Pink-tober

September 29, 2022

Summer has always been my favorite season – it’s warm, sunny, and my birthday is in the first part of it.

Growing up in Wisconsin, fall meant cold and snow. Now fall means spending 31 days with everything awash in pink for breast cancer awareness month. …I’m not liking fall even more now.

Don’t get me wrong, awareness of breast cancer is important – critical. Even more important is that we find a cure. The only way to find a cure is to fund research. “Awareness” ≠ “ending breast cancer”.

We need to make October Breast Cancer Action Month. But be cautious in how you act and what you support.

Pink and the ribbon are great ways for companies to make money – often without doing anything to actually help support breast cancer research or those dealing with it.

When I first moved to Colorado I saw there was an option for a breast cancer license plate. I asked where the additional $50/year for that plate went. They responded that by having it on cars they were raising awareness. Nice idea, but not really helpful. $0 toward breast cancer and $50 to the DMV.

If you are looking to support the cause this October, ask questions about where your hard earned dollars are going. Please consider supporting organizations that focus on research and in particular research for metastatic (stage 4) breast cancer. Metastatic breast cancer is the only one that kills. If you cure stage 4 breast cancer, you cure all breast cancer.

My current top 5 organizations — with a focus on Metastatic Breast Cancer (MBC). Reach out if you want more info. I could talk all day long about this!

  • Breast Cancer Research Fund: Dedicated to ending breast cancer through support of research; 40% of their research dollars go toward MBC (close to $20 million annually). Every dollar donated this month will be matched – you can have twice the impact!
  • Metavivor: The only organization dedicated to MBC research and support. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up in the colors of MBC (teal, green and pink).
  • Lobular Breast Cancer Alliance: Alliance of organizations, doctors, patients, and allies dedicated to learning more about lobular breast cancer. Invasive lobular breast cancer typically does not form a lump and is difficult to detect on imaging, so difficult to diagnose.
  • Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40.
  • Young Survival Coalition: Focused on supporting young adults (<40 years old) diagnosed with breast cancer.

Science – August 15, 2022

Summer is slipping away, I noticed the air felt different yesterday afternoon during a walk. I’m sitting outside as I write this listening to the soft sound of rain. The monsoon kicked in and we’ve had a lot of wet afternoons and evenings.

Update short version:

I had medical appointments last week.

My CT scan (which is imaging of my chest, abdomen, pelvis) was “stable”. Excellent news! We DO NOT want the cancer to migrate to the soft tissue organs. It’s much more difficult to manage.

My tumor marker blood work rose again (not great, we want lower, not higher). This alone is not evidence of how things are going.

My oncologist is good with the CT scans so we continue onward. The new medication may be working. (I’m nervous and concerned because I have lobular breast cancer which can migrate to the GI track and other places and it does NOT show up on imaging.)

So, onward! More medication, more walking daily, more trying to be intentional. I hope you all are living each day to it’s fullest. You are not guaranteed tomorrow.

If you are on Instagram my MBC account is @nottodaymbc

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Longer version. I’m in a clinical trial where I don’t know if I’m getting the extra medication being tested or a placebo. In researching it more, I’m thinking I just want the actual meds. 🙂 They are FDA approved for this use, the trial is to see how effective they area.

I’m a HUGE advocate and proponent for science. You all know that.

This clinical research trial (CRT) is basically taking the “regular” medicine alone vs. taking the “regular” medicine with an “extra” medicine. The phase II trial showed that the “extra” medicine extended the time before a breast cancer patient had progression. (Progression is when the cancer finds a way to grow.) The trial I’m currently enrolled in is to determine how much more time a patient gets before progression.

Like I said, I’m all about science.

But this is personal. This is literally a matter of life and death.

I might be getting the “extra” medicine and then that would be great. I might be getting the placebo and missing out on the benefit of the other meds.

I don’t think I’m willing to risk not getting the “extra” medicine.

If I withdraw from the trial will it set back science? Yes, maybe a little.

Will it give me piece of mind to know I’m getting the actual meds and not the placebo? Yes, for sure.

What if I’m already getting the “extra” meds? I don’t know. Maybe I am, maybe I’m not. There is a 50/50 chance.

I’ve been thinking about all of this a lot; especially since my cancer tumor marker bloodwork is not great. Why are those numbers rising? Is it because they are unreliable or is it because this lobular breast cancer (that doesn’t show up on imaging) is growing in some other area?

So. Much. Uncertainty.

I really thought that science was more concrete than this. This is more like art mixed with science with a dash of uncertainty sprinkled in.

So what to do?

  • Stay positive – do whatever I can to keep a positive mindset and know that I’m doing all I can to be as healthy as possible.
  • Be informed – try to read as many scientific articles about this trial and the medication as possible

Meanwhile, life.

Cara was here visiting and we went to Colorado Springs for ziplining and whitewater rafting.

Evelyn moves in to the dorms today at the University of Colorado.

Maddy starts her sophomore year of high school on Thursday.

Glen and I celebrated our 21st wedding anniversary last week.

I’m not letting life pass me by and you should not either. Seize the day.

Rafting on the Arkansas River. I’m in the bright pink shirt. Cara is middle row closest to camera and Maddy is far side of the boat, second back.
Hiking with Glen, late July. We are so fortunate to live somewhere with beautiful vistas!
Maddy spent 5 days in Wisconsin and then Cara 5 days here. We went to Meow Wolf in Denver and then to dinner as a last family adventure before school starts.

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Current treatment:

Fluvestrant (Flaslodex) monthly (2 shots) – Selective Estrogen Receptor Degrader (shuts down estrogen)

Lupron monthly (1 shot) – puts me in menopause

Zometa, quarterly (infusion) – bone strengthener

Maybe Verzenio (CDK 4/6 inhibitor) or maybe placebo (clinical research trial: postMONARCH)