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.

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

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

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.

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?

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?

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

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.

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.

Tim

Holiday Wishes

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

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

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

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

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...

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.

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

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

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.

Liz finished her first marathon!

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Liz just left the hotel to run her first marathon.

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How to Post a Comment Painlessly

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...

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.

Crazy Woman Alert

Just to let you know, Liz--in prep for the marathon she's running next weekend--just finished a 20.1 mile run. I, on the other hand, just finished a bloody mary. Who has their priorities straight in this family? That's what I thought.

Four Months Later, I'm Back on the Mat

I finally unrolled my yoga mat yesterday after a four-month sabbatical. Decided that with the onset of Autumn, on the first day of October, it was a good occasion to start to get back to where I was before my summer vacation in June.

I locked my office door, rolled out my extra-long green yoga mat, put my Ipod in its player (I have several yoga lessons on the Ipod), donned my yoga duds, and got ready to down dog. I purposely chose what I consider the easiest of the lessons, one designed to be done when you first wake up in the morning. Let me say up front that the yoga felt great. It felt good physically, it felt good mentally, and it felt good spiritually. It was also a hell of a wake-up. What used to be the lesson I did when I didn't feel like expending too much energy kicked my ass.

I have a secret vanity that I'll now share. When my weight is down and I'm in shape, I have great legs. Great legs with big, impressive thighs. I really do. I've had non-gay guys comment on my legs. Last June, after two years of walking 3 to 5 miles a day and practicing yoga for a year, I had really great legs. There's a very fundamental yoga pose named "Downward Facing Dog" that gives you a good chance to check out your legs. Back before I was hospitalized, I always took great pride in Down Dog as I saw the bulk and definition of the muscles in my thighs and calves.

Yesterday, looking backward during my first Down Dog, I was shocked. Those were NOT my legs. My legs are sleek and powerful. Those legs looked like skinny old-man legs wrapped in loose-fitting burlap. Yikes. And I have a sneaking suspicion that those aren't the only muscles that need a little attention and tough love.

So: back on the road, back on the mat, time to start setting the house in order again. And having done it once I know I can do it again.

Sound the "All Clear"

Just got a phone message from Jenny, my nurse, saying that the neutropenia crisis of September 09 is over. My neutrophil count is up to 2000, which would be low for any of you, but is just fine for me. It is much better than the count of 100 I had last Monday.

So I'm cleared to lick doorknobs again. You don't know how much you enjoy some things 'til you can't do them.

Liz made it home safe from Seattle (where she did another half-marathon over the weekend (had a couple of hours to kill so why not?)), Robbie was thrilled to see her home, and my big staffing event went very well yesterday, so all is right with the world.

(Anybody want to buy a box of 47 face masks? Anybody?)

Still Going...

Monday night, almost 8:00 p.m., and still haven't seen a temp above 99.0. I do have a little headache and could be getting something sinus-related. I'll keep taking my antibiotics and anti-viral medicine and hope for the best.

Shout out to Kim B., who dropped off a big batch of delicious butterscotch cookies yesterday for Robbie and me. Now a moment of silence for the late batch of cookies. The timing was great, as I am trying to put on weight anticipating a "weight losing" episode. If I recover the WBCs without getting sick, I'll drop some of this weight I'm adding. I kinda like being under 190#'s.

Big day tomorrow at work, perhaps the biggest. Hope we're ready. Hope your day is a good one.

Be Vewy, Vewy Quiet...

Saturday night, 6:00 p.m., temperature 98.2. So far, the various bugs floating out there haven't found me. Thanks to Mike, Kathleen, and Michael for making a grocery run for me--this after they spent the afternoon helping friends move. Saints, I tell you--saints.

Robbie was very good today, considering I spent most of the day cleaning the house downstairs (got to do something to kill the time). I'll find out next Wednesday or so how the white count is coming. As I think I may have mentioned, I expect the count to drop further before it starts up again. Every day without a fever is a good day. This is a good day. Thanks for the prayers and thoughts.

No, I'm not here to rob you...

If you saw my last post, you know that I now have a barely functioning immune system, having had a white blood cell crash this week. I'm taking precautions to prevent getting sick, including sleeping at least three feet from Robbie (I'm on a single mattress on the floor in the bedroom vice sharing a bed with him while Liz is gone), slathering myself with hand sanitizer on a regular basis, and wearing a face mask when I go public.

Made my first excursion in a face mask today. Truth be known, I felt a little "Michael Jackson-ish", except without the being dead part. I had to go to the grocery this morning and had been cautioned specifically about going to the grocery by Jenny. On the way home yesterday, I stopped by a local CVS and bought a box of face masks. Pulled on out this morning, put in on, and headed into the store.

At first I felt a little silly, assumed I looked a little silly, and thus was somewhat reluctant to wear the thing. Then I remembered how I looked in the pictures Liz posted in June (and some she didn't post--thank you, Liz) and decided this would be better.

No one stared, no one seemed perturbed, no one even asked. I said "hi" to several folks working, got my stuff, and got out. Bathed in hand sanitizer when I got out of the store.

I'm back home now, where I'll be working for the next several days (weeks?). Current body temp is 98.4. Keep your fingers crossed.

Neutropenic Again

Time to spin up the prayer wheels for a pre-emptive strike against any flu or other bug floating around. I just got a call from Jenny, the coordinating nurse for my trial. Despite the growth factor shot, my white blood cell count has crashed again. Now, I'm not sick (temperature was 98.2 about three minutes ago), but I am very prone to getting sick. Basically, I'm where I was in June right before I got sick, but this time I have foreknowlege of my condition and can use that knowlege to modify my behavior.

I plan to work from home until this gets better, and if I have to make a public appearance, it will be with a face mask.

Liz left on a trip to Seattle earlier this morning, but is spring loaded to come back as needed. I'll probably pull Robbie from school until she gets back.

It just keeps getting better and better.

Done with Chemo (for now)

It doesn't seem possible, but I'm done with infusion chemotherapy, at least for a while. I went in yesterday for my growth factor shot and that was that. Now, I still have CLL and it's still detectable, so I'm far from done with treatment--in fact I'll probably start the next phase of my clinical trial in November. But for now, no more IV's, no more liquid Benedryl, and sadly, no more Jamela, Mercedes, Mary Ellen, Sonia, Rasheeda, and Marta. The ladies on the Seventh Floor are truly professionals and good people who never fail to raise spirits. They know who has kids, who has new grandkids, and they always ask. I can truly say I never had a bad "stick" in those rooms. Thank you, nurses and staff of 7 West. We didn't drive the CLL into remission, but we sure beat the heck out of it.

Robbie and I are currently sitting in the Dulles Hyatt, while Liz is 12 miles north at the Algonkian Regional Park, should have just started to run a trail half-marathon. She is insane. We had a delightful dinner with Jim and Elena last night, highlighted by Elena's scratch made Chicken Parmigana. It was the most "real food" I've eaten in ages and it was really good. Rob and I will be getting breakfast soon, then may take a ride over to the park where Liz is running. I'm hoping that this is small enough an event that we may actually be able to see her finish (which should happen around 11:30).

Whew! Took 2 hr 45 min to get to Gtown today. Only needed 1st & 2nd gear for most of the trip.

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Long Monday on the Last Week of Chemo

Well, I had my first of my last four chemo sessions today, though for a while I wasn't sure it was going to happen. It was one of those days. I got to bed plenty early last night, got up at 5:30 a.m., abluted, and hit the road by 6:10. I was about 20 mins from the house when I realized that I had forgotten the activation card for my laptop, with which I had planned blog and work today. It wasn't until I got to the Georgetown parking garage that I realized that I had also forgotten my cell phone, so I couldn't call others to ask them to do the work I was going to do. Not a great start.

Up to the seventh floor and into room 10. IV inserted by Sonia and blood drawn for my labs by 09:00. It normally takes until around 10:30 for lab results to come back and to have my drugs ordered. Today we had a hiccup--my absolute neutrophil count (ANC) had come out back at a number of 974. You have to have an ANC of at least 1000 to start chemo. Rather than send me to the store for more neutrophils, they sent the sample to have a hand count done (now there's a great job--neutrophil counter), which returned a value of 1250. It returned that value at around 1:30 p.m., and it was only then that my Rituxin and Fludarabine were ordered. Bottom line--I finished infusing around 6:00 p.m. and got home just after 8:00.

On the good side, my appetite has started to come back. I had a chicken salad sandwich and tater chips for lunch, with no apparent ill effects. I also gambled and for dinner had a cheesesteak from Wawa (for my southern friends, it's a convenience store chain). I'll let you know how that works out tomorrow.

Going to bed now, as I have to get up in about nine hours. Night, night.

Sorry, sorry...

First, look below and read Liz's post (I'll wait...).

Let me get the whining out of the way (recapping some of what Liz said). I've had a series of little bumps over the last month that took all the spare energy I had, but the trends are all still good. First, coming off a cold a month ago, I had a dry, hacking cough that lingered until last week. Without sharing too much, the cough was characterized by thick throat yuk, which often deposited itself on the "gag point" in my throat, meaning I spent lots of quality time gagging. Enough to say that it's been ages since I blew milk out of my nose (you're welcome). That finally resolved itself after I developed a fever last week of near-scary numbers (high 99's to low 100's) which cleared up in time for a trip to Virginia Beach.

While at VB, Robbie played in the surf and on the beach for the first time ever. It took a little bit, but he loved it. We made tidal pools and played in the waves. Just as I was feeling cocky about feeling good for the first time in a month, I picked up either a touch of food poisoning or a stomach virus that made the last three days interesting. I will spare you the details. I think I'm finally through that, but of course I start my sixth chemo round next week, Command Staffing (a work thing) is coming due, as is NSPS (another work thing), so the rest of the month is going be a joy. The good news is that we are taking a family trip to Louisiana in October.

I met with Dr. Cheson and company yesterday and I'm good to go for next week. This will be the final round of Chemo for this session, which means I'll get to do another Bone Marrow Biopsy at the end of four weeks. Then I'll likely go into the next stage of the clinical trial. I'll keep you updated (I promise).

Lastly, feel free to throw in a comment. It really helps to know people are out there reading these. Thanks.

Guest Post - At Tim's request

Hey all,

Tim asked me to post an update on the blog for him today - mainly because he's tired and the combination of chemo, a cold followed by a stomach virus, and job stress (there is a critical phase of the NAVAIR engineering staffing that is in process right now) has been difficult. So Tim's energy is low, but he's still maintaining his positive outlook.

Some good news: Tim's last chemo cycle is scheduled for next week. The chemo is scheduled once a month for six months and despite his little incident in June, he's still on schedule and still in the clinical trial. The chemo has taken a bit of a toll on him, Tim is looking a bit gaunt and drawn and he's down to around 185 lbs. However, he is heading toward the last stretch so we think that all will be well and a break from the chemo will bring him back to more of his old self.

