradling your only child – the only one I’d ever be able to give you – making sure his IV and nutrition lines were also connected and beeping lively and skipping at the same beat as mine. You never complained when I cried in pain and loss because I was too weak to see Shiloh – but instead slipped on crumpled jeans and hospital sock from the cubby you’ve made your home in the stagnant room – and wheeled me down to see him. You made sure to tell all the nurses that Shiloh’s mommy had come.

You saved his first bath for me and took the burden of the first embrace he would feel in this life because your new bride’s body was trying to leave the world.

When we went home, you placed our newborn next to my slumbering body – so he would still know who his mother was and memorize my smell. I did not have the strength to hold him. As my mother slept in the other room – exhausted from the burden of seeing her only daughter struggle to hold her only son – you squeaked dry erase marker on a makeshift wall chart and nudged me awake with pills and cup in hand for my timed relief.

I took the pills and placed the cup next to my bedside pharmacy. I heard more scribbles and plastic then saw you come from the pale light of the bathroom to drain the bulb of fluid still hanging from a tube in my stomach – but not a breath before making sure our little one was still puzzled into my side against his healing mother’s flesh.

You prepped a bottle of nourishment my cancer infused body could not give.

Our two naked scalps touched as you chose to take the hair with me. I stole your Fight Club shirt, but I know you really wanted me to wear it. You placed a flat hand on my back while I gripped the cold floor while chemo thrashed my bloodstream.

In the middle of the night as Shiloh slept in his crib, you ran fingers over the tiny resilient hair sprouts as if the long dark locks were never there and this grotesque state was always what you saw as beautiful.

When chemo stopped and the scans were clear, you helped drag my body back to life and shut the door and hit the lights when I tried to recover. My muscles screamed from moving when I went back to the classroom, but you muffled them with melodies of affirmation.

When I said I wanted to start my doctorate, you said – “Okay”.

When I said I changed my mind, you said – “Okay”.

When I said I wanted to take a graduate writing class, you said – “Do it”.

When I was bald, you said – “You’re beautiful”.

When I dyed my hair purple and pierced my nose, you said – “This is who you’ve always been”.

My Love, you never asked for this. We didn’t know how real “to death do us part” or “in sickness and in health” would try to touch us. You didn’t know your bride on a snow-capped January wedding would try to leave this world – or rather – that a beast called Cancer would try to steal me away. You didn’t know you would be both spouse and nurse. You didn’t know that Cancer’s whispers would sneak in at twilight threatening to take me again.

But you’re here.

Thank you My Love

Reviving Passions – Roads Not Taken

I jotted the list down, tapping into a self I hadn’t seen in a while. Actually, I greeted my different selves, parts of me that were buried under time and responsibility – life changes.

The journal activity was to write about the roads in our life, the passions we once nurtured and explored – the roads we had not taken. It released something in me – and I waved “Hello” to teenage me.

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Life is short. It seems like a cliche’ idiom until you are faced with the reality of it. I’m trying to do things for love instead of accomplishment – which is hard for me. I considered doing a second master’s degree in English to be a professor, but it would induce more stress than fulfillment.

I used to paint and draw – and wished I could do it in college – but it doesn’t make money. In the 12th grade, I painted floating pumpkins in acrylic but received a B because I didn’t make it a “Thanksgiving” themed portrait – but I loved it! My friend Kerry sent me a whole kit of drawing and watercolor pallets to remind myself how much I love it.

Watching Korean Dramas is a part of my life. I have a Drama Fever Premium account so there are no commercials, but I would love to be proficient in reading Korean novels and history – that half of me that I often neglect. It keeps me grounded in an American dominant culture. I don’t want to lose that part of myself or fail to pass it down to Shiloh.

