Tuesday, June 30, 2009

New lupus drug? Could it be?

Check out a few paragraphs of this promising article featured in the Washington Post on Monday. The description of lupus as an evasive and confounding disease is quite accurate, don't you think?


HGS Hoping to Survive Final Test of Lupus Drug
Firm Is Upbeat Despite the Odds
By Michael S. Rosenwald, Washington Post Staff Writer Monday, June 29, 2009

In the high-stakes, high-risk, high-failure business of developing drugs, there are two events that test an executive's intestinal fortitude. One: The first time a drug is tried by a human. Is he still alive? Two: Getting results of final-stage testing. Please, let it have worked.

Around eight years ago, Human Genome Sciences survived the first event, when patients were first given the firm's experimental lupus treatment. Sometime in July, and many hundreds of millions of dollars later, they will gather in a hotel conference room to see how they endured the second crucial event -- final human testing results. David Stump, the firm's head of drug development, is hoping the first PowerPoint slide the biostatistician shows will say success.

[Plenty] of people on Wall Street predict that the Rockville company will fail. Lupus, a complicated autoimmune disease in which the body attacks its organs, is known as the drug industry's black hole, where even the world's top scientists go to fail. There hasn't been a new lupus drug approved in 50 years. Not long ago, biotech behemoth Genentech stumbled with its own candidate.

"No one has any real conviction that HGS's drug is going to work," said Geoffrey Porges, a Sanford C. Bernstein analyst. "Nothing has really ever worked in lupus. It's a very difficult disease." In downgrading the stock recently, Lazard Capital Markets analyst Terence Flynn told investors, "We continue to believe that the probability that this drug succeeds is extremely low."
The difficulty in going after lupus is that the disease waxes and wanes, heightening the possibility of a placebo effect. Also, because many organs are involved, it is difficult to measure success because the disease is a moving target. In cancer, drug developers generally target stationary tumors with a laser focus. Treating lupus is like trying to corner a hyper cat.

In key mid-stage testing in 2005, HGS fell short of the goal line. But when executives took a closer look at the data, they saw that their drug, now called Benlysta, was successful in treating a subset of patients who had biologic indicators in their blood showing that the disease was active. Wall Street analysts generally dismiss such retrospective analysis.

HGS chief executive H. Thomas Watkins said Wall Street's reservations did not bother him. He pointed to recent positive results from an extension of the last study, which showed that for patients who stayed on the drug, after four years there was sustained improvement in the disease.

"The consensus out there may be that we shouldn't count on it working, but that doesn't change the prospect of it working," Watkins said. "Our chances of success are independent of what the market thinks." Later in the interview, he said, "It will succeed, it will succeed," almost like a mantra.

[But] there is still room for doubt, [as Stump says]: "The patient variability component is still there." Translation: The cat is always on the move.

The stakes for HGS and lupus patients are enormous. For the company, it would be a significant validation of the founding principles of genomic medicine, but more importantly it would provide a much-needed source of revenue for a firm whose only product on the market is a treatment for anthrax. A lupus drug has the potential to become a billion-dollar drug.

Then there's the lupus patients, who haven't had a new drug in five decades and who currently take a combination of drugs with serious side effects. "The patients are very excited," said Sandra Raymond, president of the Lupus Foundation of America. "They have waited a long time, so this is a very exciting prospect. I believe we will have a new medication for lupus, and it will start with this drug."

Stump, the drug development chief hoping for that positive first PowerPoint slide, said: "Heaven knows these patients need something different." Everyone will know soon.

To read the entire article, click here!

Monday, June 29, 2009

Deliberately healthy...

Ugh! A summer cold! Just when I thought I was in the clear from catching Johnny's cold - bam! I felt that old familiar tickle in my throat. In fact, I think I felt the cold coming on the night before - my knees and hips were really achy (like lupus-achy, not just an ache from too much activity or an achy-all-over feeling you get with the flu) and it hurt to walk on the balls of my feet. Don't know if you know what I'm talking about with the feet sensitivity - but it happens to me all the time with lupus. It might be my elbows, feet, or hands - but it's as if nodules in those areas of my body just crop up and suddenly become super sensitive. I've met a couple of other Lupites who experience the same thing - don't know if it's an official lupus symptom or not. I just know it's a sign of something to come. Thankfully, it was just an indication of this crummy cold and not a lupus flare.

