It is possible!!!

I am here to witness that no matter how old you are, how fat you have become, and how tired you start out -- If you make a consistent effort to eat servings that are just a bit smaller than the ones you were used to, AND to increase the proportion of your meals that come from fruit, vegetables, grains, fiber, and protein, AND to avoid eating empty calories (ie things with sugar and alcohol), AND try to drink as much ice water as possible in place of any flavored beverage, AND in addition to try to actively (if gently) exercise 4 hours a week or more AND if you keep it up long enough YOU CAN LOSE 5 POUNDS!!!

How long is long enough? Well, let's just say I am looking at life style changes, not short term benefits. AT this pace, however, if I manage to keep it up consistently enough I fully expect to be back at my preferred weight sometime prior to the close of 2020...

Since the last PHS officer requirement that I have not yet been able to achieve since returning from Chemo is getting myself back down into the acceptable weight range, this is a step in the right direction.

YEAH!!!!!!!!!!! Pat on back Pat on back Pat on back Pat on back...Whoo Whooo Whooo Whooo Whooo!

The significance of the moment

"The trick is not to count the moments, whether backwards or forward, but to experience them for what they offer in and of themselves."

The quote above is copied from the blog of a college friend who was diagnosed with advanced lung cancer about a month before my diagnosis. The context of the quote is ruminations on the significance of the 9/11 anniversary in the context of her own situation - just notified that the 4th line experimental chemotherapy that she has been taking is not working, and her only remaining option is a broad spectrum nonspecific drug that is likely to have little impact.

Gina has throughtout her disease not only show courage and grace, but been a remarkable source of support to others and of eloquent description of experience. Her sentence, shared above, captures very excellently the challange before us at every moment of our lives. It is, however, easier to adhere to it when you have something to strongly focus your mind.

Thanks, Gina, for another eloquent expression of what matters most.

My second 3 month check up occurs 12 days from now. CT scan, physical exam, and another blood test for CA-125. Fingers Crossed, all will continue to be well.

First 3 month check up and All is well

I have been on vacation from the blog for a while but it is time to catch up. After I completed the standard chemotherapy in May 2010 I thought that the clinical trial part (avastin every 3 weeks) was not affecting me, because I began a slow up hill rise with evident progress every trackable by the week. But I finished the last dose of the investigational drug the end of March this year 2011 and took a rapid step up - so I guess it was affecting me after all.

Other things come into play - in January I decided my neuropathy had receeded enough to begin twice weekly half hour gym sessions with a physical trainer. Initially we did very mild stretching mainly and I would still have to go home and nap before showering, dressing and going to work. But I rapidly got past that, moved on to increase to 1 hour sessions twice weekly and lost the naps. This has resulted in much improvement. These sesions came to an end in May when I irritated a knee taking a CPR renewal class and had to spend a couple of weeks with ice on my elevated knee and walking with a cane. But I took a week vacation in Minnesota in June, was able to walk for hours with friends and had a terrific time on a Segway tour of Minneapolis. What fun! Immediately upon return on June 20 I had my first 3 month follow up off the Avastin. Physical exam, CT scan, and blood test for CA-125 all continued to show no evidence of disease - often referred to as NED. So I was delighted. My Ca-125 blood tests continue to bounce around between 9 and 5 - anything less than 30 is normal. So I am very pleased.

Later that week I came down with a severe flu - was out of work for 2 days with fever and muscle aches, and was weary for more than a week. But that is all behind me now, and I stated back with 1 hour training sessions for 3 weeks. This week I am taking personal leave with the intent of catching up on lots of personal paperwork that I am behind on at home, and decided to step up to 4 sessions a week. We will see how it goes. I am eager to get as good as possible as fast as possible. This seems to help.

Today i went back to Gainesville for my steady appointment to have my port flushed - necessary every 3-6 weeks to keep it from clotting off. But mine seems to often clot off - so I wind up having to sit for a while and have medicine injected to remove the clots. Still, as long as I remain NED I can't complain about small inconveniences.

I have a lot of piled up personal leave that I need to take before January 1 or I will lose it. I don't intend to lose it this year - so open to suggestions about how to spend it. Right now I am organizing the house and personal paperwork, but next time off I hope to do something a little more fun!

R.I.P. Jacob P. Dawg Chapman 7/1/96 - 5/27/11

Jacob P. Dawg Chapman, aka Jake, born approximately July 1, 1996 and acquired from the Atlanta humane society a little more than a month or so later, died peacefully while sleeping in my living room sometime between 7:30 and 9:30 AM today. Intelligent, gentle, patient, beautiful when he ran, he was as good a dog as I have ever known. With apologies to my siblings' canine companions, I feel confident that, with the possible exception of Wilbur late of the Dallas branch of the family, Jake was his Grandfather's favorite Granddog - despite having, in a fit of youthful indiscretion, chewed up that Soviet military fur hat that Granddaddy had proudly brought back from Russia.

At nearly 15 years old, he was 3 human years (which I guess translates into 21 doggie years) beyond his predicted life expectancy. Diagnosed with tumors in his liver and lungs months ago, increasingly skeletal, he just kept trucking along defying all expectations for a very long time. He was clearly living on borrowed time, but he seemed indestructable until I came home and found him warm but unresponsive.

Which created a bit of a problem.

When we were kids and our family dogs died Daddy would bury them in the garden. Years later you could gaze out and recognize the particularly bright patches of green. There was Sheba, over there Missy, that especially large well fertilized patch in the far corner was Wilbur the goat.

But still at less than full strength from chemo, limping due to a knee that flared up this morning after hours of kneeling on a hard floor during a CPR course yesterday, it was pretty clear that picking him up, transporting him somewhere myself or trying to bury him in the back yard was not a feasible approach to removing an unexpected corpse from my living room.

Turns out when a dog dies in your living room in Atlanta you call a business called "Deceased Pets". For a fee approximatly 3-4 times what it cost you originally to acquire the dog from the pound they send out a man to remove the corpse from your living room and transport it to a large refrigerator (which they assure you is just like the human morge) where it will be stored over the weekend until they can accomplish an "individual cremation" sometime next week and return the ashes to you in a plastic baggie inside a pretty blue tin container. For a fee I probably could have gotten a more decorative container worthy of my mantle place. For a larger fee I could have interned Jake in their cemetary. And for a tiny additional fee I could have had a terracotta imprint of his paw made before he was cremated. For no cost at all they were willing to preserve a lock of hair for me.

I declined all but the basic removal and cremation service. I feel confident if I really need to save some Jake hair I can sweep up a bit from under the various furniture around the house.

I expected the transportation man to arrive with a large plastic bag. But instead he came in with a little blue gurney with velcro straps onto which he respectfully rolled the dog, secured him with the straps and covered him with a blanket - I suppose to ensure that he does not get cold prior to arriving at the refrigerator - uh I mean morgue. He gently tucked the blanket around Jake's lifeless chin, then checked to learn whether I would prefer that he covered his face (it is OK, I have seen dead creatures before and have been sitting in the living room with this one for nearly an hour before he arrived), and finally asked me if I would help carry the gurney out to the van. Which i did. When we arrived, inside the van I noticed a large black plastic garbage bag containing an unknown object that appeared to be about the same size as would have been a dog who might have recently occupied a little doggie pillow that was resting next to the garbage bag in the back of the van. Which left me suspicious that Jake's duration of residence strapped onto the little blue gurney and carefully covered with a blanket to ensure he did not get cold would last - well about as long as it took to get to the site of the next deceased pet pick up site.

Amused by the ritual, still I did appreciate their concern for my feelings. Or maybe just for my doggie removal fee. I suspect that the basis for an entire anthropological dissertation lies in the study of modern urban dead pet disposal rituals.

He was a good dog. And I miss him already.

We are fine after the storms - thanks for asking

I, too, spent last evening glued to the TV watching incredible storms moving closer and listening to the warnings. I even tried to call my collegue in Rome, GA when the storm looked especially threatening and the weather people augmented the warnings to immediately seek shelter they had been issuing steadily for an hour by asking the audience to call any friends and family in the direct path by cell phone and warn them to seek shelter if they had not already done so.

