Hanging in there

HLosing a stomach at the end of November makes for a semi-jealous me as Christmas arrives and I'm still on a mostly liquid diet, and there are all these foods being advertised. Timing ya'll... It's all about timing. Of course taking care of a ring of bleeding tumors in the stomach is more important, so I know it's the right choice, as tough as it is.

Ki has been working hard to make shakes with high calorie and low sugar counts that actually are drinkable. Most start with a base of Boost or Ensure (both shakes and faux juice) and then bump up the calories so I can hit at least 2,350 calories to not keep dropping lbs. With a small "pouch" in place of the stomach it can't handle too much. So the 3 to 4 shakes need to be 500 plus calories at least. 

My surgeon Dr Reed said I could eat steak and such as long as I chewed the heck out of it before swallowing...needless to say I'm holding off on food that solid for a bit. Soups that are mostly smooth like tomato (and its variants) are good. We increase calories with some heavy cream if we're low on calories as well.  Too much sugar causes dumping syndrome on the potty, so we have to watch the sugar amount as passing too much reduces nutrition etc.

I have had 2 of my favorite slushies since, but have to drink half of the 12oz and put the rest in the fridge for later to keep sugar within range, but boy are they good (similar to slush puppy, but labeled Romano's Italian Slushie.) At age 46 it cracks me up how much I love to drink these, but hey, part lime and watermelon is great!

My first foray into soft foods just may be via chef boyaredee options such as the beefaroni and mini raviolis with meatballs so I can chew them up well easily before swallowing. These (and others) have over 500 calories a can when you look at the number of servings. I think these should be easy to start with, and then move onto trying things like Lasagna (similar digestible profiles I imagine.) 

My weight dropped a lot in the hospital as I had days with no eating, and just bags of fluid and lipids. I've increased just a bit, but I'm at 185 as of my Keytruda infusion yesterday. For me, I need to get over  215 and for that I'll be drinking and eating what I can.

I wish all who read a very merry Christmas and Happy Holidays!  Here's our lovely red Christmas chair.

Hospitals vs. Stomachs

So the time has come for a more doable drastic measure to control my blood issues.

Last week, I had a new trip to the Good Sam ER for a blood level going down (was around 6.8,) which was making me feel tired and goofy eyed... So Ki and I decided to preempt another ride in the ambulance and checked into the ER.

After a consultation with a wide variety of specialists, we decided to remove my stomach which had quite a few unresectable bleeding tumors. Rather than keep bleeding, this felt like the most advantageous way to extend my time. While performing the surgery, my primary surgeon discovered a few undiscovered tumors in the upper intestines, and as we'd discussed prior to the surgery, he removed what he found.

I've now been recovering in the hospital since Tuesday 11/24. It's been quite painful, and my diet will be adjusted multiple times in the coming months. Besides smaller and more frequent meals. This morning I'm being a test monkey with a powder you mix with a variety of liquids. It's called Juvens and is a bit Tang-like, and it so far rates 4 out of 5, it's best mixed well with cold water.

The adjustment of diet plus healing will be a real interesting period for me. At least I'm not having serious issues in my 3 x daily walks and using the breathing tools, rather both are improving. I'll might be discharged on Friday, but more likely on Monday.

What I'm Thankful For

I'm thankful for the option to have a holiday centered around the 

Thanks beast, family, and great friends

I'm thankful for My wonferful mother and (although deceased) my father

I'm thankful for My terrific brother and sister

I'm thankful for lots of sweet and savory options my djanky taste buds can choose from

I'm thankful for the Good Samaritan Hospital ER for getting seen quickly this morning (again)

I'm thankful for the 2 bags of blood I was transfused with today

I'm thankful for Dr Chun doing an effective endoscopy and cauterizing 3 new bleeders in my stomach

I'm thankful for the luck to land the Shropshire suite again (single occupant room I've had before during hospital stays)

I'm thankful for the very nice and capable nursing staff taking care of me 

I'm thankful for my oncologist Dr Blanchette and will miss her when she moves on sometime in January

I'm thankful for still being able to put up a fight to live

I'm thankful for Keytruda being approved in September and being authorized for it's use treatment that month

I'm thankful for both insurance and Medicare

But most of all, I'm enormously thankful for my partner turned fiancé Ki Kurtz! I'm very lucky.

This morning I had to come in as I had a fairly dark movement (meaning GI track bleeding) and needed blood again.

3rd Keytruda Infusion

I'm rocking the 3rd Keytruda infusion from Tuesday, and using the portacath is totes the way vs. endless IV's. So far no side effects such as 20% chance of stuff (there's a LOT of options to choose with Keytruda.)

Also got 2 more bags of blood transfused, but Dr Blanchette felt strongly it needed to happen on Wednesday, so the only available location was in the Good Sam hospital in Albany, which is about 20 minutes drive from Corvallis. I've had blood transfused there once back in August, and they remembered me, which I thought was cool and a bit of a surprise.

Lately when I'm in these treatments everyone seems amazed at my height. I tell them 6'3" unless I'm retaining water and then it's 6'4", you'd think us tall guys never get ill? But watch out if we stumble (I haven't fallen in some time thank goodness.)

On a great positive note, I asked Ki if he wanted to get married and after wet eyes on both sides, he said yes! 

