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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!

Summer update – status quo

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.

~~~

Current meds: Ibrance (oral meds), Fulvestrant (injection), Lupron (injection), Zometa (infusion)

Back stabilization update

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.

Status quo & pain management

“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.

Connecting through Conferences

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.

Asking for your help

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!)

Click here to contact your representatives and ask for increased funding for metastatic 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.

~~~~~~~

The phlox are happy in the sun and don’t seem to mind the snow.

April Update

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)

~~~~

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

No Different Information

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.

~~~~~

Second line of treatment (since June 2022):

Fulvestrant (injection monthly)
Ibrance (oral daily)
Lupron (injection monthly)
Zometa (infusion quarterly)

Looking for Balance

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.

~~~~

Current treatment:
Ibrance, 125 mg (oral) + Fulvestrant (injection) – Prevents cancer cells from dividing + estrogen blocker
Lupron (injection) – induces menopause
Zometa (infusion) – bone strengthener

Graduation tears

This morning was my last radiation treatment. The purpose of the radiation is to knock down any cancer that might be lingering in my hip and pelvis. The radiation does not cure my cancer.

Overall the radiation experience has been pretty straightforward. I only had 10 sessions and I haven’t really noticed any side effects. Fortunately, the treatments are quick and I live pretty close to the cancer center so the impact to my daily routine was minimal.

Radiation is done one person at a time and so you don’t interact much with other patients. I did get to know my 2 technicians relatively well. Interestingly, both of them were here on assignment (one from Tennessee and one from the Caribbean). The cancer center does not have enough full time local employees and so they contract health care workers from other parts of the country. This is not a new phenomenon, it’s been happening a lot since COVID not just here but across the country.

Did the radiation help? It’s too early to know. There won’t be a clear, obvious signal. If my cancer become stable again then, yes, it probably helped.

So I’m “done” with radiation. When I arrived, the technicians greeted me with “happy graduation day.” When I finished, the nurse I met with to ‘discharge’ me handed me a certificate of sorts congratulating me on finishing radiation, signed by all the staff. It was a lovely gesture. After I met with her, I cried.

I shed tears not because of the kindness of the radiation staff or for finishing radiation. I cried because I know this is just one small blip on my road of trying to keep this disease under control. I’m not “done” with cancer. I haven’t really graduated to anything. I don’t feel like this venture into radiation is anything more than documenting and checking off a procedure.

I know it’s ok to cry about this. I feel sad knowing the reality of my situation. I let tears fall until I got to my car. I composed myself and drove home. I have things to do today and I’ll tuck this into the back of my mind and get back to living.

Hope you have plans to live big today too.

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See my day-to-day living with MBC on Instagram: @nottodaymbc
Sciency-cancer stuff on Twitter: @dcharlevo