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...that i should be more true in my blog. that i should include day-to-day blunders, events. that i shouldn't censor. so i thought you all might enjoy this story from last week.
i made an appointment at nordstrom to go get a breast prosthethis. kaiser suggests getting one at least one month after your surgery so you have healed up. so one month and 2 days after surgery, i went to nordstrom to meet with adriana - the certified breast prosthethis and bra-fitter.
it. was. horrible.
i sat waiting for about 25 minutes while 2 young large-breasted teenagers bought bras with their moms. one of them purchased 3 bras for $150 and complained to her mom there was no way she would ever wear a beige-colored bra (acting like it was the grossest thing she could ever imagine), only under a sweatshirt or something. it was depressing to wait and watch everyone with two normal breasts buy all the bras they could get their hands on. i'd felt depressed before. but there was something about being in a nordstrom lingerie department that sent me over the edge.
so then adriana could finally fit me. she brought me in. was very professional. helped me find the perfect bras. showed me the basics of breast prosthethes. i sort of shivered when i looked at it - all squishy and fake. and then she told me that (here we go again) they don't normally stock the smallest size that i would need. so i would have to wait 5 days for her to get it in. and here i was expecting to be fitted and sent home with a brand new breast that would make me feel normal again. no way, honey. you're going home the way you came in. one boob only.
so that was depressing.
and then a few days later, my boyfriend came to the rescue. i woke up still cranky. i tried to get dressed for our hike. but i just started to stomp around all bummed that i wasn't going to look remotely cute in anything. that i would continue to have to wear an open button-down shirt to hide my one-sidedness. cranky cranky cranky. and then eric (like a true prince) said...why don't you try one of your own bras?
hm. hadn't thought of that. everyone had been talking about all the resources available to me - wigs, prosthethes, support groups, whathaveyou...that i'd forgotten that i might have the resources myself.
and with that...problem solved. because i am so small-chested i can get away with a nice push-up bra with only one side filled. and no one would know the difference. it's miraculous. and now i can walk around feeling normal again. in all the old shirts i used to wear before the mastectomy. no layered look. just one t-shirt.
moral of the story?
simple solutions are readily available. as long as someone else is looking for them.
so i'm hearing that people start to get a little crazy when i don't write for a while...
it's hard because compared to the diagnosis, the surgery, and the oncology appointments...it feels like there's nothing going on. i'm sitting and waiting for the results of the test. (holding my breath for a LOW score.)
what have i been doing?
well, kitty and i hang out ALL the time.
i've been emailing like crazy with all of my friends who are pregnant and due either yesterday or in the next few months.
and i've been researching the oncotype dx test and my options after that, providing my score is low.
my cousin laurie's husband, steve (mentioned last post) is a big wig oncology guy. :) so i've been talking to him about all the possible options. (it's been such a big help...i can't even tell you. to have someone in the family going to bat for me? compared to the oncologist who didn't even want to answer my simple questions? it's amazing.) steve used a connection he has to one of the top breast oncologists in the world - a dr. at dana farber cancer institute.
(which do you like bettah: dana fahbah oah kaisah?)
in talking with steve, it seems like if i get a low score on the oncotype dx test, i have a few different options: 1) stay with kaiser in denver and take tamoxifen, 2) get a consult with the dr. at dana farber, 3) potentially get involved in a clinical trial that is related to the dr. at dana farber.
the clinical trial idea is actually, at this point, the most intriguing to me. it may be because i haven't been able to use my social work skills in the last few months...and that i'm jonesing for a way to make a difference. it also may be that i've just been reading a lot about how there is so little research on younger women with breast cancer. if i could take this crappy experience to potentially help other people in the future...that might be a really good thing.
BUT.
i'm NOT getting my hopes up. there is still the full possibility that i will have to do chemo.
but it's all about waiting right now. waiting another week or two for the test results to come back.
until then i will keep hanging out with kitty, keep emailing pregnant ladies, and pick up my friend jessica at the denver international airport on friday. not too bad, right?
xo
so...i did not start chemo on monday.
it turns out that i just didn't feel comfortable enough with the oncologist's advice. she was all about getting rid of the cancer. obviously. and had less focus on my actually life. if that makes sense.
so instead, i asked for the Oncotype Dx test. the test results come back in 2-3 weeks and will tell me whether i'm in the low, medium, or high risk group. if i am in the low risk group it means that chemo will basically have no effect beyond the 5 years of tamoxifen.
my current oncologist refuses to treat me any other way besides chemo - all because of my age. by asking for the test, her nurse said, i was asking for a second opinion. so. now i'm scheduled to have a second opinion with another kaiser oncologist who is really good friends with my gynecologist. and my gynecologist is one of the nicest people in the world. so hopefully i'll connect better with her friend than my current oncologist. that is scheduled for the 11th of september.
