I Don't Remember Signing Up for This

A Friend Diagnosed and a Random Thought

2012-02-13T15:11:00.002-05:00

A lady came into my office at the end of the day last Friday. Now this lady normally is one of the most upbeat, happy people I know, but just then she seemed on the verge of tears. It turns out earlier in the week she had been diagnosed with cancer. May you never know the gut-wrenching fear that comes with that diagnosis. I had to leave to pick up Robbie from school, but I did have time to ask "What have you got?" She said she had been diagnosed with Smoldering Multiple Myeloma. It was Stage 2. "Stage 2?", I said. "Come back when you have a problem! I've been Stage 4 for three years." I told her a diagnosis is not a death sentence. That you can live and work and exercise and do most of the things you want to do. We talked a little more and she went away a little less scared. She dropped by today and we talked more. She said I had made her weekend a lot better. I gave her some of my perspectives and offered to check with Dr. Cheson to see if he knew of any colleagues who dealt with her condition (I sent that email a few minutes ago). We talked about living with cancer and what different treatment options mean. Sometimes just having someone to talk to, someone who has been down the road you're about to travel, can really help. I like to think I helped Cathy today. It reminds me why I started the blog and why I need to keep it up more regularly.

Since I'll be posting this link to Facebook, let me first thank all of you who routinely post the "repost this if you care" kind of cancer awareness posts. Now I'll gently share this with you: I always smile when I see the ones that say something to the effect of "You may want a new sportscar, or a new vacation home, or tickets on the 50-yard line. I know people who only want one thing--to be cured of cancer. Repost if you agree". I want to--lovingly--let you in on a secret. Most of us with cancer want the new sportscar and new vacation home, too. For most of us cancer survivors (and that's anyone who has cancer and is surviving), we want what everyone else wants. You truly learn to live with--not in spite of--your affliction. So thank you, truly, for the thought. But if someone suggests giving me 50-yard line tickets, don't tell them "That's not what he wants!" I'm that kind of greedy: I want the cure AND the tickets.

The Evening Walk, as improved and documented by technology

2011-12-30T23:39:00.009-05:00

As captured on my fabulous new GPS-enabled smartphone, here in blue is the path of one of my two "normal" evening walks, a walk I haven't made in too many months. The walk starts and ends at our house just under the grey bullseye. Thanks to the free backpacking app I downloaded, I now officially know this walk I've been making since we moved here in 1996 is 2.6 miles long and it took me about 45 minutes. I knew all that before, but somehow this latest technological validation makes it much more formal.

During fifteen years perambulating this circuit (and in the preceding decades of walking and musing), I have occasionally pondered the idea of "finding happiness", looking far out into the distance like happiness is a destination to be reached; like it's a gleaming city whose glow can be seen just over the horizon--like Oz. And like Oz, there would be no doubt in your mind when you got there.

It struck me tonight that this image of happiness is undoubtedly wrong and dangerously misleading. The happiness I've always looked for is more likely already all around me, like jewels hidden in the long grass along my path, waiting to be discovered and plucked up. It's ever-so-cliche, but it occurred to me that happiness should be the journey, not the destination. You don't reach happiness--you find it. But to find happiness, you have to be looking for it. And you have to believe you deserve it.

Before every yoga practice, you are encouraged to set an intention for that practice--something you specifically want to focus on during your time on the mat. Because practice can sometimes be challenging, I often set the intention of finding joy in every pose I attempt. I find when I remember my intention I can smile even when my quads are screaming or when I'm falling again and again out of a balancing pose (any balancing pose). I want to bring that concept off the mat and incorporate it more fully into the rest of my life. Maybe that's my first resolution for 2012--find the joy.

Speaking of 2012, the little chime on my Casio G-Shock watch just told me that midnight is now in the rearview mirror, making these the first moments of the last day of 2011. Let the journey continue. Keep your eyes open. Find the joy.

via mobile (then fixed via laptop)

Happy Holidays/Georgetown in December

2011-12-20T21:49:00.000-05:00

Hi all. Kim B. told me I have to start doing this again, so I will (I'm putty in her hands). I'm constrained, because since I set up the blog, I've also added an @gmail.com account, and since Google has apparently appropriated Blogger, I had a hell of a time figuring out how to get to my blog. I'll fix the mechanics tomorrow.

I went to Georgetown for my second checkup since finishing my last round of chemo. The campus was almost deserted, with just a few students left taking finals. I don't miss finals. My first post-chemo checkup was back in October, two months after the end of the cycle. Second checkup was two months after that (today). Short version of today's checkup (and with a 6:00 a.m. yoga class tomorrow, there will be no long version): my CLL, while not in remission, is still basically dormant. I got three months before my next checkup. So that is good news.

Robbie is out of school for the holidays and turned eight just last Friday. Tomorrow is the second anniversary of Sunshine's departure. We're pretty much staying put for the holidays, but may make a day trip or two. I'll get into more detail and into more metaphysical musing later, but as I said I have a 6:00 am yoga class tomorrow, so that will wait. Just wanted to write this to prove to myself that I still can.

I'll finally be buying a true smartphone next week, so hopefully I'll be able to include more photos in the blog. Don't worry though--I plan to make very few of them of me. Maybe I'll try a video blog (a Vlog?)

Anyway, a very Merry holiday season to you and yours, whether that holiday be Christmas, Chanukah, Kwanzaa, or Festivus. Thank you for reading. If you're new to the blog, check out June 2009--that was when the real excitement happened.

Round 3, Cycle 6, Day 2

2011-07-27T09:23:00.010-04:00

Back at Georgetown for Day 2. I spent a nice evening last night with Jim, Elena and Tayrn, who fed me hamburgers, corn on the cob, potato salad, and beer. We also had champagne courtesy of Tayrn, celebrating a well-deserved, long-overdue pay raise. we stayed up longer than would should have, swapping stories and providing Tayrn the benefit of our age-derived sagacity. Jim didn't have to leave this morning until 6:30, so we got to sleep in a little. Still got my walk in, though. Got my coffee at Saxby's, but got a croissant rather than my usual muffin. I like to mix it up a little.

I do owe Elena an apology: in an earlier post, I implied that Elena sleeps until 10:30 every morning. Let me set the record straight. Elena assures me that she rarely sleeps past 9:30. I stand corrected.

My Bendamustine came early this morning, so it looks like I could be out of here by 10:30 (a full hour after Elena will have risen and shone) or so, which is nice.

My friend Dolly suggested in a comment after yesterday's post that having a port inserted would address my 'burnt vein' issues. For the uninitiated, a port is a device surgically inserted in the upper torso tied into the subclavian vein (Google it) providing easy access to the blood stream. Skin grows over it; the nurses stick the needle right through it. Of the three patients in this room right now, I'm the only one without a port. I don't have one for two reasons: my medical team has said I don't need one and I'd really like to avoid getting one until I really have to. Somehow--and I know it's just mental--I'm weirded out by the prospect of having the hardware installed inside me. I can just imagine waking up in the middle of the night stressing about it. One of the first things my friend Neal did upon finishing treatment for testicular cancer was to have his port removed--he didn't want it in him. I think I'd feel the same. So, again, it may be silly, but until a doc says I need one, I'll put up with burned veins.

Speaking of which, I think I'm feeling the little tell-tale signs that I'm going to lose this one, too. Just a minor tingling/burning sensation that portends another hard vein and accompanying bruising. Maybe I should have gotten a port.

End of the Trial, Take 3

2011-07-26T09:20:00.010-04:00

Well, here we are on the Tuesday of the sixth cycle of the third round of treatment. I'm sitting in treatment room 11 and will be blogging somewhat in real time today.

Today started well enough--I left early (4:45 a.m.) to get ahead of the traffiic and to get a little walking time in at G-Town. Made it to the garage by 6:20.

Jack the Bulldog, doing what Bulldogs do best.

As I wandered through the campus enroute to Georgetown proper, I was rewarded with a chance encounter with Jack, Georgetown's English Bulldog mascot. He was out with his handler and I must say he is a magnificent Bully. From a distance I wasn't even sure he was a Bulldog; he seemed too big. After asking permission, I petted him. He rewarded me with a snuffle and we went on our respective ways. I hoped it was a good omen.

Got here, got weighed, got internet access, and got stuck. Actually, for the first time ever, I got stuck repeatedly. Jameela--who is very good--made two unsuccessful attempts to get blood out of a vein on the top of my left forearm. Remember how I've told you in the past I never watch the needle go in? Now I remember why. I made the mistake of looking as Jameela was probing around on the second stick, trying to get a return. Although the pain was minimal, the world suddenly got a little wobbly and a cold sweat started pouring from my forehead. It didn't get any better as she switched to a vein on the back of my wrist. It was a very disconcerting feeling. Let's hope it's not a sign of things to come.

Remember last time I told you I was pleased because the vein we had used for infusing had held up? Not so fast. About two weeks ago, as I was showering (and you're welcome for that mental image [my soft soap scrubber is yellow, by the way] ), I noticed discomfort at and around the infusion site. Pretty soon a brown bruise nine inches long and half an inch wide appeared. The next day while we were horsing around, Robbie grabbed and pulled the arm, eliciting an "OW OW OW OW!" from Daddy that he at first thought was part of the game. It still is sore, and I have no reason to expect anything different from this round of treatment.

I've got an appointment with Dr. Cheson in 40 minutes, so I'll post this and add more later. Here we go.

10:55: Back upstairs again. Dr. Cheson is out of town, so I met with the lovely Catherine. We chatted about her incredible 14-month-old son and my incredible 7-year-old son. She then examined me--not much change, all still looks to be in order and on pace--and sent me on my way. I also met with Pari, my trials coordinator, and discovered Liz and I had planned a vacation over the top of my next set of labs. Pari's going to fix it for me. I need another bone marrow biopsy and CT scan to see where we sit, and it is mandatory that Catherine do my biopsy. She is an angel with the needle.

As I type this, I'm also partcipating in a high-level NAVAIR policy discussion on telework. I love electronics.

Still waiting for the drugs to show up, so in the meantime I'll post a recent picture of Robbie.

Robbie McMichael--Triton

I need to concentrate on the meeting, so I'll post now.

12:30: Teleconference is over and the Bendamustine is flowing. It wasn't lost on me that I was essentially telecommuting to a meeting about telecommuting. Kinda 'Inception'-like. Still an hour out or so from the Benadryl. Looks like a long day. I anticipate a nap this afternoon.

Just had a thought based on my earlier encounter with Georgetown's Jack: one of the many differences between Georgetown and LSU is that while meeting Jack on stroll through the campus is a treat, running into Mike the Tiger while crossing LSU's quadrangle would be a whole 'nother experience.

1:30 p.m.: BENADRYL TIME! Between the 4:15 a.m. wake-up and the benadryl now flowing into my vein, I don't expect to be conscience very much longer. I toyed with the idea of drinking a bottle of "Five Hour Energy", but recieved medical advice to the contrary. Side note: my head is congested and I was worried about not being able to breathe through my nose as I slept. I thought, "Wonder if I have any bendaryl in my computer bag?" Then I remembered why I was going to be sleeping soon. Duh.

5:30 p.m.: Wow. For all intents and purposes (or 'all intensive purposes', which is how I thought that phrase was said for many year), I just woke up. Don't know if it's the early morning start or a stonger strain of benadryl, but that's the longest it's ever put me down. I wasn't asleep the whole time--I snuck a couple of bathroom breaks in there--but I was out for all practical purposes.

Apparently there's another guy here starting the same trial I'm just now finishing up, and he'd like to talk. I'm going to let the nurses know that I'm open for business again. I'll let you know how that goes.

6:25 p.m.: Just spent twenty minutes or so talking to Jesse, an African-American gentlemen a few years older than me, who is on cycle 1 of the same trial I'm finishing today. He was curious about effects, etc. that I've noticed with this trial. I told him he'd have to read my blog. Not really--I gave him all the relevant info and will be sharing my blog address before I go.

6:30 p.m.: AND, we're done. Didn't get the last 30 mililiters or so of the drug due to technical issues, but I did get at least 1000 ml. We're closing up shop for the night. Sonia cleared the IV lead with the anti-coagulant Heprin, wrapped the site with 16 feet of gauze (roughly), and said good-night. That's my cue to put away all the electronics and head to Jim and Elena's.

You have a great night.

Sven and Ole Go to the Beach

2011-07-05T20:24:00.001-04:00

As promised, "Sven and Ole [pronounced: Oh-lee] Go to the Beach". (for max comedic effect, please read with a bad Norwegian accent)

Sven and Ole went to da beach one day. Sven, he spread his beach towel out and started puttin' on de SPF 45. Ole had different ideas.

"Hey Sven, I'm gonna wear dis Speedo svimsuit up and down da beach and meet some gurls!"

After about tventy or so minutes, Ole came back lookin' kinda sad.

"Sven, de gurls von't even look at me. How'm I supposed ta talk to dem?"

Sven said, "Ole, if you vant to impress dem gurls, you should put a potato in your Speedo."

Ole thought that was a great idea and put it into action. He grabbed a big potato from their lunch basket, put it in his Speedo, and headed down da beach.

After a few minutes, he came back.

"Sven, now all dem gurls is all laughing at me!"

"Ole. You're supposed to put da potato in the front of your suit."
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OK, there was the promised joke. Hope you like it as much as I do (I love that joke). So far all is still well with me. I seem to have tolerated the chemo better this time, although on Sunday I was hit with a big hunk of low energy. All seemed better yesterday and my going-on-two-month head/chest cold seems to be clearing up.

As I mentioned last post, between the cold and the bad wrist, I had gotten out of a lot of good habits and substituted several bad ones. I've resolved to get back to the good habits and as down payment got up this morning at 5:15, did 30 minutes of yoga in the living room, followed by 10 minutes of meditation. That's one in a row. Let's see if I can keep this streak alive. I'll keep you informed.

Hey Everybody! Remember Me?

2011-06-29T23:23:00.003-04:00

I love to walk. And I'll say more about that after my abject apology served with a little whine.

First let me assure you that everything is humming along smoothly.

My apologies to my dedicated followers for not being a more dedicated blogger. No good excuse, so I'll use a bad one instead. The chemo I'm getting--the Ofatumamab and the Bendamustine--is a bit more of an ass kicker than the stuff I got first time around. Combine that with the growth factor shot and by the time the weekend rolls around I have energy for about one task a day. Liz has worked hard to keep her travel in check, but it's just happened that the last three times I was coming out of treatment, she had to go to Seattle. She had to leave on the Wednesday afternoon I was finishing infusion and before my two-hour Thursday drive to get my growth factor shot. By the time I got Robbie from school, got him to swim practice, got him fed, got him bathed and got him to bed, I didn't have the poop to write anything. By Thursday night, the chemo really kicks in and I'm fairly in a fog for the next four of five days (lot of f's back there). That's was usually when I would blog. Now that sounds like a great excuse, but my energy level is back up after a week or so, so why didn't I blog then? Lazy. Out of the habit. Out of guilt for having not blogged. It's a bad cycle.

I have a pattern that repeats anytime I fall behind in communication with a friend: I feel guilty about it, which somehow makes it even harder to go back, which adds more time, which adds more guilt, etc. etc. I finally got enough gentle anonymous pokes (Eggy-Pay and Im-Kay) and reminders from other friends that this isn't just my blog. So I'm getting off my ass and writing again.

And I'm finding, as I usually do when I get back to the blog after being away, that the hardest part is starting. After that it kinda flows. And isn't that the true of so many good things?

Anyway, today was the second day of Round 5 of my chemo. One more round to go. As I said earlier, there are differences from the first round of chemo. I feel more tired for the week or so afterward. This stuff is also harder on my veins. In five sessions, I've burnt out two veins, one of which kind of blew out when the nurse was injecting an anti-coagulant after my previous Tuesday session. When she pushed in the plunger a little too vigorously, it felt as if someone had put out cigarette on my arm at the point where the line entered the vein. (OK, that's a little hyperbole, but it did hurt enough to make me jump.) The next day I had a bruise around the site. Yesterday and today, at my urging, she was much more gentle, and it appears we saved the vein.

I posted two pictures earlier today. My Facebook friends may have understood the one with the barriers and chains.

Georgetown Moron Trap. Red paint, barrier, and second chain recently added.

Yep, that lower yellow chain (which was the only thing in that gap two months ago) was the one I tripped over two months ago and absolutely busted my butt. More to the point, I took all the skin off the outer three knuckles on my right hand (while saving the iPad held in said hand) and sprained my left wrist slapping out the fall. The wrist still hurts. I like to think the new barrier system is there in my honor. And no, I didn't think about suing the hospital. One, I don't sue people for my own inattention and stupidity, and Two, I kinda want them to continue to treat my CLL. Seems counterproductive to piss them off in court.

