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Panic schmanic. I don’t have the time or the energy to panic. And besides, Ben and I went to see “The Lion King” tonight, which promotes the whole “Hakuna Matata” theme, so I’m just going to go with it. If I feel the need to panic, I can wait for “International Panic Day“, which occurs sometime in June.

Oh, okay, I have many mini-moments of panic throughout the day. There are times that the stress just overwhelms me and my mind peels out leaving burn marks on the pavement only to skid to a sudden stop like a drag racer playing red light-green light. I’m not in control. I can only react to the commands. STOP! GO! There seems to be no in-between.

Ben and I got up early yesterday morning to head to MSKCC for surgery. We checked in at 10 am, did blood work and hung out in the darkened corner of a shared pre-surgical room. Ben played his game boy and I listened to whatever was playing on our roommate’s television. It was some sort of “reality” court show – Judge Judy or something like it – which usually makes me feel like I live at the top of the human food chain since the participants on these shows are D-U-M-B, DUMB! I am awfully quick to forget my redneck roots.

So, I’m sitting there with Ben – fairly relaxed considering the stressful situation – and listening to the man on the court show tell the judge that DNA testing proves that he is the father of just six out of many kids clamoring for the right to call him daddy. At the pinnacle of this particular case, our nurse, Courtney, comes back to tell us that surgery will be postponed thanks to LOW PLATELETS. She told us to come back on Thursday morning to recheck his counts and if they’re high enough then MAYBE surgery will take place on Friday. Ben was exasperated – he wants to be done with the whole mess – and I’m not sure whether I should be relieved or cranky. So I decide to be a little of both.

Some people believe that ice cream fixes everything, so we went to Serendipity to get some. Ben’s sundae was bigger than his head! And, of course, he barely made a dent in it. We came back to the Ronald to chill out, got some pizza, played with friends and watched tv.

I woke up this morning to an absolutely stunning day. The sun was shining and the temperature was perfect. I was a bit depressed because of the delay in surgery, but knew that we needed to get outside as soon as possible. I put Ben in the wheelchair (he’s having some bone pain from the GCSF shots) and headed over to the park. We walked up Fifth, through the park, around the lake, over to Central Park West, down through Strawberry Fields, listened to street musicians (the guy with the bagpipes was my personal favorite), saw where John Lennon was shot, and then walked down through Columbus Circle to Times Square. Oh yeah, we stopped by the Carnegie Deli for dinner. Ben had scrambled eggs and I had the biggest flipping reuben sandwich I’ve ever seen in my life. I barely made a dent in the truckloads of corned beef. I’m just not that big of a carnivore. 🙂

Then we saw The Lion King. It was good. Not as wonderful as Wicked (in my opinion) but Ben loved it. I’ve decided that I LOVE the theater. I’m amazed by the costumes and how a story is translated into an event that occurs on a single stage. Stunning. After the show we walked back to The Ronald. I’m guessing that I walked about 10 miles today. It’s probably an over-estimation, but whatever. I walked A LOT (I have to interject here to say that “A LOT” is actually two words. I’m hoping that this is something that most learned in middle school, but it seems that many people are not aware that A LOT is NOT spelled “alot”. Knowledge is power).

So, after many miles of walking, we get back to The Ronald only to find that we were locked out of our room. It seems that our social worker did not extend our stay after the surgery was postponed and since I was out walking all day today, I didn’t know that there was an issue until 11 PM tonight. I was tired. A little bit sunburned from the beautiful weather. Slightly stinky from all the exercise. Feet a bit sore. And Family Guy was getting ready to start. After a few minutes of discussion, they renewed my pass until the 11th. If Ben doesn’t make counts Thursday, I have a feeling we’ll be heading home. Ugh.

I will not panic.

I just have to remember that none of this is in my control. All I can do is go with the flow. Hakuna Matata. No worries. I’ll get up tomorrow and walk off my anxiety no matter what the weather is.

Panic Schmanic. Of course, I’m saying this in my best Manhattan accent, which I have to say has reached a level of sounding like I’m a true-blue native. Well, almost. 🙂

My thighs and bottom have taken on the appearance of a bag of frozen peas thanks to my lack of exercise (and general aging process) in the months since Ben’s relapse of neuroblastoma. But if walking the streets of Manhattan doesn’t lead to my having “Buns of Steel”, then there’s no hope for me, because I have been walking my butt off over the last few days! Well, not quite. 😉 But I sure hope I’m making a bit of progress. Swimsuit weather is coming up and I don’t want my “frozen pea” thighs scaring all the children.

Ben and I arrived in Manhattan on Tuesday evening after a near-miss on our flight out of Denver. We were using buddy passes (thanks for the passes, Janet!), which requires us to fly “stand-by”. When we checked in at the airport Tuesday morning, we were told that getting a seat on that flight “didn’t look good”. This was a bit more excitement than I was hoping for. Thankfully, we got on (who can resist my little bald-headed Ben?) and we made it to LaGuardia without further incident.

We checked into “The Ronald” and then jumped back in a cab to the Grand Hyatt to meet the Fraziers. They were in town for a convention and leaving early the following morning. We went out to dinner with them and then checked out Grand Central Station, which is an amazingly beautiful building! While we were inside the station, an employee came over and used his ticket puncher to make a paper alligator out of tickets just for Ben! Although our time with Aunt Patty and Unkie was extremely short, it was still a wonderful welcome to Manhattan. Miss you guys!

