One and Two and .....

Bad things happen in threes.

I got breast cancer.

My brother flipped my mom's open top Jeep while NOT wearing a seatbelt, broke the windshield with his head, broke two vertebre and fractured his tail bone in two places.

This leaves me worried about lucky number three.

On Getting Buzzed

On Thanksgiving eve of 2007, my hair started falling out.

This is, of course, to be expected, mostly because all of my nurses and doctors have told me that it WILL, without fail, fall out within 2-4 weeks of my first treatment. Mine was within 15 days.

I’ve said all along that when my hair started falling out I would simply shave my head and be fine with it. I was resolved to take it in stride, to brush it off like it was no big deal and not let it bother me. I told everyone that I would be a-ok and that it didn’t matter and that all I really needed to do was prepare myself for the event by cutting my back length hair very short, which I did… twice.

The thing is that it is a very unsettling moment when you run your fingers through your hair and come up with an unusually large quantity of it in your hand; in that moment even the most determined heart suddenly falters, for it is in that moment that all of the inward feelings of sickness are prominently and violently expressed in a physically outward manner that causes the brain to almost shriek, “Oh God, I’m actually as ill as I feel.”

So at first I was a little upset. Within this upset, however, I found new energy which I used to empty the dishwasher, do the dishes in the sink, make corn bread for my stuffing recipe and mess up part of another recipe. As the adrenaline high wore off, though, I resorted to calling my mom.

I couldn’t stop running my fingers through my hair and then looking to see how much I’d collected, though, and so while on the phone with my mom I decided that I ought to put my hair in a glass to help keep it from getting into everything. So for about an hour I sat on the phone with various people while running my fingers through my hair and placing all of the loose strands in a cup. Now, while there is something absolutely mesmerizing about effortlessly taking the hair from your head and placing it in a cup before you, it is equally disconcerting and has the ill effect of causing a resolute mind to crumble just long enough for the affected soul to release her frustration in the form of unwanted and demanding tears.

It is in this confusion of weakened resolve, frustration and strangeness that I found myself desperately wanting a razor to rid myself of the increasing burden of my hair. Unfortunately no one had a functioning electric razor in their possession at that time, and it was late and I was tired and at least 20 minutes from the nearest 24 hour Wal-Mart; thankfully, however, I have been incredibly fortunate to find myself in the company of amazing family and friends, and my mother and father drove to Wal-Mart at 10:30pm, bought me an electric razor, and then drove 20 minutes each way to leave it in my unlocked car so that I might use it in the morning.

The next morning Bryan and I stepped outside and unceremoniously shaved my head.

And so it came to be that on Thanksgiving 2007, I sported my new buzz cut with bald patches at two family dinners, was thankful for my friends and family in a whole new way and minimized the amount of hair in my stuffing.

Slicing Tomatoes

After I got home on the first day I didn’t want to go straight to bed. I wanted to stay up for at least a little while, so I decided I’d make salsa.

I got all of my ingredients out – the tomatoes, mango and onion were all in a bowl on the kitchen counter, the spices were in the cabinet and the cilantro was in the refrigerator. I was feeling very sluggish and a bit spacey -- almost kind of drunk, but in a very uncomfortable way -- so I was being very slow and careful with the knife.

As I was slicing the tomatoes, which were room temperature, I discovered that my sense of touch had been altered by the poison that had been slow dripped into my veins an hour earlier; I was acutely aware of the feeling in my fingertips, and while carefully cutting the tomatoes into small bits, I noticed that the juices felt unusually cold, almost eerily cold, like that skin tingling chill that comes from a damp wooded area on a warm night.

It was very strange, and I tried to explain it to Bryan, who was in the kitchen with me, but then I discovered that my brain had been poisoned as well.

Like the Skin Under Your Fingernails

It hurts.

Oh yes… it hurts.

It isn’t muscle pain – no, it doesn’t hurt when I lift things or move things or crouch a certain way – and it isn’t bone pain - I don’t have that flu like aching/throbbing throughout my body.

No.

It’s my skin.

It’s every single layer of every inch of my skin, burning, tearing and screaming with every friction inducing movement.

It doesn’t matter how soft the touch is, how soft the material is, or how cushioned the area is… it hurts. Wearing clothes hurts because they just can’t be soft enough and they slide and pull; laying in bed hurts because there is pressure, soft, cushioned pressure; being touched hurts, even by the softest most loving and well intentioned hands, even just a hand on my shoulder, even my own hand on my own arm or my own fingers through my own hair.

