Whac-a-mole

My brain wants to shut down and my body wants to give up. I can’t make them connect right now and despite trying to keep afloat with humor and a “we’ll beat it again!” attitude, I’m concerned that I’m running way too far past empty to keep up this charade.

For those of you who don’t know, Ben has relapsed again. SIX times my son has battled this insidious fucker. I sincerely don’t know how he keeps going. I truly don’t. He continues to be so brave and strong. And while I try to keep a brave face a lot of the time, well, I’m just out of energy. My emotions are completely exposed like raw nerve endings most of the time.

I noticed right before we left for NYC that Ben had turned a picture of himself around to face the wall. This picture showed his wonderful and insightful smile, those deep and knowing eyes, and a completely bald head. He looks that way more often than not but he had reached a point where he was tired of looking at that image. He admitted that he was the one who had turned it to face the wall because he didn’t like looking at himself when he looked like a cancer patient. I honored his request and took it down because I just don’t ever want him to feel unhappy. Besides, we were in the throes of an amazing winning streak against cancer. We felt the vaccine was working and was even scheduling an appointment on getting his port removed when we returned to Denver. THAT was an epic milestone! To not need his port any longer was thrilling to me… and to him. However, we all know now that port removal won’t be happening anytime soon.

This trip to NYC was a regularly scheduled visit. He needed injection #5 of the vaccine and a set of scans. My sister came in to NYC for the day, so we were sitting together on the plastic couch in the waiting room while Ben was undergoing his bone marrow biopsy. I usually stink at having people sit with me during procedures because I seem to be more comfortable in my own head. It’s no news that I’m an introvert and tend to want to handle things on my own, but having her there was really nice. So, when I heard Dr. Kushner talking about Ben Brewer, I turned to wave him over to us. After a brief introduction to my sister, he simply said it: “There’s a new spot.” As that information was trying to penetrate my brain, I worried about how I was getting ready to lose it in front of every person in that waiting room. I kept nodding my head and trying to listen, hoping I was catching what needed to be caught, but everything was buzzing. And I was sincerely worried that I was going to scream right there in the middle of that busy waiting room. After the news was delivered, we were able to go into an office where I did lose it.

Now, I’ve been doing this for a long freaking time. And maybe I should be used to hearing that my son’s cancer has returned. But let me make this very clear: I WILL NEVER BE OK WITH CANCER ATTACKING MY SON. Not the first time, and not the sixth time. And if there’s another time, I won’t like it then either. I understand that I’m “old hat” at this, but it never gets easier. NEVER. And I am offended by people who have said “Oh, it’s just one little spot” which, I shit you not, is what one of the nurses said to me.

Fuck that. ANY cancer attacking my son WILL NEVER BE OK.

NEVER.

So, they gave us a plan right away. And being the compliant person I am, I agreed. Of course, this was all done with Ben’s consent, but my thought was get that cancer out of there NOW. Surgery was scheduled for two days later and a whole extra shit-show of incompetence happened after that. I am not going to go into details here but let me say this: We have officially broken up with Memorial Sloan Kettering for treatment.

This makes me terribly sad. In 2010, Dr Kramer, who was heading up the relapsed neuroblastoma study at MSKCC said the following: “I believe your son is curable.” It was what I had been waiting to hear for years. And, for some idiotic reason, I believed her. I hung a lot of hope on those words. Now, seven years after that initial relapse and giving this institution chance after chance after chance to treat my son with some dignity, since he relapsed on their “Holy Grail” of therapy, there’s no need to continue. It just doesn’t make sense.

On our flight home, Ben leaned into me and said “We travel here to receive CARE. It seems pretty clear to me that they don’t care about me. I’m just a number to them.”

We got home on a Friday night. Ben was coughing quite a lot, which could have been his lung’s way of trying to get stronger post surgery, but since it persisted through the weekend I took him to Denver Children’s Monday morning. We met with Flori, his usual nurse practitioner and SHE HAD NO FUCKING IDEA THAT BEN HAD RELAPSED! She didn’t know that he had surgery over a week ago. She had no information. So I had to explain where it was found. I had to explain the procedures he had just had. I had to explain what the next steps were. I had to call MSKCC to get the records transferred. Of course, I was sobbing throughout the entire ordeal because WHY WOULDN’T THEY HAVE THE COMMON COURTESY TO LET HIS HOME HOSPITAL KNOW WHAT WAS GOING ON????

Dr. Macy came in to talk with us and was very frank. She asked why we would return to receive a therapy that didn’t work. And given all the stuff that went wrong during that visit, why would we want to keep taking on their inability to offer my son any quality of life.

And that’s what shocked me into understanding. They don’t expect him to have any quality of life. Ben said, “They’re probably just surprised that I’ve lived this long, so they just throw whatever they can at me to see if it works.”

Does Dr. Macy think the cancer will return again? Yes. She expects it to keep popping up here and there for the remainder of his life. And then she threw in the “whac-a-mole” comparison, meaning that whenever it does come back, we’ll hit it with whatever study is available. Keep beating it down whenever it shows its ugly head.

We’ve also learned that the radiation therapy they were planning in NYC was nothing like what the radiologist here in Denver would do. NYC was basically going to throw five big doses at him, where Denver said it would be safer to do a lower dose over 12-20 visits. Glad they forced us to get a second opinion.

I don’t know what’s going on there. And if they do eventually find the golden ticket that cures neuroblastoma for good, then Ben will be able to receive it. They can’t deny him treatment just because I’ve called them on their incompetence. But I have to say that I am highly distressed. It’s taken me almost two weeks to be able to say anything at all. I’m feeling very defeated for a variety of reasons.

I’m sad that this “lifeline” didn’t pan out and did more holding us under water than trying to keep us afloat. I  cannot say this has been everyone’s experience, and I’m sure there are plenty out there who are extremely satisfied with their experience at this institution.

Good for them.

But, for now, we’re going to navigate treatment here in Denver.

We’re home.

Despite all the hard work I’m doing on changing my perspective, there are days here and there where I just crumble like a delicate butter cookie under the weight of an 18-wheeler wearing snow chains. Yesterday was one of those days, so today I’m sporting what I’ve dubbed a “sad hangover.” I’m all achy and fuzzy brained, low on energy and carrying around an impending sense of doom like it’s a glorious fashion accessory.

