TomStrong: Our Dear Friend's Journey

Aloha - Tom Whittaker

2008-10-28T00:20:00.000-07:00

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

2008-07-06T14:18:00.000-07:00

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!

2008-07-01T08:02:00.000-07:00

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!

2008-06-27T08:07:00.000-07:00

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

2008-06-25T09:38:00.000-07:00

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!

2008-06-16T12:24:00.000-07:00

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

2008-06-09T20:16:00.000-07:00

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 . . . .

2008-05-21T05:35:00.000-07:00

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

2008-05-14T18:17:00.000-07:00

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!

2008-05-10T17:38:00.000-07:00

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........!

2008-05-08T06:45:00.000-07:00

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

2008-05-07T14:15:00.001-07:00

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

2008-05-07T06:45:00.000-07:00

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

2008-05-04T05:23:00.000-07:00

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.....

2008-04-30T04:23:00.000-07:00

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

2008-04-25T06:36:00.000-07:00

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

2008-04-18T04:50:00.000-07:00

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

2008-04-15T08:35:00.000-07:00

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!

2008-04-10T14:21:00.000-07:00

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!

2008-04-08T16:39:00.000-07:00

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?

2008-04-05T15:35:00.000-07:00

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!

2008-03-28T08:42:00.000-07:00

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?

2008-03-27T07:55:00.000-07:00

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 . . . .

2008-03-24T08:45:00.000-07:00

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

2008-03-14T08:49:00.000-07:00

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!

2008-03-12T17:03:00.000-07:00

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 . . .

2008-03-10T11:00:00.000-07:00

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 . . .

2008-03-02T08:51:00.000-08:00

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.

2008-02-24T09:29:00.000-08:00

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

2008-02-22T18:04:00.000-08:00

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!

2008-02-16T16:38:00.000-08:00

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!

2008-02-12T18:38:00.000-08:00

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

2008-02-09T11:53:00.000-08:00

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!

2008-01-22T09:18:00.000-08:00

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

2008-01-21T08:40:00.000-08:00

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

2008-01-16T10:13:00.000-08:00

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

2008-01-15T10:27:00.000-08:00

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!

2008-01-13T10:59:00.000-08:00

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

More treatment

2008-01-03T07:21:00.000-08:00

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?

2008-01-02T03:20:00.000-08:00

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..."

2008-01-01T07:37:00.000-08:00

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

Happy New Year!

2007-12-31T07:28:00.000-08:00

Well, the end to one of the most tumultuous years of our lives is coming tonight, and it can't come soon enough for me. In the words of my brother, "Do something different to end the year tonight than you did last year, will ya?" Oh, you mean like, stay up to actually say goodbye to 2007?

There were certainly more highlights than low, but the lows were REALLY low. Among the highlights were the fantastic trip we took to Hawaii. We celebrated my 45th birthday there with my brother and his family and had a great time as an extended family (Rachel). It was mellow as trips go, with great weather, great food and lots of love. That patch of sand and surf is calling to me for our March trip.

Another really fun trip was one that my brother and I took to the Tetu Island Lodge in Canada for 4 days of fishing. What a place. Everything you could want in a fishing lodge and more without going over the top; see the web address at the end of this post. Brian and I went as sales rewards from one of the companies we rep for; we both sell commercial and coin-operated laundry equipment and have our own companies. It was not a trip we ever would've thought about booking for ourselves, we agreed, but I would definitely return there after the great time we had and I think Brian would as well, which is even more surprising as he wasn't that excited about going in the first place. the best part about it was that we got to spend some really good time together. He is ten years older than I am and we are closer now than we've ever been; just in time as it's something we've both been hoping for and now we have the relationship we've always wanted.

My customers were also very good to me this year and I certainly appreciate their loyalty, trust and most of all their patience these last few months. I will be announcing a new sales/charitable giving policy from my company on January 1, 2008 to benefit cancer-challenged individuals.

I've got to hand it to my girls, Caitlyn and Kelsey. Through all the trials, fear and uncertainty with my cancer, they remain happy, helpful and certainly the best parts of my day. Kelsey will get her braces off on Wednesday while I get my next infusion; I'm afraid I'll have to carry my cane again after that, not for me, but to keep the boys away. Between her smile, her personality and her brains she will be a catch in years to come; fewer than I know. Caitlyn is well on her way; very self confident, poised and getting prettier every day. I have no doubts about either of their coming successes in life and look forward to being a part of each.

There are no words to adequately describe my love and respect for Anne. Suffice it to say she is the most patient, caring and loving person I know. Her strength is my foundation. She does not deserve the trials that cancer has put on her between her mother and me, but she bears it with grace and humor. There is nobody I would rather go through the rest of my life with, in sickness or in health, as the vows go.

To you all I wish a Happy New Year. May 2008 bring you what you need, what you want and some extra rewards along the way. I've certainly appreciated your feedback on this blog and look forward to more of the same next year. More than that I've appreciated your love and support for all of us; I guarantee it's benefits to us and return it to you ten-fold.

HAPPY NEW YEAR!

Tetu Island Lodge http://www.tetuislandlodge.com

ABCC

2007-12-31T06:53:00.000-08:00

I have done you a disservice by not directing you ENERGETICALLY to the ABC2 (Accelerate Brain Cancer Cure) website and the tremendous wealth of first hand interviews and advice from some of the top people in the field focused specifically on brain cancer. THIS IS A MUST VISIT SITE FOR YOU if you are the survivor or you care for one.

http://www.abc2.org/podcasts.shtml!

I wanna get lei'd

2007-12-30T14:00:00.000-08:00

I'm tired. Tired of feeling slow and gimpy. Tired of no riding. Tired of waiting for the next treatment and result.

I know I don't have a choice and that complaining won't make it better, so I booked us into the Outrigger Hotel on the Beach for the girls' Spring Break at the end of March for a shot of medicinal Aloha. We went last year with our unofficial third daughter, Rachel, and had a great time; we're hoping to take her again as her school break schedule will work with ours.

I grew up on Oahu and went from first through eighth grade there; it's home to me. My older brother, Brian, still lives there with his family; his daughter, Megan, is my niece who came down to spend Thanksgiving with us recently. There is just something about that fragrance when I step off the plane and into the freshest air I've ever breathed. Then there's the water, that warm, clear water. I remember the look on the girls' face on the first trip we took there with them. It spoils you, I know it did us because when went in late June for my birthday last year, I didn't even set foot on our local sand, let alone the water when we returned home.

The girls are to the point now that they can enjoy relaxing around the pool, as long as they can go to the ABC Store later on - and as anybody who has been to Hawaii knows, if you can't find the ABC Store, just turn around. They love to walk around Waikiki, shop, eat and play tourist; if it makes them happy, it makes me happy.

Down the street from the hotel is a coffee shop that has the best Breve and best banana bread I've ever had. In front of the hotel is a long, shallow spit of sandbar that goes all the way out to the surf zone. Out at the end of the strip is a lump of sand with my name on it . . . and it's calling me.

Another good day ahead.

2007-12-28T06:56:00.000-08:00

Very good day yesterday!

I bought myself a new laptop and spent most of the afternoon and evening setting it up. I should have it dialed in fully today. I decided to go with a Mac Book Pro with both Vista and Mac operating systems on it for maximum versatility and creative flexibility - also safety.

Good energy and a good appetite also returned yesterday with food tasting like it should with just about everything I ate. I am hooked on fresh pears, peaches and am craving nectarines - tough to find any truly tasty nectarines right now, though. I've also been craving carrots - ? I've always liked carrots, but never this much. I wonder if my body knows I need extra beta carotene or if it's just that I like the taste? Oh well, better than cookies, right?

I've noticed my stride becoming more normal each day, which is great. I've got to work on my arm strength and dexterity, however. It's just time and effort and I've got to keep making an investment in both; use it or lose it, as they say. I'm ready to set up the indoor trainer again, which was taken out of the living room for the holidays to make room for the tree, etc. My neighbor, Matt, borrowed it and I don't think he's even set it up yet - sorry, Matt. I'm seeing good forward tracking in my left knee and that is key to good pedaling form, which is important for training.

It's not going to be pretty when I squeeze into the lycra. It's a good thing I have my Fat Cyclist jersey to wear (www.fatcyclist.com). Please, no paparazzi . . . for your own sake.

Back on track

2007-12-27T05:27:00.000-08:00

Boy, when I'm off, I'm off.

I guess you'd have to really know me to understand how rare it is for me to not be able to eat - I'm definitely a member of the Clean the Plate Club. That certainly was the case yesterday. Nothing tasted right, although the organic dark chocolate bar that Santa Anne put in my stocking came darned close! It also takes a lot to keep me in bed all day, which was also the case. It was a good day to do so, however, as it was incredibly windy and dusty outside and I had very little energy to do much else; I suppose I need to allow myself days to be lazy like that from time to time.

