Tag: momcologist

“Reconciling” childhood cancer and my faith

The anxious perfectionist in me hesitates to write most days. I think. A lot. All the time. All day. But, I post very little. I think a lot about why that is. Fear, anxiety, wanting to be liked, time, energy, laziness. Insert excuse here. Trying to find my voice on this blog is interesting. I am not entirely sure of who my audience is, or why those who have read before come back, or don’t. I am sure there are analytics about that somewhere. Maybe some techy blogger will help me figure that out.

Then, there are days like today where the universe send me multiple messages and it feels like I am being hit over the head with a baseball bat and the message is “Write, Monica!” You have something to say, write about it. Tell a story. So today my story is about the messages that I receive/see/choose to see about our journey with childhood cancer and trying to reconcile that with my faith.

I am following Saya Hillman on Twitter. She is a fellow Boston College alumna (Go Eagles! Women and Men for Others!) who is living with purpose in Chicago. She runs Mac and Cheese Productions, which is a company that helps people “live a life of yes!” Anyway, today on Twitter, she sent a link to this piece by Nate Pyle about the lie of God not giving you more than you can handle. I can’t remember how many times people said this to us, or about us, or near us, while L was in treatment. I have always hated this phrase. Detested it with the fire of a thousand suns. It has always rung false for me. Trite and condescending. And, in my experience, it is usually uttered by people who had experienced very little suffering. I know. It’s all relative. But, when your kid has stage four cancer and is being pumped full of poison, and you fear for their very lives, well, your perspective is different. My perspective is different.

I clicked on Nate’s blog and read through some of his posts. So far, I like what I have read. He is a man of faith, partner, parent, trying to do the best he can. He is also a Reformed minister. S and I met 13 years ago at Hope College in Holland, MI. We were the two Catholic people on staff at a Reformed institution, who after six weeks of intense Residence Life training decided we had crushes on each other and we should start dating. So, although I am not Reformed, my experiences those three years in Holland are very near and dear to my heart. They brought me my best friend, which brought me to my journey as a mother, and as a momcologist. See, signs everywhere.

I really love Nate’s raw honesty in his post. He is grieving, hurt, angry, confused. All of these things are okay. They are good. They are real. You have to go deeper into these feelings if you are ever going to heal. He recognizes this. He shares it publicly and in so doing, gives others permission to do the same. That rocks. That is what sharing your faith is about. I think. At least, that is what I look for and appreciate in others and their writing. I also love that he calls out “bumper-sticker theology” and challenges people of faith to ask tough questions. Yes. This. Asking the tough questions eventually leads to emptiness. In the emptiness is where the “answers” come.

S. and I talk almost daily about what it means to be blessed. Is there a difference between a gift, good fortune, a blessing, and just plain old luck? As a person of faith I sometimes think that I am supposed to think I am blessed. That all the good things I have, create, am, or will be, are from God. Okay. If this is true, then as a person of faith, I am bound by this tenet’s logical opposite, which is that all bad things also come from above. Does God have a curative and causative will? Is God a puppetmaster up in the sky pulling strings? Yikes! I sure as heck hope not. I personally don’t believe this.

I continue to stay involved in the childhood cancer community on Facebook and Twitter and my volunteer work with St. Baldrick’s. Some days this is harder than others. I see posts about “God answering prayers” or “Yes! God healed my grandson” or “believe in miracles!” juxtaposed with posts by my Momma friends who are missing their babies, grieving for lives cut too short, for miracles that didn’t come. Did God take their children to save others? Did they get chosen to walk this road because God believed that they could “handle” it? Are my friends who lost their babies more or less blessed? Are the same people who praise God when they get good news also praising them when they are hurting? No. I don’t believe this.

I can only speak for myself, but when my son was diagnosed, I felt totally and completely unprepared. I was a full-time PhD student, mom to two very young boys- still breastfeeding one of them- a wife, and part-time employee. At that time, my life was about me. Was I being punished? Or, did God send L. to me and S. because God knew this would happen to him and God knew that as L’s parents we could “handle” it?

