I was a new transfer student sophomore year when our paths first crossed. She was sunny and smiley and hilarious. She had a way with words and a charming Louisiana timbre. She had a huge, yellow plush duck named Harold. We hit it off immediately. She wrote a column for our university newspaper and I clipped her pieces because I knew she would be famous one day and I wanted proof that I was her first true fan. (I still have them, even after two Marie Kondo purges several years ago.) I had heard some quiet murmurs from mutual friends about something bad that had happened to her the year before, but whether out of selfish naivety or fear of invading her privacy, I did not ask her about it and so did not know until well into our friendship that, just months before we met, she was physically and mentally assaulted in her dorm room by girls who she thought she knew and her life course was forever changed. We have been good friends, the best of friends, for almost 20 years. We have husbands and families and very different lives in different states and hardly ever actually get to see each other. But in the last calendar year, we have each hopped on planes and come to each other’s rescue in times of need. Exactly two years ago today, I learned that she was an alcoholic, and today she is two years sober. I am not very good with confrontation. Healthy disagreement is a life skill that I simply did not learn. Sometimes I blame our physical separation on my de facto status as one of her long-time enablers, but the truth is that I had worried for awhile, but didn’t know what to say. She was a wonderful and fully functioning mom and writer. Who am I to judge? I could write a decently long list of legitimate reasons why she would want to relax with wine every evening. But still, when she asked me outright, “Do you think I am an alcoholic?” I hemmed and hawed. I have a lot of guilt about that but thankfully she has a tribe of best friends and someone else stepped up and did the hard work of intervening when all I could do was try to calm that boat she was rocking. I will forever respect and be grateful for the friend who probably saved Harmony’s life.
I have been immensely proud and inspired as Harmony owned her addiction and not only quit, cold turkey, on her own, but for two full years has put in the painstaking and gut-wrenching work to figure out how she got to where she was and what to do now. Attempting to make sense of a young adult trauma and the havoc that it wreaked on the foundations of her personhood. And all this, even as some of us in her innermost circles could not immediately attest to the severity of her problem. THAT is strength and courage and determination.
And amidst this personal cataclysm she has continued to be my rock — whether staging a video chat intervention about getting my depression appropriately treated or physically dragging my old, broken TV to the curb during her recent visit because I couldn’t decide what to do with it in my cancer-diagnosis fog.
Harmony, I hope I can be half as good a friend to you as you have been to me. I hope you know how amazing you are. I hope I can do you the credit of learning from my mistakes and figuring out how to communicate with those I love about things that are important, even when it’s HARD. I can’t wait to read your best seller. You are freaking rocking sobriety and I LOVE YOU SO MUCH!
Read her story in her own words on her blog modernmommymadness.com (not an ad, just a genuine recommendation).
This was written and shared with her knowledge and permission.
Nothing is straight forward after being diagnosed with cancer. Exhibit A: The tummy ache that revealed a mass in my spine.
My husband informed me that it would be pretty inconsiderate not to disclose up front that everything is fine. I’m fine. My new posse of sketchy lumps and masses (introduced by name below) have all been deemed, by my village of radiologic experts, benign. But I invite you to remain seated with your seatbelt fastened, keep your arms and legs inside inside at all times, and take a lap on the roller coaster that was my most recent medical scare.
A little over 2 weeks ago I started having a tummy ache. Right upper quadrant (RUQ) pain, as it is specifically noted in the medical world. Pain up under my right ribs that got worse when I took a deep breath. I’m a doctor. I’m reasonably intelligent. There are only so many things that RUQ pain can be, gallstones being the most common. While it didn’t quite fit the profile, it made the most sense to me and to my primary doctor and the sharp medical student working with him. The normal next step in this situation is an ultrasound of that part of the abdomen to look at the gallbladder and liver. By this point, as is the case with a statistically significant portion of all new medical problems (citation needed), it was late Friday afternoon, meaning nothing at all would happen for the next 3 days. So I called a doctor friend who has his very own, high-tech ultrasound probe that plugs directly into his iPhone. My Friday evening consisted of getting my pasty, soft RUQ prodded and imaged by my friend, at my request, on his living room couch, chatting with his wife who is my good friend, while witnessing their three year old daughter experience a whoopie cushion for the first time. Fun times. Until those ultrasound waves resonated off of a liver mass. Meet Phil.
