Two good guys

Ben and I got back from New York late Saturday evening. It had been a very long and arduous week of antibody therapy so we were both beyond exhausted. Nothing more than sleep was on our immediate agenda.

Sunday morning, Matt loaded up the canoe while the rest of us slept like a bag of rocks. We were eventually coerced into leaving the safe haven of a nice, warm bed by the fact that we’d be going up to Summit County to canoe with our good friend, Gil. Oh, and stop by Krispy Kreme to get some doughnuts before heading to the mountains.

It’s always nice to see Gil. I’ve known him for many years. He and his wife, Susan, retired to Frisco, Colorado in the mid-90’s. They have a beautiful home that offers stupendous views of Buffalo Mountain and the first two peaks of the 10 Mile Range. It’s absolutely breathtaking.

Sure, they have a beautiful home in a prime spot that affords easy access to skiing in the winter and hiking in the summer. That, in itself, is a rare jewel. But to know Gil, well, he is simply an incredible man. He loves having people visit. He loves teaching children (he taught Ben how to ski). He loves nature. He just loves.

And, 30 years ago today, he died.

He was struck by lightning in Ohio 30 years ago while out on a golf course. On the 17th hole. Right in the head. His body was thrown from the golf cart and his clothes were nearly blown off of him. He was dead for about four minutes. Fortunately, the other members of his party were able to perform CPR until help arrived. Gil woke up several days later in the hospital. Once he learned what had happened he figured he had the best excuse in the world to do some crazy, off-the-wall stuff.

His idea of crazy and off-the-wall is to embrace life and all that comes with it. He is no stranger to the trials that life has to offer but he sorts through it with a peace that I sincerely admire. I absolutely love being “grasshopper” to his “Master Po”. I look forward to learning how to love as greatly as he does. I certainly couldn’t have a better earthly teacher.

So, Sunday, Gil showed us an eagle’s nest while we were out canoeing. That, in itself, was pretty darn cool. But when we saw two eagles soaring majestically against the backdrop of mountains, well, that was pretty flippin’ awesome. In all my years of loving nature I’ve never seen eagles in the wild until Sunday. It’s a memory that I will treasure for the rest of my life. At least until I develop Alzheimer’s and lose all my precious memories. 😛

I have quite a lot a precious memories that involve my dear friend, Gil. And had he died 30 years ago it would have been a tragedy for me. Sure, I wouldn’t know what I was missing out on – I was only 12-years-old 30 years ago and didn’t meet Gil until I was 30 – but knowing what I know now my life is “much more better” because Gil has been a part of it. He is such a blessing.

We left a nice day with a dear friend to head back to Denver. When we arrived there was a message waiting for me from a high school friend relaying some horrible information: one of our beloved classmates had died Saturday while on vacation with his family in Michigan. He drowned while swimming.

Andy, or “Andyman” as he was known in Columbus, had died. He was 42. A graduate of WMHS class of ’86. Voted “Most Talkative”, which certainly fit since he was a popular disc jockey for CD 101 in Columbus. He was married to Molly and had three sons, one who was born within this past year. It was shocking and absolutely unbelievable that Andy was gone.

I met Andy when we were six-year-old first graders at Kirkersville Elementary. When I think back on those early memories of Andy I always think of the size disparity between the two of us. I was really short and he was really tall. But once kids move past comparing the physical attributes of one another and learning about what makes a person who they are, well, the word that comes to mind to describe Andy would be “kind”. He was a gentle giant. A kind-hearted soul. He loved the Beatles. He loved to sing. I’m pretty sure he performed at King’s Island one summer as Elvis. Music was his thing. And he made it his life’s work. I’m sure he was living a life he absolutely loved when it was cut short this past Saturday. While I’m terribly sad that Andy is gone I can take some comfort knowing that he loved his life. He lived it to the fullest. Andy made such an incredible impression on his community and he will be sorely missed.

I’m having a hard time finding balance. I know my immediate job is to get Ben through this cancer hooey and Madeline through living in the shadow of Ben’s cancer hooey. Other than that I feel pretty darn unhappy. I’m not a fan of the life I’ve been living and am pretty upset in general with the “Big Man Upstairs”. I am not skating through my quagmire of a life with the grace that I’d like to be showing. Maybe I’m doing okay from an external standpoint, but internally, I’m a big old mess. Like a Seurat painting. Up close it doesn’t look like much but from far away it looks okay. Just don’t get too close to me. I won’t let you anyway.