I don’t have answers to most of these questions. How I see myself as a Christian has evolved over time and been deeply changed by my experience as a wife, mother, and momcologist. I grapple with these tough questions almost daily. I think, I pray, I (sometimes) write. So far, this is what I have come to believe:

The universe is random and chaotic. Bad things happen to good people. Good things happen to bad people. God did not give my son cancer. God did not take my son’s cancer away. My son wasn’t saved because I prayed harder, better, or more faithfully. If anything, I doubted more then (2008-2010) than I ever have before or since. God didn’t give my son cancer because he knew I could handle it. We are blessed. We are lucky. We are fortunate. All of them, none of them? We have health insurance. We have an amazing team of nurses and doctors at a world-class hospital less than 100 miles away from home. We have supportive family and friends who rallied around and behind us.

The God I know, love, wrestle with, and shout at, and thank, that God laughs when I laugh and weeps when I weep. That God holds me up and gently helps me choose to search for meaning and to embrace mystery.

Thanks for nothing, White House.

Maya always tells it like it is. This is no exception.

Rockstarronan's avatarRockstar Ronan

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Ronan. When I’m not writing to you on the blog, I feel like a bad mom to you. I’m hard on myself and, fuck, I just plain miss this. I cannot keep up with everything that is going on, and life seems to be running at an outrageous speed. So much has happened and so much is going on that I don’t even know what to address first.

First things first, Ronan. I am so overwhelmed with every aspect of my life right now that I feel like a breakdown might be in order, just because I fucking deserve one. I keep telling myself I have to get through September first, but I truly don’t know if I can wait that long.

So where to start? The most important thing, of course — the thing that has been consuming me. It started with that phone call from your Mr. Sparkly…

View original post 1,040 more words

Dear Mr. President

I made the mistake of opening this email while I was sitting in a restaurant with my two boys. On vacation. For the last weekend of the summer before they both go to school. I should have waited. I should not have opened this email. Because, Mr. President, the anger, disgust, and disappointment that I feel at this moment are beyond words.

I guess on some level I should be thrilled that you took the time to direct someone in your office to draft a standard kiss off email to all us childhood cancer parents. The grammar is correct and the language is very…political. And, hey, I got a message from the White House! But, unfortunately for me and my son and the THOUSANDS of children like him, the message that we got LOUD and CLEAR from you and your administration is that YOU. DON’T. CARE.

To add insult to injury, your message uses the very statistics that we are railing against. Mr. President, the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, well then, I think we need to redefine “progress.” And had YOU, not your staff, taken some TIME to read our petition and really listen to the parents who are pleading with you, you would have known better.

And the icing on the cake… you throw in your Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like my son. And, I am paying quite heavily for the health insurance and medical care that saved his life. However, that is not the point. This was NOT the time nor the place to advance your politics. This was your chance to listen. To be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos.

What is also disheartening to me is that I am sure you already have the pink light bulbs that you need to illuminate your tax payer supported home in October. Because, you know, boobs matter more than kids. I have boobs. Nice ones. I will most likely get breast cancer. There is a link between my son’s diagnosis and my chances of getting diagnosed. And guess what. I would gladly go under the knife and lose them both if it meant that more money would go to the kids.

I think what upsets me most is that you are a parent. Your girls are smart, funny, beautiful, and well cared for. You would do anything for them. So, why not stand up and speak out for them and their friends? That is what we are asking. That you make a statement, that you take a stand.

Mr. President, I am disappointed to the point of tears. Good thing your time in office is almost over. Not only did you lose my respect, but you lost my vote as well.

And, no, I won’t be “staying connected” with you.

The White House

Fighting Pediatric Cancer

By Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public Engagement

Thank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.

President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.

President Obama with Jack Hoffman

President Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)

But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.

That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.

We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.

In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more at HealthCare.gov.

So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.

Tell us what you think about this response and We the People.

