Hello, All:
This is Susannah and I'm filling in for Elaine at the moment:
If you are interested in making food (vegetarian) for Elaine and Francis, Lynn has created a online sign-up sheet for the Food Brigade:
http://www.doodle.com/8mxsq9zkpqe7aiex
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Need your prayers TOMORROW!! Wed Oct 7!
Dear Family and Friends,
Even though I'm almost too tired to be writing this, I'm emailing anyway to ask for your prayers -- good vibes etc tomorrow mornng between 8 and 8:45 am. Focus them on Francis' doctor.
Dr. Inhorn, Francis' oncologist gave me a report today. He said they're "pretty sure Francis has cancer." But it's such a rare kind of cancer whose exact diagnosis still eludes them, that he sent it to Harvard University to get their consensus. Which of the 20 kinds of already rare sarcoma could it be?
If in two days they don't have a diagnosis, he'd be ready to do radiation, because he knows radiation would help no matter what kind of cancer it is. We accepted that, even though, except for 3 wobbly trips to the bathroom, Francis is now reduced to a fully supine position day and night. Even with all the meds, sitting up to eat is too painful to do.
But a long talk tonight with a very knowledgeable friend helped Francis and me grasp the whole situation with new eyes. So I plan to telephone Dr. Inhorn tomorrow to urge him to act NOW.
So after my bath and some relaxing yoga, I'll review my prepared notes preparing for that 8:00 am call.
I know your prayers will move our doctor to act. As our friend said, "Your doctor is right
there. He just needs a little nudge. That nudge is your energy focused on Dr. Inhorn tomorrow,
either at that time or when I can reach him.
Two more things: Because Francis is functionally impaired, my willing, loving services are needed from morning till night. So Lynn (Rowan's mom, -- remember?) is in the process of organizing a meal brigade for Francis and me. Details to follow soon.
Secondly, right now I've had no time to read any emails. I expect things will ease up once Lee
(Rowan's dad) helps us use technology to pay bills -- something Stephanie offered too, by the
way...Thanks dear Stephanie!) But IF YOU WANT ME TO READ SOMETHING IMPORTANT I
NEED TO KNOW, WRITE IN THE SUBJECT LINE: READ THIS. I will indeed read all emails
later when Francis gets relief from his debilitating pain. He's a sweetheart, still so patient! But we must get him pain relief as soon as possible. Being disabled as he is is very risky!
Much much gratitude,
Elaine
Even though I'm almost too tired to be writing this, I'm emailing anyway to ask for your prayers -- good vibes etc tomorrow mornng between 8 and 8:45 am. Focus them on Francis' doctor.
Dr. Inhorn, Francis' oncologist gave me a report today. He said they're "pretty sure Francis has cancer." But it's such a rare kind of cancer whose exact diagnosis still eludes them, that he sent it to Harvard University to get their consensus. Which of the 20 kinds of already rare sarcoma could it be?
If in two days they don't have a diagnosis, he'd be ready to do radiation, because he knows radiation would help no matter what kind of cancer it is. We accepted that, even though, except for 3 wobbly trips to the bathroom, Francis is now reduced to a fully supine position day and night. Even with all the meds, sitting up to eat is too painful to do.
But a long talk tonight with a very knowledgeable friend helped Francis and me grasp the whole situation with new eyes. So I plan to telephone Dr. Inhorn tomorrow to urge him to act NOW.
So after my bath and some relaxing yoga, I'll review my prepared notes preparing for that 8:00 am call.
I know your prayers will move our doctor to act. As our friend said, "Your doctor is right
there. He just needs a little nudge. That nudge is your energy focused on Dr. Inhorn tomorrow,
either at that time or when I can reach him.
Two more things: Because Francis is functionally impaired, my willing, loving services are needed from morning till night. So Lynn (Rowan's mom, -- remember?) is in the process of organizing a meal brigade for Francis and me. Details to follow soon.
Secondly, right now I've had no time to read any emails. I expect things will ease up once Lee
(Rowan's dad) helps us use technology to pay bills -- something Stephanie offered too, by the
way...Thanks dear Stephanie!) But IF YOU WANT ME TO READ SOMETHING IMPORTANT I
NEED TO KNOW, WRITE IN THE SUBJECT LINE: READ THIS. I will indeed read all emails
later when Francis gets relief from his debilitating pain. He's a sweetheart, still so patient! But we must get him pain relief as soon as possible. Being disabled as he is is very risky!
Much much gratitude,
Elaine
Monday, October 5, 2009
Francis at home in hospital bed
Dear Family & Friends,
He's asleep now in our yoga living room, facing the SW bow windows and to his left the glass door through which in the morning he'll be able to see the chickens.
Biopsy results in on Monday, but needed more refined analysis!!! So at 8:30 I'll call Dr. Inhorn the oncologist. VNA nurse will be calling between 8:00 and 9:00 am.
