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!

~~~~~~~~

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

Breast Cancer Action Month – October 30, 2022

October is coming to a close and so is Breast Cancer Action Month.

If the month slipped away from you, do not fret! There is one very simple thing you can do.

Please go to this link and click Take Action. The form will send a message to your elected federal officials (Senators and your Representative) asking them to support two bills I hope Congress will pass. You will need to enter your street address so they can find your elected Representative.

Right now those of us diagnosed with MBC (a terminal illness) have to wait a minimum of 5 months to receive disability assistance through Social Security, and, you have to wait 2 years to qualify for Medicare.

The Metastatic Breast Cancer Access to Care Act (House bill 3183 and Senate bill 1312) would eliminate the 5-month Social Security Disability Waiting Period and the subsequent 24-month Medicare waiting period for individuals with metastatic breast cancer.

The second bill is the Cancer Drug Parity Act (House bill 4385 and Senate bill 3080). In a nutshell, this bill requires insurance plans to cover cancer medications taken at home instead of at a cancer center/hospital. For example, I’m on an oral medication that I take at home – Ibrance. Right now, insurance companies are not required to approve – or pay for – cancer medications that are taken at home.

I know this might seem overwhelming if you are not used to looking at bills and legislation. Please know that many individuals are dedicated to making it easy for us all to participate in our democracy and let our elected officials know what is important.

On a personal note, I see the oncologist later this week. I had scans last week and will learn at my next appointment if the medications are keeping the cancer quiet. More soon.

Oh, and don’t forget to go vote!

MBC Awareness Day – October 13, 2022

October is Breast Cancer Awareness (Action) Month.

October 13 is Metastatic Breast Cancer Awareness Day. We get one day.

Metastatic Breast Cancer has it’s own ribbon: green, teal and pink. The green represents renewal, hope and immortality, teal symbolizes healing and spirituality, and pink signifies the metastatic cancer originated in the breast.

The Metastatic Breast Cancer Ribbon

Tonight, landmarks across the U.S. will light up in the green, teal, and pink. The #LightUpMBC campaign, by Metavivor, is raising both awareness of and money for research of MBC. You can learn more about the #LightUpMBC campaign here. Find a landmark near you!

MBC does not discriminate. Anyone can get it.

Approximately 30% of early stage breast cancer survivors will have a recurrence as metastatic disease, even after completing successful treatment. I was “successfully” treated for Stage 0 breast cancer in 2009, only to have it return as stage 4 in 2019.

685,000 people a year die from metastatic breast cancer globally. In the U.S. ~42,000 people die annually, that is 115 people every day.

Right now it is estimated that only 22% of U.S. MBC patients live longer than 5 years, and only 11% of live longer than 10 years. (I’m confident this number is now higher and more and more people are living longer due to advances in research and treatment and how the survival number is calculated.)

However, there is NO CURE for MBC.  

I will be taking medication for the rest of my life. Eventually the cancer figures out how to outsmart the medication so you have to move to another option. We need more research for both treatment options and something to get us to a cure.

In the late 1970s my dear aunt, Jeanne, died from Metastatic Breast Cancer. She was treated in the 60s, “cured,” with a recurrence that was terminal. Fast forward 40+ years. Still no cure. More people (mostly women, but men also) dying annually from MBC.

If you can support MBC research, please join me in supporting the #LightUpMBC campaign. You can donate here: https://donate.metavivor.org/fundraiser/3935528

If you cannot donate, please share information about MBC with at least one other person.

If you are willing to advocate for more research and support for MBC, explore the National Breast Cancer Coalition: https://www.stopbreastcancer.org/

Thank you.

~~~~~

On a personal note: yesterday I went back to the cancer center to have bloodwork checked. My immune system has recovered enough to start taking Ibrance again. I’ll have another check in 3 weeks where they will determine if I can stay on the same dose, or need to reduce.

I’ll have scans before that appointment to see if all the medications are working to keep the cancer quiet.

I had an MRI of my back last week to try to figure out why I have intermittent, debilitating pain. No new information. Very frustrating. Fortunately for the moment, my back is feeling better.

Current meds:
* Ibrance, 125 mg (oral meds)
* Fluvestrant (monthly shots)
* Lupron (monthly shot)
* Zometa (quarterly infustion

Update – October 6, 2022

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.

Enough with awareness. We need a cure.

