How fast it all changed.

[rodeo65]

Looks like DH is being discharged today or tomorrow. We had a meting this afternoon with the social worker and home care nurse. There are a couple of pieces that need to be put in place before he comes home, but they think that will be a fairly quick process. I just came home to finish a quick go over on the floor in the dining room where his bed will be placed and get him some clean clothes.

We had a fairly major financial blow today. We had refinanced our mortgage in September. For the seven years prior with the old mortgage and for a decade before that with the mortgage on the prior house, we carried critical illness and life insurance. Today I went to activate it to find out we no longer have it as of the re-fi. The woman who did the paperwork said we "waived" the insurance. Which we would never have done. We have always carried it and would never have just decided to stop at this point. I've asked her to show the documentation showing where we waived it but according to our lawyer that's irrelevant. Apparently we have to opt in, not opt out.

I absolutely remember the conversation around it - confirming it included critical illness, and fully expected it was included and was part of the payment package. The bank completely redid their website a few months ago so I didn't really pay attention to the fact that the portion covering insurance wasn't the same. Plus we had a different mortgage product and just figured this was how it looked now. It looks like we're screwed in this regard. Just not what I needed right now. My husband is joking that I need to call one of the local news watchdogs and get them on it. Sure, lets do that.

 

[sk!mom]

Looks like DH is being discharged today or tomorrow. We had a meting this afternoon with the social worker and home care nurse. There are a couple of pieces that need to be put in place before he comes home, but they think that will be a fairly quick process. I just came home to finish a quick go over on the floor in the dining room where his bed will be placed and get him some clean clothes.

We had a fairly major financial blow today. We had refinanced our mortgage in September. For the seven years prior with the old mortgage and for a decade before that with the mortgage on the prior house, we carried critical illness and life insurance. Today I went to activate it to find out we no longer have it as of the re-fi. The woman who did the paperwork said we "waived" the insurance. Which we would never have done. We have always carried it and would never have just decided to stop at this point. I've asked her to show the documentation showing where we waived it but according to our lawyer that's irrelevant. Apparently we have to opt in, not opt out.

I absolutely remember the conversation around it - confirming it included critical illness, and fully expected it was included and was part of the payment package. The bank completely redid their website a few months ago so I didn't really pay attention to the fact that the portion covering insurance wasn't the same. Plus we had a different mortgage product and just figured this was how it looked now. It looks like we're screwed in this regard. Just not what I needed right now. My husband is joking that I need to call one of the local news watchdogs and get them on it. Sure, lets do that.

Oh my gosh! I'm so sorry. The last thing you need is more stress.

 

[gillep]

I am so sorry of the added financial strain, that's just terrible, I am angry for you. Sending lots of positive thoughts and well wishes to you and your family.

 

[manning]

The will to live and fight back is amazing. I survived a 5% situation. Doctor said I wouldn't make it. Wife told him he didn't know me.

With the help of her (my sore butt and her sore foot) I did.

Hang in there!

 

[Dan Murphy]

My husband is joking that I need to call one of the local news watchdogs and get them on it. Sure, lets do that.

Absolutely, Radio. I agree.

Continued prayers for you all. 's

 

[rodeo65]

So yesterday afternoon finally brought the oncology consult. Which is still inconclusive. He has cancer in his liver. They did not get enough tissue to stain to determine origin which is why he had a second biopsy last Friday. Waiting on those results. The oncologist said adenocarcinoma. Which she says is a glandular cancer more likely to have originated in the colon than pancreas, but she still thinks the pancreas is the origin as there is a mass there also?!?! He is waiting for a colonoscopy and endoscopy so didn't come home yesterday, may not today. Depends on when he is scheduled. I am really hoping for tomorrow because if he doesn't get it by tomorrow, then I'm guessing not until next week because of the Easter weekend. So that will be three weeks from initial ER visit and still no firm diagnosis nor treatment plan. And then I assume a fourth week waiting for those results. Meanwhile - it's just growing away, unchecked.

