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Happy Birthday, Stronger Than I Look! You’re a year old now. You’ve reached all those milestones of rolling over, sitting up, eating cereal, sleeping through the night, crawling, and now you’re even walking. You’ve come so far but there’s still a long journey ahead of you. A whole life to be lived. Keep growing, little baby. You can do it.

I realize that I’ve posted just 1/3 of the last 12 months and missed many National Holidays along the way. I’ve decided that my blog will continue to celebrate National Holidays and how they apply to my life, since, oddly enough, they almost always do. Plus, I missed National Tap Dancing Day in May and you know I can’t miss posting on THAT particular holiday. Going forward, if I happen to post on a holiday that I’ve already discussed, well, I’ll reevaluate and see if anything else applies. Maybe something’s changed. Or maybe I’ll just find out what the word of the day is and see if I can use it in a sentence.

Regardless, I’m going to keep writing since I’ve got so much to say. I can’t keep it in because it drives me insane. Writing is my outlet. And if I don’t “say it, I’ll spray it”. Man. I haven’t used that childhood phrase for a long time. But it’s fitting here. Not writing about life will sit in me like the contents of a bottle of Coke that’s been shaken. Pop the top and KA-BOOOM! I’m sure you’d rather not have the contents of my life hit you in the eye and drench you with the high fructose corn syrup that embodies me.

So, I’ll keep up appearances that I’m Stronger Than I Look. I’m invincible, right?

Hardly. Today, I am exactly as strong as I look. I’m sitting here in the Ronald McDonald House in New York City at 1:27 PM on a Saturday. I’m still in bed, my Colorado Avalanche night shirt looking a little worse for wear. My hair is pulled back in a messy bun. Yesterday’s small bit of eye makeup still adorning my eyes, although it did slide down my face a bit. I’m a wreck.

Ben is playing Super Mario Galaxy 2 and excited about a two day break from the hospital. I’m letting him decide what he wants to do instead of having events planned for him – no required trip to a museum or National landmark – so he’s planning to go to the pet store on Lexington (he wants a small dog so very badly) and go see a movie (either Marmaduke or The Karate Kid). A low-key day is just fine with me.

I have to admit that I’m starting to enjoy New York City (Rhonda, you can say “I told you so” again!). I like knowing where things are. Dylan’s Candy Bar is on 3rd and 60th. Serendipity is just down the street from Dylan’s on 60th. Ben gets his Chicken McNugget fix on 1st Ave and 69th. Nintendo World is at 10 Rockefeller Plaza, just off 48th. I buy Madeline a supply of earrings on Lex and 64th and mail her a package every couple of days, so she knows we’re thinking of her while we’re here in NYC. The pet store we go to nearly every day is on Lexington, between 61st and 62nd. This place is the highlight of Ben’s day.

The pet store employees know Ben and are always excited to see him come through the door. They call out “BEN!” like he’s Norm from “Cheers”. They give him the option of picking out any dog he’d like to play with and we take it upstairs to one of the little play rooms. Lately, he’s been picking out a little Pomeranian he’s named “Princess”. She’s a wonderful puppy. She is very playful and Ben is hopeful that he can take her home when we leave NYC this time. Without bursting his bubble completely, I try to encourage him to just visit with her and enjoy the time we do have together. Don’t make too many plans. Take each day for what it is. I’m kinda tired of living life that way. I’m desperate to make plans. Solid, concrete plans. All the while, completely understanding that even solid, concrete plans change – even for those with a “normal life”.

I’m tired of not having a plan. Or having a plan that changes all the time. For instance, just when we felt like we finally had this radiation hooey all figured out (how many cycles, how many times a day…) our oncologist throws in a bonus round of chemo in conjunction with the radiation. Really? Thanks! That really made our day.

I haven’t written since arriving in NYC because the plan has changed at a rate that spins my head. We keep purchasing one-way tickets between Denver and NYC because we never know the plan or how long we’ll be here. As it stands currently, we’re here through June 25 to finish his 20 cycles of radiation (10 days, two sessions each day) and complete the necessary scans to “plan” what’s next. What I’m hoping will come next is finally getting started on this antibody therapy. Supposing this radiation does what it’s supposed to, we’ll leave here on June 26, start shots in Denver on June 30, and be back in NYC to start antibody therapy on July 5, which will go through July 9th. Then, maybe, just maybe, we’ll have a more predictable schedule.

If this plan doesn’t work out then I don’t even want to contemplate what will come next. If this next phase doesn’t happen that means that the radiation didn’t do what it was supposed to. That means that Ben isn’t clear of disease. That means that he might not be curable after all. That means that a life that is already fraught with emotional terrorism will escalate from Orange to Red (according to the color-coded chart compliments of Homeland Security).

But I’m not supposed to go there, right? Okay. I won’t.

One way that I’ve been able to work out my worries while in NYC is through walking. I walk everywhere. I borrow a wheelchair from The Ronald or from the hospital and I push Ben all over the city. It’s an exercise in dedication to find the perfect wheelchair for Ben. It has to be roomy enough for him to lay in the fetal position when he gets tired, there cannot be an IV pole attached to the back, the wheels must be properly aligned (or I’ll be stuck with what can only be described as a reject cart from WalMart). And it can’t have any gadgets or gizmos on the back that will interfere with walking. Yesterday, I maimed my toe on the metal gizmo that allows me to pop a wheelie over the curbs instead of dumping Ben out on the street. The injury I sustained yesterday hurt tremendously. I wanted to sit down and cry, but Ben was asleep in the chair and we were in the middle of Times Square. It was fairly crowded so I had nowhere to truly sit down to have my little pity party. I’ve decided though that I missed a grand opportunity to make some money. If only I had a cup, people might have felt bad for “The Crying Woman Who Was Bleeding And Had A Sleeping Kid With Cancer In A Wheelchair”. Passers-by might have thrown a dollar or two our way. Hey. It’s New York City. It could happen. Instead, I continued to walk to Central Park and up 5th Avenue leaving a tiny trail of blood. It was on my jaunt across 72nd street that I witnessed a pedestrian get hit by a taxi cab. He was thrown off his feet and out of the crosswalk. I heard his muffled cry from just a few steps behind me only to turn and see him flying through the air. The man was able to get up shortly thereafter. Fortunately, my autopilot kept making me walk until I had pushed Ben to the other side of the road. I stayed until I heard sirens and then walked the rest of the way back to The Ronald. Shaken. In need of a change of underwear.

