Tag Archives: advocacy

When Will You be Done?

This is the question I hear most frequently from people.  They see my hair growing back and assume either I’m done with treatment, or must not be going through treatment at the moment.  The answer is, I will never be done treating for metastatic breast cancer.  If I am “done” with treatment, it will mean that I’ve decided the disease has progressed so far and fast that treatment will do nothing but further diminish the quality of my life.  At that point, I’ve decided I won’t put myself through the side effects and will spend the time I have left with my family.  I’m already considered an “exceptional responder” in that I’ve survived more than 5 years with mbc.  The odds of that are only 1 in 4.

I am still actively treating.  Currently, I’m on an IV drug called Gemzar or gemcitabane. The side effects include flu-like symptoms, fever, nausea, fatigue, and lowered platelet counts. Hair loss is minimal and mostly consists of hair thinning.  I have treatment once a week for 3 weeks and then have one week off.

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Treatment starts

The off week happens because usually, after 3 rounds my blood counts have lowered to the point that it would be dangerous for me to have another treatment.  The off week gives my body a chance to recover and get ready to do it all over again.  My last scans showed that this treatment is holding things steady.  It doesn’t mean that the cancer is gone or has gotten less severe. It means that the chemo is keeping things in check and more or less, nothing new has grown.  I have a few new spots, but they are small and some other spots have gotten a bit better.  So, the fire wall is holding and we are keeping things at a nice, slow, contained burn.

 

In the meantime, I do what I can to support my body and me.  There is no magic or nutritional cure for cancer.  You can support your body and immune system, and I do. But eventually, the cancer will outsmart your immune system and spread.  This doesn’t mean I give up and don’t do what I can to help myself.  I like to say I’m a “realistic optimist” and I do all kinds of things nutritionally and otherwise to support my mind and body.

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How I look a few hours later. Blaghh.

I’m fully aware of reality and what can happen.  I’m just hoping it doesn’t happen for a long time. That’s one of the scariest parts of living with the unpredictability of this disease. Things can happen so quickly.  Even though my scans look stable there is a tiny part of me still nervous.  This is because I have lobular breast cancer and my tumor markers are at one of their highest points ever. Usually, when a chemo is really working, my markers will go down. Lobular bc is notoriously hard to see on scans.  It grows in sheets, or fingers instead of compact tumors.  Which makes organ involvement harder to spot.  But for today, I’m good and I’ll stay with that!

 

Despite being on Gemzar I’ve been busy.  I’m not sure how chemo side effects and timing have worked out so well, but they have.  We’re gearing up for Ladies Midsummer Wine Night, our annual fundraiser for mbc research.  This year we hope to break the $100,000 mark!  I also gained a greater understanding for why supporting small research grants is so important.  In my enthused, energetic chemo break last winter I applied to be a consumer advocate for the DOD Breast Cancer Research Program.  I was accepted and served on a committee looking at incoming research grants.  I’ve never been in a room with so many MD/PhD labels! IMG_2492 Before research grants can apply for certain funding levels, they have to support their proposal with preliminary data.  Many researchers have fantastic ideas, but don’t have the funding to gather this preliminary data and take their ideas to the next funding level.  This is what Team Judy helps to support with our mbc grants.  We choose a researcher to support at the Masonic Cancer Center, University of Minnesota, so they can gather their preliminary data in order to apply for the larger DOD and NIH grants.  It’s disheartening when you realize how few research dollars goes towards metastatic research.  Over 1600 Americans die every day from metastatic cancer.  We must find a way to figure this out.  It’s also why I was happy to participate on a panel at the University of Minnesota Cancer Moonshot event on June 29.

IMG_2470Too many Americans are dying from cancer. We need to collaborate and share the data that comes out of publicly funded research grants.  Often times, large institutions delay in sharing their data.  That’s not cool, so to speak. We also need to look at all sides of the problem.  We can’t just focus on prevention and treatment of curable cancers.  If we don’t understand how cancer metastasizes then we are missing vital pieces of the puzzle and won’t have a clear picture on how to control metastatic disease.  If you’d like to help Team Judy support metastatic breast cancer research grants you can donate to our crowdfund page.  100% of what we raise goes directly to the labs of researchers at the Masonic Cancer Center, University of Minnesota.

 

108 Every Day

Yesterday I celebrated my 53rd birthday, my fourth birthday since being diagnosed with metastatic breast cancer (mbc). While I was able to celebrate another year of life, 108 others with mbc in the United States died. Today, another 108 people will be robbed of their next birthday and tomorrow 108 more.  Each and every day 108 mothers, sisters, friends, cousins, husbands, brothers and sons with metastatic breast cancer die. It has to stop.

This past weekend I attended the Living Beyond Breast Cancer conference in Philadelphia with over 300 others with mbc. The conference began by asking those in attendance to stand up according to the number of years they have been living with mbc.  First, those diagnosed 2 years and less stand, then those diagnosed 2-5 years ago and then 10 years or more.  The largest number stand for 2 years or less.  By the time we get to 10 or more years there are only a handful standing.  We clap and applaud these exceptional outliers, each of us secretly hoping that will be us some day, but knowing the reality is unlikely. From 2000-2013, 15 billion dollars was raised for breast cancer research,  but of that 15 billion less than 7% was spent on research for metastatic breast cancer.  You can read the study in its entirety on the MBC Alliance website. This year the LBBC conference trained its first group of Hear My Voice advocates, but advocacy takes time and time is one thing people with mbc don’t have, so out of frustration a die-in was organized, Why I Organized a Die-In, and Philadelphia Story.  108 of us gathered together and got down on the floor. We closed our eyes; some of us holding hands, and recognized our greatest fear. It was hard, really hard, lying there and knowing that one day I would most likely be one of the 108.  I lay there thinking about all of the things I was probably going to miss, my son’s graduation from med school, grandchildren, vacations, all of the milestones and memories that make life so precious. I thought of the increasing number of young women being diagnosed with mbc and what was going to be taken from them. The picture of us is dramatic, uncomfortable, but mbc is not pretty. It’s hard to visualize the reality of living and dying with mbc when others look at me. I don’t look sick.  There is a lack of congruence when you see me and think of the 108 who die each day.  But when I was on the floor with those other 107 the reality became evident.  My hope is that someday mbc will become a chronic illness, similar to what we’ve been able to do for AIDs.  People with mbc are starting to develop their voice, I hope the world starts listening.