Gregory did a little somethin’, somethin’.

The OffSpring and I recently went on a whirlwind 3+ week RV trip with my parents. We left Spokane, Washington and headed to Yellowstone, Devils Tower, Mount Rushmore, Denver, Colorado, and all points between.

While in Denver, we took an opportunity to visit Red Rocks Amphitheater.

July 8, 2014

July 8, 2014

We went to a Film On The Rocks night. The movie showing that night was Catching Fire.

July 8, 2014

July 8, 2014

As it turned out, we were fortunate to get tickets. It was a sold out show, with nearly 9,000 people in attendance.

July 8, 2014

July 8, 2014

My dad and I entered the venue from one entrance, Mom, Curtis, Gregory, and AnnMarie from another. As my dad and I entered the venue, there was a booth set up along the stairs. I immediately recognized what was going on. They were swabbing potential bone marrow donors. The organization was Love Hope Strength Foundation (@LHSF) and they are partnered with Delete Blood Cancer. Love Hope Strength is an amazing foundation that tours with musical groups and inspires people at concerts to #GetOnTheList. They are based out of Denver, Colorado.

It’s not often that I run across a bone marrow donor drive. They just don’t happen that frequently. I was giddy. You see, Gregory was with us. I could share our story with them, introduce Gregory, and hopefully inspire the volunteers to keep doing what they do. Letting them know that the work they do is vital and has a significant impact on people’s lives. Gregory was across the venue, so I jumped in and introduced myself. Well, actually I just blurted out, “My son is a Delete Blood Cancer recipient and SURVIVOR!” This is where the chaos and synchronicity blossomed.

They were jacked to meet Gregory. I met Rob Rushing, tour manager for Love Hope Strength. He was practically jumping out of his shoes. They all were. He asked me if Gregory would want to go on stage before the flick, when they told the audience who they were and what they were doing. I said sure, but would need to check with Gregory.

Gregory has been terribly shy and felt awkward in this limelight that he has been thrust under by his mom. He has watched me do some crazy stuff in the spirit of advocacy, awareness, and sharing our story. As he has aged over the last five years, he is learning what his diagnosis with cancer and his treatment mean to him. It is constantly changing as he works on figuring it all out. Sounds like something we all do, right?

When I presented the request to him, he got excited. Really excited. In a way I have not seen in him before. I have never talked about what his advocacy should look like. I have never even suggested that he should advocate. Yet, he has been listening and absorbing the craziness that is his mom. He immediately wanted to head down to the Love Hope Strength tent and just hang with them. There were a couple acts before the flick started and Gregory’s appearance on stage. He met everyone at the tent and they graciously gave him a rockin’ green LHSF t-shirt, along with our wristbands for backstage.

Rob asked Gregory is he wanted to say a few words to the audience while on stage. To my utter amazement, Gregory said yes. With zero prompting or coaching from me. Whatever he chose to say was to be all his words. It seemed like forever for our time onstage to arrive. When it finally did, we headed back there and hung out for a bit, waiting for them to breakdown equipment from the previous band. While there, Rob snapped a couple phone shots of Gregory on the rocks backstage. Apparently this is hallowed ground. It’s fuzzy, but I don’t care.

RedRocksLoveHopeStrengthGetOnTheList

 

Then it was time. We walked out on stage, Rob did his thing and so did Gregory. AnnMarie caught the moment from the audience. The quality, once again, isn’t great, but she got it.

Freaking amazing, huh? Right after this, we went up to the LHSF tent and Gregory swabbed potential bone marrow donors. Yep. My kid CLAIMED his story and advocacy that night. To say the night was magical is a huge understatement.

https://www.facebook.com/PaulMaynardPhotography

Image courtesy of Paul Maynard Photograhy

The moon even offered us her magic.

By The Light of the Silvery MoonTo think that all we were doing was celebrating FIVE years of thrivorship and a ninth birthday. These moments just happen. The secret is to see them and jump in with both feet.

NINE!!

Thriving

Thriving

Nearly two weeks later and I am still soaring from this night.

With a spirit filled with magic, synchronicity and love,

MindiTheMagnificent (Gregory, too.)

