Support

Recently, I went to Victoria’s Secret to purchase a bra. This is probably one of my least favorite activities on the planet because I tend to test drive a bra before I purchase it. This requires an extended study of various arm/body movements: walking with a normal gait while exhibiting a mild swing to the arms; a light jog with arms filled with imaginary bags of groceries; chasing after an imaginary dog in an imaginary rainstorm; handstands (in case I ever do one at a party, I don’t want my bra to fall off)… And all these scenarios require WAY more room than they provide in those teeny-tiny fitting rooms. The associates must think I’m mad.

Finding the proper support with comfortable straps and elastic that doesn’t cut off your circulation requires a much more than just trying it on and seeing how your boobs look when you pose in the mirror making duck lips at yourself. And color has very little to do with it. Suffice it to say that finding a good bra is extremely difficult. But once you find the perfect one, you’ll never let it go. Your best bet is to buy them out so you’ll never be without proper support again.

So, when I learned recently that I’ve been wearing a bra that is two sizes too small (!!) imagine my relief when the nice lady brought me one that actually fit! I felt like a ding-dong though. She asked me my size and I said **. She cocked her eyebrow in disbelief and said “No.” Then she whipped out a measuring tape and headed for my lady bits. My shoulders thrust forward to defend my honor, to which she summoned me to relax. After all, this was her job. I needn’t be embarrassed. But I was. Here I am – nearly 45 years old – and I had been wearing the wrong size bra for who knows how long! That’s something one should know about themselves. I had been needlessly living an uncomfortable life for a long time. I was kinda pissed that I’d wasted so much time living a lie. But it was encouraging to learn that I finally earned some boobs – I suffered from “surfboard-itis” for many years – which makes for a miserable high school experience.

And here’s where I segue into what I REALLY want to talk about: Support. When Ben was first diagnosed with cancer, I felt completely alone. Sure, there were family and friends and tons of people sending cards stating their encouragement, but I was alone. Matt had work. Mom got to go home at night. Friends who visited returned to their well children. And I sat, day after day, watching my son battle something I couldn’t see. A monster that was tearing him apart on the inside. And while I was comforted by holding my sweet toddler in my arms, I couldn’t really discuss with him how I was feeling. The doctors were always very professional and brief… they weren’t there for emotional support. The nurses were better… often answering my questions and telling me how they all fought to care for Ben because he was the best kid ever… but they had other patients. I had friends who’d had miscarriages and even a couple who’d experienced a stillbirth. All tragic. But no one of my acquaintance knew the insecurity. The unknown. The terror. The hope or lack of hope. The anger. It was isolating and paralyzing. And, to make it worse, I knew of NO ONE who had survived the same diagnosis that Ben had. There had been children with lower stages of neuroblastoma who had survived, but no stage IV’s who had survived long-term. It was horrifying.

Then, a lady came to visit me one day while I was in the hospital with Ben. She was part of a support group called Kids-N-Kamp. She gave me the information of who they were, what they did, and when they met. I stuck it in a folder and forgot about it for a few months while we were in the thick of Ben’s treatment. I’m not sure how it all transpired, but I ended up going to a mom’s night out – a monthly potluck – and fell in with the greatest bunch of ladies EVER. Initially, I felt much like I did when that lady tried to measure me for a bra. Don’t touch me in an intimate spot. I’m going to thrust my shoulders forward and bar you from coming closer. However, we started sharing like we were members of a 12-step program and from there the healing truly began. They showed me it was okay to cry. It was okay to be scared. It was okay to laugh inappropriately and make some really ridiculously “un-politically correct” statements. I was perfect how I was.

This group of beautiful women knew how I felt. Some of them were done with treatment. Some of them were still battling. Some were facing a relapse. Some had lost their children. But they all had a knowledge that I had been seeking. They got me through some major crap. And when we moved to Colorado, I mourned the loss of those ladies. I tried to find a way to reproduce that group here, but it just never worked out. My Kids-N-Kamp ladies set the bar so very high.

One of my precious memories was the Mom’s Retreat Weekend. Once a year, the KNK moms would get together and head to Amish country. The house we stayed in was beautiful. Relaxing. An opportunity to discuss heavy stuff, laugh about silly stuff, eat a bunch of junk food, and take a small break from cancer. My first Mom’s Retreat was while Ben was still in therapy. My roommate was Aimee. She had lost her infant son to leukemia. I remember staying up late with her and laughing hysterically like we were at a grade school sleepover. I know we were pissing off our neighbors who were there to partake in the quiet Amish atmosphere, but we couldn’t help ourselves. And just as we would settle down, one of us would start up again, giggling like we were as carefree as children. It was so precious.