This morning I'm feeling more like myself again and I'm considering sneaking up a bowl of cereal, so I'm hoping for a more normal and perhaps more productive day.

Worn out!

2007-12-26T09:17:00.000-08:00

Hope you all had great day yesterday. Unfortunately most of my Christmas Eve day was spent in bed with gastrointestinal side effects; feels like they're back today, too. Fortunately, there was a marathon of shows on A&E about climbing Mt. Everest, which I've always been interested in - I would love to go to base camp one day.

Santa was good to all of us, as we hope he was to you. I'm exhausted . . . the girls are going shopping, of course. Life is good.

Merry Christmas

2007-12-25T06:11:00.000-08:00

Christmas comes but once a year

To remind us what's important here.

Family, friends, and thoughts of giving

To those whose lives give ours true meaning.

And hopefully we've learned by now,

That price and size and color of gift,

Have no meaning beyond our dollars,

If we're not able to touch and lift

The spirits of those we look to honor.

Today I look to honor you,

My friends, my family and my blogging crew.

Each day you give the gift of caring,

And my gift to you is gratitude.

Merry Christmas and may all the many blessings I've been shown by your kindness and caring come back to you ten-fold in 2008! Watch for a huge announcement on 01/01/2008 regarding Team TomStrong!

Tom

The day before the day before . . .

2007-12-23T06:10:00.000-08:00

Hello I'm Tom, and I'm a Christmas-a-holic. I have freely admitted to this both in clandestine after hours meetings in dimly-lit, but well-appointed, VIP rooms of electronics stores and privately during those Home Shopping Network self-help spots between special offers from the Tony Little Yuletide Gutbuster Extreme. I must say it's not as effective when we're not face to glassy-eyed face with another Yule-Challenged individual who can feel your pain, however. I'm starting to suspect that some on-line sites, such as Ebay, do not have my best interest at heart, having sent me that replacement keyboard with the logo-ed, backlit button that bypasses all of the auctions and goes straight to the Buy It Now offerings (it did make it easier - until it wore out). I know that if I stick with the meetings I'll get past this, but do I want to? I just wish they'd take that commercial off where the son comes home and wakes the mom up making Folgers coffee; it makes my wallet loose.

Since as far back as I can remember I've loved everything about Christmas. I remember "helping" my dad put up the big Santa on the roof of our house in Encino, CA. The old fashioned, diesel generator powered, large bulbs that glowed so brightly on the roof line of our corner of Zelzah and Valley Vista. I think we had those same bulbs for quite some time in Hawaii but finally had to replace them when the colors got so washed out that they reds were no longer discernible from orange from green and so on. I still prefer colored lights to white, especially not those impossible white icicle lights. And you better not ever bring me those solar-powered, weak-ass LED lights, either, or you'll end up with no Toll House cookies, my friend. Speaking of cookies; don't they somehow taste better in December than in any other month?

And about that tree. As much as I hate to admit it, we actually had a fake tree in Hawaii for a couple of years; I know, it was blasphemous then as it is now - and I'm vaguely ashamed. I don't remember the circumstances of that all; the intensive therapy sessions have evidently helped me to block out the details of that memory, thank goodness. I've always wanted to go out in the snow, cut down a tree, and drag it back to the house, but living near the beach in CA, that's a long drag - no pun intended. I will do that at some point, however.

Now we are at the day before the day before, and I'm feeling very strong this morning after a bit of a sleepy day yesterday. There's a ham in the frig for tomorrow night, to be followed by the annual screening of "It's A Wonderful Life," the Frank Capra, black and white version, of course. One day I'll get the girls to watch it with me . . . so they can cry, too. I know that movie backwards and forwards and yet I still get something special out of it each time.

Tonight we're going to have a very special family over for casual dinner, with any luck. Our two families have been through the meat grinder this year and have been each other's support. I'm looking forward to Christmas Day with the Nack family (Anne's side) . There's never a dull moment there and I love them very much. I hear Autumn is really doing up a feast, even as a shadow of her former self, so to speak - inside stuff - can't wait to see her.

I have so much to be thankful for this year. Through all the trials, pain, frustration and anger of the last few months, there is still so much to be grateful for and hopeful of.

I just wish they could actually get a live shot of Santa and the reindeer on that NORAD website, so I could buy the tape off of Ebay.

Small victories . . .

2007-12-21T05:53:00.000-08:00

Well, there's no wondering about it today; before I knew it I was up and out of bed, slippers on in 30 seconds (as opposed to needing a shower after the struggle) . . . at 5:22. Halfway down the hall towards the kitchen I realized that I was walking without my trekking pole (it's not a cane!). Perhaps it felt so natural and didn't occur to me because each day I wake up and assume/visualize that I will stride normally down the hall normally. Today I almost did. Just the fact that I slept solid until 4:30am and then went back to sleep until 5:00 is huge . . . though probably not to the average reader.

My friends, Rick, Kate and Randy, among others, are more than a little emotional as they read, though, because they know exactly what I mean when we talk about the importance of celebrating the small victories and the boost they can give. I'm very encouraged by this and it in turn will motivate me to move forward in my rehab, both at home and at the Institute formally.

This is going to be a great day . . . there really are no "small" victories, after all.

Practicing medicine

2007-12-20T16:23:00.000-08:00

I can't be sure, but I think I'm feeling stronger today; I seem to be moving with more strength and fluidity and I think turning down the steroids has helped with the joint swelling. It may just be wishful thinking, but so what if so . . . I'm feeling it.

Yesterday was great. Caitlyn had a happy birthday with girlfriends over last night for TV, cake and junk food - the way it should be. I was banned to the back bedroom (not really) to watch TV all night by myself and did feel a little left out, but that's what's going on right now and it's not going to last; so I'll deal with it until it passes, which it will, and move forward.

The eye doctor saw some improvement yesterday during our appointment. That is the most frustrating part of this whole mess right now, I think, because it skews my depth perception, my ability to read, etc. Hopefully the decrease in steroids will improve it, which is what he seems to believe will happen. Once again, though, it's a delicate balancing act. Decrease/increase one medication to improve a symptom and negatively impact another; it sometimes comes down to the lesser of two evils and even then it doesn't always work.

That must be why they call it "Practicing medicine."

Now it's official

2007-12-19T05:58:00.000-08:00

Do you know how you know when you're really a cancer patient? For me it was yesterday sitting in the reclining chair at Sansum Clinic hooked up to an IV for four hours while hope was being infused into my body.

I can honestly say that I don't feel like I've been in denial at any point over the past seven years with my cancer. Sure, I've had some interesting ways to face it, like spelling out rather than saying, "B-R-A-I-N T-U-M-O-R," in private car or midnight conversations with myself or God early on, and still occasionally; you do what works, after all. I think I've always considered the IV treatments the most visually impacting and uncomfortable in my own mind. I can't give you a defensible reason for that perception, however, and the treatment was a piece of cake and far less intimidating in actuality. I think that Anne and I were so anxious to get back on the attack that we were not able to be intimidated by the actual event.

After the treatment we talked about side effects and such, of which I had some nausea last night which passed quickly. I am scheduled for a second infusion in two weeks and then two weeks following that with a scan to gauge my progress to follow.

Today is Caitlyn's 17th birthday. It's a stormy day outside, just as it was then, so it's bringing me back to the moment. No more talk of tumors today.

Leroy Sievers' blog today

2007-12-18T06:55:00.000-08:00

This is an incredibly powerful entry from Leroy today - see the link to his daily blog in the links section of this page....

The Strength to Remain Standing

Posted: 18 Dec 2007 06:11 AM CST

It all comes down to strength.

Where do we find the strength to take one more pill, go through one more procedure, wait for the results of one more scan? How do we find the strength to keep moving when the pain is strong enough to bring us to our knees? We're all stronger than we think. But I'm talking about something more. Where does the strength come from to keep fighting, even when the odds may be stacked against us?

For me, I think some of it is just stubbornness. I'm not going to let the disease beat me. Or at least I'm going to make it work damn hard to get me.

We lose our strength sometimes. Over the past few weeks, I admit that I've given into despair. There have been times when it all just seemed too much.

But I've never thought about giving up. Back when I was working in Latin America, one of the rules was that if you were stopped at a roadblock, you never got on your knees. Others, including journalists, had been forced to kneel. Then they were executed. So the thinking was, never get on your knees; Well, I may have bad days. I may be weakened by the pain. It may be all I can do to fight through the day. But with all of that, I'm sure as hell not getting on my knees.

Ever.

-- Leroy Sievers

I'm ready for success!

2007-12-18T04:52:00.000-08:00

Today I'm feeling very hopeful.