We're planning for May, and hope either the 23rd or 30th works at a very nice venue that's in-between Corvallis and Eugene. We're not slumming it, but likely won't get crazy big with it either. Lots and lots of details to decide. We have family and friends to plan for, but still need to finish his, mine and our shared lists. Some good friends and family have offerrered to help too!

The only blip is Ki wasn't too aggreeable on putting Musuicians Friend/Guitar Center on the gift registry for some reason ;)

Oh and we found these lovely rings with titanium and exotic woods.

Lovely rosewood for Ki

Zebra wood for mine

We're still in the beginning planning phase, but it's super exciting!

First Portacath Use

My blood levels slipped to 7 this week (tested on Tues.) My hem/oncologist had the hospital transfuse 2 bags of good old O positive blood today.

This gave me the first opportunity use of my portacath. It went fine, and now I'm taking a nap.

Eventually, I'll know most of the nursing staff at this rate.

it's certainly better to know about this ahead of time than before I have to rush into the ER.

I'm getting blood checked each week, and until we see reduction in tumors (hopefully from the current cancer treatment/Keytruda.) I'll likely need some transfusions on a continuing basis, but this seems better than having my stomach removed ...

On the upside, I had a nice room.

A Very Simple Procedure I Think?

Got my portacath in place (that's nicer sounding than "installed") this morning. The operation/procedure started at 7:30 am and I was awake roughly 9:00 am.  Not a long time, and as I was able to do the potty thing, I was discharged. Hence it was a quick visit to the hospital.

It's 1:45 pm and the procedure site is a bit sore, but that's what the prescription for a week or so of constipation is for. Hopefully the nurse was on target when he said it should mellow out after a few days (too bad I couldn't have what they gave me to numb that area during the install, but that's likely too close to Michael Jackson territory?)

I'll update if it doesn't mellow out. Or if not before than after it's first use which may be a blood check next week.

I'd post a new pic of Cali the former kitty, but she's grown so much, I may need a fisheye ;)

Portacatholics

Tomorrow I'm getting a portacath installed. Since I've had lots of IV's as of late, both arms are pretty much over it... 

How weird to say "installed" for something to do with your body. Sounds like getting air conditioning finally in you family's 1972 Datsun 610 (my official hand me down car in HS.)

I'll update after the procedure, which should be pretty straightforward. The concept of easy access to my veins does freak me out a bit, but I know a lot of folks who've needed one, and it will cut down on wondering which veins are in a giving mood.

This will make any blood draw, transfusion or medicine infusion pretty easy. 

Back in the Good Sam ER

I had another bleed issue that landed me back in the hospital for 3 days. 

On Friday morning we were going to take liz to the Portland airport and I was turning white and sweating after a fairly dark and unpleasant movement. I must have pushed out mostly digested blood, as the impact on me was quick.

Liz changed her flight to Sunday, as we rushed to the ER and my blood level was back down to 6.8 again. I was admitted to the hospital, and over Sat/Sun had 4 bags of blood transfused. On Saturday, I had another Endoscopy with the very nice and competent Gastrosurgeon Dr Chun. She found and cauterized the new bleeder, and so far my blood has held steady. I was discharged Monday morning with blood levels around 9.5.

I was lucky when being assigned a room, as the nurse remembered me and I got a nice single unit. I think I must have diamond status or something now...it pays to be friendly with your nurses, plus it's better than being a jerk.

Today I received my 2nd infusion of Keytruda, and had another blood test, and the result was 9.8, which was quite uplifting. Diamond status must count for something I suppose?

We've decided I need to have a portacath installed to facilitate future infusions, transfusions and blood draws, as my arms are dang tired of all the needles. Also we're trying to get set up with home health visits to check blood a couple of times a week. My hope is the last procedure will keep me plugged for a while.

My reflection while being infused today:

Tuesday Bloody Tuesday

On Monday, Liz (my older sister who is visiting,) and I went in to the Corvallis Clinic for this week's blood check, and found my hemoglobin level was back down to 6.8... So I had to go to the short stay part of the hospital (Good Sam.)yesterday, for 3 more bags of blood to be transfused. Nice way to spend a Tuesday, but better than the alternative for certain.

I'm not 100% certain, but I think now I may know all the spots for blood transfusion at the hospital, but don't hold me to it, as this spot was new to me (this was the quickest option where they could do a 3-bag transfusion.)

Nice and solid nursing staff. But it wouldn't be the Dogpatch without some sort of issue. Monday we had to drive back to the clinic for a total of 3 times, (hgb level, blood type which had been labeled with a smudged letter and was in turn not accepted by the hospital which required another blood type draw. It's about 20 minutes there and we had to go back and forth from home as we we're contacted as we arrived home each time. 

They check for antibodies and type if you need blood and haven't had that done within 3 days of appt. It's for the potential changing of antibodies vs type which doesn't change. The 3-day window seemed odd to me until this detail was shared.

So we're hanging at home now, but I'm sure happy to catch this early enough to not need an overnight stay again (also better than the alternative.)

I'll likely need an occasional transfusion but for now I'm felling decently. And there almost was a nurse fight outside of my room (the RNA slid the door shut so I can't report the drama.) Frankly I'd rather not see that anyway.

Hope all have a fun Halloween, and I think everyone who reads this should take costume inspiration from our girls!

