The trip has gone well thus far, but Mom's fragility underscores my relief that we did not try to go to Spain. Mom can walk only a few yards' distance before she needs to sit down. She has slept magnificently here in San Rafael - through the night every night, followed by a morning nap, and usually a late afternoon nap. She is sleeping about 14 hours out of every 24. Her appetite is good. She focuses well for short periods (and for reasons unknown always seems to be at her best on the phone).
Mom enjoyed talking to all of you on her birthday yesterday. K and C have been magnificent in helping her move about. C had access to a TV production of an opera staged by the SF Opera Company (Don Giovanni) and she has enjoyed watching a portion of it each evening before turning in.
We arrived via Delta early afternoon on Saturday. Everything went very well, right from the magnificent help from the Cs, who met us on the dot at 7 a.m. at the cell phone lot at Charlotte airport (but W did not come in his 1929 red Rolls Royce, a major disappointment), through check in at Delta (the staff was very accommodating), to boarding, seating, service, etc. We used our own wheel chair for the trip; this was a blessing, because we could take Mom right to the plane in it, and it was there waiting for us when we disembarked. K was curbside when we came out the door. They returned to San Rafael while I traveled the airport train to find the magnificent monster-vehicle (Ford Expedition). I arrived in San Rafael about 3:30 (the queue for car rentals was long at all the counters; a chap behind the counter told me that they were still recovering from the gas blast on the hillside in San Bruno, just a couple of miles from the runways).
Quiet dinner Saturday evening. Sparkling weather, which explains why 35 million people have moved to California (not all legally, I understand!). Sunday Mom and I drove gently from San Rafael through small stands of Redwoods to the Pacific , stopping for lunch at a funky little place (Nicasio) recommended (rightly so) by C. We avoided beach traffic by staying north of Stinson Beach, and taking advantage of a miracle (an empty parking place right next to a park bench overlooking the Pacific in Bolinas) got out of the car and sat in the coastal grey zone for a few minutes. The shore temperature could not have exceeded sixty, and I bundled Mom in several light blankets. Bolinas is not a style-conscious beach; it attracts the now aged 1960s surfing crowd. They are wizened but tough, carrying their boards to the beach, dressed only in their bathing suits. C noted later that Bolinas does everything it can to fight off the upper classes. Signs everywhere excoriated everything hinting at convention and establishment politics. Many of the license plates came in blue/yellow and black/orange - the motif of license plates in California in the 1950s and 1960s. (So you can turn the clock back - go to Bolinas.)
Sunday evening the W clan gathered for dinner and birthday cake for Mom: E and D; M and A, young B and P, and younger C A. Mom held up well through the cake and a couple of very nice presents.
Yesterday (Monday) Mom and I drove (with K as tour guide) into San Francisco to see old haunts: where Mom lived (Sunset Beach) while at SF State and later with K; North Beach; the refurbished Presidio (the military is out but the officers housing and many barracks have been preserved and converted to offices, very tastefully), Nob Hill, Russian Hill, the hotels we could never afford to have even a cup of coffee in, the famous site of my mother's running out of gas astride the cable car line on Powell, Embarcadero (the Bank of America building now sports a new moniker). Going into SF we took the slow road through Sausalito (I could not recall being there before - very Italian seaside atmosphere).
Last night we went to a bistro in Ross for dinner and had another piece of birthday cake when we got home, and before a short stint with the mandatory opera.
Mom is still asleep (8 a.m.) but when she is up, bathed, pills-armed, etc. we may drive gently up to Healdsburg to one of the small wineries, have some lunch, and return here. K and C leave for three weeks in Europe on Thursday (including biking in Ireland); we will leave tomorrow and head south. We will stop somewhere north of LA, perhaps near one of the mission churches, for Wednesday night, and then position ourselves to greet S, K and the young gentlemen when they arrive in San Diego from Denver Thursday evening. I am glad they and J and S arranged accommodations, because we heard yesterday morning that one of our friends in San Diego is in hospital in the wine country with food poisoning, so we do not know when they will return to San Diego.
Mom enjoyed hearing from all of you yesterday. Again, we are moving very, very slowly, but she does want to get out and to see something every day. Love, Dad"
Tuesday, September 14, 2010
09/08/10 - Update
Another from Dad
"I am getting the house, inside and out, ready for our departure at the end of the week.
On a happier note I think the hole in Mom's head is healing. New skin is filling in the space (there is a ways to go) and inflammation is minimal. I would not be surprised, if the current scenario continues, to find the doctors suggesting very minimum plastic surgery."
"I am getting the house, inside and out, ready for our departure at the end of the week.
On a happier note I think the hole in Mom's head is healing. New skin is filling in the space (there is a ways to go) and inflammation is minimal. I would not be surprised, if the current scenario continues, to find the doctors suggesting very minimum plastic surgery."
