Updates – Page 3 – Life As I Know It

❄️ 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!

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

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.

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.)

7 am check in time for a 7:30 PET scan. No coffee allowed before the scan. So glad they have early morning appointments!

MBC – the “gift” that keeps on giving

Happy September friends and family.

I feel like I missed summer so I’m being intentional about eating lunch outside in the sun! I hope you are still getting outside now and again to get some fresh air and vitamin D.

This past week was a busy one medical-wise. I had my regular monthly appointments. Additionally I had an MRI on my lumbar spine region (lower back) and met with a neuro-oncologist.

My medical oncologist is lowering the dose of one of my medications (Ibrance). There are 3 dose levels. I’ve been on this highest dose for 4 years. Apparently after being on it for that long it is common for white blood cells to start to tank (neutrophils specifically). So, I will go to the next lower dosage. It should not affect the efficacy of the treatment.

It’s interesting that the default is to start patients on the highest tolerable dose of a drug and then lower the dosage when there are side effects or complications. There is a group of patient advocates that are trying to change this so doctors don’t default to the highest dose to start.

Anyway, this change should not affect my treatment. The change will happen next month.

The neuro-oncologist believes he has found the source of my nerve pain. It appears that I have tumor on both the L3 and L4 vertebrae. The tumors are on the inside of the vertebrae and pushing on the spinal cord. That is what is generating the nerve pain in my hip and leg.

His recommendation (which I will follow) is that he do surgery to remove the tumor material. It’s not scheduled yet, hopefully will happen within 2-3 weeks.

We don’t know if the tumors are new or if they are “old” and just got pushed/moved around. The first step will be to get me out of constant pain. The second will be for my oncologist to determine if the cancer has awakened or is still sleeping. I won’t have that information until early October.

With Metastatic Breast Cancer (MBC) the cancer spreads beyond the breast. I have bone only disease. This is good in that bone only disease does not kill you. However, it can mess you up royally. The cancer in my spine has now made it very difficult to walk. The current nerve pain only allows me to lay and sleep on my left side. It’s possible though that the bone disease can cause incontinence and other very unpleasant things. So, when I say “Things could be worse.” They could, indeed.

Maddy has started her junior year of HS and a new year of dance. Evelyn is moved in to her apartment and in the thick of classes as a sophomore at University of Colorado Boulder. (She is VERY excited for the football game tomorrow! Look for her on tv.) Glen finished his fly fishing trip and will be traveling for work next week.

I have work travel scheduled (which will likely be cancelled). I also am/was planning to go to a breast cancer symposium in Pittsburgh, attending as a patient advocate. We will see how all this travel shakes out with impending surgery. I don’t have a great feeling about this travel happening either.

This back surgery is a bump in the road. One thing at a time. Thanks to everyone for your support and love. Right back at ‘ cha!

We take our spine for granted! Stop doing that!

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.

Four years of MBC

In my head July 19, 2019 was the day I got the stage 4 diagnosis. Turns out it was actually July 18. No matter. The 19th was the first full day living with this reality.

It’s been four years. Probably closer to 5 given misdiagnosis.

I’m on my second line of treatment. For that I’m extremely grateful.

Is my life what I thought it would be at 54 years old? Absolutely not. Is my life good? Absolutely!

I’m a planner and have always had a Plan A, Plan B, and Plan C. Never was stage 4 cancer in the plan, but alas, here it is.

Don’t get me wrong, the whole thing sucks. There is no silver lining. There are no lessons learned. I didn’t get some grand awakening that made me appreciate my life more. Me and my family just had to pivot and find a new path forward.

I’m on my second treatment line of medication. That means that I was taking medication that stopped working and had to switch to new meds. Cancer is crafty and can figure how to outsmart the medication.

Fortunately, science is amazing and research is literally life saving.

If you have the means please consider supporting my fundraising for more research into MBC treatments. Even if I am not able to benefit, those who, unfortunately, come after me will.

https://donate.metavivor.org/fundraiser/4523169