Check in time

Posted by reibur1951 @reibur1951, Oct 17, 2020

Sorry been busy cleaning the 5.3A, cutting up & stacking the maple trunks from the Culver house, trying to keep atop of the re-build which is at a slow pace; got the 64A up for sale to cover the cost of the rebuild & hoping it sells before the end of year; trips to Indy every 2 weeks now

The radiation treatments (11 this round, the 3rd) helped the ones on his back BUT the tumor or blisters traveled under the left armpit to the front left chest and on on his very upper left arm just above the armpit ares.

Sad news is no new clinical studies for now and also down to the last treatment option has had all the recomended

Opdivo/Nuikynmab & Yervoy/Ipilimumab He gets both one week and just one of the 2 the second week He has had 2 infusions 2 weeks ago the 2 together and yesterday just the one; the have switched days starting on the 26th to Wednesdays not Fridays.

So far he is doing good on the them.

He had a CT scan when he started 2 weeks ago – its a very different format and does not c over all in wording the previous ct's of the last 3 years did… Dr. did not confer with me yesterday so do not know what was actually said and not said – the jest of the CT report is things are "stable"

Left yesterday with no appointment times so have to go in see if they set up the appointments for labs/dr/infusion for the 36th or when – its either Monday or Wednesday the nurse assigned him is not like our "Maggie" we had when we started this all Oct 25, 2017… three years down starting on the 4th….

The re-build is 2-3 months behind – have a basement – temporary electric in; the floor system has arrived and told the truses will not be there till mid-November.

Beginning to think I should of not started the house rebuild – I will either make it or loose everything unless the loan officer adds an extension or the 54A sells I am hoping for the latter as I am very unhappy over the loan officers lack of communication dragging his feet from April 28 to June 24 (the construction company was ready to start in May & June) If started by/in June was called to be 6 months was a move in by/before Christmas now I am not looking for early or late spring now; alos building materials have doubled and tripled putting doubt on the estimate given which was not full covered by my savings and the loan so it is a sink or swm situation right now – have had many sleepless nights over this.

Check in time Mar 19th – They have stopped the immunology the last being YERVOY® (ipilimumab) & OPDIVO® (nivolumab) he has had all t he standard chemo and immunology drugs and been through 3-4 clinicals – a suggestion was possible clinicals in Chicago but he refused CT showed New parenchymal infiltrate left midlung, Mediastinum and soft tissues. several less than 1 cm maximum short axis diameter anterior carinal nodes Lungs. Emphysema. Stable of atelectasis apical segment right upper lobe.Stable 1 cm nodule in the region of the apical segment bronchus New subsegmental right middle lobe and right lower lobe groundglass infiltrates. New anterior segment left upper lobe mixed groundglass and consolidative infiltrates. Similar findings seen in the lingula and left lower lobe. These findings may represent infection versus radiation changes. No new nodules or masses. Central airways normal. His cough is about the same – they put him on 60mg of prednisone for 21 days – next visit is APril 8th via phone

House coming along – changed realtors & companies on Tuesday (16th) as other was up – she raised the price and had 7 calls from Tuesday to yesterday – 2 yesterday when I was with her and we took one to look at it. Think made right choice dumping the other – she thinks it could sell very soon at this rate.

Clean-up of the 5.2A still going on seems endless things keep popping up out of ground – down to 2 storage trailers, a tractor; and 3 vehicles and miscellaneous tin/shred stuck every where – 10 dumpsters of metal out, 8 of trash besides what we burnt – and no friend with lung cancer does not help have a friend who has come up from Indy to help was friends with his father – without him i think i would of gave up and walked away letting it go for back taxes… still may end up walking away after get most of the bigger stuff hauled out – its extra money for furniture, appliances etc. but it should be sellable – in fact the one contractor of the culver house is interested in it or was.

