Thursday, October 23, 2014

Lucky. October, 2014 (in which i attempt to write again after a many year hiatus)

i haven't written anything, really, in years.  not even music.  i have been tired.  i needed a rest.  and needed to focus all my energies on being a mom.  but i feel some sort of obligation to make a breast cancer awareness post.  i don't even know how to begin.  so this is probably going to be rough around the edges. forgive me if i ramble.  or start drawing in crayon.  or creating diagrams with playdoh.  it's what i do now. 

october 2014 finds me in an entirely different state of mind than pinktobers of yesteryear.  i am a mom.  of a toddler girl.  i recently moved halfway across the country to a new life in sunny southern texas.  hill country.  where everyone is literally always smiling and giving you a hug.  so why i want to drudge up old wounds, i don't know.  i just think it's important to tell our stories. 

let's roll the clock back to 2002.  i was 31.  i was diagnosed with breast cancer.  i was lucky.

winter of 2001,  my husband (then boyfriend) found a lump.  in my left breast. near my nipple. and thought i really needed to have it checked.  up until then,  i was afraid to do self exams.  my grandmother had died of breast cancer. so i convinced myself that if i didn't do an exam, i wouldn't find a lump, and i wouldn't get cancer and i wouldn't lose my breasts.    i was young.  and worried about looks.   i thought that loosing a breast would be the absolute worst thing that could ever happen.

so in early 2002, i made an appointment with my doctor.  she performed an exam and couldn't find the lump.  i had to show it to her.  which made me cringe.  i was still in the don't feel, don't get cancer stage.  she finally located the lump and wrote me orders for a mammogram and ultrasound.

i showed up at the hospital with my paperwork, expecting to get my first ever mammogram.  but my plans were thwarted.  even though i had a script from my doctor, i was denied a mammogram. i was told that young breasts are too dense and nothing will show up.  i was offered an ultrasound instead.  and was told by the hospital that if there was something worth finding, an ultrasound would pick it up.  well, it didn't.  luckily, i had a follow-up with a surgical breast oncologist.  she didn't think that the lump was much to worry about.  especially since the ultrasound was negative.  and suggested we do a surgical biopsy to remove it.  if it was cancer, then it would be gone.  if it wasn't, it would still be gone and i wouldn't have to worry about it. 

well, hello.  i was a young woman.  i had never had any type of surgery or stitches or anesthesia.   i'd never even broken a bone.  and i really wasn't sure i wanted someone cutting on my nipple.  especially if there was probably nothing wrong with it.  what if i lost sensation?  what if it looked crooked afterward?  would i be able to breast feed someday?  no thank you..  i needed to think about it. 

well, the more i thought, the more i worried.  and after a month or so, i made another appointment with the surgical oncologist.  i asked her, before we talk knives, is there any way i could get a mammogram? even if nothing showed up.   just to cover all bases.  you know, before i'm scarred for life.  much to my surprise, they did mammograms right there in her office.   and much to both our surprises (me and my doc), the mammogram showed what appeared to be cancer.  lots of it.  tiny spider webs of calcifications.  in 3/4 of my breast.

from there i had a core-needle biopsy to confirm cancer.  but it looked promising.  DCIS (ductal carcinoma in situ).  which means the cancer was still within ducts.  had not become invasive.  is considered stage 0.  and was, according to the pathologist who gave me my results over the phone while i was at work, "the best kind of breast cancer to have".  like there is a good type of cancer?

the morning after i received the biopsy results, i met with my surgical oncologist.  unfortunately, since my cancer was so widespread, i was told that i would need a mastectomy.  a what? holy shit!  i went from being afraid of a teeny scar by my nipple to losing my whole breast.  this was just devastating. 

april 1st, 2002,  i had my mastectomy.  a modified radical mastectomy.  my breast was removed along with a bouquet of 10 lymph nodes (3 of which contained cancer), and 2 tumors that were not palpable.  the hidden tumors were far back close to my chest wall.  oh, and that nipple lump?  well, it turned out to be benign.  i really think it was my body's way of signaling an alarm that something was dead wrong.  i was lucky.  if i wouldn't have insisted on the mammogram... well, i'm afraid i would not be here today to tell you my story. 