Gonna Get a Blood Bag Punch Card

Yesterday, towards the end of my latest top off/blood transfusion, I looked right at the nurse and asked if they had blood punch cards. It'd be after 10 bags of blood, get 2 free! She made no offer to look into it, but at least she laughed.

My blood pressure was regularly taken and was low at first due to the infusion of some liquid Benadril, then it was up to 110, then back to 99, then over 100 (this is the top number of my bp, usually you'd see 110/61, although the top number is more what we tend to notice I think.) it was solid when I left at least.

Feeling not much in terms of side-effects from the Keytruda. Hoping it impacts my cacer junk.

And Here Comes Keytruda

I'm currently receiving my first infusion of Keytruda. We have lots of hope for this to help. It has a very similar side effect likelihood as Yervoy. But it works on other immune receptors.

Cross all that you can for me with this. I have a feeling I'll be getting this every 3 weeks for a while.

Blood Fill up Meets Flu Shot Dream Weirdness

I just woke while having the strangest lucid dreams tonight, and had to share the last. it must mean something, so if you know how to interpret strange yet powerful dreams have fun.

Part one had me still working at MF but also with my current cancer, and close to seeing the company move to Sothern Cal. And I was heading out for the night. This detail meant I had just a couple of months to work there. (This didn't feel fatalistic, yet more transitional.)

Then I climb into my old 1972 family-hand-me-down Datsun 610 to drive home. I had just received this fondly remembered relic from my mother as I needed a car apparently, and in the dream she still had it around. I was checking off all the fixes I recalled it needed before last driving it back in 1987 (it wasn't in the best shape.)

And as dreams go, after a while I was stuck mid-Medford (dream version, so lots of non-real details. I have had lucid dreams of many of the places I've lived. All have been consistently different from reality as I've revisited each from time to time while actively participating in a dream.)

As I reached a certain point, the way was blocked from driving further. I transitioned instantly to wearing old roller skates (sparkly blue size 13's that in the dream were from my mid-teens, yet I never had these.) Upon having these skates the car was no longer there, and I had to skate clandestinely through a large factory to proceed, barely making it out before being nabbed. Weird eh?

Then I wound up not knowing which way was south, and found myself skating through my dream version of East Salt Lake City, and stumbled across a version of the Rogue Valley's bike path mixed with the cool brick architecture of that part of Utah.

Then through another factory, where everyone was happy and many seemed to know who I was. My journey was stopped by non other than Gene Jolly who gave me a wonderful greeting and wanted to know when I'd start working for him there. I had some odd reason about needing my insurance for 2 more mos. and then I'd be available.

It was a super nice visit, and as I departed I looked at my skates and woke up. I remember the vibe of this dream fondly.

This interesting and memorable dream I can only attribute to getting 2 units of blood on Wednesday (this does give me a different feeling, and yesterday I had a flu shot which is kind of sore.) It seems possible the two influenced my dreaming, but who knows.

As I now seem slow to get back to sleep, I thought I'd share this good zany stuff, since things have been pretty heavy as of late. I've always had the occasional lucid dream (where I actively participate.) but this felt more intense. Maybe due to the skating?

Thanks to all who participated and we'll negotiate future appearances.

Tour Complete

I just got home after getting two bags of blood transfused at the Good Samaritan Ambulatory 

Transfusion group. 

So now I'm feeling a bit better, and this completes my tour of the local options for transfusion. Going on tour can be pretty tiring. Particularly when you have to walk ;) I think ambulatory simply implies outpatient. 

And they do some chemo there, but I'm not certain if it's based on room availability or just simpler types of medication, so disregard that bit from the previous post, as it's slanderously inaccurate!

My appt was very timely, as my left arm and hand went numb just as the IV was inserted, (unrelated) but after saliene and the blood started it became normal. I kept saying to myself "let's get going, so I don't slip into needing to go to the ER and spend a few days in the hospital again." Fortunately I saw a healthy increase in blood pressure after 20 minutes (phew!)

On the way home we stopped at Safeway and stocked up on juices as I'd depleted the previous stash. Also grabbed some trail mixes to snack on as I'm almost out of the eating time restrictive Sucralfate (6 hrs between pills with 4 per day, 2hrs prior an 1hr after with no food, so it was 5am, 11am, 5pm, then 10-11pm.

 It's been an effective diet plan as I'm just under 214lbs... Kidding of course. I need to put some lbs back on for future treatments.

My hope is to have a positive report after starting Keytruda this next week. Crossing everything here!

Need more...

My blood work today (after 1 1/2 weeks) dropped from 9.5 to 7.5. What a drag! 

I'm slated to get 2 bags tomorrow at Good Sam's outpatient transfusion group (not sure what they do but it's nothing to do with cancer, and it's pretty tough to get a quick appt. They also required a blood type, which I just zipped in to have to ensure I'd be able to have no delays tomorrow.) The flobatomist said she could see 5 blood types taken recently (between the hospital and the clinic, but we aggreed to just do it in case there was a requirement for there dept. to check it to be sure.

I've been pretty tired and coughing a bit. Since it's not caused anything similar to before, Dr Blanchette thinks it's a slow ooze, and we should get solid with this for the time being.

The great (hopefully) news, is I'm not only approved for the new drug Keytruda/PD-1 and they just got it for my appt on 9/30. She thinks this could act quickly enough to help impact the tumors likely causing blood leaking/oozing.