REPLY
@reibur1951

Check in time Mar 19th – They have stopped the immunology the last being YERVOY® (ipilimumab) & OPDIVO® (nivolumab) he has had all t he standard chemo and immunology drugs and been through 3-4 clinicals – a suggestion was possible clinicals in Chicago but he refused CT showed New parenchymal infiltrate left midlung, Mediastinum and soft tissues. several less than 1 cm maximum short axis diameter anterior carinal nodes Lungs. Emphysema. Stable of atelectasis apical segment right upper lobe.Stable 1 cm nodule in the region of the apical segment bronchus New subsegmental right middle lobe and right lower lobe groundglass infiltrates. New anterior segment left upper lobe mixed groundglass and consolidative infiltrates. Similar findings seen in the lingula and left lower lobe. These findings may represent infection versus radiation changes. No new nodules or masses. Central airways normal. His cough is about the same – they put him on 60mg of prednisone for 21 days – next visit is APril 8th via phone

House coming along – changed realtors & companies on Tuesday (16th) as other was up – she raised the price and had 7 calls from Tuesday to yesterday – 2 yesterday when I was with her and we took one to look at it. Think made right choice dumping the other – she thinks it could sell very soon at this rate.

Clean-up of the 5.2A still going on seems endless things keep popping up out of ground – down to 2 storage trailers, a tractor; and 3 vehicles and miscellaneous tin/shred stuck every where – 10 dumpsters of metal out, 8 of trash besides what we burnt – and no friend with lung cancer does not help have a friend who has come up from Indy to help was friends with his father – without him i think i would of gave up and walked away letting it go for back taxes… still may end up walking away after get most of the bigger stuff hauled out – its extra money for furniture, appliances etc. but it should be sellable – in fact the one contractor of the culver house is interested in it or was.

Jump to this post

@reibur1951– Hello and good morning! It sounds as if you have been pretty busy! It sounds like your friend has made some serious decisions. Not knowing how he is doing, like walking or getting out of the house it's difficult to know what to ask. Is it time for hospice?

REPLY
@reibur1951

Check in time Mar 19th – They have stopped the immunology the last being YERVOY® (ipilimumab) & OPDIVO® (nivolumab) he has had all t he standard chemo and immunology drugs and been through 3-4 clinicals – a suggestion was possible clinicals in Chicago but he refused CT showed New parenchymal infiltrate left midlung, Mediastinum and soft tissues. several less than 1 cm maximum short axis diameter anterior carinal nodes Lungs. Emphysema. Stable of atelectasis apical segment right upper lobe.Stable 1 cm nodule in the region of the apical segment bronchus New subsegmental right middle lobe and right lower lobe groundglass infiltrates. New anterior segment left upper lobe mixed groundglass and consolidative infiltrates. Similar findings seen in the lingula and left lower lobe. These findings may represent infection versus radiation changes. No new nodules or masses. Central airways normal. His cough is about the same – they put him on 60mg of prednisone for 21 days – next visit is APril 8th via phone

House coming along – changed realtors & companies on Tuesday (16th) as other was up – she raised the price and had 7 calls from Tuesday to yesterday – 2 yesterday when I was with her and we took one to look at it. Think made right choice dumping the other – she thinks it could sell very soon at this rate.

Clean-up of the 5.2A still going on seems endless things keep popping up out of ground – down to 2 storage trailers, a tractor; and 3 vehicles and miscellaneous tin/shred stuck every where – 10 dumpsters of metal out, 8 of trash besides what we burnt – and no friend with lung cancer does not help have a friend who has come up from Indy to help was friends with his father – without him i think i would of gave up and walked away letting it go for back taxes… still may end up walking away after get most of the bigger stuff hauled out – its extra money for furniture, appliances etc. but it should be sellable – in fact the one contractor of the culver house is interested in it or was.

Jump to this post

@reibur1951

Always good to hear from you with an update. How is your friend's breathing? Does he use oxygen on a regular basis?

Glad to know that your property is getting some action. With spring on the way, folks might be thinking about buying land and building.

Does your friend have you listed as his patient advocate at this point?

REPLY

Mary / Teresa he is not on oxygen as yet – he does still move around on his own – the getting off immunology was the Dr.s (Simon Cancer Center) choice he did suggest maybe Chicago and that they had newer clinical studies; I think his memory function has been affected as he does weird things – you have to keep repeating and getting were you have to spell everything out getting where i think i need a drawing pad and color pencils but i do not draw worth a _ ; he is much slower at riding his bike i notice down to the country store – but he won't admit to anything He mostly sits and watches TV – unless pushed – its as if he does not give a dam about anything – even keeping warm unless he can freely plug the kerosene salamander in and run it 24/7 thank goodness there is enough cracks in the place. He even leaves the top damper wide open as well as damper on the front electric blower and I have even caught him several times walking off leaving the furnace door wide open. The last month I have went to bed and said the hell with firing the furnance at 12-2-4-6 as he does not even attempt to help with that if he does fill it it he stuffs it so full ther is no air around the wood to burn – leaves both dampers open and by time I catch it it is totally burnt out of if not its smoldering and i have to fight to unpack it and through the wood out on to the floor to re-stiock it

