Category: Uncategorized

I understand that my website is giving some people the warning that it has “malware”. I’m looking into that and working on getting it fixed as soon as possible. I apologize for any inconvenience or if your computer unexpectedly blew up when all you were trying to do was get a dose of Sarah.

I’ve been writing a lot in my head lately but none of it has been making it to print. There’s been so much going on that I can barely keep up with it all. Don’t worry, it will all come out eventually, but for now it’s living in my cranial cavity with the stock-boy I’ve lovingly named “Steve”.

I’ve often said that my brain does its own thing – that we merely co-exist – and over the years I’ve come to accept the fact that I have no control over how my brain works. I’ve lived with this knowledge for a long time and was fine with it – up until just recently. I had to give it a name. That’s where Steve came into play.  See, Steve lives in my head. He “rents the space” if you will. I guess it’s more like a co-op. He not only works there, but he partially owns it, too. So, whenever I’m out of ideas, Steve stocks it with something new. If something gets knocked off the shelf, Steve picks it up. If it appears to be too cluttered, well, honestly, Steve doesn’t do a damn thing about that. He just kicks back in his hammock and takes a nap. I’ve considered firing Steve over this but I’m not quite sure if I’ll find anyone else who will apply to be my brain manager. It’s a tough job and the benefits suck. Since Steve hasn’t filed any grievances over his position, it looks like Steve is here to stay. Honestly, I need him. I cannot manage my life AND my brain. Something has to give.

Okay, Steve. You’ve hogged enough blog space. Back off.

Yesterday was a super poopy day. It came after a day of GREAT news – the news that Ben remains to be CANCER FREE (YAY!). So, in the delicate balance of the world known as yin and yang, there had to be some baloney to even out the YAY factor and yesterday was quite a dump. First, I got my feelings hurt. Now, this would have been tolerable but it just happened to be the start of a shit-ball that rolled into gigantic proportions. I’ll spare you the details of just HOW my feelings got hurt but know that it knocked me on my butt and held me down until the next bit came, which happened to be the news of a little friend relapsing.

Dammit.

I hate this sort of news. My friend reached out to ask how I delivered the news of Ben’s relapse to him. Just thinking of this time-warped me back to how I held him on my lap as I told him the devastating news that the beast had returned. The tears. The fear. The unknown of what my friend and her daughter are facing is heartbreaking. And trying to encourage her to be cautiously optimistic. To have HOPE.

Hope is tricky. We’re supposed to have this unending supply of Hope. It’s supposed to come to the rescue and banish all yucky thoughts into oblivion. Hey! We can overcome this obstacle! We have HOPE! Can that ant really move that rubber tree plant all by himself? YES! He has High HOPES (please refer to the song “High Hopes” made famous by Frank Sinatra and Shirley Feeny from Lavern and Shirley). Supposedly, our determination takes over and we can overcome ridiculous feats all due to the beauty of HOPE. Honestly, I’m having trouble with Hope. I want to state why, but then this post would turn into a missive proportional to the epic War and Peace. And ain’t nobody got time for that.

It’s what I get for not writing regularly. My brain is swirling with activity and up until recently I could feel Steve scrambling to make right of the chaos. No, wait. I feel that swinging sensation of a hammock rocking back and forth. Dag nabbit, STEVE! I’m docking your pay.

Seriously, though, yesterday was heartbreaking. On top of everything else, a very sweet woman died yesterday. Her name was Kelly. She was a dear friend of my sister, Cassi. They were buddies in high school and Kelly would often come over to our house. I was enamored with her. She was so funny and seemed to embody joy. Her laugh was infectious. I would sit outside of my sister’s room listening to them chatting with each other about high school stuff. Being six-and-a-half years younger than they, I found it to be quite fascinating banter. Kelly was sweet. Her heart was bigger than Texas. She came and sat with my sister and me at the hospital the day our mother passed away. Her genuine tears mourning the passing of a sweet childhood memory. I felt like I was 10 again whenever I was in her presence. I sincerely enjoyed her. The last thing she posted about on her facebook page was something to do with how crazy the show “Toddlers and Tiaras” was. The last thing I ever wrote to her was a couple of weeks ago. I told her that she was my hero and that I had my very own pair of “Kelly Underoos”. Her reply back to me was “I love that!”.

