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Category: Cancer

Posted
August 29, 2016
Category
Cancer, Fear, Grief, Happiness, harmony, Kindness, Pediatric Brain Cancer, Positivity
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2 Responses

At a Loss


Words cannot touch grief.

I have lost people I love dearly, but experiencing loss does not give me any special insight. All I can bring today is what I know. I know my own story. I know several families with critically ill kids, and I see them. I am them.

But then, there is loss.

What can we do when yet another family transitions from fighting to mourning? Condolences can ring hollow – especially when directed at a newly grieving family. But that doesn’t mean we shouldn’t speak. There is already enough silence in death, and we shouldn’t add to that chasm just because we can’t find the words.

We must get over the fact that we might not say the right thing; there simply is no blanket statement or correct sentiment to ease unimaginable grief. But we can do something. Send a card. Make eye contact. Make a casserole. Make a comforting noise. Make an effort to share our light and our self and our time.

Even more importantly, we must continue extending that light in the years to come. Life goes on for the observer, but for the observed, a dynamic part of the world is forever stopped.

Being afraid of death or confused by the “why’s” should not take away our ability to offer something of ourselves to those in mourning. From my perspective, I see three kind approaches: be there, be patient, and be genuine.  If we reach out with thoughtful concern, most of what we do or say will have merit.

We can’t expect to fill the void, but we can put a part of ourselves near the memory that lives on. Where there is nothing we can put something.

Our attempt may seem insignificant, but any thoughtful act can find a place inside the hollow of grief. That is the only way I know of to keep surviving loved ones from trying to exist on empty.


Peace.

Posted
August 24, 2016
Category
Cancer, Charles M. Schulz, Growth, Guided Imagery, Happiness, harmony, Kindness, Pediatric Brain Cancer, Positivity, Snoopy, Stress Reduction, Wellness
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Puppy Imagery

Guided imagery focuses and directs the imagination in proactive, positive ways. It can be just as simple as an athlete’s 10-second reverie, just before leaping off the diving board, imagining how a perfect dive feels when slicing through the water. Or it can be as complex as imagining the busy, focused buzz of thousands of loyal immune cells, scooting out of the thymus gland on a search and destroy mission to wipe out unsuspecting cancer cells. –Belleruth Naparstek

Some may simply call it “visualization,” but it goes beyond pictures in our head. Most of us have probably experimented on some level with its effectiveness on our own creativity, performance or anxiety.

More recently, research findings have demonstrated its positive impact on blood pressure, short-term immune cell activity, headaches, anxiety, nausea and fatigue- some of the all too common struggles faced during cancer treatment. Most find benefit by as little as 10 minutes of guided practice.

Guided imagery is considered a form of meditation, but requires minimal time and skill. This gentle yet effective technique can be tailored to the “genius of each person’s unique imagination” (Naparstek 1994).

Abram used his own personalized guided imagery on me last night. He was finishing his bath, and I was rushing around getting his towel and clothes ready.

For some reason, I was bent on finding “the” towel I had washed earlier that day. I’m not sure if I was tired, or if the towel actually has magically superior fibers, but when I found it crumpled and damp near the dirty-clothes basket, my shoulders tensed and I let out an exaggerated exhale through my nose. As I walked back to the linen closet, I felt I had to “settle” for a smaller, less plush towel. How ridiculous is that?

With bubbles on his semi-bald head, Abraham busted me out for acting rammy and flustered. He stopped me and ended my ridiculous huff by saying,

“Close your eyes.”

So, of course, I did.

From the tub, he instructs me, “Think about a super-soft kitten that doesn’t scratch curled by your neck, purring. It is all gray with one white paw and a bright pink nose. And there’s puppies in your lap.”

“What color should the puppies be, Mom?”

“All different shades of black and brown,” I replied. And then I added, “with floppy ears and that sweet puppy-paw scent.”

I didn’t peek, but I could tell he was pleased with my reply.

He continued to create my happy picture with images of Woodstock and Tweety Bird perched on my head.

“Do that for ten seconds or so.”

And, I did.

My young wiseman concluded our session with, “Use those thoughts when you’re stressed out, Mom, like with taxes.”

🙂

And just like that, I shifted my mood and my energy from frenetic and forward to calm and current. I had helped Abram use this meditative practice in the hospital before, but this was the first time he’d guided me to peace through a soothing “imaginary pet massage” (as he likes to call it).