Morning walk at our local (very low) lake.

~~~~~~~

Treatment:

Flaslodex (Fluvestrant)
Ibrance (Palbociclib)
Lupron (Luprolide)
Zometa (Zeldronic Acid)

Next scans, end of October

Pink-tober

September 29, 2022

Summer has always been my favorite season – it’s warm, sunny, and my birthday is in the first part of it.

Growing up in Wisconsin, fall meant cold and snow. Now fall means spending 31 days with everything awash in pink for breast cancer awareness month. …I’m not liking fall even more now.

Don’t get me wrong, awareness of breast cancer is important – critical. Even more important is that we find a cure. The only way to find a cure is to fund research. “Awareness” ≠ “ending breast cancer”.

We need to make October Breast Cancer Action Month. But be cautious in how you act and what you support.

Pink and the ribbon are great ways for companies to make money – often without doing anything to actually help support breast cancer research or those dealing with it.

When I first moved to Colorado I saw there was an option for a breast cancer license plate. I asked where the additional $50/year for that plate went. They responded that by having it on cars they were raising awareness. Nice idea, but not really helpful. $0 toward breast cancer and $50 to the DMV.

If you are looking to support the cause this October, ask questions about where your hard earned dollars are going. Please consider supporting organizations that focus on research and in particular research for metastatic (stage 4) breast cancer. Metastatic breast cancer is the only one that kills. If you cure stage 4 breast cancer, you cure all breast cancer.

My current top 5 organizations — with a focus on Metastatic Breast Cancer (MBC). Reach out if you want more info. I could talk all day long about this!

  • Breast Cancer Research Fund: Dedicated to ending breast cancer through support of research; 40% of their research dollars go toward MBC (close to $20 million annually). Every dollar donated this month will be matched – you can have twice the impact!
  • Metavivor: The only organization dedicated to MBC research and support. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up in the colors of MBC (teal, green and pink).
  • Lobular Breast Cancer Alliance: Alliance of organizations, doctors, patients, and allies dedicated to learning more about lobular breast cancer. Invasive lobular breast cancer typically does not form a lump and is difficult to detect on imaging, so difficult to diagnose.
  • Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40.
  • Young Survival Coalition: Focused on supporting young adults (<40 years old) diagnosed with breast cancer.

Update – September 12, 2022

The quick update: My scans from August looked “fine” (the cancer is not growing, no progression) and my tumors marker bloodwork from this month showed improvement. Lower numbers are better and mine dropped so that is also encouraging!

So, we celebrate!

I’ve been fortunate to have the opportunity to travel (work and pleasure) and generally feeling good. Generally.

I had to go to Pasadena for work and stayed for the weekend. Maddy flew out to join me and we spent the Labor Day weekend with my BFF. We played tourist on Saturday in the 100+ degree heat.

It’s amazing to reflect back on time – Laura and I met when I went to grad school in Davis, CA. She needed a roommate and I needed a place to stay. That was 1993 – before social media, before cell phones. We had a phone call – I think – and that was it. We were roommates. Little did I know I was gaining a fourth sister!

It’s because of science that I’m able to spend time with her and her daughter. Science that has let me live a pretty “normal” life since this diagnosis of stage IV (metastatic) breast cancer. If this were 2010 or even 2015, the conversation would be very different. I would not be creating these new memories. I’d be recovering from chemo that probably would not work very long.

I sound like a broken record – live your life. Really. Do those things that have meaning and will matter to you a year or 5 years or 10 years from now. It’s way too easy to get caught up in the day to day and slide through life.

~~~~~~

Longer science-y version

I withdrew from the clinical trial. I decided I was not comfortable with not knowing if I was getting medication or the placebo. To be clear, I was getting the standard of care – meaning that I was getting the medication that is normally prescribed.

On Wednesday of last week (5 days ago) I re-started Ibrance, the CDK 4/6 inhibitor that I was on before. This is paired with a drug that blocks estrogen. That drug for me now is a shot called Fluvestrant (or Flaslodex). The shots don’t bother me so much when I get them. I haven’t had much in the way of side effects – or so I thought. I’m thinking this shot is messing with my back.

The past few months I’ve had sporadic pain in my lower back. So much so that it’s hard to move around, even walk. It’s hard to pinpoint what is happening, but I’m now thinking there might be a correlation and this is a side effect. (I actually had an episode this past weekend that lasted 24 hours during which I could barely stand up and walk.)

