Memorial Service

A service for Dan will be held at 10:00 am on Tuesday, September 11th at Mile Hi Church, 9077 W. Alameda Avenue, Lakewood, CO. 

A scholarship has been established in Dan's name at the University of Denver College of Law. Contributions can be sent care of Colorado Trial Lawyers Association, 303 E. 17th Avenue, Suite 320, Denver, CO 80203. Contributions can also be made to the Leukemia & Lymphoma Society.

Thank you all for your love and support during this time.

Final Post

Dan died early this morning.  His family would like to thank all of you who have followed his blog for the past 7 1/2 years.  You gave him so much strength and support.

Deja Vu

Ten days ago we learned that the latest chemo regime of velcade/dex is no longer working.  My IGGs jumped from 4500 to 6900 and the M spike jumped to 5.0--while being treated with velcade.  No more velcade.  We have now moved to a regime of bendamustin, revlimid, dex, and prednisone.  We'll know in about 2 to 3 weeks if this is working.

The discussion with Rifkin was yet another sobering event.  He again emphasized that I did not need to continue with treatment and that it would be very reasonable if  I elected to forgo any further treatment and just receive palliative care.  This is the 4th time I've been given this option, going back to my first visit to MDAnderson in November 2009.  As with each of those previous "offers" I turned him down.  But I think we all know that at some point the chemo won't work and then the decision will probably be different.  There are no more new drugs; I've had them all.  No more transplants as my blood would likely never recover--i.e., produce white and red cells and platelets.  As it is now I need platelets every 3 to 4 days and blood every 10 days.  And this is just the effects from revlimid.  So we continue in this alternate reality of seeing a train coming down the tracks heading straight for us and wondering if, once again, I can jump out of the way.

And just to insure that I don't get too comfortable, my right arm decided to take a vacation, so to speak.  As you know the left arm is broken and can't be treated.  About 10 days ago, while pulling something from the freezer my right arm snapped and has left me unable to lift anything.  I also can no longer drive.  That is what we all feared when I first started having pain there about 2 months ago.  What are they doing about it?  Nothing.  As Rifkin said, we can't do anything with the arm we know is broken, we certainly can't do anything with your right arm.

Susan  and the girls are rallying in support, of course.  And we continue to enjoy our lives.  In fact I think we laugh more now than we ever did.  What are you gonna do?  We will enjoy our every minute together.

Susan and I celebrated our 30th wedding anniversary this month.  What a wonderful event.  We are as much in love as ever and just enjoy each other's company.  I have dragged her through the worst of times with this disease yet she continues to care for me and treat me like a king.

I wish I had better news to impart but, who knows, maybe I'll be able to report good news on the next post.
Best to all,
Dan

A Long Post Just to Say I'm Stable

My apologies to all of you who have been waiting for an update.  I am especially grateful to those of you who sent me emails asking "what's up?"  I appreciate your concern.  The delay was due to my waiting to have something to report.  Just received the analysis of the myeloma numbers from last week and  they are stable.  No change from a month ago.  So, once again  Dr. Rifkin has found  a drug combination to keep the myeloma at bey, at least for awhile.  IGGs went down 100 point and are around 4400.  M  spike went up a touch and is 3.0, up from 2.8.  I still don't produce any platelets so I'm at the hosptal every 3 days to get refilled.  Red cells hold a little longer --7 to10 days.  It's still way too often for both. 

Two weeks ago Rifkin took me off revlimid to see if my white count would recover.  It has moved upward a whopping .2 points and is now at .8 (should be above 2).  But at least it's moving and in the right direction.  I sense he's a bit nervous with my current chemo regime because my disease is notorious for exploding if not held in check, but my white count has been stuck at .2 for 2 months and that puts me at great risk for getting an  infection.  My current chemo regime is a shot of velcade (subcutaneously) once a week and every other day 50 mg of prednisone, plus a whole host of antibiotics, anti fungus, etc etc. 

The best part of eliminating the revlimid is the return of some energy.  I actually can accomplish a few things like running errands, going to lunch, posting on my blog (ha).  I also feel more clear headed.  I am also getting reacquainted with my appetite.  What a pleasure that is.  Not only do I have an appetite but I can actually taste the food, which has resulted in me putting on 6 pounds.  Oh yeh.  I no longer weight 148 lbs.  I think it was the bundmustin and the heavy bactrim he had me on that did in  my appetite for 3 months.

