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.
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