In the second grade, I begged my mother to play piano – and in the 3rd grade I begged her to stop playing especially after I smashed my finger in the door with a friend playing hide-n-go-seek when I supposed to be practicing. I’ve dabbled in it – but never fully played. The same is for the two dust covered guitars in our apartment. There was always something “more-important” to do – but I firmly believe that we make time for the things that are important to us.

I have no clue where my Taekwondo black belt is – I know it’s somewhere wasting away. I cannot even remember the black belt form. I tried again in college but did not have the time or money to continue. It’s been over 10 years, and I’m not strong enough today – but I want to go back. I imagine myself training along side Shiloh when he’s a toddler. My black belt swinging along side kicks to his white belt.

There are a lot of other paths I did not take – and I’m sad it took cancer threatening my life to remind myself of what I love and who I am. In high school, I was not very popular. In fact, I was the student who read manga under the table and wanted to wear black daily. In college, I tried to reinvent myself. I left my hair grow out without hair dye and tried to look different – the “model”. I tried to impress my parents, in-laws, employers, and new friends – but something was lost in this new me.

Two months ago I pierced my nose, like I’ve always wanted – I dyed my hair deep purple two days ago for a change, and I’m exploring all these other selves I left behind in the dust.

They are still me – and I am still them – and we must resolve to live in one body.

I don’t know if this is a self-exploration phase post cancer-life-scare – or if I’m simply – finally – doing exactly what I’ve always wanted to do with the realization that I need to start living my own life free of expectations – free of cancer – or just free.

Now I Can

I reached down and picked up Shiloh from his crib. We lowered it since his rolling and kicking made us nervous he would escape the wooden bars, and I was concerned that it would be difficult to pick him up and lay him down. He squealed and proudly showed his two crooked sprouting top teeth and nuzzled into my neck. It wasn’t until I got to the living room that I realized it wasn’t painful for my joints to hold him. I wasn’t out of breath or cold sweating – I wasn’t immediately looking for reprieve from a chair close-by – I was just enjoying him. It’s made me realize how far I’ve come since chemotherapy a few months ago.

Among the things I am now able to enjoy to the fullest:

  • holding my son, Shiloh
  • standing during the entire worship music set at church with our little family, my brother, and his friend
  • strolling around the mall with a Starbucks iced caramel macchiato in one hand and a stroller in the other – I love Sunday after church errands and shopping
  • finding a pair of awesome sunglasses for $5.00 at Ross and my UV umbrella in the car for the heat
  • walking to my summer class in the heat with a smile on my face
  • getting things ready for my classroom for next month when school starts again
  • dancing with my husband while Shiloh naps, waltzing around blankies and rainbow colored plastic toys
  • living

I could choose to complain, it’s quite easy to do, but I choose to be grateful.

Today, my choice is happiness.

Stronger by Now

I thought I’d be stronger by now.

When I was sitting in a hospital bed in the infusion clinic, my skin pale and puffed with Taxol, Cisplatin, and Carboplatin, I looked forward to warm weather. Cancer tried to take me as the weather grew cold, and I knew my horizon was among the budding flowers and blazing sun to come. I yearned to be unplugged and away from the snow blanketed streets and medical buildings.

It’s been in the 90s in Virginia for the past week. The sweat slaps my shirt against my body and my shoes skip across the broiling gravel sidewalks. Most days, I still have to take four hour naps – which my oncologist says is normal. I’m still popping pills to feel “normal” – though I don’t even know what that word means anymore. My wrists click painfully as I type as I wait for the Gabapentin to kick in today.

It’s easy to slump into depression. It’s been lurking in the shadows the last few days trying to suck me back into a white hospital bed and hook me up to IV lines. I won’t lie – I’ve been jealous of flowing locks and curled pieces of hair on the side of bathtubs. I see people jogging when I know just a walk takes my air. I need something.

I am goal motivated. In the deep of winter, my brother asked me what I wanted to do after chemo – I said go to the beach and go back to work. I’ve done both. Now, I’m in this odd recovery period where I’m stronger than I was but weaker than I want to be. My mind is sharp again, not fogged by coursing medicine, but my body is slow. I need a body goal.

