Tuesday, December 30, 2008

"Good things might come to those who wait, but not for those who wait too late" Grover Washington Jr

I am told my second opinion was approved.  Sounds like a set up for a joke from the borsch belt. 

A second doctor tells me that not only is my cancer unpredictable, but so am I.

Butt a boom. Butt a bing.

Monday, December 29, 2008

"Tell me why it is hard to make arrangements with yourself" Neil Young

Communication breakdown,
It's always the same,
I'm having a nervous breakdown,
Drive me insane!
Led Zeppelin

What's new you've been asking?

You've heard it before. 

Nothing. Nada. Rien du tout. Bupkahs. 

Stillness is not my strength. 

Add to that a communication breakdown and it makes for a frustrating frozen moment. My insurance authorization for my appointment at UCSD was fumbled on the two yard line. In the fourth quarter. With one second left on the clock.

My scheduled appointment for a second opinion on a second transplant is suddenly on hold after office hours on the day before the appointment, waiting for a last minute paperwork reprieve that would allow me to keep the hard to get chance to see the double agent, Dr. Castro, who moves with grace in both the world of CLL and transplant medicine. A rare man in deed. I need his take on the advisability and timing and risky details of second dose of a stranger's stem cells. Or goosing my immune system with lenolidomide, the princely stepchild of thalidomide. That certainly would be entering unknown territory. Or other options I haven't even considered.

There is still a chance I will get the go ahead tomorrow.

In reality, nothing will be decided until the computer that controls an x-ray unit is used to slice through my gut, and using complex algorithms reconstructs my interior geometry. Moving nodes that are less than a half an inch across to begin with will be scanned for any change.  Not by inches, but by millimeters will my future be decided. That CT scan won't happen for another month.

In Vegas, I would be a card counter. I want all the edge I can get.  I want to know what is knowable. I want some to time to compute the odds and then make my move. 

I should still get the information and time I need. 

I am just not good at waiting.

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Tuesday, December 23, 2008

"And I've go one more silver dollar" The Allman Brothers

Well, I've got to run to keep from hiding,
And I'm bound to keep on riding.
And I've got one more silver dollar,
But I'm not gonna let them catch me, no,
Not gonna let em catch the midnight rider.

The Allman Brothers

I have completed 2 of 3 SAMs (self assessment modules) due by year's end. Let 's ignore the fact that I have had since January 05 to get started and I left them to this week. I have also finished all my medical reviews and CME (continuing medical  education) writing and test building yesterday.

Weird. With one hand I develop CME tests for others to take, and with the other I take tests someone like me developed. There must be some divine symmetry. Reminds me of Dr. Timothy Leary needing to take the psych tests he developed when he was jailed. Not the jailed part or the psychedelic part, just the ironic symmetry of the whole situation.

One more set of insurance forms to complete. When that monster is slayed I should be done with insurance paperwork for 3 months. I hope.

So I can relax and celebrate making it to this season. Enjoy the chance to read more non-medical stuff. And best of all be with family and friends.

Monday, December 22, 2008

"I'm gonna tell you how it's gonna be" Buddy Holly

But not today. I have a few more data points to collect, and then I will have the map to the hidden treasure of a salty and salubrious life. But mateys, you must cool your heels a spell, for I tells you there be treasure there for sure for those who be patient enough to solve the riddle.

But first the mundane before I go about the business of saving my life, and hopefully hacking my way through these mixed metaphors to blaze a path to health for others caught in the same storm. 

Sadly it seems that my paperwork expands in inverse relation to the time I have to get it done. I will push hard to get it mostly on its way by mail, fax or electrons in the next two days so I can write more real stuff, and spend time with my kids coming home for the holidays. 

Suffice it to say that I feel very well even if very fatigued, full of joy for making it to this season of miracles, and presently swamped with menial tasks. I wonder how I managed when I was practicing full time. I know that I slept less. As I've said before, having cancer can be a full time job.  But that's way better than be fired. I wouldn't mind if this job lasted another 40 years, though  I wish there wasn't so much busy work for the insurers and others.

Enough with the Scrooge redux. I am thrilled to my bone marrow to be at this keyboard.

Stay warm. Be happy. Enjoy every nano second. They are all so precious. This is truly is the most wonderful time of the year. Even in California, where, despite the palm trees,  it is going into the 30s tonight.