No time for many details: full days. I'm his nurse now and the one paying the bills, getting the groceries, going to the credit union and all that.
First day 3 eggs were lain!! I gave one to the neighbor who helped move the futon to make room for the hospital bed, and the other to Susan C. who helped prepare the room for my sweetheart. Pamela (yoga teacher and friend) made my salad, vacuumed the rug, put together a bouquet of garden flowers etc... and I'm off to yoga and bed now. Alarm set for 6:00 am -- for Francis' pain pill. Will catch up on my sleep in the PM. Adrenaline is helpful when needed, isn't it? ;o)
Elaine
He's asleep now in our yoga living room, facing the SW bow windows and to his left the glass door through which in the morning he'll be able to see the chickens.
Biopsy results in on Monday, but needed more refined analysis!!! So at 8:30 I'll call Dr. Inhorn the oncologist. VNA nurse will be calling between 8:00 and 9:00 am.
No time for many details: full days. I'm his nurse now and the one paying the bills, getting the groceries, going to the credit union and all that.
First day 3 eggs were lain!! I gave one to the neighbor who helped move the futon to make room for the hospital bed, and the other to Susan C. who helped prepare the room for my sweetheart. Pamela (yoga teacher and friend) made my salad, vacuumed the rug, put together a bouquet of garden flowers etc... and I'm off to yoga and bed now. Alarm set for 6:00 am -- for Francis' pain pill. Will catch up on my sleep in the PM. Adrenaline is helpful when needed, isn't it? ;o)
Elaine
Sunday, October 4, 2009
Oct 4 Sun Relieved
Dear Family and Friends,
It'll be serious enough within the next few days learning what the biopsy reveals. But I discovered tonight how ignorance and misinterpretation can sound a false alarm.
When Francis' nurse told us last night as we chatted a long time, that a living will was not enough to prevent a medical rescue if "something happened" to Francis, -- that we had to tell the doctor directly not to resuscitate him if that's what he wanted, my heart felt very heavy. Heavy because she repeated he was highly medicated to prevent pain, and with the side effects of that medicine, and at his age, anything could happen. I heard her say "Code 4."
So tonight when the doctor came to officially get his "advance directives," I asked her point blank: "Could you tell me honestly why Francis has been put in "Code 4 category?" She looked puzzled, - "Never heard of Code 4!" she said. Then she realized what I was alluding to, and explained that ALL patients are put BY DEFAULT into category -- "Full Code," meaning if the patient's heart stopped etc etc, they'd rush in and get it started again. The other category for all practical purposes, is "DNR," -- "Do not resuscitate."
Neither Francis, now at age 82, nor I, if I were in his shoes, would want to be resuscitated. No, not with some of us suspecting, -- but who knows... we'll know tomorrow -- maybe bone cancer? (which is very painful -- and pain is what he's dealing with.) No, in his situation, we would opt for DNR,-- as the doctor put it, -- " letting nature take its course." DNR is what he chose.
But I was relieved. It wasn't Francis specifically who was categorized as unusually vulnerable, it was regular hospital protocol! Our friend Susan Christian expressed it well in an email response when I shared my concern: "What I hope is that the code business is more a piece of hospital administrative procedure than an indication of anything imminently happening. You know how they do have to cover themselves."
Our niece/nurse Jane also made two relevant points:
1) That it's "confusing" to use the expression "Hospice palliative care." Hospice in itself is a definitive 6 month stay. But Hospice also offers outpatient "treatment modalities" of dispensing palliative treatment.
2) Secondly, when she visited Francis today Jane didn't find him very highly medicated as said to us last night. She explained that high doses of narcotics make healthy people "druggies," but when used to relieve great pain those meds are readily absorbed and don't make them "druggies."
All in all I feel hopeful tonight. Not only because of what that same nurse said, -- that even people with malignant cancer can live for years with palliative treatments which also reduce pain. But because Francis seemed more himself again tonight. Maybe he's getting more used to the very medication he couldn't tolerate before he was hospitalized. By now he's totally off IV's, just on oral meds and the pain patch. They're getting him ready to come home. I eagerly await that!
Francis has it in him to live much longer. His Aunt Irene died only two months short of 105.
Elaine
It'll be serious enough within the next few days learning what the biopsy reveals. But I discovered tonight how ignorance and misinterpretation can sound a false alarm.
When Francis' nurse told us last night as we chatted a long time, that a living will was not enough to prevent a medical rescue if "something happened" to Francis, -- that we had to tell the doctor directly not to resuscitate him if that's what he wanted, my heart felt very heavy. Heavy because she repeated he was highly medicated to prevent pain, and with the side effects of that medicine, and at his age, anything could happen. I heard her say "Code 4."
