beauty in the time of quarantine

Havent felt like blogging since the world stopped spinning round. life is strange.  We are all in this together but apart.

No cancer updates.  I was supposed to go in for a followup with my oncologist in March to test blood levels but appointment was postponed until June due to covid-19.  I am just going to assume everything is fine.  My last scans in December had shrinkage so I am going to believe that the medicine is continuing to shrink my lung nodules.

Meanwhile, I have been thinking.  Trying to make sense of what is happening.  And I was thinking about fear.  And more specifically, the fear you get as a cancer survivor.  That fear of recurrence.  How you worry about pains in a different way than other people.  That cough that wont go away.  Is it cancer?  Bronchitis?  Allergies?  That splitting headache.  Is it a migraine or brain metastases?  Last year, my fear came true.  Now that Covid-19 is here.  It is like the whole world knows what it is like to live in the fear of recurrence.  To be so close death.  To have it lurking on the periphery.  To worry if that sore throat is just a sore throat from a cold.  Or corona?  Is that cough just from allergies?  Or the Big C.  Which C?

This is all so scary.  And you would think that I would be more adept to deal with this kind of fear.  But Covid-19 is scarier than cancer.  At least it is to me.  Cancer isn't contagious.

I do ok most days.  As long as I am home.  And my husband is home.  And my daughter is home (well, she’s always home now).  If we are all here.  And we can feel the sun.  And we can walk around on our little ranch.  And we have food.  And wine.  I am ok.  But if someone has to leave.  Panic sets in.  Or I read the news.  And then more news.  And I see the numbers.  And I just don't know.

Today, I lost my shit.  It all started when... I knew I had to LEAVE THE HOUSE to pick up something from my daughter’s school.   Followed by a simple request from my daughter for fast food.   She hasn't had anything like that in a long time.  She hasn't had lots of things in a long time.  Like contact with other children (except for on zoom).  She hasn’t played with another child in over a month.  She just wanted a treat.  A slice of former life.  She wanted...  Dairy Queen.  I know.  It isn't healthy.  But it is the only fast food drive thru in our little town.  And it would bring some some light to a f’d up situation.  Back before the pandemic, we would stop by DQ on the way home from school for a treat.  So, it would make sense she would want it now.  We were going to be near her school.  However, the thought of going to a fast food drive thru during the pandemic made me break out in all kinds of sweats.  I wondered how DQ was adapting to covid-19?  I googled DQ and couldn't find any info on their website.  What kind of safety precautions were they taking?  Were they wearing masks?  Gloves? Could you pay in advance?  How did their employees feel?  Did they feel safe?   Fear snuck in.  Fear sunk in.  And I went down, down, down the rabbit hole.   I went to a very dark place.  I let myself imagine the worst case scenarios.  What if me and my husband got sick at the same time and had to be hospitalized? Where would my child go? What if we both died?  All this risk.  And for what?  Junk food.   I got hysterical.  I cried. I sobbed.  I cried some more.  Then, I sat still for a bit.  And then, I made some masks (thanks to Matthew McConaughey and his Bobby Bandito DIY bandana mask tutorial).  I felt proactive.  Productive.  And then, I thought.  I remembered we have ANOTHER fast food place in town.  We have a... Pizza Hut.  I googled them.  They had a covid statement on their website. They had online order and pay options.  They had curbside pickup.   My daughter was excited about getting breadsticks and smiled!  Maybe the risk was no less.  Maybe it is just as dangerous to order any kind of takeout.  We just don't know enough about this disease yet.  But if there is anything I learned from having cancer is that life is fleeting.  And happiness is so important.  Allowing yourself to be happy.   So, we wore the masks.  We got the pizza.  We washed our hands when we got home (actually, I washed mine like a gazillion times).  My daughter and I snuggled on the couch.  We ate the glorious junk food and watched “An Unfortunate Series of Events” on Netflix.  And for a moment, we were happy.

Speaking of happiness...