In short, instead of an ill-timed but totally-benign gallstone, I had a biggish liver mass. And even though my breast cancer was stage 1A, meaning NO SPREAD, not even to one lymph node, a liver mass is at least mildly concerning. I passed this along to my doctor and by some medical and administrative miracle, I was able to finagle my way into an MRI that next Monday. I have had two MRIs in the past. One was of my hip which revealed “degenerative changes” instead of a stress fracture from my 10K training program. (Doctor: I’ve got good news and bad news… you do not have a running injury, but basically your hip is old. Me: Rude.) And the other was of my brain, which showed nothing at all, proving that my swimmy vision was just my very first migraine aura at age 37, and not a brain tumor or aneurysm or anything else of any concern. I’ve been crammed into that tiny tunnel and experienced the mysterious noises and vibrations, the anxiety of trying to hold perfectly still for almost an hour. It’s a mental challenge for even the least claustrophobic among us. (For the truly claustrophobic, there is medication.) But add to that the threat of metastatic cancer and it became a breeding ground for emotions and musings so broad that I’m still re-experiencing them weeks later, all set to the soundtrack of a music genre of my choosing, pumped in through magnet-immune cords and headphones. When they asked me for my selection, I considered Imogen Heap (my go-to zen vibe) and, in a moment of fleeting angst, Green Day (but what good is angry punk rock if I can’t yell-sing along at the top of my lungs?). Knowing I couldn’t possibly sound less cool to the hipster MR tech, I went with, and I quote, light classical. But I know what I like, and I did not want Wagner in the mix.
In I went, to the tune of Antonio Vivaldi’s Four Seasons. As the machine powered up, so did my mind.
I imagined each of the uncountable protons in my body spinning, spinning in their respective magnetic fields, straightening up like obedient children in the giant magnet of the MRI, then dancing, dancing to the radio frequency pulses of the machine.
I wondered how it was possible to manipulate the most infinitesimal unit of our physical existence and not come out the other side inexorably altered.
I pictured Phil, perhaps silently plotting an epic battle inside my body, or more likely, smugly benign, sitting in on some sort of a silent protest of my sanity.
I pretended I was an enigmatic, badass galactic traveler preparing for deep sleep in a sleek pod, or mid-takeoff in a cush one-woman spaceship, or spinning dangerously in an interdimensional vessel to make contact with other life forms… basically all the Hollywood sci fi heroines I could come up with. I imagined, for the first time, my family scattering my ashes off a silently bobbing sailboat somewhere in Manchioneel Bay in the Caribbean.
I wondered what the geographic coordinates are for Manchioneel Bay and thought about how that would be a cool tattoo and how I should hurry up and get one before I die.
I pictured my four year old daughter as a teenager, an adult, maybe a mother, an activist, a problem solver, a force for good in the world.
I wished peace for my husband and love, all the love.
I pondered how surprisingly synchronous the disconcerting pulses of my magnetic cocoon were with Vivaldi’s orchestral Summer thunderstorms.
And then they pulled me out.