The following day I went outside to walk the extensive grounds. The sun was shining and the warmth surrounded me like a thick blanket. I sat down on the grass to take in my surroundings. The llamas wandering around were fun to watch, but what caught my eye was a small, white flower standing alone amidst blades of vivid green grass. I thought that it must be lonely standing there on its own. But as I opened my peripheral vision a little further I noticed a few more flowers. They were all surrounding this one lone flower. And as I started to see the symmetry between myself and that flower, I noticed that it was not alone at all. There were many like her – just like her – all around. Just waiting for her to say she was ready to let them step in to offer their support.

My KNK moms are leaving for retreat tomorrow. Oh, how I wish I were going. Have fun, my dear friends. Know I’m thinking of you and hoping you have the opportunity to get all you need. Please know that I’m still here. I might be 1200 miles away, but I’m thinking of all of you. Knowing some of you are tired. Knowing some of you are scarred from the battle. But I’ll light my candle – the one that bonds us all together – and reflect on our times fondly.

All of you are better than any bra I’ve ever had.

Don’t waste your time with this one…

When I was around eight years old, my step sister used rope to tie me to a chair and torture me for hours on end. She would release me just moments before parental guidance showed up and threaten me with bodily harm if I dared tell anyone. If she was willing to tie me in a chair then who knows what she was truly willing to do to me if I happened to tell on her. This happened often. Not daily, but at least once a week for several years. No one seemed to notice. Of course, I wore long sleeved shirts and pants in the summer to hide rope burns, blaming my desire to be fully covered on the fairness of my skin. It’s a lie I’ve been telling myself my whole life.

The interesting thing is, when my mom finally uncovered a journal that described in gory detail all the horrible things she used to do to me, mom confronted me with the writings first. I denied them. I so desperately wanted to tell mom what had been happening but I was so scared of what my step sister would do. I hid in my room while mom confronted her with the journal. I heard them in the hallway discussing it. And what was so interesting was the unflinching way she totally confessed to what she had been doing to me. “Yep! I did that.” She didn’t lie. She didn’t make up a story. She didn’t try to blame me for making her life so difficult that she had no choice but to tie me in a chair because I was that bad. She fully confessed and seemed kinda proud of it.

I admired her lack of cowardice. Because here I was taking it all these years and making excuses as to why I deserved it. I blamed myself for her poor behavior. I let her do those things to me without a fight. I was the epitome of a coward. And it kinda set me up to take everyone else’s bullshit for the rest of my life. I’ve surrounded myself with people who don’t deserve the strength I’ve been hiding for so long. I’ve been giving it to the wrong people for years and they’ve sucked me dry.

I’m done. If you have malicious feelings for me, we’re through. If you enjoy gossiping about me, we’re through. If you’re sick of hearing about my struggles with my sick child, don’t listen. Here’s a news flash: I DON’T NEED YOUR HATE AND I’M THROUGH CATERING TO YOUR MENTAL ILLNESS. Work on yourself. I’ve got my own stuff to do.

I’ve enlisted the help of a handful of people I completely trust to start my life over. No excuses. I can’t change what’s already there, but I’m done with the self-loathing path I’ve been on because I’ve been conditioned to believe that I deserve it. If you don’t wish the absolute best for me then you’re out. I’m not saying I haven’t screwed up and hurt other people. I have. But overall, I’m a pretty awesome person who has a lot of love to offer. And I give it pretty freely until I get to the point where I’ve been hurt too many times.

Let’s all take responsibility for our own actions, shall we?

I probably shouldn’t write when I’m mad. 🙂

 

How I missed the boat…

Most people who regularly read my blog understand that I am a big fan of music, especially classic rock. For me, there was never a reason to journey far past my love of such masters like The Beatles, The Eagles/Joe Walsh, Peter Frampton, Elton John, and Boston. There are, of course, some bands that I’m not as enamored of, like Pink Floyd (they made me wreck my car in 1997), AC/DC (all their songs sound exactly the same to me), and, much to the dismay of my great friend, James, RUSH.

I will admit that RUSH has had a prolific output of 30+ albums over the past four decades. To be able to span the years like they have – and maintain their original three-man line-up – is amazing. Plus, the sound that they are able to produce with just three musicians is phenomenal. I will give them credit. They have surpassed what most artists only dream of doing and they will rightly take their place in The Rock and Roll Hall of Fame this coming Thursday as a 2013 inductee. It is long overdue. How Madonna got in before they did will always astound me. Of course, my beloved Peter Frampton is NOT in the Hall of Fame as of yet, which is a whole different point of contention for me.

