p.s.

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

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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diagnosis: ate muffin wrapper + 1.5cm

New Fashions

another week has passed, as i settle into a rhythm with treatment, side effects, walking, working, remembering to rinse my mouth 7 times a day, guided imagery, trying to have a super healthy immune-building diet, acupuncture, and being thankful for all the thoughtful mail, surprises, visits, and everything else generous you do for us. and then repeat. my acupuncturist said that this is my full time job, and i really am starting to feel the weight of her words, both good and bad.

after i enjoyed a homemade zucchini muffin from sarah and michael yesterday, i tossed the paper wrapper in a bowl on the floor and walked away for a hot second. when i came back, whiz was sitting there licking his lips and cleaning his paws. the wrapper was missing. i looked everywhere and drew the obvious conclusion. so, one hour and few dollars later, we left the vet with an x-ray confirming he likely ate the wrapper but at least chewed it up enough to get it through his 5-month old intestines. i am not winning parent of the year award here. mike is trying to figure out how to recoup those costs by deducting the ER vet bill from any future discretionary expenses for whiz. so, it looks like no more blue dildo toys in whiz’s future for a long, long time.

i finished my third of twelve chemo treatments in this round with ease. they lowered my pre-med steroids, so i did not have the epic energy as in week’s past and our drawers remain unorganized and backyard unswept. my port and sutures are almost fully closed up, and my skin rash is subsiding but still taking its sweet ol’ time to go away. delayed healing is part of the deal under chemo (my knife-in-hand incident from 4 weeks ago left a lingering hematoma in my palm too). little side effects keep popping up, like a bloody nose. i’m shoving aquaphor up my nose to help with the dryness; the nurse practitioner (NP) said, “we’re robbing you of your nose hairs.” too bad as i think those are generally helpful in life. at least it’s temporary though. and i have to remind myself of this in general each day.

this particular NP isn’t going to be my best friend, so i’m looking to switch around my appointments to get the ‘sweet’ one. the NPs are the ones who will spend a lot of time with you, and i need someone with more compassion on that front. she was thorough but brusque. she also told me news that i didn’t particularly want to hear, that the surgeons could take all my lymph nodes since one to several (i mean, what’s several? more than 1? 5?) were found positive in the PET/CT and biopsy. that they would just keep going once they got in there. this was after telling her that i am most fearful of lymphadema, and she said, “i would be too.” sigh. this elephant arm condition is very painful and never goes away once it comes on. it can be aggravated by flying or getting IVs or your BP taken from that arm. it’s just scary to me and really impacts your life and lifestyle.

the best news that came to us this week was during this appointment. she clinically measured my palpable tumor, and it is confidently 1.5cm. that means that after 2 rounds of chemo, it shrunk down from a start at 1.75 – 2 cm. unless her measurement was off, but she wasn’t the kind of lady who would mess around. that gave me a boost for sure. that this sometimes imaginary disease that i have is real, and the nasty stuff going into my body is actually doing its job.

my wonderful nurse caroline–a cambodian woman with a south side boston accent–was surprised my hair hasn’t fallen out yet. it should have started last week, but nothing, except maybe my nose i guess. there are trials in play at UCSF where women wear these cold caps to avoid hair loss. beyond looking like an epileptic wearing a bright blue helmet, they seem like a huge pain. you have to sit for 3 hours post treatment with a freezing cold ice pack wrapped all over your head. and then do that several times throughout the week at home. i know hair loss will be a huge deal for me when it happens, but that extra stuff just doesn’t seem worth it, on top of everything else i am to remember. we almost saw a husband-wife team lose it in the infusion chair next to me while trying to get her cap on correctly. so maybe that was the biggest turn off of them all. stress on top of stess, with a side of stress, on a platter of stress. and then a dash of stress to finish it off.

i have a lot more to share with you soon, on clinical trials, diet, and grief. but i’ll save that for another day.

i hope wherever you are, there are the smells of fall. i miss that the most about the midwest. the smells of the air turning, cool nights, crispness of leaves. it stirs up a lot of fondness in my memory–playing soccer on saturday mornings with chapped faces, picking apples, friday night football games, and squeezing the minutes out of the day as the darkness practically tramples the light. and then knotty stuff–with the onset of fall comes closure, coldness, starkness. reminders of sad things like my grandma gg and nana’s deaths and my grandpa’s grief and holidays with empty chairs. having my toughest treatments when it’s going to be literally the darkest of days isn’t exactly look-forward-to-material.

but for now, i’ll celebrate the goodness of fall and the seasons changing. i’m going to a barn dance with friends tonight and breaking out those red cowboy boots that were made for a perfect fall day like today. and for stomping all over cancer…:)

xom

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Dispatch from the Lesser Half Vol. V

Thank you all so much for your continued support, messages, cards, meals, visits – everything.  It really has meant a lot to us both, and especially Meaghan. And over 3,350 visits to this site…wow.  That’s about as many times as I apply sunblock in an average year.