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

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Seeing gold

I follow Glennon Melton on Twitter. A dear friend of mine introduced me to her blog, Momastery. For the most part, I like her stuff. She is funny, honest, and like the rest of us working to be the best mom she can and doing it in a positive way. I like that. I am also trying to do those things and spend less time in the negative judgey place that leads nowhere good. Today is not one of those days.

A guest blogger on the Momastery site wrote about her son’s autism diagnosis and how it has impacted their family. http://momastery.com/blog/2013/06/20/not-your-typical-mom/

There are many parts of this post that resonate with me. The devastation of a diagnosis that seemed to come from nowhere; the challenge of learning a new language of medical terms and treatments; long-term prognosis; impact on her marriage; caring for a younger sibling. The list goes on and on. I get it. I have been there.

And then, I read this: “I had irrational thoughts. I remember thinking- I wish Greyson had cancer, then there would at least be the possibility that it could go away.” Emphasis hers. And now I am seeing red. I am absolutely seething right now. The Momma bear is out in full force.

My post is not about this woman in particular. I don’t know her or her family. And this post is not about Momastery. I admire Glennon and her work.

My anger stems from the complete lack of awareness and understanding about cancer in children and how far we still have to go. Clearly this blogger knows nothing about childhood cancer. How prevalent it is- It could have been either of her sons or one of their buddies. How dangerous it is- 80% of our kids are STAGE 3 or 4 at diagnosis, thus greatly reducing their long-term chances of survival. How long and draining treatments are- YEARS. How OLD the medicine is and how lacking the technology really is for kids- developed over 30 years ago, for use in adult patients. How much money really goes to the kids- 4% of the NCI’s total budget. Mere pennies when compared to adult cancers. RAWR.

And, that’s the rub. This woman is doing all that she can to get her son all that he needs. She is coping. She has irrational thoughts. I get it. Been there. I remember at the very beginning wishing that our son had been diagnosed with leukemia because I thought (at the time), that that was the “good cancer” to get. Talk about irrational thoughts.

What is dangerous about this woman’s post is the complete ignorance it displays and the number of people it will reach who will blindly gloss over her words about childhood cancer and focus on the part about “the possibility that it could go away.” Some people will read her words and not even see that part. For most people, cancer is treatable. It is something that adults get as a result of their unhealthy lifestyle choices, smoking, or genetic risks. And as a result of the pervasive pink-washing (and soon to be public service announcements about men & their prostates) most people also believe that we are making progress against cancer.

Unfortunately families who have been devastated by a childhood cancer diagnosis know different. We rarely have “the possibility that it could go away.” Instead, we live with the reality that it could come back. It could come back worse than before. If it does, the chances of survival are even less than they were the first time. Instead, we live with the possibility of a secondary, new cancer which could have been caused by the very treatments that were used to save our babies the first time. And for some families, their child’s cancer never went away. It stole their children and they died.

I am frustrated because there are people out there, there are mothers out there, who still believe that their children are untouchable. And even worse, there are still mothers out there who believe that even if it did happen to their child, that it could just go away. Like they can take a pill, or cut off boobs (kids don’t even have boobs), or remove moles that look suspicious and then your kid will be cancer-free.

Mostly, I am frustrated with the childhood cancer community. Yes, good things are happening and there is awareness out there that didn’t exist before. I am thrilled for that. I was part of making it happen. But, I am realizing just how far we really have to go. And, that within the childhood cancer community, we need a stronger, more pervasive message that isn’t about anger or fear (ironic given the anger of this post!). We need to find a way to speak with words that will be heard. I am still searching for them. I won’t stop. I hope, I pray, I wish, I dream that others will be touched by our experiences and join us.

Going to re-focus the rest of today and see GOLD (not red ;))

Gold Ribbon
Kids get cancer, too!

Sick of all this cancer?

Sick of all this cancer?

