Pinktober – Enough with the Pinkwashing

It’s that time of year again. Thought I’d throw a little information your way to help you navigate all of the pink washing that’s a’comin’

1 in 8 women will get breast cancer. 30% of those initially diagnosed with early stage disease will go on to become metastatic (aka Stage IV). 4% of newly diagnosed breast cancer patients are Stage IV at initial diagnosis. 113 people die from Stage IV metastatic breast cancer (MBC) each day in the US. There is no cure for Stage IV and only 2-5% of research funding goes to MBC.

What we need is to find a cure for this disease. We don’t need pink mugs, pink scarves and/or pink ribbon keychains.

While some women live for years with Stage IV disease, others do not. Their collective voices aren’t always able to be strong as they’re enduring treatment while simultaneously trying to live life.

It’s up to US to make their voices heard. To demand money be directed toward finding a cure and supporting actual individuals living with metastatic disease.

This year I’ve lost 2 friends to MBC, and their deaths should mean something. I have another 5 friends who are living with MBC and I fear 2 of them will die before long. This is scary and so sad.

Please do me (and every other person you know who’s been diagnosed with breast cancer) a favor, and don’t get sucked into the pink washing. Please ask where the funds for pink products are going. Please research those organizations to see if any of that money actually goes toward patients or research.

I’ll make it easy for you. Below is a list of 4 organizations I think you should give your money and time to, if you’re so inclined. Just skip the rest of the noise….

Breast Cancer Action
Breast Cancer Action is not your average breast cancer organization. We’re fiercely independent and refuse corporate funding from any company that profits from or contributes to breast cancer. That means we can ALWAYS put women’s health first.

We’re focused on achieving health justice for all women living with and at risk of breast cancer. Radical and compassionate, we never shy away from the hard truths. We tell it like it is about breast cancer: 40,000 women die of this devastating disease every year, and we don’t have nearly enough to show for the billions of dollars raised in the name of breast cancer.

BCAction was founded in 1990 by a handful of women who were living with and dying from breast cancer and who demanded answers about their disease. Today, BCAction is a national grassroots organization with members across the country. Together we’re challenging the status quo and working to address and end the breast cancer epidemic.

Metavivor
METAvivor is the only organization in the US that exclusively funds MBC research through a scientific peer-review process. We award research grants to individuals with a clinical or other doctoral degree who are actively engaged in areas of metastatic breast cancer research, and whose proposals show distinct promise in making a difference for the stage 4 breast cancer community.

Our mission is to transition metastatic breast cancer from a terminal diagnosis to a chronic, manageable disease with a decent quality of life.

100% of proceeds from every fundraiser (after event expenses) goes into our research grants.

Breast Cancer Prevention Partners
A science-based advocacy organization that works to prevent breast cancer by eliminating exposure to toxic chemicals and radiation.

BAYS
Bay Area Young Survivors (BAYS) is a support and action group for young women in the SF Bay Area who are living with breast cancer.

Through monthly support group meetings, an online network, and community-building events, BAYS members share information, experiences, and resources. Our goal is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration.

May 6th – Preview Reading of BAYS’ Newest Book

This month, AnthologySF is turning over their regularly-scheduled anthology reading to the breast cancer support group that I’m in — Bay Area Young Survivors (BAYS).

At this event, I (along with a few other contributors to the book) will be reading a piece I wrote for our upcoming book centered around the aftermath of treatment, piecing our lives back together, and climbing these treacherous cancer stairs to get a better view. The book will be available in September 2015.

If you’re in SF, please come out and support us! The event is being held at 7pm at La Movida Wine Bar, 3066 24th Street, San Francisco, CA 94110.

About BAYS:
Bay Area Young Survivors (BAYS) is a support and action group for young women in the SF Bay Area who are living with breast cancer. It was founded in 2004 by two young women because support group meetings with older women did not address our unique needs in dealing with issues related to fertility, child rearing, dating, body image, early menopause, careers, and lack of peer experience with cancer.

The goal of BAYS is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration. We are at each other’s sides during death, births, chemo infusions, and birthdays. Virtually every day of the year we add new members and throughout the year we also lose members to the disease. We welcome the newly diagnosed, to those with recurrent or metastatic disease and long-term survivors.

BAYS achieves it goals by sharing information, experiences, and resources through 3 main services. We offer: over 30 support group meetings annually with free childcare, an active online network, and community-building events to support the emotional and educational needs of our members.

BAYS published an anthology in 2013 entitled, “The Day My Nipple Fell Off and Other Stories of Survival, Solidarity, and Sass.”  We look forward to publishing our newest book in the fall.

IMG_3344

Nora and I in Kauai!

