LouisaECChemoDiary

CA-125 associated with Dec 22 follow up exam

2012-01-06T21:46:00.002-05:00

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

2011-12-12T19:54:00.002-05:00

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

2011-09-22T22:00:00.002-04:00

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!!!

2011-09-14T20:19:00.002-04:00

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

2011-09-11T18:13:00.003-04:00

"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

2011-08-01T17:52:00.003-04:00

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

2011-05-27T23:47:00.006-04:00

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

2011-04-28T20:43:00.002-04:00

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

2011-04-04T19:34:00.001-04:00

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

2011-03-25T21:20:00.002-04:00

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

2011-02-28T19:04:00.002-05:00

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...

2011-02-28T18:36:00.002-05:00

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....

2011-02-10T17:16:00.002-05:00

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.

Counting down

2011-01-17T15:48:00.002-05:00

Dose 19 of Avastin today, along with laboratory testing (since I was snowed in last Thursday and could not get out for testing) and physical exam.

That is dose 19 of 22 - so only 3 left in the investigational trial - currently scheduled for Monday February 7, Monday February 28 (along with a doctor's exam) and Monday March 21 - And we will be done!

So I decided we were close enough to the finish line to ask about monitoring after I finish the treatment course of Avastin. It will consist of an physical exam and CT scan after then completion of the Avastin course, followed by physical exams every 3 months plus CT scans every 6 months for the first 2 years. Then followed by physical exams and CT scans every 6 months for the next 3 years. Then, assuming I have gotten that far without evidence of recurrence, the follow up required by the GOG clinical trial will be completed. I did not ask about follow up not required by the clinical trial. I will be happy to make it to these first milestones, then figure it out from there.

For the first time in more than a week the roads are clear and the snow is largely melted and gone. I say largely because large pockets of my yard (the shady areas) still have clumps of snow waiting for the weather to stay warm long enough for it all to melt. But yesterday it was warm enough to enablt me to chip away at the remaining snow and ice stuck to my front porch, pry it up in sheets and move it off the porch. All the time remembering that my Minnesota days should have taught me that you ALWAYS remove snow from walk ways immediately after it falls and before it can stick to the ground in sheets of ice. But that is because in Minnesota they know it will be sticking around for months, and here we (mistakenly this time) assume it will just melt away within hours or at most a day or two. Fooled us this week!

3 days and counting below freezing in the deep South...

2011-01-12T20:05:00.003-05:00

At the end of the third day of being snowed in, the approximately 6 inches of snow in the yard has not diminished except in the places where one of us has walked on it, or shoveled it out of the way to allow safer access to the yard for ourselves or our dogs. The dogs tread cautiously around the treacherous back yard. The crust of the snow has turned into solid ice, resulting in the younger dogs skidding and sliding around the yard like young kids on ice skates, only not enjoying it nearly as much. The ancient dog, Jake, has the same problems but with less stable footing, so that he frequently skids down on the ground or his feet slide out from under him. Occasionally the iced crust fails to hold their weight and one or more legs breaks through, which is even more difficult for the old dog, who creeps gratefully back into the house as soon as possible. The young dogs also do not care to linger in the yard.

Threatened with the requirement to make it to work or take personal leave today, my niece Dorothy managed to walk to the nearest MARTA stop (Atlanta subway) - a normally 15-20 minute walk that took more than 30 due to the slipperly road conditions - and made it in to work, only to return about 4 PM. They decided the 11 AM - 4 PM work day had been ill advised, sent the employees who made it in home and declared the business closed for tomorrow.

I have not exited the house since Sunday night except to help the dogs down the back stairs and to shovel off the back deck so they could make it into the yard on their own.

Temperatures did not rise above freezing today, and are not scheduled to do so tomorrow either or anytime before Friday afternoon at the earliest.

Never the less, CDC has announced to employees that we will open tomorrow, just at 10 AM instead of 8 AM. I guess someone got impatient with all those federal employees staying home, despite having spent the past couple of years encouraging the employees to telecommute whenever possible. All fine and good except that the dangerous conditions that closed the agency have not improved. Wishful thinking will not make it safer to try to drive to work tomorrow, and it is not possible to walk that far or take public transit since the subway does not go anywhere near most of the campuses.

I worked full time at home yesterday and today on CDC business - starting with a teleconference this morning at 9 Am and finishing about half an hour ago. So just over a 10 hour work day, and a slightly shorter one yesterday. GRanted on Monday I only did a few hours of CDC work, and having depleted my at home resources, likely would not have been able to do much for CDC tomorrow. Still out of 3 snow days I have performed work from home for approximately 2.5 full working days - not bad. I am not really thrilled about risking my car and my life trying to get into work tomorrow over very dangerous icey roads.

I will wait until 10 AM and hope that either the weather predictions are wrong or someone with authority will come to his or her senses and call off the work day. But if not I will be treading my way into work tomorrow and hoping I do not wind up in the hospital again - this time for trauma. After 8 years in Minnesota and 2 in Boston I am pretty comfortable handling my car on snowey roads. But even up there I would be attempting to stay off these roads, since unlike the upper midwest and new England, we have no road clearing equipment so if the snow does not melt it simply turns to patches of ice and the roads do not improve. And being able to handle your own car does not protect you when the guy next to you who has never driven on ice before goes into a skid.

We hear they are planning to cut the agency staffing by 10% by attrition as a money saving plan. We just did not realize they were planning to do it all tomorrow.

Am I in Minnesota?

2011-01-10T21:36:00.003-05:00

Tonight, for the first time ever in the history of my living in the South, I had to shovel snow! The (by my estimate) 7 inches of snow crusted with ice that coated the back deck and the 4-5 steps down to the yard were too much for my ancient mostly-pointer Jake to negotiate. I carried him down once - then got to work clearing the steps.

Last night I was cohosting a dinner party for a Foyers group (from church) but we tied up early because of the predicted snow. My cohost Sue insisted that I head home and leave most of the clean up to her. Sure enough, the snow began as i was loading the car (more like tiny balls of ice), was coming down steadily by the time I started out, and was accumulating steadily by the time I got home. Fortunately the roads were still clear, but by 10 pm last night the yard and neighborhood looked like a winter wonder land, and my neice and her boyfriend were out playing in the snow. This morning the CDC was closed "except for essential personnel". Fortunately for me I am not currently essential because I don't know how I would have gotten in if I needed to. The same 6-7 inches of snow that coated the deck, steps and yard also coated the driveway and street.

Since I have not ventured out I don't know if the roads are clear once you get off my street. I do know that the temperatures have not risen above freezing yet today and the block remains totally snowed in. I am searching the internet and keeping an eye on my Blackberry for another email from the CDC EOC telling us not to report to work again tomorrow. But since none has arrived yet, I am beginning to turn my mind to thinking about how I might best attempt to get into work if I am expected to report tomorrow.

I still have those Minnesota cross country skiis - but the same absence of side walks that makes it hard to walk anywhere in this city would inhibit my ability to skii to work - not to mention that physically I doubt I could make it these days.

Today was very productive - perhaps not for the taxpayers but for me, as I finished 3 loads of laundry, a couple of loads of dishwasher, a lot of accounting and filing and tax preparation at home.

Tomorrow morning I will try to get a photo of the lovely snowy land to post.

Meanwhile, how many mass killings in schools and public places do you think we will have to have before the Congress decides that if it is necessary to have a license to drive a car and to renew that license periodically and keep that car registered then it should also be necessary to have specific training and a license to have a gun and also necessary to register that (those) guns? Why does the right to bear guns make it necessary to have laws that prevent the ability to have a national database documenting gun owners? Why is it necessary, easy, even possibly for mentally ill people to easily equip themselves with automatic weapons? Am I the only one who thinks that the NRA has had too much influence on Congress, and in ways that go way beyond protecting the ability of my acquaintances who hunt to put food on the table to coninue to be able to do so?

And Another Haircut!!!

2011-01-06T22:54:00.001-05:00

Today I got my second haircut since chemo. Now the first one in october did prehaps shape the hairs a little more evenly. But to be completely honest the major incentive for a haircut at that point was simply the idea that I finally again had hair that could be cut.

Today I actually had enough hair that indeed things looked better after the haircut. AS Yang (my excellent hair stylist) said, he had a little more to work with. It was still under normal circumstances nothing really to write home about. But I really enjoyed it. Enough to also purchase the stuff that he recommends I put into my hair to be able to shape it. And to agree to another appointment on saturday when he will stripe color into it.

Never thought it would be so very much fun just to have hair...

Merry Christmas to all and to all a good night...

2010-12-28T22:28:00.002-05:00

No, I did not drop you off of my annual Christmas letter list. I just have not gotten around to sending one since 2008. But I will get one out this year, I promise. Maybe not for another month or so but...

So the dogs and I drove up to Sylva, NC on Christmas Eve where I had rented a cute little house in Dillsboro (kind of a Sylva suburb) with just enough room for me and the dogs for Christmas Eve and Christmas Day. Despite grim weather predictions, the drive up was lovely. We arrived in time to settle the dogs and make it to the First Baptist Candle and Carol service (me that is, I left the dogs in Dillsboro) and afterward to the usual open house at the home of parents of high school friends where their extended family (and my extended high school friendship circle) gather on Christmas eve. And after that to the next extended family gathering, this one a bit more compact and the children and grandchildren of another high school friend. It was all lovely. Significantly, First Baptist is between pastors at present and as a result the design of the Candles and Carols service was up to the congregation. They decided to revert back to the original design - just scriptures interspersed with carols, lite by candles, with a pleas for funds to support service to local residents in need and a choir special or two. It was lovely. And short. which we all appreciated.

the following day 3 to 12 inches of snow were predicted, and by the time I was up and stirring at 8ish there was already at least an inch on the ground. I decided to make a calculated gamble that I could load up the car and get over Cowee mountain before the snow froze and thereby get back to Atlanta on Christmas Day. The alternative seemed to be maximizing the value of my rent by staying through Christmas Day as originally planned, but risking letting the roads freeze and being unable to return to Atlanta for several days. While I greatly appreciate several high school friends who offered me a spare bedroom for my own use, or a basement for the temporary dwelling of my dogs if my stay was forced to exceed the duration of my rental reservation - the fact that my next Chemotherapy (Avastin) appointment was on Monday Dec 26 made it highly desirable to return to Atlanta on schedule.

So i packed up the car while the snow continued to fall thickly all around. By the time I had the cars loaded and added myself and the dogs and started out, there were likely an additional couple of inches of snow on the ground. And it continued to pile up as I drove out of town and headed up the mountain.

The drive was beautiful. The snow was falling so thickly that distant vision was limited. Fortunately all the way over Cowee mountain the traffic was very limited, so it was easy to keep large distances between cars. But I had no trouble - no slipping or sliding. Anyone who has traveled over Cowee mountain and admired the view from the large drop offs will recognize this as an excellent thing. My usual traveling speed of 55 - 70 MPH was reduced to something more like 20 - 35 MPH all the way through North Carolina and the first part of North Georgia. Around Tococca, Ga the snow turned to rain, and shortly thereafter the roads cleared and travel returned to normal speeds so that I arrived home in Atlanta by early afternoon.

Temperatures hovered around freezing the whole time, however, and within a couple of hours of the time the dogs and I re-established ourselves in the house in Atlanta snow began to fall here as well. By Sunday morning the roads were iced in, the yard was covered with snow and I did not bother to try to leave the house until Monday when it was time to depart for chemotherapy. Fortunately the roads had cleared and the snow and ice in the yard had diminished.

And today the snow and ice in the yard is largely diminished - almost gone in fact.

Now I know that about now those of you in Minnesota and Boston and New York and Canada and other points north are thinking "What is the big deal?" But trust me, down here in Dixieland a white Christmas is a rather rare commodity. This was the first white Christmas in the mountains in, if I remember the news correctly, several decades, maybe even 50 years. And the first white Christmas in Atlanta since sometime before the turn of the century.

It was all very very beautiful, and we (Jake, Balsam and me) enjoyed very much our low key white southern Christmas. We spend a lot of time eating tomato soup full of crumbled corn bread, drinking cinnamon flavored hot apple cider, and thinking happy thoughts. I spent a good bit of time reading the load of Christmas cards and letters and often giggling over various reports from you and your families. Thanks for keeping me informed.

The snow and ice are largely gone now, but enough remains to make the trip up and down my back stairs a bit treacherous. Fortunately I make it rarely but the dogs make that trip multiple times a day. But it is lovely. Sorry I did not catch a photo for you.

Another avastin dose down, 3.5 months to go...

2010-12-06T22:45:00.003-05:00

I had another Avastin dose today. This will continue every 3 weeks through March 21. The good news is that my blood pressure was excellent today on my current medication - with a systolic under 130. High blood pressure is a frequent and problmatic side effect of Avastin, and I have had to go on medication for it, but appear to be doing fine on my current medicine.

My hair continues to grow but (maybe I imagin it) much slower than before chemo. I am not complaining. I am so happy to have any hair at all again!

Jake, my 14.5 year old pound mutt with the tumors in his live and lungs, continues to do surprisingly well. He sleeps a lot, but then he is more than 2.5 years beyond his predicted life expectancy so... He hangs out closer to me, and seems a bit slower, and continues to slowly get skinnier - but otherwise he just keeps trooping along, sweet as ever and apparently happy. Sorry to leave you hanging for so long. I am renting a tourist house in Sylva on Christmas so I can take the dogs with me instead of boarding them, but otherwise they, and I - we are all doing well.

I am taking a lot of personal time off last month and this one. BEtween the time off work and the increased energy I am finally makeing real progress in catching up on the mail, filing, paperwork, and just plain stuff that piled up around the house over the course of my chemo. Hopefully by the new year the house will again feel more like a home than a ware house.

Otherwise no real news to report. Hope all your holidays are happy and healthy.

I am doing fine but the dogs are having problems

2010-11-03T23:09:00.002-04:00

Had my most recent doctor appt today and all looks well. I will have my next Avastin treatment on Monday. the original schedule was delayed a week because I had to give a lecture out of town last Monday.

My first 3 major professional deadlines since chemo all came in a bunch over the last 3 weeks and I managed to meet them all. Although it required working over time and some on weekends, but even that was good since it provided proof that I can do that again. But hopefully not too often.

Now for the bad news. The dogs went in for their vaccine updates and, for Jake, his senior dog exam which usually consists just of lab tests. This time his liver enzymes came back very abnormal so he went further for ultrasound examination of his liver and lungs. Bottom line - multiple tumors in his liver and at least one large one in his lung. Not good. He is also getting skinnier every week and looking very boney now.

I decided against surgery or chemo. It would not be curable. He is already nearly 2 and a half years beyond his predicted life expectancy. I can't see putting him through any of that. So we are all making an extra effort to make Jake's life as good as possible for the remaining time, which based on the rate at which he is losing weight will not exceed the winter. Sad but inevitable. He is a very sweet dog. And he has had a very good life for a pound dog.

Update - avastin, progress and HAIR

2010-10-12T19:42:00.002-04:00

Yesterday I had my most recent Avastin treatment. Things went smoothly and the next one will be 4 weeks from now instead of 3 weeks. I had to delay it a week because of a professional committment. Which tells you I am back at work full time and slowly increasing the work load and once again meeting deadlines and honoring committments.

Really, it is reminding me that the ZEN days of chemo when I had to let go of everything and just live in the moment, watching America's Next Top Model and Project Runway and not worrying about anything beyond whether I should invest in some 4 inch heels after I finished chemo were... well they had some aspects to recommend them.

Living in the moment is not that bad.

BIG NEWS - this coming Saturday Oct 16 I have my first appointment for a hair cut since my head was shaved last December. Not that there is really much to cut or that I really want it shorter, but at least it will be intentionally shaped a bit. And mostly, I just like the idea that I have enough hair again to think about cutting it! YEAH for small victories.

Sorry for being so slow to update

2010-09-21T20:36:00.002-04:00

In response to a couple of complaints that I have not updated my blog, i apologize. I am slowly progressing week by week, but since that means I am now working a full 40 hour concentration week at work, I still tend to have limited energy on the weekend and spend a lot of time zoneing out to ensure adequate energy to make it fully through the work week.

I continue to do well. I still get Avastin every 3 weeks - last time yesterday - and will continue to do so through early 2011. And I get physical exams every 6 weeks - next one tomorrow - as well as laboratory testing every 6 weeks - next time in about 3 weeks. And periodic CT scans.

The results of every thing continue to be good - the labs are all normal, the CA-125 (a marker for ovarian cancer that was over 250 before my surgery) continues to be below the normal range. The CT and exams have been without any evidence of disease.

In other words, all things are good.

The recovery continues to be better week by week, but still slower than I would like. I am really working full time now - 40 hours a week of strong concentration - but have to titrate my efforts during off hours to be able to sustain that. My hair is back - not long enough for any intentional shaping, and a rather dull color halfway between grey and dishwater brown. But who can complain?

It has been a busy couple of weeks, with my Aunt Marian in and out of the hospital and needing more assistance from me, a niece moving in and another visiting for a weekend. But that has all been good and it is nice to learn that I can now gear up to extra stress when necessary.

Nothing too exciting to add - but in this world that is pretty good. Hope you all are well. Thanks again for your support.

New CT, Avastin next Monday

2010-08-28T13:36:00.002-04:00

I had my most recent CT last Thursday - still no evidence of disease. And I have my next dose of Avastin on Monday.

This whole recovery process is slower than I had anticipated. I am better every week, but still running out of concentrating ability by Friday and having to carefully titrate my physical and mental energy investments. This is normal, I am told / was warned by my doc and chemo nurse and other women who have been through the same process. As long as I am having good outcomes I try not to complain.

Hard to believe that September is just around the corner. Where did the summer go? Since I don't tolerate heat very well these days, for once I am not sorry to see the summer go.

No evidence of residual disease & genetic testing results

2010-08-14T21:51:00.002-04:00

My sister asked when I will know if I am in remission, and several of you have asked for updates.

At the moment, just over 9 months after surgery and more than 3 months after finishing the standard chemotherapy, I have no evidence of residual disease by physical exam, CT scan, or blood test (CA-125, which is not reliable for everyone but was elevated in me prior to surgery, less so but still high after surgery and before chemo, and has been in the normal and very low range very since). That is good news. That is, in fact, as good as it can get at this point.

I am still taking my investigational drug, Avastin, every 3 weeks through next February or so. I have developed high blood pressure as a result of the Avastin - a common and some times dangerous complication. But so far my blood pressure is adequately controlled with my medication, so I can continue the Avastin hopefully through the end of the intended course.

I had my most recent physical exam last Thursday (occur every 6 weeks), and will have the next set of lab tests (also occur every 6 weeks) and the next CT scan before this month is out. So all is good.

My energy, stamina and mental concentration continue to improve weekly, but are still not back to normal yet. The neuropathy (nerve damage from the chemotherapy that resulted in numbness, tingling and weakness in my feet and legs) has improved tremendously but still is not back to normal. It has improved enough for me to realize that I have a corn on one foot and probably a Morton's neuroma (a painful nerve condition) on the other that were not bothering me as long as my feet were numb - so recovery is a mixed blessing! I am not getting back to normal as fast as I would like, and it is harder and harder to tell, when I nap on a weekend day, whether that is evidence of wisely "listening to my body" or evidence of just being lazy. Good to be at a point where I have to worry about the difference again...

