What West Nile Epidemic?

Given the disciplinarian is away in Houston, dad got out of his cage during the storm to explore the wilderness with Russell (Jon), the Wilderness Explorer.  Muguet snapped some photos of dad's journey over to their house below.  The water hit fresh highs, never seen before in our lives, but didn't do any damage to most houses on our end of the neighborhood (thankfully).

And we have even better news: the waters receded enough to get the SUV accross the bridge, mom told me she could feel the waves lapping under her feet on the floor of the car.  I'm sure she handled that very calmly, and didn't stress Jon or dad out at all!

They are making the traffic-jammed journey over to Houston tonight, and are experiencing air conditioner for the first time in 3 days.  We are excited to see them!

Sissy's beginning shots of neupogen tomorrow and they will begin collecting the stem cells from her on Tuesday.  Dad has 12 appointments on Tuesday, and his schedule online is pointing to the chemo "shock" going in on Sept 13 with the stem cells going in probably several days after that.

Released Only To Be Stranded

Dad was released from the hospital on Monday, just in time to settle in on the bayou and get flooded in.  His immune system has had a big bounce (see pictured below), so they let him go.  He finally feels normal today, the harsh antibiotics really took a lot out of him.  Thank goodness he does, because the delayed departure to Houston has turned into a suspended departure to Houston, as dad, mom and Jon are flooded in without any power- as Jon said, "living the dream."

Sissy and Steven got the 2nd to last flight out of MSY on Monday night, and Sissy's donation process began today.  They took 15 vials of blood, which I think is around 10% of her body weight!  We feel guilty that we're here without any weather problems, but begged the family to come and join us for the last 36 hours.  Picture this: the jam packed diagnostic waiting room at MD Anderson, FaceTime with Steven, Sissy and Dad and Jon, screaming at each other to get out before the water rose any further.  It was a spectacle, and turns out it was too late already.

We'll be praying for all of you in the hot swamp without any power, and rising water until Friday.  Who thought a Category 1 could be such a disaster?

Carl Delivers

"An ounce of performance is worth pounds of promises." -Mae West

While he didn't really sleep well, Carl delivered results this morning. He hasn't had a fever (>100.4) since 2am last night, and his immune system is having a big bounce (see chart below comparing this round of chemo to the last round).

Central Line is a Goner

The doctor successfully removed the bacterial suspect around 2pm. Hopefully the antibiotics will knock out the residual strep bacteria and dad will lose the fever by tomorrow.

Perhaps as a result of the infection, his absolute neutrophil count had a big bounce from 40 to 227. If it keeps going and the fever goes away, we could be Houston bound in short order. Fingers (and toes) crossed.

Vanco

Dad's fever hit 102 last night, which prompted the nurse to run another blood culture. Preliminary results are showing dad has a gram positive blood stream infection (the only specificity we have now is that it's an alpha class streptococcus). They put him on vancomycin, a serious bug killer. I've put a call into the doctor to ask why such a harsh antibiotic, I believe they put dad on vanco before they even knew which type of bacteria dad has. We'll see, at least the temperature is dancing around the 100-mark now. He's been fairly light hearted this morning, being the champ that he's been this whole time.

They suspect the infection could be coming from his central line, so a doctor will likely be taking it out today.

Fever All Through the Night

I swear I haven't played that song lately (we listen to great melodies throughout the day- today was a Ray LaMontagne day), but dad is taking the lyrics to heart. He doesn't have an infection (knock on wood), but the fever has been persistently above 100, and typically around 101.0-101.7. Dad slept most of the day, and is actually feeling ok, as long as the lights are low and he's in between dreams.

We've started to pencil in plans to be in Houston starting labor day, and depending on when Sissy's stem cells go into dad, we'll probably be there until Christmas at the earliest. Sissy and Steven have made plans to head west on the 29th, she will begin a roughly 10 day process of receiving neupogen shots, and then sitting in collection chair for around 4-6 hours a day, when blood will leave one arm, get radiated to get her extra marrow/stem cells out of the bloodstream, and her blood will go right back into the other arm. Steven is thinking of magic tricks and juggling acts to entertain her for that long!

