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Old 09-23-2008, 09:20 AM   #21
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Whitestick, very story about the news. My prayers are with you and your family.
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Old 09-23-2008, 09:33 AM   #22
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Whitestick tie that knot and hang on! Thanks for letting us know of your family crisis so that we can all direct our caring your way. God speed.
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Old 09-23-2008, 10:07 AM   #23
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I am so sorry to hear this news. M. D. Anderson would be where I would be heading ASAP.
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Old 09-23-2008, 10:18 AM   #24
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Take Care. It looks like you have received a lot of good suggestions here.
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Old 09-23-2008, 10:29 AM   #25
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I'm sorry to hear your news. However, keep in mind that someone always beats the odds and there is no reason to not believe it will be your wife.

Keep us updated as to her progress.
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Old 09-23-2008, 10:34 AM   #26
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Do your best to keep your head up, Whitestick.

You have a lot of folks here pulling for you and the fam, with good thoughts and prayers. Add mine to that list.
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Old 09-23-2008, 10:45 AM   #27
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You've taken the first steps at helping both of you by expressing yourself to get the support you need; I sometimes think these things are harder on men. Keep on posting, people care about you here.
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Old 09-23-2008, 10:56 AM   #28
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yes, at times life sucks. be real. don't hide the tears.
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Old 09-23-2008, 07:47 PM   #29
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I am so very sorry also and will keep both of you in my prayers also. I agree that you will need to be her advocate and her protector. She will need to rely on you for strength and love. Good luck with everything.
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Old 09-23-2008, 08:18 PM   #30
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My prayers for you and yours.....cancer is a hard road be it for the person with it or the family. We have been there. Keep the faith and my family wishes you the best.
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Old 09-24-2008, 02:45 AM   #31
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Thanks for all the expressions of support. I have looked intently at the MD Anderson stuff, but unless it is hidden very well, they don't have specific support for this type of cancer - peritoneal mesothelioma in the abdomen. It is apparently extremely rare, with only a few hundred cases a year. DW is taking it better then I am right now. I told her that I will need a few days to process and get over the shock, and hopefully she can hang on and wait for me, as she is very strong. I just want to cry/kill someone/break things. After 40 years, it's not supposed to be like this, the man is supposed to die, leaving the widow to enjoy the financial remains. I know that is extremely selfish, and I feel bad about it, but I still am going through the grief process. I'm getting better, and thanks for all your expressions of support. It's amazing, that she almost can't get any rest during the day, for all the phone calls from her friends and support folks calling to express support and help. I knew that she was loved and very special, and the support calls are affirming that. I'm sure that I wouldn't get that kind of response, and that's okay, I bask in her shadow. As the song goes, she is the wind beneath my wings.
Anyway, I'm still trying to find the treatment doctor/hospital for her, and even though I'm in Texas, I may have to travel to several other states to find one. It appears there is an expert in New Mexico and another in Idaho. And of course the Mayo clinic for a hospital. Is it better to pick the hospital or the doctor?
Thanks for your support.
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Old 09-24-2008, 07:01 AM   #32
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Whitestick, I truly can only imagine what you are going through. My heart aches for you. I know nothing about mesothelioma, but I did just do some research for you to try and help. I can't imagine trying to research things in your current state of mind - I would be so overwhelmed.

According to these videos, it sounds like the doctor is most important:

The Importance of Seeing a Mesothelioma Specialist | Mesothelioma Video Library

How Do I Find a Mesothelioma Specialist? | Mesothelioma Video Library

Mary Jane Seeks Out Peritoneal Mesothelioma Specialist| Mesothelioma Video Library

And this appears to be someone you can contact for a specialist referral:
Mesothelioma Medical Specialists - Cure Meso

Like I said, I have no background at all in cancer, but I wanted to try and help. I believe the sites above are reputable - especially the MARF one - it is a nonprofit org.

SG
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Old 09-24-2008, 07:20 AM   #33
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i am very sorry to hear about that news...a thunderbolt in your lives. i wish you both strength and courage in the times ahead.
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Old 09-24-2008, 08:27 AM   #34
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Whitestick, I work as a physician in a large cancer center. I know that everyone is different and we each process such shocking news however we must. I have no specific advice to offer but have learned a few general things over the decades.

Don't even attempt to suppress your emotions. Cry, laugh, or lock down as you must, just go with whatever you are experiencing and give yourself permission to experience the sometimes surprising range of reactions you'll probably be flooded with. It's OK, no reaction is wrong, bad, or foolish. Time will mute them all.

Second, there is a huge tendency in the US to seek out "the best place" or "the best doctor" at all costs. While finding expertise is crucial (especially in fairly rare diseases), in most cases the outcomes (good or bad) don't vary that much. In my view, if you are anywhere near a major city, it is wise to start with and stay with a local and reputable doctor. There are thousands of us. Use that doctor for initial staging, to establish care, and to help identify options. Form a relationship.

Then, use the high profile centers for a second opinion and keep your local oncologist in the loop. Everything is better that way, compared to spending months of her remaining precious time traipsing back and forth all over the country sometimes to no avail. Being close to home is worth a lot, especially in these circumstances.