He has a blood clot at old the IV site in his arm, so blood thinners and antibiotic which is playing havoc with his stomach. He is refusing to take it any more. Said he just rocked from 11 pm last night and was still doing so when I got there at 9 this morning. We're waiting for the doctor to order a different antibiotic. I don't understand why he can't have an injected one and bypass the stomach entirely.

I have a call into our lawyer to see what might be possible with the bank if anything. I need them to prove to me that we waived insurance, because we would never have knowingly done so. We've had it for more than 17 years. We would never have just stopped it. In fact we requested it and confirmed it included critical illness. My position is they screwed up and didn't include it (not allowed as I understood it - as far as I knew we either had to take theirs or provide proof of ours which we didn't do.) So if they made the error, then we should just be able to have it retroactively reinstated and pay the premium from September to now and then have the benefit available. Of course they will laugh at that, but I have to try. Other than that we have life, no other critical illness. Overall highly frustrating.

 

[Darcy03231]

So yesterday afternoon finally brought the oncology consult. Which is still inconclusive. He has cancer in his liver. They did not get enough tissue to stain to determine origin which is why he had a second biopsy last Friday. Waiting on those results. The oncologist said adenocarcinoma. Which she says is a glandular cancer more likely to have originated in the colon than pancreas, but she still thinks the pancreas is the origin as there is a mass there also?!?! He is waiting for a colonoscopy and endoscopy so didn't come home yesterday, may not today. Depends on when he is scheduled. I am really hoping for tomorrow because if he doesn't get it by tomorrow, then I'm guessing not until next week because of the Easter weekend. So that will be three weeks from initial ER visit and still no firm diagnosis nor treatment plan. And then I assume a fourth week waiting for those results. Meanwhile - it's just growing away, unchecked.

He has a blood clot at old the IV site in his arm, so blood thinners and antibiotic which is playing havoc with his stomach. He is refusing to take it any more. Said he just rocked from 11 pm last night and was still doing so when I got there at 9 this morning. We're waiting for the doctor to order a different antibiotic. I don't understand why he can't have an injected one and bypass the stomach entirely.

I have a call into our lawyer to see what might be possible with the bank if anything. I need them to prove to me that we waived insurance, because we would never have knowingly done so. We've had it for more than 17 years. We would never have just stopped it. In fact we requested it and confirmed it included critical illness. My position is they screwed up and didn't include it (not allowed as I understood it - as far as I knew we either had to take theirs or provide proof of ours which we didn't do.) So if they made the error, then we should just be able to have it retroactively reinstated and pay the premium from September to now and then have the benefit available. Of course they will laugh at that, but I have to try. Other than that we have life, no other critical illness. Overall highly frustrating.[/QUOTE]

QUOTE]

If you don't get any resolution here, and truly believe either the closing attorney or the bank screwed up, you can file a complaint with either the bar association or the banking commission and have them investigate on your behalf. Sometimes things get resolved more quickly when a government entity steps in. Good luck.[/

 

[fhtpdw20]

Same diagnosis as my DH. His was stage 4. Just to give you an idea of what your DH might have to initially look forward to: Chemo (they gave DH a drip of medication before the actual chemo drug to combat nausea) out patient, then a 4 day continuous iv drip of another chemo drug at home with 28 straight days of radiation as the initial treatment. The Drs. surgically implanted an IV port under the skin so that they didn't have to do the IV in the vein each time. Then it was every 3 weeks to have chemo drug followed by a neulasta shot. The way it affected my DH, the first week he would be a bear to live with, second week he would sleep a lot, and the third week he would be his normal self. Then the cycle would start again. As the counts come down the tumor shrinks. In five months he was schedule for surgery to remove esophagus and rewire digestive system. The good news was the tumor was gone. The biopsy during surgery of the original area was cancer free but the bad new was they found a spot on his liver and stopped the surgery. The Drs. did an MRI to prepare for radiation on the liver but it came back clear and showed an area on his lung. The next MRI showed both clear. So the chemo routine continued and for a year he was winning. Then he started to have balance and eye problems. The stomach cancer was no longer the issue but the cancer settled in the pituitary gland in the brain. I am not trying to scare you, but prepare you. Every patient reacts differently so this may not be anything like what you will experience. I am praying for the best outcome for your family. You are now on a roller coaster ride where you will have highs and lows. Enjoy the highs and take the lows one day at a time. Also know that you will find plenty of support here. We care.

