Saturday, September 06, 2008

Then and now, Part 2 -- Five years later

Wednesday marked the fifth anniversary of my CLL diagnosis. I am now entering year six of a journey that, according to survival statistics, should last another two to nine years. At which point I will become permanently out of print. Crossed out by the Big Blue Pencil. Remaindered at the bookstore in the sky.

Unless, of course, I get lucky. Which, the statistics show, can also happen.

My feelings about chronic lymphocytic leukemia are a lot different today than they were five years ago. Then, it was a challenge that demanded my full attention: How can I get a grip on the unfathom
able to outwit the unthinkable? Now, the adrenaline response to diagnosis is gone. The war of attrition has set in. CLL is less of an imminent threat and more of a lethal annoyance.

This has led me
to conclude that, as much as I can, it’s time to get on with my life. In the words of that sage philosopher Doris Day, “Que sera, sera. Whatever will be, will be.”

Over the years I have learned what to expect. I know how the disease progresses, how drug resistance develops, how I respond to therapy, how clinical symptoms have impacted my life. I have seen the pace at which new therapies come along and I know that at the end of my CLL journey, barring something fairly miraculous, there will be a transplant of some kind. And that it will probably either cure me or kill me, and that nothing I do can control the outcome with certainty.

I am along for the ride. Over time I have come to accept my situation, and very little good can be said about it. CLL is a bitch. But I am getting used to it. As the
days go by and the crises come and go, it feels less like a roller coaster and more like a bumpy road. And so the experience has taken on a more even feel. It’s not new anymore. It’s just that thing you do, that thing that happens to you.

I used to look for silver linings, and I suppose there have been some. For example, getting to know other people affected by CLL has brought out my empathetic side, made me more comfortable speaking the language of emotion and acknowledging pain and loss. I learned through this blog and online forums that I could turn my experiences into something that might be of help to others. When things have gotten bad for me personally, I have found an inner strength I didn’t know was there, an ability to hold things together and st
ay focused and not freak out. You could say that I have grown as a person. The shorter my life threatens to become, the fuller it is.

But this is a war of attrition, and that takes something out of you. The silver linings usually pale in comparison to the clouds. There is a slow drain of resources:
emotional, financial, and in the form of dreams deferred and plans altered. Five years ago, CLL had an air of unreality about it; now it has been around long enough to have impacted almost everything in my life. It is impossible to deny.

After five years, I have also learned that knowledge is imperfect. For example, in the time since my diagnosis, FISH testing has become part of the diagnostic and prognostic workup.
But the test looks for just a few things, and many lay hidden, unseen players in the game. There is a lot that the experts still don’t know about CLL, and the learning curve requires patience; the first chromosomal abnormality (Trisomy 12) was discovered the year I graduated from college, 1979. And in the words of Dr. Terry Hamblin, “We still do not know what it means.”

On a more practical level, I have learned that knowledge can only take you so far. Understanding the tests and treatments and all that is essential. But how your disease progresses, how it reacts to therapy, these do not always follow the rat
her incomplete book. CLL is notoriously idiosyncratic, and there’s a lot of trial and error when it comes to managing it. There is no way to know for whom the bell curve tolls. And so I have learned to expect the unexpected.

Over time, I have also come to see that knowledge only takes you so far, for reasons that have nothing to do with medicine. The quality of the CLL experience is something that evolves in part from your reaction to it. I am talking about the emotional and spiritual component, what the clouds and their silver linings, the thunder and lightning, does inside of you. There’s who you are going into this and who you become.

In my case, I was afraid of death and am now less afraid. I’m not happy about it, mind you. But I’ve gotten used to the prospect.

I have also found some balance. A CLL diagnosis comes as a shock, and the ongoing experiences of getting test results, visiting doctors, being treated an
d then relapsing, all these things can create a life lived on a medical treadmill. This was the case with me, and then I realized that when the treadmill slowed, the sun was still rising and shining on a planet that contains more than B lymphocytes. The beauty in life began to reassert itself.