Fast Times at Chemo High

Hopefully most of you out there got my nod to Fast Time at Ridgemont High! In any event, if you didn’t get it (read: mom and dad), just move on and keep reading!

In an earlier post I mentioned what an amazing resource the Bay Area Young Survivors (BAYS) group has become for me.  I recently posted a question to the group asking for insider tips on chemo.  Below is a fast and dirty summary of all the advise I was given. Obviously, chemo will impact every individual differently, so this is just a list of some things that worked for other people. I will likely pull from some of it — but won’t really know until I’m in it and feeling the side effects.

It’s worth mentioning for all my neoadjuvant readers out there — message me!– we can totally swap stories; since you are probably scared of the mastectomy/surgery and I am scared of the chemo! We can help each other out 🙂 For my readers who don’t know what neoadjuvant means — not to worry — you shouldn’t know what that means unless you  are intimately involved with cancer! So I shall explain, neoadjuvant is a protocol where a person undergoes chemo prior to surgery and tumor removal.

Just to recap — as you recall, I, on the other hand, had my surgery/tumor removal first and, since I am triple negative, I cannot be treated systemically with hormones (read: my cancer is not fed by hormones).  SO, post-surgery, I have to undergo chemo to ensure that no tiny cancer cells that were a part of this breast cancer traveled any place else in my body and set up shop to hide out. If they did this, they may wait 2, 5, 10, 15 — who knows, how  many years, to gather together in some other vital organ of mine (bones, liver, brain etc). If that happens, my cancer will have “metastasized” and be very difficult, if not impossible, to treat at that point. That, my dear friends, is why I have to undergo chemo!

OK – lesson is over for the day. Now you all understand why I still have to undergo chemo even though I already chopped the tumor and both my boobs off!

Advice from other chemo cancer warriors (in no particular order):

