keeping abreast | keeping a breast

i’m not a parent (and having a fur baby doesn’t count) (having 11 totsicles doesn’t count either). i don’t know what it’s like to have children. sure, i can imagine it. but that’s about it.

frankly, a lot of the parent stuff i don’t get. sacrifice sleep? your body? yourself? all for the betterment of another person? call me shallow, but that sounds like a lot.

however…what i do get is the reality of seeing all my friends morph into these fierce moms and dads, willing to fly to the moon and back for their child, smiling in ways i’ve never seen them smile before, marveling at this creature that only exists because of them. and i do get how our own parents are here for us.

sure there’s a lot of pressure on parents, especially moms, these days to be and do everything. and parenthood is possibly the hardest thing someone can do in their lives. 

especially if you have a sick kid, or one with special needs, be they physical, mental, or emotional. 

when i was first diagnosed, we drug our heels in wanting to tell our parents, recognizing how much of an already heavy load they were carrying with cancer and caretaking, how difficult it would be for them, how helpless they would feel, and that they would go on their own painful journey as we went on ours. they couldn’t protect us or put a band-aid on it. they couldn’t trade us places. they couldn’t drop everything and move in to be full-time caretakers (although it’s gotten to the point that our electrician asks where my parents are when he drops by to do simple projects). they couldn’t make it go away.

i don’t think we ever get over needing our parents, especially our moms.

today in this post, we just want to thank our parents for all the sacrifices they have made, things they’ve done, things they’ve said or haven’t said, to make it just a little bit easier for us.  our parents are all at a distance; the cards and small thoughtful gestures had added up with the time here pulling weeds, cleaning the roof, making furniture (seriously), scrubbing toilets and floors, cooking, boiling hot water for tea, washing our sheets and towels, running random errands to wal-greens and the library and grocery store, doing the dishes, and so on.

my mom (momba/kathy concernicus/katheter) left yesterday, and by having her here the past 2 weeks, i could focus on healing, working, and other things to keep my mind occupied and a bit detached from the post-op situation. i was more than a little bummed to have to make my own breakfast today and put away the dishes, but i’ll live.
thank you, thank you, thank you, parents.

some recovery updates: i got my final drain out on thursday, ending the long daily cycle of drain care, pain meds, antibiotics. the incisions continue to look like they’re fusing together well…well enough for me to get most of the bandages off and the first 25cc fill on the expander. when the big fill needle came out, there was some blood, which made the doctor really happy to see that there is blood flowing through the tissue. i also got my monthly zolodex shot. i continue struggle with the live incisions (the newest one being a little over 8 inches from my back around to the front), residual scars and radiation dots all over my torso. i vacillate between feeling like a freak show and feeling like i’ve just survived some major shit. and…drumroll…after 26 days of sponge bathing, i got to shower. hallelujah!

xom (&m)

tomorrow, i round 2 weeks since the last major surgery.  i’ve been having a hard time keeping in good touch with people and feeling motivated to even check in. i’m bored and listless of healing, doing wound care, emptying drains, being scolded when i move to lift something, not showering (going on 4 weeks tomorrow…wowza), and giving my ambitious mom random house projects to keep her from plowing through the entire SF library catalogue. and that’s all ok. annoying. maddening. infuriating. but ok. throw in the dishwasher overflowing, kitchen ceiling leaking water, and whiz peeing on our bed to make it just that kind of week.

i got a good report from the doctor on friday. in fact, he was shocked at how good my skin looked. it was one of those back-handed compliments, or complisults…like, what did you expect to see??? i won’t let his puzzlement and set of “hm.  hm.  hmmmm???”  weigh on me much though. my skin is no longer too purple and bruised, and instead it’s looking like the back skin is recognizing the breast skin and starting to fuse together. he had to take a step back in the exam room to marvel at the human body. his words were “awesome,” which if you know surgeons, that’s not exactly in their preferred lexicon (according to the physicians assistant, who was just as shocked as he was). 

