Friday, May 30, 2008

Thank goodness for health insurance

The big bills are rolling in.

Room and board for my three nights totaled more than $9,000. Patient responsibility: $0.

Labs were more than $3,000. Patient responsibility: $0.

Surgery hasn't yet arrived.

I am truly grateful for health insurance. Specifically, Abel's health insurance. As a part-time, hourly employee, I have no benefits. Zip. Zero. Nada.

Here's the text of an e-mail I sent to the President and the CFO of the organization Abel works for last week.

Dear X and Y,

Earlier this afternoon I received a phone call from a care representative with our health care insurance. When I answered the phone, I readied myself for a billing issue but was pleasantly shocked to find they were just calling to check up on me after my hospital stay and to let me know that they were there with additional resources should I need them.

After their phone call, I felt compelled to write a personal note to you to thank you both for the excellent health care you provide to your employees. Of all the things which crossed our minds during this ordeal, never once did we have to worry about our health insurance covering whatever treatment options are recommended.

In a previous job, I served on the staff health benefits committee and that experience gave me a more clear understanding than many about the costs involved with providing such excellent health care options to a relatively small organization. And, I certainly understand the fiscal challenges of running a successful non-profit.

I imagine that making the decision to invest in health care for your employees has been a sometimes hard decision to balance out with many other areas. Thank you both for making the decisions you have to provide your employees and their families with excellent health benefits.

I know you do a lot for employee morale and certainly the parties and fun days get the spotlight, so-to-speak, but I just wanted to write to share my heartfelt appreciation for this other, very critical, way that you put employees first.

In appreciation,

Smiling Mama

Thursday, May 29, 2008

Father's Day Gift Idea

Pssssst. Father's Day is right around the corner.

I have an idea for you.

This is the best present I've ever gotten Abel. At least, it is the one that has gotten the most consistent use and come in handy for many, many projects.

It is a flashlight you wear on your head.

I bought it here.

There are many, many other versions you can puchase at many, many other locations.

Seriously. I can't tell you how often this baby is strapped onto Abel's head. Basically every single home improvement/car/anything project and he's wearing it.

So, go buy one for your dad/husband/father-in-law. If he is the least bit handy (or tries to be the least bit handy) he'll love it.

I promise.

Wednesday, May 28, 2008

And some light fun to balance it all out

This weekend Lucas and I went to visit my parents so Abel could continue working on our bedroom.


I didn't tell you that before this whole crazy illness thing happened we had crammed all our bedroom furniture into the guest room so we could finally make something respectable out of our room, the last room in the house (other than the kitchen which is a whole other story) to see a paint can or anything at all decor-wise? And the project which already was larger-in-proportion than I wanted it to be has grown in scope? Yeah, so much fun.


We left to come back home Sunday evening about 7pm. Lucas was bathed and in jammies and I anticipated he'd conk out and sleep for most of the drive home. Then, it would be a seamless transfer to his crib and we'd be all set.

Boy was I wrong. But, in a good way.

It was one of the most entertaining 2-hour car rides of my life. Seriously, he was awesome company. We spent about an hour pointing out all the various farms (cows!), trucks, water towers, radio towers, etc. that we passed. He pointed out as many things as I did, "Look, Mama, that crane is holding a flag!" And his newest obsessive question, "What is that?" was out in force.

Then, he spent a solid half hour pretending to be different animals. I'd appropriately freak out about how in the world DID A ROOSTER GET IN THE CAR, which earned peels of laughter from him before he'd finally admit, "Mama, it is just me, Lucas!"

The absolute best part, though, was right after we hit the beltway. I turned on the radio and Truckin by the Grateful Dead came on. Almost immediately, Lucas started rockin out. He was singing at the top of his lungs (all sorts of non-sense words/lyrics) and pumping his fist in the air. He did this for the entire song! I was trying desperately to sing along, too, but literally couldn't hear the words above him so I ended up just giving a few "woo-hoos" and "yeah, mans".

Forget Jose Luis Orozco, we need to put more Jerry on this kid's play list.

Tuesday, May 27, 2008

Brief medical update

Sorry for the lack of posting lately. I do have a new post up at DC Metro Moms about my wonderful, wonderful town. I know many of you are interested in my health and so wanted to give a brief and hopefully not too boring update....

I tried desperately to get my very cool platelet count bar graph in here but can't get it to upload as an image. So here's the poor man's version in text.

Basically a normal person (e.g. you) has a platelet count of 150,000-300,000.

On May 6 my platelet count was less than 4,000 (I believe that is the lowest possible count.) This is freak-out mode; risk of spontaneous bleeding in the brain, etc.

In the hospital on May 8 my count had gotten up to 67,000. Woo hoo! Okay to proceed with surgery for the lymphectomy and bone marrow biopsy.

On May 15 completely pumped up on steroids and other meds: 147,000.

