Pink Lemonade

New Address

2008-04-03T00:26:00.003-04:00

Dear Supporters,

I've decided to switch from Blogger to Wordpress because Wordpress gives the author more options and blog perks than Blogger does.

The address is: http://grovemade.wordpress.com

If you guys don't like it as much I may decide to continue here at Blogger, but if everyone finds Wordpress just as user friendly then there I shall stay. Please let me know what you think, or at least if you don't like it as much. : )

See you there!

-Joey

Expedited Processing

2008-04-01T23:26:00.005-04:00

When my mom was a child she used to go to the soda shop down the street from her house and order vanilla soda; she loved vanilla soda. She tells me that it both soothed her stomach with its light, bubbly sweetness as well as her senses with its warm, comforting scent. Recently she has been scouring store shelves in various grocery stores hoping to find her childhood love in a canned, processed form, but to no avail. She changed her tactics to searching for a vanilla flavored syrup like the ones they use at Starbucks, but, again, with no luck. So one day when she asked me if I had any idea where she could find some, I recommended that she make it herself and then explained how she might do this.

Unfortunately that didn't work out so well for her, so when I went over to her house this morning I decided to try to make some before I left for school. Now, mind you, I had never done this before, but it seemed to be turning out alright, so I went for the club soda to give it a try. The bottle of club soda I picked up was a sealed bottle, and when I broke the seal it became apparent that it was a sealed bottle that had been shaken or dropped, because it sprayed everywhere in the one second that it was barely open. My mom and I were dripping with club soda, which my niece found hilarious, and as my mom threw me two towels, one for myself and one to mop up the floor, the phone rang.

My mom picked the cordless phone up off the table, groaned, hit the "talk" button and handed it to me as I looked up.

"Hello?" I said uncertainly, only guessing who the entity on the other end of the phone was.
"Hi, is Joanna there?" came a familiar female voice.
"This is Joanna."
"Hey Joanna, it's Angie from the cancer center," she told me almost apologetically.
I breathed in deep and turned away from my mom, "Hey Angie."
"Dr. Chirayath wants to talk to you about your ultrasound and mammogram results," she told me. I closed my eyes and braced myself, knowing what it meant. "I don't know what your schedule is like today," she continued, "but you could come in at 3:30, or if today isn't good for you you could come in at 1:30 tomorrow or a little later at 2:45."
"No," I say, shaking my head even though I know she can't see me, "I'd rather come in today."
"I thought you probably would," she answered with something like sorrow in her voice. "See you at 3:30."
"Ok, 3:30," I said and hung up the phone.

I turned around and immediately started explaining to my mom how I needed to call Bryan to ask him to get my professor's cell phone number out of my notebook so I could call him to let him know that I wouldn't be able to make it to class, and as I was stumbling over my words and fumbling with the phone, making some haphazard attempt to put it in an occupied space on the table, she grabbed me and pulled me into her, hugging me, and I went completely silent. We just stood there like that for a minute until Emma, who was sitting in her highchair eating and could clearly sense the sudden change in emotional atmosphere, made a very loud noise, breaking the silence. We both released and turned to see her staring at us with her beautiful blue eyes wide open and a look of concern and bewilderment on her face.

I went outside with a pencil and a piece of paper I took out of the garbage. My fingers clumsily scrolled to Bryan's number and hit the "talk" button. There was a lot of noise in the background when he answered, indicating to me that he was nowhere near my notebook. I told him what I needed and he said he'd call me back with it in a few minutes. I sat in the sun on the front porch with the towel my mom had thrown to me slung over my shoulder, waiting. I felt myself shake inside and I closed my eyes and breathed in deep to keep myself together; behind me I heard the door open. "You have to smile now," I thought, and wiped the corners of my eyes. Mom sat down next to me and Emma leaned toward me with her arms open wide, seeming to sense that I needed a hug and knowing that she could make me smile.

I called my professor but he didn't answer, so I sent him a somewhat long and rambling e-mail starting with what I have been doing concerning my research project for class and then detailing the events in my life over the past two and a half weeks. He called me about 20 minutes after I sent it and told me that it was quite possibly the most amazing e-mail he has ever received. He said that I shouldn't worry about missing class, that he couldn't imagine me making any other choice, and that I also shouldn't fret over my project. He ended the conversation by telling me that I'm a wonderful student and that he is very happy to know me. It made me smile.

Later on my mom, sister and I sat in the Cancer and Blood Disease Center talking to Dr. Chirayath. She said that the ultrasound report said that the lump is definitely solid, thus not a cyst, and that the margins are irregular, which is bad. The mammogram report said that the lump is definitely solid, but with no detected irregularities, which is good. Unfortunately, the two reports are conflicting on the irregularity standpoint, and even less fortunately, the ultrasound got very good pictures. Dr. Chirayath suggested that I do one of the following: 1) I could get an ultrasound guided core needle biopsy at the center, because while the lump is small, the ultrasound got "very clear, very good pictures" and would allow for a good sample or 2) I could have it removed by the surgeon that did my lumpectomy, Dr. DuPont, and then analyzed.

I have an appointment with Dr. DuPont at 4:15 tomorrow afternoon.

Inferences of a Stressed Body

2008-03-31T19:11:00.002-04:00

"She is hurting me," the breast said of the mammogram technician squishing it between clear plastic plates, trying to get a good picture of the pea sized lump positioned inconveniently close to the rib cage.
"I know, I know," soothed the supportive brain, "but we need some good pictures. You can tough it out, I know you can!"
"Yes, I know that too," replied the breast in its eerily soft, calm, plural voice, "She is just taking so many pictures, and it was already hurting from the the fingertips poking it so much."
"Yeah, I know, I'm sorry," the brain apologized, "It's not always easy to control those fingertips, though."
"We didn't mean to cause you discomfort," the fingertips said, "It is just difficult to not touch something that doesn't belong."
"I know," the breast replied calmly, "But it is not the pain that bothers me so much as the manner in which it hurts."
"Stop," the brain said sternly, "Just stop. Bob's dead."

