Check in time again Sept 28 2021 - Starting new thread for this

Posted by reibur1951 @reibur1951, Sep 28, 2021

He will be going for simulation for his 6th set of 10 radiation treatments on Oct 5th

He has been helping more the last 3-4 weeks on clean up of the 5.3A tho I have had to go back over the dirt piles to get all the copper wire & metal out of them.

He will be starting 5th year on Oct 25th

metastatic SqCC of the Lung (Stage IVB i have seen one some reports) His weigh is bouncing between 6468 Kg. but 64kg seems to be the consistent figure for the year. In the face he is getting to look like his dad did in his last months of his life/diastase of not making Red Blood Cells.

Treatment History:
Carboplatin/Abraxane/Pembro x 4, followed by Pembro maintenance (HCRN 13-175 trial)- PD
Docetaxel/Pembro x 2 (HCRN 15-029 trial)- PD
Palliative XRT to right neck- completed 5/2019
Pembrolizumab alone- PD
PD-1 inhibition Plus IDO Inhibitor (JZCA phase I clinical trial)- PD
Palliative XRT to left axilla
Pembrolizumab alone- PD
Gemcitabine alone x 3, then combined Carbo/Gem x 2- PD
Palliative XRT to lesions over left upper back
Nivolumab/Ipilimumab x 3 cycles- PD and pneumonitis
Additional palliative XRT to left upper back/left flank/left chest wall
Palliative XRT left axilla

By Ct's on 9/23/2021 All the lymph nodes seemed to have enlarged since 7/15/2021.
CT Chest IMPRESSION:
There is thoracic spine endplate degenerative change
1. Increased conspicuity of suspected soft tissue lesions within the left anterior chest wall on image 42 and right shoulder musculature on image 23, concerning for metastatic deposits.
2. Redemonstration of bilateral axillary lymph nodes and/or lesions. Right axillary findings are stable to slightly increased. Left axillary lesion is decreased in size.
3. Stable 8 mm left lower lobe nodule.
4. Slightly increased size of an 11 mm prevascular lymph node on image 28. Similar 13 mm subcarinal lymph node. Recommend attention on follow-up imaging.
5. Emphysema with scattered bilateral parenchymal scarring and bronchial mucus inspissation.
6. Coronary artery plaque.
7. Supraclavicular adenopathy. CT neck and nasopharynx dictated separately.
CT Neck and Nasopharynx MPRESSION:
1. Enlarging metastatic deposits within the left lower neck and posterior paraspinal muscles are consistent with progressive disease.
2. Right axillary adenopathy is not fully included in the field-of-view. Please refer to the dedicated CT chest for additional details.
3. Additional findings include atherosclerosis, mandibular periodontal disease and cervical spine degenerative changes.

Clean up is at a stand still for now as the Bobcat motor all but died friend been helping me the last 2-3 years has pulled the motor out of it trying to find a refurbished one or good used one but wonder if its worth the $$ there is some left to do but I am discouraged at this point since the bobcat is all that we have had to work with to scrape, lift, pull and clean with Beginning to wonder if it is worth it

Before it completely went down friend with lung cancer was helping going through the dirt piles for metal & copper but I had to go over the last 2-3 weeks- he was mowing the yard more than he had been the last couple of months -Not sure what got into him and whether he continues to mow it like he has been this fall will be debatable – but i got a mower I can use/run and mow with

After his radiation treatments are over I will see about hand loading all the metal we have piled up and hauling in my truck – unless can find someone to help

I had hoped for a consignment auction but 1 never answered the 2 wanted to come pick what they wanted so I have a mess of just not wrapping back down properly – so repacking and stacking boxes against wall in trailer – so I will probably end up going back through and re-sorting and decide what I want to keep for yard/ garage sale or eBay – I actually have enough for a collectible store – but not confident enough and Culver really needs another specialty store

Have been cleaning my collectible/antique furniture and about done with that – been taking to house as i get it done – the heaviest stuff is out of here and awaiting my arrival

Ordered my bed Jun 27 – but it won't be here till around Dec 1st could be later – had to be difficult and order an Amish handmade Bow Sheaf bed for Shipshewana furniture – ordered my mattress (Nectar) a few days and it already arrived today – took it up and left it in the box for now says 2 more boxes – sheets & bedding items that were to be free.

