April 21, 2011 (wee hours of the morning of April 22)
It is no secret that I love memoirs. There is something so intimate about reading personal stories written by regular people who experience difficult things. It is inspiring.
A year or so ago, I’m not sure exactly when, I picked up a book called The Middle Place, probably at an airport but maybe during one of those rare times I allow myself to stop in Borders at Columbus Circle on my way home from work or while I’m running errands on the weekend. I don’t allow myself to stop in regularly because my apartment is already full to the brim with books and I find it difficult to walk in without buying a book or two. But back to this particular book. It was open and relatable and a super fast read. Tomorrow I am getting a biopsy on my left breast and I cannot sleep. A particular passage in this book kept flashing into my head. I remembered how much it jumped off the page at me and how right now, as I am waiting to find out if this is anything to worry about or not, I can once again relate to the author – Kelly Corrigan and her words. In my restlessness, my bed was no longer comfortable and my legs are achy for no reason and I keep having a small, non-painful, just inexplicable muscle spasm in that fleshy spot near my armpit, the spot I thought was my muscle when I was a little girl. It is on the right side and has been spasming off and on throughout the evening. Anyway, I got out of bed and knew exactly which bookshelf held the book even though I couldn’t remember the name – but there it was, waiting for me. I opened it up, curious to skim the beginning chapters to see if her whirlwind lump to biopsy story had any parallels. It does.
Except my reaction is more calm. I’m not emotional. I haven’t cried. I’ve questioned the lack of crying but haven’t really felt it. Mostly I have been distracted wanting to just get on with it one way or the other as I go over the possibilities in my head. Which brings me to the other feeling I’ve been questioning over the last couple of days. The feeling Corrigan captures so well in a passage I actually underlined when I initially read the book:
“A sick part of me actually wants the bad diagnosis, if only to prove that I know my body, that I am not a hypochondriac looking for unwarranted attention. . . . I almost want the lump to be a tumor so he sees that sometimes fears are justified. But it’s more than that.The part I related to so well then and now is the “I want to know what it would be like. I want to know how I would perform.” I told my mother today after I repeated the answers I received from my doctor (or I should say, the doctor who called me back from my doctor’s office) and told her about all of the information I had gulped down after googling and clicking and linking that I felt prepared. I am armed for the worst. I don’t want it to come but there is this little inkling of a voice in the back of my mind that is chanting “Bring it on, I will kick ass!”
“I want to know what it would be like. I want to know how I would perform. I remember a Poe story I read in college, ‘The Imp of the Perverse,’ about this elemental, radical impulse people have. In the story, a man stares into an abyss from the edge of a cliff. At first, he is dizzy with horror. He shrinks back. But eventually, he is consumed with the idea of falling, even jumping, just to feel the rush of the plunge.
“Nothing bad has ever happened to me. No disease, no disorders, not even a broken bone. What would it feel like.”
Maybe it is the adrenaline, thrill seeking, competetitive side of me that wants to prove that I can beat something as big and scary as cancer and I can do it on my own. Why is that? I know relief would be the first sensation if the mass/lump/tumor whatever you want to call it is benign but there is another feeling I have an inkling of for which I cannot think of an adequate word. It certainly isn’t disappointment but there is an element of that let down to it. I am a soldier ready for action – locked and loaded, armed with questions for the breast surgeon, knowledge of my insurance options and work disability policies and procedures. If I researched all of this for nothing . . . then what? I just go about my business as if this lump never appeared?
80% of lumps are nothing. It is highly unlikely that I will be among the 20% to move on to the consultation of how to treat cancer – surgery, chemotherapy, hormone treatment. But if that is the outcome, I am ready.
I have drafted emails to friends in my head. Questioned who to tell and when to tell. Do I tell friends now while I’m in the scary anticipation phase? Even though I’m not emotional or upset, just distracted? Do I send one big mass email begging for everyone to think of me because my day to day life is truly lonely? Do I secretly want the worst to happen to test this network of people I have built up around me because part of me thinks they will fail and all I will have is my mom flying back and forth?
