miracles, big & small

somehow, the entire month of march slipped by me. in pain or sick for most of it, i feel like i got nothing accomplished. so i am very glad to start a new month. my health seems to be steadily improving and after a couple of head adjustments with a skilled physical therapist, the rocks in my inner ear feel like they are back in place. no more feeling dizzy and heaven help me, no more trips to the emergency room!

march hasn't been all gloom, however. there have been a couple of decidedly brilliant spots. my interview day at lewis & clark felt just right at the beginning of the month. then just last week, my acceptance letter to the graduate program arrived.

and like magic, some jewelry sales have floated in without rhyme or reason. i guess abundance doesn't need a reason, it just is. the day the letter arrived, something shifted. suddenly, there was movement and last week delivered a wonderful flurry of orders. it was as if the universe was giving me a sign, a sign that somehow, the money part will all work out.

today, more good news.

for reasons i cannot begin to understand, my health insurance company that manages the COBRA plan has agreed to extend my coverage for an extra month, so i will have continuous coverage until my new plan through the college starts. i asked, expecting a immediate no, as insurance companies are not widely known to be in the business of compassion. for the past two weeks, they have been considering it and today, i heard officially that my request will be granted.

it is a miracle, all of it. just in the nick of time, i have swerved my speeding boat away from the rock. there will be no deadly collision, i am safe.

i am safe. relief hardly even begins to cover what i am feeling.

now to get my body to accept what my brain knows is true. i am going to be ok, i am being held and taken care of, once again. i can unclench my jaw and relax my neck. somehow, the answers i seek on the health front will appear as well. thank-you for all your caring and prayers through this time of worry, i appreciate you faithful friends so much.

i realized a couple of days ago that last thursday, that very terrible, long day i spent at the emergency room was my one year anniversary of completing radiation treatment. i am one year beyond cancer. many people begin to call themselves survivors at this point, but i don't like the term. i think perhaps i don't have to label myself at all. it is simple, really. cancer is in the past. i went through a cancer experience and now i am ready to focus my energy on other things.

this blog is a testimony of what an incredible teacher cancer has been for me. my dear readers, you all know what i have learned and how much change my life has seen. i would not wish this particular teacher on anyone and i hope i never have to meet him again in this lifetime. but if cancer does come knocking on your door, know this: you can prepare for battle and fight him like an enemy, or you can accept him as a teacher and sit down to listen.

honestly, i guess there is also a third option, which is to view him as a robber, come to steal your health, peace of mind and your best energy. there is no perfect way to handle cancer. i have experienced it as all three, enemy, teacher, robber...and i still have days where i look at the marks left on my body by cancer and feel robbed. but that gets me nowhere.

the only way to relate to having cancer that has brought me any shred of peace is as my teacher.

jumpy on the inside

needles and pins. i'm feeling all prickly with anticipation of a very important phone call this week. feburary has flown by in a flash, so by the end of this week i will hear if my application to graduate school has made it to the next round.

early last week, the graduate admissions folks let me know that my packet was deemed complete and had been sent on to the faculty review committee. each day, i wake up and think -today. they are reading my letters of recommendation today. the essay i labored over is being evaluated today.

i can almost hear the buzzing in my head, as part of my brain fixates on these facts 24/7. yet on the outside, i remain calm. i am staying busy in strange ways. projects on the web, research, studying the history of tequila, making collages. organizing my studio and my closets.

oh, and exercise. yes, i have been working out!

i dumped the awful gym where i held a membership (largely unused to my shame) for the past 6 months. and i started dancing on my mini trampoline, with joy, to beyonce. i also joined the Y, which is delightful and also, a very quick drive from my house. ah, the pleasure of having access to a womens only dry sauna again.

the good news i hope for with every fiber of my being is that i will be invited in for an interview with the faculty committee. i really don't know what to expect from that process, except most certainly, more needles and pins! all my hopes are actually pinned on being accepted to the program.

so of course, i am already thinking...whatever will i wear?

what i didn't know, then

what a difference a year makes. this blog is one year old today. the story of the turnip has taken us on quite a journey. i have learned so much. i have suffered great loss, yet also experienced incredible blessings. for instance, you, sitting there at your computer screen, you are a blessing.

thank-you for being there. thank-you for being part of my circle. i couldn't have made it through this year without you.

