Aloha - Tom Whittaker

As of Friday Oct. 24th @ approximately 7 pm, we have a new angel watching over us! Tom went peacefully into Heaven's gates as Anne guided him through. It was very important to Anne that those who knew Tom and loved him, knew just how peaceful his passing was. She asked me to share the experience with you, and it's taken me all day to sit and compose my thoughts. But please understand, these are thoughts she has relayed to me... I believe it is her hope that you will receive them as a gift... I know I did. She is truly amazing.

After 3-1/2 days of being in a deep sleep, Anne lay next to Tom, holding him and talking to him, and joking a little on the side. She was telling him that it was o.k. for him to go; that everything was going to be alright... but, that since she really wanted to be the one to be there with him when he went, that now would be a good time. With his eyes still shut tight "like a sleeping kitten", she told him she was going to count and he could go... with her hand on his chest, she counted slowly... " K, ready? 1... 2... 3... You silly, you didn't go" was her first response. Staying with him until mid-day, she left him to go see Caity and Kelsey off to their away-football game, and to walk the new dog along the beach in Carpinteria. She had told Tom she would be back to see him later, "about 6:30 - 6:45", telling him she loved him, she left him, sleeping.

Almost going home to change after her walk, she decided to get on the freeway instead and head back up to Sarah House. Walking into the room with her new dog Oliver in her arms, she looked at Tom and saw that he was looking right at her with one eye open. Understanding what he had done for her, she set Oliver down to "coach" Tom to his finish line telling him to "keep going", that his mom and her mom were right there waiting for him... "keep going... it's o.k... go... you're doing it..." and with his third and final breath, he was Home. She called me from the room and sounded elated and in disbelief, but in a good way... could I believe it?... he had waited for her!... and he went exactly how they had hoped!... with her and no one else, absolutely no pain, absolutely nothing but Peace. And did I want to come up... which I know in our language, that meant she wanted me there and right then, there was no other place I'd rather be. She assured me not to rush... my sweet friend. Stopping briefly for some yellow roses, and a chocolate bar, I made my way to Sarah House blasting MercyMe's "I Can Only Imagine". I found Anne in the kitchen making herself a cup of tea. We embraced and her smile assured me again that have one of thee most beautiful friends in the universe. It was a remarkable experience for me because I was able to grasp the beauty of death... I know it probably sounds strange. I can't explain it, but I truly feel I was given a final gift from this whole TomStrong journey...

Telling the girls that night was the hardest part for Anne. We all sat around the Living Room, sharing the experience, remembering, and feeling the warmth.

A Celebration of Tom's life will be held at Lion's Club Park, 6197 Casitas Pass Road, Carpinteria; Sunday, November 16th @ 1:30 pm.

There will be no services... just a trip to Hawaii planned for June 2009.

Aloha, and peace to all,

Andi Duffield

another stellar day

I don't think I've mentioned the fact that our family has been chosen by a local group, www.friendshippaddle.org, a group that puts out a mammoth effort to benefit locally challenged individual and families, such as  ours in order to ease the financial strains that always accompany these challenges. Our part is to field a team of paddlers to make the crossing from Santa Cruz Island to Holly Beach in Carpinteria September of this year and those paddlers will ask for sponsorships from both businesses and individuals for their mammoth effort.  please visit the website above for more info or to donate.   They had a BBQ last yesterday evening in our honor that was attended by 50 - 75 of the nicest people with the biggest hearts.  It was like a class reunion for Anne as she knew a lot of the paddlers from High School in Santa Barbara years ago (sorry, honey, not that many years ago, right?)

I felt a very real fellowship with the members of the group and I look forward to getting to know each one of them better as the process moves forward and the event draws near. The new pics are from the BBQ and were taken by Mike Long, one of the board members

what a party!

Great day last Sunday for my birthday, thank you to all of you who made it over and I apologize to those of you who did not know about it.  Anne got the the house all clean and filled with flowers and balloons with the girls' help and we ended up with close to 100 people at the high point.  there were many gifts and cards, both home-made and others.  also great food, wine, etc.  But the best thing was seeing friends from long past and present and watching them enjoy renewing those friendships.  It was one of the best days weather-wise in a long time, so most of the time was spent on our back deck, which is a scary thought since it is in need of rebuilding soon.  A couple of my friends are firemen, though, so I was not too concerned as I was sure that one of them might have the "Jaws of life," tool in their truck just in case.I will try to post photos soon. 

