Sometime life just sucks!

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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
Whitestick, your family is certainly in our prayers!
You can get through this!
 
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...
 
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.
 
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.
 
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.
 
whitestick said:
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.
Click to expand...

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"............
 
Whitestick,

I'm saddened by your news of your wife's cancer and both of you will be in my prayers. I second the recommendation of going to MD Anderson for treatment of her rare form of cancer.

In early 2007 I was diagnosed with a cancer that has a dismal survival rate. After surgery, radiation and chemo treatment I am cancer free so miracles do happen. Please don't try to carry this burden just my yourself. Your faith, friends and family are there to offer support for you both.

2soon2tell
 
2soon, I have been wondering about you. Glad to know that treatment went well.
 
Whitestick:

It's not the end of the world. My DW just finished with her DES Daugthers cancer (Clear cell carcinoma) treatment a few weeks ago. I know how you feel. We work hard to take care of ourselves all our life and were looking for a decently happy ER until the bad news a few months ago.

Be there for her. That's all I can say.

I wish you and DW the very best....
 
Thanks for everyones expressions of hope. The frustrating part is in trying to obtain understandable and believable information from those who are supposed to help. Won't go into it now, but having worked in engineering disciplines most of my life, it seems there is little hard evidence or facts that can be dealt with in this arena.
I did manage to put a smile on DWs lips today even though some might consider it gallows humor - it seems that her form of cancer is so rare that a couple of clinical trial researchers have become overly enthusiastic to get her into their trials (ostensibly because there are not enough with her condition to try these experiments on). I suggested to wifey that we should put a listing in Craiglist seeking best offer for her services as a subject for their trials.
Given the moroseness of the past week, it seemed to be just enough to make her smile - and that was worth it. She even wanted to go to the gym tonight after that.
Again thanks for your prayers and well wishes.
 
I just noticed this thread, whitestick. You and your wife are in my thoughts and I'm sending positive wishes your way.
Just two weeks ago I went wild blueberry picking with my friend who was diagnosed with stage 4 breast cancer two years ago that had advanced pretty much all over, especially her lungs. She has managed to battle it into remission. She was not expected to live, much less go hiking in the mountains and pick berries all day! And drive us to the trailhead over rough road, besides!
I wanted you to know that the experience has not been entirely negative for her. She has learned to not put things off, and has learned to enjoy each day to the fullest and not take things for granted.
Each day is a gift. Even the hard days.
Take care.
 
I wish I were wise enough to be able to say something that would make you at least feel okay about the situation, but really, there's nothing that could make it okay, is it? I will pray for you and your wife. It's very fortunate that you each have someone that you've been able to rely on for all these years - that's a wonderful thing.
Big hug for you both!
Michelle
 
whitestick said:
...I did manage to put a smile on DWs lips today even though some might consider it gallows humor - it seems that her form of cancer is so rare that a couple of clinical trial researchers have become overly enthusiastic to get her into their trials (ostensibly because there are not enough with her condition to try these experiments on). I suggested to wifey that we should put a listing in Craiglist seeking best offer for her services as a subject for their trials.
Given the moroseness of the past week, it seemed to be just enough to make her smile - and that was worth it. She even wanted to go to the gym tonight after that.
Click to expand...
i see someone making lemonade out of lemons. i admire both of your spirits!
 
We received some great news today, although we still have to wait for some confirming pathology reports, but her latest PET scan shows no visible cancer. Doc is not sure if this means it is all microscopic and will have to wait for it to get bigger to show up, or if by the grace of GOD, the first surgeon got it all when he was in there mucking about. He wasn't even aware of it being cancerous, was looking for something else. It appears this all means that we caught it early. According to the Doc, the normal stats are based on a much later diagnosis, and more symptoms occurring, which generates the short survival times often quoted. I know this disease is a series of highs and lows, but for now, we'll take this high, for however long it might be. We are still aggressively pursuing the specialists to see what they think, but at least DW can get a nights sleep without waking up thinking about it, or at least I hope so.
Thanks for all your well wishes and prayers, I'm sure that was at least partially the source of this good news.
You are all invited to have a drink with me tonight, if only virtually at this point, since she still is not supposed to drink yet.
Thanks and maybe Life doesn't suck so much.
 
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