Grief is getting the best of me. I’m tired of loss. It seems like every celebration is counterattacked by a tremendous setback. And I just can’t find the grace right now to get me through.

Yes, I’m celebrating the fact that my good friend Gil didn’t die 30 years ago today. But I’m stupefied by why Andy, a man that personified love – for his family, his friends, and his life – had to leave so early.

It’s a crazy world. Someone oughta sell tickets.

No National Holiday scheduled today…

I’m not feeling overly clever today so nothing is coming to mind as to what I should write about. Hmmm. Let’s look through my “files” and see what we have. Ben is always a sturdy topic. My childhood has always proven to be a treasure trove of crazy antics. And my mind goes at warp speed 24/7 and almost always offers something of interest to talk about. But today?

I got nothin’.

I always loved my creative writing classes. Some days there would be a preassigned topic to write about and other days would be free-form. I usually felt comfortable with either exercise. But today without a preassigned subject to discuss…

I got nothin’.

I’m a bit depressed. Ben is sleeping off his cocktail of dilaudid and fentanyl that he has been getting throughout his antibody infusions. Occasionally he’ll bust out with some random statement, nearly always having to do with a video game. The first day he was pain-med-induced he talked at great length about the video game “Little Big Planet”. I wish I had a recorder to catch his musings. I’m sure he’d get a kick out of what he says when he’s (as he likes to call it) “confused”.

Man. You know what? I got nothin’. I’m tired. Cranky. Pouting. Agitated. Oh! Wait! That reminds me. I have something to talk about but it involves some foul language. So if you’re easily offended or just don’t want to wreck your pristine image of me, stop reading now.

I mean it. Stop now.

Are you sure? Okay, here goes. But understand that I warned you. And you cannot hold it against me. If I had a waiver available I’d make you sign it.

I had my first “verbal exchange” with one of the “Natives” last night. I was pushing Ben along in a wheelchair (it was our very first outing since starting all this antibody hooey) and had entered into a crosswalk. We, as pedestrians, had the white “walking guy” light so I was not jaywalking or trying to squeeze in a quick jaunt across the street while the “red hand” was flashing. I was well within the boundaries of crosswalk etiquette.

About half way into our journey, a fancy black car pulled into the crosswalk. He stopped. There was no one in front of him blocking his way but he stopped. Right in the middle of the crosswalk. He did not have the light. And while I would usually maneuver around such an inconsiderate ding-dong, I had no choice but to say “Hey! You’re blocking the ramp!” The man in the fancy black car gave me a nasty look while he waited for his friend to cross the street and get into the car. Mind you, he could have pulled up a bit. But he refused. He just sat there, staring me down. He could see that I had a wee little man in the wheelchair. A boy without hair. A boy fixated on his Nintendo game. And the jerk in the fancy black car didn’t give a sh*t. I stood in the middle of the crosswalk with an incredulous look on my face. At least I think that’s how I looked. I can’t be sure. So, I wheeled around El Jerko and popped a wheelie to get Ben up on the sidewalk.

I should have let it go but I couldn’t. “Jerk!” I blurted out as I gave him my best look of disgust.

“Yeah? Well, F*CK YOU!” El Jerko screamed at me as I wheeled my cancer-stricken nine-year-old down the street.

That was all it took. I snapped. And I yelled it right back at him. After about five exchanges of the same two words I turned my attention back to pushing Ben down the street. Ben, apparently oblivious (thankfully) to the verbal gunfire between El Jerko and his delicate flower of a mother, didn’t seem to be any worse for wear. I sincerely believe he was too fixated on his game to hear my foul-mouthed shenanigans.

But that Jerk started it.

I shouldn’t have let him draw me in. But I guess I just get upset when a situation that should impart a bit of compassion and a simple act of moving your car a couple of feet in order to get out of the way – I guess I’m just blown away by some people. Rude. Jerk. Whatever that man is so mad about in life, well, he should do some serious reevaluation. And perhaps a bit of yoga.

Personally, I hope he has to spend some time in a wheelchair. If only temporarily.

