It’s been a bit so a short update here. Short version: currently stable, minus a pesky tumor in my C1.
I had a PET scan earlier this month. I met with my oncologist today and the imaging didn’t show any change. I’ve been feeling pretty well lately so that is a good sign. My tumor markers keep climbing which is worrisome but there is no evidence prompting a change in medication since my imaging doesn’t show anything. I’ll continue on Enhertu for the next 3 months.
I do have a tumor in my C1 and compared to June it’s a bit more active. It’s possible that this is the reason for the rising tumor markers – it’s hard to say. I’m having radiation on the C1 (started today). More on that later.
Overall, I’m trying to stay active and have balance in my life. I think that’s hard for all of us, cancer is just one more thing to navigate.
We are officially in fall – hopefully you had a great summer and fall is off to a good start.
Onward!
Grateful for walking paths from the cancer center. I took a walk before my appointment today.
As New Year’s Day winds down I write to say hello to all my friends and family, near and far. 2024 was actually a pretty good year for me (unlike 2023) and I’m optimistic this year will be even better.
I had a PET scan in December and the results were “fuzzy.” Well, that is the first word my oncologist used. Let me explain.
He agreed that imaging was not very reliable for me. However, the results showed additional uptake of the contrast in a few areas where I have known cancer (mainly in my spine). On the one hand, other areas seemed quiet and unremarkable. (I want to get a t-shirt that says “I’m unremarkable” – if you know, you know.)
Dr. Andorsky said the most important thing is how I’m feeling. I feel great! Really, I am so grateful for my new hip and my fentanyl patch and other meds, and the fact that I can get up every day and work, exercise, read, paint – you name it. On the other hand, my tumor markers have been slowly rising. They tend to be accurate in terms of whether cancer is active or not.
The other thing to consider is that there are a finite number of treatments so you want to make them last as long as possible. I was prepared to argue to stay on the same treatment and I didn’t need to do that at all! He suggested we stay on Enhertu and revisit in 3 months.
In other news, the tingling in my left arm has gone away. I will attribute it to the blood clot I had under my left collarbone and that by this time it has dissolved and so has my arm tingling.
So, I stay the course which is the best possible outcome. I get an IV infusion of Enhertu every 3 weeks. The cancer center is only 5 miles from my house so I’m able to get there and back quickly. A typical appointment is 3-4 hours for labs, an office visit and then treatment.
The rest of life is going swimmingly. We had a lovely (short) visit with family in Wisconsin. Glen, Maddy and Evelyn have hit the slopes already. Evelyn has been popping home now and again. Maddy has a short break from dance so she is home a bit more as well.
Maddy and I head to Texas to see her grandparents, it will be a short visit – we are looking forward to it regardless. I’ve booked a trip to see my BFF in LA for February and our family is making plans for a few family vacations in 2025.
I hope you are able to approach 2025 with optimism, enthusiasm and peace. I hope to see many of you this year. You are always welcome here – we have plenty of room! Seriously, we’d love to show you around Colorado.
Onward!
Annual Nutcracker BalletToulouse loved present debris!Selfie with Mom and AnnYou can’t visit Wisconsin in winter without bowling.
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.
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.
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!
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.
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.
Summer flowersThis crazy cat makes me nervousAppreciating that I have enough hair for it to blow in the wind
Hello friends and family. Checking in with you all to share I have no big news. That is good!
I had my monthly oncology appointment and things are “fine”. I’m taking my Ibrance (CKD 4/6 inhibitor), I got my shots today (Lupron & Fulvestrant) and I’ll go back in 4 weeks. Such is the life of an MBC patient .
I’m grateful for this. So many friends and acquaintances with MBC are not in a relatively easy place. I acknowledge that life is good right now.
Life is good but not pain free. I had my back procedure on June 1 and I am still having hip and leg pain from the nerve compression by my spine. My physical therapist and acupuncturist pointed out that it will take 4-6 weeks after surgery to feel normal. So, I wait and hope that it all resolves.
My blood work – specifically tumor markers – have been rather erratic, bouncing high and low. Because of this my oncologist said he is going to focus on results from scans and take any blood work information “with a large grain of salt”. I will have scans again in August.
Scan, assess, repeat.
Late last month we were in Galveston, TX for Maddy’s national dance competition. She did amazing and we are super proud. We spent a few days in Steamboat Springs after the Fourth of July and it was very relaxing. I’m grateful for both opportunities.
I hope your summer is shaping up exactly how you’d like it to be. If you get some wanderlust, come on out to Colorado. We have space for you and lots of fun things to do in summer.
National Dance Competition, TexasMaddy placed first for her solo against 40 other dancersFun in Steamboat SpringsWildfilowers near Steamboat Lake, on Ernie’s property
Well friends, modern medicine for the win again. A few days ago I had a back procedure to help stabilize the lower back (lumbar region). Part of the procedure was something that a lot of people get (not cancer specific) – a kypoplasty. It’s basically where there is a compression fracture in your disk and they go in and “decompress” the vertebrae.
I had that done on my L5. When I met with the doctor the morning of the procedure, he explained that the cancer *really* likes my lumbar spine. It had been eating away at the various vertebrae and destabilizing my back.
I do find that every 9 months or so I’ll get crazy back pain that prevents me from doing just about anything. Within a few days it typically resolves. I’m hoping this will solve that problem.
Anyway, he wanted to go in and inject cement into the spaces in my vertebrae to shore them up and give me a lot more core stability. I said “Of course! Let’s do this!” So, away I went under general sedation for about 2 hours.