The NYTimes had a series of articles about gene sequencing being the new individualized cancer treatment.  Scientists have been looking at this for a number of years and it looks like they are making some tremendous progress.  I won't bore all of you with the details of what this is, but if you are interested you should check out the Multiple Myeloma Research Foundation website www.themmrf.org.  They are helping to run a clinical trial for newly diagnosed myeloma patients to study gene sequencing.  Of course, Dr. Rifkin and I are plotting our own strategy to get my genes studied. (I am the furthest person from "newly diagnosed")

Whew.  So that's the update.  I continue to be amazed at the ups and downs of this disease.  For some periods I am hardly capable of getting out of bed because I'm so exhausted and my bones just ache and then after a change in chemo I catch a few months where I come out of the fog, find some energy, and get a taste of life.  Dr. Rifkin and I have become good friends and I feel like we both know we are in this together.  I never complain (which frustrates both him and his nurses) but he seems to know when it's time to change the regime just by looking at me.  He has told his  staff, whatever Dan wants, give it to him (regarding appointments for labs, transfusions, and even treatment).  He knows that I am fully aware of my treatment schedule and he trusts me to keep the nurses on track,, if necessary. As we shook hands after my exam yesterday I told him he was doing a great job keeping me alive.  He just responded:  well, I've got to figure out what we're going to do next.  I'm going to email  so and so, talk with_____, and I will be seeing_____ in 2 weeks so I can discuss your treatment with him.  As long he as never gives up, I won't either.

And as for Susan?  Let me put it in her words.  When Rifkin asked her how she was doing she summed in up this way:  "As Dan goes, so go I."  She is worrying much less and getting out with her friends more now that I'm not staying in bed all day.

Love to all,
Dan

Update from Denver

It's been quite a while since my last post and lots seems to have happened.  First, it appears the bendamustin/revlimid continues to work as IGGs and M spike continue to move down, although a bit more slowly.  Or I should say they were moving down until I got pneumonia, which took me off the chemo regime for 3 weeks.  Then another week hoping that my blood counts--white cells, red cells and platelets would revive as they were significantly depressed from the 5 chemo regimes and then the high dose antibiotics.  In the midst of this, my right arm starts to bother me (that's my good arm) which prompts an xray, which in turn puts me back in radiation therapy, this time for the right arm.  I have the same degradation process beginning in my right arm and they want to get it before any bones break.  Yeh, I'm all in favor of that.  So that's where I am right now:  off the chemo, getting radiation, and hoping my blood counts revive.  I continue to need platelets every 4 days and red cells every 5 to 10 days.  Would like for my bone marrow to become a bit more productive so I could reduce the number of transfusions.  Not sure that's going to happen in the near term.  But I'm happy we have the bendamustin to knock the myeloma down.  Just after I got over the pneumonia Rifkin ordered me to take a vacation to a warmer climate.  Catherine was home at the time and became the beneficiary of our 4 day jaunt to Scottsdale to enjoy resort living.  Julia had to stay home and work.  As I told her, someone's got to pay for this.  Even though I did nothing, just like I do here in Denver, it was nice to be poolside and in the heat.  So that's the word from Denver.  Still going forward, one step at a time.
Best to everyone,
Dan

Disarmed

The bare bones facts: Iggs moved down from 4313 to 3750. A good step down and a downward move that was unexpected given the last IGGs moved up 500. So the bendamustin/revlimid regime continues to do its work.

This good news is tempered by the visit with the orthopedic surgeon. My ability to use my left arm is still quite limited. I can't raise it higher than my waist nor can I stretch it out from my side. Although this is some improvement over the last month, it is not healing very rapidly. The ortho thinks I have probably recovered as much function as I'm going to get. He said I had 2 options. The first one depends upon me getting my myeloma into or very close to remission. I laughed at this option, after 7 years and 3 failed transplants, but still asked him to elaborate. IF I could miraculously get into remission, then I might be able to undergo surgery where they would put a plate across my shoulder and humerous. Since option 1 isn't really an option (at least for now) I am left with option number 2: live with it.

I will admit this is depressing. I don't really have any use of this arm and was looking forward to its healing. It looks like its not to be. But then, as Susan said, it's your arm Dan, not some statistic, meaning, of course, that the odds don't seem to include people like me. So I'm going to try a bike ride soon. She just rolled her eyes with this proclamation. My sister jokingly suggested I tie my left arm to the handle bar. Right.

Well, that's it for now. The good news on the myeloma clearly overshadows the left arm issue. I'm sure I'll adjust. As the family reminded me, "we didn't think you'd even be here a year ago, so let's not worry about this." As always, they're right.
Love to all,
Dan

Seven Years!

Seven years ago today, on March 23, 2005, I received "the call" about my blood work. I insisted that my GP tell me on the phone what was up and it's all history now. At the time I never would have bet that I would be here seven years later, but here I am. What a journey it has been and what a remarkable group of friends you are to have hung in there with us all these years.

