so...on tuesday i went to a nutrition class through the university of colorado. and i am pumped.
for the last 2-3 months i've been feeling like this life is not my own. my body is not my own. doctors tell me what i need to do. chop something off. put chemicals in. and each of those solutions have their effects on my body...good but also bad. permanent scars. temporary side effects.
so when my neighbor told me he'd found a free nutrition class for breast cancer patients? i literally can't even tell you. i felt like i'd won the lottery. i'm not kidding.
so i went to the class. there were about 8-10 other people there. the woman leading the class was a nutritionist who specializes in cancer patients. and she talked for two hours straight. it was a little overwhelming and i'm still trying to go over all the information. but, in the end,it was completely helpful and inspiring. and what was really nice was that she had all this research specific to cancer patients that she used to back up her suggestions.
#1. exercise, exercise, exercise. there have been all these studies that show that exercise is the absolute best thing you can do for your body. to help prevent cancer. i know everyone knows it's good for you...but the studies she cited were amazing. exercising only 30 minutes a day decreases rates of heart disease, osteoporosis, strokes, and cancer by 20-50%. just walking 3-5 hours a week decreased recurrence rates by HALF.
#2. drink green tea. drinking 3 cups a day lowered recurrence rates of stage 1 and 2 cancer by 30-40%.
#3. talk with your dr. about your levels of vitamin d and calcium. the nutritionist said that vitamin d is the new folic acid. in the 70's people were singing the praises of folic acid. and now they are finding that vitamin d has some similar very strong helpful properties.
#4. be careful with alcohol. in people who have this bad breast cancer gene, one drink per day increased their risk of developing breast cancer by 10%. two drinks - 20%. etc. so...be careful.
#5. drink and eat organic dairy products. so important. and so important for kids. there are so many hormones in non-organic dairy products...and it's doing a lot to mess with kids' bodies early.
there was a lot of other information in the class. most of it was very specfic to prevention of recurrence of breast cancer. but the moral of the story is...exercise, eat a lot of fruits and vegetables, keep a healthy body weight. like my friend phil has said, people shouldn't all freak out to follow every single one of these suggestions exactly. sometimes cancer just happens. but what i felt really good about in this class was that i finally felt like i had some control. i felt like i could do something to make a big difference in my body. and it wasn't just making the decision to get chemo intravenously. there were things i could do that felt more comfortable and known to me.
so. wrapped in my 'hello kitty' robe, i can feel a little more in control. it's nice.
well...this weekend has been a bit of a rollercoaster.
yesterday i felt so run down. it's really hard to describe...but i felt like my muscles had been turned into tubes...tubes that mushed and hurt and ached all over. and the aching didn't subside with massages or stretching or anything. it was just a weird pain in my sides and where a shirt collar would be and around my sinuses.
today i feel better. today the pain isn't as pronounced. but i'm pretty foggy. and i had a nice headache earlier.
all of this is just so unsettling. i try to anticipate how i'm going to feel. and a lot of the feelings in my body are new...and odd...and so it just amplifies an alien-like feeling. which is totally unsettling and hard.
i've been eating and drinking and walking and resting.
i also spent a good part of the day talking to my neighbor who was diagnosed with myeloma just over a year ago. he gave me lots of suggestions...mostly things he wished he'd known as he was entering treatment. he said the things that have been most important to him have been nutrition and physical therapy - and he gave me all these different resources to pursue. which should be good.
and as soon as my new fancy pants ipod finishes syncing i will try, for the first time, some meditation specifically for cancer patients and chemo - recommended by a good friend of my brother's.
so...i'm still trying to think positively. still trying to eat and drink well. still trying to help my body through this.
thank you for all your sweet words. they really are so helpful. xo
last night was a little hard. i was instructed to take my meds every 6-8 hours. turns out every 6 hours is better than waiting every 7 hours. at the 7th hour...i was out. not the biggest bout of nausea. but it was enough to make me not want to eat. or to really do anything actually. so i lay around for about an hour, trying to take a few bites of saltines, trying to drink some water. and then once i recovered, i slept like a baby for about 7 hours.
and this morning i took all of my meds. drank water. ate oatmeal. and i'm doing okay.
and the thing that really sent me over the edge into a better recovery state of mind? a beautiful package in the mail from lia. i'm not one to rattle off all the contents of the packages i've received. but there are some that just...some that just warrant it.
lia salza, now lia salza goldstein, and i have been friends since 1981. we went through glen urquhart together. we went onto high school together. i spent hours and days and weeks at her house. i remember reading all the "value of kindness" books at her house. her mother took a bunch of us to experience the AIDS quilt for the first time. we took the train to each other's houses all the time. lia, as mentioned in previous postings, was the mastermind behind the timeless game, 'which do you like bettah?' we talked on the phone nonstop. and one thing we did for each other...i don't even know how it started...we made homemade advent calendars for each other. all very time consuming. all extremely hilarious in our own private way. not just celebrating the advent of christmas...but any month we were inspired.
