October is Breast Cancer Awareness Month (BCAM) and it’s always a good reminder to be cautious about how you might support breast cancer.
Many organizations jump on the pink bandwagon and very little if any of your donation goes to support patients or research.
Your best bet for supporting breast cancer is to donate to a reputable organization. My favorite are those that focus on research. Research is how we get new treatments and hopefully a cure.
I posted these last year and share them again. Some of these organizations also have a focus on Metastatic Breast Cancer (MBC). Recall that MBC is the *only* breast cancer that kills, yet receives much less funding that earlier stage, curable breast cancer. 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; 41% of their research dollars go toward MBC ($21.6 million annually).
Metavivor: The only organization dedicated to only MBC research and support. 100% of funds raised go toward MBC research. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up on October 13 in the colors of MBC (teal, green and pink). I am raising money for the #LightUpMBC campaign, you can view my fundraising page here.
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. I have invasive lobular breast cancer.
Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40. I participated in advocacy training (Hear My Voice) led by Living Beyond Breast Cancer.
Young Survival Coalition: Focused on supporting young adults (<40 years old) diagnosed with breast cancer. (I was first diagnosed when I was 39 and this organization was a life line.)
7 am check in time for a 7:30 PET scan. No coffee allowed before the scan. So glad they have early morning appointments!
I feel like I missed summer so I’m being intentional about eating lunch outside in the sun! I hope you are still getting outside now and again to get some fresh air and vitamin D.
This past week was a busy one medical-wise. I had my regular monthly appointments. Additionally I had an MRI on my lumbar spine region (lower back) and met with a neuro-oncologist.
My medical oncologist is lowering the dose of one of my medications (Ibrance). There are 3 dose levels. I’ve been on this highest dose for 4 years. Apparently after being on it for that long it is common for white blood cells to start to tank (neutrophils specifically). So, I will go to the next lower dosage. It should not affect the efficacy of the treatment.
It’s interesting that the default is to start patients on the highest tolerable dose of a drug and then lower the dosage when there are side effects or complications. There is a group of patient advocates that are trying to change this so doctors don’t default to the highest dose to start.
Anyway, this change should not affect my treatment. The change will happen next month.
The neuro-oncologist believes he has found the source of my nerve pain. It appears that I have tumor on both the L3 and L4 vertebrae. The tumors are on the inside of the vertebrae and pushing on the spinal cord. That is what is generating the nerve pain in my hip and leg.
His recommendation (which I will follow) is that he do surgery to remove the tumor material. It’s not scheduled yet, hopefully will happen within 2-3 weeks.
We don’t know if the tumors are new or if they are “old” and just got pushed/moved around. The first step will be to get me out of constant pain. The second will be for my oncologist to determine if the cancer has awakened or is still sleeping. I won’t have that information until early October.
With Metastatic Breast Cancer (MBC) the cancer spreads beyond the breast. I have bone only disease. This is good in that bone only disease does not kill you. However, it can mess you up royally. The cancer in my spine has now made it very difficult to walk. The current nerve pain only allows me to lay and sleep on my left side. It’s possible though that the bone disease can cause incontinence and other very unpleasant things. So, when I say “Things could be worse.” They could, indeed.
Maddy has started her junior year of HS and a new year of dance. Evelyn is moved in to her apartment and in the thick of classes as a sophomore at University of Colorado Boulder. (She is VERY excited for the football game tomorrow! Look for her on tv.) Glen finished his fly fishing trip and will be traveling for work next week.
I have work travel scheduled (which will likely be cancelled). I also am/was planning to go to a breast cancer symposium in Pittsburgh, attending as a patient advocate. We will see how all this travel shakes out with impending surgery. I don’t have a great feeling about this travel happening either.
This back surgery is a bump in the road. One thing at a time. Thanks to everyone for your support and love. Right back at ‘ cha!
We take our spine for granted! Stop doing that!MRI scrubs. It is extremely rare to be given scrubs that fit!My work buddy. I’ve taken over Evelyn’s bedroom as a workspace. Better light!
I am dropping a note but it’s not exactly cancer related. I’ve had pain and discomfort in my lower back and right leg since April when I had a bad fall. I’ve had 2 procedures since then to try to resolve the issue, with no luck.
I’ve been referred to a neuro-oncologist. Amazingly I was able to get an appointment for this week! So, I will go to meet with him (Dr. “Eddie” as he is referred to) and see what he has to say.
Those of you who have been dealing with chronic pain, I salute you. This is no joke, for sure.
In spite of that, I’m trying to make the best of the last days of summer. It’s been raining quite a bit here so my time sitting outside is a bit limited. Fortunately, we have big windows that look out on to the back yard filled with flowers.
In other news, Glen is wrapping up his annual fly fishing trip in southern Colorado. Evelyn is moved in to her first apartment. Maddy started her junior year and lasted 2 days before she came down with COVID. She missed the entire first full week of school, she also developed an ear infection. She is on the mend now, but it’s slow. No first day of school photos this year either. I have my regular oncology appointment next week (labs, office visit, treatment shots).
