I feel guilty even writing about this topic. I am in a good spot in terms of my health and mental state. The tumours in some spots are in check, even while others are growing. I’m not living day to day, instead I feel like I can live day to day with an eye on tomorrow. It’s a big change, trust me.
But all that being said these days I feel like I am in limbo.
I have written about this before; it’s a consistent theme for me. I go from a sprint to a marathon, back to a sprint and now a protracted marathon. One of those marathons where you aren’t physically struggling, but your brain keeps talking to you and makes up new reasons why the marathon is going to be a bigger challenge than you thought it was going to be 20 steps ago. If you are a runner you know what I’m talking about…that darn brain has a way of getting in its own way.
You would think I would be happy with being in a good spot and only dealing with a full body itch, a butt rash, sore gums and eyes and the occasional headache. It sure beats what was happening months ago with respect to multiple surgeries, IV bags, endless narcotics and draining tubes out of my side, etc.
You would think I would be happy to be free of all that. Maybe I expect too much of my life and want to feel more present each day without worry for what may be coming.
But to be completely frank the real issue isn’t the physical aspect. It’s the mental state. And to be even more honest, the challenge is in how my health is affecting those around me. It’s hard to be a partner to someone going through this. And somehow being at Defcon 4 may be almost easier for the caregiver. At this state of high emergency you don’t have time to think, you are more in a reactive state and doing what is necessary. And you feel it will be over soon.
Harsh, but true.
When I look back at the months where I was in and out of emergency and surgeries I can now see how I was looking inwards. Focusing on myself and my body while Tracey was focusing on me and everything else.
Now that we are at Defcon 2 there is way more time to think. And sometimes that is dangerous. I can see it in how we, as a couple, interact with respect to things. Here I am feeling great and wanting to do tons of stuff - travel, play soccer, visit friends and even look at going back to work. Not only do I want to do stuff, but I have also have opinions. I have the energy to provide input and want to be a part of the process. Input on things I had given up and now want to be involved in again.
The rules in our house keep changing. And my opinion sometimes isn’t really helpful.
And from Tracey’s perspective she is waiting for the shoe to drop again because she’s the one that has to pick up the pieces if/once it happens. She doesn’t get the luxury of control in the sense that I have it. She cannot tell when I wince if it’s serious or just a temporary wince. She cannot do anything but react to my state.
As a result of us being at an emergency level of care Tracey can easily slip into anticipatory grief. She’s a planner, she makes sure stuff gets done. She makes order out of chaos, that’s who she is and what she does, and to do so one needs to know the big plan. She can quickly be reminded that some of the decisions and things we are doing may need to be done without me in the future. It’s hard for her not to always be thinking of things as though I am not a part of the process anymore.
It’s the lousy part of her role as caregiver and survivor. She takes care of me when I am ill, all while being prepared for the inevitable. My death results in her becoming a single parent.
For me it’s actually quite simple, I get sicker till I die. For Tracey it doesn’t end there. And having to endure this protracted process is a real test of patience. And living for today, planning for tomorrow just seems to get more complicated when the playing field seems to keep changing.
Now don’t get me wrong, I know she wants me around. We love each other deeply, but the longer this ‘One Year’ plan goes on the more complicated it seems to get.
And I’m not wishing for it to change. But I do find it to be a lot like nailing jello to a wall. It’s not easy either way.
We of course are truly enjoying each and every day, we have taken some great trips as of late, we are planning trips in the future and are making sure to spend as much time with the kids as a family unit. Our family dinners are robust, the conversations are getting more interesting as they mature into adults. Our plans for Xmas are set, we’re looking at an adventure in Banff in the next couple of months and we certainly have lots of micro moments to laugh and enjoy each others company.
Ok. Now that I’ve said that, I’m not sure exactly what I was hoping to accomplish in this post. I don’t often feel whiny but for some reason I just wrote a post that feels like I don’t appreciate being healthy. How did that happen?
Maybe I’m getting bored with being and not doing? I’ve always had a purpose, and up till recently just staying alive was my sole focus…but now just having Cancer without all the drama seems to be lacking in adventure. Something for me to think about.
I want to find ways to help Tracey through this tough time as well. I truly feel bad for what she is going through, and while I know it isn’t my fault, I do have pangs of guilt for being on this side of the equation.
For now, I think I’ll just have to be more patient. I’m going to channel my inner Barbara Mae Button for this one, my mom was without a doubt the most patient women I have ever known. And this endurance race is requiring a concentrated amount of patience.