For a time the world is CLL, and then it becomes the world again.

Knowledge only takes you so far. The whispering in your soul takes you the
rest of the way. This is where CLL meets the cosmos. Where a terrible burden meets its context. Where the stars float and you do, too, set loose by the unbearable lightness of being.

CLL is nothing more than one possible end to your story.

So keep writing.


Anonymous said...

David, we've emailed before, so you know my story. Your readers don't. But I was stage IV when diagnosed in 1996, and was put into remission with fludarabine. The remission lasted about a year, though I didn't go back to the doctor for another two years (I was being stubborn.) By the time I relapsed into stage IV again, they had developed rituxin. That put me into a remission which has lasted almost ten years now, still going strong, and I'm an age-group national-class bicycle time trialist. The moral is: despite statistics, every person is his own unique little universe and you just don't know what might happen. The next drug they come up with might be the one that does the trick for certain people. My prescription: give up meat, get lots of sleep, exercise as strenuously as you can (and get fitter over time), drink wine, take vitamin B12 pills (I take 1500 mcg per day.)

It can't hurt!


Anonymous said...

As you well is a journey, and no one can ever predict what's around the corner. When I was little, my mother told me to always be sure that I wore clean underwear in case i was taken to the hospital as the victim of an accident. The same applies to life with prepared and do your best, but, by all means, live Life, as you never know what's around the corner.


Anonymous said...

I disagree with your post in one sense: one cannot know the path CLL will take, and you might very well be gone in a few days. There may not be ANY options to try. Look at Chaya's husband.

I've had CLL for 10 years, and the first eight were pretty uneventful, though Dr. Kipps always had a frown and a sad face when he say me, perhaps seeing a dead patient not too far away.

Now, things are accelerating after a two-year remission, going so fast I wondered if the CLL cells were siphoning off every bit of energy my body was taking in.

So, we can't relax and we can't coast. To coast is to die. CLL looks for any weakness to exploit, and IT NEVER SLEEPS.

If I wrote of my journey, I'd call it 'the long goodbye'. I know that is usually Alzheimer's, but it fits CLL as well.


Anonymous said...


If you aren't vigilent you may, indeed, allow the CLL to gain more ground, but if you look at your remaining life as a "long goodbye", I fear that you will miss out on so much...don't forget you can still get run over by a truck on your way to the grocery store, but that shouldn't prevent you from going there.


Carl said...

Happy cancerversary, David! Five years is a milestone, indeed.

A beautiful post.


Anonymous said...

This might sound facile and naive, but ... I think there is great value sometimes in refusing to accept what appears to be the inevitable. I have read that it is not uncommon for an adult, when he realizes that he is totally lost in the wilderness, to lie down, make himself comfortable (with a pillow of leaves, for example) and die quickly, for no good biological reason. They accept the inevitable and give up. Others will trek on beyond normal human limits, often in extreme weather conditions. Some don't make it, but some do. (See the book "Deep Survival" - I recommend it to everyone.)

I have never accepted the concept of ageing for myself. And at age 62 I look about 40 and am fitter than 99% of the American population, regardless of age. At age 50, when diagnosed with CLL and given an estimate of 3-5 years left, I refused to accept that CLL would take me down. It hasn't, and I'm ten years into a second remission.

You just cannot underestimate the power of the will and the mind when it comes to disease. It is probably more important than any medicine they can give you.


David Arenson said...

The point about will and mind is well-taken. On a gut level I have no intention of giving up or giving in. But my attitude is tempered by what happened to my friend PC Venkat, as well as to others I have known. PC's mind was strong and he had will in abundance. I have never known anyone more determined. And yet, in the last analysis, his fate was out of his control. So while I think we can do great things if we put our heart and soul into it -- indeed, there is some medical evidence to back this up -- we cannot cheat Fate when our time has come.

Anonymous said...