The feeling actually began yesterday with the call from Lorie at Sansum Clinic informing me of the approval from the insurance company and scheduling the first chemo infusion and snowballed from there into the sense of total release, for lack of a better term, in anticipation of a better tomorrow. As I said before, if you don't believe it's gonna work, don't bother.

Then last night, our "Third daughter," Rachel, came over to hang out and help us decorate the tree. Anne had done a great job putting the tree lights up on the prior night, unbeknownst to me, until I walked out of my office and saw it in the evening. There is something about a twinkling tree that just screams Christmas; always has and always will. That was the first time she had done that in over 21 years that we've known each other and I was very impressed . . . and had the good sense to tell her.

I feel like I've had a change of attitude; returning to the glass half-full mentality. Hope is powerful.

On a technical note; I'm going to see if I can blog the experience as it happens today. Stay tuned!

Approved!

2007-12-17T13:54:00.001-08:00

We just received word that Blue Cross has approved the chemo treatment, which is great news as the treatments are not inexpensive. We will go in tomorrow for the first three hour infusion and then discuss a schedule from there on in. I'm not sure how often or how long the treatments will last, and at this point I don't really care; I'm just happy to be on the attack again! Bring it on!!

"People who need people . . . "

2007-12-17T05:14:00.000-08:00

One of the best things about cancer (another oxymoron, I know) is that you start hanging around with a much better class of people; people who are smarter than you, more sensitive than you and who can teach you things you never knew you didn't want to know about your body and how it can betray you when it wants to (what silver-tongued devil I am, eh?).

These people are known as professionals, volunteers and survivors, of which I am now a two-time survivor and ongoing volunteer, so I should be twice as valuable by this time, right? The only down-side to becoming one of these wizened individuals is that one must go through the pain of a personal relationship, either your own, a family member's, multiple patient's or friend's, with cancer and learn as you go. I'm still way lost, so follow at a safe distance because as far as I know Garmin has not made a navigation system for cancer . . . and if they have that sucker it better be under the tree or the fat man's gonna be choking down Aunt Bertha's Holiday Date fruit cake next year instead of tollhouse cookies.

"These people," are some of the most valuable you will ever meet, and they/we would return that sentiment wholeheartedly. We are more than willing to have our knowledge and experience taken advantage of, and in fact welcome your pain, because in a strange way your pain is our medicine; empathy is what is transfused between donors. It is virtually painless to deliver and helps both the giver and receiver. They can inject it with a smile, a hug, or a warm voice on the other end of the phone line.

Accept it. Relish it. Learn from it. Pass it on.

Cycling Part II

2007-12-16T05:04:00.000-08:00

Well, now I'm really having cycling withdrawals. We had to take my road bike out of the stationary trainer in the living room to make room for the Christmas tree. It makes sense since I am not able to use it right now anyway - a situation that we're hoping will change this week with the new treatment coming on Monday or Tuesday. My new friend and neighbor, Matt, is borrowing the trainer as he has been considering getting one, so it has all worked out nicely.

In my first posting about cycling I talked about the Ride for the Roses event in October of 2005 in Austin, TX for the LAF http://livestrong.org/. It's important to note that prior to this event, the longest ride I had done was for the MS Society in Santa Barbara, it was just over 30 miles and it was on a hybrid bike; a cross between a traditional racing bike and a mountain bike. I enjoyed it, the comaradery of group riding and felt empowered by my ability to personally effect the lives of people challenged by a disease that may limit their ability to do so themselves by raising funds from sponsors.

I was already interested in LAF through the books and time I'd spent on the website learning about the organization and it's very appealing, serious grass roots structure. There was/is a very low overhead/administrative percentage, meaning that the majority of the funds went to the programs and cancer challenged individuals it was set up to serve in the first place. Having done work with local non-profits, I look for that as a demonstration of the commitment of the organization to those the serve in a lean, focused and in-the-trenches approach, and they most certainly demonstrate that. I have chosen to raise funds for them exclusively because they plan and execute events effectively, advocate for political change in a positive way, and encourage personal advocacy as the cornerstone of care and survivorship among cancer-challenged individuals and their families.

So in my reading, I found out about the Ride for the Roses (RftR); it was around July and the event was in October, so I had some time and the perfect weather to train. It was the premier event for LAF in 2005 and had various lengths from 5 to 100 miles. I decided early on that if I was going to travel all that way, I was going to do the full century ride (100 miles). I found a great training program in Bicycling magazine that called for a six-day a week, 10-week regimen with varying paces and daily objectives - best of all it was free! It focused on increasing mileage by 10% to 15% each week until the weekend before the event you were on a, "Comfortable," 85 to 95 mile ride. I absolutely loved the program, the way it made me feel to commit to the training schedule - even though I have traditionally not had the ability to do so and stay committed.

So I flew down to Austin on the Friday before the Sunday ride to take in the athletic expo, get registered and do some exploring of the beautiful city of Austin. I love Austin; the people, the energy, everything about it is appealing and I can see why people say not to miss it when in Texas. I went to the expo on Saturday all day and spent money on more spandex, socks, etc. than I should've, but what the heck. I had a great Tex-Mex dinner right next to my motel the night before and got a good night sleep with a 5:00 wake up call set for Sunday.

On Sunday morning I rode 7 mile to the event with some folks I'd met the day before; it was a good warm-up, but it was cold, too. All riders left in groups dictated by their forecasted ride times. Almost immediately after departing a group of riders went down in a heap; it's a whole different dynamic riding in a group and it takes some getting used to, that's why I stayed out of groups and "Paceline," for what was my first big ride. What I did do was to take my time, ride my own pace and focus on the experience, not the pace. Part of that was the talking to both survivors and supporters, differentiated by small signs we all had pinned, as we rode the sometimes very rutty country road around Austin. All I talked to were so passionate about their reasons for riding; all shared the desire to tell their story when I asked, "So tell me about so who you're riding for?"

I remember being stunned at the greenery around the area, welcomed the friendliness of the residents and their support, and specifically remember on house that looked like a Hollywood movie set. On the front porch sat mom with a young child in her lap. Two more were playing in the yard and dad was in his red long johns - no fooling - hose in hand watering the vegetables and smoking his morning stogie with a big smile. I also remember the best PB&J sandwich I've ever had right about mile 75. By the time mile 75 had come around, my shoulders were aching, no screaming out for a break, so at the next rest stop, of which there were plenty, I got a free massage from a very sweet oncology nurse/massage tech who had been there all day and whose hands I'm sure hurt more than my shoulders; but in keeping with the general characteristics the breed, she insisted on giving me some welcome relief.

When I crossed the finish line at 100 miles I was handed a yellow rose to identify me as a survivor. I finally stopped, and broke down sobbing with about a dozen different emotions ranging from exhaustion to a tremendous sense of accomplishment and gratitude. I immediately got on the phone to Anne to let her know I had finished, stayed upright, and would be coming back the following year.

Update

2007-12-14T07:22:00.000-08:00

No approval yet from Blue Cross to my surprise. I'm still hopeful for it to come through this morning in time for the first infusion prior to the weekend.

I did ask my UCSF doc about the possibility of draining the cyst along with the chemo; which I had some confusion about. He explained that if we did any kind of surgery it would take an additional 4 weeks for the wound to heal prior being able to start the chemo and the hope is for the Avastin to also shrink the cyst, further relieving the physical symptoms, which would be great, as I'm starting to form a list of victims for the short, re-building endurance rides.

I can't wait to get back on the bike! It will be difficult to keep me off for a while . . . not a bad problem to have, I think.

I've heard from some old high school friends and their family's over the past few days with wishes of love, support and an offer of free accomodations in a Tuscan villa for us all for a week . . . sometimes it pays to play the fool on the school bus in the morning, after all!

I think old friends are like a well worn wool blanket; always there and the greatest comfort in coldest times when you really need them; what could be better?

Holding pattern

2007-12-12T15:02:00.000-08:00

As of today we are waiting for approval on the Avastin regimen from Blue Cross. Dr. Newman is not concerned though, as he has seldom had difficulty with it; it just takes 24 - 48 hours to come through. You have to play the game, I guess. I'm still hoping for the dose by the end of the week just to get going.

I'm moving around better, which is confusing, but I'll take it, ya know? I slept well last night again, still got up at 4:00am, but felt rested, which is the main thing. I'm not anxious, stressed or any of that, just impatient to start the new treatment. The more I read about the treatment the better I feel about our potential for a successful outcome.

Anne went to pick out our Christmas tree yesterday. That's the first time I hadn't done so and it was strange for me, but a good friend of ours, Peter, went and picked it up, brought it to the house and helped her get it settled in the front room. I'm feeling a little detached from Christmas this year because I'm not doing my usual jobs of decorating, moving boxes here and there and such. I'm going to try to string the lights on the tree today . . . hopefully without taking out the tree altogether, and then the girls will finish decorating it tonight.

