Monthly Archives: January 2018

It’s Not Cancer!!!

Posted in Just Life., Music by

The tumors in my liver are benign, likely caused by ~20 years of hormonal birth control. My bone marrow looks good. Chromosomes look good. Doc thinks that the high LDH was caused by nonalcoholic steatohepatitis (NASH) — a specific type of fatty liver disease, which we already knew I was dealing with.

So, amazingly enough, there’s nothing new to deal with here — just another situation where I’m being told to lose weight and increase activity. I’m on board. I’m eating less, thanks to gastritis, and I’m almost done meal planning for a month’s worth of AIP. Part of me is looking forward to it.  It’s gonna be my form of Lent.

One great side effect of genuinely believing that I was about to have to fight cancer is that I have a fucking long to-do list, filled with awesome things.  Stuff like, “Record all your original songs, even the ones that you think are mediocre.” and “Remember how to have fun by going on lots of adventures and writing about it.”

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I will try harder. This health bullshit is boring AF.

I think I’m going to need to hire someone to transcribe music for me. For too many years, I’ve let my distaste for transcription (read: knowledge that my skills are so weak that it’s painful, slow, and often inaccurate) stand in the way of my songwriting.  It’s actually the reason that I dropped out of Songwriting I at Berklee.  I rocked all available lyric writing classes and absolutely loved them, but when it came to actually writing out my own music, to be judged by a guy who has taught iconic songwriters, I cowered. There’s no other word for it.  I felt like I just couldn’t do it… so I couldn’t. And I haven’t. Add the facts that the class was at 9 a.m. and I’d just chosen music business as my major, and dropping the class seemed like a no-brainer at the time.  If ever I wished I had pushed myself harder while in college, it’s then.  Opportunities like Berklee songwriting classes don’t come around every day.

One thing that 2 weeks of wondering about my mortality was good for was recognizing areas where I’ve let myself down, and I’m kind of sick at my stomach over my level of cowardice. I’m gonna work a lot harder on feeling bad about myself for actually making mistakes instead of feeling bad about myself for not doing things that I’m afraid I’m going to fuck up. You can’t fail if you don’t try… but if you don’t try, you’re kinda failing at life.

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Uncorked.

Posted in Just Life. by

So, this entry is a little overdue, and I’m not even going to pretend that I’m going to be able to be terribly organized in my thinking… but I’ll try.

I’ve been living through a medical shitstorm. Here are the highlights.

  • Tummy Troubles: I had an endoscopy last Friday (1/12). I have gastritis. Unknown cause. Stopped omeprazole & ranitidine. Started taking Dexilant. So far, so good. I don’t know the cause, but I’ve had more energy since I started taking it.
  • CT Scan results: very small hiatal hernia, small umbilical hernia, hypodensities in the spleen & liver
  • Hematology: Lab results were abnormal. They found immature cells in my blood. My immunoglobulins are low across the board and wonky especially in my igAs. LDH was really high. Doc said I needed a bone marrow biopsy, so I did that yesterday (1/17). Results will be given 1/31.

Of all of the diagnostic testing and surgeries I’ve endured in my life, the bone marrow biopsy was, without question, the most painful to endure (though for a short period of time), and the quickest to recover from (less than 24 hours before I was feeling fine.)

I actually said, while still in the room, that I’d rather get another c-section than go through that again. (I’m talking about the surgery being done with spinal anesthesia.  As long as I can’t feel it, I have absolutely no fucks to give. Recovery? That’s another story. Also, I want another baby, so sign me up for another c-section. Seriously.)

I still think it’s hilarious that my mom thinks that it looked like they were trying to uncork a bottle of wine when they were doing the aspiration. I kinda want to do that right now.

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I’m a lightweight, but that doesn’t look like enough.

See, I’m a realist. I know that if they’re seeing shit on CT and my immunoglobulins have been decreasing for a year and my LDH is up and I need to use marijuana to be able to eat that I probably have cancer. Blood cancer? Liver cancer? Is there such a thing as Spleen cancer? Who the fuck knows. It just is a question of whether it’s the kind that you can survive.  I’m ready for a name so that I can kick it’s ass.

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I name you, Carrier Knight!

Anyway, it turns out my deepest, darkest fear right now is that my son will grow up and have no memory of me, so I plan on recording videos. Like, a lot of really awful, candid videos. I might post em here. I might not. I honestly don’t know.  I’m not sure who would want to see them who isn’t related to me anyway. Hell, I don’t even know if Future Henry will want to watch em. Or if he’ll even need them. God, I hope he doesn’t. Truly, I can’t really get settled on whether or not I’m worried.  It all seems surreal.

