I have become friendly with the people who run the blood lab here in town. They are used to my long list of tests, which are kept in a fat plastic sleeve in the “standing order” file. At various times Dr. Belle, who is two hours away in Scottsdale, has faxed them lists of tests. Laid side by side, these faxed papers looks something like a menu out of a Chinese restaurant. When I go in -- which was once a week until recently, now it’s twice a month -- I tell the people in the lab which tests to run. Dr. Belle gives me updated instructions and also doesn’t mind if I add one on my own if it’s something I’m curious about. The tests are all stat, with a copy to patient. I go in the morning, I get the results in the afternoon.
When I went in on Dec. 31, my red counts were noticeably up from the previous time, which was a nice way to ring in the new year. It made sense: I’d had my chemo, it was still working in my system; hemolysis had ended some time ago and continued progress was logical. It fit the picture of how these things are supposed to work.
Then, on January 11, my red counts were noticeably down, virtually identical to where they’d been on Dec. 19. Dr. Terry Hamblin is forever advising us patients that one cannot determine a trend in one blood test; anomalies happen, spikes occur, labs can have a bad day. You need to look at three in a row to see if something is really happening.
All that is nicely rational, but if you have been in the grip of severe hemolysis, your animal brain starts lurking just below the surface, alert to any sign of the return of the AIHA beast. Not that I had been noticing orange urine or pounding in my ears, but in the initial stages hemolysis can be gentle enough to fool you. Having relapsed twice, I am a little paranoid about it happening again.
So when I went into the lab last Wednesday, I knew I was going to learn something important: either things were going up, or they were going down.
The tests were “just” a CBC and LDH, which occasioned much mirth on the part of the techs, who have drawn as many as seven tubes from me on occasion. The CBC, of course, indicates how well the reds are doing, as well as the lymphocytes (we don’t want those to do well) and the platelets. The LDH measures cellular debris, and a high amount means there is hemolysis afoot. (During the height of my hemolytic crisis in October, my LDH was twice normal.)
So they drew the blood and I went about my business, which included any number of errands before returning to the lab that afternoon to get the results. At every stop -- bank, recycling center, post office, thrift store donation center, supermarket -- I was thinking less about the task at hand than I was about the results getting closer. The blood lab was my last stop; it was important to get the other errands done while I could still focus, in my ignorance of the results, on doing them.
When I walked back into the lab to get the envelope containing the single folded sheet with the numbers that might make or break me, I was reminded of the Oscars. “The envelope please . . .” Would I be winner or a loser?
I also thought of Johnny Carson, whose old Carnac routine -- holding an envelope to his head and reading the punch line of a joke, after which he would open the envelope and read the set-up -- appealed to my somewhat black humor about the wiles of the cosmos. Would the joke be on me today?
The envelope with my name on it was pinned to the bulletin board; the tech unpinned it and handed it to me and told me to have a nice day. Usually I read the results as I walk down the hallway leading to the exit, but today I decided I couldn’t walk and read at the same time. (God knows how I would have made it out of there had I also been chewing gum.) I needed to be seated; I would sit in the car.
And that’s where I got the news: We have a winner!
Not only were my fears unfounded, things looked a lot better than expected: My hemoglobin was 13.2, the highest it has been in more than a year. Hematocrit was 36.9, RBC 3.81, LDH normal, platelets a respectable 168. Even the lymphocytes were still milling around in a stable fashion at 22,000, which for me is low.
So, with the anxiety gone, I felt like dancing. Which is hard to do in a Prius.
It was just another day with CLL, of course. We’ve all been there: sometimes there is bad news and sometimes there is good news. The waiting and the worrying are all part of the “new normal.” As is often the case, my day was a mix of the mundane and the momentous. No wonder it often ends with wine.
Well, the results are in from the R+CVP, which became R+CP after my fingers started to tingle and my vision started to blur . . .
The overriding goal of stopping the severe hemolysis, which in October had taken me on a trip that was a little too close to death’s door for comfort, was accomplished. As readers will recall, this hemolysis, or destruction of red blood cells, was caused by autoimmune hemolytic anemia, or AIHA. That condition is a result of my immune system having deteriorated into some kind of Keystone Cops routine thanks to all those CLL cells sending out silly messages.
My hemoglobin recovered from 6.7 to around 12, where it has stayed for the past six weeks. Hematocrit is in the mid-30s. Overall red blood count is in the 3.5 range. While none of these qualify as a return to normal, they do represent enough of a rebound that I feel pretty energetic. My body seems to have adapted to this “new normal” in my red counts, rendering me as active as I used to be, more or less. (It’s not like I ran marathons.) Now, if I were suddenly to find myself in the normal range, I’d probably feel that much more energy, but at this point it could be said that I don’t know what I’m missing. And given how bad things had gotten -- imagine being unable to bend over to put a dish in the dishwasher -- things are “normal” now by comparison.
