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

 

 

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.

It’s 4 a.m.; I just played the only card I’m holding on change.org: The Cancer Card!

My Petition to Ivanka: My readers will recall that early on, I made frequent reference to my change.org petition to Ivanka Trump, asking her to persuade her father to change his position on Climate Change: https://www.change.org/p/please-save-the-planet

During treatments, I’ve taken my eye off the ball, and the petition has flat-lined. Today, I’m kicking-it up again, with the goal of having it go viral, getting as many signatures as possible by Earth Day 2017, which is Saturday, April 22nd. I will close the petition that day, and change.org will deliver our signatures to her then. Take a look at my latest post.

With Jaime

With Jaime, my terrific social worker, just before leaving the hospital.

Getting back to Friday: I felt fine until I started the 20-minute drive home (I was driving alone). Suddenly, my esophagus flared-up like it was on fire. My head started to explode. I used Qi Gong to maintain my focus until I got home. I was a basket case. I downed a big slug of my prescription Magic Mouthwash, and before long felt like a human being again.

The rest of Friday and Saturday I ping-ponged between near-normalcy and the “darkness at the edge of town”. Under-nourished; dehydrated; loopy at times. Trying like crazy to get any kind of food or drink to go down.

I did finally get some sleep last night, but that was over by 3:30. I had some things to do on change.org and this blog! It’s 4:30 now.

Getting back to Dangerous Dan McGrew: This is a wonderful poem. I made mention of something special about it in a comment last week, but most of you probably missed it. So, here I go again; it concerns this passage:

Then on a sudden the music changed, so soft that you scarce could hear;
But you felt that your life had been looted clean of all that it once held dear;
That someone had stolen the woman you loved; that her love was a devil’s lie;
That your guts were gone, and the best for you was to crawl away and die.
‘Twas the crowning cry of a heart’s despair, and it thrilled you through and through – 
“I guess I’ll make it a spread misère, said Dangerous Dan McGrew.

Dan was a card player, but this wasn’t about playing cards. In cards, a spread misère is a hand so bad that you believe you cannot possibly take a trick. But: It can still be a winning hand if you bid a spread misère: If you lose every trick, you win the pot!

Dangerous Dan knew from the moment he laid eyes on the miner that he would shortly be a dead man. His way of going-out in a blaze of glory was to bid that spread misère regarding the real-life hand he had just been dealt!! He was shot dead moments later, winning his final bet, but of course unable to collect! C’est la vie; c’est la mort!

Meanwhile, the Lady that’s Known as Lou gets the final line:
   The woman that kissed him and, pinched his poke, was the lady that’s known as Lou.

She’s kissing her old lover (the miner) tenderly as she relieves him of his “poke” (sack of gold dust), which she presumes he has no further need of! C’est la vie in Alaska!

One more synergistic thing: I received a book in the mail from my brother Bill yesterday (see photo below). The cover insert begins with this quote from the author:

We cannot change the cards we are dealt, just how we play the hand.

Book from Bill

I need your prayers and/or best intentions for me now!

I have been terribly sick the last few days, with today being the worst. I have lost nine pounds in nine days because I am unable to get much food or drink into my stomach. I have constant headaches; I am a wreck!

Just now I had a breakthrough: I was able to get some egg and milk to go down without making me sick. I believe in Qi energy, that our bio-electric energy fields are entangled with each other, and that you can help me through this from afar.

Tomorrow is my last radiation treatment (#28). The effects will linger for some time. Please help me to get healthy enough to make that trip to St. Thomas to see Natalie!

The Life of Brian, Episode IV: The Pre-Sailboat Years

Author’s note to readers: If you’re not writing Comments, or at least reading the comments posted by others, you are missing-out on part of the action. In particular, I’d like to call your attention to this comment from my wonderful friend Mariann, who was on my fantastic (if I do say so myself) sea kayaking trip to Maine and Nova Scotia last year:

With Mariann at Acadia

Mariann between me and my wife Jennifer on Cadillac Mountain at Acadia National Park

One of my favorite Tedx videos is https://www.youtube.com/watch?v=gXDMoiEkyuQ … I want to share it with you…the imagery is beautiful; the message, inspirational…Maybe you can find time to view it.

It’s a 10-minute Ted Talk. View it when you have time to relax and enjoy it!

Click here to see Mariann’s Flickr album from that trip. Click here to see the photo presentation that Jen and I made to the Hoosier Canoe & Kayak Club last fall.