Kelly had been sick for quite a long time. Doctors couldn’t find what was truly wrong with her. She had been treated for multiple heart issues but with no relief. I think – and Steve concurs – that maybe her heart was simply just too big for this world.

My sister told me yesterday that Kelly was afraid she was going to die alone. Unfortunately, this is what happened. A friend went to pick her up yesterday for a doctor’s appointment. When Kelly didn’t answer her door, her friend gained access from the landlord and found Kelly dead on her bed. Her earthly life over. The pain now ceased. A beautiful light in this world extinguished.

But she was alone. And lonely is a word that has been sneaking around my life over the past few months. While I PROMISE I will divulge more about this as soon as Steve permits, I can state briefly that the changes I’ve experienced this past year have left me very lonely. I’ve realized that relationships that are critical to me haven’t been taken seriously. I haven’t fully appreciated them. I’ve had my head so far up my own ass and wallowing in the doldrums of “how can this be happening?” that I haven’t stopped to appreciate everyone who has so lovingly been there for me throughout all of my turmoil. I’m sorry for that.

I’m sorry for a lot. I’m sorry for hurting those I do truly love. I’m sorry for hurting those I don’t really know. I’m sorry for not furthering relationships with my family after losing my mother. I’m sorry that I’ve been so consumed with my lack of Hope that I’ve failed to see all the beautiful things in my life. I’m sorry for not giving Steve more free time to enjoy the wonderful world that is my brain. I’ve been keeping him too busy and overworking him with the pain and strife and fear I’ve allowed to sneak in to every crevice I have.

I’ve forgotten who I am and have allowed the events in my life to carve me into something else. Instead of taking the events that have occurred and allowed them to ADD to who I am, I’ve allowed them to take over. I’ve shrunken like a cold, wet puppy that can’t find its’ way home and allowed life to alter negatively instead of grabbing it by the beautiful horns and letting ‘er rip.

But no more. I fully understand what’s important and there my focus shall lie. And, with Steve’s help, we’ll find our lost Hope.

Rest well, my dear Kelly. I got your message.

Just heard that Ben is still HAMA positive. The treatment team in NYC met yesterday to discuss what to do next but we don’t know what the plan is yet.

It’s also time for scans… so hopefully we’ll be able to get that scheduled here in Denver since there’s no foreseeable trip to NYC coming up.

It’s all up in the air. Will keep you posted.

You wouldn’t BELIEVE what’s been going on here. Unfortunately, I cannot share it with you… yet! But be warned. It’s gonna blow your socks off. Or make you nauseous. Or make you laugh ’til you pee your pants. Trust me, something will happen to you on an emotional/physical level. I guarantee it. 🙂

I can, however, share with you some news about Ben. He is still HAMA positive, which means that we have not made any new trips to NYC since August. His oncologist has stated that he’s feeling positive about the fact that Ben has received nine rounds of antibody therapy. He thinks that waiting to see if Ben’s HAMA comes down on its own is no cause for alarm. Waiting for anything in the world of cancer is usually a bad idea since cancer – especially neuroblastoma – can usually find something nefarious to do when given any amount of idle time.

We’ll know more about Ben’s HAMA and next steps in treatment this coming Wednesday.

Other updates: Kids are taking karate, PopPop came for a visit over fall break, Ben has gained a few more pounds (yay!), and both are doing well in school (Madeline is a spelling dynamo and Ben reads like a maniac!).

I can’t say that things are perfect around here but we’re making adjustments and learning to get through each day.

I promise to write more soon. Stay tuned.

