Jane, Get Me OFF This Crazy Thing!

I feel like I should rise from my hard, utilitarian, church basement resident folding chair and say to the circle of haggard, exhausted people around me, "Hi, I'm Kathy. I'm a cancer survivor. I've been off chemo for almost two weeks."

At which point my fellow baldies would reply, "Hi Kathy," in an unexcited, battle weary, morale flagging monotone.

I can't blame them for not being excited. It's hard for me to work up the enthusiasm one would think would come part and parcel with such an announcement. Which, I have to say, I find weird. I was sure that by the time I got to this stage, finally being done with the extended mass murder of millions of my cells, healthy and not so healthy, that I would be jumping up and down for joy, thrilled that the extended hell of chemotherapy was done. But I'm not. I'm too tired to party, it seems. I can't even work up the enthusiasm to get one of those little doohickeys that you blow into at New Year's Eve parties, where your breath expands and unrolls a paper funnel and it a emits a cheerful little sound. I just can't be bothered. I'm finally off the roller coaster, for which I'm grateful, don't get me wrong, but I'm too discombobulated to be truly thrilled the ride is finally over with.

But at least it's over with. Because, for a while there, the car of the roller coaster stopped five feet short of the platform, and I was unable to get off the stupid thing because of idiotic safety regulations.

If you're interested in the entire, windy, tale, take the jump. If not, feel free to skip. You have my blessing.

I believe I've mentioned that things started going downhill after treatment number three. I managed to get through number four in an ok fashion, but number five was a doozy. I spent the better portion of a week in bed, mostly drugged out of my skull. The nausea was worse and I had to take more and more drugs to keep it under control. The bone pain was, well, horrible. I don't really know how to describe the bone pain, which is a result of the chemo working on your bone marrow like a two-bit thug works on shopkeeper who's been late with the protection payola. Your bones not only ache, they emit pain from deep inside. It's weird, and it's hard to describe, but let me just throw this out there, and we'll see if you get it: I could actually feel the space between my fibia and tibia, in both calves, because it was the only place in my legs that didn't hurt. Fortunately, however, I'd told Dr. Academic in my meeting with him before #5 was administered that the Claritin and Advil concoction wasn't working for the bone pain any more, and he prescribed me percocet, the narcotic of choice. Percocet works well for me. Vicodin makes me sick; percocet, however, doesn't---it just makes me high (oh, and pain-free, too.). And high I was. For about four days. If I wasn't sleeping it off, I was on the sofa, watching the Discovery Channel with a glazed expression. The poor husband was at his wits end. He wasn't able to do anything to make me feel better, and it was driving him crazy. I honestly don't know who cancer treatment is harder for, the patient or their spouse. It's hard to go through this stuff, yes, but it has to be harder to watch your beloved suffer and not be able to do anything to remedy it. But as bad as all this was, it passed. The only thing that didn't pass, and which I'm still dealing with to this very day, are the neuropathies which showed up the day after #5 was administered.

"Neuropathies" is a fancy word for nerve damage in your hands and feet. Numbness, tingling, shooting pains, that sort of thing. Taxol, one of my chemotherapy drugs, comes with the risk of temporary nerve damage, and it was one of the few side effects Dr. Academic actually wanted to make me aware of, actively warned me about, and told me be vigilant about reporting if it showed up. As I understand it, the nerve damage shows up in your hands and feet because it travels to your appendages first, attacking the nerves in the outlying regions of your own personal solar system, before moving to more central areas, much like the Empire did in the Star Wars films. It's, apparently, easier to consolidate power this way, or to destroy Alderan with this fully OPERATIONAL Death Star, etc. Or whatever. Well, this is what happened. Since July 14th, 2007, the bottom of my feet have been numb---and I haven't felt anything there since. I also have the occasional joy of shooting pains in my hands and feet. I could handle the pain if it just shot down my fingers and toes occasionally and then went away. Unfortunately, it doesn't do this. Once it starts, it doesn't stop, and what really drives me up the wall is that the pain doesn't just radiate downward, through the fingertip, like a rational person would expect, it also radiates upward, through the nail bed. This is what kills me. I have never wanted to maim myself so much as I want to shove a piece of bamboo down the nail during these episodes. Instead of searching for a skilled North Vietnamese torturer, however, this is when I take a percocet. It relieves the pain, thank God, because it doesn't do that for a lot of people, but it also reboots my nerves, and sends them back to a calm stasis. Until the next round of shooting pains, that is.

