Mark another Christmas & New Years off!

So I'm quite fortunate to be able to see 2014 and to have been able to visit with my Mom, Sister, Brother, Sister-in-law, and my 3 nieces and nephew.  I went the week prior to Christmas to South Carolina, then came back on the 22nd to be with my partner Ki.

I carted a suitcase loaded with presents for everyone, and am lucky to have a sister who works overseas and who has a bazillion frequent flier miles.  

My return home was eventful, as we just adopted a new cat (an associate of Ki's was fostering her and her sister) to give Cleopatra a friend.  And the addition is around 2 mos. old.  She's a little orange kitten we call Calpernia (or Cali P when she's rapping - Cleo's street name is C Pat).  Cali is sweet, but also a bit of a brat (she's a kitten...).  I'm glad Cleo is taking to her now, as she's such a mello cat, being stalked by a little kitty is probably not her favorite thing.

My next scan is a little over a month out.  Physically I'm walking unassisted, and driving again.  I can't jog yet nor play much music with my left hand, but I'm still working on that.  The hope is that the Yervoy will have a good and long impact (from the end of the Summer).  

I'm going to try to do some longer walking each day, and soon I'll take advantage of the free 3 mos. gym membership the physical therapy provides.  The idea is to strengthen my body while I can to help the immune system slow/stop the cancer from spreading more.

Here's our sweet bratupuss Cali sleeping on my lap.  (The shaved belly is from her spay operation at the humane society before we could take her home).

Hanging Tough

Simple post-oncologist visit here.

We didn't scan but instead did blood lab work, and there were no changes from the last set of labs.  Dr. Wallen wasn't too worried and at first I took that as a bit of nonchalance (he has an interesting bedside manner) but then I felt that I'm a bit tougher than I'd thought, and that he felt I was doing okay (Ki agreed with my assessment).

So the bottom line for now is things haven't changed significantly, other than my being able to drive solo and walk unassisted.  My left hand is still improving, and I hope to be able to play music again.

Other news is we're getting a kitty sister for Cleopatra (she's our cat featured in other shots).

Billing Blues

Can I just say, I'm wayyyy over dealing with bills that don't state what service they're covering?  I'd rather get bonus automated reasons (denied for being X, as well as Insignifigant and Degatory - I believe I shared those terms a while back?).

A bit of advice, if you're switching insurance plans, make sure you're current providers have the start date for that plan.  My oncologist sent labs to my old hospital up in Portland 7 days after my insurance changed, and as a result, I received a lovely letter from said hospital stating my claim from Aug was being denied by Meritain/Aetna.  

I had a few difficult bills from July resolved recently due to the current hospital group not billing Meritain and going directly to Aetna (who I'm sure started this 2-step payment system to potentially cause bills to not all get paid by them... ) I sure have no problem pulling the C card out when I have to explain this, fortunately it hasn't been needed much.

Still waiting to have a full 3 mos. pass since my last Yervoy infusion to meet with my oncologist.  

Other than the occasional stutter breath, I don't notice much.  Hopefully the continued physical therapy is helping increase my body's ability to heal?  I've been walking cane-free for a month now, and the vacation to Waikiki over Halloween had me do so much walking, that I feel it's helped give me enough practice and push to not need a walking device for now.

So there's the mid-fall update report.  Not too much change, but some nice travel.  Oh and I'm being grandparent-like and buying the occasional Christmas present from the buy one get one tv ads.  I can't believe how much effort is involved to upsell your online purchase!

Sleep hasn't been easy some nights, so I'm trying to not feel like this:

What's it All Mean?

Here are The nitty/gritty bits after seeing Dr. Wallen:

- Lung tumors had mostly minimal growth, with the largest adding only .5cm in size.

- The orignal rectal tumor area is showing some activity, not a lot but that's new.

- Other than that no changes in size for the groin lymph node, nor in the ones on my stomach and adrenal gland.

          Warning ick factor...

We won't know what the full impact of the Yervoy treatment until the next scan, which hasn't even been scheduled yet.  We meet Dr Wallen again in early December.  So unless I start seeing regular and increased bleeding with my bowel movements (it's not very common right now), we will be crossing our fingers and other crossable things hoping for more impact from the Yervoy.

       

           Safe to continue....

There is a newer Gleevec-like pill Dasatinib/Sprycel which carries an even bigger sticker price than Gleevec, that Dr Wallen is going to attempt to get approval for and if the insurance says no (computer says...no...what's that reference?) he'll try to appeal for drug assistance from the manufacturer.

On the rest of my bits... I'm walking fine without a cane now.  I still need more stamina, and am working towards driving again.  Ki and I practiced in a nearby supermarket parking lot after hours, and I seem to be ready.  I need to take a test with Amy the occupational therapist to drive again (the whole seizure business plus living with a health care professional kinda requires it), and I gotta say, I'm looking forward to driving again.

Now if my left hand will finish coming together I can start playing guitar again!

http://m.youtube.com/watch?v=sX6hMhL1YsQ

PET the kitty and Scan the Body

We have a PET scan scheduled tomorrow and this is my first time getting one with Good Sam Hospital.  All the group at Providence PDX asked was for me to not eat or drink anything 5 hrs prior.  We received a packet with instructions of what to and not to consume up to 72 hrs before.  I'm making chili for tonight that falls within the 24 hr rules.  

I just hope the scan shows no new cancer progression.  As far as the Yervoy treatment is concerned this is about a month and a half too soon, but it's on the schedule Dr Wallen has for me.

Wel'll meet with Dr Wallen next week to discuss the results as well as next steps.

I'm walking fairly well, but still need better left hand coordination.  Working with the therapists at Good Sam has really been helpful.  I have a feeling that I'm close to getting over a wall with my left hand.  Hopefully I make progress internally as well as externally.

Music of the 70's

I'm certainly a child impacted by multiple decades of music.  From The Carpenters to Queensryche and between, its interesting to me how much tunes from the 70's seem to be knocking on my head these days.  That would be the first popular music I listened to thanks to my siblings (both older and more age appropriate for music from that era.)

Of course they weren't the only source for my interests in modern rock (NIN's The Fragile is one of my fave collections/albums of music ever, yet I don't think either Liz nor Tres have heard it).

Perhaps it's the high level of production artistry and polish that comes with songs like Love is the Answer by England Dan & John Ford Coley, or the amazingly original and unique prog rock provided for years by the mid 70's version of Kansas (listen to the non singles from Leftoverture and Point of Return).

I'm in a waiting period for the results of the Yervoy infusions (roughly 2 more months).  My breathing seems to be the only bodily function to be less than optimal (unless you count the possession of my left hand which I'm slowly prying loose and using better).  Frankly I'm not certain if the lung mets are the issue, but we will have a scan soon to see what's going on there.

 

Ki and I went to celebrate my wonderful mother's 80th birthday.  I was glad to have a non stop flight each way to PHX from PDX.  We put pics of her in backlit frames which sat on each table at the party (think of a cube with a photo in each side with LED lights in the middle.). We did a great job finding shots to use, and cleaned up quite a few older ones in photo shop.

I was able to get around both airports relatively well, which was a lot of walking in the end.  Regardless of the progression, stagnancy, state change or whatever, my exterior seems to be making solid progress.  Really increasing stamina is the big deal for me.