The next morning we headed over to MSKCC to meet with Ben’s surgical team. We arrived on time (7:30 AM Eastern Standard Time, which was 5:30 AM Mountain Standard Time  – waaaay too early for me!) They accessed Ben’s port (he cried because they didn’t numb it), drew blood, and called us back 30 minutes later to tell us that Ben’s counts were too low to do surgery. Wha-wha-what? Remember, I was hearing this shocking news in MY time-zone. My brain was struggling to process and my mouth couldn’t come up with anything intelligent to say so I just sat there babbling “but… but… but….” The nurse told me that we’d have to wait and see what the expert (Dr. LaQuaglia) thought, but he was still in the OR operating on another kiddo. So we went out to the waiting room to wait for Dr. LaQuaglia. And wait. And wait some more. And wait some more. Ben and I fell asleep sitting in the lobby.

Nearly FOUR HOURS later, we finally met Dr. LaQuaglia. He was very good with Benjamin and very straight-forward with me. While I got the low-down on the “non-fun stuff”, i.e., chest tube, Foley catheter, possible PICU, epidurals, incisions, etc., Ben got to see photos from his most recent scans. Dr. LaQuaglia  pointed out interesting landmarks like Ben’s spleen and even used big, technical medical terms in a sentence.  “Look at this white part, Ben. These are your guts.” Ben was semi-impressed. Dr. LaQuaglia printed out the photo of Ben’s chest cavity as a take-home party favor. Yay.

So, Dr. LaQuaglia said that Ben would have to go back on GCSF shots (to stimulate white cell growth) in hopes of getting him ready for Monday’s surgery. Great. His nurse told us to head downstairs to the pharmacy and pick up our five-day supply of medication and syringes. I did as I was told. We had to wait another 45 minutes only to find out that we were denied coverage. I asked why and the unpleasant pharmacy person told me that I didn’t have coverage at their facility. I argued that “YES, WE DO, WE’RE PRE-APPROVED FOR ALL SERVICES HERE IN NYC ‘CUZ OUR INSURANCE AND DRUG COMPANY SAID SO.” And then I called Matt to help in starting the process of calling Medco. The unpleasant pharmacy person didn’t offer any direction as to what else I should do or who I should call… she was just evil. She told me that I could certainly pay $5,000 and walk out with the medication Ben needed to start immediately, or I could mail-order it and get it sometime the following week, which clearly wasn’t an option. She didn’t care about the situation. She had absolutely no sympathy. I asked her to PLEASE help me out and, with a heavy sigh, she said that she could do it just this once but I had to understand that she was doing me a great big favor and that she wouldn’t be able to help me again. Seriously? Thanks. A lot.

As I made the decision to NOT genuflect to the mystical granter of GCSF medication, I snatched the brown baggie of drugs out of her hand and gave her my meanest stink-eye, which is neither very mean or stinky. But it’s about as mad as I could get. We trotted back to “The Ronald” and I gave Ben his shot.

I was so discouraged by the events of our day that I called Ticketmaster and got the most awesomest seats I could get to “Wicked“. Ben and I headed down to The Gershwin Theater (stopping by the Nintendo store first) and then went to our very first show on Broadway. Oh, My, Stars. It was PHENOMENAL! We were so close to the stage and the show was simply amazing! We laughed. We cried. We LOVED it! I wanna see it over and over, but will probably never get seats as incredible as we had ever again! It more than made up for the earlier hospital/pharmacy experience. It was truly one of the best experiences of my life.

Thursday, we slept in and then I borrowed a wheelchair to take Ben for a walk. I wanted to explore a bit and knew that Ben would get tired, so I packed him up in the chair and off we went. We scooted over to Central Park (about 1.6 miles away) and walked around the lower part of the park. Beautiful! Then we went to the Central Park Zoo. I got pooped on by a bird in the rain forest exhibit (which I hear is good luck?) and we watched the sea lions do tricks for their dinner. I got splashed by an overzealous sea lion, which I’m hoping washed off most of the bird poop.

Friday, we went back to the hospital to re-check counts. While his counts are still on the low side, they are planning to proceed with surgery on Monday. I am continuing his shots over the weekend. He might need platelet transfusions during surgery, but that’s not uncommon for Ben anyway. So, we check in to MSKCC on Monday at 10 AM with surgery scheduled for 1 PM. I will be blogging to keep myself busy, so be sure to look out for updates.

After leaving the hospital, we hopped a cab to Battery Park (YIKES! Super expensive!). We took the ferry over to see Lady Liberty and Ellis Island. While we technically didn’t have tickets that offered access to the monument, I asked the guard if he would allow us access anyway. He took one look at Ben and said “You can go anywhere you want. You are my personal guests.” He gave us passes and off we went.

The grounds surrounding the statue are lovely, and you can get some fantastic photos from the “grounds only” pass, but having access to the monument is uber-cool! We both really enjoyed the museum and then we walked the steps to the top of the pedestal. Oh, okay, I carried Ben on my back most of the way because it was a very long climb and he was worn out. One of the guards encouraged me to take a break about 1/2 way up but I knew if I stopped then I would never make it the rest of the way. Oh, I should state that the elevator was out of order. I am normally not a glutton for such horrific punishment. We walked around the top of her pedestal, look up her skirt (it was really neat to see the internal structure of the statue through the glass ceiling), and see some amazing views of Manhattan. Awesome!

We also took the ferry to Ellis Island, and while it was interesting enough, we weren’t too terribly excited since our ancestors have most likely been in America for eons.

Then, we took the subway (!) to Times Square and walked in circles for about an hour. I was slightly confused and kept getting turned around. I tried (but failed) to sound convincing as Ben kept asking “Mom, are you SURE you know where you’re going?” after we passed Radio City Music Hall for the 20th time. On the plus side, I saw a tranny in a spandex shop trolling for sequined material on 38th. Ben did not see “her” so it was a moment solely for me. I’ll never forget it. At least until I see my next tranny.

