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 š³. I donāt 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 Iāve 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, weāre not fortune tellers, so we have to give ourselves a little grace if life doesnāt 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, itās 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!)
Iām somewhat familiar with the particular clinical trial and am eager to learn more. Itās 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 – Iām not gonna lie, it was a bit of a gut punch to hear her say āwhen the current treatment failsā. 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 Iād 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), itās not confirmed (believe it or not). The not-knowing is frustrating and challenging. Iāll 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 āfancyā cane. Lovely fleur-de-lis in white on black. Itās collapsible and comes with a bag so I can fold it up and carry it in my handbag.
I canāt walk unassisted, basically. I donāt 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, itās 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.
Iām very glad that this looks to be an option. At the same time, Iām reminded that while my mind wants to move forward with life and do all the thingsā¦.my body is riddled with cancer that is dictating everything.
Iām grateful for the access to care that I have. Itās 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. š
My enthusiasm is tempered a bit by a cranky hip.
My back pain is gone for now, and Iām having trouble walking due to hip pain. So much so that my oncologist ordered an MRI, which I had today. Iām 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, Iām 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.Ā Ā
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.
Hi everyone. I hope you are considering October as Breast ACTION month and are thinking before you āpinkā (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 āfineā. I started taking Ibrance again last month. However, itās 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 Iāve been having incredible (intermittent) back pain. Unfortunately, I donāt 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 Iāve described here. We largely do this quietly all while we are trying to both live a ānormalā 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.
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” ā “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.
The quick update: My scans from August looked āfineā (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!
Iāve 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.
Itās 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!
Itās because of science that Iām able to spend time with her and her daughter. Science that has let me live a pretty ānormalā 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. Iād 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. Itās 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 donāt bother me so much when I get them. I havenāt had much in the way of side effects – or so I thought. Iām thinking this shot is messing with my back.
The past few months Iāve had sporadic pain in my lower back. So much so that itās hard to move around, even walk. Itās hard to pinpoint what is happening, but Iām 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 āSelective Estrogen Receptor Degraderā (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. Itās kind of like a docking station. This medicine messes up the docking station so when the estrogen tries to attach to a cell it canāt. My cancer feeds off estrogen – if it canāt connect to the estrogen, it canāt 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 