Monday, December 5, 2011

Deciphering the hieroglyphics

I was in California not just to Occupy Los Angeles (or secretly camp out for an end-all, be-all sexed-up high school vampire flick), but to attend Pablove's second childhood cancer symposium. This year's theme was survivorship. I liked being able to go because it meant my kid was a survivor.

The people behind Pablove, Jo Ann and Jeff, lost their son to bilateral anaplastic Wilms tumor. It shows you what kind of people they are to host a symposium on survivorship. Very selfless indeed.

I've only just now looked through the notes I took, because it was quite overwhelming to hear what may or may be coming in the future. Apparently, nothing I scribbled may not be coming if I'm to read into all these sound bites I wrote down UNDERLINED AND CAPITALIZED WITH LOTS OF EXCLAMATION POINTS!!!

But seriously, this is like decoding hieroglyphic chicken scratch. Like, a right-handed Egyptian was dared to write an essay with his left-hand after drinking too much beer. But here are the highlights (lowlights?) to satisfy the Debbie Downer in all of us...

1 in 315 kids will have cancer before the age of 20. It is the leading cause of death by disease in children. There are 350-400,000 childhood cancer survivors in the United States.

It would appear that survivors may expect a 10.4 year loss in life expectancy.

73% of survivors will have a chronic health condition; 42% of those will be very serious. Survivors are 8 times more likely than their siblings to have a serious chronic illness.

The earliest late effects are second neoplasms.

Causes of death among 5-year survivors include new cancers (15.2%), cardiac issues (7%), and pulmonary issues (8.8%).

Radiation drives risk. Risk of what? I'm not sure. Maybe all of the above. I have never been a good note-taker. But whatever the risk is, it doesn't fall, even twenty years out.

Survivors are four times as likely to develop a carcinoma which comes even earlier than expected in the rest of us. This may happen around 15 years post-treatment.

Might be a good idea to start getting colonoscopies a little early because of the risk of abdominal radiation. Hey Blogger, might be a good idea to add "colonoscopies" to your dictionary! I'm sick of your squiggly red line here in the text editor. I swear I'm not making words up this post.

Cardiovascular disease is the leading cause of death in childhood cancer survivors, particularly those who received anthracyclines (like doxorubicin in Eve's case). These include cardiomyopathy, coronary artery disease, vascular insufficiency, and conduction abnormalities. Compared to their siblings, these kids are 9.3 times more likely to suffer from stroke, 10.4 times more likely to develop coronary artery disease, and 15.1 times as likely to have congestive heart failure. Less than 50% survive CHF.

Late effects continue to climb and not plateau after treatment.

Like I said, I was happy to attend because my child is a survivor. I left the day feeling like, oh my goodness, everything I had to sign on those treatment consent forms is going to happen to my kid!

But maybe they won't. But maybe they might. But we don't know, really. It's not like we had choices on the treatment. Either you treat and try to save your kid, or you don't. It's not a choice at all.

But damn! I feel sorry for Eve when it's her turn to start filling out her medical history.

The flight back home was uneventful except for the events. The plane was overbooked and there was a waiting list to get on the flight. Obviously, this would be a good time to raise my hand when they start asking for volunteers to check their carry-on bags. My "carry-on" bag had swollen to twice it's weight over the weekend and it needed to be checked immediately because I was losing feeling in my arm. However, no one was asking for volunteers.

I hobbled up to the desk with my bag that may have had a slightly smaller person inside and asked if they were going to call for volunteers to check bags for free. That's so sweet of you! That would be great! My bag was taken, but no call was made for anyone else to volunteer. And maybe because I offered, or maybe because they were in a good mood, I got two drink vouchers. I mean, I could also use them for headphones, but come on.

I tried my best to be the last person on the plane but other people did the "No, you first, I insist!" bee-ess, and I was forced to board. Upon asking the flight attendant where I should leave my checked bag: You don't need to check your bag. Just put it under your seat or in the overhead compartment. No, I really want to check my bag. But you don't need to check your bag, ma'am. There is plenty of room for it. I want to check my bag! Where do I leave it?? Ok, but you really don't need to check it.

But seriously, lady. I want to check this bag. It is obviously far too big to fit under the seat and there's no way I can lift it over my head. If Mr. T is on board and he can get my bag into a bin, and then the compartment comes open during some turbulence and my bag falls out, it will give someone a brain injury. I'm leaving this bag here, in front of you. I am not allowed to do this in the terminal because someone will call security on me, but I trust that you will find a way to get this bag into the belly of this plane, no matter how crazy you think I am that I am taking the chance to be separated from my clean underwear and socks.

The bag got checked, albeit with flight attendant eyeballs firmly lodged into the northern-most position. Roll your eyes if I try to sneak into first class, roll your eyes if I ask for another eleven peanuts, but please don't roll your eyes when I ask you to rid me of my carry-on bag.

I was almost to my seat when I heard the announcement. We're sorry to the people who boarded in Zone 4, but this plane is completely full and all our overhead compartments are full. We are going to have to check your carry-on bags.

But those people don't get the free drink coupons. And all but one really looked like they didn't want to part with their bags. Probably the people who didn't think to pack clean underwear and socks in their purses or European carry-alls.

Once I got to my seat, I swear the man next to me watched me buckle and put away my purse and get as comfy as could be gotten in coach on a cross-country flight before he asked if I would stand up so he could try and switch seats. Because he saw an empty seat. Because he must have boarded this aircraft from a different gate that did not have three television monitors dedicated to the wait list for this flight or two very annoyed flight attendants who were offering flight vouchers to those who volunteered to get bumped. I want to be where he was, whether it was two gates down or just on that lonely island in his head.

