February 24, 2008

Keep your expectations in neutral.

That's what a friend of mine told me a while back and it is some of the most valuable advice I've ever received.  Like other tidbits of wisdom, however, that doesn't work unless you practice it; a good example would be the Amgen event yesterday.  
When Amgen first contacted me about representing the local cancer community at the start of Stage 6 of the ToC I was very excited, not for my own in this case dubious celebrity (although I'm not exactly a shrinking violet) but for the opportunity to represent my fellow cancer survivors in the Santa Barbara area.  I didn't know what they needed me to do but I made the effort to be there, which was not easy, and was happy to make the effort.  Needless to say at this point, it was less than I expected and I felt slighted in the end - enough said.

Now I know what you're going to say, and the worst part is you're right; "Keep your expectations in check, Tom."  My feelings were hurt and that may sound silly, but I take my responsibility as a survivor very seriously - again, enough said.  This was a good reminder of a great lesson.  I'm very good about remembering this with the doctors, etc., which is really where it counts.  The worst thing I can do is to expect or anticipate what type of report we will hear, especially over the last six months.  Although we go in with a positive attitude hoping to dodge another bullet and get good news, when we go to the doctor I think we keep our expectations in check.  It sure would be nice to get some definitively good news for a change, though.

We have an appointment with my surgeon to discuss the wound situation this week, hopefully we'll turn the corner with this appointment and the new antibiotic will be the right one to fight the infection - that's what I'm expecting, anyway . . . I know, I know . . . 

February 22, 2008

Tom's Big Day Out

Yeah, Buddy; I was at the ToC time trials in Solvang to see Levi Leipheimer not only win the event, but retain the yellow jersey for another and quite possibly into Long Beach for the second year running.  
Not only was the day a success for Levi, but for me as well in that it was my first adventure out of the house other than back and forth to the hospital or doctor appointments in a long while.  It felt really good to be out in public, even though I was a bit self-conscious about my wheel chair; I'm walking very well these days, but I think I would have been too fatigued too soon without the chair.  I have to swallow my pride for a while, I guess.

As far as the impending surgery is concerned, it has been cancelled for now.  That's a double-edged sword for me in that I'm really glad and relieved to not by looking at another week in the hospital between the procedure and the follow up. However it also means that the infection has not cleared up enough to where it would be worth while to do the procedure.  The closure of the wound is pointless with the active infection because it will look for and find another way out, which would cause more problems than just leaving it the way it is and waiting to see what it does with the new antibiotics that I began yesterday.

What a soap opera, right?  "One of these days I will write, "Today I got on my bike and had the best 25 mile ride!"  That day seems further and further away at times.  

Tomorrow morning I will help to start off the ToC Stage 6 in Santa Barbara by representing the local cancer community for Amgen.  As long as I don't take a header off the edge of the stage it should be fun!    

February 16, 2008

Full extension!

I woke up on Thursday morning to find that I had full extension of my left hand fingers!  In my world that's huge!!  It figures that the one night I don't wear my wrist brace I end up with that kind of result, right?  
The current challenge remains to be the surgical site, which refuses to heal.  The plastic surgeon was not happy with what he found when we saw him on Thursday and in fact has scheduled me for an additional surgery on the 23rd to do more repairs to the site.  He did a culture of the site for analysis and that will dictate our course from here.  The problem is that if there is still infection inside my head it will need to find a way out, which makes it impossible to completely close the wound.  That's probably more information than you needed or wanted, but that is the status currently.  I've had a number of people ask when I will resume my chemo; at this point we are so far away from that due to the surgeries that I have no idea. 

That  brings us to today; the fingers are moving, I'm sleeping very well, I'm regular (again, too much information, right?)  Hopefully this week will bring good news on the incision condition and I won't have to go under the knife again - keep those fingers crossed and those prayers coming!

February 12, 2008

It's alive!

My left index and middle finger moved today!  A lady cut us off in traffic and as if by magic my left middle finger shot right up . . .   
No, really, though, it's kind of a big deal in that I have not had any movement at all up to now.  It lets me now that I'm on the right track and that the rehab work I'm doing is paying off.  Anne and I have been going to our community pool the past few days and doing some exercises, sitting in the jacuzzi, and enjoying the sunshine and each other.  Sometimes we forget how funny we are with each other, so this has been a good opportunity to get re-acquainted for us.

In home rehab is scheduled to start this Saturday, so that will be good in addition to what Anne and I are doing.  All in all things are moving in the right direction and I'm reasonably pleased with the progress I'm making . . . I say, "Reasonably," because it will never be fast enough for me.

February 9, 2008

I'm going to start calling my surgeon FIAT

Fix It Again Tom. I've been back in the hospital for the past week while they closed the surgical  wound on the top of my head and put me on stronger antibiotics for the infection in my brain and on the wound itself. Without going into the gory details, they opened my scar up and used the existing skin to jigsaw puzzle the area together; Boris Karloff has nothing on me.  Sorry, again, for the uncomfortable silence on the blog, but that's the way it goes sometimes, you know?  There was no time to post anything prior to admission to the hospital.
I'm recovering at home now with outpatient physical therapy beginning today from Visiting N urses and will hopefully be back in rehab within a week or so.  My arm is still virtually useless for now, but my leg is coming along nicely.   I'm very glad to be home.  I'll try to update the blog on a more consistent basis, but can't promise anything.

The big news is that AMGEN, sponsors of the Tour of California, have asked me to represent the local cancer community at the start of the Santa Barbara stage on February 23, 2008 at 11:00.  I'm honored to do so and will try not to trip on my way up or down the stairs!  The time trials are the day before in Solvang, so it should be a fun couple of days.

Time for my nap, so I'll check in soon and as always, I appreciate your concern and love.