I'm not feeling overly funny right now, but I'll do my best on the next update. At least I had zero issue driving myself to get the blood type done.

Steady as She Goes

This is a short update:

Aside from being a great song by "The Raconteurs," this title describes my daily blood check results from last week, so the cauterizations performed in my stomach appear to be working.

It's taken a bit of time to recover my diet, and I'm still working towards a more normal healthy intake. Recovery time really gets impacted by low calorie intake. This is somewhat inevitable when you have a restricted diet for multiple days.

My energy levels are climbing, but my naps seem deeper too. 

I'll update more soon.

Blood Steady, and First Infusion of New Round of Yervoy

So no drama today (thank you) and I was able to start the Yervoy today.

The only issue, I've been IV'd and tested sooooo much this last few weeks, it took a lot of attempts to get the infusion IV into a usable spot. No worries... I may love purples, greens and orange but I'm still tough ;)

Still doing a lighter diet, but like our former president, I have strategery (ummm how come that didn't get spell-checked? Please tell me it's not "literally" an accepted word! Presidential legacy I suppose.)

Sorry to sidetrack, but my strategy is to slowly and steadily reintroduce a wider healthy diet. I lost 5 lbs on the hospital clear diet (at 215lbs now) and I really should get some more calories for a future buffer (but not back to where I was at the beginning of this at 280.)

And if you're healthy and want to know this awesome weight loss plan... Just ask, or look up hospital clear diets. Tomato soup (or tomater if you're a Brit on So You Think You Can Dance - 

Natasher was better than the last girls I thought!) Of course I may have been biased as Ki taught her gymnastics when he was teaching in the Provo/Orem area dance schools while he was at BYU.

Thou Shall Not Pass Filter Installed

Finally the dark and fiery flowing is blooming to safety.

Okay, bad prose, but I'm home as of yesterday late morning. My blood levels appear to be holding steady, and I feel much better.

It's crazy to have this mean cancer and then to have an oddly related-in-a-Kentucky-style manner illness almost take me out! My blood loss issue looks to be in control now. Hopefully the added iron they infused will help push my bod to produce more blood.

As my diet was limited for 3 days to a clear liquid and clear solid guide (apple juice, jello, sherbert-huh? and such,) I'm enjoying my slow return to regular chow. Also since the anticoagulants are done, (replaced with a filter placed between my legs and torso, that catches clots,) I don't have to avoid foods as I did with warfarin. So I'm reintroducing some now and others as soon as I think my tummy is ready.

I'm walking, but between the hospital stay and the reason for it, I'm a bit low on energy. 

Tomorrow I'll have the first infusion of a new round of Yervoy, which is just great. It didn't cure my cancer, but it did stop certain growth for a good time both rounds. After this, if needed, we're looking at the new drug PD-1 (being FDA fast tracked) as a probability. You need to have failed (not 100% cured) Yervoy to qualify for this consideration. This link has the information:

http://www.medicalnewstoday.com/articles/277977.php

Not Yet with Yervoy

I wound up back in the ER after having more bleeding. It's likely the same problem as before, so we did another endoscopy, but this time the surgeon was looking for a more specific bleed in my stomach. My blood levels dropped below 6 this time, which is dang low.

Ki came home at noon to get me to an oncology appt. for an iron infusion (the Yervoy was scheduled, but it wasn't delivered here yet, so we decided to get more iron and wait for the Yervoy to come, which should be soon.

When he arrived I was feeling like I couldn't make the appt, as I was dizzy, really couldn't walk much, and starting having speech issues, and my right hand and forearm were numb for about 30 mins. He called an ambulance and they took me in. It was 3 firemen, and the lead joked about me hopefully enjoying being cared for by 3 "hot" firemen - this was pretty funny. Mainly cause only one was handsome, so I smiled.

Once we arrived the ER doc sent me to another head MRI as my symptoms seemed like a tiny stroke, but the results were negative for it. Very glad for that result.

I had a tumor/ulcer in my stomach which the surgeon was able to cauterize (along with 2 tiny ones.) this seems drastic, but it's likely the reason for my blood issues. Overall, I'm really hoping this addresses the issue.

We stopped all anticoagulants for now, since they're likely the cause. What a less than great few weeks, but having a probable cause and fix makes me feel pretty upbeat!

Going Back for More

So I saw my oncologist today. Now I'm getting additional iron infused (Venofer) and tomorrow I'm going into the Good Sam in Albany for 1 more blood infusion (the main hospital here in Corvallis is full tomorrow.)

My blood is at 8.8 now, and it was 9.6 after the emergency last week. It's not a crisis, but if we can get it stable, hopefully my bone marrow can produce normal amounts.

Good news, I've been approved and scheduled for more Yervoy. I'll start next Wednesday and stopping the Gleevec during that time. The Doc is concerned there may be issues with them together.

I'm glad to be getting blood and Yervoy.

Still Kicking

This was such a tough handful of days, but thanks to Ki and the staff here at Good Samaritan I'm still alive (that sounds dramatic, but I'm pretty lucky here.)

I think Good Sam should have a punch card - buy 9 bags of blood infusions get the 10th free. 

