keeping abreast | keeping a breast

I’ve sat down to write this blog post no less than 6 times. What do I say? Do I even want to reflect on what is happening, or do I just want to move on? Is it a permanent state, or just a moment in time?

My second opinion surgeon is a woman known for her stance that we are over treating women, that one day we’ll look back and regret the mastectomies that were not needed. And, her conclusion: mastectomy it is, scheduled for July 12. That timing is a bit of a sweet spot, allowing me to live my life for a bit but hoping the pre-cancerous cells don’t graduate into invasive cancer.

Despite the news, it was one of the most refreshing doctors appointments I’ve ever had. Even though Dr. Esserman was over 2 hours late, I didn’t mind it, because she spends so much time with her patients. Whoever she was with before me is equally important. But back to why it was good. The first thing she asked was, what are your goals? It felt like a refreshingly patient-centered approach. Well, my goals are to avoid chemo and radiation in the future if at all possible, and to determine if I have the stamina for ongoing surveillance and the scans and biopsies and false positives and positive positives.

She replied, if you had said that you wanted to save your life, then I wouldn’t recommend this surgery. There are no guarantees that a surgery is life-saving. But given what your goals are, the pre-cancerous cells could become invasive in between screenings, because those scans are really just a moment in time. And you’d be back at square one with the need for chemo.

We sat there, in the cramped dimly-lit room–me topless, Mike fidgeting from being away from work before tax season and likely rolling through some PTSD triggers–and made a pros-cons list of the mastectomy (that’s the pic attached to the blog post).

We ping-ponged back and forth in the conversation. Loss of body integrity. Lowering chance of experiencing chemo again. Taking away the worry of a new cancer developing in my formerly-healthy breast. Possible complications with healing and reconstruction. Zero sensation on my entire chest. Eliminating the option of breastfeeding. Permanancy. Improving survivor-related fatigue in a way (e.g., being tired of living with anxiety of follow-up scans), because I will never again have a mammogram, because technically, I won’t have breasts or breast tissue.

But maybe the biggest point that influenced Dr. Esserman, Mike and me to get the mastectomy is that, as she put it, we won’t be able to screen you if you get pregnant. For those 10 months, you can’t get a mammogram or MRI. And what is supposed to be one of the most joyful things in your life could turn full tilt into a state of worry and panic–is that lump my pre-cancer turning into cancer, or is it just natural breast changes during pregnancy? What is going on in my body that we cannot feel or see? Why am I bringing a child into the world with this horrible disease hanging over me? Is the other shoe really dropping, is my life ending, at this literal moment that I become a mother, and bring another life into the world?

Pretty compelling stuff.

Dr. Esserman said that perhaps in 10 years they will look back and realize the surgery wasn’t necessary. But, I will be living those 10 years and have time to make peace with my decision.

After we all agreed on the plan, she walked over to me, her face up close to mine and eyes parallel with her hands on my knees, and said, I know we’ve made this decision and you feel really good about it. But it’s still a loss. And you should be able to mourn that loss.

So maybe that’s why I have been stalled in sharing this with you. I’ve buried the feelings and haven’t wanted to think about the loss. That will come. I have time.

But the anger has been there, simmering around. My patience is short and my ability to care about other people’s piddly shit is nill. Why did these pre-cancerous cells develop when I’m on the hormone therapies that are supposed to protect me? It makes me question why I’m slogging to the infusion center each month for a painful shot (actually, it’s called an implant b/c of the thickness of what they deliver into my stomach), getting my blood drawn to measure estradiol levels, remembering to take my slough of pills each day. It’s all a crapshoot. Imprecision medicine.

And even though I adore my first team of surgeons, I’m going to switch over to Dr. Esserman. I’m a convert. And the shear convenience of having all my care team in one institution at UCSF is enough. I can’t tell you the hours spent on the phone dealing with insurance and medical record transfer and primary care physician crap.

After the surgery, we will be waiting on pins and needs for the pathology to come back, to be certain I do not need chemo. And this reality made me think of you all, especially as I read an article this week about “holding space” for others. To sum up and connect it to you, you have all held space for me–you’ve walked alongside me in my journey, without judging me, making me feel inadequate or trying to fix me. When you hold space for me, you’ve opened your hearts, offered unconditional support, and let go of judgment and control. I’m just sorry that I’m asking you to continue holding this space.