 

[2China2009]

Where to start. You have gotten some great info and support. If your DH does have pancreatic cancer with mets to the liver he is likely already stage 4. I am oncology nurse with hospice experience. I in no way want to be negative, but prognosis is poor usually 12-18mos. There is chemo that can be done, but will not extend life. At this point things will be palliative which means to control pain and have the best quality of life. Since he has been sick with weight loss it is very unlikely he will regain the weight as the disease is already eating away. His high heart rate is due to uncontrolled pain not anything heart related. Pain control is critical for this disease. You need to make sure there is a plan in place for pain control and oncology will be able to manage this. Start making memories now as he feels better. Make sure you know the in and outs of his business, his passwords etc. Do you know if his business is profitable. Does he have any other business guys that also does what he does? I say this b/c I had a hospice patient that owned his own business and his wife called me one morning in tears stating that she did not know anything about his business or any passwords. His son came over and we all met. I told the patient that he had to let his son know everything about the business and all the passwords etc now as the patient was dying. Come to find out in the end the patient was finishing a project, but he got too sick. The wife ended up owing $20,000 b/c he had not been honest with her. She was a LPN for a MD office and made nothing. In the end the story was tragic all around, but having the gall not to get your business in order when dx is inexcusable. You need to get as much done now as your husband has his mental faculties together. Life insurance,will,finaces. Making sure you are on all of the accounts. I know this all sounds horrible,but time and time again this is what happens when families are thrown into this horrible illness.

 

[LSUmiss]

Where to start. You have gotten some great info and support. If your DH does have pancreatic cancer with mets to the liver he is likely already stage 4. I am oncology nurse with hospice experience. I in no way want to be negative, but prognosis is poor usually 12-18mos. There is chemo that can be done, but will not extend life. At this point things will be palliative which means to control pain and have the best quality of life. Since he has been sick with weight loss it is very unlikely he will regain the weight as the disease is already eating away. His high heart rate is due to uncontrolled pain not anything heart related. Pain control is critical for this disease. You need to make sure there is a plan in place for pain control and oncology will be able to manage this. Start making memories now as he feels better. Make sure you know the in and outs of his business, his passwords etc. Do you know if his business is profitable. Does he have any other business guys that also does what he does? I say this b/c I had a hospice patient that owned his own business and his wife called me one morning in tears stating that she did not know anything about his business or any passwords. His son came over and we all met. I told the patient that he had to let his son know everything about the business and all the passwords etc now as the patient was dying. Come to find out in the end the patient was finishing a project, but he got too sick. The wife ended up owing $20,000 b/c he had not been honest with her. She was a LPN for a MD office and made nothing. In the end the story was tragic all around, but having the gall not to get your business in order when dx is inexcusable. You need to get as much done now as your husband has his mental faculties together. Life insurance,will,finaces. Making sure you are on all of the accounts. I know this all sounds horrible,but time and time again this is what happens when families are thrown into this horrible illness.

Unfortunately this was pretty much my experience with my dad last yr. I wish someone would have explained treatment options more thoroughly then. We knew prognosis was bad but with aggressive treatment they made by sound like it would prolong life at least some. I now wish we would have chosen hospice sooner & enjoyed the time we had left. It’s such a hard decision b/c you’re instinct is to fight. And not doing treatment felt like giving up. He had lymphoma 12 years before so aggressive treatment cured that cancer so even though pancreatic is much worse, we were still optimistic.