Feeling strong and steady since last Monday's chemo treatment, so I'm happy about that, to say the least.  Happy 4th in case I don't update until after that and keep those birthdays coming, I say.

ANOTHER BIRTHDAY COMING!

OnJune 29th , 1962, Mrs. Whittaker brought forth a ten pound baby boy; so my dad made a sign for the front yard which read, "It's a boy, 10 pounds - WOW!"   My mom slapped the doctor  and I peed on him for good measure , no pun intended. It was a tough room. In the ensuing 46 years I have been blessed with a caring mom and dad, a brother who, though we,ve had our rough times, I have always admired and with whom I now have the absolute ideal relationship, and a sister who made it through the" plain and dry" burger days and a lousy, but fruitful with offspring marriage  only to meet her Prince for the second act in her life.I was also lucky enough to meet Anne 20+ years ago who has changed and enhanced my life not only by giving me my two beautiful daughters, Caitlyn and Kelsey, but who makes me a better person when she's beside me.I know she wasn't planning on literally "In sickness and in health," to go to this extreme; but in sickness I could  wish for no more caring person wife and  I look forward to the "in health" clause to kick back in at some point soon. I was reflecting on my life the other day and decided that I have lead and been blessed with a great one with very few regrets and thats a good feeling to say the least.

another big day 6-22 Sunday

Anytime I can watch my daughters dance, it's a big day; but this year's recital, last weekend was especially nice as it was dedicated to our family, so needless to say I will always remember it as my favorite.  The girls, all of them, not just mine, did a great job.   Next day went in for Avastin/CPT-11 cocktail due to tumor growth recently so far with no side effects other than positive ones (increased strength, balance) no nausea to speak of at all - knock on wood.   I'm glad the temps in this area have cooled off, because that was no fun waking up for those few nights sweating my fool head off, on top of the fact that my own thermostat needs a reset.I'll be turning 46 this coming Sunday, so I'm looking forward to that and keep 'em coming, I say.  More events, benefits coming soon.

QUITE A DAY!

WOW; great  Father's Day yesterday!  We started the day off with 450 of our  friends at the Carpinteria woman's club for a benefit breakfast for my family and me -  good times, great people - very exhausting by the end, but I can't think of a better way to be worn out, right?  I know that a god time was had by all and nobody left hungry, that's for sure.  I'd like to thank all who organized end volunteered for the event.There was a detailed listing of volunteers on a tent card art each table, on the reverse side I wrote the following:

“Our lives are not determined by what happens to us,

 but how we react to what happens;

 not by what life brings to us,

 but by the attitude we bring to life. 

 A positive attitude causes a chain reaction of positive thoughts, events, and outcomes.

  It is a catalyst…a spark that creates extraordinary results.”

 

~Anonymous

On behalf of my family, I would like to take this opportunity to say thank you to the community of Carpinteria and all of our extended family members within it for their  assistance, love and support in our cancer challenge. I hope that this will be the first of many annual Father's Day breakfasts to support families facing similar challenges until they are no longer needed.We feel so blessed to have the strong support of our friends/volunteers who worked on today's event;  I pledge to keep fighting and look forward to helping organize next year's breakfast, as well.If a man's wealth was measured in the depth of the friendships he earns in his lifetime, I would be a millionaire, and so I feel like one today. Thank you and God bless you for your help and caring.