But here’s the pot calling the kettle black. I’m angry. I want to take it out on someone. I am usually a lot more reserved than what my actions showed last night but that was the final straw. Maybe my calling that man a jerk was his last straw? I have no way of knowing. Maybe he just got dumped. Or his mother never loved him. Or he just lost his job. Or, maybe he was truly just being a jerkasaurus. I will never know.

Regardless, my two words that I yelled at him should have been “LOVE YOU!” instead of my paltry comeback. I’m sure we looked like two idiots on the streets of NY, yelling F*ck you at each other. But maybe we just looked like two Natives. I mean, really. “Eff-you” is probably considered a completely acceptable greeting here in NYC.

And had I been yelling “LOVE YOU” as a retort to his “EFF-YOU”, I may have been taken in for drug activity. Who on earth responds like that except the drug-infused weirdo from Colorado? I guess I shouldn’t beat myself up over it. After all, “When in Rome…” . Ben still loves me and thinks I’m a delicate flower.

But when someone blocks my path and refuses to move, watch the “eff” out.

It’s “Cow Appreciation Day”

Having been born in North Carolina I am not a true native of Central Ohio, but since I spent the majority of my formative years 22 miles east of Ohio’s Capital, I know a bit about cows. The family of one of my very best friends in grade school ran a dairy farm. I experienced my first kiss playing spin-the-bottle in a barn where cows were present (and I’m not talking about any of my former classmates). We accidentally set some cows free at an infamous middle-school slumber party. And while I personally cannot cop to any cow-tipping adventures, I’m sure many of my schoolmates could.

Did you realize that millions of dollars are being spent to study the emissions from burping cows? It’s said that a herd of 200 cows turns out the annual equivalent amount of methane to the energy produced by a family car being driven 111,850 miles. And you thought their piles of poo were enormous! Cows are leaving a carbon footprint the size of Texas. But at least we’re figuring this stuff out, right? I’m so glad to know that all these research dollars are being spent so wisely. I mean, cows burping. Who woulda thought THAT was contributing to the destruction of our world as we know it?

Really, though. I don’t give a pile of cow poop.

I’m stunned by what people care about these days. I know we all have our “causes” and things that we’re passionate about. And before my son was diagnosed with neuroblastoma I cared about things like cows. And animal testing. I was against it. I used to be a member of PETA back in my idealistic days as a social worker. I just wanted the world to be a happy place. I wanted to take care of all the schizophrenics AND stop P&G from shaving the eyeballs of bunnies to ensure their razors worked. (I know! Gross!)

The irony of it all is the simple fact that my son is lying on a bed in a world renowned cancer center receiving a by-product of a mouse. These mouse antibodies hopefully hold the key to what will save my son’s life. It’s painful. It’s horrible. It’s hell. And I’m sure his screaming puts out more emissions than a herd of 200 camels (this is worse than 200 cows because camels have two stomachs). So, sorry about your luck, little mouse. We need your antibodies to save my son. I do believe I would have been against this back in my idealistic phase (and before I had children), but now? Screw it. I’ll kill the mouse myself in order to save my son. I mean, if I can drive a hypodermic needle into my son’s leg over and over again I can certainly kill a mouse. I’ve really grown in my ability to perform ridiculously disgusting feats.

So, I think that we should drop all funding for figuring out emissions from cows belching because, as I type this, I am listening to room after room of children screaming in pain. Crying for relief. Pleading for God to help them. And before my son was put into a pain-med-induced sleep, he was one of the children who was screaming. Let’s focus our research money on getting these kids WELL! We know that it can be done. It takes determination and some strong support of people with BIG money. We saw it happen with AIDS research. Billions of dollars and tons of testing later, people can live normal lives with an HIV diagnosis. Aren’t these kids worth the same dedication? Isn’t my son worth it? There is nothing as heart wrenching as watching what I’ve seen over the past week. Trying to comfort my son as he screamed “STOP THE PAIN!” and “WHY, GOD?” and “I HATE NEW YORK!” I told him that once we’re done with all this antibody hooey we ain’t never coming back to this crazy town.

It’s maddening that while I plead for my son’s life I learn that millions of dollars are being spent on measuring cow emissions. And here’s another one: The National Institute on Alcohol Abuse and Alcoholism invested $102,000 in discovering if sunfish who drink tequila are more aggressive than sunfish who drink gin. Really? I just want to inject these idiots with mouse antibodies and deny them pain meds. I know. Not very PETA-friendly of me.

