Author: Sarah Brewer

We were under the weather yesterday. Ben was struggling with a cough, Madeline was sniffling, my throat felt scratchy… so we just stayed in bed a good chunk of the day. I was disappointed because I was hoping to go do something fun… summer is quickly running out. There have been a few fun moments here and there but there have been no vacations, no events – even his birthday was shot. It’s been a cruel summer.

Many folks we come in contact with ask Ben if he’s had a good summer off from school. My brow furrows. The corners of my mouth drop into a frown and I give them a look that begs the question, “Are you freaking kidding me?” Meanwhile, Ben says, “Yeah, sure.” Because he is probably thinking about video games and their rhetorical question doesn’t have the same meaning to him that it does to me. I want Ben to shake with excitement as he recalls all the wonderful things he experienced this summer. I want him to have had so much fun that he simply cannot remember all the fun stuff he did. But since none of that is true… well, none of that is true. His summer was spent throwing up and losing his hair and tethered to a bed unable to go to the bathroom without a big set change. Honestly, potty time is a big production – people backstage moving everything around so he could perform the next act in the play… which is simply a moment to himself so he could use the toilet. NOT what a 12-year-old boy should be doing. Then again, he’s not a typical 12-year-old. He’s Ben. And what he is is wonderful. I wish I could face each day with the grace he exudes. Instead, I am a big freaking crybaby.

“Not fair,” I cry, as I make breakfast that he probably won’t eat. “Not fair,” I cry, as I draw up a needle full of medication that is going to burn as it sinks below the surface of his skin… which I have to administer, by the way. “Not fair,” I cry, as I sign the consent form allowing a surgeon to cut into him, to give him toxic medications, to agree to a new rash of terrible side effects. “Not fair,” I cry, as I ask him to participate in signing paperwork that guarantees he will never produce his own children due to the harshness of the therapy. Oh, okay, he lost this skill back when he went through transplant in 2004, but he doesn’t know that. He doesn’t know that he cannot produce biological children. I know there’s adoption and all that jazz, and if I believe all the statistical evidence regarding long-term survival of pediatric cancer patients, then I fully understand that he will never move out of my basement or have a real job, let alone produce any grandchildren for me. Although, daytime television warns us all that just because your child lives in the basement and is unemployed, it doesn’t mean that he’s not out there fathering children. But my Bean will not be one of those. He simply won’t be able to.

So, I cry, “Not fair.” But life isn’t fair, is it? You’d think I’d have a better handle on that by now.

So, after resting nearly all day, I took Ben and Mad to Outback to celebrate the fact that Ben’s bone marrow is all clear. Ben loves Outback. He ordered a gigantic steak that he barely made a dent in. That’s how Ben rolls 😉 Anyway, as we were leaving, Ben held the door open for an elderly couple. They were all smiles as they admired this polite little man without hair. They weren’t sure what else to say but I could sense they wanted to remark about the obvious. They refrained though. The woman awkwardly continued to make conversation, which manifested in her telling me I have really nice legs. “Oh, they’re so beautiful,” she said. I ate it up, I’m an attention hog when it comes right down to it and I have always felt that I have fat knees. So, I enjoyed her awkward attempt to not talk about Ben’s cancer.

My glee was short lived, however. As we drove away from Outback, I passed what appeared to be an older lady – I’d say mid-to-late 50’s, wearing a visor. It was clearly part of a fast food uniform. I got sad for a minute that this woman was working fast food at her advanced age. Not knowing anything about this woman, I felt bad for her, which is not fair. Maybe she likes working fast food? Maybe there’s a backstory there that I know nothing about. But what I do know is that I worked fast food when I was 16. I hated it so much that it only lasted six months. It’s a thankless job, pays nothing, and the management usually stinks. If they have any issue with you, you end up on lobby detail, which includes cleaning the restrooms. That job is one I’m sure is on the job board in Hell. I imagine Hell has a board full of job postings, right? Bathroom detail must be high on that list. Anyway, as I drove past her I thought to myself “there’s my future. I’m going to be a 61-year-old woman working in a fast food restaurant.” Madeline asked me to restate what I’d just said, which alerted me to the fact that I’d said it out loud. “Oh, nothing, honey,” I reassured her. “I’m just saying that I’m probably going to work at Hooter’s when I’m 61.” To which, my brilliant daughter retorted, “But they’re going to have to rename “Hooter’s” something like “Floppy’s” if old people are going to be working there.”

Pause two beats. Then let the crying with laughter begin. Of course my brilliant Madeline knows how to bring levity to the situation. That’s one skill where we excel. Too bad it doesn’t pay.

As long as I can intersperse my bouts of being a crybaby with joyful moments of crying with laughter, I guess we’ll all survive this mess in the long run.

Happy Birthday, Colorado. You’re 137 years old today. Of course, you’ve always been here land wise – so you’re really much older – but just because you drew some new boundaries you get to knock a few years off. I’m going to do that, too, when I finally get my face lift.

So. What’s new? Well, summer is almost over. Our “summer of fun” list sits neglected, overtaken by stupid cancer nonsense. The good news is that Ben is currently showing no evidence of disease after his biopsy. The bad news is that we have to find a maintenance regimen for him to be on – probably for the rest of his life. I can’t seem to get used to that. The threat of a monster attacking is much different than having to learn to live with the monster systematically attacking. My yearn for normalcy has been relegated to living in a cage awaiting appeal. It might never get out. It’s not that I’m being negative, I’m being realistic. It’s a whole new world to get used to. Ben will most likely always be fighting cancer. And when he’s not fighting cancer he’ll be fighting the side effects. And, on top of that, he’ll have to navigate the usual weirdness that comes along with adolescence. Some days, my heart simply can’t take it.

