Surgery: Part II

When I woke up, I was in recovery, and I was very disappointed that my breast surgeon, Dr. Dupont, had had to leave because I wanted to tell her that I had changed my mind and didn’t want to go through with the surgery after all. I guess I thought it would be funny.

I was extremely nauseous despite the hard core anti-nausea medication they had given me before surgery. You may recall my discussion on the tri-pack of Emend pills that I would take on the day of and two days following my Adrimycin and Cytoxin treatments, the pills that cost roughly $120 each. Well that’s what they gave me, except intravenously. Anyway, apparently it didn’t do the trick, because I was incredibly nauseous when I woke up. I remember telling the attending nurses this and explaining to them that, for whatever reason, Phenergen seems to work the best for me. Of course I didn’t know what I was talking about – I was, after all, just a patient, and right out of surgery to boot – so they gave me Zofran instead, which I know makes my vision blur, my head feel dizzy and swimmy and my body feel very tired. I guess it must have helped when they gave it to me with all of my chemo treatments, but I also remember it making me feel pretty bad.

So the nurses injected some stuff into my IV and asked if I felt better. I said yes, because I thought I did, but then changed my mind and told them I still didn’t feel well. I asked if they had given me Phenergen, they said no, and I asked if they would. They injected some stuff into my IV and asked me a couple minutes later if I felt better. I did, and not long after that a guy came to take me to my room. The whole time I had been talking and apologizing to the nurses. I don’t remember what I was talking to them about, but I remember that I kept apologizing for a) not feeling well and not being able to better physically accommodate whatever they were trying to do and b) for talking so much.

When the guy came to take me to my room, I still wouldn’t shut up or quit apologizing. I asked him what his name was, told him my name and that it was nice to meet him, and then said something to the effect of, “I hurt pretty bad and don’t feel very good, otherwise I would turn around to look at you when I talked to you, but it hurts a lot and I can’t do that right now. I’m sorry.” He assured me that it was alright and told me that I shouldn’t try to move.

There were a couple of people in my room when we got there, I think. My mom, maybe, and possibly someone else. I can’t really remember. What I do remember, very clearly, is the other guy coming into my room to help the first guy move me to my bed. I couldn’t really do any moving on my own – I think I was still paralyzed from the injections they did in my back – and I found it upsetting to have to be moved and was embarrassed when they had to kind of roll me partially on my side to get something under me or out from under me or something and I knew that my hospital gown wasn’t covering my ass. I tried to kind of reach back and cover myself, but it hurt to move and they told me to stay still. The whole thing was pretty quick, but I still felt humiliated and helpless. They each took hold of the sides of the pad/blanket thing that was under me and lifted me from the gurney to my hospital bed. They set me down very gently, although I was in a somewhat awkward position – a little too low and too far to one side. There was absolutely no way that I was going to be able to move myself into a more comfortable position; there was this agonizing burning in my chest, a pain that made me feel afraid to move the upper part of my body, and, like I said, I still felt somewhat paralyzed from the middle of my back down. The guys had already left, so the nurses moved me up and over using the pad under me and I was more comfortable.

For a while I drifted in and out of consciousness, fighting very hard to stay awake and talk to my family and friends that were in and out of the room. At some point I mentioned how badly I had to pee and the nurse who happened to be in the room helped me sit up. Pulling on my arms at all was completely out of the question and moving my shoulders would have caused considerable pain, so all assistance had to be directed to the middle of my back. The nurse positioned her hand on my back and gently hoisted me forward, and I shakily swung my legs over the side of the bed so that I was sitting facing the bathroom. Nausea immediately swept over me. I sat there on the edge of the bed considering my situation, trying to decide how far I’d be able to make it across the room before I vomited. My head swam and I felt a cold sweat coming over me; I felt very unsteady sitting there, my body moving in a slight circular motion. My arms hung awkwardly at my sides, lightly resting on the edge of the bed and pulling uncomfortably on my pecks regardless of how I placed them. A hot wave washed through me, settling most intensely in my chest. The area around my mouth felt cold and numb and cold pricks ran down my jaw line. I could feel the sweat forming on my back, chest and forehead and the breath being shallowly drawn in through my nose and mouth became noticeably cooler.

