A day in the life of a cancer survivor
Photos by Jill Marzion Photography
MRI days are BIG days when you are a cancer survivor. They are a chance for a huge sigh of relief when you get word there is no new signs of cancer and that everything looks "stable". In my world "stable" is a pretty amazing word. Stable means I can go back to living life without worrying for another one or two months depending on when my next MRI will be. MRI days can also be the day you learn your cancer is back or progressing which is the last thing you want to hear. So you walk into the cancer center that day knowing it will be good or bad, there is really no in between.
I actually am a wreck about 4 or 5 days leading up to MRI days. I am pretty good at living my every day life without thinking too often about my brain tumor. As MRI day nears, I think more and more about my health, fears of getting bad news bounce around my head at random points of the day, I start losing my appetite, it's hard to stay focused or in the moment because my mind is all over the place. Just about every time I have an MRI the day or two leading up to it I go into cleaning panic mode. I still don't know why but Jamie and I always joke about it. I can admit I am not the best at keeping our house super clean but before I leave for an MRI the house will be organized and spotless. It's not something I consciously do but somehow it always ends up happening. I think in all honestly it's because I fear I will get bad news and I just want to come home to cry and sulk in a clean house. What a weird way to think....like I said, my mind is all over the place.
I usually get little sleep the night before an MRI. I generally wake up early to make sure I have enough time to shower and get ready without feeling rushed. I want to feel healthy and in control when I walk in. I can still remember my first time pulling into that parking garage. It was pure fear, I was entering a CANCER building. It was a reality, I would be one of thousands of sick people walking around the building that were trying to rid their bodies of cancer.
I can remember the fear as I pulled up the first day and pulled into the parking garage underneath, I grabbed a parking ticket, found a spot and walked into the building. It didn't take long for me to realize the Cancer Center is AMAZING!!!! When I pull into the garage now, I feel a sense of calm, like I am at home, as strange as that sounds. I feel safe.
Each floor is designated with an animal to help you remember which floor you parked on. I always drive up to find a spot on the loon level because I just love the sound of the loons.
When parking on ground level you walk into the main entrance and are greeted by the same woman. EVERY single time I have been there she was behind the desk. I don't know her name but she is always smiling and laughing. It's the first impression you have upon arriving, a warm and welcoming face. I have seen her giving directions to people that are lost, helping people arrange for rides home and just generally being a positive force for everyone who passes by.
My first stop is always at the lab. I always check in with the same woman. She's so sweet. I always find myself looking at her hands. They remind me of my grandma's hands, wrinkled and almost swollen looking, rings are so tight you would think they would be painful but the skin looks SO soft and delicate. Every time I look at her hands I can see my Grandma T punching down dough for a loaf of homemade bread or cinnamon rolls.
She always has a huge smile, verifies my birthday, what doctor I am seeing, who my husband is. When she asks if I am employed, I tell her I am a mom she jokes every time that she is entering in an occupation like "executive homemaker" or "domestic engineer". Then I take my seat in the waiting area until my name is called. The blood draw is quick and I leave there with an IV placed and taped down to my arm for my MRI.
Jamie and I then walk from the Cancer Center into Froedtert for the MRI. Today it's in the lower level which is a long walk and then you have to find this weird hidden elevator where you go in on side but exist on the opposite side, I can finally find it without getting lost. I check in at the desk and go to the MRI area where I change into my gown and robe.
Policies changed just a few months back requiring everyone to wear a gown and robe. I used to be able to go in with my clothes on as long as it had no metal so I would purposely wear yoga pants, a tee and a sports bra so I could wear my regular clothes into the machine. I much preferred wearing my own clothes, I felt strong and healthy and the people working the machine had a sense of who you were.
Now you just go in with the same robe and gown that every other person has to wear. I have to remove my wedding ring and leave it in my locker which I also hate, like I am going in without Jamie. Walking to the machine in my gown and robe always makes me feel sick and kind of scared, not myself, not a strong resilient woman but just a patient. I am usually pleasantly surprised that even with the gown and robe, they usually still recognize me and immediately say "I remember you, I'll get you a warm blanket". I always request a warm blanket.