I never did learn to accessorize properly.

Now, the new, “kick-ass” me would try to slough this off as soon as possible, turn on my inner light and inspire all of you out there to keep on trucking despite the circumstances. Today, however, I’m on slo-mo through a big bowl of coagulated oatmeal that someone left on the counter with the hope that somebody else will clean it up.

Ben noticed immediately that one of my Christmas bulbs was burned out, which was causing all the other bulbs to underachieve. I was sitting on the couch owning my sadness when Ben leaned over and gave me a big recharge on my batteries. He hugged me hard, looked deep into my eyes and started singing the chorus from a wonderful song from the Broadway musical “The Book of Mormon” called “Turn it Off.” Now, I’m going to post a link to a YouTube video of this snappy little tune, but I must insist that you only watch if you have a heightened sense of humor and appreciate making a complete mockery of difficult life events. Oh, what am I saying? Y’all read my blog… I think you’re on board with how I roll. If you choose not to watch the video (which is my official recommendation) basically all the song is saying is to bury any and all uncomfortable feelings and go on with your day. It goes against everything I’ve been so diligently working on, but him singing that song to me made me laugh. And that’s what I so desperately needed.

Warning: Highly inappropriate and completely offensive content follows. Enjoy.

And there’s freaking TAP DANCING! We all know how well I respond to tap dancing.

What’s got Sarah so blue and in need of “turning off” her emotions? Well, Ben had an appointment with the endocrinology department at Children’s yesterday. If you’re not familiar, or simply don’t remember basic biology, your endocrine system is made up of glands that produce and secrete hormones. These hormones regulate the body’s growth, metabolism, and sexual development. Now, I am well aware of what Ben’s doctors told me when he was first diagnosed in 2004… with the amount of therapy Ben will endure, he will most likely be sterile. He was two years old at the time, so I gently rolled up this tidbit of information and pushed it deep down into a box of things I don’t want to think about, and there it stayed until yesterday.

At age 15 1/2, Ben is 4’11” (or 59 inches) and weighs 72 pounds. Here’s a chart of what’s typical for boys:

Typical Height and Weight Charts
Age Range Height Weight
12-13 years 58 – 62 inches 85 – 100 lbs
14-15 years 63 – 66 inches 105 – 125 lbs
16-17 years 67 – 70 inches 130 – 150 lbs
18-20 years 68 – 70 inches 150 – 160 lbs

This is probably one of the hardest pieces for him to deal with. Well, discounting the multitude of friends dying from the same disease and battling a relentless bully every single day. People who don’t know him assume he’s about ten. For a 15 year old, that’s freaking humiliating. I mean, he’s SHAVING for crying out loud! He’s studying driver’s ed! I have hoped and prayed for the BEST for Ben and I can’t find any solace in the fact that YES, he is getting ready to learn how to drive but DAMMIT if he still doesn’t fall within the parameters of needing to be in a car seat! NOT FAIR! (it’s okay if you chuckled at this… just bringing levity to the whole scenario.) I mean, I didn’t need to wear a bra until college… generally, my people are late developers, but it doesn’t matter when you’re so acutely aware of your physicality. This age is tough for any kid, let alone a kid like Ben.

And here I am tap dancing circles around him trying to cheer him up after the hostess asks if he needs a kid’s menu. I mean, didn’t she see my desperate expression of “PLEASE don’t ask if we need a kid’s menu!” I’m not sure exactly what that expression looks like but I like to think it’s enough to get someone’s attention. Maybe I should practice in the mirror? Or maybe I should simply stop trying to shield him.

Because, here’s the thing: He can handle it. Yesterday, Ben finally learned that he is sterile from years of intensive therapy. His doc was talking about all the testing they were planning to do yesterday to check his bone age, thyroid levels, etc… fertility included. My brain started buzzing and I shot the doctor my “look” (that clearly needs work) of “PLEASE don’t tell him right now that he’s sterile.” She didn’t catch it. I put everything on hold and felt odd about asking Ben to step out of the room because we tell him EVERYTHING! He deserves to know! But for whatever reason, every cell in my body revolted against Ben knowing this bit of information. It hurt me. I don’t know why, but it hurt me. I didn’t want it to hurt him, too. Ben gave me a look filled with curiosity as he walked out of the room. I felt silly about my behavior but quickly went on to explain that he didn’t know about the whole infertility piece. I wasn’t ready to say it out loud.

The doctor consoled me and said that she was more than willing to guide us through that discussion with him. Well, it didn’t matter, because that kid was outside the door listening to the whole thing. Ben needs hearing aids, MY ASS!!

We talked about it on the way home. I cried. He didn’t. He absorbed it and will deal with it when he’s ready. While I was driving, he grabbed my hand and filled me in on all the wonderful things that he won’t have to deal with due to his being infertile; like he’ll never hear that he knocked up his high school sweetheart… he’ll never hear Maury Povich say “You ARE the Father!”… and he’ll never be a part of Mtv’s “16 and Pregnant” storyline.

And then, as we were laughing over his hilarious comments, my beautiful son said the following: “There are many ways to have a family, Mom. I’ll figure something else out.”

My God, do I love this boy. He continues to teach me every single day on how to deal with adversity.

I’m just sorry he’s an expert on it.

 

 

Love is the Answer

I know, it’s been a while. I decided to take some time off to work on myself. The beautiful thing is that it coincided with Neuroblastoma giving Ben a pretty big break so I’ve had some extra time.

As you may remember, I’ve been working on obtaining my yoga therapy certification. I started the final phase of this journey this past June and have been gently unfolding ever since. I guess it’s been my version of Elizabeth Gilbert’s bestseller, “Eat, Pray, Love: One Woman’s Search for Everything.” And while I haven’t found everything, I’ve certainly learned a lot about who I am. Earth shattering things. Well, at least they’re earth shattering to me.