How long can I expect to continue to have no evidence of disease? Impossible to tell. And believe me, I have tried to find medical literature that will predict it for all sorts of reasons. Most recently my air conditioning went out this weekend and I have to decide between a short term investment of replacing an engine and condensor or a long term investment of replacing the whole system.

One study predicts an average of 10.4 months before recurrence among stage III and IV patients who got standard chemo, extended nearly a year longer by Avastin (I am stage III, but Stage III C, so close to stage IV). Another predicts an additional 2 years on average of disease free survival added by the investigational dosing I got on this investigational trial. Overall the statistics say 20-40% 5 year survival and about 10% 10 year. And if you get 10 years out without evidence of recurrent disease, I am not sure what that means with ovarian cancer, but I think you can think in terms of possibly a cure. Who knows. I have good reason to be optimistic that my experience may be predicted by the more optimistic statistics, but no way to know for sure.

I think I am going to replace the whole AC system and assume I am investing for the long run.

Since there have been at least 2 instances of ovarian cancer and another 2 of breast cancer among our extended family and I know some of you have been worrying about what it means for your own risk or that of your daughters, I decided to get tested for the BRCA1 and BRCA2 genes (the genes recognized to be associated with hereditary risk for ovarian and breast cancer). The good news is that my tests were entirely normal with no mutation detected. Does that absolutely garantee that there is no increased genetic risk for breast or ovarian cancer in our family? Well, no. There is always a possibility that there is a rare genetic risk not recognized by these tests (and not yet identified by science). But it makes it unlikely.

And it is also possible that others of you may have one of these mutations, even though I do not. If you really want to know your own risk, then you (or your mother) needs to be tested. But this suggests to me that there is likely no clear genetic risk that came through the Walker side of the family, which is the side shared by 3 of the 4 cases mentioned above. So my disease does not likely have ominous implications for anyone else.

On another note, last week 3 women asked me who cut my hair. It made me laugh. But grateful that I again have enough hair for people to actually mistake my style as a fashion choice, I optimistically dropped by my stylist to inquire how much longer it needs to get before he can do some intentional shaping. He told me to come back in another month or so...

I think I am going to keep it short. It feels great in this really hot weather and is awfully easy to manage.

I keep hearing I need to post an update

2010-08-03T20:45:00.002-04:00

So here it is. My blood pressure seems to be doing well - dialystolics (lower number) usually below 90 which is good and systolics (high number) staying in reasonable ranges as long as I remember to take my medicine.

the medicine itself sometimes has the side effect of making people feel really tired and sometimes even inducing clinical depression. I don't recognize an impact, but it would be hard to tell since I am tired all the time these days anyway but anything feels better than I did.

Strength and endurance continues to improve by the week. I am not doing a detail (have been loaned to another office for a temporary project) that has me working and concentrating all day. I can tell I am more tired at the end of the day, but I am managing close to normal productivity although I still try to keep my day to 8 hours and no longer. So that is all good.

Some days I feel almost normal. And other days I feel like this is the hardest part, with certainty about the future lending a sense of urgency to the desire to recover fully and complete every thing that matters as efficiently as possible. When it all gets overwhelming I retreat to the recliner and nap. Things are usually better when I wake up.

And the neuropathy continues to retreat. Some days i am hardly aware of it until I pay attention to the fact that I continue to walk more like Frankenstein than a ballerina. Still balance is less of a problem and the feet are feeling closer to normal. All is good.

Louisa

New Wrinkle

2010-07-17T17:30:00.002-04:00

Thursday I had my 6 week stop for laboratory testing. Elizabeth, my excellent chemo nurse, noted that my Blood pressure was running high and asked if that had been a problem before. I had taken my BP regularly at the beginning of my chemo but had neglected to do so in recent months.

I was feeling pretty lousy Thursday and returned home to nap in the recliner and watch TV. So I was pretty relaxed when I decided maybe I should haul out my BP kit and take my BP again. Wow - never knew it could be that high. Repeated it several times thinking maybe I was doing something wrong, but it just kept being high and sometimes getting higher, including the next morning when I took it before getting out of bed, and again before departing for work.

So to make a long story short - yesterday I got to start medicine for hypertension. This is not so unusual I think - as this is a known complication of the Avastin. I am relieved that I get to take medication for the BP and keep taking the Avastin.

And I feel much better today. Interesting, as I always tell patients that high blood pressure does not make you feel bad, but it raises your risk of stroke and heart attack so it is important to treat it. But now I am wondering if my feeling lously all over, then better after starting the meds means that, at least some times, hypertension DOES make you feel bad as well as raising your risk of stroke and heart attacks.

You learn a lot by being a patient. Maybe I should take my BP again and see if feeling better corresponds to a lower BP...

Always something new and exciting.

Update July 10,2010

2010-07-10T11:05:00.002-04:00

Just returned from 9 days in Cherokee NC practicing medicine at the Cherokee Indian Hospital Urgent Care Clinic. Can't say I was really able to pull my weight, but at least I pretended to. For example, one day in clinic I saw 5 patients - the other doc saw 15 in the same time period. But the Cherokee folks were very supportive as usual, I enjoyed the switch and it gave me a good opportunity to compare my current progress against a real benchmark. In Atlanta and at CDC after spending the last 2 month of chemo in a recliner chair just about anything I do feels like progress. In Cherokee the bench mark was what did I usually do when there.

First - I could not pick up my "clinical bag", a large canvas sack that stores all the things I need (or may need) when practicing clinical medicine but do not (or rarely) need at CDC. When I finish a clinical stint I wash my white coat and repack the bag so it will be ready for the next time. It is usually packed with things I use often (like little paperback references) or continually (like my stethoscope) but also with things I use rarely or only theoretically need (like a large book on trauma medicine). IT is always too heavy, and I also think I should lighten it up. But this time I had to remove the things I knew I would not be using this time around before I could pick it up.

Second - I found the hike up from the lower parking lot - which always leaves me thinking I need to work out more - was totally exhausting. I managed it but had to stop and rest several times. After the first couple of days I parked in the closer patient parking or permenent staff parking areas and avoided the hike.

Third - just sitting on a stool without a back is more energy demanding than sitting in a chair with a back. I never really noticed this before, but i was very aware of it this time.

Fourth - On Monday it was a holiday so the clinic was closed and I was an add on in the ED. I bowed out and went home after only about a 6 hour day feeling really exhausted. And despite my plans to capture some of the folks who were very supportive to me during chemo and take them to lunch after church on Sunday, without an alarm I failed to wake up until 11:45. So no church, no capturing, no treating folks to lunch or even seeing them. Well - next time.

Fifth - in addition to the physical stamina limits, It was very clear to me that as I get more tired, my ability to think clearly and precisely and efficiently also declined.

Still all in all it went relatively well. I was delighted to be back in Cherokee and Sylva for a short while. I really enjoyed being in the mountains. And it was good to have a more solid comparison to assess where I stand in terms of come back. And the increased physical demands left me thinking it is probably time to begin intentional exercise again - although likely limited to the end of the week so I don't wear out when I still need to make it to work the next morning.

Update - June 29

2010-06-29T23:12:00.003-04:00

Since my last update I have received my Avastin (yesterday Monday June 28) and had a follow up exam with my physician (a couple of weeks ago). the exam is still good with no evidence of recurrence, and the lab test CA-125 remains in the low normal range. All good.

When I went for Avastin yesterday my nurse had trouble getting blood return through my port. (the "port" is the thing that was inserted into a vein to give constant access to my blood and veins. "Blood return" means when the nurse injected a syringe of liquid into the vein through the port, but then pulled back to create a vaccume blood came into the syringe. Or in this case, blood did NOT come into the port). This means that little blood clots have developed on the inside of the port blocking blood access. This has happened only once before - when I went to the place in Atlanta for one of my blood transfusions.

In this case the problem is probably that blood is so infrequently collected through this port and medicine so infrequently injected. I only receive the Avastin every 3 weeks now, and I only have blood work done every 6 weeks.

the nurse was able to fix the problem by injecting an enzyme that digests the blood clots - but she had to do it twice. And wait 45 min - 1 hour after each injection to see the result. Since my medicine was not available when I arrived and we had to wait for that, only to learn that the port was not working, and then had to inject the streptokinase (the enqzyme that eats blood clots) twice and wait an hour after each injection, I was at the doctor's pretty much all day. Good thing I took work along. And good thing my colleague did not take me up on my offer to come into work that afternoon after I finished my chemo (anticiapted to be by noon, but not completed till nearly 4 pm).

Other news:

(1) My hair is coming back!!! I am so happy to have hair at all that I don't care if it is very short and sort of sparce and I still look like a marine at boot camp (a very old, very fat, very out of shape marine...)

(2) last week I took Thursday off and drove to Jackson, Mississippi to see neice Louisa M Chapman and her regional ballet troupe perform in the international ballet competition. It was well worth the trip, even if we could not find a very exciting place to have dinner after ward. I gather that Jackson, MS residents do not fancy night life outside of their living rooms.

(3) Tomorrow night I go to Cherokee NC to practice clinical medicine again in the Cherokee Indian Hospital clinic July 1 - 9. I think I am up to it, but I am a bit nervous about the ability to manage a day that is more physically stressful (have to stand and walk all day) and that requires constant attention and decision making. for obvious reasons, I am skipping the ED this year. dEfinitely not up to that yet.

(4) Main continuing problem is the neuropathy that developed from one of my chemotherapy agents. It has definitly improved since I finished the standard chemo. However, I still have trouble with my feet, am clumsy walking and occasionally have balance problems. I just have to hope it continues to improve. On the good news side, I no longer have to ask the vet to apply flea stuff to my dogs becasue i can again manage to open the containers myself. For a while there I could not. I stil have clumsy hands occasionally, but I think it is mainly normal clumsy rather than neuropathy clumsy. I am inclined, however, to attribute all my typos to neuropathy, rather than attribute them to sloppiness or my historic problems with spelling anything correctly.

Louisa

Labs last Thursday, Avastin today

2010-06-07T20:01:00.002-04:00

In the past couple of weeks I graduated to only getting labs tested every 6 weeks - which means my blood cell counts have come back to more or less normal after the standard chemo and remained stable for several weeks. That is good news.

My most recent lab tests were last Thursday, followed by Avastin today. Currently my energy seems to take me pretty well through 3-4 days a week, then I get worn out and take it very slowly for a couple of days and recover. This week I am stepping up to working 4 (rather than 3) days a week. We will see how it goes...

My hair has returned to a sort of peach fuzz state all over my head. I suppose if you have not seem me at the end of my chemo with essentially no hair it does not look like progress. But believe me, it is progress. These days I mostly go hatless except when I need protection from the sun, which is any time I am out.

Results of the clinical trial that tested women who got standard chemo against women who got standard chemo plus Avastin during and for 10 months after standard chemo have been released and document a "progression-free survival" (time you live with no evidence of the cancer coming back or growing larger) advantage of about 4 months for women who got Avastin over those who did not.

Since I am getting Avastin, this is good news for me.Combined with the Japanese trial that suggests that dose dense TAxol (the kind of standard chemo I got where I received carboplatin every 21 days but got Taxol every week) gives on average about a 2 year progression=free survival advantage over the standard method of dosing (carboplatin and taxol both only once every 21 days) and i am feeling that it was a very good thing for me to have entered this trial.

The remaining question, which the trial I am in is designed to answer, is whether there is a survival advantage to getting standard chemo directly into the belly (intraperitoneal or IP) rather than into a vein (Intravenous or IV). Guess we will have to wait for the outcome of this trial to learn that answer. STudies to date suggest that there may be some advantage to IP treatment over standard IV chemo, but that is the chemo where both drugs are given only once every 21 days. No way to know what would happen with the Dense dosing of Taxol which I received.

Meanwhile, I increased my work days from 3 per week to a planned 4 per week starting this week. I have no plans to "overdo it" as many have expressed concern that I might. But at the same time, I see no advantage in prolonging an convalesence any longer than necessary. Sitting watching TV is loosing its charm - but I need to build back a bit more strength and endurance before i am ready to venture out on vacation trips or other outings. So pushing myself a little bitter further physically and mentally every week seems the best way to maximize the efficiency with which I get from where I am to where I want to be.

Thanks for your support.

First professional travel, peach fuzz extending its territory on my head

2010-05-24T23:11:00.002-04:00

Last week I did my first professional travel since Chemo - 2 days in Washington DC attending a meeting (wed) and chairing a meeting (thurs). I am pleased to report that all went well. My energy and concentration were adequate for both tasks, although on Wed I did take an hour long nap between the meeting and dinner, and on Thurs after the meeting ended an hour earlier than scheduled, by the time it had been scheduled to end I was in my hotel room in my PJs sacked out on the bed watching TV. I did not leave that room again until I checked out the next morning - even ordered room service in for dinner.

But it went well, and I was able to visit with several friends in the DC area before returning to Atlanta Sunday night.

Other evidence of progress:
(1) my blood cell counts have been high and stable enough that I was able to skip my lab test the previous week. Hopefully soon the weekly testing will no longer be necessary.
(2) my head is mostly covered by peach fuzz - all areas except the very top. Clear evidence that however slowly my hair is starting to return. YEAH!

My 3rd dose of Avastin, the investigational drug that I get every 3 weeks for nearly a year after finishing the standard chemotherapy on April 12, will be 2 weeks from today. In the absence of really major events, I probably will not update this blog more frequently than at the time of each dose of Avastin. In other words, every 3 weeks starting 2 weeks from today.

Again thank you for your support.

energy up, fuzz returning

2010-05-15T22:14:00.004-04:00

This is the first week I have not had to return on Thursday for laboratory testing. My counts had been stable enough for the previous 2 weeks that they decided to skip a week. But as a result I do have to go in for lab testing Monday.

This weekend high school friend Ginny Walker Middleton picked me up and we drove to Nashville to watch other high school friend Elaine Brooks Harwood be awarded her DNP (Doctor of Nursing Practice) degree along with the rest of the very first class of DNP graduates at Vanderbilt. Very exciting and also another experiment for me to learn how I held up. Surprisingly well - which is good because next week I have my first business travel since surgery to DC for 2 days, afterwhich I will stay with friends over the weekend. Hopefully my energy will hold up.

I am encouraged enough that likely I will try to go back to work full time (5 instead of 3 days a week) starting June 1.

Although I confess that when Ginny dropped me back at my house today I immediately plopped into the recliner and began to doze. But I notice that the shows I had begun watching full time when I was on full time leave and finishing chemo are beginning to bore me now. Probably not unrelated to the fact that my brain suddenly began to seem much clearer about a week ago. It does not require quite as much effort to concentrate these days.

And lastly, while you have to look very carefully to notice it, I believe a tiny fuzz of hair is beginning to return around the lower rim of my skull. Not much to write home about - but a beginning hopefully to soon be followed by larger hairier things.

Blood counts stabilizing, energy up

2010-05-06T19:14:00.002-04:00

Just a brief update. Thursdays are the day I am on medical leave to have labs tested until my blood counts stabelize. Until today I have gone to Gainesville, come home, collapsed in the recliner and sat in front of the TV for the rest of Thursday and Friday, and pretty much dragged through the weekend.

Today I had energy to spare after my labs were collected. Elizabeth, my chemo nurse, printed out my labs since I finished standard chemo and sure enough the hemoglobin (red blood cell count) had gone down, although not quite far enough to require a transfusion, but then come back up again. Last Thursday it was 10.4 - which is not normal but is about the highest my hemoglobins would get immediately after a transfusion. And my white cell count (the ones that fight infection) also had gone down but last week were about 4,000. 5,000 is the bottom limit of normal. So that was all good and is reflected in my energy and endurance levels.

Since I will continue to get the investigational drug Avastin the first Monday of each 3 week cycle for about another year, this coming Monday I will have to take medical leave to recieve Avastin. I will have blood labs drawn then as well. But if the blood counts are as good today and next Monday as they were last Thursday, possibly I will no longer be required to take every Thursday off for laboratory testing! That would be terrrific.

Whether I will still need to take Thursdays and Fridays off just because of general energy levels remains to be seen. But based on improvement to date, I am hoping to be back at work 5 days a week by the beginning of June. This week is the first week that I have come home from labs and actually been able to do chores at home, making it seem likely that within a couple of weeks I will be able to work full time. At least I hope so.

Again, thanks for your support.

2010-05-02T20:24:00.003-04:00

Sorry I have been so slow to update this blog. The last cycle of chemo therapy (last 3 weeks) actually took a bigger toll than I anticipated - probably disproportionate to the previous ones. Additionally, my expectations for recovery after finishing the standard chemo exceeded the reality of the pace of improvement. The combination resulted in me probably overdoing it and wearing out before i got around to updating the blog. But several people have contacted me a bit concerned about the absence of information, so tonight I am determined to get an update on board. Plus I am so far behind I can't really let it go much longer and expect to ever catch up.

As I said above, after the one week deferral of chemo due to low platelet counts, I started the last 3 week long cycle. The impact was stronger than I anticipated, possibly in part because I had begun to feel so much better during the week free of chemo. Whatever - it was really exhuasting and I found my energy much lower than before. At the same time, the anticipation of an end to the standard chemo ironically made it harder to tolerate. On the one hand, having done very well spending much of several months in isolation (with the exception of the dogs who are not so good at conversation) I suddenly found myself very impatient with sitting home alone and very eager for company. On the other hand, having gotten immensely good at living strictily in the moment, with the end of chemo in sight I suddenly was again focusing on the future - what I needed to catch up on at home and at work, the need to seek a more permenent position within CDC, whatever chores and responsibilties that had been deferred for the many months of chemo and now seemed imminent. The combination was really quite distressing - made somewhat easier that I had been warned to expect this.

Fortunately for me my sister in law Dore (Davis's wife) came from Dallas to visit for the last weekend of chemo. In addition to driving me for the last dose of standard chemo on Monday before returning to Dallas on Tuesday, on Sat and Sunday she helped me problem solve on several issue, most urgent the weeds growing rapidly and high in my front yard. This may seem trivial but it was causing me much distress, partly because the stage of rapid growth the prior year had corresponded to the period when I was working 80 + hour weeks on flu response and my usual yard guy was out of town or otherwise not responding to my phone messages. As a result my neglect of the yard led to some unindentified person in my neighborhood leaving a snippy anonymous message in my mail box telling me how much my neighbors would appreciate it if I would just mow my yard. I was aware that my neighbors were unlikely to be any happier if I failed to address the weed issues this year again.

But Dore was terrific. First she suggested a weed wacker since I no longer have a functioning lawn mower. We bought the week wacker, which was a good idea for the future. And we have it partially assembled. The last few steps need stronger hands so I am waiting for an opportunity to exploit a male relative, friend or neighbor.

