How to Live...

I haven't done any research and probably need to speak to a therapist but as weird as it sounds, I'm having difficulty switching gears from thinking "this could be it" to thinking this drug is working and now trying to figure out how to live..

It takes so much out of you mentally going through this rollercoaster process of one week feeling like I'm dying (I had lymph nodes popping up all over the place, my back felt like is was going to snap, I could feel my lung scraping against a tumor, etc). Dealing with all of that is quite the test mentally, it is the ultimate test actually. You try your best to act "normal" on the exterior all the while inside I'm quietly freaking out. You can't always share it because after a while, people will tune you out or I'm afraid of bringing people down. It's a feeling not too many people can relate to and have to say, it's pretty lonely. Thank God I don't feel that way anymore...

What that feeling has been replaced with is a feeling of apprehension, a different kind of anxiety I guess than feeling like you're dying. It's almost feeling like you're in limbo, not knowing what to expect. I've gotten good at just taking each day as it comes and trying to enjoy the moment but now it's like, "what do I do now?" How long can I expect to feel relatively well? Do I dare make long term plans? What do I focus on? I guess you could say I'm a little lost at the moment...

I had been focusing on my sister, trying to get her a vehicle to get her out of the nursing home once in a while, going down to
Florida to pick up a little dog for my mom, getting started with Uber,finally gaining a part time job that suits my rollercoaster energy levels. These were all tangible goals that I know would help give me more of a sense of worth. Mission accomplished there... Now however, I'm not quite sure what to focus on and how to move forward. I'm so grateful that the Nivolumab seems to be working. I don't know, maybe I'm just having a bad day. I seem to do better lately when I'm around people. When I'm alone, I have zero ambition to do anything. I have to pick really small things and work my way up to bigger tasks. This actually has been going on for a while. Not sure if I have ADHD or ADD but I think it's time for me to go find out and do something about it. I feel so much pressure to enjoy this new gift of feeling relatively well, maybe I'm putting too much pressure on myself, can't seem to figure it out.

If there are any survivors reading this, I would love some feedback or input on how you handle "success" with a clinical trial if you have refractory cancer. I know I'm not alone feeling like this. I hope I was able to explain it well enough. I have so many things going through my head, I think I just need to simplify my life and maybe go back to basics, whatever basics are anymore, I don't know!

Writing this, I've convinced myself that I definitely need to speak to someone. My old therapist retired from Karmanos and it's been a while. I heard there was someone good at the Gilda's club over here in Royal Oak MI so that's going to be my first call.

Usually when I write one of these posts, I feel better. I wish I could say the same with this one but I'm afraid I'm going to need some help. Just to document this for reading later, I think that maybe the time of year may have something to do with the way I'm feeling. It's always strange when it starts to get dark sooner, the weather starts getting cold. Maybe there's some underlying anxiety back from when I was a kid knowing the sun and warm weather is going away for a while. I should continue my studies in Psychology, I find it really interesting why we feel the way we do about, anything! I've gone through so much trauma over the last 7 years I think it'd be strange if I didn't have issues quite frankly. I think you'd have to be a robot to not have difficulties coping after going through what I and my fellow refractory cancer survivors go through.

This reminds me of my Mom. She wasn't feeling all that great lately, complaining of body aches and bone aches. We find out tomorrow what the CT scan results are. Praying that she's ok and the aches are just from moving.

Hoping to follow this post up with some positive developments in my overall well being, not just my physical health. It's great to feel well but to truly enjoy it, I've got to figure out how to "embrace" it. I know that doesn't make sense on paper but I will hopefully be able to better explain when I talk to someone.

Until then, remembering to breathe, live in the moment and be truly thankful for everything I have!

Cheers,

Chris