Life of Brian & Angela: April 19, 2017

Wednesday was Demolition Day for his new home at 531 3rd St. in Ronald, Washington!

Brian in Lab Coat

Brian suited-up for Action!

What was under the old linoleum floors and the crappy carpeting? SOLID PINE FLOORS!

What was under the ’60s-style cheapo paneling? DRYWALL. What was under the Drywall? SOLID KNOTTY-PINE (PROBABLY TONGUE-IN-GROOVE)!

What was under the aluminum siding and Tyvek sheeting? Thin, cement-type siding shingles. What was under those? Solid pine siding, most of it in good condition!

It turns out the the house next door was an identical twin to theirs, and it’s still in original condition. So, they can see exactly what needs to be done!

They met the neighbors, and everyone seems very nice. They downed a few beers while watching the hockey game at the local bar, meeting most of the town!

Here are two views from their “commute” to Seattle through Snoqualmie Pass:

In short: They are ecstatic!

Health Update: My surgery yesterday to insert a J-Tube into my small intestine was successful! We are still awaiting “Orders” regarding when and how to start feeding me with what! We may not be able to start utilizing it until Monday. After that, I should start putting on weight (I’m  still down 20 pounds).

Upcoming:
Monday: CT Scans at Jewish Hospital
Tuesday: PET Scan at Jewish Hospital
Wednesday: Meet with UC Health surgeons in West Chester
May 1st: Meet with surgeons at the Mayo Clinic in Rochester, MN
May 3rd: Choose between UC Health or Mayo Clinic, and get the surgery scheduled!

Update on my Petition to Ivanka Trump: Today is Earth Day 2017, and as planned, I have declared a victory of sorts that 299 courageous people signed my Petition to Ivanka Trump!

A large Iceberg off Newfoundland

Newfoundland: Would you like some extra ice in your coastline?

The Jose Family Trust Closed on a House today in Ronald, Washington!

Behind the scenes, we’ve been working this deal for several weeks now, and today we finally closed on it! We’ve bought a one-bedroom rental property two hours east of Seattle:

Brian and Angela will be renting it from us, and living there on the weekends. Brian wanted to buy the house himself, but was unable to obtain a mortgage due to the poor condition of the exterior (no one would have given anyone a mortgage on it). So, we worked the financing another way, but it is essentially their house to fix up and remodel. Brian believes that he can easily open-up the attic and put in two loft bedrooms, making it a three-bedroom house. The house is heated by wood-burning stove, and wood is plentiful and cheap out there.

Once I recover from surgery, Jen and I plan to haul our Casita travel trailer out there for a few weeks to help them set up their new home.

Once I’m strong enough to sea kayak, hiking, or maybe even backpack, we’ll be inviting our buddies out there to share in the fun!

Health Update: We’re trying lots of things to help me get stronger:

Starting two nights ago, I’m getting 12 hours of nutritional IV though my Power Port every night.

On Friday, I will get a Jejunal Tube surgically implanted. Once that is done, I’ll be able to get serious amounts of nutrition fed directly into my small intestine! The procedure will also allow for a good examination of the tumor area.

On Monday, I will get CT Scans of the esophagus and stomach.

On Tuesday, I will get another PET Scan of the liver and lungs (to tell if there is any cancer detected there).

On Wednesday, we will meet with both surgeons for the first time, and discuss surgical options and timing.

 

 

 

Here’s the latest: Chemo Brain, Virgin Islands, Meds up the Wazoo and Cake

People have been asking about Doug and why they haven’t seen any new entries in his blog. So I will tell you. He is very sick.

It’s been 13 days since his last treatment and he continues to eat poorly and lose weight. I have heard about “chemo brain” but have never witnessed it until recently. In addition to the chemo, malnutrition and inadequate sleep have caused huge mental and personality changes. I don’t recognize my husband of 43 years. He also has bad headaches and together with the other changes, my concern was that the cancer had somehow spread to his brain. I asked that they do a CT of the head. Thankfully, it was negative.

More and more medications are prescribed, some are liquid but most are tablets which I douse in olive oil so they slide down past the narrow opening to the stomach. The small counter in the kitchen which we use as our bar, is now a miniature pharmacy where I pour, lubricate and crush large pills.

Fortunately for me, I have had wonderful support from family, friends and neighbors. Our son, Brian was here for a week. He arrived while I was at the hospital so my niece picked him up at the airport. Doug’s brother, Bill and his wife Jane came from Maine to help. Neighbors have walked the dog, cut the grass, made soup, and taken me to the hospital on a moments notice when Doug couldn’t drive himself home. My sister runs errands, buys groceries and helps with Alfie.