i also got my back drain out and hope to get my chest drain out this thursday + first fill of 25 cc in the expander. the healing has meant better sleep too, so that i can finally sleep on my left side without my right arm putting too much pressure on the incisions.

i thought of this maya angelou quote this week:  “i’ve learned that you can tell a lot about a person by the way he/she handles these three things:  a rainy day, lost luggage, and tangled christmas tree lights.”  i’d throw in surgical drains too.

because of a combination of the anesthesia and pain meds and shock of it all, my memory is foggy in some places over the past 4 weeks. mike reminded me this week of the potential solutions on the table if the back flap didn’t start working: another surgery in the coming week (worse) or leeches (worser). hold the phone…LEECHES??? while i’m a nature girl and appreciate looking to nature for solutions, are you fucking kidding me that the best we’ve got are…worms?  yes, yes that’s right. they do a great job pulling in blood to the surgical site (and pulling it out too…so much so, that if we went that route, i’d have to get a blood transfusion shortly thereafter).

in the words of my non-existent jewish grandmother, “oy vey.”

we can fortunately call off the leeches, unless something changes again. things are looking up, folks. and what else is looking up is a tiny adorable carrot my mom found in our CSA. and some good visits with faraway friends. and hearing from you. and baby lena born to bridget and steve.

talk with you soon, i hope.

xom

a few weeks ago, i participated in a rockwood leadership program. we did a powerful exercise with partners on when we lie and when we tell the truth.
i’m about to drop some truth on you.