in honor of this anniversary, i want to offer a little something more than words. leave me a comment on this post and be entered into a drawing for something fabulous, made by me. i'll draw the lucky name on november 27, the anniversary of my surgery. this idea came from another blogger and thought it would be fun!

there are so many things i didn't know when i wrote this, one year ago. i still had some innocence. i still had respect for my surgeon from before, nearly eight years ago now. i didn't know the truth about phyllodes sarcoma, my turnip's medical name. i walked through the world thinking i was safe, that it was nothing, just a tumor.

and what is a tumor, actually? well, it is cancer.

a tumor is a tent revival of rogue cells. maverick cells, really. normal, sensible cells of the body that turn crazy, get excited, then clump together and reproduce. in the case of a phyllodes sarcoma, they reproduce quickly, these tumors can grow from nothing to the size of a baseball in just a few months. it feels like they grow overnight.

after my first one years ago, which was thankfully on the benign end of the spectrum, my surgeon was very reassuring. he didn't even call it cancer. he patted my hand and told me what anyone would want to hear. he said i was more likely to win the lottery or be hit by lightening than to get another one of these very rare breast tumors.

a year ago today, i sure didn't feel like i won the lottery. being hit by lightening only hints at how surprised and blindsided i felt.

what i know now is much, much more about phyllodes sarcoma than the vast majority of general surgeons out there and probably most surgical oncologists as well. what i know now, is that if my surgeon had done his research, he would have gone in for a second surgery and taken more tissue. he would have had to get clear margins around the tumor, to prevent it's recurrence. my pathology report even spelled it out, that recurrence was a probability. not just possible, but probable! so yes, those sneaky rogue cells he left behind eventually re-grouped and formed another tumor, the turnip i have been writing about this year.

funny thing about those rogue cells, they took seven years to find each other, to re-group and start reproducing like crazy, but when they did? those cells were stronger than the first time. the second tumor wasn't benign, it was more aggressive. the second tumor was on it's way to being dangerous. that second tumor meant business.

i found both tumors because i touch my breasts. i know them, i examine them. i treasure my breasts and even though i don't have breast cancer in my family, i did self breast exams. most breast cancers can be caught early, most will not get to the dangerous point if treated early.

here is my advice for every woman:

• no woman is too young for breast cancer. don't be naive, do your self-exams. don't allow any doctor to brush you off, or minimize your risks, because you are under 40. phyllodes specifically, even though a rare cancer, is more commonly found in younger women.
  

• trust yourself. trust your gut and your instincts and your heart. doctors are not gods. don't take every first opinion, do your research as fearlessly as you can. find doctors you can trust.

• know your breasts. love your body and learn it's landscape. tune in to the changes in breast tissue through your cycle and always self-examine the same time very month, ideally 5-7 days after your period starts. if you don't have periods, just pick a date on the calender and do it on the same day every month, without fail.

even though this year has been very difficult on many levels, i know now that i was lucky. i know that i was smart to continue my self-exams. i know that catching my cancer before it became a monster was really, really good. it could have easily been worse. for many women, it is much, much worse. women still die of breast cancer.

please don't let yourself or any woman you love become one of the unlucky. practice self-love through regular exams. be brave, face any fears you have around cancer and take care of yourself. you are the only you there is and this world needs you.

what i know now is that catching breast cancer early is still the best hope we have. it's in your hands. our hands.
images found here. thank-you, maryam, for posting them.

paying it forward

many of you have been reading here at turnip for months. you've followed my bumpy, emotional journey through breast cancer diagnosis and treatment, you've heard me crash over and over. you've also stood witness to me rebuilding my life. it's been a wave pattern of finding my way, losing my calm, locating my center.

this is life. up, down. storms and calm seas. cocooning and blooming.

i'm feeling all that stuff, those cycles on a daily basis. stabs of panic, washes of love. it's all still happening. the cycles seem to move quicker these days, maybe because my days are moving quicker. i feel like i am back to working all the time and struggling to figure out how to rest, how to best renew my body and spirit.

you know, i was raised to be a worker, not a rester. it's not the healthiest legacy.

