God is my personal cosmic vending machine

So I went into the clinic today for a pre-admit this morning, in the hopes of having a hospital admit tomorrow. Alas, it was not to be. My platelets hate me. Eighty-five thousand is not high enough for chemo. I can just imagine any remaining cancer cells being like, "Yay!" and jumping up and down. Maybe I should go get some weed-killer from the garage and rig up a chemotherapy pump with an old lawn mower, an empty milk jug, and some aquarium tubing. I would probably end up poisoning myself, which would sort of defeat the purpose of life-saving chemo. Ugh.

On a totally unrelated note, I feel like I have done a poor job of informing people about how "out of it" I get during chemotherapy. They will come in for a pleasant chat, and then are completely unprepared when I fall asleep mid-sentence or start talking to the wall. One actually did go like this (alas, I am NOT exaggerating for comic effect):

• Unsuspecting visitor: Hey Jen! How are you?
• Me: Sooooo gooood. How’re your-jeh?
• Unsuspecting visitor: Just fine. What are you doing there?
• Me: Ummm…er jeh…so how are things go?
• Unsusupecting visitor: Just great. Is that a coloring book with a fish that you are coloring…or…getting marker all over yourself with? Did you mean to draw on your face?
• Me: Imma…ber…How going are…thiiiings?
• Unsuspecting visitor: Not much has changed in the past 5 minutes; everything is still great.
• Me: Uh…so I’m sooo haaapyy that things are great with yourr liiiife…what…eh…how are you?
• Unsuspecting visitor: Um…I’m in a hospital.
• Me: Oh my gosh! Why?!!! (I wish that I were making this line up)
  

This was when I was on a pain pump Junish/Julyish, and this amusing conversation was later related back to me. I am no longer on a pain pump, so I am more alert. However, I still tend to repeat myself a lot, get confused, and sometimes just stop mid-sentence with no idea of what I was talking about. And I probably won’t remember very much, if anything, except that you showed up (maybe). Thankfully this is mostly temporary, and I regain lucidity about a week following chemo.

So this brings up lots of opportunities for you. If you hate your cousin because she gossiped about you and you found out about it, you can come in and tell me all about it. Then you can pretend that I am your cousin and tell her (me) a piece of your mind and scream at her (me) all that you want. I might fall asleep or be confused and look at you pitifully like “What did I do?!!! …pout, but I will forget all about it in a few minutes or so. Do you have a burning secret which you must tell somebody but that NOBODY can know? I am the perfect solution to that problem! Just pour your heart out to me and know that your secret is perfectly safe because I have forgotten it already. Do you like to boorishly lecture about some arcane subject that nobody wants to hear about? Just come on in and tell me! I will stare blankly at you and make disjointed statements that have nothing to do with anything. When you are expounding about, “And THAT is the crux to discerning the role of internally desiccated socially constructed paradigms in our cohort,” I will nod knowingly and say something intelligent like “strawberry ice cream is yummy but I threw it up all over myself earlier.”

Generally it is not too scary to talk to me and you are free to laugh at me if I say something stupid; I probably will. Several people have come up to me and have been like, “Oh man, I don’t know how to talk to you anymore. I don’t want to offend you.” Trust me, you will not offend me. I am not cancer. This is really cheesy, but true: “I have cancer but cancer doesn’t have me.” I have bouts of crushing existential sadness regarding the general human condition if I let myself listen to a The Cure album for too long, but I don’t really feel sorry for myself because I'm happy to be alive (if that makes sense). If people want to know how I’m feeling or doing that is totally cool. If you cry or whatever, I don’t mind. If you think that your bout with chicken pox was comparable to cancer and you know exactly how I feel, I certainly didn’t have your chicken pox - so for all I know it was as bad. If after a bad case of food poisoning, you wish to compare puke stories – sounds like fun!