The other pretty big success in the treatment was the reduction of lymph nodes. The swelling in my neck and under my arms is, quite simply, gone. My spleen is so petite that, if it were not for something of a pot belly and a little gender issue, I could compete in the Miss America contest. The only holdout nodes I detect are in the abdominal area, which are often the hardest to get rid of, especially in an 11q-deleted patient like me. However, even the mass of nodes on my left side (the “abominable lymph node”) is well reduced, not too noticeable, and no longer painful.
On the downside, two things didn’t work as well as I’d hoped:
One, the absolute lymphocyte count bottomed out in the low 20s, which means that I have a good number of CLL cells resistant to Rituxan and cyclophosphamide. (And god knows what else, but I’d prefer not to think about it.) Fortunately, the count has been stable for the past couple of months.
Two, I never converted to Coombs negativity, which was my not-so-secret desire in all this. Such a conversion would presage a longer remission from the AIHA. However, as Dr. Clive Zent of the Mayo Clinic pointed out to me, the goal of treatment is to control the hemolysis and not subject the patient to any more chemo toxicity than necessary. My hem/onc felt that after three cycles of R+C(V)P, we had accomplished that basic goal and were showing no signs of improving on things any further. I agreed, and that regimen will be held in reserve if I should begin another severe relapse. It is living with that possibility that qualifies as the newest “new normal” that I have to adapt to. As Dr. Zent also pointed out, patients with AIHA seldom get rid of it. There is nothing I’d rather be rid of more, of course. Wrapping my head around the idea that it could return after such a “big” treatment is taking some doing. But experience teaches, and having a hem/onc who recognizes the severity of the problem also helps. So I am doubly vigilant, and that much more prepared, at any sign of trouble. (The monthly CBC has now become bi-weekly, for example.)
For now, I am continuing on steroids, currently at 12 mg of methylprednisolone daily, with the goal to go even lower. We will add in some periodic low-dose Rituxan, based on my experience with it last spring, in which it was able to control hemolysis when I was off the steroids. IVIg, another anti-hemolysis tool, will also be in the works as my Immunoglobulin G has now fallen below 300 for the first time. I am amazed that I have not come down with an infection, but perhaps I have more reserve immunity than the numbers would indicate. And we have been careful. Marilyn caught a bad cold and wore a surgical mask around the house while she had it, and she washed her hands constantly. Alas, no smooching, and I owe her a big one for taking such pains to keep me from getting sick. (Of course, we patients owe our caregivers not just a kiss but the world.)
As to the tingling fingers (peripheral neuropathy), they are slowly returning to normal. The blurred vision resolved after a few weeks. All this means I can use vincristine again in the future, albeit in very small doses. Had I been able to tolerate it better, it is possible I would have gotten a deeper and better remission, but those are the breaks in chemoland.
In the meantime, since I am in remission, I am trying to enjoy that aspect of it. The “new normal” has its rewards. This is a comparative “rest period” as opposed to the manic “what do we do/time to see another doctor/yes, I have good veins and you can use any one you want” period that accompanied my AIHA backslide in October.
Ultimately, though, my continuing AIHA saga, not to mention the rock-bottom immunoglobulins, illustrates that my immune system is pretty much shot. A stem cell transplant is becoming all the more necessary, and the time frame for it is no longer “some day” but more likely within the next two to three years. Investigating that course is now front and center in my ongoing CLL education.
As Roseanne Rosannadanna said, “It’s always something.”
You can look in the phone book. You can sign on to one of those bogus websites where doctors pay to have themselves recommended, or where you pay to be provided with information that you can find by yourself for free. You can look in a magazine where local doctors vote each other “top doctor.” All of these choices are inherently unreliable, of course, and provide little or no meaningful system for filtering the wheat from the chaff.
States do have medical boards of examiners that keep track of complaints and malpractice judgments against doctors. This tells you when a doctor screws up in a big way but it tells you little else.
What about a doctor’s bedside manner? Punctuality? Ability to communicate? General quality of care?
For answers to those questions, patients have long relied on word of mouth. This is subjective, of course. My neighbor, who has battled and defeated breast cancer, is a patient of Dr. Lippencot, and likes her. Lippencot was my first CLL doctor, and I fired her. So depending on which door you knock on, you’ll get two different views of the same doctor. Perhaps you would benefit from both, depending on the cancer you need treated.
