Surviving the Storm: Everything You Didn’t Want to Know About Chemo

chemoI forgot how ugly chemo can get.

Over the last six years, while my son stayed cancer-free, I pushed to the side the ugliness of our first battle with leukemia. Kind of like I shoved away the pain of childbirth after he was born.

If I’d remembered my first experience with labor, Kyle would’ve been an only child. If I’d remembered our first ride with cancer, I’d have locked him up in a magic bubble where cancer could never find him.

The further Kyle gets into his current treatment, the faster the horrors of chemo come back and suddenly I’m reliving every moment of those rough years in very gritty detail.

I watched the premiere of a TV show a few weeks ago. One of the main characters had leukemia. This girl had shampoo-commercial hair, color in her cheeks and lips, and she snuck out of the cancer ward for an evening to walk around the town.

Sorry, but no.

kyle cancer before and after

When it comes to the down and dirty of chemo, most movies and books lie. They paint a picture of bouts of nausea, premature balding, maybe a little fatigue, a little paleness. They show enough to squeeze your heart, make you feel sorry for the character, and get engrossed in the plot.

And then they stop—before the picture gets too ugly.

Because, really, who wants to watch ugly? And chemo is the ugliest thing I’ve ever witnessed. It’s also something most people don’t understand. Like childbirth. If you haven’t experienced the pain, you can’t really explain it to someone else.

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The whole point of chemo is to destroy the cells that cause disease. Because leukemia is blood cancer, those cells live everywhere. We can’t target a tumor. We have to target the whole body. And the drugs don’t know the difference between good cells and bad cells, so like a machine gun, they destroy everything.

Chemo takes Kyle to the brink of death, pulls him back, and then slams him to the ground all over again. Feeling nauseous, losing your hair, being tired and pasty? Those are the easy issues.

Chemo Day

Without white blood cells, Kyle can’t fight infections. A fever doesn’t require a nap and a few Tylenol. It’s a run to the ER for I.V. antibiotics and a possible hospital admission that can last weeks. Worse, he doesn’t usually pick up someone else’s germs; instead his own body overproduces normal bacteria. Staying isolated, washing our hands, using a mask—none of that matters when his body attacks itself.

Too few red blood cells equal low hemoglobin that steals Kyle’s oxygen and iron. Like a congestive heart patient, he 20141013_104939shuffles ten feet before he has to stop and catch his breath. Stairs are a daily challenge, sometimes one not worth conquering. He isn’t just white, he’s vampire-pale with zero color in his face, lips, or lower eyelids. A low-hemoglobin headache can feel like a week-long migraine.

Too few platelets don’t let him clot. A nosebleed isn’t just a nosebleed. It’s an order for a platelet transfusion. A fall or a bruise can cause internal bleeding. He’s not even allowed to floss his teeth because there’s a chance his gums won’t stop bleeding or he’ll get an infection.

Treatment for leukemia is comprehensive and body-system wide. Each drug—whether it’s given orally, by IV drip, or through a spinal tap—comes with its own special set of side-effects.

High-dose steroids suppress his immune system to keep the cancer from growing. They also change his physical appearance, make him feel bloated, and give him severe, long-term insomnia. He shakes like a recovering alcoholic, his cognitive skills are foggy, and he’s moodier than a pre-teen girl. Steroids destroy his taste buds and screw with his intestinal system, so eating becomes a carefully navigated adventure.

One drug messes with his feet and the way he walks. Another drug paints his body in a rash and dots his mouth and throat with sores that make it hard to eat and swallow.

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Between Kyle’s first fight with leukemia and his current battle, he’s experienced a grand mal seizure, been intubated in the ICU, had two almost fatal allergic reactions, almost died of sepsis, spent twenty-seven days on hospital isolation, fought an eight-month staph infection in one lung and a fungal infection in the other, and struggled through two psychotic episodes.

Those are just the major reactions. There’s smaller fall-out every day. Stupid things, like infected ingrown toenails that almost put him in the hospital.

Chemo is ugly.

cancer collage

I asked one of Kyle’s doctors why they use so many different drugs to fight leukemia. The answer was two-fold.

One, because each drug infiltrates a different body system to kill the leukemia cells that hide there and two, because each drug destroys a different body system and they can’t use drugs that target the same area without totally annihilating Kyle’s insides.