Only one time do I remember someone actually making me MAD. This was off chemo, so maybe other people made me mad while I was on chemo and I forgot about it, but anyway... About the only place where I draw the line is if you are “convicted” that I did something to make God angry enough to give me cancer, and you want to “help me get right” with God so that he will give me back my health. I know that I go to Church because God is my personal cosmic vending machine who will give me everything that I want as long as I am a “good Christian” robot who is in the pew every Sunday and goes through all the right motions. Just forget all those things that Jesus (and pretty much any religion or metaphysical system) said about loving people . If I pray for a Cadillac and get it, then I am a good Christian. If my neighbor doesn't, he must have done something wrong. Oh wait, there are little children in the hospital cancer wards? What?! Oh something must be wrong with their spiritual lives! You know, they must have had a gambling problem or something (those elementary school poker tournaments must be stopped NOW).

But honestly, I am too nice to say this to anyone's face. Most likely I will respond by babbling about throwing up strawberry ice cream earlier. And you won’t know if it is because I am really confused or because I just want you to shut up for your own good so that you don’t mess things up with God too much.

The world's worst Christmas present

My mom knows that I love Bette Davis, and so we have been ordering every one of her movies off of net flicks. Today I was at first excited as the screen flashed up the ominous title "Dark Victory," and looked forward to 90 minutes of escapism. But alas, it was not to be. The quintessential Bette Davis character Judith, a feisty 23-year old, lives an exciting and privelaged life. But suddenly, she feels unwell. After a surgery, it is disclosed that she has cancer in her head and that she will suffer a fatal recurrence. She breaks up with the man that she is engaged to, because she does not want anyone to marry her out of pity. As a consolation, she decides to lose herself in the numbness of hedonism. After a confrontation with a friend, she realizes that she should get married because she wants to live out the last months of her life in dignity. At the end she collapses and the screen fades away. Credits roll.

Hey folks! You want to know what movie NOT to buy me for Christmas?! Unless you HATE ME. One guess...

The flying pink unicorn of cancer

Here is a picture of me in the hospital a couple of days ago – but I could just as easily have used a picture of anyone else with cancer, because we all look like funny little bald people.

Here is a picture of me just two days later. I have gotten good at the wig and makeup thing. To quote a favorite author of mine, Anne Barone: “Didn’t Voltaire say that illusion was the source of all happiness?!”

I am nearing the end of treatment (one to two months left), and have already ended my radiation days. I really don't have much nostalgia for them. One of the ongoing realities of having had cancer is the never-ending follow-ups that you have with various specialists. Today was radiation follow-up day.

My radiation-oncologist is an interesting fellow, who prefers to bike to work and lets pediatric cancer patients hit him with a pie at the conclusion of treatment (I was given the option because of the nature of my cancer and it was so tempting). I told him that I didn't hate him for subjecting me to two months of hell, and I actually like him because he did a great job and I'm not dead. He also took the trouble to read over the studies I had brought in which highlighted a particular concern that I had, even going to the point of finding another more comprehensive study to counteract the concerns of the prior studies.

He said thanks. Then he told the resident that I was an interesting case and he would not see another like it again. I proceeded to inform the resident that I was the flying pink unicorn of cancer, and rattled off all of the statistics verbatim (only 1 in 333,000 people get it, only 10% are above the age of 20, only 4% begin as extraosseous lesions, and only 2% begin in the skull). When I was leaving, the resident told me to, "Fly away pink unicorn, fly away!" This made me feel special. Then I got to stop and visit with a couple of my favorite nurses, which made me happy.

Seriously, I have the highest opinion of The James Graham Brown Cancer Center in Louisville and all of the phenomenal nurses and doctors who work there. I have thoroughly researched every treatment option for Ewing's sarcoma, and I am convinced that I could not have received better care at any other hospital than I have received at Kosair Children's Hospital and at The James Graham Brown Cancer Center.

Plus I got Pony balloons at Kosair. Aren't you jealous, people at adult hospitals?! You don't have balloon Tuesday! Ha! I think that I actually pointed this out in an earlier post, but I'm saying it again to rub it in your face.

Whatever en Français

So I really don't feel like writing about cancer today (even though this is my "cancer blog") because cancer is annoying. Before I became "cancer girl," wherein people would refer to me as "that girl with cancer," and not "that groovy chick," or "Jenn," or "hey you," I was often known as "Frenchie," because of my total love of French language and culture. I was supposed to spend the summer in Provence, but I got cancer instead. My body decided that it would much rather be hooked up to poisonous chemotherapy in a hospital bed than lounging on the beaches of the Riviera. But I digress. Anyway, I will be going on a linguistic detour and you are welcome to come along.