--------------------------------------------

"Why is she starting on that side?" the breast asked of the ultrasound technician, "The lump is all the way on the other side."
"I don't know," answered the brain, "that doesn't even make any sense."

--------------------------------------------

"She sure is taking a long time with this," the brain said quietly.
"Yes, and I think she might be having a difficult time seeing it," said the breast.
"Are you having a hard time seeing it on the screen?" the mouth vocalized to the technician.
She looked at the eyes and answered, "I'm sorry, I can't answer that question."
"Why does she look like a deer in headlights?" the eyes said nervously.
"And why does she sound so nervous?" the ears demanded.
"It's alright, guys," the brain tried to soothe, "It's just that we put her on the spot. She didn't expect us to ask."

--------------------------------------------

"Alright. I'm going to go speak to the radiologist," the technician said to the eyes, "Wait right here." She stopped at the door and turned around and added, "The doctor might come in, just as a heads up," then left the room.
"What the hell?" said the brain.
"Ooooo.... We didn't like the look in those eyes," the eyes commented.
"Why did she say that?" questioned the ears.
"Shhh... just read the article," the brain said.

--------------------------------------------

"Ok, you're all done sweety," the technician popped her head in the room and announced ten minutes later, "Go ahead and get cleaned up and dressed. I'll be out here when you're done."
"Whew... see, it's fine," the brain said.
"Yeah, sure, fine..." the eyed and ears said simultaneously.
"Stop it!" the brain demanded.

--------------------------------------------

"We told you it felt familiar," the fingertips said to the brain on the way out of the hospital.
"Will you shut the hell up already? Jesus! It's probably just scar tissue," the brain responded angrily, "We don't even have any damn results yet!"
"It hurts the same," the breast chimed in, "And for the same reasons."
"What do you know about 'the same' since surgery? You're too fucked up to know how you feel," the brain insisted.
"You know better than that," the breast said, its eerily soft, plural voice not cracking, "I know you feel it too."
"Yeah, and you know somethin else?" they eyes demanded of the brain, "We don't need some damn results to tell us what the look on that technician's face meant."
"And we don't need em to tell us what that nervousness in her voice meant," the ears insisted.
"Alright... Look," the brain said more calmly, "we're all being a bit irrational here. We're seeing, hearing and feeling things that aren't there just because we're nervous. We all just need to play it cool and settle down. It could be just a cyst!"
The fingertips were angry at this suggestion, though, and yelled at the brain, "God damnit! We told you what we felt. Why won't you listen to us?"
"It is true," the breast added calmly, "it feels the same. I remember."
"Fine. Think what you like. But would you all please do me one favor?" the brain asked, "Could you all please just SHUT THE FUCK UP until we get the results? You're giving me a SERIOUS headache!"

PET/CT With Oral Contrast

2008-03-28T15:46:00.002-04:00

I haven't written here about anything pre-chemotherapy, about the whirlwind of tests, scans, doctors and information that swept me up and spun me around at will in the 16 days between diagnosis and surgery. Those 16 days did not belong to me; I was directed where to go and when to arrive, sometimes with less than a days notice. "What are you doing tomorrow" was a laughable question because, honestly, I could never be sure. It was a fast paced, uncoordinated, back breaking dance that involved a lot of jolts, twists, jumps and dramatic dips.

The imaging scans that I went for included an ultrasound, a mammogram, an MRI and a PET/CT scan.

This last one is the kind that I had on Tuesday as the standard follow-up as well as a diagnostic test. This time, unlike the first time, it was a PET/CT with oral contrast. This is how it went:

I arrived at the PET/CT center behind the Cancer and Blood Disease Center at 10:45am. The nurse brought me to a room right away, asked me a few questions, pricked my finger to check my glucose level and then brought me a HUGE cup full of orange liquid and told me to drink it (barium, perhaps? I forgot to ask). I would have 45 minutes between then and the second cup, so I should take my time. The orange liquid tasted like some kind of powdered citrus flavored kids drink and left a less than desirable taste in my mouth that stuck to my gums. I recommend against this beverage in any normal circumstances.
This was the oral contrast part, and the purpose of the orange stuff was to outline my organs so that they could get a clearer image of my insides when they imposed the CT images over the PET images to create a 3D image of my body.

About 20 minutes later the doctor came in and inserted an IV into my arm. He then went into the RADIOACTIVE MATERIALS room and came back a few minutes later wearing thick, blue protective gloves and carrying a sack of radioactive glucose to be injected directly into my bloodstream. "There's no chance at all that you're pregnant, right?" he asked.
The purpose of this stuff was to infiltrate all of the cells and light up any active cells. Since cancer cells are more active than normal cell, they would light up brighter than other cells. Because all cells use glucose they will all ingest the radioactive glucose and thus allow themselves to be seen. The patient is not allowed to eat six hours prior to the test and is told to only eat a light meal of lean protein, such as eggs, and absolutely NO carbohydrate rich foods the morning of the test if their scan is scheduled for the afternoon.
I saw the images the first time I had the PET/CT scan done and my tumor was definitely the brightest thing in my body, besides my kidneys, which were filtering the the stuff out. The doctor this time said that the radioactive stuff was like "liquid light."

After an hour or so of drinking orange stuff and 40 minutes of letting the radioactive stuff soak into my cells, the doctor brought me into the procedure room. I laid down on the long, thin white table, the doctor put the triangular pillow thing under my knees, I put my arms up over my head, the doctor raised the table to the level of the tube I was to be passed through repeatedly, adjusted my head and then left the room and took cover behind the big, protective glass window of another room.

I was thankful that this room was warm, because the first time I had this scan done was at a different facility, and it was so cold in there that the technician, Todd, put two blankets on me before he left the room. Even then, though, I was still cold by the time I got done.