If it happens I feel I will want dinner parties and brunches and long phone calls for support. Will I get that?
Will my family urge me (beg me/guilt me) to return to church? I suppose I have my own kind of faith. The kind that doesn’t think of death – just inevitability of fate. I either have a malignant tumor in my breast or I don’t. Simple. Nothing I do at this point can change that fact. Will going to church, prayer, fasting by myself or others bring me comfort? Perhaps to some degree. I don’t know but what I do know is the knowledge that others are doing that for me would buoy me up somehow and that is what I think faith is about.
It is after 3 am and I really need to try and sleep. I have to be at the radiation center by 830 tomorrow for my 9 am poking. I will be thinking about Corrigan’s description of her biopsy: “for forty minutes, a nervous young doctor jams something that looks like a sixteen-inch harpoon into different parts of my breast while a cheery nurse guides her via sonogram.” Something to look forward to.
I am comforted to know that I reached outside my family and told a couple of friends about the biopsy. We are having dinner on Monday night and I knew I would be distracted by the waiting so I needed them to know. Plus, if the results are bad I need someone to go to the appointment with the breast surgeon with me next week. Both immediately sent reassuring emails. Joo will go with me if I give her some warning on timing. Michelle is traveling for work but offered to reschedule if I needed her. She also offered to talk. So I called her at the office at 8 pm while I sat in my office trying to finish the most essential of my neglected work to-dos. She is going home for Easter tomorrow but offered up her boyfriend and his lovely house up-state as a refuge this weekend.
I don’t think I will take Michelle up on her offer but I appreciate it immensely and hope for more offers to come. This weekend I will relax. Maybe work. Definitely clean my apartment. Maybe go running. If my boobs aren’t too bruised. Possibly attend a running expo and definitely have brunch Sunday with my friend Brooke. Maybe tell her about the tests.
I’m impatient and the last three days from lump detection to sleeplessness has dragged out far too long. I can only imagine how slowly next week will crawl along waiting for the biopsy results. I’m told my doctor will tell me as soon as she receives the pathology report, I don’t have to wait for the appointment Friday afternoon with the breast surgeon, that’s for sure. Unless the results aren’t in before then. Argh. One step at a time.
April 23, 2011
I should write about the biopsy instead of lying around on my couch emptying my dvr and avoiding showering because I don’t want to figure out how to saran wrap my bandage and still have an enjoyable shower. I’m also avoiding laundry. And wishing I could go running. Even if it is rainy and cold. My post-biopsy instructions said to avoid strenuous activities for 24 hours. It has been over 24 hours now, does that mean I can run? Even though yesterday walking caused more movement than I cared for even with a sports bra. A nice tight one. I didn’t realize my Bs moved that much while walking. I guess I’m learning a lot of new things.
I’ll back up.
After Thursday night’s insomnia, I managed to snooze past my alarm(s) and woke up at 750 am. I was scheduled to arrive at the radiation center at 830 am. Always a terrible feeling. I knew I couldn’t face the whole process without a good shower so I sped through my routine in record time – I even shaved and blew my hair dry – and was out the door at 820 am. I collected a banana from the gym downstairs and walked up the big one block hill to the center. Luckily it is close. I checked in at 831 am.
There really was no reason to rush. And I knew that all along. I was scheduled for my biopsy at 9 am and the paperwork took less than five minutes despite the 30 minutes they allotted to the task. I mean, it was one page requesting the same insurance information I provided on Wednesday that is already in their system. Oh, right, they announced shortly after I sat down that their system was down. Whatever that meant.
I read calmly for an hour or so with headphones playing soothing music. I ate my banana. I went to the bathroom. I drank some water. I couldn’t go back to reading. Close to 10 I was told they were finishing prepping the room. I waited some more. With headphones firmly in my ear, I leaned my head back on the wall and suddenly felt this was a scene from the movie of my life. One of those intense moments of stillness where the audience already knows what is coming based on the chords but there I sit with my eyes closed leaning my head against the wall. I felt over dramatic with that small gesture so I sat up straight and fiddled with my phone. Then my nervous bladder insisted I pee again since I had finished my bottle of water.
