Our journey - DH has Pancreatic Cancer

[luvmarypoppins]

Wow Amy, you did a great job!! Way to go girl Praying for you and Mike. I will read the thread after my surgery. Hopefully I will be home in about a week. Blessings and prayers always.

 

[luvmarypoppins]

Just wondering how things are going? Mike and you are in my thoughts always.

 

[ameraumi]

Awww, thank you for thinking of us! How are YOU doing????

Things have been going as well as can be expected. Mike is tolerating the treatments better this week. He was pretty sick on Monday even before we left the hospital. He did his normal night of come home and go right to bed.

When we talked to the Radiation Oncologist on Wed she said everything is looking good. Mike was a little worried because his urine was getting a tad dark again but she did not seemed worried about it. I am guessing it is just one of the side effects of the radiation.

His hemoglobin is still low - 9.1. So he has to have injections of Aranesp to help boost it.

And I have been a crazy fool filling out the SSDI info. We got a call today from the local office that she received the information and is sending out requesting the medical records. She also took Erin and Austin's info so she could do the children's benefit application. She said there should be no reason this is not approved but if for some reason it is denied she strongly urges us to appeal it. We will have to according to LTD paperwork - which reminds me I have to get that finished this weekend.

 

[TeresaNJ]

I will keep you all in my prayers.

 

[Mackey Mouse]

I will be shocked if he is denied, but if he is... you appeal immediately..

PC is not a good cancer to get, I hate to use words that truly describe how bad it is, but I cannot imagine them denying someone disability who is battling this cancer..

Hugs Amy... I am here for you.

 

[ameraumi]

Marsha, I know what words you want to use. I hate saying it to... death sentence. *shudder* I know the SS rep even said she would be surprised if he was denied.

Today has been better. He has not been sick *knock on wood*. I took an extra anti-nausea pill with us and had him take it on the way home. I think that may have helped. He did eat a little supper and went right back to sleep.

I am worried that he lost weight. But I am going to look into the Nestle Benecalorie stuff and have him try it. Anything to help!

 

[Elfstar]

Oh, Amy, I'm keeping you both in my prayers. When Jim applied for SSDI, they saw the ALS diagnosis and approved it right away. I hope it's that easy for you two, too. And every day you two still have may be a day closer to when something can be found to help PC.

Susan

 

[Mackey Mouse]

I know you know Amy.. hugs. I am sure the papers will go right through....try not to worry and just know that some of us have been there before you and had no issues, I cannot see them denying one case and allowing others.. truly..

Let me know what you think about the benecalorie.. I am going to order it too... and see how it works for Tom. It has not been great here hence why I was up so early....battling this cancer daily is not easy.

I am here for you anytime you need anything..

Marsha

 

[ameraumi]

One of my friends mentioned something too me and I am going to ask about it. She said that if I could his dr to write the Benecalorie out as a Rx then I could use it towards medical expenses on taxes. The cheapest I found a case of 24 was $36.99 so it will add up in costs.

 

[ameraumi]

We met with the Radiation Oncologist on Wed. Mike mentioned his urine was darker again and I have noticed there are days he looks more jaundice. He looked at his bilirubin count and saw it was up to 3, almost doubled from last week. So she was afraid his bile duct was blocked and wanted a ERCP done, and possible stent placement. But the dr would perform it wanted a current CT scan. We stayed later at the hospital for it and got the results yesterday. The bile duct is NOT blocked so we are not sure what the jaundice is from. But we also found out that the tumor has slightly decreased in size and the lymph nodes are remaining the same size. So a little encouraging news!

 

[luvmarypoppins]

Hi Amy, Glad for the good news, step by step, one day at a time. I like to cling to the good news too. Keep strong. You are doing a great job. My heart and prayers are with you and Mike. I will see the radiation oncologist for the lst time on thurs. so we willl get her insight and see what she says. Blessings to you both always

 

[mblc14]

I know that I am very new to these boards and posting but, my thoughts and prayers go to you and your family. I visit these boards quite often, but usually just the trip reports and had no idea of this thread and just found it today as I have been sitting in the waiting room for over 4 hours as my Dad's PC and spleen are being removed. He has been lucky thus far as it is not adenocarcinoma and appears to be ok for the time being, but have read enough to know that it will be back, and probably worse next time, even though we are just at the beginning of this journey. A very sincere and heartfelt thought and prayer go to you and I wish nothing but the best for you and your husband.

 

[Mskanga]

I really do hope that SS does not give you a problem , I tried to get SSI for my daughter when she was diagnosed and she was flat out denied because since she is a minor and a dependent of my husband , he makes too much money for her to qualify. Forget that I had to quit my job to care for her , that she has a prosthesis , permanent side effects that the chemo left behind and physical limitations , and that we had four times the amount of expenses trying to get treatment ,they don't care about that. And they told me to apply again when she turns 18 because she won't be considered a dependent and my husband's income will not be taken into consideration. Sickening , isn't it ?
And YES I HATE CANCER !!!!!
I am glad that at least you are getting small good news , celebrate the small victories no matter how insignificant they seem. Hang on my friends....my prayers remain with you.

 

[ameraumi]

I have Mike at the local ER right now. He has been sick on and off since last night and spiked a temp a little while ago. We called the after hours dr and they told us to come here and get him on IV fluids and check his blood counts. They were low Monday and I am worried at how low they are now.

I'll keep you posted as I hear something.

 

[luvmarypoppins]

Prayers for Mike, you Amy and the Family. I pray you will know Gods very near presence and peace in the midst of the storm. Blessings to you both always.

 

[karen l]

Amy, you and Mike are in my prayers. I know how tough it is for you & wish you both the best.

 

[ameraumi]

We did not get home until 11:30 and I am one tired gal today. I have my helper coming in early so I can rest and get a few things caught up before we leave for Mike's appts.

Mike was dehydrated. His counts all look good, so no worry about a bacterial infection. We will talk to his Oncologist about it more today when we see her.

 

[ameraumi]

Boy, what a week. I am so glad it is over!

Mike was really weak all week. I actually had to use a wheelchair on Monday for Mike and that is not like him at all. His Oncologist gave him a Z-pack just to be safe since he was starting to get a sinus headache and Austin (DS) was getting over one. All his counts are looking good so this coming Monday will be his last double treatment and then he will get a month off. I am looking forward to that so he can gain strength and weight back.

We also got news he was approved for SSDI. That is a huge relief and I know it will put Mike at ease now.

And on top of it all I started feeling crappy Thursday morning. I went to the dr and was told it probably viral but my lymph nodes were swollen so she put me on an antibiotic. I am starting to feel better now and resting as much as I can.

 

[Mrs. M. Mouse]

Amy it sounds like this past week has been quite rough for sure! You guys are all still in my prayers and I hope you get enough rest to get over your virus. take care and thanks for the update
Allie

 

[luvmarypoppins]

Amy, hope you and Mike are both feeling well soon. I too was sick with a virus all week end, throwing up for 2 days which I caught from oldest ds. All I had was gingerale and distilled water ice cubes, so the terible diet went well, I had nothing.

So glad you got the approval. That is such a relief and good news, So much less to have to worry about!!

Sending continued prayers for you all.