About ready to scream, been bad month

Posted by reibur1951 @reibur1951, Jul 5, 2019

P let the lavender piton Siamese out on the 2nd we both walked the yard i did till could do no more Monday1st i woke up with shoulder hurting and it got where could barely move it event o get dress was a chore – any way to hunt the kitten he decided tiller had to be started in the tall gras wrapped the tines up good with the grass and the cable from the satellite dish to bedroom tv argued with direct-tv about what was wrong they would not accept that i knew a well bent if not broken cable repairman came out on Thursday 3rd and decided to screw it to the side of the mobile home – and right through the electrical wiring for the offset had to call P’s brother-in-law in for re-enforcement as I wanted it repaired properly right – as we had to be in Indy on the 5th I was going to cancel if not repaired right do not need an electrical fire and lose what little i got and my genealogy records trailer would be no loss really its a piece of s–t 1978 falling apart would be faster excuse to get out of here to better accommodations but not way to do it …. supervised he fixed it properly… hauled a load of scrap off and found someone to help cut up heavier stuff so better $$ out of it – got one hugh homemade fork lift gone that has sit out in front yard since 2016…. Friday 28th was bad i sat in hare and semi cried all day think the whole year month hit been a year since RUss died (June 28th)… Sat 29th went to town and the van/car vibrate more than usual and very different so called P’s brother-in-law to test drive he did not have to – – passer side tires had flat spots – – drivers side major problem the wire cord was showing out of tire and it had busted through on the inside
could only see by taking pic with camera it was frayed splintered and looked like a “bad hair day” cancelled his ct’s scans out for Monday made them on the 3rd and then went back today – good news/bad news by ct’s the right Supraclavicular lymph node(s) are slowly shrinking don’t go back to radiologist tll 17th dec – left axillary lymph node in armpit has started to swell & their is one or two around the esophagus that is enlarged – he had he labs/dr/ infusion today he still wants to keep him on the Prembo KEYTRUDA® (pembrolizumab) | Anti–PD-1 Immunotherapy as everything else is looking good and main tumor too – ct’s in 6 to 9 weeks to see what is goign on not suree what plans is if still growing 🙁 The survey done – the variance passed and the appraisals done – just waiting to get into lawyer to deed off the 5a to the sister to see if there is a nice attitude and more help but i doubt both work – and she wanted the full 69a…. been a wet farm season a lot of ground not planted – the 69 is the 40 thats on sale hold did not get planted but its cash rent when get the 5a deed off I will know what i got left have been scouting out new/used newer model trucks too and start on my house in culver its 114+ i think its beeter try to make a part of it livable rather than buy more property but cross that bridge when get there or find place to rent but will have to where we can take the doxie and cat…. P’s birthday Sunday will be 58… Sep/Oct will be 3 years when it all started with him seems like yeasterday… I am hanging in maybe just by a thread buy i am hanging on tight I know God will provide

@reibur1951 So sorry to hear all of that together- not exactly a hot dogs & lemonade month! Sending a hug & a prayer from here.

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Thanks life is a bowl of cherries…. f you do not buckle under you do survive it could be worse Alive and still kicking 🙂

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Sending good thoughts and prayers your way. At least you are doing what you can. God bless you.

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I think everyone here can relate to needing to vent. Being the caregiver is hard!! When you are responsible to keep the life raft afloat, and things start to run amok it can be overwhelming. I know you said you are hanging by a thread, but tie knot in that thread and hang on. I know it seems trite, but it is heartfelt to say, when you look back, you will be glad you did. Thinking of you.

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@reibur1951

Thanks life is a bowl of cherries…. f you do not buckle under you do survive it could be worse Alive and still kicking 🙂

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Hello @reibur1951

As it has been about a month since you last posted, I was thinking about you and wondering how you are doing. How are the property and vehicle matters coming along? I hope that you made it through the anniversary of Russ' death OK, anniversary's like that can be difficult.

I was glad to hear that your son's friend had some good news but sorry to hear of some of the lymph node enlargement. How is he doing now?

I'm looking forward to hearing from you again.