Note: he did say to me today, "hey, I'm finally down to the weight that all the Navy flight surgeons thought I should be!!! Now I just need to work on the muscle mass and I'll be a babe magnet!!" ( I didn't reply but he does look lean and mean)

We spent Labor Day in Virginia Beach, taking Robbie to the beach for the first time (he loved it). It felt good to get away, even just for a couple of nights. I ran a half marathon on Sunday, then we headed home with a stop at Wilson and Jennifer's for a wonderful visit. Nate and Jessica, Tim's nephew and his wife, were there with their two beautiful kids, Trent and Emmy. Robbie and Trent had a great time visiting together and we definitely need to get the kids together more - the pool at Wilson's house is great!! I got in the pool with the kids to keep an eye on them and I'm convinced that kids somehow don't feel cold water like their elders do. The pool was COLD!!! Robbie and Trent didn't seem to have much problem with it though....

I am trying to cut down my travel schedule but it's tough right now. Right up through November I could be in Waco, Korea, Seattle, San Diego, or Jacksonville every week. Between Tim and I we'll prioritize, the goal is to keep him healthy and fighting through the chemo.

I appreciate everyone looking in, I've include some Robbie pictures. The first is of Robbie and the claw from the 16lb lobster I caught scuba diving when I was 19. The second is of Robbie and Tim in Virginia Beach this weekend. Everyone have a great night.


Liz

When it Rains...

Robbie apparently broke a bone in his foot (a metatarsal) while playing last Thursday at a local amusement spot called the "Jump Place" on a school field trip [see barely visible red circle in adjoining picture]. This place is filled with big inflatable slides and such. While jumping down one of the aforementioned slides, he got his right foot turned under and cracked the bone. We watched it overnight and when it was more swollen and painful the next morning, Liz took him to St. Mary's Hospital (yikes!) where he was x-rayed and diagnosed. St. Mary's put a soft cast on him and gave us a referral. I'm taking him tomorrow to an orthodpod for a more definitive treatment. Poor guy--looks like no swimming or biking for the next couple of weeks anyway.

I'm OK, but I have noticed that the growth factor shots do take the wind out of my sails. I got my most recent shot on Friday, following four days of chemotherapy. Hopefully yesterday was the worst day. I also have a residual, non-productive, hacking cough left over from my "real" chest cold a few weeks ago.

Sunshine (our bulldog) is worrying me, as she not only is drinking (and excreting) lots of water, but since yesterday she hasn't been able to keep down a meal. Joy.

Liz left on travel early this morning and gets home late Thursday night, so this could be a long week. I'll try and keep you posted if energy allows.


UPDATE/UPDATE: Foot's not broken, only strained. Robbie's back in street shoes and can swim, though running around and biking are off the menu for a while. And Sunshine kept down two meals of rice. Things are looking up!

Hauling Hay

It's 11:00 a.m. Tuesday morning, and I'm back in my favorite (and my brother Wilson's favorite) blue reclining chair, waiting for my Fludarabine to come from the pharmacy.

On the parking garage elevator this morning, coming up from the bowels of parking level 9 (where dwarves toil in the corners looking for jewels and precious metals), I met a harried young mother and her precious daughter--maybe four years old. The mom had scored a parking place on level 5, and was trying to manuever her daughter's stroller into the elevator. I held the door ('cause Mom raised me that way) and helped them in. The daughter was lovely, dressed all in pink, with what I think is blond hair. I say "what I think" because her hair wasn't really there. I didn't ask her mom about her condition, but was pretty sure I could guess. My guess was confirmed when they rode the hospital elevator to the fifth floor, home of the general oncology department. That's why I can't complain. Under the "God Forbid" category, ask me if I'd rather have this disease or have Robbie have this disease. I'll pray for that mother and that child tonight.

Yesterday, on the seventh floor, I had a delightful conversation with a man--call him Alan--with lung cancer. It has been my experience that people in here for treatment are either very outgoing or very insular. Alan was tremendously outgoing. The son of Northern Maryland minister, he is 57 years old, has a graduate degree from an unmentioned educational institution, and came out of grad school to work for many years as a carpenter. He has a small but aggressive tumor that seems to be responding well to chemo. It seems the aggressive cells, the fast movers, sacrifice protection for speed--much like the Mitsubishi Zero fighter of WWII. As a result, they are very open to attack.

Alan was raised in dairy country, and says he still marvels thinking back to his days when he helped neighbors bring in the hay. Watching from the back of the hay wagon as the people on the ground ran in the hot sun from bale to bale, throwing the 90 pound bales up to where he waited to stack them on the cart, stopping only when the wagon was full, and stopping only until the tractor reached the barn. Then off the cart and back to throwing bales. Alan said that thinking back on this non-stop machine-like performance still leaves him in awe. I told him that I could relate.

I think sometimes (and have probably related in a previous post) that growing up on a farm in some ways prepared me for the battle in which I am currently engaged. Look--if you are gazing out over three different fields, covered by a couple of thousand bales, knowing the temperature and the humidity are both going to break the 95 mark, it can be downright overwhelming. So you learn not to look at the whole field. You look at the next bale. You pick it, you throw it on the cart, you roll up your sleeves (for the city folk, only a fool hauls hay in anything but long pants and long sleeves) and brush off any fire ants that you picked up, then run to the next available bale. You do this until the wagon is full or there are no more bales. There's a break for lunch. There's a break for dinner. There's a break each time you ride the wagon to or from the barn. Other than that, you work. Sometimes we hauled hay until eleven o'clock at night, gathering "straggler" bales by the headlights of the tractor, with hands so sore you had to lift the bales onto the back of the wagon by your fingertips. But eventually, you finished.

I'm viewing my ongoing chemotherapy this way. I don't worry about the end state. I focus on the next treatment, the next thermometer reading, the next set of pills. I have faith that some day someone will say "You're in remission". Hauling hay got me ready for this. And I always wondered, "What good is this going to do me?" Who knew?