Today looks likely for me to be discharged from the hospital, and I'm looking forward to getting home. And another bit, don't toss the LASIX pill if you've been infused with a large amount of fluids. It's not fun, but if I'd have known what to expect, while I wouldn't have enjoyed urinating every 15 minutes, or more, at least it wouldn't have freaked me out.

Ki explained that my kidneys must have been holding a LOT of liquid and without vacating it I could have been in real trouble again (not enough vs. too much bodily fluids.)

The lovely nurse Allison (day Allison vs. night Alison who was also wonderful along with night Michael and night Michelle,) is bringing the discharge papers shortly. So I'm heading home very soon!

Hot Blooded

Okay, I'm coming to you from the Good Samaritan Hospital in Corvallis, and this might be a doozy...

First - I'm 46 and have been somewhat anemic all my life. If you read the last post you'll know why I'm here.

It's now 4:15 am and ... I must have made someone here upset as they gave me a LASIX pill last night. If you're EVER given one of these, palm it and toss once the health worker leaves, well maybe not (YES REALLY!)

I've had to pee in something hospitals call a "urinal" all night long (it's been 10-15 times, all while sitting on the edge of the bed, and the dang thing keeps getting about 1/4 or more full EACH TIME (thanks LASIX ...).

It's not much fun to almost (or actually) urinate on the floor a bit (at least they have wet wipes. I am astounded at how much pee I must have stored up, I mean it's up and down so much the RN's and CMA's don't bother with my bed alarm (when you get out of bed without them there it dings, if they're there they turn it off.)

I've also had some freaky dreams here in the ward, and I think it's a combination of having more blood than I'm used in my body to, and all of the many differently colored view screens. I woke up all discombobulated around 1 am (hard to sleep with blood and Saline mostly non-stop flowing to my left arm and the are-you-still-alive-monitor stickies by 3M and cables on my right. With the lights popping around I had these crazy light box performances visible while my eyes were closed.

Oh and these "gowns..." No sequins?

In the ER again

So Ki and I had to go to a biometric insurance check yesterday (basic measurements & light blood test), and I passed out and chucked "coffee" (Dr. speak for dark blood) and now I've had an endoscopy, and am off warfarin (they gave me vitamin K to reverse the Anticoagulation as there is danger of bleeding out, which would be bad.)

I stopped breathing, and my heart stopped for a bit, but BING I mostly came back. Ki said I was taking my clothes off, and when he covered me with a sheet I THREW it off! Lol

So far they've given me 4 bags of blood (the ER doc switched me to irradiated blood on the 3rd and 4th, and now my oncologist is trying to get me 2 regular bags as I would benefit (my blood count was 6.1 and median for males is 14!) this explains my fatigue, dizzyness etc. they're out of nuclear blood, so Dr Blanchete is trying to reach the prescribing doc to get it changed.

I'm feeling quite better now, but I do want the MegaGulp dose (6 bags).This is one of my fave pics with Ki. 

MRI and The Monkey

I just heard the results of last Thursday's head MRI.

The remaining junk in my brain has actually reduced, and that's pretty great news! I'll get more info next week when Ki and I see Dr Blanchete.

We're not 100% sure why I'm having some eye flickering, energy issues nor balance weirdness, but I can fix that I think. It may be the carousel of medications I've been switching around as of late:

   Amoxicillin and Clar-blah blah-micin for the H Phylori gut stuff (finished these antibiotics as of last Wednesday)

   Nexium and Pyilosec (which didn't "get er done".)

   Protonix and Mylanta (my gut is getting a bit better, slowly.)

   Warfarin for anticoagulation amount going up and down in order to keep me from another pulminary embolism.

   And my generic-made in-Goa-shipped-from-Singapore-purchased-via-Canada Gleevec is still in the mix.

Now, I'm mainly hopeful to get another round of Yervoy, which Dr Blanchete was very supportive of when I asked about it. I mean it's not a real cancer year without four $70k infusions, right?

I'm still hoping for the sail boat effect, but hope to not need to use a hat for non-head cover. 

If you know me, this is one of my fave Bugs Bunny bits.

More Mixed Results and Improved Ingredients

Just had a call from Dr Wallen and here's where I'm at:

Bad - left lung and stomach shows slight growth in some of the mets.

Good - stomach also shows slight reduction in some of the mets.

I'll meet the replacement for Dr Wallen next week. For now Dr Wallen feels I should keep the same regimine. I'll see what Dr Blanchett (she's the replacement) thinks about some of the new combination treatments which pair Yervoy and a variety of medications (I've read about a handful of options,) which have shown success. I'll see if bare minimum we can get another Yervoy treatment approved.

Overall it's great knowing nothing is growing substantially, but I'm hoping we can pump up the treatment volume a bit.

I've had better energy levels lately, which is likely due to the new iron supplement prescription my primary care doctor (pcp) wrote for me during my H Pylhori, stomach acid-focused visit a couple of weeks back. We changed from my basic OTC iron pills, to these which are easier on the stomach. I've typically had borderline anemia and difficulty absorbing iron. It's not a thalecemia nor anemia, but somewhere between "nope...and yes you do."

I'll post updated news later next Wednesday's after meeting with Dr Blanchett.

In lighter news, I'm a Banana-Bread-Baking-Nut right now. I just made my fourth loaf in the past week. It might seem overboard (but if you recall, I was all into making pizza from scratch when I was in Talent, and as soon as the stomach acid is fully regular - soon- I'll make that again.)

