Out Damn Spot

It’s difficult to thrive when there’s so much on my mind but none of it wants to come out. I’ve started this particular post several times – over several different days – yet words are just spinning in my head instead of flowing onto the screen of my award-winning* blog.

I’ve resumed my world-famous defense mechanism of going into hiding. Not answering the phone. Not responding to messages. Muttering under my breath and taking out my anger on non-essential insects. Honestly, we do have a ridiculous amount of moths around here right now – and since Ben and Madeline are seriously freaked out by any type of flying bug (it’s borderline phobic – like my issue with clowns and ticks) – I’ve been doing a lot of bug killing lately.

My homicidal tirade hasn’t helped to elevate my mood because I’m thinking of that spot. That damn spot. The spot that might be nothing or the spot that might be recurrent Neuroblastoma. Ben’s scans were last week. And the time in between that last scan and when the doctor comes in to discuss the results are like the preparation of ripping off a band-aid. JUST TELL ME THE RESULTS OR I’M GOING TO GO MAD! So, I’m all prepared to lose some hair where the sticky bits of the band-aid has adhered to my skin. I close my eyes tight and grab the loosest end, getting ready for the sting of ripping hair out from the root. I even turn my head a bit like there’s a physical blow accompanying the follicular extraction. When the doc says “No Evidence of Disease,” the sigh of relief gives the sensation of “that wasn’t so bad! Yay! I can heal!” When the doctor says “Relapse” the fallout is horrendous, but at least we know that we need to come up with a plan. But when the doctor says “we don’t know what that is but we’ll have to wait five weeks to do anything about it,” well, I’m thinking this is a little worse than “relapse.” At least, that’s how it feels right now. I didn’t get the luxury of relief and I wasn’t told I needed to get out my armor again. I’m in a holding pattern. And it sucks.

So, there’s a spot. It’s near the area where he relapsed last time (near his collarbone on the left hand side.) Most of his major cancer activity has been on the left side. Left adrenal gland. Left rib. Left neck. Left collarbone.

Crap.

There is a possibility that it’s nothing. Of course, this is what I’m hoping for. But the wait until we can scan him again is excruciating. Meanwhile, when the doctor explained it to Ben, he said “I really feel that this is nothing.” And I’m not sure, but I think he’s forgotten about it. He’s focusing on finishing school this week and going to camp the first weekend in June. He’s moving on. I’m trying to take my cues from him, but I’m not nearly as strong as he is.

So… that’s that. And until I know what that damn spot is, I’m going to be crazier than usual. I’m trying really hard to appreciate each moment. I am. But in watching him this very minute as he tries to get through a morning of school… his nearly 13-year-old mind looking forward to the break of summer… the essay he just wrote about wanting to create video games when he grows up… the kind soul that personifies my darling son….

I’ve simply lost my tolerance when it comes to this stupid cancer nonsense. I know it thrives on sucking the lives out of the patient and the caregivers, but I feel we’ve given enough.

Enough already.

Enough.

 

*This blog hasn’t won any awards except in my mind. 🙂

 

Superstitious with a side of Hope

I’m a quirky kid. NO doubt about it. I have weird rituals that I participate in during intense moments of my life that seemingly make things better for short periods of time. I’m sure it’s all in my head, but it’s only weird if it doesn’t work, right? I mean, that’s what all the sports stars say. They’ll wear the same socks for an entire season as long as the winning streak continues. Don’t screw with a winning streak. Do NOT jinx yourself, no matter how weird the behavior seems.

So, when scan week comes around for Ben, I throw myself into a self-inflicted tailspin. I get super crazy. I withdraw. I obsess. I “what-if” the heck out of every scenario. I brood in the dark. I cry in public places. I hyperventilate like my plane is going down and getting ready to explode in a fiery crash that consumes my entire being in flames. And somehow, this masochistic ritual is only allowed to end when the doctor says, “Ben continues to show no evidence of disease.”

