October 1, 2019
Today was the one-year anniversary of the craniotomy where a tumor the size of a lime slice was removed from my brain. It was also my quarterly scan day where I have my CT scans, bone scan and meet all of the doctors on my care team.
Today took more of a toll on me than I anticipated. While I usually have a hard time sleeping on the night before scan days – because I have to get up a lot earlier than I’m used to so that I can be downtown on time – I’d do this even if I had to go into the office, so it’s not just the “scanxiety fueling the sleepless night. The stress of the conversations around my most recent MRI, the anticipation of meeting my palliative care doctor for the first time, and the regular every day stressors of work and life doing metastatic cancer alone.
Those who know me well know that I’m not one for tears. I found myself fighting off tears this morning nearly all the way downtown to start my day of scans and appointments. I was sending an email to my management about some problems we were having in getting a contract signed with an existing customer. It was hard admitting in black and white that I was struggling. That I wasn’t enough. That I couldn’t do the things I used to be able to do. The responses I was getting made me feel invisible. I realized later that I wasn’t asking for the right things. That I was not wasn’t communicating my needs clearly.
I ended up, a couple of days later, sending an email to the same management team stating out loud, as it were, that my fears were taking over my life. Oct 1st was the anniversary of the craniotomy. The surgery from which I ended up with a MRSA infection next to my brain. The infection that cost me my energy, my ability to do a lot of things without worrying about falling down, or trying to ascertain whether a twitch was a twitch or if it was a focal seizure. The condition that cost me much of my confidence in my ability to function on my own.
Looking back, I keep seeing the same story – something shows up on a scan, decisions are made in how to treat it, treatment is administered and side effects, anticipated or not, are managed as best as I can. The infection wasn’t anticipated. The time it took for the antibiotics to kill the infection wasn’t expected. The multiple hospital stays and home health nursing care weren’t on my radar.
All of these surprises took their toll. I just had another MRI and results were not conclusive in any direction.
I’m scared. I don’t want to go through any of what I went through last year again. I still have a hard time walking in crowds. Fluorescent lights still bother my eyes. I’m not used to driving at night anymore and doing so tends to freak me out depending on the day.
On the flip side, I just went to my optometrist to double check my prescription before committing to buy a 3-month supply of contacts. I am still good with the prescription I got in July. I can see 20/20. The more I get out and walk and am active, the better I feel.
While this is all good, I still have the rest of the month to get through. I have another MRI in a couple of weeks. Another anniversary is coming up on the 31st.
Once I realized how much all of this was affecting how I handled regular run of the mill work stress, I asked the palliative care doctor to a referral to an onco-psychologist to talk through my fears and anxiety around everything happening right now and that I went through in the last year. Also to talk about my fears for the future.
While everything is positive right now, I know all too well how that can change in one appointment. While I can’t control what my cancer does or how the treatment works or not, I can manage how I react to it. My first response is always that this isn’t in my control. I can only deal with this one day at a time. My second is that no matter where I am on a given day, I hold out hope that things will remain or become positive. That my body will respond positively to the treatment. That my tumors will continue to shrink. That the side effects won’t completely sideline me. That when my cancer mutates beyond the treatment that there is a new one that will hold it at bay at least long enough to see the places I want to see, to do the things I want to do, to be able to be at my niece’s college graduation. To see all of my nieces and nephews settled down with jobs they love, a home and a family of their own if that’s what they choose. Behind that, I wish for a chance to retire at a “normal” age with some time left to round out those last things on my bucket list.