The moment he was placed in my arms my whole world changed. So many mothers feel that deep inner shift when they meet their child face-to-face, but for me, I never cared much for children, so my inner shift was quite profound. It was a shock to my entire being. I felt a love that I had never experienced before. I never wanted to be away from him. I hated going back to work because I knew I was missing something wonderful. He became my everything. We had so much fun together. And when he was diagnosed I just didn’t understand. This beautiful child. This wonderful boy. My heart. And we were living under the threat that he’d be taken away at any moment during that first year of therapy. When he got better and stayed healthy for four whole years, I thought he’d beaten it.

I thought for a long time that he’d get better and better and have a pretty strong chance at being a normal kid. But each time this monster strikes his body gets weaker. It gets harder. Not just physically, but emotionally, too. And while I don’t ever want my son to suffer, I just can’t bear the thought of losing him. None of this is okay. None of it.

So, what’s my option? Suck it up, I guess. Continue to be his caregiver. Stroke his bald head as he worries about a stupid needle poke. Hold the yellow puke bucket as he wretches. Tell him that I’ll never leave his side during this battle. I’m his sidekick. I’ll even wear a stupid costume if it would help anything. But the days keep going. I still have to wake up. And do the normal stuff. Even thought I’d rather not.

How do you train your heart to take repeated beatings? When will I ever get to the point where I’m not worried about losing him? My heart silently screams nearly all day long. I rock it and pet it and try to get it to quiet down, but there just doesn’t seem to be much relief. I’m hoping that this next study is the answer for Ben. People get all caught up in what worked (or didn’t work) for their kid versus what worked (or didn’t work) for mine. The reality of it all is that it’s a total crapshoot. Nobody knows. We’ve been able to slow it down here and there. We’ve even been able to beat it twice. But we just don’t know. We won’t know if he gets that next birthday until we reach it.

For now, I guess we just have to let it ruin a little bit more until we get it under control again. But it’s something that doesn’t want to be controlled. And I’m afraid that it will show us – again – that it’s stronger than we want it to be and we simply don’t have the tools to fight it.

How unfair is that?

The merry-go-round keeps a-spinning, friends. I feel like 20 years have been packed into the last three days. Good thing my skin didn’t decide to time warp along with my brain. I’d SERIOUSLY need that face lift STAT!

Okay. So. Last you heard, the “Ben – AKA ‘Matty Bear’ – information sharing disaster” was in its infancy. Over the past two days (with some serious sleuthing on Matt’s part) we’ve gotten some very helpful information and are receiving assistance from the law. I wasn’t sure if they’d be interested in helping us because we are just one needle in a haystack of many. Who cares, right? But, apparently, they do. Mostly because this heinousness happened to a vulnerable child. So, people who have had this happen to you, there’s hope. The authorities are VERY interested in crimes like this. They are ON IT! So, hopefully this will be one less thing we’ll have to worry about.

But what I really want to talk about – and what deserves to be discussed – is the fact that Ben shows NO EVIDENCE OF DISEASE. His latest scans occurred last week and they made the statement that his disease remained STABLE. To me, that says that there is still disease in there but it hasn’t grown or spread. So, I called to clarify. I explained that it was my understanding that they took out the entire tumor during surgery. There shouldn’t be any disease in there right now. So, when they didn’t use the terminology of No Evidence of Disease (NED) I was confused. I thought maybe it didn’t all come out. What it comes down to is that there is a weird spot on his liver that’s been hanging around for a while (well over a year) but it hasn’t grown or spread and didn’t take up the MIBG agent at all (which is usually how they find neuroblastoma)… Sooooooo, they believe that Ben has NO EVIDENCE OF DISEASE. Whooooo-hooooo.

Now, this is wonderful news, of course, but you need to understand that Ben is still considered to have chronic disease. It will more than likely come back so we need to have a maintenance plan. We’ve been given two options, which are both open here in Denver, and we’re reviewing them as I write this post. Both options are an oral agent – so very easy for Ben to take – and he’d receive scans every 6-8 weeks depending on which study we choose. It seems like the therapy would be minimally invasive with the exception of getting blood work done and scans more often than he currently does. And, whichever one we choose might be able to start as early as next week! This is AWESOME!

In other cancer treatment news, Ben is not hitting his stem-cell harvest out of the park. We currently have enough for just one rescue. To briefly explain what this is all about… Ben has been through a LOT of therapy over the years. His red cells, white cells and platelets have been put through the wringer. When he receives chemos or other brutal therapies, it knocks his blood counts way down until his stem cells can get busy making more red, white and platelets. Count recovery can get slower and slower each time his body takes a therapy “beating.” So, we’re trying to harvest some of his stem cells now so we can use them as a rescue when we need to visit one of these more toxic therapies down the road. Since Ben has chronic disease, the likelihood of him needing a rescue is very high. Right now we have enough cells for only one rescue. We need lots more. I want to focus on keeping Ben healthy, not denying him what therapies that might benefit him because he doesn’t have enough rescue cells.

So, we’re headed to the hospital in a few minutes to try a new drug with the hope of jump starting his purge of stem cells. I’ll let you know how that goes after tomorrow’s harvest.

Well, that’s all the news I have here. Mostly good stuff! But the best news is that Ben is currently showing no evidence of disease. Let’s hope he can maintain that status for good with the help of one of these trials.

