I was brushing my teeth Friday when I heard that my neighbor John McCain had chosen Sarah Palin of Alaska to be his running mate. My first reaction was “Has he lost it?” My second reaction was a mirror-smudging spit-take upon hearing a TV reporter say, “Her favorite food is moose stew.”
In a single stroke, McCain gave up his best issue against Barack Obama -- experience -- and showed that he is just another cynical politician whose slogan, “Country First,” is meaningful only when it is convenient for him. In the process, he has insulted the intelligence of the American people and cast his own judgment in doubt, looking more like a desperate opportunist than the statesman he purports to be. In contrast, Obama’s pick of a solid and experienced running mate in Joe Biden makes him look like Lincoln, Washington, and Jefferson rolled into one.
Readers of this blog know that I have had reservations about Obama and his lack of experience. I ended up voting for Hillary Clinton in the primary. I have always liked McCain, more or less, though I disagree with him on a great many important issues. For the first time in my life, I have been questioning whether to vote Democratic. (Marilyn, furious about the sexism she saw during the campaign, plans on writing in “Hillary Clinton” this fall.)
Now, thanks to the Palin pick, John McCain has pretty much convinced me that voting for him would be an unacceptable risk. For there is no way on God’s green earth that someone who has served 20 months as governor of a state with fewer people than Austin, TX, and whose prior experience was as mayor of a town of 5,469, is ready to assume the presidency of the United States and the leadership of the free world. As today's editorial in the Fairbanks News-Miner puts it, "Most people would acknowledge that, regardless of her charm and good intentions, Palin is not ready for the top job. McCain seems to have put his political interests ahead of the nation’s when he created the possibility that she might fill it."
If something happens to the 72-year-old, melanoma-prone McCain, I shudder to think of Sarah Palin negotiating with Vladimir Putin, or finessing Kim Jong Il, or dealing with a sudden nuclear crisis in Iran. And I have to wonder, too, whether a President McCain might not do something as rash and impulsive and nonsensical as he did in picking Palin. John McCain has thus cast doubt on his own fitness to serve.
I really do have to wonder about his temperament -- which Obama mentioned in his speech Thursday night -- and which has been the subject of some not-so-quiet concern by McCain’s own GOP colleagues. "The thought of his being president sends a cold chill down my spine," Sen. Thad Cochran (R-Miss.), told the Boston Globe. "He is erratic. He is hotheaded. He loses his temper and he worries me."
Consider me worried, too.
And we may be hearing the word "Eagleton" pretty soon if this "Troopergate" investigation shows Palin to have been playing petty politics in the governor's office.
The Palin pick has been just another episode in what has been a bizarre political year. As Marilyn said the other day, “Doesn’t this whole campaign have an air of unreality about it?”
There is something about the GOP ticket that smacks of a bad sitcom (I nominate Tim Conway and Tina Fay for the leading roles) -- the story of a crusty, doddering war hero married to a beer heiress who runs for office with a gun-toting, moose-eating, hockey mom who also happens to be governor of the 49th state, where she and her snowmobiling-champion husband are raising their kids Track, Trig, and Willow (Paper, Scissors and Rock evidently having been taken, as someone pointed out). Oh, and between the McCains and the Palins, they have ten homes, so there’s always another venue for a hilarious misadventure.
Except, let's hope, the White House.
Your president after next, possibly as soon as January, seen here with what appears to be a group of neoconservatives.
A CLL patient with an allergy to Tylenol, which is clearly noted in his chart, is treated at MD Anderson. Before his Rituxan infusion the nurses try to give him -- what else? -- Tylenol.
Another CLL patient -- me -- arrives for his first day of R-CVP therapy. “So, what are we doing today?” I ask the chemo nurse. “FCR,” he says.
A patient with a high lymphocyte count goes to a leading cancer center, Dana Farber, to find out what’s wrong. He is diagnosed with CLL by one of the "names" in the business. Chemo nets the patient a CR; it is only when he is coming out of remission two years later that he discovers, at the Mayo Clinic, that he has Mantle Cell Lymphoma (a much more aggressive disease) and was misdiagnosed in the first place. These stories have one thing in common: No matter where you go for diagnosis, care, or treatment, people are fallible. A chart is not read. Chemo orders are misread. Assumptions are made at diagnosis when every last “t” should be crossed and “i” dotted. People get busy, sloppy, or inattentive. It happens in all walks of life, and one should not assume that the gravity of the situation -- your health, your life and death -- inevitably provides an extra measure of competence.
I will never forget the e-mail I received from the woman with stable CLL who went to see a world-famous expert and was told that her platelets had crashed. Which had her in quite a panic until the doctor realized he was reading someone else's CBC. The purpose of this post is not to slam health care professionals, most of whom do a good job in a busy and stressful environment. It is to remind you, dear patient, to stay on top of all the little things so that they don’t become big ones. As a managing editor told me when I was a cub reporter: “When you assume something you make an "ass" out of ‘u’ and ‘me.’" Corny as hell, but prophetic.