Starting Down the Back Stretch

SO here I am, Monday moring at 10:40, waiting for my Fludarabine. I got a late start this morning, due largely because Robbie was in such a great mood and I hadn't talked to Elena for a while. I was up in plenty of time, just didn't get out the door when I should have. Now I'm paying the price.

Robbie was absolutely great yesterday, though he was really spun up prior to falling asleep. He slept until 7:00 a.m., lay in bed chatting with me until 7:20 or so, then we both headed to the kitchen when we heard Elena rattling around. God bless Elena--she is not a morning person, but she was a trooper today.

Where I normally reach Georgetown by 8:15, I stumbled in around 9:00, and became part of the Monday morning 7th Floor crush that I usually avoid by getting here early. I've given the normal 2 1/2 pints of blood for the bloodwork, and am now waiting for my drugs.

Still not complaining, but this is getting old. On the other hand, in as much I plan on getting old, I guess I should hush up and take my medicine.

If the Benedryl doesn't wipe me out, I'll log on again later.

Rob & I are waiting outside Jim & Elena's. I have a key, but it's on the Mini's keychain, which is in Seattle with Liz..

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Wednesday's Visit

Well, I'm officially certified "ready for more chemo". Went in Wed. for my pre-chemo check. Dr. Cheson was out of town, but I saw my trials coordinator, Jenny, and Dr. C's nurse practitioner, Katherine. I don't know if it was because Dr. C was not there, but I got in almost a half hour before my appointment time (I got there early for parking reasons).

My blood work all looks good, and my creatinine levels are still going down. Kidneys are still getting better. My heart rate is still a little high and more so than ever I think I'm feeling the fatigue that made chemotherapy famous. Still not complaining though--I still have my hair.

Liz will be out of town from tomorrow until next Tuesday, so I will once again be throwing myself (and Robbie) on the tender sympathies of our friends Jim and Elena (and their daughter Taryn). I've got to get Sunshine in the kennel on Sunday. Still not complaining.

Anywho, that's where things stand. Let's all hope they don't get exciting again.

Have a great weekend.

Tim

In rm 315 @ Lombardi, where I first met Dr. C, and I'm in 45 min ahead of my appt. This is unprecedented.

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It's deja vu all over again

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Heading back to Georgetown Wednesday for the pre-chemo checkup, then on to series Five next week. Only remnant left over from last week's fever adventure is a dry, hacking cough that flares up in the evenings. No fever, no throat guck, just a "oh crap, I think I cough unproductively for 15 or 20 minutes" kind of feeling.

Robbie had an scare on Sunday. We've were cleaning out the basement and garage this weekend, with various people inside and outside, upstairs and downstairs. Robbie is big enough that we let him go outside solo (not so scary as we live in the middle of a 2.5 acre pine forest at the end of a cul-de-sac). So Robbie is outside, Liz is upstairs, and I'm in the living room. All the sudden I become aware of a sound that every parent recognizes: the cry of your child in pain. I ran for the door, but Robbie was there before I got outside. He was holding his right hand and crying like crazy. Seems he had been getting something out of the van and had inadvertently closed the sliding door on his fingers. He was stuck, in pain, and scared to death. Through that, he managed to get the van door open then ran to the house. Damage was minimal and addressed with a "Spongebob Squarepants" bandaid. Poor guy had been more scared than hurt, but imagine being five and stuck with no help around. He's fine now.

Nothing really new to report on my front (or on my back for that matter). Just wanted to stay in touch. Thanks for looking in.

Don't ask me about my last two weeks

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Actually, you don't have to ask--I'll tell you. Three weeks ago, Dr. Cheson marked me fit for Chemo, which I started on Monday week before last. At the same time, Liz was in a five-day, all-day class and thus had to work evenings to catch up on her work. So my day--for five days--was 1) Wake up at 5:00 a.m. and drive to Georgetown, 2) Chemo treatment, 3) Drive home, catch a 30-minute nap, 4) Drive to work, 5) Work until around 4:45 p.m., 6) Pick Robbie up at summer camp, 6a) Optional: stop at the grocery store to restock, 7) Feed Robbie and Sunshine, 8) Bathe Robbie, 9) Turn Robbie over to Liz when she comes in and 10) Try to get to bed by 8:30 p.m. so I could get up and do it again the next day. I usually had only a half an hour or so between steps 9 and 10. That schedule worked fine for a couple of days, but by Friday I was fried (get it? Friday? Fried? It's a pun). Anyway, on Friday I didn't get Chemo. Instead I got a growth factor shot to increase my red and white blood cell production. I was wiped out.

I napped most of the weekend trying to recover. Last Tuesday Liz left for Seattle and Rob and I were bachelors again. It's a routine we're used to, but this week we had a wrinkle thrown in. On Monday my blood work showed great (for me) RBC and WBC counts. By Wednesday, I had picked up a low grade fever (~99.5) that seemed to flare in the evenings and go away by morning. I had been told not to really worry until the temp got above 100, and to head for the emergency room if it got up to 100.4.

Friday night, the night Liz was scheduled to return from Seattle, I was feeling a little punk. I took my temperature--100.8. Oh Crap. This was around 7:00 p.m. I took the temp again after 15 minutes. 100.4. I packed bags for Robbie and me. Knowing Liz would be in around midnight, I walked out into the middle of our front yard (the only place at our house with a cell phone signal that night) and started calling the "where can I leave Robbie" phone tree. None of the usual suspects answered the phone. Slight panic, but still had some ideas if push came to shove.

By 9:00, with a temperature fluctuating between 100.2 and 100.7, I called the Oncology Emergency number, where the operator alerted the on-call oncologist. At the same time, Peg (or as her dad calls her, "Farm Girl") texted me to say she was available for Robbie-rescue. The oncologist, Dr. Fitzpatrick, called and we discussed my situation. I told her about the fever history I had this week, she saw that I had good numbers at the start of the week, and decided that I didn't have to come in that night, but that I should get blood tests in the morning.

