drain down, drain down.

we have a lot of updates, so this is a very newsy post. i feel like a reporter.

3 weeks out of surgery, i got another fill up of the expander (kind of like a gas tank. fill ‘er up!). the needle slightly hurt going in today. maybe a sign i’m getting some nerves back. and, i finally got rid of my second drain. it’s a weight lifted, literally. i lost a little over 2 pounds, which doesn’t sound like a lot, but when it’s 2 pounds swinging from a tube coming out of your torso, it feels damn good. my fluid output wasn’t technically low enough (needs to be below 30 each day, and it was hovering around 35 the past few days), but my surgeon really wanted it gone. so we have to continue watching for oozing and infection, and to be careful with the hole that remains in my torso (although the surgeon said, “oh, that should close up pretty quickly.” note to self: the body is still an amazing thing, even if i was mad at mine much of the last 7 months) (also, for any readers who may have to get drains in the future, the fluid output and emptying the drains 2x/day is gross, but not as gross as anticipated. probably more annoying than anything to pin them to your clothes and figure out a good sleep position and hide them from the public eye under puffy vests. the output is an orangish clear liquid, and they provide you with a cup to dump it into and measure, before disposing of it. the doctor keeps gauze over the hole where the tube comes out too, so it’s not too sci-fi to see it directly exiting your body.). mike laughed while watching the doctor pull out the drain tube – he said it was like a magic trick where the magician keeps pulling scarves out of the hat and the scarves just keep going. ew.
and in other ‘ew’ news, i get to shower tomorrow. sponge baths are sure getting old. man, the feeling of hot water hitting my head and shoulders is going to be amazing. if there was a doubt california was in a drought, it’s going to be 100% certain after my shower tomorrow.

we also checked in on my ovaries this week. and they are looking a-ok. incredible even. although that last description, when coming from the male fertility doctor, really bothers mike. especially when said during a vaginal ultrasound. there are some good signs (follicles? cells? hormone levels? dunno.) i’ll get ovarian function back, and now the long-term question is how much will come back (like, will just one ovary work? will it only work 33% of the time?). my oncologist and fertility doctor both agreed that i won’t need ovarian suppression. this is based on the tiny amount of invasive cancer i had left at surgery. i’m very happy about this. cheers to avoiding monthly shots and more side effects that take away my estrogen, a hormone which helps all sorts of things like joint lubrication and memory and being aliveness but is a delectable treat for my cancer cells! joking aside, my oncologist takes the most aggressive approach to everything, so if there’s even a slim chance it would help, she’d sign me up. onward, dear ovaries.

the last piece of good news we got was from my radiation oncologist. it’s good news but confusing news. she was so excited about my surgical pathology and the positive treatment response that now she’s uncertain radiation is necessary. she concluded that most radiation oncologists would recommend it, given my young age and to take an aggressive approach. so she will too. but it stumped her, like no-pope-black-smoke stumping. well, stumped her and excited her. it is good news, yes, but as it’s set in, i’m confused too and have started a list of questions for her. no one wants to be the guinea pig and not do the radiation, so we don’t really have statistics to fall back on for the alternative.

in a way that was similar to the mastectomy versus lumpectomy turmoil, i have to think in hypotheticals: if i have a metastasis in 5 years, would i look back and think i should have done the radiation? maybe it will be overkill. but, maybe it will complicate and cause my breast reconstruction to fail leaving me with a concave side. call me shallow but no one wants that. i get mad at the imperfections here. and some moments (fleeting moments), get lulled back into this false complacency that i’m fine now, cancer free, no chance of anything bad ever happening ever again in life, all stocked up on shitty things thankyouverymuch! that whole “i’m invincible” and “i’m young and healthy and resilient” and “maybe i never even had cancer to begin with” kind of thinking. frankly, it’s a defense mechanism for making it through the day and not being absolutely overwhelmed that there are a ZILLION things that could go wrong every moment of every day. but if we really fully recognized and processed this fact, we wouldn’t come out of under the bed (or in SF, we probably wouldn’t go under the bed but somewhere else safe from earthquakes). jeez. i’ll keep working this through with my care team.

even though i’m not working this month, our calendars are full. i started physical therapy last week to get range of motion and strength back in my arm. i’m at 150 degrees with a goal to be at 180. they are making sure my chest doesn’t fully curve into itself after surgery, and taught me how to drain my arm since removing lymph nodes took a lot of that natural drainage away. julie wong is the PT person, a breast cancer survivor herself. she had a change of career after diagnosis when she realized there were so few resources to help women get back to their quality of life. i’m fascinated by how pressure on various points of the body can help so much. they massage my gut to reactivate the digestive tract after chemo/surgery; my pectoral muscle to shift it down on top of the expander; and my whole chest to help smooth out scarring. sounds intimate, but it all feels pretty normal. and super good.

the few days following PT though, i am exhausted. like exhausted in a bone tired way that i never really had during chemo. i can’t shake it either. it smacks me that maybe it’s all finally catching up, physically and emotionally. i wish my time off were spent on all these wonderful things i’ve always said, “if i had a month off, i would [insert fabulous adventure here].” but i’m not doing them because i’m just…tired.

my hair is starting to come in, as you can sort of tell in the picture (mike wanted to get fancy for the portrait). he thinks, from a distance, i still look bald, but up close, it’s a tie between an old man and a baby. he’s pretty accurate. with eyebrows and eyelashes making a reappearance, i’m starting to feel more human, less cancer patient.

my parents are settled back in Illinois now, and they were an extraordinary help. doing all kinds of odd jobs – beyond the laundry, dishes, and cooking, things like patching up holes in our house, sewing a christmas tree skirt, widdling us a coat rack from reclaimed fence wood. standard stuff, you know. kind of amazing when it all adds up. so thanks #1 mom and dad. whiz misses you too.

a lot of newsy bits. yadda yadda yadda.

i’ve been wondering when i get to say i’m cancer free. my care team hasn’t mentioned it yet and won’t, it seems (the fertility doctor and my nurse practitioner both said something like, “yeah, let’s see how this next year goes for you.” it was in reference to the kid thing, like maybe we’d get the green light if i don’t have a reoccurrence or metastasis in the next 2-3 years). i don’t think i have cancer any more. but who can truly say that? who knows if i have a cluster of cancer cells hanging out, or others just waiting to mutate? am i a cancer ‘survivor’ yet? i’ll be in active treatment for at least another 5-6 years, and possibly up to 10 if the long-term tamoxifen pill studies play out this way, but technically i’m alive so surviving…? there are no right answers, so like many things, the decision will be up to others but also up to me.

thanks for still being here and helping me work through it.

xom

and ps, andrea, welcome home from the hospital!!!

