Date:Â Â Â Sat, 20 Oct 2007 13:23:52 -0400
From:Â Â Â Don Schultz <donschultz@INAME.COM>
Subject: Lisa Suhair Majaj and new normal
You have misinterpreted acceptance of a new normal.
It is not just quitting as you imply. It is
inclusive of accepting side effects of treatments
that extend life. It's accepting TOGETHER that the
PN from Thalidomide isn't going away, and
celebrating that the drug did bring about a long
term response.
I'm posting this response to Lisa's comments because I think the comments raise important issues.
I have chosen (and I think that Lisa has also) to not accept everything from my six months to live dx to side effects such as nerve damage, chemo brain, etc. When i say that I don't accept them, what I mean is that I continue to try to find therapies to heal each. I have been somewhat successful with each but only somewhat- and of course I'm still alive. I still agree with Lisa. DavidÂ
Thank you David. I appreciate your input. I knew that my view would not be popular on the ACOR list, but I felt too strongly not to speak out.
I understand that our struggle to heal my husband may not be successful. Or, it might be successful for a while and then not. I understand the value of accepting that things have changed, in the way that life always brings change. Barb's point about never feeling entirely safe again is, unfortunately, all too true, for instance.
 But I think it is important not to accept too much up front. If I had simply accepted that with Thalidomide comes PN, I would have not done the research I did to try to forestall it up front, and perhaps my husband would have PN now. He doesn't, despite 8 months of Thal. Who knows why? Perhaps it was the plethera of supplements he was taking along with the Thal. Perhaps it was the coffee enemas which got the drug out of his system instead of letting the toxicity accumulate. Maybe he was just lucky. We'll never know for sure. All that matters is that he doesn't have PN.Â
 My emotions vacillate wildly from day to day. Some days I feel optimistic and think we can keep the disease at bay for as long as it takes. Other days I succumb to despair. (That often happens after I sit up too late at night reading the ACOR list!) I would guess that these vacillations are normal. All I know is that there are too many people who have survived when modern medicine told them they would die, and quickly, for me to give up hope. (Reading the Gerson list has helped, because there are a couple of people posting there who were supposed to have died 20 years ago.) And, when you have hope, you don't just accept the new normal. Maybe you accept it as a waystop on the road to healing. That's ok. But healing is a journey in which things get better. That's the hope I'm holding on to. And hope alone has medicinal qualities. My husband needs that hope, and so do I. So, we're just going to keep our sights on the path of healing, and take it step by step.
Don commented that
"You have misinterpreted acceptance of a new normal.
It is not just quitting as you imply. It is
inclusive of accepting side effects of treatments
that extend life. It's accepting TOGETHER that the
PN from Thalidomide isn't going away, and
celebrating that the drug did bring about a long
term response."
Lisa responded, in part
" But I think it is important not to accept too much up front. If I had simply accepted that with Thalidomide comes PN, I would have not done the research I did to try to forestall it up front, and perhaps my husband would have PN now."
I think that it's important to be clear on the idea of "the new normal." Lisa mentions not accepting too much. I agree. Lisa and her husband tried not to accept pn from Thalidomide and pn did not result. Â
I do not think that the new normal means "quitting" as Don Shultz says. I think that it is important to learn as much as you can and try to manage your health and myeloma as best as you can. DavidÂ
I felt I had to give my two cents worth on why to stay involved and not to reject anything out of hand, either from your oncologist or other sources. If it is working or not working, everyone will know soon enough. Just remember, to keep an eye on creatinine, WBC, RBC, and platelets. Any treatment may have to be put off for a period of time for a more rapidly acting treatment such as dexamethasone, Revlimid or Velcade in order to live to fight another day. And in my opinion, we need to always be aware of when any of these values reach a point when we are going to wind up in the emergency room and act accordingly to avoid this act all costs. Once we wind up in the hospital, they will take you off everything and then the game may be over.Â
For me, staying involved has allowed me to maintain hope and resist depression. In my opinion, maintaining hope and resisting falling into depression is the synergy you need regardless of what stage you are at or what treatment you are taking. Just remember the plecebo effect has been exhaustively studied and up to 30% of the time works as good as the treatment. I try to verbally acknowledge to whomever is in ear shot whenever I have a good day.