 

[gemini2727]

Unfortunately this was pretty much my experience with my dad last yr. I wish someone would have explained treatment options more thoroughly then. We knew prognosis was bad but with aggressive treatment they made by sound like it would prolong life at least some. I now wish we would have chosen hospice sooner & enjoyed the time we had left. It’s such a hard decision b/c you’re instinct is to fight. And not doing treatment felt like giving up. He had lymphoma 12 years before so aggressive treatment cured that cancer so even though pancreatic is much worse, we were still optimistic.

So sorry LSUmiss

 

[mjkacmom]

Unfortunately this was pretty much my experience with my dad last yr. I wish someone would have explained treatment options more thoroughly then. We knew prognosis was bad but with aggressive treatment they made by sound like it would prolong life at least some. I now wish we would have chosen hospice sooner & enjoyed the time we had left. It’s such a hard decision b/c you’re instinct is to fight. And not doing treatment felt like giving up. He had lymphoma 12 years before so aggressive treatment cured that cancer so even though pancreatic is much worse, we were still optimistic.

My mom was given 12 - 18 months (only because my sister asked), once she started treatment, she never felt good again. Before her diagnosis, she was having some stomach issues, so she started a gluten free diet (celiac runs in our family). She only went to the doctor because she had a lump on her abdomen, and was with her best friend, who is a nurse practitioner, who insisted she see her doctor that day. She took two of my daughters out of state to a dance competition for four days right before we got the biopsy results! She was determined she was going to beat it, we thought there would be good days and bad, but just bad. Two days before she died, I tried to get her oncologist to release her to hospice, he refused unless he saw her (she was in no condition to go anywhere). Fortunately her primary had no problem making that call. She died 4 months after being diagnosed with cancer, surrounded by her kids, husband, best friend and grandchildren. I wish she felt better during those months. She was at ds’s soccer game 5 days earlier in a wheelchair.

OP, thinking of you and your family.

 

[rodeo65]

DH is home. He was discharged fairly late Wednesday night. That was a little messed up and we they were not able to deliver the bed that night so he spent an uncomfortable first night on the couch. Yesterday, though the be was delivered and once I'd spent 90 minutes at the pharmacy trying to get the P-Card sorted out, we got his medications back into him and got him settled. He seemed to be pretty good yesterday afternoon but last night and this morning were pretty bad for pain and nausea. He is barely eating. He's lost 25 lbs as of last weekend, but I'm sure it's more by now. He can not even manage a half sandwich or a full egg. He asked for so I went and got him Pad Thai last night and I think he got in about three tablespoons.

This afternoon, though I saw the first spark of the old him. I started up his computer and as soon as he saw the number of e-mails that had come in over the past two and a half weeks, he sat up straighter and got busy answering them. I left him at it about 30 minutes ago and he's still going! I hope this helps with his drive and fight! Earlier today he was so down, had so much discomfort and was saying he just couldn't handle it. I think because he didn't get his regular medication schedule from Tuesday night on (took him off blood thinners and something else that night as he had the colonoscopy Wednesday morning) the pain got control. I said this morning we need to be sure to stay ahead of it and even if he thinks he's ok, to keep to the schedule for pain management.

 

[vicwishes]

My heart goes out to you and your family. You’re in my thoughts and prayers.

 

[mjkacmom]

I’m glad he’s home. The biggest help for my mom was pot. She was against it at first, but her attorney (cancer survivor) talked her into trying it, and she said it was a miracle drug. She ended up getting approved for medical marijuana, but passed before her appointment.

 

[BadgerGirl84]

Just checking in to say that I'm thinking of you, your husband and your kids and am reading your updates.

