I want to give you a small glimpse into what it is like to live with Metastatic Breast Cancer or MBC (also known as Stage 4 Breast Cancer).

Time stands still while you are waiting for a phone call

I try not to let MBC control my life, but there are some days when I just can’t help it.

I’ve had MBC since 2010. Since then I have had scans every 3, 4 or 6 months.  More frequently at the beginning, and then the doctor started to spread them out as I became “stable” with no signs of progression. The scans are so routine, that when I call to schedule them, I sometimes have to help the scheduler understand how to get them on the schedule in the right order (you know, because if you have to get more than one scan done, you want to get them all done on the same day so you don’t have to go back another day).

A couple of weeks ago it was time to have my scans done again. I have had so many of these scans that I should be a member of a frequent scanner plan (too bad that isn’t a thing, I’m sure I would be eligible for my free scans by now). I go in like a pro. I’m dressed so I don’t have to change into a gown for the scans. I schedule the CT for first thing in the morning because it requires me to fast (no eating or drinking for 6 hours before).  The total bone scan requires an injection and a 3-hour wait before the actual scan begins. This gives me time to go get breakfast after the CT is done and then still be done with the scans before I’ve lost the entire day.

I don’t usually get anxious when I am getting the scans.  The anxiety does not start setting in until a few days later while I pray that a call does not come from my oncologist. On the outside, I appear to be continuing to function at a normal level. I go to lunch or dinner with friends. When people ask if I’ve heard anything from my scans I reply “No news is good news.” This philosophy has worked well for me so far. I’ve only had a few scares along the way when I got a phone call and we had to discuss how to proceed with treatments. I know I have been very lucky!

Generally, I feel the anxiety start to dissipate after about a week to 10 days after I’ve had the scans. So when I received a call on Thursday this week from one of my oncologists (yes, I have more than one – my general oncologist and an orthopedic oncologist), my heart skipped a beat (or maybe more than just one). It had been two weeks since my scans were done. I had already let go of the scanxiety.

The orthopedic oncologist’s office called and left a message a little before 5 on Thursday afternoon. Needless to say, I was unable to return the call before the phones switched to the after-hours call message. My mind went in all sorts of different directions Thursday night. Finally settling on if the call was from my orthopedic oncologist that meant the problem was still bone related and the cancer had not started to show up in any of my organs. Yes, that would be the best news in the given situation.

After tossing and turning all night, 8:30 am finally came and I could return the call. Once I got through all of the push this number for that person nonsense (I really miss the days of being able to speak directly to an individual, especially when you are sitting on pins and needles needing an immediate answer) I got the voicemail of the person who called me Thursday night. I left my name and number and sat and waited for the phone to ring, unable to focus or do anything until I knew what the call was about.

At noon, the call finally came. My heart was beating so loud I almost could not hear what he was saying. As I took a few deep breaths to calm down, he began to speak and it sounded like the teacher from Peanuts. I had to ask him to repeat what he said. All I heard and understood was “everything is stable.” WHAT?

I asked him a question about what he said and he told me “I’m sorry, I’m just reading the notes from [the Physician Assistant]. Would you like to speak to her?” In my head I’m screaming “Why, YES, YES I WOULD!” but instead said, “yes, please.”

He transferred me to the Physician Assistant and she calmly explained that the radiologist that had read the scans saw something “loose” in my hip and had sent it to my orthopedic oncologist to review. When all was said and done, there was “nothing loose, because you don’t have anything that could be loose” and that my scans were “stable.”

So for 19 hours, I feared the worst. I wondered what treatment would be next. I wondered if I would tell my kids at Thanksgiving or wait until they finished the semester and were home for Christmas. I stared at a picture of my husband and wished once again that he was here to help me through these times. I prayed and I prayed some more. I even asked my husband to talk to God directly for me.

This is just a glimpse into the emotional rollercoaster that someone with MBC goes through on a regular basis.