Sicilian Pizza & Yoga

Hi, Steve here. 

I had a dream last night that I was out late at night with friends and we stopped by some street fair for a late snack. I had a real craving for a piece of Sicilian pizza like I've had in Boston.  And sure enough, we found a busy popular place selling fresh hot squares of the pizza. Now the only way I could buy the pizza was if my healthcare provider approved my purchase. So here I am, pacing in front of the steamy glass case filled with hot pizza, phone to my ear, on hold waiting for the next agent! When I do finally get through, they want to know the official registered. name of the joint.  "Fresh Hot Pizza" was not listed, and they needed the name of the clerk to ensure the facility and personnel were "in network". Aargh! It's just a piece of pizza. 

I tried yoga for the first time ever today. It was set up to be gentle and focus on breath, energy flow and optimism - ideal for retreating and recuperating! I loved it! It helped me feel my body as a single integrated whole again, the benefits of cleansing itself of toxins.  And yes, despite the 'dis-ease', the rest of my body can be healthy and fit. This experience is yet another life's lesson and experience I've been bestowed that money cannot buy. Thank you friends :-)

Good Day

Steve had a pretty good day today; he's at 3/4 full charge, but a circulatory issue is slowly, painfully working it's way out of his lower left leg - he needs to elevate it or keep walking, otherwise standstill it cramps up. But this is working its way out and is a small price to pay.

Steve went out with or visited at our home today with a number of friends  that brought snacks and meals, discussed plans or shared stories about where some of the work he has contributed to has evolved and/or been adopted. 

All in all a most gratifying day!

Hang Time

Vancouver WA 

Smote with Revival

Well Steve had another infusion yesterday, with reduced chemo ingredients. The infusion went smoothly, though the hours and night after it was really rough for Steve, he felt he was smote by Thor's hammer. Steve is feeling much better, almost fresh. He's optimistic he'll be more functional in the following days than the first chemo session.

Yes! Back in the Fight! Round Two!

Everyone we've met at the cancer clinic has been surprised and delighted how well and quickly I bounced back. My blood levels have returned to normal. So since I'm game, we are ready to do round 2 of clinical trial with lower doses of the standard chemo cocktails that triggered my adverse reaction. We are so happy to have this option and to make this decision. So, here we go again :-)

We Find Out Steve's Options Today

Wish us luck!

Thank You for the Welcome Home!

One of our valued "dog care team" left this note for us.  Thank you Team Jude and Breeze for being so responsive and flexible! You are awesome. This team is no less valuable than the others of you that have helped us with meals, lodging,  meals, well wishes, shuttles, etc.

Dixie got Steve home comfortably just after noon.  She tended the yard while keeping an eye on him as he dozed for a good chunk of the afternoon on the back porch. After that,  he interspersed small periods of activity with rest. He is happy that his sense of taste and appetite are returning. 

It's nice to be home for a couple days before heading back up to Virginia Mason Hospital for a day trip on Thursday ("Gilligan's Island" lyric "for a three hour tour" playing in background).

Cleared for PDX

Docs tested Steve's blood levels this afternoon which are at the lower end of acceptable but rising. So they said it was ok to return to Portland (PDX).  We are resting and recuperating in Seattle tonight in a nice hotel and will drive home tomorrow. Back to Seattle Thursday for an appointment with the oncologist. 

Steve has an appetite again and resting with little discomfort. 

Night on the town involved room service.

Past Clear & Present Danger

Well the hospital released Steve today provided he stays within 1/2 hrs of it. The clear and present danger is past. Steve is to self monitor. He is staying at his brother, Gregg and Chari's place, (again -thank you!). 

Steve just noticed he still has his DNR wristband on. If it were not him and some healthy teen, it'd be gruesomely cool to wear it around. 

Getting the Latest Updates

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Hope these tips are helpful. As you can see I'm feeling a bit more energetic today. Thanks

I wonder if I can eat a pizza

Quick summary: after receiving blood transfusions all night, Steve's blood components appear to be stabilizing and his platelet count is up enough for the doctors to feel his bleeding risk is much reduced. He was bleeding somewhere in the GI tract. 

It's kind of like fix-a -flat tire spray. Spray some platelets around, give Steve a spin, then see if he still leaks. So far the leaks seemed plugged.

Right now, he's feeling better: more alert, more energy, better color, better appetite.  We all are hoping all of his blood numbers stay stable and in the safe range. 

The immediate plan:  Steve will remain in the hospital today and tonight. If he is not bleeding and his numbers are good, he may be discharged tomorrow.  However, he will stay in Seattle until early next week and have regular blood tests done to check the levels.

Turn of events- rallying point

This is an occasion I'd appreciate you  rallying on my behalf, bringing your wishes, prayers and positive thought to bear on one thing. This was to be a routine visit to Seattle for my second chemo session. Instead, I've developed a life threatening condition called Disseminated Intravascular Coagulation (DIC), which is a serious blood disorder.  My blood is low on platelets that are not being replaced.  The DIC may be due to cancer or the chemo or both. I may rebound from stopping chemo. I need to rebound ASAP. I'll be in the hospital at Virginia Mason Medical Center in Seattle until this condition is stabilized. 

Before, my focus was on quality of life, now it's on life. Be it shorter or longer,  I want to thank each of you for lessons each of have  bestowed on me. 

