It’s “Umbrella Day”

I never seem to have an  umbrella handy when the weather warrants the use of one, but I sincerely think that umbrellas are overrated. It’s very uncommon that I am in need of protection from the elements (at least rain) since I rarely dress up and my hair is styled in such a manner that it always looks the same regardless of it being wet or dry. As long as I have a rubber band to pull it back, I’m good.

I don’t mind walking in the rain. In fact, I love it. Especially summer rain. I remember my younger years vividly, walking around my neighborhood (Kirkersville, Ohio) during the summer months. I always wore shoes, well, because I was freaked out by feet (see the “Wiggle Your Toes Day” post) plus the asphalt was so stinking hot. The tar they used to patch the potholes would bubble up into blisters in the heat. Then the rain would come, which mandated the discarding of shoes so I could splash in the puddles. Wonderful, warm puddle water. And squishing the ooey-gooey tar bubbles between my toes. What a comforting memory.

I’m a water baby when it comes right down to it. My skin, unfortunately, isn’t a fan of the sun, but I like being in, on, and around water – as long as it’s not a beach. I don’t like sand. But I love to sail and canoe and row and swim and fish and skip rocks. And I love to watch rain hit the water.

I don’t need no stinkin’ umbrella.

I’ve been so incredibly tired lately. I’m sure it’s a culmination of travel, stress, broken toes, no clean laundry, more chemo, misalignment of planets, blocked chi… all that mess. So, yesterday, after chemo and picking Madeline up from school, I laid down for a bit. I blamed my broken toe for the need to kick back and relax, but really, I was just simply exhausted. Madeline eventually curled up with me, snuggling into my side. I held her and stroked her hair, telling her what a wonderful little person she is. She looked at me and smiled, blinking her big blue eyes that were growing heavy with sleep. We both needed some alone time together where we did nothing but just “be”. For her to hear from me just how special she is. I try so hard to let her know how special she is all the time, but sometimes it’s really hard for her to understand why Ben is getting all the attention.

She eventually fell asleep in my arms. I listened to her rhythmic breathing as she rested peacefully under my umbrella of love. I want to protect her from every harm, every heartache, every hurt that might ever come her way, but I know my umbrella can only cover so much. But in showering her with my love hopefully she’ll learn to weather the storms that will undoubtedly come her way whether she has an umbrella or not.

I love you, my little Madeline. You are my sunshine.

It’s “Toothache Day”

I’ve already told you about my toothache woes in a prior “Stronger Than I Look” post. And while you should remember all details of each and every post I’ve ever written, here’s the synopsis: a dentist broke a needle in my mouth when I was very young and then the same dentist extracted my impacted wisdom teeth many years later without putting me under to which I hyperventilated myself into a “snorting” oblivion. End result: I’m supersize scared of needles, especially anywhere near my mouth. And I snort when I’m terribly upset.

So, why does the toothache have its own holiday? Who on earth would celebrate a toothache? I wasn’t sure so I had to do some research. Some say this holiday coincides with the day that the Hershey Corporation was founded, which was February 9, 1894. Others think that it’s a celebration of the Feast of St Apollonia, which is also February 9th.

St Apollonia is celebrated in certain circles as the Patroness of Toothaches. See, back in her day, she had all of her teeth broken out during a pagan uprising. Then, if that wasn’t enough, she was given the choice of renouncing her Christianity or being burned alive. She jumped into a pit of fire voluntarily before her persecutors could throw her in.  This was back in 249 AD. So, now, because of her martyrdom, you’re to ask for her intercession when you have a cavity. I wonder how she feels about that? If she’s sarcastic (like I am) she would say something like “Really? Patroness of the TOOTHACHE? I got robbed. And why is today a celebration of my FEAST when they KNOW I don’t have any teeth? I guess I’ll just have a couple of melted Hershey bars.”

But then again, she is a SAINT. She wouldn’t own a personality disorder like sarcasm.

I couldn’t find a picture of her smiling.

So, I have a broken toe. I busted it yesterday when I accidentally kicked a suitcase that was laying in the middle of the floor. It’s my middle toe – or the “piggy who ate roast beef” – and it appears that I’ve broken it at the top joint. It hurts, but at least it’s a pretty purple color. I tried to insert a picture here, but technology has failed me at this point in time.

Having this broken toe and then learning that the toothache has its very own patron saint made me curious if there was a patron saint of broken toes. There’s not. The closest saint would be St Drogo, who is the patron saint of broken bones. He is also in charge of shepherds, coffee houses, hernias, mentally ill people, and unattractive people. Sort of a “catch-all” of patron saints I guess. And yet, all Apollonia got was the toothache. She WAS robbed.

So, this is what I do with myself while my son sits through an infusion of chemo. My brain goes a million miles a minute and I catch what I can to pass it on to my loyal readers. I have to tell you, I am NOT in charge of my brain. It does its own thing and I keep up with it as best as I can.

Some would call me mentally ill, but at least that still qualifies me to fall under St Drogo. I know he’s got my broken toe and my defective brain, I just hope he’s got my back.

To learn more about what Saint is in charge of your “state”, check out http://saints.sqpn.com/

More later. 🙂

It’s “Lame Duck” Day

A “lame duck” is not an injured water fowl. No. A “lame duck” is someone whose tenure has run out. Someone who needs to be shown the door. One whose glory days are long behind them and now they’re just taking up valuable space. I’ve been out of the workforce for a long time (and I do not miss it a bit) but I’m thinking that I know something that fits this “lame duck” title well. Neuroblastoma.

