>  Daily Journals   >  Day 16-20 – Controlling the Uncontrollable

Week 3 is coming to an end and things are ok at our house. Even though we are running around Orlando seeing this doctor and seeing that doctor, we go about trying to conquer daily life activites and try to be as “normal” as we can.

When it comes down to reality, life goes on, even after you get diagnosed with cancer. Life is different but it still goes on. We still have bills to pay, doctors to see and groceries to get. The normalcy of life always goes on. As they say, the world keeps on spinning. But things are different now. I am different. Sean is different. Life is just different.

Sean and I have been talking about the differences over the past few days. At times wondering if we could go back to the way it was before. Will we ever be able to see life like we did before cancer? The answer to this is probably not. Things are not the same anymore. Food doesn’t taste as good. Showers don’t feel as warm. Everything feels sort of “not important” while we prepare to fight for Sean’s life.

One of the biggest differences I have noticed with myself are my emotions. My emotions are so extreme. On the negative side, there is this extreme anger. And not the same anger as day 1-3. This anger is raw and will go from zero to a hundred quicker than you can say the word “anger”. Yesterday I was angry that the pharmacist wouldn’t fill a prescription fast enough. The day before that I was furious that a health insurance agent was telling me we couldn’t get a medication because it was too soon. The list goes on and on.

I don’t like being angry, mad or upset. I don’t like to fight (stop rolling your eyes Sean, I will do it when it is necessary #hurricanestef 😉). But today, when I threw a book across the room because it didn’t give me any answers on how to beat cancer, I realized what was making me so angry. CONTROL.

I started realizing that there are a lot of things regarding cancer that I can control but there are even more things that I cannot. This was a hard realization for me because I really do like to plan and control everything (Sean is now probably shaking his head up and down in agreement 😂). Traveling to a new location? No worries. I plan and document every possibility that we need. Food options – check. Hotel options – check. Transportation options – double check. It’s all under my control.

That loss of control is fueling every bit of my anger. I feel like I am Alice falling down the rabbit hole. Not the scary Alice but the fun animated Disney Alice. If you can remember Alice falling in the rabbit hole, all these things (books, tables, lamps) rush by her as she is falling. She doesn’t seem scared but rather intrigued by all of the objects she is seeing. For me, I am falling down that same rabbit hole with all this cancer information flying by and I was trying to absorb everything. Books upon books. Articles upon articles. Diets, recipes, herbs, you name it and I feel like I have read it. All of this information was rushing by me and each one made me feel more and more out of control. So many options, so many opinions, just so much of everything and yet no one clear path to follow.

The anger was building every second I was in that rabbit hole of uncertainty. It had to stop when Sean looked at me and said “What is wrong? You seem so different.” That statement went through me like a ton of bricks. What was wrong indeed? Why was I acting like this? I don’t want Sean’s last memories of me to be this terrible, angry ogre.

It wasn’t some eureka moment at that point but after a few days of reflection and talking to Sean, I realized all of my anger was about the control. When it comes to cancer, this disease is not something that can be put into a box. It is going to twist and turn and Sean’s experience is going to be unique to him and his body.

On the other side of the coin, there are positive emotions as well. The biggest positive is the love that Sean and I are sharing with one another. It’s so intense that it will bring me to tears while we are snuggling on the couch. We have always been each other’s lobster. Best friends from the very beginning. But this is different. This is end of the world kind of love. Longer hugs. More intense snuggles. We are trying to spend every second as close as we can get. It’s been absolutely wonderful. The world disappears when I am in Sean’s arms. Everything feels safe and at that moment, everything feels right.

Extreme highs and extreme lows. That about sums up what it has been like in our house the past 3 weeks. Even saying “emotion rollercoaster” doesn’t accurately depict how crazy my emotions have been. Maybe a rollercoaster where the train shoots off the track, looks like it’s going to crash into the pavement and then all of a sudden, a track appears and the train keeps on moving. Yeah, that pretty much sums it up.

Corona Update: I haven’t talked a lot about COVID-19. For us, especially when chemo starts, this is a very scary situation. We have been taking every precaution necessary to keep ourselves safe. One of the scariest thing is not being able to purchase Lysol spray for the hotel rooms we will be staying in. The hoarding nature of humans has always been fascinating to me. I saw it when a big snow storm would come in when I was growing up. We see it when a hurricane is barreling down on the state of FL. And we are now seeing it during this pandemic. I don’t get mad at anyone hoarding items that they feel like they need. If anyone understands wanting to feel safe, it’s us. We get it. Just keep this in mind next time you are out and about, especially if you are showing flu-like symptoms. There are some people that cannot avoid being out in public. People who need to pick up narcotic prescriptions and need to go into the pharmacy to show an ID to pick up the prescription. There are people getting treatment at a hospital that is not located in their hometown. These people need to eat at local restaurants, they need to go into new pharmacies, and they need to get gas for their vehicle to drive back and forth to the hospital. You may be thinking to yourself, why do I care about those people? Now just picture Sean and I in Jacksonville fighting against all the odds in Sean’s body and also fighting all the odds to not get the coronavirus. Not preaching. Just trying to make the situation a little more personal so you know what is at stake, especially if you are sick.


