Saturday, February 28, 2009

What I Realized in Yoga Class Today

Having indulged in bad diet and exercise behaviors for the last two weeks, I made a pact with myself to return to the positive ways of dealing with stress I've used for the past year. As a start, I went back to yoga class this morning. It was a good, sweaty hour. Missy, the retired Navy Captain who is our instructor, decided to focus largely an area where I am particularly challenged--the balancing poses. I can work the "strength" poses--Warrior I, Warrior II, Plank, Cobra, etc. It's just a matter of gritting it out and relying on the muscles I've always relied on. But in the balancing poses--Tree, Eagle, Warrior III, Dancer, Half Moon--"big muscle" strength alone won't cut it. You need all the little muscles, you need continuous focus, and you need to control without over-controlling to master these. You can't let your mind wander, you can't overthink, you can't take the time to compare yourself to your fellow students. Do any of these things and you will fall out of the pose. You have to be present in these poses moment to moment.

Not to get too metaphorical, but it made me reflect that while strength will certainly be needed in the coming months (and years), balance will be just as important, and balance is lot harder to achieve and maintain.

Post-posting note: as a little lagnaippe (as us folk from Louisiana like to say), I found the following link to help you visualize the "Bone Marrow" story a little better. Enjoy!

Friday, February 27, 2009

The Bone Marrow Sample Story

Nothing new on the medical front today. Robbie was home from school again and fighting a bad cold. Liz and I were going to swap working from home, but she had a pop-up afternoon meeting, Robbie was being a sweetheart, and I actually got in a rhythm and got a lot of work done at home. I stayed with him all afternoon. This evening, I went to Target to buy a couple things and got a surprise and very welcome phone call from Jay Ardillo, my best friend in high school. Jay had heard about my situation and got my cell phone number from Mom. We spent 45 minutes catching up.

So in lieu of any new medical news, I thought I would share the story of my marrow sample, which would have been much more funny, except that it was happening to me.

I went into my first meeting with my oncologist Dr. Kelly, determined to move with what the reading called "deliberate haste". In other words, I planned to move quickly, but always with knowledge of what I was doing and why. One book stressed that before any agreeing to any test, you need to understand what the test is, why the doctor wants to do it, and what you hope to learn. In fact, among the questions I brought to the first interview was "What further tests do you recommend and why?" I thought this would cement my "deliberate haste" credentials.

We got to "tests" question, and Dr. Kelly said, "Well, I think we will want to take a bone marrow sample soon." Wait. Stop. Bone. Marrow. It seems like a fine idea, but unfortunately I usually keep my marrow ON THE INSIDE OF MY BONES! I couldn't imagine an comfortable scenario that included an intra-bone spelunking expedition.

Dr. Kelly, unaware of my inner dialogue, continued, "It's a shame, because the guy right before you--you probably passed him in the waiting room--has a condition almost identical to yours, and we just took a sample from him. We Fedex-ed it out to California for analysis."

The only guy I remembered from the waiting room had been grimacing through pain as he tried to put on his coat.

I was sitting there considering my close brush with marrow harvesting when a nurse stuck her head in the door to ask a question. After answering, Dr. Kelly asked his own, "Nurse Johnson, has the Fedex guy shown up yet?" "No Doctor, he's not coming for another 45 minutes." "Oh great!"

With that, I was basically yanked from my chair and herded toward the procedure room, wailing "Deliberate Haste!" all the while as they dropped my trou, laid me on my right side on a gurney, and draped my more delicate regions. Turns out they take the sample by stabbing a knitting needle into the point of your hip bone. I prepared to be brave. I did NOT look at the needle.

The shots to numb the area felt like hornet stings. I wanted shots to numb the shots that numb.

Full disclosure: those lidocain shots used to numb the area were by and far away the most painful part of the procedure. There was considerable pressure as Dr. Kelly was taking the sample, and one or two "hoo-ya" moments, but all in all it really wasn't that bad.

Afterward the nurse showed me the sample. She pointed out to me that it was red, not white. I guess she was working on some instinct that said I would enjoy seeing my various internal fluids on display. Thanks, no.

The next day it felt like someone had stuck an F-ing big needle in my hipbone, a feeling that all but disappeared over the next three days.

There, the story of the marrow sample. Good night, all.

Personal note to Louise: Thanks for the comments and please keep them coming. I'll call you soon.

Thursday, February 26, 2009

Robbie, and the NIH

Robbie may be picking up more of this than I imagined. We haven't gone out of our way to "hide" anything from him, but at the same time we haven't been particularly explicit. Robbie just knows that Daddy is a little sick, that he's going to have to take some medicine that might make him tired, but that Daddy's going to be OK.

Tonight, while riding home with Liz, he apparently got upset and asked "Is Daddy going to go to Heaven?" He knows that Mom-mom (Liz's mom) and Pa-Paw (my dad) both have died and are in Heaven. We've assured him that Daddy's going to be just fine, but I always have to remember that he hears a lot and understands more than I think.

I'm just hoping he's not psychic.

