No, that's not my new pet name for eosinophils.
It was my pet name for my daughter and her good buddy Meryl, an exuberant girl who lived next door to us before her family moved back to England. She's now 22, a graduate of the London School of Economics, a law student and a field rep for a Member of the UK Parliament. Mark my words: Meryl will one day be a Member of Parliament, if not the Prime Minister of the UK.
I got to see Meryl and her mom, my friend Carla, under the worst of circumstances this week - for the funeral of Brian, Carla's brother. I first heard of the City of Hope and bone marrow transplants 15 years ago when Brian was diagnosed with leukemia. After two transplants and 15 years, we assumed he'd live forever (or at least long enough to see his niece Meryl become an MP). Battered lungs and complications from pneumonia were the final culprits.
Brian was a City of Hope "Success Story" on the website, but, apparently, you are no longer considered a success if you die. His story has been removed from the site. His death makes me sad, but the removal of his moving story makes me sadder. It seems like the City of Hope should just move them to a special "in memory of" section instead of obliterating all traces.
I was moping about this when I received a call from Meryl this morning. She called to say goodbye, and then asked me if I remembered the "Love Bug" song that I made up for her and my daughter. Of course I did, and I sang it for the future Prime Minister of the UK, loud and clear.
And now I'll sing it for you:
LOVE BUG
Sing a new song
LOVE BUG
Sing it out strong
LOOOOOVE BUUUUUUG!
Friday, April 10, 2009
Thursday, April 9, 2009
Here We Go Again
I returned to the City of Hope today for the results of my Tuesday tests, and, sure enough, the EOS count jumped another 10% in one week.
I won't lie to you; those little buggers scare me. I'll be relieved to start the attack with a daily dose of 60 mg of Prednisone, the drug I call my ironic little diet pills. I'm already losing a pound a week (five pounds total), thanks to the EOS. If I'm not a complete glutton, I will now lose weight at an even faster rate. Let the gorging begin!
My doctor is still reluctant to give me an official diagnosis of HES (hyper eosinophillic syndrome), primarily because it's such a rare blood disorder. We knocked one rare blood cancer into remission. What are the odds that I would immediately develop another, unrelated blood disease?
Our short-term strategy is to decimate the EOS with the Prednisone and eventually taper off. And then we'll play the watch and wait (i.e. monthly monitoring) game to see if they come back again. If they do, then we'll develop a different plan.
This afternoon, I used the City of Hope computers while I was between appointments. Both hands were on the keyboard, frantically trying to set up interviews for an article that's due tomorrow. I started coughing, and my busy hands didn't make it to my mouth in time. The "gentleman" (not a patient) sitting next to me used his nastiest tone to admonish me, "You need to cover your mouth." I used my surliest voice to respond in mock politeness: "I'm so sorry that I failed to do that. I will work hard to be better the next time, especially since you have taken the time to remind me of this in your nicest possible voice."
I actually did work hard to supress my cough and cover my mouth after that, especially when I was in the waiting room with masked patients. I was trying to make amends for my earlier bout of bitchiness.
Lord help us all if the Prednisone makes me more irritable.
I won't lie to you; those little buggers scare me. I'll be relieved to start the attack with a daily dose of 60 mg of Prednisone, the drug I call my ironic little diet pills. I'm already losing a pound a week (five pounds total), thanks to the EOS. If I'm not a complete glutton, I will now lose weight at an even faster rate. Let the gorging begin!
My doctor is still reluctant to give me an official diagnosis of HES (hyper eosinophillic syndrome), primarily because it's such a rare blood disorder. We knocked one rare blood cancer into remission. What are the odds that I would immediately develop another, unrelated blood disease?
Our short-term strategy is to decimate the EOS with the Prednisone and eventually taper off. And then we'll play the watch and wait (i.e. monthly monitoring) game to see if they come back again. If they do, then we'll develop a different plan.
This afternoon, I used the City of Hope computers while I was between appointments. Both hands were on the keyboard, frantically trying to set up interviews for an article that's due tomorrow. I started coughing, and my busy hands didn't make it to my mouth in time. The "gentleman" (not a patient) sitting next to me used his nastiest tone to admonish me, "You need to cover your mouth." I used my surliest voice to respond in mock politeness: "I'm so sorry that I failed to do that. I will work hard to be better the next time, especially since you have taken the time to remind me of this in your nicest possible voice."
I actually did work hard to supress my cough and cover my mouth after that, especially when I was in the waiting room with masked patients. I was trying to make amends for my earlier bout of bitchiness.
Lord help us all if the Prednisone makes me more irritable.