and what comes in the mail today? a massive package from DC. from lia. a homemade advent calendar. with a door for every week of my chemo. and inside the first door? a tealight candle with a saying taped around the edge. 'if grief or anger arises, let there be grief or anger. it is the universe offering all things to awaken and open our heart.' the project of making the calendar must've taken forever. (see above picture.) and lia's going to give birth any second now.
i just had to make a big show of it. it's awesome.
it means so much to me to have everyone thinking of me. to hear everyone's phone messages. to read everyone's cards and emails. the packages of knitting projects. the cookies. the paintings. the books. the packages with soaps and candy and magazines. the gelato. the visits. it's, as i've said before, pretty overwhelming. and amazing. i feel so much love surrounding me. just like a massive forcefield of hugs.
the process took about 3 hours. the nurse seemed like it was her second time doing all of this. the nurse told me i should make a point to drink more liquids because a good vein was hard to find. then she pumped me with saline. then with an anti-nausea drug. then with adriamycin - also known as the red devil because it is red. then with cyclo something.
i'm pretty foggy right now. the nurse said it's likely the effects of the anti-nausea. i was trying to tell patrick a story...and i just stopped, totally unsure where i was going with it. that actually is normal for me. but it was even worse. so for those of you who aren't here...you're probably lucky.
so now patrick and i are home. i'm armed with a beautiful aluminum water bottle. i'm also armed with three types of anti-nausea drugs. one of which cost $100 PER PILL - and i got 2 for 50%. lucky duck.
and i think i will take a little nap now. today has been a rather big day. thank you all for your emails, comments, and text messages of love. xo
so in preparation for tomorrow morning, i did some research into environmental links to breast cancer. i dread the coming of tomorrow. so i hope some of these ideas will stick with some of you...and hopefully you won't have to go through what i'm about to go through.
okay. here's the deal. i am going to make a cheat sheet for all of you. it will be a cheat sheet to work on avoiding some of the environmental toxins that are showing to cause/help breast cancer along. do as much as you can.
1. don't smoke 2. eat organically grown foods as much as financially possible 3. do not microwave food in plastic containers 4. if you drink water from plastic bottles, do not drink water from warm bottles 5. avoid beauty products that contain parabens or phthalates - esp. hair products 6. avoid deodorant with aluminum 7. avoid cleaning products with alkylphenols - like octyphenol, nonylphenol (and air out your house as often as possible, open windows and doors) 8. try killing weeds with boiling water, vinegar, or alcohol 9. especially in adolescence, avoid use of fragrances 10. especially for kids, try to buy organic apple juice
because organic foods are so much more expensive...i wanted to also give you a list of fruits and vegetables that tend to have the highest amounts of pesticides in them when grown nonorganically. it's important, then, to buy these items organic if possible:
so. it can feel overwhelming to really think about all of this, to really learn about it. but i hope that these lists make it a little easier. maybe just make a goal of making 3 little changes to your lives based on this information. in honor of me?
this morning i had to go to a pre-chemo class at kaiser.
not only was it relatively unhelpful (because the nurse had told me the majority of the stuff already) but it was also completely depressing. i walked into the class a little late and i felt like i was walking into a movie screening at a retirement home. i mean...not that i would hope that everyone would be young...but it just made me feel so out of place.
eric and the band were up in the mountains this weekend. so kitty and i drove up yesterday to spend the day with them. we picked up eric and drove to dillon reservoir...it wasn't the ocean...but it's so big and it has sailboats on it and waves...that, if i closed my eyes half way so i couldn't see the other side, i could almost trick myself into believing it was the ocean...
so we hung out, had breakfast, walked around the lake. and then eric decided it was time kitty learned how to swim. she loves the water. she jumps in and out of the creeks and canals around denver. she laps up the water - all excited. but she never gets deeper than somewhere between her "knee" and her "shoulder." so...eric brought her out to the dock - about 15 feet from shore - and threw her in. it was a little traumatic for me, kitty's mom. but after she popped back to the top, she came swimming directly for me. it was very, very, very cute. although...of course, because everything she does is very cute.
and then, for good measure, eric coaxed her onto the dock again and threw her in a second time. again, with the cuteness, swimming toward me and the shore. and although she didn't run back to greet eric on the dock for a third go around...she still loves him.
today i got injected with more radioactive dye, waited in a f-f-freezing cold waiting room, and then lay around while a massive machine took pictures of my heart. awesome. and i already got the results back...everything (physically) in my heart is a-okay.