REPLY
@reibur1951

Mary / Teresa he is not on oxygen as yet – he does still move around on his own – the getting off immunology was the Dr.s (Simon Cancer Center) choice he did suggest maybe Chicago and that they had newer clinical studies; I think his memory function has been affected as he does weird things – you have to keep repeating and getting were you have to spell everything out getting where i think i need a drawing pad and color pencils but i do not draw worth a _ ; he is much slower at riding his bike i notice down to the country store – but he won't admit to anything He mostly sits and watches TV – unless pushed – its as if he does not give a dam about anything – even keeping warm unless he can freely plug the kerosene salamander in and run it 24/7 thank goodness there is enough cracks in the place. He even leaves the top damper wide open as well as damper on the front electric blower and I have even caught him several times walking off leaving the furnace door wide open. The last month I have went to bed and said the hell with firing the furnance at 12-2-4-6 as he does not even attempt to help with that if he does fill it it he stuffs it so full ther is no air around the wood to burn – leaves both dampers open and by time I catch it it is totally burnt out of if not its smoldering and i have to fight to unpack it and through the wood out on to the floor to re-stiock it

Jump to this post

@reibur1951– You certainly have been wonderful to him. I wish that you could get his family involved!

REPLY

They do not want to be involved – they would of had him in a half-way house or nursing home – the sister and her husband informed me last fall they were not taking off work to help take him down to Indy – hell I already knew that when they would not do it for her dad or while he dad was alive iand I had them both from Oct. 2017-Jun 2018 the dad for transfusion in Plymouth only 25-30 on tuesdays and son/brother in Indy on Fridays every week & every 3 weeks we had to go for a CT to Indy And he thinks he can get anyone to drop everything and take him to INdy for nothing and spen 5-12 hours on orad & at the center and [ possibly at the last minute ( less than days notice) or go all the way down there only to have them cancel the appointment within 1/2 hour of the appointment – as happened was getting ready to pull into parking garage. Oh well they ha ve to live with themselves.

REPLY

YERVOY® (ipilimumab) & OPDIVO® (nivolumab) immunology was stopped in March; here are no new clinical studies and he has exhausted all the chemo & immunology drugs used to treat Lung cancer – put him on 60 mg prednisone for cough & what was possible infection shown on the ct scan of March 17, for a month and then graduated him off of it The Ct scan of May 12 Described as ", history of poorly differentiated stage IVb squamous cell carcinoma of the right upper lobe with nodal spread to the left cervical and axillary lymph nodes." and has 3 new – not yet showing above the skin : "Growth of the bilateral axillary centrally-necrotic lymph
nodes measuring 4.0 x 2.3 cm on the right and 1.9 x 2.2 cm on the left. New 1 cm right subcutaneous nodule in the superficial back soft tissues, concerning for metastatic spread."

He has a nagging cough – seeing radiologist for the lumps/growths this coming Thursday 20th – more than likely will be another session of 10 treatments

He does not want to do anything- just sit watch tv – tell him to do something most likely forgets or does what he wants – since March he has destroyed the Ford truck that used on property to haul scrap metal to the dumpster near road side – in March he slammed into something while trying to get some wood for the night that show/cold spell we had – took him all day to get not even enough to last the night then got it stuck up in front of trailer – ran into at scrape pile and just left it there 🙁 Last was told not to reve it up but did and blew the timing chain I had just spent $80+ on a cylnoid & modular – so we cut bed off mounted it on a small wagon and cut the rest up and its goign in the dumpster

Think his memory is going…. know his common sense is gone – I was out fron cleaning up a pile of old sweepers on to truck before it bit the dust and he walked right past me – knew I was in between him and the truck and started throwing them towards me – one hit me jsut at behind my right ear all i could do was bite my tongue walk off crying to a friend who was cutting steel it hurt worse hat when feel against the dumpster a year ago… about 2 weeks earlier I cut my knew wide open and was applying pressure ot stop the bleeding =he did not see the extent of it or blood but held up one of his fingers and said " you are not the only one bleeding" I saw not blood, not cut/puncture and I blew a cork – walked out of trailer and said I had to go back to work picking up scrape – my knee still bothers me and I can not bend over for every long periods of times but I keep on trucking…

