Mind Games

It was a beautiful day here today--temperature in the high forties, blue skies with a couple of clouds.

Liz had a dentist appointment in D.C., so Robbie and I were bachelors this morning. We had a bit of a lash up this morning, when his need to watch Spongebob trumped my ability to get him out the door in time for me to go to my Saturday yoga class. If there hadn't been a hard schedule, I could have worn him down, but we had to leave NOW if I was to make class on time. Best I could have hoped for was NOW + 5 minutes. My fault for waiting until the last minute to get him ready, and for not being the type to yank him off the sofa with the "Because I'm the Daddy and I make the rules..." speech. So I missed my class and was pissy most for most of the next hour.

Instead--after Spongebob--we went to Target to buy a new showerhead for the guest bathroom, stopped at a local pizza parlor for lunch, then on a whim went to WalMart and bought a kite. We went to the local kite field (for the locals, it's on your right as you cross the bridge into Solomons Island, next to the beautiful farm) where we flew our kite in the puffy winds.

Through it all, I felt a little tired. I took a nap when we got home. Here's where the mind games come in. Before, I would have attributed the tiredness to the long week I had and the five hours of sleep I got Thursday night. Now I'm asking, "Is this the CLL? Is this the fatigue that until now has been missing? Am I starting to show symptoms? If so, why? Is this getting worse? Did I wait to late to start Chemo?" It's probably a silly set of questions, but they're still on my mind. I'll let you know how I feel tomorrow--Liz has to leave early tomorrow morning for a business trip, so it's me and Robbie alone until late Monday night. I hope this is just normal tired, because it was too easy to be cranky today.

Meeting with Dr. Cheson and Company

Here's an Executive Summary: I thought today was an extremely positive day. I met with Dr. Cheson and his staff. The original diagnosis of CLL seems to have been confirmed. I have been offered a spot in a clinical trial Dr. Cheson is conducting and am stongly inclined to accept (motivated largely by my fear of Nurse Baca, alluded to in my very first post). I will almost definitely be going back next week for baseline tests for the trial, including another MARROW SAMPLE!!!!! YEAH!!! The actual Chemo would begin the following week.

Here's the longer version:

I left Jim and Elena's around 7:05 and arrived at the Georgetown Hospital complex by 8:00. The nav system in my Mini Cooper brought me in perfectly, so now I know that I can get there. This is important, because it looks like I'm going to going there a lot. More on that in a few paragraphs.

The staff at Lombardi was unfailingly competent, professional, and positive, starting with the lady at the reception desk all the way up to Dr. Cheson himself. (Side note: the "Lombardi" for whom the Lombardi Center is named is in fact the legendary football coach, Vince Lombardi. There was autographed paraphenalia and other football momentos in the lobby.)

I first met with Dr. Cheson's nurse-practitioner Katherine Niknia, an extremely personable young woman. She took my medical history, then gave me a much more thorough examination than I got in Southern Maryland. She checked pretty much all the lymph nodes she could get to, measuring and cataloging the really impressive ones. After she was done, I met with Dr Cheson himself, who was really a great guy. He pretty much repeated the same examination done by Katherine. I know it's wrong, but I enjoyed the examination better when conducted by the attractive young woman. Does that make me bad?

I don't know whether to be happy, proud, or scared, but I managed to impress even Dr. Cheson with the extent of the involvement in my lymph system. He used me as a training aid to show Katherine some enlarged nodes that you normally don't normally get to feel on actual patients.

Anyway, he confirmed (pending the results of the tests on the half pint of blood test I gave today) a diagnosis of CLL, and confirmed that we want to get started treating this. He also offered me a spot in a clinical trial he's running, which I will almost definitely accept.

The clinical trial is being coordianted by Damiet Smit and overseen by Dr. Cheson. The trial will run for about 12-13 months.

The trial takes the current gold standard treatment, FC (I'll fill the drug names in tonight), and adds a new drug called Revlamid. Apparently, 30%-40% of patients do not respond to FC with full reversal of symptoms. Revlamid has shown great promise in cleaning up the abnormal cells missed by FC.

I called my expert, Nurse Baca, and asked her opinion. She was strongly enthusiastic, so that pretty much seals the deal.

