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On Friday, May 2nd at approximately 3:00 in the afternoon, I sat in the cancer center typing merrily away to Paul on my computer while upwards of $6000 worth of Herceptin dripped slowly into my body. The usual suspects were about: the nurses doing their nurse thing, the friendly older man with the terrible cough that always seems incredibly busy while he’s getting his chemo, the frail old man that always smiles at me but has never spoken to me, the old man with the walker and the oxygen that always talks to me but I can barely understand what he’s saying, the old Spanish looking woman who I’m almost certain never understands a thing the nurses say to her, and Mr. Bacon.
Mr. Bacon is probably in his 50’s. He’s trim and fit with silvery white hair, a sparkle in his eyes and a smile that could make even the meanest sour pusses smile. He’s the kind of guy that you can’t help but enjoy being around; the kind of guy that makes going for chemo entertaining. He is very witty, genuine and has a wonderful sense of humor that he uses to engage in playful banter with the nurses and make people laugh. He’s the kind of person that you want to be like when you’re his age and hope that your kids will turn out like. All in all, he’s a pretty cool guy.
Everything was going as it usually goes — nothing surprising or out of the ordinary had happened or seemed pending, which is favorable when you’re getting cancer treatment — but lurking under the merry facade of Mr. Bacon’s cool, calm and collected demeanor was an unhappy truth waiting to be uncovered.
When the nurses unhooked Mr. Bacon from his IVs, he got up as usual and joked as he walked across the room. But, I realized, he wasn’t leaving yet. He was going in to see his doctor, and was going to come back to the chemo room before he left. I didn’t think much of this deviation of routine and continued typing away on my computer, although it should have been my first clue for what that terrible May day had in store.
Ten or fifteen minutes later I was made aware of Mr. Bacon’s return by the nurses’ eager questioning of, “How did it go?” from across the room. My chair was in a position that put Mr. Bacon back and left of me, so I couldn’t see him without turning around, but when I saw the one nurse’s face drop, it was all I could do to stay in my chair. When I turned around, Mr. Bacon was just shaking his head, not saying a word, and four of the nurses were gravitating toward him. The one nurse said in disbelief, quite loudly, “No! You’re kidding!” I still didn’t know what was going on, what had happened, just that it couldn’t be good. Finally, Mr. Bacon said, “Nope. Not kidding.” By this point the nurses were close to him and they were speaking quietly so that it was difficult for me to hear what they were saying, but then, clear as day I heard Mr. Bacon say, “I won’t see Christmas. I won’t see Christmas,” and it was all I could do not to cry.
He was upset, of course, and I could hear it in his voice, but he spoke matter of factly and remained as calm and collected as ever.
And then he laughed.
From that point on his regular tone returned and he joked and laughed almost like normal, except this time it was about how he was going to die and that there was nothing he could do about it. He wouldn’t be coming back for treatments anymore, since they obviously weren’t working and he had better things to be spending his time doing. I heard him say, “He said I could try radiation, but, I mean….”
I wanted so badly to jump up and give him a hug, but my inhibitions were too great and by the time I plucked up the courage to do it I would have had to have picked up my chemo pole and chaseed him down the hall and into the waiting room out front. Then, as soon as it was too late, I deeply regretted not getting my ass up, interrupting their conversation and giving the man a hug.
After he was gone I asked the nurse what happened. She told me that Mr. Bacon had complained about headaches in his prechemo check up that morning and the Dr. sent him over for a PET/CT scan of the head immediately (they have their own PET/CT unit in the building next door). The radiologist brought the results to Mr. Bacon’s Dr. right away (it usually takes a couple of days), and after chemo Mr. Bacon went to talk to him about it.
As it turns out, Mr. Bacon’s cancer spread to his brain, and once it’s in there, it is near impossible to get rid of. Obviously that meant that his chemotherapy was ineffective, leaving him only with the option of radiation. The effectiveness of that treatment at the stage his cancer was at would be incredibly limited, but the effects of radiation of the brain on Mr. Bacon would have been horrible, most likely leaving him very sick and partially bed ridden for the remainder of his life.
