Monthly Archives: March 2013

Free From The Sting

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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 Paradise!

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

The Running Of Chase

This weekend, we’re trying a video blog!  I’d introduce it, but our little movie does it all for me.  :)

[Please excuse the poor editing! I am still learning!]

Have a wonderful weekend!

~MbM~

Labs And Colors

Usually, I would only post this on Chase’s Facebook page (and it’s actually up there too – apologies for the double time), but he was just so cute, I had to share on the blog as well.  Chase loves the White Sox and makes a point of taking his special baseball (and as much gear as I’ll let him take) everwhere he goes…even into the MRI machine!  Every Thursday is a lab day and this morning, Chase refused to do his labs until he was properly suited up with his “gear”.

Chase shows his colors

Chase shows his colors

[note: that large monstrosity in the foreground is Chase’s 20+ pound, 16 hour IV bag]

~MbM~

Of Donuts and Tacos…

On several occasions, I’ve referenced Chase’s central line, his weekly labs and his dressing changes, but today, I’ll be a little more specific.  This morning, we took pictures of Chase’s dressing change.  The hope is that he could see what’s happening from a different perspective and that it would help him overcome his anxiety.

I need to preface these images by saying that it is necessary to hold Chase down with very little mercy for his own protection.  Despite months of talking, processing, and role playing, he becomes protectively enraged, and rightfully so, when anybody even gets close to his line and he must be still for a successful change.  When the dressing is off, one can’t even breath in the direction of the line without risking contamination…hence the nurse’s mask and our heads turned away from the uncovered site.

As I debated whether posting these pictures serves a helpful, edifying purpose, I decided to write this piece and use the pictures because this is part of our every week and even if you must look away (and I wouldn’t blame you if you did!), I hope it will encourage you how to pray for Chase (and his family) in more specific ways.

Stripping off the old bandage

Stripping off the old bandage

After being restrained on a flat surface by no less than two people (but preferably three…or four), Chase’s old bandage is stripped off.  This is without question the most tedious and the longest part of the entire procedure.  This is an area that we hope and pray tubes in his ears will improve.  When he’s screaming at the top of his lungs, he is unable to hear our assuring, calming words in what I can only imagine is a complete nightmare for him.

The central line

The central line

Here is a great and close view of his central line – and his poor and chapped skin, raw from months of bandages and tape.  These moments after the bandage is stripped when the line is completely exposed (while being cleaned and dried) are some of the most scary to me.  He struggles the hardest at this time and I find myself thinking that it would take so very little for him to pull it out – risking infection and embolism.

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Laying the bio-patch

After the line site is cleaned and dried and the nurse changes her gloves (this is how seriously sterile the care is – the same gloves that strip and clean the old can’t lay the new), the re-dressing begins with this bio-patch: a medicated, padded piece that releases antibiotics to keep the line clear and safe.  Chase calls this his “donut” for obvious reasons.  In this picture, he was beautifully silent and calm for a breath.  More often than not, he screams “Band-aid! Band-aid!” as he knows that the last step of the change is the bandage and he desperately wants to be done.

All done!

All done!

And then the bandage and tape are on and it’s done!  It’s hard to explain the flood of relief as we sit him up, sobbing and laughing at the same time.  Another week without mishap…thank you, Lord.  The entire process takes less than 15 minutes or a couple decades…depending on which body part you’re restraining.

The "Taco"

The “Taco”

In our house, because it’s Chase, we reinforce the dressing with an ace wrap.  The wrap, his “taco” (because of how it wraps around him like a burrito), is never off except for dressing changes.  We learned this the hard way after losing a line in the Fall.

Five minutes later

Five minutes later…

And then it’s five minutes later and the fight is a distant memory.  He loves everybody again and he’s busy watching a Disney show on his iPad while Phyllis, his home healthcare nurse draws his labs.  And by the time she leaves, he says “Bye, Miss Phyllis! Thanks for changing my donut!”

In closing, holding him down and watching him fight against this simple facet of care each week is extremely intense to me, but I am always so encouraged that this, this is the level of fight he brings to the cancer battle.  Almost makes you feel sorry for any tumor willing to take him on, doesn’t it? :)

Moment by moment.

 

Under the Miraculous Scar

Sitting in the sound-proof room for the hearing test, I repeatedly glanced at the vent on the wall to remind me that there really was air flowing into the room.  With a ceiling just over six feet tall and a floor space of not much more, it didn’t take imagination to feel like the room was closing in.

Having finally submitted (after a long struggle) to wearing headphones, Chase sat on my lap, waiting as he had been instructed to put a piece of the puzzle into place every time he heard a sound.

A high-pitched noise rose muted from the headphones – as loud as a scream in the quiet room.

Chase sat unmoving.  He heard nothing.

The sound came again – this time, louder.

Still…nothing.

It’s hard to describe the sadness…sitting there, hearing a noise that he should hear and letting the knowledge sink in that he did not hear it.  There are moments that I fight guilt for feeling this sadness.  After all, my child is alive.  Seven months post diagnosis and he lives and breathes!  How dare I feel sad?  But I do.  Observing these “collateral damages” of the cancer and treatment are intense and challenging even though we fully acknowledged the risks involved many months ago.

Finally, the tenor and volume of the sound changed and Chase immediately sat to attention with a gasp and practically threw the puzzle piece onto the board.  He had been waiting a long time for the sound.