I lay down on the machine, they put the big cage around my head and I usually make some sort of awkward joke or comment because that is just what I do when I am nervous. They had me the ball to squeeze if I need anything and they all leave the room. A few seconds pass and I head into the machine.
The actual MRI is about 45 minutes, I think. Anyone that has been in an MRI machine knows how loud they are. I always wish I could fall asleep but it's too noisy so I lay there without moving for the entire 45 minutes. Sometimes my mind is in a good place and I think about upcoming events on our calendar, I think about planning a date night for Jamie and I, I think about fun things the boys and I will do this summer. Sometimes my mind goes to a bad place, I wonder every time there is a pause in the imaging if they just saw something alarming on the scan and are calling to inform my oncologist. Sometimes I want to cry and I am scared and alone. I try my hardest not to cry but it happens once in awhile and it's the worst. I can feel the tear forming in my eyes and I can't move so I can't wipe it away. I feel it getting bigger and bigger and eventually it will start running down my cheek ever so slowly. It tickles as the tears slowly make their way down my cheek before eventually going right into my ear. Now I have to sit the rest of the time trying to ignore the tickle in my ear while wondering if the MRI techs could see the tear and if they think I am some pathetic thing just stuck in this ginormous machine.
I always ask them not to talk to me during the scan other than to tell me when the contrast will be shot into my IV. This is the signal that I am almost done. I can feel the ripple in my veins as the contrast enters. It's about 5 minutes of scans and then they inform me the second round of contrast is coming. Another scan starts and about 30 seconds later you feel the cold contrast zipping through your veins again. This time you immediately get the taste of metal in your mouth. About another minute and the machine turns off. I slide out, they take the cage off my head and I hop off the table, get dressed and head back to the Cancer Center for my results.
There is usually some down time before I can meet with Dr. Connelly. I usually pop over and say hi to Maggie at Small Stones, grab lunch, check in with the boys and update family that I am done with the MRI.
Then we had over to the Dr. Connelly's check in area. We pass by the Quality of Life desk and giggle at the little guys on the desk that dance in the sunlight. There are always new ones depending on the season.
I love the walk to Dr. Connelly, the entire wall is windows and there is so much natural light. We check in and wait to get called back. Everyone there has a familiar face. Nurses comment on how much my hair has grown since the last time they have seen me, I always consider working on the puzzle that is out on the table in the waiting area, sometimes I grab myself a hot chocolate.
My name is called and I head back to get weighed, get in a room and have my temp and blood pressure taken. Then Jamie and I sit in the room and wait.
We try and pass the time with any sort of conversation we can think of to keep our mind busy. Then we hear Dr. Connelly knock and we both hold our breath. Thankfully every time she has walked in so far she has IMMEDIATELY said "everything looks great" as she is walking to her computer.
So we can instantly breath again but we know the day could come that she will just silently walk in and sit down and give us different news. We pray that is many MANY years down the road. She then pulls up the scans from that day and we will compare it to my original scans from when I was first diagnosed. We flip between scans and smile at how everything looks perfectly "stable".
No growth, no changes, the tumor has not lit up with any of the contrast. Dr. Connelly then does a quick evaluation of me.
It's a brief meeting, we smile and Dr. Connelly tells us when we need to come back for another scan. I am going every 3 months now, if my next scan looks stable we may be able to stretch it to 4 months. We schedule our next visit before we leave and then we walk back into the waiting area and head back to our cars.
We generally get a few steps away from the waiting area before Jamie and I grab hands and give each other a quick kiss. Jamie always give me hand a little squeeze and says "I knew it would go well".
We walk back to our car as we text our family to share the good news. Then we pull out of the parking garage and try to get back to "normal" life until the next appointment.
So there you have it, a day in the life of a gal battling a brain tumor. One who is lucky to have a large army of supporters and a great team of doctors that make this journey bearable. I GOT THIS.
A HUGE thanks to Jill Marzion who spent the day photographing this day for us. She is amazing at what she does and has a true gift for capturing all the small details that truly tell your story.
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