OT-Update on Freckles

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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Jack Zappa
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Re: OT-Update on Freckles

Post by Jack Zappa » December 26th, 2017, 11:46 am

Bob
Thanks for all you do for this site. While I do not view it often and am a serious offender of "taking" from this site rather than "giving"...I just want to let you know that the information and support provided here is great. Thank you for giving everything you have to everyone here. I wish you peace and comfort as you bravely forge ahead one day at a time. Thank you for being a wonderful example for us all.

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TruckerRon
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Re: OT-Update on Freckles

Post by TruckerRon » December 26th, 2017, 10:58 pm

Bob, is that supplemental oxygen being properly humidified? I'm only using a CPAP, but since I got the heated hose and quit having the humidity not make it to the end of the hose* I've avoided my usual winter colds and bronchitis.

* Because we really lower the temperature at night during the winter my CPAP hose had condensation building up to the point the unheated hose gurgled.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » December 27th, 2017, 10:55 am

TruckerRon wrote:
December 26th, 2017, 10:58 pm
Bob, is that supplemental oxygen being properly humidified?
Yes. I have tried without the water and it was worse. Will talk with the nurse later today.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my eldest daughter.

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Leah
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Re: OT-Update on Freckles

Post by Leah » January 1st, 2018, 4:49 pm

Hi Bob,
Just checking in, Happy New Year! How are you feeling/doing? update please?
Love ya,
Leah

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ROBO Pop
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Re: OT-Update on Freckles

Post by ROBO Pop » January 3rd, 2018, 7:13 pm

Hey Bob, hope you were able to enjoy the holidays and spend quality time with family. How are you doing so far?
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 4th, 2018, 9:57 am

I have to wonder if my strength issues were due to the chemo. I may have had a better quality of life since June if I had not gotten the chemo. As it took my immune system and seemed to destroy it. As I have said before. If you have terminal cancer, with no cure in sight, I would not do the chemo.

Thinking about the “quality of life” issue these last few days I am convinced that I would have been much more active and able to get around without the Chemo. That is my opinion but how I feel today. I sleep in a very comfortable recliner. I get up in the morning, have coffee, get dressed and cleaned up then have breakfast.

I check on the computer for new E-mail and then the ICD site. This is usually less than 15 minutes. I also check my personal financial information several times a week. I take a pain pill for my chest pain and sit in my recliner and watch a few minutes of the news then try to take a nap. I try another cup of coffee around 8:30 or 9:00 if I am awake. During the day I will change chairs several times a day so I don’t get “tired butt” and bed sores and walk around the house some. Don’t forget I have a, oxygen tube running 7 X 24 and it is now at an 8+ level. Then lunch and maybe a little TV and or nap. I get a snack. Then it’s dinner time, then a shower and change into my night clothes. Some more TV then to sleep.

I do get a few visitors but not as many as I am used to.

With the cold weather here and my not feeling real good I did not get out of the house for almost 3 weeks. I have been out a couple of times this last week. I started gaining weight again and hope it reverses again somewhat soon.

I guess I am a little depressed although realistic to know that and the nurses indicate things are progressing (they really don’t give me a lot of information so who really knows) and I do get another evaluation next Monday to verify I still need Hospice care.

So anyway, this is not what I envisioned as quality of life when I started making some of the decisions about my care.

Finally, my grand daughter just went back to college yesterday. She does graduate in April. There is a good chance I will never see her in person again.

Sorry to be in a downer right now but I needed to say it.
wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my eldest daughter.

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Suzanne
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Re: OT-Update on Freckles

Post by Suzanne » January 4th, 2018, 3:32 pm

Hi Bob,

I just want to let you know that you are in my thoughts and prayers, daily.

Thank you for all you do and for sharing your thoughts and experiences with us.

My heart breaks for you, saying goodbye to your granddaughter, knowing you might not see her again. At the same time, it's good you got that chance.