  • Have friends drive you to and from chemo each time.
  • If you are triple negative, it’s something you have to do.  Smile and get through it.
  • Don’t let your Mom move in with you!!!
  • Surround yourself with good friends and positive supportive people.  Have a couple of people who can run errands for you, or get stuff “last minute”.  Neighbors are great.  Keep a list of resources.
  • Don’t have any expectations about how you’re going to feel every day.  It’s an adventure.  Every day is different.  The first session knocked me on my ass.  The second week was easier and I felt GREAT!  It might have been from juicing, who knows.  Sessions after that varied.  Just because you feel great, you can’t expect that the next day, and vice versa.
  • Get acupuncture or other complementary treatments to help with side effects.  I had migraines for three weeks that went away with 1 acupuncture treatment.  I also took Chinese herbs.
  • Have your friends at least drive you home, sometimes I was so out of my head I didn’t remember a darn thing.  It’s nice to have friends there for the chemo too!
  • Drink lots of fluids.
  • Don’t drink alcohol (oh crapperpants! PS – This is Andrea saying that — as I LOVE my vino — ugh, shitterpants. All I have to say is that medical marijuana really better be good!! Good enough to replace wine. Now that’s saying A LOT).  It’s already hard enough on your liver to process the chemicals.
  • Get lots of sleep.
  • Have organic high quality chicken stock on hand in case you can’t eat anything.  I was throwing up Ensure which I thought was good for me instead of eating.
  • Ginger candies help with nausea.
  • Marijuana helps A LOT!  For pain, nausea, appetite.  I’m a huge proponent for medical marijuana now.  Get edibles to prevent lung problems.  Also helps distract you from what’s painful.
  • Don’t eat anything raw; eat lots of cooked veggies.
  • The first time I went in for chemo I brought yummy snacks, fave magazines, good music, and gourmet popsicles. Then I was told I couldn’t get the infusion that day; a friend who’s been through it said, “you dodged a bullet! don’t bring anything you actually LIKE in there with you, because after chemo you’ll never be able to stand it again.
  • Bring the crappy magazines and the shitty popsicles and anything else you want to permanently have an aversion to. Ha! Only too true.
  • Try to balance having things on hand that you enjoy with the aversion therapy that’s coming.
  • Don’t eat anything that you like because you might not like it after chemo.  I ate lots of mac and cheese and gummy candies.  I allowed myself to feed my cravings.  I don’t think that’s bad.
  • Don’t drink anything out of metal containers if you are getting drugs that are metal based.
  • Don’t hang around anyone with strong scents.
  • I didn’t go for the “comfy” clothes.  I went for things that wouldn’t stick to the chemo seat (no skirts) and bright colorful fashionable clothes that made me feel good.  Wear socks.  If they don’t have fluid warmers you’ll get cold from the room temp fluid going into your system.  Bring a neck pillow if you like it.  The Benadryl made me sleepy.
  • Reach out for help, like you did, company, advice and all that.  We’re here for you!
  • Have UCSF write the marijuana recommendation (free as opposed to $100 bucks here in SF) and use the Green Cross in SF (cheap).  They deliver anywhere in SF and give you a 10% discount if you refer someone.  They’ll also give you 10% off if you get it delivered to a care facility (Andrea here, this is a Bay Area-only recommendation peeps!).
  • You don’t have to spend the $103 to get the marijuana ID card that I did, if you want access to medical mj. If you order from Town and Country, all they ask is for a doctor’s letter (Andrea here again, this is a Bay Area-only recommendation peeps!).
  • In case you didn’t know, you can get massages or acupuncture during chemo at Garrett’s. You just have to set those up with Lisa or Deb (Andrea here, just FYI for all of you out there, this piece of info is specific to my chemo doc Garrett Smith).
  • TAKE THE ATIVAN. Trust me on this one, and take it every day for the 5 days after. God made Ativan because he/she loves us and wants us to know it. I think that you should know that everyone tolerates chemo a bit differently, and you may not have any of the side effects that the girl next to you does – it really varies so breathe and take it as it comes, it may not be as bad as you might have made up in your mind, it wasn’t for me.
  • Try acupuncture twice a week during chemo – once right after (like 2 days) to move it around then once a few days after that to cleanse out the bad dead cells your chemo got in there and slaughtered! Made all the difference for me.
  • Hydrate like crazy and be selfish, if someone is with you and you are annoyed tell them to go get you a turkey club and take a walk. I wanted a turkey avocado every time, sounds odd but worked for me.
  • I second what everyone’s said about hydration, hydration, hydration.
  • Get a pair of noise-cancelling headphones — they were a dream during chemo infusions because of all the beeping and noise around you, and I could put those on and drift off if need be, or just have a respite from all the clamor.
  • Keep exercising as much as you can stand through the entire process–long walks, swimming, gentle yoga, whatever you can do. It will help you recover, keep sane, and boost your health.
  • Every individual’s journey is different, but I found that surrounding myself with people I love, keeping a positive attitude, and — if you can manage it — finding ways to get complementary care such as acupuncture and massage, as well as, weekly exercise and mind-body techniques can help a lot (whether it’s short walks, yoga, meditation, strength training, etc.).
  • Check out this book: Chemo: Secrets to Thriving: From Someone Who’s Been There. I read it in almost one sitting and used several of the tips in there (many of which have already been mentioned on this message board).
  • One more tip – you can get a temporary handicapped parking placard from your local DMV if you are on chemo. If you go on the CA DMV website, you can find the application and have your doctor sign it. I found this to be huge in terms of saving money and time when going to not just infusions, but other doctor appointments.
  • I had trouble reading or watching TV while on AC  (dear reader, Andrea here, A & C are two of the chemo drugs) but I never realized that that was something that could have been fixed! So yeah, complaining is good.
  • I agree about Ativan and have something in your stomach before chemo.
  • Also wear something with easy to pull up sleeves. No need to bring your own blankets – they have them there.
  • I usually ask for extra saline after my chemo, which I think would be especially helpful to you if you’re not a good drinker (I’m not) – I was told by my first oncologist that it’s possible to get permanent bladder damage from Adriamycin  (dear reader, Andrea here again! this is the dreaded “A” that we keep referring to) if it sits in your bladder at high concentrations for too long.
  • Keep in mind that there are lots of different anti-emetics (the anti-nausea pre-meds that you’ll get). If the ones they’re giving you aren’t working for you, ask for a different one.
  • I would definitely recommend having someone with you on your first chemo, at least. I wasn’t able to drive myself home after AC treatments, although I get what the others were saying about sometimes wishing that that person wasn’t there so you could just zone out.
  • I suffered a lot in the early days of chemo because I figured, it’s chemo, of course it sucks, what’s the point of bringing it up? But when I did mention the side effects I was having many were totally avoidable. So COMPLAIN!
  • Other things — I would try to eat something right at the beginning of the infusion so it didn’t hit an empty stomach (not a fun feeling), as well as the tons of water. Which does mean you’ll have to pee a lot while hooked up to the IV so sweats are good, or comfy skirts. I also got a fleece poncho which I would wear every time to avoid the sleeve hassles (take off the sweater? Or pull up the sleeve and not be able to take it off for hours?). But once I finished the AC and started Taxotere I was so hot all the time that I retired the poncho. It just made me hot, I don’t know. Who knows whether the ACT makes you hot or cold! Could be either.
  • I also always had someone come with me to keep me company because it seemed so scary (plus I needed a ride home)– but to be honest after a while I began to wish I hadn’t set it up that way and just wanted to be left alone. It was hard to have to talk to someone when I felt so fuzzy headed, or even when I didn’t. I think I might’ve preferred to just lay there and listen to an audio book or sleep or something. Especially when I started getting the benadryl with the Taxotere, I would be so out of it. So maybe try it both ways and see what works for you?
  • Having friends at the infusions was great. I usually had between 2-5 friends and my hubby each time and the time flew by.
  • Also drink lots of water. I also drank Gatorade. I felt it helped the muscle cramps.
  • You will get tired and you should rest, but I found walking in the days I could helped boost my energy.
  • I had crazy fluid shifts and weight gain and loss along the cycles. Don’t worry too much about it all, just get through it. It’s nice to be on the other side of chemo. You’ll be there soon!
  • Ativan the day of, and before, treatment.
  • Someone sitting with me to distract me during the infusions.
  • Lots of whatever liquid sounds okay during the infusion (which takes HOURS). I also drank everything with lots of ice, hoping it would help with mouth soars. I didn’t get them too bad, so maybe it worked…
  • Believe it or not, mellow snacks. Bananas, rice, crackers, PB&J, whatever you eat when you feel sick to your stomach. The steroids make you hungry, but you also feel sick.
  • Easy-to-remove-with-one-hand pants. You’ll have to pee while hooked up to the IV, which can be tricky.
  • Warm, fuzzy hat and socks, even if you are usually a warm person.
  • My in-laws caring for my son overnight on days 3 and 4, my “worst days”. My son would have been a mess if he had witnessed me so sick.
  • An iPod with music you love and thoughtless magazines. Between the steroids, Benadryl and chemo meds, you won’t be able to concentrate on anything much, but looking at pictures and reading things an 8 yr old could read are at least distracting.
  • I couldn’t read for a week after my 1st infusion. Nothing, not a word (and I prefer reading books over watching TV). It totally freaked me out, I told my Oncologist, she reduced my steroid IV to 1/2 the dose and it didn’t happen again. Communicate with your doctors. They can only help you if you tell them what is going on with your body & mind.
  • I had one thing that really helped me both through AC and through Taxol infusions (but, particularly the AC).  I always brought a big bottle of sparkling water and drank the whole thing while there.  Not only did it seem to help my hydration, but also the bubbles made my stomach feel good.   Never got horrendously sick to my stomach, so you never know; maybe the bubbly helped :).  I had it on hand all the times
  • Develop a relationship with the phone nurses. I called them every week about some new, even if little (e.g., I’m always sneezing for 48 hours after chemo) side effect. they were wonderful, as they would either look at a photo of the side effect (like a rash), talk me through it, call in a prescription, or ask me to come in. so, yes, speak up.
  • Chemo is cumulative so you may feel more tired or sore at the end. Don’t worry, as you’re also young and the body is resilient. Even a week off of treatment has helped me.
  • Keep moving! I walked a few times a week, even did elliptical and weight lifting for a few weeks early on. I think it helped me not be so tired.
  • Acupuncture is key for me to dealing with side effects like tingles or hot flashes. My acupuncturist talks about making sure to give back to your health and body, since chemo is stripping healthy cells away.
  • Work on being explicit for what you exactly need from everyone – husband, friends, family. people will be afraid to do the wrong thing. We set up a meal train website to put dinners, errands, visits, walks on there. It was a hard decision, because I love to cook and couldn’t imagine myself wanting or needing help; same with my husband. But that website has been a lifesaver when after chemo I’m starving but too tired to think straight about food, yet alone handle an open flame.

