Your love and kindness help sustain us

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Dear Friends,
Thank you very, very much for your kind responses. I can't tell you how much it means to me to know you are out there, know what we are going through and you care about us. Thank you.

**** does have a small hernia but he does have fluid too. Can someone please tell me what they do to get rid of the fluid? Do they drain ascites? Do they do chemo first? I know we will have these questions answered soon but I was just wondering what you have all experienced.

An update on how we are doing. We are have moments of shock and just being so very sad. However, we decided to make a wonderful day. We took our younger daughter out on our boat and we enjoyed a ride from Ala Moana Harbor to Diamond Head to Hawaii Kai about 10 miles along the coast. It was beautiful! I tried to just stay grateful and not be sad. I think we had a great time. We anchored off Waikiki and **** took our stand-up board into the surf line up and caught a great wave. I was so proud of him as I saw him enjoying the wave. We also saw 6 beautiful sea turtles. Tonight we went out on a date - dinner and a movie. I just want to be with him and hold his hand. That's where we are at. I love my life and my husband. I want lots of time with him.

Thank you for everything.

Aloha,
Kathleen
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Comments

  • Sonia32
    Sonia32 Member Posts: 1,071
    Kathleen
    I pray you and **** have many more years, and he gets to see his girls grow up and be a grandad. I'm so saddened by what's happened to your ****, this cancer is so unpredictable. I am quite sure your **** during his last treatments tried to stay healthy, you said he would walk the dogs in the past or surf. I've come to the conclusion, cancer is like a time bomb and you can try and keep it at bay, for some it never comes back again, but if it's going to explode it will. But it doesn't mean you should stop and wait for it, I've learnt from this board you have to carry on, no matter how you do it, even if it's taking each day as it comes, like I do for myself.
    You are both so lucky to have each other, you are a warm and loving person, a wife and mother. As I said before I know **** will fight this, he has everything to fight for with a loving wife and daughters on his side.

    Love and hugs
    Sonia
  • geotina
    geotina Member Posts: 2,111
    Kathleen:
    With this crazy disease you never know what is around the corner so you are doing the right thing, let things settle in, then go out and enjoy the things you like to do, even if it is just sitting on the beach saying nothing. When I see George doing things he likes it really seems to make a difference, a difference I can see in him. Hope this make sense. When he just sits around thinking too much, he looks drawn, pale, etc. but when he gets out a bit, he really perks up. We had dinner with friends last night, just pizza and salad, but I saw George laughing and talking and really looking pretty good given our bad news a few weeks ago. Lucky we have friends that don't spend an hour looking all gloomy and talking about nothing but cancer.

    As far as ascites yes they can be drained. Catherine (C Dixon) has been having this done for the past several weeks, perhaps she can shed some light on experience and what the process is.

    You two are back in the fight and I know first hand it is a very bitter pill to swallow for both of you but give it a few days and you will get past it and be on to a new game plan.

    Love to you both - Tina
  • Patteee
    Patteee Member Posts: 945
    Oh Kathleen, thank you for
    Oh Kathleen, thank you for having an incredible day! Kudos to both of you for seizing the moment and riding the wave!

    The hernia and ascites. I actually had hernia repair at the colostomy site and developed a pocket of fluid, a syringe full, AFTER the surgery! It didn't hurt to have it taken out- it was done by an intervention radiologist, he used an ultasound to guide the needle. I actuallly felt better after the procedure.
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Heartbreaking!
    I'm so very sorry to hear of ****'s progression. It's just heartbreaking.

    Kathleen, they'll need to find out if the ascites is malignant or not. Do a websearch for 'prognosis after ascites'. That will explain more.

    Praying for you today!
    Diane
  • plh4gail
    plh4gail Member Posts: 1,238
    Boat rides and dates
    Kathleen, it was so great to read your post. I has to be so hard on one hand, but to read that after you got the news the other day and took some time to be shocked, sad, angry, whatever and all you went through, and now you are picking yourselves up and finding the enjoyment in places that make you all happy. Thank you for sharing the day you shared. I hope you take tons of pictures :)

    Gail
  • idlehunters
    idlehunters Member Posts: 1,787
    plh4gail said:

    Boat rides and dates
    Kathleen, it was so great to read your post. I has to be so hard on one hand, but to read that after you got the news the other day and took some time to be shocked, sad, angry, whatever and all you went through, and now you are picking yourselves up and finding the enjoyment in places that make you all happy. Thank you for sharing the day you shared. I hope you take tons of pictures :)

    Gail

    Best to you both!!
    I continue to send you good vibes and prayers...... Hang Loose! You take care

    Jennie
  • coolvdub
    coolvdub Member Posts: 408

    Best to you both!!
    I continue to send you good vibes and prayers...... Hang Loose! You take care

    Jennie

    great attitude ;)
    Kathleen,

    I'm so sorry fo the set back that you and **** are experiencing. But I have to say, I love the positive attitude you have. You both have been in this fight for a long time and done well. My hope is this is just a set back of short duration. I wil be praying for you all. I too hope you both get to see the kids grow and become loving and caring grandparents.