it's also possible that i will get another opinion from a dr. outside of kaiser.
so. that's that.
i can't remember being on such a roller coaster as i've been on in the last 7 weeks. but hopefully the information from the test will be helpful in making a very informed decision. (AND i just found out that my cousin's husband is a phd in cancer research at one of the leading oncology drug companies. who knew?!)
patrick is back from the artic cirle and spent the past weekend here with us. he asked me to post this to everyone. it's been really important for him that all of you have been such serious help for me:
dear family and friends and of course meggy,
i had the pleasure of spending the weekend with meg and mom and dad after way too much time away. it was so great to be able to see her and talk to her and get a vetter understanding of all that has happened while i was away swatting mosquitos in alaska. i was and am super impressed with how she is doing and just seems to be taking all of this crazy stuff with style, grace, and composure. she has a great sense of humor about it all and was able to laugh about many of the harsh realities of cancer. i feel so lucky to have such an awesome sister. and thank you all for providing so much support, insight and love for such a hard disease.
all these decisions are messing with me.
but...it seems that i will not start chemo tomorrow morning.
i spoke with sandra, the nurse from the non-profit, on saturday.
she spoke with 3 of the most respected medical oncologists in colorado on my behalf. all of them agreed that it would be helpful for me to get an Oncotype Dx test...a test on my tumor that will give the oncologist information on how helpful chemo will be for me beyond taking the tamoxifen alone. (review: tamoxifen is the drug i will take for 5 years to starve any cancer cells of estrogen.)
the 3 oncologists said that if i score in the low-risk category, they would consider no chemo for me.
the part of all of this that is a little scary is that my current oncologist does not trust this test yet. supposedly it has only been available to the public for 3 years. and she doesn't trust it for me because it wasn't originally tested on 32 year olds. she said that even if i did get a low score, she would want to give me chemo anyway. for her, my age is the kicker. i have too many years to live to risk going without chemo.
but. the other oncologists believe it would be a good tool for me to use to make an informed decision about accepting or not accepting chemo.
i'm stressed because i don't really like the idea of more waiting. the test results take a few weeks to come back. but. i guess it's better to have as much possible information as possible.
which do you like bettah: waiting or possibly not having to lose hair and my ability to have children?
*sigh*
i'll keep you posted.
i've been driving myself crazy doing research and trying to make plans.
i've been talking to people of differing roles in the medical system to see about the possibility of a second opinion - just in case. i've talked with nurses, social workers, friends, neighbors to see what they think and what connections they have.
i've had to figure out how to get a wig - if i choose. patrick suggests getting a mullet wig. my friend phil suggests a metallic pink one. there are ones made of my own hair. used ones from the american cancer society. who knew there were SO many wig stores in denver and online?
i've had to figure out new bras and prosthethis - if i choose. so i can actually start to feel a little more like myself again.
and now i need to work on insurance issues. how much they cover, when, what, etc.
it's amazing how much i've been forced to learn and understand in the last 6 weeks.
dr. says chemo.
basically she said there's not a chance in hell she'd not do it. for me. regardless of the small tumor. regardless of the clear lymph node. regardless of the good margins or the ER/PR positive-ness of the tumor. it's all about my age. 32. being young gives me so many years for the cancer to possibly come back somewhere else. if i were 50 or 75 it would be a different story. but i'm 32. and that scares everyone.
so.
i'm still processing. but i wanted to be able to let people know as soon as i could wipe the tears from my eyes.
it'd be once every 3 weeks for 12 weeks. i could start as early as next monday. and be done before halloween.
i'm freaking out. but. eric and i have talked a lot in the last 5 hours. and...it'll be a few months of a really shitty time. and then by all accounts, i'll be "cured." basically it's a big huge game of "which do you like better?"
way back in high school, my best friend lia salza was on the T in boston. she heard these kids playing this game basically rating all the cities around boston...which is now called, "which do you like better?" it went like this:
kid 1 (in boston accent): which do you like bettah malden oah melrose?
kid 2 (in boston accent): malden.
kid 1: okay, which do you like bettah malden oah billerica?
kid 2: billerica
kid 1: alright, which do you like bettah billerica oah dorchester?
and on and on and on using different cities and towns around the boston area.
since then it's evolved beyond just cities to include old local favorites like paperama, lechmere, white hen pantry, etc.
the possibilities are really endless.
lately, it's evolved to include...which do you like better...commuting in really bad traffic or breast cancer?
today, it seems to have evolved to...which do you like better...losing your hair or dying of cancer?
maybe this is game that's only fun for people who've lived in the boston area or for people who have a sick sense of humor. but. it's getting me through the day. so that's something.
