Our journey - DH has Pancreatic Cancer

[ameraumi]

We will be calling the drs Monday to followup with them on the final decision. They made appts for Mike but he did not think to ask anything about them. MEN! LOL! We also called insurance to find why the IMRT would not be covered and we were told they show no reason why it would not be covered! So we need to find out exactly what the dr found out and go from there.

The news is reporting the Myles Brand announced he has PC. He is the head of the NCAA and former IU President. And for those that follow basketball, he would be the guy that fired IU Basketball coach Bobby Knight. This is pretty big news for IN as people eat, sleep, and breathe basketball here.

 

[Mackey Mouse]

It is on the rise.. PC that is, and if they do not start doing more research on it, it could be catastrophic.

This morning I watched Dirty Dancing, it was on, I could not help myself, and I thought Patrick you are in the battle for your life and those of us who are caretakers or have lost someone to this cancer know exactly what I mean. He is fighting mad and I am glad to see his passion to battle. It does help if you face it aggressively...

Amy take care.... let us know how you are doing.

 

[ameraumi]

Now I am a flipping mess and I am ready to waive the white flag and throw my hands in the air. I am about ready to cry out of frustration.

FINALLY we heard back from the new nurse afer many calls and emails. However, she is telling us the appts are on different days then what was originally scheduled! She is technically out of the office today and emailed us so I shot one right back to her. I just cannot drop everything and be in Indy *just like that*. I have to know ahead of time what the plan is and I hate they are changing days on us without any kind of notice.

So now until I know for sure I have to explain this to my daycare parents that we really do not know which day his treatments start and to have back up for either day to be safe. I cannot start my helper on that day because 1) we have to leave by 6:15am and I have to make arrangements for someone to be here with my own 2 kids and get them to school and 2) I do not want her to come in and start the day with me not here.

Can you tell I am frustrated? I am just a flippin mess.

 

[luvmarypoppins]

Amy, praying for peace for you and Mike. I know you have so much on your shoulders and in your heart right now. I am praying for both of you and the family. 1 Peter 5:7.

I too, have never been able to pick a time for anything either. They just say show up here, get the pet scan here, this time etc. My head spins too. I dont think they see things from the other side of their desks, offices, etc., etc.

 

[afcgirl]

I am so sorry to hear about your DH. I know you don't feel lucky but with pancreatic cancer you are so lucky to have caught it before it reached stage IV. My dad passed away from it 7 years ago. When they found it it had already spread to his liver.

I am praying for you that your DH responds well to treatment. Good luck.

 

[LouDisney]

Sending many prayers your way.

 

[Mrs. M. Mouse]

Amy I'm so sorry about your news. that is very frustrating. I have you and dh in my prayers.

 

[Mackey Mouse]

Amy... just catching up now as my days are wild right now..

So these are my words of advice... you stand your ground. You tell them what works for you and they should accommodate you....like with us.. We are doing radiation 5 days a week in the City.....mornings work best for us so I am riding in with rush hour traffic, but then get out of the city before rush hour back.. So.. one of the tech's who run the machines decides he is going to change our time and calls my home. I am not there, I am in Boston, and when I left, we were scheduled for 11:00am...he changed it to 1:20pm... now that is not going to work for us.. no way..

So we went in that day at that time, Tom said why was the time changed, he said well the machine is too busy at the 11 time.. I said.. well the 1:20pm time does not work for us, so we want what was originally scheduled and if you cannot accommodate us at what was originally scheduled, we will have our treatment at another hospital.... There was more to this discussion, but I stood firm. Guess what, we have the time that we originally discussed 11:00am....What happened to the crowds I have no clue, and if we get there early, they take us early... so I am thinking this was someone trying to exercise some power over us, but was stopped in his tracks... Our doctor and nurse both spoke to him as well..

What I am saying here is speak up.. You have a full time job with people counting on you.. It has to work for you and they should try to accommodate you, but you have to speak up and not allow any changes..