Last Thursday, May 22, for my weekly check-up I was down to 57,000. So disheartening. This means the steroids aren't doing their job. I'm 'roid ragin' for nothing.

So, Friday I went in for the first of four infusions of this medicine called rituximab.

This morning: 72,000. Okay. Up is good.

Friday I'll have my next blood tests and another round of rituximab. I'm really keeping my fingers crossed they will also decrease my dose of steriods. Otherwise I'm going to look into bodybuilding as my new career pursuit.

True Community

Two weeks ago I wasn't feeling very well. I went in to see my primary care physician and he did a blood test. First thing the next morning he called, and with deep concern in his voice, told me to go to the nearest emergency room immediately. After many days of worry, lots of tests and a surgery, I'm now home and recovering.

A big part of my speedy recovery has been the warmth of the community I came home to. I'm convinced that our town is the best place in the world to raise a child

The night after my mom left, my husband ran into a neighbor at the grocery store. He must have looked a little overwhelmed. Just hours later, that neighbor called to let us know that she had sent a few e-mails and lined up meals for us for the next 10 days!

On night three of delicious dinners, a couple brought over pie and ice cream, explaining that they tried to get on the dinner list but it filled up too quickly so they thought they'd bring dessert. Countless moms have offered playdates; several have offered grocery store runs; and, one mom home on maternity leave with her second child offered up an afternoon of errands.

It is truly overwhelming to be the recipient of such generosity.

But, not surprising. I've seen it all before. You see, this is what Cheverly is all about.

When a baby is born or an illness occurs, people bring food. Need something? No matter how obscure, simply ask. I've seen requests--requests for everything from an extra carseat to one of those high toilet for a visiting grandparent--fulfilled in minutes.

We truly are a community, a community of people who care about and for each other. When I think about the best place in the world to raise a chid, I know we are there.

Original post to DC Metro Moms. Read more about Aimee's life with her toddler at Smiling Mama.


Caitlin said...
Glad to hear you're recovering and you have such a great neighborhood to help out when you need it.

I grew up with that type of neighborhood, but our HOA has killed all sense of community. People are too busy ratting each other out to the management company over stupid things like "volunteer trees" in the driveway instead of just mentioning to their neighbor. It's nice to see that there are still "good neighbors" out there.

Kimberly said...
My mother and father both grew up in Cheverly. I went to my K & 1st grade there as well. It is a great place, indeed! :)

Leticia- Tech Savvy Mama said...
Glad to know you are ok! It is so rare to find a wonderful neighborhood with a great sense of community. It is such a relief to know you have help from those who are close but if you find yourself needing anything, please send me an e-mail!

Andrea said...
Glad to hear you are getting better. Good neighbors are priceless.

Nicole said...
Happy you are okay...

and have great neighbors :)

Original post by Smiling Mama. Thanks for reading!

Wednesday, May 21, 2008

My stint as a speechwriter

It’s Commencement-time across the country and famous and not-so-famous people are addressing the nation’s Class of 2008. This morning as I was driving into work, there was a short story on NPR about Maria Shriver putting an Obama sign on the front lawn of their California home and Arny following suite with a McCain sign.

It reminded me of one of the most exciting experiences of my life.

It was Commencement 2004 and I was working at a local university. My department had the unlucky task of working commencement every year (which also always fell on Mother’s Day), handling the VIPs, press and other behind-the-scenes details. That year my sister was graduating from the same university so I was technically excused from working. However, my boss did offer me one opportunity, for which I will be eternally grateful.

You see, two people receiving honorary degrees that afternoon were Sargent and Eunice Kennedy Shriver. Two of my heroes. Knowing what it would mean to me to meet them, my boss offered me the opportunity to “staff” them that morning. Of course I jumped on the opportunity.

Mr. Shriver took most of my time and attention. I knew he was suffering from Alzheimer’s but was surprised at its toll. He was amazingly kind, personable, funny and attentive to me, but also asked the same things over and over again and needed constant attention.

Mrs. Shriver was perhaps the most elegant person I’ve ever encountered in real life. She was very kind but also quite reserved.

At one point, however, Mrs. Shriver asked me to go over her speech with her. We sat down and she started reading it quietly to me. She began, “Throughout my life I’ve been known as many things. I’ve been known and John’s sister and Bobby’s sister and Ted’s sister. I’ve been known as Sargent’s wife. Now, I’m best known as Arnold Schwarzenegger’s mother-in-law.”

I know it is rude to interrupt. But, I just couldn’t help myself. I quipped, “But you’re still a Democrat!”

Laughing she said, “That’s a great line!” and proceeded to hand-write it into the speech!

Minutes later I was standing back stage as she addressed the crowd and when she got to my line the crowd went wild—laughing and cheering. I was beaming.

