Not In Nottingham

Writers Note: I wrote this a week ago prior to heading out on a wonderful Spring Break trip visiting with family and change of routine. My overall energy and health have been a bit rockier over the last several weeks, so I think that may have played into the tone of these thoughts. I often write up thoughts and never post them, figuring it’s either not upbeat enough or just more of the same so why post it. That said, I’m trying to go ahead and share more of what I’ve written even if it was just for myself. Too often my posts are not being seen by friends because if they are not commented on, Facebook decides fewer people should see it so I end up having many people asking why I haven’t posted recently. So goes social media algorithms.

Periodically I have people ask how things are going, and it’s always a bit of a thought process on how I want to answer that question. How much do they really want to know versus just asking because they are nice enough to inquire? I know most will say they want to know the real situation, but honestly I think most of us want to just know that we’re all getting along with what life throws at us, and we’re all doing our best to find the happiness and good in each day.

And that’s true. For me most days revolve around that exact desire, to just make the most of the day and hopefully put the highest priorities ahead of those lesser ones that seem to grab our attention. I work with good people, I have great neighbors and friends, and an even better family both immediate and extended. So when people ask how I’m doing, I usually say “alive and kicking” or “pretty well overall” because I am.

But we all know that life gives us ups and downs. Those can take place across a week, several weeks or months, or even within the same day. In the last year and even more so in recent months much of that feeling of cycling up and down revolves on how I feel physically, and how that impacts me mentally and emotionally. My medication is beating on my insides every day, but the side effects seem to ebb and flow a bit in on how much I feel them.

Fatigue is a factor every day, but some days I work a full day and feel fine. Others I have to leave home early and I’m pretty checked out and headed to bed early in the evening. Some days I feel full of energy and power through my workouts. Other days my intestines gurgle with discomfort and all the things that result as I’m sure you’d rather me not describe. Some days I’m nearly passing out whenever I get out of a chair, seeing stars and a shrinking black hole closing on my vision.

Gleevec has a long, not-so-glamours list of possible side effects, of which I’ve experienced most of them to some degree, and continue to on some key ones. It makes me retain water, which shows up around my eyes making me look puffy and tired (which is probably true), which I try to drain out with intense workouts like spin and hot yoga. I feel my best each day after these sessions.

Most days I start off feeling pretty good about halfway through my workouts, then attack the day with that momentum only to taper off in the afternoons relying on my natural stubbornness and desire to act as normal as possible. To get through most days I talk a lot about my healthy habits, focus on my healthy eating and micromanage my physical efforts because that’s something I can control in a situation where there’s so much I simply cannot.

No Different, But Different

I’ve had this conversation with many friends about how the reality of this up and down cycle is the same for all of us. Sure my situation may be somewhat different than others, but it’s not a competition. My challenge is no worse or better than most everyone. Sure I know some specific reasons why I might be worse or better at any given time, but others are experiencing their own challenge, and to them they likely are feeling just as difficult for them. Whatever that challenge may be for someone else, how difficult it may be is not mine to judge, because it frankly doesn’t matter. In that very moment it may feel insurmountable to them, or a greater challenge than something I’m currently experiencing because of how I feel in that moment.

Even a small hill can seem like a mountain depending on your perspective and how you feel looking up at it.

So when someone says how have been you been feeling, it can be tough to answer. Overall, I’ve been pretty good because I’ve been able to keep with my daily exercise, my food intake has been clean vegetarian and overall giving me good energy, and my sleep (until a couple of days ago) has been relatively consistent. So my answer is usually “pretty good, thanks.”

But the reality is physically this week was one of the hardest I’ve had in awhile. I threw out my back last week and the pain has continued daily with very little respite. Sunday my lymph nodes in my neck swelled to painful levels and my entire neck and throat were constricted to the point that swallowing and turning my head was difficult. I attacked that with more vigorous workouts and figured I was fighting an infection. Fortunately they resumed normal size. Wednesday night I had an unsettling event where my urine turned dark red. Not good With everything leading up to that I began to really work as I headed to GoogleMD my way through what that might mean. Possible kidney damage or liver problems, which are very possible with my drug intake.