The first banana bread was a food network recipe (by Mary Sue Milliken and Susan Feniger - the two hot tamales and proved to be a quite tasty classic style recipe) This loaf lasted almost 3 days.

       

The second had 2 bananas, 2 Hass avocados (the smaller sized avocado) and some dark choclate chips and butterscotch chips (this and the 2 loaves which folow are riffs based on the first.) I read a recipe for this, and the only difference was # of each fruit and no cinnamon which I decided needed to be part of the base ingredients going forward - because, yes this a new minor obsession, and things like fruit, preparation of fruit (fork mash, or blitz in 'magic' bullet blender.) Texture, moist and dense, and the bread didn't rise as much, I wonder if a bit more baking powder would help (listen to me...I didn't even know what baking powder was before making the first loaf, all I know is it's not baking soda, and I'm sticking to that assessment. You're welcome ;)

Note this Frankenstein Bread is almost green inside, and also almost gone :) it's more close to a dessert than classic nanner bread.

The third was regular plus dark choclate chips. I made this for a psych resident, who's made multiple meals for Ki and I, starting from sometime last year (radiation leftover-brain doesn't remember everything as well as prior to early 2013.)

Sadly, I didn't take a pic, so...Nothing to see here...move along... Imagine the first loaf with multiple dark choclate eyes on all sides, including the top view and bottom view. (So no pic ....move along y'all.)

The fourth was today, and its (again) the same base recipe (I'm going to go all in for the music references, the base/bass part, with the improv riff being 1 cup of chopped nanners, and 1 cup of cut strawberries. While the strawberries hits a new note, blitzing both fruit with cinnamon and a TB spoon of half and half in the 'magic' bullet blender gave a much finer and flyid consistency to this component. Hopefully this will infuse the nanaberry blend/mash into the entire loaf. it's untasted as of yet since it needs a few hours or a day to settle. It smells great. And if you're as curious to read as I am to taste it.

Every time I write nanner bread, I think of "So You Think You Can Dance's" host, Cat Deely. 

Instead of an "a" she and Nigel occasionally throw in "er" at end of words ending in a. Such as Jessicker vs Jessica, Tanisher vs. Tanisha and on and on. If you haven't heard this, just pay a bit more attention when Cat is saying names ending in an "a" sound. You're welcome ;)

Git-fiddles and the Latest News

First off, I had another CAT scan yesterday, and I'll expect the results when I meet the replacement oncologist for Dr Wallenberg (he's going to focus on research, so no patients) on the 12th. I'll admit I'm kind of anxious as it's been a while.

I'm feeling good for the most part. More energy in general. I've been on a 2 week regimen of antibiotics (amoxicillin and clarithromiacin sp?) due to the H Pilori junk being discovered in my stomach after some blood tests I had as I was having a lot of acid reflux. Apparently this bacteria? is estimated to be present in 70% of the world's population. Frankly I'm glad it's something fairly easy to address.

The drag is the Claithro (sounds like Clair and Jethro ;) might interact with the warfarin, and I've had to be tested 4 times in the last 2 weeks. The finger prick test to see if my blood's INR is affected (numbers for blood coagulation being more likely to clot, or to potentially be dangerous if it's not able to - as bleeding out is not a fun thing and is best avoided - for this advice, you're welcome.) Thank goodness these visits are roughly 15 minutes and the staff are super nice.

So I promised pics of the guitars, but between getting my Vintage 2008 powerhouse Mac Pro running, and swapping the music room and Ki's office room, the guitar closet is blocked with gear, boxes... So I thought I'd give a teaser shot of my favorite 2 axes instead. 

My awesome Gibson Les Paul Gt, and my custom built Warmoth Soloist. They both play great, sound great, and are just stunning to look at (I'm seeing slow progress on playing, but progress non-th-less!

The Warmoth has a top of rare wild maple, and the Les Paul has a shiny orange (similar to a gold top LP) with ghost flames.

Cat Hair is the newest Super Adhesive

Man it's just nuts how intensely cat hairs stay on your clothes! And just forget about trying to get all of it off a pair of sweats with a sticky roller.

I love our girls, but I'm a bit OCD when it comes to cat hair on my clothes in public, and with my attempt to use the Sam Fit gym always seems to feature me plucking the hairs from what I'm wearing while resting between the weak sets I'm able to do.

About the gym, I'm trying to go every other day for now, unless I'm too tired, and then I'll take 2 days off - but I think the movement will help me. I read an interesting advertisement article about keeping you gym time to an intense 30 or so minutes, rather than spending a long time exercising due to the build up of free radicals which is bad for us. 

I'm put off by the ad as it states at the beginning of a longish article that they're not trying to sell a book to you, and at the end... Special price for their book. Very uncool, and I definitely won't be purchasing, but I guess if it's in print, it must be true lol.

Any way, I'm trying to drink more water starting yesterday - need my purty skin back ;).

Make Money from your Blog

Google keeps wanting me to monetize my blog with their ads. I just don't feel good about the idea (it's not remotely the purpose of this blog) and while it would be fun to get a few $ here and there, it's not an option I'm going to take.

Banana Dogpatches - ad free since 6/23/11.