And then I’m good (kinda) for another three months until it’s scan time again.

Why do I do this? The answer is simple. There were exactly two times when I didn’t – and it did NOT go as I had optimistically planned. The first time was in 2009. Ben had been doing well for a couple of years. We were fully ready to embrace annual scans and had one more year before being invited to join the “Hope Clinic,” which I believe is the Holy Grail of cancer survival. Once you hit that five-year mark, you’re supposedly all better. You’re allowed to move away from cancer. It would grow ever-distant in the rearview mirror as normal life replaced all the nonsense. I had a feeling of euphoric joy as we were leaving the hospital after those 2009 scans, only to be crushed a few hours later with news that a new tumor had been found.

Then, just a year ago, Matt was driving Ben and me to the airport for scans in Kansas City. I remember it was a sunny day. As we were pulling out of my apartment complex, I said, “I feel good about these scans.” Matt said he did, too. And within a few days, we would be crushed again by the news of another relapse. So, I had two times of optimism destroyed by neuroblastoma giving me the finger… I kinda don’t trust it anymore. So, my superstitious nature takes over.

My mom once scolded me for being superstitious around scan time. I was kinda peeved that she didn’t mention it before – like maybe when I was a kid and developed my superstitious nature. According to her, I hadn’t added to her happiness OR her back health by avoiding stepping on cracks. That means I did a lot of extra maneuvering on the sidewalk for nothing. She was also suggesting that it was okay to walk under a ladder (I still will NOT do that.) I also had a long-standing uncomfortable relationship with always looking at the clock at 12:13. ALWAYS. It meant something weird. I just knew it. I’ve made peace with 12:13 now, but the rest of my superstitious nature is still intact.

The funny thing is, I know this is nonsense. It doesn’t matter what I say or do or how long I go without shaving my armpits or if I walk down the stairs backwards while humming the National Anthem of France. I have no control. It doesn’t matter how hard anyone prays. Or how many people say “He’ll be fine. I just know it in my soul.” I used to live for people saying that sort of stuff. Now, I realize, that even doctors don’t know. Ben’s New York doctor said, “I believe Ben is curable.” I ate that up. I wanted so bad for that statement to be true, so hearing it from a professional was the shot in the arm I desperately needed. Too bad that doctor just didn’t know. I was mad for a while about her false advertising. But I realize that she was just being hopeful. Hope goes a long way. But hope is tricky.

I know I’m sounding defeated. That’s not what I mean. I am hopeful. I’m just saying that the two times I got overly confident, hope kicked me in the butt. I’m kinda tired of being kicked, especially when we’re already down.

So, for the next few days, expect me to be cranky. Anxiety-riddled. Irritated. Weepy. Withdrawn. Scared. Pissed to no end that we’re still at it. All with a side of hope. Just stand back and let me do my thing for a couple of days, okay?

I guess I can call my state “optimistically superstitious.” But, hey. Whatever works, right? We’ll get through it.

We always do.

 

 

 

Appreciation, Part II

I was crazy to think that I could afford nurses AND teachers the love they deserve in my usual 1,000 word or less posts, so here’s an addendum to my “Appreciation” entry where I’ll focus the love on the nurses we’ve known.

Over the last 10 years of Ben’s therapy, I can honestly say that there was only one nurse I didn’t care for. She was old school. And she didn’t seem to like children. I found it odd that she was allowed to be on a floor that demanded long-term compassion. Fortunately for us, we only had to endure her negativity for a brief period of time because the majority of the nurses would FIGHT over who got to care for my fine young son. I’m not joking! Ben is such an easy going kid that it was never an issue to find an excellent caregiver.

