This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.
This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.
The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.
In the Fall of 2012, Chase wandered the halls of the oncology ward while I diligently followed, pushing his IV pole with loving care (and not a little trepidation). As we paced, we crossed paths with a father pushing his young son in a stroller (IV also in place) and as families often do, we stopped to talk.
The boy in the stroller was a little younger than Chase, but they stared at each other earnestly. And I do believe it was the first time Chase really saw another little boy who looked like him with the hairless head and the white skin and the tubes protruding from his body. A curious knitting together.
The dad and I exchanged stories cautiously for no one ever wants to pry into the pain, yet there’s almost always the desire to know you’re not alone in this decimation of the life you’d envisioned.
As we spoke, I came to know that their diagnosis was fresher…and I felt like an old pro. We’d been devastated since July. They’d only just started.
And the crazy thing was… statistically speaking in that Fall of 2012, Chase was supposed to die – his cancer defied his chemo, his body routinely on the verge of giving in. Chase was supposed to die…and Lucas, well, Lucas was supposed to live.
That day, I watched the shock and pain spring into the father’s face as the dawning realizing hit that we both had death sentences, but one of us seemed more likely to suffer that fate. And that look on his face in the Fall of 2012, the shock and horror and beyond was not unlike the look in his eyes when Bob and I hugged him close while we stood beside Lucas’ tiny coffin – not four years later. We’d barely celebrated remission. Nobody saw the huge lung growths coming.
There is simply no accounting. There are no good words for what it was like to see such a small coffin and the hands that pushed toys around the playroom next to my son – stilled forever in eternal sleep.
And his parents and brother still breath.
There are no words.
But I write this out today to honor Lucas and for the sake of his parents and brother too. Sometimes, there is absolutely nothing good to be said to those asked to walk this horror, but we can remember. We can sit with them in their pain – inasmuch as we can ever understand that which we’ll never understand.
So, take the story of Lucas (how I wish you could have met him and known a little of his amazing life), hug your loved ones close, and reach out to those around you who are grieving…who must still draw breath when a part of their heart stops.
“Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again.” Henry Scott-Holland
Looking forward to The Day...
Moment by moment.
Chase and Lucas in the oncology ward playroom, Spring 2013
Dear ones, this last month has been full of speaking and writing projects, but I wanted to go back in time just a little because I miss you and it’s been a long four weeks. I originally wrote this in the Easter season of 2013 while Chase was in treatment and I’d recently received some very critical feedback on desiring to find joy in suffering. A dozen times, I sat down to write out a “So there!” defense of where Bob and I stood, but there were no good words…until Easter. My freedom to write isn’t bound up in who I am (I need no argument or plea!), but rather, in who God is.
Free to write, free for joy, free in Christ because of the cross.
I hope you are free this weekend, this year, and this life too.
Our weeping is for a season, but joy comes in the morning (Psalm 30:5).
Waiting for the Eternal Morning!
~ E
As a Christian, Easter is one of the most important times of my year. It’s the season I set aside to celebrate what Jesus did for me, but this year is more precious as I consider how the events of Easter fit into our cancer world.
I believe with all my heart that Jesus is the son of God, that the Bible is true, and that the promises it contains are real and this is why I so often include verses in my blog posts–to remind myself of what I know to be true when my circumstances are overwhelming (which they often are). In those moments, I literally have the physical sensation of drowning. Believing as I do doesn’t change the pain of cancer or anything else in this life, but it can and does change how I face the drowning moments.
Often, like the thief on the cross next to Jesus–not the mocker, but the other–the weight of life and pain (some self-inflicted, some not) closes in and I cry out. And then comes the reply,
“Truly, I say to you, today you will be with me in Paradise.”
That’s it! This is the answer to the agony. The pain and suffering is only a season, because death is swallowed up in Jesus’ glorious victory and its sting is gone. One day soon I will be with Jesus in Heaven!
Because I know God made me, and I will be in Heaven with Him forever when this weary life is over, I am freed from the drowning to feel joy in sorrow and peace in chaos. Death may be sad, but it need not sting because this life is not the end, but the beginning.
In the midst of this cancer world, there can be incredible, inexplicable peace because my ultimate struggle has already been resolved. My sin was taken care of on the cross by God Himself! All that happens in my life is what He lovingly allows for His pleasure and glory. Someday I will be complete and lacking in nothing and with Him forever in fullness of joy.
This is my cancer foundation. This is my life foundation.
Moment by moment.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelations 21:4
Amazing Easter thoughts that encouraged my heart today ~
I know I’ve said a lot of this before, but today, it needs to be said again: Each despairing, awful pit looks slightly different, but we’re all down here, in here together.
Your emotional and physical survival of everything from the next breath to the next decade will be almost as trial-and-error-ridden as your sweet baby’s treatment journey – just know that right now and know it’s okay too. It’s normal. Well, more “normal” really. Life circumstances just tried to cut you into tiny pieces with words alone – words like “cancer” – and continuing to breathe in these days is a victory not to be discounted.
Self-care when your baby’s in the ICU seems wrong and even selfish, but it’s not, I assure you. No matter how your inner voice wants to condemn you for anything short of laying yourself out next to them in the same pain they’re experiencing, please, please remember that your darling child’s care is only as strong as you are. You are the advocate and the voice, and 99 times out of 100, the responsibility of medications, schedules, feedings, sterilizations, etc, will fall to you. I’ve found it’s much easier to deal with it when I can see straight.