With cancer, the opponent is life. And I am out to live. Find light in the darkness, strength in the weakness. Light and strength = Mike and I are sipping wine en route to Italy for our fifth anniversary.

So, here we go.

Thank you all and much love,

Meaghan

PS 2 articles about my new surgeon are here:

http://time.com/4299646/laura-esserman-and-shelley-hwang-2016-time-100/

mike always plays this game with me to pass time when we’re traveling together, making a choice between less-than-ideal hypothetical options. would you rather have hair on your eyeballs or on your tongue, no matter if you shaved or cut the hair, it would always grow back? would you rather eat a mayonnaise popsicle or ketchup popsicle? 

i feel like this is my life right now.

last week, i saw my plastic surgeon for post-op monitoring and for him to clear me back to work. he stepped back in shock when he saw the bruises across my left breast. “what happened???!!!” after i provided the highlights, he sat down, deflated. “but we just spent three years getting your breasts even and fitting into clothing!” yep, i got that. we talked about the likely options, and he showed me what 5cm, the span of my atypical cells, really was. it’s pretty significant when talking about a breast that isn’t the DD variety (aka, me). this was all a surprise, but i didn’t have much time to dwell on it, as i prepared to go back to work and hogged the last few hours of medical leave with friends, friday night lights, and the couch.

my first breast surgeon appointment is for april 6. but after some sweet talking and arm twisting with the scheduling gods, i was able to get into another breast surgeon on friday morning; she was to be my eventual second opinion, but i ended up seeing her first. i finally overcame the real inertia i had around getting my medical records from UCSF sent over to her office in another hospital system. and, i was also afraid that the other hospital system would require additional testing of me; they did, a mammogram, but i put my foot down.

i do love this breast surgeon though. she’s a straight shooter but also has compassion in her delivery. here’s what we learned.

the area is big at 5.4cm. it likely won’t ever go away. the hormone therapy i’m on is probably helping prevent it from becoming something more right now, but we’re unsure how long that will last. if we act soon, i may be able to avoid radiation and/or chemo. 

we have three surgical options:
1. do an excision biopsy. this would remove the atypical area, and would not focus on getting clean margins around it. i would have quarterly scans of some sort, which likely would lead to more procedures and biopsies. and, the surgeon thinks i would eventually need more surgeries to remove more atypical areas that emerge, if not a mastectomy.
2. do a lumpectomy. same as above. but with the focus on clean margins, this would leave me with about 1/3-1/2 of a breast in the meantime.
3. do a mastectomy. and with reconstruction involved, it would still be 2 surgeries.

ugh. ugh. ugh.

back in 2012, i was told i didn’t need to have a double mastectomy, that the trend for more young women to have them was most often not medically necessary, as in my case. so, my choice was a single mastectomy. if i had known then what i do now, i would have opted for a double.

the things i most care about–being able to breastfeed and having any sensation left on my chest because a mastectomy severs all nerves–are on the line now. 

my oncologist will not let me go off my hormone medications to get pregnant unless i have a surgery with clean margins. she doesn’t want to take that risk with the atypical cells in my body. and at that point, it’s also not clear if 1/3-1/2 a breast would even produce enough milk to feed a kid. 

my surgeon doesn’t like that idea either, because when pregnant, i’m not eligible for any screening tools–mammograms and MRIs are out because of their impact on unborn babies. so cancer could develop and spread unchecked inside me.

make no mistake, we are in zero rush to have a baby. but these are decisions that cannot be undone. 

neither doctors necessarily want me to have the surgery tomorrow, because i just had major surgery and general anesthesia, and there is a sweet spot between waiting for me to get stronger and healthier AND making sure that the atypical cells don’t progress into cancer. my surgeon commented on the stamina i’ve already expended, having had five surgeries so far. and if i opted for more minor surgeries and surveillance, that requires a different kind of fortitude.

mayonnaise popsicle or ketchup popsicle?

so, i’m planning for the mastectomy right now. i’ll still go to the next surgeon appointment on april 6, but this feels like that is the best option for me as of today. i asked the surgeon if we could wait until july or august. she thought it would be ok but wants to schedule it and figure out what else i’d need to do in the interim.

what else i want to do is:  go on my first work trip tomorrow, go to italy for our five-year anniversary, see family, hang out with friends, get stronger, be able to graduate out of physical therapy for a short window even, enjoy my range of motion and arm mobility, lift stuff, be as normal as possible, and have time to let my decision between a mayonnaise popsicle or a ketchup popsicle sink in.

xom

spoiler alert:  biopsy results are in–i don’t have cancer but a type of pre-cancer.

