NOT cancer V2

Posted on November 2, 2012 by meaghancc

seeing a child experience something for the first time, like my niece mia here riding a pony. yes, i think she and her sister deserve one if it can bring this unabashed joy with it. ahem, lucas and shae.

the artists in the world. when mike and i were picking his parents up from SFO, something caught my eye off the 101, up in the sage scrubby hills to the west: a gigantic heart sculpture lit up in red lights. living in san francisco for over 8 years now, i know so many people who have left a piece of their heart in this great city. and that some person with time to spare wanted to share that love with a passerby made me smile. and helped me clarify how powerful the arts can be in our daily lives.

maniacal kittens literally bouncing off walls. and playing with my dad’s hair.

the smell of the panhandle and golden gate park after the fog has set in and heavy droplets (foglets?) hit the pavement, all so strongly eucalyptus. while i know these trees aren’t the best for local plants, that rich earthy smell twins so many memories of the park–the bluegrass festival, walking partners, dog-sitting sophie and gertie who would drag eucalyptus bark along for the walk, sunbathing 4 days each year, bay to breakers, bounce houses, blind beer tasting, confusing lis and mike’s dogs’ eucalyptus-bombed paws with urine (above a certain density, i swear there is a similarity), and people-watching the stoners, early morning tai-chi experts, roller-dancers, and everyone else using this space as their living room.

the people of ocean philanthropy.

hearing an old familiar song and having your heart swell with joy. when i was at the acupuncturist this week, an enya song came on the mood music. i know enya is probably not what the cool kids are listening to, but the song is pure and beautiful. and made me laugh at recalling my ‘mystical phase’ in 5th grade or so when i wanted to be an archaeologist and listened to enya on a purple boombox while digging for arrowheads in the backyard.

city hall, the ballet, and opera house all lit up in orange for the giants.

people posting halloween pictures of their pets and kids on facebook. in years past, perhaps i didn’t have any friends with kids, or friends with kids in costume, or friends with kids in costume who shared adorable photo of said kid on facebook. it made my day.

and speaking more of kids, hearing about so many friends who are pregnant or exploring adoption to bring this richness into their lives. may the morning/day-long sickness pass quickly and the adoption paperwork be smooth sailing. we know you’ll all be aces as parents.

the term, “face salad.” as in, “he has some amazing face salad.”

elliot and cam reminding me of one of my favorite quotes, by einstein: “there are two ways to live your life. one is as though nothing is a miracle, the other is as though everything is a miracle.”

and in closing this post off for the night, we all know there is a lot of joy to be had in the world. but in the meantime, we are thinking of family and friends in the east and glad they are safe after this devastating hurricane, although they amazingly seem no worse for the wear. for those we haven’t been able to connect with, we hope the same is true for you.
xom

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Dispatch from the Lesser Half Vol. VI

Posted on October 29, 2012 by meaghancc

I’m still here.

Thank you all for your continued prayers, visits, mail (holy crap do we get a lot of mail, which is great), care packages, and Guestbook posts. We read them all and accept all of our mail. Keep it up. It really helps Meaghan (and by extension me) to know so many people are thinking of her and care for her. And it has led to a burgeoning relationship with our UPS delivery guy – a friendly sort who is earning a non-denominational winter holiday gift from us.

I haven’t posted for a long time – mostly because of the amount I was working in September and October. But as you all know, Meaghan has done such a wonderful job of baring her soul and keeping you all informed that you didn’t need to hear from me. Her honest blog posts really do capture what it’s like for her to fight each day and give you all a bit of insight to her mind and her soul. While I kind of liked the fact that I had a private audience to that until August, I’m glad she is sharing with all of you. She continues to impress and amaze me with her strength.

I have obviously missed a lot of time on the blog so its hard to come up with many succinct thoughts about the journey. And that’s certainly what it is – a journey and a marathon, not a sprint. I think it’s important to not get too high or too low (I know, convenient thing for me to say) since this will certainly be a process. For example, in one week we met with the nurse practitioner who had a hard time feeling Meaghan’s tumor (because it was so small) and was impressed with her tolerance of the treatment. And then not two days later I was using an electric clipper to shave Meaghan’s head. Understatement of the year: not a fun moment. But we got through it – Meaghan by focusing on getting a picture of herself with a mohawk, me by doing my best impression of a barber asking questions of his client. My hereditary tremor and general distaste for what I was doing led to a mediocre effort that masked the effort I put forth. If this whole tax thing doesn’t work out, barber college is not in my future. I could be screwed.