Phil was just one of FOUR liver masses. Meet his cronies, Herb, Hugh, and Orville. They all appear to be BENIGN tangles of blood vessels, called hemangiomas, as was predicted by my braintrust of radiologists. But amongst the shenanigans inside my liver, Jean Luc was discovered, quiet and solitary in my 11th thoracic vertebra (one little bone in the middle of my spine). I had to wait two more days to get a bone scan, during which time, only after I fled a coffee shop crying one morning, I fully re-entered Denialville. My brain had stressed out one too many times and shut itself right down. I went through a period like this shortly after my original diagnosis. I was forgetful and spacey (not in an enigmatically badass way) and laughed too loudly at inappropriate times, but I was also creepily unconcerned. Three cheers for built-in coping mechanisms. It allowed me to focus on things that really mattered, like making 28 vegan heart shaped pancakes the morning before C’s breakfast-themed preschool Valentine’s Day Party, a task I fully brought upon myself. (Fun mental image time: me, unkempt, lacking the technical acumen for such an endeavor, frantically mixing and flipping, right up until 8:55 am, throwing a parka over my grease-splattered PJs, and baby-wiping crusty batter and yesterday’s smeared mascara off my face at the red lights I hit on the short commute, C totally unaware, belting out the latest seasonal iteration of Baby Shark from her carseat.) After that romp, a shower and an hour in the scanner with a warm blanket was actually a pretty nice little Valentine’s Day treat. But even more so, of course, was the news I received just a few hours later that Jean Luc was a total dud, not showing up AT ALL on the scan, which was 100% good news. (Most likely another hemangioma, I’m told.)
Meanwhile, my tummy ache resolved. And like my racing heart from a few weeks prior, there is no tidy explanation. But I’ve been injected with contrast and a radioactive materials, and scanned and zapped from stem to stern in a radiographic goose chase that should leave me relieved that there are no more, at this time, malignant lumps inside of me. Which is good, because I am running out of names.
It was nice to be a princess. I mean, the reason for my temporary royalty was rather unfortunate, but it did have its perks. I could get used to the regular delivery of neatly folded laundry to my room, drifting downstairs at my leisure to a fresh cup of coffee, and kissing my perfectly coiffed daughter farewell, her chauffeur sweeping her away for preschool drop off. But, unlike the monarchy, uncomplicated postoperative recovery is predictably finite, and for this I am obviously grateful. Today I am six weeks out from surgery. I dismissed the nanny and chauffeur about 10 days ago. And by that I mean that I told my loving parents that I could not adequately express my appreciation, but I knew they had lives to lead. I assured them that I was capable of at least basic self, child, and household care and they cautiously agreed.
Really my only hiccup was an elevated heart rate one day that landed me in the ER. Six hours, a CT scan with tingly-hot contrast, and a few thousand dollars later it was determined that I did not have a pulmonary embolism (a blood clot in the lung)— both cancer and recent surgery increase the risk for that. No one could figure out why my heart was beating much faster than normal, but at least no one said, well not out loud or to my face, that it was probably just my “nerves.” And maybe it was? But as a typical physician-patient who prides herself on utilizing emergency services only if mangled or hemorrhaging, I would have considered such a comment highly insulting. As I think most people would. (Doctors, please don’t ever say that. Ever.)
Now it is time to move forward. The results of my Oncotype test finally came back with a very low score which means NO CHEMO. And no more life-altering decisions. Step one in moving forward: make a hair appointment and procure some functioning styling tools. Now, I have never been known as a maven of hair care or manipulation (I made it well into my 30s before owning and learning to properly operate a flat iron), but lately my mop has gotten impressively neglected, even for me, due to my T. rex arm situation and the threat of impending baldness. Apparently my psyche dealt with the immensity of this last and important piece of good news by focusing in on something as frivolous as my appearance.
Admittedly my personality tends more towards melancholy skepticism than a state of joyful hope, but throwing cancer into the mix tips the scales even further. Cancer sometimes has a way of sapping the happiness out of celebratory situations. Even the smallest tumor (40mm all told, in my case) is still cancer, which is huge and ugly and scary. Even if the doctors “get it all,” the reality is not so absolute. Survivors are living statistics— lifespans measured in percentages, recurrence always a possibility. For my type of breast cancer, all the odds are in my favor. I am incredibly lucky and genuinely thankful. While I cannot and will not live in continual fear, still there remains that sliver of a chance it will come back again, which casts a sliver of a shadow over even the brightest spots, especially now when it is all so fresh.