I was also proud of my extended family and the support and love they showed for Ki and my relationship.  Only got preached at once and was cut shrt (thank goodness the cake arrived when it did...).  I realize it comes from a place of love, and will leave it there.

Just Sit Right Back...

Over the last week I've revived 3 notices that I'm a plaintiff in class action lawsuits, where I don't need to do anything but wait:

Papa Johns - for sending unsolicited emails (complete with a coupon for a free online order pizza)

Sony eBooks - I don't know why really... (But they didn't offer any olive branches)

Naked Smoothies - apparently I'm not the only person who questioned the 100% juice claim when they list other non-juice ingredients... Pepsi-co agreed to pay for that, but are still holding to the claim that the drink is GMO free and Organic etc.

So the cancer/health nitty gritty ...

My MRI results (head scan only) showed roughly the same results as in June after surgery.  The remaining tumors might be very slightly reduced, but likely the same.  That's good for now.  

I've had solid results with Physical and Occupational Therapy.  I'm being challenged in Physical Therapy by standing on a Bosu ball (lower part of a ball - about a foot in height and a rubber flat top for standing) and throwing a light small medicine ball into an angled trampoline and then catching the returning ball while maintaining balance.  Occupational Therapy is trying to help me get better coordination and use of my left hand (I've made progress, but playing guitar is still very tough, so hopefully I'll see some improvement on that front).

I have my last of 4 infusions of Yervoy next week and I'll meet a new primary care doctor as well, which will be interesting.  I really liked my doctor down south, but I need someone here to cover that stuff too.

The music room is super close to completion, just need to get the keyboards in place, which will be great for running scales with both hands (my main board is a Kawai MP9500 with wooden piano keys).  It's accordingly heavy, so it's not easy to set up right now, and I need others to pick it up (bending at the knees of course) and place it on the stand.  I can't find my mini mixer yet, but it's certain to be in one of the two remaining boxes.  It's been a real process finding the bits I need having not packed the gear up myself.  Of course having the help was amazing and the move only happened as smoothly with such great help.

Ki is doing a lot still, so I hope I can get together enough to drive and get some of my stuff handled without him needing to do so much.

Sing About Coconuts and Hair Fuzz

I haven't wanted to complain about how unpleasant my skull has felt since I had a chunk of my brain removed.  The best comparison would be if a tight coconut replaced the back half of my skull.  

This last week the coconut feeling has finally started to relax.  The lower back in the area starting in the middle has become far less stiff and the upper section is better than before as well.  My hair is growing back sorta, and that's kind of annoying as it doesn't want to brush or look decent.  Hmph..

So coconut head no longer!  It's a very welcome difference.  

I had my 3rd Yervoy infusion this week, and it went well.  The group here at Good Samaritan hospital don't do much with it, but I feel solid in their care.  Nice group of nurses and that really helps.  Gotta hope the 2nd time round with Yervoy brings me some luck!

We'll be scheduling a follow up M.R.I. to see what is happening in my brain post radiation and surgery.

Ki has been concerned about my weight as I've dropped quite a bit (roughly 55lbs) and this last week I was up a whole 5lbs.  One of the night time meds I take for sleep has the added benefit of making me crave pop tarts... 

We also supplement my diet with a "Boosted Juice Smoothie" daily and I'm tempted to send them an email asking how they can claim 100% juice and proceed to list a bunch of vitamin and vegetable  additives which would be more than 100% which isn't possible.  Then I think of the large chuck of brain I no longer have, and marvel somewhat that I'm still me, and drink my juice (no I don't go by Shelby).

Ki and I started on the music room and he did the vast bulk of the work to get my desk rebuilt.  Now the drag is trying to find bare minimum components to the computer set up which weren't packed in their original boxes.  I'm not certain where the audio interface is, but I'll find it.  The plan is to get very minimal in terms of what I set up right now to facilitate a quick build.  

So basically...

 Less coconut head

 Yervoy has one more infusion this round

 A follow up M.R.I. from surgery results coming soon

 Started music room rebuild

 Pop tarts rule (simpler flavors seems better - why over complicate it?)

 Truth in Smoothie advertising 

 Hunting the audio interface

Sing About Coconuts and Hair Fuzz

I haven't wanted to complain about how unpleasant my skull has felt since I had a chunk of my brain removed.  The best comparison would be if a tight coconut replaced the back half of my skull.  

This last week the coconut feeling has finally started to relax.  The lower back in the area starting in the middle has become far less stiff and the upper section is better than before as well.  My hair is growing back sorta, and that's kind of annoying as it doesn't want to brush or look decent.  Hmph..

So coconut head no longer!  It's a very welcome difference.  

I had my 3rd Yervoy infusion this week, and it went well.  The group here at Good Samaritan hospital don't do much with it, but I feel solid in their care.  Nice group of nurses and that really helps.  Gotta hope the 2nd time round with Yervoy brings me some luck!

We'll be scheduling a follow up M.R.I. to see what is happening in my brain post radiation and surgery.

Ki has been concerned about my weight as I've dropped quite a bit (roughly 55lbs) and this last week I was up a whole 5lbs.  One of the night time meds I take for sleep has the added benefit of making me crave pop tarts... 

We also supplement my diets with a "Boosted Juice Smoothie" daily and I'm tempted to send them an email asking how they can claim 100% juice and proceed to list a bunch of vitamin and vegetable  additives which would be more than 100% which isn't possible.  Then I think of the large chuck of brain I no longer have, and marvel somewhat that I'm still me, and drink my juice (no I don't go by Shelby).

Ki and I started on the music room and he did the vast bulk of the work to get my desk rebuilt.  Now the drag is trying to find bare minimum components to the computer set up which weren't packed in their original boxes.  I'm not certain where the audio interface is, but I'll find it.  The plan is to get very minimal in terms of what I set up right now to facilitate a quick build.  

So basically...

 Less coconut head

 Yervoy has one more infusion this round

 A follow up M.R.I. from surgery results coming soon

 Started music room rebuild

 Pop tarts rule (simpler flavors seems better - why over complicate it?)

 Truth in Smoothie advertising 

 Hunting the audio interface

2 Steps Forward, 1 to the Side

Mobility Progress Report:

1 Feb - May 

    Wheelchair Days

2 June - Early Aug

    Walker Days

3. Mid Aug ...

    Cane usage and unassisted stumblage

So these days I'm in the middle of Yervoy treatment which is roughly a 4 month process and I have had great meetings with my Physical therapists and Occupational therapist.  I can get around using a cane easily and without isn't too hard, unless I'm tired.

My hair is super grey and my head doesn't hurt as much, which has taken a long time to see much of a change.  I hope writing about it doesn't jinx me, but I've certainly wondered how long before I saw the area of tightness reduce.  This really gives me a better feeling as having the back of my head feel tight has not been much fun.

Ki and I (mostly Ki) put my music room desk together yesterday, and I'm super jazzed to get a few more items together (keyboards/midi stuff), computer and audio stuff, and guitar gear.  It'll be fun to see what I can manage.  The left hand is improving, but it's still far from where it was.  I'm going to keep to minimal gear in general so I can get up and running, but we still need to find the best place for the gear, the room is great, but placement is key for ease of use.

Here's to hoping the Yervoy does what we hope and I keep progressing physically.  Much love and thanks for those sending love and support my way.

Bird is the werd!

So I'm so proud of my good friends Daniel and Greg for having such a loving commitment ceremony over the weekend.  Ki and I drove to Medford to be able to see their moment and found it to be a lovely event.  It was super important for us to be there.  We were able to see so many of our closest friends.

My physical therapy has me using a cane now.  So I've graduated from chair to walker and now to cane, or wall.  It's great to walk around more freely, and the goal of course is to just walk normally.  My left side seems to be struggling to come back, but I'm going to keep trying.

I'm working on my left hand with a grip master, Chinese exercise balls, and putty.  Hopefully I'll get to have enough coordination and control to play music again.

Treatment wise I've had 2 infusions of Yervoy, and I really hope that helps reduce or destroy my tumors.  Keep sending your good vibes and energies and I'll keep working on my health.

What's old is new again

Big change to my treatment.  I ran out of Cobra and fortunately Ki's insurance plan allows me to sign up even though its not open enrollment based on how long we've cohabited here in Corvallis.  The drag is my care at pdx providence is now out of network... And the minimum out of pocket per year for me to go there would be $15,0000 and being in the middle of Yervoy we'd hit that in one  treatment.

Yesterday we met with our new oncologist down here at the Corvallis Clinic, Dr Wallen, and it turns out he spent his residency in Washington working on Melanoma, so he's a great new choice for me.  He's worked with mucosal melanoma back then, and had quite a few ideas.  He thinks we should biopsy the brain tumor that was removed to see if its not modified now that the Gleevec is no longer effective so we could approach it with a new perspective.  

We're going to finish the 2 remaining Yervoy infusions and see where things stand.  He knows Dr Curti, and can use him as a resource too.  I feel quite good to be working with him, and it's great to have someone who has his history working with melanoma.  Crazy good luck that he was the one who came up here as the referral was location focused rather than dr specific.

I've decided against riding the coasters at the county fair... Oh well.  Unless the physical therapists want to go...

So that's the big news, and it's pretty big as the group at providence have worked on me for so long.  But we might just get lucky and really benefit from a new perspective.

Substitute PT

I'll be seeing the physical therapist twice weekly, and I met with 

Paul for my 1st official session.  Ill be working with him and Jeremy since we have so many appointments.

It's nice to use equipment again, although maybe I should sandbag with Paul so he doesn't kick my butt too hard (no point in sandbagging though) today I broke my first exercise sweat (very light) since January.  After these 2 are done with me, I get 3 months free membership to the SamFit gym the hospital opened.  That will be interesting and hopefully I'll be able to use it!

I go in for occupational therapy with Amy tomorrow and then to Portland for my 2nd infusion of Yervoy.  It's a big deal for the Yervoy to have an impact and I expect it to.  

Big hugs to everyone keeping up with my adventure via the blog.  I really appreciate seeing when it's read.  Ki thinks I'm weird to look at the analytical info google provides, but as a former analyst and such, how can I not?  Don't worry, I'm not doing any comparisons and pivot tables (loved those!) to adjust for greater readership...no excel access on my iPad.  My control- key shortcut mastery days appear to be behind me.  But check this link out if you need help... I knew better ones, but oh we'll right?

http://office.microsoft.com/en-us/excel-help/excel-shortcut-and-function-keys-HP010073848.aspx

New physical therapist

So my initial evaluation with my new physical therapist went very well.  After we were done he said I wasn't a fall risk.  Very nice to hear - now I just have to be careful.

I might graduate from a walker to a cane which would be interesting, but with the plan to walk normally  again.  Maybe I'll get a cool Star Wars cane.  

Today on twitter someone posted how excited they were to hear John Williams was going to do the soundtrack for the coming movies.  I had to reply wondering if we'd hear more of Holst's The Planets (Mars and Jupiter were in the first movies for sure...). I was so sad to hear The Planets as a teenager after thinking the Star Wars soundtrack was so great.  I may have to apologize for bringing that up later, as I don't want to bring someone down, but if you've never heard Mars an Jupiter, you'll hear it super quickly by checking it out.  It was likely not on purpose, but it happens.

I'm looking fwd to attending my good friends Daniel an Greg's commitment ceremony in August.  They played a key roll helping me move and get to and from the hospital earlier this year in Medford.  Between them and my great friend Steve, I'm missing the gang down south.  I could list a few others I miss, but getting me to the ER was really key over two days, when my cancer popped up in my head.

Some pics

Ki and I

Some in Glacier Bay

Cruise to Alaska

This week Ki, my mom, sister and I took a week long cruise from Seattle to Alaska on Holland America's Westerdam ship.  As my mobility is still limited, I've been using the walker to get around and walking around the cabin somewhat free- form.  I've gone way further with the walker each day than any day prior, and hoping the extra exercise helps.

Bfast day 1 - room service tip, the omelet was not good (no cheese at all), and the turkey sausage looked a LOT like mummy fingers - good coffee though.  We suspect it was Gevalia.

The Juneau valley was insanely pretty.  We got off the boat and went up the tram for lunch and the view.  Way great view of the northern lakes from there.  And very unique and tasty Fish n Chips with Salmon.

Bfast day 2 - bet some folks complained, as there was actually cheese on the eggs and the rest waks about 40% better.  We went to Glacier Bay and saw some massive ice fall a few times, also we saw whales from afar blow water out their blow wholes.

Bfast day 3 - better again, maybe different cook?  

Our ship went to Sitka, Ki and I remained in our big cabin (free gimp upgrade), and mom and Liz went to shore riding a very uncomfortable emergency boat.  This is the only place on our tour the boat didn't dock ashore.  The world's best acoustic guitar top may come from Sitka spruce wood, but aside from a very pretty valley, and a surprising number of inhabited islands, cost of living is a bit high $6 for a gallon of milk etc.

Bfast day 4 - as we stayed on ship we went to the buffet and experienced the lack of manners that seem to be the hallmark of roughly half the passengers.  Food gets a meh.

We stopped at Ketchikan the next day, which is the oldest city in Alaska.  It had some neat totems, the only used-to-be red light district houses were on poles down a canal (cool looking houses) and Ki and I took a duck tour on an amphibious craft that looked more like a bucket than a duck.  It was fun and not too long, and I climbed the ladder to get on board with out a problem.

Bfast day 5 - cereal, coffee and fruit.  Before disembarkation.  

I won't go into details, but people who contract to pick you up at a cruise ship need to answer their phones...

Ki and I had a lovely time and I'm pretty sure mom and Liz did too.  I have a t-shirt  that says bears love people with a cartoon bear jumping to eat someone.  Very funny.

My walking appears to be improving, but my endurance still needs some big improvement.  I'm worried my original tumor may be returning, but we'll see about that.

Cleo the cat is thrilled to have us home rather than various caretakers.  But we were lucky to have help with her.  She's such a sweet girl.

That's the basics - I'll post some pics soon. i actually smiled in some of them.

Sorta Walked

I'm kinda excited cause after washing up for bed last night I  just picked up the super lightweight walker at the sink and carried it to the bed side rather than rolling it last night.  I kept it in front in case I needed to support myself with it as I irresponsibly fell forward.  But I made it fine.  What I really need now is stamina, so I don't tire too quickly.  And don't worry, I'm not going to be reckless, no running or dancing...

