31 may from Prague

Gentle readers,

 Friday the last of May. Sitting in our hotel room in Prague waiting for the rain to stop, or at least, moderate.  Looking forward to a performance of magic flute tonight at the state opera. The choir returned to the states Tuesday from Salzburg where we'd been for several days.  Our friend Franz Knecht met us that day whence we spent a beautiful day in the nearby mountains, specifically st. Gilgens and the Wolfgangsee (lake). On to Prague the next day by train.  Enjoyed a nice choir and organ concert yesterday in a church where we had sung during our first days in Prague with the choir.

I'm hanging in all right, but I do get tired walking the hills and cobblestones of Prague.  It doesn't help that there is not a right angle intersection in the town and the maps are nearly impossible to make out. But we've managed to find our way ultimately on every outing. Zora is doing a great job at navigating this strange town, which is a good thing as my capacity to take it all in is not what it used to be. People have been very helpful which is a good thing, especially since our Czech is not much to be proud of either.

Off to figure out more about the city, like how to find the opera tonight.

Cheers,

Ross

Hurray for May

Gentlefolk,

Again its been a while since I’ve checked in with folks, so I offer the following update on “no news is good news.”  In general I continue to feel pretty good, the only exceptions being general creakiness of joints, especially after being seated for a while.  I do have a tendency to fade out fairly quickly, but it doesn’t keep me from doing most of the things I like or need to do.  I’ve been on the golf course a few times in recent weeks, and although the results are not satisfying, at least I’m able to get in 18 holes without medical assistance.  I get frustrated  at times, especially at the computer where I have previously demonstrated some enviable facility if not skills.  I takes much more mental energy than it used to, which wears me out more quickly, and of course leads to that frustration.  Part of it is the visual deficit also.  Mid-range correction doesn’t seem possible, probably an indication of brain function loss rather than lens correction.

Folks tell me I’m looking really good, but I suspect what that really means is that I’ve lost the puffiness that came with steroids, and that I’ve managed to control my drooling, at least in public.

While I haven’t had an MRI since the March visit I also have no reason to suspect that the beast in my brain is growing or trying any stronger to establish dominance over my body.  Which is to say that there really are no new symptoms to report either.

Zora and I are preparing for our choir’s tour of Prague and Salzburg starting next week where we will be singing in several grand old churches as well as some impromptu “moments musical.”  We are especially excited because my brother Henry’s wife Bev will be joining us on the trip and singing with us as well.  Henry has an equally glorious golf outing lined up.  There will be tales of glory to go all around.  Our only regret at this point is that there are so many old friends that we’d like to visit while on the eastern side of the pond.  Too many in fact to visit, so we must begin to plan for our next visit.  When we return we will be hosting our kids and their families  for the annual fireworks and picnic at Hagley museum nearby, followed the next day by the adults going up to Merion Golf and Cricket Club in Philly/Ardmore to watch the US Open for the day.  After that we hope to get our acts together for the August family time at the beach at Pawleys Island South Carolina.

Like I said, there’s not a great deal of new news here.  But we continue in the mindset that no news is good news.  I continue to feel blessed by the support and love that continues to pour over me and Z.  I hope to continue to overstay my welcome.  I can’t thank you all ever enough.  I hope you know at least in part how important every small gesture is to such a one as I, and how much appreciated.

I wrap this up with a glass of bubbly from the Loire in hand (and mouth) so blame the Loire for any typos and awkwardness of syntax. 

Blessings and thanks to all,

Ross

April 3 report

Having seen the oncologist today I have the following report.  The MRI done last week has been interpreted and I can now say that the medication has continued to help.  While there is still "abnormal" tissue on the edges of the surgical cavity, it continues to shrink in extent.  In other words, the meds are helping.  The doc is not aware of any cases where my medication has caused the elimination of the cancer, smaller is still better than bigger or no change and who knows, there's a first time for everything.

Woo-woo!  Medication treatments will continue every two weeks, probably for as long as I do.  No big deal.  I have been on a prophylactic dose of antibiotic which he has now terminated.  In addition I remain on the anti-seizure medication, a daily pill just in case.

Symptom-wise I remain somewhat lethargic, but once you get me moving I can do most anything, excepting my old tall buildings in a single bound thing.  Spring is still threatening to come to Delaware, and I remain fully prepared for its arrival.

We are now in the home stretch of preparing with our church choir to do sing-ins in Prague and Salzburg later in May.  While we will be carrying a "brain cancer first aid kit" we are still cleared to go and have fun.  At risk of repeating myself, "woo-woo!"

