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Carolyn

Today would have been my mom’s 67th birthday.

 

We lost mom to a glioblastoma, an extremely aggressive type of brain tumor, on 2 November 2016.

 

She was first diagnosed on 1 July 2015, and with a whirlwind of small and amazing miracles, she had surgery just 6 days later and her surgeon felt he was able to remove the entire tumor. This almost never happens with the glioblastoma, as it grows very quickly and typically winds in and around the brain. Mom’s was caught. And caught early. And was operable. She made a quick recovery, coming home to stay with us just 5 days after her surgery.

 

Follow up care with the best oncologist, Dr Roy Williams, oral chemo and radiation. She lost very little hair through the process and physically recovered about 80-90% of her normal self.

 

She passed the six-month mark, still all clear. Typically, if a glioblastoma recurs, it’s within the first six months. Sadly, mom is anything but typical. In May of 2016, during a routine MRI, they discovered the glioblastoma came back. And it was bigger this time.

 

Since it was in the same area, surgery and radiation were out. Briefly, it looked like mom may have been eligible to join a glioblastoma clinical trial at Duke University, but getting the tumor reduced in size and her mobility didn’t overlap. She put up a damned good fight.

 

We had the most amazing home care for her final weeks. Preferred Health Staff. They were probably one of the best decisions I have ever made. I will forever be grateful to all the caregivers, especially Alissa. Not only were they there for mom, but they were a tremendous support for me in mom’s final days. And of course Oliver did his best to keep everyone’s spirits up.

 

The caregivers, Marc, Kelly, Oliver, and I were all with mom when she passed. 

 

I will always miss her.

 

 

Relocating the blog

Thanks to our good friend Sean, Oliver’s Bungalow Blog will be relocating soon. Sadly, Blogger is nearly impossible for me to use to create posts with multiple photos, hence the change.

Ipe wood porch floor

EEEEE-pay!   We opted for tongue and groove flooring for the porch, just in case we would ever decide to enclose the porch with screen or make it into a sunroom.

Its such a beautiful, dark, rich, red color. I just love it!

The red of the ipe is an excellent contrast to the green siding.

And of course, the ipe looks good with Oliver too!

Now, a few serious points:  

• First, the recommendations are to use a diamond saw blade. Take that seriously. If you try to cheap out, you’ll just chew through the ipe, mangling it, and you’ll run through regular saw blades like crazy.

 

• Secondly, the sawdust it creates is fine, like talcum powder. Oliver and I discovered the hard way that it can cause a super itchy allergic reaction on the skin. I walk around barefoot a lot and of course Oliver is always barefoot. I didn't find any info inline about this, and the allergy specialist i saw treated me like i was crazy. But once we made the correlation and took measures to keep the sawdust cleaned up, we both stopped feeling itchy skin.

 

• Third, the precautionary measures i did find while searching for allergies to ipe are to use a respirator. Breathing that powder fine ipe sawdust would be all too easy, but it can easily cause serious and permanent lung damage.

 

• And fourth, the ipe grain is so tight it doesn't absorb much. No stain. Just oil it. With the weather we get here in Pennsylvania, we should oil it in the spring and fall. But we rarely get to that. And when they say wipe on, wipe off the oil within 30 minutes, do that. We learned the hard way. My handyman didn't read the directions, assuming he knew what to do... Marc and i spent all summer trying to undo the horrible sticky residue. I tried a bunch of things before calling the company. They had two suggestions. Denatured alcohol or sanding. Im not fooling around with sanding it, so we bought a stiff bristle scrubbing brush mop head and a couple gallons of denatured alcohol. It still hasn't all worn away, but it’s much better now. We no longer stick to the floor when we walk!

Bear with...

Between changing technology and my lyme brain, I had a spot of difficulty with the previous post. We are researching alternatives to Blogger. I appreciate your patience while we sort this out. In the meantime, here’s a picture of Oliver as a reindeer!

Siding

Let’s see... where did we leave off... ah yes! The siding!

 

Nearly five years since the siding was installed, and I can say with conviction that I’d absolutely go with the James Hardie cement fiberboard all over again.

 

Now, I was very sick during this project. So sick that I remember briefly waking one morning to the sound of siding being installed just behind my headboard. KaTHUNK! KaTHUNK! KaTHUNK! goes the nail gun. I thought, oh, Bill’s here, and immediately fell back asleep.

 

Although Marc and I had been friends for many years, we had only recently begun dating, so (perhaps unfortunately) he didn’t interfere with the construction projects. That was mom’s domain. 

Looking back, there are a few things I wish we would have done differently.

 

The faux bead board porch ceilings could have been done using a James Hardie product instead of the vinyl composite. I was told that was the only option aside from wood and I was too sick to research it myself. Some things you just have to let go.

