the whole story part 1

March 24, 2016

((the words haven’t come as they normally do, yet i am determined to press ahead and grab for the words because i think the telling of this is needful and it’s time …))

it was last fall … early november, perhaps, and i noticed firm swollen lumps in my left armpit. we’d battled a little bug around that time so i assumed it was related to that, some lingering of an infection. a few weeks passed and the hard firm mass wasn’t budging, so i texted a dear girlfriend who is a local md. we texted about related symptoms and surmised it was likely a function of years of nursing – perhaps mastitis or something similar. i remember the day we shared these texts – it was a sunny fall day, sunday of thanksgiving weekend, and the boys and i met my mom at hawthorne park to play. my friend and i agreed it made sense to see a doctor to check it out.

i don’t have a regular local doctor that i see other than my ob/gyn for having babies 🙂 but i have been to a local clinic rarely for an infection or some urgent illness. i made an appt to see a female general practitioner on friday, dec 4. she did a very thorough exam of both breasts, noting that my right breast seemed more dense than the left. there was nothing unusual or concerning in the appearance of either breast. she said she doubted the lumps i felt in my left armpit were even lymph nodes, more likely a milk duct. she gave me the option of having an ultrasound of the lumps “if it would make you feel better” or just coming back in 6 weeks.

i opted for the ultrasound.

december 15th came with the excitement of my hubby’s arrival home from a quick trip to portland. we took maddie to school and came home, excitedly getting dressed and ready to go to the airport to get daddy. the boys love this adventure, and so do i 🙂 his flight arrived around 10:30 and there were big hugs! as we drove out of the aiport, i told hubby that we first needed to head to my ulrasound appointment – likely a quick detour before moving onto something fun like lunch out together.

My guys dropped me off and i waited and was quickly called back for the ultrasound. the technician was tall, with curly blond hair and a warm, professional manner. i lay back and followed her direction to lift my left arm.there was small talk and quiet, and then the details become blurry for me. i know that she left and returned to say that the radiologist wanted me to get a mammogram.these are offered on site, but i’d never had one before – been waiting to be completely finished nursing, and had just turned 40. i agreed to have one that day.

i was sent to another room and then in to the mammography room, with a very friendly gal who made it far less stressful than it could have been.

my next memory of this horrific day is of sitting in one of the tiny cubicles, waiting, alone.

being told that the radiologist wanted another ultrasound.

and then another mammogram.

i sent panicked texts to my hubby and 2 girlfriends. all offered to come join me so i wouldn’t be alone. i felt like i was going to be sick; the panic was intensifying with each passing minute and each added test. my world was spinning.

finally, the ultrasound tech said that the radiologist wanted to talk with me. she walked me back to an office – a big room – with computer screens open and his words, “your case is a complicated one.”

i remember answering, “i don’t want to be complicated.”

i didn’t want this nightmare that was unfolding before me. i wanted to rewind time, to join my guys, to go out to lunch, to have NORMAL.

i asked to record what he was going to say and listened as he pointed out and narrated  what he was seeing on the images … skin thickening … abnormal lymph nodes … mass … lymphoma or just inflammation … “something isn’t right.”

my mind was spinning and i wanted to be clear  about what to do next. who should i follow up with? what was my next step? he’d be writing up report and referring to local surgeon for consult to advise next step to do multiple concerns – what to biopsy first, for instance.

i walked out to my boys waiting in the parking lot and dissolved in sobs. i looked up and saw my friend tina walking past our car and our eyes met.

thus began the Long Wait. I was referred to a local surgeon (recommended by dear medical friend). his soonest appointment was december 31. for a *consult about next steps.

i have no formula or way to describe the living out of those long dark days. they were dark. i fought overwhelming suffocating fear. i researched endlessly. mostly that would trigger anxiety that threatened to take my breath away. i shared with many of my dear kindred friends and was lifted by their encouragement, their perspectives, their HOPE. my hubby was a ROCK, repeatedly assuring me that i was going to be fine. that we were in this together.

and each morning, i called the surgeon, hoping for a cancelation. one never came.

the holiday season descended, gatherings happened.

i should note that the week of my ultrasound, that week my left breast began to look and feel noticeably different. a puckering was happening on the underside; redness and a heaviness that was noticeably different from my right breast. there wasn’t ever a solid typical lump but it was clearly heavy and firm across a large section. the swollen lump(s) in my left armpit held steady. i did find that hot showers and massage seemed to help them shrink somewhat.

during the wait, i knew i had to take the steps i could take and be proactive in ways that resonated as valuable. i wrote this on an index card i looked at daily: “TOOLS: Daily Run/Arm Yoga;  No sugar/No gluten; Daily Hot Shower; Heat Compress; Supplements.” these were healing steps that felt empowering during those dark days.

i had to (mostly) decide to not consult dr. google. because that always brought me to a dark place.

my dear friend, shawnna, had returned in november from a move out west. when i learned of her arrival, and their family’s plan to return back out west late spring, my intuition was clear: GOD knew i would need her close for a rough season … but then i would heal, and she would fly again. i *knew it. she has been an angel of real healing and life and insight and mentoring and a deep sharing of the darkest hard, and here she was … just in time. i knew.