One of the many reasons that I love the French is because they have so many ways to say “Whatever.” They originated blasé, and gave the English language the word apathetic. One of the classic French stereotypes is the blasé French man or woman smoking their cigarette and drinking their glass of wine, and generally looking like "I don't care." Not that I’m advocating that anyone turn to booze or tobacco to deal with their problems, but that's the stereotype. And the French do drink more and also eat more saturated fat than we do – and they live longer! Zut alors! (aww shucks) There are many books about this phenomenon, called the French Paradox, but my favorite are the accessible chick-lit books by Anne Barone.

From my conversations with French people, I have observed that they don't seem to care so much about the everyday things (at least this is my impression). They prefer to talk about a new book or wine or something hyper-intellectual or existentially deep, and don't seem quite as prone to gossiping or dieting competition or other stupid things because I suspect that they just don't care. I have certainly noticed that they have more ways of saying, "I don't care," than we do in English.

Some of the many ways to quote Rhett Butler and say "Frankly, my dear, I don't give a damn," in French:

Que sera sera = What will be, will be

Tout m’est égal = It’s all the same to me

C’est la vie = That’s life.

Ça va = Life’s ok (lit. it goes)

Ça me fait rien = It’s nothing to me

N’importe quoi = Whatever

Ça plane pour moi = That’s how it’s going for me (I'm not sure, but I think this is dated slang; it means something like “great,” but in an ironic sense)

The classic Gallic shrug - that nonchalant way that French people shrug (about the weather, their boyfriend leaving them, an alien invasion, or anything really)

I couldn’t think of anything else, but I’m sure there are others. Oh well, tout m’est égal. On a sort of unrelated note, here is a completely demented video of the end of the world, with a stereotypical French response. (Warning: this contains every curse word imaginable, cartoon violence, offensive cultural stereotypes, and is not exactly terribly edifying - though its redeeming qualities include that it does contain a strong anti-violence message and is crazy funny):

The End of the World

Radiology 101

Here is an exact replication of a radiology textbook used in a local medical school for your entertainment and edification. Well – not really. But I am very suspicious that they use something like this. I have nothing against radiologists, except that they have a tendency to scare the bajeezus out of me, even when they're giving "good" news. Like, "congratulations, you don't have cancer in your jaw anymore, but there might be some cancer in your tibia; or there might not be; maybe it's just the way that you're lying on the table - I'm not really sure." I know it's not their fault, because they want you to be fully-informed. And if you have an ambiguous scan (I've had a couple), they should make sure you are aware. But gee, I just want them to tell me "Everything is A-OK!" (doesn't everybody?) Anyway, on with the blog entry.

Chapter One: What do radiologists do?

As a radiologist, your goal is to professionally play Where's Waldo? and find "spots of doom." Spots of doom = bad. No spots of doom = Good. So what does a spot of doom look like? Take a look at this technetium contrast bone scan:

Did you find the spot of doom in this scan? Good! Remember, spots of doom are bad.

What are some common causes of spots of doom? Let’s examine the above scan. Perhaps the patient was attacked by a rabid llama. Or perhabs a rabid moose. These are all good guesses. In this case, the patient had an exotic form of bone-cannibalizing cancer, which munched her right lower mandible.

In this scan, the spot of doom is gone and replaced by Michael Bolton. Can you find the Michael Bolton? Good!

Now that the cancer appears to be gone but mysteriously replaced by Michael Bolton, we must write the scan summary to explain this to the patient. “Increased uptake of prior scan is resolved,” is a very good start. This means that the spot of doom is gone. However, we cannot leave it at just this. It would defeat the radiologist’s goal of simultaneously informing and confusing the heck out of their patients. And thus, we must randomly add “ambiguous,” “subtle infiltration,” (of what?!) and “but no definite evidence of disease” to the scan report. The goal is to communicate to the patient, “You might have cancer MAYBE, but you might not.” The patient will be like, “Gee, thanks for clearing THAT up!” and will probably proceed to bang their head repeatedly into nearby walls or furniture. You may want to keep a tranquilizer gun handy, in case it becomes necessary to subdue a confused patient who is ramming their head into a table or you just want some target practice.

