Boy do I hate that overused phrased. Not "opinions wanted" or course but the ridiculous "taking it to the next level" which is so overused and yet apropos here so I find myself forced to use it.
I have come to adore all of you, my friends and family and acquaintances and fellow MM sufferers / warriors / wanderers depending on your disposition and preference. :) And I love the little community that we have here.
At the same time, I have come to realize from a variety of sources that my experiences in going through diagnosis and treatment, and my honesty in recounting it without regard to my dignity (though thankfully there's been a little less of those awful experiences lately!) and my particular attitude towards fighting the disease, plus the time that I had to research my options and learn about the disease, all contribute to making this blog something that can be very helpful to newly diagnosed patients, as well as patients going through the treatments, and their caregivers.
Wow, what a tortuously long sentence.
I found some of the books I bought on Myeloma left a little to be desired when I was diagnosed, and if nothing else, my voice is certainly different from the books I read on the subject. I wrote in here a couple of times during treatment that one book I read said that "life will never be the same" and "you will measure your birthday from the date of your transplant" etc. etc. and how this seems incredibly defeatist to me. I am not trying to take anything away from the experience of that person -- everyone's disease and everyone's approach to it is different -- but I would have been helped, I think, by a different voice. And I hope that my blog can contribute to such a voice.
So my question for you fine folks is about format. Here's what I was thinking:
* I think the honesty of my blog is of paramount importance. There are times, for example, when I was on dilaudid and my thoughts were probably incomprehensible and filled with spelling mistakes. I don't want to edit these out.
* I think the gradual reveal and increase in knowledge in the blog is important. There are times when I didn't know as much and the comments or questions I posted here reflected some of that lack of knowledge -- whether it be misspelling (or misremembering) one of my medications, or not understanding some aspect of the disease or treatment. I don't want to edit these out.
The solution, I think, is to have each blog entry, and then beneath that an italicized update / errata correction / other notes to put the entry into a more full context as needed. I'd like your thoughts on this, hence the poll on the page.
Secondarily, your comments and positive urging along the way are a critical piece of this blog. When the time comes, if it does come to being published, I'll ask you individually (to the extent I am able to reach you) if it's okay to include your comments. I will almost certainly exclude names from them, however. For a preliminary indication of your thoughts on this, another poll is featured.
Thirdly, I have used initials for all medical personnel throughout, and I wanted to preserve anonymity in case I had something less than flattering to say about one or more of them. There is one doctor who I had a bad consult with, for example. And another whose opinions I think are dangerous. And these opinions might not be something I want to publish. On the other hand, the majority of doctors are fantastic, and anybody with Google and a modicum of interest has certainly already determined who BB is. Moreover, I believe many of the doctors herein saved my life, and I want to call them out by name (certainly BB, and several others).
So I'd also like your thoughts on how I might effectively use the full names where appropriate.
Thanks very much for your thoughts on these burnings issues!!! :)
P.S. Mandatory clinical update: 20mg of dex was enough to keep me up until 3AM. Next time I must take Ambien on "dex days." I will also be adding two supplements for general health and to ensure no neuropathy from the Velcade -- the Alpha Lipoic Acid in the morning, and the MetNx at night (as the latter can cause drowsiness). I might try to get some Vitamin D in there at some point although I don't want to boost the immune system too much since the goal of all these meds is to keep it somewhat suppressed.
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Hi Nick,
ReplyDeleteFirst off, GREAT idea, as I think this blog would be priceless to anyone else dealing with MM (or even another form of cancer).
I did the poll, but wanted to add something about the doctor's names. One option is to simply ask them for their preference. In fact, you might even ask for a written "acceptance" that they're OK with full names, to CYA, if nothing else. Otherwise, full names for the major ones, initials for others.
I also agree that for any you didn't like or agree with, I'd keep it to initials regardless of how you handle the others.
A couple of other thoughts on publishing: (1) You might consider publishing as a free PDF, to reach as many patiens as possible, or (2) publish in book form, portion of proceeds going to an organization fighting MM or cancer in general, or (3) see if there's a major MM organization/site that might want to include it on their site as a "patient experiences" document (perhaps adding others', too?).
Advantage of the PDF is that it's easy to update and reaches more people, but obviously that's a very personal decision depending on your goals for it.
Take care,
Craig
This really is a good idea. I voted against using initials though (hopefully no one will stone me for it) because of one big reason:
ReplyDeleteIf you publish this, it will be a benefit to all of your readers only insofar as they can utilize the information you provide. Why censor for the sake of someone who performed at less than par quality? Slander/libel is one thing--so be careful there if you feel some of your comments fall into that category--but barring that your comments and experiences should be true to life. We rank our restaurants on Yelp or Google and that is freely available to the public. Why should doctors have protection, especially when we are talking about peoples' lives?
Obviously it is your choice in the end but I wanted to voice my reasoning for voting the way I did.
Just a thought. The radical snake charmer right out of "Deliverance" that did your first FNA(you know the one I'm talking
ReplyDeleteabout "Did you work for the mouse when they made this movie?" may have to go underground if you publish his name. He might be hunted down by a dex-fueled, angry mob of MM'ers. ;o)
Good point about RVH, the interventional radiologist darling of the religious right! :) He will definitely remain hidden.
ReplyDeleteThanks to all of you for your opinions -- keep 'em coming!
I wanted to add that keeping the medical personnel (all) in initialized form provides anonymity which can be a double-edged sword, but if an individual really needs more details, he or she can certainly make contact with you for details, can't he/she?
