10.28.2013
10.27.2013
***** Cancer Update: The basic human decency of most of the staff in the Infirmary. Amazing.
This note is NOT about who is NOT Family to me. It is about the
unexpected, amazing, Gospel foretold insights I'm getting as to who
IS Family toward me.
A higher percentage of these otherwise homeless and penniless guys
that staff the Infirmary, and other parts of the shelter, in return
for a room, and maybe food, genuinely care about me and my
outcomes more than any other group, segment, classification... I can think
of in my life.
These are really rough dudes, with lifelong really TOUGH environments,
whose toughness, unfairness, cruelty of backgrounds I can't begin
to imagine.
"Blest are the poor." In many cases it took a good 2-3 months for them
to warm up to me - an obviously grotesquely overprivileged (ok, not in the
$$$ dept - that's gone) in education, childhood home life, elite adult
life....
Of course I made no attempts toward this warming of relationship - I just
attempted to be the Loving Brother, harsh, austere, hermitish... Brother
I attempt to be with every breath, to every one, as the need presents
itself. Nothing more, nothing less, nothing else.
But unlike school classmates, hospital staffs, prior suburban community
acquantances... it is among the poor that I find the closest to a Family
relationship, in how they react to me - the staff here, the 1 or two other
inmates here, and my sisters and brothers on the street... as a class.
Why? Why does someone raised in a drug den behave differently than
one not? What these brothers may see as deprivation in their lives, is exactly analogous
to the 'deprivation' of the child NOT born, raised, living in the drug den.
They are deprived of affloholism, leaving much more of their humanity
in tact, than we over-privileged as a group.
unexpected, amazing, Gospel foretold insights I'm getting as to who
IS Family toward me.
A higher percentage of these otherwise homeless and penniless guys
that staff the Infirmary, and other parts of the shelter, in return
for a room, and maybe food, genuinely care about me and my
outcomes more than any other group, segment, classification... I can think
of in my life.
These are really rough dudes, with lifelong really TOUGH environments,
whose toughness, unfairness, cruelty of backgrounds I can't begin
to imagine.
"Blest are the poor." In many cases it took a good 2-3 months for them
to warm up to me - an obviously grotesquely overprivileged (ok, not in the
$$$ dept - that's gone) in education, childhood home life, elite adult
life....
Of course I made no attempts toward this warming of relationship - I just
attempted to be the Loving Brother, harsh, austere, hermitish... Brother
I attempt to be with every breath, to every one, as the need presents
itself. Nothing more, nothing less, nothing else.
But unlike school classmates, hospital staffs, prior suburban community
acquantances... it is among the poor that I find the closest to a Family
relationship, in how they react to me - the staff here, the 1 or two other
inmates here, and my sisters and brothers on the street... as a class.
Why? Why does someone raised in a drug den behave differently than
one not? What these brothers may see as deprivation in their lives, is exactly analogous
to the 'deprivation' of the child NOT born, raised, living in the drug den.
They are deprived of affloholism, leaving much more of their humanity
in tact, than we over-privileged as a group.
Cancer Upate: Pain Barely Manageable today. Meds let me sleep all day. Wooohoooo.
Wow, I never, never, never... considered that a day when my pain was
manageable I'd experience as, 'Thank you Jesus!!!!!!!!' Well, that's how it is
now.
My experience of the pain and the meds interaction is that it is extremely
variable, and I can't see any explanatory pattern. Yesterday and this morning
were near unbearable, but from mid morning until now, well, I could sleep,
not being awakened by horrible shooting pain.
So far, the overall cycle has been one day bearable, next day bearable.
Will things stabilize? Get worse? Get better?
Throat pain from multiple NG tubes SEEMS TO BE GONE!!!!!!
Stomach pain is the worst, back pain can be really bad. Huh??? In the OR
as I awoke the pain I had, a 10, was, uh, BACK PAIN!!!!! What????
I'm curious, but have never thought to ask, do they, for that 5 hour operation,
hyper extend or contract the back to get a better access to the liver???
All I know is that since day 1 - day 4 back pain tended to be WORSE
than my stomach. Hmmmm. This is no longer true, stomach is always the
worse, but back can get really bad, too.