Nicole Scobie blogs about her adventures in “Cancerland and Switzerland.” This most recent post is spot on. Please take a few moments to watch Erin (who is battling DIPG) and then read Nicole’s post about Erin’s mom Amanda and the reaction of her “friends.”

Kids with cancer need your financial support. They need research for them. They need all of us to teach our children about friendship, love, caring for those who are injured or sick, and loyalty.

Parents of children with cancer need your compassion, empathy, and listening ear, not your pity.

No whining allowed

#ReverbBroads2012 Prompt Day #5: Come up with a new Constitutional Amendment (yep, I am breaking the “rules” and skipping around! Thanks, Brenda!)

I hereby decree that the next amendment to the Constitution of these amazing United States should be: If you whine about it, volunteer to change it

Definition of whining: to complain about in a feeble or petulant way.

That pretty much covers it. We all whine. We all vent our frustrations. It is human. We see an injustice or something doesn’t go our way at work and we shout from the Facebook, blog, Twitter rooftops: “Hey, I was wronged! ” Or, we don’t like the way an event or program has been planned and we chime in with snarky comments after everything has been done. We have all been there. Heck, sometimes we have even been that person. The angry staff member or committee member who did not jump on board when the opportunity for involvement was offered at the outset, suddenly sweeps in at the last minute to offer advice, with a smirk and barely veiled disdain. “Well, I wouldn’t have done it that way.” Then, crosses his/her arms and continues to pout until the meeting is over. Yep, pretty petulant.

I know myself quite well. I have a big mouth. I whine. I vent. A lot. Sometimes it can take me a few days (okay, with some stuff it is weeks!) to pull myself out of my self-indulgent slump. But, I always do. After I am done whining, I move into action mode. I open my big mouth and I volunteer myself to help. I speak up with suggested improvements and changes. This is how I came to be an RA, Orientation Leader, writer for the student newspaper, AmeriCorps volunteer, student affairs professional, committee member, conference planing committee member, MBTI certified, non-profit volunteer, bald Momma….

And therein lies my suggested amendment. If you whine about it, volunteer to change it.

Don’t like the music program at your kids’ school? Volunteer to be on the curriculum committee or PTO.

Wish you had a more flexible schedule? Talk to your supervisor.

Don’t like the lack of female representation on a university committee? Get on the committee.

Frustrated with your Congressperson? Write a letter. Make a phone call. Take your cause to the web. Twitter is quite powerful.

Do not be a petulant child who chimes in from the cheap seats after the fact. Whining is not helpful to the cause. It creates unnecessary drama, is disrespectful of the people who have actually devoted their time and talents to the cause, and it hurts morale. Whining is inevitably about the whiner. Usually the whiner is hurt, or angry, or unhappy with themselves about something. Don’t engage it. Push back and encourage involvement.

Just. do. something. Anything.

But no whining!

Tarantulas, Sharks, Monkeys, and….Relapse

#ReverbBroads2012 Prompt for Day 2: What gives you nightmares?

In general, I am not afraid of spiders. I don’t like them, but I am also not the type to stand on top of the toilet seat or dining room table while some man comes in to rescue me from a daddy long legs. I just wad up a bunch of TP and attack it. Then, flush it away and moving on. However, tarantulas are in an entirely different category. Just the thought of one gives me goosebumps and makes me feel nauseous (nauseated?). I lived in the desert in AZ for a year and the entire time I was there I was irrationally afraid that a tarantula would make its way into our house. I think most of this fear stems from that episode of The Brady Bunch, when they all go to Hawaii, and a tarantula ends up on Peter’s face. Anyone who grew up in the late 70s/early 80s knows exactly what I am talking about. Creepy! I think it’s the hair. On the tarantula, not Peter 😉

I grew up in NJ. Our vacation every summer was two weeks at “the shore.” (For those uninformed, this is the real Jersey Shore, not that trashy MTV show that ruined it for all of us Jerseyans and forever tainted the rest of the world.) I have also seen the movie Jaws. So, there you go. Pretty natural fear of sharks. Although I am an excellent swimmer, I never ventured too far out into the ocean. Why risk it? Interesting side note, my husband is obsessed with the Discovery Channel’s “Shark Week.” Stays up until 2 or 3am because he.cannot.turn.away. Then he has nightmares for a week and I get to hear all about them. And then I have nightmares.