As far as the chemo goes, how were you to know for sure what would be the best for you. I wish you better days ahead.

dancehearts
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

Rough Rider
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Re: OT-Update on Freckles

Post by Rough Rider » January 4th, 2018, 6:10 pm

Some years ago (20?) a friend was diagnosed with basically terminal cancer. I even went with him to his first chemo session. The disease eventually won as it will always. Part of the deal is we don't get to live forever (and really, who would want to).

What I remember though is his daughter commenting to me after he had passed was that given the chance, she would have gladly murdered his oncologist. She never specified nor did I ask, but I always felt she was saying that she was really pissed having her father go through chemo. I have the sense you are saying the same thing for what seems to be the same reasons.

Now I could tell this same story to someone just diagnosed and I suspect it would go in one ear and out the other. But if you tell it as a cancer patient, it just may make a difference in what they decide to do and just how they live out there days. Your postings can and will make a difference. Thank you.

InSync
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Re: OT-Update on Freckles

Post by InSync » January 4th, 2018, 11:26 pm

Thank you for being real, Bob. I appreciate your brave honesty. In considering quality of life, I've always thought that as long as I was able to enjoy time with the people I love, that would be an acceptable quality of life to me. I realize now that I've never really defined what "enjoying time" with them looks like. Your posts have made me much more realistic in what my expectations might be. I'm sure there are many bittersweet moments like you experienced over your granddaughter. You've shown great strength and grace. Please feel free to share your thoughts with us without fear of judgment. We know and understand that life is fragile and the gift of more time comes with an emotional burden.

You are often in my thoughts.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

mykidsmom
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Re: OT-Update on Freckles

Post by mykidsmom » January 5th, 2018, 8:05 am

frecks you are handling your situation with dignity and bravery and i think this giving yourself targets is absolutely the best idea..my crazy friend who on receiving her 2nd heart years ago also discovered she had a fast growing cancer...her attitude was..feck this ive come thro numerous heart issues, two transplants..so cancer can just feck off....im going no where till i see my last daughter married and make her dress..and she did..her next target was a grandchilds communion....and so on and so on...12 years later!!!!

good luck freckles..your the best.
I think.....Therefore I am.!!!!!

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TruckerRon
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Re: OT-Update on Freckles

Post by TruckerRon » January 5th, 2018, 11:39 am

Bob, I'm also impressed with how you're handling your situation. It's perfectly normal to have depression during a terminal disease and it's also perfectly normal to have "up" days. I pray you may have more of the good ones.

As for cancer necessarily being fatal, that's changing. A young boy in my church developed leukemia about 6 years ago at the age of 5. It was fought with the best treatments available, but it kept coming back (4 times). Last night his mother announced that after the recent CAR T-Cell therapy he received during the fall the doctors cannot find any cancer or indicators of cancer! They are cautiously calling him cured!

https://www.explorecarttherapy.com/about-CAR-T-therapy

I remember all too well the death of a pastor's son in about 1967, also from leukemia. It was the first time I lost a friend to death.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 9th, 2018, 2:25 pm

TruckerRon wrote:
January 5th, 2018, 11:39 am

As for cancer necessarily being fatal, that's changing. A young boy in my church developed leukemia about 6 years ago at the age of 5. It was fought with the best treatments available, but it kept coming back (4 times). Last night his mother announced that after the recent CAR T-Cell therapy he received during the fall the doctors cannot find any cancer or indicators of cancer! They are cautiously calling him cured!

I remember all too well the death of a pastor's son in about 1967, also from leukemia. It was the first time I lost a friend to death.
They did check me for certain check marks and I had none. To their knowledge there is nothing even close to help the stage 4 non-small cell cancer., But thanks.

Short Update;
Saturday; Still pain on the left side of the chest. Took pain pill. Later ended up with acid reflex with a pain of about an 8 within just a few minutes.
Sunday was really bad. Whole left side of chest, acid reflex that was hard to get rid of and then lower abdominal pain. Spent the whole day in pain. So I had to start the pain pills.