Hugs, I am a pm away..

Marsha

 

[ameraumi]

Keep telling me, Marsha!

I had a phone call from the new nurse today, Kellie. She and Sarah were talking and the more they talked the more they were confusing each other. So Kellie called to go step by step what happened when the appts were made. We figured out where the confusion occured: when the Celiac Block was canceled for Mon. The thought since the Block was canceled the Radiation Dept would change Mike's appt but they left it as Tues. So we are ALL on the same page now. Whew! I also made sure I knew which of the meds Mike is supposed to have and when he is to take them.

I set up a CaringBridge site for Mike to help keep our friends and family updated. It has been a blessing and so many people are leaving Mike messages. I think that will help him get thru this and when he is having a bad day he go back and read those messages and know so many people are pulling for him.

We have gotten a couple of calls from Mike's co-workers. One is working with other team members to get some meals to us when he starts treatments. The other wants to help in any way she can and has said others want to help get Mike back and forth to Indy. I am not supposed to know this, but it was slipped that one of them is working on doing some kind of fundraiser for us. I am not saying anything to Mike about it just in case something falls thru, but it is so touching they want to help like that!

I am finding myself not wanting to watch anything on tv with the storyline of cancer. I was watching Private Practice last night and one of the storyline was of an older gentleman with PC and he wanted to die before the pain set in. OMG, that did me in and I burst into tears and turned the channel fast. I guess this was just one of those weeks where it hit me hard again.

 

[CarolynU]

Good luck with your battle. I remember being exactly the same about TV progs, and wouldn't you know it every time I turned on the TV the plots or documenataries seemed to have a cancer storyline. Hang on in there.

 

[Teacher03]

I'm sending many prayes and hugs your way

 

[Mskanga]

Amy , I can tell you that it doesn't get better , my daughter is in remission now from cancer too but everytime I see something related to it sends me on a crying spree and it's even worse if it involves children.
I will tell you though that you need to stand your ground and make things work to YOUR advantage , not anyone else. We live three hours away from our oncologist and surgeon and when we need to see them I refuse to take an appointment before 12 pm , I have a younger child at home to take care of and I refuse to leave her alone for four hours in the morning before she goes to school , but by the time she gets home my husband is back from work.

 

[ameraumi]

Mike and I talked about the time thing before he left. His thing was let's just take what they give us so we can get the treatments done. But I had to explain to him why we cannot, that we have kids to get off to school and I have to be sure to explain things to my helper. He sees my way now and we will make sure appts here on out meet our time frame.

 

[Mackey Mouse]

"I will tell you though that you need to stand your ground and make things work to YOUR advantage , not anyone else."

Even Kanga agrees with me.. If we did not have anything in our lives, but dealing with this, yeah we can accommodate everyone... but it is not the case. Be assertive....you are his advocate and it has to work for both of you.

Just for added aggravation......did I tell you that we paid out of pocket for one tube of antibiotic salve, $147.50... I cannot remember if I posted this already.. keep in mind we are also paying out of pocket almost $4000 for chemotherapy...

Now can someone tell me again why we pay for medical insurance...why we pay into medicare for all the years we work, when they do not cover anything..

Grrrrrrrrr

 

[ameraumi]

Oh Marsha! You told me you had to pay OOP for the chemo but I did not know about the salve. Is that for the rash? I am so thankful we had not had to face that, just an added co-pay because of how an injection was coded. Insurance is a damned if you do and damned if you don't situation.

We are waiting on papers from Metlife for LTD. Mike called Tuesday to ask for them and his STD case manager asked if he really thought he would be out that long. Mike told her according to the plan we needed to request those in the 3rd month of STD if he expected to be out longer and he wants to be safe. And according to the plan we need to show proof (the application) that he filed for SSDI. I do not want to file for SSDI until we read over the packet from LTD. Grrrr! I will have Mike follow up with them on Tuesday.