Monday, April 6, 2009
Nipping the EOS in the Bud
I wrote last week about my misbehaving EOS. These are the same devious little culprits that infiltrated my lungs and GI tract last year and made me very, very sick.
I was originally scheduled to retest my blood a week from today, but I got a little nervous about waiting. Each day, I can tell that I am becoming incrementally sicker. A little more coughing. A little more fatigue. A little more short of breath. I don't think you can tell by looking at me or talking to me (except for the cough) that I'm not feeling up to par, but I am all too familiar with the mild symptoms that once turned into a three-month nightmare.
I finally emailed my doctor today and reported the progression. He scheduled me for bloodwork, a chest x-ray and pulmonary testing tomorrow and a consult on Thursday. He said that it's likely that I'll be put back on prednisone, the drug that's like Phen Phen for my lean body. To keep from losing weight, I'll have to start consuming 3,000 to 3,500 calories a day. Woe is me!
Actually, the timing couldn't be better. I'm planning to make biscuits and sausage gravy on Saturday morning and a calorie-laden Easter dinner on Sunday. (I think a serving of the scalloped potatoes alone has 2,500 calories.)
I was originally scheduled to retest my blood a week from today, but I got a little nervous about waiting. Each day, I can tell that I am becoming incrementally sicker. A little more coughing. A little more fatigue. A little more short of breath. I don't think you can tell by looking at me or talking to me (except for the cough) that I'm not feeling up to par, but I am all too familiar with the mild symptoms that once turned into a three-month nightmare.
I finally emailed my doctor today and reported the progression. He scheduled me for bloodwork, a chest x-ray and pulmonary testing tomorrow and a consult on Thursday. He said that it's likely that I'll be put back on prednisone, the drug that's like Phen Phen for my lean body. To keep from losing weight, I'll have to start consuming 3,000 to 3,500 calories a day. Woe is me!
Actually, the timing couldn't be better. I'm planning to make biscuits and sausage gravy on Saturday morning and a calorie-laden Easter dinner on Sunday. (I think a serving of the scalloped potatoes alone has 2,500 calories.)
The Big C HIts the Book Shelves
Cancer has long been a popular cinematic plot element, from Love Story to The Bucket List.
(As luck would have it, American Airlines showed the tragic movie Love Story on our flight to Hawaii, just two weeks after my MCL diagnosis. And by "tragic," I don't mean that Jenny dies. I mean the DOA script.)
If you're interested in a cancer patient's review of cancer movies, check out this list compiled by The Assertive Cancer Patient. (Click on the movie title to read the witty reviews.)
Even though most of us could easily tick off a half dozen cancer movies, we'd be hard pressed to come up with even one fiction book with cancer characters.
My friend Barbara (one of six Barbara friends), who is working on an MS in Library Science at UCLA, just sent me this link to a list of a dozen novels with characters with the Big C.
I've always thought it would be interesting to create an unsympathetic cancer character. (Jack Nicholson fits the bill in Bucket List.) Better yet, imagine the possibilities of an evil bone marrow donor who frames the recipient of his life-saving stem cells. They have the same blood DNA, ya' know, so there's got to be something a skilled (and twisted) writer could do with that.
(As luck would have it, American Airlines showed the tragic movie Love Story on our flight to Hawaii, just two weeks after my MCL diagnosis. And by "tragic," I don't mean that Jenny dies. I mean the DOA script.)
If you're interested in a cancer patient's review of cancer movies, check out this list compiled by The Assertive Cancer Patient. (Click on the movie title to read the witty reviews.)
Even though most of us could easily tick off a half dozen cancer movies, we'd be hard pressed to come up with even one fiction book with cancer characters.
My friend Barbara (one of six Barbara friends), who is working on an MS in Library Science at UCLA, just sent me this link to a list of a dozen novels with characters with the Big C.
I've always thought it would be interesting to create an unsympathetic cancer character. (Jack Nicholson fits the bill in Bucket List.) Better yet, imagine the possibilities of an evil bone marrow donor who frames the recipient of his life-saving stem cells. They have the same blood DNA, ya' know, so there's got to be something a skilled (and twisted) writer could do with that.
Saturday, April 4, 2009
The Obsessive Type
When you're a blood cancer patient, it's easy to become obsessed with your blood counts. That chapter is behind me, but now it's equally tempting to become obsessed about the rapidly mutliplying EOS in my blood.
It's nice to take a break and become obsessed with something else. The color of houses instead of the color of blood. The number of coats of paint instead of the number of white blood cells. Paint palette trends instead of EOS trends.
It's doubly nice when you can make that obsession into a story for the Home & Garden section of the LA Times. Read my story, House Paint as Obsession. (The color palette of the house in the photo, by the way, may look familiar. It's the one I poached for my house.)