The longer I sat there the worse I felt, and at one point when I looked up at Bryan, who was sitting in a chair facing me about ten feet away, I knew that my discomfort and feelings of illness were written all over my body. He sat there watching me, his eyes over bright and his hands clamped together, pressed against his mouth. I tried to imagine what he was thinking, how helpless he must have felt, and I offered him a weak smile. He did not smile back – he did not move at all.

I knew that I could not possibly get up and make it to the bathroom without puking, and I knew, given the level of pain I was experiencing already, that retching would be unbearable. So I looked back at Bryan and decided to end both of our immediate suffering and lay back down. The relief was immense.

Not too long after that someone, my sister, maybe, mentioned that they were hungry. I became excited by this and suggested that they should all go eat while I took a nap and we’d visit when they came back. They thought it was a good idea and I fell asleep almost immediately after they left.

A couple hours later I woke up again and felt much better. Bryan and his mom were in the room and I told them that my bladder was going to explode. I hit the nurse summoning button for the first time and two of them came in. They helped me sit up and made sure I didn’t fall over when I stood, holding their hands tentatively near me but not touching me. One of them walked next to me while the other pushed along the computer station I was attached to. The machinery I was hooked to by IV’s, wires, cuffs and cords was large and made an annoying beeping sound every couple of seconds. It monitored my vital signs, administered huge bags of saline, and stayed plugged in when it was next to my bed, although could be unplugged for short periods of time for walking or peeing purposes. Naturally, all of these attachments coming down my sleeves and through the back of my gown made it very difficult to maintain decency, and the best I could do was to hold the right side of my gown over my ass while the left side stayed tangled up in cords.

I successfully made it to the bathroom without falling over, puking, or even becoming nauseous. I was pleased. Much to my dismay, however, the nurses did not close the bathroom door behind me, apparently worried that I would fall in the toilet and drown without their hearing the splash. So the nurses and Bryan sat there listening to Joey Falls cascade at full force for no less than 40 seconds and trail on and off for another stretch equally as long. I have never peed so much in my entire life.

I carefully got up and was confused to find out that there was a bowl attached to the toilet that caught all of the pee and toilet paper. I apologized to the nurses only to discover that they were writing down how much urine I had expelled. Slightly disgusted, I made my way over to the sink and began washing my hands one at a time while I tried to hold my gown closed. I heard a man’s voice in the room, and I thought it must be my plastic surgeon, so I tried to hurry. The nurses partly closed the door when they finished logging my fluid excretion rate so that no one in the other room could see me at the sink. Under this pretense of privacy, I turned my back as close to the wall as I could and let go of my gown to hurry up and get my hands clean, then grabbed some paper towels to dry them. Suddenly the doctor came bursting through the door, swept up to me and snatched my gown down to look at my bandaged wounds. As he tore the snaps apart and exposed my entire chest I looked up at the bathroom door and was horrified to discover that The Interns were all there, watching. I tried very hard to pull my gown around, but it was my left side that was facing the door, and the wires and tubes would not allow it, so there I stood with only my arms and stomach covered, the door and sink mirror revealing all else to the eyes crowding the bathroom.

“Looks good,” he said casually, and hurriedly snapped my buttons up and whipped out of the room, saying “I’ll be back by tomorrow” as he left.

Stupefied, embarrassed, I finished drying my hands with the paper towel I was still holding and missed the trash can when I tried to throw it away. Not trusting myself to bend down, I left it on the floor and pushed my computer station out into my room, one hand behind me holding my gown. The nurses intercepted me and helped me back to bed. I heard voices outside my door as I carefully situated myself in bed; the distinct voice of Becky B. and the muffled voice of the person she was talking to – I guessed Bryan’s mom, who had left the room so that I could get out of bed and show my ass in relative privacy.

The nurses left and in came Bryan’s mom and Becky B. with a card and a very soft stuffed dog in hand; in that moment, I became happy again. The four of us chatted for a while, then Bryan went to smoke and his mom said good night and it was just Becky and me. I seized the moment and asked Becky to close the door and get my pajama pants that I had been wearing before surgery (I learned last time that jeans are not the optimum pant materials to try to get into after surgery and decided that I would be much better off with PJ’s). She got them out of the plastic bag on the window sill, brought them over, and then, because she’s a wonderful friend, helped me put them on one leg at a time. I worked my way back into the bed and felt relieved that I would not again be caught with my pants off.

