With love, friends. Giant helpings of love.

~MindiTheMagnificent

Momcologist

Not Just for the Military

My reaction to the poem “After Us” by Connie Wanek came as no surprise to me, yet when I shared my impression of the poem, eyebrows were raised at my interpretation. Wanek opens the poem with an epigraph from Swedish poet, Thomas Transtromer: “I don’t know if we’re in the beginning or in the final stage.” I often dwell on this very question. My recent life has taken so many dark twists that never reveal a finite ending or a beginning. Not long ago, the beginnings and endings were clear and well defined. My life was filled with love for my children as they grew and basked in this thing we call living. Wanek’s poem begins with a gentle scene, “Rain is falling through the roof, / And all that prospered under the sun, (1-2)”. There was a time in my life when I felt that my life was prosperous, filled with sunlight and nourished with the falling rain.  As in After Us, every aspect of my life was filled with the rhythmic beat of a normal life. “Then a drop of rain fell (19)”. My youngest child was diagnosed with cancer on February 25, 2009. The last four years have been filled with moments of fear too great to adequately convey in black and white words. The moments continue to fall like rain. These rain drops are triggers, drops that nourish the latent fear and anxiety that eagerly waits in anticipation of revival. These tiny remnants of fear and anxiety bloom with a ferocity equal to my first hearing the words, “Your child has cancer.” Take away the rain-filled imagery and I am left with Post Traumatic Stress Disorder (PTSD).  As if a cancer diagnosis isn’t enough, PTSD occurs regularly among families who have a loved one diagnosed with a life threatening illness.

PTSD is not just for military personnel. Although, entering ‘PTSD’ into a Google image search  and pages of images depicting military personnel amidst suffering will fill your screen, assaulting your heart and mind.. The first indication that this paper was going to be challenging to complete was the limited available information outside the context of military personnel. This did not deter me from finding what was available. My certainty arose from my own personal and frequent experience with PTSD, along with shared emotions within my childhood cancer community. One of the few pediatric cancer specific sources on PTSD offered a glimpse into my reality.

“It has been reported that 68% of mothers and 57% of fathers of children on cancer treatment report cancer-related PTSS within a moderate to severe range [9], and that 44% of parents of children on treatment report cancerrelated PTSD [10]. A lesser percentage, 6% [11] to 25% [12], of parents of children off treatment report cancer-related PTSD. More mothers (30%) than fathers (12%) demonstrate cancer-related lifetime PTSD [13].” (Poder, Ljungman, Essen. 430)

These stark numbers came as no great shock to my acutely aware body and mind. Those of us in similar circumstances network with one another to share the burden of our shell-shocked lives. Exchanging story, after story, of PTSD triggers, events and their emotional fall-out. The ‘T’ in PTSD stands for ‘trauma’. Living through your child’s life threatening illness is a trauma that begins at diagnosis, then continues to invade your senses through the months and/or years of treatment.  A life threatening illness in your child was only recently added to “the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as a qualifying event for post traumatic stress disorder.” (Yalug et al. 27-28). PTSD, as we know it today, has been with us for as long as we have suffered trauma. But it wasn’t until the Vietnam Era that it garnered the attention required for military personnel to obtain therapy and recognition as a mental disorder although then it was referred to as “Post-Vietnam syndrome.” (Satel. 3) There is an eerie similarity between military personnel and parents who have a child diagnosed with cancer: Life threatening. Both of us have looked death in the face, lived to tell about it and survive through its effects.

Even the language we use following a cancer diagnosis, or any life-threatening diagnosis, sounds much like war. Immediately following a cancer diagnosis the ‘fight’ begins. We ‘battle’ with ‘courage’ in an effort to ‘win’ life, versus ‘losing’ through death. Treatment and recovery are often touch-and-go. There are no rule books or sure-fire guarantees in terms of survival or what damage will be left behind if survival occurs. Once the word cancer slips from the doctors lips, all bets are off. The security one had is ripped away in one fell swoop. Everyone buckles down and gets to the work at hand. Destroying cancer before it can destroy the one we love. It is a battle, a war, a scrimmage, a fight. Which even includes all the emotional baggage that comes along for the ride. Once the acute phase of the fight is over and we begin to process what has been happening, the PTSD rears it’s ugly head. The images begin to flash, a need to avoid anything relating to childhood cancer and a hypervigilance that fails to subside. Our bodies continue to believe we are in active war time.