I reported the nerve damage to Dr. Academic's nurse a week after they showed up, and much to my surprise, she actually consulted with him about it on that day, which was one of his surgery days. (Every single one of his patients knows Dr. Academic's schedule by heart, and on the rare occasion the dude is on, say, a well-earned vacation, it throws everything into a tizzy. Mondays, Wednesdays, and Thursdays he's in surgery, so you'll have to wait for an answer if you call in with a question and the nurse doesn't have a clue. You actually are thankful if your problems show up on Tuesdays and Fridays, when you know the A-Team is on it.) She told him about it, and he decided on the spot to switch me over to a different kind of chemo called gemzar for my sixth, and final, treatment. The taxol was causing too many problems, it seemed; it was time to switch over to something different.

I'd heard about gemzar from my chemo buddies. From what I could gather, it was "nicer" than the taxol, and is what a lot of women receive right from the start of their treatment. One out of three women, it seems, is allergic to the taxol, and Dr. Academic switches them immediately to gemzar, you know, after he rushes them over to the ER to treat the allergic reaction. I could tolerate the taxol, so there was no need until the neuropathies showed up to move me onto this "nicer" treatment. Let me simply say this: if I'd known how much better the gemzar was in comparison to the taxol, I would have, somehow, faked an allergic reaction to the taxol right from the start to force them to give me the gemzar. It's much better. So much better. It's "chemo lite." While you don't necessarily feel great, you're not completely out of it. And the best part? Very, very little bone pain! It's like a momentary twinge, instead of a days long ache-fest.

Of course, however, like anything involved with cancer treatment, there's a downside, and that's the dosing. With the taxol, I showed up every third Friday at Dr. Academic's office and was stuck there for five hours, hooked up to an IV. But that was it. I didn't have to come back in for three more weeks. I hadn't really thought much about the gemzar being different in this respect before I went in on August 3rd, for my last treatment. I was having too much of a hard time getting around how scared I was to allow for such thoughts to enter my head. Number five had sucked. Big time. The pattern had been established that every treatment was worse than the last. As such, I was terrified that number six was possibly going to kill me---which, surprisingly, was a first in this eight-month endeavor---or would throw me back into the hospital at the very least. At best, I was afraid the misery was going to be something that I could take, but would scar me somehow. None of these options was great. But I went in to receive it, nonetheless, buoyed up by the husband and Mr. H., who did everything in their power to keep my eye on the prize: that it would be over with after this one.

The way things work on treatment days is that you go into the office, get checked in, and you sit around and wait for them to come and get you for your various excursions around the office. First off, the lab ladies will retrieve you, so they can draw blood to see how you're doing. Then you go back to the waiting room, your arm bandaged from where they stuck you for the draw, to wait for a nurse to come and get you for your appointment with Dr. Academic. When an exam room opens up, they lead you to the scale, where you have to weigh-in, which resides right next to five office employees, who get to hear if you're up or down. Then you go back to a tiny exam room, where all the good magazines live, the nurse takes your vitals (pulse, blood pressure, temperature) and then quizzes you on all the drugs you're taking, invariably pronouncing something wrong because she can't read previous nurses' handwriting. This vital piece of business done, she slips your file into a holder on the outside of the door and leaves. Then you sit and you wait. And you wait. And you wait. You finish your coffee. You sneak out to go to the bathroom because the coffee demands that you do. You sneak back into your room and you wait some more. You finish your newspaper and start perusing the In-Style magazine that someone has conveniently left for you to read---and you're grateful for it, because it's the only thing that keeps you from slipping into a mid-morning coma. But, yet, you still have trouble keeping the sleepiness at bay, and so, while you're nonetheless awake, you're not as sharp as you might be under other circumstances. Of course, this is precisely when Dr. Academic shows up. I think he times it like this on purpose, to keep you from remembering everything you wanted to ask him, so he can try and get back on schedule.