Unfortunately I forgot that having developed the habit of TIVOing everything I want to watch during my chemo days - I was watching the warnings close to an hour after they had been urgently issued.

So I went to bed. The worst of the storms bypassed Atlanta. Except for Balsam (the Plott Hound) inexplicably deciding to join me in my bed in the middle of the night, nothing too dangerous happened. And my collegue in Rome GA? He is fine, too. His family was watching the warnings in real time and responding appropriately.

Growing up in Arkansas I learned to respect tornado season. But I never remember anything like this. Last estimate I hear was more than 150 tornadoes in Alabama alone yesterday and more than 200 deaths counted to date. Alabama is our neighbor to the west for those of you a tad weak on geography.

But on other topics:

Finished my last Avastin (investigational drug) injection in late March. Celebrated with a weekend visit from college girlfriends from Omaha (Susan Thomas) and St Paul (Sherri Buss). Their visit gave me an incredible energy boost and we spent the weekend walking through the Botanical Gardens in full bloom, the Atlanta History Center, taking the Oakland Cemetery Civil War focused walking tour at twilight, and enjoying dining outside at various sites. Then they went back to the Midwest snow and I took a long nap.

Celebrations continued with a visit to Arkansas for cousin Nathan Walker's wedding on Palm Sunday weekend - visited with lots of Walker side relatives and my childhood friend Kathy Wilson took me to the best Palm Sunday service ever!! Drums, dancing, Hawaiian shirts, and the Pastor dancing behind the burro with a shovel and broom in his hands. A bit of a contrast with Easter Sunday pre-dawn great vigil with the bonfire, candle light, and Dean marching sedately with ceremonial candles and silver chalices in hand. Followed by a large Easter pot luck meal with friends from CDC and my Aunt Marian Sprinkle Graves here in Atlanta. 93 years old but she could beat me in a foot race. My friends thought she could not be a day over 75. Great food, great company, great celebration.

And this coming weekend I go to Nashville to see niece Louisa M Chapman perform in Carmina Burano with the Nashville Ballet. Those of you who have access to my Facebook page may have noticed postings a few days ago of Nashville Ballet members breaking into dance in a public building in Nashville. Louisa M is the one in front being lifted with the single blond braid.

That pretty much completes the month of official celebration. I am delighted to have the whole treatment thing over. I am really benefiting from the physical trainer's help, and my neuropathy is nearly gone. And I have nearly a month to catch up on some work around here before my next celebratory event, a trip to Minnesota for a week in early June (June 11-19) when I hope to see lots of friends from college and residency days.

A quote worth sharing

I found the following, written by Joan Borysenko, an MD and psychologist, on my friend Gina's blog today and wanted to share:

“You are at my side, dear friends, and God is everywhere. Yet ultimately we are alone, making our way home by the candle of the heart. The light is steady and sure but extends only far enough to see the next step. That there are steps beyond is a matter of faith. That we have the faith to endure and walk our own journey-even when we think that we are lost- is a gift of grace, and of friendship. Many times our light seems to go out. But another light, one held by a stranger or a friend, a book or a song, a blackbird or a wildflower, comes close enough so that we can see our path by its light. And in time we realize that the light we have borrowed was always also our own. ”

Last Avastin Dose and good CT scan

Last Monday, March 21, I got the last dose of Avastin of my investigational trial.

The good news: Totally completed the entire chemotherapy regimen & now that I am no longer taking Avastin, within a few weeks - a month or so at most - if I have to have surgery it will no longer be life-threatening.

The disquietening feeling: that was the last dose of stuff that makes it hard for any residual tumor cells to get a foot hold and grow. From now on, they have an open playing field.

Well, let's focus on the good stuff.

Then Tuesday, March 22 I had the first follow up CT scan. Wednesday I was called and told the CT scan looks good. And the next set of follow up appointments was made.

So from here on out it is a visit every 6 weeks or so to have my port flushed. The port is a permenent little entry inserted into the vein that can be used for drawing blood and giving infusions like medicine into the vein. They leave it in for at least another year - and I have to have it flushed periodically to keep it from clotting off. Plus they will use that opportunity to draw blood to test for the blood marker CA-125. As if starts rising again, that suggests the cancer is returning. As long as it stays down it suggests all is well.