I scrubbed/sanded down and old Tell City rocker did not refinish it – bought a cushion for it – have a glider rocker goign to wash down & get a cushion for it – I bought a chair from a firend over 3 years ago – so that will be all the furniture I will have – I got to get up and finish stripping down the piano and get it out of middle of living room. – Its box heaven at the house and will be living out of boxes for a very long time – no book cases or shelving – I stripped down some desk drawers of 2 desk wings i had plywood over for my computer desk here – my friend who been helping me made a new top for it and I poured and acrylic bar top finish on it – I got a new computer/desk chair Saturday from my Classmates for all my hard work on our reunion we had our 50th/51st reunion from High School and I done all the work of invitation and a booklet for that

My friend alspo during that very hot humid weather in late July-August decided I had to have the black dirt hauled in and done – so had a culver neighbor haul th bobcat up there and we done that – had to scrape out over 4 inches of sand in order to laid down 4 inches of good black dirt then he dug down in where the former carport area was and buried the sand that we could not give away, layered the dirt he dug out over it and then put a thin layer of good black dirt over it. So that s done – but not got the bill for the 3 loads of good black soil as yet. Over did but it got done and took while to recover from that.

Friend covered all the windows with heavy plastic and goign to try to stay here as long as possible till I get things sorted out again and moved to basement. There is just to much to walk off with – and Figure out how to secure things down and drain the plumbing so it will not freeze

Of course his sisters could give a rats-ass in hell – 2 have never called all these 4 years – and the youngest only calls when she want some information but have gotten use to that tho it still sticks in my craw that they could care less about their brother.

I keep praying for a miracle of some sort – Things just have to work out somehow

Interested in more discussions like this? Go to the Lung Cancer group.

@reibur1951

Seen the new Radiologist on Dec 15th was to have been the 13th but no one called appointment was scheduled (across town at Methodist I.U.); simulation for the brain focal/gamma-knife was on the 17th the Nurse finally called several days later and a dollar short wanting to coordinate all of the above she could not understand that all had been coordinated by the new radiologist and the oncology department at Simon Cancer.

My opinion is he is not doing good at all unsteady on his feet walks as if he is walking on broken glass, memory problems, eating but not eating, think he has new swollen lymph nodes on his chest below the radiation area and there looks to be one large on his right upper arm (bicep). Coughs, gags a lot seems to have an excessive amount of phlegm told the dr bo blood only white – have no way of knowing. Still gets around a week ago it took a good 15 minutes for him to thread his belt through the loops on his pants.

Has radiation treatments till Jan 7th

Just hanging in hoping.

Merry Christmas to all and Happy New Year

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Happy Holidays to you as well.

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He finished his radiation – on Jan 7th – DO not think it done as good this time – only thing that's shrank significantly is the lymph node tumor on his left arm – kept the ones on chest from bursting open – have maybe shrank a little – The one on his back upper shoulder is about the same size as when started – plus there are new ones One just off of the one on his back upper shoulder near the neckline, one small one developing on the left shoulder blade midway again :-); and some low mid strunam that was out of radiation zone area and a smaller one up higher on the left front. The Brain lesions not sure of the gamma-knife was done on them but no report or follow-up as yet.

Follow-up for radiation treatment of the lymph node tumors is on Feb. 3rd

Went to Dr. today to blood work and comparison point – as starting him on Capecitabine / Xeloda something he has not been on and because he has exhausted all lung cancer chemo drugs/immunology – and something about the Genetic he done back in 2018 (I think) showed it could possibly help – 3 capsules 2 times a day. for 2 weeks and off one week – go back for follow-up blood work on Feb 7th

He is losing weight roughly 3 lbs since Dec 1st

He is looking a lot like his dad did in the last months of his life 🙂

Tired been long day – i came home and crashed – going to take hot bath and back to bed and laptop.

Hoping I can get some things done this made the 20th trip to Indy since Nov. 30th besides the 10-15 that were in October and with hurting my back Oct 16th trying to do stuff at new house but still had to carry on as was just the end of beginning week of that treatment schedule for him Its been a rough fall – with not being able to get things accomplished here – the Bobcat went down and was down from rd week in Sept to end of near end of October during all the nice warm days when things could be accomplished.