Meanwhile, life goes on. Unfortunately we lost my uncle earlier this month and one of my dad’s cousins also unexpectedly passed away that same week. As my dad said, maybe it will just be easier to not answer the phone for awhile. Being far away makes it difficult already, but then having to stay close to home and not being able to get back for services and to pay back some of the support we have been getting was very tough. Fortunately we have been witness to so many great examples of ways to help from afar, so we did our best with that.

Another take away I have from the last month or so has been all of the help we have been getting. We were fortunate to have Meaghan’s brother Lucas for short stop and her mom Kathy and in town for about 10 days when I was very busy with work. That allowed me to at least feel a little bit better about getting home form work late and then also working on the weekends. I definitely felt the pull to be home and that definitely made managing like difficult. But we are getting through it and my work schedule isn’t as hectic for the next month or so. My parents also made the trip out to help us and see our house for the first time. It was great to have them here and treat them to the same treatment all of our guests have gotten over the last few months – no sightseeing and lots of chores. Ah, vacation. I know they would have come out for that no matter what, but it still means a lot to us. And now Meaghan’s parents are back in town – this time for a pre-planned visit. We are truly blessed to have such great families. Even though there are 2,000 miles away, they never really are.

We have also had lots of visits from great friends, some close and some who used to be close and are now not as close as we would like. You all know who you are – thank you.

I want to give a special shout out to Meaghan’s co-workers, grantees, collaborators, and work friends. The level of support and comfort you have given Meaghan is truly outstanding and has definitely helped lessen the burden on the work side of her life. Her team at GBMF hasn’t been getting enough appreciation and thanks from me for their flexibility and understanding. Her grantees and other work associates have been amazing as well. I was fortunate to briefly meet many of them recently at a local retreat that Meaghan attended. What a great group of people doing great work and surrounding Meaghan with a lot of love and support. So thank you to all of you, people of ocean philanthropy.

As I write this, our house is being surrounded by sound. Helicopters are flying overheard, car horns are blaring, fireworks are everywhere. You might be thinking, “are the cops arresting him because anyone who looks like a pale version of Peyton Manning and Phil Mickelson’s lovechild needs to be locked up?” The answer in this case is no, not being arrested – the Giants just won the World Series. Exciting for the city for the 2nd time in 3 years. Someday Cleveland, someday. Oh, and Go Irish.

Thank you to all of you again. I will attempt to be better at adding my two cents here from time to time. Until then, enjoy the week and your families.

Posted in Dispatch from the Lesser Half | Leave a comment

remembering gg…

Posted on October 24, 2012 by meaghancc

today is the 2nd anniversary of my grandma GG’s death. she died of complications from breast cancer, with my mom and aunt katrina by her side. she fought very, very hard for six years. and she was wonderful at it and somehow hardly let on how challenging it had to be.

we all miss her a lot.

her laugh and how she would throw her head slightly back. her clear blue eyes (inherited by only lucky cousins gus and jake). the gin and squirt in the tempered glass. how she’d shorten people’s names to end with an ‘in’ like my cousin stephanie would become stephin or friend tiffany would become tiffin. how she’d swat us all on the butt and make us laugh with well-worn phrases like “e-gads!” and “hot dog!” and “goody goody” (especially that last one when she found out the secret that lucas and shae were pregnant with mia). the breaded porkchops she’d make special when i would visit home.her horrible handwriting. wadding up money, peppermints, and kleenax in her pockets (which aunt katrina now comes by honestly). her sewing skills that could fix any tear or hem or issue perfectly. how she would pick up a conversation right where we left off. and her always telling me, when i’d be upset to leave staunton, that her and pop would be there when i got back.

i often wonder what she would say about this whole me-getting-breast-cancer debacle. i think she’d stay positive and encourage me to keep fighting. i wish i could get a hug from her.

