sorting through thoughts

If I stay quiet enough, I can hear the clanging of the mini rectangle of plastic against metal –  a mini Nintendo game you never got a chance to play. It was hanging from your desk lamp and positioned right by your bed for when you woke up and saw that it had finally arrived for you. We knew you’d want to play it ASAP.

Please, Ben. Wake up. It’s here for you.

But the sleeping was outweighing the waking. Unfortunately, the sleeping wasn’t very restful. Apparently, that’s common near the end of one’s life, restlessness. You rocked yourself a lot of the time as a way to self-soothe… a way to get through. With each gentle rock, the piece of plastic clanged against the metal lamp shade. The sound almost became hypnotic. And I shouldn’t say clang. It was more of a chime. A soft noise. Chime… chime… chime… in perfect time as if it was purposefully matching the beat of a metronome. It probably isn’t what most people would consider communication, but my son was making that noise by himself. It was his contribution to our vigil that we were holding for him.

It broke my heart how you responded to nurse Lauren’s visit. It was probably the one that had you the most concerned; why was she at our house? Why was everyone whispering? You said out loud at one point, “It must be bad if all of you are in my room.” Then there was a sweet hallucination (what an oxymoron!) when Lauren was getting ready to leave… you automatically lifted the bottom of your shirt so Lauren could de-access you from your IV. Oh God. My heart screamed. This had been your normal for so long, it was an automatic response. You were drifting between the world of being here and leaving. My logic allowed me to say the words out loud, “Ben, you have my permission to let go.” whereas my heart was screaming “NOOOO” louder than an air horn.

That’s how it feels most days, like every single pore of my skin has its own air horn behind it and if I accidentally brush up against anything, they go off. I think most of them are just waiting to go off all at once despite my desired efforts to seem “normal.” Today, I had a close call at Michael’s. A woman was buying a wooden clipper ship, one of those items you paint yourself – and I could immediately hear The Legend of Zelda Wind Waker soundtrack running through my mind with the ship floating out to sea, which generally brings me so much comfort because of how special it was to you. But I was outside of my safety zone. In public. The air horns can’t go off here. But the threat was at a very high level: Red or Orange or Five… whatever is close to “we’ve got a middle-aged woman in aisle five doing some weird shit that needs to stop STAT.”

So I made it home before some of those air horns went off. And now I’m sitting here, hurting, wanting, wishing, waiting. And, yes. Sometimes I go in your room and try to replicate that gentle sound you left me with.

But my rhythm is way off.

Processing…

I was laying next to Ben’s body, gently embracing him, when Maddy rushed in to room 115 of the hospice facility, absolutely shattered to find that her brother had died and that she hadn’t been there. Her face twisted in pain with tears flowing and words choking out “I’m sorry! I’m sorry! I’m sorry I wasn’t here!” I wanted to take her in my arms but I was afraid to let go of what I currently had my arms around, because when that happened, it was going to be permanent.

I know I can’t make her understand now, but watching Ben die was incredibly painful. Those last few gasps. The raspiness of the congestion in his throat from those damn mouth sores. The oozing blood on his pillow. Watching his beautiful brown eyes fix into a stare that I cannot help but compare to a factory reset. His eyes rolled, then stopped right in the middle as the last breath left him. Like he had been reset. He was no longer breathing. No longer moving. No longer living.

And there was not a freaking thing I could do about it.

But I was glad that she was out of the room when Ben left. Matt was there to hold her close as her sobs grew louder.  I continued to lay next to my dead son, gently touching his quickly cooling skin and counting the freckles that I had counted a bazillion times before, trying to commit them to memory, because I knew at some point, they would take him away.

I don’t know how long we were with him, but they gave us all the time we wanted. We kissed him, held his hands, smoothed his hair. Knowing this was going to happen. In denial that this just happened. How are we going to carry on now that this has happened? 

We finally told the nurses we were as ready as we were ever going to be to leave our Ben. They asked us to step out of the room so they could prepare Ben’s body for the funeral home to come collect him. We waited in the lobby by the nurses station. I knew they were changing him into a Nintendo shirt and some comfortable pants that Matt had picked out, but the only other thing I can remember is that my body was trembling. The adrenaline was making it too difficult to stand still but too challenging to move with any grace. People said things. I don’t remember. My eyes were glued to the door of 115, waiting for the stretcher to come out with my son’s body.