 

 

Posted in Childhood Cancer | Leave a comment

An Unexpected Guest

All right. All right! ALL RIGHT! Universe, I hear you. I am angry. Are you happy?

Oh, anger. I don’t like you. I don’t want to acknowledge you, I don’t want you to be part of my spirit, I don’t want to be anywhere near you. Yet, I have to acknowledge you, let you in, and cuddle up next to you.

Gregory was diagnosed with cancer just over five years ago. He was 3 years, 8 months. From that moment forward it was getting through to the next moment. Loving the crap out of each other along the way. I never saw the value of being angry at his diagnosis or the chaos that our lives were thrown into. It was a wasted emotion that could not serve any part of our odyssey. Yes, some will argue that anger does serve a purpose, but it does not serve my purpose or spirit. It leaves me wrung out and agitated. I would much rather bath in love. Which I have done, until the last several months.

I went back to school January 2013. I am now in my fifth quarter and pursuing a Bachelors of Science and Nursing (BSN). This was the beginning of my re-entry into ‘the real world’. The world where life does not revolve around childhood cancer. It’s been an amazing experience and it has been challenging in ways I did not expect. At the same time, I became part of a group of women devoted to being vulnerable and gathering in the spirit of what is. We call ourselves Full Moon Goddesses. FMGs for short. We gather once a month, around the full moon. We have created a diverse community of women who support, love, honor, educated, grow, and enrich each others’ lives. Yet, this is a group that has been expanding and I find myself surrounded with women who know nearly nothing about Gregory and the last five years of my life.

Several months ago, a few of us found ourselves at a local restaurant having coffee on a weekday morning. This is a place where I used to gather with girlfriends, every Friday morning, prior to Gregory’s diagnosis. The days when my kids were still tiny, healthy, and ‘normal’. As we sat there drinking coffee a large group of moms sat down at the next table over. They were in various states of new motherhood. A couple were pregnant and there was a passel of kids under the age of three. They were stylishly dressed, make-up’d, and coiffed. I was triggered. The anxiety descended, my pits started sweating, I could not focus, my eyes began darting all over the place, unable to settle. I wrote it off to my perspective as mom to a childhood cancer survivor. What do those women know about life in their perfectly dressed and adorned selves? They have no idea how good they’ve got it and someday life is going to let them know! *big deep breath* Little did I know.

Since then, I have found myself unable to be around small kids Any kiddo under the age of four. I don’t want to interact with them or their precious moms. I have told myself that I am capital-D-O-N-E with that stage and am grateful I can’t have any more kids. I have zero desire to be supportive of friends with wee ones. Kept everyone at arms distance and let other people help them navigate those waters.

At our April FMG gathering we had a truckload of littles. All under the age of four. I avoided them like the plague. Them and their mothers. I crawled into my anxiety and welcomed the panic like an old friend.

Then it dawned on me. I am filled with anger at cancer. I am starting to process some shite I don’t want to admit is in my heart. Then I got angry at being angry! Seriously. I can’t be angry. I loathe angry! I don’t have time or room to be angry! Which only exponentially increased my anger. In my anger and trying to find my way out, STAT, a dear friend sent me this:

Anger is also a form of alchemy. It’s transformative – it’s hot and burning and has the ability to melt, to re-form and even more so, it has a profound opportunity for release and for expansion. Anger has the potential to fire through the outer layers of our emotions and, if we allow it to, it will reveal a layer of a somewhat softer, calmer texture. A texture of remembrance, of guilt, of shame, of the inability to forgive, of stored trauma, of deep sadness… of hurt. - rebellesociety.com

I’m letting the anger in. Not only am I letting it in, I am taking my own best advice and surrendering to it. I have to, if I want to heal. Except I could only begin to allow this to happen if I knew why I was angry. I had to admit to the why. I had to surrender to the loss I feel in my soul. Here’s the deal; I don’t remember Gregory’s years before cancer with the clarity that I can recall post-diagnosis. I don’t remember Gregory’s years before cancer with the soft nostalgia that I have for Curtis and AnnMarie’s pre-four-year-old years. Cancer stole that from me. Cancer ripped the softness of that time in our lives. Cancer arrested our lives at 3 years, 8 months of age. We have no less than three years of suspended life. Being around littles in that age range hurts. It’s a reminder of what was and what could have been. I want to rage, scream, destroy something, and get this anger out of my body. It’s not that easy. I have to befriend it and learn to reside with it as a part of my being. I can’t cut it out. It’s part of me.  It’s an unexpected visitor, so I welcome it in and make space for it. Which is how I have navigated this odyssey and it has served me well.