and then i went up to the oncology department to check in with the oncology social worker. the best thing is that because he is based in oncology and not the mental health services department...he's free! he was very good to talk to. and he has a daughter named meghan. so there's that. and it's nice to be on the receiving end of social work. maybe everyone should be talking to a social worker and doing self breast exams constantly.
so. monday morning i go back to the oncology department to watch a video on what to expect during chemo. then all day long my brother drives down here from montana. :)
then tuesday. tuesday's big. 8am.
the social worker told me a bit more about what i could expect...based on typical people. he said the first 3-5 days after chemo you are amped up on steroids. the next 5 days you plummet...he kept making an unsettling hand gesture like a very steep roller coaster fall. you fall into ridiculously extreme fatigue. he said it's not like your typical hard-day-at-the-office fatigue. it's often like you just can't get out of bed fatigue. and then you start to come out of that...and then you start to feel much much better. your best days are your days right before your next injection.
so...there's that to look forward to, i guess. i'm psyched.
just like before surgery, there is so much to do before chemo!
they highly recommend getting your teeth cleaned before chemo because once you start chemo you can't go to the dentist - for risk of infection. so. i made an appointment and went in yesterday. it was great...just what i want to be doing is hearing scraping, scratching, pulling of the dentist's office. but...it ended up being an awesome experience.
my dentist came in. asked me about my medical issues. i told him the c-word. he said...oh...uh...my cousin has cancer. not breast cancer. but bladder cancer. (end of conversation.)
but then the dental hygenist came in. she said, hi, i've had chemo, too. she told me had ONE YEAR of radiation and A YEAR AND A HALF of chemo. insane. i asked her for tips for getting through it...even though hers was so much more intense. she had the coolest ideas. she suggested going to get paint and huge pieces of paper. even though she never did before, she painted every single day. painted out her emotions so they wouldn't become toxic inside of her. she also created a cement box where she would keep glass bottles. on days that she got really angry, she would break the bottles inside the box, then paint about it, then laugh about it. she also suggested writing down bad thoughts, sad thoughts and putting them inside a jar and sticking the jar in the freezer - so you knew where they were, but so they were sealed up and away from you.
she had the best energy. she was so sweet. and her ideas were so cool. i'm really glad i went to the dentist. but how come hygenists are ALWAYS cooler than the dentist themselves? ________________________________________________
and so today to get prepared i am going to have a heart test. that takes an hour. my new oncologist said that she's more neurotic than the old one...so she'd just like to make sure my heart is working perfectly before pumping nasty chemicals into it. and then i get to meet with the oncology social worker - to check in about how i'm handling all of this.
it's true that a score of 17 still puts me in the low-risk category.
the problem is that i'm 32. (here we go again...it's as if being 32 and having small boobs is the worst thing in the world.)
the test was developed using people who typically have breast cancer. less than 10% of the people in the original research were under 40. therefore, people/oncologists are very scared about putting all their eggs into the oncotype dx basket for me. so two of the three oncologists who consulted about my case said they would feel comfortable not giving me chemo if my score was significantly less than 10. 17 is definitely not significantly less than 10.
the good news...as if there feels like there can be good news...is that i am still technically in the low-risk group. so, as my cousin steve says, that meas 17 is a pretty good number in terms of my overall outlook whichever treatment i elect.
but it's still completely traumatizing. to lose my hair. to be nauseous. to have low energy. to feel unsure about going out in public. to feel neurotic about taking my temperature - always needing it to be less than 100. to worry about chemo's effect on my heart, my lungs, my ovaries.
talk about being 32. this is too much for a 32 year old to handle.
come on, ladies, time for the monthly reminder to do your self breast exams. it's been two months since i received my diagnosis. by now you should have all done at least two exams. (i realize many of you have already done about 60.)
important things to remember: 1) best time to do them is a few days after your period 2) important to look in the mirror for changes 3) important to choose a technique that works for you - circular, lines, wedges 4) you're looking for changes. if you're not sure, make an appointment with your dr. 5) DO THEM EVERY MONTH. it's not prevention. but it could potentially save your life if you catch it early. 6) i'm serious about this.
here's a new link for some variety: http://www.acog.org/publications/patient_education/bp145.cfm
so this test supposedly takes 10-14 business days. as of today there have been 10 business days of waiting. the first 9 were okay. now i'm just getting annoyed.
This being human is a guest house. Every morning a new arrival.
A joy, a depression, a meanness, some momentary awareness comes As an unexpected visitor.
Welcome and entertain them all! Even if they're a crowd of sorrows, who violently sweep your house empty of its furniture, still treat each guest honorably. He may be clearing you out for some new delight.
The dark thought, the shame, the malice, meet them at the door laughing, and invite them in.
Be grateful for whoever comes, because each has been sent as a guide from beyond.
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