i've made a choice today to do something i've thought of for a long while. become a lender at kiva.org. people have been so generous with donations to me through all my cancer days. and each month, the universe continues to provide. through sales of my jewelry, i am slowly and steadily catching up. it might seem counter intuitive to loan money to others when i have so much debt, and indeed a business loan of my own that i am struggling to make payments on. i guess it's a practice of trust. by making this small loan to someone else, i trust that what i need will be there for me. and it's irresistible - because at kiva program, the loans are so needed and the amounts are so small yet make such a difference.

i am committing to loaning $25 this month to an entrepreneur in the developing world. if you'd like to join me, i've added a link to the profile of the borrower in my sidebar. my first loan is going to a group of women in guatemala who will use the funds to buy thread and other supplies for their embroidery business. do go check out their profile and i bet you'll be as inspired as i am!

the image at the top of this post can be found here and says:

"everything changed the day she figured out there was exactly enough time for the important things in her life"

i think that quote has got to be true of money, too. that there is exactly enough money for the important things. today, i am breathing that in and letting it be true.

war, what is it good for?

ah, the sun is finally shining and where am i? inside, writing. still writing. a business plan is a long and complex project. each part seems to have a sticky place, a veil of fear i must screw up my courage to part it and walk through. so i am, walking through. getting it done.

a friend called me this week to say she'd just been given a cancer diagnoses. she wanted to see what advice i had. there was about 1,000 things i could have shared, of course. but to start, it all boils down to: do you trust your doctor? and find the best possible care your insurance will cover. hope for the best outcome, plan for the worst. surround yourself with experts.

oh, good god we live on a poisoned planet! it makes me want to scream! and it's not just the air, soil, water, either. it's poisoned mindsets and hearts. we live in a culture of war. have you noticed that whatever our leaders declare war on - it gets worse?

see the war on drugs, the war on cancer, the war on terrorism.

the language of war is everywhere. the cancer world i've been living in is full of it. it is a fake and forced-cheerful language rife with violence and hate. from fuck cancer hats to i made cancer my bitch t-shirts to daily stories of celebrities who are fighting a battle with cancer. cancer has become the ultimate enemy, the thing we do everything in our power to kill, kill, kill. all of the traditional medicine solutions to cancer treatment work to attack and kill it. and just like any war, there are civilian casualties as well. surgery, chemo and radiation kill healthy cells too.

the body pays a price.

as i recover from treatment, i've been feeling the weight of that price. not that i regret radiation so much, but it was like choosing between two regrets. i knew i would wonder did i do the right thing? either way, in the end, i decided i would wonder more if i didn't do the radiation. i am recovering nicely, by the way. each week brings better energy and a feeling that i am more like myself.

a thoughtful reader of this blog, who has since become a friend, noticed early on that i didn't use the language of war in writing about my experience. she sent me a great book, "speak the language of healing: living with breast cancer without going to war". it's written by four women with breast cancer and offers an alternative way to relate to the disease -a loving way to experience any kind of disease, really. i always assume that when bad things happen to us, there is a possibility it can teach us something. if we are open to learning. of course, there is a danger that we can view things like cancer as being "taught a lesson" by life, or god, or whatever is greater than ourselves.

a recent article in the new york times, thumbs up is no comfort, talks about our cultural approach to serious illness and what pressure there is to go into battle, suck up your negative feelings and flash that thumbs up to reassure people you are ok. even when you are not ok. i found the link through one of my favorite blogs, aiming for grace. she has an eloquent response to the issues raised in the article, do take a moment to go and read it.

turnip for me has been a place to fall apart all these months and you out there reading have allowed me to feel, process and become ok with how i experience breast cancer. everyone has to find their own way through illness and difficulty in this life. it's been such an incredible blessing for me to have you helping to hold this space of healing. it's been a while since i said thank-you. yet i think it daily, how grateful i am for you, following my story.

thank-you, thank-you, thank-you. these shabby words can't say it strongly enough.

this is a ramble today!

where i started, part 2

continued from yesterday...thank-you for your sweet, supportive comments...

some essential history to understanding this story.

september 2000: at the beginning of my 34th year, i hit the very bottom of the bottom. i was so depressed. my anxiety level was sky-high. i had eaten my feelings and self-medicated for 3 years, since the break-up of my most serious and promising relationship to date. i am 5 feet, seven inches tall and then weighed 215 lbs. every room in the the house i bought was a construction site because i had started so many projects and then struggled to finish them. i was teaching full time and worried everyday that the students would find out i really didn't know what the hell i was doing. my mom and i were not on good terms.