Soft serve ice cream reminds me of Kirkersville, Ohio, which is my hometown. Kirkersville is a wee-bitty village with a population of about 700 (this number does NOT include cows). Everybody knew everyone AND their business. I was only a mild troublemaker so my name wasn’t in the rumor mill all that often. I did, however, work at the center of town where all the action happened. Kirkersville had but one stop light and it was considered the epicenter of the whole village. On one corner you had the Apostolic Church. The corner directly across the street held the local tavern. Following clockwise, the next corner held the post office as well as the carry-out. This was my favorite corner because you could get all the penny-candy you could carry and it truly was a penny apiece. The last corner held my first true place of employment, The Kirk Kone. Unfortunately, by the time I was old enough to work there, it was called “Aunt Mary’s Cafe and Cone”. I could never make the transition of calling it anything other than the Kirk Kone, even though the incorrect spelling of “Cone” annoyed me beyond belief. It was the hub of all the town’s excitement. That’s saying a lot considering there was a tavern caddy corner from the ice cream joint.
We had soft-serve ice cream, every flavor of sundae you could imagine, milkshakes, dip cones, sprinkles, and even a smattering of sandwiches like pulled pork and pizza burgers. It was fine dining by Kirkersville standards.
I understand that Kirkersville no longer has the Kirk Kone. The building now houses a bingo hall or something like that. The other corners still have their staples, but the ice cream place is long gone. It makes me a little sad. But change is inevitable. There’s no changing that.
I bought Ben a $3 soft-serve ice cream cone from the Mister Softee truck in Midtown Manhattan the other day (what is it about soft-serve ice cream that commands people to misspell?). He devoured it before we got to Nintendo World, which was just a block or two away. Usually, he loses interest in all things food about 1/2 way into them – even ice cream. However, this particular cone didn’t even get a chance to melt. Ben has actually been doing well with eating this trip. He’s gained about two pounds and has grown about one centimeter since our visit in June. I know, that’s not a lot by most standards, but in Ben’s world it’s monumental.
So. The scoop on Ben’s treatment. We’ve had some interesting news this week. Ben reached HAMA. I’ll try to explain without getting too technical. HAMA stands for “Human Antibody Mouse Antibody”. The antibodies that Ben has been receiving is derived from a mouse. I know. Crazy. Anyway, the mouse antibodies are supposed to teach Ben’s system how to fight any recurring Neuroblastoma. We want Ben to receive as much of this as he possibly can. The average length of this treatment is approximately two years. Ben has made it about 1/2 way through at this point. We need to make an adjustment in his treatment to bring his HAMA down to a level where his body will accept more of these antibodies. The more he has, the more able he’ll be to fight off any cancer that’s trying to return. So, we either just wait for HAMA to come down on its own or we do more chemo. It’s a low dose of chemo so he shouldn’t lose his hair or get too terribly sick, but it’s still a minor setback. Everything had truly been sailing along at a beautiful pace and now this. It’s not uncommon for this to happen to kids – sometimes it happens more than one time – but it’s still a pain in the butt.
Even though Ben has reached HAMA, he’s still going to finish out the week of therapy. As of today, he has one more session to go. The pain has been minimal this time around (another indicator of HAMA). He’s actually up and playing his Wii right now so I’m hoping we can get out and enjoy this evening.
Maybe we’ll go out and get some ice cream.

I’m watching my sweet little boy as he tries really hard to choke down some lunch. I think Ben believes – after taking medication and participating in any sort of cancer treatment, of course – that eating is pure torture. He keeps looking over at me to see if I’m still watching so he can take a break without me “encouraging” him to take another bite. Poor kid. I can’t even use the usual guilt trips. When I mention that there are children in Africa who are starving and would gladly eat that food he says he’s more than willing to ship it to them. And besides, he has cancer. Doesn’t that cut him some slack?

I hate to see him struggling so much with eating before he does a week of treatment. The week of antibody therapy is so hard on him and eating falls way down on his list of priorities. On top of the pain, there’s his “pain-in-the-butt” mom harping on him to eat something. I’m sure he wants to poke my eyes out.

Oh, I’m not all that bad. After all, I just spent all day yesterday frolicking in the ocean with my son. I’m so NOT a beach girl. I don’t love the sand. I don’t love the salty ocean. I don’t love what lurks beneath the murky water. Plus, Shark Week has just occurred AND that shark movie recently came out… too many reminders of what is out there waiting for me to kick my legs. But I ignored my fears and took Ben out to ride the waves.

It ended up being a beautiful day. Several families staying at The Ronald got the opportunity to travel to the Jersey Shore to spend the day with a very generous benefactor and his family. Apparently, this family hosts several dates over the summer so the kids can get away and enjoy a day at the beach. The family provides food, boogie boards, umbrellas and chairs for the kiddos to enjoy.