I admit that RUSH are legendary musicians. I do enjoy their instrumental work. But there is something about lead singer Geddy Lee’s voice that unhinges me. It’s not so much in their later work, but in the first couple of mainstream releases, especially “Closer to the Heart,” his voice is way too high and it scratches my soul like a needle skips across an entire album. Now, in their later work, his voice comes down at least an entire octave. Perhaps he hit puberty and his voice dropped in their later work? I don’t know the answer. But, to me, the vocals on, say, “Roll the Bones” is much more palatable than “A Farewell to Kings.”

And here’s how my choice of not embracing RUSH has ruined – or will ruin – my life:

a) I will never gain full access to “The Boys Club” consisting of my good friends James, Scott, and Stick. Granted, I don’t have that pesky “Y” chromosome, but that fact in addition to my disdain for RUSH has kept me from being fully invited into this group. Two major strikes. The Boys did relent and let me go record shopping with them once, but I am banned from major club events like a prized invite to the annual NHL draft. No non-loving RUSH girls allowed. This has had a profound negative effect on my life. Just think of all the young, hot, hockey players I haven’t had the opportunity to meet!

b) The members of RUSH are Canadian. I’m fairly confident that loving RUSH is a law in Canada. So, when I am a famous author and am embarking on my first International book tour, I will not be welcomed in Canada. Sure, I like moose, ice hockey, and the Mackenzie Brothers. Heck, I’ve even embraced curling! But my non-love of RUSH will certainly encourage those of the Great White North to dub me as a “HOSER” thus making my agent have to work that much harder to gain acceptance of my work.

c) I have not been invited to any of this year’s Rock and Roll Hall of Fame festivities, which adds to my chronic depression. Walking a red carpet is definitely something I want to accomplish before I die and I’m only getting older. I’d like to do this sometime before needing my first face lift, which is right around the corner.

I’m sure there’s more, but this is all I have right now.

Okay, here’s WHY I’m writing about this. I lost a bet with James D. Queener. He is one of my best friends. While we have many things in common, we have quite a diverse array of things we do NOT agree on. We both love a well-crafted beer, hockey, baseball, the movie “Slap Shot,” and music (especially concept albums). However, we generally don’t agree on anything political. I’m a bleeding heart liberal (to some degree) and he is very conservative. He hates vegetables. I love them. He thinks cats are evil and, well, I’m beginning to agree with him to some degree on that one. 🙂 Anyway, at the beginning of hockey season, we make a bet based on our favored teams. James follows the Columbus Blue Jackets religiously and I am a big fan of the Colorado Avalanche. Now, being from Central Ohio should dictate that I pay allegiance to the Blue Jackets. And I do. Unless they’re playing the AVS. My reasoning is this: I lived in Colorado for the inaugural season of the Avalanche. They won the whole shebang their first time out, which was nothing short of amazing. I was hooked. When Columbus decided to get a team of their own, I was excited. However, I was dedicated to my AVS. I wasn’t going to break up with them just because another team came along. I root for the AVS no matter what and I root for the CBJ whenever they’re not playing the AVS. I think that’s fair.

So, the AVS and the CBJ had three games against each other during this short season. The AVS won the first game. CBJ won the second game. Last night was the final showdown. The first period was unimpressive but something happened in the second period that set both teams on fire. After that, it was a nail biter. Of course, if I won, then James would have to do something he didn’t really want to do (which I’m saving for next year.) And if he won, I would be required to write about anything he chose. Unfortunately, this is the second year in a row that he has won the bet. Last year I had to write a confession about what I did with his prized X-Files VHS tapes that I “borrowed” in 1994, and now this year I have to write about his favorite band. I can’t imagine what he’ll make me write next year – IF he wins yet again. With all this writing he’s making me do, I guess I’ll have no choice but to make him my agent. Hey! Since he loves RUSH so much, he’ll afford me that Canadian audience I so greatly desire. Problem solved!

So, James, I truly missed the boat on RUSH. I’m standing on the shore, waving my arms, asking – no, PLEADING with them – to come back for me. After all, Geddy has finally gone through puberty and I feel more comfortable being in a committed relationship with them now.

Isolation

At this very moment, my friend, Lori, is in Philadelphia with her nine-year-old son, Justin. They’ve been traveling all over the United States trying to get rid of effing cancer. Justin has been to Denver, New York, Michigan and now, Children’s Hospital of Philadelphia in hopes of eradicating neuroblastoma. Let’s pray this time it works.

