Here Comes the Sun

Here Comes the Sun

I had a dream last night that I was home from Friday’s lymph node excision and was feeling so good from the anesthesia I forgot I was supposed to hurt and didn’t know if the doctor had opted to take one from my armpit or groin.

Hahaha. As if. But it sure beats a nightmare!

The people who help us clean are coming today. (They come every two weeks.) I will try not to let my anxiety get the best of me during the hour or so they are here. (I frequently worry that I’ll need the toilet when the floors are wet from being mopped and that I’ll slip.)

I can go much longer without needing a break, but anxiety is not rational. In case you were wondering.

I feel a huge sense of relief when they are done cleaning. And we always get lunch delivered after so we don’t immediately dirty up the kitchen. Every other Monday things are kind of nice. They even make my bed, which feels like a treat.

This just in: cleaning is happening tomorrow instead of today. It feels like when a meeting would be postponed at work. Nothing really changes. At best you’re delaying the inevitable, but somehow it’s a relief. Not because the cleaning is a problem, but because I tend to stress about the tidying before so they can clean.

It’s been a week since there’s been sunshine, but I’m told by my weather app that around noon today I will be singing “Here Comes the Sun” like George Harrison. I can’t freaking wait. 

Thursday and Friday should be decent and above 50° F. That’d be nice. I need some less hurty days like Trump needs a campaign contribution. Plus Friday is the big day, and it’s just easier to do the medical stuff when the sun is out.

Mom and I have been using the LegXercise thingy a few times a day. I tried to set it up on my Rollator today to see if I could use it to work some kinks out of my neck, shoulders, and arms. That’s a no. I haven’t totally given up on the idea, but it’s definitely not made for that kind of setup.

It’s 10:37, and there is evidence of the sun. I’m out. Time to bask.

This is what my medical anxiety looks like

This is what my medical anxiety looks like

As I mentioned previously, in my attempts to free myself from at least some medical anxiety, I’ve been listening to Tara Brach’s podcast a lot. 

I heard her say that the reason writing or journaling can be helpful is that it moves obsessive thinking from the limbic brain and forces us to process thoughts in the frontal cortex. 

Is it truly helpful? I dunno. I am attempting to find out by blogging more frequently. (I stopped for a while because I was so exhausted, but maybe writing less is a luxury I don’t have.)

So, it’s experiment time, because this is what my medical anxiety looks like.

I’ve got a consult with a surgeon about these damn lymph nodes Thursday, and I’ve caught myself more than once obsessing over what I want to tell him, and what I want to know.

I realize why this happens—my brain tumor was misdiagnosed for a couple of years and getting to diagnosis felt like my burden alone. But knowing why something *is* doesn’t automatically fix the problem. 

I repeatedly remind myself, and anyone who will listen, that this isn’t my fault. There’s no perfect way to present a new doctor with my medical history. But that kind of logic is for people who aren’t stuck in fight, flight, or freeze. I’m not there yet.

So, here are the things I want to say and ask. Hopefully by writing them here, I will find a way to sleep tonight instead of rolling through my thoughts over and over in the wee hours. 

Because I answer some of my own questions, but I don’t remember my answers. Like, ever. And I just lather, rinse, repeat until the sun comes up. 

Not healthy. Not helpful.

Anyway, if you’re bored of this post already, please find something else to read that you enjoy. Shit’s gonna be about me (even more than usual) for a while.

***

Dear Doctor,

Please help me. When doctors hear I have a brain tumor, they are understandably hesitant to act. I get it and I’m not mad. However, I’ve been dealing with this one lymph node for a couple of years. I’m beyond over it.

The pain and fatigue are unbearable. I need to know why. The longer I go without intervention, the worse it gets. I’ve had 2 needle biopsies, a CT scan, multiple MRIs, and a PET scan. None of them have confirmed anything. My tumor is stable, so it’s not that.

I swear to God, even a healthy person would be exhausted by all these appointments.

