Wednesday, April 29, 2009

My Wednesday with Jerry

Today, because it was a short Fludarabine day, I again found myself in Room 11 with its three chairs (no waiting). While there, I met a man named Jerry who made me appreciate once again how relatively good I have it.

By now, you may be a little tired of me saying how good I have it. Hear me out.

I was on the seventh floor for my half-hour of infusion. Jerry, who is dealing with colon cancer, is being treated with a cocktail that takes 46 hours to infuse. He has to have a medi-port, and has to carry around a pump and his drugs in a bag, which he slings over his shoulder and carries everywhere he goes for two days. He does this every other week.

As for side effects, he has a very interesting one. The drugs he's taking alter the neurology of his cold receptor cells so that anytime he touches something cold, it feels as if he is grabbing a hot stove. The body part that touched the cold thing is then numb for a period of time not less than 15 minutes and up to a couple of hours. He has to wear gloves to handle anything chilled, and cannot drink anything cold. He caught himself just in time the other day. He was holding a cold Coke in his gloved hand and was about to take a big sip, when it hit him: "Don't I have cold receptors in my mouth?!" He later asked a nurse what would have happened had he drunk the coke. She told him that it basically would have felt like he was chewing red hot glass. There is a possibilty that the condition could become permanent, even after he discontinues chemo.

So again, am I happy I have all this to deal with? Nope. Do I realize that, in so many ways, it could be a lot worse? Absolutely.

This evening, Robbie and I visited Calvin and Kathleen for a little while. I had a barely used pair of black dress shoes that I thought would fit their little guy, and also was looking for an excuse to visit friends and talk "adult". Thanks, Calvin and Kath.

Tuesday, April 28, 2009

Chemo, Take Two...

There is no better--or depressing--place for a middle-aged heterosexual man to spend the afternoon than roaming the grounds of a college campus on a warm Spring afternoon. Ah, youth. The inventor of the sun dress should have a statue somewhere.

The occasion for my semi-lecherous perambulation was today's visit to Georgetown for Day Two of my second Chemotherapy series. Day One was yesterday, and both days have gone very smoothly, at least from a medical point of view.

Logisitics are complicated this week by Liz's absence. She is chairing a design review in Seattle and had signed up for a ten-mile run in Washington on Sunday before we discovered the schedule oops on my chemo. She has another ten-miler in Philadelphia next Sunday. Robbie and I will be heading up to the City of Brotherly Love on Friday to meet her and bring her home.

Anyway, I was left Sunday to dress and feed Robbie, sing a solo in church, pack bags for Robbie and myself, fix dinners for Sunshine, load everyone into the Mini, drop Sunshine at the kennel, pick up food and beverage for our hosts for Sunday evening, and arrive spent at the doorstep of Jim and Elena, where Robbie and I spent Sunday night.

We were delighted to find that not only was Elena's daughter, Taryn, there, but also her son, David. They fed us extravagently and put us to bed.

I left Robbie early Monday and went in for treatment. I had to wait for blood work to be processed (had my most recent blood work been take within the last five days, I could have used that. Mine was--of course--six days old). Mercedes, Jamela, and Mary Ellen were all in attendance. Mercedes moved me to a room with a better view after I joked about the room I was in. Thanks, Mercedes. Georgetown provided the usual Giant Bag O'Calories for lunch (tuna salad sandwich with all the trimmin's), and I was done infusing by 3:00 p.m. Back to Jim and Elena's, then back to Leonardtown. Elena and Taryn had taken Robbie to the National Zoo and wore him out. Long day for both of us.

This morning I dropped Robbie at school, along with a list of people authorized to pick him up should I get stuck in Washington. My deepest thanks to Rich, Mindy, Kathleen, and Calvin for volunteering for that duty this week. It takes a load off my mind.

Anyway, I got in at 11:00, was done infusing by 12:00 (thereby avoiding the Giant Bag O'Calories), and set out across the campus, determined to find and photograph the Exorcist Steps, the picture of which you see above. It was on that trip that I got to do the "sight seeing" referenced above. God bless those girls.

Picked Sunshine up at the kennel, picked up Robbie at school, made everyone dinner, and decided to catch up on my blogging.

A special "Hola" to Trylce, our former au pair who is following this down in Peru. A hug and squeeze to your children from us.

More tomorrow.