We spent some more time at Nintendo World, made a quick (but not quick enough for Ben) stop at the American Girl store for Madeline (I MISS MY MADZILLA!) and took a cab back to RMH to chill out for the rest of the night.

Today, we took the subway to the Brooklyn Bridge. I took  Ben in the wheelchair because I knew it would be another long day of walking.  Let me tell you, the subway system is NOT friendly to the disabled tourist. Anyway, we walked across the Brooklyn Bridge and snapped a few touristy pictures. Then we went to the Financial District and checked out the WTC Memorial work in progress. There’s not much to see yet, but it was still a very somber experience. Ben was just a wee little man when 9/11 happened. We sat looking at the construction as I explained to him that I held him in my arms as I watched on TV while the second building got hit and then collapsed. How surreal it was to watch. How the events unfolded as we learned that it wasn’t just an accident, that terrorists were responsible for the attack. I’m sure seeing Ground Zero shortly after 9/11 was much more emotional than what I saw today, but I’m certainly glad we made the visit.

Then we took a short buzz around Chinatown. Ben was really disappointed. I was, too, because the whole place smelled like dead fish and cigarettes. GROSS! I’m glad for the experience, but I doubt I’ll make any effort to go back. On the plus side, I think Ben’s burning desire to go to China has been quelled for the short term.

We took the subway back to the closest handicapped accessible subway station (51st Street) and hoofed it back to RMH (73rd Street). I can feel those frozen peas melting off my backside. I just hope it’s visible and not just a sensation I’m having.

So, tomorrow, we go to MoMA for the Tim Burton exhibit. I’m looking forward to it but sincerely wish Madeline was here to see it, too. She is a BIG fan of Tim Burton. She loves his creepy stuff (just like her momma does). Hopefully we can get her out here before the exhibit ends in late April.

And then, Monday, we start the next phase of the cancer-ending crusade. I’m glad we’ve had so much time to have a BLAST in NYC because the next few weeks are gonna be tough.

Pray for my Bean, please. Send him all the love you can. I need your help to get him through this next part of the journey – I can’t do it without your love, prayers and support. <3

I used to be able to sleep anywhere. I could sleep on a hardwood floor, in the middle of the woods without a tent, or even with my feet stapled to the ceiling. I considered it to be one of my special skills.

In recent years, however, I’ve lost my ability to catch Zzzz’s just anywhere. It could be that I’m a “hardened” adult now – becoming used to sleeping on a quality mattress – or it could be that my aging body just can’t take the obscurity of sleeping wherever it happens to land. It really is too bad though, because I’m still required to do it.

When Ben was first diagnosed with neuroblastoma, I was eight months pregnant with Madeline. I was very uncomfortable. Swollen ankles, itchy skin, broken heart… and having to sleep in the hospital, either on the “plastic coated” couch or the “sometimes reclining” chair, well, it was less than comfortable. As you might imagine, good, solid sleep was a very sporadic luxury.

Ben’s initial stay at Children’s Hospital was three weeks long. Between all the procedures and surgeries and scans – and then the initial round of high dose chemo – I can’t say that it was particularly restful. I’d drift off to sleep only to be awakened by an orderly sent to get my son for some random scan or procedure. And then, when it was nighttime and the floor was quiet, I’d try to sleep only to jolt up off the couch, wracked with worry and overwhelming fear that my son was going to die. I’d stuff my fat feet into the only shoes that would fit – my slippers – and take to roaming the halls, passing room after room of children who were sick. Children who were dying. Families that were huddled together. Families that were falling apart. And here I was with my very own sick child with a new baby coming in about a month. How would an infant fit into this new world we were living in? How COULD I bring an infant into this environment? How would this all work?

Someone even said to me “This new baby will be such a blessing. You know, in case, …” I turned and walked away before they could finish the sentence “in case Ben dies.” So NOT comforting.

The first time that Ben was discharged from the hospital we went to stay at my parent’s cottage in German Village. It was just moments away from the hospital as opposed to our house that about 25 minutes away. We wanted to be as close as possible because even though we were technically out of the hospital, we would have to go to clinic just about every day for follow-ups and blood transfusions and all that fun stuff. Anyway, I was looking forward to sleeping in an actual bed. I pulled my exhausted body into bed. Ben was snuggled in between me and Matt and already asleep. I leaned over to smooch his sweet forehead and started to panic when my lips came in contact with his feverish skin. As I was praying that having hot lips was some odd side effect of a stressed out pregnant woman, I searched for the thermometer and placed it in Ben’s underarm. Crap. Fever. Get out of bed, Matt. We gotta go back to the hospital.

We sat in an ER triage room for a bit as they were getting a room ready for us. Unfortunately, the room we had left only hours earlier that day was not available. As I was holding my sweaty Ben on my shrinking lap, I stroked his feverish head. And that’s when his hair started to fall out in my hands.

We finally got to a room on the oncology floor in the wee hours of the morning. I laid down on the plastic-coated couch to try to get some rest. Must sleep. Eyes heavy. Breathing beginning to regulate. Then BEEEEP. Machines going off to alert staff that Ben’s medicine had run its course. Then came the onslaught of staff milling about the room attending to Ben. Ugh. Back to the grind.

Ben’s chemo schedule dictated that I pick a day to go to the hospital to deliver Madeline. I chose April 3. I went in to the hospital at 8 AM, started the drip to induce labor at 9 AM, had my water manually broken at 10 AM, and had a beautiful baby girl in my arms by 1:18 PM. She was truly beautiful. She was fairly quiet and seemed to want to sleep a lot. Hallelujah!  Matt left Riverside Hospital to go back to Ben. Madeline went to the nursery. I crashed for the first stretch of blissful sleep that I’d had in weeks. The nurse only interrupted me when it was time to feed Madeline.