But back to my opening sentance: I love to walk. Even back in my early Navy days in Pensacola, just after the invention of manned flight, I loved to go for long walks on the base. I later lived for ten years in and around Haddonfield, New Jersey, a town that easily could have been Norman Rockwell's inspiration. Until recently Haddonfield was at the top of my "Favorite Places to Walk" list. Now Georgetown has taken that crown.

One of the true pleasures I've discovered as part of this adventure is how beautiful Georgetown can be. As you know, I stay Tuesday nights with my friends Jim and Elena. Jim leaves at 5:45 for work and I generally leave with him. It's either that or wait until 10:30 for Elena to wake up (love you, Elena). Anyway, at that time of day, it takes me all of 20 minutes to get to Georgetown. I'm usually in the parking garage by 6:15. The Trials area on the 7th floor doesn't open until 8:00, so this gives me almost two hours to indulge my wanderlust.

Francis Scott Key Bridge (I didn't take this)

This morning was absolutely perfect for walking. A front had moved through during the night, leaving the morning cool, breezy, and refreshingly lacking in humidity. My usual drive crosses the Francis Scott Key bridge (see above) between Rosslyn, Virginia and Washington, D.C. In good weather, the pedestrial lanes flanking the traffic lanes are always full of runners, bikers, and walkers. On a whim, I decided to join them today. So across the campus, down the Exorcist steps (see one of my early entries) and across the bridge. It was as great as I had hoped it would be. Looking out over the Anacostia river I could see several boats from the nearby boathouses conducting early morning workouts. Everything from single-person sculls to two-person to four-person and on up to eight-person boats. It was around 7:00 when I made the return leg, by which time the runners started coming across.

The other picture is from the path cart along the canal that parallels the river.

Georgetown Canal Path (I did take this)

People shop on the main drag of Georgetown just one block away and never know this path and canal exist. It was incredible. I walked for just about two hours.

No matter where my peregrinations might take me on a given Wednesday morning, I invariably end up at Saxby's Coffee at 3500 O Street, about three blocks from campus. I always have a muffin and a large coffee, and sit by the large bay window to soak in the scene outside.

Saxby's

It has such a quaint and "been there forever" feel, I was really suprised to find out that Saxby's is part of a nationwide chain. I highly recommend it to anyone visiting the area.

You may have noted that with the exception of a paragraph or two up front, I haven't spent much time talking about the CLL and the treatment. I guess it's part of the whole "living with cancer" thing. Before I was diagnosed, that phrase always conjured up an image of a person locked in a cage with a beast, learning to live despite their companion. But that's not it--that would be "living despite cancer". Living with cancer--particularly when you are 'blessed' to have one of the milder variants like I have--means it's just one more thing in your life. When I first started this blog, it was the big scary Gorilla in the Room. I didn't know what to expect and I was quite frankly terrified. Now it's the devil I know. Maybe it's perspective. Maybe it's desensitation. In any case, I fret more about the time the treatments take than I do the condition they are treating. I recognize that makes me lucky.

Met a great guy named Paul in the the common treatment room today. He has a variant of adnoid cancer (adnoid cancer? sounds kind of boutique to me) that manifested itself in his left lung seven years ago. That was when they removed his lung. When they start removing lungs, now you've got some day-to-day impact. He said he's had to slow down. He can't run or ski anymore. But he's still here. He has a couple of flare up spots they are treating in his trial, and he gets to wear a 'chemo fanny pack' for two days to get his infusion. Last time his hair fell out. As I've said, everytime I go to the 7th floor, I find out how lucky I've been.

Two last things, one happy one sad: my buddy Brad's wife Patrice has come through treatments that boggle the mind over the last several months, and now the doctors are cautiously optimistic that they've gotten all the cancer out of her mouth and throat. On the sad side, as I was finishing my treatment today on the 7th floor of the Main Building, a co-worker's family was making one of life's hardest decisions nearby. On the 4th floor of the Intensive Care building (where I spent time two years ago), they gave the order to cease the heroic measures keeping her father-in-law alive. At least I was able to show them where they could get a decent meal near the hospital. My prayers are with my friend, her husband, and their family. [note: as I was finishing this entry, I learned in a text that my friend's father-in-law passed away this evening. May he be at peace.]

I will try and get back to the same posting rate I did before. I'm also resolving to get back on my yoga mat, which has gathered quite a bit of dust since I sprained my wrist (and got strep throat, but I've already exceeded my whining limit). So, to the good friends who lovingly prodded me to get back to the keyboard, thank you and please keep prodding.

As this post was somewhat dark, next time I'll start with the joke about Ole and Sven at the beach.

Yesterday's Adventure in Medicine

2011-03-27T18:24:00.004-04:00

Boy, was yesterday exciting! While it would be more fun to save the punchline to the end, it wouldn't be nice, so I'll tell you up front that I'm fine except for a cold. And I'll tell you how I know that so definitively.

I've been fighting a cold for the last week. Over the last few days, it had turned nasty. Yesterday, it turned scary, when my temperature began to creep up toward 100. That's a scary number for me, so I loaded Robbie up into the van and headed for the near-by Urgent Care, where you can see a doctor on the weekend. Enroute, I called Georgetown and asked to speak to the hematological oncologist on call. Dr. Fitzgerald called me back. She reassured me that the blood work I had done on Wednesday showed that my white blood cell counts were fine. She told me "Go get your cold treated." That made me happy.

I signed in at the Urgent Care, giving them my particulars including the chemo drugs I'm currently on. I suddenly found myself whisked into the back ahead of several people and learned that the nurse on duty was an oncological nurse in her "day job". I told her what Dr. Fitzgerald had said, but she just shook her head and said, "We really should be sure." When the doctor came in, after obvious consultation with the good nurse, she said "We can't treat you here. You need to go to an emergency room and get blood work done." Crap! I texted Liz, who was enroute from the airport after a week in Seattle, and told her to meet us at the Calvert Memorial Hospital emergency room.

In the meantime, it's creeping into my head that I might actually be neutropenic--that I might have had a white blood cell crash and that I was in for June 2009 all over again. Crap, Crap, CRAP!

Tim's vision: I walk into the emergency room. They take a two-tube blood sample. After 30 minutes they come back and say that either I'm not neutropenic and give me some antibiotics, or that I am neutropenic, in which case I start driving for Georgetown. In any case, I'm figuring an hour max at this hospital.

Reality: I walk into the emergency room (here's where we diverge from Tim's vision). Liz shows up (thank God), they haul me into the back into treatment/isolation room 11. They give me a cup to pee in (?). They give me a gown to put on. A tech comes and takes me for two chest x-rays. When I get back, they lay me down on the bed and began sticking electrodes on my chest. The nurse confirms that, yes, my chest hair is too thick under the one for it to get a good reading, so we have to rip it off, trim the hair and reattach. I confirm that waxing will never be an option for me. They draw blood from my left arm, but leave in a catheter (?). They later come and draw more blood from my right arm. They make me hawk a loogie into a sample cup--no points for style or distance.

I'm becoming more paranoid and more convinced I'm neutropenic. Liz and Robbie are in and out visiting. They even embroidered a germ mask with my name.

Another nurse comes to get arterial blood for a blood gas test. They draw it from my right wrist. In case you've never had one of those, they kind of hurt. I'm really getting paranoid. Oh, they've now hooked me up to a saline IV. I starting to feel like Gulliver shortly after he met the Lilliputians. Oh great! Now they want a throat swab.

Liz and I are game-planning what we have to do if the news comes back bad.

Finally, about three hours after I arrived at the hospital, a nurse comes in without a mask and says, "You're not neutropenic." Whew! Final diagnosis (I'm not kidding): You have a cough. A cough. And an upper respiratory infection (the dreaded URI). It takes about another hour to unhook everything, get my prescription written, and get out the door.

Let me say the staff at Calvert was uniformly professional and polite. They did a great job, and as the doctor explained, when they hear they have a chemo patient with a fever coming in, it's like hearing they have an overweight smoker with chest pains. There are certain precautions they take.

So good news is I know definitively that my blood counts are still good, that my pain threshold is still relatively high, and that I finally got my antibiotics and cough medicine. The hydrocodone based cough medicine put me enough in la-la land that I overslept and missed choir practice this morning. The fever has abated and all is (relatively) right with the world.

The End.

Memory Lane

2011-03-11T12:32:00.002-05:00

Was just looking back almost two years to my first chemo posting:

Session One, Day One

Unsurprisingly similar.

Chemotherapy, Take 3

2011-03-08T08:26:00.016-05:00

8:05 a.m.: Back at Georgetown, in the Clinical Trials area on the Seventh floor of the Main building in Room 108 (this side of the building has the view of Georgetown I noticed in my very first GTown post), waiting to begin the first cycle of my third round of chemo. I'm going to be building the blog in real time today, so feel free to check in periodically for updates. The real fun should begin about 15 minutes after I get my first dose of intravenous Benedryl--hope I don't do the blogging equivalent of drunken texting.

Left the house at 5:20 this morning and got here at 7:25, which is not bad time for this run. The Trials areas was already open and manned; Miss Marta got my vitals and sent me to my home for the day.

I was here last Wednesday for a trial dose of the trial drug, Ofatumamba. Took for frickin' ever to get the 1000 ml (that's almost a liter) infused, but the good news is that other than causing a controllable rash (an ITCHY controllable rash) there were no adverse side effects.

Now I'm waiting for the pomp and circumstance to start. The needling of the arm, the admis--BREAK BREAK: we're about to insert the catheter (not there) in a vein in my forearm. Weird, but even after the last two years of this stuff, I still can't watch the needle go into my arm. I've been swabbed up and...Jamela just nailed the vein with absolutely minimal discomfort, drew about eight vials of blood. There's a lead attached to the catheter that ties into the IV line, and that will stay in place until tomorrow. I'll break here and share this on Facebook. Hope this is entertaining and informative today.
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8:55: A big part of chemotherapy is waiting. Now that they've taken blood, we have to wait for the labs to come back to say I can start infusion. No big deal now, but later when my white blood counts may be suppressed, I can actually have counts too low to allow treatment. Only when the labs come back OK will they order the drugs made up. Unlike Tylenol or Theraflu, chemo drugs are not prepared in advance. They are expensive and the pharmacy (located here on the seventh floor) will only start mixing when the patient is here and ready to start treatment. This could easily translate into a couple of hours of sitting around. Last Wednesday the labs were really slow, which led to my 8:15 p.m. exit. (I've already appropriated an extra sandwich from the patients' fridge (no I didn't steal it--the hospital provides them) as an emergency back up dinner should I get delayed again.)

Back to the theme of "waiting", the real waiting today will start when they hang the big bag-o'-drugs up on the IV stand, tie it into my arm, then leave it there until it's all gone. Effectively, I'm tethered to the IV stand from that point forward. It gets old, particularly trying to prevent the IV line from tangling if/when you move around.

Anyway, I've got connectivity through my work computer and my iPad. I'm currently looking at workforce trends and listening to 14th century a cappela choral music courtesy of the iPad's Pandora application (well, somebody's got to listen to it). It's very calming.
----
9:50: Still waiting. As an aside, one advantage of getting here early? You get to go around to all the other treatment rooms and steal the good magazines.
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9:55: Mercedes just showed up and we're about to get the party started. Mercedes has promised smooth sailing today and forbidden me from getting a rash. My blood counts came back and everything looks pretty good. I'll be getting the Benedryl first, so this could be my last coherent posting for a while.
----

10:25: Finally infusing, but only with the 'prep' drugs--no Bendaryl just yet, though. I'm getting Zolfram to ward off nausea, then will get my Bendamustine afterward. Apparently we wait an hour after the Benda before we can start the Ofatumumab. I've already accidentally hooked the IV line around the arm of the chair, but you get really sensitive to the tug. No hurt, no foul.
----
11:10: Lunch came early today. Today we are having a brown bag lunch with a tuna salad sandwich, an apple, some Lorna Doone shortbread cookies, a 4 oz. container of cranberry juice cocktail, and a bag of Lays potato chips (yes, all that and a bag of chips). Also got a spare banana for later and a USA Today. Not a bad haul.
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11:35: Done with the Bendamustine and starting on the next round of 'prep' drugs. Still no Benadryl. Just met Bethany, a nurse who took my vitals. She normally works down on the 5th floor on the 'non-trials' floor, but is rotating up here every now and again. Nice to see a new face. Lunch is done, and if it is followed by the Benadryl, I see a nap in my very near future.
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11:53: Fabulous. Was just informed that I have to come back on Thursday for a growth factor shot (which will stimulate the production of white blood cells). Good on some level, but I thought we were going to wait to see if it is necessary. What this translates into is "Drive two hours, ride an elevator, get a shot, drive home two hours". As I said, Fabulous.
----

12:30: Not sure if they gave me something, but staying awake does not seem to be an option just now. I keep falling asleep and feel sightly drunk/drugged/sleepy.
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12:45: Surprise! I did get Benadryl infused earlier. No wonder I got turned off like a light. Mercedes just started the 1000 ml bag with the Ofatumumab in it. God that's a big bag. Now lets see if I get the rash again.
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3:05: I've been drifting in and out of sleep for the last two hours as the Benadryl works its magic, but currently am fairly awake. We are up to the maximum infusion rate (400 ml/hour)and I have about 750 ml left to infuse. So I should be done by around 5:00 p.m., a much better time than I anticipated going into the day. So far, no rash and no itching. I'm still managing to get some work done, though I've been getting assists with logic from one of my staff. We're working on a moderately tricky workforce policy and my mind isn't quite keeping up. Thank heavens K4 is keeping me straight.
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4:45: If my infusion bag was a peanut butter jar, it'd be about time to start scraping the sides and bottoms--almost done. Looks like I have about ~50 ml left, or about 7 minutes worth to infuse. Not a bad day so far. I actually got a fair amount done. As we speak the alarm on the pump is beeping, bringing in Mercedes to check on me. She agrees with the 7 minute estimate. We're going to leave the catheter in and use it tomorrow. I used to do this routinely for two days, so one day is no big deal.
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4:55: AND we're done. At least for today. Mercedes unhooked the IV then injected an anti-coagulent to keep it from blocking up. We've wrapped the catheter in gauze. Now all I have to do is clean up my scattered accoutrement and head for Jim and Elena's (though I may walk the campus a little first).

Hope you gained some insight into a fairly standard day of chemotherapy. I'm lucky in that I have almost no bad side effects to deal with, but it's still a long day. Tomorrow should be fairly short by comparison.
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10:45: Postscript. In bed at the home of my friends Jim and Elena. Had a wonderful dinner, much beer and wine, and a great conversation with their daughter Tayrn. Greatly enjoying and appreciating their hospitality. Signing off for the day--thanks for coming along. (Now if I just had some intravenous Benadryl.)

May I have another bone marrow biopsy, please?

2011-02-22T12:55:00.017-05:00

12:56 pm: At Georgetown, waiting for my next bone marrow biopsy. Looking across the small room, I can see the table holding the shiny implements. I'm blogging in real time from the treatment room, waiting for the lovely Catherine to come ply her trade. I hope they aren't using the generic equivalent Lidocaine today.

Best Marrow Draw Ever! Seriously, Catherine just did the best, most discomfort-free draw I've had yet.

Still in the exam room, lying on an ice pack to stop swelling/bleeding. The labs guy just came in and apologized for all the blood he's going to draw. This should be good. 15 tubes is my personal record. Also, they've never come to me before. Yoinks!

Personal record: the phlebotomist drew 18 vials of blood. That breaks my old record by three. They brought me two small containers of orange juice to replace the fluids, though I think a pint of really good lager would be a better choice (particularly given the lowered blood level).

I've moved on to Cardiology, where I'll be getting an EKG. No worries, as after my hospital stay I had at least three echocardiograms done that all showed my heart in great shape.

And I'm done (until March 1st). The EKG was pretty amazing, time wise. The tech laid me out on the exam table, attached adhesive leads to my ankles and arms, then put 11 more in various places on my chest. We chatted while she wired me up. She then told me she needed me to be still for thirty seconds. I assumed we were calibrating the machine. After thirty seconds, she started pulling off leads--we were done.

I'm now eating a late lunch consisting of a tasteless roast beef wrap bought at the Hospital deli and a coke. Leaving to beat rush hour traffic, but I'll be back tonight to talk about the CT scan that started the day and the really neat lady I met while waiting.

CT Scan update: I started the day getting a CT scan (the big doughnut-shaped machine you get pulled through to image your innards). Showed up at 8:10 for my 8:30 appointment, having braved the early morning snow to get there on time. They--of course--had misplaced the order for my scan, so I sat for a while until they found it. Once it was in hand, they led me back to a familiar waiting room.

While there, I ended up in a conversation with Jackie, a really nice older African-American woman being treated for colon cancer (first diagnosed in 2001). Turns out her late husband retired from the Air Force. We played "Where were You Stationed?", during which she said something that really hit home. At one point she told me that they had been stationed in Myrtle Beach, South Carolina. What she said next rocked me back on my heels: "Of course back then [early/mid-1960's], we couldn't enjoy the beach."