Monday the head nurse ended up changing my meds around so I am take pain pills several times a day, plus an acid reflex pill daily (I don’t usually get acid reflex). Pills to help with anxiety issues plus a corticosteroid. So I need to add these to my normal listing. Pain was still there all over but did get less by evening.

Tuesday, with all the pain meds stuff and other pills I feel a little like a zombie. Also many of you know what side effect the pain meds have with normal body functions. I hope to get back to a better normal movement later today, or some more heavy something will be needed soon.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my eldest daughter.

garya
Posts: 524
Joined: September 10th, 2010, 9:04 pm

Re: OT-Update on Freckles

Post by garya » January 10th, 2018, 2:47 am

I'm sorry to hear about your pain and discomfort, but much appreciate knowing the reality. Would marijuana help? What of morphine or similar or is that stuff already in your pills? My limited concept is intravenous pain medication can be stronger and more immediate. Is the pain a natural progression/consequence of the disease or is there still some association with the chemo you received? You have my thoughts and prayers.

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Ozchrissy
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Re: OT-Update on Freckles

Post by Ozchrissy » January 10th, 2018, 7:42 am

My beautiful man, I feel for you as you endure this pain and body deterioration. (As for pain meds and movements, it is the pits, I hope they can sort you out soon)

I have already decided that if my problems with my digestive stuff is Cancer again, then I am not having chemo or surgery, except to relieve pain or open my oesophagus. I see the surgeon on the 23rd so other than an endoscopy that is it for me.

Do you intend to stay at home until that final day, or will you be taken to hospital? If the pain progresses where you need more than the oral pain relief, can that be done at home, or will you have to be admitted?

It would have been a very sad moment when you saw your granddaughter off to college. I am sure though that she knows you love her and that you will always be in her heart also.

I am sure you are surrounded by love and you also have the love and thoughts and prayers of those on here. Thank you for sharing this time with us so honestly, you are an amazing man and have taught us all so much about life.

My love and prayers are with you.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 10th, 2018, 9:35 am

Ozchrissy wrote:
January 10th, 2018, 7:42 am
Do you intend to stay at home until that final day, or will you be taken to hospital? If the pain progresses where you need more than the oral pain relief, can that be done at home, or will you have to be admitted?

It would have been a very sad moment when you saw your granddaughter off to college. I am sure though that she knows you love her and that you will always be in her heart also.

I am sure you are surrounded by love and you also have the love and thoughts and prayers of those on here. Thank you for sharing this time with us so honestly, you are an amazing man and have taught us all so much about life.

My love and prayers are with you.
Thanks Chrissy, I do not intend to go to a facility. They feel I have everything I need here to complete the tasks. Yes, as noted below there is more powerful drugs for the next steps. I already get into a "fog" at times and don't really want to be a vegetable so I will see what is next.

I do talk with my Grand daughters (and my sister) regularly and really don't them to see as things get worse. My daughters also see me a couple of times a week.

garya wrote:
January 10th, 2018, 2:47 am
I'm sorry to hear about your pain and discomfort, but much appreciate knowing the reality. Would marijuana help? What of morphine or similar or is that stuff already in your pills? My limited concept is intravenous pain medication can be stronger and more immediate. Is the pain a natural progression/consequence of the disease or is there still some association with the chemo you received? You have my thoughts and prayers.
Thanks Gary. marijuana is not an option I want to try. I do have what they call a morphine drips. You put it under your tongue. I cannot explain how BAD it tastes and it is for a cough not pain. Even the nurses agree that it's really a bad taste. So we are trying just some low power pain pills (6 a day). They have agreed to do a pill form of morphine if I need it. One major issue I have is what is the cause of the pain. The chemo wiped out my immune system, 4 of my heart valves are leaking and of course the cancer. One problem is they don't want me to know a "drop dead" estimated date. BP now in the low 90's so less coreg now.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my eldest daughter.

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