New Treatment Plan ๐Ÿ’Š

March 29, 2026

Hello again. A quick update on where I’ve landed with treatment.

Over the next 2 weeks I’ll start what I consider my 5th line of treatment. If you are interested I’m tracking my treatments on the My Story link of this website/blog.

I say 5th because I’m not really counting the clinical trial I was on. It was a blind trial so you don’t know if you are in the treatment or control group. After the fact I learned I was in the control group so I was really getting the same treatment as before the trial. Anyway, it’s not always straightforward to track treatments.

Speaking of clinical trials – I was hoping to get in to a Phase 2 trial with a โ€œnewโ€ drug. Phase 2 trials have limited participation and the focus is to figure out the right dosing. The trial had a wait list of 10 women and the wait list was โ€œnot movingโ€. Sigh. A disappointment.

I’ve decided to try another drug similar to one that I was on before (from the same “class” of drugs). My oncologist says that in his experience he’s not seen great results from doing this. However, I’m seeing more people with MBC (metastatic breast cancer) who are doing this, some with good success.

So, he agreed that we will try it and closely monitor things through bloodwork and how I’m feeling. I’ll have another scan in early June to see if it’s stopped the progression.

I’m going to take Verzenio (Abemaciclib) with Tamoxifen. Fortunately for me, when I had early stage breast cancer I didn’t take any medications. This means they are all an option for me now (#silverlining). Many women with early stage breast cancer take Tamoxifen for 5 or 10 years as a way to prevent the cancer from returning.

Verzenio is a CDK 4/6 inhibitor (and has to be taken with something to knock down estrogen – the Tamoxifen in this case). When I was diagnosed in 2019 the “preferred” CDK 4/6 inhibitor was Ibrance. Since that time, research studies have shown that Verzenio is actually a bit superior. My oncologist told me that if I were diagnosed today heโ€™s put me on Verzenio.

So, we will give this a try. They are both oral medications (nice, I don’t have to go to the cancer center). Verzenio is known to cause GI issues, in some cases severe. I have tolerated most of the drugs really well and am hoping this is the case again.

Am I nervous? Yes.

Anxious? You bet.

Optimistic? Absolutely!

In the meantime, life continues! Maddy and I just got back from a week in Rome. Evelyn and I are planning a trip to Europe in May. Hopefully I’ll be well enough for Glen and I to do a trip in early fall. I’m going absolutely nowhere in April and will be hitting the trails to walk and soak up the beautiful Colorado views! Come visit, I could use walking partners!

Onward!

๐ŸŒทStepping into Spring and Uncertainty

March 14, 2026

Happy spring! Itโ€™s been crazy warm here with basically no snow this winter. Itโ€™s made it a bit easier to get outside but also worrisome.

Christmas in March – Glen and the girls got me a stained glass making class for Christmas. You can see how beautiful the weather looks!

One thing I try not worry about is this damn cancer. There is a lot about my situation that is out of my control. Sometimes itโ€™s hard not to worry and in those cases I only give my self a set amount of time and then I put the worry away.

Itโ€™s been a wild three months.

๐ŸŒท Radiation to my C1 last fall looks like it was successful in stopping that cancer lesion.

๐ŸŒท I was taking a walk in January and my hip/femur (greater trochanter) fractured. It was minor and no longer hurts. Still, walking may = fracture.

๐ŸŒท This week I had 5 doses of radiation on that fracture to try to knock down the cancer and reduce any further fracture.

๐ŸŒท This week I had a total of 8 medical appointments (5 radiation, a PET scan, an oncology visit, and an echocardiogram).

๐ŸŒท PET scan results were not great. Looks like the cancer has gotten a bit more active. Looking at changing treatments.

As youโ€™ve probably learned from me by now, there are a finite number of treatments. Once those run out there is nothing to stop the cancer.

How many treatment lines are there? It varies for each person depending on your cancer subtype. Exact number is unclear (but not a huge number, maybe 6-10ish?). The positive side is that research and clinical trials are making more drugs available all the time. The drug Iโ€™ve been on for the past 2 years was not an option for me when I was diagnosed! I just need more drugs to become available and approved!

I donโ€™t know what Iโ€™ll do for my next reatment line. We are looking at a clinical trials.

Please, please, talk to your fiends, family and neighbors about how important it is for the federal government to pass budgets on time and to fund cancer research! I know several promising trials that have stopped because of all the nonsense going on with the budget and NIH. Itโ€™s not partisan, itโ€™s life or death for some of us.

All of this being said, Iโ€™m optimistic that Iโ€™ll find a good next treatment and hope that the side effects will be minimal and it will be very effective.

In the meantime Iโ€™m doing all the things! So far this year Iโ€™ve taken ballet classes, a sketching class, Spanish lessons, signed up to work with a personal trainer and am looking into learning to knit. I have a few trips planned with the girls and will enjoy every single day.

Wishing you all a fantastic rest of March. Iโ€™ll share more when I know it.