I have learned that I don’t ‘move on’ in order to heal. I have cracks, scars, dents, and dings a plenty. I am surrendering to the reality that anger is in there, too. I was starting to implode and I can’t do that. I must integrate this anger into my spirit, in order to even my keel. I’ve been short-tempered, bitchy, crabby, and just plain mean. That is not who I am. I need to surrender to the anger, embrace the hurt, find the love. Work in progress. That’s me.

THE GUEST HOUSE

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

– Jelaluddin Rumi,
translation by Coleman Barks

Posted in Childhood Cancer | 4 Comments

Follow The Program

We are fortunate in our area to have a public Montessori school. Two, actually. For the past 26 years, our program has been split between two general education schools across town. As a program we have been trying to grow and collaborate, being so far apart it has been challenging. In support of unification, I wrote the following. Our district board approved unification and beginning September, 2014 we will be housed at the same location. I am sharing this for posterity and in gratitude of this incredible program.

With love. 

February 4, 2014

Spokane Public School Board

Subject: Montessori Unification

I’d like to thank you for taking the time to consider the public’s thoughts on unification for our two public Montessori locations.

When our eldest was ready for pre-school, we accidentally discovered Montessori as an alternative style of education. I immediately fell in love with it’s whole-child, whole-community focused form of education. I devoured every last Maria Montessori book I could get my hands on. This style of education is an incredible fit for the developmental milestones in our children. When the time came for our eldest to enter first grade, we knew it would need to be in a public school. Yet, our son was not a neuro-typical child. Educating him in a standard classroom was going to open him up to challenges I could not even begin to comprehend. His future as an adult rode on his name being picked during the lottery process at a time when an empty line was open on the roll sheet.

Over Spring Break of his kindergarten year, we received The Letter. The letter that quietly announced that our son’s future education would be cradled in the Montessori spirit for the next six years. At the time, I even calculated the value of that letter. Private elementary Montessori schooling was running around $3,000 a year. Calculated over six years, for our eldest alone, we won a lottery financially valued at $18,000. The final value would be determined in the years to come.

Our son struggled tremendously during those six years. It was not until his third-grade year that he received a diagnosis of Asperger’s Syndrome. His lower elementary Montessori teacher was a source of information, support and encouragement for us during those years. Moving on to upper elementary, he continued to struggle. Yet, his upper elementary teacher also worked tirelessly within the Montessori framework, to give him support and coping tools.

Upon entering Middle School, he flourished. In ways I can’t describe. Watching him in his first few months of Middle School made my spirit sing with hope for his future. His years as a Montessori student gave him the tools and skills he needed to succeed during those trying years in Middle School. What he has become through his years spent as a Montessori student cannot be evaluated with a price tag. It truly is priceless to this Mom.

We also have two other children. One is currently a sixth grader and our youngest is a second grader. Our youngest was diagnosed with cancer in 2009, at the age of three. At the time I was serving my second year as CoMP South Chair. Had you asked me at the time, I would have told you that I bled Montessori. I truly believe that Montessori is for every child. In the years that have passed, our youngest has received and is in recovery post a bone marrow transplant. He is surviving and thriving within the Montessori community.

We will make the necessary arrangements and accommodations our family will need to implement to make a unification work for everyone involved. That is what one does in a community they are devoted to. I am not attached to a location. I am devoted to the program. Maria Montessori is famous for saying, “Follow the child.” For myself, I will follow the program.

Mindi Finch

Mom to Curtis, AnnMarie and Gregory

Posted in Childhood Cancer | Tagged | Leave a comment

What right do I have?