i needed professional help and was so down, i was open to medication for the first time.

i found a good therapist and went on meds. brilliant woman, she accomplished what scores of others hadn't. after 22 days, the medication took full effect and the perfect storm in my head turned into a calm sea with birds soaring above in a blue sky.

yes, it was that dramatic of a change. i was very lucky, the first medication we tried was a perfect fit. i started really working through the emotional issues behind the weight problem. i healed alot of anger and put the past in a rational perspective. (really, the meds should be named rational.) right away, i lost a few pounds just from the dramatic drop in my anxiety level. a few months later, i saw my regular doctor for a physical. my blood sugar was at pre-diabetes level, my cholesterol too high. she gave me 4 months to lose 20 lbs. and change those numbers.

over the next 2 years, i lost 75 pounds the slow and healthy way. i joined a gym and spent many hours on the elliptical trainer. that first spring, i was losing weight, i was planning a trip to NYC with my art students. my doctor was happy with my progress. i was feeling better than i had in years. as the weight dropped, my breasts naturally got smaller and while trying on clothes in the dressing room of t.j. maxx, i found a lump. a large lump. yep, it was breast cancer. (little did i know, then, that was only the first turnip)

i took it in stride, scared but naive. my surgeon in that small michigan town didn't even call it cancer and said there was almost no chance it would come back, ever. his lack of experience with the rare phyllodes sarcoma is the reason i am here now in this mess. he should have done his research and a second surgery to get clean margins around the tumor. i shouldn't have trusted him. when my current oncologist, dr. naik, looked at that pathology report from 2001, the first thing she noticed was this sentence:

"the tumor has irregular borders and is present at the inked surgical resection margin in which case there is a probability of future recurrence."

holy shit. it was bound to come back, with the phyllodes cells he left behind.

sad to say, it's too late to sue for malpractice. the statue of limitations is 6 years. i've been really angry about this the past few days. there is no recourse for this damage and facing the wreckage of my body, i want to assign some blame.

i will say it here: dr. mark a. kowalski, i blame you.

ok, i honestly cannot blame him for the 50 lbs. i've gained back. that was all me, those pounds are proof of the life i've lived in the past 3 years. it's a sorry case of too much work (7 days a week) for too many years and no time made for exercise. starting a business on a shoestring budget takes it's toll on your life. i actually eat a very healthy diet and rarely use food as "emotional medicine" anymore. but not exercising, aging and not resting/sleeping well for so long really did a number on my metabolism.

i could be a champion weight-gainer, it's so easy for me.

yet, when i quit my day job in october, i was actually excited about getting back into a exercise routine and losing the weight i had accumulated. if it wasn't for the lack of breast at the end of the weight-loss tunnel, i think i would be feeling pretty optimistic right now. what a difference a boob makes.

well, yesterday i took my first "power" walk in a long time. just 3 laps around the track, which took me 25 minutes. a slow start, but a start nonetheless. i've put it out there now, so you all are in on my struggle. i thought long and hard about it, making this public. frankly, there are very few people i could tell this story to in person, the shame is too great. if you do see me in person, please understand how sensitive and awkward this is, please don't speak to me about it. rest assured, if i feel comfortable talking about it, i will. i do hope you'll hang around and see how i somehow find my way (emotionally and physically) from exhibit A to exhibit B.

i don't know myself how it's going to go. all i know is i have to try.

my mom: 33 years after cancer

i'm in the highest risk group possible for the skin cancer melanoma. a fair-skinned redhead with many freckles, a family history and some irresponsible, severe, blistering sunburns as teen. i match every factor on the list.

it hit me today. my mom got malignant melanoma and 33 years later, is still healthy. she's alive and well after cancer. she survived weeks in the hospital, undergoing experimental treatment and major surgery. my mom is here for me because she lived through cancer herself.

you know, i never thought i would get breast cancer; i was certain, however, that i would get skin cancer. the year i turned 31. the age my mother was when she got cancer. that was the year i was sure it would strike me too. since i was a child, after my mom recovered from cancer, i've made regular visits to the dermatologist to get checked over. in fact, after her recovery, she hauled my younger brother and i into her doctor's office and had every single inch of us checked. it's a ritual i have repeated many times as an adult, whenever i had health insurance.