Word of mouth works on the internet, too. CLL Forum has a section called “Doctors and Centers” in which people ask questions about, and describe their experiences with, doctors who treat CLL. (By and large the comments are complimentary, by the way.) On the ACOR CLL List, someone will occasionally ask “Can anyone recommend a doctor in Gotham?” and several people will reply, both on the list and privately off the list.
This works, sort of, for CLL, because there are specific discussion groups for the disease. But what if you are looking for a local urologist, or gastroenterologist, or orthodontist?
All that patient word of mouth has joined the internet age in a useful website called RateMDs, which contains more than 400,000 patient reviews of doctors and dentists.
Words to the wise, sort of
Personally, I think it’s about time something like this was created. Not that there aren’t pitfalls -- some patients simply aren’t going to be fair in their assessments and some doctors are going to try to game the system by encouraging patients to comment favorably -- but we’re all adults here, and we can more or less separate the reasonable reviews from the BS.
Any system of evaluating doctors is going to be subjective, based upon user impression and experience. To make it work, it needs to be designed intelligently, with some safeguards to insure a reasonable degree of fairness. RateMDs, located in Sunnyvale, CA, lets physicians post rebuttals and removes comments that are libelous. It is, for example, OK to say the doctor “has the bedside manner of an orangutan” but you can’t say “the doctor killed a patient.”
Of course, some doctors are not happy about this regardless. For a long time doctors have existed “above the law,” seldom held responsible in the court of public opinion. But that great equalizer, the internet, is changing things.
The creators of RateMDs offer this simple statement in their FAQ:
“We're just average patients who happen to know how to make websites; we are not doctors and are not affiliated with any medical organizations so we don't have any conflicts of interest. Having visited several doctors in the past few years, we became frustrated with the treatment we received, and the lack of comparative information available for choosing a good doctor, so we decided to create this web site to help people who have had similar experiences.” Or as RateMDs co-founder John Swapceinski told Forbes, "Patients are ultimately the customer, and they're paying for a service, and they can decide whether or not they're satisfied."
RateMDs covers doctors in the US, the UK, Canada, and Australia. American doctors can be sorted by state and profession. Patients are encouraged to rate them on a system of one to five points, five being the highest, in four categories: staff, punctuality, helpfulness, and knowledge. The scores assigned by all patients are then averaged in each category; an “overall quality” rating is assigned based upon the helpfulness and knowledge ratings. Patients are also given space to describe their experiences, and these narratives form the heart of the evaluation.
Before commenting, patients are told: “Please make your comments detailed, helpful and polite and tell us WHY you rated as you did. Libelous or very short comments will be deleted. Further, this is not the right forum for reporting illegal activity, unless you include a link to a site with supporting evidence. And remember, you are legally responsible for what you write here.”
Spend some time surfing around the site and you will see a reasonably high level of satisfaction, with most of the negative comments concerning the doctor being rude or hurried and paying little attention to detail.
There are some amusing stories. One man visited a dentist and ran into a little problem when he called the dentist “dude.”
“I was scheduled for a root canal after suffering for almost 2 months,” the patient wrote. “I asked a question, using the word 'dude' at the end of the sentence. He refused to work on me because he said, 'no one calls me dude.' I apologized and explained that I didn't mean anything by it. I left his office in pain and disbelief. I guess when he is charging over $800 for approximately one hour of work, he can afford to be a prima donna. I need a dentist who is more compassionate and can understand that after two months of pain, antibiotics, and pain medication, perhaps a patient could be off their game a little. So, be on your toes, only speak when you are spoken to, and for goodness sake don't call him 'dude.' He has absolutely no sense of humor.”
Avoiding the urologist from hell
Of course, there are more serious issues at stake. I used the site to find a urologist, for example, and ran across some interesting information.
In my town and on my health plan, there is one urologist. My primary care doctor gave me a referral to this guy for a routine prostate exam and I decided to check him out at RateMds.
Based on three reviews, he had a low “overall quality” score of 2.3. One reviewer said this:
“This doctor was hired to repair a recurring hernia and testicle pain. Not only he did not repair the hernia (open surgery without any mash reinforcement) he did cut the blood flow to my testicle which within six months slowly died of starvation. He ignored my complaints for those six months and then he said: "Oh well, it is not a big deal, testicles are like kidneys -- you have another one." The dead testicle was removed last month. I am facing a lifetime of expensive HRT [hormone replacement therapy] and of course the damage done to me and my family life is obvious, and this man will keep doing this until who knows when.”