Fluvestrant is a “Selective Estrogen Receptor Degrader” (a SERD). This means that it messes with the estrogen receptor on cells. You can think of the receptor as the thing the estrogen attaches to. It’s kind of like a docking station. This medicine messes up the docking station so when the estrogen tries to attach to a cell it can’t. My cancer feeds off estrogen – if it can’t connect to the estrogen, it can’t proliferate and grow.

Previously I was on a different drug that prevented the creation of estrogen. The thought is that the cancer figured out what was going on and found a way to work around that to grow. So, I had to switch treatments.

Hopefully this SERD will work and for a long time!

I also continue to get an infusion of a bone strengthener every three months (Zometa). I had my infusion on Wednesday also. My veins tend to roll and are not easy to get an IV into. I thought a new nurse hit the jackpot until the saline started going into my arm. Nothing major, but it was uncomfortable and they had to try a different location for the IV. Certainly not the end of the world but one of those things you deal with living in Cancerland.

~~~~

Current meds: Ibrance (125 mg), Fluvestrant, Zometa, Lupron

Science – August 15, 2022

Summer is slipping away, I noticed the air felt different yesterday afternoon during a walk. I’m sitting outside as I write this listening to the soft sound of rain. The monsoon kicked in and we’ve had a lot of wet afternoons and evenings.

Update short version:

I had medical appointments last week.

My CT scan (which is imaging of my chest, abdomen, pelvis) was “stable”. Excellent news! We DO NOT want the cancer to migrate to the soft tissue organs. It’s much more difficult to manage.

My tumor marker blood work rose again (not great, we want lower, not higher). This alone is not evidence of how things are going.

My oncologist is good with the CT scans so we continue onward. The new medication may be working. (I’m nervous and concerned because I have lobular breast cancer which can migrate to the GI track and other places and it does NOT show up on imaging.)

So, onward! More medication, more walking daily, more trying to be intentional. I hope you all are living each day to it’s fullest. You are not guaranteed tomorrow.

If you are on Instagram my MBC account is @nottodaymbc

~~~~~~~

Longer version. I’m in a clinical trial where I don’t know if I’m getting the extra medication being tested or a placebo. In researching it more, I’m thinking I just want the actual meds. 🙂 They are FDA approved for this use, the trial is to see how effective they area.

I’m a HUGE advocate and proponent for science. You all know that.

This clinical research trial (CRT) is basically taking the “regular” medicine alone vs. taking the “regular” medicine with an “extra” medicine. The phase II trial showed that the “extra” medicine extended the time before a breast cancer patient had progression. (Progression is when the cancer finds a way to grow.) The trial I’m currently enrolled in is to determine how much more time a patient gets before progression.

Like I said, I’m all about science.

But this is personal. This is literally a matter of life and death.

I might be getting the “extra” medicine and then that would be great. I might be getting the placebo and missing out on the benefit of the other meds.

I don’t think I’m willing to risk not getting the “extra” medicine.

If I withdraw from the trial will it set back science? Yes, maybe a little.

Will it give me piece of mind to know I’m getting the actual meds and not the placebo? Yes, for sure.

What if I’m already getting the “extra” meds? I don’t know. Maybe I am, maybe I’m not. There is a 50/50 chance.

I’ve been thinking about all of this a lot; especially since my cancer tumor marker bloodwork is not great. Why are those numbers rising? Is it because they are unreliable or is it because this lobular breast cancer (that doesn’t show up on imaging) is growing in some other area?

So. Much. Uncertainty.

I really thought that science was more concrete than this. This is more like art mixed with science with a dash of uncertainty sprinkled in.

So what to do?

  • Stay positive – do whatever I can to keep a positive mindset and know that I’m doing all I can to be as healthy as possible.
  • Be informed – try to read as many scientific articles about this trial and the medication as possible

Meanwhile, life.

Cara was here visiting and we went to Colorado Springs for ziplining and whitewater rafting.

Evelyn moves in to the dorms today at the University of Colorado.

Maddy starts her sophomore year of high school on Thursday.

Glen and I celebrated our 21st wedding anniversary last week.

I’m not letting life pass me by and you should not either. Seize the day.