my family doesn’t know i’m writing this post, but i feel compelled to share some things on here that are fairly private to us. my grandpa does not know about my diagnosis. he has seizures that can be stimulated by emotions. the family, together with one of his caregivers, collectively decided it would be too dangerous, unfair, and heart-breaking for him to know. not because of me necessarily but because of the raw reminders of my grandma and depth of his continued grief. he loves her–his pretty, his doll babe–so much and wishes, much to our sadness but sometimes humor, that he can be with gg sooner than later. probably like october 24, 2 years ago. obviously there has been another plan in the works instead, and we all are learning how to accept this.

i can’t remember for the life of me right now how old pop is. is he 90? 91? or 92? he’d probably be able to tell you how many days he’s been alive though, as he’s sharp as a tack. but just think of all he’s seen, tragedy he’s lived through, and golden times too. beyond our health concerns about him, i’d feel horrible saddling him with any worries, or pain, or replacement of his memories of me as an innocent little girl who was afraid of the horses near worden or who loved going on adventures with him to the dime-store to pick out some tacky beads, to the A&W to wave at the cars going by, or to the basement to dig around for treasures on his tool bench. because really one thing that is so special about pop is his ability to recall, and do so about beautiful memories, filling all of our heads with these memories that may have otherwise slipped out of view. and i’d like to keep his memory of me just like it is.

so here’s to gg, pop, and the beautiful memories they have given our family. we love them both so much.
xom

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on pins and needles…

Posted on October 22, 2012 by meaghancc

i’ve been dark on the blog for awhile. mostly because of quality time spent with visiting friends, san francisco friends, and family. but there’s still so much i’m processing and want to share with you. because i find that sharing is helpful to process, and processing is helpful to share.

i started having significant neuropathy, or pins and needles and numbness, from my knees down and in my left hand. it’s a nervous system thing and is generally uncomfortable and not fully treatable; if it gets really bad, it can affect my ability to walk, or write, or know the difference between hot and cold. it can also linger after treatments are over and stay with me permanently. there are very few side effects from chemo that don’t have a pill to help manage them – neuropathy and fatigue remain 2 of the trickier ones. i’m on vitamin b6 and glutamine powder each day as something that can possibly help, according to my oncologist but not authorized by the FDA. keeping walgreens in business, i start yet another drug that might help (you get the emphasis here because frankly it all seems like a crap shoot some days). it’s an anti-seizure med. so at least we can keep the seizures at bay, right? that was a joke. of course the neuropathy started 48 hours after my nurse practitioner said, “if you were going to have neuropathy, it would have started by now.” so please no one say something that i won’t have because i will end up having it, or at least that’s how i feel.

the same thing with hot flashes. most in my treatment team wagered i wouldn’t enter menopause. well, welcome to it. i’m just hopeful it’s only temporary. not that i miss all the perks of being a non-menopausal thirty-something, but there’s a longing for my old self.

it’s a really big week at work, perhaps the biggest our team has all year. we convene grantee organizations for an annual retreat to learn, share, and celebrate. 70+ of the best and brightest ocean advocates in north america fly in and work, laugh, learn, ask tough questions, steal golfcarts, skinny dip, and drink too much wine together. sometimes not all in that order. i will get a lot of positive healing energy from being around everyone.

i also know myself well enough to know all that energy will leave me exhausted. i don’t want to talk much about what’s going on and how i’m doing, but i want to be open to people’s concern, warmth, and support. more broadly, i’m struggling with understanding my new limits. i go and go and go and then it hits me like a ton of bricks. exhaustion. jumbling words. not making sense in my thoughts. and a sharp pain in my temple. that’s when i know i went too far, was too social, too active, too normal, or trying to be.

so i might have to excuse myself to recharge earlier than normal or even in the middle of the day. and when i get asked how i’m doing, the authentic answer i’m practicing is that: “i’m thankful to be here, it’s going to be a long few years, i don’t yet have light at the end of the tunnel, and i go day by day. today is a __ (fill in blank) day. but tell me about you.” and then request and receive a hug. i can never have too many of those.