Yesterday, Ben was chosen as “Brave Patient of the Day” by a FaceBook page called “Don’t Leave Me This Way,” an organization who brings healing through the arts. They put his picture up on their site for the day and we got some new followers/prayer warriors/friends. But the best thing to come out of it was a sweet girl named Kristyn who reported some shocking news. She said that she saw my son’s picture and noticed that he had a different name. She clicked on his info and learned that this kid that she’s been following for five years – YES, FIVE YEARS – was NOT a little boy named Matty Bear, but a boy named Ben.

Apparently, some pervert who has been following Ben over the last several years has taken it upon themselves to steal his illness. They created this character called “Matty Bear” who has stage IV “Pediatric Cancer”, loves Mario Brothers and video games and has a favorite nurse named Lauren at Denver Children’s Hospital… they’ve been watching us. They’ve even gone so far as to steal posts from my blog and try to make them their own. One of their posts talked about having thyroid cancer and blaming themselves for giving “Matty Bear” cancer… a direct rip-off of one of my posts. They’ve been doing this for years.

Interestingly enough, there are no pictures of Matty Bear on his website or on the two YouTube videos they have posted. They had up to 800 twitter followers, though. The only way I knew what was happening is when this sweet Kristyn forwarded a picture of Ben from 2009 – oh, I mean, Matty Bear – sitting in an infusion chair that I believe my ex-husband had posted on his site at one time or another several years ago.

What would make a person do this? There have been several cases of families shaving their children’s heads and telling people they have cancer just to get the donations. They’ve gone to jail for their disgusting practices. I can only hope that Matty Bear doesn’t exist – that they made up this kid entirely. I wonder if it was for attention? Perhaps. But I bet it was about the money. All I can say is I hope they made enough to cover the shit-storm that’s coming their way. I might not be able to catch you, but the proper authorities have been notified. If you’re not caught for this crime, “Jen,” you better be ready for Karma. Because it will most definitely bite you in your sorry ass.

Let’s not focus on this sorry idiot any longer. Here’s what I’m hoping today’s post will do: RAISE AWARENESS! Don’t just click “LIKE” on every cancer kid’s page you see. Some of them are not legitimate. Some might sing a good song and lure you in, but do a little due diligence. A true cancer mom will not be offended to answer a couple of questions about their kiddo’s treatment. I put my story out there for a reason. This journey has been grueling. It has changed our lives. I’m going to continue writing about it with the depth of emotion that I’ve always used. I do feel violated and angry that someone would be heinous enough to do the unthinkable, but apparently it happens more often than not. In talking with another cancer mom, she said it happened to her, too. But this pervert actually went so far as to create a character who died using images of my friend’s daughter and raised enough money to put their made-up character to rest. SICK. She then told me that it’s happened at one point or another to many of our friends.

I can’t stop other people’s disgustingness. But I’m not going to let them deter me from living MY LIFE. Yes. This is my life. This is my son’s battle. And while I would willingly let this pig have my son’s cancer to enjoy for themselves, it just doesn’t work that way. Cancer is not transferrable. But I’m betting that it will eventually catch up to them. In some way or another.

Several of my dearest friends over the last few decades have celebrated July 20 as their birthday. I always thought it was pretty cool because it’s also the same day as the moon landing (or the moon landing hoax – if that’s what you believe, or the day that Forrest Gump played a mad game of table tennis – review the movie if you’ve forgotten.) But it seems like people who have today as their birthday are compatible with being my BFF for a small period of time. I’ve always liked July 20th.

There are certain dates that seem to attract a lot of attention. September 11, of course. April 20 (Columbine, Hitler’s bday AND my first ex-husband’s birthday), and now, July 20th. Not just for the moon landing or the fact that many of my former BFF’s celebrate their birthday today, but for the unfathomable event that happened in 2012.

Last year on this date, my children and I decided to fulfill one of the items on our “Summer of Fun” list: attend a movie in our pajamas. I remember writing on Facebook, “I just bought tickets to the midnight showing of ‘The Dark Knight Rises’” And, of course, underneath my post it stated “Aurora, Colorado” as my location, because, well, that’s where I live.

We put on our pj’s and headed to the theater. About an hour into the movie, Ben and Madeline were both snoozing. My phone was blowing up. I looked at it to see what was going on and found a message from my friend Bobbi in Ohio asking if we were okay. Well, sure. We were okay. Then I read something unbelievable. She texted that someone in Aurora at a midnight showing of ‘The Dark Knight Rises’ had just shot up the theater. She just wanted to make sure we were alive. I shifted uncomfortably in my seat and tried to see if I could find anything online. There was limited information at that point. I agonizingly sat through (as the kids snoozed through) the rest of the movie. As we were leaving, some people were talking about the news as well. I grabbed Ben and Madeline’s hands and booked it out of there. When we stepped outside, there were police officers swarming the entrance. I guess at that point they were unsure if it was going to be a serial thing or not. We all but ran to the van and high-tailed it home.

Of course, there was no sleep to be had because my phone was on fire. People calling to check in. People crying as soon as I picked up the phone. Family stressing about the unthinkable. As the kids slept, I watched the news. The horrifying news that someone had killed several people just a few miles down the road from us. That theater would have been third on our list had we not been able to get in at Southlands or Arapahoe Crossing. Fortunately, our chosen theater did not sell out and we were able to stay close to home.

Sometimes I think what I would have done had that been the theater we were in. Pushing my children to the ground and covering them from gunfire while wearing my stupid polka-dotted pajamas. Then charging the murderer and ripping him apart with my bare hands – while wearing my stupid polka-dotted pajamas. And then being interviewed on the news as a hero for my bravery – while wearing my stupid polka-dotted pajamas. But it could have been worse. I could have died wearing those stupid polka-dotted pajamas. Talk about humiliating. Nothing like getting murdered while wearing a less than flattering outfit.

