You. Are. Scaring. Me.

Attention all medical professionals–doctors, nurses, especially those working in imaging facilities: your questions frighten me.

I used to think MRIs the most serious and nerve wracking of all imaging tests, but now I think ultrasounds are just as bad. I’ve had a few of those–first to find my breast cancer back in 2010, then all throughout treatment in 2011-12, to monitor my heart’s reaction to damaging cancer treatment drugs. The ultrasounds for the heart weren’t so bad; maybe because it was so clear to the techs why I needed the test. But my first breast ultrasound was pretty upsetting. Lots of questions, bringing in other techs to view the images, and just a general atmosphere of “something is wrong”.

The same things happened today as I had to undergo an ultrasound to find out what my worse-than-a-UTI problem actually is. As she applied the gooey wand, the first tech asks have I had many UTIs? (No, my very first was last September, and the second wouldn’t go away it seemed, and that’s how I wound up here.) She brings in the second tech.

I understand the second person is needed, in fact, I think my first tech was an intern who needs her work checked, even if she performed her tasks correctly. But I’m sure “Seinfeld” or “Friends”, or both, covered that issue of having something so bizarre or serious that other medical personnel want to see it. It was funny on those shows, but not funny in real life.

So the second tech begins waving the gooey wand and watching whatever images the inside of me put on that screen. “So have you had kidney stones?” Great, another question.

NO!

“Your questions are alarming me,” I said as matter of factly as I could.

“Oh we just have to tell the radiologist what you say–he’s gonna ask about it,” she chirps.

“But you are not recording  my answers,” I pointed out. Please, I cannot remember whatever I want when I enter a room without making a list these days. I do not expect any medical professional, with a million patients running around, to remember one darn thing. So, please, jot down my answer when you ask me a question, especially if you claim the info needs to go to another person.

Dead silence. Did not even bother to answer me.

I admit, I’m a naturally anxious person and I tend to let even simple things ruin my day, my week, my month. And a health concern is not a simple thing. So I’ve walked out of the hospital today completely worried. I’ve no idea when I can expect to learn about my results. Yes I have a follow up with the urologist in 6 weeks–but that is if all went well with this test today–and I don’t think it did.

It is possible I am imaging problems where there are none. Maybe I don’t like ultrasounds because the person administering the test is so close and I’m trying to “read” them. I cannot help myself. So when I’m asked if I’ve had recurring stones or UTIs, all I can imagine is that they are thinking stuff like: “OMG, her kidneys/bladder are a mess. How could she go so long without problems? Why did she not get to a doctor sooner?” And of course, as a cancer patient, even though no one has said “cancer”, I cannot help but wonder if they are thinking, “look at that huge tumor.”

In short, the questions scare me.

In addition to my own self-made panic, another, more logistical concern grips me. I realize that the urologist (or whatever doctor) writes an order for a test, but why is the other, relevant information not communicated to the poor sap who has to look at the images, interpret them and report findings back? Shouldn’t the people making and analyzing the images know what is going on with me? As in why on earth are they looking at my bladder and kidneys? What are the symptoms or concerns that put me in that room with them? Is this some kind of freakin’ treasure hunt or detective game? It’s as if the doctors are saying, here, look at this person’s organs and see if you can find anything wrong–but we’re giving no hints.

I confess this is a rather irksome issue for me. I cannot help but think back to my very first mammogram, that resulted in a false negative. I know, I know, I should let that go–after all, the tumor was discovered just a few weeks later, and I lived, so I should shut up about it. But humor me. I went to get that mammogram not because I had any symptoms, but because I had a strong maternal history, because my aunt was just diagnosed at age 50–a below average age for breast cancer. I was 38, below the current recommended age for getting annual mammograms. I was being proactive. So did the radiologist see my age, know the family history, and just blow off that big white spot as density, when it was really a tumor anyway? Or did that information not reach him, and he just saw 38 year old white female with no symptoms, and maybe he thought–oh they always have dense breasts, no worries? And please know, the tumor was not hiding IN the white area, it WAS the white area. As mentioned if previous posts, I have trust issues when it comes to tests and such, and this is why.