Day turned into night, everyone left, and I entertained myself with the Nintendo DS and television. The nurse came in every couple of hours to take my blood pressure and ask if I needed anything. I drank copious amounts of grape juice. I stayed awake most of the night. The generic Percocet made my skin dry and extremely itchy and it wore off every three hours, which was an hour sooner than I was allowed to have another dose, so I would hit my nurse summoning button and answer “I hurt” when the remote control would ask me what was the matter. This procedure would produce a nurse with a shot of morphine and then I would feel better and sleep for about 20 minutes. One time, in the middle of the night, I tried to wait out the entire four hours before I asked for more pain medication. I discovered that that was a terrible game that even the morphine couldn’t quite fix and I didn’t do it again. “Don’t let the pain get away from you,” I repeated in my mind at the first sign of the monster’s wakefulness, and then promptly told the remote control I hurt.

When 5am rolled around I thought about the previous 5am that I was there for and how fucked up I was now. I turned the Nintendo DS back on and half watched movies I’d never heard of.

Long Term Effects

I’m at the Blood and Cancer Disease Center getting my tri-weekly Herceptin treatment. Three recliners down from me is a woman with a dark pink handkerchief tied on her balding head. I guess that she is in her 40’s. She looks drained, determined and focused — ready and only slightly anxious. She’s reading a Readers Digest, using her blood work report as a bookmark.

These are all things that I noticed only after I was able to draw my attention away from the contents of the bag hanging from her bag pole: three large syringes filled with bright red liquid.

Adriamycin — the Red Devil.

It is a strange revulsion I have to that stuff; a kind of subconscious revulsion that makes me feel antsy and nervous, like it might somehow get out of its bag and into my veins if I don’t keep a close eye on it. But while I can hardly tear my eyes away from from the syringes hanging there, I also don’t want to look at them, as if, perhaps, the vile stuff they contain might notice me staring at it.

As I consider the immediate effects of Adriamycin on the body and the long term effects it has had on my heart, and as I begin to recall my worst days with the stuff, I remember with total clarity why I decided to have this surgery coming up on Tuesday in the first place. My uncertainty subsides, although only slightly, and I begin to feel more like I am doing the right thing. I am a little less apprehensive and a little more confident.

The nurse takes down the bag with the syringes and sits down next to the woman in the dark pink handkerchief. The nurse begins her slow push, a saline drip diluting the life sucking fluid to a slightly less corrosive consistency.

I cringe and hope that I what I am doing is enough.

Tell Me if it Hurts

These past two weeks have been vividly reminiscent of the two weeks following my initial breast cancer diagnosis, except that this time I already know the motions, the procedures, the vocabulary and the doctors. It is more in the form of negotiation where I am asked what’s good for me instead of being told, talked to instead of at, and I already have a relationship with the nurses, doctors and even some of the imagining technicians. I know how to get there, where to go, what they call it (for example, the Medical Office Building is actually the MOB), the best place to park, what I need to bring, and how long I’m going to have to wait.

This time, just like last time, all of the driving, calling, meeting, discussing, scanning, picking up and waiting, waiting, waiting is taking up all my time; but this time, it is also taking up all my energy. This time the mystery, strangeness and gargantuan amount of new information has been replaced by repetition, familiarity and crystal clear understanding. The adrenalin stopped pumping a long time ago; now I’m just kind of stressed and my left eye won’t stop twitching.

Today, however, provided something new, different, interesting and quite strange. Today I got a spur of the moment operation where I not only got to stay awake and see the rather large hole cut into my breast (although I did not get to watch the procedure), but also got to handle the tissue removed and squeeze the lump literally between my fingers, outside of my breast!

When I went in to Dr. Duponts office in Lakeland, I thought Dr. Dupont was going to examine me, look at the ultrasound and mammogram films, talk to me about options for the next step and then schedule me for something either this week or next week. And she did examine me, look at the films and present options, but she also stated her discomfort with the lump and told me that she had pulled a tech from the medical procedure building across the street that could preform an ultrasound guided needle core biopsy on me today if I wanted. She told me that the lump felt dissimilar to the rest of the scar tissue in the area and that it shared characteristics of the original tumor. She said that for those reasons she believed that the biopsy would show that it was a cancerous tumor and that in that case she could recommend an excellent plastic surgeon named Paul that could preform a mastectomy with reconstruction. He is, she said, literally an artist, a sculptor, “He’s got the eye; he does beautiful work. The best. The best.”