Hmm. Nothing like the prospect of a dying testicle to get the average man's attention. So then I went to the other place where I check on every new doctor I make an appointment with, the state medical board. (Conveniently, RateMDs provides a link to each state’s board.) The board website provides information about the doctor’s education, residency, area of medical interest, whether they are board certified in a specialty, and license. It also lists any medical “board investigations and actions” and whether there is any “malpractice/criminal information.”
Sure enough, this doctor had one “board action” in which he received a letter of reprimand in 2004 for “failure to timely repair a damaged ureter that contributed to the death of the patient.” Clicking on a link took me to a 5-page PDF describing the incident in detail.
After reading the RateMDs review and the PDF, I decided to take my prostate elsewhere. Back I went to RateMDs. I expanded my search geographically and matched the names on my health plan against the doctors who had reviews and found one with four reviews and an overall quality rating of 5.0.
Here was a typical comment:
“Superb surgeon and doctor. Treated me for testicular cancer, removed the testicle and did follow-up prosthetic surgery. All healed well and quickly. Very knowledgeable, and extremely empathetic and supportive. I would not hesitate to recommend him. Great bedside manner. A very genuine nice guy, who is extremely highly skilled.”
So I went to see him and found him to be as advertised: professional, knowledgeable, and friendly.
And all this thanks to RateMds, with an assist from the Arizona Medical Board.
I did the same thing when looking for a gastroenterologist and was similarly happy with my choice.
Without RateMDs, I would have been wandering around in the dark, hoping for the best, and not necessarily getting it.
There is a lot riding on the doctors we choose -- our health, our time, our money. “Luck of the draw” and blind referrals are not reliable methods of finding a doctor. As countless CLL patients have discovered, having a medical degree does not always mean a doctor can provide an adequate standard of care. Sites such as RateMDs provide a worthy and valuable service. The ass you save -- or the testicle -- my be your own.
I was going to stay clear of politics for a while, but as some of you may have figured out I am a bit of a political junkie and I can’t really help myself.
As we all know, Barack Obama scored an impressive win in Iowa and now stands to reap the rewards with a probable victory in New Hampshire on Tuesday, where he is starting to lead in the polls. Could it be that the presumed Democratic nominee and next president, Hillary Clinton, is watching her dreams evaporate as Obama’s sunny message gets hotter and hotter and threatens to go supernova?
I saw Obama’s victory speech on Thursday and it was, indeed, a fine oration. Obama can effectively weave together our national story and his personal story and what it means to believe in ideals larger than ourselves. He is not quite so good at debating, or at one-on-one interviews, but give him a platform and a microphone and a prepared speech and he is right up there with Bill Clinton and Ronald Reagan.
Hope is always a powerful force in politics. And I think that one of the reasons it resounds so much now in the Democratic primaries is that for the past seven years most Democrats and many independents have felt profoundly hopeless and powerless. We have watched the country go downhill in almost every respect, often betraying those ideals we were raised to believe in, which has made it all the more painful. And until the Democratic victory in 2006, we were shut out of the process of governance by a take-no-prisoners approach exemplified by the leadership of Tom Delay in Congress and Bush, Cheney, and Karl Rove in the White House. All this happy talk from Republicans about “reaching across the aisle” didn’t start until after they became the minority party on Capitol Hill.
Barack Obama is a thoughtful man who offers an idealized version of how things ought to work, but I fear that is not the way they do, in fact, work. Almost every significant reform that has been accomplished in this country has come through, as Winston Churchill once said, “blood, toil, tears, and sweat.” The civil and voting rights acts of the 1960s passed not because everybody suddenly realized that it was criminal to deny people equal rights based upon race but rather because Lyndon Johnson twisted arms and busted heads to get the legislation through Congress. How did FDR get a conservative US Supreme Court to stop blocking some important aspects of the New Deal? By threatening to increase the number of justices and pack it with his own people. How did labor unions become established? Not by asking politely, but by workers striking and being beaten and dying in the streets. (The same is true, of course, of those who fought the long struggle for civil rights, without which the stage for Johnson's legislation could not have been set.)
Not everything has to be confrontational -- and I think most Americans are tired of the hyper sense of divisiveness that has characterized the Bush era -- but history is written by those who stand their ground and fight. For good or ill, Dubya has done just that on Iraq: he won’t take “no” for an answer, he insists on the rightness of his policy, and he has indeed kept us in there long after most Americans thought it wise.
And elections are won by negative things as much as positive ones. Attack ads work. Swiftboating works. Wedge issues work. And sad to say, as much as most Americans say they don’t like these things, they are indeed swayed by them.
Now, has something finally happened to change all that? Has there been come cosmic shift in the political landscape? Maybe I’m just getting to be an old fuddy-duddy, but I am skeptical.