some other things i keep forgetting to close the loop on with you: i’m fully BRCA negative, after a long go-round with the insurance company, so i’m thankful to not have to make those tough decisions; the biopsy of my leg came back inconclusive, but the rash is largely gone and now i just need to get the stitches out; the other acne and hormonal/chemo rashes are mostly gone too, so i don’t look like a 15-year old; whiz digested the muffin wrapper on his own and survived the ordeal just fine, as he’s running around the house now with his favorite new monkey toy from jason and alysn; my hair keeps falling out and we haven’t had the time to shave my head completely yet, but getting mistaken for a boy–while waiting in line for the women’s restroom–might have either prolonged the shaving or sped it up…one can’t be sure yet; my port sutures are almost gone but the port feels like an alien growing out of my chest; and while my weekly bloodwork shows white blood cell counts as relatively normal, my red blood cell counts and some other coagulators have taken a nose dive, so cutting my finger with a bread knife means 1.5 hours of bleeding…while wearing all white and going to a fabulous all white attire dinner outside in SF on friday night with some fabulous dinner mates and 2995 other fabulous compatriots…talk about the worst time EVER to be bleeding left and right.

that’s all for now. i’ll leave you with a picture of walkers from this weekend’s making strides to end breast cancer walk – the gerhardt ladies in springfield. i also posted to the gallery our san francisco crew with visiting clevelanders. 5 miles felt good for everyone. i continuously appreciate all that you do–whether it’s meeting up for a walk, fundraising in my honor, sending me a card, or a shooting prayer up to your god of choice. while i can’t seem to keep on top of thanking each and every one of you and being super in touch, i feel all of your love, and i hope you feel mine coming back to you.
xom

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checking in / a rant

Posted on October 15, 2012 by meaghancc

we’ve been lucky to have so many friends and family in town the past few weeks–for laughter, seeing how whiz handles a 1-year old (best friends!), meals in and out, polished floors, tears, backyard sunshine, and shaved heads (my brother lucas, pictured here with me and my thinning dome. we are both slightly paranoid our respective hairs won’t grow back). we feel like we’re leading a super rich and full life. i was really worried about that when handed the diagnosis, what would it all mean. so those fears have subsided…

treatment #6 is done. it went so smoothly–bloodwork, solid (my white blood cells are even on the rise! and i have low sodium, which requires eating something salty like a bag of chips. easiest Rx ever). nurses, outstanding. benadryl, coma-inducing. so we had lift off mostly, except for the morning spent at the dermatologist because my new fantastic NP didn’t quite know what to make of my leg rash. was it an undocumented side effect of the taxol? was it something that came about because of my weakened immune system? or was it just a ho-hum leg rash that has nothing to do with anything, except maybe a lingering side effect of a virus i had months ago? the four dermatologists who paraded through the exam room all had different thoughts. the biopsy results will come back in the next week or so, but best news is that it’s not likely serious. and probably has nothing to do with what’s happening with my butt. and with my last shred of dignity, i will share no further information on that.

new side effects otherwise include tingling in my feet and hot flashes. double bummer, but it means the treatment is working, especially at shutting down all my hormone producers (i.e., ovaries) and hormone receptors (i.e., cancer). i probably need some advice from the menopausal women in this crowd for the hot flashes, so have at it.

when we were watching the notre dame game yesterday, i learned that the coach brian kelly is super into raising money for breast cancer research. his wife is a survivor. the players were all wearing hot pink somethings on them. that’s all great. then, it seemed like every commercial was selling some pink piece of crap that donated a tiny percentage of their net sales (i.e., after they break even.) (i’m not in business school for nothing) to breast cancer organizations up to some relatively small total, if you read the fine print.

if you’re over the age of 18 and haven’t heard of breast cancer, you probably are an idiot. or a bad listener. or color blind. yeah, i said it. breast cancer awareness month and seeing everything awash in pink has been tough, and i’m still sitting with a new diagnosis. i’ve met women breast cancer survivors who want to run far, far away until november. because every advertisement is a reminder of a horrible, scarring experience that they went through. or maybe are still going through. and the last thing they need is a reminder–especially a demure, super feminine pink ribbon that somehow implies we should all just accept life chin up with hope, grace, and strength and without a full on cure–about the likely toughest experience of their lives.