But meanwhile after we had the weed wacker partially assembled Dore went out and decided that the weeds were easily coming up by the roots and that was better approach. So she spent most of Sunday and Monday afternoons actually weeding the whole patch by hand. She did a terrific job but I felt kind of bad about it because it seemed above and beyond the call of duty. But it was terrific and when we got the weeds mostly out (for “we” read “she”) she tells me the St Augustine is coming back, but could benefit from having some of the heavy thatch removed. She seems to know a lot more about this than I do.

Dore insisted that she was actually enjoying the weeding, talking to neighbors who went by and listening to the birds. Possibly it was true the first afternoon, but I think she was just being nice the second one. Either way I am feeling a bit guilty, but extremely grateful.

Either way, the lawn improved, I now have a tool (needing only a couple of things tightened by stronger hands than mine) for when future such problems arise. And I finished my last standard chemo treatment that Monday April 12, an event Dore and I celebrated by chowing down on take out Lebanese food and a gigantic chocolate cup cake.

On Tuesday April 13 she went home. The dogs wandered restlessly sniffing at things and occasionally barking at me for no particular reason. They insisted on going out and back in multiple times the night after she left, and wandered over to sniff at the futon couch that served as her bed en route inside and outside. Occasionally for no particular reason that I could identify Balsam (the hound) would howl at me balefully. I think they were looking for Dore. Explaining that she had to go home because her husband and personal dogs were needing her does not seem to satisfy them. Fortunately with time they adjusted.

Meanwhile, the Friday after Dore left (and after my last standard chemo dose) I was again called and ordered to report for type and cross (blood work necessary to arrange a transfusion) followed by another blood transfusion on Saturday. I had hoped I had already had my last transfusion, but did feel a bit less guilty about letting Dore do all the yard work while I napped once I knew my hemoglobin was again below 8.

The following MOnday I got the first dose of the investigational drug Avastin alone (which I will take every 3 weeks for nearly another year) and started back to work in the afternoon. Despite my intention to work full time, I discovered that if I got in before 10 AM, worked a 7-8 hour day, all I could manage after that was to nap in my recliner until bed time, then transfer sleeping locations. Thursday I was on medical leave to get labs, and Friday I made it in about noon and back home about 4. A bit discouraging since the combination of being off chemo and knowing I had been freshly transfused (a situation that normally leads to a large increase in energy and endurace) indicated I was at a peak of energy...

Based on that experience, for now we have set up a schedule where I work 3 days a week (Mon - Wed) and am on medical leave Thursday and Fridays. For now that is working. The second week I managed to stay awake between the time I returned home and went to bed, which I consider a victory. This week (the one that starts tomorrow) I intend to try to walk a little bit in the evenings. That may be deferred a bit because in addition to fatigue the neuropathy increased during the last cycle. That results in numbness and tingling in my hands and feet, but also affects balance and other things. Time will tell. So in summary the recovery will obviously be slower than I would like, but I am seeing steady if small progress week by week,

Last Sunday I have a visit from cousins Ed and Clara Chapman from CT. They stopped by en route back to CT from visiting thier daughter and son in law in western NC, and stayed long enough to take me out for Dim Sum and help put away my Christmas decorations. Amazing how much more roomy the house looks when I remove these and the massive display of all greeting cards I had received over the coursse of chemo (Thanksgiving, Birthday, Christemas, New YEars, Easter and Get Well cards had grown to quite a large population).

And last week Bruce (the yard guy) returned to town and mowed my yard - picking up where Dore left off.

So for now things are good. the Avastin is not supposed to affect energy, bone marrow, or hair growth, leading me to optimistically anticipate hair beginning to grow back the week after I took my last chemo and planning to return to swimming at the gym a week or 2 later. But I am adjusting to a more realistic view (my hair probably won't begin to grow back for another month or so and I can expect to be recuperating physically all the way through next December). I expect to continue going on Thursdays for lab studies until my blood counts return to normal, which probably will take at least a month after the last standard chemo (through late May). Elizabeth (my chemo nurse) tells me that she has instructed the office to check with her before calling me in for any more transfusions. She wants to let my counts drop to lower levels if necessary to give the bone marrow to begin its own transfusion. I am hoping the counts don't get that low again, since I know from experience that low red blood cells have a marked impact on my ability to get anything done, other than napping.

Now that Standard chemo is finished and, unexpectedly but not surprisingly if I had thought about it, I am using up all my energy trying to return as fast as possible to normal activity levels, I will probably update this blog less frequently. I will try to update at least every 3 week cycle of avastin for the time being. I will also update if there are any major changes in status. So you don't have to worry that something has gone wrong if I do not update. If anything goes wrong I will be sure to update.

No news will be good news. In the absence of update - assume all is well.
And thanks again to all of you for your support over this long ordeal. It was not as bad as anticipated, but it was not all that rosy either and your support, in whatever form it was provided, was immensely appreciated.

LAST STANDARD CHEMO FINISHED!!!!

2010-04-14T10:39:00.002-04:00

Thanks to the assistance of my wonderful sister in law Dore, I received my last standard chemo this past Monday. Tomorrow I return for my major end of standard therapy check up (blood tests, CT scan, Doctor exam), Monday I continue the experimental part of the treatment (avastin every 3 weeks for about another year), and Tuesday i start back to work. Knock on wood I will have the endurance and not have to back off for more leave.

My apologies to folks I worried by not posting this Monday night. Between the last chemo, visiting with Dore, and napping while Dore worked like a dog I sort of ran out of time.

More details latter I promise.

SEcond of 3 treatments in the last cycle DOWN!

2010-04-05T14:34:00.002-04:00

This morning I received Taxol, the second chemotherapy dose in my last cycle of 3 weeks of treatment. So far, all went well. My blood counts are really staying up - the tests last Thursday showed a hemoglobin staying up at close to 10.4, good platelets over 130,000 (100,000 are needed before they will give me treatment) and white cell counts in the 2,0000+ range.

So far, so good. That week vacation from chemo seems to have done me a great deal of good as far as the strength of my cell counts. It was also good and encouraging to have the week off chemo and recognize how much better I felt, how much my mental concentration and physical stamina improved.

However, back on the chemo both have done right down hill to a remarkable extent. My week vacation from poison raised my ambitions but the return to chemo has dashed my ability to do anything to enact them. So I am more aware than ever of what needs to be done but inable to do much of it. Oh well, just this week and one more left before I come off standard chemo and hopefully start improving.

Other issues: My lawn has started growing and the front is totally covered with fast growing weeds. If I am not able to do something to them soon I fear they will totally take over. Hastings (A local garden place) tells me I can buy a weed killer, hook it up to the garden hose, and spray the area and it should get rid of all weeds without bothering the grass. Sounds great. Also sounds like more than I can manage at the moment. However, my sister in law Dore is arriving from Dallas Saturday afternoon with the primary intent of driving me to my last chemo on Monday. But last night on the phone she offered to help with other things, and had spent the day gardening. Maybe I can convince her to spray the front lawn for weeds. It is a departure from her approach to gardening - she and my brother Davis are very organic - but she may be willing to compromise to help me out. JUst hope all the seed pods do not develop and bloom out before she arrives Saturday afternoon. 4.5 more days to go - we may make it!

My doc started me on neurotin, a medicine used to treat siezures, to try to slow the progression of the neuropathy and then speed its withdrawal after the chemo is over. The neurotin seems almost worse than the neuropathy. Not really, but it does make me drowsy and unsafe to drive - but it also seems to diminish the neuropathy. The neuropathy really improved during that one week off chemo - a hopeful sign that things will improve once i finish chemo (does not always happen, but usually does). However, it has rapidly gotten worse again on chemo. Also the "chemo brain" has worsened - I feel generally off balance, weak, tired and unable to get anything done. Fortunately there are only 2 weeks left. If the neurotin will improve / prevent worsening of this then it is work working with I just have to be sure I finish all my tasks that require me to drive in the morning before I take the morning dose of neurotin on any day I will need to use the car.

A friend from work and church invited me over on Easter morning to have leftover ham and potates gratin, plus lovely desserts. She had cooked a beautiful meal for visiting family the night before. They took off headed home early Easter morning, Sue went to services and then fed me afterward. It was a lovely opportunity to get out (no crowd, I could emerge) a delicious meal as always at Sue's, and a good opportunity to get out of the house confinement. but I was surprised how much energy it consumed to dress nicely and put on makeup - something i have not really done since I quit going to work. MAde it clear that my energy level was lower than I realized. And the visit was delightful, I returned home and then slept all afternoon in the recliner. I mean slept. Could hear myslef snoring but was too tired to bother to get up and readjust.

Well, you can never have too much naptime. May suggest that returning to work full time the week after chemo may not be totally realiztic, but you can only try. If i can't manage it, I can always cut back again.

Happy Easter everyone - 5 cycles and 2/3 treatments in the 6th cycle down, 1 standard treatment to go. Perfect timing to coincide with the major religious celebration of rejuvenation and rebirth.

next day part 2

2010-03-30T16:43:00.001-04:00

i failed to explain that I did not start my new medicine today because the instructions say to start it at night because it likely makes you drowsy. Too bad I did not think about that last night. Looks like tomorrow may be another late start day.

New medicine starting tonight. Check in in a couple of days to see (2) how the labs on Thursday go and (2) if I am still awake enough to add to the blog after I start the Gabapentin.

next day

2010-03-30T16:15:00.002-04:00

I let the dogs out and went back to bed. I woke up at approximately noon ish when someone called me. Apparent;y that post-chemo famous steriod boost does not work as powerfully as it used to on by the 6th cycle. Although I did take a sleeping pill last night. But at about 10 pm and it only lasts for about 8 hours. And in the past often was not very effectively at all.

Oh well, sub total of accomplishments today:
1. made further progress on the necessary arrangements to be made to close out my original checking account and operate contiually out of the new and hopefully more secure one
2. becaue it was such a beautiful day (63-66 and sunny) and because my white blood cell counts had been the highest they have been in months yesterday due to the week vacation from chemo (4,500 - almost low normal) I decided to take advantace of the beautiful day to get out and run some necessary errands before my energy faded
3. dropped off and picked up dry cleaning, out breakfast/lunch out at panera bread, did grocery shopping for essentials (OK mostly for cravings like crystal light drinks and coconut cake for Easter, but also fresh fruit and other good healthy things), and tracked down and identied the driving route and time to the local place in Atlanta where I go for chemo next Monday on account of my usual chemo nurse being on vacation.
By the time i got home and feed the dogs it was after 4 and I was pooped.
4. so it looks like probably no more paperwork accomplished today. Unless i whip through my medical bills while watching TV from the recliner chair.

Still over all pleased to be starting my 6h and last round of standard chemo. a few small wrinkles.

I did not start my new medication - Gabapentin also known as neurotin. Despite my eager description of how the week without chemo had really improved it and although I occasionally had trouble opening things the frequency with which I was aware of it beyond my hands and feet (legs, back face) had really receded and practically disappeared. they were not impresssed and thought I should start this drug, normally given for seizures, which is supposed to slow the progression of neuropathy and then after I finish the standard chemo to increase how rapidly it receeds. Apparently it can take years to receed.

Also, this morning I looked down and noticed petecia around my ankles. these are little red spots that often form when platelets are low. If you are a fan of CSI or NCIS or other detective shows, these are the little red spots that medical examiners point out to the detectives as evidence that the dead person was strangled or someimes drowned. But I promise you no one has been sneaking in and trying to strangle my feet while I sleep. Remember, the dogs lack pre-hensile thumbs. And low howls at the first evidence of intruders. so....

Likely these date from last week when we know my platelets were low and I just failed to notice them until today. If not, it may be a sign that my platelets are dropping rapidly in response to this latest round of chemo. On the good side - that is clear evience the chemo is doing what it is supposed to do. On the down side - it may suggest another delay may lurck in my future. Time will tell. We will get the first hint when i have my blood tested this thursday.

The people who clean my home every other week came this week and suggested that could help me take down the Christmas decoratins and put them away. Hmmm. I told them my cousins were coming on April 25 and I had promised them they could help take down and put away the Christmas decorations as a celebration of finishing my chemo. That made my cleaners happy. I hope have have finished chemo by then but if not, I will still be ready for the Christmas decoratioms to go away. Somehow once Easter passes they cease to seem festive and become sort of tired.

That is all the news that is fit to print for today.

6th cycle successfully started

2010-03-29T21:57:00.003-04:00

Blood counts were adequate today, so we successfully started the 6th and last cycle of standard chemo. That means after starting the day getting blood counts done at the hospital, I received my 3 chemo drugs, had a doctor visit (well really with the nurse practitioner who works with dr. Green but he also dropped by later), and got the schedule straightened out for the next part of the chemo.

The next 2 weeks, assumeing my cell counts hold up, I will get taxol alone on Monday. My wonderful chemo nurse Elizabeth will be on a well earned vacation in Hawaii the following week, but has arranged for me to get my chemo here in Atlanta in the office of Dr. Green's partners. And the third week in addition to the Taxol on Monday and the labs on Thursday, I will have to get additional labs, have another doctor's visit, and get a CT Scan. It will be a very busy week.

If I have the schedule right, and if all the counts hold up, the following week I will be finished with standard chemo, but not with the whole run. I will start the part of the investigational trial where I get Avastin alone the first Monday of every 3 week cycle and will continue this part for nearly a year.

I also hope to start back to work that fourth week.

All in all it will be a pretty busy 3rd and 4th week. Wish me luck.

Z-Z-z-z-z-z-z

2010-03-26T22:30:00.001-04:00

So after all that bragging about my stamina yesterday i spent most of the day today dozing in the recliner chair again.

Oh well, I still have the weekend to try to knock off more of the past due paperwork before I get dosed with poison again - I hope. The clinic called to say my platelets (labs from Thursday) were up but only to 95,000. So I have to have labs tested again Monday morning before I can get the chemo. Since they only have to rise another 5, 000, hopefully they will accomplish that by Monday and I can proceed to start the 6th and last cycle without further delay.

My day in court

2010-03-25T18:16:00.002-04:00

A week without poison is a wonderful thing. My amazing increase in mental concentration and physical stamina is remarkable and reassures me that the recovery period (once I stop pouring poison into my body every Monday) may be a lot faster than I had been thinking.

Today was the day I was required to appear in court because of that speeding ticket that I received about a month ago while en route Gainesville to get my labs tested. the assigned time was 2 PM.

Today was also the day I had to drive to Gainesville to get my labs tested. So I started my day rather early in order to get to GAinesville, collect all the labs, get back to Atlanta, and find the court which is a long way from my house in southwest Dekalb County.

I have been quite worried about my stamina and ability to manage the court date. I have also been worried about spending time in a crowded court room full of people, some of who were likely to have things like colds, flu, possibly even multi-drug resistant TB. But there was nothing optional about the citation. Show up or your driver's license will be suspended and a warrent issued. No other alternatives were offered.

So it was a relief that my last transfusion was last Saturday in prep and that this week I happen to have bonus energy because of the deferred chemo. Little did I suspect how important that would turn out to be.

After dressing in a suit and putting on make up for the first time since I quit working, I drove to Gainesville, gave blood, and got back, and went to CVS to invest in a supply of surgical masks with still an hour to spare before I was required to be in court. Seemed at that point like I was doing excellently well.

About the surgical masks: those are the little green masks that people can put on by looping things over their ears (used to have to tie them around your head). How good a job do they do preventing infection? Well that is debated. We used them when I was a medical student and only about a quarter of our class converted their PPD skin test and had to take a year of medicine to prevent TB illness. The official recommendation for both H1N1 flu and TB from CDC is currently an N-95 respirator, which will make it almost impossible for a virus or other microbe to get in. As it turns out I own an N-95 respirator - a large grey mask with large bright pink filters on either side issued to me during the Hantavirus outbreak. Any of you who received Christmas letters back in 1993-4 may recall one with a photo of me, gowned, gloved, wearing a large loud face-obscuring, alien-bringing-to-mind face mask and shaking a rodent out of a trap into a plastic bag. Yup. that is the one.

So I considered wearing it to court today. Probably if I had been a doc advising a patient how to prep for a long day in court surrounded by lots of people of unknown health status that they could not avoid closely associating with, I woudl have said "Look, it is your health on the line. Just wear the mask and look foolish but protect your health".

But doctor's make bad patients, I was not eager to draw so much attention to myself in a public display, and a little afraid that the court woudl think I was grand standing or trying to be a smart alack, so I went for surgical masks instead.

Circumstances of my citation: entering the Interstate to drive to Gainesville I noted 3 Dekalb count police cars lined up on the right hand edge of the interstate (an uncommon sight) with the door of the middle one open and a policeman aiming what appeared to be a radar gun directly at me. So naturally I checked my speed. Fortunately for me it was 63 and since I thought I was in a 65 zone I breathed a sigh of relief and continued with my habit of immedaitely moving over to the 5th lane just next to the HOV lane. This is the least trafficed lane. Further more when I exit for Gainesville I do so by moving onto 985, which exits from the left. So... it is certainly the easiest and probably the safest way to make this particular commute. I remember noting that the traffic was heavier than it usually was on my Thursday commutes to Gainesville.

So cruising along in the 5th lane, imagin my surprice when a cop car comes up behind me with his lights flashing. I pull over (which took a while since I had to traverse 5 lanes back to the right hand side and pull over). (but it also took the cop a while to get up the nerve to get out and walk up the edge of the interstate to my car. you would think that if you were driving along and you saw a car pulled over to the right and a cop car right behind it you would automatically move into at least the second lane to decrease the liklihood that the cop would get flattened when he tried to exit his car and walk up to mine. But apparently this thought did not occur to my fellow motorists so... Flinch...flinch... eventually get out and come up.

to my surprise he told me that the laser gun, operated by a different cop whose name he gave me, had clocked me at 75 in a 55 zone. I told him I thought it was a 65 zone. I was wrong. I also told him that I would protest that because my speedometer when I was directly by the guy with the gun had read 63, which is no where near 75. He repeated the name of the guy who had the gun, in a way that seemed to disclaim responsibility for the accuracy of the clocking. And gave me a citation that required me to present to court today at 2 pm. No option not to just pay the fine and skip the court call.

So today, after weeks of worrying about my physical stamina and risks of infection, i went to court. So did, by my count, about 50% of Dekalb county. When I arrived the first clue this was not a normal day in court was the fact that I passed 3 filled parking lots and had to keep driving into what felt like the wilderness to find a lot I could park in. the second clue was the line of citizens that snaked around 2 sides of the building just waiting to get into the building. The third clue was the fact that the traffic violations were being tried in 3 courtrooms divided by first letter of your last name. The final clue was that a policeman was screening at the door telling you if you just took yourself over to the far lane and got into the line where you immediately paid your fine today they would knock 10 miles an hour off your citation.

Amazing - I have never been aware of the police having fire sales for discount citations before. I have never seen such a mass of people being herded into court before. But then I have never seen the police lining up on the interstate with 3 cars on the sholder using a lazer gun and the other 2 police to chase and issue citations before. The effort seemed puzzling since this is not a part of the interstate that has many accidents. I travel it regularly and have never seen a crash. But the county and city governments are experiencing financial hardship leading to furloughs of critical public safety personnel, and therein lies, I suspect, the motivation behind this set of speed traps (I witnessed the same performance 2 more times in the next couple of weeks with 3 Dekalb county cars, and now frequently notice one gwinnet county or Hall county car further up the interstate sitting on the side of the road in the more usual (and safer) manner looking for speeders.

