keeping abreast | keeping a breast

on tuesday afternoon as the last of the herceptin dripped through my IV, i felt good.  like really good,  knowing that i could now see chemotherapy only in the rearview mirror.

one of my favorite nurses jeannie gave me the last chemo. the rest of my crack nursing team–emily, jay, ilonah, pauline, and katie–gave me a going away present, including a sweet little purse for our upcoming trip.  they mixed in a few tidbits from the infusion center, like gauze tape, tissues, and pill shot cups which i could use for alcohol according to ilonah.

these women serve a special, even holy, place in this world and have been a major part of my life since last september. they’ve seen me at my absolute worst, been cheerleaders to get me on the other side, provided treatment and side effect management with sympathy, empathy at times, but never pity. they are quick to get me a warm blanket (maybe one thing i’ll actually miss about the infusion center!). they’ve shared bits of themselves with me…stories about tripping at the cal-train station, their babies, recipes, their own bouts with cancer, caring for an ailing uncle, ringworm back on the farm in ireland, and struggling with the paleo diet. they’ve missed mike when he wasn’t there, and equally welcomed thecast of friends and family who sat with me instead.

i mentioned to nurse emily a few months ago that i would love to do a documentary on oncology nurses in infusion centers, what makes them so resilient to be surrounded by so many sick people in a place those sick people really don’t want to be.  her response said it all:  “i can’t believe i’m even paid to do this work. i feel so lucky.”

well, i feel lucky to be on the other side of chemo and to have met these women.  even though i’ll be back for my shots, we had a tearful goodbye.  pauline asked me to never come back…for treatment, that is. cutting the cord is what we all want, but it’s going to take awhile to unpack this jumble of emotions.

i’m off work now, and we’re off traveling soon. let the healing begin…

happy thanksgiving. 

xom

ps go staunton bulldogs and congrats on making it to the championship!!! 

i was unpacking a box this week from our move in april 2012 and came across this picture of my grandma, nana. she was always so put together and would comment to me on occasion and in her sweet voice, “i really love your hairs. did you do something different to them?”  it was a supreme compliment, given nana’s style and that my “hairs” were normally, according to my mom, a rat’s nest.  we would later laugh at nana’s comment, amused at the cuteness of her word choice. i wonder what she would say now about my hairs? it’s typically the first thing anyone comments on. so, to save my breathe and mike’s boredom with the same answer on repeat, here’s an FAQ on my hairs post-chemo:

• was your hair always this curly?  no.
• when you got it cut at the beginning of chemo though, wasn’t it that curly? no.
• why is it curly? no one understands the mechanism why it happens to only some cancer patients.  theories abound–from my NP suggesting that hair is simply excited to be back and alive. or my own mind thinking all the chemicals of chemotherapy gave me a super legit perm. or my oncologist clarifying that it’s ontogeny recapitulation where the hair goes back to its birth state, which doesn’t seem accurate because i didn’t have an afro when i was born.
• how long will it last? um….let me get out my crystal ball.  your guess is as good as mine.
• was your hair always this dark? no.
• do you think it will get back to its original color?  see crystal ball answer above.
• do you like it curly?  i’m enjoying it, because it’s quick, easy, and hair.
• will you let it grow out? i’m not worried about my hair right now.

 having hair or not having hair is the most visible mark of cancer, so it makes sense that it’s the most talked about too. but, i’m over talking about it. i’m just thankful to have hair. a bald head in the winter gets cold. a bald head frightens small children walking down mission street of an afternoon. a bald head causes your neck and face to feel really vulnerable. a bald head renders you unrecognizable to people you’ve known for years. a bald head makes others feel uncomfortable or sorry for you. that’s the hair story. 

i’m headed to my final, yes FINAL, chemo on tuesday. the final countdown! then we head out on an epic vacation where we will say many times: fuck cancer! and, live life! more on that soon.  for now though, congrats to brian and lillian for a beautiful wedding, hugs to tara and mark on a beautiful baby boy Jonah, and my heart is with washington, illinois tonight.

xom

borrowing from my friend lauren’s blog, sister disco, she has a regular segment called one word, two ways.  today, i bring you one word, two days: crawl. 

last week’s litcrawl was superb, exhilarating, heart-wrenching, poignant, and funny.  about 100 people showed up to our reading, maybe due to the catchy title involving nipples and highlighter who is a stripper. we had 7 readers over the hour, and i read a modified version of an old post on how to be a helper. the event continued on into the night with over 50 other readings scattered in bars, clubs, laundromats and restaurants throughout the mission. i’m thankful i got to be part of it.