I try to live in the now, but at certain times, I lose myself and spiral into a frenzy. When my mind calms and I realize that the moment I am in is the only one I am guaranteed, I regain my perspective. And luckily, when I forget to check myself, I have a Zen child who reels me back in.

Any of us can overreact or feel disappointed, but with a shot of awareness and a measure of practice, it’s possible to find peace at the same time.

Our bodies cannot escape the busy necessities of the world, but the quiet of our mind is ours to protect. No one, nor act, nor task should guide our thoughts without our permission. And when the noise creeps back in, there is always guided puppy (or kitty or birdy) imagery to quiet our thoughts and soothe our soul.

Peace and happiness…

Posted
August 23, 2016
Category
Cancer, Fear, Happiness, harmony, Pediatric Brain Cancer, Positivity, Stress Reduction, Wellness
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5 Responses

Life Flies

Time doesn’t fly. Time is measured and monitored and documented and feared. Life is fleeting; life is what flies. 

Abraham is at school without me, and the nursemaid in me wants to bring him a smoothie and a cool rag or maybe some fresh socks. Tommy gave junior high a 10 out of 10 on his first day, and the mother in me (much to his chagrin) hugged him huge in Walgreens and clapped her hands in excitement. What an auspucious start to the school year!

I’ve dropped both boys off for Day 2, and I’m in the car alone. I have things to do, but I can’t seem to pull out of the primary school parking lot. And no, it’s not just because of the buses;) I’m trying to catch my breath from life whizzing by so quickly. 

Eventually, I will drive home with my heart still aflutter. I will keep checking for a text or a Kankakee School District phone number to pop up. Surely something daunting or crazy or crushing is going to happen, right? I mean, this is so normal. 

Normal never felt so unexpected. I would never wish our bumpy road on anyone, but I do wish more people could share in the unexpected joy of life’s basic but swift motions.  I can’t express strongly enough what every cancer patient and caregiver wants you to hear: stop complaining, stop ignoring and start appreciating.  Anything less is a waste.

Posted
August 22, 2016
Category
Cancer, Fear, Happiness, harmony, Pediatric Brain Cancer, Wellness
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Start Where You Are


Once again, it is time to trust the magic of new beginnings. A new week, a new school year, and a new independence for my sons – and myself – begins today.

Chris and I can’t remember the last time Abram made it through a full school day. Nearly two years, perhaps? I think he had a decent stretch of full days in November 2014. And of course, he missed the final week of Kindergarten when the tumor was first discovered.

We will take it day by day. Abram still has doctor and physical therapy appointments to keep, but our intention is to see what his body can handle and work with it.

I approach each schoolyear with a no nonsense attitude and high expectations. Out of habit, I feel my blog is reflecting my teaching style. I am fine with that. The topics on my mind right now aren’t easy to explain and until I work through the basics, I will stick with my teacher-mode voice.

Even though I continue to write in a serious tone, I am certain I will work up nerve enough to relax into a bit more humor. Trust me, I’m a clown at heart. As a child, they couldn’t get me to quit long after the joke had gotten stale. My apologies still go out to my older brother and sister; I realize now telling the punchline once is sufficient.

May the week be a strong one.

Peace…

Posted
August 18, 2016
Category
Cancer, Fear, Happiness, harmony, Pediatric Brain Cancer, Stress Reduction, Wellness
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Proton Radiation

Unfortunately, odds are that you will know someone diagnosed with cancer. If radiation is a treatment option, please let him or her know about proton therapy. Since this is one of the few advances to potentially reduce the damage wrought by conventional cancer treatment, I want to tell anyone who will take or make the time to listen.

According to the American Brain Tumor Association, “Proton therapy uses accelerated subatomic particles called protons (energized particles that have a positive charge) to send a high level of energy directly to the tumor site through a magnetically-guided beam. In proton therapy, energy of the protons – along with the depth of penetration – can be conformed to match the unique size and shape of each tumor. This helps to minimize the destruction of surrounding healthy tissue and organs and theoretically decreases acute and long- term side effects, such as neurocognitive deficits (e.g., short-term memory problems) and hypopituitarism (i.e., hormonal imbalances). This benefit is particularly important for young children who are still developing. Less damage to healthy tissue means potentially reducing the development and intelligence changes that can occur with conventional radiation. Additionally, studies show that proton therapy can also result in fewer late effects, including secondary tumors from treatment, a major concern among physicians and families when a child – especially a very young child – is undergoing radiation treatment.”

