Thursday, May 05, 2011

The Discovery

[I wrote the below way back on April 21st, it is about finding the lump and my first mammogram, I will post what I wrote about the biopsy in another post.]

I am bad at sharing hard things. I carry them around in my heart until they burst. I may reach out and share the surface level items. The part that isn't difficult to spread around because it is easily brushed aside as no big deal but it is hard for me to admit when something is too heavy to conceive - even to myself. I am just too damn independent. I also don't know when to share the burden. Do I share early when it is stressful to imagine all the what ifs or do I hold back until it is time to celebrate because it all turned out to be nothing? Or wait until there is something real to worry about and then disclose and ask for support? Will I be able to ask for support even then?

So here is the story of my week. I want to capture it now while I'm in the midst of it. Not because I'm freaking out or scared or even particularly worried but because I want to remember how this feels - in the middle. Not at the end. Maybe I'll share this when I know the outcome.

On Tuesday I went to my annual not-very-fun-but-necessary gynecological exam. The last months have been especially chaotic for work and this is the first week that hasn't been jam packed. Although I still have a lot on my plate for a closing next week. I went to the exam worried about a pesky yeast infection, thinking that was the worst of my concerns and mildly embarrassed to discuss it with my doctor since I've never had this sort of issue.

Soon I wasn't so worried about that and it became more of an afterthought because during the very routine breast exam she found a lump. A not so insignificant lump. A lump that once located and felt and compared with the non-lump holding right breast feels big and unmistakable and makes me wonder how I never noticed before. Except, maybe I have noticed it before and wondered and brushed it off as no big deal. But then again, how often do I really feel my own breasts? Or, for that matter, how often does ANYONE feel my breasts since I live a rather celibate lifestyle.

Anyway, my doctor is amazing. She is by far the best gyno I've had and the reason I have been seeing her for about six years and the reason half my friends see her as well. She reassured me but also instructed me to get a mammogram and ultrasound. She explained that a lump doesn't mean cancer since there are a number of other things it could be that are no big deal but we should check to be sure. That was Tuesday, April 19th.

I made an appointment with a radiation center for the next day. The location closest to my office didn't have any openings until next week but the one closer to my house did so I signed up for a lunchtime slot thinking I could just be absent from my desk for a long lunch. That turned out to be wishful thinking. I arrived at 1230 and was immediately informed my doctor had checked the wrong box on the form and they needed to call her to get the right box checked. That took a couple of calls from them and then me before the properly checked box form was faxed over. By then it was after 1 pm. It was another 30-45 minutes before my name was called so I could remove my top and change into a pink gown and sit in a second waiting room. Which was very cold. And then they kicked the air conditioning on and it became freezing. I waited and waited, half dressed, freezing and reading my book. But distracted. After chatting with another woman for a bit about the wait my name was finally called and it was my turn for my first ever mammogram.

My technician was an older Russian woman with a thick accent. In the small room with the machine whirring it was difficult to hear and understand her as she quickly repeated what I assume was her usual speech. I asked her to repeat herself several times to make sure I was hearing her hurried instructions correctly. Within moments she was sizing up my breasts, strapping a lead apron around my waist and putting pink floral band-aid strips with rhinestone-like beads in the middle over my nipples and asking me to point out the lump. She felt around a bit and I questioned whether it was really there and then she marked it with another pink strip before instructing me on how to cozy up to the giant machine. She moved the shelf up and down and manipulated my breasts into just the right spot to be pressed like a panini sandwich between the plastic plates. I held my breath and squeezed my eyes shut while she told me to hold still as she moved behind the small wall to take the xray before returning to re-situate me with the machine. The side views were especially difficult and she had to tell me several times to loosen my grip on the handle she told me to hold. I thought it was there for squeezing but apparently only for positioning. Oh, well. The last position to get a good view of my lump was especially contorted and gave me a good view as my left boob was squished so flat I feared it may never plump back out to its normal size. I held my breath and once again squeezed my eyes shut and tried not to death grip the machine as she took one last xray.

Then I was dismissed back to the dreaded waiting room to wait for my next test.

For the most part the other women in the waiting area with their matching pink gowns and varied pants, skirts and shoes exposed on the bottom half were significantly older than me. They all seemed impatient or nervous or cold to varying degrees. Some were prepared with scarves or took the nurses' suggestion of utilizing the blankets scattered around the room. As new women came in, you could see the bewilderment of the novices as they were given instruction to strip up the top half of their clothing and don the pink gown with the gaping arm holes. Those who seemed more accustomed to the process bee-lined for their favored changing room and appeared prepped for the long wait. Others asked questions and took the wipes as they were instructed to remove deodorant (I read the sheet and hadn't worn any after reminding myself over and over not to put it on in the morning). One blind hispanic woman held onto the arm of her daughter/friend/relative/caretaker and was read to as she waited. She was the most careless with her gown and tied it loosely or not at all when she returned to the waiting room, her breasts covered but clearly drooping with her age.