On a more positive note, Dr. Kelly called and told me that a colleague of his working for the National Institute of Health is interested in talking to me about a lifestyle study he'd doing (I don't have the doctor's name in front of me just now). According the lady I talked to at NIH, there is no treatment involved in the study, which begs the immediate (and selfish) response "Why bother?". I realize though that it won't hurt me, it might help someone else, and (again on the selfish side) it's probably not a bad contact to make. I will definitely listen to what they have to say.

Sometime soon I want to capture the story of my marrow sample for posterity. It would be a really funny story if it had happened to someone else. I hope you'll enjoy it.

Thanks for reading,


Wednesday, February 25, 2009

Second Visit with Dr. Kelly

Well, I now know my dance partner. More on that in a minute.

Today's big surprise was that Robbie didn't have school. Liz was dropping him off so she found out first. I took custody around 11:00, and took him with me to the oncologist's, where Liz was meeting me.

We decided to bring Robbie into the appointment, where he was an absolute angel. It was a little surreal bringing my 5-year-old son into meet with my oncologist. At one point, as we were discussing particulars, Robbie looked up and said, "Daddy, I'm sorry you have a cold." Sweet. Anyway, cutting to the chase...

The unequivocal diagnosis is CLL--chronic lymphocytic leukemia (Apparently, the same disease as diffuse small cell non-hodgkins lymphoma, but the acronym is much easier). It's in my lymph system, my marrow, and my bloodstream. I wouldn't be surprised to hear it's in my breakfast cereal.

Today's diagnosis doesn't change the treatment plan, but it does add a bit (but just a bit) of urgency. I have an abnormal protien called ZAP 70 that indicates that of the varieties of CLL, this is a more aggressive version. Dr. Fritz said "This is not horrible news", but does define a little better what we're dealing with.

He is suggesting a chemo treatment known in the business by the acronym FCR, which refers to the medicines that are used. This is apparently not particularly vicious as chemo treatments go, and I may even get to keep most of my hair (although I may shave it just for the sympathy).

I'm still going to wait until I see Dr. Cheson at Georgetown and do some more of my own research before I make a final decision on treatment, and Dr. Kelly thinks this prudent. If Dr. Cheson also recommends FCR, I'll strongly consider doing it here in Southern Maryland.

Robbie and I came home, played some golf in the front yard, and just returned from a walk on an absolutely beautiful day. I am blessed.

Tuesday, February 24, 2009

Posting Comments

For Louise (see first post): I think I fixed the "comments" issue. Try again if you like.

It takes 21 days to build a habit

Nothing new or earth-shattering today--just trying to get in the habit of logging each day.

I've been amazed by the number of people who responded to my "coming out" email with personal stories of cancer survival, either theirs or some one they loved. Others have provided research leads and names of friends. I am truly blessed.

I have an appointment with Dr. Kelly, my local oncologist, tomorrow at 12:00, so I should have a good first "technical" post tomorrow.

Got to go pick up my son, Robbie, from daycare.

Monday, February 23, 2009

My Coming Out Message

For posterity, here's the email with which I announced my affliction to friends, family, and colleagues. Some of it will only make sense to an inside group--my apologies. Feel free to pirate if you like.

I'm sending this because I wanted you to get this information from me, rather than from the rumor mill.

Last week, I was diagnosed with diffuse small cell non-Hodgkins lymphoma, which sounds more like something you'd order at Starbucks than a form of cancer. Sadly, it's not. Now, of all the things with which I could have been diagnosed, it ain't the best, but it's far from the worst.

My oncologist (now there are two words I never wanted to string together) feels we can easily beat this into remission, and I've been accepted as a patient by Dr. Bruce Cheson at Georgetown University's Lombardi Comprehensive Cancer Center, one of the top three researchers in the country on my particular flavor of lymphoma. One of his other patients is former Senator Fred Thompson.

I anticipate starting chemotherapy in the very near future, and have been told that I can anticipate a fairly normal work schedule. It's likely I'll go in for treatment for a few days every three to four weeks for the next six or so months. Once we get this into remission, I'll be on a monitoring program.

There's no reason with a little luck and a lot of care, I can't live with this for 20 or 30 years.
For the 4.0 Level 2's, I've discussed this with Mr. McCurdy, and we're going to work to minimize any impact it might have on the Competency.

Feel free to share the news with anyone who you think might want to know.
(Please give me the name of anyone who seems happy to hear it.) My apologies to those whom I have forgotten to include on distribution.

And for the NAVAIR crowd, this does NOT constitute proof that Command Staffing causes cancer.

I'll keep you posted.

Welcome to My (New) World

All blogs have to have a first post. This is mine. I'm starting this blog because my dear, wise friend Louise Baca threatened me with physical harm unless I started a blog. I was recently diagnosed with a flavor of non-Hodgkins lymphoma and Louise told me that a blog can be very theraputic, both for the patient (moi) and those folks who might be interested.

I am following Louise's advice, because:

a) Louise is a oncological clinical trials nurse working on her PhD, so she knows her stuff, and
b) Louise hits harder than any woman I've ever known in my life, so I take her threats seriously.

This one's for you, Weez. More to follow.