Sunday, August 22, 2010

The Daily Grind

It has been a long time, hasn't it? Lots to catch up on, I suppose. Yes...lots indeed.

First off: I have indeed started chemo. I go in for my 4th and final A/C (adiamycin/cytoxan) treatment on Tuesday, then for my last four treatments, I will switch to taxol and herceptin. For the most part, I have been doing fantastically well as far as cancer treatment goes.
I go in, have all my stats checked, and get my port accessed. That looks like being thumb-tacked in the chest with a 1-inch needle. Turns out my port is rather aesthetically pleasing, you can barely notice it's there, whereas some ports look exactly as though the person has a cat's eye marble under their skin. However, that means mine is deep and can be somewhat hard to access. It's really no big deal, I just have some uncomfortable multi-poke sessions sometimes.
After I'm accessed, I wait for a short period, then get set up in an armchair to begin treatment. Each drug is administered one at a time, starting with a little bit of saline and my two anti-nausea meds. Then I take each of the nastier drugs. The whole injection process takes about 2 hours. I feel slightly odd as everything is going in, sometimes I get headaches-- and I taste it immediately. Mostly, things just taste like metal, exactly as putting a handful of coins in your mouth would. Or perhaps like licking a chain link fence, that might be similar as well. That taste lingers in my mouth subtlety for five days or so, sometimes more. It sure makes wanting to eat food a real trick.

Food has been my most consistent struggle. Those few days afterward, food is the last thing I want. I haven't thrown up once due to treatment, or come anywhere close to it, but in the midst of those few days, even the idea of chewing something makes my stomach turn over. I get really sensitive to smells for a while, too. Not so much the way things actually smell, just the way I perceive them-- my senses get all messed up and things smell and taste differently than they truly do.
I smelled Sean after a particularly sweaty bike ride one day and even though I knew that he probably smelled sour and ripe in reality, he smelled deeply sweet, like fresh-cut peaches to me. Unfortunately, delicious wonderful foods like my grandma's cooking sometimes smell like feet, metal or sewage to me as well. It's a strange game.
The only way I've found to consistently replace any sense of appetite is somewhat, ahem, illegal. It's a beloved pastime and now, a means of maintaining my health. I tried on my second treatment to manage my intake of food without it and lost 13 lbs in 3 days. I could not force myself to eat-- that soul-sapping inability is almost impossible to convey to a person not in treatment. So I'll just run with self-medicating. I'd so much rather be shady than starving, and that's all I'm going to say about that.

I've been somewhat disappointed at the foods my body craves most, as well, only because I wish I was craving healthier things. Before diagnosis, I ate mostly vegetables, fruits and whole grains, made a point to know where my food was coming from and chose organic, high fiber, low saturated fat, and almost no synthetic sugars or salts.
Now, the things I crave most are sugars and fats because they are the things that taste like themselves. Fruit, candy, juice, pizza and even french fries almost always sound good to me and it makes me sad. Spinach, romaine, artichokes, zucchini, green beans, red lettuce, bok choi-- all things I LOVE that now taste like metal. Generally speaking, the more mineral rich a food is, the more it tastes like metal. As a new parlor trick, I can also now tell you how hard or soft your water is. Meat is back and forth, but I don't really like to eat meat anyway. I don't want the little food I am able to eat to be unhealthy and I try hard to make sure it's not. It's just a difficult transition to live with: I was proud of my eating habits and food knowledge, it's a big deal to me, but now it's as if I'm a new person with a new palette and I don't like it. *sigh* Oh well, it'll come back eventually.

My latest treatment was the hardest because I went into it a tad out of sorts. I had just spent the weekend at Misty's apartment in Bountiful house and cat-sitting. I'm allergic to cats, but I can usually hack it just fine. However, three days in a cat's domain worked me over. I was coughing, sneezing and bitching, having trouble seeing through watery and swollen eyes-- then went into treatment. My cough progressed into a deep, throaty pulmonary virus and I had my first fever. I am supposed to report any temperature of 100.4 or higher (that's considered a big-deal fever for a cancer patient) and mostly likely, start my antibiotics. Luckily, I rode the cusp of 100.4 then went back down again so I narrowly avoided taking those nasty antibiotics.

