New Disease Coming Soon

New Disease Coming Soon

A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.

My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.

He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.

I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.

He’s going to put in the referral.

Damn it.

When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.

Fucking hell.

Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.

So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.

That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.

I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.

“Maybe you’ll get a disease named after you,” Dan joked.

I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.

Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.

Let’s Have Toilet Church

Let’s Have Toilet Church

What I’m about to write will not be for everyone, but me and the people who get it are going to have toilet church this morning. The rest of you are welcome to attend. We dare you to try and understand.

I decided on Monday that it was time to go back on rosuvastatin (generic Crestor). My primary doctor prescribed it last year for my high cholesterol after atorvastatin (generic Lipitor) caused me to hurt like the dickens*.

I’d been eating like a 20 year old, because food was one of those things I couldn’t be too thoughtful about. I frequently used up my brainpower on things like surviving 30-minute rides to harrowing medical procedures and then recovering from the three-day crash that ensued.

Consequently we DoorDashed** a lot. I ordered what I wanted, not what was best for me. Because it was the best I could do at the time.

Not exactly advisable for a forty-something.

Even a healthy one.

So it wasn’t a surprise when I got prescribed cholesterol meds. When the first one caused untenable side effects, my primary physician had me try rosuvastatin.

I’m trying not to make this tale incredibly long for all our sakes, but I went off of it while trying to figure out why my lymph nodes were huge. This week I decided it was time to go back on it because it clearly wasn’t the medicine causing my problems.

However, one of the side effects of rosuvastatin is constipation. (I think we all know where this is going, don’t we?) And in the time I’d been off it, I’d forgotten my doc told me to cut the pills in half because of my drug hypersensitivity. So I took twice my recommended dose, because: my memory. I also recently upped my fiber intake because: diverticulosis.

I repent.

Hi, I have IBS, if you’re new here. I am either constipated or… the extreme opposite of constipated. As I have told anyone who’ll listen to my gastrointestinal woes, I’d rather have diarrhea than be constipated. Though neither extreme is fun, diarrhea is acute. It’s misery for a limited time, followed by almost euphoric relief. When it’s over, clouds part and angels sing.

Constipation, by contrast, is protracted suffering. I hate it. It’s why I never finish post-operative pain meds, sometimes eat Taco Bell medicinally, and frequently shout “Demons, out!” while seated on the toilet.

Well, I think docusate sodium is better for the soul than a communion wafer. And my fiber-undigesting self believes constipation is a little-discussed circle of hell. My Senekot Sin was that I didn’t account for the rosuvastatin, let alone too much rosuvastatin.

God have mercy on my painfully bloated, immotile colon. Forgive it for all the radiating nerve pain it causes, because I sure as shit*** can’t.

* I looked this expression up. Apparently it originated in the 1500s with “dickens” being a substitute for “devil” though present-day me wonders why you couldn’t just say devil. Was it a Voldemort-like situation?

** Use this link for $10 off your first three orders of $15 or more, and I get $20 in credits.

*** Ha! In my dreams.

Oh My God Do I Try

Oh My God Do I Try

We’ve got a grocery delivery coming this morning, and I’m getting Cheerios with veggies blended in. It takes very little to entertain me these days, and trying new food is easy. I mean, eating is something I need to do anyway, right?

I recently announced to social media that I plan to become a candy influencer if I get some energy back. You know, let candy companies send me new stuff for free in exchange for a review. (It would pair well with my other hobbies. Heh.) But maybe I should expand to any food though. Even stuff that doesn’t contain added sugar.

I’ll probably blog about the Cheerios after I have a chance to try them. The store had Blueberry Banana and Strawberry Apple varieties available. So I got one of each.

I finished paying the last of my current medical bills this morning, and I am trying not to think too much about how that round of $1,500 and a couple of invasive procedures got me nowhere.

Wait. That’s not entirely true. It did help me rule stuff out. I need to remind myself of that to keep from getting cranky. But I don’t have any answers yet, and that’s frustrating. Typical, but frustrating.