In its heyday, neuroblastoma coursed through my son’s body, eating away at every healthy cell Ben had. It caused him pain. It took away his ability to be a normal toddler. It kept him from play dates and sandboxes (yes, he couldn’t play in sand!) and having the typical fun that any toddler should be having. It even took away all the progress he had made with toilet training. Once treatment started there was no way I was going to hold Ben accountable for going potty like a “big boy”.

Neuroblastoma is a Lame Duck.

We’re showing you the door, you big bully. You tried to come back but my Bean is stronger. He’s got Love. Strength. Prayers. And the best treatment team available. You’re going down. And you don’t get to keep any benefits or draw pension. You are useless and must be destroyed. You’ve occupied precious real estate for too long and now you’re being evicted. Don’t even think about finding another place to live. You’re not welcome. In any child. Ever.

We’ll be leaving NYC in a couple of hours. While we didn’t exactly get the road map of treatment we were expecting, we did hear the most wonderful news: Ben is CURABLE. And while this is absolutely positively the best news ever, he still has a long road in front of him.

Over breakfast this morning, I explained to Ben what he was going to have to endure over the next few months. He knew that the overall outcome would be great, but he wasn’t made aware of the details – the steps he would have to take to get to this “final level” of being cured. So, I told him. His big brown eyes fixed on me, occasionally widening when I said words like “chemo” and “surgery” and “antibody therapy”. Then the tears. I held him on my lap in the brightly lit Ronald McDonald house cafeteria as he cried and asked “WHY?”. And felt like a lame duck when I couldn’t answer his questions. All I could say was that I would be with him every step of the way.

So, a plan is in place. We’re tired but absolutely NOTHING will stop us from fighting. We’ll get you through this, Ben. Pinkie promise.

It’s “National Weatherman’s Day”

Weather is fascinating to me, especially since it only gets crazy if I have something planned. For instance, we have a flight out of LaGuardia planned for tomorrow afternoon but there’s a snowstorm looming over Manhattan. I’ve heard this storm could dump anywhere from 3 – 18 inches of snow (quite a large margin if you ask me), and every New Yorker I’ve talked to today has said something like “Oy, good luck getting out of here tomorrow, we shut down over two snowflakes.” So, to ask me to “celebrate” the sketchy job of reporting the weather, well, we’ll see how I feel about weathermen tomorrow. I’m kinda hoping this storm is just a bunch of hoopla. I will not be disappointed if they’re completely wrong and tomorrow greets us as a bright, sunshiny day. 🙂

So. Yesterday after Ben got his MIBG injection, we decided to head to the Empire State Building. It is truly an awesome experience. I loved the lobby. I loved all the art deco embellishments. I loved the thought of King Kong climbing up the side and fighting off airplanes. It’s a gorgeous building. We had to go through metal detectors once we got in line and my immediate thought was “uh-oh, Ben is radioactive.” We’ve had this experience before at the Denver Mint – Ben actually shut that place down thanks to his being radioactive! Right as I had this thought and was flagging down someone from security to let them know, the machine started beeping. Poor kid. He wasn’t even through it yet and it was going off. The security guard was really nice, though, and pulled Ben around to the other side. It was absolutely no big deal at all!

We bought our tickets and headed to the observation deck. The nice fellas selling maps gave all four of us the audio tour device for free (cancer-kid perk I’m sure). Once at the top, we ventured outside. Ben was not a fan of the height and Madeline was not a fan of the cold (how on earth did Fay Wray and Jessica Lange exist in their filmy, slinky gowns while braving not only a giant ape, but the NY weather?) so the kids headed back inside with Matt. I took the audio tour. It was cold but boy, was it an amazing little tour. I learned an incredible amount about NYC and I have to say that, thanks to this little endeavor, I feel much more better about NYC (I know, poor grammar, but I love saying “much more” together). I have a better idea of the layout now and understand lower, upper, midtown, etc.

After they pulled me away from the amazing Empire State Building, we decided to go to Times Square. Boy, is that place bright! It was fun to see. Ben and Madeline started getting tired but they perked up once we stopped in at Toys R Us. We rode the ferris wheel, looked at all the toys, got lost in the life-size Barbie Dream House (Mad spent an extraordinary amount of time in here). Then we walked over to Nintendo World (our second visit this trip). I’m sure this will be the store we go to every time we travel to NYC – it really is awesome.

We caught a cab back to RMH and found they were hosting an Israeli folk dancer and a buffet dinner featuring falafel and hummus. Ben caught sight of the food and immediately said “pass”. Fortunately we had some left-over pizza in the fridge. 🙂 The folk dancer was a lot of fun, Madeline danced with him for about an hour. She had an absolute blast! Then we had gigantic, yummy cupcakes for dessert. Red velvet with cream cheese frosting? HEAVEN.

The Ronald McDonald House does a lot of amazing things for the families… tonight they had a “chef cook-off”, kinda like the Iron Chef. It was televised locally and then the food made during the cook-off was passed around for all to enjoy. So far, they’ve had something available for dinner every single night we’ve been here. Next time you roll through the drive-thru at McD’s, throw a few coins in the RMH box. It’s such a wonderful charity.

I know, you’re wondering how today went. Well, Ben and I got up early and walked over to MSKCC. We checked in and started the MIBG scan a bit after 8 AM. For those of you new to our experience, the MIBG scan is a radioactive who-zi-whats-it (yes, that’s the technical term) that attaches itself specifically to neuroblastoma cells. It’s usually the best way to see if there’s any disease in the body. It was long… 90 minutes… and unlike Colorado they didn’t periodically stop to let Ben get the wiggles out. That’s a LONG time for an eight-year-old to stay still so we had some big struggles with this morning.