this experience has suuuuuucked in a heart wrenching and physically painful way.
monday morning: after i opted not to get the lidocaine shot before my IV, the nurse commented that i must have a really high pain tolerance. i regretted that decision when my first IV failed and my overused vein blew. it really hurt and left me with a deep bruise. that spurred my vaso-vagal / pass out response.  everyone got me back to earth though. the second IV worked, thankfully.
in pre-op, the surgical team drew all over my torso, front and back. they said most of the lines were for landmarks, but it gave me a sense of what was to come.
when i woke up in recovery and was transported to my room, a few things were going on. i was intubated during surgery, so my throat was sore and dry. i told the nurse my mouth was the sahara (if i told her once, i might have told her 20 times…ok ok, 40 times.). she could only give me a few ice cubes at a time though.  then the shivers started. i had a reaction to the anesthetic that causes intense jitters and jaw rattling. they gave me something in my IV to relax my muscles.  then the itchies started. i had this during my mastectomy as a reaction to the morphine too; the itchies are intense and all over….the bottom of my foot, my butt, my ear lobe. another drug into my IV and these subsided over the few days in the hospital. then when i could start drinking water, i drank too fast, got the hiccups and started throwing up.
i was seriously waiting for the locusts to come because it felt like i was stricken by nearly every other plague. happy monday bitches.
sure, i was annoyed that the capsule had contracted so much in such a short time that we had to start over with an expander. but, i was more upset after taking a look at my chest. horrified actually, so much so that i cried. it was like having a mastectomy, again …losing the same body part, again. only this time, the post-op looked more like Frankenstein. multiple zig zag incisions. purple and swollen skin. crusty blood. i feel like a monster, so the Frankenstein comparison is apt. 
oh, and what’s this i notice? what’s this black dot on my breast now?  oh, it’s a mole. from my back. oh-my-fucking-god-I’m-a-science-experiment. the skin/muscle they removed from my back had some moles on it…so now i have them on my breast. if i ever wondered what my back looked like, i have my answer.
during my hospital stay, the surgical team expressed concern that because my new tissue was so purple, it could die. they thought they took tissue that had enough capillaries to establish new blood flow, but in the middle of surgery, the tissue surprised them by not being so stellar. so, they are keeping a watchful eye on it for now. i’d just hate to start this all over again, being already 4 surgeries deep. they will fill the expander very slowly over time to see how my skin stretches. i may have a normal size breast by june or july and right now am completely flat on my right side. pending no other complications, my swap surgery to a silicone implant would happen in october or november.
i came out of surgery with 2 surgical drains–one in my chest and one in my back–and then a pain catheter that gives a slow dose of local anesthetic to the surgical sites on my chest and breast. beyond caring for those things, i put a silver cream on the surgical site 2x/day to help it stay microbe-free. my right arm is numb, and they may send me to a neurologist if it doesn’t clear. i can’t lift more than 5 pounds for 4-6 weeks. i can’t shower, wear a bra, exercise more than walking, drive, or travel.
emotionally, i have equated this experience to be like getting diagnosed again. it’s triggering some PTSD. i was close to being back in the swing of things. so to be hospitalized, change my plans, put life on hold, focus singularly on my health, have another certainly uncertain road…it’s all so circa august 2012. i’m over it.
for now, i’m going to keep working. i just don’t want to give more time or more of my life to this disease and its aftermath. but i also have to take it easy. and not make rash decisions or operate heavy machinery…because general anesthesia stays in a body for 4 weeks post-op and definitely influences clarity of thinking (so i’m just going to chalk the random pillows i purchased off etsy as anesthesia’s fault, mmmmk?).
we got home wednesday evening from the hospital, opting to come home instead of stay another night to manage the pain. they wheeled me out of the hospital, which was helpful given that i’ve been otherwise hobbling around with limited hip flexibility from the hospital bed. while it wasn’t entirely a good idea to come home and this recovery is more painful than the mastectomy, i was happy to wake up in my bed yesterday morning. and again this morning. and hopefully again tomorrow morning.
so i’ve just given you the truth in a large dose. it feels good to get it all out there.
there is still beauty in the world…i’m reminded of this every day by lisa bonchek adams:  “Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” 
for me this week, that has been visitors and my dear local friends who have stepped up to help with food and lifting the teapot and caretaking during mike’s busiest time of the year (my mom thanks you so eloquently in the guest book here on March 27). it’s hearing from you. it’s realizing what a life-saver a catheter can be when physically moving is too painful. it’s the smell of jasmine in our yard. it’s internalizing my nurse mary saying how calm i was and suggesting i would be a wonderful surgical nurse. it’s my hospital bed nest with all 6 pillows the staff pilfered for me. it’s the PCA (patient controlled analgesia…my morphine on-demand). it’s all the nurses, techs and housekeepers at CPMC–ursula, kurt, daisy, erica, sheena, tsehay, mary, roben, fabio, bong and janette–who smiled, joked, gossiped, made me comfortable, let me snore, washed me up, protected me from the random roving naked man on the floor, and hugged me goodbye (fabio and bong…we couldn’t make up those names if we tried). it’s being connected to other BAYS women who’ve had similar complications and are on the other side of it and happy 8 surgeries later (emphasizing the happy part there). it’s my surgical team who was rocking out to james taylor when i was wheeled into surgery, and to fleetwood mac (yay Christine McVie!) when i was wheeled out. it’s remembering that i have the ability to breathe deeply and slowly.
we’ll keep you updated as to how this recovery unfolds. i had so hoped i could close the book on my cancer experience sooner than later. but i’m instead embarking on a new chapter. thanks for being part of it.

xoxom

we’re heading to the hospital now. i have my bag full of all the bits and bobs you’ve given me since august 2012…things to bring healing. things for luck. things that show your love. things that ask me to dream. things that make me feel grounded.all of them are near and dear to my heart.