As well as a visit every 3 months for an examination, and a CT scan every 6 months for the next 2 years. After that all visits drop to every 6 months. Time will tell, but for now all is well.

Meanwhile it is that confusing season in Georgia when you may have to switch your home system from heat to AC back to heat again several times within a week. Last night it dropped to the high 30s or maybe just the low 40s, and I put the heat back on. Predictions for this weekend suggest I may have to switch back to AC again.

The blossems are gone from the peach tree in the yard, but in full bloom on the dogwoods now. Lots of daffodils and narcissus in yards, and the azealas are budding out. The forsythias are no longer the only bright sentinels of spring around here.

On the down side, when I pick the dog's outdoor water bowls up in the morning to refill them, I first have to clear the yellow rim of pine pollen away, and NPR reported this morning those famous Georgia High Pollen Counts that should encourage people with lung disease to stay indoors or wear respiratory protection, and those will pollen allergies to keep their antihistamines close by.

Beautiful sunny days that begin before you leave for work in the morning and extend beyond the rush hour traffic coming home. It is a great time of year in the South.

Spring in Georgia

I forgot to say that it is that glorious time in Georgia that arrives every year just as spring announces itself. As I drove off to get labs tested last Thursday i noted the first bloomed out daffidil of the spring in my back yard. After returning from the swamp as I drove out to get my AVastin today I noted 5 blooming daffidils or narcissis of various types in the front yard, as well as 3 clumps of blooming crocus around the mail box. What a beautiful time of year this is!

Penultimate dose down, one more to go...

Got my last set of labs for monitoring chemotherapy last Thursday, after which I took Friday as leave and headed to south Georgia and the Okefenokee Swamp. What a great place to spend the weekend! The weather was terrific - warm with a little misting rain off and on throughout the day but nothing prohibitive.

On Friday I explored the east entrance of the park - an area characterized by swamp prairies since most of the old cypress groves were cut out years ago. I spent the morning sleeping, the after noon walking (about 2.5 hours worth) around on trails and boardwalks, including the old restored swamper homestead, and the evening taking a sunset boat tour. That was wonderful - the guide loaded us onto a motor boat and drove us up the canal and into a meadow. The water was low due to drought, and the canal was crowded with alligators all over the place. After watching the sunset over the priarie, we headed by in the dark. We were each handed flashlights to shine on the water. If you got the angle just right gator eyes lit up bright red. By this method I recognized that there were in fact far more alligotors in the swamp than I had realized on the way in. Many were hanging out with just eyes tipping over the water and during daylight I had mistaken them for cypres knees or floating debris or logs or some such.

On SAturday I drove around to the western entrance to the park where I had hoped to take another group motorboat tour. But I arrived just after the morning tour left and the next would not go out for another 3-4 hours. So instead despite having no experience whatsoever with driving a motor boat I decided to rent a boat for 2 hours and take myself out. Turns out is is not so hard to steer a motor boat if you have someone else hook up the gas and start it for you. I was a little wobbly on the steering but as long as I went slow most people could figure it out and get out of the way, and I got better as the day went on. Being alone in the boat was not so bad as there were enough people in the water that i was in sight of another boat most of the time and I kept my life jacket on all the time. Which might not have been so helpful if i feel overboard in front of a hungry gator but I tried not to think too much about that.

The western side of the swamp was cypress forest - and beautiful in a slightly different way from the eastern side. But again incredibly full of gators - way more it seemed than in the east - and that was only partly explained by my ability to recognize gators by their eyes poking over the water instead of having to see the whole thing now. There were also a lot of turtles sunning themselves, and a few birds. I only really noticed one, but it was lovely - a large blue heron that appeared to be stalking a fish or something in the water at the base of a tree right at the point where the canel emptied into the large swamp lake. Nearby was a gator that was lying as still in the water as the crane was standing at the base of the cypress, and was as intently focused on the crane as the crane was on whatever it was stalking in the water. I had a feeling I was watching a progressive chain of predators, and if I had enough time to hang around I would eventually see the crane catch and eat a fish or the gator catch and eat the crane, or maybe both.