Turns out that "back then", Myrtle Beach was segregated. Blacks weren't allowed on Myrtle Beach. It was "whites only". If you were black, you had to go to Atlantic Beach, known at the time as "The Black Pearl". I learned all this just now on the Internet.

Look: I grew up in segregated South Louisiana. I remember a laundromat that had separate facilities with appropriate arrows for "coloreds" and "whites". I remember drug stores--owned by church-going, God-fearing folks--that ripped out their soda fountains rather than serving black customers. I remember desegregation. I just don't think back on it too often and I only knew one side. This fact, stated so gently and matter-of-factly by this woman, really hit home. And I know we have a long, long way to go. But it's worth remembering sometimes just how very far we've come. Race ain't such a big thing for most people anymore. Sexuality ain't such a big thing for most people anymore. We're making progress. So thank you, Miss Jackie, for reminding me just how far we've come and how far we still have to go.

By the by, I did NOT have to drink good ol' Barry Smoothie today before the CT scan. Instead, Grace--the cool Jamaican tech--gave me two large glasses of water with what I can only assume was concentrated goat bile dissolved in them. It didn't taste good (think 'bitter burnt vanilla' with an aftertaste that just goes and goes), but it went down quickly.

Anyway, I go back next Tuesday for my first dose of Ofatumumab (All Hail Prince Ofatumumab!) to see how I tolerate it, then the real dosing begins the following Tuesday. Back in the saddle again.

Groundhog's Day (or Here We Go Again)

2011-02-02T21:47:00.002-05:00

Just got free from a hour of catching up on folding clothes, and since several of you were kind enough to inquire, I'll do a quick update. I'll flesh it out tomorrow (and pursue the Groundhog's Day theme a little further), but for now the Reader's Digest version (yet another dated reference).

After a brief absence that was never a remission, my CLL is back. The nice thing about working with someone the stature of Dr. Cheson is this: if I were going to Southern Maryland Oncology and Bait Shop here in St. Mary's county, they'd shake their heads, pull the next protocol out of the book, and mumble something about perhaps finding a clinical trial. With Dr. Cheson, he excuses himself for a moment, calls the trials nurse, and books me into the latest, most promising trial, for which he is personally the chief investigator.

So where we are is here: in about three weeks, I'll head back up to Georgetown for another bone marrow biopsy (yea!), another CT scan, and some neurological testing to establish a baseline, then one week later I'll start a protocol similar to my first.

I will be given two drugs. The first is one I would have been given anyway called Bendamustine. Absent the trial, they would have also given me my old friend Ritxamab. Instead, as the focus of the trial, I'll be getting a drug whose name sounds like the king of some Central African country--Ofatumumab. Apparently they have been having good results with CLL that has resisted other treatments. Again, it pays to find the right doctor.

As an aside, and as a motivator, I've signed up to run a half-marathon in May. Still love my yoga, but needed something extra to lose the Thanksgiving-Christmas-Disney weight. I also thought it would provide a good focus. I've been in the gym three times this week, and covered 4.1 miles tonight, running for 20 minutes straight at one point. I alternated running and walking for the rest. Total time was 50 minutes. It's actually feeling pretty good.

So the half-marathon prep will be the other storyline for the next four months. What I won't do to keep you people entertained.

New blogging tools

2011-01-17T00:44:00.003-05:00

Text from note:

Playing with my Christmas iPad and found some functionality that's pretty cool. This may become the venue whereby I capture my thoughts for the blog. I'm getting new functional (and free) apps for my iPad, so we'll see if I'm smart enough to get this to my blog.

As an aside, I also found a new statistics tab in my blog controls, and have discovered some things that kinda blow me away. If this thing can be trusted, in the last month I registered around 800 hits on my blog, many of which came from the United Kingdom and the Netherlands. Others were from India, Australia, Russia (uh oh), Germany, Brazil, and Spain. Who knew? (Wish I knew how to say 'Thank you' in those other languages)

Next appointment is on February 2nd. More news then. Now let's see if this will actually post.

Open for Business Again

2011-01-01T23:02:00.005-05:00

Hi all. Sorry I've been away, but I was enjoying not having any medical news to share. I couldn't really pretend that the CLL was gone, but at least I didn't have to focus on it. Without medical news, I felt a little pretentious blogging. Obviously, since I'm posting again, the situation has changed, and so the blog is back open.

During my December 22nd checkup with Dr. Cheson, he confirmed what I thought I had been sensing: my lymph nodes are swelling again. Now remember, I was never officially in remission, so this isn't unexpected. My blood numbers still look good, though the white counts are up over where they were back in June. They're still in the acceptable range, but they are up. So...we're going to go for another ride on the Chemo Carousel. I don't know yet the nature of the next round of treatment, but I'm pretty sure it won't be either of the drug sets I've been on before.

On February 2nd, I go back for my next appointment, and if history is an indicator, I'll probably start treatments again almost immediately.

I have a goal of running in a half-marathon this May with some friends, so I'm hoping that whatever we use this time will not be too debilitating.

Other 2011 goals are to keep my yoga practice active, to keep my sense of humor, and to keep my hair. It would be nice to keep my hair, if only to spare me the crap that I'll get from the ladies in my office should I have to go all "Kojack" on them (for my younger readers, sorry for the old reference--use the Google machine and you'll understand).

SO, it looks like I'm back in the blog business. Hopefully, we'll have a repeat of 2010, with little medical excitement (except for that whole 'getting a big hunk cut out of my left ear to get rid of the basal carcinoma' thing: the graft was superb with absolutely minimal aesthetic impact. Still hurts a little where the cartilage is missing.). In any case, here we go again.

On a more upbeat note, I was extremely proud of Robbie today. Liz took him (at his request) to the nearby town of Waldorf to go ice skating. He had seen the skating rink on the National Mall in DC yesterday and wanted to try. Well, they found the place, rented the skates, got on the ice and he HATED it. He made it around the rink once holding onto the rail with both hands and pulling himself along. He made two more laps holding on to Liz's hand. After three laps, he left the ice in tears and in a rage. He swore he was never going to do this again! Liz, hoping to preserve the situation for another day, came over and said, "It's OK; let's take off your skates." (This is where I get proud.) He stopped her, saying "No. No Mommy, I want to go around three more times." And he did. And now he likes ice skating. It's the first time I've really seen him show this kind of resolve. I'm a little less worried about him making his way in the world.

Keeping in Practice

2010-08-15T09:58:00.002-04:00

Nothing new medically to report, other than I did get a leg cramp in my sleep the other day--first one of those in a long time--and I'm still digging around for the gumption to keep exercising.

Robbie story: Friday night we all were at the home of our friends Bill and Ellen, celebrating the impending departure for college of their amazing daughter (and Robbie's favorite babysitter) Elizabeth. Wonderful get together with a lot of neat people. We were in Liz's rental car, due back to Avis the next morning. As the evening grew late, Robbie came to me and asked for the keys to the car. My assumption: he was on a mission from Mommy. I gave him the keys and thought nothing. Ten minutes later, Robbie came up to me frantic and in tears. I finally got him calmed down enough to get a story out and found that somehow, against all odds, he had gotten into the rental car, started the engine, then gotten out of the rental car, and locked the door. The locked car was now idling in Bill and Ellen's driveway. Robbie was disconsolate. Liz and several other engineers commandeered a coat hanger to attempt the rescue, while (at our friend Robin's suggestion) I called Avis. Apparently we were not the first folks ever to lock keys in a car; Avis launched the duty locksmith, who arrived thirty minutes later with all the right tools for the job. The whole time we were waiting, Robbie kept running from me to Liz to the house, crying to break your heart, all the while telling anyone who would listen that it was his fault. It was so precious. Anyway, locksmith arrived, Robbie shook his hand, and the car was open in about two minutes.

My thanks to Bill and Ellen, who were phenomenally gracious, even offering us the use of a car until the situation was resolved. Elizabeth is now firmly ensconced in her new home for the next four years and her younger sister Katie has volunteered to take over babysitting duties. It was a win all the way around.

That's all for now.

Still Here

2010-08-07T22:39:00.010-04:00

Sorry it's been a while since I've posted, but not much has been going on. Medical update--the thingee in my left ear was in fact a basal carcinoma (lowest rung of the skin cancer ladder) and I am scheduled in September to go to get it re-looked at (read: cut on and burned some more), but it could be a lot worse. It doesn't appear to have spread and once they do the procedure, it's gone. Would that CLL was so easy. I'll continue my yearly pilgrimage to the dermatologist and recommend you do the same.

One of the reasons I haven't posted is that I've been kicking around a topic that, quite frankly, I don't like. For a couple of reasons. I don't like it, but I have to write it before I can move on to anything else. Now that I've started this post, I'll finish, but let me say up front this is not a cry in the darkness or an attempt to change any behavior on anyone's part. It's just a slightly melancholy recognition of a situation in which I find myself.

Way back when I was a teenager--just after the moon was invented--we used to float the Tangipahoa River on inner tubes, well before anyone made it a commercial activity. It wasn't known as 'tubing'. It was known as 'floating the river'. You'd always start with a core of people, but on nice days you'd often meet up with other groups. Many times they were great people and you would float for an hour or so in their company. Floating with a group is easy--it takes only minimal effort to stay close. You just have to reach out, grab an inner tube, and you're back in contact with their beer cooler. But say you get distracted and you float a little ways from the group. It can take some real effort to catch back up. Lots of flailing and splashing. Every now and then you'd find yourself so far from a group that you knew no amount of effort was going to bring you back to them. You didn't like those people any less--you just knew the river had taken you different ways and the distance between had grown too great to bridge.

So it is with social groups. It's dawned on me lately that while I still have wonderful friends, I no longer belong to any particular social group. The phone just doesn't ring anymore. No one appears to be saying, "Well, it ain't a party if Tim isn't here!" As an admittedly social creature, this is extremely disconcerting to me. The group with whom I used to hang has gone in a different direction. They zigged while I was zagging. We weren't wrenched apart; we lost contact in the fog of everyday life. Until recently I've allowed complacency, inattention, and (finally) trepidation to mask this disconnection. I've been in Southern Maryland for almost 14 years now and there are people here about whom I care very deeply. We just don't move in the same circles any more. The hardest part is knowing that I am to a large degree responsible. I am lousy at keeping up friendships (just ask my friends in Louisiana, or the Navy, or New Jersey). It's actually a pattern with me, though I usually wait until I move away from people before I lose touch. It's weird losing touch with people to whom I'm still geographically close.

I was hoping that through writing this I'd reach some epiphany, find some final satori to wrap this all neatly, but I got nothin'. When it comes to friends, I have been and am one of the luckiest guys on earth. I look through my ledger and read the names of some incredible people. To my comrades in good times and bad reading this, to those with whom I've sweated and bled and laughed and danced, to those on whose shoulders I've cried and whose tears have dampened my shoulder, I hope you know how special you are and how very much you mean to me. My hope is that some confluence of currents, eddies, and tides will bring us back together again (mainly because you ended up with the cooler).

OK, that's out of my system. On to better things.

Adventures in Dermatology plus the Death of a Cell Phone

2010-07-17T14:08:00.007-04:00

Hello all!

It's been a couple of weeks since I've had anything to post, then this week: BOOM! goes the dynamite.

Following the advice of just about every medical professional whose seen my left ear over the last several months, I went to my dermatologist this past Thursday. I've had a 1/4" circular 'thing' (I call it a thing to spare you the less savory details that a fuller description would entail) on the pinna (Google it) of my left ear for about four months now. At first I thought/hoped it was a bug bite, healing slowly due to poor circulation in the area. In my heart I knew better--I've been expecting this for the past 15 years. I was pretty sure it was some form of skin cancer (I have to learn to just say 'no').

The following are the risk factors for skin cancer (provided here for your edification):

Fair skin. Having less pigment (melanin) in your skin provides less protection from damaging UV radiation. If you have blond or red hair and light-colored eyes, and you freckle or sunburn easily, you're much more likely to develop skin cancer than is a person with darker features.
A history of sunburns. Every time you get sunburned, you damage your skin cells and increase your risk of developing skin cancer. After a sunburn, your body works to repair the damage. Having multiple blistering sunburns as a child or teenager increases your risk of developing skin cancer as an adult. Sunburns in adulthood also are a risk factor.
Excessive sun exposure. Anyone who spends considerable time in the sun may develop skin cancer, especially if the skin isn't protected by sunscreen or clothing. Tanning, including exposure to tanning lamps and beds, also puts you at risk. A tan is your skin's injury response to excessive UV radiation.
Sunny or high-altitude climates. People who live in sunny, warm climates are exposed to more sunlight than are people who live in colder climates. Living at higher elevations, where the sunlight is strongest, also exposes you to more radiation.
Moles. People who have many moles or abnormal moles called dysplastic nevi are at increased risk of skin cancer. These abnormal moles — which look irregular and are generally larger than normal moles — are more likely than others to become cancerous. If you have a history of abnormal moles, watch them regularly for changes.
Precancerous skin lesions. Having skin lesions known as actinic keratoses can increase your risk of developing skin cancer. These precancerous skin growths typically appear as rough, scaly patches that range in color from brown to dark pink. They're most common on the face, lower arms and hands of fair-skinned people whose skin has been sun damaged.
A family history of skin cancer. If one of your parents or a sibling has had skin cancer, you may have an increased risk of the disease.
A personal history of skin cancer. If you developed skin cancer once, you're at risk of developing it again. Even basal cell and squamous cell carcinomas that have been successfully removed can recur.
A weakened immune system. People with weakened immune systems have a greater risk of developing skin cancer. This includes people living with HIV/AIDS or leukemia and those taking immunosuppressant drugs after an organ transplant.
Exposure to certain substances. Exposure to certain substances, such as arsenic, may increase your risk of skin cancer.
Increasing age. The risk of developing skin cancer increases with age, primarily because many skin cancers develop slowly. The damage that occurs during childhood or adolescence may not become apparent until middle age. Still, skin cancer isn't limited to older people and can occur at any age.

Of the eleven, I can check the block on at least eight, if not nine. So it was not really a surprise when the dermatologist said, upon looking at my ear, "That has to come off." Not the ear, silly, just the thing. Good news is it appears to be a 'basal carcinoma' rather than a 'melanoma'. Melanoma is heap bad. On the other hand, "Basal Carcinoma" sounds like a British game show host or something you'd order at Olive Garden.

Anyway, she numbed me up, apologizing for any discomfort. I laughed and said that after five marrow biopsies, it really wasn't so bad. She took a biopsy sample, scraped out the rest, then cauterized the wound. Sounded funny, smelled bad, but didn't hurt. Put a bandage on it and told me that we were almost certainly done with this adventure. I figured out a carcinoma blog would likely be much shorter than a CLL blog.

Then to make the week even better--and under the heading of cosmic payback--I fell victim to an accident of a nature for which I had previously mocked others with a similar fate: My cell phone did a Back 2 1/2 Somersaults in the Tuck Position into the toilet this week. After hanging on valiantly for a few days, and even seeming to have staged a full recovery, it succumbed to its injuries Friday morning. I went to the AT&T store today and discovered today that, completely to my surprise and totally against my norm, I had taken out insurance on the phone. New one should be here in a few days.

Beyond that, DC had an earthquake, BP plugged the leaking well (maybe), and we finally got some rain. As I said, an eventful week.

2010-07-10T11:24:00.001-04:00

New summer haircut

Meeting with Dr. Cheson: Latest Status

2010-06-30T11:19:00.005-04:00

You may be asking (as my mom did), "Why is there a picture of the Iwo Jima Memorial of the flag raising on Mount Suribachi on your blog?" Excellent question! When I leave Georgetown, I go home over the Francis Key Bridge, through the city of Arlington, and down the George Washington Parkway to get home. Everytime I take the onramp to get on the GWP, I pass this statue. I've probably passed it 30 times or more over the last year and a half, and I've never stopped to see the memorial. Wednesday was a beautiful day, I was out of my appointment before eleven, my lunch "date" with my friend Elena had been overcome by events, and I found myself with time on my hands. So I stopped. It is a beautiful memorial with several informative plaques around. I learned that of the six men depicted (five Marines and one Navy corpsman), three subsequently died on Iwo Jima. Anyway, it was a neat place I've been meaning to visit, and now I have. It seemed like an appropriate pre-Independence Day picture

On the the biopsy read:

This is where we are. I am not yet in remission, but we've beaten the living crap out of the CLL. The marrow biospy yielded no visible structures associated with the CLL, and the flow cytometry--which measures things at the microscopic cellular/chromosomal level--show a less than 1% involvement of the CLL still in the marrow. Consider that when this all started, my marrow was over 50% involved. Consider also that for some patients, merely stopping the advancement of the disease is considered a win. This is pretty good news, and we're not sure that the Revlimid has finished doing it's thing. I still have enlarged lymph nodes, but these are significantly down from where we started. I'm hoping for a comment from Nurse Louise to put this in some perspective for me.