    Don
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    Hi Kathleen
    I'm sorry to hear the bad news. I'm new to your group of wonderful people. Great support. Keep your frame of mind its very positive. Enjoy life and family. Hope and pray for the best for your husband and family....God Bless!
  • mommyof2kds
    mommyof2kds Member Posts: 519

    Hi Kathleen
    I'm sorry to hear the bad news. I'm new to your group of wonderful people. Great support. Keep your frame of mind its very positive. Enjoy life and family. Hope and pray for the best for your husband and family....God Bless!

    I have followed your story
    I have followed your story for awhile and I wish I was closer to give you a big hug..You guys will get through this again. When the times comes to start the fight, you all will be ready. I can only imagine how it feels to be knocked back down and feel like it is all starting over. We all care about you guys.. You will have many beautiful years together. God Bless
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Courage
    You both have displayed such courage going through all you have been through. So glad that you were able to go on a date and have fun. The boat ride sounds wonderful. You should do it more often if you can. Good luck in the journey ahead.

    Kim
  • C Dixon
    C Dixon Member Posts: 201
    Ascites
    Do not do the research on prognosis on ascites!!

    There are many reasons for them. Mary had them in 2006 and she is still here.

    Yes, I have them and they are less than preferable because they make u feel bad. He needs to see doc to confirm. I have two hernias that were relatively small but the fluid has made them large. Ugh. I have gotten them drained about nine times. Something in my pritoneum is causing them. They started slowing down but then I had an allergic reaction to oxi.

    The drains are very safe. They do not hurt at all. Just a shot of lidocane. They will test the fluid for malignancy. Mine was negative but the surgeon at Duke said he didn't put much stuck in that. I thought, great.

    Any way, next week I am going to get what they call a pleurex catheter, which will allow me to drain at home. Then I start Xeliri. Duke want three months on chemo with stability and preferably suppression to operate. They would take the pleurex out at that.

    Well, that's my story.

    Catherine
  • sasjourney
    sasjourney Member Posts: 395
    Kathleen and ****
    I can feel your pain and relate to it so well. I am going through the same feelings right now and trying to deal with all these same emotions. Since **** and I will probably be going on the same chemo we will support each other and get through this. Please let me know when you will be back in Orange County..I would love to hug you both in person. You and your family are in my prayers. We WILL get through this and survive. We have too much to live for. I am glad you enjoyed your beautiful day with your family. There will be many more of those.

    Hugs,

    Sara
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    C Dixon said:

    Ascites
    Do not do the research on prognosis on ascites!!

    There are many reasons for them. Mary had them in 2006 and she is still here.

    Yes, I have them and they are less than preferable because they make u feel bad. He needs to see doc to confirm. I have two hernias that were relatively small but the fluid has made them large. Ugh. I have gotten them drained about nine times. Something in my pritoneum is causing them. They started slowing down but then I had an allergic reaction to oxi.

    The drains are very safe. They do not hurt at all. Just a shot of lidocane. They will test the fluid for malignancy. Mine was negative but the surgeon at Duke said he didn't put much stuck in that. I thought, great.

    Any way, next week I am going to get what they call a pleurex catheter, which will allow me to drain at home. Then I start Xeliri. Duke want three months on chemo with stability and preferably suppression to operate. They would take the pleurex out at that.

    Well, that's my story.

    Catherine

    You have to turn it off.....immediately.......
    Kathleen and ****,
    You have both found the ability to turn sad news into something that you can completely erase until coping skills for it come....Your boat and board and ocean......I find that when the chips for me are down all I have to do is go out in the garage and be around my boat. I don't have to be fishing, just be around my boat. Sure, my family is also a joy to me but when things aren't going good for me, if I am around my family then I start to think of what could possibly happen to them if something happens to me...so I remove myself from sad situations until my mindset is back to rational mode. Defense mode for me is a calm, serene feeling that comes over me when I know that no matter what, all will be well. I know that if something was to happen to me that most likely my wife will re marry, as she should just being 37, I can understand if she did, and I have told her that as much love as I have for her that the kids need a father figure, and if not the right one then not to worry, I would haunt him until he left..LOL... Jealousy, for me left a long time ago so I know whatever is placed in our path we will deal with it in the best way possible. I hope to live for 120 years, but if I don't and only live to 57 at least I have done everything in my power to make my house a place of warmth for all of us, and only good memories emanate from inside here. As Stage 4 it slaps me in the face sometimes that yeah, the disease has progressed in me, but it will never make a different man out of me. I won't fret or worry about things I have no control over any longer, yet, I am very determined as I know you are to know that this only means for the both of us that we could be on permanent maintenance chemo indefinitely....Well, great if that what it takes, you and I can work around those slight obstacles. Indefinitely only means until they find something that gets us back to where we get our lives back as they were. We will not die, neither of us, we will simply go into survival mode and if we have to do more chemo then we do it, if we have to have more surgery then we have it, if life becomes of a different nature because of it then we change our style........Kathleen and ****, what you think of in this new news is the worse, human nature, but its also human nature for the survival mode to kick in...so its not the end, its simply how we will be when this round is over. All will be ok, it will simply be "A New Normal"...that's it...Now lower your heads and plow through and we will see the both of you on the other end.........Love to all of you......Buzz ( with a z )
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    turtles and waves and the sea
    how great and i am shore the date was fun.
    all we can do is fill our lives with beauty and love.
    and anyway who know what tomorrow brings, just keep your faith , hope and love strong!
    my continued prayers for your healing.
    hugs pete
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    I wish we had a "like" button
    Hi Everyone,
    As you can see I am coming here a lot because you are so warm and supportive. I wish we had a "like" button under the posts. As I read your words of love and wisdom I get stronger. Thank you.

