Friday, December 30, 2011

The Evening Walk, as improved and documented by technology

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)

Tuesday, December 20, 2011

Happy Holidays/Georgetown in December

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 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.

Wednesday, July 27, 2011

Round 3, Cycle 6, Day 2

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.

Tuesday, July 26, 2011

End of the Trial, Take 3

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.

Tuesday, July 5, 2011

Sven and Ole Go to the Beach

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."

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.

Wednesday, June 29, 2011

Hey Everybody! Remember Me?

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.

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.

Sunday, March 27, 2011

Yesterday's Adventure in Medicine

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.

Friday, March 11, 2011

Memory Lane

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

Session One, Day One

Unsurprisingly similar.

Tuesday, March 8, 2011

Chemotherapy, Take 3

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.
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.
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.
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.
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.
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.
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.
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.
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. 
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.)

Tuesday, February 22, 2011

May I have another bone marrow biopsy, please?

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.

Wednesday, February 2, 2011

Groundhog's Day (or Here We Go Again)

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.

Monday, January 17, 2011

New blogging tools

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.

Saturday, January 1, 2011

Open for Business Again

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.