Additionally, there is the issue of my new boobs. In this department I am also extremely lucky. Cosmetically speaking, given the circumstances, my switcheroo receives pretty high marks. I was able to get immediate implants, skipping the interminable middle step of soft tissue expanders (also known as the “iron bra”), and aside from a very minor brush with necrosis on one side, I was even able to keep my own nipples. So, I am not complaining or overly upset about it, but it is a fact that the new boobs are foreign and different and I am still adjusting to them and constantly aware of them. At this point, the pain from surgery is gone, the wounds are closed and the swelling resolved. However new just this week are intermittent zings of discomfort which are likely benign and expected symptoms of surgical nerve injury or regrowth, but are unsettling nonetheless. And, with every firing of a pectoral muscle fiber, I can feel the silicone orbs under there. Every time that happens, there is a twinge of concern that I am stretching too far or exerting too much, causing some sort of damage. So an action as simple as pumping hand soap out of the bottle or even yawning a certain way can trigger a momentary flood of thoughts and worry that, over the course of the day, is quite draining, dampening feelings of sweet relief.
All this to explain why it is that I have not screamed and shouted, high-fived and Facebook-exclaimed my way through any part of this whole affair, even with the best possible news. I know that as time passes, it will all feel less and less significant and urgent. My brain will eventually accept that the girls are here to stay and stop perceiving them as something new. Confidence in the healing process and my physical capabilities will grow. Life will go on, and as we make our way back into our routine, and maybe even make new plans and set off on new journeys, there will be less bandwidth available for all things cancer. Although I do find it a tad rude that in addition to ditching my princess crown and doing my own laundry again, I will be contending with some complex new psychophysical baggage. Sounds about right. At least I will be doing so with a fantastic, newly beach-waved balayage.
Three and a half weeks have passed since my surgery. Most readers know, through the wonders of social media, that I am doing surprisingly well and have received good news so far. Bob is long gone and thanks to my fantastic and proactive surgeon, none of him was left behind. The silicon is taking and looking slightly more normal each day. I’m off all pain meds and, I’m just going to have to say it, I’m pooping again. I am mostly compliant with upper body movement restrictions, and I can function pretty well with T. rex arms. I have even been to the gym a few times and skirmished with the octogenarians over the recumbent bike and seated, upright leg machines. I have returned to almost normal personal hygiene and can wash my own hair, albeit testing the limits of neck flexibility. I have put on makeup and gone to restaurants.
Backing up…I didn’t understand, until personally going through it, the amount of extremely important and life-altering decisions thrust in the face of cancer patients. Yes there are algorithms and protocols, yet there is a surprising amount of nuance. In my particular case, here are some of the questions that I had to answer in a matter of 7-14 days, with professional guidance of course, but ultimately it was up to me:
Mastectomy or lumpectomy plus radiation?
Unilateral or bilateral mastectomy?
Before surgery, should I get a breast MRI to look for any areas of concern on the non-cancer side?
During surgery, should I have some lymph nodes removed and checked on the non-cancer side?
Reconstruction or no reconstruction?
What kind of reconstruction?
Which type of implants?
Some were easier than others to answer. And it is a luxury that I do not take for granted that my type of cancer did not dictate any of those to me. Many women aren’t so lucky. But every single question started a cascade of reading, research, grilling my support groups, listing the pros and cons, weighing the risks and benefits, deciphering emotion from evidence-based recommendations… It. Was. Exhausting. Easily my least favorite aspect of this whole cancer debacle. Yes, even worse than smelly pits.
And now here I am, seemingly at the end of my cancer journey as suddenly as it started, and my oncologist, chipper with all the good results, dealt a blow she didn’t realize by presenting me with more decisions.