Flashing images. Avoidance. Hypervigilance. These are the “three symptom clusters” (“Post-traumatic Stress Disorder”) that are the diagnostic hallmarks for PTSD. Flashing images are like having a reel-to-reel permanently installed in your mind’s eye. Except the power supply is on the fritz. The tell-tale clacking of the reels can’t be heard all the time. Nor is there a warning when a sudden surge will turn on the projector’s lamp. An image, a sound, a scent. That is the trigger that trips the switch and your entire body is reliving a traumatic moment from the past. This instant movie is also accompanied by a physical reaction. Any combination of a pounding heart, trouble catching your breath or immediate stress sweating. It feels like panic. The avoidance piece of PTSD is what I refer to as ‘checking out’. As a means of self-defense, the body and mind simply do not react at all. Which translates into completely avoiding anything relating to what caused the trauma in the first place. Hypervigilance is where I feel PTSD most acutely. In clinical terms this diagnostic criteria is described as: “hyperarousal, reflected by symptoms such as insomnia, irritability, impaired concentration, hypervigilance and increased startle responses.” (“Post-traumatic Stress Disorder”) Unlike a soldier who has left the battlefield to find himself amidst PTSD, my battlefield is within the body of my child. My battlefield and I live together. My battlefield is the result of love, longing, grace and life.

As I was researching and preparing to write this paper, my battlefield became an active war zone. At least to my mind and body. I experienced one of my hardest PTSD events to date. Taken as a solitary event, it is a minor and manageable health issue. This past week, I learned that Gregory has two extra teeth. They are along for the ride with his top-two front, permanent teeth. While this sounds strange, it is hardly life-threatening, but not to my hypervigilant mind and body. The conversation with his dentist felt exactly as the conversation with Gregory’s oncologist did on February 25, 2009. That reel-to-reel started clacking away, and I was left in the throes of panic, fear and anxiety. Anyone who had not experienced a life-threatening illness with their child would not have had this completely unrealistic response to a minor and manageable health issue. But my experience with Gregory’s cancer diagnosis and treatment provided a fertile ground for a single drop of rain to bloom into moments filled with PTSD triggering events. After acute episodes I often find myself questioning my body’s responses and my relationship with PTSD. I wonder if there is more to my personal experiences that make me more susceptible to experiencing PTSD.

Among the limited amount of research data available, other factors have been shown to influence a parent’s susceptibility to PTSD after their child has been diagnosed with a life threatening disease. “In previous studies, individuals with fewer financial resources were likely to have higher levels of PTSD-like symptoms, as were those with a history of highly stressful life events” (Yalug et al. 36.), which raises the question of whether or not parent’s who experience PTSD are already ripe for the syndrome based on life experiences prior to their child’s diagnosis. While we are not a poverty-stricken family, we do struggle financially to support our family of five. Additionally,  my relationship with my husband has been a significant contributory stress, beginning before our son was diagnosed. The only way to clear this question would be to widen the research. However those who do suffer from PTSD, like myself, are too occupied with barely hanging on, simply trying to survive through each day, crossing our fingers that the next event won’t send us into a panic-filled tailspin. Our hypervigilance is focused on our battlefields, the bodies of our precious children, not on the vast expanse of our own minds and emotions. The very minds and emotions that need to be examined in order to sort through the many questions still unanswered concerning PTSD and the parent’s who live with the triad of flashing images, avoidance and hypervigilance.

Hypervigilance is so thoroughly a part of my moment-to-moment living, that nearly everything I encounter has a connection to cancer, trauma or an impending loss of security. Even a slightly overcast sky will indicate to me that a major storm is imminent. The diffuse clouds are hiding heavy, grey rain clouds, fat with the raindrops that will fall, raindrops that will decimate the fragile sense of survival that I cling to. With each potential threat, I question my ability to get through the moment: “…..And after us, / the rain will cease or it will go on falling, / even upon itself” (Wanek. 21-23). Are these extra teeth a normal developmental blip, or are they the raindrop that will turn into a rainstorm and never stop falling? For now, my mind and body cannot discern the difference. It still thinks it is on the battlefield, waging a war.

I may not have sworn an oath to my country or held an assault rifle in my hands, but a war I did rage. A war against death and destruction. A war in which my enemy resides within the body of my child. I am not a member of the United States Military. I am a Momcologist and I suffer from PTSD. Trauma which began the moment I heard the words: ‘Your child has cancer.’ My child is surviving and thriving these days. I am beginning to find my way back to life’s simple pleasures and to recognize the  magic in the moments, the images conjured in “After us”,  “and of a bowl of eggs, / and lying across the piano / the silver stick of a flute; everything / invented and imagined, / everything whispered and sung,” (Wanek 8-12) My heart, body, mind and soul are aching to revel in the mundane beauty of a bowl of eggs sitting on my kitchen counter.

Works Cited

. “Post-traumatic Stress Disorder.” Encyclopedia of Cognitive Science Hoboken: Wiley,(2005). Credo Reference. 2 Feb. 2010. Web. 24 Apr. 2013

Pöder, Ulrika, Gustaf Ljungman, and Louise von Essen. “Posttraumatic Stress Disorder Among Parents Of Children On Cancer Treatment: A Longitudinal Study.” Psycho-Oncology 17.5 (2008): 430-437. Academic Search Complete. Web. 16 May 2013.

Satel, Sally. “PTSD’s diagnostic trap.” Policy Review 165 (2011): 41+. Opposing Viewpoints in Context. Web. 24 Apr. 2013.

