Today started early. I got up before Annabel's happy chatter and Teddy's grumpy moans began from their respective rooms, and I squeezed in 30 minutes on the elliptical. In that half hour, I listened to my newly expanded and shuffled Kick Cancer's Ass playlist (I knew the order of the songs so well that I would start singing the next song before it even started, so a fresh shuffle was in order). And in that time, I collected my scattered thoughts and emotions into better focus -- on the single goal of beating cancer; on teaming up my mind with all of the good parts of my body to defeat all of the bad. To me, each drop of sweat is a cancer carcass, and I love those.
At drop off, I tried to just keep moving forward without fully processing the sad thought of sleeping away from my kids tonight and possibly tomorrow night. The tinge of sadness was lessened by the excitement I heard in Teddy's voice when he told his teachers that he had a sleepover with Papa and Nana tonight. Then the remaining sadness was turned into strength by the hug that Teddy's school principal gave me. Sometimes a quiet hug is magically priceless, and this one was just that. Next, my Mom and I braved ridiculous Boston traffic to get into the Brigham & Women's Allergy Center.
The allergy appointments were, well, strange. I didn't know what to expect and the first few doctors we met weren't really great teachers. But once I got into the exam room to start the skin test, we got some more information about the process. I was slightly horrified at what I saw when I entered the room:
Oh me, oh my. What the heck have we here? It turns out not all of those vials were for me, but someone could have told me that, or even made a joke of it, because I assumed they were. I have learned a lot from being a patient, and the first thing is that what can be terrifying to a rookie is often run-of-the-mill stuff for experienced doctors and nurses. The truly excellent professionals (in the medical field or beyond) somehow keep a rookie lens over their expert eyes, always able to keep touch with the newbies despite that each day it is naturally harder and harder to do so. For instance, obviously every nurse and doctor knows their own name, what they do, and how they fit into my treatment plan, but when I walk into a new place, I often have no idea about those things. So basic information like that is key and it can set a meeting out on a good note or, without it, a bad one.
The allergy doctors were fine, although I wasn't really impressed with a younger doctor's explanation of the desensitization process as "one that seems to work even though we aren't really sure why." Seriously?!? I smiled a fake smile, but really I wanted to shake her and yell, Listen lady, just pretend you know why it works! Because I'm not keen on gambling on a procedure when a consequence is anaphylaxis! This doctor and I weren't really clicking so I cut to the chase and told her precisely the following: "Tonight, I hope to be admitted to the ICU for desensitization. What needs to happen in that skin test for me to get there?" She explained that I needed to have a positive reaction. Huh. I kind of thought I was not supposed to have a reaction. Again, world flipped on its head. Nope, it was clear that I wanted a mild red rash reaction under my skin to prove that I am allergic to the Taxol in a way that will allow us to try it again. Finally, almost two weeks after my failed Round Two, I had a clear goal.
The friendly nurse that performed the skin test brought my nerves back down. She told me that they do this all the time and she sounded hopeful for me. Ultimately, she made three pricks on my arm -- one histamine (H), one control (C), and one Taxol (T).
Then we headed to the waiting room to, obviously, wait. However, like I texted Brian, A watched arm never tests positive for a Taxotere allergy. The H dot itched like Hell. But nothing was happening on the T dot. Damn it. At least my big bruise from my botched infusion was almost gone. I tried to stay positive.
Fifteen minutes later, the nurse called us back in and when the doctor looked at the T dot, he said she should move up the arm to try for a reaction there. Same process, same waiting, same heart sinking disappointment that the T dot didn't turn red.
But shockingly, when we got back the exam room the second time, the doctor said that he thought he saw enough of a reaction to warrant a positive result. I didn't see it, and at first, I wasn't even happy because I didn't believe that what we needed to happen had, in fact, happened. It was very anti-climactic. I asked the doctor if he was sure, really sure, and he said he was. OK, then. Excellent! Advance to Go. (Collect $200?)
By this time, three hours had passed and my Mom and I were starving. We sat at lunch waiting to hear from the Brigham about the ICU bed; my cell phone on its loudest setting next to the basket of bread. With two fish tacos down and two to go (the Cheesecake Factory doesn't mess around with portion sizes), the phone rang and my adrenaline pumped when I saw that Blocked was calling. A bed was available; check in at 6PM. Perfect. I'll be there!
I had a little bit of time at home before we braved the downpours and the traffic for the third time today. Teddy and Annabel were so excited for their sleepover. In all seriousness, one of the biggest problems I anticipated if I didn't make it in here tonight would have been telling Teddy that his sleepover was canceled. I honestly considered sleeping at my parents' house for the night if that happened so as not to add Teddy's heart to the list of broken ones about the chemo being stalled again. But I did make it in here tonight and Teddy did get to ask Papa and Nana all of his random falling asleep questions, some of which could have well included lucrative requests and promises. Teddy has always known when to pounce.
Walking into the ICU tonight was hard. Because of the three or four rooms I walked by, every patient looked like they were dying. I held my breath. Years ago, I somehow pulled it together to see my grandparents when they were that sick and near death, but it took time to get used to the sight of them in that condition, and passing by a patient's room doesn't offer that adjustment time. Instead, it's just a quick tragic sight, like a snapshot burned in my memory, and it breaks my heart.