Unfortunately, however the surgery would not be preformed for another three weeks. She said that she likes to wait for at least a month after chemotherapy is over to preform such a major surgery. This made me feel antsy. I hated the idea of leaving that thing in there for another three weeks if it proved to be more cancer. Dr. Dupont, the wonderfully perceptive woman that she is, could clearly see that I did not like the idea of waiting, and since she is as warm, caring and empathetic as she is perceptive, she understood completely.

I went into the procedure room so that Karen, the technician that Dr. Dupont brought over from across the street, could begin by trying to get a clear picture via ultrasound. Meanwhile, Dr. Dupont went out into the waiting room to let my mom know that we were going to do an ultrasound guided needle core biopsy. While she was telling my mom everything that she had told me, she told my mom that I clearly did not like the idea of having to wait a couple of weeks for a mastectomy if the biopsy came back positive for cancer, which, she told my mom, she felt it would. My mom said something about how I wished there was some way I could just “pop it out,” and Dr. Dupont, my mom told me later, kind of lit up and said, “Oh, that’s what I’ll do! I’ll be back in a few minutes.” She then came into the procedure room while Karen was ultrasounding my breast and asked if I just wanted it taken out right then and there. “Uh… Yes,” I said, uncertain of exactly what that would entail, but knowing that I didn’t want the thing in there. “Ok,” replied Dr. Dupont, “We’ll get it out of there then. Donna,” she said to her head nurse, “please prepare a cart,” then she turned to me and said, “I’m going to go let your mom know what we’ve decided to do.”

Ten minutes later Dr. Dupont came back in the room decked out in her surgery garb, just like she had been for my lumpectomy at Moffit, and explained that she was going to use local anesthesia and avoid getting blood on my pants, which she was glad weren’t white.

The anesthesia injections were rather uncomfortable… somewhat painful, actually… and she had to apply a lot of them because I have dense breast tissue, but it was probably much less painful to get the injections than it would have been to have the lump cut out without any anesthesia, so I didn’t mind. When she started sticking the needle into the many necessary areas she said, “Now this is going to hurt a bit, and that’s allowed, but if at any point after this you feel anything at all, you let me know because that’s not allowed and we’ll put an abrupt stop to that. We don’t want that. Discomfort during the procedure is strictly prohibited.”

The procedure itself was very strange. When she first started cutting into me I could kind of feel it, so she gave me more injections. Then a while later, while she was snip, snip, snipping away at the area around the lump I could feel a cutting pressure again (she went pretty deep) and I got even MORE injections. She ended up injecting four bottles of local anesthetic between the beginning and end of the procedure, at which point she injected a bottle of stronger stuff to tide me over until I got home. She also rinsed the cavity with an entire bottle of anesthetic at the end before she sewed me up. Mind you, these were NOT small bottles.

The first really weird thing was when she would make a cut with the scalpel or a snip with the scissors and I could feel the warm blood flowing down my side, and then when she would pull at something and I could feel blood oozing out, overflowing and spilling into the sterile area around me. It felt like a lot, although she had said before she started that she didn’t think there would be any crisis of blood loss and she never seemed particularly upset about the amount of blood, so I guess it wasn’t too much.

It was very strange to feel her pulling the whole time; first cutting through my skin and pulling it to the sides; then cutting through my tissues and pulling more and more to each side with each little “snip” of her little scissors; then, when she finally cut out the entire chunk that she wanted, I could feel the hole being pushed open with the little tongs to allow for a better view of the inside. I could feel her fingers inside the cavity, searching for any other abnormalities. I could feel it when she was stuffing the gauze in there to sop up the blood and then when she pulled out the drenched wads when she was ready to continue working. I could feel when she was pressing the cauterizer into me, into my tissues, trying to stop the bleeding while literally singeing me to well done on the inside… it is a very strange thing indeed to smell yourself cooking.

But it only hurt in the very beginning, before all of the cutting, pulling, burning and stitching, when she stuck the needle in me. And now. It hurts now. I’ve taken pain pills but it still hurts, probably partially because of the existent nerve damage; things tend to hurt my right side/breast/arm more than on the left side because the nerves are all still funky from surgery back in October. Also, she was cutting, pulling, burning, internally probing and stitching my boob, so that probably has something to do with it.

It was also quite strange to handle my own breast tissue. After she finished cutting and before she stated cauterizing she showed me the chunk she took out, which was surprisingly large, marked it for the lab and then, after Donna put a glove on my left hand, handed it to me. It was very cold, which surprised me, and mostly devoid of blood. After a little bit of massaging it between my fingers I could clearly feel where the lump was, which was a very, very small part of the chunk; at least we know she got good margins.