I'll get into the spirit, not to worry. It may take a batch of Tollhouse cookies or Gingersnaps, however.

Okay, let's go!

2007-12-10T16:53:00.000-08:00

We heard back from UCSF today and while the news was not what I had hoped for, we at least now have a plan and can move forward. It is Dr. Butowski's opinion that the majority of growth is actually tumor, and not cystic, so it is not advisable to surgically disturb the area, potentially causing more harm than good. I will be starting Avastin and CPT-11 therapy as soon tomorrow as long as we can get the insurance approval. Judging by Blue Cross' past outstanding (truly)performance in similar situations, I'm reasonably confident that we'll be in good shape.

For more information on the treatment please read:

http://www.cancer.duke.edu/btc/modules/news/article.php?storyid=45

http://dfw-neuronetwork.com/Avastin_and_CPT-11.htm

I am encouraged by both of these articles and others I've read, as well as by what Dr. B had to say about the treatment. I've always said that there is no point in pursuing a course of treatment, Western or Eastern, unless you believe that it will work. Anne and I both believe after what we've read and talked about, that this is the best course to follow at this point, so bring it on.

Stay tuned.

Each day holds promise.

2007-12-10T05:30:00.000-08:00

I'm expecting big changes to occur this week. I received a voicemail from my contact, Ken, at UCSF, which tells me that they have received the films of the last MRI and those films will be read today or tomorrow at the latest. I'm assuming and will push for a course recommendation ASAP so that we can pursue one of the three options without further delay, IT'S GO TIME. If I can nail down an opinion from Dr. Butowski on the phone and have him communicate with Dr. Jones, my local surgeon, we may be able to do a procedure this week . . . yes, I'm impatient and I want to get out of the rut I'm in both physically and mentally.

I had a couple of similar conversations with couple of close friends at the community events over the weekend in which we talked about how I'm dealing with getting up each day knowing that I'll be struggling with the same physical frustration of the day before? I tell them, and this is how I honestly feel, that each day when I'm pouring my coffee (one of my favorite times of the day) I tell myself that this day I will make a measureable improvement in either my attitude by learning how better to deal with things, my physical progress or some other facet of dealing with my challenge. I'm reminded of one of my favorite quotes:

"There is no medicine like hope, no incentive so great,

and no tonic so powerful as the expectation of something tomorrow."

Stay tuned and keep the faith!

Just say hello

2007-12-08T15:44:00.000-08:00

I see you there,
Out of the corner of your eye.
Yes, it's me talking to a friend;
Yes, I am swollen and a little slow,
And I don't what to say to you, either;
Why not say hello and let's see where that takes us?

Yes, my cancer has come back,
Just as you had heard,
And I am in treatment,
And that's why I look this way and walk with a cane.
Is that a reason to ignore me, making yourself an inadvertent victim in the process?
When you ask how I am it doesn't make me feel bad,
It lets me know you care.
I know it's tough to ask,
And it's not much easier to answer, believe me;
But I'm no stranger to you, so where's the risk?

In a month or two,
When I see you again
I will be recovered and back on my bike;
That's what I have chosen to do.
You can either play a part in that course,
Or stay the one you're on and become part of the disease;
I've made my choice.

In a month or two, when I see you again,
I'll have forgotten this brief moment;
Will you?

It's beginning to feel a lot like Christmas!

2007-12-08T05:44:00.000-08:00

Our town will be having our annual Christmas parade this morning followed tonight by the 14th Annual Hospice Light up a Life celebration this evening; both of which signal to me that Christmas time is here. I take a particular sense of pride in both since I played a part in reviving one tradition and creating the other while on a volunteer city commission.

I was on the commission with a great lady, and local businesswoman named Roxanne, who had lost her daughter to cancer previously and I wanted to do it in memory of my mother, so we were both motivated to start up a tree lighting in town and Hospice of Santa Barbara was already doing a ceremony in Santa Barbara - it was a perfect fit. They were very open to extending their ceremony to Carpinteria as they were touching so many folks down here with their services. We have a huge Redwood tree, it has to be close to 40 to 50 feet tall, on our main street that had evidently been used as an unofficial town Christmas tree in the past, so we had our location. It was very easy to work with the generous property owner to allow the necessary electrical upgrades to be made with the city's cooperation. There is a well restored Victorian cottage on the property who sells various crafts and seasonal gifts, so the atmosphere is perfect and very "Christmassy."

The first year of the event it was basically a word of mouth attendance; it's now to the point that we are spilling out into the street. The City helps out each year by stringing probably two dozen 50 foot strings of lights with a boom truck. Hospice has star ornaments available for purchase either at the event or prior to at http://www.hospiceofsantabarbara.org/. They serve homemade cookies and cider and have turned it into a funding-raising vehicle, while maintaining the sentiment and home town feel - this group of dedicated, sensitive people are consummate professionals and volunteers who offer a tremendous service to people in the toughest of times and I have nothing but positive things to say about them.

For the first many years of the event I was master of ceremonies, then in 2001 I had to stop after my first surgery and handed it off to the capable hands of Catherine Ramok, a good and long time friend of mine who is a local media personality, so she lends vocal class as well as the fact that she is a board member of Hospice now; she was also touched by cancer when she lost her father some years back. Again, those of us who are challenged by or have been affected by the loss of a loved one can CHOOSE to curl up in a ball or roll up our sleeves against this disease in its many forms. Unfortunately, I'd guess that 100% of the attendees of the event have a vested interest in being there; just the act of being there is important as it demonstrates the kind of solidarity necessary to one day defeat the disease.

So today will be filled with emotion. It's a truly small-town parade this morning, and a truly big-hearted and emotional event this evening. It reminds me of why I love living in Carpinteria, as if I needed a reminder. Only one thing would make it better . . . "Let it snow, let it snow, let it snow!"

Update

2007-12-06T06:33:00.000-08:00

I love my wife, Anne, but Ativan is a close second today. It seems to be the most effective at getting me, and keeping me, sleeping at night; I actually got six hours of uninterrupted shut-eye last night! I’m still dealing with the effects of the steroid taper, so I’m dragging my left leg and arm a bit and feeling weaker than I should be, but this, too, shall pass . . . I hope soon.

I've also noticed improvement in my vision at different times of the day, which is consistent with the CSR condition, as well as the steroid taper and is encouraging at the very least. It will be so nice to be past this once I am, as it effects my balance and spatial orientation due to the depth perception issues that come with it. I just have to be patient, right? Yeah, shut up, okay?

On a different note, I'm trying to clean up my diet and cut back on empty calories. I actually tipped the scales at 203 the other day when I went to see my doc to talk about the MRI. I'm normally at 193. "Don't look at me, I'm hideous;" as Kramer said to Jerry. I haven't been this heavy in years! Fortunately I'm still stunningly handsome - see pic to the left.

Yeah, ha, ha, ha; so much for improving vision, right? Shut up, okay?

Hurry up and wait

2007-12-05T04:36:00.000-08:00

It often seems like cancer patients are forced to adopt this attitude/course when we are at a crossroads, as we are now with the treatment options before us. Are we being too passive in wanting to make sure that all the team members are on board for the next step? Should we, in this case in particular, just have the cyst drained this week and talk about it after with UCSF when my doctor returns on Monday?

To my mind that makes little or no sense. I have not only survived, but thrived, over the past almost seven years trusting the advice of the experts from UCSF, following that experienced advice and being measuredly aggressive in my/our treatment of the tumor(s). I think that my oncologist would agree with that assessment and I know that he shares my confidence in their expertise and values their input, while also sharing my/our desire to attack and continue to be aggressive in challenging the cancer.

We had the MRI scan sent up to UCSF yesterday. My doctor will look at them on Monday when he returns to the office. We meet with my local surgeon on Wednesday afternoon and will have a plan together by the end of next week to deal with the cyst. In the meantime we will stay the course; no matter how frustrating that will be, I believe it is the right thing to do.

MRI results and next steps

2007-12-03T18:29:00.000-08:00

Okay, we met with my local oncologist this afternoon to discuss Friday's scan. We are not much closer to an answer, I'm afraid, but I think we now have a plan going forward. It appears that there has been growth in the cyst and the tumor, but it's not certain how much in each due to the nature of the cyst . . . and its relationship to the tumor . . . hey, you think you're confused?!

We are now re-considering the three options already presented by my local surgeon and neurologist. The first two options can be done here in Santa Barbara and the third would have to be done at UCSF, because my surgeon does not do it:

Drain the cyst and watch it, follow up with MRI's to monitor possible recurrence.

Drain the cyst and leave a "shunt" so that it can keep draining if it refills without having to go back in each time.

Drain the cyst, leave a shunt and a chemotherapy agent in the tumor bed for ongoing delivery of drugs to the tumor.