*************************

when i was little girl, i remember thinking that i might be someone special, just waiting to be discovered for some incredible talent that i hadn’t even discovered yet. like someone would see me walking down east leonard street and say, “wow, she’s destined to become the world’s best ballerina.” this despite the fact that i quit ballet after i peed my pants because i was too afraid to ask to use the bathroom. warm pee running down my tighted, leotarded, six-year-old legs, collecting in a pool around my pink ballet shoes. 

i daydreamed a lot of scenarios–a pro-tennis player (i’ve played tennis under ten times in my life), an HIV/AIDS researcher who discovers the cure (my eyelashes always got in the way to see through the microscope clearly), an archaeologist who unlocks the biggest link in our evolution (i don’t like feeling perpetually dusty), a biomedical engineer who creates the world’s best amputee prosthetic limbs (physics was the hardest subject that i eked through, vowing never to turn back after finishing the final exam). 

these daydreams have largely dissolved. i know myself, what i’m good at, what gives me juice, what sends juice into the world. so i’m a pretty typical thirty-something. and i’ve come to be ok with that.

what a cancer patient is always seeking is a “typical” pathology report or scan result. atypical, abnormal, unusual….those aren’t desired words for us.

i received a message from my oncologist’s office yesterday morning, “dr. rugo will call you when her plane lands.” we all know how that usually goes when the big guns are brought in to deliver the results. so i did what any typical person would do. i reorganized my underwear drawer, walked in the sunshine to a taqueria and got a beer, perused the public library shelves and got annoyed that i missed some cool black history month events there, and helped my friend mary unpack in her new apartment. typical time-passing stuff, all the while playing through absolutely every scenario possible and coming to accept them, calmly, almost serenely, thinking to myself, “i’ll ask to have my port placed in the same location. i need to talk to HR to figure out how to extend my medical leave. i wonder which chemo drugs they’ll use this time.” and so on.

“well meaghan, it’s not the worst news and it’s not the best news.” 

the news:  i have 5cm of atypia in my left breast (my artist-formerly-know-as-healthy left breast). this a risk factor for developing breast cancer, kind of like ductal carcinoma in situ (DCIS). often times when these atypical cells are excised, there can be invasive cancer embedded in them too. but other times, they can sit in a breast and never change forms or become cancer.

i have two options:  take a watchful waiting approach with more frequent scans, or have the area surgically removed through a lumpectomy. we’re working on getting an appointment with the surgeon to understand her opinion, how the surgery would work, how it would leave my breast, and so on. when i told dr. rugo that my gut reaction was to opt for surgery, she thought it was a good idea. and then when i asked her if my hormone therapy (the monthly zoladex shots + tamoxifen) help prevent cancer from developing, she said of course and don’t stop them.

as the news has sunk in, i have many more questions. if i’m on hormone therapies, why did this happen? did the radiation that got scattered to my left breast cause this, given that the biopsy location is towards the center of my chest? what about the lymph nodes that were active on the MRI? what if the tissue is removed and invasive cancer is found, then what? given that 5cm seems significant, how was this missed on my clinical exam in january? how does this change my screening in the future? how severe and intensive will this surgery be, and would anything else in my treatment plan change? why am i atypical? why can’t i just be typical again?

i’m scheduled to return to work in two weeks. i just wanted these last few days of medical leave to be, well, typical–reading, yoga, walks, sunshine. instead, i have this. and breasts with criss-crosses of steri-strips on them and the left breast with a serious bruise from the core biopsy (that’s another story for another day – very glad it’s over). 

thank you all for your kind, encouraging and generous selves. it’s helped to know you’re there…even though i’m sorry that i need you to be there. ttyl. 