When the door finally opened, it did simply look like he was sleeping, but with each wispy fluff of the newly growing hair smoothed down like a little old man getting ready for a date. I couldn’t step closer to the stretcher. None of us did. We just looked at him from where we were standing. Like he was asleep and we didn’t want to disturb him. They were just taking him off for a little rest. At least, that’s how my coping mechanisms allowed me to process this.

The woman who came from the funeral home to collect Ben had him covered with probably what was standard funeral fare, but it looked out of place on Ben. It was a very heavy formal looking blanket, but it was easier to focus on that out-of-place blanket than it was to make my mind accept that my son’s body was beneath it. It was all so out of place. She started to gently wrap Ben’s face up in the sheet while we were all gazing at him and the hospice nurses all gave a collective head shake of “NO!” She quickly removed the sheet with a slight look of embarrassment that she had done something wrong.

Something touched my heart though, that this must be her first collection of a body, at least with family watching. And that soothed me somehow. This was my first time going through this, too. I’m not quite sure how to do this correctly either.

I think learning how to do this is going to be a life-long process.

 

 

 

New York City

I started writing this last month on 9/11 but lost my energy… sorry if it feels disjointed.

Seventeen years ago today, I was relishing the tail-end of my maternity leave when terrorists attacked America. I was laying in bed gazing adoringly at my three-month-old son when a phone call from Matt encouraged me to turn on the tv… he said a plane had just hit a building in New York City.

I scooped up Ben and walked into the living room only to tune in just as United Flight 175 crashed into the South Tower of the World Trade Center. I had missed the few moments where the Nation was discussing whether or not this was an accident. This second crash made it clear that this was a deliberate act of aggression. Reports of destruction and death and hate and heartbreak… it was surreal.

In the weeks following 9/11, I felt a true camaraderie with my Fellow Americans. I nodded at strangers with concern in my eyes, as if to say, “I know, Pal. This is some scary shit.” After about a month of feeling extra patriotic, I went back to my old patterns: An older woman at Target approached me as I was taking Ben out of his car seat and transferring him to my hip. She said “Oh, what a beautiful baby,” and then started in about his red hair, which oddly led her to start talking about the horrific state of the world we lived in. As she reached out to touch my precious Ben (which caused every cell in my body to seize – just don’t touch my stuff – especially my humans – without asking) she said, “You sure did pick a crappy time to bring a kid into the world.” My response was to furrow my brow with a look of “piss off, woman” and pivot away from her creepy fingers to deny her any contact with my son. I have to admit, though, my paranoia does chide me at times. Is 9/11 my fault? Did Ben get cancer because I chose to bring him into the world during a crappy time? Of course, I logically know that neither of these things are true, I just have an overly active imagination and a fair amount of self-deprecating humor.

In 2010, we started traveling monthly to NYC for Ben’s therapy. I will never forget stepping off the plane at LaGuardia and having no flipping idea how anything worked. I’m from Kirkersville, Ohio, where the population is somewhere around 500. There’s definitely more chickens than humans. And from what I could count, about 500 people were also waiting for a taxi with me at that very same moment. And they all kind of smelled like chickens. It was overwhelming to say the least. Ben nestled against my coat and said, “I don’t think I like it here.” I had to agree with him.

Over the years, we travelled to NYC often and for a variety of therapies. Memorial Sloan Kettering really did have the best options for relapsed Neuroblastoma then, and while a lot of that therapy was painful and left Ben unable to walk or nauseous or whatever side effect he experienced from trying to save his life… we tried hard to make the best of it. However, I’m the kind of kid that likes to “go it alone,” I won’t ask for help in the traditional sense. Our routine consisted of heading into the city, checking into the Ronald, and then pretty much avoid other people during our stay. Introverts. What can you do? Any navigation of the city was done completely on our own, with the exception of a side trip to the Jersey Shore with the Ronald McDonald House and a gala or two.

So I didn’t know about this wonderful woman named Barbara until really late in our NYC travels. Barbara runs a non-profit called Candlelighters NYC but I really had no use for groups and other people to commiserate with… I’m a DIY kind of girl when it comes to dealing with emotional stuff. Regardless, I kept hearing about Barbara and how she knew everyone and gave the kids amazing experiences.