Tuesday, April 21, 2009

My Appointment with Dr. Cheson

EXECUTIVE SUMMARY: Dr. Cheson is pleased with my progress to date, and I'm ready to start my next cycle of chemotherapy next week.

Today was my first appointment with Dr. Cheson since starting Chemo. My appointment was at 9:30, and seeing as how I had to get blood work done first, I left at my usual 5:15 a.m. to get there, albeit with a bit of a limp. Last night, when carrying our 12-year-old bulldog down the stairs (again, don't ask) I managed to miss the last stair and come down squarely with my 208 and her 49 pounds squarely on my right heel, from which I had only recently excorcised the demon of plantar fascitis. Well, it now feels like I'll need an old priest and a young priest (given that Georgetown University Hospital is less than a kilometer away from the famous "Exorcist Steps", I figured it's a good place to look).

Anyway, weather and traffic were both kind, and I was at the hospital by 7:00. My foot didn't allow for my normal time-killing walk, so instead I went to the hospital chapel to meditate for a while. The chapel is just off the main entrance. It is simply decorated, open to all denominations but with a distinctly Catholic feel. There are nine rather plain wooden pews on either side of a center aisle. As you come in the door, there is a board and some 2" x 2" Post-it notes for leaving prayer requests--a kind of modern day version of lighting a candle. Several of the requests reminded me again that I don't have it nearly as bad as some others.

I checked with the front desk at Lombardi at 7:30 sharp and had my blood drawn at 7:45. The gentleman who drew the blood was the single best phlebotomist I have yet encountered. He was a middle-aged man who appeared to be of indeterminate South-West Asian extraction; maybe Indian, maybe Pakistani, probably something else altogether. Whatever his origins, his technique with a needle is incredible. My hand on a bible, even waiting for it as a student of the art, I did not feel the needle go in. Not even a whisper, not even a hint.

From there, I waited to be called in the back. While waiting, I ran into Jamela, from the seventh floor, who was helping out downstairs today. It was a nice surprise. At 9:30, I was escorted back to a consultation room and was soon joined by both Damiet and Katherine, who fans of the blog will remember as Dr. Cheson's Nurse-Practitioner. Katherine--charming as ever--re-measured many of my lymph nodes, calling out the names and measurements to Damiet. After the Tour de Tim, they gathered up their things and left, promising to return with Dr. Cheson.

Five minutes later, Dr. Cheson and the ladies came in. Dr. C. repeated some of the measurements with an expression on his face that caused me no small measure of relief, told me to keep up the good work, and then--poof--he was gone.

Katherine translated for me. At this stage in my treatment, after one round of Chemo, they would have been pleased with just a reduction from the March baseline of my white blood cell (WBC) count, even if my lymph nodes had grown a little. As it is, I have significant reduction in both the WBC count and in node size. It appears that I am responding very well to the treatment so far. I didn't realize until they said it how much I had needed to hear it. So this Saturday, I start back on the Allotropin, and then Monday head in for another week with my newest, bestest friends, Rituxin and Fludarabine.

After the visit with Dr. Cheson, I went up to the seventh floor to the Trials area to confirm my appointments for next week (I also stole a couple of packs of Oreos from the Trials cookie stash for the ride home) then headed for Leonardtown.

The only bad news today was that Damiet is leaving the Trials group to start her Internal Medicine residency at Georgetown U. Hospital. I wished her luck and said that I hoped that all our future meeting would be social in nature.

So--to quote Dr. David Davila, MD (a reference no one reading this will understand)--"So far, so good".

Sunday, April 19, 2009

My Trip to the Emergency Room with Mr. Superhero Fisherman

Robbie has a new name: he is now "Mr. Superhero Fisherman". As you may know, Liz and Robbie were down in Key West visiting her sister, Kate. After first checking to see how he'd react to having a live fish on the end of his line (he loved it), Liz took him out on a half-day charter boat ride. He loved being on the boat (another block checked). While on the boat, he caught a 24-inch long, 6+ pound grouper. It was the biggest fish caught that day, and earned him the (self-nominated) title of "Mr. Superhero Fisherman."

I had a different kind of excitement today. I had been feeling a little punk since yesterday afternoon, with symptoms which discretion prevents me from listing, but enough to say I knew at all times the location of the nearest bathroom. Things weren't getting any better this afternoon, and I was feeling kind of fuzzy headed, so I took my temperature. 101.6. Now a year ago this would have been in the "so what" category, but given my current situation, I called the attending oncologist at Georgetown, who suggested I get me to the nearest emergency room for blood tests.