That is the reality of politics, and that is why I prefer the John Edwards “fighting” approach when it comes to getting things done. My fear about the rather inexperienced (and possibly naive) Obama is that he could suddenly find himself facing bare-knuckled politics and not be capable of coping with it effectively. When was the last time, if ever, that we had a “gentlemanly” general election in this country? 1792?
It’s an exaggerated example, but Marilyn put her finger on it the other day when she said that what we Democrats need is not a Neville Chamberlain but a Winston Churchill. Chamberlain compromised with a man who had absolutely no interest in compromise and he accomplished nothing. I fear that there can be no real compromising with the GOP leadership, or with the entrenched corporate interests that try to run the show in Washington. Like Churchill, we need to recognize the opposition for what it is and we need to fight like hell.
In other words, blood, toil, tears, and sweat.
Is Barack Obama the man to lead that fight? Or would I rather have John Edwards or even Hillary Clinton at my back in a brawl?
Maybe I am wrong about Obama, maybe something has indeed changed in this country -- Mike Huckabee's "positive message" campaign is a breath of fresh air on the GOP side (good luck getting past the GOP establishment, Mike) -- but I have seen too much in history to believe that we will get, say, universal health care, without kicking some major ass.
It’s the new year, and it’s time to pick a new president. In just three days Iowans will caucus, and five days later the people of New Hampshire will vote, and then it’s off to the races, with Feb. 5 being Super Tuesday, when some 20 states vote, including mine.
I have been watching the debates, enduring extended interviews with the candidates on C-SPAN and Charlie Rose, and generally investing far too much energy in trying to make the right choice. If you haven’t figured out who you’re voting for, the time to do so is fast approaching. Maybe I can help.
Of course, if you’re planning on voting Republican, there is little I can do except to suggest that you take two aspirin, go to bed, and see if it passes. For everyone else, I offer the following analysis:
In a field of good Democratic candidates, John Edwards has the edge. He has the edge because of his health care reform plan and his dedication to putting it front and center if and when he becomes president. I saw his wife Elizabeth on C-SPAN the other day and she pointed out that John will make it his number one priority, with the intention of signing universal health care into law by July 2009.
Even if it takes a few months longer to achieve, no other candidate has brought the passion to this issue that Edwards has, and no one has as good a plan. As I have written in the blog before, Edwards would give Americans the choice of staying with private insurance or signing on with an expanded Medicare program. You will be able to vote with your feet as to which type of coverage you prefer. You will not be forced to choose 'socialized medicine," nor will you any longer be at the mercy of capricious market forces that leave many with no insurance, or with inadequate insurance.
Even if health care were not such an important issue, I would still be supporting Edwards. Like many Americans, I think things in Washington are dysfunctional. Big problems face us and no big solutions are offered. I also agree with him that part of the problem is that lobbyists, particularly those for corporate interests such as oil, drug, and pharmaceutical companies, call the shots too often. Why, for example, do you think Medicare is forbidden to negotiate with drug companies for lower rates for prescription drugs?
Politics is the art of compromise and the American political system is designed to balance competing interests, but there are times when the system itself becomes unbalanced and lopsided; in these times a leader is needed to put powerful interests in their place. Teddy Roosevelt busted the trusts. We need someone now to stand up for American families and American workers, not to compromise their opportunities away. This view is shared not only by some liberal Democrats like myself but also by libertarians like Ron Paul and conservative populists like Pat Buchanan.
So, for those who say Edwards is too confrontational, I’ll let the candidate himself reply. This is what he said when the New York Times asked him about Barack Obama’s nice guy approach and how it would play with insurance and drug companies:
"You can’t nice these people to death. You’d better send somebody into that arena who’s ready."
Can anyone seriously doubt the truth of that statement?
I appreciate that fight and that spirit, though I have not always been an Edwards fan. But something has changed in the man since 2004. I think his natural populist tendencies have come out now that he no longer has to hedge his bets representing North Carolina, a rather conservative state. And I think Elizabeth’s experience with cancer has helped the Edwardses focus more on what is truly important to them, which is something they have talked about. This happens with us CLL patients and it is natural that it would happen with them, too.
John Edwards has two other things going for him: He can reach across party lines and bring independents and some Republicans on board to win the election. And he can be a moving and impassioned speaker. I glued myself to C-SPAN and listened to his Jefferson-Jackson Day speech in Iowa, as well as the speeches of all the other candidates. His was the only one to bring a tear to my eye, and I felt he was more effective than the reasoned but reserved Obama and the somewhat robotic Clinton. In John Edwards we Democrats have a candidate who represents real change and an excellent chance of success in November. The also-rans
As I said at the outset, there are a number of good Democratic candidates.