ReplyDeleteWhen I first had to start learning about MM, I read every entry on Andre's, because he was so frank and personally 'out there' about what was going on... I really didn't need to know WHO was doing what to him or for him, but I did need to know WHAT was going on. Thankfully his blog is still up for the newly diagnosed and their families to read. And that is why I think your plan is a very good one - education is half the battle. Hat's off to you, Nick... I drink to your good (and continuing) health!
Nick,I do believe that names of medical personnal should be kept private - certainly when nothing good can be found to say about a certain Doctor/Consultant but then, if you feel a Doctor you have come across to be outstanding in knowledgable terms, why not name him.(We do know who your are talking about when you say BB!) Very often a certain consultant can work/appeal/be trusted for one, and yet not another. It could be a dangerous road to go down for you to name and shame, you have a enough to contend with. I think your blog, just as it unfolded, should remain the same. It is a valuable diary, of great use to other newly diagnosed MM sufferers. How I drank the words from every blog or book I could find on the subject when Hamada was first diagnosed. I searched, researched spent hours on medical pages of the internet, until I was satisfied that I could at least understand what the Consultant was talking about and advising, as Hamada was at the time, too ill to cope with anything other than his own personal fight. You have dealt with everything in a matter of fact form - telling it all, just how it was for you, as you learnt as well or certainly began to understood everything. This of course will unfold differently for everyone but the basic facts are there for all to assimilate, how that really helps. I wish you every good luck with this continuing project. It is totally worthwhile. Keep safe and well Nick.
ReplyDeleteHi Nick-
ReplyDeleteI just wrote a post on my www.multiplemyelomablog.com recommending my readers follow your site as well. Keep up the great work and hopefully I will meet you in Boston! Pat
Nick, I honor your disease and the steps you have taken as you deal with your disease. But I must say that your pathway is not exceptional and does not require a book. Every ones path is exceptional. You are fortunate that your therapy has resulted in a period of remission but let's not get a God complex about it.
ReplyDeleteBrother Ted, what an embarrassment you are to yourself. Nick has been a tremendous help to those who are afflicted with this terrible disease and those who are caring for them. I invite you to read EVERY comment from those who follow to see just how helpful and inspiring Nick has been. It's not a God complex, it's a positive attitude. A God complex would indicate that Nick was curing this disease...which clearly he is not. He is merely attempting to help those who are searching the internet for some answers -- ones that he was probably unable to find during his research. Of course it doesn't REQUIRE a book, but it sure would be helpful for those who can't easily find information spelled out in a very simplified manner.
ReplyDeleteI, too, am a follower of "Scoop on Dan" and he is CLEARLY VERY PLEASED about Nick's progress and encourages him with comments on the blog to continue down this very difficult road. What would he think of your idiotic remarks? I'm sure he is as disappointed as the rest of us.
Do everyone a favor -- especially yourself -- and don't ever visit this sight again. You are a downer and no one here wants to ever hear from you again. Take a hike!
Ted -
ReplyDeleteI'm going to take the high road, particularly as we evidently have mutual friends, and simply say that I was saddened that you misunderstand me, and saddened by your singularly disheartening appraisal of my condition, but I thank you for taking the time to post your thoughts. You might ask Susan and Dan if they think I have a God complex, or if in fact they find me humble.
I have no illusions about this book selling well and it's not about glory or money (if any was made, it would go towards Myeloma research anyway). It's to be a resource to people, and judging from the many responses I've received to this blog both here and through private email, I know it is helpful. So I'll press ahead with my plans and let things fall where they may.
Card Shark, thank you for your very impassioned defense. I'm going to give Ted the benefit of the doubt and assume that he didn't intend his message to come across the way it did.
Ted, I hope you and yours have a healthy, happy and Myeloma-free life.
Regards to all,
Nick
Nick- keep being a resource, it's definitely helped us in our journey. The fact you and your met up with us down in Arkansas for a meal shows that you in deed have a God complex. The God that I know and trust meets with anyone who is willing to call on his name. Thanks for responding as a resources for us. You do have a very strong personality, and I think that has served you well over the last year. Keep being you. Blessings bro, Phil
ReplyDeleteP.S. Chemo officially started yesterday (RVDD clinical trial followed by BMT at U of M). You guys were a big reason we ended up where we did, so thanks.
On initials, you can easily do both. For the main characters such as Dr. BB you can use the full names. For the minor ( and less stellar ) characters, you can use initials.
ReplyDeleteBro Ted is one of the 2 1/2% of the people in the world that keep us from having a Utopia. They are the ones we have to write all the laws for. Its funny how a negative comment amongst 100s, 1000s, or more, will be the one that sticks. And you know what? They know that. Its an intention that is quite evil at its worse and insulting at its best. Ask some Artist's friends of yours when you get the chance, they attract these kind of people because they are creative. You have now "expressed" yourself, you have "created", and you will get hits like this from time to time. Know it for what it is.
Best,
Lori
Damn. Things just got all Kanye-West-at-the-VMAs up in here. Gnarly.
ReplyDeleteNick, just to echo what Phil said you and Jill have been such a tremendous help to us. Your journey is exceptional BECAUSE everyone's journey is exceptional. You hold a valuable piece of the puzzle just like anyone going through this does. And I encourage you to share your extensive knowledge and your experience through any means possible. In other words, if you wrote a book I'd totally buy it, bro.
God complex? Not at all. Humble is a better word.
ReplyDeleteBook a great idea? Without doubt.
Ted's comment: Utterly inappropriate.
Nick's response: Typically classy.