Once I was in my room, I made an internal vow not to leave it until I am discharged. I don't want to see that sort of illness again. Since then, it's been business as usual -- vital signs, medications, EKG, several doctor and nurse visits to discuss protocols and procedures, and the insertion of my IVs (lucky me -- now there's two -- one for the chemo meds and one for easy access if, Heaven forbid, anaphylaxis occurs again). And so I wait. Brian is fading on the recliner. But thanks to my steroids, I'm just revving up. Don't worry -- I'll take an Ativan in a bit so I can get some rest, and give you some (rest, not Ativan).
Tonight, maybe because of the rain, or because of the whole cancer-treatment-in-the-ICU-thing, I wasn't in a great mood. The stress had gotten to us, and Brian and I bickered. That's never fun. Even before I had cancer, when I got in a mad mood, I'd pull out my internal shit list -- you know, the list in my head of all of those things that had frustrated me over the last month or two that I appeared to let go at the time. I'd bring up all those things again, as if they happened yesterday. It's such a dumb thing to do, and even though I know that, I still do it.
Unfortunately, I can't blame this silly practice on cancer since it pre-dated it. But since my current shit list is pretty much just a big banner with the word cancer on it, I've had to find a new ridiculous practice for when I get in a bad mood. So now, when I'm grumpy, I get really mad at people who do things to themselves that could cause cancer since I spent my whole adult life doing things that I thought would prevent things like it. For Pete's sake (or "for peace sake" as Teddy says), I even breast fed my kids because I heard it reduces the risk of breast cancer, not for bonding purposes or even for special nutrients (sorry kiddos, I'm just being honest). Where am I going with all of this? Well, it's simple -- since I got cancer, I often find myself full of rage when I see people smoking a cigarette.
Now, you've probably gathered that I am pretty politically neutral in this space. Through an entire election that included candidates and issues that I care deeply about, I never made this space about my own political opinions. In a way, this place transcends all of that for me, but at the same time, it also falls right at the heart of it. Because to me, this space is so much about core values and personal, fundamental beliefs about what is most important. So even if I never mentioned any candidate's name (OK, maybe once I published a quote by my most favorite), I don't think I completely neglected the discourse. (And by the way, the irony is not lost on me that our President (aka, my aforementioned favorite candidate) used to be, or perhaps even still is, a smoker. If I ever had the chance to meet him, he'd get a piece of my mind on this, too. Or maybe I should send him a hard copy of this entry.)
So writing about my utter frustration with smokers may seem unlike me. It may seem like crazy-lady-on-steroids again (only last time I went on and on (and on) about Halloween). Maybe partly it is. But it's also something I've thought a lot about since I got cancer so it deserves some air time.
I'll never forget a few weeks ago when I went to the pharmacy to pick up some medications related to my chemo side effects, as well as some more milk. It was early on a Saturday morning and I stood in line behind a girl, probably five or so years younger than me. She bought two small boxes of Oreos, a Red Bull, a candy bar, and a few packs of cigarettes. I hate to feel anger in my heart, but as the cashier bagged her items, I did. Because I was going to go home and eat stupid Grape Nuts with stupid organic milk. I was here picking up my stupid medication for my F*&^-ing stupid cancer. I have never smoked a cigarette in my life (although I think once when I was drunk in college I may have tried to, but after one touch to my lips, I coughed and decided that was enough of that for the rest of my life). And here I was, having been up for hours, nauseous, mouth burning off on the inside, getting medicine and milk. I wanted that girl to know all that. Boy would it have been a scene if I had told her. Obviously, I didn't.
I get the same sort of rage when I walk by people smoking outside of a building. Sometimes I think I won't be able to resist the urge to go up to them and scream -- You see this bald head? I didn't do anything to deserve this. But here you are, doing something you KNOW could cause the very thing that I would give anything to rid myself of. Do you know how F*&$-ing unfair that seems to me right now? But again, obviously, I don't. I just hold my breath until I'm past all of the smoke.
Or maybe I do succumb to the urge to scream. Because here I am, feeling perfectly healthy, venting about smokers while surrounded by people in comas and by those patients' loved ones who are most likely sick with worry, fear, and exhaustion. Again, I'm sure it's partly the energy kick from the steroids. Maybe they should add to directions on the pill bottle -- Do not operate blogs while taking this medication.
Too late now though. I've already vented and I have to pee, so what's done is done. (By the way, bathrooms in the ICU rooms are so tiny that my knees hit the door when I sit down. The nurse explained that most ICU patients don't use the bathroom so it's rarely an issue that the rooms are smaller than our outdoor trash can.) Man, I'm a jerk. I should probably just be thankful I can get up to go to the bathroom.
So, apologies to all of my loyal readers who smoke. I hope you don't take it personally. Trust me, I know we could have a lively debate about the issue although I kind of hope that never happens. I know that I have no idea how powerful a nicotine addiction could be, but it must be bad because I remember my own Grandma telling me that several decades after she quit smoking she still craved cigarettes. I also know that people bear great burdens and perhaps a cigarette eases that burden, if only temporarily. I don't mean to interfere with someone's coping mechanisms. Truthfully, this is not my call for a quit smoking campaign. It's just me sitting here on a bed that keeps inflating and deflating, being honest. And for some reason, tonight I'm feeling especially entitled to that honesty. Tomorrow I'll be nicer. Or maybe not. This feisty attitude may be good to keep around for a day or two longer.