Sunday, August 21, 2005

Vines – As I drive on the highway or make my daily circuit around the WMAL field on my morning run with Kiara, my mind often turns to the wild vines that proliferate unchecked, often overgrowing beautiful trees and bushes. By aggressively striving for the best positioning to sop up the sunlight, they eventually starve the “desirable” greenery, robbing it of both direct sunlight and water. In some places in the field these vines cover everything with a soft green carpet of leaves draping and eventually smothering whatever might be struggling to grow underneath them. Virginia Creeper, Honeysuckle, Kudzu, wild Morning Glory, wild Blackberry, and wild Grapes all have aggressive habits and are able to thrive in the hot humid summers of Washington. Some of these like Honeysuckle and Morning Glory can even be pretty or send off heavenly scents (I adore honeysuckle and as a child would pick the flowers and suck out the “honey”). In my mind I liken these wild vines to metastatic cells – cells that have the ability to take over, eagerly consume nutrients, and eventually disrupt the function of the organs they have chosen to populate. Chemotherapy, of course, is “weed control”, with the same philosophy of targeting the more aggressively growing plants, but, if used in excess, can also damage the desirable plants (i.e normal tissues). So I have to hope that my personal consumption of “weed control agents” can keep my metastatic cells in check and permit my organismal garden to continue to flourish.

Friday, August 19, 2005

In addition to my family, I have many wonderful friends who continue to give me support through this journey and without whom maintaining my positive attitude would be more difficult. I thought it important to share two emails I have received recently because they are so special and give me so much hope.

The first is from Mike Sporn, my dearest friend and scientific colleague for so many years at the NIH. He is the person who first started describing my response as “non-Gaussian” and convinced me to stop reading about the statistics of this disease. He recently wrote to me about “miracles”.

Definition: A miracle can be defined as an an ultra, ultra, ultra non-Gaussian event. It has to be at least 17 (I like prime numbers) standard deviations from the mean to meet this criterion, so quite clearly Anita qualifies and meets the criterion of "miracle". It is sort of like, not just a trifecta, but an octafecta, in which someone could pick the winners of EVERY race at the track on a given afternoon (I think there are 8, but a heptafecta or nonafecta would also qualify for a miracle). You can ask Bob if anyone has ever won an octafecta; I think that must be at least 17 standard deviations from the mean; the odds would indeed be very great. So every day, you continue to beat the odds. So continue to enjoy life today, tomorrow, and this weekend. Unfortunately for all of us, Dr. Gauss will ultimately have his way, but we can have one helluva run before the master odds-maker has his due. Anita, you are already the winner of an octafecta, so go for the nonafecta and the decafecta, too.”

Then an email from my cousin Sally, who herself last year experienced a truly miraculous recovery from a potentially quadriplegic neck injury, has endured 3 months of wearing a “halo”, and then again a spinal fusion, but has never lost her zest for life and especially her humor. She writes,

“How precious a day can be – in ways no one would ever exactly put on a wish list, perhaps we have both been given the gift of experiencing the pure joy of knowing that at times a moment and a lifetime can be almost interchangeable”.

These and so many other emails and cards sustain me and keep my mind on the positive! focused on HOPE!

Monday, August 15, 2005

Beach balm…Once again we are here at the beach. Since we had to cancel our Cayman Island vacation, we have decided to take a few long weekends here in Bethany Beach. This morning I took a long beach walk and delightful swim and just soaked in the wonderful family life and pure fun that characterizes the beach scene here. Everywhere you see grandparents, parents, and little kids all down on their hands and knees building sand castles, moats and tunnels and then screaming with delight as a wave comes in and fills the channels with water, or possibly destroys the whole construction. Here and there one sees people diligently using their long-handled plastic shovels to dig deep holes or to pile sand on gleeful children so that only their heads stick out – the rest of their bodies buried and immobile. Then, of course, there are the people tossing a football, playing paddleball, and the young kids riding skim boards into the waves and then doing flips as the wave propels them skyward - such joy. The scene is rounded out by the appearance of the Snocone truck clinking out in Xylophone tones “It’s a small world after all” (I don’t think that the truck design has changed in the 60 years that I’ve been coming to the beach – just the music is different). And just as I was soaking in all of these scenes a plane flew overhead trailing a banner with the statement: “Life: live it like you mean it” (an advertisement for Bacardi Rum – what the rum has to do with it, I don’t know).

