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. 🙂

It’s National “Run it up the flagpole and see if anyone salutes” Day

Happy New Year. Last month was extremely difficult to exist through, let alone be creative enough to post entries to my award-winning blog. Okay, so I’m not really winning any awards for my creative writing efforts, but Ben says I’m the best mom ever. That’s award enough for me.

I’ve toyed with the idea of making “writing an entry every single day” my New Year’s Resolution, but I’m of the mindset that if I HAVE to, then I won’t do it. I think they call that being passive-aggressive. Plus, today is January 2nd, so I would have to admit that I’ve already failed less than 48 hours into the new year. That’s no way to start off a new year let alone a new decade, so I will continue to post entries whenever I feel like it.

What other changes could I pursue for the new year? Well, I have plenty of poor behaviors to choose from, so it shouldn’t be difficult to find something to alter. After all, I just (within the past two minutes) washed down my anti-depressants with my daily dose of Mtn. Dew. I’m not a fan of coffee so, since college, I’ve fulfilled my desire to be caffeine-infused with one 12 oz can of Mtn. Dew first thing in the morning. It has to be a can. It has to be cold. But really, if I’m out (which I believe to be a National emergency) then I will certainly stoop to digging out a half-empty 20 oz bottle from under the car seat and inhaling like a crack-addict. I know. Sad, but true.

As I type, my ice-cold Mtn. Dew is exhibiting signs of stress. Beads of sweat are slinking down the exterior walls of the can, much like a criminal being questioned under harsh lighting. Oh, don’t worry, my love. You are my muse. You get me through my day. I will not give you up. You’re safe. You’re loved. I will never let you go. At least not until my teeth rot out from the copious amounts of sugar I ingest at your behest (yes, you command me to drink you) on a daily basis. But by that point, who cares? Like REO Speedwagon so eloquently stated in their 1981 power ballad, “I’m gonna keep on lovin’ you. Cuz it’s the only thing I wanna do. I don’t wanna sleep (mostly because of the high dosage of caffeine). I just wanna keep on lovin’ you.”

I guess there are other things I could change – like my passive-aggressive behavior – but I’m just so good at it. I am excellent at clinging to my emotional pitfalls yet run like hell from any positive reinforcement. I think this particular schism of the passive-aggressive disorder is called discontented negativism. I mean, I’ve worked so hard at being good at this particular trait… hey. Wait. That statement in itself should make me want to drop my disorder like a hot potato. I think I’ll crack another Mtn. Dew and ponder that.

I can’t change overnight what took 40+ years to “perfect”. This is why New Year’s resolutions are preposterous. We think “fresh start” or “clean slate”, when in actuality we get that opportunity each and every day. As we learned in the minor film classic “What about Bob”, we need to take Baby Steps. Thinking of the New Year as our launch pad to being a better person is setting ourselves up to fail. Telling ourselves we’re going to exercise more or write every day or learn Spanish or get organized or read all the classics or watch less tv or wake up earlier or pay it forward more often – just because it’s the New Year – is an exhausting endeavor. I think New Year’s Resolutions should be banned. Let’s run that idea up the flagpole and see if anyone salutes it.

But really, why change anything at all? As I’m sitting here in my t-shirt and flannel pants, hair pulled back in a messy pony-tail, yesterday’s mascara embedded in my 40+ skin, Ben says “Mom, you couldn’t be more beautiful.” Who am I to argue with that?

Happy New Year. Make today count.