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!
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
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 usRocky Mountains – near Berthoed PassAlmost to Winter ParkPuzzle MastersSki bumsDrive home, Glen and Rob are cut out of the photo.
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!Annual family photo at the Nutcracker Ballet in DenverEven Toulouse enjoys December sunrisesWaiting for the nutcracker to start.
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.
Xeloda capsules are pretty large!
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.
Morning coffee and the holiday spirit.
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.
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 facilityMy lovelies.Maddy was gracious enough to open her birthday presents at the hospital. Fantastic friends know the perfect gift for long hospital stays.
Hi everyone, this blog post is written by a celebrity guest, Evelyn Romine, daughter of the beautiful Donna Charlevoix. I am here to inform you of the current updates with my mom’s medical situation. My grammar and writing ability may not be at the same level as my mom’s, but I’ll do my best.
On Wednesday, November 8th, my mom went to the local medical center in Boulder, where she receives most of her treatment. This visit was an effort to get the current surgery to remove the tumor on the T3 moved up to a sooner date (initially scheduled for November 20th at the Swedish Medical Center). The pain had become more severe, and after an increasing feeling of numbness in her torso, the concern of her medical team shifted to paralysis. After multiple appointments, she was instructed to go home, clean up, pack a bag, and check into the Emergency Room at the Boulder Medical Center later that afternoon, as the surgery would be performed at that location on Friday. This was for a few reasons: 1) this would allow the insurance to go through on time for the surgery. 2) with her at the medical center, they could better monitor and help with her pain.
I did not get to see her on Wednesday when she checked in, but my dad and sister were there with her for that process. She was in the ER in a bed until 11 pm that night when they were fortunately able to move to an ICU overflow room that was bigger and, from my understanding, comfier (more pillows!!). I visited her on Thursday morning, and she was in pretty good spirits. I think that not having the stress of having to take care of herself and manage everything on her own was lifting a huge burden. (I also know that she’s a warrior and was doing her best to stay positive for everyone).
The plan on Thursday was to prepare for surgery. She was relocated to a new room that was on the first floor (the oncology section). Not too much happened on Thursday, but you could consider Friday to be quite a bit more action-packed. My dad went down on Friday morning to be with her before the operation, yay dad! However, (as per usual) they were running behind, so she didn’t get into the OR until after noon. While the surgery was similar to the last one on the L4 and L5, this one was much more extensive. The last tumor was coming into the spine from the side of this skin, whereas this stupid little bugger was in more of an hourglass shape. The tumor had almost completely rotted away the T3, meaning that a majority of it had to be removed. Because of this, they also had to put in pins and plates which are braced by the T2 and T4 to stabilize the area. The surgery was around 4 hours from my understanding.
I arrived at the hospital before 5 pm and when I got there, my dad had already been there waiting. My sister arrived a bit later and the three of us hung out in the waiting room for a while. They didn’t let us see her for a few hours because she was having trouble with nausea in the wake-up process. Because of the scale of this surgery, she’s staying in the step-down ICU unit. When fe finally got to see her she was feeling okay pain-wise, and all things considered was looking pretty good! The surgery went fine. They were able to remove a good amount of the tumor. Unfortunately, they couldn’t get it all because it had wrapped around her spine, making it too difficult to reach. From my understanding, the surgeon was pleased with how it went. Post-surgery, she will have to wear a neck brace (pictured below) for 6 weeks. Another important doctor order is NO BLT!! (Bending, lifting, twisting – sandwiches are still on the table!). The brace should help with this.
Today, Saturday, November 11th, it’s not looking like she’ll be out of here soon. My dad and I are predicting Tuesday at the earliest. From my time with her today she’s seemed okay as well. I was able to help her get some food, and apparently, the hospital food isn’t too bad (there’s an extensive menu). A popular item for her has been the apple crisp! Yum! This morning she got fitted for the custom brace and has been rocking it like a champ. Physical therapy came this afternoon, and she was able to sit up for the first time. Woohoo! Not only sit up but stand as well! She hasn’t moved yet, so maybe standing a few times and walking is tomorrow’s goal. Her blood pressure during these movements was quite low, and she was having a hard time breathing, so that wasn’t what we wanted. But, in all fairness, she’s being given a significant amount of drugs, and her body is probably very confused after all the, pardon my French, shit it’s been through.
Throughout this whole process, I’ve been really impressed with her optimism and forward thinking. She trusts science and believes that she’ll be feeling better soon (I, along with my family, believe this too). She has always been the woman I look up to the most, and I know as nasty as this cancer gets, she will continue to fight. This whole situation sucks. Like actually sucks so so bad. But I’m speaking for GDEM (Glen Donna Evelyn and Maddy) when I say thank you to the people who have sent love and support. It’s allowed our family to continue functioning in these quite frankly grim times and means a lot.
The goal is that hopefully this message can answer some questions so my mom doesn’t have to go through as much mental effort answering everyone. You are so awesome if you’ve made it to the end of this email, and I hope whoever may be reading this has a wonderful day. Okay, this is the end of my short novella, so goodbye :).
Wednesday night in the ERWonderful friends sent flowers pre-surgeryFirst picture post-surgeryHospital meal (feat apple crisp top right)Neck brace
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.
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!
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!
Life As I Know It 