LifeAsIKnowIt – Page 7 – Life As I Know It

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.

Keep on Swimming – update, June 7, 2022

It was a good run. I’ve been on the same (first) line of treatment for nearly 3 years (July 2019). Alas, the oncologist thinks that the medication is failing me and that we should move to the next line of treatment.

It’s important to note that the medication is failing ME and not the other way around. I’ve done nothing to cause this.

I had a Zoom call with my oncologist this morning because I’m still under the weather from COVID. He went over my bone scan and CT scan results.

Short version – The CT scan showed some mild bone disease worsening and new small fractures on the C7 and T3 of my spine. Given that we’ve had the “should we change treatment?” conversation for ~6 months, he thinks it’s time.

Previous areas of my spine impacted include C7, T9, T10, L4 and S1. Latest scans show more fracture on C7 and also T3.

So, disappointing but not surprising or unexpected. The doctor was very upfront with me from the beginning – we have medication to treat Metastatic Breast Cancer (MBC) but no cure. Eventually all the medication will fail. It’s not a matter of ‘if’, rather ‘when’.

We are finalizing my next line of treatment. The standard of care is a drug called Flaslodex (aka Fulvestrant). I’ll share more about it later.

I have 2 options: (1) Flaslodex alone or (2) randomized clinical trial with Flaslodex and Verzineo (Abemaciclib, another CDK 4/6 similar to Ibrance). I opted for the trial.

A research nurse will call me about the trial and we will sort out details.

Sigh. Knew it was coming. Still a bit of a gut punch. This is the long game though…

I asked about progression free survival (PFS) on Flaslodex. He said his general experience is 1-3 years. He said I did better than average on Ibrance and so that could be an indicator of how well I respond to treatments. Overall, of course, hard to say.

I may have to go a bit without treatment so it flushes out of my system before starting the new one, especially for a trial so that they can be sure the effects are from the new medications.

As of today, still taking first line treatments (even though they are failing me): Ibrance, Anastrazole, Lupron, Zometa

March 27 – doing life right

March 27, 2022

On March 27, 2009 I was 39 years old.

Our girls were 2 and 5.

We lived in Illinois and had accepted jobs in Colorado.

We were selling our brand new home and house hunting in Colorado while working full time and part-time remotely in our new jobs.

Glen was planning for an 8 week field campaign for late spring.

And I was dealing with breast cancer during all this.

March 27 I had a single mastectomy and we thought we were on the road to putting this all behind it.

This morning I looked at my “Facebook memories” like I do each morning and was sad. And it’s ok to be sad, for a little while.

2012 Facebook post. I still think Young Survival Coalition is amazing!

And yet….here we are.

Thinking back to 2009, I did become aware of the statistic that 30% of breast cancer “survivors” who are ‘cured’ have it come back as metastatic, uncurable.

I also firmly believed I was not going to be in that small, elite group.

I have to say, this is the worst club I’ve ever belonged to, and it has the most amazing individuals.

Reflecting on what I would do differently over the past 13 years….not much.

I eat healthy, I could have exercised more (who couldn’t?!) I prioritized sleep around 2015 — so yay me. My focus has been on my family and my career.

I see many people with a cancer diagnosis, including metastatic breast cancer (MBC) comment that their diagnosis “changed their life”. It caused them to reprioritize. It helped them focus.

With all due respect, they were doing life wrong.

A cancer diagnosis shouldn’t make you change your life. You should make those changes now. I didn’t need cancer to ‘show me the light’.

Take care of yourself.

Eat healthy (Eat food. Not too much. Mostly plants. -M. Pollan). Move your body. Spend time with people you care about. Have a hobby and spend time doing things you enjoy (and yes, that can be work, but not all work).

Am I more cognizant of my choices with my MBC diagnosis? Yes, of course.

Is MBC at the center of all decisions I make? No, of course not.

I never, ever thought this would be my life. It changes on a dime as many of us know. I’m not brave or strong (maybe a little). I’m living the life I was dealt.

Make the most of your time on this planet. You don’t get a second chance.

March 16, 2022 -Sneaky Lobular Breast Cancer

Where to start – I had scans on Monday, March 7. The fantastic news is that both my bone scan and CT scan were stable! What does that mean? Based on the imaging it looks like the cancer is quiet in my skeleton and it does not appear to have spread elsewhere. Yay! The oncologist uses the scans as the measure of how well the medication is working so – we stay the course. Same medication, go back monthly for checks. Scans again in 3 months.

Every month I also get blood drawn for a tumor marker test (CA 27-29). The blood tests may or may not be reliable as an indicator of cancer activity. My oncologist orders this test but doesn’t make treatment decisions based on it alone.

