Connecting through Conferences

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.

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.

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!

Holy Shit – My Pain was Legit

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.


Surgery plan – December 3, 2022

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!


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)

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