Liz and Robbie took me to St. Mary's Hospital Emergency Room, which did not live up to its reputation for ineptitude. In fact everyone there was quite professional and quite good. The only lash up we had was when I told them "Thank you, I don't need an IV, I just need a blood test. If I need an IV, I'll go to Georgetown."

Long story short, blood work came back normal and my directions were to treat the fever with Tylenol.

So now I've had my first "between Chemo sessions" episode, and I gained a lot of trust in the St. Mary's folks.

I go see Dr. Cheson on Tuesday, so I'll probably wait until Tuesday night for the next update. I'll probably also stay home from work tomorrow--I don't need to give this to the 4.0C staff.

Thanks to everyone who continues to read this. Welcome aboard to ufgrad_90. I think I know who you are, and let me same I'm impressed that a Gator can use a computer. ;o)

Tuesday, April 14, 2009

Home Alone

Call me "Macaulay", because for the next four days I'll be home alone.

Liz and Robbie are using Robbie's Spring Break to go to Florida to visit Liz's sister. They left at 4:00 a.m. this morning to take advantage of a great 7:00 a.m. airfare. Robbie was an absolute trooper, getting up at 3:30 for the trip. They made it to the Sunshine State in fine fashion, but not until my Lad had charmed the pilot on their regional flight from Atlanta into an extensive cockpit tour. He got to play with the yoke and talk on the intercom. I guess the skill of dealing with pilots is a genetic trait.

I say I'm alone, but actually I have for company a mostly annoying cat (who frankly was a candidate for the animal shelter until Robbie renamed her "Mrs. Love Cat"--I mean, how do you get rid of "Mrs. Love Cat"? (no seriously, how?)). I also have our geriatric English Bulldog, Sunshine, for whom I am currently cooking a week's worth of breakfasts and dinners (it's a long story).

Once up this morning I stayed up. Good busy day at work. One of the best things about working where I do is that I get to work with really smart people. It is my favorite part of the job.

Yesterday I went for my weekly blood test, after almost forgetting that I was supposed to do it. Woke up and was in the shower planning my day when I thought "Oh Crap! I've got to go get stuck!" There are wonderful phlebotomists in the world (phlebotomist: one who draws blood professionally). There are phlebotomists whose touch is so delicate and sure that you feel almost nothing at all, whose needle feels almost like the tickle of a butterfly landing on your arm. Those phlebotomists were not at the lab yesterday. Instead I got Helga the Vein Jabber. She was not delicate. I believe she learned her craft at the "Sharks and Jets" School of Phlebotomy [ed. note: for the engineers, this is a reference to a classic stage and movie musical by Leonard Bernstein]. I hope the other lady is back next week. No results back from the blood test yet. Now on to my new theory.

I've recently been pondering the topic I promised myself not to ponder: "Why Me?" There are two common approaches to this question. The first posits that God has chosen me personally and specifically to inflict this upon. Either it's a punishment (if you're a "Sinner's in the Hands of an Angry God" kind of person) or like Lot I've been chosen by God to be an exemplar of how a trial like this should be borne. On the other hand, there may be no rhyme or reason: like the lightning strikes one tree in a forest, like the tornado that destroys one house while leaving the house across the street untouched, this 'gift' has been given to me without purpose or intent.

I'm not happy with either paradigm. The first lends me more importance than I believe I rate, for either good or bad. The second is a little too cold, a little too chaotic [For the non-engineers, this sentiment is captured beautifully in Thomas Hardy's poem "Hap"]. I've decided to pick a different metaphor. Bear with me.

Say you have a factory that produces flourescent light bulbs. Your factory produces 100,000 flourescent bulbs a day. You want to make sure you are producing a quality product, but you know it would be cost prohibitive to test each and every bulb you make. So instead, you opt for a classic quality control measure--the random test. Every day, out of every lot of 10,000 bulbs, you randomly pick 12 bulbs for testing. You throw 10 of them into a 110-volt test fixture and throw the switch. If they light up, they pass the test. The remaining two bulbs get put through a more rigorous regiment. You hit them with twice the normal voltage. You cycle them on and off over and over again. You shake and vibrate them in your "Vibro-Shaker 3000 Bulb Tester". If the first ten bulbs worked, and the other two survived, you can safely assume that the whole lot of 10,000 bulbs is good.