I think monkeys are creepy. I love chimpanzees and find gorillas fascinating. But monkeys creep me out. I think it is the annoying oooohhhh-ahhhhhh sound they make. Ugh. Cannot stand it. You know that scene in Toy Story 3 when they tape up the monkey so they can escape from day care? Sets my teeth on edge. Blah! I have to cover my ears when we watch it.

I hesitate to write this next part. I am trying hard to have less cancer and more hope in my life. I am trying not to make every single post about our family’s journey with childhood cancer. But, me being the rule-follower that I am, I feel I must really answer the question.

What gives me nightmares?

That my son’s cancer will relapse and he will die.

Our older son is a cancer survivor. This is a miracle. He is a miracle. He is a fighter. He is a survivor. He was stage 4, with a very aggressive diagnosis (Rhabdomyosarcoma).

It is hard to release these words to the universe. As if somehow saying them out loud might make them true. Silly. Irrational. Even saying that makes me sound crazy. I know this. But once your life has been touched by cancer, everything takes on new meaning, both good and bad. And, you don’t go back to your old life or your old self, because neither of them exist. While my son is two years off treatment and has been cancer free since October 2009, the fear of relapse is an absolute terror that I keep at bay every day. It is a dark shadow that creeps into my room and my dreams at night. When I kiss him goodnight, my heart stops. I bury my face deep into his neck and I inhale. I am trying to memorize his smell. I rub my hand all over his head, which thankfully now has hair. I put my hand over his heart and try to match its rhythm to my own. I kiss his cheek, rub his back. And I thank God that I have been given another day with him.

At night, I have dreams of him running across fields of sunflowers, flying kites on the beach with his brother and grandpa, swimming in the ocean with my mom, going to college, getting married. I have nightmares that all of this will be stolen from us.

I am not sure what to say next. There is no Hollywood ending to this movie. There is no bow to wrap this package. It is my life. I choose to fully live it. Nightmares and all.

The 11th and 12th things I will never do

11. I will never say to another momcologist, grieving parent, or friend, “Well, at least (insert name of loved one here) is no longer suffering. S/he is in a better place.” Again, these words are patronizing and insulting to the person hearing them. Not everyone believes in an afterlife where a person’s physical and spiritual selves are reunited and restored. Not everyone believes in God or Heaven. A statement like this assumes that the person you are speaking with believes what you believe and that they might find some comfort in these words. Maybe. But probably not. It is my experience that people who say such things do not know what else to say, or have no personal experience from which to speak.

12. I will never use this forum (or Facebook or Twitter) to complain about my children. It makes me sad when I see these posts (too often, if you ask me). If you have time to post on Facebook about your child’s behavior, then you have time to get off Facebook and address it. Children are a blessing to be cherished. Children are the greatest gift and legacy that we can leave on this world. I want my children to look back on my words and be proud and maybe even a little inspired (if I am lucky). All that I do and say should lift them up, not tear them down.

10 things I will (probably) never do

Happy New Year everyone! As I continue to slowly dip my toe in the water of blogging, I am cheating and using some prompts from other people. There is a website called http://reverbbroads.blogspot.com/ where they posted a list of writing prompts for every day in December. As you can tell, I am very behind! Actually, most of the prompts felt too much like homework. And since I am done with my PhD, homework is no longer part of my life! Whew! However, the prompt for December 6 was intriguing to me and I continued to come back to it as I thought about what to write for the New Year. So, here it is, my list of “10 things I would never do.”

1. Never say never. The world of childhood cancer taught me that the world of absolutes does not exist. And, I have already done things that I never thought I would: shaved my head, connected with other momcologists in deep and profound ways, started a blog….