HAPPY BELATED FATHER'S DAY, Ian, John, Brian, Jack and Randy, and to any Others I missed yesterday either locally or ocross many miles; we're a lucky bunch, aren't we?!I  Pics to follow.  

it's good to be out and home

 nt for way too long and I apologize; but I have a "good" excuse; I've been in the hospital again for IV  treatments for the head infection that returned and was not being stopped  by oral antiobiotics.  I went in  a week ago today and got out on Friday, so not much time for updates, you know? I am sorry, though, Because I got an earful from a couple regulars who have been worried from my lack of communication, so I'm sure there are more of you  who feel the same way. I appreciate your caring and will endeavor to do a better job in the future.  I also got back on Avastin and CPT11 because  the tumor is growing again, so it was a productive stay in that way.  I think we got off message due to the non-healing head wound and I feel like we're back on track now.  IN the time I was in hospital, some very good friends of mine put together an event. hopefully those of you who live locally will attend to allow me to meet,or get reacquainted with, you and thank you.

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.

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.

SUCCESS!

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.

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!

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.

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 Craigslist.org

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.

No more bad days.....

I've decided that will have no more bad days.  Not that I've had any lately necessarily, but from now on they will range from good to great, period.  A good day may mean I 'm not feeling quite as good as the day before, but it will still be a good  day as long as I can wake up to it, stay upright and reasonably coherent into the late evening and go to sleep in my own bed that night.  Now if this sounds a little to simplistic or sappy, too bad.  It is all in the attitude one brings to the day.  It follows the old saying, "Any day above ground is a good day."   I'm not the first one to adopt this attitude, by any means, but I think it's important to either say it out loud or write it down to have it take on a life of its own and become who I am, to live it, as such.

On the medical news front; my still open 2007 surgical wound is acting up a bit and we're currently addressing that without going into detail.  I began my new chemo last week, as previously reported and have had few or no side effects from same.  I'm eating like a horse, sleeping like a baby, except when I wake up at 3:00 am like this morning, which I may pay for later today when I run out of gas; but that's ok.    Nothing from my surgeon at UCSF  yet - still at their conference. to return early next week. As far as I'm concerned I'd like to get the scar closed up and then treat the tumor with chemo, avoiding the long term side effects of another big surgery, but I'm keeping an open mind and will consider all options presented on a benefit vs. risk basis and go from there  

All I know is that Anne and  both agreed that yesterday was my best day yet because I got out in the garden to pick weeds and water; nothing like fresh air and sunshine to make it a great day.

Next steps

I started a new course of chemo yesterday, Carboplatin, after a week of waiting after hearing that the doctors think there may be a new spot in the right frontal lobe and collaborating on how best to deal with it.  My surgeon thought another biopsy would be best to identify what we are dealing with, which is the last thing I want at this point; nobody goes back into my head unless it's absolutely necessary, that really scares me for all of the possible temporary and possibly permanent physiological side effects.

A great nurse administered the treatment, Jen, who spent time at Dana Farber Cancer Institute working with brain tumor patients on treatments an trials. She was a wealth of knowledge and support as well as very compassionate, a great combination for a chemo nurse.  The treatment itself was fast after the labs came back; I slept well and am feeling fine today, expecting that not to change and if it does we'll deal with it. The only frustrating part of the day was finding out that my UCSF surgeon, Dr. Berger, will be unable to look at my MRI films until 5-8, I don't know why not, but that's the way it is due to delays on the local side in getting information to him in a timely manner.   Despite efforts to follow up with the various offices with the information, We can only advocate as strongly as we can and we then have to rely on their professionalism, which is lacking at times, but not usually, thankfully.   

So it's onward and upwards from here.  When and if it is determined that there is indeed an additional  spot, we'll deal with it; what else can we do but stay positive and focused on healing?

Control is an illusion

 Anybody who tells you their cancer is, "under control," is in denial, including me.  Cancer does what it wants, when it wants, to who(m?)ever it wants.  I think that we sometimes forget that cancer, by definition, is usually described as a group of cells reproducing out of control and unpredictably.

We were sitting in the Cardiac (EKG) waiting room ay Sansum Clinic on Wednesday when I felt a seizure coming on. It never developed to a full blown episode but would've been fairly large because it was coming from the right side; yes, I can tell which side, which tumor, the seizures originate from because they each have their own characteristics.  The ones originating on the left side are more mellow, a pulsing dizziness that lasts about 45 seconds and leave, there is seldom involvement in the extremities and there are no lingering after-effects typically.  The right-side- originating episodes are more physically violent and fully incapacitating with full physical involvement of the left side of my body with and some spill-over to the right side. It has left the left side of my face  not necessarily numb, but I'm not able to smile; which leads me to believe either the infection is back or there is some swelling in my brain again that's causing pressure on my facial nerves.  I had a pre-scheduled, well-timed, MRI Wednesday and have not had any definitive results from anyone yet.  My Oncologist says he thinks there has been some tumor growth, and there is definitely swelling in the tumor area; it's evidently difficult to differentiate between the two.  We're "waiting" for a second opinion from my surgeon  and another from UCSF. 