The table slowly moved into the tube and I could hear the soft swooshing sound of something turning round and round and round inside the plastic shell. A clear glass ring ran around the inside rim of the tube and I could see an off white ring of unknown size with what appeared to be small, flat, black glass rectangular surfaces, possibly lenses of some sort, evenly spaced apart spinning on the inside. I guessed that it was the white thing that was making the noise. The table moved very slowly in and out of the tube, staying completely still for stretches of time while particular parts of my body were scanned for medical data.

When it was all done the doctor came back in and asked if I wanted to see my pictures. I said sure and he showed me the 3D images on his computer in the safe room. I could see my port and the tube leading to my jugular very clearly, and saw the metal clasps and adjusters of my bra on my back and shoulders. I asked him what some spots were on the side of my breast that the lump was found, and he said he didn't know and that he hadn't seen anything too exciting at that point.

Today I went in for my lab post-chemo (which I have gotten every week once a week since I began chemo, more than once a week with the first regiment of chemo) and saw my doctor while I was in the back. She informed me that the PET/CT scan came back clear, but that those scans are not very good at picking stuff up inside the breast and that because the lump she felt was small, I needed additional tests. She wrote me an order for an ultrasound and a mammogram.

On my way out I stopped at the desk and handed Ellen the test orders. She asked which hospital I wanted and then called them. She said that she needed the tests ASAP, and while she was talking to the woman at Citrus Memorial I heard her say, "No, that would absolutely not be suitable," and then while she was on hold she looked up at me, shook her head and said, "April 8th? Yeah right!" I laughed and told her we might as well push it back a couple of weeks. "Who cares?" I said, joking. "I do," Ellen replied firmly. I smiled and felt very lucky to have people like Ellen, Dr. Chiryath and the nurses advocating on my behalf now.

The Fallacy of Mind Over Matter

2008-03-28T15:20:00.000-04:00

Written 03-23-08

I first noticed an unfortunate indentation in the surgery area on February 22 while my mom and I were at the Jacksonville Hyatt Regency for the Young Survivors Coalition conference. I was disappointed that the side of my breast had sunken in almost five months after surgery, and I was less than pleased with the overall cosmetic appearance of it, but I figured it was better than having cancer and decided to just be done with it.

Over the course of the following couple of weeks I found myself critically assessing the long dimpled area in the mirror, wondering what any future Mr. Joey B's would think of my poor, scarred, misshapen ex-beauty queen breast. I decided that it really wasn't of any immediate importance because, in all honesty, I am not anticipating becoming involved in any such relationships any time in the foreseeable future. So, with apathetic flourish, I gave up on critical self assessments and dissatisfaction.

Meanwhile I had been scouring the internet for information regarding young women with breast cancer for a research project I am doing for my Social Constructions of Reality course. Through my searches I have stumbled upon many personal stories and memoirs of young women breast cancer survivors who found out that, in the end, they would not survive. One of these stories was from a woman living with metastatic disease, which, as I have mentioned before, is when the breast cancer travels to other organs, the bones, blood or soft tissues. In this woman's story, she found a lump in the area of her breast that the lumpectomy was preformed. Her doctor brushed it off as scar tissue and told her not to worry about it. Well, she worried about it anyway and found out later on that not only did she have a new tumor in the same area, but that the breast cancer had metastasized to her liver and bones.

Naturally these kinds of stories play on the mind of someone going through the same ordeal that these diseased, dying and dead women had, and one night while I lay in bed unable to sleep, as I have many nights as a side effect of chemotherapy premeds, I decided that rather than take Tylenol PM or count sheep, I ought to give myself a breast exam. My left breast, the whole, pristine, unscathed one, felt the same as it always has; no lumps, no scars, no tender areas. The other side, however, is different. As a lingering side effect of breast surgery and lymph node removal, I have had pain and tenderness in my right arm, underarm, side and breast due to nerve damage and irritation. I have been aware of an increase in this pain which I attributed partly to the Taxol, which has caused nerve damage in my arms, legs, hands and feet, leading me to believe that the increase in pain on my right side is not a big deal. But as my paranoid finger tips roved the altered landscape of my right breast, they stumbled upon a little hard spot.

"What is this?" my brain asked my fingertips.
"Feels like a pea," the fingertips responded.
"What is a pea doing in there?" the brain demanded.
"Don't know, but we can't move it," they told the brain.
"Perhaps it's just scar tissue," the brain rationalized.
"Perhaps," answered the fingertips, "but this consistency sure does feel familiar, and we've never felt scar tissue before."
"But we're still on chemotherapy," the brain retorted, "and couldn't possibly be growing any new cancer already. We haven't even read any stories about that kind of thing happening. You fingertips are too paranoid."
"Sure thing, boss," the fingertips conceded. But the fingertips couldn't stop touching the area, no matter how many times the rational brain insisted that it was nothing.

I mean, seriously, I was still on chemo!

But even so, it is the case that under circumstances such as cancer, the rational mind has been known to become irrational. For example, a recurring headache for a week is no longer a question of whats in the air, it is a question of whether or not the cancer has spread to the brain. And when blood starts coming out every every time you blow your nose, it goes from questioning what's up with your sinuses to wondering how long you have to live before the cancer takes over your brain and kills you.

Thus the rational mind becoming irrational and then trying to rationalize away it's paranoia has a tendency to work itself up into quite the tizzy. Knowing that this has been the case before, my mind decided to play it cool and not worry about the whole thing; my mind decided to be calm about it and wait until the next time I went to the chemo center to bring it up to anyone, and my mind felt validated when I mentioned it to the nurse who asked me the standard pre-chemo questions and she responded, "It's probably just scar tissue, but we'll have the doctor take a look at it." My mind was glad that it didn't get all silly and irrational and go calling the doctor first thing in the morning after I had found it.

That is, until the doctor took a look at it.

The doctor said that we needed to have it scanned right away, that she didn't like the way the skin was dimpling. She wanted an ultrasound done ASAP. She wanted to know when I found it and why I didn't call her immediately. Any new lumps, she said, needed to be brought to her attention right away.

