The J-Tube Feedings have begun!

It took three days to get a J-Tube surgically installed. It took another seven days of administrative gobbledygook to get the feedings approved, orders entered, supplies delivered, and nurse scheduled. Last night I got hooked-up for the first time:

Doug 1st J-Tube Feeding

FEED ME!

I need to be hooked-up to this thing 20 hours per day. I need to find a better way of routing the tube! The food gets fed directly into the small intestine.

Health Update: We are still finalizing flight arrangements to/from the Mayo Clinic on Monday. It appears that all the pieces are falling into place for that to happen! Hurrah for PilotsforChrist.org! At this point, I’m leaning heavily towards getting the surgery done at the Mayo Clinic, even though there will be substantial non-covered costs for travel and living expenses. We are researching how to keep those costs to a minimum.

Scans all good; Surgery May 18th?

Apparently, my idea of “wait and see” turns out to be more like “wait and die soon”: The cancer will likely have metasticised to Stage IV before we detect anything!

Jen and I met with the UC Health surgeons and support team members today. The CT and PET scans both looked great. They have decided to change to the Trans-Hiatal esophagectomy approach: This will require one Mid-Line Abdominal Incision and one Neck Incision. Surgery at UC Health is scheduled for May 18th – assuming we “hold the Mayo”.

We are also flying to the Mayo Clinic in Rochester, MN on Monday, May 1st for a second opinion. We will be flying in a single-engine private plane from the Clermont County Airport. The exact itinerary is TBD based on expected weather conditions. We will be flying free of charge courtesy of pilotsforchrist.org! We will of course make a substantial donation to support their program!

April 26th is also Brian’s 38th birthday! Here’s how he described it in an email to family:

Angela and are watching Stanley Cup hockey at the local watering hole here in Roslyn after a long day of working on the new house.  Already we know a couple locals who frequent the place. I was asked if I wanted a birthday beer and this was what was delivered:

Brian Birthday Beer

Down the Hatch!

I’m not sure how I’ll get through it before it gets warm.  Anyhow, we spent much of the day investigating how to repair the siding. It turns-out that old growth cedar planks in the particular shape we are looking at have not been available for 50+ years.  When I took a sample in to the lumber store I was met with some skepticism.  My original thought has been to fake it with plywood or something more available, and then caulk and paint to seal it up and have a uniform look.   But as we got more of the asbestos tile removed, the old company miners’ shack that this house was started to emerge – it’s kind of heartbreaking to think of painting over it.  However, we need to seal it up because it’s drafty!

Brian with Tyvek.JPG

Angela removing aluminum siding and Tyvek!

Most of the original panel is in great shape; it has the dark color typical of the treatment given to old wooden houses in this area.  It’s a look that really defines Roslyn, and very difficult to duplicate with materials available today.  We’ve started to investigate ways to restore the original look, possibly by taking panels from the eaves for the repairs we’ll need and then installing cedar shakes over plywood up there.

Angela on back porch

Angela (on porch) celebrates completion of the back wall!

In the meantime, we took my buddy’s truck into Ellensburg and got some fruit trees to populate our otherwise sparse yard.   Hopefully, in a few years we’ll have apricots and apples!  That’s my update for now, we’re pretty stoked!

 

Life of Natalie & St. Rick: April 23rd, 2017

After an extended hiatus, it’s back to Natalie! Here she is enjoying her last afternoon (at least for now) in St. Thomas:

Last Day on St Thomas

Paddle tennis, anyone?

I’ve been keeping a secret for a while now; here it is: Rick asked Natalie to marry him, and Natalie accepted! Tonight they are celebrating their last romantic night together for a while, having dinner at my expense!

The First Course

The First Course at the Smoking Rooster BBQ!

Natalie at Dinner Apr 23rd

Natalie bought 15 raffle tickets for “mini” Fender Strats!

Natalie and Rick

The newly-engaged Happy Couple!

Natalie is flying to Chicago tomorrow, where she will spend the night in the room she sub-lets from her high-school friend Dan! Tuesday morning, her college friend Brynne will pick her up and drive her to Cincinnati. We expect that Dan will also come along for the (5-hour) ride.

Dan having a drink

Dan having one too many!

Brynne with Newborn baby

Brynne with her newborn: Harriet (Hattie) Lin Hovde: born 2/11/17; 7 lbs., 2 oz.

Health Update: The good news is that I had a J-Type feeding tube surgically installed on Friday. Here I am enjoying the proceedings:

Doug ready for J Tube

Lights Out, please!

The bad news is that I’ve not yet received any “orders” to be fed anything! Hopefully, I’ll start receiving large quantities of real nutrition tomorrow, and will start putting back on some of the 20 pounds I’ve lost!

Next week: CT scan Monday, PET Scan Tuesday, meet with UC Health doctors Wednesday!

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