So, years into our trips to New York City, I finally meet Barbara. She sent me and Ben to a hockey game where we met New York Islander Josh Bailey. The day after this meeting, we learned that Ben had relapsed. Barbara came to the rescue with stuff for the unexpected hospital stay and unending support. This trip, though, ended up being one of the more stressful trips we had to Sloan Kettering, as it was longer than we anticipated and we decided after this relapse to no longer pursue treatment in New York City.

The hospital here in Denver did not make any illusions about Ben’s prognosis, and even though they couldn’t predict when his death would happen, they were clear that we needed to get busy living. I think we all shut down about that. March was absolutely horrible but then we got a bit of a reprieve with that new chemo that was only supposed to help keep him comfortable. He suddenly had energy. He was playing with his online friends again. We were making our way through the cinematic Marvel Universe together. It was a cleansing breath for all of us.

But I heard what Denver was saying, that this was not going to get better. In fact, Dr. Macy said “I don’t know if it will be this week or next week, but it will be soon.”

Soon.

Soon.

Soon.

With a little more urgency, I asked however you ask a 16-year-old boy what he wants to do before his life ends. Ben surprisingly said he wanted to go to NYC so he could meet his online buddy, Branden. I called Barbara to ask if she knew of any lodging options in the city and before I knew it, Barbara and her beautiful friend, Ann, had set up flights, transportation, gorgeous lodging, stocked refrigerator, an amazing boat ride on FDNY 343 and a Broadway miracle of not only fantastic seats to Hamilton, but also the chance to go backstage and meet the cast. Ben was on morphine for this experience… when we first sat down so incredibly close to the front he said, “this dying gig isn’t so bad.” And then he immediately said he was sorry if that hurt my feelings.

Seriously. How will I live without this young man and his sharp wit/amazing empathy?

He was in so much pain though. His birthday, when we took the boat ride, was probably the last day he willingly stood for any length of time on his own. He interacted with the firemen and enjoyed driving the boat. He took pictures. It was clear that he was tired but I never expected that he would be leaving me in just over a week.

We did get him to New Jersey to meet Branden. The look on Ben’s face masked the obvious pain as he was meeting the person most important to him: A friend who had been there through it all and was BRAVE enough to stay even though he was going to lose this friend. For that, I am amazed.

I was so worried that my son didn’t have any true friends. But here he had built this community of wonderful people who didn’t see him as anything but a gamer, one who changed their lives for the better (as they’ve said through gorgeous notes over the past couple of months.) I am so proud of my son. He really did change the world.

I’m just having a terrible time trying to reconcile the pain.

My Darling Ben,

We couldn’t get you comfortable at home. You didn’t have many lucid moments past Sunday morning when the hospice nurse increased your morphine for the fourth day in a row. You started sleeping more.

But what we were doing at home wasn’t enough. It all moved so fast. Your sweet face was so swollen from that horrible bastard of a disease. Relentless fucker. Hadn’t it done enough? No. It was going to make the end miserable, too, by finally showing what it was fully capable of.

A week prior you were meeting your best friend in New Jersey and today you can’t speak to me. And despite a constant increase in pain meds, you’re still experiencing discomfort. We get you through Sunday. We stumble hard through Sunday night. Monday morning we made the decision to move you to the hospice facility.

It was the right thing to do.

Your dad carried you down the stairs and gently placed you on the stretcher. We covered you up to your chin as the EMT’s buckled you in. I went outside with you to the ambulance. The sun was incredibly bright, and your body responded with the appropriate reflex of a wince. A boy walked by on his way to his buddy’s house, curious as to what was happening just a few houses down from his. We locked eyes for a moment and I thought to myself that he probably didn’t even know another boy – my boy – lived in this neighborhood, too. I felt weird about that for a minute and then climbed into the back of the ambulance.

“Talk to him, honey. He can hear you,” the EMT encouraged me as she scribbled on a clipboard. My hands placed on either side of your face, my lips touching your forehead as I whispered and wondered… “can you? Can you hear me?” So I told you a story of how I was pretty sure you would get the job at Rainbow Bridge, greeting all the pets as they arrived. I imagined you responding to me with “You mean I have to get a job in the afterlife? I can’t just “chill out” for a while? And I’ll be pissed if this place doesn’t have WiFi.”

We were at the hospice facility for less than 12 hours. And even though I know what “unresponsive” and “hospice facility” and all those other terrible words mean, I still thought we would somehow come home with you. I know that sounds unreasonable. And, as it turned out, it was totally unreasonable. We left there around midnight. Without you.