Well, I like to think of myself as a test bulb. In my theory, God doesn't feel the need to set up special tests for all the bulbs--he randomly selects a few representatives and gives them extra tests. He doesn't love those bulbs any more or any less than the others. But he does pay careful attention to how the test bulbs work under strain. He derives some inscrutable data from these tests and uses the many centuries of this data in some great cosmic analysis. This appeals to me on two levels. First, it doesn't require the ego trip of presupposing that I am a Chosen One. I'm just not that important. Secondly, it does imply that there might be some purpose behind all of this. It takes a middle road down which I find some solace.

Sure, it's just a logical construct, but it gets me through the night.

Saturday, April 11, 2009

Busy Day

Happy Easter, All.

Full day today. I went back to yoga for the first time in what feels like weeks. I had let the distractions break me out of my routine and I was beginning to feel it. Having been away from yoga, I was also afraid that I had lost some strength/muscle tone, and was making myself the "I'll get in shape, then go back" promises that always serve so well to delay or prevent a return to good habits.

So this morning I dragged my sorry arse and my yoga mat back to class. April did not disappoint--she killed us. Thank God there were no balancing poses. It did feel good to get back, though, and I will do about 20 minutes tomorrow morning.

Also scrubbed the kitchen floor, as Liz did it last and it really needed it. I'm talking "knee pads and a scrubby" kind of cleaning. The floor looks great now.

Robbie and I took the trash to the transfer station, then stopped at his favorite pizza place where we split a small cheese pizza. Scarily, he pretty much can finish his half.

Liz and Robbie head for Florida on Tuesday, so it will be a big empty house next week. I'll find something to fill the evenings. Next Chemo cycle doesn't start until the 27th.

Tomorrow I'll share my new theory in the "Why Me?" arena.

Hope the Bunny is good to all of you tomorrow.

Wednesday, April 8, 2009

Blood Work

In this case, "blood work" involves not only a phlebotomist taking my blood (which one did on Monday), but also the blood I've been sweating for work. I've been preparing a brief for Dr. Somoroff, the civilian head of the Naval Air Systems Command (the organization for which I work), on the current manning status of the Research and Engineering Group, the group for which I am the Chief of Staff. Basically, the task was to summarize (but be ready to provide details) on the shifts and projections of a workforce of over 10,000 civilians and contractor personnel. This for a man with a staggering intellect, an incredible memory, and an insatiable love of data.

This put me fairly high on the "stress-o-meter", but thanks to a great staff, some good advice, and about 15 extra hours of work over the weekend and last night, we pulled the brief together and successfully conducted same this morning.

That said, I also had my first blood draw on Monday and got the results today. So far everything looks pretty good. Almost every test came back normal. The only areas where I was out of tolerances were:

Red Blood Cell count, where I was a little low;

Mean corpuscular hemoglobin (MCH) where I was just out of 'normal', but within normal averages I found online;

Mean platelet volume (MPV)was a little low;

Blood urea nitrogen (BUN) and creatine level--which tell you how well your kidneys are working--were slightly high;

and a few others.

Nothing unexpected or worrisome.

So, so far, all is well.

Saturday, April 4, 2009

Chemo Cycle One is Finished!

Well, Round One is finished, and other than the fatigue associated with getting up every morning at 5:00 to drive two hours to DC, then two hours back to work, I don't seem to have any bad side effects. Well--almost no bad side effects. I did have to spend most of what has proved to be a BEAUTIFUL Spring day locked up in my office at work, catching up things I didn't get to last week.

So far I've had a different nurse every day, now including Anita, who helped my yesterday. I must be a difficult patient. I have been negligent in not introducing you to Marta, who schedules all the rooms and patients. Blog, Marta. Marta, Blog. I also met Shirleta, the head technician in the pharmacy. Jamela came back from her much-deserved day off and did her usual outstanding job.

It was back into Room 11 yesterday, where I was infused to the crashing of thunder and beat of heavy rain outside the window. A strong system swept through ahead of today's beautiful weather. I was back in the car by 10:00, into driving rain that reduced visibility and slowed DC traffic to around 40 mph (an amazing statistic if you're from around here.)

So ends the first Chemo session. I have to update the calendar, as there was a little oops on the one previously printed. My next session is the last week of this month and not the first week of May as previously reported.