Unbeknownst to me, Liz was in travel hell on the West Coast, having missed on flight due to a double bridge closure on her route to the airport. They closed the bridges so that the Blue Angels could practice. I've always hated those prima donnas (they caused us problems during Pensacola flight training). The airline rebooked her on a midnight flight, then lost the booking. She was on hold with the Navy travel folks for over two hours. They finally got her on a flight at 1:00 p.m. on Saturday. She got home around 1:00 a.m. Sunday morning.

Back to our heros: Saturday morning Dr. Fitzpatrick called to say "Get ye to an emergency room and get some blood drawn so we can check your levels". While I could have driven 20 minutes up the road to St. Mary's, I was afraid they would try to kill me again. Besides, the goals was to get my blood count numbers to Georgetown, and I knew St. Mary's would screw it up somehow. So I decided that Robbie and I needed a road trip--we were going to Georgetown. He was great. We drove the two hours to Georgetown, singing songs and making each other laugh. He came into the ER with me and watched with fascination (and endless questions) as they took my vitals. We went back to a observation room in the working area of the ER, where we were visited by an admitting nurse, a fourth year med student, a phlebotomist, the 4th year and the head of ER, another nurse, and finally (and to my delight) Dr. Fitzpatrick herself, who delivered the news that my blood numbers were fine and that I had a chest cold. We were sent home with cautions to monitor and report.

One story--as the second nurse came into the room, Robbie (who knows a cute nurse when he sees one) said, "Hi, my name's Robbie! You had a plesiosaurus behind you!" When she asked "What's a plesiosaurus?", he replied "It's a dinosaur with a long neck and four paddles for legs that lives in the ocean!" She was charmed. I think he could have gotten a phone number. I'll work with him.

Today my temp was fine, and I'm sure it's up around 99.3 right now. I'm taking Robitussin to break up the chest congestion. I'll be going to bed after I post this.

All things considered, a busy two weeks.

All is well. Temp is normal, WBC count 16 (which is very high for me). Rob & I took a trip to Gtown ER for bloodwork

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Back @ Gtown hospital--don't worry, just getting bloodwork done. My temp, which has been normal all day today, got up

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Just got cleared by Nephrology, so I'm officially done with all the medical follow up from last month.

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Getting my benedryl and getting hydrocortizone for the first time.

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Done with fludarabine, waiting for lunch & rituxin.

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Back on fludarabine--it's infusing as I type.

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Memories of Last Month

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Hi all! Well, I start chemo again tomorrow, so it's once more into the breach, dear friends. I'm a little wiser than I was before all this excitement. Starting the week after chemo and for the week after that, I'm going to pretend that I don't have a single white blood cell in my body. I will take all the precautions, do all the washing, take my temperature about every two hours, and hope for the best. I will be helped by the fact that they will be giving me what are known as growth factors which will help my body produce more red and white blood cells.

I also thought (hoped) it might be interesting to get my perspective and memories of ICU and hospital life in general. Rather than try to capture it all at once, I thought I would add a memory each day to lure you back here. Let me say that I have almost no memory of my time at St. Mary's hospital. I remember getting there, I remember them declaring me neutropenic (extremely low in white blood cells), and I remember parts of the ambulance ride to Georgetown. I had no idea I had spent the night there and still have no memory of it.

The first week and a half a Georgetown is gone. They doped me up pretty extensively, plus it appears that the blood flow to my brain was inadvertently reduced when they put the lines in place for my first session of dialysis. Once that was fixed, my recovery was almost exponential. It was during that recovery that I began to regain, if not conciousness, then at least lucidity. Now remember, I'm saying lucidity, but I was still fabulously loopy.

My first memory is "waking up" lying on my side, looking at an odd machine, and listening as a lady in the room was getting all excited because of the LED on the machine that read "400". I didn't know why this was exciting, nor did I care. I just wanted to get up. As I started to put my plan into action, I suddenly heard my brother Wilson's voice behind me, "Tim, you have to lay down." I had no idea why Wilson was there, but if he said lie down, I was lying down. Without Wilson, it probably would have taken a couple of nurses and a return to the wrist straps to keep me in place. We went through the "don't get up" drill several more times during the dialysis session, but I like to think I always listened. Wilson saved me a lot of pain.

Let me give you an indication of just how loopy I was: Once I was aware enough to talk, the doctors would periodically ask me three questions. "What's your name?" "What year is it?" "Where are you?" I was always good with my name, I could never remember if it was 2009 or 2010, but for some reason I became convinced (and told several doctors over a two day span) that I was in a refrigerator house somewhere near the Arctic Circle. And I believed it. Slowly, reality seeped back in, but that's where my head was. (As an aside, you should know that earlier in my career, I had the opportunity to spend three weeks in a "refrigerator house" in beautiful Thule, Greenland--about 400 miles north of the Arctic Circle. It was actually more of a "reverse freezer", keeping the warm in and the cold out. So this wasn't completely divorced from reality.)

More later in the week, with my insights into some pictures that you've already seen.

Have a great week.

Quick Update

Real quick update for you, more narrative to follow tomorrow (I promise).

Results from the CT scan came back. Lymph nodes are all shrinking appreciably, so we're going to do another round of Rituxin and Fludarabine next week. This time I will get the Fludarabine for four vice five days, and will be getting a shot at the end of next week that will encourage white and red blood cell production. I'm still going to treat the following week as if I've had a white blood cell crash, and take all the precautions I would take in that case.

Creatinine levels (indicative of kidney health) are down to 1.5, which is in the normal range. Blood pressure is still a little elevated due to the kidney issues I've gone through, but not so high as to need medication. We're taking a wait and watch approach.

