The Heartburn, Pt. 2

I think I know what my problem is.

I do fine with CT scans; it's the ultrasounds that put me in a rocking chair staring blankly ahead.

The Heartburn

Lately, lots of things have been giving me heartburn.

(I will not change my eating habits, no siree. I will eat generic Tums all the live long day.)

Scanxiety.

Where to begin since we last talked? Ok, I guess this time I'll go in chronological order.

Wednesday was Natalie and Daniel's last day of preschool. I brought cupcakes in for Daniel's birthday, so I couldn't get away with not bringing them into Nat's class, even though her birthday isn't until Memorial Day. She's great at the emotional-blackmailing.

The Wise One Returns

So, I have this friend whose daughter has beaten the beast twice. She's pretty much the Dumbledore of all things Wilms, and so aptly sums up anything I could try to write, but in a much more articulate way.

It takes a village.

The first rule about Cancer Club is, you do not talk about Cancer Club. The second rule of Cancer Club is, you DO NOT talk about Cancer Club!



Cancer is annoying and obnoxious. Cancer is depressing and more depressing. Cancer takes a bite out of your social life and a bigger bite out of your wallet. I am Jack's raging bile duct. It is important for me to just face those facts every once in a while and then get on with life. (Well, my new life.) I hear a lot of, "I don't know what I would do if I were in your shoes!" But honestly, what else COULD you do? If there was another choice, no one clued me in on it.

I'm gonna go completely cliche' on you, so advanced apologies. If you let cancer suck you in and you don't take the time to flip it the bird, it might as well win. It feels good to give Eve that chemo cocktail, like shouting "Eff ewe!" to any shady cells that dare look in her direction. I am Jack's smirking revenge. You have to find some kind of warped pleasure in it all or else you'll A) have mascara running down your face or B) be committed.

If this is your first time at Cancer Club, you have to fight.

And I'm not under any delusions that Eve is the only person affected by Wilms; Natalie and Daniel suffer, too. They haven't had any friends over since October. They sense our suspicions that they are hosting some horrible contagious disease each time they come through the door as they are hosed down with sanitizer. They beg for me to hold them as much as I hold the little bald one. They deserve a break from this madness as much as Eve.

Luckily, we have a great network of friends who are supporting our family during this bad dream. We are in debt to the people who take Natalie and Daniel into their homes and show them the affection that they aren't sensing from us at times. Not that it's not there, but at the end of the day, when you put in twelve hours at Cancer Club, it might not be as obvious to a three- and four-year-old just how much you love them.

If you were to ask the worst thing about Eve being sick to Daniel, he would probably tell you it's the constant handwashing that is the kicker. If you were to ask him what the best part is, it would be the Grandmas.

We have been more than lucky to have our moms spend the majority of their free time here. Nat and Dan have come to expect that Mimaw will bring gummy snacks and do crafts with them, and Nana will bring toys and take them to the movie store. Matt and I have even snuck out a few times at night when a Grandma is in town and slept in the next morning. To them, we are eternally grateful.

(And to my dad, thanks for not having any abandonment issues. Mom will be home soon!)

Our friends, neighbors, and people we don't even know have stocked our freezer full of food. I can count the number of times I've had to cook in the past month on one hand. We had fourteen containers of baked ziti at last count. That's a lot of cheesy love right there.

We have secret angels who leave gifts on our doorstep. Some little, some big, but all restore your faith in humanity. It's amazing how generous people can be when the crap hits the fan.

Some bring by money for hospital parking. Some bring by gifts for Nat and Dan. Some leave a bottle of wine at your door and give you permission to hang up the white coat and relax a little bit.

I say all this to let you know that while Cancer Club loses major points for the suckage factor, it also opens your eyes to the goodness in others. It truly feels like we're all in this together, except we are the ones with the hair in our food.

Thank you for all the good vibes that you continue to send our way. I don't get a chance to respond to messages in a timely manner, if I even get a chance to respond at all, but I do read all the emails, comments, cards, and letters, and go to bed happy. All is well in the universe sometimes, even when it's clearly not.