It time to tack: The only things I know about sailing are what I learned from my son, who is self-taught. In sailing terms, my niece chastised me today for getting way off course on the Natalie thing. Well, I’m a single-tasker, and she’s right. So, HOLD ON TIGHT: I’m spinning the wheel! DUCK! The boom just zipped over our heads, headed for the other side of the boat! Brian has cleated the line, and is trimming the sail! Now he’s adjusting the jib. We’ve “come about” and are heading for Brianville! Note: There’s plenty more to say about my Mom and Dad, but that’s going to have to wait.

About Brian: It’s no accident that the title of this post is from a Monty Python movie (a parody of the life of Christ)! Brian loved all that Monty Python stuff, and so did I!

Here’s the prime difference between Natalie and Brian:

Natalie played-along with with society’s expectations of what she should do (at least during the day): Go to college, get her degree, work a boring job that paid fairly-well and had good benefits. It took her 14 years to realize it was killing her before she took her job and shoved it.

Brian, on the other hand, knew himself better. He waited-out one semester, and then gave it a half-hearted try for one semester at Southern Illinois University (home of the mighty Salukis). That was plenty! He had (almost) no further interest in “higher education”.

My memory isn’t what it once was, and much of this story may be a bit jumbled. But believe me, the things I’m about to tell you about my son are true, and I have plenty of tangible evidence to back me up. Here’s what I remember of his first 15 years after high school:

We gave him our old Dodge minivan as a high-school graduation gift. He tricked it out as his “purple pimpmobile” or some such thing, and after leaving SIU, headed out west. He spent a few months in a wonderful area near Boulder, Colorado, before heading to California.

He got an idea into his head: Why not get a work permit to work in New Zealand for a year? Indeed, why not? So he did! 

When he got to the South Island, he got an idea: He could take photos of tourists taking day cruises, jump into a speedboat, and develop and print the pictures by the time the boat returned! He could make a killing (this was just before digital cameras became affordable.) But….he needed a way-good camera. He told me he needed a medium-format camera that used film much larger than 35mm. I found one on eBay, won the bid for it, and had it shipped off to Queensland! Woo-hoo!

He decided to see some of the world on his way back. In New Guinea, he ran across some native folks butchering a whale they’d just caught. Packaging-up the blubber and such. Via sign language, he figured out what they were trying to tell him: “Hey, dude, we’re headed back out in our nifty dugout canoe (with side-rigger and sail) to get us another whale! You want to come along? You never forget it”! Brian knew where to draw the line, and politely said thanks, but no thanks.

In Bali, he suffered a potentially life-threatening gastroenteritis attack. We got a phone call. They needed us to buy him a plane ticket to Bangkok, the nearest place he could get proper treatment. Of course we did. He was hospitalized for several days. I believe he still suffers occasional latent symptoms.

Did he fly home then? No way! He had to see Cambodia and Vietnam first. He took some great pictures!

After that, Brian drifted up to Port Townsend, Washington. His Uncle Larry had been a cook on a commercial fishing boat in Alaska, and had even outfitted a galley one time. Brian had heard that good money could be made fishing in Alaska, and he’s always loved fishing. So, what the hey? He asked around and got picked-up as a deck-hand. He spent several seasons in Alaska, mostly safe “seining” in hatcheries close to shore. He worked the squid season near San Francisco at least twice. While back in Port Townsend, he learned to sail. He was saving-up for a sailboat of his own!

Author’s Notes, 6 a.m. the following morning: I’ve decided to take a cue from George Lukas and call this Episode IV. Hopefully, I’ll get back to episodes I-III faster than he did.  I also realize that I’ve not revealed what I think about Brian’s adult life, so here it is: There was nothing in Brian’s childhood that foreshadowed the astounding and remarkable adult life he was to lead! Brian has worked exceptionally hard to earn the adventurous life he has led. He has already led a more full and complete life than most people can conceive of (myself included). He has had glorious triumphs, and bitter, humiliating defeats. He has lost all his worldly possessions – twice! He has persevered in manly fashion, rising from the ashes (hint: His second boat was rechristened as Phoenix). In short, I have nothing but love and admiration for Brian’s conduct of his adult life. It’s a slow-motion movie, playing in real-time!

P.S.: A quick thank-you to Jen and Tony R., our near neighbors from all 16-1/2 years we have lived here in the BNE (Best Neighborhood Ever). Jen dropped a wonderful note in our mailbox yesterday. Jen is also a writer; she is finding inspiration in my blog. I am growing closer to many special people!

My Family: Each of us at a Turning Point

My friends, you cannot believe how wonderfully freeing this blog has become, and how many caring people I have re-engaged with so far. My life of outdoor adventure is turning into a life of inner adventure!

