I think I have put up some of the journey over the past couple weeks, but I'll summarize a bit and get to a bottom line. The MRI from 20 Sept continued to show the existence of non-welcome guests in my cranium. As the med I had been on (Avastin) had clearly not done all asked of it, we ceased it and are researching alternate therapies. We have identified a couple that look encouraging and are in touch with them (Duke, Hopkins, Miami.) Gather data.send it off. Wait for response. Blah, blah, blah.We really hope to get something started soon. The options are: immunotherapy which jacks up one's immune system to take on the cancer cells as the invaders that they are. Good success at this at Miami and I believe, Hopkins.Don't know about Duke, but Inquiries in are progress. The other option, which doesn't look as good a match for me is viral therapy. in this the tumor is infected with a virus which does in the tumor leaving the host (me) ok (if properly protected.) I have seen reference to use of viruses from cold to polio being effective. Duke and MD Anderson (Houston) are both working this angle. I"ve contacted Duke but have some reservations on its applicability to me. Blah, blah, etc.Talk later.
The immunotherapy,in practice, looks pretty much like what I"ve been doing with Avastin (get an IV every couple of weeks); The viral therapy is a little trickier - essentially another open brain intervention. Unless convinced otherwise, I like the feel of the immunotherapy, so I am pursuing it the more agressiveley. But we need more blah, blah, blah to get things moving.Maybe winter in Miami is up for this year. So life continues - waiting for phone calls and email replies. Feeling a bit fuzzy, but up for some singing and maybe some golf later this week. and hopefully some learned medical guidance Don't quite know how I'VE GOT this typed up without wiping out. Saw a lovely production of onizetti's "Elixir of Love" yesterday at the Grand Opera House in Wilmington and enjoyed rhe company of management of ODE for dinner and stories with the Clark family also. at Casa Zora. I t was great to see and hear old friends and such a splendid production. and to bask in the love and company of family and friends.
you could wish for me and Zora The patience and wisdom to get thru this thicket of decisions and frustrations,even as we wait (impatiently) for their formal presentation.
Gooder times a'comin'. This I know.
R
Monday, October 14, 2013
Wednesday, September 25, 2013
25 September Update
Gentle readers,
Our regular oncologist was away so we saw another
member of his practice today who gave us feedback on the current MRI, done
9/20/13. The bottom line is that there
has been significant progression (growths) in the brain since the last MRI at
the beginning of August.Some of the abnormalities have grown and a couple new
ones appeared. Thankfully there is not a
massive lump like the first beastie a couple of years ago.We have stopped the
medical therapy (Avastin) as it had not done its job well enough. What to do next is still up in the air
pending discussions with my neurosurgeon and my regular oncologist. We have recently learned of some very
interesting therapies at Duke and MD
Anderson, but don’t know that they could be expected to apply to my case or
not. We’ll see. I’ll just keep truckin’ along feeling
reasonably good. Next MRI probably in a
couple months. We're hanging in here ok and still of good spirits, as i hope you are too.Will let u know if we learn any thing of substance.
R
Saturday, September 14, 2013
Symptoms and condition, September 13
Dear readers,
Observations and Symptoms, 9/13/2013
The major purpose of this blog is to record milestones in my
medical journey. Altho several friends
continue to ask how I feel, or “what’s going on?” I assume most folks really
don’t want to know all the gnitty-gritty.
For those that do want a peek at what it feels like to be me right now,
I offer the following, with apologies if it borders on TMI. People say that I
look really good, but that probably has more to do with the fact that I haven’t
had to face the really noxious chemo that some people have to do. Perhaps the
most prominent symptoms relate to my ongoing feeling of drowsiness, and my
reduced capacity to focus or concentrate mentally. This is accompanied by a general lethargy and
reluctance to get up and “do what needs to be done.” Once provoked into action I can function OK,
but not necessarily with desired prowess. This is frustrating, especially on
the golf course, or at the computer, but I try to prepare myself for such
outcomes. For example, I’ve not broken
any golf clubs through anger, or lofted any clubs into high branches of nearby
trees. But am I acting maturely? You won’t get an answer here, but I still have relative command of a colorful vocabulary.