Bottom line: we are now in "observation" mode. My next appointment is in three months.

Anyway, I'll soon be hitting you all up to sponsor me in Dr. Cheson's 50-mile Lymphoma Research Bike Ride this October. Help me stay on this guy's good side.

Have a happy 4th.

2010-06-30T11:18:00.001-04:00

2010-06-18T12:02:00.001-04:00

Father's Day Picnic

Exercise in Frustration, Georgetown-style

2010-06-15T21:33:00.004-04:00

Quick and dirty (and my fault (kinda)): Had a 12:30 appt. with Dr. Cheson to go over the results of last week's biopsy. Got there early and figured I'd have about an hour wait because of the time of day. As a result, I had not arranged a backup pickup for Robbie. By 1:00 I had discovered that the lady on the bench next to mine had an 11:30 appt and the three other folks around us shared my 12:30 slot. At 1:35, the lady with the 11:30 was taken in the back and I had learned that I was in last place of the 12:30 folks. By 2:15, I knew there was no way I was going to see Cheson and pick up Robbie on time. Me? Pissed? I knew that Peggy or Kath or Mindy would have picked Robbie up, but I hadn't prepped Robbie, and I remembered how freaked Elena's son David had been when we once picked him up unannounced. Besides, I wanted to register my displeasure the only way I could--by leaving.

Fortunately, I did run into Jenny, the Trials Coordinator, as I was about to leave and got the unofficial word: still showing progress, bad cell counts down in marrow and bone sample, but still present along with continued presence in some nodes. So I'm better, but not in remission yet.

Jenny is setting me up with another appointment in a couple of weeks, so hopefully then I'll get the answer to "What next?" You'll know shortly after I know.

[And to put things in proper perspective, a year ago today I was basically in an induced coma and on a respirator. Comparatively, this isn't so bad.]

Robbie did Good in Church Today

2010-06-13T20:47:00.004-04:00

Someone at church suggested I blog this, so I will. Today was the annual final performance of the church choir until September. We performed our traditional final piece called "River in Judea", a gospel song we do only because Alan E. insists. We did the piece as a post-communion offering, and against my better judgement, I brought Robbie over from the nursery before we performed. After threatening Robbie with dire outcomes should he make noise during our performance, I brought him over. I told him he would not be allowed to play his new favorite Iphone game "Pocket God" if he made noise. He agreed. He took communion with the choir, then returned to our pew. We sang (making only a few mistakes) and he was great. After we finished, he said, in a voice loud enough for the entire congregation to hear, "Daddy, I love how you sing!". When I joined him in the pew, he followed with the question, "Do I get to play Pocket God now?".

As we speak, he is playing Pocket God. What can I say?

Happy Birthday

2010-06-11T23:08:00.002-04:00

To all who helped get me through this last year, thank you for the gift of this day, this birthday. Best gift I ever got. (Notice I updated the profile).

Crossing into Idaho

2010-06-11T14:52:00.003-04:00

Get your motor runnin'
Head out on the highway.
Lookin for adventure
And whatever comes our way...

An Anniversary

2010-06-10T20:34:00.001-04:00

A year ago today I was in the ICU at St. Mary's hospital, and was less than 24 hours from being transported to Georgetown for the fight of my life (literally). Tonight I'm walking with Robbie (well technically he's riding) on a sultry early-summer evening. This is better. Thanks to all of you who helped so much this last year. Gotta catch up to the Robster now.

At Georgetown

2010-06-08T17:33:00.002-04:00

First, thanks to Kath and Peg for acting as stand-by Robbie-grabbers this afternoon should my schedule have gone south. Turned out that their services weren't needed, but their willingness to serve is greatly appreciated.

It's said that the sense of smell is the most evocative, the most memory-invoking of the sense. As I sit here in a waiting room, waiting for my CT scan, I can verify. On the wall here are pump dispensers of Endure Advanced Care waterless hand sanitizer. On a whim, I used some on my hand. I am now on a olfactory magic carpet back to last Summer and the hell that was. It's weird, because even knowing the phenomenon doesn't help with the flood of angst that so unexpectedly accompanied that scent. And it's not stopping--I'm going to have to wash my hands to remove the smell and drive the monsters back underneath the bed. Tomorrow I go to see Robbie's school play, the play I left last year to go to the emergency room at St. Mary's hospital. Circumstances are quite different this time around, but the smell of the hand sanitizer brings the specters of those two week around. All the sudden, I'm anxious to get the hell out of here.

This morning's marrow draw went as expected. The "Owiee" factor was a little higher than normal, but the doctor performing the procedure was nice. For the "Nick at Night" viewer, the doc looked like the older sister of Victoria Justice from the "Victorious" series. Very nice, very competent lady. Once we established that we didn't need me to don a robe for my modesty's sake, I assumed the position and we went to work. Only fly in the ointment so to speak was that I had taken asprin this morning, so I was a little more of a bleeder than would have been ideal. Every time I showed the slightest evidence of sensitivity (not from an emotional standpoint, but from a physical) she nailed me with more lidocaine. Good samples.

LATER, From home: The CT scan was non-eventful, though we did have to add another bandage over my biopsy wound, as it had bled through.

The schedule was tight on both ends: dropped Robbie at 7:45, reached the check-in desk at 10:05 (for a 10:00 appt.), donated another 13 vials of blood to the clinical trial at the lab, and was being marrowed out by 10:30. Got out of the CT scan by 2:30, in time to pick Robbie up at daycare at 4:30.

I'll go in next week to get results, but my gut tells me that we're still working towards remission, but that I'm not remissed just yet. Not setting myself up with too many expectations. Keep those prayers coming, though.

LOVIN' that Berry Smoothie

2010-06-08T14:47:00.002-04:00

Better by the quart.

Heading into New Jersey

2010-06-05T15:41:00.004-04:00

Here's an action shot of me crossing the Delaware Memorial Bridge into New Jersey, on the way to the house of my friends, Gary and Louise. Louise is a clinical trials coordinator in Absecon, NJ, and it was she who had invited me up to speak at a Cancer Survivors' Day event. While there I got to catch up with their two lovely daughters, one a college girl just back from Summer in Italy, and the other a soon-to-be-highly-recruited high school rower. Scary that I knew one as a four year old and remember when the other made her debut in the world. My talk was very well recieved by the audience of about 60 who heard it. Topic was "Why You Should Keep a Blog" and I referenced all of you (though not by name) in the talk. I actually was invited to come back to address a different group later in the summer. Gotta come up with a fee structure.

Liz is off on her big Motorcycle Adventure. She's started a blog about it (copy cat) and I'll post the link soon.

Tomorrow is Biopsy/CT Scan day for me. I have to get in touch with my emergency backup Robbie Pickup people in case I get stuck up town.

All for now.

Medical Appointment Update

2010-06-03T06:39:00.001-04:00

The marrow biopsy has been rescheduled for next Tuesday, followed by the always popular CT scan (mmmm.....Very Barry Smoothie), for 10:00 a.m. and 1:00 p.m. respectively. I'll probably be contacting a couple folks about acting as backup pickup for Robbie Tuesday afternoon.

Didn't make it to the Doctor Yesterday

2010-05-26T17:30:00.000-04:00

Hi all,

Quick note to let you know I did not make it to Georgetown yesterday for my bone marrow biopsy. Instead, I woke up with a crick in my neck that turned almost completely debilitating. It took me about 45 minutes just to get dressed--I knew there was no way I was driving in DC traffic with that neck. Several hundred mg of Ibuprofen and a day later, I have pretty much full motion back in my neck and could drive today, had my appointment been moved to today. Instead, I'll wait for Jenny to let me know when my new appointment will be. I'll keep you posted.

Tim

The Last Revlimid Capsule

2010-05-18T02:13:00.002-04:00

Another Milestone

2010-05-17T23:21:00.000-04:00

As many of you might guess, and some of my long-term friends know beyond all doubt, I have an incredible capacity to sweat. Don't know what it is; maybe a survival skill developed as a farm boy in South Louisiana. Why is this bit of TMI pertinent you might (or might not) ask? Well, this evening I attended my first Ashtanga yoga class at College Park Yoga here in Orlando, where I'm spending the week for work.

For those who don't know, Ashtanga yoga is named after the Hindu diety Lord Ashtang, the very sweaty cousin of Lord Vishnu. OK, it's not. But it is known as a style that emphasized raising "body heat" through a lot of movement. Add to that the unairconditioned studio which had baked to a nice mid-nineties temperature and let the torrents flow. If you don't like descriptions of large, sweaty men (easy, Meno), skip the next paragraph.

It got so bad halfway through the class, I had to flip my mat over. The mat, which is supposed to be sticky, was so sweaty that I was slipping on it. I was using hand towels to dry parts off in stolen moments between the poses. When we finally finished after a series of poses on our backs, I literally had to mop up a pool of sweat off my mat. I'm going back Wednesday night.

Welcome back to the perspiration-sensitive crowd. Now the milestone: if you look back to December 9th, you'll find the entry where I detailed taking my first Revlimid capsule. Tonight, I take my last Revlimid capsule. After this, we go into monitoring for a while to see what effect the drug had, to see if it's ready to go to Phase III of the trial process. So here we go.

I have opened a bottle of Gatorade G2 Low Calorie Fruit Punch. I am opening the Revlimid bottle. The last capsule is in my hand. I just took a picture of it which should appear as a seperate post in a few minutes. This is what Revlimid looks like. It's in my mouth. I just swallowed it. Now we're into monitoring.

Won't you join me?

What a Great Morning!

2010-05-15T12:50:00.004-04:00

Do you believe is signs? I'm starting to. I had heard at class on Thursday there would be a sunrise yoga gathering this morning at the wharf in Leonardtown and resolved to attend same. Although the morning was beautiful, I wasn't entirely in the mood when I started out. As I turned out of our development onto the main highway, I noticed from the corner of my eye, standing in the field across the way, what I first thought was a vulture. A second look revealed that this particular vulture had a pure white head and a large hooked beak. It was a fully grown, mature bald eagle, just standing in the field about 20 yards off the road. I'm not sure why, but I have for a long time had an affinity and what feels like a connection to these birds. They are almost my totem. I pulled over on the shoulder opposite the bird and watched. He did not move, so I got out of the car to make sure he was alright, thinking I would call Natural Services if some yahoo had shot it. Nope. It saw me walking towards it, looked a little pissed off and indignant (bald eagles are good at that), and flapped away into some nearby pines. I swear the tail looked about 2 1/2 feet across.

Got down to the wharf where a crowd was just beginning to gather. (The folks in the adjacent picture were not in the class, this is just a picture of the wharf I lifted from the web. Also, you can't see the incredible view of Breton Bay that is afforded here.) A great blue heron flew overhead, landed in the nearby mud flats, and began probing for breakfast. Red-wing blackbirds declared the edges of their territories from the cat-tails. People began to arrange their mats radially around the flagpole in the middle. With practically the whole area to choose from, I of course put my mat in a spot where I would be looking into the sun. My friend Tracy was teaching today, and there were about five other teachers moving around correcting postures and helping out. The cost for the class was a donation to the local soup kitchen. As we got closer and closer to the 7:30 start time, more and more people streamed in. By the time all was said and done, there were over 65 people at the class. We spilled out of the 'compass rose' you see in the picture; people filling the walkways leading up to the center. There's no electricity at the wharf, so unlike most classes, there was no music. Instead the background 'music' to Tracy's teaching was the songs of birds and the splash of fish jumping. The temperature was perfect, there was a cool breeze blowing to keep the bugs down, the sky was blue with just a few puffies, and Tracy taught a really great class. There were folks of all levels and ages, including several people for whom this was their first yoga experience. After the class, I told Tracy that in some ways I felt sorry for the 'new folks', because I believe taken together this was the single best yoga experience I've ever had.

One more sign: while waiting for class to start, I was talking to a fellow student when someone said, "Hey Tim, you have a passenger." There was a beautiful orange and black butterfly that decided that where it needed to be was on my feet. It kept flying away and returning, landing on my arch or my ankle over and over again. It didn't leave until we finally started getting active on the mat.

It was a good morning.

That said, I have three more pills to take until I'm through with my current chemotherapy. 15 more milligrams of Revlimid. When I'm done, that will have been 21 pills times 5 mg/pill times 6 cycles. 630 milligrams of Revlimid. That's a little over 2 hundredths of an ounce. And it might just drive my CLL into remission. Small miracles. I go back in a couple of weeks for another (yawn) bone marrow biopsy, then we start monitoring. Hopefully, I'll see another bald eagle on my way to the biopsy.

Tattoos

2010-05-09T20:43:00.006-04:00

I am well past 'mid-life' crisis age. You will not see a Porsche in my driveway (though if my friend who recently bought the Carrera S would offer me for a ride, I'd wouldn't say no), you won't see any self-inflicted piercings, or any of the other accouterment of the middle year grasping. I am, however, seriously considering a couple of tattoos. With my 52nd birthday looming on the near horizon, I'm not worried about any later regrets. I have two tattoos in mind. I'm deciding whether or not to share what they might be, or just surprise you all later with the pictures.

OK...one is the symbol 'Om'.

Yes, that 'Om'. The stereotypical Om that everyone who makes fun of meditation or yoga always brings up. But do you know what 'Om' symbolizes? According to some, if you took every sound in the universe--the whimpering of the tiniest child, the evening song of the crickets, the explosions of a volcano, cries of ecstasy, wailings of lamentation, the soundless roar of a supernova, the quiet of a mother's kiss on her new-born's brow--and blended them all together, all at once, the resulting sound would be 'Om'. It is the sound that ties together all the elements of the universe. It is the sound that ties you to me. Over the last year it has helped me tremendously to think that I am tied to everything that way. No matter what path my life takes, I am part of the Om--the Om that was there before me and the Om that will persist when I am gone. Around my neck I've worn a silver pendant with the Sanskrit symbol for Om for well over a year now. I think I may make it more permanent.

The second tattoo is more personal. It involves something that is special to Robbie and me, a symbol is you will. If and when I get that tattoo, I'll share it with you. If Robbie wants to get the same tattoo when he's 18, I won't stand in his way (God willing, I'm still here to stand in his way.)

Thanks again for your thoughts, your prayers, and the positive energy you send my way. It took this encounter with CLL to discover how blessed I truly am. If you are reading this, even if we've never met, you are precious to me. The light in me honors and salutes the light in you.

And Happy Mother's Day to my mom, Normie McMichael. Thank you for everything, including your contribution to my sense of humor. Thank you to my wife, Liz, mother of the wonderful part of my life, that above all else keeps this life worth living.

Give that man a push mower!

2010-05-08T17:19:00.002-04:00

Start 'em early, I always say.

Multimedia message

2010-05-05T18:47:00.001-04:00

Robbie riding his bike at the original Navy Test Pilot School building.

Multimedia message

2010-05-02T12:45:00.002-04:00

Shopping for shorts at Penny's (click on the picture, blow it up, and look at his eyes. Did you ever see a look that was more expressive of the thought "Daddy, you are a loon.")

Starting Cycle Six, Seeing a Friend, and Boys' Day Out

2010-05-01T13:02:00.009-04:00

Today was an absolutely beautiful Spring day. With Liz in Washington state again, the choices were either a) stay home and mow the yard or b) take Robbie to the Smithsonian American History Museum to see the locomotives. Which do you think I did? (Picture is attached as a clue). I'll mow tomorrow afternoon after church.

Tuesday was my well-baby visit for Revlimid Cycle Six--the last Revlimid Cycle. After being marked fit for duty by Dr. Cheson, we talked about next steps. Apparently--as far as the trial goes--this is it. We do 21 days of Revilimid then go into monitoring. If my next bone marrow sample still shows CLL, we monitor. It seems this drug can take a while to work. One trial member finished with relatively little improvement. He was tested for several months with no change. Finally, Dr. C. was bringing the gent back in to determine next course of treatment when his tests came back "CLL totally gone". He was all the sudden in full remission and has remained so for a year. Caveat: this guy was a Jesuit priest, so he may have had other factors working for him.

After my well-baby (and with Liz's full knowledge) I rendezvoused with Ms. C., a high school friend with whom I had reconnected through Facebook. C. graduated a year behind me and we hung out periodically afterward. While at the time I desperately wanted to call what we were doing "dating", it is probably more accurately described as "her letting me buy her dinner, but in an entirely platonic and non-mercenary way". We corresponded for much of my freshman year at LSU, then drifted apart. She did hold the record for quite some time for "most expensive meal I've ever bought a girl" and is still the "first girl who ever talked me into eating a raw oyster". I didn't know. I chewed. I don't like to think about it.

