It’s “Frankenstein Friday”

When I was a young girl I had a recurring nightmare that my family left me in a haunted house. It goes like this: my mom, dad, sister and I were in a car. We drove up a long driveway to a very dark and eerie mansion. Thunderheads were looming over the turrets and occasional thunder could be heard. We walked up to the door and rang the bell, but no one answered. My mom opened the door and we stepped inside. We start checking out rooms and somehow I got separated from my family. The next thing I know, I could hear the car starting. I looked through a boarded up window to see my family driving away without me! I pounded on the boards, screaming and crying for them to come back. The next bit is where the monsters come in. I turn around and see a werewolf. I start to run from it, and, of course, it chases me. Each time I turn a corner a different monster pops out until I’m followed by not only the werewolf, but Dracula, the Mummy, Swamp Thing AND Frankenstein. I get to the point where I’m exhausted and just stop running. I turn to them and say “Can’t we just get along?” They look at each other, some of them shrugging their shoulders as if to ask “what do you think?” to each other. They finally look at me and say okay. I have a feeling we all lived happily ever after.

I can still relive this dream with a vividness that astounds me. I can see their expressions. I can feel how out of breath I got. Now, I could try to decipher this and state that my dream has to do with abandonment issues, etc, but why ruin the fun of having your very own family of monsters? Wait… maybe that’s what this dream is about? I have a family of monsters! Ha! That’s funny. I’m going to think about that for a while.

So. About Ben. Many of you have been asking “what’s next”? Well, here’s what I know. He is CANCER-FREE! Whoo-hooooo! And now that he has re-received the status of having No Evidence of Disease (NED), we’re all breathing a little easier. What does this mean treatment wise? Unfortunately, he’s NOT finished. We still have to travel to New York, but now we will be going every eighth week instead of every fourth. He’s still taking accutane on a schedule of two weeks on and two weeks off. He’ll still have to do shots before the next round of antibodies. He still has to endure pain. 🙁

Why? Because Ben is diagnosed as being “high risk” for relapse. This was a part of his original diagnosis and seeing how he did relapse – even if it was four years off therapy – there’s a high chance that he will relapse again. That being said, this antibody therapy that he’s been suffering through should be teaching his body how to fight any return of neuroblastoma cells. So, if one even thinks about forming then his cells should say “I’m coming to get you, Barbara” Okay, so that’s from “Night of the Living Dead”, but that’s how I like to think his healthy cells would approach any newly formed NB cells if they were to return. Eat ’em like a zombie eats brains (hey, I’m just trying to stick with the Halloween theme here).

That being said, our next trip to NYC will be mid-December. Yay! We’ll get to see the tree in Rockefeller Plaza! Maybe we’ll go ice skating! I think they should put lights on the Statue of Liberty, but I’m sure that would cause an uproar. She’d look so pretty, though.

So, we’re returning to a little bit of normalcy. It’s not ideal, but this is the life we have.

It’s better than living in a haunted house with a bunch of monsters, though.

It’s “Wild Foods Day”

I thought this was a day to celebrate sweetbreads (the thymus gland and pancreas of a calf) or chitterlings (hog intestines), but it is not. Whew. I would be thoroughly disgusted if I had to write about that. No, Wild Foods Day is a celebration of foods found in the wild, like berries and mushrooms. If you’d like to learn more about what you can eat in the wild, click here: http://www.herbvideos.com/ewpindex.htm

I love to spend time outside. I like to camp (or, at least I did until my back started getting old). I love to hike. I have to admit, though, I’ve never had to resort to finding plants and berries to sustain me. I always take a nice trail mix along, loaded with nuts and m&m’s because there’s nothing like that growing on trees. But it would be good to know what I could eat if I were ever lost in the wilderness. As it stands right now, as soon as my trail mix ran out, I’d be in big trouble.

The only time I was worried about being exposed to the elements was back in the late 70’s. No, I’m not talking about disco. There was an event where my step sister and I decided to go sledding at Mound Builders park near Newark, Ohio. The mound builders, for those who don’t know, were Native Americans who built mounds in shapes like serpents, etc. Often, the mounds were used as burial grounds for their dead. Why my sister and I decided to sled on top of dead bodies, I’ll never know. But it’s a nice tie-in for Halloween, which is just around the corner.