OH! And there is this MAGIC pill they gave me in a script after I left the
hospital (?), THANK GOD, that I take before every meal!!!! Barely anything
was going down without immense muscle pain all along my throat into the
stomach!?!?!?!? IT WAS AWFUL, SOOOO UPSETTING, DEEPLY
DISTRESSING. This new pill, within 5 minutes after taking it, reduces
that pain by 80-100%!!!!! My whole system, all symptoms combined, still
have me eat like the slowest of snails (no disrespect my little tiny sis and bros).
On 1/3 of the dinner I'd pre-op normally take, I've just finished, it has been
45 minutes. But, compared to where I've been these recent days,
WHO CARES!?!!?!??! A God-send.
No complaints. My existence is Heaven compared to folks in Syria, Palestine,
US Inner Cities, much of the middle east for females.........................
................................................
.......................
........
..
manageable I'd experience as, 'Thank you Jesus!!!!!!!!' Well, that's how it is
now.
My experience of the pain and the meds interaction is that it is extremely
variable, and I can't see any explanatory pattern. Yesterday and this morning
were near unbearable, but from mid morning until now, well, I could sleep,
not being awakened by horrible shooting pain.
So far, the overall cycle has been one day bearable, next day bearable.
Will things stabilize? Get worse? Get better?
Throat pain from multiple NG tubes SEEMS TO BE GONE!!!!!!
Stomach pain is the worst, back pain can be really bad. Huh??? In the OR
as I awoke the pain I had, a 10, was, uh, BACK PAIN!!!!! What????
I'm curious, but have never thought to ask, do they, for that 5 hour operation,
hyper extend or contract the back to get a better access to the liver???
All I know is that since day 1 - day 4 back pain tended to be WORSE
than my stomach. Hmmmm. This is no longer true, stomach is always the
worse, but back can get really bad, too.
OH! And there is this MAGIC pill they gave me in a script after I left the
hospital (?), THANK GOD, that I take before every meal!!!! Barely anything
was going down without immense muscle pain all along my throat into the
stomach!?!?!?!? IT WAS AWFUL, SOOOO UPSETTING, DEEPLY
DISTRESSING. This new pill, within 5 minutes after taking it, reduces
that pain by 80-100%!!!!! My whole system, all symptoms combined, still
have me eat like the slowest of snails (no disrespect my little tiny sis and bros).
On 1/3 of the dinner I'd pre-op normally take, I've just finished, it has been
45 minutes. But, compared to where I've been these recent days,
WHO CARES!?!!?!??! A God-send.
No complaints. My existence is Heaven compared to folks in Syria, Palestine,
US Inner Cities, much of the middle east for females.........................
................................................
.......................
........
..
Cancer Update: Throat pain seems gone!?! All I can do is try to survive the stomach pain these last 18 hours or so - noting else. Maybe that is lifting now briefly. Why such waves?
Cancer Update: Throat pain seems gone!?! All I can do is try to survive the stomach pain these last 18 hours or so - noting else. Maybe that is lifting now briefly. Why such waves?
10.26.2013
Cancer Update: Notes from deep in Purgatory - when your work has no support, it is worse; meds barely working, pain all over; hour hike for meds, glasses lost; what now?....
[zero energy to proof this. maybe tomorrow.]
Cancer Update: Notes from deep in Purgatory - when your work has no support, it is worse; meds barely working, pain all over; hour hike for meds, glasses lost; what now?....
It's been a Hell of a day - meds haven't touched my pain all day, extremely painful to eat, with near zero support (no Family) horrendous logistical Hell - like walking 6 blocks to get meds (felt like 16 miles, almost couldn't make it).
This is the first instant I've had the strength to get online for even a few moments.
God save us from the healers - LOL. :-( :-( They have to pretty much kill you, to save you. NO COMPLAINT.
I think I've heard that weekends are the most dangerous time to be sick - staff taking weekend off. This sure is my experience.
I had an old, 'hospital floater' (no one wants her I suspect), know it all discharge nurse / nurse in charge this morning. Her process is to deflect every problem as something that can't be solved, saying so with ridiculously transparent, fake, authority. I didn't have the energy or time to fight it, much. I did get the pain med strength doubled, requiring a new script, which of course miss zero compassion did not have faxed ahead - so the hospital driver, kept waiting an add'll hour and a half, was unwilling to wait the 20 min at the pharmacy for me to get it filled, so that was a subsequent 60 minute hike from Hell.
Oh well. Very oddly, one day is horrible, and the next seems to be better, repeat. We'll see.
