Here we go again

I am reactivating this blog because, as most of you know, I am going back to surgery on Tuesday Oct 27. I have been most fortunate and done unbelievably well for about 5 years, but I have a little cyst that has been slowly growing in my pelvic regions for about a year now. The only way to figure out if it amounts to some that sends me back to chemo or amounts to nothing is to go in and take it out and look. To be perfectly honest the idea of surgery is not nearly as exciting and fun the second time around. So that is what will happen. I know I have done a lousy and erratic job of updating my friends about this upcoming event, so this may take some of you by surprise. Thanks for supporting me anyway. This time the surgery will be at NE GA Medical Center in Gainesville, GA so I can stay with the same medical group that handled my chemo and has followed me along. A friend (Jessie) will take me up Monday night and stay until I am out from under anesthesia. Another friend who is retired (Jan) will come to visit on Wednesday. My cousins (Jane and Bruce) will arrive Thursday and bring me home and stay until I can operate on my own. So thanks for your concern - I am good and I have the support I need. Hope you are well. Louisa

3.5 year post chemo follow up

Today I had my 6 month followup, which marks 3 and a half years since the end of standard chemotherapy. Because I packed the CT and exam into the same day, the official CT reading was not back yet. But reviewing it with my doc, the usual ambiguities apply but the exam was good. Last CA-125 was 2 months ago and still hanging at 5.6 (anything below about 30 is within normal limits). Next CT and exam in two months - which puts them in December in between my birthday and Christmas. What a busy month!

April 11, 2013 - last every 3 month follow up

Today I again had a CT scan, physical exam and CA-125 blood test as part of my last routinely schedule every 3 month follow up exam. This marks 3 years from the end of the platinum (routine) chemotherapy, and 2 years since the end of the investigational Avastin therapy. All results were clean! CT and exam unchanged, CA-125 remains 5!!!! This means my follow up drops to half - an exam, blood test and CT every 6 months for the next two years. I still have my port, which needs to be flushed every month or, when it fails to flush easily like today, every 2 weeks. But if that becomes an inconvenience or limiting for a job, the doc says we can consider taking it out. (probably unless there are problems it would stay in place for another 2 years or more). So that is all great news! And means that now I have to get serious about losing all the chemo weight instead of, whenever confronted by chocolate, just deciding it does not matter because what if I pass up this perfectly good chance to eat chocolate and then discover at my next follow up visit that my cancer is back? Well it was a good excuse while it lasted.

Next to last highest risk period check up Jan 3

Still a clean bill of health. Doc says recurrence almost univerisally within the first 3 years after finishing platiunum based chemo. For me that will end mid-late April. So only one more follow up during the highest risk period for recurrence, then follow up drops to every 6 months. Fingers crossed.

Most recent 3 months follow yesterday was good

In fact it was excellent. Physical exam with no signs of recurrence of disease. Blood test (CA-125) was bouncing around 4 to 5 to 3 last 2 measures. Normal is anything less than, I forget, but somewhere around 30. Next exam in October with CT exam. After that January 2013. After that April 2013 at which point I will have officially made it out long enough that my follow up exams frequency will drop to just once every 6 months because my risk of recurrence will have gone down.

So far so good. Current recovery goal is to once again meet the PHS fitness requirements. Next test scheduled for end of June. Ironically at the moment I can make the push up and side bridge tests but probably won't quite be able to meet the cardio requirement. (or the weight exam - which may be interrelated). Well - I can always try again in September.

CA-125 associated with March 2012 exam normal

CA-125 from 2 year follow up exam last March 28 = 7. Which remains below baseline. So that is good.

Follow up Exam one year after completion of trial

Wednesday March 28,2012 I had my one year follow up exam after completion of the investigational chemotherapy trial i was enrolled in, which was a 2 year follow up after completion of the standard chemotherapy. CT scan and exam were both completely clean. YEAH!!!

The blood test CA-125 is still pending because we forgot to draw it in advance, but I fully expect it will also be clean.

I also had a longer discussion with my doctor to answer the following questions:
What is the curve of the relapse rate? Rising over time? Dropping over time? Stable over time?
Answer: Highest risk of relapse is in the first 3 years after chemo.

What is the starting point for counting time out?
Answer: the end of standard chemotherapy (end of platinum drug chemo).

So since I completed my platinum chemo in April 2010 i am now 2 years out and still with a clean bill of health. One year more to go before the chance of relapse drops even lower.

To celebrate I had a wonderful one week visit from college friend Rosa Crocker during which we trooped over much of the Western NC mountains. And tomorrow I depart for Omaha Nebraska where I will watch the largest crane migration in the world (sandhill cranes) and then celebrate Easter with Susan Thomas and Sherri Buss - two more college friends who visited Atlanta this time last year to celebrate the end of my chemo. and the following weekend to Oklahoma to see my neice Emily dance in the last ballet of her college career.

Progress on my list of things I have to accomplish before I fully relax continues - the only major thing left on the list is getting all my paperwork at home organized optimally. And a visit with my architect Monday showed progress on the design for the house on the lot in Hayesville NC.

I am looking forward to hosting both my brothers and sister-in-laws the following weekend for the party celebrating the wedding of my first nephew, Judson Cowan and the lovely Blair Hume, which occured in Paris France on March 5.

It is one of those lovely times when life is just going well. I hope your springs are all going as nicely.

CA-125 associated with Dec 22 follow up exam

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

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

9 month follow up on December 22

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

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

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

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

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

Louisa

6 month follow up and still loving my best friend NED

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

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

CT - NED

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

Other measures -

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

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

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