Saturday, March 31, 2012

Days of Grace

Backyard beautification project blooming
        Dear friends, yesterday was the portentous "day 100" since my transplant.  People ask how I feel and my most frequent response is "I feel ridiculous".  This use of "ridiculous" is borrowed from SportsCenter, when, a few years ago, one of the anchors (I think it was Stuart Scott), started saying things like "check out this RI-DICULOUS dunk by Kobe Bryant".  Of course it means "insanely great".  I even said to Dr. Kritz that if I didn't know what had happened during the past 6 months, the only sign I would have that something was amiss is the tingling in my  toes (and the 27 pills I have to take every day).
        My main message today is that a week or so ago, I looked up the prognosis for Richter's transformation for the first time.  Neither I nor Renee, nor my sisters, nor my parents had checked this out when I was diagnosed - I know that many of you did, and I am grateful that you didn't share what you found with us.  The mean survival interval is between 5 and 10 months.   As we digest this information and 'review the tape' of what occurred between September 20th and now, there are a lot of things that stand out.  First and foremost, we now know that several critical things had to happen exactly right, and at exactly the right times, in order for my earth-suit to make it through this alive - and they have.  Quickly, they are (a) early diagnosis (b) immediate aggressive and successful chemotherapy establishing remission and (c) followed by immediate, successful allogenic stem cell transplant.  I believe without hesitation that the prayers of everyone - friends, family, colleagues, prayer groups, sunday school classes, many people who do not know me, but know a relative of mine - MATTERED.  I will be forever grateful for all that support.

        Secondly, we are astounded at the expertise of and confidence expressed by Dr. Keating - we always thought he was a great doctor, but looking back at the meetings we had with him, when he knew what I was facing, knew the statistics, but also knew the narrow treatment path that offered hope for a cure.  That's what he pointed us at, and he never once talked about anything else but curing me.  To me, he is a giant in medicine and a hero among men.
        Having said all that, I called this post 'Days of Grace', because without the Lord's sovereign blessing, I would not be where I am today.  He is the ultimate source of our lives, and He has tried very hard to get us to understand that a) He is in control of our lives, not us, and not chance, and b) that He has something prepared for us that is much more wondrous and beautiful and eternal than anything this life has to offer.
        One thing I have thought about over the past 6 months is that if we really believe in the Creator God and if we really believe in Heaven and eternal life, why do we pray for long life and no pain here on earth?  We should pray for that which prepares us best for Real Life, the Life that Jesus promises us - Life with Him, Life in Him.  I believe that what I have been through is a God-send because it has brought me closer to Him and conformed me more to the image of His Son - who suffered for us.
        I stress again that medically, I have not been declared cancer-free, and it will be years before anyone declares me "cured".  I hope to find out around April 26 whether I am cancer free or not (return trip to Houston).  Meanwhile, we are praising the Lord for these Days of Grace.  Next week all Christians will be celebrating the death and resurrection of the Lord Jesus.  I think this passage from Philippians chapter 3 is really appropriate here, Paul speaking:
        "Whatever gain I had, I count as loss because of the surpassing greatness of knowing Christ Jesus my Lord.  I have suffered the loss of all things, and count them as rubbish, in order that I may gain Christ and be found in him.....I want to know Christ - yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead."
        God Bless you - Dan and Renee


Wednesday, March 21, 2012

I TWEET, THEREFORE I AM A GEEK

The Official North Carolina State Flower (Dogwood!)

Hello all, things continue to move along in a positive direction - my counts are not too far off of normal.....we've been focusing on white cells a lot but (praise God) they seem to have begun to stabilize.  My platelet count is still below 100,000 - to get to "normal" I need to be over 130,000 and the normal range extends to 400,000.  Also, my red cell count, hemoglobin, and hematocrit levels have all been below normal since the transplant.  On the white cell front, my lymphocytes increased from 2.5 to 3.4 without any neupogen shots - which indicates that the suppression of these cells was caused by the Valcyte which was stopped a couple of weeks ago.  I am still waiting for the result of my last CMV draw, which was Monday.  Two negatives in a row, praying for a third.