- people take me out to breakfast, lunch, and dinner
- people send beautiful flowers
- people send the most amazing packages (knitting patterns, books, cookies, dvds,
US Weeklys, coffee, swedish fish, quilts)
- people send the most thoughtful, eloquently written cards
- people visit from 6 to 100 to 800 to 1000 miles away
- people leave voicemail messages all the time - with words of love, encouragement,
or just details of their day
- friends of eric's call just to check on me - from boulder, from germany,
from carolina
- people i've never met check the blog every day- my dad mows our lawn with a 30 year old lawnmower, fixes the bath tub drain,
and washes dishes
- my mom walks our dog, vacuums, and buys me pocketed shirts to disguise my
current one-sidedness
- my brother calls from the arctic circle
- my extended family feels closer and less "extended"
- people come out of the woodwork...from 2nd grade, from 6th grade, from high
school, from college, from across the street
- nurses give me their home numbers
i can't really find the words to say how much it all means to me.
i mean...it's pretty remarkable. and wonderful. and mind blowing.
and, at the same time, shouldn't we be doing things like this for each other every day just because?
xo
my friend caroline left this morning at 6:00...supershuttle took an hour and a half to get the airport - normally just over a half hour drive. but that was nothing compared to caroline's epic 14+ hour drive from missoula, mt to denver. talk about dedication.
caroline and i grew up together. we had matching bikes. we played frogger. we tried to suntan our pale bodies in her front yard - flipping over every 15 minutes. we had family vacations together catching frogs. she introduced me to neil young and 'the wall.' we spent hours in the used record store. and 3 years ago, i was her maid of honor at her wedding in MT.
and tuesday she drove what felt like a billion hours to help take care of me...i think her travel time was longer than the actual time she was in denver!
man, having breast cancer might just be worth it! :P
alright ladies...it's been one month since i found out that i have breast cancer. have you done a self breast exam in the last 30 days?
just in case you need a refresher...here are very clear instructions from the american cancer society:
http://www.cancer.org/docroot/cri/content/cri_2_6x_how_to_perform_a_breast_self_exam_5.asp
please do it.
my friend riki just left to go back to san diego. and i'm s-a-d.
it was so so nice to have her here. to have a partner in crime to eat pounds of swedish fish with me. to eat peanut butter filled pretzels with me. to watch movies and bad tv with me. to have someone drive me around. especially to have someone drive me to dinner - courtesy of her mom. and to have an old old friend look at my scar and tell me there was something strangely beautiful about it. xoxo
eric will be back tomorrow from the singer family reunion in nj.
and then caroline will be here tuesday from montana...there's so little time to be lonely! things are looking good.
but until then, i'm feeling a little depressed about riki leaving.
i guess i should snuggle up with kitty and distract myself with harry potter.
hmm.
i wonder if i should rename my blog.
i wanted the cancer out of my boob. but...instead my boob got out of my body.
i just came back from my post-op appointment with dr. haun. and all the good news was confirmed.
healing very well.
no malignant cells in the lymph node.
well-defined margins.
officially classified as grade 1.
estrogen-progesterone receptor positive - which, remember, is a good positive.
with all of this good news definite, dr. haun cautiously said that she doesn't think i'll need radiation. she cautiously said it looked like i might not even need chemo...BUT that i should wait for my appointment with dr. azar (oncologist) for final determination. (oncology appointment is set for monday august 13th.)
she said i can even use deodorant and shave now! thank god! i was beginning to feel like a mountain man.
google map "noorvik, alaska." follow the river east until it stops. that is where my brother has been since all of this drama about breast cancer. he's been canoeing down that river, paralleling the artic circle, leading a group of NOLS students with one other instructor.
luckily i was able to contact him before he was out of range and i could tell him exactly what was going on and when. so prior to leaving on the trip, he asked for permission to use the NOLS satellite phone to call me a few times during his trip to make sure i was okay. we also have the luxury to text him on this phone, 145 characters worth.
he has called me three times since he left. the conversations are as clear as if he's in the next room. last night he called me and told me it was really good to talk to me and hear i'm okay. he had had a major scare that day. he and the students were canoeing in the middle of NOWHERE when a helicopter appeared. the helicopter saw them, hovered for a bit, then landed very close to where they were. patrick assumed the helicopter was there to bring in another instructor to relieve him, to bring him to the nearest airport because something very bad had happened to me.
i can't imagine that panic.
it took a few minutes for patrick to realize the helicopter was not for him. but he couldn't shake that bad feeling until we talked last night.
this whole experience has been quite ridiculous and surreal - for me, for family, for friends. but i can't imagine what it must be like for patrick. in the middle of nowhere. only allowed to use a satellite phone 4 times in 6 weeks to check on his sister who just found out she has breast cancer...
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