Anyway, Stacey and I headed out to walk down to Mound Builders park. She was dressed from head to toe in a warm snowsuit and snow boots. I had on jeans and what turned out to be an extremely inferior pair of shoes. See, I was visiting my dad and I didn’t have the proper equipment to go on such an endeavor. But, I was about nine or 10 years old, so such things didn’t matter… until it was too late.

We sledded over the dead Native Americans for about five minutes before I lost the feeling in my toes. I started voicing minor complaints to Stacey as she surfed over Central Ohio’s lost Native Americans with an excited “Whee!”. I trudged back up the hill even as the feeling drained from the rest of my feet. I flew down the steepest part of the mound with a less than excited grunt of pain, as the feeling from my hands and fingers left me.

I stopped at the bottom, still on my sled, and stayed there. Stacey, meanwhile, was gleefully trudging up and flying down, shouting out for me to join her. By then, my face was frozen, which made forming words impossible. “Ugh”, was the best I could muster.

I willed my body to get up and start digging a snow cave. I’d heard somewhere that this is where little nine-year-olds without proper snow gear went to die, so I thought that before my entire body froze, I should start digging. I scooped away enough snow to bury my legs and torso, said a prayer, and prepared myself to join the dead natives. I’d built my own mound. Well, until the spring, anyway.

Stacey eventually came over and woke me up out of my pre-death slumber. She was rosy cheeked and a bit sweaty from her day of fun. Meanwhile, I was a human popsicle tinged with black on my extremities and cheeks. Oh, okay, that bit was just for added drama.

I did have a hard time getting up. Stacey pulled me up with a force that should have shattered my frozen bones. She walked ahead of me, leading the way back to my dad’s house, which felt like it was a million miles away.

Fortunately, once we hit the road, Stacey’s grandma drove by in her meticulous white Cadillac. I could see her as she spotted us, running after her and waving her down. I saw the look in her eyes for one split second that she was trying to decide if she should pick us up, seeing how we were going to get her red leather interior wet with snow. I ultimately think she took pity on me in my wet jeans and thought that this would be her good deed of the decade. She stopped to let us in while I wept with joy. I tried to fold myself into her pristine car that was deliciously warm, and knowing how she felt about her “baby”, I was worried about getting snow inside. However, when I heard ice cracking and realized it was my pants, I quickly forgot about her needs and focused on my own.

Stacey’s grandma ran me a hot bath, which technically hurt more than being frozen. But it did eventually thaw me out. I survived!

I’ve not gone out since then without all the foul-weather gear I can get. I kinda look like “Randy” from “A Christmas Story” whenever there’s a chance of snow. Don’t get me wrong. I love the snow. I live in Colorado for crying out loud. But I’d much rather be warm – even in the quickest journey out in the elements – or if I’m searching for mushrooms and berries out in the wilderness.

Poor Little Yoshi

Yoshi is my dog. Well, technically, he is Ben’s dog, but seeing how the little guy follows me everywhere, I claim him as my own. He’s an adorable little fella – half Shih Tzu and half Havanese – and just a little ball of sweetness. He has a bark that’s bigger than he is (all 10 pounds of him) and he loves to eat paper, fetch tennis balls, and groom our cat, George. He’s an awesome dog.

Isn’t he ADORABLE?

So, why is this post titled “Poor Little Yoshi” you might ask? Well, because the adorable little pup is getting neutered today. Go ahead, men. You can cringe.

I woke up before the crack of dawn to get him to the site of the mobile neutering clinic. I’m not kidding. The Denver Dumb Friends League has a mobile unit that travels around the metro Denver area holding these spay/neuter clinics for pets that have owners with no money. We certainly fall into that category.

See exhibit A for proof of the mobile unit:

There’s always a GIGANTIC line at these “get-togethers”. I know this because I was turned away from one of these mobile sites a couple of weeks ago. Getting up at a ridiculous hour to beat the crowd was mandatory if I wanted to have access to the low cost neutering clinic.

As I mentioned earlier, the mobile unit travels around the metro area giving people in a variety of locations the opportunity to take advantage of the clinic. They have several a week, but it’s not always in a convenient location. The clinic I was turned away from a couple of weeks ago was at a strip mall in Aurora (the city I live in), so it was disappointing to miss that one. Of course, there were a couple of Aurora clinics while Ben and I were in New York. Seeing how the next Aurora clinic is weeks away, I had to travel a bit this morning to Denver Proper, about 30 minutes from the house. The locale was NOT a strip mall this time. It was… wait for it…

I’m not kidding. We all had to line up outside of a McDonald’s in a not-so-nice area of Denver. I wasn’t very excited. It was cold. Yoshi was shaking. I was tired. The parking lot was filled with what had to be at least 50 dogs. And, of course, I stepped right in a colossal pile of dog poop.