i get it.

on top of that, i feel like i’m a revenue generator, and someone somewhere is making money off of me because of your compassion, your wanting to do the right thing, your awareness because breast cancer awareness month has been so damn effective. sadly though, i think awareness and prevention has been turned on its head for a consumer spending spree. all of us breast cancer patients and survivors are raising money for such wonderful (note dripping sarcasm) products, like 5-hour energy drink, a personal grooming kit, a wristlet purse, mayonnaise, sneakers, nail files, gum, a power drill, glittery flats, and even thong underwear. how lovely.

and on top of that, many of these products have in them the same toxins that contribute to the horribleness of breast cancer. i attended two nonprofit-hosted events in the last two weeks–both wonderful, fabulous, supportive events for women living with breast cancer. each of them gave away corporate donated make-up and skin-care products as part of the experience, to look good and feel better and embrace the new you while working and trying to stay on top of your stuff. and learn how to draw on eyebrows too. those who know me well know that i love products. love them. but as i pawed through these marvelous bundles, not one–NOT ONE–of the products are free of all the nasty stuff found on the environmental working group’s cosmetic database of known carcinogens or those chemicals not yet tested.

f*ck the world!!!!

you might say, “but look at all the good this is doing! all the money being raised for research! all that awareness and preventative self-breast exams happening this month!” i don’t deny the importance of funding research and improving early detection and survival, but i do object to how it’s being done. and i don’t want it done on my back. if you really want to purchase some pink products, this group, Think Before You Pink, has a set four questions to ask beforehand:

  1. does any money from this purchase go to support breast cancer programs? how much?
  2. what organization will get the money? what will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?
  3. is there a “cap” on the amount the company will donate? has this maximum donation already been met? can you tell?
  4. does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? what is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

you might not always agree or like what i share here, but please don’t be pink-washed.

whew. ok, i can take a deep breath. i know i’m not perfect on all my purchases, and maybe when i’m well i’ll try and more formally crack this nut.

but for now…i’m not quite sure how to end this post. hugs? saludos? cheerio?

it’s not always pretty, but if you’re reading, you’re still with me. so, a big thank you and xom.

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NOT cancer v1

Posted on October 12, 2012 by meaghancc

canadian thanksgiving. i feel like i get to celebrate thanksgiving twice.

the 20+ spider webs i counted in our backyard this evening. big or small spider, the webs are equally elaborate and somehow negotiated into every nook and cranny.

kittens’ soft downy stomachs (that one’s for you, marjorie. but it’s so true.).

rediscovering lipstick. or, um, actually discovering it for the first time in my 30s. it can make you look better than you feel.

ivy, the runaway dog who came back home to moira and owen.

skyping with lisa in doha over my morning tea after she tucked her kids into bed.

people (i.e., aeri and brian) who propose we have cat dates.

a beautiful baby, colette, born to alli and reese. she looks like pure baby doll.

being jealous of sabine who got to snuggle with a baby kangaroo.

old friends (like the ones in this photo from grad school) and remembering why they were such a big part of my life. because they are wonderful and loving and smart.

you all, and your incredibly open and compassionate posts that make me feel so connected and lucky to have you in my life.

my dad and how strong he is. and how he can fall right asleep even when he’s stressed.

and…mumford and sons new song, i will wait for you. this one is for mike, who is busy with work and trying to hold it all together, but still, i think he wrote this song for me. probably both in the literal sense because i’m always late, but in the emotional sense too. and i love him for both reasons.

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bookends…

Posted on October 12, 2012 by meaghancc

don’t let the mohawk fool you. this is going to be a more reflective post. it’s just that kind of week. but i had to show off mike’s handiwork and my temporary ‘do. 

i’ll spend time with you and my thoughts tonight. we started the week together and we’ll end it together. i’m listening to simon and garfunkel’s, bookends. it seems appropriate. time it was, and what a time it was. 

grief is something that unfortunately both of mike’s and my family continue to experience. i know some of you are grieving right now. my only solace is that we are grieving together. 

loss can be physical. it can also be metaphysical. i want to explore more of the metaphysical part, with excerpts from a writing by the psychologists kubler-ross and kessler i was given on the topic. i promise i won’t lose you on this one. you may even recognize yourself here. 