This was an arthroscopic procedure. I have 6 very tiny incisions scattered across my lower back where he “fixed” the spine. I was semi-conscious for it and while there were little pain points, overall it was very easy.
My recovery has been going fine. I’m feeling quite good. No pain meds needed so that has been really nice. I’m still taking some steroids and muscle relaxers.
I’m taking very short walks on the treadmill, trying to find the balance between moving and not overdoing it.
It seems like I still have a little tingling and slight discomfort in my leg (that nerve pain is caused by the spine). I’m optimistic that it will resolve soon.
For better or worse, I have work travel next week. I cannot lift anything more than 10 pounds so I will be very creative! It turns out Glen is also traveling and our flights align so I can lean on him a bit for some help with baggage.
My regular oncology appointment is not until mid-June. I don’t expect anything other than a standard quick check to make sure my bloodwork looks fine and I can continue my medication.
Hopefully by then I’ll be walking outside. Also hopefully by then this cool, rainy weather pattern we’ve been having in Colorado will break and I can enjoy a little vitamin D!
Wherever you are, I hope your summer is off to a good start. Get outside and enjoy that sunshine and fresh air!
The garden is loving the rain but it’s not very pleasant for sitting outside.
“We do not need to change treatment plans at this time.” Music from oncologist Dr. Andorsky’s mouth to my ears this morning! What does this mean? My CT scan showed no progression of cancer, things are stable.
So, we carry on!
The one thing that did show up on my CT scan was the hot mess that my L4 vertebrae is, including a new compression fracture. I’ve not been feeling well since my fall in April and my oncologist was a bit worried this might have been due to progression. It appears that the pain is all related to my fall.
This of course is fantastic news and quite a relief. Is a CT scan absolutely definitive? No, it is not. It is a bit of an art to monitor terminal cancer. This being said, we have as much data as possible and so I’m confident we are on the right path.
My oncologist was very happy with how things are going and I think he was a bit relieved to see me in better spirits.
The reason for my better spirits – besides a stable scan – is that I’ve been able to keep my pain under control and I feel like I’m getting stronger. I can walk unassisted (no cane). I can walk more confidently both up and down stairs. I have not resumed longer walks or walks outside. I’m staying on the treadmill and trying to increase my length and endurance.
We have a plan to hopefully eliminate the pain!
On Thursday, June 1, I am scheduled to undergo an outpatient procedure to fix the compression fracture on my L4 (a kyphoplasty). Basically, they will go in, guided by imaging, and place a little balloon where the fracture is, lift up the vertebrae and inject some cement so that the vertebrae is not compressed.
The pain I currently have is mostly nerve-related pain in my leg. It’s decreased with my medication, but is definitely still there. I am very optimistic that this procedure will help and I’ll be back walking on the trails by mid-June! Cross your fingers with me!
And also please celebrate with me. Living with Metastatic Breast Cancer is stressful and my family and I live in 3 month increments. This provides just a tiny bit of breathing room and will make for a fantastic summer.
I always have a plan for when I get my CT scan results. Today’s treat was a fancy iced coffee.
Hello there everyone. My cancer update for April is boring. Just continuing on with the current treatment. My bloodwork tumor markers dropped a little which is very good. Otherwise, we just stay the course until I have scans again in June or July. The scans are how they determine if the cancer is progressing. Of course if I feel like my health is taking a turn for the worse, we would move those up. I’m still on my second line of treatment (since June 2022):
Fulvestrant shots (monthly)
Lupron shot (monthly)
Ibrance capsule (daily)
Zometa IV infusions (quarterly)
~~~~
Health/life-related update: The last month has been rough. I share this not in the spirit of complaining – I want to shine a light on the challenges of the way the for-profit American health care system is set up. As I advocate for myself it requires many phone calls, appointments, treatments and medications – all under the authority of the insurance company. The system puts absolutely all the responsibility for care on the patient, which works ok if you are not very ill. There is no central coordination. Every decision I make has to be considered with regard to insurance. The insurance company is dictating my care. Frankly we need a single-payer system which is not perfect but would address the vast majority of the challenges encountered. We are the ONLY country in the world with this kind of system. It is not the best, it’s not even passable any longer.
I know friends and family that are going to through similar challenges. I’m trying to figure out how to affect some change in the system.
I am grateful (and slightly annoyed) that my medical team finally connected me with a “stealth” nurse navigator (their word, not mine). During my appointment last Wednesday it was apparent that my mental health was in the toilet and I could not manage “all the things”.
Historically, I’ve had zero luck with nurse navigators. “Stacy,” however, is a nurse navigator they send patients to when everything has really fallen apart. Grateful because she was amazing, dealing with and resolving almost all the challenges within 24 hours. Annoyed because the best and most efficient staff should not be some secret that they don’t share with patients until their situation has become completely untenable.
The list of challenges I’ve been facing is too long to share. (No one other than your mother wants to hear all the detail – right mom?)
I’m trying to keep my sanity in check and one of the things I managed to make happen was to have Glen and the girls fly out to join me in Pasadena. I was on a work trip and it was spring break week for both girls.
I’m grateful for the few days we got to explore together. I also managed to squeeze in dinner with my bestie – which was too short but better than nothing at all.
In spite of the shit-show of cancer and all the related struggles, life is a gift. Make the most of it however you can.
Reunited (elevator mirror!); Super quick visit with Laura and stopped to see Jordan; I walked past Pasadena City Hall everyday on my way to the event; Glen & the girls hit Universal Studios; Obligatory visit to the Rose Bowl; Walking along the beach in Santa Monica
Life As I Know It 