Update – Page 2 – Life As I Know It

All Systems “Go”🚦

September 19, 2024

Hello friends and family! Welcome to fall (almost). The nights are getting cooler here and I’ve seen photos from others that the aspens are starting to change color in the mountains.

I write with good news. My PET scan of earlier this week shows that I’m stable. This is fantastic; it means that the cancer is not growing or spreading. The caveat is that lobular breast cancer sometimes doesn’t show up well on imaging. However, my blood tumor marker number dropped as well! The CA 27-29 gives an idea of how active the cancer is. A number of 38 or lower means the cancer is inactive. In mid-August it was 109. On September 11 it was 93! That was very welcome news!

The combination of the tumor marker dropping and my scan not showing progression means I can stay on the same treatment. I’m currently getting Enhertu every 3 weeks. I’ve got medications to deal with the side effects, overall I’m tolerating it very well.

I also spoke with my orthopedic surgeon this week. My recovery is going very well and he wished me a good time on my upcoming trip. He did mention several times how bad of shape my hip was in. I’m feeling grateful that I no longer have pain and hopefully I will be able to walk unaided soon. I still have some swelling and it’s hard getting used to walking since I’ve been using a cane for 2 years.

Tomorrow Maddy and I leave for Belgium. We are attending the International Lobular Breast Cancer Symposium! I received a travel grant from the Lobular Breast Cancer Association for which I am very grateful.

The symposium is 3 days long and the first day is focused on patient advocates. Maddy will come with me that day. The other 2 days are more research focused. We are excited to go and learn where research is headed for lobular breast cancer. My oncologist was not familiar with this conference and asked me to brief him on what I know. I’m more than happy to do that!

Not gonna lie – we are happy to go to Belgium as well. We should have one day where we can sight see. We will be in the city of Leuven which is east of Brussels. Watch for photos in the next blog post.

Life is good, right now for me life is great. I’m going to take it all in while also making sure I rest and don’t overdo it. Maddy may need to help me with that.

Onward!

My shiny new hip

September 7, 2024

I’m happy to share that my total hip replacement was a success! I had the surgery on Tuesday and was home Wednesday afternoon. My first home physical therapy session was Friday and he cleared me to walk the cul-de-sac. All the pre-habilitation has paid off!

Thank you to everyone who has sent well wishes and flowers and text messages. They are very much appreciated and each one brightens my day.

So, it turns out that my right leg was 1.5 centimeters shorter than my left leg. Over time, with the cancer eating away at my hip, the socket flattened out. The top of the femur also flattened out. It was months in the making so I didn’t necessarily notice the leg difference. It feels weird now to have both the same length – the right feels longer than the left.

He put a ceramic socket in and attached it to the cement/hardware that he put in a couple of years ago. My hip is not strong enough to have the socket attached to the hip bone, like in a normal hip replacement.

The top of the femoral head is metal (titanium I think). When he was putting it in my femur cracked (again, weak bones) and so he had to wrap some wire around it, kind of like a wine barrel. Overall he said the procedure was good and doesn’t expect any kind of complications with the healing.

Ann came out and was my caregiver for which I am extremely grateful. Maddy took the day from school to come to Denver and wait with Ann during the surgery.

The weather has been good and so I’m looking forward to walking outside. My PT comes again on Monday and I’ll be looking to walk longer. The cat is happy that I’m spending a lot of time in the recliner! On Monday I’ll get back to working, probably from my recliner!

I’ll have a check up in 2 or 3 weeks. I’m still planning to go to Belgium with Maddy for a breast cancer symposium later in September. The work must go on!

I also have a PET scan mid-September to see if the cancer is stable or growing. Keep those fingers crossed! 🤞

Onward!

Toward a New Hip

August 25, 2024

Happy end of summer everyone. It’s been a good one for me all things considered. I had some work travel and also some fun personal travel. I was in Wisconsin with Evelyn and Maddy to visit family and shortly after that we took a family vacation to Kauai, Hawaii.

The Nepali coast. You can only see this area by foot, boat or aircraft

Kauai was beautiful as you might expect, it is called the Garden Island! We had a grand time. I was not able to do all the things they did with hiking and surfing. I did mange to read two books and get through a full season of a Netflix series. Those are things that an are tough to do in daily life.

My cancer is still here of course, just hanging out. I had a PET scan in July and it was a bit “brighter” than the previous scan. What does that mean? Could mean that the bones were healing (growth) or it could mean that the cancer is growing. Confusing? Absolutely!

My tumor marker numbers (taken via blood work) have been pretty reliable. The higher the number the more active the cancer. Over summer, they had been creeping upward a bit. But….the most recent blood work saw them drop back down.