09/5/10 - Update
I'll pass along recent updates I've received from Dad.
"All of you except Ted have been aware since early this morning that I faced a certain crisis stemming from Mom's "aura" yesterday. Just after noon, on our way home from leaving K at the airport, she showed the classic symptoms of an "aura". Fortunately we were nearly home and I was able to give her an anti-seizure tablet and give her some rest.
Mom finally went into a deep sleep at 5:30 am. I came away from this experience pretty much convinced that the Spain agenda did not make sense. Before she went to sleep Mom agreed that we needed to rethink this, but this morning, when she was in better shape (but still fragile) she was understandably of two minds about Spain. During the morning we had some pretty frank conversations, and Mom resisted giving up the idea. But she admitted that she had not functioned well last night, and gradually came around to the idea (encouraged by talks with a couple of you) that Spain might not work. I made it plain that I was simply not strong enough to be able to cope in a public environment - such as on a plane or in an airport - with some of the challenges of last night, when she on two occasions was just a dead weight.
Mom slept off and on most of today (not getting up until almost noon and then sleeping on the porch for several hours in short stints). She has not had a recurrence of the "aura" but her speech is still slow, her eyes are not well focused, and her walking is impaired.
Gradually we evolved a plan to substitute for Spain. We will fly to San Francisco later this week, then after staying several days will go down to San Diego. S and the boys will come in about the 16th and stay until the 20th. We will return to San Francisco and then return to Charlotte. We will have several chances to see S and J and the new baby.
We have Duke appointments on September 28th, which will include an MRI (another challenge), meetings with the Dr. and his staff, and making arrangements for the skin graft (the aperture looks good and seems to be filling in with new skin).
Love, Dad
"All of you except Ted have been aware since early this morning that I faced a certain crisis stemming from Mom's "aura" yesterday. Just after noon, on our way home from leaving K at the airport, she showed the classic symptoms of an "aura". Fortunately we were nearly home and I was able to give her an anti-seizure tablet and give her some rest.
Mom finally went into a deep sleep at 5:30 am. I came away from this experience pretty much convinced that the Spain agenda did not make sense. Before she went to sleep Mom agreed that we needed to rethink this, but this morning, when she was in better shape (but still fragile) she was understandably of two minds about Spain. During the morning we had some pretty frank conversations, and Mom resisted giving up the idea. But she admitted that she had not functioned well last night, and gradually came around to the idea (encouraged by talks with a couple of you) that Spain might not work. I made it plain that I was simply not strong enough to be able to cope in a public environment - such as on a plane or in an airport - with some of the challenges of last night, when she on two occasions was just a dead weight.
Mom slept off and on most of today (not getting up until almost noon and then sleeping on the porch for several hours in short stints). She has not had a recurrence of the "aura" but her speech is still slow, her eyes are not well focused, and her walking is impaired.
Gradually we evolved a plan to substitute for Spain. We will fly to San Francisco later this week, then after staying several days will go down to San Diego. S and the boys will come in about the 16th and stay until the 20th. We will return to San Francisco and then return to Charlotte. We will have several chances to see S and J and the new baby.
We have Duke appointments on September 28th, which will include an MRI (another challenge), meetings with the Dr. and his staff, and making arrangements for the skin graft (the aperture looks good and seems to be filling in with new skin).
Love, Dad
Friday, September 3, 2010
09/03/10 - Update
On Tuesday, after a month of recuperation from her early August surgery, Mom revisited the folks at Duke for an follow up MRI and checkup.
Not surprisingly, the MRI procedure itself went poorly (these are never easy for Mom to do, and if she is not sufficiently sedated, as she was not, she has a hard time being still enough). But in the end it was complete.
Not surprisingly, since Mom has been off the chemical treatment for several months now, though of course disappointingly, the tumor has resumed its growth.
As we suspected would be the case, the infection on the side of her head, while markedly better than it was and no longer an infection, has not healed to the point where mom can resume the full scale chemical treatment. As a result, Duke is putting mom on a reduced-strength Chemo program that she will take while the area on her head continues to heal. Once this has happened, all things being equal, she will resume the previous cocktail that proved effective in combating the tumor.
In the meantime, in the spirit of balancing quality of life with an aggressive fight against the tumor, mom and dad have scheduled a trip to Spain. The folks at Duke were very supportive of their doing this. It is something that mom has been focused on doing for a long time and that she is pleased to be able to do. They leave in the next week and will stay for a couple of weeks or so. Upon return, she will go to Duke, have plastic surgery to accelerate the healing of the area on her head, and then will continue the maintenance Chemo program until she is physically ready to resume the full scale assault on the tumor.