We left the hospital less than 24 hours later. I like to joke that I didn’t get the full benefit of my maternity stay and it was clear that I was going to be gypped out of my postpartum depression, too. In fact, whenever I have a really bad day, I just say it’s the latent side effects of my postpartum depression.

But with Ben’s treatment schedule AND a new infant, it was clear that sleep would be low on the list of priorities. Madeline was less than a week old when Ben had to be readmitted to the hospital for his next round of therapy. Matt slept in the “sometimes reclining” chair. I slept on the “plastic-coated” couch with Madeline wedged in between me and the wall. A perfect scenario? No. But we had to make due with what we had to work with. And we made it work fairly well.

Ben and I are going to New York in two days. The first few nights we will have the comfort of the Ronald McDonald House. The rest of our stay will most likely be in a shared surgical recovery room at MSKCC. Or, possibly, the  intensive care unit at Cornell University. I’m sure it will not be luxurious accommodations – especially if we have to SHARE a recovery room – but we’ll make it work.

But if our roommates happen to snore, well, I guess I won’t have any trouble finding earplugs at 3 AM in New York City. I’m just hoping that the catch-phrase of NYC being the city that never sleeps doesn’t have to apply to me, too.

I’m going to take a nap. 🙂

Yes, it’s Carnival Day. But seeing how I have a strong aversion to rides that are assembled in a single afternoon and my consistent inability to win anything on the Midway by ringing canes, toppling milk bottles, or drawing the “lucky duck” out of the water of the “who knows where THAT’S been” water trough, I’m just not a fan of those fly-by-night carnivals. I’m NOT including the Pataskala Street Fair, but then again, my attraction to this particular event is based on catching up with friends from school. And maybe eating a corn dog or two.

So, I’m going to finish the post I started yesterday, which was “Pistol Patent Day”. I was consistently interrupted throughout the day (including a hospital visit) and didn’t get to complete the post, which leaves me feeling more than unsettled. So, since I had already completed a fair amount of research on yesterday’s “holiday”, I’m going to give it a belated celebration. Here goes.

On February 25, 1836, a young Samuel Colt obtained a patent for his revolver. I must interject here and say that a pistol is NOT the same thing as a revolver. I can only imagine that the creators of this “holiday” felt that “Revolver Patent Day” didn’t have nearly the same kick as “Pistol Patent Day”. I would liken this to the fact that any other name for the fabled Peanuts character, “Peppermint Patty”, would be less than adequate. Would she be as spunky if her name was “Chocolate Patty” or even “Spearmint Patty”?  I think not. Perhaps “Cow Patty” would have worked, but seeing how they already had “Pigpen” on board, well, who needs two smelly characters?

Back to Samuel Colt. He was 18 years old when he began working on developing a gun that could shoot multiple bullets. Of course, like many 18-year-olds, he lacked the funding necessary to build such a beast. His father, not really believing that Sammy’s idea was much of anything, “helped” his son get a prototype made, which ended up exploding. See, Old Daddy hired cheap machinists, and even back in the 1800’s, you get what you pay for. So Samuel, not deterred by his father’s lack of enthusiasm and support, decided to seek capital elsewhere.

His dedication paid off when Colt obtained a patent for the revolver at the age of 22. It took a while to build his empire but his revolver concept was a priceless contribution to the development of war technology and orthodontia-challenged hillbillies everywhere. When he died in 1862, he left his wife and son a $15,000,000 estate. YEEEEE-HAWWWWW! Guns AND money! I’m sure it was a powerful combination even back in the mid-1800’s.

Samuel Colt

I learn so much when writing these posts. I probably would have never thought about old Samuel Colt and his world-changing invention nor would I have learned that he was one of eight children – five boys and three girls. Two of his sisters died in childhood and the other committed suicide later in life. I can’t help but wonder if she used a gun?

I grew up with guns in the house – in a locker that was never locked – AND which was kept in the same room as all of my toys (I wonder what my family was trying to say?)  I was, however, taught to respect guns at an early age (never aim at your step-brother, neighborhood cats, parents, etc.)

My first step-dad was the gun lover in the house and every Friday night we went to a shooting range that was located under a bowling alley. The noise in that place was astounding. The cacophony of bowling balls dropping, pins crashing and bullets flying necessitated headphones that were first cousins of the quadraphonic 8-track style.  Add the yellow aviator shooting-range glasses and a sweet jacket with padded elbows and it’s a complete look.  I had my very own rifle with a custom made stock and actually turned out to be an excellent shot. Yep.  We had lots of guns, a bullet press, and even a make-shift range in the basement of our house. We fully exercised our Constitutional Right to bear arms at 175 N. 5th street in Kirkersville, Ohio.

I would wager that the majority of people in Southwest Licking County had quick access to firearms. In fact, it wasn’t uncommon for my male classmates to bring their guns along with them to school. Of course, they were always safely mounted to the gun rack in the back of their pickup truck. Yet, despite the ammo-charged atmosphere, not one of my classmates ever pulled a gun because their pottery project didn’t turn out or they didn’t get the lead in the school play. It just wasn’t done. My reflection on the differences between my generation and today’s troubled quick-to-shoot youth leads me to believe that it’s all the fault of video games. And the lack of corporal punishment, which my school banned the year I graduated. A good, solid butt-whuppin’ can be beneficial in many scenarios. I guess it doesn’t hold up well to fire power though. Never mind.