So the first couple days of this cold were the worst: scratchy, sore throat, head congestion, tired - you know, the typical symptoms - when you don't look or sound like you have a cold but you feel crummy. I'm now in the second phase of the cold: runny nose, sneezing, sinus congestion. I feel a lot better, but now everyone in the world knows I have a cold because of the way I keep sniffling.

When Johnny was sick, I couldn't figure out why he wasn't thoroughly enjoying my delectable dinners, but now I know it was the cold. He just kept saying he wasn't hungry, and now I get it. I totally lost my appetite for about 2 1/2 days. Really. Breakfast (usually my favorite) didn't sound appealing, lunch wasn't very enticing, and forget about dinner. I just didn't feel like eating anything. I choked down a few odds and ends during the day, but I even passed on some homemade chocolate chip cookies. Sick as a dog, I must have been, you say!

But as I was experiencing this loss of appetite (and don't worry, Mom - my appetite is back), I was reminded of what happens to me during a lupus flare. My appetite plummets...I don't have the desire to eat a single thing. Maybe it's the lack of energy, or the fatigue, or the overwhelming pain - in fact, I imagine it's a combination of the three. Whatever it is, I recall having to force myself to eat at least a little something all throughout the day. If you're not well-nourished, the physical and emotional strength to get well won't come. You just get weaker and more run down.

So - during those first couple of days of my cold, I tried my best to eat. Not a lot. But at least a little. I reminded myself that Deerdeepants needed her mom to be healthy and strong - and here she is leading by example. "Look, Mom - eating is fun! Don't just chew your food - embrace it!"

Thursday, June 25, 2009

I'm in the phonebook!!!

My first post-published review! If you haven't already, take a minute to check out the blog at My Life Works Today! - Maria from MLWT posted a review of my book, "Despite Lupus." Thanks to Maria for taking the time to read and comment on my book. The review is a real keeper!

And in other Despite Lupus news - we've officially arrived! (On Amazon.com, that is!) That's right - take another quick moment to check out Despite Lupus on Amazon. The search inside feature is up and running - so feel free to browse through the book. (Of course, Johnny's already searched the book for his name...glad I included him a time or two!)

Feel free to purchase a copy right from Amazon.com...and bring it to my next book signing and I'll add my John Hancock. Already purchased a copy of "Despite Lupus"? If so, think about posting a review of the book on Amazon - I'd love to hear what you think!

If you do order "Despite Lupus" from Amazon.com, but need another good read to qualify for free shipping - consider "Rebirth: A Leukemia Survivor's Journal" written by Deborah Ludwig. It's a great book - toss it in your cart for sure!

Wednesday, June 24, 2009

Just a quick reminder that my next book signing is coming up! Join me at The Java Shack in Arlington, VA on Thursday, June 25th from 9-11am. Can't remember the last time I was dressed and ready to leave the house before 8am...but this will good practice. :)

Here are the details - hope you can make it!

Thursday, June 25th, 9-11am
The Java Shack
2507 N. Franklin Street
Arlington, VA
Book signing, good coffee, and a chat with the author. Oh my!

Can't make it on Thursday? Stop by on Saturday from 10-11:30am - same place!
See you there!

Monday, June 22, 2009

The doctor is in

It's pretty obvious that I don't mind sharing my opinion. That's what blogs are all about, right?! So when it comes to giving my opinion about symptoms, medication, or other issues related to lupus, I'm the first one to offer up my two cents. But I rarely dole out medical advice without suggesting that a doctor be consulted at the same time. I'm happy to share my experiences, but consulting your doctor is paramount to making sure you and your disease get the best treatment possible.

That said, I remember a time not so long ago when people suggested to me that I "consult my doctor", and the thought made me cringe. Sometimes I just didn't want to hear what my doctor had to say - because whatever it was, it seemed to result in more tests, prescriptions, or limitations. But there were also times when my face would light up when someone suggested I "consult my doctor" - the thought of getting answers to my questions, the prospect of alleviating my pain, and the end of my frustrations often resulted from a visit to my doctor, and during those appointments, there wasn't any place I'd rather be.