I’ve thought about taking those free exercise classes for cancer patients. I’ve signed up for them but have never gone. I should probably start there, but I think eventually I’d like to train for Taekwondo again. I have my black belt, and I know it would be crazy to step into a gym right now – but I want to make it my goal. I want to show myself that I can rise out of the desolation of cancer with flying fists. I am not there yet – but I will be – one step at a time.

Live on, hats off

A Good friend’s blog

Finding ME in IBD

We have the opportunity to wear many hats throughout our lives. When we put those hats on we become an other version of ourselves. Still completely us, but in various forms.

I have a Teacher and Student hat. A Sister, Daughter, Girlfriend, and Friend hat. An Artist, Hiker, Musician, Teammate and Traveler hat. I’m still exploring and still collecting. All these hats and more have logos and different colors, shapes, and sizes. All beautiful. They each bring out something unique while allowing me to love and be loved; to explore and to create.

I also have an Ulcerative Colitis Patient hat.

My UCP hat ( or sombrero at times) hasn’t always felt like it’s been a great accessory to what I’d prefer to wear. Actually, I’ve never felt it’s gone with any outfit. From my elementary school overalls to my professional educator attire, it just does not go. (IT doesn’t…

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Running Downhill

It’s a Monday, and I’m tired but here. I’m sitting in a summer writing class for teachers (Northern Virginia Writing Project) sipping on my coffee that is losing its heat. Everyone in here is doing their Morning Pages. I keep thinking back to the question one of my classmates, Kelly, asked me on the first day. Will being a cancer survivor always be how I identify myself? I thought about that as I trotted across GMU’s campus this morning with a V-neck shirt exposing my bruised chest port site from Friday’s port flush.

It’s the question that demands a response in the middle of the night when I can’t sleep because of morphine.

I don’t know.

I’m not at always – I’m just at right now.

I finally don’t look like I’ve suffered, but I have a fear of crashing. I’m not as strong as I thought I’d be at this point in my recovery. I wanted to be stronger.

Kelly also asked me why I’m here – doing a writing class instead of using the whole summer to relax and heal. My mother wonders the same thing. The truth is – I need to feel like I’m going somewhere. The walls of our apartment still remind me of struggling to stand and cold bathroom floors. While it is our first home after getting married and starting a family, it was still my prison for six months.

I’m like a kid running down the hill too fast, desperately hoping my legs will support the weight of my drive and excitement to be able to go back out into the world. I’m hoping I can get to the end of the road without lodging gravel into my elbows and knees.

To think about the word “end” – even as I type it still makes the butterflies in my stomach lie down and stay still – holding their flutters until its safe.

I have to stop thinking cancer is lurking in the shadows.

Friday at 11:30 I got my port flushed – holding Shiloh’s tiny hand – as the nurse disconnected the needle from my chest where my heart still beats.

Communal Coffee

For the summer, it’s set to 7:15AM though I know I won’t drag my warm body out of the soft pastel blue blanket we got as a wedding present until 8:00AM. The tart swirl of the organic French roast coffee from Trader Joe’s finds me and wills I make myself presentable for the day. After I look decent enough to avoid people asking if I’m sick or tired, as many have asked if I forget to put on my face, or when I was bald, I check on my slumbering son and saunter toward the machine.

As I fill my porcelain maroon mug, clinking the rim with the glass carafe, my gaze wanders to our Keurig machine. She must wonder why I have neglected placing plastic cups in her bay and brewing a single 8 ounce cup. I walk past her convenience and continue the day.

I admit – I loved the convenience of the Keurig. I loved how I could choose any k-cup to brew without giving thought to anyone else. There was more choice and little consequence to my 8 ounce cup of Joe. I had no one else to consider, but in many ways the singular cup was very lonely and manufactured. There is something lost.