As the temp has gone from 69 to 94 ( today) were not walking outside right now as I'm a convincing wuss about what I can do.  I have my first date with a physical therapy clinic tomorrow.  It'll be quite telling to see what they can get out of me.  I'm gonna try my best, but no passing out allowed.

I saw on Facebook a celebration of my friend Les Krambeal's life (he recently passed from cancer), and I have to say I was moved to remember so many of the fun conversations we'd had over the years.  I want to send love to his partner Gordon Owsley and those who celebrated Les.  I know Les lived a full and fun life.  Les and Gordon were amazingly generous in providing get togethers back at their home in Ashland.  I miss those times.

Speaking of fun, my sister found an Alaskan cruise, which she, my mother, Ki and I are going on at the end of next week.  Hopefully I won't lose my balance and go swimming.  My father always wanted to go on an Alaskan cruise, so this is a bit of an homage to him.  I have a week and a half to build up stamina, so I plan to get my daily exercise back up.  The kitty needs to get out of the way though...

If I haven't managed to keep in touch, please know I'm thinking about you, and I'm trying to not identify with the sr citizens on the multitude of scare the medically needy elderly commercials that are all over the television these days.

Don't tell my sister... But we would have rather gone on the cruise later in the year with the drag queens from Rupaul's Drag Race.  I'm kidding sorta... 

Here's a shot of Liz and I from years gone by...

So we'll see with this

We just received a call letting us know we're approved to start another round of Yervoy.  It will be on the 13th, and that's good as we're going on a cruise with my mom and sister.  This means we'll do the second dosage at the end of the month.

I really hope it has the desired impact, and it makes me quite hopeful!  

Roxanne said they'd seen good results on a second round of Yervoy, so cross what ya got for me and I'll  let ya know how it goes.

Ups and Downs

So we had good and bad news from our scans yesterday.

Good:  the smaller 3 brain mets are slightly smaller.  Dr Critenden thinks its possible the radiation is still working and some of the blood is having a similar impact to the larger tumor which unfortunately may have some small viable cancer cells still.

Bad:  5 of the tumors in my lungs are larger and I have 2 new tumors, 1 in my adrenal glands and another in my stomach.  This means the Gleevec is no longer keeping the cancer in check.  

There is a new pill we can try that's specifically for Melanoma but if I get lucky the insurance company will let me have another round of Yervoy.  There have been some luck with people taking a second round of Yervoy and the side effects were nil the first time. That would give us 2 options to use, and that would be great.

There have been worse results in previous visits, so I'm not expecting this to be the last of my progress. Even if I just switch to this new drug, I'll plan for more time.

The brain area improvement is much bigger deal all things considered than the new growth.  So I'm celebrating that more than focusing on the bad news.

Out hotel was slightly disappointing even though a lot of our friends love it.  I had high hopes, but it was a let down.  

We have a few trips planned, one to Sun river, the coast, to so. Oregon, and later to Arizona.  I'm improving in my walking a fair a lot and feel good about my progress.  Ki is finally managing to get me out of the house.

Keep in mind I've survived much longer than most people with what I'm dealing with.  Of course most of them don't live with Ki, so I'm lucky on multiple fronts.    I also appreciate everyone who's been filling the blog.  It means a lot to me.

Follow ups and Scans

Okay so next week I have 3 follow-up appointments, and 2 scans.  Scheduling has been insane in the membrane...if you don't know that song reference I sincerely am saddened for your lack of modern awareness, as that song is a serious musical cultural touch-point!

I have an MRI and I think PET (might be CT) scan Monday and then meet my radiation oncologist Dr Critenden and later Roxanne (instead of Dr Curti).  Tuesday I meet with my neurosurgeon Dr Baggenstos.

The dates kept getting moved around and now we're only staying up in Portland on Monday night.  Rooms up there are dang pricey and full right now.  Probably a good thing our schedule compressed like it did.

This scan will determine if the other tumors in my brain need gamma knife soon, or if they're staying the same.  I'm mixed in my hopes, as I want them gone, but non-growing tumors would be better news than seeing them grow.

Thanks for keeping up to date via the blog.  It's very helpful for me to only need to give these details once, vs. a bunch of times.  

Not my best move

Last week I took my first tumble...

Now I have a lump on the back of my stupid head as well as a sore mid back.  I was sitting on my walker chair and passed out, likely had a seizure.  I fell backward and got stuck in between the bars of the walker and had the seat pushing into the middle of my back. 

I couldn't lift my neck nor push myself out of the walker for some time.  Ki was trying to call and came home to find the walker lying on its back and me lying on the couch.  It must have taken about an hour for me to crawl to the couch.  I was so lucky he was trying to call and came home to then take me to the ER at Good Samaritan hospital.  We took a CT and no problems, and the ER doc saw no change in the tumors in my head from the last scan.

So I'm behind in my progress for healing, but at least nothing overly serious happened (whatever - I'm mad that I didn't get to the couch earlier.).   The day before I asked my physical therapist to help me climb the stairs and I zipped up two flights by holding one banister and he and Ki where both amazed, so that was cool.

At least we didn't have to go to see Cindy Lauper that weekend...  Okay I'm so joking, as that would have been a great outing.  I'm still taking the "bake a lasagna" challenge Vincent threw out last week.  I'm assembling it tonight and baking it tomorrow.  I make a great lasagna, except poor Ki has to get the esoteric vinegar I need for marinades but we have a monster Market of Choice for ingredients here close to the hospital.

Stupid head...

Finally a Reason to Admit Being in Marching Band

I've had a slight goofy foot with my walking - my left side has been pointing inward and not stepping normally.  Fortunately my right side is normal, so I can see what I should do.

Vincent was walking with me outside yesterday with my new walker, and both of us were trying to get my left foot to walk correctly, and he had been in marching band.  So when I suggested using the rolling foot technique from band, he totally got it, and it is helping a fair bit.  My left knee gives just slightly, but I'm really happy to find that I can get it right with the marching foot roll.

Now I'm trying to sing again, which is pretty weird and not so good.  I might be limited to my natural low baritone range, but I've only just begun...  Me and Karen.

Okay I made it.

Happy 45th birthday to me... It's weird to think I might not have made it.  Lots for me to be lucky here. Not least of which is my great partner Ki.

You know the shows saying the sun is dying and can we survive crack me up.  I'm not overly concerned about the sun dying in 5 billion years.  How can the writers of these hyped up scare em shows sleep?  Funny commercial was just on tv.

So I have a CT and MRI scan slated for the 22nd and follow up dr visits with the neurosurgeon on the 13 and both oncologists to go over the scans on the 24th.  Lotta info that week.  We'll know if the 3 remaining brain mets need Gamma knife or if we will leave them alone with the hope their blood might kill them off like the one we removed.  Who knows.

It's tough as I don't really want more procedures on my head, but I like the idea of getting all the cancer out of my head.

Not a new cat pic

So I've started watching the tv show Grey's Anatomy, and while its not realistic (having a partner who is a resident gives you an idea about it - you can't jump specialties as easily as they do on the show- it's like starting residency all over).  The parts they get right in my opinion is how many surgical complications result in death... And this has been the year of getting my head cut open, so I find myself switching to other shows a lot as I'm fearful the next time I have a procedure, I won't be so lucky.  I wonder if they'd fight over who gets to operate on my rare cancer, since that's how they do on the show.