Today, I rarely cringe from the thought of a doctor's appointment - although I recently had an appointment with my opthamologist that left me a little uneasy. I had a visual field test (to check my eyes to make sure the plaquenil hasn't had any adverse effects on my retina), and I'm not sure what the results will be. The test seemed to take longer than normal, which may mean that there's been a slight change in my eyesight. I'll keep you posted, but in the meantime - take a look at the poll on the right side of my blog - and tell me how you're feeling about the phrase "consult your doctor" today. Does it make you cringe? Does it bring you relief? Does it bring you a great deal of satisfaction because you're making the kind of progress you want, or does it give you a feeling of despair because you're not getting the results you need?

Let me know -and thanks for playing!

Sundaes on Mondays - how clever (and delicious!)

How clever is this! ACKC (Artfully Chocolate/Kingsbury Confections) is hosting "Half price Sundaes on Mondays" this summer. Stop by either shop - DC or Del Ray - today and order a yummy ice cream treat. Add sprinkles for me!

ACKC hosted two of my book signings - D.C. in May and Del Ray in June - with another signing scheduled for the D.C. location in July. Seems like I just can't get enough of their delectable treats!

Note their Monday hours - Del Ray: 11am - 7pm, D.C.: 10am - 9pm.

Friday, June 19, 2009

Voluntarily ask for help? What's that? I can't hear you.

On the heels of Wednesday's post, here's a little snippet from my book, "Despite Lupus." This excerpt comes from chapter 7, Letting Go for Good. Enjoy!

Making the decision to start letting go is a big one. It’s a huge step toward understanding, coping with and conquering your disease. Visions of a pain-free, fulfilling life should be clearer than they were before. If they are, consider yourself within close range of your objective. Before we get into the logistics of making the changes that accompany this decision, there are three minor points that should be addressed so you can permanently live well with your disease:


Picture the following scenario:
You’ve had a terrible day. You dragged your aching body into the office early, worked through lunch and dealt with one irate client after another. You just spent the last hour rehashing their complaints to your boss, making you late for your evening’s agenda of dinner with out-of-town friends. Your head is pounding, your joints are throbbing, and you can feel painful swelling beginning to take shape. Physically, you want to collapse on the floor of your office and wake up in three days. Instead, you mentally prepare to wear your pain-free “game face” for the evening. As you’re frantically heading out of the office, your husband calls to let you know that something’s come up and your friends aren’t going to be able to make it tonight. He tells you to just head for home. He’s ordered take-out for the two of you, and it will be ready and waiting when you get there. Relieved that the only thing you’re destined for tonight is a relaxing, restful evening at home, you tidy up your desk and head home.

Caught a break, didn’t you? You got lucky, and you know it. You were able to dodge yet another evening of pain, suffering, and overdoing, although the majority of your day wasn’t very pleasant. If this was catching a break, think for a moment what taking a break would have involved. What would have happened if you had: evaluated whether an extra hour of sleep would have been more beneficial than rushing in to get an early start at the office, taken a break for a nutritious lunch, asked your boss if you could fill him in first thing in the following morning, and/or voluntarily canceled your dinner plans? It would have been an entirely different kind of day. It might have been a lot less painful and lot more manageable.

Acknowledging the difference between getting a break from your hectic, demanding lifestyle and taking one comes down to one simple thing: you. Every day, you have the power to decide how painful the day is going to be. I know you can’t control lupus, but you can control your willingness to adapt to it.

For example, although grabbing a catnap when you’re tired might not sound daunting, consider that the act of sleeping isn’t the difficult part. It’s allowing yourself the time to get the extra rest in the first place. Take a weekend when you find yourself with an hour to spare. Would you voluntarily take a nap? No, you’d rather catch up on errands or projects around the house. However, what if someone in your family insisted that you take an hour to rest and relax? What if they went so far as to dim the lights, pull the shades in your bedroom and turn down the sheets on your bed? What if they ushered you under the covers and tucked you in nice and tight so that you felt warm and cozy? Do you think you could manage a wink or two? I bet you could.

Furthermore, if someone in your family insisted on doing the laundry or vacuuming, could you comply? And, what if your boss prohibited you from taking on any additional projects at work? Could you handle it? Probably so. Situations like these are no-brainers. But voluntarily doing so? That’s a different story. Once you realize how much you’re relying on those involuntary moments to save you from yourself, you can begin to willfully (and of your own accord) make those decisions for yourself. You must enable yourself to make smart, responsible, deliberate decisions and allow yourself to start letting go, voluntarily.

