Uncategorized – Page 5 – Life As I Know It

Science – August 15, 2022

Summer is slipping away, I noticed the air felt different yesterday afternoon during a walk. I’m sitting outside as I write this listening to the soft sound of rain. The monsoon kicked in and we’ve had a lot of wet afternoons and evenings.

Update short version:

I had medical appointments last week.

My CT scan (which is imaging of my chest, abdomen, pelvis) was “stable”. Excellent news! We DO NOT want the cancer to migrate to the soft tissue organs. It’s much more difficult to manage.

My tumor marker blood work rose again (not great, we want lower, not higher). This alone is not evidence of how things are going.

My oncologist is good with the CT scans so we continue onward. The new medication may be working. (I’m nervous and concerned because I have lobular breast cancer which can migrate to the GI track and other places and it does NOT show up on imaging.)

So, onward! More medication, more walking daily, more trying to be intentional. I hope you all are living each day to it’s fullest. You are not guaranteed tomorrow.

If you are on Instagram my MBC account is @nottodaymbc

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Longer version. I’m in a clinical trial where I don’t know if I’m getting the extra medication being tested or a placebo. In researching it more, I’m thinking I just want the actual meds. 🙂 They are FDA approved for this use, the trial is to see how effective they area.

I’m a HUGE advocate and proponent for science. You all know that.

This clinical research trial (CRT) is basically taking the “regular” medicine alone vs. taking the “regular” medicine with an “extra” medicine. The phase II trial showed that the “extra” medicine extended the time before a breast cancer patient had progression. (Progression is when the cancer finds a way to grow.) The trial I’m currently enrolled in is to determine how much more time a patient gets before progression.

Like I said, I’m all about science.

But this is personal. This is literally a matter of life and death.

I might be getting the “extra” medicine and then that would be great. I might be getting the placebo and missing out on the benefit of the other meds.

I don’t think I’m willing to risk not getting the “extra” medicine.

If I withdraw from the trial will it set back science? Yes, maybe a little.

Will it give me piece of mind to know I’m getting the actual meds and not the placebo? Yes, for sure.

What if I’m already getting the “extra” meds? I don’t know. Maybe I am, maybe I’m not. There is a 50/50 chance.

I’ve been thinking about all of this a lot; especially since my cancer tumor marker bloodwork is not great. Why are those numbers rising? Is it because they are unreliable or is it because this lobular breast cancer (that doesn’t show up on imaging) is growing in some other area?

So. Much. Uncertainty.

I really thought that science was more concrete than this. This is more like art mixed with science with a dash of uncertainty sprinkled in.

So what to do?

Stay positive – do whatever I can to keep a positive mindset and know that I’m doing all I can to be as healthy as possible.
Be informed – try to read as many scientific articles about this trial and the medication as possible

Meanwhile, life.

Cara was here visiting and we went to Colorado Springs for ziplining and whitewater rafting.

Evelyn moves in to the dorms today at the University of Colorado.

Maddy starts her sophomore year of high school on Thursday.

Glen and I celebrated our 21st wedding anniversary last week.

I’m not letting life pass me by and you should not either. Seize the day.

Rafting on the Arkansas River. I’m in the bright pink shirt. Cara is middle row closest to camera and Maddy is far side of the boat, second back.

Hiking with Glen, late July. We are so fortunate to live somewhere with beautiful vistas!

Maddy spent 5 days in Wisconsin and then Cara 5 days here. We went to Meow Wolf in Denver and then to dinner as a last family adventure before school starts.

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Current treatment:

Fluvestrant (Flaslodex) monthly (2 shots) – Selective Estrogen Receptor Degrader (shuts down estrogen)

Lupron monthly (1 shot) – puts me in menopause

Zometa, quarterly (infusion) – bone strengthener

Maybe Verzenio (CDK 4/6 inhibitor) or maybe placebo (clinical research trial: postMONARCH)

Uncertainty – July 15, 2022

Uncertainty is tough. We all deal with it everyday and it’s stressful. Hopefully we all have coping mechanisms to deal with it.

Uncertainty with health is a different level for me and probably for anyone with a chronic or life threatening situation.

Last month my oncologist and I agreed to change my treatment plan because it seemed like it was not effective any longer. That’s a hard thing to process.

While there are “Standard of Care” treatment plans for metastatic breast cancer (MBC), it’s not as black and white as you might think. There is room for the doctor to try to tailor the treatment to the patient. Whenever there is a change in treatment there is opportunity to enroll in a Clinical Research Trial. Trials are important because it is a key part of the process in how new treatments are discovered and approved.

My treatment is standard of care “plus”. In this CRT I’ve enrolled in (postMONARCH) I may be getting additional medication or a placebo. It’s a blind study so I don’t know which I am getting.

