Saturday, May 23, 2009

Beyond living "la vida leuko"

The house is a mess. I don't have time for much of anything except what absolutely must be done, which explains why I'm not blogging a lot lately. Marilyn and I are living our lives inside a turbo-charged hamster wheel consisting of treatment for CLL; renovating the house and paying for renovation of the house so that we can sell it; and keeping our business ramped up to pay for as much of the above without going into even more enormous debt than we already find ourselves in (Thank you, Bernie Madoff! May you live to be a hundred -- in jail, of course).

It’s a three-ring circus with lots of elephants plotzing around. Sometimes the building shakes. And yet this morning, as I poured a cup of coffee into my Far Side mug in the beautiful new kitchen I won’t own much longer (we hope), I felt a sense of calm and optimism that I had almost forgotten had once been part of my life.

Call it a flashback to pre-CLL, when the mere weight of the world hung around my shoulders -- as opposed to the mere weight of the world plus the prospect of death and how to avoid the latter for as long as possible.

Here I stood in a half-done house, enjoying what for us Arizonans is a delicious morning of overcast, drizzly, and cool Memorial Day weekend weather. I could look through the mess around me and see that there was a future somewhere. A move sort of impending, an adventure even, a next step that despite being in large part about CLL is not all about CLL.

The CLL part, as I have alluded to in this blog many times, has much to do with the health insurance I have. Thank God I have it, but it’s Arizona-based only and it’s restrictive and won’t pay for a stem cell transplant when and if the time comes. So unless something miraculous finally happens in Washington requiring insurers to cover people with pre-existing conditions, I will have to follow the four winds to a place where there is a high-risk insurance pool that will take me. Let’s see what moves faster -- health care reform or the sale of this house. I am hoping for both by the end of the year.

The non-CLL part has something to do with getting one’s life back in order. A lot of things have been let slide around here since I was diagnosed in 2003. Plans and projects shelved, everything deferred to matters of disease and, gradually, econ
omics. Spin it as much as I like, it’s basically been a depressing, unhappy time. After almost six years, I have decided that you can’t truly make a silk purse out of the CLL sow’s ear. Perhaps the mistake is in trying too hard.

Now things are changing. There are physical signs of it wherever I look. And maybe as time goes on I have developed less propensity to worry. Maybe I’m sick of living la vida leuko. Maybe standing in a new kitchen amid old debris symbolizes the ability to get things done, to get moving, to somehow take a powerful step beyond the inertia
that followed the gut-punch of a cancer diagnosis.

Who knows, maybe I’m just responding to negative ions in the atmosphere. I’m not expecting the CLL road to get easier. I am just hoping that my ride along it -- Marilyn’s and mine -- might be somehow less bumpy, perhaps more focused on the scenery. It’s a beautiful world, really. Sedona is a beautiful place, but I have lived in beautiful places before.

Another one, I hope, awaits. Physical, metaphorical, lyrical. I’ll take what I can get.

Perhaps, I hope, I have taken a step and am just a little b
it there already.


Anonymous said...

Did the plasma + ritoxic work?

David Arenson said...

I will report on R-FFP in some detail when I have the proverbial time -- in the interim, suffice to say, based upon my anecdotal evidence, it was surprisingly ineffective.

Anonymous said...

What makes you think that Obamacare will pay for a extremely expensive procedure that has a high mortality rate and poor survival? Transplants will be one of the first things to go.

ANON-2 said...

Dear Anonymous:

Do you ever have anything kind or compassionate to say to a fellow CLL sufferer? Does your response always have to be pushing political hot buttons?

David Arenson said...

I've learned to ignore "Anonymous." He has a Pavlovian response to anything having to do with health care reform. That's his reality, but it's not the only one in the CLL journey, as I think the rest of us know.

Anonymous said...

And perhaps, our mantra to the new CLLer's on the Forum, just hit home with you. Finding the new rhythm of your life. A different dance with a previously unknown band. I think you are now an official "groupie" of this new act. Congratulations, David......and so, life begins again. I love it. Beautiful writing. Thank you.

Jenny Lou Park

Anonymous said...

Best wishes for the renovations which are trying at the best of times and for the sale of your property.
Be proud of yourself that you maintain this blog and educate and inform all of us to make of it what we will. Keep on living and giving - just because you have a diagnosis of CLL doesn't guarantee your life will end sooner than the "healthier" person that lives across the street from you - none of us know what lies around the corner for us so, as I guess you do, live for what you have now. Now is all we will ever have.

Comment for "Anonymous": people do survive Transplants - negativity gets us nowhere.

Keep writing (when you have the time) David.

Dennis Pyritz, RN said...

Great blog! I am a CLL survivor also. I have added you to my blogroll - Cancer Blog Links at
Take care, dennis

Anonymous said...

Of course I have a lot of positive things to say about some aspects of CLL!

I love the current healthcare system minus Obama. It offers cutting edge therapies to most.

Look at the UK or other countries with single-payer government healthcare. Many cutting edge therapies are not offered because they are not 'cost effective'. NICE in the UK bases these decisions on old data using the sickest patients. They live longer, according to NICE, but not long enough, and, you know, they are old, so why live???

I do think that the FDA in this country is a bunch of loser bureaucrats who cover their rear-ends first instead of looking out for cancer patients.

Witness the lame and unbelievable recommendation not to approve HuMax-CD20.

Dennis Pyritz, RN said...

I am glad I found your site. You are a great writer. In fact I used most of this post as part of my weekly guest post at You can find it at
I included two links to your site as well as a link to this post. Thanks for sharing with all of us in the cancer community.

Ronni Gordon said...

I am an AMLer who has stopped in for a visit. Many of the issues are the same, such as getting on with life. I was diagnosed in 2003 and had my first stem cell transplant. Relapsed twice and now am four months out of my fourth transplant which I hope has done the trick! I'm sorry your insurance won't pay if you need it. I hope you can find some insurance that does. I like your phrase "living outside la vida leuko." Love your writing.

Anonymous said...

Except, to be grammatically correct in Spanish, it should be "la vida leuka," which has a nicer ring anyway.

"Vete a la chingada, CLL."


David Arenson said...

But "leuko" sounds more like "loco," which is more apt in the context of my post, though you are correct that it's less correct in Spanish.

Your quote there, now that I can agree with.