Wednesday, June 17, 2009

The "Tent Fix" for those of us who are "lucky"

So my nightly curfew isn’t going so well. I have every intention of hitting my 11pm mark, but something always seems to come up. I could list all of my excuses here – like the fact that Henry needed extra time to potty, a pressing email just had to be returned, or I had to make up a bottle for Deirdre for the morning – but they all sound so lame. I mean, I KNOW Henry needs about 20 minutes to do his deal right before bed…so why don’t I just account for that fact, and start 20 minutes earlier? Well – because I’m stubborn, that’s why. I want to eek out every last moment of time before going to bed – only to pay for it the next morning. If I go to bed at midnight, and Deirdre wakes up at 8am…then I’m already about an hour behind on my rest (I can’t deny that 9 hours of sleep at night is perfect, while 8 hours is cutting it a little short.) I know I could catch that extra hour of sleep during Deirdre’s morning nap, but you know me. I already have 14 things lined up that I want to get done during that precious window of time. So I need to make 11pm work. Good news is that I think I’ve found a solution. I’m calling it the “tent fix”. Here’s how it came about:

A couple of nights ago, I went to bed particularly later than I should have, like in the 12:15-12:30 range (and yes, Henry took a VERY long time outside…but that’s no excuse.) I knew I needed to prepare myself to be tired the next morning…but lo’ and behold, Miss Deirdre didn’t stir until 9:45am. 9:45am! Can you believe it? I got all the sleep I needed, and then some. But you know what? I got lucky. She’s not always going to sleep that long, and it’s certainly not going to be relative to the amount of sleep I need from one night to the next. So to make sure my mind doesn’t twist the circumstances of this one lucky night of sleep in such a way that convinces me that a 12am bedtime is acceptable, I’ve made a small little tent card that I keep on the kitchen counter. Know what it says? “You got lucky.” It’s true – and much more effective than if I wrote something like, “Go to bed” or even “11pm.” I needed a subtle, amusing little poke to keep myself disciplined, and I think I’ve found it.

Having trouble making the decision to stick to something that’s good for you and good for your health? Try a tent card. And if you do – let me know about it. I’d love to hear your good ideas!

On Friday, I’ll include an excerpt from my book, Despite Lupus, on the subject of decision-making. Be sure to stop by and check it out!

Monday, June 15, 2009

Can your iPhone keep you healthy?

Apparently! Word on the street is that the iPhone has an application called Illness Tracker which allows you to record your symptoms, pain levels, medications taken, and doctor's appointments - kind of like yours truly created years ago in an Excel spreadsheet. (Okay - I know my chronic control chart doesn't even compare...but I thought I'd try.) There's also an application that keeps track of your medicines called MyMedSchedule Mobile. Check out the endless options here. Who knew!

Click here to check out Illness Tracker, and see below for some quick highlights:

Illness Tracker's Features:

Remembers your illness history so you don't have to!
Keep separate calendars for various people (great for keeping track of illness / health in your family)
Record notes as often as every day
Export data as email
Useful for doctor's appointments...
Consult with Illness Tracker to report dates of illness, fever, etc.
Password protection (go to settings to activate)

On each calendar day, you may record the following:
Custom notes
Pain scale (1-10)
Indicate that medication was taken
Fever and temperature (Now multiple times each day!)
Doctor's appointment
Indicate that you are sick

And a big fat thank you to my brother-in-law for turning me on to the new iPhone software. He keeps me current - because I am so...not.

Thursday, June 11, 2009

Book Signing on Saturday. See you there!

Just a quick reminder that my next book signing is upon us. The details are below. Hope you can make it!

Saturday, June 13th from 10-11:30am

Spill the Beans Coffee and Chat House
1900 Elkin Street
Alexandria, VA 22308

Chat with the author
Buy a book and have it signed and dedicated, at no extra cost. :)
Order a cup of java to start your morning off right, and have Donna throw in a poppy seed muffin. You won't regret it!

See you there!