After two hours of waiting and scraping my right foot against every curb available, Yoshi finally boarded the mobile unit. I felt a little bit bad about what was going to happen to my fine young pup, but it needs to happen. He seems to think he’s a big dog and had the attitude to go with it. I left a trembling Yoshi in a cage on the big bus. He whimpered as I exited, which was a very tough moment for me.

But even tougher was getting back into my van after two hours out in the cold. I turned my heater on high and started to relax. At least until the smell of heated dog poop wafted up from the bottom of my shoe. I tried with all my might to air it out on the way home, but I couldn’t get past the smell. I also couldn’t get past that it was still only eight o’clock in the morning. This was shaping up to be a painfully long day.

I’m currently waiting to hear from the mobile unit as to when I can pick up my emasculated puppy.

So that’s the exciting adventure of Yoshi going to get neutered at McDonald’s. I highly advise you to avoid the Chicken McNuggets.

It’s “National Brandied Fruit Day”

Why? Nobody knows. It’s posted as a National holiday but there’s little information available and no official proclamation making it a “National” day of celebration. If you like Brandied fruit then today is your day! Have some for breakfast!

The only brandy I’m a fan of was the boy named Brandon, aka Brandy, who lived across the street from me during my formative years. Brandy’s sister, Heather, was one of my dear friends growing up. I spent a lot of time across the street at their house, doing manicures with Heather’s mom, disco dancing in their living room, and sleeping over more nights than I could count. It was great fun.

Brandy, who had Down’s Syndrome, was a couple of years older than me. He was simply adorable. Brandy was a pinball wizard (complete with his very own pinball machine, another reason I LOVED to hang out at their house), an Olympic athlete with many medals in his collection, and a master of swear words. In fact, one hot summer afternoon, Brandy and I sat on the cinder blocks behind my house, kicking our legs against the blocks and whispering swears back and forth to each other, giggling away at our “being bad”. And I quickly became an overachiever in mastering the art of swearing, even to the point of earning a detention in school for my skills.

But back to Brandy. He was a great kid. He was funny. He was particular (one week he liked only the pizza topping and the next he liked only the crust). He was sweet. He was a very protective older brother to Heather. And when I had just entered my preteen years, he died. I’d lost a friend the summer between fifth and sixth grade so Brandy’s death wasn’t my very first experience in losing a friend, but it was certainly the most traumatic. I’d known Brandy for as long as I could remember. I watched him get on his school bus each morning. I’d played pinball with him countless times. He taught me all my swear words! The day I learned of his passing I said the Queen Mother of swears, just for him. I could imagine his sweet smile and crinkled up nose as he snickered at my “badness”. That one was for you, good buddy.

Oh, how far my life has come since losing my neighbor. His sweet life helped shape who I’ve become. He taught me that I ultimately wanted to help people less fortunate than I am. Little did I know that it’s pretty darn difficult to be in a more trying situation than I’m finding myself these days, what with my son’s illness, my daughter’s self-esteem issues, having an estranged spouse, being financially strapped with the inability to get a traditional job thanks to a) my many years out of the job market and b) my erratic schedule. I’m having a hard time being able to help myself.

I’m trying so hard to count my blessings. I’ve got great kids. I have lots of friends who love me and would do anything for me. I’m a good person with a great sense of humor. I’ve got good stuff going on in my life but it’s been increasingly difficult to not let the crazy stuff get the better of me.

What would Brandy advise me to do? I think we can all guess. And be sure that as I’m flying over the country today, I’ll be swearing up a blue streak from New York City to Denver (to myself, of course). All the while, I’ll be thinking of Brandy’s sweet smile and crinkled up nose as we kick our feet against the cinder blocks and laugh at how bad we are.

It’s “Evaluate Your Life” Day

Heavy, dude. It sounds like too much of a chore to evaluate my life right now so I’m just gonna say my life is a big old sloppy mess. That’s the best description I’ve got.