So now I can add to my Times Square sign. “Crying Woman Who Is Bleeding And Has A Sleeping Kid With Cancer In A Wheelchair. Witnessed A Pedestrian Get Hit By A Taxi. Need Money. And Fresh Undies.”

Oh, this trip hasn’t been all bad. Sure, we’ve been shocked with additional chemo. Maimed by a wheelchair. Witnessed a man lose a match with a taxi cab. That’s some craziness right there. But we also got to participate in a dedication here at the Ronald McDonald House. Ben read a poem to the guests. I spoke about how great The Ronald has been to us. They gave us a box of butterflies to release, but since it was raining, we brought them back to our room to release the next day. Well, Ben decided to release them in our room that evening. Two days later I am still shooing butterflies out of our room through the teeny tiny crack of our seventh floor window. I’m guessing that The Ronald has had a suicide attempt or two since opening their doors here in NYC because you cannot open the windows more than an inch. Guess those of us who are on edge will have to take the subway down to the Brooklyn Bridge to end our sorrows.

Or cross at 72nd and Madison.

Thanks, loyal readers. I cannot thank you enough for walking with me through this nonsense.

Old Maid’s Day came about after the end of World War II when many women were waiting for their GI’s to return from the war. Some women waited a long time. And, of course, some GI’s never came home. It left a lot of lonely ladies.

I imagine some GI’s left their sweet young girl behind only to return to an emotionally encrusted nag of a woman. This poor woman had just spent years waiting for the love of her life all the while having her bonbons rationed. The GI had it rough? Not hardly. War is nothing when compared to no chocolate or bananas or tea or milk or rubber or gasoline. And for crying out loud, no TYPEWRITERS, PAPER OR INK! Had I lived during that era, I would have fallen apart. No writing? I mean, really. There’s no doubt that I would have been an old maid.

While I admire women of that era I’m certainly glad I didn’t have to live during those years. Plus, I don’t look good in the big shoulder pads that were fashionable during the 40’s. Luckily, I got to skip over that section of the 80’s when they came back in style. I opted for skinny jeans and Duran Duran boots instead of big shoulders. A better choice? No. But what were the options?

While my high school years may have been a bit dry in the boy department (I blame poor choices in hairstyles) I’ve more than made up for it in my adult years. The key is to go where the boys outnumber the girls. And it helps to be isolated to some degree. So the boys can’t just hop in the car and go to the next town where girls are plentiful. I suggest Summit County, Colorado (or any mountain town) and, if you’re truly desperate, McMurdo Station in Antarctica. This option is not for everyone since you have to pass a rigorous mental health exam, because once you’re there, you’re stuck. I’ve even heard that if you die at McMurdo, they stick you on ice until the thaw comes, which could be months. And, if you make a poor choice, you have nowhere to run. You’ll be stuck with that poor choice staring you down Every. Single. Day. While I’ve never had to resort to going all the way to Antarctica, I did take full advantage of Summit County back in my 20’s. But, as I’ve stated before, the odds are good, but the goods are odd. 😉 And it, too, is a small county. Your mistakes tend to haunt you in such a tiny community. I had to move back to Ohio after my divorce because I couldn’t go to the grocery store without someone asking me “Hey, Sarah! How’s ***?”. To which I would respond “Gee. I don’t know. I kinda hope he’s on fire.” But once one person knew then the whole county knew. It was worse than high school in some ways. At least I had better hair by then.

So, if you happen to be an old maid, you’ll take comfort in knowing that today is also “Hug your cat” day. And everyone knows that if you’re an old maid then the chances of you having a cat is pretty high. Evidently, I was planning from an early age to be an old maid because I’ve been captured on film hugging many a cat. See case file #OM1977:

This cat did NOT want to be hugged. In fact, I think I was shredded shortly after this photo shoot. I still have the scars to prove it.

Okay, gotta get ready for my final laser session of tattoo removal. Tattoos are like a one night stand in Antarctica. They might seem like a good idea at the time, but they never are. And the removal process is EXTREMELY painful.

Sorry. Sorry. Sorry. Sorry. Sorry. And, I repeat, sorry.

I haven’t been writing/updating lately because I just couldn’t. I can’t really call it a writer’s block because I’ve had plenty of material – perhaps too much material – and it all went rushing through my head over the course of this past month. All I could do was go with the flow. Let the river take me. Navigate the rapids when I could.

My rapids weren’t insurmountable, say, a Class VI (which is considered “unrunnable” in the world of white water rafting), they were more of  a Class IV, which can be described as “difficult to very difficult; long turbulent rapids with powerful waves and holes, and many obstacles requiring precise maneuvering”. And when I couldn’t maneuver, I just rode out the rapid, hoping I wouldn’t get caught by a strainer or pulled under water for too long.

I haven’t been on a rafting trip for about 12 years. Wait. How is that possible? I am very young and shouldn’t even be able to remember 12 years ago :). Anyway, on that last river run, I was dumped out of the raft right at a critical moment in paddling through a rapid. That had never happened to me on prior trips so it was quite a shock to be paddling one moment and then pitched into an icy cold river the next. The suddenness of it all had me reeling. I’d been through the drills of what to do when thrown into a rapid time and again, but having never had the real experience of it had me frantically recalling what I needed to do to survive. My teammates pulled me in before I got left behind and all I suffered were a couple of bruises. The bruise to my ego was particularly ouchy.