I couldn’t let this post close without pointing out that while the Colt 45 was, indeed, a firearm crafted by Samuel Colt himself, it is also a delicious malt beverage. Honestly, I don’t know if it’s delicious since I’ve never tasted it and never plan to. Although when I visited the Colt 45 Malt Liquor website (yes, they have one) it featured Billy Dee Williams beckoning the visitors to come on inside. “Colt 45 works every time”. I couldn’t resist the power of Billy Dee. So I entered my date of birth to “prove” that I was at least 21 years of age. When the opening phrase of “Congratulations, Player, you’ve been approved” popped up, I felt a great sense of joy. Adulthood does have certain benefits – guns and liquor being two of them. And besides, who can resist Billy Dee AKA Lando Calrissian, the main man of Cloud City in the Empire Strikes Back. He knows what he’s talking about. And if he says that “Colt 45 works every time” then who am I to say it doesn’t?

I also found information on the Colt 45 website about a popular drinking game that I’m sure is sweeping college campuses Nationwide. It’s called “Edward Fortyhands”, which derives its name from Johnny Depp’s character in Edward Scissorhands. What you do is this: take two forty ounce bottles of a malt liquor beverage – preferably Colt 45 – and tape one to each hand. Whoever drinks both beverages first (YES, 80 ounces of malt liquor) gets to be “freed” of their empty 40-ouncers. I absolutely love the name of this game but cannot condone the behavior. This just screams “alcohol poisoning”.  Maybe it’s the mother in me? See photo below.

Maybe this is how Lando Calrissian lost the Millennium Falcon to his old friend, Han Solo? Both of them being gambling men, I can totally see them playing a round of “Edward Fortyhands” for the pink slip to the Falcon. I would think that losing a round of “Edward Fortyhands” would turn Billy Dee off malt liquor much less encourage him to be the official spokesman for Colt 45, but what do I know?

I checked my many resources on holidays and all of them agree that today is International Dog Biscuit Appreciation Day. If this is all I get to work with I guess I’ll come up with something. Besides, I’m bored. Ben and I are just sitting here in the lobby at Children’s Hospital waiting to be seen by a doctor. He’s developed a cold – thanks to his sister graciously sharing hers – (finally! She’s learning to share!) and we need to get him well before next Tuesday. He’s precariously teetering on being borderline feverish (which is B-A-D for the Bean). If he has a fever, we’ll be admitted. Ben HAS to be better by 3/2 because we’re traveling to NYC for his surgical consult on 3/3, with surgery taking place on 3/8. Getting over this next hurdle can’t come fast enough. It currently feels like we’re running through molasses and will never gain enough speed to clear it.

So. Dog Biscuits. I ate dry cat food once (on a “double-dog” dare) and the primary flavor was salt. It wasn’t horrible but I don’t expect I’ll ever do it again unless absolutely necessary – like something nuclear destroying the planet and I’m the last existing person and all there is to eat is cat food. I’d most likely eat it then. But seeing how they just busted that terrorist guy living behind my house, I feel a little bit safer. This fact makes the reality of eating cat food a bit more distant than it was, say, yesterday before the terrorist entered a guilty plea. However, we are traveling to NYC next week, and that is a primary target for their terrorism. Why Manhattan? I mean, really. Isn’t the challenge of getting my child through treatment for relapsed cancer enough? I have to think about the possibilities of suicide bombers on the subway? Give me a freaking break already.

Okay. The doctor is here. Ben’s platelets have dropped and his white count isn’t outstanding… looks like more neupogen shots at home. The nurse just came in with an ominous looking machine designed to suck snot out of his nose… we’ve done this before in order to rule out infections… and it’s terrible. As soon as Ben saw the machine he started crying “WHY???” He hates this process even more than getting shots.

So, I held out a biscuit. I said, “Make it through this, Ben, and we’ll go to Target.” Perform this one particularly nasty trick, kid. You’ll get your treat. I might have to get a treat, too. Too bad Target doesn’t add vodka to their Icee machine.

“Oh Lord it’s hard to be humble when you’re perfect in every way. I can’t wait to look in the mirror ‘cuz I get better lookin each day. To know me is to love me, I must be a hell of a man. Oh Lord it’s hard to be humble but I’m doin the best that I can.”  ~Mac Davis

I used to love me some Mac Davis. Back in the 70’s, my Grandma Sarah used to make AWESOME paper dolls. She’d get a brown paper bag, fold it up multiple times and go wild with her scissors only to turn out a long string of dolls all holding hands. It’s a process I’ve never learned to replicate (much to my dismay). Anyway, it was inevitable that I would name one of the dolls “Mac Davis”. I’d draw him wearing blue jeans and scribble in his trademark curly hair with my Crayolas. I saw him at the Ohio State Fair way back when the fair actually featured quality talent. Yes, back in the 70’s, Mac Davis was considered to be “quality talent”. You might be surprised to know that Mr. Davis wrote a few of Elvis’ more popular tunes, including “In the Ghetto” and “A Little Less Conversation”. Writing popular songs for “The King”? It doesn’t get much better than that. I can see why it would be hard for him to be humble.

Being humble in today’s world is certainly a trait that falls all too often by the wayside. Today’s environment tends to dictate competition. Being the BEST. Looking out for Number ONE. Look at me. Praise me. Love me. Because I know everything.

I used to teach a variety of boating – also known as small-crafts – at a summer camp during the late 1980’s. I was considered to be the rowing expert but I also taught sailing, canoeing and kayaking. Really, when you take these four areas of small-crafts, I was best at canoeing. It really is my favorite overall, but since I was the only person on the small-crafts staff who had any sort of sculling skills, rowing fell to me by default. I enjoy it, but I’m in no way an expert.

