think before you pink

its the most wonderful time of the year for basic white girls like me. fall foliage! pumpkin spice lattes! cozy scarves! quilted vests! and pink ribbons everywhere you look.

as a metavivor [look it up] i have a love/hate relationship with pinktober. i recognize that i have benefited tremendously from all of the attention breast cancer has received, and as a former educator i’m all for promoting awareness and sharing information.

while awareness is great, action is better. spending money on something simply because its emblazoned with a pink ribbon often doesn’t do much but benefit the company selling it. the pink ribbon has become a very lucrative marketing ploy, and as someone living with cancer i cannot tell you how offensive that is. your time and money would be much better spent on a reputable organization that directly funds research and/or provides support for women and men undergoing treatment.

this october, please take a moment before purchasing anything pink to look into where your money will go. it should be indicated somewhere, but if its not ask siri or alexa. they’re already aware you’re looking at it. better yet, put it down altogether and do something for someone with cancer. check in with them, offer to accompany them to an appointment, arrange for someone to clean their house/make them dinner/watch their children. ANYTHING that would make their life easier since october can be a miserable month for us. just don’t show up wearing pink.

that’s life

it’s been quite awhile since i updated. i was [naively] attempting to get back to some semblance of a normal life by distancing myself from this blog. its hard to forget you have advanced cancer when you’re constantly updating a site devoted to it i thought. but the truth is it’s always with you. regardless of how many days have passed since diagnosis or whether you’ve read the magic words “no evidence of disease” on radiologist’s report.

which brings me to why I’m updating. three years ago today i was admitted for a bilateral mastectomy. three years ago today i thought bidding farewell to my mutinous breasts would bring me peace of mind. three years ago today i didn’t yet know that those sneaky cells had already migrated and i would always be anxious about their whereabouts.

in the days and weeks that followed i spent many sleepless nights googling and lurking on message boards about advanced breast cancer. and every time someone stopped posting i automatically assumed that they had died and would then retrace their timeline to determine how long they had been active. it must seem twisted and dark, or at the very least indicative of too many hours spent watching forensic files. but that’s where i was at the time. i would never want anyone that has stumbled upon this site to do the same kind of morbid deductive reasoning.

so here i am. still very much alive. with no evidence of disease. three years later.

#chemobrain

so. it’s been awhile. i had every intention of updating sooner, but i was busy getting my ass handed to me by the decadron/ zofran/ benadryl/ taxotere/ perjata/ herceptin/ neulasta cocktail coursing through my veins. if you’re wondering what that feels like just imagine being drop kicked. then dragged. for miles. down a jagged cobblestone street. while you have food poisoning.

thankfully i’ve completed my six rounds of treatment and my subsequent ct revealed “subtle stable liver lesions” which is good. i’d rather have read “spontaneous remission” or “this liver is immaculate, we misdiagnosed” but you can’t always get what you want. you get what you need. so now i’m off the taxotere, the highly effective and dreadfully toxic chemo drug but continuing with herceptin and perjata, the targeted therapies with fewer side effects. which means that my nails, despite currently appearing poised for a walk on role on the walking dead, will grow back pink and healthy. and my patchy baldness is evolving into a wispy human version of duck down. i’m already using shampoo AND conditioner in an attempt to coax it into a pixie cut by memorial day. a girl can dream!

during my self-imposed hiatus i also underwent genetic testing. in simplest terms, i inherited a mutation that essentially allows tumors to form and grow without being attacked by my immune system. it’s extremely rare and has all sorts of other implications but oddly enough i feel relieved by the news. now i know why and how this happened. i can stop obsessing and overanalyzing. the mystery has been solved. if only robert stack could be here.

lucky indeed

in the month since my last post [i know, i know, cliffhangers like that are rude and inconsiderate. i apologize] quite a bit has happened. i went in for the third round of chemo, followed by the ct two weeks later. having learned my lesson the hard way about having every report sent to the house, i simply took the disc this time around and went on my merry way.

big mistake. HUGE. i don’t do so well with the waiting game. it gives my overactive mind the time to invent all sorts of worst-case scenarios and turn any inane symptom into a crisis. my pesky aching joints? must be bone mets. blurry vision? obviously there’s a tumor on my optic nerve. lower back pain? clearly a kidney infection from the chemo cocktail. so after nearly a week of waiting i caved and we retrieved the radiologist’s report. and despite agreeing before arriving at the office that we would wait to read it i just happened to catch a glimpse of the last paragraph. the liver paragraph. and even a cursory glance revealed that this report had a much lengthier explanation at the bottom of the first page. which immediately caused a very shrill voice to escape me with a flurry of protestations about how that had to be terrible, horrible, no good, very bad news. but bless raymond’s heart, he calmly continued folding the report, sealed the envelope, and ushered me out of the office.

a few hours later we were back home, holding the sealed envelope and our breath. i wanted to read the damn thing all week but now that i had it in my hand it was nearly impossible to open. but somehow we did. and thankfully that big ominous paragraph was detailing the POSITIVE response to treatment and comparing the previous size of my liver lesions to their current tinier stature. and the summary reiterated the global positive response with no new growth. anywhere! which is amazing news. and i was properly elated for an entire weekend, even through my fourth treatment.