You know I’m NOT making light of this. It was a very sobering evening. Shocking. Horrifying. It just proves that nobody knows when their time is up. Who would ever think that they’d be murdered in a movie theater? But my weird brain reminds me of the advice that nearly every mother gives: always make sure you’re wearing clean underwear. I, personally, have never given that advice because if something scary happens, you’re going to soil them anyway, and your rescuer will never be the wiser.

So, today I’m thinking of all the people who lost their lives while trying to watch a Batman movie. And grateful for all the real-live “Batmen” rescuers who went into that scenario having no idea what to expect. And the police who were waiting outside for me and my children to make sure we were safe. And, of course, so grateful that we were not at Century 16. We were alive, thank God.

I’ve since retired those stupid polka-dotted pajamas for something more flattering, but I think I’ll resist wearing my PJ’s anywhere else. Ever. Just in case.

I said hello. That’s all. A simple hello to a stranger in a busy city transportation terminal. He was friendly so I didn’t think anything of it when he asked me to go with him. He said he knew a less crowded place where we could catch a taxi without all the competition. Okay, I said, my naiveté getting the better of me. I’ve always been way too trusting of strangers but never trusting enough of those I truly know. Moving from a bright and crowded locale where any bus or train or taxi could have whisked me away to any number of wonderful destinations but I instead listened to a voice that lured me elsewhere. I knew as I started to follow him that it was wrong. We chit-chatted about nothing important, a tactic he used to distract me from where he was really taking me. As the sky grew dark and the street lights turned on my legs grew heavier. My legs knew more than my brain at that point. Don’t follow him, Sarah. Go back to where it’s safe. But I didn’t know where I was. There were a few things that looked familiar to me, a house, a street sign, some lights in the distance, but it was too late. My back was hurting from making my legs work. Each step sent excruciating pain through my entire body. And just when I thought I couldn’t take another step I knew I needed to run. The stranger was leaving. Leaving me to die. I wonder if he got paid to betray me? And would he eventually feel guilty and hang himself for that betrayal? The black figures circled around me. Sniffing. Speaking to each other in a language I didn’t understand. They were dirty and ragged – apparently homeless. And I was in their world now. Their instincts outshone any survival skills I had. And as they closed in to rip me apart, I woke up in a cold sweat.

So what does that mess mean, friends? These are the kind of jacked up dreams I’m having. But on a lighter note, I’m thinking that if I never become a published author then I might like to be a tour guide.

I’m sure scanxiety is getting the better of me. I’m definitely one who can go with the flow but I have to admit that I’d like to know what’s coming up for Ben treatment wise. I have some friends who have to have every detail of every event nailed down but the world I’ve been living in makes no promises like staying on schedule. I’ve become a slave to the insecurity of it all. There’s nothing I can control except for how I react to it all. It’s clear from the dreams I’m having that I don’t feel safe or secure. But am I supposed to just lay down and succumb to it? That’s what I did in the dream. Maybe, after nine years, I feel like surrendering. But I don’t know what I’m surrendering to. I’m certainly not giving in to cancer taking my son.

So, back to this career path. I was at a party on July 4th up in Summit County with my friend, Miguel. The kids and I made a last minute decision (based on how Ben was feeling) to head up to the mountains to enjoy the day. If it weren’t for everything west of I-25 I would truly despise this state. I hate that I live in the plains. I hate that I’m not closer to the mountains. I hate Aurora. I know, hate is a strong word, but this place is not my Utopia. I miss Summit County. I miss the summers where it rains every afternoon and snows in July. I miss being able to cross-country ski out my back door. But, for now, Aurora is where I am. I’ll take day trips whenever possible.

Clearly, I’m having focus issues today. So I show up at this party with the kids. Miguel is already there. There are tons of kids for Ben and Mad to play with but they don’t know anyone yet. And Ben is bald. The other kids will have to adapt to that first. So, I started introducing them to kids I didn’t know and they quickly assimilated: playing ball, riding scooters, running around. As I looked around for Miguel I noticed that I knew quite a few people already from when I lived there in the 90’s. So, I jumped in the deep end, reminiscing about the good old days, when the inevitable question would come up: “So, what have you been up to?” Good God. Where to start? Last most of them knew I had just finished my MBA and was married to a Silverthorne Police Officer who was just accepted into the FBI. I looked really great on paper at that point in my life. So, I crammed 14 years into a brief paragraph. I got divorced. Got remarried, had two kids, got divorced again. I live in Aurora (to which most of them simply asked “WHY?”) and I don’t have a current occupation. I do nothing.

This was confounding to them. Nothing? You do nothing? That’s right. I do nothing. I’m not comfortable saying that I’m a stay-at-home mom. I’m not in the traditional setting: no husband, no home to care for or remodel, no regular stuff to look forward to. I write on my little blog, I do picture framing on a very limited basis, I color in fancy coloring books until my fingers bleed and I read a lot. When my children are with me it’s a different story. There’s plenty of fun stuff there, but otherwise, I do nothing.

Where did that fancy MBA girl go? Why did she give up a life of adventure and divorce the FBI agent? I thought she’d set the world on fire. She still looks pretty good. Maybe could lose a few pounds, but we’re all in that boat, right? And why does she do nothing?

Then my little bald-headed kid runs up to me to ask for a hamburger and they all say “Ohhhhhhhhh.” I don’t know why I’m reluctant to immediately say “My kid has been battling cancer for nine years.”  Seems superficially like a pretty big party foul. But what I found out is that my old friends found a new appreciation for the super-cool cat they once knew. Life happens. And it didn’t take away who I am at the core – in fact – it’s made me better. I’m still fun and funny and smart and friendly and all the other things that make up Sarah. But I’m wiser. I’m more compassionate. And I showed them that you can have a kid with cancer AND still have a weird sense of humor.