Gratitude for 2025

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 โ€œstableโ€. 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 Iโ€™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 Iโ€™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 donโ€™t know what exactly those plans are but Iโ€™m going to try to do โ€œall the thingsโ€.

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!

Busy September capped by radiation โ˜ข๏ธ

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 โ€œstableโ€ 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 โ€œcatastrophicโ€ ๐Ÿ˜ณ

After discussing with my oncologist in August, we decided to radiate it. Itโ€™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 wouldnโ€™t cover it.

I could appeal it but that can take weeks and I didnโ€™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 Iโ€™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 โ€œempty nestersโ€) 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 canโ€™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 Iโ€™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.

Itโ€™s been a lot, however, I refuse to let cancer dictate my life. Most of those days I was in bed before 9pm. Iโ€™m grateful that my side effects are minimal and I can still do โ€œall the thingsโ€.

The side effects of radiation to your head are not pleasant. This week I developed a wicked sore throat to the point that I couldnโ€™t swallow. Food doesnโ€™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!

September update

September 22, 2025

Itโ€™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 didnโ€™t show any change. Iโ€™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 doesnโ€™t show anything. Iโ€™ll continue on Enhertu for the next 3 months.

I do have a tumor in my C1 and compared to June itโ€™s a bit more active. Itโ€™s possible that this is the reason for the rising tumor markers – itโ€™s hard to say. Iโ€™m having radiation on the C1 (started today). More on that later.

Overall, Iโ€™m trying to stay active and have balance in my life. I think thatโ€™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.

The First 6 Years ๐Ÿ˜

July 30, 2025

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

Six years with a terminal illness.

Iโ€™ve been reflecting a lot this month both on this unwanted journey and life overall. Iโ€™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 Iโ€™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 Iโ€™ve met because of cancer.

As you all know, cancer is but one part of my life, even though this blog is cancer-focused. Iโ€™m proud of all Iโ€™ve accomplished over the last 6 years. The big moments and the small ones too. Every moment adds up to life. It wasnโ€™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 –

Itโ€™s Summer & Iโ€™m Feelinโ€™ Fine โ˜€๏ธ

July 13, 2025

Hi all – it occurred to me I havenโ€™t shared an update in a while so here we go. 

Itโ€™s been a busy spring and summer. Maddy graduated in May and had dance commitments through June (sheโ€™s actually still dancing in July. Evelyn finished her junior year and started a summer research internship at University of Colorado Anschutz Medical Campus (studying lobular breast cancer). Both the girls are studying engineering in college.

Iโ€™ve been trying to keep up with it all. In May I started doing Pilates regularly in addition to my daily walking. So far itโ€™s been helpful with gaining back some strength, especially in my core. 

Overall, Iโ€™ve been feeling quite good. I have some pain occasionally between my shoulder blades in my thoracic spine but that could be how I sit at my computer, or the Pilates, or the cancer, or something else. Itโ€™s manageable and isnโ€™t persistent so I donโ€™t give it much more thought. 

I was having some vertigo on and off in May and so an MRI of my brain was ordered. (Thatโ€™s the thing about metastatic cancer, any small thing could be something big – or not.) Fortunately the brain MRI came back clear – yay! (Note: previously I thought that there was new progression on my C1, however, my oncologist confirmed itโ€™s not new, itโ€™s been there or quite some time. This is good!)

I was due for my 3-month PET scan and had that in mid-June. (Read more about PET scans here and how they are used to monitor my disease.) 

The results of the PET scans were mixed. Some of the lesions in my spine showed healing, others showed active cancer. 

So, what do we do with that? 

Since Iโ€™ve been feeling fine and I have a very good quality of life on Enhertu, we stay the course. Iโ€™ll continue taking Enhertu until we get solid evidence of significant progression. 

My (very reliable) blood work tumor marker numbers are climbing high. For now we will just keep an eye on things since itโ€™s not clear the cancer is significantly active.

Itโ€™s counterintuitive that the treatment is working in some areas and not in others. Youโ€™d think it would be one or the other – but that is what makes metastatic breast cancer treatment a bit of an art. The oncologist has to weigh all these different factors and decide what the smartest path forward is. 

My plans for the rest of the summer (besides work) will mainly be going for walks, doing Pilates, water color, some crocheting, maybe some gardening and trying to connect with friends for lunch. 

I hope you are soaking up all the hours of daylight we have this season and are living the hell out of life!

Onward!

All About PETs ๐Ÿฑ

No, this is not all about Toulouse, but it could be! Heโ€™s such a good little furry guy!

Toulouse โค๏ธ

In case you are interested, Iโ€™m summarizing how a PET scan can help us monitor metastatic breast cancer. If you are not in a science-y mood, you might want to pass on this post.

A PET (Positron Emission Tomography) scan is often used to detect cancer. It is also commonly used to diagnose heart disease and brain conditions. With cancer it is used to determine if the cancer has spread to other parts of the body (metastasized). [Tomography = a technique for displaying a representation of a cross section through a human body or other solid object.]

