Tick Tock and Terry

Well, I start procedures and chemo next Thursday the 11th -it seems so far off, but it's the soonest the doctors and facilities will be ready. I'm using medication to keep my blood sugar low to slow the cancers growth. It's taken me a few days to learn to fuel up before an activity or risk a blood sugar crash (tired and dopey).  In addition we are meditating and walking  to keep anxiety down.

My cousin Terry was by coincidence, in town from California, on Saturday while my brothers were here. So we had a wonderful brunch together. I felt honored to be in the company of someone that had become an Eagle Scout at age 51. It is an amazing story, and let's just say he's done it now for himself and for all the right reasons rather than for his father. 

Gregg, Terry, Steve, Kevin, Elyse, Jude, Dixie, and  Breeze

Lining Up Treatment | Memorable Day

Gretchen our treatment coordinator emailed to schedule me to start chemo treatment, assuming I am accepted for the trial on June 9th, five weeks since my cancer was discovered, and one day after my port will be installed. This is the best news we could expect. 

I got the news as Dixie, my brothers and Elyse were walking over to see Multnomah Falls. We opted to do a one mile hike to walk behind the Upper Horsetail Falls, rather than hike up the much more crowded path to the top of Multnomah Falls. After seeing the falls Elyse treated us to a late lunch at Skamania Lodge, overlooking the gorge.

Next Steps After Sampling Steve

The procedure for getting a liver biopsy from Steve went quickly and uneventfully. The analysis of the sample will confirm whether or not Steve is eligible for the clinical trial. If so he's set to begin chemo before or after they install a port. If Steve is not eligible, we will still stick with Dr Picozzi-he's by far the best expert around. We should know in about a week or so. 

And oh yeah, here's the artwork in our room to inspire us...

Soup's Up!

Over 20 friends traveling from as far away as Seattle, participated in this year's Soup Swap. Deb, thank you for the brilliant idea of going ahead with this years get-together and then volunteering to host this event. We had a dozen homemade soups to sample from, representing practically every continent. 

We're glad too that in addition to each of you being introduced to some new soups and flavors, some of you discovered new friends. Using soup to share more than soup, is part of the reason we love this event.

Just like eating soup warms us up inside and fill us up, the diverse, warm and open conversations we had did the same for my soul. And as a bonus, Dixie and I took some of it home - they say it's always better on the second day :-)

We hope you found the Soup Swap as warm and fulfilling as we did. Thank you friends.

Steve and Dixie

 

Gratitude for my Fishing Friends

It was nice to have David, Kuni and Brian come by with bagels, cream cheese and lox this morning. Dixie joined us, and we had a great time over breakfast. Then we set about formulating an approach whereby my friends would help me downsize the fishing and fly tying gear I have. I am so grateful to each of them for volunteering their time and effort to our benefit. It a great relief for Dixie and me that they will help us shortly, so we can enjoy ourselves a bit more now, before I hit the rough patch (chemo) ahead. Thank you guys, and Bart and Timothy too- the time we have now is invaluable.i look forward to fishing with you all too!

Then later today I had wonderful and heartfelt  conversation with my good friend and original fly fishing partner, Herb. He's one of those people one immediately feels comfortable and friendly with.

I'm proud to have you all as my friends.

Steve  

A Port in a Storm | Brotherly Love

We had a long day up and back from Virgina Mason (VM) in Seattle today. It's 3 hours each way.  We started by signing the consent for the clinical trial. Then the trial coordinator, Gretchen, squeezed Steve in for a CT scan to follow immediately after the real reason we went up in the first place - for a consult with the surgeon that will install a port through which the chemo will be administered. 

Next Tuesday, we go back to get a biopsy of the liver growth via an endoscope (an outpatient procedure-amazing!) That is required before Chemo can start.  Right now the installation of the port is scheduled for June 8. So starting on chemo looks to be two weeks out yet. As a dear and wise friend suggested, stay focused on the next step, rather than getting stressing out on looking too far ahead. So, today we got  three things off the checklist to starting treatment, two more to go!

We're looking forward to Steve's brothers, Gregg and Kevin,with their significant others, staying with us next week. They will help us start downsizing our possessions, and we plan to have fun together. We are warmed by their generosity and love.