but then i hit a wall. hard. maybe it was the toxicity build up from four rounds of chemo and drinking that dreadful berry flavored barium. or i just broke down after weeks of joyless eating. perhaps being thrust into “medically induced menopause” at the ripe old age of 28 had something to do with it, too. but mostly it was the realization that those spots on my liver are almost certainly mets. and i was really holding onto the tiniest shreds of hope that they were somehow benign. i couldn’t and wouldn’t do much more than lay on the couch for an entire week. wearing shorts and a tank top. in FEBRUARY. because i have hot flashes now. but the time has come to get off the couch and return to the land of the living. because i don’t doubt for a second that my positive response to treatment is thanks to all of the thoughts, prayers, and support from each of you as much as the chemo cocktail, supplements, and superfoods. and for that i can’t thank you all enough.

rainbows, butterflies, and lucky luciano

i’ve been true to my word and have made a concerted effort to reduce my assault on reason and focus on the positive. however,  in the spirit of full disclosure, i did make one teeny tiny sassy comment to the unannounced salesman that interrupted my relaxing afternoon. but he kind of deserved it. don’t knock on my door, during ellen, as i just woke up from a nap, inquire about my exterior siding needs, then attempt to build rapport by commenting on my hat. when i clearly have no hair underneath it. unless you want to have this engaging conversation:

well-meaning but ignorant salesman: oh i like your hat. you cold?

hypersensitive and unnecessarily abrasive me: actually i’m going through chemotherapy and i lost my hair. so yes, now that it’s winter i’m always cold. you should get one, too.

mortified well-meaning but ignorant salesman: oh…i’m sorry to hear that…

me: thanks. we’re not interested so you can save your sales pitch.

in hindsight the poor kid was just doing his job and i really didn’t need to make him feel like an ass. but i consider it a public service for chemo crusaders everywhere. maybe now he’ll be more tactful. or not. regardless he ran away pretty quickly. mission accomplished.

that conversation aside, i’ve been partaking in several positive endeavors. like creating a healthy liver inspiration board, the centerpiece of which is a hilarious animated liver giving two very enthusiastic thumbs up and sporting sneakers. compliments to my sissy for finding that darling little guy. we’ve christened him lucky luciano the liver. despite the fact that we no longer have italian last names. some things never change.

so i need to call in a favor and ask all of you dear readers to continue your much appreciated hoping/praying/candle lighting/sage burning because i’m going in tomorrow for my third infusion, the halfway point [!!!!!] which will be followed by a ct to check up on mr luciano. and we desperately need him to take care of business and give us some good news. because, as the eloquent and entertaining jaclyn dixon pointed out, “you’ve been eating like a fairy princess and you have acupuncture all the time so it’s got to be harmonizing like the doobie brothers.” well said.

fear and loathing in glassboro

it’s been awhile since my last post, and quite frankly i was holding off until i had something noteworthy and not negative to share. but considering my holiday season consisted of shaving my head on christmas day and spending new years eve curled up in the fetal position on the couch while recovering from chemo, that seems highly unlikely.

i vastly underestimated how traumatic it would be to lose my hair. obviously i knew it was coming, i had already donated 11 inches of it in preparation. even so, when i woke up on christmas eve to find the pillowcase covered in hair it was quite jarring. i spent the remainder of the day terrified of touching my head and frantically sweeping stray strands from my clothes. i tried to persuade myself that it wasn’t so bad, i could hold onto my hair for another few days or so since i had so much of it. and, as i stubbornly insisted to ray after arriving home christmas night, it wasn’t like i was losing patches of hair. just some strands. and i have plenty! then i ran my fingers through my hair for emphasis. like a fool. and found myself holding a considerable chunk of it.

there i was, 11 pm on christmas, sitting on a stool in our bathroom as ray ran the shears across my scalp. and as i watched my hair pile up on the bathroom floor i found myself sobbing. heaving, hysterical, gulping for air sobs. if you need a visual, refer to the scene in v for vendetta when natalie portman gets her head shaved. granted my barber wasn’t a masked vigilante holding me against my will…but you get the idea.

so now im rocking a jarhead-esque buzz.  and unlike natalie and anne hathaway and sinead o’conner before me i’m patchy bald, not making a statement for my art bald. because my hair isn’t growing back in. i look like a cross between a hobo and that silly novelty game with the bald man and the magnetized hair. thankfully it’s winter so i can be inconspicuous and hide under all sorts of hats and scarves. and i do have two fabulous wigs but they’re not exactly comfortable, physically or mentally.