Happens to the best of us, right?

Interestingly enough, someone was standing at the river’s edge videotaping us as we went through the next stretch of white water. We got to see the video before packing up and heading home that same day. The video showed my teammates digging in with their paddles, a mix of adrenaline-soaked expressions and exhilarating shouts coming from the boat as we soared through a Class V rapid. But when the camera panned to me, the fear was evident on my face. I’d been thrown out just minutes before and here we were navigating another rapid. I was terrified of being thrown over again and it showed very clearly on my face. I was going through the motions, punching through the water with my paddle, digging in with all my might, but my expression was completely different. Where my teammates were enjoying an incredibly thrilling moment, I was scared to death. I was afraid of it happening again. A repeat. Relapse.

Relapse. I hate that word.

We’ve been through all of this with Ben before. We “made it” to the other side of therapy and enjoyed four years of Ben being in good health. We had been tossed out of our raft in 2004 but we braved the rapids and said good riddance to the Beast Named Neuroblastoma in 2005. And I wrote, multiple times, that if we could just keep Ben from relapsing we’d be in good shape. We’ve known kids who made it through initial treatment and survived long-term. We don’t know many – or any – kids who have survived recurrent neuroblastoma long-term. A repeat of this disease, well, we all could have done without that.

Four years. Four years that sneaky neuroblastoma waited before making a comeback. Repeat performance. Recurrence. Relapse. And we’re coming up on the one year anniversary of starting all of this hooey over again. My face might not show the raw fear of what my white water video showed but I know I’m exhausted. Tired. Worn out. And, unfortunately, we’re not even close to being finished with his therapy. We can’t get that stupid spot to go away so we have to do some more radiation. We were in NYC last week for simulation (he got FIVE tattoos) and we’re supposed to start therapy June 10. We’ll most likely be flying back to NYC mid-week to start therapy.

June 10 is also the day of Madeline’s first acting performance. Her Kindergarten class is putting on “The Three Piggy Opera”. And I’m going to miss it. Just like I missed her very first field day where she excelled at jumping over hurdles. And her first day of Kindergarten. And all those milestones the first year of her life because we were constantly in the hospital battling neuroblastoma. She recently told me that she believes I love Ben more than I love her. Her carefree and gregarious spirit is being crushed by this evil beast. Flipping cancer. It’s not that I’m upset that you tried to ruin our lives once, it’s that you’re trying to do it again. Your repeat performance was so unnecessary.

So, let’s talk about something much more funner than cancer (I said ‘much more funner’ on purpose despite knowing that it is hideously grammatically incorrect). During our last trip to NYC, The Ronald McDonald House held a Spring Social for the families. We got to choose formal wear and had our hair and makeup professionally done. The event was held at the New York Athletic Club. Very fancy. I picked out a beautiful yet simple black dress. Ben got a tux (set off by wearing his favorite bright green crocs). I got my makeup done, which I wasn’t exactly thrilled with, but it was a formal affair so I had to be okay with wearing more makeup than usual. I just wasn’t excited that she put blue eyeshadow on me. Ick.

Then I waited for my turn with the wonderfully flamboyant hairdresser. I thought I’d go with a simple “up do” since my hair is long enough for that now. When the hairdresser was ready, he pointed at me and said “get on my throne”. I obeyed. He leaned down, looked in my eyes, then toyed with the ends of my hair and said “this hair is heaven. I love it.”, which made me slightly delighted. He didn’t give me a choice of saying what I’d like to have done, he just did it. He said, “This calls for Rita Hayworth in “Gilda” hair.”

Ms. Hayworth had a bit more wave than my stick-straight hair. The hairdresser actually said “If I was as straight as your hair, I’d have kids.” Then, much like Edward Scissorhands attacking a shrubbery to make it into a glorious topiary, my hairdresser went to work.

He sang “Put the Blame on Mame” as he worked on my hair and told me stories about Rita Hayworth herself. My hairdresser was a very famous drag queen back in the day and very close with Rita’s daughter. He actually got to meet Ms. Hayworth, who was unfortunately in the middle stages of Alzheimer’s. He told me of the time that Ms. Hayworth threw an ashtray at him because she mistook him for Frank Sinatra. I didn’t get any back story on why Ms. Hayworth would have any beef with Mr. Sinatra but it makes for a delightfully interesting story.

As he was finishing up my hair he asked who would be doing my makeup. I told him it was already done. He crouched down to my level, forcefully turned my face from side to side, and vehemently stated, “NO! I want MORE! More eyes. More lips. More!” He made me point out my first makeup artist, clucked a “tsk-tsk”, apparently for her inability to do makeup properly. He said, “Good GOD! You’re going to a party, not a funeral. Blue eyeshadow. Who uses blue eyeshadow?” And I was terrified at the thought that this man, a former very famous drag queen, was picking up a makeup palette and loading a brush with eyeshadow that would be directed at my face.

After a mad flurry of powder, he stood back and said “There. That’s how it’s done,” loud enough for the incompetent makeup artist to hear.  Then he handed me a mirror. Opening one eye at a time, I slowly saw the waves in my hair and eyeliner and glossy lips and, wow! I was stunned. Ben had fallen asleep on the couch wearing his sweet little tux and green crocs. I woke him up gently, telling him it was time to leave for the party. He opened one eye at a time, taking in the transformation of his mother. At first, he was concerned about the hair. Then he said, “Wow. You’re beautiful.” We got up, grabbed our stuff, and headed for our limo to the party.

We had a wonderful night. Just me and my son dancing and enjoying a nice evening out on the town. Forgetting about cancer, even if it was just for a little while.

Now that’s something I wouldn’t mind repeating.

Poor lost socks. They were once twins created in a factory, hoping to be mated for life. But more often than not, one gets lost in the laundry. Or behind a dresser. Or stuffed down the toilet by a toddler. And it leaves the mate wondering if they’ll ever see their twin again. If they happen to be a plain white sock, the chances are high that they’ll be paired with another like sock that also lost their mate.