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kidlets

i have a lot of time on my hands now, which is both good and bad. good that i’m starting to process a lot of what we’ve been through, whereas it otherwise feels i’ve mostly been levitating above the experience. bad that i can get a little mad. which actually is not bad, but natural.

children, babies, kids, etc tend to be on my mind a lot. not so much around wanting them, but they are just present. maybe it’s because our nephew jonathan turned 6 yesterday and niece brecken is turning 9 today. i also looked back over the past few weeks and realized there were quite a few more welcomes to the world to offer up: evelyn to brian and clare; ann monroe to mary and eric; joseph to susan and joe; and chocorua to jill and jason. a quick count adds up 9 other friends who are going to have a brand new baby in the house over the next few months. it’s the time in our lives when this is, and should be, happening. and, i couldn’t be more happy to see friends become parents, especially when it’s something many have wanted for a long time and identify with, to see the miracle of a baby being born, to feel as though these new little people have always been part of our lives in some way yet simultaneously be amazed that they are immediately in the mix of the world. it is, simply, cool.

the jury was still out for mike and i on whether or not to become parents one day. i never grew up dreaming about becoming a mother. mike always saw himself as a dad, coach, mentor. i love kids though and taught and tutored middle schoolers through and after college; mike did similar things too. childbirth freaks me out (despite the millennia of it happening) and have always been open to adoption; mike was never sold on adoption solely. we both find kids clever and cute and hilarious (like jonathan, pictured here, and his insistence on wearing a tie to school for his birthday to look handsome).

when i shared our perspective on kids ~5 years ago with our friend mike visiting from portland, he said something sarcastic like, “yeah, good work. way to give back to society. it’s not like 2 smart people could have a smart kid that could do something amazing one day, like cure cancer.” that comment has so many layers i can’t even touch it.

something that i never realized, until now, about cancer in young adults or children is that chemotherapy risks taking away fertility, because chemo targets rapidly dividing cells, like some of those in my ovaries that surround my eggs. my heart breaks for so many kids–in the true sense of the word–who become infertile even before they have their first girlfriend or boyfriend.

when we got my diagnosis, it was one of the first things asked of us: do you have children? do you want them? um…what? we were too busy wondering if i was going to live to think about that kind of future. when we mentioned adoption, one doctor said we might not be a “good adoptive family,” now given my health history. once we were told my prognosis is good, then the wheels really started going. do we preserve our options as an insurance policy, on the chance that the chemo permanently shuts down my ovaries? do i have time, in the most literal sense of the word, to go through a few weeks of daily hormone shots and the egg harvest? will those hormone shots speed up my cancer growth? oh, and do we want kids? (side note: hearing things from acquaintances after diagnosis like, “thank god you don’t have children!” actually sucked. whose to say it wouldn’t be a blessing to have children as a beacon to keep a person going through all these treatments? i try not to preach from a blog pulpit but that one really got me, even as a person who wasn’t sure about the kid thing).

we agonized over this decision. no one could make it for us. we met with a special fertility psychologist at UCSF and asked all sorts of questions.
Q: why wouldn’t someone freeze embryos? A: for financial or religious reasons, beyond not wanting children.
Q: why does it feel a little dirty to put a price tag on future options and shell out $14,000 to preserve embryos (and that including a 50% off special for cancer patients!) A: you didn’t ask for this.
Q: what happens if i die before we use the embryos? if mike dies? A: you have to confirm and decide that now, signing it in legal paperwork. the surviving partner could still use them, you could donate them to another couple, or destroy them (this one caused, as you can imagine, a lot of discussion. would mike want our child, through a surrogate, without me and vice versa? we have different opinions on it. i would, he would not. or at least that’s what we concluded in august. i frankly can’t recall what else we decided. to us, destroying them doesn’t feel awesome, but knowing that our biological child is out there being raised by another couple, beyond the amazingness of fulfilling someone’s dream, is also upsetting).
Q: what if my ovarian function returns? A: we would want you to try and have a natural baby, having you go off cancer treatment/the pill tamoxifen for a few months. if that doesn’t work, we’d implant the embryo (or embryos…our doctor said don’t worry, no octomom in our future. twins at 40 doesn’t sound particularly energizing anyway. but, we’d cross that bridge on how many to implant if/when we get there. and then figure out what to do with the rest of the embryos).
this is heavy stuff for anyone, yet alone a couple who just was wrapping up celebrating their first year anniversary in marriage. we decided to go for it and figure the rest out later, also recognizing that we were unlikely to do something without doing something (if that makes sense–like, if we’re going to freeze embryos, we’re going to use them dammit!). we had time, but not a ton of time, to make the decision. so after what was not an awesome 2 weeks of shots and the egg harvest surgery and fertilization procedure, 11 totsicles (er, fertilized embryos) remain on ice somewhere in an earthquake-retrofitted building (i had to ask) in SF. i’ll repeat, mike is fertile and his swimmers did the fertilization part just fine. as any guy would, he’ll be happy to hear that again and again (given our 11 potential kidlets, i entertained the idea of getting mike 11 one-sies or stockings for the mantel for christmas but thought a case of wine was even better this year).