Have fun with your summary reports – be creative. Maybe you could add “if you hold the scan ten inches away from your head and squint, you can see a lytic osseous lesion resembling a zebra holding an umbrella.” Or perhaps you could quote George Washington randomly. You are only limited by your imagination!

Once you have added enough nonsensical statements and informed them of the presence of Michael Bolton on the scan, be sure to conclude with “otherwise normal.” This is basically saying, “You may or may not have cancer, but otherwise you’re healthy!”

Congratulations! You have just completed Radiology 101! Now go scare the heck out of some people for no reason!

I'm Not Dead Yet

In the movie Monty Python and the Holy Grail, there is a scene where the overtaker is wheeling around a cart of dead bodies from the plague. He comes upon an old man who is near-dead, but he refuses to get on the cart because he is still alive. In his immortal words: "But I'm not dead yet! I think I'll go for a walk! I feel haaaapyyy!!!" And then he gets bonked and put on the cart. After eleven rounds of mustard-gas derived chemotherapy (seriously, Cytoxan is chemically intravenous mustard-gas and I totally believe it based on the side effects) and being maxed out on all the radiation that my cranium can ever get in a lifetime - well, "I'm not dead yet!!!"

(Me getting on the modern-day plague cart after all. I'm wearing my wig because you have to look good on the ambulance!)

So I have only three chemotherapy sessions to go. If I can go without a blood transfusion or a platelet transfusion or hydration or a dangerously high fever or my stupid kidneys deciding to stop working or chemotherapy-induced mucositis (don't ask). I should only have two weeks left in the hospital, along with weeks in between each session to recuperate. Then one more surgery to get my central line out. This will put me done October-ish. After almost a year lost in cancer land, it will be over!

(This is my central line. It saved my life, but it made me take sponge-baths for almost a year because you can’t get water on it. I have never forgiven it for that.)

Le Prologue

This is totally out of order, but I finally got around to writing The Prologue (the italics are meant to convey pretentiousness). I had originally published this back in July, but took it down because it is so deeply personal to me. Anyway, I thought about it and finally got over it.

“I won the crap lotto” is one of my standard answers whenever anyone asks about my condition. In Medicalese it is called primitive neuroectodermal tumor, but it’s much easier to call it Ewing’s sarcoma. Eighty years ago Dr. Ewing discovered a rare form of bone cancer (it’s actually more complicated than that, but I’m only capable of writing the Cancer for Dummies version). Only three in a million people get it, which makes it on par with the odds of a scratch-off ticket. My grandfather bought me a bunch of scratch-off tickets for Christmas, because as a family we believe that gambling = family cohesion. We played poker for Christmas and have reunions at casinos. Anyway, I didn’t win any of the stupid scratch-off tickets. But I did “win” this. As I have learned in Poker, you play the hand that you are dealt (crap, I never win that either!).

Me contemplating whether to call or hold at the Texas Hold’em family Christmas tournament; I evidently chose the wrong one, because I lost.

Because it is a pediatric cancer, I am the geriatric patient at a children’s hospital. The treatment requires that I spend somewhere around 200 days there. I went into this thinking that I could be a good role model for the kids. Hah! That is the exact opposite of what happened. There are little warriors up there who have endured years of chemotherapy and a bone marrow transplant, and yet they are smiling. I am a total coward compared to some of them. One of the nurses is ex-military and gave his purple heart to one of the kids up there; that nurse and kid are both amazing people. Meeting some of the kids and staff on that floor has been such an honor. When I think of role models - I think of them.

Fun with lasers!

I have no idea why, but I wanted to record all of this for the family photo album. It’s kind of sick, but I cherish these photographs. I am the unwilling host of an alien parasite which lives in my right lower mandible. Think the movie Alien, but it is called Ewing's sarcoma. This is the unedited story.

This resident said that I was "an impressive case." Go me! Oh, that's Medicalese for "I'm glad I'm not you"? Crap!