Sibling-less sock #1: “Wow. Not seeing much action these days. Just floating around this drawer and missing Bill now more than ever. Can’t say that I’m missing those tennis shoes, though. They are way past their prime. Even my soft cotton fabric can’t absorb all of that smell. But I have to admit I’m missing the sunshine and that seventh period gym class. And just when our owner finally trimmed his toenails, Bill went missing. Was it the stress? Was it the odor? Where did he go? And why didn’t he take me with him?”

Sibling-less sock #2: “Wait! No! This is not my mate! George! Where are you? Nooooo!”

Sibling-less sock #1 is paired with sibling-less sock #2 and rolled into a ball. Thrown into pile with socks of similar size.

“Sibling-less sock #1: “Hey there. I’m Steve.”

“Sibling-less sock #2: (weeping quietly) “Tom. Nice to meet you.”

Sibling-less sock #1: “Guess we’ll be in this together. Sorry for your loss.”

Sibling-less sock #2: “I’m really not ready to move on. It’s not you. I’m just really missing George.”

Sibling-less sock #1: “No worries, Tom. It’s tough to move on. But it’s even tougher being stuck in the drawer for months on end. Never seeing any action. Just waiting for someone else to lose their sib. Take your time to grieve, Tom. But know I’m here. I’m right here. And I’ll do my best to never let you go.”

Steve clings to a trembling Tom, wishing that their owner would reconsider using Downy with Febreze instead of the Target brand dryer sheets, knowing that letting go would only result in severe static shock. And who needs that when you’re both in mourning?

Yes. I know. My mental illness has reached an all-time high. But I bet when you put your next pair of socks on, you’ll wonder about what conversation they’re having.

Speaking of socks, I have laundry to do. Ben and I are getting ready to go to NYC on Wednesday for scans, tests, and a bone marrow biopsy. We’ll be there from Wednesday to Saturday, so it’s just a quick visit this time. Probably won’t do a lot of sight seeing, especially since that bone marrow biopsy will leave the Bean feeling a bit sore. I’m sure we’ll make it to the Nintendo store once or twice. 🙂

Ben is feeling so much better. His mouth is healing nicely and he’s starting to eat on his own. He’s still a skinny little man despite his being on the high-calorie TPN but at least he’s trying. We have a clinic appointment Tuesday afternoon to see if he’ll need to continue on the IV nutrition. I’m hoping that we don’t have to mess with it in NYC (it requires a lot of supplies) but if Ben needs it, of course I’ll deal with it. That’s my job. I’m sure Homeland Security will question my need for loads of hypodermic needles and the various other supplies required to nourish my son. Oh well. We’ll get to the airport early.

I woke up this morning with my kiddos on either side of me. Since it’s Mother’s Day, I couldn’t ask for anything better. They each made me a special craft – always the best gift – and since I’m not a big fan of breakfast, I got a bagel and Mtn. Dew in bed. It’s 12:40 pm and I’m STILL in bed. I’m feeling a bit guilty about that, but seeing how it’s Mother’s Day, I get to do what I want, right? Oh well.

I nearly always write while I’m still in bed, I guess that’s where my brain works best, so I’m making up stories about mismatched socks to lengthen my time snuggled beneath the covers with my kiddos. Wasting the day away. Feeling guilty that Matt is cleaning up the bathroom despite recently having sinus surgery. But I’m writing! I’m pursuing my creative outlet! I shouldn’t feel guilty, right? But I do. Hmmmm. What other stories can I make up to lengthen my time snuggled in bed?

Seriously, though. Happy Mother’s Day to all the mom’s out there. It’s a beast of a job but no way would I ever give that up. My children are my world. My light. My loves. I’m a better me because of them.

That’s worth a few extra hours snuggled up with them, right?

Today, May 8, has a variety of holidays to choose from. While you may take your pick from the following list: Birth Mother’s Day, International Migratory Bird Day, Iris Day, No Socks Day, V-E Day, and World Red Cross Day, I’m going to play “eeny-meeny-miney-mo” to figure out what I’m going to write about.

I choose Wildflower Week. The second week of May is always Wildflower Week. Wait. What? It’s the second week of May already? When did that happen? I am absolutely overwhelmed by this thought. Honestly, though, what doesn’t overwhelm me these days?

I’ve been spending a lot of my “free time” sleeping. Yesterday I took a nap before bedtime. I woke up long enough to eat, watch “The Blind Side” (which was okay), and hook Ben up to his IV nutrition. That event was an exercise in comedy… I’ll come back to that.

That last round of chemo for Ben really knocked him out and made him extremely sick. He ended up back in the hospital just three days after discharge with horrendous mucousitis. He wouldn’t eat or drink because of the pain involved with swallowing. He wouldn’t even swallow his saliva so, of course, food was completely out of the question. His tongue looked like someone took a cheese grater to it. I know, that’s a terrible image, but just think how my poor son felt.

Ben was discharged after eight long days of being inpatient. He lost four pounds, which for those of you who know him understand that he doesn’t have four pounds to give, so the docs decided to put him back on TPN. TPN is a bag of liquid nutrition that goes through his port. It’s very high in calories, which will hopefully boost Ben past the 41 pounds he’s currently carrying. Mind you, he’ll be nine years old next month. The “charts” say he should weigh an average of 61.6 pounds. That’s a 20 pound difference.  This breaks my heart.

So, anyway, Ben was on IV nutrition for nearly all 15 months of his first round of therapy since he was constantly plagued with mouth sores. I became a pro at administering his nightly nutrition. I had to do a lot of his care at home during his initial diagnosis: shots, medication, TPN – I was as close to being a nurse as I’ll ever be. So when they told us that Ben would be sent home on IV nutrition I figured all I would need is a quick refresher course on how to hook him up. Our home care supplier sent us a huge box of tubing and syringes and batteries and saline and medications… enough to fill the Jersey shoreline. The box weighed more than Ben, which I found slightly amusing. A nurse came by a couple of hours later to give me a refresher on how to hook Ben up. I followed her instructions as the memories came flooding back from 2004. She told me that I was a “rockstar” and felt confident in my abilities to connect him. I was – in a strange way – proud of myself for remembering how to do it.

