March 28, 2008

Today's the day!

Well, actually tomorrow, but we drive down to L.A. tonight to stay at the Embassy Suites North at LAX because we can park the car for the whole time for next to nothing and take their shuttle to the terminal for our 10:30 am flight.  We'll get into Honolulu at 1:30 pm, so we still have a lot of time once we get there on Saturday.  Anne's brother and his wife will be coming in next week on Wednesday, so we'll get some time with them, as well, which will be great!
Brian just finished a big addition to his house, so I'm hoping we will go there either Saturday or Sunday for dinner . . . or we may just show up drooling at their front door; Brian makes a mean bbq chicken!  The weather looks great; in the low 80's for the foreseeable future each day and 60's at night, just perfect.

I'm going to take lots of pictures of my old haunts, look up some old friends, etc; who knows when we'll get back, after all!  I wasn't in but 2 or 3 pictures on our trip last Summer, so I want to be sure to get more pics of all of us this time, and yes, I will keep my hat on so as not to scare the kiddies.

I'll not be taking the laptop, so no new posts for the next week or so.  Try to get along without me, okay?

March 27, 2008

You folks go Hawaii yet o what?

Yeah, bra, we go stay at da Outrigga Waikiki on da beach and grind Dukes buffet in da mornings.  Den we go beach all day an' go sleep in da aftanoon befo dinna time.  Grind 'em again and go sleep afta dinna den get up and do 'em again da next day; oh da hosh, yeah?
See, I told you I could speak Hawaiian . . . . or at least pidgin english!  We're getting pretty excited about our trip.  The countdown has definitely begun.  I'll change the recording on the phone and put the auto response on the email tomorrow morning and that's that.  The web cam at the hotel has shown beautiful days al week.  If you'd like to try to spy on us during the week, her is the address.  We shouldn't be hard to pick out as I don't think there will be too many, "Zipper-Heads," either by the pool or on the beach; we're a very exclusive bunch, dontchaknow (that was for you, Kim).   Here is the address:    -   then click on webcam and check out the pool, beach and Diamond Head.  Also look for the family of turtles that hangs out in the reef shallows in the afternoon in front on the hotel . . . ah, paradise.

Before you ask, yes, I am keeping my expectations in check!  It will be a great trip no matter what happens along the way and I will take plenty of pics to share.  I will endeavor to roll with the punches, which has never been easy for me, but I've been working on it quite a bit lately!

March 24, 2008

I don't want to jinx it, but . . . .

It's probably bad mojo to say it, but I remain amazed at our good fortune lately.  
I've managed to stay out of the hospital for almost two weeks now and we're totally psyched about Hawaii at the end of the week; yes, the end of the week.  This time next week I'll be cruising to the coffee shop near the hotel to pick up my cup of joe, then wading through the surf line (up to my knees only, I know) to enjoy the morning while Anne and the girls are sleeping in the hotel rooms. Then we'll line up for the buffet breakfast at Duke's by about 10:00am; now that's living!

The girls (Rachel included) were all in the kitchen last night talking about the trip, where they want to go eat and, most important, shop.  They really deserve this trip as they've been so brave through all that's been going on since September of last year.  Anne especially deserves her pink beer and Maui chips at the Royal Hawaiian Hotel.  I don't know what I'd do without her.  There are not many people I know who could rise to the challenges she has had to face, both real and imagined, with the grace she has shown.  I'm hoping that we can get some quality time on this trip - I'm sure we will.

I spoke to my brother, Brian, yesterday and asked him to see if he could scare up a wheelchair for me, as my stamina is still not the best and I don't want to hold the girls back from walking around at night, etc.  I've been walking around our park quite a bit and it's getting better, but I still get tired fairly quickly, so the wheelchair will just make it that much easier.

Overall I'm feeling great.  I feel some fatigue most of the time and I sense some cognitive slowness, but it's lessening as the days pass and I become more active.  The physical slowness and little instability that remains is annoying, for certain, but I'm seeing that lessen as time passes.  I remain convinced that is one of the keys to a swift recovery, staying active.  I'm still napping each day, which is a good thing I guess; good that I'm able to do so.  

I know that we'll have a great time in Hawaii and I'm looking forward to it.

March 14, 2008

There's a first time for everything

I had my first ride in an ambulance on Wednesday due to a fairly large seizure in the early afternoon.  I didn't lose consciousness and I remember the whole event, but it was scary, nonetheless.  I felt my eyes shifting back and forth rapidly.  I then felt my neck stiffen and my hand begin to curl.  I had enough time to call for Anne, who I call for help often, but she said this time sounded different, so she came quickly.  She held me during the event while calling 9-1-1.  I stayed conscious the whole time and remember breathing rapidly.  My speech slurred and my left hand, arm and leg were foreign feeling to me.  For someone who has not had a seizure before, it would be terrifying, but I have had so many over the past seven years ranging from a slight pulsing dizziness to this one, which I would consider the largest, while it is still disconcerting, I know that if I can stay calm and breathe through it, I'll be fine.  I'm told by my docs that they are not doing any damage, as such, just reminding me of the presence of the tumors, which I kind of resent because I don't need a reminder; gentle or otherwise.
The ambulance came, they loaded me into it and took me to the ER.  Within 30 minutes my hand and speech were normal and I was feeling clear-headed and communicative.  They did a CT scan and some blood work on me and I was home by 6:30 after arriving at 2:30.  
The girls were concerned, but not overly so because we've talked to them about the possibility of being with me when I have one and what they can do to help me and get help for me.  Kelsey asked Anne about me having one in Hawaii and Anne told her the truth, it might happen and it might not, but to stay calm and call for help if it does; there's not much else we can do than that.  They did prescribe an adjunctive anti-seizure med that will hopefully prevent the big ones from breaking through the first line of defense medication, so that's good.