And that's about it on the "update" front. As you know, these posts are designed to keep you as up to speed as possible but have historically been designed to keep our respective opinions on her condition somewhat to ourselves, so to speak. So I'll break the mold a bit and offer some thoughts, but not too many. . .
All of you know by now it's a brutal disease with a generally dim prognosis. At the end of the day, I would say that mom's progression through this battle is pretty much in line with expectations, albeit towards the upper end (when all things are considered). On the plus side, we've learned that there is a drug combination that is effective in fighting the tumor. On the down side, however, we've also learned that that drug combination takes a very heavy toll on the rest of her system and can not be taken lightly or continuously. We've seen that she has periods where she is very engaged and sharp and periods in which she is significantly more subdued. These periods seem to be very much driven by what's going on around her and the subject on which she is focused. For me, I'm most pleased that during periods when she is engaged, it's clear that her brain is still very capable of doing many of the things she'd need to do to maintain a good quality of life. On the downside, I would have to say that her energy levels, physical strength, and motor skills are not where I'd hoped they'd be (though they have remained pretty consistent lately), had I known that she would have had a period where she had the upper hand versus the tumor (as she's had over the past few months). Unfortunately, these have significant negative impacts on her quality of life from a day to day perspective. I guess, in sum, things could of course be better, but they could also be a whole lot worse. In the end, most importantly, we are very lucky to have had, and to be able to expect to continue to have, real, high quality interaction with her.
So that's it. As conditions change or we pass through milestones, I'll continue to add posts to the blog. So, while a month between posts is a long time, keep in mind that down the road no news is more a reflection of not much change to the status quo than anything else.
Thank you all for the love and support you have and continue to provide to Mom, Dad, and all of us. I know I speak for my family when I say that we have all been amazed - truly truly amazed - at the extent to which friends and family have demonstrated their love and support.
Love to all,
Ted
Not surprisingly, the MRI procedure itself went poorly (these are never easy for Mom to do, and if she is not sufficiently sedated, as she was not, she has a hard time being still enough). But in the end it was complete.
Not surprisingly, since Mom has been off the chemical treatment for several months now, though of course disappointingly, the tumor has resumed its growth.
As we suspected would be the case, the infection on the side of her head, while markedly better than it was and no longer an infection, has not healed to the point where mom can resume the full scale chemical treatment. As a result, Duke is putting mom on a reduced-strength Chemo program that she will take while the area on her head continues to heal. Once this has happened, all things being equal, she will resume the previous cocktail that proved effective in combating the tumor.
In the meantime, in the spirit of balancing quality of life with an aggressive fight against the tumor, mom and dad have scheduled a trip to Spain. The folks at Duke were very supportive of their doing this. It is something that mom has been focused on doing for a long time and that she is pleased to be able to do. They leave in the next week and will stay for a couple of weeks or so. Upon return, she will go to Duke, have plastic surgery to accelerate the healing of the area on her head, and then will continue the maintenance Chemo program until she is physically ready to resume the full scale assault on the tumor.
And that's about it on the "update" front. As you know, these posts are designed to keep you as up to speed as possible but have historically been designed to keep our respective opinions on her condition somewhat to ourselves, so to speak. So I'll break the mold a bit and offer some thoughts, but not too many. . .
All of you know by now it's a brutal disease with a generally dim prognosis. At the end of the day, I would say that mom's progression through this battle is pretty much in line with expectations, albeit towards the upper end (when all things are considered). On the plus side, we've learned that there is a drug combination that is effective in fighting the tumor. On the down side, however, we've also learned that that drug combination takes a very heavy toll on the rest of her system and can not be taken lightly or continuously. We've seen that she has periods where she is very engaged and sharp and periods in which she is significantly more subdued. These periods seem to be very much driven by what's going on around her and the subject on which she is focused. For me, I'm most pleased that during periods when she is engaged, it's clear that her brain is still very capable of doing many of the things she'd need to do to maintain a good quality of life. On the downside, I would have to say that her energy levels, physical strength, and motor skills are not where I'd hoped they'd be (though they have remained pretty consistent lately), had I known that she would have had a period where she had the upper hand versus the tumor (as she's had over the past few months). Unfortunately, these have significant negative impacts on her quality of life from a day to day perspective. I guess, in sum, things could of course be better, but they could also be a whole lot worse. In the end, most importantly, we are very lucky to have had, and to be able to expect to continue to have, real, high quality interaction with her.
So that's it. As conditions change or we pass through milestones, I'll continue to add posts to the blog. So, while a month between posts is a long time, keep in mind that down the road no news is more a reflection of not much change to the status quo than anything else.
Thank you all for the love and support you have and continue to provide to Mom, Dad, and all of us. I know I speak for my family when I say that we have all been amazed - truly truly amazed - at the extent to which friends and family have demonstrated their love and support.
Love to all,
Ted
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