Waiting is the worst part.
When I returned from the bathroom a second time, the technician, Marina (the same one who performed my ultrasound on Wednesday) was waiting for me at the front desk claiming she had been looking for me. I wanted to respond that I had been waiting for her more than an hour and she could not have been looking for more than 90 seconds . . .
I tried to pay attention to the time but now, only a day later, I can’t remember what time I finally went back to the room. You see, I had to change and then wait some more. My only short wait was in the freezing secondary waiting room with all of the other pink robe clad women.
But there was still plenty of waiting left for me. Marina showed me my mammograms on the lightbox on the wall. She pointed out the larger lump from my left breast and told me it was close to 4 cm. Then she showed me the very small swelling in my lymph node under my arm pit and finally the 3 cm lump just behind my nipple. She reassured me that the doctor was excellent and showed me the tiny “clip” he would be inserting into the larger lump when he finished the core biopsy. I had read about clips being inserted but hadn’t expected it in my case. In my head I envisioned a paperclip for some reason. But this thing was a teeny-tiny s taped to a piece of paper inside the cupboard door at the end of a checklist of items to review with the patient – me.
The room was cold. I asked Marina questions and she gave me a blanket to cover the still clothed bottom half of me but it still helped as I lay shivering a bit both from the cold and nerves on the table, my left breast exposed, my right half covered by my pink robe and one of those paper coverings doctor’s always have over my right side.
Except the paper wasn’t there quite yet. The doctor took a while to arrive so I had more waiting.
I forget his name. I think it starts with a W . . . He was efficient and to the point. He answered questions and repeated answers Marina had already given me. Yes, he would be performing two fine needle aspirations for the smaller masses and a core vacuum for the larger one, that would come last. He was kind but not overly warm. That works for me.
I think it was 11 am by the time we actually got started. I think. It could have been earlier, but not by much.
Marina had laid out the wrong needles for him and he asked for the correct ones. She seemed a little embarrassed and nervous with him. But it didn’t affect me or the procedure. He had me turn onto my right side – but only partially – and bolstered my back. He had me put my left arm over my head and this is probably when that paper was draped over me. Marina operated the ultrasound machine while I watched the monitor I was facing with the doctor at my back. Taped to the side of the monitor was a list of 100 stress relievers. I read most of them before anything actually started.
I intended to watch everything. Ask questions, participate. Initially, that plan worked.
First, Dr. W did an ultrasound to locate the bulge or swelling or whatever you want to call it in the lymph node in my arm pit. The gel felt colder than the last time I had an ultra sound on Wednesday. I watched the monitor. He then cleaned everything off with alcohol and I got really chilly. I was a little embarrassed to know my nipple was a giant goose bump out in the open for viewing. But that passed quickly. The next step was a topical anesthetic of some sort, then a short prick indicating the first of many needles to come had injected anesthetic to start the first FNA.
The first “harpooning” expedition was under way. It was a little uncomfortable, like a prolonged pinching displaced from where I thought it should be. But I really couldn’t see where the needles were. I watched the monitor as the Doctor explained yes, that was the needle making its way towards the black blob. Fascinating that he could locate it that way. Once the needle made contact with the blob, it got more uncomfortable because he had to rock it back and forth a bit to collect the tissue he needed (and by it, yes I do mean my breast).
After extracting the needle I was able to put my arm – which had started tingling either from its overhead position or the anesthetic – down and rest for a minute. He and Marina were at the small counter looking at the sample he had extracted. After inspecting it, he said he would need to do one more.
The second one I didn’t feel the pinching and the wiggling around of the needle for the cells was not uncomfortable at all. He deemed this second collection a success and returned to do another FNA on the tiny lump. Again, he first looked at it with the ultrasound, then cleaned the gel off with alcohol and then a surface swipe to help with the pinch of the needle, talking me through each step. The first shot hurt more than the prior anesthetic because this one was inserted close to the nipple – “a sensitive area” he remarked. Um, yes, I'm well aware.
