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Posts posted by JoniRobertWilson

  1. We are having Robert's funeral today. I think it will be beautiful. His boy scout troop is bringing in the flags - all of the boys parents allowed them to be a part of the service which really amazed me. All of those little boys who enjoyed nothing better than running around an pinching each other butts saying "chunkie chunkie" are going to pay their respects to a a gentle giant who was their leader. My sister made a beautiful DVD filled with pictures of Robert and his family, set to music entiteld "Who am I". The words are something like this - Who Am I, that the Lord of all the Earth, would care to know my name, would care to know my hurt? Who Am I that the bright and shinning star would choose to light my way...it is beautiful. A quartet of men are singing I Can Only Imagine. I don't know why I'm writing all this except that I so desperately want his funeral to be a beautiful expression of love from me to him. Do you think he'll konw, do you thynk he'll know that alex and I miss him so much, and that we're ready for him to come home to us now. Do you think he'll know that the phone hasn't stopped ringing and that the house has been filled with people missing him?

    I love him. Miss him.

  2. I have found it barbaric that I have been able to get out of bed, shower and "take care of business". How awful am I? I had to go plan my husbands funeral, buy a burial plot, visit with friends/coworkers/family. I just keep going. How ridiculous - shouldn't I be in bed getting to cry, getting to mourn Robert. I'm being comforted by a lot of people and those I need comfort from aren't giving me comfort. That's sucha long story that I can't even post it. I feel like I have to walk on egg shells with some people to salvage their feelings, you know the ones, the ones who think they were so important to Robert now that he is gone? The ones I'd like to say "go away" you remind me of the hurt your caused him? But I can't because my husband held his tongue while he was alive, I'll learn to hold mine for him. That isn't easy.

    I'm trying to plan the most beautiful funeral. The words won't be hard because he truly was wonderful. Why does cancer hit such good people? I don't understand, never will. My faith is still strong, I know Robert is with God but that doesn't mean I'm happy with God right now for taking him. I'm so afraid of what his death means. I keep wondering, did God take Robert first so he wouldn't have to bear the loss of Alex and he's getting ready to take my son too? That is haunting me. Is that normal? Most of you have been through this. Help. Is this right? Isn't it revolting that I sstill get to breathe and walk this earth and I wasn't 1/2 the person my husband was?

  3. My wonderful husband left this world at 8:42 tonight. I have to tell you that the past few days I had come accept that I might not be able to be with him when he died because of Alex, I felt like I needed to be home as well. I had left the facility to eat dinner with my sister. When I came back to the facility his mom and sister had left and his dad was going to leave for a few minutes to rest. I was back less than 10 minutes, alone in the room with my sister and he took his last breath. Although I was apprehensive about being with him it truly was a gift to know that he went peacefully and quietly. I couldn't hear the trumpets but I know they were sounding in Heaven.

    I am numb and bewildered. I am unsure of what comes next. A few days to plan a celebration for him, to give him a service fitting the great man he was.

    I thank you all for your support. Its been a fast furious time since his dx 3/17/04. Just 4 short months. It's been good having you to talk to.

  4. I'm so sorry that he is in such pain. That was hard for us to get under control but once we did it was great. Robert didn't get enough relief from the patch either. He finally went on oxycontin 80 mg every 8 hours plus he takes dilaudid every two hours/as needed for short term. If you haven't tried oxy - give it a try, it has made all the difference in the world.

    Bless your hearts.

  5. Robert's situation has taken a turn. We called in hospice today and they suggested we admit him to an inpatient treatment facility - it's a Hospice facility. A friend had her mother there a few years ago and said it was nice so we agreed. They took him by ambulance across town. The facility is wonderful and the nurses actually met us at the door. I was able to come home tonight to sleep with my son and be with him. Robert's wonderful sister is staying with him tonight. He is unable to keep his oxygen level above 90 without a lot of oxygen. He can't really stand or walk now, limited but not much to speak of. His legs are extemely swollen as well as his abdomen. It just really doesn't look good.

    Please focus your prayers on a peaceful period for Robert and for my son Alex. He is only 8 and doesn't deserve losing his dad.

    Thanks for your prayers.

    I will update you more later.

  6. This is only our experience, your situation is probably different. During radiation Robert had some unexplained pain that the doctors just kinda looked at him like he was crazy. He ended up having more cancer than what the doc originally thought which was causing his pain.

    I hope your pain ends up to be nothing but I say have the docs check it out. Pain is telling you something

  7. Just wanted to tell you all that today is Robert's birthday! Yeah!

    He wanted to go out to dinner to celebrate but instead we're having friends and family here to wish him happy birthday!

    I want you to know that without this website I'd have lost my sanity months ago. It's like I have a bunch of kind, courageous people, who know what I'm going through, who are filled with advice and encouragement and they are all packed into our office and all I have to do is open the door and there you all are waiting with open arms and hearts. Thank you for holding my hand through this awful time, you are all so courageous!

