Surgery – 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!

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!

No place like home

There’s no place like home for the holidays 🎶.

I am very happy that I will be going home tomorrow (Wednesday 11/22) and can spend the Thanksgiving holiday with Glen, Evelyn and Maddy.

The other thing I am happy about is this morning (Tuesday) they cleared me to be “independent” which means I can get up and move about the room, use the restroom on my on and so on. No more calling the nurses for everything.

I’ll have spent a week in rehab when all is said and done. Was it a good choice to come here? Probably. The way the assessments run, the day of the week I arrived, and other factors meant that I probably was here a few more days than I needed to be but it’s fine.

I will continue to walk with the support of a cane. I have to wear a “CTO” brace. It’s a cervical brace that stabilizes my neck and connects all the way down to a belt. Not gonna lie, not very comfortable. I can take it off if I am lying down or inclined less than 45 degrees. I am not sure how long I have to wear the brace, likely up to 6 weeks post-surgery.

I don’t have much pain, partially because I am still on narcotics (oxycodone). There is minor discomfort in my upper back between my shoulder blades where they did the surgery.

The fabulous news though is that all the previous pain I had is gone so the surgery did indeed relieve the pressure on my spinal cord. I no longer have any numbness in my torso or legs.

So, hopefully this surgery and the one last month on my lower back have taken care of any pesky tumors. I just need to get my strength back up.

Next week I will meet with my oncologist and pending clearance from the surgeon and how my bloodwork looks, I may start my next line of treatment. The surgeon and oncologist will consult to determine if I’m strong enough to start the meds. I had major surgery and they want to make sure I’m strong enough to handle a new drug. The medication is an oral chemo called Xeloda (“Za-low-da”) (Capecitabine).

Overall, I’m looking forward to going home, a bit anxious about the next line of treatment, and will need to figure out a plan to return to work. My company has been absolutely fabulous. I basically called my boss the day I needed to go to the ER and told her the situation, she said “we’ve got you covered, go take care of yourself”.

It will be the four of us for the holiday. Making some food, watching some football, maybe working on a puzzle. I’ll be pushing for getting some Christmas decorations out, not sure how successful I’ll be.

I hope you all have a lovely, long weekend whatever you decide to do.

They tried to make me to go rehab and I said yes, yes, yes!

Unlike Amy Winehouse, I was more than happy to move from the hospital to a rehabilitation facility. That happened today. I’m glad to be done with IVs and continuous heart monitoring.

I was in the hospital a little over a week. Everyone there was helpful and professional. I was there long enough, and feeling well enough that they got to know me a little which was nice.

Today they officially waved goodbye. I had a transport van move me in a wheelchair to Broomfield Hospital in Broomfield, just down the road from us.

The transport van had a ramp for a wheelchair and they secured it down before the short (20 min) drive. Unfortunately, I didn’t have any decent clothes to change in to so I felt just as disheveled as I look.

The third floor is a rehabilitation facility. I landed here late afternoon. Just enough time to get some dinner and answer a huge list of questions.

Glen will bring me a bag of clothes, pjs, toiletries tonight. The goal while I’m here is to get me as independent as possible and ready to walk back in the door at home and just live life.

How long will this take? Unclear. I have decent strength, which is a plus for me. I don’t know how well I can do things so I suspect there will be an assessment and then each day we will work to get me ready to be home.

I’m looking forward to getting started.

Related to my surgery – I will go see the surgeons assistant next week or just after the holiday. She will reassess my brace and see if she can lift any of the restrictions I have for movement.

Related to my cancer – I have an appointment with my oncologist after the Thanksgiving holiday. We will look at starting a new treatment line then. The treatment is an oral chemo which can be hard on the immune system. It is a delicate balance to start a new treatment when you are trying to recover from surgery.

I have full confidence in my medical team and will go with their recommendations. I’m thankful for friends far away and also close by. For lovely gifts to pass time in the hospital and visits with good coffee to do the same.

In the meantime it’s one day at a time. Get out there and get some fresh air on my behalf. Love to all.

Onward!

View out my window from the rehab facility

More Back Surgery Needed

My lower back surgery was successful! I no longer have pain in my hip and leg. So grateful!

Unfortunately, about a week after my surgery I developed significant pain in my upper back that would migrate to my chest. It’s gotten progressively worse. I’ve been meeting and talking with both my oncologist and my surgeon over the past few weeks.

Results of an MRI from last week shows that I have tumors pressing on my T3 vertebrae which is located between my shoulder blades. Pain mystery solved!

The tumors are pressing on both sides of my spinal cord, squishing it into an hour glass shape. Not what we want. The surgeon is aiming for surgery ASAP to do the same procedure (laminectomy) on the T3. Surgery is not scheduled at this time and should happen within the next 2 weeks.

I’m comfortable with this plan and have 100% confidence in the surgeon. I am hoping for the soonest possible date for surgery!

During this time I am not receiving any treatment for my cancer, which is nerve wracking. So, the sooner we can get this done, the sooner I can start my new medication. Obviously the medication I was on stopped working so we cross off that treatment line and move to the next.