At least we are missing the horrid winter storms which is nice – i know some are complaining – I hope it continues I want to get things done here and at new house.

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@reibur1951

He finished his radiation – on Jan 7th – DO not think it done as good this time – only thing that's shrank significantly is the lymph node tumor on his left arm – kept the ones on chest from bursting open – have maybe shrank a little – The one on his back upper shoulder is about the same size as when started – plus there are new ones One just off of the one on his back upper shoulder near the neckline, one small one developing on the left shoulder blade midway again :-); and some low mid strunam that was out of radiation zone area and a smaller one up higher on the left front. The Brain lesions not sure of the gamma-knife was done on them but no report or follow-up as yet.

Follow-up for radiation treatment of the lymph node tumors is on Feb. 3rd

Went to Dr. today to blood work and comparison point – as starting him on Capecitabine / Xeloda something he has not been on and because he has exhausted all lung cancer chemo drugs/immunology – and something about the Genetic he done back in 2018 (I think) showed it could possibly help – 3 capsules 2 times a day. for 2 weeks and off one week – go back for follow-up blood work on Feb 7th

He is losing weight roughly 3 lbs since Dec 1st

He is looking a lot like his dad did in the last months of his life 🙂

Tired been long day – i came home and crashed – going to take hot bath and back to bed and laptop.

Hoping I can get some things done this made the 20th trip to Indy since Nov. 30th besides the 10-15 that were in October and with hurting my back Oct 16th trying to do stuff at new house but still had to carry on as was just the end of beginning week of that treatment schedule for him Its been a rough fall – with not being able to get things accomplished here – the Bobcat went down and was down from rd week in Sept to end of near end of October during all the nice warm days when things could be accomplished.

At least we are missing the horrid winter storms which is nice – i know some are complaining – I hope it continues I want to get things done here and at new house.

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I bet that you are tired! Has the doctor asked him if he wanted to stop all treatments and just have medications that will keep him comfortable? I guess that I don't understand exactly what his doctor's intentions are and what he wants.

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@merpreb

I bet that you are tired! Has the doctor asked him if he wanted to stop all treatments and just have medications that will keep him comfortable? I guess that I don't understand exactly what his doctor's intentions are and what he wants.

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Yes am tire – even tho I did nothing all day Sunday and I only got up long enough to eat some oatmeal and give him his medication but was up by noon. He has had 8 not 7 radiation treatments, my mistake I lost count, was counted on the clinical report from yesterday that I pulled down and will full read – its a synopsis of the full 5 years. – – I am beginning to think it is time for comfort care as he does not want to do anything but sit in front of TV – I know he does not have the strength nor the stability he has had – He has put up a good fight – See what this round of Chemo does or doe not do

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@reibur1951

Yes am tire – even tho I did nothing all day Sunday and I only got up long enough to eat some oatmeal and give him his medication but was up by noon. He has had 8 not 7 radiation treatments, my mistake I lost count, was counted on the clinical report from yesterday that I pulled down and will full read – its a synopsis of the full 5 years. – – I am beginning to think it is time for comfort care as he does not want to do anything but sit in front of TV – I know he does not have the strength nor the stability he has had – He has put up a good fight – See what this round of Chemo does or doe not do

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Reibur- Does he want to go through with this next round of chemo? If he's weak he will become more so, right? Maybe his quality of life, for whatever time he has left will be better with palliative care, or hospice. He doesn't have to be knocking on death's door to have hospice.

What do you think?

Merry

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Radiation was over on the 7th of January… Follow-up was scheduled on the 3rd cancelled because of bad weather was on the 15th Personally did not do as good as last in the chest area – there are new tumors/lumps the ones there have not gone down as well as before – only one that did was on his left arm above elbow – the large one on the right back shoulder blade really looks about the same and he got a new one up near the neckline on the same side its so far remained about the same – the ones in the chest area around the sternum have surfaced and enlarged.

The Gama-knife seems to have helped for the brain lesion – but have not heard fully on it but he is acting somewhat better mentally.