I didn’t realize how terrified I was to simply be “seen.” I’ve always been one to hide. Hide from friends. Hide from family. Hide from daily life. The further I could sink into a background, the safer I felt. It wasn’t fun there, but at least I felt safe. It begged the question: Why is “safe” so important to me? The past thirteen years of my life has been fraught with unsafe things… the constant thought of potentially losing of my son, the uncertainty of love relationships, tremendous amounts of loss, feeling the distance between myself and people I hold dear in my heart… always blaming myself for being “weird” or “quirky” and expecting – no, demanding – for people to not take me very seriously. A sense of humor is much easier to deal with than feeling vulnerable and unsafe. And if I ever let any of that vulnerability seep out, I had to quickly cover it with something to make YOU more comfortable. Meanwhile, it did absolutely nothing for my mental health.

I craved a safety that I couldn’t even create with every defense mechanism that I had in my bag of tricks. So I decided to change course and take a look at perspective. Now, THAT was something I had control over. I could look at something from any point of view that I wanted – even the crappy stuff in my life. And I’m learning to continuously search out the good in every situation and discard what serves no reasonable purpose.

So, I’ve sat back and have watched what’s been happening over the last few months. There’s no lack of hate out there… this latest election showed the hideous side of many people, spewing anger about the horrors that will happen if either side won. It’s been exhausting.  I rarely share my political views because I don’t think of myself as being especially politically astute. And I’m really of the mindset that my vote doesn’t count. I DID vote, but I’m pretty sure my ballot is still sitting somewhere in Aurora unopened. I don’t have faith that the political system is on the same spiritual awakening journey that I’m currently navigating. It all feels so out of control and while I used “my voice” to vote, I’m not confident that anyone’s voice was truly heard. Honestly, though, it’s been so hard to hear anything at all over all this hatred. I’m very concerned about our future as a country, especially if we can’t even simply be kind to one another. I’m planning to use what voice I’m developing to spread love and kindness. Any other way just doesn’t make sense. And any other way just doesn’t seem to matter.

The biggest “a-ha” piece that I’ve learned so far has been the fact that I am not defined by anyone else’s thoughts. YOU are defined by your thoughts, but I am only defined by mine. And you are not defined by my thoughts, either! Isn’t that refreshing? For whatever reason, that brought a tremendous amount of comfort to me. It might be that this is a super basic way to look at life, but it makes a lot of sense to me. And I’m choosing to look at it all through a lens of love. Because of this, I feel that my relationships are becoming stronger because I feel stronger. And, I am not constantly worrying about what you think of me. Think what you will. You’re going to anyway!

But know that whoever you are, from my perspective, I think you’re amazing. Despite your faults. Despite what you think of me. Offer the light you have instead of the fear that so often pushes through first.

Love is the answer.

 

Down Dog

You might have heard that our beloved Yoshi – a completely adorable, yet ridiculously unintelligent dog – died this past April after a run-in with some raspberry flavored IceBreakers sugar-free gum. I had no idea that the Xylitol featured in this sort of gum was toxic to dogs and would most likely result in liver failure – and such is the demise that sweet Yoshi met after eating an entire container of the stuff. It broke my heart to hold my sweet doggy in my arms as he peacefully drifted off to his Rainbow Bridge or Valhalla or wherever less-intelligent dogs may go when their earthly life ends. And I thought to myself that I would never be ready for another dog. Ever. He was just that awesome.

So, three weeks later as we were walking into PetCo to get food for the other members of the pet squad, we had to pass by a long line of cages holding adorable foster puppies looking for their forever home. I lowered my gaze so I wouldn’t have to make eye contact with their big brown puppy eyes, knowing that some other sucker would come along shortly to offer them a loving environment. As I was putting my hand up to the side of my face to act as a blinder to save me from their terminal cuteness, I heard someone call out my name. It was my wonderful yoga friend, Becky, and damn if she wasn’t holding one of these adorable puppies. She had been fostering puppies for an out-of-state rescue group and was very effective at her job. She twisted my arm and MADE me hold a puppy.

I want the record to show that it was completely against my will.

 

Needless to say, an hour later, we had a new dog. Ben decided on the name “Cody,” after our favorite NHL player, Cody McLeod. Puppy Cody is sooooo cute and has a shocking number of similarities to our dearly departed Yoshi, including his lack of intelligence.

Spring morphed into summer. Cody worked diligently on things like finding corners to pee in, torturing his chihuahua companion who wanted absolutely nothing to do with him, and taking over Yoshi’s former pastime of trying to mount the cats – cats that were still in possession of their claws. Despite their attempts to dig his eyes out, Cody never quite got the hint. He proudly displayed his lack of intelligence, just like Yoshi did.

So when it came time for me to pick the kids up from Camp Wapiyapi, (www.wapiyapi.org – look it up, it’s AMAZING!) my heart sunk a little because it was tradition for me to take Yoshi along for the ride. He LOVED car rides, especially when it resulted in reuniting with his favorite Ben and Madeline after a week’s absence. The camp the kiddos go to is in Estes Park, about two hours from Denver. I quickly remembered that we had a new puppy who would probably LOVE to take a car ride with me! I loaded him up in the front seat with a blanket to sit on and off we went.

About 10 miles into the trip, I got on the interstate. Up until that time, Cody had been content sitting shotgun, but once we hit the highway, it became a different story. I’m not sure if he was freaked out by the sound of the road or what, but he started whining. I tried to soothe him with loving scratches behind the ears and lulling him with my lowered voice with words like “it’s ok, puppy. Just relax, Cody.” but he wasn’t having it. He crawled up between the headrest and my neck, desperately searching for safety. He sat there for a couple of minutes, incessantly making the most pitiful noise I’ve ever heard.

And that’s when the drooling started.

Within moments, the back of my neck, my shoulder and arm were covered with puppy drool. For those of you who know me, you know I can handle blood. I can even handle poop. But the one reason I could absolutely positively NEVER EVER be a nurse is because I. cannot. handle. vomit/bile/drool. And I have a very sensitive gag reflex when it comes to such things. So, as I looked like a cat trying desperately to dislodge a hairball from my throat with a dog stuck behind my neck drooling all over me, I knew it was time to pull over. I moved Cody back to his blanket. I regained composure and considered turning around to take Cody back home, but knew that would be too time consuming. I had to pick up the kids by a certain time, turning back now would make me incredibly late.