Wanek, Connie. “After Us”. Poetry 180: A Turning Back to Poetry. Ed. Billy Collins.

New York: Random House, 2003. 85. Print

Yalung, Irem, et al. “Posttraumatic Stress Disorder And Risk Factors In Parents Of Children With A Cancer Diagnosis.” Pediatric Hematology & Oncology 25.1 (2008): 27-38. Academic Search Complete. Web. 16 Apr. 2013.

I get to hug and kiss Gregory tomorrow.

Research has made that possible for us.

Not the case for too many families.

Childhood cancer remains the number one cause of death by disease in our kids.

Help me fund research for tomorrows kids. I am a 46 Momma and I fundraise for St Baldrick’s foundation.

In honor of Mother’s Day I am hold a raffle for a hand knit item. Knit by me. Yes, I am a mad Knitter. For every $5- donated, you will receive an entry into the raffle.

Donations are made to my St Baldrick’s participant page. Simply click on this link —> Mindi Finch ’13

Doesn’t every family deserve moments like this?? Gregory, dancing his hiney off last week.

Gregory will draw a winner 9pm PDT on Mother’s Day.

Every single day; In honor, in memory, in defense.

Beginning with the first day of school, every year, the Lower El kids learn about timelines through stories. Stories that explain all different events that make us who we are and how we came to be where we are today. Once the idea is firmly planted, the kids get to bring pictures of themselves to school and write a bit of a story about that time in their life. They can choose any time frame, though typically it’s one for each year of their life. This is the beginning of their Timeline of Life.

Gregory has needed his pictures for quite sometime, now. I have been dreading the act of sitting down with him to pick out one picture from each year of his life. The years he was sick and his body was fighting like hell to keep his organs and his new marrow. Then there are the years before cancer. The emotions attached to those years are weird. Looking back on them I want to feel like I should have had a premonition. I look through those photos looking for signs. Just so you know…… I never find them. There are not any to be found.

At Gregory’s age of 7, I get to fill in the memories from past years. He does remember somethings from more recent years, but anything beyond 3 is pretty much up to me to let him know what was going on. Guess what? I can’t access those memories. Not without a solid representation of something in an image or someone else around me who remembers moments. I look at some of those images before cancer and wonder…. what the hell was going on there! Despite the fact that I can look at any one of Curtis or AnnMare’s  pictures from past years and remember exactly what was going on. Gregory before cancer is a complete blur.

He and I finally sat down and picked out eight pictures last night. His Timeline of Life was inspired by a memory from Christmas. Katie, his bone marrow donor, sent him a telescope for Christmas. He was so freaking excited about it that we immediately put it together and tried it out in the snow. Along with the snapping shutter of my cell phone. This is the memory and image he wanted to build his timeline from. Which translated into finding pictures of Gregory from the month of December, every year that he has been alive.

I am excited to see what Gregory’s timeline will look like and how he will articulate what he remembers and what I have shared with him about the pictures from his younger years. For posterity I have shared the images below along with description of my own. I really should do this with each kid. Alas, I do not have digital images prior to 2002. Curtis would have several years not represented. Still might do it, anyway.

Gregory’s Timeline of Life. Through my eyes.

December 2005 – Six months old. Not many pictures for this month and a select few of Gregory.  Seriously. Three OffSpring under the age of 7. Enough said.

December 2006 – 18 months  This kid! He enjoys strong coffee and stout beer! A kid after my own heart.

December 2007 – 2 years, 6 months Christmas pajamas and Christmas presents. A PBS programming inspired computer game. Remember those? When our kids actually played on a PC?

December 2008 – 3 years, 6 months              The last December before cancer. Until recently this spot of kitchen counter has been Gregory’s spot. He has LONG been my shadow. Making chocolate chip cookie bars for Santa Clause.

December 2009 – 4 years, 6 months             Yep. Christmas 2009 Gregory was inpatient. He had just had his G Tube placed. Little did we know that we wouldn’t be comfortable out of the hospital until Valentine’s Day.

December 2010 – 5 years, 6 months              Our first American Childhood Cancer Organization reunion party. Our first big outing where there was a sense of security. Kid was still on steroids, though.

December 2011 – 6 years, 6 months      Another December in the hospital. This time, outpatient clinic. *whew*
Although, it is another December with very few pictures.

December 2012              7 years, 6 months     The telescope. The excitement. The flourishing of a Montessori kid.

]]> http://mindithemagnificent.com/2013/04/16/timeline-of-life/feed/ 2 MindiTheMagnificent You spooked me, Ma! More! I want MORE! Clifford, Dragon Tales, How much flour can I get on myself? December 2009, 4 years, 6 months December 2010 - 5 years, 6 months December 2011 - 6 years, 6 months December 2012 - 7 years, 6 months http://mindithemagnificent.com/2013/04/16/timeline-of-life/ http://feedproxy.google.com/~r/Mindithemagnificent/~3/OBHMo0Xhhfc/ http://mindithemagnificent.com/2013/04/15/i-do-believe-in-hope/#comments Tue, 16 Apr 2013 04:58:59 +0000 Mindi Finch http://mindithemagnificent.com/?p=652 Continue reading →]]> I wish I could show you how this back-to-school thing feels. I wish I could share this feeling with you. Mainline it to your heart. 