Not long ago I read a phrase that deeply resonated with how I have been feeling, as of late. I can’t remember the exact source and I did not make note of it, so I must paraphrase. It was on the topic of writing. How it is easier to write about and convey thoughts, emotions and events that live in darkness and despair, than to express their opposites. The light and joy. Since the day of Gregory’s diagnosis, I have lived in the depths of these opposite emotions. Experiencing every iteration between the highs of joy and the lows of despair. Most of the time I dwell in the realm of attempting to balance the duality. Joy and despair reside side-by-side in my daily life.

Having one foot in darkness and one foot in light is a humbling place to live. Yet, I find it easier to express the darkness than the light. Yes, there is plenty of light in my life. Moments that are blinding in their brilliance. Yet, they are the simple aspects of life. You see, my joy is not exultant. It is not filled with the highs that accompany a deed done well or a much desired achievement reached. This joy is shadowed by yesterday’s scars and tomorrow’s wounds. This joy is wrapped in the gauzy fabric of surrender. Surrender to the chaos of the circumstances that have been put before our feet.

This surrender has been the greatest act of courage I could do for myself. It has allowed me to remove the anger. It has allowed me to not question why. It has allowed me to navigate these years without completely loosing my head and heart. It is not a submissive surrender. It is an acknowledgment that I have no control over the random events of life. Coming from this reluctant-to-admit control freak, it truly is an accomplishment. Once upon a time, I had a love affair with manifestation. A concept that any control freak would cling to. The power is mine! Right? Boy howdy, did I learn the hard way that my power is limited and out of my control. To a certain extent. I do have power to choose how I allow my heart to hold what unfolds with each new day. Except we don’t get to start each day with a new heart. Muscle memory also applies to emotions of the heart.

David Gray has a track titled, “Forever is Tomorrow is Today”. Forever is our tomorrow, that will become our today, that will be our yesterday. As much as I endeavor to live in the present, every moment continues to color this moment. The scars, the wounds, the promise of life and the shadow of death. Often I do find myself camouflaging my heart. Shutting the doors and locking it all out of sight. I selfishly keep my joy to myself and hide the despair. Only because my joy in the mundane is so brilliant and I don’t think you will understand.

Every day that the five of us wake up breathing is a reason for celebration. My time with The OffSpring glows with the light of love, laughter and grace. Not just Gregory. All three of them. Had Gregory not survived, our entire family would live a life devastated. I get the opportunity to witness the three of them meeting milestones, reaching rights of passage and creating their own space in time. It is breathtaking in it’s normality. There is not a moment that passes without gratitude.

Who wants to hear about it, though? Who wants to hear how Curtis is flourishing in his first few days in high school? Who wants to hear about AnnMarie’s antics as someone who creates her own music to walk by? Who wants to hear that Gregory’s dancing is the bomb?

I do. I want them to know I do. I want them to know that I am paying attention. It’s not the huge achievements I am most proud of. It is simply their existence that I revel in.

Which means I find myself with the question; “What right do I have to — grieve, complain, despair?”

Forever is tomorrow is today.

I cannot write about the joys and convey them with the emotions that accompany them. To an outsider, they will appear mundane and tedious. What we have experienced yesterday, colors this tedium with a light so brilliant it radiates through my spirit. Reminding me that we really are OK. That tomorrow just might not be so bad. Whispering to me that I ought to write it all down. Joy is worthy of words, too.

Sending you quiet joy,

MindiTheMagnificent

Posted in Childhood Cancer, survivorship | Tagged , | 3 Comments

Absolutely True Diary of a Bald Momma

I’ve been quite reluctant to share my last essay for my English Composition course. As a class, we read The Absolutely True Diary of a Part-Time Indian by Sherman Alexie, which was our inspiration for an Absolutely True Diary of (something in our lives).  This is not a creative writing class, so our essays had to have a thesis, three supporting points, a refutation and cited academic sources. We were to write about something personal in our lives that was also social. My life is filled with the personal and social, but many are too broad to refine into a six page essay. Early on in my essay process, fellow 46 Momma Bekah, suggested the topic of Bald Momma. 