A PET scan detects cellular changes in organs and tissues earlier than CT and MRI scans. The scan is painless, although sometimes people can feel claustrophobic as their head moves through the large tube. The machine used to do the scan is shown in this diagram from the Cleveland Clinic.

Machine used for PET (and CT) scans (image from Cleveland Clinic).

Prior to the scan, an injection of a glucose-based radiotracer is given. A person has to wait about 45 minutes after the injection before the scan is started. This gives the radiotracer time to circulate through the blood stream and body. 

A PET scan can take 30 minutes to 2 hours depending on what exactly is being examined. The radioactive tracer allows the machine to detect diseased cells. Diseased cells will uptake (or collect) more of the glucose radioactive tracer because they are more metabolically active than healthy cells. This increased uptake is visualized as brighter spots on the imaging.

The most common radiotracer used in PET scans is fluorodeoxyglucose (FDG).  Once itโ€™s inside the cell, itโ€™s trapped. The PET scan machine can quantify the amount of tracer uptake using SUV. SUV (Standard Uptake Value) is a quantitative measure used to assess the concentration of the tracer. 

SUV represents the ratio of the amount of radioactive tracer in a specific region of interest (like a tumor) to the amount of tracer that would be expected in a similar volume of normal tissue, taking into account the injected dose and patient’s weight. 

Changes in the SUV number over time can help determine how well a patient is responding to cancer treatment. 

In an imaging report, SUV numbers are reported. The radiologist or oncologist can then compare the SUV numbers to previous PET scans to determine if the cancer is more active (higher SUV number) or less active or inactive (lower SUV number). 

While all of this sounds very concrete and specific, itโ€™s still just an approximation of what is happening in the body. Results from a PET scan are used along with other factors such as how an individual is feeling, whether or not there is pain present, and blood work results. 

PET-CT

Sometimes a PET scan is done in conjunction with a CT scan. The same machine does both of them and a patient would have both done during the single scanning session. The combination of both a PET and CT scan produces a three-dimensional image that allows for a more accurate diagnosis. 

A CT scan is Computed Tomography and uses x-rays to get a detailed view inside the body. It produces still images of organs and body structures (such as bones). Sometimes itโ€™s referred to as a CAT scan – itโ€™s the same thing. CAT = Computed Axial Tomography.

Instead of creating a flat, 2D image, a CT scan takes dozens to hundreds of images of your body. To get these images, a CT machine takes X-ray pictures as it revolves around you.

After a scan is completed, the technician makes sure the images look ok and then it is sent to a radiologist to interpret and read. The radiologist writes a report of what they see, ideally comparing it to previous PET or PET-CT scans. That report is then forwarded to the oncologist and the patient. The oncologist and patient, together, determine what changes to make to treatment (or not) based on the scan results as well as other factors such as how the patient is feeling and blood work.

Summer, Scans & Science

June 4, 2025

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.

Lotโ€™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 weโ€™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 ๐Ÿ™Œ but it did pick up a new lesion on my C1 vertebrae ๐Ÿ‘Ž.

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 doesnโ€™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, Iโ€™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!

How Long to Ride this Treatment Train? ๐Ÿš‚

April 6, 2025

Hi friends and family – I hope spring has sprung in your area and you’ve been able to enjoy some time outside!

I write to share the latest status of my life with MBC and treatment. On March 31 I had treatment #20 of Enhertu! Yippee! Enhertu is an anti-body drug conjugate (ADC) given intravenously every three weeks. I do not have a port for it. On days I receive treatment I’m at the cancer center anywhere from 3-5 hours.

My oncologist considers three things when determining if we stay on the current treatment or change.

  1. How do I feel?
  2. What does imaging show?
  3. What are my tumor markers (blood work) showing?

Fortunately, I feel quite good. I am still working FT. I’m walking daily. I’m doing all the things I want to do. So, all good here.

Imaging. Earlier in March I had a PET scan to see if the cancer is active. The imaging report stated that there was increased activity in several areas of my spine. My scan in December also showed a small increase in activity. So, not the best result.

Tumor Markers. My tumor markers (CA 27-29) have been steadily rising, not great. Ideally we want the number to be under 40. As you can see from the chart here, they are above that and trending upward.

Screenshot

So, what to do? 2 out of the 3 indicators are pointing to progression. My oncologist gave me the option to change medication now or stay on Enhertu. He said it is the “devil you know vs. the devil you don’t know.” After some discussion we agreed that if my tumor marker got into the 350-range we’d change meds.

Keep in mind that when we had that conversation I didn’t have my most recent tumor marker number. Clearly, it has jumped a lot in the past 3 weeks.

So, what next?

As long as I’m still feeling fine I will have my next appointments and treatment on April 12. However, it remains to be seen if I’ll have Enhertu or the next medication we have lined up (also IV chemo).

As you know, there are limited treatment options so we aim to stay on them as long as possible. On the other hand, we don’t want to stay on a treatment that is not working. We want to find something new that will quiet the cancer.

I leave you with a few photos from some recent travels. More soon.

Onward!