While proton therapy has been used to treat brain tumors for nearly 60 years, it has only recently been approved for use in the United States. We are fortunate to have had access to one of the few facilities administering this technology, the Chicago Proton Center. http://www.chicagoprotoncenter.com/

Long-term effects of cancer treatment are one of the prices paid for a continued chance at life. As a family, we weighed the risks, and we took them. We do not know what the future holds- no one- not even the healthiest of individuals- can ever be sure of how many tomorrow’s they will see.

A year ago, I documented a day at the Proton Center on Facebook:

“Mondays are always jam-packed for Abram: oncology doc, port access, chemo 1, chemo 2, neuro-oncology doc, and then proton treatment. His port is already accessed so the hard part is over. It will be a long day, and counts are down so I will be giving him a shot later. But, the smiles remain :)”

At times over the past year, we have felt overwhelmed with the numerous decisions included with Abraham’s treatment. Many can offer advice, but ultimately, everyone must gather as much information as possible (in a timely fashion) and choose what is best for him or her.

We made promises to return to the Proton Center and CDH after treatment was complete. With school starting next week, today was our chance to go visit. My sister picked us up, drove us up, and we made the rounds!

Here’s our first and favorite friend who showed us the chemotherapy ropes: Nurse Jenny!

So much love.

Next we stopped at our home away from home, The Ronald McDonald House.

Our final stop was at the only restaurant Abraham enjoyed during our eight-week stay, Gnarly Knots.

http://www.gnarlyknots.com/

If someone would have told me that I would return to where some of our hardest days were spent, I would doubt it being high on my end-of-summer “to do list.” But a large part of the tenacity demanded by this horrific disease took root in these hospitals and cancer centers. It was under the care and guidance of sweet souls like Nurse Jenny where our strength and hope grew. They taught us that if we watched and learned and showed up for the fight, we were tough enough to make it through every round. And we did.

Peace, hope, and strength…

Posted
August 17, 2016
Category
Cancer, Charles M. Schulz, Fear, Happiness, harmony, Pediatric Brain Cancer, Positivity, Snoopy, Stress Reduction, Wellness
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4 Responses

 Snoopy Day

“I don’t know the meaning of life. I don’t know why we are here. I think life is full of anxieties and fears and tears. It has a lot of grief in it, and it can be very grim. And I do not want to be the one who tries to tell somebody else what life is all about. To me it’s a complete mystery.”
-Charles M. Schulz, Charles M. Schulz: Conversations

Pretty dark thoughts for a beloved cartoonist, isn’t it? Perhaps Schulz’s ability to acknowledge the grimness of grief while maintaining a sense of humor is one of the reasons he has remained relevant and inspirational for nearly seventy years.

Yesterday, I struggled amid minor setbacks. Abraham’s legs were giving him trouble, so we needed the wheelchair to get him around the hospital. It had been months since he had needed the chair. Next week, we are hoping he will return to school full time. I started to panic that he wouldn’t be ready. I worried that all the therapy and hard work still wouldn’t be enough to get him back with his friends on a regular basis. Then I took a deep breath, and replayed the positives in my head.

First and foremost, Abraham is happy. Second, labs yesterday were all heading in the right direction, and the thyroid panel was entirely within the normal range. Third, although the nausea did get the better of him before the visit was through, we made it home safely, and everyone slept through the night.

Once yesterday’s anxieties were back in check after counting a few blessings and getting a good night’s sleep, today blossomed. Abraham is a happy old soul who loves all things Peanuts. He and Grandma Annette have been planning a chemotherapy is over/end of summer shindig, but none of the days seemed quite right.

Yesterday was the last of his summertime hospital appointments, plus this week is Snoopy’s birthday, hence, Snoopy Day! Before we even entered Grandma’s house, Snoopy was there to greet us at the front door:


We dined on Snoopy’s favorite meal: root beer and pizza. And of course, there was cake!

