The past couple of weeks have been eventful, just not so much in my online life. Mom came to our house here in Urbana to help us with landscaping. (And when I say helped, I pretty much mean she did everything because she is the best mom on the planet.)
There are plans in the works to get the shutters and trim on the house painted, but first: estimates. It really makes me happy to look at the prettied-up yard this year. Because last year during the pandemic, we didn’t have the money or motivation to do much of anything with the yard.
After Mom spent a few days here helping us out, I went back to stay with her for a bit. One of my brothers and I worked on getting more things sorted at her house. My Dad had a pretty ginormous model railroad thing going in the basement, so Ryan worked on that while mom sorted documents and I shredded the stuff that couldn’t be recycled.
It was hard work in that it tugged a lot of nostalgic strings, but it was good to get Mom several steps closer to a more manageable household. One evening she and I assembled a lateral file cabinet together. The instructions were terrible (there were no words, only pictures) but after two hours, we got it done and she made me a root beer float as a reward.
We also talked more about Dan and I moving to be closer to her and my brother and sister-in-law, and we are thinking the best idea might be to make a separate living space by finishing Mom’s basement. My brother the architect is willing to help us with plans. Also, because Mom’s place is only about 30 minutes from St. Louis, it would mean we’d be closer to Siteman Cancer Center if/when I need treatment again.
Speaking of the cancer stuff. I did have a consultation with a neuro-oncologist at Siteman last week, and the news actually brought me a little relief. The doctor said that it’s not clear whether the growth they’re seeing on my recent MRIs is cancer growth (if so, I’m a little ahead of schedule based on what they know about my kind of tumor) or if it’s radiation necrosis (if so, the timeline seems to fit).
At the moment, the only way to be certain is for them to biopsy the area they are seeing and look at the cells under a microscope. Having had one brain surgery already, I’m not really excited about the idea of another one. And because of the location (my medulla) doctors aren’t really eager to start digging around in there either. For now all the doctors involved in my case seem to be recommending another MRI in three months.
I think a huge factor in waiting is that I’m not experiencing new or worsening neurologic symptoms and the growth is small. With a little time it could become more obvious which treatment plan is needed, and in the meantime I can live my life knowing that there are treatments available for either scenario.
Anyway, I’m still a little uncertain when my next Zentangle video will be as I still have a lot of to-do’s that take priority. But I am feeling the itch to draw again and set up my bullet journal for May (I skipped April) so that I can keep things sorted a little better in my mind.
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WELL FUUUUUUUUUUCK. It’s a couple of hours later, and I just heard that they want me to do low-dose chemotherapy again. I mean, it makes sense. I don’t disagree with their recommendation. But I was just starting to see some daylight after losing my dad, and now I’m preparing to be broke, fight insurance all over again, and just generally have no energy to even wipe my own ass.
I actually wrote what follows a few days ago and then forgot to hit publish.
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I have a had a few more days to process things, and I am feeling physically and mentally better. I always prefer to feel more empowered than less, so I’ve been taking care of things that ground me instead of letting myself be swept away by grief and anxiety.
I still feel those things plenty, but they are not all-consuming.
I got all my passwords and stuff updated and easy for family to access; I got the power of attorney, healthcare directives and living and last will stuff sorted for both Dan and I; I am in the process of getting my bank accounts to be our bank accounts.
I don’t want that crap still hanging over me when I feel even less like doing it. It gives me something besides sadness and anxiety to focus on. And that’s the real kind of self-care I have recognized I need right now.
Dad had everything perfectly organized, and in the midst of our grief, we struggled trying to get things sorted for Mom anyway. We still haven’t been able to unlock his phone, and I’m pretty darn sure it’s not because he meant it to be hard.
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Anyway, on Wednesday, April 21, I have an appointment with a new neuro-oncologist at Washington University (Barnes-Jewish Hospital) in St. Louis to get a second opinion and discuss what’s to come. I totally spaced out on a phone call I was supposed to have on Friday with my local oncologist here at Carle regarding what their tumor board recommends and had to reschedule that. So nothing new to report now, but check back later and I’ll probably have an update for you.
Good Lord a lot has happened since my last post, and advanced warning: this one is not going to be my feel-good entry of the year.
When we last left off, I was promoting my second-annual, read-it-for-free-in-March promo for Who You Gonna Believe. That went reasonably well, and a few people told me they enjoyed reading it. Always nice to hear!
I was a little late in setting the chapters back to patron-only after the promo, but I did manage to get that done a few days ago. For what it’s worth, I’ve decided to leave the first seven chapters open for public consumption from here on out instead of just the first one.
Shortly after my birthday on March 4, I took that Zentangle class I mentioned. It was a few hours long, and though I enjoyed it immensely, I knew that I had reached my absolute limit for online learning. That, in turn, made me worry about the Certified Zentangle Teacher scholarship thingamajig I’d applied for. I went from “oh, I hope get a scholarship” to “shit, I hope I don’t get it but if I do, I have to power through it.”
Well, luckily for me the Zentangle people notified me a few days later that I hadn’t won the scholarship anyway. That settled that, and I was so relieved.
But then my whole world came crashing down. My Dad died on March 22. As you might imagine, I’ve still got a lot of grief to work through. He hasn’t been gone that long and… I can’t even right now. Maybe I’ll try again later.
So naturally, the universe had me scheduled for brain MRI #21 this week, and I learned that my brain tumor has indeed grown. There was a little uncertainty about it after MRI #20. So Monday’s MRI included the more detailed perfusion imaging.
Anyway… I still haven’t summoned the strength to look at the official report with the specifics, but my oncologist described it to me as “small growth but in an area that makes her nervous.”
I feel like I had the wind knocked out of me by a duffel bag full of grapefruit when Dad died. And then, just as my respiratory system came back online and I took a big gulp of air in, I took another blow to the gut. I’m not going to sugarcoat things right now. It’s all a lot, and it feels like Dan and I have been dealing with various forms of A LOT™ for going on 8 years now.
My local oncologist is working with my oncologist back at Barnes-Jewish in St. Louis for me to have a consult. Clinical trials, potentially another round of radiation, and other meds are being discussed. Though I don’t know what my treatment plan will look like yet. Tumor boards have to review these things and whatnot. So I’m in a very hellish sort of limbo at the moment.
For what it’s worth, my first choice for getting care is Barnes-Jewish, and there’s a clinical trial going on there for IDH mutations (which I have) but I think it’s for Grade III tumors, and mine’s a Grade II. I don’t know, my doctors are looking into all the possibilities. Barnes is my first choice because it’s familiar and it’s close to my mom and my brother and sister-in-law.
In fact, Dan and I have talked off and on about moving closer when additional treatment was all hypothetical. We’d floated the idea of moving to be closer to treatment and our support system. Urbana is lovely, but we moved here because I got a job here. Now that I can’t work, I feel like we’re floating on a little buoy with no land in sight.
Of course, thinking about that kind of change in hypothetical terms was easier for me to wrap my brain around. Now that every little decision feels overwhelming and I can’t even decide what to eat half the time, I doubt I could handle all that a move would entail. I know I’m looking too far ahead, and that I should be in one-day-at-a-time mode, but knowing it and achieving it are worlds apart.
Anyway, for the time being my Zentangle videos and new chapters of WYGB are on hold. If I feel like working on those things, I will. But they’re just not a top priority. Clawing my way through the super important stuff until I reach a little daylight is my main mission. I will probably be posting updates here on the blog and on Twitter if you’re looking for them.