Now for a little bit of bad news which may keep one of you out of trouble. I go to a dermatologist twice a year simply because I have moles and my immune system is not all it is cracked up to be like the rest of you with MM. Well this last time he took biopsies and the lesions that most of us have who have gone partially bald from the top of my head, came back precancerous. The treatment is a cream applied for four weeks called Carac which contains 5FU (chemo drug). I won't go into the details but the literature promises the treatment won't be pretty or comfortable. Never the less, I am sure it will beat contracting melanoma. The lesson here is never let your guard down and try to anticipate problems.
Stay Involved!
Terry
Terry, glad you caught those lesions in time! Hope the treatment turns out better than you expect, and that it resolves the issue completely!
 As for staying involved - I've decided to be proactive in structuring my involvement. For me, right now, it means less time reading about conventional approaches and more time doing the alternative stuff right, as far as we can, and then living a little bit more. I've decided I dont' have to read about myeloma every waking minute. Maybe a funny movie would be a better option once ina while!Â
LisaÂ
Lisa- Regarding "structuring my involvement" I am trying to make the beating-myeloma.org site, list, patient studies, both complete and effecient- by this I mean that someone like yourself can get the digest each day, quickly read (post as you see fit) it and feel as though you have done your mm homework for the day. I search the web each day looking for info (conventional, cam, integrative- all) that may be of use to members.
I am always open to ideas from members as to how to make the site/list more useful. DavidÂ
David, you're really providing a fantastic service with this website. Thanks for all your efforts!!
LisaÂ
Terry-
"For me, staying involved has allowed me to maintain hope and resist depression. In my opinion, maintaining hope and resisting falling into depression is the synergy you need regardless of what stage you are at or what treatment you are taking. Just remember the plecebo effect has been exhaustively studied and up to 30% of the time works as good as the treatment."
I am happy to read that someone feels the same way I do about staying involved. In fact, the b-m.org site and this list help me to stay involved- it's theraputic, I think. My wife thinks that I overdo it but...
Secondly, I too had a mole removed about a yr ago and dr just said that the testing determined the mole was "questionable." My point is that I am glad that I didn't let my guard down. Thanks, Terry. David Â
Linda M - Houston
Hello everyone; I have been looking at Gerson with interest for a few weeks and I am wondering, Lisa, what list you are referring to? I agree with you that hope plays a huge role in recovery of any kind. I enjoy your posts, and am learning so much for you all. Thank you.Â
Linda, you can check out the home page at http://health.groups.yaho...
and join the group from there. It isn't too active (people have other things to than post, like make juices, I guess!) Also, there is a really annoying spammer that no one does anything about (the moderator of the list seems largely absent). But I've been helped by posts from several people, and the archives are also helpful (although there is some kind of a bug and I cannot access all the posts.)
Also, I am now considering working long distance with Kathryn Alexander, a Gerson practicioner in Australia. Her website is www.getalife.net.au/ and I learned about her through the Gerson list.
There seems to be a split in the Gerson world between those who wish to apply the protocol exactly as it was when Gerson developed it, and those who see place for updating based on new information. Kathryn appears to belong to the latter school. One thing that has my interest is that although Gerson forbids supplements beyond very particular ones, Kathryn feels there is room for individual supplements - she mentioned curcumin in particular -Â on a case by case basis. Also, she worked briefly with Michael Gearin-Tosh, which is a matter of some interest to me.
By the way, I cannot respond to the thread that Shirley has been posting on, about curcumin, because of a bug on that page (at least on my computer). So, I just wanted to say to Shirley, hang in there. I really do believe in the importance of hope (and this list has given me a lot of that). I also wanted to mention, with regards to the bioavailability of curcumin, that my husband also takes curcumin with digestive enzymes, which are another way, I've read, to potentiate bioavailability. When my husband takes curcumin (twice a day), he takes 1-2 grams of quercetin first, then 15 minutes later he takes two fish oil capsules, 4 grams of curcumin, three pancreatin tablets, three Wobenzym digestive enzymes, and 1-2 probiotic capsules. That sounds like a lot, but since we don't know what is or isn't working, we're hesitant to stop (especially since we stopped the Thal/Dex.)
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