The Walks…

questions-to-ask-before-you-walk-300x211Most of you have probably seen the Breast Cancer Action “4 Questions” campaign that was released last week. The focus is on four questions we should each be asking before we participate in community cancer (or really any fundraising) walk to ensure we know exactly what is happening with the money we are working so hard to raise.

1. How much money raised from the walk will go to breast cancer programs?

2. What breast cancer programs will the walk fund?

3. Do the walk’s sponsors increase women’s risk of breast cancer?

4. Does the walk present a one-sided picture of breast cancer that leaves some women out?

The best place to start finding answers is here. To learn more, please consider the upcoming BC Action webinarMore

Advertisements

Call to Action – 2 Minutes of Your Time

 

call-to-actionA QUICK introduction:

  • Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
  • MBC research accounts for roughly 7% of research funds – including prevention of mets.
  • Death rates have hardly changed in 30 years.
  • Most metastatic research of one origin can help those whose cancer started elsewhere.
  • No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

Lives depend on it.

Metastasis Research Petition

A journey to the heart of the EMA – Patient-Voice – From Cancer World

A look into the growing role of patient advocates in the European Medicines Agency (Europe’s version of the FDA).

Flexibility and goodwill have allowed patient involvement in the work of Europe’s drug regulators to develop at an impressive pace. But will they be enough to withstand the strains on the relationship

Source: A journey to the heart of the EMA – Patient-Voice – January-February-2016 Issue 70 – Cancer World – Shaping the future of cancer care

The Wig

100_0325

wigtowne.com

I haven’t been out and about as much as I’d like lately. Taxotere is taking its toll, and fatigue is reaching further and further into my life. What was originally a few days of being tired is now a week or more, leaving a week or so of time when I’m feeling good before the next cycle begins. I’ll take the days I have with gratitude, believe me, but it leaves little time for socializing. Most of my “good” week is spent running errands, catching up on my advocacy work, and getting some good writing time in.

But this was a good week – and I got out more than usual. I had a CBCRP meeting in Oakland and the bar mitzvah of a family friend.

For occasions like these, I spend more time than I should thinking about my head. It’s nearly bald – shaved close but not off – and I’ve been spared total baldness in favor of “fuzz.” The irony is that I gave up my long, curly fuzz for the short fuzz of a buzz cut.

IMG_3676.JPGThere are practical matters to consider. Walking around bald doesn’t bother me, but it can be awfully cold! Scarves help, and it’s what I wear most days. But TSA can make me remove a scarf, and that’s a hassle. Plus there’s the shocked stares of pity by those around me, which I really can’t stand. So I decided to wear my wig to the conference. It got me through TSA in both directions, though it itches quite a bit and I worry about it moving around. To me it looks so obviously like a wig, but only a few in the know agree. I’ve had a number of compliments about my new ‘do, so I guess I’m fooling most of the people some of the time.

Fast forward to the bar mitzvah. It was the first time I’ve been in synagogue in a number of months, and while many friends know that I’m back in chemo, it’s not – of course – part of their daily awareness. The experience is very different – close friends do a triple take before they realize it’s me. I know my curls were my signature feature. I could have gone with a curly wig, and that might have made things easier. But I wanted something a bit different. Nothing drastic – I’m not the type to go green or blue, let alone pink, but something that could make an otherwise miserable experience fun was in order.

So I’m never quite sure how to approach someone. Do I start with an introduction, which seems awkward, but not as strange as the “who the hell are you?” look I sometimes get. Or do I let them go from confusion to concern to shock to recognition? I try to stay with John, to provide a context and make things easier…but even that doesn’t work. I’ll never forget the time, back in 2002, when a very dear friend was upset with John for bringing another woman to synagogue while his wife was sick at home – until she figured out that it was a wigged me.

It’s been an interesting social experiment, and one that I hope isn’t making others too uncomfortable. I’m no less sure what to do than I was 14 years ago, but I’m still here asking the questions!

The Tax Man Cometh: California Breast Cancer Research Program

logo

 

Yet another in the alphabet soup of breast cancer organizations, right? Wrong!

There are countless organizations – and even more letters – in the world of breast cancer. A few stand out, and this is one of them! The CBCRP is much like the DOD’s CDMRP (aka “the DOD”), for those familiar with THAT effort. It is a California state research program that seeks to fund breast cancer research that is, in many ways, unique to California. With our unique perspective, diverse environments and ethnic diversity, we can do things other states can’t. CBCRP has two foci – investigator-driven research and program-initiatives objectives. CBCRP funds high-risk, high-reward research throughout the state.

I am honored to serve on the committee that helps administer the program, and I have a front row to the unique research we fund. CBCRP priorities include a focus on addressing primary prevention, understanding breast biology, and improving detection, treatment, survival and outcomes. There is a particular interest in the role of and unequal burden from environmental exposures, as well. Additional, CBCRP places a premium on the involvement of advocates in research, and reserves funds for community-initiated proposals.

It is the largest state-funded initiate of its kind! More

People Say the Darndest Things

tumblr_lv6hjakojc1qbpwzeo1_500

Life with MBC. There is so much that is misunderstood, unclear, and even unbelievable. For those of you new to this, MBC is metastatic breast cancer, or stage IV breast cancer. Once breast cancer takes up in a distant organ it becomes deadly. It takes the lives of over 40,500 Americans each year. And even if we don’t die from it, we die with it.

I truly believe that most people are well intended, and I don’t fault them for what they don’t know. So while I know others rant about the insensitivity (because the reminders truly can hurt), I thought I’d dispel some myths and offer some better options – at least for me.

Breast cancer is curable. Really, it’s not. Let me repeat that: breast cancer is not curable. More

In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy. More

Do You Know What Your Trial is Doing?

clinicaltrialClinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate. More

Excuse the Dust

It’s been a number of months since I was last able to post – about which I’m both sorry and personally bummed. But hopefully I’m back! I travelled to Lisbon (and Paris) back in early November (a report about the conference and my poster are long past due) but my trip ended up being a bit of a mess. Thanks to treatment side effects, but the time I landed in Lisbon the soles of my feet were covered in layers of blisters and even a week later when I left Paris I could just barely hobble on the cobbles. It’s been a roller coaster ever since, so here’s a quick update: More

Uber Me This

IMG_0056Uber has been on my radar for at least a year – probably longer. The first time I used this crowd-sourcing, ride-sharing service was last spring, on the way to the airport with a colleague. While it was convenient and easy, I still harbored suspicions about regulations, safety and whatever other excuses cropped up. Fast forward to a girl’s night out a few months ago. We were going to a nearby “Paint and Sip,” with particular interest in the sipping. Neither of us were enthusiastic about driving – and then I remembered Uber! It was a great choice – everyone got home safe and sound. More

Previous Older Entries Next Newer Entries

%d bloggers like this: