Thursday, August 28, 2014

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.

Saturday, August 23, 2014

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!

Friday, August 22, 2014

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?

Thursday, August 21, 2014

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. 

Tuesday, August 19, 2014

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.


Thursday, August 7, 2014

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 ;)


Tuesday, August 5, 2014

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.