2. Go skydiving. I am afraid of heights and if I ever had that kind of disposable income, I am not going to waste it jumping out of some plane praying that my chute will open.

3. Never buy another Volkswagen. EVER.

4. Spend five years with an unreliable car that I hate. Not worth the emotional and physical stress.

5. Take a job where I have to commute more than 30 minutes one way. From December 2010 to November 2011, I drove 126 miles each day to get to work. Great position (I was a Director), great people, great students. But, the toll it took on me, my health, my family, my car, and my wallet were very taxing. Still recovering.

6. I will never go another year without some sort of regular exercise routine. See number 5.

7. Go back to school for a degree. There is a reason the PhD is called “terminal.” Happy to be a student for fun, but for grades, no way!

8. I will never say to another momcologist, grieving parent, or friend, “I can’t imagine how you feel.” Or, “I don’t know how you do it.” These words, to me, are patronizing. They put distance between the person saying them and the person receiving them. It is as if the person saying them is really saying, “Thank God you are experiencing that and not me or my kid.” I didn’t choose to have a son with cancer. We were drafted. Our choice was to fight like hell and win.

9. I will never say to another momcologist, grieving parent, or friend, “God doesn’t give us more than we can handle.” BS. I am a person of deep faith. I believe in God. I believe that God died for me and for my sins. But, I do not and never will, believe that God causes children to suffer or that God gives us our sufferings to teach us a lesson. The universe is random (more on this in a future post) and bad things happen to good people. And, there are in fact many people out there who have “more than they can handle.” This is why we must pay it forward and help where we can.

10. I will never not have a big mouth and strong opinions. This is my curse. I say what I think. Sometimes, I do it in the wrong place at the wrong time. I am getting better at apologizing for those times. This is also my gift. I will spend the rest of my life using my big mouth and my strong opinions to fight and advocate for children with cancer, increasing awareness and raising money for pediatric-specific research. Awareness=funding=research=cures.

Diagnos-a-versary

Three years ago today, December 12, 2008, the foundation of my world crumbled and all that I thought I knew was stolen from us. At approximately 5pm, in a very sterile, standard-looking patient room at University of Michigan CS Mott Children’s hospital, two oncologists and one pediatric surgeon told us that our three-year old son had cancer. That it had already spread to his lungs; “multiple nodules in each one.” That it was “treatable.” I asked one of them (whom became our son’s lead doctor and whom we now like and respect) if my son would die. And he told me, “With cancer, that is always a risk.” They shoved paperwork in my face (I think it was agreeing to treatment and that they could take a sample of my son’s tumor. But, honestly, I am still not sure what I signed that day.) Somehow, we made it out to our car in the parking garage. I have no memory of that. The next thing I remember is holding my husband’s hand while he drove us home in the dark.

My sister-in-law works as a youth minister. She loves God and does His work every day. She has tremendous faith and a gift for living in reality as well. Just this morning, she sent me a message saying that she was thinking of us today. I told her how angry I am, how cranky I feel. She told me that just because we are angry and sad doesn’t mean we aren’t grateful, too. Whew! That is exactly how I feel. She also told me once that God wants our honesty, not our piety. Well, then, here it is. Here it is in all its gut-wrenching reality!

Today, I feel conflicted, disjointed, off-kilter. I am angry, almost blindly so. As I write this, I am literally shaking with rage. My son was diagnosed with stage four cancer. The chemotherapy that was used to treat him is 25 years old and was created for adults. The list of long-term/latent side-effects is endless and devastating.

But, I also feel humbled, grateful, and hopeful. My son is still here with us. Every day, I work to be worthy of that gift. To be the best mother I can, to advocate for more funding and research for the children, to learn something from all of this, and to pay it forward.

Hope

“Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.” ~ Emily Dickinson

The further out from treatment Luke gets, and the more clean scans he has, the better his chances are for long-term survival and no recurrence. If Rhabdo kids relapse, it usually happens within the first year off-treatment. Luke is already 21 months OT and has had clear scans since October of 2009. He eats and sleeps well. He is doing well in school. He makes friends easily. He is kind and funny and smart.