At this point I'm ready to go for simply the draining the cyst, as it looks like the shortest path to ending the physical weakness that's so frustrating. The shortest path is not always the most beneficial, however. If it sounds like I'm talking in circles, welcome to my world.

The plan is to meet with my surgeon and discuss his options, as well as the chemo option which he can't do locally. If it looks like the third option is the best of the three after also consulting with UCSF, we'll go that way. Any way you slice it, there is more surgery in my immediate future . . . no pun intended.

Happy December 1!

2007-12-01T14:24:00.000-08:00

It's a cool, windy day, perfect for the first day of December as far as I'm concerned. I've always been a Christmas-aholic and I like my Christmas season cold so this is a good start. I'm a little, no, a lot disappointed that I'm not able to string up the lights as is my usual custom on today's date; I just am not steady enough nor can I see well enough to do so. I'm assured by Anne, however, that the girls will not be permanently scarred by this and that it's more important to get into and share the spirit of the season, which I'm trying to, and will, do. Hopefully I will be able to help pick out the tree.

Some encouraging news in that it seems that my eyesight has improved a little and I'm feeling more strength in my legs in particular later in the day. Caitlyn noticed as well. I just have to keep up my therapy exercises at home (a little undisciplined currently) and get back on the indoor stationary trainer asap! Speaking of noticing improvements or changes, Kelsey has always been very encouraging and vocal as I make improvements and I really appreciate and crave that from her; and her delivery of same is priceless - you have to be there . . . here . . . whatever.

I figured out that surfing the net in the evening and catching up with Leroy Sievers' blog (see link on this page), www.fatcyclist.com, and The Paceline rather than nodding off early on the couch makes me go to bed later and more tired; I went to sleep at 10:00 and slept in til 3:00 this morning, which is practically a record! The only problem is that I'm always finding some obscure cycling jersey that I need to have from Ebay.

I hope your Christmas/Holiday season is full of everything you hope it will be full of!

Oops

2007-11-30T05:43:00.000-08:00

I blew it on the MRI appointment time yesterday due to a problem with my calendar settings, which I suppose is better than having to say that I forgot the appointment altogether, indicating deeper issues, right? Nobody is more disappointed than me, believe me! Fortunately we were able to reschedule for this morning, so no great delays in results, although the clinic closes at noon on Fridays, so we may not have any preliminary word until Monday.

It's supposed to rain today, and already has this morning since I've been up (4:00am). Having been raised in Hawaii with the belief that rain brings good luck it seems like a good day for the scan after all, I'll take all of the positive vibes I can get, ya know?

No worries, I've put the bullet-dodging shoes on again and I'm feeling lucky!

I've got my dodging shoes on.....

2007-11-29T04:58:00.000-08:00

If there was ever a good day to dodge a bullet , today is it. I have an MRI to see the status of the tumor, the cyst, the edema and whatever else is going on in my noggen.

When I began the radiation treatments, Dr. Blount at the Cancer Center of Santa Barbara said that the aim of the radiation (no pun intended) was to eliminate both/all of the tumor on both sides of my brain. Between that and the CEENU chemo, there should be no growth in the tumors, which would mean that we would only need to worry about the cyst and how to address it. If there is new growth in the tumor itself it is a more serious situation, which I must be mindful of, but I'm not going to go there unless we have to and I'll continue to stay focused on the positive . . . and say a prayer or two. I won't hear from UCSF until tomorrow or Monday, which will be the guiding recommendation that we will follow in the long run as far as a next step or new course.

Big news may be coming regarding my involvement in the Amgen Tour of California in Santa Barbara . . . keep watching; I'm very excited about it.

I will update with preliminary results in tomorrow's post on all fronts.

For Patti Rubio

2007-11-28T06:14:00.000-08:00

I am standing upon the seashore.
A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean.
She is an object of beauty and strength, and I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other.
Then someone at my side says:
“There! She’s gone.”

Gone where?
Gone from my sight – that is all.
She is just as large in mast and hull and spar as she was when she left my side, and just as able to bear load of living freight to the place of destination.
Her diminished size is in me, not in her; and just at the moment when someone at my side says, “There! She’s gone,” there are other eyes watching her coming and other voices ready to take up the glad shout:

“There she comes!”

You always kept a smile on your face through the struggles and pain and you continue to be an inspiration to your friends and your family, who will be well-cared for by this community.

Etc., etc.

2007-11-27T06:59:00.000-08:00

No big news today, but here goes, anyway:

We saw my surgeon yesterday to check on the incision from the last biopsy; it has not healed completely so Anne has had to dress and change the site twice daily; he was pleased with the healing so she won't need to do that anymore. We talked about the scan at the end of the week in terms of getting some clue as to the status of the cyst and relieving the pressure in the tumor bed, which we think is the cause of the left side weakness. He again stated that we do have the option of draining it with a needle, or even inserting another kind of "Drain," which would remain in my head and continue allowing the cyst to drain, if necessary, but there is no guarantee it won't come back, so there needs to be a plan from the doctors; I'm hoping that will happen over the next week.

Today I'm thankful for long-handled shoe horns! My morning was made so much easier because of a shoe horn that Anne finally picked up for me yesterday. It is still very difficult to do fine motor skill activities on the left side, so even simple activities like putting on my slippers can turn into a frustrating challenge that can end up wearing me out before I even get out of bed.

I plan to call the massage therapist who works with my chiropractor as well as either the accupuncturist there or one that I've used in the past to do some complimentary therapy for my left side. I've had very good results with both in the past for other ailments; I think I deserve a massage or two, anyway! Don't know why I've waited so long to do both - ? As with the shoe horn, I hope one or both will help me fit into my day a little easier.

Uh, oh, we're going deep

2007-11-25T04:56:00.000-08:00

I have often considered my own mortality over the past few years - no surprise, I guess, under the circumstances.

The one question that I keep asking myself is; "What happens to my memories when I die?" It may sound strange, but it has always been kind of a major concern to me, to be honest. Do I get to choose which ones to take or leave behind? Keep any? Do I get to relive them all at any time or will they be whirling around me in an endless, blissful haze throughout eternity? If so, will there be popcorn?
I'm not talking about what I said to so and so yesterday; I'm talking about remembering holding Caitlyn on that first blustery morning of her life, or looking into Kelsey's proud eyes the day she flew her first kite on her own. It breaks my heart to think I may have to leave those behind in some way.

I'm hoping that part of the disease progression, if it goes that way, does not include robbing me of those prior to my eventual demise. I hate to go there, but no denial allowed here - there's not much point in that.

Just in case I do get to bring them in some way, shape or form, I think it my be a good idea to keep the focus on making positive memories for me to look back on, and for those I will leave behind to hold on to.

Another good day

2007-11-24T08:28:00.000-08:00

It's amazing what just one night's good sleep will do for your outlook.

I didn't wake up until 5:30, which is a record lately. The coffee was waiting me when I finally rose at 6:00, which is also a treat, and the sunrise was stunning to see, especially since I've usually been back in bed for my first nap by that time from waking so much earlier.

Good day strength-wise as well as emotionally yesterday, too. Anne commented that she thought I was standing taller and walking more confidently, which in turn makes me want to. The best thing I've done is to buy a pair of trekking poles with shocks and cane grips; they are much lighter and they don't make me feel like I'm walking with a "Cane" as such - it's those little mind games that can make the difference.

I've been having fun listening to the girls, my daughters and their cousin, Megan, laughing and being goofy while she is here. We love the fact that though they may only see each other on rare occassions, it's like they saw each other only the day before and the pick up right where they left off. I feel bad for her as I don't think she was ready to see Mr. Sta-Pufft, as I have previously described myself. She is very sweet about coming out to see how I'm doing when she is in the other room with the girls and she is just a bright spot in the holiday weekend, period. I'm hoping that she will come down as frequently as possible from college to visit us. Megan will go to my dad's house here in town tonight and then she'll fly back to school in the morning.

Today if it warms up a bit I'll go to our community pool for a work-out. Then tonight we'll probably rent a movie or have some kids over; nothing fancy, but it sure works for me.

No more bad days. At the end of this week I'll have another MRI to check the status of everything and go forward. No more bad days.

Giving thanks

2007-11-22T07:42:00.000-08:00

Good morning and Happy Thanksgiving!

Where to begin? How do we thank all of the people who have been there for us over the course of our journey with, through and beyond cancer? Especially over this past few months of difficult and frustrating recovery. Of course, none of you are looking for thanks and none would feel like they deserved it - it's just what we do for each other as friends and family; and therein lies the secret. We simply do it out of love.

I'm thankful for the perspective that cancer has given me.

I am especially grateful this year for the family relationships that have become stronger than ever before. For the opportunity to spend Thanksgiving with my niece, Megan, who will be flying in to wait on me in particular for the next couple of days . . . oh, did I forget to tell you that, Megs? Wear your running shoes, babe.