The Long Week

The chemo treatment last week put Steve out of action throughout the weekend. On Monday, he rested some more while waiting for the bile duct replacement procedure scheduled for Tuesday. The procedure  was done at a local hospital in Vancouver and went well and we learned how different hospitals' care can be. We are spoiled by the attentive, informative, team based approach used at Virginia Mason in Seattle.  

Steve felt better on Tuesday afternoon but Wednesday turned out to be another tough day. Then Thursday, we were off to VM in Seattle for another chemo treatment. However, his blood labs showed a dangerously low platelet count. This is one of the vital clotting factors in the blood. So no chemo this week. In addition, his bilirubin levels are high which caused his doctor to think something might be wrong with the new bile duct stent. A CT scan was done. It showed the stent is OK but that the cancer is growing quite fast. His oncologist said it's good that we are pursuing it with an aggressive treatment. 

To add to an already fun day, Steve needed an emergency transfusion of platelets. He was admitted to the hospital for that and an overnight stay. We thought we would be home by bedtime. But going home will wait until tomorrow. 

Finding a New Normal

We woke up this morning and finally felt congruent with the view out our bedroom door:   A view of the bright morning light filtering through the green canopy and  air filled with floral notes and singing birds greeted us. This is in contrast to the prior two similarly superb mornings that were the opposite of how Steve felt after his first chemo treatment. 

We are beginning to get a sense of what a 'new normal' life will be like. Steve is usually quite like the energizer bunny but the chemo has sucked his batteries for several days. Managing side effects like gastric upset  and flu like malaise will be his focus those first few days. Rest, nap, then rest some more then try to eat enough. 

So Steve's typical week will be:  infusion day and day 2; pretty worthless planning to get anything done; Day 3 - light work, moderate focus; Day 4, 5 & 6 - working okay, focus returns. Repeat for 3 weeks, 4th week off. Rinse and repeat.

Yet one more surgical procedure is scheduled for tomorrow to replace a plastic stent in the bile duct with a permanent metal one. It's done as an outpatient endoscopic procedure, through the esophagus. Will be good to get it behind us. 

Experience with First Infusion

Well a couple hours after the infusion Steve began feeling the effects of the chemo. It made for a rough night which in turn made for a day full of dozing and general malaise. Dixie is amazing - she can be sharp and on point with her questions, and power on through on things in ways Steve never appreciated. 

The good news is that because the initial trials went so well that Steve got in on an extension of the trials where it's more than likely he got the special cocktail. 

First Infusion Underway

As you can see it's a perfectly safe, organic and nontoxic solution...

My reaction over the next couple days will be .... interesting.

Here Goes: Our Hopes & Prayers

Had my "power port" put in today - it even came with an owners manual. It's a mixed blessing - I won't have to be poked weekly for chemo for IVs and have angry irritated veins, but it is disturbing being bionic now. 

Ohhhh! So warmmmm.

Now on taking the plunge into the unknown - chemotherapy.  Simply put, what kind and how severely will Steve be affected by the side effects of chemotherapy? This will determine the quality of our life. And how effective is the therapy-this will determine Steve's longevity.

We hope that:

. Steve will be in the 50% of subjects that receives the new experimental drug.

. The therapy and Steve's approach is effective, even curing him (which happens, but rarely)

. Steve will have minimum adverse side effects from the chemotherapy.

Jizu is in a "teaching pose", and Steve and Dixie still has much to learn.

Your Priceless Gift - Thank You

Hi All,

Before we move from this chapter in our journey onto the next, we want to thank all of you that have given us well wishes, thoughts and prayers, been with us, gathered friends, helped us by dog sitting, cooking meals, or provided lodging, given us little things that make a big difference, or offered to us your help going forward. Your "gifts" have given us time to enjoy friends and our loved ones *now -  in the moment*. Holding at bay for us the myriad of chores that lie ahead as we downsize and bring simpler order to our life. 

 Yours are the gift of good times - something money cannot buy. We thank you for this most precious of gifts.

 

Sunshine on Our Shoulders, The Wind at Our Back

Dixie and I went to Cannon Beach to enjoy ourselves together and with the dogs, in advance of my chemotherapy this Friday. 

It was sunny, warm and windy at Indian Beach - Ignore my flapping hair in this picture (no need to ignore it soon anyways ;-) The views were spectacular!

We had a nice lunch in Cannon Beach, then did some shopping. Dixie was immediately drawn to this statue by his warm, friendly and serene smile. I was immediately drawn to him too.

Before we bought the statue we learned this is Jizo Bodhisattva, one of the most beloved and revered highly enlightened beings in Buddhism. Jizo is the embodiment of the Bodhisattva Vow, the aspiration to save all beings from suffering. 

After shopping, we took the dogs out to enjoy the beach with us a second time; this time at Tolovana Beach. Breeze had to investigate this very rarely seen glass box. 

We've got some wonderfully simple but vivid memories to carry Dixie and me through rough spots ahead...with Jizo's help.

Welcome Weekend Retreat

I had a weekend away, out of town with  friends that really "get" me. Dixie did some things with her friend while I was out of town. It gave both Dixie and me needed mental and emotional breaks from thinking about the road ahead. Though I t's been a bit rough today, settling back into what lies ahead in the coming week after such a wonderful weekend.

Breeze Hunting Bunnies