Justin and Ben have the exact same disease: Neuroblastoma, Stage IV, high risk for relapse, unfavorable tumor, with the nmyc gene “unamplified.” This means minimal to the average person but to us, it’s terrifying. The one benefit of Ben and Justin’s identical diagnoses is that the nmyc gene is unamplified. This generally means that the neuroblastoma isn’t as aggressive. Most children with advanced NB have an amplification, which makes it tougher to battle because it spreads like freaking wildfire.

So, when Lori and I first met, we took that imaginary breath that stated “it could be worse.” However, where my Ben has relapsed just one time, her Justin has relapsed FIVE times. They get it under control only to have it come right back. Ben and Justin were on the same study in NYC. In fact, while we both live here in Aurora, CO, we happened to see them more in NYC at the Ronald McDonald House. We were traveling that much.

Ben and Justin both love video games and Legos so they would often hang out with each other and play. Justin is a couple of years younger than Ben, but they are both old souls. They get along very well. They don’t talk about their cancer. They just go in with the understanding of “Hey, this crap doesn’t define us. Let’s just be kids and play some Wii.” Lori and I would sit there and do the worrying for them.

My lovely Lori. She has incarnated nearly all her nine lives with so many relapses. She remains positive and keeps up the fight. Like me, her marriage didn’t work out. Having a chronically sick child does that more often than not. But, we have to trudge on. And she does that better than anyone I’ve ever met. She’s definitely on my “most admired” list, because I’m not sure how I’d handle what she’s going through right now.

Justin is in a lead-lined room receiving high doses of MIBG radiation. This means he’s alone. His mother can’t hold him. His mother can’t comfort him. He has to care for himself. Now, I don’t know about my other friends with children, but asking a nine-year-old to care for himself – when he is SICK – is ridiculous. My heart is breaking.

I kinda know what he’s going through. In 1993 I had thyroid cancer. After my surgeries to remove all the tumors, I was given high doses of radiation and stuck in a lead-lined room. No visitors. Everything I took in with me had to be destroyed as contaminated waste. I took in a lot of magazines and watched a lot of television. I was violently ill and in a lot of pain. But I was 25. I could take care of myself. This little boy is alone. His mother can see him but she’s totally helpless when he throws up repeatedly. She can’t wipe him off. She can’t hold him in her arms. She can’t cuddle on the bed with him. She needs that so very much, but he needs it more. To take away his right of having his mommy, well, that’s so very cruel. Unfortunately, their options are so limited at this point because his disease is becoming resistant to every other treatment currently available.

When I was released from my isolation, the hospital staff told my mother not to hug me and to keep her distance for at least a couple of days post-release. There were a lot of crazy rules that had to be followed, but my mom called bullshit. She said, “You’re releasing my daughter after a week of isolation and I’m not supposed to hug her? Are you crazy?” Then she ran to me as I was still in my hospital gown (I had no clothes with me because they would have had to have been destroyed as contaminated waste) and hugged me like never before. Everyone needs their mommy when they’re sick. Even when they’re 25.

So, Lori, only a couple of days to go, my friend. I cannot imagine the torture you’re experiencing and how tight you’re going to hug him when he can finally come into your arms. I mean, what’s a little residual radiation, right? You already glow with love for your sweet Justin, a little radiation will make you glow that much brighter. 🙂

I’m here. We’re here. We all want Justin to be completely healed and for you to get to hold him for the rest of your lives. My heart hurts so much for you both right now. I know you’re tired. I know Justin is tired. But I’m praying this therapy is the answer you so greatly deserve.

 

Bobcat

Don’t get too excited, friends. This post is NOT Jail: Part II. It’s coming soon, just not today. Patience, dear friends. It’s been a busy week and I haven’t had time to write due to all the fun we’ve been having.

Last weekend the kids and I headed to Summit County to ski. Our good friend, Miguel, set us up with passes at Keystone so we skied there one day and then A-Basin the next day. Ben – having a week of private lessons in Aspen last month – amazed me with his skiing abilities. Madeline – after having one lesson a couple of weeks ago – did awesome! By the second day of skiing she was heading down blues without issue. Well, one epic wipeout, but she made the most out of it. And, I survived two ski outings without incurring a second concussion.