After the test was complete, they showed us a paper with a graph – a gray bar along the top of the chart.  Pointing to the gray, the tech explained “This area here is considered ‘normal’ range…” and as she continued on, I studied the graphed lines – not a single part of which were in the gray.  I answered the questions as they came: yes, we had noticed his hearing was bad, yes, he does struggle to form words…

Yesterday, we met with more doctors and confirmed that there is most likely damage from tumor and treatment, but there is also a lot of fluid (a common problem from radiation).  It was decided that it would be in Chase’s best interest to have a minor surgery to drain the fluid and put in tubes.  It may not restore his hearing, but it will hopefully improve it and at least give the doctors a more true idea of what his hearing range is.

As admittedly silly as it sounds, I had hoped and prayed the the solution might be non-surgical, but that wasn’t meant to be.  As we processed this news yesterday, the words to a favorite song came to mind: “Whatever my God ordains is right, in His love I am abiding. I will be still in all He does, and follow where He is guiding…” conluding “He holds me that I shall not fall, and so to Him I leave it all”.

With these words fresh in our minds, reminding ourselves of God’s perfect plan for Chase and clinging to the promise that we will not fall, we press through these sad side effects.  After all, as I was lovingly reminded by a dear friend:

“Chase does not need perfect hearing to hear the voice of God.”

Moment by moment.

[Surgery date is set for Monday, March 25th as Chase will be in the operating room already for a lumbar puncture and chemo]

The unhearing ear under the miraculous scar

The unhearing ear under the miraculous scar

Compassion

As I stood in line at the pharmacy counter, I contemplated the astronomical bill I was about to pay for the poison I had to give.  UghChemo

As the very young pharmacy tech scanned the medicines into the register, I asked him if I could get a few syringes…preferably five as I have to discard them after giving each chemo dose.  He took a small bag and, to my surprise, began to fill it with handfuls of syringes.  After a moment, he handed me the small bag, stuffed to the brim.  I stared at him for a moment and then protested; “Oh my goodness, you don’t have to…” and this boy stopped me and quietly said “Just take them. Please. You can’t have a very easy life. This is the least we can do.”

I had to keep from crying as I exited the store …and then I had to laugh a little bit that a bag full of plastic medicine dispensers could make me cry.  But it was far more than the bits of disposable plastic – it was a most gracious understanding of an incomprehensible situation.  It was…compassion.

Moment by moment.

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Shadows And Love

During the Christmas season, I attended the most wonderful wedding – it was just what such a celebration at the holidays should be, yet as I sat in the dimly lit auditorium, I felt out of place. Weddings are joyous occasions and even as I truly entered into the happiness of the bride and groom I couldn’t completely escape the shadow of Chase’s cancer. …and so I sat, taking in the beauty and feeling vaguely guilty lest my shadow burden be apparent to anybody but myself.

Words broke through my distracted thoughts as a woman in a beautiful gray dress stood to do a reading. As she spoke, my shadow seemed to grow stronger. I couldn’t hear the words she spoke with anything other than cancer ears…even though I knew that they had been chosen to reflect this marriage love at the moment of commitment, but as she spoke the familiar words, my heart was soothed by the fresh reminder of the Gracious Provider…and then she began to cry…and I cried too because I had needed to hear those words.

Much later in the evening, Providence ordained that I meet the woman who read the verses: a divine appointment if ever there was one. I learned that she too carries a horrific cancer shadow. I, my baby boy…she, the spouse ’til death do they part. We talked and cried and felt helpless together in the middle of the beautiful reception and though I had never met her before and may not see her again for some time, she is my sister because of that night.

Many times since then, I’ve pondered the strange mixing of the celebration and the sadness, and the family relationship with a complete stranger because of the pain. In my mind, pain and joy belong in different universes, yet from birth to death we cannot separate them any more than we can separate ourselves from the Sovereign One who created us.

Here is an excerpt of the words she read that night…

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39

Of this I am sure, there is a mercy in the shadows of pain – a severe, but present one nonetheless. I do not even pretend to know what it is, but I know it is there because I, and she, and all who walk a painful road walk it next to the Everlasting Love who has known us always and will know us still and what is a dim shadow now will be crystal clear when we see Him face to face. Even so, come soon, Lord Jesus, come soon.

Moment by moment.

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Take Off The Bag

Sixteen of Chase’s every twenty-four hours are spent attached to an IV bag. This bag, its carrying case and the pump weigh about as much as he does (when the bag is full) and he must drag it behind him everywhere he goes. In addition to the weight, the cord has a short range, so he can only walk about two feet before it pulls and strains; reminding him to pick up the burdensome piece again. The moment it beeps (a notification that the cycle is complete) is the happiest moment of his day and as soon as he’s detached, he immediately starts running and jumping…two things he really can’t do without causing harm when the bag is on.

However, there was a day last week when the IV pump notified it’s completion, and instead of the jubilant “My baggy’s done!!” that I usually hear, there was silence. I went to him and said “Chase, your bag is done! Do you want me to take it off for you?” He sighed and said “Not right now, Mom. I’m playing…maybe later.” He had become so engrossed in his play that he was no longer energized to remove that awful shackle of a bag.

And I suddenly saw myself in this encounter…

How often I struggle with fear and sin that -with God’s help- I could lay aside! I could find peace, find rest, and be free of whatever burden holds me. He comes to me, much as I came to Chase and says “It is finished, this can be removed…will you let me do that for you?” …yet in my foolishness, I am content to play while my worry and fear is attached to my very life vein because I am too preoccupied to see that He stands there -more able than I will ever be- ready to remove it.

“…let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1b-2

Take off the bag. It is finished.

Moment by moment.

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