Ho boy. Of course I slept wonderfully that night…not.

All I could think about every time I woke up - which was frequently - was that maybe surgery was coming sooner than later because some organ was in trauma. Maybe the tumor had invaded a kidney. Maybe the liver was breaking down. Maybe it was a fluke and due to some supplements or something I was eating. Yeah, that’s when I don’t fall back to sleep very easily because my brain doesn’t shut down.

By the next morning everything appeared clear again, but I called the doc anyway to see what they thought, and of course they wanted to have me come in and do some test. Later that day all tests showed I was ok and no infection was showing on the scans. Good and lame news all at once right? Good that no infection was detected, but no explanation for that?! My best guess is something was clogged up in the liver or kidney and let loose all at once. Hopefully it was a positive detoxifying moment. That’s what I’m telling myself for now.

So…that was fun.

Sometimes the Ups, Outnumber the Downs

So that’s a peek into on of the harder moments. Usually it’s not that drastic really. It’s like the rest of us where we have hard days and better days. Some great days and some crappy ones. Usually we do ok when we don’t let outside influences overwhelm our ability to see the good and stay positive, right? That’s the way I try to look at it, and mostly it works.

Each day I look forward to those first couple of hours when I’m getting my physical body moving and mind awake and alert. From there it’s a matter of tackling what the day throws at me. Some days are exciting, some not so much. But most days it’s about finding the enjoyable moments and getting to the end of the day where I get to spend some time with those I love most and calling it a good day. Those are the ups, no matter the downs. I’ve been trying harder to cut down on some work in order have better quality time with my family and to make some good memories whenever possible.

I’ve failed on that cutting back part a bit, but slowly I’m getting better.

It was a tough choice to make, knowing that contracting instead of my salaried position would further cut back on on finances, but that’s where choosing what is best is not always easy. Fortunately Heather has made this possible with her employment, insurance and ongoing support in our choosing to do what is best for our family and for me right now. Eventually I likely will have to make even more changes and find other ways to generate income, but for now this is working.

The goal overall is to make those ups more frequent and smooth out the downs. Find more good during the times of day where it matters most, and take the time needed elsewhere to get the rest, health and peace of mind in line.

So maybe it’s not in Nottingham, but mostly I think we are making it happen in our life right now.

Living In Limbo

Probably one of the more difficult aspects of the situation right now is feeling like we are in a holding pattern. While I’m diligently taking my meds, supplementations through other wellness advice, eating healthy and working my body hard physically all with the desire to make my best effort, I have no idea if this doing any good or if it’s too little too late. We are a couple months past the surgical oncology consult, which puts is basically a couple months until the next scan. Until then we can only hope for something positive in that scan that shows we are doing some good. What that good may mean, we have no idea. Some good still may mean that it’s time for surgery. Some good may mean we are ok to push of surgery and keep trying to eek out a little more benefit. Some good may not be reality, and the next scan may show no change. What then? No idea. It’s a judgement call, but the professional and by us personally.

What a big bunch fat of I don’t know.

After that last scan and the resulting doctor consults, it took me quite some time to get my head back on straight. I needed the old check up from the neck up as it is said. There’s plenty I still wrestle with, and while I don’t mention it publicly, I’ve got plenty of things up in that head of mine that are unresolved and in tougher places. But I try to compartmentalize and for better or worse some of that gets kicked down the road while I focus on healing myself physically even though In know much of it can and likely is tied together in some respects.

For now I focus on taking it one day at a time, then repeating my routine each week in a familiar cycle of daily workouts, working at work and on projects, then home to the family. Those weeks seem to speed by and have really made this last couple of months go by quickly. That’s good, but also scary because it means I might be getting cut pretty darn soon.