Update – Page 3 – Life As I Know It

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!

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!

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!