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Steady Betty Bones – October 25, 2021

It’s scan time again. Every three months I get two scans: bone scan to check what the cancer is doing in my bones (hopefully nothing), a CT scan to see if the soft tissue / internal organs are clear of cancer.

My bone scan this month was the same as June. So, the possible progression identified in June did not continue – if in fact that is what was happening. Confusing – yes…. I’m “stable” with regard to my bones.

I was supposed to have a CT scan the same day – I had to reschedule to later this week. I’ll get the results maybe Friday, probably next week.

The craziness of our corporate health care system was evident to me this month. (Ok, it’s usually evident, but this was a big example.)

The CT machine at the Cancer Center where I usually get my CT scan is not available. I asked if I could get my CT scan across the parking lot at the hospital where I get my bone scans. My Dr. office said yes. My insurance company said no. Well, they said yes but I’d have to pay for it.

It turns out that the EXACT SAME SCAN is covered by insurance if it is at an “independent facility” but not at a hospital. It is considered a hospital service and that is not covered. 🤦‍♀️

So, I had to identify a new location, call insurance to get it authorized and now I will need to drive to Denver to get the scan. I’m physically able to do this but geez, this is not the kind of run around you want to give someone who is just trying to get through the daily mental gymnastics of having a terminal disease.

I’ll probably post again after I get those results.

This has been an extraordinary month – it’s “Pink-tober” (breast cancer awareness month) which has been super hard this year, some family challenges, and my parents/dad are having health hiccups which precipitated a quick visit to WI. Overall, I’m actually grateful that I can navigate this with success. The silver lining is that my trip to the Midwest was originally to see a dear friend get some well earned recognition and she asked me to introduce her. What a privilege.

Until next week. Keep those fingers crossed the cancer is “behaving”.

❤️

…it’s been an amazing display of fall color here and I’ve been soaking it all in with as many outdoor walks as possible.

Beautiful fall weather – snuck in a walk while Maddy was shopping at the mall. I know – how amazing is it that I live in a place where this is available next to the mall?!?

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.

July 29, 2021 Update

Hi everyone –

I hope you are all healthy and enjoying summer! We are all fully vaccinated and it seems as if time is passing even faster than before.

I write with a brief update here. I’ll be writing again soon with links to more information.

I had scans at the end of June. It is looking like (stable) Mable is a fickle friend. The radiologist indicated “mild progression” on my bone scan (although interpretation is a bit of an art form). My CT scan was clear so there is no cancer apparent in any internal organs. It remains only in my bones as far as we can tell.

My tumor marker in my bloodwork jumped a lot last month. The combination of the big increase in tumor marker coupled with my messy bone scan means that there is likely progression. I am exploring with the oncologist what the next line of treatment would be. I am waiting on new tumor marker blood work results from my appointment earlier this week. If the values jump again, we will move to a second “line of treatment”. If the blood work numbers stay the same or drop, we stay the course.

A “line of treatment” is basically the set of medications taken to keep the cancer from progressing and growing. We know that at some point all medication stops working. The goal is to stay on each line of treatment for as long as possible. There are a finite number of treatment lines.

I have a lot to be grateful for. I celebrated another birthday at the end of June and in August Glen and I will celebrate our 20th wedding anniversary. We spent time this summer as a family in Las Vegas, Steamboat Springs and New England.

I hope you will celebrate all the milestones in your life, even if they don’t seem particularly big. Soak up every day. More soon.

Much love,

April 30, 2021 Update

Dear Friends and Family,

Time marches on. I hope you all have gotten your COVID vaccine, or have a plan to get one. Even if you don’t think you are at risk, by getting the vaccine it will reduce the ability for variants to form, thereby protecting everyone.

I’ve had two regular visits to the cancer center since I last wrote. All status quo which is wonderful.

I don’t have much to share in the way of an update on my cancer situation so I’ll wish you all a happy spring.

March 4, 2021

It’s been a wild ride this past 51 weeks. I hope you are all doing as well as possible and are safe and healthy. It’s hard to believe COVID has been with us almost a year.

I had scans 2 days ago. A bone scan and CT scan with contrast. There was no change in the scans meaning that the cancer is stable. No progression. Status Quo. As I’ve said before this is the best possible news we can have. This means that the medication I’m taking has stopped the cancer from replicating.

The tension in our house understandably becomes high during this week of scans. When Evelyn heard I had scans scheduled her reaction was – again? Didn’t you just have them. Yes, yes, I did. But three months have passed and so here we are again.

Normally I have the scans ~2 days before the appointment with my oncologist. This gives the radiologist time to read the scans and write the report, but not too much time for me to fret over the results. With electronic medical systems I can see the scan reports (after they are approved for my viewing). Normally both the bone and CT scan reports come through within a few hours of each other. When I go to open them my hands literally shake. In December I couldn’t even open them and read them I was so nervous. Glen had to do it. Anyway… this month the bone scan came in yesterday but no CT scan. I checked early evening, no CT report. My mind immediately went to places it shouldn’t – the report wasn’t shared because it showed progression (why can’t our minds go down a ‘good’ rabbit hole?). I checked again this morning (after only ~4 hours sleep). No report. I checked right before I left for the cancer center. No report. All day I prepared myself for bad news. Then, Glen texted me when I was in the waiting room and said the report just came through my electronic file and it was stable. I could feel the tension drain from my body.

One of the more interesting aspects of dealing with this uncertainty is that I otherwise go through the day just like anyone else would. I spent the early morning texting neighbors looking for sand for Evelyn’s engineering project. I went on a walk with Glen before 3 hours of Zoom meetings. I talked with colleagues around the state and across the country about all the work related things that have to get done. I’m grateful for all of that because it allows me to push the cancer to the back of my mind. …but it’s always there.

COVID Vaccine! As an additional bonus I managed to get a COVID vaccine today! A Johnson & Johnson shot so I don’t need a second shot. “One and Done.”

I usually see the same techs when I get my scans and so we chat a lot during the process. One of the techs shared with me how to be available for extra doses the vaccine clinic might have at the end of the day. I went Tuesday but no luck. I went again today and they were hedging. In talking to the clinic manager he said they might have a few – he asked how old I was. In Colorado we are moving tomorrow to the phase where 50+ yr old who have two conditions can get vaccinated. I only have one. I said “51 , but I have stage 4 cancer.” I saw his face change expression. He asked me to have a seat in the waiting area and 10 minutes later he came by to get me. He checked me in himself and told me I was getting one of the Johnson & Johnson shots. Today was the first day they were distributing them. I got the shot and waited 15 minutes and was on my way.

Fortunately, my body handles vaccines and all kinds of medications without issue. I’m grateful for that, very few side effects at all.

Bonus vaccine on a good news scan result day!

Glen will get vaccinated at the end of the month and Evelyn will be eligible with the general Colorado population – hopefully by May. Maddy wil have to wait since she is 14. The vaccines are safe and effective – we will still be wearing masks in public and limiting our activities in the short term. Let’s all hope we can get wide scale transmission and mutations under control so we can figure out the new normal!

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.