Liked by bluelagoon

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Update Synopsis as Not sure what posted this summer… friends neck lymph node started growing in Jan. by March really bothering him tried a clinical study of chemo for a few weeks but was still growing by late April when decided to do radiation & genomic testing 10 radiation treatments in May and nothing came of the genomic testing for markers what ever was off the Keytruda during radiation and then went back on it Oct 2nd CT scans brought bad news on the 7th that the lymph node in armpit started growing and one in the chest area these were original old ones – the neck lymph node remained same as the July Ct scans and under control the main tumor has not changed thus far since the end of the 1st clinical study in April 2018 when he began the Keytruda only all other lymph nodes remain stable and unchanged… on the 7th the Keytruda could not be given because of the CT results was told a harsh treatment & possibly keytruda too or that a clinical study was available ( Ant-IDO-1 Agent maybe combined with Anti-PDL-1) it’s a Pahse 1a/1b and last resort would be radiation… Chose the clinical study Eli Lilly it is 10 weeks with on Thursdays and then there are 3 times we have to go back on Friday for blood testing ekg and the 3rd Friday a biopsy… signed papers on the 7th today (18th) we went back for the labs tests, biopsy and ct scan of the abdomen and pelvis … .

Thursday 24th we start in oral dosing with infusion, 8 hour post blood draw and go back of Friday 25th for blood draw oral dosing and ekg then next to weeks only the labs and oral …..

Been while since posted… summer went way to fast… been cleaning up 5.3 acres a long .ways to go… things finally settled the daughter & husband got her 5A but had to get a variance so could keep farm land frontage nothing ever has been simple bu t went through without question… sale of 40A cent through on Sep 11 and went got new vehicle 2019 GMC Sierra 1500 Elevation series a 4by4 did not have it but 4 days someone keyed/scratched the drivers side from drivers door to taillight .had to totally repaint that side… thus can not be Ziebarted till late December. its paid for in full going to stick it out here another winter if can and put money into restoring my house… me i am hanging in sometimes by a thread i think turned another year older on Sunday trucker friend came in helped us get dyer out of garage/barn not attached to trailer into laundry/furnace room so will provide extra heat when ran and another problem solved that's been on going for 3 years but his family would not help solve… God will provide and guide

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@reibur1951

Update Synopsis as Not sure what posted this summer… friends neck lymph node started growing in Jan. by March really bothering him tried a clinical study of chemo for a few weeks but was still growing by late April when decided to do radiation & genomic testing 10 radiation treatments in May and nothing came of the genomic testing for markers what ever was off the Keytruda during radiation and then went back on it Oct 2nd CT scans brought bad news on the 7th that the lymph node in armpit started growing and one in the chest area these were original old ones – the neck lymph node remained same as the July Ct scans and under control the main tumor has not changed thus far since the end of the 1st clinical study in April 2018 when he began the Keytruda only all other lymph nodes remain stable and unchanged… on the 7th the Keytruda could not be given because of the CT results was told a harsh treatment & possibly keytruda too or that a clinical study was available ( Ant-IDO-1 Agent maybe combined with Anti-PDL-1) it’s a Pahse 1a/1b and last resort would be radiation… Chose the clinical study Eli Lilly it is 10 weeks with on Thursdays and then there are 3 times we have to go back on Friday for blood testing ekg and the 3rd Friday a biopsy… signed papers on the 7th today (18th) we went back for the labs tests, biopsy and ct scan of the abdomen and pelvis … .

Thursday 24th we start in oral dosing with infusion, 8 hour post blood draw and go back of Friday 25th for blood draw oral dosing and ekg then next to weeks only the labs and oral …..

Been while since posted… summer went way to fast… been cleaning up 5.3 acres a long .ways to go… things finally settled the daughter & husband got her 5A but had to get a variance so could keep farm land frontage nothing ever has been simple bu t went through without question… sale of 40A cent through on Sep 11 and went got new vehicle 2019 GMC Sierra 1500 Elevation series a 4by4 did not have it but 4 days someone keyed/scratched the drivers side from drivers door to taillight .had to totally repaint that side… thus can not be Ziebarted till late December. its paid for in full going to stick it out here another winter if can and put money into restoring my house… me i am hanging in sometimes by a thread i think turned another year older on Sunday trucker friend came in helped us get dyer out of garage/barn not attached to trailer into laundry/furnace room so will provide extra heat when ran and another problem solved that's been on going for 3 years but his family would not help solve… God will provide and guide