It's definitely a sacrifice we're all grateful that she's so ever-willing to make. Sissy is able to give dad a 63rd birthday gift that no one else could ever come close to matching: the potential for another 30 years of a healthy life!

Speaking of marrow donation, did you know it's really easy? All you do is send in a few Q-tips of saliva and you enter the database. If you become a match, all you do is receive neupogen shots, your marrow cells get kicked out into your blood stream, and they collect them from the blood. Only a few pricks and shots... To save a life! We just received a wonderful card from our friend Meg Merritt and she told us she had just done it, and it made me realize a lot of people reading this would be willing to help out someone in need. The registry really needs more minority donors- they are under-represented and the chances of an Asian, Hispanic or African finding a match is quite low (I suppose we should really say "majorities"). So spread the word! I'll put up another post with information on how to receive a kit if you all are interested.

"If the highest aim of a captain were to preserve his ship, he would keep it in port forever." St. Thomas Aquinas

Shaking Like a Salt Shaker

The temperature was running up yesterday, and at 6, it hit 100.9. We called dad's doctor, and came into the highly unsanitary emergency room. Dad was readmitted into the hospital and around 1am, blood and antibiotics were finally on their way back down the central line.

I arrived this morning to a shivering/shaking dad, with the blood pressure spiking. The doctor had earlier said his sodium levels were low, so we got him to start downing the packets of salt. Sure enough, whether it was prayer, salt, or the tylenol, it settled down pretty quickly, and the blood pressure is back down to an elevated 152/53, check out the time series below.

Dad is back in the saddle, just ate a normal breakfast (with some extra salt), and hopefully will take a nap soon. I put his phone on airplane mode, the "real" world I think was getting to him, and the phone was ringing off the hook. Sorry, call me if you need anything. Thanks! Steven

Hasta La Vista, baby!

One of our favorite nurses, Cindy, teared up when Carl was nearing departure today, saying, "this place won't be the same without y'all." Another great nurse told us to come by and visit when we were back from Houston. Dad was discharged from the hospital today, his immune system to still non-existent, but fever is steady and blood pressure has largely been under control these last couple of days. So really, there was no point hanging around. 5 Laurelwood doesn't have a C. diff or MRSA problem like Lakeview Regional does, although we'll miss the great nurses there- Natalie, Jonie, Chris, Cindy and Sheila among many others. Of course they all loved dad, and we will most definitely stop by after the CURE.

Dad now gets to listen to good music, read and watch movies with this wonderful view below. We are enjoying the 24/7 thunderstorm cycle we seem to be stuck on. Good ole Rainforest, LA.

Revolutionary

We can't thank our friend, Dr. Rhame, enough for sending along the Relaxation Revolution. It lives up to its name, anyone that has high blood pressure (or nearly any stress), ought to get a copy. Dad hasn't taken the Norvasc and he's worked his blood pressure down to 129/76. Campione!

He still hasn't needed any blood, but the ANC continues to go lower, giving evidence that chemo is indeed working.

"I said to the man who stood at the Gate of the Year, 'Give me a light that I may tread safely into the unknown.' And he replied, 'Go out into the darkness, and put your hand into the Hand of God. That shall be better than light, and safer than a known way.'"
King George VI's 1939 Christmas Message

Typical Drop, No Drama

Dad's had the typical post-chemo drop in neutrophils, from above 2,000 only two days ago to 98 this morning. Rather than alarming, it's a good sign that the chemo is still having an effect on his body, hopefully wiping out all residual leukemia cells. This time around, so far, he hasn't needed any blood transfusions (although we expect one any day), and hasn't run a fever.

The blood pressure spiked again this morning (190/96), but Norvasc + Relaxation Revolution has had miraculous effects and Carl closed the day at 106/59 (see pictured time series).