My first assignment for my English Comp class was to write a narrative essay inspired by a poem we selected from Poetry 180: A Turning back to poetry. This was my first foray into writing to conventions. Creating a story arc. Ensuring that the language was descriptive. The concept of a thesis. First attempt at MLA. 

I’ve decided to share it. I am incredibly grateful to have an instructor who allows us to revise and receive a new score, once our papers have been initially scored. To me, this means that I get to learn, grow and apply that much more of the concepts. 

First the poem that inspired the narrative essay that follows:

Singing Back the World

I don’t remember how it began.
The singing.  Judy at the wheel
in the middle of Sentimental Journey.
The side of her face glowing.
Her full lips moving.  Beyond her shoulder
the little houses sliding by.
And Geri.  Her frizzy hair tumbling
in the wind wing’s breeze, fumbling
with the words.  All of us singing
as loud as we can. Off key.
Not even a semblance of harmony.
Driving home in a blue Comet singing
I’ll Be Seeing You and Love Is a Rose.
The love songs of war.  The war songs
of love.  Mixing up verses, eras, words.
Songs from stupid musicals.
Coming in strong on the easy refrains.
Straining our middle aged voices
trying to reach impossible notes,
reconstruct forgotten phrases.
Cole Porter’s Anything Goes.
Shamelessly la la la-ing
whole sections.  Forgetting
the rent, the kids, the men,
the other woman.  The sad goodbye.
The whole of childhood.  Forgetting
the lost dog.  Polio.  The grey planes
pregnant with bombs.  Fields
of white headstones.  All of it gone
as we struggle to remember
the words.  One of us picking up
where the others leave off.  Intent
on the song.  Forgetting our bodies,
their pitiful limbs, their heaviness.
Nothing but three throats
beating back the world – Laurie’s
radiation treatments.  The scars
on Christina’s arms.  Kim’s brother.
Molly’s grandfather.  Jane’s sister.
Singing to the telephone poles
skimming by.  Stoplights
blooming green.  The road,
a glassy black river edged
with brilliant gilded weeds.  The car
as immense boat cutting the air
into blue angelic plumes.  Singing
Blue Moon and Paper Moon
and Mack the Knife, and Nobody Knows
the Trouble I’ve Seen.

by Dorianne Lux

*************************************************************************************************

Head + Heart

Earworms. Those bits of music and lyrics that worm their way into your ear, then tunnel through your brain on an endless loop. In the poem “Singing Back the World” by Dorianne Laux, a small group of longtime friends find themselves cruising along a highway. Judy breaks out in music and lyrics. Sentimental Journey Life is indeed a sentimental journey. Through music and lyrics these women rejoice, remember, grieve and forget. A lifetime of emotions, shared and expressed through the primal and visceral medium of music and lyrics. At first mention of an earworm, an annoying little tune immediately jumps into your brain. For the next several moments you can’t get it out of your head. You will eagerly seek out something to break the cycle. What if these mind numbing tunes, normally like nails on a chalkboard, became a salve to your soul? An earworm that becomes a mantra, a touchstone, a glimmer of hope and an affirmation.

2009 was to be my year of change. Obama was sworn into office and change was sweeping the hearts of our nation. I had taken the first fragile steps on my way to significant ch-ch-changes. Little did I know what The Universe had up her sleeve for me. I am mom to three OffSpring.  All my life my only solid goal was to be a mom. My last child arrived June 2005. Upon exiting the womb and finding himself in my arms, the newest of my OffSpring gazed up at me with an expression one might find on an aged Buddhist monk. His body oozed serenity while his eyes sparkled with wisdom. This tiny spirit came to be known as Gregory.

Being the youngest of three OffSpring, Gregory was exposed to and came down with all kinds of respiratory illnesses. AKA: common head colds. Considering how much he was exposed to with two older siblings, I never gave much thought to the frequency or severity of these illnesses. With each illness, fierce fevers would be followed by a week or so of coughing, a runny nose and sneezing. At 20 months old, we did have an unusual five day stay in the hospital when Gregory acquired Rotavirus, a gastrointestinal illness that results in severe dehydration. A few days of gut rest with IV fluids allowed his body to correct itself. So far, so good. When you are a parent you expect to have at least one hospital admit with your kids. I finally had mine with the third kid. Life quickly returned to the crazy, joyous and raucous chaos that we have always embraced.

Enter February 2009. A time that is frozen in my core. Gregory, once again, had a head cold. This time it lingered longer than I was comfortable with and it was joined by two symptoms that struck terror in my heart from his time spent inpatient with Rotavirus. Dehydration and lethargy. After a trip to his pediatrician, an afternoon in the ER and 48 hours in the hospital, I heard the words no parent ever thinks they would hear: “Your child has cancer.” My world was shattered with that brief four word sentence. My wise, light-filled and charming little three year old had cancer and would be enduring a treatment that kills 50% of the people who receive it. Gregory needed a bone marrow transplant. His only hope at survival and he needed it STAT. From this point forward we started livin’ on a prayer.