I don’t know if it is working. I won’t know until several months have passed.

I will have scans again in early August. This is much sooner than I had been getting them because the CRT requires CT scans every 8 weeks. (That also is concerning to me.)

This morning I received bloodwork for my CA 27-29 tumor marker. It’s jumped up a lot. Way more than it ever has. I don’t know that it means the medication is not working – it’s too early to tell I think. I am reading that sometimes when you start a treatment the counts can spike (Patient Guide to Tumor Markers).

So. Much. Uncertainty.

How do I deal with it? Good question.

Honor the uncertainty. It’s not helpful to bury my head in the sand and ignore this. It’s not going away so figuring out how to manage my stress about it is important.
Spend time meaningfully. I feel better when I’m doing something. Keeping busy doing things that I value or spending time with people I care about helps.
Trust the Science. The science of medicine continues to advance. Medical practitioners go through extensive training to best treat patients. I also believe there is a mind-body connection so mental health is equally important.
Take care as best as possible. Continue to eat healthy, move as much as I can, sleep. Control those things I can control. (As evidenced in the photos at the end of this post.)

Life is good and it also has terrible elements. Don’t let those bad moments outshine the good.

Walking in early morning to beat the summer heat.

I LOVE to sit outside in summer and we added lights to make the space more inviting in the evenings.

We have a nice walking path that circles our neighborhood. It’s a nice 15 minute walk that helps me clear my head.

3 years

3 years ago was the summer of 2019. Before COVID-19. Life was normal.

What were you doing that summer? What were your hopes and dreams? Did you plan to reach out to that old friend? Or get in better shape? Clean out that closet? Eat healthier? Maybe you wanted to travel somewhere on your bucket list, did you go?

What have you done in the past three years to make yourself happy? To make the lives of others better? To make the world a better place?

If you are like me, you have ideas in your head of things you want to do. Lots of things. Often, these are things for later, for when the kids are older, or out of the house. For when we are not so busy at work. For when we have more money. For tomorrow.

But life is funny. It has a way of moving forward with, or without us.

It’s easy for us to get into a routine. Routine is good – it gives us structure. It gives us a framework for our daily life.

Routine is also safe. It’s an easy excuse for why we don’t go out of our comfort zone, out on a limb, take a risk. Do something out of the ordinary.

Three years sounds like a long time. If you look back at that summer, it may not seem that long ago. (Yes, ok, COVID made time slow down, I admit that.)

Life slips away from us. Life is all the little moments aggregated together. If we are not careful, we get swept up in the everyday and forget to take a step back and look at the bigger picture.

What if, in the summer of 2019, you were told you had a terminal illness and that the life expectancy was only a few years? Would you have spent the last 1095 days doing what you did?

It’s hard not to take each day for granted. It’s our responsibility to make the most of each day, make the world a better place, and leave this world better than when we entered it.

Don’t wait.

Update: New treatment & trial – June 16, 2022

Well, yesterday I was at the cancer center to start my new treatment. This is the second “line of treatment” for me. As I’ve mentioned before, there is no cure for MBC; there are a number of treatment options, or lines. The goal is to stay on each line of treatment as long as possible.

Leaving the cancer center – finished all appointments (including a ton of blood draws) and am now on my second line of treatment. Fortunately, this is ~5 miles down the road from my house so easy to get there.

My first line of treatment was one month shy of 3 years. (Personally I was hoping for at least 5 years!)

My second line of treatment includes a clinical trial. I recently put together a web page about Clinical trials. You can view it here: Treatments & (Clinical) Trials. I don’t have it linked anywhere yet on this blog and will soon.

I have the type of breast cancer that grows in response to estrogen (estrogen receptor+/progesterone receptor+: ER/PR+). So, we try to eliminate the estrogen as much as possible. I was taking an Aromatase Inhibitor (AI) (Anastrazole), however, that seems to not be working any longer.

A standard second line of treatment is Fulvestrant (aka Flaslodex) which is a “SERD” Selective Estrogen Receptor Degrader.

A SERD blocks estrogen in a different way than an AI. Fulvestrant (a SERD) blocks the effects of estrogen on hormone ER/PR+ breast cancer cells by sitting in the estrogen receptors on the cells. If Fluvestrant is in the receptor, estrogen can’t attach to the cancer cell and the cell doesn’t receive estrogen’s signals to grow and multiply. It also changes the shape of the estrogen receptors so they don’t work as well. (breastcancer.org)

Fluvestrant is given by injection into a muscle – the back of my hip (literally a pain in my ass!). I will get 2 shots monthly.