Mr. Bacon didn’t want that.
I asked the nurses if I brought them a card for Mr. Bacon if they would address it for me and send it to him (they clearly wouldn’t have been able to give me his address). They said yes, so that night when I went to the Relay for Life at Lecanto High School, I dedicated a luminaria to Mr. Bacon in his honor and took a picture of it and the word “HOPE” spelled out in the glowing bags on the bleachers. I made him a card with these pictures and a picture of the group of us that went that night on it and sent it to him. I hope he liked it.
Every time that I have talked to some new person about cancer since May 2nd, and that person tells me that I’ll surely beat it because I have “the right attitude,” I want to tell them all about Mr. Bacon and how he has “the right attitude” and isn’t supposed to die from cancer — that he is proof that cancer does not care about its host’s attitude towards it. But I have only done this twice, because it seems that telling people a story like that when they’re trying to be hopeful and inspirational breaks something inside them, and there are only so many times that I can bear being the reason for that terrible, desperate look in someone else’s eyes.
But everyone I speak to on a regular basis knows about Mr. Bacon, and now so do you.
These past two weeks have been vividly reminiscent of the two weeks following my initial breast cancer diagnosis, except that this time I already know the motions, the procedures, the vocabulary and the doctors. It is more in the form of negotiation where I am asked what’s good for me instead of being told, talked to instead of at, and I already have a relationship with the nurses, doctors and even some of the imagining technicians. I know how to get there, where to go, what they call it (for example, the Medical Office Building is actually the MOB), the best place to park, what I need to bring, and how long I’m going to have to wait.
This time, just like last time, all of the driving, calling, meeting, discussing, scanning, picking up and waiting, waiting, waiting is taking up all my time; but this time, it is also taking up all my energy. This time the mystery, strangeness and gargantuan amount of new information has been replaced by repetition, familiarity and crystal clear understanding. The adrenalin stopped pumping a long time ago; now I’m just kind of stressed and my left eye won’t stop twitching.
Today, however, provided something new, different, interesting and quite strange. Today I got a spur of the moment operation where I not only got to stay awake and see the rather large hole cut into my breast (although I did not get to watch the procedure), but also got to handle the tissue removed and squeeze the lump literally between my fingers, outside of my breast!
When I went in to Dr. Duponts office in Lakeland, I thought Dr. Dupont was going to examine me, look at the ultrasound and mammogram films, talk to me about options for the next step and then schedule me for something either this week or next week. And she did examine me, look at the films and present options, but she also stated her discomfort with the lump and told me that she had pulled a tech from the medical procedure building across the street that could preform an ultrasound guided needle core biopsy on me today if I wanted. She told me that the lump felt dissimilar to the rest of the scar tissue in the area and that it shared characteristics of the original tumor. She said that for those reasons she believed that the biopsy would show that it was a cancerous tumor and that in that case she could recommend an excellent plastic surgeon named Paul that could preform a mastectomy with reconstruction. He is, she said, literally an artist, a sculptor, “He’s got the eye; he does beautiful work. The best. The best.”
Unfortunately, however the surgery would not be preformed for another three weeks. She said that she likes to wait for at least a month after chemotherapy is over to preform such a major surgery. This made me feel antsy. I hated the idea of leaving that thing in there for another three weeks if it proved to be more cancer. Dr. Dupont, the wonderfully perceptive woman that she is, could clearly see that I did not like the idea of waiting, and since she is as warm, caring and empathetic as she is perceptive, she understood completely.
