Welcome to the next way to connect with one another in the MBC community, My Life Matters. The Tigerlily Foundation's podcast series dedicated to sharing the perspectives of and learning about the unique challenges facing young women living with metastatic breast cancer, the MBC community and what they are doing to change it.
My Life Matters is hosted by Freelance health writer Erin Azuse RN, BSN, and features guests discussing topics such as the importance of clinical trials, balancing life and cancer. The conversations with guests are filled with honesty, stories of remarkable strength, and insight into relevant clinical topics.
Monthly episodes will be released on the 1st of each month and posted on the My Life Blog and will also be available in the iTunes Store.
Thank you to everyone that has contributed and we look forward to sharing this powerful series with everyone in the Metastatic Community.
Warmly,
Tigerlily Team
It all starts with "it's time to schedule your scans again" this is when I turn into a fading flower.
I was this vibrant, I can conquer the world, F cancer type of person, then it all goes downhill as each day and moment gets closer to scan day. I literally wait 4 days before I can even muster up the courage to schedule the scans.
Scan-xiety (scan anxiety) is a term those with cancer is familiar with. When you have cancer no matter the stage, you have to get some sort of scan of your body to make sure there isn't any cancer progression rather it be a MRI(brain, breast, back etc.), bone scan, ultrasound, CT,&/or PET scan.
Why do we freak out??!!? Welp, it's simple. I don't like the fact a machine is looking for something or finding anything else in my body that even blinks cancer. When you have stage IV metastatic breast cancer the goal is to keep it contained in the current locations. You want it to "stop freeze" remain where you are and be silent or shrink in that same location. Don't you MOVE, not even one inch.
This scan process occurs typically every 3 months. The time from making the scans appointment until the day of reckoning (results) with your provider, is scary as hell!!!Why? Why get all worked up about it?? It's just a diagnostic study...
Let me paint an image of how stressful this process actually is. The week before the scan you get pre-scan syndrome. Nerves going haywire, every ache and pain you feel, you think its progression which leads to you paying closer attention to it. Is this new? Have I felt this before? Did the pain heighten? Irritability, frustrations and freak out mode sets and it don't go away until you receive the results.
The night before the scans there is no sleep, insomnia is your friend. I start to ponder on my previous scans and try to remember the image so IF I even get a glimpse of my scan image I can try to identify if there is a "new" spot.
The day of the scans is an ALL day process. In addition to the anxiety, you are restricted from eating, you have to drink contrast, your cold, you have to fill out paperwork with repetitive questions, and you may have to deal with people who have an attitude when they check you in while your silently cursing them out in your brain, "look, dang it...I have cancer and I'm scared as crap your making it worse”. Being outside the oncology department can be a daunting process because the sensitivity level decreases drastically.
I usually have 2 scans scheduled that day, sometimes 3 if it's my year for a MRI of the brain scan. After getting an IV, I get injected at the nuclear medicine department with this substance that I call “Hulk juice” it’s the same gamma rays used to turn hulk into the angry green man. This radioactive dye is attracted to all the cancer spots in my body new and old. I then have to wait 3 hours and drink tons of fluids so I can get a full body scan from head to toe which is similar to getting a 45 minutes long x-ray. You have to lay completely motionless in this freezing cold room. If there are cancer present in the bones, the spots will become brighter on the images. This is an image of one of my actual bone scans.
After the “hulk” injection I am now radioactive for 3 days meaning I could set off the metal detectors. Once I am done with the injection I go over to the CT department and obtain my “lemonade” flavored contrast drink. It’s about a liter of fluid that I must complete within 2 hours. During this time I am still starving from hunger. Once I return after 2 hours to CT, I am then lying in this noisy machine that has me hold my breath multiple times and injected with IV contrast that makes me feel like a hot fire pit and as if I peed myself. This is a 10 minute process but a lot is going on at once.
All my scans are now completed for the day, I am very loopy because I needed anti-anxiety medications to keep me calm and lying still. This day takes me 6 hours and leaves me hungry and exhausted. I return home and is now nauseated from the contrast and I occasionally vomit. Then we WAIT…wait…and wait… until results are received and this could take potentially 2 weeks. So you worry for 2 more weeks. The results will be the cancer is stable with no progression or we have new cancer spots which proves we have progressed and will now need a new treatment regimen with a whole new set of side effects. YAY!!
It’s hard to overcome this emotion but you do your best, this procedure has to be done. Find ways that will ease you. Bring a friend, watch some Netflix while you wait to keep your mind off things, ask for warm blankets (that always make me feel warm on the inside), get a prescription for anti-anxiety medications so you can just sleep through it, or ask to listen to some music in the room.
This is why we fear the scans and how it gives those with metastatic breast cancer Scan-xiety. We must endure this for the rest of our lives, until there is a cure for cancer. We will bloom again!!