One be-gowned woman was still in the waiting area after her procedures when a startled nurse/technician informed her she was all clear and free to leave. Startled, she responded that she wasn't used to that news and grabbed a tissue. She rushed out the door momentarily in confusion as my own eyes teared up assuming she was a cancer survivor before she hurried back, remembering the need to change back into her street clothes. She was still composing herself when she emerged from the changing room and I wanted to say congratulations but with the room so silent I just smiled with tears glistening in my eyes.

There was one woman significantly younger than me who I first saw in the initial waiting room with a friend. I overheard a piece of their conversation where one remarked to the other "how does it feel to be 20?" Clearly, the patient was not yet out of her teens. Later, I saw a woman who was my age or younger who seemed well prepared for the cold and accustomed to the place with her large shawl. I wondered about their stories. Is this new to you? Is this routine? Do you have a diagnosis or are you, like me, maintaining an outward appearance of calm and no-big-deal, just another appointment while internally your mind considers what cancer might mean to your life, your plans. Are others contemplating who and when they might tell people. Are they drafting an email in their heads of how to ask for prayers/support/love/thoughts and rejecting pity if the C word is ever used? Are they scared? Am I scared? Should I be scared? Is there a part of me that almost nearly, not really craves the diagnosis? Why would I ever want that? Even though I don't actually want it, why am I so curious about it?

I continued to read and selected a seat further away from the blast of cold air.

I was soon called back a second time by another Eastern European sounding accented technician for my ultrasound. I was instructed to lie down in the most awkward way on the table, half on my back, half on my side so she could get a good view of my left breast - my left arm draped over my head. This was fine initially but as the technician took more and more views and the scan went on, I fidgeted and longed to ask to just put my arm somewhere else. When she first squirted the gel stuff onto my breast I was surprised how it felt. When I had an echocardiogram years ago it was cold, this time I almost didn't feel it, it was warm. I was again asked to point out my lump since the pink strip marking its spot had vanished although my rhinestone nipple pasties were still in tact. Too bad I didn't have anyone waiting at home because how funny would that be as a post-mammogram surprise? Anyway, I strained to watch the screen as she moved the wand around and around my left breast, ignoring the right completely. I watched her concentrate on a menacing looking black blob but didn't ask her anything since my past experience with technicians from my echo is the only information they will give you will likely be wrong.

A knock came on the door and the radiologist asked to come in with a resident - the only male I encountered at the center. In a whirl of confusion they started discussing biopsies and measuring the black blobs and distance and she instructed the technician to search the lymph nodes in my arm pit and what do you know, there is another small black blob to be measured and recorded and viewed in color and without. I squirmed and the doctor asked if I had any questions. I said "a ton!" and she said she may be able to answer a few and paused, "is this your first time?" she asked and when I said yes she responded "of course, you are only 35." She made some comment about not being god for which I forget the context and told me they would assist me in scheduling the biopsy right away and asked if I had a breast surgeon. Um, no. Why would I have a breast surgeon? Should I have a breast surgeon? What the hell are you seeing and what do you know here? My questions were more simple and basic and I was outwardly calm and mostly focused on being allowed to put that left arm down so I didn't ask much else but I also did not care about my boob hanging out for the small audience. The doctor instructed the technician on what else to do and apologized for interrupting and informed me that they would walk me through all of the next steps afterwards.

I wondered if she came in because of what she saw on my mammogram. She clearly knew what was there before she barged in. She seemed concerned but was that her usual manner? Did she treat all lumps the same? Should I be worried? So many questions. And what is all this about a breast surgeon? Is that what they are really called? Am I being hurried along some crazy path towards surgery?

I needed a moment.

I was soon given one.

I was told I could wipe off the excessive amount of gel from my breast and arm pit and return to the waiting area and change out of the gown and someone named Melinda would collect me and make all the necessary appointments.

This time, feeling odd fully dressed among the pink-gowned women, I waited without reading. I was nervous. I pushed the rising panic down by texting my mom that I would be calling shortly. I also emailed a friend who is an oncology pharmacist to see if he could get a referral for any breast surgeons in NYC. I didn't say it was for me and he kindly didn't ask why when he responded later that afternoon. I'm sure he has questions and if this turns out to be something, I will definitely have questions for him. Perhaps too many.

