Thursday, November 29, 2007

finding support in many forms

i finally got a whole, good night's rest last night and am feeling much better this morning. way better, in fact, than i expected to feel less than two days after surgery. i have been diligent with taking painkillers on the schedule and using ice for the swelling as well.

in the middle of the first night after surgery, i woke and felt like my breast needed support, some physical support. funny that you can't really plan ahead for the perfect functioning bra. not knowing the size of the breast i would emerge from surgery with and exactly where that pesky incision would be. all my stiff cup bras, which would have provided good support for the weight of the breast so it doesn't pull on the incision, they hit in the wrong place, their slightly bulky edge matching up exactly with my incision. och!

so we tried my soft lacy bra, which isn't really enough support, but also doesn't put any pressure on the tender and painful incision. yesterday i sent mom to the store to get the pain meds and a wide, stiff ace bandage to wrap around my torso. guess what? those old-school bandages are hard to find. she probably would have had better luck at the army-navy surplus than she did at the pharmacy.

so i ended up holding my breast all day to support the weight, not the most relaxing thing. until bedtime, when suddenly from my fuzzy, medicated brain, came a flash of memory. i knew i had been wrapped with a large ace bandage after the last surgery, six years ago. i reached into a box in my closet and voila, there it was!

small miracles make all the difference. i am certain my good night's sleep was due in large part to having the breast be secured, finally. and the sheer exhaustion of passing two nights without much sleep previously.

today, mom and i go out to the pacific ocean to a little cottage right on the beach. we will be loaded down with warm clothes, good food, movies and books for a couple of relaxing nights. for me, being next to the ocean is like a return to the womb. it's the womb of the earth and never fails to comfort and ground me.

i did gather up my courage and face the new breast in the mirror yesterday, but that is a story for another day. i will be away until saturday, but then will post here again. this turnip story doesn't end quite yet. we will be waiting to here from pathology on the results of testing the tumor, an answer that likely will not come until monday.

thank-you for all your sweet and supportive comments here and private emails. i am deeply comforted by all of you out there, sending me love and light. i know it may feel like you aren't able to do anything to help, but please believe that the words you send my way and the healing thoughts, those are precious pieces of my healing. you have no idea how vital what you are doing is to the path i am on right now. thank you so much.

Wednesday, November 28, 2007

relief + gratitude

the turnip is gone! pain and soreness remain, but those will pass. it was a very, very long day yesterday and i feel like my breast was hit by a mack truck. i am filled with relief that this part is over.

i didn't get to talk to dr. naik after the surgery (she talked my mom) so i don't have clear details. what i did hear, second hand, is that she was very surprised at how large it was. dr naik compared the size to a satsuma
mandarin orange! it was all the way down to the muscle on the chest wall, so a great portion of it was hiding from our earlier screening.

i have not dared look at how much is, or isn't, left of my breast. i know it's considerably smaller. more information and thoughts on that later. it's a lot to process, emotionally.

right now, mom has gone to the pharmacy to get the pain meds, because the surgery was 3 hours late starting, by the time we finished, the hospital pharmacy was closed. i was home last night in my own bed, but didn't sleep much.

so i'll sign off now with a deep thank you for all your prayers, messages, healing energy and love. all those hours waiting yesterday, i could feel the circle of light surrounding me, coming from near and very far, to hold me. it was such a profound feeling of being taken care of and i received it. bless you all.

Tuesday, November 27, 2007

the silence within

dear friends, today is surgery. i will be at the hospital in one hour.

the meeting with
dr naik and martha yesterday was illuminating. i learned more about these phyllodes tumors. that they are cancer, they are most certainly all breast cancer. and their malignancy is measured on a scale. miles of gray on that scale. so my tumor six years ago was classified as benign because is was the least possible malignant. that is the bare truth, medically. what is comforting, is that this is a type of breast cancer where the cure is surgery.

today, i get the cure. i am very, very grateful for that.

yesterday we prepared, my mom and i. she cleaned my apartment, which had fallen to ruin these past few weeks. i did mountains of laundry, grocery shopped for our days at the ocean and in the evening, went for a healing
reiki session. it was the best thing i could have done yesterday. jessica, my reiki master, helped put the turnip in a spiritual and personal growth context witch was really powerful, very calming. as i enter the operating room, i am looking at the tumor a little differently, as a teacher on my path. they say the final stage of grieving is acceptance and for today, i am there. i will write more about this in greater depth another day.

at 10 am they will insert a needle marker in the breast to guide
dr naik directly to the tumor. by noon, i will be in the operating room. the surgery should take a little over and hour. then i will be in recovery and sent home with painkillers later today.

send my light and love, dear ones. thank-you for holding me so well during this whole thing.