A full carafe in the traditional coffee maker, however, is communal. I consider how much to make for myself and others. In today’s microwave minded drudgery, grinding the beans at the store and dripping hot water through the hand placed filter requires me to stop.

Many would say they simply do not have time to do it. Wrong. We all have the same amount of time during the day, but we choose to use it differently. We make time for the things important to us. Choosing to brew coffee in a glass twelve cup pot, for me, is an exercise in being other-minded and enjoying the process.

 

 

Staying the Course

This was the moment. My feet dug into the Atlantic sand among the infant clams burying their bodies back under the protection of the waves. An 80 degree breeze hoisted my four dollar kite into the air and momentarily eclipsed the sun as its shadow danced on rainbow canopies and sun kissed bodies. I finally made it to the beach.

In December, when the wind froze and blistered our faces, I laid in my bed with a cat curled around my swollen thigh. The bruises from surgery were faded fingerprints on my neck and arms and the room smelled like rubbing alcohol and gauze. Injection sites polka dotted purple blotches on my thighs and a cocktail of chemo crashed in my bloodstream.

I texted my youngest brother to keep him updated and in my weak moment, told him how hard all of this was as a stray tear tumbled down the curves of my face and onto fluid stained sheets. I was finding it hard to keep counting the days until the Spring when all the treatment would be over.

“You have to look forward to something,” he texted, “What do you want to do after chemo?”

“Go to the beach,” I replied.

I watched my kite dance in the air currents above the sea as the salt water splashed up my legs. As I turned to the waves, fear, once again, tried to rip me from my happiness.

What if they don’t take out my last chemo chest port in September? What if I relapse and this is the moment people will always remember me? What if this is my last happy moment? 

As the ocean undulated, back and forth, and my kite still floated freely, I jerked myself back. I can’t do this. I looked toward my husband playing with our family on the beach, and our beautiful son sitting in his tita’s lap under a shaded blue umbrella.

I must be strong. I must have faith. I must survive.

I know I’m not as healthy as I want to be right now – but I’m trying my best. Some days I still have to lie down for four hours while someone else holds my precious son. Some days I still have to take morphine to get through the pain in the night. Some days I will feel so down that I will need someone to still pick me up out of the mire and muck of depression, but I will keep looking forward.

I have to remember that the scars on my chest, stomach, and heart are not signs of a sad story but of a continual survival.

God, help me stay the course.

Psalm 118:17 –  “I will not die but live, and will proclaim what the LORD has done.”

 

Grace

A student stood before me – his hand gripping his backpack on one shoulder and all his hope of graduating on the other. I was typing in numbers on my school issued laptop which would determine if his final exam would get him to the coveted 60% to pass – and of course graduate:to walk the stage in a couple of days proudly waving to his parents and family and strangers stacked more than 10 rows high in the stands.

“It’s a 59,” I said, “but I’m going to bump you up to the 60 so you can graduate”. His face radiated with a smile with lines curling up to his eyes.

Before he could rejoice too much, as he tried to thank me, I had to give him my speech, “Wait. I need you to listen and understand. You didn’t deserve to pass. You deserve the 59 – but what I’m going to give you is what’s called grace. I’m giving you something you may not deserve but something I want to give you. Justice is something you’ll get a lot of from the real world. I need you to remember this moment. Okay?”

He happily thanked me and strut proudly across the stage days later – his diploma in hand and the gown waving high school goodbye behind him.

I know all about justice. I’m a high school teacher so, of course, I’ve had moments where I’ve been so frustrated with a student and wanted to give them the grade they deserved; however, with my seniors, I’m not willing to take on the responsibility of “justice” when one point in one class could negatively change the trajectory of a young person’s life. This type of grace – which I gave to this student – would boomerang back to me after the graduation.