Not cat-free however! Nor free of a fun pic of my father (sadly deceased), sister, brother and me in this rad sailor outfit! Gee, you can't tell we're related huh?

Now that I'm 46...

I'm not scheduled for a scan this month, but am feeling well if a bit lower in energy. Today I started my first time back to a gym in almost a year (my physical therapy had a rehab gym where my sessions took place.) a great benefit with the Good Sam Insurance is you can get 3 mos free at a Sam Fit gym, with free training.

My goal is to improve my stamina and strength. I'm fighting the two tumors on my adrenal gland, and as I've not been overlly active on a for a few mos, I'm not certain how much of my energy decrease is caused by cancer or a result of being too sedentary.

We had a fun trip to Astoria, and it turned out to be a celebration of all things Goonies. We didn't know about it until our day in town. They had amassed a group to set a world record for the most people doing Chunk's signature dance, the truffle shuffle (if you haven't seen the movie, you should catch it when you can.)

We rode the old trolley and went to the Columbia River Maritime Museum, and the town jail (opening scene of the movie.) on the way back, we stopped at Camp 18 for lunch.

Here is an iPhone shot from outside the museum.

And this was a cute bit in the jailhouse gift shop.

Mom and Liz Here for my 46th

So Ki and I are waiting for my Mom and my sister Liz at the Eugene airport. They're out here for my 46th birthday (on the - hell if you don't know what day it is you can ask lol!)

We're planning to stay the weekend across the Columbia river from Astoria. The Goonies and Kindergarten Cop were both shot in Astoria, and it's a place I've not visited yet. Liz is bringing The Goonies for us to enjoy some Chunk n Sloth love.

On the return trip we might come back down to the coast and cut over at Seaside to have a different view, and to have lunch at a Bigfoot themed restaurant (if you've looked at my flickr pics, it's the place with all the cool rusted equipment.)

https://www.flickr.com/photos/doss_shrop/sets/72157600688612083/

Overall, while my stamina can be suspect, I feel decent and am finally making (slow) progress in playing music again. And here is one of my favorite Looney Tunes characters ever.

FINALLY NOTHING BUT THE CATS!

I refuse responsibility if you're allergic to sweet kitty pics ... (and you're welcome to share your own titles  in the comments.)

Staring:

Cleopatra, a 10 1/2 year old, petite, nicer than your cat,and beautiful calico.

Calpernia, a kitten of roughly 7 months with a naughty and nice persona (lick, lick, nibble, lick, chomp)

An oldie, but still one of my faves. Shoulder Sitting Itty Bitty. (First meeting at her foster home)

The Sleepy Cleopatra sinks into a blanket.

Our little girl after being spade and introduced to her new home. (Note, this is part time sweetness...)

Modeling kitten - she wanted the publishing rights, so the deal went bust. (Always keep your publishing! And walk if it's not to be part of the deal!)

Mistress of the kitty castle! (It's so rewarding when they use their presents!)

Hmmm... What's this?

Ha - don't sit here!

Ummm ... Ki we broke the kitten.

Princess Cali reposes in front of The Home Cut Kitty Castle (filled with shredded paper and she loved it!)

The two sharing space (Cleo was not a fan at first).

Cali doing her stretch sleeping with Cleo.

This of course is Cleo's preferred lap nap position.

Here's some friendly Cali lap time.

You got a beer for a hard working kitten?

I'll do a show n tell with my guitars next week. Maybe I'll add audio to describe them, as most are unique or modified.

Love from our little family, oh and I'm generally feeling well. My upper left back section of my skull seems to finally be relaxing (post surgery I felt as if the back of my skull was a helmet and it's slowly been a receding sensation much to my relief.)

These are a Few of My Embarrassing Things

NSFDD (not safe for delicate disposition)

I've been chastised by relatives and friends for not updating the blog enough. So I thought I'd share some of my gnarlier (dude) cancer-treatment-induced incidents. Most are potty related, but not all are about human waste (promise.)

(If you hear the tune from Sound of Music, "These are a few of My Favorite Things," you'll need to roll thru the "most embarrassing" a bit quickly - do I know most of my audience or what? And if you're Chris Tso, Steve Read, Ryan Bouslaugh or Steve Spalding, I'll try to find a Robin Trower song instead ;), perhaps Bridge of Embarrassing Things, or my favorite misheard song (Deep Purple) which Chris kindly corrected me wasn't actually "Blind"Woman from Tokyo (it's "My" Woman - but even Ian Gillian can't remember his lyrics.) Frankly I think "Blind" is a far cooler lyric! 

Now I do have to share, I take exception with certain things - like why aren't the word police trying to change the pronunciation of Em-Bare-Ass-ing, as they've somewhat successfully changed harassment and Uranus so we are no longer able to be giggly kids getting to say what used to be funny-naughty? I never got the memo, so I prefer the old-fashioned way in these cases. Oh the humanity!

And if you're British, I definitely prefer saying "uh-loom-ih-num." 

Worst moment occurred twice, but THANK THE UNIVERSE I was home.

Mix - coming out of 10 full head radiation treatments, and having brain surgery ... Me in sweatpants and a wheelchair needing to reach a toilet urgently. I left the chair at the top of the two steps up to the living room, and balanced with both arms stretched to each wall in the hallway (benefit of height) and just not making it in time, of course immediately my sweats filled with grossness. Yeah that happened twice...

