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!

The Dreaded Mark of Amifostine

Just like one of my favorite fictional protagonists, Hester Prenn, I now bear a brand beginning with the word A: the dreaded mark of Amifostine. For those who are fortunate enough to be unacquainted with the drug, it is a potent antioxidant given to those undergoing radiation or chemo in order to protect healthy tissues from the therapy. In Medicalese, this is a "radiation-protectant" or "chemo-protectant." Theoretically, this is supposed to reduce my risk of a secondary malignancy (getting another stupid cancer) and to preserve the function of my salivary glands. This means that if all goes according to plan, I should be able to hock a loogie after treatment just as well as before. Charming, I know. Let us keep our fingers crossed that this is the case. So what is this dreaded mark, may you ask?

The dreaded mark of Amifostine (aka a really crappy bruise)

For a medication that is supposed to be helping me, it sure doesn't feel like it. This is the story with most cancer drugs, unfortunately. So anyway, getting this shot is an entire production in itself. Firstly, the nurse comes in and takes your blood pressure. If you get the A-OK, the nurse then returns with an evil-looking 10 cc syringe (most syringes are only 1 cc!!) and a 4 inch needle, which she uses to extract the potion from a vial. Of course from the horror stories that I had heard from other cancer patients, I assumed that this needle would be jammed into my stomach via the 4 inch needle. So I decided to brace for the inevitable. When I saw the needle, I told Nurse L***, "I have had a spinal tap, a pelvic bone marrow biopsy done with a foot-long drill, and have been cut up more times than Frankenstein. You don't scare me." She laughed. "Honey, this is what I use to draw up the drug from the vial. This doesn't go into you." And with that she popped off the 4-inch monster and snapped on a little 18-guager, much to my admitted relief. Oh thank you Gosh! But not really. That little stinger really burns going in; it's like liquid fire!! (sigh)

A famous hand model poses with the scary needle.

Addendum: I gave a copy of my last post to my radiotherapist, and he did not seem to be overly amused. I was only joking when I called him Dr. Evil. I really think that he is quite nice! Perhaps it is not in my best interest to annoy people who have access to high-powered lasers and regularly point them at me. Always thinking ahead, I am.

I has been microwaved in the head - what's your excuse?

It's 2:45PM on a Monday afternoon. Deep in the cavernous bowels of the James Graham Brown Cancer center in Louisville, I am lying on a cold table directly underneath a gigantic multi-ton machine that hangs from the ceiling, intended to blast my cancer cells into oblivion. My feet wiggle back and forth as the touching love ballad “Smack That” plays over the intercom for my listening pleasure.

My mom called me elf-girl when she saw this picture. Hmph.

The technician comes in and lowers a mask strangely reminiscent of a horror movie serial-killer hockey mask over my face, and bolts it to the table so that I can’t move. When I reflect that Kentucky is geographically near an active fault line, I regret being bolted down to a table with something the size of a Cadillac dangling over my head. Only about a month ago, there had been a minor earthquake in the area. Nice.

This will be the photo that I put on Match.com for internet dating. What guy can resist a bald girl in a demented hockey mask?

I immediately regret my decision of two weeks earlier, when the radiotherapist had given me a choice: the Halloween mask or blue tattoo dots on my face. The claustrophobia induced by the mask makes me contemplate ways that blue tattoo dots could be incorporated into some sort of Samoan facial tattoo, which I try to convince myself really could be attractive. Maybe with just the right tribal design I could distract attention away from my Yoda ears...

Serial-killer mask time! Yee!

A hydraulic drone begins, and the table lifts itself six feet into the air, inching slowly upward so that it is proximal to the Cobalt source. The technician leaves. I want to leave too! I think as my head approaches what looks like a huge camera lens. The lights dim and a laser begins criss-crossing my face, as it pin-points the desired location for the radiation beam. The large machine begins to click, and then with a buzz it bombards the right side of my face with photons for 30 seconds. Poof! Poof! Poof! The little cancer cells are yelling AHH!!! and then going Poof! into a puff of cartoon smoke. At least they are in my head.

My highly scientific rendering of electrons irradiating cancer cells. I'm sure it will be in a medical textbook someday so that future radiotherapists can learn about poof-ification.

More clicking. A loud buzz emanates from the machine and then a beam of electrons hits my face. Electrons taste funny – kind of like chlorine (really). With a final click, the treatment is over, and I am aware that the table is lowering. The technician comes in and lifts the mask off of my face, which from my perspective feels very much like the unmasking in “Iron Mask.” I want to take a nap and am really sick of writing now, so this is THE END of my melodramatic radiation account!!!

My radiotherapist is Dr. Evil, and he uses Lay-ZURs. For my treatment, I am surrounded by sharks with lay-ZUR beams on their heads. They're outside the photo.