It's Back!

Dave’s Great Adventure
Book 4, Chapter 1, Verse 4
May 29, 2011


“It’s back.”

When you have a malignancy of any kind, breast, colon, prostate, or whatever, and you’ve gone through a bunch of treatments with chemotherapy and surgery or radiation and all the other things that go along with these kinds of treatments, it’s a wonderful thing to be told you’re in remission. It makes all the torture and misery of the treatments worthwhile. You start to feel like things are back to normal, that you don’t need to worry about dying too soon or having to go through more treatments. But then, at some point, perhaps quite unexpectedly, you’re told, “It’s back.”

That’s probably one of the most economical ways to give really bad news. A couple of words, eight letters, that tell you the thing you’ve been fearing, that unseen disease in your body, wants to take over again. And wants to take you from everything and everyone you know.

I’ve known from the very beginning, from when I was first diagnosed with leukemia, that it was, and is, incurable. Yet, like every other person with any kind of cancer, I want to believe that I’m going to be the exception to that “incurable” rule and that I’m going to survive, I’m going to outlive this disease. After each of my courses of chemotherapy I’ve been told that I was in complete remission. I focus on the word “complete” and try to translate that into “cured.” I know, intellectually, that I’m not cured, but I want to believe that I am.

After each round of chemotherapy, after I get over the side effects and regain my strength, I start living a fairly normal life. It’s easy to forget that I have an incurable disease lurking in my body. I actually sort of forget about it, or think that it’s just been a bad dream, and that it’s not real. But at some point I get the news…

“It’s back.”

…and Kathy and I look at each other and are fairly roughly thrust back into the reality that I have an incurable, lethal disease. And we know that my future holds more treatments and that with each treatment I undergo, I have fewer and fewer options left for the “next time.”

I’ve had three different courses of chemotherapy in the last nine years. I’m very lucky, actually, that there have been these options for me as this wasn’t the case in the past. And with each course of chemotherapy, each of which was experimental, I’ve been put into a complete remission. And each time I’ve been thrilled with the news. But each time I’ve eventually heard the words, “It’s back.” It took a year the first time, eighteen months the second time.

My third course of chemotherapy was my longest and most intense, at six months long and including four different drugs. A year out from the completion of my chemotherapy I still was in complete remission. I had a bone marrow biopsy done about that time and they couldn’t any trace of the disease even with a “molecular probe.” Now, that was particularly good news as I’ve heard of folks like me who have gone through similar courses of chemotherapy and then been found to have a negative molecular probe, and some of them have been alive and free of disease many years, even a decade later. I thought that would be me, too. Later, my doc even told me that with this finding there were three chances out of four that I’d be in remission for up to ten years!

“It’s back.”

I heard those words again just days after I had been told I might be in remission for up to ten years, in a particularly cruel sequence of events. I suppose I was just that one person in four to whom the statistics were unkind. It has to happen to somebody or there wouldn’t be any odds to try to beat.

My disease actually reappeared over a year ago but I’ve felt so relatively normal during that time that I’ve continued to train with the wonderful folks from The Leukemia and Lymphoma Society’s Team In Training and, since I recovered from my last course of chemotherapy, I’ve completed eight half marathons, even as my disease slowly grew within my body. And soon, within a week, I’ll do my ninth. And then I’ll leave my training schedule behind and start another task and schedule, the schedule that our lives revolve around when I’m undergoing chemotherapy. And that schedule does, in fact, rule our lives.

I don’t know yet what that schedule will be. I have some appointments coming up in June to see my local oncologist and to get some more blood tests, but I won’t know with any certainty what the future holds until we see my doc at M. D. Anderson in Houston. I’ve gotten my appointment with him moved up to early July and that’s when we’ll hear what he thinks we should do. As one of the nation’s preeminent specialists, specifically in my form of leukemia, I have great respect for his opinions.

In the last year or so he has dropped hints about what we might consider doing if/when I relapsed. I believe he’s going to want to treat me with a combination of two new drugs, Revlimid and Hu-Max. (I won’t go into too much detail about these drugs until I know for sure that we’ll actually be using them, even though our friend Steve out in Englewood, Colorado loves technical details) but I will mention that if we use this particular combination, I’ll be taking a pill form of chemotherapy 21 days a month (the Revlimid) in combination with intermittent IV infusions of the Hu-Max, which is an artificial antibody against the leukemia cells. The course of therapy lasts up to forty weeks. Using a pill form of a drug will certainly be convenient, if we end up doing this particular protocol.

But I have to tell you, I’m as worried about the course of my disease and the side effects of the drugs as I have been in a long time. These drugs, and particularly the Revlimid, can induce some particularly nasty side effects. And the incidence of inducing complete remission really isn’t all that high. I’ve seen 9% reported in some early studies after forty weeks of treatment. And the logical question that comes to my mind is, “Well, if I’m not in complete remission after those forty weeks…well…, then what?”

But I’m getting way ahead of this. I tend to be a planner and a worrier and should learn to wait and see what actually happens, but that’s hard for me.