So, with that in mind…
Rest when you can. Trust me, there’s a reason sleep deprivation is used as an alternative questioning tactic in military protocol. When Chase was in treatment, I would have confessed to anything and actually had to stop driving because I was seeing wavy lines and shadows in the corners of my vision. Having a pediatric cancer patient is not unlike having a brand new baby in this way – please try and sleep when they sleep. You’ll need it.
Walk out of the hospital.For real. Even just down to the sidewalk in front of the building and then back. It sounds like the tiniest thing, but if you don’t make a conscious effort to incorporate the outside world in even minuscule ways, it will shrink and then go away entirely – leaving you with nothing but the cancer – which isn’t mentally healthy. And, let’s face it: who among us wants to give this awful terrorist of a disease that kind of credence in our lives? [hint: not me]
Seek a community. Church, friends, family, other cancer patients. Get involved on some level. Don’t let cancer take up all your mental and emotional energy. It doesn’t deserve that much from you. See also: my previous point on world-shrinkage.
See your dentist. Yes, I said it and meant it too. There’s a reason I don’t like to smile with my lips open. When you spend days being shuffled from room to room for appointments and rushing to emergency rooms, you’re just trying to remember to breathe, and maybe if you have an extra second; eat. There’s very little time for thoughts of flossing. So, from me to you: treatment will take it out of you on so many levels, but if at all possible, remember you have a dentist.
Have a mental safety net. Whether you see a counselor, talk to your spouse, or sit down with a dear friend, have someone there to keep you from feeling like you’re going crazy. Cancer is truly a war of it’s own kind. Your body responses will become conditioned to incredible long-term, high-stress scenarios and evidence points to this type of emotional and physical toll not being healthy for the brain. Some universities and medical institutions are even starting to pick up study links between traumatic pediatric care-giving situations and high rates of post traumatic stress – the same thing soldiers who’ve been to war face. This area is no joke, dear sister-mamas. Don’t be afraid to get help. You’re not going crazy. Your life is crazy. And no matter what you’re feeling, YOU ARE NOT ALONE.
There are so many other things I secretly want to throw out for you: go out with friends, have friends come to you, eat chocolate, read a book, cry, laugh, write, take a long walk… But the last thing you need right now is one more person telling you something you need to remember – yet one more alteration you’ll be making to your life. Psh… Chances are good you’ve already experienced enough alterations to last for three life times.
Whether you’re arms will one day be empty or atypically full, life is desperately short. No matter the kind of cancer story you’re called to, it will undoubtedly be a life-long marathon, not a sprint. So, stay the course, dear sister-mama. You are not alone.
He stood in front of me, a grin splitting his face – an aging face covered by too white skin – the kind of skin that only comes from long days of chemotherapy. And then, even before I said my name, he took my hand in his and held it to his bald, stubbled head; the forever symbol of brain tumor treatment. His grin was huge. “God is good”, he said.
The last time I saw him, I was only 12 years old and I remember him in those treatment days, too thin and chemo white, his high, clear voice calling out loud and true in a quiet church sanctuary; proclaiming life and joy in something I couldn’t at that time imagine: deadly brain cancer.
This sweet, charismatic soul stood on the cutting edge of treatments long before they were ever standardized enough for children like Chase. He faced leaving a wife with two little children. And there were days this strong man of business and numbers was so weak that he was carried into the radiation room. But against all odds, he lived. Lived over twenty years after doctors first shook their heads, marveling at a miracle of clear scans where cancer had been.
He stands close as he tells me that he does not sleep much at night, and then a shadow crosses his face as he apologetically explains that he may not remember my name after we talk. “What happened long ago is clear, but these days, not so much…” he shrugs and grins again; “You see, I have short term memory loss.” A concept he doesn’t yet know that I understand too well… I simply smile, “Please don’t even think of it. I don’t care. It’s fine.”
As he stops to catch his train of thought and I reflect on his expression of joy that he’s down to six daily medications from sixty, I have to ask… “How do you do it? I am barely breathing after four years and I can’t even fathom twenty. How…just, how?”
His hands grow steady and his clear voice is especially strong, his gaze deeply focused as he puts forth a phrase that’s clearly been tattooed faithfully in the damaged brain tissues of memory: “You have to remember…’momentary light affliction’. All of this is momentary next to what Jesus did for us.” And then his hands came up to the sides of his eyes, like blinders on a horse, “You can’t look back, you can’t look at anything else, just Jesus.” And just like Chase, he repeated a few more times “It’s all ‘momentary light affliction…” and then a small laugh accompanies the most genuine of smiles; “Can you even imagine?”
I can’t. He breathes twenty years into hell and hardship and counts it nothing because Jesus is enough.
Can I? Will I? I believe…help my unbelief.
And then something flickers in his eyes. “Do you like coffee?” When I respond in the affirmative, he reaches into his pocket and pulls out a Starbuck’s gift card. “Here,” says the man whose damaged memory ensures he can’t work anymore. “Take this. It was a five-dollar bonus on my Chase card this month. I don’t need it. It’s yours.”
I have short term memory loss… Deeply damaged, yet joyful.
I don’t need it. It’s yours… Empty, yet giving.
It’s all momentary light affliction… Broken, yet pressing on.
And me? I don’t think I’ll ever be able to hold this green and white bit of plastic in my hand without remembering the guileless smile proclaiming that cancer is nothing compared to the cross.
Moment by moment.
“For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:17-18