Taking a walk outside on our land is my comfort food.  When I feel stressed.  Sad.  Angry.  Pissed.  Hopeless.  I go outside.  And my whole body and mind changes.  I feel the sun.  I see the sky.  I hear birds.  And of course, all our goofy animals.  Hannah, the horse.  The GLOPs.  The chickens.  They greet me and make me smile.  I go outside and try to notice something small.  A tiny fossil.  A bug.  A little lichen.  Beauty is all around me.  Beauty in the time of quarantine.  So, Ive been trying to take photos of the beauty I witness.   Here are a few...

Note:  I have tried to write this short blog on and off for the past 24 hours.  It is hard to get a chunk of time to formulate thoughts into words and on to a page these days.  It is challenging (to say the least) while in quarantine in a tiny house with an only child who wants to tell me everything she is thinking or doing or thinking about doing always.  By the time I finished writing this,  I almost trashed it.  It lost the spark.  I didn't feel that way anymore.  By now, I feel like... why am I writing this?  Who cares?  Why would anyone read this?  Who am I?  What is the point?  I don't know what the point is anymore.  But I miss writing.  I miss creating.  And I miss connecting.   Maybe that is enough.

Getting it sorted out, sort of.

So, I’ve been on Tamoxifen now for about a month and am finishing the process of sorting out another medicine (non cancer) that had to be changed because it interacted with Tamoxifen.  And I feel like my body is starting to adjust.  I’m feeling more normal.  But let me say, Tamoxifen is causing ridiculous hot flashes!   And I live in Texas where it’s hot already! So, in a heated frenzy, I have DIY’d all my T-shirt’s into tank tops in a little design I call the “Larissa Tank“.  I have been getting lots of compliments on them and people keep asking me how I made them.  So, I might do a little workshop on how to transform old t-shirts into the “Larissa Tank” - a wine and scissors event🍷✂️!    Which sounds dangerous but fun.  Stay tuned for more on that enterprise.

The Larissa Tank out flying a kite.

But I do feel like I am adjusting.  I am feeling stronger. I just rest when I need it.  My body tells me when I need it.  I tried to ignore it at first.  But my body knows better.  It slams on the breaks and blows a whistle.  And I take a little rest or nap and I’m good to go.

Speaking of going, I had the pleasure to go to the Dominican Republic for 5 days at the beginning of May with my husband.   He needed to go for business. And I was very glad to be able to join him.  It just so happened that it coincided with our 14th wedding anniversary.

Here are some pictures from Punta Cana, Dominican Republic.  The water really is that blue.  I’m so grateful to have had time to relax, feel grounded by the sand on my feet, and reconnect with my husband.

and the beat goes on...

so, as my handful of readers out there already know, this year has been a booger of a medical roller coaster. persistent cough. shortness of breath. discovering lung spots. discovering ruptured implant. replacement surgery. cancelling shows. putting music on hold. monitoring lung spots. thinking cancer is back. praying for stable spots. and trying to keep life as normal as possible in the meantime. and finally it's memorial day... and i get results of latest scan. spots are gone! not just stable. but miraculously gone! celebration!

still, in the back of my mind, i'm thinking, why do i still cough? why do my lungs hurt? why do i get so tired? yes, it's not cancer. but what the frak is it? and then yesterday, i get the actual printed copy of PET scan results in mail. and guess what? report states that i have mild centrilobular emphysema. i must admit, it's a bit scary, but nothing i can't handle. at least it explains my symtoms. and i've caught it early. i don't smoke anymore. i eat great. i get plenty o'exercise on the farm.

i would like to thank everyone who has supported me this year. those who came out to the benefit concert. those who sent cards, food, smiles, jokes. i'd be lost without you. i'd especially like to thank my husband. who always seems to be overshadowed by my health. if you see him, give him a hug. tell him he's the cat's pajamas. and know that he is my rock. my rock & roll.

speaking of rock.... wormwood scrubs has entered the studio. watch out! new album has a song that is over 20minutes long. and look for us returning to the stage later this summer. can't wait any longer!

i leave you with a few pics from the memorial day weekend. sam, kate and ophelia came down to celebrate. ophelia and kate had fun visiting all the critters. sam, had fun recording. and i had fun admiring my hand-decorated commemorative celebratory bottle o'beam.

ta da!

