If you are reading this, hallelujah! We both made it to 2019.
Goal number one for the new year: check.
I began to update you earlier. But, as it turns out, it was the wrong day to update you all.
Words just wouldn't organize themselves. I've mentioned I'm not a natural organizer.
So, when I begin to write something down and the words are all out of order, I just stop.
I feel like I've been doing a lot of stopping lately.
Well, maybe not completely stopping.
But definitely moving in slow mo.
I literally feel like I'm in some bizarre special effect scene where the world is zooming around me at normal speed and then there's
me.
slow mo.
sometime around 1980
I had my first nightmare. I can still play it in my mind as clearly as the night I dreamt it.
Isn't that crazy! Almost 40 years later and I still have that dream etched in my memory.
Thankfully all the anesthesia, chemo, and other meds have not zapped it.
There is some funky stuff that happens to your memory with meds, though.
Like weird stuff. Some of you know what I'm talking about.
But anyway. The dream.
An almost five year old version of me dressed in white robes was running as fast as I could down a culdesac in Riverside, CA. It was a dark night, but amply lit by the streetlights.
No matter how fast I tried to run, my body moved in slow motion.
Which wouldn't have been a problem, except also headed down the same culdesac, but moving at a normal pace was Darth Vader.
He was gaining ground.
The panic at not being able to make my limbs get back in sync with normal time was severe.
Thankfully that panic woke me before Darth caught up and my dream life was spared by my real life.
way later than 1980
I don't dream as much as I used to. Pineal gland must be on the fritz.
But it's jumped into gear again and I've had a few more dreams than usual. Many have been nightmares.
Which I guess is understandable. Cancer is to middle aged me what Darth Vader was to 5 year old me.
One of the recent dreams happened the first night we arrived in Houston.
I left you all hanging the day I prepared to leave town.
Things were surreal that day and I spent the morning on my computer letting you all know what was going on instead of...say...
packing... Priorities, right? Ha.
I wasn't rushing. I had switched into a turtle mode in response to the stress. I've done this at work countless times before. When the to do lists are longer than the day. And you know it can't all happen. You switch over into turtle mode. He won that race after all. Not the rabbit.
I was plodding along in self induced slow motion.
One foot. One thing. One Step.
Then the next.
James had to work. So, mom and Eli were coming with me this time.
Tick.
There were all sorts of animal problems as nobody would be home during the week.
I had to get weather and pest proof feeders that could stay out and feed the dogs and cats for at least a week at a time so James could care for them all on weekends.
Tock.
I started getting the Sentra packed and James told me to take his car.
Newer, and more reliable.
But needed an oil change.
The oil change took forever and four locations before it could be done. Odd filter.
Tick.
Then I had to drive to Atlanta to get my mom before leaving town.
Everything said and done, my goal of leaving after lunch turned into sometime around 8:30 PM.
Tock.
I drove to Houston.
I was SO tired when I got there.
Like jelly legged tired.
super powers
Guys. I have a knack. If you want to stay in the crappiest hotel for the most amount of money, I can find that deal.
Whatever city. Whenever you want. I can make it happen.
Once I booked a room in Nashville- delightful city- how can you mess that up? Our friend Kay, who was staying with me was so glad I travel armed. We kept my little six shooter out on the nightstand that night. For reals.
It was a decision made after we marveled at the pry bar marks on the door. Someone had wanted out of the room really badly once.
Not into the room, mind you.
If that doesn't creep you out, nothing will.
hotel #1
So. This was a different place than we stayed our last visit to TX. James booked the last one.
I booked this one.
Crazy lobby. People everywhere. Men, actually. Lots of men everywhere. No kids and women. Weird. Just lots of men. People complaining. Desk lady trying to sort things out. A total mess in the breakfast area. Like disaster zone.
I thought... well, let's allow this brouhaha to get sorted out. My mom actually needed to run to a fabric store.
So we did that.
We returned.
Minus a few men and add a couple women. But still chaos.
I was getting a bad feeling. As we got our keycard, two more people were in the lobby to complain. One about bedbugs! Ew! It's hard to gross me out. But that'll do it.
We go to the room with the understanding we are searching for bedbugs before we unpack.
But, no need. When I stepped into the giant puddle of water runoff from the air conditioner that was so common to the floor the actual wood looking vinyl strips were free floating over the concrete, they shifted under my weight. And I smelled the musty air. I thought I might actually die in there.
So we went back to the lobby.
And I apologized for needing my money back.
Why did I apologize?
Isn't that the craziest thing? Of course I needed my money back!
Of course I could not stay there.
hotel #2
Blessed be the smartphones.
I didn't get the same deal James got, but thanks to a smartphone, I had another room booked at our last hotel in seconds. The Comfort Inn and Suites off Clay Road in Houston, TX is as Eli calls it, "clean and serene."
We drove straight over and got unpacked. But I was a zombie at this point.
NEEDED sleep.