In the interim, she has finished college, finished law school, gone to work for a major corporation whose name you would recognize in a heartbeat, married what sounds like a cool guy, and now works as a lawyer and lobbyist for the aforementioned corporation. The HQ of the corp. is just a few miles away from Georgetown, so after my doc visit I drove over and we had a late lunch at Panera. It was great catching up and even greater that the conversation consisted of things other than 'remember when such and such..." (though some of that did happen). We both agreed that social networking is fabulous and that we can't understand the great reluctance of some of our peers to take advantage of same. We've lived in close proximity for fifteen years and only discovered it about two months ago. Love that Facebook. Anyway, we ate, we talked, we laughed, we promised to stay in touch. I walked her back to the door of her building, where she gave me a quick hug before heading inside. It was just like the old days. [This is where if I used emoticons in the blog, I'd use a smiley.]

Anyway, all continues to go well, but remembering that last year around this time I was saying similar things, I ain't getting cocky. No part of me misses being fed through a tube in my nose and I'd just as soon avoid it. I figure I've got two birthday parties coming to me this year, but I'm not bitching about the present I got last year and the 'present' I continue to enjoy today.

Roadside Attraction

2010-04-25T07:42:00.005-04:00

After yoga in Alexandria yesterday at the Pure Prana studio, I made an improptu decision to visit my brother and sister-in-law outside Richmond so I could finally give them the Christmas present I've be hauling around in the Mini for them since December. Drove straight down, enjoyed dinner at a great little restaurant near their home, and left early this morning in time to make choir practice at church.

On the way home I spotted a sign pointing to the site just south of Port Royal, Virginia, of the farmhouse where John Wilkes Booth was killed. I had read about this in an interesting book called "Assasination Vacation" by Sarah Vowell. As Ms. Vowell had reported, the site is between the north and southbound lanes of Route 301, accessible only from the northbound side. After parking on the side of the road, I followed a well-worn path a short distance through the woods to a small clearing. There is no hint of the house and barn that used to be there. What I did find was the marker stone shown above. I Googled, but found no reference to the "Twenty First Century Confederate Legion". I'm guessing they were not fans of the recent Health Care initiative. Also, no clue about the significance of the pennies, other than they have Lincoln on them and were mostly facedown.

Meditation, Malas, and Related Thoughts

2010-04-20T19:14:00.023-04:00

Most mornings I awaken at 5:00 a.m., go downstairs for 20 minutes of yoga with Rodney Yee, get a shower, then meditate for 15-20 minutes before I start my day. The picture shows the dormer in our back bedroom that I've set up for meditation. This is my little altar. Yes, I use incense, and I'll explain why it really is useful some other time if you're (the collective 'you're') interested. In the picture you can see, second from the left, what looks like a ring with a yellow blob on it. This is a mala. Think of a mala as a meditation rosary, but without all the "Ave Marias" and the "Pater Nosters" (how's that for a protestant boy?). Here's some mala info I lifted from the web:

"What is a Meditation Mala?: A mala is a string of 108 beads with one bead as the summit bead called a 'sumeru'. It is a tool used to keep your mind on the meditation practice. Malas are generally made from different materials such as tulsi (basil) wood, sandal wood, rudraksh seeds or crystal.

Why use the Mala?: Meditation can be quite a tricky practice because the mind is like a naughty child. By its very nature, the mind tends to wander off during the meditation practice. If ones energy is low at the time of meditation, falling asleep can result. If the energy is too high, fantasy and distraction become the barriers. At such times, the mala provides the much needed anchor. The mala beads are moved in rhythm with the breath and the mantra, so that both-sleep as well as excessive mental distraction-are prevented by this action upon the beads.

So I use my mala (sandal wood, thank you very much) to anchor my oh-too-active mind during meditation. Other than edification, why do I share this? Back to the summit bead: the summit bead is not only larger than the other beads, but it also has the tuft of yellow yarn you see in the picture. You start at the summit bead and work your way arround. When I first meditated with the mala, I was overly conscious of the summit bead, finding myself wondering where it was, how close to it I was getting. When I would actually feel the summit coming around in my hand, I had to fight the temptation to increase my rate of breathing to "finish" faster.

Why is it I get so consumed with the finish, particularly once the finish is in sight? Why do I lose interest in where I am as I start to focus on where I'm heading? Why the hurry? I'm learning to treat the summit bead like any other bead. From that I hope to learn that while endings are inevitable (without getting too dark), placing too much importance on the ending takes me away from 'here', and 'here' is where I need to be. This is where all the good stuff is happening.

Ending on an up note: every month a nice lady from North Carolina calls me about my Revlimid. She makes sure that I'm not sharing my Revlimid, that I'm not donating blood or sperm (there goes that source of beer money), and that I'm not having unprotected sex with a woman with child-bearing potential (Revlimid is a first cousin of Thalidomide). I sure hope the nice woman works with the clinical trial, othewise she's just damn nosy. Anyway, after the survey we talk. This week during our monthly conversation, she started talking about some incredible success they were having with Revlimid, really getting excited about it. Saying "You're in the right place at the right time!" She may have dropped the word 'cure'. She remembered she was talking to one of the guinea pigs, so she stopped, saying "I really can't say more." I'm not going to get too excited, but I'm taking from this they are seeing some good results from this trial. It's tempting to blow this out of proportion, but I'm determined not to look ahead to the next bead. I'm savoring the bead I'm holding now. My 3' 11" bicycle-riding bead.

Namaste

P.S. I have no idea why the font size on this is all over the place. Can't fix it. Oh well.

Bike Riding Boy!

2010-04-20T19:09:00.000-04:00

Proud papa time: Yesterday, just 24 hours ago or so, Robbie had never ridden a bike without training wheels. Never. Yesterday, about 23.5 hours ago, he decided he was going to. So he did. Liz helped him a little at first to stay upright, but he headed out and never looked back. Today, he's riding like an old pro. He starting and stopping by himself. He's making tight turns on half the width of our narrow street, riding around barely skirting the edge of the cul de sac, really testing out the edges of the envelope to see just how far he could lean over without scraping the pedals. He is having a blast. I'll post a picture or two when I get the chance. I'll also post some thoughts I had while meditating the other morning. But this is Robbie's post--Robbie the bike riding boy.

P.S. He's lost two baby teeth in the last four days. Where is my little boy going?

We're on Youtube!

2010-04-12T19:07:00.000-04:00

The Family McMichael is on Youtube: I'm there along with Liz, Robbie, and the other people watching the P-8A land at Pax the other day. Robbie is in the yellow, purple, and green striped shirt, Liz is in a brown jacket and is waving, and I'm wearing a green shirt (you see us all from the back): http://www.youtube.com/watch?v=AqdeMpo09Vs

Thoughts while mowing

2010-04-10T19:10:00.001-04:00

Happy Spring to you all. I know it's Spring, because I mowed the lawn today. That was after I went to Ann Hunt's 7-9 a.m. Dynamic Flow yoga class and took Robbie on a two-mile walk.

What struck me while mowing was that last summer--after my June adventure--I didn't have the strength to mow the lawn, much less all the other stuff I did today. I reflected gratefully on the body's ability to bounce back from adversity and to heal itself.

A personal note to other CLL afflictees: if given the chance to participate in the Revlimid trial, do it. Just do it. One pill a day, 21 days in a row. No needles, no IVs. And it seems to be working. I have all the energy I need to lead a very active lifestyle and so far I haven't had one adverse reaction that could be attributed to the treatment. People sometimes ask me if I pray for a miracle--I tell them that I'm participating in a miracle and am already receiving the benefits of a miracle.

One other: I got to see some no-kidding Naval Aviation history today. The P-8A Poseidon, the Navy's newest anti-submarine warfare aircraft and one that has consumed major parts of Liz's (and Robbie and my) life for the last eight years, arrived in Pax River for the first time around 3:30 this afternoon. We were there at the arrival end of the runway to see it land--it passed maybe 100' above our heads on the way down to the runway. There are only so many times that a new airplane is introduced into the Navy, and only once per airplane that it comes to Patuxent River for testing for the first time. There was quite a crowd with us to greet the airplane, including family members of folks flying on the Poseidon. Lots of screaming and cheering as it settled down to the runway for landing. Don't tell me that people here are blase' and that they don't care. We were there. We saw it land. We cheered. It was cool. I'll be posting a picture soon that a nice lady there got of Liz and the airplane as it flew by.

TTFN,

Tim

Mr. Gap Tooth and the End of the Well Baby Visit

2010-04-03T22:34:00.003-04:00

As you might have guessed from the picture above, Robbie finally lost one of his front teeth. Actually he lost it last week; we were only recently able to get a picture of it.

Picking up from my last post, we left our hero in the examination room at Georgetown. Shortly afterward, Katherine (even more pregnant than last time!) came in, examined me, and marked me fit for continuation in the trial. The only 'news' is that after the sixth cycle (I'm currently on the fifth), I get another bone marrow sample taken (Yawn...).

I had to run up to the pharmacy on the 7th floor to get my Revlimid. They would have sent it down, but it was an opportunity to visit with the ladies up there. It also turned out to be an opportunity to get a free lunch.

I was kinda hungry as I headed to the elevators, already thinking about where I was going to get lunch. Got on board elevator #1 and held the door for a white-coated orderly pushing a cart. On the cart (I miss nothing) were the brown paper lunch bags I remembered so fondly from my infusion days. After holding the door again on the 7th floor, I followed the lunches into the area, where I ran into Mercedes, Sonia, and Marta. After appropriate greetings and the showing of the pictures of the boy, Marta invited me to grab a lunch. Roast beef sandwich. The pharmacy will only give the drugs out to hospital employees, so while Mercedes checked on my Revlimid, I sat in Room 11 eating my sandwich. Life was good.

In Progress Well Baby Visit

2010-03-30T10:43:00.001-04:00

Got here at 10:00 for an 11:00 appointment. The waiting room was virtually empty (I was going to say 'a ghost town', but considering the venue...).

Anyway, got vitals taken and am happy to report BP: 110/70 Pulse: 71. The walking, yoga, and meditation are paying off.

Got into the exam room by 10:20 and have spent the time reviewing the new NAVAIR Fraud, Waste, and Abuse instruction. Turns out I'm pretty good at Fraud and Abuse, but I may have to go in for remedial Waste training. I understand the training is given down at our Cherry Point site.

Still waiting for Katherine, but to be fair it is still 20 minutes before my appointment time. Still planning on finding the meditation labyrinth at the Georgetown Waterfront Park afterwards, then yoga tonight. Full day.

Testing a Method of Using Google Earth Maps for Illustration

2010-03-29T15:59:00.002-04:00

If you see this, you're timing is great--if it works, I'll be deleting it almost immediately. OBTW, this is the entrance to Georgetown I use almost everytime I go up there. Parking is to the left before the guard shack, and the windows surrounded by the black box are the windows of the seventh floor trials infusion area where I used to go for chemo. These were the "good view" rooms.

Revlimid Mystery Revealed!

2010-03-27T15:37:00.001-04:00

Okay, it doesn't really rate the National Enquirer headline, but the good nurse Jenny did explain why I'm picking up my Revlimid at the hospital on Tuesday instead of having it shipped here. Turns out that one of my fellow trial participants started Revlimid with a white count that was very low (and the Revlimid would only make it lower), so they are requiring all us trial participants to have labs at the hospital in order to get our pills.

On the plus side, my blood counts have been great for the last few weeks. No worries.

Plenty of exercise today: I went to my bi-weekly 1 hr 45 min Dynamic Flow yoga class. Not nearly as difficult as the class two weeks ago (different instructor) and I wasn't the worst one in the class. I actually made it through the whole thing without taking any breaks. I'm not back to where I was before the hospital adventure last June, but I'm happy with the progress so far. When I got home, I was informed by Robbie that he and I were going on a 3-mile walk. So we did. I've got some liquid, malted calories coming my way tonight, so if you're in the local area and want to stop by the Olde Town Tavern around 8:00 p.m., I'll buy the first beer. If there are more than one of you, I guess you'll have to share.

On Tuesday, after my well-baby visit with Katherine (who is just about a month from her own well baby) I'll be taking the opportunity to visit the Georgetown Waterfront Park and walk their meditation labyrinth. Over the last several weeks, I've been starting every day with 15-20 minutes of meditation in a dormer I've partitioned off for that purpose. I'm intrigued by walking meditation in general and specifically in the meditation labyrinths, and am amazed at how many there are in the area. "How do I find a meditation labyrinth in my area?", you ask. Well, how about at http://labyrinthlocator.com ? Got to love the internet. For the really physically underwhelmed, you can buy finger meditation labyrinths that you hold in your lab. So Tuesday afternoon I'll be trying out my first labyrinth meditation.I've really gotten a lot out of my seated meditation and have high hopes for this venue. I'll let you know how it works out.

Have to Share

2010-03-24T20:15:00.005-04:00

This is an exerpt from an email that I received from a woman with whom I work. She started following my blog before she ever met me. I actually got a little choked up when I read this email, and I've asked permission to use it in my upcoming presentation. I wanted to share it with all of you. This is the realization of one of my greatest hopes for my blog. It may be that some specific readers will recognize their situation. Thank you so much for sharing--I'll try to maintain your anonimity.

"...I shared your blog with one of my best friends...whose father happened to be diagnosed with an aggressive form of CLL last Spring. Her father is more of a private person who struggled with how to tell those around him that he had cancer especially when the outcome of his diagnosis was uncertain. Everyone responds to crises differently, some are better able to process information by sharing it, others feel the need to keep information to themselves until it reaches a point of criticality. Both are valid points of view, but in a situation such as this it can be very difficult for the loved ones of someone who is less likely to communicate about their experience. Reading your personal accounts was helpful to her because it gave her the perspective of someone going through the first person experience and she thoroughly enjoyed your upbeat tone and positive outlook. She eventually shared your blog with her father and her mother and it helped create a dialogue about how one can inform those they love about their struggles without the perception of throwing a personal pity party. Her family continued to follow your blog and her father also found the perspective of another person to be helpful. CLL is such a broad disease that it can be difficult for someone with the diagnosis to know what to expect and therefore know what to share or how to do so. It is one thing to look at survivability numbers and another thing to know the story of real life person. In that sense you gave her family support of learning more about the disease, knowing what they might expect during her father's treatment, and how someone else has coped with the diagnosis. I just wanted to let you know that through your blog you have probably helped more people than you know, and some you may never know. BTW - My friend's father underwent more traditional treatment for his CLL/ Leukemia but is now doing very well. [My friend] is copied on this email because I asked her permission before sending it and most of what I have written above is plagiarized directly from her. Not to mention that the discussion we had regarding your blog actually contributed a lot towards her letting me know what was going on in her life in regards to her father's illness and in that way was a really good vehicle for communication between us as friends."

Wow. Just Wow. Thank you.

P.S. I've never personally looked at the survivability rates. In the words of the great Han Solo, "Never tell me the odds."

Robbie's Day Off

2010-03-24T13:37:00.003-04:00

Robbie has the rest of the week off from school (Surprise!), so by definition I have the rest of the week off from work (except for my constant Blackberry missives--I developing little, tiny calluses on my hunt-and-peck fingers.)

We were going to go to the Smithsonian, but he popped a fever last night, so I limited us to local area travel. Gorgeous day for most of the day. We went to Solomons Island and did some beach walking, then to some local sculpture gardens.

While at the garden, he napped on a sculpture and I was able to get in twenty minutes of meditation. I also found out by phone that my next shipment of Revlimid has been hijacked and is being sent to Georgetown instead of here to me, per direction of Jenny Crawford. I don't like change--it normally portends. I'm curious about just what this is portending. My next appointment (with Katherine) is next Tuesday, when I'm scheduled to start Round 5 of Revlimid. I'll let you know what new adventures await our hero.

Final Headshot

2010-03-23T20:38:00.004-04:00

This is for the folks in New Jersey putting together the advertising for the Survivors Day event where, against all good advice, they've asked me to speak.

Go ahead, Meno. You know you want to. Make that comment.

Bio to go with Headshot

2010-03-23T20:37:00.001-04:00

Tim McMichael was born in Baton Rouge, Louisiana in 1958, and was raised on a cattle farm in the little rural Louisiana town of Amite. A 1980 graduate of Louisiana State University, Tim served seven years in the U.S. Navy as a Naval Flight Officer, flying in the backseat of the F-14 Tomcat. After getting out of the service in 1987, Tim continued to support the Navy as a civilian. He currently works for the Naval Air Systems Command, where he is Chief of Staff to the admiral in charge of Research and Development.

Tim was diagnosed in February 2009 with Chronic Lymphocytic Leukemia and is now participating in a phase II clinical trial at the Lombardi Cancer Center of Georgetown University. He is currently well on his way to remission.

Tim lives in Southern Maryland with his wife Liz and their six-year-old son, Robbie, who Tim quite modestly describes as the smartest, funniest, and most beautiful child ever conceived.