I felt differently about canoeing. Pushing off from shore with my paddle in hand, gliding across a glassy smooth lake, my paddle silently working the water. My strokes dictating my direction and speed. I knew exactly where to place my weight based on what direction the wind was blowing. Kneeling in my canoe grounded me. We were one. Honestly, I could drive a canoe better than a car. I could back up, slalom, even parallel park in my metal Grumman. It was sheer bliss.

The last week of camp was traditionally known as “The Olympics”. The entire camp was split into two teams, the Red and the Blue, and spurred fierce competition. There were track and field events, team sporting events, and, of course, waterfront events. The counselors were more or less coaches during most of these events, but there were a few activities that were specifically for staff. When it was announced that there would be a canoeing event for staff, I chuckled to myself because I knew that gold medal would be mine.

The other counselors knew it, too. I was the one who was up early to glide across the lake in my canoe. Going out on the lake each morning was my way to decompress. Have my quiet time of reflection. Center myself before the day was overshadowed by the chaos and dramas of 12-year-old girls. And, over the eight weeks of camp, I really sharpened my canoeing skills.

So, when it was announced that the canoeing event would feature a blindfolded canoeist guided by a counselor seated in the front of the canoe, I still felt confident that I would take the medal. I was paired with another counselor and we agreed that I would be blindfolded and she would be the guide. My opponent was giggling with her guide that she hadn’t canoed in a long time. I leaned over and whispered to my teammate, “Prepare to win”.

We took our places. I placed my blindfold and gripped my paddle, soothed by the familiarity of how it fit in my hands. I was ready. When the air horn went off, I heard my opponent’s sloppy paddling begin, slapping the water with great fury. I took my first long stroke, knowing that my canoe was headed forward toward the buoy. My paddling was smooth and strong.

It was when I needed to make a 180 around the buoy that trouble came. My guide told me that we were behind a little bit and it threw off my concentration completely. I couldn’t make the turn. I had trouble listening to my guide’s instructions and got completely frustrated. Then I heard the air horn. My opponent had won. I pulled off my blindfold to see that not only had I lost big time, but I was way off course. I swallowed my pride and skillfully maneuvered my canoe to get back on course and make my way to shore.

I messed up big time.

It was a grand lesson in humility to come back to that shore. All my small-craft co-workers looking at me with severe disappointment since I had lost to someone who hadn’t paddled a canoe in years. How did that happen? Why did that happen? I can only chalk it up to my being so cocky. So confident that I would cream my opponent. I took myself too seriously and it knocked me down a few pegs. I could have said something like “I let her win”, but that would be a lie. I wanted to win. I planned to win. I didn’t win. I careened off course like the skier on “Wide World of Sports” who was used to display “the agony of defeat”.

So, the gold medal went to someone else. And, admittedly, it was extremely difficult to keep my mind open to the fact that someone without as much skill as I had ended up with that medal. It stung. But I mustered up the courage to congratulate her with sincerity. She was elated. How could seeing her be so happy disappoint me? It’s NOT all about me. Everyone has a place under the sun. All we can do is our best.

And as long as we are sincerely trying to be the BEST “me” we can be, then it’s all worth it. Even when we lose.

Seriously. Where would we be without batteries? Batteries make the world go ’round… at least until they wear out.

My batteries need a recharge. Unfortunately, rechargeable batteries were not available when I was born, so I’m stuck with having to replace them every so often. Mine are currently all corroded and stuck together, acid dripping out of them, forming toxic icicles in my soul.

Man. Am I dramatic, or what?

Really though. Madeline woke up last night around 2:30 AM with what seemed to be the start of a urinary tract infection. She did have chronic issues about a year ago but she’d been infection-free for quite some time. I, too, had the same issue when I was six years old. Just ask anyone who was in The Evil Mrs. Sutherland’s first grade class at Kirkersville Elementary… EVERYONE remembers that I peed on the classroom floor because The Evil Mrs. S wouldn’t let me go to the bathroom. That woman should have NEVER been a teacher. Clearly, I’m still struggling with the trauma she induced. My mom said, “Don’t worry. Nobody will ever remember.” And then, years later, long after we had graduated, my dear friend, Holly Crawford, said “Hey! Remember when you peed in Mrs. Sutherland’s class?” I told her I didn’t remember. And then I went upstairs and got out my old voodoo doll I had created in Mrs. Sutherland’s likeness and proceeded to poke the Old Bat in the eye. I’m sure she’s passed on to whichever side she was going to by now – she was “way old” back in ’73 – but the ceremonial eye poking made ME feel better even if it had no effect on the original Evil Mrs. Sutherland.

Don’t you just love my diatribes?

So, Madeline was up every three seconds last night, which was taxing on my already tired soul. I had taken a sleep aid (no longer taking Ambien because of its ability to make me eat an entire box of Little Debbie’s without my knowing it – why have all those calories if I’m not going to remember enjoying them?). Madeline is the kind of kiddo who doesn’t like to be alone so each time she got up I went in to the bathroom with her. One of her sessions lasted 45 minutes, which meant that I was sitting up against the bathroom wall trying hard not to fall asleep only to occasionally smack my head against the wall when I drifted off. Good times. She finally fell asleep around 5 AM and slept soundly for quite a while, and today she seems to be doing okay. Hopefully this was just a temporary thing. Matt worked from home this morning and let me sleep in. So, I slept until 11:30 (thank you, Matt).