The first two nights went without incident. Then, last night, I whizzed through the set up process and attached the tubing to Ben. He put on the heavy backpack containing his pump and the bag of nutrition and went downstairs to eat some ice cream. Then I heard Matt call my name. I was cleaning up the carnage left by the many components of Ben’s TPN, so I said “Just a minute”, to which Matt responded “No, NOW!”. I ran downstairs to see a slightly freaking out Ben and an exasperated Matt holding up the tubing that was filling with blood. My mind started racing “oh no, oh no, oh no… what do I do?” So I clamped his line, pulled off the tubing, and tried to retrace my steps. Matt helped me push the blood out of the line. I reconnected the tubing to the pump exactly the same way as I did before. And, for whatever reason, it was fine. Who knows why it didn’t want to work before? I guess I just needed a dose of adrenaline? All it did was exhaust me more.

I listened out for Ben’s pump all night long. I was so paranoid that I wouldn’t hear it and had nightmares of blood backing up in his tubing. It was a long night.

Currently, Ben and his sister are hanging out together, starting in on their daily ritual of annoying the hooey out of each other. Ben’s mouth is much better. His ANC was over 2,500 at yesterday’s clinic appointment, so his mouth should finish healing in the next couple of days. Just in time for us to go to New York for scans and procedures. This visit will only be a couple of days. Then we’ll come back to Denver to do a cycle of shots in preparation for antibody therapy. Then we’ll be starting the last phase of this ridiculous journey. And hopefully getting on with our lives.

I’m finally seeing a light at the end of this horrific tunnel. I’m finding comfort in the hope that the doctors are giving us. I’m beginning to believe that Ben is going to be a long-term-on-this-earth kiddo. Unfortunately, I’m having a hard time convincing Ben of this fact. He is still so afraid that he is going to die. I’m searching for ways to parent this – it’s really not in any handbook out there – so I’m just muddling through the best I can. Reassuring him that there’s hope. That he might feel small and weak but he is so incredibly strong.

When I truly think about it, he’s like a fairy slipper orchid. When I lived in Summit County, I would pull out my hiking boots as soon as the weather permitted. One of my favorite trails was to Lily Pad Lake. There were sections of the trail that would remain snow clogged for a long time because it was shrouded by dense forest. And despite the fact that this trail was normally very busy (it was a fairly easy hike and culminated in a view of a large lake with a giant beaver dam = great reward with minimal effort) I loved it because it afforded me a look at the elusive fairy slipper orchid. This tiny beauty was capable of bursting through the lingering crust of last winter’s snow. I have no idea how it found the strength to overcome such insurmountable odds, but it always did. I knew that spring was truly coming whenever I caught that first glimpse of the fairy slipper’s purple crown, defiantly defeating its frozen captor. My body would tingle in delight as I marveled at the beauty of it. And as I dared my eyes to take in a little bit more of the frozen landscape, I would see many more tiny purple heads sprouting through the encrusted surface. Amazing. Life breaking free. Growing despite the less than ideal conditions. Enduring against all odds. Unstoppable. Supported only by its fragile base, crowned in its amazing glory.

I always wondered what made me stop to see that first fairy slipper orchid? When most people are trudging up the trail, precariously teetering between the snow pack and the pools of mud, eyes only on the end result of getting to the lake. What made me stop and see those miniature flowers on the ground? And what made me come back year after year in search of this tiny miracle of nature?

Now I know.

May Day! It’s a holiday, right? Actually, it represents different things all over the world. It’s known as Pagan holiday, a celebration of  leis in Hawaii, and some sort of uprising surrounding long working hours back in the late 1800’s… if you really want to know more, you can start your research here: http://en.wikipedia.org/wiki/May_Day.

Whenever I think of May Day, I always think of the movie Midway, the 1976 war film depicting the turning point of WWII, which was the Battle of Midway. This blockbuster featured a star-studded cast including the talents of Edward Albert, James Coburn, Henry Fonda, Charlton Heston, Robert Wagner, Pat Morita, Tom Selleck, and… Erik Estrada (this was after his big breakthrough role in Airport ’75 but before his stardom catapulting turn on CHiPs).

Anyway, the one and only thing I remember from this movie – other than soaring airplane sounds and bombs scoring direct hits – was one of the characters yelling “MAYDAY” from his cockpit. I recall being annoyed by it at the tender age of eight, thinking why would anyone scream out “MAYDAY” as their plane took a nose dive toward the planet instead of screaming out something like “I love you, Janet!” or “I’ll always regret not finishing college” or a quick shout-out to the Man Upstairs to save your weary soul. But no. It was MAYDAY. It wasn’t until I was in high school in Mrs. Ratchford’s French I class that I learned about the verb aider, which means to help, and is conjugated as follows:

I help – j’aide; You help – tu aides; we help – nous aidons; you (plural) help – vous aidez… a-HA! “Aidez” sounds like “AYDAY”. And the way the French implore you to help them is by saying “m’aidez”, translating to “help me”, which if you Americanize it turns into MAYDAY. Honestly, though, I simply cannot imagine any person of French descent asking for help in this way. They are probably still peeved with us for bastardizing their language and refuse to use the phrase, even if one of their limbs gets blown off.

Limbless and Profusely Bleeding French Man: “Forget eeet. I refuze to ask for zee help from you, you Americain Pig. You slaughtered our beautiful “m’aidez” and I would rather bleed to death than to ask for you to aide moi. Away with you.”

American Pig: (shoving hands in front pockets of his jeans and casually shrugging his shoulders), “Cool”.