I'm so thankful for my team of doctors and other professionals and for the amount of time that their families have sacrificed due to their commitment to compassionate care for their patients.

I'm also thankful for the support that surrounds my daughters at school; and that extends to friends' parents, our extended family. I can't tell you how much you all mean to me. My biggest concern has always been that they are looked out for and made to feel like they are not in this alone and these angels have gone above and beyond in so many ways each day.

I would be terribly remiss if I did express my very deep gratitude and love for Miss Julie. You are absolutely the best thing that has happened to my daughters. Knowing that you are in their lives and that you care about them as deeply as you do is more comfort to me than I can express in words. You have provided the one constant, dance, that I'm very sure has saved them when they felt doubtful and scared. I don't believe I could find a better role model than you to demonstrate self-confidence, grace, and unselfish love. I also appreciate your family's welcoming of ours - sometimes I feel like our name should be Whittaker-Rubio-Shamblin!

Not to forget the Whittaker-Medels, another whole story in itself. When I was first diagnosed in 2001 an foundering in "what nows?" a voice came through at just the right time saying, "Let go and let God;" thank you for that, Andi. Ron, the afore mentioned Go to Guy for God, is a part of this group of of lovingly crazy people take care of us, feed us extremely well on occasions too humorous to mention, and who, no matter what time of day or night, would be there in a warm heartbeat to help. I have a special place in my heart for Albert, who I take great pride in now calling Papa.

I really did just set out to do a short blog today, honestly. Somehow there is no economy of words when it comes to love, and perhaps those terms are mutually exclusive by design. Give thanks and give love today.

Faith and God

2007-11-17T14:56:00.000-08:00

For as long as I can remember I've had people trying to tell me how to pray, when and to which God; but I never really found my voice, faith or spiritual peace, for that matter, until cancer found me. I'm not talking about the voice says, "Uh, oh, I need to find God and quick;" I'm talking about the "First-name-basis," that God and I are now on; the one He was waiting for me to use.

I was raised a Roman Catholic for the first eighteen plus years of my life; alter-boy, fish on Fridays, church every Sunday unless I was on my deathbed and all. I have great respect for my Irish Catholic father, who always did his absolute best along with my mother to raise my brother, sister and me to follow the moral and spiritual teachings of the church, and I know that he is proud of the way we have turned out in that regard, because he has told us so. Though I have found my own "Faith path," for lack of a less "New Age" (very tired of that ridiculous term, by the way) term since I still go back to that compass for the firm and basic guidance in my life. I love you, Dad, and thank you for that firm foundation you provided for me.

I've heard it said that religion is a man sitting in church thinking about fishing, but spiritualism, or faith, is a man fishing thinking about God; that's where I am, and what could be better? I believe in God and my relationship with Him is sacred and very personal to me. I am no longer a "Practicing Catholic," which I've always found an odd term; does practice make perfect at some point? The main reason for that, among a long list, is that I found myself reciting the prayers in church mindlessly, kind of like the fisherman (and yes, I do see the irony of the term), which is not scared or personal, and certainly no comfort to my soul. I have not been born again and, with no offense or judgment intended to my friends who have accepted Jesus in that way, don't feel the need to be; I accepted His love a long time ago. I believe it is more important to try to live life as, "Christ-like," as possible than as a Christian, Catholic or under some other such specific label, endeavoring to follow His teachings of love and forgiveness to the best of my spiritual ability than as a member of an organized religion filled with rules, infrastructure and dogma. I don't believe that it is up to anyone here on Earth to tell me how to talk to God, or how not to; we'll all know in the end if he heard us or not, right? I'm confident I'm doing okay on that front judging by all of my blessings.

I've occasionally been asked by close friends, "Are you ever mad at God for your cancer, or asked yourself, 'why me?'" I honestly have never thought of it in those terms, as though this is some sort of punishment, or test of my faith; a compassionate God, my God, has no interest and too much love for that kind of pettiness. It is what it is, and for that matter, why not me? As Mother Teresa, who we now realize even had her doubts at times, is often loosely quoted as saying, "I know that God will never give me more than I can handle; but I sometimes wish He didn't have so much confidence in me." I've felt that way once or twice over the past six plus years. Most of he time I simply feel so blessed by Him for giving me a supportive and loving family and a very satisfying life full of love and meaning. For letting me in on the gift of perspective and for letting me rest my problems and burdens on Him when they are too much for me to bear. A very good friend, Ron, and someone I consider to be my, "Go to guy," for God, told me not to worry, that God has big shoulders for a reason and to never hesitate to ask for help. God has never let me down and never would, and that is faith.

If there was a moment when I realized what was truly up, it was shortly after I first came home from UCSF in 2001 after my first brain surgery and I received a call from my friend, Jim. Jim is "Deep," in the very spiritual sense of the word. We talked about cancer, my tumor surgery, but also talked about the very spiritual sense of it all. I know that the experience is different for everyone, but there is an awakening that can take place if you're open to it, and it can be difficult to describe unless you've gone through it. I told him how grateful I was to be alive and how the world looked very different to me after what I and my family had gone through. He listened intently and at the end of the conversation said, "Welcome home, Tom." I thanked him and he said,"No, welcome home, Tom." I again said thanks and hung the phone up. It didn't dawn on me what he was actually saying to me until I had hung up. When he picked up the phone to take my call back he was laughing, knowing what was coming and trying to slow me down as I talked for another twenty minutes excitedly about what he had said and what it meant. He realized that I "Got it," or was starting to at that point anyway, and was welcoming me to a new part of my life.

So that is my take on faith and God in an appropriate week to be thankful for my many blessings. I hope you enjoy your week. I hope it's filled with friendship, family an love, as mine will be.

I saw an interview with a quantum physicist a while back in which he was asked to describe God. His answer was another one of those, simple "Lightbulb" moments: "Asking me to describe God is like asking a fish to describe water."

Perfect.

Latest News and Thanksgiving

2007-11-16T16:24:00.000-08:00

Remember Mr. Sta-Pufft, the bloated marshmallow character from Dan Akroyd's noggen in Ghostbusters 1? That's me this week; the thick joints, swollen face and neck, etc. that clearly identify those of us not taking steroids to illegally excel in sports, but to offset the effects of what are often debilitating treatments designed to save our lives . . . perspective, right?

It's foolish and vain to think of it in this way, but that was one of the side effects I hoped I'd never have to see, or have my girls see in/on me. My oncologist has recommended that I cut the dose in half, which I did last night, and I expect it to take care of it, as I assume he does. It may well help my eye condition as I have read that steroid use during the onset of CSR http://www.cushings-help.com/csr.htm may be contraindicated, so it may turn out to be a good course all the way round.

Speaking of the eye condition, it has not become worse, but has not improved, either - I know, I know; glass half full, half empty - I'll still go with half full. I had a scan this past week and will meet with the specialist this coming week - hopefully not for him to simply encourage patience over the next few weeks or, God forbid, months while it heals itself, but to schedule a corrective procedure. There is nothing I do that is not handicapped by my vision problem - including this blog! The things we're used to taking for granted are often so very important.

I've missed all week at Rehab due to a fall last Thursday morning at 1:00am in our room, and onto the corner of my nightstand; it was the worst fall I've taken yet and I'm surprised I didn't crack my ribs, I hit that hard. I think part of the reason is that I took an Ambien CR, which is great at putting me to sleep, but also makes me groggy if I wake in the middle of the night and don't take the time to clear the cob webs out before standing up. I've been too sore to do anything more than arm raises, stretches and a little pool work yesterday, but I'm looking forward to working out in the pool this weekend as the weather looks to be warm. I was told in my first go-round with brain surgery and recovery, "If you don't use it, you'll lose it," and I know it's true just from the hinderance I'm now facing from post-surgical atrophy on my left side.

I'm looking forward to the Thanksgiving Holiday this coming week, which may sound strange after all of my griping above. In actuality, I feel that it's not only okay, but essential to acknowledge the discomfort and disappointment of cancer, it's recovery course frought with setbacks and eventual survivorship in order to keep your sanity through the process. There is, after all, a necessary grieving process for your former, cancer-free life that is now lost. You are under no obligation to be, "Okay," about that or to feel a responsibility to others to always stay positive; your only responsibility is to healing yourself and by doing so, you will inadvertantly heal others. Once I realized that it freed me to move forward in my recovery the first time around and though this second recovery is clearly harder and more frustrating than the first one for my family and I, I still feel so blessed and lucky just to be here among family and friends. This Thanksgiving will be physically challenging, but I'm betting it will also be one of the most spiritually fulfilling for all of us to be sure.

