It’s “Clams on the Half-Shell” Day

Gross. NOT a fan of clams. In fact, not really a fan of any seafood. I’ll eat shrimp on occasion, but that’s about it. I prefer my seafood in its natural state – under water and still alive. And I don’t mean viewing them in the tank at my local grocery store. I’m talking about me wearing a wet suit and flippers, tank strapped to my back and breathing apparatus in place, mask that I’ve cleaned with a loogey (the only time I am willing to produce a loogey). Perhaps a knife sheathed and attached to my thigh to ward off menacing sharks? Okay, so I’m not THAT hot in my diving gear.

Actually, I haven’t been diving since Ben was born. But the year before he was born I spent 10 days in Grand Cayman and the majority of it was spent underwater. It was incredible. I saw lobster nearly as big as me. Sea turtles peacefully paddling through the depths of the ocean. Menacing barracuda staring me down (not so fond of that). Crabs. Moray eels. Stingray. Barrels of coral that I could fit in (but didn’t try so as not to destroy the delicate seascape). It was beautiful.

That life seems so long ago. I would love to dive again someday but it just doesn’t seem reasonable. It’s very expensive. Mandates travel to exotic locations (since I’m not interested in lake diving). And with Ben in active treatment for the next few years, I think I’m going to have to put my dream of diving away. It can’t even go on a back burner. It has to come off the stove completely. Oh well.

I have to say, though, that when I get completely stressed out and need to take a mental break, this is where I go. Under the sea. Every inch of me surrounded by water. The sensation of gliding effortlessly through the ocean. The only sound I hear is my intense breathing. Feeling so small. Enveloped by something so vast. Free, yet being held captive within its depths. Simple, yet complex. I guess that’s me in a nutshell. Or should I say clamshell?

Honestly though, my clamshell is at capacity right now. There’s no more room. I need to get an appointment for a mammogram and ultrasound done before the weekend (Doctor suspects fibroids – thanks to stress – but wants to be sure it’s not anything worse than that). Ben must have two cavities filled before the weekend. Friday he goes to a radiation follow up. Saturday is Madeline’s birthday and she’s having her party at Sweet and Sassy (a fun little girly spa). I need to make eight crystal tiaras before then, as well as get the cake made (I LOVE cake decorating – so it’s bound to be beautiful!) 😉 and get the little take-home boxes done. Then Sunday is Easter. I gotta squeeze egg-dying in here somewhere. And laundry, since we leave for New York on Monday for an indefinite amount of time. I have no idea how long it will take Ben to recover from his surgery and if they’re planning to do that big round of chemo in New York or willing to wait until we’re back in Colorado. We could be there for a good long while.

Add to that one of our little friends is not doing well. I don’t have all the details yet but from preliminary information, she’s been told she has 4-8 weeks left of her young life. My sweet Lord. I can’t even begin to process this. We just saw her at the hospital and she looked beautiful. I had no idea that her tumor wasn’t responding to treatment. I just didn’t know. And I feel like sh*t that I wasn’t more supportive. Sorry for the swear. There’s just no word that explains how bad this all sucks.

And our stupid cat hopped a ride to Boulder yesterday. I’m not sure if she was just curious or if she was trying to escape the stress here, but she jumped in the back of a van belonging to a very sweet person delivering food to us. About an hour later I received a phone call from the nice lady asking if my cat was missing. I wasn’t home so I wasn’t sure if it was mine or not. After a description and confirmation that the cat was, indeed, mine, the nice people brought her back. She rode all the way to Boulder (about an hour from here) without making a single noise. At least she’s back now and currently enjoying the luxury of a freshly made bed. If she was looking for a better life I’m sure she’ll eventually scratch my eyes out for holding her captive in this crazy clamshell.

With all that’s going on my stress level is off the charts. I take comfort wherever I can find it. But right now, there’s just too much to think about. It all feels like the end of the song “A Day in the Life” by the Beatles. The orchestral crescendos building to that final sustained piano chord at the end of the song feels a lot like my brain does right now. Building, building, building only to explode on that last note.

In fact, I said to Madeline last night, “I think I’m going to explode” to which her reply was, “I will miss you.”

And as I close my eyes and drift off to my underwater world of peace I try to find my battle scarred clamshell to hide in for a while, until I morph into a happy shiny pearl.