So, my oncologist decided we would repeat the scan in 2 months instead of 3. I am scheduled for a PET scan mid-September. After that we will determine if we should switch medication (progression) or stay the course (stable). We talked about what is next….a different kind of chemo. There is the possibility of getting into a clinical trial which I will try to do. More on that later when we get to that point. It is good to have options. As I’ve mentioned many times before, there are limited lines of treatment. Once I run through them all, then that is it. So, we want as many options as possible. Adding in clinical trials is a way to increase the number of treatment lines AND help advance scientific research.

In the meantime, I have this fracture starting in my acetabulum (extending from the socket of my hip) extending upward into my hip. The femur connects with the fracture when I step, causing a fair amount of pain and discomfort. I continue to walk with a cane to relieve the pressure. I actually wore out my first cane and had to buy another one!

Tuesday, September 3 (the day after Labor Day) I will have a full hip replacement. I’ll stay in the hospital for 2 nights and then recover at home. Glen has some international work travel so Ann has kindly agreed to come out and help me. I’ve been told by numerous people that recovery is not difficult. I’ve been working with my physical therapist on some pre-habilitation to make sure I’m in the best possible place. In addition to the PT exercises I continue to walk daily. I’m up to 8000 steps a day which I think is pretty good.

I did learn what it means to have a full hip replacement. If you are squeamish you might want to stop reading here!

They cut off the top of your femur and replace it with an artificial top. It could be metal or ceramic or plastic. Your bone is hollow and so they basically hammer the artificial femur top into your bone so it stays. They also put something in where the socket is. I’m not positive how that will be attached but likely with special cement. Apparently the material of the femur and the new socket are not the same material, it is rare for a surgeon to use a metal-on-metal replacement.

This image shows the various parts and how they fit together.

This image is pretty self-explanatory. The material for the socket and femur head will be TBD. My surgeon said he will be doing a posterior approach which might take a tad bit longer to recover from.

I am cautiously optimistic that this will go smoothly and I will be up and about in no time. My surgeon has green-lighted me to take an international trip 3 weeks after my surgery so he thinks the same thing apparently!

A few fun photos from summer. Missing here is Maddy’s first day of senior year, visit to Wisconsin, and many walks and lunches with friends.

Onward!

Shades of Gray 🩶

July 26, 2024

Like many things in life, medicine is not black and white. I’m reminded of this every time I have a test or conversation with my medical team.

Earlier in July I had a PET scan. This is one of the primary tools my oncologist uses to determine the status of the cancer. According to the PET, there was increased update / brightness on the image, potentially indicating progression or the cancer being active. However, my blood work (tumor markers) show things as steady, no progression. My tumor markers have been pretty accurate in general.

So, we have conflicting data, which makes decision making challenging.

Given that there are a finite number of treatments, the goal is to stay on each treatment as long as possible. Once you move off a treatment you can’t go back to it. The reason for this is that the cancer has mutated and figured out a way around the treatment so it wouldn’t be effective to go back and take the same medication after you have progression on it.

So, I’m in a situation where one piece of data says potential progression and another piece of data says no progression. What to do?

I will stay on my current treatment (Enhertu) but have another PET scan in 2 months, instead of the typical 3 months. This way we are not waiting too long if there is progression and if there is no progression then we just continue on.

This situation is stressful in spite of my trying not to be too stressed out about things. The uncertainty is hard to deal with.

Working in my favor are 2 upcoming months of lots of exciting things including travel. The best – and only – thing I can do is focus on the here and now and enjoy each day to the fullest. I hope you do the same.

Early morning sun on one of my neighborhood walks.

Enjoying Summer ☀️

Hello friends and family!

First, a very big thank you to everyone who wished me a happy birthday. It was an incredible month topped off by an open house for the ages. I felt the love. Thank you, thank you!

Second, I don’t have much to report. Yay! My infusions are every three weeks. I got my tumor markers back and they dropped down a little bit so basically I interpret that as holding steady.

I have a PET scan this week. My oncologist uses the scans to look for progression. I’m feeling pretty good about it because I both feel good and I think my tumor markers are reliable. If they had started to rise I’d be more concerned.

I’m mostly just trying to enjoy summer, my favorite season. I had an epic weekend with family here. I wish they could come more often and stay longer.

Evelyn, Glen, Cara, Rob, Ann, Lynn, Paul, Donna, Maddy, and Nancy. A huge thanks to Nancy for the informative t-shirts with facts about MBC. Glen even got flowers in the MBC colors!

I’m getting out for walks in the neighborhood, aided by audio books. I am working on my stamina and also working with my physical therapist on “pre-habilitation” to prepare for my hip replacement on September 3.

We just returned from a holiday weekend in Steamboat Springs – one of our favorite mountain towns.