So tonight when the doctor came to officially get his "advance directives," I asked her point blank: "Could you tell me honestly why Francis has been put in "Code 4 category?" She looked puzzled, - "Never heard of Code 4!" she said. Then she realized what I was alluding to, and explained that ALL patients are put BY DEFAULT into category -- "Full Code," meaning if the patient's heart stopped etc etc, they'd rush in and get it started again. The other category for all practical purposes, is "DNR," -- "Do not resuscitate."
Neither Francis, now at age 82, nor I, if I were in his shoes, would want to be resuscitated. No, not with some of us suspecting, -- but who knows... we'll know tomorrow -- maybe bone cancer? (which is very painful -- and pain is what he's dealing with.) No, in his situation, we would opt for DNR,-- as the doctor put it, -- " letting nature take its course." DNR is what he chose.
But I was relieved. It wasn't Francis specifically who was categorized as unusually vulnerable, it was regular hospital protocol! Our friend Susan Christian expressed it well in an email response when I shared my concern: "What I hope is that the code business is more a piece of hospital administrative procedure than an indication of anything imminently happening. You know how they do have to cover themselves."
Our niece/nurse Jane also made two relevant points:
1) That it's "confusing" to use the expression "Hospice palliative care." Hospice in itself is a definitive 6 month stay. But Hospice also offers outpatient "treatment modalities" of dispensing palliative treatment.
2) Secondly, when she visited Francis today Jane didn't find him very highly medicated as said to us last night. She explained that high doses of narcotics make healthy people "druggies," but when used to relieve great pain those meds are readily absorbed and don't make them "druggies."
All in all I feel hopeful tonight. Not only because of what that same nurse said, -- that even people with malignant cancer can live for years with palliative treatments which also reduce pain. But because Francis seemed more himself again tonight. Maybe he's getting more used to the very medication he couldn't tolerate before he was hospitalized. By now he's totally off IV's, just on oral meds and the pain patch. They're getting him ready to come home. I eagerly await that!
Francis has it in him to live much longer. His Aunt Irene died only two months short of 105.
Elaine
Saturday, October 3, 2009
Oct 3 Sat Whale Sightings
No Results Yet & Whale Watching
Dear Family and Friends,
The "preliminary results" of the biopsy expected yesterday did not come in! Sigh! To prepare him for coming home the nurses are using oral meds and pain patches tripled in doses now so he can be more active. Yet all he could still manage was one walk yesterday and two today.
Even if, highly medicated as he is (as niece/nurse Jane noticed when she called him, --- Francis used "slurry words," -- he hasn't lost his sense of humor. He told me when he awoke during the night he felt as if he were out at sea whale watching. His roommate's snoring (He weighs 306 pounds) reminded him of whales, or sounded like walruses. It's a story he used to cheer up over the phone a long time friend from out of state who is distraught about Francis' predicament.
Picking up a Second Hopeful Clue
Whether Francis' treatment plan will call for radiation or not, as I hope we'll learn on Monday, I just learned a second thing about palliative radiation: not only that it can offer significant relief of pain, but, as Francis' nurse told us tonight, people who get "hospice palliative radiation" can live for many years.
I'm so eager for Francis to be freed of pain enough to live a normal life. Finding relief only in a reclined position, -- even with meds !! -- is no way to live.
I DIDN'T EGGSPECT IT (as John Wirtz would say), -- But the chickie pullets laid not one but two eggs in a coop corner today! So I brought them both to the hospital to share with Francis.
Elaine
Dear Family and Friends,
The "preliminary results" of the biopsy expected yesterday did not come in! Sigh! To prepare him for coming home the nurses are using oral meds and pain patches tripled in doses now so he can be more active. Yet all he could still manage was one walk yesterday and two today.
Even if, highly medicated as he is (as niece/nurse Jane noticed when she called him, --- Francis used "slurry words," -- he hasn't lost his sense of humor. He told me when he awoke during the night he felt as if he were out at sea whale watching. His roommate's snoring (He weighs 306 pounds) reminded him of whales, or sounded like walruses. It's a story he used to cheer up over the phone a long time friend from out of state who is distraught about Francis' predicament.
Picking up a Second Hopeful Clue
Whether Francis' treatment plan will call for radiation or not, as I hope we'll learn on Monday, I just learned a second thing about palliative radiation: not only that it can offer significant relief of pain, but, as Francis' nurse told us tonight, people who get "hospice palliative radiation" can live for many years.
I'm so eager for Francis to be freed of pain enough to live a normal life. Finding relief only in a reclined position, -- even with meds !! -- is no way to live.
I DIDN'T EGGSPECT IT (as John Wirtz would say), -- But the chickie pullets laid not one but two eggs in a coop corner today! So I brought them both to the hospital to share with Francis.
Elaine
Thursday, October 1, 2009
What a blessing friends are!