Ben and I are in NYC until Wednesday. He finished up his fourth grueling round of 3F8 last Friday. The weekend was spent doing laundry, catching up on sleep and playing lots of video games. Ben had his 24-hour gaming marathon on Saturday. He played for 19 hours before falling asleep, but he made up the difference later Sunday while I was spending my $500 gift certificate at BCBG on 5th Ave. Ben sat and played his DS while I used my $500 on a pair of pants, a top, and a sweater. They are all very lovely, but I’ve never spent $500 on an outfit. Ever. It was a fun experience, though.

So, today was the first day of scans. Ben had to get his port accessed and drink nasty contrast for his CT scan. He did a great job drinking the contrast but as soon as we got to the hospital he threw it all up. We missed our 11 AM appointment and had to wait until 1 PM to get in for a scan. Mind you, Ben had not had anything to eat since the night before, so it was a long morning. Then Ben had to get the MIBG injection. I think they forgot about us in the waiting room because we waited for an entire hour before I inquired at the desk when we’d be going back for the injection. They called us back shortly thereafter, gave me the card that states Ben is radioactive (I’ll need this at the airport on Wednesday), and gave him the injection. We then took a walk over to the pet store, played with a long haired chihuahua and then came back to The Ronald. We’ve been chilling out ever since. Tomorrow, he does his MIBG scan at 11 AM and then the bone marrow biopsy at 2 PM. It’s going to be another long day.

While waiting for hours for Ben’s CT scan to take place, I struck up a conversation with a lady sitting next to me. I told her I liked her shoes. I was trying to take my mind off the scanning process and the fact that Ben was getting more and more restless from all the waiting. She looked over at Ben and said “I hate to see the little ones suffer”. Well, okay then. I guess we’re going to talk about cancer. Darn it all. Come to find out that she was there waiting for her 87-year-old father, Ed, who was just diagnosed with lung cancer. He went in for a routine heart exam a couple of weeks ago and learned that while his heart was fine, he, unfortunately, had the Big C. Today was the scan where they were going to be able to stage her dad’s disease and she was on edge. I let her talk. I let her get weepy. She told me about her dad and his gregarious nature. He’d lived an incredible life so far and he wasn’t letting this cancer diagnosis get in his way. I started to like this Ed character. Then I met his wife. She was beside herself with emotion. I watched her as the doctor came out and told her what was technically good news. She watched him with what looked like great concentration, shaking her head, saying “hmmm”, and crying profusely. After the doctor walked away she turned to her daughter and asked “What did he say?” Bless her heart. I’ve been in that same scenario. Trying to hear and not understanding. Trying to decipher only to get lost on step one when the doctor was already explaining step five. This whole cancer gig leaves the caregivers with a sense of severe shell shock.

Ultimately, it was touching to watch another family celebrate the life of their loved one. To mourn that the every day normalcy was over. To wonder what the immediate future held for Ed. For all of them. Ed was wheeled out on his gurney and we said our goodbyes. Ed’s wife hugged me and whispered “God is good. He’s taking care of your Ben.” I told Ed that I loved him as they wheeled him away. It was very touching and put quite a dent in today’s daily dose of cynicism that I usually unleash on the world.

So, Ben wants to snuggle now. Who am I to say no to that?

Love to everyone. <3

It’s “Sweetest Day”

Barf. I love made up holidays and center a large part of my every day living writing about these random celebrations, but I just cannot get on board with Sweetest Day. Is it because I’m not sugary? No. Is it because I don’t have a suitor who likes to give me lovey dovey gifts? No. It’s a dumb holiday solely made up for the people who cannot stand to go an entire year without a “love” holiday. I very well might be the only female on the face of the planet who thinks this, but I think that even Valentine’s Day is overdoing it.

I’m not against love. I’m just not a fan of perishable gifts. So flowers, candy, any of those things are just annoying to me. Don’t get me wrong. I love presents. I love little surprises. But if you’re going to bring me flowers, pick them yourself (as long as it’s not from someone else’s garden or from a protected stretch of National forest). And if you’re bringing me some candy, a box of Raisinettes or bag of gummy bears will suffice. I don’t want it to be in a big heart shaped box. The caramels are the only good pieces in those big heart boxes anyway, and the kids always seek those out first. All that’s left behind are many pieces with holes gouged in the bottom, leaking orange goo. Besides, love isn’t something that should be reduced to Valentine’s Day and Sweetest Day. Love takes place every day. It shouldn’t take a “holiday” to reinforce your feelings.