Monday, November 26, 2007

one day and counting the hours

actually, i am trying to distract myself as much as possible. the turnip almost feels leaden in my breast now, like it is getting heavier by the day and more solid. i can feel it has grown larger these past few weeks. now, the tumor knows the countdown to excision is now within 24 hours. it is about to be forcibly removed...

today i will meet with dr. naik for the last time before we see each other in the operating room. so she can address my final concerns and questions. i need to make clear what i want to happen, what margin of safety to cut away. strange to think about the margin, the padding around the tumor as the thing that doesn't protect, but instead puts me in line for another tumor. those margins need to be cut out to protect me. i usually think of cocoons being protective, but in this case, the naked empty space is the best insurance against another recurrence. those margins protect only the turnip.

this afternoon i will see my reiki healer for a session. to clear my body energetically and hopefully, to help the body release the turnip and whatever emotional junk is attached.

i believe all our cells have a memory.

my sweet mom arrived yesterday evening, after many hours in airports and planes. she emerged from the busiest air travel day of the year still cheerful, hungry for middle eastern food and full of hugs for me. what a great blessing it is to have her with me this week. after a couple of days at home after surgery, mom is taking me over to a cottage at the oregon coast. a little place right on the beach, so even if it's rainy and cold i can curl up in front of the fireplace and watch the wind and waves from the huge picture windows. being next to the ocean is the most healing place possible for me and my mom loves it as well. being there together will be a wonderful treat for both of us. i feel so loved that my mom arranged everything so perfectly for this week.

the universe is looking out for me in small ways as well. i went to a party on saturday night (quite an accomplishment, just getting out of the house) and won first prize in the raffle, a $40 gift certificate to clinton st. video, which just happens to be the one very close to my apartment! seeing as i am going to be spending some down time this week and watching movies, the prize could not have been more perfect! that's enough to rent 20 movies...i already know i want to get
auntie mame again to watch with my mom. the famous line from that film is: "life is a banquet and most poor suckers are starving to death!"

i feel like there is 6,000 things to do today and i's sure that before i know it, we will be sitting down to my last supper. then hours of no food and no drink.

tomorrow at 10 am, this waiting ends.

Saturday, November 24, 2007

filling time

the waiting is wearing me down. i feel like i am just crawling through the hours. watching endless monty phython clips on youtube to try to keep laughing and fill the time. the temperature has turned cold, so it's even more difficult to get out and get moving.

so i am making soup and doing time. waiting for the surgery, then waiting for the lab results. thankfully, my mom will be arriving tomorrow evening. she can't shorten the wait, but even having her here to hold me in the meantime will make it pass more easily.

tuesday morning i go in to the hospital. they will first do another mammogram and put a needle marker into the center of the tumor, so my surgeon can see exactly where it is. because we are very concerned with margins, it is important to know where the center of that tumor is. not that it is round, from the ultrasound i can see it's a bit pear shaped. perhaps not turnip shaped at all, but really the turnip refers more to the dense white interior and the sheer solid mass of the thing. the geeky biology-nerd in me is fascinated with those details, of course. then the rest of me grosses out and wants to throw up, as soon as it hits me, again.

that this is my body in question.

i hate needles and i'm not a fan of blood. never, ever see scary and/or slasher movies, not even literary ones like l
ord of the rings or beowulf. i don't need more material for nightmares, i have an overactive imagination that works just fine, thanks.

i am dreading a few things.
  • the iv needle going into my small, tricky veins.
  • the needle marker in my breast.
  • giving up my socks and underpants.
  • going under. waking up.
  • seeing my breast for the first time after the surgery.

i am filled with gratitude for even more things, however.
  • the circle of friends and family reading this blog and sending me healing wishes, prayers, magic and sweet thoughts.
  • the donations towards my medical bills, proof that even small amounts add up to make a big difference.
  • my mom being willing and able to come take care of me.
  • a wonderful, warm thanksgiving day with an amazing group of women.
  • prosperous sales of my jewelry at the recent holiday show.
  • joanne, wielding her power for good (see yesterday's post)
  • having insurance, without which i would not be getting treatment.
  • my sweet little dog and her unlimited appetite for cuddling.
  • professional healers in my life: jessamyn, judy and jessica, without massage therapy, acupuncture and reiki, i would be in much worse shape right now.
  • martha, my nurse and her caring attention through this whole process.
  • for living in portland, where i can find excellent health care.
  • dr. naik and the experience she has as a surgeon with these rare tumors.