On Monday I go to a local lab to give blood, and will do so every Monday than I'm not getting rituxin and fludarabine. This Wednesday I go back to Dr. Kelly, my local oncologist, just to keep that connection. Not sure what we're going to talk about.

I'm developing a theory to answer the question I said wasn't worth asking: "Why Me?". I'll share more in a few more days.

Have a great weekend.

Thursday, April 2, 2009

Session One Day Four

Great, boring day. I got to GHU around 7:50, so spent 20 minutes or so roaming the grounds of the Georgetown Medical School, adjacent to the hospital. The grounds are like one big sculpture garden--sculpture everywhere.

Back in Room 10 today, but with yet another new nurse. I guess I just keep running them off. Even Jamela abandoned me, though she did leave me in the good care of Jo Anne. Nurse Sonia inserted a new IV in my right forearm, and my fludarabine made it to the room in record time. Infusion started at 8:50 and I was done by 9:15. Nurse Mary Ellen (from Day 2) wrapped up the IV for tomorrow and I was on the road by 9:30.

Robbie is in a mood tonight. He moved out of pre-school this week and into kindergarden, but I think the lack of nap (he used to get two hours in the afternoon) is catching up to him. Liz is soothing him through a meltdown in the bedroom as I type.

One more day to go in this cycle. Have a great Friday.

Wednesday, April 1, 2009

Here's to Uncle Bud (and also, Session One Day Three)

Before I talk about today, I want to take a moment to mark the passing of my uncle, Warren "Bud" Nystedt, and to honor his memory. Uncle Bud passed away at his home in Arizona last Sunday night after 92 years of being a truly great human being. He lived most of his adult life (at least the part of which I was aware) in St. Charles, Illinois, just west of Chicago. I have several special memories of him, but the one thing with which Uncle Bud will be forever linked is Crown Royal whiskey. You see, Uncle Bud introduced me to Crown Royal at my brother Wilson's wedding when I was 17 (about two month shy of legal). Mind you, I had already met some of Crown's lesser cousins--Jack, Canadian Mist, Old Crow (God help me), but nothing "sophisticated". The night before Wilson's nuptials, a group gathered in Uncle Bud and Aunt Freida's hotel room. Uncle Bud and Aunt Freida attended every family function. From his suitcase, Uncle Bud pulled out a beautiful, mysterious purple bag bearing the legend "Crown Royal" embroidered in gold thread. To me, it was almost magical. He mixed up some highballs and without asking made one for me. Uncle Bud was tacitly acknowledging my impending adulthood, something very few people seemed to be doing back in 1976. I loved him for that. I still love him for that. So tonight, for the first time in decades, I bought some Crown Royal. In a few minutes, I will raise a toast to Uncle Bud. I invite you to charge a glass and join me in that toast in just a few paragraphs.

Today was the first day of the "Long Commute", driving from home to GUH. I left home at 5:30 and got to the hospital two hours later. I was in my favorite seat in Room 11 by 8:30, where I met my nurse for today, Rasheda. Rasheda provided further evidence that GUH hires only the best, and she promised not to play any April Fool's jokes on me. Unfortunately, I did not get a similar promise from Jamela, who caught me with the "Mr. McMichael, did you realize you have on two different shoes?" gag. Can't believe I fell for it. Jamela asked for the address of my blog, so I have to be careful to say only nice things about the Clinical Trials staff. They are going to have way too many opportunities (involving needles) to get back at me over the next six months.

My only room partner today was Mr. Benson, an older gentleman with a thin body and thinning hair who was surprisingly spry. We talked not at all--not a word passed between us. I was on the fludarabine by 9:10, off by 9:40. Rasheda pulled the peripherial I.V. (as I discovered it was named) out of my left forearm (I get a new one tomorrow (yeah!)), and I was on the road to work by 10:10.

My Mini Cooper's GPS plotted a course home that took us through downtown D.C. As I drove, I passed by the World War II memorial for the first time. Looking at the memorial, I thought of Dad, a WWII veteran of the Pacific Theater. The route wound past the famous Washington Tidal Basin cherry trees, now in full bloom. It was a beautiful, if long, ride to work. My staff had successfully kept me out of hot water and all was right with the world.

Well, I've now charged my glass with Crown Royal and Coke. Here's to you, Uncle Bud. Thank you for everything. God's Speed and God's Rest.

Damn, that Crown and Coke is still good.