I need to step away from my musings on the past to bring you up to date on recent developments. But before reading on, please view this 2-minute video that my daughter sent me last week: The Secret of Life. If you like that one, Alan Watts has a series of ’em that elaborate on the theme. Please comment on how that video resonated with you!

Wow! Serious food for thought. My daughter questions why I never listen to music anymore. My reason has been that it keeps dragging my thoughts into the past. Combined with worries about the future, I felt myself not living much in the “present”, the “eternal now”, the only “time” we actually live in, moment-to-moment.

I’m the type of person who has repressed my emotions for most of my adult life. I’ve started listening to the Moody Blues a lot since I received that video. Emotions from my formative years are flooding-back. I’m becoming a more complete human being.

Health Update: I am still doing amazingly well. I’ve had 22 radiation treatments and five chemo treatments. The only time I feel weak and light-headed is when I overdo it in tennis. I am still playing twice a week, but not serving anymore (so I don’t get into extended rallies point-after-point-after point). It cuts the effort required in half. I am still playing the best tennis of my life. I got my fifth rolfing treatment Monday.

Prognosis: It’s not as rosy as I first thought. In fact it’s pretty grim.If I had waited much longer before getting diagnosed, the recommended treatment protocol would have been “palliative care”, which is basically Hasta la Vista, Baby, here’s your morphine.

The Surgery: My protocol calls for surgery 5-10 weeks following completion of the radiation and chemo treatments. There are two basic approaches: Open-up my chest so they can see what they’re doing, or do it orthoscopically using tiny cameras to try to see what they are doing. Here’s the plan of action:
1. Cut-out the lower 2/3’s of my esophagus, and the top part of my stomach
2. Staple-off 1/3 of my stomach, and throw away the other 2/3’s.
3. Reshape my stomach into an esophagus and punch a hole in the bottom of it.
4. Sew my new esophagus onto the old one skillfully enough that it doesn’t leak.
5. Oh, and install three tubes: One for feeding, and two other for God knows what.
6. And don’t forget: Complications are likely; some can be life-threatening. Some could drag on for years. Don’t plan on buying non-refundable vacation trips or plane tickets.

I’ll be fed through the feeding tube while healing takes place. Basic recovery will take six months to a year.For the rest of my life, all food and drink will fall directly into my small intestine (my stomach is gone). And lying-down flat will be a thing of the past, since whatever is in my small intestine would flow back into my throat!

I’ll be on the operating table 10-12 hours. 5% of the time, the patient dies on the table. On average, less than half live five years; most of those die in year one or two. They of course put what they took out under a microscope to see how much cancer they took out. About 25% of the time, they don’t find any! Zero! Zilch! Nada! What?! Are you kidding me? I really didn’t need this operation? Their answer: Well, of course you did: Your cancer isn’t going to come back where it was, because it’s not there anymore! It’s not clear how much the surgery would extend my life; it’s far more likely to extend my death!

Here’s MY plan: I’ll be getting more CT scans and a PET scan. If they don’t detect any cancer, they’re not operating on me. I plan to do “watchful waiting”: Check periodically whether any cancer is detectable or not. If/when they detect something, reassess. Until we find something, live my life to the fullest: Carpe Diem!

My daughter Natalie: Natalie was named after Natalie Wood, a film-star favorite of ours that died in a boating “accident” a few weeks before Natalie was born. We were living in South Bend, Indiana at the time (her latest moniker: Indiana Jose). I had just gone hi-tech with my music: A dual-cassette deck. Woo-hoo! I taped dozens of kids’ record albums, and we played them before and after she was born: Big Bird, Bert & Ernie (“Rubber Ducky”), and of course the Star Wars Christmas album! Our favorite: “What do you get a Wookie for Christmas, when he already owns a comb?“.

Natalie was singing and dancing and making-up plays by the time she was two. After we moved to Sewickley, PA she’d entertain her neighbors and friends on the back patio. She joined a choir in Sewickley, and the Young Naperville Singers after we moved to Illinois. She was in the play “Bye-Bye Birdie” in Junior High (but did not get the starring role). She did a little acting and singing in high school. She did some singing while attending Ohio University (a “top-10 party school”). She formed a Patsy Cline cover band (The Weepin’ Willows) after she moved to Chicago.

She worked a boring day job for an insurance company for eight years. She almost got hooked on the pay, benefits, security, etc. At night she learned “improv”, but hated it when someone stole the show from her. She switched to stand-up comedy, burning the candle at both ends for a couple years. Four years ago she made the leap: She quit her day job to pursue her passion for stand-up!

Note: I intended to add more here, but did not get back to it in time. I’ve corrected some typos and added some photos and links, so give it a second look!