Since I don’t have any more details to pass on at this time I want to begin closing by thanking all of you for being so generous in helping me with my San Diego fund raising drive. I’m not looking for donations any more, as I’m well over my goal, but please take a moment to look again at my fund drive page and see what you guys did. You are all awesome. Thanks so much.
http://pages.teamintraining.org/ntxok/rnr11/deckberg
I have failed to thank each of you individually so far, but each of you WILL hear from me.

I’ll close by passing on a bit of good news. About a year and a half ago, or so, I had an echocardiogram which seemed to show that my heart was failing and that I would soon need open heart surgery to repair my mitral valve. I wondered how that could be, as I was feeling well and, in fact, had recently completed a couple of half marathons. Well, after having follow-up echocardiograms in three months, six months and then again in another six months, well…, everything is described as “stable” and there is no longer any talk of needing surgery any time soon. At least that part is doing well.

I’ll be back if there are any significant changes or after I go to Houston and find that we have a plan. Until then, thank you again for all your help with my fund drive and thanks for helping the researchers who are looking for better treatments for me and so very many people like me. As I’ve told many folks at many different meetings, my only hope of outliving this disease is for some researcher, somewhere, to find a cure in my lifetime.

Bye now,

Dave

www.adventureswithleukemia.blogspot.com

PS: After our armed forces recently “removed” the person responsible for the mass murder of 3,000 of our fellow citizens, I am reminded of the quote, usually attributed to George Orwell, which goes:

“We sleep soundly in our beds because rough men stand ready in the night to visit violence on those who would do us harm."
Please take a moment this Memorial Day to remember our fellow countrymen, these “rough men” (and women, too), the many, many thousands of them, who have died in the service of our country.

Dave's Great Adventure Returns

Dave's Great Adventure
Book 4, Chapter 1, Verse 3

I know it's been a long time since I've sent out an update to Dave's Great Adventure, to the great relief of many of you, I'm sure. But unfortunately I'm going to have to resurrect this long-running drama in the very near future as things are starting to change more rapidly than I'd hoped. More of "Book Four" looms in front of me.

Now, I have tried to get some updates out in the past 18 months or so, and have actually started composing a few but I just couldn't finish them. It wasn't that there was nothing to report, as many things of some import have happened, but the basis of the DGA series, my leukemia, though relapsing, was doing so very slowly and undramatically...until this week. So I'll have to get things going again, in many ways.

What has happened is that my white blood cell counts have more than doubled over the last three months. Typically, if a leukemia patient's white blood cell counts double in six months to a year, that's considered worrisome. My counts did so in a far shorter time. That may indicate a return of a more aggressive disease. We shall see. I am awaiting some calls from my doctors as to what we're going to be doing and when we might do it. I presume Kathy and I will be traveling back to Houston, to the M. D. Anderson Cancer Center and I suspect that more chemotherapy of some type will happen much sooner than later.

But that's not the immediate reason I've gotten in contact with you again. I don't have enough details on what's going to happen to really fill you in. What I really need from you right now is your assistance, if you can me reach a goal I need to reach very soon.

During my current remission I have been fortunate to be able to participate in the Leukemia and Lymphoma Society's Team In Training. Most of you know that I have gotten involved in several endurance events, which I'm very pleased to say I have been able to complete. In the last two years since I completed my most recent chemotherapy treatments, I have finished eight half marathon events. I find that quite amazing, as before I had chemotherapy, I had never done even one, and never thought I'd ever do even one. Many of you have helped me out with some fundraising which I've done in connection with a few of these events, as well.

I am going to try to complete ONE MORE half marathon before I start any therapy and am scheduled to participate in the Rock and Roll Marathon event in San Diego in just over three weeks. I have pledged to raise some more funds for the LLS and have just until May 24th to do so. I haven't been very aggressive in my fund raising this time as I have asked some of you for your help several times over the last few years, so I'm a bit late in getting this going (though I have reached out to some of you, and many of you have already helped out; thanks for your help!).

But, if you're able to do so, I would greatly appreciate your taking the time to read my story at the link below:

http://pages.teamintraining.org/ntxok/rnr11/deckberg

If you're able to make a donation to my fund drive, I'd be very grateful as well. This will be MY LAST fund raising event for quite some time, as I fully expect to be under treatment again before the end of the summer. That's going to put a stop to my distance event training.

As I find out what's awaiting me on the treatment front, I'll be back in touch with an update that doesn't include a request for a donation. I should know something fairly soon.

Thanks for any help you're able to provide. Any funds I collect on behalf of the Leukemia and Lymphoma Society will go to help patients with these diseases and to further research in to finding cure. I personally appreciate what you have done for me and so many folks like me in the past.

I'll be back soon with an update as to what sort of experimental chemotherapy I'll be doing this time. I know it'll have to be something experimental, as there is no standard therapy for someone like me who has now relapsed three times after being treated for chronic lymphocytic leukemia. Wish me luck! Prayers are appreciated as well.

Bye for now. I'll be back again soon.

Dave