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.
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!
So sorry to hear about your back. I hope the procedure gives you relief.
Hi, Sweetie! So sorry to hear about your fall and the resulting issues with your back. As you know, I can certainly relate to back pain and it is excruciating. I had an appt with my pain management physician/surgeon today, and he told me some of my pain and ambulatory issues are emanating from another compression and deterioration at the L-1 and L-2 level, in spite of the fact that I have had multiple surgeries including instrumentation in that area.
That will have to wait, however, since I am a long way from recovered from the shoulder/bicep surgery I had in February, and on Tuesday I was told that I have a 6 mm kidney stone in my L kidney, and an 11 mm gallstone in my gallbladder, both of which have also been producing pain. I, like you, just can’t seem to catch a break this year!!! We will be trying to dissolve the kidney stone, since it is too large to pass through the tubes, and watching the gallstone, to determine if/when to surgically remove it if necessary.
I think the biggest hurdle for both of us is pain management. I hope that you are receiving the proper level of that, but I know that there is tremendous resistance to distribution of strong pain meds in spite of the great need by those of us who truly require it. Chronic pain is a huge problem, and the long term needs by patients who cannot be fully rehabilitated is something no one wants to talk about, since the longer you are on the meds, the stronger they have to be for you to receive the same level of relief. I am also very frustrated with the insurance companies, and the state and federal entities that are controlling this, but don’t get me started….😒.
Hopefully, you can be given what you need both medication-wise and surgically to get you back on your feet. It’s really too bad you missed your conference, I know it meant a lot to you. Please keep us posted. I know when you are feeling so bad it is hard to want to communicate with anyone, but get Glen to let us know if you are not up to it.
Thanks so much for the info and photos of Maddy! Such a little superstar! We are so proud of her!
We will be thinking of you this Mother’s Day, and wishing you a wonderful day for a wonderful Mother!
Mom & Pop Seifert
So sorry to hear all of this, whew! How overwhelming and difficult and….!! I appreciate the photos and the good news. You seem able to focus on the good so good for you! We both speak of you and mention you so often, and it’s fun to see what the “girls” are up to! Dave didn’t recognize your childhood friend, you didn’t bring her to Christmas breakfast??
Miss you and Glen and sending our love and lots of positive energy vibes!
I thoroughly enjoyed our time together! Even the short visit was so much better than no visit at all. I love you my dear friend! Looking forward to our next visit!