it helped distract me from the bone marrow biopsy i had this week.  which left me wanting to crawl around the past few days.  i am part of a study at UCSF that’s testing whether or not the drug denosumab/xgeva helps prevent metastasis to the bones.  phase 1 of the study involves a bone marrow biopsy to determine the level of circulating breast cancer cells in my bones; if above 10, i qualify for phase 2 and receiving the drug. 

i wanted to participate in the study for a few reasons. it would be a data point to know if i had a lot of circulating breast cancer cells still left in my bone marrow.  i’d know what we were dealing with.  it could help me in the long-run to prevent metastasis if their hypothesis holds true, and it could help others who come after me. it’s an FDA-approved drug for osteoporosis; because i’m in chemically-induced menopause, i need to worry about bone density and osteoporosis anyway. so i would kill 2 birds with 1 stone.  my dad is on denosumab/xgeva for his stage IV kidney cancer that’s on his bones, so it would be a father-daughter bonding opportunity. that’s only slightly funny, as an aside.  and finally, my oncologist is the primary investigator, so i get some extra 1:1 time with her to answer my endless stream of questions about side effects, new drugs on the market, research, and anything under the breast cancer sun.
my friend kristin g. came with me to get the bone marrow biopsy. it’s hard to believe it’s now a quick outpatient procedure.  to give you the image: me, face down on a hospital bed, with my pants pulled halfway down so my butt was hanging out. after my oncologist pressed around on my butt for awhile and complimented my underwear as cute, she numbed the top of my hip near my sit bone. she kept the needle in and continued to numb til she got to the bone.  then she put a bigger needle into the bone and sucked the marrow out. it felt like my leg was being vacuumed from the inside out.  she removed all the needles and put a lot of pressure on the area to stop the bleeding. i got bandaged up, had some juice to i didn’t pass out, looked at the vials of my bone marrow, and yawned off the effects of the 1/2 dose of ativan i took to calm my nerves.  um…so…ouchy ouch.  all in all, the needle part took 5-10 minutes, and kristin held my hand the whole time.  but man that hurt. and the few days afterwards have hurt too, making it uncomfortable to sit or lie down.  apparently i use my butt pretty frequently.
i was prepared to receive my results. if above a 10, then ok, we’d know what we’re dealing with and i’d be getting the best drugs out there. if below a 10, then maybe i could rest a little easier knowing that there weren’t too many lingering breast cancer cells in my bones.

so, i got my score. and, it’s below a 10!  good news, i guess/think/want to believe!  i’ll still get monitored like normal for any signs of metastasis, but no drugs to help prevent it. not yet at least.  it was worth it to me, despite wanting to crawl around the house this week.

that’s all to report from cancer land.  

we’re headed to brian and lilllian’s wedding this week. i’m so (SO) excited for them. i’m also pumped to see friends and catch up on time that was lost this year. it won’t replace the other weddings i’ve had to miss or trips cancelled, but it’s a good start.
xom

happy almost weekend. i feel back in the spin cycle of life—schedules, work trips, eating dinners out, skipping exercise, checking my email after work hours. it all feels like a guilty pleasure in someway, like i’m cheating on my better self. but then i sleep for over 13 hours in one night and my body screams a little scream and waves the white flag to surrender.

i was blessed to spend the last week in new orleans, partly at the environmental grantmakers association (EGA) annual retreat and partly running around the city. in my life, i will figure out a way to get myself rooted in new orleans. and it’s not because a lot of members of the Black community there really admired my chemo curls (i had 2 different people give a touch my hair and numerous others compliment it). it’s because the convergence of cultures, music, spirit, and place makes me swoon.

i missed EGA last september in NY. it was less than satisfying to be on the planning committee for that and not be able to see it all come together. so, attending this year’s EGA was a goal, come hell or high water (luckily neither this time around, although we left a day early to ensure tropical storm karen didn’t foil our plans).

i got to new orleans just fine, made new connections and learned new things. as an aside, i also starting categorizing my interactions post cancer-land:  many don’t recognize me and (re)introduce themselves only to panic when they realize their mistake. others who don’t know ask why i got a haircut. and still others who i meet for the first time don’t know a thing, which is both refreshing and irritating (like, it’s nice to not always talk about cancer…BUT i almost died here and we’re chatting about the weather…BUT i don’t want to be the debbie downer or only known as cancer girl) (i came clean when asked 4 separate times by new colleagues if i’m thinking about having children. that one deserves an explanation. my friend angie thinks maybe my haircut screams maternal).