And so on my last day of chemotherapy, on the day that I have been looking forward to since I woke up on October 5th, 2007 and was told that I would be needing chemotherapy because, yes, it was in my lymph nodes, I found myself feeling lost, empty, drained, disappointed and frightened. How would I do this all again? What would it mean? Would it mean that I can't beat it? Would it mean that it was stronger than the strongest drugs they have to combat this kind of thing? Was I going to die from cancer? How could I die from cancer?

I was in a strange mood for the rest of the day, and that night I applied for life insurance policies. I thought that at least I would be able to leave something for my family, help them, give them something; but the next morning an insurance agent called and informed me that I wouldn't be able to get a life insurance policy for three to five years after my last cancer treatment, and that if I got insurance between the third and fifth years that it would be very expensive.

I felt helpless, crushed and sad. I wondered how far I would be willing to go to get rid of it and what exactly "fighting till the bitter end" would entail. Would I be required to sacrifice quality of life to live an extra couple of days? Would I be able to do all of the things I wanted to do until I died? How would we deal with a blow like this? I'm already such a financial drain on my parents, and my money is almost all gone.

How would I tell my family? How could I possibly tell them?

These thoughts, along with thousands of other, similar thoughts swirled in torrents around my mind, through my night and day and in between.

We celebrated Carrie's 22nd birthday on Saturday on a Suncruz Casino boat. She did fantastically on the slot machines, and we all had a wonderful time. For those few hours I didn't think about it, didn't worry about it, didn't wonder and fret. I just laughed, played and had fun. But when we were home again and I was driving off in my car, it was all I could think about.

It is Easter Sunday now. I am scheduled for a PET/CT scan on Tuesday at 11am. Cancer patients are supposed to get one of those after they finish chemotherapy anyway to see if the cancer is all gone. I'm not sure when the doctor will call me with the results, but it feels like I can't know soon enough. I haven't told anyone about the lump or how concerned the doctor seemed because I don't want anyone else to go through this slow, mind controlling, obsessive torture. We have been through a lot, my family and I, and I know that watching me go through this has been nearly as difficult as going through it, so I thought I should spare them and do all of the extra worrying myself.

Influential Insurance: Killing The Patient

2008-03-19T14:00:00.008-04:00

Lately it seems that almost every day I hear about, read about or am told about directly by a breast cancer patient how they beat breast cancer and then, not too long after, it metastasized, which means that it spread to other organs, bones, or the blood or soft tissues. Once this happens it is difficult to control because of its aggressive nature, and the only way to get rid of the cancer is to die. The most frightening part, for me, is that all of these stories are coming from women under 50, most of which are under 40 and a significant portion of which are under 30.

The settings are always random: Monday night's breast cancer defeat story was told to me on the way out to the parking lot from my brother's baseball game by a complete stranger. I was walking with my parents and niece when suddenly a woman said, "You have the same haircut as me." As I turned, she took off her hat, and it was clear from her tired, black rimmed eyes that she was a cancer patient. She told me all about how she'd had it once at 38, gotten rid of it, and then five years later it was in her lungs. She never had insurance and didn't get scans (because they are REALLY expensive) until she had symptoms, at which point it was too late. Upon departing in the parking lot she said to me, "Good luck. I hope yours doesn't come back."

Each time I hear one of these stories I feel a little less certain about the success of my treatments and wonder if I should be doing something different. I have started considering all of these different miracle treatments that everyone and their sister's mother's great aunt has told me about and wondering if I should completely change my lifestyle. Blue green algae, zeolite, methylglyoxal, goji juice, all varieties of berries, ph levels, immune power herbal formula tea... I need a serious transformation in everything, apparently. And I think I should live by the ocean.

One of the most unsettling things I've read so far, though, is about a girl named Kristy Lasch. She was diagnosed in 2000 at 22 just after she had finished her BA degree at UM. She had surgery, went through chemotherapy, and then went on with her life. Everything was fine.

"After finishing her treatment and reconstructive surgery, Kristy's hair grew back and she regained her strength. She decided to accept a position at the University of Miami while pursuing her M.B.A. Kristy planned a big celebration for her 25th birthday with her friends. Life was returning to normal. Kristy became active in the Susan G. Komen Foundation and spoke at the 'Race for the Cure' in October 2003. She continued to have blood work done every 6 months, as covered by her insurance, and the tests continued to come back negative for cancer. Her insurance didn't let her get the scans because her blood tests came back negative. Apparently there are a significant percentage of people for whom cancer does not show up in the blood test and would go undetected without a scan.

In May of 2003, Kristy began experiencing pain in her stomach and back. Doctors reassured her that she was fine because her blood work looked normal. The pain came and went throughout the summer of 2003 and by August, she was sure that further tests should be done. Kristy had a scan done. She was diagnosed with cancer in the bones and the liver, and began an aggressive chemotherapy treatment soon after the diagnosis. "

She died on October 3, 2004 at age 26.

I guess the insurance company's main objective is to make money, and the best way to make money is to insure only healthy people. If people aren't healthy, it's a burden to insure them, so it is best to get them off the policy one way or another.

Good job you sick fucks.

Influential Insurance: The Neutropenic Patient

2008-03-15T01:06:00.006-04:00

(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

2008-03-14T23:54:00.005-04:00

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 the 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.