Friday, November 23, 2007

the gut-wrench, part 3

i couldn't even write here on wednesday or thursday, i was too wiped out emotionally. wednesday started with a phone call from the hospital to let me know i was still not in the system as an 'insured person' and that unless i was bringing a $10,000 deposit with me on tuesday next, they would not be performing the surgery.

i immediately burst into tears. all the held back sobbing from other days broke loose.

i knew it was important for me to be in the system, but i didn't know that they would refuse to do the surgery on an 'uninsured person'. my instincts were right, however. to be pushing and fighting to finish the process. weeks i have been doing this, literally weeks and weeks.

so it's the day before a long holiday weekend and i am trying to finish this, quickly. the whole deal will be made, or broken, right then. every minute counts. i called the hospital again, asking for them to put more pressure on great west. they said they were only able to talk to the same customer service people that i was. getting nowhere fast. more people in customer service not empowered to serve.

the system is thriving, my friends, thriving.

crying, i call joanne, the director of benefits at my former employer. she is calm and loving, she is the mossy rock in this crazy raging river i'm being swept down, just yards from the big drop. i land, safely. joanne has the direct connection to the woman at great west that will re-activate me. joanne was almost out the door for the day, but the fates were on my team this time. she promised to call her contact and make it happen, then to call the hospital and confirm it all to be certain.

i passed the whole ugly mess onto joanne and she took it, gracefully. oh, my god. thank-you. i found a lot to be thankful for this thanksgiving holiday. topping the list is this woman. she had the power to make a huge difference and she said "no problem".

finally i had to walk the dog, get away from the whole thing. then i went to the studio and sorted my affirmation ring inventory. i couldn't create, but i could do mindless tasks.

then the hospital called. i was showing up, back in the system. legitimate once more. i was safe! they were going through the pre-authorizations process for the actual surgery, but that was nothing to worry about.

i couldn't write until now, i was like a dishrag, slapped on the rocks and wrung out hard.

Tuesday, November 20, 2007

insurance company-9, me-0

i could just scream right now. my health insurance policy is somehow lost in limbo-land, even after:

7 phone calls to
5 phone calls to great west
2 phone calls to my former employer
payments sent overnight mail
election forms sent certified mail

i've begged, pleaded, told my sob story, sworn. then waited a few days, then done another round of the same. each and every person(with the exception of joanne at my former employer, she is a gem) has either told me something different or just repeated, in a creepy, monotone, recorded type voice, the same meaningless statement in answer to my specific questions.

how is a person who is barely getting through the day emotionally supposed to fight this fight? how is it that human beings on the other end of the phone line can just run you around and blow you off? insurance doesn't seem set up to help the sick. but i need them, i need them badly. our system is really and truly fucked.

my surgery is in one week! i am freaking out today. feeling positively sick about it. my skin feels thin, like a delicate shell that could crack wide open at the slightest bump. no match for professional
slingers of red tape and recorded voices two time zones away.

maybe, just maybe, after the round of calls today, the loop will be closed and i will be back in the system. back to being a legitimate citizen with the buying power to get the best medical care.

long live the system.

the thing is, i can't just trust it will work out in time. in this game, the insurance company wins if you slack off. you have to advocate, push, pull, stay on top of things, read the fine print, read the big print, call them again. and again. and then again. so i know i will be calling them up until the damn surgery itself to make sure they are on board.

you can trust the universe, but not the one that insurance companies operate within.

Monday, November 19, 2007

thank-you very much

i'm feeling positively saturated with blessings today. the sale went wonderfully on saturday, with so many lovely people coming out to support me, to shop and show how much they care.

i gathered some much needed hugs. it's amazing how healing hugs are to the spirit. studies show also to the body...but it's so easy to forget that.

so, a huge thank-you to nimisha, jenni & her sister & friend, lisa & kiran, antoinette, martha & her mom, kirsten & morgan, dave & miranda...(forgive me if there is anyone else i know came and i forgot to mention here) i am deeply touched you came out to buy jewelry and help pull me away from the water in this financial tug-of-war game.

your weight on the end of that rope makes such a difference!

and thank-you also, so much for your sensitivity, for not asking me about the turnip, for allowing me to just stay in the happy moment of the sale...that alone was such a gift. a day where for long moments, i was so happily occupied, i forgot about the tumor. at the end of the day, my feet were very tired and sore, but my spirit was lighter and refreshed.

despite how scary and vulnerable it often feels to put this turnip blog out into the world, it's the best thing i could have done right now. for blogging has renewed my faith in humanity. the depth of compassion and caring out there and what people are willing to do for strangers, is amazing and humbling. the universe is taking care of me, through you all. your comments on this blog, the thoughts and prayers you send my way, the precious donations to my medical bills, the private emails offering emotional support...all that is proof that the universe is on my side.

thank-you, thank-you, thank-you!

