Living with inoperable pancreatic cancer

Posted by ajh5285 @ajh5285, Aug 26, 2023

Emphasis on living

How are you doing it? In other words, what factors do you identify as most important to staying alive? and how long have you been doing it?
I have little-no control over my current living circumstances, and know that stress probably contributes to my current malaise. I’m hoping to be able to hang on until the date of a planned move to what looks to be more congenial circumstances in another 2 weeks.

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@sprinter345

Where are you being treated Barbara? Your situation provides a lot of hope.

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I initially went to MD Anderson for the work up of my disease when the tumor was found on CT scan. I have my treatments in Jackson, Mississippi. I am called an exceptional responder at MD Anderson. I will go back there again if the cancer returns

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@barbara333

I was initially diagnosed September 2021 and began chemo in November 2021. In October 2022 my PET showed no active cancer. My Ca19-9 had continued to drop throughout treatment. Until January 2023 my treatments were every 2 weeks, then to 3 weeks. Last month they stretched to every 4 weeks. PET scans have continued to show no activity snd Ca19-9 is 14. The lesions that were on my liver are gone and my lungs do not have any pinpoint activity. I still have neuropathy from the 10 rounds of oxaliplatin. I continue on leucovorin, campostar, and 5 fu. I feel well, I stopped dwelling on the fact that I was devastated by a cancer diagnosis after about 10 weeks and now it is a fact just like asthma and diabetes. I pray for those that provide me care and have so many that have prayed for my and the success of my treatment. The prayers have given me strength to continue the treatment, removed stress and worry, given me a peace, and enhanced the success of my medical treatment. While many do not believe in the power of God, I do. I have had those of different faiths and religions pray for me and I have learned to pray for others. I believe that healing our spirit is a big part of being able to live with cancer.

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It's good to hear your treatments are working for you. It's nice to have something positive for a change. In Oct. 2022, I was told I had pan cancer and it was like "Oh no!", but deceided I needed to deal with it and keep going. I think it's wonderful you are praying for your caregivers. I forget to do that, especially with what they deal with everyday must take a toll on them too. I also have had many people praying for healing and it humbles me and at times overwhelms me. I want to make sure I'm worthy of these prayers. I also believe in the power of God, because I have had several things happen to me that at the time didn't seem like a big deal. Now when I look back I go "wow", how this all worked for my benefit! I do agree that the power of prayer, healing our spirit & trying to stay positive all help in being able to live with cancer. Prayers for your continued healing. Take care.

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I pray that you will find healing, comfort, and peace.

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@gamaryanne

@ajh5285
On my post chemo days, when I am the lowest, the thoughts enter my mind that I am no longer good for much. I don’t feel well enough to listen to a friend’s troubles, I can barely write notes of encouragement, cooking is out of the question(!) and watching TV makes me feel like a slug! But I remind myself that this too shall pass, and it does. We are not contagious; join a group, do easy volunteer activities, etc. you are valuable!!

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I guess that I am lucky in that I enjoy watching TV and loving on my dogs. On those low days, I enjoy a day of rest and relaxation. I have learned to not look at life by what I do not feel like doing but to try to make the most of what I can. I know that I have to limit activities when I have the pump on or I have to limit activities when I get it off. Learn to enjoy your time when you do not feel like caring for others and just take care of yourself. You are of value as a person even when you cannot care for others.

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How have you been doing the past days? I enjoyed our discussions and it does help remove some of the feeling & things I keep tucked inside. The last few days I have felt so tired & cranky after chemo. I don't want to always lash out at my husband if he's getting on my nerves because he does help me a lot! I want you to know I'm thinking of you and you are in my prayers. Take care.

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I'm not sure it it's okay to chime in here, but I understand what you're saying. I'm trying to be patient with all the very practical requests my husband is making of me so that things are easier for him once I'm gone, whether it's a positive change resulting from my planned move to a nearby state to be close to family and be in a facility that looks as if it should be more supportive than our current very isolated living situation. Or whether I'm carried off suddenly, as my oncologist informed as part of his "due diligence," some time soon.
I'm also trying to take it easy physically since each visit out for some medical appointment, and associated car ride takes it out of me.
And I'm plagued with various dietary cravings that create complications when I have a rummage in the cupboards and find food that I know isn't good for me but that I find irresistible (tonight it was two Christmas Lindt milk chocolate balls that were left from before I retired maybe a decade ago). Earlier it was salt.
Honestly, this is all so hard for me and those around me.
So know that I'll keep you in my thoughts and what pass for prayers.

