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11.26.2024

There's No Place Like Home

The original house and garage

For those who don't know the backstory to my house, my great-grandfather built it in 1949, which means the grand dame turned the big 7-5 this year. It was originally a one-story-ish house with nothing but open land behind it. My great-grandfather would eventually sell the house to his daughter/my grandmother in the early sixties, and it would become the house where my dad was raised. Sometime in the early eighties, the house was completely reconfigured and a second story was added on, including a second bathroom, a master bedroom, and two spare bedrooms. The stairway was moved, windows were taken out and made into solid walls, rooms were added, etc.  I came along in the mid-eighties, so I only have memories of the second version of the house when the second story was already there.

My grandmother was incredibly fond of blue. Blue kitchen countertops, blue wallpaper border, blue carpet, blue curtains, blue couch, blue accent chairs, blue lamps, artwork with blue as the central color, blue-themed liners to drawers, blue siding. Just so much blue. Everywhere. Like her own version of Picasso's Blue Period, but more than half a century later and in the form of a house instead of a canvas.

I never paid attention to this fondness for blue as a child when my family would visit. I had no reason to. It wasn't until I bought the house for myself several years ago after she passed and thought, "Good heavens, how did I miss this OCEAN OF BLUE all these years?" I wouldn't be surprised if I cut open walls and found blue studs and blue cinder block.

I've slowly been updating the space and sending the many shades of blue on their way. I'm not trying to erase my grandmother's memory, but I am trying to eliminate remnants of her love of blue, one carpet fiber and one curtain at a time. The ocean of blue has evaporated considerably. The kitchen countertops are the last blue thing remaining. (But the kitchen is a giant project unto itself, so I will probably be living with those countertops for awhile.) 

When I first moved in, my grandmother was still alive but in assisted living. My brother and his girls had been living there for a period of time, but he was getting remarried and moving out. I ended up renting it from her (buying it wasn't on the table at the time) after my brother moved on, as my family did not want it just sitting empty and my grandmother's health was rapidly declining and the likelihood of her ever being in it again was slim. 

I never really thought much of the notion of owning a home. It wasn't high on the list of priorities or dreams in life. I was content to rent and had done so for a number of years. But I was also sick of sharing walls with other people, hearing screaming children, trumpeting trumpet players, pouncing cats and dogs,  and incessant Christmas music on loop. It took some time after I first moved in, but I was finally warming up to the notion of owning my own home.

So, when my grandmother passed in late 2021, my father inherited the house, and then turned around and asked if I would be interested in buying it. I was finally in a place mentally that I knew I wanted to buy it and be done with renting. All told, four generations of my family have owned it, and five generations have lived in it at one point or another. I remember when I bought it, I kept praying it would be a place of peace and retreat. 

I just didn't realize I would be the one who would need it to be a place of peace and retreat.

When everything went sideways in February, I moved in with my parents, for both safety and support. I was restricted from driving, so I couldn't go anywhere on my own, and with the seizures still happening, it wasn't really safe to be on my own anyway. I've been living with them ever since, and we all were fully anticipating I would be living with them until the end of treatment sometime next summer.

A more recent version of the house, but that 
blue siding is also gone now.
But by the grace, kindness, and faithfulness of God, I moved back into the house several weeks ago. Far, far sooner than any of us dreamed possible. 

I stood in the kitchen one day here recently, quietly in awe of how much had changed in just nine short months since the original diagnosis. I went from not being able to drive, living with my parents, and repeatedly having seizures to driving again, living on my own, and not having had any seizures since May 30.  I mean, I couldn't even cut up my own food seven months ago after the April surgery. I texted my parents shortly after moving back in and said, "You know I'm feeling overwhelmingly grateful when I thanked God this morning for blue kitchen countertops. 😂"

I have never been so grateful for the shade of my blue in all my life because of what it represents. The space feels so sacred to me now, to be back here in solitude and quiet. (Not that my parents were a bunch of crazy college kids partying it up every night. I've just lived on my own for a number of years and I like my space.) A place of peace and retreat from the mayhem of these last nine months.

Because it meant I was home, back in my own space, experiencing some sort of outrageous miracle. It has felt like one of the greatest gifts of my life to be independent again. Is there a long way to go still? You betcha. Does this mean I'm magically all better and the cancer is gone because I'm back on my own again? No way. 

But now, more than ever, I am acutely aware of the fact that there really is no place like home. 

Blue kitchen countertops and all.

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Functional updates
I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I continue to feel exceptionally well. I had an MRI on Sunday and discussed the results today with neuro oncologist. Nothing particularly notable in the scans, other than the size of the tumor is holding steady, which in my case is a good thing. Remember: the goal is not to eradicate the tumor (although, I'm certainly still praying for that to happen), or even for it to shrink. The goal is to stop the progression and stop it from growing into a more aggressive grade. He said today, "Your MRI's could look like this for the rest of your life, and I would be pleased."