Friday, November 16, 2007

doing what i can

i've been working hard this week, making jewelry for a special holiday show & sale tomorrow, where i'll have a booth and be selling my wares. the sale is saturday, today is friday and there is still much to do. receiving donations towards my medical expenses from caring people out there has put some healthy pressure on me to do all i can to be prosperous this holiday season. you can find more info about the sale here, under events, if you would like to come.

it has been a week of emotional ups and downs. wednesday i felt two seconds away from sobbing all day. i felt intensely lonely and like i have been spending too much time alone in my head. yet, i just could not reach out to anyone here in portland. i didn't want to be alone, but i also didn't feel like talking, like being "on" in any way. even the effort of bathing and dressing seemed overwhelming. forget about cleaning my apartment, it's a total disaster area. a day like that, i just wanted the safety of my sisters, i guess.

on the spiritual level, i think the most challenging thing about this whole
tumor hitting my life like a meteor is that it forces me to accept help. come to terms, again, with the fact that i am not superwoman. allowing others to nurture me is a kind of surrender that is so, so, uncomfortable. yet i know it's also on my personal growth agenda.

why else would it keep coming back?

i've been more of a hermit the past couple of years than ever before. some of that is healthy, setting boundaries so i don't take on more than i can handle. some of it is lazy, just feeling more comfortable staying in the warm bubble of my apartment. some of that has been practical, working full time in restaurants or retail for three years tends to use up all my social energy. i know i have developed some hermit habits that in the current crises, are
not serving me well.

learning to trust people takes longer and longer as i get older, it seems. i want to just snap out of it, or blink my eyes and have it all be over. and i know i should be more patient, more loving and more compassionate of my struggle to come to terms with this tumor, this upcoming surgery. more gentle with my fears of the great unknowns in my future, my bank account, my body.

but i'm just squirming and feeling increasing panic.

p.s. i found a laugh today. read it an weep, here:

Wednesday, November 14, 2007

please, tell me your stories

the outpouring of support from friends and strangers has been so encouraging to me these past few weeks with the turnip growing inside and so many unknowns ahead. i feel so blessed to have inspired you all to reach out, send a message, i've even gotten a few (very precious) donations to help with medical bills. thank-you very much!

everyday, i visualize people all over the globe, sending a little happy thought my way. i try to imagine a circle of light and healing holding me close. thank-you for that healing energy, i want you all to know -i am receiving it.

i am also doing research on pyhllodes tumors and facing many scary realities and possible outcomes. how do i expect the best, yet plan for the worst? i don't want to give the worst possible scenario more weight than it deserves. yet i am not a pollyanna, either.

i am struggling to find that balance.

so i ask for your stories. tell, me if you can, when you faced the most difficult crises of your life -what got you through that time? how did you do it, what sustained you? i need to surround myself with tales of bravery from other vulnerable humans like me. i need role models for surviving with grace. any kind of crises story will do, it doesn't have to be health related at all...

or, if you can't tell your story publicly in the comments section, send me a quote or mantra that has always helped you pull through tough times. send me something inspiring, something uplifting.

or just send me a happy story, something funny. i need to laugh.

Monday, November 12, 2007

breasts, who needs them?

what are breasts for? i've been thinking about this as i contemplate letting go of a portion of mine. biologically, they exist to nurse babies. yet i've never used them for this purpose, nor do i intend to. don't misunderstand, i am a big fan of breastfeeding, i just don't plan to birth any babies in this lifetime.

so my breasts, i guess they are simply decorative. they provide visual balance to my figure. they fill out clothes nicely. they look good in pretty underthings. i can pull off a sexy
halloween costume, should i care to. these are all good things. things that i count on. it's strange to realize that i depend on my breasts to serve this function and i value it.

so that's it. decorative objects.

when i waited tables and tended bar, i used to joke that my breasts were just shelves to catch spills. classically, the white shirt would have a near magnetic attraction to coffee, making stains like leaking nipples down my front. hilarious, right?