today’s onion headline, “obnoxious friend won’t stop attaining major life milestones,” cracked me up and spurred this post. what all this adds up to, and why i’m sharing it, is that i’m mad. mad at stupid cancer. and especially mad at stupid cancer in young people. even though mike and i know we would not be having children now or in the next few years had i not been diagnosed, we don’t even have the option to have children right now (end emphasis). it would be against medical advice. we have to wait a few years and see how my treatment continues to go. bottom line is: you always want what you can’t have. grass is greener. etc etc etc. or, cancer sucks.

by sharing this, i don’t want friends to avoid us or avoid sharing their happiness. of the things that are certain: mike and i remain steadfast in our happiness, excitement, and support for all of our friends who are moving to this life step, so please keep sharing the good news with us.

i just wanted to share some perspective on this whole fertility thing that is growing in recognition in the medical field but among a patient’s social support, isn’t necessarily widely known.

in other updates, i got my expander filled today for the first time. it’s pretty amazing – the doctor uses a little magnet to find the matching magnet/entry point of the expander inside my breast. he inserts a needle through the magnet and slowly injects whatever amount of saline is appropriate for the day (today was 50cc). because all the nerve endings in my breast are shot for good, i didn’t feel the needle go in. i did, however, feel the liquid stretching out the expander, thereby stretching my pectoral muscle on top of it. and looking down, my boob has grown. it’s like the turkey is almost done! it’s like he watered my boob (thanks for that image, matt)! science! as the saline flowed in, mike and the doctor chatted about their membership at the olympic club, golfing rounds, and the like. totally normal wednesday.

even though reconstruction is far from over and there are a lot of risks still left to navigate, i’m glad i’m doing it. i am bothered by how flat one side of my chest is, both with and without clothes on. i have images of my grandma GG who didn’t do reconstruction and didn’t wear a prosthesis in her bra (everyone has reasons to or not to…hers likely being that she was 80 and facing a lot of other treatments for stage iv cancer. oh the things i wish i could talk to her about now). my grandma nana didn’t do reconstruction either but she wore her prosthesis so things were balanced.

one. day. at. a. time.

thanks for listening in today…and what feels like every day really.

xom

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ps – belated happy valentine’s day love

before valentines day is too distant of a memory, i want to share some letters from st. michael’s kindergarten class. a continued source of gems. and smiles (and i agree improvement throughout the year – so fun to see the progress!). today i want them to go to my friend andrea who is in the middle of chemo, hopefully rounding her own bend soon and coming home from the hospital where she’s fighting infection. please be thinking of her. the chemo drugs are scary strong, but the amazing body can be stronger, with some time, antibiotics, humor and love.

andrea, here is some love transferred on to you!
xom

Dear Mrs.. Meaghan,
I love you! I hope you have a happy Valentine’s Day! I can’t wait!
Love,
Samantha

Dear Mrs. Meaghan,
My daddy has a flower shop that might make you feel better. I can’t wait to give my class my Valentines.
Love,
Karleigh

Dear Mrs. Meaghan,
I hope you are having a s good day! I’m excited about Valentine’s Day! Are you? Take care of yourself.
Love,
Aaron

Dear Mrs. Meaghan,
I hope you having a great VAlentine’s Day! I really like candy. I think candy can make you feel better.
Love,
Ashton

Dear Mrs. Meaghan,
I hope you have a good time on Valentine’s Day! I hope you get good Valentine’s. I’m excited for it
Love,
Priya

Dear Mrs. Meaghan,
I have treat bags for the kids in my class. Do you get Valentine’s? It is fun! I hope my card makes you feel good.
Love,
Ava

Dear Mrs. Meaghan,
I hope you are feeling weller! Do you love Valentine’s Day? I do. I want lots of candy I hope!
Love,
Nathan

Dear Mrs. Meaghan,
Does Valentine candy make you feel better? I have to make my Valentines when my mommy says I can.
Love,
Matthew

Dear Mrs. Meaghan,
I hope you have a good time spending Valentine’s Day! I still have to make mine for school. Get better quick!
Love,
Olivia

PPS and a few choice knock knock jokes sent from some grade schoolers right in the nick of time for my own hospital stay.
Knock Knock
Who’s there?
Madam
Madam who?
Madam foot got caught in the door!

Knock Knock
Who’s there?
Roach
Roach who?
Roach you a letter, did you get it???

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hiya

i’m still here. i’m feeling stronger each day after surgery and am starting to ramp down pain meds. i’ve been waiting to post an update until after we received my final surgical pathology report. posting before then felt like jinxing it. the path report was largely positive, and my doctors are pleased. the highlights being: my margins are negative, meaning they got all the cancer with room to spare. and my sentinel node, or the node they’d expect to be positive, was also negative.

they ended up removing 8 lymph nodes. in 1 of the lymph nodes, there was a micro metastatic cluster of invasive cancer cells left. that means there were just a few cells and they only measured .2cm; they don’t even classify the node as positive for cancer. along with the DCIS or cancer still in the duct that we knew about, they also found a benign cyst called fibroadenoma.

this is all really good news and shows i responded well to chemo (some people have large tumors left after doing chemo first). but, i can’t help but fixate on those few darned cells, why they were lingering, why the chemo didn’t kill them, or why perhaps they grew after i was done with chemo and what else is growing where else in my body (and whether the more than 1 glass of red wine a week i enjoyed contributed to it, etc etc). and i’m also really sad about my increased lifetime risk for lymphadema. taking more than 5 lymph nodes is where the risk goes up significantly. lymphadema is short-term or permanent swelling of the arm. it can be triggered by a cut, sunburn, or other trauma to the arm or hand that causes the lymphatic system to flood the arm with fluid–like it’s supposed to–but with fewer nodes to filter out the fluid, the arm swells. at the first sign of this, i’m to head to the clinic for help massaging the fluid back up my arm. i’ll have to wear a compression sleeve to fly and may even need it when exercising. i’ll join a support group around this to continue educating myself on how to avoid it too. one more group of women i had hoped to never have to meet in my life.