The Peony and the Dragonfly | Betting on One Trial Now

Last Christmas Dixie got us gift certificates for Bottle & Bottega, a place that combines a painting class for newbies with drinking-an essential lubricant for non-artists. We participated in a class focused on mixed media collages - blending painting and clippings from magazines, old calendars, maps, etc. As Dixie noted, it's no surprise we both picked scenes from nature.

I confirmed to MD Anderson we would not pursue a clinical trial with them at the moment. Nor would we pursue a trial with a small local oncology group. So we've got everything riding on a Virginia Mason clinical trial now. Chances seem good I'll be eligible.

Can't Start Treatment Soon Enough - Gulp

Got a call from Virginia Mason to set an appointment to do a biopsy on a outpatient basis - so will have it done next Wednesday. One other procedure and a CT scan, then if all indicators look good, I start chemotherapy.

If you would like a point of focus for your thoughts and prayers, I'd suggest they are towards 

. my elegibilty to enter the trials,

. getting the added immunological ingredient (vs I am control subject that gets just standard treatment; 50/50 chance), 

. the treatment being effective with minimal side effects or complications

Thank you, we love you all. We've been floored by the quantity and depth of support we have from each and every one of you!

    A Japanese Iris growing in our yard.

What We Can Expect | Gosh She's Good!

Worked on getting more around the house in order. Also learning how the biggest delay in our healthcare system may very well be approval from the insurers for tests, procedures, etc.

===========

Dixie has talked about how her class to prep dogs and handlers to do agility. I've never attended her class until tonight! This was the last class, where the attendees actually used all the pieces of agility equipment together. What did they do the prior five weeks? Worked to etablish a stronger rapport and better relationship between team members (human and dog). Only then did the team try the real thing (there's a life's lesson in there somewhere); one or two new pieces of agility gear a week.

Dixie is a very, very good at teaching- wow! I wouldn't have experienced and appreciated this facet of her had I not watched her teach!

Around the House | Decision

We are. focused on beginning to downsize, so we can move into a smaller place if we choose. So, my brother Gregg came down from Seattle on Saturday to show me how a power eBay seller does it and help me begin to post some of the big ticket hobby items I'd like to sell. We enjoyed working with him on this. Dixie also took the time to do routine house work. some research and catch up on correspondence. We went out together had a nice dinner and conversation at a sushi place just down the street.

Dixie and I are pretty convinced about the Virginia Mason's trial so will call them to confirm my participation tomorrow with the hopes of getting the rest of my tests and starting treatment ASAP. There's just too long a delay to start at MD Anderson and traveling down there weekly is almost certain for the first line or treatment-!which would not make a great quality of life for either of us. 

Then tonight we saw a beautiful scene combining colorful clouds and our rhododendrons...

 

Progress! Feeling some relief :-)

Feeling more at ease-finally some clarity and what can be expected coming into focus. We had consultation with Dr Picozzi at Virginia Mason in Seattle today. They serve more pancreatic cancer patients than most any other clinic on the west coast, so they have more experience in it than community practitioners. Dr Picozzi is offering a trial that is the best to date, and time is of essence, so we are proceeding with me getting tested and signed up and started on chemo over the next two weeks, while we see what MD Anderson has to offer (surgery and radiation therapy are not options). Not even experts can judge the success of one treatment over another so it will not be a decision factor. A big factor is quality of our life -traveling to Seattle is more accomodating and affordable than Houston. Both Virginia Mason and MD Anderson have reputation for good patient centered practices.

If Accepted for Trial, Decision Tomorrow

We are heartened that we may be accepted for treatment at MD Anderson for a clinical trial. But it would delay clinical treatment locally at Virgonia Mason (who we see tomorrow) by a week. And it's hard to say if what would be offered at MS Anderson would be that much better to delay. Decisions, decisions.

Mentor for Eric?

Hi All,

I have been a mentor to a 16 year old boy, Eric,  for the past five years. We've met for an evening nearly weekly over this time. It was bittersweet getting together with him tonight-I am not ready to tell him about my condition until I have a plan.

Eric comes from a family of six that lives in a two bedroom apartment. His sisters and brother probably will not graduate high school, and his mom and dad work 10 hour days for minimum wages.  Eric is exceptional- he is smart )would like to get a college degree), is very caring,  but reserved.  I am heartbroken that Eric may experience losing a stable long time friend/mentor, especially as he is coming of age, and seeks guidance.

Would you know of someone, a male, that would be willing to take over my role as his mentor? Ideally the segue would be over two months.

