Vitamin D Insufficiency

Vitamin D Insufficiency

To absolutely no one’s surprise, I’m running on insufficient amounts of vitamin D again. I happened to ask my oncologist if he could order the blood test last time I was in. It was on my list of things to do for my primary doctor, but I’ve been kind of busy being sick.

I guess you know it’s bad because I don’t feel well enough to go to doctor appointments.

Anyway, I have reinstalled the DMinder app on my phone to help me manage my supplements and sunshine. I was doing so well a few years ago. In the summer of 2021, I was up in the 70s, but I have fallen below 30 again. It sucks because I am photosensitive. (I thought this was because of medications, but now maybe something autoimmune is complicating things too.)

My articulating arm that holds my phone while I type broke this week. I got a new one, but it’s too hard to move or I’m too weak or both, so I might update less frequently. I’ve been contorting to make this one work for me, but I think it’s part of the reason my neck and shoulders hurt so much. I’ll get the non-matchy kind again, but it’ll have to wait until next month’s SSDI.

All of that to explain why this blog might be quieter than usual.

While I’m here, might as well post some birds!

The meadowlark might not be for real. I didn’t see it, and those damn starlings and their mimicry. Dan is not really into the photography thing right now, and he’s the only one in this house that can walk without a rollator, so he’s got his hands (and feet) full right now.

To end on a happier note, that Eastern Wood Pewee is one of the cutest things I have ever seen.

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Too Tired for Hope

Too Tired for Hope

I didn’t sleep well last night. Yes, again. I was overthinking the whole lupus-rheumatology thing, even though I promised myself I wouldn’t. So it’s back to moving the compulsive thoughts to the frontal cortex. I’m not feeling anxious, really. Just uselessly spinning the cogs, because I can’t do anything else.

On one hand, I’m tired of wondering what’s wrong, bitter about needing to. And on the other hand, I can barely use a fork because it’s too heavy, and wouldn’t it be nice to know why? Maybe even treat it?

I vacillate between letting myself hope for something better and believing the only thing I can trust is that medical pursuits are colossal wastes of time for me. All this time I should be living while the tumor isn’t growing, and instead I’m stuck in bed. Saving all my energy for getting to the toilet in time.

It’s depressing. And not just a little bit.

I made a document on my phone of all the symptoms I can think of, trying not to be dismissive of anything. If it’s caused by the brain tumor or a long-term side effect of chemo, I need to let the doctors say so. Maybe I’m ignoring something telling, writing it off as insignificant because I don’t know what’s what anymore.

The positive ANA test does point to something. Lupus or Sjogren’s Syndrome or Myasthenia Gravis. But I considered all these things before, years ago. And what showed up was a brain tumor.

When I first met my primary doctor here, she asked me if there was “anything else” after we went over my diagnoses. “Not that that isn’t quite enough,” she added. We laughed, because what else are you going to do?

I’m too tired for hope today. Someone else can do it instead.

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4 New Appointments

4 New Appointments

I started the day with one appointment and ended the day with four new appointments between now and early July.

My oncologist asked if there was any particular reason I didn’t do my infectious disease and rheumatology appointments. I explained that I was too tired, there were too many things going on, and I needed a break.

He understood but encouraged me to see the rheumatologist because of my positive speckled ANA results, and then he mentioned some soft tissue shenanigans and wondered about lupus.

Man, I am not Googling that shit again.

I asked the doctor if there was any rheumatologist he could refer me to in Illinois. I knew the answer. Dan’s been trying to get one for his psoriatic arthritis for a hot minute without luck. But I had to verify.

(For those who haven’t heard: if you’re pregnant in Missouri you can’t get a divorce even if your spouse is abusive. And that’s not even the half of it. Missouri is bass ackwards, and I hate the idea of my money funding that fuckery.)

“Should I send the referral? Are you OK with seeing one in Missouri?”

He held a finger over the mouse, waiting for my answer before he clicked.

“I guess,” I said. “I don’t really want to, but I guess I need to.”

So it’s, MRI, CT, rheumatology and oncology in the next 7 weeks. I’m not sure how that sounds to the able-bodied. But to me it sounds like pure hell. Heat, car rides, labs, tests, insurance, doctors. Ugh.

Sodium Lauryl Sulfate in my Toothpaste

Sodium Lauryl Sulfate in my Toothpaste

I’ll get to the sodium lauryl sulfate in my toothpaste in a sec. But first! Yesterday was definitely a day. Mom landed in the ER. (She is okay, but in pain). I got another rejection letter from a literary agent. And I broke my website.

Mom was trying to load some old patio chairs into her Jeep to take to the ReStore in Collinsville, but they didn’t load easily. She fell, putting a pretty substantial gash in her ring finger and giving her a torn meniscus.