It’s Vietnam Veteran’s Day

The Great State of New York has deemed March 29 Vietnam Veteran’s Day because on this date in 1973, the last 2,500 troops were withdrawn from South Vietnam. This withdrawal finally ended our Nation’s military involvement in a very long and extremely unpopular war.  Over 58,000 soldiers lost their lives. It was bad juju all around.

I’m a product of it.

Oh, okay. You know me and my self-deprecating sense of humor. I dredge up woe for dramatic purposes, but I believe it adds depth to my storytelling. The stories are true – at least, to my knowledge – but I find it’s more entertaining to add some extra stink to my onion of a life.

But enough about that. My self-deprecating story goes like this: My biological parents met at a military function three weeks before they got married. For some reason, I like to believe it was a dance of some sort. At least it adds an element of romance to it. Anyway, details are unclear. My mother is from South Carolina and my father was stationed at Fort Bragg in North Carolina. I don’t know how they came to be at the same function, but my dad, being a charming, handsome, narcissistic sociopath reeled my mom in hook, line and sinker.

Now, from the stories I’ve heard, my father was NOT interested in a military career. He avoided it like the plague. I heard that he was offered a spot in the National Guard as opposed to being drafted, which he promptly messed up by never attending any of the meetings. So, he was forced to go to “The Show”. And I have no idea how he would go from “conscientious objector” to being a Green Beret… this transformation truly eludes me. But, the entity that is my father is a complete mystery to me. Why try to decode him now?

So. Here’s where I start to wing it. My dad heard that newlyweds didn’t have to leave to go overseas right away, so he gets my mom to marry him. Then he finds out that this was NOT the case.  Then he hears that if you’re expecting a child that deployment would be postponed. So, he procreates. And learns that he was wrong again. So now, the man has a new wife and baby on the way, and STILL has to be deployed? I bet he was kicking himself over screwing up the National Guard gig. So, ultimately, I exist solely as a ploy to keep my father out of the Vietnam War. I failed. Self-deprecation at its best. Right?

He went to Vietnam and got shot several times. His arm was badly wounded. He states that he has severe mental deficiencies thanks to his time in Vietnam. I sincerely believe that those deficiencies were a part of his original genetic makeup but am in full agreement that his four-month long stint as a Green Beret must have been hellacious. I give him credit for his tenure as a soldier, but that’s about all I can give him.

But, for the rest of the soldiers out there, I commend you. Thank you for your service. I can’t even begin to imagine what you go through for the sake of your country – something that you don’t even HAVE to defend. You made the choice. You stepped up and bravely made the commitment to serve in the armed forces. Or, some judge mandated you to serve your country or do jail time. 🙂

The closest I have come to any sort of combat is the battle I currently face with my son. We didn’t sign up for this. We did not make the choice to be deployed in this war for his life. It’s not an issue of bravery. We were drafted. I would rather be a “conscientious objector” of this war on cancer than to be in the throes of battle, but there’s no choice.

And we’ll fight to the finish, hopefully minimizing the casualties.

It’s “Near Miss” and “Chips and Dip” Day

On March 23, 1989, a gigantic asteroid came within 500,000 miles of colliding with Earth. 500,000 miles doesn’t really sound like a “near miss” but I guess in the world of asteroids we’re lucky it didn’t hit us. I was alive in 1989 (not to mention a full-fledged adult!) but I do not remember this being in the news. Oh, wait. I was a junior at Ohio University back in ’89. That explains so much. If you attended OU, you understand (I must have been at the Bagel Buggy 😉 ).

So, Yay, Earth! Congratulations on getting out of the way! From what I understand, asteroids come flying at us often and it’s only a matter of time before we get smacked in the head with one. Like I didn’t have enough to think about. It’d be pretty sweet if we could get some “gamers” shipped out to space and set them up with a humongous blaster to fend off the gigantic rocks hurtling through space… just like a giant game of Asteroids. Man, I loved that game back in the day. I believe my mad blasting skills would at least allow me to get to the second level.

But who cares about asteroids hurtling at our planet when there’s chips and dip to be had? I love, love, LOVE chips and dip. I’m sure I could find a way for it to fulfill a necessary daily requirement on every level of the food pyramid. Oh, okay, it’s my own made-up pyramid, and “dip” is the sole occupant of the base. But, in my mind, dip is fully prepared to shoulder the weight of everything else. Dip is just that good. It can do anything.