I was out as soon as my head hit the pillow. And evidently I was dreaming. I know because my dream was interrupted by a dream. I don't remember the initial dream, just the interruption.
There was the classic white light.
You know the one. It shows up in all the 'died and returned to life' stories.
It was intense. White light in total darkness. And it felt so good. Like a tangible sensation of what love would feel like on your skin. It made you want it. It was so easy to move toward it. There was a sound like light sabers- or some large electromagnetic something- and it pulled with enormous strength. As the light got brighter, the sound got louder. I began to see this strange thing like my eyes moving past my eyelashes. It was like I was passing right through them.
And I was fighting the pull. It took all I had to fight it.
No! Not yet!
I could feel Eli pressed into my back as she slept and I yelled out that I couldn't leave her to wake that way.
I was so fearful in the dream because I felt I was losing the strength to pull against it. And the light felt so easy and peaceful. I actually wanted to just go with it. It would have been simpler.
Jolt!
I was awake.
Awake and shaken.
Heart pounding.
And again my dream life was spared by my real one.
Not exactly the dream you want to have the night before surgery!
And I had a 9 AM appointment across town to get a port installed for my new meds.
port #1
We arrived at a surgical center in Houston with ample time to fill out paperwork. Waited a bit. Got called back to a chair where they took some vitals, got some more consent forms signed and then had a series of people stop by to explain their part in my procedure.
Some lady showed us a cardboard display explaining how the port would work. It had a little rubbery example of what it would feel like under your skin. I had thought it would be different than my sister's. My mom said that was just like hers. We were happy as they said how the steristrips would wear off and then I could swim, shower, whatever! Skin is amazing, all the things it keeps us safe from everyday.
Then the anesthesiologist came and explained how I'd be awake and alert for the procedure. He would just give me something to take the 'edge off.'
He was a jolly man with a wide smile.
Following him was the surgeon who kept referring to my chemo, even though I kept telling him I wasn't getting chemo, as he explained the port again.
After that I put on my gown, got onto a cart and was wheeled into the room.
Mr. Wide Smile started an IV and I saw a nurse with a paper coming toward the surgeon who was saying "Wait! That's not what she's getting."
To which she replied "That's what it says" holding the paper out.
"Lemme see that."
Then the upside down face of Mr. Wide Smile popped over my head and said "Hey there!" and everything went black.
"You're all done. Everything went well," were the next words I heard.
I felt like a truck had run over me. They gave me a bottled water. I threw it up. I was walking into things. Held onto the walls. Wanted my clothes and wanted to go!
Then I saw the thing in my chest. I had tubes and toggles coming out of me.
All the images and sounds from before everything went black started coming into my brain and I could see they had messed up something. But I felt so sick I didn't care.
They shoved some other papers into my hands. Though, I didn't really recognize until a long time later what the new papers were.
I was supposed to go to the clinic and start meds.
Instead I went back to hotel #2 and I slept.
And we didn't get started until the next day.
Good news- the mistake was only in the information given. And, well, in not explaining there was a mistake. But the important thing was I indeed had the correct actual port in my chest! My port is not like a chemo port. It is an open line beginning at one boob then tunneled up under the skin into my jugular vein at my neck and then hanging down above my heart. Evidently they require much more attention and care. And, no. There's no swimming, etc. with this thing.
sometime around 1990
Maryjo Seigel felt like she was in a nightmare.
But Darth Vader wasn't after her.
And she wasn't asleep.
I bet it still felt like moving in slow motion, though, as the Doctor explained her lymphoma in real time.
The barrage of testing.
Tick.
The increasing information.
Tock.
Incurable. Stage 4.
Tick.
Second and third opinions.
Tock.
Unpleasant treatment options with horrific side effects. All with the knowledge that nothing would make it go away.
She plodded along like that turtle and did not rush into anything.
And...
Thankfully she found Dr. Burzynski. Thankfully her body responded.
Thankfully she vividly remembers the nightmare all these years later.
And so. I listen when she calls.
She's navigated this before. And is present to recount the memories.
And while I didn't understand what she was talking about at the moment,
My slow mo brain is beginning to catch up with her.
sometime around 1970
A cabin was being built in Appalachia.
I call our cabin a shack sometimes. I need a better name. It's neither a cabin nor a shack. Maybe I should call it a 'cottage.' Whatever it is, I like it. Quite a bit.
It was definitely a labor of love for the man who built it way back before I was born.
The love is seen all over. In all the little details.
So perfectly imperfect. Nothing cookie cutter or store bought. So many found things woven in.
The builder can tell you where every stone, every log, every leaded window pane came from. He's truly an artist. I literally have a wall that used to be 10th street in Atlanta. Sherman could have marched over my wall! So cool.
If you close your eyes you can just hear the granite whisper stories from the past.
Our original relocation plan had us living in the shack as is. Why not? It's lovely.
