The Leukemia & Lymphoma Society - Fighting Blood Cancers

This Question is Possibly Answered

58 Replies Last post: Nov 2, 2009 8:10 AM by joetom57   Go to original post 1 2 3 4 Previous Next
dx522   2 posts since
Sep 18, 2009
Currently Being Moderated
45. Oct 3, 2009 10:26 PM in response to: Tex
Controllable factors

Don't want to tread too deeply into controversy but I really have to back up Tex here - having the attitude that your survival is a direct manifestation of Gd's will is a very ethically dubious position - it implies that the people who don't survive were somehow unworthy of Gd's favor - At best, I feel, such a viewpoint is held because its implications are not fully thought through - At worst, it is a product of narcissism or ignorance of other's suffering - The more you see of other people's suffering, the less you are likely to have such a view - - - DEF MD

cwg   36 posts since
Apr 23, 2009

This thread has spiraled the wrong way.  We are a small virtual family and it is bothersome to read negative posts.  I am not saying we can’t disagree about an issue however we can disagree and still not hurt each other’s feelings.  This board is very important to me and it has provided great comfort and information for what my family has gone through when dealing with blood cancer.

We as a family should be encouraging each other and not pushing family members away.  If you have been hurt by this thread, please do not leave the boards.  We need everyone’s voice.  This must be a safe place to share.   I know we have all been through and are going through a lot of pain and sometimes we let our emotions get the best of us.  I think this post is an anomaly.

So let’s take a big deep breath and relax and remember a few simple rules:

1.  Stay on topic, start a new post if the topic changes.

2.  If you disagree do so politely.

3.  Remember we are a family.

PS Let’s save the Calvin vs. Armenian discussion for another board J

cwg

 

Tex   3,897 posts since
Apr 3, 2009

You know I'm usually right there to support you.  But I have to disagree with you as we often have to here.

 

Threads go in different directions.  They take on their own life and go where they will.  You have seen this even in the transplant boards. It is not up to any of us to police these boards and tell people where they can discuss what.

 

More than likely both of these folks are dopplegangers who just post under these names to cause trouble.  Certainly "Terrence" has every sign of being a troll.

 

Yes, their responses, especially "Terrence's," and mine which followed would have been more appropriate on the Open Forum.  But this is an unusual topic for this forum and it is what it is.

 

I'm sorry it bothered you.  However, I think the proper choice is to choose what you read rather than attempt to dictate who posts what where.

 

By the way, I do not think we need every voice.  There are some folks here who are just pissed off and enjoy being that way.  Or they think they're somehow special.  I'm not sure those voices are needed.  They tend to make others miserable.

 

But I would never suggest they go somewhere else as the guy you appear to be siding with told me to do.

 

Thanks for your support.

Prayers for my Mom, by Nicole   1,168 posts since
Apr 3, 2009

Heart Girl,

I want to thank you for writing this,"In regards to the questions about "my faith healed me" or "God preserved me", or  "I needed to learn a lesson so I got cancer".  I just can't go along with that and I'm a Christian.  People die every single day.  Where is God then?  The truth is that when we die, that is the day we die.  If, as Christians, we are so worried about death, then why do we speak so much about how wonderful heaven will be.  If you, as a Christian, absolutely have factual evidence that heaven exists, then why aren't we all pounding on the door and eager to die?  Just a little food for thought.  I had WAY to much time on my hands during treatment and was able to consider all of these things."


I have thought much about this since my mother died on Sept. 18th.  She was a Christian and she died..  This disease does NOT JUDGE, and does not discriminate, if so she would be here I feel!

hugs, nicole

Prayers for my Mom, by Nicole   1,168 posts since
Apr 3, 2009

Please note:  Thank you for listening!

 

I am an adult and a member so here I go:)


Thank you for posting all of these post.. It has been interesting for my thought process in dealing with my grief!  What I would like to point out is that my mom did everything she was suppose too, and for those who believe God will heal when you are a Christian and living the right way, then I want it to be known that my mom was not healed!  I like to think she was healed by leaving the pain here on earth!  I watched her suffer for months, if God had control HE would have came down and did something!  She lay there black and blue,  unable to speak and eat, tubes, needles, gasping for air on different occasions, and still did not get better!  I think if God would have been in control HE would have reached down and stopped this pain this torturing.  My God is a loving God and he does not want anyone to experience what my mom did.. Then I like to think it was the Devil working!  And in the end God won and my mom went to be with Him!