A light hand on my forearm asking if I'm ok brings with it a hot wave of pain through the entirety of the skin between my fingers and elbow, and a sweet kiss on the cheek makes me dizzy with aching and brings tears to my eyes.

The least painful position to be in is standing with my hands resting on the backs of chairs or on a counter top or anywhere but by my side, and the most comfortable thing to be in is the softest blanket I could find, ever so carefully and loosely wrapped around me so that I don’t need to hold it or apply unnecessary pressure to any part of me.

I wonder how I’ll fall asleep tonight.

Conflict of Interests

I had never wondered what it would feel like to receive chemotherapy until I found out that it was entirely likely I was going to be required to experience it first hand. Once I discovered that I would indeed be finding out exactly what it was like, I timidly pondered the various possibilities in the recesses of my curiosity, but generally avoided thinking about it. There was only so much timidity my mind would put up with, though, and the three days prior to my first chemo treatment was a grotesque orgy of nervous speculation. But it was cathartic, and on Tuesday the 6th of November I swept into the Cancer and Blood Disease Center like a cool breeze and went through the motions like there was nothing curious about it.

And nothing new, different or odd occurred on that morning/afternoon, I know – it’s been going on for years, infiltrating millions of people’s lives and improving with the evolution of science and medicine – but it was all new and different and previously nerve wracking to me.
When the time came for it to infiltrate my little world, though, I was as prepared as I could be and grinned, bared it and took it like a champ; a champ that stayed in bed for most of the rest of the day afterwards, but a champ nonetheless.

It was a slightly strange thing to experience because every evolutionary instinct that has kept our species in existence was kicking and screaming at me to get away from that stuff immediately. Of course this reaction didn’t happen right away because they don’t start administering the chemo until about an hour into the process, but as soon as those toxic substances began eroding my veins and waging war against my entire cellular being, my life energies demanded that I rip the iv out directly and find means to a blood transfusion forthwith.


Here’s what happens:

First they do blood work, because they always do blood work. The vein in my left arm is getting really pissed off about all the stabbing and sucking that is being done to it on at least a bi-weekly basis (they can’t take blood from the right arm because that’s the side I had lymph nodes removed from)and it has recently started to refuse closing up after blood is drawn, figuring it might as well just stay open permanently.

After they do the blood work and decide whether or not you’re well enough to get chemo, they send you in the back where all of the treatments take place. It’s basically one very large room separated into a couple of different areas by tall book cases and dividers that section off a nurse's station, a couple of patient areas and a little family waiting area.
You walk down a long, meandering hallway from the waiting area and through an archway; ten feet back is the nurse’s desk. Beyond the nurse’s desk are tables, book shelves, filing cabinets, storage closets, and mixing areas; basically the typical kind of nurse’s station you'll find in any medical facility, except this one has a very high concentration of highly toxic chemicals meant to be injected into people. All along the walls behind you to your right and left are these old blue recliners with a plastic type material covering them, and next to every recliner is a metal bag hanger on wheels that they hang the saline, steroids and chemo from. On the far right hand side is the family waiting area, and just beyond that is the main treatment area with new, cloth covered recliners and metal bag hangers, some TV’s and magazine racks.

Anyway, so you go back there and hand them your paper work and they sit you down, ask you a bunch of questions and stab you with an iv. In my case, I have a port, which is really good because that will help to preserve my veins in the wake of the toxic chemicals that are supposedly going to cure me, and when they put the iv in my port, they call it “tapping the port,” what they do is they have this fat needle with this thimble like top with wings that they insert with a harsh stabbing motion. Now when I say stab, I mean they push that thing in hard, and I am pretty certain that the nurse that "tapped my port" the first time has never had a port or known anyone who has had a port, because when I asked if it hurt, she said that it would be a pinch because it was going through skin, but that wasn’t a pinch, that was a stabbing pain, and it burned... oh did it burn.. it was like the needle was coated in acid, lemon juice and salt all at the same time, and it hurts when the port gets pushed on anyway, and they pushed hard!

After they “tap the port” they drip the premeds – saline and steroids – through the iv. That takes about an hour.

Next is the Adriamycin (Doxorubicin), which is red and comes in two very large syringes. It is slow pushed in by a nurse over the course of about 20 minutes while saline is simultaniously dripped in from a bag. They have to do it slow and dilute it because it’s very irritating on the veins.

Then they hook up the Cytoxan. It slow drips from a bag for a little over an hour, again with the slowness because it’s harsh on the veins.

The last thing they do is flush it all in with more saline, and then use a syringe to inject some blood thinner so the port doesn’t clog up, then more saline to flush that in.