The problem with this is, puzzeled how my speedometer could read 63 and the laser gun read 75, unable to convince myself that between the ramp where i entered and the very next exit where I pulled over I could have possibly sped up more than 12 miles per hour beyond the last measurement I noted on my speedometer, I had done some research on the accuracy of laser guns. And here is what I learned.

They are most accurate when following the car for longer periods of time. Whether a laser gun or a radar gun, they cannot lock onto a car and follow it despite larger vehicles passing in between then with out a clear line of sight to that car. So for instance when I was riding along in the 5th lane (the only time I could have sped up without noticing it) with 4 lanes of moving traffic between my little compact car and the guy with the gun, it is likely that the speed the speed of the intended target car (my car) but rather that of some in between vehicle. And lastly there was information I did not fully understand that talked about cosine effects and stated that if a radar was 30 yards off the target lane with a 300 ms sample period (I assume this is 30 millisecond but who knows...) and a +/- 1 mph accuracy, the gun could not measure a target going 65 miles per hour accurately if it was less than 230 feet (77 yards) away. While I did not understand all the physics, I did understand that the only time he could have directly tracked me before I crossed over to the 5th lane I was far closer to him than that, due to the position there on the shoulder.

So I had decided that I would not just pled guilty and pay the fine, I would agree to pled guilty to my offense (63 in a 55 zone) but not to the citation (75 in a 55 zone) which was obviously an erroneous measure for all the reasons outlined above.

a note, the week before I got the citation a law had changed that raised the ticket price considerably for anyone going more than 20 miles an hour above the speed limit. Further suggesting to me that it was not a coincidence that the citation said 75 in 55. The county needs money.

but between then and now the little parades of 3 police cars on the edge of the interstate targeting cars have disappeared. and today the county is offering a deeply discounted sale on tickets if you just quietly give them your money right away and go away. I interpret this to mean that someone in the county police office had figured out the same things I did about the likely accuracy (or lack thereof) of laser citations under these circumstance. That Plus the more junior cops probably got tired of putting their lives on the line pulling people over on the interstate and then having to get out and walk along the side of traffic flinching every time a vehicle sped past for no reason that had to do with public safety.

I declined the deal, but sat in court watching long lines of folks who had accepted it being processed before court started for the rest of us who stubbornly chose to skip the sale. Which, by the way, still packed the courthouse. Then they processed us into two groups - those pleding guilty or nolo and a second group pleding not guilty. This group was much larger and would have to go to court at a later date. I suspect that it is rare for more than half the people required to show up in court to pled not guilty and agree to go to court. So maybe many of them had been doing the same research I did.

But court is intimidating and scary. Sitting there I began to worry that I had made a bad decision. Could I prove what my speedometer said? Well, no, I was alone in the car. Did I want to incur the cost for the state of a court trial (which woudl likely exceed the cost of the ticket) for something so trivial? Well not really. Suddenly it seemed utterly inadequate to stand up and explain what had seemed really logical before - the discrpancy between my speedometer reading and that of the laser gun which exceeded all reasonable margins of error, the multiple aspects of the physical situation that raised the probability that the laser reading was, indeed, inaccurate. As it appeared to be too late to just knuckle and pled guilty, which I truely do not believe I am but court and disagreeing with police is scary, I decided maybe I needed to call a retired judge that I knew and ask for a good lawyer. This whole thing seemed to be blowing out of proportion, but then that was what they counted on when they did mass citations of people targeted under conditions that likely did not result in accurate laser gun readings, then required them all to show up at the courthouse and offered a deal where 10 miles an hour were knocked off the citation if you just lined up and paid your fine immediately. Which does not seem right, no matter how much financial trouble the county is having. And tends to undermine trust in the police. At least my trust.

In the end, when I was called up to talk to the clerk to schedule a courtdate I handed her my paper pleding not guilty and told her I was unwilling to pled guilty to 75 in a 55, which I believed was erroneous. I did, however, prefer to avoid going to court and I was willing to pled guilty to what I was guilty of, which was 63 in a 55 zone. She told me if I went downstairs to the cashiers and paid the fine today they would knock 10 mph off the citation, so it would be 65 in a 55. I said fine, hot tailed it to an ATM, took out a bunch of cash, and went back to the cashiers where I stood in line for nearly an hour to pay my fine. Sometime during that hour it occured to me that this was the same deal the cops were offering to anyone they could convert before the court hearing.

Not sure if I won or lost that one. But no one in DEkalb county should really need to pay property taxes this year and I am confident we raised enough money this one day in traffic court alone to practically stop all furloughs of public safety officers and to build new schools all around.

Another odd thing - the crowd was more than 95% black. I don't know the composition of Dekalb County, but the repsentatives from 3 of the 6 districts are black and the other 3 are white. If that reflects demographics, the people in the courtroom were way disproportionately black compared to the county population. Racial profiling? hard to imagin since the cops, court clerks, and cops present in the courthouse were almost universally also black. But it does seem that something is disproportionate in who winds up being required to come to court for traffic citations. Maybe there was some deal I missed where you got to have 10 mph knocked off your citation AND did not have to actually show up and spend your day in court.

But for now, it is over and I am grateful. And when I remember practically lying on the counter when forced to stand in line for an hour in the post office to mail something important by overnight mail, and compare that to today when the only weird thing about my behavior was wearing a surgical mask, I am grateful that this was the week chemo was deferred and my energy level way up.

On the way home I dropped all my tax prep paperwork with the accountant. Another chore knocked off before I again start droping poison into my system weekly.

2010-03-24T21:08:00.002-04:00

http://www.moesmisadventures.blogspot.com/

My college friend Gina (Mac '74) in Seattle is a smart lawyer, savy political commentator, and as the daughter, sister and mother of physicians and currently a lung cancer patient, a person with an acute interest in health care legislation. I just discovered that over the past couple of days she had posted a series of thoughtful and informative (summarizes key components of the health care legislation passed by congress and provides informed commentary on the probability that the lawsuites arguing that the federal government does not have the constitutional right to impose a requirement to buy health insurance will succeed) on her blog, the link to which I have taken the liberty of posting above.

The purpose of her blog is not to debate health care, so if you have negative reactions please send them to me in an email instead of bothering Gina with them (unless you are a friend of Gina's in which case, swing away).

Myself, add me to those who believe that the current American system needs reform. And that a base of government sponsored "socialized" medicine that provides the basic essential medical care to all Americans to supplement the better policies that all cannot afford would be a very very good thing.

After all, government medicine is providing my health insurance (Tricare) and medical leave (PHS policy on medical leave) and is the insurance and health care provided to all vets who seek care at the VA, to all uniformed services active duty and retired and dependents, and to medicare and medicaid beneficeries. Not to mention members of congress.

Time will tell whether the specific provisions in this legislation were wise or not. But for myself, I think it is time something began to change. If you have access to good medical coverage, and you do not work in clinics where you prescribe necessary medication that patients cannot afford to fill or EDs where people with no coverage present for emergency care that could have been avoided if they had had the option to present for preventive care, and if you do not work with these folks enough to learn their stories which rarely are as irresponsible as it is convenient to believe if you want to maintain the self -protective belief that others have less benefits than you because their behavoir has made them less deserving - then it is easy to think that the system is not broken for far too many Americans.

This does not solve anything - but at least it is a start in the right direction.

If you think we can't afford this, then raise my taxes (and those of all Americans in my tax bracket and above - but not below). We can afford to provide minimum care for our most needy and prehaps it is a better thing to do than buying bigger houses, redecorating more expensively, or investing in additional stock portfolios.

Just my opinion, but i am sticking to it. The wealthiest nation on earth should not have one of the lowest prenatal visits and highest perinatal mortality rates and the majority of bankruptcies should not be due to unexpected familial medical expenses. It just should not be so.

Gifts this week

2010-03-24T20:53:00.002-04:00

On Sunday a friend from work brought over a large supply of home made Irish Stew and stuck around to watch TIVOed Harry Potter movies with me.

On Monday my neighbor took me to chemo and back, then brought over a large supply of delicious home made beef and vegetable soup.

On Tuesday I recieved a note from the Sylva First Baptist Wednesday night prayer circle and a large CARE package from my neice Emily, who thought the remainder of my chemo would go better if I was supplied with popcorn, her favorite movie, a large U Oklahoma T shirt and spotted Sooner socks.

By Wednesday night when my neighbors across the street supplied hot fresh home made pancakes and grapefruit for my dinner, I had realized that having to delay chemo this week was a blessing in disguise. My energy and mental concentration has been notably better allowing me to (cumulatively since Monday) return to work and clean out my cubicle and check the job postings, catch up on bills and paperwork in most cases (still behind on going through all the medical bills...), and get all my paperwork organized to be able to take it to the accountant before the March 30 deadline for this tax season.

Wednesday I also receieved calls from my sister in law Dore and my cousin Ed confirming plans to visit in April. and from my sister just checking in.

All in all, not a bad week. Tomorrow I have to return to Gainesville for lab work, go to court to argue that I think the speeding ticket erroneously recorded my speed (my speedometer said 63, not 75, and the difference in fine is considerable). Then I have 3 more days to finish the remaining paperwork before I get dosed with poison again (hoepfully) on Monday March 29.

If all goes as planned, I will start my 6th and last cycle of chemo on Monday MArch 29 and complete the 3rd and final dose on Monday April 12.

Fingers crossed.

Last Chemo cycle delayed

2010-03-22T22:18:00.002-04:00

Today when I went for chemo I started the day by reporting to the hospital to have a STAT blood count done. this has been required every time my lab test on the prior Thursday show a white cell count or hemoglobin (red cell) count that is too low to allow receipt of the chemotherapy. Which means it has happened essentially every week (every week except for 1) for the last nearly 2 months. Every since before my first transfusion.

This Thursday my hemoglobin had been low enough that I was required to go in for another transfusion (the third) last Saturday. And the white count was low enough that I had to repeat it this morning before I could get chemo.

But this morning for the first time I had blood counts that were too low to get chemo. Ironically not the white cell count, which was 2,200 which is higher than it has been for some time. (it has to be at least 1,500 before they will give me chemo). And my hemoglobin was so high that I did not even qualify to get the shot of erythropoitin that I have gotten nearly weekly for some time.

But the platelet count was low - 85,000. Normal is over 100,000 and that is what is required to receive the chemo treatment. Below 50,000 there is real danger of bleeding problems since platelets are important to help blood clot.

So the start of cycle 6 has been delayed a week to let my blood counts recover.

This may be a good thing. The neuropathy (numbeness and tingling in my hands and feet) has been getting worse and interfering with my ability to open packages sometimes. Hopefully with a week of no chemo it will improve a bit before I start poisoning the system again.

Also, while the original sporothricosis lesions have cleared up on therapy, I noted Saturday night some new lesions on my right thumb. So maybe it is good to give a full week of Itraconazole treatment for the sporotrichosis before I knock my white blood cell down again. It can spread widely in immunocompromized hosts and I don't really thing that would improve my exprience, so happy to do whatever I can to keep it contained.

Of course this will delay my completing the course by a week, as well as my returning to work by a week.

In the big picture I am quite lucky to have gotten this far without delays, and this is really a rather small thing overall. I am just getting impatient to finish and move on to the next phase.

Well, I can manage one more week.

how we talk about cancer

2010-03-20T22:52:00.002-04:00

http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/

the link above takes you to a New York Times Health article that discusses experiencing cancer and the language we use to try to describe it. Gina Cullen (Mac '74 from Seattle) identified it on her blog, where she often shares her experience with lung cancer, and I appreciated it enough to copy it here.
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For myself, I agree that "fighting" does not sound like what I am experiencing. Neither does "bravery". More - since i have given up on working for the remainder of my just over 3 weeks of remaining chemotherapy and mostly spend my days sitting in a recliner chair watching South Park, old Harry Potter movies and other things TIVOed from cable with the dogs - I would have to say I can't remember when i have felt more relaxed - a state not really compatible with "fighting".

Nor does "brave" seem to describe my internal emotions. More like "acceptance", a far less demanding emotion.

I am optimistic about outcome here, but recognize realistically that the optimism may not predict outcome. Putting things in order internally and externally is an easier stage than the periods of life when I have been struggling with persistent hard battles. This one is mostly out of my hands - although I fully intend to do whatever i can to make decisions and take actions that will tip the balance in optimistic directions.

Beyond that, each day the primary thought is, given the limits of my time or (these days mostly) energy, what is the most valuable use of the time available to me today? that is the most important decision I face these days. Actually probably the most important decision any of us face any day - just much of our lives we have the luxury - or disadvantage - of not being conciously aware of that.

Thanks again to all of you for your support, your friendship, and your gifts to my life.

68 degrees and climbing

2010-03-20T22:30:00.002-04:00

Atlanta weather took a sudden change into spring. The past couple of days the temperature has been sunny and in the high 60s, lovely spring weather resulting in large numbers of daffadils blooming out in the yard.

This was good timing, as the SHEA (Society for Health Care Epidemiology and ?) meeting took place in Atlanta this weekend and large numbers of medical scientists and other professionals descended on our fair city as a result. Including Stu Johnson with whom I had a lovely dinner on Friday night. Between the two of us, we caught up on most of our fellow interns from so many years ago. Stu came equipped with a thumb drive full of the latest photos of his family and friends, but neither he or I could figure out how to download it to my Mac. So I had to settle for verbal descriptions.

My ability to enjoy the lovely weather was impaired by being required to again travel to Gainesville for the usual weekly laboratory testing on Thursday, but then in addition to spend part of Friday being typed and crossed (lab testing in prep for another transfusion) at Northside Hospital in Atlanta and then spend most of today at Northside actually getting the 2 units of packed red blood cells. The Friday experience was prolonged because for the first time my port did not seem to be working well - but that was straightened out in the end. (My port is a permenant indwelling thing that allows me to have blood drawn and receive chemo or transfusions or other things by vein without having to have a new IV placed each time).

But now post transfusion again my energy is higher and tomorrow, Sunday, is another open day. Hopefully the good weather will hold, I will get some chores done at home and have some time to spend sitting in the yard enjoying the weather...

Monday will be the first treatment of my last cycle of standard chemotherapy. That means it will be my last 3 drug treatment day (Taxol, Carboplatin, and Avastin), and will be followed by 2 successive Mondays of 1 drug only (Taxol - the flower power drug), after which I will have completed the standard chemotherapy portion of this treatment. That will be followed by the investigational phase during which i will continue to get Avastin IV once every 3 weeks for approximatly a year. However, the Avastin alone is not expected to have a big impact other than further beating the cancer into submission. I expect that after April 5 my hair should start growing back, my strength and mental concentrating ability should begin to return, and I should be able to start building back in multiple way and return to work.

Small victories

2010-03-16T21:24:00.002-04:00

Yesterday my friends Robert and Cuca worked together to get me to chemo, although only Robert drove because Cuca was nursing infection and thoughtfully did not want to share. Completing this chemo treatment finished my 5th cycle of chemo therapy. Now I officially only have one cycle left to go, which will begin next Monday March 22 and end the Monday after Easter - symbolic timing for a new beginning.

The chemo-associated neuropathy (numbness and tinginling in my hands and feet seems to be progressing (legs, back face) but the good news is (1) now that I am taking vitamin B 12 and B stress complex in for 2 weeks and in recently larger amounts it seems to be stabelizing or even receeding. Much better today. (2) at least part of the increase is likely due to the addition of the Itraconazole for treatment of my sporotrichosis since numbness in hands and feet is an identified side effect. (3) all should recede (hopefuly back to normal) when the chemo is over. (4) if need be they can decrease my doses or change to another drug. HOWEVER since beating back this cancer is more important than short term discomfort I am hoping to finish out this last cycle with full dose first line drugs so...

Today - my steroid burst high energy day - I was able to make lots of progress on that pesky home paperp work. Did not totally finish making all the changes nescessary to close out the old bank account and open the new. Did not start on putting together the stuff I need to send to the tax preparer. Did not finish with the credit card straightening out (the slow phase being reviewing every thing to ensure no fraud before I pay) but substantive progress none the less. And tomorrow is another day when I should make it to noon on the residual chemo steroid burst before I start losing energy.

Made it all the way through the day today with out a nap. Although I did pause mid afternoon for a long soaky hot bath using (1) the little blue floating ducky from the Gina in Seattle care package, (2) the lavender bubble bath, liguid soap, and after bath body lotions from the First Baptist Sylva Care packages, and (3) the home made pepermint skin rub from the Emily Buchannan Care PAckage. I decided if my standard chemo time is running out then I better pick up the pace on using up my chemo-support care package contents. I think I am making pretty good progress. Thanks guys, for all the raw ingredients.

All in all a good start to the week. Now to see what I can accomplish tomorrow.

first Daffodil of Spring

2010-03-13T18:18:00.002-05:00

The first fully bloomed out daffodil of spring was spoted in my back yard today. Other good things: Managed to get the dogs to the vet for their shots.

On the other hand, catching up on personal paperwork is going very slowly, as I seem to wear out after a couple of things and spend a lot of time in the middle of the day napping. And the chemo-associated neuropathy seems to be progressing. Hopefully it will recede after I finish chemo, but I have upped my daily doses of Vitamin B-12 anyway.

Well, A little progress a day is better than none. And only 1 cycle left after the last dose of the 5th cycle this coming Monday.

What I need now...

2010-03-07T22:38:00.002-05:00

Thanks to all of you who have offered to drive me to chemo. As of now I think all the remaining Mondays already have an associated volunteer driver. However, i am keeping the list of those of you have have offered available in case I need back up. And for all of you who have taken the time and effort to drive me to 1 or more chemo appointments, Thank you very much. You have made this experience so much easier and kept it from being lonely.

Also thanks to those of you who have, as my energy has receded, come by the house with food, company, assistance with delivery of dog food, grocery shopping, folding laundry, cleaning house, or other efforts. Each little effort has really helped. And I am also appreciative of those of you who have offered help when I need it. If I have not taken you up on the offer, that does not remove the support provided by the offer. I have all the cards still displayed in my living room, where they will all remain along with my Christmas decorations until i finish the standard chemo part of my therapy in April.

So again I thank you all for your remarkable support. I have no unfilled needs at present, but appreciate all your offers of support for when I have and may yet need them.

I am very fortunate to have a community of friends like you all.

Louisa

More Good News

2010-03-05T21:20:00.002-05:00

A study out of Japan says that women who get "dose-dense" chemotherapy - which means Taxol (my flower power drug) divided into equal doses each Monday while getting carboplatin only on the first Monday of each cycle - have an approximately 2 year survival advantage on average over women who get all carboplatin and taxol only on the first monday of each cycle.

I am getting dose dense chemotherapy - so this is good news. Add that to the avastin advantage and i am feeling very good about having decided to enter this clinical trial.

