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?