Trial and tribulations
Crow71
Member Posts: 679 Member
Hey Folks
Martin Luther King Jr. said "Faith is taking the first step even when you don't see the whole staircase." I read this somewhere today but I can't remember where. I wonder what it is when you take the first step and refuse to believe in the staircase that you see.
I started the trial at Duke on Monday. The trial is a 21 day cycle. Days 1 through 5 are dose days. Days 8 and 15 are lab and Dr. visit days. After 2 cycles I have another scan.
This week has been long. On Monday I had to stay all day and night for constant blood draws, ekg's etc. I woke up from an afternoon nap in excruciating pain. Then I barfed a few times. All night the nurses wouldn't give me enough dilaudid. At about 3 am I just sat down on the floor outside the nurses station. By Thursday the doctors came to the conclusion that I had a kidney stone. It's gone now. It might have been from the study drug, but it was more likely due to hydration issues that come with having an ileostomy; or maybe the large doses of vitamin c. I was so happy to have a kidney stone. The fear was that the pain was from a tumor pushing and blocking the urethra. I'm not sure how we would have solved that problem.
Stayed at the hotel Tuesday night. Went home Wednesday afternoon. Back at Duke from 9-12 on Thursday. Slept all afternoon and night. Started this morning at 7:30. I've had a blood draw every hour or 2 hours. The last one is soon and then we can go home!
Kim and I are hopeful that this drug can do me some good. I hated to give up on the supplement regimen, but the tumors are so aggressive that I felt I wasn't going to get any benefit from them. At this point I have to focus on eating as much as I can. Half as much food fills me up these days. A glass of water and a handful of pills fills me up. So I've rolled the dice and I'm hoping for the best. In the meantime I'm focussing hard on holding on to faith and gratitude.
I hope that everyone is well.
Roger
Martin Luther King Jr. said "Faith is taking the first step even when you don't see the whole staircase." I read this somewhere today but I can't remember where. I wonder what it is when you take the first step and refuse to believe in the staircase that you see.
I started the trial at Duke on Monday. The trial is a 21 day cycle. Days 1 through 5 are dose days. Days 8 and 15 are lab and Dr. visit days. After 2 cycles I have another scan.
This week has been long. On Monday I had to stay all day and night for constant blood draws, ekg's etc. I woke up from an afternoon nap in excruciating pain. Then I barfed a few times. All night the nurses wouldn't give me enough dilaudid. At about 3 am I just sat down on the floor outside the nurses station. By Thursday the doctors came to the conclusion that I had a kidney stone. It's gone now. It might have been from the study drug, but it was more likely due to hydration issues that come with having an ileostomy; or maybe the large doses of vitamin c. I was so happy to have a kidney stone. The fear was that the pain was from a tumor pushing and blocking the urethra. I'm not sure how we would have solved that problem.
Stayed at the hotel Tuesday night. Went home Wednesday afternoon. Back at Duke from 9-12 on Thursday. Slept all afternoon and night. Started this morning at 7:30. I've had a blood draw every hour or 2 hours. The last one is soon and then we can go home!
Kim and I are hopeful that this drug can do me some good. I hated to give up on the supplement regimen, but the tumors are so aggressive that I felt I wasn't going to get any benefit from them. At this point I have to focus on eating as much as I can. Half as much food fills me up these days. A glass of water and a handful of pills fills me up. So I've rolled the dice and I'm hoping for the best. In the meantime I'm focussing hard on holding on to faith and gratitude.
I hope that everyone is well.
Roger
0
Comments
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Oh Roger:
I just hate that you have to go thru this but I keep the faith that this trial is going to work on those nasty tumors. A few years ago who would have thought that "just a kidney stone" would be good news.
You and Kim hang in there. Hopefully you feel the love, hugs, prayers and everything else surround you and they help keeping you focused and going.
Hang in there - Tina0 -
Roger
Like you and Kim, I too am hopeful that this new drug will be the one to help you.I am so sorry that you are having to go through so much pain...it breaks my heart.
I wish there was something I could do to ease your and Kim's burdens and if there is please do not hesitate to speak up. In the meantime I will continue to send sparks, and keep Y'all in my heart, and pray for you and yours, and meditate on good things for you.
I don't know about dice rolling but I hope the toss of the dice reveals the perfect numbers.
Take care Roger & {{{ Hugs}}}
-Pat0 -
Hi Roger, I've been thinking
Hi Roger, I've been thinking about you all week, but never thought that the trial would be as difficult as you've described. I am so sorry to hear that you've had such a hard time of it - and that nasty kidney stone certainly didn't help matters any. Wishing you all the best with the hope that this new drug will rid you of the tumors. Take care Roger, hugs, Cynthia0 -
hang on
Hi Roger,
Thanks for letting us know the update. Wow- I'm sorry the drug trial is so hard & also that you've had a kidney stone. But, as you said, a kidney stone is better news than you were fearing.
I will be keeping you in thought and in prayer for this to do the trick against those nasty tumors.
Hugs to you,
Lisa0 -
Roger
I hope you get to see the staircase + it takes you exactly where you want to be. I am so sorry you have had such a tough week; you sure don't deserve that! And a kidney stone, of all things. I asked my onc about the high doses of Vit C + she did have concerns about "crystals" forming in the kidneys. Who knows; at least the stone is gone now. I admire you for going with this clinical study + hope next time is not so hard on you. You + Kim take good care of each other, Councillor!0 -
Roger
Roger,
I hold you, Kim and your kids close to my heart and I keep you in my prayers. I am sorry that the trial has been so hard. Damn, a kidney stone. Yes, it is better than other news but I know how terribly painful it can be (our daughter passed one in June).
Roger, I want and pray for the very best for you.
Aloha,
Kathleen0 -
It sounds like an aggressive treatment Roger but you knowAnneCan said:Roger
I hope you get to see the staircase + it takes you exactly where you want to be. I am so sorry you have had such a tough week; you sure don't deserve that! And a kidney stone, of all things. I asked my onc about the high doses of Vit C + she did have concerns about "crystals" forming in the kidneys. Who knows; at least the stone is gone now. I admire you for going with this clinical study + hope next time is not so hard on you. You + Kim take good care of each other, Councillor!
that anything that hurts cures! that's literally what we say in Spanish !.
Seems an impressive trial and you are impressively well monitored ,so now try to be confident and relax! we will give you a hand with our toughs and prayers!.
Take care mate!0 -
Faith is taking the first step
hi roger,
you bravely took that step.
i pray your faith is rewarded, you are an inspiration.
hope is such a powerful emotion, goodluck my friend,
hugs,
pete0 -
This comment has been removed by the Moderatortootsie1 said:Sorry, my dear friend
Roger,
I am SO sorry you're having such a hard time. I pray you will be able to tolerate everything better, and that this trial will give you the results we all want for you.
*hugs* to you and your family,
Gail0 -
Holy Cow! Keep looking up and you will see the staircase!
My heart aches for your for the pain and trauma that you are going thru. But my heart also bursts with love for you that you would be willing to be part of this trial that will hopefully help others as well. You are in my prayers!
hugs to you and your family
Shanna0
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