Also getting rather tired of constant and growing fatigue and being confined and being bald. ONLY 5 more weeks to go!

What's New?

2010-03-03T19:03:00.002-05:00

I hear Brother in law Joe is not only home but back in the office working. Martha, on the other hand, is exhausted and trying to catch up on school.

Jacob P Dawg Chapman has ceased his falling spells and appears to be in no more pain. Whatever went wrong with his spine or hip seems to have corrected with a few days of rest and that new pain med the vet gave him. Hopefully it won't return for a long time. No more falling spells.

Louisa post-transfusion went to the doc on Tuesday and got diagnosed with sporotrichosis (a fungal infection) in her finger and is now on treatment for that. This probably has nothing to do with chemo, except that I got stuck with a splinter from a table that had spent most of its life outside sometime in early January, and acquired an infection from that that is slowly spreading. MAybe the chemo gave it a foot hold, or maybe I was going to get it anyway. The good news is, I finally have an interesting case to present at the InterCity ID Dinner Conference...

Louisa post-transfusion gave a massive push to get through the paperwork that was building up before terminal fatigue sets in again. Good thing, as I discovered today that someone was faudulently having his CITI AMEX automatically paid out of my account since January. Closed that account, opened a new one and now I have to find the energy to transfer all the things that are automatically paid into or deducted out of that account... Sigh. A lot of work. And I still have to work my way through the credit card and medical bills that I did not get to today.

My sister Martha is due for a visit this weekend and to take me to chemo on Monday. I am looking forward to the visit.

The dogs have enjoyed the string of visitors through this house (the large contingent of Arkansas cousins, the small (n=1) contingent of Ark Cousin, and soon the sister). They are somewhat lonely left with just me. Further, they seem puzzeled as to why only 1 of us was allowed to watch the olympics from the perch of the recliner chair. Occasionally Balsam challenges my supremacy there - yesterday he tried to sit on my lap again which was how he went off to sleep for the first phase of his puppydom. Unfortunately (or fortunatly) a large 70 pound Plott hound does not fit securely on the lap of an adult sitting in a recliner chair, so he rapidly fell out and did not try again.

Medical Adventures of the Extended Chapman Family

2010-02-26T19:53:00.002-05:00

(1) Brother-in-law Joe is expected to return home tomorrow from Duke hospital where he had resided for the past couple of weeks, recieving a new pacemaker that hopefully will prevent exciting cardic events like the one that precipitated this hospitalization and the one several years ago at Thanksgiving in Charlottesville, VA.

(2) Last night Jake began to experience falling spells. Several for unclear reasons that seemed to be due to his hind legs collapsing. This morning the dogs and i visited the vet, where both dogs received baths and returned home smelling better. In between baths Jake consulted a vet who thinks his difficulty staying on his feet is probably due to arthritis in his right hip and possibly also a disk problem in his back. He returned home with new pain medicine that is stronger than before and is now sleeping very peacefully, and apparently without discomfort.

(3) Louisa got a phone call in the middle of the vet visit telling her to report to Northside hospital for a type and cross (laboratory testing necessary to match a patient to donated blood to enable a transfusion). Leaving Jake and Balsam in the good hands of the vets and groomers at Vernon Wood Animal Clinic, I did. When I returned the doggie x-rays were finished, the medication perscribed, the baths finished. Balsam, true to form, howled continually whenever he could not see Jake. Fortunately I was mostly at Northside and missed all the fine sound effects.

Tomorrow at 10:30 I return to Northside to actually receive the transfusions. Meanwhile i type despite the multiple little gauze pads taped to my hands bilaterally. Having a port does not always mean people use it for blood drawing, and my veins are not so hot.

Well, tomorrow my hemoglobin (the part of the red blood cell that carries oxygen and therefore supplies energy to all cells in your body) will hopefully rise above the 7.7 it was yesterday (about half what it is supposed to be) and based on past experience, I will emerge a new woman with renewed energy. which hopefully will last long enought to allow me to catch up on all my paperwork, filing and bill paying.

Did I mention that I am ready for this to be done? But really I should not complain. Things have gone very well to date and Monday I start the 5th and next to last cycle.

(4) the numbing and tingling in the tips of my fingers and toes suggests that I am beginning to experience some of the peripheral neuropathy (irritation of the nerves at the ends of my limbs) that sometimes accompanies this form of chemotherapy. Usually this goes away when chemo is over. Meanwhile my doc says taking Vitamins B12 and B6 may help.

Did I mention that it is more fun to be a medical provider than to be a medical care recipient? But overall, no complaints. After the visit from the extended Ark Walker clan 2 weekends ago I now have a shorter visit from one sole member of the Ark Walker clan (cousin Robert's son Nathan) who has been wonderful about hauling out my trash, lifting Jake in and out of the car, bringing me Chinese take out food and ice water and other such things. Can't complain about getting waited on hand and foot now can I?

Good News!

2010-02-25T19:26:00.003-05:00

After having my doctor's evaluation today that is required before starting cycle 5, the next to the last cycle of standard chemo, I am officially two/thirds of the way finished with the standard chemo portion of this experience. I start cycle 5 on Monday and then have only 6 weeks of chemo left to go!

Excellent, I am ready for this to be done and for the fatigue to begin to receede. It might help if it would warm up outside. The temperatures keep hovering in the 20s. (OK you folks in Minnesota. I heard that snicker. All I can say is in this neck of the woods that is really really really cold. Just ask my dogs.)

But here is the really good news. Today one of you forwarded to me 2 press releases from Roche and Genetech. Both reported that the results of a Gynecological Oncology Group trial prior to my own (GOG-218) show a definite survival advantage to receiving Avastin! Avastin is the experimental drug that I enrolled in my own study to receive, and the reason I am driving to Gainesville, GA for treatment instead of more conveniently recieving it right here in Atlanta.

The trial GOG-218 divided women into 3 groups. All three groups got standard chemotherapy using the same 2 drugs I am getting (Taxol, my flower-power drug and carboplatin or a similar drug). In addition the first group got a placebo (fake drug) during and for about a year afterwards. The second group got Avastin with the chemo therapy, then got the placebo fake drug for the year afterward. And the third group got Avastin during chemo and for the year afterwards. The third group had a better outcome (defined as longer progression-free survival - survival without evidence of progresion of the cancer).

This is very good news for me. My own trial divids women into 3 groups, each of whom get a different variation on standard chemotherapy, but all of which get Avastin wiht the chemo and for a year afterward.

YEAH! VAlidation that it was worthwhile to drive to Gainesville for chemo and to enter this clinical trial.

The dogs are very happy. So am I.

This is a press release from the company that sells the drug, but the scientific data is scheduled to be presented during the annual meeting of the Association of Clinical Oncology in June, which is where all the professional oncologists go to catch up on the latest data.

WEekly update

2010-02-20T15:26:00.002-05:00

My friend Caren and my Aunt Rita have both told me that when I wait too long between blog updates it worries people who follow that something is wrong and so I should update more often.

There are 2 problems with this.

First, when there are long delays between blog updates it probably does mean that I am really feeling the chemo-induced fatigue and having to carefully marshall energy to attend to the most essential tasks. At the moment those include getting through the mail that has piled up for weeks and paying my bills and preping my taxes. Something i keep thinking about but not acting on.

Secondly, as I cut back to 2 days of work a week and curtail trips out of the house to limit exposure to infection, my life is not overly full of things I think you might all just be panting to hear about. The big excitment today was either driving through the drive in of Einstein Bagles to pick up breakfast with out getting exposed to people sitting around in side possibly harbering infections, or maybe it was ordering in the PizzaHut pizza for lunch. With Dr. Pepper. Hm, Hm, good!

or possibly it will be something that comes up on my further explorations of cable television. I just discovered a whole streak of travel shows that make me eager to finish my chemo and go somewhere on vacation...

The highlight of yesterday was finishing off the fresh cantalope and blueberries with cream that the Arkansas Walkers left behind after their visit.

the weather is finally warming up so the dogs can spend their days in the yard instead of the house - they like this and so do I. Makes it easier to eat pizza without inappropriately intruding cold noses.

The highlight of tomorrow will be paying bills and working on tax prep. I put it off from today on the theory that I will have more energy tomorrow...

If any of this just sounds like excitment you can't by pass- come on over and join right in. Meanwhile, I am spending most of my time watching TV or reading in the recliner chair. One disadvantage of the transfusion - pre-transfusion I was too tired to feel confined. Although it was slightly annoying that I kept dozing off and had to watch the same TIVOed shows over and over again to follow the plot. Now post transfusion I am largely too tired to do anything productive, but feel good enough to be annoyed by it.

For those of you who know Gina Mac '74 in Seattle but don't follow her blog - latest tests show a 25% reduction in tumor mass all over! This good news just after she returned from a trip to Hawaii! So congratulations are in order these days for Gina.

Gina Mac'74 from Seattle also used her blog to bring to my attention a video produced by the Macalester College President Brian Rosenberg for President's Day. It was hysterical and probably can be found on the Mac website (or at least the Macalseter College Facebook website) for the interested. The Mac Alumni event in Atlanta occured the night before my transfusion when unfortunately I was too exhausted to attend, but fortunatly for them the day before the big Geogia snow storm which shuts this city down in ways no one from Minnesota could believe or understand.

So doing well for now. Thanks again for your support.

What a difference a day makes!

2010-02-15T22:35:00.002-05:00

For those of you who think perhaps I was overdoing it on a hemoglobin of 7 let me clarify - it was the dogs, not me, who were romping in the snow before I departed for the hospital and my transfusion last Friday.

And I was not dizzy walking to the car and once I was sitting behind the wheel was perfectly fine. It does not take so much energy or effort to drive an automatic car through a drive in window and pick up a sandwhich on the way to the hospital in clear weather. So really, I do not think I was a danger to myself or others driving in.

It is true that I seemed to go down hill over the course of the afternoon and probably was having my blood counts continue to drop, and that once I had to leave the car behind in the parking lot the demands on my underpowered oxygen carrying capacity did increase. And probably I should have anticipated this. But in my defense before they decided to keep me overnight and transfuse me I was considering taking a cab home and to return in the morning. and also thinking that since I have been getting weekly steroids IV every Monday since Dec 7 with my chemo, maybe when I see Dr. Green next thursday I should inquire whether dropping BPs on Thursdays and Friday are entirely attributable to red cells or if I needed to worry about adrenal insufficiency developing in response to the chronic steroid use...

Although since I had gotten a speeding ticket on the way to have my blood checked in Gainesville on Thurdays it occurs to me that showing up in court and claiming diminished capacity with my bald head might be a decent defense. All I would have to abandon is a bit of pride and well maybe integrity. The truth is who knew that the speed limit where I routinely enter the I-85 is 55 and does not rise to 65 until I pass I-285? There are speed limit signs, but honestly only 1 between the N Druid Hills entry and I-285 and usually I am too busy tracking traffic to search for them. Plus since I have been repeatedly rear ended during my life in Atlanta but only once rear ended anyone else, I am leery of driving 55 when the prevailing speed of traffic is about 70.

None of these sound like very valid arguments so I guess I will just send the payment in. And hope it does not result in remarkable rises in my car insurance rates. And try to stick to the speed limit on future trips while praying it does not result in me creating a hazard on the highway and getting rear ended AGAIN. Sigh.

So now that for the first time in several weeks my hemoglobin is over 9 I am reveling in the joy of having oxygen carrying capacity. Don't tell her but when my cousin Ruth left me alone to search for tires I snuck into the kitchen and unloaded the dishwasher and folded laundry and tonight while she and the rest of the visiting Arkansas Walker cousins are out cavorting with her daughter Dawn and family I sorted my mail. (the chemo nurse forbade me to cavort with children between 5 and 11 even if they appeared to be perfectly healthy until my white count comes up since they did not transfuse infection fighting cells). All without getting short of breath or dizzy.

It is true. You don't appreciate what you have until something takes it away. then you think 'My it was really nice all those years to do whatever I wanted without having to maintain awareness of the nearest thing to sit on if I suddenly needed to and without taking frequent rest stops". Youth. Wasted on the young. And all that.

Well - thanks to the miracles of modern transfusion medicine I am back in the saddle. And wondering how long it will last. Cousin Robert Walker (not the one who stepped off the first ship in Massachusettes Bay in the 1600s but the one who drove from Arkansas this weekend) says 20 - 90 days depending on how old the individual red blood cells were when they got transfused. Keeping my fingers crossed that this will last for most, maybe all, of the rest of my chemo.

Only 7 more weeks of chemo to go.

AND THANKS FOR ALL YOUR SUPPORT - especially at the moment Michele, Mehran, and Judson who loaded and unloaded dishwashers, folded and put away laundry, delivered dog food, took out trash, and performed other menial chores cheerfully while I was having difficulty managing it. (And who hovered around waiting to see if I needed pick up service from Northside despite my insistance that they should go home before the snow started).

And to my Ark Cousins who did all manner of things above and beyond providing company, transport to chemo, meals, cleaning my house, hanging things up and bringing back memories of shared Thanksgivings, Christmases, Vacation Bible Schools, making mud pies, daring each other to eat them, Summer evenings chasing lightening flies and maybe waltzing in the mist from the mosquitoe spraying machines that tracked down every road in town periodically despite being strictly forbidden to come close to them by our parents. But more about that in the next blog addition.

And yes Caren, when there are long gaps between postings it does tend to imply that I am using up all available energy on other things. The longer the gap, the shorter the available energy. You know me well.

Although it is also true that having outlined the chemotherapuetic agents and other basis, my life is not always extremely newsworthy these days. Some what short on exciting adventures to report. For example:

Tonight I spend some available energy watching Real HouseWifes of New York, or maybe it was New Jersey. Never haveing had cable until I got my updated electronic entertainment gear post-surgery (thanks to advice and assistance from Dennis, Mehran, Michele and Judson) I am new to the joys of cable television. Who knew people really lived this way - miles removed from my world of people wearing tacky uniforms (sorry PHS, but in your heart you know it is true) instead of $16,000 purses and spending their days worrying about whether they can get clean water to people with gangrene in Haiti and get at risk people with asthma to take their flu vaccine and trying to figure out whether anyone they know can find someone who wants to donate a flight to get Ruth's volunteer orthopedic surgery team to Haiti on March 20 - sometimes for enough hours to smell not so great by the time they go home. And often failing to look so great when they show up for work in the morning. Maybe I missed the boat in chosing my career and location.

Hmmm, have to think about that. Cable also has shows about people who hoard. ("Michele, did you know there are television shows about people who hoard?" "Uh, well, actually YES Louisa, I knew. That's right, you never sprung for cable before, did you?") That inspired me to make more of an effort to clean out those boxes of papers still stacked in the spare bedroom. Maybe Real Housewives should inspire me to consider spending more on my wardrobe - but not $16,000 on one hand bag while the American Red Cross is begging for donations for Haiti and the homeless man who solicits odd jobs in the neighborhood is seeking $20 worth of work in the yard so he can sleep under a roof on this snowy night in Georgia.

Ok resolved - I will read Vogue more often and maybe consider moving that ratty grey sweather with all the holes that match Balsam's teeth into the rag bag, and might even give up some of the T shirts with permenent stains and ragged sleeves no matter how high the sentimental value. And dump any mascara in my collection that exceeds the 3 month limit. while is all of it. Oh and try to lose that extra 20 pounds AFTER I finish chemo when I can afford to consider calories and other strength building things unnecessary luxuries.

that is about as far as I can take it. Well, maybe I could pay a tailor to make some of my clothes fit a bit better. And iron now and then. Perhaps my sister can help with these efforts when she visits early in March. After all, it was she who clued me in that I was the only fifth grader who routinely buttoned every button on all my blouses. Most people left the first 1 - 3 open. (I paid attention at school the next day. She was right. Who knew? Why would they waste resource putting all those buttons on shirts if you were not intended to use them? It defied reason.) MAybe this example, brought up in court, would add creedence to an argument that I was honestly unaware that the speed limit did not rise to 65 for an additional several miles since I never noticed the one speed limit sign that could have cued me in...Oh forgot, I decided just to pay that ticket.

JEepers, cable TV really is educational.

They are soliciting recruits for upcoming Survivor episodes. Shall we get a team up and volunteer? I'll be available anytime after June...

Weather, transfusions, and dogs

2010-02-13T16:22:00.002-05:00

The photo of my back yard was made at about 3 PM today (Saturday February 13) well after the sun had come out, the temperature had risen to above 32, and the snow had progressively melted. For those of you in the mid-west you may be having a hard time figuring out how it merits publications. But in Georgia snow like this happens rarely - never stays overnight, and mid-February is about the time you start looking for daffadils in the yard. Not the yellow flowers usually, but the green sprouts coming up and heralding that the yellow flowers will follow within a couple of weeks. I thought I saw several last week around my mail box.

Friday I was called to come in to NOrthside hospital in Atlanta for a transfusion due to a hemoglobin of just over 7. Hemoglobin is the part of the red blood cell that carries oxygen, and oxygen is what fuels about every thing the body does. A normal hemoglobin is about twice 7, and the hemoglobin that confined me to a recliner chair for several days last week was over 8.

So after a brief romp in the yard I confined the dogs to the house and took off for Northside to get blood drawn for a type and cross (the lab work needed to be able to set up a transfusion and make sure the transfused blood matches mine). The expectation was that I would return at 9 this morning for the actual transfusion as an outpatient. Luckily i stopped for a sandwhich on the way, since that was the last meal I would have until breakfast this morning.

I got to Northside and staggered around for a long time trying to find the right office. Atlanta hospitals seems to scorn those colored lines on the floor and large explicit maps and signs that make it easier for patients in less than stellar shape to get directly to the pertinent office in hospitals in other parts of the country. (Not just Northsides, Emory is really bad about this but has lovely marble in the lobby to make up for it). So I spend some time and energy walking from place to place, sitting to rest and catch my breath on every bench I passed. Eventually I found the right place. IT was taking an awful lot of will power to keep motoring myself about and when the nurses in the infusion center recognized that I was getting very short of breath and frequently lightheaded with exertion, they took my blood pressure and discovered a systolic of 89. (systolic is the high numbers - normally the low number is about 89). Which explains why I was having such a hard time.

The decision was made that I should not return home without the transfusion, but the only way to accomplish it was to admit me overnight. So instead of returning home I was sent in for a "23 hour" admission and transfused a couple of units of red blood cells. Sounds simple but the transfusions took a while, starting late and finisheing about 4 AM this morning. Meanwhile the weather was getting worse and worse, snow beginning to blow by the time I entered the hospital and the roads iced over by midnight. So instead of coming home when the transfusions finished I was held for discharge after the sun came out and made some progress on the roads.

Meanwhile the dogs were stuck alone inside the house for nearly 24 hours without release despite efforts to locate someone with a key to the house who could go over and let them out. My nice neighbor returned my call, for instance, but reminded me that while we had talked about trading keys we had never acted on it and anyway he was calling back from below the snow line in Florida...