I’m not sure if daily fears and occasional tears make me weak or make me human. On the one hand, I pride myself on keeping the faith, but on the other, I know the universe will do what it must. The balance between thinking positive thoughts while remaining ready to handle negatives that inevitably pop up is perhaps my chief personal dilemma. As I supplement my soul-search through blogging, I, too, don’t want to be one who tries to tell others what life is all about. My intention is to share our version of life’s mysteries with honesty and humor in hopes that readers might occasionally smile along 🙂

Posted
August 16, 2016
Category
Cancer, Fear, Happiness, harmony, Pediatric Brain Cancer, Stress Reduction, Wellness
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4 Responses

Port in a Storm

Abram’s chemotherapy graduation shirt couldn’t be more appropriate today. He endured a lengthy, ROUGH and painful port access.

 Accessing the port in his chest is always tricky. During the port placement surgery, the line kinked, and the doctor was forced to set it in a little deeper and at a slightly different angle. Sometimes, that makes for a troublesome access with repeated pokes to find the “sweet spot.” Today was one of those sometimes. With all of the surgeries and treatments and tests the little guy has been through, the port continues to be one of his hardest hurdles.

On a brighter side, we love Lurie Children’s Hospital; they have taken care of Abraham since our terrifying emergency room run in May 2014. The staff is talented, tireless and kind. Today was no different. The skilled nurses dealt with the stubborn port, child life kept the music and jokes coming while I held his little hand.

Currently, Abraham requires extensive monthly labs and a two-hour antibiotic infusion. The infusion causes stomach upset and nausea. He is currently fighting that back, but I can see he’s struggling. My sister is with us, and the little champ is bravely taking care of his business here in the infusion clinic.

Today, I should have been in my 8th grade classroom, sweating in the heat with my fellow staff and 100+ new students beginning the 2016-17 school year. Instead, I am in Chicago while Abraham gets the care he needs. Even as I type these words, I am certain this is where I should be-helping my son get better.

Please keep the positive thoughts headed our way as the day unfolds.

Peace, love and light…

Posted
August 14, 2016
Category
Cancer, Fear, Happiness, harmony, Pediatric Brain Cancer, Positivity, Stress Reduction, Wellness
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6 Responses

The Wall

174

 

Shout out to the teachers ready to begin anew 2016-17 style. May the schoolyear bring growth and wisdom to all you touch.

Abraham saw the above image (from August 2013) for tonight’s blog and commented that he wondered how long it would be until his hair looked that great again. I didn’t have an answer for him.

Also today, Facebook time hopped me to the following image from a year ago when my friend, Lori, shaved around the Babe’s radiated, tender, swollen noggin with its various hardware and scars. Look at that proud posture despite baldness and illness. He’s a champ.

Abraham has been through a lot since that photo was taken. He’s thinner, more tired, and less flexible. In addition, his bones ache, his hearing has deteriorated significantly, and his blood is still trying to recover. I wanted to take a comparative photo in front of the same Rose of Sharon bush, but Abraham’s legs were too tender to walk him there today. Plus, he has a trip to the city for labs and a two-hour IV antibiotic infusion at clinic tomorrow, so I didn’t push.

Instead, we focused on manual dexterity. I started him off by opening the bag, and the rest was all him. He allowed me one peek at the fifth step; and then here, upon completion:


It’s rewarding to follow directions sometimes. Like with Legos. And sometimes, we’re too tired to take a single step. Most days are a little bit of both.

My husband and I try to be decent examples for our sons by showing them how to be patient and kind. I figure, if life is a test and a complex question gets asked, isn’t it easier to answer when an example is shown first? Same concept. We shouldn’t try to tell others how they should “be.” We should instead live our lives as fine examples.

Posted
August 12, 2016
Category
Cancer, Fear, Happiness, harmony, Poetry, Positivity, Stress Reduction, Wellness
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0 Responses

Take it Now

“Poetry is a way of taking life by the throat.” – Robert Frost

In writing, I feel less can definitely be more. But for now, I’m not counting words. Whether you appreciate lyrical style or not, the ability to grab a big idea and hand it over in simple pieces is gold.

One basic caution that must be raised before self discovery can happen is that seizing today by the throat while disregarding the future comes at a cost. The choices we make, or don’t make, affect our tomorrow’s. That is why we cannot wait until the “right time” to work on ourselves. Some won’t be here tomorrow, and they will lose the option to care for themselves and love those around them a little while more.

