Will I wake up from surgery and not know who I am? Will I go blind? Will I lose my hearing? Will I be able to walk, talk, think like I used to? Will I be a vegetable? Will I leave my kids without a mother, my husband without a wife, my parents without their daughter?
If I die, will my husband make sure my daughter stays in ballet, always looks put together and grows up into a strong, independent woman? Will he give my boys the gentle love and support of a mother - the kind they have become accustomed to? And, WHO, I mean, for goodness sake, WHOOOO is going to keep everything organized?!?! My husband had to ask his brother's wife where I keep the can opener in our kitchen...
If my family can’t come into the hospital because of COVID, who will hold my hand and tell me if I did okay? Whose face will I see when I open my eyes, if I can see? What if I don’t know how to use my cell phone or I can’t see it? What if I can’t remember my family’s numbers? How will I call them?
That is what my psychologist said to me before my surgery. Her words affected me so much that I called her back and asked her to repeat it so I could write it down. It’s been on a yellow sticky note on my wall ever since.
Your fears might be the same as mine or they might be completely different. But I know if you are getting ready for cancer surgery, you are probably afraid. The best advice I can offer you is, try to remember what F.E.A.R stands for and let it pass through you. I’m happy to tell you that most of my fears never materialized, and the few that did, resolved quickly. Since I'm a planner to a fault, I tried to pick the fears I could control and plan for them the best I could. Keep reading to see some of my biggest fears and how they turned out.
FEAR #1: My biggest fear is that I will die, either during surgery, immediately after or some time down the road because of this cancer.
I am still here, writing this, so obviously this one is going okay. No one knows what the future will bring, but that goes for everyone. Next.
FEAR #2: One of my biggest, most immediate fears was waking up alone after surgery and not knowing what happened.
Since we were in the thick of the COVID pandemic, there wasn't much I could do about this one except worry, worry and worry some more. The hospital had a no visitors, no exceptions, policy. Buttt, my husband’s cousin, Carla, who is a doctor with privileges at my hospital promised she would try to sneak into the Neurosurgery ICU and be there when I woke up. She DID, and she WAS. May God bless her always. I had never been so happy to see anyone, ever.
FEAR #3: I was so worried that I would hold up my phone after surgery and not know what to do with it, not be able to call my family and have to lay there, helpless and confused.
To ease this fear, my wonderful husband printed out two labels, one with his name and number, and another with my dad’s name and number. He stuck them to the back of my cell phone. The pre-op nurses took my phone from me once I was out of it, and I must have been gripping it so tightly that the label with my dad’s number came off and stuck to my hand. It stayed there during the entire surgery and it was the first thing I saw when I opened my eyes in the Neuro-ICU. I laughed out loud because, one, true to his character, he broke the rules and found a way to come into my surgery with me, and two, I could see the label!
FEAR #4: This was a huge fear! I was petrified I would wake up and not know who I was. What if I woke up blind, deaf and mute and didn't have any family there to claim me (I mean, looking back, this may have been one of my more dramatic moments...🤷🏻♀️).
I woke up from surgery knowing exactly who I was, cognizant and furious that Amazon had updated its software while I was unconscious because I felt this unsubstantiated, urgent need to buy paper towels & toilet paper (COVID, remember?). I was telling the nurses I was in pain, but not wanting any pain medication (typical for me) and yelling at the nurse who was trying to give me some. I was very upset, and thoroughly convinced that the nurses were trying to give me the same stuff that killed Michael Jackson – they weren’t. I apologized later but they said it’s a very normal reaction to the anesthesia. I couldn’t see too well and that didn’t resolve for months, but when the first nurse came in and spoke Spanish to me and I immediately answered him in Spanish without even thinking twice, I knew I was still there and my brain was working. Another fear squashed.
FEAR #5: I was afraid I would never drive again because my vision would never return to normal. And I read somewhere that in the UK they don't let you drive for 6 months after a craniotomy! I have no idea if that's actually true but it was enough to freak me out.
I'm not going to lie, it took a while until I was able to start driving again, a lot longer than I hoped, about 2 months to be exact. I know 2 months doesn't sound like a long time but tell that to my husband and parents who had to hear every day, all day, how I'd NEVERRRR drive again. How horrible it was that I'd lose all my independence, never be able to pick my kids up from school, drive to the supermarket, drive ANYWHERE!! The idea of being trapped at home forever was beyond devastating for me. But, just like my other fears, this one wasn't real either. Once my vision returned, I started out by driving around the neighborhood with my husband next to me, cheering me on, and dishing out a few too many "I-told-you-sos." When I felt ready to start driving on the highway, he joined me for a practice run, videotaping my momentous accomplishment and giving me that no nonsense, get it together push that only he can get away with.
I've been driving everywhere for a while now and its become commonplace again for me, but every once in a awhile, on a gorgeous South Florida day, I will feel overwhelmed with an appreciation to be behind the wheel, moving through life, living how I want, and going wherever I'm going. And it tears me up every. single. time.
FEAR #6: After my diagnosis, and throughout my recovery, I worried that I would never feel normal again.
The jury is still out on this one - I still don't feel "normal" if normal is defined by how I felt pre-diagnosis. But as I sit here writing this, I realize that I probably need a new definition of what it is to feel normal. I feel good, healthy, happy to be spending a quiet night at home with my family, grateful to be alive, a little achy because I worked out yesterday, a little anxious because I'm putting so much of myself out there in this blog, and a little nervous because I have my next set of scans coming up in a couple weeks. Perhaps this is my new normal, and I'm good with that.
FEAR #7: I was afraid that the trauma of my diagnosis, surgery, and recovery would permanently scar my children. I worried that they would see my scar and be scared of me. I worried that when my hair fell out from radiation they would be afraid of me and think I looked ugly. I was worried that they were worried about me - I didn't want them to worry. I worried that I wasn't a good enough mom during my recovery. The list never ends.
When I came home the kids were a little taken aback but after about 2 minutes they had a million questions. They grilled me with questions until they were satisfied that I wasn't in immense pain, that I was going to get better, and that my purple eye would go back to normal. We explained to them what happened to me in terms they could relate to, and they seemed fine with it as long as I seemed fine with it. My husband spoke to them about my hair before it fell out, and they were ready for it and acted like total pros. I think as long as they felt like they had a role, and that they were helping in some way, they did okay with everything.
FEAR #8: I was afraid I would be slow, have no memory, or even be brain dead. I mean, it just takes one shaky hand during surgery...
Following surgery, my brain was functioning mostly normal but things still overwhelmed and confused me for a while. For example, while I was in surgery, my phone updated and Amazon did a “complete makeover and revamped the navigation page” on their app. Wow..... Amazon. Thank you for that. Really. Literally, mind-blowing. Honestly, I can’t tell you how upsetting it was to feel so helpless and just plain dumb trying to use a cell phone and nothing working. I couldn’t remember passwords, or how to write an email. It felt very weird, but thank God it was only temporary. I can now talk on the phone, write a text, shop on Amazon and drive at the same time - totally kidding. I can do all that without driving, and I can make jokes about it too! Fear squashed.