The 64A is sold – I took the bank appraisal was well below the selling price – but after the knee episode and the year of fear of losing every thing, no good sleep etc. The bank loan is paid off and I made the final payment on the house – of course I do not know where i really stand until next April – but at least if i get tired of cleaning up the 5.3a I can walk away and sell it as is – which is better than when started – he could give a dam about anything and has helped very little if any – there has been 12 dumpsters of metal out of here ( roughly 78 ton) and 8 dumpsters of trash – which he helped create over the years – he will not even sweep the floors or keep coffee made. He has this irritating snicker laugh after just about every comment he makes as if everything is funny.

House is done and i am moving boxes in kitchen & laundry appliance bought but no furniture – I am not sure if can afford but I am out of here come mid / late fall of a night and will sleep on floor in sleeping bag….

REPLY
@reibur1951

YERVOY® (ipilimumab) & OPDIVO® (nivolumab) immunology was stopped in March; here are no new clinical studies and he has exhausted all the chemo & immunology drugs used to treat Lung cancer – put him on 60 mg prednisone for cough & what was possible infection shown on the ct scan of March 17, for a month and then graduated him off of it The Ct scan of May 12 Described as ", history of poorly differentiated stage IVb squamous cell carcinoma of the right upper lobe with nodal spread to the left cervical and axillary lymph nodes." and has 3 new – not yet showing above the skin : "Growth of the bilateral axillary centrally-necrotic lymph
nodes measuring 4.0 x 2.3 cm on the right and 1.9 x 2.2 cm on the left. New 1 cm right subcutaneous nodule in the superficial back soft tissues, concerning for metastatic spread."

He has a nagging cough – seeing radiologist for the lumps/growths this coming Thursday 20th – more than likely will be another session of 10 treatments

He does not want to do anything- just sit watch tv – tell him to do something most likely forgets or does what he wants – since March he has destroyed the Ford truck that used on property to haul scrap metal to the dumpster near road side – in March he slammed into something while trying to get some wood for the night that show/cold spell we had – took him all day to get not even enough to last the night then got it stuck up in front of trailer – ran into at scrape pile and just left it there 🙁 Last was told not to reve it up but did and blew the timing chain I had just spent $80+ on a cylnoid & modular – so we cut bed off mounted it on a small wagon and cut the rest up and its goign in the dumpster

Think his memory is going…. know his common sense is gone – I was out fron cleaning up a pile of old sweepers on to truck before it bit the dust and he walked right past me – knew I was in between him and the truck and started throwing them towards me – one hit me jsut at behind my right ear all i could do was bite my tongue walk off crying to a friend who was cutting steel it hurt worse hat when feel against the dumpster a year ago… about 2 weeks earlier I cut my knew wide open and was applying pressure ot stop the bleeding =he did not see the extent of it or blood but held up one of his fingers and said " you are not the only one bleeding" I saw not blood, not cut/puncture and I blew a cork – walked out of trailer and said I had to go back to work picking up scrape – my knee still bothers me and I can not bend over for every long periods of times but I keep on trucking…

The 64A is sold – I took the bank appraisal was well below the selling price – but after the knee episode and the year of fear of losing every thing, no good sleep etc. The bank loan is paid off and I made the final payment on the house – of course I do not know where i really stand until next April – but at least if i get tired of cleaning up the 5.3a I can walk away and sell it as is – which is better than when started – he could give a dam about anything and has helped very little if any – there has been 12 dumpsters of metal out of here ( roughly 78 ton) and 8 dumpsters of trash – which he helped create over the years – he will not even sweep the floors or keep coffee made. He has this irritating snicker laugh after just about every comment he makes as if everything is funny.

House is done and i am moving boxes in kitchen & laundry appliance bought but no furniture – I am not sure if can afford but I am out of here come mid / late fall of a night and will sleep on floor in sleeping bag….

Jump to this post

@reibur1951– Oh, dear you really have your hands filled now. I know that you made a promise to your friend to take care of him. Do you think that it's time for a nursing home or assisted living? Perhaps this is more than you can handle now?