back to new orleans. one thing EGA does a fantastic job of at the retreats is highlighting the meeting place. in new orleans, that means music (see me pictured here with THE kermit ruffins…kissed him on the cheek even. holy shit!). when it came time for EGA’s annual memorial that shows all the people who died in the environmental movement this year, a new orleans jazz band entered the room. they started their dirges slowly, methodically, mournfully as images of the deceased passed on the screen. young and old, all vibrant smiling faces. i thought of all those that i’ve lost this year.  including, most recently, kookie whose handwritten notes of encouragement to me sit by our front door, and jen a fellow southern illinoisan of livinglegendary.  it then hit me that my picture could have been on that screen.

the music picked up, the mood was about to change, people started moving, and we fell into the second line waving our white handkerchiefs that were just used to wipe away tears and dancing as jubliantly as a group of mainly middle class white folks can dance on a tuesday morning in conference attire. i squeezed in with anne, rachel l, lisa j, and john d. it was appropriate. we all just knew. the music was, by then, downright joyful.

jazz funerals represent the unity of the many new orleans cultures, and as it goes, that unity allows new orleanians to face things together. we were doing just that.

i later learned that new Orleans jazz funerals mirror the very human, very natural grief cycle: denial, anger, bargaining, sadness, and finally acceptance and a way forward. the base drum’s shocking beats. the slow, somber dirges and a funeral march. the spiritual hymns. then, the switch in pace to upbeat, joyous movement. the music helps you feel and express your grief. it helps you exalt a life well lived. it is cathartic.

so this trip was cathartic on many levels. one level that i want to continue tapping into is being more open, less scheduled, and in the now. my friend ann has mentioned being grateful to be there for friends going through life-threatening illnesses or other major upheavals, because they are often more open. open to exploration, to being honest and authentic, to being real.  it is my struggle to find out where i can maintain an existence between being open and being caught up in the spin cycle of life (a spin cycle that we all know only we own the controls for).

onward. with 3 chemos left…

xom

that’s right. september 6 was my chemoversary! what did you do to celebrate??? 

in what seems like both ages and seconds ago, i started chemo and on the same day, got a port surgically placed in my chest to ease all the blood draws and infusions. time is time. 

i’ve been doing chemo for 52 weeks now. i’ve had 30 chemo treatments (with 3 to go!), and that doesn’t count the 8 extra days of fluids i got to quell nausea. or the oodles of blood draws on top of it all to make sure i was “fit” to have a drive by chemo shooting. or the day-after-chemo shots in the stomach to boost my white blood cells. or the monthly shots in the stomach i continue to get to quiet my ovaries. a conservative estimate is 134 hours sitting in the infusion chair to date, that assuming everything is on time (e.g., an open chair, pharmacy, my nurse’s patient load). so all in all, i spent about a full week out of the past 52 weeks in that chair. 

head. is. spinning. 

these numbers don’t lie. these numbers don’t run. these numbers are made for walking. what other saying can i substitute ‘numbers’ for and have it make sense? 

throughout the most acute chemo treatments–taxol, adriamycin, and cytoxin–i shared side effects with you and tried to provide a snapshot of my day to day reality. i had to keep a daily journal of my side effects as well as my temperature, weight, and bowel movements. this all in case something went awry and my care team could piece together what was happening. let’s just say I was realllllly in tune with what was up with one meaghan calcari campbell. 

i’m working on cleansing the weight of this experience, and one way to do that might be to put it all out here. so here goes, a summarized version by what was most prominent and mentioned that week:  the chemo diaries (not going to be a bestseller) (these notes are transferred verbatim).