But now that I’m awake I’m reminded that my batteries are running out. My head is throbbing. I’m speaking like a record on 33 1/3 rpm. My movements are jerky. I don’t work when my switch is in the “on” position. My screen always says “PC Load Letter” (movie reference). In short, I need a recharge.

Maybe I’m wrong about what today’s holiday is all about? Maybe today is about beating, as in “assault and battery”. I wasn’t aware of this, but in some jurisdictions, “assault” is the VERBAL threat of violence and “battery” is the PHYSICAL act of violence. I was always under the impression that assault and battery were both physical, thus being chronically confused as to why the two were always conjoined. I thought that maybe adding “battery” was a layering of something more heinous. Something medieval. Like:

Ren dude 1: “After I assault thee, I shall batter you about the neck and head with me mace and flail.”

Ren dude 2: “I cry your mercy, Good sir.”

Ren dude 1: “Then make your leave, you plague-sore! You boil!”

Ren dude 2: “Huzzah! I must away!”

Ren dude 1 (to self): “Me thinks I shall batter that heir of a mongrel wench on the morrow.”

Fade out. Curtain.

Clearly, I’m working on minimal battery power here, so I’m off to find some caffeine. Or hook myself up to my Sears DieHard. Maybe I just didn’t calculate what sort of Cold Cranking Amps I’d need when I moved to Colorado? Maybe I just need to upgrade to a higher voltage? Or will the good, old-fashioned jump start suffice? I can never remember positive versus negative terminals, which might result in my exploding rather than just starting, and that would NOT be good.

So, whichever battery you feel like celebrating today, please have fun, be careful, and don’t land yourself in jail. And whatever you do, do NOT think that batteries are an acceptable gift. Buying your kids a battery operated toy does not dictate that the batteries needed to operate said gift should be wrapped separately. They are ONE UNIT! A child who unwraps a pack of batteries will be severely disappointed and might batter you about the neck and head with their mace and flail that Auntie Sarah bought for them from the following website: http://a2armory.com/

Now you understand why I bought you that chainmail outfit.

More on the morrow. 🙂

A year or so ago, as I was leaving Bible study, I pulled through a McDonald’s to get Madeline a McNugget Happy Meal for lunch. As I pulled forward to pay, the cashier told me that the lady in the vehicle in front of me had already paid for my order. The cashier said that she did the same thing every week – paid for whoever was behind her – and went on her way. As I looked forward to catch a glimpse of the sort of woman who would do such a selfless thing,  she was gone. I don’t think I’ll ever forget her random act of kindness and it certainly put a smile on my face. I’ve always wanted to do that – pay it forward – but I’m always afraid I’ll get hit with the lone guy who is making the Mickey-D’s run for his entire department. I’m stingy, I guess.

Oh, I’m not all that bad. Recently, I was in line at the hospital cafeteria getting my standard lunch of a turkey wrap and a bag of chips. The guy in front of me was buying his lunch only to find that he had forgotten his wallet. The cashier was slightly annoyed, but not terribly upset. She called him “sweetie” and told him to bring her what he owed tomorrow (evidently this guy was a medical student of some sort and would be coming back to the hospital the following day). Before I could think about it I pulled out some cash and paid for his meal. He thanked me and went on his way. When it was my turn to check out, I told the cashier that she was very sweet and I always appreciated her demeanor whenever I was in her check out line. She got a bit teary and thanked me. I mentioned that being in the hospital with your child was hard enough so when you run into any sort of kindness it’s such a blessing. We’ve since become pals.

Her name is Eleanor. And since that day, I always go to her check out line. She always gives me a bit of a discount. We gave her a picture of Ben that she keeps at her home. She prays for him every night. She gives me encouraging words whenever I’m getting my turkey wrap. Two days ago when we were in the ER with Ben, I stopped by to say hello. She had a book for me and a Bible for Ben. She had been holding it at her register until she saw me again (which had been at least three weeks). She is a great comfort to me when I am having the crappiest of days. Had I never said anything to her – telling her I appreciate her – we might not have the relationship we have today. Random? Yes. But oh-so-lovely.

Over the past several years, we have experienced many people going out of their way for us. People who want to do something nice for Ben. People who want to help us through this tremendously stressful time. Many of these people we know, but there are so many who we’ve never even met. Their hearts go out to Ben or they’ve been through a similar situation. Love comes from the most interesting places – and surprisingly not where you THINK it’s going to come from.

My advice: Don’t set yourself up to fail. Don’t wait for someone to do something nice for you. Don’t wait for someone to be kind to you. Don’t expect love from the “traditional” sources. Get out there and DO IT YOURSELF. YOU be the one to start. Do something random. You’ll find love in the most amazing places. And if you’re doing it for the “thank you” or for the “accolades” or because you think you’re doing someone a favor, don’t do it. That is the wrong reason. Love unconditionally. Don’t look to see who is in the car behind you before you decide to pay for their happy meal. Just do it.

Ahhhh. There’s nothing as sweet as a newborn baby. Precious. Cooing. Little limbs flailing all over the place. The bond that you form in those first few moments after your baby’s birth can either be enhanced, or destroyed, all over what should be a simple process: giving your child a name.

As you’re holding your sweet new infant in your arms, it’s highly likely that you’ve already contemplated names. Maybe all you were waiting for was to find out the gender in order to decide on the name? Maybe you already knew what you’d be having and the name was set in place? Maybe you had several names in mind but was waiting to see what the baby looked like in hopes of trying to match a name to the baby’s personality? Maybe you were obligated to use a family name in order to lengthen the line of III, IV or V’s? There are many possibilities.