American Pig steps over Limbless and Profusely Bleeding French Man and saunters down the street into a swirling mist of rain, whistling a French tune. A lone accordion fades in and joins in with the song, eventually overtaking the American Pig’s whistling. Camera pans to closeup of Limbless and Profusely Bleeding French Man as he silently mouths “MAYDAY”, expels his last breath and closes eyes.

Music swells. Fade to Black.

Ben is still in the hospital. I have a bit of a scratchy throat so Madeline and I are steering clear of the hospital today. I did phone in and talked to the Bean for a couple of minutes. He’s not saying much because he still is in quite a lot of pain, but at least he didn’t refuse to take my call like he did yesterday. He groaned a bit when I explained that I wasn’t feeling 100% and wouldn’t be coming to see him today. I hate that I can’t go, but I simply cannot risk getting him – or any other kiddos on the oncology unit – sick. So, Madeline and I are working on crafts. I may or may not do some laundry. I might sort through clothes and make a Goodwill run. Or, I just might lay in bed all day and watch “Edward Scissorhands” for the gazillionth time. Madeline just LOVES her some Tim Burton. I just LOVES me some Johnny Depp.

And if Johnny Depp can’t MAYDAY me through this day then I’m not sure who can.

Really. I’m not joking. Be Aware of the Hairball. Today is not necessarily a day of celebration, but merely a day of being aware. I wonder if it has a ribbon?

I’ve had lots of cats over the years so I’ve seen my fair share of hairballs. Some of my cats never had any problems at all but some cats just seem to be plagued with them. And nothing would help. Not leaving an open jar of Vaseline and baiting the cat to eat it nor feeding said cat a special diet of “hairball-remedy” food could alleviate the issue. If they were prone to them you just kinda had to live with it.

The worst hairball offender that comes to my mind is the cat that belonged to my step-dad, Rob, before he and my mom got married. I met this cat when I was 12 years old, when the cat was just a cute, wee-little kitten. I loved going over to visit the man who eventually became my dad especially because of the side benefit of getting to play with the adorable little kitten. I don’t believe Rob was in the market for a cat, but when his neighbor dropped it off one day at his house – kind of like a “drive-by” catting – it was love at first sight.

When I first met this cat, I asked what his name was. Rob said that he didn’t know because the cat had not formally introduced himself, which I found to be hysterical. Anyway, Rob eventually ended up calling the cat “Anonymous”. And while “Anonymous” was an aesthetically beautiful cat, he was the most foul little beast I’ve ever encountered. Don’t get me wrong, he had some redeeming qualities, like playing “fetch” with a wadded up paper ball (no joke!). But “Anonymous” was most famous for his “running three-room hairball”, where he would skid out in the kitchen (sounding like Fred Flintstone starting his car) and bolt through the hallway only to slide to a stop before ramming into the sliding glass door in the family room. Of course, this mad sprint was performed in tandem with laying a hairball that stretched from Point A to B. Heinous.

Other foul things that “Anonymous” did: The infamous roll-top desk hairball (yeah, try cleaning THAT up!), the “use the back leg to scratch behind the ear only to pop a giant cyst all over the bathroom mirror” maneuver, and then the “I’m not fond of you so I’m going to “mark” you”. I swear I’m not making this up.

“Anonymous” was not apologetic for any of his actions. He’d perform these amazingly disgusting feats only to eye you as if to say “Are you going to clean that up, or what?” He became quite the curmudgeon in his old age, often sitting on the gate to my parent’s driveway in German Village and hissing at the passers-by on a lovely spring day. My mom posted a sign by his “perch” that said Chat Lunatique (Crazy Cat en Francais) , which was a big hit in the touristy community. In fact, despite the passing of the “Anonymous Cat” – he succumbed to cancer – there have been many folk stopping by to ask about the Chat Lunatique and they are almost always disappointed to learn that he’s passed on to Kitty Heaven. If only they knew about the running three-room hairballs that my parents had to put up with….

I would never want to be any sort of animal that had to bathe myself or my offspring with my tongue. I have a feeling that I, too, would be susceptible to hairballs. Fortunately, one of my two offspring is currently follicly challenged, so grooming him would not be overly time consuming or resulting in many hairballs.

My poor little Bean. He’s really struggling right now. We knew that the days following his high dose chemo treatment would be horrible but I was hoping that those stem cells would be a little more helpful in creating a speedy recovery. Ben was discharged last Saturday from his round of high dose chemo. We went back for his stem-cell “rescue” on Monday, and by Tuesday he was struggling with a sore throat. He was admitted to the hospital because he stopped eating and drinking, and then began throwing up blood. By Wednesday he was absolutely miserable. Mucousitis was plaguing him from his throat to his stomach, making it impossible for him to take anything by mouth. No food, no water, no medicine. He was in a lot of pain. Since then he’s been sleeping a lot with the occasional foray into vomiting up blood. Tonight was a bit better than earlier today, hopefully tomorrow will be even better. The docs seem to think he might be ready for discharge by Monday, and I’m sure Ben will be more than ready to get out, too, but we’re not going to let them push him out before he’s really and truly ready.

Have I mentioned lately how much I HATE CANCER? I hate it. I really do. I hate it a whole real lot. I cried yesterday while looking at my teeny-tiny son lying there, refusing to snuggle with me because he was miserable, unable to talk to me because his mouth hurt, shooting up out of his bed when the pain got to be too much, throwing up due to a combination of the mouth sores, the pain meds, and not eating for several days. I cannot wait for this part to be over. I know I keep saying that… I can’t wait for surgery to be over, I can’t wait for chemo to be over, I can’t wait for the aftereffects of chemo to be over… and it’s all true. I can’t wait for ALL of it to be over. But I can only muddle through one section at a time. And I can’t wait for this part – the part where Ben feels absolutely horrible – to be over. Forever. Completely. All gone. Adios. I want my son to have “normal” normal. Not just the normal we have because we’ve been doing it for so long. I hate that this life of cancer has become our “normal”. So not cool.