 

[Pea-n-Me]

DH is home. He was discharged fairly late Wednesday night. That was a little messed up and we they were not able to deliver the bed that night so he spent an uncomfortable first night on the couch. Yesterday, though the be was delivered and once I'd spent 90 minutes at the pharmacy trying to get the P-Card sorted out, we got his medications back into him and got him settled. He seemed to be pretty good yesterday afternoon but last night and this morning were pretty bad for pain and nausea. He is barely eating. He's lost 25 lbs as of last weekend, but I'm sure it's more by now. He can not even manage a half sandwich or a full egg. He asked for so I went and got him Pad Thai last night and I think he got in about three tablespoons.

This afternoon, though I saw the first spark of the old him. I started up his computer and as soon as he saw the number of e-mails that had come in over the past two and a half weeks, he sat up straighter and got busy answering them. I left him at it about 30 minutes ago and he's still going! I hope this helps with his drive and fight! Earlier today he was so down, had so much discomfort and was saying he just couldn't handle it. I think because he didn't get his regular medication schedule from Tuesday night on (took him off blood thinners and something else that night as he had the colonoscopy Wednesday morning) the pain got control. I said this morning we need to be sure to stay ahead of it and even if he thinks he's ok, to keep to the schedule for pain management.

It might take a bit to sort out, but work with his team of caregivers to find a medication regimen that works for him to best help control the pain and nausea. Don’t let up on them helping you if he’s still feeling horrible - they might assume he’s doing ok unless you tell them. (And I don’t know what the exact set up is that you have.) He may not feel great, but they should be able to get him feeling better. I think mjkacmom’s suggestion is a good one, although I’m not sure how much it is mainstreamed right now (yet). I doubt they’ll be opposed but they may not have a lot of info to give you is what I mean. Hang in there. I’m glad he was able to eat a little, getting some of his favorite foods is smart. Hopefully he’ll be more comfortable in the bed.

 

[rodeo65]

As always, I thank all of you reading and posting. He has spoken to his oncologist about using CBD oil and she said she had quite a few patients using it with good to really good results. He is hopeful that it will help with the nausea. That seems between the pain and nausea to be the worst of the two. We are going to look into that Tuesday.

Yes, Pea-n-me, the food thing is what I'm working on (aside from listing everything he eats, BP and pulse, meds taken and when.) He asked for cookies yesterday. I bought a package - he managed one. He seems to want some of his favourite kid foods. Grilled cheese, pizza, cookies (not Pad Thai - that's grown up food ) I'm cooking ham, scalloped potatoes and brussels sprouts for Easter dinner, so hopefully that will appeal. He says food doesn't taste the same anymore. Maybe that's why the interest in childhood favourites. Thinking they won't let him down.

 

[SirDuff]

As always, I thank all of you reading and posting. He has spoken to his oncologist about using CBD oil and she said she had quite a few patients using it with good to really good results. He is hopeful that it will help with the nausea. That seems between the pain and nausea to be the worst of the two. We are going to look into that Tuesday.

Yes, Pea-n-me, the food thing is what I'm working on (aside from listing everything he eats, BP and pulse, meds taken and when.) He asked for cookies yesterday. I bought a package - he managed one. He seems to want some of his favourite kid foods. Grilled cheese, pizza, cookies (not Pad Thai - that's grown up food ) I'm cooking ham, scalloped potatoes and brussels sprouts for Easter dinner, so hopefully that will appeal. He says food doesn't taste the same anymore. Maybe that's why the interest in childhood favourites. Thinking they won't let him down.

My mum had weird cravings when on chemo too. Like you, we'd make/buy whatever that craving was. At one point, it was Joe Louis (do they even have those anymore?) so my dad bought a huge amount to stock. Then she went off them (her tastes changed often) and we were stuck with dozens of Joe Louis (I got them in my lunch box for months).

 

[rodeo65]

I think I've seen Joe Louis in more recent years but I do remember them from childhood. He hasn't even started chemo yet. I can't imagine what trying to find food he'll tolerate will be like then.