Even the best Christians, believers, witnesses, best of people die from this, and I know for a Fact because I witnessed my Mom die!


So for those of you who are here, stop and think.. You are HERE.. and unfortunatley we lose some of the best!  Whatever you may believe in , then go for it!  I felt the need to say that, because I gathered from a few post that my mom would have been healed if she would have been different, WELL she f****** wasn't! hugs, nicole

 

PS.  What contollable factors contributed to my mom's survival?  Big Whopping 0!  But it is great to know that so many have positive outcomes!  Enjoy your life and smile each day!

cwg   36 posts since
Apr 23, 2009

To all,

First off I am not taking sides on this issue and the rules for posting were just a suggestion.  My apologies if it appeared I was trying to dictate posting rules.  My goal was to try and defuse this thread which I failed to accomplish.  This virtual family and message board is very near and dear to my heart and I do not like to see the conflict.  So I will stop reading this thread and move on to a different one.

cwg

KRRock   20 posts since
Apr 10, 2009
Currently Being Moderated
51. Oct 5, 2009 10:06 PM in response to: dx522
Re: Controllable factors

Nicole  & Others

I suggest you read The Shack by Wm. Paul Young.  It is a great Life story from Death.  Yes we are all living on the edge of mortality and medicine in America can seem more like torture then healing.  But without hope there is no survival.  Grace & Peace to us all.

Kim

Prayers for my Mom, by Nicole   1,168 posts since
Apr 3, 2009

Kim,

I loved it!!  Also I love all of Mitch Album's books!  I am currently reading The Middle Place!  hugs, nicole

Prayers for my Mom, by Nicole   1,168 posts since
Apr 3, 2009

Nobody tells Tex to shut up!


Nobody puts baby in the corner!


Haha, Tex, you know I was trying to refrain, but you opened the door for me!  I really wanted to say something, but I didn't feel like be attacked, but what the heck, what do I have to lose!  hugs, nicole

p.s As much as I sometimes disagree I enjoy learning about other's perspectives.. Made a great conversation when dad and I were talking tonight!  hmm does God have control of human mistakes? How much does it increase your chance of survival if you juice, do yoga, herbs, and are just happy and joyful all the time?  Would it have made a difference if my mom would have been at Seattle Hutch or MD. vs IU hospital?  And i reckon the tip of my iceburg lettuce is.... What if Sis and I would have never of called the hospital and reported mom's pain and that she needed to be seen, would this have never of happened, would she never have aspirated leading to death or was she destined to die on Sept 18th>  Okay going to bed now, enough sharing tonight!

Lesley   12 posts since
Jun 20, 2009

I don't post much anymore but:

 

In regard to the original question: Hey when you're survival is on the line (as mine was five years ago now) I was willing to try anything!!! I invited people to pray for me, I used Reiki, bloodstones, gems, meditation, relaxation, journaling, research/learning everything I could so I could be proactively involved in my treatment, practical things like fastidious hand washing and obsessive self protection against germs. As such, it makes it rather difficult to come up with any claim as to what contributed to my survival and what didn'tl. I do know I've seen many people who fought a damn good fight and died. I

 

t is not for me to say that a, b, or c contributed. Where does old fashion luck fit in? What about a stellar health care system and team of oncologists (within the context of a publically funded health care system that works very well despite other claims -- I'm Canadian). What about ethnicity and class? (we know that people of color and poorer folks experience considerable disparity in health outcomes in cancer care with poorer survival rates than those of us of the dominant culture) ... Another thing: There is evidence in the psycho-oncology realm though that does debunk the idea that prayer or even positive support (support groups, etc.) contribute to longer survival ...

 

Thoughts on any of that? (and possibly some re-direction from the rather mundane interventionist God, vs. non interventionist God, vs. no god/gods discussion possibly??)

Terrence   10 posts since
Jul 4, 2009

Lesley,

 

I had a great primary physician, Domingo Hong, who was very observant during an exam.  He referred me to a fantastic oncologist, Thomas Zukowski, who was extremely thorough and compassionate, which helped my wife and two young boys to handle this change and a wonderful radiation oncologist who walked us through the process and put our minds at ease as well as an excellent pulmonologist who guided us through the complications after radiation.  They all had a great staff.  I live in Milwaukee, Wisconsin.

 

For me I can't remove God out of the equation, but I do want to give credit to those He placed on this earth to help me and my family along the way.

