Rockin' the Friar Tuck and Other Such News

My friends and family, being the sweet and caring people that they are, never told me that I had a bald spot on the back of my head. I knew that the hair on the top of my head was very, very thin (so thin that you can see much of my scalp), but I had no idea that it was THAT thin in back. It looks extra stupid because I have perfectly fine hair around the sides of my head, making it seem like I'm one good shed away from looking like Friar Tuck. At first, I thought that the hair that was was left was growing long in the back and I thought I'd be destined for a mullet, but NOW I think I might be destined for the monk look. Oh, I'd give anything to have a mullet instead! Let's hope that my hair comes back on top and FAST! I need it for the Smith reunion and I don't want to look like a middle-aged, balding man when I see my fellow Smithies. Otherwise, I might have to hear a stupid sun hat or something and that would ruin the outfit I've already decided to buy for Ivy Day.

Radiation therapy went fine. No, my skin did not crackle like I feared and I survived. The first "live" treatment was a little longer than intended because my radiation oncologist wanted another X-ray with all the little doo-dads in place to make sure everything was a-okay. So, like before, I undressed and donned the blue printed patient gowns and laid on the radiation table. They helped my arms out of my gown and covered my breasts with strips of cloth (for the sake of modesty/comfort...they have to radiate between them anyway). The technicians told me to go totally limp so they could scoot me around in all sorts of fashions in order to get me into the perfect position as practiced in the simulations. They fastened the Hannibal mask onto the table, stabilizing my head. They lowered the radiation machine, which looked remarkably like an over-sized dentists' lamp and installed these sheets of glass that rested just underneath the opening of the radiation machine. On these sheets were all sorts of notes about positioning and where the radiation block that shielded my thyroid was supposed to be placed. I noticed, as well as I could from my Hannibal mask, that they were measuring with rulers and lasers and all sorts of other fancy equipment, making very tiny and precise changes to the alignment of the gear and my body, making placement notes with a black marker. They placed a large rubber band around my toes to prevent wiggling and taped my arms down to the table and scurried out of the room. I guess they wanted to hurry because the positioning they used for the treatment is extremely uncomfortable and the room was terribly cold. They took a couple of X-rays with the machine. It whirred and hissed for a few seconds and shut off.
After a few moments, the technicians came back to tell me that the radiation oncologists were pleased with my placement and the plan, so it was time to receive the first treatment. Suddenly, my heart began to pound and a feeling of anxiety began to well up in my chest. The technicians patted my hand and told me that I was doing great and that the treatment is painless and fast. I mumbled a "thnnkyuw" and I heard the familiar humming of the machine as the giant 'dental lamp' rotated above me, stopping a mere 7-8 inches above my chest and neck area. The techs scurried out of the room and closed the door behind them. In the distance I heard a faint clicking sound, which was the machine priming itself, and then the actual radiation followed; making a great hissing noise that sounded something like a subdued tattoo machine on full blast. The noise sustained itself for approximately 15-20 seconds and stopped. I felt nothing, but my ears were ringing just a little and I felt slightly jarred by the noise it made. The techs rushed in again to check on me and to rotate the machine. The great thing rotated underneath the elevated table I was laying on and stopped behind me at a lateral angel. The technicians again rushed out of the room and the machine was turned on. Another 15-20 seconds of the hissing and tattoo-gun-sounds and that was it.
Immediately afterward, the techs unlatched my Hannibal mask and removed the tape from my arms. At this point, my shoulders were screaming and it felt amazing to finally stretch. (I really underestimated how HARD that damn radiation table was going to be!) They helped me back into my gown and told me that I was free to go. They also told me that the next day's appointment would be even faster because the plan was solidified now. No more need for scans and X-rays, so it would literally take less than 5-10 minutes for set up and treatment. When I got back to the changing room, my skin felt and looked fine, except for all of the random black marks and notes the techs drew on my skin. With a good scrubbing and shower, the marks came right off. It is only mildly embarrassing to leave the radiology department with basically roadsigns marked on your neck that scream, "I HAD RADIATION TODAY!" Check out my pictures after the jump:




So far, so good, but the nurses cautioned me because I am getting radiation directly over my esophagus. I will most likely develop a condition called mucositis. The radiation kills off the cilia that lines your throat and esophagus, resulting in extremely painful swallowing, sore throat and reduced saliva. I'll have to swear off eating anything crunchy, sponge-like, or spicy/hot. On the list they recommend foods such as, cream of wheat (yech), soup, smoothies, yogurt, ensure (double yech), and other easy to swallow foods. In other words: PUREED. (triple yech!!)
In addition, the radiation will be grazing my lungs, resulting in a residual cough (that may or may not go away) and reduced lung capacity. Great. Not like the Bleo (the B in ABVD) didn't already take care of that! Uhm..I'd like to get back to my normal life, including my yoga class. You can keep all of those nasty side effects. :(

...How do you want your eggs?