I have grown to respect Chris Dodd, whose impassioned defense of the Constitution and its protections for civil liberties, which the Bushies seem to regard as some sort of inconvenience, is appealing. His decision to return to Washington to fight the FISA bill, which would give a pass to telecom companies that handed your private information over to the feds without a warrant, is a definite plus. Dodd is clearly intelligent and experienced, though with a somewhat senatorial speaking style overlypunctuated by the word “here.”
Joe Biden also impresses. He has the right foreign policy experience and instincts to deal with thorny issues such as Pakistan, Iran, and Iraq. He has shown an ability to speak in short, pithy bursts that combine humor and common sense, and thus comes across as an appealing figure as long as he doesn’t start rambling. In his personal life, he is a man of quiet faith, of modest means, and one who has overcome the tragic loss of his first wife and infant daughter to a drunken driver.
In a country hungry for change, no one represents "new" quite so much as Barack Obama. The Illinois senator is just different enough -- young, African-American, not in Washington long enough to be a creature of the place -- that he appeals to the emotional need for, as Monty Python says, Something Completely Different. He is a good speaker and his argument that we need to rise above the sort of politics we have been experiencing has appeal. But I am forever reminded that, in the street thug world of elections, nice guys usually don’t finish first. I also think he is a little shy on experience. Three years in the US Senate, much of which has been spent campaigning for the White House, is a paltry amount of time to learn the ropes of governance. Serving in the Illinois state legislature may have been adequate experience in the days of Lincoln, but those were simpler times. I can accept the argument that judgment trumps experience, and while I appreciate Obama’s opposition to the Iraq war, one good call does not make for a record of good judgment. With Obama we are clearly taking a big chance: he may work out, he may not.
In contrast to Obama’s freshness, Hillary Clinton is the familiar choice, the establishment candidate. After all, she and her husband are the Democratic establishment, such as there is one. If “establishment” means stability and experience, it also means, for many, a failure to get things done. Voters think the Democratic Congress they elected in 2006 has largely failed them by playing the same old games. They are reminded of the Clinton era, and of concepts like “triangulation” and the definition of “is” and they are a little worried that another Clinton presidency will not bring the real change they hunger for. Perhaps this is a bit unfair to the senator from New York, but her campaign’s wanton attacks on Obama -- everything from kindergarten to cocaine -- have not helped overcome this concern. Hillary Clinton would probably be a good president, and I will happily vote for her if she is the nominee, but I do not think she is the strongest choice in the primaries.
I have a soft spot for Dennis Kucinich, who calls it as he sees it, who has been right on the Iraq war since the start, and who has challenged the other candidates to find principle and consistency in their actions. I am not sure the country is ready for him, but I appreciate the fact that he gives the left a sincere voice in party affairs.
Bill Richardson seems like a nice guy but somehow I do not get the impression, despite his long resume, that he is quite ready for the presidency, or that he has the debating and speaking skills to inspire and persuade. Fortunately for us Democrats, the GOP field is about as weak as any ever was. Mike Huckabee has an easy manner and a good sense of humor but his ineptitude on foreign policy and his tendency to wear his religion on his sleeve will mean trouble in the general election. Mitt Romney flip flops more than a fish out of water and has a patrician, Kerryesque quality that is not appealing. He looks like a mannequin that has come to life, and he has all the personality of one. Fred Thompson is a decent enough fellow but dull and uninspiring, all the more surprising since he has made a career as an actor. Rudy Guiliani has no foreign policy experience, parrots the neocons who got us into this Iraq mess, and has made just enough bad judgment calls in his career to sink him in November.
Ron Paul has developed a following among libertarians and some traditional conservatives, who rightly think the Republican party has left its roots, sold its soul to corporate interests, and ended up in the land of fiscal irresponsibility, unnecessary foreign intervention, and disrespect for Constitutional rights. I would argue that not a few Paulites -- Paulies? -- might consider a vote for Edwards over someone like Romney.
And finally, there’s John McCain, the exception to the rule. I disagree with him half the time but I respect his independence of mind and his experience. He is the best-qualified Republican running and would do best in the general election. Here’s hoping he continues to grate on enough purist GOP voters that he is denied the nomination, just as he was in 2000.
Regardless of who the Republicans select, it promises to be a Democratic year. But we should not be overconfident; in my view our best bet to win and our best bet to bring about reform in Washington is John Edwards.
February 2014 in Sedona, AZ, slimmed down to 144 lbs.
My name is David Arenson and I have chronic lymphocytic leukemia. It may kill me. Then again, it may not. Life is full of surprises, although I must admit that this is not the sort of cliffhanger that I had in mind for my 50s.
