Update from Linda and Jim OHSU

linda1120

We are very pleased with how Dr. Dolan and his staff have taken over and are co-ordinating Jim's appointments and tests. We are going back to Portland for a endoscopic ultrasound and Jim's aortic valvoplasty on the 8th of November. Jim will have completed 28 days of IMRT radiation and two sessions of chemo. We are anxious to see the results of the chemo and radiation on the cancer.

Dr. Dolan sent me home armed with all of the information about the MIE with diagrams and very specific instructions regarding preparation and then what to expect. He also sent me home with a bundle with drawing renditions of the surgical procedure. He believes Jim is a perfect candidate and says he will do well. He says he is not too concerned about the celiac nodes being active, but is if the portal node is. I am presuming the EUS will tell us more. This test will give us a more definitive answer as to how invasive the cancer is and they will get some biopsies from nodes.

I posted regarding our consultation with Dr. Dolan and his staff on the list titled going to Portland for second opinion. Dr. Dolan and his team do 1-2 of the MIE's weekly and their mortality rate is very low. We both feel very comfortable with he and his team, which includes a thoracic surgeon.

Jim and I have been having a lot of heart to heart talks about the future and some of our children are upset and saying that we aren't being positive. When we have been told my husband has about a 35% chance of survival for five years we HAVE to talk about the possibility of him not surviving. I have been extremely strong and positive and broke down today with one daughter and it didn't go well. My other daughter doesn't want to hear any of the details, is now at least being helpful and stops by, but doesn't want to hear about her dad's medical situation. I am a very positive person, but am also realistic and need to know my husband's wishes if he doesn't survive. He says maybe we should just keep these talks between the two of us. I grew up in a family with so many secrets and hate them and try to be open. I would appreciate any advice from any of you as I am sure some of you have come up against these situations.

Thank you,

Linda

sandy1943

Hi Linda and Jim, In my
Hi Linda and Jim, In my journey I have been fortunate to be able to open up to my children and family and have had positive feedback from them. It would be hard not being able to do this. my husband and I have faced my journey with the facts but also thru prayer and being positive. I was dx in Nov, 2007--finished surgery and treatment and was cancer free from Sept 2008 until now. I am going today to find out the results of pet scan. My last ct showed new problems. Once again my family Is wanting to know everything.
Just remember to stay strong. I was stage 111 w. 2 lymph nodes. God brought me this far. I have had three wonderful years, so it's been worth it all. I am determined that no matter what the results are today, it's not over. I've spent 67 yrs. and want to be here for whatever God allows.
Love the positive attitude! I pray your children will except the illness and be willing to educate themselves, so they can be more supportive, but everyone handles things differently.
You are in my prayers. Sandra

sal314

So Glad You're Having Such Positive Experience!
Sounds like your are definately in the right place with the right doctors! I will be praying that all goes well with Jim's tests and procedures!

As for being open and honest with your children...I can say as the only adult child, I wish for nothing more than for my parents to be open and honest with each other and me about my fathers situation. My parents have yet to talk about the inevitable. My mother is willing, wanting and needing to get all their business straightened out. My father still will not go there with her. It has caused such stress for her and in turn on me as well. I worry so much about them both.

I don't know how old your children are (I'm 44), but I for one would be handling my fathers illness so much easier if there were just simple lines of communication. I know it's not easy to talk about, but it would be so much easier for my mother and I to know what my father's final wishes are. We are now 7 months out from the time of his diagnosis and though he is doing extremely well, you never know when it can turn and head downhill fast! He is still refusing to talk about finances, funerals or anything related to cancer. Ugh.

Though your children may not like your honesty now, I'm sure in the future when they are able to look back, they will appreciate the fact that you were open and honest with them. I'd give anything to have my parents be that way with me! I think you are definately doing the right thing. I believe you can and should be able to talk about worse case scenarios, yet still hope and be positive. To me they are not mutually exclusive!

You and your family will be in my prayers!

Blesings,

Sally

stepmj

Communication
Hi Linda -

I just lost my Dad to EC so I can relate to where your kids are. It is important for them to remember that this is not about them, it is about their Dad and doing everything they can for him during the time they have left. They have a choice to make - the time they have left with their Dad can either be painful or precious - I hope they choose precious. Here is my experience.

My Dad was diagnosed in July 09 at age 84 and lost his battle Oct 1 2010 (we lost Mom 5 years ago – I’m 47 yrs young). Dad did not even entertain the possibility of losing the battle (dying) until about July 2010 when the chemo stopped working and he received SIR-spheres for the mets to his liver. But he still did not talk seriously about dying until the doctor recommended hospice. Until that point, Dad was fighting the good fight and I don’t blame him for not wanting to talk about losing – I just followed his lead. Fortunately he had about 5 weeks in hospice where the communication totally opened up.