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Forgot to add that I'm also trying to reduce stress by listening to soothing music. At night it's usually something on YouTube with waves and/or the healing solfeggio frequency (528 Hz). When I'm awake it tends to be music composed by the irrepressible Mr Handel (George Frederick). There's something that I find so satisfying about his tunes; he's also reputed to be one of the best composers at setting words to music - quite an accomplishment for a native German speaker, who in his career wrote music to accompany words in his native tongue, as well as Latin, Italian, French, and English, which he is supposed to have spoken with a heavy accent leading to the theory that some of the strange emphases in some words in Messiah result from the way he spoke it himself.
Just a suggestion, even if it comes across as a bit of an advertisement....

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@ajh5285

I'm not sure it it's okay to chime in here, but I understand what you're saying. I'm trying to be patient with all the very practical requests my husband is making of me so that things are easier for him once I'm gone, whether it's a positive change resulting from my planned move to a nearby state to be close to family and be in a facility that looks as if it should be more supportive than our current very isolated living situation. Or whether I'm carried off suddenly, as my oncologist informed as part of his "due diligence," some time soon.
I'm also trying to take it easy physically since each visit out for some medical appointment, and associated car ride takes it out of me.
And I'm plagued with various dietary cravings that create complications when I have a rummage in the cupboards and find food that I know isn't good for me but that I find irresistible (tonight it was two Christmas Lindt milk chocolate balls that were left from before I retired maybe a decade ago). Earlier it was salt.
Honestly, this is all so hard for me and those around me.
So know that I'll keep you in my thoughts and what pass for prayers.

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I'm glad you responded and let some of your frustrations out. I feel for you having to think of a move and also talking with your husband about serious things. It is good that you and your husband are talking about things because it may help him in the future & also give him more memories of you. I hope you find a facility that will have your best interest at heart. I do understand living isolated. I live in the country, rural area with farms and some houses around, not saying this is your situation. That's kinda scary thinking your oncologist could have you "whisked away". I hope that doesn't happen, this should be your choices & decisions, even if your oncologist means well. Being close to family is a good thing too. I can appreciate how going anywhere can take it out of you. That's smart to take it easy on your self. I thought I was the only one rifling through cabinets looking for chocolate or whatever! It's strange, one week I want sweets, the next week it's chips, this week I couldn't get enough of tomatoes, weird! I can't imagine how hard this is for you and I would never say I know how you feel because I don't. My tumor in the tail is about 3.5 centimeters & the 2 lesions on my liver aren't that large, so at this time I'm stable, but who knows what the future holds. I hope you don't have a lot of pain because that's what I saw with my mom & her gallbladder cancer. I saw your other message. That's wonderful to have soothing music to help reduce stress! I have always liked Handel's Water Music and of course, The Messiah. One of my favorite experiences was going to a Messiah Sing A Long with part of the Milwaukee Symphony & soloists. This was at the Milwaukee PAC & altos, sopranos, tenors & bass sat in assigned areas of the auditorium. It gave me goose bumps because those of us in the auditorium sang the choir parts with the Symphony accompanying us & the soloists. It sounded so amazing and my voice was gone the next day! I have also found Vivaldi very good also but you need to like violins. I'm glad you have been able to find some things to keep your mind at peace or at least take your mind off of your situation. Thank you also for you good thoughts & prayers. Wishing you well and thinking of you. Take care.