Flying overnight to Hawaii with Ki. The weather was hot there, so I wore a pair of light thinner fabric chinos (yeah, this kinda sets itself up), and I had a window seat. All of a sudden it's starting to feel as I might need to urinate, so I slowly make my way to the back to use the plane torture potties. And what? Both are occupied for a while, and just before one opens, about 20% of what I need to vacate from bladder decides it's waited long enough and I now have a lovely & obvious wet spot. I managed to get relatively well cleaned up, but those bathrooms barely fit a sink, mirror and toilet, so maybe I missed the miniwashing machine in my moment of panic... Then comes the walk of shame back to my seat. Fortunately I wasn't looked at much, as passengers face fwd and I was coming from the back, but I'd guess with my compromised balance, it wasn't altogether unnoticed. I was horrified the couple sitting in my row would see (and judge, like it matters) but they moved out of the row and I turned my back to them and hurried to the window seat and placed magazines on my lap before starting to read. And thank goodness the air on board planes tends towards the drier side. By the time we were landing, all visual evidence had gone.

When my brain was operated on, and the surgeon removed the largest tumor, I had to spend a few days in the hospital (I'd hoped for an out-patient option... Cut scoop and sew!) and I had been taking an anti-seizure medication called Keppra. I had a handful of seizures around that time (of course all at opportune moments - I still haven't gone back to a certain super good restaurant called The Original Breakfast in Albany where I passed out and seized. 

Back to the point, it was late at night after the surgery, and I was recovering for a few days in the hospital (no cable humph!) one of the assistant nurses came in, and wanted to draw blood etc., but I didn't know her. I pretty well freaked out on her and pushed the call button a few times. (This is why I won't take Keppra nor Dilantin again.) The nurses assistant was nice, even though I kept saying "I have no idea who you are!" Ki had gone to grab a snack, and I was imaging this sweet lady from Africa with some facial scarring was a patient from the mental ward posing as an assistant nurse. How stupid is that? 

Needles to say, I found myself apologizing a few times, as I felt complete and total chagrin (like totally - dude), and she was kind enough to say she should have been introduced by either the nurse or the assistant nurse whose shift was over. I'm very lucky she stayed assigned to me so I might be able to make amends. That kind of memory can linger with me, and it was important to give her a better impression of me (I know, brain salad surgery and meds can be blamed, but in the end she took great care of me, and I'm happy to have been in her care.

I will say there are 3 things I'm extremely proud of:

     1 - My great partner Ki whom I love more each day.

     2 - My amazingly supportive family.

     3 - Still being here, and fighting to live and love.

Okay funny photo moment:

I realize it's past Mother's Day, but it's still close enough, so Anyone still reading who's a mother or just a bad mama jama ;), thank you for your continued interest, love and support!

This Week in CT Scanviile

My last scan was on Tuesday.  Yesterday my oncologist called with the results.

Good news - only 1 spot in my lungs showed some growth, and the same on my adrenal gland. There was some reduction, but not much.  I'm hoping the restart of taking the faux Gleevec will start more reduction.

Bad news - Taxes freakin blow, but at least they're done for 2013.

I'm moving around much better now, and trying to get some walking into my routine again (no thanks to the rain).  I've also had people remark that I'm looking a bit better, so here's 2 shots from the last month.

Nice fancy undies in the window behind us... Taken while we waited in line to see this:

This was a great comedy show featuring old school comedy drag performers and some of the new guard of drag (we had a blast).  Ki and I stayed overnight on the trip down and on the way back (Fri & Sun) with our good friends Daniel, Armando (and Logan who is our friend, but we don't know him that well) in Medford while Sat night was at the Whitcomb in San Francisco (very nice older updated hotel).

I finally got a shot of these hilariously painted industrial trucks in front of Mt Shasta (iPhone from the interstate - I've tried to get this before but the only useable view is from the interstate). Check em out.

 

We also saw Chelsea Handler in Portland last weekend - very fun. No pics, but I don't think any were needed.

Also you may remember my sharing of the "Computer Says No" skit from the show Little Britain, but now I have a replacement pic.  It's dubbed "Cali Says No" and I think you'll see why.

So I'm holding on cause it ain't over yet.

Going Back to Gleevec

I had some not so great news this last week and yesterday.  We had a Cat Scan last week that revealed a PE (pulmonary embolism - blood clot) and yesterday we met with Dr Wallen to find that my lung mets were slightly larger, I have additional stomach tumors and my original tumor was a little bigger.

So now I'm taking anti coagulants (Cummaden) to dissolve the clot and Dr Wallen suggested I restart my Gleevec as my cancer may have resensitized to it since last summer.  So while it's not good, it could be much worse.  We still didn't feel the time was ripe for the chemo pill, and that's pretty much all we have left, so I know I have more time than I might.

If you know the old song "Going Back to Cali", (LL Cool J), you'll appreciate how that title flows better than Going Back to Imatinib... Fortunately I still have just under 3 mos supply left groom my last use.  It will be a bit tough to rebudget in the cost of more Gleevec, but we'll figure it out.  If I have to sell some gear, well that might happen, but I can likely save the $420/month for 3 months and so forth.

Still hanging in, and fighting to be around for a longer while than I might.  Thanks for the support, it means a lot!