One Step Forward, Two Steps Back
Last updated: October 2021
No, this is not a case of opposites attracting. (For those who may not know, reference to Paula Abdul's 1988 hit "Opposites Attract.") Today, we're talking about follow-up appointments.
Setting up the follow-up schedule
When I finished chemo, my oncologist explained the follow-up process and how I'd gradually be moved further and further out (more time between follow-ups). He also explained that he'd keep a closer eye on me longer than the national bladder cancer guidelines since my diagnosis was so advanced at the point of diagnosis.
Cool, I thought. I'll hit the 3-month appointments for a bit, get moved out to 6 months, and then a year. There was a game plan, set intervals...GOALS!
That didn't mean that I wasn't experiencing scanxiety with each appointment as I had to get CT scans and blood work. I most assuredly did! I had made a ritual of it: CT scans first thing on Saturday morning so I didn't have to take off work or be cranky with anyone since I had to be NPO (nothing by mouth - no food or fluids!). After the scans were complete, breakfast at Bob Evans to celebrate that I was cancer-free and made it through yet another scan. The following Tuesday, I'd see the oncologist. Usually, I did peek at my results in MyChart before the appointment, but if I had questions, I could wait until then.
I graduated from the 3-month appointments fairly quickly. Although, I did have to have a PET scan before moving onto the 6-month intervals. It is here, however, that I seem to be stuck.
Stuck at the 6-month mark
I am approaching the 4-year mark from the end of my chemo treatments and I'm still being seen every 6 months. While I truly adore my oncologist, who I would seriously carry around in my pocket if I could, I'd really like to see him a bit less. Seeing him every 6 months just reminds me that I am not where I want to be...still in his office...every 6 months!
Continuing to work on my personal goals
In the meanwhile, in between appointments, I continue working on my health goals, writing, advocating, making strides in my life. I enjoy the social time with my oncologist because he's delightful, but, let's face it, with COVID-19, it's not the same and MUCH shorter of a visit. Dr. W is always thrilled with how I look and what my labs are doing. The place that I get hung up on is the CT scans.
You can't fake it 'til you make it with scans. They just are what they are! You just lay there and they see what they see.
Something suspicious on the CT scans
Every time I think I am about to hear those sweet words, "See ya' in a year," they see something in the scans. Something suspicious. Something that is most probably nothing. Still, it's something to be watched. It's something that brings me back for everything in 3 months.
Fortunately, those intermittent 3-month follow-ups actually have always turned out to be nothing. I have that one 3-month appointment and then I get kicked back out to 6 months...but I haven't made it past 6 months yet!
Feeling frustrated when I want to feel grateful
I know it shouldn't upset me. It should be something I'm grateful for. Frequent appointments are better than being 6 feet under, after all. Still, I get frustrated with myself even though I know I shouldn't. There's nothing I can do to change what is seen in the scans. Yet, I feel a twinge of failure. I shouldn't, but I do.
Sometimes, you just want to be done with it all. No more appointments. No more bloodwork. No more CT scans.
I will likely always have to follow-up
I realize that is probably never going to be my reality. I will like always have to at least follow up with the urologist even if I don't have to follow up with the oncologist. However, going less often would allow me to make-believe just a little longer that my life is just that - my life - and nothing more or less.
Frequent appointments are frequent reminders of bladder cancer
The more frequent the visits, the more frequent are the reminders that cancer has permanently changed my reality. It's not good, bad, or indifferent, it just is. Bladder cancer no longer controls my entire life, but even being NED since my surgery, it still has a much stronger grasp on it than I'd like.
Does your bladder cancer treatment have an impact on your mental health?
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