While she was probing around in my breast, after we had put the chunk of tissue into a cup with some type of liquid in it to be sent off to the lab, she said to Karen and Donna, “Huh, it looks like there’s a little blue dome cyst in there. Do you see that? I think it’s a blue dome cyst.” I suddenly envisioned the inside of my breast as a kind of aquatic cave full of beautiful, fascinating sea creatures. “I have a cyst?” I asked. “Yup. That’s what it looks like” she said, and I pictured some kind of bright, flowing sea anemone dwelling in the newly created cavity.

I couldn’t help it, and before she was finished I asked if I could see. She said yes and Donna got a mirror. Dr. Dupont had been cauterizing for a few minutes at this point and, while I was looking in the mirror, she said, “As you can see, that’s the pool of blood I’m trying to get under control. This over here,” she circled with her finger, “is normal fibroid breast tissue, and this,” she pointed, “is the cyst. You probably can’t really appreciate it right now, but it’s there.” “Yeah,” I answered, “at this point it just kind of looks like part of the landscape.” It was, after all, the first time I’d ever seen the inside of a breast. It wasn’t exactly an aquatic wonderland, but it did have some of the qualities of a cave; there were the nooks and crannies, the rocks and ledges and, of course, the pool of water… well, blood, if you want to be technical about it, but it could have just been the reflection of the cave’s red rock walls making the water look like blood.

During the entire procedure Karen, Donna and Dr. Dupont all kept me and one another engaged in conversation. I wondered a few times if that’s what it is like during surgery when the patient is under, if they talk about their pets and remodeling their kitchens and what not. Karen asked me at one point if I was still doing ok. I said yes, and she told me that she has found, as a person who had undergone a lot of serious dental work without any kind of anesthesia due to severe allergic reactions, that with pain it really does come down to mind over matter and that if you can distract yourself from what is really going on it won’t bother you as much. To be honest, though, I liked knowing what was going on and probably wouldn’t have minded watching.

Dr. Dupont felt that the area of the lump looked very much like scar tissue, and she said that she was hopeful that that’s what it would turn out to be. She told me that while the cosmetic result is going to be a little less pleasing than it was before, it is better to have the lump out of there, even if it is just scar tissue. I agreed and told her that, at this point, I prefer a type 2 error any day.

The chunk will be sent off to the lab Thursday (tomorrow) and we should have the results by Monday or Tuesday. I feel that Dr. Dupont is extremely knowledgeable and very perceptive, so I share in her hopefulness, but I am also not giving myself over to hope entirely because I don’t want to risk feeling cheated and extremely disappointed.

In any case, here’s to hoping.

Influential Insurance: The Neutropenic Patient

(Note: before continuing you may want to read this post, which I wrote in a notebook back in December but only recently typed it up and posted it here. It explains “Neupogen,” “neutropena,” “neutropenic fever,” “over productive stage” and “firestorm.”)

Taxol, unlike Adriamycin and Cytoxin (AC), has caused my red blood count to be diminished and has left my white blood count at the low end of the “normal” bracket, which is 1.4-6.5, but in the bracket nonetheless… that is, until recently.

Before I started chemotherapy, my normal level was 3.6. After I started on the AC treatments it was rarely above 1.3 and had a recorded record low of 0.6. Of course, in one of my over productive stages I had a high of, if I remember correctly, 63.
For the past three weeks my white blood count has been slowly going down, and every week the nurses have commented on the possibility of giving me a Neupogen shot to prevent neutropenia. This week my white blood count was low, outside of the bracket, making me more susceptible to, well, everything.

After they “took me down” (gave me a Heprin flush, removed my tap and taped gauze to my port) I asked if I should be getting a shot because of my blood count, because while I don’t particularly care for the way the shot burns and the discomfort and internal firestorms it causes, I would really rather not get neutropenic fever and everything that entails.

