Thursday, December 31, 2009

May Auld Acquaintance Be Forgot...

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.


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.

Saturday, December 26, 2009

Multimedia message

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

Monday, December 21, 2009

Rest in Peace

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.

Saturday, December 19, 2009

Let it snow, let it snow, ...

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?

Wednesday, December 16, 2009

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.

Tuesday, December 15, 2009

Can you believe he'll be six tomorrow?

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.

Wednesday, December 9, 2009

Phase II

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

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.

Saturday, December 5, 2009

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

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.