Until a few years ago, like most people, I had assumed death and disease were the province of old age, not the prime of life. I was just an average person health-wise, and feeling rather fine, thank you. I passed by the occasional wheelchair-bound person or bald-headed chemotherapy patient and didn't think that sort of thing would ever apply to me. The odds were against it, after all. Then, after a blood test at age 46, I became one of those people.
And so, my life has changed. I still enjoy the same things I always have – my beautiful and wonderful soulmate, Marilyn, and music, and walks in the woods, and cheap Asian food at strip malls, and movies in which a giant reptile threatens an entire city.
But I also have a new reality that intrudes, one where mutant B lymphocytes threaten my entire body, and one which requires becoming accustomed to unfamiliar and intimidating territory. My spleen and lymph nodes are swollen and my neck sometimes looks like that of a chipmunk storing too many nuts; bothersome nodes in my left pelvic area are a constant reminder that something is wrong with my body. Over time my immunity has been degraded and I have had to rely more on antibiotics to shake infections that once gave me no pause. I have also experienced the joys of autoimmune hemolytic anemia, of which there are none, which is a scary condition in which the body destroys its own red blood cells, and which leads to fatigue.
My CLL has had more than a physical impact. It has been quite an education -- both in terms of what I have learned about my ability to cope with what once was unthinkable, and in terms of navigating the almost freakishly contradictory world of CLL management and treatment. Needless to say, only a fool treads there without getting the lay of the land; too many local doctors are simply clueless, and even the experts can disagree. I do not claim to have it all figured out, and I expect that I never will, but I am doing my best, and I hope some of my thoughts can be of use to you.
So, if sharing my journey helps you along the way, it will have been my pleasure, something green and growing in this hard, new landscape. We help each other as we can, and this is why we have a vibrant CLL community of websites, forums, and blogs (see links below). The end of the circle is the start of the circle. What goes around comes around.
Writing has been in my blood longer than CLL. I am a former newspaper reporter and editor and co-author with Marilyn of two humor-trivia books, Disco Nixon and Rambo Reagan. Marilyn and I met at the University of California at Santa Cruz and now live in the red rock country of Northern Arizona . . . CLL Diary has been featured in CR, the magazine of the American Association for Cancer Research, and in Family Practice Management, a publication of the American Academy of Family Physicians. Besides writing about CLL, I helped establish CLL Forum, one of the largest discussion groups for patients and caregivers.
As we patients eventually learn, CLL is not a one-size-fits-all disease. Some cases are indolent, some progressive, some quite aggressive. Prognostic tests can give us a much better idea of what type of CLL we are dealing with. Knowledge is power, and I believe patients should have these tests and know what they mean. They do not provide a complete picture, and sometimes clinical symptoms tell a different story than one might expect from the results, but they are important tools that can help determine the when and what of treatment.
Here are the tests: IgVH mutational status, FISH, ZAP-70 (as done at a research institution such as UC San Diego, not a commercial lab), and CD38.
My tests indicate a progressing disease. I am IgVH unmutated and ZAP-70 positive, as measured at UCSD. I developed an 11q deletion per FISH in 2006, which disappeared in 2012 for some mysterious reason, giving way to a 13q deletion. I am CD38 positive now, despite having been CD38 negative for years.
Given my tender age, I will always be navigating treatment options if I want to have any hope of living a normal life span. Knowing my test results helps me plan ahead, and knowing the possible end point in my battle with CLL helps me plan what treatments make the most sense, and in what order. Like many CLLers, I am encouraged by the progress being made by new drugs such Ibrutinib and ABT-199; not to mention the news that T-cells can be supercharged to wipe out the CLL -- in much the same ferocious way that macrophages went after my red cells during hemolysis with AIHA.
The "when and what" of treatment is a subject of great debate among CLL experts as well as patients and local doctors. I tend to take a conservative approach, ever aware of the fact that overall survival in CLL depends not just on the effectiveness of your first treatment. What you do for an encore -- your ability to respond to treatment again, and then again -- may determine how long you get to stand on the stage. The late CLL expert Dr. Terry Hamblin once wrote that CLL is a war of attrition, and I am ever mindful that such wars are won, if they can be won, slowly.