HOWEVER, as it turns out, insurance policies have changed! The nurse went and asked my doctor if they should give me a shot who said, to the nurse’s surprise, that no, they were just going to hope that my system corrects itself because the insurance companies are now refusing to pay for preventative Neupogen shots and require the following criteria for a patient to get a shot: 1) The patient must have neutropenic fever and 2) the white blood gradient must be below 1.0!!!! (remember, the safe zone/normal bracket is 1.4-6.5)

How can this be a thing? Why do the insurance companies have so much power over health care? I understand the need to control the excessive administration of drugs to patients for financial purposes, but, seriously, crack down on something that is administered excessively, like antibiotics. Antibiotics have been administered to me like candy on several occasions. As a matter of fact, one of my past doctors didn’t even seem to be listening to me when I was telling her my symptoms, and, in retrospect, she should have been worried about ovarian cancer or something and have prescribed an ultrasound like the doctor I dumped her for did, NOT antibiotics.

But why prevent doctors from administering preventative medicine to cancer patients? That doesn’t even make any sense! And the doctors only have the shots administered a) to patients that need them and b) until the patient’s immune system starts functioning on its own again.
My count isn’t that bad right now (1.3), but if it were a tenth of a point or two lower, I would be concerned and really pissed off… not that I’m not angry right now, but this is more general anger whereas the other would be more selfish anger.

Basically what I’m trying to say is that insurance companies are evil and have absolutely no concern for the patients. Not that insurance company employees are all selfish, soulless, creeps, but the top dogs and policy makers that make all the money certainly appear to be.

At some point I may venture to take on the big scary monster, but I am going to need to stock up on armor first.

Influential Insurance: Aloxi vs. Zofran

The chemotherapy regiment I have been on since January 4th is Taxol (chemo) with Herceptin (not chemo, although wildly expensive… about $2000/dose every week, which will triple when I start going every three weeks and getting three times as much). With this regiment I get the following premeds in the following order: Zofran (for nausea), Dexamethasone (a steroid), Zantac (for my stomach) and Benadryl (to prevent an allergic reaction to Taxol). They take about two hours to be administered and have varying side effects.

I have been on Dex since my first Adriamycin and Cytoxin (AC) treatment, where I received the premeds Aloxi (like Zofran, but better) and Dex as well as an Emend pill (hard core nausea preventer at $354/3 pack of pills) which I ingested as soon as they got my blood counts and found out whether my white blood count was high enough to get chemo, and then on the mornings of the second and third day. Dex has a cumulative kind of side effect, it seems, because I have noticed that my anger levels have risen since I’ve been on Taxol. Or perhaps it’s the Taxol. Or perhaps it’s the Dex, but I didn’t notice when I was on the AC treatment because the Adriamycin more or less wiped out all familiar and healthy feelings and replaced them with weak, nauseated aliens.
Anyway, in case you weren’t aware, steroids cause noticeable differences in mood.

The Benadryl makes me sleepy, especially since it is administered in high doses and directly into the blood stream.

I don’t think the Zantac causes any side effects, but that’s only because the nurses haven’t blamed it for causing any of the many that I have.

The Zofran, on the other hand, causes LOTS of side effects, even though they run it very slowly in an attempt to minimize these effects. Despite their attempts, however, Zofran is powerful and still kicks my butt, leaving me with the following annoyances: dizziness, blurred vision, inability to focus, inability to walk in a straight line, jumpy vision, loss of balance, loss of appetite, and, on the following day, the feeling that somehow a succession of queen size mattresses were dropped on me from a distance of at least 15 feet, the force of which caused my body to slowly slice through the concrete to the underlying surface like a spoon through a slightly under ripe tomato.

Now, as I mentioned before, Zofran and Aloxi have the same function, but Aloxi is much better for me. I can feel when my system is saturated with Aloxi, but it does not cause the symptoms that Zofran does, which last beyond the day of treatment. I know that this is not at all in my imagination because last week one of the nurses came to me and said, “I’m going to run your Benadryl a little faster because you’re already going to be getting out of here pretty late tonight. Let me know if it bothers you,” to which I replied, “Ok. I think I should be fine, though, because the Zofran didn’t really bother me much this time. I only got a little bit woozy at the very end, and it went away pretty fast.” About twenty minutes later the nurse came back and said, “The reason the Zofran didn’t bother you is because we accidentally gave you Aloxi, which is better for you, but your insurance doesn’t want to cover it.”