i was lucky to have a boyfriend who stuck with me.  and took me to my chemo appointments. who shaved my head when my hair started falling out. and who told me i was beautiful when i was bald.  i know women who's husbands/boyfriends didn't stick around.   i was lucky to have a boyfriend who did not make me feel the least bit self conscious when i wasn't wearing my prosthetic breast.  who said it was up to me whether i wanted to get reconstruction.  that he found me attractive either way.  a boyfriend that put up a girlfriend that had to go through a chemical induced menopause in her 30s.  it wasn't easy for me.  but i'm sure it was no parade for him.  the hotflashes, mood swings, and lack of sex drive.  i was lucky to have a boyfriend that proposed to me while i was laying in bed with surgical drainage tubes hanging from my back and chest.  the remnants of my 8 hour lattisimus dorsi flap breast reconstruction  (muscle and skin from the back are moved to chest to create a new breast). 

i'm lucky to have had hair for our wedding.  in italy.  and to be surrounded by family and friends.  best day of my life.  up until then.

i am lucky to have been able to naturally conceive a child after the harsh chemotherapy and radiation and the myriad of post-chemo drugs i have had to take over the years.  i am lucky to have given birth to a beautiful healthy child.   second best day of my life. 

i know i am lucky by still being alive as a 12 year survivor. but i'm going to be honest.  i'm tired.  and every morning when i wake up, i am in pain.  physical pain.   a recent study has shown that the chemo i received speeds up the body's aging process by an average of 15 years.  so i'm pushing 60 right now.  and feel like it.   i have developed a number of diseases associated with the elderly (degenerative arthritis, pernicious anemia, multiple basal cell skin cancers, multiple precancerous colon polyps, and hypothyroidism to name a few).   if i had a nickel for every time the doctors said, "you are so young to have this." 

i know i'm lucky to be here.  but it sure doesn't make me feel better when i think about all the sisters i have lost along the way.  too many.  too young.  too soon.  what about their families?  their husbands and children?  i don't understand.  any of it.   

and as far as all the pinktober merchandise, it does raise awareness i suppose.  but if you really want to help, donate directly to a charity of your choice.  i prefer the ones that either help cancer patients/survivors by assisting with medical costs, transportation, food, rent, & utilities, etc..  or the organizations that are funding medical research.  we need better treatment plans.  we need cures.  not just one.  but many.  cancer is so unique to each patient.
i will leave you with this painting i did before my reconstruction.   it is titled "lucky" and it accompanies a song i wrote by the same name.  it's good to have an outlet for difficult emotions. 

lucky recorded by wormwood scrubs 2005

Monday, January 23, 2012

today is not the day.

PET scan is not in the cards for today after all. insurance approval glitch. found out at 3pm on friday. my case has to go before a medical review board. talked to hospital rep and she is pretty sure it will be approved. eventually. just not in time for me to get my monday's fortune told. i wish they hadn't waited until the last minute to figure this out. they did have 4 months.

so more waiting is what is in my future. but i'm getting pretty good at it. and to pass the time... celebrating rosemary's 6 month birthday. and her two front teeth!

Friday, January 20, 2012

monday's fortune.

here we are. at the end of the 4 month holding period. monday will be the greatly anticipated follow-up PET scan. a white-coated fortune teller will gaze into a crystal computer and all will be revealed. what will my future hold?

i've played so many different scenarios in my head. the spots light up. they have grown. but still not enough to biopsy. then what? wait another excruciating 4 months? or just blindly start treatment and see what happens?

or, there are more spots. maybe one close to the edge of lung that could be surgically removed.

or, the cancer set sail for a distant shore and landed on the aisle of liver or the coast of bone. skeleton. pirates!

or maybe the spots are stable. then what? which is good. but would still warrant future scans. ongoing. with me leading my family into the great unknown. forever.

but that is really what life is. the great unknown. forever. we don't ever know our exact future. we can get maps. and statistics. and pieces of information to help guide us. but life is a mystery.

i do hope, though, that this test gives me a clue. right now i feel stagnant. caught in a proverbial bermuda triangle. like bill murray in ground hog day. i need to move forward. i need an answer. whatever it may be.

and i have already picked out several wigs in case chemo is in order. my favorite is huge and blue with pink highlights and antlers growing out of a fabulous sequined headband. and no, i'm not thinking negatively by envisioning myself needing chemo. planning ahead helps me cope. and shit, even if i don't need chemo, i might just wear a a crazy wig anyway. and a ballgown. and have tea with rosemary and the goats. whilst we tell tales of pirates and gypsies. and ground hogs. especially the elusive belgrade bill. who does exist.