As we started to endure this process, I wrote, Facebook’d, networked and found the childhood cancer community. Underpinning all this work, grief, fear, anxiety and tiny brilliantly-lit moments of joy, my spirit was echoed through music and lyrics. A sweep of my fingers across the keyboard allowed me to convey how things were in that moment, to family, friends and my expanding childhood cancer community at large. Without revealing the exact thoughts in my brain, I could express, work through and cope with the raging emotions in my heart through a few lines of lyrics.

Gregory treatment progressed and we found ourselves in Seattle, Washington at Seattle Children’s Hospital, beginning the arduous odyssey in an attempt to save his life. The idea of hope has always been a struggle for me. Without consciously acknowledging the idea of hope, my brain tentatively searched for a whisper of a future that included my youngest child. Gregory’s treatment would take him to the brink of death. His body would be pummeled with high-dose chemotherapy over a six day time frame in order to destroy every remaining cell of his existing bone marrow. His leukemia is genetically hard-wired into the DNA of his marrow. Complete annihilation was the goal. Only an infusion of donor bone marrow stem cells offered a glimmer hope that would allow his body and spirit to stay with us for longer than his disease had proclaimed. These dire circumstances forced me to find hope through hoping for hope.

Family and friends, who understandably had no concept of what we were actually enduring, kept insisting that Gregory was going to be all right. It was the only way many could cope with the fears I was facing. Offering a societal platitude that did nothing to assuage my fear and anxiety, yet gave them a tool to confront our reality while protecting their own hearts. This sentiment wormed it’s way through my heart, traveled to my brain and sought out a connection that would link my emotions and my thoughts in a way that would give me permission to hope. This connection revealed itself as an earworm. Every time someone would utter this idea, my head would default to Bob Marley’s lyrics in Three Little Birds: “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.

These hopeful and free words echoed through my brain during every chemo infusion. Through every acceleration in his body temperature. Through every moment when Gregory’s gut rebelled and tried to heave up the non-existent contents of his belly. Through every time I glanced at his shockingly beautiful bald head. Through every spasm of pain that erased the glimmer from his eyes. Through the days, weeks and months that his body rebelled the brutality of our attempt to save his life.

 “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.

Today, we are four years out from that fateful day I heard those bone chilling words: “Your child has cancer” Within this span of time music and lyrics have continuously and faithfully been my boon companion. Like the women in “Singing Back the World” I find  my life filled with solace, joy, remembrance and grief. Through events that bring thoughts, which trigger emotions, earworms have cradled my spirit. Allowing me to cope with the trajectory of my path that The Universe has placed me on. Ironically, every little thing is all right. They are exactly what they are meant to be. As with any traumatic event, I often find  myself slipping into fear and anxiety more frequently than I would like to admit. During those times not only do I let those emotions have their head, but I plunge my catalog of earworms and remind myself: “Don’t worry ‘bout a thing / every little thing gonna be all right.”

Works Cited

Bob Marley & The Wailers, “Three Little Birds.” Exodus. Tuff Gong, 1977

Bon Jovi, “Livin’ On a Prayer.” Slippery When Wet. Mercury Records, 1986

Bowie, David. “Changes.” Hunky Dory. RCA Records, 1972

Laux, Dorianne. “Singing Back the World.” Poetry 180: A Turning Back to Poetry. Ed. Billy Collins. New York: Random House, 2003. 6. Print

AnnMarie and I both fundraise for St Baldrick’s Foundation. As was the case for 2012, we both received our copies of their annual report in yesterday’s mail. I stay current on St B’s goings on so I did not peel it open immediately upon arrival. AnnMarie? She had that puppy open as soon as she laid her hands on it. In order to help me with dinner and read her report, she propped it up against the microwave and went to work grating the cheese.

As she is diligently grating her cheese, she is applying the same concentration to absorbing the information in front of her. Very little of what she is reading is new to her. These are topics we have discussed on numerous occasions. Yet, she is receiving the information via the foundation she helped to raise money for. She is vested in being an informed charity ‘consumer’, for lack of a better word. She stops mid-stroke with the cheese, looks me straight in the eye and states: “Mommy. I wonder how long Gregory will survive.” You see, she had just read the sobering statistic that childhood cancer survivors have a greatly diminished quality of life and life-span.

What is important to note is that these conversations occur all the time. They are not hidden away during secret moments out of everyone’s ear shot. The conversations revolve around the research and results of kiddos around us. Those that came before kids like Gregory. So while we have statistical information, we always address the fact that we just don’t know what Gregory’s future will hold. We know what he is at a greater risk for, but we don’t know if/when these things will happen.