We clad the back porch pillars in Hardie’s faux stucco texture panels. Then they were framed out with slim trimming. If I had to do it again, I’d say no trim, and go smooth instead of stucco texture.

 

 

And the biggest... I’d rework the placement of the back porch stairs and pillars. In the winter, the landing and bottom three stairs are exposed for snow and ice. And the location of that pillar is awkward for the symmetry of the house. I’m sure some future owner will be cursing me...

 

 

 

Those points aside, I love it. We often get complements from people walking by when we are working outside. 

 

And the best big news...

Marc and I got married this fall!

But first...

...some pretty big life changes, and why I seemingly abandoned this blog. Please bear with me, I know this will be lengthy.

In 2012 I got sick. Really sick. So sick I could no longer function. I had difficulty comprehending when people spoke to me, struggled to read. Extreme sensitivity to light and sound. Touch registering in my brain as pain. Whole body aches and pains, like coming down with the flu. Low grade fevers every single day. Numb, tingly areas on my skin, random places. The skin on the soles of my feet hurt so; felt like walking barefoot on sharp gravel.

New meds from my new rheumatologist helped with the pain a bit, but it wasn’t enough. But the fatigue, oh the fatigue, was the real clincher. How could someone so young, who looks fine, be so ill?

So ill that I could no longer stay awake for more than an hour or two, sleeping upwards of 20 hours a day. My mom said even I fell asleep while eating.

So debilitated that I, at 32, had to have my mom help me bathe and dress. For a while she delivered me and collected me from work every day. My coworkers, so very generous, worked with me as best they could, but I felt like a really lousy employee. I couldn’t really comprehend anything I was reading by then, but wasn’t really aware, just thinking I’m not trying hard enough.

So lost in this mucky, murky brain, there were times I didn’t know where I was. Or who I was. Afraid I was going crazy, I didn’t tell anyone that last part till years later.

So weak I remember hardly being able to hold myself upright in the chair in my rheumatologist’s exam room the day he said I should ask work for a medical leave of absence. Even though he didn’t know what else to treat.

To some of you out there, this may be sounding all too familiar...

Mom took me to doctor after doctor, every test under the sun. Nobody had an explanation, much less a treatment for me.

One day, before my medical leave of absence, I was talking to my dear friend Leslie at work. I had a huge stack of old tests and blood work that my family doctor had run over the past twenty years, ready to see yet another specialist later that day. She asked if I minded if she looked. Nope, not at all. I’m not that private, plus I was desperate for an answer, ready to try anything.

Leslie and her entire family have been battling with Lyme, and other tick-borne infections, for nearly two decades. She’s repeatedly asked me if I’d been tested for Lyme. Yeah, yeah, my family doctor testes me frequently. And as we worked through that stack we could see those test results, every year or two, with the same results- a big negative at the top of the report.

Then Leslie began trying to explain the results of the Western Blot to me. You have antibodies to this, this, this, and this, she says. The numbers are low. Too low to be “positive,” at least by the CDC’s “criteria.” But if you had never been exposed, those numbers would be zero.

And suddenly the light bulb went on for me. The way she explained that made sense. Here I had been thinking that because Leslie’s whole family was dealing with Lyme, she saw it everywhere. Nope. Leslie sees Lyme everywhere, because it is everywhere!

Well, this was one rock we hadn’t looked under yet. When mom came to pick me up from work that day, I asked Leslie to explain it to her, I’d never be able to articulate all that back to mom, much less a doctor. Mom listened and we began the hunt for a Lyme-literate doctor. Eventually we found a great one, and with each infection we treated, my health has improved!

Fortunately, I have an amazing team of doctors. My awesome family doctor who’s willing to listen and learn, and who take the time each patient needs at every visit. A (sadly now retired) rogue rheumatologist willing to try new things and fight the insurance company for me. A terrific and well informed Lyme-literate doctor. And finally my hematologist, another rogue, and real and true gem. Without these amazing, dedicated doctors, I truly believe I’m not being overly dramatic in saying that I would not be alive today. They have my eternal gratitude and love.

I know this was a long post, and thanks for sticking with me. It may sound like it was easy, but please believe me when I tell you it was a long, hard road full of friends, family, and doctors who clearly thought I was lazy, or crazy, or worse. Luckily for me, I have some truly amazing people and doctors in my life who fought on my behalf when I couldn’t and supported me through all this. I’ve skimmed over the worst of it, most of that time is a foggy jumble in my memory anyway, now we are out the upswing.

Yes friends, it’s a new year, full of new possibilities, a fresh page, and I’m ready to reclaim my life!

Welcome back!

Well folks, it’s been a long time… too long; but I’m back and ready to take you on a journey.   A lot has been happening; plenty of fun projects, including a few that are already finished!  Who doesn’t love a good before and after?

P.S. Oliver is happy and healthy! That face may be more white and he sleeps a lot more these days, but his heart is still all puppy!