Uncategorized – Life As I Know It

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.

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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.

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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

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

1 ☢️ down, 9 to go

After a short delay, radiation treatment is on.

I got a call late Monday (yesterday) saying my insurance approved the treatment plan, so in I went today for my first dose.

As my kids would say when they were younger “easy peasy lemon squeezy”. At least this one was. 15 minutes from when I walked in the door to when I left.

Two things stuck out to me.

The first is that it sounded exactly like when you get x-rays of your teeth at the dentist. Except, it lasted for like 20 or 30 seconds. Not gonna lie – that was a little unnerving.

The second was that they radiated the “front” of me and then the machine spun around the table and the radiated the “back”. This tripped me out a little because that radiation was traveling through the table into me. That hit differently. This is some powerful stuff.

Of course I knew this. At the same time, I go through most days with stage 4 cancer compartmentalized, ideally in the back of my mind. This made it come screaming front and center.

Tomorrow my appointment is at 8:45 am. They’ve already closed schools across the front range area due to a winter storm so there is a good chance I won’t make it. Not to worry, I have more appointments in the afternoon for regular oncology check ins and it sounds like they can squeeze me in for radiation in the afternoon. All the appointments are in the same building.

I’ll leave you with this wintery scene. We are expecting anywhere from 4-12” inches by tomorrow mid-morning.

Radiation and tattoos!

Well, I’m entering a new chapter of cancerland: radiation. I have avoided the radiation dance up to this point.

Alas, here we are.

One of the ways they monitor my metastatic breast cancer is through blood work and what they call “tumor markers”. If the tumor marker value is below a certain threshold, no active cancer. If it is above that threshold, “probably” active cancer. My tumor markers have been slowly rising above the threshold for a long time and then rose rapidly recently. My scans did not show any progression so the interpretation of the oncologist was that the cancer was stable.

Maybe not.

My hip/pelvis stabilization surgery last month showed significant “space” in my hip where basically the cancer had eaten away at the bone. That sort of thing does not show up well on imaging. So, the surgery was to shore up the bone, which it did.

The surgeon recommended a round of radiation to my hip to kill off any cancer cells that might be hanging out. For weeks now I’ve been preparing for the radiation therapy. This includes a consultation with a radiation oncologist, a preparatory appointment with a PET scan of the hip and then a simulation appointment where they line up everything in the radiation machine.

I’ve completed all of that.

I’ve learned that there is an entire team of medical professionals that work on my case. The radiation oncologist leads the team. Radiation therapists are experts in operating the machines. Radiation oncology nurses help patients manage side effects and also communicate with the family. The medical physicists work with the radiation oncologist and others to make sure each treatment is tailored properly for each patient. The dosimetrists work with the radiation oncologist and medical physicist to develop the precise treatment plan for each patient including calculating the correct dose of radiation.

No wonder it’s so expensive!

At my first preparation appointment I got a few tattoos! Not as exciting as it might seem.

I have 3 small black dots across my hips that will be used to align the radiation machine using lasers. It’s very common to get these small tattoos when getting radiation. The radiation technician joked that he has done more small black dot tattoos than any tattoo artist in Boulder!

The radiation machine looks like a very large Kitchen Aid mixer! The white draped surface to the right is where the patient lays, the table slides back toward the machine and the round element on the underside of the top is where the radiation comes out.

Now that everything is set up, I’ll have 10 doses of radiation over two weeks. I show up at the same time every day. It’s 15 minutes from when I walk in the building to when I leave. Fortunately the cancer center is only a 10 minute drive from my house.

The only hiccup is one that is not shocking. Insurance.

Cigna called to say that my radiation therapy is still not approved. The first request was for a procedure that did not conform to NCCN (National Comprehensive Cancer Network) guidelines. The radiation oncologist submitted a revised request. This one is still pending. It was pending as of 3:30 pm Friday afternoon. I can’t risk going to my 8:45 am appointment on Monday and not having it covered.

So, we wait.

Likely this will just be a short delay. It probably won’t have an overall impact on my situation. It is worrisome though because if I were in a more urgent situation, it would be frustrating and potentially harmful to delay.

In the meantime I’ll be spending the weekend doing some treadmill walking, playing with the cat, and reading some scientific papers on lobular breast cancer. Wishing you a weekend that is exactly how you want to spend your time.

Stay tuned for the next episode of Cancerland!

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Current medication: (2nd line of treatment) Fulvestrant, Ibrance, Zometa, Lupron

Holy Shit – My Pain was Legit

Happy 2023 everyone! I hope your holiday season has been exactly what you needed it to be. We stayed home and enjoyed each other’s company and brought home this little guy from the Humane Society to live with us.

Meet Toulouse – he’s 4 and the sweetest guy! He’s made himself right at home and we are all head over heels for him.