Radiologist did not push for another round of radiation – ( there was 10 days in Oct and the 19 days in Dec. & January) – – I told him if he pushed for to refuse – as I really think needs a break since this last session of treatment has not proven any positive results of shrinking the tumors this time except for the one on arm and one in the left armpit which was not very big. One on his left chest area is now almost the size of a silver dollar or large and has broke open and continue to do so – I have some salve left given for the one that exploded in the left armpit in Dec/Jan of 2020 and been keeping bandage for couple days after it opens up and then uncover and let open to fully air dry up – – hardest thing is to get him to take a full bath with some skin-so-soft to prevent the dry skin syndrome from the Capecitcabine he says he does but since he does not wash down the tub after use I know he is not doing it – I am not fighting with him over it – there is no use.

On January 18th he started pill chemo Capecitcabine – on for 14 days 3 tablets breakfast & Supper and off 7 days

Capecitabine (Xeloda) is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Capecitabine is classified as an "antimetabolite." Tho not used widely for Lung Cancer – – it was an option due to something in the Genetic Profiling that was done in late 2018 or in 2019 since he has exhausted all normal chemo/immunology drugs. There may be a chance of a new clinical study.

He is on his 2nd round the the treatment

Back on Feb 28th for routine blood tests and dr. visit. Next visit will be March 21st I assume and talk of CT Scans to see what the progression is if good or bad. –

Bed still not arrive – was up and laid down some area rugs in dining area under the oak dining room table & for under bar stools; got a couple of bar stools last month and refinished them – my hands were raw – for about a week but for $20 for the two and about $80 for the stripper/refinisher bet the 500-600 for 2 I found and were really to dark for my taste but were all wood. Bobcat went down again and hoping this round will do it – its a muddy mess out in the 5.3a so not much can do but intent is to finish cleaning this place up and be out of here whether he likes it or not – he will not help clean-up after himself – he feeds the dog and throws the un-rinsed cans into the sink – now but still not acceptable as have new stainless steel sink – messy with making coffee etc. about to point I can break my promise to his parents 🙁 when things are done here.

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The brain lesions seem to be stable for now the gamma-knife (one day on same day of other radiation in December) done some good The MRI on the 8th of March was good report

MRI Impression: Decreased size of the previously noted right temporal and frontotemporal metastatic lesions with resolution of surrounding vasogenic edema consistent with posttreatment changes. No new or enlarging intracranial metastatic lesions are identified.

to be repeated on June 7th

The last 19 days of radiation was wasted time and effort i feel as all the lymph node tumors are growing in the chest area – its a mess bursting open draining – others are growing in side and the one on right shoulder blade still large – not sure if growing or not but has not busted open so far guess that is a good sign the small one at the clavicle/neck area has grown and looks as if can bust open. The one on the big one that was on the left arm above elbow decreased in size hut has erupted again as there is a nickel to quarter grow in it again – must of missed that area with the radiation The Ct's of the 21st confirmed

CT Neck and Nasopharynx IMPRESSION:
1. Progressive nodal, cutaneous/subcutaneous, osseous and myofascial metastatic disease, as detailed.
2. The previously described intracranial disease has improved,correlating to the 3/8/2022 MRI brain.

Chest CT IMPRESSION:
1. Interval increase in neoplastic disease burden with increased size of multiple masses and nodules of the anterior chest wall, right upper extremity, mediastinum, and to a lesser extent bilateral lungs.Associated worsening osseous erosion of the sternum and left first and second ribs.

Picked up the Capecitabine (Xeloda) on 21st in case start 3rd round of it – but was told to hold off till called pending full reading of the CT's – called yesterday morning and told not to start it 🙁

Dr. is looking into options and a possible clinical study but did not seem likely –

Me I am hanging in – friend and I got the one biggest eyesore – project down and not out of the way yet it was an aluminum semi reefer its been an immense challenge it was up on blocks not wheels/axles under it and less than 3 feet from the pole barn/garage – but it fully down on the ground without doing damage to the pole barn/garage

My bed arrived on the 17th of March finally was to been delivered on the 28th of Feb but had to be in Indy for the follow-up of the 1st round of chemo pills and pick up 3 the 2nd round

Keep plugging along – been raining, damp and today is on chilly side and to be colder as the rest of week progresses but work as can out doors on stuff cleaning up – can not give up on it Can not afford to hire it done and whoever walk off with all the scrape & money from it – at times wonder if it is worth all the effort but has paid for the clean-up appliances and other things

I have ordered the "bunkie boards" for the slats are to wide apart – the "bunkie boards" will go on top horizontal – got grass seed coming – got to find some erosion mats to cover it when planted.