After, we needed to have a spec CT done. I didn’t know what this was, but I guess it’s something that every new MSKCC patient has to do. They didn’t account for it in Ben’s schedule of events, so this little 30 minute scan threw the rest of the schedule off. I have to insert a complaint here, I AM NOT a fan of the receptionist in the radiology department. For those of you who remember, I also had trouble with the radiology receptionist in Denver. I’m thinking that my entity and the personality that embodies all radiology receptionists are just natural enemies. Sort of like anyone born in the year of the monkey should avoid anyone born in the year of the tiger. It’s just a fact that cannot be avoided.

After the spec CT, Ben had to drink the contrast for his CT scan. He did a great job drinking the foul-tasting elixir in record time (since we were running behind) and headed back to radiology. Usually, this is a very speedy scan, but this one took about 25 minutes. While standing behind the thick plate glass watching my son move in and out of the large, circular machine, I listened to the staff debate the new MSKCC dress-code for staff members. I learned a lot about what would pass as a proper shirt to wear under scrubs and was relieved to hear that all female staff are required to wear a bra.

Then we headed back up to the Oncology floor. I need to throw in here that this is the MOST confusing building I’ve ever experienced. Different elevators go to different floors and you have to land on Michigan Avenue at precisely 1:47 in order to catch the magic train that takes you to the town that may, or may not, have a bus that will take you to the oncology floor. Okay, I made that up. But it is pretty darn confusing. Next time I’m leaving a trail of spray paint.

They were waiting for us upstairs so they whisked Ben back into the procedure room. I told them that had they equipped us with a MSKCC GPS unit, we would have been a bit earlier. I had a minute to chat with Bean before they sedated him. He was nervous. He kept hugging me and saying how he wished that none of this had ever happened to him. Me, too, Ben. Me, too. The docs gave him a bit of propofol (yes, the Michael Jackson drug) and he was out. I gathered my stuff and left the room, walked out in the lobby, and cried a little bit.

I settled in with a magazine and looked at pretty pictures – that was all my mind was good for at that particular time. Moments later, the doc came out and told me that Ben tolerated the procedure well. Once he woke up they would bring him to me. For those of you who need a refresher on what the bone marrow biopsy is, they take a giant needle, push it into your “butt dimples” and take out a cross-section of bone. Here at MSKCC, they also take samples from the front hips as well. So, four ouchies instead of his usual two. This test is used to find out if there’s disease in his bone marrow, which we DO NOT want to see. It makes treatment so much more difficult. When he was first diagnosed in 2004, he was loaded with disease in his bones and bone marrow… so far this time he’s had no evidence of disease in his marrow. Whew.

The nurse brought my sleeping baby out to me in the lobby. He snuggled into my arms as I sang to him. He likes it when I sing to him. He slept for about half an hour resting comfortably in my arms.

Then we met with Dr. Kramer. I’m thinking I love her. She’s very kind and patient and adores Ben (who doesn’t?). She said that his MIBG scan is NEGATIVE (yay!) but his CT scan still shows a spot (darn it all!). This means that we will have to come back to NYC in a couple of weeks for Ben to have surgery with the famed Dr. LaQuaglia. He is the absolute BEST. If there’s something in there, he will find it and excise it.

Then, I stole a wheelchair and rolled Ben back to the RMH since walking would be a challenge for my sedated, aching, dilaudid-fueled kiddo.

Tomorrow, we’re going back to Colorado (unless we get snowed in). Monday afternoon we will go back to Denver Children’s and start a very low dose of chemo just to ensure that the crazy spot they found on the CT scan doesn’t grow before Dr. LaQuaglia can get in there to remove it. We’re thinking there will be about three weeks before we’ll get in for surgery. Then, after he recovers from surgery they’ll hit him with the high dose chemo that will make him sick as a dog and knock out his precious peach fuzz that is slowly growing back in. Then, once he rebounds from chemo, we’ll start the 3F8 antibody. Then he’ll be all better. Forever.

Currently Ben is trying to get comfortable. He can’t lay on his back and he can’t lay on his stomach due to “the holes” he had drilled into him. That’s what he keeps telling the rambunctious Madzilla, “Be careful! I have holes in me!” If the weather holds out, tomorrow we’re going to go to Chinatown and maybe see the Statue from the Staten Island Ferry. Or we’ll just save it for next time.

Thanks for all the love and prayers, friends. We sincerely appreciate your support and the fact that you muddle through my musings to glean a bit of information about the Fabulous Bean.

More later. 🙂

“The Day the Music Died”

Today in history, February 3, 1959, marks the tragic airplane crash that took the lives of Buddy Holly, Richie Valens, and the Big Bopper at the peak of their musical careers. While I was not in existence at this point in time, being a rock and roll music aficionado dictates that this event has impacted me on a profound level. Plus, I love the Don McLean song “American Pie”, which commemorates the tragic event. I know this song by heart and can even strum a bit of it on the guitar. It’s always a hit around the campfire.

While the events of what happened in 1959 are, indeed, tragic, my sorrow surrounding this event is completely overshadowed by my immense joy. We learned today, February 3, 2010, that our fine young son, Benjamin, is in a good position of being CURED of this whole neuroblastoma mess. It’s going to take a while and there are some steps we weren’t expecting, but the overall outcome should produce a “long-term-on-earth” Ben. The minute Dr. Kramer made this statement, the tears started rolling. THANK YOU, JESUS!

Admittedly, I’m not crazy about this New York City place. I might reach a certain comfort level in time, but for now, I feel completely claustrophobic. I’m more of a Wyoming girl – preferring a total population of 500,000 compared to this itty-bitty island with its millions of people and crazy drivers. Someone give me a paper bag. I need to hyperventilate.