Sadly enough, it seems that we’ve reduced love to just that. So many people are so emotionally stunted that they cannot feel. I have to admit, I fall into that from time to time given our circumstances (it’s hard watching our “cancer friends” struggle along with us and sometimes lose their battle – I tend to try and separate from that emotionally) but LOVE -really and truly – should be celebrated daily. Right? Just do it. Not just today, but every day.

Ben and I are sitting here in the Ronald McDonald House playing video games. Today is the “Extra Life Gaming Marathon” and Ben has raised over $1,000 for the Denver Children’s Miracle Network. I have to admit, I was thrilled when I had to raise our original goal from $500 to $1,000. Ben received so many donations that he easily reached his new goal. I’m giving a shout out to all who donated here because your generosity has been overwhelming! THANK YOU! And for the one special donor who so generously donated (you know who you are)… Thank You. I have no way to contact you so I have to give you a special thank you here. That was VERY cool of you, extremely surprising, and very heartwarming. Thanks from the bottom of my dried up, no-sweetest-day-celebrating heart. 😉

Ben struggled so much this week. It was almost like he couldn’t catch up on his rest. Being second bed seemed to really mess up the entire day and he was restless for much of the week. Well, when he wasn’t in excruciating pain, he was restless. So, this 24 hours of gaming is well deserved. We’ve got our doughnut holes, some orange juice, a variety of chargers plugged into the wall, and many games to play. We’re in the zone!

I gotta get back to Bejeweled Blitz. I am DETERMINED to get over 400,000 today even if I have to play for the entire 24 hours. Check back often… I’ll post as soon as I reach it!

BTW, you can still donate to Ben’s page if you’d like: https://www.hospitalshelpingkids.org/ExtraLife/m.aspx?i=198893F5AB7DA77C4

Game on!

It’s “Pet Peeve Week”

pet peeve is a minor annoyance that an individual identifies as particularly annoying to him or her, to a greater degree than others may find it.

Minor annoyance? My pet peeves are not MINOR annoyances. They are anger-provoking, heart-stopping, seething-through-teeth issues that alter my every day life. I know you’re dying to know what my peeves are so here’s today’s Top 10 list of my pet peeves:

10. People who don’t appreciate “wide screen” movies. There is a HUGE difference in watching a movie that should be presented in letterbox versus the dreaded “pan and scan”. It’s like abridging something that should always be unabridged.

9. Unhappy people who wear “happy clothes”. Any adult who wears items of clothing with Disney cartoon characters on them… you must be ridiculously happy or I don’t want to see you in your Seven Dwarfs sweatshirt. I will feel sorry for Sneezy, Dopey, et al, if they have to live with and listen to you.

8. Condiment crud. If you use the ketchup, wipe off the top before replacing the cap. This applies to every condiment (yes, even tabasco). If the lid makes a crunching sound as I’m trying to dislodge the cap, you’ll have one very unhappy Sarah on your hands.

7. Toothpicks. Use it and dispose of it. Quickly. Don’t chill out with it hanging in your mouth. That’s gross.

6. Shower etiquette: do NOT blow your nose or leave your hair or leave the lid off of the shampoo. If you use my sponge, that’s an automatic death sentence. Do Not Pass Go. If I catch you violating my shower rules, I might throw my plugged-in hairdryer into the mix.

5. Litterbugs. Litter makes me bitter. Except spitting gum out through the car window. I think that’s okay. I like to think there’s a herd of deer out there that likes to chew gum. Or maybe a passel of possums.

4. Pens that have poor ink flow. There’s nothing more frustrating than trying to write a check, leave a note, scratch off something from your to-do list, or write the Great American Novel with a pen that leaves globs and gloops all over the paper (or, worse yet, your hands).

3. Kitchen fouls: leaving cabinet doors open, shoving pans and containers into cabinets to the point where they won’t close, and never clearing the microwave numbers after taking something out before the beep happens.

2. Being tickled. I hate it. It’s undoubtedly a form of torture.

1. Poor grammar/misspellings. I ain’t got no… She don’t like… I seen you… there/they’re/their… your/you’re… Kwik Stop… Krispy Kreme (although I’m willing to overlook this one for the pure deliciousness)… samwich… supposebly… expresso…. Spell it right, say it right and use proper grammar! It ain’t that hard!

