Pathology Report is Back

Pathology Report is Back

The pathology report for my lymph node biopsy came back benign. And although I didn’t want more cancer, I do want to know what the hell is wrong. As things stand, I feel like I underwent another invasively complicated procedure for nothing.

I don’t know if anyone who hasn’t been miserably undiagnosed can really understand this odd mix of relief and dread I’m feeling right now.

There’s one more test to run, I think. But I can’t remember anymore what it was. Autoimmune shit? I don’t know, but I’m confident—just knowing my track record—that won’t find anything either. And I don’t know where that leaves me. Miserable? Without answers?

I need someone to swoop in and just take care of this.

My oncologist was reluctant to put me on steroids because it might’ve masked what’s wrong, but maybe he will now? Maybe that could help?

Again, I can sense people will be saying things like, “Yay! It’s not lymphoma.” But none of those people will be thinking about how this is my third biopsy on a third lymph node. About all the extra pain I have. About how I barely have enough energy to sit up.

And how I want to punch them all in the nose.

The only thing left (that I can think of) is to go back to my theory that this is viral. But how do I get that answer? People who say they have viral pneumonia or mono or whatever the hell. How do they know that? I’ve never in my life been told anything more specific than that I have a cold. Where are these miracle doctors who test and diagnose viral stuff?

Long-covid has crossed my mind, but it’s not COVID unless I didn’t know I had it. One of my handful of test results would have to have been a false negative since the pandemic. And I’ve been so careful anyway. Masks. Isolation. Vaccines. Evusheld. Because clearly I can’t handle cooties.

Oh fuckity fuck. It just occurred to me this nothingburger of a biopsy is going to cost me a small fortune.

I dunno. Fuck it.

Paypal | YouTube | Wishlist

Biopsy and Other Updates

Biopsy and Other Updates

All I’ve got are some random updates about the biopsy and stuff.

I’m LegXercise-ing today, but for a very short time. I have this instinctive tendency to curl up in the fetal position all the time due to anxiety, and now that I have a wound, it really takes willpower to open up physically. Plus it’s just good practice to keep stuff circulating.

I have this thing where I must try limited edition Oreos, and Dan got me these Space Dunk things. When I first heard about them, I was like “yuck.” But you know, I tried them for science (and because life is not terribly exciting right now). I’m a huge fan of the Pop Rocks rattling around in my head.

I finally pooped. Please clap. I had to stop all pain meds, so I’ve traded off one thing for another, but that’s the easiest way I can explain just how awful yesterday was for me.

The first test result has come back on my lymph node biopsy: nothing grew in the petri dish, but I have an excessive amount of red and white blood cells. So basically? No new information yet.

It’s Taco Tuesday. Celebrate accordingly.

Waterproof skin protection is cheaper if you type “tattoo” in the search bar. (They’ll nail you if try to buy it as a medical supply.) Bastards.

Well Poop

Well Poop

Well poop. I’m 72 hours post-op and not really having a good time.

I don’t have stitches, just some kind of skin Bondo, but every time I sneeze it feels like I’m going to split my incision open and turn inside out. I’m scared of the thing now, like the wound might betray me if I pull up my pants wrong or look at it funny.

The darkness behind my eyelids turned orange and started melting after a total of two and a half Oxycodone. I remember this from 2017. It was followed by me feeling like I was vibrating out of the furniture every time I sat up. 

Hello darkness my old friend.

But that’s not the worst of it. Nope. Now even the flatuence has stopped. I haven’t pooped for days. I know people overdose on painkillers—because the doc also prescribed me Narcan (for five pills!)—but I don’t truly understand how. I’m ready to launch these fuckers into the sun.

Last night I was patting my abdomen and yelling “Demons out!”

When I finally do poop? It’s over for you hos.

Yes, I’ve been taking Senokot as directed, but like shingles, my colon doesn’t care*. It doesn’t give a shit, if you will. So I’m at the portion of the program where I’d rather be in pain. It’s not unbearable, the surgical pain, but it’s not fun. 

I’m going to probably be a little bit grouchier than usual. If the constipation doesn’t kill me, Dan might.

The process for choosing a lymph node was supposed to be aided by ultrasound. (I say supposed to because that’s what I was told, but I was heavily sedated and don’t know what actually happened in the operating room.) 

Well, my left jaw and neck nodes are raging now. So were they under the wand or is my left side just mad that I sacrificed one of its own? Can’t say for sure, but the why doesn’t really matter, does it? The discomfort is the thing now.

Oh dear lord, my intestines just let out a low, slow, terrifying creak. Is it? Could it be?

Time?

Paypal | YouTube | Wishlist

* If you are fortunate enough not to see pharmaceutical ads where you are, this joke might not make sense. Also, get your shingles vaccines. The shingles are AWFUL. Ask me how I know.

Lymph Node Biopsy: Third Time’s a Charm Bracelet

Lymph Node Biopsy: Third Time’s a Charm Bracelet

Friday morning they cut out one of my lymph nodes (my third ‘node biopsy but first excisional one) and shipped it off to a lab somewhere for examination. I should have the results of the latest lymph node biopsy within two weeks.