So, this morning we arrived at Memorial Sloan Kettering Cancer Center (MSKCC) to meet with Ben’s treatment team. First, we met with the financial guy. Then we met with Ben’s social worker. She is in charge of our Ronald McDonald stay and helping us apply for financial aid. Then we met Dr. Kim Kramer. She examined Ben and chatted with us at length about her thoughts. She said that since Ben relapsed so late after initial therapy (four years after being declared to have no evidence of disease) and the fact that it came back in just the one spot with no bone marrow involvement, she believes that this 3F8 therapy will CURE MY BEAN!!!!! Someone give me a paper bag. I’m hyperventilating (in a good way).

So, tomorrow Ben will have an Echocardiogram and an MIBG injection. Then Friday he will have his MIBG scan, a CT scan, and then a four point bone marrow biopsy (which takes a cross-section of bone from the front AND back of the hips. He’ll be sedated for that last part and probably be a bit sore for the rest of the day.

What will come next depends on the outcome of his scans. If he has a little bit of disease left over, he’ll be scheduled for surgery (with Dr. LaQuaglia here in NYC), a round of high dose chemotherapy (in Denver), and then start the 3F8 antibody therapy AFTER he recovers (back in NYC). If he has no disease at all, then he’ll be scheduled for a round of high dose chemotherapy (in Denver) and then start the 3F8 antibody (in NYC). We weren’t expecting having to put him through more chemo, but Dr. Kramer says that the antibody therapy will work better if he’s had recent chemo. It’s going to be a bummer though, because his hair has just started to come back in AND this is going to knock him out big time. I was hoping for no more hospital stays, but this round will mandate that we’re inpatient. OH WELL. HE’S CURABLE!!!!!! We’ll take the positives where we can get them.

So, we have a long way to go. But we want this antibody therapy to work so we’ll do what we have to in order to get this kid of mine back on the road to normalcy. It just can’t happen soon enough.

More soon. 🙂

It’s Groundhog Day

Old Phil saw his shadow today, which means six more weeks of winter! Good thing I’m back on the East Coast for this very important holiday since we don’t have groundhogs out west.

I thought the western relative of the groundhog would be the prairie dog, but I was wrong. It’s actually the marmot. I’ve never seen an actual marmot in any of my western outdoorsy activities, but I do own a few items from the Marmot mountaineering and skiing equipment catalog. I think my friends out west were hoping for the marmot to see his shadow today because it’s been a particularly disappointing season for winter sports enthusiasts.

But I digress.

I just popped a couple of valium in hopes that I’ll knock down this anxiety a notch or two. Or twelve. I’m borderline psychotic and driving everyone crazy. We flew into New York City today to do the preliminary testing for this next (and hopefully final) phase of Ben’s treatment. I’m a little less than pleasant right now. There are many extenuating circumstances as to WHY I’m less than pleasant, but I admittedly always get anxious at the start of a new phase for Ben and then the ever-present “scanxiety” that looms over my head during scans, which are set for this coming Friday. Just thinking about it makes me want to throw up. C’mon, valium. You can kick in anytime.

I think we’re all a bit tired. Or should I say we’re all exhausted. We made a last minute decision to travel to Ohio to hit two fundraisers for Ben this past weekend. The first, the Snuggie Pub Crawl, was so much fun. Ben and Madeline’s Godparents (Aunt Patty and Unkie) put together a really fun event, and yes, wearing a “snuggie” was required. It was great to see so many of our friends and they were so glad to see the kiddos. We are so blessed to have so much love and support. Aunt Patty and Unkie ROCK! As soon as I get pictures, I’ll be sure to post them.

Then Matt stayed behind with the kiddos while I zipped out to Ziggy’s in Pataskala to meet up with fellow WMHS-ers. It was simply amazing. I laughed, I cried, I had plenty of cocktails, talked about what’s next for Ben, and caught up with classmates. It was a much needed break AND I walked out with a big bucket of cash (total for both benefits to be announced). Thank you to my high school “peeps” for not only doing some fundraising for the Bean, but making time to meet me while I was in town, getting your “hearts on” for an excellent cause, and just plain old taking great care of me. ❤ Y’all are the BEST!

So we got home to Denver yesterday evening, did a load of laundry, and then packed again for our New York trip. We left at 8:45 AM this morning. Whew. I have to give a shout-out to Janet for hooking us up with buddy passes… Janet, our experience flying Frontier has been nothing short of incredible. Thank you, thank you, thank you.

After our very short “home layover” in Denver, we got on another plane heading back east. We landed at LaGuardia in NYC in the early afternoon. Can I say that I am less than impressed with this airport? I was thinking snazzy, metropolitan, and hip with everyone drinking cosmos and wearing haute couture. Boy, was I ever wrong. It was dirty. Dingy. Had a slightly scuzzy feel to it. Yuck.

Then, once we collected our bags, we made our way out to the taxi stand to take our $32 trip into the city (which I would gladly pay again because I will NEVER drive in Manhattan. EVER). As we were standing in line for our taxi, Ben leaned into me and whimpered a bit. He said that he didn’t have good feelings about this new place because there were so many horns honking. I told him that I had to agree. Way too noisy, way too fast paced, way too much. I’ll take my wide-open spaces over the hustle and bustle of the city any day.

We had the privilege of traveling with Shing Ho, Medallion Number 1F23. He was kind, but I felt like the stereotypical tourist because no matter how hard I tried and how many times I asked him to repeat himself, I could not understand a thing he was saying. I just kept throwing out random statements hoping that I would eventually answer the question he was asking. He still took us where we wanted to go despite my “Excuse me’s” and “Would you say that again, please?”