  8. What a lousy day....

    Robert is in the hospital and we're gearing up for him to come home today. Last night was one of only a handful of nights I have been alone here in my own home. I was so tired, I took a sleeping pill and headed off to bed. Slept through a wonderful Kansas storm and woke up to find a nicely flooded basement. Home alone. Great. Husband who knows everything and can fix everything isn't here. I started calling companies that clean up this kind of mess and rec'd a bid of about $1,000! Nice I think, especially now. Why? Well, my dad and I ripped up the carpet, I called a friend to help pick out carpet samples (it's a well known family secret - I can't tell tan from pink!) and called brother in-law and husbands of friends who all came over and go the carpet/pad ripped up and taken away and we cleaned the floors really well. We were lucky, the tile underneath wasn't so bad and I think we can deal witih that so we're back on schedule to have Robert home!

    Since Robert has been sick, it's been one disaster after another...first, I shut the garage door on my explorer - that was pretty, then our bathtub clogged up - this was the day my son was home puking with strep throat. Called RotoRooter who promptly drilled through the pipe and caused the water to drain into the basement. They had to cut a hole in the ceiling - we lived with that for several months - my sister/ herhusband/nephew fixed that while in Houston - also our sprinkling system blew a hole or something and we had Ol' Faithful in our front yard. Is any of that a big deal? No, I know that but it's just one more thing on top of the biggest thing I've ever dealt with and I'm so tired I can't een describe it.

    Tonight our plan is to light off fireworks and eat fried chicken. I hope all goes well tonight and I hope you and your families have enjoyed a nice, floodless holiday!



  9. Hi,

    My husband just started on Iressa but there hasn't been any mention of Celebrex - I've only seen that on commercials. I hope he does good on Iressa - they tell us it takes several weeks to get to it's full strength but I think that is probably conservative. We were thrilled the first day!!!

    Good luck to you and your husband and we're glad you found this site.

    It has been a saving Grace for me!

  10. Hello friends,

    We returned from Houston (MD Anderson) last night. It was so good to be home and see our son! The week was exhausting.

    We met with an oncologist who said to continue on Iressa. We needed to see if it would work before trying anything else. If Iressa doesn't seem to be working, we'll go back there and get something else. If Iressa works we will just stay put here.

    In regards to the chest tube (he's had it 4 weeks) the oncologist sent us to a pulmonary doc because he said the chest tube area was infected and there also appeared to be an infections on his right side lower. The skin was red and warm to the touch. They pulled his chest tube and put him on antibiotics. We're still apprehensive though about them pulling the chest tube because he was still draining 400 ml per day! They say it has to be down to 30 per day - we're way off from that. Anyway, we're suppose to watch, wait and see. If fluid builds up we're suppose to get in a Denver Catheder. Robert wants to go back to Houston and have it done. Id rather have it done here but he's the boss on this and gets to do whatever he feels is best and is comfortable with.

    I'm not sure what I feel like we accomplished in Houston honestly. They never checked the pathology slides that we brought them. I thought they would do that and we'd see (make sure) that the results were correct, I mean isn't that the point of a second opinion. NO one else seems to think that is a big deal. Hello....why would they request them if they weren't going to give us the results? I'm seriously considering having them sent to an independant lab and read.

    I missed "talking" to you all. I was able to log in while in Houston but I couldn't remember my pass word. I was able to read but not respond.

    Take care!

  11. I am so sorry for your loss. I know it may seem unbearable now but I hope with time your sadness will decrease and the wonderful memories flood in and stay in your heart forever.

    Thank you for your encouraging words for the rest of us in your time of sorrow.

    God Bless

  12. I have to put my two cents in on this subject...First, we have to let each other say what we want without fear of being laughed at or fussed at.

    I know when I read what each of you say, sometimes I agree, sometimes I don't but I'm so glad we have each other to vent to. I was laying in bed the other night wanting so desperately to "purge" all my feelings of hopelessness and doubt but I can't say it to my husband and I can't say it to anyone else because I don't want to bring anyone else down. Anyway, I had promised my son I would sleep with him for the night and we sat up talking until that wonderful Ambien kicked in and so I slept off my need to purge and you were all spared all the horrible things were running through my mind.

    As far as blaming God, I don't know, I can see why people ask "WHY ME?" and I can honestly say I don't understand "WHY US?" but my feelings have been of gratitute to God for first providing Robert to me, giving Alex to us. I have been blessed with the two of them. We have been lucky enough to have good insurance and Robert has short-term disability which keeps us moving along financially. Grasping on to my faith with both fists clenched tightly gets me out of bed. Somedays I only make it to my knees but I'm up.

    I thank each of you for sharing your feelings and your stories. Some make me laugh others make me cry but knowing you are all out there, waiting to help, waiting to give also gives me reason to get up.

  13. I certainly agree with the post about you getting a break from it all. Surely there is someone who could come in and watch her either overnight or during th day. Being the caregiver is horrible. I know it's hard to leave them when you know you're the best person to be there for her but you won't be the best if you don't/won't take a breather.

    It doesn't mean you don't love her.

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