Weight is still steady at around 194, about 16 lbs lower than when I went into the hospital. I do not recommend this as a weight loss regime.

I have some good narrative and pictures from Monday's trip that I'll share tomorrow.

New Addition to the Family

No, not that...please. While I haven't mentioned it, our air conditioner has been dead for about the last four months. Having grown up in South Louisiana without central air for most of my young life, I was reminded of how much I hate not having it. At least then, I didn't know what I was missing. Not that Maryland in June approached the sauna in which we were raised. Even on hot days, the inside temp here never got much above 83, but the humidity was terrible. In Louisiana, we used to say, "It's not the heat, it's the humidity." (I'm sorry, that's Phoenix--in Louisiana it was the heat AND the humidity.) Now that we're looking August in the eye, we decided our hand was forced. One credit card later and the good folks from our favorite HVAC company (for the locals, it starts with a "T") came out yesterday and put in our new unit. The happiest of us all is Sunshine, who missed her magic vents in the floor where the cool air came out (see picture to the left).

Other summer items: "Hey Tim," you say, "Considering that brushing your teeth was a major physical effort just two weeks ago, how the heck are you mowing the yard?" To quote Paul and John, "I get by with a little help from my friends." Or more specifically, Jack S., who has come by twice on his riding mower (which I'm coveting) to mow the lawn. There is a trap into which I refuse to fall: If you do something for someone once, they'll be grateful; if you do it for them twice, they'll expect it as a natural right." I vow here never to take for granted or be less grateful to Jack.

Tomorrow, I head up to Georgetown for a full body scan, which I will discuss with Dr. Cheson on Wednesday. Probably not a lot to report until then, but I will be going up to ICU to see if they have a toy Robbie may have left behind. I'll try and capture my impressions returning to the scene.

All for now. Have a great week.

Random Thoughts, Little Victories and Little Blessings

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Here are a few thoughts that have to occurred to me over couple of days.

Not that I'm complaining, but I'm feeling a little rooked. As I may have said before, I have no memory of my first week at Georgetown past my arrival in the cement mixer--I mean ambulance. But from reading Liz's blog entries and listening to the stories of those whose were there, I probably had a near-death experience. I'm a little miffed, because I DON'T REMEMBER ANY OF IT!! Elena tells me I was looking at people in the room she couldn't see. My heart function was down to 15%. I might have seen it all--the light, the tunnel, Teddy Roosevelt (well maybe). But thanks to the medications I don't remember a thing. And I don't want to get this close again for a long, long time.

Little Blessing: As previously reported, Liz was on travel this week, making it "Guys' Week". On Wednesday night, I had the pleasure of watching the Robster eat his first taco. There's a decent Mexican restaurant nearby and Robbie was feeling adventurous enough to try his first dishes from south of the border. He got the "taco, rice, and beans" plate and a virgin strawberry daiquiri. Verdict? The appetizer chips were good, the taco was "good but messy", and the beans were adequate. The rice was hands down his favorite. Afterwards we went down to the waterfront where I answered his machine-gun-paced questions. I've learned that there's no need to put a lot of effort into my answer, because the next question will be asked before I get an answer out anyway.

Little Victory: Next time you go up the stairs, notice your feet. Before going in the hospital, I ran up stairs on the balls of my feet. In fact, the balls of my feet were the only thing that touched the stairs. The first week I was home, you would have thought I was following a Sherpa up the Hillary Step on the last push to the summit of Everest. Each foot--the whole foot--firmly on the step, most of my weight on the forearm resting on the banister, stopping halfway up to catch my breath. Now I find myself back on the balls of my feet. Little victories.

Some people (including my doctor) don't understand how I could have survived with only 15% heart functionality. While it's easy to guess that, as a civil servant and a supervisor, I only use that much of my heart anyway, the real answer is a little more complicated. Actually, at the moment when my heart function was at its lowest, I had a moment of lucidity during which I made myself believe, with all my heart, that I had just decided to return all the Christmas presents and decorations to the Whos in Whoville, and my heart grew three sizes that day. That returned me to 45% functionality and the rest is history.

Still not expecting sypathy, but still having the damnedest time keeping weight on. This is like bulimia, but without the acid-etched teeth. I am absolutely looking forward to going back to a normal diet.

I'm also crafting a "baby steps" yoga program to start gently adding some tone and strength to my upper body. If anyone makes the mistake of showing any interest, I'll write it out for you. You've been warned.

Glad to say there's no medical update. Temp has been fine, I'm feeling fine if occasionally tired, so no complaints. I'll do my best to keep it that way.

Bless you all,

Tim

P.S. My brother-in-law Buster, he of the quadruple bypass, has been up and walking around for about a week. Still hasn't mowed the lawn, though (lazy bum). ;o)

Tim's Wild Weekend and Creatinine Update

It's been a busy several days, but I didn't realize it had been almost a week since I last posted. My apologies to those of you who have been so faithful in your reading. I'll try not to leave you hanging again.

Before I begin, two things I thought I’d never say: 1) “I really need to gain weight.” and 2) “I am so sick of eating.” I’ve eaten food over the last two weeks that would have put 15 lbs on me five months ago, and now I’ve gained 1. There is no justice. [pause for expressions of sympathy and understanding]

I've got news, medical and social/family. First social.

To all who are wondering, I'm feeling better and better every day. I am much more mobile, and while I still get tired, it's much better than even a week ago. So much so that I'm allowing myself one "adventure" a day. These mostly involve going somewhere and sitting down to watch something (I've changed my definition of "adventure").