Due to the length of the ceremony and their advanced age, Mr. and Mrs. Shriver left the stage immediately after receiving their degrees and giving their remarks. As I escorted them out of the building and into their waiting car, Mrs. Shriver thanked me for the great line.

It really did make the speech.

And, it was one of the best moments of my life.

Monday, May 19, 2008


Today I showered before noon, dried my hair (sort of while not moving my left arm too much) and applied make-up. I took Lucas to his babysitter and went to work for five hours. I've started my return to normalcy.

And it is weird.

My sore arm/incision area is my reminder that things aren't normal. And, I don't know if I'm ready for them to be normal. What is normal anyway?

I need to tell you my story. To tell you about all the thoughts and feelings I had in the hospital and at home. But it is so overwhelming. And, there's every day to keep thinking about and writing about, too.

I mean, yesterday Lucas realized I was a girl.

He was telling me to sit down because I was a "bad boy". (Waaaayyyy past his bedtime and he was very grumpy.)

Abel said, "Lucas, Mama is a girl."

"A gir-rel?" (I'm really bad at phonetic spelling, but think rhymes with squirrel if you make squirrel two syllables)

Yes. A girl.

Then, the rest of the night Lucas called me "gir-rel Mama".

Very cute.

And normal.

And I want to tell you these stories. But I also want to tell you about how that first night in the hospital. I didn't sleep. Not a wink. Well, maybe 20 minutes. I was drugged up and my body was totally relaxed but my mind, it was racing a million miles an hour. And I composed the most beautiful perfect tell-the-Internet-I-have-cancer post. And I realized why I love to blog. It is because composing (no matter if it actually gets typed or written) is how I organize my thoughts. I've always done it. The many late nights I've spent tossing and turning composing complaint letters in my head. Or, love letters. Or, wonderfully creative stories. Or, the perfect most masterful fundraising letter in history (did you know that's my day job? non-profit fundraising?).
You know what else I composed that first night?

Cancer comic relief posts.

Yeah, I had this perfect one all lined up in my head for July. Remember July? When I cut off inches and inches of my beautiful long hair to donate to Locks of Love? Well, as far as I was concerned that night, I had cancer and so would be starting treatment soon and that would mean that chances were pretty good that this July I would be bald. How's that for irony? Oh, yeah, and I'm MoH in a wedding in July, too. That night I was shaking my fist at karma, I'll tell you that.

So this isn't my tell-the-Internet-I-have-Cancer post and it isn't my comic relief post. What it is, though, is the start of getting back to normal. So bear with me if I ping pong a bit between the mundane here-and-now and the hellishness of the past two weeks.

Friday, May 16, 2008

All clear

Still a mystery. But no cancer. Woo hoo!!!!

Wednesday, May 14, 2008

I'm here

Here. I'm home. I'm back on-line. But, not myself.

Two weekends ago we went away for our anniversary. It was such a great time and I was looking forward to telling you all about it...the rest and relaxation, the spa, the meals, the wine, the lilies of the valley growing outside our room.

But that Saturday night I wasn't feeling very well. It only got worse. Such that Monday morning I made an appointment with my primary care doctor. Before my appointment my nose bled for 3 hours without stopping. That on top of the strange rash all over my torso and my fatigue and my doctor ordered a blood workup. Call Tuesday around 10am for the results, he told me.

Instead the phone rang at 6:30am (which we didn't hear) when the first person arrived in the office and saw the test results. My doctor called as soon as he go in at 8am and very seriously told me that I had to go to the nearest emergency room immediately.

Normal platelets are 150,000-300,000. Mine were less than 4,000.

There is serious concern for spontaneous bleeding. This is very dangerous.


We got Lucas dressed; took him to daycare and drove to an ER (note to self and others, when you live in an area with many hospitals, might be worth giving some consideration in advance to which one you'd choose if you had a choice).

The rest was both the longest and shortest minutes and hours and days of my life.

Officially admitted; diagnosis: ITP; residents and interns and medical students troop in and out to see my rare rash; CAT scans because of a headache and an enlarged lymph node; ER doc tells me that I might start hearing the word cancer because there are many abnormal lymph nodes; I'm a mystery "residents love mysteries"; move into a real room (after 12+ hours in the ER); spend first night in the hospital; spend next day feeling pretty good; spend next night; platelets are going up; surgery--lymph node removed and bone marrow taken; spend another night; platelets up into normal range; initial pathology shows no malignancy; you can go home.


The initial look at my lymph node and bone marrow showed nothing abnormal. I can't quite wrap my head around it. We'll know for sure tomorrow when I go in for my follow-up and the full pathology report.

In the meantime, I'm exhausted just writing this so have to sign-off.

Just wanted to let you know, dear internets, where I've been. I'm been thinking of you, I promise. Do me a favor and think of me tonight and tomorrow. I really need that final pathology report to be clean.