Jean Whittaker

2007-11-12T06:57:00.000-08:00

On November 12, 1989, my mother, Jean Whittaker, passed away from a Glioblastoma Multiforme (GBM) brain tumor. She enjoyed her life to the fullest and fought so valiantly for many years aided my father's unwavering courage, support and love. In the end she died peacefully at home with her family watching over her, and her us. I carry her strength and love with me every day.

Cycling Part 1

2007-11-10T05:23:00.000-08:00

Okay, it's about time to talk about cycling, part 1.

I have always enjoyed biking, except for first time I showed my parents I could ride a bike. I was a timid mama's boy, scared of trying new things and that included riding a bike, which is why I didn't do so until age 9 . . . yes, 9. My cousin, Ann, came over for a visit when we were living in Hawaii (grew up there 1st through 8th grade) and taught me to ride at my elementary school. I was very excited to have mom and dad see me ride that evening, so we all went down later in the day. I climbed on my gleaming (from lack of use) blue Schwinn Stingray with banana seat (I wish I still had it now) and proceeded across the grass. Now, before I go any further, it's important to note the amount of pressure that was on me, not from my parents, but from my own nerves and pride. There was a single tether ball poll in the park that day, my friends, and I had evidently either insulted or offended it at some point in my semi-pro tether ball career, because I fixated on it the moment I mounted the bike . . . over 50 yards away . . . and squarely ran into it. It was a deeply scarring experience . . . for my parents. I was not hurt except for my pride and it lives on now in infamy, and at holiday family parties . . . great.

But once again, I famously digress. I became interested in, and a fan of road cycling/racing in 2001 after reading,"It's Not About the Bike," by Lance Armstrong. If you haven't read the book, I recommend it, cyclist/athlete/caner survivor or not. It's an honest account of the rise of one of the most, if not the most, accomplished athlete of our time. It's also a story of self-discovery and triumph over incredibly overwhelming odds that one man went through, emerging, not unscathed, as a reluctant hero now committed to making a real difference with the Lance Armstrong Foundation (LAF), an organization I am firmly committed to supporting. There were things that Lance had to say in that book that really helped me to get my head on straight, once they sunk in, that is. Although I still am not able to say, as he has in his case, that cancer is the best thing that has happened to me, as I do say in the opening paragraph on this page I definitely feel that it has given me more more than it's taken away.

I've found a new self-empowerment and confidence through my love of cyling, not to mention a great group of friends; this began for me in early 2005. I read about the annual, "Ride For The Roses," event in Austin, Texas (if you've never been there, you need to go!) to benefit the LAF and decided to train for the 2005 century ride (100 miles in a day). The longest ride I had done to that point was 30 miles with a group of work friends in a charity event for MS on a hybrid/comfort bike. When I got serious about training and realized how much I enjoyed cycling, I dropped some dough on a true road bike, which was the best thing I could've done at that time to keep me motivated towards my goal. Training went very well and I stayed on a six-days on, one-day off per week ride schedule religiously, steadily seeing performance and confidence gains along the way. I was also able to raise over $7,500.00 for LAF due to the support and generosity of friends and family

In September I travelled to the event. To go into the kind of detail this deserves would take another full posting, which I will do soon, suffice it to say that it was the most challenging physical event I had done and by far one of the most rewarding on so many different levels. There is nothing like being in a room, or on the road, with the survivors, care-givers and others; people who, "Get it," in short. I was, and am hooked . . . for life. I have done many rides since, but none compares to that first ride. I've also accumulated a wide variety of spandex, lycra and other skin-clinging pieces of ride memorabilia, much to the chagrin of my girls.

More on cycling this week; make it a good one.

Team Players

2007-11-08T18:12:00.000-08:00

Over the last few days, Anne and I have been doing a lot of thinking. It's often not clear what the appropriate course is for treatment; how aggressive or passive to be depends upon the possible outcomes presented; it comes down to who you trust. Not who you like best or who has the warmest bed-side manner, but who has the most experience to guide you to the outcome you desire with the fewest problems and the greatest likelihood of success. In short, there is no substitute for solid, experienced team players. I like my doctors, thankfully, but would not be afraid to challenge them if I thought they were dropping the ball on communication/information, either with me or the other team members, and they know it. There is no substitute for self-advocacy and you won't survive without it, period.

Case in point:

My local neurologist and surgeon would like for us consider some new options for dealing with the cyst which they feel is the culprit in my physical weakness lately; if successful, the results would be virtually immediate, but possibly not permanent and not without some degree of risk, as with any surgery. The other, "Advantage," of this would be the possible installation of a catheter for continued drainage and possible future delivery of chemotherapy agents directly to the tumor bed.

The doctor I consider to be my team leader at UCSF is advocating waiting for the end of November and the scheduled MRI results, at which point the edema should subside or even disappear, but possibly not the cyst. We'd go up and see him with the films at that time for a face to face visit and to plot a course from there. He told my oncologist that he did not see the risk/reward payoff in the surgery and that he would not recommend it at this time.

My local oncologist, Gregg Newman, who I consider a friend as well, is on the side of the UCSF team leader, for the simple reason that he deals with probably five cases of this in a week, compared to the five Gregg may see in a year . . . makes sense to him. My radiation therapist is of the same mind; to follow the lead of the most experienced team member. Makes sense to me too and it's what we're going to do.

So it comes down to trusting your team, of which you are the leader. You can't make the decision if you don't have or know the variables, so you need to ask questions and make sure they're answered to your fullest satisfaction and understanding. If you're confident that you have a competent team with a vested interest in your success, i.e., your survival, it makes it a lot easier and lets you sleep better . . . or so I've heard . . . see previous post!

Jen McDevitt Story

2007-11-05T11:01:00.000-08:00

This is a great story! http://www.msnbc.msn.com/id/21637695/from/RS.1/ It's people like this, refusing to give in, that inspire me to get back on my bike!

Way to go, Jen! One step at a time.

Insomnia again

2007-11-05T04:21:00.000-08:00

Okay, it's 4:23a.m. and I'm in front of my computer after pretending to sleep for the past two hours. This is bad because it means that I won't be as fresh as I should be for rehab; depsite the fact that I wll nap mid-morning to, "Get caught up," which is a myth, as you can't make up for lost sleep, or so the sleep specialists now tell us. Oh, goody.

I used to be a sleep specialist. I could sleep through anything; earthquakes, thunderstorms, wind, you name it, I slept through it. Go ahead, turn the volume up; I dare you to try to wake me up . . . ain't gonna happen. The only time I did wake up was years ago during one of our larger earthquakes in L.A. Our youngest daughter, Kelsey, was still a baby in her crib in our room and at that time I was normally sleeping on the right side of our bed near the open doorway. Kelsey has always been sensitive and almost hyper-aware of her surroundings, which is one of her many attributes as she seems to have the sixth sense that people talk about - just like Anne. She had been restless that night, so I went into the other room into the spare bed. When the quake hit it was strong enough to jar me out of my normal comatose stupor and I (with cat-like reflexes) leapt into action . . . forgettting that the spare bed was up against the left wall in that room and almost knocking myself out as I jumped into the wall; this was long before Fred the tumor, too, so I had no built-in excuse, as I, "Conveniently," do now. No permanent damage was done to the wall or my body . . . only my pride . . . but it has made for good laughs since.

Although I am wrestling with the insomnia, I would be lying if I said that I did not enjoy the time it creates to write this blog, drink my coffee and reflect on my blessings, of which I have many. It is both fun and therapeutic, just as I had hoped. Make it a great week!

Dodging bullets

2007-11-03T09:33:00.000-07:00

This is a familiar term for cancer patients; it's how we feel each time we go in for a scan, blood work or other diagnostic test seen as an indicator of our status, with good results. It is the sigh of relief exhaled between my wife and I while walking to the elevators from my doctor's office. I don't care how confident, positive or in denial a patient is, there is no substitution for the words, "Everything looks good," from my doctor - who has learned that after hello, the results are the onlty thing we are concerned with hearing about - be they good or not so good.

Cancer may leave your body, but it never leaves your life. In our case, it has not left my body and in fact has more firmly embedded itself with the new tumor and all that comes with it. This last few weeks has been rough on us as we have been dealing with setbacks and frustration with my recovery. I have developed an eye condition called CSR -http://en.wikipedia.org/wiki/Central_serous_retinopathy - that's very annoying at best. It makes it appear as though there is a fluid bubble-type distortion in my right eye with a dark spot in the center of my field of vision. The good news on this is that it is not related to the tumor and will likely clear up on its own. I'll be seeing a specialist for follow up, but am relieved that there is no connection other than that it has likely been brought on by stress from all that is going on.
The left side physical weakness I've been experiencing is likely caused by a cyst which has developed in the radiation treatment area. That's the other irony in that it seems like you're damned if you do and damned if you don't with regard to the treatment protocol you follow. What doesn't kill you will likely cure you in other words! That's an overstatement, of course, but most patients I know will echo that sentiment. My doctor at UCSF said he'd like to give everything time to calm down post-surgery and review the November 29th MRI scan before we decide on a next step, if one is even necessary at that time. I have asked for agreement/consensus on that from my other doctors and unless there is objection or counter-recommendation, it seems to be acceptable - as much as the wait and see course can be, "Comfortable," that is.