All of this is a big pile of cow poop. I’m tired of watching my son trudge through it and I’m tired of trying to clean up after it. Stupid cow. I’m just so tired. So very tired.

It’s Tuesday

It’s only the second day of antibody therapy and already my brain is complete Jello. When I turn my head I can actually feel the gelatinous mass quiver inside my cranial cavity. I wonder if my Jello-brain is a pretty, decorative molded shape or perhaps a delicious flavor? Doubtful. It’s more likely that my Jello-brain consists of unflavored gelatin and is very watery – like it’s been left in the back of the fridge for too long.

I ain’t joking. My brain is Jello.

Yesterday absolutely sucked. I always have some anxiety revolving around anything “new” in Ben’s therapy and despite talking with folks about how their kids handled this 3F8 antibody, there’s just no knowing how your kid will react. I was prepared for pain – and Ben was prepared for pain – we just didn’t realize how much. And for how long. I thought that once the infusion stopped that the pain would stop. How wrong I was.

So. I snuggled on the bed with the Bean when they told me the 3F8 infusion had begun. I wanted to be right there. Ready and waiting. Able to soothe as soon as he needed me to. As we were lying there he said, “Mom, my tummy hurts.” I started rubbing around his belly button when he said, “No, it’s much lower… aaaaaaaaaaaarrrrghhhhhhhhhhhhh!” The last bit of this sentence not only scared the crap out of me but had Ben shooting up off the bed and screaming at the top of his lungs.  He flopped like a fish out of water, gasping for relief but not able to find it.

I’ve never seen – or heard – anything like it, let alone deal with the fact that it was coming from my son. I got off the bed and started trying to figure out where his pain was and what I could do to fix it. He cried that his lower back and bottom hurt. The nurses asked if he wanted ice or heat for the pain. He cried “Heat!”. We popped heat packs and started applying them to his back. That’s when he screeched “No! Ice!” We dropped the heat packs like hot potatoes and started popping ice packs. I didn’t know how these packs worked initially, which frustrated me to no end, but once the nurse showed me her “grab and twist” method, I quickly became an expert. Popping the ice/heat packs was the only fun I had all day. It kinda gives you the same satisfaction that popping bubble wrap offers.

Ben screamed. A lot. He cried for someone to help him, which made me feel ridiculously inept. The nurses and I rode out his storm of pain until he fell into a pain-med-induced sleep. We held the ice packs on his back until we were sure he was asleep. Then I fell into the chair, dumbfounded by what had just happened. I thought that since the infusion was over that the pain would subside. That’s when Ben started experiencing neuropathy in his feet.

I was sitting in the chair watching him when his eyes opened and tried to fix on me. I leaned forward and said his name, trying to be reassuring that I was right there and ready to do all I could. It was as if he was looking through me toward something far behind me. The look on his face was something that I will never be able to explain. His eyes kept widening. His brow furrowed. His mouth drew thin. It was like he was seeing the scariest thing on the face of this earth but he wasn’t looking at anything at all. Then he began to shake his hands like he was trying to swat at a bug. Like he was trying to discourage a bee from stinging him. And then he started crying hysterically that his feet hurt beyond belief.

This neuropathy is not a super-common side effect. At least, they don’t pre-medicate everyone for it. It can happen. It’s been known to happen. But it’s not something that happens to all kiddos on this 3F8. Of course, it happened to Ben. The pain kept waking him up and the only thing that would help was putting heat and pressure on his feet. And that wasn’t even really all that helpful.

He cried so much yesterday. He pleaded for God to help him. I pleaded for God to help him. I cried so much yesterday.

We finally left the hospital around 5:30. I think. It may have been closer to 6 pm. I don’t know. As we were leaving, our nurse said “see you tomorrow” to which I answered “I’m not bringing him back.” She chuckled. I gave a half-hearted chuckle and kept walking, pushing my passed-out Bean in a wheelchair.

Once we got back to The Ronald I put him in bed. He couldn’t get comfortable and would intermittently yell out that he needed his feet massaged. I popped some more hot packs and wrapped ace bandages around his feet to keep the heat focused on where his pain was.