back to surgery…i was overprepared. a total preference. that being said, when i was being wheeled away into the OR, i was terrified. and sad. as much as i thought i’d want to be rid of my breast and prepped myself to think that way, i really wasn’t. it was hard knowing my body would never be the same. of course the doctors and nurses were stellar and professional, and that helped (and thanks to michael and monica for preparing me with the right ideas and questions for the anesthesiologist; i didn’t have any nausea, and the insane itches i had from the IV drugs finally subsided with another medication). and having mike and my parents there waiting afterwards helped. and knowing that you all have been sending me positive energy helped.

the surgery is hard physically. getting up and down without using one side of my body is tricky. finding a good spot for the surgical drains so that the tubes embedded somewhere in my abdomen don’t pull is uncomfortable (and the dinky safety pin they give us to attach the grenade-shaped drains that are collecting post-op fluid to my shirt really isn’t cutting it). laughing or taking a big bite and feeling the expander underneath my pectoral muscle shift is out-of-body. pain, burning, and numbness still shoot and radiate in my breast, arm and upper back; this is likely to continue for awhile and could for a very long time.

it’s also hard psychologically. i sit in the bathtub looking down at what used to be my breast, but is now a series of incisions and an oddly shaped expander. maimed is the only word that comes to mind. even if the plastic surgeon says that everything looks good and as expected, it still isn’t pretty.

maybe i’m cranky because i can’t shower for 2 weeks. however, i’m learning that sponge baths are underrated–think of all the water and time i’ve saving. and at least washing my hair isn’t an issue!

unexpectedly to me, i haven’t been couch or bed-bound, probably because the weather in SF has been spectacular. i spend a lot of time reading in the backyard or creating more DIY or house projects for my parents to do or smelling the beautiful flowers / reading the thoughtful cards you’ve sent / spending quality time with visitors. i’ve been moving my arm and hand a ton to start work on getting full range of motion back; i was really surprised that i could even move my arm after surgery. that’s been a bonus and a realization that there are certain things/questions we avoided asking pre-surgery for fear of the answer. i will wait another 3 weeks before lifting, starting PT, and driving, as they don’t want the surgical glue that is holding me all together to split. i kind of don’t either.

to close out, i’ll share my first experience with a bedpan. maybe all of you educated folks out there know how bedpans work. i had no idea. here’s the secret: it’s a pan, placed on the bed, underneath your butt. it’s supposed to be totally convenient, especially late at night when i couldn’t get up to use the bathroom, given all the contraptions i was dialed into: the IV for pain meds, antiobiotics and fluids, and the compression socks and inflatable machines around my legs that alternatingly squeezed them to keep circulation going. the biggest lesson learned on bedpans – make sure your bed is totally flattened, otherwise, the bedpan will tilt and pee will run. especially if you’re hanging out over the bedpan for a few minutes while your nurse is busy doing something else. warm pee up the back at 10pm on a tuesday isn’t recommended. flash to a whole production of getting me and the bed cleaned up, me telling a lot of lame bedpan jokes, and mike being horrified that i was then sitting in the chair he was going to be sleeping on.

all modesty in this process is out the window. i didn’t wear underwear in the hospital for 2 days. and you know what, i don’t even care.

thanks again to everyone for checking in on us. i know you all have tons of things–both good and bad–going on in your own lives, so that you take time and think about us is deeply meaningful. and thank you for supporting mike and my parents too. maybe mike will keep guest blogging on here, since he loves entertaining the crowd (i’m sure he has a lot of fresh material considering things like drain cleaning, hair growth, living with in-laws, having your wife off work for a month, etc). i’ll get my final drain out next week and start getting the weekly saline injections into the expander to inflate it. radiation should start after the expander is filled/sized to essentially match my other breast, probably in late april. i’ll still get my herceptin infusions every 3 weeks until november or so. and life will continue moving forward, as it tends to do, sometimes surprisingly, each day for all of us.

xom

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Home is…where the drains are…

Hi all,

Just a quick post as the night comes to a close. Meaghan was discharged this afternoon after considering staying another night at the hospital. Her surgeon suggested she would be most comfortable at home without all of the hustle and bustle of the hospital, so we made the trip home at about 5pm. A long 36 hours, but it’s hard to believe it was only 36 hours. Meaghan is of course sore and getting over the shock to the system that is a major surgery. She has been resting comfortably here at home and hopefully will get lots of uninterrupted sleep tonight.

Today she moved around pretty well and kept her blood flowing. As you all know, she is pretty darn tough and these past couple of days proved it all over again. She never ceases to amaze me with her strength and dignity (and hair growth ability). You should see her making small talk with the nurses and asking them about their day and their lives – all when she is dealing with this mess.

There will be more updates to follow and I’m sure Meaghan will scare up the energy to post at some point. She just won’t have full range of movement for the next 2 weeks or so due to the drains that she has to lug around as her surgery area heals. Not fun, but hopefully they will become a minor nuisance soon.

The last 2 days had so many things happen they could be their own book (hopefully written by Meaghan some day). To give you a flavor for what these days have been like, here are a few sample chapter titles that Meg may want to consider:

  1. Mastectomies and other things you can get for $10 (copays)
  2. Yes, I know I don’t have pants on and no, I don’t care who sees at this point
  3. A River Runs Through It and Other Tragic Tales of Bedpan Mishaps
  4. It’s 3am I must be lonely (so I will take my IV out) – Matchbox 20 remix
  5. Casual conversation over a 4am IV hookup
  6. The ol’ ball and drains
  7. Hey nutbag in room 316A, we ALL know your “F*cking Thumb is eating itself”
  8. The Scrabble Improving Powers of Mastectomy Surgery

As they say in the business, those are some teasers for you all.