The base of the ski hill is where we like to stay in summer too!

Whatever you are doing this summer, make the best of it!

Onward!

June 2024 update

June 17, 2024

Here we are in full swing of summer. Flowers are blooming, the sun is shining and I’m enjoying all of it.

I had infusion #7 of Enhertu last week. It was an uneventful appointment which is always good. I received a bunch of pre-medication (anti-nausea meds and steroids), a big old bag of fluids (for extra hydration) and Zometa (a bone strengthener). The Enhertu itself only takes about 30 minutes but with everything else it comes out to around 2.5 hours.

I typically feel quite good the day after an infusion. The fatigue starts to hit 3-4 days later. I try to take it easy those first few days because it’s easy to overdo it.

My activity is mostly waking outside now on the cul-de-sacs of our neighborhood. They provide good stability and I can lengthen or shorten my walk pretty easily. At least easier than if I was doing a big loop around our neighborhood. I’m walking long enough now that I can easily listen to some audiobooks which is nice. I’ve missed that. I’m currently listening to How to Solve Your Own Murder by Kristen Perrin.

Anyway, I’m doing fine overall.

I did meet with the orthopedic oncologist last week as well. He validated my pain pointing out on my CT scan that a part of my hip has cracked and broken off and there is the fracture extending through my acetabulum. My femur hits that area each time I put pressure on my leg.

My right hip is on the left of the image. You can see the femur head is not round like it should be. This is from hitting the actual hip – which it should not be doing. You can also see a triangle in the lower center of the left side. That is a part of the hip that has cracked off.

The very good news is we have a solution! In early September I will get a hip replacement. I am very much looking forward to this. The orthopedic surgeon is very confident this will solve the problem. I’m looking forward to walking without pain. My family is also looking forward to my being more mobile. My situation impacts them as well so we will all be happy once I have a shiny new hip.

Onward!

🎂 Birthday Month 🎉

June 1, 2024

It’s my favorite month of the year – mostly because it’s warm and sunny and summer; also because my birthday is the 26th. This year I’ve decided to celebrate all month, I deserve it! (Heck, we all deserve it!) I will be 55 this year. Next month is my 5 year anniversary of living with Metastatic Breast Cancer (MBC). 5 of 55 years with cancer. That doesn’t count the 6 months I dealt with it back in 2009.

Anyway, yay! The cancer is stable.

I have had 6 infusions of Enhertu and it seems to be keeping the cancer quiet. I’ve noticed that my hair is falling out a bit more, it’s quite thin. I’m also taking a fair number of medications to keep other side effects at bay.

I discovered that the steroid I get as a pre-treatment actually helps with the pain in my hip. So, for the time being I’m taking additional steroids daily to make moving about easier. It’s helped tremendously. My physical therapist says I’ve made great progress over the past month. Here’s to hoping that continues!

I have an appointment mid-month with my orthopedic oncologist to see if he can help with eliminating the hip pain. More on that later.

My CA 27-29 tumor marker is a way we monitor for progression. I get tested via blood that gets sent to the Mayo Clinic in Minnesota, every three weeks when I have my treatment. My numbers are still hovering around 100 which is not great but I’ll take it. If it is below 38 then the cancer is quiet and not active. I’m still doing wonderful overall though so I’m not too disappointed.

I’m still working full time with a very flexible schedule. My remote work makes for lonely days but a few wonderful friends make time to come by for tea or lunch which makes a big difference. Later in the summer we’ll do some traveling as a family. This month will be fun at home.

April 2024 Update 🌷

April 14, 2024. Hi everyone – just a quick update on things here in cancerland.

This past week I had a PET scan and an infusion of Enhertu (chemotherapy). Both went smoothly, no problems at all. I’ve not seen the PET scan report, but I received a voice mail from my oncologist that things were “stable” meaning the cancer did not look like it was growing. The infusion treatment on Tuesday also went smoothly with no issues. My blood work and tumor marker continues to drop, indicating the medication is doing its job.

I am very grateful for all of this!

I continue to have mobility issues with my right hip. It’s not clear if it is cancer related or not. I’m on a lot of pain medication right now due to my lower back. Next week I’ll reach out to my oncologist and see if we can get an MRI so we have more detailed information.

The impaired mobility is significant. I cannot walk without assistance and my hip flexor is extremely tight. I’m trying to work in some upper body free weights and additional lower body stretching. I’ve not returned to doing outdoor walks, my stability is not great. I may look at longer walks on our home treadmill to get some endurance going.

I hope that signs of spring are apparent where you live. We’ve had some lovely weather here and I hope it continues!

You can follow me on Instagram at @nottodaymbc where I tend to post more daily cancer-related updates. I post to Facebook but not much health-related information. Of course I always welcome a text message or snail mail if you feel like getting in touch.