We got back on the road. The whining picked up where he had left off and the drooling increased. I patted the top of his head, trying to soothe him but also trying like crazy to avoid the drool. It went on like that for miles. He would lift his cute little puppy head off the blanket only to leave a disgusting line of drool hanging from his mouth. It was repugnant. Shuddering with disgust and trying hard to not puke, I pulled off the highway and onto the mountain road that leads to the camp. For a few moments, Cody relaxed. He stopped whining. I thought that it was, indeed, the noise of the interstate that had him so worked up. Whew. Safe at last.

As I was mentally mapping out a route home that would avoid all highways, I had to veer into the oncoming lane to avoid a bicyclist. I’m all for exercising but I believe the act of bicycling up a mountain road at seven in the morning is a bit show-off-y. Of course, as I passed the mid-line of the road, the rumble strips meant to alert you as you’re steering off course scared the ever-loving hooey out of Cody. He howled as we crossed over the line, again and again, as the amount of crazy bicyclists increased as we traveled further into the mountains.

I apologized repeatedly as we passed yet another bicyclist. And another. And another… “I’m sorry, I’m sorry puppy, I’m so sorry,” I placated as he continued to howl and drool each time we passed over the rumble strip. He constantly changed positions. At one point, he was upside down with his head hanging backwards over the seat. It reminded me of this one time in college – after experiencing what one bar called “bucket night” – the evil effects that alcohol could have on a fresh-faced kid like me. Maybe if I lay down with one leg up in the air, I won’t feel nauseous? Or if I hold on to the chair rail, the room won’t spin as fast? Please, baby Jesus, please let this pass. I will never drink again. Ever. I imagined this was what Cody was doing as he continued to drool and howl at the inhumanity of it all.

After two hours of his howling and drooling, we arrived at the beautiful location nestled in the mountains. Cody leapt out of the vehicle and ran towards the first person he saw, probably thinking that someone would save him from the insanity he just endured. The moment the kids at camp saw him, the Oooohs and Aaaaahs started… “Ohhhh! what a cute puppy,” and “Can I pet him?” until he got near them and they discovered that he was soaked from all the drool. The ooohs and aaaahs quickly turned to ew, gross, as a completely gooey dog tried desperately to jump into someone else’s arms.

We said our goodbyes and loaded back into the vehicle, Ben and Mad snuggled Cody between them on a new, less drooly, blanket. I think he passed out from the stress of it all since he didn’t make a peep the entire way home.

And he hasn’t been on a road trip since. I don’t think he ever will again.

Moral of the story: Don’t be a showoff and ride your bike in the mountains. Just kidding. However, do make sure your dog can handle the car before taking him for a four hour ride. I’m sure my car will never recover from all the drool. And neither will I.

 

 

 

For my Sister

My dear, darling Sister,

Today is going to be very difficult. Attending Anthony’s graduation without his being there has to be another knife in your weary heart. I’m sorry I’m not there to celebrate his achievement and hold your hand as this milestone he worked so hard for passes you by without him in attendance.

I’m so sorry. I’m trying really hard to find the words but I’m struggling. I always have words. Something to make you laugh, something to bring a bit of levity. Comfort. Anything to take the sting of this immeasurable pain away. Words have always been my friends, but not now. I have nothing that will make this better. The loss of your sweet, tender-hearted son is something that leaves me utterly speechless.

I’ve started several different posts about Anthony since he left us in April. I want the world to know how special he was. I want them all to know about the comfort he brought to my son during so many years of ridiculous therapy. How many times has your family dropped everything to come to our side when Ben was ailing? Countless. Your thoughts and prayers and support have been a beacon for me over the past 12 years of Ben’s illness. Anthony was one of Ben’s very best friends. We all know that Ben is pretty good at being alone, but the relationship that he and Anthony shared was… magical. 

You raised a good boy, Sissy. You did a good job. You loved him, cared for him, supported him, encouraged him… all the things a loving parent should do. I know he didn’t doubt that. What he did doubt was himself. And that’s something you did not have the power to change. When someone has in their mind that they aren’t worth it, it’s hard to turn that around. It’s something that needs to be learned on their own. Unfortunately, he didn’t give himself enough time.

When I was Anthony’s age, I could only hear the negative. Words came into my brain and filtered through my crappy self-image, unable to refine into anything fortifying. While I’ve learned a lot over my 47 years and have decided that I’m ultimately not worthless, it was a very difficult battle. Some of us are just wired that way. It’s not anything any amount of parenting or therapy can change. It has to be done from within. I recognized some of the same traits in Anthony, and even addressed them in a letter I wrote him two years ago for his sixteenth birthday. We were a lot alike in many ways, using our humor to cover up how bad we were hurting, retreating when things got too tough, beating ourselves up for every damn thing, whether we had anything to do with it or not. We had the same affliction of simply feeling too much and not knowing how to handle it.

 

I don’t know everything, Sissy, but I know this: You were the perfect parent to suit his needs. You did your job well. Knowing that you always wanted to be a mom, there was no question that you’d excel at your job. Gabriella and Anthony were blessed to have you as their mother. You provided them with the best and most important thing a mother could give – your heart. They never lost sight of that.

I also happen to know a thing or two about low self-worth and how damaging overwhelming depression can be. It doesn’t matter what anyone says, if you don’t believe it, you won’t hear it. Anthony was such an empathetic young man and picked up on everyone’s emotions. His first thought after meeting someone was, “I wonder if they liked me?” Because he’s painfully aware of people’s thoughts and feelings, even to eventually go to the extreme of forsaking his own thoughts and feelings in order to honor someone he cared about more than his own. Anthony didn’t understand his value. He didn’t give himself enough time to realize how precious he was. I’m so sorry for that.

I can’t imagine what you wake up to each morning and the heaviness you fall fitfully asleep with at night. I’ve tried to imagine it. I sincerely have. I’ve been preparing myself for my son’s death for 12 bleeping years. I know you can’t really prepare for something like that, but every day I think about the possibility of losing Ben. And how heart wrenching that would be. And how I wouldn’t want to go on. And that waking up to face another day without him would be the worst chore I could ever complete.

I guess what I’m trying to do here is bring you a tiny bit of comfort that you are an amazing mother. Your son is and will always be important to us. He added a lot to our lives, especially Benjamin’s life. I’m sad that many people didn’t get to know how wonderful he was and how dearly he will be missed.

