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.
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.
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)
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.
I mentioned briefly that my hip has been bothering me, so much so that I purchased a cane to help me walk.
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.
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
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)
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.
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.
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.
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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.
Second IV did the trick; red area was the missGetting my Zometa infusion – only 20 minutes!
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Current meds: Ibrance (125 mg), Fluvestrant, Zometa, Lupron
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
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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.
Life As I Know It 