I watched you die. In those final moments my eyes were glued to your neck, following your weakening pulse as it slowed… stalled… jumped…. You gasped hard. I think I screamed. I understood immediately and with great clarity the reasoning behind having a DNR because as I was witnessing this, all I could hear was my soul screaming “SOMEBODY PLEASE DO SOMETHING! PLEASE HELP HIM!” I pushed the nurse’s button and they rushed in to be by our side as you died, their hands on my shoulders, knowing what was coming next.

One more labored, gritty breath and then you were gone. Maddy was, thankfully, out of the room when you died. I kinda think you planned it that way… you knew that she needed mercy on this. I know she thinks she failed you because she wasn’t there. If you could do something to alleviate her grief over that, I’d appreciate it.

Also, while we’re asking for favors, know I’m listening for you at every turn and missing you desperately. Your once quiet presence has turned into an excruciatingly loud void. How can you be everywhere and, yet, nowhere? It is absolutely confounding.

This sucks, Ben. I miss you, my darling, and I love you so very much.

Love,

Mom

 

 

 

 

 

I’ve been crouched down on my knees for so long that I can’t remember if I was looking for something or praying. Maybe it was a little of both. But my knees are bleeding from being down here so long, and, since I am days away from turning 50, I’m willing to accept the fact that it’s getting more difficult to get back up again.

Dammit. Please come out. Please allow me to express all of these horribly horrific experiences that are holding my brain hostage. I’m tired of having them in my head… a screenplay for the tragedy that is relentlessly playing out, whipping into a frenzy that I pray will stop but am afraid will stop. I can’t even begin to edit all the footage so it will make any sense and the maudlin soundtrack refuses to modulate to a different key, which I just know would melodically pull us out of this quagmire of defeat.

Ben is in decline. I cannot make my mind conjure up an image other than me standing on a parapet waving a white flag, conceding defeat. Only it’s not my flag to raise. So I rewind the footage in order to erase that it looks like I’m trying to tell him what to do, even though I don’t want him to do that. I’m just tired of seeing him hurt. And I’m sure he’s tired of hurting. He’s got to be so tired.

So tired.

The kicking is getting slower and the urgency of survival is giving in to the promise of rest. Each push of his patient-controlled morphine allows him to exist in this state of in-between… giving us time to love and grieve and all the terrifyingly beautiful things most people would probably rather avoid.

It’s just shocking how much it hurts.

 

 

 

 

breathtaking

During the summer of 2000 I found myself on the island of Grand Cayman taking a two-week certification course for scuba diving. I was 30 years old and “highly” stressed out. Oh, my life was full of woe back then, for I had just completed my MBA at the University of Denver and had to leave my beloved Summit County, Colorado (where it is extremely difficult to earn a salary strong enough to pay off an MBA) for my former home of Central Ohio. Yes, I moved back home. With my parents. And as I stated above, I was 30.

To my credit, however, I picked up the adulting gig pretty quickly. Within a year I was an HR manager making a respectable salary, got a spouse, a baby, a reasonably priced starter home in the suburbs… all within a year. It certainly wasn’t the vision I had for myself when I was in Grand Cayman “recovering” from my life as a student in a ski town, but I was making it work. And despite never wanting to be anywhere near infants/toddlers/anything-that’s-sticky, I found motherhood to be quite compelling. I was completely captivated by these little nuggets of joy.

So what, Sarah? We’ve all heard this story before. We know you’re sad because you never thought you could love someone like you love your children and how cruel this life has been because you have to sit and watch them hurt knowing there’s not a thing you can do for either one of them. We know.

I know. I’m just making conversation because I think I’ve forgotten how to do it. I see people in public and words form in my brain but my mouth can’t process it so I say a word like “moop” and realize how ridiculous it sounds and burst into tears. At Safeway. Or the bank. Or in the kitchen. Anywhere, really. I never know when it’s going to come.

It feels like we were introduced to this hospice team a million years ago. It’s amazing how quickly they become a part of the family, like they’ve been around forever and know every intimate detail of your dirty life. But they aren’t there to expose it. They aren’t involved because they’re nosy. They aren’t in it for the juicy gossip. They’re in it because it’s the end of someone’s life and someone has to be there to do it with grace. That’s not me at this point. I’m not doing this with grace. I can’t fucking stand this. But I want to soak in every minute because that’s all there is.

That’s all there is.