Looming large is the question of whether I will need chemotherapy or not. Ten years ago there would have been no discussion of chemo for my type and grade of cancer. But now there exists a nifty test called the Oncotype DX® which determines the likelihood of chemotherapy to prevent recurrence. Low score = no chemo, high score = chemo. My oncologist informed me, however, that there is an intermediate score range wherein I might have to DECIDE whether or not to put myself on chemo to maybe decrease the odds of recurrence but to certainly feel like shit and lose my hair and maybe even fry some of my vital organs (you know— heart, lungs, what have you).
And finally, due to my cancer’s appetite for estrogen, I will be starting a medication called Tamoxifen that blocks the estrogen receptors on any silently lingering cancer cells. This is not a choice, rather a standard of care to which I will begrudgingly adhere. The side effect profile is downright rude– ranging from killer blood clots (literally) to weight gain and moodiness. HOORAY! Additionally Tamoxifen is known to have a drug interaction with a medication that I am currently taking– Zoloft. Without opening Pandora’s box of my history of waxing and waning depression dating back to my teens, know that the optimization of my current antidepressant and dose were hard-fought over the last three years and now I have to start over again. Cue Kate spiraling into a pit of despair. More unknown, more decisions! I genuinely would rather have the four rounds of chemo than receive “intermediate” results and have to decide. But those results are completely out of my control, “outside of my hoola hoop,” to quote the wisdom of my dear friend Harmony. So, I will try my hardest to table that. As for the antidepressant, my only choice is to soldier on with a new medication and hope for the best. That’s not one of my strong suits– hoping for the best– but I commit to making the effort. And, to be clear, I will absolutely continue to play the cancer card as I see fit.
Funny how perspectives change. Two months ago, I wanted an Apple Watch for Christmas. Six weeks ago, I wanted Bob, the lump, to be benign. And today, all I want is to not stink! I’m 2 for 3, because obviously, this is a cancer blog. But Husband gave me an Apple Watch as an early gift a few weeks ago and today, on post op day 6 (no shave day 7), which also happens to be Christmas Eve, my plastic surgeon told me I could take a shower AND wear deodorant! It’s a Christmas miracle!!!
It took two surgeons seven hours to scoop out all of my breast tissue, a few lymph nodes and hopefully every bit of cancer, and then jam hemispheres of silicon under my pectoral muscles. And the very worst part about all that, it turns out, is the inability to get fresh and clean. (A close second is narcotic-induced constipation, but we won’t go there.)
The problems: 1) not allowed to get my incisions or drain sites wet, 2) not allowed to lift my arms, 3) not allowed to wear deodorant and 4) the dreaded Jobst surgical vest. You see, this madonna-esque (but not in a good way… see previous post for pictorial evidence), hospital-issue vest-bra that I was given, manufactured by a company named Jobst (which is probably run by a Vladimir), has no redeeming characteristics… well none other than securing and protecting my brand new boobs. Due to the nature of its job, said vest fits snugly everywhere including the arm holes, and is thus constantly in contact with my pits. Additionally, it is made of that synthetic material that absorbs odors like a sponge and then time-releases a continuously musky essence. So it does not matter how many sponge baths I attempt, the cycle of stench continues.
Pain? You ask. Yes, I have had some, but it has been controlled to a tolerable level with regular low doses of narcotics. Feeling dizzy and out of sorts for days after a long anesthesia? Yep. But that’s what a newly furnished and decorated bedroom is for. (Another feat made possible by my friend Harmony who facilitated and directed the transition of our bedroom from a glorified storage unit into a soothing haven, pics to come.) A swollen, bruised, uneven and unrecognizable chest? Not knowing the final pathology and next steps, if any, in treatment? Well, that isn’t so great either, however oddly still not as bad as simmering in my own BO and feeling dirty 24/7. I feel like my hygiene and aroma should be one of the seemingly few things left within my control, which is probably why it upsets me the most.
So I nearly cried this morning when the doctor casually mentioned that I could not only take a shower and wear deodorant, but also switch to a regular, medium-compression sports bra instead of Vladimir’s torture vest from hell.