I know it would not change anything to have been diagnosed a few weeks earlier. What happened, happened; and I am still here. Maybe I’d be a little less angry, who knows? I am curious to know if background history gets communicated to imaging personnel, and if it is factored in. If it isn’t, um, is there a petition I can sign to change that? Maybe some patients think all that information sharing between doctors and medical facilities is invasive. Not me–I think of the very thick file that followed me at the infusion center, I think of all my discs containing images from various facilities. All of that is me, my story, and I have no idea what parts are relevant for this moment, this particular problem. Is that not why my records exist…in recorded format?

So, again, to those doctors, nurses, imaging techs: asking questions–and worse, not answering them, and how you behave, even your face, I’m over analyzing all your actions. Maybe most patients do that, maybe not. As a cancer patient, well, these situations take on a higher terror level for me, and I’d guess many other cancer patients. It doesn’t matter if YOU don’t say cancer–I’m thinking it. And even if it isn’t cancer–well, I’m in a center, getting a test, I’m thinking the worst. Please understand that.

And I walked out of the hospital today frightened.

Gumball Machine

I’m gonna take that infamous Forrest Gump quote and tweak it and turn it on its head: life is NOT like a gumball machine. I cannot just put something in (money, effort, etc.) and expect a specific outcome.

Over two weeks ago, I wrote and posted Unintended and Unwelcome Interruption, about why I’d not been writing or even commenting much in the blogosphere. Namely, I was struggling with computer issues and some urinary distress not to be blown off as a mere UTI. By then, those issues had been going on for a few weeks. And they did not end with that post. So yes, I’ve still been spotty about posting and reading new posts by my favorite bloggers—well, I can read them sometimes, but only able to “like” or comment at random moments according to activity and what machine was working at the moment.

The fall-out from the past two months is some unpleasant understandings. I’m not saying cancer was easy for me, but I knew, and realized all over again, I was lucky in that things went according to plan. The oncology team suggested, and we all agreed, let’s do chemo to shrink the tumor, then remove what it left (lucky lumpectomy!), then do radiation. Except for a few hiccups, as in a misdiagnosed Staph that delayed radiation, all went according to the plan, the timeline. Yeah, it took over a year—thanks to being HER2+ and needing a year’s worth of Herceptin—but everyone input the required efforts and actions, and the expected outcome was achieved. Again, I know that does NOT describe the cancer experiences of too many other patients, so yeah, I was lucky.

That does NOT describe my recent weeks.

No, I’ve fought and fussed with multiple trips to multiple computer repair services. A postponed appointment from the urologist before I even met him caused me to have an utter meltdown. I pride myself in applying processes of elimination and deduction to figure out solutions to problems. I do ABC and expect XYZ—and that just….never happened over the course of the past few weeks. If I were to play a film of myself and my recent behavior, I imagine it would look like someone running full steam into every surrounding wall and getting destroyed.

IMG_20140510_094633730

I’ve always known I have some issues with chaos and control, and have long planned to write about them, especially since cancer and control (or lack of) have left scars on my mind. My friend, who deals with chronic illness, and I joke about rearranging the sock drawer. When life events go awry and we know we cannot do anything about the events, we reorganize something, like the drawer of socks or other clothing. I like socks. I will group them all by when I wear them seasonally. The next time I feel out of control, I go and group them according to color and/or type. You get the idea. My life will be falling apart, but I can make the socks behave.

I think I’ve turned a corner, my issues seem on the road to being resolved. But, hey, I thought resolution was nearby two weeks ago with that previous post, and look what happened. I chastise myself to not count the chickens before they hatch. Still waiting to pick up one laptop, still waiting for medications and a test that could confirm what the urologists thinks is wrong—and I hope it is as simple as he thinks—as in NOT cancer.

But I am breathing a little easier. And I’ll leave the drawer full of socks alone today.

Unintended and Unwelcome Interruption

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.

 

Friend or Enemy?
Friend or Enemy?

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!