Spring has Sprung (not original, but true)

2010-03-20T16:45:00.004-04:00

Typing on my blackberry from the playground at St. Mary's River State Park, where Robbie and I have traveled--he on his bike, me on foot--on this bee-yoo-tee-full Spring day. I am in t-shirt and shorts in celebration of this 75-degree, sunshine-filled, soft-breeze-blowin' day (by the way, I'm trying to set a record for most hyphens used in a blog entry). It's glorious.

One of the tenets of Buddhist thought is to live in the "now". If you spend your life fretting about the past or worrying about the future, then you are missing "now", and when it comes down to it, "now" is all you have. Life is a continuous cascade of infinitely short "nows". Days like this make it easy to stay in the now.

P.S. - - - - - - - - - - - - - - - - - - - - - - - There, that ought to nail down the hyphen record.

Homework Assignment for YOU!

2010-03-18T10:59:00.003-04:00

All,

I've been invited to speak to a Cancer Survivors' Day gathering in New Jersey in early June. The title of the presentation will be "I Didn't Order the Lymphoma" and the topic will be blogging and why it's important. I hope to make it humorous (bet that surprises you).

What I need from all of you is some input on what your favorite/most memorable blog entries have been. I'll probably be reading many of the entries during the talk, and I want to make sure I get some good examples.

If you would be so kind, please comment back with the dates of your favorite blog entries and maybe some idea of what it was that made it stick in your mind. It doesn't have to be the funniest; it could be the hospital blogs that gave you information that you might not have otherwise gotten.

If you don't want to comment or haven't figured out how, please email me your inputs at timothy.mcmichael@navy.mil.

Thanks much,

Tim

HEADSTAND!

2010-03-16T20:47:00.001-04:00

Hi all! No big news, but a personal yogistic breakthrough. At class tonight (Tracy teaching, Justin and Yoko the other students), I finally met one of my personal yoga goals--I did a headstand. In fact I did several headstands, including one that didn't use the wall as a back stop. I did get an assist from Justin, for which I was very grateful. Also, in what may be a first in North American History, it was a yoga class with more male students than female students. I was part of history. Just wanted to share.

He's going to Slytherin

2010-03-12T16:10:00.003-05:00

Although we have not yet heard him speak in Parsil-tongue, the picture above proves that Robbie can unhinge his jaw to eat pancakes. That snake-like tendency alone should land him with Snape and company when he gets to Hogwarts.

Got my ass absolutely handed to me at a two-hour Dynamic Flow yoga class this morning. Of the 30 or so students there, I definitely positioned myself for the "Most Improved" award. Don't get me wrong--glad I went, felt great when I left. But I did have an "Oh Crap! We're only an hour into the class! I could have sworn it was almost over!!" moment. It was great to see Ann H., the instructor, who is the Ur-instructor in Southern Maryland and an absolutely fabulous teacher. I knew I was in trouble when I looked around the class and saw that my fellow students included pretty much every Southern Maryland yoga instructor from every class I've taken over the last two years down here. The workout that Ann crafted (and through which she never showed a moment's fatigue) pretty much taxed them to the limit. Me? Reduced me to a gasping puddle of sweat. Never the less, wouldn't have missed it. I can only improve from here.

Liz and I took Robbie to "Cheeseburger in Paradise" tonight, where he continued to establish his Adventure Eater credentials by eating Conch Fritters. Love that kid.

Praise the Lord and Pass the Ibuprofen

2010-03-10T10:59:00.001-05:00

Nothing new medically, but went to a great 1-1/2 hour yoga class last night. I was a little nervous going in, as an hour and a half is a relatively long class, and this was labled as a "Level 1/Level 2" class, meaning it could get moderately advanced. I wasn't sure I had the strength or stamina to hang. There were only four students in the class, and the other three looked all fit and bendy.

Turns out I did have the stamina and I did have the strength (or at least 90% of the strength). GREAT teacher named Tracy, who loves getting her feet above her head. We did a really neat, different 'flow' segment that got the sweat going, worked several poses that targeted the hamstrings (ouch), and finished with half-handstand (described in my last pre-hospital post in June), shoulder stands, and finally full handstands. Well, 75% of the class did handstands. One person--OK, it was me--just couldn't force himself up into the full handstand. We were working against a wall and I think with a spotter I could have done it, but by then my triceps were shot, so it's just as well that I watched the others.

I'm pleasantly sore today and will definitely be going back next Tuesday, assuming Liz isn't on travel.

No New News (and No New Gnus)

2010-03-06T22:05:00.000-05:00

Just saying hi and telling you that I'm finally starting to believe Spring may actually come to the Mid-Atlantic States some day soon. Beautiful today, with highs in the mid-50's. That will seem cold next October, but seems downright tropical just now.

We had a family breakfast at Robbie's favorite new restaurant--IHOP. (Aim high, boy. Aim high.) Afterward, the Robster and I went on a "walk"--apostrophied because I'm the only one actually walking. Robbie is either on his bike or being pulled in our large wagon. Today he elected to ride the bike, and he rode it on a 3.75 mile loop without once complaining about the distance, even though his hands were getting cold. Really proud of him.

Medically I feel fine. I'm five days into Cycle Four of Revlimid, buoyed by the thought that this drug is doing the trick and knowing that its best effects normally come later in the treatment.

Also, I've been invited to speak at a Cancer Survivors' gathering in New Jersey this coming June. Said invitation was proffered by the Lady Louise, my friend who first suggested this blog. The theme of the gathering is "Laughter is the Best Medicine"; not sure why she thought of me. [smiley emoticon]. I'm thinking of a talk whose theme is "Why You Should Blog and Why You Should Make it Funny". I will also publish my consulting fee schedule.

Going to bed now. Nighty-night.

Vials of Blood for all my Friends! and Good News

2010-03-02T19:37:00.004-05:00

YOU ARE VISITOR NUMBER 11

Good visit today with Dr. Cheson, but more on that in a paragraph or two.

After going into work at 6:30 to get a little work done today, I left for Georgetown at 8:15. Good traffic, good parking, got there at 10:15 for an 11:00 appointment. I decided to walk the Georgetown campus for a while and do what any good son would do--I called my mother. I know that's what good sons do, because I asked my brother Wilson, who happens to be a good son. Mom and I caught up with each other, trading medical stories while I climbed the hills of G-town.

Got back to Lombardi with 10 minutes to spare. Went in, signed in, got my vitals taken, and went back to the lab to get my two vials of blood drawn. Went back to the waiting area feeling all smug. That lasted until Jenny, the trials nurse, found me and dragged me back to the lab area to fill the other six vials that she needed (she told me to call her when I got there, but I forgot.) So I ended up with symmetric bandages over matching left and right arm blood draws.

I got to talking yoga with the phlebotomist who drew my blood both times. She said she was looking for some new exercise to lose weight, so I started singing yoga's praises. Then I got yet another lesson in "have no assumptions". She mentioned that when younger she used to be a weightlifter. As will happen, we started talking about 'maxes', and I nonchalantly mentioned that while in college my max bench press was 305 pounds. With no hint of condescension, she mentioned that she used to bench 350. I believed her.

ANYway, the good news: it appears that Revlimid is doing the trick. The last marrow biopsy shows 'residual' CLL where a year ago my marrow was 50% involved. Even three months ago it was at 5-10% involved. Dr. Bai, a physician working with Dr. Cheson, could barely find any of my lymph nodes, where last year they would have been obvious to a freshman pre-med student. Of course the good Doctor himself was able to find a couple, but nothing like I've had. So it looks like this is working.

Now remember, this isn't a cure. There's not a cure. But if we can get it into remission, then I buy time until a cure is found. If/when it comes back again, we drive it into remission again. It's a long term game I'm playing. But so far it looks like this round we're making good progress. If I was drinking during the week, I'd be drinking tonight.

My Little Problem Solver

2010-02-27T17:53:00.002-05:00

Just had to share. We have two wagons--one big and one little. Robbie wanted to play with both this afternoon, which was allowed but with the proviso that he put bring both of them back in. He came up with what I thought was a pretty good solution for a six-year-old. If you click on the picture above, you'll see that he's pulled out the back 'gate' of the big wagon and used the upright to anchor the bail on the handle of the little wagon. That way he could pull both at once.

One follow-on admin note: remember the rash from three posts ago? Well, according to both Katherine and Jenny, it probably wasn't a Revlimid-caused rash. So now I have a good idea of what didn't cause the rash, I just have no idea what did. Yea!

Is that a tent peg in your pelvis, or are you just happy to see me?

2010-02-26T21:11:00.013-05:00

First a quick hello to the former Cinda S., an friend of longstanding (but not an old friend), who was the first girl to ever con me into eating a raw oyster. I did it wrong. We 'reunited' via Facebook and I just shared the address of my blog with her. Hey, Cindy!

Also, incidently, it has been just over a year since I started this blog. Doesn't seem possible somehow--then I do some reading and think, "Been a hell of a year."

ANYway, went to Georgetown yesterday for my fourth (FOURTH!) bone marrow biopsy. [ed. note: see the February 27, 2009 entry for the story of the first bone marrow biopsy. Pretty good stuff, if I say so myself] I left very early in anticipation of blizzard-like conditions, but was pleasantly surprised by a beautiful, windy morning. Arriving at G-town at 8:15 for a 10:00 appointment, I had time to wander around the student union and to coordinate by Blackberry a response to a frantic data call by my boss (thanks, Denise and Vic).

Got back to the waiting area by 9:40, got my vitals taken (BP: 126/67, Pulse: 86, Weight: Mind your own damn business), and was in the treatment room by 10:00. This is the first time I've ever been in a treatment room at the time of my appointment. There with me were all the accoutrement needed for today's hip bone penetration. As long as the lidocaine was there, I was OK with the rest. Interestingly enough, by your fourth marrow draw you can get rather blase about the whole procedure. SO there I was at 10:00, waiting for the lovely Katherine, with only the smallest of butterflies in my abdomen.

Unfortunately, Katherine's schedule had gotten rather muddled that morning and she kinda forgot that I was waiting. She finally arrived at 10:30, apologizing profusely. I told her, "That's OK. Being seen at 10:30 for a 10:00 appointment may be a record. Besides, it gave me a chance to finish the magazine article I was reading." What? You think I'm not going to kiss up to the lady about to jab a pointy metallic bendy straw in my hip bone?

Incidentally, Katherine is glowing pregnant, and is due in the middle of May. She is truly a wonderful, sweet person and a consummate professional.

Anyway, she had me lay down on the procedure table, helped me drop trou (no, thank You!), swabbed the target area, and numbed me up. The lidocaine shots were the most painful part of the procedure and in the grand scheme of things, didn't really hurt that badly. She harpooned me without me being aware that she was in the bone--it was the best of the four procedures through which I've gone. I actually asked "Are you in?" [a question guys fear above all other], to which she replied "We're already about halfway through."

There was a eight second period of discomfort while she sucked a marrow sample out of the bone, but that was pretty much the limit of the 'owwiee'. Katherine bandaged my wound and had me lay on a cold pack for about 20 minutes, during which we discussed the advantages of having a baby in the middle of May.

The good news yesterday was that the CT scan that I thought necessary was not necessary at all. Jenny--the trials coordination nurse--delivered that news. No quart of blueberry-flavored library paste to drink yesterday. I was on the road by noon and back in the office by two o'clock. My arrival surprised at least one of my employees who, figuring I wasn't coming in after such an ordeal, had parked in my parking space (did I mention that one of the few perks of my job is that I have my own parking space?). Anyway, after I had her car towed by security, we laughed and laughed. OK, I didn't have her car towed.

In a random conversation yesterday, I discovered that Rob, a guy with whom I don't work and I would have never suspected, keeps up with my blog. I'll tell you the truth (and I apologize if this seems like whining), but many times--when I'm feeling sorry for myself--I'll think, "Why write this? What makes you think anyone anyone outside of Kim, Peggy and Meno is reading it?" Then I stumble across someone who out of the blue says, "I keep up with your blog." Blows me away. To all of you, to all of you who read this, thank you. Please feel free to leave a comment--comments make me feel like a kid on Christmas morning. But even if you never leave a comment, thank you for reading my ramblings.

Without saying why, let me say that I am once again tremendously proud of my little guy, Robbie. For those keeping track, at six years and two months, he is one inch shy of being four feet tall. Be warned: he looks like his mom, but he has my sense of humor. And he has me to mentor him. I feel a little like the emperor when he first met Anakin Skywalker, but substitute 'warped sense of humor' for 'the Dark Side'.

Hope your weekend is great.

Let's Not Do Anything Rash...

2010-02-22T21:00:00.003-05:00

Before I get going with tonight's tale, I want to offer an apology to one of my friends of longest tenure, Mike F. Mike is one of the most fervent Saints fans I know. He used to usher at the Super Dome and may have been one of the first bag wearers in the days of the 'Aints. We met in Johnston Hall dormitory on our first day as freshmen at LSU, shared a suite as sophomores, were in each other's weddings, and now live within a hour's drive of each other. He introduced me to Monty Python, for God's sake. Of all my friends, he logically should have been one of the first I told. He's been one of the last. Not sure where the reluctance to tell him came from. I guess I felt guilty for not staying in more regular contact with him and his wife, Mary, and I didn't want my "How Ya Doin' " phone call to be about this topic. I emailed him tonight, explained the situation, and gave him the URL to my blog. Hopefully he's reading this. Sorry, Mikey. I should have told you--I owed that to you.

Now this weekend's exciting adventure in clinical trials:

I warn you in advance, this is not the most pleasant post I've logged, but it does actually pertain to things medical, so I'll share. Stop reading now if you don't like reading about rashes. (and sorry, I'm not posting a picture).

This weekend was a non-stop itch fest. It really sucked. Apparently, one of the side effects that Revlimid users can see is a raised rash. Actually, it's a raised rash that itches like poison ivy and wakes the sufferer from a sound sleep scratching like a dog with fleas. How do I know this? Need you ask?

What started as a small raised patch on my right flank Friday morning spread like proverbial wildfire over the weekend until it involved both my legs (with extra attention to the thighs), my arms, and enough hard to reach places on my torso to round things out nicely. Even with Benadryl, I couldn't sleep more than two straight hours on Saturday night. I was truly starting to despair--at worst, this could mean that I would be out of the trial. The rash hung around all day Sunday, seeming to move around from leg to leg, appearing and disappearing. I called and left messages with the folks at Georgetown that this crap was going on.

Liz did some Googling and found that this rash is common among Revlimid users and that it sometimes resolves on its own. Other times, it takes heavy duty steroids to knock it down. Knowing how my luck usually works, I anticipated several more nights of sleeplessness with the strong possibility of having to suspend participation in the trial for a while.

I dreaded Sunday night. Liz and Robbie went to bed; I sat in my chair watching TV and waiting for the Benadryl to kick in. After a while, I got sleepy and the itching seemed to recede, so I went to bed in the guest room, where I slept like a rock until morning. I woke up this morning to find my legs were clear. The rash was pretty much gone. Halle-frickin'-lujah.

As I sit and type this, I still have a few small patches on my legs and arms, but nothing like Sunday. Don't know if this is a reprieve or if I've 'beaten' the rash. Tonight was my last Revlimid for this cycle, so I'll get a week to clear my system. Let you know how things work out.

One last: I'm proud to announce I'm a new great uncle. My niece Heather, supported by her husband Paul, gave birth on Saturday to an 8 lb 9 oz baby boy. Ladies and gentlemen, I'm pleased to present Graham Bishop Dalton. Welcome aboard, Graham.

We're Slowly Coming Out of the Snow

2010-02-20T23:47:00.002-05:00

Hi all,

Going in this week for another marrow biopsy and another CT scan. Oh boy.

Family news: My niece, Heather, gave birth to an 8 lb 9 oz baby boy today. Congratulations to her and to her husband Paul--life as you knew it is now over. Welcome to your new life.

I have had a side effect from the new medication--I've got an annoying rash here and there that itches like a fiend. Took some Benadryl and will be going to bed soon.

I did get the Mini Cooper back up the driveway today, so I've saved myself that walk now.

Going to bed.

Take care.

Snow Sucks

2010-02-13T22:24:00.001-05:00

We are in Week 3 of Winter's Icy Grip. With Liz's help, I finally got the Mini Cooper down the driveway and out into circulation. It took me two hours to get it two-thirds the way down our 300' drive. I had to stop six times to dig out when it got stuck. Liz got back from grocery and helped me the rest of the way. With her driving and me pushing, we got the car down the finally 100'. At the bottom, in the space where the van was parked (see photo in previous post), I rediscovered that: 1) Wet ice is very slippery, 2) Gravity still works, and 3) There is no graceful way to take that fall. All the way down, I was thinking of ways to minimize the damage. Must have worked, because I got away with a bruised elbow and a slightly sprained wrist. The Mini is now free and after ice and Ibuprofin, I'm relatively pain free.

Nothing new medically. I'm not convinced that the new drug is doing anything, but that was one of the outcomes that was on the table when I agreed to participate in this trial. Even if this doesn't work, at least I've contributed to the body of knowlege. Hopefully, someone else is in a trial at another hospital that will help with my condition. I get more insight on the 25th when I go back for another marrow biopsy and another CT scan.

