life – Life As I Know It

Metastatic Breast Cancer Awareness Day

October 13, 2025

Today is Metastatic Breast Cancer Awareness Day. We get this one day in breast cancer awareness month to shine a light on MBC.

1 in 3 of women cured of breast cancer
will be diagnosed as stage IV (MBC), which is terminal.

If we cure Stage IV, we cure all breast cancer.

In support of raising awareness for MBC, I went to Washington D.C. last week and participated in the METAvivor Stage IV Stampede and Summit.

The Summit included a day of education about MBC as well as how to advocate for various bills and funding.

Tuesday we marched (with police escort) from our hotel to the Capitol. We had a remembrance on the grass. I am holding the sign on the end, near the last “R”. We spoke the names of those who have died from MBC (and I included my aunt Jeanne Moretti as well as several other friends who have passed).

Policy advocates preparing to visit with Congressional staffers.

We met with staffers of our elected representatives. Staffers were taking meetings even though the House was not in session and the federal government was/is closed.

There were four “asks” that we made. I had fantastic interactions and felt like I was heard. I’ll share here what those asks were – if you feel compelled to share with friends/family or to reach out to your own elected representatives that would mean a lot.

Did you know that if you have MBC and need to stop working there is 5-month waiting period for Social Security Disability Insurance (SSDI) benefits to start? In addition, after that there is a 24-month waiting period before you are eligible for Medicare! I am one of the fortunate people who is living longer with my MBC diagnosis and can still work. Women with different subtypes have a prognosis of 2-3 years. During this time they can’t work and can’t get SSDI or Medicare. House bill 2048 “Metastatic Breast Cancer Access to Care Act” would eliminate the waiting period.
Did you know that where you live impacts how private insurance pays for MBC drugs? Private insurance treats medication received at a cancer center different from medication taken at home. Recall that I was on a pill (Ibrance) for the first 4 years. I live in a state where private insurance is required to pay for this (chemo) regardless of how it is given: intravenous or a pill. House bill 4101 (Cancer Drug Parity Act) would require private insurance to cover oral cancer drugs the same as IV drugs, regardless of what state you live in.
The U.S. is the largest funder in the world of cancer research. The administration’s budget zeroed out some breast cancer research programs and greatly reduced funding for the National Institutes of Health (NIH). Fortunately, Congress likes science – we asked them to provide the NIH with the same funding as last year and restore the breast cancer program in the Dept. of Defense.
Did you know there is a national database of incidence of cancer? It was created in the ‘70s during the Nixon administration. Unfortunately, it has not been updated since then. The Surveillance, Epidemiology and End Results (SEER) database provides information on cancer statistics which is used to inform where research dollars should go. It needs to be updated badly and I asked our reps to support funding for it. SEER help us understand where there is a high burden of cancer. It turns out that not every state is contributing to it. In addition, it does not include any recurrence of cancer. When I was first diagnosed, my information was put into SEER (LCIS and stage 0 DCIS breast cancer). However, there is no mechanism to update my information! According to SEER I was treated in 2009 and all is good with me. As you can see, the number of people with MBC or with any recurrent cancer are not counted which means we have no idea who is living with metastatic disease (unless you were diagnosed with MBC right away, which is only 6% of all MBC diagnoses).

That was a lot! If you are still reading, thank you. If you’d like more information about anything including language to send to your elected representatives, shoot me an email (charlevo@gmail.com).

I have one other cancer event this week and then I will take a break from cancer the rest of this month. I hope you are keeping balance in your life as well.

Onward!

1. Donate to research for MBC via METAvivor.

2. Find your Congressional representatives: House & Senate

Busy September capped by radiation ☢️

October 11, 2025

September was a busy month for me in managing cancer.

Back in June I had a brain MRI, which includes the very top of your spine (cervical). At that time, it looked like there might be an active tumor in part of my C1 vertebrae. I also had a full body PET scan that showed “stable” cancer at the time (mainly my spine has been problematic).

The stable PET scan means that my treatment (Enhertu) is largely working. However, the tumor on my C1 made me nervous. Your C1 is directly at the back of your head at the height of your nose. If anything goes wrong there it can be complicated and in the words of my oncologist “catastrophic” 😳

After discussing with my oncologist in August, we decided to radiate it. It’s not uncommon with metastatic breast cancer (MBC) to consider radiating smaller tumors if everything else is stable or no evidence of disease (NED).

So, I decided to pack this in to September which was already busy.

After another MRI of my cervical spine I met with a radiation oncologist. He wanted to do Stereotactic external Beam Radiation Therapy (SBRT) – a concentrated radiation that would have been 2 sessions.

My insurance company disagreed with my radiation oncologist and wouldn’t cover it.

I could appeal it but that can take weeks and I didn’t want to give the tumor more time to get comfy and grow. So instead, I had to go for 10 sessions over two weeks.