I am a terrible backseat driver. And I do think this taxi ride was one of the worst things I’ve ever experienced. I applied my “brakes” every 30 feet and had a panic attack as Mr. Ho nearly rear-ended a mini van. Then he tailgated a school bus. Then he swerved in and out of traffic. I finally just had to focus on something else other than the road or I knew I would have a coronary. And the HORNS. Constant blaring. There was never the friendly “toot of the horn” that most of us learned in our driver’s education courses. When they honk, they lay on it. A person with low self-esteem could never exist in such an environment.

So now we’re here at Ronald McDonald’s House. It’s a pretty nice set up for the most part. Very close to MSKCC and there are restaurants as far as the eye can see. I’m sure we’ll have fun exploring while we’re here… we want to see the Statue of Liberty and Times Square and all the “big stuff”. We’re planning to see some big sites after meeting with his treatment team tomorrow.

But for now, I’m waiting for the valium to kick in to put me at ease. I just can’t take the stress (and a car ride certainly wouldn’t help at this point!) I just want my kiddo to be done with all this hooey.

Thanks, my friends, for all the LOVE and SUPPORT you’ve shown to me and the fam… I’d be lost without you. Feel free to send me encouraging messages to keep my sanity. It’s stretched pretty thin right now.

More later. ❤

Oh yeah. We can get mail here. Our address is:

Ronald McDonald House, 405 East 73rd Street, New York, NY 10021 – Room 505. We’ll be here through this coming Sunday so feel free to drop off some mail. I do have to ask that if you plan to send a little toy or treat to Ben that you should send a little something for Madeline, too. She is especially struggling right now. xoxo

It’s “Cheese Day”

I’m not well. It’s a long story – and of course I’m going to tell you all about it – but it ain’t pretty. So, in lieu of cheese day, I’m going to talk about my physical woes. First, though, I’m going to update you on the Amazing Bean. That way you can get an update on him and then decide if you want to come with me on my “journey”.

Okay, here’s the scoop. Ben just finished day seven of radiation therapy and has seven more days to go. He’s half-way there! So far, he’s taking it like a champ. I’m finally getting a bit more comfortable with the procedure and I actually watched him on the monitor this past Friday. He lays perfectly still and does as he’s told. He’s such a good boy. Seeing how he handles it so beautifully certainly helps calm my nerves of him being in that room completely alone as he gets zapped with radiation.

Ben will finish these treatments next Friday, January 30. We finally got information from Sloan Kettering on when we’re going and what we’ll be doing for his preliminary testing. We’ll fly to NYC February 2, get set up in the Ronald McDonald House and then start our onslaught of meetings with Ben’s treatment team. We’ll meet with the finance people, the doctors, and hopefully crash Al Roker’s set. (Just kidding. I have no interest in the Today Show.)

Then, Ben will do scans that will hopefully show him to have NO EVIDENCE OF DISEASE, get bone marrow biopsies done, and all that non-fun (but necessary) testing hooey. He will have to be sedated for his bone marrow biopsy, so we’ll stay overnight to let him rest. I’d really rather not make him do anything under sedation (remind me to tell you about the “Hope on Wheels” event sometime… probably our most comical post-sedation story to date). So, we’re planning to leave NYC on Sunday so we can have Saturday to do some touristy things. If you have a favorite thing to do in NYC (legal AND kid friendly, that is) please let me know. I’m taking a poll.

I’m sure we’ll learn when Ben will start his actual antibody therapy during this initial testing phase.  He will be receiving actual MOUSE antibodies – not humanized like they were during his ch 14.18 therapy at Nationwide Children’s in Columbus. It will be painful. He will be on morphine or some other painkiller during infusions. Hopefully he won’t have any allergic reactions to the antibody… hives, rashes, etc. I continue to hold on to the premise that he’s been through enough already, he doesn’t need more.

Okay. So, this past Friday I had trouble going, ahem, number 2. I’m usually a very regular person so this is not a normal experience for me. I haven’t been taking the best care of myself (I’ll forget to eat or take my meds, stuff like that) and I imagine the high level of stress and lack of  daily upkeep has begun to take its toll. I mean, I’m showering and stuff – my hygiene is a-okay – I’m just forgetting to do the other things I normally do. So, Friday I’m miserable. Saturday, I’m even more miserable. Nothing’s moving and I start having immense pain and copious amounts of blood. We drop the kids at our friend’s house and off to the ER we go. (Of course it had to be the ER, because we just needed to pay that excessive co-pay).

So, they take me back right away. They hook me up to some fentanyl, which I DID NOT like. In fact, that’s what I kept saying, “I don’t like this! I don’t like this!” The nurse said, “Oh, honey, this is what we call ‘being “HIGH”‘. My response was “This is in no way, shape or form, anything like being ‘HIGH'” (not that I know anything about how being ‘high’ truly feels – although I am a graduate of Ohio University – I think I took a class on the effects of marijuana). Anyway, I’m sure they made note of my statement in my chart. It might read something like this: “Patient states that fentanyl is not her usual drug of choice…”

Not my drug of choice...

The doctor took me off the fentanyl, gave me a most unpleasant exam, and immediately said that I had thrombosed hemorrhoids that would require surgery. Surgery? Really? Go figure. Now, it is not uncommon for older people, especially women who have experienced childbirth, to accumulate a hemorrhoid or two. In fact, I had a procedure called IRC a few years ago (administered by someone I went to HIGH SCHOOL with – of course a humiliating situation had to be made worse by having my bottom intimately viewed and treated by one of the smarter people that graduated from Watkins Memorial). But my current situation was way out of the realm of your basic hemorrhoid. Of COURSE I would get an acute case, because I tend to go ALL OUT. After all, if I’m going to do anything, I usually go full-throttle. Whatever.