Wednesday, June 10, 2009

Tummy time for Mom

I hate to jinx it, but Deirdre is on the greatest sleeping streak of all time. She's going to bed between 8-9pm and waking up sometime around 9am. Yesterday - 9:23am! What mother wouldn't love to saunter into her baby's bedroom after a full night's sleep, and see this shining face staring back?

Yes, her current sleeping patterns (12-13 hours at night) plus two solid (read: long) naps during the day get the thumbs up from her mom and dad. Plus the fact that I'm now sleeping on my stomach (after 9 months of being pregnant and almost 7 months of nursing), I have absolutely no excuse for not getting a good night's sleep. There's no reason I shouldn't be able to make my 11pm bedtime and leave my to-do list's alone. Ahh, the perils of being a list maker...

Even with Deirdre being a sleepy weepy girlie whirley bear (or what have you), I find that I still have to manage my time and my expectations. Here's what typically happens: She goes down for her afternoon, 3 hour (cross your fingers) nap at say, 3pm. I think, "Oh, fabulous. I'll just check my email before I take my nap." Then I think, "Great. I still have 2 1/2 hours before she wakes up. Maybe I'll do 'X'". And then "X" becomes "X,Y and Z." Before I know it, I have less than an hour and a half until she wakes up, and that's if I'm lucky! So, 1) I have to learn to take my nap first. Maybe my nap should be the "X" on my to do list.
Second - here's what typically happens when I DO lie down to nap. I think, "Fabulous. I have an hour and a half until she wakes up. Please let her sleep for an hour and a half. I need just an hour and a half." And then, when she wakes up 15, 30, or 45 minutes early, I'm bummed - and I feel cheated. What I need to do (in addition to item #1 mentioned above, of course), is 2) manage my expectations and think small. She's taking baby steps, so why shouldn't I? Instead of thinking in this all-or-nothing hour and a half increment - I should ask for 15 minutes to begin with. Just let her sleep for 15 minutes while I lie here and rejuvenate. And then once that increment of time goes by, think, "I would love another 15 minutes...and so on." That way, I won't be disappointed when I fall off to sleep and wake up, say, 45 minutes later because she's awake. Odds are I can get a good amount of sleep, and I truly believe that my body rises to the occasion and says, "Alright - it's time to power nap, because we may only have 15 minutes." It works, which is pretty amazing.

So here's to learning to manage myself - my time and my expectations - effectively so that I keep up my strength, stamina, and health for that little lady of mine. Here's what Deirdre looks like when she doesn't get her nap, so you can imagine what I look like when I don't get mine!

Monday, June 8, 2009

Positivity, harnessed

So you know the recent swelling I talked about in Friday's post? It's gone - completely! We went away for a few days after I noticed the swelling, and over the course of our relaxing, restful vacation - I watched as my swollen finger returned to normal. Watching the progress was amazing...with every hour of sleep, the swelling got better. Literally. After my first 3 hour nap...the swelling was down considerably. After my next 2 hour nap (same day), more progress. After almost 11 hours of sleep that first night (because Johnny got up with Deirdre and I slept in until almost 10am), the swelling was almost gone. The joint pain in that finger was still there...but it was such a relief to see my finger look normal again. By the end of our trip...the pain was gone, too.

It's amazing the cause and effect relationship that exists between stress-free living and disease inactivity. I was hyper focused on relaxing, and it worked. But staying attuned to my body made me realize just how anxious a flare up of lupus symptoms makes me. My initial reaction when I have any sort of flare up? Here we go again. I instantly prepare myself for a handful of swollen joints. I think of how adversely affected my activity level will be, how my ability to care for Deirdre will be hindered, and how my to-do lists will become more difficult to accomplish.

I then remind myself to stay positive (because that helps cancel out the nervousness), and to focus on the fact that one swollen finger doesn't have to lead to 10. This positive approach is paramount to my recovery - without hope, I don't do very well. Of course, this optimism has a catch. I have to be very careful not to fall into my old trap of being too positive (i.e. convincing myself that I can fight this thing by just continuing to carry on as I have been). I have to find just the right combination of thinking positively while reminding myself to be realistic. That is - that sheer willpower isn't go to reduce the swelling. Rest, relaxation, a clear head, a good diet, limited sun exposure (and, of course, my prescribed medication) are the keys. Guess that's why I devote a section of my book to Optimism. It can be a tricky attribute to deal with - especially when you're, well, an optimist!