Even my topic was too broad for me to feel satisfaction in what I produced. This essay barely scratches the surface behind my choice to be a Bald Momma. The academic sources were hard to find, too. As a childhood cancer community, we rely on each other and childhood cancer foundations to cull the various sources of information/statistics from published articles into concise tid-bits of easily conveyed sound bites. This essay did earn an A, but there is plenty of room for improvement. 

Without further ado –

The Absolutely True Diary of a Bald Momma

February 2009 I was rudely introduced to the world of childhood cancer when my youngest, Gregory, was diagnosed with Leukemia. This diagnosis, ever so gently given to us by Gregory’s oncologist, thrust me into a world I never would have taken the time to contemplate. Having a child diagnosed with cancer is truly trial-by-fire. Treatment begins immediately. Central lines are placed, blood product transfusions commence and protocols, called road maps, are implemented. Among this chaos and devastation, we parents are drawn to the internet, like flies to honey, searching for statistics, prognosis and support. With this information and connections to other parents of children with cancer, comes a bleak reality. We quickly learn how outdated the available information is, how harmful treatment is for survivors and how hard it is to connect with families in a similar situation. For a large number of us an internal switch is thrown. As we face the chaotic reality of having no control of the disease raging through our child’s body, we grasp for what we do have control over. At break-neck speed we learn how to be childhood cancer advocates. We seek out the foundations that are in alignment with our goals for childhood cancer, join their ranks and start shouting from our newly acquired childhood cancer advocacy soap boxes. If you were to know what we know, survive what we are surviving, connected like we connect, and lived to tell about it, you would get yourself a soap box, too.

By September 2009 I had found my soap box. At this time a group of fellow Momcologists, as some of us refer to ourselves, started forming a group called, 46 Mommas Shave For The Brave. Gregory was barely 100 days post a bone marrow transplant at this time and I was not in a place to become involved. Yet, I knew this was the advocacy group for me. I came on board in October 2010, just after 46 Mommas Shave For The Brave had held their first advocacy and fundraising event. Every year since then, this group of moms to kids diagnosed with cancer from all across the United States and Canada, gathers in one location and we shave our heads bald in solidarity with our children. Throughout the year and at this event, we fundraise for childhood cancer research. We are partnered with St Baldrick’s Foundation, the largest private funder of childhood cancer research. Their signature events are volunteers shaving their heads. Hence, St Baldrick’s. Yes, you read that correctly. I shave my head bald for childhood cancer research. That is how passionate we are about raising funds for life-saving childhood cancer research. Our passion is fueled by the realities of our own children and the lack of funding for childhood cancer research.

Lack of research funding becomes glaringly evident when trying to find current data pertaining to childhood cancer incidence and mortality.  The National Cancer Institute has a division dedicated to culling these statistics: The Surveillance, Epidemiology, and End Results (SEER) Program. Sounds promising, doesn’t it? The most recent information SEER has made available to the public was published in 1999. With data reported between 1975 and 1995. “The overall decline in mortality was nearly 40 percent between 1975 and 1995, a statistically significant decrease of 2.6 percent per year. The overall incidence increased 0.8 percent per year. There were 2,275 cancer deaths among children in 1995.“ (Reis et al. 1) This data, at the later end of this duration, is nearly 20 years old.  How can we begin to channel our collective efforts if we don’t even have current data to work with? We do it anyway. With the goal that we will have current data, in partnership with privately funded foundations. There is one bit of information in this quote that jumps off the page and hits me in the heart. During the reported time frame, incidence of childhood cancer increased. While today we still have nearly 20 year old data to work with. I shiver to consider the increase in incidence with current data. Christine Eiser, Richard Eiser and Veronica Greco vaguely address more recent data in a 2002 research study published in Pediatric Rehabilitation, “Although survival in childhood cancer has improved significantly in recent years, cancer remains a potentially life-threatening illness….”  (215). Reporting dated and veiled information does nothing to help those that fund childhood cancer research realize the need to fund research.  Which results in advocates like myself and 46 Mommas sharing our personal stories in a grassroots effort to raise those precious research dollars. We take time away from our families and our kids, seeking assistance from the general population. The stories we share of our kids survival and life post childhood cancer leaves people breathless. Without current data, there is no reason to believe that anyone would know what life looks like for these kids.