Tomorrow is my second radiation simulation appointment. They're going to take additional scans of my body to calibrate the machine and do a "dry run" using the foaming blocks (used to keep me absolutely still for the treatment). I hear that radiation is SO much easier to deal with than chemotherapy. But whenever I think of what radiation will be like, I keep thinking about the skin irritation that commonly results. I ask myself stupid questions like, "Will I feel my skin burning?" or "Will I hear it sizzle?", as if my skin will make noises like a fried egg under radiation. I know it sounds silly, but I am totally afraid of feeling any sort of pain during the procedure. The technicians keep reassuring me that the live procedure lasts less than 1-2 minutes total. They say that any sensitivity I feel will be more like a sunburn that you didn't notice you were getting while lying out on the beach. I sure hope so! I don't know if I could handle the sound of my skin crackling and sizzling, even though I'm positive that is just my imagination running wild!

Moving Forward (cue dramatic music!)

Apparently, after having cancer, everything is supposed to seem just a little "different". The leaves are a little greener, food tastes better, and every sunset is just a touch more golden. Honestly, everything looks and tastes the same to me. The leaves are green, food is nourishing, and yes, the sun sets. But nothing feels or seems different, other than my level of post-chemo energy. It aggravates me when people say that they had some sort of epiphany as a result of having cancer, like they found Jesus or that they have a "new take on life" or something.
Personally, I have learned NOTHING spiritually or emotionally useful from having cancer. Sure, I've picked up all sorts of fancy doctor language, long acronyms, and intimately understand what it is like to undergo various painful and violating procedures you only hear about on episodes of "House". I've learned that insurance companies can put a price on your life and that even fellow cancer survivors can still be real assholes, no matter how many "epiphanies" they've had. I've also had the illustrious privilege of receiving a $10,000 statement from my treatment center and various bill-grants refused, simply because I had student loan income the year I was diagnosed. I've learned that I don't qualify for insurance (or I have to through the nose for it), simply because of one random, mitotic mutation that precipitated my cancer development and that having only one PET scan, costing 7K each, a year is "enough". (I need one every three months) I've learned that hospital accountants are real assholes with no semblance of human compassion/are robots trained to squeeze every last dime from you and that it is more important for me to pay my hospital bill immediately than to focus on getting healthy. I've learned that money has become the pivot point of our country; things get done if you've got the money...you can see a doctor, you can prevent cancer, you can get your illness treated right away, you can receive competent and compassionate care, you can even buy yourself fake sympathy.

Grad school: Oh so Helpful

I've been contacting my professors, asking them what kind of plan I should formulate in order to finish my classes. They all gave me incomplete scores for last semester's coursework. Let me preface this by reminding our lovely readers that cancer and treatment basically becomes the center of your life when you are diagnosed. It is not something that can easily be balanced with the rest of your life; thus resulting in me dropping everything and moving to Seattle to get treatment once I found out I have a grapefruit sized tumor in my chest. It goes a little something like this: Chemo, recover, recover, recover, recover, recover, hair falling out/vomit, recover, feel semi-normal for approximately three more days, chemo.

Rinse, repeat.