So, me and my butt went home to rest. The doctor did give me some percocet (since I am allergic to the wonderful vicodin). I spent the rest of Saturday and all of Sunday dazed and confused. Monday was a holiday so I rested most of that day, as well. So between the grogginess of pain killers (much needed) and some stuff called “proctofoam”, you can guess how exciting my three-day weekend was.

Tuesday I went to a specialist (how does one ever arrive at such a specialty?) He was a very kind man. Terrific bedside manner AND I had NEVER met him before! He told me that he was, unfortunately, going to have to give me an exam. I told him that I expected as much given the circumstances. But first, he asked me about my family health history. This depressed me even more. My son has cancer. I had cancer. My mother has a defibrillator/pacemaker thingy AND has had a stroke. My father’s health is unknown but I’m sure his former two-pack-a-day habit hasn’t served him well. My half-brother is HIV positive. My half-sister, thus far, has escaped any major medical trauma but is contemplating plastic surgery. I would, too, if I had her money. Call me jealous. Then, after relaying all of this depressing health history, I had to drop trou.

Immense pressure followed by severe pain and a few “hmmm’s” from the doctor ended with the announcement that I had been misdiagnosed at the ER! Hooray! No surgery! But I did have a pretty severe tear (honestly) and with a treatment plan that will add copious amounts of time to my daily “beauty regimen” puts me back in a position of having to care for myself in a more consistent manner. I have pills and fiber and milk-of-magnesia and packets of colace and creams to apply. It’s like a spa day for my bottom. At least that’s what I’m telling myself. I’ll have the most pampered butt in town.

I do have to say, though, I was prescribed nitro glycerin for daily application. There is only one place in town that mixes this tricky concoction, and that place is called “Todd’s Pharmacy”. I have to admit, when the doc told me I could only get this from “Todd”, I was thinking we were headed off to a shady part of town to look for an old VW Vanagon sitting in the middle of a parking lot with “Todd’s Pharmacy” airbrushed on the side. This was not the case. “Todd’s” is an honest-to-goodness old time pharmacy. I was relieved. Because if there were any gunshots at this Todd’s place, I was in no position to run anywhere. It would have been more like a clenched-bottom hobble. Small miracles. I’ll take ’em.

Long story short, I’m going to live. I’ll go back in three weeks to see if it’s healed. Thanks for listening and I hope it wasn’t too terribly offensive. I’m just at the point where I have to laugh at this stuff.

Oh yeah, and the transmission went out on the van. Emergency room co-pay, travel expenditures for Ben’s treatment AND $1,800 in van repairs all in one weekend! Good times.

Percocet, please.

It’s “Make Your Dreams Come True” and “Blame Someone Else” Day

“Give us any chance, we’ll take it. Give us any rule, we’ll break it. We’re gonna make our dreams come true. Doin’ it our way.”

Ah, Laverne and Shirley. I loved that show. Just a couple of average girls looking to make their way in this crazy world. Working in a brewery, looking for love, fending off crazy neighbors. Normal. And they had a great theme song.

What would it take to make my dreams come true? I guess I’d have to sit down and make a list of what my dreams really are. They’ve changed over the years – and some of them I’ve attained – only to find that it wasn’t what I thought it would be. Usually, I’d learn that the “let-down” I’d experience after achieving a certain “goal” was because I realized that they weren’t MY dreams, I was doing it for someone else. Trying to make someone else proud of me, when I should just be proud of myself.

The greatest (and most expensive) “dream” that I chased without really and truly wanting it was my MBA. I did this for my ex-husband’s family (who were mildly embarrassed that I had a degree in social work but was a bank teller and had aspirations of being a massage therapist). So, I started off as a superstar student and as I went along I discovered that I was NOT interested in the world of big business. So I thought I might use my degree to focus on non-profits. And I learned that I didn’t really like that either. I just don’t like the business aspect of any business. I’m not a negotiator. I’m not comfortable with confrontation. I don’t like to sit in meeting after meeting, discussing synergies or paradigms or core competencies. I like to be inside the box. And I certainly don’t like motivational posters.

Well, with the exception of this one:

So, what are my current dreams? My main dream right now is to find an immediate cure for cancer. Particularly recurring neuroblastoma, since that is the nuisance trying to keep my son from formulating his own dreams. But I’m not a doctor. I don’t even play one on TV. And there ain’t no way will I start medical school since I still have debt from my unused MBA – a student loan I defer year after year just because I don’t have the money to pay for it. Damn my ex-husband and his hoity-toity family (this is where I will use the “Blame Someone Else” Day). So, I have to leave this precious, all-important dream in the hands of others. I hope they’re having productive days in the lab instead of meeting with middle-management, sitting through sexual harassment seminars, and learning more about their core competencies. Find a flipping cure already. Kids are dying.

Dreams. I have a lot of them in my waking moments that I’d love to achieve but at this time it’s just too much to think about. My most pressing dream is to just get through this day. To take my son to his radiation appointment and not hyperventilate when that big door slams shut, forming that impenetrable wall between me and my precious eight-year-old as he gets zapped with radiation. I dream that I can get the laundry done. Clean the cat box. Maybe do a craft or two with my five-year-old. My immediate dreams are not lofty but wildly important nonetheless.

But someday, I will make this world a better place. And whether I do that by writing a heartwarming best seller (preferably an INTERNATIONAL best seller) or just being the best mom to the two greatest kids in the Universe, well, what does it matter? I’m doing my best. And I’m proud of that.

The “Feast of Fabulous Wild Men” Day

I dug around a little bit trying to find information on what this holiday is truly about but came up with nuthin’. So I guess I have to wing it.

