LifeAsIKnowIt – Page 3 – Life As I Know It

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!

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!

☀️ More Radiation ☢️

Happy New Year!

I hope the new year is treating you well. We were fortunate to be able to spend time with family in Wisconsin and then Rob, Paul and Cara came out to do some skiing over New Years. Escaping to the mountains and Winter Park is always a good time!

It’s been sunny here – pretty typical for Colorado. I love the sun so I celebrated the winter solstice and the increase of solar radiation 🌞. I’m very happy the sunset continues to move later and later into the evening.

While I welcome more radiation from the Sun, I’m less thrilled with the fact that I will need to have some medical radiation ☢️. New pain developed in my left hip and leg a few days after Christmas. After an MRI and appointment with my neurosurgeon, we’ve confirmed the pain is real and related to progression of the cancer.

It looks like the L4 and L5 vertebrae are growing more tumor. Recall in October I had surgery to remove tumor on my L4 and L5 that was pinching my spinal cord. It’s grown back. It also looks like my S1 vertebrae (sacrum, just below the lumbar region) has notable progression. This is new cancer activity. Clearly the cancer is active and has grown back over the past 2 months.

I stopped taking Ibrance in September, I continued to receive Fulvestrant shots through early November. I started taking Xeloda (oral chemotherapy) in December. I continue to take Xeloda.

So, the cancer is active and we need to figure out how to stop it. The best path forward is to stay on my medicine so it has the opportunity to get the cancer under control.

Surgery would require me to stop my cancer medication. That’s not a great option because this would allow the cancer to continue to grow. My medical team has told me radiation is the best option.

At this point I’m waiting for the cancer center to call me to set up the appointments. I will have an initial appointment where they plan out what they are going to do and then I will go to the cancer center daily for the radiation treatment.

I’m grateful I have an option other than surgery and I’m looking forward to working with the radiation team to get started. In the meantime I’ll be working as I can and aiming to keep moving. My physical therapist has given me many good exercises and I’ve ordered some walking poles specifically designed for recovery. The poles should arrive this coming week and I’ll be getting outside as soon as I can with them. (Neighbors, if you see me, come on out and join me – I’d love the company.)

I hope that you all are having a great month and are doing all the things that make you happy and that are good for you.

Onward!

Drive up to Winter Park. Rob drove and the 17 yr olds rode with us

Farewell 2023

This is likely my last post for the year, and what a year it has been!

December has been eventful, not necessarily in the way I’d hoped. I started my new treatment medication. It’s an oral medication taken twice a day (Xeloda). The initial regimen was 14 days taking meds and then 7 days off. Long story short, I had terrible side effects. I don’t recall the last time I felt that sick.

In these cases the first thing to do is to reach out to the medical team and let them know so they can help. We decided to change the schedule so I take the meds 7 days and then have 7 days off. Hopefully this will lessen the side effects. If it does not, the next option is to lower the dose.

My medical team is wonderful in many ways, I’ve mentioned this before. Most recently they agreed that it was not a problem to pause the medication until January 1 so that I can spend time over the holidays without the risk of getting really sick. I very much appreciate that!

We will travel to Wisconsin to spend time with family and we will visit a few friends. There is never enough time to see everyone.

A few days after Thanksgiving my dad passed away. His memorial service will be on December 27. We will head back home to Colorado after that. My dad wanted any remembrance of him to be in the form of donations to METAvivor (the only organization that uses 100% of money raised to support research for metastatic breast cancer). If you are so inclined, you can make a donation in his honor by going to METAvivor.org, select ‘donate’ from the upper right. When you fill out the form you can check the box to dedicate the donation to the memory of someone. If you prefer to send a check, there is an address at the bottom of the page.

Wishing you all a calm and peaceful end to 2023. I hope that in 2024 you find and make your own happiness. Be kind to one another and live life each and every day.

Onward!

In case you thought Colorado winters were cold, not on your average day!

December 2023 Update

It’s December – a month I love because of all the holiday decorations, music, and it feels like most people are in a cheerful mood.

I’ve been home from rehab a bit over a week. My pain is not too bad, minimal due to the pain meds; my right hip is still cranky and giving me a hard time. I walk with the cane around 75% of the time.

I had 2 medical appointments last week.

The neurosurgeon took my stitches out, said I’m healing really well. I need to wear the brace for another 3 weeks.

The oncologist said I can start my new treatment so I started those meds on Friday, December 1. It is an oral chemotherapy (Xeloda). I take 3 capsules in the morning and 3 in the evening after meals. So far no notable side effects, but frankly it’s probably too early to tell.

It’s been hard to arrange follow up physical therapy. I can’t drive so need someone to come to the house. My first session will be next Friday.

Maddy had her annual holiday dance recital (photo is courtesy of the dance studio’s social media). It was great to get out and see her dance. It was a stressful evening though for me and uncomfortable to sit for so long. My recovery on Saturday was rough. I’m glad I went though – she and her friends are amazing dancers and I love to watch her do what she loves.

Maddy is in the back left, although challenging to find. This is the entire dance company and students taking recreational dance classes.

I transitioned back to work last Monday. I’m working a few hours and then taking a break. It’s a desk/computer job so I can work from anywhere in the house that is most comfortable. I enjoy work because it gives me something else to think about.

I’m a “let’s get those holiday decorations up the day after Thanksgiving” kind of gal. Glen is a hard-core “no holiday decorations until 12/1.” So, given that I can’t do much, he put some decorations up yesterday. One of the best parts is our favorite coffee mugs come out.

This month I’ll continue to work and recover. Glen has a few work trips coming up so I’ll rely on Maddy and my lovely support network for any groceries and things I might need (it’s tough not to be independent). Holiday shopping online this year (bleh) will happen. I’ll try to catch up with a few MBC friends and head back to the oncologist and surgeon in a few weeks.

Get out there and support your local stores and shops (counter-act all my Amazon buying) and enjoy the holidays, whichever you celebrate.

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!