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Restoration, Renewal, & Hope: The Difference A Month Makes

Taken just five days after brain surgery, December 4, 2018

The scars on my forehead are gradually disappearing.

Forehead scars fading, January 3, 2019

My 8 inch-ish C-shaped incision behind my ear where a piece of bone was removed for surgery and then replaced with titanium screws is also healing. The muscles and nerves there do cause me some discomfort, and I’m having to be sure I’m moving and stretching by turning my head often enough to avoid creating strictures.

I need to keep my head on straight! Literally.

The hair behind my ear was clean shaven for the incision during surgery. The neurosurgeon left a layer of hair that adequately covers that scar. He shouldn’t quit his day job, but it’s clear he is good at what he does do! The good news is that my hair in that area is already an inch long. We’ll see what I do for a hair style once everything is healed, hair grows long enough, and I can return to my actual hair stylist. That is our friend’s, Michael at Identities in Kalamazoo, area of expertise.

I’m nearly off all pain medication. I’ve been off steroids for about 10-14 days. I am definitely thinking more clearly now that I don’t have a tumor, am not on steroids, and I’m going off pain medication. I’m finding myself less tired during the day too.

I’ve walked up to 3300 steps out on the road in front of our house with my bright red walker. There is one small hill that I call “you won’t own me” that does get my heart rate up and kicks my rear. Last year at this time I would not have even considered it a hill to be conquered. In doing my walking, I have put myself in great shape for the vestibular physical therapy I’m doing at Core Balance in Kalamazoo three times/week, an hour each time. And boy, let me tell you I leave there with rubber legs. I work hard. They are encouraging me to do as much as can at home, and that includes walking, grocery shopping, housework and homeschooling, but nothing that involves ladders.

I’m sleeping, and that is HUGE. It’s an incredible gift.

I still have facial droop and numbness. I still can’t blink my right eye, and if I’m not careful, could actually sleep with one eye open. I CAN drink with a straw and eat on my right side, although I have to be careful not to bite myself. I have hope that this will result in full facial functioning in coming weeks or months. While I was at Walmart the other day, I forgot that I need a straw to drink . I took a swig of Sprite and spilled it all down my front at the checkout. That is embarrassing, and frankly, this is part of a grief process that I am going through. Even though the people that love me aren’t noticing some of my limitations, I do. And they can’t be minimized to me. I don’t like scaring children when I try to smile at them, and can only do what looks like a grimace. Strangers can just be rude, and that is hard to take.

Keep your big girl pants on, Deb.

That’s harder to embrace than I realized it would be. And, often, my family receives the impact of my impatience, anger, and demoralized feelings. So here I am on January 3rd, trying to keep up the good fight and to keep faith. (2 Timothy 4:7)

January 3rd, the difference a month makes: forehead scars are lightening, less tired looking, inflammation reducing, same attempt at smiling.

Clinging to Restoration, Renewal, and Hope in 2019,

Deb

Real

Hi, Family and Friends. It’s been since December 5th that I’ve been able to update, and after a rigorous few days up here at Mary Free Bed in Grand Rapids, I thought I’d give a quick update.

I had a piece of my skull bone behind my ear removed during surgery, and I still have quite . a bit of brain and scalp swelling from that. I still have facial droop. Speech is good, though, and so is swallowing.

I am still really unable to handle visitors, and that is mostly because of the vestibular hearing loss and brain processing. I can’t handle more than a few minutes of talking at a time without severe exhaustion, and I can’t have competing noises. I can’t handle the television or music either.

At my initial arrival to Mary Free Bed, I was still a fall risk. I basically have done nothing independent of a nurse or patient tech until today since prior to surgery. I’ve been working with PT, OT, and ST all week and weekend since my arrival. There were many impairments pre-surgery, actually, that we were not aware were impairments until I started therapy here. What I’ve learned is that for every day one takes of rest prior to surgery, four days of therapy are added to the post surgery regimen!

I worked really hard at PT through the weekend, actually, and today for the first time am able to self ambulate around my room and to do self care. Until Peter is cleared for my safety, which he needs to be up here for, I am not able to walk halls. This would benefit me greatly and benefit my ability to go home, but I also need him to see what I’ve been doing for therapy so we don’t have competing agendas. I will be going home with some assistive devices, but mostly for when I’m running errands or doing PT. I will be doing therapy three times/week once home, and in an outpatient situation. I will be in therapy for at least a year. The surgical recovery is only what is up to 3 months, but brain recovery is going to take much, much longer.

The long and short is this: I’ve worked really hard these last few days, and as a result of that hard work, will get sutures removed on Thursday and will likely be discharged to home on Friday. I still need to keep a low profile for quite a while longer.

We still don’t have a radiation verdict.

The girls were up here last night to visit for the first time since prior to surgery. It was a hard visit. There are lots of “scary” feelings, and concerns. When they left, I was super homesick, though.

I miss my family.

God is good, and I am grateful for everything.

I am grateful to be here.

I’m grateful for healing, even if it is going to take a long time.

In the meantime, we’ve had a new well dug. Hopefully that will be fixed by the time I’m home. I’m uncertain of the communication behind this process. Peter is trying to finish semesters, the kids are doing school. We’re trying to keep a sense of normalcy when nothing is normal. And there are already a ton of appointments to be sorted through all the way through February.

My parents are leaving this weekend.

So that is my “real.”

That is our “real.”

Blessings,

Deb

Update, Entrepreneurship, And A Visit From The Flexi Founder

In his wisdom. my son Andrew said “Mom. Thursday was hard. It was really hard seeing you so impaired. You were so swollen and swelling at we watched into the night on Thursday. Even I had to cry. But don’t delete these photos. On bad days you are going to need them. You will have come so far and you will need to know just how far that is.”
Even though we have one, Lydia is unable to view my “scar” photo. My right ear and neck are very swollen. Today I am very dizzy, having finished both OT and PT, and waiting a bed placement at Mary Free Bed in patient rehab for up to two weeks . This is what is next on my agenda. This is over 40 minutes from my family, and a big sacrifice for everyone. I need to get well. Staff here at Bronson is so good about anticipating my needs, and at home things are “reactive.” Just how much stress the family is all going to be under is significant to me! I need to go rest well where needs are less stressful to the prepared staff.

Yesterday an awesome surprise came in the form of our CEO and flexi founder, John Dorsey. I had had been up many hours in the night very sick, and I had literally been “allowed and encouraged” to sleep. No one at the hospital knew John was coming or the significance of the fact for my family. They would have managed differently if they’d known.

My kids got Entrepreneurship 101 from one of the best on Monday afternoon. They got to eat lunch with John Dorsey, founder of Lilla Rose, and talk the future of the company. That he invested in my family, in my children, in their crisis means so much to me!

Thank you, John! Seeing our situation as a “Unit” and not just me with a difficult thing to overcome means much.

Lydia, John Dorsey, and Andrew

Peter and John Dorsey

So today: A little more healing. Vulnerable, raw, tired, dizzy, loss of some modesty, loss of my “control freakishness”, memory loss. I will count all loss gain in a few weeks.
Preparation for more future. That describes my day.

12/04/2018, 9:30 AM, Post breakfast, post shower where they let me wear real clothes! And using a walker because I’m a Fall Risk…

I’m in a good place!

 

Blessings,

Deb