My schedule will be something like this:

Months 1-6: 1 full day, 4 partial days once a month getting standard FC treatment, adding Revlamid. Everything at Georgetown (This is the standard treatment for CLL).

Month 7: Revlamid alone, going to Georgetown once per week for tests

Months 8-12: Revlamid alone, going to Georgetown once per month.

I'm writing this at a Borders in Fredricksburg, where I'm getting lunch on my way back to the 4.0 offsite. I'll finish up tonight.

Happy St. Paddy's Day!

Happy St. Pat's to you all.

I'm in Alexandria, Virginia, at the townhome of my friends Jim and Elena, enjoying their hospitality before my 8:30 appointment tomorrow morning with Dr. Cheson in Georgetown. I am staying in the "Taryn" bedroom, so named because it's--well--Taryn's bedroom. Taryn is Elena's beautiful adult daughter, now working in Orlando for the Mouse King, who many years ago (I believe she was either nine or eleven) made me fear physical harm from a little girl a third my age and well less than half my weight. I won't tell the whole story here--enough to say that I learned you don't wake up Miss T too early in the morning.

Earlier today I was in Richmond helping to kick off the NAVAIR Research and Engineering Group's Senior Leadership offsite meeting. Once I made sure that the Admiral was fed and that our guest speaker--the Deputy Assistant Secretary of the Navy--had his flip chart and markers, I drove up here. The drive up I-95 took me around an hour and twenty minutes. During tomorrow's rush hour, the same drive will take three hours. Hence my bunking with Jim and Elena tonight.

As I have acquired the technology to blog on the road, I'll find a Borders or a Starbucks tomorrow and give you the scoop from the Dr. Cheson session. Seeing as how it's currently 11:00 p.m., I'll close for now.

P.S. Miss Molly--so great to see you in the Friends list. It's wonderful to have you aboard for the ride. Please send me an email, as I need your address--I want to talk herbs and teas with my favorite accupuncturist. My email is at the top of the page. Love, YBLU

Friday Night Musings

Robbie saved me tonight.

Earlier, after indulging in a nice bottle of Spanish red wine, I started a self-absorbtive entry invoking the Kubler-Ross stages of grief and where I thought I really am versus where I thought I think I am, blah, blah, blah... It was truly an invitation to a "pity party".

Then Robbie came in and wanted to play cars. So we played cars and in the interim I somehow lost the piece I had started earlier. That boy is my anchor through all of this and someday I want him to know that.

ANYway, I got a call from Dr. Cheson's office yesterday--he's the Georgetown heavyweight CLL researcher who's taking me as a patient--letting me know that they needed to move my appointment from noon to 8:30 a.m. next Wednesday. This really screws up my plans for next week. Thanks heavens for Jim and Elena Bjostad, my dear friends in Alexandria, who will be taking me in next Tuesday night, so that I can make sure I'm at Georgetown on time.

Anyway, instead of the incredibly depressing Kubler-Ross track I was going down earlier, let me change course and say that I find myself thinking (but not in a depressing way) about the finite time we all have, and how it makes me reflect on the things that I want to do "some day". If nothing else, my current situation brings into sharp focus the fact that you don't get forever to do those things: to pursue your dreams; to share your thoughts and feelings with people who are special to you. I've told myself, in different situations, "I will tell (blank) that I feel (blank) some day." But "some day" was always out there in some nebulous future. Now the future is not nearly so nebulous, or as open ended, as it once seemed. Well, this my "New Years" and my resolution is to make sure that I say those things that I've always wanted to say to the people to whom I wanted to say them sooner rather than later.

So let me start by saying to all of you who read this blog, "Thank you". I am awed and honored that you care enough to spend time reading my ramblings. Thank you for caring about me. Your thoughts and support mean more than I can say. I've said it before, and I'll say it again, I am a blessed man living a blessed life. You--you sitting there reading these words--are part of that blessing.

P.S. A particular "Thank You" to fastcobra, shorty, and subjack. I have no clue who you are, but thanks for stopping in. If you feel compelled, drop a comment on this post and reveal yourselves, or send me an email at timothy.mcmichael@navy.mil. If not, I do love a mystery.

"Why aren't you mad?"

