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
“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.
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
Quick check in now that I’ve got 5 of 10 radiation treatments completed (with a music nod for a title to my fellow Gen-Xers).
Fortunately, things are going smoothly. The radiation staff are great. I’m literally in and out. I leave the house at 8:30 am and am back home by 9:15. (Watch me jinx myself for tomorrow!)
I don’t have any notable side effects (at this point). I’m slathering up with lotion and staying hydrated.
They do the same procedure every time so it does go a tiny bit quicker than the first time. On Wednesday I had a check in with the radiation oncologist which went fine.
Also on last Wednesday I had my monthly medical oncology appointment. That didn’t go as well. It was “fine” overall. My neutrophils were low (1.02) and normally they’d let me restart my Ibrance medication with that value but because of the radiation they are holding those meds for a month.
I get 3 shots each month. 2 were in my right hip and it seems like one has hit a nerve so I’m have some really unpleasant side effects with that.
On Friday I learned my tumor markers have almost doubled as well. Why? Could be many reasons. Not really sure.
So, it’s been an eventful few days.
On a fabulous note, I read a book on Saturday (Big Little Lies, recommend!) and Sunday watched both football games. It was a very relaxing weekend.
I’ve not been able to get outside for a good solid walk since late October. The weather is helping me to be less sad about that. It’s very Midwest-like with overcast skies, cold and occasional snow.
Soon the weather will break and I’ll be up and about. Darkest before the dawn!
Be well my friends.
View of the mountains from the cancer center parking lot this morning. You can barely make out some of the foothills. I’m ready for some sunshine!
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.
If you know me well, you know that I’ve always got a plan and a backup, and a few more backups beyond that. I gotta say, my current life situation was no where in my planning or remotely on my radar.
This being said, we’re not fortune tellers, so we have to give ourselves a little grace if life doesn’t go as we plan, hope, or desire.
Short update: Had my monthly visit to the cancer center. Pretty routine – awesome blood draws by the lab techs, lovely chats with the Nurse Practitioner and front receptionist, and once the IV was in my infusion was smooth. The second stick for the infusion is always tricky. My one good vein is used for the labs and then they pull in the rock star nursing staff to get a vein the second time.
Anyway, this was a routine check to make sure nothing weird is going on and everything is A-ok.
Perk of a mask is that it keeps my face warm as I exit the cancer center tonight in the cold.
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Longer update: You will recall that with Metastatic Breast Cancer (MBC) there is no cure; only treatments. Once you run through all the treatment lines you run out of options and the cancer wins. So, the goal is to stay on any treatment as long as possible.
There is general guidance for treatments that are based on the subtype of MBC you have. The oncologist and patient talk about the wiggle room in that guidance and make a personalized plan.
Right now it appears that my current treatment line is working (my scans in October were stable). However, it’s always good to be looking forward so we can sort through options and come up with a good plan.
To that end, I got a call earlier today from the Clinical Research Coordinator reaching out with information about a potential clinical research trial that is an option when my current treatment line fails. She gave me paperwork today to read through so I can learn more.
(Fun fact for those of you familiar with the IRB process. The pre-screening informed consent form is 15 pages long. The informed consent for the trial is 30 pages long. A tad bit more detail and information than the ones we fill out for education research!)
I’m somewhat familiar with the particular clinical trial and am eager to learn more. It’s important to note that clinical research trials are not a last resort! There are many that provide standard of care while also investigating new treatments.
I love to have information – and yet – I’m not gonna lie, it was a bit of a gut punch to hear her say ‘when the current treatment fails’. No one wants to think about that, but we have to. Well, I have to. I cannot bury my head in the sand and pretend like the current meds will work forever. I firmly believe knowledge is power and I’d rather be in the power seat with cancer.
One more note – my hip has only gotten crankier. I am hoping to have a procedure done next week (December 5), it’s not confirmed (believe it or not). The not-knowing is frustrating and challenging. I’ll share more once I actually have information.
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)
Hi everyone. I hope you are considering October as Breast ACTION month and are thinking before you “pink” (Pink-tober).
Yesterday I had my monthly check in with the oncology team. It happened to also be the day I got an MRI on my back to investigate some significant pain.
My appointment was “fine”. I started taking Ibrance again last month. However, it’s really compromised my immune system. So much so, that I have to wait another week to restart it. Normally it is 1 week off to let your body recover. They are having me take 2 weeks off. I will go back next week to see if my bloodwork looks better. If it looks better, I restart. If I still have a compromised immune system they will probably lower the dosage.
I had my other treatment (shots) and those seemed to have gone fine.
The MRI was to try to give us some ideas about why I’ve been having incredible (intermittent) back pain. Unfortunately, I don’t have any new answers. This is incredibly frustrating.
So, yesterday was a rough day. None of my medical appointments were great. I also found out that a fellow MBC sister passed away last week. She was diagnosed one month before me. She lived in Colorado Springs and we communicated a lot. Last summer she and her husband were able to meet Glen and I for lunch. We had a lovely visit. She was only a few years older than me, and like I said diagnosed at basically the same time.
Terralissa and Bill Eastburn met Glen and I for lunch, August 2021..
This disease is rubbish.
From the American Society of Clinical Oncology:This year, an estimated 290,560 people (287,850 women and 2,710 men) in the United States will be diagnosed with invasive breast cancer. Breast cancer is the most common cancer in women in the United States, excluding skin cancer. Worldwide, female breast cancer has now surpassed lung cancer as the most commonly diagnosed cancer. An estimated 2,261,419 women were diagnosed with breast cancer (worldwide) in 2020.
44,000 mothers, daughters, wives, friends will die from breast cancer this year. They will die from metastatic breast cancer. That is 120 people EVERY SINGLE DAY.
Every single woman (or man, yes – men get breast cancer) deals with things like I’ve described here. We largely do this quietly all while we are trying to both live a ‘normal’ life and help push the needle on breast cancer research and awareness of MBC.
Everyone is going through something. Give everyone a little grace as you go through your day. And please spread the word that we need more research for MBC, and a cure.
Life As I Know It 