Thanks so much for all of the support over the last couple of days. Keep the posts, emails, texts, and calls coming. But please mind our time zone. I promise you Meaghan has read/will read them all. We may not get back to every one right away, but know they are cherished. Meaghan will be somewhat captive in the house over the next couple of weeks and she is taking some time away from work for a bit. So if you are in the area and want to stop by for a visit or take a short walk, send Meg a text or call and she can let you know what she is up to. You’ll also get the pleasure of spending time with Meaghan’s parents, so there’s an added bonus. They of course have been and will be a great help.

Until next time, “semper ubi sub ubi.”

mpc

Posted in Dispatch from the Lesser Half | Leave a comment

Surgery over!

Hi all – This is Mike reporting from Room 317 (and the IV nurse was Irish and her anesthesiologist was named Murphy…coincidence?) Meaghan has been out of surgery since about 11:30am. She is doing very well so far and her surgeons were pleased with how things went. So we are very happy about that. Her mastectomy went smoothly and the sentinel node biopsy came back negative, which is really great. The cancer surgeon only had to take a “few” nodes that had some scaring, which she said is normal (and much better than taking lots of lymph nodes). The plastic surgeon had no complications on his portion and he was upbeat. We were able to see Meaghan about an hour later and she was surprisingly coherent, especially compared to the two other times she had surgery. She has not had any nausea and has been drinking and munching on crackers already. So while the next few days and weeks will be tough, things are off to a good start and it’s a big relief to get past this milestone. A brief play by play of our day: 5:00am: Alarm goes off. Holy crap it’s surgery day 6:00am: Arrive at hospital and get admitted. We are apparently fortunate that Meg’s copay to lose a boob is $10. Shouldn’t they be paying us? 6:15am: Prep for surgery with intake nurse and IV nurse. We learn that Meg is slightly anemic from the labs she had taken on Saturday. Not uncommon after chemo. 7:00: Meet anesthesiologist. Meg blows him away with her questions. We know way too much about anti-nausea drugs. 7:15: Prep meeting with plastic surgeon. He takes this opportunity to draw all over Meaghan’s chest with a Sharpie. 7:25: Prep meeting with cancer surgeon. She’s ready to rock. 7:30: Mike gets booted to waiting room and then Meaghan is rolled off to surgery. 7:30-11:15-Meaghan has let us all down here. She doesn’t remember anything. Although she does recall the song “Californication” was playing when she was rolled in. Odd choice. Or odd memory. 11:30: We get to see Meaghan. First words out of her mouth are “It’s over.” Good assessment and happily true. 11:30-present: We are taken to a temp room while we waited for Room 317 to be ready. Meg just had her first bedpan experience. Let’s hope she doesn’t get used to it. Thanks to all of you for the kind messages you have posted here and for all of the texts we have received today. We definitely feel the love, as do Meaghan’s parents who are also here. More updates to come tomorrow after we get Meaghan home (hopefully). mpc

Posted in Dispatch from the Lesser Half | Leave a comment

goodbye…and hello

i have surgery on tuesday. at 730am i’ll go under, and they’ll remove my breast, replacing it with a plastic expander that i will have for up to a year after radiation, until my skin is healed enough for the final implant. they’ll remove as many lymph nodes as makes sense given analysis of invasive cancer during the procedure, and if i’m lucky, my skin and nipple will be spared. i’ll lose all feeling in the breast no matter what. i’ll be in the hospital for 1-2 nights and come home with surgical drains, pain meds, and a lot of instructions on not lifting/bathing/doing much.

just the facts.

surgery is scary, and shifting from a set schedule with weekly chemo to an unknown schedule that all depends on how the procedure goes and how i’m healing is tough. it’s also adding the idea of pain into the mix of still-chronic side effects of chemo (read: most all bodily functions). it’s been my last week of work until april, and in my busy-ness to get everything done, i’ve been pretty successful at blocking all the scariness out and when asked, being able to be very clinical about it all (x is happening, then y, then z). but fear is definitely there, lurking in the corners of my mind, mike’s mind. our dry run to the hospital for my bloodwork today prompted some serious calcari-sweathands.

the regular parade of doctors appointments continues (one including a bone density scan to see if i’m osteoparitic, a common side effect of chemo and especially in young women…stay tuned on what other characteristics make me 90 years old). i also restarted the herceptin, the targeted therapy, infusions that are to happen now every 3 weeks to round out a full year of getting that drug. it was a romantic valentine’s day in the infusion center. i’ve been trying a bunch of homeopathic remedies to get my core biopsy bruises and contusions to go away, but they persist. my therapist made me a guided imagery cd that they will let me take into surgery, so i’ve been playing that to imagine what a good outcome will be and how to continue trusting the team of doctors who are also invested in my outcome. and then, i’m trying not to beat myself up on what other things i should be/should have been doing all this time to get ready for surgery, like some hard core stretching and iron eating and water drinking. oh, and i just picked up latisse to hopefully help sprout some eyelashes so i look and feel less like a cancer patient (don’t get me started on my reverse soul patch on the back of my head, where a band of hair is showing up strong…and alone).

all this stuff happens and we try and detach from it and lead a normal life, with dinners with friends, snowshoeing in tahoe (such a wonderful mastectamoon to be away with good people and scenery, helping shift our energy completely), and drinks with my hairdresser at the lookout…you know, a normal tuesday night kind of thing.

mike will keep you posted on how surgery goes, and once we’re home and figure out what end is up, we’ll update the mealtrain with things like walks/meals/etc. in the meantime, 2 favors from the crowd:

  1. please continue to send your good vibes, prayers, and thoughts my way, especially so tuesday morning. i’ll be thinking of all of you as my immune system.
  2. if you have some funny youtube clip or other link, please email them to maureen (maureengeesey@gmail.com) by monday, who is going to compile and send them to us for my stay in the hospital. laughter is good medicine.

the picture attached to the post is a mural outside of our house. we had it commissioned by an awesome woman, meagan. she sketched it after talking with me for awhile in the fall. it’s a wall full of flowers and butterflies….butterflies who undergo a transformation. a goodbye and hello. sort of like me and what i’m going through.

a couple other goodbyes and hellos go to meredith who is en route to phoenix and wee joe who was born to joe and susan + freya who was born to dan and kristin – much love to you all.

i look forward to reconnecting in a few days. until then – i’m sending you all some of SF sunshine.

xoxo

m

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pop goes…

the core biopsy machine!

my breast gained 2 more titanium biopsy markers and some bruises on thursday. in fact it’s super swollen and the color of eggplant still today, with the steri-strips caked on. all completely normal, but all completely BS IMHO.

the second opinion surgeon called at 10pm last night with the biopsy results (my doctors work crazy hours, which is both awesome and depressing). it turns out the distant calcifications sampled are cancer in the duct (DCIS) along with plain calcifications. my decision is made: single mastectomy with reconstruction.

the good news is that based on the tissue sampled, it appears the invasive cancer is gone. that means the chemo took care of the nastiest and most aggressive of the diagnosis, and according to the doctor, this is the best indicator we have for long-term survival. we’ll wait until the final pathology comes back from surgery to confirm this, but i’ll take a good news nugget for now. and since DCIS does not contain rapidly dividing cells, the chemo isn’t meant to kill it anyway.

thanks for all your support with this. straight up, i’m thankful the decision was made for me (on many levels, including the one where chemo has knocked the wind out of my decision-making sails writ large: what do i eat for dinner? dunno. which route do i take to my appointment? dunno. black yoga pants or black yoga pants? dunno.).

even though this piece of information was critical to the decision, i had to be talked into the core biopsy in the end by the surgeon. i wasn’t up for another invasive procedure, and by thursday morning, was leaning towards a mastectomy anyway. i also remember a woman telling me that the biopsies were worse than surgery for her, because you’re awake, nervous, and uncomfortable, if not in pain. you also can’t lift a gallon of milk for a few days afterwards and should limit activities for a week (e.g., no yoga). the surgeon convinced me with some cheesy line of “information is power” and used my name “information is power, meaghan.” i’m a sucker for that pithy and direct approach.

to tell you a bit about the core biopsy (disclaimer: all of this, as you know, is my experience. it doesn’t mean you would ever experience the same thing, so i don’t want to alarm anyone). it’s different than a fine need aspiration, which was the ultrasounded-guided biopsy i had when first diagnosed; that takes a handful of cells. the core biopsy is guided by a mammogram and takes tissue. so picture this: me (bald still, of course), laying face down on a table elevated to the ceiling, with my right breast dangling through a small square hole, compressed like a pancake in a mammogram machine for 2 hours, while a needle first gives local anesthetic and then goes in and out taking tissue samples and making vaccuum cleaner sounds, before making a popping noise when it inserts the little biopsy clip. all while i am to lay perfectly still. sure, the doctors were sweet and one even rubbed my back around minute 72. but holy shit that was uncomfortable and painful and alarming all at once.

when one of the doctors was holding my breast afterwards for ~15 mins to minimize bleeding, we got to know each other pretty well (i have zero dignity and/or privacy any more about my breasts…it comes with the territory). she was asking if what they said about the core biopsy being “uncomfortable” was accurate. um, yes. she was also surprised to learn it’s incredibly painful. in school and residency, they learn the bicarbonate in the anesthetic is supposed to minimize stinging (it didn’t) and that the anesthetic itself will totally numb everything (it doesn’t). not that i wish this procedure on her or anyone, but i do wish the doctors would know what their procedures feel like (my first opinion surgeon said clearly the whole contraption was designed by a man. agreed). even laying all contorted on the table and having the compression is damn uncomfortable. the lady before me had to cancel her procedure because she couldn’t even take the table part shoving up on her sternum (i got this tidbit when they told me what a good patient i was and i asked what a bad patient would be).

when they told mike it would be at least 2 hours and i got a hospital-grade wristband, i knew i was in for something. not my idea of an awesome afternoon. i was pretty unprepared for it and had planned this whole awesome and active weekend to celebrate being 2 weeks out of chemo and turning a corner physcially. instead, i came home with puncture wounds, gauze, ice packs, and an ace bandage around my torso.

i got mad. like really mad. like fuming and crying and snotty. and decided i wasn’t going to let cancer take away my weekend, because it’s already taken away so much else.

fuck. that. shit. (sorry mom and dad, but sometimes it really has to be said).

so i got a fancy dinner out, champagne at the top of the mark, dirty in a mudrun, our yard spiffed up, goldenboy pizza after more champagne at gino and carlo, and superbowl sweetness in the east bay, all with mike, friends, and cancer survivors (thanks for all the fun, y’all) (treat yo’self!!!). at the mudrun with BAYS, we danced and laughed and threw mud and did all the obstacles. the dude controlling the run’s heats asked if there were any cancer survivors in the crowd, and it was my first big public moment at identifying with this and being totally happy about it and screaming like a teenager (the dude was also super cute, so that helped….sorry, mike). sure i was ace bandaged up and sore, but feeling alive again counts for something way more.

as my dad says, that’s the scoop boop.

one thing about this blog that delights and fascinates me to no end is that so much of my world is here. i am lucky to know all of you–from respected colleagues and partners to new cancer survivor friends, university roommates, high school coaches, and childhood and SF playmates. it’s kind of like the biggest wedding ever, if that makes sense. i hope you get as much enjoyment from each other’s posts as i get from them.