You gotta love March. Less than a week ago, I was camped out in my "no electricity" living room, huddled around a fireplace on a 9 degree night; tonight I went for my evening walk wearing a thin white t-shirt. It's about 65 degrees out, which will seem a little chilly next October, but feels like the French Riviera tonight. While walking I talked on the phone with my mom.

Mom (and please don't wait to get cancer to start talking to your mom on a regular basis) is mad at my family doctor. She's mad because he blew it--I showed him what turned out to be swollen lymph glands at my annual checkup eight months before this sleigh ride began. I went untreated for two-thirds of a year after I should have been diagnosed. Mom's mad and we've talked a couple of times about why I'm not. It's come up enough that I thought I would share.

I'm not mad for a couple of reasons.

First--as polyanna as it is to say--it would be a waste of emotion and a waste of energy to allow a place at the table for that kind of anger. I'm sure there are times when anger at another can be a powerful survival tool (think Clint Eastwood in "High Plains Drifter"), but not when your real 'enemy' is inside your own body. I need my energies channeled into more productive outlets.

Second, I truly believe I'm now in a lot better place to deal with this disease and treatment--and to deal with my future--than I would have been eight months ago.

If I had started Chemo last May, I'd be done now. But I wouldn't have started practicing yoga, and I believe yoga is giving me powerful tools to get through the next several months of Chemo. More importantly, I believe it will help me tremendously in dealing with the emotional challenges inherent in living with CLL for the rest of my life.

I started taking yoga classes last spring, just a few weeks after my physical. Largely through yoga, I lost another 35 pounds and got into the best shape I've been in since we moved to Maryland. I also have begun to discover the spiritual side of the practice. It has given me glimpses of a steady, calm harbor in a sea of emotion and fear. I can only hope that as my practice grows deeper, that calm will spread.

So maybe Dr. X was supposed to misdiagnose the lymph nodes. Maybe he didn't find the cancer because I hadn't yet found the tools I needed to meet all the challenges that this will bring. He didn't find it, because I wasn't ready for him to. I can't be mad at him for that.

CLL Info from the NCI

Short one today, following up my self-recommendation to use this time to get smarter.

Here's a link the National Cancer Society's info page on my new friend, CLL.

http://www.cancer.gov/cancertopics/pdq/treatment/cll

Quick update. Just got off the phone with a rep from the National Institute of Health. They are conducting a study and trial being run by Dr. Gerald Marti that's testing a certain Chemo combintation (FR) and have offered me a spot in that study (or 'protocol' as it's known in the business). I currently have an appointment with them on the 26th of this month.

A quick Google scan shows that Dr. Marti works (or at least worked) for the Food and Drug Administration. As I was following the Google trail on Dr. Marti, I came across what appears to be another good website: http://clltopics.org/index.php. Thank God for the Internet.

Any decision will hinge on the recommendation of Dr. Cheson at Georgetown. If his recommendation matches that of Dr. Kelly, I'm really tempted just start (see last post). I'll research and solicit opinions from my key advisers (you know who you are), then get this train moving.

Waiting

We lost power just before midnight when the snow got heavy Monday night and just got it back yesterday evening (we lived through the 9 degree night by camping around the fireplace.) As such, I haven't had an opportunity to write, but it strikes me that until I start Chemo, there's not that much to write about. And I won't start Chemo until after my appointment with Dr. Cheson on the 18th.

This waiting is strange--I can only relate it to being in the "marshall" stack while waiting our turn to land on the aircraft carrier back in my flying days. "Marshall" is where, at night or in bad weather, planes stack up at 1000' intervals, waiting to fly into the ship and land. Psych studies have shown that this is the most stressful phase in carrier aviation, more than landing on the boat, more than being shot at in combat. At least in those situations, you are doing something. In marshall, you're just circling in the dark or in the clouds, thinking about landing that big plane on that tiny, moving runway.

As I sit here--waiting--knowing that, however slowly, the cancer is progressing, everything inside of me screams to get this thing going. I want to start Chemo NOW! I want to start beating this thing NOW! I want to feel like I'm making progress. I need to take this time to reflect, to collect information, and to enjoy the relative health I feel. Yoga tomorrow will help. Robbie will help tonight.