Happy New Year!

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

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

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.

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

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!

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

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 . . .

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 . . .

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

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

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

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!

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!

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 . . . "

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

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

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

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!

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.

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

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!

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

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

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

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:

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


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


3. 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!

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

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.....

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.