“grief is also the shattering of many conscious and unconscious beliefs about what our lives are supposed to look like.” we’re taught, and our lives generally reinforce, the notion that if we are a good person, things will work out. if we behave well as a child, we’ll get rewarded. if we eat healthy, exercise, wear sunscreen, volunteer in the community, and surround ourselves with loved ones…you get the point. the rewards being things like going to college, meeting the love of your life, getting a career you’re passionate about, buying your dream home, getting the world’s cutest kitten, and so forth. “finally, when we are old and gray, we will invite the family over to look at old photo albums, tell each one how much we love them, and then, that very night, die peacefully in our sleep.” 

that’s the way it is supposed to be. 

but then, in a split second, whether it’s a cancer diagnosis, a car accident, or natural disaster, something changes. and it was never supposed to be this way. so when these things do happen, “we not only must grieve the loss, we also must grieve the loss of the belief that it shouldn’t have happened at all.” 

my parents didn’t shield me from reality growing up, but the reality is, reality was pretty good. i mostly did as i was told. that is, except for 99% of my high school weekends. (side note: as those details continue to slip out, my parents become more horrified. the ol’ “time heals all wounds” doesn’t seem to be doing the trick this time. suggestions?). i was incredibly blessed that a combination of supportive parents and family, luck, and hard work brought me to here, or let’s say pre-diagnosis. while my family has had its share of lumps, especially in the past two years, my life was on a trajectory. i was supposed to have newlywed glow. i was supposed to go to iceland..and india and everywhere else. i was supposed to lead a meeting in vancouver. big and small, marvelous and mundane. now, my days are a schedule of pills, doctors, needles, and introspection (or bone pain, a bloody nose, no hair, canker sores, acne, dry skin, leg rashes, nail chips, and maybe a hemorrhoid thrown in for good measure).

now, my birthdays will be included in cancer statistics. now, having a child will become the most monitored event in history. now, every little pain or itch will become its own drama questioning metastisis. 

you can say i’m lucky to even be able to think of a life with no sign of disease, or NSD in the cancer world. i am. i know this. but i’m still grieving the loss of what my life is supposed to be. 

“in the grieving process, we also need to take time to mourn the life we were supposed to have….taking time to live with the question of ‘why me?’ for some the answer is ‘why not me? why should i be excluded from life’s losses?'” 

i shouldn’t be excluded from life’s losses. none of us are excluded. post-diagnosis (i’ve come to learn there is always a demarcation of before and after diagnosis), my belief system needs to heal and regroup as much as my body and soul. i need to rebuild a belief system. this is what the gobs of material i have from every cancer support nonprofit keep referring to as the “new normal.” my new normal must have the realities of life, living with and through cancer, but still bring me hope for the future. 

so, i’m setting off on that rebuilding project. it’s probably bigger and definitely more significant than any home renovation mike and i signed up for with our old house. we can’t learn it by watching HGTV. or reading it in a book. or even from talking with others who have gone through it. it’s our own, and ultimately my own project. 

with this blog, i don’t want my grief to emanate out like a stone in a pond, hitting you hard with each ripple. because of this and because it’s not all bad, i’m going to start a regular installment soon about what in life is NOT cancer. things i notice in my day that are delightful, quietly stunning, or smirk-inducing. we all know there are a million things like this each day that our mind just cannot comprehend because we are moving so quickly. so maybe my life, being lived at a slower and orderly pace, can help us all notice these things. 

i’ll likely never be able to repay you for your generosity to me, but this will be a start, i hope. because hope has a funny way of creeping back in. 

so, here’s to a new normal. and the infinite things in life that are not cancer -xom

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walking, although nothing is pedestrian

Posted on September 30, 2012 by meaghancc

i always have a pit my stomach on sunday nights – a weekend gone too quickly, not accomplishing everything i wanted, and re-entering the world of alarm clocks. with my diagnosis, i’m working on that, trying to treat each new week as a surprise, full of goodness and one week closer to being done with my treatment (it probably helps to eliminate the alarm clock part too, as i just wake up naturally now) (i.e., sleep-aids only last so long). so i’m writing to you this sunday night to ease that pit and reflect on the past week.