Merry Christmas. Happy Hanakah. G-d bless

Friday, December 19, 2008

"Now I wish I could write you a melody so plain That could hold you dear lady from going insane" Bob Dylan

That could ease you and cool you and cease the pain
Of your useless and pointless knowledge

Bob Dylan

The lecture I just reviewed on diabetes harbored no surprise attacks on my weakened immunity or my anti-silo proclivity.  Unlike my last medical review that started my ongoing battles with the CDC about the safety of the live herpes zoster vaccine, I have no bones to pick with the ADA (American Diabetic Association) as they dare not venture into my terra firma of white cells gone wild. I can handle their sober teachings on dying islet cells. The scope of their problem may be bigger and the ultimate toll far higher, but I am playing at the high stakes table. Let them argue their case at the penny slots. True, that is where the real profits come, but it just ain't the game I'm playing  this time around.

I was pleased to see the CLL gurus, Drs. Keating and Byrd, both well known to the bad to bone (and node) crowd,  admonishing us to NOT get the zoster vaccine in interviews and posts on the web. Good on em. I am bursting with pride to know I play a behind the scenes role in making that happen. But my work is not done.  

I will push in the new year to get the bug docs and the blood docs singing the same song.

Monday, December 15, 2008

" I can see clearly now" Johnny Nash

So here's the plan.

Repeat the CT scan in about 6 weeks. 

If Dr. Forman is  impressed by the change in the nodes, then it is time for chemo, likely FCR for 3 courses, followed by a BMB  and CT to check it did the job, then a repeat transplant, likely in the spring. Dr. F. is letting the donor know to be prepared.

If it shows no progression of the disease, Dr. Forman keeps me on a short leash. and if and when there is evidence of progression,  we start the above plan.

DLI is off the table. Too high a risk of aplastic anemia. That was a curve ball I was not expecting, but I must respect. FCR is also a non starter for the reasons I previously stated.

I will blog on the DLI  and this whole process again very soon.

In every sense of the words, I can live with this.

It poured rain on the drive to City of Hope. The sun was out by the time we hit home in Newport Beach.

Can you read my mood? More upbeat for sure. I can see clearly now.

"Waiting for the sun" The Doors

Any moment now. From the exam room.

Another thought. Maybe Dr Forman will say no time to discuss that today.

Then I make my 10 second elevator pitch. If I lose the graft or am not transplanted my prognosis is dismal.

Do you sense my mood?

Sunday, December 14, 2008

"Please understand I never had a secret chart to get me to the heart of this or any other matter" Leonard Cohen

Not much punch to this post. And certainly no punch line. Only the sober business of making choices.

These are my crib notes for tomorrow's appointment. Possibly the most important doctor's appointment in my short life so far. 

Or maybe not.

Dr. Forman Dec 15, 2008

Ask what he plans to do and shut up and listen:

If he recommends wait and see with a repeat CT and maybe BMB early in the new year then I must get across two points

1: Why not an urgent DLI?

As he is well aware, if I lose the graft or don’t have a second transplant my chances of living to 65 are negligible. I must make difficult choices, and not be guided by wishful thinking, but by the reality of my circumstances.

Without a new immune system, my brand of CLL is universally fatal. GVHD from a DLI can be too, but much less often.

When I relapse which odds are will be sooner rather than later, based on the medical literature for pts with 11q del and unmutated status, plus my personal disease history of quick growth when not getting treatment, I will then quite possibly be Fludara refractory with a very small chance of another CR (under 20% in most studies), so my likelihood of a second long remission are slim, and diminish with each subsequent treatment. More importantly my best chance for a cure with a second transplant is with a deep remission.

2: If CT or BMB do show any hint of relapse how seriously is he considering a second transplant?

If he is noncommittal, I argue that my indications are even more cogent for a second transplant soon than they were for my first transplant, as I have a lower disease burden, likely present access to the same well-matched donor, and my good health in a particularly nasty disease that definitely will reoccur without a new immune system.

If he recommends more FRC

Same argument. Even if I get a lengthy remission, which is very unlikely based on the literature with my 11q- and my unmutated status say 3 years, then what do I do? Also O’Brien and Keating did not recommend it, and the literature suggests once you have reached MRD- status, not much advantage in going further. I need to plan several moves ahead.  By doing more FCR now, I may be playing a card that I might need later to get into a complete remission for transplant if  the changes on the CT scan are not getting worse and I do remain in CR for a long period. I think this is not likely, but is possible.