It was right before he fell asleep that he needed help going to the bathroom. I carried him in and helped him stand since the pain meds had made him very unstable. He was very shaky and didn’t want to put any weight on his feet. As we stood there he said “Mom, I’m ready to meet God now. I wish it were my time.”

Finally, about 1 AM, he fell into a sound sleep. I stayed up an hour or so later, shell shocked. What had just happened? And how will we make it through the next day? And the next day? Four more days of this horrible pain. And that’s just the first round.

At that moment, I realized the day I believed couldn’t get much worse had completely broken my heart.

It’s “Pecan Pie” Day

I despise nearly every sort of pie with the exception of pecan. Pecan pie is deeee-licious. I think it also has the highest caloric content as far as pie goes and that (more than likely) contributes to my interest in this particular flavor. And I’ve always wondered about the pronunciation of “pecan”. Is it proper to say “Pee-kan” or “Pi-kahn”? I usually say “Pee-kan”, probably because that’s how they say it in the South. And being 1/2 Southern myself, well, I can go back and forth between pee-kan and pi-kahn if I want to. It’s my inalienable right as a half-breed. I’ll say pee-kan in my Southern circles (as well as in my Western “cowboy” circles) and pi-kahn while in the company of Yankees.

I googled pecans before writing this post. There are quite a few sites that offered information but I was most enamored with www.ilovepecans.org. It gives you all the information you would ever need about pecans, including recipes that makes use of pecans all year long (it’s not just for Christmas anymore). You might be interested to know that it would take 11,684 pecans stacked end to end to reach the top of the Empire State Building here in New York City. I know what I’ll be doing later today.

Speaking of nuts, that adequately describes my mental state right now. As I try to focus on getting this post written before Ben starts his first round of 3F8 antibody, I’m listening to the kiddo beside us scream out in pain. He must be about three years old. It’s his first day of antibody treatment, too. He speaks Spanish so I can’t understand his words, but his screams translate very well. He’s inconsolable. His parents are scrambling to soothe him. The “dance therapist” is attempting to distract him. The nurses are medicating. But the fact remains: this therapy sucks. And we’re next. Ben is zoned out, watching Scooby Doo, trying to avoid reacting to the screaming boy.

He ain’t no dummy. He knows what’s coming.

And here we go. They’re pushing the first bit of 3F8 into him right now.

Pray. Please.

It’s July 8th

“Yay! Ben! We don’t have to come back here for an entire YEAR!!!” I grabbed his small hand in mine as we walked down the hall away from the room where he had just completed his MIBG scan. It had been six months since his prior scan and report of “no evidence of disease”. Dr. Greffe told us at our semi-annual appointment that if these scans came back clean that we would move to annual scans. My system heaved a huge sigh of relief as we moved further away from the world of neuroblastoma.

A whole year, Ben! We don’t have to come back here for an entire year. I smiled as I held that little hand in mine, all but skipping with joy down the hall. Ben, being a newly minted eight-year-old, didn’t really seem to care about the news I was basking in. He had nearly forgotten about  the chemo, surgeries, radiation, bone marrow transplant, and the months of painful antibodies and huge horse pills he learned to swallow at the tender age of three. This grueling therapy had robbed him of being a toddler but it had kept him in remission for four years. Dr. Greffe said that it was uncommon to relapse this far out. Dr. Greffe said that we’d be moving to annual scans. Dr. Greffe said…

Dr. Greffe said he’d call later with results.

I was laying on my stomach on the bed, letting “scanxiety” release from my body. This is a phenomenon I can’t explain, this “scanxiety”. Those in our “position” know that scan time is something that is inevitable and you always breathe a sigh of relief when it’s over and everything’s clean, but there’s always that anxiety that flows through the patient, the caregiver, family and friends that there might be something lurking. Something set on destruction and completely willing to explode and ruin life as you know it. I always worry during scan time. It can’t be helped. This is my baby we’re talking about, after all. My precious, wonderful, sweet son who was fighting with his sister downstairs as I released my “scanxiety” in the best way I knew how: by doing absolutely nothing.