However the best part of being at the beach is being with Dorrie and Jeff. We four were dating partners in high school and continue to enjoy each others’ company now almost 45 years later. Bob is mending well – he even went with us for a boat ride/ dog swim/fetch activity yesterday afternoon and today he drove the boat! Still 5 more weeks to go until he can put weight on the foot.

Tuesday, August 09, 2005

Today was a landmark day! Dr. Marshall was so visibly pleased at my obviously healthy status that his enthusiasm spilled over to Bob and me. He also agreed to start a new treatment that may prove interesting. – I have been corresponding recently with Judah Folkman, the “father” of the anti-angiogenesis therapy that constitutes my present treatment. “Anti-angiogenesis” encompasses approaches that cut off the blood supply to a tumor and thereby “starve” it. His lab has measured certain enzymes (MMPs) in my urine that promote angiogenesis and found them to be elevated, indicative of ongoing disease. So, based on his experience with a patient with a hemangioma (an abnormally dense cluster of blood vessels), he has suggested that I be treated with doxycycline, a commonly used antibiotic that is now known to block production of some of these enzymes. He thinks that it may even help my ascites. So the experiment has begun!!! Never did I think that I would be the experimental animal, but I find it quite exciting.

So exciting in fact that, in a fit of optimism today, Bob reserved a week for our entire family at a Villa in Cozumel for Springbreak next April! It has over 250 ft of private shoreline, walk-in access to snorkeling and scuba, and a seaside pool for the kids to swim while we sip margaritas and eat guacamole! Just thinking about it makes me so happy that it warrants the expenditure! I am so high! After all there are always new drugs to try and some of them are likely to work for me.

We’re heading for Bob’s 63rd birthday this weekend with great optimism. Despite the fact that I have cancer and he is functioning with only one foot, we still feel young and vigorous – at least in our minds. Bob (and I) has survived the most difficult stage of his recovery and he is now considerably more adept with the crutches. I can always hear if he’s moving around because of the clinking of the crutches (sort of like the “tick” of the crocodile that swallowed the clock in “Peter Pan”). I gave him a pair of leather gloves to use when we’re on our evening wheelchair expeditions, but that is getting dangerous because he now envisions himself a wheelchair racer and goes screaming down hills (I can’t keep up) yelling with glee! At least this weekend we’ll be at the beach where it is flat (and safer). _
I have reinstituted running with Kiara 21/2 miles first thing each morning and again going to the “Y” every other day to aggressively confront some of my fears about this disease. Even though starting out at 7AM I can hardly put one foot in front of the other, when I finish I am elated and eager to launch another day. Somehow for me, physical activity gives me immediate feedback that “all systems are go” and that I must be doing well. Yesterday I had one of my best runs in honor of Peter Jennings who can no longer do so!
Bob and I are also back to enjoying great meals and drinking fine wines. My stomach is better than ever and I can eat anything. And as of the past month or so I can again drink wine (I’ve always been “allowed” to, but the effects of chemo on the lining of my mouth made it very unpleasant). Since this may be transient, pending any change in my treatment regimen, we decided to drink only the best wines – why not? In the past few days we’ve enjoyed the Brunello Montalcino that we bought while visiting the vineyard in Tuscany two years ago, and then a wonderful wine from the Ridge Vineyards Advanced Tasting Program (ATP) – a Mataro – that we consider very special. So dinner is again a highlight of the day!

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