See? What did I tell you? BAYS is a friggin’ life-saving group! I see a few patterns here, ativan, hydration, no empty stomachs, transportation, friend/family support, medical mj, exercise and communicate with your onc team! All, impossibly good advice, THANK YOU!

I am still awaiting the results of my Oncotype test — which will determine if my chemo is the full ACT or just the CT.  Stay tuned for more information as it comes in. I should know by the end of this week, if all stays on schedule

In the meantime, I’m still going to PT three days a week. Man, does it ever kick my ass! I’m starting to think that Julie Wong has it out for me and is secretly trying to torture me (jk jk jk, not really!, no, no, jk jk jk jk) Julie, I know your whole office reads this blog, so of course I’m kidding — well, only sort of!

Tomorrow I go back to see Dr. Hong to get my spacers filled even more (oh joy!). I am hoping to buck up and let him put two syringes worth of saline into each spacer (lord, has my life really come to this?! I ask you?  Seriously, I live and breathe cancer these days — it’s truly a full time job!) Oy!

Well, my mission this week is to allow Dr. Hong to let me take a picture with him and post it to this blog. I am under very strict instructions from him NOT to blog about him  EVER (I’m obliging his wishes somewhat and keeping my commentary to a minimum on him — though I can’t resist saying he is the BEST in the world) — so perhaps he’ll allow me to treat you all to at least a photo of the two of us. Fingers crossed!……