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@margefromwi

I'm glad you responded and let some of your frustrations out. I feel for you having to think of a move and also talking with your husband about serious things. It is good that you and your husband are talking about things because it may help him in the future & also give him more memories of you. I hope you find a facility that will have your best interest at heart. I do understand living isolated. I live in the country, rural area with farms and some houses around, not saying this is your situation. That's kinda scary thinking your oncologist could have you "whisked away". I hope that doesn't happen, this should be your choices & decisions, even if your oncologist means well. Being close to family is a good thing too. I can appreciate how going anywhere can take it out of you. That's smart to take it easy on your self. I thought I was the only one rifling through cabinets looking for chocolate or whatever! It's strange, one week I want sweets, the next week it's chips, this week I couldn't get enough of tomatoes, weird! I can't imagine how hard this is for you and I would never say I know how you feel because I don't. My tumor in the tail is about 3.5 centimeters & the 2 lesions on my liver aren't that large, so at this time I'm stable, but who knows what the future holds. I hope you don't have a lot of pain because that's what I saw with my mom & her gallbladder cancer. I saw your other message. That's wonderful to have soothing music to help reduce stress! I have always liked Handel's Water Music and of course, The Messiah. One of my favorite experiences was going to a Messiah Sing A Long with part of the Milwaukee Symphony & soloists. This was at the Milwaukee PAC & altos, sopranos, tenors & bass sat in assigned areas of the auditorium. It gave me goose bumps because those of us in the auditorium sang the choir parts with the Symphony accompanying us & the soloists. It sounded so amazing and my voice was gone the next day! I have also found Vivaldi very good also but you need to like violins. I'm glad you have been able to find some things to keep your mind at peace or at least take your mind off of your situation. Thank you also for you good thoughts & prayers. Wishing you well and thinking of you. Take care.

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Your living situation sounds very much like mine (close to Madison but still managing to be in "farm" country).
Cravings -- opinions seem to be divided as to whether they are "telling" us anything useful, although I could swear that plain old iodized Morton's salt does seem to have satisfied the salt craving even better than the LiteSalt my oncologist wanted me to use for my "Chemo Feet / Venous Insufficiency" post Chemo complication or the Himalayan pink salt I really like.
Pain -- again sounds as if we have more similarities. I do have an incidental gall stone found on my last scan, which in the setting of pancreatic cancer is advised to be watched & ultrasound ablated if, I guess, it becomes unbearable. Either way I'm glad to have a plausible explanation for the occasional stabbing pains under my rib cage on the right side.
And yes, I've done a sing-along Messiah a couple of times, once in the tiny local church in the Chicago suburb where I grew up (my mother was still alive) and again at a Midnight Mass in Madison. Very satisfying. Wish I could still carry a tune!

I like Vivaldi, but find that with so many works of Handel's to explore (he is reputed to have composed more music than the 3 B's combined!) I don't seem to get around to other composers, except when YouTube ponies them up for me!

I've cleared the Social Work hurdle and so am, I think, "good to go" regarding the planned move.

Take care, and best wishes.

Below, I've pasted a photo that represents Joy to me. It's my late still sorely missed "York" [brown standard poodle} running through the tall grass on the track to the "back 40" on our farm[ette], followed enthusiastically by my current snuggle companion "Maggie" [black and white parti-colored standard poodle coming in currently at about 50 lbs, so still too big to come with me to the new facility]. Thankfully I found an old note that indicated York grieved for about 2 months after we lost his original companion (yep, another standard poodle). I'm glad that they are less brittle than their human mom, and I know my husband takes excellent care of them. I'm encouraging him to get a little more touchy-feely and "make much of them" whenever he can. Advice from a wise riding instructor from some time in years past.

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@ajh5285

Your living situation sounds very much like mine (close to Madison but still managing to be in "farm" country).
Cravings -- opinions seem to be divided as to whether they are "telling" us anything useful, although I could swear that plain old iodized Morton's salt does seem to have satisfied the salt craving even better than the LiteSalt my oncologist wanted me to use for my "Chemo Feet / Venous Insufficiency" post Chemo complication or the Himalayan pink salt I really like.
Pain -- again sounds as if we have more similarities. I do have an incidental gall stone found on my last scan, which in the setting of pancreatic cancer is advised to be watched & ultrasound ablated if, I guess, it becomes unbearable. Either way I'm glad to have a plausible explanation for the occasional stabbing pains under my rib cage on the right side.
And yes, I've done a sing-along Messiah a couple of times, once in the tiny local church in the Chicago suburb where I grew up (my mother was still alive) and again at a Midnight Mass in Madison. Very satisfying. Wish I could still carry a tune!

