I’m happy to share that my cancer seems to be quiet and stable. I’ll take this.
I had scans 2 days ago and appointments today with my oncologist and for treatment. The CT scan identified something on my sternum but it can’t distinguish if it is healed bone or new cancer. Imaging is imperfect.
I have been getting CT scans (with contrast) and a bone scan roughly every 3 months since my diagnosis. I have bone-only disease and it’s hard to get good information from these images.
My oncologist wants to switch me over to PET scans, and he wants to do the next scan in October, two months away. I think he is suspicious of the CT results. Insurance companies don’t like to pay for PET scans but the oncologist is pretty confident he can make a good argument. I’ve only had one PET scan and that was how I was diagnosed with bone metastasis.
My immune system is not great right now – my blood work came back with low neutrophils. So, I have to wait a week to restart my Ibrance. I’ll have more lab work next Wednesday and if it looks better I can restart it. If it comes back the same then he will probably lower the dosage of the medication.
I have been having nerve pain all summer. I had a kypoplasty on June 1; the pain largely continued. I had an epidural steroid injection 2 weeks ago; the pain continues. Since nothing showed up on the CT scan, we can assume it’s not new cancer so I’ll head back to the other doctor to see what we can do.
The nerve pain is from the L4/L5 and extends all the way down my leg which makes walking difficult. I’m trying to get exercise in the warm water pool of the YMCA. It’s been a frustrating summer from a physical standpoint.
In other news, Evelyn is home from Europe and Maddy finished a 2 week, 12-hour per day dance workshop at the University of Colorado. It’s nice to have them both home. Ev will move into her apartment in ~1.5 weeks. Maddy starts her junior year next week. Glen is working a lot and will take time off later this month for an annual fly fishing trip.
However you choose to finish out the summer, I hope it is exactly what you need it to be.
Rockies gameInfusion to strengthen bonesView during treatment
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.
Hello friends and family. Checking in with you all to share I have no big news. That is good!
I had my monthly oncology appointment and things are “fine”. I’m taking my Ibrance (CKD 4/6 inhibitor), I got my shots today (Lupron & Fulvestrant) and I’ll go back in 4 weeks. Such is the life of an MBC patient .
I’m grateful for this. So many friends and acquaintances with MBC are not in a relatively easy place. I acknowledge that life is good right now.
Life is good but not pain free. I had my back procedure on June 1 and I am still having hip and leg pain from the nerve compression by my spine. My physical therapist and acupuncturist pointed out that it will take 4-6 weeks after surgery to feel normal. So, I wait and hope that it all resolves.
My blood work – specifically tumor markers – have been rather erratic, bouncing high and low. Because of this my oncologist said he is going to focus on results from scans and take any blood work information “with a large grain of salt”. I will have scans again in August.
Scan, assess, repeat.
Late last month we were in Galveston, TX for Maddy’s national dance competition. She did amazing and we are super proud. We spent a few days in Steamboat Springs after the Fourth of July and it was very relaxing. I’m grateful for both opportunities.
I hope your summer is shaping up exactly how you’d like it to be. If you get some wanderlust, come on out to Colorado. We have space for you and lots of fun things to do in summer.
National Dance Competition, TexasMaddy placed first for her solo against 40 other dancersFun in Steamboat SpringsWildfilowers near Steamboat Lake, on Ernie’s property
Well friends, modern medicine for the win again. A few days ago I had a back procedure to help stabilize the lower back (lumbar region). Part of the procedure was something that a lot of people get (not cancer specific) – a kypoplasty. It’s basically where there is a compression fracture in your disk and they go in and “decompress” the vertebrae.
I had that done on my L5. When I met with the doctor the morning of the procedure, he explained that the cancer *really* likes my lumbar spine. It had been eating away at the various vertebrae and destabilizing my back.
I do find that every 9 months or so I’ll get crazy back pain that prevents me from doing just about anything. Within a few days it typically resolves. I’m hoping this will solve that problem.
Anyway, he wanted to go in and inject cement into the spaces in my vertebrae to shore them up and give me a lot more core stability. I said “Of course! Let’s do this!” So, away I went under general sedation for about 2 hours.
This was an arthroscopic procedure. I have 6 very tiny incisions scattered across my lower back where he “fixed” the spine. I was semi-conscious for it and while there were little pain points, overall it was very easy.
My recovery has been going fine. I’m feeling quite good. No pain meds needed so that has been really nice. I’m still taking some steroids and muscle relaxers.
I’m taking very short walks on the treadmill, trying to find the balance between moving and not overdoing it.
It seems like I still have a little tingling and slight discomfort in my leg (that nerve pain is caused by the spine). I’m optimistic that it will resolve soon.
For better or worse, I have work travel next week. I cannot lift anything more than 10 pounds so I will be very creative! It turns out Glen is also traveling and our flights align so I can lean on him a bit for some help with baggage.