Finally, the higher profile centers tend to offer treatment which may be fairly aggressive with small hope of response. The point at which one recognizes futility is crucial. A decision to refocus on comfort and dignity is difficult because it's too easy to mistake it for "giving up." In reality, the right choice might mean months of good quality life at home surrounded by loved ones , rather than prolonging life by months at the cost of having many of those precious remaining months undergoing the sequelae of chemo or major surgery. Discuss this carefully and clearly however often you need to, both with your DW and local oncologist. The "every possible treatment at any cost" mentality is sometimes unwise and patients feel pressure to go along. Again, no right or wrong answers, just food for thought.

If I can help with general information at any time, feel free to post here or PM me. You understand that I cannot offer specific advice, just share an experienced perspective.
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Old 09-24-2008, 08:28 AM   #35
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Whitestick, your family is certainly in our prayers!
You can get through this!
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Old 09-24-2008, 10:14 AM   #36
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So sorry to hear your news whitestick! It sounds like you care about her very much...in your grief and shock, find a moment to let her know how much you care about her (as i'm sure you have already) and help each other through these tough emotions.

Very best to you...
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Old 09-24-2008, 10:56 AM   #37
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So sorry to hear your news, and wishing the best for you. Miracles do happen, as well as sometimes just more favorable than expected outcomes. Wishing you good cheer and strength.

In my experience with ailing parents (different diseases) and medical interventions and hospital stays, there is great room for errors in treatments. Your W will need an advocate in the system and someone to double check orders, doses, correct medications and substitutions, failures to respond to calls or failures to check in when promised. Not to be gloomy about medical care, they can and do do amazing things, but many hospitals are understaffed and set up to deflect responsibility. Your W will need someone (you, probably) to work the system and keep everyone involved (and it will be lots of people) focused and avoid mistakes. My siblings and I have seen some horrific near-misses, and by being there have helped insure very positive outcomes for my parents through several illnesses. You can be a strong positive force.
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Old 09-24-2008, 03:07 PM   #38
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I can understand your frustration, anger & grief, all such strong emotions coming on simultaneously can make you(or anyone) fatigued & leave you confused.
The serenity prayer has often helped me in such grave situations. Try to recite it every chance you get in a day, it will focus your thoughts in the right direction.
I second Rich in Tampa's suggestion, keep a local Oncologist & use his guidance to get to a major health center. I am a physician although in a different specialty, consider her comfort first in pursuing any experimental chemo regimens.
Someone above us has the final switch on each one of us, I see that every day. No one is going to get out of this life alive.
We pray for your wife, yourself & the family.
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Old 09-24-2008, 07:19 PM   #39
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Our prayers are with you.

My niece had a rare cancer as a child. She had about a 30% chance of making it. EVERYONE she knew from the hospital who had what she had and took the experimental treatments she did did not make it. She did. She's a beautiful 20 something now, and we're grateful. I pray that your wife makes it too. People can and do live through rare cancers.
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Old 09-25-2008, 12:01 PM   #40
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Quote:
Originally Posted by whitestick View Post
Thanks for all the expressions of support. I have looked intently at the MD Anderson stuff, but unless it is hidden very well, they don't have specific support for this type of cancer - peritoneal mesothelioma in the abdomen. It is apparently extremely rare, with only a few hundred cases a year. DW is taking it better then I am right now. I told her that I will need a few days to process and get over the shock, and hopefully she can hang on and wait for me, as she is very strong. I just want to cry/kill someone/break things. After 40 years, it's not supposed to be like this, the man is supposed to die, leaving the widow to enjoy the financial remains. I know that is extremely selfish, and I feel bad about it, but I still am going through the grief process. I'm getting better, and thanks for all your expressions of support. It's amazing, that she almost can't get any rest during the day, for all the phone calls from her friends and support folks calling to express support and help. I knew that she was loved and very special, and the support calls are affirming that. I'm sure that I wouldn't get that kind of response, and that's okay, I bask in her shadow. As the song goes, she is the wind beneath my wings.
Anyway, I'm still trying to find the treatment doctor/hospital for her, and even though I'm in Texas, I may have to travel to several other states to find one. It appears there is an expert in New Mexico and another in Idaho. And of course the Mayo clinic for a hospital. Is it better to pick the hospital or the doctor?
Thanks for your support.
I am sure life is confusing and chaotic and maddening. I still think that you need the BEST folks in the world to get the RIGHT info about what to do. The Mayo Clinic is THE PLACE for that. If Rich In Tampa, Moemg or anyone disagrees, that is fine. I have personal experience there, and while I was waiting, I heard 2 princesses and a prince get called up. If the leaders of other countries bring their leaders there, it must be pretty good..........

My dad is a retired pharmacist that hates doctors. However, I clearly remember his words to me as a young man:

"If something bad ever happens to your health, and you don't know what to do, hightail it to the Mayo Clinic. You WILL GET the straight scoop there"............
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