And why I was remembering my unpaid sabbatical in Grand Cayman was because it taught me something vital: how to breathe. And, God, isn’t that trite… just breathe, dear Sarah, just breathe. But dammit if it doesn’t work. Breathing works. It keeps us alive. And for the times that our body is too overwhelmed to do it on its own, you die for a second and then remember why you’re here… to keep breathing another day. At least until you’re out of breath.

I learned underwater that when you find the perfect balance, as you inhale, you rise. When you exhale, you sink. Of course, this life is so out of balance there’s a lot of kicking and flailing about, but bringing your mind back to the breath will eventually bring you through. Move forward through the water. Inhale; rise. Exhale; sink. A pattern with momentum and that much control will have you flitting through life like a mermaid. If only I could find a pattern.

I’m quietly watching as my son’s breath runs out. And that is excruciating. Some days I don’t want to. Then I remember that this is my flipping journey and I’m not going to miss a moment of it. If I’m supposed to sit by my son’s side as he slips off this mortal coil, then I’m in 1000%. I will breathe through it. Just like I breathed through his birth, I will breathe through piece of the journey, too.

When the nurse on-call tells you it’s time to open the “comfort kit” you’ve stored in the refrigerator for when things take a turn for the worse, just breathe.

When they suggest buying very dark sheets so you won’t be shocked by the amount of blood loss, just breathe.

When he finally asks for a tiny bit of comfort and lays his head on your shoulder just like he did when he was a toddler, just breathe.

End of life is still a part of life, friends. And even though the breathing gets more difficult, we’re still alive.

Keep breathing.

Brain Dump

There’s a tremendous backlog of information taking up space in my brain – so many things I’ve wanted to write about but haven’t – so I’m calling this post “brain dump” and whatever comes out comes out.

2017 has been quite the roller coaster. January knew that our swing was weakest when it came to her curve ball, so here’s what she and her “sisters” (especially the “extra bitchy” sisters named June and October) threw at my son: 1) relapse #5, 2) more radiation/chemo/surgeries, 3) scary progression of disease despite treatment, 4) MORE radiation, 5) No Evidence of Disease!  YAHOO!! 6) two precious months of hearing nothing from cancer, 7) only to find out in October he’s facing relapse #6… and the cycle begins again.

Ben’s on a daily oral chemo. He isn’t losing his hair but he feels like crap pretty much all the time. We haven’t changed how we approach this beast, Ben is still in charge of choosing (or not choosing) the treatment plan. Unfortunately, at this stage of the game, there aren’t many choices. And the options that do exist are terribly unpalatable. Right now this daily chemo regimen is the best option available.

The biggest change we’ve made was pulling Maddy out of school. She’s working with the same home/hospital teacher as Ben, which is awesome because we love her. Anyway, the school year got off to a rocky start for Maddy. An incident occurred that shook her to the core. I will not share details out of respect for my beautifully brave daughter, but it was enough to generate some pretty intense anxiety. And then once we received news that Ben had relapsed again, we realized that sending her to school to dazedly shuffle through the halls wasn’t what she needed. She wanted to be with her brother, so that’s what she’s doing. Her friends have totally rallied around her in support, coming over on the weekends for sleepovers and the usual 13-year-old stuff. Her pals are amazing and I’m greatly indebted to them for bringing any amount of joy to her life.

I keep trying to write about bucket list right here but I’m struggling. So let’s say this: we’ve had some neat experiences over the past couple of months… we road-tripped to Yellowstone, we spent a week in the mountains, we’ve gone zip-lining, and segway-ing and done clue rooms… but I think Ben has decided that a big trip to Hawaii is out. I’m not sure when he shifted away from that, but he started thinking instead about a trip to Ireland. After some consideration, he ditched that idea, too. So, here’s what we’re doing: Ben does not have friends in the traditional sense. He doesn’t have sleepovers. He doesn’t go out with his pals. But he does play online with LOTS of kids his age all over the US. I didn’t realize he had this wonderful network of friends that he’s been playing video games with for years. They have become his closest compadres. Don’t worry, we are vetting each and every online persona to make sure they aren’t 56-year-old pervs still living in their parent’s basement. And then, once they pass the “background check,” we’ll figure out a way to get them all together for a heck of a party. I was completely humbled by his idea of wanting to meet the very people who have had his back all these years.