    Church was good today and now we are watching the Patriots. **** is from Boston and we are hoping to see the Pats in the Super Bowl. :)

    I am working hard at keeping our home a place of rest and quite love.

    Thank you for your prayers. We feel them.

    Aloha,
    Kathleen
  • msccolon
    msccolon Member Posts: 1,917
    ascites
    As Catherine said, I had ascites from a tumor on my right ovary back in 2006. I had to have it drained every week, roughly 4L each time. The ascites stopped once we removed the tumor. Better to find out what's causing the ascites rather than just address the ascites itself. I never researched anything on ascites, and it sounds like it wouldn't be a good idea if I had! Keep strong, you guys have a lot of people praying for you!
    mary
  • C Dixon
    C Dixon Member Posts: 201

    I wish we had a "like" button
    Hi Everyone,
    As you can see I am coming here a lot because you are so warm and supportive. I wish we had a "like" button under the posts. As I read your words of love and wisdom I get stronger. Thank you.

    Church was good today and now we are watching the Patriots. **** is from Boston and we are hoping to see the Pats in the Super Bowl. :)

    I am working hard at keeping our home a place of rest and quite love.

    Thank you for your prayers. We feel them.

    Aloha,
    Kathleen

    Kathleen
    Don't work hard to do that. Rest in Him. He knows. He has plans for good and not evil.

    Catherine
  • pepebcn
    pepebcn Member Posts: 6,331
    msccolon said:

    ascites
    As Catherine said, I had ascites from a tumor on my right ovary back in 2006. I had to have it drained every week, roughly 4L each time. The ascites stopped once we removed the tumor. Better to find out what's causing the ascites rather than just address the ascites itself. I never researched anything on ascites, and it sounds like it wouldn't be a good idea if I had! Keep strong, you guys have a lot of people praying for you!
    mary

    Kathleen im happy to see you positive and with this attitude
    that's the best way to help Him to fight and win!.
    Hugs to both!
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Vancouver to Hawaii!
    Kathleen and ****,

    I read the posts in this thread and thought "Whaaaaa??" I haven't been around for awhile (busy, busy, busy) so I knew I had missed some very important news. I got out of this thread and went checking and found the thread about the results from the CAT scan.

    Ok... first... a huge hug to both of you. What a shock to go in for a CAT scan, expecting nothing exciting on the scan and getting the A-OK to fly... only to be told all this garbly-****. Right now, I firmly believe that the shock you are experiencing is because you really were expecting a totally clean scan, only to be told of all this kaka showing up.

    I'm glad you managed to have a lovely boat ride! Darn... this month is the month that I would be in Waikiki every year (for 32 years) except I haven't been in the last two years because I can't fly (nerve damage in the legs and I don't want to risk blood clots, not to mention, I can't walk far at all... and Waikiki is all about walking) :) But if I HAD been there this year... I would have loved to come on that boat ride with you, **** and the girls!

    So, now that you are back at home and still in a bit of shock about Friday's news, I want you both to take a DEEEEEEP breath. Try and erase from your mind that you were expecting a clean scan... that's what hurts, you were expecting that and didn't get it. Now... a bunch of small nodes in the lungs... such a bummer. When there are multiple ones, it's not as if they can just go in and cut out both lungs... but it doesn't mean the end is anywhere close to here!! In March 2008 that's when my diagnosis was changed from a Stage III to a Stage IV because I had "multiple" nodes in both my lungs (I believe I had 12... they zapped one with an RFA procedure so I still have the 11). I freaked, of course. Having multiple anything bad does not sound good... but my GP reassured me that treatments will be given to keep those nodes under control. I wasn't convinced. But then he told me of another patient of his... a tall, large fellow, who had so many colon mets in his lungs, they couldn't count them all... and he had had them for over 4 years and still was going strong. So, no one wants mets, of course, but it's not the end.