Hope your Valentine's Day is at least non-snowy.

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2010-02-06T15:29:00.002-05:00

Same car, 27 hours later. Small cold boy added for scale.

Oh the Weather Outside is Frightful (Again)

2010-02-05T20:39:00.000-05:00

Hi all,

Had two G-town visits this week. Total time spent interacting with medical professionals: 33 min. (max). Total time spent driving to enjoy those 33 minutes: 4 hours. Total leave taken to spend with the G-town folk: 14 hours.

Had to go Tuesday for blood work to begin my third Revlimid cycle, and it has to be done the same day I start the cycle. No time to have the local labs turn it around. Thursday was my well-baby visit. Dr. Cheson was on call in the main hospital, so I met with Katherine (now visibly and glowingly pregnant) and with Jenny. All is well medically, though I am scheduled for another bone marrow biopsy on February 25th. I did some shopping on the way home ahead of our blizzard.

It's currently 8:45 p.m. Snow started falling around 11:00 a.m., and there's an accumulation of about 3 inches now. The heavy stuff and the wind is supposed to hit tonight. I'll post before and after pictures of the van after the storm, which is parked at the bottom of the driveway facing the road (Robbie's suggestion). I've been keeping up with friends on Facebook--we're all pretty hunkered in now. I've got plenty of the essentials: bread, milk, toilet paper, Kaluha, vodka, hot chocolate, and firewood.

I'll post the pics on Sunday when the snow should be gone. Wish us luck!

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2010-02-05T12:39:00.000-05:00

Car parked at the bottom of the driveway--Robbie's idea.

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2010-02-05T12:26:00.000-05:00

Here's the official "before" picture of the table on our back deck. I'll take the after when the snow stops.

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2010-02-03T14:18:00.000-05:00

A picture from an upstairs window--more snow last night.

Finally Made it Out

2010-01-31T13:25:00.002-05:00

Robbie and I finally made it out of the house this afternoon. Our neighbor, Tom, arranged for the road to be plowed, leaving me only the challenge of getting down the driveway. The Mini was out of the question. I took the van. I figured out the hard way (again) that I couldn't turn around at our usual spot, so I ended up backing it all the way down the driveway. I was able to turn around in my neighbor's freshly plowed driveway. Robbie refused to be anywhere near the van while this was going on--smart lad. I finally parked in our cul de sac and hiked the 1/8 mile back to the house.

Got Robbie dressed and hiked back to the car. The picture above was taken on the walk out. We had lunch at a Mexican restaurant and stopped by the grocery store for essentials. We're at home now, where Robbie is bored out of his skull. Never thought I'd say it, but thank God for Spongebob. And thank God tomorrow is a school day, though the hike to the car should be interesting tomorrow morning.

I have an appointment at G-town sometime this week, although I don't know when just yet. Why would I want to know on Sunday when my appointment will be scheduled? That would take all the fun out of things. I'll update you when I finally get back from the appointment, whenever that might be.

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2010-01-30T11:48:00.000-05:00

Six to seven inches at 11:30 and still snowing hard.

Dinner Update

2010-01-28T19:22:00.003-05:00

My homage to Twitter: Made teriyake tofu asparagus and broccoli stir-fry with red and yellow peppers for dinner. Robbie had macaroni and cheese (and one bite of broccoli).

UPDATE: My brave little guy just ate three cubes of tofu. Thought it was pretty good.

OBTW: Just because I posted this doesn't mean you can't still comment on the Disney post. It was pretty long and had lots of nice pictures, and as far as I can tell, no one has read it (not that I'm needy).

Off to a Good Start in 2010

2010-01-24T20:34:00.012-05:00

Seems impossible that two weeks ago today we were in Disneyland, Liz had run the coldest Disney Marathon (the full marathon) in history in a shade over 5 hours (30 mins over her best marathon time), and Robbie and I had met Mickey and Minnie Mouse. Here photographic proof of at least part of that:

Disney was really cool--though we did visit the Magic Kingdom far more often than all the other parks combined. My favorite two rides were at Disney Hollywood--Tower of Terror and Rock and Roll Rollercoaster. Working around engineers most of my professional life did take away some of the thrill. While everyone else was screaming and thinking "Are we going to die?", I was thinking "Wonder how many redundant systems Disney built into this? I wonder how much margin went into the design?" I also figured out that those of us who were in the "flying off of aircraft carriers" business have to have an unblinking trust in technology to start with. On roller coasters, there's no fear that the car is going to jump the track or that our head is going to hit that sign, freeing us up to just enjoy the ride. That said, the R&R Rollercoaster is the closest thing I've felt to tactical aviation since March 1986 in the Philippines (my last Tomcat ride).

The smartest decision we made was NOT going to the Animal Kingdom the day before the marathon, though we reached that decision after we had ridden the bus to the park and were walking toward the gate. It was 36 degrees and spitting rain, and Liz and I both realized at the same moment we would be out in this crap all day. Our package was such that we could only visit one park each day, so once we passed through the gate, we were stuck with frozen gazelles and shivering hyenas all day. Liz did get what I thought was a pretty good pic of Robbie and me on the bus ride back, though.

Let me show you another way we knew we were at a Disney resort and not a Holiday Inn. When you walk behind a Holiday Inn, you see a loading dock and dumpster. When you walk behind a Disney resort (specifically the Grand Floridian (and please, do Google it)), you see this:

Technically, this is in front of the Grand Floridian, but I actually had seen the Cinderella coach behind the hotel being polished earlier in the morning. Funniness: You can see the liveried coachman driving the team of six white ponies here. What you can't see are the other men in livery accompanying the coach. I wondered about their jobs, until one or two of ponies unleashed a hail of what we euphemistically used to call "road apples" on the pavement in front of the hotel. Without missing a beat, one of the coachmen grabbed an ever-so-fancy dustpan and broom from the back of the coach and began sweeping up the aforementioned pony fruit. I can just hear the conversation: "So you work for Disney, huh? What do you do?" "Well...".

Liz heads for Seattle for two weeks starting tomorrow morning, so Robbie and I will get more quality time together. I'm in training all week this week, learning how to be a Supervisor (where was this class back in 1984 when I was first a branch officer?). Next week I have an appointment at Georgetown on either Tuesday or Wednesday. I'll be lining up the emergency backup pickup team early this time.

Medically, things progress. I have two more Revlimid tablets to take in the second cycle of my latest treatment. So far everything is fine, but the same could be said after my first two cycles of chemo last Spring. I'll wait until after the third (and fourth (and fifth)) before I get too cocky. As to how it's treating the CLL, no real clue. I still have enlarged lymph nodes, which may or may not be shrinking. It's hard to tell when you feel them everyday. Also, I may be fighting the first symptoms of a cold, which will make your lymph nodes swell. I just take the pills and wait for the next marrow biopsy.

One last to leave you with: if you need a good laugh and want to hear a cool song, click on this link (http://www.youtube.com/watch?v=2lLRBiEBRAc) or go to YouTube and search on "Code Monkey Dance". [Warning: contains one bad word and one rude hand gesture; some familiarity with computer programmers will be useful] It features a young lady named Emily doing an interpretive dance to a great song called "Code Monkey" (go figure) by a guy named Jonathon Coulton. A lady in my office turned me on to JoCo (as we insiders call him), and I found the video courtesy of my friend Stephanie. If you like the video, buy the album on ITunes, and watch Emily's other video, the "Don't Make Me Dance" dance. Hope you enjoy

More this evening, I promise

2010-01-19T07:53:00.000-05:00

Sorry I've been away from the keyboard. Here's a small but dangerous pirate for you until I get to expand the entry:

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2010-01-11T19:01:00.000-05:00

Our hote.

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2010-01-08T08:05:00.000-05:00

View from our balcony

We're on the bus!

2010-01-07T17:43:00.001-05:00

And headed for the hotel. The trip has been great so far. I'll give more detail when I'm not on a Blackberry.

Well Baby Visit

2010-01-06T07:37:00.000-05:00

Went to G-town yesterday--all is well. Looks like I'm responding to the new treatment and have started the next cycle. Actually got into the back room at 10:45 for a 10:30 appointment. That shatters the old record by a wide margin. Left lung still now fully up to speed, but no x-rays needed. Left G-town by noon and got to spend the afternoon catching up with my friend Elena and her daughter (also my friend) Tayrn.

We leave for Disneyworld tomorrow. While I'm there, I'll try to take a few minutes to tell you about Robbie's best Christmas ever.

May Auld Acquaintance Be Forgot...

2009-12-31T22:46:00.006-05:00

Happy New Year! Happy new year indeed. Let me start by saying I'm in pretty good spirits all things considered, sipping a very nice Schramsberg champagne on this New Year's Eve, reflecting back on what by any standard would have to be called an eventful year.

OK, let me say it: THIS. YEAR. SUCKED. In the great scheme of things, 2009 has joined the pantheon of 1985 and 1988 as 'The Years that Sucked Most in My Life'. (If you want to hear the 1985 and 1988 stories, it will cost you beer or really good single malt Scotch.) To review:

February 2009: Diagnosed with cancer
June 2009: Almost--in fact, should have--died from viral pneumonia
July-September 2009: Recovering from June 2009 adventure
December 2009: My dog died

That was a year of sustained suckatood. So how is it I can sit here on the cusp of 2010 feeling generally okay about things? Part of the reason (and here's where I start kissing up) is you. It's you and all the other people who have supported me, who have prayed for me, and who care about me. This could have been a very lonely time, a very lonely battle. I hope you never have this sort of opportunity to know how important it is to know how many people care about you, and how many people there are that care. Make sure you tell the people in your life who don't have CLL how much they mean to you.

2009 had it share of blessings. I got a new job and the opportunity to lead an superb group of professionals. Until the hospital interlude, I was really starting to advance in my yoga practice. I met some incredible people on both sides of the medical fence--patients and medical professionals. I got to see Christmas through the eyes of a child again. Sometime soon (while it's still somewhat topical) I'll share the story of Robbie's Christmas, and how he now is more convinced than ever that Santa Claus is real thanks to things I did.

I have great hope for 2010. I'm already seeing improvement from the new treatment I'm undergoing. We're heading for Disneyworld next week, where Liz will be running her Marathon-O-The-Week. Robbie is very excited.

Resolutions:

I will--however slowly--get back into my yoga practice.
I will get back into the habit of walking at least every other day.
I will reconnect with friends from whom I have drifted.
I will be more patient with my son, the most precious thing in my life.
I will work with Liz to remember that before Robbie, there was us.

That ought to keep me busy.

Anyway, it's almost 11:00 and I'm almost done with the champagne. As an aside, growing up in the Central Time zone made New Year's strange--the Times Square ball always dropped at 11:00 p.m. It was pretty anti-climatic.

Thank you for reading this blog. Thank you, Louise, for suggesting it. Let's hope 2010 is filled with wonder and joy.

At the end of yoga practice, it is traditional to say "Namaste" (nah-mah-stay), which means "The light in me salutes and honors the light in you." To each of you, Namaste.

Happy New Year.

Multimedia message

2009-12-26T21:44:00.000-05:00

Sunshine's paw print captured in a plaster-of-paris ornament, sent by the veterinarin's office.

Rest in Peace

2009-12-21T16:53:00.008-05:00

Sunshine McMichael

February 2, 1997 to December 21, 2009

At 4:45 p.m. today, Sunshine, our bulldog, our "first child", and our companion of the last 12 years and 9 months, passed away quietly in Liz's arms at the Three Notch Veterinary hospital in California, Maryland. She had been having minor health issues for some time--mainly skin and eye problems--but there were no real indications of anything seriously wrong. Today when we returned from shopping, she was lying on her bed showing real signs of labored breathing. Liz knew immediately that something wasn't right and called the vet. I stayed behind at the house with Robbie. Liz texted me at 4:20 to say "It's time". Sunshine's heart, which had beat so strongly and so bravely well past the normally alloted time for bulldogs, was finally giving out. It hurts so badly.

I've told Robbie. He is feeling the feelings only a child losing his first dog can feel. Sunshine has always been part of his life. Through his tears, he summed it up for us all I think: "She was the most beautiful dog in the world. She's always in my heart."

You were a good girl, Sunshine.

Let it snow, let it snow, ...

2009-12-19T09:42:00.010-05:00

We had a visit from mother nature last night--woke up to about a foot of snow (the large flesh colored cloud over the Mini would be my finger--that's how professional photographers do it). Liz had the pleasure of driving home from the airport in that snow. She got in around 3:30 a.m. Two of her colleagues, who were on the same flight but took a different route home, got in around 8:00 this morning. The good news is that the heavy stuff won't be here until this afternoon sometime.

Had my weekly visit to Dr. Cheson on Wednesday which was boring then exciting in turns. Got to the hospital just in time for my 10:00 appointment, then sat until 1:00 p.m. when I was finally called into the back. Dr. Cheson finally joined me around 1:30. I'm looking at my watch, getting nervous because I've got to leave by 3:00 to pick Robbie up at daycare. All was going well until Dr. Cheson listened to my lungs. I noticed he came back several times to the left side. Finally, at around 2:00 p.m., he told Jenny, the trials coordinator, "He's going to need a chest X-ray." I thought, "Oh, Crap". That "Oh, Crap" had several layers, as in "Oh Crap! I hope I get back to get Robbie on time." and "Oh Crap, Liz is in Seattle and I neglected to put a back-up in place to pick up Robbie [note to self: never assume any visit will be a 'routine' visit], and lastly, but by no means leastly, "Oh Crap, I hope I don't get admitted to the hospital!" That in itself was another nested series of "Oh Craps!" that I won't go through. Did I mention it was Robbie's birthday?

Anyway, on the way down to Radiology (sadly, I knew just where it was), I texted several people, including Liz. Liz, in turn, marshaled several back-up pick-up bodies. I got out of Radiology and waited for the good folks to read the xray. The report came back negative for pneumonia--which was Dr. Cheson's concern--in plenty of time to get Robbie. Well, not plenty: I left the hospital at 3:10, and picked him up 10 minutes before the school closed.

So all is well now. We're waiting for the promised blizzard to arrive and we have to get Liz's rental car back before the real weather hits. Wish us luck!

Addendum: You didn't wish hard enough. Though we managed to get the rental car back OK (passing several people in ditches along the way) we had our own comeuppance within 500 feet of our house. We have a 300' gravel driveway that runs slightly uphill through a growth of young pines. Our first attempt at driving up the driveway sputtered and spun to a halt on the ice below the snow. Liz decided to backup down to pavement to get more of a running start, and promptly put the right front wheel of the van in the ditch. It only took a few tries to demonstrate that the van was well and truly stuck. I went up to the house to get my 10-year-old Ram 1500 to pull her out. I backed the BFRT (Big Frickin' Red Truck) down the driveway and turned onto the lane. Unfortunately, I didn't turn soon enough, promptly putting both driver's side wheels in the ditch on the other side. Thank God for good neighbors. James to our south and Tom to our north both came out. James brought his Jeep and his wide nylon strap, and with Tom's help and advice we managed to free both vehicles. (Unmanly confession: Tom had to remind me how to get my truck into 4-wheel-drive low. Made a big difference) I was going to blame our lack of recent winter driving experience, but then I remembered that I asked you to wish us luck. Obviously, you didn't do YOUR job properly. Try harder next time.

While Tom, James, and I were getting the truck unstuck, Liz dug out a parking place for James' wife on a small side road. James stopped by a while ago to bring back our shovels. He also dropped off a chilled bottle of his homemade Gewurztraminer, a German white wine. I fear it won't be here for long. Did I mention I have great neighbors?

2009-12-16T11:06:00.001-05:00

Sitting in the waiting room at Georgetown. Out in the lobby there's a Christmas party for the kids on the cancer ward. You tell me the last time you saw something this poignent. They just finish Rudolph and they're waiting now for Santa.

Can you believe he'll be six tomorrow?

2009-12-15T18:43:00.000-05:00

Tomorrow is Robbie's sixth birthday--seems impossible. Here's a picture of us at his birthday party, held last Saturday at the Family Adventure Center in Leonardtown. It's one of those "big inflatable slide"/electric go-cart/video game parlors. We had his birthday party there last year so we knew it was a winner. Here's a picture of Robbie and me in one of the two-person electric go carts. I have no idea what he's doing

Tomorrow I head back to Georgetown for my one-week checkup. I feel fine--maybe a little shortness of breath that could indicate a lower red blood cell count, which would be expected. Liz is out of town until Saturday, so don't know how much posting I'll be doing.

Phase II

2009-12-09T21:32:00.002-05:00

Robbie is upstairs screaming about some indignity being inflicted upon him--I think he has to get a bath before he's allowed to see anymore of the movie he was watching. Or it may be that he watched the movie too long and now it is too late for a bath. Either way, it's the greatest injustice since apartheid. He is also aghast to learn that even if you scream "Please Mommy! Please!" over and over again, there are some things you still just can't get.

