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.
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.
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)
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.
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 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.
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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.
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
Life As I Know It 