I’d really rather be cleaning up hairballs.

Have I got a story for you. Don’t I always? And you love them. Don’t you? You know you do. Admit it. You can’t wait to immerse yourself in the gooey, sticky mess that surrounds me. I’m catchy. Addictive. I’m crack. Fly paper. A train wreck. A can of Pringles. Once you pop, you can’t stop. Not even if you wanted to.

I’m an underdog, so it’s highly likely you’re rooting for me. Well, most of you are. There are probably some who would like to see me maimed on the sidelines. Bleeding profusely. Might even take pleasure in finding me decapitated. But you’re reading, too. Because despite your disdain for me you’re addicted to my every move. It can’t be helped. I hope you can find the courage to be thankful you’re not me. But that’s another story. And one that I’m willing to share some other time when the wounds are not so raw.

Yep, I’m waaaaay off today. I’m tired. I’m sad. I’m angry. I’m frustrated. I’m ready to run away but am stuck in my own ooey-gooey mess.

I’m lying here in the bed snuggled up next to Ben. I occasionally reach over to rub the fine hair that is trying – in vain – to grow. Any day now the chemo is going to say, “Enough of that growing! Away with you!” And his whispery fine locks will come out in my hands. Scatter themselves across his flannel pillowcase. Get stuck in the saliva that seems to be congruent with mouth sores. Damn Cancer. I am so flipping sick of you. Taking my Bean’s childhood. Taking our friend Taylor yesterday evening. But I have to put up with you. You’re here, you’re destructive, and I have to figure out a way to deal with you.

But that mound of laundry is sitting in the corner of the bedroom. And it’s staring at me. Giving me the evil eye. I start to drift off to sleep only to be shaken awake with a nightmarish sensation that they’re coming to get me. The stains have formed an impenetrable bond and are able to stand on stiff legs. They’re raising from their mass grave that I’ve tried to bury them in and they’re surrounding the bed. Clamoring for a piece of my soul. “I DON’T CARE ABOUT YOU, LAUNDRY! YOU’LL NEVER TAKE ME ALIVE!” And that’s when they destroy me, ripping me to shreds, leaving me with nothing clean to wear at my funeral.

Cancer and laundry are very similar in the way that they simply take over if given enough room to spread. I’ve been on a mission lately to save my son from cancer taking over his sweet little body, now I’m going to raise awareness for the silent killer that stalks us all: Laundry.

People Against Dirty Clothes. Wash for the Cure. Pray for Tide (with or without an infusion of Febreze). The ribbon will be dirt colored marred with a variety of stains, but with a tiny area on the corner bathed in brilliant whiteness. The scratch and sniff version will have a slight tinge of bleach surrounded by the overpowering smell of congealed ketchup. At least, that’s what MY kids’ clothes smell like.

See? I told you I had a story. Aren’t you glad I’m not your mom? Aren’t you glad I’m not tucking you in at night and telling you my terribly demented tales? Actually, I don’t do this to my kids. I’m too busy telling Madeline stories about a character I’ve named “Princess Nine”. She’s a bit of a brat but always learns her lesson before the story is over. And then Ben. I used to tell him stories about Buzz Lightyear telling him the need for a good night’s sleep so he could help save the Universe. But lately, I’ve been using story-telling time to reassure him how wonderful he is. How many lives he’s changed. What a strong boy he is. I hope he believes me because that story is simply NOT a fairy tale.

Okay! Okay! Stop staring at me. Which load wants to go first?

Lalalalalalala. No. No. No. I’m NOT LISTENING! I CAN’T HEAR YOU! STOP! NO! I REFUSE TO LISTEN TO THIS!

Maybe if I continue to act like a child – the way I absolutely feel like acting right now – I can gloss over the terrible news that people keep trying to tell me.

She’s gone. My friend, Tammy, lost her daughter, Taylor, today. I’m closing my eyes. And shaking my head. Wiping away the tears that are streaming down my face. Because my friend lost her daughter. And I don’t know what to say or do. I don’t even want to hear it. I know I’m an adult. I know I should take this information with a bit more maturity than I’m currently exhibiting. But I’m not. I can’t. I won’t. I have mentally thrown myself on the floor and I am kicking and screaming because MY FRIEND LOST HER CHILD! My friend lost her child. I can say this sentence over and over, focusing the emphasis on a different word each time, and the sentence never changes. It continues to suck.

My friend lost her child!

My warped mind is thinking of the beautiful young girl with a quiet smile and dancing brown eyes, knowing that she was more of an adult in her too short of a life than I’m currently acting with all my 41 years of experience. I’m not rational. But clearly, cancer is not rational either. It’s supposed to attack the elderly who are ready to die. In my mind, an appropriate scenario for cancer to play would be as follows:  It shows up one day at the nursing home and says, “Oh. Hello there, Mildred. You’ve had a heck of a run, haven’t you, my dear? Well, now that you’ve loved and lived and aspired and achieved, it’s time to come with me. Close your eyes, Millie. Let me take over from here.” And Millie, surrounded by her children and grandchildren and memories of her 89 years usher her out to whatever is next. Sure, there were trials and tribulations along the way, but she never had to do anything horrific like bury a child. Overall, my protagonist had a pleasant life.

And putting the “making up crazy stories as a way to cope with my grief ” aside, I know that Taylor was extremely loved during her fourteen years, too. I’m sure she had family – maybe a friend or two – with her during her final hours, doing all they could to keep her as  comfortable as possible. Holding the hand that would never see an engagement ring. Kissing the lips that had most likely never known true love’s kiss. Gazing adoringly at her face, knowing that soon – too soon – she would be gone. Waiting. Breathlessly. For that moment she drew her last.

Oh, my dear, sweet Lord. My friend lost her child.