And when they call his name at graduation today, smile knowing how happy he’d be to have completed this milestone. Celebrate it. Grieve it. Allow yourself to feel today, whatever those feelings might be. And know I’m here for you… to laugh with, to cry with, to celebrate and mourn with… I’m your girl.

I love you deeply. Always have, always will.

Love,

RaRa

Anthony

 

 

Safe Space

I sat on his bed for what seemed like hours, gazing at him and looking around his room at the few things he found important enough to display: a couple of hockey items, the plaque he was awarded from the Aurora Police Department, and then the hordes of Nintendo collectibles – his most prized possessions. Most of his down time is spent here, in his safe space, with the Nintendo green walls (the color of his favorite character, Yoshi) that I was initially afraid of when I saw the paint chip, but have grown to love because it is just so… Ben.

Being 14, if I remember correctly, is a time for separating from your parents and finding out a little bit about who you are. How pissed he must be that he has to depend on us to physically take care of him a lot of the time. He must want to run from all of it. Escape to where he can simply be 14. Maybe kiss someone he has a crush on? Skip a night of taking ridiculous amounts of meds. Tell us to ‘piss off.’ Be a little rebellious. But he never does. He seems content in his safe space, playing video games and chatting with his online friends. They don’t care that he’s bald. Some of them don’t even know the battle he’s up against. Ben’s cancer doesn’t define who he is. I’m proud of him for that.

Never once has he felt entitled because of his illness. He gets upset with me when I go out of my way to explain why he’s setting off alarms at the airport (or the Statue of Liberty, or the Denver Mint) with his radioactivity. He doesn’t want anyone to make a big deal over him. And that makes him super cool. At least in my book.

My mind was working overtime that night as I was sitting on his bed. He’d just been released from the hospital and was spending an inordinate amount of time sleeping. Healing. Recovering from the bomb he was just hit with. The bed creaked slightly as I started my retreat, knowing that he would be highly irritated that I was just sitting there staring at him. He surprised me when he reached for my hand, grabbing it with a strength I wasn’t ready for.

“Mom?” he asked, his voice wavering and slightly slurred from the mouth sores.

“Yes, sugar pop,” I answered, knowing I’d been busted doing what all kids dread their parents doing.

“Please. Tell me everything is going to be ok.” His hand gripped my wrist, holding on for comfort. For life. For things I wished I could give him but came up lacking.

Shit. He wants me to be his parent right now. He wants me to give him an answer I don’t have. Who allowed me to be an adult? That was a silly decision. Frick. Ok. Here goes.

“Ben. Everything is going to be ok. Do you know why? Because we have each other and so many people who love us. No matter what, I’m here. I’m with you. And while I have no idea what the future holds, we have the ability to make whatever it is as beautiful as we want, despite the pain you’re going through.”

Sometimes if you say a lot of words, you can sneak out as they’re processing what you’ve said. They might call bullshit later, but I had to stop the hemorrhaging. Temporarily bandaged and holding breath, holding breath, holding breath…

“That’s all that matters, mom. I have you. I’m so fortunate.” Did this kid really just say that he’s fortunate to have me? With that bullshit answer? Maybe I knew what I was doing after all? No, I don’t. I am definitely “winging it.”

“Thank you, Mom.” I felt a wave of relief flow over me. His grip on my wrist relaxed. I know he’s scared. I am, too. We all are.

The next morning I woke to the news that Delaney had died. For those who didn’t know her, well, she was a force of nature. She, too, had been fighting Neuroblastoma for several years and had made the decision to stop treatment a few months ago because her disease was progressing. She was well known for her activism, doing PSA’s for Childhood Cancer charities and spreading awareness with her infectious smile. She was even featured on a billboard for values.com with her dear friend and founder of Peach’s Neet Feet, Madison “Peach” Steiner. Peach makes beautiful hand painted shoes for kids with life-threatening illnesses. She’s super cool. from her heart

 

Anyway, we knew Delaney’s time here was limited but it didn’t lessen the impact of losing her. It was devastating. We initially made the decision to not tell Ben right away because he was still so exhausted from his latest round of therapy and was struggling emotionally. Unfortunately, we had clinic that morning and there was no way to hide it. Delaney treated at the same hospital, and it was evident that something was wrong. You don’t lose a kiddo like Delaney and not feel the whole world mourn. The heartbreak was palpable. So I told Ben and immediately broke down myself. I felt the threat of all I’d said the night before to be taken as nothing less than a simple platitude. And I hate that. I hate platitudes. My cover was blown. Everything was not going to be ok. I can’t make that happen. I don’t have a very safe space to offer my son. But somehow, he gets through another day of riding through this life with death sitting shotgun.

This is why Ben will rule the free world when he’s old enough. IF he gets the chance to become an adult. All these other little whiny crybabies who feel victimized just don’t understand. I’m mainly pointing at America’s young adults who get upset and need counseling because they saw something inane. Here’s a good example: https://www.washingtonpost.com/news/grade-point/wp/2016/03/24/someone-wrote-trump-2016-on-emorys-campus-in-chalk-some-students-said-they-no-longer-feel-safe/

And statistically speaking, more than a few of these people feeling unsafe about seeing “TRUMP” written in chalk on the ground will get cancer in their lifetime. How on earth will they ever deal with that? There’s no safe space that will protect you from “life.” So the best thing to do is simply live it. Adversity happens. Sugar coating and safe spaces might give temporary respite, but it’s maddening to see just how weak we’re becoming as humans. Look. I am (as one of my conservative friends calls me) a “pinko commie.” I love my fellow humans and am all about feeling good and loving my neighbors and spreading love and light wherever I go. I’ve experienced enough tragedies in my time that I really believe my calling to be a healer of some sort. I believe in “wellness.” I know life hurts. But I also know life to be beautiful. And seeing “Trump” written in chalk on the ground in a public place and feeling victimized over it? My advice? Wait for the rain to wash it away. This is not life altering. It doesn’t even come close to making the list.

– There is a “list,” by the way. Learn more at: http://www.healthcentral.com/anxiety/c/157571/115211/life-predictors/

Thankfully, I have a master to learn from. Benjamin understands that life is not fair and something along the way will make us feel unsafe or unloved. Crying and throwing tantrums about it will solve nothing. I’m proud of my young man for the beautiful human he is. Love and compassion goes a long way.