When Gregory was diagnosed I had no idea what life after diagnosis would look like for him. On the surface he looks like any other seven year old, he appears to be thriving and enjoying life. Despite the fact that his treatment history predicts a challenging future for him as he ages. Before treatment can begin there is the arduous task of signing consent forms. These consent forms itemize all the side effects that each particular treatment protocol is known for. It’s been over four years since I signed my name to the bottom of those forms that ominously outlined the potential destruction to my child’s body, treatment aimed to rid his body of cancer yet, leaving behind a hefty price tag for survival. Pediatric oncologists at Yale and Memorial Sloan-Kettering Cancer Center collaborated on a study reporting on the late effects from cancer treatment administered to our kids. “Nonetheless, survivors of pediatric and young adult cancer face a substantial risk of late effects and early mortality; by 30 years from their initial diagnosis, 73% of pediatric cancer survivors will develop at least one chronic physical health condition, whereas in 42% the conditions will be severe, life-threatening, disabling or result in death.” (Spain et al. 196) This is the reality that hits the hardest. Standard treatment for children diagnosed with cancer, designed to kill cancer, is toxic to the rest of our children’s body. Chemotherapy and radiation have devastating consequences when used to save our children’s lives from certain death by cancer. But it gets worse. My son’s only treatment option for a chance at survival was a bone marrow transplant. The Blood Journal, a prominent source for all things related to the blood, published a report specifically addressing the late effects that bone marrow transplant patients face. “…patients had a markedly increased risk of developing a severe/life-threatening complication across nearly all organ systems, with the greatest risk observed for subsequent malignant neoplasms, followed by endocrinopathy and musculoskeletal impairment.” (Armenian et al. 1418) We hang all our hopes on the chemotherapy and radiation that will save our children. In our consent forms we learn that they also cause cancer. If we were not so desperate to save our child’s lives during that moment, we would be dropping our pens and seek out the closest soap box. I cannot be silent. It needs to be shouted to the world that what we use to treat cancer causes cancer, life-long chronic health conditions and death. Shaving my head bald is a cakewalk in comparison to what our children endure in order to survive. Once I found a bit of breathing room my soap box became a constant companion, along with my network of fellow parents. Advocating for childhood cancer research cannot be done solo.

Through our efforts to obtain information we find ourselves creating a rich and diverse support system. 46 Mommas not only grew from the desire to fund research for less toxic therapies for childhood cancer but, the need to be emotionally supported through this life-changing experience. In an article from Pediatric Rehabilitation the motivation to connect is clearly stated, “For most parents, seeing their child in such distress, combined with their inability to help the child, is a highly stressful situation, and it is not surprising that parents experience increases in anxiety, depression, uncertainty and loneliness.” (Eiser et al. 215) This support system that came from having shared experiences and mutual passions helps to ameliorate the fear, sadness, unknowns and isolation that comes with having a child diagnosed with cancer. When our children are in treatment and if they survive, we face a daily life shadowed by fear. This fear does drive our advocacy work yet, as human beings we still need to function in the real world. 46 Mommas has offered me a readily available network of friends to help me navigate the myriad of thoughts and emotions that bubble up to the surface.  I know that at a moment’s notice I can call on them to help me access resources, mobilize action or simply a friendly presence to help spread the burden of life lived with a child diagnosed with cancer. This networking of moms is not a new occurrence. Psychology refers to it as a stress response called tend-and-befriend. “Women more often respond to stress by nurturing and banding together for support (Taylor et al, 2000)” (Myers. 399) When I ran across this categorization in my Psychology textbook, of my own behavior, I was pleased to see that this was a normal response to stress-inducing situations. Not only is 46 Mommas a life-long support system for me, we are a powerful group of passionate and dedicated women. Margaret Mead sums it up best in her well known quote, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has.” During dark moments and days when we feel like we just are not getting anywhere with advocacy and fundraising, this quote finds it’s way to our consciousness. We know that as a group we are powerful. Together we strengthen our spirits in order to face and accomplish the work we are passionate about. Shaving our heads bald is the culmination of that power.