The ER was hopping yesterday too, so she was at the hospital for like 6.5 hours, during which time I pretty much felt like a useless eater*. They patched her up but left her with her OTC acetaminophen and ibuprofen for pain. (That’s a rant for another day.) She’s fine, but I wish she was better.

If there’s good news here, I guess it’s that I have no shortage of mobility devices to lend her and my ADA walk-in shower will be pretty useful too.

While that was going on, I got a very kind rejection letter for Who You Gonna Believe. I don’t know if the agent’s assistant said the sample was charming (or that it had its charms—can’t remember the exact wording now) because I have a brain tumor or because it really did have a little something.

But once again I find myself awash in apathy about traditionally publishing WYGB and maybe that’s a sign? The more I think about it, the more I think I should definitely be excited about the idea of finding an agent, and I’m just not.

The rejection letter drove this home for me when I read a line that said—and I’m paraphrasing—we’re just not that into it and we’re going to pass because you deserve an agent that’s obsessed.

Hit me me like a ton of bricks, it did. I should be more excited. Otherwise what’s the point, right?

Which brings me to my website blunder. I read somewhere that my permalink structure wasn’t the greatest for search rankings. There are dates taking up space before the words in the URLs, and that’s not ideal. Not awful, but not ideal. So despite a warning in my settings that said “you should almost never do this” I changed my permalink structure for a few minutes and wrecked everything.

It’s better now that I have changed the setting back, but I’m still finding random messed up links, even after clearing my browser and site cache. I’m sure that will set me back a little bit in my quest to monetize the site. Oh well. That’s what I get for letting all those “you got this” remarks during treatment go to my head.

I might as well update you on the toothpaste saga since I’m here. Someone commented on my last post that the culprit could be the sodium lauryl sulfate in the toothpaste. Well, that’s easy enough to check. Mom uses a toothpaste without it, so I can do a science myself without buying anything new.

My mouth and tongue inflammation are down, but my lymph node hasn’t changed much. Overall, I’m breathing easier, feeling less fatigued, and sleeping better. I’ll keep going and see what happens.

Turns out SLS is in everything though. So if I need to pursue this further, it’ll mean changing more than my toothpaste. Cancer and its treatment break everything. I’m so not amused.

* Feeling like one sometimes is normal. Believing myself to be one is incorrect.

Am I Allergic to Toothpaste?

Am I Allergic to Toothpaste?

I think my natural toothpaste caused my lymph node swelling? Question mark? Am I allergic to toothpaste now?

I can’t confirm anything yet, because my lymph nodes are still slightly enlarged, but they’re much smaller and way less angry. And the only thing I can figure out is that I switched toothpaste.

See a couple of years ago, during chemo, brushing my teeth made me gag. (If you know, you know.) At the time, the Peroxicare stuff Dan and I both used was super foamy, which made me want to puke more. It also aggravated my dry, burning mouth, so I switched to a natural, non-fluoride brand.

Tom’s toothpaste helped with the gagging and the burning, so I bought it again whenever I ran out. Then recently Dan couldn’t get the toothpaste he prefers, so he got something else. He didn’t like the Complete Care he bought. So I thought I’d take the nearly-full tube off his hands when he discovered the Arm & Hammer Peroxicare was back in stock at Walmart.

The Complete Care stuff touts being reformulated, and since my gag reflex is better now… I figured it was okay to try.

I did just fine. No gagging, no burning. But the amazing part was that after one brushing, my most offensive lymph node—the left mandibular one—shrunk a good 30%. It’s probably down about 60% now after a couple weeks on the Complete Care, and I’m almost certain it’s the toothpaste. (There’s always room for a little doubt.)

I haven’t talked about it a whole lot because I fear jinxing my progress, but I’m growing more confident Tom and I aren’t meant to be. If his toothpaste is the problem, I wonder whether I’m allergic to an ingredient or if I need the anti-microbial properties of fluoride in my very sensitive, illness-prone body. Maybe it’s a little of Column A and a little of Column B?

I won’t give it much consideration as long as I’m feeling better. But if it is an allergy, I’d like to know what specific ingredient is setting me off so I can avoid it elsewhere. Know what I mean? I don’t think Tom’s is made with spinach or arugula, but maybe I should check.

It’s good to feel a little better. But also? Fuck potentially years of unidentifiable and very expensive suffering because of toothpaste. Jesus, my life.

Another Bill, Another Day That Ends in “Y”

This not what I want to be doing with my time. It’s not that I feel undeserving of financial help when it comes to medical bills, it’s that I hate asking for money when I could be building this website or putting on clean underwear.

Plugging my GoFundMe uses up energy I would rather use elsewhere. But here I am, in the soulless United States of America begging for help covering medical bills for biopsies that didn’t help diagnose a damn thing anyway.

Trying to keep these charges from going to collections.

It’s no wonder I’m broken.