I sat and waited. Watching the mostly familiar faces of the other women who I'd spent the afternoon with wondering if they could tell I was different now. Not just because I was in my regular clothes but perhaps because my face revealed my inner turmoil. I played some words with friends on my phone and the freak out stage passed. Nothing to worry about right now. Just more tests to endure.

And more waiting.

The woman named Melinda who was the only person I had seen not in hospital garb mangled my name and I stood up and followed her through the maze of hallways to a tiny little office. I noted her title of "breast imaging coordinator" and wondered what type of credentials were behind that title. She answered some questions and confirmed that yes, there are three lumps and scheduled my biopsy for Friday morning. Good, only one day to wait. She instructed me not to go to work afterward and was soon on the phone with a breast surgeon making an appointment for the following week. I waited. When she discovered her favored surgeon did not take my insurance she asked if I wanted to go out-of-network. I declined. For a consultation for what could be absolutely nothing, no, I will stay in my network thank you very much. She made an appointment with a second surgeon in the same office who she reassured me was also excellent but told me he isn't as deliberate with his patients as the first doctor and will answer all questions but just doesn't take as much time to explain things. Hmmm, that could be good or bad I guess. But I made the appointment for the following Friday already dreading the week long wait between biopsy and results.

And then I was set free. I walked back to work first talking to my dad, then my mom. I worked late to make up for the fact that I returned to the office at 4 and ate my lunch at my desk as I continued my conversation with my mom behind closed doors. I spent another hour reading about biopsies online preparing myself for Friday and consoled myself with the happy statistic that only 20% of biopsy tests return positive for cancer. I have an 80% chance of a benign result. Excellent.

Since Friday is Good Friday and notoriously empty in my office, I don't feel my absence will stand out since the office will likely be pretty quiet. It already is today. It has been difficult to work. I am just distracted wanting to know is it or isn't it? Once I know, I feel I can move on either fighting it or shrugging it off as a precautionary lesson. I still haven't spoken with my doctor about the results although I called this morning. I haven't eaten lunch and didn't have an actual breakfast. I could not peel myself out of bed this morning and wanted to stay there all day. I assume this is my stress poking out of my psyche. My mom is worried about me going to the biopsy alone but honestly, I think I would be more stressed and worked up if I had someone there with me. The clinic is two blocks from my apartment and although one online thing I read indicated some people get a valium, I assume I will only have local numbing for the needles. I won't go to work but will likely indulge in some couch time for the afternoon.

I waffle back and forth between wishing I had weekend plans and looking forward to a quiet weekend to clean my house and read and relax. Friends would be a distraction but I fear I will unburden myself and talk about it more than necessary if I'm around anyone. I have brunch plans Sunday but otherwise nothing. I just need to make it through another week and then I will definitely know which path I'm heading down.

It seems strange but I think I will be most upset if I cant' run my half marathon in June. I told Erin this last night and she said she will run anyway. I feel like either way I will go to Seattle and run or walk or crawl. If the result is cancer I will be fighting.


Tiffany said...

I'm so glad you're writing.

Kelly S. said...

I've never officially met you, but in a way, I feel I know you, a little. I used to live across the street from Tiffany before she up and left for the east coast and have been following your blog since she mentioned it on hers. (I was so sad when you went private! But I'm glad your back) First - I saw you mentioned The Middle Place. Loved that book! I was going to recmnd it, but I see you already read it. Second - You are STUNNING with short hair. After chemo has kicked cancers ass I think you should keep it short. You are a looker! Third - Even though you don't really know me, I wish you all the luck and health in the world. You are a beautiful writer and there are too few of those around. We shall have you for years and years to come!

hovergirl said...

wow, it takes a lot to get this blog started back up! I could not run the race for the cure this morning but my heart and my donation were there in spirit. Remember the old ladies at the mall; we've got a long ways to go together.

Brittany said...

aloha! you don't know me at all! and i don't know you! i'm a fan/freak/stalker of Tiffany's blog, and when i saw your story, i just had to come say hi.

AND that my very best friend on earth was diagnosed with The B.C. when she was 37... she just celebrated 6 full years cancer-free in February!

We fought it with laughter, along with everything else. We joked about the cancer, as if it was a living, breathing enemy in the room. We had names for it, and I called her- yes, my friend- Cancer Victim for a while (which other people didn't get...), then about halfway thru her fight, I started calling her Cancer Vixen.

Anyway, I won't bore you with my details... I just wanted to say you can win this fight, and there are people you don't even know who pray for you and your sisters in the fight. My grandma beat the BC too, years ago. I have faith in you strong women, in medicine, and in the support and prayers of all those around you ;)

lizzie said...

beautiful. i felt like i was there with you...

michele said...

i'm glad you're back writing too! your hair looks great! sometimes i wish i was brave enough to chop mine off, but i think my head's too round.

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