There was one dude who was thrown off completely. He came to the conversation late and didn’t see my bald kid. When he asked what I did for a living, I amended my prior statement to “I take care of my sick child.” He has a weird sense of humor, too, and said, “Oh. So you have Munchausen’s? You just keep your kid sick so all the attention is on you?” His wife was furiously shaking her head in an effort to tell him to “shut the f*ck up” but I played along. “Sure!” I said. “Everyone’s gotta have a hobby, right?” I could see everyone cringe but I was laughing. My weird sense of humor allowed me to play along. Then I finally confessed and said, “Seriously, though, my son has cancer.” He started to apologize profusely and I stopped him immediately. I told him while the situation was indeed tragic, there was no reason that we couldn’t try to bring some levity to the situation. And the poor fella, once he got comfortable and spent considerable time with my son just chatting about life, he walked us all out to the car. Upon seeing my car, which is a 1999 Mercedes station wagon, he said “You must be doing well if you’re able to drive a car like this.” And I said, “My mother died. I inherited it.” He threw up his hands in total surrender and said he just didn’t think there’d be any other way to offend me as much as he had. I laughed and told him that I didn’t mean to be a downer but it is what it is. And I’m certainly not offended, but people’s situations aren’t what they might seem.

The girl driving the Mercedes didn’t earn it. It was a gift that her fancy mother left behind. She doesn’t do nothing. She cares for her chronically sick child. She’s overwhelmed. She’s tired. She’s scared. She’s vulnerable. But she’s brave. And funny. And smart. Ultimately, she’s aged gracefully. She’s maintained the wonderful pieces and added so much more.

Ick. I hate talking about myself in the third person.

I don’t get out much. I’m always on the go but when it comes to having fun with adults, I usually don’t have that opportunity. My kids and I have a blast together. In fact, since Ben was discharged yesterday and we only have today off from the hospital before starting another grueling week (actually two) of hospital activity, we are heading for Idaho Springs to get some Beau Jo’s and (finally!) take a car ride up to Mt. Evans, which is the highest paved road in North America. This has been on my Colorado bucket list since the early 90’s.

I suppose I should give an update on Ben before I get started on anything else. Ben was released from the hospital yesterday after a brief bout with neutropenia and a more lengthy bout with kidney stones. Yes, I said kidney stones. From what I understand, kidney stones are some of the most pain-y-est (yes, I made up that word) pains you can have. So, add this to Ben’s “I Beat that B*tch” resume. Ben historically gives pain a very low score on that stupid pain scale of 1-10 that graduates from a smiley face to that “Jesus-is-coming-for-me” face*. It’s almost like he’s trying to get along with his pain. If he gives it a low score, it will leave him alone. He treats it like a bully, I guess. You’re just not that big of deal, pain, so just go away. Anyway, I could tell – despite giving his pain a “middle-of-the-road” five – that it was excruciating. After finally setting him up with a pain pump, the pain decided to go away. As soon as you have the tools you just don’t need them anymore.

Okay. So, tomorrow Ben goes in for his MIBG injection in preparation for his MIBG scan Wednesday. He’ll also have his CT scan on Wednesday. These are his first scans since hearing “RELAPSE” so my system just isn’t sure what to do with this information. I do have scanxiety, but it feels different this time. Thursday is our meeting with the bone marrow transplant team to learn about Ben’s upcoming bone marrow harvest. He went through a bone marrow transplant when he was three and they used most of his harvested cells for that procedure. It seems like most of the procedures that might be beneficial for Ben down the road require stem-cell rescues. Since Ben is now considered to have chronic neuroblastoma, we’re going to harvest as many cells as we can. He’ll have surgery on Monday, July 22, to insert a PICC line into each arm. He will be put under for this procedure, but they’ll hook him up for harvesting right after the PICC lines are inserted. The plan is to harvest each day until they have a big supply, and put them all in the freezer for future use. Hopefully his body will give up a lot of stem-cells so we can focus on getting him better instead of worrying about not having enough to keep him well.

Before you ask, we cannot use other people’s cells. We did save Madeline’s cord blood but we aren’t able to use that either because the stem-cells must be Ben’s. If you know anything about BMT, you know that there’s a horrible thing called Graft-Versus-Host disease (GVHD) where the body rejects foreign stem-cells. It can be fatal. It’s much easier for a body to accept your own cells, so that’s why we’re going through this harvest. I don’t like the phrase “harvesting” though. It makes me think of picking berries or corn or something agricultural. I don’t like to apply that term to anything happening to my son.

And before we know it, July will be over. After the next two weeks we’ll have a better idea of what’s next on Ben’s treatment schedule. We had nothing planned treatment wise after these initial two rounds of chemo, so we’ll have to figure it out as we go – or as the beast rears its ugly head. I cannot wrap my brain around the term “chronic” yet, I just don’t understand what it looks like at this point.