I went into the procedure room so that Karen, the technician that Dr. Dupont brought over from across the street, could begin by trying to get a clear picture via ultrasound. Meanwhile, Dr. Dupont went out into the waiting room to let my mom know that we were going to do an ultrasound guided needle core biopsy. While she was telling my mom everything that she had told me, she told my mom that I clearly did not like the idea of having to wait a couple of weeks for a mastectomy if the biopsy came back positive for cancer, which, she told my mom, she felt it would. My mom said something about how I wished there was some way I could just “pop it out,” and Dr. Dupont, my mom told me later, kind of lit up and said, “Oh, that’s what I’ll do! I’ll be back in a few minutes.” She then came into the procedure room while Karen was ultrasounding my breast and asked if I just wanted it taken out right then and there. “Uh… Yes,” I said, uncertain of exactly what that would entail, but knowing that I didn’t want the thing in there. “Ok,” replied Dr. Dupont, “We’ll get it out of there then. Donna,” she said to her head nurse, “please prepare a cart,” then she turned to me and said, “I’m going to go let your mom know what we’ve decided to do.”
Ten minutes later Dr. Dupont came back in the room decked out in her surgery garb, just like she had been for my lumpectomy at Moffit, and explained that she was going to use local anesthesia and avoid getting blood on my pants, which she was glad weren’t white.
The anesthesia injections were rather uncomfortable… somewhat painful, actually… and she had to apply a lot of them because I have dense breast tissue, but it was probably much less painful to get the injections than it would have been to have the lump cut out without any anesthesia, so I didn’t mind. When she started sticking the needle into the many necessary areas she said, “Now this is going to hurt a bit, and that’s allowed, but if at any point after this you feel anything at all, you let me know because that’s not allowed and we’ll put an abrupt stop to that. We don’t want that. Discomfort during the procedure is strictly prohibited.”
The procedure itself was very strange. When she first started cutting into me I could kind of feel it, so she gave me more injections. Then a while later, while she was snip, snip, snipping away at the area around the lump I could feel a cutting pressure again (she went pretty deep) and I got even MORE injections. She ended up injecting four bottles of local anesthetic between the beginning and end of the procedure, at which point she injected a bottle of stronger stuff to tide me over until I got home. She also rinsed the cavity with an entire bottle of anesthetic at the end before she sewed me up. Mind you, these were NOT small bottles.
The first really weird thing was when she would make a cut with the scalpel or a snip with the scissors and I could feel the warm blood flowing down my side, and then when she would pull at something and I could feel blood oozing out, overflowing and spilling into the sterile area around me. It felt like a lot, although she had said before she started that she didn’t think there would be any crisis of blood loss and she never seemed particularly upset about the amount of blood, so I guess it wasn’t too much.
It was very strange to feel her pulling the whole time; first cutting through my skin and pulling it to the sides; then cutting through my tissues and pulling more and more to each side with each little “snip” of her little scissors; then, when she finally cut out the entire chunk that she wanted, I could feel the hole being pushed open with the little tongs to allow for a better view of the inside. I could feel her fingers inside the cavity, searching for any other abnormalities. I could feel it when she was stuffing the gauze in there to sop up the blood and then when she pulled out the drenched wads when she was ready to continue working. I could feel when she was pressing the cauterizer into me, into my tissues, trying to stop the bleeding while literally singeing me to well done on the inside… it is a very strange thing indeed to smell yourself cooking.
But it only hurt in the very beginning, before all of the cutting, pulling, burning and stitching, when she stuck the needle in me. And now. It hurts now. I’ve taken pain pills but it still hurts, probably partially because of the existent nerve damage; things tend to hurt my right side/breast/arm more than on the left side because the nerves are all still funky from surgery back in October. Also, she was cutting, pulling, burning, internally probing and stitching my boob, so that probably has something to do with it.
It was also quite strange to handle my own breast tissue. After she finished cutting and before she stated cauterizing she showed me the chunk she took out, which was surprisingly large, marked it for the lab and then, after Donna put a glove on my left hand, handed it to me. It was very cold, which surprised me, and mostly devoid of blood. After a little bit of massaging it between my fingers I could clearly feel where the lump was, which was a very, very small part of the chunk; at least we know she got good margins.