I have noticed that taking Flonase for my seasonal allergies has reduced some of my inflammation. I guess because it’s a steroid? It’s inconsistent—probably not a big enough dose—but any port in a storm right?

My lymph nodes remain huge, but I’m not going to know much about why until at least next month. And then only if the rheumatologist finds something definitively wrong. So in the meantime I’m trying to not be a horrible grouch. It’s not my place to say whether or how successful I am, but I try. 

Oh my god do I try!

Peak Void-Screaming

Peak Void-Screaming

Oof. Yesterday was something else. It was rainy and cold. My inflammation was up, so my pain was at peak void-screaming levels, and I had an appointment with my oncologist.

He still doesn’t know what to do with my lymph nodes, but while I wait to be seen by an infectious disease specialist, he ordered a bunch of labs. Some of the test results were out of range, but not wildly so. Nothing prompted me to go, “a-ha! So that’s what’s wrong!”

And nothing made a diagnosis obvious to him either, or I imagine a nurse would have called me before results got released to my patient portal.

Dr. Onc (I think that’s what I’ll call him here) asked about my pain. It was exceptionally debilitating yesterday. I explained my theory that when my inflammation increases, I think my degenerative disc stuff pushes on a nerve and sends me into Active Wincing Mode™. I reported a 7 on the pain scale going into that appointment. By the time I was home it was at an 8.75. 

That degenerative disc theory lines up with elevated sedimentation rates reported in my labs and a family history of arthritis, but this fatigue and these lymph nodes. I just don’t know. If it’s possible to discern what symptoms are brain tumor and what are something else, I’m going to need someone to hand me the decoder ring.

I do appreciate my doctor though, and I’ve been trying to focus on that. Yesterday, for example, he acknowledged my pain but said he didn’t think the lymph node stuff was life threatening. Words I didn’t even know I needed to hear. I think my blood pressure went down measurably, though. So when my anxiety peaks, I will try to remember what Dr. Onc said.

Also, the man ordered enough labs that the phlebotomist took seven (!) vials. That’s a decent number, even for a professional patient. A number that gives me confidence he’s trying to help, and one that reaffirms my expectations of modern diagnostic medicine are reasonable. (Being gaslit by doctors will screw you up, kids.)

Oh! Also yesterday I got to wear my IV hoodie for the first time. The phlebotomist complimented me on it, but the nurse taking my BP basically gushed. “Every patient needs one of those! It’s so cool!”

Thanks to my friend Jenn for hooking me up with it for my birthday, because it brightened a pretty miserable day for me. I was cozy, but my elbow crook was still totally accessible. 

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Next Stop: Infectious Disease

Next Stop: Infectious Disease

Talked to a nurse at the cancer center yesterday, and she told me to expect a call to schedule an appointment with an infectious disease specialist, because my oncologist was referring me to one. This is the next stop on the diagnostic itinerary following the colossally unhelpful excisional biopsy.

It’s strange to say this, but I feel relieved. I genuinely thought after the surgeon’s follow-up that I’d be on my own trying to figure out what to do next.

I wasn’t thinking I couldn’t get medical help, but that I’d have to figure out who and how to ask and that I wouldn’t be up to the challenge. I am not used to medical competence, even though it’s been years since the tumor diagnosis trauma.

So, no appointment yet. But soon-ish.

I did feel well enough yesterday to move my next primary care appointment to April. It was scheduled for Tuesday, but I just can’t juggle all the things. I still have to work out Dan’s health insurance situation, and also Monday is my birthday. I didn’t want to spend it worrying about the next day’s doctor appointment. Because I absolutely would.

Besides, spreading the appointments out gives me longer between bills. Right now I owe about $500. But I am anticipating bills from the anesthesiologist, the surgeon, and the hospital for the biopsy. So far only the lab has billed me, and it was only $125.06. (I say “only” because it’s exponentially more expensive to have a lab look at brain tumor cells—ask me how I know.)