i went on a 7-mile hike yesterday with friends up Mt. Tamalpais.  the Breast Cancer Fund, a nonprofit researching environmental determinants of breast cancer, hosted the event Peak Hike. my friend rachel raised almost $1000 for the event, and it felt good to be in the fresh air with a wonderful group of people (see photo!).  the tata schwag (my new term for the onslaught of pink garb that this next month is going to bring) was particularly awesome too.  although i’m not sure what mike and our friend pat, the men among us hikers, are going to do with the breast exam cream included in the goody bag. i’ll leave it to your imagination (yes, men unfortunately get breast cancer but they probably don’t have a desire to slather some “made for women” lotion formula all over their chests). i know there are quite a few of you raising money for cancer and breast cancer this month—stephanie, donna, gabrielle, jeremy and many others.  that’s just awesome that something good can come of my diagnosis.

carrying on the topic of my last blog post, i came across a huge research endeavor that the American Cancer Society is taking on – the Cancer Prevention Study. they are looking to get 300,000 people registered in a study to understand why some people get cancer and others don’t. you can do it if you don’t have cancer, and i hope that is most of you! the time it would take you to participate in this research project now and over the next few years is less than one of my weekly infusions. i know, i’m really not trying to guilt you. this is just a brilliant effort that takes an appointment, some quick bloodwork, and a few surveys over the next few years. please forward to your friends too, and i hope it’s something you can manage to squeeze in. we’ve all been touched by cancer, and i love the idea of having it out of our lives within the next 25 years. all this research helps us get there.

in related news, i don’t have a pulmonary embolism (PE for short, according to one NP). WTF, you say? i agree. i started having chest pains monday night that were particularly bad at night or when i took a deep breath. as i was all hooked up to start my infusion on thursday, i explained this to the nurse, who immediately called the head nurse and then my ex-NP (J). the team called my cell phone to talk through my symptoms, and one of them casually dropped, “it could be a pulmonary embolism. we need to get a CT to determine that though. let me call you back in a few minutes.” cut to: me, crying.  mike, dumbfounded.  my mom, sitting patiently in the waiting room trying to act like it’s all normal as the sun rising. herceptin is a drug that can have cardio-pulmonary complications, so this is nothing to be flippant about. ultimately they ruled out the PE (yay for me!) because my chest pain seems more muscular-skeletal, and a normal, but more rare, side effect of the taxol is to have rib and sternum pain. i love having those rare-ish side effects, because they make me feel oh-so-special. yoi. it’s mostly something that a few ibuprofen take care of, but i have to be really mindful if i start to swell or cough or have sharp pains. words to live by.

living in this twilight zone of taking chemo so that cancer doesn’t kill you but knowing that the chemo complications could kill you just sucks. there’s really nothing more to elaborate on there.

so, nothing is like clockwork each week. i’m just happy i got chemo this week, so it’s one week closer to being done.

and yesterday at the hike, i got to meet in person some local survivors who have been a wonderful resource so far. a few were shocked i still had hair. one remarked that on taxol, she could not even get out of bed, even with all the meds to manage side effects (that is, until she got her medical marijuana prescription…more on that later, but we get to check out the dispensary soon.  i appreciate california in new ways every day!). so, all in all, i was feeling pretty on top of stuff, like “wow, maybe i won’t lose my hair this round and keep feeling good in general.” but yesterday in the afternoon, it’s like my hair decided it was sick of me. it started jumping ship, leaving home, abandoning its host. if i don’t wear a tight cap, it’s absolutely everywhere (oddly somehow even in my mouth) (it’s acrobatic apparently). so when mike gets home from work tonight, we are taking charge and shaving my head. that way, i won’t continue having a small to medium-sized rodent join me in the shower, i can stop leaving a trail everywhere i go, and my hair might stop tingling. yes, my hair is tingling right now.  i don’t know how it’s possible. clearly it has many talents.

