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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