All I can imagine is a large table surrounded with manly, muscle-bound men, boldly laughing with their comrades, tearing through gigantic turkey legs and drinking large mugs of frosty beer (kinda like the “Gaston” character from “Beauty and the Beast”, but not in cartoon form). My initial thought isn’t “Mmmm, look at all these gorgeous, studly men,” it’s more like “who’s going to clean up all this mess?” or “You’d be a lot more handsome if you’d wipe the carnage of turkey leg from your beard.” Kinda takes the romance out of the feast of fabulous wild men.

I have a list of Hollywood Stars that I call my “Top 10 Kissy-List”. This list is comprised of the top 10 movie stars that I wouldn’t mind locking lips with. I guess I should state that I used to keep such a list. Honestly, I haven’t updated it in quite a long time. Either I’ve grown up and have lost interest in such things or I’ve simply had other things on my mind. I’ll go with the latter.

This list has four permanent residents and then six who cycle off and on, dependent on recent video viewing history or any new-comers to the scene. The four who always stay put are: Johnny Depp, Ben Stiller, Harrison Ford and Paul Newman (there is no requirement on whether they are living or not – and since I have no real opportunity to kiss any of these people it doesn’t matter if they’re currently alive or simply with us in spirit. Just to be clear, though, I won’t kiss a dead or decomposing person, no matter their status on my kissy-list).

Ben Stiller, you ask? Oh, my. Yes. He is adorable. He is hysterically funny. And despite the fact that his body is probably really hairy (I’m just guessing) he seems to be the type of guy that you would do really silly stuff with. And I love the idea of that. I love to be silly. As for Harrison Ford, I’d just like to have an entire conversation pretending to be Chewbacka to his Han Solo. Johnny Depp? Well, what can I say? He is, after all, the current sexiest man alive (according to “People”) and probably doesn’t allow turkey leg carnage to live in his beard for long. And Paul Newman. *Sigh*. Sexy. Not to mention the Founder of the Hole in the Wall Gang camps for critically ill children. I just want to know what his aversion was to the tune “Lady of Spain” ( If you get this reference, you TOTALLY rock.)

My silliness is a trait that I’m missing these days. It still shines through, usually at completely inappropriate moments or during a high stress situation, but I’m not able to pursue my silliness to its fullest extent. Remember that book “Don’t Sweat the Small Stuff (and it’s all small stuff)”? Well, I’m thinking the writer of that book never had a child with cancer. There’s just no way that I can view my son being bullied by a ridiculous disease “small stuff”. I try to be positive but there’s no denying the fact that this is a life-threatening illness. And often times my silly attempts to inject humor into this horrific situation just seem ridiculous. It all seemed ridiculous yesterday as I had my major melt-down at the hospital during Ben’s first radiation session. I tried to be silly for Ben’s sake. I tried to be silly to relieve my high anxiety. I tried. And seriously failed. It’s just too serious a situation to be silly.

I hated it. Radiation is horrible. The re-marking of my son wasn’t so bad. After all, I had already seen him go through that before. It was the actual session itself. Taking him into a big room with a gigantic machine. Watching them line the lasers up with the marks they’d just put on him. Telling him to stay as still as possible. Looking at his teeny-tiny frame laying in his personalized body mold (hey! I wonder if we get to keep that after therapy is over?) and watching him look around the room, taking in everything in this new environment. He was particularly concerned about the hole in the machine that was placed right over his head. It freaked him out a bit until we decided that the etchings around the perimeter of the hole looked like Legos. That seemed to calm him down a bit.

The hardest part was leaving him in that room. I leaned over to kiss him, he gave a soft whimper that I interpreted as “Don’t leave me”, and I was forced to put on a smile, straighten my back and say “See you in a bit!” with as much enthusiasm as I could muster. As soon as my back was to him, the tears started to fall. I walked out into the hall and sat where they directed me to sit. I watched people’s feet shuffle past. I heard voices murmuring. I heard machines whirring. I felt absolutely helpless. And completely sick. Then the door shut. A door that was as thick as a castle wall. Heavy. Impenetrable. Foreboding. Separating me from my baby. I knew he was scared. I was scared. And I couldn’t get to him. He was all alone. I honestly felt my heart crack.

My tears continued to fall silently. Me, sitting alone in that hallway. Holding in the tears just added pressure to my body. My lips swelled. My heart raced. My eyes stung. I wanted to run outside and shake with hysteria but then I might miss the moment that horrible door opened to reveal my little Bean. And I wanted to be right there to calm him. To calm myself. To touch him. To see that he was okay.

And when the red light went off and the door opened, that’s what I did. I raced in to my Ben. There was nothing noticeably different. He seemed to be okay. I lifted him up and carried him over to get his clothes. I continued to hold it in until I just couldn’t do it any longer. Then I shook. I cried. I could no longer muffle the sounds of despair. I felt horrible melting down in front of my son but the meltdown didn’t schedule this appointment. It just showed up. Rescheduling was not an option. And while the child with the life-threatening illness soothed his mother, the sweet release of pain took over.

I think my meltdown prompted Ben to have one of his own later. I always hate to see him upset but I think he needed to let go of some of his pent-up emotions. At bedtime, he started talking about wanting a normal life. He wanted to be just a regular kid. Go to school. Play with friends. Be normal. He cried. I soothed. He got mad about his little friends who have died. I just held him as he talked about it. Told him to let it out. Told him that he has every right to be mad and sad and anything else that he’s feeling. Then it came again. The question. “Mom, am I going to die?”

“Ben,” I started with a shaky voice, “just because a lot of your friends have died does not mean that you will, too. We will fight with everything we got. Do whatever we have to do. Go wherever treatment is available. Because I WILL NOT let you go.”