Fortunately when I got home about noon today the dogs were champs! Despite being confined for nearly 24 hours without relief they had somehow managed to not soil the house. they were quite eager to whip out into the yard and showed no signs of wanting to return into the house for several hours, despite temperatures in the 20s, snow, and the absence of dog food on the outside today.

And I am much improved with my new hemoglobin that tops 9 for the first time in several weeks. Even managed a bit of grocery shopping on the way home (I figutred it was too late for the dogs so why rush? but I was wrong...) it if were not for the fact that I had not eaten since the sandwich the day before except for breakfast this morning before discharge and a few stary graham crackers and snacks, and the fact that I was up most of the night getting blood and having vital signs checked, i would be feeling much much better now. I am anyway. I can walk and not get dizzy or out of breath. Terrific.

And my dogs are champs.

So another new experience. My first, but I suspect not my last transfusion. Half way through and counting...

More than halfway done!

2010-02-10T22:19:00.001-05:00

Last Monday I officially got the first 3 chemo treatment of cycle 4 - which means that I am more than half way done with the standard chemo part of the treatment.

Today I officially changed from 2 to 3 medical leave days a week and arranged to work from home on 1 of the 2 days I will continue to work. Felt a bit like a defeat, but I guess getting half way through before i had to cut back was pretty good.

just under 3 cycles and 8.5 weeks left.

Did I mention?

2010-02-06T21:42:00.020-05:00

the supportive emails I have received from Haiti from colleagues I worked with in the past (post-Katrina or on the COMFORT). You would think they would be full up with more acute disasters to support. But what a statement about the quality of the folks I am priviledged to work with. Thanks guys. And in response I post a few pre-earthquake photos of Port-au-Prince, Haiti from September 2007.

Healing Places

2010-02-06T20:46:00.005-05:00

Well, things are getting a little tougher, as I was warned they would during the 4th and 5th cycles. For the first time I had to take an extra medical leave day after spending nearly half a day getting dressed for work but consistently also getting dizzy and short of breath walking from room to room and as a result spent most of the last 3 days hanging out in front of the new TV on the recliner. Which is really not such a bad way to spend 3 days if you ignore the dirty dishes piling up and the undone laundry and the basically absence of any productive activity in your life. I suspect the problem was mainly a hemoglobin (the stuff in your red blood cells that carries oxygen and thereby fuel to the rest of your body) that keeps hanging at barely 8 despite erythropoitin for 3 weeks in a row, a bit of dehydration from not being careful enough about how much I was drinking. And maybe it matters that for the first time my ANC (absolute neutrophil count) was below the risky point where I have to have it checked again on Monday and, if it has not come up, have to delay the chemo dose for a while. Hopefully that won't happen. But it also means that I probably need to get more serious about avoiding crowds and therefore opportunities to get infected. Suspect I will be taking more medical leave days and working from home more for the fore seeable future. And Maybe there is a transfusion in my future.

But it was predicted. It removes the concern I secretly had that maybe the chemo was not going to work because it had all been just too easy so far. AND I have such incredible support. Examples below:

HEALING PLACES 1:

An interesting recent string of possibly unrelated events. First there were those intermittent supportive emails from Debsingsongs (Mac never but SOB sometime between '68-'76) and her sister from North Carolina. Then out of the blue there was that Facebook message from Charmaine Mac '75 and SoB '75 offering to put me on her congrgations' prayer list. Since Charmaine has traded in her gigantic AFro for the title Reverand but kept the soaring singing voice, I suspect that is a pretty large prayer list. Then there were, in rapid succession, the supportive email from Andrea Tibbet SoB now, then Gary Mac '74 SoB '68-2010 forwarding a newpaper article that originaed with Debsingsongs, followed by a second email from Gary Mac '74 SoB '68-2010 containing those emails that speaks instead of typing, specifically the song
The Path to Healing" from the most recent Sounds of Blackness CD "The Third Gift" leading into a string of selected voice emails dating from the days of prep for the Mac cluster reunion in June of 2009 (carefully selected to eliminate all the ones accompanied by the sounds of gnashing of teeth and rending of cloth to leave only those evoking happy memories).

Prehaps I imagin it. But it feels an awful lot like a conspiracy of support.

Thanks guys. Your timing was excellent, arriving just when things got rough. My technologically unchallenged nephew Judson instructed me on how to drag to iTunes (at least I hope it succeeded but just in case i am holding on to the original email, whcih I listened to again tonight).

And maybe this is a good time to reciprocate by copying in the message below for any one who wants to know how to access the most recent CD from that group that began as the Macalester College Black STudent Choir and grew into the 3 times GRammy award winning Sounds of Blackness. (see below)

"THE 3RD GIFT" the new life-changing CD by Grammy-Award winning SOUNDS OF BLACKNESS.
Available Now At BEST BUY, Sam Goody, Electric Fetus and Online At Borders.com, Amazon.com,
CD Baby, ITunes, Best Buy.com, Wal-Mart.com, IODA
Please Call your local radio stations and request our 2nd Single “GOD IS LOVE” from our new CD,
"THE 3RD GIFT: STORY, SONG & SPIRIT".
Please share this info with your friends, family, church and co-workers.
Thank you in advance for your support!
www.soundsofblackness.com

HEALING PLACES 2:

Jackson County continues to be an awfully nice place to have grown up in if you find yourseful in need of support.

Ahoy high school classmates - Dennis Fleetwood is alive and well, living in Ohio and called to be supportive but pointed out to me that I am not so very good at accepting support without trying to reciprocate. While he is correct, I did point out to him that by working hard at accepting all support offered I had gotten much better about that than I used to be... (note to self: maybe you should erase the reciprocating message about how to support the latest CD from Sounds of Blackness above. Or maybe you can just wait till Monday to work on your next set of improvements in that direction).

I continue to get messages from others in Jackson county, some recovering from their own set of medical work, offering support and if I need it, rides to chemo. Thanks guys, but at this point all but about 3 dates have already been chosen by local volunteers and there are additional local folks who have asked me to call if I need help. So while I really apprecaite your support and you cannot imagin how good it has felt to know you are in my corner when needed, for now I think it will not be necessary for anyone to drive 250 miles to Atlanta just to turn around and drive me back to Gainesville. But I love you all for offering.

And I continue to work my way through the items in the gift box from Sylva First Baptist that arrived with Ginny in time for my first chemo and to appreciate you all whenever I use any one of them.

HEALING PLACES 3:

To all who, anticipating this point in the chemo, sent those gifts of bubble bath, moisturinzing soaps, floating rubber duckies, skin rub, and so on - know that I am enjoying them all. When the TV gets old and the dizzy walking from room to room makes it too tiring to attempt anything else I fill the tub with hot water and just soak to my heart's content. Or at least until it becomes chilly and uncomfortable.

HEALING PLACES 4:

In addition to the phone call from Nathan and the Virginia Walkers (sorry Nathan, I heard it ringing but thought it was background noise in the cop show I was watching on TV until I found your voice mail Saturday morning), I am anticipating visits in the coming weeks from cousins from Arkansas and my sister from eastern Carolina. WARNING: the house may be a bit of a mess since I am not succeeding in keeping up with the laundry and dishes just now but...your company and support will be welcome.

HEALING PLACES 5:
Balsam would make a really excellent watching TV pillow if he did not (1) reek so supremely of hound dog and (2) have an unfortunately habit of sticking his face between your eyes and the TV while doing slurpy slobbery things to your neck now and then.

Things I have neglected and things I need now...

2010-01-27T21:11:00.008-05:00

It occurs to me that since I have been focusing on the hand knit hats, which have been arriving like rainfall, I have neglected some other things - such as

(1) the big purple Ginny-took-me-to-first-chemo-then-shopping hat;

(2) the little discrete grey Jackie-who-works-with-me-thinks-this-should-transfer-to-her-closet-when-I-have-hair-again hat;

(3) the Missy/Melissa-I-survived-chemo-and-so-will-you-this-is-my-good-luck Blue Macalester hat; and others.

Well if you look back at the early post with hats and scarfs on the folding doors photo you can pick most of these out. Others will be posted when I master the energy to make photos again.

And if you look carefully in the background of the photos already on board - you can identify the Elaine=and-Cami-thought-I-might-get-cold memorial gift comfort - which doesn't smell quite as nice as it did when Elaine dropped it off since Balsam, for reasons that escape me but probably are very clear to him, seems to find mouthing it and leaveing hound dog slobber behind a very desirable way to intermittently spend his time. Plott hounds are famous for their cold tracking noses - maybe it is a sign that he periodically gets lonely for Elaine. (really, he is not her type but I am not breaking that news to the poor little mountain dog.)

Meanwhile - people have been very generous about volunteering for driving - so maybe it is time to update my much smaller "what I need now" list:

Now what I need is a volunteer driver to drive me to and from Chemo on:

Monday February 22 - (short day - should be back to Atlanta by Noon)

Monday March 22 - long day - likely won't be back to Atlanta till late afternoon

Monday March 29 - short day

Monday April 5 - short day AND LAST DAY

All this assumes that there are no delays due to low white counts or whatever. And one of these days will drop off shortly as soon as I have time to check with my neighbor about exactly which day he wants to visit his buddies at Lake Lanier.

Meanwhile, I am sharing another photo of sunset at Water Rock Knob. Sunrise is just as nice, but not being a morning person I made it there less often and never with camera in hand.

Followed by several photos from a previous visit of the USNS COMFORT to Haiti in 2007 before the quake including the silloute of the Cathedral (now collapsed) from the approaching (or exiting) Port a Prince boat, the shoreline, the intact University Hospital, the USNS COMFORT anchored off shore at evening, and a sunset in happier times.

More hats

2010-01-26T22:08:00.013-05:00

So what arrived in the mail today (and a couple of days ago) but MORE HATS from Nancy B in NY and Gina Mac '74 in Seattle.

I am so set with hand knit hats that once I finally have hair again, I will be able to equip 75% of the bald chemo patients in Atlanta!!!

This brings the combined total to 1 primary-started-it-all from Rose Chen in MD;

1 hand-knit-but-not-by-her from Kathy in Minneapolis (thank goodness, we would have to re-align our whole concept our old friends if Kathy or Val took up knitting! they are so much more the hand-crafting-an-off-the-grid-cabin-in-the-Far-North types);

2 hand knit by ?Gina Mac'74 or some other hand in Seattle:

And 4 hand knit by Nancy the artist in NY.

By the way, I threw in a photo of Balsam cuddling up with the used-to-be-white-and-have-eyes-a-nose-and-stuffing seal that he fell in love with and adopted from Gina Mac '74 in Seattle's first CARE package. SEe if you can figure out which one it is. (HINT - photo contains a big black dog and a little flat filthy greyish thing).

Sleeps with Hats and Dogs...or tries to anyway

2010-01-19T23:42:00.013-05:00

Louisa attempts to sleep with dogs who, lacking both prehensile thumbs and, prehaps not unrealtedly, any finely tuned appreciation for the value of hand knit hats mostly attempt to eat them. But occasional switch to attempting to capture their favorite delicacy - Louisa snot (or occasionally, Louisa ear wax).

Note to Louisa: maybe the family portrait was not your best idea.

Note to Nancy, Rose and Kathy: thanks for the lovely Hand Knit Hat Collection which, now that the photo session is completely and forever over, will remain firmly outside the reach of the dogs

Note to Clara: maybe "Wrestles with Dogs" would be a better theme shirt for 2010. but it does give you a whole new appreciation for that guy who manages to publish all those photos of his Wimeranger dogs wearing all sorts of absurd costumes doesn't it?

It is raining Hats and Dogs...

2010-01-19T22:41:00.006-05:00

Arrive today by mail - special hand knit hats mailed by Nancy B from Pound Ridge NY on January 5 and given up for lost!

And ironically, inexplicable, and possibly significantly ALSO arrived today by mail - special hand knit hat mailed Jan 16 by Kathy Ogle from Bloomington, Minnesota. No, neither Kathy or Val have taken up knitting - this was came from a selection knit by volunteers for patients in Kathy's oncology clinc.

the Rose Chen hand knit hat collection expands and is rechristened into the Hand Knit Hat collection.

this calls for a special photo featuring the pink Christmas present "Sleeps with Dogs" shirt from Clara Chen plus me and the dogs posing as a family and each wearing one of the Hand Knit Hat collection. Hmmm. Getting that photo probably requires more energy than I have tonight. Plus a volunteer photographer and possibly 3 or 4 people to wrestle the dogs into submission. that posting will have to wait for another night.

But I did sucessfully complete the first Day of the Third cycle of 6 today, thanks to wonderful volunteer driver Leonora Weaver, and even made it back to work to send out the special report before coming home. I take that as a good sign. That and all the gifts in the mail.

One third done and counting ...

2010-01-14T18:40:00.003-05:00

Since I met with my doc for a check up today marking the official send of the second cycle, and thereby the one third done point in the chemo - it seems a good time to write an update. So how is it going?

(1) Chemo -

Going well. Main side effects are fatigue which has been quite tolerable so far, and a frequently bloody nose. That awful metallic/evergreen/kerosene taste has not been noticable this cycle and the rate at which my hair is falling out appears to have diminished - although it is hard to be sure since it is not nearly as noticable now that the hairs are a mere millimeter or so long.

That is what I told the doc. Here is what he told me.

The really bad fatigue tends to set in during cycles 4 and 5 (starts February 8) - so you have not really experiened fatigue yet. good you are trying to push yourself. Keep it up.
That awful taste comes and goes but by the end of the chemo most people complain that nothing tastes good. Hang in there.
The bloody nose is party due to the cold dry weather and much attributable to the avastin (the experimental drug).
The remaining hairs are probably in the dormant cycle. When they move back into the active growth cycle they, too, will all fall out.

So actually I am not being heroic or even doing a great job. I just have not hit the hard part yet. Oh well. I can always pretend.

(2) Other developments -

Went to the post office today where they assured me that indeed, the hand knit caps that Nancy B mailed from New York on Jan 4 should have arrived by now. I am not giving up hope that they are simply delayed in transit, but...it looks possibly grim.

Hosted West Texas Chapmans sister in law Debbie and niece Louisa M last weekend when they came out so Louisa could participate in auditions to become a professional ballerina. We are confident she was brilliant. Apparently some of her fellow auditioners recognized her as the poster girl for the ballet summer intensive she attended last summer - posters were hanging on the wall.

Nephew Judson spent Sat afternoon helping me hang pictures and things (well actually I was not doing a lot of help outside of just pointing out where to hang them) and stayed for dinner with his Texas cousins. The place looks better now but I seem to have more things that need to be hung than I have wall space. Still working on how to solve that problem.

Arkansas Walker cousins are now planning a trip out to visit and drive me to chem on Feb 15. That should be about the time my doc predicts I will learn what real fatigue is all about, but they assure me they are prepared to cope with it.

Balsam has adopted the little stuffed and formerly white seal that came in the CARE package from Gina in Seattle. He has carried it continually for a couple of weeks now and seems very fond of his baby. Although he does have an occasional tendency to pick it up by the back of the neck and shake it vigorously and repeatedly. Which may explain why on the multiple occasions that Jake has captured a possum that appeared to be dead if I made him put it down and come in, and checked back in an hour the 'dead" possum would ahve gotten up and run away. While on the only occasion that Balsam managed to capture a possum that, based on prior Jake experience I assumed to be playing dead, and I made him put it down and come inside - the next morning it was still lying on the ground doing a very convincing job of playing dead...

the little stuffed seal, in addition to changing from white to something closer to brown, has progressively lost a nose, an eye, and much of its stuffing. Balsam still seems devoted which perhaps proves that indeed, even for canines, love is blind and beauty is in the eye of the beholder.

that's about all the news that is fit to print. Thanks again for all your support.

33% DONE - and newest list of assistance needs and another photo of sunset at Water Rock Knob

2010-01-12T21:43:00.003-05:00

First - last Monday was the third week of cycle 2 - so I have officially finished 2 of 6 chemo cycles and am 33% DONE!

AS of now I have volunteer drivers for every Monday/chemo day through Feb 1 plus Feb 15 and March 15.

I still need volunteer drivers for the following Mondays:
Monday Feb 8 - day 1 of cycle 4, so will be a longer trip taking most of the day
Monday feb 22 - day 3 of cycle 4 - short day shoudl be back by noon
Monday March 1 - Day 1 of Cycle 5 - long trip taking most of day
Monday March 8 - short day
Monday march 22 Day 1 of cycle 6 - long trip taking most of the day
Monday March 19 - short day
Monday April 5 - short day

Yes, the Artic Blast chills the country...

2010-01-05T19:54:00.005-05:00

Forcing the dogs to spend long days confined inside while the outside temperature hover in the teens and twenties (for you Midwesterners thinking "so what?" this is the cultural equivalent of double digits below and usually does not stick around here for more than a day or 2 at a time), their outside water bowls remain frozen for days on end, and snow is predicted for the end of the week.

But Louisa continues to live the life of Riley - securely protected in her warm home, cuddling with the dogs in the evening and sleeping very soundly wrapped in all sorts of warm protection. As evidenced by this photos of Louisa ready for bed in the snappy new Christmasy PJs accessorized with that fancy red/gold bow and the snazzy Christmas bed socks - all thanks to items tucked into the pre-chemo care package by the chemo-nurse-Emily, Josh and Walker Buchannan family from Sylva. (And topped off by the hand knit by Rose Chen cap previously exhibited on this blog).

What you can't see is that before I wrapped myself in all this warm new sleeping gear, I had a wonderful mosituring bath followed by smearing all that moisturing stuff all over to protect against dry skin, again thanks to the lovely products tucked into the Sylva First Baptist care package by multiple people.

Thanks to you all. And to Ginny for ferrying them along. Real thank you notes are in the mail - or at least will be as soon as I finish just a couple more.

I am also spending time munching on the various edible goodies included but decided not to post a photo of that.

Sunset at Water Rock Knob

2010-01-04T20:48:00.002-05:00

What I need assistance with now

2010-01-01T09:53:00.002-05:00

I need someone to drive me to and from chemo on the following dates:

Monday Jan 25 - short day - Cycle 3 Day 8

Monday Feb 8 - long day - Cycle 4 Day 1
Monday Feb 15 - short day - Cycle 4 Day 8
Monday Feb22 - short day - Cycle 4 Day 15

Monday March 1 - long day - Cycle 5 Day 1
Monday March 8 - short day - Cycle 5 Day 8
Monday March 15 - short day - Cycle 5 Day 15

Monday March 22 - long day - Cycle 6 Day1
Monday March 29 - short day - Cycle 6 Day 8
Monday April 5 - short day - Cycle 6 Day 15

Time from my front door to Chemo office is approximately 40 minutes including time for me to treat for breakfast at McDonalds en route. Time for return trip is similar except treating for lunch requires stopping and takes longer.

Duration for chemo is usually about 2 hours on short days (back around noon) but 3-4 hours on long days (back mid-afternoon or such).

i very much appreciate everyone who has volunteered. I would much like to schedule these days in advance if possible even if it results in needing to cancel or change if things come up.

So far my white blood cell counts are holding up very well and there are no other indicators suggesting need for delay.

email to volunteer - louisae@comcast.net or LEC3@cdc.gov

Thanks.