And this happened today.  A day that Ben and I were sitting in the very same hospital. On the same floor. Ben was getting his stem-cell “rescue”. We were right down the hall. And not that I could have done anything about it, but I hate knowing that this family was struggling right under my stupid nose. Too daft to recognize the swollen faces of the nursing staff – evidently distressed by what has to be a heartbreak that is all too common in their world. How do they NOT get attached to these children? How do they NOT mourn when one loses their battle? I knew something was up, but I was too lost in my own hooey. Too worried to see past my own situation. I didn’t reach out. I just didn’t know. I didn’t know.

I’ve been pulled out of my temper tantrum by my son running to the bathroom to  throw up. No doubt this nausea is an aftereffect of his therapy. He says his throat hurts, which means that the mouth sores are coming. Damn Cancer. You’ve had a busy day.

Rest your head on my shoulder, my sweet son. Let me comfort you. Pray over you. Love you. Maybe we can watch a silly kitty video on YouTube while we’re waiting for your pain medicine to kick in. Try to rest, little Bean. I can’t share this news with you tonight. I can’t burden you while you’re trying so hard to heal yourself. We can cry together later, when you’re stronger.

Although, I know he’s actually a lot stronger than he looks. He comes by it honestly, I guess.

Goodnight, Precious Taylor. Rest well.

Madeline and her Dad have a special game they like to play each morning called “Dragon Breath”. How to play: take turns treating your opponent as a breathalyzer by blowing your high-octane morning breath in the general direction of their olfactory nerve. Rules: 1) You cannot brush your teeth before playing. 2) You CAN fuel up by drinking coffee or having some other smelly breakfast food. Object of the game: Be the one with the smelliest breath to win. It’s good for multiple players, ages 4 and up. Good, clean fun (?) for everyone.

It almost makes me wish there were more breakfast foods with garlic as a main ingredient. I usually don’t play “Dragon Breath” with Matt and Madeline, but I might if I ate, say, garlic frosted corn flakes. Or powdered garlic donuts. Or French toast stuffed with garlic. Okay, I’m grossing myself out (which is pretty darn difficult to do).

I do love garlic, though. Spicy garlic chicken, mmmm. Oven-roasted garlic on melba toast crackers, double mmmmm. Flat bread pizza with mozzerella, basil, tomatoes and slivers of garlic, supersize mmmmm. I always have bulbs of garlic on hand in my kitchen. It’s good on everything. Well, except the majority of breakfast foods.

Not only is garlic delicious, but it wards off evil, too. I’ve used it in many “bad boyfriend” scenarios. It’s usually my last resort, but if a boy is particularly bad, I’ve been known to pull out my garlic necklace and wear it until the bad boyfriend returns to his casket. Or walks out into the sunlight and bursts into flames. Whichever comes firsts.

I’m wondering if I should make Ben wear a garland of garlic in his fight against cancer? It couldn’t hurt, right? The poor kid goes through so much already, I don’t want to further punish his self-esteem by requiring him to wear bulbs of garlic around his neck. I guess I’ll pass on that notion for now. But if it ever gets to that point where researchers say that garlic cures cancer, well, we’ll play a round of “Dragon Breath” after ingesting copious amounts of garlic and making Ben the breathalyzer. I’m sure he’ll be thrilled.

I’m at the point where I’m not telling him what’s next in treatment. It’s not that I’m trying to hide anything from him, it’s just that I’m tired of telling him one thing and then having to change the plans. It’s not worth stressing him out until we know the exact facts and when they are going to occur, which is often just seconds before a procedure actually takes place. This last trip to New York was so incredibly frustrating that I’m still trying to decompress even though we’ve been back in Colorado for more than 72 hours.

I won’t go into all the details for fear of boring the pants off of you – or frustrating you beyond belief – but the basic overview is as follows: Ben had surgery with the famed Dr. LaQuaglia at Memorial Sloan Kettering 10 days ago. While we don’t have the final pathology reports back yet, Dr. LaQuaglia believes that what he removed was scar tissue. Whew!

Here’s where it gets a little more confusing. Dr. Kramer, Ben’s oncologist, stopped by right before he was discharged to let us know what would come next. She mentioned something about chemo in Denver with a stem-cell rescue and then return back to NYC in a couple of weeks to repeat scans before starting the antibody therapy. We knew he would do the round of chemo, but we didn’t know if it would be in Denver or in NYC. And this was the first I’d heard about a stem-cell rescue. Dr. Kramer was talking about collecting stem-cells from Ben (via a catheter in his neck!) but I told her that I was confident that Ohio State still had stem-cells from his 2004 collection that we could use. She asked if we could verify that and Matt (via speaker phone) said that he would contact Ohio for a transfer. I have to give props to Matt here… he did a great job of coordinating the stem-cell verification and transfer.

The rest is a bunch of back and forth, too many cooks spoiling the pot, mass confusion, total frustration, desire to surrender but knowing that was not an option, culminating in the parents knowing way more than the physicians. I’ll say this now: WE NEED A COORDINATOR WHO KNOWS EVERY DETAIL OF BEN’S TREATMENT PLAN. While Matt and I know enough to muddle through, we are NOT doctors. We keep getting new information thrown at us from so many different outlets. It’s a “hurry up and wait” scenario and we’re juggling between three different facilities in Ohio, Denver, and New York. CRAZY!

I’m going to start throwing bulbs of garlic at these people.

So, all I know now is not much more than I knew several days ago. I’m taking Ben to Denver Children’s today for lab work. Columbus Children’s is working on sending Ben’s stem-cells to Denver for the chemo/stem-cell rescue procedure that is planned for sometime in the supposed near future. We’re scheduled to go back to NYC on May 13-14 for scans. And that’s all I know.

Until then, I’m gearing up for the ultimate round of “Dragon Breath” tonight. I’m thinking an Italian menu – garlic bread, homemade sauce with loads of garlic, with a side of garlic and extra garlic… might as well celebrate today to its fullest extent.