status quo – Page 2 – Life As I Know It

A summer of good news

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.

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.

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)

Update – November 3, 2022

Winter has given us a sneak peak today. First measurable snow of the season.

I had monthly appointments this week. My CT and bone scans were the same as August. This means STABLE MABLE is back. 🙌

My enthusiasm is tempered a bit by a cranky hip.

My back pain is gone for now, and I’m having trouble walking due to hip pain. So much so that my oncologist ordered an MRI, which I had today. I’m hoping it gives me some answers.

The hip pain means my daily walks have ceased – for now.

Fingers crossed the MRI shine a light on the problem.

Onward!

~~~~~~~~

Current meds (2nd line of treatment):
* Ibrance, 125 mg (oral meds)
* Fluvestrant (monthly shots)
* Lupron (monthly shot)
* Zometa (quarterly infustion)

Gratitude – November 25, 2021

Time marches on and today is the Thanksgiving holiday. As I sit here with the Macy’s Thanksgiving Day parade on, silent in the background and a bright blue sky with frost on the grass, I’m thinking about all the things to do today. And I’m grateful for all those things. I feel “fine” and have the energy to bake pies and help Glen grill a turkey and make a last minute run to the grocery store. Most of that will happen this morning while our teens sleep.

I’m grateful for science too because I have science to thank for this. My doctor appointment last week was “uneventful” largely because the medication to keep my cancer from progressing seems to be (mostly) working. My blood work looked fine and my CA 27-29 tumor marker was steady from last month.

At the appointment we talked a lot about what my scans from last month showed. An enlarged lymph node and a small new nodule in my lung. I remembered that I got my COVID booster 3 days before my scan and the enlarged lymph node was on the side where my shot was. We all think (and hope) that is the reason for that. The lung nodule – who knows?

A friend asked me how I’m doing with so much uncertainty. I believe there are two ways to approach this. I can panic and fret about if the spot in my lung is cancer. I don’t think that is a good choice of energy. I cannot do a single thing about this lung nodule and won’t know more until after I have scans in January. So, I spend the time until then soaking up life and doing things that are meaningful to me.

I’m choosing to live in each moment as much as possible.

I’m trying to read more books, go on daily walks outside and celebrate milestones. Maddy turned 15 earlier this month. Her Golden Birthday (15 on the 15th). We had a birthday weekend celebration that included a movie, dinner, a surprise party and two cakes.

Evelyn got her senior pictures and is busy applying for college. She’s interested engineering. We see less and less of her as she and her friends do more and more together (thanks to vaccinations!).

Glen and I are enjoying being “office mates” and continue to find time for walking and cooking and are experiencing more and more empty nester moments as we find ourselves home alone.

I hope you all have a relaxing holiday and find the time to do things that are meaningful to you.

~~~~~~~~

Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in January.

February 4, 2021

Dear Friends and Family –

A few years ago Evelyn did a project for school where she made a calendar. Each day of the calendar was a different “national” day. National donut day (June 4), national chocolate day (November 11), my personal favorite – national wine day (May 25). I’m writing this on February 4, World Cancer Day. Not even national cancer day – WORLD cancer day. Who knew this existed? Not me. Now you do. Take this opportunity to enlighten others about cancer, donate to cancer research (if you have the means), or reach out to someone you know impacted by cancer. (Sadly the list for that last one is probably substantial).

Today I had my monthly treatment and medical visits. These are every 28 days (Thursday afternoons) and fortunately are relatively short and usually pain free. I typically wait to write until I get all my blood work back, which takes up to 72 hours. It seemed fitting to write today though.

I’m still taking the same medication and on the same treatment plan as when I was diagnosed in July 2019. Earlier this week I started cycle 21 of my medication. (We count the time I’m on this medication by the 28-day cycle of the meds.) I’m still taking Ibrance (you’ve probably seen commercials for it on television) and Anastrozole. Those are oral meds and I take them daily. Today I received a shot of Lupron and an infusion of Zometa. I have very few side effects from the medication. My treatment today was pretty uneventful, which is always good.

Lately I’ve been feeling fine. Some days I feel great! That’s the thing about Stage 4 cancer that is weird. I don’t physically feel bad. I’m not incapacitated. I worked this morning. I styled my hair today – I still have hair. I thought about how I didn’t want to exercise and did it anyway. Probably pretty similar to your day in many ways.

I’ll stay on this medication until it no longer keeps the cancer at bay. When will that happen? No one knows. Will I know when it is happening – will I feel it? Might feel exactly like I do right now, I might have some terrible pain, no one can say. How will we know if the medication has stopped working? When my scans show new cancer.

Speaking of which, I’m up again for scans – will have them just before my March appointment. I get them every 3 months. It feels a little bit like the movie Groundhog Day. A lot of repetition. I’m ok with that. In fact, I am grateful for it. It means nothing has changed and that’s the best we can hope for.

I hope those of you on the front lines of health care or enjoying your later years have received a vaccine or will get one soon. Until we all are vaccinated, Mask Up, social distance and stay safe.

Be well.