My hip stabilization procedure was December 12, just over 3 weeks ago. This morning I had a post-op appointment. Everything looks fine. I’m healing as expected.

It’s a bit frustrating to not heal faster. The surgeon commented that right now I’m in a period of time where the recovery slows a bit but our expectations do not. He thought that I was handling it better than most patients so that was nice. I’m trying to give myself a little grace, but it’s hard. I want to get out and move!

It was rather shocking to see the imaging taken just after the procedure.

The cancer is basically eating away the bone. For the surgery, they went in and filled in any cavernous areas of my hip with cement. They also added 2 screws that act like rebar in cement to hold it in place. The surgeon said they were surprised to see so much cavernous area and they put in a lot more cement than they were anticipating.

View of my right hip from behind. The dark area is cement. Within the cement two reinforcing screws are visible.

So, I told him that my pain was legit! He found that humorous and agreed that it was legit.

The image is of my right hip, looking from behind. The dark area is all cement. You can see the screws as well. Insane. It’s a bit sad too because it means that the medication was not really stopping the cancer from progressing. I’m hopeful that the combination of the new meds I started last summer and radiation I will be having next week will knock down any active cancer.

Tomorrow I have an appointment to get palliative radiation set up. They will plan everything out and then I’ll go in for 10 doses of ☢️, daily starting January 9. The actual radiation treatments should be quick.

So, the new year is bringing with it new treatments. Here’s to hoping they get everything stable. I’m also hopeful that 2023 will bring more advances in science that will provide more options for future treatment.

Onward!

Post-Surgery Update – December 13, 2022

Thanks for all your well wishes. I had my hip/pelvis stabilization surgical procedure yesterday. Everything went fine. It was an out-patient procedure and we were back home around 6pm. My oxygen levels were quite low so I had to hang around for the afternoon until those got back up to acceptable levels. I am mobile and could walk immediately afterwards.

Glen is in Chicago for work so Nancy flew out and it taking wonderfully good care of me.

I have 2 incisions. They injected some cement and put in 2 screws in a cross-cross pattern that are about the length of a pen 😳. I don’t have much pain but that is probably thanks to the OxyContin.

I will have a post-op appointment in January. The second step in all this is some radiation on my pelvis to knock down any cancer. That will also be after the new year.

I very much appreciate you all – I feel the love with all your texts and messages. Thank you.

Surgery plan – December 3, 2022

Many people have asked, I finally have a confirmed surgery date of Monday, December 12.

The plan is to have a procedure that should help stabilize my hip and pelvis. It will be done in Denver as out patient surgery and should only take 1-2 hours. I should be home that afternoon. One of my sisters is coming to help me.

I don’t need anything at this point. I don’t know how long the recovery will be; I’ve been told I should be up and about very quickly.

Later next week I have a consultant with a radiation oncologist. I will have some radiation to the hip later in the month just to kill off any pesky cancer cells that might be hanging out.

I appreciate all who have reached out. I hope to catch up with many of you who are local for coffee or a meal.

Thanks everyone!

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Cancer life on instagram @nottodaymbc

My monthly oncology appointment last week was fine. We just keep rolling along. Medications all the same.

Fulvestrant (a SERD that inhibits estrogen from feeding the cancer, 2 shots a month)
Ibrance (A CDK4/6 inhibitor that attacks cancer cells
Lupron (A monthly shot that puts me into menopause)
Zometa (A quarterly infusion that strengthens my bones)

My Cranky Hip – November 12, 2022

I mentioned briefly that my hip has been bothering me, so much so that I purchased a cane to help me walk.

Woman holding up a black cane. — This is my “fancy” cane. Lovely fleur-de-lis in white on black. It’s collapsible and comes with a bag so I can fold it up and carry it in my handbag.

I can’t walk unassisted, basically. I don’t want to continue to live like this because my quality of life (QOL) is not great.

So, I went to see an orthopedic oncologist in Denver.

I learned that the cancer has compromised my pelvis right exactly where my femur touches it. So, it’s painful whenever there is pressure or force exerted on it.

Dr. Lerman is in Denver and developed a novel approach to helping stabilize the pelvis of people with cancer. Rather than do a full hip replacement, he and Dr. Brown developed a surgical approach that will relieve my pain, take only a couple of hours of surgery, and have minimal recovery time.

It looks like I could have the procedure done after the Thanksgiving holiday. I don’t have any more details at this point, other than to share a short video of Dr. Lerman talking about what they do for the surgery.

I’m very glad that this looks to be an option. At the same time, I’m reminded that while my mind wants to move forward with life and do all the things….my body is riddled with cancer that is dictating everything.

I’m grateful for the access to care that I have. It’s also a struggle mentally and physically.

Thank you all for your support and checking in on me. I post about cancer stuff on this instagram account: @nottodaymbc

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!

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