No fever, we're being extra vigilant so he doesn't have to hit the antibiotics again. He's got good strength and is walking a lot, but his voice has been impacted by the aftermath. It's almost as if he sounds like he has a sore throat, but he says it feels normal. Odd. Who knows what the chemicals are actually doing? As long as they kick some cancer tail, we'll be ok with the rest.

Steady As She Goes

Blood pressure remains elevated, but all else is steady. Dad's nowhere close to needing blood, knock on wood. In general, it was a great day and it ended even better: the best ginger snaps you'll ever try from Sweden.

"Life leaps like a geyser for those who drill through the rock of inertia."
-Alexis Carrel

Relaxed

Dad's been off of chemo, but they keep him on the steroids which has made the blood pressure elevated. He is working on relaxation techniques from Dr. Herbert Benson (thanks Ellen!), and these techniques are clinically validated to lower blood pressure. We think they are indeed working, the blood pressure came down from the 190's to the most recent reading of 155/80.

It was so effective that even Sweet P was knocked out temporarily. It's been a good day-after chemo, and our fingers are crossed for an early release.

"Breathe. Let go. And remind yourself that this very moment is the only one you know you have for sure." Oprah Winfrey

Once It Hits the Lips

Dad was just jonesing for some metallic chemicals, and his wish was the Doctor's command. Dad's chemicals are already 24 hours into the 48 consolidation round, and they are 10x the dosage of the round 2 months ago. He hasn't had any real reaction to them yet, but we expect a delayed response as with the last round.

The neutrophil count is 2310 this morning going into the inevitable decline. Dad feels great, perhaps the four hours of Lumineers and Paul Ryan's veep speech have helped fire him up!

Camp MDA

Apologies, a beloved family member nearly deleted this post.  I'm reposting, but the most recent post is below.

From Tuesday Night:
How much more could we jam into 24 hours? We got a call from MD Anderson at 2:45, just as Steven was trying to execute orders before the market close and Paula was calling Steven for a ride from the Ford dealer. They requested a barrage of information from us, which amounted to a 38-page fax. Picture a kid with a bewildered look in his eyes asking any nurse that would look at him for help gathering information. A total of 5 were deployed to gather info, with a few claiming certain documents were unavailable, that is until Steven asked again (less politely the second time). That endeavor was humming along, when Houston called again at 4:30 to say the appointment was scheduled for 10am the next day. Knowing the proclivity of many southern workers to "yabba-dabba-doo" at 4:59, we had less than a half hour to get dad discharged, to pickup antibiotic prescriptions, to get the stupid car from the Ford dealer, and to try and complete the information-dump request. Unbelievably, we made it all happen in 30 minutes, and dad got discharged in short order after the last blood transfusion went in. All we had to do was move all his things home and scrub down the car in order for the Nimble Neutropenic to safely get over to Houston. He was released at 7pm and upon getting in the car, said it felt like an "out of body experience." of course, Carl was in great spirits, and David and Elizabeth McMahon were luckily there to be with dad as the family hurriedly scrubbed anything to be used for his short stay at home.
We all got "a full forty minutes," or so it felt that short, of sleep and woke up at 2 to hit the espresso and pack the car. The trip was smooth for all the nappers, and we arrived with ample time to spare, as if Paula would allow otherwise.

We then received our "agenda," and met a lot of smiling people. It truly felt like summer camp, traveling from station to station, with a brief stopover in the cafeteria.

10:00 am: Monopoly (insurance, payment, and disclaimers)
11:00 am: Trivial Pursuit (nursing assessment)
12:00 pm: Kool-Aid Party (Blood specimen collection)
1:00 pm: Drills and tools shop (bone marrow aspirate)
2:30 pm: Photography (Chest X-ray)

The day ended getting the best news of all: dad's absolute neutrophil count (key white blood cell count) ramped from 250 yesterday to 762 today. He is feeling good, drinking wine, and looking forward to meeting the German-Cowboy doctor tomorrow. And thankfully that 24 hours has passed and we will sleep longer than 3 hours.