xoxom

i’m oddly perplexed by my newly flat chest. there’s something reminiscently familiar about it, like being a little kid again. and there’s also something disfiguring about it, like being a…well, disfigured person. it’s like the car crash i can’t keep my eyes off of. i’m officially a rubbernecker.  attaching a picture for you to see of how it looks (there is gauze over the incision and that’s my drain grenade, so I’m sparing you some of the grossness.
the limbo is annoying, which is why i’m happy to report that the infection is clear, nothing grew on the cultures over the weekend.  so tomorrow, i proceed with the latissimus  (back muscle) flap surgery, that will help close the incision around my new silicone/gummi implant.
i’ll be in the hospital for at least 2 nights, the first of which is in an ICU step down. there are skilled nurses there who can handle the site’s blood flow issues. the recovery is 4-6 weeks, or possibly more, of no lifting or yoga or vigorous exercising. my doctor today said to think of the recovery as a mastectomy’s recovery. i have to prepare for that mentally and then hope for the best emotionally.
last week, i refused to process that these infections can quickly become systemic. that is some scary shit. long hospitalizations. life threatening microbes. so i’m glad to have the internal infection passed me for now. i’ll still be on antibiotics until i get the drains out but then hopefully i can be off them and get some semblance of gut flora/fauna/function back in the house.
i’ve appreciated hearing from so many of you. this does suck–you’re all right. and you’re alright too.over and out -m

i get a lot of questions about how cancer has changed me, if i’m living my life differently. the answer: yes and no, big and small. i’ve been journaling a lot on that and want to write you about it sometime soon.
when one of my nurse practitioners advised me to take medical leave, her reasoning was because one day, it would all pile up–the physical assaults and mental anguish–and i’d “lose my shit on someone…like the starbucks lady, or in a grocery store parking lot.”  i had a few moments where this was nearly true last fall, so my medical leave was timely…so that i didn’t punch someone.
this week seems ideal to lose my shit, given surgeries and infections and confusion. but it turns out, i already lost my shit last week on a plane ride. 
very long story somewhat shortened: a young woman sitting next to me had a severe fear of flying. while we were still on the ground, the flight crew escalated it by calling a professional psychologist in who is trained for these situations. the parents were trying to break though the daughter’s fear of flying and were committed to taking that flight.  during the 45 minutes of the young woman hyperventilating, screaming at her mom and crying out things like “i hate you,”  “you can’t make me fly” and so forth, the passengers around us started making snide, impatient remarks loud enough for the family to hear. my heart was breaking for this family, while my blood boiled about how uncompassionate the other passengers were. the family decided to take the daughter off the plane. 
the man sitting next to me opened his mouth to complain, and i couldn’t take it anymore and yelled at the first few rows around me:  “i have cancer. if this delay is the worst thing that happens to you, then consider yourselves lucky.”  the man countered me by saying, “i’m 81, nearing the end of my life.”  i cut him off and said, “cancer can do the same thing to you. and it can also teach you how to have compassion and patience, some things that you might still have time to work on.” i got some thumbs up and super awkward stares, and then absolutely no one spoke to me the rest of the flight.
it felt fantastic.
i need to get a couple more punches in again soon. and i confirmed: it’s never too late to lose your shit.
we got home from the hospital yesterday afternoon. i’m down a breast. during surgery, they tried to put several smaller implants in the capsule one by one, but the infected layers of skin couldn’t handle being stretched.  so i’m flat chested and have a surgical drain. they also took some cultures from inside the capsule to see what bacteria might be growing, even though the capsule didn’t look infected . there are some scenarios playing out:-i could have surgery again tomorrow  monday to put another implant in and take part of my back muscle/tissue and overlay it on the radiated skin.-the cultures could show bacteria and surgery would be postponed for up to a few months for the infection to clear. because over time, even a short 5 days, the breast capsule contracts, it will be difficult to put an implant in. so, we would go backwards and put in a tissue expander with the back muscle/tissue helping to close the incision.-then eventually after slowly filling the expander (again), i’ll have another swap surgery to get the silicone implant (again).
depending upon a few things, i’ll have 1 or 2 (or more?) surgeries. 
during my night in the hospital, i was super restless and listless. i wanted to be there and i wanted to be anywhere else in the world. i wanted to read and i wanted to sleep. i wanted visitors and i wanted to be left alone. it dawned on me that what this all comes down to is stamina, mental strength, or using all the tools i’ve ever been given to focus.
focus focus focus focus.
mike will keep you posted about surgery on tomorrow monday.  thank you for all the enduring support and notes and well wishes in the meantime.

xom