I’ll never forget landing on the oncology unit back in 2004. Ben’s illness was supposed to be a hip infection, not cancer. People kept bombarding me with information regarding a five-syllable word that I’d never heard of, nor did I care to get to know. But it was evident that given the stage of his disease that we would eventually become quite intimate. Those first few days was a bizarre orientation of sorts. A binder filled with checklists. Staff explaining our new life. Specialists of all sorts poking and prodding. I was in a daze. I didn’t fully accept what we were in for until someone handed me a special parking pass for the garage. Only then did it sink in that we were going to be at the hospital… a lot.

As I started to find my “groove” in this hellish new world, I found that the nurses were more than just caregivers for my son, they became my family. When I would wake up crying in the middle of the night, they would take care of me. When I didn’t understand something, they would explain it to me. When I was scared about a scan, they would console me. When I needed to focus on getting Ben through something, they would take Madeline on a walk. Nursing went beyond my son. They weren’t just taking care of him, they were taking care of all of us. And what I loved the most? They always called me mom. I’m sure this was part of the plan, the patient’s name was on the door – so that was easy to remember – but the parents? It was more difficult to memorize all of the caregiver’s names too. But “mom” was all I needed. It reminded me what my role was. Mom. I’m Ben’s mom. There’s no one more important or more needed than mom. So, when the nurse would come in to take care of Ben, before they headed out into the hall to tend to another kiddo, they would always ask, “Do YOU need anything, Mom?” It often drug me out of the dark corner where I would sit worrying about what was coming next. Mom. I’m Mom. Pull it together, dipshit. You’re needed.

I didn’t know how to care for my son on my own. I needed these nurses to get me through. And eventually, I started watching what they did so I could at least be helpful. I knew how to do the stuff that normal parenting calls for, but changing the dressing on a catheter or giving a shot or finding a (tricky) way to administer medicine was all a gift given to me by extremely skilled nurses.

I remember being asked if there was anything I needed as the nurse started to leave the room. I turned from my usual chore of staring out the window to ask her “How do you do this every day?” She came over to sit next to me and said, “It’s simple. I love your son.” Knowing that my son wasn’t the only patient on the unit really touched me. She loved every single child on that floor. I couldn’t fathom watching these children suffer day after day. Some of them surviving. Many of them dying. How could one not get attached to every single child in such a job? One explained it to me extremely well. She simply stated, “I do get attached to every child. And if they pass away, I mourn. I get angry. I feel deeply. But then I find a place in my heart where they’ll always stay. I keep them with me always.”

I took that bit of advice to my own heart when we started losing our little friends. Love them. Appreciate them for the lessons they’ve given us. Then find a place in my heart where they’ll always stay.

One of the things that always floored me was that many of the nurses on our unit were expecting children of their own. How could they have a baby when they were surrounded by sick children every day? I think that would scare the crap out of me. When I asked one of the nurses if she was afraid, she said no. What she said next would impact me in a way that I still carry with me to this day. She said, “My concern is that I’ll have trouble loving my own child as much as I love your son.” I smiled at her through my teary eyes and told her that her concern would quickly dissipate the moment she held her own baby. Of course, I was right. But I’ve never forgotten her words as they touched me very deeply.

Now, I cannot mention all the nurses we’ve had here as there have been so many. But I want to thank each and every one of you who have ever had anything to do with my son. Thank you for holding my hand. Thank you for making me laugh when I thought I couldn’t. Thanks for encouraging me when I had no idea what I was doing. And a VERY BIG Thank You for caring for my son AND my daughter.

And for calling me Mom.

Appreciation

It’s appreciation time for nurses AND teachers! Some of my very favorite people in the world are superstars in either occupation and while I appreciate them EVERY day, I’ll amplify it today with a little blogging love.