Taxes are done and written out to send on on April 15th did not have much left – but that is the way it goes – Bobcat been down since Sept 23rd and had to buy new motor and other things for it – but it is the only thing we have to push, dig, haul etc with.

Just tying my best and to stay positive. Wishing that a pot of gold will show up hahahahahahaha

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@reibur1951

The brain lesions seem to be stable for now the gamma-knife (one day on same day of other radiation in December) done some good The MRI on the 8th of March was good report

MRI Impression: Decreased size of the previously noted right temporal and frontotemporal metastatic lesions with resolution of surrounding vasogenic edema consistent with posttreatment changes. No new or enlarging intracranial metastatic lesions are identified.

to be repeated on June 7th

The last 19 days of radiation was wasted time and effort i feel as all the lymph node tumors are growing in the chest area – its a mess bursting open draining – others are growing in side and the one on right shoulder blade still large – not sure if growing or not but has not busted open so far guess that is a good sign the small one at the clavicle/neck area has grown and looks as if can bust open. The one on the big one that was on the left arm above elbow decreased in size hut has erupted again as there is a nickel to quarter grow in it again – must of missed that area with the radiation The Ct's of the 21st confirmed

CT Neck and Nasopharynx IMPRESSION:
1. Progressive nodal, cutaneous/subcutaneous, osseous and myofascial metastatic disease, as detailed.
2. The previously described intracranial disease has improved,correlating to the 3/8/2022 MRI brain.

Chest CT IMPRESSION:
1. Interval increase in neoplastic disease burden with increased size of multiple masses and nodules of the anterior chest wall, right upper extremity, mediastinum, and to a lesser extent bilateral lungs.Associated worsening osseous erosion of the sternum and left first and second ribs.

Picked up the Capecitabine (Xeloda) on 21st in case start 3rd round of it – but was told to hold off till called pending full reading of the CT's – called yesterday morning and told not to start it 🙁

Dr. is looking into options and a possible clinical study but did not seem likely –

Me I am hanging in – friend and I got the one biggest eyesore – project down and not out of the way yet it was an aluminum semi reefer its been an immense challenge it was up on blocks not wheels/axles under it and less than 3 feet from the pole barn/garage – but it fully down on the ground without doing damage to the pole barn/garage

My bed arrived on the 17th of March finally was to been delivered on the 28th of Feb but had to be in Indy for the follow-up of the 1st round of chemo pills and pick up 3 the 2nd round

Keep plugging along – been raining, damp and today is on chilly side and to be colder as the rest of week progresses but work as can out doors on stuff cleaning up – can not give up on it Can not afford to hire it done and whoever walk off with all the scrape & money from it – at times wonder if it is worth all the effort but has paid for the clean-up appliances and other things

I have ordered the "bunkie boards" for the slats are to wide apart – the "bunkie boards" will go on top horizontal – got grass seed coming – got to find some erosion mats to cover it when planted.

Taxes are done and written out to send on on April 15th did not have much left – but that is the way it goes – Bobcat been down since Sept 23rd and had to buy new motor and other things for it – but it is the only thing we have to push, dig, haul etc with.

Just tying my best and to stay positive. Wishing that a pot of gold will show up hahahahahahaha

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Hello @reibur1951, it's good to hear from you again. It sounds as if the work on your land is going slow, but you are making some progress and that is good.

It sounds as if your friend is still struggling with his cancer. How is he feeling? Does he have much pain at this point?

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@hopeful33250

Hello @reibur1951, it's good to hear from you again. It sounds as if the work on your land is going slow, but you are making some progress and that is good.

It sounds as if your friend is still struggling with his cancer. How is he feeling? Does he have much pain at this point?