This list changes often so check back to see if you’re on it. 😀 In an effort to provide a fair and balanced post, I’m going to list the Top 10 things about me that might completely peeve you:

10. I spit gum out through the car window.

9. I always need a favor.

8. I ALWAYS have a story and will often interrupt you to tell you my story.

7. I’m always late.

6. I apologize all the time. I’m sorry.

5. Do not leave me a voice mail because I will not listen to it. I will write down who called but delete the message. I hate listening to voice mail. I respond solely to email, texts or Facebook.

4. I can’t say the letter “R” vewy (very) well.

3. I do like my swear words. I wish I didn’t but the life I’m currently living is a breeding ground for foul language. I apologize in advance for my potty mouth.

2. I’m always moving. Fidgety. Hyper to a point. I tap dance when I’m standing in line at the grocery store and shake the bed as I’m trying to fall asleep. I can’t help it and often don’t realize that I’m doing it.

1. I have absolutely no control over my brain. It does what it wants. We used to be enemies but now I just kind of accept that it does its own thing.

I left cancer off the list because, “duh”, of course I hate cancer. I don’t need to talk about cancer in every post.

So, there you have it. If you have a pet peeve to report that is not on my list then too bad. If it’s not registered here then it technically cannot bother you (I guess I need to reread the definition of pet peeve, eh?) I am interested in hearing what your pet peeves are as long as it’s not about me.

Not a fan of Urgent Care

This cancer baloney stinks. Yesterday was Ben’s first day of his fourth cycle of this crazy antibody therapy and it was TERRIBLE. Let me start at the beginning.

I received a call from Ben’s treatment team asking if I would mind if Ben was assigned to “2nd bed” for the upcoming cycle of 3F8. Second bed means that we would have to wait until the first phase of kids went through their 3F8 and were discharged before we could start our session. I stalled for a bit in answering because my initial reaction was to say “no”. My reason for declining would be that Ben wouldn’t get started until much later in the day. That leaves mucho time for anxiety to grow (for both of us) AND the fact that Ben takes a long time to sleep off his pain medication. I figured that we wouldn’t be getting out of the hospital until very late at night. Evidently, the scheduler could sense my hesitation so she threw in a mini-guilt trip: there were so many new patients starting therapy this week and given the fact that there’s no way to calculate how these new kiddos will react to the painful poison they’re infusing into them, they should really start earlier in the day. I couldn’t truly argue with that but I did say that I would prefer to go first since Ben really struggled with recovery. I did not win my case.

So, we came in yesterday morning at 10:30 am instead of 8 am. Mondays are crazy with all the blood work, getting his port accessed, being seen by the treatment team, recording vital signs, etc. We heard all the kids screaming from their 3F8 process but we had to wait until one of them recovered and moved out of their bed. It flooded me with anxiety. Isn’t it ridiculous that there even has to be a second shift? I hate cancer.

So, yesterday, Dr. Kushner asks for a CT scan of Ben’s mandible because there was a small “marble-like” knot on Ben’s jaw. It was painful to the touch and, of course, I freaked out. I broke out in a cold sweat thinking that cancer was wreaking havoc in my son again. Dr. Kushner tried to reassure me that he didn’t think it was cancer but wanted that CT right away just to make sure. Radiology asked for Ben to come down at 2 PM, which gave us an hour to grab lunch. I made sure that Ben didn’t have to fast before this particular scan since he was starving. His nurse practitioner said that was fine so off we went.

When we arrived in radiology, they first said his appointment was at 3 pm. I told them that I had been in the room with the NP when she made the appointment for 2 PM. I was sitting right there! I heard the conversation! They said “nuh-uh”. Then they saw Ben’s drink from lunch and asked “Did he just eat?” I said that his NP said it was okay and they said “nuh-uh”. So, we rescheduled for 8 am the following morning and went back to the pediatric floor to get hooked up. There still wasn’t a bed available so we sat in the lobby and waited some more.

I cried intermittently all morning. I was on overload from hearing other kids screaming and new parents calling loved ones to let them know that 3F8 is “worse than they could have ever imagined”. Then the stress of thinking Ben’s cancer is back and we have to wait until tomorrow for a CT. Add to that  the anxiety of having to wait until late in the afternoon to start the process I just knew was going to be horrific. AAAAARRRRRGGGHHHHH! I fully believed that my head would have exploded if I didn’t let some of the pressure out from time to time. Crying was the best outlet.