Tonight at the dinner table, she is still poring over that report. This idea that treatment can cause death and destruction to a developing body is baffling to her. Tonight it was: “WHY would you go through treatment, knowing how awful it is.” It was then my turn to let her know that we don’t have a choice. The only alternative is certain death. I asked her: “Can you imagine what would have happened Gregory not been treated?” The look on her face spoke volumes. It clicked. She understood the quandary of ‘Damned if you do. Damned if you don’t.’

Meanwhile, Gregory is bopping around doing his thing. Interjecting with reflective thoughts of his own. Along with an abundance of hugs, kisses and ‘I love you’s. for me. He is beginning to have just a hint of understanding about his Odyssey. I think last night really started the wheels moving and he had a glimmer of realization over how amazing it is that he is surviving.

Curtis also offered a choice bit of reflection, too. “Remember when all we used to worry about were bee stings, bruises and such?”

Oh, kid. I remember. Vaguely. Most of the time? I don’t remember what parenthood was like before cancer.

One honest and frank conversation at a time.

~MindiTheMagnificent

“What is uttered from the heart alone, will win the hearts of others to your own.” 

Johann Wolfgang von Goethe

It’s not that I don’t have time. I have discovered that I have much more time than I ever thought I would have at my disposal. In fact, I have 24 hours. Everyday. 24 hours to use as I choose. It’s in my choosing that the content has shifted. Which includes small talk. I find myself wanting every last moment to have meaning. I want walk away from each encounter having exchanged something that leaves an impression. If that is not possible, if I don’t have the energy, I will keep my trap closed. Yes. This talkaholic has curbed her tongue. 

At the beginning of January, I went back to school. For now, I am doing damage control. I spent three quarters at one of our local community colleges, 23 years ago. I tanked it. I walked away with a GPA of 1.19. Yet, I was well on my way to obtaining my Mrs. degree. (That’s a story for another time.) Today, I am pursuing my BSN (Bachelor of Science & Nursing), which is a very competitive program. I am in the process of repeating everything I took 23 years ago. It’s been the perfect exercise in learning to be a student. It’s also been an invaluable lesson for my OffSpring. Go to college when you are ready. When you do go, get serious.

These first few classes are my first real foray into ‘society’ since Gregory’s diagnosis in February of 2009. I contribute to class discussions and answer questions. Yet, I keep to myself. When I do share something about why I am in class or what my goal is……. that’s when I start to feel a little weird. I haven’t discovered the least awkward way to offer the story that I have to tell. I’ve started to refer to it as ‘ripping off the band-aid’. I blurt out the highlights in a torrent of words: “InJuneof2009myyoungestwasdiagnosedwithcancer. Heisthreeandahalfyearspostbonemarrowtransplant. Heiscurrently7andahalfyearsold. Iwanttoworkwithfamilieslikeoursinahospitalsetting.” I watch for the response. I gauge where the conversation needs to go from there. 

No matter what I do or where I go, I feel different. Other. I feel like I see life through completely different lenses than anyone else. I’m not yet comfortable with this feeling. Life spins and whirls around me and a very large portion of it I don’t even give it a second thought. I could care less what clothes are in fashion. It does not matter to me what TV shows are hot. Talking about the weather is not going to change it. 

My family is surviving childhood cancer. We are trying to thrive. I am trying to live a life of conscious mindfulness. Every little thing that I do, has an effect on everything and everyone. Man, that’s too much pressure, sometimes. 

Today at the grocery store, the check-out clerk started in with the small talk. ‘How’s your day going today?’ As is my current modus operandi, I paused, looked him straight in the eye and told him how grateful I was to be grocery shopping. It set him back a moment. Yet, he took the moment and asked me: ‘Why?’ So I told him. My son is a childhood cancer survivor and I ‘get’ to enjoy grocery shopping. That’s when the conversation truly shifted and he had a chance to spread some of his burden. A year ago, his mom was diagnosed with Renal Cell Carcinoma. She lives on the other side of the state. So far she is surviving. He didn’t need to say the words, but this kid is scared for his mom. Just below the exterior of his still pimple-faced smile, he is scared. Our short interaction allowed a bit of that fear to escape. 

We all have stories that need to be heard. Vowing to be better about sharing my stories.

Tell me yours.

Always, with boundless love.

~MindiTheMagnificent

Heroes in real life aren’t like the ones you read about in comics. Heroes in real life don’t have super powers, and instead they help people by being police officers or firemen  My little brother went through treatment for a very rare kind of leukemia called JMML. Through this treatment he displayed strength, bravery, and optimism in nearly every possible way. In my life, my brother is my hero.

Although my little brother is young, he is very strong, has desplayed it many times, and is not weak. My brother is very strong. He went through a lot of pain and still had the strength to say cheerfully “Hi Curtis!” I don’t know what I would do without him. For example, my brother had chemicals pumped into him and and night for a year and fought through the suffering to stay alive. My brother is not weak. He did not give up when death loomed over him. He practically said “No Death! I will not go into your unforgiving arms! I love my family and you can never know what that is like!” clearly, my brother is very strong.