xo
meaghan

does the story end? are we actually in the beginning? or the middle?

we don’t know. now, maybe ever.

as part of my ATM gene mutation, i started getting MRIs twice a year. my first one was a friday ago, before the president’s day weekend. it was a standard medical system smorgasbord–a scheduling snafu, woozy IV process, uptight receptionist who lectured me for being late (even though i was early), and half a medical marijuana gummy for relaxation.

the MRI is an hour where i am topless and face down, being shot in and out of the noisy tube.

in the cancer world, there’s a real term, scanxiety. it describes the state of mind in anticipating the scan, enduring the scan, and waiting for the scan results. while life seemingly moves forward once a patient gets dressed and walks out of the exam room, the scanxiety walks out with us too. to you, i look normal. to mike and any close partners, they sniff it out and we imbue it onto them. the household bumbles with apprehension.

i messaged my oncologist’s office this past wednesday, asking for the results. four days is a long time to wait, and we were going on five. i got a message back immediately from the nurse with a “dr. rugo will call you later.” pretty transparent what was about to come.

my left healthy breast has a clump non-mass enhancement. and just reading the actual test results this morning, there is some activity in my central mammary lymph nodes. neither of these things were present in my last MRI in winter 2013 or my left-breast mammograms in 2014 and 2015. these things that lit up could be a variety of things, including cancer and/or pre-cancer. they could also be absolutely nothing. but dr. rugo and the rest of the team does not want to take any chances. there is no “wait and see” approach here.

they scheduled me for the first available MRI-guided core biopsy, tuesday morning. after a game of HMO football, we got the procedure approved. the UCSF scheduler brent complimented me on my good work and wondered if i threatened my HMO with a baseball bat. not that, brent, just pulled the cancer card.

if you would indulge me in revisiting the past, i had a core biopsy before, in ~january 2013, to help inform my surgical decisions. as i explained to friends, it may have been the most difficult treatment and procedure to endure in this whole mess. being awake on an elevated table, face down, under mammogram compression, while they insert lidocaine and epineprhine to numb my breast (and make my heart race), and pull tissue–not just a few cells, but pieces of tissue–back through the needle, all while a vacuum-like machine is sucking and popping discordantly in the foreground. the techs then led me to have a mammogram immediately afterwards, to make sure that any titanium clips they placed to note the biopsy site are situated properly. if the clips are amiss, the procedure starts all over again. which happened to me.

my breast bled so much afterwards. i remember the drips of blood on the clear reflective mammogram plates. i must have looked aghast, because the technician tried to encourage me by suggesting i had “really good circulation to have lost this much blood.” my breast turned blue then black over the next few days.

so my procedure is this procedure. only add in the MRI part, being shuttled in and out of that damn noisy tube.

someone explained to me that scanxiety isn’t necessarily about what might happen; it’s about what did happen. it’s not so much about worrying, it’s about remembering. for me, today, it’s all of those things.

on tuesday, i think i’ll eat the full medical marijuana gummy and hope that i’ll find my place in the story.
xo
m

what is ATM?
a) ATM: a machine that spits out money. 
b) ATM: a really big gene that when mutated, increases one’s risk of breast cancer by 25-40%.
c) ATM: alcohol, tequila, and marijuana, for short (thanks, laurie).

while i’d really like to spend time with a) and c), i have some news about b).

when i was diagnosed in 2012, i went through genetic testing for the BRCA mutation. the geneticist said it would be highly unlikely that i’d have it, given our family history and ethnic makeup. she was right–no mutation. but for awhile there, hanging in limbo, i was snowed in by the “what if” questions. 

will i have a double mastectomy? will we be able to separate out our embryos for those that carry the mutation? will i ever bring my risk of breast cancer down to zero percent?

when the results came back negative, i heaved sighs of relief. one less layer of complexity to maneuver. one less quiver in the arrow.

this cancer thing…psssha. a total fluke. a freak incident. bad luck to walk right into the path of a lightning bolt. sure, i asked, “why me?” and sure, i blamed myself for a litany of things that i did to cause it (e.g., too much cheese, too many veggie corndogs in college, too many parabens in my shampoos, too few babies before i was 30). but the universe’s randomness brought an iota of comfort. the quote from zen and the art of motorcycle maintenance: an inquiry into values rolled around in my head: “for every fact there is an infinity of hypotheses.”