It’s still breakfast time here in Colorado and I’ve decided I’m not going to eat anything just yet. I’ve never been a fan of eating when I first get up in the morning but usually around 9:30 I’m ready for my cheesy grits. Today, however, I’m going to wait. I have to take Ben to the hospital to get a blood draw and on the way I’m stopping for a family size bag of Ruffles and a vat of French onion dip. And that’s all I’m going to eat today. Breakfast, lunch AND dinner.

Chips and dip are certainly my favorite foods in a time of crisis. While I’ve had no shortage of crises over the last few years it seems like the world’s chip supply is dwindling. I’m getting to the point of thinking I can’t function efficiently unless I’m faced with a crisis, but if I run out of chips, there’s gonna be trouble.

Several years ago I had to have a colonoscopy. For those of you who have had one, you know you have to do the “cleansing” portion for several hours before your actual appointment. In order to properly vacate your bowels, you must drink an unending supply of heinous-tasting liquid AND have nothing to eat for a very long period of time. It’s absolutely terrible. I was anesthetized for my procedure (which turned out nothing suspicious) and once I was safely deposited (by my dear friend, June) at my house, I ate an entire bag of Wavy Lays loaded with my favorite French onion dip. I was still foggy from the anesthetic, but there was no way it was gonna deter me from drowning myself in my favorite comfort food.

Okay, Ben is done with school for today and we need to go to the hospital for blood work. Hopefully those platelets are edging toward 100K, which will enable him to finally have that surgery in New York. I’m trying not to stress about it – thinking that there’s evil cancer cells inside of my Bean – and without chemo or surgery, they’re just hanging out in there with nothing better to do than grow.

Ugh. Where are the chips and dip? Come to my rescue, my precious. Or send an asteroid to put us all out of our misery.

It’s “Supreme Sacrifice” Day

I’ve got nothing in the sacrifice department that could even begin to touch what Christ did for me on that cross. Yes. I’m a believer. I’m a big believer. And I think I’d forgotten that until just recently.

I don’t just write on this blog, I keep a journal also. And, if you can believe it, I’m more open in my journaling than I am here on my blog. There are things I have in my head and on my heart that aren’t fit for public consumption – that, plus a lot of expletives, which are completely unnecessary in such a public forum. I guess I save my anger for my journaling. It’s very cathartic for me to scribble out my anger on paper. That way – if I want to – I can have the satisfaction of physically shredding it when I’m done.

I’ve been so mad with God. I have been for well over a year. I was on such a positive and enlightening path, felt at home at church, was active in Bible Study Fellowship (co-leading a preschool class), and just taking time every day to be in God’s word. Then there was trouble at home. Trouble with family. Trouble with Ben succeeding in school. I just got so tired and confused. The activities I had been involved with (childhood cancer support groups, camps for kids with cancer, preschool board, leading bible studies) imploded. I’m sure my mental state caused a lot of it, but the external factors certainly didn’t help any. I was pulled in so many directions and by people I can only describe as bullies. They wanted it their way or no way. It became too tedious. And I stopped talking with God.

So, I quit most things I was involved with because of the pressure. I didn’t feel comfortable anymore. I knew I wasn’t making a difference anywhere. And then Ben relapsed. My anger skyrocketed. What was the point of anything? Why should I care about God? He didn’t care about me… he certainly didn’t care about my beautiful seven-year-old son. And to sit there, with Ben on my lap, and have to explain to him that his cancer had returned and answer his question of “Am I going to die?”… what kind of God would put a child through that?

One that watched His own child suffer and eventually die, knowing it would all work out for a greater good. A supreme sacrifice.

Please do not think that I’m comparing Ben with Christ. All I know is my life and how it pertains to me. And it’s been painful. It’s been hard. It’s been debilitating at times. But there’s a lot of beauty to it, too. And the fact that I’ve made it through so many storms only to remain standing in HIS presence (even after taking a break while I worked through my mad) well, I’ll keep walking with Him. He made the supreme sacrifice for me. For Ben. For you. For all of us.

Things don’t always work out the way we want them to. In fact, that’s rarely the case. And really, if you truly think about it, it’s always for a greater good. And He can take it when we’re mad with Him. He loves us just the same.