So, when my ex-husband asked me if I’d be able to use tickets to see Barry Manilow at Red Rocks (he’d received them for free from his place of employment) I jumped at them. My dear Paula (see my prior post titled “barefoot” to learn more about this extraordinary individual) was going to be in town to visit me for my birthday. Yay! FUN with an adult! And adding our former Ohio University mod-mate and recently minted Coloradan, Rhonda, to the mix just seemed like kismet. It was all meant to be. So, off we went. As we drew closer to the open-air venue, the rain moved in. A drizzle turned into a downpour, which turned into lightning streaking across the sky. Paula consulted Weatherbug and we made the decision to give it a shot regardless of the worsening conditions. I mean, my college pals needed to see Red Rocks. And who wouldn’t have fun singing Copacabana? And I showered! I put on makeup! I’d made an effort for crying out loud! Must. Go. To. Concert. We walked up the massive hill. We found our seats. The lightning kept happening with greater intensity. A spokesperson for the venue made the announcement of a delay based on possible threats of lightning activity. In other words, Barry didn’t want to get electrocuted. Neither did we. So we left. I have to admit that I was severely disappointed. I had to focus, however, on the fact that I was with two people who meant a lot to me. It might not have turned out how I planned but it still turned out. Barry didn’t perform anyway. Being 70 years old and at a higher altitude, I’m sure he didn’t feel that any rendition of Copacabana was worth tempting death.

By the time I got back to the hospital to retrieve my car, the rain had stopped. I tiptoed into the hospital at 11 pm just so I could peek in on my sleeping children and take them the glo-sticks we’d received at the concert (Thanks for giving yours up, Paula!) Ben and Madeline were laying in bed, wide awake, while Matt snoozed on the plastic couch. I handed over the glo-sticks, gave them smoochies and went home to hang with Yoshi.

I got a text from Matt shortly after my visit that Ben woke up in severe pain. This was from the suspected (now confirmed) kidney stones. I had just seen him a couple of hours before and received kisses from my sweetness. How could things change so dramatically in such a short period of time? And, in being nine years into this ridiculous life with cancer, why was I so surprised? Haven’t I learned my lesson that things rarely work out according to plan?

I walked over to Panera early the next morning to get my ailing son a croissant – his current favorite treat. As I was walking back toward the hospital in my downtrodden state, the sprinklers came on and drenched my legs. I held the croissant high above my head – like Gollum would protect his precious ring – and started humming a song to get me through. I’m already soaked in this crazy mess of a life. I can’t change it. Sometimes I wish for something completely different but then change my mind with the understanding that it could always be worse. This life doesn’t define me, but it is molding and shaping me. I can live with that.

And as I realized I was humming “I Made it Through the Rain” by the iconic Barry Manilow as I walked through those sprinklers towards my ailing son holding a croissant that might make him feel a little bit better, I felt a little bit better myself.

* See a greatly improved pain scale with the “Jesus-is-coming-for-me” option at hyperboleandahalf.com.

I had the pleasure of receiving a note during the spring of 1980 from a cute classmate asking the following: “Will you go with me? Circle one: YES or NO.” Now, some girls who were overly confident or being coy might scribble in a “MAYBE” and circle that option, but seeing how nobody had really asked me this question before I circled the heck out of that “YES” with my newly sharpened No. 2 pencil until there was nothing left but a nub. I was so excited that I didn’t even speak to the poor boy until 1986 when we graduated from high school and our relationship had been over since, well, the spring of 1980. I was so socially awkward. Boys were just not my strong suit. Oh, who am I kidding? I still have no skill with relationships even 33 years later. I should have held on to that love note, though. It was probably the sweetest one I ever received.

I wonder why we don’t use this form of communication any more? I could certainly use this in practically every situation. For instance: Would you like chicken for dinner? Circle one: Yes or No. Are you going to clean up your room any time soon? Circle one: Yes or No. Would you like to know when you’re going to die? Circle one. Yes or No.

I know, I know. That was a question that might require a little more than a handwritten note. But in talking to my dear friend, Ree, about her recent trip to Shanksville, PA to visit the Flight 93 Memorial, I was reminded of my own visit to the memorial for the Oklahoma City Bombing victims shortly after Ben was born. I was in OKC for a business trip to learn about some HR software that is more than likely severely outdated by now. I used to love going on business trips on my own before, but this was my first trip as a parent. Leaving my baby behind was nearly unbearable. Regardless, whenever I visit a new city I like to try to do the touristy stuff, too. Might as well, right? I mean, traveling to OKC was probably not going to make it to my bucket list, so I needed to make good use of my free time.

A few years prior to my visit I was reading about the design of the memorial. The article stated that the memorial would consist of chairs, one for each victim who perished in the bombing. I thought to myself that it just didn’t seem like it was enough to honor the tragedy of it all. I thought, in all honesty, that it sounded kinda dumb. So, I drove myself to where the Alfred P. Murrah building once stood expecting to see a dinette set with no table. I apologize for my cynicism, I am in no way, shape or form making light of this tragedy. In fact, I quickly learned how wrong my original thought of it being dumb was. First of all, across the street from the actual memorial, there’s a beautiful statue of Jesus with His back turned to the building. His hands are covering His eyes and a plaque simply states: “Jesus wept.” I knew I was in for a heart crusher. I walked over to the memorial with a bit of trepidation, knowing that something awful happened just steps from where I was standing. It was dusk. My eyes focused on row after row of bronze chairs emitting a soft glow of light, trying to replicate or remind me that each chair stood for someone whose light had been needlessly extinguished way too soon. But the part that absolutely broke my heart were the little chairs that stood for the children who perished in that bombing. Their parents had no idea that while they were taking them to daycare that morning that they wouldn’t be picking them up once the work day was done.

I went back to my hotel and wrote a long letter to my infant son. I told him how hard it was to be away from him and that I just couldn’t bear the idea of ever being without him. This was all before neuroblastoma, of course, but I went on to explain in my letter that he was so very important to me and how I wanted to cherish every moment of our lives together. The memorial had served its purpose. A painful and humbling reminder that life is so very precious – and way too short.