I'm in touch with Big Bros/Big Sis on this,  as well as grief counseling. As I mentioned, Eric will not been made aware of my condition, until we agree on a plan.

Thanks for your consideration, 

Steve 

Two Steps Forward One Step Backwards

Made more calls to enquire about Clinical Trials, further afield than Portland-learning it can take days for a return call. Then this afternoon I met some people to make initial connections between them in the hopes that it could lead to them working together to address a need in the LGBT community-that was very satisfying. Also learned this afternoon that we pretty much have to stay in network and forego some of the most attractive treatment options if we don't want to acrue unaffordable debt - that was our step back. We ended our day by celebrating our anniversary with a nice dessert, exchanged cards and wove a ring of fresh flowers -the ring symbolizes everlasting love. We put a vase of white tulips our friends gave us (they shared that tulips continue to grow even after they are cut) in the ring of Baby's Breath-it looks absolutely stunning! 

See MyHorizonIsShowing.blogspot.com for Steve's Insights and Inspirations Now That...

... he sees his horizon ahead, the world looks different.

The blog can be found here...MyHorizonIsShowing.blogspot.com

Shifting Gears - Wonderful Moments This Weekend

Well with most medical offices closed over the weekend, actively pursuing further treatments options is fruitless, so we turned our attention to getting out house in order (sorting and downsizing) and paperwork organized.  It feels a bit like bailing a rowboat with a teacup.

Once we did all we could on Saturday, we had a wonderful, memorable evening with a couple of good friends at our place, having dinner on the porch and playing a game late into the night (Dixie: "Gee! How did I win again? I must be lucky").

Then today, Dixie and I celebrated our 19th anniversary one day early (its actually on the 11th), by going to a gemologist and replacing a sapphire in Dixie's wedding ring that she'd lost. The sapphire is the color of Dixie's eyes - light blue and sparkly. The occasion made for a moment we'll both remember!

The trials trials

Well we've spent considerable time researching and seeking out the best clinical trials, and have a few further explorations underway. I'll be having a consultation with Dr Picozzi at Virginia Mason this Friday. Also have inquiries in with a couple other institutions. Time to turn to getting other things in order this weekend, and enjoying time together :-)

Suggestions on Contacting Us

Hello, we realized some of you are wondering whether to contact us and if so how.

If we haven't heard from you or you'd like to contact us for more than an update (that's what this blog is for) please email us. Since we are busy getting ducks in a row and putting aside moments to enjoy. we'd appreciate your understanding we won't always get back to you immediately. Thank you!

Steve is generally in good health...

...otherwise. No pain or weakness.

Thanks for asking. 

Steve

The Challenge is Underway

We visited the oncologist and the circumstantial evidence and biopsy line up - Steve has advanced (metastasized; Stage IV)) pancreatic cancer. We've been pretty much bracing for this diagnosis, both emotionally and logically so it's like an aftershock. Now the race is on to find a clinical trial and be one the insurance company will agree to pay for (that could be the REAL challenge) ASAP.

1st oncological consult this Wednesday

...near the end of the day. Finally, more clarity - we are bracing ourselves for the worst, yet hoping for the best. 

We'll get a second opinion ASAP before Steve starts treatment. 

Please cross your fingers, say a prayer, etc. for us!

Unexpected Turn

Dear Family and Friends,

Steve has not been feeling well over the past couple weeks and developed jaundice.  A visit to the doctor ruled out hepatitis so the doctor ordered an ultrasound.  That showed an obstruction of his bile duct by a suspicious mass. On Thursday afternoon, we went to Emergency.  They did a CT scan and confirmed the bile duct blockage and a mass.  A blocked bile duct is a bad thing. On Friday, Steve had an emergency endoscopic  procedure to place a stent into the bile duct and a “brush” biopsy was done.  The bile duct stent placement was successful and the bile is now draining normally. That was the emergency.  However, of more concern now is that the doctors are thinking Steve probably has pancreatic cancer but we don’t have the biopsy results yet.   Meanwhile, Steve is feeling OK.

This is a serious emotional rollercoaster so forgive us for the mass email. We are fearing what’s ahead and  we’ve decided to share the facts we have now, rather than delay or “couch” them. We will update you as we learn more. 

Even more than your sympathy, we’d welcome your help and support as we travel down this difficult path. 

With love,

Dixie and Steve

April 19, 2015 at a friends' son's Eagle Scout Award Ceremony