Get braced for Pinktober.

Please watch this video before you bite into your crispy KFC that arrived in a pink bucket.

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Once again its Pinktober

Except I do not celebrate Pinktober. At this time of year I look forward to apple picking, Columbus Day weekend, leaf peeping, and Halloween (which is the best annual excuse for a sugar high).

I am braced for the onslaught of pinkness and really do not care for it. I will not be walking, running, shopping, or donating for anything pink. Because of Pinktober, I actually resist contributing to anything pink for the month.

And it is also Liver Cancer Awareness Month.

I think this year I will support Liver Cancer instead of pinkifying anything.

Good intentions gone bad.

The heights of stupidity are being reached for pinktober.

Let me count the ways. First of all, an NFL player who lost his mother and four aunts to breast cancer is being fined for having the words 'Find A Cure' and a pink ribbon on his eye black (those are the stupid little black rectangles of paint under their eyes, in case you didn't know - like me). He has had these for the past five seasons and now it is a problem for the NFL, which covers itself in pink each year. So they fined him $5775. Really? Everything else can be pink but he can't express himself?

Talk about a double standard - the league can be pink but he can't show his support. I wouldn't have a problem if the NFL didn't go pink every year.

What about 'Knitted Knockers'? Yep, a bunch of knitters in South Carolina create them for breast cancer patients to wear after surgery. These foobs are made out of soft yarn and stuffed with cotton to wear after mastectomies against the skin.

So what if they are the wrong size? Its a nice idea on some level but on most levels its just wrong. Especially the name.

Finally, pink beer. Yep, a brilliant bar has decided to serve pink Michelob Ultra to raise awareness for breast cancer. It is not clear if any extra money is being raised through this. So do the drinkers of pink beer think their purchases help raise funds for anything related to breast cancer? I think we have trained people to think if something is specially labeled or colored its purchase is helping the cause, not just awareness.

Good intentions gone bad.

I can tell its Pinktober

Yes I admit I can be a news junkie. I also like to follow information on my (many) ailments. I get daily Google Alerts for most of them so I can be one of the first to know about the latest treatment options.

I can tell its Pinktober. All my breast cancer news includes the words 'awareness', 'pink', the s-word, or other related terms. Yesterday's alert included these items:

"Harford observes breast cancer awareness month"
"Breast cancer survivor finds comfort in delivering flowers to other patients at Texas hospital"
"WATCH: 29 year old beats breast cancer, gets featured on Pink Ribbon Connection"
"Breast cancer awareness chili cookoff Saturday"
"Breast cancer survivors event"

This drives me crazy. Please stop spending money on pink and spend the money on more important things like research.

Metastatic breast cancer awareness day

Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade

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5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment


In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:


1. When will you be done with treatment?


The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.

2. I thought breast cancer had a cure?


You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?


3. But you look healthy?


When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.

4. But you got the “good cancer?”


HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?


5. Men don’t have breasts, they can’t get breast cancer?


Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.

For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.


Jill's news:

I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.

Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib. 

He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.

Healthline

Healthline

On to November

Pinktober has ended and I personally am glad. Although I figured out the best way as a metster to "celebrate" it (by spending time in the hospital), I am so glad that the end of pink products and pink washing may be over. To learn more about pink washing, go to Think Before You Pink.

A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.

Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.

Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.

Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.

When I have more to report I will check in. I might wait until I know about everything.

Pinktober means

I have never, not even once in thirteen years, danced with "NED" in my dance with metastatic breast cancer. NED, of course, means no evidence of disease. I started off with bone mets, and once with them, as with a broken bone, there are always leftover reminders. So no, I've never danced with NED.

I've also been overwhelmed by the newest mets-sisters belief that they are dying of mets; that pink is not a cure; and that there is nowhere near enough research on mets. The second and third bits are true: pink isn't a cure and the NCI still funds too little towards any metastatic cancer.

But I have have a hard time grasping the first point. Am I dying from mets? How does that explain 13 years of living with it?

I remind myself that at the very beginning of this dance with advanced cancer I dreamed that my house was too noisy with other people I didn't know. I ran from room to room asking them to be quiet. And when I woke up, I realized that the house was my body and the people were my tumors. I gave my cancer a chance to quiet up and I would give it a home forever, because if I died, my cancer would die.

That's still true after 13 years, and I have to remind myself of it, especially now that I'm involved with younger activists who argue differently. I still want to be involved with them. They are the future of metastatic cancer.

I just am not ready to die.

Think Before You Pink.

The day we died on the Capital.

Awash in Pink.