Sad? Happy? No Other Adjective Properly Describes This Strange Feeling

Truthfully, the thought never even remotely came close to crossing my mind. Little did I know that at my routine bone marrow transplant check-up this morning, it’d be my last.

His words in a nutshell: “Your primary care doctors have written detailed notes on you, & you’re doing really good,” Dr. Yanik reported. “You don’t need to see me anymore.”

WHAT?!?!?!?!?!?!?!?!?

I’ve been regularly seeing the indescribably spectacular Dr. Yanik for the last 17 years of my life, since I was 16 years old!

Weird, but I almost feel like the good news is a giant slap in the face.

On the 1 hand, it’s fantastic to hear I’m in such good condition

– my blood counts are within normal range &

– my immune system is pretty much back to normal (finally!!!)

but on the other hand, a steady part of my life for the past 17 years is unexpectedly being stripped away.

≡ My 2 unrelated bone marrow transplants,

≡ 60 infusions of Arsenic,

≡  Countless transfusions of blood products,

≡ Too many Intensive Care hospital admissions,

≡ Months spent admitted on the cancer floor,

≡ Rare Moments of Positive Medical News,

≡ Devastating Times of Especially Menacing Health Crises &

≡ Years upon years of doctor check-ups like today’s:

It all adds up to

Many Very Significant Lifelong Memories

that equal

A Patient Who Will Not Miss being sick,

but will miss

her all-time favorite physician who was with her while she was.

Dr. Yanik 7-17-17 on my last visit.PNG

Dr. Yanik my last visit 7-17-17

Bear with me – (based on what I learned from my nearly-decade-long cancer journey) I’m trying to offer Valuable Insight For Parents Raising Children Facing Long-term Illness

1. Give your child, if they’re probably around the minimum age of 10 – I was 13 when I began fighting years of illness so I’m just giving my best guess for ages here – Room to Breathe! Endless hovering makes your child feel even sicker & draws unwanted attention (I hated that).

2. Don’t try to force your child to attend groups & camps with other kids dealing with the same sickness! This will Not in any way, shape or form make them feel better. I wanted nothing at all whatsoever to do with stuff like that because 1, I was nowhere near comfortable discussing my own personal disease at my young age & 2, Going to camps with other sick kids would mean embracing the illness, which was the VERY last thing I wanted to do. I remember thinking, “What do you do? Just talk about how sick you are?” I didn’t want to dive deeper into the world of my sickness when I was a child fighting leukemia; far from it! I wanted to be as normal as I could.

3. Give your kid a notebook & pen in case they feel, like I did at the time, like writing out the things they are going through & what they are feeling. I know I always felt a lot better after writing down my thoughts & feelings, which I mostly wrote as rhyming poems. Writing is a remarkably effective release, that I later read in a psychology book in college even has a term, which is “writing therapy.” It truly is indescribably therapeutic.

Tenth Time of “The Sender” Similarities

The second page of the fortieth chapter describes cancer-treatment fatigue well. “Charlie felt pretty good, considering the short walk down the hall tired him a bit.” “The hall” was a dreaded term for me on the hospital cancer floor. Continuous daily suggestions to get out of bed & walk down the hall were not times I wanted to partake in, feeling so weak & lousy from all the nasty strong drugs pumped into me.

Often a goal from my nurse or my Mom would be for me to get out of my hospital bed & walk – accompanied by my constant companion the IV machine & somebody to help my broken body stay upright to take steps of course – down 3 doors, & a little more each day just to get my body moving until I could make an entire EXHAUSTING lap around the floor. I hated that! Not to mention the tangled mess of IV tubes all around me; 1 slip = potentially yanking out an IV line. Nothing was better after that than collapsing back into bed.

You’re more likely to get cancer again if you’ve already had the disease once, so sunshine is strictly limited since no one’s looking for skin cancer or any other ailments. Charlie spent “a few minutes” in sunshine, “only what was allowed,” so reading the latter quoted phrase sparked the memory.