Comments on the Stages of Re-growing Hair

2008-03-13T22:08:00.008-04:00

About a month and a half ago I was in Publix picking up some snack foods for a movie/study session with some classmates. I had forgotten to bring a hat with me, as it was a warm day and I was feeling quite comfortable and didn't think of it. I was standing in the produce section trying to decide between the big bag of carrots and the small bag of carrots when a woman comes up next to me and seems to be similarly contemplating the carrot situation. Suddenly she said, "So did you do it on a dare," and I thought that she must be on the phone with someone... but then she finished her sentence: "or did you just shave it because you felt like it."
Of course at this point I knew that she was talking to me, but I delayed the looking up response by about five seconds because I was uncertain of how to respond. She picked up a bag of carrots and was looking at me when I finally ded look up. I said, "Uh, no... I have cancer and it fell out because of the treatment. It's just starting to grow back."
The woman's face went kind of blank and then quickly regained composure and she began explaining to me that she was asking because her daughter is in the habit of shaving her head randomly as well as coloring her hair blue, purple and pink.
At the time my hair didn't exactly look like it was buzzed; it looked more like it had fallen out and was just starting to debate whether or not it should come back; it was fuzzy, sparse and very, very soft. Really, it looked like more like the fuzz on a rabbit's rump and less like human hair. But I wasn't angry; the woman just seemed to be looking at me from a specific angle that she was familiar with and I wasn't. So I talked to her. We laughed and joked for about 15 minutes and when we departed I hoped that our interaction wasn't one of those incidents that she would look back on in ten years and think, "I can't believe I did that... I'm a terrible person." (Or anything of the sort)

..........................................................................

Recently my hair has started to look more like hair and less like ducklings. I have even discovered that I have a white patch growing in the very front and center of my hair line. I'm hoping that the old age has been concentrated specifically to this area rather than being evenly distributed all around my head, that way I can look cool like Rouge from X-Men rather then like old from Life.

Unfortunately this also makes me look like "rebellious" from "the youth," which is very much frowned upon here in good old Homosassa Florida, where they prefer "inbred" from "the rednecks" over anything representing "not conservative" (which included McCain until he became the Republican presidential candidate).

Anyway, my new hair growth includes most follicles, but not all of them yet, because the chemotherapy is still attacking my being. Because not all of my hair has chosen to come back at this time, I have chosen not to let it grow to any significant length because I prefer not to look like an under-nourished animal.
This apparently has the effect of making me look like a rebellious teenager and therefore gives people the right to stare at me without inhibition and give me disapproving looks.

Today I did not bring a hat with me when I went to Publix and I got lots of these stares and looks, starting in the parking lot and mostly from senior citizens, especially of the female variety. When I had picked out a package of chicken breasts and was walking away from the poultry bin, an older, male Publix employee said to me, "I like your hair cut."
I couldn't help but laugh because it just seemed so random and struck me as funny. I could tell from the confused look on the man's face that this was an inappropriate response, so I tried to wrestle my laughter into submission while spewing out a surprisingly coherent "thank you."

People that I am close to told me while I was bald that I "pull the look of well," (I like to believe that they weren't referring to the cancer look in general) and my mom has told me many times that I look really good with super short hair.
I have heard "It's just like _______ (choose: Sinead O'Connor, J.I. Jane, Natalie Portman)" repeatedly from lots of people and my dad, brother and most of my brother's friends have shaved their heads in tribute. I was simply happy that my head is a good shape and that my ears aren't large.

I like not having much hair and now that I'm mostly used to it I find that when I look at pictures where I have long hair, I am surprised at how strange I look. At some point in the not too distant future the poison will finally drain completely out of me and hair will spill forth from my unpolluted scalp and redecorate this head of mine. I will then be faced with something that was more or less taken away from me on October 5th, 2007 when the surgeon found that the cancer had spread into the lymph nodes, thus making chemotherapy an important part of killing Bob: a choice regarding the aesthetics of my body. Sure, I could have chosen to leave the lump there and remain unscarred, and I did, after all, choose not to have my breast taken off all together, but those were forced choices that I wouldn't have made had I been cancer free, so I don't really count those.

Regarding my new hair, though, I have all kinds of choice, more now than I did pre-cancer, because it is entirely likely that I never would have chosen to cut my hair so short, never mind buzz it, were it not going to fall out in the first place. I used to be in the habit of growing it very long and then putting it in a ponytail and having it cut about chin length and donated to Locks of Love. Now, however, I'm considering keeping it very short... at least for a while.

But those looks, those unapologetic stares and presumptuous opinions you can see forming behind their eyes. I often avoid looking at people these days because sometimes I just don't want to deal with it. Before, when I was bald and my eyelashes and eyebrows were mostly gone and I was pale and sickly and just generally looked like a cancer patient, the looks were different. There were kind eyes and apologetic smiles (for staring, I think) and there was no nastiness. As soon as it started kind of coming back, though, the looks started to change. Slowly at first, and I thought that perhaps it was in my imagination, that I was subconsciously afraid of what people thought (which is not a normal habit of mine). But then people started randomly saying stuff, usually at a Publix store (but never at the same one), and old ladies started giving me bluntly mean looks and people started staring unabashedly and with a tinge of disgust, like I've done something that has torn the moral fiber of our great nation and deserve to be punished by means of rude behavior from the morally superior.

On the other hand, on the days that I feel good and am most similar to my "normal" self, these stares and looks not only lack the effect of making me feel like I need to justify my hair, but they make me want to keep my hair varying lengths of short, sometimes longish to show off the white, with the express intention of making people gawk openly and make comments. Perhaps I'll start wearing t-shirts that say stuff like, "Young people get breast cancer too. Stop staring and tell your granddaughter to check herself," perhaps with "you morally superior bitch" in very small print at the end of the sentence.

In any case, it is interesting to be me, and I must admit that I very much enjoy it. And the oddities and downsides? Well, they just serve to make it more interesting. After all, variety is the spice of life, right?

Text Messaging

2008-03-02T13:53:00.003-05:00

me: "I had ice cream for dinner and now I'm bloated."
Paul: "Haha, sucks to be you"
me: "Nah, it's cool to be me."
Paul: "Yea, you get to do all the fun stuff like tour Britain, grow bonsais, live with monkeys and fight cancer. I want to be you in another life."

On Having a Great Support Group

2008-02-29T21:38:00.002-05:00

You know what I haven't done yet? I haven't said "thank you," so I thought I would stop and say, well, thanks.

