Update – Page 6 – Life As I Know It

Steady Betty – September 30, 2021

Here we are, well in to fall and about to embark on pink-tober. (More on that later.)

I had my monthly check up last week. No change in medications or blood work (well, blood work looked a little better than normal). When I shared this with my sisters one of them referred to me as Steady Betty. I’ll take it.

I’ve been feeling quite good the past few weeks. Interestingly – and frustratingly – how I feel has no correlation to the status of my cancer. Regardless, I’m grateful the the medication I am on is not causing significant side effects.

Life of late looks pretty normal – school back in session, still working remotely, making sure M gets to dance, E balancing the fun of being a senior with working on college applications. Glen waiting a bit in the morning for the temperature to rise a little before he heads out for a run.

Evelyn is not playing volleyball this fall; she did take on the task of coordinating the Dig Pink! fundraiser for the volleyball program. She organized and promoted the event and raised money that will go toward breast cancer research and local support. She did a great job! ❤️

Evelyn at Centaurus High School, coordinating the Dig Pink! fundraiser for the volleyball program. They raised over $500!

Next month I will have scans (bone scan and CT scan with contrast) that will determine if the cancer is stable or growing.

Until then, be well my friends and family.

Glen and I headed up to the foothills in search of a little fall color.

Details: The blood work used to monitor me monthly is the CA 27-29 tumor marker. No evidence of metastatic breast cancer (MBC) is a value of 38 or lower. My tumor marker number has been rising for months with a big jump this past summer. My oncologist was ready to switch me to my second line of treatment when it stopped rising. The value in September was the same as August. The higher the number the more likely there are cancer cells circulating around in the body. The CT scan in June looked clear. The bone scan in June suggested maybe mild progression. So, no clear evidence of what is going on.

This means I just keep taking the same medication as before. I just got a delivery of Ibrance – the one doing the heavy lift in stopping progression. This photo shows you what $36,000 in medication looks like. Each box is a 28 day supply. (I have 3 other meds in addition to this one.)

August Update (2021)

August 28, 2021

Hi Friends and Family –

Summer is winding down and things almost feel normal – school is back in session, Glen is on his annual fly fishing trip. I say almost normal because I’m not sure what normal is exactly anymore. I’m guessing many of you feel similarly.

Short version: I shared last month that the radiologist though from the scan images that I may have mild progression. If there is progression, that means the medication is not working and the cancer is growing. Typically that means you move to a new set of medication.

We waited for another month of blood work before making any decisions. Once you leave a line of treatment you cannot go back; you want to stay on a line of treatment for as long as possible.

Last month my blood work looked “ok” so that meant no changes. This month it’s “ok but not great”. I will stay on the same medication though and have scans again in a month or two.

Our normal now includes the stress and anxiety of never knowing if I’m stable or will be searching for a new effective treatment. Not ideal, but better than not having treatment options. So, we march on into fall.

I hope you are all safe, healthy and vaccinated. Please, please get vaccinated if not for yourself for me and others like me – those who are on life saving medication. If we get COVID we may have to stop taking the other medication while recovering. What a terrible choice to have to make.

Miss seeing many of you. Wishing you all a grand end to summer and that our paths can cross – in person – soon.

-Donna

Long version: The CA 27-29 tumor marker is blood work test that gives an indication of the spread of breast cancer. The lower the number the better. Mine dropped immediately after starting my treatment in summer 2019. In February 2020 it was close to “normal” and then has been slowly rising ever since, with a big jump in June – at the same time I had scans.

The increase in the CA 27-29 coupled with the imaging results made my oncologist start thinking about a second line of treatment. There is an opportunity to consider a clinical research trial when you change treatments. These trials are how they test new drugs and they are critical for getting drugs eventually approved. Think COVID vaccine here – before it was approved it went through multiple phases of testing via clinical research trials.

There was the possibility of my participating in a clinical trial as part of my next line of treatment. I met with the clinical trial nurse, got info on the treatment, Glen and I researched it and I also had some blood drawn to see if I would be eligible. From what we could tell, it looked promising. I could only participate if I had a particular mutation. Spoiler alert – I do not have that mutation. So, this trial is not an option for me. If I need to change my treatment we’ll have to go with the “standard of care” or see if there is another trial I might be eligible for.

So, I’m back to just waiting for my next set of scans to see where things are at.

February 4, 2021

Dear Friends and Family –

A few years ago Evelyn did a project for school where she made a calendar. Each day of the calendar was a different “national” day. National donut day (June 4), national chocolate day (November 11), my personal favorite – national wine day (May 25). I’m writing this on February 4, World Cancer Day. Not even national cancer day – WORLD cancer day. Who knew this existed? Not me. Now you do. Take this opportunity to enlighten others about cancer, donate to cancer research (if you have the means), or reach out to someone you know impacted by cancer. (Sadly the list for that last one is probably substantial).

Today I had my monthly treatment and medical visits. These are every 28 days (Thursday afternoons) and fortunately are relatively short and usually pain free. I typically wait to write until I get all my blood work back, which takes up to 72 hours. It seemed fitting to write today though.

I’m still taking the same medication and on the same treatment plan as when I was diagnosed in July 2019. Earlier this week I started cycle 21 of my medication. (We count the time I’m on this medication by the 28-day cycle of the meds.) I’m still taking Ibrance (you’ve probably seen commercials for it on television) and Anastrozole. Those are oral meds and I take them daily. Today I received a shot of Lupron and an infusion of Zometa. I have very few side effects from the medication. My treatment today was pretty uneventful, which is always good.

Lately I’ve been feeling fine. Some days I feel great! That’s the thing about Stage 4 cancer that is weird. I don’t physically feel bad. I’m not incapacitated. I worked this morning. I styled my hair today – I still have hair. I thought about how I didn’t want to exercise and did it anyway. Probably pretty similar to your day in many ways.

I’ll stay on this medication until it no longer keeps the cancer at bay. When will that happen? No one knows. Will I know when it is happening – will I feel it? Might feel exactly like I do right now, I might have some terrible pain, no one can say. How will we know if the medication has stopped working? When my scans show new cancer.

Speaking of which, I’m up again for scans – will have them just before my March appointment. I get them every 3 months. It feels a little bit like the movie Groundhog Day. A lot of repetition. I’m ok with that. In fact, I am grateful for it. It means nothing has changed and that’s the best we can hope for.

I hope those of you on the front lines of health care or enjoying your later years have received a vaccine or will get one soon. Until we all are vaccinated, Mask Up, social distance and stay safe.

Be well.