Enjoy whatever weather Mother Nature throws at you!

Spring and renewed hope 🌷

Hello friends and family. We are well into March and you, like us, are experiencing the crazy weather that happens when Mother Nature is trying to change seasons. After a week of 60 degree temperatures, last week we got close to 17” of snow at our house and snow days from school (even the University closed for a day).

The view from our bedroom window just after the snow ended. We lost the little tree in the center of the photo and some of the larger bush branches by the fence.

Anyway, I’m looking at spring as a time for renewal and new beginnings. I started a new medication in February and it appears to be working based on the blood work. I’m getting IV chemo called Enhertu. It takes about 3 hours to get all the various meds dripped into me. Fortunately I’m not having much in the way of serious side effects: fatigue, some neuropathy in my hands, and gas. So, not great but overall not a big deal.

I’ve talked a lot about the tumor marker CA 27-29. It’s a way to get some data about how well a particular treatment might be working. Oncologists don’t make treatment decisions on tumor marker data alone but it’s a good proxy.

My blood is drawn and sent off to Mayo Clinic in Minnesota for analysis. The results show up in my medical portal a few days later.

A number below 38 indicates no active cancer.

When I was diagnosed in July 2019 my CA 27-29 was 122.

The number had been climbing the past year, yet my scans didn’t indicate any progression.

I peaked at almost 800.

My March number was 130! Yippee!

It’s clear from this chart of my tumor marker numbers that the cancer does not like the Enhertu chemo! Let’s hope that my scans in April confirm this.

A graph of my CA 27-29 tumor marker starting in July 2019 when I was diagnosed. Any value under the red line indicates no active cancer. I started taking Enhertu chemo right at the peak on the right side. The Enhertu seems to be knocking down the cancer activity. The numbers on the x-axis are days since diagnosis

Be well my friends. Onward!

❄️ February 2024 Update ❤️

Hi everyone. It’s mid-February, time slipped away from me. The main message to you all is hello, I’m still here 🙂 working to get back to 100% and staying positive.

Last month I had 10 days of radiation (20 rounds total). The lumbar spine and S1 showed cancer growth and the recommendation was to zap it. They zapped it all right. That radiation took me out of commission for quite some time. The radiation was from my L1 down to my S1 and from both my front to back and back to front. Anyway, it was a lot of radiation and I did not do well with it.

Nancy came out for a week when Glen was traveling and drove me back and forth. I’m super grateful for that. She also helped with so much stuff around the house I can’t begin to thank her properly.

Evelyn & Keiron came home to make potstickers and visit with Aunt Nancy

The second week of radiation was hard. I became nauseous and could not keep anything down for over 24 hours. I got some extra IV fluids and switched my diet which helped some. I’m still not a fan of eating right now. The further I get from the radiation the better I’m feeling.

I turned right around from the radiation to start IV chemo. I have a new medication now (previously I was taking Xeloda oral pills). This will be every 3 weeks and an infusion so I have to go in to the cancer center.

The new medication is called Enhertu (Trastuzumab deruxtecan). The type of medication I get is based on my cancer sub-type. It turns out that this medication was just approved for my sub-type in summer 2022. Read that again. Prior to summer 2022 this medication would not have been an option. This is why research for new treatments is so critically important. Since I have been diagnosed there are at least 3 new medications approved to treat metastatic breast cancer. Please continue to spread the word about the importance of research for MBC.

Dance competition season has begun and Glen was taking Maddy to Colorado Springs for the weekend for dance. We felt like it would not be a good idea to have me stay home alone after this infusion. Ann came out and took me to my first infusion and then stayed through the weekend. Fortunately, I did not have much in the way of side effects – just fatigue. So, Ann and I had a lovely visit. She also helped with finishing up some errands and doing some shopping. We are grateful for her taking the time to come (even if all we did was work and sleep!).

Ann came with me to my first IV chemo infusion

So, today I’m feeling “ok”. I don’t have to take any medication regularly. I do have a fentanyl patch for pain. I’m mainly trying to get my right hip back in shape. The good news there is that both my physical therapist and acupuncturist think the problem is a very tight hip flexor (not cancer). If that really is the case then hopefully I’ll be walking better soon.

I’m super appreciative of my neighbors who have driven me to appointments, ran to the pharmacy for prescription pick ups, brought food or coffee, and sent cards. It all means a lot to me and my family. We appreciate you.

Tomorrow I’ll be watching the big game 🏈 (hopefully feeling well enough to attend a watch party). Of course my beloved Packers are not in the running, the commercials should at least be entertaining.

Be well, be kind and get out there and move as best you can. Sending love to you all in this Valentine’s month and beyond.

Onward!