Our lovely cat, Toulouse, really needs a companion. I’m planning on visiting the local humane societies on a day when I can get my discomfort under sufficient control.
It’s hard to believe it’s almost September, I hope you are making the most of each day and your summer has been one filled with fun and making new memories.
Wedding anniversary dinnerToulouse enjoying the morning sun.View from my living room sofa
I’m happy to share that my cancer seems to be quiet and stable. I’ll take this.
I had scans 2 days ago and appointments today with my oncologist and for treatment. The CT scan identified something on my sternum but it can’t distinguish if it is healed bone or new cancer. Imaging is imperfect.
I have been getting CT scans (with contrast) and a bone scan roughly every 3 months since my diagnosis. I have bone-only disease and it’s hard to get good information from these images.
My oncologist wants to switch me over to PET scans, and he wants to do the next scan in October, two months away. I think he is suspicious of the CT results. Insurance companies don’t like to pay for PET scans but the oncologist is pretty confident he can make a good argument. I’ve only had one PET scan and that was how I was diagnosed with bone metastasis.
My immune system is not great right now – my blood work came back with low neutrophils. So, I have to wait a week to restart my Ibrance. I’ll have more lab work next Wednesday and if it looks better I can restart it. If it comes back the same then he will probably lower the dosage of the medication.
I have been having nerve pain all summer. I had a kypoplasty on June 1; the pain largely continued. I had an epidural steroid injection 2 weeks ago; the pain continues. Since nothing showed up on the CT scan, we can assume it’s not new cancer so I’ll head back to the other doctor to see what we can do.
The nerve pain is from the L4/L5 and extends all the way down my leg which makes walking difficult. I’m trying to get exercise in the warm water pool of the YMCA. It’s been a frustrating summer from a physical standpoint.
In other news, Evelyn is home from Europe and Maddy finished a 2 week, 12-hour per day dance workshop at the University of Colorado. It’s nice to have them both home. Ev will move into her apartment in ~1.5 weeks. Maddy starts her junior year next week. Glen is working a lot and will take time off later this month for an annual fly fishing trip.
However you choose to finish out the summer, I hope it is exactly what you need it to be.
Rockies gameInfusion to strengthen bonesView during treatment
In my head July 19, 2019 was the day I got the stage 4 diagnosis. Turns out it was actually July 18. No matter. The 19th was the first full day living with this reality.
It’s been four years. Probably closer to 5 given misdiagnosis.
I’m on my second line of treatment. For that I’m extremely grateful.
Is my life what I thought it would be at 54 years old? Absolutely not. Is my life good? Absolutely!
I’m a planner and have always had a Plan A, Plan B, and Plan C. Never was stage 4 cancer in the plan, but alas, here it is.
Don’t get me wrong, the whole thing sucks. There is no silver lining. There are no lessons learned. I didn’t get some grand awakening that made me appreciate my life more. Me and my family just had to pivot and find a new path forward.
I’m on my second treatment line of medication. That means that I was taking medication that stopped working and had to switch to new meds. Cancer is crafty and can figure how to outsmart the medication.
Fortunately, science is amazing and research is literally life saving.
If you have the means please consider supporting my fundraising for more research into MBC treatments. Even if I am not able to benefit, those who, unfortunately, come after me will.
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
Well friends, modern medicine for the win again. A few days ago I had a back procedure to help stabilize the lower back (lumbar region). Part of the procedure was something that a lot of people get (not cancer specific) – a kypoplasty. It’s basically where there is a compression fracture in your disk and they go in and “decompress” the vertebrae.
I had that done on my L5. When I met with the doctor the morning of the procedure, he explained that the cancer *really* likes my lumbar spine. It had been eating away at the various vertebrae and destabilizing my back.
I do find that every 9 months or so I’ll get crazy back pain that prevents me from doing just about anything. Within a few days it typically resolves. I’m hoping this will solve that problem.
Anyway, he wanted to go in and inject cement into the spaces in my vertebrae to shore them up and give me a lot more core stability. I said “Of course! Let’s do this!” So, away I went under general sedation for about 2 hours.
This was an arthroscopic procedure. I have 6 very tiny incisions scattered across my lower back where he “fixed” the spine. I was semi-conscious for it and while there were little pain points, overall it was very easy.
My recovery has been going fine. I’m feeling quite good. No pain meds needed so that has been really nice. I’m still taking some steroids and muscle relaxers.
I’m taking very short walks on the treadmill, trying to find the balance between moving and not overdoing it.
It seems like I still have a little tingling and slight discomfort in my leg (that nerve pain is caused by the spine). I’m optimistic that it will resolve soon.
For better or worse, I have work travel next week. I cannot lift anything more than 10 pounds so I will be very creative! It turns out Glen is also traveling and our flights align so I can lean on him a bit for some help with baggage.