Since my brother went through so much pain, he has bravery, is very prominent about it, and he is not paranoid. My brother is very brave. He went through a lot of pain and agony during his treatment, including the doctors using many syringes on him, which he used to be deathly afraid of. For example, my brother was so brave that one time he had five shots and didn’t even flinch. Afterwards he said, “That wasn’t so bad” and fell asleep. My brother is not paranoid. He is very relaxed and is really only scared of the dark. Just like I was when I was his age. Clearly, my brother is very brave.

Becasue my brother went through his treatment, he has become very optimistic, enjoys pronouncing it to the world, and he is not pessimistic. My brother is very optimistic. He always has a bright outlook on the world, and he always tries to help if something is wrong within my family or at school. For this reason he has helped my family when nearly all of us are mad about something stupid like who didn’t replace the butter. For example, one time when I got home I was sort of mad because of somebody at school. My little brother wanted to know so I told him and he stated singing “Bright Side of Life” by Monty Python and it made me happy. My brother is not pessimistic. He is always happy and cheerful, and he never thinks anything bad is going to happen. Clearly, my little brother is very optimistic.

My brother is a hero in my eyes. during his treatment my brother displayed strength, bravery, and a whole lot of optimism. My brother went through treatment for a rare from of leukemia known as JMML. This event showed me that not all heroes have super powers.

Not long after dropping off The OffSpring at school yesterday, I get a phone call from the school nurse at Gregory and AnnMarie’s school. She and I have a long history and I love receiving calls from her. Yesterday was different.

She was calling to give me a heads up. Over the Thanksgiving weekend, one of the kiddos in a neighboring classroom to Gregory had Scarlet Fever. What happened next still leaves me reeling. I had an overwhelming and visceral response to this perceived threat to Gregory’s health. A metric ton of adrenaline dumped into my blood stream. My brain zeroed in, found the checklist in my database and went to work.

• How close is the threat?
• Check in with oncology.
• What were his last counts?
• How recently was his body under stress?
• How did he look/behave this morning?
• Will this child have infected any other students?
• Look up Scarlet Fever.
• How does it present?
• What are the symptoms?
• Is his pediatrician prepared to treat Gregory aggressively enough for his unique situation?
• If he does develop Scarlet Fever, is an admit imminent? 
• Who will care for the other kiddos if we are admitted?
• How in the H-E-DOUBLE HOCKEY STICKS am I going to handle something like this while going to school, myself?
• Don’t panic. Get information. Breathe. Exhale.

Hello, darling. It’s late at night, on a Monday in November, 2012. You are slumbering away, in what I hope, are sweet and peace filled dreams. I am just now, finding space in my heart to devote words, now and again, to nothing but you. I had intended on writing to you in this fashion, from the time that you were born. I originally started with old fashioned pen and paper. That was so very short lived. I have a tendency to freeze on paper. Life became busy, Gregory arrived and live became chaotic.

Then in February, just two weeks after your seventh birthday, Gregory was diagnosed with cancer. This you already know and feel oh so acutely. It was at this point that I all but abandoned you. My physical and emotional presence in your life ceased to exist, for quite some time. It is now nearly four years since then and I am just now trying to find my way back to you. It’s not been easy.

Over the years, I am hopeful that we will be able to have frank conversations about what has passed and how it still affects our relationship and the woman you will one day become. I struggle with connecting with you. You need and deserve so much more than I find myself able to offer to you. I struggle with being the mom you want me to be and being the mom that I am. I sometimes feel like I fall so terribly short in your expectations.

You have a gigantic heart and free flowing, lofty dreams. I want to feed your heart and soul, but still keep you a bit grounded. There is plenty of my own baggage that comes along for the ride in our interactions. I want you to be a woman who is strong, confident, independent, loving, open, practical, with a touch of big dreams. Someone who not only follows her heart, but listens to it in the quiet moments. A woman who is not afraid to look herself in the mirror and say to her reflection: “I love you.”

I wonder how the last four years have hindered that development. I wonder how I can show you that I love you. I wonder how I can offer you the security that you so desperately seek. Seven years old is such a tender age to be abandoned by your mother. It is such a young age to have your touchstone yanked from your life. Especially in a situation that pulls her to focusing 100% on your little brother.

At the risk of sounding harsh and unfeeling, I will tell you this: It was the only choice I could make. Given the same circumstance to repeat, I’d make the same choice. Even with the knowledge of hind-sight. Harsh, I know. It was not a choice that I had to ponder, either. It was visceral and innate. Gregory was facing death. You were alive and healthy. You had Daddy, Nana and Papa. Not to mention our extended Montessori community. While they are not a replacement for your mom, they were there for you in ways I could not be.

