Dominoes

I’ve been thinking a lot about dominoes recently. As in, the unintended consequences of various happenings and decisions. It seems to me lately that I’m the only one thinking about and aware of all the potential issues and consequences, which is not a great place to be.

Let me share with you an example …

As many of you know, I’m participating in a clinical trial. A clinical trial that has a pretty rigid schedule where each part affects every part coming after. So, recently I drove the 2+ hour trip from Orlando to Jacksonville, checked in 30 minutes before my appointment (the earliest I am allowed to check in), was escorted back to a room about fifteen (15) minutes before my appointment and was seated in my chair with vitals taken by the time of my actual appointment.

And crickets.

The person who was supposed to defrost those t-cells that are the second part of a four (4) part trial protocol was away from her computer when I checked in. She waltzed in about 30 minutes after my appointment was scheduled and I’d been waiting for over an hour, absolutely nonplussed.

Now that might not seem like such a huge issue but that extra time meant that everything for two days of appointments was thrown off and pushed back and my children were negatively affected.

My boys have endured a lot due to my cancer treatments. They’ve had to wean abruptly, missed out on things, they don’t always have a parent present at activities or awards, they have to take precautions to prevent illness that are likely seen as overkill by others, so many days I’m just not 100% physically or emotionally, their dad has to divert energy from them very often, and so many other things. We ask a lot of them, they have to be so much more flexible than I always hope.

My kiddos are often the last domino. Once all of the things are ironed out among the adults, they are often the ones left wondering what is going on, what happened. They are told no over and over. They have to adjust.

I’m afraid the clinical trial staff learned what a lunatic I can be when my kiddos are affected. There are some things now in place for next time; at the same time, I am increasingly fuming about how much those of us in clinical trials are simply an after thought, how our time and efforts are discounted and unimportant. Many of the wait times I’ve encountered because of mistakes have been brushed off, dismissed and ignored.

The dominos fall, the chain reaction affects more than just me and I’m so so so tired of having to question and advocate so hard. Cancer takes and takes and takes and then the healthcare system picks over the carcass of our lives. I’ve put up with a lot and likely will continue to do so but when the negative effects falls on my boys, that’s the last straw.