Dr. Macy reminded us that Ben reaching NED status again is unlikely, which she immediately followed up with “but he continuously surprises us.” My take-away from that is that there is still hope. For whatever reason, this is our life. I don’t understand it. Sometimes I hate it. Many days I’m confident that it’s going to kill me soon. In fact, a moment of me grabbing my left arm and grimacing in pain led Matt to ask if I was having a heart attack. My response was “I really hope so.” I don’t think I meant it, but it sure flowed from me like it was the winning question on Final Jeopardy. Regardless, the pain dissipated and I’m still here to fight another day.

For now, I’m taking my cues from plants living life above the tree line. If you’ve not traveled in the mountains, the “tree line” is defined as an imaginary boundary above which trees will not grow. This line in the Rocky Mountains is somewhere around 11,000 feet. Anything above that has no shelter. Just the blistering sun, threatening storms, avalanche danger, rugged terrain and the wind whipping, sometimes at a hundred miles an hour. It’s difficult to survive above the tree line. But what these beautifully tough, yet delicately fragile plants do is lower their center of gravity and hang the fuck on. They ground themselves. So, that’s what I’m doing, too.

I see you coming, storm. I hear your roar. And I know you’re coming for us, bent on destruction. I’m tired. I’m scared. But I’M STILL HERE! I may not be standing right this second because your adverse weather pattern over the last 14 years has beat us down every damn chance you get. But guess what, bitch?

You haven’t won yet.

 

 

 

 

Checking in…

It looks like I’m becoming a “blog once a quarter” type of person. Sometimes I feel guilty about that because I genuinely do want to keep everyone updated on Ben. But honestly? I’m tired. Plus, Ben and Madeline have both recently told me that I talk about Ben’s illness way too much. I guess I took that to heart and backed off quite a bit. I mean, I want to be an embarrassing mom in a fun way, not the “holy crap, here comes the lady who can’t shut up about her son’s terminal cancer.”

Since joining social media in 2009, I have fallen in love with learning about your lives. I felt comfortable communicating with anyone and everyone because writing was my preferred mode of corresponding. I didn’t have to sort through my social anxiety in order to interact, which was completely refreshing. And when Ben did relapse that summer of 2009, Facebook got me through the long days at the hospital. I could slip into your world for a couple of minutes… virtually celebrate milestones with you, applaud your kiddo for acing a test, enjoy your life as if I were right beside you… it was a form of sweet relief. Thank you for that. Plus, social media allowed me to cultivate a following of amazing supporters from around the world who have nothing but love for my Ben. So, while you might not want to STAY in our world, you could visit whenever you wanted to.

I’ve received a couple of messages lately from people checking in, worried about us. This is certainly not my intention to cause concern, but the truth is we’re kinda in neuroblastoma purgatory. Each doctor’s visit determines whether we get to hang out in NED heaven or if we’re being thrown back into treatment hell. Right now, nothing is going on. We have a lot of downtime. I wish I could say that we’re doing a lot of productive stuff with that time, but we’re not. Matt goes to work. Maddy goes to school. Ben sometimes works with his teacher. I generally get lost in the sub-world of Pinterest, but sometimes I try out self-tanners. And cry. Of course, I try not to do the self-tanning thing and cry in the same day.

I’ve learned that having something to look forward to takes some of the pressure off the landmines otherwise threatening our environment. For instance, Maddy recently turned 13. She wanted to have a murder mystery party so I myopically dove in… oblivious to everything else in my life. I viewed her birthday party as the pinnacle of my parenting… throw her a great party and I’ll win the “Best Mom EVER!!!” award. I really needed that kind of win. And while I’m confident that the party was a success (she gave it an 11 out of a score of 10,) now I’m back in that sea-ravaged boat asking “What now?” What if I get started on a new project and learn during next week’s scans that radiation didn’t do what we’ve hoped? And then that leads me to just sit here paralyzed… occasionally crying and pinning things on Pinterest that I’ll probably never make. I feel that continuing my search for the perfect self-tanner for my fair complexion is the safest activity for now.

I haven’t completely lost hope, but I’m also not turning a blind eye to what simply is. I know that after my last blog post there was concern that I sounded like I was throwing in the towel and conceding defeat to Ben’s opponent. I’ll admit that it is becoming more and more challenging to accept this bullshit that my son continues to bravely face. I try not to let those cracks show when I’m with him but he knows. He knows. The streaks in my self-tanner leaves no room for doubt.

Everything hinges on what this next set of scans report… I am hopeful.

But I am terrified. And the terror part is getting harder to suppress.

 

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.