CA-125 associated with Dec 22 follow up exam

CA-125 = 5 pretty much steady state with my past values of 9 - 4 and way below the cut off that divides normal from elevated.

So all results from dec 22 exam are in and are good. YEAH!!!

9 month follow up on December 22

My next 3 month follow up (which will be 9 months after finishing the investigational Avastin protocol) will be on December 22, 2011 when I have the next CT scan, Physical exam and blood tests. We forgot to draw the blood test CA-125 during my last port flush visit, which was rather harried tucked in as it was between my return from 12 days in Turkey the evening before and a 9 hour drive to Charlottesville VA for Thanksgiving that same day. So it will be drawn on Dec 22 but i won't get the results until later.

I am expecting a good exam. I have continued to work with a trainer 4 hours weekly at the gym and my physican strength and stamina have both continued to improve. I continue to have a neuropathy in my feet, but it is very mild and rarely significantly bothers me.

Between Nov 10- 22 I had a wonderful tour of Turkey - visiting some many sites that were relics of buildings dated 2-4 thousand years before Christ that by the time I arrived in Istanbul and visit the Haggia Sophia built by Justinian and his mother about 500 AD it seemed like an essentially modern site. High points included visiting ruins of Ephesus (a city of about 250,000 when Paul preached there and site of the third largest library in the ancient world), Troy, Pergamom (the capital built by Alexander the Great's general on top of a mountain and late covered in marble by the Romans), and many many other sites. In Istanbul I experienced a traditional Turkish bath in a building that was originally built in 1489 or so but had been recently renovated. I imagined that meant that they had automated the heating process and gotten rid of the slaves who previously worked below the rock slab that I lay on stoking the fires. It was rather amazing to participate in a ritual that had gone on for thousands of years, and to recognize the intact version of the architecture that I had seen fragments of in so many ancient ruins. But if you just want an excellent massage, I recommend NAtural Body or some other US spa. The highlight for me was Cappadocia - full of cave dwellings that had been occupied by ordinary people as recently as the 1960s, and 6 story refuges carved into the mountain where up to 5,000 Christians huddled for up to a month for protection against the most recent maurauders - according to my tourist information, mostly invading Persians. But the most amazing thing was the paintings on the walls of Byzantine churches carved into the caves. We were in one tiny chapel carved rather high up in a rock that was big enough for only a few people, but within which we could see remnants of byzantine crosses painted on the ceiling. It was terrific.

Then I had another wonderful Thanksgiving with extended family hosted by Jane and Bruce Greyson in Charlottesville, VA, Followed in rapid order by a detail on Dec 1 to the Emergency Operations Center at CDC (a very interesting 4 month tenure with folks I worked with before and enjoyed) and a celebration of my 59th birthday on December 7. Last good birthday before 60!!! So enjoying my youth.

So next 3 month follow up is in 10 days, but i won't post an update about it until after the new year, because I will have this examination in Gainesville GA and depart from there to go directly to Cherokee NC where I again do clinical duty through the remainder of the year, returning to Atlanta the first day of January. A slightly overscheduled last quarter of the year but ... making it through all right and glad to be busy again. I hope you all have a wonderful Christmas and a very excellent New Year.

Louisa

6 month follow up and still loving my best friend NED

Today was my second 3 month follow up since completing the investigational chemotherapy. So i got up at 6 AM and drove to Gainesville for CT scans with contrast and lab tests and physical exams.

All Great news - physical exam No Evidence of Disease (NED)

CT - NED

Labs - CA-125 = 4 (anything under 30 or so is normal, so it is totally meaningless that the values have declined from 7 to 5 to 4 the last 3 tests. Never the less, knowing it is meaningless, still I LOVE it. So in other words - LABS = NED

Other measures -

I have worked up to 4 hours a week with a trainer - 2 hours of weight training, 2 hours of pilates - and starting Sept 1 I added 2-3 hours a week of water aerobics depending on how often I can get to the classes. That is a big difference from January 2011 when I would do half an hour with a trainer and then have to take a nap before I could shower.

And while I have not yet made it back down into the PHS approved weight category, I have moved 5 pounds down which is at least movement in the right direction.

So all in all - all indicators are good. And I am very very glad. Now I am looking forward to 2 serial weekends of 40 year high school reunions - this weekend in Sylva NC and next weekend in Magnolia Arkansas - 2 good places to grow up!

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.