Monday, August 25, 2008

Numbers Rise But I'm Not Going There

Started this historic day in Denver in the infusion center (the Democratic National Convention is here). IGGs have moved to 1674, up from 1445. I am surprisingly unfazed. One other marker has gone down---beta 2 microglobulin is at 1.4, down from 1.7. The M protein (or M Spike), which measures the level of actual myeloma protein, was not available. I know that the IGGs can jump around a bit. I also know that in order for a "trend" to be identified, I need 3 points in a line. So this is but one point. Although fatigue is always an issue, life will go on.

Susan's cousin, Arlene, one of our regular bloggers, sent me a very interesting booklet called, "Year in Review---Multiple Myeloma: 2007-2008." It is most interesting because it sets forth the facts of numerous case studies and then asks four doctors how they would treat each patient. The four doctors are rarely in agreement. This booklet provides a very good overview of all treatments and these four doctors' views about when the different treatments should be used. My doc is clearly on top of all these therapies and, it appears to me, he is taking a conservative approach to my treatment, i.e., prescribing the fewest drugs and the lowest weekly dosage (only once a week). I am in complete agreement with his approach. Save the hammers for when the numbers run out of control. Thank you Arlene for sending this booklet.

Susan, Julia and I walked Denver's 16th Street Mall today and saw all the delegates, crazies, protestors, and heavily armed SWAT teams. Thousands of people milling around on the streets expressing their political views. It was great to see Democracy in action!!!

And finally, I'm told that if I mention John Sadwith's name one more time, he may win a prize on Google for blogger references. So here's to you John Sadwith, you are a great American.

I won't have another numbers report until early October. In the meantime, Susan and I will be taking a week's vacation in Florida; we had such a good time last year (although brother Mike won't be joining us this year). Until then,
Much love,

Monday, August 18, 2008

Where Have I Been??

Hello everyone,

It does seem that my blogging has slowed considerably this summer. From my perspective, this is a good thing. I guess it means I am spending less time sitting in front of the computer. Yes, that is a good thing.

But first the health news. I saw Rifkin Monday morning, had blood drawn, and will get my myleoma numbers next week. He is very encouraged at my continue stability. I have pushed him over the past several months about getting a month or two break from the chemo. It has now been 11 straight months of chemo, and although I tolerate it fairly well, it does take a toll. I mean how many of us really want to ride a roller coaster every week for a year? No, not fun, even in an amusement park.

In past months Rifkin seemed open to a break, but not so much yesterday. I guess he was just humoring me. Anyway, he ducked and dodged his way around my questions and I quickly concluded that he was not interested in discussing the issue. He continues to want to wait for completion of the clinical trials of Heat Shock Protein 90 (HSP 90)--the nontoxic chemo. You may recall from past postings that I did not qualify for the clinical trial because of my prostate cancer. Interestingly and as further confirmation of my doctor being deeply connected to current research, recently I met a man about my age who is be treated at Mayo for his myeloma. He carefully selected his doctor, is quite wealthy, is independently funding research and urged me to at least consider seeing his doctor. I talked with Rifkin about that today and learned that, in fact, Rifkin is working with this same doctor at Mayo. They are working on the clinical trials and will copublish the results. I continue to know I am in good hands.

So, what have I been doing? My involvement in the Leukemia and Lymphoma Society (LLS) has increased as we gear up for the Light the Night Walk in Denver on September 25th at Washington Park. The link for my fundraising site is: You can contribute right now by clicking on the link. My goal has jumped from $10,000 my first year (2006)--we raised $13,000. In 2007 I set a goal of $13,000 and raised $25,000. So this year, naturally my goal is now $25,000. The generosity of the Colorado Trial Lawyers and John Sadwith, and Darin Schanker (outgoing president) in particular, are responsible for much of the money raised; but that is certainly not to diminish the contributions of the many of you have donated and I am grateful for any and all contributions. Any amounts are appreciated. This year the trial lawyers, through John's hard work and generosity, once again, have already raised more that $6000 by sponsoring a suite at a Nuggets game. (those donations haven't yet been logged on the site, but soon will). For those who live in Denver, even if you can't donate please consider walking with us that night. It is quite a scene as thousands of walkers parade around the lakes of Washington Park at twilight carrying lighted balloons, in support of all those touched by blood cancers.

The LLS has asked me to speak at 4 or 5 events over the past couple of months--to tell the story of my ongoing struggle with blood cancer. I also was asked to film a spot with Comcast that will run once a day in September in Colorado on CNN Headline News. The spot is a 4 minute interview about LLS and Light the Night, with a smattering of my own struggles. After the interview I went home and took a 2 hour nap. Susan asked why I was so tired and all I could say was, "I now know what it's like to be a movie star!" Just kidding, of course, as I can take a nap anytime, any place. No, don't worry, this has not gone to my head. The response of the audiences I speak to is quite moving, and I am optimistic that with my help Colorado will reach its goal of raising $1 million in its Light the Night Walks this year. The LLS has set a goal of finding a cure for blood cancer by 2015. Of course, I am deeply committed to that goal. I continue to be very grateful for your continued support of this cause.

And I was recently installed as the president of the Colorado Trial Lawyers Association. Despite my numerous attempts to resign over the past 3 years, the association rejected those resignations, and elected me president last week. I am the first non trial lawyer, or mediator, to serve in that position. A number of people cautioned me against it, arguing that this will hurt my mediation practice, which I really need, in order to keep my health insurance in place. But, having looked over the abyss and realizing that my number can come up at any time, I have carefully chosen to use whatever energy I have to be involved in those activities that have meaning to me. The list?----(1) Taking care of my health, (2) spending time with Susan, Catherine, Julia, my mom, brothers, sister, and friends, (3) working at mediation in order to keep my health insurance in place and (4) working for worthwhile causes, i.e., LLS and Colorado Trial Lawyers. Why CTLA you might ask? Because it stands for protecting the rights of individual rights and keeping the courts open to everyone, without regard to status, privilege, wealth, or lack of all three. As an association we support both Democrats and Republicans, as we judge our supporters on their philosophical support of our mission, as opposed to their political party affiliation. I've discovered the wonderful thing about doing volunteer work is that however much or little work I do, it is always appreciated and when I can't follow through or show up; no one gets mad at me and they are highly unlikely to fire me. The LLS is quite tolerant of me, as I regularly get lost trying to get to my new venue for my short speech. Rifkin rejects the notion that these difficulties are due to aging and unequivocally attributes it to chemo brain. I find small consolation in that news. Along with a few other strange behaviors my family thinks I've just gone further off the deep end. Oh well, I may be crazy but I'm still here!

So that's where I've been. I continue to meditate daily and exercise regularly, as well as take my daily dose of the magic juice. Stability continues along with some semblance of peace of mind despite the weekly steroid roller coaster. In spite of it all I find happiness during most hours of every day. I am so grateful for the love and support I receive from so many and feel that this terminal disease has opened my life to wonders I never would have experienced without having been forced to walk through the fire. Thank you again for staying with us. I am humbled by your generosity and support.

With much love,