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.