August 28th Update

Gentle readers,

The whole Stevens/Clark family, August 18th.  "Silly Picture"

We've been back from a wonderful trip to Pawleys Island sinceSunday and are getting back into the swing of things.  We celebrated several birthdays at the two weeks at the beach and came back stuffed on shrimp, and cake and ice cream.  the boys (John and Troy and I) made a quick day trip up to Aiken and joined Joe Spencer for a round of golf at my old club, Palmetto Golf Club, one of the jewels of golf in the U.S.

South Carolina was generally hot, and occasionally wet, but we got lots of beach time and creek time as well.  We split the drive into two days each way, which helped a lot, especially for Zora, who had to do the driving.

As you may remember from my last posting, the most recent MRI shows that there is some new abnormal growth in my brain.Not unexpected with the kind of critter we're dealing with.  The good news is that I'm relatively symptom-free, so the immediate plan from the oncologist(whom I saw today) is to continue the current biweekly medication, (Avastin), which has shown periods of success in battling the beastie until or unless I begin to show some symptoms, or the followup head shots suggest that the beastie is too happy there.  I had hoped to triangulate this with the neurosurgeon this week at Johns Hopkins, but he had to cancel our appointment at the last minute for an emergency.  I am not really a prime candidate for surgery right now, because Avastin interferes with normal healing processes, and because the beastie is not readily presentable for surgery.

I have rescheduled the neurosurgeon for a consult in 2 weeks, and we'll have another "head shot" in about 6-8 weeks to see if the Avastin is doing any good, or if Mr. Beastie is growing.

In the meantime, I have enough get up and go to do most of the things I like, even if not so well as in the past.  We are concerned, but also optimistic.  And there are still a few things on my to do list that I intend to get moving on, like a proper celebration of our septadecadal birthdays this year.

Tonight was the first night of church choir rehearsal for the season, which looks like a really good one.  It was great to be back with so many dear friends, and get to work at making music again.

Thanks for your good wishes, prayers and encouragement.  They mean a LOT and we appreciate them all.

7 August Update

Gentle readers,

Well, the results are in but there is no dancing in the street as of yet.  I had the routine head shot (MRI) done Friday and got the results today from the radiologist via the oncologist.  This is the first head shot since March or April.  Will see the neuroslicer in a couple of weeks to triangulate what we know.  What we think we know now is that while I have been on Avastin for 8 months and it has kept me clean at least thru March and shrunk the known beastie, it is no longer as effective as it seemed to be. There is now evidence of new tumor appearance, likely related to the original GBM beastie, and not in a very good region of the brain.  The good news is that while I am less than 100% in capability,  I haven't had any major changes in symptoms and am still functioning very well.  The prevailing opinion is that I should continue the meds for another couple of months and see what the next head shot shows (unless, of course, new symptoms arise.) The neurosurgeon may have another opinion, but we'll see about that in time, too. For the reader who wants to know more, google up the splemium of the corpus callosum

At this point we face the future with optimism given that nothing they have found has reduced my capacity to enjoy and participate in LIFE.  Sure there are clouds on the horizon, but there always have been - We've known all along that at some time the beast would return.  But I still intend to shoot my age before I go, especially given the large digits involved in my age this year.

In the meantime, we leave on the 10th for our annual family pilgrimage to Pawleys Island for golf and beach and fishing.  Good times a'comin'. 

As we have in the past, we thank you for your love, and prayers and support.  Our load is much lighter knowing you are helping tote this barge.

29 June 2013

Greetings to all and sundry!

Gentle readers,

I continue comfortably in the land of the blissfully unaware.  Last brain scan was in March, as I've reported, and no compelling symptoms have been observed in the intervening months.  If you poke me hard enough I'll enumerate the things that bug me about me, but the bottom line is that I continue on doing and being as if the critter had not taken the bite out of me that it has.  My near and middle range vision is not very good, especially in that it takes longer to focus (and not as well) as it used to, but distant vision is still corrected pretty well with the coke bottle lenses.  Mainly that means I don't fool with the table saw any more, but otherwise I'm pretty well up for most anything, even if I tire readily.  Well readily enough to call for the afternoon naps anyway.

Two big events this week:  broke 90 on the golf course for the first time in months, playing with my "angels."  Also, Zora drove me up to Bryn Mawr for a long-delayed voice lesson, which wasn't too bloody.  Feeling a little better about both the swing and the voice, although both still need work.  I carry the encouragement that after all is said and done, I am to improving at both, even if not to the level of competence I had once attained.  At least the trend is good.  Last weekend John and Helen brought their families up to join us for Fathers' Day weekend.  We all enjoyed the fantastic fireworks display at Hagley museum, and the adults went up to the US Open at Merion Golf Club.  It was hectic, but wonderful to be able to enjoy all the little ones, and formerly little ones.

I will get another biweekly dose of the cancer-fighter (Avastin) this week.  Again, while it's an iv, it is only 30 minutes and doesn't bring any side effects.  We'll also schedule another MRI a couple of weeks out so by the end of the month I should have a more substantive report on what condition my condition is in.  To be honest, while I'm optimistic, I also am prepared for whatever they might find.

Summer has been busy staying in touch with friends and getting ready for the main event which will be two weeks at Pawleys Island where the kids and grands will join us, along with Zora's sister Anne, and her "kids."  We're also looking forward to a couple of days at Bethany Beach here in Delaware with the Swingles in late July.

Upon our return from Prague a few weeks ago, I was able to finish the photo exhibit I had at our church.  It was very gratifying, both for the kind words so many people passed on about the images of "Winterthur off the Beaten Path", and for the significant number of pieces that people paid for and carried home.  Glad I don't have to make a living at it, but appreciate the reception nonetheless.  I'm really thankful for Zora and Barbara Neville who had a major input on the layout - a key to a successful show.  Now to figure out what to do with the unsold pieces other than stacking them in the basement.

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