I have not written/posted recently, and my commenting and reading others’ posts has been limited of late. This is not by my choice. I hope to get back into it soon.
I tend to let myself get distracted, and I tend to let things get in my way and stop me from moving forward. In little ways and big ways. “Let me get through college, and I can begin life,” I once thought . “Let me get a better job, and I’ll think about that aspect or next step in life.” Not wanting children, I did not have that clock ticking in my head, and I’ve taken too long with other things I wanted in life. What is that cliché about life happening while you make other plans? Yeah. I know this about myself and am certainly trying to change my ways. So, I keep thinking, let me clear this thing, or these things, up, and I’ll get back to my routine. Well, that is bad thinking.
My first, current major obstacle is a new health concern. While it does not seem to be cancer-related, it is still a serious concern. A UTI that just would not go away is not really a UTI. But I still have troubling symptoms and now need an urologist and more tests. I’m not happy to say the least. Logically I understand having cancer that one time does not give me a free pass on all future health concerns. I will likely encounter heart disease, blood pressure medication, and kidney troubles—all more common in my family than cancer—before I die. I just don’t want them yet. Can’t I just breathe free a couple more years please?
I’m on pain medication which makes me fuzzy—a big obstacle to writing. On top of that, of course I want to obsess and worry about the upcoming doctor visit. I have managed to avoid reading up on likely diseases on the internet—and that is not because I have great willpower (explanation coming, just keep reading). So instead I fixate on preparing for battle with this new doctor.
I’ve struggled with this not-really-a-UTI for a month now and so my frustration is high. My cancer experience left me very distrustful of doctors, and I feel like I’m in a bad place again. First, as this blog has documented, a very large tumor that appeared on a mammogram image was failed to be diagnosed. Then, in the middle of treatment, I picked up Staph during my lumpectomy. The PA that worked at the cancer center where I was treated, who is supposed to diagnose and treat all the cancer patients and our whiny complaints about side effects, really dropped the ball with me. She kept insisting I had shingles, when a quick internet search told me my symptoms were not in line with that illness. The whole time I was supposed to be prepping for radiation—being mapped and marked, and instead I was delayed in moving forward with treatment. I kept walking in to the center every day—the medications prescribed were not working, when I was told that my rash should clear up in a few days. Finally, after about the fourth or fifth day I was in the examination room again, pointing out that the rash was actually getting worse and that PA walked out on me, claiming I’d not given the meds enough time. The radiation oncologist happened to be in the room, and took a sample of the pus coming out of one of the bumps (it looked like my torso had come down with severe teenage acne). Few days later, well, what do you know? Staph. The PA did not even apologize or admit her mistake when she told me over the phone my real diagnosis, and to get to the pharmacy for my new, correct medication.
I will never forgive her for that. One would think the false negative mammogram would’ve taught me the need to be alert, to advocate for myself as a patient. I think the cancer diagnosis itself rocked me so hard I did not learn that lesson then. But I learned it hard the day I learned I had Staph that will pop up in a rash on occasion, forever. Medical professionals are NOT infallible and make huge, sometimes horrible mistakes. During cancer I was ashamed to think I’d not known my body well enough to know something as major as cancer was wrong. I thought that made the doctors think me sort of stupid. Never again. I know my body now. I push and advocate hard for myself. I NEVER enter a medical facility without my “cancer bag” full of discs, documents, and my laptop to take notes. I gird my loins and make the medical professionals listen and HEAR me. I have to. My experiences have taught me this.
The second obstacle causing my blogging absence makes me think I am crazy. In the good ol’ days, the classic Murphy’s Law problem was: car makes weird noise, owner takes it to mechanic, and car stops making the noise. The modern version of this scenario is played out with a laptop. My primary, work and fun laptop keeps, just….disconnecting from the internet at random, or at inopportune times. Right in the middle of writing a comment, or a long email. And all that was written is just gone. Forget researching my current medical concerns online. I keep hauling the machine to a local computer repair business. The damn thing is fine they tell me. They played online games all day with it, and it never disconnected once. Must be the ISP or network, they tell me. Except it isn’t, because my crappy, tiny backup laptop I use to access my business documents connects just fine. So does my smart phone. If an ancient piece of crap, mini-laptop and brand, spankin’ new phone are connecting, then it just ain’t the ISP. I report this to the computer fix-it guys and I get the glassy, “oh, she’s crazy” look. I only hope this post I’m writing makes it onto the internet. We’ll see.
I love the internet. I see so many wellness and airy-fairy blog posts encouraging folks to disconnect for a few days. Modern society, kids especially, these articles claim, we just spend too much time on electronic devices.
