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.

 

16 thoughts on “When Will You be Done?

  1. I too am living with mets. I will be 3 yrs next month. I get the same question as well. I go every three weeks for an infusion of Herceptin and Perjeta. Blessings to you.

  2. Just a year diagnosed for me with mbc. On my 3rd type chemo. Not sure if this will be the one I stay on for awhile. So many more questions I have that go unanswered. Staying strong and positive.

  3. I’m living with mets too (liver, lungs, bones) for over 13 years! My doctor calls me his superstar. I get the same question, and my answer is “When I am dead”.

    1. I was diagnosed with mets that spread to my bones 7 months ago and living my life very optimistically. Hearing from a 13 year survivor gives me incredible hope and inspiration. God bless you.

    2. That is great. U know what I mean. I am only one year and half w it in my bones. U give me hope. God bless you and may u continue your fight.

  4. Hi, we have never met. But we should. We have mutual friends ,live in same area, kids same age , same lobular mbc, same dr. Mary Kuhn told me about you when I ran into her at Byerlys and I mentioned one of my onc. But I was just losing my eyebrow and eye lashes ( hair no big deal, got a great wig ) probably was not ready to talk about cancer , AGAIN ! So never got your number.
    I just read about the wine event in the sun sailor, I’m going to try to attend and bring a whole new group of ladies who are very supportive !

    Love your blog and what a great inspiration ! Hope to meet up on Thursday .

    Diane

    1. We do have a lot in common! I’d love to meet you and your great friends! Thank you for reaching out and I’d love to connect. We could be sitting in those blue chairs next to each other. 🙂 Hope to see you at Wine Night!

  5. You are an inspiration. I have stage 4 in my right breast, the lymph nodes under that arm and in my bones. I have tried 3 pills as of November 2014. Mine is estrogen receptor. The polls did not work, so as of May I have three treatments, one every 4 weeks. No hair loss, just body blisters and swollen feet. Would like to keep in contact and share our journeys.

  6. You are amazing and I am in constant awe of your strength and perseverance! Here’s to hoping that “fire wall” stays strong! Many prayers for you and your family , my friend 🙏

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