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!