When he finally showed up before my last treatment, he informed me that he'd gone to Spamalot the night before and then launched into an explanation of how the gemzar worked, using the maiming of the Black Knight for analogy purposes. Apparently, according to Dr. Academic who was still chuckling over the humor of Spamalot, the taxol attacked any remaining cancer cells by going after the Black Knight's arms; as such, the gemzar would go after his legs. (And I am exceedingly grateful the guy let up with his white board habits and didn't illustrate the Black Knight, with blood shooting out of the spot where his legs should be, for me. I can only think he would have gone crazy with the spurting blood.) This would, reportedly, lead to enough flesh wounds that any remaining cancer cells in my body (of which he said there were none, because my CA-125 numbers were "great") would be dead on arrival. He said he was actually kind of happy that I was going on gemzar, because of this flanking maneuver. After some chat about the neuropathies, how I'm now anemic and how I now have to receive Aranesp to bring my hemoglobin back into line, and what I could expect from the gemzar, he then instructed me to hop up on the table, where he checked my incision, per usual, did the routine with the stethoscope and the breathing, and before I knew it, I was back out in the lobby, waiting for a new nurse to come and get me for treatment. It wasn't until after I'd been pulled in into the treatment room, and was making another beeline for the bathroom before I got hooked up to the IV (it's much easier to go to the bathroom without the IV than it is to go with it.), that I ran into him in the hallway. He pulled me aside and said, "I forgot to tell you. With the gemzar, the treatment is split up into two parts. You'll have to come back down here next Friday to get the second half."

The look on my face must have said it all. He instantly rubbed my arm in a very caring and sympathetic way and said, "I'm sorry."

Joy on a stick, eh, my devoted Cake Eater Readers?

I hit the bathroom and wander back to the treatment room in a bit of a daze, but actually not too overwhelmed at the news. One of my chemo buddies, who had been on the gemzar, had mentioned something about the dosing schedule, but it hadn't clicked until then. My nurse, Rebecca, gets her wheeled-stool and her plastic cabinet full of IV goodies, and comes over and hands me the new release form and a list of all the possible side-effects that come with the gemzar. I read them over as she goes and gets the little plastic bags full of liquid chemo-y goodness, from the back room, where they mix the drugs. I sign the form, she sticks me, and away we go. I call the husband, who is planning on coming down later to bring lunch, and tell him about this new development, and that he should show up earlier, because treatment's not going to take as long as it would with the taxol. I am completely unprepared for his reaction. He blows up. He is furious. And I mean furious. He rants and raves and is more upset than I've heard him be in quite some time. It has finally gotten to him, it seems; all the pressure that started to build up back in February has finally exploded. By the end of the call, I am actually somewhat scared that he's going to pop Dr. Academic in the jaw when he shows up at the office, and that's saying something given the husband's usual laid-back stance. He never resorts to physical violence to solve a problem. He's so vehement on the phone that I actually wonder if he's been driven to it. Fortunately for Dr. Academic, the husband shows up for lunch still visibly upset, but over the worst of his anger. We eat, we hang out for a time, we leave the minute the drugs are finished running.

Fast forward through a week of feeling fatigued, mostly, and some low-level nausea, and I'm back down at the oncologist's office to receive the second half of the treatment. It's just the gemzar this time---there's no carboplatin to maximize the misery. I should be in and out of there. But, of course, I'm not. They tell me there's a goof in scheduling; that they have to get blood drawn to see where I'm at before they give me the treatment and no one had set me up for this. Ok, that's fine, I guess, it makes sense, and I wait to be called into the lab. I'll be done with all of this soon. I can have the patience to get through it now. They call me, we do the draw, I go back out to wait. After about a half-hour of twiddling my thumbs (like I said, all the good magazines reside in the exam rooms), a chemo nurse calls me in and once the door to the lobby swings shut, she turns on me and announces that they can't give me chemo that day because my neutrophil numbers are too low. I'm at 0.8. I need to be at 1.2, bare minimum, before they can give me the treatment. Dr. Academic is not in the office this day to overrule the decision, so the nurses are erring on the side of caution.