Liz and Robbie left Friday for her family's annual reunion in New Jersey. I really would have love to have gone, but I could tell the travel and party were still outside my limits. After seeing them off, I accepted the offer of my friend Robin, who took me--along with her family--the an orchestra performance at the local college, complete with an incredible jazz singer (Hilary Cole--look her up in iTunes) and a fireworks display at the end that exploded overhead while the orchestra played "The 1812 Overture". It was great. At intermission I ran into my friends Alan and Nancy, who invited me over for dinner the evening of July 4th. They were going afterward to their next door neighbors', mutual friends Chuck and Jenny. Chuck later made the invitation official.

Wonderful dinner of BBQed shrimp and grilled vegetables followed by a great fireworks show. Chuck's backyard had a incredible view of the festivities without the usual parking problems. Also saw many other friends at Chuck's who were suprisingly happy to see me (hmm, I don't think I owe them money). Thanks to everyone for a fabulous Friday and 4th.

I went to church on Sunday and received an embarrassing, heartfelt "welcome back". Went into work to say "hi" yesterday for an hour or so, and again today to see a friend graduate from a development program on base. Other than that, I veg.

On Monday, Liz left for a trip. My sister-in-law Jennifer was standing by to come up and help with the Robster. After some thought, I told her that I would go it alone. I'm feeling better and I thought it would be less disruptive for Robbie to have just the two of us in the house. It has worked out like a dream. He has been (with some small exceptions) an angel.

OK, medical news: had a blood test yesterday. Now a little background: each of you, as you sit there, are producing through your kidneys a chemical called creatinine. The normal range of creatinine is 0.5 to 1.5 (units unknown). Anything higher is a sign of reduced kidney function. While I was in the hospital, my creatinine levels were 56782. OK, not that high, but high. When they released me, my levels were at 5. Last Monday, I was at 2. I had an unreasoning fear this week it would be higher again. No fear—I am at 1.6, meaning nearly normal kidney function. I’m not out of the woods, but it’s mostly scrub around my knees these days.

Thanks so much for your continued interest and support. Really, thank you.

Tim

P.S. Happy Anniversary to Cristina and KC.

The Power of Prayer and a Medical Update

Thanks to all for the kind comments and good thoughts.

Thanks particularly to all those who included me in their prayers. If you wonder the effectiveness, or if you'd like know what a miracle looks like, it looks like this: sitting listening to your five-year-old son reading "Green Eggs and Ham" just three weeks after the ICU Lead Attending Physician told his team, "We're going to lose this one." I'll claim a small amount of credit for general cussedness (he didn't know who he was dealing with) but I know that the prayers and positive thoughts pouring in from all of you supported me in the times that were touch and go.

SHORT MEDICAL UPDATE: Went to Georgetown yesterday to have an electrocardiogram and to see Dr. Cheson. My heart appears to be in fine shape, I'm still in the clinical trial (although we may have to rethink the dosages), my kidney function is getting better as I flood the creatinine out of my kidneys, and the infectious disease people don't want to see me any more.

LONGER MEDICAL UPDATE: Unofficially (as interpreted by the tech performing the procedure, a great guy who is also a Navy Chief corpsman), my heart's in great shape, all valves firing, functioning at 100%. This is up from a low of 15% during the "bad week". As a aside, Dr. Cheson said he had never heard of a number that low. We got into see Dr. C. at 1:00 for our 11:30 appointment. Every person who had seen me at the ICU was visibly shocked when they first saw me in the exam room. All agreed my looks have improved. I have a several appointments in a couple of weeks--full body CT scan on the 13th, Dr. Cheson on the 15th, and working for an appointment with nephrology (kidney) folks on the 17th.

One slightly disquieting item. There was some fear that I might have a fungal infection in my central nervous system, so to combat that possibility, I was perscribed a two-month supply of a drug called VFEND. Without insurance, the VFEND would have cost $5200. I took it for five days and was then told, "Spinal fluid cultures came back negative, no need to take the VFEND." I'm going to work with my father-in-law, who's on the board of a Free Clinic around Appomattox, to try and find if something useful can be done with the rest. I understand the clinic may be able to swap the dispensed drugs for new drugs with the drug manufacturer. Gives you some insight into just how expensive drugs can be, and why some kind of health insurance/safety net is so important.

There's more, but one of the interesting side effects of fighting arm restraints while out of your head for several days is nerve damage in your wrists that runs up and makes all your fingertips numb. Great for typing. And I'm not fixing typos--figure it out in context.

Thanks again. Sometime soon we're going to have a "thank you" party/cookout here at the house. It will be driven by Liz's schedule, but we'll keep you posted.

Thanks again,

Tim

On The Mend

Hi all,

It's about 6:30 Sunday morning and I thought I would let you know how things are going. Quick answer is "slowly better". I'm taking a couple of naps a day, and otherwise trying to take things in a deliberate approach to rebuilding strength. I got on the scale this morning and found myself below 200 lbs for the first time in 12 years.

Another interesting issue is that I was strapped down/restrained for several of the first days in the ICU. I must have fought that, because both shoulders are painful, particularly at night. Also, my last couple of nights on the general ward shredded any sleep schedule I had. As a result sleeping through the night has been difficult, but it is getting slowly better. I was probably up 4-5 times last night, but it was the first night I didn't wander downstairs for a while.

Liz is in Seattle for a few days for a long-planned half-marathon (God knows she deserves the stress release) and has left Robbie and me in the loving care of her sister, Kate. Kate has been my sister-in-law for almost 19 years, and we've talked more and more substantively over the last three days than we did in the time previous. She is a wonderful, kind, and informative person. I sorry I waited so long to get to know her this well.

Kate has convinced me that my body needs calories to rebuild, so yesterday the three of us went to a local diner. I had my first chocolate milk shake in years. This morning I had a PB&J sandwich and a banana for breakfast.