But, once we realized what a terrible renter Mother Nature was, we knew we'd have to use money from the sale of the big house for a modest rehab. This would leave us with a bit of a mortgage. We were trying to eliminate that part of the equation to balance out leaving my job.
Messed up the algebra.
Plan revision.
Then cancer.
Revision of the plan revision.
Then non FDA approved treatment opens up.
This could mean life. It did for Maryjo.
But it isn't covered by any healthcare. None of it.
Revision to the revision of the revision.
As glad as I am that I know. know. know. James Frick loves me...
Something I could only conjecture during regular times.
As glad as I am to know it during these strange times, I'm very sad I just spent all of our money in the process.
I know the sacrifice. I know the time. I know the labor.
I know the plans.
James says not to think about any of that.
So, I try.
But. Sacrifice, time, labor, and plans bought 4 months after we had spent some on earlier treatments.
4 months of a test zone.
so. scary.
Maryjo was concerned that the charming mountain shack, while great for regular life, was dangerous for fragile people. Could explain why I've yet to run into fragile people in the mountains.
I'm fragile for this time. The port makes me so.
I'm not very good at being fragile, it turns out.
And as it also turns out, there actually isn't much room for error here.
So. I haven't gone home for more than small visits since my last blog entry.
And when I go, I'm so limited in what I can do.
But, there is a lot invested here. And it's not all my capital. The time, energy, funds, worries, and efforts of others are all mixed in with mine. I must give it my best shot.
all the while
Tired. Sore. Sick. But oddly excited and grateful for everything happening.
Tick.
So much information and training.
Eli, Mom, and I were taking it all in.
Tock.
I was in cancer treatment boot camp for the next two weeks. I was in there with other beautiful patients. I plan to write about them sometime.
Tick.
I was so glad my sister called from Utah and said she was coming out to drive us back to Georgia. I didn't argue with her. Just said thank you.
Tock.
She stayed in Houston for a week with us. And she drove us...well...to our new home away from home.
Alan and Kay
If you ask James about them, he'll start by letting you know he is James Alan Frick after Alan Sims. His dad's oldest friend. And there's no such thing as Alan without Kay or Kay without Alan. They are a package. Perfectly whole. If you ask Alan about James, he'll start by letting you know he changed James' very first diaper.
I met them on our wedding day and they have since swallowed us up and made us f.r.amily.
I sent them a text message from Houston asking if I could move in.
Yes. I really did.
And they said - as only they would:
"We were waiting on you to ask! We have the upstairs all ready for you."
Now. I don't know if they just said that. I don't know if God really already told them I was coming or if they were actually scrambling around to ready the upstairs. But please understand this about these people. They have lived this same nightmare before. Kay is a cancer survivor. They not only opened their home to us, but fully expecting to have a sick person under the roof with zero delusions about what that entails.
They are saints.
Truly.
If you never have the great fortune to meet them this side of heaven, you won't be able to miss them on the other side. Not with all the bling they'll be lugging around.
Oh yeah,
I didn't make it back to Georgia without booking one last hotel in Alabama. Thankfully Eli noticed the fleas jumping off the bed onto her legs straight away.
Becky found a different hotel to move into at 1AM. True story.
port #2
In the midst of all my sitting and my plodding, many things have happened.
My port cracked. That's a big deal.
The ER didn't know what to do with me.
I visited Houston again. God travelled with me and Kay that trip. Literally in every step.
Then when back in GA my port was possibly infected.
So, I had to get a new one.
That's actually a big deal. Kay took care of things.
One was removed from the jugular and a new one added to my carotid.
I tried to go to Stone Mountain to celebrate Eli's birthday on surgery day. I don't know if God closed down the venue for me or if my ride slipped the attendant a note to say they had.
My ride that day is also a saint. One of those people who step in and step up to rescue you when you are not being smart.
If my new port goes down, there isn't another spot to put one.
James, Eli, and I have seen all the veneers of this life scrubbed away right down to the original grain of the wood.
And you know what? When it's all scrubbed away, we are still happy.
Not dancing in the streets happy.
But happily suffering in this time of suffering. God giveth and God taketh away.
Happily crying when we cry. God will replace all the tears with joy. It's a promise.
Happily laughing when we laugh. It's really medicinal.
Life is affecting us. But, I can tell we will make it.
I am struck by this particular season and it's oddities. I have indeed experienced fat seasons, lean seasons, high seasons, and low. But, this year has won most bizarre.
For sure.
2019
So, I'll raise a cup o' kindness and wave goodbye to 2018.
It has taught me more than any year to date.
It stripped us down to nothingness.
But God likes nothingness. He can get really creative amidst nothingness. We are ready for our new finish.
Which gives me all kinds of hopes for 2019.
So. Here's to 2019.
Here's to each of you!
And if any of you have experienced some nothingness in recent years, my prayer for you right now is that you are blessed beyond measure.
That every passing minute brings you supernatural miracles of the Great Creator.
I love you all.
Tick Tock.