I say, "waiting," because we are going forward with plans for the HBO therapy as well as life in general, there's not much point in wringing my hands and worrying, it does no good and is actually detrimental to my health.  I may not have my cancer "Under control," but I never want to let it have control over me.  Life goes on. 

Moving forward

Busy day yesterday.  We saw rehab, had an adventure to Costco and met with the Wound Care Center to talk about the hyperbaric chamber (HBO) therapy for the still open (and I mean open) surgical wound from September of 2007.

Rehab was good.  All we did was conduct the assessment, but I feel like we identified what we need to concentrate on, chiefly my left arm and fine motor skills in the left hand.  I go in for my first actual session on Friday morning, so there will still be time for a nap in the afternoon - we must keep our priorities straight, right?  

There is a downside to this as well, though, in that I will miss my visiting PT'S, Cathy and Candy.  I really looked forward to their visits, the workouts, our conversations and their company in particular.  Very professional and very compassionate, positive attitude from both. I will miss them, but I'm excited about ramping up my therapy at RISB.

Costco is always an adventure, so many tools and things, so little time.  Got some great fish some computer stuff, etc.  and I didn't get tired!  I think taking Keppra out of the picture as a part of my seizure control regimen really makes a difference.  It was making me really dopey (I heard that) and tired as well as making me irritable, as well; there are few things worse than a dopey, cranky headcase, ya know?

The HBO Clinic was very interesting and I think we're going to proceed down that path as long as we can get all docs to sign off on it.   There is an increased seizure risk in the highly oxygenated environment of the chamber, so I'm waiting to hear back from my neurologist to make sure he feels the treatments would be safe for me  and then we'll go ahead and schedule the sessions; there will be five sessions per week for a total of twenty, I think he said.  I'll get to catch up on my movies as the tube is clear, I'll be rolled in on a gurney and there is a DVD Player. Each  treatment will take about an hour and a half, that' three full episodes of Stooges.  

I'm scheduled for my next MRI this week, so we should have a good picture, literally, of a lot of the issues by the end of the week along with a course to pursue.  Many of you have asked about the chemo treatments; we should also have that answered, although my oncologist wants to continue with the Avastin and CPT-11 as it seems to be effective in growth control to date. 

I've decided that cancer is a waiting or awaiting game; you're always waiting for test results, opinions from consults,  the end of a treatment and for the beginning of the next and always, always, always awaiting the next sunrise.

Don't pick that, daddy!

That's about all I hear around my house these days; well, that or, "Hey, put a hat on, man, I'm trying to eat, ya know?"  Although Anne says it differently, "Don't pick that, you idiot!"  Where's the love?

So we go to see the plastic surgeon today ; and what's the first thing he does?  Picks the damned thing!  I mean goes to town on it, until it's totally clean;  I looked at Anne and demanded, "How come you don't yell at him?"

"Oh, be quiet, you idiot."  Wow, tough room.

Our surgeon, who knows us now and knows that we joke around just shook his head and laughed as he figured out what was going on.   I explained to the doc that lately, all of Anne's sentences are ending in,"You idiot, and sometimes, "You, idiot!"  the doc is single, although he does have a girlfriend/fiancee, whatever.  Last time we were in his office before Hawaii,  he asked us how long we'd been married, "19 years," I said, "15 of the best years of my life."  to which he just smiled and shook his head as though he was thinking, "You poor bastard, you really are an idiot, aren't you?" I've learned the look, I get it a lot these days. 

Anne said,  "I've heard that line so many times it doesn't even phase me (wait for it) you idiot."

Nuts to you, doctors!

