Our journey - DH has Pancreatic Cancer

[kimis]

Hang in there! Yes even when we feel alone and like God has ignored us He hasn't. He is there. We may not understand what His plan is but hold on to the faith. God never said life would be fair or easy but that He would not leave us. There are probably more people praying than you even know and all those prayers together will get you all through this horrible ordeal.
It is good news that it hasn't spread. I can't wait to hear the new plan the drs have to get rid of this tumor.
I hope I don't sound all goody goody because I am not. I am speaking from expeirence. I know what it is like to watch a loved one with cancer and feel like God has ignored our prayers. I have done this twice. In both situations I learned that God did hear my prayers so just hang in there.
COntinued prayers.

 

[antmaril]

Amy:

I'm so sorry to hear about this setback. It is good news that the tumor hasn't spread. I will keep you and your husband in my prayers.

Remember, one day at a time.

Marilyn

 

[ameraumi]

I received an email from my sister saying she spoke with a friend of hers that is a nurse at the Dana Farber Cancer Institute. She suggested we ask if Mike is a canidate for Cytoreductive surgery. I guess that is where they remove the spleen, pancreas and gallbladder then do warm chemo drigs on the walls of the organs and abdomin. I emailed the RN about it and heard back that this is one of the options that his Oncologist is looking into.

I also got word last night that was accepted into an online support group for pancreatic cancer caregivers. It could not come at a better time.

 

[CarolynU]

Not the news that you wanted. Hang in there. We are all rooting for you. Cancer sucks big time.

 

[luvmarypoppins]

Amy, I am praying for you and your dh Mike. I know it is so hard to watch your spouse go through this.

My dh says he can't cry for me because he has to be "the strong one" I told him its ol.k. because real men cry.

I know it may seem like God is not there or not listening. I have alot of faith and honestly I dont know where I would be without it trying to deal with this cancer. Sometimes he says yes, sometimes he says no, and sometimes he says wait. I have experienced all of those lately and I am still waiting for my cancer surgery, meanwhile I am in a lot of pain. Waiting for more tests, doctors to figure things out etc. I told dh, Jesus never promised us a rose garden, and he got a crown of thorns. I picture myself going through the dark valley, sometimes Jesus has a flashlight, sometimes he is pulling me kicking and not being too cooperative because I dont like where I am going and sometimes when I am just so tired I know he is carrying me. I pray he will carry you and Mike through all of this, cast all your cares upon him.

Blessings, thoughts and prayers to the both of you and your family.

 

[zalansky]

Amy - more thoughts and prayers coming your way and of course, for your husband. I went through this with my mom but that was ten years ago and there have been more advancements since then...I will pray he can get that surgery and be treated. My heart really goes out to you, I wish i could come through the computer and give you a big hug. i admire your strength in the face of uncertainty. Please know we're here for you whenever you need us.



luvmarypoppins - hugs to you too. I hope you are pain free very soon. i can't begin to imagine what you're going through either by my gosh, I admire you too. Stay strong.

 

[minniebeth]

I'm sorry you are discouraged, please know that you have more prayers here too for you and your husband. Keep the faith

luvmarypoppins, you are in my prayers as well! I have been reading your posts as well.

 

[ameraumi]

I think we are about as ready as we can be for today. I am not sure what they have in store for us so I have planned to be there all day.

We got word yesterday evening that Mike is scheduled for a Celiac Block on the 26th. I hope that helps more with the pain. They put him on a VERY low dose of Oxycontin and that has helped a lot, so much that Mike said yesterday was the best he has felt in a couple of months!

Please wish us luck today!

 

[antmaril]

Amy:

Glad to hear that Mike is getting some relief.

Good luck today.

 

[Mackey Mouse]

Amy.... so glad you got accepted to the group, I hope it is the one I am in, these people are wonderful and we keep each other bucked up....

OK....now what do I say that will be the right words... well I have found there are only words of comfort that I can extend to you right now. You know this is an uphill battle.....a rollercoaster ride that you cannot get off, getting off is not an option. You will stand beside your sweetie and run interference for him, take notes and ask all the questions whether you think they are stupid or not and read everything you can.. Knowledge is power. Tom's treatment is at Mass General Hospital and they partner with Dana Farber, so on the same page. Our doctor, who we love, is the head of the Cancer gastro unit at MGH... he is incredible and we know he has Tom's best interest at heart.. There is a huge team, his surgeon, incredible, his nurse practitioner, we both love her and his radiologist, he is incredible.. we are fortunate to have such a great team working to keep Tom in this battle.

If you have the team in place ready to stand beside you in this battle, or riding the rollercoaster with you, it is part of what needs to be.. Then it will be how he responds to treatment....this past weekend Tom ended up in the hospital, I did update on my request for prayers....that is the first time he has been admitted since his whipple 4 years ago. We took it as a little bump... maybe the ride stopped for a minute like in WDW, but we are riding again and he is ok...