after that i geared up for my second round of chemo on the 28th. this time was much easier since i knew what to expect. plus i had an entourage with me, and that makes everything better.  which brings us to new years eve. since it was three days out from treatment we had to stay in for the night. honestly, i shouldn’t complain about the side effects because it hasn’t been too terrible so far. no nausea, no vomiting, but intense fatigue and aches. which essentially means i’m a pleasure to be around. as we rang in 2013 by watching anderson cooper nervously giggle at every inappropriate comment made by kathy griffin, i was getting more and more irate about the tweets being broadcast on the crawl. one woman actually tweeted to anderson “thanks for making my nye, i’m SO sick with laryngitis and couldn’t go out tonight.” laryngitis. seriously? so you lost your voice. drink some tea with honey, take a ricola, and get over yourself.

all this snarkiness and negativity is getting old. i know that i’m entitled to feel this way, and that i need to express and own my emotions and blah blah blah. but it’s just so unfamiliar to me. i used to be a logical, rational person. but now i have this deep seated resentment about the most ridiculous things. like people with laryngitis. and hair. and unrestricted diets.  it’s not their fault i have cancer and my life is a monotony of supplements, superfoods, and doctor visits. and i should be happy for them that they get to enjoy blowouts and cupcakes while tweeting about nonsense. hopefully i’ll get there soon so my next post can be about rainbows and butterflies.

 

chemo, take one

it’s been exactly one week since my inaugural chemo cocktail and i am happy to report that I’m feeling pretty good. friday went as well as it could have, despite being an exceptionally long ordeal.  the nurses were wonderful and i didn’t have any adverse reactions to the three drugs. so they sent us home and i spent the remainder of the weekend waiting for the dreaded side effects. by sunday night i had myself convinced that i was going to be one of those people that just coasts through without any discomfort. but then i woke up monday morning.

soaked in sweat, shaking, with searing soreness through my muscles and into my bones, i did my very best carolyn burnham [annette bening’s character in american beauty] and told myself to quit being a baby and get it together. and i did. for a few hours anyway. but by noon it was game over. i felt dreadful, everything tasted terrible, and i was too uncomfortable to do anything more than curl up in a ball on the couch. plus i was becoming irrationally angry. about ridiculous nonsense. like shampoo commercials [those jerks with their long hair!]. and joan rivers on fashion police [shes 100 and so mean and she doesn’t have cancer!]. and ashley greene [for her portrayal of alice cullen, a FICTIONAL CHARACTER that is immortal and impervious to pain]. it was all too much. so i called my husband crying. then called my mother crying. and continued to cry to our very confused puppy.

thankfully, that was the worst of it. i felt positively terrible monday, slightly better tuesday, and by wednesday i was merely tired. i can handle tired. and now that i know what to expect i will tolerate the next cycle much better. game on, cancer. your days are numbered.

the good, the bad, and the ugly

so there have been some unfortunate developments since my last update. my ct showed a few small lesions on my liver, presumably malignant. in the words of my oncologist, those opportunistic lowlifes hijacked my lymph system to “misbehave” and set up shop in there. rude. but slightly ironic, since over the past five years i taught several “misbehavers” and have no tolerance for such shenanigans. regrettably, this discovery modified my diagnosis and bumped me up to stage 4. and my chemo cocktail has changed a bit in order to nuke the bastards lurking in my liver. rest assured their days are numbered, as i start treatment friday.

the good news is that my other organs and bones are pristine, my heart is healthy as confirmed by the echo, and i refuse to let this sneaky disease make any more rogue moves. i may have spent a fair amount of the past few days alternating between raging out and crying, but now it’s time to fight. like a girl. and win.

survey says…

at the risk of getting too clinical, the tumors in both breasts were found to be estrogen positive as well as HER2 positive. additionally 12 of the 19 lymph nodes biopsied tested positive. as a result my left side was classified as stage 1 and the right is stage 3. both of which are better than stage 4!

so what does all this mean? essentially i have an aggressive, rapidly replicating form of breast cancer. fortunately my mastectomy was a success and they were able to remove all of the existing tumors, but without further interventions my risk of recurrence is “frighteningly high” [the oncologist’s words, not mine]. since I’m nearly healed from surgery and the shingles are clearing up i’ll be starting chemotherapy as soon as the prerequisite blood work, echocardiogram, and ct scans come back clean. i’ll have chemo treatments every three weeks for six sessions, so about 4.5 months worth, along with an antibody called herceptin which will continue after the chemo for a full year.  then a daily round of radiation on my right side lasting about 6-7 weeks. followed by hormone therapy for 5 years. provided the mayan prophecy is wrong and we all live past my birthday.

about last night…

my apologies if my bitter tirade offended anyone. please rest assured that the moment has passed, i’m not in any pain, and i’ve resumed my [mostly] sunny outlook. everything happens for a reason, even though at times it may seem absurd and horribly unfair. and while were speaking in clichés, here’s another one that has proven accurate: every cloud has a silver lining.  although the past few weeks have been difficult, demanding, and draining [pun intended], we just received some exciting news from our wonderful wedding photographer. she graciously nominated our wedding to be featured on borrowed and blue, a destination wedding website, and it just got published. if you’d like to check it out here’s the link: http://www.borrowedandblue.com/santa-barbara/weddings/erica-ray