Furthermore, chemo has taken a toll on my memory. Not only do I forget the simplest of things, but I can hardly tell you what it was we were discussing in class over 5 months ago! To pass my classes, they want me to not only finish the basic requirements, but to do additional work to make up for missed in-class discussions. I think this is stupid, pointless busywork and it's just more bullshit that a student with cancer has to put up with. Do they REALLY think that students were actually participating? Half the people in the class didn't even talk or contribute, yet they're probably going to get full discussion points anyway. Wanna know why? Because no one, not even professors, take participation points that seriously. It's just so they're not standing there with nothing to say once class time rolls around. Honestly, a paper for each class missed...?
Also, I'm going to have to reread everything for my classes. Chemo has affected my memory so severely that I'm going to have to relearn a lot of things already covered. I have to take a pre-lims style final in order to finish this class...I'm going to have reread everything anyway. Mind you, rereading everything is no easy task. That's a lot of material! I was also supposed to have a rough draft of my thesis completed, but I've still got some more work to do on that.
In sum, I have no idea how I'm going to finish all of this without dedicating all of my time to it. Where money is going to come from, I don't know because I can't work and go to school at the same time right now. Just not feasible. I'm going to ask for a full semester to finish this stuff, otherwise, I'm going to make myself sick trying to do it all.

Fava beans and a nice chianti...

Yesterday was my radiation appointment. The radiation oncologists were both really nice and very, very thorough. They verbally went through my medical history, where I first noticed the lump, how I reacted to chemo. Luckily, I only have to have radiation for four weeks!! Not the 6-7 weeks they originally had thought I would need. I will be receiving an extremely low dose (3,000 r) compared to other cancer patients. Apparently, dual modality treatment (chemo and radiation combined) is extremely effective against my classic nodular sclerosing HL. The unfortunate part of this whole business, however, is the fact that my cancer was discovered a mere few inches away from my thyroid. For all of you non-doctor types out there reading, your thyroid is a gland that secretes important hormones (specifically triiodothyronine and thyroxine) needed for every day functions. It is located near the adam's apple in your neck. It's responsible for a crap-ton of important stuff such as cellular metabolism, maintaining body temperature, and properly storing and utilizing calcium. The radiation treatment necessary to prevent my cancer from coming back will pretty much decimate my thyroid gland and result in secondary hypothyroidism, making me dependent on daily oral medications that mimic the production of thyroid hormones. Hypothyroidism is responsible for a host of yuckie symptoms such as brittle hair and nails, dry skin, low energy, weight gain (as if the chemo and prednisone didn't already do that!), sensitive to cold, constipation, depression, fatigue, and joint/muscle pain.

Sounds like chemo ALLLLLL over again except for the rest of my life!

There may be a slight chance that my radiation, being so low-dose, will only cause sub-clinical hypothyroidism, but still...another thing I gotta worry about.

Anyway, after we talked about our plan, I was escorted into the simulation room. On the docket was a CAT scan, tattoos, and the creation of positioning mask for radiation. The nurse that was attending on me had a thick Southern accent and called me "darlin" every couple of sentences. She gave me a gown and asked me to undress from the waist up. They explained that they needed to do a CAT scan which would give the radiation oncologists a baseline of my body so they can determine the specific points inside my body where the radiation will be aimed. This needs to be as precise as possible so they can reduce the amount of healthy tissue damage (which puts me at risk for secondary cancers). The CAT scan takes a bunch of pictures in "slices"; kind of like cutting a birthday cake and being able to see all the layers of cake and frosting. They want to be able to see exactly where inside my tumors were so they can determine a good margin of error. Not only will they be radiating exactly where the structures are, but they will be doing a little around it, in case some stray cancer cells decided to wander outside of the premises.
So, I undressed and laid down on the CAT scan table. The nurses explained to me that in order to access the area under my neck, they had to tilt my head back. Tilting your head back that far is HARD, so they made me a special mesh mask that helps keep my head really still and in the perfect position. The mask making kit was a little like a warm, wet tennis racket... They heated up the mesh with hot water. Then the plastic mesh was pushed directly over my face and locked to the board underneath. It make me feel a little like Hannibal Lecter from Silence of the Lambs. Hello, Clarice...


The nurses pressed on the mesh to force it to conform to my facial features and turned on cold fans to help it harden. After the mask was formed, they took some tape and made some marks to help remind them of my positioning. They marked my arms and chest with a sharpie and completed the scan. Afterward, they removed the mask and took a sharp needle and gave me four freckle sized tattoos. These help align my body in the machine the same way each time. The little tattoos on my chest and between my breasts hurt like a bitch! My next appointment is in three weeks allowing me lots of time to start feeling normal again. It's not the actual treatment, but a simulation with the the actual radiation machine. They'll create these nifty foam blocks that will conform to the shape of my body and cover healthy parts of my body. Then they'll do a "dry run", which is essentially a practice session without radiation.

And all I have to do is lie there and go on a mental vacation! :)