Some Days are Grey and Cloudy

I’ll warn you in advance, this post is likely not going to be all sunshine and roses. Some days, while doing your best, the more difficult thoughts seem to take over the flow of thinking leaving you not at your peak of positivity. I’ll say that’s ok, because it is and frankly it’s part of reality. That doesn’t make it any easier to pull out of the looming funk and get back on the upbeat horse and ride again.

These last few days have been a roller coaster of emotions and anxiety wondering about where I’m going next with the latest in my fight the beast within anti-cancer efforts. Monday I was told my EKG could disqualify me from the clinical trial participation, but we had a chance to try a new EKG and see if that fixed it. After some back and forth getting the order in to a local hospital I went in and did my jumping jacks to retest and hopefully adjust the numbers.

All day Tuesday I kept checking in, wondering if the new EKG was within accepted range. I try hard to balance between being the squeaky wheel to keep things moving and becoming that annoying patient they don’t want to talk to and avoids taking their calls. While I’m not worried about creating offense because frankly this all really, really matters, I also understand there’s a fine line there. So I make my inquiries then try to be patient and wait. End of day Tuesday I get ahold of someone else in the Mayo only to find out my trial director/account manager wasn’t in that day. So nothing happened.

Wednesday morning I get an email that EKG was received and they are analyzing it. Good. At least things are in motion. Midday I get a call from the doc saying yes, the EKG looks better and the number should be good. Wahoo! Well, kind of wahoo. He’s happy - as much as a very clinical and even keeled doctor gets - that it worked, but reminded me now this has to be resubmitted to the company sponsoring the trial again for their approval. So…waiting is again the name of the game.

The rest of the day, nothing. No new news now Thursday morning yet either. Ugh.

It’s tough waiting. Especially when you know there is this foreign invader inside you growing unabated, even seeming to pick up speed with every day. It’s tough knowing your life is on the line, and every day really does count. Even tougher when you have a constant pain in your side, and you know the source of it isn’t good and not just in your head. When the pain is forcing you to rely on pain meds nearly every day now just to keep it at a level that doesn’t impede normal function. It’s tough facing that constant reminder of a reality you would rather avoid.

Denial is a happy place to be until you just can’t deny it.

That’s the fear talking. And while I’d like to say I don’t get scared, that just isn’t true. There’s a lot I’m not afraid about. This isn’t fear of death talking, rather more like fear of what is coming. I fear knowing I won’t be able to do even what I do now much less what I used to do without thought or care. It’s fear of the increasing pain after an episode last week of prolonged debilitating period of pain that seemed like a foreshadowing experience I’d like to forget. It’s fear of failure in something to wish ultimately I don’t have control.

Fear is a terrible motivator. Anything negative just isn’t what I need or what any of us need to use. I know that, but again sometimes it’s real and we either have to cope with it, accept it, or find a way to replace it. My preference is replace it, and that’s what I usually do in my process of working it out in my mind, accepting what I can’t control and making the most of what I can do to make a difference. But that doesn’t mean I have those moments of feeling the fear and being faced with the choice of how I deal with it.

This was present in my mind and in evidence in my morning workout. Today was my third day of spin class this week. While I’ve told myself I need to switch some of my physical efforts and maybe lessen my spin classes, I still get up some mornings with the desire to go to some work so I go. I crave how I feel better through the day when I’ve raised my heart rate and achieved some physical goals. I find reward in hitting those numbers I know I can achieve if I just keep pushing, putting forward that effort. It makes me feel…alive.

This morning I knew I was pushing my limits a little. At the 35 minute marked I started to gas out. My quads were losing energy and signaling to me they had done what they can do. Most mornings I can dial back a little, actively recover and find that second wind. Today it just wasn’t happening. That’s when the fearful thoughts started to kick in. Without wanting to, my numbers started to drop. I just didn’t have it in me to maintain the elevated output I am accustomed to. I need to accept that on some days that’s ok, because it is; but that is easier said than done. Because I’m afraid.

I’m afraid that when I accept that I can’t do what I once could I’m also accepting the inevitable future decline. I’m acknowledging that I’m slowly failing and will ultimate succumb to this nasty beast. It’s allowing that difficult ending to become more real, and closer than I want to believe. It’s an acceptance of knowing that I’m dying. I don’t want to accept that, but sometimes the reality of it smacks us in the face and is forced upon our consciousness by circumstances out of our control.

Man that sucks. All those thoughts rush through my head in a matter of minutes. I chew on it and it makes me angry. So while I have a flood of excuses run through my head of why it’s absolutely ok for me to step off the bike and say that was enough for the day, instead I push back. I remind myself it’s fine that I might lose a few tenths of a mile per hour on my average for the session, just keep spinning. Keep moving those pedals with as much effort as I can muster and be happy I can do do at least that today. That is not just acceptable, it’s a win. I keep up the best I can do for the duration of class. And then I do one minute more, because that is my personal reminder to myself that I can do a little more and show that I’m not dead yet. I’m still living.

I’m still very fortunate to be in good physical shape overall. Even in my “reduced” capacity today I still registered 26.2 miles on the spin bike at 23.8 mph. Sometimes I tell myself just quit bellyaching and be happy with what I could do! That is definitely something to celebrate, not get upset over having an off day. And yet, it’s all too easy in my current circumstances to place more meaning to little things like this. It’s all too easy to let my productivity for the day be shot as I stress over waiting for critical information instead of making the most of every moment.

Realize this isn’t a cry for help or desperation or even a whoa is me post for sympathy. It’s not letting the positivity die off early and resign to my fate. None of that. I offer it only as a peek into a short window of time that is part of the reality of living with a serious health diagnosis. I realize many have it much worse than me, both in their here and now and what the future holds. But this is a little bit of my reality and the feelings that go with it. I realize that so many adversities are hitting every one of us, and in each of us we have to find our ways to accept the reality of feeling the pain, stress and even desperation that it can create, yet also finding a way to work our way through and find our best way to deal with the here and now and hope of something better.

Today I still wait for word on whether I’m going to be accepted to the clinical trial and the hope that this new drug treatment might give me improved results taming the beast. The news will come. And when it does we’ll move forward either with the trial or pursuing whatever option is next if the trial just isn’t going to be available to me. Because..what else am I going to do?

Some days are just dark and grey, and we can still find a way to live in that with peace and happiness even in small things in which we choose to focus. Heck, I grew up in Washington State and learned early on you gotta find a way to enjoy life in the grey and cloudy. That’s a good portion of the year ;) I even just went out to try and take the dog for a walk to get the blood and thoughts flowing. A quarter mile in mother nature decided to remind me it’s also dark and cloudy and started soaking me with rain. We hurried back into the respite of the warm and dry house. Little dog agrees a short walk was good for today. Maybe he gets it better than I do.