While she was probing around in my breast, after we had put the chunk of tissue into a cup with some type of liquid in it to be sent off to the lab, she said to Karen and Donna, “Huh, it looks like there’s a little blue dome cyst in there. Do you see that? I think it’s a blue dome cyst.” I suddenly envisioned the inside of my breast as a kind of aquatic cave full of beautiful, fascinating sea creatures. “I have a cyst?” I asked. “Yup. That’s what it looks like” she said, and I pictured some kind of bright, flowing sea anemone dwelling in the newly created cavity.
I couldn’t help it, and before she was finished I asked if I could see. She said yes and Donna got a mirror. Dr. Dupont had been cauterizing for a few minutes at this point and, while I was looking in the mirror, she said, “As you can see, that’s the pool of blood I’m trying to get under control. This over here,” she circled with her finger, “is normal fibroid breast tissue, and this,” she pointed, “is the cyst. You probably can’t really appreciate it right now, but it’s there.” “Yeah,” I answered, “at this point it just kind of looks like part of the landscape.” It was, after all, the first time I’d ever seen the inside of a breast. It wasn’t exactly an aquatic wonderland, but it did have some of the qualities of a cave; there were the nooks and crannies, the rocks and ledges and, of course, the pool of water… well, blood, if you want to be technical about it, but it could have just been the reflection of the cave’s red rock walls making the water look like blood.
During the entire procedure Karen, Donna and Dr. Dupont all kept me and one another engaged in conversation. I wondered a few times if that’s what it is like during surgery when the patient is under, if they talk about their pets and remodeling their kitchens and what not. Karen asked me at one point if I was still doing ok. I said yes, and she told me that she has found, as a person who had undergone a lot of serious dental work without any kind of anesthesia due to severe allergic reactions, that with pain it really does come down to mind over matter and that if you can distract yourself from what is really going on it won’t bother you as much. To be honest, though, I liked knowing what was going on and probably wouldn’t have minded watching.
Dr. Dupont felt that the area of the lump looked very much like scar tissue, and she said that she was hopeful that that’s what it would turn out to be. She told me that while the cosmetic result is going to be a little less pleasing than it was before, it is better to have the lump out of there, even if it is just scar tissue. I agreed and told her that, at this point, I prefer a type 2 error any day.
The chunk will be sent off to the lab Thursday (tomorrow) and we should have the results by Monday or Tuesday. I feel that Dr. Dupont is extremely knowledgeable and very perceptive, so I share in her hopefulness, but I am also not giving myself over to hope entirely because I don’t want to risk feeling cheated and extremely disappointed.
In any case, here’s to hoping.
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.
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, a Muga scan, 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.
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 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.
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?
There is one cool thing about chemotherapy: you get to witness your body being beat down by a foreign substance and then build itself back up again stronger and more durable than before.
However, there is this other, very uncool thing that people savvy to oncology talk call “chemo brain.” Not knowing anyone who has gone through chemotherapy, I was not fully aware of the condition and was not at all prepared for it when I began experiencing it first hand.
These two things occur simultaneously, the effects of each increasing with every treatment so that as the body becomes stronger, so does the “chemo brain.”
As I have mentioned before, and as I am sure you already knew, chemotherapy attacks all cells equally — it does not target cancer cells specifically. The effects of this are especially evident in the nausea and vomiting effect of chemo where the cells of the stomach lining are being maimed. But chemotherapy also attacks that essential organ wrapped up and stored on your shoulders.
I am convinced that I am going to have permanent brain damage.
Here’s a brief summary of the first two months of treatments I just completed:
The first treatment left my body in a poisoned haze of rebellion and discontentment; “why would you do that to me?” it seemed to scream, and tried to teach me a lesson by refusing to walk in straight lines, digest food properly or allow me to complete normal daily activities like washing dishes. I was weak and my body was dizzy all the way up to my next treatment. I could hardly even hold my niece, which made me feel terrible.