  • Heather

    March 16, 2020

    Love yall, sending hugs and prayers. Could we mail disenfective wipes and lysol to you? Is there anything else you need that you cant find in stores that we could help with?

  • Kathleen Castillo

    March 17, 2020

    Still praying for you and our country right now. Be safe out there. ❤❤❤

  • Susan

    March 17, 2020

    #seanandstefstrong also glad he was accepted in the trial

  • Melissia Taziar

    March 17, 2020

    The emotions you are experiencing are totally normal for family of someone who has Cancer. The patient goes through every emotion possible. And the family is right there along for the ride and shares the same emotions. The doctors will tell you that you will go through stages of emotion and Anger is a big one. So don’t let it take over and don’t give into it. Keep doing what you are doing and spend every moment you can together as you have been. I am so sorry that this stupid Corona Virus is happening now of all times. I live in Jacksonville and think about you guys every time I drive past the exit to the Mayo Clinic. Kept hoping that Sean would be accepted into the program.. So happy that he has been. Now I hope they help him and you guys are able to get food and the things you need while here in Jacksonville. If I had Lysol spray I would bring it to you! I literally havent seen any in any store. People bought every cleaning supply the minute they heard this was coming. I will say though, that the stores aren’t as empty as people are saying they are in other cities. So you may be able to find things you need here if you cant find them in Orlando. Nothing but positive thoughts for you guys and I pray that the Mayo Clinic is the answer that all of us have been hoping for.

  • Awilda Bravo

    March 17, 2020

    Sounds like you’re grieving. Perhaps grieving the life you just recently had. (This news is very recent). Anger is one of the emotions that comes with grieving. I’m sure you already have gone or are still going thru the others ; denial negotiation, depression . Just know that getting to the acceptance stage is a process. You may one day feel like you’re there and suddenly feel one of the other emotions.. It doesn’t mean that you’ve given up. It means that you are in a state of resolution so you can continue forward. Be patient with yourself.

  • Ang N

    March 17, 2020

    Unfortunately I know all to well how you are feeling. When my mom was sick the lack of control manifested in not being able to sleep. I get it – what helped me was knowing she was getting the best possible care. We started fundraising for cancer research charities because it felt like something we could ACTUALLY do! Which felt really really good! Wishing you both all the strength in the world to fight this battle! Sending thoughts and prayers your way!

  • Maureen Kirk

    March 17, 2020

    Love you guys!! Hold onto each other and feel all the love and prayers and positive vibes we all send your way!!

  • Paul Watkins

    March 17, 2020

    We have your back. If you need anything please reach out! We care about you two! #loveup

  • Aron Anderson

    March 18, 2020

    Oh, Sean and Stef… I don’t know what to say! I know I’m late to the party(?), but I just binged on the last three weeks of your life and couldn’t stop the slow and steady leak from the corners of my eyes.

    Sean, you are one of the most selfless and kind persons I have ever met. I will never forget some of the sacrifices you made — unbeknownst to me at the time or I never would have allowed it, I might add — when I had the pleasure of working with you last summer. Nor will I forget some of the amazing conversations and great laughs we enjoyed or the encouragement and learnings you freely shared with me in my new role.

    And, Stef, although we’ve not met, I feel like I know you from all the stories Sean shared at the office — and because I feel like we probably both separately shared a level of frustration (and admiration?) for Sean’s selfless dedication to getting a job done and done right, even when he should have been home or otherwise adventuring with you! Please know your sacrifices were not lost on me, either.

    If there’s one thing I learned about Sean during our weeks together, it’s that he sees things through, unwavering. And, I’m sure that he will face the battles that lie ahead with the same tenacity and amazing positivity. I wish you both the strength and patience necessary to face what lies before you. And, I am in awe of your courage in sharing this difficulty journey with all of us.

    I’ll be keeping you both in my thoughts and prayers and add my name to what is, I’m sure, a long list of friends offering assistance with anything you may need in the months ahead. My heart breaks for you, both, but I know you are fighters and cancer doesn’t yet know what it’s up against!

    Love to you both,

    – Aron



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