MBC – Page 8 – Life As I Know It

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.

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

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.

Fall update – November 9, 2021

Most days, my living with stage 4 breast cancer is probably very similar to you. Wake up, enjoy coffee, scroll phone, think about what’s coming up. Lately that’s meant planning for Maddy’s 15th (golden! 15 on 11/15) birthday, helping Evelyn with college apps, planning meals, and sneaking in walks with Glen.

I’m grateful that my life with MBC as been so “normal”. It’s easy to get caught up in the normalcy of life – and then you have a day like today where I’m jolted back to reality.

Short version: My bone scan was stable compared to June (great). My CT scan shows 2 areas of “interest” (not great, but not necessarily bad). At this time they are not actionable so I’ll continue the same treatment regimen and we will repeat scans in early 2022.

Longer version: I had a bone scan in early October. This procedure images my entire skeleton to look for areas that are damaged by cancer or healing due to medication. It’s an inexact science with the radiologist looking to see how much uptake there was of the tiny amounts of radioactive materials (tracers) that are injected into me hours before. Areas of the body where cells and tissues are repairing themselves most actively take up the largest amounts of tracer. My scan from October looked the same as the one from June (where they thought there might be progression). The “no change” message is one we want to hear! The breast cancer cells in the bones can compromise the strength of the bone and cause other problems, largely it’s manageable.

I had a CT scan in late October. The CT scan goes from my neck to my lower abdomen. The purpose is to look for breast cancer cells that may have migrated to the soft tissue. Cancer in the soft tissue is more worrisome than in the bones.

I had to go to a different location to get my scan and I think a different radiologist read the imaging. My oncologist noted that this radiologist is very thorough and tends to be “conservative” in what is reported – meaning everything that shows up is documented.

My report listed 2 areas of note and things that we will monitor. No action at this point. We will compare the next scan in early 2022 to see if these 2 areas are problematic or not.

The first is a nodule on the upper lobe of my right lung. It’s small, 6mm in size. These nodules can pop up all the time. My oncologist said it’s too small to biopsy and wouldn’t show up on a PET scan. These type of nodules apparently are the most common incidental finding on scans. There is no way to tell yet if this is cancer-related. We will need to watch to see if others pop up or if this one gets bigger – or if it goes away.

The second is an enlarged lymph node on left side / arm. It’s enlarged but within the “normal” limit (8×12 mm). This type of thing waxes and wanes normally. Could be related to an infection, could be cancer, could be nothing. It’s something to watch.

What to make of all this? Well, it is a reminder that while everyday life seems normal for me, it’s really not a normal life. I hope that as you go about your day and encounter others, remember that you have no idea what might be happening in that person’s life. Be kind. Be thoughtful. Live each day to the fullest.

p.s. Glen and I are making the most of each day. Last week we splurged and saw one of our favorite artists (Sting) in concert. Fortunately, they required full vaccination and we made masks part of our stylish outfits! (And I’m guessing no one who saw us would have imagined what my health situation is!)

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!