Having metastatic breast cancer (MBC) to the bones only is “good”. Much better than when visceral organs become involved (lungs, liver, brain). However, there is no good MBC. I mentioned previously some of the complications bone mets can cause, I think I left off paralysis. So, while I am confident my medical team will get me fixed up as soon and as best as possible, the reality of what I and my family are facing is daunting.

A huge thank you to friends who have provided meals, conversation, brought coffee and other gifts and especially to Amy for driving me to medical appointments in Denver when Glen can’t do it.

We can’t do this cancer thing without you and are so very grateful.

If you are feeling a little helpless and can spare a buck (or twenty) it’s not too late to donate to my fund raiser for research toward new treatments of MBC. https://donate.metavivor.org/fundraiser/4523169

And as always a few photos of the past month. Be well my friends. Onward!

Surgeon check in

I’m almost 2 weeks out from surgery. This morning Glen and I met with the surgeon. He is pleased with everything. Importantly, it appears as though this procedure has eliminated my leg and hip pain! I can start moving around a bit more, but no Cross Fit, per the surgeon. 😀 The tumors were sent off to pathology, there were no results as of this morning.

About a week ago I started to get a pain in my upper back / neck and it’s gotten progressively worse. So much so that I ended up going to the Emergency Room on the advice of my nurse navigator.

The good news is that anything life threatening was ruled out: heart is fine and there are no blood clots. Also good is that mornings are least painful and sometimes I can control it with medications (muscle relaxer and oxycodone).

It’s not clear what is causing the pain and all the medical professionals are scratching their heads a little bit. The surgeon ordered an MRI for next week and I’ll see him again in early November.

Meanwhile this weekend we had a fun weekend of mini-golf and pizza. Last weekend Maddy celebrated Homecoming. Gotta squeeze in the fun of life wherever you can.

Post-op Report

Two days ago I had back surgery, a laminectomy with tumor recession to be exact. The surgeon removed part of my L3 and L4 vertebrae to relieve pressure on my spinal cord. It looks as if there was tumor pressing on the cord. The tumor was removed, along with bone, and sent off to pathology. It will take around 2 weeks to get pathology results.

A general diagram of the procedure I had on L3 and L4.

The procedure was about 2 hours and there were no complications. My recovery was fine and I opted to stay one night in the hospital.

For two weeks I cannot bend, twist or lift anything 10 lbs or heavier. Before I was released both physical and occupational therapy came by to help me navigate stairs and getting dressed. I’m feeling confident that things will go fine, although I will need to rely on Glen and Maddy a lot.

I don’t have much pain right now, probably because I’m taking 20mg of oxycodone every 4 hours! I had a restful night at home and the cat snuggled up next to me. He missed me!

I have a post-op appointment in 2 weeks and hopefully some of my restrictions will be lifted. If I’m feeling better by next week I’ll go back to work. I work remotely and have a lot of control over my schedule so I’m not too concerned about that.

Thank you for all the messages, flowers and texts. I really felt the love and cannot express how much that meant to me. I was very nervous going into this – who wouldn’t when they are messing around near your spine! Your reaching out really helped calm my nerves so thank you for doing that!

Evelyn will come home this weekend to help out. I am looking forward to that. Maddy has homecoming this weekend and so we won’t see much of her! Life continues on!

Gorgeous orchid from my secret admirer (Nancy)

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!

My Top 5 Breast Cancer Organizations

October is Breast Cancer Awareness Month (BCAM) and it’s always a good reminder to be cautious about how you might support breast cancer.

Many organizations jump on the pink bandwagon and very little if any of your donation goes to support patients or research.

Your best bet for supporting breast cancer is to donate to a reputable organization. My favorite are those that focus on research. Research is how we get new treatments and hopefully a cure.

I posted these last year and share them again. Some of these organizations also have a focus on Metastatic Breast Cancer (MBC). Recall that MBC is the *only* breast cancer that kills, yet receives much less funding that earlier stage, curable breast cancer. Reach out if you want more info. I could talk all day long about this!

Breast Cancer Research Fund: Dedicated to ending breast cancer through support of research; 41% of their research dollars go toward MBC ($21.6 million annually).
Metavivor: The only organization dedicated to only MBC research and support. 100% of funds raised go toward MBC research. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up on October 13 in the colors of MBC (teal, green and pink). I am raising money for the #LightUpMBC campaign, you can view my fundraising page here.
Lobular Breast Cancer Alliance: Alliance of organizations, doctors, patients, and allies dedicated to learning more about lobular breast cancer. Invasive lobular breast cancer typically does not form a lump and is difficult to detect on imaging, so difficult to diagnose. I have invasive lobular breast cancer.
Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40. I participated in advocacy training (Hear My Voice) led by Living Beyond Breast Cancer.
Young Survival Coalition: Focused on supporting young adults (<40 years old) diagnosed with breast cancer. (I was first diagnosed when I was 39 and this organization was a life line.)