Like, I’m not scared about adding another disease to the roster. I’m resigned to treatment already. I’m honestly thinking things like, “Hey! If I have to nuke my whole immune system to survive, I might be able to kill cancer and MS at the same time. TWOFER, BITCHES!!!”

And on the other side of things, my parents want to be at the 1/31 appointment, and that part that’s in complete denial about how much this could all suck is like, “WTF, guys. Nothing to see here. This is all boring crap. Stay home. I’ll text when its over.”

So, IDK, guys. This is what my life is like right now.

I’m grateful that my mom is in town, and that Henry is getting special time with her.  I’m grateful that my biopsy site is healing up well. I’m grateful that Adam’s root canal surgery was painless today, and am hopeful for a similar experience for him day after tomorrow.

If I find out that I’m terminal, I wonder what about life I would do differently.  If I can answer that question, I’ll be making the changes anyway.

 

Challenges.

Posted in Paleo Diet, Seizure Disorder by

Earlier this week, a new friend challenged me, since I hadn’t yet really gotten into the Wahls Protocol, to go ahead and try AIP first for 90 days.

I said that I could do anything for 90 days in the interest of not having seizures… but to be honest, I’m not sure that I can. I mean, I can’t even get myself to eat 9 cups of veggies a day… and that’s on days when I can make good food decisions for myself.

Physical

Yesterday and today have been difficult for me, health-wise.  Bunches of seizures. (Like, so many I lost count.) Many ended in post-ictal confusion “time travel.”  Lots  of gastric pain. I even fasted for 24 hours because of the pain… It even hurt to drink water.

But you know what made the pain stop enough for me to be able to eat and return to being a mostly-productive member of this family today?  Cannabis. To be more thorough, it was a high CBD edible. Specifically, 2.5 mg of CBD and 1.25 of THC — or an 8th of a piece of 1 Strawberry Peach sour gummy.

Or, if you’re ignoring the medicine in it, and are only thinking about diet… an 8th of a piece of gummy candy that definitely contains sugar and probably contains artificial flavors and coloring.  *sigh* Heck, there’s even a sign at the dispensary making sure everyone’s aware that edibles are not being created in a sterile environment and that anyone with allergies is advised to forgo them.

So, I find myself wondering if that small amount of verboten food, (truly, about a cubic centimeter of candy that may have come into contact with gluten, dairy, etc.) taken almost daily, would make the rest of the diet, well, pointless.

If it were for weight loss alone, I would know that such a small indulgence wouldn’t matter in the long-term — but when the dietary objective is to decrease inflammation and improve symptoms, I’m not so sure.  Then there’s always the questions — “Is the CBD more anti-inflammatory than the sugar is inflammatory? And “How long do the effects last?  Is sugar inflammatory for a half hour and CBD anti-inflammatory for 4 hours?”  It’s really hard to science that shit when you have degrees in music and law and know diddly squat about chemistry.

And then there’s the whole “family planning” thing. Obviously, I’m not going to start trying to conceive while I’m still waiting for results from the hematologist and CT scan, but if I’m all clear in those areas, it’s time to make another Majka… and the last time I gave up paleo and cannabis was when I was in my first trimester with Henry, and the doctor stressed the importance of eating a “balanced” diet, including grains and dairy, and he dropped a whole bunch of pamphlets on me.

I honestly don’t know what the fuck to do.  It’s not the optimal time to make any decision at all, when I’m hurting, anyway… certainly not the time to thoughtfully consider something that will change the way I deal with life a minimum of 3 times per day.

Mental/Emotional

For anyone who is curious about the psychological gems that I mined for in the dungeon of yesterday’s seizures, I got to spend a surprisingly long amount of time yesterday (almost 15 minutes!) as my 2008 self.

She was absolutely furious with my lack of career, lack of discipline, and 50 lb weight gain. She cannot believe that I’m not only living in IL of all places (There’s fucking snow here! UGH.), but that I refuse to take the IL bar. (She accused me of being lazy! It’s only a 2 day test!)

2008 Rae believed I gave up on life, and that I am now pathetic and worthless and deserving of contempt. But, hey, at least my kid’s cute, and Adam’s still hot.

She was waaayyyyy more of an uncompromising cunt to me than I realized while I was going through the process of being her. She was proud of herself for standing up immediately and continuing to study for the bar exam after she had drop seizures. She thought it was proof that she was tough and “has what it takes.”

But then again, that was before almost a decade of therapy. Before self-compassion was even a term that I’d heard. Before EMDR. Before marrying Adam. Before becoming a mother. Before redefining what “success” means to me.

My favorite incorrect insult from her was when she accused me of being a boring, suburban housewife with nothing to add to society.  If I ever needed something else to rage against, it’s that.

God forbid I be boring.

*jazz hands*