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UPDATE into and ending 2nd month of the clinical study – seems to have of side effects – yesterday was our last "long day" they were the Oct 24th, Nov 7th, & Nov 21st Labs/ekg upon arrival, 2 hr, 4 hr and 8 hr, after Infusion/Oral dosing. The Fridays 24, 8, & 22 were labs/Ekg/vitals with labs/vitals only –

The Fridays were basically walk-in and walk-out not even a half hour – more time on the road…

There is 5 trips in dec – 3 of the oral dosing & infusion; one trip for labs only & other will be for CT Scan which she messed with the radiation follow-up appointment from the May radiation treatment with christmas week off then in January will be down to every 2 weeks –

This is the Clinical study: https://clinicaltrials.gov/ct2/show/record/NCT03343613

Participants must not have previously received an indoleamine- 2,3-dioxygenase (IDO) inhibitor

STUDY PURPOSE: The purpose of this study is to evaluate the safety of the study drug LY3381916 administered alone or in combination with anti-programmed cell death ligand 1 (PD-L1) checkpoint antibody (LY3300054).

TIME COMMITMENT: Your participation in this trial could last up to 24 months, depending on your cancer type and how you and your tumor respond.

Hopefully this will help – guess the CT on Dec 18th will tell.

Weather has co-operated – no snow on the days we have gone down – misted rain last night when we came home – got out at 8 p.m. and got home after 10 and turned around and went back at 7 a.m. this morning – we could of had hotel but with wood stove only heat and the animals its not been bad.

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Well the 3rd clinical study down the drain… The lymph node in the left armpit is continuing to grow went Tuesday for radiation evaluation – 1st time in seen it up close it s beet red, yellowish gray with crust – he has been itching, rubbing it since just after the 3rd week of December –

Go for the simulation planning on Wednesday the 22nd. will be like for the neck lymph node in May 10 treatments 5 days off the weekends. plans are to go back on the Keytruda on Feb 14th since it has helped to keep the main tumor and other lymph nodes in Chest from growing.

The neck tumor alas went down and is stabilized for now last CT scan sets were Dec. 18th – not sure when next will be was to be in February – had christmas week off – the last Clinical infusion was on the 3rd and the capsules last night…. W

ill see if radiation helps this time around. He had official started his 3rd year as of Oct 25, 2019 seems like eons ago with all that has went down since the diagnosis.

Still toughing it our here been fighting for firewood loads since wood heat is all we got ran out this morning before we left been arguing for this load for a week I bite my tongue I got two who were to help me stock up but have not I have had to go to local grocery or lowes on way home and buy the bundle packs to survive till the loads arrive.. st times i want to scream and give up but i know i can't.

Was being cautious as rent for month was $1000=2000 and could not take the animals (dog a soon to be 10 year old dachshund that stayed by his fathers side the 2 1/2 years he was sick & now two inside cats lavender seal point Siamese & he found one in ditch around Oct 13th its a male and from what I can learn is a "Snowshoe" https://cattime.com/cat-breeds/snowshoe-cats#/slide/1 he is dutiful and ornery Not in mood to give them up – thought of buying a house but they run $125,000 (for a fix-upper) to well over $250,000 – my house needs a lot of TLC been in my deceased husbands family since 1940-1944 well over 114 years old and was in the process of starting he restore then all hell broke loose with his dad first cataract surgery followed by the not making red blood cells and the the sons diagnoses on Oct 25, 2017 He today had regular blood test, dr. and no infusion since kicked out of the clinical since accepted for radiation treatment.

Getting the new dependable vehicle was more important – have made over 20 trips to Indy since got it it had a little over 2,000 miles on it and now will turn over 7,500 on Wednesday.

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@reibur1951

Well the 3rd clinical study down the drain… The lymph node in the left armpit is continuing to grow went Tuesday for radiation evaluation – 1st time in seen it up close it s beet red, yellowish gray with crust – he has been itching, rubbing it since just after the 3rd week of December –

Go for the simulation planning on Wednesday the 22nd. will be like for the neck lymph node in May 10 treatments 5 days off the weekends. plans are to go back on the Keytruda on Feb 14th since it has helped to keep the main tumor and other lymph nodes in Chest from growing.