Sauron Speaks

Hello everyone!  This is Steven, back reporting after a brief working bender.

Sorry for the lack of posts, as dad mentioned, I came home for a few days to take care of biz-niss.  While crossing the midtown tunnel into Manhattan felt like entering the gates of the Magic Kingdom as a 6-year-old, I'm so ready to be back with See-Dubya (CW).

He is checking back into "love ya" Lakeview Regional tomorrow and doing 2 days of consolidation chemotherapy.  I say "love ya," because a nurse in his doctor's unit keeps telling dad that she "loves" him.  We both think this is quite interesting, and her whole team is now nick-named "love ya."  He's going into this next round of consolidation chemotherapy after what feels like an incredibly long half-time recovery, and ready to kick some cancer tail!  I even nearly poured an ice chest of gatorade all over him, the olympics were really getting to my fighting attitude.  He stays in the hospital probably 2-3 weeks, only because when they bring his marrow back down to nothing, no blood cells will be created.  So he will likely need a few more blood transfusions, but "Love Ya" said that she reserved the cloud-room for us, we'll see if she pulled through tomorrow, I have faith!

Dad thankfully didn't have to get his central line replaced, as of course Mr. Fixit actually showed the surgeon how he thought it could be repaired (it was uber-clotted).  Of course, dad fixed it.  Louisiana doctors need to take a Carl Wood 101 class!

The eye of Sauron (me, being the ever-watching and critical eye that I am), will be back tomorrow, so I won't let anyone get away with 99% or less effort, so rest assured.  But the real effort is coming from The Man himself, and our wonderful family and friends that keep dad in their hearts.  It is so wonderful that frequent and infrequent friends have been so attentive and supportive to the situation.  Dad keeps saying "I'm SO lucky," throughout this whole process, and while that may strike you as odd given he has a rare form of leukemia, the outpouring of support, best wishes, loving thoughts, a close family, and a little wine has made it really the best anyone can ask for.  All of us that wake up in the morning are so lucky, we have another day to maximize.  Dad will have thousands more, we are quite sure, and they will be turbo-charged from now on.

A few weeks ago, we watched Iron Lady in the hotel room, which we all loved.  Meryl Streep, playing the role of the great Margaret Thatcher quoted Lao Tzu in a parituclarly powerful moment, and how true it is:

“Watch your thoughts; they become words.
Watch your words; they become actions.
Watch your actions; they become habit.
Watch your habits; they become character.
Watch your character; it becomes your destiny.”

Home is where the heart is

Hello loyal, loving, and prayerful friends...
We made it back from MD Anderson last Saturday night. Sunday I was in a trance being really home (we were home a few hours before going to MD) for the first time in 6 weeks. I spent all this week questioning all listening parties what the next steps would be. The results from the bone marrow biopsy at MD Anderson came back at just under 3%, Remission! I won't stay there I'm told, even though I think they are wrong, so it's off to consolidation chemotherapy at Lakeview in Covington Friday. Two days of chemo, then two weeks of recovery. After that, it is Houston for at least 100 days for the stem cell transplant. If that takes, I have a 60-70% chance for a cure... Now I like that word and wish it would been brought up sooner.
Steven finally went back home (NYC) today to tangle with cab drivers that he misses so much. What incredible support from Paula, Jon, and Steven, tolerating hospital shenanigans and my overeating at every opportunity. I blame it on the doctors and nurses telling me to finish my plate for nutritional prowess for chemo. Bring it on, the food I mean. My new love is Raisin Bran with a 350 calorie bottle of Ensure floating it to wash it down.
Keep those thoughts and prayers coming, they sure do work.
Thank you everyone for all your kind words and treats in all forms, it sure does lift spirits and inspire healing.
Love, Carl