Or as Ronald Reagan said about treaties with the Soviets, “Trust but verify.”
Or as the woman I know who went in for a mastectomy and had the wrong breast removed said, “How was I supposed to know that I had to remind them which breast to remove?”
Read here about a man who went to the Mayo Clinic and lost an eye because he assumed he was being seen by a doctor but was instead being seen by a man who looked like a doctor and acted like a doctor but was in fact a convicted criminal with no medical training. How was he to know the man was not a doctor?
How was our patient at Dana Farber to know that he had been misdiagnosed? Sadly, this error was to cost him his life, for at relapse he had to proceed immediately to a risky stem cell transplant and was unable to get anything close to the CR that was required for it to have a real chance of success. All too late he learned about a certain chromosomal translocation, t(11.14), that his first doctor should have been on top of.
That is the most extreme and tragic example of what can go wrong, for the patient tried to do everything right and the system failed him. Try as hard as we might, we cannot always navigate safely through a world of strange words, concepts, procedures, and tests.
But we have to try. Our only recourse is to follow my managing editor’s advice and assume nothing, not even the most simple or obvious thing.
For example, Marilyn or I check every chemo bag that is attached to my IV pole. Does it say "David Arenson" on the bag? Is the name of the drug correct? Is the dosage as planned?
Caretakers are extremely helpful for patients who are feeling sick, or worried and anxious, or who have been turned into zombies by medications. Benadryl lowers my IQ by about 50 points. Me . . . want . . . sleep.
In the case of the Tylenol at MD Anderson, the patient noticed the error. Later, as he snoozed away thanks to premeds with Rituxan dripping into his veins, his wife noticed that his blood pressure was not being taken, which is supposed to be standard procedure at MDA. That was error #2 of the day.
This sort of thing happens all the time. I know of one CLL patient who was given massive amounts of Decadron because the nurses did not understand the conversion between dosages of different steroids. 40 mg of prednisone does not equal 40 mg of dexamethasone (Decadron). Somebody assumed something and made an ass of themselves. Fortunately, no real harm was done.
Many patients live to tell the tale of a symptom that is ignored or dismissed but that turns out to mean something. My initial drop in hemoglobin last year, which my doctor and the head nurse assumed was due to marrow impaction, seemed a little too suspiciously rapid to me for comfort. I knew it was AIHA before they did, and it was only my insistence on tests being done that confirmed the diagnosis before I collapsed in the street.
Of course, like everyone else, I am not always so lucky at second-guessing and fielding curveballs. In March I made an appointment to see a dermatologist. When I got there I was seen by the physician's assistant, who used liquid nitrogen to burn off a few suspicious keratoses on my head. Later I asked why the doctor did not see me and was told that upon arrival I should "ask for the doctor specifically," otherwise he would probably delegate to the PA if he thought the issue at hand wasn't significant.
Well, it's all significant to me, and I had assumed -- oops, there's that word again -- that if I made an appointment to see a doctor, that's who I would see. I had better luck than the Mayo eye patient but still was blindsided by this wrinkle in the process. On my next visit, three months later, I asked for the doctor, who saw a suspicious growth that was biopsied and which turned out to be a squamous cell carcinoma. The PA had tackled it with liquid nitrogen during my previous visit to little avail; would a better-trained eye have noticed something "significant" at that time and handled it better?
Live and learn.
Treatment, obviously, is one area where getting it right is essential, especially when it comes to chemotherapy. Here are some common sense precautions you can take:
Arrive on chemo day knowing what is supposed to happen. Bring a complete list of drugs and dosages, including premedications. Try to bring a caregiver with you, especially if this is your first chemo experience, who can stay on top of things, including your reactions when the drugs are infused. More than once Marilyn noticed that my face would get flush during Rituxan therapy. You cannot see your own face, and if the premeds have zonked you out, you may not be aware as other symptoms come on. Nurses can get busy and step away; caregivers can watch things like a hawk.
Verify with the chemo nurse what is to be done, in what order, and at what dose and rate of administration. Let the nurse know if you have any allergies, or suspected allergies, to any of the drugs. Do not hesitate to ask to speak to your doctor, or the doctor on duty, if you have any concerns.
All this comes under the heading of "why you should become an educated patient," or at least an organized and thorough and vigilant one. Do not hesitate to be a pain, or to ask "stupid questions." Many health care workers appreciate patients who try to make sure things are going right. That benefits everyone.
Where does blind trust lead you? Perhaps to where you want to go. Or perhaps to life without an eye. As Louis Pasteur once said, "Do you ever observe to whom the accidents happen? Chance favors only the prepared mind."
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...
-
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
-
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!
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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!
-
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|
-
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.