I think all the kiddos had a blast playing in the waves and enjoying some sunshine. I know I had a great time watching the kiddos enjoying themselves.

A precious moment of normalcy in their tumultuous world of cancer.

I’m sitting at the Ronald McDonald House in NYC watching the rain hit the window of our room. The drops hit with great forcefulness and then slide down gently until they land God knows where. It reminds me of “old school” cartoons where the antagonist is chasing the protagonist, hits something hard – like a wall or an anvil – and then slowly slides down like the bellows of an accordion. I know, I know… my mental illness is showing. 🙂

I am generally soothed by the rain but, unfortunately, there is no calming effect with this particular storm. What do I have to be stressed about, you might ask? Oh, only the fact that the next few days are filled with tests to ensure that Ben’s cancer hasn’t returned. And after scans, there’s a whole week of horrible, awful, ridiculously painful antibody therapy. Ben is stressed, too, so we’re geeking out on our respective electronic devices to pass the time.

We just arrived in NYC today. I didn’t sleep very well last night so I’m thinking (hoping) we’ll crash early. Ben requested pizza for dinner so I ordered online and walked in the rain to pick it up. Upon my return, I was smacked with a reminder that we’ve lost several little friends since I was last here just a couple of months ago. I fought back the tears of knowing these sweet little children wouldn’t be eating in the communal dining area or running up and down the halls or playing in the newly remodeled playroom. Their parents will never kiss their sweet faces again. Or hold their precious hand. Or smooth what hair they might have left. The parents are left – depending on what they believe comes after this life – with the understanding that they are no longer the one comforting their child. The precious life they watched come into this world has drifted out.

And if that wasn’t enough, there’s more loss to it than losing their child. Now the family has to move on. A few of the families were living here at the Ronald McDonald House permanently. One family had sold their house in Florida to live here in NYC – all to care for their cancer-stricken child. Now that their child is gone they are faced with finding alternative housing. They lose their day-to-day support system of hospital staff, RMH families and their children… it’s such a tremendous loss. I feel completely helpless.

Because you WANT to celebrate that your child is doing well. That your child’s therapy seems to be working. And there’s that bit of guilt revolving around the fact that their child didn’t have the same outcome. This is a tough group to belong to. We love each other fiercely. We become each other’s family. We cry despondently when one of the kiddos succumbs. And lately, there’s been too many who have died.

So, I’m sitting here, watching the rain and mourning the children who have recently left this earth. I hope they are somewhere wonderful, watching over their loved ones and knowing that they were severely loved during their all-too-brief time on this planet. And that this sort of love will never succumb to anything like cancer. This love is strong and beautiful.

Just like they were.

The worms crawl in, the worms crawl out. The worms play pinochle on your snout.

I know, gross. But so are gummi worms. Invented in 1981 (about 60 years later than the gummi bear) the gummi worm has enjoyed 30 years of creepy, slimy success with children the world over. These days you can get just about anything in gummi form but I think the worm wins for being the yuckiest. Don’t get me wrong, I won’t turn anything gummi away. I’ll eat that worm without issue.

I’m a very picky eater. When I was a youngster I would not eat any food that had touched its neighbor. I would carefully divide my food into its own zip code and there it must stay until it was consumed. I would eat all of one item first, then the next, and so on, until I was finished. It would take me hours to eat. And I liked minimal. My food choices consisted of tomatoes, cabbage, potatoes (with the exception of mashed… ewww) and spaghetti. I deeply disliked the texture of meat but would have the occasional hamburger (I didn’t have a cheeseburger until I was around nine years old) but most other meats were out of the question. We rarely had chicken at our house, so I didn’t actually eat chicken until I was in college. Sure, I’d had chicken soup before, but I ate around the chicken chunks.

I learned around the age of 25 that mustard wasn’t disgusting. That same year I learned that shrimp was quite tasty. Each year of my early adulthood I would try a few new things – not TOO adventurous, mind you – but I’d try to expand my horizons here and there.