Tex   3,897 posts since
Apr 3, 2009

I think the question of what's "controllale" is part of what's up with this whole discussion.  By "controllable" do we mean that we can control participating in things (like getting Reiki) or do we mean these things control our cancer.  Aimee did ask what we believe but I think things can potentially get out of hand, especially when people start claiming subjective experience as concrete proof.

 

Up until recently, there have been some good discussions of various ideas here.  As for the health care system, ethnicity, etc., I don't think those things are personally under our control, certainly not once we've been dx'd.  I'm sure those things factor in somewhere but that's a research project for someone else.  I was done with research when I left school.

 

I am of the personal view that being proactive in treatment and hand washing probably helped you a lot more than the other things you mentioned in the first paragraph.  Oh, I had massages, prayed, did visualization (and felt kind of silly myself and even began thinking on superficial evidence that drinking a can of V8 and taking a walk would help my counts recover (it didn't).  But when it's all done, I think it was/is mostly luck...whatever the hell that is.  Well, luck and the fact I got to the Hutch.  But Hutch patients die, too.

 

About the prayer thing and the evidence you sited, CS Lewis once wrote about testing prayer.  He said it would be impossible for a group of Christians to test prayer.  If, for example, a group got together and prayed for all the people in Hospital A but not for the patitnets in Hospital B, you couldn't prove anything regardless of the outcome.  It would be essentially un-Christian to ignore the people in Hospital B so whatever you wound up with wouldn't be a test of Christian prayer.

 

That said, I've seen some amazing things in experiential prayer.  In a class in seminary we prayed for one of the saints of our church who was in a local hospital.  When someone asked about it later, she said at the moment she felt a wave come over her and she knew she was being prayed for.

 

Even more interesting to me was that one of my classmates told a woman in her church about this and the woman asked her to have us pray for her.  Well, class was busy that week and the prof couldn't bring that up until Wednesday.  The woman had expected us to pray for her on Monday and was upset all Monday and Tuesday that our prayers hadn't worked.  At noon on Wednesday (just as we were praying for her) she felt a complete sense of peace about the things that were bothering her.

 

Certainly that could be a coincidence.  But that's a pretty weird one.

 

I believe prayer does something, I just don't know what exactly.  But I think it's more in the spiritual/emotional realm than in the physical.  Still, I've seen yet other things that have blown me away.

 

Now, about the gods/no gods thingy, let'if you want to go that way you might want to consider  doing that on the Open Forum, okay?  If you think this little spat has been weird, you ought to see what happens when we get agnosticism/atheism out on the table.  My goodness, all kinds of people come out of the woodwork!

Tex   3,897 posts since
Apr 3, 2009

Nicole,

 

While the "what if" game can be interesting, please don't let yourself get dragged into it.  I've seen it drive people crazy and there's no way of knowing what, if anything at all, could have changed the outcome.  And there's always the possibility that any changes might have made things worse, anyway.

LauraB   7 posts since
May 12, 2009

For me it's always the support of family and friends, the power of prayer and to set goals.  Take one day at a time.

joetom57   13 posts since
Nov 2, 2009

Hi there:

 

On this post,

58. Oct 26, 2009 4:58 PM in response to: Aimee

Re: Survivors:  What are some controllable factors that you believe contribute to your survival?

For me it's always the support of family and friends, the power of prayer and to set goals.  Take one day at a time.

 

I do agree with this one as yes the support of family and friends along with the power of prayer and maybe to set goals and to be in control of your own medical treatment(s) and to know and undertand what is going on and what is happening, does all help. My Oncologist/Hematologist and told me at the beginning that I was in the drivers seat and in control and that I needed to communicate with him about everything. Especially about like I either got a cold or was running a temp or whatever., I made it through six months of treatments ok and I tolerated all of the treatments ok, Things went just like my Dr had thought. Now my Dr said that even though I am in remission that my immune system will never be the same as we know how CLL can be. Also my Dr had said that I was getting the same kinds of chemo drugs and treatment that I would get at somewhere like the MD Anderson Cancer Center in Texas. Now I have thought about mayby going to MD Anderson and that can always be a option if I ever need to decide on something like that. But for right now, I do feel that I have been and am getting the best treatment that I could get at this stage and time. But if the CLL flares up and things get really bad, then going to MD Anderson is a option that I would consider, if I feel that it is needed.

 

That's it for now. Take care till later. :-)

B4N Joel (aka joetom57) :-)

 

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