It's nice to take a break and become obsessed with something else. The color of houses instead of the color of blood. The number of coats of paint instead of the number of white blood cells. Paint palette trends instead of EOS trends.
It's doubly nice when you can make that obsession into a story for the Home & Garden section of the LA Times. Read my story, House Paint as Obsession. (The color palette of the house in the photo, by the way, may look familiar. It's the one I poached for my house.)
Friday, April 3, 2009
Fast Food
What do you do when you want lunch in a hurry?
Go to Open Mouth, Insert Fork to find out how to have an Indian lunch at home in under 4 minutes, 4 dollars and 400 calories.
Go to Open Mouth, Insert Fork to find out how to have an Indian lunch at home in under 4 minutes, 4 dollars and 400 calories.
Wednesday, April 1, 2009
Trend Setting
I once had a writer friend who was a frequent contributor to Parade Magazine, the fluff-filled tabloid that's inserted into millions of small-town and big-city newspapers every Sunday. She specialized in spotting "trends," a task that's much easier than it sounds. Her editor told her if she could come up with three examples, she had a trend on her hands.
Of course, in medical parlance, "trend" has a different meaning - "general direction in which something seems to move."
Since I tapered off the steroid Prednisone in November, we've been watching my blood counts for changes in the Eosinophils (EOS)*. I started off with zero EOS, but then a trend started to develop. Every month, the EOS count would increase by 40 to 50%. If this trend continued, I figured I could be in deep doo doo by July (thought I'd throw in a little more medical speak).
I went in on Monday for lab work, and discovered that the trend wasn't continuing at the same pace. Those pesky little EOS decided to be fruitful and multiply exponentially. The percentage of EOS in my blood jumped up from 5% to 30% in one month (a 500% increase).
To be honest, I wasn't surprised. My hacking cough returned about two weeks ago. I've noticed that I'm short of breath after delivering a long-winded monologue or walking up two flights of stairs. Mild fatigue has set in, and I frequently join the cats in afternoon naps. At this point, the symptoms aren't impairing my ability to get things done or to enjoy life.
My doctor has asked me to reschedule my next appointment in two weeks instead of four. Let's just hope that this latest trend doesn't continue.
*EOS refresher course: The EOS are a component of the white blood cells designed to fight allergies or parasites. A few of them sit around twiddling their thumbs until they're called into action. When they're needed, they multiply and fight off the parasite with toxins. Normal range of EOS in the blood is 0 to 5%, with an optimal count of 2.5%
Sometimes, the EOS go haywire for no known reason. This is called idiopathic hypereosinophillic syndrome (HES), a rare condition that I was hoping I didn't have. If left untreated, it can cause severe damage to organs, especially the heart and lungs.
Eos is also the goddess of the dawn. I'm channeling her now, hoping that she'll lead me to the light.
Of course, in medical parlance, "trend" has a different meaning - "general direction in which something seems to move."
Since I tapered off the steroid Prednisone in November, we've been watching my blood counts for changes in the Eosinophils (EOS)*. I started off with zero EOS, but then a trend started to develop. Every month, the EOS count would increase by 40 to 50%. If this trend continued, I figured I could be in deep doo doo by July (thought I'd throw in a little more medical speak).
I went in on Monday for lab work, and discovered that the trend wasn't continuing at the same pace. Those pesky little EOS decided to be fruitful and multiply exponentially. The percentage of EOS in my blood jumped up from 5% to 30% in one month (a 500% increase).
To be honest, I wasn't surprised. My hacking cough returned about two weeks ago. I've noticed that I'm short of breath after delivering a long-winded monologue or walking up two flights of stairs. Mild fatigue has set in, and I frequently join the cats in afternoon naps. At this point, the symptoms aren't impairing my ability to get things done or to enjoy life.
My doctor has asked me to reschedule my next appointment in two weeks instead of four. Let's just hope that this latest trend doesn't continue.
*EOS refresher course: The EOS are a component of the white blood cells designed to fight allergies or parasites. A few of them sit around twiddling their thumbs until they're called into action. When they're needed, they multiply and fight off the parasite with toxins. Normal range of EOS in the blood is 0 to 5%, with an optimal count of 2.5%
Sometimes, the EOS go haywire for no known reason. This is called idiopathic hypereosinophillic syndrome (HES), a rare condition that I was hoping I didn't have. If left untreated, it can cause severe damage to organs, especially the heart and lungs.
Eos is also the goddess of the dawn. I'm channeling her now, hoping that she'll lead me to the light.
Subscribe to:
Posts (Atom)