Then on Monday we headed to Estes Park to spend the night at the famous Stanley Hotel. This was at Madeline’s request (she loves creepy stuff) so we invited her BFF, Tayti, to tag along. Ben wasn’t too terribly excited (he does NOT love creepy stuff), but he ended up being the only one who slept through the entire night. I have to say that it WAS creepy. I’m glad we had the experience, though.

Wednesday was Madeline’s 9th birthday. I can’t believe my sweet little girl is nine! We made cupcakes and went to the movies… we had fun. The rest of the week was rounded out with a trip to the zoo and her birthday party with nine of her best friends. Matt set up the basement at his house like a dance club – including a fog machine and disco lights. The girls had a lot of fun. And, for the first time ever, there wasn’t a crumb of cake left over.

So, party week/spring break is officially over and it’s back to school tomorrow. As I was writing in my diary as to what I need to get done in the next week, I noticed that today is the 10 year anniversary of the death of my cat, Bob. I know I’ve said that I don’t normally do the whole anniversary thing, but with Bob, it’s different. Over the last few years I’ve turned from a cat person to a dog person, mostly because most of our cats have turned into coyote snacks or have bitten me, so I’ve turned my affections to dogs. Granted, my dogs are the size of a small cat, so I still enjoy some cat-like qualities, but I have to say that I’ve never, ever had a pet quite like my Bobcat.

I got him in 1997. I had been living in Summit County, Colorado but had recently – and unexpectedly – experienced a broken engagement. This event occurred just days before our planned wedding date. Not knowing what else to do, I ran home to Ohio. As most of my readers know, I went on my Hawaiian honeymoon without my groom. Once I returned from that trip, I decided that I’d remain in Ohio. The Colorado community just wasn’t big enough for the two of us. My broken heart wouldn’t let me stay.

Shortly after moving home my Aunt in Pennsylvania called to say that she had a barn full of new kittens. This wasn’t new for her, she always had a new crop of cats every spring. These cats weren’t pets, per se, they just lived in the barn and came and went as they pleased. But one cat in particular caught the special attention of my Aunt. He was born with some developmental issues and my Aunt was afraid that this kitty wouldn’t survive. I knew it was my purpose to go rescue this cat.

I immediately jumped in my dad’s car (mine was still in Colorado) to drive the four hours to Pennsylvania. Upon my arrival, I noticed this teeny-weeny kitten hiding in the corner. I knew he was the one. He appeared to be the runt of the litter and he was missing a tail. Some cats are bred specifically for this trait, but for this kitty it was a birth defect. I was in love. I could see the diamond through the long, matted fur and goopy eyes. Maybe it was due to my compassionate, social worker-esque nature, or perhaps I’m simply just a sucker. But I would have no issue loving this mangy, no-tailed cat. I gingerly scooped him up and drove him home.  Somewhere in West Virginia, I decided to call him Bob.

The vet clucked her tongue at my new kitten’s condition. She determined that in addition to his being full of worms and needing a drastic haircut, that his tail would cause long-term issues for him health-wise. His nerves did not extend down through his tail like a normal cat. His nerves stopped at the middle of his back. She said he would live without issue for a while but not to expect him to be a long-term kitty. I didn’t care. He needed me and I needed him.

During those first few months post-breakup I would wake up crying in the middle of the night. Bob would be standing over me, staring at me, as if to say “I’m here.” It was so endearing. Or, perhaps, he was just pissed that I woke him up yet again. Who knows? Anyway, over the next few years, he moved several times with me. We moved back to Colorado and, eventually, back to Ohio. On our car trips he always sat between the headrest and the back of my neck. He loved to look out the window as I drove and I loved feeling his silky fur against my skin. He was my bestest good buddy.

Eventually, the nerve damage caused too many issues with his ability to have a bowel movement. It had always been a struggle for him but, with time, it got to where he couldn’t go at all. After doing all I could for him, I knew what had to be done. I held him in my arms and sang to him as the vet administered the pentobarbital to put him to sleep. He closed his eyes and died peacefully. My heart broke all over again.

I had my Bobcat for six wonderful years. So many changes happened for me during Bob’s life-span and he saw me through every single one of them. He always seemed to know when I needed extra love.

I can’t believe it’s been 10 years since I last held him. Sometimes I feel like his short life prepared me for what I was about to endure with Benjamin. That may sound silly, but for the years before I had children, Bobcat was my child. I was determined to care for him. To help make him well. To prolong his life. To love him fiercely. It was like my “trial-run” at being a parent to a special needs kid. I can’t truly compare the two, of course, but I think it gave me a little emotional preparation of what was coming.

Thanks for our time together, Bobcat. You were the best cat ever and I sure do miss you.