And while love and compassion might not be physical in its existence, that’s his safe space. And mine, too.

Going for the Win

I know I’ve shut down a bit lately. Getting the news that Ben’s disease has progressed despite being on chemo really threw me over the edge. This has never happened before. Therapy has always made him better. Yes, he relapses a lot, but therapy has always helped. And now that it isn’t, well, that’s simply terrifying.

The scanning process and receiving the results is a major life stressor. The more I’ve thought about it over the years, the more I liken it to a championship playoff. We’re going in for the game of our lives. Someone will win, someone will lose. And I keep getting those damn shirts printed stating that we have emerged the victor only to pack those shirts away because they end up being a painful reminder of all the losses.

I’ve always wondered what happens to the shirts declaring a victory for the losing team. Right now, my environment is filled with orange and blue shirts touting the exceptional season the Broncos just had. Every-freaking-thing around Denver is swathed in Orange and Blue because we’re WINNERS! YAY! But what about the Panthers? You know they had shirts made declaring them the victors of Super Bowl 50, but since they didn’t win, where do the shirts go? My good friend and world traveler, Melissa, tells me that she’s personally seen losing team’s swag adorning our fellow humans in third world countries, where things like football championships must seem ridiculous in the face of something like, say, starvation. But who cares what the shirt says when it’s protecting you from the elements? I’m sure they don’t care one bit, and, in fact, are grateful to the losing team for providing them with a basic need.

But at what point do you retire? We can’t all be like Peyton Manning and retire after a huge career win. Some of us – most of us – have to make a graceful exit when things aren’t at an all-time high. And how offensive it was – to me – to have Ben’s team offer an option of stopping treatment. Now, I’ve been working on making peace with this shit-storm my son’s been handling for 12 long years. Some days, I have a grip. Many days, I do not. I don’t understand the WHY of my son having to endure and not willing to accept other’s belief that Ben has cancer because there’s evil in the world. Now, I’m not willing to engage in a religious debate, but this is nonsense to me. I can’t do a damn thing about the WHY Ben has cancer. My job is to support him through it. And I am. I wouldn’t change that for the world. If I had to choose between Ben and his battles and a kid who leads a seemingly charmed life, I’d choose Ben all over again. He has made me a better person. He has taught me about unconditional love. And he’s helped me to understand that there is no room in life for hate. Anger? Sure. But hate? No. Except clowns. They’re bad. And ticks. Ick.

So, as we’re sitting in the room waiting for results, I keep my thoughts and feelings on lock-down mode until Ben can process for himself. His Pavlovian instinct to look at me when we get bad news has led me to this decision to keep it together for as long as I can. Ben is in charge of what comes next. I will always offer my input along with pros and cons, but since I’m not physically undergoing these challenges, it’s not up to me. I held my breath when the doctor offered the option of stopping treatment… and of course that’s a valid option, I just don’t like it. And when Ben thoughtfully processed that option and chose to discard it, my silent sigh of relief and flow of adrenaline distracted me from bursting into tears. Reprieve. For now.

But continuing to fight has a whole extra set of challenges. We’re asking his war ravaged body to endure more. To fight harder when he’s already fought so hard. To recover when his body is simply trying to exist… too exhausted from the battle to overcome. How do you ask for more?

Because I believe he WILL overcome. He wants it so badly and I will support him through it all because I take my job as his personal cheerleader very seriously. He still (as he says) has “stuff to do” in this lifetime. He’s becoming such a neat young man right before my eyes. I couldn’t be more proud of his strength and determination and his ability to love and accept. Despite the circumstances. Despite freaking cancer.

And while the shirts touting a recent victory will go unworn, I believe in his comeback. This beautiful child of mine has my unending support. No matter the outcome.

But we’re going for the win.

 

Kirkersville, Ohio – the place where I grew up – is a teeny tiny village about 25 miles east of Columbus. The population of this village nestled along the South Fork of the Licking River is approximately 500. I didn’t even know I grew up along the South Fork of the Licking River, (which I found in a Google search,) it was just “the creek” to me. All I knew was that we had one stop light, two bars, three churches, one bank that kept getting robbed, a carry-out where I purchased my hordes of Swedish fish, the Kirk Kone (my first place of employment) and National Trails Raceway in the next town over. I think the raceway was the biggest reason anyone ever came to our neck of the woods, and I learned at a very young age how to deflect the flirtation of unsavory race fans. Not all race fans are unsavory, mind you, but the ones who flirted with me were. Here’s a sample of what that might have looked like:

Scene: Small Town, USA, hot summer day. Kids riding on bicycles to the corner to get ice cream only to find the miniature parking lot overrun with motorcycles – a pit-stop on the way to the local race track. Several large men clad head-to-toe in leather (except their arms, which were bare – perhaps in an attempt to even out their farmer’s tan?) waiting in line at the window to get ice cream from a small, red-headed, flat-chested, girl.

Unsavory Race Fan (URF): “Hey cutie. What time do you get off work?”

Underage Sarah (Me): “Um, I’m only 13.”

URF (with furrowed brow and slightly blank stare) “Didn’t ask how old you was, I asked what time you get off work.”

Me: “Never. Here’s your cone,” which I purposefully made to resemble the leaning tower of Pisa.

Even at 13 I was a cynical little shit.

Kirkersville also had one funeral home, one of the scariest nursing homes I’ve ever encountered (I have a slight case of gerontophobia,) and an elementary school. I lived right next door to the school. Sneaking over the fence on school days instead of walking all the way over to the gate was my preferred method of getting to and from school, but I usually got caught in the act. Probably why I’m not a big trouble maker to this very day. Well, except for rearranging other people’s lawn ornaments. I love doing that. I was particularly fond of making it look like they were all looking in a window of whatever homeowner I was harassing at the time. Sneak in, rearrange, and sneak out. I was a pro.

But I digress (again.) The whole reason I bring up my beloved Kirkersville is because I got a phone call from the former Principal of Kirkersville’s elementary school , Mr. Tom Lilly, two days ago. Apparently, I never returned that book I borrowed from the library: “The Night Dad Went to Jail.” It has come in handy over the years, but I didn’t immediately confess to still having it.