At birth, I was given the name Sarah Danel Phillips. “Sarah” was for my paternal grandmother. “Danel” was for my biological father, whose name is Danny. Not Daniel. Not Dan. But Danny. Jacob Danny Phillips. He used his middle name, so it was decided that I would go by my middle name, too. Plus, my Grandma Sarah was still living so I imagine they didn’t want to have two Sarah’s running around. So the first 20 years of my life I was Danel Phillips.

My parents divorced when I was fairly young. It was not amicable, most likely because my biological father is a complete idiot. But I was stuck with being named for him LONG after he was gone. Not cool. For the uninitiated, (and honestly, who IS familiar with this name?) it’s pronounced “Duhnell”. It was inevitable that it would be mispronounced. Dan-yell, DAN-elle, Day-nell, Duh-nail. It was massacred consistently. And even when I would say it for them in slo-mo, they would always say “Duh-what?” It was tedious. It was especially ridiculous when trying to “introduce” myself at any function that had loud background noise. I’d hear the all too familiar “Duh-WHAT?” I just started telling people that my name was Penny.

Then, in 1990, my Grandma Sarah passed away. While the event in itself was disheartening – I truly loved my G-ma – I thought that I could officially start to use my first name of Sarah. So I started immediately. When asked my name during any new encounters I would smile and say “Ssssaarraahhh”. I’d say it slow, lengthening the “s” and the “ah” at the end. I felt as if I was the Breck Girl shaking my head of luscious golden hair as I said it. The beauty just dripping off of my stunning new personality. Mmmmm. It was delicious.

I started using Sarah during my Junior year of college. I continued to use Danel in all of my classes and with my already established friends, but new scenarios called for the use of Sarah. Then, one day I was typing a paper on a new-fangled thing called a computer. I had actually received a typewriter for my high school graduation and used it for nearly every paper I ever wrote during my undergraduate studies, but I worked at the local Kinko’s and thought I’d give this thing called an “Apple” a try. First, I typed in my name. D-A-N-E-L. And it gave me an angry squiggly line underneath the letters. What’s this? Oh. Of course. It doesn’t recognize D-A-N-E-L. So, up pops a list of suggestions for what had to be an incorrect spelling. And then I was presented with what this “Apple” thought would be the equivalent of a “DANEL”. One of the very first options it posted was “dunghill”. Dunghill? A pile of POOP? A Sh*t pile?I was absolutely mortified. This name had to go.

It was a bit harder than I expected to just immediately switch names. Asking family and friends to eradicate Danel and only use Sarah was asking quite a lot. They all had to be deprogrammed.  So, even after I graduated from college I didn’t deter people from calling me Danel.  Then I got diagnosed with thyroid cancer. As soon as I was healthy enough, I packed up my little Ford Escort and moved to Summit County, Colorado. I left “Danel” behind in Ohio. In fact, in 1994, I legally changed my name from Sarah Danel Phillips to Sarah Hinson Washburn. Hinson is my mother’s maiden name and Washburn is my step-father’s last name. Danel Phillips was officially dead to me.

Since changing my name in 1994, I’ve had a couple of other last names. I don’t really discuss the first husband for many reasons, but mostly because his last name was just ridiculous. So, in signing up for a Facebook account, I didn’t have the simple option of listing a maiden name because none of my high school friends ever knew me as “Sarah” (although the 1986 issue of the Wahigan Yearbook does list me as S. Danel Phillips).

So, in listing Sarah Brewer, most people from high school probably thought, “Oh, hey! That’s Sandy Brewer! (Who is another fine WMHS-er and my best friend from elementary school). So, I’m an ever-changing kind of girl. It would be impossible for the average person to keep up with my name changes, but thankfully I look pretty much the same as I did in high school, so people can hopefully tell from my profile picture who I really and truly am. And I’m sure they say “Hey! That’s “Duh-nell!”

When my children were born, I insisted on good old-fashioned names that would transcend time and repel any confusion of pronunciation. Someday they might decide that they hate having a classic name and want to change their name to Topaz or Spongebob or something else.

And I’m completely cool with that.

I guess these two are celebrated simultaneously because if you spill milk on your white t-shirt then you’ll have nothing to cry over. However, if it’s chocolate milk, you’re screwed.

Today is supposed to be a day of optimism. Chin up! Life can be messy! White shirts get pit stains! Sh*t happens! I’m thinking the people who created these “catch phrases” never spent time on a children’s oncology unit watching their child be pumped full of poison that makes them sicker than you’ve ever seen them before.

Honestly, this is supposed to be a low dose of chemo for Ben, but this Irinotecan has made him sicker than anything he’s ever had. This drug is a menace. All I can say is that it better be doing what it’s supposed to be or I’m gonna… I’m gonna… I’m gonna… crap. I’m gonna do nothing. I’m so tired of feeling helpless when it comes to caring for Ben. Hugs and love and kisses just cannot compete with his questions of “WHY is this happening to me?” as he’s throwing up. I’m his mom. I’m supposed to protect him from icky stuff. Scare away the boogey man. Clear out monsters from underneath his bed. If only this were that easy.

So, I’m supposed to say (with a smile) “Well, I can’t change that my son has cancer! Might as well make the best of it! Yippee!” And I do try. I really do try to make the best of it. But it often feels like we get some of that spilled milk cleaned up only to drop a whole gallon of it all over a priceless silk oriental rug. Then it seeps down into the storage area holding album after album of precious photos that cannot be replaced. It’s wrecking so much. Taking too much.

I’m mad today. I know I’m not alone in this battle and I know I’m not the only one to have ever walked this road. I also know that we have an excellent prognosis but the steps to get there are slippery with lots of spilled milk. And I probably won’t cry about it today, but there are some days that I just can’t help it.