He gave the anesthetic a little more time to sink in this time and when he stuck the long FNA needle in, I really didn’t feel much at all. I think this one only took once. I was getting the hang of it. Not a problem, two down one to go.
I was feeling tough and like a good patient. Holding still, not interrupting the doctor by fidgeting or even breathing too deeply which I saw bounced the image around on the ultrasound a lot. I didn’t refrain from breathing, I just stayed steady.
Then it was time for the core biopsy. I read a lot about it and Dr W explained it once more. I thought all would be fine. Same routine – alcohol swipe, anesthetic swipe, shot to deaden everything else under the surface. I was facing away but when the Dr told me he was making a small slit for the needle (a needle too big to squeeze in on its own I guess), I didn’t feel anything. I had no idea what was happening on the left side of my breast. Nothing to worry about, just needed a larger opening for this needle that would be scooping a larger sample from the bigger lump. The one that gave everything away by its size to my doctor on Tuesday. The one no one was telling me might be a cyst. No one ever mentioned cyst.
As I waited for the next instruction, the doctor explained he had inserted the needle, which would stay there for each extraction. I think I could feel a slight pulling or pinch or heaviness there or maybe I was just remembering how it feels to have a needle in place for an IV, where it just sits there in the vein while nurses plug this and that into it.
As explained in one of the many explanations I’ve encountered online: “A core needle biopsy is a percutaneous ('through the skin') procedure that involves removing small samples of breast tissue using a hollow 'core' needle.” I also read this: “Patients may experience a slight pressure during core needle biopsy but should not experience any significant pain. As tissue samples are taken, clicks may be heard from the needle and sampling instrument.”
The doctor fired the “sampling instrument” before beginning so I would know what the supposed “clicks” sounded like. I would never describe it as a click, the sound is more akin to a kid’s cap gun – a distinct SNAP! that signified some effort was being made to pull the trigger.
Also, it wasn’t slight pressure.
I was so unprepared for what happened next.
The doctor said “go” or “fire” or “now” or something that in my head I remember only as “fire” each time he pulled the trigger or whatever it was he did to shoot excruciating pain into my chest. I gasped and possibly jumped. Or some other strong reaction, I don't know. He knew it hurt. I didn’t cry. I haven’t cried all week. I started taking deep, controlled breaths to get through it as I wiggled my toes. For some reason concentrating on flexing my toes up and down, up and down, still enclad in my laceless converse helped. The doctor apologized. I squeezed my eyes shut to breathe through the pain. It was terrible.
He warned me for the next one, the same as the first and apologized in such a sincere way I knew he hated doing it. No tears, just breathing.
Where is my happy place? A beach? I couldn’t envision anything but a trite desert island scene with a palm tree. The next thing that sprung into my head was the top of Half Dome in Yosemite last summer. A cool breeze, the thrill of reaching the top, the spectacular view, new friends surrounding me. Triumph. I concentrated on that image. Breathed, wiggled my toes and wished myself to the top of Half Dome.
I don’t know how many extractions were done. After the first two terrible pops the doctor stopped and gave me another shot and waited. He explained that patients react very differently. Some feel it far more than others. Some don’t feel anything. Oh to be one of those patients. We waited for the second dose to sink in and he apologized that he had to keep going. I think there were several more but my eyes were squeezed shut, my toes were wiggling and I was concentrating on my breathing and envisioning Half Dome and that cool breeze. When it was all over, I was terribly sore. I asked how many he did and he said three. That didn’t seem right at all. I could have sworn there were more pops.
After the other needles came out, they had asked me to hold the gauze over the spot where the needle was extracted. As I tried to reach for it, the doctor told me to just relax. They swiftly moved everything away and pressed gauze onto the spot where the fat needle had been and pushed really hard. I remember at some point, either during the biopsy or during this phase where they were cleaning me up, Marina was reaching across my body to hold something or other for the doctor and her arm rested on my right arm. It was reassuring somehow.
While the doctor fiddled with the sample and Marina cleaned me up I turned flat onto my back, dazed. The doctor asked if I wanted to see the sample since I seemed curious about all the details and I said yes. He showed me one of those little medical cups that you also see for urine samples, only smaller. It was clear plastic with a label on top of the ridged-side lid and floating in what I presume was my blood was a worm-like piece of my tissue. A sampling of that terrible thing growing in my breast that could be growing and taking over.