Anyway, sitting in front of me here on the bar cap in our kitchen is a perscription bottle containing 21 capsules (5 mg each) of Revlimid. This the drug at the core of the clinical trial in which I'm participating. This is the drug we hope will drive my CLL into remission.

There are six caution labels on the bottle:
   Do not chew or crush, swallow whole
   Medication should be taken with plenty of water
   May cause drowsiness or dizziness
   Do not take with asprin without knowlege and consent of your physician

and my two favorites:
   Caution: New Drug - Limited by Federal (or United States) law
         to investigational use
   Chemotherapy Drug--Toxic--Dispose of as Biohazard

So here we go.

I'm opening the bottle (Hold tab down, turn) and taking out my first capsule The capsule is white, about the size of a Contact or Motrin capsule, with "REV" written on one half and "5 mg" written on the other (they've used quite a fancy font).

I've picked up the capsule and am holding it in my left hand. I would type "It's in my mouth" while it's in my mouth, but I'm remembering that "Do Not Chew..." warning. May not be good to have it melt in my mouth. Here we go. (a drum roll would be appropriate here)

Just took it. I'm officially into the second phase. Fingers crossed for no nuetropenia, no deep thrombosis, no tumor lysis, or any of the other things that it is very likely I won't encounter, but could. More so, let's hope this is the next step to remission.

Can't tell if I'm sleepy or dizzy, but I'm going upstairs regardless. Good night.

Stand By for Phase II

2009-12-09T14:41:00.004-05:00

Braved the elements this morning to meet with Dr.Cheson. Routine meeting (he had on a really great patterned purple time) and I'm ready to start taking the Revlamid. I'll be taking my first dose tonight, and will do so "live" during a blog entry.

For those of you who may wonder what Dr. Cheson looks like, he looks like this:

More tonight when I take my first Revlamid capsule. Supposedly it will make me sleepy, so if I trail off while typing, you'll know why.

Finally something to post and the time to post it...

2009-12-05T15:34:00.020-05:00

Holiday Greetings to you all. With Liz in Seattle (where she ran the Seattle Marathon in 4 hours 35 minutes) from last Friday until this past Thursday, I haven't had a lot of "posting" time, so my apologies to the faithful who may have started wondering if I had fallen off the planet. I'm still here and finally have more stuff to write about.

And by more stuff, I of course mean another bone marrow biopsy and another CT scan. These were both done Thursday as part of a "baselining" effort for the next phase of the clinical trial. These tests are the "before" picture for the next phase. You have to know where you started before you can tell how far you've come. I dropped Robbie off at school at 7:15 a.m. (he was an absolute hero getting up as early as was needed to get in by then) and headed to Georgetown, where I had a 9:30 appointment to get blood drawn for labs. For those of you who have gotten blood drawn, you know the drill: they stick you with the needle, then fill one or two of those little test tubes with blood. For my labs Thursday the routine was similar, except we fill 15 little test tubes of blood.

Then it was off to my appointment with the lovely and talented Katherine (both adjectives absolutely accurate) for my bone marrow biopsy. And although it may lose me some sympathy points, let me say now (as I told Katherine I would) bone marrow biopsies do not hurt. The only "pain" I have ever experienced is from the Lidocaine shots to numb the beef and bone involved, and that pain is akin to a bee sting. Given the pain those shots are blocking, give me the bee. Katherine (henceforth "K") numbed me up, then proceeded with the procedure. Next time you are lying on your stomach, reach back to your lower back, and on either side of your coccyx (for the Carolina folks, that's your tailbone) you will feel the two points where the hip bones lie closest to the skin. This is the sample site. [An aside: "Coccyx" is a great word for either Hangman or Scrabble.] Having already marked her target on my right hip, K. drove the needle into my hip bone (I had to ask if the needle was in yet). The only real discomfort happens here, when they aspirate (or suck out) a marrow sample. Basically, your hip bone kind of collapses in like a juice box being sucked, which gives a weird sensation that I would call at worst uncomfortable. You're just not set up to deal with that particular feeling. It feels kinda like someone grabs your glute and squeezes really hard. Discomfort, but none of the "bite" I need to categorize a feeling as pain.

After the marrow aspiration, K. went in again to get a small piece of bone. Of course, my hip was being recalcitrant--it refused to give up a big enough sample. K. had to go in twice more before we got a suitably large chunk-o-bone. Again, at no point did this hurt. After we finally got the needed 2 cm. long bone core, I was bandaged, turned over, and laid on an ice pack for the next half hour or so. Katherine and I chatted about flying, about growing up in Maine, and about our favorite parts of Northern California (she has in-laws in the Berkeley hills with a view of the Golden Gate from their house). I was deemed fit for duty, then sent for my CT scan.

The CT scan was very routine once I got on the machine. Of course, before that happened I got to drink another quart of Berry Smoothie Readi-Cat 2 Barium Sulfate Suspension. Yum. Think of drinking cold, blueberry flavored wallpaper paste. A quart of cold, blueberry flavored wallpaper paste. I was in the waiting room (this was the second of three waiting rooms I would occupy while waiting for my CT scan) with a really nice guy named Gregory. Gregory had never had a CT scan and had never experienced the joy of the Berry Smoothie. I gave him the same advise I would give you--chug. Fill up the cup, take a deep breath, turn off your brain, and just drain that cup in one long chug. If you sip Berry Smoothie, you will never, NEVER finish Barry Smoothie.

Gregory didn't listen. He took a big gulp of the first of the two 450 ml bottles, made a face, then started sipping. He finally finished his first bottle (I had long since finished both) and was working on his second when they came to get us for the scan. The radiologist told him he had to finish; he countered that he would in fact regurgitate if he tried. Don't sip the Berry Smoothie.

About Gregory: Gregory has colon cancer. He also has a 23-year-old daughter who he has raised alone since she was 3. He's afraid to tell her what the doctor told him--that colon cancer can be hereditary. I told him that he owed it to her, and we brainstormed on some ways he could get the news to her without the face-to-face confrontation he dreaded. I think we came up with a couple of good ideas.

One last on this--Gregory found out about his condition after a long-delayed colonoscopy. His cancer could have been caught much earlier. For those of you who, like me, belong to the 50+ club, get a colonoscopy. I've had one. The worst part is the fasting beforehand and the--oh, how to say this--colon cleansing you have to do the day before. The procedure itself is a non-event. You owe it to yourself and to your loved ones to have it done. Quit farting around (pun slightly intended) and get the thing scheduled.

Now that I'm baselined, I'm waiting for my Revlamid, the drug I'll be taking for the next six months. According to Jenny--my trials coordinator--only one patient so far has shown any kind of ill-effect from the treatment. One lady in her late seventies developed nuetropenia for a period, but it was controlled.

So here we go. Liz is on her way to Georgia (where she is running a 40-mile trail run tomorrow) and returns on Monday. I've pretty well recovered from the biopsy with just some residual soreness at the insertion site. Robbie and I are going tonight to see our friends, Kathleen and Calvin. All in all, life remains pretty good. Hope your holidays are happy and blessing-filled.

Tim

Holiday Wishes

2009-11-23T20:43:00.001-05:00

No long post tonight--just a wish of "Happy Thanksgiving" to you and yours. Among the things for which I am thankful is You, each and everyone of you who follow this blog. Thank you for your thoughts, your prayers, and your support.

Oh, one bit of news and an important milestone: at 48.7 lbs, Robbie now finally outweighs Sunshine.

A Moment of Silence for Goldie

2009-11-18T19:09:00.002-05:00

We had a death in the family. About a month ago, Liz won a goldfish a the Calvert County Fair, which she gave to Robbie and which he put in our fish tank with our somewhat-startled population of swordtails. Robbie named the fish "Goldie". Well, yesterday, after fighting what looked like ick (like I know fish diseases), Goldie succumbed to his/her illness, surrounded by family and friends. Robbie tried to be blase' about it at first. He had seen dead fish before. This was different; this one had a name. For about 10 minutes, he was kinda upset and teary, then moved on. We have decided that Goldie rates better than a trip in the old ceramic subway, so we've frozen Goldie and will be having a suitable burial this weekend (weather permitting).

Liz is in Seattle and has been having a hellava trip so far. On her way to airport Sunday morning she took out a deer with her rental car. This morning on her way to the Seattle airport, she was the first witness at a fatality accident. The Washington State Police have asked her to make a taped statement. Nice bookends for the trip. She did get home OK.

Finally, a paragraph with no death! Just a knitting needle in my hip. I'm scheduled to go to Georgetown on December 3rd for my baselining for the next phase of my clinical trial. The highlights of the baseline are of course the bone marrow biopsy and the ceremonial drinking of the horrible quart of library paste before the CT scan. I'll start taking the Revlamid the next week. It's been nice to be between treatments, but I am ready to start the next phase.

All for now.

Yo Ho Ho and a Tall Decaff Skinny Mocha Latte with Powdered Cinnamon

2009-11-05T18:05:00.009-05:00

Happy Belated Halloween! To the left, you'll see a fuzzy picture of Robbie and me dressed as fierce pirates. Actually, HE's dressed as a fierce pirate. I'm dressed more like a flamboyant pirate who loves show tunes and makes catty remarks about other pirates outfits, if you catch my drift. Liz was also dressed in Pirate Princess garb, but I was told that if I posted those pictures, my next move better be writing my eulogy.

Robbie was great and surprising. He loved his costume and loved tromping thru our friend Art's neighborhood, but after about an hour, he turned to us and said, "I've got enough candy now. Let's go home." After trying in vain to explain that on Halloween there's no such thing as 'enough candy', we gave in and went home. Once there, he dumped his loot out on the coffee table, took inventory, gave Liz and me one Fun Sized Kit Kat each, then ate one (One!) piece of candy himself. Over the next several days, he gave away far more of his candy than he ate. Neat kid.

Yesterday, I went to my first yoga class since June 6th. I've done yoga since, but not in a class setting. As I said on my Facebook page, except for my total lack of flexibility, strength, and stamina, I thought I did great! Actually, it was a challenging hour-and-a-half, but I really like Laurie, the instructor, and I liked the class. I was a sweaty puppy (now Tim, puppies don't sweat!) at the end, but I never had to bail out of any positions. I'll definitely be going back next week.

No word yet when I start my next round of treatment, but it's got to be in the next three or four weeks. I'll keep you informed as I get informed.

Finally, a warm welcome-aboard to "Sadrypali", the newest member of the followers list. I'm not sure what brought you to this blog, but I'm glad you're here.

No News is No News

2009-10-29T21:20:00.000-04:00

Met with Dr. Cheson on Tuesday. No real news to report. I'm still progressing according to schedule and it looks like we switch to the Revlamid (that's the pill that is at the heart of my clinical trial) probably next month.

Robbie and I are bachelors again this week, with Liz in Fort Worth. Tonight we went for Mexican, but last night I was Googling "How to Waterboard a 5-year-old". Now to be fair, he wasn't all bad last night. Here's a picture of one of the times he was not being a total screaming (literally) pain in the butt (who I love with all my being.) As you could see, I was still recovering from our early discussions.

Pumpkin Sunday

2009-10-25T21:57:00.000-04:00

Nothing earth-shaking from last week. Liz went to Seattle again on Wednesday, returning this evening around 6:00. Robbie was really good this week, all things considered. Today he and I went to the annual pumpkin carving party hosted by my friends Dennis and Christine. It was a great time, as it usually is.

I see Dr. Cheson again on Tuesday, then probably have another month "off". After that, it's back to Georgetown for another bone marrow sample and another CT scan. Then on to the next phase of the clinical trial. Apparently I can anticipate neutropenic episodes under the new regime, but I hoping we'll still offset those with the growth factor shots.

And, OBTW, who dat said dey's gonna beat them Saints? 7-0: who'd a thunk it.

Marathons are for wimps...

2009-10-18T20:57:00.000-04:00

Greetings from the Bayou State, where our state motto is "Thank God for Mississippi". By now you've probably heard about the local justice of the peace who refused to marry the mixed-race couple. That happened about 15 miles from here. Not since Britney Spears has Tangipahoa Parish had such a distinguished national celebrity. Makes you proud.

Now, I could have focused this entry on celebrating my 100th blog entry, but I was upstaged.

Liz, now bored with the lack of challenge offered by 26.2 miles, took it up a notch and--BAM--ran a 50-kilometer trail run today. That would be 31.1 miles for the conversion-challenged. That's a long way. Today was as pretty as a Louisiana Fall day can be. Liz said the trail, which followed an old railroad right of way, was the prettiest trail she's ever run. Even the one-mile section of calf-deep mud couldn't put a damper on things.

Beyond that, we're having a great time in Louisiana. Robbie is having a particularly great time playing in his Aunt Nina and Uncle Buster's house. He is exhausting Nina and Buster's dog, Gracie, with marathon sessions of "fetch" in the grand hallway of N&B's house. He has also been playing down at the old barn and today found the courage to climb on his grandfather's tractor (see picture). This is the tractor on which I spent uncountable uncomfortable hours as a teenager (pre-Ipod), so it's kinda sweet seeing Robbie on it, knowing he won't have to spend quality time in the Louisiana sun, breathing the diesel fumes.

I went to church today and met many of the people who prayed (and are praying) for me. It was heartwarming to hear how many people read this blog regularly (Hello!). I also met a young lady who confessed that many years ago, when she was in the third grade, she decided that she was going to marry me. I think she was a student in my mother's elementary school class, so I have to believe that was the link.

We head back to Maryland tomorrow and I'll be taking Tuesday off to catch up on the things at home I missed this weekend.

OBTW, this is my 100th blog entry. I believe this is a tipping situation.

2009-10-15T17:33:00.001-04:00

Most direct route from BWI to New Orleans? According to Southwest Air, it's via Tampa.
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Fun in Baltimore

2009-10-11T15:55:00.000-04:00

In one of these pictures, you'll see what the feet of the mother of a 5-year-old look like post-marathon, after the next-day blister-popping party. Colorful band-aids, no?

In the other, you'll see the male contingent of the Southern Maryland McMichaels aboard the USS Torsk, a retired WWII-era submarine, now part of a four-ship exhibit in Baltimore's Inner Harbor. We had already toured the USS Constellation and finished up the day with lunch at the Hard Rock Cafe.

26.2 Miles of Crazy

2009-10-10T19:59:00.001-04:00

As reported earlier, Liz ran her first marathon today, finishing in 4 hours, 45 minutes. She found the wall at 18 miles, spent a while deciding she couldn't possibly finish, then finished. I am very proud of her.

Robbie and I went to the National Aquarium. Our hotel is faces the Inner Harbor, so it was walking distance for us. He enjoyed it.

We're staying one more night in Baltimore, so if any of my fellow church choir members reads this, please let Herself know I won't be there tomorrow. Thanks.

2009-10-10T13:25:00.001-04:00

Liz finished her first marathon!

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2009-10-10T07:26:00.001-04:00

Liz just left the hotel to run her first marathon.

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How to Post a Comment Painlessly

2009-10-06T21:07:00.000-04:00

If you would like to post a comment (and I love every comment) but don't want to go through the pain of registering with Google, there is an easy way to do it (as provided by my dear friend Peg (aka Puddles)).

1. At the bottom of the post you're reading, you'll see some gold letters saying 'X Comments'. X often equals zero (he whined). Click on these words--they will link you to a page with just that post, plus the Comments section. Go ahead and do it now--you'll still be able to read this on that page.

2. Once you get to the page, look below the post for the box labeled 'Post a Comment'. It's down below all the comments currently posted. Type your comment in the Comments box. It doesn't have to have anything to do with the post. "Hey Tim, this is Antoinette! I'm following your blog." would be a great post (Of course, posting that quote verbatim would be juvenile). Please include your name if you want me to know who you are (and I'd really like to know).

2. Below the comments box, you'll see a line that says 'Comment as:". Select the arrows on the far right of this column to pull down the pull down menu.

3. Select the last choice on the list: 'Anonymous'

4. Click on the 'Post Comment' button.

That should do it for you.

Now let's see all you lurkers out there post a comment. Surprise me with who's reading this stuff.

Your pal, Tim

The Comments line should be just about directly under the word 'just' in this sentence.

A Favor to Ask...

2009-10-06T17:14:00.000-04:00

A favor to ask from those of you who post comments anonymously occasionally: could you write up a brief description of just how you do that? I've had several people tell me that they wanted to leave comments, but couldn't break the code. Rather than give them my account password, I thought I would make this appeal. Once I get a consensus, I'll post the process for the technically-challenged to use.

On a personal front, it been a continuing week of post-June "firsts" since my energy has returned: first time pushing Robbie on the swings at his school, first walk around my 2.5 mile evening stroll route (under a beautiful full moon on a 55 degree night), first time mowing the lawn myself. These are good firsts.