    Now, I'm no doctor, but my guess is they will put him on chemo and the plan will be that the chemo will shrink the nodules, both in the lungs and the mass... although, the 5cm mass is an enigma. Did it not show up on previous scans? Whereabouts near the aeorta is it? Is it operable? If it is, I still think they'll want to try the chemo and see how much it shrinks from the chemo before doing anything else to it.

    But... whatever you two do... do NOT despair! For starters... **** is young and healthy. Heck, the fact he can go running into the water with his board and catch waves... trust me, he is healthy . Even before I knew I had cancer... my time spent in Hawaii was walking from my hotel or condo to the beach in the morning... and then laying out in the sun or under an umbrella all day with friends. Not exactly what I'd call a lot of outdoor exercise .

    I'll start another thread with my upcoming adventure... but tell **** I say to hang in there! We can attack this together... and neither one of us is going to be going anywhere soon... **** has waves to catch and I have theatre productions to see get up on the boards and one of these years, I WILL make it back to Waikiki and I will expect BOTH of you to be there for when I get there. We will be doing dinner!! :D

    Huggggggs,

    Cheryl
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member

    Vancouver to Hawaii!
    Kathleen and ****,

    I read the posts in this thread and thought "Whaaaaa??" I haven't been around for awhile (busy, busy, busy) so I knew I had missed some very important news. I got out of this thread and went checking and found the thread about the results from the CAT scan.

    Ok... first... a huge hug to both of you. What a shock to go in for a CAT scan, expecting nothing exciting on the scan and getting the A-OK to fly... only to be told all this garbly-****. Right now, I firmly believe that the shock you are experiencing is because you really were expecting a totally clean scan, only to be told of all this kaka showing up.

    I'm glad you managed to have a lovely boat ride! Darn... this month is the month that I would be in Waikiki every year (for 32 years) except I haven't been in the last two years because I can't fly (nerve damage in the legs and I don't want to risk blood clots, not to mention, I can't walk far at all... and Waikiki is all about walking) :) But if I HAD been there this year... I would have loved to come on that boat ride with you, **** and the girls!

    So, now that you are back at home and still in a bit of shock about Friday's news, I want you both to take a DEEEEEEP breath. Try and erase from your mind that you were expecting a clean scan... that's what hurts, you were expecting that and didn't get it. Now... a bunch of small nodes in the lungs... such a bummer. When there are multiple ones, it's not as if they can just go in and cut out both lungs... but it doesn't mean the end is anywhere close to here!! In March 2008 that's when my diagnosis was changed from a Stage III to a Stage IV because I had "multiple" nodes in both my lungs (I believe I had 12... they zapped one with an RFA procedure so I still have the 11). I freaked, of course. Having multiple anything bad does not sound good... but my GP reassured me that treatments will be given to keep those nodes under control. I wasn't convinced. But then he told me of another patient of his... a tall, large fellow, who had so many colon mets in his lungs, they couldn't count them all... and he had had them for over 4 years and still was going strong. So, no one wants mets, of course, but it's not the end.

    Now, I'm no doctor, but my guess is they will put him on chemo and the plan will be that the chemo will shrink the nodules, both in the lungs and the mass... although, the 5cm mass is an enigma. Did it not show up on previous scans? Whereabouts near the aeorta is it? Is it operable? If it is, I still think they'll want to try the chemo and see how much it shrinks from the chemo before doing anything else to it.

    But... whatever you two do... do NOT despair! For starters... **** is young and healthy. Heck, the fact he can go running into the water with his board and catch waves... trust me, he is healthy . Even before I knew I had cancer... my time spent in Hawaii was walking from my hotel or condo to the beach in the morning... and then laying out in the sun or under an umbrella all day with friends. Not exactly what I'd call a lot of outdoor exercise .

    I'll start another thread with my upcoming adventure... but tell **** I say to hang in there! We can attack this together... and neither one of us is going to be going anywhere soon... **** has waves to catch and I have theatre productions to see get up on the boards and one of these years, I WILL make it back to Waikiki and I will expect BOTH of you to be there for when I get there. We will be doing dinner!! :D

    Huggggggs,

    Cheryl

    Cheryl
    Cheryl,
    Let's plan on that Hawaii date in the future! Yes, that will be good.
    Thank you for sharing about your situation with a number of nodes. That does give me hope that we can get these nasty things stable. That is what we need right now.

    In regard to the mass, that is one of the reasons Dr. Lenz wants a PET on Monday. He wants to know what that thing is.

    I'll keep you and everyone posted.

    Lots of warm love coming your way.

    Aloha,
    Kathleen