It’s “St. Patrick’s Day”

I always wanted to be Irish — or at least have some sort of ethnic background to grab onto other than being mired in the gaucheness of being sans pedigree. I’m a mutt, plain and simple. A mixture of whatever was around at any given point in time. Evidently, my relatives didn’t stick to the guidelines of staying true to any sort of “roots”. They’re more of the belief system of “love the one you’re with”. Or perhaps they were attracted to tragic stories like Romeo and Juliet or Maria and Tony from West Side Story? The excitement of crossing ethnic and cultural boundaries was just too much of a temptation for my people?  I can’t fault them, I suppose. We are the stuff that makes our Nation the Great American Melting Pot (go ahead and dig out your School House Rock DVD – The Great American Melting Pot was one of the better “lessons”). I guess I could claim whichever heritage grabs my interest since I’m a little bit of everything. And since I resemble the Irish with my red hair, fair skin, blue eyes, and keen interest in anything slightly resembling tap dancing (although I could never hold my arms completely still like the Irish dancers do) I think I’ll glom onto the Irish. Aye. Plus, I love the idea of calling potato chips “crisps”.

So, with my newly adopted Irish heritage, I can dive head first into celebrating St. Patrick’s Day.

St. Patrick, you know, was NOT Irish. He was born into a wealthy Romano-British family during the fifth century. At the age of sixteen (in his “Pre-Sainthood” life) he was kidnapped by Irish raiders and held captive as a slave on the coast of Ireland.  While in captivity, young Patrick had a dream where God told him to flee from his captors, so flee he did. He hopped a boat back to Britain and joined the church upon his arrival. He eventually studied to become a priest.

Somewhere in his later years he was called back to Ireland to save the Irish people. Legend has it that St. Patrick used the shamrock to explain the Trinity (The Father, Son, and Holy Spirit) to those he was trying to convert. It’s widely known that the Irish are visual learners, so he was quite successful in his conversion endeavors. Oh, okay. I don’t know this to be a fact. But I am a visual learner and I am Irish. Therefore, all Irish people are visual learners. Isn’t that basic philosophical statistics? Based on my Philosophy 110 class at Ohio University (that I had to take twice) this is, indeed, a fact. Anyway, St. Patrick later died in Ireland, on March 17, 461, and a holiday was born.

While St. Patrick’s Day formally began as a Catholic holiday, it has gradually morphed into a more secular celebration of Ireland’s culture. It’s usually seen as a one-day break during Lent (the 40 day period of fasting) thus becoming a holiday revolving around drinking. I guess because alcohol is what many people would give up for Lent? I don’t know. It’s just a guess.

I think St. Patrick’s Day is truly the reason I wish to be Irish. I am not a fan of holidays in the traditional sense, usually because holidays are fraught with stress and family drama. There’s such high expectations for Christmas to award the “perfect gift”, Thanksgiving to show others that you’re so thankful for them that you can’t live without them, and Valentine’s Day necessitates getting creative enough to prove enough love to last until Sweetest Day. I’m not a fan of expectations (a definite side effect of my pantophobia). But I’m a big fan of small surprises. Like receiving a green marker on St. Patrick’s Day. That, to me, would be perfect. Something I didn’t expect. Something that speaks to me personally since I’m obsessed with markers and a variety of other office supplies. I never played “house” when I was younger, I always played “office”. I’ll take a stapler over domestic chores any day! But back to St. Patrick’s Day – that’s clearly the holiday for me. No expectations. And you can drink green beer if you want to. Take in a parade if the mood strikes. Wear green, which is a good color choice for me.

And when I truly think about it, this is the time of year when I met my musical idol, Peter Frampton. I was a big fan of his from the age of six (thanks to having an older sister who was also into music). I played “Frampton Comes Alive” on my turntable so many times that I went through approximately five copies of his double-live album. I even had it on 8-track. So, fast forward a few years to my early 20’s. I went to see Peter in Cincinnati and actually met him after the show. I blurted (maniacally) that I was a huge fan of his. He said that he was going to be in Columbus for a show on St. Patrick’s Day and I said (maniacally) “I KNOW! I’M GOING!”. He then asked me if I was a weirdo, which deflated me a bit. Then he suggested that we catch up with each other while he was in town. So, I remember green beer and pool playing with my musical idol, which I guess is what endears me to St. Patrick’s Day instead of the original thought of my wishing to be Irish.

So, never mind. Happy St. Patrick’s Day, everyone.

It’s “Jewel Day”

I wear the same diamond stud earrings almost every day. I stole them from my mother many moons ago (she does know that I have them). They are simple, elegant, and go with everything. If she were ever to take them back, I’d have to save my allowance to get another pair just like them. I love them that much.