My regular oncology appointment is not until mid-June. I don’t expect anything other than a standard quick check to make sure my bloodwork looks fine and I can continue my medication.
Hopefully by then I’ll be walking outside. Also hopefully by then this cool, rainy weather pattern we’ve been having in Colorado will break and I can enjoy a little vitamin D!
Wherever you are, I hope your summer is off to a good start. Get outside and enjoy that sunshine and fresh air!
The garden is loving the rain but it’s not very pleasant for sitting outside.
“We do not need to change treatment plans at this time.” Music from oncologist Dr. Andorsky’s mouth to my ears this morning! What does this mean? My CT scan showed no progression of cancer, things are stable.
So, we carry on!
The one thing that did show up on my CT scan was the hot mess that my L4 vertebrae is, including a new compression fracture. I’ve not been feeling well since my fall in April and my oncologist was a bit worried this might have been due to progression. It appears that the pain is all related to my fall.
This of course is fantastic news and quite a relief. Is a CT scan absolutely definitive? No, it is not. It is a bit of an art to monitor terminal cancer. This being said, we have as much data as possible and so I’m confident we are on the right path.
My oncologist was very happy with how things are going and I think he was a bit relieved to see me in better spirits.
The reason for my better spirits – besides a stable scan – is that I’ve been able to keep my pain under control and I feel like I’m getting stronger. I can walk unassisted (no cane). I can walk more confidently both up and down stairs. I have not resumed longer walks or walks outside. I’m staying on the treadmill and trying to increase my length and endurance.
We have a plan to hopefully eliminate the pain!
On Thursday, June 1, I am scheduled to undergo an outpatient procedure to fix the compression fracture on my L4 (a kyphoplasty). Basically, they will go in, guided by imaging, and place a little balloon where the fracture is, lift up the vertebrae and inject some cement so that the vertebrae is not compressed.
The pain I currently have is mostly nerve-related pain in my leg. It’s decreased with my medication, but is definitely still there. I am very optimistic that this procedure will help and I’ll be back walking on the trails by mid-June! Cross your fingers with me!
And also please celebrate with me. Living with Metastatic Breast Cancer is stressful and my family and I live in 3 month increments. This provides just a tiny bit of breathing room and will make for a fantastic summer.
I always have a plan for when I get my CT scan results. Today’s treat was a fancy iced coffee.
Throughout my scientific career, a yearly event is the Annual Conference. All professional societies gather their members once per year to network, share information and, frankly, to make money. (It’s a bit of a secret that societies use these events to help sustain their other activities.) Anyway, annual conferences happen in the breast cancer world too. It’s an important mechanism to bring people together and from the science side, share the latest breakthroughs in treatment and cancer understanding.
Each December in San Antonio is the San Antonio Breast Cancer Symposium – the largest breast cancer-focused conference in the world. There is also the MBC Research Conference, American Society of Clinical Oncology, European Society for Medical Oncology Congress, International Invasive Lobular Breast Cancer Symposium, and may others. (Note: there is really no difference between a symposium and a conference.)
The organization Living Beyond Breast Cancer organizes the Conference on Metastatic Breast Cancer. The focus is bringing together patients living with MBC to share information and educate about how best to take care of ourselves.
I attended the conference virtually in 2020 and was very excited to plan and attend in person this year. The plan was to travel to Philadelphia with a local MBC friend to meet up with hundreds of other women (and men) who are navigating the same ridiculous disease that I am.
There were sessions and talks devoted to mainly to caring for yourself, as well as new treatments and guidance on how to cope with grief.
I was really looking forward to being around so many others who can relate to what I’m going through. I’m heartbroken that we have an annual conference for this. I’m also sad that the vast majority of the 45,000 people in the U.S. who have MBC cannot attend.
It turns out I was not able to attend in person. I did join a few sessions virtually and connected with some women who I hopefully will stay in touch with.
I was crushed not to go. I made the decision at the last moment because I was really hoping to attend and was desperately hoping my pain would go away or at least be manageable.
This past month has been a rough one. I had a bad fall early in April and long story short, it seems to have aggravated part of my spine that was already compromised.
I’ve spent the past few weeks trying to get pain under control and making lots and lots of phone calls to a number of doctors to figure out what is going on.
We now think that the L4 of my spine (lower back, lumbar region) was hurt in the fall and it’s putting pressure on my nerves. I already had a burst fracture of my L4 and now there is likely a compression fracture as well.
Nerves emanate out of the spine and travel to different parts of our bodies, the lower back impacts the legs. The pain I’m having can be traced back to the L4 of my spine.
The current plan is to (1) keep my pain levels manageable (2) get a kyphoplasty procedure done on my L4.
