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
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?
ABCC
December 30, 2007
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.
December 28, 2007
Another good day ahead.
December 27, 2007
Back on track
December 26, 2007
Worn out!
December 25, 2007
Merry Christmas
December 23, 2007
The day before the day before . . .
December 21, 2007
Small victories . . .
December 20, 2007
Practicing medicine
That must be why they call it "Practicing medicine."
December 19, 2007
Now it's official
December 18, 2007
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.
I'm ready for success!
December 17, 2007
Approved!
"People who need people . . . "
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.
December 16, 2007
Cycling Part II
December 14, 2007
Update
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
Holding pattern
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.
December 10, 2007
Okay, let's go!
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 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
Just say hello
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!
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
Update
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
Hurry up and wait
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
MRI results and next steps
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
Happy December 1!
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!