If you are on Facebook (and if you're NOT, come on! It's 2010!), you can join Team Eve. It was started by two close friends of ours who have a BBQ fundraiser in the works for us in May. http//www.facebook.com/pages/Team-Eve/308434913681?v=wall#!/pages/Team-Eve/308434913681?ref=ts

And the coolest part? There are shirts being printed! A friend of ours designed a cool "Team Eve" logo that will be on them, perhaps to the disappointment of some of you who were hoping for a "Cuck Fancer" design. (But I did get a Cuck Fancer shirt from Gwyn's momma last weekend, and it is teh awesome.) If you want to order one or find out more about the fundraiser, you can send an email to teameve@rocketmail.com.



It's late and I have Cancer in the morning.
"You met me at a very strange time in my life."

It's just me and this computer, in the dark.

I have been amazed by how little sleep Eve has been functioning on the past few days, but I suppose she's not spending a ton of energy just lying there watching Dungle Book. She finally let me put pajamas on her last night. (Until that point, she was hanging Mowgli-style.)

The last IV came out today; this will make thumb sucking much easier. [Note to self: invent protein-rich thumb-flavored Dum Dums.] We also were able to disconnect the fluids so Eve and I could go on a walk around the floor. She did great- no signs of forgetting how to use her legs. It was the first time she's been out of her bed since we've been here.

Eve found a red wagon she wanted to ride in, so I must have burned like 18 calories pulling her around in that. I might go search for some chocolate now that I've gotten my exercise in.

The pain is getting a lot better, and it's okay if we don't give her pain meds every four hours on the dot. It's quite amazing how quickly kids recover. If I were her, I'd totally be milking it. I can't keep anything down but Taco Bell. I need some sleep- everyone leave the room and turn off the lights, because I'm not getting off this couch. And don't forget to give me the remote before you go.

Natalie and Daniel came to visit today with my parents. They brought cookies and cards and were just pretty darn adorable. I was happy to see Dan give Eve a hug and a kiss. He normally runs away and hides when she tries to get some love, like Swamp Thing is coming after him or something. He did ask if Eve has cancer, and when I said yes, he told me he wanted cancer, too. [Note to self: forget about Dum Dums and pay more attention to Daniel.]

So Eve fell asleep this evening around 7:20. It is the earliest she has been to bed yet. I am pleased, yet a little lonely. It's just me and this computer, in the dark.

I am happy to see one of my favorite nurses is back for tonight's shift. He understands what Eve is going through, being a cancer survivor himself. He also had abdominal surgery, so when I was demanding more drugs for Eve, he was definitely on our side, even when the surgical team just wanted to keep shoving Tylenol up Eve's butt. Seriously, I take a Tylenol when I have a mild headache; break out the good stuff for my daughter when she comes out of the operating room after having a major organ removed.

We will most likely be breaking out of here tomorrow. I am beyond excited, despite the lack of exclamation points in this post. The first thing I am going to do is search for some snow that isn't yellow and take a big bite.

Why, Santy Claus, Why?

Why are you taking our Christmas tree, why? Oh, Cindy Lou Who, it's because I'm done with Christmas. It's because I love reclaiming my house from that very cluttery holiday. My qi was having a hard time moving around the place with so many pre-lit decorations jutting out from every corner. (And yes, it's also because I'm still a tiny bit bitter about those lights.)

It's a brand-new year; it's a brand-new Christy. Waking up a bit later than usual on New Year's Day (like, three hours later) with just as much fog in my head as there was in the air, I resolved to go green in 2010. So I skipped the shower and headed for the Motrin.

The only resolution I've ever kept in the past has been to make our bed every day. Our room could resemble the aftermath of a nuclear explosion, but as long as the bed is made, there is some order left in the universe. I can, at least, have some control over something. And here I am making you believe that I have done this everyday in recent memory, when in fact this morning I was more preoccupied with getting ready for clinic than doing the one-armed bed making dance. (Go ahead, try hospital corners with a small child on your hip!)

Today I just KNEW that Eve's ANC would be too low to get chemo. I mean, I had this feeling in my gut we'd have to spend another two hours in there waiting for someone to come back and tell us she didn't make counts.

We've talked about my instincts before, no?

Her ANC was 1218. All systems go. Doxorubicin, Dactinomycin, Vincristine...bring it!

10 down, 2 to go.

We're so close, I can almost taste it. But of course, you have to wear gloves and a mask and you're really not supposed to taste that stuff. It's poison, after all.