If you’d like to help me out, there are non-money ways to do so listed here. Or you can use the links below.

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Correction: It’s $125.06 for the pre-biopsy consult, $57.87 for the labs, and $350.00 left on the outstanding cancer center/oncology stuff. Sometimes it feels like Medicare doesn’t cover enough. (Because it doesn’t.)

Happy Valentine’s Day, I Guess

Happy Valentine’s Day, I Guess

Happy Valentine’s Day to all who buy into this commercial holiday that might have origins in animal cruelty and domestic violence.

I was reluctant to share this Zentangle video of mine after being punished by the government for making enough money for us to stay alive, but screw it. If I make or lose an extra $5 this month, it’s not like it will change anything. 

Anyway, watch this if you or your kid are making a card this year and want ideas:

I, personally, like to enjoy this holiday by eating non-holiday-specific, non-heart-shaped chocolate and buying a Valentine’s Day card for Dan from a self-employed artist. You know, sticking it to big VD. But this year, I got him a breakfast burrito. Because SSDI paid out at midnight, and that’s the best I could do on short notice.

Not that he wasn’t delighted with his SuperSonic Breakfast Burrito. There are jalapenos.

The weather is warmer today, which explains why I hurt so freaking much and couldn’t sleep last night. Any weather change is bad for pain and inflammation while it’s happening. I’ve been told, however, this sunny stuff might hang around (meaning I might actually have enough time to acclimate) until the weekend. Around these parts, that’s practically an eon.

I’m also delighted to be able to tell you that my colon has entirely reversed course since the last time I discussed such unpleasantries. Ain’t IBS grand?

I’m a week away from my oncology appointment, where I am still anticipating a giant shoulder shrug from my doctor regarding the lymph node stuff. Just managing my expectations. Someone else can cross their fingers that there’s an answer until then. I’m just not in the mood.

That’s about it. Enjoy your Wednesday.

It’s Been One Week

It’s Been One Week

It’s been one week since you looked at me
Cocked your head to the side and said, “I’m angry”

—my excised lymph node, probably

One week ago today was the biopsy. I don’t have any answers yet.

It’s no secret that patience is not a strength of mine, but in this particular case, I’m cutting myself some slack for my deficiency. No one in this situation would be cool with the waiting part. No. One.

But wait I must.

So what else is floating around in my head besides excessive lymph? I’m so glad you asked. I need to start on our taxes, but I don’t feel like it, so…next!

I still owe the Cancer Center of Illinois roughly $500, and the waterfall of bills for the biopsy will probably arrive next month. Good times.

It’s supposed to reach 70°F today, according to my weather app. But even that’s a mixed bag. On the one hand: ahhhhh. On the other: climate anxiety. And then snow on Monday, but I’m going to try not to think about that.

The other day I listened to an episode of It’s Okay That You’re Not Okay. (A podcast mentioned by a friend on social media.) The episode was about chronic illness, and it resonated with me in ways that soothed the part of me that needs to heal from the medical gaslighting years ago.

To be clear, I don’t have problems with current doctors. It’s just that the damage the old ones did was life-altering in a very lingering way. What I needed to hear was, “I don’t know how to fix this, but I believe you” and what I got instead was “It can’t be that I don’t know everything, so you must be lying.”

Not to mention all the Lincoln Financial Group drama.

Anyway, feeling seen, as the kids say, made my muscle tension ease some. That in turn lessened some of my pain and confirmed my motive for writing about what literally hurts me: I blog this stuff for me and so someone else might find comfort too.

Oh yeah, the regular walker arrived, and I am not good at it. I think being pain-free from the anesthesia at the hospital is what made it easier. I’m always coming back to the damn pain. Wanting to be rid of it (the part I can get rid of) makes it harder to let go of it. Life is so unfair.

That’s not me whining; that’s me stating a goddamned fact.

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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.

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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?

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* 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.

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