My regular oncology appointment is not until mid-June. I don’t expect anything other than a standard quick check to make sure my bloodwork looks fine and I can continue my medication.
Hopefully by then I’ll be walking outside. Also hopefully by then this cool, rainy weather pattern we’ve been having in Colorado will break and I can enjoy a little vitamin D!
Wherever you are, I hope your summer is off to a good start. Get outside and enjoy that sunshine and fresh air!
The garden is loving the rain but it’s not very pleasant for sitting outside.
“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.
Throughout my scientific career, a yearly event is the Annual Conference. All professional societies gather their members once per year to network, share information and, frankly, to make money. (It’s a bit of a secret that societies use these events to help sustain their other activities.) Anyway, annual conferences happen in the breast cancer world too. It’s an important mechanism to bring people together and from the science side, share the latest breakthroughs in treatment and cancer understanding.
Each December in San Antonio is the San Antonio Breast Cancer Symposium – the largest breast cancer-focused conference in the world. There is also the MBC Research Conference, American Society of Clinical Oncology, European Society for Medical Oncology Congress, International Invasive Lobular Breast Cancer Symposium, and may others. (Note: there is really no difference between a symposium and a conference.)
The organization Living Beyond Breast Cancer organizes the Conference on Metastatic Breast Cancer. The focus is bringing together patients living with MBC to share information and educate about how best to take care of ourselves.
I attended the conference virtually in 2020 and was very excited to plan and attend in person this year. The plan was to travel to Philadelphia with a local MBC friend to meet up with hundreds of other women (and men) who are navigating the same ridiculous disease that I am.
There were sessions and talks devoted to mainly to caring for yourself, as well as new treatments and guidance on how to cope with grief.
I was really looking forward to being around so many others who can relate to what I’m going through. I’m heartbroken that we have an annual conference for this. I’m also sad that the vast majority of the 45,000 people in the U.S. who have MBC cannot attend.
It turns out I was not able to attend in person. I did join a few sessions virtually and connected with some women who I hopefully will stay in touch with.
I was crushed not to go. I made the decision at the last moment because I was really hoping to attend and was desperately hoping my pain would go away or at least be manageable.
This past month has been a rough one. I had a bad fall early in April and long story short, it seems to have aggravated part of my spine that was already compromised.
I’ve spent the past few weeks trying to get pain under control and making lots and lots of phone calls to a number of doctors to figure out what is going on.
We now think that the L4 of my spine (lower back, lumbar region) was hurt in the fall and it’s putting pressure on my nerves. I already had a burst fracture of my L4 and now there is likely a compression fracture as well.
Nerves emanate out of the spine and travel to different parts of our bodies, the lower back impacts the legs. The pain I’m having can be traced back to the L4 of my spine.
The current plan is to (1) keep my pain levels manageable (2) get a kyphoplasty procedure done on my L4.
I’ve been laying low for weeks now. Not much more than resting and sleeping and trying to work as I can. The pain meds make me very groggy so it’s been challenging to say the least.
While all that is not very exciting, we wrapped up April with multiple dance competitions for Maddy. We are all thrilled for her finishing in first place with both her solo for her age group and first place for her duo.
Maddy’s solo and duo; all smiles with her placement.
While Maddy was spending countless hours at the studio, Evelyn was wrapping up her freshman year and we got her moved out of her dorm and on a plane to Europe within 24 hours. She will spend some time in England with her boyfriend and study for 8 weeks in Rome, after which she’ll head back to England for a few more weeks.
Moving out of the dorms is relatively easy compared to moving in; Evelyn and Kieron ready to move on from American soil.
I was fortunate to spend a very important afternoon with a dear life-long friend who happened to be in Denver for work. The time was too short, I’m grateful we had those hours nonetheless.
Donna and Amy – friends since we were toddlers – probably before. ❤️
Life marches on, both the good and the bad. The cat is appreciating my new found sedentariness. I’ve not been able to go on walks so I would appreciate photos texted of whatever it is you might be doing outside! Get some fresh air and movement for me!
Daffodils making an appearance; Toulouse is taking advantage of my increased sleep; View from the cancer center infusion room – things are starting to green up.
Hi everyone. Spring is trying to push through here in Colorado and in many places where you live as well, and it hasn’t quite happened. We keep bouncing between sunny and 60 and 35 and snow.
Spring is also the time when the Federal government sets spending priorities for the fiscal year.
I’m asking you to please fill out this simple online form to ask your elected representatives to support increased research funding for metastatic research. (Any metastatic disease is not curable and needs more research!)
Enter your name, address and email and you will be taken to a template for each of your representatives. You will be asked for a “letter topic”. I selected “health care” from the drop down menu.
There is a message already written. You can use the template as is, or personalize it. Go ahead and tell them you know someone with metastatic breast cancer and that there needs to be more funding for research to find a cure! Make it as personal as you can.
Thank you in advance. Requests sent before April 30 will be most impactful.
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The phlox are happy in the sun and don’t seem to mind the snow.
Life As I Know It 