I’ve been laying low for weeks now. Not much more than resting and sleeping and trying to work as I can. The pain meds make me very groggy so it’s been challenging to say the least.
While all that is not very exciting, we wrapped up April with multiple dance competitions for Maddy. We are all thrilled for her finishing in first place with both her solo for her age group and first place for her duo.
Maddy’s solo and duo; all smiles with her placement.
While Maddy was spending countless hours at the studio, Evelyn was wrapping up her freshman year and we got her moved out of her dorm and on a plane to Europe within 24 hours. She will spend some time in England with her boyfriend and study for 8 weeks in Rome, after which she’ll head back to England for a few more weeks.
Moving out of the dorms is relatively easy compared to moving in; Evelyn and Kieron ready to move on from American soil.
I was fortunate to spend a very important afternoon with a dear life-long friend who happened to be in Denver for work. The time was too short, I’m grateful we had those hours nonetheless.
Donna and Amy – friends since we were toddlers – probably before. ❤️
Life marches on, both the good and the bad. The cat is appreciating my new found sedentariness. I’ve not been able to go on walks so I would appreciate photos texted of whatever it is you might be doing outside! Get some fresh air and movement for me!
Daffodils making an appearance; Toulouse is taking advantage of my increased sleep; View from the cancer center infusion room – things are starting to green up.
Hi everyone. Spring is trying to push through here in Colorado and in many places where you live as well, and it hasn’t quite happened. We keep bouncing between sunny and 60 and 35 and snow.
Spring is also the time when the Federal government sets spending priorities for the fiscal year.
I’m asking you to please fill out this simple online form to ask your elected representatives to support increased research funding for metastatic research. (Any metastatic disease is not curable and needs more research!)
Enter your name, address and email and you will be taken to a template for each of your representatives. You will be asked for a “letter topic”. I selected “health care” from the drop down menu.
There is a message already written. You can use the template as is, or personalize it. Go ahead and tell them you know someone with metastatic breast cancer and that there needs to be more funding for research to find a cure! Make it as personal as you can.
Thank you in advance. Requests sent before April 30 will be most impactful.
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The phlox are happy in the sun and don’t seem to mind the snow.
Hello there everyone. My cancer update for April is boring. Just continuing on with the current treatment. My bloodwork tumor markers dropped a little which is very good. Otherwise, we just stay the course until I have scans again in June or July. The scans are how they determine if the cancer is progressing. Of course if I feel like my health is taking a turn for the worse, we would move those up. I’m still on my second line of treatment (since June 2022):
Fulvestrant shots (monthly)
Lupron shot (monthly)
Ibrance capsule (daily)
Zometa IV infusions (quarterly)
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Health/life-related update: The last month has been rough. I share this not in the spirit of complaining – I want to shine a light on the challenges of the way the for-profit American health care system is set up. As I advocate for myself it requires many phone calls, appointments, treatments and medications – all under the authority of the insurance company. The system puts absolutely all the responsibility for care on the patient, which works ok if you are not very ill. There is no central coordination. Every decision I make has to be considered with regard to insurance. The insurance company is dictating my care. Frankly we need a single-payer system which is not perfect but would address the vast majority of the challenges encountered. We are the ONLY country in the world with this kind of system. It is not the best, it’s not even passable any longer.
I know friends and family that are going to through similar challenges. I’m trying to figure out how to affect some change in the system.
I am grateful (and slightly annoyed) that my medical team finally connected me with a “stealth” nurse navigator (their word, not mine). During my appointment last Wednesday it was apparent that my mental health was in the toilet and I could not manage “all the things”.
Historically, I’ve had zero luck with nurse navigators. “Stacy,” however, is a nurse navigator they send patients to when everything has really fallen apart. Grateful because she was amazing, dealing with and resolving almost all the challenges within 24 hours. Annoyed because the best and most efficient staff should not be some secret that they don’t share with patients until their situation has become completely untenable.
The list of challenges I’ve been facing is too long to share. (No one other than your mother wants to hear all the detail – right mom?)
I’m trying to keep my sanity in check and one of the things I managed to make happen was to have Glen and the girls fly out to join me in Pasadena. I was on a work trip and it was spring break week for both girls.
I’m grateful for the few days we got to explore together. I also managed to squeeze in dinner with my bestie – which was too short but better than nothing at all.
In spite of the shit-show of cancer and all the related struggles, life is a gift. Make the most of it however you can.
Reunited (elevator mirror!); Super quick visit with Laura and stopped to see Jordan; I walked past Pasadena City Hall everyday on my way to the event; Glen & the girls hit Universal Studios; Obligatory visit to the Rose Bowl; Walking along the beach in Santa Monica
Here we are again. Another month has passed and I’m posting. I thank you all for reading and for your interest. I hope you also learn a tad bit about this hideous disease and share with others.