The neck tumor alas went down and is stabilized for now last CT scan sets were Dec. 18th – not sure when next will be was to be in February – had christmas week off – the last Clinical infusion was on the 3rd and the capsules last night…. W

ill see if radiation helps this time around. He had official started his 3rd year as of Oct 25, 2019 seems like eons ago with all that has went down since the diagnosis.

Still toughing it our here been fighting for firewood loads since wood heat is all we got ran out this morning before we left been arguing for this load for a week I bite my tongue I got two who were to help me stock up but have not I have had to go to local grocery or lowes on way home and buy the bundle packs to survive till the loads arrive.. st times i want to scream and give up but i know i can't.

Was being cautious as rent for month was $1000=2000 and could not take the animals (dog a soon to be 10 year old dachshund that stayed by his fathers side the 2 1/2 years he was sick & now two inside cats lavender seal point Siamese & he found one in ditch around Oct 13th its a male and from what I can learn is a "Snowshoe" https://cattime.com/cat-breeds/snowshoe-cats#/slide/1 he is dutiful and ornery Not in mood to give them up – thought of buying a house but they run $125,000 (for a fix-upper) to well over $250,000 – my house needs a lot of TLC been in my deceased husbands family since 1940-1944 well over 114 years old and was in the process of starting he restore then all hell broke loose with his dad first cataract surgery followed by the not making red blood cells and the the sons diagnoses on Oct 25, 2017 He today had regular blood test, dr. and no infusion since kicked out of the clinical since accepted for radiation treatment.

Getting the new dependable vehicle was more important – have made over 20 trips to Indy since got it it had a little over 2,000 miles on it and now will turn over 7,500 on Wednesday.

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he is back in radiation day 3 yesterday he had to have new scans and be re-assessed on radiation dosage it had tripled in size besides fully being open… was 2nd time I have seen it directly and fully… it looks as big as a soft ball resembles an erupted volcano and has 2-3 round pencil sized deep holes where it is seeping/draining… today the gave us A supply of non stick gauze pads syringes of saline solution to wash it down, and a stretch tube of gauze to keep it covered to keep shirt from irritating it and draining all over but its not working the tube remains but the gauze pads drop so tomorrow they are going to have to come up with another ,method. While re-bandaging tonight I found a dime size beet red lump on the lower left shoulder blade he passed it off as falling on the ice the other day there is no bruising etc. told him he is to tell them of its presences not sure it its another lymph node swelling or not nut does not have to be ignored and let go…. got 7 more treatments unless they increased them but not said as yet Hoping i am just paranoid and its nothing.

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@reibur1951

he is back in radiation day 3 yesterday he had to have new scans and be re-assessed on radiation dosage it had tripled in size besides fully being open… was 2nd time I have seen it directly and fully… it looks as big as a soft ball resembles an erupted volcano and has 2-3 round pencil sized deep holes where it is seeping/draining… today the gave us A supply of non stick gauze pads syringes of saline solution to wash it down, and a stretch tube of gauze to keep it covered to keep shirt from irritating it and draining all over but its not working the tube remains but the gauze pads drop so tomorrow they are going to have to come up with another ,method. While re-bandaging tonight I found a dime size beet red lump on the lower left shoulder blade he passed it off as falling on the ice the other day there is no bruising etc. told him he is to tell them of its presences not sure it its another lymph node swelling or not nut does not have to be ignored and let go…. got 7 more treatments unless they increased them but not said as yet Hoping i am just paranoid and its nothing.

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Looks like its is shrinking but it still looks "ugly" and still has a sinking volcano crater look. They are goign to keep any eye on the shoulder bump and it is assumed it is cancerous as of now since it is within the area and a result of the original lymph node of (Oct 2017) under the left armpit. It is just outside of the area being radiated so if it grows or they decide it should be radiated means a reassessment on Tuesday/Wednesday and extended radiation now or later another series of radiation treatments in store one can only second guess – He was not happy I turned it it in but I would rather be safe than sorry since he does not complain til its to late or it causes to much pain but he can not see it himself unless maybe he looks in a mirror and I doubt that – I am also keeping eye on it as i wash out the "volcano" with saline solution and putting the non-stick gauze on it and wrapping it – I got Koban yesterday afternoon when got home and made a sling around it (over the the round stretch wrap in order to keep the pads in the stretch wrap and on it – again becasue he will not tell when the pads drop out – and thus back to square one with irritation of clothing

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A great wrap to put around gauge or any pads is Vetrap (bandaging tape, which is used on horses ankles. Works better than any tape and does not tear skin or break it down.