We'll probably get another MRI in June or July, so unless the symptoms change in the meantime we will not know anything of significance until later this summer. We'll hope that warmer weather will get me in better shape and feeling stronger, which would be noteworthy also.  But in the meantime, no news is good news.

Ross, strawman, formerly known as tinman, and still Nanu and Nunu

18 March Report

Gentlereaders,

It has been some time since I’ve been in touch with you, and as is often the case, no news is good news, or at least qualified good news.  There is nothing new going on in the medical front, which is of course good news.  I continue in the mode of “generally fit for duty” even if inclined to nap a bit more often than might be considered normal for a person of my young(-ish) age.  More definitive opinions will be offered following my next MRI which will be next week.  In the meantime there are no signs (possibly other than my customary lethargy) to suggest any deterioration in my condition.  No alarm bells are ringing, but I appreciate all the good thoughts and prayers that you may spare in the meantime.

We returned from our month in Florida about two weeks ago and we continue to get back into the mode of pre-spring in Delaware.  Of course “pre-spring” is just another way of saying “winter.”  Wintry mix developing for the evening. North Florida proved again the strict definition of “sub-tropical” climate.  We even had a freeze or two, a good nor’easter, and plenty of dreary days, but we did get the shorts on a time or two, and came home with some evidence of a lackadaisical approach to sunscreen.

My brothers and wives, as well as Zora’s sister, visited while we were there, which was great.  The brothers and I played for the champion golfer of the year award for the first time, but sadly, we all tied for third place.  Beats the heck out of shoveling solid rain, however, so we will carry over the championship until next year and expect better golfing conditions to prevail.

We drove by Atlanta on the way home, stopping to see son John and his family.  While it was colder and drearier in Atlanta, it was still fun to be with the kids and the grandgirl for a couple days.

Thanks again for your love and support.  I will do all in my power to keep the good news coming.

Ross

8 February Update

Good friends,
Buona Gente,

It's been a while since I've given you an update, but while there's not much of substance to report, I'll give you a status report.  If for no other reason it should at least let you know that we're still chugging along on relatively smooth terrain.

As I write I am gazing out on the Atlantic at Fernandina Beach Florida.  We are here for the month of February and enjoying the prospects of a nor'easter-free weekend.  Zora did the driving from Wilmington, which we parsed into 3 days with pleasant stops along the way in Edenton NC, and Savannah GA.   We've rented a small house on the beach so the views are great even if the weather is less than totally inviting.  It is warmish (currently near 60), yet not truly warm with a sprinkle most every day, but no truly foul weather.  I'm hoping to get in a little golf with Zora's cousin Al Tyre this afternoon, with more to come.  Zora's sister Anne is with us through the weekend, and my brothers and wives will join us next week for a brief reunion and brotherly golf championship match.  Fernandina Beach is a part of Amelia Island, and there has been a small chamber music series here for the past week.  We saw the Kruger Brothers Monday night, and violinist Hilary Hahn Wednesday night.  We'll get a dual piano accounting of "Rhapsody in Blue" at the Palace Saloon next week!

On the medical front, my oncologist in Wilmington has lined me up with a substitute in nearby Jacksonville Beach, whom I saw Wednesday.  She is overseeing my bi-weekly infusions of Avastin as well as keeping an eye on me generally too.  The Avastin continues to be symptom-free, altho it does reduce the clotting ability of the blood which is fine unless I were to have an accident of some kind.  Mainly it seems to be working so getting a 30 minute iv every couple of weeks is not a bad thing.  I have not had another MRI since the one in early January which  showed improvement in the tumor and have not experienced any symptoms to suggest that I should be concerned about any change in direction.  I am still shaking off the effects of the steroids which were stopped about two weeks ago and will take some weeks to be purged from the system.  These effects include a lack of energy/strength, and a tendency to lose focus if I don't work at it.  I am generally feeling good and able to do most everything a hale and hearty 69-year-old should be able to do, if not quite as well, or for quite as long.  Memory, especially short term, and reading comprehension have taken a fairly significant decline in recent weeks.  Occasionally frustrating, but that doesn't stop me from reading (or trying to remember where I left my coffee cup).  As far as regular meds go, I remain on Keppra, which is an anti-seizure drug, which I've been on from the get-go and will probably remain on as long as I'm kicking.  I've never had any seizures so maybe it's working/helping.   I'm also on a general purpose anti-biotic which will probably be eliminated in a few weeks.  As I said everything is quite easy to get along with and seems to be doing a good job.