     If he recommends a DLI

I need to ask if it doesn’t work, does that jeopardize the risk of a second transplant? What dose to start?

            If he recommends a second transplant,

Discuss finishing FRC first and what conditioning he plans.

Finally: Insurance forms, FU appointments and testing

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"Turn off your mind, relax and float downstream" The Beatles

More than anything, I need to stop everything, at least for a few hours. Reboot and the kick start my brain. Lots of foot to the mouth images.

Before tomorrow hits, I have medical records to summarize and collate for upcoming consults, expense reports to copy and total and fax for recent travels, and CME (continuing medical education) to document and  complete to keep my board certification active on both sides of the border.  I was behind in CME due a little thing called a transplant messing up my travel plans for the last half of this year. Now with my recent whirlwind of conferences I am over the bar. Rest assured this writer is certifiable, make that board certifiable in Canada and "the states".

Meanwhile pesky insurance companies (medical and disability and life) are writing carefully crafted letter demanding urgent and largely redundant paperwork from me and my doctors.

My writing sample and application for consultations of a different sort are overdue for the writer's conference in San Diego in February.  I can hear the consulting editor now: Not another disease of the month book please! All in all it gives me another chance to see how many more chainsaws I can juggled blindfolded.

Like I said, time to turn off my mind and reboot. This is not a healthy mindset. Instead I will head to the sand and the ocean. Life is beach.

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Saturday, December 13, 2008

"I'm leaving on a jet plane" John Denver

The Phoenix airport provides free internet and US Airways let me head home two hours early. It was a change not only in flight time, but also a change in airport from John Wayne to Long Beach. Thank you to Marty at customer service for her kindness. I was thus able to avoid a 4 hour wait at the airport.  Very sweet.

Now I on the plane with all the sneezing and coughing and infants in the recycled air. Talk about scary. I do have my N 95 mask on, so I guess I'm the one doing the scaring.

It's all about perspective. 

I was in the Phoenix desert sprawl to learn about a new gout drug. I kept asking questions about whether it might help with tumor lysis issues instead of allopurinol. Between that and my backpack with the American Hematology Society logo, do you think they might have thought I was a blood doctor (or patient?) sneaking into a rheumatology conference. Heck I always feel like I'm sneaking in.

Thursday, December 11, 2008

"He's as blind as he can be" The Beatles

Yesterday when I was home alone, I had a scintillating fortification scotoma. Pretty scary. 

What happened is that I lost vision in both eyes for about 2o minutes.  Actually a shimmering jagged arch drifting in the right half of my visual field. It was like I was staring through a phantasmorgical prism so that the words on the page were blurred and unreadable. The jagged edges make it look like the top of old fort or castle. Hence the name: Fortification scotoma. The fact that it was bilateral suggested it probably originated in the brain,  specifically the occipital lobes. Somewhere proximal to the optic chasm is not ruled out, but is less likely. Thank G-d I wasn't driving or operating heavy equipment. The picture above is pretty accurate.

I barely managed to call Patty to get home quick. We all know the numbers on the phone by their position, because I am not sure I could have deciphered them. By the time she got home to rescue me the bilateral light show was over. The thrills of the 60s without the drugs.

My diagnosis: An ophthalmic migraine. A migraine sans migraine. Just the aura. No headache that follows. Haven't the time for the pain. Not that usual in the over 50 crowd.

There I am treating myself again. When will I ever learn? Probably never.

The whole episode put a crimp in my writing.

I want to take a step back from the brink, and discuss the slow motion world of the wherefores and the whys but life just keeps happening.

Tuesday, December 9, 2008

"If I listened long enough to you" Tim Hardin

"If I gave you time to change my mind
I'd find a way just to leave the past behind
Knowing that you lied straight-faced while I cried
Still I'd look to find a reason to believe"

Tim Hardin

This post is pretty straight ahead medical. I will share some of my emotional and intellectual twisting in the wind later this week.

As you may recall we left me, our protagonist on a quest for more information.