In the meantime, I’m feeling pretty alright. I was prescribed ibuprofen and a few oxycodone—which I wasn’t expecting—for the pain.

The procedure was done under sedation. So the last 36 hours, I’ve been feeling cozy as the anesthesia wears off and my systems come back online. Only a little breakthrough pain between doses. 

Oh, and a lot of farting. My colon’s like, “Yay! We’re functioning again!”

The oxycodone makes me very drowsy, so I’ve been getting great sleep. In fact, last night was probably the best sleep I’ve had in 7 years. (I’m almost exactly 7 years out from my last surgery. You know, the brain one.)

Also, I realized something while peeing so they’d release me from the hospital: I feel more secure on a regular walker. So I just bought a used one of those puppies on Amazon for $22. That’s a freaking bargain! (I earned $18 in commissions this month, so it’s like I got it for $4. Thank you, you lovely people. I told you clicks help!)

If you’ve been around for a while, you know I did have the regular kind of walker after the 2017 craniotomy, but decided I needed the Rollator style with seat and then donated the other. (Dan has graciously not said ‘I told you so.’ Yet.)

The thing about the 4-wheeled walker variety? Good for sitting when you’re fatigued, but you need confidence that they won’t roll away from you. I don’t have a lot of that right now, and so I grip the brakes until my knuckles, wrists, and elbows are white. Which pairs nicely with my anxiety muscle aches. Too nicely. Both styles are great for different reasons, and I need both for different situations.

Anyway, did you know they’ve got these cute new charms for hospital bracelets now? Once a fall risk, always a fall risk I guess.

While going over the standard pre-op questions with the anesthesiologist, he was like “You still have the tumor?”

I was like, “Yeah. It’s a whole thing.”

Basically it’s in a spot no one was comfortable going too gonzo at with a knife. 

But the tumor was a rare enough tumor, they were eager to put a few cells on ice. They sold me on the research idea by also explaining they could treat it more confidently if they knew what specific mutation they were dealing with. So a neurosurgeon did a little scrape-y scrape.

You wouldn’t believe how frequently I have to explain that to non-neurooncologists. The only thing I repeat more is how to pronounce my last name.

But I digress. (That’s how you know it’s really me writing this post.) 

The lymph node was taken from my left groin. A spot not discussed during consults but the very location I dreamed about a few nights ago. Could be a coincidence, but I think I’m just really in tune with my body out of sheer necessity.

Anyway, I’m going to relax while I can. I’ll hit you all up for more clicks when the bills for this shit arrive.

Paypal | YouTube | Wishlist

Operating Room Day is Nigh

Operating Room Day is Nigh

Friday is Operating Room day. And this evening I’m a lovely mix of anxious, scared, and desperate. So I’m just going to stream-of-consciousness my thoughts.

They want me to bathe with Hibiclens the night before and the morning of the excision to avoid infection. Tonight I’m barely moving, so is that even possible?

I have to be at the hospital at 8:00 am Friday. Is that even possible? What if I can’t sleep again?

What do I wear? What clothes will I be able to manage?

Where is the doctor going to harvest the lymph node from?

Are they really doing general anesthesia? The coordinating nurse seemed to think so. Will I get a break from pain?

Speaking of pain, is it really not going to be that bad? Or is the doctor just bullshitting me?

What about the bathroom? Anxiety makes everything worse.

What if no one wants to take care of me after? What if I can’t get in the car?

What if the results don’t show anything?

What if they do?

What should I eat tomorrow? I need to have a couple of bananas there are a lot and they might get too ripe.

I don’t want to eat anything that will hurt me. But I also can’t make anything.

Should I get more weed?

I wish I had a dog for emotional support, but I’m not supposed to let pets sleep in the human bed the night before anyway. Good thing my cats are jerks. Makes that easier.

Please do something useful, frontal cortex.

Why is this bed so uncomfortable? Why does every pillow feel like a rock? Will I ever feel comfortable again? Would I freak out if I wasn’t in pain?

How am I going to pay for this? I’m still mad that RIP Medical Debt asked me how I felt about impending medical bills and when I moved the slider all the way to “overwhelmed” it said, “Sorry, we can’t help you.”

We could have better healthcare and better outcomes if we didn’t do this to people.

I want a glass of chocolate milk. Will that be a problem Friday morning? Or tomorrow when I need to do stuff?

I need to hydrate now, but I am tired of getting up all the time.

No food or drink after midnight tomorrow. Remember that.

I need clean bedding after my shower tomorrow.

It’s going to be 62° F tomorrow. That’s nice, but climate change?

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

***

Ok, that’s all for now. If you would like to support me, here are some links.

PayPal

Patreon (Not currently posting there but it’s an option if you prefer it.)

YouTube (Super Thanks enabled but just watching a video, commenting, liking, subscribing helps.)

Amazon Wishlist

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.

Pin It on Pinterest