Well, it's not exactly Lake Wobegon, but that's the news, such as it is.  Hope it finds you well and warm and safe.  We look forward to hearing from you and seeing you soon.

Ross

9 January good news

Gentle readers,

We have just seen the oncologist who passed along the radiologist's reading of the Monday MRI. Bottom line:  significant reduction in the tumor since he last MRI and the beginning of avastin. Needless to say:  we are excited!  Of course we're also sitting around getting bored waiting for my scheduled infusion of avastin, but the view is worth the climb.

Further good news is that we're getting off the steroids immediately unless they prove to be necessary later. Other meds may be out soon too. Maybe me 4.0 is going to be the winner after all!

Thank you for your love, prayers, and support!

R

Reflections on 2012

                                          Pawleys Island 2012

It has truly been a year of great surprises and great joys.  As you no doubt are ware there have been many “surprises” over the past 12 months, but they have been accompanied by overflowing measures of love and support from family and friends.  So many dear folk have been in frequent touch, and others I know are thinking of us and praying for us that in so many ways our lives have truly been enriched.  As we pass this way, we continue to learn of those whose challenges are similar, and those whose challenges seem even more daunting, all of whom receive the benefit of our prayers as well.  We have enjoyed the visits and assistance not only of our kids and their families, but also of my brothers and many more, family and otherwise.  Wish there had been a more positive provocation, but it has been great to be so connected this year.

We have been fortunate that circumstances have permitted us the opportunity for many of our special trips and getaways that we have always looked forward to.  Of course the primary event in this category was our two weeks in Pawleys Island, SC, largely with kids and grands.  I was strong enough to play real golf, and even had a round or so in the 70s, and not from the old men’s tees.  This was preceded by a wonderful trip to New Mexico in July where we immersed in photo ops (Ghost Ranch, high road to Taos, Santa Fe) and lots of music in Santa Fe (opera, chamber music, Desert Chorale)  How thankful I am that all of this has been possible. 

John and Anna hosted all our family at their new residence in Roswell, GA for Thanksgiving,. We spent the week and it was a great time to be with the Stevens and the Clarks.  It is always special when the little girl cousins get together. While we’ll not have multitudes for Xmas at Casa Zora we will see almost everyone over the holidays, and have some time for ourselves also. We have booked a small house in Fernandina Beach Florida for the month of February, and are looking forward to being there and seeing cousins and other family, as well as other familiar faces and sights.   It’s a long drive, and I wish I could help Zora with it, but I’m hoping to be in better shape soon and able to do a bit here or there.

Just for the record, I have now had two surgeries for the brain tumor/cancer, which seems to have come back yet again. Regretfully the radiation and chemo did not do the job well enough.  While the surgeon was very optimistic following both surgeries, it is the nature of this particular cancer to recur, even tho it doesn’t metathesize elsewhere. It has been treated for the 6 weeks or so with a new (to me) drug therapy that looks very promising. News on its effectiveness will be available in early January with my next MRI.  Your prayers are welcomed.  You may also know that while the recovery from the initial brain surgery last December was progressing well, I suffered a fall and developed a severe infection, which required major surgery and kept me out of play essentially until late March.  In many ways the unkindest cut of all, stealing “healthier” time, and delaying chemo and radiation.  But I lived to tell about it and have no lasting impacts from it.

I feel ok, but not great, if a little fuzzy at times.  We can generally do what we want when we want, but my overall stamina and presence leave something to be desired.  On the good side, that means afternoon naps are not a problem.  I see fairly sudden and significant impacts on short term memory in particular, and some vision deterioration, which is not unexpected given the location of the original tumor.  I did have some significant stability issues over the past month or so which have been ameliorated with meds (steroids).  Unfortunately the meds also cause significant large muscle deterioration which has weakened my legs and shoulders wuite a bit.  The docs are tapering me off of them, but it will take a while to get my B game back,  let alone the A game.  But it will come; 

Our church choir is going to Prague and Salzburg May of 2013.  We plan to go and sing with them as well, and we have the house at Pawleys Island booked for August also.

As everyone tells you, every day is a new day, enjoy it for what it brings.  Whether you are healthy or not.  What happens, happens.  Raging at the tide will not make it come in or go out.

Thank you for the many kind thoughts, prayers and deeds throughout the past year.  You cannot imagine how much they have meant.  We have been blessed in many,  many ways.

May the holiday season bring you great joy.  I wish you every fortune and joy in the coming year, and look forward to telling you about an even better year at the end of 2013.

 Ross