ok, so actually they are decorative shelves to catch stains. great.

but i still want them. i do. and it's eating at me, since i concluded yesterday that i will ask
dr naik for the most aggressive margins. take as much tissue as necessary to prevent another reoccurance. head cancer off at the pass. i cannot keep going through this, it's brutal.

as much as i want this tumor out, suddenly my breast, my body, is feeling very much more precious and vulnerable.

thoughts on the body

as i lay in bed trying to fall asleep last night, dark thoughts kept pushing in. i would take deep breaths and push them away, but those thoughts were so persistent. imagining the cutting, the actual surgery and then the aftermath, me looking down at what is left. these tumors are composed of my actual breast tissue, it's not extra tissue that grows, it's my own cells that turn toxic. how bizarre to think of part of my own body turning against itself.

one of the hardest things is the unknowns, of course. since we are currently assuming that this tumor will be another benign one, my mind has jumped to the next thing. trying to predict how extensive the damage will be cosmetically, not knowing how much margin will need to be taken, how much breast will be left. how i will feel and look. it might sound silly and vain to even think about or care how i will look, but i do.

as unenlightened as it is to confess, i am attached to this body.

my scar last time was so subtle i had to point it out to lovers. at first, there was a noticeable loss of mass in that breast, but it seemed to even out over time. no one but me ever notices the slight size difference, perhaps because very few of us humans are perfectly symmetrical specimens, anyway. yet this second removal of tissue may just tip the scale into serious lopsided territory. to take enough of a margin around the tumor to prevent another from forming, that's alot of tissue.

how very surreal to have this rapidly growing thing inside me...

if people told all their secrets about their bodies, everyone would admit to complicated love-hate feelings about different body parts. i can admit now that i've spent much of my life hating nearly everything but my feet and my breasts. for the last ten years i've done alot of personal work on developing a better body image, a more love-love relationship with all of it.

we have our good days and our not so good days, me and my body. i have certainly learned to listen, to trust the wisdom of the body. but i have also often pushed her to work harder and longer than was wise. a friend once said of me that i am, and i quote, "the prettiest little filly with the drive and endurance of a draft horse". that strong constitution will likely be the thing that pulls me through this. and the waves of support rolling in from you all.

yet as i've gotten older, i note that while i have endurance, pushing myself on and on has a price attached. i get injured, repetitive stress shows up in my limbs. i can't find time to maintain my body in good shape, i depend on adrenalin too much, and too often, to make it through the push. i know my system is already depleted going into this battle.

one of the reasons i quit my job to pursue my studio full time was to be able to take better care of myself. then along comes this tumor, as if to say,
um, were you serious about that? well, you better BE serious about it. i'm here to hold you accountable, help you keep that commitment. cause the body over here? she needs more from you. more give and less take, for one. she needs you to keep those dates at the gym, to stop making her silly with sugar and to just relax more.
even toxic cells hold wisdom. the tumor is right, i do need to keep those promises.

Saturday, November 10, 2007

asking for help

i've started re-reading pema chodron's when things fall apart. the title sums up how i feel right now. things are falling apart. the book has been a powerful tool for me at many pain-filled times in my life. pema is a buddhist nun in the shambhala tradition and speaks with a voice grounded in her own imperfect life, a voice of compassion and wisdom that always touches me in just the way I need.

in 2001, in the summer after my last tumor, i went on retreat to gampo abby, in the very northern tip of nova scotia. pema established the abby and is the spiritual leader there. the experience, coming just a few months after my health crisis, was so impactive. i learned to sit and meditate with the mournful cry of ravens in the background. i let a whole bunch of emotional garbage go off the high cliffs into that endless ocean.

so now i am beginning to think of the spiritual part of this whole process. what energy i hold on to in my body, what junk i still need to let go of. just sitting with the fears this tumor brings up to the surface is very uncomfortable, but it is real life.

as i sit, dozens of thoughts pop into my head, i try to just notice them and let them pass. certainly, that is much easier said than done. i beat myself up over the thoughts, then realize that's exactly what i'm not supposed to be doing. sitting and judging. sigh.

inhale, exhale. walking is better right now. it feels active, like i am moving away from something, towards something. only i can define those somethings.

one of the thoughts, the most persistent thought is over and over,
what can i do? what can i do? what can i do? the need to take action, to try to fix the financial mudslide heading my way is so compelling. yesterday i worked in my studio on a series of new earrings for the holiday shows coming up. that felt good. making beautiful things is always a positive action.

several people wrote and suggested i add a donation button to this blog. that is an action that is more challenging. to choose to receive, to allow others to help me. i feel very shy about it, but i did add the button. so i am just swallowing that awkward pride and sitting with how uncomfortable that is: to ask for help.

i realized the full weight of the financial need especially after talking to dr. naik. hearing that
even if the tumor is benign, i likely will need some kind of reconstruction surgery. at the very least, i will be paying for two insurance policies for months while we wait to see how the healing goes.

and as i worked yesterday in my studio, it hit me how much time and energy this tumor is taking. the self-employed don't have paid sick time to tap into. i've just got to work as much as i can and still focus on healing. that alone feels daunting.