What I needed now...

2009-12-30T21:45:00.001-05:00

Given how cold a bald head can get, I needed a small, soft, close to the head cap that I could wear just around the house when I did not want to mess with hats or tying fancy scarfs. Or maybe to bed if my head got cold.

So what arrived in the mail today? The perfect soft little cap hand knit by Clara's Momma, the Senior Dr. Chen from Bethesda. See photo below.

Cap knit by Clara's Momma

2009-12-30T21:42:00.001-05:00

Public Post- chemo hair - that bald head gets COLD

2009-12-30T20:03:00.002-05:00

Post-Chemo Hair public wardrobe

2009-12-30T20:02:00.002-05:00

Post Chemo Hair

2009-12-30T20:01:00.002-05:00

Cycle 1 is past tense.

2009-12-28T21:15:00.002-05:00

Cycle 2 began today.

My high school friend Elaine is visiting and drove me to Chemo. Despite her attempts to bribe Elizabeth, the chemo nurse, to again administer IV benadryl and ativan so she could make photos of me hanging upside down in the recliner chair, things went smoothly. I remember most of the day, had no problem finding my glasses, and did nothing (that I recall) to humiliate myself or entertain the rest of the room.

Fortunately for me that I am in the hands of a professional!

Elaine had to limit herself to laughing at me when I pulled out the "hand lotion" I had carried along, coated my hands with it and began to rub "body wash" into my hands in an attempt to moisturize them. It said "moisturizing" and "cocoa butter". Is it my fault I did not read the fine print part that said "Body wash" instead of "hand lotion"?

I guess it was. Still...

It did not help that my sister finally read the blog and called to ask if I was OK and chemo was going well or had we already gotten to that part yet where I hung upside down in the chair...and could she speak to Elaine please? (Cell phones - aren't they great?)

Thanks for your support, ladies. And whatever it was that you cooked up together while Martha was talking to Elaine on the cell, don't even THINK about putting it into motion. I really mean that.

This was the first day of the second 21 day cycle, so it went all day and I got it all. Taxol- my flower power drug; Carboplatin - my alkylating metal salt; and for the first time Avastin - the experimental drug that starves new cells of blood support, ensuring they will not survive. Plus an exam by the nurse practitioner.

The reference lab had once again lost the results for the labs that were drawn on Friday (this is my 4th treatment day and the second time they have lost the results - so far only a 50% success rate. If they do it again i will post the name of the company on this blog but for now I am going to give them a chance to get their act in shape) so I had to start the day by driving to the hospital to have the labs drawn and then had to wait for the results before we could start the chemo.

Elaine and I stopped for dinner on the way home and arrived at the house after dark to find an unexpected package at the door. A wonderful care package from Mac '74 Gina in Seattle who showed me how to blog by doing so about her own current chemo experience. Since Gina is a bit ahead of the learning curve on me with this "how to go through chemo" experience, she enclosed all that things she assures me I will need most, including a lot of bath items.

My favorite was the floating rubber duckie.

Elaine however is enamored with the handmade item called "Butte View Soap". I feel confident that in Washington State "Butte" is pronounced "Beaut" and this undoubtedly refers to the location where the soap was produced. Elaine, however, insists that "Butte" is pronounced a different way and seems to think that every time I use this cosmetic product it will oblige me to preform an act involving a car window, an unsuspecting innocent bystander and a moon... I am resisting Elaine's recommendations, but if I do comply and get into trouble I suppose that it may be helpful that Gina is a really smart lawyer.

Meanwhile, Elaine and I are finishing out the evening by using fake champagne (the non-alcoholic sparkling peach juice type) to toast the completion of the first cycle, the successful start of the first cycle, and the evidence that every thing is working as it should provided by the progressive shedding of my hair.

Tomorrow night we will close out by toasting to friendships old and new.

And if the job is not finished by the successful progression of natural events, Wednesday morning before she leaves we will visit Target, acquire some clippers for Elaine can shave my head before she boards her plane.

What, after all, are old friends for?

What I got for Christmas...

2009-12-27T19:34:00.002-05:00

an end to the suspense - will I lose my hair? yes, When? now.

Do I really look more like my Dad?

2009-12-24T09:01:00.001-05:00

Hair coming out by the handfuls in the shower this morning leads me to suspect what Santa will be bringing me this Christmas, beyond the lovely things you all have already deposited under my tree, will be a bald palate.

Lucky I invested in all those brights hats and scarfs...

What do I need now?

2009-12-22T20:47:00.004-05:00

Thanks to all of you who have so generously asked about what I need. At the moment, my needs are relatively small and simple.

Re: your concerns that I may spend the holidays alone:

I did decide this was not the year to try to travel far to spend the holiday with any of my siblings or distant friends. My energy and endurance from day to day and still too much of a day by day experiment to want to put myself in a position where I could not retreat however inconvenient it became for me or my hosts.

But I will not be spending the holiday alone.

Christmas Eve day (Dec 24) I have to drive to Gainesville GA for labs. That will be about a third of the way home (Sylva). So I plan to just drive on, spend the night with high school friend Ginny and take in the Candles and Carols service at First Baptist, the Coward open house, and the tail end of the Ginny Walker Middleton & children and grandchildren Christmas Eve dinner - or at least as much of this as my energy will sustain. Over the decade that I worked Christmas at cherokee hospital while Dad was still alive this pretty much became my holiday tradition anyway.

I have an open invitation to drop in and visit a friend from Atlanta and her mother at her mothers new place in Tococca, Ga on the way to or from Sylva, and if my energy permits will visit.

I have another invitation to a drop in brunch on Christmas day and a family dinner later on Christmas Day in Atlanta, both from people I work with.

And since she will spend Christmas day accompanying one of her oldest ATlanta friends who shares her assisted living home to a family dinner, I will spend some time visiting with my Aunt Marian (mom's college room mate and now a 91 yo retired dentist in Atlanta) on Sat Dec 26.

On Dec 27 my high school friend Elaine arrives to take me to Chemo on monday Dec 28, and just to visit through Dec 30.

So I am booked. Possibly overbooked for my energy level. this is terrific as I rarely have even half as many options. My social life was never half this busy when I was healthy. Another side benefit of this disease.

So thank you all for your concern and kind thoughts but don't worry, I will not be spending the holidays alone.

Re: What I need after the holidays:

Mainly I need transportation to and from chemo on every Monday between Feb 1 and about mid-April.

This requires departing my house at about 8 AM on Monday and driving to Gainesville, GA, a drive that is just under 40 minutes from the time we leave my house until we are sitting in the doctor office parking lot, even taking into account the time required to drive through McDonalds and pick up the breakfast I always buy for myself and my chaffeur en route. Time required for chemo is variable, but last Monday I was finished by 11 AM and we were back by noon, even accounting for the time required to stop at a Cracker Barrel and buy myself and my transporter lunch. Other Mondays have taken longer but still had us back by mid-afternoon.

The Mondays starting Dec 7 through Jan 18 are already booked with confirmed volunteers.

Any dates after that can be claimed.

Just send me an email with your preference and I will confirm and pencil you in on my calendar.

Re: concerns that I may not be eating well enough

Never fear. My freezer is still stuffed with excellent home cooked healthy meals that cousin Jane and sister-in-law Debbie left behind. All I have to do is pull them out and thaw in the microwave.

And the junk food gap has been adequately filled by my considerate if less domestic friends here. In fact, this past Monday after a streak of Christmas chocolates (that did not make it to Christmas) and other treats provided by friends, I discovered at weigh in that I am possibly the only chemo patient in the history of chemotherapy to actually gain weight while receiving chemo.

Since the primary side benefit of this disease has been the weight loss that accompaied surgery and chemo, all I can ask is - cut it out. Please don't make it any easier for me to fall back into my old sweets habit. (maybe I should not blame my friends for my absence of will power and self-control, but why not? I am taking it easy on myself for the time being.)

Again, thank you all for all of your support.

Louisa

Aunt Rita who assured me it was 7 PM in Arkansas (foreground) with her sister Alice at Aunt Rita's 85th birthday party

2009-12-21T20:56:00.000-05:00

So how am I doing? Part 2 on Dec 21, 2009

2009-12-21T19:46:00.000-05:00

All in all I am doing really well. Truly.

Those old horror stories about chemo and nausea? They have pretty much solved that one by developing better meds to control / prevent nausea. For myself, for 48 - 72 hours after I get chemo I take a medication called Ondansetron HCL (also known as Zofran) every 12 hours starting about 12 hours after I presented for chemo and got my pre-meds. (Pre-meds are medications given before chemo to prepare you for the chemo itself).

That means tonight I will take the first dose at about 9 PM. Then I will take it every 12 hours through Tues and Wed and probably, depending on how I feel, on Thursday morning.

I also have another medication that prevents nausea called Prochlorperazine (also known as Compazine) that I can take every 4-6 hours when I need it.

I take the Zofran every 12 hours religiously. I take the Compazine only if (but immediately when) I get even a hint that I may be vulnerable to nausea. This means that I take the Zofran every 12 hours at 9 AM and 9 PM, and for the first day or two after chemo I take the Compazine usually at what I think of as change of shift for the 12 hour pill. By about 7-8 PM its effect is starting to wear off. But I am not supposed to take it again for another hour or 2. So I take compazine instead, and it eliminates any nausea during the period of time when the prior Zofran dose is wearing off or the new Zofran dose is building up its effect. All in all it works very well.

The only problem was one morning when I made the mistake of taking my pills before I put my glasses on. No problem taking the Zofran. But when I intended to take the Compazine, I mistakenly took a pain pill (oxycodone) instead. Dumb mistake, and potentially really dangerous.

In this case it was not so bad. When I vomited I immediately suspected my mistake. It was easy to correct that part by taking the Compazine. But I could not remove the effect of the pain med and had to stay home from work because it was not safe to drive.

I am no longer allowed to take meds unless I have my glasses on. A really dumb and dangerous mistake that I do not intend to repeat.

So put aside those visions of having to stop by the side of the road to vomit outside the car. That is historic, and really no part of my chemo experience. Which is terrific to date.

Some of this maybe because of my meds. I find that the nausea was stronger after the first dose of the first cycle (day 1 Dec 7 when I got flower power Taxol plus alkylating metal salt Carboplatin) than it was after the second dose (day 15 Dec 14 when I got only flower Power Taxol alone) or the third dose (day 21 dEc 20 [today] when I again got Taxol alone).

My primary symptoms is fatigue, which varies from day to day and hour to hour and is a bit unpredictable to me. While I like to go into work and try to do so on Tues - Thurs as long as possible - the irony is that I am actually probably more productive when I work from home because I can adjust my work schedule to accomodate the fatigue. (work a couple of hours, nap for a while, then work a couple of hours again, then nap for a while).

Since I was producing this special report for months before I had surgery and chemo, we know it is a reasonable expectation that updating and distributing it takes about 2 8 hour working days. But I produce it over more than 2 days - basically as soon as I distribute one I make a new draft for the next one and update it a little bit almost every day, including working on the weekend since I distribute it at the beginning of the week. But however many days I work on it, it all counts for 2 work days of production. The third work day is split between various short term tasks - consulting for PDU, performing a peer review for the medical literature, whatever needs to be done. This works pretty well so far and I am able to take 2 days medical leave a week (mondays for chemo and fridays for lab) and work the other 3 days.

As the chemo progresses I understand that the fatigue may get worse. As that happens I may need to switch to 3 days of medical leave a week and only 2 days of work. And I may need to work more from home either because of the fatigue or because my blood counts go low and there is too much risk of infection if I go in and work with the crowd.

I am lucky that my employer and the terms of my employment will accomodate this. Any CDCers who are following this blog, you might think about whether you have tasks that I could do for you as time goes on to make that 3rd day productive, or if the H1N1 flu response declines to a level that makes my special report no longer of value, or reduces the time needed to produce it to less than 2 working days.

I do want to carry my share of the load as much as possible. it is good for me and hopefully also good for the agency.

But so the chemo itself has not to date been a major problem. However, I also get pre-meds - medications given before the chemo to prevent problems with the chemo. Ironically, these drugs, intended to protect me, have been a problem.

Day 1 cycle 1 I was pretty dehydrated when I arrived at the office. I got a large dose of steroids but began to have an allergic like reaction to the Taxol, so I was also given benadryl by vein. That made me pretty loopy and caused me to sleep most of the time. My dear high school friend RN Ginny had accompanied me, and I understand she took the time while I was dozing to discuss our high school days with Elizabeth, the wonderful chemo nurse. All I can say is, other high school RN Friend Elaine will accompany me to chemo on Dec 28 and can use that time to clear her name and improve her reputation... (Actually it probably is true that Ginny and I were hopeless do-gooders and Elaine always got us into trouble (minor trouble)- and into fun ... but since the adult Elaine has a reputation to maintain....) (Actually it occurs to me, maybe it is Ginny and I who should be worried about correcting our reputation as hopelessly dull do-gooders....Elaine frankly is probably not going to be a great deal of assistance with that, but I will work on it. After all, adult Ginny and I also have reputations to maintain).
Since I hardly slept for 2 days after chemo, I deduce that steroids make me hyper.

Apparently Elizabeth instructed me to take Zyrtec daily in advance of my next chemo to prevent allergic reactions. Unfortunately I had no memory of that and so did not.

So when I arrived for Day 8 cycle 2 dose 2, i got premeds of steroids but also, as a precaution, a large dose of IV benadryl - an antihistamine meant to combate allergic reactions. Shortly thereafter I was unable to keep still and had to keep moving my legs. I recall shaking them out a bit and frequently shifting positions. But the nurse tells me I was standing up, shaking them out, and other things that were generally disruptive.

So I got a dose of IV Ativan - a drug related to valium. the last thing I remember is calling Karla the playwrite who drove me to chemo that day to tell her we were a little behind schedule and asking Elizabeth if I could have some additional Ativan since my legs were better but still not quiet. That was about 1 PM on Dec 14.

The next thing I remember is being awakened at 8 o'clock by a phone call from Aunt Rita from Arkansas. I was home in bed in my PJs and underwear. This was puzzling because normally I (and most of the world) do not wear underwear under PJs. One dog was inside but the other was outside. This was puzzling because they usually hang together. My glasses were missing. And I tried to use environmental clues to tell me whether it was 8 AM (in which case I needed to be getting to work and preparing to take my Zofran and compazine). Or if it was 8 PM in which case I only needed to take the meds. Eventually I gave up and had to ask Aunt Rita "What time is it in Arkansas right now? YEs, but is that AM or PM?"

It was 8 PM. Even now, a week later, I am completely amnestic (have absolutely no memories) for the time between 1 PM and 8 PM on Dec 15. And I still have not found my glasses.

But I know a bit about what happened, because other people have filled it in for me. When I called the clinic to ask about my glasses the receptionist started laughing and said "You were not entirely with it when you left last Monday", a clue that whatever was going on was more entertaining than annoying.

Elizabeth the chemo nurse responded tactfully to my inquiries, assuring me that I did have a, uh, bit of a reaction to the meds but was able to leave under my own power with assistance from playwright Karla, but no, she did not find my glassses there. And she reminded me to get Zyrtec and take it religiously in the evening in advance prep for next chemo.

Karla was also tactful. She assured me that I was able to get into the house, the PJs and the bed under my own power. No, it had not been necessary to call her husband or the neighbors to sling me over a shoulder and haul me inside. She also assures me that while I was rather incoherent the entire way home, I was consistently polite and solicitous of her well being. She assures me that I did not drool on my shirt (or anything else) and rarely outright babbled, ... although it was frequently rather difficult to understand what I was saying when I attempted to be politely solicitous. She once stated that she did not understand me and apparently I assured her that was OK, I did not understand myself.

She also has no idea where my glasses are, but noticed they were missing at some point on the ride home. I suspect they are lying somewhere in the grass outside the clinic.

But she did volunteer to drive me again on Jan 4. From this I deduce that either (1) it was not all that bad; (2) it was every bit that bad but funnier than anything else recently encountered; (3) it provided great subject matter for her next play; (4) since her husband is a brilliant physicist who specializes in chaos theory, it was useful insight into the matter with which he occupies his professional days; or (5) Karla is a very very nice person. Well, we already knew that part 5, huh?

The most revealing information came from people who had no ongoing responsibility for me and therefore felt no need to be tactful. When I arrived for chemo today an older woman was there with her daughter. She looked very very down cast, as she had just learned that she could not get chemo that day because her white counts were too low. She seemed very discouraged and seemed to fear that this meant she had done something wrong or would have a poorer outcome. I felt badly and tried to cheer her up by assuring her that every one's counts go down at some point or another, but it did not seem to really help.

Then I asked Elizabeth about last week and my pre-meds. The other patient's face brightened up and she said "Was that you? Are you the one who was lying with your head down here and your feet up there?"

Apparently at some point I decided that the recliner chairs were improperly positioned and took it upon my self to reverse the pull of gravity. Apparently at some point I also decided the window shades needed improvement and took it upon myself to wander over and readjust them. Apparently I was so bad that Elizabeth, the chemo nurse, had had to solicit the assistance of all the other Chemo patients to keep an eye on me and let her know when I needed intervention.

Apparently it is not always an advantage to be a self-starter.

And apparently it was very very entertaining, deduced from the way the other patient's face brightened up and she could not help laughing when she described the previous week to her daughter. At least she left feeling better about how she was handling her own Chemo. Low counts? That could happen to anyone. Rowdy drunk sitting upside down in the recliner chemo chair and requiring the assitance of all the chemo patients combined to remain contained? Hey, she had not stooped that low yet.

How embarassing - apparently I am a cheap but entertaining drunk.

Well, at least I brightened someone else's day. And made her feel more competent about how she was handling her own chemo experience.

Today (dose 3 cycle 1) between the daily pre-treatment with Zyrtec and an additional oral dose of antihistamine we were able to skip the IV benadryl and the chemo when smoothly and without complications. I remained upright in my chair and left the shades alone. In fact I tried to remain as inconspicuous as possible, which possible did not benefit the other patients as they were left with only magazines and TV for entertainment. I was perfectly pleased to remain anonymous and to entertain nobody.

Well, at least it is no mystery how I lost my glasses.

And that settles the question of whether, as time goes on, I will be able to drive myself to and from Chemo. To possibly, from never.

Jake and Balsam's cousins - note marked family resemblance

2009-12-20T21:32:00.000-05:00

Somewhat faithful Bear Hound Balsam ("W VA Walker Balsam") failing to cooperate with the indignity of posing for Christmas photos 2008

2009-12-20T21:28:00.000-05:00

Faithful dog Jacob P Dawg Chapman, patiently suffering the indignity of being required to pose for Christmas photos in 2008

2009-12-20T21:25:00.000-05:00

About Chemo

2009-12-20T19:47:00.000-05:00

So people keep asking me about my chemo (mostly medical types but also normal people) so this entry is intended to be a primer.

The clinical trial in which I am participating, GOG-252, has 3 arms. The first Arm is mine, and uses only standard intravenous (IV) therapy. The other 2 arms also use standard intraperitoneal (IP) therapy.