Yes, I have hope; this is ironic, given that I was never a person who tended toward optimism. I have always been a “glass half-empty, but I am going to work really hard to make it full” type person. I have tended towards sarcasm and melancholy as covers for my fears and inadequacies.

Yet, in spite of myself, I have hope. My son is still here with us.

But, my son also had stage four cancer. So while I have hope, I also have perspective. And that is the rub.

Perspective

I so desperately want to “move on.” To let my guard down, to exhale. To believe that my son has been healed forever, that the cancer will never come back, or that he won’t get a different cancer later in life. (The statistics are grim and the chances of secondary cancer-as result of the very treatment that saved his life- are just as high. See: http://www.curesearch.org/ArticleView2.aspx?id=9268&l=9240)

I could choose to believe this. I want to choose to believe this. Some days, I do. But, the truth is..the raw, naked, awful truth is that this is not our reality. And this is certainly not my reality today. Anyone who has experienced any kind of trauma or loss knows that your old life no longer exists. And this is what cancer steals from families like ours: the blissful ignorance of every day normal life. The belief that the world is right and true, that bad things only happy to bad people, that parents outlive their children, and that if you are a good person, love your family, work hard, etc., etc., that you will remain unscathed.

As I write this, wallowing in my self-indulgent rage, there is a family in Massachusetts, who is burying their five year old daughter today. She fought neuroblastoma for almost three years. http://www.patriotledger.com/features/x890738774/Funeral-Monday-for-Charlotte-Kelly-5-who-died-from-rare-form-of-cancer

She died on my son’s birthday. She is being buried today, the three year anniversary of my son’s diagnosis. I am thinking of Charlotte Rose and her family. How by now, the funeral Mass is over and they might be on their way to the cemetery. How her parents might be holding each other to keep from falling. How someone, perhaps a grandmother or trusted aunt is holding her brothers’ hands and walking slowly, slowly to the spot where they will bury their sister, forever. How they are bracing against the wind, trying not to let it take their breath away. How that priest might be struggling to say something profound, to say anything that might provide comfort. Knowing, really that nothing will because so much of this day is wrong. Very, very wrong.

There is another mother in Minnesota who today grieves for her daughter. December 12th is her daughter’s birthday and the anniversary of her death. And still, I know another mother in Miami who’s daughter turns nine today. She is fighting rhabdo (the same diagnosis as my son) for the third time.

So, what I am supposed to do? Which path will I choose- hope or perspective? Is it an either/or decision? Can I actively live into both of these choices? I could live every day in fear, waiting for the other shoe to drop. Some days, I do just that. I let myself fall down the rabbit hole into the darkness of pity, doubt, anger, and fear. Diagnos-a-versary  might be one of those days.

Even as I write these words, I am embarrassed by how petty they sound, how self-absorbed and silly. My son is still here with me. I get to kiss both my boys every night and every morning; and I do, every chance I get. I get to have breakfast and dinner with them. I get to inhale their smell and hold them whenever I choose. I know too many mothers (and fathers) who cannot say the same. I know too many mothers who would give anything and everything to have what I have.

People from all over the world prayed for my son and for our family while he was in treatment. Thank you. The time you devoted to this, and the faith with which you put those prayers before God are a gift to us. Please do not ever stop. And, if I may ask another thing of you. Please pray for me as well. Pray that I have the courage to choose hope. Pray that I am strong enough to get out of my own way. Pray that I can acknowledge my anger and my fear. That I can name them, look them in the eye, and choose to not let them win.

Right before our son began six weeks of daily radiation treatment, our radiation oncologist told me, “Your hopes and dreams for him are not gone. They are just different.” Truer words were never spoken. The hopes and dreams I have for myself are not gone either. They are just different.

(The term diagnos-a-versary is borrowed from another 46 Mommas momcologist I know and love.)