One lesson in a letter from “The Sender” is that you can either live in “Vision” or in “Circumstance.” My spectacular Mom chose to live in vision, informing doctors while I was deathly ill in Intensive Care that I would go to college one day; the doctors, she told me later, would sadly shake their heads at the impossible thought she envisioned for me. Luke 1:37 “For nothing is impossible with a God.” God gave me an incredibly special hardworking & encouraging Mom who never let me dwell on my sick circumstances but rather, had me always look towards a bright future. I love you so much, Mom, THANKS!!!!!

   

Did a ton of bricks just hit me? No, it was page 207 of “The Sender.” Although Charlie was experiencing the physical negative effects of cancer in many ways, ways like his weakness which was easily noticed by others, those close to him knew he was “stronger in so many ways. Ways that mattered. . . What he’d gained was immeasurably more valuable. What he’d gained was a heart and spirit that money can’t buy.” Same For Me. EXACTLY THE SAME.

However, even with the above paragraph in mind, it’s impossible for me to say “I wouldn’t change what I’ve learned from 8 years fighting cancer for anything” because of the hell on earth that I went through to get where I am. I mean, even if I never had cancer, I’d still be the smart person I was before I got sick. The side effects I live with now make life enormously difficult; I’d go with never having had cancer in the first place if I had my druthers, but this is where I need to trust All-Knowing God with my life’s plan because He Knows Best.

 

 

Doin’ Fine & Here’s Part 9 – of “The Sender” Similarities

On chapter 38’s page 194 “The Sender” writes in a letter “And I guess you grow up when you get cancer. . . Sometimes it’s God’s way of growing us up.”

Definitely. Cancer is no joke. You feel emotions & gain perspectives you’ve never had before. You experience an abundance of life well beyond your years. I grew up when I was 13 & underwent my first 3 rounds of chemotherapy. Growing up involves doing things you don’t want, but need, to do – like the plethora of unpleasant protocol associated with cancer treatment & also signing an advance directive with a living will on multiple occasions in case I died, even though I barely understood what the paperwork was that was being shoved in my face – as well as thinking about the important parts of life that truly matter:

including all of my different relationships with people & how I wanted to make them better relationships,

&

wanting to make each day a meaningful one – no longer flawed with conflicts now seen Clearer Than Ever Before as SO pointless & insignificant aka colossal time-wasters – with my very strongly renewed appreciation for the GIFT OF LIFE now that I had to fight so hard to keep mine.

I remember years ago feeling insulted thinking of the common line out in the world that says “If you don’t have your health, you don’t have anything,” because I felt like I had grown so much in wisdom despite not having my health. This line from the book is so true for every person: “But God will grow you up one way or the other and he seems to do it for his reasons, not ours.”

I’ve discovered firsthand that you never know how strong you are until you need to be. Had I known the extent of my multiple-years horrific cancer battle ahead of time, I never could’ve handled it. Too much! Referring to the little boy also battling cancer who became a friend of Charlie’s, “That little acorn needed to summon something inside of himself that only a cancer survivor can know. It’s a special sort of grit and faith and vision and tenacity.”

It’s unbelievable what people can handle when they need to. Like a line in the book, “It’s all about choosing despite how you feel” (“choosing” to . . . be positive rather than grumpy; be strong instead of weak; be a fighter & not give up, etc). With God & my family’s ceaseless loving encouragement & support, looking back I’m astounded at all the things I had the strength to endure throughout my 4 relapses with leukemia. Honestly, it’s hard for me to wrap my brain around the fact that I actually did it. And AT THE SAME TIME successfully graduated both high school & college. All the glory of those immense accomplishments goes straight to Our Powerful Lord and Savior Jesus Christ!

(Lucky?) Seventh of “The Sender” Similarities

This piece resonates with me from Chapter 25’s closing paragraph: “Don’t waste your cancer. The world has opened up to you. Your heart has opened up to many other people because of your cancer.”

Wasting my cancer journey would be learning nothing from my illness experiences & going back to living the same way I did before entering what I call the “cancer world” – because it is a world like no other & few understand its meaning.

In 1 way, I hate cancer because of how it’s physically ruined my life. And, oh, it has. Walking with a cane. Suffering from dry eyes. And a cotton-dry mouth. A permanently extremely weakened immune system. Pathetically damaged joints. Weak thin bones. Minute energy. No balance. I can’t smile due to facial paralysis. I wish I could smile again, that makes me sad knowing I can’t.