REPLY
@reibur1951

YERVOY® (ipilimumab) & OPDIVO® (nivolumab) immunology was stopped in March; here are no new clinical studies and he has exhausted all the chemo & immunology drugs used to treat Lung cancer – put him on 60 mg prednisone for cough & what was possible infection shown on the ct scan of March 17, for a month and then graduated him off of it The Ct scan of May 12 Described as ", history of poorly differentiated stage IVb squamous cell carcinoma of the right upper lobe with nodal spread to the left cervical and axillary lymph nodes." and has 3 new – not yet showing above the skin : "Growth of the bilateral axillary centrally-necrotic lymph
nodes measuring 4.0 x 2.3 cm on the right and 1.9 x 2.2 cm on the left. New 1 cm right subcutaneous nodule in the superficial back soft tissues, concerning for metastatic spread."

He has a nagging cough – seeing radiologist for the lumps/growths this coming Thursday 20th – more than likely will be another session of 10 treatments

He does not want to do anything- just sit watch tv – tell him to do something most likely forgets or does what he wants – since March he has destroyed the Ford truck that used on property to haul scrap metal to the dumpster near road side – in March he slammed into something while trying to get some wood for the night that show/cold spell we had – took him all day to get not even enough to last the night then got it stuck up in front of trailer – ran into at scrape pile and just left it there 🙁 Last was told not to reve it up but did and blew the timing chain I had just spent $80+ on a cylnoid & modular – so we cut bed off mounted it on a small wagon and cut the rest up and its goign in the dumpster

Think his memory is going…. know his common sense is gone – I was out fron cleaning up a pile of old sweepers on to truck before it bit the dust and he walked right past me – knew I was in between him and the truck and started throwing them towards me – one hit me jsut at behind my right ear all i could do was bite my tongue walk off crying to a friend who was cutting steel it hurt worse hat when feel against the dumpster a year ago… about 2 weeks earlier I cut my knew wide open and was applying pressure ot stop the bleeding =he did not see the extent of it or blood but held up one of his fingers and said " you are not the only one bleeding" I saw not blood, not cut/puncture and I blew a cork – walked out of trailer and said I had to go back to work picking up scrape – my knee still bothers me and I can not bend over for every long periods of times but I keep on trucking…

The 64A is sold – I took the bank appraisal was well below the selling price – but after the knee episode and the year of fear of losing every thing, no good sleep etc. The bank loan is paid off and I made the final payment on the house – of course I do not know where i really stand until next April – but at least if i get tired of cleaning up the 5.3a I can walk away and sell it as is – which is better than when started – he could give a dam about anything and has helped very little if any – there has been 12 dumpsters of metal out of here ( roughly 78 ton) and 8 dumpsters of trash – which he helped create over the years – he will not even sweep the floors or keep coffee made. He has this irritating snicker laugh after just about every comment he makes as if everything is funny.

House is done and i am moving boxes in kitchen & laundry appliance bought but no furniture – I am not sure if can afford but I am out of here come mid / late fall of a night and will sleep on floor in sleeping bag….

Jump to this post

Hello @reibur1951

I think that Merry, @merpreb, is providing some good feedback on the problems you are experiencing right now. You have been a faithful friend to this family for some time now. It does sound as if the time has come for him to be in a care facility. His illness is certainly causing you both problems with safety. It is important for both of you to be safe.

REPLY

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th – goes back tuesday 25th – and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on – he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage – its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through – most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

REPLY
@reibur1951

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th – goes back tuesday 25th – and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on – he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage – its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through – most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

Jump to this post

Good morning- You are correct, what was I thinking? Assisted living wouldn't be the place, although some offer graduated help according to the needs of the patient. Does he want to continue treatments at this time or are they to control pain? I can't beleive the amount of work that you have been doing.

REPLY
@reibur1951

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th – goes back tuesday 25th – and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on – he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage – its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through – most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

Jump to this post

Hello @reibur1951

It sounds like you are doing the best you can under the circumstances. If he still wants to work on cancer treatment then he does need transportation to Indianapolis.

I am glad to hear that you have some help getting the acreage cleared. It is important to take care of yourself when you are caring for someone else.

Do his doctors indicate that there has been any metastasis beyond the lung? Are you familiar with palliative care? It is different than hospice care in that he can still continue with treatment, but the patient has specialized help with some of the side effects of treatment, including pain.

Here is a link to some information about palliative care, https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overviewe,

If you think that this might be something that would be helpful to your friend (and you) and relieve you of some of the burden of caregiving you might talk to his doctor in Indianapolis to see if they can make a referral to Palliative Care.

REPLY
Please sign in or register to post a reply.
  Request Appointment