Yes, but it's worthwhile to keep in mind that in PC's case he didn't succumb to a disease process. He was killed by a medical process, and that can be (and too often is) as deadly as a bullet.


Anonymous said...

It's important to realize that we are all dying. Dr. Keating is dying. Dr. Kipps is dying. You are dying. I am dying. We all are.

(That is the lesson CLL has given me. Even if there was a miracle cure, I'd still be facing heart disease, or diabetes, or some other serious disease, eventually. We are all on that path towards the end, try as we might not to get there!)

I don't question anyone's decision to treat or not to treat; to use one treatment over another; or how aggressively to seek more treatment.

I read an article in the Wall Street Journal a while back discussing cancer patients who felt like failures because they supposedly didn't have a positive enough attitude. Friends and relatives would come by and tell them that staying positive would help them live, and giving into 'negative' thoughts would quickly lead to death.

Those who were losing the fight were sometimes angry at themselves, feeling they were failures because they didn't try hard enough.

I regret that people feel that way. As they say, one doesn't not lose the fight to cancer, because cancer can't win. Once the patient dies, the cancer dies as well. Where is the victory for cancer? Nowhere.

(P.S. I like it so much that you haven't posted about politics. As entertained as you might be, I find it annoying, to be honest. Some of your past posts on things such as AIHA are illuminating and very helpful to others. Your left-wing rants are not. They are just divisive.

Joyce in Seabrook, Texas said...

David, I just found your blog and am so thankful for all the great information you have posted and are continuing to share.

In mid August 2008, due to being extremely tired and short of breath, I went to the doctor for tests and discovered I had this "thing" called CLL. Inspite of my age (58), I just didn't think it could be the aging process as so many of my "well-meaning friends and family" made me believe.

As we went through the initial series of blood work, Hurricane Ike struck our area (Sept 12) and put things on hold for awhile. About 10 days ago, I found I have AIHA, which apparently has the doctor more worried than the CLL at this time. Seems as though it is rapidly progressing going from a hemoglobin count of 15.9, according to a blood test last year, to below 10.

First stage of treatment is 100mg of Predisone daily, which I am on currently. It has brought my count up to 10.9 in a matter of one week and tomorrow I will be tested again. I do feel much better with the steroids, but I know they can have some serious side-effects.

Just wanted to say that I will be looking forward to reading your updates as I move forward in my journey as well.

My younger sister passed away 5 years ago at the age of 49. She died from a blood clot and without any warning. Strange as it may seem, 5 years to the day she died, it was as though she was "telling" me to stop waiting and I became convinced something was wrong. That was the day I left my office, went straight to my doctor and began a series of tests. I truly believe it was her way of watching over me. I love you sis!

I am going to be well for her and for her family. She would want it that way!

I look forward to reading your posts, looking at your great photos and hearing of ALL OUR SUCCESSES! I think the luxury of CLL is that it gives us time to prepare ourselves for the "ultimate journey" in a way other's may not have. But, on the other hand, it gives us a chance to live life to the fullest and that is what I intend to do a better job of doing!

David Arenson said...

Thank you, Joyce. I'm glad the blog has been of help. You have a great positive attitude that will serve you well as you cope with CLL. The AIHA is indeed more nasty in some ways and I have had a fair amount of experience with it, so I hope there is some useful information here.

All the best,


chuck twombly said...

Hi David,
I have enjoyed your blog for months. It has made me look closer at my numbers. I just finished 6 months of rituxin/fludaribin at Mass General in Boston with Dr. Takvoran and don't have to go back for a blood test /catscan until March. My dianosis of CLL came 2 years ago after my ear plugged, my neck swelled, and my whites started to rise. Keep writing, you are giving hope and understanding to more than you may know.
Chuck Twombly

David Arenson said...


I'm glad the blog has been of help. That's why I keep doing it.

Good luck in your CLL journey. I hope you get an excellent remission from the RF.