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@reibur1951

Looks like its is shrinking but it still looks "ugly" and still has a sinking volcano crater look. They are goign to keep any eye on the shoulder bump and it is assumed it is cancerous as of now since it is within the area and a result of the original lymph node of (Oct 2017) under the left armpit. It is just outside of the area being radiated so if it grows or they decide it should be radiated means a reassessment on Tuesday/Wednesday and extended radiation now or later another series of radiation treatments in store one can only second guess – He was not happy I turned it it in but I would rather be safe than sorry since he does not complain til its to late or it causes to much pain but he can not see it himself unless maybe he looks in a mirror and I doubt that – I am also keeping eye on it as i wash out the "volcano" with saline solution and putting the non-stick gauze on it and wrapping it – I got Koban yesterday afternoon when got home and made a sling around it (over the the round stretch wrap in order to keep the pads in the stretch wrap and on it – again becasue he will not tell when the pads drop out – and thus back to square one with irritation of clothing

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Also vet wrap which is kind of like Koban, comes in wide or narrow and is less expensive. Here’s a hint. You don’t have to stretch it much, it really just sticks to itself. Some brands are a rougher texture than others and more irritating to that area. After you wrap it it, can he tolerate a tank top over the bandages?

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No problem. Used it on husband who became a quadriplegic and his skin was very sensitive. Bought it at mills fleet for $1.74. Walmart has it also but 3.99.

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@reibur1951

Looks like its is shrinking but it still looks "ugly" and still has a sinking volcano crater look. They are goign to keep any eye on the shoulder bump and it is assumed it is cancerous as of now since it is within the area and a result of the original lymph node of (Oct 2017) under the left armpit. It is just outside of the area being radiated so if it grows or they decide it should be radiated means a reassessment on Tuesday/Wednesday and extended radiation now or later another series of radiation treatments in store one can only second guess – He was not happy I turned it it in but I would rather be safe than sorry since he does not complain til its to late or it causes to much pain but he can not see it himself unless maybe he looks in a mirror and I doubt that – I am also keeping eye on it as i wash out the "volcano" with saline solution and putting the non-stick gauze on it and wrapping it – I got Koban yesterday afternoon when got home and made a sling around it (over the the round stretch wrap in order to keep the pads in the stretch wrap and on it – again becasue he will not tell when the pads drop out – and thus back to square one with irritation of clothing

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Hello @reibur1951, thank you for checking in with an update. I'm sorry to hear about the new cancer site, but I admire the work you are doing to keep it clean and covered. You are a real hero to your friend. Does he live far from you?

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@hopeful33250

Hello @reibur1951, thank you for checking in with an update. I'm sorry to hear about the new cancer site, but I admire the work you are doing to keep it clean and covered. You are a real hero to your friend. Does he live far from you?

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I am not sure I am a hero – just trying to do right by him where his 3 sisters (1 half) and 2 brother-in-laws (1 half) have lacked the last three years – they have not made effort to help take him io I U Medical / SImon Cancer Center – I promised his dad and his mother if she understood anything that was going on with I would stick by him to the end it will be 3 years come Oct 25th it been a long road…

Have him here with me I don't think could handle it otherwise… hopefully can be out of this antiquated dilapidated 1975 motile home was just trying to be cautious main thing was to get better vehicle – which proved correct thing to do been 20 plus trips fro the third clinical and will be 12-13 in total for the radiation since I got it its turned over 9000+ and it was around 2000+ as it was used bb one of the employees and a demo – by time radiation is done it will be 12,000 miles on it I love it –

Thanks @auntieoakley, the Koban even did not help I wrapped it around it near bottom to catch the bottom edge of the pads , then done the X-crossing across the the pads and then wrapped middle ways, the gauze stretch band they provides was under neath the koban – and crossed it over his left shoulder – the pads still worked out of it – at last they are providing the syringes of saline, gauze pads and stretch bands – the koban was my ideas guess its the arm movement lifting up down etc causing hte problem – They will have to come up with some more saline solution and gauze pads on Monday.

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