There are still some foods that I will not touch. I hate fish. All fish. I cannot get past the smell. The simple sight of a can of tuna makes me gag. And sushi? Fuhgeddaboudit. I know, I’m high maintenance. The most adventurous I’ve ever been is having a coney dog at Phillips’ Coney Island near the scary part of Columbus. Scary food in a scary part of town makes for one great adventure! I’m just kidding. The food is delicious, but you do need a shock from the old defibrillator once you’re done eating there. Just walking into that place makes the arteries harden.

So, for the adventurous eaters out there, cheers. You can keep on with your sushi, Rocky Mountain Oysters, shrimp heads, sweetbreads, cow tongue, head cheese, goldfish, and whatever other disgusting foods you can come up with.

I’ll stick to gummi worms.

My cousin, David, and I are twins. Kinda. His birthday is July 8, 1968 and mine is July 9, 1968. He was born close to midnight and I was born right after midnight. However, you might be surprised to learn that I am technically older than he is because I was born at 12:24 am in Fayetteville, NC and he was born at 11-something-ish pm somewhere in Montana. The two hour time difference between Eastern and Mountain time zones makes me a wee bit older than David. I’ve always been fascinated by this fact and have to admit it was something that we would often debate whenever we would get together. When we were kids our argument might have sounded something like this:

David: I’m older.
Sarah: No, I’m older.
David: But my birthday is a day earlier than yours.
Sarah: But I was actually born first.
And so the fight continued….
Now that I’m nearing my mid-40’s, I’m completely fine with David being older than me. I’ll be younger! No problem.

In addition to my cousin being born on July 8th, my grandfather and brother were also born on the same date. Different years, of course. I’m the odd man out with my birthday on the 9th but I don’t mind because I kinda like having the day all to myself. I don’t like to share. 😛 Call me spoiled.

Yes, the second week of July was always a cause for celebration.
However, two years ago, the date of July 8th took on a whole different meaning. It was no longer just a day of multiple celebrations. It became something much more sinister.

It brought news that shattered our world. We learned on July 8th, 2009, that my beautiful son had a suspicious mass growing behind his heart.

We were four years past Ben’s last chemotherapy. We were getting ready to celebrate Ben moving to annual scans. He was going to be eligible to be a part of the “Hope Clinic” within one more year. Being a part of the Hope Clinic meant that he had five years of being cancer-free under his belt. Cancer made sure he didn’t get that chance.

On July 9th, 2009 – my birthday – Ben had emergency surgery to biopsy the mass that had invaded his body. We learned on July 13 that it was, indeed, recurrent Neuroblastoma.

Dammit.

It feels like it was a million years ago but, then again, it feels just like yesterday. I don’t know where the time has gone. Here I am getting ready to celebrate yet another birthday and I’m just not quite sure when it was that I got to be middle aged. Just yesterday I was turning 10 and going to see “Grease” with my best girlfreinds. Now I have a 10-year-old of my own who has battled – and slayed – the dragon named Neuroblastoma. Twice.

I want this date to go back to being a reminder of birthdays. Of LIFE. And I love the idea of going back to a simpler time when I argued with David as to who was older. If only my “problems” could be as innocent now as they were then.

And, oh, how I wish Ben’s “problems” had the opportunity to be anything other than life-threatening. He’s been robbed of the opportunity to be caught up in the ridiculous joy of childhood. He doesn’t get to worry about the trivial. He’s challenged on a level that many people will never understand. A level that I don’t necessarily understand how to parent. But I’m trying.

Tomorrow, it’s a fact that I’ll be another year older. Wiser? Probably. Tired? Most definitely. In awe of my incredible son? Absolutely. Ready to continue helping Ben in his fight?

Without a doubt.

I’ve been on a very long “commercial break”. I just couldn’t bring myself to write over the last three months and the best excuse I can give is that I’ve been completely overwhelmed.

That, and I had myself a major nervous breakdown.

Yes, my friends, I cracked. Wide open. It was a culmination of many events – my mother dying, little cancer-kiddos dying, major heartbreak, Ben’s ongoing health issues and issues in his school life – the list goes on. And on. And on.