Kids get so many toys and games, some people get gadgets and electronics, others get clothes and shoes, some people even get fancy jewelry or brand new cars with big bows on top. I, however, get to take a shower. And I will bask in that shower like a bar soap commercial from the 1980s and I will be happier than everyone else in the world.
So many weird things are discussed and planned before having your boobs chopped off. I’m thankful for the support groups I’ve found my way into, and for family and friends who have lovingly and extensively researched the matter, because I’m out in left field right now, and I need help. It makes sense that my neck will feel tight after surgery and that a fuzzy, lavender-scented, bunny-shaped neck pillow that can be heated or cooled will feel fantastic. Big body wedge/pillow for the bed? Sounds amazing. I sleep on my side and stomach which is obviously a no-go post-op. My sister amazonned me both a fuzzy neck bunny and a medical grade wedge, because I certainly didn’t think of any of that. I was fretting about my daughter, who turns four just days after my surgery, and in stepped my bestie Harmony, who found a winter break day camp at the YMCA and called to reserve her a spot. (Harmony just left after spending a week with me, away from her family, two weeks before Christmas. She will get her own blog post at some point because she did oh-so-much more than set up child care!) Oh yeah, I’ll have four surgical drains dangling from my chest and I haven’t given an ounce of mental energy to a solution to that, but my mom personally experienced this and came up with her own drain hack involving fashionable scarves (naturally) which she will bring and style for me.
But the most humorously perplexing issue by far has been… my PITS. That’s right. My armpits. I haaaate armpit hair. I shave daily. It itches me if I don’t. I feel dirty even when I’m not if I have any growth whatsoever. And Harmony brought to my attention that I should address this prior to surgery after which I am not allowed to lift my arms for THREE WEEKS. Simple solution: a wax. No hair for three weeks. Perfect. Or so I thought. Apparently one has to have one to two weeks of hair growth before getting a wax. I had a pre-surgery long weekend getaway at the beach with my husband and I wasn’t going to be anything other than clean shaven as I was taking my girls out for their last hurrah in a bikini… which of course had to be excessively photo-documented. (Take a moment to imagine me, usually selfie-averse, awkwardly taking pictures of my chest from every angle on the beach. Yep. I was that person. But selfies are a practiced skill and I am just not up to par.)
There was still time thankfully and I began the arduous growing-out process. And let’s just say that I don’t have cute, fluffy, popstar pit hair which was having a moment a few years ago (or is it still?). Think less euro-chic, more lumberjack. At boot camp, I felt the need to explain my pit-uation to everyone in my immediate vicinity which of course lead to a lot of breast cancer oversharing and sweaty hugs.
Ten days in, I could take it no longer and made the executive decision that it was time to make the waxing appointment. I was so excited. But just before I hit “complete” on my online booking, I paused. I hadn’t taken any time to consider the downsides of waxing. I quickly consulted one of my online support groups for guidance and my reservations were validated. I have never waxed anything before so I have no idea how my skin will react. It could be fine, but I could also come down with anything from mild irritation to a flesh-eating bacterial infection. Lymph nodes will be removed from my armpit during surgery, flesh-eating bacteria of the pits would be, well, the pits. So, I scrapped that idea and immediately shaved simultaneously bemoaning the needless ten days of axillary annoyance and the fact that I would, in fact, have to deal with itchy, hairy pits on top of having my boobs chopped off. RUDE FOREVER!!!
As has happened in a few other instances, I took this disproportionately badly. Like almost as badly as the diagnosis itself. My brain is all confused about what and how much to feel about anything these days. But, if I do end up needing chemo and/or radiation (this is still unknown and will not be known until after surgery), I suppose losing all my pit hair would be the the one perk. Gotta take those where I can get them!
So, my last day to shave my pits will be Monday December 17. In the surgical world, time is measured by the number days after the operation. (“Post op day 1” etc.) I shall amuse myself by measuring time in no-shave days. Christmas will be no-shave day 8. Oh what fun!