This is where the roller coaster stops five feet short of the platform.

I stand there, flabbergasted, and wonder aloud at what I'm supposed to do now. Of all the possible outcomes for this day, this is the one I really didn't expect. The nurse tells me I have to reschedule, and to go back to the treatment room to talk with Michelle, who handles such things. I do this, and get everything reworked for the following Tuesday, and I try not to start weeping in front of the other patients. They don't need it. There's a lady directly in front of me who's receiving chemo into her port and is wincing horribly every time her nurse disinfects the port, while she tells the nurse about being diagnosed with her leukemia, which they found during a simple wellness checkup. I can't start with the disappointed weeping in front of her. That just wouldn't do. Somehow I manage to keep it together until I get home. Then I start bawling. I cry all the way through the call to the husband. I cry all the way through the call to my mom, who sounds like she trying to keep from crying. I get it under control, but decide to stage a full-on pity party for myself---that is until Christi calls and tells me to, in essence, to pull my head out of my ass. Only nicer. She gets me to rework my thinking on this one. Because, honestly, what am I crying about? That I couldn't receive chemo? Nasty ass chemotherapy? You know, the stuff that makes you sick? Who in their right mind would cry over that? It's a really stupid thing to cry over, if you think about it. What's more is that I feel mildly stupid that I didn't expect this outcome, because they tell you, numerous times, that your immune system is at its lowest seven to ten days out from chemo; that this is when you're most likely to catch something from someone, and you should make like a hermit and avoid anyone who's even mildly sick. It makes sense, then, that part of what makes up my white blood cell count should be low. Duh.

After three days of shoving every vegetable and fruit known to the produce section at our local grocery store down my gullet, in an attempt to get that number back up, I brace myself and go back down to the office, to try again. This time, however, we have success. Even though my platelet count is low, Niels, the nice Danish nurse informs me, Dr. Academic has cleared me to receive the treatment. Happy, I sit there and endure it. I'm about halfway done when an older, bewigged lady comes and sits next to me. She has a friend with her, and her friend butts into a conversation I'm having with two ladies who are further down the line, one is receiving treatment, the other is there to keep her company. (That particular lady is in remission, but is receiving EIGHTEEN chemo treatments for a study, if you can believe it. I tell her she should be sainted.) While her friend is on her phone, talking with her pastor, to tell him that her numbers have gone down "miraculously," I find myself stuck chatting with her friend because the eighteen-treatment-lady has been unhooked and has left the building, but not before she waved goodbye, a sympathy written all over her face. You see, she was sympathetic to me being stuck there for a time, because it turned out that the bewigged lady and her friend were evangelical Christians, intent on turning every bit of conversation toward how good the Lord was. They couldn't seem to get past the possibility that maybe, just maybe, other people didn't want to hear about it. Or would even think differently.

Now, I don't mind Christians. I can even deal with the Evangelical sort, who are a little too excited about the possibilities of Christianity for my tastes. I'm Catholic: we're pretty much fatalists at heart; if it's our time, it's our time, we'd simply better have our souls ready to go when it happens. This woman, however, was getting on my nerves in a big and bad way. Somehow, in thie middle of a treatment room, where people are receiving CHEMOTHERAPY, she somehow managed to look past the fact that her friend had cancer in the first place, but placed all the credit for her miraculous recovery at the feet of Jesus Christ, and how much faith her friend had in Him, how dedicated she was to her Bible Study, how much she'd helped other cancer patients in their church, etc, which I have to say may have annoyed the nurses and doctors buzzing around the room. A bit ironic, no? Particularly when her friend was being hooked up to the stuff that was killing her cancer at that exact moment. But I was stuck talking to her friend while she yapped away to her pastor. There was no escape, so I had to converse with her. She was not going to shut up. I feigned sleep, more than once, and yet she kept talking. So, of course, I was forced to keep listening because she wouldn't get the fucking hint. Just to give you an idea of how annoying she was, in the course of the conversation she told me that her son-in-law, who was a doctor, had told her to prepare for the fact that her friend might not survive; that she had colon cancer, which had spread to her liver and that, generally speaking, was not great. In the very next breath, she said she was very sorry that she wasn't going to see him in heaven, as he would be spending eternity in hell because he hadn't accepted Jesus Christ as his Lord and Savior. I kind of got the feeling she wasn't too unhappy at that prospect, particularly considering the prognosis he'd given her friend.