Hogwash, I say. I spent more than the first half of my life not connected to the internet. I love it here on the interwebz and I’m not leaving. Here, I laugh my head off as Justin Timberlake offers me a special holiday gift in a box. My president is Kevin Spacey/Frank Underwood. My spiritual leader is George Takei. My pets are Grumpy Cat and Moon Moon. I was having a rotten day a few months ago and was roaming my Tumblr dash and found a disco version of the “Jaws”. If I’d never had stumbled on that, I wouldn’t know I needed it, but I know it exists now, and yes, I need that stupid version. I also love to access the recoding of Freddie Mercury’s isolated vocals of “Bohemian Rhapsody” whenever I want, because for me it represents one of the truest forms of beauty I’ve ever experienced. No, I will never disconnect from the internet for wellness. For me, wellness IS the internet.
So writing a post has become tricky. I can write it, but when I go to post, well, whoops—off the internet my laptop goes. It seems to be doing better today, so I’m risking a post. If you are reading this, I was successful and will resume my rant-y posts as soon as I can!
13 thoughts on “Unintended and Unwelcome Interruption”
Guess what? I have also had the elusive uti that was not a uti. Bleeding and blood clots and lots of pain. I went to the urologist and they wanted to do a scope and abdominal ct scan. I opted for the ct scan which came back clear. Took uti meds again. Drank 900 Gallons of water. I skipped the scope and got better. I have heard of lots of Utis lately from bc patients. Odd. In would take it step by step and not let them walk you into 9 million dollars of tests. Just sayin!!
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Oh sounds awful! Luckily, I have no bleeding. Thanks, I’ll make sure they don’t get crazy with testing.
Good…hope you are feeling better girl. These gifts that come from cancer/chemotherapy just keep on coming! Phooey!!
well, dammit, between the UTI symptoms being a big fat question mark, and the pesky hijinks your computer is exhibiting – you must think, “what’s next???”. thank goodness you’ve changed over care facilities and that stupid, insensitive, and neglectful PA is no longer in the picture. nothing like being jostled and shaken to make us have to be our own advocates, yes?! I am sending you big hope with every fiber of my virtual self to have these truly miserable and frustrating problems solved – and FAST. you know I love you, and would bear it for you if I could.
Ha ha, it so funny as I read your comment about how I’ve left my old cancer treatment facility behind–I just did the same with computer services a few hours ago. I have to give up this machine again (probably) for more fixing, and yes, I grumble, I need to think about a new one (this laptop has been trouble since about 2 months after I got it). But, when I sought out other computer services, I’m glad to report: I think I found some folks who HEAR me!
Aww, thank you Karen, and NO I would not allow you to bear anything for me. What you do for me is indispensable: you listen and you believe me–unlike some computer folks who seem to think I hallucinate!
I only hope my next doctor visit, I get the same service and listening. Or I will bore him with my laptop story! Ha ha!
Yes, wouldn’t it be great if after cancer we’d get a free pass from any other health-related issues, at least for a while. Sorry about your latest medical frustrations and gosh, you’ve had more than a few regarding medical issues. My goodness! And then the laptop stuff… I’ve seen those “oh, she’s crazy” looks too… hate them. And yes, I’m like you, the internet is my wellness. I look forward to your ranty posts whenever you write them.
Thanks Nancy! Yes, I demand (ha ha) no new incidents with my body and my computer for a year! Hear that, universe?
Hey, worth a shot….
I bet it will be extra rant-y on my blog for a bit! Thanks as always!
Sorry to hear you’re having to deal with troublesome medical issues, whether or not cancer related. And pesky computer problems on top of that! I can certainly relate to your comments about having to be a good advocate for one’s self when interacting with the medical world. Somehow it seems that when these mistakes and misdiagnoses occur it’s often when someone less experienced is standing in for a doctor. I’m not sure what the solution is but patients need and deserve better.
Thanks! The PA and I had two prior run ins, and the Staph issue was the last straw. For me, at least in the incidents with her, it comes down to listening and hearing the patient, and to entertain the notion that the problem just might be something other than what the previous 99 cancer patients had. She often failed to think outside the box, and sometimes that needs to happen. I get that most cancer patients are shocked at first might think a side effect must be unusual, when the fact is it just new and unusual to the patient. The center did great work in prepping patients to be ready for what happens. But, every so often there is an odd or less common effect. That happened to me a couple of times–no big deal. But it would’ve been nice to NOT be dismissed before having someone at least consider maybe things were not as “assembly line smooth” as the center tried to make it.
I just looked up the Jaws song you mentioned. Awesome. Thanks. 🙂
Ha ha you are most welcome!