Just kidding. He called to tell me this:

“I’m proud of you.”

A man who knew me over 40 years ago as a wee lass took a moment out of his day to call me. How he remembers me is beyond my thought process. I was quiet. I mean, wallflower quiet. The only time I stopped by the office was to see the nurse (I was also a hypochondriac) or to get pencils from the vending machine. It was one of my favorite pastimes because all the pencils in the machine had quotes from the Revolutionary War. I tried to collect them all but kept getting Patrick Henry’s famous quote: “Give me Liberty, or give me Death.” Regardless, Mr. Lilly was always there, always smiling, always kind. I’m proud to say that I never received a reprimand directly from him. This was back in the day when corporal punishment was still allowed. I can understand remembering the “troublemakers,” but not a kid like me. It just tells me that he was a very kind man heavily invested in every single one of his pupils.

I adored him.

During those elementary years, I didn’t have much contact with my biological father. He left when I was four. I went to his house on some weekends, but he wasn’t really around when I visited. Honestly, he has never been my “dad,” except for the procreating part. The whole “father” concept was foreign to me. I know divorce is not out of the ordinary today, but 40 years ago, not many families were like mine. I was certainly one of a very small club. But Mr. Lilly was my school dad, and that’s about as close to anything I had for a while. And he always smiled. The kind of smile that warms the eyes and says “I’m here.” Genuine. That’s the word I’m searching for. Mr. Lilly was genuine. And still is.

So, for him to call to tell me that he’s praying for us, thinking of us, and so very proud of us, well, it made me cry. Not like the getting paddled kind of cry, but tears of heartfelt happiness. Hearing that from Mr. Lilly was a great source of strength. I felt fortified. Ready to fight some more. Confident that I’m making good choices when it comes to my children.

Sometimes we all need a little encouragement. I don’t care who you are. It feels good to hear that someone thinks you’re doing a good job. And for this man who patted my head as a lonely, quiet schoolgirl to extend the same hand to pat the same head all these years later, well, that’s pretty special.

Thank you, Mr. Lilly, for continuing to be here for me all these years later. I just can’t tell you what it means to me. Much love to you. <3

And I hope I never rearranged your lawn ornaments.

 

 

 

 

Love and Loss

Gah. Where to start? All the celebrity death? Losing important members of my musical family – the musicians who babysat me during my formative years when I felt super weird in a ’round-hole-square-peg’ way. It turns out that I was not weird at all from the casual observer’s viewpoint, but the insecurities of my childhood led me to these musicians who were making the most of their weirdness and I wanted to “fit in” with that. Dancing around in my Days-of-the-Week underwear, which I never wore on the correct day – Tuesday could be worn on Friday without the Universe falling apart – to “TVC-15” by Bowie and knowing every lyric to “Queen Bitch” at an impressionable age. Wearing my mom’s wigs while belting out “All the Young Dudes” performed by Mott the Hoople (who recently lost their drummer, Dale Griffin) and was famous – mostly – for covering a David Bowie song. And Glenn Frey, who I didn’t love as a solo artist, but adored as an Eagle, and even had the privilege of having him and Joe Walsh sing Happy Birthday (to ME!) on my 24th birthday (my college BFF, Paula, can verify this claim.) So, I’m sad about those losses for sure, but understand that they will live on through my MP3 player, CD’s, vinyl, cassettes and 8-tracks. Yes, I still have some 8-tracks.

Since my last post so much has happened. I broke up with a minor family member after confronting him on some bullshit he said about me at a minor family gathering where I was not present. I have a LOT of steps and halves and related-by-marriage nonsense since my biological father has made it his mission in life to marry multiple women with a shit-load of kids. I liked this particular kid, no, I loved him. He was my favorite out of the whole lot. But he went on to explain that everyone was sick of hearing about my “cancer-kid” and that I should stop playing that card. After all, he had a co-worker who died from cancer so he knows EXACTLY what I’m going through.

Let that sink in for a minute.

Yeah. It hurt. A lot. I know people are sick of our situation, but none of you more than Ben. Trust me. I’m sure he’d much rather be a well child who hasn’t spent the last 12 years fighting a horrendous cancer, but this is the hand we’ve been dealt. While my heart hurt over what this relative said, I don’t feel a bit bad about permanently severing that relationship. He handed me the scissors. I made the cut. I have to take it for what it is and move forward. But it still hurt.

Speaking of always talking about cancer, Ben’s last scans showed no change. It’s good that it hasn’t grown or spread, but it’s bad that the tumors didn’t dissipate with chemo. We’ve been talking with Palliative Care to discuss horrible things like bucket lists and quality of life and making the most of every-single-minute. But trying to get Ben to tell us what he wants – what would make his life better – he has minimal thoughts on that. Or, I guess, he’s not sharing with us what he wants except that he wants to see a volcano. When pressed, he simply states, “I just want to spend time with you and dad and Midge,” (his nickname for Maddy.)

I have to applaud him. If I were asked about my bucket list, I’d be quick to rattle off things like seeing the Northern Lights from a glass igloo in Finland. Getting some work done on my turkey neck. Seeing a game in every NHL arena. Taking a craft beer tour of the US. Visiting the five states that I haven’t been to (AK, ND, ME, VT, NH.) Taking a yoga retreat in an exotic destination. Getting published. And then spending my waning days in an adjustable bed bingeing on Netflix and potato chips, while periodically peering into a mirror to admire my youthful neck, surrounded by the people I love.

But Ben isn’t a taker. He doesn’t want people to feel compelled to make his life better. Over the holidays, we were invited to a party for “There With Care,” a wonderful charity that has given us so much since we’ve lived in Denver. The party-goers were asked to bring a gift to donate to the myriad of affected families in Colorado. When we walked in to the event, there were literally tables overflowing with amazing gifts. Ben and Mad were told to choose any present they desired. I mean, there were brand new iPods! The 64-gig ones! So, when Ben chose a $25 gift card to Target and Madeline followed suit, my heart exploded. I marveled over the fact that I – a self-absorbed asshole who probably would have nicked the 64-gig iPod – have raised two of the most non-asshole-y kids in the Universe.  And for one of them to have to worry about getting an extension on life while the other is worried about losing her only sibling, well, they deserve to be a little bit of an asshole. Yet, they aren’t. And I’m proud of that.