The good news is I believe the doctors I've worked with in Portland are super talented.  Apparently the closure for my brain surgery is going to be hard to see, except maybe the part in my bald spot(yay)...non of my docs look like Eric Dane, but that's fine.

Of course they don't have a kitty for your lap, but I do.

I got my new walker yesterday and I'm hopeful I won't need it for too long.  It's very nice and sadly for mom, it's blue.  Sorry mom, I know you like the burgundy but the store only had this superior color of blue.

Hey at least I'll make it to 45 tomorrow - then 45 + 1 day etc.  one of the poor Finch babies fell and broke a leg on the porch.  It didn't last the night, Very sad, but a hanging flower pot is likely a bad choice to lay 4 eggs.  Confused euro birds I guess.

On a different note, I'm trying to play acoustic gtr (not well) and make singy noises with my mouth, and that's not too easy right now, but there's been improvement.  Even if it scares the lap kitty.

Check these eyes

Okay you know you're envious of our kitty Cleopatra's insanely pretty green eyes!

I didn't have therapy visit today and likely will only have one more visit this week, as my birthday is Thursday, and Vincent didn't book this week, and who wants therapy on your birthday?

I did my exercises today, and Ki was getting razzed by the finch family on the porch as he was putting together some outdoor furniture.  Those things were persistent and chirpy.  The new walker arrived but we were busy dealing with finch bombs and such.  I'm sure we'll get it up and running soon.  Vincent said it will require more strength to use as it has 4 wheels to motivate rather than the one I've been using ( it's the tennis ball under the back feet variety sans tennis balls).

 

Might move to outpatient

Just had a very nice session with Susan, as she evaluated my walking progress most of the hour.  She really had a lot of good advice and let me know I've shown more improvement.  

She indicated I will likely transition to an outpatient therapy clinic in a couple of weeks.  So rather than home therapy, I'll need to go a clinic to see the therapists.  Also I Might need to book a ride on a disability van if Ki can't drive depending on the schedule maybe I'll hop behind the wheel again and zoom around town.  Yay - fun, and kinda scary.  Naw I'll be smarter than that.  Vroom vroom in the turbo!

Cleo the cat sure loves Susan and I think she'll miss the visits.  Hopefully I'll be even more improved by the time I shift to outpatient, so I can walk unassisted.

I'm watching the French open and am super bummed watching Jamie Hampton losing to 

Jankovic.  From what I've seen oh Hampton, she really should be waxing Jankovic.  She's an exciting up and coming American player.  Makes me wish I could be there to cheer her on. 

Replacement Lead Singers

Okay I just watched a Journey concert in Manilla with Arnel Pineda singing (the Philipino singer who now has replaced Steve Perry),  and it reminded me of debates we had in the office over a band finding a younger singer who mimics another older vocalist's style from back in their heyday, and perhaps better than the original can now that they're older - this would only really be the case of the  stratospherically high flying singers:

Steve Perry 

Lou Gramm

Brad Delp

Steve Walsh ( never to my ear successfully duplicated, especially on the insanely high vocal parts on lesser known songs)

Ironically for me the only time I was mad at the attempt was when Steve Walsh quit Kansas and was replaced by Dino Elefante  (they had a hit single, but he couldn't touch Walsh for keyboards nor soaring vocals)..,

Why does it not only not bother me that Arnel sounds better than Perry currently, but I cheer him on?  Some of my friends would always side with the old lead singer, even when the reason he wasn't singing anymore would paint that singer in a negative light vs the band, and generally I would applaud the musicians for fighting on?  Who knows, but my reaction to the shift in Kansas in the early 80's keeps me from understanding ( except Steve Walsh from that era could out sing anyone in rock in my opinion)

I did three sets of all the exercises today, and went for a countryside car ride with Ki to get out of the house.  So hopefully the exercises are building my stamina.  I can do more before taking a rest already and that's a big deal.  I still don't want to eat a lot, but am managing at least 1,500 calories or more each day.

Oh and I likely side with the musicians (like in Styx) as I am a musician and have dealt with lead singers who weren't always "in the band" so to speak.

Meet the Finches

Ki hung some flowered pots on the porch and a budding finch family moved into the one with red flowers.  2 eggs and a mom and dad.  The dad isn't overly into Ki being out there to water the flowers, but we'll sick the kitty on em if they don't chill out.

I managed 3 sets of the exercises yesterday and set a schedule with Ki to accomplish all of my assignments.  I realized its lumosity.com vs. luminosity.com, and located the correct app to "train my brain" and improve my mental focus.  

Ki had to bathe the kitty after giving her some flea medication, and boy you'd think there was serious cat abuse at first, but she got over it and is just making Ki pay by bumping her head into him so he'll move.

So far today I've done 2/3rd of my exercises, and am trying to keep to the schedule.  Bleah to a schedule, but I'll be thrilled when the results come and I can walk without a walker!

Keeping focus

Vincent just left and he really pushed me to up my exercise time each day.

The big takeaway for me will be to get a schedule each day and to stick with it.  I'll be trying to do the exercises 3 times a day and 3 sets each session.  That should tire me out I think.

Also the back of my head feels like its covered in suede with light hair growing in, I'm managing to get some good sleep thanks to a variety of medicines and  z-quill.

Hopefully the new walker will be here tomorrow so I can get used to going outdoors and to prepare myself for going to the Cindy Lauper show mid June with our friends down in Medford.

Gotta relax the shoulders W

Susan just left and we had a good therapy session.  I asked for help on the balance exercise which I was missing part of.... Oops

And my walking is needing to be more relaxed which I think she got over to me better today, and as I was walking past the needlepoint "homo sweet homo" which all the straight people who see seem to really laugh at, she started laughing, which was a fun moment.  

We started doing some of the Luminosity brain training games and that was interesting.  Some are super easy, and some just aren't.  I did a lot of walking and am sorta tired.  Which is great.  

I've really come to appreciate her visits, and am glad she's part of the team.  I'll see her Monday morning and will need to be able to report that Ki and I got out of the house together.  Hopefully my new outdoor capable walker will be here by Saturday.

Oh and Cleopatra the cat was well behaved and slept the whole time.  Sometimes she just demands attention from visitors and gets in the way.  Here she is a few months ago on my lap.

I--me Wuss Today

So I had Vincent the physical therapist over today, and once I got on my feet my heart rate jumped over 100 and that kinda scared Vince so we talked more than we did.

He really wants me to build standing stamina and I do too.  He'll be back on Friday to work me pretty hard he said, so I gotta get ready and try my best to not get worn out too fast.

I'm seeing some visual flickering but was able to get my soup heated in the microwave easily.  Vince wants me reading about the methods behind runner training so hopefully that will help.

Can't kick butt every day, but I guess I still want to.

Cause my Occupational Therapist told me to

Susan said I need to document my progress as well as what I'm supposed to be doing when she leaves...

I'm walking with the walker too stiffly and need to relax my shoulders and hips.  I'm doing better with walking around the kitchen island relaxed.

I went from 1 row on the industrial puzzle at a time to completing all 5 rows while standing up.  She still kicked my tail and wants me doing all of her exercises 3 times a day.

I'm to get out of the house and have Ki take me to see and eat regularly and read rather than watch tv all day long.

I'm testing out Luminosity to see if it does my brain good for improved cognition.