Dear Family and Friends,
What a blessing friends are!
And how helpful communication technology can be!
I feel much more hopeful tonight. The input of a handful of our doctor/friends whose views I asked directly, (and a friend also asked her doctor/friend from out of state) about radiation has given Francis and me a new awareness of its potentially great benefits -- IF that's what's called for. So we are open to learning more, and it's coming soon.
Dr. Roger Inhorn told Francis today that he expects a preliminary report on Francis' second biopsy sometime tomorrow.
Francis' new pain patch has been doubled in strength so he's definitely more comfortable now though he's still more comfortable reclining. One walk to the nurse's station was enough for him today. But he looked so good tonight it's hard to believe something's going on.
I brought him some popcorn and a box of raisins tonight to help prevent a second round of constipation which the meds cause. I deliberately make extra to share at the nurse's station.
Egg # 4 & Francis and the Chickens
One of the chickens laid the fourth egg today! Ken's eyes lit up when I gave it to him and his wife Laurie Birmingham who live across the street. They're our key "chicken helpers" along with other neighbors who check on the pullets now and then to be sure all is well. Ken closes the pop door at night.
As recently as three or fewer weeks ago Francis loved to open the pop door in the morning! Even though to save him time I would pick some greens the night before, he enjoyed taking pruners out to pick extra big leaves of comfrey himself to feed to the chickies. Sometimes it coincided with my going to the bathroom. What fun to watch him bending over to stick his head into the pop door opening baby-talking the chickens on their perch to hop down and come out and play. And do they ever! They're especially frisky in the morning running and jumping and even flying inside the roomy run, and, if we didn't bring food, cackling and singing for it.
Francis gets a kick out of this, and even just watching them. One day when he was feeling down with pain he poured himself a glass of wine and sat in a picnic chair in front of the coop's run just to watch these very social, entertaining creatures.
Good night dear friends, and thank you for your prayers!
Elaine
What a blessing friends are!
And how helpful communication technology can be!
I feel much more hopeful tonight. The input of a handful of our doctor/friends whose views I asked directly, (and a friend also asked her doctor/friend from out of state) about radiation has given Francis and me a new awareness of its potentially great benefits -- IF that's what's called for. So we are open to learning more, and it's coming soon.
Dr. Roger Inhorn told Francis today that he expects a preliminary report on Francis' second biopsy sometime tomorrow.
Francis' new pain patch has been doubled in strength so he's definitely more comfortable now though he's still more comfortable reclining. One walk to the nurse's station was enough for him today. But he looked so good tonight it's hard to believe something's going on.
I brought him some popcorn and a box of raisins tonight to help prevent a second round of constipation which the meds cause. I deliberately make extra to share at the nurse's station.
Egg # 4 & Francis and the Chickens
One of the chickens laid the fourth egg today! Ken's eyes lit up when I gave it to him and his wife Laurie Birmingham who live across the street. They're our key "chicken helpers" along with other neighbors who check on the pullets now and then to be sure all is well. Ken closes the pop door at night.
As recently as three or fewer weeks ago Francis loved to open the pop door in the morning! Even though to save him time I would pick some greens the night before, he enjoyed taking pruners out to pick extra big leaves of comfrey himself to feed to the chickies. Sometimes it coincided with my going to the bathroom. What fun to watch him bending over to stick his head into the pop door opening baby-talking the chickens on their perch to hop down and come out and play. And do they ever! They're especially frisky in the morning running and jumping and even flying inside the roomy run, and, if we didn't bring food, cackling and singing for it.
Francis gets a kick out of this, and even just watching them. One day when he was feeling down with pain he poured himself a glass of wine and sat in a picnic chair in front of the coop's run just to watch these very social, entertaining creatures.
Good night dear friends, and thank you for your prayers!
Elaine
Blogspot posting problem solved
Dear All,
Anne Underwood suggested what Charlie Remy told me about from the beginning: to use www.caringbridges.com. I should have gone with that right away, but remembering the look of simplicity on the blogspot used by Mary Dunn, -- my friend who died last year, I opted for that.
Until the switch is made to caringbridges, just keep going to www.elaineandfrancis.blogspot.com . You'll be directed from there.
And thanks to those of you who emailed me with other possible solutions.
Now for more rest before visiting Francis after I pick up the winterized car.
Much loving gratitude,
Elaine
Anne Underwood suggested what Charlie Remy told me about from the beginning: to use www.caringbridges.com. I should have gone with that right away, but remembering the look of simplicity on the blogspot used by Mary Dunn, -- my friend who died last year, I opted for that.
Until the switch is made to caringbridges, just keep going to www.elaineandfrancis.blogspot.com . You'll be directed from there.
And thanks to those of you who emailed me with other possible solutions.
Now for more rest before visiting Francis after I pick up the winterized car.
Much loving gratitude,
Elaine
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