Becky in radiology said that his scan looked good. Becky loves all the neuroblastoma kids. She has a bulletin board filled with pictures of neuroblastoma kiddos she’s known over the years, and Ben’s kindergarten and first grade picture were posted up there on her “board of fame”. Ben was the kid she pointed out to other neuroblastoma families as they dealt with their own “scanxiety”. I never heard her say it, but I can only imagine her words, “See this boy here? Four years he’s been clean. There is hope. Kids do survive this horrible disease and Ben is one of them.” Becky said his scan looked clean. She knows how we as parents suffer through scan time. She told us with as much authority as she had that his MIBG scan looked good. Becky said “See you next year, Ben!”. Becky said….

The phone rang shaking me out of my attempt to clear my mind. Caller ID said it was Dr. Greffe. I picked up the phone despite the cacophony of the ongoing battle between Ben and Madeline downstairs. I expected that the phone call would be very short. All he was going to say was that everything looked good and that he’d see us in a year. Right? But Dr. Greffe said…

“Sarah, the CT scan shows that Ben has a mass behind his heart.”

That metallic taste that goes hand in hand with a rush of adrenaline overpowered my mouth. Stunting my ability to speak. Stunning every sense I have. My mind swirled with question after question. It reached and tried to grab hold of all the positive things that Dr. Greffe had said. That Becky had said. That statistics had said. What had they said? What was he saying? Are you telling me that Ben’s cancer is back? BUT YOU SAID…!

I heard what he was saying. Behind Ben’s beautiful, wonderful, kind heart, there was a mass. Something growing. Something that didn’t belong there. Something trying to destroy my son. Wait. What are you saying?

Without fully realizing what I was doing, Matt came up behind me and put his hand on my back. I guess I hadn’t said anything at all since my answer of “hello”. Matt must have realized that I was speaking with the hospital. While I hadn’t made any audible statements my actions said it all. I had sprung up out of bed, stumbled to the railing of the stairs and was holding on for dear life. I was doubled over. I can only imagine what my facial expression was.

“What are they saying?” he whispered. He took the phone from me and turned on the speaker. Since I couldn’t say anything, Matt announced that he had switched the phone to speaker and needed him to start the conversation over again.

Dr. Greffe said. He said. He said that there was a mass behind Ben’s heart. He had already taken the liberty of scheduling an emergency biopsy for the following day. While they couldn’t confirm that the mass was definitely neuroblastoma, they knew it was something that needed to come out right away. Matt and I sat on the floor in Madeline’s room. Surrounded by pink walls. A fluffy canopy bed. Bright. Girly. Pretty. We faced each other. The phone was laying on its back spewing terrible awful hideous information at us in the midst of Madeline’s sugary sweet room.

We remained silent as we listened to Dr. Greffe give us details of what needed to happen the next day. No eating after midnight. Check in at 0:00 hours. Surgeon will go in through Ben’s back. Plan to stay overnight. We’ll do everything we can. I’m sorry.

Dr. Greffe said he was sorry.

The ice cream cake we got as a celebratory “clean scan” reward sat melting on the counter as I went downstairs to do what had to come next.

I said, “Ben, please come to me.” I sat down on the couch and motioned for Ben to come over. Ben thought he was in trouble for fighting with Madeline. He started to defend his actions as I enclosed him in my arms. Holding him. Hugging him. Getting ready to prepare him for what was coming next.

I said. My God. What do I say? How do I tell this wonderful, sweet boy about what comes tomorrow? After all, I just finished telling him that we didn’t have to go back to that hospital for a whole year. I’m his mom! He trusted me! Dr. Greffe said. Becky said. I said.

What do I say?

“Ben. The hospital just called. They said your scans showed a mass behind your heart.” My arms encircled the small frame of his body. His weight a slight 40 pounds on my lap. My eyes staring into his big brown ones as I told him of what was going to come next. I watched as his brow furrowed. I could see the questions swirling in his head as he processed the news of what I was telling him. More pain. More scars. More yuck. But I wasn’t prepared for what he asked. What Ben said.

“Mom, am I going to die?”

And as my mind scrambled for what to say to my beautiful eight-year-old son, my mouth took over.

“Ben, I sure hope not. We don’t know what’s going to happen but I can promise you that we’ll fight with all we have and go wherever we need to go and do all we need to do to get you through this. I will never leave your side.”

That’s what I said.

And one year later, here we are. We’re still fighting. We’re going where we need to go. And I’m never leaving his side.

We’ll get through this kiddo. And that’s all I have to say.