If you would like to help, I need like 5 people to share this campaign. Not even donate, just post, remind people that small donations and shares matter to patients like me, and vouch for me and my cancer.

I need this to be seen by some fresh eyes. I feel like I’m bleeding my friends dry with this crap.

Canadian Geese Are Sky Honkers

Canadian Geese Are Sky Honkers

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Boomer used to bark when Canadian geese—sky honkers—flew over the house. Like an old man shaking his fist at the clouds. He’d bark at all loud birds, actually. I remember there was a really loud cardinal sitting on a phone line in the yard in Urbana once, yelling his tiny bird heart out. Boomer yelled right back at him. My bestest good boy didn’t take any lip from mourning doves either.

Anyway, Canadian geese have a reputation for being aggressive birds. The first time I witnessed this aggression, I was walking along the canal in downtown Indianapolis with my ex-husband. I was surprised when one spread its wings and hissed. (If you’ve read Chapter 2: You’re Wearing That? you’ve probably guessed my ex deserved it. You’d be correct.)

I don’t know what things are like where you live, but here in the Midwest, Canadian geese are ubiquitous and generally unloved by homeowners and groundskeepers. They’re loud and they poop on sidewalks, and because they seem to linger year round, they’re thought of as pests.

So why can’t I capture one of these infernal beings on a Merlin app sound recording? They’re everywhere. This should be easy. We’ve had mallards in the yard for crying out loud. Yesterday I was on the toilet peeing when a few geese honked their way past an open window.

Damn it, I thought. How do they know I don’t have my phone?

Perched upon my porcelain throne, I shook a fist at an imaginary cloud, paying homage to Boomer. The sky honkers honked some more. Pretty sure they were mocking me, actually.

Oh well. I figure the hummingbirds are coming soon, and they’re cuter anyway.

In the meantime, here are some of the nicer birds that visited my yard this week. (The warblers are migrating! Yay!) I even IDed a rare find Wednesday. But there are still no Canadian geese on my life list.

Jerks.

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A Disappointing Lack of Candy Coffee

A Disappointing Lack of Candy Coffee

I didn’t order a candy coffee with my breakfast this morning. (“Candy coffee” is what my dad called coffee with anything in it that actually made it taste good. He wanted his plain.) I contemplated it, but I slept so well last night, I couldn’t sabotage myself with caffeine today.

Now, if insomnia visits me tonight anyway, I will truly be pissed.

It’s funny because when I was younger, I’d drink caffeine all day long and still sleep so well. But I inadvertently got off the sauce during treatment when everything tasted awful, and now I’m hypersensitive to the stuff.

As the kids say, fuck cancer.

I’ve been tweaking the website and trying to find more affiliate partners the past couple of days, but it’s a pretty slow process. None of these sites are optimized for mobile devices, and it’s a real headache trying to use them on my phone.

Aside: If you’re reading this, ShareASale and Commission Junction, make a mobile app. Pronto. Us disableds deserve easier navigation.

Anyhoo, I realized it has already been two weeks since I sent those e-mail queries for Who You Gonna Believe. I sent about 7 emails total, and so far I’ve just heard back from the one. I have no expectations, though, I’m just reporting in for anyone who’s curious where that stands.

With my new health insurance allowance for OTC stuff, I have ordered compression socks. I got the seamstress tape out and measured my calves and everything. I don’t know if it will help my muscle fatigue or not, but I’m always a little hopeful about these things. I have to be.

Speaking of health insurance, Dan’s old coverage is still in effect. So the appointment we were worried about was covered. At least until the insurance company recognizes their mistake. But I’m not telling those jerks anything. They can figure it out themselves. I figure they owe him a lot more for their previous coverage denials than that one appointment could possibly cost.

Related: the stress of the coverage conundrum had his blood pressure all over the place to the befuddlement of his primary care physician. (The one he likes that he can’t see anymore because he has new insurance.) “This is what anger and uncertainty does. I’ve been stressing about this for a week.”

Put that shit on a bumper sticker.

Say it louder for the people in the back.

One hundred percent.

Meryl Streep standing ovation dot GIF.

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

Living with cancer is hard, but anxiety around routine scans compounds feelings of fear and worry. Scanxiety is the angst you feel when it’s time for another medical scan. I know it well. Too well. Here’s how I cope.

Meditation

If you’re new to meditation, I recommend a guided practice like this podcast episode from Tara Brach. Meditation brings you into the present. While your brain is focused on the here and now, it can’t be distracted by life’s “what ifs” and spend too much time imagining what could go wrong.

Exercise 

Take your dog for a walk, play a sport, or film a TikTok dance video. It matters less how you move and more that you move. Movement boosts endorphins and distracts you from your fixation on those MRI or PET scan results.

Medication

While being anxious over the results of a scan is a normal human emotion, It’s not one most of us enjoy. In fact, it can complicate an existing physical illness. And sometimes medication is the best way to deal with it. There’s no shame in getting help where you can find it.