On Tuesday, it's back to Georgetown. First for an echocardiogram to ensure there was no heart damage and then to meet with Dr. Cheson.

Vic L.: love the icon picture (you sexy beast).

One last note: my brother-in-law Buster came through his quadruple bypass surgery great and should be going home today or tomorrow. Thank you all for your prayers.

Home again, home again, jiggity jig...

Well, this is Tim, and I'm home in Leonardtown. I'm weak as a kitten and phenomenally happy to be here--and you can take that "here" anyway you'd like. It will be another two weeks before I'm ready to go back to work--I really am that weak.

Here's a current picture. It's after the first shower I've had since this whole thing started.
I am profoundly grateful to everyone who provided support through this ordeal, and it has been an ordeal. By support, I mean interest, prayers, concern, etc., but I am most particularly thankful for those of you who were so helpful with Robbie and Liz, including Kath and Mike, Mindy, Peggy, Art and Andy. Another group to whom I'll never adequately be able to thank includes my brother Wilson, my sister-in-law Kate, Jim and Elena, my father-in-law Chuck, and my Mom. I love you all.


More soon on my perspectives of my last few days, and how for a while I despaired of ever leaving the hospital. I'm going to rest a little now, but two last things.

1) Congrats to the 2009 National Champion LSU Baseball team, and
2) Please keep my brother in law Buster Briley in your prayers, as he is coming of triple bypass surgery yesterday. Hang in there, Buster.

Moving out of the ICU

It was a good feeling to see the empty bed, and Tim sitting up. He's moving to the general ward probably tonight. As a note this is probably my last or next to last post. (Though I may be invited back occasionally.)

The immediate crisis I think is over - though the longer term fight remains. I have appreciated being able to communicate with everyone. My thanks are not nearly enough for all the support, but they are heartfelt nonetheless.

Take care, Liz

hello from the icu

you will no doubt notice a diminuation in the literary quality of this blog entry, because it's Tim writing this. My hands still feel swollen and unused to this kind of work. I'm being scheduled out of ICU tomorrow, and will probably be home later next week.

More thanks to those who deserve it next week, when Wilson and Liz can help me recreate the memories I've lost.

Whew - I'm tired, happy but tired...

Today is a landmark of sorts for a number of reasons - Tim showed significant improvement again today, Robbie saw him for the first time since he was on the ventilator, he is no longer on any kind of breathing support (no supplemental O2), and tonight is the first night he will be by himself in the hospital.

Wilson went home today after 5 nights in the hospital sleeping in Tim's room on the recliner they have in there. While it's a reasonably comfortable recliner, I cannot imagine sleeping on it for 5 nights. I mentioned this to my sister (who slept on it for 3 nights), and she said, "I have nothing but complete respect for Wilson. It would have been really hard spending 5 nights straight there." I like to think that the fact that someone was with Tim for the most critical time he was in the hospital made a difference. I had a conversation with Louise B. last night, she told me much the same thing my sister told me. Quotes mine but generally - "Having an advocate with the patient all the time makes a big difference. Family notices things that even the best professionals sometimes don't. Knowing that there is someone always there, invested in the patient outcome, leads to even more complete care." Understand that I have nothing but respect for all the professionals at Georgetown: Julie, Tracy, Diane, Z, Vanessa, Carrie, Michelle, and everyone are incredibly competent people who I respect completely. It was still nice to have Wilson and Kate there.

Tim was Tim today - though pretty tired. I brought Robbie to see him and it was obvious that a 5 year old is completely out of place in an ICU. He was appreciated by all of Tim's doctors/nurses though, who have seen pictures and heard stories about him for the past week. Robbie was a little scared of Daddy at first. Despite my best efforts - he was unsure around Tim and the medical equipment. I think the fact that Tim was awake and couldn't interact with him in the way he is used to was the main reason. It took a little while, but Robbie held Tim's hand and told him he loved him, in between drawing a really big battleship on the whiteboard they have in Tim's room. It looks like Tim will be probably moving out of the ICU to a regular room on Monday. I'll let you know how that goes.

Tim read the entire blog (with the exception of this latest entry) and said, "I don't have words, thank everyone again." I think because he doesn't remember all of what he went through, which is good, he is still trying to process just how ill he was. Hard to get your head around I would imagine.

He will probably take over blogging in the next few days. Take care. Liz

He's back....

All, Tim is still Tim and he's awake, responsive, and still has his sense of humor. He was actually cracking a joke or two with Wilson today. A HUGE improvement from yesterday. (Kim B. - you're right sometimes a setback sets the stage for a big improvement) He still has some issues - occasionally not responding, diminished renal function, and there are a few things that the doctors are still worried about. But, in case you wondered - the photo with the thumbs up says it all.

Tim is still in intensive care until all the issues are resolved to the ICU team's satisfaction. It will be at least a few days. I was able to confirm with him today that he'd prefer family only visitors until he's out of the ICU. (The ICU does not lend itself to any sort of privacy and Tim is a private guy.)

I actually took the photo to show Robbie how Daddy is. I'm going to bring him to see Tim tomorrow and I think the preparation helps. Robbie went to visit Tim in the ICU when he was still on the ventilator. He'd been asking about him, so I took a picture to show him. "Do you still want to see Daddy even when he has a breathing machine?", I asked. "Yes Mommy, Daddy has a really cool ROBOT breathing machine." I hope that even in the fog he was in at the time, Tim could hear his son. Especially when we let Robbie shout "I LOVE YOU DADDY!!" really loudly. Sometimes, you just have to forget about "inside voice".

Keep the comments coming, I've told Tim about all the people who have been concerned. Liz