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!