Thank you for your words of encouragement, your humor, your cards, the angel Christmas tree ornament (it's hanging in my kitchen, Trish!), the hats and scarves, the calls, texts, the e-mails, messages, post responses and cancer jokes (hey, I have cancer and laughter is the best medicine, why not combine the two?). They have all added enormously to my ability to cope with and laugh about all of my breast cancer ailments, which at times have been quite difficult to deal with.

And thank you mom and dad, so very, very, very much, for dealing with all of the insurance agencies, social workers, political representatives, Medicaid problems (because that's all they really want to give you), hospital/surgery/scan/chemo/doctor bills, collections agency notices/calls, and everything else money related, because I know that at this time I simply cannot deal with all of that horrible money related stress, pressure, anxiety, tension, arguing, fighting and ALL THOSE CALLS. Just looking at some of the papers lying about the house and hearing you or dad say "collections" makes my blood pressure go up (which is kind of ok because it's low anyway).

Where would I be had I not been surrounded by kind, caring, thoughtful, good humored family and friends? Honestly, I would probably be completely uninsured, beaten into submission by Medicaid's minions, tired of fighting and lying in a ditch with cancer taking over my body. And not laughing about it. At all. Cause it wouldn't be funny.
Instead I find myself in a warm home with a lovable puppy, a wonderful support system and only minor financial ruin. Yay for me!

But, most importantly to me, Yay for all of you!

Fridays With Doreen

2008-02-29T19:27:00.003-05:00

Eight weeks ago today I sat quietly in my recliner in the Cancer Circle (as I like to call it) receiving my second Taxol/Herceptin treatment at the Cancer and Blood Disease Center. Sitting in the recliner to my left was a seemingly cheerful older woman who, I overheard, was in for her first chemotherapy treatment. I also overheard her talking to the nurse about having lived in California and that she used to be a mental health nurse.

Now, I had never been much for conversation when I was there, as I usually tended to feel quite out of sorts and not at all myself, but my first Taxol/Herceptin treatment left me feeling relatively good and I felt up for conversation, so I asked Doreen about her life. We talked for the rest of the time we were there that day, which was quite a while as we both have treatments that run for approximately 6-7 hours in total.

The following Friday I walked back to the Cancer Circle and saw that there was a seat open next to Doreen. I happily took the seat and we chatted away the time. She gave me string cheese, dried fruit and nuts, although I had nothing to offer her.

We continued on this way, although we were not always able to sit near enough to one another to really be able to chat. Doreen has made me lunch on numerous occasions and brought me citrus fruit and small citrus trees and she has made me several knitted hats to keep my bald head warm (not to mention bags full of knit hats that she made and donated to keep other's heads warm). I have brought her strawberries and string cheese and, hopefully, as many smiles as she has brought me.

Today was Doreen's last of her eight treatments and while I am very happy that she does not have to have any more chemo at this time, I am going to miss her. We were able to sit near each other and chat today, and even though I didn't feel up to doing much talking for a couple of hours, the talk time we did manage to squeeze in was quite nice.

I have always dreaded going to the cancer center because that is the place I go to get shot up with drugs and poisons that make me feel disjointed, nauseated, achy, cranky, tired, out of sorts, not myself, weak, irritated and generally uncomfortable; but I found myself actually looking forward to chemo days because I got to see Doreen. We exchanged addresses, phone numbers and e-mail addresses, so hopefully we'll be able to keep in touch, but I'm going to miss Fridays with Doreen.

T-minus 23 Days

2008-02-28T14:49:00.003-05:00

My treatment tomorrow will put me at exactly 23 days away from my chemotherapy completion date. Exclamation points, smiley faces and asterisks could only work to undermine my excitement.

Tomorrow will be my 9th of the 12 weekly Taxol treatments I was prescribed, and while they have definitely been much easier to tolerate than the Adriamycin and Cytoxan treatments I had for the first two months, I am very much looking forward to purging all of these poisons from my system and starting on my path to recovery.

I am tired. Literally burned out. The temptation to skip classes this week, brush the papers and reading aside and sleep instead was almost more than I could take. My daily activities are continually hampered by my tiredness; it is similar to being perpetually drunk, except without any of the good feelings -- or perhaps it's more similar to being perpetually hung over: My head buzzes, my body aches, my vision is sometimes impaired, my speech sometimes slurs, and the abilities of walking straight, keeping my balance, listening, paying attention, remembering things and speaking coherently have never proved so difficult, nor have I ever felt so triumphant in being able to do any of these things in every day life. Of course, the longer into chemotherapy I go, the more tired I become and the more difficult these taken-for-granted abilities are.

But today I am turning around and looking at the light at the end of the tunnel, because it is not so far away now, and I am smiling, because even if the light is coming from the radiation I will be plunged into directly after exiting this damn tunnel, I've heard it's not such a dark and dismal journey, and certainly not so long at a mere seven weeks.

When I look in the mirror, what I see, is not myself looking back at me

2008-01-19T19:38:00.005-05:00

Sometimes when I pass by a reflective surface of some sort and turn my head to look, I am taken aback by what peers back at me.

It is not me in there looking out, that is for certain. I am a vibrant, happy, fun loving sister/aunt/daughter/friend/girlfriend who has a full and enjoyable life and loves to do all kinds of stuff at all different times of the day with the people I love; but that person in the mirror -- that person who could not possibly be me -- has quite obviously had the life sucked out of them by some terrible turn of events.

The person in the mirror is pale and sickly, void of hair, eyebrows and eyelashes. They are alien -- listless and lacking facial definition. I look at them in shock, bewildered at how they got in the mirror, but they wear only an expression of desperate and hopeless blankness, seemingly unable to register anything else, any other emotion, any emotion at all. Perhaps it is just I who cannot read the emotion on their alien face, though, so I concentrate harder.

I look into their eyes, their dull, tired, shadowed eyes, and I look for the life that I know is there, somewhere -- it has to be -- but I can't see it... why can't I see it?