My balance is ok also, but I do use the rails on steps for
balance, especially in poor light. My
strength has diminished but again is ok for most tasks. In this regard I am limited mainly by the
fact that I have developed over the past year a hernia which cannot be
repaired because of the anti-cancer
medication I’m on, Avastin. The
medication acts to limit the formation of new blood vessels so any surgery is
out unless mandatory since Avastin would hinder the healing process.
There have been no recent changes in vision, but since the
original beastie was in an area of the
brain responsible for visual processing there were early changes which have not
lessened. Most prominent is about a 25%
loss of peripheral vision on the left side.
This creates blank spots, but it also slows down my ability to pick
things up quickly (visually, that is). For
example, it’s not always easy to follow a golf ball off the tee. Of course (as in the old joke) I need to work
on remembering where it went even if I do see it. Face recognition can still be an issue, both
recognizing a “known” face and putting a name with it. Again, this has been with me from the
beginning and is not something new. I’m
sure it would not take much effort to get me lost in the woods either. I am able to read, although it can tire me
also.
Being completely open here, I will note that I have had
several small events in the last couple weeks, that the doctors refer to as
‘auras.’ These are generally described
as mini-seizures which can accompany a real seizure. In my case a real seizure has never occurred. For
me it has been a sudden tightness in the esophagus and perhaps light-headedness
and a strange taste sensation, accompanied by a feeling of nasal dilation, All of which pass in just a few minutes. We have eliminated some medication which
might have been responsible, and have back-up plans for more anti-seizure
dedication if the events continue. The next MRI is scheduled for Friday the 20th, so we'll get more info on the ferrets in the cranium in the following week.
Wednesday, September 11, 2013
September 11 Update
Gentle Readers,
We saw our neurosurgeon, Dr. Weingart, Tuesday to review the most recent MRI (2 August) from his perspective. We left feeling better about the situation in my cranium than when we entered. He acknowledged the presence of some new growths, but by and large referred to them as subtle changes. He was happy with the relatively symptom-free me that he saw today .While I could wish for a few specific improvements in my condition, for the most part I'm ok, and the progression of my cancer has been much more moderate than for most. For him the more important indicator will be the next MRI, which he asked for next week (about 8 weeks from the previous). We still have the option of another round of radiation which can be very effective at the beasts that have taken up residence in my noggin We will talk about this with Dr. Weingart if the MRI comes back showing continued growth. My general good physical condition would make me a good candidate for further radiation. We will continue on the current medication, Avastin, for the time being also since it has been somewhat effective in the past. We will hope that it continues to be effective. I'll see the oncologist and get another dose of Avastin tomorrow, 9/11.
For the record, I played golf yesterday, making a couple competent strikes at the ball, and moving a lot of earth around. MY weapons of grass destruction are still deployed! I think it was one of the many foibles of the old me to have loved this game so much.
We saw our neurosurgeon, Dr. Weingart, Tuesday to review the most recent MRI (2 August) from his perspective. We left feeling better about the situation in my cranium than when we entered. He acknowledged the presence of some new growths, but by and large referred to them as subtle changes. He was happy with the relatively symptom-free me that he saw today .While I could wish for a few specific improvements in my condition, for the most part I'm ok, and the progression of my cancer has been much more moderate than for most. For him the more important indicator will be the next MRI, which he asked for next week (about 8 weeks from the previous). We still have the option of another round of radiation which can be very effective at the beasts that have taken up residence in my noggin We will talk about this with Dr. Weingart if the MRI comes back showing continued growth. My general good physical condition would make me a good candidate for further radiation. We will continue on the current medication, Avastin, for the time being also since it has been somewhat effective in the past. We will hope that it continues to be effective. I'll see the oncologist and get another dose of Avastin tomorrow, 9/11.
For the record, I played golf yesterday, making a couple competent strikes at the ball, and moving a lot of earth around. MY weapons of grass destruction are still deployed! I think it was one of the many foibles of the old me to have loved this game so much.
Wednesday, August 28, 2013
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.
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.
Wednesday, August 7, 2013
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.
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.
Saturday, June 29, 2013
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.
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.
Friday, May 31, 2013
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
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
Thursday, May 16, 2013
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
Wednesday, April 3, 2013
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
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
Monday, March 18, 2013
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
Friday, February 8, 2013
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
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
Wednesday, January 9, 2013
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
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
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