My heart and my head reasoned it through. It was better for our family for me to focus 100% on Gregory for a short time. Offering him the BEST opportunity to survive and recover. Versus a lifetime of the four of us living without him. It may not have been logical. I would like to think that my singularly focused attention to Gregory did help in his survival. The truth is, I don’t know. I’m beginning to think that this way of thinking was my way of bargaining and appeasing my own guilt at having to leave you. Pleading with The Universe that if I sacrifice my relationship with you and Curtis, then we might get a chance to keep Gregory a little longer. I don’t know, sweetheart. I can’t look back with regret or question the decision that were made. In fact, I don’t.

My biggest overriding feeling when it comes to you, is an ache tinged with grief over what we missed out on together. Half of first grade, all of second grade,a large part of third grade, most of fourth grade and now, you are in the fifth grade and I am beginning to find my way back to you.

I’m hopeful that by writing to you like this, I will also be able to talk to you now. I’m hopeful that it will enable me to be a stronger presence in your current moments. I cannot undo the past. Yet it is there between us. I can only support you now and be there for you when your heart crosses places that hurt.

When I pictured my family, I had always imagined having just one daughter. You. You are that one daughter I always wished for. Today, I only wish that the years had been easier for us. They weren’t, though. We were handed this really crappy and hateful thing called childhood cancer. You suffered right along with Gregory. You and I will get through this.

Five minutes at a time.

I love you, young lady. With the fire of a million burning suns.
~Mommy

Gregory had an appointment today to have two of his upper teeth pulled, to make room for his front two adult teeth. The last time he had a procedure at the dentist it did not go very well. I’m hesitant to admit that the dentist actually made me feel a bit small and belittled Gregory a bit. Maybe we were overly sensitive at that point in time. Maybe what we have been through just plain makes us sensitive to certain things. This experience, combined with Gregory’s history, contributed to a bit of PTSD today. For both of us.

As Gregory was climbing into the dental chair, the panic, fear and anxiety started to settle in. Thankfully the assistant today was perfection. She did her best to calm Gregory, but I knew he just needed me close. I did what I do best. I climbed right up into that chair, straddled it backwards, stroked his legs and feet, simply offering my presence. As they were applying the nose piece for his ‘Happy Gas’ I could see thoughts flit across his face. He asked about ‘Sleepy Medicine’. Having been sedated only three weeks prior, things were awfully close to the surface. We assured him that today he would not need Sleepy Medicine, just Happy Gas to help him relax. Once the nose piece was settled, he started to cry and bravely wiped away his quiet tears. Taking deep breaths to calm himself. At this point there really is not much I could do to help him. I just have to let him work it out. Which he did, though it did linger for the rest of the day.

This patient and compassionate dental assistant was also in the OR on March 25, 2009 when Gregory had his pre-transplant dental work done. He had eight crowns and four caps placed that day. This protective placement of caps was THE BEST thing we could have ever done for Gregory’s mouth health. As she was walking us back to the procedure area today, she confessed to having cleaned my teeth when I was small. It was a day of full circle memories.

The Happy Gas kicked in and he started chatting between the ministrations of the dental assistants. The numbing in affect, Dr Dentist arrived and gently removed the two teeth. Long roots and all. It was actually quite amazing to watch him perform the task. He was gentle and firm in the handling of those teeth within Gregory’s jaw. After a few minutes it was time for us to go. Gregory picked out his prize and we left the procedure area. We gathered our coats and headed out the door.

Not being too sure about the expiration date on my Tylenol at home, we stopped at the store. As were were walking toward the store, Gregory had his little hand in mine. There was something so startling crystal clear in that moment. His sweet little hand felt to tiny in mine. Tiny, warm and secure. As I looked down at him, I had a wave of ‘Don’t forget this moment!’. This moment where we were both silently and subconsciously supporting and comforting one another. We were feeling reverberations of shared trauma. His upper lip was terribly numb and he was quietly talking with me about random observations. I couldn’t tell you what they were. Only that his tone was very tender. A tone I’ve only heard him use with me during times of intense emotions. We were both feeling the past and the present.

He feels so very small to me today. I can’t help but wonder what races through his mind during times like today. He was so terribly young during active treatment and his immediate recovery. So young to have to experience what he had to endure in order to have a chance at survival. Those memories and feelings lie dormant. Too young to process them and too young to really remember the details. Yet…….. some part of him remembers. I witnessed it happen today, clear as day. So I continue to be his touchstone. The one to keep him grounded and secure.

What he doesn’t realize is that he does that for me, too. If I begin to have a moment of selfish, silly anger, judgement, jealousy, pity or you name it, I spend a millisecond holding the wonderment of his survival in my mind’s eye and nothing else matters. At this moment he is sleeping beside me. He still does not sleep alone. He will only fall asleep with me at his side. Selfishly, I’m not ready to give up this little luxury. There will come a day when he will not want to sleep next to his Mommy. Probably about the same time he quits calling me ‘Mommy’.

For now, I will take what is offered and try to engrave these moments into my rememory. The little hand in mine, the cuddling next to me, the wanting to be close together, the sweet kisses and perfect squeezes. These things have been hard won. I’m not about to squander what’s right in front of me.

Crying, AGAIN and thankful.
~MindiTheMagnificent
Momcologist