my mom's cancer was stage-3 malignant melanoma. i was young but still remember it looked like a fat, black watermelon seed pasted to the back of her leg. mom isn't as fair-skinned as i am and as a teen in the 1950's, she tanned with baby oil and tinfoil, just like all her friends.

they didn't know then, the connection between tanning and skin cancer.

she spent several weeks in the hospital. her doctor had just returned from the cancer center in houston, texas with training in a new kind of treatment. basically, they took the blood out of her leg and for one hour, pumped super-strong chemotherapy drugs (pure poison, really) through those veins instead of blood. then another hour of pumping a cleaning solution to rinse out the chemo. finally, they put her own blood back in the leg. she was very lucky. the treatment worked brilliantly. and the cancer had not spread to her lymph system yet. the man who shared her hospital room died of the same disease. yet my mom walked out of the hospital that january day and has been cancer free for 33 years. you don't hear alot of stories like hers. sadly, we hear most about the ones that didn't make it.

i wanted to tell her story here because we all need more good news and she is an amazing miracle!

can you imagine how our lives would change if we had lost her to cancer? at the time, we were a family of four kids and at eight years old, i was the eldest. my baby sister was just one, still nursing. like many families, our mom was the emotional glue holding it all together. i remember it as a very lonely time. my did still had to go to work and visit mom at the hospital. thankfully, we were part of a very supportive church and those ladies came to our house everyday with food. they also cleaned and helped keep the house going. you can get too much of a good thing, however; i developed a life-long aversion to casseroles, the comfort food of the 1970's.

maybe it's because my mom has been through so much personal trauma that she is able to support me so well during my own crisis. that certainly is a factor. but a much bigger factor than her past experience, is her love for me. what an incredible blessing.

thanks, mom for being just what i need right now. i love you.

cancer doesn't discriminate

i found a great website this week called circus of cancer. the author is a breast cancer survivor and the site is a guide for the friends and family of someone with breast cancer. in fact, the guide is written for you! what i love about it is that she presents facts and answers questions so clearly, yet the whole vibe of the site is very whimsical and happy. there is also photographs of the process of radiation, so if you want to see an example of what it looks like, the site is a great resource. click here to check it out, you'll be glad you did.

actually, i'll be glad you did. leave me a comment and let me know what you thought.

I've been telling more people about the breast cancer lately. people outside my circle of friends. folks that i meet in the course of my work day either at the rental property i manage or just out in the world. as i do this, i realize few people know what to say, it's a very hard thing to respond to. thinking back, i now see that before this experience of my own, i might have responded insensitively to someone telling me the same news. i might have chimed in with my story of my aunt who died of lung cancer at age 48, not realizing that isn't comforting or helpful for someone with a fresh cancer diagnosis to hear.

it's hard to know how to respond to bad news, frankly.

up until now, i've been afraid of dropping a "cancer bomb" on someones day. i couldn't talk about it without crying. just this week, i am starting to find my sense of humor again. although truth to be told, i still cry at least once a day. for the first couple of months, part of me felt ashamed for getting breast cancer. on some level it felt like a judgement on how i've lived. in this country, sickness is often seen as some kind of weakness, even as a indicator of some moral lapse. i blame the calvinists and my midwest background for those feelings. cancer, like death, doesn't make judgments. saints get it, bad people get it too. fat people who live on fast food and athletes who eat only organic. personally, i think that living on an increasingly poisoned planet has much to do with soaring cancer rates.

when i tell someone, i secretly watch and wonder if they are looking at my breasts when i mention it.

emotionally, i am way past ready to look normal and balanced in clothes. i am tired of wearing clothes that hide my curves in an attempt to disguise the new lopsided me. i'm nearly healed enough to start wearing my normal bras, with a prosthesis inserted on the one side. i'll be wearing that for nearly a year, until reconstruction next december. thankfully, there is a wonderful speciality lingerie shop here in portland, called just like a woman that has everything i need. they are also professionally trained to fit for women with partial mastectomies like me. they have everything from pretty bras to sport bras and they will bill my insurance! how cool is that?

today i go in for my 2 hour appointment to set up for radiation treatments. i'll be getting four tattoos (not as exciting as it sounds) and having a body cast made. stay tuned for a post on how that all went down.