But it seems like, yes, another month has passed and there is not much to update. In the grand scheme of life, not much has changed for me. (Side note, my recent scans were “fine” and I continue my current medications. Yay!)
Life is busy. There are things to do, places to go, people to see, and dreams to achieve. One day blends into the next with the punctuation of weekends when we can stand down a bit – unless you are retired. (My retired cousin says ‘everyday is Saturday.’)
Seriously, I feel odd sometimes writing these updates because to many of you, there is probably not a lot of new information.
When I first got this diagnosis it was terrifying to me, and also to my friends and family. Here I am 3 years and 8 months later – still alive, still working full-time, still traveling. Still living like many of you.
And yet. I live in 3 month increments. I have no idea if the table will turn and the next set of scans will be the ones that show the cancer has out smarted the medicine. Will this be the month I have to change my medication – and if I do, will it work? What kind of side effects will it have?
So far, I’ve only had to change medication once. That’s pretty f-ing amazing in almost 3.75 years. Hooray for science!
The internal anxiety I have is always present. I’m able to swallow it a lot because work is distracting. My friends allow me think of other things. Being with my family helps me live in the moment.
Today I met with my oncologist. There was a real possibility I would change meds. He said that with the data he has we should stay the course. So, no change in anything. Same meds.
We talked about what is next. I have two options for treatment (Xeloda or Taxol). When that stops working I’ll go to Enhertu. When that stops working I’ll go to whichever of the ones I didn’t chose (Xeloda or Taxol).
There is no cure for this, just treatment. The idea of changing treatment is terrifying – to be honest. Do I show that? No, because I don’t think about it a lot and there is not point in worrying about something out of my hands.
That doesn’t mean that everything is smooth sailing. It’s just not apparent. I have a lot to do, a lot of plans and a lot of new memories to make.
You have that as well. We just don’t often think about the time when we can’t do it, or when we run out of time.
We all run out of time, some of us just know we have less time that others. Very recently someone Glen and I know died from metastatic breast cancer. She and I communicated via email and she was really supportive when I was first diagnosed. She leaves behind a husband and 8 year old son. Her mortality is my mortality and the same for everyone else with this disease.
This being said, I have supreme confidence in science and am looking forward to annoying you all for many years to come with boring posts of non-information. 😃
This was the first outdoor walk, out of our neighborhood that I’ve done since October. My hip is finally starting to really heal.
View from Sandia Peak in Albuquerque. I was there for work.
Glen and I with cousin Dave and Jill. Fantastic (to short) visit. Explored the University. Colorado campus after brunch and before a hike.
It’s been a busy couple of weeks. I was at the oncologist this past week. Short version: stay the course for this month. Things look “ok”.
Every 3 months I have a CT scan (neck to pelvis) to check on the cancer and see what it might be doing. The results of my CT scan last Monday show nothing remarkable. This is excellent because it means the cancer has not spread. It’s still just hanging out in my bones.
The oncologist ordered a bone scan before my March appointment. The bone scan literally images the bones, toes to top of the skull.
We are a bit worried about the tumor marker from my blood work. The CA 27-29 tumor marker can give an indication if the cancer is active. My value has been slowly rising and then almost doubled last month. This month it dropped almost as much as it rose last month. What does this mean? Unclear. It’s unusual for me to see these big changes so it’s raised some concerns. Tumor markers are not necessarily sufficient on their own to give a picture of what’s going on. The oncologist won’t use this data alone to make decisions. So, we get a bone scan and re-evaluate next month.
I recently wrote about new treatment options for MBC. I was waiting for blood tests to come back to see if Orserdu might be an option. This newly approved medication only works if an ERS1 mutation as developed. I don’t have the mutation, so this drug will not be an option. If I do need to switch medication, the next option is chemotherapy.
These past few weeks have been difficult. In particular I’ve had chronic pain that is tough to deal with, as some of you know. It’s hard for the pain (and MBC) not to take over my life. So, I’ve been focusing on finding balance.
My guess is you are looking for balance too. So many of us are. Too much focus on any one thing in life is unhealthy and yet it’s easy to get swept up.
Thankfully, the past month I was able to enjoy a dance competition Maddy competed in, found a few new shows to watch while walking on the treadmill, met friends for coffee or lunch, and took a long weekend trip to Wisconsin to see some friends and family.
I keep looking carefully at how to spend my time – finding the right mix of fun, rest, and spending time with people who are important to me. I hope you can do the same.
Maddy performing her soloGrade school friendsDinner out in WIDinner in WI – we’re not so great with selfies
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Current treatment: Ibrance, 125 mg (oral) + Fulvestrant (injection) – Prevents cancer cells from dividing + estrogen blocker Lupron (injection) – induces menopause Zometa (infusion) – bone strengthener
Life As I Know It 