new to this

DanaM said:

Hey Sammy..
Good Morning..
I actually wrote a novel to you this morning after I hit my car into the parking lot thingy where you wave a card to get into the lot... The novel dissappeard when I hit the preview button. I guess that's a good thing for you.:) A friend of mine who posts here, her husband is sick and I'm waiting to hear back from her. Back what seems like many years ago, when its only been months, I had what I described then as "bad days" when this wasn't on my plate and I took those days so much for granted...God forgive me for that.

I hope somebody is laughing here..I told a guy who works for me that I hit the card reader and he was laughing...I'm like what are you laughing at? I'm stressed, been sleeping badly,damaged my car-what is so funny? but realized when I said it, I was laughing too...jeez, the audacity of some people. lolol. But I'm learning to laugh, to find humor in the most despicable of situations. Since he works for me and thought it all funny, I told him to go make a damage assessment on his lunch break, because I wouldn't look at it, and find some wax if its fixable and get to work. (Good thing we're friends)lolol.

Now that I'm done sharing my miniscule bumps, I will tell you that I was afraid of going to Pittsburgh and my husband was very resistant to it, I'm assuming, you both are too for the same reasons that we were. We already had the Division Chief of U of M waiting our table. He skimmed over the part that some people are doing this with tools and a laproscope and said he favored handling the organs manually. As far as "seeing" I could be wrong, but they use more than one camera and are aware that the adjacent organs and lymph nodes need to be checked.

I've seen pictures from a laprocopic procedure, I know that the cameras are powerful and capable of taking pictures that are high quality. If you've done the research, you know that the doctor who does the most, combined with an institution that does alot of esophagectomies, have the best survival rates, as these procedures go.. Dr. Luketich has a publication where he compares the two surgeries-MIE to open thoracic types and found no difference as it relates to surviving the cancer but found differences in survival rates as they relate to the procedure. I think overall the morbidity rate is 3% with open thoracic surgeries vs 1% with the minimally invasive type. In addition, quality of life overall was greater with MIE patients. It's no wonder. Half of this thing is a psychological battle, and the mind has a tendency to follow the body. If you're not feeling good or have a long recovery ahead of you, I don't think anyone would dispute that this will have an effect on the mind and attitude. I sure don't need any more challenges than I already have. I've had a bad head cold at work and have been more than grouchy on occasion because of something so silly.

I was afraid to go too, my support network is here. My dad isn't well and couldn't make the trip to Pittsburgh and I didn't want my mom leaving him to go with us, as she wanted to do. And that's the extent of our family.

But I was more afraid not to go. I knew deep down that it was the right thing to do. Scary? Yes. Inconveniant? Yes. Stepping way outside of our comfort zone? Yes. My husband has had issues dealing with this whole thing, as I have had as well. Everything he goes through, I go through. As my other mom says, the head doesn't go anywhere without the neck. And that's how me and my husband are.

But we're going. I'll stay there as long as I have to. And by God, we're gonna get through this. I really need to focus on how I am blessed, that we were accepted as patients in Pittsburgh, that we're only 5 hours away. (Many folks here in this forum are driving further or flying to get there) and that I have savings to afford the stay in Pittsburgh. Family housing can be obtained near the hospital from 40 dollars to 60 dollars a night there. Yes, we are blessed-we've both been hit by a truck, but Glory be to God, we're headed to shock trauma (so to speak.)

I'm with you, everyone here on this site is with you. I may be fortunate enough to personally meet at least 3 people whose stories are posted in these forums when I go to Pittsburgh. It will be like meeting family. It's only 5 hours away. 2 more hours than driving downyocean. (OC) I live where you do, was 20 minutes from U of M, my support system in place here, scared, afraid, high-anxiety..but I'm going. I'm sure that my other dad will be contacting or posting something for you real soon that will answer better some of the questions that you have about "seeing" inside. But like he asked my husband when he wanted to stay and go to the U of M, "Son, Why would you want to do that to yourself?" We didn't have a good answer... In short, I don't want him to suffer physically, any more than he has to. It's alot to deal with, changing the way you eat and finding out sometimes the hard way, what doesn't work... I don't need an overly extensive physical healing period to deal with. Our doc in MD said, "He should be feeling himself in about 3 months..." 3 months? Mr. Marshall was shopping on day 8, I believe. Wrap it up, Dr. Luketich, I'll take it...

At least one person who posts in this forum had to go into a rehab facility after surgery of the open thoracic type and was so weak. If you're like me and know that half of this again is phsychological, minimize the physiological effects the best you can.

You are never, never, alone. We're all here for you. Post any question, feeling, or rant, and you will find a phethora of folks who have been there and done that, both the t-shirt, cut the sleeves off and tyedyed it and are with you even if they haven't and will continue to be.
God Bless you and your husband. I'll be praying for you both.
Dana

sammy123 said:

Dr. Steven Hochwald, Shands,
Dr. Steven Hochwald, Shands, Gainesville.
Dr. Luketich, Pittsburgh

Hello everyone and many thank you's to each and every one of you for taking the time out of your busy lives to answer questions. I also send many thank you's to Mr. and Mrs. Marshall (Bill) for spending time with my husband on the phone. He is super anxious and you helped him immensely. I was evesdropping but didn't join in because I thought it best that he hear from such a wonderful resource without me "chiming' in as I usually do!!! We are in the holding pattern with Pittsburgh (Dr. Luketich/Chuck), they now have all of our paperwork and we are awaiting a date. We also have a 2nd opinion along with a pet scan lined up with Dr. Steven Hochwald (Shands, Gainesville) who also does the procedure. My big question now is that Dr. Hochwald's standard protocol before the MIE for anyone higher than a T1 (my husband is a T2) is chemo and/or radiation. Has anyone done that??? Again, thank you so much, as we all know none of us ever want to be part of a club like this but when we are we feel so lucky and fortunate to hold membership to such elite people. xox