I can’t imagine what goes through Ben’s quiet mind. We just passed the two-year anniversary of when his co-warrior, Justin, lost his battle. We’re currently waiting for any crumb of information about another Colorado-based Neuroblastoma warrior, Delaney, who is quickly nearing the end of her battle. I just can’t imagine this loss and pain and how it affects my son. I know how it affects me. I’m terrified. It breaks my heart that all I can do is pat Ben’s hand or give him a hug as the devastation continues to roll in, relentless as high tide. Platitudes aren’t life preservers. I know that for a fact.

But love is. The loss keeps coming but the love keeps us afloat. And we are so thankful to every single soul who takes a minute to think about us, or goes to the amazing extreme – like my sister – who gave the entirety of her family’s Christmas fund to us so we can take our Ben to see a volcano when we get a break in treatment. Beautiful gestures like that make it easier to let go of the hangers-on trying to make us feel icky. We feel enough of that without your help, thank-you-very-much. And from here on out, focusing on the love is an integral part of my mission.

So, I highly recommend you strip down to your underwear and dance to your favorite music, whether it be classic rock, country, or, heck, even Slim Whitman if that’s what you’re into. Anything will do. Invite the love in and let it soothe your soul. We all deserve that from time to time.

And if you get in trouble at work or arrested at the grocery store for public indecency, tell them it’s for Ben. If that doesn’t work, hopefully you read my jail-experience posts a couple of years ago. There are some helpful tips in there.

Sending so much love to all of you. So thankful for all that’s sent to us in return. <3

 

 

 

 

Happy f*cking holidays

*Directions* – please put on your humor glasses before reading. Some effects are in 3-D.

The past month of my life has sucked old man balls. No offense to old men and their dangly bits. Well, maybe just a little. Since men traditionally age so much better than women maybe I’m just angry that my face is showing its age so much more this holiday season – and men can always (and usually do) cover their testes with clothing. I needed to make a crack on them to make myself feel a tiny bit better.

Just follow along, friends. It’s for my mental health.

I won’t go through everything that’s bringing me down this holiday season, because, Hey. I care about you. I want you to have a happy season. (You’re welcome.) But the highlights include:

*one totaled Subaru named Suzanne – on Thanksgiving, no less. Oh, and this is after a long day of chemo for Ben, because, why not make my most despised holiday even shittier?

*one dead hamster named Liz Lemon, which added a whole lot of insult to the bullying injury my daughter was already facing. Sixth graders, man. Why adolescence has to happen at all will always remain a mystery to me. Add in a dead hamster and watch the emotional eruption cover your holiday season like hot ash covered Pompeii. They’ll unearth me someday, curled in a fetal position, sucking my thumb and holding a perfectly preserved fruitcake.

*three panic attacks that ended with me passing out, one in the comfort of my own kitchen, another outside of the house after an Avalanche game (we won… I’ll chalk the passing out to the AVS actually creaming an opponent this season) and the other in a very crowded IKEA. Check YouTube for “Middle-aged woman wearing yoga pants passes out while browsing ANGSSKARA duvet covers.” I’m sure it’s trending as I type. Everyone just assumed I was diabetic. Never have I had so many people trying to throw orange juice at me at once. It was like a citrus stoning. It ended without much excitement, I finished shopping and Matt is putting together the KELLAX shelving as I lay here recovering.

I’m sure I could compile all the nonsense that’s occurred this month and come up with my own twisted version of “The Twelve Days of Christmas.” If only I had the energy to write it….

The holiday season has always left a lot to be desired. I’m not sure if it was the drama of shuffling between broken homes or all the food that touches each other or watching step-siblings get awesome presents while your biological father tells you yours had been stolen out of his car, so there was nothing for you that year (I wish I were making that up for dramatic purposes. Don’t tell him I know the truth… he thinks I still believe his bullshit.) But it’s always left me with feelings of inadequacy, no matter what I’ve tried to do to release it. And, of course, once I had my own children I felt compelled to make it the Best. F*cking. Event. Ever. Overcompensate much? Sure. I’m guilty.

But this year will be different. It’s about the memories instead of the stuff. I don’t subscribe to any religion, so I guess some would say that I shouldn’t celebrate at all. Not that I don’t believe in Jesus, or Hanukkah’s celebration of the rededication of the Holy Temple, or the first fruits of Kwanzaa – I do. I believe in it all. What it comes down to, no matter what you believe, is this time of year means gifts. And family, even if they’re horrible. And friends, if you have any. And, whatever tradition you decide to bring to the table. So, in addition to buying one thing for each child that they really and truly want, the rest is about having fun. Going on an adventure. Experiencing something new. We’re going to roll around in giant hamster balls (as long as it’s not mentally taxing for Madeline to be reminded of hamsters) on the snow and swim in some hot springs and eat Chinese on Christmas Day and enjoy each others’ company. Let’s see THAT get stolen from the car.

And whenever something horrible happens, I do try to balance it with the good: I got a newish car. She’s beautiful. And my daughter went back to school last week, bravely making the decision to not let other turd-balls screw with her mental health. While she still mourns Liz, she’s doing her best to find the joy of the season. My son finished his second round of chemo and is on the upswing to physically getting stronger. Scans will occur the week after Festivus, which takes place on 12/23 for those who are interested, and hopefully we’ll learn that he shows no evidence of disease.

As for those pesky panic attacks, I’m going to embrace them. There’s not a freaking thing I can do about them because my stress level never dips below a full tank. And it’s a good way to get random people to bring me water. I did, however, join a depression club through Children’s Hospital where the 10th punch gets me a month’s supply of Prozac gratis. So I got that going for me.

Actually, I have a lot going for me. I just like to complain. And moreover, I like sharing my complaints with you. Because you love me.

You all truly love me. What would you do without my wicked sense of humor and discussion of old man balls? I bring levity to your life. Admit it.

And that’s a freaking Christmas/Hanukkah/Kwanzaa/Festivus miracle. Shit. I’m pretty sure an angel just got their wings.

Love to ALL of you this glorious, f*cking holiday season.