By the time I left I was exhausted and within two hours of being home I crawled into bed and stayed there for the rest of the day and night. There is no way to describe what my body was experiencing other than to say that it felt like I’d had poison slow dripped into my veins over the course of a couple of hours. It was a kind of masochistic slow torture that went against my every instinct.

Things for Reasons

It would seem to me that the very nature of retrospect is, in all of its profundity, to be a bitch. I mean I suppose if I were to go back in life I wouldn’t change anything, fearing the upset of my own nature, but I must admit that I would be tempted.

Take, for instance, that time with the Tic-Tac when I was nine and my little sister was five and a half: We both loved Tic-Tacs, especially orange Tic-Tacs, and every now and then my mother would give in to our pleas in the check out lane at the grocery store and buy us a container of orange Tic-Tacs. Well that night Carrie went to mom to ask for a Tic-Tac for each of us. A few minutes later she comes back and hands me this teeny tiny little piece of the Tic-Tac. The piece is so small that if it were accidentally consumed it would trigger your senses to crave an orange Tic-Tac, although you wouldn’t realize that you had in fact just the moment before swallowed a fragment of one. Anyway, so she hands me this thing, and I take the little shard from her, sneer at the fleck on my finger, stomp angrily over to the trash can and make an exaggerated point of lifting the lid off, throwing the fleck into the trash and thrusting the lid back on while exclaiming, “What am I supposed to do with that, cough on it?” Carrie looks disappointed and uncertain of how to react. My mother, sitting at the kitchen table through the whole episode, looks up from whatever it was that she was doing and demands that I “come here right now.” So I do, still angry, and she explains the situation to me. Apparently there was only one Tic-Tac left in the container, and Carrie, in all of her caring and thoughtfulness went to my mom and asked her to cut the Tic-Tac in half, to which my mother said no because it was too small and that she could just go ahead and eat it. Well this did not bode well with my sweet little sister, so she took the liberty of biting it in half to the best of her ability, to which I responded in the most ungrateful manner I had ever or have since responded to any situation. I immediately wanted the chance to do it over again, to take back my insult. How could I have possibly treated her with such utter callousness and disrespect when she was treating me with such warmth and sincerity?

The guilt I felt when my mother told me what my sister had done burned the scene so deeply into my memory that I still feel bad about it to this day. As a matter of fact, I feel the need to call her right now and tell her what a wonderful sister she is and how grateful I am to have her in my life.
Carrie doesn't remember; I, on the other hand, have never been able to forget it or forgive myself for behaving so poorly. But it was one of those pivotal moments in childhood that forms how you are as an adult, and to change how the scene played out would have ultimately changed my outcome as an individual, and I’m pretty sure I’m an ok kind of person at this point.

So yeah, retrospect. It’s made me wonder, “What if?” at least seven hundred sixty thousand fifty nine point five times. At least. But then, on the same token, I always wonder how I would be now if things hadn’t played out like they did, and I find myself feeling incredibly happy about life in general.

But this feels somehow different, and I find myself wondering “What if?” and wishing I could go back and change my course of action. I know that in essence it’s exactly the same as anything else that anyone would ask “What if?” about – it’s the same as the incident with the Tic-Tacs, the same as that time Mike and I moved to Austin and the same as that night Rachel and I were hiding from on the roof at Medima’s and the Blue Heron flew over our heads – but, regardless of it’s underlying similarity, it still feels different.

I often wonder how much sooner I would have caught it if I’d done regular checks. Would I have found it before it was invasive? What about if I’d gone ahead and gotten a scan while I was still in England? Would that have made me take action sooner when I got back to the US? Or would the English doctors have treated it as equally unimportant as the Health Department doctors? What about if I’d listened to my own damn instinct and demanded that someone help me out? Why did I tell myself to shut up and stop being silly? And why didn’t they give me the ultrasound report in the first place? That would have caught my attention and made me run to a surgeon for a biopsy. But they didn’t, and instead I took my sweet time, because why should I have been worried when they seemed so unconcerned about it?

I could “What if?” all night. I won’t, though, because that kind of speculation is frivolous now, isn’t it?

I suppose I could stomp, yell, complain, cry and be angry, too, although I think that’s hardly useful for anything, not to mention I don’t feel like it. But I’m fine – really I am. And that’s what I tell people, although they don’t seem to entirely believe me.

I’m ok, though, I think. At least for now.

But what about when I start pulling chunks of my own hair out? What about when I feel sick to my stomach for no apparent reason? What about when I just can’t do it because I’m too tired? What about when those wonderfully familiar tastes and smells turn foreign and putrid? Then what will I say when they ask, “How are you feeling?” How will I be then?

What is this going to make of me?