Back at CCNV Infirmary clinic - staff happy to see me - nice guys mostly.
That my work, and therefore I, have near zero Family support is a huge validation of my work. In a near totally cancer ridden body of humanity, I Stand as 100% indictment to virtually all of the cancerous practices - this will gain you support from the cancer, how? ZERO regrets, recriminations.... It is what it is. It will be what it will be.
Cancer Update: Notes from deep in Purgatory - when your work has no support, it is worse; meds barely working, pain all over; hour hike for meds, glasses lost; what now?....
It's been a Hell of a day - meds haven't touched my pain all day, extremely painful to eat, with near zero support (no Family) horrendous logistical Hell - like walking 6 blocks to get meds (felt like 16 miles, almost couldn't make it).
This is the first instant I've had the strength to get online for even a few moments.
God save us from the healers - LOL. :-( :-( They have to pretty much kill you, to save you. NO COMPLAINT.
I think I've heard that weekends are the most dangerous time to be sick - staff taking weekend off. This sure is my experience.
I had an old, 'hospital floater' (no one wants her I suspect), know it all discharge nurse / nurse in charge this morning. Her process is to deflect every problem as something that can't be solved, saying so with ridiculously transparent, fake, authority. I didn't have the energy or time to fight it, much. I did get the pain med strength doubled, requiring a new script, which of course miss zero compassion did not have faxed ahead - so the hospital driver, kept waiting an add'll hour and a half, was unwilling to wait the 20 min at the pharmacy for me to get it filled, so that was a subsequent 60 minute hike from Hell.
Oh well. Very oddly, one day is horrible, and the next seems to be better, repeat. We'll see.
Back at CCNV Infirmary clinic - staff happy to see me - nice guys mostly.
That my work, and therefore I, have near zero Family support is a huge validation of my work. In a near totally cancer ridden body of humanity, I Stand as 100% indictment to virtually all of the cancerous practices - this will gain you support from the cancer, how? ZERO regrets, recriminations.... It is what it is. It will be what it will be.
Cancer Update: Very discouraged - pain meds had no effect this morning - much pain.
Cancer Update: Very discouraged - pain meds had no effect this morning - much pain.
10.25.2013
Cancer Update: MAJOR UPDATE
* Discharge tomorrow morning at 10am if current plans hold - returning to CCNV Homeless Shelter Infirmary.
From the standpoint of the surgeons the process has been a 100% success - all of the tumors were removed; good margins of healthy tissue remained separating the tumors from the liver that remained; the intervention to starve the most cancerous half of the liver of blood, to shrink it and force the healthier half to grow was a total success with the healthier half growing a good 30% or more; quality of the remaining liver appeared very very good.
* Pathology report is not back leaving the one big unknown, but looks like they may well have given me a shot at another 15 years or so to serve.
* Had great success with solid foods this morning as near as can be told. Eggs, french toast, grits, ginger ale... all went down fine if I kept the spoon size small and the pace slow. Anything at all acidic - NOPE. Peaches, OJ, nope. Now we'll see how lunch goes.
* It will be a good 8 weeks for me to recover, physically, from such a major operation. Will the infirmary take me that long? I NEED to be back in front of the Canadian Embassy, but I don't think I could physically survive it in my current state. Oh well. We'll see what the Creator has in store.
* With really powerful pain meds I feel quite well. Without, a lot of pain at my surgery site, throat, and back. My understanding is I'll be leaving with a good supply of pain meds, and written scripts for more as needed.
* I don't think anyone, anywhere, could have gotten better care than has this homeless bum.
* I see huge holes in our med system that I'll be writing up this afternoon and leaving with the team.
* Had I been a more knowledgeable patient I quite possibly could have gotten myself out of hospital three or even four days earlier. More on this in the writeup mentioned above.
* Typing proficiency is a huge indicator of mental state. Today I'm at 90% speed, accuracy. Just 2 days ago at a glacial, agonizing, near worthless 20%.
From the standpoint of the surgeons the process has been a 100% success - all of the tumors were removed; good margins of healthy tissue remained separating the tumors from the liver that remained; the intervention to starve the most cancerous half of the liver of blood, to shrink it and force the healthier half to grow was a total success with the healthier half growing a good 30% or more; quality of the remaining liver appeared very very good.
* Pathology report is not back leaving the one big unknown, but looks like they may well have given me a shot at another 15 years or so to serve.