In 1 way, though, I am indebted to cancer for the numerous life lessons fighting the disease has taught me:

Like living for the moment because the next can be wholly different. – This meant for me, completing schoolwork from high school & then college as soon as I could, because 1 hour during my cancer journey I could feel fine laying in my hospital bed writing an essay, but by the next hour I could be too nauseous to lift my head.

Or accepting people with no regard to their personal appearance. Having used a walker, wheelchair, 4-point cane, sported a bald head under a hat, been struck with facial paralysis, been so pale one guy at a church I used to attend asked me if I had to stay out of direct sunlight, seen children who don’t know me being obviously uncomfortable with the way I look – I now know firsthand, very well, what it’s like to look different than the norm & that Appearances Don’t Define A Person. In a nutshell, since appearances don’t define a person it’s beneficial to employ an acronym I came up with when you see someone who looks different from anyone you’ve ever seen before. All you need to do is A.S.K. Always Show Kindness.

The “saving the best for last” cliché rings true here as I share my lesson learned of the most importance: Spend time loving other people, not hating them. Arguing & conflicts are a mammoth waste of time in lives so fleeting as ours. “Ours” meaning Every Single Body On This God-Created Earth.

 

Here’s the thing: “The Sender” Similarities PART SIX

The thing is, I’m posting as I’m currently daily reading through “The Sender,” so expect several more posts since my dry eyes limit my reading amount.

One chapter I read today shared my thinking as well. The idea in the letter from “The Sender” in the 21st chapter is that instead of dwelling on your Condition, focus on your Position. Specifically, the anonymous friend sending letters of wisdom, insight & encouragement who called himself “The Sender” to Charlie, was saying think about the positives in your life – including Charlie’s wife, 2 daughters & football players – rather than your disease.

Similarly, my strong commitment to schoolwork was the Position I focused on throughout my years having a cancer Condition. What I’ve learned in hindsight is that looking ahead to success truly can immensely influence battles you are fighting. That’s not to say you won’t meet challenges, but obstacles are easier to overcome if you don’t give in to them & don’t give them the power to make you defeated or depressed. Attitude does affect outcome.

In the middle of leukemia treatment, & like “The Sender” says, focusing not on my current cancer Condition but more positively, mostly on my schoolwork/student Position

 

 

And 5 Golden . . . “The Sender” Similarities

Good news, friends, today I hit page 100, so I’m nearly halfway through the book! Chapter 17’s page 96 gave a reality check. “It seemed to him that the reason people didn’t like talking to sick people is that it was just too real: nobody had anything they considered worthy of the magnitude of the moment and were afraid of saying the wrong thing. And all the sick person wanted was for someone to show up.” That is the reason that many years ago during cancer treatment I wrote the poem “True Friends are Hard to Come By.” People you thought were friends stop contacting you as you keep getting sicker & sicker & time drags on; they drop like flies. The cancer battle weeds out the lousy supporters you thought were friends & brings out your True Friends & Relatives. Jessica is a TRUE FRIEND through it all!!!!

Here, when I was 14, my short hair was growing back after my 1st 3 rounds of chemotherapy. (Little did I know that “Chemo Curl” was coming!)

Chapter 18’s 2nd to last sentence describes me, too. After Charlie learns the lesson from “The Sender” to be a blessing to others rather than looking for your own blessings, the book says “With this steel he would build a life committed to showing people how to win the game of living. In that moment he became something new.”

I’m thankful to be reading this book because the above quote reminds me that I need to use my life that was spared from a cancer fight I should’ve (based on doctors’ opinions & statistics), most definitely lost, to be a blessing to others. My goal in life should not be to better myself, but help better others. Like “The Sender” wrote in 1 of his letters to Charlie, keeping your eyes open while you look for opportunities to be kind to & bless others, will train your mind to regularly think that way. If only I could keep that thought daily! The Bible verse that I try to live by, upon learning that life has obstacles everywhere for everyone, is 1 Thessalonians 5:11 which says Therefore encourage one another and build each other up, just as in fact you are doing.

I hope to use my God-given life, which I try to share freely on my blog, to be a source of encouragement to people.