kate and ophelia throwin' rocks in the pond (good ol'fashioned fun)

rock n roll mirror

ophelia got goosed!

the two sams

pure joy!

april fools day on me.

so, i suppose it was ye ol' mother nature who played a trick on me this year. out of nowhere appeared a strange and unsightly growth under my arm. right in a spot where there had been a small growth/bump/thingy for years. i always thought it was scar-tissue from one of my zillion surgeries. jason noticed the dramatic change first. suddenly, it looked like someone had put a cigar out on my chest. it looked freakish enough that we decided to photograph it. just in case. good thing, too. cause by the next day it had changed. grown. looked uglier. meaner. and i was left to ponder the possibilities. skin cancer again? necrotic tissue. some horrific flesh eating disease most likely transmitted from an alien goat?

with kindly suggestions and gentle guidance, i decided to go to the ER. in case i was in need of quarantine or an exorcism or something. but thanks to my cancer x 2 history, the ER staff here in farm-land really didn't want to touch me. and i think my proud-flesh scared them a tad. so they insisted i drive out to the big city to see my surgical oncologist.

i hadn't been to the oncologist since i moved to belgrade. i really hoped those days were behind me. but here i was on a road trip to cancerland, the treatment center where i had spent far too much of my time in the past.

my oncologist really didn't know what to make of the whole anomaly. perhaps aggravated scar tissue or a benign growth that had ruptured. she ran some blood work, thankfully. i had been wanting a CBC anyway. you know, just for sh*ts & grins.

but as the title of this post alludes, this was all just some cruel prank. mother nature decided to "get me". blood tests came back fine. since my onc didn't really think it was the big C, i have yet to find out what this armpit creation is. it has morphed once again. it's not nearly as putrid looking. i've been keeping up on photo documentation. because, i am a photographer. and well, i'm half-nuts. maybe i'll have an exhibit of mini-me someday.

4/8/09 update: i am scheduled to have a tiny tiny biopsy done at my onc's office on 4/13. probably nothing. but i'd rather know fo sho.

what a long strange week this has been.

the week began on the tail-end of a 4 day full-blown migraine. no doubt brought on following my pre-op appointment where surgeon told me i could only take tylenol for the next two weeks. i swear this happens every time. the power of suggestion is suggestively powerful.

to relax, i try to watch a movie. "the departed." not exactly relaxing but definitely keeping my mind off my head. but we can't watch the movie because there is this low frequency hum that is becoming increasingly overwhelming. we turn off the sound on the tv but it's still there. my husband investigates. it is coming from the middle of the street. the ground is actually vibrating. and the street is covered with bats. they can't fly because of the hum. one bat flaps across my husband's foot. the noise and vibration continue for about a half an hour. we're pretty freaked out. since we really have no idea who to call in this type of situation, we call our drummer. apparently this was the wise choice because within minutes the sound is gone. we continue our movie. but i'm worried about the bats. so i send jason out to check on them. the street is clear. they must be ok.

by tuesday my head's feeling better and i'm looking forward to a good night's sleep. i drift off just in time to hear what we think are fireworks being shot outside. the police come. block off the street. put tape around my car, my husband's van and a neighbor's truck along with the hallway that runs between the two houses across the street. turns out it wasn't fireworks. but guns. we have no idea if someone has been shot or killed. the police collect two types of bullets. one being from an SKS (another version of an AK47). they are apparently looking for a girl who lives a few doors down.

the next day i'm very sleepy. can't find any information of the shooting anywhere in the local news. like it didn't exist. except the police tape was still up across the street when i left for work. i spend the day looking up country real-estate on the internet. we're getting out of the city. i've had it.

which brings us to today. the day i get my face cut open and sewed shut while only being under local anesthetic. first they shoot you up with some kind of numbing medicine. which ironically hurts. and then they blindfold you. then the surgeon cuts around your cancerous lesion while making small talk. then the cauterizer burns away the oozing flesh while creating a horrible smell. then they tape you up and make you wait while skin is sent to the lab. luckily my husband is there with me. he makes me laugh. we pass the time (about an hour or so). the results come back that there is still some cancer left. i get numbed again. more blindfolding. more cutting. more burning. then more waiting.

