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?
December 31, 2007
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?
December 30, 2007
I'm tired. Tired of feeling slow and gimpy. Tired of no riding. Tired of waiting for the next treatment and result.
December 28, 2007
December 27, 2007
December 26, 2007
December 25, 2007
December 23, 2007
December 21, 2007
December 20, 2007
That must be why they call it "Practicing medicine."
December 19, 2007
December 18, 2007
This is an incredibly powerful entry from Leroy today - see the link to his daily blog in the links section of this page....
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
December 17, 2007
"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.
December 16, 2007
December 14, 2007
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?
December 12, 2007
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.
December 10, 2007
For more information on the treatment please read:
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.
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:
Stay tuned and keep the faith!
December 8, 2007
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;
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!"
December 6, 2007
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?
December 5, 2007
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.
December 3, 2007
We are now re-considering the three options already presented by my local surgeon and neurologist. The first two options can be done here in Santa Barbara and the third would have to be done at UCSF, because my surgeon does not do it:
- Drain the cyst and watch it, follow up with MRI's to monitor possible recurrence.
- Drain the cyst and leave a "shunt" so that it can keep draining if it refills without having to go back in each time.
- Drain the cyst, leave a shunt and a chemotherapy agent in the tumor bed for ongoing delivery of drugs to the tumor.
At this point I'm ready to go for simply the draining the cyst, as it looks like the shortest path to ending the physical weakness that's so frustrating. The shortest path is not always the most beneficial, however. If it sounds like I'm talking in circles, welcome to my world.
The plan is to meet with my surgeon and discuss his options, as well as the chemo option which he can't do locally. If it looks like the third option is the best of the three after also consulting with UCSF, we'll go that way. Any way you slice it, there is more surgery in my immediate future . . . no pun intended.
December 1, 2007
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!
November 30, 2007
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!
November 29, 2007
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.
November 28, 2007
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 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.
November 27, 2007
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.
November 25, 2007
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.
November 24, 2007
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.
November 22, 2007
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.
November 17, 2007
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."
November 16, 2007
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.
November 12, 2007
November 10, 2007
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.
November 8, 2007
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!
November 5, 2007
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!
November 3, 2007
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?
October 23, 2007
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.
October 21, 2007
but how we react to what happens;
not by what life brings to us,
A positive attitude causes a chain reaction of positive thoughts, events, and outcomes.
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.
October 19, 2007
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.
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.