He was finally hooked up around 4 PM with the 3F8 being infused shortly thereafter. His pain was immense. He screamed. He cried. He pleaded for God to help him. I tried to focus on getting him through it and rubbing wherever he asked me to. As I was furiously trying to soothe him, I became engrossed in watching a tear slide down his sweet, freckled cheek. It traveled slowly, almost like it wanted me to watch its journey. As it neared the point where it should have dropped off, it stuck. The setting sun of NYC was shining just right through Ben’s window. The light made that little tear glimmer like a diamond. It hung there for a long time until I finally wiped it away. I understood what the tear was trying to tell me: Just keep hanging on. When you think that you’re getting ready to drop off the face of whatever you’re clinging to, just keep hanging on.

Yes, inanimate objects talk to me. Don’t worry. I am being helped by a professional.

We left the hospital around 7 PM and went back to the Ronald. After about two hours, Ben started complaining of pain in his abdomen. I realized that I hadn’t seen him pee all day. Sure enough, that’s what the problem was. All the pain meds had affected him, making it impossible to relieve his bladder. His pain was awful. He cried and wanted to know why he had this life. He hated it. He didn’t want it. He wants normal.

Hang on, kiddo. Hang on. I feel like I can’t do it, you feel like you can’t do it, but we both have to keep hanging on.

So, I called the doctor on call. She had to be about 12 years old. She kept saying “like” and stalling when answering my questions. I was looking for her advice and eventually just said “eff-it” and took him to Urgent Care. Well, remember, we’re in NYC. We’re only about five blocks from Sloan Kettering but five blocks when you’re carrying your nine-year-old child is tedious. Add in the fact that it was pouring rain! Good times. Luckily, a cab was available and able to drive us the five blocks to the hospital.

When we finally arrived at Urgent Care, there were what appeared to be millions of people waiting to see a doctor. I was very discouraged. I sat down with Ben and settled in for what I thought was going to be an all-nighter. Ben would wake up intermittently and cry that he was hurting. I tried not to stare at the other patients who had everything from missing limbs to tumors the size of a baseball covering their eye. Urgent care is a terrible place to begin with, but when it’s a cancer facility I think the “ick-factor” is ratcheted up a notch.

Our 12-year-old doc came over and told us that Ben was on the priority list, right under anyone having chest pains. I almost shouted out that I, myself, was having chest pains so we could get seen earlier. We ended up going back soon thereafter so we could wait for an hour in a different location. At least we had a TV.

Two nurses worked on shoving a catheter into – you know – to try to relieve his bladder. Well, the first catheter was too big. Many screams ensued and nothing was relieved. Not Ben, and, unfortunately, not his bladder. They tried a smaller catheter, which went in quite easily since they had stretched “it” all out. Still nothing. I started to get worried. The doctor was asking me for advice. Finally, a nurse came in with a giant syringe and suctioned out all the pee she could get. It wasn’t copious amounts, but Ben did feel monumentally better. So did I. I nearly broke down for the 70th time that day.

We got back to the Ronald just before midnight. It had been a long flipping day.

We had to be up early to make it to that 8 am CT scan. I was worried about it, but understood that there was absolutely nothing I could do. If it was cancer, we would deal with it. If it was nothing, then yay-hooray! We waited for about an hour before getting called back. While we were in the second waiting area I nearly got sat on by an older lady (I guessed her at about 70). She was dressed in black leather gauchos, a bright red sweater, and had a full face of makeup. Her face had been pulled tighter than a Kindergartener’s shoelaces. In other words, she’d had a lot of work done.

As I said earlier, she nearly sat on my lap. I cleared my throat hoping that she’d figure it out before plopping down on me with her black leather gauchos. I kinda did want to feel them to determine if they were really leather or if they were “pleather”. And while her sitting on my lap would have offered the perfect scenario for figuring that out, my disdain overcame my curiosity, which came out as a very loud throat-clearing. She stopped mid-squat and moved over to the other chair. Then she got up again and headed over to the bathroom. I watched her with great interest. As she was waiting for the occupant to vacate the restroom she started to lose her balance. I saw her sway and then quickly regain her composure. I thought all was well and then “THUD” she hit the floor. I couldn’t get to her in time before she hit her head once on the wall and then again when it bounced off the floor. I felt terrible that I couldn’t get to her (I did call for help though) and then I stopped myself from going over and feeling her gauchos while she was passed out on the floor. Come to find out, she wasn’t even a patient. She was waiting for someone who was having a CT as she was their designated driver.

