December 26, 2025 – I hope you are all enjoying the holidays and they are evolving exactly as you need them to.
This has been a busy month for cancer and overall quite good.
Two infusions of Enhertu this month, both uneventful.
An echocardiogram that was unchanged from 4 months ago.
A PET scan that is considered “stable”. I have many cancer lesions in my bones and most were healing, a few got worse.
The radiation on my C1 vertebrae in September appears to have worked. It was much less active on my PET scan.
All the cancer-stuff finished before the holidays so I was able to travel to family and friends.
Overall I’m feeling fine. I had a lot of travel in December and with pacing myself I was able to have successful trips.
I will continue on the same medication until at least March when I’ll get another PET scan to see how things are. In the meantime I plan to make the most of what is left of 2025 and start 2026 with gratitude, enthusiasm, and big plans! I don’t know what exactly those plans are but I’m going to try to do “all the things”.
I hope you are able to embrace the new year and all it might bring. Happy Holidays.
Thanks to Amy and Josh we were able to enjoy the Bronco-Packer game. Yes, those are Packer earrings!
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.
Staffer from Rep. Joe Neguse’s office.Staffer from Senator Bennet’s office.
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.
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.Saying “see you later” to MaddyTouring in Rhode Island – this is the homestead of the painter who did the portrait of George Washington that was the inspiration for the $1 bill
It’s been a bit so a short update here. Short version: currently stable, minus a pesky tumor in my C1.
I had a PET scan earlier this month. I met with my oncologist today and the imaging didn’t show any change. I’ve been feeling pretty well lately so that is a good sign. My tumor markers keep climbing which is worrisome but there is no evidence prompting a change in medication since my imaging doesn’t show anything. I’ll continue on Enhertu for the next 3 months.
I do have a tumor in my C1 and compared to June it’s a bit more active. It’s possible that this is the reason for the rising tumor markers – it’s hard to say. I’m having radiation on the C1 (started today). More on that later.
Overall, I’m trying to stay active and have balance in my life. I think that’s hard for all of us, cancer is just one more thing to navigate.
We are officially in fall – hopefully you had a great summer and fall is off to a good start.
Onward!
Grateful for walking paths from the cancer center. I took a walk before my appointment today.
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 –
Winter walksFirst concert at Red RocksHoliday family photoFlorida family visitorsWedding anniversaryGo Pack Go!Best FriendsChristmasGo Buffs!Evelyn graduationMaddy graduationFamily in the mountains55-5 partyEast coast familyHawaiiMy heartSunset walksInfusion room
Happy summer my friends. In Colorado we are starting off with a cool, wet one which is great for the a/c bill but less ideal for exploring outside.
Lot’s going on here including medically.
I had some work travel last month and towards the end I started not feeling well, including being light headed. I mentioned this to my oncology nurse 2 days ago during my treatment appointments and she scheduled a brain MRI and echocardiogram. Yes, light headedness triggers the immediate thought of brain metastasis.
Recall from my last post that we’ve found the MRI to be the best imaging for me. The brain MRI captures the head and top part of the spine (cervical). Mixed results: no brain metastasis 🙌 but it did pick up a new lesion on my C1 vertebrae 👎.
The nerves that come out of the C1 impact the sides of your face and head as shown in this nifty diagram (one of my fav diagrams BTW).
The most likely explanation for my light headedness is that the lesion (tumor) is pressing on the nerves. So, my oncologist has ordered another PET/CT to check again. It seems a little insane to keep getting imaging that doesn’t work so well – I guess he wants to confirm or look for other lesions.
My tumor markers did drop the end of last month which is in contradiction to the new tumor.
See how complicated and tricky cancer is?
For now, I’ll get the PET/CT and an echocardiogram and keep doing all the things (eating healthy, moving, relaxing) and we shall see where this takes me.
After my work trip I spent 2 days in Chicago at the American Society for Clinical Oncology (ASCO) where I learned about new treatment lines coming out and connecting with other patient advocates.
The cancer research going on now will result in the drugs being used in the coming years. This is why it is so important to preserve funding for the National Institutes of Health. The presidents budget slashes funding by almost 50%. That means many fewer clinical trials and many fewer drugs in 5 years. No one expects to get cancer. If you get cancer in 5 years you will be wishing the NIH had done more research to help you. Please call your elected federal reps and push for restoring funding to NIH.
On a lighter note – Maddy graduated from high school, Evelyn started a research internship at University Colorado Anschutz Medical Campus and we all head to Las Vegas at the end of the month to support Maddy in her last National Dance Competition.
Onward!
Amir humored me with a selfie in front of the MRI machineMaddy’s pre-professional companyThe ASCO meeting was huge with 50,000 attendeesGrateful Nancy could come for the graduationMy 2 favorite future engineers.
It’s been an interesting week, regardless of who you are and what you support. I’m writing because one of the Executive Orders this week puts a freeze on communications from many Federal agencies including Health and Human Services (HHS) and the National Institute of Health (NIH).
This is a serious situation as it is already putting cancer research at risk. I work closely with a breast cancer researcher at the University of Colorado (Dr. Matt Sikora) who conducts basic research through grants from NIH. Based on communications he received, it looks like his research lab may lose funding. This funding supports the basic cancer research that leads to new treatments. We all know how I feel about new treatments!
Well, that is a lot. What can I do as one individual?
I ask that you take 10-15 minutes to send an email to your elected members of Congress (you have 2 state Senators and 1 Representative). Believe it or not, staffers count the number of communications they get from constituents on a particular topic. While you might get a form letter response, don’t get discouraged. They will count your email! It will make a difference.
To help you, Dr. Sikora has drafted a sample email and provided links to find contact info for your elected reps as well as a link to where you can find the economic impact of cancer research in your state.
I’m happy to help anyone if you need it. Thanks for your consideration. Cancer has long been a non-partisan issue and should stay that way.
Onward!
Sample email text (you need to change things in bold)
Dear [congressperson]:
I am writing due to grave concerns with the freezing of communications at Federal agencies. Specifically, I am writing regarding HHS and the National Institutes of Health, including the indefinite suspension of council review meetings, review study sections, and travel. Suspension of these meetings and review sections jeopardizes biomedical research funding nationwide.
Currently, our state of Colorado receives nearly $600 million in funding for biomedical research from NIH, supporting over 7,000 highly skilled jobs and driving over $1.5 billion in economic activity. As a concerned constituent living in [Denver], and as a [patient living with cancer/research advocate/caregiver/etc], I urge you to make sure that money that has been allocated for NIH extramural funding, including all training and workforce development grants, remains committed. Loss of this funding would be disastrous for our local economy, and would drive major job loss including in highly trained university biomedical research personnel, including graduate students and postdoctoral trainees that make up the next generation of biomedical researchers.
NIH has always benefitted from robust bipartisan support, and I urge you to continue to commit Federal support to the NIH mission and extramural program, which ensures that our nation remains at the forefront of biomedical research innovations and advances in patient care.
Life As I Know It 