Monday, June 16, 2008

Confessions of a Closet Nutritionist

Good report from the lab this morning. Igg's have dropped from 1749 last month to 1501 this month. All other measures of myeloma (M spike, beta 2 globulin, and kappa/lambda ratios) are almost identical to last month. There is still evidence of myeloma, as reflected in the M spike number, which should be 0, but is 1.2 (it has been as high as 2.7), but things continue to be stable. Spreading the steroids over 2 days has had little effect, other than I get a little more sleep on Mondays, but still am wiped out on Thursdays and Fridays as I crash off the chemo and/or the steroids. Oh well, we have a comfortable sofa in the basement for me to nap on those days.



So, what's with this "confessions of a closet nutritionist?" For the 2 weeks prior to the last blood draw I took a mystery nutrition drink a friend sent me. Without elaborating on the story behind it, he claimed it had some curative effects on some cancers, was made of amino acids, and urged me to drink it. The 4 quarts of clear liquid arrived in unmarked bottles, sitting in an unmarked box, with no instructions or ingredients. The only markings were his return address on the box. I let it sit on the counter for a couple of days, as I contemplated whether to "take the plunge" into the unknown. Then I decided to see if it would poison me. Having survived the sampling, I took a little more the next day. Still no adverse effects. So I went full bore and drank 12 ounces a day for 2 weeks. In the second week I noticed a definite increase in my energy, even managing to complete some to-do lists (a rare feat for me). Of course, I was a bit nervous about my numbers, worrying that maybe my mystery drink would interfere with my chemo, and have the opposite effect on my numbers. So, this month's report was good news. The numbers haven't changed much, but the increase in energy is encouraging and I think I'll ask for some more mystery drink. There are some who might call this "snake oil". But I just learned that clinical trials are going to start on this drink at the University of Utah within a few weeks. So they must have some legitimate studies to get it to that level.


Finally, this entire episode gives me (and now you) some insight into how much those of us with terminal illness would like our lives to change. Yes, we keep our chins up and endure, but make no mistake about it, when given even the slightest hope that maybe things could change for the better, we're likely to pursue that hope. We can't tell our doctors, because we know their advice is-- No, you can't take the chance with an unknown. Yet, they're giving us toxins with many unknown side effects. In my case, even those toxins bring no promise of a cure. So, we weigh the risks and often tell ourselves, maybe, just maybe, this will work for me. Delusional? Perhaps. But what do we have to lose? So, it seems I have not stumbled onto a cure; but I have found something to help with my fatigue. That's all for now: I've got a to-do list to finish!

P.S. Great movie tip: If the documentary "Bigger Stronger Faster" comes to your town, it's a must see. Not just because it involves one family's exploration of steroid use, but also because the director is Chris Bell, nephew of Arlene and Jim Bell. Arlene, as you know, is a frequent blogger, and is Susan's first cousin. In addition, the movie was featured at both the Tribeca and Sundance Film Festivals this year. (keep in mind that I am on corticosteroids, not anabolic steroids--hence I put on pounds of fat, not muscle)



Much love to all, and a belated Happy Father's day to all you Dads.

Dan

9 comments:

Joan Walton said...

I am delighted witth your numbers. Whatever works,go for it.I love you and pray every night for you. Love,Dan's Mom

BJ said...

good numbers good news and keep doing what feels good Dan, I like the fact you have the vision to see that lots of things make us feel better...amino acids, swimming and even doing those wonderful chores on the to do list. Big hug and love from the other side of the family :)

Big Frank Dickinson said...

Dan,
I don't know what it is that you are drinking - but keep pouring it down. You are on the cutting edge. Great numbers for a great guy!

Tom

johns said...

This is really a strange coincidence. Dan mentions that Susan's First Cousin directed a film called Bigger Stronger Faster. My First Cousin, Richard Schiffrin, was the Executive Producer of that film. Dan is the President-Elect of the Colorado Trial Lawyers Association of which I am the Executive Director. Does this mean I am related to Dan? I guess we are all related and I consider that an honor as Dan is the greatest role model I have ever known. His dignity, his spirit and his honesty are an example that we can all live by. (now does that get me enough brownie points?)

Mary VM said...

Dan,

It is great to see that you are doing so well. I hope that things will continue get better.

Mary

Arlene said...

Dear "johns",

I am sure that your cousin Richard Schiffrin would agree with the Director of BIGGER STRONGER FASTER* - Chris Bell's Aunt Arlene that you not only scored some brownie points, but you surely scored some "BROWNIE POINTS ON STEROIDS" :) Tell Richard that Aunt Arlene and Uncle Jimmy say hi.

Cousin Arlene

sailor said...

Dear Dad,

Great news about your drinking the "amino acids liquid". I still stand 100% behind the Pau-d-Arco Tea from Roger Delong as a support for any cancer battle. My dog, Delaney, continues to enjoy 11 years of remission from her mast cell tumor cancer. The tumors form, but never negatively impact her quality of life. She is getting old (13 years), but her cancer is of no threat to her survival. Here's to all the cures not certified by the AMA!!!

You continue to be an inspiration to all of us. Have a wonderful summer of good numbers, good news, and great quality of life. Thanks for sharing your trip into the "closet"--Good for You!!!

In peace and healing,
Sailor

Sigun said...

dear Dan.

keep on drinking that mystery drink! It must have taken courage to try it, though... Can't wait to see you in Santa Fe! Bises, Sigun

Ingrid said...

Dear Dan,

seems one more time, I can understand exactly what you write. You say, who is affected by terminal disease is willing to try anything, being aware that there is nothing to loose.
May I hang in there with you, also the chronicle diseases have the same affect on the patient, the hope for improvement just never disappears.

And I just got a new book. And maybe you know, how little I read.
Well, this book is related of course to diabetes, but referring to a chronicle disease, to the relationship with the doctors, it talks about that damn fact, that you try something new, and then can not tell it even your doctors, being afraid of the NO you might get as an answer.
It talkes about how to relate to your doctor, and how the doc should talk to you, How the doc should realize that having a chronicle patient sitting infront of him, he as a doc should not tell you what to do and how to do it, but give you all the info he/she has, and let YOU decide on what's best for you.

I hope you can tell Dr. Rifkin about your mystery drink, about this new Cocktail, because it would help you feel less guilty towards him, having a secret.

The book talks as well about the guiltyness, that chronicle patients have continously, trying so hard to do their best, with very often so bad results, and that this feeling of guiltyness has a huge impact in all their live, in every desicion they need to take, in every conversation they have, because this feeling of guiltyness is always there.

This book is written in German, but maybe you can find some literature in this regard. This one is called Psycho-Diabetology, written by Karin Lange and Axel Hirsch. I don't know whether there is a translation, all I can tell you, is that feelings of guilt and relating to your doc are probably two matters that keep your mind pretty often occupied, and that there is somewhere out there help!
I myself found this book only now, after battling for 27 and a half year with my disease, I hope you find your book sooner.

Love you, big hug,
Ingrid