so i moved forward, with treatment, procedures, a plan.

then this fall, while cruising around on some oncology science portal (maybe i picked up via osmosis some bit of knowledge as i slept through my dreaded 8am freshman year biology class), i noticed a certain gene mutation that is a is common is both renal clear cell carcinoma, which my dad has, and breast cancer. i pounded out a quick note to my oncologist asking for the details. she agreed further testing would be practical and referred me to the geneticist. and in september, i had an hour-long appointment, mapping my whole family tree (again), tracing my family history (again), and getting my blood drawn (again). they said, “the chances of there being a smoking gun here are really tiny. so don’t expect any clarity.”

i mostly forgot about it.

then i ordered mike a 23andMe kit for his birthday gift, thinking, “cool, maybe we’ll both learn something interesting on this gene stuff.”

oh what would become the irony.

mike and i went into the genetics appointment together. we walked in with three doctors in the room (note: this is not usually a good sign, even for a teaching hospital.)

“well, we may have found our smoking gun, meaghan.” 

dry mouth. ears ringing. sweaty palms. 

before i go on, i want to put it out there that one of the most annoying things about having cancer is when people wrap their own blankets of concern around me. “did you eat a lot of red meat?” if my answer is yes, then the asker will be comforted internally, “oh, ok, i don’t eat a lot of red meat so i’m not going to get cancer like her.” bacon, sugary drinks, not exercising, not meditating…whatever the “it” is that will cause our bodies to have cancer or protect our bodies from getting cancer. 

ok, onward.

the smoking gun is called the ATM mutation. we all have the ATM gene but very few of us have the mutation. it’s quite rare. and just recently has been found to have an increased risk of breast cancer in women who carry the mutation, a 25-40% increase (for reference, the BRCA mutation increases risk  50-85%; if you fit into normal risk factors, your chance of breast cancer is 12%; hereditary cancers only account for 10% of cases). this mutation also has zero relationship to renal cancer, so my initial inquiry for this additional genetic screening didn’t pan out in relevance. 

where does that leave me…?

i’m angry.

i’m angry that i’m catapulted right back into cancer land, there doesn’t seem to be a way to forever put cancer in the past. i’m angry that no one tested me for this three years ago, even when they were aware of this mutation and its linkages to BC, likely because of the costs of genetic testing at the time. i’m angry that i might have made different surgical choices then, that maybe i would have had that double mastectomy. i’m angry that my left “healthy” breast falls into a higher risk pool now. i’m angry that i had to ask for this test. i’m angry that i need more frequent and additional screenings now on, with two MRIS each year, each inducing scanxiety on its own. i’m angry that people with the ATM mutation (like me) usually don’t receive radiation treatments (like me) because it increases that their risk of cancer. i’m angry that i received radiation. i’m angry that the ATM mutation may have contributed to my surgical complications. i’m angry that i spent three years thinking my cancer was just a random fluke. i’m angry that i spent three years working through the guilt that i could have prevented this through certain lifestyle choices. i’m angry that now mike has to get tested, because if we both carry the mutation, our embryos and children have a high chance of developing a horrific childhood disease that is akin to ALS for kids called ataxia. i’m angry that he has to become a patient because of me becoming a patient. i’m angry that my parents might somehow feel implicated in this, that they have to get tested to inform their own healthcare. i’m angry that i had to bring my family into this conversation, that i have to boil this down to what this means to my brothers and nieces.

the fact of the matter is that even with this genetic mutation, it still might not be the reason (reasons?) i got cancer.

despite my geneticist’s smoking gun reference, we likely will never know.

coming back to zen and the art of motorcycle maintenance, “the truth knocks on the door and you say, “go away, i’m looking for the truth,” and so it goes away. puzzling.”