Chemo is a game of kill-and-catch up. We’re constantly fighting collateral damage in a war we’re not even sure we’re going to win. And when this two-year battle ends, we aren’t done. That’s when we try to counteract the damage done to his body. What’s permanent? What’s not? What’s debilitating? What can be overcome?

As a cancer survivor, Kyle will have to be vigilant the rest of his life. He’s at risk for secondary cancers, heart problems, kidney shut-down, liver damage, hormone deficiencies, sterility, stroke, glaucoma, learning disabilities, depression, anxiety, post-traumatic stress, and the list goes on.

Leukemia is a never-ending ocean with no life raft. Some days we tread water and it’s enough to breathe. Other days we drown. Sometimes the fight becomes overwhelming. Our family is tested. Our faith is tested.

There are hours and days and weeks where I sit in a pit of darkness and trust that God is somehow still here.

I cling to His words.

“Have I not commanded you? Be strong and courageous.

Do not be afraid; do not be discouraged,

for the Lord your God will be with you wherever you go”

(Joshua 1:9 NIV).

 

I cling to His promise.

“My grace is sufficient for you,

for my power is made perfect in weakness”

(2 Corinthians 12:9).

 

And I am weak. All the time. But I believe God has a plan for Kyle and for me. Maybe like with childbirth, there are experiences out there we need to have for ourselves so that we understand the things that can’t be explained. Maybe some things just need to be lived out.

Chemo is ugly, but God’s promises aren’t. He’s the only One who can take something horrible and turn it into something beautiful. Kyle and I are still waiting to look back on this journey and see just what that something turns out to be.

Riding the IV

KYLE AGE 20

Author’s Note: Last year, my oldest son, Kyle, relapsed with leukemia, making me a two-time Cancer Mom. I’m sharing our journey not to ask for your pity, but for others who trudge this same road feeling isolated and alone. And for friends and family who watch the suffering and want to help, but don’t know where to begin.

You can read the rest of the series here: Surviving the Storm

 

7 Comments

  1. Marcus Smith |

    I wish I could promise you–anything. That everything will be rainbows and puppy dogs and unicorns. That Kyle will move on with his life after this and never look back. That your family will never see such turmoil again.

    I actually cried today reading your post and I’m not a crying sort of person. But I’ve been in that damnable ocean before, tossed around by the storm. And I know what it feels like to be helpless.

    Your family is precious, and you are good friends who know who to offer a glass of wine or a box of wings to a weary traveler. Who know how to be hospitable in the storm.

    And while I may not be able to prognosticate and promise. I do know that you are loved and cherished by your friends, your precious family, and above all your faithful God. Who is with you, even in these dark times.

    I will never cease to pray for you and be vigilant for as long as you need.

    Marcus

    • Lori Freeland |

      Thank you, Marcus, for being so encouraging to me. And for understanding that it’s okay for me to grieve :)

  2. Sometimes there are no words. Sometimes words fall flat. And sometimes, when we’re grieving, we just need tears and hugs from those who care.

    We cry with you and we love you and your family.

    Think about this picture David paints: “You number my wanderings; put my tears into Your bottle; are they not in Your book?” (Psalm 56:8 NKJV)

    And I believe it’s in Revelation that God tells us those tears of the saints will be poured out on the altar of incense during the Tribulation.

    Just think of the treasure your tears are and will be and their significance to our God. He is saving them in His bottle!

  3. JUST LOVE YOU ALL TO PIECES!!!!!!!!!!!!!!!!!

  4. Lori, I hate that you are having to walk this road again. But I’m so glad that you have the God of all comfort by your side. When I worked as the pediatric neuropsychologist for the hematology-oncology unit of a children’s hospital, we celebrated the good days and the not so bad days, we held our breath on the unsure days, and we cried with the families and patients on the bad days. But you never really know what it’s like until you go through it for yourself…which we then did. Praying for you all and His sustaining strength and peace.

  5. I said I wasn’t going to read this. I didn’t think I could handle it. But I didn’t listen to the warning bell in my head and I’ve read the post. Does it scare me? Yes. But it’s truth and I really want truth more than a lie or the unknown. Thanks for your honesty. For being open when it would be easy to say, “Everything is fine.” You are amazingly strong.

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