I don’t have a ton of jewelry, but what I do have is very high quality. I have a ruby ring and earrings that my parents gave me (I’m a July baby and ruby is my birthstone). And I have a strand of pearls and matching studs that I pull out for special occasions. My parents got those for me as well. My parents have excellent taste in jewelry, and if I could have escaped with more family jewels, I imagine I would have.

I’ve recently been studying art deco design since seeing the Chrysler Building and Empire State Building lobby in New York City – I’m completely captivated by this particular style. During my research I stumbled upon a website featuring art deco rings and I’ve fallen in love. I would say that simplicity has always ruled my sense of style – never wanting to draw attention to myself – but I think I’m beginning to evolve. Things that I always tried to run from – the color of my hair, the fairness of my skin, the curves that have “plagued” me (AKA: my big butt) – I’m learning to embrace them. I’m learning that I’m a bit more complex than a plain white t-shirt and a pair of jeans. And when I write my first best-seller, I’m going to buy myself a beautifully ornate art deco diamond ring. Or, if the book doesn’t work out, I can just save up my allowance and buy one when I’m 90.

Actually, one of my jewels is right here beside me. My Madeline. She’s a one-of-a-kind. Her birthday is in April so she is fortunate enough to actually have the diamond as her birthstone. Being a diamond certainly fits her: she is vibrant, commands attention, and is very sparkly!  Ben, being a June baby, is my pearl. Quiet, cultured, takes his time so he can turn out something stunning. Both of my children are such treasures.

I met a lot of “gems” on this trip to New York. Getting out and walking around showed me a different side of the city and I was completely charmed. People went out of their way to be kind to Ben – from a man with Miniature Pinschers in Central Park to a man on the subway sharing his prayers to some very generous people on our flight back to Denver – so many people went out of their way for Ben. While the trip from a medical perspective was a bust, the people we met more than made up for it.

Thursday was the most emotional day of all. We went to the hospital to get blood work done only to be severely disappointed with the results. His counts would not support a surgical procedure at this time. I was surprised to learn that they usually wait about five weeks after the last round of chemo to do any surgical procedures, so why they had us come out so soon after his chemo is beyond me. Just another link in the frustrating chain called childhood cancer.

So, when we received the news that his counts were too low, they suggested giving him a platelet transfusion and then told us to go home. Going home, however, wasn’t just a jump in the car and get on the road. We had to call our friend with the buddy passes to get a flight home. Rush from his transfusion to check out of the Ronald McDonald House (which has to be cleaned – including washing the linens before check out). Roll our bags to the corner and hail a cab. Get the only female cabbie in the city, who was not an aggressive driver. She asked me which route I wanted to take to the airport and I said “the fastest”. She then told me that I picked the wrong time of day to get to the airport quickly, which nearly sent me over the edge. I was sweaty from cleaning like a maniac, packing quickly, running to catch a cab… all of this coming at me at the very last minute. I almost broke down. I asked her to just do the best she could – whatever happened, happened. We would either be killed by a more aggressive driver or we’d make it to the airport in a day or so.

I knew that the flight we were hoping to get on was booked to capacity, but we had to at least try. So, we showed up (safely, I should add) and checked in. I got the look of “Are you REALLY trying to get on this flight?” from the woman checking us in. And that’s when I started to cry. The day had been really disappointing, I just wanted to get out of there.

When we got to the gate, there was a young man in front of me also trying to get on the flight. He looked at me with the territorial “I got here first” and I glanced over at my bald headed son sleeping in a wheelchair, which meant to imply “I don’t care if you got here first, we’ll be getting on that plane ahead of you.” We both stood there, staring each other down, and he started to chat. He said, “I’ve been trying to get out of here all day. I need to get to Denver because my band has a gig.” I just smiled at him through my exhausted, tear-streaked eyes and wished him luck. Then I noticed the lady from the check-in counter speaking with the man at the gate. I couldn’t make out what she was saying but she kept looking at me while she whispered to her colleague. I thought she said something like “we have to get that baby on the plane,” which led me to believe that she was doing her best to help us get on the flight.

Finally, after all the ticketed passengers had boarded, there were five of us standing there getting ready to shred the gate agent. He said, “By the way, you all got on”. There was an audible sigh of relief. The guy trying to get to his gig nearly cried. He looked at me and said that he was having such a moral conflict of wanting to get to his gig versus letting the cancer kid go home. He was glad he didn’t have to make that decision.