You have to lay perfectly still for radiation so that the beam hits the intended target. At my planning session appointment they created a mask. A mesh of warm plastic was placed over my face and head and molded to my exact shape. The photo of the mask shows me with a big smile – not that I’m super happy to be doing this, I just naturally smile for photos.

A spanking new mold of my face and head.

Then I got out of town. Drove Maddy to Cal Poly and then back home. The next day I jumped on a plane to Providence for work. Glen flew out at the end of the week and we spent the weekend (our first as official “empty nesters”) with my cousin playing tourist.

Beautiful fall weather made a boat tour of light houses on Naragassent Bay just delightful!

We got home late on a Sunday and Monday morning at 9am I had my first radiation treatment.

The photo shows me right after they finished a treatment. The mask mostly feels like a heavy blanket with a lot of holes draped over your head.

The mask is literally snapped to the table. You can’t move your head at all. You can kind of see through the holes and of course you can breathe. The round equipment above my head rotated all the way around the table that I’m lying on.

I had 10 treatments (M-F) over two weeks. Within those 2 weeks I also had my Enhertu infusion and got my flu and COVID boosters.

As soon as I finished radiation I headed back to the east coast, Washington DC this time to advocate on the Hill for funding for cancer research.

It’s been a lot, however, I refuse to let cancer dictate my life. Most of those days I was in bed before 9pm. I’m grateful that my side effects are minimal and I can still do “all the things”.

The side effects of radiation to your head are not pleasant. This week I developed a wicked sore throat to the point that I couldn’t swallow. Food doesn’t taste like anything. My fatigue has been ridiculous.

October is a little more quiet but more travel for work and fun.

I hope you all are living your best life and doing the things that make you happy and matter to you, whatever that might be.

Onward!

Our last family dinner before Maddy left for college.

The First 6 Years 😍

July 30, 2025

This month marks my living with metastatic breast cancer for 6 years.

Six years with a terminal illness.

I’ve been reflecting a lot this month both on this unwanted journey and life overall. I’ve had the privilege of:

2,190 days including sunrises and sunsets
312 weeks
72 months
6 years

And that included:

1 Hospitalization
2 Support groups I created
4 Lines of treatment
6 Cancer related surgeries
7 Cancer related conferences attended
50+ Scans of my body or parts thereof
106 Blog posts
150+ Doctor appointments
170+ People connected with in support groups I started

That is a lot of cancering! There have been highs and some very low points. Fortunately, my cancer only got somewhat out of control once. For the most part I’ve been fortunate to tolerate medications well, have minimal side effects, and be surrounded by an amazing medical team and an incredible new group of friends I’ve met because of cancer.

As you all know, cancer is but one part of my life, even though this blog is cancer-focused. I’m proud of all I’ve accomplished over the last 6 years. The big moments and the small ones too. Every moment adds up to life. It wasn’t always easy, but who ever said life was easy?

Some highlights:

1 Global pandemic
2 Countries visited
4 Graduations attended
5 Colorado weekend getaways
6 Nutcracker ballet performances attended
13 States visited
30+ Visitors here to Colorado
34 Trips in the U.S.
? Meals out with friends = too many to count

I will never say that cancer is a gift.

Cancer also did not change the way I live my life and how I prioritize. I was already doing that just fine thank you!

It has pushed out opportunity to do some things and so the choices I make on how to spend time is especially important.

I hope you reflect on your last 6 years and find it filled with amazing experiences, wonderful people, and quiet moments.

Onward to the next 6 years!

A few photos from the first 6 years of living with MBC –

Quick March Update ☘️

March 18, 2025

Wow, I realized it’s been a hot minute (actually 2 months) since I shared an update on my health. You can assume that no news is good news!

I’ve been busy life-ing. I’ve been focused on improving my movement. I haven’t used a cane since October. I’m up to walking an hour at a time up to 3mph. I have started some weight training at home, basically trying to get back into shape.

All this to say, I’m feeling fine. I still have continual pain medication and other meds to deal with side effects. Other than some fatigue I’ve been feeling pretty good.

I’m still getting IV chemo (Enhertu) every three weeks. I’ve been on this medication since February 1 of last year. I’ve been grateful to have tolerated it so well.

There are hints though that it might not be working so well any longer. My scans in December were “fuzzy” and I just had another PET scan this morning so I will learn soon if the cancer is quiet or progressing. My bloodwork tumor markers have been rising pretty steadily (bad) so that is a concern.

I next see my oncologist at the end of this month and we will determine then if I need to change meds or not. As you all know, it’s best to change the medication if it is not keeping the cancer quiet. There are a finite number of medications though so the goal is to stay on each one as long as possible.

Our family is headed out on a little holiday later this week to celebrate life. Life is short! Go do “all the things” – even if it doesn’t seem like the best timing.

Onward!