Please know I am a pm away......if you need me.. I do try and check in multiple times during the day..

Hugs to you... stay strong, stay focused, this is your guy and you are his protector....

Marsha

 

[zalansky]

Good luck today Amy, our thoughts are with you both!

 

[luvmarypoppins]

Amy, Keeping you and Mike in prayer today. Blessings to you both.

 

[ameraumi]

If it weren't for the weather this morning we would have made great time and been early to Indy. But noooooo, it finally snowed and then the trafiic around Indy was a nightmare. It took us a little over 2 hours to make a 1 hr trip. The roads were not bad, but it was the drivers who forget ho to drive to drive on the snow.

Mike called the radiology dept to let them know we were stuck in traffic but would be there. They just bumped everyone around since it seemed like everyone was running late. We had to wait almost 2 hrs to be seen, but she spent a good deal of time with us.

We know for sure that the tumor is basically back to the same stage it was back in Oct. Same size, same place, same vein involved, close to the artery again. How in the world can this happen again????? We are LITERALLY back to square one. Dr. Cardenes told us right away what her thoughts were on this and what she is going to the board with tomorrow. Her personal feeling is the surgery is out of the question because there is no way to go in and remove all of the tumor and to her it is unacceptable to leave anything behind. So she wants to tackle it with radiation and more chemo. The chemo will work to enhance the radiation and it will be up to Dr. Chiorean on what chemo drug she wants to do: either back on gemcitabine or a different drug.

We were also told that she tried to get pre-approval from the insurance company for IMRT radiation and they denied it. So we are calling tomorrow to find out why and if we can appeal it. That just flat out sucks and I am furious the ins co did that!

So Mike had another scan and is now marked with lovely black marker. It looks as if radiation will start on the 26th or 27th. But the board is still meeting tomorrow afternoon and we will know on Friday for sure what the plan is.

Sarah came down to chat with us and she gave us some encouraging news. Mike's CA19-9 level had gone down a bit. On Dec 23rd it was over 700, Monday's level was in the 500's. Still not great, but better.

Oh, the Celiac block that was scheduled is being canceled because Mike is doing so well on the new pain meds. In one way I am glad, yet it would have been nice for him to have 1 less pill to swallow.

So I am back to the waiting game. I feel better this time around because I know the drs and I know we have a great team working with us. I do have a lot of worry though, especially hearing the numbers and knowing what I read in my past research. But I know I need to focus on the day and that is what I am trying to do. One day at a time...

 

[Elfstar]

Sending more prayers and wishes your way! Sorry he's had the setback.

 

[Mackey Mouse]

I am glad you updated......one day at a time, do not go into the future, stay in the present and do battle with this beast one minute at a time even..

We are here for you.. and I am a pm away if you need. Sounds like you have a great team in place....the insurance part of it, have you ever read how much I hate insurance. You pay and pay and pay, but when you need them to cover something, they do not want to.. Some actuary, following company guidelines, gets to play God with your husband's treatment.. Appeal it, have your doctors' caseworkers get busy on it and tell the ins co if need be you will hire an attorney and go after them. Hopefully, that will not be the case, but if needed I would hire an attorney to take them on. I am sure what they need is more paperwork to support the treatment, it happens all the time, but do not back down for them, you pay them monthly for this insurance..

Marsha

 

[saremca]

We will be praying for you all.

 

[ameraumi]

Thanks Marsha! I was approved for the Caregiver Grp: Pancreatic Cancer Caregiver_Spring. I hope that is the same one you are in.

One of my daycare mom's told me she has names of two people that are interested in helping me out. I am going to tak to Mike about it, but one of them is her niece and I know I can trust her. It would make things a little easier if I can get someone we know in here for a couple of days a week.

I am a little on edge because we had a message last night from Mike's HR rep. She said she was mailing us a letter that would describe how benefits will be handled if he goes on LTD. It just freaked me out a little and I am going to go into savings mode I think.

 

[julm26]

Just wanted to send you my prayers...my mom battled PC for 4 years until she lost her battle with it in Feb. 2008. Just wanting to let you know i've been in your shoes and have traveled these same roads...make sure you take care of yourself so you can take care of your DH.. and FIGHT THIS BEAST, FIGHT IT LIKE HE.. prayers to your entire family - God Bless....

 

[Mackey Mouse]

Hi Julm.. hugs and glad to that you posted here. It is good to have those who have battled valiantly beside a loved one post so that Amy knows she is not alone.. It is almost a year for you... hugs, hugs, hugs.

Amy, that is the group I will be unless they are starting two groups, which I doubt.. I will welcome you and be there for you. These husbands, wives, brothers, daughters, sons, sisters of a loved one with oancreatic cancer are the greatest group of caretakers, I have the privilege of talking with... They are a wealth of knowledge.. and if you have questions, they have the answers...

Hang in there, and take care of you as well as taking care of him. I am a pm away...

Marsha

 

[frdeb1999]

My thoughts and prayers for you and your husband.