My first grade teacher was meaner than a box of snakes and could have easily set the tone for a lifetime of hating school. Oh wait. I kinda did. But I won’t blame her. I am convinced that I suffered from some ADHD (minus the hyperactivity component) and just couldn’t focus. However, there was no such diagnosis back in my day and I just had to muddle through until a teacher cared enough to reach out to the painfully shy and academically struggling – yet deliriously adorable – little Sarah. I’ll admit, all other teachers – besides the evil first grade teacher – did a pretty good job of showing me a lot of love. Miss Marshall, Mrs. Smith, Mrs. Worrell/Mrs. Toma and Ms. Kaschak got me through elementary school. Once I transitioned to middle school, I got lost. That sensation lasted until 10th grade when a wonderful Creative Writing teacher, Mrs. Doran, insisted that I put all those emotions of being lost into writing. I’d been keeping a journal since fourth grade (what I wouldn’t give to still have those!) but Mrs. Doran encouraged me to take it further. I also learned that I was pretty good at photography thanks to Mr. Moll. Without those two teachers, I probably would have slipped through the cracks entirely. When Mrs. Doran suggested I apply to college, I remember how foreign it sounded. I honestly never thought I’d go past high school. I don’t know why, but I just never did. Unfortunately, during college, I got lost again. I finished, but I wasn’t where I planned to be. By then, I’d abandoned writing and photography altogether – the two things I’d gone to school to further develop. I really regret that.

Regardless, many teachers put their heart and soul into developing these little people every day. It’s a selfless – and often thankless – job. My children have had AMAZING teachers from the very beginning. I love everyone in the Cherry Creek School District, from the teachers to social workers to administration. Everyone has been so accommodating and loving where Ben and Madeline are concerned. Madeline’s entire academic career has been a severe struggle until this year. Her teachers would often report that Madeline would simply “zone out.” She acted like school was something that was being “done to her” – almost like some sort of punishment. She was flat. She was glazed over. And anyone who knows her realizes that this is NOT her personality. Her third grade teacher, Mr. Campbell, was able to pull her out some. Madeline adored his energetic teaching style. And this year, Maddy has Mrs. Burgeson. This amazing teacher has been instrumental in helping us figure out how to help Madeline. And not to promote the use of pharmaceuticals, but using an ADHD drug for Madeline has made a WORLD of difference. If it wasn’t for Mrs. Burgeson’s support on this, we’d still be at square one. These teachers go above and beyond the classroom. It’s not just a job. I know they don’t leave the kids at the door when they exit the building. There is no separation. It is a labor of love. And I would be lost without their support.

I have to give special kudos to another teacher who has touched our hearts and will forever be a part of our lives: Ms. Brenda. She was Ben’s home/hospital teacher for a long time. I LOVE HER. She was so patient with Ben. She incorporated fun into his lesson plan. She came to us wherever we were. She saw Ben at his sickest. She saw me at my depressed worst. And when it came time for Ben to choose a hero for a school project, he chose her. Not a doctor or one of his parents or another family member, but our beloved Ms. Brenda. She has made such a rich impact on all of our lives.

Thank you to Ben’s teachers: K-Ms. Debbie; 1st-Ms. Gay; 2nd-Mr. Willsea; 3rd-Mrs. Burgeson/Ms. Brenda; 4th-Ms. Brenda/Ms. Cartwright; 4th (do-over) Mrs. Clayton; 5th-Mrs. Simonich and the sixth grade staff at Thunder Ridge Middle School for getting him started on his middle school journey (we’ll be back!)

Thank you to Mad’s teachers: K-Mrs. Curry; 1st-Mrs. Willsea; 2nd- Ms. Klem; 3rd-Mr. Campbell; 4th-Mrs. Burgeson.

And, of course, all the support staff and volunteers. Mr. Monley the art teacher, Ms. Willett in the computer lab, Mr. Smith in the gym, Mrs. Lemmon-Elrod in music… so many wonderful and giving people. I know I haven’t mentioned a few, but it doesn’t mean you’re not important! It just means that my brain is on overload.

All these wonderful people have more than made up for the Medusa I had for first grade. THANK YOU, Teachers, for everything!

It’s clear that I’m going to have to celebrate nurses in a different post (don’t worry, I can’t possibly let my appreciation for all our beloved nurses go unmentioned, tune in tomorrow.)