And so I continue to practice patience for my recovery and for myself . . . practice, practice, practice. Have I mentioned my wife is a saint? I will let you all know when the sainthood ceremony will take place; I think it may involve large quantities of Margaritas. What doesn't kill you will cure you, right?

Last Day of Radiation Treatment

2007-10-23T06:15:00.000-07:00

It's over, for now anyway. No more daily, "zappage," as I call it. So what now? Well, I'm due for another dose of CCNU (http://www.chemocare.com/bio/ccnu.asp) today and then to check in with my Radiation Oncologist in three weeks, then my Oncologist in 5 weeks for an MRI to gauge the results of treatments to date and go forward.

It's kind of strange to say, but in some ways I'll miss my daily visits to the Cancer Center of Santa Barbara. Anne and I have nothing but positive things to say about the staff, the protocol, and the level of care that we received. I have formed attachments to the staff who are working to save my life, basically. I will miss my brief conversations with Ivan about his desire to get back into cycling (I'd like to believe I have something to do with that!), as well as my ribbing of Kim about her comedy material; both are warm, caring people who took an interest and sense of pride in my recovery, as did the entire staff. I don't know how they do it, frankly; they are professional people and yet they let themselves care on a personal level - extraordinary.

The only drawback of the treatments has been the attempt to do a slow, tapered reduction in my steroid (http://en.wikipedia.org/wiki/Dexamethasone) level, which has resulted in a roll-back of my physical progress in rehab by a good two to three weeks in my estimation. It is nobody's fault; the reason they call it, "Practicing medicine," is that nothing is exact and everyone's reaction's are individual depending on their physiology.

The level of frustration that the taper caused, however, and my inability to deal appropriately with same, has not been fun . . . for anyone in our family, I might add. I think the natural reaction is to take that frustration out on those closest to us because . . . well, I don't really know why that's the case and there is certainly no good excuse for doing so. A good indication of Anne's frustration level was apparent when I noticed a giant-sized bottle of, "Stress Formula Body Wash," on the bathroom sink this morning. I will try to improve my attitude and to stop needing to apologize for things that I say; no guarantees, but I will try!

Make it a great day.

The Choice

2007-10-21T05:59:00.002-07:00

I think about cancer every day; about how I will beat it.

A friend of mine sent me this anonymous quote a few weeks after my surgery; it very clearly describes my philosophy on cancer and life:

“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.”

I'm always amazed when people say things like, "I can't believe how strong you and Anne are in the face of your fight." Lance Armstrong, in his first book, "It's Not About the Bike," had this to say:

"We have a choice both medically and emotionally. . . give up or fight like hell."

For us it's that simple. Giving up was never, and is not now, an option. I tell people who ask all the time that they have an active choice to make about being a victim or a survivor, and I do believe there is a specific moment in which you are conscious of that decision. If you choose to give up and believe you are a victim, you are - throw in the towel, forget treatment, forget hope, it ain't gonna happen without it! If we choose to live, to not only survive but to thrive, I believe we will.

Your steadfast belief in that survival decision will carry through your treatments, recovery and through the rest of your life with cancer. You have to, have to, believe it. As has been said, again by Lance Armstrong (who if you have not guessed by now is a personal hero of mine - more on that in future posts), "Cancer my leave your body, but it never leaves your life." Just because it never leaves your life, doesn't mean it controls your life, though. You have the power to decide how you will face the challenge. You have the power to live your life on your terms.

Never give up.

Fred the Tumor

2007-10-19T13:58:00.000-07:00

When I was first diagnosed in 2001, my daughters were 10 & 7 years old. One of the toughest things for me was to attempt to let them know what was going in while not overwhelming them with information and thus scaring them. My wife, Anne, and I both felt, and continue to feel, that it is important to bring them along on this journey, to tell them the truth to the extent they can understand it in age-appropriate terms. They came to San Francisco for the initial craniotomy with Anne, my father and his wife, and visited me when I couldn't talk to them, let alone get out of bed yet. Looking back we remain convinced that we did the right thing - for us and them.

In order to try to explain what the tumor was, I wrote two poems; "Fred the Tumor," and, "What's a Seizure." I'm not sure who was helped more by the poems, them or me, but I'm so glad I did it:

Fred the Tumor

A while back I felt dizzy
My leg and arm got weak
So I went to talk to the doctor about it,
And asked her to take a peek.

They took a special picture,
That looks like inside-out,
It shows them what’s inside of me,
When all the lights are out.

The doctor said I have a tumor
That’s sitting inside my head.
She gave the thing a special name,
But I think I’ll call him Fred.

Fred is like a piece of fat
That lives inside my skin.
I wonder what he’s doing there,
And how he first got in?

We took another picture
That was really kind of neat,
And let my doctor look at Fred
So the two of them could meet.

But Fred was playing hide and seek,
Or so the doctor said,
So they put me in the hospital,
To look inside my head.

And when they did they saw him there
Some say sitting all alone,
They took a little pinch of him
And up my head was sewn.

The doctor says Fred’s an easy one
And he’ll soon be on his way,
So until he is we walk step by step,
Through each and every day.

We’ll sleep, we’ll wake, we’ll live and learn,
We’ll wrestle and we’ll play;
Fred is just a short-term guest
Your daddy’s here to stay.

What’s A Seizure?

Remember what I said to you
In the poem about Fred,
When I said my leg and arm got weak
And I was dizzy in the head?

There’s a name for all of that
And the doctors are real sure
That what made me feel so weak and weird
Is what they call a seizure.

A seizure is the way that Fred
Says, “Hey, remember me?”
They don’t hurt, and they don’t last
But I might look silly.

You might see my eyes get big
Like when I say Boo at night
Or you might see me sit down quick
If my leg does not feel right.

I promise I won’t quack or bark
Or dance and hop around,
But I may move in funny ways,
Or make a funny sound.

The doctor gave me special pills
To keep the seizures away;
They are really working well,
And I take them every day.

Until they’re gone, doc says don’t drive,
Walking’s good enough.
I really don’t mind it all that much,
‘Cause I get to see more stuff!

Seizures come and then they go,
I don’t know when or where,
But I do know there’s no need to fear
If you happen to be there.

The best thing you could do for me
Is simply hold my hand,
In a moment or two I’ll feel just fine,
And be back to normal again.

My name is Tom

2007-10-19T07:14:00.000-07:00

Welcome to my Blog. It has been created to keep friends and family updated about my family's cancer challenge. Be sure to read the latest postings, as I will try to update them as often as possible - no great words of wisdom or guidance to be sure, but you may find something helpful.

Probably the easiest way to do introduce myself is with a timeline of both the cancer and treatment and then fill in the story from there - so here goes:

November, 2000 – First of five focal seizures prior to surgery.

January 19, 2001 – Initial diagnosis of a “Mass” in my left frontal lobe.

January 25, 2001 – Biopsy done at Cottage Hospital in Santa Barbara.

March 1, 2001 – Biopsy results back from Mayo Clinic confirming initial diagnosis of benign Oligodendroglioma Grade II in the left frontal lobe. In my surgeon’s words, “If you have to have a tumor, this is the one to have.”

April 2, 2001 – Successful craniotomy at U.C. San Francisco Medical Center to remove as much of the tumor as possible.

June 27, 2001 – Started my first round of chemotherapy, Temodar, at home; 12 more to go on a clinical trial through UCSF.

June 2001 through October 2005 – periodic MRI scans to monitor the tumor, all have been stable to this point.

November 2005 – MRI shows some activity and the recommendation from my local doctor and UCSF is to do another year of Temodar and continue to hold off on radiation, keeping the option open for the future. During this year, ending in October 2006, the tumor is held at bay by the treatment.

February 2007 – New mass is found on the right side thanks to careful monitoring of MRI scans. The consensus by my medical team is to try Temodar one last time.

August 2007 – No success with Temodar on new growth. It is determined that a biopsy is needed to confirm tumor type and a new treatment options.

September 2, 2007 – Successful biopsy done at Cottage Hospital in Santa Barbara with pathology reporting the new tumor is the same type, Oligodendroglioma, but one grade higher and more aggressive. Not as bad as it could’ve been, thankfully. Pathology confirmed by UCSF one week later.

September 12, 2007 – Six weeks of Conformal Beam radiation begins at Cancer Center of Santa Barbara in addition to Lomustine chemotherapy.