When the experienced pathologist peered through his microscope at my bone marrow on the first of the month, when the hematology section of the lab went further and dug deeper using the fancy flow cytometry to search for one in 10,000 cancerous cells, they came up empty. No cancer. Nada! Rien de tout!

When they did my CT scan, the rad (the in term for radiologist), found rock solid stability in my cervical, axillary (armpits), inguinal, mediastinal (chest) nodes, BUT he discovered to our mutual dismay that my mesenteric (gut) nodes were "plumper".  True, I am trying to bulk up, but not nodally. Today I got a second opinion and had the digital files (x-ray on actual films are so 90s) reviewed by another rad. He found some growth not only in size, but also in number. Subtle. He called it suspicious. I call it bad news.

At ASH ( the 20,000 strong Hematology conference) I got a plethora of conflicting takes from the transplant and CLL gurus. More on my reflections on ASH later.

I met some wise doctors who were most generous with their time, and I asked very specific questions, about what matter most to me, that being me.

Question: Can CLL reoccur in the nodes with a clean marrow after transplant? 
Answer: Very rarely, OR " you betcha" especially with my risk factors, maybe a 1/4 of the time.

Question: Is the change in node size significant or are there benign causes for the fluctuation?
Answer: Maybe in the neck or groin, but you just don't see those changes in the gut OR they are still so small I wouldn't worry about it.

My best guess?  You must call them the way you see them, not the way you wish they were. Not much else would cause my nodes to swell. I assume it is the CLL, but I also think it is safe to wait 6 week to confirm with a follow up CT scan to be for sure for sure. There is much at stake. One CLL expert from Australia said I might be cured by the processes I have already been through. It was a minority opinion, but maybe he's right.

Question: Should I get a DLI (donor leucocyte infusion where I get donor white cells injected into my blood stream with no immunosuppression in a daring attempt to save my graft and knock out any residual cancer, but at a high risk of  GVHD or graft versus host disease)?
Answer: Most everyone said yes, but I better hurry. My doctor was not convinced as of Sunday, but he planned to get more opinions. I hope he's changed his mind.

Question: Should I complete the course of chemo with 3 more sets of FCR (the top chemo cocktail out there to treat CLL and the one that was heavily fortified for use in my pre-transplant preparation or conditioning)?
Answer: Finally a consensus: Don't do it. Turns out that a MRD- (minimal residual  disease negative) remission is just as predictive of good outcome no matter if the test is able to uncover only 1/1,000 cancer cells or 1/100.000. That would seem to suggest that striving for an even deeper remission once I've hit that sweet spot of being MRD-  by dousing me with more chemo wouldn't add much except more toxicity and immunosuppression. My doctor doesn't necessarily agree.

Here's my plan as of 12/8/2008 at 23:28:47. It could change 10 times in the next 10 days. Or ten seconds.

I want a DLI if possible, but it must be soon. If no DLI, then a second transplant now (now really means in 6-8 weeks in all probability if donor and insurance line up). I am also fine with waiting up to two months, but not longer and if the CT scan or bone marrow biopsy then shows any hint of a problem, cue the transplant music again. Details of that particular dance will be the thrust of another post. If I remain disease free, I just need close follow-up, every 90 days or so. That's a lot of rads (not the cool term for radiologists, but the hot term for absorbed cancer causing radiation energy), but I don't see much choice. You can't fight what you don't know

What I won't do is more chemo unless it is the first step of a two step process, with step two being transplant. Makes no sense to me.

But if I gave you time to change my mind....

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Saturday, December 6, 2008

"It won't be long" The Beatles

I am here at the hematology conference in San Francisco and up to my eyeballs in blood information.

I promise many posts next week.

Tuesday, December 2, 2008

"Get back, get back to where you once belonged" The Beatles

Or at least back up.

When I put my trust in you, when I count on you to be there for me without fail, and when I turn to you and all I get is a question mark, I am shaken to the core. I depend on you.

I have enough question marks in my life without my Apple hard drive showing me the computer equivalent of the finger: a folder with a question mark and nothing else. For now the problem is intermittent, but who need this tsuris (Yiddish for aggravation) so it it will be replaced before it gives out completely. And all is lost.

Hey, that's what I tried to do with my bone marrow which was giving me major tsuris. Swap it out before it's too late.

The hard drive swap will be much easier. And quicker. And is covered by the warranty.