I will not let him go. It’s the fight of my life to watch him fight for his life.

Then we made plans to make a flip book of his hair growing back in. Each day, we’re going to take a picture of Ben. We’ll put all the pictures in order and make a little flip book to celebrate the return of his hair. We’ll make some copies and give them to kids on the oncology floor to help them see that their hair will most likely grow back in… just give it time.

Every little thing is gonna be alright. Ben’s hair will grow back in and with a major miracle, he will participate in next year’s “Feast of Fabulous Wild Men”. And the next year. And the year after that. And the year after that. Infinity. Because I’m not letting go.

It’s “Step in a puddle and splash your friends” day

My Colorado puddles are currently frozen. If this National day is always January 11, then the person who created this holiday must be from a country that celebrates summer during our winter. Or Yuma, AZ. ‘Cuz if you’re stomping in any of the puddles around here, all you’ll get is the sound of cracking ice.

That’s actually one of my biggest phobias – falling through ice. I’m terrified of it. When I lived up in the mountains, I had a boyfriend who would cross-country ski across Lake Dillon whenever there was a full moon. I never went. Ain’t no way I was ever going to ski across the lake, let alone try it out AT NIGHT. I think falling through ice and drowning would be the worst sort of death. Oh, who am I kidding? I’m not sure that any sort of death would be particularly exhilarating but the thought of being trapped under ice is horrifying to me. And any rescue effort would be slippery at best. Nothing to grab hold of. Nothing stable to pull you out. I’m hyperventilating just thinking of it.

Oh, okay. I’m hyperventilating for many reasons. I can’t sleep. Matt is snoring like a maniac. I can usually sleep right through that – even fall asleep to the sounds of his sinus issues if I can find any sort of rhythm to it. But tonight his snoring is very erratic. He’ll start a nice pattern only to stop… then nothing… completely silent… which leads to my questioning  “is he dead?”… and just as I go to put a mirror under his nose, SNORRRRRRE. And I suck in my breath, clasp my hands over my heart, and experience my own erratic breathing. I swear it’s knocking years off my life. I guess that’s better than being trapped under ice.

We’re all under a bit of stress. While chemo is over for Ben, we still have a long way to go. Radiation starts tomorrow. There are pros and cons to that. One of the biggest pros would be the probability that he will not have anymore long-term hospital stays since that stupid chemotherapy will stop making a mess out of him. He’ll start to grow his hair back. His little eyelashes will begin to come in. His incredibly expressive eyebrows will re-frame his beautiful brown eyes. He’ll be back to being my sweet little red-haired boy (I’m quite confident that his hair will grow back in its original color). I will be able to watch the wheels turn in his head while his eyebrows knit together, spinning out thoughts into expressions. His lovely, intelligent expressions. Things that most eight-year-olds don’t have a clue about. God love him.

Today I took Ben and Madeline bowling. Madeline was her easy-going self – rolling the ball from between her feet and then ending her performance with a disco move of some sort. Then Ben would take his turn – run like a crazy man from the very beginning to the very end (often setting off the “over-the-line” buzzer), watch the ball roll down and bounce off the bumpers only to turn and shake his fists every time he didn’t get a strike, which was every single time. And while I knew what was going on in his head – that kid is a perfectionist – an outsider wouldn’t be able to tell because he doesn’t have any eyebrows. I just can’t wait for them to grow back in. While things might not be fully back to normal in our crazy world, at least it will look like it when those eyebrows come back in. Isn’t it all about the aesthetics? Yes. Most definitely. Hurry up, eyebrows.

So. Radiation starts tomorrow. We have to go in an hour early in the morning because all of his marks from his simulation came off. We tried to keep him marked, but it’s been well over a month. Plus, his stint in the hospital over Christmas and how sweaty he got during his vicious fevers, well, there was no keeping him pristine. So he goes in tomorrow for re-marking. Then he’ll have his first session directly after. It’s just to the one area on his back and it’s not a super-high dose of radiation (which should make me feel mucho better about this whole radiation gig, but it doesn’t).

I might have said this already, but when Ben first met his radiation oncologist and they were discussing this portion of his treatment, Ben was astute enough to state “This radiation stuff sounds dangerous.” The doctor and his assistants all looked at me with shock and amazement. I tried to take credit for his intelligence but ultimately had to surrender with a shrug and say, “What can I say. The kid is smart.” His doc did explain to Ben that it was, indeed, a dangerous procedure, but that’s why they were marking him – to make sure they zapped only where it was needed. When we were leaving his simulation appointment, one of the radiation techs pulled me aside and said in all her years of working with children – even up to age 18 – not one child had made such a statement. Most of the questions revolved around “how painful are the procedures?” and how they would feel after the treatment. My Ben. He’s just too smart.

Ugh. Am I still awake? It’s currently 1:45 AM and I’m pretty sure it’s going to be a sleepless night. After all, I need to be up really early to talk with Ben’s treatment team in New York. Damn that two hour time difference! The way tonight is going, by the time I finally fall asleep, New York will be open for business. Might as well crack a Mtn Dew and settle in. Once this first day of anxiety is out of the way, I’m sure the rest of radiation will zoom by. Pray for minimal side effects, please. He deserves smooth sailing.

Normalcy. Oh, I long for Ben to have that opportunity. To be a normal boy. To grow that hair back in. To play with friends, dream of his future, make plans that aren’t flimsy and fraught with constant change due to sickness or treatments or appointments.

And to lean back with his face to the heavens, catching raindrops on his tongue, and splashing through the many puddles of childhood instead of slipping on this treacherous ice called cancer.

More later. 🙂