during this waiting space, i remembered a practioner of an alternative medicine that, through her “strange tools” had managed years before to completely accurately assess maddie’s food allergies. i decided to make an appointment with her, to see if she could uncover any piece of the current picture in my body.

i went to her office the week before christmas, sat in her chair and held instruments and she did her tests and assessments. her initial tests for cancer in the breast area came up negative and i could feel myself exhale. she continued on for some time, all the while making suggestions that in retrospect, didn’t make sense. at the end, we were discussing a summary of her findings and then i heard her say, “there was something.” HUH? my stomach dropped. yes, she said … she initially didn’t see anything but then, something registered in the area of the pancreas. there was an indication that “something is going on, could be a malignancy, could be a virus …” She reiterated that she didn’t see the picture of someone out of wack but rather, that something is going on and that it is going to a rough few months but i am strong and well and will be fine.

i knew her words to be true. something was wrong. and i would be fine.

on my drive to her appointment that day, i had stopped to get a notepad to take notes. when i got home, i titled the notebook, “Healing 2016.” even from 2015, i knew that the next year would be my year to heal.

during those dark waiting days, i had a very clear message in my spirit that i knew to be true and real and believe the Father gave me,”You are well.”  i wrote that that and received it.

finally, december 31 arrived and i was sick nervous. hubby and i went to the surgeon’s office. the waiting room was bathed in sunlight and really warm; hubby fought off dozing. i ran in to a friend whose young daughter had battled cancer. amazing, the gift of these run in’s that encourage me even in the chaos.

the appointment was a pretty basic consultation. he did an exam and got some background. i was hoping of course for some information – something! – but there was none really to offer. he said that there are calcifications in the right breast that are clumped – could be fine or pre-cancerous. in the left, 2 (?) lumps … he said the first step would be to biopsy to see what is – it’s the only way to know for sure.

my biopsy’s were set for the following wednesday at 9:45.

more waiting.

truthfully, i dread even walking through the memories of biopsy day because it was so painful and difficult. it still feels raw.

alas … we dropped the boys off at lori’s and went to the same place i’d been december 15, for the ultrasounds/mammograms. i checked in and went first for my stereotactic biopsy of my right breast. it was awkward physically and painful but definitely manageable, and the nurse/tech was SO kind and tender i felt such comfort.

next was the left, ultrasound-guided biopsy. i lay on my back, lifting my left arm, and the horror began. in retrospect, and even after it was done that day, we realized that the incredible inflammation of my left breast was likely the reason for the excruciating pain and bleeding during the biopsy. i remember one moment where both the dr and tech were looking at images on the screen of my left breast and the dr commented that the masses “look more cystic today” so he said he was going to attempt to drain them. i felt hopeful – cysts! however, he was after much pressing and prodding and poking, unable to drain. i was bleeding heavily by then. he still needed to get biopsy samples from my left nodes. the pain mounted as i tried to remain still in an uncomfortable position and my breast bled. finally, it was over. i felt the urge to throw up and the sweet tech had me sit and sip some water. she then said i needed to have another mammogram of the very breast they had just battered. i was able to do one and then said i simply could not and would not do more. i was crying.

i left there after many hours, drained, hurting and spent. thankfully, my guy brought me home and tucked me in bed.

i’d been told i would likely hear from  the surgeon within 2-3 days. the biopsy’s were wednesday and i felt i’d get the call friday.

i took the boys to the park friday late-morning … the sun was out, the fresh air felt great it felt great to move and breathe. and pray.

at 4:41 pm a call came from an unknown caller. i knew. i took my phone in my room, closed the door, and answered.

it was dr. faught. i remember hearing him say that the right breast was fine, all benign. then i heard “tumor”, “same tumor in left breast and lymph nodes.” i don’t remember anything else. he offered to have us come in monday morning to meet in person and talk through this. he said he was sorry.

there was pounding at my bedroom door. maddie was calling out that we were late, we needed to leave right now for an overnight youth retreat she was attending.

i motioned hubby in. my look told him. we hugged so tight. i felt dizzy. and i had to put my game face on, because it was time to load the family in the van and take maddie. i would say nothing yet, would not burden her with this … yet.

 

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2 Responses to “the whole story part 1”

  1. liz Says:

    Dear friend, this is so interesting and heartfelt. I I’m the kind of friend that wants to know every little bit. You are wise to record all of these tender details, as there will come a day when this will all be a distant memory. Love you so much.

  2. Stacy Says:

    Sweet Emily,
    I have been waiting for you to fill this space with the words of this journey. You’ve done so heartbreakingly well. I am so sorry for the diagnosis, the pain, the fears and the wait. I have so much admiration for you because you are facing this trial well– for resting in the truths of Scripture and His words to you, for finding little pockets of joy in the midst of grief, for persevering. You are doing this!!! Blessings and hugs to you, Emily!

    Love you!


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