i also have so much to process and share that i miss the blog when i don’t post regularly. that’s probably saying many things, but mostly how helpful it is for me to have you all here.

i started surgery prep already today and am in the process of saying goodbye to my right breast. while it betrayed me in so many ways, i like to think of it apologizing at how it got confused and it messed up, for reasons that we will never understand. and it’s time for it to leave me and for me to let it go. while that may be too woo-woo for some of you, it has real depth for me and is helping me grapple with a permanent physical transformation. february 19 is the big day. we’re going to tahoe this weekend with friends to celebrate being done with chemo and to enjoy a mastectamoon (thanks, sarah–brilliant). then back and ready to keep gaining a distance from chemo and a closeness to being done with another big step.

see you again soon,
xoxo
m

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one lump or two?

to lump or not to lump? so many bad puns. but it’s more fun coming up with bad puns than it is figuring out whether i want to, or am ready to, lose a breast permanently. or navigating the various doctors’ opinions whose job is it to figure out whether or not i need to.

we had a second opinion with a UCSF surgeon and appointment with a radiation oncologist last week. we learned a lot, and unsurprisingly, we still don’t have a clear plan for my surgery on february 19 (spoiler alert of this whole entire post). we do know i will need 5 weeks of radiation, going in each monday through friday during that time for some beam-age.

chemo is an systemic treatment that treats the overall person and rapidly-dividing cancer cells, and radiation and surgery are the more localized parts of treatment. surgery has traditionally been done first, but in some cases the field may be moving to the approach we took for me.

because the cancer was in my lymph nodes, radiation will be important even if those nodes are removed in surgery and no matter what surgery i have. i was disheartened to learn this, because it’s another round of crap that makes you tired, makes your skin get weirdly burned, makes you go into the doctor every day, and makes you at risk for more cancers in the future. also, the radiation oncologist–she’s awesome, although very conservative in her approach, which is conservative to save lives–was focusing on the cancer in the lymph nodes under my arm and one in my central chest. the lymph node in my central chest was something mentioned to us after the PET scan only once and a long time ago. the last MRI showed no cancer there, but i was bummed to do the math on the cancer being mostly on the right side of my breast and spreading into the armpit lymph nodes, and wonder how it jumped to the center of my chest. believe me, that kind of shit really gets up in your head (e.g., how and where else did it jump?). the radiation will also treat the chest wall and skin to help reduce chances of local reoccurrence.

on surgery, it’s more complicated. here’s the skinny:
my first surgeon strongly recommends a mastectomy with radiation and reconstruction. i have a long life to live, so we should take the most aggressive approach to lower my chances of local reoccurrence as much as possible.
the second surgeon leans toward breast conservation with a lumpectomy, suggesting that i could have a mastectomy at any point if needed. why should i lose a breast if i don’t have? if i get the mastectomy and the pathology comes back that i was cancer free, will i be upset?

they each have medical reasons for their conclusions. #1 says that i have 10cm of scattered DCIS (ductal carcinoma in situ, or cancer that hasn’t left the duct yet). chemo doesn’t do anything to kill the DCIS, so it’s likely still there. a lumpectomy wouldn’t remove it, or to get completely clear margins and remove it fully, would only leave me with 1/3 of a breast. the DCIS could turn into invasive cancer at any point (e.g., tomorrow, 6 months from now, 6 years from now).

2 says that who knows if the initially diagnosed DCIS is really still DCIS–it might just be calcifications, which may or may not turn into anything. ever. since i’ll be actively monitored with annual MRIs and mammograms each 6 months apart and clinical exams between, we’ll know what’s happening. if anything changes, i could have a mastectomy then. she said in 5-10 years, we could look back on women like me who had fabulous responses to chemo and realize we’ve “surgically mamed” them for no reason. i love that she, as a surgeon, was hopeful her job would become unnecessary.

the interim conclusion: have some more scans since finishing chemo (blogging live from my MRI waiting room, btw), do a core biopsy of any stuff left (DCIS? calcifications?), and then figure it out. if the biopsy shows DCIS, then there is no choice and mastectomy it is. if it just shows calcifications, then i have a choice, and it’s whether or not i can live with (or lose) a breast that once betrayed me for completely unknown reasons (too much organic kale? too many bay area pollutants in the air from chevron and silicon valley and cars? too much radiation from air travel? too much tap water from old pipes in old buildings? too many years on the pill? too many electronics? too much time on the couch or the desk chair? too much BPA from cheapy plastic containers filled with too many shampoos with parabens?) (i could fill that parenthesis for hours, believe me).

have i lost you yet?

my case was presented before the UCSF tumor board a few weeks ago, and there was no concensus among the doctors on my surgical plan. so we’re in good company. results from today’s mammogram and MRI and thursday’s biopsy will all go back to the tumor board on monday for input. usually the tumor board is something you want to avoid, because it’s a place for doctors to debate approaches for really complex, tough cases and their best course of action. in my case, it feels indulgent to get all that doctor brainpower behind a surgical choice, but i’ll take it.

the good news is that we may have options because of my response to chemo. all of the doctors were emphatic about how few cases they see each year with this kind of response. call it spontaneous healing (i don’t, mom, because i technically still have cancer) (although i do think all of you have helped this happen in many ways) or improvements in science or a treatment plan tailored to my situation. whatever you call it, it’s awesome. these are the oxymoronical good problems to have. that being said, there aren’t statistics that include me. none. most long-term studies are on post-menopausal women, or don’t include Her2+ women because it’s such a new marker. the scientist in me gets nervous. i really want to see the data to believe it.