This may have been my first look at cancer.
It looked foreign floating there in my blood. Or was it just some red liquid?
I had read that if there was no blood then they didn’t need to test it, that meant it was just a cyst. Again, no one was mentioning cysts and no one was saying anything about not sending it to the lab. It was all going. All my samples were being sent off to be studied.
Marina was putting pressure on my breast to stop the bleeding. I did this for a little while as they cleaned up but apparently I wasn’t pressing hard enough because she seemed to be shoving everything from the left to the right. Doesn’t she know how much it hurts to push on a bruise? I was certain my breast would soon be black and blue.
The doctor asked if I had any questions. I asked about when to expect results and if everything would be sent to both my referring physician and the breast surgeon I was seeing next Friday. He said yes but advised me to call and confirm. He said yes, if the results were in before Friday, my doctor would call me. Then I asked a big question.
“If the results are negative, can I cancel Friday’s appointment?”
Dr. W paused, turned to look at me with Marina pushing on my breast.
That pause felt significant.
He spoke “The large one is” another dramatic pause “concerning.” I think he gestured to the xray of it still on the light box.
I couldn’t respond.
I don’t think we said anything else. We had been talking about kidney stones for some reason while he was cleaning everything up because I was telling him I had a high tolerance for pain but that core needle thing kicked my butt. He told me it was a “battle story” like he knew how much I like to turn hard things into mile markers.
We had been chit chatting but after “concerning” hung in the air I couldn’t say anything. I didn’t want to know more, especially since I assumed it was speculation without lab reports. But I also felt he knew. He knows. He has seen a lot of lumps and mine is concerning.
I was then given the terrible news that the next step was a mammogram. My breast hurt just sitting there and was worse with someone pressing on it and now you want to squeeze it in a vice? That was too much.
I almost cried.
Marina explained I wasn’t bleeding anymore but I needed to keep pressure on it while she went to arrange the mammogram so it didn’t start bleeding again.
Left alone I fought off the swell of panic. The what-ifs were starting. Principally, I thought, this could be the easiest step. This pain I have right now could be just the beginning. Something I look back on as minor. I could be opening the door to so much worse right now.
Marina came back and removed the gauze and taped me up. At some point she handed the samples all off to someone and whispered instructions I couldn’t hear. I wanted to ask what she was saying. Was she telling them it was a rush because that large lump is so “concerning”? Was there something else in there no one was willing to tell me about yet? Why whisper? Those samples came from me, I should know.
But I didn’t want to know right then. I was overwhelmed already.
After I was taped up with some steri-strips and left alone again, I couldn’t just sit with my thoughts so I retrieved my phone and before I had a chance to look at anything, Marina was back with the mammogram technician. I was dreading this part.
I struggled to get my purse off the hook on the back of the door as it was tangled with a hangar. Finally the hangar clattered to the floor and Marina told me to leave it as I was shuttled across the hall. I just couldn’t face the idea of any more pain and the technician explained again that the mammogram was just to ensure that the clip was in properly and she would squeeze as little as possible.
She could see the terror in my eyes.
I imagined that I could feel that tiny little s somewhere in my chest.
I opened my gown again and she wrapped the lead apron around my waist, warning me it was cold. She positioned me at the scary machine and I tried to keep myself calm and collected.
The first one was facing the machine and she did as promised, only barely squeezing my breast. Not as bad as I feared. It wasn’t even as bad as Marina’s two-handed pressure. One more side view and I was done.
I was told to wait to confirm the films came out okay. I walked through the long hallways to wait in line at the bathroom while someone stayed in there far too long. The place is being renovated so the main bathroom is closed and the one I used earlier was back in the other direction through several labrynth-like hallways in the main hall by the elevator where I doubt they want women in pink robes wandering. This was a single unisex bathroom next to the main radiology waiting room where patients weren’t just waiting to find out if that lump is breast cancer. No pink robes here.