Sleep Aids

Taking supplements like melatonin to help you sleep can prevent insomnia from making your scanxiety worse. Talk to your doctor to see whether starting a sleep regimen that includes melatonin might be helpful for you.

Medical Marijuana

While getting high can certainly be a fun way to take your mind off your worries, you can also microdose medical marijuana to keep calm. Take it before your exam and while you wait for your scan results. Make edibles with cannabutter or try vape for more immediate relief.

Prescriptions

Anti-anxiety medications like alprazolam can be very effective, and in the U.S. often come with the added benefit of being covered by insurance. Talk to your primary care physician or oncologist about your possibilities.

Hobbies

Reducing anxiety is about giving your brain something else to focus on. Something you enjoy. Here are a few ideas if you’re looking for something calming to do:

Zentangle

Zentangle is a form of meditative drawing that can reduce your symptoms. It is increasingly popular among cancer patients. Learn more about it here.

Baking

Many people report that baking for themselves or others is a form of therapy. If you have the energy for it, give it a try. Put scanxiety on the back burner.

Birding

Birding can get you in nature which reduces stress by lowering blood pressure and stress hormones. But it can help even if you can’t get outside. Try a bird feeder with a camera or downloading the Merlin app and identifying bird songs through an open window.

Gardening

If you enjoy getting your hands dirty, gardening is a great way to reduce anxiety. It’s rewarding to see plants grow and flowers bloom and know that you had a part in making something beautiful happen. It’s also satisfying to grow your own vegetables and cook. Planning your garden in the off season can also relieve stress.

Gaming

If you prefer to—or need to—stay indoors, video games provide a distraction from worry too. We have a tendency to view things negatively when they are actually quite helpful, and video gaming is one of those things thatbis too easily criticized. Whether you like Fallout 4 or Animal Crossing, play what brings you joy.

Small Comforts

Sip tea while reading a cozy mystery under a weighted blanket. Maybe play soothing rain sounds on your noise machine. Watch your favorite TV show. Whatever comforts you after a long day at the office can also comfort you during a bout of scanxiety. Take care of yourself by recognizing your need for downtime.

Personal Connections

isolation can make anxiety worse, so maintaining social connections is important. Whether you need to talk about your fears or you need a distraction from them, other people can provide the sense of community you need.

Support Groups

Support groups are an opportunity to be with people who get it. In addition to feeling less lonely, isolated or judged, it can be helpful to talk to someone not immediately affected by your illness, because sometimes feeling like a burden is a burden.

Family and Friends

The people who know you best can sometimes make you feel your best. Keep a standing date for game night or movie night or pizza night or whatever it is that you and your people enjoy. During that time scanxiety probably won’t find a seat at the table.

Social Media

If you can’t physically get to a support group meeting, social media can be a lifesaver. From Facebook groups to cancer-related hashtags, empathy and advice are available 24/7 because someone is always listening.

Mundane Chores

Doing the dishes or folding the laundry can give you a sense of accomplishment. The distracrion and hit of dopamine might be just what you need to get out of your own head until your anxiety wanes.

For many, it’s waiting for the results to come in that’s the most difficult. If you’re in that boat, you’re not alone. Don’t be afraid to ask for the help you need.

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Brain Freeze

Brain Freeze

My anxiety is up, so I didn’t blog yesterday. It’s disabling like that. Just completely freezes my brain.

What’s got me sleepless and experiencing brain freeze currently? For starters Dan has a doctor’s appointment today, and I’ve been rolling around various topics related to paying the inevitable bill, finding him a new PCP, and getting his meds.

I have a couple of my own appointments on the horizon. The first is sorting out whether I’m going to the infectious disease doctor or not. 

I cancelled the rheumatologist already. I’m just so tired of these meaningless exertions, and I was having trouble getting someone to take me to Missouri. I mean, I don’t want to be there anyway. The fact that no one else does either just makes it easier to say no.

Then my routine oncology appointment will include scheduling an MRI. How is it time for that crap already?

I’m also concerned about making money from this website. I was replacing some Amazon links with Blick.com links (I need Amazon sometimes, but I don’t want to need it) when my mind was like, “wouldn’t it suck if you got this site making just enough to get you kicked off benefits and not enough to live off of?”

Everything about being disabled is stressful. Everything.

And those anxious thoughts preoccupy my brain so that there’s no juice left for executive function. I can’t shower and fold my clothes, let alone make the words make sense. So yesterday was useless to me.

But blogging today must mean I’m recovering, right?

I’ll do my best to hold on to that. Maybe writing down my anxieties will get me through them. Still operating on the theory that writing it down gets it into my frontal cortex, and from my frontal cortex I can get rid of it.

In cuter news there’s a turtle in the yard this morning. Ain’t he adorable?

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