We saw the plastic surgeon yesterday.  He didn't close the wound up, but did say the we'd take another look at doing so when we return from Hawaii; we're trying to avoid a larger operation that would involve taking a strip of muscle from my back to close the hole in my head.  That's eight hours of surgery I can do without, I think.  I'm confident that there's another way and that he'll find it, possibly with the help of UCSF, which he's very open to.

For now, all is good.  The official countdown to Hawaii has begun; two weeks from today - none of us can wait to go.

March 12, 2008

Pop the champagne, mother!

So far this week has made up for a lot of bad news with good.
We met with our infectious disease doc yesterday and he feels that there is no infection present anywhere, period.  I just about kissed him, but Anne was there and she is insanely jealous, so I kept my kisses for her; after all, it was our 19th wedding anniversary.  As I say when she's around and we're asked about the length of our marriage, "15 of the best years of my life."  It loses something on paper; it's all in the delivery.

What this means, hopefully, is that my plastic surgeon can close the wound on the top of my head once and for all with a couple of weeks buffer before we go to Hawaii.  In the big picture, of course, it means that the infection that nearly beat me is now gone.  Good news . . . finally.

I saw my Ophthalmologist today regarding my right eye CSR condition ( 
and he, too, pronounced me healed, I have been aware of improvements in my vision in the last few weeks and was very happy to get this news confirming what I believed was going on as far as healing is concerned.

My walking, balance and overall mobility are all improving, as well.  I have to work on my left arm and hand because the shoulder is still very painful; there's nothing like climbing out of a warm bed and icing it each morning.  But, hey, at least I'm getting up.

We're going to go for a hat trick (no pun intended) on Friday with the plastic surgeon and continue our good luck streak; wish us luck!

March 10, 2008

Here we go again . . .

Well, Sunday 3-2-08 was indeed beautiful, Tuesday 3-4-08 not so much. I threw up first thing in the morning . . . truly a "Technicolor yawn," and four more times throughout the day, including once in the hospital; that's right, the hospital again. The fifth time was right as my surgeon walked into the ER room, to which he replied, "That's okay, I have that effect on a lot of people." To know how funny that is, you'd have to know this guy, but it certainly lightened the moment.

As it turns out, it was probably totally unrelated to the tumor or the infection, but better safe than sorry and I'm glad to know that my docs will err on the side of caution in situations such as this. They did four different scans on me; MRI, CT, and two different types of bone and infection scans. This time there is only good news because the only place that showed any kind of active infection was at the top of my skull where we already knew one existed. That area is looking better, as well, so it appears as though I have turned the corner! It's great to be able to pass along some good news for a change; I felt bad about only having bad news to report, which is probably why I haven't been as active on the blog as usual.

Our oldest daughter, Caitlyn, was in the National Cheer Competition at the Anaheim Convention Center over the weekend. I got out of the Hospital at 3:00 and we headed down to watch our Carpinteria Warrior cheerleaders and song team place 5th and 3rd nationally, respectively. That is 5th out of 25 in her cheer division and 3rd out of 16 in song after pre-qualifying in regional events. I'm very proud of her and, perhaps more importantly, she and her fellow teammates are proud of themselves; they worked very hard for this and it has paid off in pride points.

This week we have an appt. with our infectious disease doc and one with the plastic surgeon to check on the incision infection. I'm also going to start out-patient physical therapy at RISB; I've been getting therapy at home since I got out of the hospital in February, but I think that using the institute's facilities and available equipment will speed my recovery.

Not much longer until we're Hawaii-bound! "Aloha O'e," although the correct term may be, " Aloha, OY!"

March 2, 2008

help a brother out . . .

Good morning!  It's going to be a beautiful day here for me and after all, that's all that really matters; right?  I've decided that it truly is all about me; so ask yourself, "What can I do to make Tom's life easier?"  The best ten answers will be chosen at some time and the winners notified at some point.  How about that, eh?  I'm making it easy for you to make it easy for me . . . cuz I'm a giver; give, give, give.  It's just the kind of guy I am!
Okay; no more coffee for me today.  

It truly is a beautiful day here, so I think that Anne and I will go the pool/jacuzzi for a bit.  I can't go under the water because of the incision remaining open . . . still; nor will I be able to go in past my knees in Hawaii at the end of this month for fear of, "Catastrophic results," according to my plastic surgeon.  "You don't know what those fish do when we're not looking."  So I guess I'll have to unreserve my space in the surf with my Latte each morning for this trip - next time.  Doesn't sound very manly, anyway.  I'm getting two scans this week to see where we are on the infection; a CT scan and MRI on Tuesday should give us an idea of whether or not the infection is still active as I have been on the new antibiotic now for a week or so.  I went in on Thursday so that my plastic surgeon could remove the staples and replace them with stitches partly to clean up the wound and partly to guarantee clean scans.

We've got a cheer competition coming up this weekend in Anaheim at the Disney convention center.  Caitlyn is competing with the high school cheer squad and dance squad.  This is usually a very fun event and I'm really looking forward to seeing her perform, as I didn't see any of her games this season because of all my medical stuff.  I figure on using the wheelchair to insure good seating . . . because after all . . . it is all about me.

I will post an update once we have the scan results, if not before.  Keep your fingers crossed and the fan mail coming.