finally i get the all clear. thinking the worst is behind me i saunter back into the operating room. that's when the real shit goes down. first they ask me if i want to see what my wound looks like before they sew it up. since i'm curious like a cat, i naively say "yes." holy crap! i have a gaping hole in the middle of my face. a perfetly round hole that goes strait back into red bloody flesh. it's a lot bigger than i was expecting. almost the size of a dime. i felt like i was in part of some freakish experiment. thank god they put the blindfold back. they numb me up some more and start cutting. they have to cut more skin in order to close up wound in a straight line. unfortunately i can feel my skin being cut. so more numbing which again ironically hurts. then more burning. which i can feel as well. so more numbing. then more cutting. and sewing. and burning. and then we are done.

before they bandage it up, they ask if i want to see the scar. of course i say "yes" again. like an idiot. that's why cats have nine lives. i look in the mirror and there is this big ugly mean looking scar staring straight back. my face is swollen and bruised. and that's when the tears start. i just loose it. i'm tired of scars. and doctors. and surgical lights. and the smell of beta dine. let's face it, cancer sucks. it just does.

but that's just today. i'm sure tomorrow will offer a new distraction. probably something spectacular to cap off such a bizarre week. perhaps a unicorn grazing in my backyard covered in snow-flakes made of diamond dust and my dogs will speak and my cats will fly.

just call me cancer girl.

so here i am celebrating 5 years of being cancer free, sipping on sangria, watching the sunset and enjoying my summer when i get the call from my doctor. and i hear the damn "C" word again. a lesion on my face that i recently had biopsied came back positive for basal cell carcinoma. the good news is, according to my surgeon, "it is the best cancer to get if you're gonna get cancer." it is very slow growing and almost never metastasizes. bad news is i need more surgery. and i'm gonna have about an inch long scar on my face. i suppose it'll make me look tough. or even more like tina fey.

the doctor said it is nothing compared to everything i've already been through. absolutely nothing to worry about. easier said than done. its much easier to freak out and hyperventilate and cry and worry about what is going to go wrong next. this cancer was easy to spot. it was staring me in the mirror every morning. but what about all the shit that could be mutating deep inside me, hiding behind bones and organs? i start not trusting my body.

i don't even fit the criteria for having skin cancer. i'm not blond haired nor blue eyed. i don't worship the sun. i don't live close to the equator. and i'm not old! the nurse today told me i was a baby compared to the people they usually treat. i told her i've heard that before.

i know this is just a bump in the road. and i'll have a cool scar to add to my collection after this is all said and done. and i'm strong and have a loving husband and supportive family. and i'm gonna be fine. but right now i just want to run away & stick my feet in the sand & sip a fancy drink with an umbrella & listen to led zeppelin IV over and over again. or join a carnival.

the dangling shoe.

next weekend i will be celebrating my 5 year cancerversary. that means that 5 years ago i got the dreaded call from the lab that said, "you have cancer." and from that moment on, i became a survivor.

my first cancerversary was probably the most meaningful. it meant that i survived my year of treatment and hell. i came out from the other side. my hair was beginning to grow back. i could finally taste foods again. i had energy. and i was full of life.

every cancerversary since then has been wonderful. but the most anticipated for me has been number 5. that's when you really start to beat the odds. many statistics are based on 5 year survival rates. i remember being in my oncologists office way back when. she was reviewing my chemo options. she jotted notes on the back of the "welcome to chemotherapy" pamphlet. i remember staring at two numbers. 50 and 5. i had a 50% chance at 5 year survival. those were my odds without fighting. if i did chemo, radiation, and tamoxifen, my survival odds were greatly increased. so, i fought.

and here i am now about to turn 5. i should be happy. but something in the back of my brain says, "don't be too cocky. don't count your chickens before they hatch. don't jinx anything." i knew my annual mammogram was coming up this month. and the old "what if" kept invading my brain. the anticipation of the other shoe falling.

this falling shoe has even broken into my dreams. just the other night while i was sleeping, the radiology technician burst into my room to tell me they found a suspicious spot on my film. i started crying and saying, "but i just had my hair done! i don't wanna be bald!" i awoke and looked in the mirror. i said, "i'm still here. every thing is going to be ok. it was just a dream." that is, until yesterday.