My Dad had metastatic cancer in his lymph nodes. It wasn’t found until one was cut out of his neck surgically. We don’t know where the original cancer was because it couldn’t be found. Which led us to suspect it had been missed during one of his many sinus surgeries. So, yeah, I am a little anxious, if I hadn’t mentioned that already.

Will you be checking for anything else? Despite my fears about lymphoma, I am, with my limited knowledge, leaning more toward an infection diagnosis. In addition to past test results, here’s why:

I have a prescription antiviral on hand for cold sores because my immune system ain’t what she used to be. I got a cold sore recently, and took the Rx. It cleared up the cold sore, but it also reduced the size of my lymph nodes and my fatigue improved slightly. Improvement, though still not enough for my satisfaction, was much better than the times I was prescribed antibiotics.

I don’t know if that’s relevant, but it feels relevant to me. So I ask if testing for anything else is possible because my oncologist said ordering blood tests would be a shot in the dark for him.

What is the procedure for pain meds after the surgery? After my brain surgery I was told I couldn’t get more pain meds, which is fine. But also something I need to plan ahead for. 

I didn’t wean from whatever I was on—just took it as prescribed—and had to quit cold turkey. My intestines were very angry about that, and I’d like to not repeat it, please.

Sincerely,

Emily

***

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Just Don’t Call Me Lumpy

Just Don’t Call Me Lumpy

I just finished a mug of hot chocolate. Dan had to make it. I can carry some things on my rollator seat, but if the vessel doesn’t have a lid. Hell, even if it does, I can (ok, will) spill it and make a huge mess.

I’m extra tired today. I didn’t sleep at all last night, so around 9 a.m., when anxiety had my heart racing and my shoulders were tensed all the way up to my ears, I had a half a Xanax.

Xanax works, though it piles on the fatigue, which I already have buckets of. But if I go over 24 hours without sleep, I opt for the medical intervention. So I’m once again writing from bed with my cell phone nestled in an overhead articulating arm. I’m saving my energy for reaching the toilet in time. I won’t be able to do much else.

Yesterday was an oncologist appointment, and we discussed how it was good news the biopsy results came back negative, yet extremely frustrating to not know what’s going on. At one point doc said we might need to get someone smarter than him on the case.

He was both self-deprecating and honest about his limits. Doctors who acknowledge they aren’t all-knowing gods give me hope.

So at this point the plan is to harvest a lymph node for further pathology. Who knows, once one lump is shipped off, maybe the others will get scared and fall in line. All I can say with certainty is they are all really pissed about something and they’re making me absolutely miserable.

I ran through a long and extensive list of “could it be” questions with the oncologist, and the answer to every last one of them was essentially “I doubt it. Never seen that before.”

And this is why my anxiety is off the charts. Medical limbo. Again. In the images from recent scans, it still looks like lymphoma. Doc mentioned there are medicines that can cause a pseudo-lymphoma, but I’m not on any of them, so… infection?

Infection is possible, but there’s not a blood test that can be ordered without a whole lot of guessing. “So it would be a crapshoot?” I asked. “Yes,” he said. He needs to suspect something first. And. Well.

*shrug*

The ghosts of all my inconclusive tests are already haunting. The bills are accumulating.

Consult with the surgeon—not the actual surgery—is next week. It’s likely they’ll take an axillary (armpit) node because it’s just easier to do. The mandibular (jaw) one that started this most recent nightmare is kinda hard to get to and there’s a potential to screw up the nerves there.

For those keeping up at home, this journey started last March. But I’ve had lymph node issues, including two mostly unhelpful rounds of amoxicillin, dating back to 2022. 

I’m really tired of appointments and tests and the physical poking (it freaking hurts, yo) but there’s no other way to fix anything until they know what they’re trying to fix.

Thanks for the lovely and supportive comments and for the wishlist gifts, folks. When I know more, you’ll find the info here.

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