beyond the whole life-saving and local reoccurrence things, which of course are the biggest factors, there are some other things rolling around in my head on surgery.
when you throw in radiation with a mastectomy, the chances of complications during reconstruction surgery go way up. it’s not just infections–it’s losing the breast and having a concave space left to fill with various prosthetics. kind of makes clothes shopping or swimsuit wearing more involved than it already is. i could have reconstruction later, but by that point, a person is often surgery-ed out.
with a mastectomy, the surgeons think they could save my nipple. often times, it has to be removed based on the location of the cancer. other times, if there isn’t enough circulation, it could fall off after surgery. like, “oops there goes my nipple!” it’s not funny but it’s very funny. many women with mastectomies remain without nipples, get them tattooed on, or surgically reconstructed from some skin graphs.

with a mastectomy, i lose all mammary glands in that breast. i won’t be able to breast feed. even with a lumpectomy and radiation, i may still be able to breast feed a tiny bit from that breast. beyond all the nicey nice benefits of breastfeeding like bonding with the baby and giving it A+ nourishment, these are some other more crass, but just as real, reasons it’s of importance to me.

some of you have asked why i don’t just get both breasts removed. this article in the NYT last week discussed the growing trend of women having double mastectomies and doing it prophylactically. there is no medical reason for me to have bilateral surgery. my left breast is fine and i don’t carry any known breast cancer genes. for me it would only be emotional. and in talking to another BAYS woman, she thought having a double would eliminate her worry about reoccurrence or mestastisis. it didn’t. breast cancer can still reoccur in your skin or the chest wall, even after you remove your breast tissue. and we all know the story on mestastisis–no one knows why and how, except that it happens. oh, and with a double, breastfeeding is completely out.
while the plastic surgeon is amazing at what he can do to get my 2 breasts to match, it is not a forever match. if i gain weight, only one breast gets bigger. if i have a baby, only one breast stretches. i can always have surgery to correct them, but that’s just annoying.
with an implant, it’s not a forever thing. it can rupture. it also ages so will have to be swapped out at some point. so it actually is a forever thing in that i’ll always have to deal with it.

given the length and intensity of this post, you can tell i’m really up in this decision, with pros and cons out the yahoo. chemo is a memory but a relatively close one. just being a week out of AC (screw AC forever!!!!), chemo side effects linger and will do so for awhile as we know (e.g., digestive issues, weirdly infected fingernail, fatigue, random port oozes, 6 eyelashes [i counted] desperately hanging on, hormonal zits, and an overall cancery appearance). breathe in, breathe out.

all that crap being said and out of my head, i’m thankful each day for waking up. sometimes i’ve even surprised. i’ve gotten to hang out so much with friends after shaking off the fog of AC last week. good stuff (aka chemobration) (thanks, sarah)–dinner out, wine tasting in sonoma (it was DELICIOUS–pic attached), walks in the sunshine with stunning views of the city, and tea in the backyard. and i might even go into the office this week on a doctor free day, do a mud run (or in my case, crawl) with BAYS and some yardwork this weekend, and have a good ol’ fashioned beer with friends over the super bowl (yay ‘niners!) (the first time i’ve ever said that in my whole life. #fairweatherfan).

life continues moving forward, and there is more goodness to come, with or without a breast.
xom

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passing a mile marker

i don’t like running. i’m not into races. the one 5k i did with mike and our friend derek a few years ago was kind of painful, especially to watch the people who warmed up with a 5k before the actual 5k pass me in their tiny shorts. show offs. 

despite all that, i have a great sense of a mile marker with my last chemo tomorrow (i was able to get the third AC even with a sinus infection, and i think the chemo helped clear that crap up. pleasant surprise!). it’s like i’m rounding the bend. i woke up with butterflies in my stomach about how excited i am to be done with chemo, and with the friday/saturday fluids and follow-up meds too. just too many hours over the past 5 months sitting in that infusion chair…approximately 126 hours by my count. 

i’m so amped to feel more alive, both literally and literally. while the anthracycline stays in my body for the next month, i’ll start to feel better a teeny bit every day. i’ll grow red blood cells and get some energy because of it, be able to eat and poop (btw, never take those 2 things for granted), give up my mouth sore rinse, enjoy lemons in my water, more quickly heal paper cuts, and be able to give up the guessing game each morning–what new side effect will i feel today? will my fingernail fall off? will my gut be tied in knots? the rest of my treatment plan is no picnic, but the uncertainty of chemo can be crippling. this top ten list of ways to get a taste of chemo brings some dark cancery humor to the whole mess. 

all the chemo guidebooks say to avoid your favorite food and clothes during treatment because you’ll start to associate those beloved things with chemo. i didn’t believe it would happen because of a mind over matter arrogance. but recently, even seeing my backpack, water bottle, and snackbag that we always take to infusions brings on a wave of nausea and anxiety. and i’ve buried a few sets of clothes deep in my closet that have been well-worn to infusions too. spring cleaning is coming early to the campbell household. 

i think whiz is ready too (thanks for the request, and pep talk, joanne!), just given his annoyingly adolescent behavior as of late. peeing on the carpet, eating my nexium acid reflux pill off the dining table, and otherwise terrorizing inanimate objects like pens and kleenax. he’s tired of my chemo moping. 

thanks for helping me get through these past months. i get a surprise (fill in the blank) from someone each day, and it’s so humbling to be surrounded by wonderful people who do and say wonderful things. at some point, i’ll synthesize the things that have most resonated on my toughest days, because some of you have asked what’s been the most helpful. at another point, if i can muster up enough honesty (because let’s face it, i’m honest here but only share about 75% of what i could), i’d also like to reflect on how cancer is crystallizing my view on relationships. 

for now, i’m still working on being nice to myself. easier said than done. i have a lot of negative thoughts about what i’m doing or not doing, what i did or did not do. that’s a longer work in progress. maybe that type of chronic background noise of negative thoughts and the associated stress hormones provided a happy petri dish for cancer to begin with. no one knows. but, more later on how to come up with a survivorship plan to deal with those things. 

but first, getting through tomorrow and the next week of side effects and then having a little dance party to celebrate passing this mile marker…!

xom

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