This has been a crazy month. The new chemo plan started a week after my last blog. The side effects have been minimal. However, that “bladder involvement” I spoke of was a bit more involved than I let on. On 2/18 I had a kidney stent put in. My right kidney isn’t draining completely which can stress it, though kidney function tests are normal. The oncologist thought that the tumor might have spread to part of the urinary tract system…bad news. However, when the urologist put in the stent he checked things over and was not seeing what she feared…good news! I had that week off them the infusion chemo, but just started back on that today.
I also saw the oncologist today and she confirmed what the urologist said and was very happy about that. She also thinks this protocol might be working. To put it in very simple terms without too much TMI, while the tumor is still there, it was “different in a good way” upon examination today and there is a particular symptom that subsided that she’s feel may point to some success. She was confident enough to decide on two more rounds of these chemotherapies (since I’m tolerating them well) and then do the CT scan. Also, partly because any new clinical won’t be open quite yet after one more round and she wanted to spare my kidneys two bouts of the CT scan dyes, with which I heartily agreed.
I must admit, I am battling fatigue in general and “appointment fatigue” specifically and some frustration with the whole medical industry. At one particularly rough appointment I ended up having to repeat the whole 10-month saga to three different people in an hour and a half. The third person lead off the conversation with “so I see you had surgery back in March 2019…how have you been since then?” That was too much. I broke down. How the heck am I supposed to answer that question? It’s all there in my medical record, read it, people! Let’s just say the rest of the day went downhill from there. I don’t often give into crying about this whole situation, but I did that day.
I picked up the pieces the next day and focused on my life and what needs done. I can’t change the way the medical industry works, so it’s my job to figure out how to better deal with it when it frustrates me. I must focus on what I “can” do. After today, things are looking brighter and barring any major onset of side effects, my life gets to stay the same for at least 6 weeks. I can focus on work and my two upcoming photography shows (see my portfolio for more info). I even have one week, blocked out on my calendar, where I have no doctor appointments. Going to try to keep it that way!
Speaking of what I “can” do…I often get shocked looks when I tell people I'm a landscape photographer. I get it. I don't fit the mold of what a landscape photographer should be; fit, can hike for miles backpacking heavy big cameras and lenses, camping for days to get the shot and traveling to exotic places. Nope...I'm overweight. I walk, not hike, and I do a lot of photography from my SUV’s side window. I don't like camping and I'm mostly stuck in Ohio, at least for now. I've chosen a smaller lighter mirrorless camera system (and have finally learned to stop reading the "why I went back to a DSLR" blog posts). I found how I “can do” landscape photography, instead of focusing on how anyone else does it.
I don't fit the mold, and neither does the photo with this blog. It's not a "pretty" picture in the traditional sense. I like to take what could be considered mundane or "every day" and show that it can have beauty and value too. This blog comes out of a conversation I had with a friend a few weeks ago. They expressed some frustration about how the "messaging" around us, mainly TV and social media, can start to make us feel "less", if we let it. If we can’t look a certain way or do something like someone else they why bother even trying. We can also start to think do we really even matter?
Unfortunately, the messaging around us tells us to value the "pretty people" or the "extreme things” people can do. Too much of that and it’s easy to start focusing on "I can't" rather than “I can". Soon after that conversation I wrote the draft of this blog and a few days later a local artist posted an artwork on the Columbus area art Facebook group that touched on that very theme and then I also noticed a podcast from a friend dealing with this same subject. It was good to know I’m not alone in being concerned about this.
Unfortunately I feel like this even extends into the medical community, at a medical building I go to there is a photo mural of a bald cancer patient, but she's perfectly bald. Her eyes are bright, no bags under them, her skin is perfect. In almost year of treatment I've never seen a single cancer patient who looks like that. I know she's photoshopped. I know she's meant to be an inspiration. But honestly, I've learned not to look at that mural. I would love to see a more realistic mural of people with cancer doing what they've always done the best they can. It wouldn't be as beautiful in an aesthetic sense, but I think it would resonate with more patients and their families.
We may not be in a place to change the messaging but learning to tune it out is an essential and a lifelong process. Everyone, whether you are fighting a disease or not, has challenges and limitations. Don't worry about the things you can't do or be. Don’t fret if one day things are just too overwhelming. Pick up the pieces the next day and focus on who you are and what you CAN do!
People look at the outward appearance, but the LORD looks at the heart.”
1 Samuel 16:7
Next: Coming Soon!
- No Comments