I've been weird about medications. I always am. I hate taking medication. My first treatment, I refused to take my dextramethisone (key anti-nausea med) because I didn't want to take a steroid anymore than I have to. My second treatment, I refused dex and Emend, my other anti-nausea med. The way I figured it, I may be sicker and have a harder time with my stomach, but at least I wouldn't have to endure the slew of side effects my disgusting cancer meds bring on. Turns out, I am lucky and don't get nauseous like most people do so I don't need the medication anyway, but I was appalled at the landslide of skepticism and nay-saying I got from my doc and nurses.
They thought I was being stupid and stubborn and didn't support me. I thought that was rather harsh. I understand their perspective, not wanting to deal with me if it turns out I can't eat for days and have to come in for saline or a blood transfusion, or have to skip a treatment because my counts aren't high enough due to malnutrition-- but to tell a patient she's being stupid because she wanted to test her strength and protect herself from unwanted side-effects? That's unprofessional and rude, not to mention treating me in a general manner, like I'm just a young, naive cancer patient, not an informed and independent individual. I drew great satisfaction out of reporting to them that, actually, I'm doing fantastic without the meds, thank you very much.

The other part I wanted to mention was Neulasta. It is the fancy, new-fangled shot that I get one day after each of my A/C treatments. It's a new drug, new this year, and it's really helping a lot of cancer patients out. It stimulates bone marrow to produce more blood cells so that your counts don't diminish as much as they normally would. If my counts are too low come my next treatment, I have to skip one, which is heartbreaking news-- no one wants to do this longer than they have to. With the shot, my counts drop for a week like normal, then skyrocket back to more than I had before I started treatments. It really helps to keep me on track with treatment as well as protects me from infection and germs.
The downside to Neulasta is that it costs $6,125 a pop. Because its makers are still in the first year of their patent, they can rake it in at highway-robbery prices for a few more years before having to compete with generic prices. The way that entire system works upsets me. I don't have to worry about the price because it's covered by my insurance, but what about people who don't have as good of a plan, or worse, no plan at all? They can't afford it and have to go on as people did before them, juggling their counts all on their own.
And what would that do to my insurance? Were I still on a group plan (I recently moved to COBRA), my choosing a brand name medication of that price because I have no other option would raise premiums for my entire group because my insurance is footing the bill and needs more money coming into the pool in order to cover it. It's messed up. I hope that all this reform we have moving through will eventually touch on extravagant prices charged for brand name medication inside a patent. I know they have to cover the costs of testing, production, labor, etc, but give me a break-- charging the old and sick $6100 for something they damn near need is absurd.

Anyway, that's how the treatment part of cancer is going for me. On my down days, I read, watch True Blood (such sweet, succulent obsession...), facebook like it's going out of style, play video games on the PS3 Wyatt has so generously loaned me, write, play board games or enjoy time with Sean. I can't really go out in the daytime as the heat really beats me to the ground, but I try to go on walks in the evening and hike when it's raining. Those types of activities are usually left for upswing weeks though, on a really low down day I have difficulty walking to the end of the driveway without taking breaks.
I'm also a full on baldy now and I'm quite fond of it. I get a surprising amount of cat-calls and congratulations from total strangers on being bald and "being brave." That compliment is strange to me. I understand that it might be embarrassing for some women to go out without a head covering of some sort, but I wouldn't say that embarrassment is a sign of weakness, so adversely, I don't see unabashedly showing my head as strong-- I just don't care. I look like what I look like and right now I'm bald and have one boob, so that's what I'm going to run with. That's not bravery, that's apathy. :)

After my second treatment my hair was rapidly falling out and it was getting to be not only messy but a little gross. It's kinda nasty to wake up to a pillow covered in hair. Even though I knew it was going to happen and readily expected it, in practice, it was still weird to watch. I kind of lost feeling in my hair follicles so when I tugged on my hair, it would fall out devoid of sensation-- super strange. I decided after a few days to just rid myself of it so I could stop vacuuming everything and getting hair all over Sean.
I took the clippers out to the side of the house, then thought better of it and decided to see how much of it I could pull out by hand before shaving off the remainder. It was a surreal and exciting experience, I mean, how often do you get to experience pulling out all of your own hair? It was bizarre but really fun. I just stood maniacally giggling on the side of the house, pulling out fistfuls of hair and watching them flutter down to the cement. I got a fair amount of it out before having to shave off the more stubborn bits.
Now, it grows in a little bit, mostly on my sideburns and around my face, so I have to shave my head a couple times a week. Guess it's good to know that it's ready to grow back as soon as I quick poisoning myself.

As far as appearance goes, the having one breast bit makes some clothes a little tricky, but for the most part, I either stuff a bra with gauze in shirts I can't really go bra-less in, or I wear shirts with built-in support and don't care that I look a little lop-sided. I actually get a big kick out of watching people quizzically try to figure out what's funny about the way I look without seeming to stare. The moment they figure it out is priceless. :D
I wanted to cover all of the nasty medicine-related parts of this first before going into all of the fun times I've had over the past month or so. Perhaps I'll include that in a separate post. The good times have been oh-so good.

Much love. Many smiles.

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