Jane and Bill have spent long taxing days at the hospital so Doug can get needed IV fluids. Today we met with the members of Team Doug to figure out a plan of care.  We talked about various options for nutrition: IV fluids with amino acids, minerals and vitamins through his port, a PEG tube in his stomach or small intestine. The doctor decided on the enhanced IV fluids over the weekend. We will meet with his surgeon on Monday to discuss feeding tube options. Yesterday Doug said, “I want a 2-layer yellow cake with caramel icing. Will someone go to the store and get me one?” Today, my sister delivered a 2-layer yellow cake with chocolate icing and Doug said that was great! He ate a small piece, so I guess you can have your cake and eat it too.

As you may know, Doug bought a refundable ticket to the Virgin Islands for Friday April 7th. Then it was changed to the 10th, then to the 14th and tomorrow he will cancel his trip for the foreseeable future. He is very disappointed, but at last he realizes that he is not in shape to travel.

Follow up scans will be April 24th and 25th. Then it will be time for the big decision: To have an esophagectomy or not. Stay tuned in, Doug will be back.

Nurse Jenny

 

 

A Pretty-Good Day (except for crashing & burning twice)!

Folks, I had a pretty-good day today! My son and I did some Qi Gong in the backyard at 8:30 AM with John, my mentor. I had to be to the hospital by 9:45 to get two liters of IV (but I had to fight to get the 2nd liter, and got angry at how slowly they were feeding it, and how long it look to get them to speed things up).

The Hospital Room

Preparing to get IV Fluids in my hospital room this morning.

The bad news is that by the time I got downstairs at 6:30 AM, I was crashing. It took until after 8 AM for the panic attack to be over. By 3 PM, I was sunning myself on a beach chair in the back yard. But, I waited too long to refuel, and crashed again at 4:45, not recovering until after 6 PM. Am I ready to travel? Certainly not yet.

The good news is that my body is craving fuel. In fact, it seems to go on strike every 75 minutes if it’s not refueled by then! Yikes! I need to figure this out!

A Once-in-a-Lifetime Opportunity: There is a rich publisher on the island who owns this hexagonal glass house:

The Hexagonal House

The Infinite Pool

He sends his favorite clients there for a week or two at a time, as a perk for doing business with him.

It turns our that Rick is a buddy of his, and since no one has it booked next Tuesday-Saturday, it is ours to use! As soon as I’m fit to travel.

 

Another Up & Down Day

Today, my radiation oncologist was blown-away after I went from talking with her normally to being completely out of control in the span of 15 minutes! At last my doctors seem to understand that I need some serious pain meds to avoid being in agony 75% of the time!

I need to postpone my flight to St. Thomas, since I am not yet well-enough to travel tomorrow as originally hoped. I waited 90 minutes for an American Airlines agent to call me back. Then, as she was making the booking, I was disconnected! I’m still waiting for the call-back.

My son Brian arrived from Seattle yesterday. I’m going to have him take care of the rebookiing so I can go to sleep now, since its 10 PM here. More tomorrow, hopefully.

The Agony, and the brief interludes of normalcy

Since noon last Friday, it’s been about 75% agony mixed-in with some interludes when I am perfectly fine.

Every two hours there’s a Challenge Match: How much food and drink can I choke down before I have to stop? On average, it’s taking about 90 minutes to get a glass of milk and a few ounces of food down. I’m hyper-ventilating most of the way, constantly on the verge of puking. When the esophagus flames-on, I have about 20 seconds to get something soothing in there before the nerve endings go berserk and a migraine explodes in my head; then I’m in total agony for at least an hour.

I’ve over-used my allotment of “magic mouthwash”; I can’t have any more, because it’s too hard on my heart. Have I mentioned Constipation Mondays? Never mind.

On the bright side, here’s a great shot of Natalie and Rick, who are patiently awaiting my arrival in St. Thomas:

Natalie and Rick2

Natalie and Rick at the XO Bistro – their favorite eating establishment!

All three of us are in transition to substantially-different lives than we have been leading heretofore! I expect we will all help each other figure out how best to approach the next chapter of our lives!

One more thing: In addition to having a sloop in the harbor, Rick has an RV in town as well! If I get sea-sick, we just jump in the RV and head-on down the road! Or maybe put it on the ferry to St. John!

But first, I need to get well-enough to travel. I believe I’m turning the corner on that (even though it feels more like a round-about at the moment).

 

Here’s my Rad Graduation Video!

Here’s what y’all been waiting for: After 28 treatments, I “graduated” to the bell-ringing ceremony. With the help of the Who-Dey Singers, we made it a tribute to the late, great Chuck Berry! We sang Verse One and the Chorus of Johnny B. Goode, which includes the line playing guitar like a-ringin’ a bell! It came out ugly, but everyone had a great time! Thanks to Dr. Cornelia McClusky for presenting my certificate, Rad Techs Gary, Eddie and James, fellow patients Dennis and James, and Amy, our videographer!

The complete, unedited version (sideways??; not working for now??):

I will try to get this edited, but for now: Enjoy!