I heard the toilet flush, the sink run, the hand dryer blow, then Lysol being sprayed. All of this was then repeated. I expected someone to come out with a child but a sole woman emerged. She apologized for taking so long and was embarrassed to come out to a line waiting.
She wasn’t wearing a limp pink robe with a pale, pain-stricken face.
She wasn’t thinking about cancer.
Neither was the man playing scrabble on his ipad as he waited against the wall next to me. I wanted to suggest a word that jumped out of his letters at me but I refrained and just confirmed that yes, I was waiting for the rest room. He was in street clothes. I think it was awkward for him to stand there next to me, clearly in pain, not overly concerned with cinching up my robe.
Back in the cold pink-robe waiting room I didn’t wait too long for the technician to tell me my mammogram was fine and I could leave.
Was I imagining the looks from people?
Was I being dramatic?
I looked in the mirror as I changed into the sports bra they recommended I bring with me. I was worried it would hurt. I worried everything would continue to hurt. I inspected the gauze, the nipple covering they gave me for the mammogram (purple this time) and noted the swelling. I was lopsided already.
Maybe this is just the beginning I thought again.
I hurried out the door to the street. Then slowed realizing movement hurt. I called my mom as I walked the half-block to Duane Reade to purchase some Tylenol and M&Ms. I described it all. The pain, the “concerning” comment. The waiting period.
Could be as early as Wednesday but not likely before Thursday or Friday.
Thursday I have a closing.
I talked to my Mom on the walk down the hill in the unseasonably cool air tucked under a hat and sunglasses oblivious to people around me who may be startled to hear biopsy, breasts, boobs, needles, cancer all intertwined in a conversation on the street.
At home I considered ordering food since it was right around noon. I wasn’t hungry.
I called my dad. Took some Tylenol and put an icepack on my chest and was relieved to discover it helped with the pain.
I watched some trashy reality tv waiting for me on my dvr and forced myself to keep my eyes open long enough to last through 30 minutes of icing.
I was asleep by 1 and didn’t stir until 4 pm.
I talked to my mom again and finally ordered food. Thai food, my comfort food.
Around 5, I responded to texts from Brooke and ultimately agreed to see a movie with her. I was still sore but figured I could get ice and discreetly tuck it under my sweater as needed during the movie.
We met at La Pain Quotidien pre-show and I told her about the biopsy. And we caught up on other things. It was nice to not be so single-minded. This thing has taken over my every thought and action all week. It is hard to think of anything else. All other matters seem unimportant and waiting seems to require my complete attention.
After the movie I came home and before I was too far into my DVR reservoir, I received a call from my dad’s sister. She is currently in radiation treatment and was diagnosed with breast cancer late last year. It was good to talk to her. She is strong. She takes action and she is upbeat. She gave me perspective. We talked for about an hour and I hung up emboldened. But also more convinced that the worst is just there, on the horizon waiting for me.
Another round of calls to my mom, my sister and my brother who was up late working, facing a long night of working. He was quiet and serious. He thanked me for telling him but I questioned whether it was the right thing. I could have spared him this.
I made a list of who I would tell if it is bad news. I quickly amassed a list of 40 and looking at it now, I know there are missing people. People who will support me and love me and pray for me and just be there.
I feel right now I am preparing for battle. Gathering my armor, itemizing my resources, counting my troops.
I want to run a half-marathon with Erin in Seattle in June.
I want to run the Red Rock Relay team I am co-captaining with Amanda in September.
I want to go on my Patagonia vacation.
I want to enjoy my summer.
I want to find someone to love me.
I want to retain the hope of having children.
I want to keep my breasts.
I don’t want to spend the next year with cancer.
But if I do. . . .
I will FIGHT.
I will ask for help.
I will still work.
I will reach out to friends.
I won’t push people away.
I will remain as active as I am allowed.
I will go to Patagonia.
I will throw a party when it is over.
I will shave my head if I have to lose my hair.
I will not be defeated.
I will keep a warrior’s attitude.
This will be a battle story.
I have endured hard things. I can get through this.