We saw the infectious disease doc today, Dr. Hosea, and gave him a box of chocolate covered macadamia nuts, we got a box for all of the doctors and their staff from the ABC Store right across from the hotel in Hawaii.  He was very appreciative, as was his staff.  They always seem surprised when we do this, like we are his only patients that do this stuff . . . maybe we are, who knows? Who cares?  

He took a culture of the wound and told us that the wound care dep't. at the hospital has the referral for the hyperbaric chamber treatment, or at least the consultation, so we'll set that up ASAP - it can't hurt to try it and I'll do just about anything to keep from going through another surgery to close the wound on the top of my head. As my plastic surgeon said, "Tom, if I thought rubbing your head in a pile of manure would help to close up your wound, I'd do it."  You're not the first person to want to try that, doc.

No answers yet on re-starting chemo or if that's the plan. Still lots of unanswered questions, some will only be answered by time, and they are usually the most disturbing, so better to not even ask, right?

Well, we're back!  We had a great time, great flights, great rooms, etc.  I love Hawaii, period.

I wouldn't want to live there again, but it's terrific to visit.  

The flight over on Hawaiian Airlines was on time and very comfortable, as was the flight back.  

I was very happy that we got rooms on the next higher floor than last Summer, so we had the same view, if not better - more pics of that to come.  The girls had a great time at the beach every day; the water was great and air temps were right around 80 each day, then down to 65 each night, so very comfortable.  Less shopping an very few day trips because we didn't rent a car for this trip, but the girls were satisfied to stay at the hotel beach and do their shopping on foot.

As hoped, we had a delicious dinner at my brother and sister-in-laws's house on Sunday evening and they bought dinner for Anne and me at a restaurant called Ocean in the Outrigger Reef hotel, great food, beautiful sunset from the lanai dining area - no pretense and very comfortable - highly recommended.  It was great to see both of them and my nephew, too.

One of two regrets is no water play for me on this trip.  I thought it best to not push my luck by wading into the surf this time, so I didn't go in at all - very tough pill to take, but better safe than sorry, I guess.  We're going in to see the plastic surgeon to figure out how to close the surgical wound once and for all, I hope; that is what kept me out of the water, after all.

The other is I'm thinking it was probably too soon for me to go for a number of reasons, chief among those is the fact that the girls were very concerned about me whenever we went anywhere.  I don't think they could relax like I wanted them to be able to.  I think they had fun, so I know it was worth it for them.  We're not going anywhere else until things resolve themselves medically for me and I am at least physically more able.

All in all it was a well earned trip that went off like clockwork.  Aloha.

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?

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:   http://www.outrigger.com/hotels-resorts/hawaiian-islands/oahu-waikiki/outrigger-waikiki-on-the-beach    -   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!

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.

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.

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 (http://www.eyemdlink.com/Condition.asp?ConditionID=95) 

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!

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!"

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.

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 . . . 

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!    

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!

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.

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.

Discharge date!

I'll be getting out of rehab in a week to continue my recovery at home with outpatient care and continuing PT. Between now and then I have to really focus on my physical recovery so that I can be self-sufficient around the house as much as possible. Exciting news to say the least.

Today I'm feeling a little slow as I took more pain meds than usual last evening . . . because I was in more pain than usual with a sinus headache; once I was out, I was out though. It's rainy and cold here today . . . good day for sleeping; but no, two hours of PT and another hour of OT. It's tiring, but great to see the progress, sometimes without being aware of it myself until my PT therapist or Anne points it out to me. Visitors have been light, which is fine for now with my workout schedule.

Anne has been great about brining me stuff from Trader Joe's Market, as the "Food" here is barely recognizable as such and virtually tasteless.

I can't wait to get home next week.

Happy Monday

I know those two words don't go together normally, but those days are gone for me. There are no more bad days, as Lance has said.

I had yesterday off from PT so I spent most of the day relaxing and watching tennis. A few friends came by to say hello, but other than that it was a quiet day, which I needed. I'm definitely making progress physically. I've been told that I'll be here another two weeks. As long as I get to see my three girls I'm fine.

I figure it will take as long as it takes and try not to think about how homesick I am.