Yet why go bald when survival statistics are so high? There are two statistics that get thrown around the childhood cancer community. In a study reported by the Journal of the National Cancer Institute, “Population-based statistics show the probability of a 5-year  survival of cancer in those under the age of 20 in the United States to be 80%.” (Yasui et al. 1368) There is no argument in that statistic. Survival is the goal of childhood cancer treatment. I will not disrespect you if you chose not to advocate based on that statistic. I will ask you to consider it in another light. 80% survival translates into one in five deaths. Within five years of diagnosis. When it comes to children, I don’t consider the standard 5-year survival benchmark to have any meaning. Eeking out five years of survival post a diagnosis of cancer to a three year old? A life lived for eight years is not a full life lived. It is so very easy to see that big 80% figure and exhale a sigh of relief. When considering survival statistics for anyone diagnosed with cancer we need to engage our critical thinking skills and look at the data from every angle. Ask the question: How do these numbers translate to real life situations? This critical thinking is the basis of my advocacy for childhood cancer research. The brain beneath my bald noggin is furiously taking in and processing the reality of having a child diagnosed with cancer and it’s effects.

My reality is that I have learned, I have survived and I am supported. Along with an occasional bald head. The helplessness still looms large in moments of darkness. Gregory is surviving, in this moment. Through research and relationships I know that his current health status is not guaranteed. My action against those fears is to advocate for him and kids not yet diagnosed. I proudly wear my bald head as a beacon of hope for the future. A future where we have access to current information. A future where our kids will not merely eek out a survival but, live long and healthy lives. A future where 46 Mommas Shave For The Brave exists because we are sharing the communal joy of our children’s success through treatment. A future where moms like me don’t shave their heads out of desperation. We 46 Mommas have a mantra. It resonates so deeply that I have had it tattooed on the back of my neck. “Hair grows back. Kids don’t.” Shaving our heads is not about the hair or how we will look bald. It’s about saving and preserving the lives of our most precious resource. Our irreplaceable children.

 

Works Cited

Eiser, Christine, J. Richard Eiser, and Veronica Greco. “Parenting A Child With Cancer: Promotion And Prevention-Focused Parenting.”Pediatric Rehabilitation 5.4 (2002): 215-221. Academic Search Complete. Web. 6 June 2013.

David G Myers. Exploring Psychology. Holland: Worth Publishers, 2011. Print.

LAG Ries, Smith MA, Gurney JG, Linet M, Tamra T, Young JL, Bunin GR (eds). Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995, National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD, 1999.

Emily S. Tonorezos, et al. “Response To A Treatment Summary And Care Plan Among Adult Survivors Of Pediatric And Young Adult Cancer.” Journal Of Oncology Practice 8.3 (2012): 196-202. Academic Search Complete. Web. 6 June 2013.

Yutaka Yasui, et al. “Cause-Specific Late Mortality Among 5-Year Survivors Of Childhood Cancer: The Childhood Cancer Survivor Study.” JNCI: Journal Of The National Cancer Institute 100.19 (2008): 1368-1379. Academic Search Complete. Web. 13 June 2013.

Works Referenced

Finch, Mindi. www.MindiTheMagnificent.com. WordPress.com, 2009-2013. Web. 4 June 2013

Finch, Mindi. Stored Memories. 2009-2013. Cortex and Cerebellum. The Brain.

. www.StBaldricks.org. St Baldrick’s Foundation, 2013. Web. 4 June 2013

Posted in Childhood Cancer | Tagged , | Leave a comment

Not Just The Military

Synchronicity has a very strange sense of humor. For my second essay in my English Comp class, we were to write a research paper, inspired by a poem. My inspiration turned out to be on the topic of PTSD in parents after childhood cancer/life-threatening illness in your child. Little did I know that while writing and researching the paper, I would have one of my biggest PTSD events, thus far. It has since resulted in a major shift in how I live post-childhood cancer diagnosis and through Gregory’s survival. At least for now. For my own posterity and your personal edification, my essay follows. Also? I received a perfect score. *squee*  Please keep in mind that this was for school, not just my blog.  

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.

Posted in Childhood Cancer | Tagged , | 8 Comments

Mother’s Day. Made possible through research.

Mother’s Day is tomorrow.

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.

Posted in Childhood Cancer | 1 Comment