Not Always Okay

I know I haven’t wrote in a few weeks. I’ve wanted to I just haven’t been able to for a few reasons. I’ve been trying to tread water lately it seems with weights tied to my feet. Fatigue, emotions, appointments- at times I just was/am not okay.

Fatigue

Fatigue is hard to get your head around if you have never experienced it. Often people will use interchangeable words like “tired” or “exhausted” or “beat” and so on. While we feel tired and exhausted the difference is that no amount of rest or coffee or energy drinks that fix that, whereas sleep or rest will fix these things if you’re truly just tired or exhausted.

I had to take off work the other day at noon, I slept for 6 hours and then another 8 or 9 at night. Great right? Well I woke up the next day feeling the same. That is fatigue. I’ve been dealing with it a lot this year so far but the last few weeks have been especially tough. There is no fix. You need to rest and sleep but it does not raise your energy and, if anything, possibly just prevents your energy from dropping more. So if your loved one is fatigued it is okay to tell them to rest- just know that it more than likely won’t make a difference.

Emotions

Always in flux. The past few weeks have been rough. Loneliness, fear, sadness, anxiety- spin the wheel of negative emotions and wherever it lands I have experienced it. But, such is life cancer. There’s really no cancer without death. Now yes, not all cancers equal death but mentally, there is no cancer without the looming dark cloud of death always around. Maybe some days you’re looking to the sun and you don’t notice that cloud, but it’s there.

Please be smart, don’t stare at the sun.

I’m worried about it, dying that is. I’m afraid it’s going to happen soon. Death always happens too soon- there’s never enough time. The problem is that the fear at times will paralyze you. You have limited time and you want to make the most of it but that fear, the anxiety-inducing, tear streaming fear freezes you in place. And you waste some of that time. Sounds dumb right? Just move and just do it (sorry Nike). Easier said than done. You want to do things and enjoy things and it is infuriating that it is not side effects holding you back but rather your own brain.

How do you reckon with that? How do you stop that cycle of fear, anger and regret? It is not rhetorical. I just don’t have the answer. Most will say to just live and do things. Again- easier said than done. Maybe there is no perfect answer to this except to just keep going, when I can, and to not beat myself up when I can’t.

Note: It is not helpful when we say we’re afraid of dying and someone says “We’re all going to die. You or I could be hit by a bus and die tomorrow.” Stop that immediately. It’s insensitive, naive and just disrespectful.

What Now?

Well in this moment, and most likely today, I’m alright. Still fatigued and always worried. But okay. I have started my new medicine, Everolimus (Afinitor). So far I don’t notice any egregious side effects. It has been just about a week so we shall see. In good news my brain scan was fine. I’ll take that as a win.

On the medical front I have labs to do, my bone-strengthening Xgeva shots and eventually another 3 month scan. In between then I’ll try to live as much as I can.