luckily this week and right in time, my mom, mike and i went and got my cranial prosthesis (aka wig). a long-haired wavy beauty called strawberry syrup will make her debut soon. not every day but on days when i want to look normal and a prettier shade of strawberry blonde.

i have so many other things to catch you up on. most importantly is that whiz is fine, as i know you were all teetering on the edge of your seats with that one.

each day, i find a new way to be thankful for my diagnosis. i have to. because something happens each day that would not have otherwise happened if i didn’t have breast cancer–being in better touch with family and friends and colleagues and knowing more about your ups and downs, a stranger offering kind words when something physical gives away my disease, meeting inspiring breast cancer survivors, being more mindful of my breathing…i know you would come to that conclusion too if our places were switched.

have a good week for now. and remember kids, bald is beautiful!

xom

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p.s.

Posted on September 25, 2012 by meaghancc

i love all your fall memories!  and other memories you shared with me too.

as requested, a shot of the boots. the barn dance was perfect, even if my dancing partner could use some do-si-do practice…

xomBoots

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nerding out with the science

Posted on September 25, 2012 by meaghancc

as you know, i was really struggling with whether or not to join a clinical trial, named I-SPY2. it is evaluating the effectiveness of different drug combinations for her2+ patients. the study has 3 unblinded arms to it and hadn’t yet published results. so you knew which drugs you were getting but not too much more about how successful they are.HGTV Infusion Center Style

when my doctor first laid out treatment sans trial, my recommended protocol was to start taxol (a plant-derived traditional chemo that disrupts cells when they are dividing, ultimately resulting in cell demise) and herceptin (a targeted therapy that shuts down the receptors for the her2 protein, which my cells have too much of so have the fuel for rapid cell growth). for the trial, each study arm has taxol plus another drug–it could be herceptin or some newer, promising drug. those newer promising drugs sound, well, promising. it was definitely enticing to be on the cutting edge and think i could have a higher survival rate than the recommended protocol. but on the flip side, i could have a lower survival rate. they just don’t know, which is why these trials are so important.

because the protocol for my disease is so well-established, and the trial required additional time and invasiveness with multiple more MRIs and biopsies and would have required me to switch surgeons mid-stream, i decided not to participate. i know it was the right decision for me, but there is some lingering…regret? confusion? annoyance that we lack perfect information and don’t live in black and white? probably all of the above.

so, i’ve been doing a ton of internet and waiting room flyer sleuthing on other clinical trials or studies to join, greatly aided by breastcancertrials.org. the studies i qualify for range from ovarian function after treatment and sleep problems during chemo, to heart damage on herceptin, preventing lymphadema, managing fear of reoccurence, building an online community for emotional support, and novel genetics in young women.

i’m enrolled in 3 different studies now, and the coolest one is around genetics and trying to understand all the genes that might contribute to why young women (me) get really aggressive breast cancer (also me). my parents get to join in the fun too and provide blood samples. the study is even close to home for them and based out of my dad’s oncologist institution at washington university and the siteman center. yes, we calcari’s are what dreams are made of–becoming lab rats together! an oncologist’s dream!

a co-worker/genius who used to consult for mckinsey worked with the man, dr. von hoff, who helped get the taxol alkalines to a form that patients could accept. she shared a beautiful story with me that breathes life into the research community and that they are more than nerdy lab coats or big pharma penny pinching their way to profits. when my colleague was working with dr. von hoff, she was clued into something in his office that only he, from the vantage point sitting in his desk, could see. above his door, there was a sign that read: cancer doesn’t sleep so neither should we. (he really meant it. he literally only sleeps 3 hours a night). he believes that we can wipe out all cancers in the next 25 years. and his daily research is helping that march towards what i hope becomes reality. as my co-worker said, she thinks of him often, and it provides a reminder to keep your (my) eyes on what you’re (i’m) trying to accomplish and not get distracted by the day to day burden of getting there (her words, not mine).

so, that’s where i sit today. little stories and snippets like this really mean something, and that is what is motivating me to get more involved in the research too.

take care and thanks for your continued check-ins. i’ve received some pretty incredible toddler artwork this week (noah and levi!) – there are some budding picassos in the blog circular, i’m happy to say.  keep on keepin’ on.

xom

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