………

my drain is out. i’m healing well and my doctor is monitoring the stitches closely for any signs of trouble. i’m grateful for medical leave, mike, and you all. talk with you soon.
xom

i’m a week out of surgery today. thank you to everyone who has reached out and checked in, brought food and flowers, and just sent warm thoughts our way.

i went into surgery excited, in a way, to get it done.

at the same time, i was forgetful of the whole process. i got woozy when the nurse was trying to start my IV, so they covered me with wet clothes and reclined me further. the surgeon came in and said, “wow, we haven’t even done anything to you yet!” and he proceeded to draw in purple sharpee all over my torso and chest. like connect the dots, but with human tissue.

i was also forgetful about recovery. recovery is painful (see 8-inch bruise of my leg/booty here where they removed some fat). pain meds are really dizzying. sponge-bathing is only so thorough. being unable to lift things is lame. being able to sleep only on my back wedged between 4 pillows is a process (although i’ve managed to sleep until noon more days than not. it’s like i’m 14 again!). post-surgical compression garments leave much to be desired, both in their beauty and comfort. a surgical drain swinging from my body still reminds me of a grenade (except when it pops open in the middle of the night, waking me up with a solid dousing of bodily fluids. then i know exactly what it is). 

in other updates, thursday, friday and saturday are a blur. from my perch in the coveted chaise section of our couch or the multi-pillow nest in the bed, i organized pictures and caught up on the 71 drafts in my email inbox. but, i have zero recollection of doing any of those things, so i’m sorry to the recipients if they were nonsensical.

the el nino rain has been perfect ambiance in which to rest, although it causes a bit of stir craziness (the first time i went outside since thursday was monday…!). and because of the tube they stuck down my throat to help me breathe, i was left with barely a voice until monday. so it’s been a pretty quiet weekend all around.

mis parientes are here assisting and that’s been such a help, especially as we’ve passed around some persistent cough (as they say, families that cough together, stay together).

i *hope* to get the drain out tomorrow (i think there’s another song in here about drains, sung to the tune of prince’s “purple rain” but i can’t quite get the lyrics down yet).

and then we continue recovery, slow and steady, tapering off pain meds and antibiotics, moving my arm and walking a bit more each day, eventually graduating in a few more weeks to physical therapy.

so do me a favor–stretch your arms to the ceiling and do a couple rotations and enjoy that release. i’ll get back there too!
xom

tomorrow, we’ll have another go at making me physically whole. tomorrow, we’ll hope that the radiated and thin skin on my chest holds strong and doesn’t retract like an old-school shrinky dink and result in an infected mess. tomorrow, we’ll aim to recreate a breast that is softer and doesn’t feel like duct tape strapped across my chest.

after my surgical incision split open and became infected in 2014, i had a temporary tissue expander put into my chest, along with part of my back latissimus muscle, tissue and skin (that included moving some moles and birthmarks from my back over to my breast in an odd and amazing feat). i knew this expander was only temporary, because according to my surgeon, “even medical grade plastic bags can disintegrate or pop in your chest, and then we’d have to start from square one.” no thanks.

but there’s never a good time to have surgery, right? like, “oh cool, let me just hop on into the operating room and be unable to lift more than 5 pounds for a few weeks, and be unable to poop for a week from pain meds, and be unable to sleep for more than a stretch without said painkillers, and be unable to shower and wash my hair and move unencumbered without a surgical drain, and be unable to peak under the bandages for fear of what lies beneath and whether it matches what is in my head.” 

instead, there is life to be lived, jobs to be worked, new bosses to engage with, trips to be traveled. 

and there is medical reality. 

the surgeon gave me a stern lecture and the surgery got scheduled, january 14.

i’m grateful to have some time off work to both mentally and physically prepare for a 4-hour surgery, and then to recover.

i get a sense about the relative meaning, to others, of this surgery when i hear that it’s “just reconstruction.” “just reconstruction” means a lot to me though (and to insurance companies–they, thankfully, have to cover it because it’s considered a treatment still from breast cancer). it means every day and night when i change clothes or shower or look in the mirror, my breast cancer is less glaring, less traumatic. i can fit into clothes. buy bras that don’t look like ugly medical garments. rest easier about what might pop out or float away when i’m in a swimsuit. not have people notice and wonder about the big divet at the top of my chest.

i know the surgery could go wrong, the skin could fail, infection could come around again. and in that case, i’ll cross that bridge if and when i get there.

see you on the other side – 
xo

meaghan