Ben and I were the last ones on the plane. And, of course, we were in the very last row. So we had to walk down the long aisle, bumping everyone’s elbows with our bags as we passed, but it seemed that everyone was genuinely happy that we made the flight. As I buckled Ben into his seat my body started to shake. Too much stress and no more room for it. Some of it had to come out. So, the tears started to flow.

The man in the seat next to me was very comforting. We started to chat a bit about Ben’s condition which morphed into a 3 1/2 hour conversation about a little bit of everything. The most incredible tid-bit of information I learned was that he used to TAP DANCE on BROADWAY!!!! I nearly fell out of my seat since tap dancing is my absolute favorite! I was prepared to cry all the way back to Denver, but, thanks to my neighbor on the plane (and a Bloody Mary) the day ended on a much better note. He was an incredible ray of sunshine.

We also met a breast cancer survivor on our flight back to Denver. She made sure we were set up with snacks for the flight. She works in Manhattan, but her husband is stationed at Ft Buckley here in Colorado. She was so incredible and wanted to offer her services anytime we were coming to New York. She said that she can assist in getting tickets to baseball games, take us out to dinner, whatever we needed. While we were waiting for our bags to arrive in the airport, she gave Ben a $100 gift card and told him to buy himself a couple of games for his DS. Wow.

So, we didn’t accomplish the medical aspect of why we were in New York City, which was a big fat bummer. But we were able to meet jewel after jewel in a city that is not exactly known for having people with sweet dispositions. I know that we were blessed to the meet the rarest gems the city had to offer. And that experience was priceless.

It’s “Chuck Norris’ birthday”

Carlos Ray “Chuck” Norris is 70 years old today. I would have NEVER guessed this to be his age, but honestly, I haven’t given old Chuck a whole lot of thought until just right this minute. I know there’s been a big revival of “Chuckisms” swirling about the Internet but I hadn’t done any research on it – until today.

I found a website dedicated to “Chuck Norris-isms” and decided to import the following: 1) It only takes Chuck Norris one roundhouse kick to get to the center of a Tootsie Roll flavored Tootsie Pop. 2) Chuck Norris once tried to sue Burger King after they refused to put razor wire in his Whopper Jr., insisting that that actually is “his” way. 3) Chuck Norris has the greatest Poker-Face of all time. He won the 1983 World Series of Poker, despite holding only a Joker, a Get out of Jail Free Monopoloy card, a 2 of clubs, 7 of spades and a green #4 card from the game UNO. 4) Some people wear Superman pajamas. Superman wears Chuck Norris pajamas. Number three is my personal favorite. However, you can choose your own favorite from the list here: http://historyaddict.com/chucknorrisisms.htm.

My whole body hurts today. I’m not sure if it’s all the walking I’ve been doing or the simple fact that the stress is finally catching up to me, but my head is throbbing and my soul is weary. I am very anxious for counts tomorrow morning so we can figure out what’s next. Either he’ll pass and we’ll get set up for surgery ASAP or he won’t and we’ll go back to Colorado. The reason that we’ll have to go back instead of waiting it out is that Dr. LaQuaglia is going out of town in the middle of next week for a conference and if we can’t get in for surgery, there’s no reason to stick around here. Plus, I’m running out of money (even MORE incentive to walk everywhere, plus, anyone trying to mug me will be sorely disappointed!)

If we head back to Colorado in the next couple of days, I imagine that means we’ll start the whole vicious cycle all over again. They’ll want to do low dose chemo so the spot that is currently in him won’t grow anymore, which will lead to being sick all over again, and then the start of more shots, needing more transfusions, and rebounding all over again just to get back to the point we are right now. One step forward, five steps back. So, hopefully, he’ll pass tomorrow morning and we can get surgery over with on Friday. We really need to get on the other side of this hurdle. I’ll tell ya, being in limbo is exhausting. Will we clear the pole and move to the next level or will we get smacked in the heads and be forced to sit on the sidelines? Purgatory. This in-between stage stinks. No wonder the Catholics want to avoid it in their afterlife.

Maybe Chuck Norris is in NYC tonight celebrating his big 7-0. Maybe we should hunt him down and ask him to scare the cancer out of my Bean. I bet Mr. Norris would be more than willing to deliver a roundhouse kick to the beast messing with my son. And then we could get on with our lives already.

It’s “Panic Day”

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. 🙂

It’s “Frozen Food” Day

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