I hit Spider-man. Or maybe it’s better to say I lightly grazed him and took his paint with me. After the high school graduation, our little family went to my husband’s company party in Maryland. We chatted with his co-workers, stuffed our faces with free barbecue, and flicked ants off of our mat onto the grass, as Shiloh giggled in the sun. Kevin insisted on driving but I, like usual, used the excuse that we were driving my new SUV and wanted to take the wheel. As I backed out of the the white lines, I felt a tap and we jerked.

Crap. I hit the ice cream truck – it had spray painted pictures of cartoon characters on every surface. That one.

I pulled back into the space and kept thinking about how I was going to explain the accident to USAA and whether or not our insurance would go up and how much. From behind the truck came a tanned skinned man asking if we were all okay. To my right, a livid woman came and began going on a tirade to the other people behind the truck about what I had done and began taking pictures of the accident. The scratch was as big as my hand on both vehicles.

None of us were hurt and the guy checked to see if I had a backup camera, which I did, and told me next time to look at it better. The woman fumed and continued to speak angrily to the people behind the truck – but the older man simply asked if I wanted to report the accident. I told him if he needed me to report it then I had my insurance information.

Then he showed me grace. He said as long as no one was hurt then we didn’t need to report it – and he let us drive off with some of Spider-man, red and blue, etched into the left side of my bumper.

As much as I was remorseful about the incident, for days it made me think about not only my student but about Christ. The woman demanded I get what I deserve because it was my fault. She wanted justice for the situation. She shrieked to others how terrible I was and that I should pay for it.

The man, on the other hand, was more interested in not only everyone’s safety, but gave good advice about how I should use it as a learning experience. He acknowledged what I did was wrong – but instead of giving me what I deserved, he gave me what I didn’t deserve – GRACE.

I received two things that day. One, because I sowed compassion to a student, I reaped compassion by that man. Two, God showed me how in an everyday situation, we can choose to be Christ-like.

Nightmare

I had a nightmare yesterday. Well, I guess you could call it more of a day-mare since it was during my nap after work. I climbed into bed with my Little Man; his body faced toward me as we dozed off.

In my dream, I was with a good friend and one other woman. Both were chatting about how much of a gift it is to nurse their children and how tragic it is for women who choose not to do so. I listened and watched as they discussed clothing options with easy tank strap clasps and holding positions for the best flow. The conversation wretched my heart, and I silently walked away and wandered around with all the thoughts I’d shoved down into my heart when I heard I had cancer in the ICU. As I wandered in my dream, I hoped and prayed to be found by my friend – for someone to find me and ask why I was so upset.

She found me. I could see every dive and curve of her face as she asked what was wrong. My dream-self cried the tears I did not and could not. I told her how crushed I was that I couldn’t even try to nourish my son after surgery – and that I was frightened by what my body could produce: cancer. I described sitting in the hospital bed with stitches, tubes, and a hospital gown stained with milk that would soon be laced with chemotherapy drugs and poisonous for my child. I cried for my loss. She embraced me softly, as she would in real life, and told me she didn’t know I felt that way – but then again neither did I.

I woke up to see my son and husband (who snuck in after he came back from work) next to me – and fully aware I had a nightmare. Yes, those were feelings I genuinely had and only casually thought about – but they were always overshadowed by the gratefulness I had for the blessing of both Shiloh’s life and mine. The last few days have been days where I’ve connected with strong women of faith and become part of a new community of women and also days where God was really working a heart in me to dive into his Word and to love people around me.

Why was I having a nightmare about something I only occasionally think about, something for which I’ve already been given peace, and when I truly felt the Lord working in my life to become a stronger Christian wife and mother?

I reached into my Toolbox:

10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.” John 10:10 (NIV)

That was it! The Enemy was trying to steal my joy, my gratefulness, my peace, and my spiritual progress at the height of my growth to pulling me down to where I used to be.

I will not let this deter me.

I will dive deeper into the Word.

I will love people with a Christ-like ferocity.

I will become stronger.

 

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