In Arm 1 I will receive 6 cycles of standard chemotherapy, each cycle 21 days (3 weeks) long.

Each Monday of the cycle (days 1, 8, and 15 which for me on my first cycle are Dec 7, Dec 14, and Dec 21 (tomorrow) I get a standard drug called Taxol (generic name Paclitaxel, also called Onxal) at a dose of 80 mg/m2 each Monday - total dose for the cycle is 240 mg/m2, which is actually a bit more than standard therapy. but since it is split into 3 doses (standard is a smaller dose but all given on the first Monday) there are fewer side effects.

Taxol belongs to a class of drugs called "plant alkaloids". As you probably guessed, plant alkaloid drugs are made from plants. Closely related drugs, the "vinca alkaloids" are made from the periwinkle plant. Since periwinkle blue is my favorite color, I like that idea. However, since they don't let you select your chemotherapy based on color preference, I am not taking one of those. Taxol is in a category of plant alkaloids called Taxanes, which are made from the bark of the Pacific Yew tree. Which actually still sounds pretty cool - rather hippie-oid I think. So I think of Taxol as my "flower power" drug and am trying to view this whole chemo experience as a second change at experiencing the 60's, since I missed important parts of that whole era the first time around by spending most of my time inside studying while every one else was outside, getting high, tuning in, and ... whatever - having fun and aging their skin.

Taxol and other taxane drugs work by interfering with the ability of microtubule structures within the cell to develop and function properly. Cancer is a problem because cancer cells lose the normal "brakes" on reproduction and just replicate themselves out of all proportion and reason, using up space and resources originally intended for other normal cells and ultimately just taking over, and killing off, the host. Not very considerate of them if you think about it. Microtubles (scientific name for lots of tiny little tubes) get generated and used as an important part of a cell's ability to divide and replicate itself. So by inhibiting (interferring with) these tiny little tubes that are inside cells and used to make new cells, Taxol interferes with the cancer cell's ability to reproduce itself and ultimately leads to cell death. Too bad for the little cell but actually very very good for me.

On the first Monday of the cycle (Day 1) I also get a second standard drug called Carboplatin (trade name Paraplatin)at a dose of 6 units IV (which is the standard dose).

Carboplatin belongs to a class of drugs alled "alkylating agents", also referred to as "cytotoxic" agents ("cyto" = scientific word for living cell substance and "toxic" scientifically refers to, well just what you would expect, toxicity or poison, so this is a substance the poisons or is toxic to living cells. or antineoplastic agents. (Again, "anti" is scientific short hand for "against" and "neo" is science talk for "new" and "plastic" is sort of science talk for living stuff so "antineoplastic" is a scientific phrase meaning this is stuff that works against new living stuff).

Carboplatin is an alkylating agent (antineoplastic or cytotoxic agent) that has most of its effect during the resting phase of a cell's life. Carboplatin is in a family of alkylating agents called "Metal Salts", so while i am unclear on exactly where they come from, I don't think it is from flowers. I suspect these are cooked up by chemists in artificial environments like labs. No flower power here. In fact, another group of alkylating agents are the mustard gas derivatives. Remember the terrible Gas attacks that troops experiences in the trenches of Europe during WW I? Or that Kurds in northern Iraq experienced under the command of Saddam Hussain's henchman "Chemical Ali"? Those gas attacks used Mustard gases. So that old gas mask up in great-granddad's attic was intended to protect him from things now being flung at cancer cells in a more targeted way.

Since Carboplatin has most of its effect during the resting phase of a cell's life, this means that while the first drug - my flower power drug Taxol, attacks cancer cells while they are trying to make additional new cancer cells by messing up the tiny little tublules inside the cell that the cells needs to reproduce, this drug, Carboplatin, works while the cell is taking a break and just resting. So the poor little cancer cells can hardly get a break since this combination delivers a one-two punch whether they are working to reproduce or just sitting around trying to rest and recuperate. (Actually I don't feel very sorry for the poor little old cancer cells and honestly, I don't really think you should either. If they were not misbehaving in the first place we would not be throwing alkylating agents and plant alkaloids at them in the first place.)

So the drill is this: Cycle 1 day 1 (Monday Dec 7) I get a big dose of flower power Taxol that attacks cancer cells while they are trying to reproduce by messing up all the tiny little tubules within the cells, followed by a big dose of my Alkylating agent/metal salt (closely related to that Mustard Gas agent floating over the WW I trenches) that attacks cancer cells when they sit down to rest.

A week later (Cycle 1 Day 8 - Monday Dec 14) I got another dose of flower power Taxol. And a week later yet (Cycle 1 Day 15 which is tomorrow Monday Dec 21) I get yet another dose of flower power Taxol. Which should make it pretty inconvenient for cancer cells trying to make more cancer cells.

Then the next week we start a new cycle with flower power Taxol + alkylating metal salt Carboplatin (Cycle 2 Day 1 monday Dec 28) to interfere with reproduction and resting, followed by 2 weeks of flower power Taxol alone (Monday Jan 4, and Monday Jan 11) to keep messing with those tiny little tubes within the cells.

Why, you may ask, do I get 3 doses that interfere with tiny tubules and cell reproduction for every 1 cycle that messes with the cell's ability to rest? Well, actually I have no idea. But I would guess it is because cancer cells spend a lot more time reproducing more cancer cells than they spend just sitting around trying to rest.

Any way, this whole 3 week cycle will repeat itself 6 times (Cycle 1 = Dec 7, 14, 21; Cycle 2 = Dec 28, Jan 4 & 11; Cycle 3 = Jan 18, 25, & Feb 1; Cycle 4 = Feb 8, 15, 22; Cycle 5 = March 1, 8, & 15; Cycle 6 = March 22, 29, & April 5). That assumes, of course, that each cycle goes off on schedule and does not have to be delayed.

Why would a cycle have to be delayed?

Well, these drugs are not as smart as we would like them to be. So they do a good job of interfering with cancer cells that are reproducing, but they also do a pretty good job of interfering with normal cells that are reproducing. What cells are those? Hair cells obviously - that is why most chemo patient get bald at some point or other. Blood cells also, which is usually the limiting factor. If too many of my white blood cells get knocked out, they may have to delay a cycle to allow them to recuperate a bit.

But for now I am assuming that I will complete the standard part of this chemo therapy regimen about the middle of April.

Now there is a third drug in this trial - Avastin. That is the experimental part that makes it a clinical trial.

All the women in the clinical trial will get an experimental drug, Bevacizuma, also known as Avastin, starting on the first day of the second cycle (for me, Monday Dec 28). Thereafter we will get that same drug on the first day of each 21 day cycle. However, while the regular chemotherapy ends with a last dose on April 5 (assuming no delays), the Avastin will continue on day 1 of 21 cycles, which is day 1 of cycles 2 - 22. This means after I quit getting the standard chemo on April 5, 2010, I will keep getting this experimental drug on the first day of each 21 day cycle for a total of 336 more days, which is nearly a year after I finish the standard chemotherapy. So I won't be a totally free woman again until sometime in the late spring or early summer of 2011. (which sounds like an awfully long time).

What is this Avastin? Avastin is a monoclonal antibody that is an "antiangiogenesis" agent. Antibodies are things that our own white blood cells produce in response to infections. When we get sick and afterward are Immune to that disease, that immunity is in part because our healthy white blood cells made antibodies that attack the same infection if they see it again. When we get vaccines and are protected by them, that is in part because our white blood cells make antibodies that attack the infection the vaccine was designed to protect us against.

So how does this work with cancer? Well normal natural antibodies that we produce for our protection are multiclonal - which is scientific talk for many versions ("multi" = many, "clonal" is like a family line - so multiclonal = many types, but monoclonal = 1 type only (mono = 1 or all alike).

Normal healthy antibodies that we produce attach to infections and mark them for destruction by our own immune systems.

This monoclonal antibody is targeted specifically to attach only to a protein produced by a cell (cytokine) called human vascular endothelial growth factor (VEGF). VEGF is produced by cells and leads to the development of new blood vessel formation (angiogenesis, "angio" = blood vessels and "genesis" means "In the beginning..." just like in the Bible, so angiogenesis is the beginning of blood vessels. Blood vessels bring food to the cells and take wastes away. So without the ability to form blood vessels new cells will starve while sitting there stewing in a cesspool of their own wastes.

Avastin is a totally new approach to cancer treatment that was approved by the FDA on the fast track a few years ago because it was proving so effective against colon and prostrate cancer, and it has also been approved for use with breast cancer although it is not clear that it is as effective there.

We don't know how or whether it will work for ovarian cancer, but it seems worth while to try it. And at the end of this research experiment, at worse doctor's will know a little more about how to treat cancer patients best. And at best I may get some benefit from having this additional line of attack on my cancer cells now.

Now in addition to the chemotherapy drugs, which are given to make things inconvenient for the cancer cells, I get other drugs that are intended to protect me from the chemotherapy drugs.

So since lots of people have allergic reactions to the Taxol, and I myself had a mild one the first time I went for chemo, before I get Taxol (my flower power drug) I get large doses of steroids (a cousin of the drugs athletes take to beef up faster and that lots of people with asthma take when they have a serious asthma attack) and of benadryl (an antihistamine, which many people take for allergies routinely) and sometimes of ativan. These drugs make me a bit manic, very loopy, and after the second dose of chemo last Monday left me amnesia (memory loss) from about 1 pm until about 8 pm that night. Wierd and spooky.

So while the chemotherapy drugs are not so bad, the medications i get first make me a menace on the highway. As a result my primary support need now is for someone to drive me to and from chemo every Monday. While I might do very well getting there on my own, I would clearly be in no condition to drive myself home, not because I am sick but because I am effectively drunk.

OK - a long discourse. Enough for now.

Again, thank you all for your support.

Louisa

2009-12-17T22:00:00.000-05:00

So How Am I Doing?

2009-12-17T21:51:00.000-05:00

How Am I Doing?

So far going well and I love the fringe benefits of this disease. (1) without any particular effort of will power on my part I have lost almost 30 pounds since pre surgery. (2) by starting chemo on Dec 7, I simultaneously turned 57 while getting medically reclassified as “Young and healthY” (...”young and healthy people like you have a better outcome than the overall statistics of 20-40% 5 yr survival”...)

So far going well, but I have not yet had to cope with losing my hair or gaining oral and GI ulcers. Still I can’t complain. I feel amazingly well, I have wonderful insurance (Tricare) and a generous medical leave policy, and have been almost overwhelmed by the support I have received from family and friends both nearby and far flung.

While I would not recommend an exploratory lap or chemo for your next vacation, I have to say that compared to what I was expecting based on what I observed during my residency more than 20 years ago, this is a whole new world.

I undoubtedly benefited from an excellent surgeon and surgical team, including the post-surgery nursing staff at Emory. But I have also benefited from advances in surgery and management of peri-surgical complications including pain. Thanks to an epidural and excellent pain management I really was minimally uncomfortable following surgery. Initial efforts to get up and walk were not particularly fun, but I can honestly say that gas pains were the worse thing.

They now clamp these pneumatic devices on your ankles that alternate compression massage of your calves post op – which was WONDERFUl. I found myself pushing the assitance button in the middle of the night and saying things like “Could someone please remove the spa treatments from my legs and assist me to the rest room?” I recognize the intent was to decrease the liklihodd of a life threatening blood clot in my legs, but the effect was really luxurious and relaxing.

And these days you are immediately issued post op an elastic abdominal binder similar to the ones that men who do heavy lifting on the job wear to protect their backs. This terrifically decreases the stress on the abdominal muscles in the post-op era and made it much easier and more comfortable to move, get up, walk and so on.

And of course I benefited massively from the assistance of cousin Jane and Sister-in-law Debbie for the first couple of weeks after surgery.

As for chemo – the old days of nausea and vomiting are apparently history. For me at least, the new meds are remarkable. The only time I had any problem with nausea was when I made the mistake of taking my meds before I put my glasses on and, as a result, mixed up my compazine and my oxycodon. That resulted in a little vomiting and a day of napping instead of work, since it was easy to reverse the nausea with meds once the error was recognized, but removing the effect of the already ingested narcotic was not so simple. A really dumb and dangerous mistake. I now have firm rule that I am only allowed to take medication when I have glasses on.

The nausea is controlle with a pill I take every 12 hours and another shorter acting one that I take when needed (compazine). For the first 3 days after chemo as long as I religiously take the 12 hour pill on time I have minimal awareness of nausea. For the first 2 days I usually take the short acting compazine one at what I think of as “Shift change” (pop it an hour or 2 before the next dose of the 12 hour pill is due) and that suppresses any discomfort as the longer acting pill is wearing off.

Really it is pretty amazing how well these medications work these days. I feel very blessed.

My energy is variable. To date I have been able to take medical leave on Mondays (for chemo) and Fridays (for lab work) but work either from CDC or from home the other 3 days of the week. I admit I am not as productive as I usually am, but I have been able to consistently develop and distribute the weekly special report on H1N1 response that I have produced since last spring, and do a bit of additional consulting with the Plans Decision Unit, peer review for the medical literature and other odds and ends. I anticipate this may decline as time goes on, but for now it is working well for me.

So put away those visions of me languishing alone and ill at home. I am getting out several days a week, accomplishing at least a little bit at work, and generally except for fatigue feeling really quite well.

But thank you very much for your concern. I can’t say often enough how very appreciative I am of the incredible support you all have provided.

I intended to provide an update on chemo, but it seemed more important to address these concerns that keep coming up. And my energy is a bit low right now. So I am deferring the chemo update for another day.

LouisaECChemoDiary

2009-12-13T20:25:00.000-05:00

For the record, it appears I have the most supportive circle of family and friends in the world. You all have been amazingly supportive over the past month. In return I have been less effective in communicating back. Let me start by stating clearly how deeply touched and supported I have been by your communications. Never doubt that it makes a remarkable difference. I really really really appreciate every thing you all have done to support and help me.

I started this blog because I am finding it impossible to maintain adequate communication with every one. So at the suggestion of several friends and relatives, I will be periodically updating this blog on my status as I move through this medical journey. You all are welcome to check in as frequently or infrequently as suits your interest.

Just to get everyone to the same page - this photo of me and my cousin Nathan (well, to be specific, one of my several cousins "Nathan", but at this point I think the most senior one) dates from last March 2009 when we had a rather large family reunion in Wilmington, NC to celebrate the 85th birthday of my Aunt Rita, more than a year after she finished taking chemo for ovarian cancer.

That is the same Aunt Rita who called from her assisted living home in Arkansas the night before my surgery to assure me that if they were needed she and cousin Robbie would come immediately to take care of me. (Well, one of my several cousins "Robert" but at this point, I think, the most senior one).

Digression:

The Chapmans / Walkers / Hyatts / all suffer from that southern British-Isles-descent syndrome where at some point early in human history each family was issued only 3 or 4 male first names that they have to keep shuffeling about in combination with maternal maiden names to cover male offspring for generation after generation. Think I exaggerate? Ask me how many cousins "James" I have (on both sides of the family). Ask me how many men on the Chapman side carry "Davis" as their first or second name. Ask me how many decendents of the Robert Walker who landed with the first ship in the Mass Bay Colony are currently named Robert? (Actually I have no idea, but at least 3 from the western North Carolina branch that I know of). Ask me how many "Judsons" were hanging out in the NC/GA portions of the family as of March 2006 (at least 5 that I can immediately count). Ask me the largest number of roman numerals officially carried after the last name of a contemporary male cousin (V - I think). Ask me how many...well that is enough for now. Back to the main point.

Thanks for all your love and support!

In early October 2009 my doctor evaluated me for swelling of my right leg, assumed to be due to long hours sitting working on H1N1 Flu response and long standing venous insufficiency in that leg (Varicose veins for the non-medical). Tests showed no evidence of a blood clot, so I was cleared to depart for a long planned vacation as long as I took appropriate precautions.

I had a wonderful trip to Italy and Kosovo between Oct 11-22, but returned a couple of days early because the swelling continued and worsened. To make a long story short, this time the evaluation still showed no evidence of blood clots, but did identify masses in my pelvis that were compressing the right iliac and common iliac veins. (Big veins in the belly that allow blood to return from the legs).

October 30 I underwent major abdominal surgery (exploratory lap) that identified ovarian cancer stage III C ( meaning a large mass on each ovary,a few implants on the colon and in the pelvis and cancer cells in 3 of 4 lymph nodes). (For you medical types, Papillary Serrous adenocarcinoma, high grade). The good news is, the surgeon was very very confident that he was able to debulk (remove) all tumor, and there was no ascites (fluid in the belly). These make it more likely that I will have a good response to chemotherapy.

Recovery from surgery was easier than I anticipated (still would not recommend it for fun) in no small part due to the decisions by my cousin Jane and sister-in-law Debbie to come stay with me for the first couple of weeks after surgery - during which time in addition to waiting on me hand and foot they did a lot to improve the organization of my home.

Next major decision was what to do about chemotherapy - with options being standard intravenous (IV) chemo (by vein), standard intraperitoneal (IP) chemo (put directly into my belly) or join an investigational trial. After much helpful consultation from the Emory surgeon and oncologist (Dr. Ira Horowitz and Dr. Joan Cain - both excellent and recommended) and with colleagues who are oncologists (N=1) or who know and consulted 1 or more oncologists (N=many many many) in the end I decided to join a clinical trial.

The trial, GOG-252 (stands for Gynecological Oncology Group), randomized the women who participate in it between 3 arms. Regardless of which arm they are in, they will get some variation on standard therapy. One arm is IV therapy, and the other 2 are IP therapy. All 3 arms are tweeked a little bit from the usual standard in ways that evidence suggests or there is excellent reason to believe will be improvements (fewer bad effects, more benefit). In addition, all women enrolled in the trial will get the new drug Avastin in addition to standard therapy. This drug inhibits the ability for cells to develop new blood supplies (inhibits angiogenesis). Since the blood supply to a cell provides nutrition, this drug basically starves new cells. Since cancer involves lots of new cells, it has been remarkably effective in some cancers (colon, prostrate). There is no real experience with ovarian cancer, which is why it is a clinical trial. But evidence to date makes many people hopeful that it will offer real benefit and suggests that is it unlikely to cause harm.

So in other words, if you enroll in the trial you get a variant of standard therapy, so you lose nothing. But in addition you get an additional new drug that may or may not help. At best it helps and you get a much better outcome. At worse it does not help and by participating in the trial you contribute to the development of knowledge that allows doctors to be smarter in how they treat patients with similar problems in the future. Well, OK, the real worse is that you have an adverse reaction to the drug and something bad happens because you took the experimental drug, while you gain no benefit. While that is possible, I think the liklihood that it will happen is low enough that I am willing to take the risk.

So I enrolled in clinical trial GOG-252, was randomized to arm 1 (standard IV therapy plus Avastin) and began chemo therapy on December 7, 2009 - my 57th birthday.

Tomorrow I go for my second day of chemo. Since I am a little tired tonight, I will leave the update on the first and second chemos until after I get home tomorrow. Or possibly one night later next week.

Again, thanks for your wonderful support.