Tell Me if it Hurts

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

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 This time the mystery, strangeness and gargantuan amount of new information has been replaced by repetition, familiarity and crystal clear understanding.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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In any case, here’s to hoping.

Expedited Processing

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.

Comments on the Stages of Re-growing Hair

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?

The Rebellious Youth

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?