I'll report in and share my progress.  She feels like I've made good progress, but worries if I don't push myself more that i could slow down.  She's totally right.

Home rehab and Staples in the Head

So 3 days back I had my staples and stitches in my head removed.  That makes putting my head on a pillows lot nicer.  The PA was super quick getting them out and I was quite grateful.

I have 2 rehab specialists coming by a couple of times a week to help me walk better, and both say I'm really improving in just one week's time, which is cool to hear. I'm trying to stick with the exercises, and Ki is doing a good job pushing me.  It's quite tiring doing simple things, and I guess the stitches must have given some support to my neck, and now it gets a little tired.

The story now is that I'll be working towards walking unassisted and get outside some.  Ki and I are planning to drive south to the Rogue Valley, for the Britt Festival Cindy Lauper show mid June with some of our good friends down there.  I better be walking by then, or I'll be sitting on my walker at a pop concert!

So far so Good with Brain Surgery

Well from what I gather the surgery went extremely well.  The surgeon said its not uncommon for a brain tumor that's surrounded by blood to have that blood kill off the tumor and apparently that was the case with the large one.  We still operated (which is how we know it died ), but unless the other 3 show changes they don't plan to use the Gamma knife right away as we can wait and see how and if the others change.

So I'm going home today, which is about as early as possible.  I'm glad to leave the hospital as its chilly here, and I don't care to need permission to use the bathroom.  If I leave the bed an alarm goes off and last night I got up to urinate twice and of course I set off the alarm.  I was dreaming that I did it, but those were extremely lucid dreams, and it was reality happening and not my fave memories right now.  

So my brain really is sore, and I've been recovering quickly per Ki, so I'm hopeful to keep progressing at a semi record pace.  After meeting with the physical therapist we decided Ki could keep working with me at home and they'll send a therapist to visit a few times a week... Rather than having me go to acute rehab.  Here's to hoping we don't have to do any thing more.  But I will if we have to.  Gamma knife radiation is supposed to be easier on you and an outpatient procedure.  I'm just guessing it will make me tired.  But who knows.

My mom and sister likely are feeling this trip might not have been as needed, but I'm glad to be able to start my recovery so quickly.  Sleeping at home will be much better than being here at the hospital I expect.  Here's to hoping I can drive soonish and cook and play music.  One of the nurses gave me a booklet for recovering the use of your hand dexterity via guitar post cancer which was pretty dang cool.  I'll be curious to try it.

Bottom line... Things are looking hopeful for the next little while.

Surgery tomorrow !

I don't know if someone cancelled, but my craniotomy has been moved to tomorrow - a whole 2 weeks earlier than the 22nd!  That's way closer to the original plan than what we were getting.

Man is this good news for me, and Ki has been calling and leaving messages to request any earlier date that opens...and to let them know some of my symptoms were worsening (vision artifacts, etc) were reverting to pre radiation effect.

I'll be prepping,most of the day, as I check in at 8 am at providence Portland (not St Vincent's),

Then the MRI at 10 am, then surgery at 3:30pm.  No chow or drink past 10am.

My recovery could be quick or a few days.  Hope I get a comfy bed!  I'll have to badger the nurse who sets that up to get a bed extension (the joy of being 6'4'').  Having my feet sticking out and being open game for Ki to tickle isn't a great thought.

Who would think getting in early for brain surgery would be awesome?  But I sure am pleased about it.  Hope it wasn't due to someone having a negative event in their cancer journey occur.  Since we're at Portland prov, rather than st. Vincent's I have to wonder if they had an opening there.

The kitty is going to have to go for a few days with no lap, the poor girl, but she grabs enough lap time uninvited to miss a little bit.

Lets hope this brings some normalcy to how I feel on a day to day basis.

5/22 is the Scheduled Date for Surgery

So the soonest open date is 3 weeks from now 5/22 so I took the time slot, and my craniotomy will be at St. Vincent's Providence up in Portland.

I wish I could get in earlier, but I'm glad to have a date scheduled finally. My sister and mom can finally decide on their plane tickets. Which is a relief since mom is in Arizona and my sister is in Ireland.

I'm getting a bit more sleep thank goodness, which is likely thanks to the pill plan Ki worked out with my oncologist team. I'm still pretty tired during the day but at least Cleo the kitty is showing a lot of spunk, and is a lot of fun.

Well if you hang with me I'll do my best to stay focused and positive. Even if you don't I'm going to try to be upbeat and healthy. I look forward to get this procedure behind me.

No surgery this week

So the dr had told us I should be operated on in 2 weeks, but apparently forgot that he was going to be out of town this week (the 2nd) week.

Kind of frustrating seeing as how my sister is trying to come from Ireland and my mom is coming from Arizona...and we need a schedule.

I did inform their schedule person of my family's travel plans, but she said a different scheduler would call me tomorrow to work it out. I'm not sure where we misunderstood (I don't think we did) but I really want to get this done, as I'm experiencing occasional eyesight flickering again.

At least they called me back with information. Its irritating, but there's nothing we can do about it. Hope the dr has a good week off. It would be best for me if he does.

Got a cookie scooper handy?

We met the neurosurgeon today and he explained in detail what I need done to get the tumors taken out of my skull ...

Kinda scary stuff but I really need it. The big tumor is likely surrounded with blood and that's pretty dangerous if it keeps spreading.

In roughly 2 weeks he wants to do the corkscrew in the back of my head, and then 2 weeks after that we'll go under Gamma Knife for the other 3 tumors as they're under 3 mm ...

Apparently the main surgery will take about a week of recovery and the Gamma is pretty much immediate after.

So I really am looking forward to getting this done. There are of course chances of complications anytime someone takes a cookie scoop to your brain but I do want to make some progress and I haven't been able to be normal in over a month and I need to be able to use my left side normally as well as sleep through the night.

Okay so this is scary but its the most likely to make things start to improve and I'm feeling solid about the surgeon.

I'll keep updating and once I have the date I'll post.

Got an appointment with a neurosurgeon

So I just got off the phone with the office of the neurosurgeon and have an appointment set for tomorrow afternoon.

Pretty fast for that since we just had the other meeting Monday .

Hopefully that means there is something the new doc sees he can do? I dunno but I need to think positive on this. We'll see if he thinks the large mass is liquid or solid. If its liquid I'll get to look like a Borg with a shunt to drain it out, but if its solid its still too large for gamma knife. I'm that case it's knives and spoons removing brain tumor.

More to come, and soon...

MRI Results and What They Mean

So the basic results are:

It doesn't appear that the big tumors reduced at all. The big question is whether the masses are solid or liquid. That will be a large determining factor for surgery and what kind.

There had been bleeding in all 4 of the brain mets, but that's all stopped with the radiation
Getting a direct before and after comparison is difficult as the comparison scans are CT scans vs. mri's with contrast.

It's not doom and gloom, but this isn't great as we're going to have to see a nuero surgeon to consult. Apparently the big tumor in the back is pretty large. The dr felt it and the other 3 could still be reducing from the radiation but generally speaking, nothing appears to be reducing. No bleeding in the brain is good news. I likely would've not lasted this long without the radiation, so it wasn't a waste, this is just the first time I haven't had more encouraging scan results.

The MRI machine was super claustrophobic but I managed to not freak out, and no passing out while laying down, which was kinda nice.