Too much tennis

It would stand to reason that in a place where I can sleep better than at home or in hospital I would take advantage of the opportunity and do so, right? But the Australian Open Tennis Tournament is on in the middle of the night! I doze in and out as Maria Sharapova dances across the court in a display of both skill and grace, while dismantling her opponents with ease; I'm just glad she's stopped calling finally.

So I'm sitting in my bed at RISB (Rehabilitation Institute of SB), blogging away and watching a replay of the match that will end up eliminating Roddick from the Open. I've finished my three hours of therapy for the day with the knowledge that the infection is being not only controlled, but eliminated by the meds. They're saying I'll be in here for another two weeks; so I will lose the whole month of January. I'm homesick. I just have to focus on how much stronger I'll be when I get out and be grateful that I'm here at all . . . not too tough to do under the circumstances.

I'm sorry if I gave you a scare in the multi-day "neglect" of this blog. Hopefully you had a connection to get updated before now. I understand that some of you talked to folks you had not made contact with in years and in doing so may have re-connected with an old friend. Don't let those connections break again. When it comes right down to it, they are the the things that make truly wealthy.

Long awaited update

Sorry for the silence, but I nearly died last weekend; so you'll forgive me, right? I know it sounds overly dramatic, but it's evidently the case as I'm told by my rock-strong wife. Friday morning, as previously blogged, I think, I had a fairly significant seizure that put me in bed for the rest of the day. I had an MRI later in the day which confirmed the infection and sent me to the hospital for emergency surgery, no choice in tht matter according to my doctor. Do or die and all of that. I'm not sure just what the formal name of the "bug" is, but I know it was not good nor was it easy to diagnose, evidently. Fortunately, one of the docs in my surgeon's group is a diagnostician (like Dr. House on tv sans the attitude) so I was in extremely capable hands, once again; somebody up there likes me or has unfulfilled plans for me or something. I appreciate their trust in my ability, I just wish they (He) didn't have so much confidence in me at times, to paraphrase Mother Teresa.

It looks like I'll be in rehab for about two weeks, which both Anne and I think is great. They'll get me physically strong enough to normal so that I can be confident about going home in good shape. It's extremely draining right now, but well worth the effort in the long run.

I'll try to keep up with both the blog and your comments.

It's just a flesh wound!

I'm resting comfortably in SB Rehab and I'll give a full update soon.

More treatment

I had my second treatment yesterday; 3 hour infusion of Avastin and CPT-11.  I felt anxious and tired at the same time for the rest of the day, other than that few side effects beyond nausea and headache.  Okay, I guess it wiped me out and made for a very fractured sleep last night. Fortunately I bought a bunch of old Erroll Flynn movies last week, and there's plenty of political coverage on today, so I've got plenty of entertainment for between naps today.

I asked my doc about the numbness in my hand and face.  Fortunately, I have my neurologist's cell number, so they were able to talk during my appointment and his opinion is that my problems are consistent not only with the location of the tumor, but may well be due to necrosis, or tumor death, and the ensuing clean up process.  Gregg (my oncologist) shared that opinion as a possible scenario, which is great news.  Either way neither he or Dave (my neurologist) seemed particularly concerned, so I'm not going to be; doesn't help to be anyway - still, keep your fingers and toes crossed,please, until further notice. 

The toughest part of this process is waiting, once again, for the side effects to subside.  If it stays consistent with the first treatment, the symptoms should change within a few days; whether they will improve or worsen remains to be seen because of the overall process.  If it's killing the tumors I have all the swashbuckling films, drugs and all the time in the world to wait.

3:00am?

Okay, this is ridiculous.  I mean waking up is great . . . but being awake enough to get up to blog?  You can't be serious?!  Why am I asking you?

Another treatment today after seeing my doc.  I report in at 10:00am and will probably be getting juiced until 2:00pm.  It could be a lot worse; my friend, Rick, has been in the hospital for his chemo treatment since last Friday, I think.  Hell of a way to bring in the new year.