• week 1: flushing, skin rash and irritation on chest, joint stiffness, shooting bone pain, runny nose, gassy.
• week 2: flushing, skin rash on torso, headache, knee and lower back pain, acne, dry lips, mouthsore, gassy, bloody nose. 
• week 3: chest pain, diarrhea, constipation, diarrhea.
• week 4: chest pain, back pain, sore throat, constipation, hair loss.
• week 5: hemorrhoid, leg rash, headache, gassy.
• week 6: hot flashes, leg and feet numbness and tingles, gassy, diarrhea, bloody nose, vision impairment.
• week 7: headache, diarrhea, leg and feet numbness and tingles, hot flashes hot flashes hot flashes, insomnia.
• week 8: bloody stools, headache, leg and feet numbness and tingles, hot flashes, insomnia.
• week 9: constipation, joint stiffness, leg and feet numbness and tingles, notable memory mistakes, insomnia.
• week 10: constipation, hot flashes, insomnia.
• week 11: diarrhea, blood in stool, joint stiffness.
• week 12: diarrhea, constipation, diarrhea, constipation. hot flashes.
• week 13: nausea, bloody gums, vomiting, diarrhea, joint stiffness, bloody nose, eyebrow and eyelash loss.
• week 14: nausea, constipation, acid reflux, cough, joint stiffness, mouthsore.
• week 15: nausea, constipation, acid reflux, cough, runny nose, joint stiffness.
• week 16: diarrhea, constipation, acid reflux, insomnia, metallic taste.
• week 17 and beyond through now: persistent runny nose that drips at the most awkward moments, residual acid reflux, confused digestive tract, fatigue.

during the worst of my chemo, my friend julie who had a similar treatment plan commented that chemo was a distant speck in her memory, being a year or so out of it.  i think my jaw hit the ground, like how is that even possible?  but, i’m beginning to understand. all of these things, these insults to my physical person, they are largely passed. my support network, my care team, the massive quantities of prescriptions and supplements and herbs and medical marijuana i was taking to manage through side effects–those things all helped me get here. it’s not yet a distant speck, but one day when my energy reserves are back and enough space and time has been created and my lingering chemotions start to sort themselves out, it might be.

 there’s no completely forgetting chemotherapy though, a hallmark of my incanceration (the word play opportunity here is endless). i spent months marinating in a stew of toxic chemicals whose primary goal was bringing me to the edge of death. i had to flush the toilet twice during treatment, as per UCSF instructions, to ensure that the next person didn’t get the effervescence of my peed-out drugs. i won’t ever be able to smell alcohol swabs again without getting queasy, or shake the taste of saline in the back of my throat from when they are flushing my chest port before and after treatment. the sweet, clean smell of the infusion center gives me shivers. as well, i can’t erase from mike’s memory the chemo farts that smelled bad enough to peel paint off walls. even whiz had to evacuate on occasion. 

to celebrate my chemoversary, when i get home from my work trip friday night, mike and i will dig out our 2+ year old wedding cake from the freezer, light a candle in it, blow it out, and make a wish. something along the lines of world peace…and eradicating cancer.

i hope you can find something to celebrate as well this week, and something to wish for.

xom
ps still no PET/CT results…

you sent a lot of messages and notes of support following my admission of fog. what was so beautiful about them was what you communicated: we are all human. cancer is one type of scar, but there are oodles of others that you are wearing, hiding, healing from, going through. and will continue going through because like you said, you just don’t stop even if the outside world feels as though “it’s time.”  unemployment, job satisfaction, death, fertility, chronic illness and chronic health conditions, eating issues, addiction, divorce, and family relationships. you’ve given me a tiny snapshot of what you are all going through and that’s only a handful of you. 

shit. 

and i agree, i don’t know what it’s like to be you, just as you don’t know what it’s like to be me. but i can appreciate that it’s difficult for you, and you can appreciate that it’s difficult for me. and the both of us can see the common threads of the human condition are there, in the beautifully messy tapestry that is our lives. 

during the worst of chemo this winter, mike and i blew through the tv series parenthood. in one season, the patriarch gets schooled in being more respectful to his wife and with therapy, works on trying to communicate to her: “i hear you, i see you.”  it’s become our code for just what it is. and for you all too, “i hear you, i see you.” and i know you hear and see me too. 

i know support is done out of love and wanting me to actually be better and to actually be back (well, at least i hope it is). and like one person who responded, i think you all will play a significant role in helping pull me through, fake it until i make it, do the best i can with what i have. and one day, i’ll wake up and the genuine feelings, the feelings of me, will be there. 

the pet/ct on friday was ok. i did pass out shortly after receiving the IV (vaso-vagal response won that time), but it was likely because i had to fast for 6 hours and my blood sugar was 70. mike wasn’t particularly thrilled with my hangry, exhausted inability to make decisions afterwards, but we all survived. the crazy warm pee-pants sensation from the dye was still the same during the test, and i walked around the city in a radioactive state for a few hours afterwards, with advice to not be near or holding small children. will let you know the results when i know them.

xom