I don't know, that I would say it was a waste of time to have done the radiation, but maybe. With all the side effects and such, argh...! If I need surgery it might be a combo of regular neuro surgery for the large tumor and Gamma Knife for the other 3. I just hope the cure is worth the time and side effects.

I sure wish this were more upbeat and good news, but it could be much worse and I'm crossing my fingers that surgery happens and delivers good results. This is the first time I've not had good news. I'm hoping surgery if its the option, works..

One week from MRI appointment and address woes

So not much to report other than I have my MRI appointment scheduled for next week. I took my last steroid 1/2 pill today, and hopefully the brain tumors are reduced enough to not need to undergo a gamma knife surgery. It would be amazing to know my brain is able to do its thing adrenalin-wise and I won't need to rely on these pills anymore.

I'm able to walk from the bedroom to the living room while bracing myself on the walls or pushing my wheelchair which is a big improvement and hopefully will keep being better, - my right side seems pretty normal, but my left side is a bit out of control (floppy) relatively speaking. Trying to play my acoustic guitar is funny all in all. My question that won't be answered for months is, will I play like I used to or have to relearn how to play all over. Seems like my right side is almost there...

At least my disability stuff is getting sorted out. I was worried they needed more info and or proof of my change of address to get my march check, but they called and my account manager had entered the address incorrectly from the address update we faxed in. Thank goodness she caught that and isn't going to make me jump through more hoops to get a check out. If you've read earlier installments, you know the payments have been a real source of anxiety at times in the past. Of course until we actually get the march check its not very helpful, but I trust they'll get a check to me.the fact they can't do direct deposit is crazy, but I suppose they'd prefer to be late and not pay someone who might have passed...? That's my guess anyhow.

I wish that were the least of my worries - and that so many people weren't passing from cancer related or other illnesses. Just weird how the past month seems to have news on Facebook every other day. Maybe it's just that time of year, but make sure you tell your loved ones how much they mean to you - do it for me if you're not feeling it, let silly things go, and hug each other.

From invalid to dependent to Gets His Own Cereal!

Okay so the uncertainty is just how far I'll recover - y'all best hope it's all the way cause I plan to drive my car again!

If anything, just so I can do one of my favorite solo outings, like taking my e reader to an Indian buffet.

On the medication front I'm down to 1 steroid a day and that's great - ki stopped the zombyfying seizure pills cause I wasn't showing signs of seizure and the meds were leaving me in a really bad state, and I really needed to feel mildly better, not like my future was going to be dominated by this awful haze. I only remember taking them a couple of times, and then just setting them aside, but he says I took them for 5 days in a row. The nurse practitioner we met with said Dr Curti advised we keep taking them just in case but since Dr Ki was there and was the one who decided I should stop, she totally agreed and wrote a script for some Trazedone at our request to help me sleep better (my sleep has been sporadic at best) which I really think is funny as I'm taking half the anti depressant dose for the good sleep side effect.

Tips for sleep aids when you're a big n tall person :

Space the pills out rather than taking them all at once. That way you don't wake up 2 hrs later shock awake and super angry cause you know you were finally sleeping and you also know you won't sleep again that night. I can't emphasize this approach enough... Oh it stinks to realize you finally slept and then be shock awake again!

Oh and with less steroid intake, my body is taking over with adrenaline production and I'm working a lot to get my left coordination back (it's pretty bad right now) and we're doing a few practice walks each day.

It's amazing to have Ki here helping me learn to do things like walk safely - he knows how to provide support physically without doing the walking for me. It's so weird to not be able to walk on my own and such.- I'm kinda terrified that I won't be able to play music at the same level with my left hand... But I'm playing wii lego Star Wars which is helping and plan to see what i can do with an acoustic guitar today - freakin weak left hand, at least I can hold a cereal bowl!

You know this is such uncertain territory and in the last 3 weeks I've received the sad news that other friends of mine passed from their cancers, so I know I have some luck to still be here, and hopefully my progress will go beyond just being self sufficient in acquiring my breakfast needs, but will include traveling. At least I can speak again... Well that's a perk in my book if not in many others' right?

Now coming to you from Corvallis

Wow, having brain radiation just isn't much fun. The process wasn't so bad, it's the month long hangover that bites.

Ki and I are now living in a home here in Corvallis and I'm slowly improving in terms of being able to speak and get around the main floor.

We have had extraordinary help with the move from great friends in Medford who helped Ki pack and clean our home in Talent as well as get our stuff into the new place here in Corvallis.

My mom and sister left for AZ a couple of days back and they were super helpful. With them here, Ki could keep working while my head is super fuzzed and I'm learning to kind of walk again. A fall at my height could be an issue. Thank goodness that wasn't added to the passing out drama I had to add to the last month.

I learned a friend passed thus week from cancer and want his partner to know how sorry I am for that. news. It gives me more incentive to try and get over this obscene hurdle I have and to do what I can to keep recovering.

Tomorrow we see my oncologist and will hope to get my EEG results. Which since I stopped taking the anti seizure meds will hopefully be normal... Those pills really left me feeling like crap so fingers crossed I did the right thing.

I'm really sorry to not have been very responsive to email, voicemail or texts lately but I have a difficult time tolerating much communication as I grow tired quickly and such. Know that I appreciate and hope to be able to have visitors sooner than I feel like right now.

It's amazing to be able to write and post something coherent. I promise some humor next time.

Hell of a week but still here

This is just a quick update

I finished the 10 full head radiation treatments last week on Wednesday. This week I passed out during my CT scanned and just had an EE G to check my brain as the doctor was concerned that I might have had a seizure during my scan

The good news is that I recovered very quickly after passing out so it's quite possible that I did not have a Seizure and the episode was related to tumor positioning in my head.

The real good news is my CT chest and torso scan did not show any growth in the cancer from before. So now we will wait 2 mos. and get a fresh MRI to gauge the radiation's success and I will sleep a lot.

Resting here in Albany, soon Corvallis

Today is my first break from having my head completely bathed with radiation, and I guess it's going to take some time for the swoozy ringing to chill out. My balance is pretty off, so it's mostly bed rest and such. Only hurled once... Hopefully that will be isolated, as it was brought on by moving my head to lay down too quickly.

The other news, is that Ki and I were approved for a house in Corvallis, and will be trying to get over there in the coming days. With the house in Talent (so or) being mostly ready after a long weekend last week, Ki will be doing some long weekends with the help of our extremely generous and loving friends to finish packing and bringing our things up north. The apt here in Albany just isn't set up ideally for me to recover as well as for both our cohabitation needs.

My scalp is starting to really show the effects of the radiation, and we expect my hair to be gone for a while in the coming weeks. Hardly a big deal in the scheme of things. What I'm really looking forward to after my balance returns, is for the ringing in my ears to stop. It sounds like a bad use of a ring modulator being applied to what I hear, and if I didn't like it in old Tony Iommi guitar solos, I hardly care for it now. Imagine, well...any song being doubled with a cracked set of Caribbean steel drums... Lovely.

Well here's to good night's sleep once I get my head down, and increased mobility.

A Salute to the Fleet

As in bottle of saline solution water for my mid week small success (well not so small...). I have to say major narcotics are super essential at this moment, but I wish they could be combined with something so as not to freeze up my plumbing so much. Likely my system just isn't used to having theses pills. Someone in a lab doing non-essential research get on this and you'll make serious dough.