Back to clinic on Friday for more Vincristine, provided Eve doesn't show any more toxicity from the dose she just had today. I did have an appointment with my endocrinologist this Friday, but that can be rescheduled. Wilms trumps diabetes this week.

Me: Hi, I have an appointment for Friday that I need to reschedule.
Them: Sure. The next available appointment I have is for next Friday.
Me: Hmm...that's not going to work. [Chemo day]
Them: The next available appointment after that is Wednesday the 20th.
Me: I can't make that date, either. [MRI and CT scans]
Them: I can fit you in on Monday the 25th.
Me: I think I might have something else going on. [Nephrectomy, anyone?]

I guess I'll call back next month and try again. My phone only holds a charge for so long, you know.

And while needing to reschedule my appointment was good news, because it means that we are tentatively back on schedule with chemo, I still had a pressing matter on my mind- Natalie.

She thinks she gave Eve cancer.

No, sweet girl, you cannot give someone tumors. Why do you think that?
Well, I threw up one night a long time ago and then I gave Eve a kiss.
No, baby. That did not give Eve tumors.
Then who did she get them from?

Oh, boy. I don't even know where to start. How do I explain that cold and flu-sick is different than cancer-sick? Is sick even the right word?

Natalie has caught onto things very quickly. "Eve's medicines that she takes can make her food taste funny to her sometimes, Mommy. That's why she doesn't want to eat that right now. I can eat it, though!" Or, "Eve has a port where she gets chemotherapy to shrink the tumors in her belly." And, "When Eve's numbers get back up to a thousand, she can sleep in my room again!"

Now, how to make her understand you can't catch cancer?

Overwilmed.

I'm convinced that Dan is overwilmed (get it?) with how our lives are right now. I let him watch TV in our room while I got a shower. Before I left him, I turned it on Sesame Street. Sitting Indian style, he appeared interested in the programming. When I checked on him after my shower, he was watching static. Sitting Indian style, he appeared interested in the programming. Either he was trying to convince Carol Anne not to go into the light, or he wasn't lying when he told me he didn't feel anything.

Natalie was sad I couldn't take her to ballet today. I told her I would go with her next week. My friend has been taking her every week and I am so grateful for that...we really want to keep the kids on their normal schedule. I would have liked to have gone and see her dance, but I had to get Dan ready for soccer while Matt took Eve to get some blood work at the pediatrician's office. No matter how hard I try, I cannot be in multiple places at once. I am not Santa Claus.

Matt got home with Eve in time for me to find out that Eve's ANC (Absolute Neutrophil Count) was 602- under 500 and you are considered neutropenic, meaning you are at a very high risk of getting an infection. Dan and I rushed out the door to head out to soccer. I did my best to get him pumped up. We talked about soccer the whole ride out there.

As soon as we got there, he decided he needed to use the restroom. When we were done washing hands, he asked, "Where is the hand sanitizer?" Good to know something is rubbing off! Any of you who know me personally know that I am not a germophobe. This is the girl who once watched 2-year-old Natalie bury a cracker in the mulch at the playground and the next day watched her dig it back up and eat it. Did I freak out? No. Do I freak out when someone breathes in Eve's direction nowadays? Absolutely.

Dan's soccer class is 50 minutes. 20 minutes into it, he just walks out and heads toward the exit. No tears, no anger, just says he wants to go home. I bribed him to stay with ice cream. He thought about it and decided he did not want any. I told him he was free to go, but he had to go tell his coach he was leaving so the coach wouldn't worry about him. Dan gave a half-hearted goodbye, and we were on our way back to the van. I explained to him that this meant no ice cream- he responded that he didn't want any ice cream. He told me three times on the way home that he wanted no ice cream. Until we pulled into our driveway. Where is my ice cream?!? I want my ice cream!!!

After chasing him outside around our house, then around our neighbors' house, then around our house again, I finally caught the screaming child and wrestled him inside. Had I wanted exercise, I would have signed up for the Mommy and Me version of the soccer class.

Coming back into the house, you will usually see a stack of of mail, and on top there is bound to be a thick envelope from Duke University Health System (or DUHS, as is written all over the hospital...I'm convinced they spray painted that on the back of the wheelchairs for my amusement). When this whole cancer thing started out, the last thing on my mind was money. You just want your child better. That's it. But then people started giving us money here and there. Some of whom don't know me from an alley cat. (How amazing are these people?!) Which made me think for the first time, Oh crap! We actually have to pay for this stuff!!! After seeing some of the bills in which there are multiple radiology charges, Matt and I have a vision in our heads of radiologists sitting around a big table, passing Eve's scans back and forth. Each time it comes into their hands, a tick mark is added to the bill. "Pass that scan back over here! I'm saving up for Cabo!"