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He complains of a 10 at Dr office but does not take anything – does not complain at home He sits around mostly and watch TV – does a little but not much – so its just one day at a time

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Dr did not continue the Capecitabine (Xeloda) But was considering him for another clinical study "NP-G2–044 as Monotherapy and Combination Therapy in Patients with Advanced or Metastatic Solid Tumor Malignancies" he consented – Verbally on Mar 28th but new Ct's of chest, abdominal etc had to be done – finally got testing set up for yesterday (April 15th) but from the last appointment on Mar 21st he has went down hill rapidly – by time the clinical nurse confirmed the testing appointments he was to the point where i thought and believed that the study would not be beneficial to him – more harm and a waste of time, money etc for the study and would benefit to another – I asked that he be seen by his oncology Dr. before testing done – this week he went don rapidly refusing to eat – he would take the food but pass it off to the dog or outside cats. – Sleeping 16-18 hours or more and not moving around only to go to bathroom or to go get coffee or milk.

The radiology department called to confirm we were coming for cts. etc. which were on hold – wires crossed and oncology nurse had put them on hold – so I called to let her know that she should re-contact them and make sure they were still on hold just in case – I explained what was going on and told her that I wanted him admitted yesterday –

Dr confirmed and went along with my conclusions and views – he is now in IU University Hospital I came home at least for today to wrap up some things that need to be done – his heart rae on o2 was good but bp 70/57 and weight down to 107 – So

He is " admit him to the hospital for IVF (Intravenous Fluid) and likely placement to a nursing
home. If he declines rapidly, he may even become a candidate for inpatient hospice. Of note, I also discussed code status, and he is in agreement with being DNR/DNI"

SO today this is where we stand – a called a couple hours ago talked to nurse – said he was hard to understand and a riddle – – so it does mot sound good – sounds in my mind he will not be leaving University hospital but I could be wrong –

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@reibur1951

Dr did not continue the Capecitabine (Xeloda) But was considering him for another clinical study "NP-G2–044 as Monotherapy and Combination Therapy in Patients with Advanced or Metastatic Solid Tumor Malignancies" he consented – Verbally on Mar 28th but new Ct's of chest, abdominal etc had to be done – finally got testing set up for yesterday (April 15th) but from the last appointment on Mar 21st he has went down hill rapidly – by time the clinical nurse confirmed the testing appointments he was to the point where i thought and believed that the study would not be beneficial to him – more harm and a waste of time, money etc for the study and would benefit to another – I asked that he be seen by his oncology Dr. before testing done – this week he went don rapidly refusing to eat – he would take the food but pass it off to the dog or outside cats. – Sleeping 16-18 hours or more and not moving around only to go to bathroom or to go get coffee or milk.

The radiology department called to confirm we were coming for cts. etc. which were on hold – wires crossed and oncology nurse had put them on hold – so I called to let her know that she should re-contact them and make sure they were still on hold just in case – I explained what was going on and told her that I wanted him admitted yesterday –

Dr confirmed and went along with my conclusions and views – he is now in IU University Hospital I came home at least for today to wrap up some things that need to be done – his heart rae on o2 was good but bp 70/57 and weight down to 107 – So

He is " admit him to the hospital for IVF (Intravenous Fluid) and likely placement to a nursing
home. If he declines rapidly, he may even become a candidate for inpatient hospice. Of note, I also discussed code status, and he is in agreement with being DNR/DNI"

SO today this is where we stand – a called a couple hours ago talked to nurse – said he was hard to understand and a riddle – – so it does mot sound good – sounds in my mind he will not be leaving University hospital but I could be wrong –

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It sounds as if your journey with him is coming to an end. You have been incredible to have stayed by his side all of these years with no help from his family at all. You really deserve an award. I can imagine very opposite feelings going through your mind after all this time.

Please give yourself time to heal after this is all over as you were as much a patient/victim of his family as he was.

Merry

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I do not think eiter as morning blood test were not good – besides the ones several weeks ago taken fot the chemo to keep track

As soon as I finish some things here at home I am headed back feel guilty for coming home but was not sure what was going to go down and I got one meet with local funeral home to make arrangement for when that comes around yeah that's on my shoulders to as it was with his mom and dad

They will all pay for it wone day – – the youngest sister just recently divorced her husband – the oldest sisters h usban has prostrate cancer from what i was told

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