The only problem was that I realized, out on the water, that I knew how to steer and change directions and speed up and slow down, but I was uncertain how to stop (and restart) the boat. So that was a bit limiting. I had to only drive places where I could turn around instead of having to back out, and could not risk stopping the boat altogether and getting out. Although the thick coating of gators disguised as logs along the side of the water did not frankly inspire me to want to get out and walk around. And toward the end I was driving along heading back toward the canal and dock when I noticed I was passing through an area that seemed particularly thick with gators. I was concentrating on one ahead of me and debating whether I ought to deviate toward the right to avoid it when it solved the problem by sinking down below the water out of the way. But something caused me to glance a tad to the right and I registered that the sunlight was creating an interesting pattern on the water right next to my boat - sort of looked like a long set of little ridged under the water - then I realized that what I had seen was the pattern on the back of a very large gator that was apparently just under the water directly to the right of my boat - lined up nearly side by side with it and extending, I suspect, longer than the lenght of my boat. I am not exactly sure because when I realized what I had glimpsed I was not inspried to slow down and lean over the water to see exactly how big the gator that was cuddled up along the side of my boat might be. I confess i was instead inspired to jump a bit off my seat, then settle down, speed right up and hurtle forward keeping my eyes rigidly to the front. IF the gator was curious about whether I would be a tasty meal I felt no need to find that out. shiver.

It was beautiful. I need to do it again soon. Although it may be less fun once bug season strikes. I recommend the Okefenokee Swamp to anyone who has not visited it and who has a liking for the interesting variety of things supplied by nature.

I returned to Atlanta late Saturday and spent most of Sunday just sitting around recovering from all the exercise.

Then today I drove to Gainesville GA again for my next to last dose of Avastin today as well as physical exam. In 3 more weeks I get the last dose of the investigational maintainance schedule of Avastin that I have been receiving. After that - a CT scan, followed by CT scans every 6 months for 5 years, and physical exams every 3 months for 2 years, followed by every 6 months for the next 3 years.

It feels really really good to be close to finishing. Although there is a slight voice in the back of my mind that wonders if it will be a good thing to stop getting doses of drugs intended to keep the tumor at bay. Still it will be a landmark of sorts.

What a fascinating world - what interesting creatures, what a great swamp.

Another one down, two to go....

Last Monday i received my 3rd from the last dose of Avastin. The penultimate dose will be Feb 28, and the last dose March 21. Great to be nearing the end of the protocol.

With excellent timing, a friend sent me another news release from Roche (the manufacturer) stating that Avastin combined with chemotherapy has now been shown to significantly increase disease free survival in 3 large stage III trials. Stage III are the final trials where safety and efficacy have been established and these enroll large numbers to see if the efficacy findings hold up and the safety profile remains stable. This is excellent. There was discussion in the news clipping about whether Avastin would get FDA approval for the indication of ovarian cancer, because it is expensive and while it has been demonstrated to prolong disease free survival (the duration of time before disease recurs or comes back), it has not apparently been demonstrated to clearly extend overall survival.

For me, I know what I would argue for if the FDA wanted to bring me in as a patient representative. What I am focused on is disease free survival, as I continue to wait for my chemotherapy-induced neuropathy to receed and my strength to return. I don't think in terms of time to death or wonder how long I will survive. I think in terms of time until recurrence and wonder how much time I will have before I have to return to chemotherapy again. And I hope it will be long enough to regain my strength, complete the organizational, planning and other tasks that I need to prepare, have my neuropathy go away at least enough to allow me to travel and maybe dance and scuba dive again with out excessive limitations. There were many blessings and lessons contained within the experience of chemotherapy. But I think I learned them the first time around and am less optimistic that a second round will be a time of learning and progress rather than a time of ... marking time and resting because i can do little else. The ability to be productive, to travel, to take care of business or to just go out to have fun that I measure is the time between now, when I have finally reached a physical point where I can begin to do intentional exercise (half hour at a time and very very mild, but still...) and the point where disease recurrence will push me back onto chemo. It is not the time between now and the point when I cease to breath.

So I would argue that an increase in disease free survival is more meaningful than an overall increase in survival, if FDA wanted to ask.