I am fully aware of the fact that we’re all going to die. That fact, unfortunately, is just closer to the surface in our lives than it might be in the average person’s world. Most kids with Ben’s level and relapse rate of Neuroblastoma statistically do not have strong survival rates. And that sucks beyond reason. But I could walk out in front of a bus and meet my demise at any given time, or slip through a crack in the ice and drown, which is how I’m pretty sure I’m going to die. So, according to my abnormal and ridiculous fear, I technically only have to worry about the winter months. Regardless, we all need to appreciate each moment we have.

The passengers of Flight 93 manned up at the end. They knew what was coming and they made their last moments count. The OKC victims didn’t have the luxury of knowing. I can only pray that their last moments were painless, but the pain of the survivors and those who lost their loved ones is almost too much to bear. After my business in OKC was over, I couldn’t get home to my son fast enough. I felt like somehow my presence was going to keep him from ever leaving me. That I could always keep him safe. I wish that was how it really worked. The fact is that my presence has very little to do against the suffering he’s enduring. But he knows I’m there. I’m with him always. Until whichever one of us breathes our last breath first.

I tucked that letter away for him. I hope he gets to read it someday after I’ve slipped through that crack of ice and he’s living with his wife and kids somewhere wonderful. I don’t want to know how it unfolds before it unfolds. Sometimes I think I do, but in reality I need to focus on appreciating THIS day. THIS moment. Because that all any of us truly have.

So, in this case of circling one, I’m going to have to say NO.

Interesting – but weird – side note: I was the HR manager for the company that provided the catering at Timothy McVeigh’s execution in 2001. No, they didn’t provide his last meal. The food was for the media staked out in front of the prison before he was executed.

I’ve always been a people watcher. My real-life persona is to be more of a wallflower than the Life of the Party. I know. This is shocking. How can someone as vibrant and adorable and fun like me be so shy? It’s true. I can put on my game face and be outgoing most of the time, but my true identity holds a shocking amount of introversion. Anyone who knew me before the age of 25 can verify this. I was SUPER shy in high school, a little less shy in college, a bit more outgoing when I was a young adult, but then I branched out in epic proportions when I was 25. Of course, I had a very brief boxing match with thyroid cancer at that point in my life, which seemed to be a game changer for me. I decided to throw out my rule book and start enjoying life. I should also mention that my confidence boost coincides with the first time I ever ate mustard. Maybe it was a condiment that changed my life instead of cancer? Nah.

Anyway, I love to watch people interact. I enjoy watching a conversation where people one-up each other and constantly try to talk over one another. I think that’s why I stopped talking in public at a young age. No one ever heard me. I just listened and collected and watched and (sometimes) learned. I can recall and imitate how my grandmother drank her coffee. I remember conversations that no one else recalls. If there ever needed to be a family historian on useless information, I’d be your girl. Things that might seem mundane to others were fascinating to me. And I think this little nugget of my personality is why I love to write so much – there’s no one to dispute me or one-up me as I’m letting my thoughts and feelings flow. There’s no one to make me feel like I need to edit who I am.

So, now that Ben is missing the aggregate of cylindrical, keratinous filaments covering his noggin (AKA hair), I’ve intensified my people watching while we’re out in public. Some people look at him and smile with a bit of sadness in their eyes. I can get on board with this scenario because cancer is pretty flipping sad, especially when it happens to a kid. Some children point and stare. I’m okay with this, too, because he looks different and they’re kids. How else are they going to learn? I just hope their parents aren’t telling them some made up crap. But most people look at him, then look at me to see if I’m looking, then look away. In many cases, they’ll steer completely clear of our path. And I just want to say to these people: “He’s not contagious.”

I realize that most people just aren’t prepared to see a boy his age without hair. It can be shocking. But if we can get used to people with offensive tattoos and the bejeesus pierced out of their faces and those gauges that stretch ears to the point of being able to tie them above your head in a bow, or ANY myriad of differences, then why do we have trouble looking at a kid without hair? Or in a wheelchair? Or with Tourette’s? Or with Down’s Syndrome? Aren’t we supposed to appreciate and celebrate our differences? Aren’t we supposed to learn from one another? Is the issue the fact that Ben’s illness isn’t self-inflicted? He had no choice in the matter, he’s hairless because of cancer, not because he’s making a statement or owning a belief. I don’t care if someone wants to wear their ear lobes as garter belts. That’s up to them what they do with their body. But I’m gonna look. I might even ask questions. I want to understand. I guess I just want people to understand what my kid is going through, too. It’s okay to ask. Heck. I’ll even direct you to my blog so you can read more about it.

As I step off my miniature soapbox, I’ll admit that not all people are afraid. Last night at Walmart, a young man in line behind us offered to pay for our order, which consisted of a package of AAA batteries and a copy of “Shaun of the Dead.” I’d already paid but thanked him anyway. It would have been odd for him to buy me that movie. The batteries? Sure. They were for Ben. But the movie was solely for me, and not a classic like “To Kill a Mockingbird” or something worthy of a benefactor paying for it. “Shaun of the Dead” is a classic, but probably only to me. 🙂 Then, another kind person at Panera bought us some cookies and told us she’d be praying for Ben. That’s always nice to hear. I’m sure if I were to strike up conversation with either of them, they’d probably divulge that they had been intimate with cancer – and it had most likely attacked a loved one.

The funny thing is, I don’t know a single person who hasn’t been affected by this dastardly disease in some way or form. And with those odds, I would think that the majority of the world would realize that it’s simply not contagious.

I’ve entered a new dimension where I feel like a million life-altering things have happened but I can’t remember any of it and I think it’s still 2004 and somewhere along the way I was riding a unicorn. It all seems like a bad – yet oddly comforting – dream. Or perhaps I’m just hallucinating due to all the stress. I truly need to write daily so I can keep on top of all the weird stuff that happens. As it stands, I’m barely keeping up.

