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Scar tissue!
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.
“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.”
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“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.”
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“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.”
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“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.
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“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.
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“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!”
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.