MA+CB=OMGWTF

2008-01-17T18:04:00.000-05:00

On Tuesday, January 8th of 2008, I started graduate school at USF. I suppose some of my friends and family might have thought something along the lines of, "well it's about damn time," but, honestly, I wouldn't trade all of the experiences I've had in the past four years for a Ph.D, not to mention that I've contemplated everything from law school to master sommelier since I received my BA. Now, though, while I'm going through chemotherapy and putting myself several thousand dollars further into debt every week, seemed like the perfect time to start commuting from Homosassa to Tampa twice a week to attend grad school.

I'm taking two classes: Social Constructions of Reality on Tuesday nights and Communicating Race and Racism on Wednesday nights. So far, it has been interesting.

The first week was extraordinarily difficult -- more so than I anticipated. As I have mentioned before, I am currently finding paying attention, retaining information and speaking in a coherent manner an arduous task. I have a tendency to lose focus, forget everything and repeat myself a lot while talking in circles. As you may be able to imagine, reading text book type material is not easy.

It took me the entire week to finish the reading for my two classes; I would be reading and realize that I didn't know what I had just read, and at times the words just didn't look like English writing, so I would read the sentence again, then still not be able to gain any meaning from the words and read it again, go back to the beginning of the paragraph, still not understand what information the author was trying to relay, finish the paragraph in hopes of understanding something, and then read the whole paragraph over again. This is how I read 272 pages of assigned reading.

Now, I know that 272 pages should be a breeze considering how much we were assigned at the HC, but please don't hold it against me until I find myself reading exceptionally slowly after I'm all done with chemotherapy and radiation. Two months after I'm all done with that, it's fair game and you're welcome to ridicule me openly, but until then I will continue to cite "chemo brain" as the source of my constant in-articulation and inability to focus/understand/remember.

However, it is entirely possible that my brain, like the rest of my body, is learning to recover from the poison, for I have found this week much less demoralizing than last week. I have found that I am able to remember things much easier, even number sequences, which before was more or less impossible. I also don't zone out so easily and I'm only having to re-read sentences and paragraphs once or twice before I at least sort of get what the author is getting at. My favorite part, though, is that I sound slightly less brainless when I talk.

I believe that all of the brain exercise that I've been getting kind of made my brain say "Oh, crap, I have to process information! I'd better start fixing this place up, then." And so it at least seems like it's getting better, which is quite relieving.

The best thing about starting school right now, though, is that I feel more normal and less bored. Sure, it might be a little frustrating at times, but I'm doing something that I'd be doing under more normal circumstances, and it's making me work and put myself in the "normal" category of "student," which kind of helps to blur the definitive outline of "cancer patient," which is nice for me because it kind of helps to prove that category less viable in other people's minds, therefore causing them to view me more like they did before and thus causing them to tell me less frequently that they pray for me every night.

So, basically, this school thing is good, and I think I'll get through this semester just fine.

The Rebellious Youth

2008-01-09T23:40:00.001-05:00

I went to Publix the other day wearing a pink bandanna that one of the oncology nurses gave me. I bought an assortment of foods, including mussels, garlic and white wine. Naturally, I had to prove that I was old enough to purchase alcohol and when the cashier was looking at my ID she said, "I never would have guessed;" assuming that she was referring to my age I said, "Yeah, I almost always got carded before, but since my hair fell out I get carded for everything all the time, even cold medicine." She laughed and kind of made this sad face at the same time and said, "Well, at least it'll grow back, right?" to which I replied, "Yeah, my doctor told me it might grow back curly, but that it should go back to normal after a while, although she's had two patients whose hair never went back."

The woman standing in line behind me who was in her mid to late 50's and had previously compared her fatty foods to my significantly healthier foods said, "Mine didn't grow back curly, and the doctor told me the same thing." I told her that I was always perfectly happy with my hair and that I would love for it to come back the same and she told me that hers came back a little thicker, but who doesn't want thicker hair? I agreed, and then she said, "Did your hair actually fall out, or did you just shave it?" I immediately felt like I had to explain myself and told her how my hair had been to the middle of my back and I cut it short to kind of adjust to less hair and then when it started coming out by the handfuls that I buzzed it because it was getting everywhere and that I found it much less traumatic to have tiny bits of hair all over my hands than having endless handfuls of hair coming out. She kind of nodded and then announced how depressing it was to have your hair coming out by the handfuls.

I signed my credit card receipt, the cashier wished me luck in everything, said it was nice to see someone so positive and told me to keep smiling ("you have a beautiful smile," she said) and I left the store.

While driving home, I suddenly realized that the woman in line behind me was challenging me, actually challenging me to see if my cancer was legitimate, or as serious as hers was, or something... I don't know.
Why would she do that? Why would anyone do that?

And then I realized it was just like everything else... just like every other damn part of this whole cancer thing... it's the same reason doctors didn't treat it like it was serious in the first place, the same reason that the Health Department blew me off, the same reason the biopsy surgeon's office made me wait two weeks for a consultation, the same reason that woman gave me such a dirty look back in October for saying "at least it's a good month to get breast cancer," the same reason I can't get financial assistance and the same reason that no one can believe that I have breast cancer: I'm too young, and I look even younger. I don't look old enough to buy Tylenol Cold and Flu, never mind alcohol or to have breast cancer.

But hey, guess what, this just in: Cancer doesn't care how young I am.

Why does everyone else?

Don't Forget to Bring a Towel

2007-12-30T21:46:00.001-05:00

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 and 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 a few 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.

I Shall be Victorious

2007-12-20T21:27:00.000-05:00

When they say “fighting breast cancer,” they’re not kidding; it’s an all out cellular war waged against yourself, all because of those few rogue cells that you can’t identify and that couldn’t be reasoned with even if you did. In this situation, everyone is the enemy.