Friday, November 9, 2007

the date at last

i have a date. bittersweet but better than romance, it's a date for surgery. what a relief to see the surgeon yesterday, dr. arpana naik. she seems young, but is experienced with these strange tumors. which as it turns out, i think will be much better than an older surgeon who hasn't seen but one in his long career. (like last time)

my brain is still swimming from all the information. i have options to weigh and they may turn out to be heavy ones. there are still significant unknowns. thank goodness for my friend pam's excellent clear head and notes. and hugs. all the virtual hugs are fantastic, yet a live-in-person hug is still the best there is. i didn't even realize how much i needed it until her arms were around me.

i am reassured by the excellent care i am getting. very caring and very thorough. talking over all the possible outcomes and options is without a doubt, overwhelming. i am learning so much about these tumors. martha, my nurse has to be the most patient person ever born. what a gem. i am very blessed to have her support through this.

somehow having the dates for each step of this process on my calender makes things solid in a way that is easier to deal with. like a calming to-do list on paper, vrs the stress of having a jumble of things nagging your mind. now i can lay out my next few weeks, make plans for my mom to come out and go about my business.

the date with surgery is the week right after thanksgiving. november 27, which is perfect. i can still do my holiday show on the 17th and my studio sale on the first friday in december. i really, really need to get back to my business.

today i am awake and out of bed earlier than i have been in two weeks. that is a good sign that the intense feeling of being stuck is passing. either that, or the terror over money is finally getting me to the studio to produce!

Thursday, November 8, 2007

taking margins

a rare tumor means that of all the possible tumors a body could choose to grow, only 1% are these phyllodes tumors. what comes along with that rarity is a lack of studies on them and very often, surgeons (even those who specialize in breast cancer) with precious little experience.

my surgeon in 2001 was good and very kind, but i was only the second phyllodes tumor in his 25 year career! so he didn't know, i can only assume, that even for benign tumors, proper margins have to be taken. to be safe, 2 cm of tissue around the tumor must also be removed.

is this comforting? strangely, it is.

what that piece of information means to me is that this thing is not a sign from the universe that i am on the wrong path with quitting my job and going for my studio full-time. the probability of reoccurance was actually written into my pathology report from the first tumor.

thank goodness for martha, who was able to interpret that report for me so quickly. and thank goodness for portland, for me here in portland, where i can find care experienced in the rare, the unusual, the weird.

today i meet with the surgeon, dr. naik. she has already requested the slides from my old pathology report. i love that, a doctor not taking any chances and going the extra mile to make sure we figure it out and get exactly the right treatment. i am thankful beyond words that a dear friend will come with me to take notes and keep a clear head if mine fogs up.


i spent long minutes on hold and on the phone with insurance companies yesterday, trying to make sure my ducks are lined up just so. it's a tricky business.

and thank goodness also, for you out there reading and pulling for me. the comments and emails this week have been so, so encouraging. getting those messages of solidarity have calmed me like nothing else could.

even though i am calmer than a few days ago, what remains is this numb limbo state which has sucked out all my zip and motivation. i know i should be busting ass in my studio, i should be keeping busy -but i just want to hide in the safe cocoon of my apartment.

I can't see beyond the appointment today, i feel frozen until i know something, anything. a date. a date for surgery would be great. i hope i get that today.