Friday, June 5, 2009

Not so fast...make that 6 weeks.

I guess I got a little ahead of myself in Monday's post. Turns out that my doctor found traces of protein and red blood cells in my urinalysis from my appointment last week - so instead of 3 months, I'm going back to the doctor in 6 weeks. Bummer!! I was so proud of the fact that I was going to go so long between appointments - an indication, I thought, of how well I was doing.

Truth is, I kind of expected my test results to reveal a little disease activity (and, in this case, possible kidney involvement, which I've had many times before.) I've been running at full speed the last few weeks - the excitement of my book coming out, the book signings sprinkled here and there, and all of the "to-do's" that I've convinced myself have to be done pronto - all of which have caused me to skimp out on my rest. I noticed one of my fingers swelling just a bit about a week or so ago...but I'd convinced myself it was because I'd exercised outside in the heat, or from too much salt in my diet. In fact, I didn't mention it to my husband because I figured it wasn't anything to be concerned about. Boy, was he upset when he found out I'd sloughed off a swelling digit! And you know? He was right to be peeved. Just like that, I had slipped back into that familiar phase of ignorance that I've been guilty of in the past. Don't want to admit the disease is afoot? Just find something else to blame it on. Ugh! I'm so predictable! I suppose the three-prong approach I mentioned on Monday won't just be something to consider over the next few months. It's now become a must. At least I prepared myself to adjust.

As far as the kidney involvement goes - this is how the routine has gone in the past: a trace of protein shows up in my urine (indicating that my kidneys aren't filtering properly). I do a 24-hour urinalysis to determine if this, in fact, is the case. If it is, we up a medication slightly, and then I get retested soon after that to see how things are going. And, yes, I usually have to curtail my activity level at the same time. I find that reducing stress and fatigue make just as much of an impact as increasing a medication.

I'll be sure to keep you posted!

Monday, June 1, 2009

3 months...a personal best!

That's right -at the end of my rheumatologist's appointment last week, my doctor declared that my next appointment would be...drum roll please...3 full months away! Yippee! I've been to the doctor as frequently as every 2 weeks (for months at a time) and as infrequently as 8 weeks, but never 3 months. How psyched am I! What am I going to do with all my free time?

Uh oh. I just realized that with that kind of attitude (the Seek and Destroy-Accomplishmania attitude), I'm going to land myself right back into a mini flare...which would, no doubt, result in, you guessed it, more doctor's appointments.

So I suppose my goal should be to stay healthy enough to keep my appointments 3 months apart. Alright - so if that's my goal, what are the three action items I need to do to make that happen?

1) Nap every day - no less than an hour and a half each day. I've just started a new napping strategy, and it seems to be working. Here it is: if I haven't started a nap by 3:00pm, then I'm not allowed to leave the house (to run the countless errands I have on my to-do list). I have to stick around so that I can fit in a full hour and a half nap before my babysitter leaves at 5pm. Last week, I had to totally revamp my plans every single day, (because I ALWAYS try to fit in more than I can accomplish on any given day), but I had my nap. And I felt wonderful.

2) Go to bed each night by 11pm. Oooh - that's a tough one for me. Not impossible, but very difficult. Right around 10:15pm each night, I think of about 29 loose ends that I want to tie up before retiring for bed. I usually end up falling into bed just before midnight. (Note that Deirdre doesn't get up until after 8am most mornings...so I'm still getting 8 hours. But I actually need 9.) Maybe I'll employ a trick I suggest in my book - I won't start by knocking off a full hour of sleep. Rather, I'll just shoot for 11:45pm for 3-5 nights in a row. Then, I'll go for 11:30pm for another 3-5 days. If I continue to shave 15 minutes off of my bedtime each night, within two weeks, I'll have reached my goal. And my loose ends won't have unraveled, I'm sure.

3) Engage in a relaxing activity at least three times a week - that could be taking a walk with Darwin (remember - he's a pug, so there's no sprinting involved), painting my toenails, or asking Johnny to practice the piano while Deirdre and I just sit and listen. Taking time out for myself (and spending quality time with my family) keeps me balanced, happy, and healthy. That should keep me out of the doctor's office, don't you think?

If you have any tips for living well and keeping your doctor's appointments spaced out - let me know. I'd love to hear from you!