It's comforting to know that we are not the only ones going through this, though. And then I feel like a bad person for finding comfort in the fact that there are other people going through this.

And cliché as it may sound, it really is a small world. When I first began my email campaign to your inboxes, I got so many responses from people who had friends or family that had been through Wilms. One good friend from home sent my emails to her aunt, who is friends with the mother of one of the 14 kids in the original bilateral trial (See: Monday, October 26, 2009, part 2). I found out over the weekend that an old coworker's one-year-old daughter was diagnosed with Wilms back in June and has now finished up chemo. What are the odds?

I do feel as though I am in a position to comfort my friends. If they are anything like me, I am sure they have pictured what it would be like to have their own child stricken with cancer, and the thought is pretty upsetting. But when it is your reality, you just have to do what you have to do. I don't really have a lot of time to be upset right now- Nat, Dan, and Eve won't allow it.

Maybe I just made some more time for myself, though--- I went out to get a major haircut. Like, enough hair on the floor to make it look as though Edward Scissorhands and Axl Rose really got into it. I wanted something that I could spend 60 seconds on, tops. More time for being with the kids. Those minutes really add up when you think about how fast they are growing.

(Although Dan might not be growing anymore on account of the Nasonex.)

Lawn chairs and hiney coughs.

Eve let us give her medicine not once, but twice in one day! We are beyond happy with this. It did make Natalie break down in tears, as Eve took her medicine so quickly that Nat missed the event when she and Daniel went to get their lawn chairs (See: Wow, I just started a blog).

Eve seemed a tad more tired, earlier than usual, so I put her down for an early nap. She slept several hours. She still appears to be in high spirits, though. There's just a lot of stuff going on in that little body of hers, and some rest is bound to do it good.

We kept Natalie home from school today because she had the tail end of a cold going on. Since she was upset that she couldn't go, Matt promised her I would let her play with scissors and glue (I guess this is what he pictures her doing at preschool). She made cards for everyone in her preschool class, and two of them were to boys with "I love you" and "XOXO" written on the inside. Do I sense a Dwight-Andy duel coming on?

I do think Nat is sad that Eve is not sleeping in her room right now. Eve is sleeping in our room while her counts are low, and especially now that Nat is getting over that cold. No one beyond Eve has been sleeping well. Last night I made the mistake of reading some CaringBridge pages and blogs of kids with cancer and I could not get to sleep for hours. I just laid in bed seeing those faces over and over again. Just when I did start to doze off, Nat starts screaming in her room. She had a bad dream that her preschool friends were kicking her. I laid next to her for a little while, but no way could I go to sleep in that bed- it's so uncomfortable for anyone over 60 pounds. I crept back into our room and fell asleep for about 2 hours only to wake up to Eve crying. Apparently Daniel had snuck into our room and turned on the lights and then left. I turned off the lights and got another 2 hours sleep.

Daniel used to be our best sleeper. He would go down for naps no problem and sleep for hours. Then he'd go to bed and sleep until Natalie burst into his room and woke him up. Ever since all this craziness started, he has been the one not sleeping. Naptimes are horrible. I tried to take a nap today on the couch, but he kept coming out of his room and and jumping on me. When I sent him back upstairs to his room, he'd let all the Irish people out of his closet and they did Riverdance above my head.

If Dan doesn't sleep well, no one has a great day. He gets all crazy like Kanye West having a temper tantrum. And we know when it's going to be one of those days when we are awakened at 4:30 a.m. by Plaza Sesamo, and it's Daniel holding the remote.

But one thing that Dan does well is claiming the toot that escapes the place we never mention at at the dinner table. He is a true boy in the fact that he not only tells you he did it, but he is damn proud of it. Natalie doesn't get embarrassed by this phenomenon when it happens to her, but she has found a loophole in the "excuse me" rule. You need to excuse yourself when you belch or pass gas. But, if your hiney is simply coughing, no need to be excused.

Who knew my world would shrink down to tallying poops and blogging about gas?