Sunshine and Brain Masses

Writing has been on my mind, but life and mood has had other plans. I think part of me has been afraid to open this window because I don’t have a clear idea of where I want a blog entry to go. However, this weekend was rather eventful and I’d like to have it documented for my sake in more than a FB post, so…you’re welcome?

As always, art update first: I have a piece in the local Women’s Art Show in the cafe uptown. Of course in my usual style, I was late to get anything together, but got in in under the wire despite a great deal of technical difficulty. I ended up printing black and white and am pretty happy with the results, even though I didn’t even have time to mat it….

I’ve STILL been rearranging and fixing up my art room. I finally have my collages back on the wall and I moved shelving from the basement to the closet so I can better organize all of my ‘re-purposed’ frames…Then I decided to take out the closet shelves, too, for more room. I’m pleased with the results because I can easily see and mostly easily access the frames without having to take out stacks to get to the ones I want.

Here is the “final” rendition of the art room, with my collages back on the wall in a more intentional fashion, and my mantel finished. I am in love with this space, and enjoy immensely just sitting and looking out of the window or at the walls.

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20200305_160221Of course, the rest of the house is still not up to standards, but it’s getting there bit by bit. It’s been so nice to be able to deep clean and organize at my pace- to have the time and energy and emotional fortitude to keep working at things. In general, I’m far less overwhelmed with life in general and the depression is staying in a manageable zone, although the anxiety is out of pocket at many times throughout the day. It’s been increasingly present lately, but when I’m able to medicate it stays at a reasonable level, thankfully.

So. This weekend though? Ok, so, I’ve been struggling with headaches again, as well as joint/muscle aches and pains & swelling in my hands and feet (loosely diagnosed as possibly fibromyalgia just as an initial stab in the dark) and gastro issues (most likely related to an ulcer). Then on Friday, my left eye started getting really red and by Saturday was just completely bloodshot (although not painful until after I removed my contacts). Also, I was experiencing bouts of dizziness and just was feeling totally overwhelmed with all of these symptoms hitting all at once, but I didn’t want to go to the ER because nothing was especially worse than it has been, just happening all at once. So I contacted my doctor’s office after hours line, and my PCP just happened to be on call over the weekend! That was a lucky bit of…luck. She recommended that I go to the ER, which I did.

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Only visible symptom

So, I got there around 5pm and they did a CT scan and diagnosed me with cystic neoplasm of the brain and he was worried about the placement of the things on the scan, so he insisted I be transferred to Shadyside hospital in Pittsburgh so their neurosurgeon could better diagnose. Several hours later, the ambulance arrived (because he wouldn’t let Pam drive me, which in retrospect was a good thing due to how long things took even being a direct admit to Shadyside ER). We got there around 4am and hung out in an ER bay for a few hours to finally be admitted upstairs around 6am. They did another CT scan as well as bloodwork and an MRI without and with contrast. Eventually, the neurosurgeons came in and was like “let me sit down…” at which point my stomach dropped. He explained that the MRI showed a mass pretty deep in my brain but, unlike 99% of the cases, he was unable to determine what it was from the scan. Like, at all. He was perplexed and seemed really interested by the mystery of it (yay me?). He sat and talked with me for quite some time, and seemed to be listening closely as I babbled about all of my current symptoms and previous issues (such as the MRI I had in 2017ish for headaches that showed a cyst thing that my neurologist wasn’t concerned about at the time…). Basically, he wants me to follow up with a neurologist and an ophthalmologist as well as obtain all of my previous pertinent records and then get another MRI in a month. Then he wants me to come to the clinic at Shadyside so my case can be further explored.

I also met with the oncology team who seemed relatively certain that whatever it is is benign, because the scans showed no other masses in my chest or abdomen. So, that’s good news. I’m not totally confident they can make that accurate of a determination about something that can’t be identified in the first place, but whatevs. So, getting discharged was a clusterfuck. We asked after the neurosurgeons said I was clear from his vantage to go, but were told the primary team had to be the ones to discharge me. So after meeting with the oncologist, I thought I was good to go. Turns out it was just a Physician’s Assistant and I had to meet with the Primary of the Primary team. Ok. A few more hours and she shows up and clears me. Time passes. I patter out to the nurses station and my nurse is totally unaware that I’d been seen or given the go-ahead to be discharged. Eeesh. We finally left around 430pm and got home around 6. I hadn’t eaten a real meal since 6pm on Friday night, and had only had some oatmeal on Sunday morning after I was admitted. I had gotten in some cat naps and dozing, but Pam had been awake just about the whole time from Saturday morning to Sunday evening! It was a long few days. I crashed hard about an hour after we got home, and today was much better. The weather was spectacular and I spend the day with my pup outside gardening.

Yesterday was also my birthday. I’m now 41, which is super weird. Emotionally, I have experienced some of the highest highs and lowest lows in the last 2 years. If my life were a statistical chart, the median would be be higher than it has ever been. But the highs and lows are pretty drastic. This could be because I’m no longer under the numbness of depression constantly, which allows for feeling all of the other emotions. So the fluctuation may be perfectly normal, just not something I’ve experienced in a long, long time. Physically…well. That’s been basically a shit show. Today was awesome- I had energy and the weather was perfect, and I spent hours doing yard work. But already, my body is screaming its dissent about my activity level. My hips, which I’ve never had an issue with before this past year, feel like I shoved metal stakes in at all angles when I move. My elbows hurt. My elbows. Seriously?? It’s very frustrating and hard to explain because the response I seem to get most often is a rolling of eyes and telling me I just need to move more and get back in shape. Well. Right. But it feels like trying to learn how to walk on a prosthetic before the stump has even begun to heal. There might be a way, but I don’t know it and I don’t feel, with all of the other issues going on, that I have the willpower to begin such an endeavor.

That being said, while I am not happy to find out I have masses in my brain…there is some validation. To be listened to by doctors and professionals. I struggle a great deal with believing my symptoms, even physical ones, are real unless other people can see them. I will literally be crying in pain from a migraine while berating myself for not getting more done or working harder. I’m a little bit ridiculous sometimes, although have gotten better at trusting that what I’m feeling is real and needing less outside validation to believe my own brain. It’s a very weird place to be, my mind. And no one can ever be in anyone else’s mind, so who’s to say if my experience is typical or atypical, truly. I am enjoying becoming more confident in my truths as I feel them to be and I am eternally grateful to the people in my life who have supported and continue to support me through all of my highs, lows, sane, “crazy”, and in between times as I work towards some sense of stability.

Perhaps one day my blog posts will be more focused and informative, instead of rambling and round-abouty.

Today is not that day. 🙂

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One thought on “Sunshine and Brain Masses

  1. Hello dear Holly, I only see email about once a week, sorry to not respond til now. First you absolutely did right, and you nomw know it. Second it ‘s scary anyhow. Hold on til you know more, and keep going to that garden….judy r

    Like

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