I like Vivaldi, but find that with so many works of Handel's to explore (he is reputed to have composed more music than the 3 B's combined!) I don't seem to get around to other composers, except when YouTube ponies them up for me!

I've cleared the Social Work hurdle and so am, I think, "good to go" regarding the planned move.

Take care, and best wishes.

Below, I've pasted a photo that represents Joy to me. It's my late still sorely missed "York" [brown standard poodle} running through the tall grass on the track to the "back 40" on our farm[ette], followed enthusiastically by my current snuggle companion "Maggie" [black and white parti-colored standard poodle coming in currently at about 50 lbs, so still too big to come with me to the new facility]. Thankfully I found an old note that indicated York grieved for about 2 months after we lost his original companion (yep, another standard poodle). I'm glad that they are less brittle than their human mom, and I know my husband takes excellent care of them. I'm encouraging him to get a little more touchy-feely and "make much of them" whenever he can. Advice from a wise riding instructor from some time in years past.

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I love the picture of your dogs! I'm always surprised how big standard poodles can be. I bet they enjoyed running around outside. I'm so glad you have a comfort snuggle pup to be with you. It amazes me how they know something is up. I have a cat, Grayce & since I started chemo in October she has been like a burdock, always stuck to me! That's okay she does purr alot & I had read the frequency of a cat's purr is suppose to help heal, wouldn't that be great!
Thanks for the info on Handel. I didn't know he was so fluent in all those languages. I also didn't know he had written so much music. He must of dreamed music & had it in his head all the time. Must be something to be such a prodigy. That's nice you experienced 2 Messiah sing a longs and one with your mom. I'm glad I have the memories because I can't sing like I used to, just don't have the stamina.
My grandma had a sister that lived near Madison in Blue Mound or Blue Earth, something like that. I never was there but I saw pictures. You have beautiful country where you live. It was a big deal for my parents to take us to Madison to visit the World Dairy Expo always in October. I grew up on a dairy farm so that's why we went! The closest cities to me are Sheboygan & Plymouth -World cheese capital!
I'm glad to hear you found a place & cleared the Social Work issues. I found out about Social Workers when my dad needed to go for PT after having a stroke. They sound so helpful but I was so naive at the time, it would be different now! I'm sorry you won't be able to take your dog along. Maggie would sure be a comfort to you.
I had to chuckle when you talked about chemo feet. Today was the worst my feet have felt since I've had the chemo feet sensation. They were very tingly & numb, my feet felt huge! I should try some of the salt you were talking about.
I made some Muddy Buddies/Puppy Chow for my sweet craving. Well, that cured it but I don't want to see my glucose number! This past week I had some extra energy so I made Rhubard Freezer Jam. It has of course rhubarb, strawberry jello & sugar. I put in half the amount of sugar, I don't mind the tart of the rhubarb & it turned out ok. Only made about 5 cups, which was enough. I then deceided to tackle this huge zucchini that I have been looking at for a couple of weeks. I wanted to grate it up & put in the freezer. It didn't take as long as I thought, thank goodness for food processers! I thought I was being so smart but all of this caught up with me and now I'm tired out! Best of intentions.
I remember someone else with pancan had a gallbladder attack in between their chemo and had to have surgery. I sure hope nothing like that happens to you. At least you know what those pains are about.
My daughter will be coming for Labor Day. She wants to fry out, she said she has hot dogs. That's a big no-no processed food but I'll probably have one. We will also fry some chicken & hamburgers. I have a head of cauliflower & I have heard of people slicing the cauliflower into thick "steaks". I will have to think about that!
I hope I downloaded the picture of my comfort kitty, Grayce. She was a kitten on my parents farm 8-9 years ago. My son & daughter were helping unload hay. They told me,"There is this cute gray kitten and no other cats play with her & Grandpa doesn't know who the mom is either". Well I saw her little face and she came home with me. My husband was never a cat person but he sure likes Grayce.
I do like conversing with you and if it helps you in any way I am happy to do this. Again I'm thinking of you and take care. Stay cool!

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