yesterday was my actual mammogram appointment. i put on my highly flattering hospital gown and sat in the waiting room. then i was called in for a chest xray. this seemed to go fine. and i was sent back to waiting room. next i get called for my mammogram. some films are taken. and again, i wait. but now they call me back for another chest xray. hmmm... i start to worry. i am taken back to waiting room. the tech says if everything is ok, they will have someone from my oncologist office (down the hall) come get me to go over films and have my regular follow-up. hurray! someone comes and escorts me down the hall. i'm thinking that i'm all clear. i meet with onc. things go great. she does a physical exam and draws blood. then she asks "did you have a mammogram today?" i say "yes". she says "let me go look at your slides". and that's when radiology bursts in to say i need to have more pictures taken. this is also when my heart drops. apparently radiology has found something of concern. shit! i close my eyes and open them again. but i'm still here. it is not a dream.

i have more pictures taken. the mammography tech says these pictures will be a little more painful and will take longer. it was like my breast was auditioning for a contortionist at a freak show. i had no idea it could do THAT?

and what do my breast acrobatics earn me? a trip to the ultrasound room. i meet yet another technician. she rolls her magic ultrasound wand around. then leaves the room. i close my eyes again. open them. shit, i'm still here. ok, so now the head radiologist comes in and i get ultrasounded again.

they have found what appears as two cysts that have fused together in a dumbbell shape. normally cysts aren't a big concern. but they are also surrounded by calcifications. shit, shit, shit. calcifications are what led me to my original diagnosis. sometimes, they are pre-cancer. and in my case before, they weren't only pre-cancer, they were cancer that had become invasive and spread to my lymph nodes.

i finally get to change out of my beautiful gown. i talk to my oncologist. and find out that due to the calcifications, needle biopsy is not an option. it needs to be surgically removed. but my surgeon's on vacation for the next week. so i have to wait until february 26th to meet with her.

so here i wait. i am still going to celebrate my five years next weekend. and i'm going to party with friends. i'm going to sing and dance in celebration. and i'm going to try to ignore that size 7 pink patent leather shoe that's dangling right in front of me.

the cancer void.

today was spring cleaning day at work. our annual audit was complete and it was time to purge old files. as i was gleefully throwing mounds and mounds of AP reports into the trash, i realized that all this work was done in 2002, the year of my cancer. it was such a peculiar feeling. like a time warp opened up. i looked at my handwriting and thought, the girl who wrote this was bald, was missing a breast, was nauseated, was fighting, was tired, was drugged, and was scared. she didn't know it then, but she was beginning her transformation. she was changing from the shy, quiet girl who took things for granted, who worried a lot about the small stuff, and rarely ever took chances. i wanted to go back and tell that girl not to worry. that she was only entering a coccoon. a cancer coccoon. that a few years from now everything would be ok. she would become this crazy butterfly fool that won't shut up, that goes skinny dipping, that drives giant vehicles, that laughs way too loud, and that doesn't pass up potentially awesome experiences, and that gets married and lives happily ever after. it is easy to forget the me i was before my cancer. i blocked out a lot of that time because it was hard. because i was so sick. because it was a horribly shitty time. and because it's so much more fun to be alive now. i have never been as comfortable in my own skin as i am today. even if this skin is scarred. even if some of it isn't in the same place as it was. my old skin has been left behind in the cancer void.

just before the business office trash was taken to it's final resting place, i managed to save these two calculator receipts as mementos. fitting, i think.

young women's breast cancer symposium.

bald me with pupps.

tomorrow morning i am speaking at the young women's breast cancer symposium sponsored by the siteman cancer center in st louis. i have been asked to be part of a panel discusion to discuss the challenges of life after cancer. i am going to talk about my support group "sisters in survivorship", reconstruction, and healing thru creative arts (painting and music). i'm very nervous. i'm not much of a public speaker. but i suppose if there is anything in this world i could talk about it would be my own experiences. who would know about it better? of course this realization doesn't ease the nerves. but xanax will.

wish me luck.