I’m also doing the postMONARCH clinical trial. In addition to the monthly injection of Fluvestrant I am taking an oral medication twice a day. I don’t know if I am getting medication (Verzenio, a CDK 4/6 inhibitor) or a placebo. A clinical trial includes a lot of documentation and paperwork! More on that later.

The study is trying to determine if adding Verzenio to Fluvestrant gives better results: longer progression-free survival (PFS). They are probably going to look at overall survival (OS) as well.

We are leaving for vacation in 2 days. We are all crossing our fingers that I don’t have any significant side-effects or adverse reactions. Hawaii here we come!

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Second line of treatment: Fluvestrant shots and clinical trial (Verzenio or Placebo, oral), Zometa infusion, Lupron shots

Cancer and COVID – June 2, 2022

I don’t have much of a cancer update, sharing just to touch base.

Cancer-wise things have been pretty status quo since March with blood work and I’ve not had any weird new side effects or aches/pains. My tumor marker (CA 27-29) is still much higher than we’d like. The only way to know what is going on is to get scans.

I had scans the end of May. However, I also got COVID right after that. So, I got my scans but could not go for my appointment to get the results. I also could not go for my monthly lab visit and treatment.

I have things rescheduled for next week, when I’m hopefully feeling better.

Glen and I both got our second booster in mid-April, so I’m as current as you can be with vaccinations.

I know some people are pretty indifferent to getting COVID and they feel like it’s just something that we have to deal with and it is an inconvenience. That is largely true for the healthy population.

For those of us with life threatening health conditions, getting COVID impacts our ability to be treated, which can impact overall health and survival.

Each month I get a shot that puts me in menopause. This is important because it shuts down my ovaries and keeps them from producing estrogen. The breast cancer feeds on estrogen. I could not get the shot because of COVID.

I share this not for sympathy or pity or anything like that. I share because COVID is no joke and impacts many people in adverse and very serious ways. Please continue to take it seriously.

Get vaccinated. And boosted.

If you have any symptoms or have been exposed, wear a mask, it’s not the end of the world to cover up for a few days. 🙂

I’ll know more about any health changes later next week and will post an update then.

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First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions.

February 15, 2022 – Update

Happy belated Valentine’s Day. I hope you were able to celebrate those in your life you care about and celebrate yourself!

My monthly update is pretty boring, which is how I like it.

I saw my medical team last week for a blood draw, check in and treatment (which is just a Lupron shot in the clinic). Overall things are “fine”.

My tumor marker number has been steady. 146 in December, 146 in January, 147 in February. Does this mean anything? Maybe. Possibly not. The marker (CA 27-29) is used to give information on the cancer throughout my body. This steady number is good in that it means that there is no reason to think that the cancer is actively growing and spreading.

Of course, we can’t know that for sure, that is where scans come in. I will have scans again in early March.

Sounds a bit like a movie on repeat. Yup, sure does.

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First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in early March.

Gratitude – November 25, 2021

Time marches on and today is the Thanksgiving holiday. As I sit here with the Macy’s Thanksgiving Day parade on, silent in the background and a bright blue sky with frost on the grass, I’m thinking about all the things to do today. And I’m grateful for all those things. I feel “fine” and have the energy to bake pies and help Glen grill a turkey and make a last minute run to the grocery store. Most of that will happen this morning while our teens sleep.

I’m grateful for science too because I have science to thank for this. My doctor appointment last week was “uneventful” largely because the medication to keep my cancer from progressing seems to be (mostly) working. My blood work looked fine and my CA 27-29 tumor marker was steady from last month.

At the appointment we talked a lot about what my scans from last month showed. An enlarged lymph node and a small new nodule in my lung. I remembered that I got my COVID booster 3 days before my scan and the enlarged lymph node was on the side where my shot was. We all think (and hope) that is the reason for that. The lung nodule – who knows?

A friend asked me how I’m doing with so much uncertainty. I believe there are two ways to approach this. I can panic and fret about if the spot in my lung is cancer. I don’t think that is a good choice of energy. I cannot do a single thing about this lung nodule and won’t know more until after I have scans in January. So, I spend the time until then soaking up life and doing things that are meaningful to me.

I’m choosing to live in each moment as much as possible.

I’m trying to read more books, go on daily walks outside and celebrate milestones. Maddy turned 15 earlier this month. Her Golden Birthday (15 on the 15th). We had a birthday weekend celebration that included a movie, dinner, a surprise party and two cakes.

Evelyn got her senior pictures and is busy applying for college. She’s interested engineering. We see less and less of her as she and her friends do more and more together (thanks to vaccinations!).

Glen and I are enjoying being “office mates” and continue to find time for walking and cooking and are experiencing more and more empty nester moments as we find ourselves home alone.

I hope you all have a relaxing holiday and find the time to do things that are meaningful to you.

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Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in January.

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.)

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,