Rafting on the Arkansas River. I’m in the bright pink shirt. Cara is middle row closest to camera and Maddy is far side of the boat, second back.
Hiking with Glen, late July. We are so fortunate to live somewhere with beautiful vistas!
Maddy spent 5 days in Wisconsin and then Cara 5 days here. We went to Meow Wolf in Denver and then to dinner as a last family adventure before school starts.

~~~~~

Current treatment:

Fluvestrant (Flaslodex) monthly (2 shots) – Selective Estrogen Receptor Degrader (shuts down estrogen)

Lupron monthly (1 shot) – puts me in menopause

Zometa, quarterly (infusion) – bone strengthener

Maybe Verzenio (CDK 4/6 inhibitor) or maybe placebo (clinical research trial: postMONARCH)

Uncertainty – July 15, 2022

Uncertainty is tough. We all deal with it everyday and it’s stressful. Hopefully we all have coping mechanisms to deal with it.

Uncertainty with health is a different level for me and probably for anyone with a chronic or life threatening situation.

Last month my oncologist and I agreed to change my treatment plan because it seemed like it was not effective any longer. That’s a hard thing to process.

While there are “Standard of Care” treatment plans for metastatic breast cancer (MBC), it’s not as black and white as you might think. There is room for the doctor to try to tailor the treatment to the patient. Whenever there is a change in treatment there is opportunity to enroll in a Clinical Research Trial. Trials are important because it is a key part of the process in how new treatments are discovered and approved.

My treatment is standard of care “plus”. In this CRT I’ve enrolled in (postMONARCH) I may be getting additional medication or a placebo. It’s a blind study so I don’t know which I am getting.

I don’t know if it is working. I won’t know until several months have passed.

I will have scans again in early August. This is much sooner than I had been getting them because the CRT requires CT scans every 8 weeks. (That also is concerning to me.)

This morning I received bloodwork for my CA 27-29 tumor marker. It’s jumped up a lot. Way more than it ever has. I don’t know that it means the medication is not working – it’s too early to tell I think. I am reading that sometimes when you start a treatment the counts can spike (Patient Guide to Tumor Markers).

So. Much. Uncertainty.

How do I deal with it? Good question.

  1. Honor the uncertainty. It’s not helpful to bury my head in the sand and ignore this. It’s not going away so figuring out how to manage my stress about it is important.
  2. Spend time meaningfully. I feel better when I’m doing something. Keeping busy doing things that I value or spending time with people I care about helps.
  3. Trust the Science. The science of medicine continues to advance. Medical practitioners go through extensive training to best treat patients. I also believe there is a mind-body connection so mental health is equally important.
  4. Take care as best as possible. Continue to eat healthy, move as much as I can, sleep. Control those things I can control. (As evidenced in the photos at the end of this post.)

Life is good and it also has terrible elements. Don’t let those bad moments outshine the good.

Walking in early morning to beat the summer heat.
I LOVE to sit outside in summer and we added lights to make the space more inviting in the evenings.
We have a nice walking path that circles our neighborhood. It’s a nice 15 minute walk that helps me clear my head.

3 years

3 years ago was the summer of 2019. Before COVID-19. Life was normal.

What were you doing that summer? What were your hopes and dreams? Did you plan to reach out to that old friend? Or get in better shape? Clean out that closet? Eat healthier? Maybe you wanted to travel somewhere on your bucket list, did you go?

What have you done in the past three years to make yourself happy? To make the lives of others better? To make the world a better place?

If you are like me, you have ideas in your head of things you want to do. Lots of things. Often, these are things for later, for when the kids are older, or out of the house. For when we are not so busy at work. For when we have more money. For tomorrow.

But life is funny. It has a way of moving forward with, or without us.

It’s easy for us to get into a routine. Routine is good – it gives us structure. It gives us a framework for our daily life.

Routine is also safe. It’s an easy excuse for why we don’t go out of our comfort zone, out on a limb, take a risk. Do something out of the ordinary.

Three years sounds like a long time. If you look back at that summer, it may not seem that long ago. (Yes, ok, COVID made time slow down, I admit that.)

Life slips away from us. Life is all the little moments aggregated together. If we are not careful, we get swept up in the everyday and forget to take a step back and look at the bigger picture.

What if, in the summer of 2019, you were told you had a terminal illness and that the life expectancy was only a few years? Would you have spent the last 1095 days doing what you did?

It’s hard not to take each day for granted. It’s our responsibility to make the most of each day, make the world a better place, and leave this world better than when we entered it.

Don’t wait.