I guess I just didn’t have the heart to post anything on “Stronger Than I Look”, because, well, I looked and felt like H-E-double-hockey-sticks. I was not strong in any capacity. So, I checked myself into a mental facility due to having a strong desire to end it all.

I must let you know that I would NEVER take my own life. I would never abandon Ben and Madeline in that manner. I’ve experienced a suicide in my immediate family and I know first hand how the aftermath rips the survivors to shreds. I would never do that to my children. But I couldn’t stop the thoughts of wanting to die from entering my head.

So, off to the hospital I went. When celebrities crack and go to the hospital, they call it “exhaustion”. I guess that could aptly describe the emotional chaos I was feeling, but I imagine that my time in lock-up was a lot less glamorous than what the famous people get. Their time in the looney bin might consist of valium and massages. My day was filled with meds, a carbohydrate-laden breakfast, group therapy, more meds, a carbohydrate-laden lunch, more group therapy, individual therapy, lots of questions, more meds, quiet time (which I used to sleep off the meds), a carbohydrate-laden dinner and then lights out. I’m grateful for only spending two days in the joint because I can only imagine the potential for weight gain from the carbohydrate-laden food choices would further exacerbate my depression.

Oh yeah, that’s my formal diagnosis: Major depressive disorder. Duh.

So, after 48 hours of being inpatient, I was released. The condition of my release was that I would attend the hospital’s “Intensive Outpatient Program”, or what I’ve come to lovingly call “Crazy School”. I’m quite a fan of this program. I – along with a dozen or so other crazy people – sit each day through three hours of things like cognitive behavioral therapy and ways to be mindful when we’re having our crazy automatic thoughts. It’s been very eye opening and quite liberating. I think that instead of learning about ancient world history and calculus in high school, we should be given these basic – yet often overlooked – life skills. It takes some practice, but I’m on my way to eradicating my crazy tendencies. Don’t worry, nothing will ever take ALL of my crazy away… I do believe it’s part of my underlying charm. But getting rid of the overflow of crazy and learning to deal with my depression has been such a relief.

I’ve been going to Crazy School since the end of April. I went solidly for several weeks and then began to taper off over the last couple of weeks. I formally graduate this coming Monday. This is a big week for me, seeing how I turn 43 on Saturday and then graduate from Crazy School on Monday. I should have a party or something.

I actually feel better than I have in a long time. Years, really. While going to Crazy School wasn’t on my bucket list of things to do in my lifetime, I’m sure glad I got the opportunity to take a good look at myself and lovingly accept who I am, flaws and all.

I could hear the girls giggling in the hallway, trying so hard to be quiet like I had asked them to be at least three times. A smile spread across my face as I heard them whispering to each other – communicating as only little girls know how to do. Knowing that within a matter of seconds I would be sticking my head out into the hallway again to remind them to be quiet. That other children nearby needed their rest.

Two little girls playing together. Trading secrets with each other. Giggling about boys and butterflies and whatever else strikes their fancy. Normal things. From my vantage point behind the door, one would believe all was well. These girls were not out of the ordinary. With only the sense of hearing, one could easily recognize the sound of young feet running up and down the hallway or when the audible threshold was in danger of being thrown over for a fit of hysterical laughter.

It’s a good day for her. Not my kiddo, the other one. Without any other senses you couldn’t see that she was bald. That there was a chunk of her skull missing. That she had tubes leading to an area in her chest. That she carried a bag full of medicine to hopefully make her well.

That her giggling days are few and far between.

Usually, she sits in a wheelchair. The pain in her feet makes it unbearable to put any pressure on them. Her complexion sallow thanks to all the chemotherapy coursing through her veins. A yellow bucket sitting in her lap just in case she got sick. She nearly always gets sick.

Yes. Today was a blessed day. I’m so glad my daughter got to play with her – afford her a little levity during her tumultuous storm of therapy. Run up and down the halls with her and giggle until they got out of control. I tried hard to make my voice sound stern enough to get them to settle down but have to admit that my heart soared when they were in the full throes of a giggle fit.

I hope she doesn’t fade away into the shadows. I hope we don’t lose her like we’ve lost so many others. I hope that someday her everyday can be full of kittens and rainbows and boys… and whatever else strikes her fancy.