I wonder if she had pleather driving gloves to match her gauchos?

I do sincerely hope she’s okay. I did inquire about her on our way out of Ben’s scan. They said she was alert and awaiting her own scan. What a day.

So, Ben and I headed back to the hospital around noon today for his cycle of 3F8. We learned that the CT scan was just an errant saliva gland (YAY-HOORAY!) and today’s session of 3F8 was painful, but not anything like it was yesterday. Thank you, Lord.

As for me, I’m crazy. But like Ben’s tear, I’m just going to keep hanging on. At least until someone wipes me away.

It’s Columbus Day

Columbus, Columbus, we’re making it great.
Columbus, Columbus, the star of the state.
Co-luuummmmbus! Co-luuummmmbus!
Everyone’s proud, gonna shout it out loud for Columbus!
We’re making it great!
In the early 80’s, this was the civic slogan for Columbus, Ohio, the closest major city to where I grew up. This particular ad campaign has stuck with me for many years. I would say that the marketing folks hit the nail on the head when they came up with this little ditty. The tune was so infectious that I’ll NEVER be able to get it out of my head. At least until I get Alzheimer’s. In the meantime (until I’m afflicted with Alzheimer’s, that is) I’ll be happy to sing you this tune, but only if you buy me a beer.
So. It’s Columbus Day. Christopher Columbus “discovered” the New World in 1492. He originally set sail on August 3, 1492, but had trouble with the ships and stopped at the Canary Islands for a month. He traveled with three ships: The Nina, the Pinta and the Santa Maria. An exact replica of the Santa Maria hangs out on the Scioto River in Downtown Columbus.
Can you believe that Europeans thought the world was flat? And that it ended somewhere in the Atlantic? I wonder where they thought the world began? I mean, if it has an ending point it must have a beginning point, right? And did Columbus himself also believe that the world was flat? Was he on a quest to prove them wrong or was it a suicide mission? A plan to take many other sailors and the King of Spain’s money with him over the edge of the world? Columbus was Italian but had to borrow money from Spain because the Italians said “no” (I was pretty disappointed to learn that the Italian word for “no” is “no”. I was really hoping for something more exotic. Never mind.)
So, yay, Columbus! You “discovered” America! It wasn’t the Native Americans. No. And it wasn’t the Nordic people who came years before you. It was you. You da man (don’t mind my sarcasm). However, you DO deserve all the credit for proving to the Europeans that the world is not flat. I can totally see Columbus and his crew hitting that island in the Carribean, jumping off their ships and singing that 1980’s civic jingle I posted above, complete with “jazz-hands” and a bit of tap dancing. In the sand. On the beach.
Myself, I don’t want to explore new worlds. I don’t want to go where no other person has gone before. I’d like to be contained in a safe little world where happy music plays and kids are healthy all the time. An era where kids don’t want to be “Mr. Bungle”.
Sorry, had to share. But when I think of an idyllic world, this is the era that my mind turns to. An era where I would wear a dress fluffed with tulle under the apron I wore to make meat and potatoes for dinner. Where I’d wear my strand of pearls to scrub the toilets. Where I’d have a martini waiting for my man when he walked through the door at the end of his long day. The kids would be perfectly behaved. My hair would be perfectly coiffed. My house would be perfectly clean. And, thanks to the black and white aspect of my perfect world, nobody could tell that my hair was really red and that I was covered in freckles. And no one would see how pale my sick son truly is.
No, cancer has no place in my perfect world. Especially cancer striking children. That doesn’t happen, does it? Cancer only affects the elderly. In fact, my Aunt Jean’s best friend’s brother knew someone in their neighborhood who had a cousin (twice removed) who had cancer. But you can’t talk about it. You can only whisper the word *cancer*. If you say it out loud, you might contract it. And then you, too, will be terribly pale.
I don’t want to hear from you if you are going to criticize me for choosing the 1950’s for my idyllic world. I just want normal. I just want my son to be well and both of my children to be confident in who they are. I want them to feel that I value them. Treasure them. Adore them. Are proud of them. Love them. No matter what.
And, of course, to not be anything like Mr. Bungle.

It’s “World Smile Day”

Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
You’ll get by…

If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You’ll find that life is still worthwhile
If you just…

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying
You’ll find that life is still worthwhile
If you just…

Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
You’ll get by…

If you just smile.