Oh and no more fruit punch flavored water drink ever again... And I mean ever. It just confuses the question regarding regurgitated content, that's enough on that topic.

As for my radiation treatments, I've made 5 so far. With 5 more through next Wednesday (again no weekend zapping to give my grey matter a slight rest). I've had continual struggles with varying degrees of either losing consciousness, or being somewhere in between with standing and laying transitions, but that seems to be slightly improving. The rear location on my head are causing me this difficulty, so I'll expect that to reduce as the radiation shrinks the tumors.

I'm sure grateful and lucky for my support. Ki is just taking on so much, and my Mom, and siblings are making it so he can, while many of our friends are going to be helping him with packing, cleaning and research/house hunting in the Corvallis area.

I'm going to take a quick nap hopefully and relax now.

Sunday Night Before Daily Dosing Begins

I'm happy my Mom, Sis and Brother arrived safely today. They had a lot of bad ice n snow on he way (liz and Mom met Tres at high mother in Law's home in SLC).

Tomorrow we'll drive up to Portland where we have an apt type hotel lined up for the week downtown. Ki and I decided it was best to save his FMLA time while the family is here, and can drive me to and from the hospital. He'll be able to stay up there except for Tues night as he's on call.

Then he and either Liz or Tres will go down to Talent to get the house packed up with the help of our wonderful friends. Over the next coming weeks we'll have to find a place here in the Corvallis area (likely with some help from a couple of our aforementioned friends... And my sister as I don't know what my recovery time will be). I have to admit that I can't take as active a role in the process and that's hard. Thank goodness we have such supportive friends volunteering to help!

So I've learned a couple of things... It freaks me out that my entire brain is being radiated, rather than having 4 spot radiation targets. But since the 4 we saw on the ct scan aren't in one spot it doesn't make sense to not get the whole area affected, and this ideally picks up spots which may not have been counted etc. Fair warning... If I stare long and intensely in a few mos. at you and make you dizzy, start to spew secret truths, or dance in a manner otherwise unbecoming to you general mood, I'm on the record as saying no powers have been acquired.

Also - freshly radiated brain with little food intake causes any image of food to seem like the ultimate in yummy gotta have now decision.

Advice? Don't eat it... Soups, lightly sautéed veggies, zero cal vita water and small amounts off ice creme are much smarter. This is due to the pain meds blocking normal potty movements... And it ain't fun to indulge if its building up in your gut while simultaneously dealing with brain throbbing cancer bits, yet fearing to take the pain meds as they've temporally blocking my insides.

Thank goodness for my partner Ki knowing ahead of time to give me stool softener and the special D.O. technique to help bound up insides start to move and ... A Fleet Enima!

This is hardly the big event of the moment, but it's a small victory, and I'll take it!

Radiation treatment plans

So the schedule is in place for my radiation treatment.

Starting today (Thursday), I will have a treatment for the next 10 biz days to radiate all 4 of the mets in my head (the 3 smaller ones and the larger one with the bleeding).

Kind of quick, but I'm happier with that plan.

If after 2 mos an MRI shows remaining mets, I'll go under what they call The Gamma Knife which is a tool they use for brain work under 2mm's.

I'm pretty dizzy and using a wheelchair to move more then 20 feet. Hopefully the radiation will be as successful or better than the treatment I had last May on my groin.

Ki is looking forward to seeing me bald, but wig suggestions are welcome :)

More details to come and a clever name for my new radiation oncologist as Dr Soultrain isn't working on this round.

Bad news with vision flickering

Quick update - we discovered 3 new cancer mets in my head. One in the back lower right which is bleeding and causing pressure and pain. The pressure is making my eyesight wonky, so forgive any sfvvgnrnj odd words which might slip in.

The other two (all three are relatively small), are in the front right on agitator more internal m the left lone.

Ki came down and we're heading to the Portland hospital for addition on the bleeding tumor this Thursday - not certain if we will start right then or get fitted with a head assembly that will need to form for however long. I'll see if they can give it a paisley look, but they might be busy...

From what I knew starting last Saturday, I had eaten bad yogurt casing me to vomit all day long. This dehydrated me significantly enough to need to go to the ER on Sunday. Ki asked to get a heat CT scan done but they didn't think it needed, or it wasn't communicated (he wasn't here yet).

Monday I was to follow up with my reg doc, but he was full and by the time we arrived he I was thinking we would just go to the ER. I passed out for a while in the multiple eg exam (sitting, standing, lying) and by the time I came to, my reg doc was in charge, and apparently we had a fire truck and an ambulance there (I was informed the firemen were nice to look at... Alas lol).

So back to the ER and Ki was already racing down. Steve had taken me on Sunday, and Daniel took care of me on Monday, which really made things insanely helpful. Daniel walked out of the room and told the staff, that Ki is a dr and wants a head CT scan. After the scan we ran an MTI to confirm the tumors were melanoma and that's where we are...

My family is coming up on Friday Mom Sister and Brother), and we plan to start the process to move me up north. We really didn't expect anything like this, but it's just part of the deal. I've been feeling that I should be living with Ki anyhow, and our wonderful friends are offering to help. The open question now is if this is a speed bump or a quickening of symptoms. It's possible these 3 popped in my head back after the initial IL2 treatment and having an edema (bleeding) just is part of Mrlanoma. Well know more after radiation and the follow up later this month.

Finances, Vision and Weighty Matters

The big wait is finally over, and holy schnickess Batman.... the last 5 weeks have seemed like 4 months!  The life insurance disability was finally reviewed by the medical board, and after a week's wait for a supervisor's signature, I was renewed again through August of this year.  If I'd just read through the damn paperwork rather than dropping it off incomplete at the clinic in Portland, the process likely would have been finished prior to the holidays.

Thank goodness my landlord is understanding and was able to let me be 3 weeks late on rent... I really don't want to get behind on my basic day to day bills.

In general my health seems to be holding, although I've been experiencing some flickering vision in my lower right view that seems to be managed somewhat with Gatorade.  This leads me to believe my electrolyte levels are compromised due to excess bathroom use.  Who knows, but it could also be due to the allergy medication I'm taking so my nasal passages will stay open as I'm picky about my preferred method of oxygen intake.

I'm also hitting the gym about 4 times a week to try and drop some pounds as I'm super over the fat clothes which make up the bulk of what I can wear at the moment.  The downside is that I'm motivated by fruit pies and doughnuts rather than veggies and juicing these days.  That's gotta change.  Hopefully my general state of fitness will improve, as I've been prone to dizzy spells quite a bit, but fortunately I really know the signs and haven't passed out anywhere... (I went through a period of passing out in my mid teens for various reasons that aren't really that interesting or diagnosed fully).

Hopefully my next scan will show the same story (planned for the 25th of Feb pending insurance approval).

In the meantime I'm looking to keep increasing my physical activity, and change my dietary focus in addition to practicing and playing more music.  It would be a shame if I didn't manage to capture some of my musical ideas considering I still have the bulk of my studio gear.  Although I need to sell a couple of guitar amps to pay down a credit card.  My pristine condition Egnater Tourmaster head and my pristine condition Fender Twin amps.  Looking for $1000 each.

Wish me luck and if you know someone interested let me know...