Whether my decisions ultimately are proved wise will be written in these pages. I began using single-agent rituximab (Rituxan) in 2004, adding the steroid methylprednisolone in March 2007 to combat AIHA. In October 2007, after a severe AIHA relapse that left me steroid refractory, I was treated with Rituxan + cyclophosphamide, vincristine, and prednsione (R-CVP). In January 2009, when AIHA and hemolysis of red blood cells returned, I had Rituxan + cyclophosphamide and dexamethasone (R-CD). I used this a few times to control the condition, with shorter and shorter periods until AIHA relapse. Starting in February 2010 I used Arzerra (ofatumumab) and Revlimid (lenalidomide), and then for a year and a half maintained control of the disease -- and the AIHA -- with Revlimid alone. Alas, the Revlimid came at a high price in terms of blood clotting issues, and as of 2012 I was treated with bendamustine and rituximab, which gave me a CR in the marrow and blood, leaving some swollen lymph nodes behind.
2013 is turning out to be my most challenging year yet, with the arrival of Richter's Transformation in April. Up to 10% of CLL patients can expect to develop Richter's, in which some of the CLL clones mutate into a more dangerous B cell lymphoma. Richter's is fatal in some 50% of cases, but it also can be beaten with chemotherapy and stem cell transplant. Read my latest posts for updates on my experience.
My best advice to patients is to gather all the facts you can about your CLL and then think ahead and plan ahead. Develop a long-term strategy, but expect to have to roll with the punches. And don't be rushed by doctors, family, or anyone else into a decision you are not comfortable with: Treating CLL is almost never an emergency. Take the time to learn and reflect, and then go with your intuition.
There are no guarantees that your choices will work out, of course, but at least you can rest assured that you put your heart and soul into making them. That sort of effort is the effort that can, with luck, beat cancer.
It's a peace sign, or a V for victory, not sure which
Quotes I Like
"The thing in life is not to know all the answers but rather to ask the right questions." -- Anonymous
"Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." -- Vaclav Havel
"The man who never alters his opinion is like standing water, and breeds reptiles of the mind." -- Blake
"We must be willing to let go of the life we have planned so as to have the life that is waiting for us." -- E.M. Forster
"Think of all the beauty still left around you and be happy." -- Anne Frank
“Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.” -- Greg Anderson, lung cancer survivor
"I had a choice to make when they said I was going to die. I could chose to live the rest of my life dying, or I could chose to live life until I die. And I chose to live life'. -- Anonymous cancer patient
"Life can only be understood backwards; but it must be lived forwards." -- Soren Kierkegaard
"It's always something. If it's not one thing, it's another." -- Roseanne Rosannadanna
Either way, we'll be remembered...
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Yesterday I bookmarked something in my Bob Goff devotional, *Live in Grace,
Walk in Love, *that I wanted to explore in my writing. This morning I
started l...
Intro To My Story
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This is the story of my finding out I had an incurable and lethal form of
leukemia. It starts in early 2002. I've been lucky, as I've lived more than
twelv...
Research Plug!
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Hey there everyone,
Hope is a super powerful medicine - for both patients and their doctors. I
am an advocate of clinical trials because in the 9 years I...
ICU
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The IvG was infused, but the red blood cells continue to fall and the
source has been identified as a leaking spleen. His clotting factors are
worse than l...
Recent Walks
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This old blog lists my John o'Groats to Land's End Walk in 2009 and may be
of use to others undertaking a similar walk.
There is also a record here of a se...
2 years of normal life
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7 Oct 2013 marked my 2nd year post stem cell transplant, and 2 yrs of CLL
free life.
I am very blessed to be still alive. Have not been updating and hope ...
More side effects from trial
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I'm still on the GS-1101 (CAL-101) trial, but I've been having some
problems. I've developed cataracts in both of my eyes. This can be
related to steroid...
Cancer Networks and Their Value
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Here is an article written by David Haas whose blog is located at Hass Blagg
Cancer Networks and Their Value
Few things in life are as tragic as a cancer di...
Covid Saliva Testing - Cheaper is Better
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Saliva testing for Covid-19 may just be better than nasal swabs and cheaper
too. It's preliminary, but Yale University has published a letter in *The
Ne...
December 3, 2018 - The Recreation Floor
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Yesterday and today Claire and I have had the opportunity to explore a part
of Memorial Sloan-Kettering we hadn’t encountered during my earlier
hospitali...
I’m Baaack!
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I have been away too long and I apologize. This is the longest I have been
away from the blog since I started it in 2008. My Mail program on my Mac
has b...
Job Redux and the Third Chapter|
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0 people like this. The downturn in the economy has done us a favor in a
strange and back-handed fashion. As many of us boomers watched our
retirement acco...
I am not a doctor and I do not play one on the internet. If you take something I say as medical advice and die as a result, perhaps in your next life you will not believe everything you read on the internet.
Copyright 2005-2014 by David Arenson. All rights reserved. Material is for the personal use of CLL patients and caregivers and may not be used or reproduced for commercial purposes.