I couldn’t sleep Wednesday night.
I think my brain was trying to process the change in my health this week. The amazingly awesome change. After you prepare yourself for the worst, amazing news takes process time. A glimmer of hope was able to peek into the dark room this week.
I had not let myself really conceive of anything beyond the words “stable” or a little bit of shrinkage. Tumors completely obliterated was not in my mental vocabulary.
I know I am super early on my road with metastatic breast cancer. My guts have been twisted in knots since I got BRONJ and could no longer take Zometa. The standard of care for tumors in your bones. I kept asking myself how long do you live when you can’t block growth in your bones with the main medicine for it?
After Letrazole wasn’t giving us the impact we were hoping for I started to get really scared. This was happening so fast.
That is the question in the back of all of our minds. How long am I going to live?
Stats say 2-3 years. 20% of stage IV breast cancer patients live beyond 5 years. For cancer, 5 years maybe seems pretty great (especially when you compare to some cancers, but I can’t speak for other cancers, I can speak for my own), but 80% of us aren’t and we are all terminal and asking ourselves “when?”
When will the next scan be the one that says it spread again?
When will the treatment stop working?
When do I need to finish my will?
When do I need to plan my funeral?
When am I going to run out of treatment options?
When is my world going to turn upside down?
We knocked out a ton of tumors in my body. I read a metastatic patient describe treatment being like whack a mole. I wish I could remember who so I could give them credit. We knock some down and wait for the next ones to pop up their heads. We try to knock them down too. Constantly swinging our arms with various treatments whacking away.
I have let the words NED and remission cross into my brain and vocabulary. There is a bit more twinkle in my eye as I consider the possibilities. The chance that I could remain stable for some time. Maybe I could actually be one of the 20% that makes it past 5 years with metastatic breast cancer. We all hope for that.
I was also pondering the various branches in what seems like the game of chance that is my cancer treatment. The small chance that we happened to finally locate my lost biopsy and validate that I was actually HER2+. If we had continued treating me for ER+ cancer only, I could have spiraled out of control quite quickly.
The chance that I pushed my oncologist to please go ahead and start chemo. I was ready to do something more drastic, I needed to see improvement and I felt like we needed to treat my HER2+ cancer.
The chance that I did go to MD Anderson and found out that my cancer had travelled beyond the regions we had known about. That it was in my ovaries. The chance that that hopefully gave us enough tissue to send to Foundation One to find what trials/new non-chemo treatments that opens up for me and where that takes me.
I feel like I am at the fair. Hanging on tight to the handle on the roller coaster, but I am doing it with my eyes wide open because I am not doing this without paying attention to what is going on.
I wrote this post on the plane to Philadelphia for the LBBC metastatic breast cancer conference which I will update on in another post. I felt like I should go ahead an share it rather than file it away like I do with some meandering posts.
Some of what I wrote is still bouncing around in my mind, even after being at the conference and meeting many beautiful women who have been living a long time. When do we have to stop asking when?
We took Fifi out Friday night after I got home from chemo (I am pretty sure I am halfway crazy). Mike did ALL of the work. I attempted to sleep most of the drive to the camping site. The evenings were cold, Saturday was gorgeous and I took a few lovely photos of the San Rafael Swell. My friends had a kite and I had big kite flying plans (it is on my list), but I was pretty worn out and was drawn to resting on the couch in the RV and cuddling with my dogs at the time. I need to get better at this – but I am picking on myself after going camping and flying to Philadelphia chemo week. -sigh- Lol.