The latest blood work wasn't great, as the IGGs moved upward 500 points from last month. Rifkin is not concerned as he says they are still in the same "range" and other blood work looks good. In addition he says I look good--better than 3 months ago. I feel better and have a bit more energy, although some days are still difficult. When I asked Rifkin what he would do if and when the IGGs start running out of control. His response was simply, "I'll have to cook something else up for you." I still need platelets every 4 days but my need for red cells is now stretching to about 10 days, which is also a good sign. Suz and I are still quite tired of the 3 to 4 days at the clinic/hospital but so be it, if that's what's necessary.

My arm is out of the sling and I have some limited use of it. I feel like it will come around eventually, albeit quite slowly.

And that's where we are seven years down the road. Best to all of you.
Dan

Rolling Along

I finished my 3rd cycle last week and now get to enjoy 2 weeks of recovery. This first week has been a bit rough, cleaning out, but I feel like I'll have more energy by the weekend and then next week should be even better. We'll measure the progress in about 2 weeks, so no new numbers. I'm still dependent on blood transfusions and platelets, which requires me to be at the hospital at least twice a week, in addition to 2 clinic visits with Rifkin.

My arm is healing, albeit slowly. I still can't use it but the doc says the humerous is staying in place--in the shoulder socket, so if I continue to keep it immobile, in time it will heal. That does make driving and other activities challenging, to say the least.

I met a man at the clinic last week who was diagnosed with MM in 1999. He has been through 4 transplants and is in about the same place I am in terms of having had every drug imaginable and hoping for a new drug to appear. Gives one hope to have a companion on this journey and to know he's got 5 more years logged than I do.

I can't wait for Spring. Although this winter has been mild, I still have cold most of the time. I told Rifkin I need a vacation where I can just lay in the sun by the pool. He said he'll work on it.

I'll post numbers when I get them, probably in about 2 weeks or so.
love to all,
Dan

Resting After Cycle 2

I finished cycle 2 of bendamustin/revlimid last week and am now in my recovery week. We continued to progress, albeit not at the rate of the first cycle. Iggs dropped another 300 points, down to 3800 from 4100. M spike is at 2.6, down from 2.8. The 3 weeks of being on chemo is challenging and mostly exhausting, causing me to sleep more than I thought possible. Still making 3 to 5 visits a week to the clinic/hospital for blood checks and transfusions.

You may recall that I had to undergo radiation treatment last November due to an "impending" fracture of my left arm--the top of the humorous near the shoulder. Well, sometime in the last 6 weeks my arm broke, completely fracturing. Is that why it continued to hurt? Anyway, in my condition surgery is not an option so I've got the arm in a sling for the indeterminate future. As if I don't have enough issues! And I continue to be without driving privileges.

It seems that life has slowed to a crawl. The effects of the chemo and cancer combined with the treatment regime and transfusions leave little or no time for living. Susan is bound up in all of this and I feel so sorry for her as she has to take me everywhere as well as watch me as I struggle with the entirety of that I've been given to deal with. The girls are great support for both of us. Catherine checks in regularly and Julia drops by at least a couple of times each week as well as helps in getting me to appointments when she can.

The progress with the new drug is promising and has lifted our spirits a bit. We continue to be grateful for all the support of our friends and family.
Love,
Dan

A Stunning Start to 2012

Received results of last week's blood work. For the first time in at least 18 months, maybe longer, my IGGs have taken a hit. They dropped from 7700 to 4100. The best we've been able to accomplish since I was at MDAnderson was stability. I don't remember any reduction of disease levels since February 2010. I was so surprised that tears came to my eyes as the fight over the last 2 years seemed to be released, at least for a moment. Man, this has been a rough road and it seems that all we're looking for is the smallest progress to keep us going. The regime that has brought down the IGGs is a concoction Rifkin, my doc from MDA who is now at Sloan/Kettering, and a few of their colleagues. No set protocol, just a combination they thought might work: bendamustin, revlimid, dexamethasone, supplemented with numerous transfusions and neupogyn shots. Rifkin is reserved about the results, knowing how difficult my disease is, but nonetheless, we'll start cycle 2 on Monday.

I've become good friends with all the nurses at the clinic and the news of my progress burned through the halls today and I was hit with numerous good wishes from all the nurses who have taken care of me these past years and who have expressed much concern about my well being as we went from one trial to the next, hoping to see some progress.

Julia was with me when I got the news and she, too, showed emotion and relief. When we called Suz all she could say was Oh My God, OMG, OMG.

And so we continue forward. The next month will be spent primarily at the hospital/clinic since the drug combo hits my blood counts pretty hard and I'll need numerous transfusions. My situation is delicate and that's probably why Rifkin is guarded in his reaction. He has done a marvelous job working on the myeloma while at the same time preventing me from getting sick.

We are very grateful for all your support.
Peace love light
dan