May 21, 2008

another tumor in the news . . . .

My condolences to the Kennedy's today; but I'd be lying if I said I was not, "glad," at the same time for how things turned out.  I knew when the news described the circumstances of the seizures that the Senator had a brain tumor, and probably a glioma of some sort, as it  just sounded too familiar to not be.while  I would not wish this on anyone if any body has to get it, let it be someone who is high profile and who will draw attention to it; ass we've seen so many times before, it often takes the high-profile cases to put the spotlight on the issue (such as in the case of Christopher Reeve with spinal cord injuries.  I am really conflicted about feeling this  way, but it seems that it takes a circumstance like this to bring attention to the more, "rare,"conditions such as brain  cancer.  It raises awareness and also helps  others similarly challenged in a way that news of Tom Whittaker's tumor never would or could.I know that good things will come from this terrible news and that is encouraging in the long run, in the short term if somehow the family reads this; you are not alone and active survival is a choice  I think I can speak for all brain cancer survivors when I express a  selfish hope for proactive advocacy on the senator's part.  reach out for help/hope from the cancer community and you will be taken care of.    Senator, God bless you and your family in these initial very  tough months ahead and good luck in your fight LONG TERM.

as for me, I'm feeling well, although I did fall a few times yesterday for no apparent reason other than just losing my balance; someday my tail bone will not be black an blue! there's a pretty thought, eh?  I've got at least another week of HBO, treatments I would think, but we do see positive signs of healing.

May 14, 2008

Next steps begin tomorrow

I told Anne that I felt like a dime store hooker yesterday because I spent so much time on my back - (a comment she found no humor in)  first with HBO treatments and then I had an MRI scan which  revealed about 1-cm. of growth over the last month, so it grew through the last chemo drug again. Therefore I am beginning "new" treatment tomorrow using CPT11(Irinotecan) one that we used in conjunction with Avastin a while back.  I can't use Avastin right now because we need to get the wound healed and it would be counter to that effort in this situation.  

We also heard back from UCSF  this week and they are recommending staying the course with chemo, HBO and no indication of surgery necessary at this time - good news!  HBO treatments are going very well and they are seeing definite signs of healing - more good news!  I've fallen as few times over the past week, the well-documented bike incident and then again yesterday in front of the restaurant we had lunch at.  I just simply lost my balance; after catching my toe on the step I did a spin and drop, skinning my knee and elbow on the pavement, the only real casualty was my pride, though.  Yes, I'll be more careful - thanks.

May 10, 2008


I just did ten minutes on the spinner without the crash and burn! It was about all I could do stamina-wise but it  really felt great.  I'll get on again tomorrow, and the next day, and the next until I'm feeling stable and strong enough to try the road out; (I will take it slow, no worries).Hope you're day was good, too.

May 8, 2008

And I was feeling so energized after the oxygen treatment yesterday........!

I felt so exceptionally energized after the HBO treatment that I couldn't wait to get on the spinning bike in the living room, so I climbed on  and promptly fell off with a huge thud, I was okay, and yelled out that fact to Kelsey(14), who was home alone with me.  She came tentatively down the hall as I again reassured her that I was okay.  I'm so proud of her strength because she had expressed to Anne some fear about this scenario a while back and showed no hesitation when push came to shove.  She was very sweet and calm, asking me if I wanted help sitting up, as I laid flat to catch my breath. she knelt down and took my hand in hers, placing her other hand behind my back,assisting me up into a sitting position and confirming my safety, reassuring herself in the process.  I'm so very proud of her for overcoming her fears and giving me the support both physically and emotionally to not worry about her strength, which I never had reason to doubt to begin with, but I feel much better and reassured today after her trial by fire, as such; she showed her true colors and strength and I told her so after, as did Anne.  That's my strong girl!

May 7, 2008

HBO treatment

I did my first HBO treatment this morning 5-7-08.  There is still some question about benefit and it will take ten days or so to make a call on that, and I've got some legitimate concern that this may assist tumor growth in that it might be building blood supply to it/them, and the doctor can't say for sure either, which is a little scary, but there is risk in every benefit no matter what we do, so we'll see in a couple of weeks and go from there. It's a few hours after the treatment and I've got a lot more energy all of a sudden, which is a nice side effect, for a change.  no word from UCSF yet.

new treatment today

Good morning.   Hope takes guts, and that's something that any cancer survivor must have in spades; I will embark upon a new course of treatment today to address the surgical wound from September '07 when I begin the HBO treatments.  I will go once a day for at least a couple of hours and hopefully no seizures, the possibility of having one increases during the treatments due to the increased atmospheres in the tank.  I will take a picture and post it for those who are curious and will answer all questions I can for those contemplating the same treatment; just email me and I'll do my best to give you a personal experience answer or try to direct you to an appropriate resource for same.  

Still waiting for an answers from UCSF as to what they want to do; the doctor is supposed to be back from his conference on 5-8, but his nurse is hoping that he will get back to me today as he saw the films before leaving on 4-30, but evidently did not feel compelled to call.I know he has surgery scheduled today, so maybe I'll her from him.  The toughest thing is the wait, as most of you realize.  Keep your fingers crossed and think positive for me, please.  Thanks.

May 4, 2008

Great day yesterday

I woke up very early and got on-line to catch up on emails and do a little work in the quiet hours of morning. Business remains strong, but it's all about keeping fresh leads in the pipeline, which is difficult without driving to press some flesh.
then got going looking for a spinning bike for the house as I'm tired of wrestling with the indoor trainer in order to drop the gut which has developed over the last couple of months of virtual inactivity on my part, I've certainly seen a unwelcome change in my body shape and weight distribution , and I realize that is part of the whole thing, but I'm not satisfied and will commit to at least thirty minutes each day on this unit, although ten minutes damned near killed me at rehab the other day! Here is the unit I'm looking at locally from


The next time you see this unit it will have a fat cyclist on it watching the bike races on the Cyclism Sundays show on the Vs. Network and imagining himself in the chasing Peloton and sucking air and gobbling Sport Beans from Jelly Belly for electrolite replacement.

I'm very excited about this purchase and what it will do for my overall health if I'm disciplined with daily training.

Back to yesterday: I got out of the house in the afternoon and had great time with two buddies of mine, Alan and Rick, going to see Ironman at our local theater in Carpinteria - highly recommend it for a fun watch, great movie. after that we went to see an old friend of mine, Jessica Pintard, at her new restaurant, Cork Tree on Linden Avenue. It was nice to see her and her place looks great, a real upgrade over the previous Coffee house that was there, Cork tree is a restaurant/wine bar and they put a lot of work into the remodel/redesign the place was packed, too, which is always good to see. Jessica is the widow of Eric Pintard, a local hero and cancer warrior who was the first one to reach out to me with a positive cancer survival message. It took a while before I was ready to listen but once I did I became his biggest fan, after Jess. Jessica set the bar high as a warrior, as well, staying by his side and supporting Eric until the end. She is bright light always ready with a smile and hug andI feel blessed to have her in my life. Anne and I have not made time to go in for dinner yet, but we will soon, perhaps this week.

One of the reasons that we have not gone into her place or many other public places is due to my own lingering public discomfort. I still get overwhelmed/confused pretty easily and worry about that being perceived by whomever I'm talking to, I don't like to have or show any weakness or confusion. but that's how it is for now and I need to deal with it. My friends realize that, so I don't know why I'm so self-conscious, other than for my own pride's sake. I'll get past it soon.

I'm, "looking forward, " to talking to UCSF this week and to getting on a treatment track that everyone is on board with; will blog again when that happens . Make your week a good one.