Wednesday, November 7, 2007

bitter balm: health insurance

emotionally, i'm trying to keep myself from spiraling, from thinking of all the things that could go wrong. the part freaking me out is money, for sure. and insurance. before i found the lump, before i quit my day job, i got individual health insurance. i'm a really healthy person, so i chose a high deductible to keep the monthly cost more reasonable (it's still crazy expensive). then i found the lump and decided that if it turned out to be something significant, i was going to need better insurance. so i signed on with COBRA from my former job. thankfully all this happened within the 60 days they give you to decide!

count the small blessings, i remind myself.

now i am paying for two policies. if i drop the individual one, i won't ever get re-accepted, because now i have a pre-existing condition. that is how health coverage works in this goddamn system. i can certainly just keep the super expensive, excellent coverage of the COBRA policy for only as long as it takes to get the tumor out. But then after that?

the fear and doubt creep in and i'm back to the circus in my head. all the possible crazy things that could happen spin around, faster and faster.

what if it's malignant?
what if I need a mastectomy?
what if i get another tumor down the road, with only shitty insurance in place?

i know it's going to be thousands of dollars in medical bills, regardless. and i fear more than anything else in this situation, that it is those bills that will topple my new life. times like this, leaving the states for socialized medicine somewhere sounds pretty great.

it just makes me want to pull my hair and scream fuck! fuck! fuck! on the top of my lungs.

it's situations like these that being grown up is about as fun as having sharp sticks poked in your eye. yet i am trying valiantly to not fall into that bottomless pool of fear. it is an awful place to be and a crippling one from which to make decisions.

and forget getting anything done in my studio. fear is the arch enemy of creativity. i know this lesson, i thought i learned this lesson already. but it's still here, putting itself on my agenda.

damn lesson.

Tuesday, November 6, 2007

do you?

at last, i have an appointment to meet with the surgeon. it's only two days away. another two days of waiting, of motivation-crushing limbo. ARGH! thankfully, the breast nurse called me yesterday afternoon to answer questions and really helped sooth my distress. have you local portlanders heard the OHSU breast center's commercials? with martha? well, that's the nurse who called me. the martha from the commercials is a real person, a real, kind caring person.

listen to how much magic is in this internet. a fan of my other blog,
found object, is friends with martha. she emailed martha the link to this blog and just that quick, martha was calling me to offer support, information and a sooner time slot to see the surgeon. yesterday morning, i was going to have to wait a whole week to see the surgeon and until wednesday to talk to martha.(thanks, jenni!)

and i am going to be seeing a woman surgeon, one who has experience with this particular type of rare tumor. that is also reassuring.

today i am just trying to focus on the positives. positives like i found this one much earlier than the last time. so it's smaller, which hopefully is better. certainly it means i lose less of my breast. fingers crossed.

i found this one because do my self breast exams every month now. prior to the tumor in 2001, i rarely did self breast exams. sure, i hung the exam guide in my shower and fooled myself into thinking that i was, in fact paying attention.

but i wasn't.

truth is, doing the exams scared me, made me feel a bit squeamish to be poking around.

despite the guides, i didn't really know what i was doing or what i was supposed to be feeling. my last surgeon actually taught me how to do the exams and explained what i was feeling in there. it's like learning the geography of your body. and it's a shifting landscape throughout your cycle. i finally learned that i should always do them the same time of the month, about 5 days after my period starts.

when you know the lay of the land, it's easy to feel something new.

breast exams. do

Monday, November 5, 2007

freaking out

on friday i woke with upset tummy (nerves) and fretted the morning away before my appointment at OHSU radiology for my mammogram and ultrasound. oh, i tried to shake it off, i went to the studio, but that was useless. all i could manage was making to-do lists.

shit. breast tumor or not, i have a holiday show in two weeks to prepare for!

the staff at OHSU was wonderful, i have to say. warm and calming. the woman taking the mammogram was so gentle and tuned into the moment, it was very reassuring. she talked me through every step.

while i waited for the doctor to review my films and to be called for the ultrasound, i read my bookclub pick for the month.
down the nile: alone in a fisherman's skiff, by rosemary mahoney. she's an engaging enough storyteller to let me mentally escape the reality of my situation for a while. what a comfort a good book can be.

unlike six years ago, i was prepared for what i might see on the ultrasound and i came informed about phyllodes tumors. still, it was shocking, seeing the tumor on the screen. so dark and solid, shaped like an apricot. and even though i know that these tumors are made from my own breast tissue, gone bad - it still looked and felt alien.
an invader in my soft places.

the radiologist was a wonderful woman, very positive and straightforward. in her opinion, the tumor presents exactly like a phyllodes tumor. that's supposed to be the good news. and i guess,
yes, it is better news than a mass that presents like cancer, is obviously all over the place, growing into every corner of the breast. this phyllodes presenting tumor is compact, solid unto itself and can be plucked out of the body by a good surgeon. until today, i was still holding on to a slim chance that my instincts were wrong and it was just a cyst, something that would go away on its own.