A CA 27-29 value of under 38 means no active cancer. At diagnosis I was 122. As I’ve mentioned previously, my numbers dropped to a low of 42 in February of 2020 and have been rising steadily since then. This past month it jumped a lot. The most it ever had. I’m not going to lie, it freaked me out. That number is now at 185. (Note, numbers can vary wildly, I know some MBC patients with values around 3,000.)

Why worry about this if the data might not be reliable?

Well, I have invasive lobular breast cancer. The cancer is missing an enzyme and so instead of forming in a mass, it forms in a string. This means that lobular breast cancer doesn’t generally show up on scans.

So, is the tumor marker rising because it’s just not reliable for me? Or is it rising because the lobular cancer is active but just not visible on scans?

🤷‍♀️

We just simply don’t know. Lobular breast cancer is a very distinct subtype and also very understudied. As a result, it is treated just like the more common ductal cancer.

In the meantime, I continue to work, walk and spend a lot of time with the family. We took a few days to go up to the mountains to ski with family and it was fantastic to be able to go do that.

Take care of yourselves. Get vaccinated and boosted and really live today!

The crew at Copper Mountain ski resort. It was gorgeous weather!

~~~~~~~~~

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

What I want for Christmas + Update December 21, 2021

It’s the holiday season and doesn’t seem like it thanks in part to our warm weather. As our immediate family prepares to celebrate, I’m both happy and filled with anxiety.

I have not been feeling great the past month – more aches than usual and general discomfort (that has not risen to the level of ‘pain’) along with fatigue. My dr. appointment last week shows that the blood test for the CA 27-29 tumor marker (which is an indicator of the amount of circulating breast cancer cells in blood) jumped up 30 points. It’s now higher than when I was diagnosed. (122 at diagnosis (7/2019), lowest value was 42 (2/2020), rising steadily since then, currently at 146. Below 38 means no active breast cancer.)

What does this mean? My oncologist wants to get some scans to confirm. Between the blood work and how I’ve been feeling, I will not be shocked if the conclusion is that this first line of treatment has failed.

As a reminder, once a treatment fails you can’t go back to it. There are a finite number of treatments so I want to stay on each one as long as possible. There is also no guarantee that a particular treatment will work at all.

We knew this was coming. If I know the treatment is not working I’d prefer to get started on a new one with the hope that it knocks down the cancer. My anxiety is coming in mainly because of COVID.

Sadly, a select number of people in the U.S. have made COVID a political issue and some people are thinking that they don’t need to worry about COVID because “they will be fine” even if they get it.

The newest variant, Omicron, is spreading very quickly and has mutated enough that there are breakthrough cases for vaccinated people. And it’s critical to note that vaccinated people who get COVID typically do not get a severe case and do not need to be hospitalized.

If I get COVID between now and my scans, I can’t get my scans. If I get COVID I cannot enter the medical facility to get my scans and that means I can’t confirm what the cancer is doing and move to a new treatment plan if necessary. I cannot explain the high level of anxiety this brings to me.

It also makes me sad, angry and disappointed.

I – and my family – should not have to hide away from society to avoid COVID.

Each time someone is infected with a virus it has the opportunity to mutate. Vaccines don’t cause the mutation. Vaccines reduce a virus’s ability to infect people. This gives the virus less opportunities to mutate.

If everyone would get vaccinated, we would likely see mutations of COVID slow or stop.

The COVID vaccine is safe and effective. It reduces severity of disease. Even if you are not at high risk (e.g., young, healthy) you should get the vaccine to help stop the spread and mutations.

There is a disinformation campaign in the U.S. that is mind boggling. People pushing this misinformation have been vaccinated and many have gotten the COVID booster!

People who have not been vaccinated are more likely to end up in the hospital. Hospitals in Colorado are overwhelmed with unvaccinated patients. Even in Boulder County (73% vaccination rate) the hospitals are near capacity with patients from other parts of the state where there are fewer vaccinated individuals coupled with limited health care options.

Hospitals at capacity are not good for cancer patients or anyone else – think car accident or an older individual who fall and might need hospital care only to find there are no beds available for them to be treated. I know of one cancer patient who needed a port put in so she could more easily take her chemotherapy treatment. It was classified as an “elective” procedure and was de-prioritized due to COVID overwhelming her hospital.

If that’s not enough to convince you of the adverse impact of COVID – we will continue see professional sports games cancelled or postponed because of so many COVID infections! You won’t even have that entertainment as you recover at home from COVID.

Much of this can be avoided. Please, please get vaccinated and encourage others to do the same.

Between now and my scans on January 6, I’m going to hope that anyone I encounter is a thoughtful and caring individual who fully vaccinated.

What I want for Christmas is for everyone to get the (free) COVID-19 vaccine and reduce their risk and mine of serious illness.

~~~~~~~~

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

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,

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!