I obviously took too long to consider his request and stand up because after he got past me, it wasn't until I buckling myself up again that he huffed back, upset that he missed the open seat. Someone else took it. Or someone else, I dunno, was busy checking their bag because the plane was full and there was no room for carry-ons. Either way. I'm sorry you can't sit next to your girlfriend, but I'm not giving up my aisle seat. Maybe if she had chosen not to sit between two people who had obviously either run a marathon just seconds before jumping into the fried chicken at Golden Corral or skipped the marathon and jumped into the chicken at Golden Corral. Umm, because my kid had cancer. And if I use these drink vouchers, I want to be close to the bathroom. I've got lots of reasons. But she can switch seats with you if you are that concerned and she will probably love you for it. Because me and this other dude you are sitting between aren't sweating profusely nor do we smell profusely of fried chicken.

He didn't move. I don't think that couple is going to last very long.

The flight was very bumpy. I would have welcomed some Dramamine but went to work with the drink vouchers instead. Six of one, three-quarters of a dozen of the other.

I was hungry. Well, not so much hungry, but maybe more queasy from the turbulence. I felt like I was on a plane that was being filmed by National Geographic because it snuck up on another plane and tried to make baby planes. When the flight attendants were finally allowed to walk around with the food and beverage cart, I tried to order a sandwich but was told he was only taking drink orders first. So I ordered my drink, then looked at the menu again and decided I would definitely be ordering the turkey and chicken Cuban sandwich. And if you don't know why that is funny, you should go down to Florida and try to order a turkey and chicken Cuban.

I was eyeing said sandwich when another flight attendant came over and asked my dude if he had any sandwiches left. He had two and handed them over, and my belly got real sad. I said, "Was that the last sandwich?" as the turkey and chicken Cuban made it's way up to the front of the plane. I didn't really want the other food I could purchase, because it was three pieces of cheese with four grapes and a cracker. I wanted the turkey and chicken Cuban.

I didn't expect my flight attendant to call for the sandwich back as it was being handed over to the passenger in the front. I certainly didn't expect the other flight attendant to literally take it out of the woman's hands and walk it back to my flight attendant. "Sorry," he told her, "she was going to order this but I was only taking drink orders. We still have fruit and cheese plates left."

And as my sandwich got passed from person to person back to my seat, being manhandled like a football at a tailgate, each person on the plane was required to say, "She got the last sandwich." According to my calculations, 48% of people awake on the plane said, "She got the last sandwich." I was too hungry to be embarrassed. I knew they were just jealous. Give me my sandwich.

Then the guy sitting next to me, the one who wants me to move so he can get to the empty seat, says to the flight attendant, "I'll have the turkey and chicken Cuban."

"She," the flight attendant says, emphatically pointing at me, "got the last sandwich!"

But at this point, I was the crazy lady on the plane LOL'ing all over myself because I had a turkey and chicken Cuban, a copy of Bossypants, and two Miller Lites. Life is good! Except if you were treated with anthracyclines as a child.


  1. Christy you should write a book. You are so funny!! Sounds like our flight back home was much better than yours:)

    Tina and Aurora

  2. Hello. My name is Katie Martin. My little girl, Madeleine, has bilateral Wilm's tumor. If you go to the website:, you will find out more intricate details...I will just tell you I read through your entire blog before embarking on this full journey two months ago.

    If you are interested...I had unilateral Wilm's at 18 months of age followed by 6 months of chemo. I was always worried about passing it down to offspring, but was told it was extremely unlikely. I basically decided on getting an ultrasound done for my daughter Madeleine at 2 years of age b/c I am neurotic, and it confirmed my worst fears. Madeleine was diagnosed at the time with wilm's on her left with multiple nephrogenic rests on both of her kidneys. We went to St. Jude where they started vincristine and dactinomycin, followed by surgery on 12/8. They were able to get all 9 lesions! We just got the pathology back this week, and it showed that she has Wilm's on ALL NINE LESIONS. The pathology also showed cancer cells on a lot of the margins that they obtained. In a cellular aspect, they looked like blastocytes...which are not expected after 4-6 weeks of treatment. They said they neither look favorable or anaplastic....sorta of a gray in between cellular level. We are scared...but remain optimistic. They are now changing her to four chemo drugs, with the addition of 6-7 days of radiation.

    What are your thoughts/ideas?

    You don't have to respond....but if you wish, my email is you could also comment on Madeleine's website if you wish.

    Take care, and God bless your daughter Eve.

    Katie Martin

  3. This is Madeleine's Dad and Katie's Hubby.

    This is probably more than you signed up for when you initiated your blog, but that is my wife and she's going to fight for her/our baby. For that matter, Madeleine is a fighter also.

    We pray we have the strength we all need to make it to other side, and by that, I mean the cure of cancer. Needless to say, it sucks. However, we have gained some measure of strength from your blog as well as your daughter, who also seems to be made of the same fiber as Madeleine.

    I hope that we have two tough girls of similar age in 20 years who can have a picture made together and a lifetime of stories to share. God be with them that they may outlast us all.

    Thanks for considering us and our situation. It is really not your problem, but we would appreciate the opportunity to converse with you both as parents and incidental caregivers.....the road is neither easy nor impossible.....and friends made along the way make for a lighter burden.

    Merry Christmas, Season's Greetings and Our Best,
    Justin (and Katie and Madeleine of course)