At which point I said, “WHAT? My insurance dictates how you guys are allowed to fix my cancer?” And she said yes, that the insurance companies very much dictate what the medical professionals are allowed to do with their patients and what their patients are allowed to have TO CURE THEIR LIFE THREATENING DISEASES. Now, I know that Aloxi isn’t going to cure my cancer, it is just going to help make my treatment more tolerable to my system, but instead I have to have Zofran, which is supposed to do the same thing but has all of these other side effects that very much effect my quality of life. I don’t mean to sound like I’m whining, but my head is seriously messed up right now and while I am aware that it is mostly the chemotherapy, I am certain that the Zofran is a contributor, and it is extremely irritating to me that the insurance company gets to tell my medical provider what she’s allowed to give me.

Don’t Forget to Bring a Towel

There is one cool thing about chemotherapy: you get to witness your body being beat down by a foreign substance and then build itself back up again stronger and more durable than before.

However, there is this other, very uncool thing that people savvy to oncology talk call “chemo brain.” Not knowing anyone who has gone through chemotherapy, I was not fully aware of the condition and was not at all prepared for it when I began experiencing it first hand.

These two things occur simultaneously, the effects of each increasing with every treatment so that as the body becomes stronger, so does the “chemo brain.”

As I have mentioned before, and as I am sure you already knew, chemotherapy attacks all cells equally — it does not target cancer cells specifically. The effects of this are especially evident in the nausea and vomiting effect of chemo where the cells of the stomach lining are being maimed. But chemotherapy also attacks that essential organ wrapped up and stored on your shoulders.

I am convinced that I am going to have permanent brain damage.

Here’s a brief summary of the first two months of treatments I just completed:

The first treatment left my body in a poisoned haze of rebellion and discontentment; “why would you do that to me?” it seemed to scream, and tried to teach me a lesson by refusing to walk in straight lines, digest food properly or allow me to complete normal daily activities like washing dishes. I was weak and my body was dizzy all the way up to my next treatment. I could hardly even hold my niece, which made me feel terrible.

The second treatment irritated my stomach more and chased my hair away, and the poison seemed to be storing itself in my tissues for a more malicious attack down the road, but my body seemed to be thinking something to the effect of, “Alright, fine, you wanna see what I’m made of? Bring it on!” I felt better for the two days before my next treatment, which was nice, although it kind of just pissed me off.

The third treatment had me stumbling out of the Cancer and Blood Disease Center like a drunk out of a bar at closing time, and I really thought I was going to lose it on the way home. I wanted to go bury myself somewhere until it was over, but I couldn’t even sleep through it. My equilibrium was dislocated temporarily and I had this tendency to walk into things… things like walls… but my body seemed to be adjusting to the large doses of poison being administered to me bi-weekly and I not only recovered from the treatment pretty quickly, but I felt rather good.
My memory seemed to be affected, though; I couldn’t remember appointments and my word recall was noticeably diminished.

The fourth treatment made me sick at the center, despite my hard core nausea pills (there are three of them in a pack, one for the day of, one for the next day, and one for the second day after treatment and they are sold at a hefty $354/pack). I had to get additional nausea medication, administered intravenously for maximum effect, before they would continue my treatment. For the rest of that day and the next day I could barely stand, never mind walk all the way to the door to let the dog out. I have never felt so helpless and pathetic; I seriously don’t think I would have been able to stand up and wash a dish to save my life.

However, my body is amazing. It was learning how to deal with the chemo extremely well and while I was indeed knocked completely off my feet for two days, I recovered even quicker than I did from my third treatment and I almost feel normal. You probably have no idea how amazing you actually feel right now because the way you feel is normal for you, but please believe me when I tell you that chemotherapy gives you a whole new appreciation for feeling healthy, and when it occurred to me that I ought to go for a brisk walk I almost leaped out of my skin for joy that I felt good enough to want to exercise.

Unfortunately, though, my brain malfunctions have worsened. Not only can I not remember things and recall words from my vocabulary, but my ability to listen and pay attention are at an all time low.

First of all, I cannot remember my short term memory. “Hello Jim. My name is Joey. It’s nice to meet you. What did you say your name was again?” It is really quite annoying, especially for grocery shopping.

What bothers me more, however, is my inability to recall things that I know I know, like words. You know how sometimes you’ll try to think of a word but you temporarily forget it? It’s right there, hiding around a corner that you can almost see around, but you’re at just the wrong angle to get a glimpse? Well “chemo brain” is nothing like that. The word isn’t hiding anywhere – it’s simply not there. It’s not on the tip of your tongue and you have no hope that you’re going to remember the word you wanted to use – all you know is that you used to know a word that conveyed the thing you’re trying to communicate, but you can’t even remember what letter that word used to start with. There are no walls or corners or shadows, there is only a vast expanse of very well lit white where your diverse landscape used to exist, showcasing how thoroughly you’re being cleansed.