With every battle the injuries to my troops increase and the stuff we use to fight our unseen enemy with builds up in the dark recesses of my body, amplifying the potency of every onslaught against myself. In my imagination, as I sit in the recliner allowing my “cure” to be slow dripped into me, heavily armed microscopic men run for cover, trying to get away from the greatly injurious stuff that attacks all cells equally, regardless of race, creed, color or cancer; but it is of no use - they’re hit, each time worse than the last. In my mind, I can hear their helpless screams as their eyes burn, their lungs seize and their flesh melts away.

It becomes a battle just to be able to walk across a room without walking into anything - never mind walking in any semblance of a straight line - and major concentration and war time tactics are employed when walking any distance exceeding 20 feet to keep from falling over.

For now, though, we rejoice, because we have taken the last major hit and shall hence forth fight smaller, less potent battles against that which shall make me better; so while the injury from this last fight is still raw, and while the remainder of my hair pushes itself away from this poisoned and inhospitable terrain, we smile, because even through the worst of it, I didn’t puke.

Internal Struggles of Firey Sandstorms and Owie

2007-12-12T22:17:00.000-05:00

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.

I Remain Unconvinced

2007-12-11T11:07:00.001-05:00

This morning, while I sat on the floor at the coffee table staring blankly out the window thinking about nothing in particular and eating chocolate peanut butter ice cream, it suddenly occurred to me that lots of people die from cancer – all kinds of cancer – and more specifically that lots of women die from breast cancer. Now, while I have always fully comprehended the fact that cancer is a serious, life threatening disease, and while I have been with the constant understanding that I have breast cancer (quiet killer of women), I have never considered my situation serious or life threatening. Rather, I have had the tendency to continuously laugh at myself and make jokes about cancer – which I must say that I do not recommend unless you are at the point that you look like you have cancer, because if you do not yet appear to be afflicted and people hear you making jokes about your condition in public, you’ll get extremely disapproving looks, for morally superior people will automatically categorize you as a cold hearted bitch or unaware jerk.

I’m not sure if it was the peanut butter, the chocolate ice cream, or the combination of the two at 8am, but when I considered the facts this morning, I suddenly became acutely aware of my own mortality. This realization dumbfounded me – how could I, who have always been a relatively healthy individual, have something so aggressively deadly inside me? It had already crept into my lymph nodes and was on the verge of expanding the map, like an internalized version of Rise of Nations -- if its first large city hadn’t been so close to the edge, my capital would be in a very precarious position right now. The thing with this game, though, is that it’s me playing against myself; some rogue civilian cell of mine mutinied and started building its own separate, enemy city in my country. Thankfully it built on the outskirts where that kind of thing is more noticeable, not to mention frowned upon.

But who really wants to be killed by some cellular defector? I mean, if I’m going to die prematurely, I would at least like it to be by means of something external to myself; I would rather be mauled to death by a bear than die from some internal flaw. At least a bear is big, powerful, protective of its young and, most importantly, not me. Cancer is so microscopic and non-sentient. The idea of being under siege by something like that is really quite revolting.

Despite these realizations and the thought processes that accompany them, though, I remain skeptical of Bob’s power over me. It’s not that I feel that I can out think him, or even that I’m better than Bob, it’s just that for some reason I don’t believe in him. I’m alive and he’s living in me, which means he’s living off of my energy, and since it’s mine I can do what I want with it, therefore I’ll kill him. The End. I win.

It’s not that simple, straight forward and easy, though, and I didn’t really realize that until this morning. You can’t just say “Screw you, Bob, you’ve overstayed your welcome, get out of here,” and expect it to work. It’s not just there to stay, it’s there to take over.

Considering all of this, my mind is surprisingly similar to the way it was before my startling and all too obvious revelations of the morning, although it is simultaneously completely changed, like when they brought out the colorful new twenty dollar bills; it has the same function, value and overall appearance, but it’s a bit more up to date with finer detail, is more colorful and slightly more playful. But if all of my doctors told me that the survival rate for people in my category was 10%, I would automatically assume that I was in that 10%, and if all of my doctors told me that the invasion was out of control and I could expect to be taken over within a year, I would laugh harder than I did when I found out I had cancer in the first place.

My Pet Cancer

2007-12-10T11:24:00.000-05:00

I've been calling it "Bob" ever since we found the lump. There is no particular reason that I chose that name, and no particular reason I named it, it's just that one day Ben and I were standing around and I said, "I think I'll call it Bob," and so I did.

People seem to find it incredibly difficult to call cancer what it is, and instead of saying "I heard you have breast cancer," they'll say, "I heard you're sick."

But I'm not sick. I have cancer. There is a difference.

On the other hand, I not only have no problem saying "I have cancer," but I also seem to want to humanize it somewhat by calling it Bob. Psychologists could probably come up with dozens of reasons why I would do this, but I think it's because it makes it easier for me to consider everything in terms of fighting a unit, not a concept. I know that cancer is a bunch of cells that create tumors and is therefore a thing, but thinking of it as a single unit and calling it Bob seems, in my mind, to be a more direct thought process. I guess what I'm trying to say is that calling it Bob cuts out the large, imposing idea that the term "cancer" carries with it, all of the images, and makes it more of a thing that I can defeat.

A friend of mine was reluctant to even say "cancer" when discussing the technicalities of my cancer because, he said, he didn't want to empower it. I told him that I call it Bob and he seemed to be rather alarmed by this, but I explained to him that by naming it I was kind of making it mine, which kind of makes me feel like I have more control, even if I don't.

The Dowside of Being Noteworthy

2007-12-07T11:44:00.000-05:00

During one of my many visits to the Cancer and Blood Disease Center my oncologist said to me, "You are very unique, Joanna." I laughed, knowing what she meant, and said, "Why thank you." She smiled back and said, "It's not a good thing when the medical community finds you interesting."

One and Two and .....

2007-11-26T14:20:00.000-05:00

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

2007-11-26T13:54:00.000-05:00

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

2007-11-09T15:44:00.000-05:00

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

2007-11-08T23:15:00.000-05:00

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

2007-11-07T10:45:00.000-05:00

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

2007-11-02T23:27:00.001-04:00

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?