Speaking of bringing in the new year, now that a few days have passed since New Year's Eve I suppose I can laugh about this.  Anne injured her left arm (thankfully she's a righty) a while back, then she re-injured  it again, and again.  She really did a number on it a few days ago to the point that she was grimacing . . . this from a woman who never admits to pain, unless it's describing living with me, which is completely understandable, of course.  So she goes to the doctor, ends up with her left arm in a sling and in more pain than childbirth, according to her, which I made it through with no problem - I don't understand all the fuss about that one.  Just kidding - please no hate mail, moms.

Anne picked up a couple of beautiful filets at Costco - best place for beef, by the way.  She also got green beans and potatoes - basically my favorite meal.  So Caitlyn got the George Foreman Grill down, one of the best gifts Anne ever bought for me/us, by the way.  I had dry rubbed the meat earlier (right after I marinated the steak - sorry - it's my blog; sue me).  And now the picture appears; my left hand is numb and can't grip a thing, basically.  Anne's left arm is killing her and she's taking her frustrations out about the Vicodin not working fast enough by freaking out on the fact that the heater is on with the bathroom window is open; totally unlike her.  The girls are both getting ready to get out of Dodge because they have parties to go to and because they can see that the night is going to be ugly ay home with the cripple twins trying to make a nice dinner with two functional arms between us.  

So the meat is cooking, the potatoes are cooking, the beans are cooking; thanks to the patented over and under fat-decreasing grills on the George Foreman Grill, the filet is cooking itself, basically.  Where's the champagne?  We got a very nice bottle of Chandon champagne for our anniversary . . . last March that I was not about to let stay bottled into 2008; I think that would've been bad luck for some reason and I wanted to drink some good champagne anyway.  Now picture this; the meat is done, rested and ready to be cut . . . but how to do that with a bad wing?  Like everything else Anne and I have successfully done to face this challenge; teamwork.  She forked the filet and I sliced.  No forks or knives necessary, fingers work fine.  Great food, great drink, great company, even through the pain and looking back now probably one of the most entertaining evenings to have had a hidden camera in the kitchen to replay later for laughs.

In a few hours I'll be hooked up to a different kind of elixir.  Not quite as fun or the same kind of buzz certainly, but hopefully just as good a vintage.

"Not everything is symptomatic..."

One of the most important things that my local oncologist, Gregg Newman at Sansum Clinic, told me early on is just that; not every ache and pain is attributable to, or symptomatic of, the cancer.  That having been said, I think that a cancer survivor (which I believe you become from day one), whether newly diagnosed, in treatment, or 10 years out from the end of treatment,  would be less than truthful if they said that in the deep, dark recesses of their minds, that specter materializes when a strange pain or condition suddenly appears.  As Lance Armstrong has said, "Cancer may leave your body, but it never leaves your life."  

While my left leg and my balance have continued to improve, since last Friday my left hand has been feeling numb, weak and listless and it continued periodically over the weekend around my lips on the left side (new tumor, right side).  That has since gone away, but the hand numbness is constant now, which is troubling, at best.  I called the clinic and talked to the on-call oncologist (tongue-twister).  His opinion was that it may be attributable to the decrease in steroids that we did after the last dose, so he suggested an increase back to the higher dosage.  Who knows if the increase is what stopped the face numbness, but it has indeed stopped; the same can't be said for the hand numbness, though.  Of course, with the increase in the steroid dose, my left hand, ankle and both knees feel swollen and tight.  Steroids, as I've said before, are the double-edged sword in this whole mess; damned if you do, damned if you don't.  I'm scheduled for another infusion tomorrow. 

I try to keep this in perspective.  I try to tell myself it's not related to the tumor, just a side effect, and I do a damned good job of convincing myself (he said, wiping the bead of sweat from his forehead).  It's always there, though, in that deepest, darkest recess of my own mind, keeping company with the Boogie Man.

Now, on to the big announcement.  I'm inviting anyone who would like to join me for the Bay Area  LAF Livestrong Challenge on July 13, 2008, to become an official member on TEAM TOMSTRONG (I'm working on the jerseys, don't worry).  We'll be raising money as a team to benefit the Lance Armstrong Foundation.  More information will follow shortly.  In the meantime, some preliminary info to hold you over  http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661929