As you can tell from my wife’s amazing posts, this treatment plan will definitely have its highs and lows. We certainly knew that after the diagnosis, but it doesn’t make the tough days any easier.  But a stupid rash, a sore knee, or the emotional decision to cut her hair short is not going to stop Meaghan. It may slow her down for a few minutes, but she picks herself right back up and tackles the next day. It really is something to watch up close.

Infusion #2 took place on Thursday and went well.  The nurses continue to provide great care and comfort.  While there are far too many people of all shapes and sizes being treated, it is comforting to know there are so many talented people to take care of them.  This time Meaghan’s treatment room had three other patients – two of which had no visitors with them.  What a battle to fight on your own – even if it is just one short block of time.  I did get a kick out of the one older woman in the room.  She was sleeping during her treatment and one of the orderlies had to wake her up to take her vital signs.  Quick on the draw she said “I just want to know I AM vital.”. Amen Barbara. Or whatever her name was.  But she looked like a Barbara, trust me. She is one tough broad.

This past Saturday Meaghan got to spend quality time with her two favorite men in San Francisco: 1) Whiz and 2) Lucas, her hairdresser.  Whiz continues to be the #2 star of the house after Meaghan.  He really brings her a lot of joy and spontaneous laughter, so I give him some credit for that.  I also give him credit for running full speed into a clear table in our living room on multiple occasions…so like us all, he has room for growth. Overall, he’s been a good addition.

The haircut experience went well.  Lucas did a great job and made Meaghan very relaxed.  Friends Sarah and Marina came along, and saved me from uncomfortably reading girly hair salon magazines. And as many of you have noted, Meaghan looks great.

I have noticed something odd about myself in the past month.  Ok, more odd.  I have caught myself watching You Tube videos of people winning things – award speeches, prize winnings, game shows – stuff like that.  It’s a tremendous waste of time when you are winding down at night.  I started thinking more about it and its probably why I am such big sports fan, or like going to concerts, or listening to a stand up comedian.  I enjoy watching things being done very well…and way beyond my ability.  I would guess that I am subconsciously doing it more in the last month to get my fix for a smile or good thoughts…it’s just kind of bizarre and I’m not sure why its relevant here, but I already typed it and I stink at typing so I’m not deleting it.  I am also finding funny things much more funny than I did a month ago. Laughter is good medicine, even for the person who isn’t sick…physically at least).  I wish I could tell you that I was bringing the medicine for Meaghan, but Whiz has made her laugh about fifty times more in the last month than I have in eight years. And he spends each day concussing himself and getting seizures from shadows…

Thanks again to all of you for sending your love and support our way. I can tell you that our favorite cancer fighter feels it. Keep it up.

mpc

 

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things were less hairy today…

i mean, i knew ya’ll were amazing, but wow.  sharing that i was having a tough day brought alive–even more, if that was possible–your compassion and care. thank you so much.  i really do believe and feel that you’re part of my immune system.

mike and i walked through the neighborhood today to stretch my legs as my knee joints are starting to feel the chemo. we stopped in for brunch, and this song was playing.  it’s as equally appropriate for today as brandi carlisle was for yesterday.

and the haircut was bittersweet.  my wonderfully fabulous hairdresser lucas and i had a few teary moments. he assured me that hair has a funny way of growing back, and michelle williams (hair) has nothing on me. with friends in tow, we bagged up a pound or so of my hair to donate to locks of love, and i’m happily giggling at thinking of someone walking around with my hair on in the near future.

Fierce Pixiedespite having a phantom limb on my head today, i’ve been enjoying the ease of the pixie. yes, i squirted way too much shampoo out in the shower. yes, i laughed at all the cowlicks i never realized i had.  and yes, i demanded two friends to talk me off the ledge of thinking i look like 1) a boy or 2) a lesbian.  don’t get me wrong – both are great. i’m just neither.

so, here’s to starting the week off well, navigating new side effects with ease, feeling your warmness in my heart, and convincing my mom to lock up the computer before she takes her ambien each night.

xom

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have you ever wandered lonely through the woods…

as the adrenaline of the last month wears off—and i’m fairly certain that is precisely what i was  living on—i’m starting to endure the stages of grief.  i tricked myself into thinking i had successfully levitated above this process and gone right to acceptance of my disease.  it was bound to happen though.

the past few days, what’s been on repeat in my head is, “this can’t be happening to me.  i’m so healthy.  this isn’t fair. i have so many exciting things to be doing instead of dealing with cancer. this can’t be happening to me.”  cancer cancer cancer…i want to punch a hole in the wall.  and then i sit here self-loathing for all those times that i wasn’t there for friend or  didn’t do something to the best that i could have. that this is some sick game of payback, karma is a bitch, what goes around comes around.  and then the bargaining starts.  it’s classic  textbook.  and it’s my life.

this spiral started when we found out that there is cancer in my lymph nodes, and i’m diagnosed as stage II.  yes, it’s not stage III or IV, but it’s not stage 0 or I.  yes, i could be a  leper on the street without arms and legs (thank you, ann) but i could be disease free going happily forward with my life as planned.