Two weeks of life have vanished while watching Ben battle neutropenia and pneumonia. We were stuck in the hospital for two weeks. This certainly isn’t the longest we’ve been inpatient, but I wasn’t expecting such a lengthy stay. And the kicker is that Ben’s 12th birthday just happened to coincide with this overdrawn visit. Out of all the days that cancer could potentially ruin, it just wasn’t satisfied until it held him hostage on the coolest day of the year. Granted, I’ve had to make due on holidays before. In 2009, he lost Halloween, Thanksgiving AND Christmas. I bought a miniature Christmas tree for his room and decorated his IV pole with colorful lights and garland to make the best of Christmas. He was so doped up though, that he didn’t remember it. In 2010, he spent his 9th birthday in NYC undergoing radiation therapy. But at least he was well enough to be out and about in the big city and have a party at the Ronald McDonald House after his treatment was finished. Cancer is a big ding-dong for trying to ruin so many important pieces of Ben’s childhood.

It wasn’t all horrible this time, though. My dad came from Ohio. My sister and nephew came from Pennsylvania at the last minute for a surprise visit. And Ben had lots of visitors – from Wapiyapi peeps, to the wonderful school teachers from Canyon Creek, to the awesome ladies who hooked Ben up with his hearing aids… it’s clear that many people care for Ben. And, oh! The cards that Jackie Sharp collected… I tried to count and I believe that in addition to what she collected and what was mailed directly to me, there were around 400 cards. I taped some of them up in his room. So many wonderful sentiments from so many people (and even some stars of the Country music scene sent Ben their well wishes!) One of Ben’s biggest supporters, Joyce Webster, made sure Ben had a super awesome Superman cake since I didn’t have time to make one myself. I think that despite the circumstances, Ben had a pretty good day. Seriously, his cousin, Anthony, was probably the best gift. They had a blast together.

But here’s where I have to complain: I went down to the cafeteria for about 15 minutes to get Madeline some lunch. As I was coming back upstairs, the doctors and nurses were all standing around Ben’s room clapping. Then they dispersed. In the 15 freaking minutes that I was gone, they came and sang happy birthday to Ben. I was heartbroken that I missed it. If any of you have ever spent any time in the hospital, you know that the doctors always do their rounds at the most inconvenient time for you. You’ve gotta run to the bathroom, or you’ve just taken off the top that recently got puked on (and they don’t knock), or you’re starving… but you know the minute you leave they’ll show up. And that’s what happened this time, too. I pouted for a good 20 minutes, left the room for a few to call my girlfriend so I could cry my eyes out. Silly, I know. But with everything that’s been less than satisfactory lately, the last thing I needed was to miss a bunch of doctors and nurses singing off-key to my newly minted 12-year-old.

Not to mention that I have other stressors occurring. My thyroid is all out of whack so my hormones are unhappy. My sleep is suffering. Certain people have made me really, really angry. I missed Peter Frampton in Columbus on June 20 (bought a ticket when I thought we’d be in Ohio over Ben’s birthday.) And my beautiful daughter is having some major self-esteem issues. It IS often times more than I can handle. I’m constantly putting things on the back burner. And, for the first time in ages, Peter Frampton will just have to take a back seat. I’m going to see him in August anyway. At least, as long as cancer doesn’t ruin that concert, too.

Yesterday morning, I woke up after having a sleepover with my sister. I don’t know that we’ve ever truly done that in our lives. We’re six-and-a-half years apart and I’ve always been that pesky little sister. I wouldn’t say that we have a tremendous amount in common – she’s always seemed like an adult where I live as a chronic adolescent. Anyway, we watched tv together and laughed with each other as we sighed with relief from being out of the hospital. The kids were playing well together in the next room so we had some time to just be sisters. It was really nice. Anyway, the next morning when I woke up, we started chatting and I moved closer to give her a hug. As soon as her arm slid around my shoulders I started to cry. She was actually in mid-sentence when she realized that I was doing that freaky silent sobbing shake. I couldn’t control it. For the first time in a long time I felt like I was safe. I could cry and it would be okay. All the other times I’ve cried it hasn’t been okay. I don’t know how I came up with the categories of okay to cry versus not okay to cry, but at last I felt like I could finally break down. I think at first she was taken off guard, like, “Oh, shit. What do I do now?” But she performed perfectly. She said quietly, “I’m sorry you’ve had to be so strong for so long.” She rubbed my back for at least 15 minutes, not saying anything else. And when my sinuses couldn’t take any more, I stopped. And I felt better.

Sometimes I’m ashamed of who I am. I KNOW I’m an excellent mother but I often feel like I’ve failed in every other aspect of my life. I haven’t been a good sister. Or a good daughter. I’ve failed twice at being a wife. I’m highly educated but I’m unemployed and broke as hell. It’s not like I’m just some slack-ass sitting around smoking pot, eating Doritos and watching “Arrested Development” on a constant loop. I know that taking care of my son is priority and I’ll proudly continue to do that. But I feel like everyone says, “Oh, crap. Here comes Sarah. What is she going to need this time?” Logically, I understand that it’s a bunch of baloney. But emotionally, I just can’t wrap my mind around the fact that I’m NOT a failure. It does often suck to be me. And I wish it didn’t. Trust me. I’d love something entirely different.

I don’t want a world of cancer. I want to go back to 2004 when my son wasn’t sick. I wish I could have used my degree long enough to pay for it. I want my daughter to understand that she is beautiful just as she is. And I want to be able to take care of myself and my children by my own means.

And I’d really love to ride on that unicorn.