ETA: I just got the welcome email for the support group! I know it is going to be tough at times, but I know it is the right thing for me to do.

 

[Elfstar]

I agree with Marsha, be firm with getting appointments that are for YOUR convenience, and don't be afraid to remind them every time a new appointment is set what your schedule is. Eventually they'll get it!

Please know I'm still praying for you both, and hoping things go well for him.

 

[ameraumi]

Now I am glued to the weather forecasts for tonight and tomorrow morning. It looks like we could see some snow and we are trying to figure out if we should stay closer to Indy tonight. I guess we will wait until the noon forecast and make a decision then.

 

[luvmarypoppins]

Amy, keeping you and Mike in my prayers. I am doing the same thing too. My cancer surgery is thurs. and my dh is in calif. and will fly back through las vegas. They are predicting storms here tues and wed. so I hope the plane can land here as its the last flight in on wed. night. My PlanB is to just have one of my ds probably the 19 yo take me to the hospital. Worst case: I just wont be able to see dh before the surgery, This will definetely be on my prayer list big time. If we dont have enough to worry about, we have to worry about the weather too. I know God will work all this out. Blessings to you both.

 

[ameraumi]

We did stay in Indy last night since we had an early morning appt, but now it looks like he should have stayed there tonight. Looks like we are in for a major snowfall but his appt tomorrow is later so the roads should be half way passable by the time he leaves.

Today went really well for his first double treatment. His Hemoglobin was low so he did have to have meds for that. But everything else looked good and he handled the Gemcitabine so much better this week. So far no nausea which is a HUGE plus.

He seemed to do ok with radiation but boy did I have to put my foot down. Marsha, you would have been proud of me. They tried to give him a 9am appt here on out and he was going to accept it! When I saw it I said no way and made him take me back to the tech so we could get it changed. The tech tried to tell me that there was nothing else and I told him we could not be there that early here on out and it HAD to be after 12 noon. Magically 1:45 showed up as available. So he now has the time set for him here on out.

Now I get the fun of watching the weather. A friend of ours is taking him tomorrow and he is a former truck driver so I know he can handle the road.

 

[Mackey Mouse]

Amy, I am proud of you... stand fast and speak up. Remember they are making so much money on his treatment...it is actually scary. They want to treat him there and not have you go anywhere else.

I could write a book, I still may. I think it has been the kindness of strangers that gets me through... People here on the Dis that pray for us or reach out to me and in that group that I belong to, just people helping people.

I have to also say here my team at MGH... I thank God for them.. the oncologist, radiologist and our wonder Nurse Practitioner, I adore them and so does Tom.. I love our surgeon, he is on our team, whenever we need surgery, he is our guy... These people are busy important people at MGH and work with us all the time, it is the little people at MGH that you sometimes have problems with..

Did I tell you all when Tom was admitted to the hospital, it was his second morning, that I caught a nurse making fun of me in the Hall? I spoke with her as they had been giving Tom a hard time about wanting to move to another floor. If I already told this story, sorry. Anyway, no one ever changed his water from the day he came, so I was coming out of his room to get him fresh water, it was right after I spoke to her and she was standing in front of another nurse who was typing and doing hand gestures and I knew it was relating our conversation. The other nurse looked up and said something, she stopped immediately. She turned and looked at me, her face was beet red, and I just looked at her and said where can I get some fresh water for my husband... When she walked away, I turned to the typing nurse and said I would hope she was not making fun of the conversation I had with her in the privacy of my husband's room as that would not be professional.. As she came back with the water, I said to her.. calling her by name, I would hope you were not talking about our conversation in my husband's room... as that would be a violation of our privacy rights and unprofessional... she swore she was not... trust me she was..

The little people who do not make it nice for you and then there are some who go overboard....and are the little people too.... you just cannot figure it out.. I am grateful for any kindness that we receive, so grateful.