I’m all about hope, but we can’t simply hope to feel better; we must do the work. Sometimes, we think it’s smart to wait out a life storm until the wind stops or the clouds clear. Unfortunately, there’s no hard guarantee they ever will. It’s smarter to push through the darkness rather than sit in the rain and wonder why we are still getting wet.

My parents are deceased. My sister said to me today that Mom and Dad would be proud of me this week, and that Dad would have forced me to use some of his original poetry in my blog. Smiling at how right she was, I composed these lines in his memory:

THE WELLNESS SEASON

I placed my hope at season’s end

early in the spring.

When winter fell I realized

hope was lost again.

If all the seasons

Were as one

Perhaps then hope could spring

In frozen hearts and barren parts

Of our identities.

Posted
August 11, 2016
Category
Cancer, Fear, Happiness, Pediatric Brain Cancer, Positivity, Wellness
Comments
1 Response

The Power of Fear

“Fear has its use, but cowardice has none.” -Mahatma Gandhi

Yesterday I was scared- repeatedly. But sometimes we need to feel as if all could be lost in order to comprehend that life is valuable. That is the power of fear.

The support for my first blog startled me. I had hoped it would read as genuine, but the responses in support of my writing surpassed my expectations and warmed my soul. The rush of claiming a domain name yesterday was also a fast high. Even though the fear of the unknown is sticky with pain, sometimes  a swift kick of gruesome reality can quickly wake us up.  As a result of a yesterday filled with security breaches, reckless drivers, and new exploits, today I discovered how fear can be “wella-useful.” See what I did there? Wellness remained my goal.

Between flickers of panic at the newness of blogging, and the extreme frustration with unreliable Internet, I am lit by the flashes of excitement that are slowly filling my half-full teacher’s heart. I have talked about publishing a blog for years, and now that I’ve pulled the trigger on its genesis, I can feel my identity returning. You can take the teacher out of the classroom, but the innate call to vocation remains.

Even with deep roots in education, I don’t believe all questions are supposed to be answered. Often, I look to nature to figure out the basics of getting through tough times. For instance, think about the fear response and recovery time of a healthy dog. Obviously a dog’s brain is wired to react when it is attacked, and unless it’s been abused or conditioned in some unnatural way, once the immediate threat has passed, the canine instinct returns to “business as usual” and the fear response ends. I’ve watched my 12-year-old son, Tommy, repeatedly stumble (he’s not quite mastered those long legs yet) over our aging German Shepherd, Ivy, and sometimes, it causes her accidental pain. Seconds later, that same sweet dog can be seen stealing a kiss from him. For people? Our recovery takes longer.

1220  Few people are genuinely dauntless; I know I’m not. I’m afraid at some point every day. But I’ve come to realize that even though not everyone is built to play the fear game, participation is not optional. Fear doesn’t require our consent.

Fear also tends to fester.  If something frightened us to the core, even for a moment, the hesitancy to try again lingers. When humans are scared, pulses rise, eyes dilate, and the body becomes CHARGED. Our instinctive response gets muddied with our humanity, but the basic choice is to retreat or to advance. One difference between humans and wild animals  is how long that feeling of fear lingers in our mind and influences our actions days, months or years after our scare. Last night, Abraham was feeling “off” and had a small headache (don’t worry; he seems better today). My conditioned fear response kicked in, and I had to unknot my stomach as I rinsed supper dishes at the sink. I tried to push away the dread that he could be getting “the big sick” (as Abraham has coined his cancer). I couldn’t control the situation and make his pain go away, but I tried repeating  to myself, “His face looks flushed, I’m sure it’s just a cold.” Eventually, I was able to function again, but the paranoid residue stayed with me. It wasn’t until I turned off the tomorrow “what if’s” and focused on a night of snuggles that I was able to unwind enough to sleep. I doubt dogs with cancer worry about growing sicker. They are too focused on living and playing, and loving their human. We can learn a lot from our pets.

Don’t get me wrong, I know choosing to be brave is not just about facing fears like an animal or tackling demons like a slayer. It’s about recognizing and accepting that the alarm of distress will sound repeatedly in our world; but sometimes, that warning can be a lifesaver.

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