when i drove away from the hospital, it hit me. i hadn't cried yet. suddenly it was a huge wave of grief. driving over the ross island bridge, i called my sister in chicago, she let me cry. i had felt so lonely at the appointment and deep, irrational self-pity took hold. you know, 90% of the time, i'm so busy and happy in my life, i don't miss having a partner. but when shitty things happen, i feel the space there beside me grow. i feel how empty that space is. so i cried about needing my mother to come out to be with me, at age 41, during the surgery.

my married sister brought me back to reality, she said if she was 60 and mom was 80 and she needed surgery, she would still want mom to be there. you
never stop needing your mom, no matter how old you are and how supportive your partner may be.

vital stats on the turnip: it's about 2 inches by 1 inch right now, but they grow rapidly.

so today i call the breast nurse and she will get me an appointment with a surgeon. i'm praying things fall into place quickly so i can plan my life. find my mom a flight, decide how much work i can take on in december, the biggest gift sales month of the year.

Friday, November 2, 2007

and this, my friend, is now

the nights are turning colder.glowing yellow leaves fall slowly as i walk the dog. before bed, a simple act, rubbing lotion into my dry skin. and there it is, a lump. a large lump, solid and confident in my right breast.

why now? why when i have finally taken the big leap of faith and quit my day job to pursue my own business, my art, my passion - does this monkey wrench jump on board? i feel the weight acutely of my business loan, my insurance payment, my bills. the worry distracts me from my studio.

it's a surprise mid-term exam and i don't feel ready.i immediately turn towards finding default, to ask questions,
get to the bottom of things.

what's the lesson?
what didn't i get last time?
what was this lump sent to tell me?

on the phone, my best friend brings me back to the now. sometimes shit just happens, he says. and you're going to be ok. exhale. thanks. of course you're right, i know that.

but waiting for my radiology appointment, i can barely drag myself out of bed. i don't want to face it, the reality feels too harsh and so lonely. the what if's are as loud as a flock of crows in a cornfield.

my head feels like a place i can't stand to be alone.

Thursday, November 1, 2007

that was then

in may of 2001, i was teaching high school and looking forward to chaperoning the prom. in the t.j.maxx dressing room with piles of discounted evening gowns, giggling with a friend after a few glasses of wine- i smoothed the fabric of beautiful dress over my breasts and there it was. like it appeared out of thin air. time stopped for a few moments, long enough for me to think no, no, not now, not breast cancer, not this. how could something so significant be growing in my body without me knowing?

that story ends happily, although the path i traveled was very hard and rocky at the time. i was 34, a teacher, a single homeowner with a dog and very much settled into my small town midwest life. i didn't know how ripe i was for shaking.

the following friday in the late afternoon, i had my first mammogram and ultrasound. afterwards, the arrogant radiologist sat on the edge of bed ( i remember clearly how irritating it was that i could feel his hip against mine) and announced that yes, it was a tumor, it was large enough that i would be having surgery for certain and it may indeed be cancer. i was sent home with no answers, only building questions and galloping fear.

i was blessed with a kind and skilled surgeon. my biggest fear that first meeting was -would i be horribly scarred and how soon could be get this done. i was going to nyc, leading a group of 10 high school art students in only two weeks time. i couldn't cancel the trip. my doctor wanted that tumor out just as quickly as possible, within days, i was grimacing through the insertion of my first iv needle.

the tumor came out without protest, my surgeon was skilled, my scar as small as one could hope for when a thing the size of a baseball is removed from your breast. a soft line following the curve of my aureola like a faint frown is all that remains today.

i was lucky, the tumor was benign. a rare, strange tumor called phyllodes. they grow quickly but keep to themselves and don't spread to other parts of the body, even when they are malignant. he got it all. when i asked what it looked like, my surgeon said it was solid and white like a turnip inside.

my chances of getting another were small. i counted my blessings and looked at my life with new eyes.

that was may. in the fall, a few days before my birthday, the world turned upside down on 9/11. that was it. i knew without a doubt that if a person could get cancer or be bombed any fucking day, i sure better love my life, every bit of it.

i wrote my exit plan from my safe little life. within two years, i had sold my house, quit the teaching job and moved across the country launch my business in portland, oregon. i fell in love with the moss here. i felt nurtured by the organic food choices, the coffee shops and bookstores, the diversity.

the tumor held a lesson and i took it to heart. i heard it as a wake-up call. i grew up, got serious about what matters and found a good therapist. i healed my relationship with my mother and came out. those are the big highlights, there are a myriad of other riches i owe to that tumor.

basically, i woke up. i found the now.