Usually, I'm pretty antsy when I can see the fluid in my last bag is dwindling. That day was no different in that respect, but I can honestly say I've never actually tracked the progress of the fluid from the bag and through the IV tubing before. I did that day. I was desperate, and it wasn't just because it was my last treatment. I wanted to get the hell out of there and away from that wacky Christian. And when the last drop had dripped, and had meandered through the tubing, I desperately flagged down my nurse and, thankfully, he unhooked me.

I was out of there and I was done. I finally had managed to get off the roller coaster. I was woozy and I was discombobulated, but I was off, and I was grateful for it.

The last thing I expected, however, was to get shoved on a treadmill, ala George Jetson, yesterday.

Yeah, I know, could this saga get any longer? You'd think I'd have the good sense to shut up and give you poor people, my devoted Cake Eater readers, a break right about now. But, no, I have no sympathy that way. You could have quit reading looong ago, if you'd wanted to. (And, quite frankly, I'm surprised that you didn't.) In for a penny, in for a pound, eh, my devoted Cake Eater readers?

Anyway, yesterday I had to go in for another Aranesp shot. Aranesp, if you didn't know, is long acting EPO---which is the stuff all the cyclists use to cheat with during the Tour de France. I'm blood doping, in other words, but for me it's legal, because I'm not competing in a cycling event, and because it's something I actually need for my anemia. I, again, assume that I'll be in and out of the oncologist's office. That even though I have to have labs done, it should be fairly routine, like when I received the neulasta shot. Again, I am wrong. When the labs return, and the nurse pulls me in for the shot, she informs me that I have to stick around for a bit, because she has to check with Dr. Academic to see if I have to go over to the hospital for a transfusion. Yes, that's right. A transfusion. Of blood. Because my hemoglobin is at eight, where it hasn't been since I was in the hospital, in February, after I'd been transfused twice during my surgery. The normal range is 11.5-16. I'm low. Way low. Which is not cool, but I take it on the chin, receive my shot and go back out to the lobby, to wait, again. While the anxiety builds.

A half hour later, Dr. Academic's main nurse comes out to chat with me. She hands me my copy of the labs, tells me that Dr. Academic wants me to ride it out, rather than receiving the transfusion, because I'm young and I should bounce back from it. That the anemia is bad simply because of the chemo and that it should rise again, in time for my next Aranesp shot in three weeks time. If, however, I should feel short of breath or really tired in the meantime, I should call them and they'll set up the transfusion. Joy. I'd already told the other nurse that I'd been really tired all week and that I'd been feeling short of breath after any exertion and I'm too exhausted with all of this shit to sit there and repeat it all. I assume the information has gotten passed along, because I don't want to have to go through it all again, and particularly not in the waiting room, in front of other patients. I nod, agree to all of the above and I get the hell out of there, feeling on one hand like I've dodged a bullet, and on the other feeling like maybe, just maybe, I haven't.

I go home. Make my calls, spread the word, eat lunch and go to bed. Later that afternoon, I go to the grocery store and buy something I've never bought before: calf's liver, which is a dish from my childhood that repulses me to this very day. But it's loaded with iron. So, my devoted Cake Eater Readers, I cooked it up with some fried onions and had it for dinner last night. The husband even ate some with me, bless his heart. I had spinach for lunch today. I will do anything, and everything, I possibly can right now to get Jane to get me off this crazy thing.

And if anyone thinks I'm going anywhere near an amusement park for the rest of my life, they've totally got another thing coming.

Posted by Kathy at August 25, 2007 02:11 PM | TrackBack