Last week was my big work conference, and I am delighted to say that my brain was able to meet the demands of emails and phone calls we had coming in. Did I still have to slowly and methodically work through emails? Yes. I do have to read and then re-read both incoming and outgoing emails. If I get going too fast, I start to overlook things or misread sentences. (But hi, that's also just life.)

I'll have a little bit of a lag with starting round 4 of chemo because of the holiday and the conference disrupting when I should have had my MRI and monthly check-in, so I won't start that until next week.

This Thanksgiving will undoubtedly land differently this year. I am in awe of what God has done and is doing in my life. I will never be able to thank him enough. Happy Thanksgiving!

PS: Want to leave a comment? If you select "Anonymous," would you mind including at least your first name and last initial directly in the body of your comment? That way I know who you are!

11.12.2024

I Can't Even Count 'Em All

Million Little Miracles
Elevation Worship and Maverick City Music

All my life I've been carried by grace
Don't ask me how 'cause I can't explain
It's nothing short of a miracle I'm here
I've got some blessings that I don't deserve
I've got some scars but that's how you learn
It's nothing short of a miracle I'm here
I think it over and it doesn't add up
I know it comes from above

I've got miracles on miracles
A million little miracles
Yeah, miracles on miracles
Count your miracles, 1-2-3-4 
I can't even count 'em all
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I've got miracles on miracles. One, two, three, four, I can't even count 'em all.

This week marks 7 months post-op. Depending where in the timeline you ask me, I'd say it's been the longest 7 months of my life, and other times I'd tell you it's been the shortest. Looking back on all that has transpired, I honestly can't believe I'm still standing.

But with the passing of time, the gravity of it all continually hits me every day. To see where I was and where I am now is nothing short of a miracle. 

A miracle, people. A miracle

To watch me move now, you would have no idea seven months ago I had my skull cut open, had part of a tumor removed, and left the hospital with significant impairments to the left side of my body. Now there is very little I encounter in the course of daily activities that I physically can't do. The left arm has graduated to a solid three-star Yelp review. (I think it will only ever achieve four-star status if I can get my shoulder problem sorted out. I have a new theory on that matter, which may be tied to my diagnosis, but I'm running it by some docs to confirm.)

As a conference and event planner, I have to be incredibly detail-oriented in my work. The conference I coordinate with my two all-star co-planners is next week. The to-do list is long and the pace is frantic. We're hosting over 1,800 people online. My brain is able to keep pace with the frenzy of emails and phone calls. Seven months ago, I was sitting in speech therapy session trying to figure out how to tell time. 

A miracle, people. A miracle.

Seven months ago, life felt like a deep, dark black hole, and I didn't think I'd ever find my way out. I couldn't imagine a future where my life was anything other than grief and sadness. Light has broken through. You were right, Siobhan - the night won't last forever, and there are still a lot of good miles to go.

A miracle, people. A miracle.

I can lift my left arm. 
I can grip and twist and turn things with my left hand.
I can type as fast as I could pre-surgery.
I can wiggle my left toes.
I can drive.
I can cut up an apple without fear of losing a digit.
I can make it through months, not just weeks, without having a seizure.
I can see without experiencing any "neglect."

I've got miracles on miracles, a million little miracles.

Seven months ago, I was hoping to make it out of the hospital alive.

And here I am. Alive.

A miracle, people. A miracle.

I've got miracles on miracles. One, two, three, four, I can't even count 'em all.


Functional updates:
Well, chemo cycle number three should close out the week of Thanksgiving. I still have been feeling exceptionally well with minimal side effects. There are so many things, both big and small, that genuinely feel like miracles to me. I'm still not out of the woods by any stretch of the imagination, but the days feel less like dog fights. I get overwhelmed with gratitude at just the thought of how far God has brought me.

My blood counts are starting to drop. Not drastically by any stretch of the imagination, but certainly enough to make me more prone to infections and such, so I am more mindful of who I'm around and any sort of group event. I bought a t-shirt the other day that says "Immune-compromised. I need space." But maybe I'm just using a declining immune system to cover for my introverted ways. 😉

The seizure specialist tweaked the timing of my meds in the hopes we could alleviate the daily nap situation, but it hasn't really moved the needle. He suggested maybe lowering the dose on the other med, but it would possibly raise the risk of a breakthrough seizure. Without hesitation, I responded and basically said it's out of the question. It's not worth it to me. I still have such a terrible fear of experiencing a seizure again, and I'm not going to willfully elevate that risk just so I can avoid taking naps every day. (I know, you are probably rolling your eyes. Most people dream of taking naps every day. Meanwhile, I dream of staying awake all day! I have taken a nap of some form nearly EVERY day since June 10! Every.day.)

I have my first quarterly MRI the week of Thanksgiving and will meet with the neuro-onc that week as well to review the findings.

All in all, I am feeling pretty stinkin' great and grateful.

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