* Had great success with solid foods this morning as near as can be told. Eggs, french toast, grits, ginger ale... all went down fine if I kept the spoon size small and the pace slow. Anything at all acidic - NOPE. Peaches, OJ, nope. Now we'll see how lunch goes.
* It will be a good 8 weeks for me to recover, physically, from such a major operation. Will the infirmary take me that long? I NEED to be back in front of the Canadian Embassy, but I don't think I could physically survive it in my current state. Oh well. We'll see what the Creator has in store.
* With really powerful pain meds I feel quite well. Without, a lot of pain at my surgery site, throat, and back. My understanding is I'll be leaving with a good supply of pain meds, and written scripts for more as needed.
* I don't think anyone, anywhere, could have gotten better care than has this homeless bum.
* I see huge holes in our med system that I'll be writing up this afternoon and leaving with the team.
* Had I been a more knowledgeable patient I quite possibly could have gotten myself out of hospital three or even four days earlier. More on this in the writeup mentioned above.
* Typing proficiency is a huge indicator of mental state. Today I'm at 90% speed, accuracy. Just 2 days ago at a glacial, agonizing, near worthless 20%.
Cancer Update: Check out scheduled for tomorrow morning, barring the unforeseen.
Cancer Update: Check out scheduled for tomorrow morning, barring the unforeseen.
From a note to key caregivers at my primary care, Unity Health Care (Steph), the Liver team at GUH, the GUH social worker:
":-) LOL. I feel 1000 times worse than before the operation. To be
expected, I think, but I didn't see it coming.
Much pain in the throat from NG Tubes, twice. Back pain? Stomach
pain.
I find that learning to be an effective patient takes a lot of learning, so
much better at it I could have been - knowing that too much pain meds
early on slows down recovery a lot, giving not one pain level readout
but one for each site, being very very very careful about re-introducing
food - not going to fast - not too much intake - not big bites....
Of course I feel hugely appreciative and well-served by the care I've
gotten from you all. I hope to have an additional 15 years to do my pitiful
little part of making the world less of the cesspool we've made of it.
The docs say tomorrow morning is when I should checkout:
1. Ms. Steph, will CCNV re-admit me even tho my 2 week ticket has
expired?
2. Ms. Joanne, can transportation be arranged?
3. Ms. Joanne, pls advise Reggie, if he can drive, that I have no winter
jacket (police threw out all my stuff last year as part of their clean the
bums off the street tactics). So, if he can layer so the car can be kept
warm?
Thanks for all you do.
James M."
From a note to key caregivers at my primary care, Unity Health Care (Steph), the Liver team at GUH, the GUH social worker:
":-) LOL. I feel 1000 times worse than before the operation. To be
expected, I think, but I didn't see it coming.
Much pain in the throat from NG Tubes, twice. Back pain? Stomach
pain.
I find that learning to be an effective patient takes a lot of learning, so
much better at it I could have been - knowing that too much pain meds
early on slows down recovery a lot, giving not one pain level readout
but one for each site, being very very very careful about re-introducing
food - not going to fast - not too much intake - not big bites....
Of course I feel hugely appreciative and well-served by the care I've
gotten from you all. I hope to have an additional 15 years to do my pitiful
little part of making the world less of the cesspool we've made of it.
The docs say tomorrow morning is when I should checkout:
1. Ms. Steph, will CCNV re-admit me even tho my 2 week ticket has
expired?
2. Ms. Joanne, can transportation be arranged?
3. Ms. Joanne, pls advise Reggie, if he can drive, that I have no winter
jacket (police threw out all my stuff last year as part of their clean the
bums off the street tactics). So, if he can layer so the car can be kept
warm?
Thanks for all you do.
James M."
10.24.2013
Cancer Update: Big setback. My body is physically rejecting solid food. More tomorrow am.
Cancer Update: Big setback. My body is physically rejecting solid food. More tomorrow am.
Children of the Creator Love Everything the Creator has Created. Those who do not, are not.
Children of the Creator Love Everything the Creator has Created. Those who do not, are not.
Well, friends, I am starting to get back on FB and email. Please have extremely low expectations.
Well, friends, I am starting to get back on FB and email. Please have extremely low expectations.
It does not matter what happens to me. All that matters is that there be infinitely more Loving in the world.
It does not matter what happens to me. All that matters is that there be infinitely more Loving in the world.
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