Hip – 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!

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!

Knowledge is Power 🧐 💪

May 4, 2024

Hello everyone and happy May! I feel like I can’t pass on saying May the Fourth Be with You, even though I’m not big into Star Wars.

I do feel like this is a good news post. I have information from both a PET/CT scan of my entire body and an MRI scan of my lower back.

I have a fracture in my hip that was not caused by a fall or any kind of trauma. It just developed because my bones are weak. The fracture is right in the ball of the hip joint (the acetabulum) where the femur connects. Every time I stand up the femur pushes on the acetabulum where the fracture is, causing pain.

So, my cranky hip is not progression from cancer. Yay!

My tumor marker numbers look good. Last month was 94, last week it was 102. I’ll take it, it’s much lower than the 800 I had in January! 38 and lower means no active cancer. For now, I’d like lower but will be patient!

All smiles because the cancer is under control, for now!

Now the longer version. Stop reading here if you only wanted the basics.

My main oncologist is calling the orthopedic oncologist that did my hip stabilization procedure back in December 2022 to ask if there might be anything he can do. Still waiting on that.

I had my 5th infusion of Enhertu, which is an IV chemo. At this point my side effects are mild and manageable with a combination of my being kind to myself and medication. I don’t have major hair loss, just some shedding. I have some numbness in my fingers now and again (neuropathy). I get the hiccups a lot. Sometimes so loud and violently that they wake me up; sometimes Glen has to go sleep elsewhere because they just don’t stop. The biggest issue has been nausea and vomiting. I think I have that managed by medications, we shall see.

I am feeling very, very grateful as many people do not tolerate these drugs as well as I have.

Back to my hip. I’ll be mainly working with my physical therapist now to get me stronger and get some cardio going. He explained today that unless we can do something with the hip fracture, I probably need to accept that an assistive walking device, like my cane, is a part of my future.

I’ve got a home exercise plan for weight training and other exercises to improve my balance and all that fun stuff. I need to get cardio into the mix so I’ll start with our home treadmill. Ultimately, I’d like to get to the pool to do some walking and other exercises in a non-stress environment.

My goal is to be able to walk outside on the trails by July. I’ll need more strength and stamina and I’m really excited about working to reach this goal. I’ve really missed getting out of the house.

I’m still on a ton of pain medication, including the fentanyl patch. It helps tremendously and I don’t notice any impairment from it, yet I’ve avoided driving as much as possible. That makes life rather difficult but not impossible.

In non-cancer updates – Evelyn is finishing up her semester exams of her sophomore year at CU Boulder. She will live at home this summer because she got an internship (in mechanical engineering) at a company across the street from our neighborhood!

Maddy is wrapping up Junior year and some IB (International Baccalaureate) testing. She just had her last dance competition of this year, now auditions for next year and the spring recital. If you are local and want to join me at any of her recitals let me know.

Glen is busy with work and enjoying the warmer weather. He’s back to running in the foothills, especially on the weekend. He is currently outside working on the gardens. Glen and Maddy did some campus tours in the LA region earlier this spring.

I’m keeping myself busy with work and working on strengthening the local MBC network that I started. Overall I’m feeling better so it’s been a blessing and a curse that I want to do more and need to not overdo it, which I have a tendency to do.

I’m hoping to make a trip to Wisconsin in the early part of summer and of course would love to connect with many of you. I’ll share plans once they are made.

Be well my friends. Get out there and live every day as if it were your last.

Onward!

Toulouse is officially a lap cat as this is a rare sighting with Glen

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!

❄️ 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!

Onward! New meds and surgery

Lots going on here so I’ll try to summarize for those trying to keep up.

Surgery. I still have continual pain in my lower back, right hip and leg. It’s debilitating and very frustrating to deal with and try to control. An MRI of my lower back shows that I have tumor pushing on my spinal cord. It’s not clear if this tumor is “new” or “old”.

The surgeon (neuro-oncologist) is recommending a laminectomy and tumor “rescission”. He will go in and remove part of 2 of my vertebrae as well as any cancer tumors he sees there. He is very confident this will eliminate my pain (🤞). Note: I find surgeons to be over confident in general.

Surgery is scheduled for Wednesday October 4. I will stay one night in the hospital. I should be up and walking about the same day.

New Meds. The results of my PET scan show the cancer is still limited to my bones (no visceral organs). This is very good! It also looks as though I have been having very slow progression over the past year.

My oncologist wants to stay ahead of the cancer (me too!) and recommends switching medication. I have already stopped taking Ibrance and in late October I will switch to Xeloda (z-low-da). These oral meds are taken twice a day for two weeks and then a week off.

I had a great run with Ibrance – over 4 years and 50+ medication cycles!

I know several other women on Xeloda so there is a support network to plug in to. I’m hoping my side effects are minimal and that my cancer hates this medication!

I will keep taking Xeloda until it stops working. This is determined by doing scans and comparing them to previous scans.

Today I will see my primary care physician to have him sign off that I’m healthy enough to have surgery. Then I’ll be calling my insurance company to see where approval for the surgery is.

Other than all of this, it’s a typical fall day here in Colorado with leaves starting to turn, lots of sunshine, and a high in the mid-80s. I’m looking forward to getting my back/hip/leg in order so I can go out and walk again. Take a walk for me – short or long – and send me a photo.

Bye bye Ibrance. You served me well, I’m still disappointed that you failed me. Do better, medicine!

Non-cancer update

I am dropping a note but it’s not exactly cancer related. I’ve had pain and discomfort in my lower back and right leg since April when I had a bad fall. I’ve had 2 procedures since then to try to resolve the issue, with no luck.

I’ve been referred to a neuro-oncologist. Amazingly I was able to get an appointment for this week! So, I will go to meet with him (Dr. “Eddie” as he is referred to) and see what he has to say.

Those of you who have been dealing with chronic pain, I salute you. This is no joke, for sure.

In spite of that, I’m trying to make the best of the last days of summer. It’s been raining quite a bit here so my time sitting outside is a bit limited. Fortunately, we have big windows that look out on to the back yard filled with flowers.

In other news, Glen is wrapping up his annual fly fishing trip in southern Colorado. Evelyn is moved in to her first apartment. Maddy started her junior year and lasted 2 days before she came down with COVID. She missed the entire first full week of school, she also developed an ear infection. She is on the mend now, but it’s slow. No first day of school photos this year either. I have my regular oncology appointment next week (labs, office visit, treatment shots).

Our lovely cat, Toulouse, really needs a companion. I’m planning on visiting the local humane societies on a day when I can get my discomfort under sufficient control.

It’s hard to believe it’s almost September, I hope you are making the most of each day and your summer has been one filled with fun and making new memories.