The second treatment irritated my stomach more and chased my hair away, and the poison seemed to be storing itself in my tissues for a more malicious attack down the road, but my body seemed to be thinking something to the effect of, “Alright, fine, you wanna see what I’m made of? Bring it on!” I felt better for the two days before my next treatment, which was nice, although it kind of just pissed me off.
The third treatment had me stumbling out of the Cancer and Blood Disease Center like a drunk out of a bar at closing time, and I really thought I was going to lose it on the way home. I wanted to go bury myself somewhere until it was over, but I couldn’t even sleep through it. My equilibrium was dislocated temporarily and I had this tendency to walk into things… things like walls… but my body seemed to be adjusting to the large doses of poison being administered to me bi-weekly and I not only recovered from the treatment pretty quickly, but I felt rather good.
My memory seemed to be affected, though; I couldn’t remember appointments and my word recall was noticeably diminished.
The fourth treatment made me sick at the center, despite my hard core nausea pills (there are three of them in a pack, one for the day of, one for the next day, and one for the second day after treatment and they are sold at a hefty $354/pack). I had to get additional nausea medication, administered intravenously for maximum effect, before they would continue my treatment. For the rest of that day and the next day I could barely stand, never mind walk all the way to the door to let the dog out. I have never felt so helpless and pathetic; I seriously don’t think I would have been able to stand up and wash a dish to save my life.
However, my body is amazing. It was learning how to deal with the chemo extremely well and while I was indeed knocked completely off my feet for two days, I recovered even quicker than I did from my third treatment and I almost feel normal. You probably have no idea how amazing you actually feel right now because the way you feel is normal for you, but please believe me when I tell you that chemotherapy gives you a whole new appreciation for feeling healthy, and when it occurred to me that I ought to go for a brisk walk I almost leaped out of my skin for joy that I felt good enough to want to exercise.
Unfortunately, though, my brain malfunctions have worsened. Not only can I not remember things and recall words from my vocabulary, but my ability to listen and pay attention are at an all time low.
First of all, I cannot remember my short term memory. “Hello Jim. My name is Joey. It’s nice to meet you. What did you say your name was again?” It is really quite annoying, especially for grocery shopping.
What bothers me more, however, is my inability to recall things that I know I know, like words. You know how sometimes you’ll try to think of a word but you temporarily forget it? It’s right there, hiding around a corner that you can almost see around, but you’re at just the wrong angle to get a glimpse? Well “chemo brain” is nothing like that. The word isn’t hiding anywhere – it’s simply not there. It’s not on the tip of your tongue and you have no hope that you’re going to remember the word you wanted to use – all you know is that you used to know a word that conveyed the thing you’re trying to communicate, but you can’t even remember what letter that word used to start with. There are no walls or corners or shadows, there is only a vast expanse of very well lit white where your diverse landscape used to exist, showcasing how thoroughly you’re being cleansed.
While that alone makes me feel stupid when talking to people, my inability to keep a train of thought and to pay attention to what people are saying to me makes me want to avoid social situations all together. I’ll be in the middle of a conversation with someone and they’ll be talking to me and I will just stop registering what they’re saying and zone out, and my internal monologue is going “Hey! Joey! Listen! Pay attention! What are you doing? It’s not that hard, just listen, damnit, LISTEN!” I try to force myself to focus on what the person is saying, and I’m looking at them the whole time but I cannot decipher what words they are using; all my brain registers is a kind of humming buzz. As I start to zone back in it’s like coming up out of a swimming pool and all of those muffled, jumbled sounds become discernible utterances.
By this point, however, I have completely forgotten what we were talking about in the first place, and when the person looks back at me waiting for a response, my only viable course of action is to admit that I have no idea what’s going on.
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.