While that alone makes me feel stupid when talking to people, my inability to keep a train of thought and to pay attention to what people are saying to me makes me want to avoid social situations all together. I’ll be in the middle of a conversation with someone and they’ll be talking to me and I will just stop registering what they’re saying and zone out, and my internal monologue is going “Hey! Joey! Listen! Pay attention! What are you doing? It’s not that hard, just listen, damnit, LISTEN!” I try to force myself to focus on what the person is saying, and I’m looking at them the whole time but I cannot decipher what words they are using; all my brain registers is a kind of humming buzz. As I start to zone back in it’s like coming up out of a swimming pool and all of those muffled, jumbled sounds become discernible utterances.

By this point, however, I have completely forgotten what we were talking about in the first place, and when the person looks back at me waiting for a response, my only viable course of action is to admit that I have no idea what’s going on.

Internal Struggles of Firey Sandstorms and Owie

Every day I drive 20 minutes to the Cancer and Blood Disease Center to get a shot of Neupogen. I get this shot everyday because one of the chemotherapies I am on destroys white blood cells and platelets like gasoline and fire destroy ants – quickly and violently. This chemotherapy is called Adriamycin, aka The Red Devil, and is a particularly harsh medication, causing massive destruction to everything good (and hopefully everything bad) in my body. It more or less has the effect of not only destroying my immune system, but also of destroying the production of my immune system.

The Neupogen shots, which burn going in, help the chemo ridden body by stimulating the creation of new white blood cells and, toward the end of the two weeks between treatments, manages to push start the bones into creating white blood cells on their own again. The point of this is not merely to help prevent me from getting colds easily, however, because while that is definitely a concern, the main concern is preventing neutrophenia, which is a deficiency in a particular type of bacteria fighting white blood cells. Neutrophenia in breast cancer patients can very quickly become life threatening because the adriamycen completely destroys most of these cells and creates a bacterial infection producing haven. My white blood cell production ceases for between 9-12 days before my body begins to recover and regain its functionality, at which point I receive another treatment and start all over again.

At this point, when my body starts producing white blood cells on its own, the Neupogen serves to make my bones work quite hard to stimulate excess production and make up for lost time, which is very strongly noted in the bones.
The pain induced by this extra stimulation is, like everything else chemo related, difficult for me to describe because I have never felt anything even similar to it.

I usually start feeling it in my legs as one of those types of pains that desperately wants you to soak, stretch and rub it, and it seems to me that my Femurs are the most zealous over-achiever bones in my body. As the pain becomes more intense, it also spreads and changes in nature; usually joints, especially my hips, knees and shoulders, are the next to join in. The pain starts turning into a powerful ache that hurts regardless of movement and is past the point of wanting to be rubbed out. The hips and thighs become so internally saturated with aching pain that going up stairs, crouching, bending and twisting all become extremely difficult and incredibly painful. Moving in general becomes highly irritating.

Eventually the ache seeps into all the bones and sets. At this point, I have learned, it is advisable to avoid all sneezing and coughing. The intense winds created by those two actions stir the scorching desert sands laying dormant in the bones and thrust forth storms of uncontrollable force made of sand, fire and ice. These storms blast through and reverberate within the sternum and rib cage, penetrating, burning and stripping with fire and ice.

Because my immune system is under heavy attack and suffering severe causalities, and because it is December, with its stress, holidays, colds, flus, tourists and fickle weather, sneezing and coughing come far too regularly to this foreign existence of mine.

The intensity and true feeling of this pain is difficult to properly convey, for, as I have said, it is nothing that I have ever felt before. The aching as I have described it is only similar to other pain I have felt in the way that it wants relief in the beginning, but the way that the bones hurt was previously completely foreign.

The worst of it only lasts a few hours — from about five hours after I am injected (usually around 10am) until I fall asleep at night (around 11pm) — and it only gets really bad in the last two or three days before my next treatment, because the rest of the time my bones aren’t producing white blood cells on their own and therefore are not being overworked. Granted, the ache and difficulty with movement occur for about the last five days of the cycle, but it’s not all sand and fire storms, so at least I’ve got that going for me.
And besides, intense aching and infernal sandstorms that ripple outward from the depths of my bones are way better than neutropenic fever, infection and death.