Dad got there first – able to talk about dying – then, once I got past the uncomfortable, unpleasant, and poor-me part, we were able to talk together about dying and how we both felt. He gave me lists of things to do and people to contact both before and after he died. We even talked about the food to serve at the reception after his funeral, what he wanted to be buried in, who he wanted to give certain items to, and so on (he wanted to make sure I got the bird bath and my brother got his bowling ball He gave me things that I may not have otherwise found until after he died - like pictures, items from his military service, hobbies, and so on. When he gave them to me he was able to share memories and information - we actually had a lot of good times during this really bad time!

We talked openly about his care (I was his primary caretaker) and what he wanted and why not – in the last weeks he did not want to be medicated, he did not want anything that would prolong his life...it was hard to hear but I understood and honored his wishes. The day he died I was at his side helping him along - it was the most painful of all experiences for me – but it wasn’t about me. As it turns out, “the end” was some of the most precious time we ever spent together and I’ll treasure the memory forever.

Your husband has you to share his thoughts and fears with but I think if your kids choose not to participate that they are cheating themselves and missing an opportunity for closeness that they will never get back.

Enough babbling, my main point to your kids is that they follow their Dad’s lead – since he is ready to talk now, they need to join him on the journey now – even though it will be uncomfortable and unpleasant to start with – in the end they will be glad they did. The EC monster is mean and terrible but that doesn’t mean that we can’t find some peace in spite of it. I wish all the best to your family – you’re in my prayers.
MaryJo

linda1120

stepmj said:

Communication
Hi Linda -

I just lost my Dad to EC so I can relate to where your kids are. It is important for them to remember that this is not about them, it is about their Dad and doing everything they can for him during the time they have left. They have a choice to make - the time they have left with their Dad can either be painful or precious - I hope they choose precious. Here is my experience.

My Dad was diagnosed in July 09 at age 84 and lost his battle Oct 1 2010 (we lost Mom 5 years ago – I’m 47 yrs young). Dad did not even entertain the possibility of losing the battle (dying) until about July 2010 when the chemo stopped working and he received SIR-spheres for the mets to his liver. But he still did not talk seriously about dying until the doctor recommended hospice. Until that point, Dad was fighting the good fight and I don’t blame him for not wanting to talk about losing – I just followed his lead. Fortunately he had about 5 weeks in hospice where the communication totally opened up.

Dad got there first – able to talk about dying – then, once I got past the uncomfortable, unpleasant, and poor-me part, we were able to talk together about dying and how we both felt. He gave me lists of things to do and people to contact both before and after he died. We even talked about the food to serve at the reception after his funeral, what he wanted to be buried in, who he wanted to give certain items to, and so on (he wanted to make sure I got the bird bath and my brother got his bowling ball He gave me things that I may not have otherwise found until after he died - like pictures, items from his military service, hobbies, and so on. When he gave them to me he was able to share memories and information - we actually had a lot of good times during this really bad time!

We talked openly about his care (I was his primary caretaker) and what he wanted and why not – in the last weeks he did not want to be medicated, he did not want anything that would prolong his life...it was hard to hear but I understood and honored his wishes. The day he died I was at his side helping him along - it was the most painful of all experiences for me – but it wasn’t about me. As it turns out, “the end” was some of the most precious time we ever spent together and I’ll treasure the memory forever.

Your husband has you to share his thoughts and fears with but I think if your kids choose not to participate that they are cheating themselves and missing an opportunity for closeness that they will never get back.

Enough babbling, my main point to your kids is that they follow their Dad’s lead – since he is ready to talk now, they need to join him on the journey now – even though it will be uncomfortable and unpleasant to start with – in the end they will be glad they did. The EC monster is mean and terrible but that doesn’t mean that we can’t find some peace in spite of it. I wish all the best to your family – you’re in my prayers.
MaryJo

Communication
Mary Jo, thank you for your wonderful post. It is good to hear this issue from a "child's" point of view. Our five kids range from 45 to 39 years old. My husband's oldest is estranged from him and it breaks my heart. I have let her know what is going on with her dad. I am hoping something good will come of his disease. Three out of the five are supportive,one is great, but one is in denial, the other doesn't want to talk of anything but positive, and the fifth hasn't called and his phone isn't working. As William said, they need to grow up! I need all of them right now while their dad is going through treatment and we are reeling from the Stage III diagnosis. HE NEEDS THEM! Our son and family are coming up from California next month so that is something we are really looking forward to. He and I can really talk openly and honestly so that will be helpful. I pray to God that my husband survives this cancer, but we have to talk about the possibility he won't. I told our daughter in Texas she needs to come out for his surgery in December and she is doing everything she can to be here. My daughter lives here and has started to turn around and be here for us. She really has difficulty talking about her dad being so sick, but has told him she is devastated by the cancer. She has been great to help out with our dog when we have to go out of town.

I am so sorry you lost your dad, but it sounds like you both really had precious times together once you were able to get beyond the uncomfortable stage of talking. You really gave him an incredible gift by being so open and loving when he needed you most.

Jim is 68 yrs old and we are thinking positive and hoping for the best and planning for the worst. If it comes to it, I will be open and honest with the kids and let them know how much he needs them to talk about the end of his life as well as the present time.

Thank you again for sharing.

Linda