it’s just going to be one of those days.  likely adding to the fuel to the fire is a drug rash covering my whole torso, my nails starting to chip, and my hair getting all cut off as planned tonight.  it’s the ants that symbolize the elephant.

i continue to be surrounded by all this love and joy and generosity. yet, i feel very alone. i’m the only one who has to ultimately take this journey. i have to get through treatments, losing my identifying characteristics, surgery, lending my body to literal poison, and the mental anguish of possible reoccurrence and facing it all over again.

there’s one song that keeps ringing in my ears and captures exactly how i’m feeling today, better than i’m able to articulate here. it’s beautiful, sad, warm and true.

but, as has been and will continue to be, what keeps me going is all of you. despite how i might feel inside today, i look around and see love and goodness in the world. huge heaps of it. brian and lillian got engaged. mandy became a grandma and meredith an aunt. kristin and chris are sharing their vows as I type this (and connie will soon become a mother-in-law!). and then all the other wonderful things you have been sharing with me, while you cheer me on, support me from the sidelines and even run beside me (and for me—thank you Ohio-ans!). i open your notes very carefully, because you and these notes are a precious gift to me. and you just keep giving, and i’m so thankful for you.

so, not a lot of comic relief today—i’ll save that for mike—but a lot of truth.

happy weekending, loving, and sunshining – tomorrow will be better, i know it.

xom

Still fighting

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a case of the mondays…

our weekend was fairly uneventful. if it were a book, chapter titles might include:

  • feeling glamorous while showering in glad press-n-seal
  • circa 1987: sending your husband to the corner drugstore to purchase maxi-pads because everything else is too toxic for his wife
  • remembering how to use maxi-pads, especially those with instructions in spanish
  • how to walk normally when you feel like you’re wearing an adult diaper (i didn’t say this blog is for the squeamish, did i?)
  • relearning how to clean up after/cook for/survive without your amazing parents doing everything for you
  • teaching your cat how to fetch (seriously, he loves to fetch a blue dildo-like toy) (i didn’t say this blog is for children either, did i?)
  • what’s this weird rash on my stomach?
  • and how to enjoy nice surprise [fill in blank] [for example, flowers, ice cream, visit] from friends.

not necessarily a NYT best seller, but we’ll take it. right now, my side effects have been pretty manageable. i’m tired and feel like i’m in a fog. mike patiently recites what we did each day to help me remember. so if i forget something we talked about, please forgive me (e.g., my entire last post…no recollection of even typing the thing). there really isn’t a pill to help manage that side effect, but exercise might help, so my walking partners start tonight.

my skin has been reacting with blisters and overall irritation to the post-surgery port dressing, so the doctor had me come in friday to get new dressings that were hypo-allergenic. my same port surgeon changed my dressing, and when he walked into the exam room, he said, “hey, cat massage!” so, it turns out that not only was he actually paying attention to my babble during surgery but he was also kind enough to make fun of me about it a full 24 hours later. i got my dressings changed again today at the infusion center, and hopefully in a few more days, my skin will return to normal when these dressings come off fully as planned.

as for the rest of the day, we just can’t get enough of the cancer center on divisadero.  i had my lymph nodes biopsied to determine staging and whether the nodes will be removed during surgery. as has been par for the course, a procedure that should have taken an hour or less and one shot, took almost three hours and five shots. and four doctors. i was calm enough to comment that with four doctors in the room, there had to be a good joke in there somewhere. the most charming doctor of the bunch said, “don’t worry – we’ve already changed the lightbulbs.” everybody’s a comedian. they were having trouble getting enough and the right tissue cells from my lymph node, using a hollow needle and guided ultrasound. once they extracted the cells, they immediately looked at them under a microscope to make sure they had what they needed.

we’ll know more in a few days, and i’ll likely get my formal pre-treatment staging. something i’m both looking forward to knowing but also dreading. i have absolutely no control over it, but it slots me into a category of success, or years likely cancer free after treatment, or rates of reoccurrence. sometimes you just don’t want to know those numbers if they are not good ones.

i will admit…everything that i’m experiencing is exceptionally bad in the moment, but that moment passes (time has a funny way of always moving forward, good or bad, right?) and i can focus on other things. like reading your letters, posts and emails. i love these things, hearing about what is going on in your life and with your children, grandchildren, pets, neighbors, school, work, trips…anything really. this cancer business can feel terribly me me me. because it is. i’m literally fighting for my life. but that gets boring fast. i want to hear about you–the good and the bad.

i also need to let you know that no matter if i say i’m fine, i’m not always fine. this–accepting that i’m not always fine and not always being fine–is really hard. each day brings a new challenge. when i try and brush off your support or offerings, please don’t let me get away with it. i need you all now more than ever. and in general, you’re delivering big time. i just wanted to remind you…and myself too.

stay well, and big hugs –

xom

 

 

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