I got on the blog today to tell you that   I've signed up for a twitter account - my username is DKRooker.  I thought it would be cool to 'tweet' brief updates at this point rather that write lengthy blog posts - but we'll see how many of you 'follow' me on twitter.  I promise if you follow me, I'll follow you :-).  Go to Twitter.com and get set up in 1 minute if you're not already a tweeter.  There's a cool tutorial there too that will advise you on different ways to use it. It's oriented to quick, rapid status updates and people send cool links (like I just got a tweet from James Taranto of the WSJ with a link to an article...)

Please let me know how you are doing.  (dkrooker@gmail.com)

Oh, almost forgot - today's music recommendation came from my "classic rock" station on my cable TV box.  Today I am coining a new term, "Hope Rock".  It came to me 30 seconds into this song, which I bought from iTunes as soon as practical ( I was working out - on that topic, I power walked 5 miles yesterday!).  Another example of hope rock would be "When Love Comes to Town" by U2.  Are you with me?  What are your hope rock songs?







This last song has some great lyrics for Easter - written by Bono - "I was there when they crucified my Lord - I held the scabbard when the soldier drew his sword - I threw the dice when they pierced His side - BUT I'VE SEEN LOVE CONQUER THE GREAT DIVIDE"  AMEN!

Sunday, March 18, 2012

Spring's Sprung

That's Kenyon, behind that beautiful Rainbow and those Foster Grants
            I'm always apologizing these days for lagging between blog posts, but in fact it is a good thing.  I tend to update more rapidly when there's a crisis brewing and I need the prayer warriors to engage.  I guess that's human nature.  Tell you what - my cell # is 919-649-4926, and I invite you to call between posts if you're anxious because you haven't heard from me.  Seriously - feel free to call, and thanks for your concern.

            Kenyon and I went for a 2 day fishing trip out in East Tennessee this past week - we floated the Wautaga River for a couple of days and took about 25 early spring Rainbows and Browns.  Very good therapy!  I don't generally brag on my kids - except to say that we are a close family - but I wanted to share with you something Kenyon shared with us while Renee and I were in Houston.  With Rachel at college, he was on his own here at home - he had some adult supervision, but being without us for 3 to 4 months was a  real challenge for him - he did great, as did Rachel out at UNC-A.  This is a song that he sent us that he said spoke for how he felt.

http://www.youtube.com/watch?v=m-sZvY2-tIw&feature=related

That truly pierced my heart - I can tend to be critical and the song just nailed the situation - Kenyon was becoming a man through this trial.  That's one of the many great things about music - all types of music can speak to me - and the lyrics don't have to mean to me what they meant to the writer.  Jonny Hetherington may have been writing about a girlfriend, but I can hear my son speaking to me through the same words.  I am so thankful for my children!

            Quickly on the medical front - my white count got really high - ANC was up at about 8,000 - as I responded to the neupogen shots and the medication for the CMV was reduced.  Very thankfully, my last 2 tests for CMV (March 16 and March 9) have been negative.  We backed off on the neupogen shots earlier this week and my ANC is back down to about 2500 which is "normal".  Other counts - hemoglobin, platelets - are good, but still below normal.  I feel very well, and I am working out every other day on the stair master, and doing outdoor walks (last one was 4 miles) on intermediate days.  Spring is in the air which means there is a TON of yard work to do, but I am under doctors orders to do no such thing for a year.  And no, I am not happy about it - I love to be in the yard.  So, guess who it all falls to?

Renee on "creek duty"
Yes, unfortunately it is Renee.  It's a labor of love for her (and me), but we are really looking for a part-time helper to get a lot of it done.  We've bitten a lot off over the years and we continue to bite off more.

Anyway, I need to run - hope all is well in your end of the world.  And if I don't speak to you before, have a wonderful and blessed Easter.  Dan and Renee

Oh, one other thing - my return trip to MD Anderson for my 100 day assessment will be the week of April 23 - we moved it from March 26 to accommodate my 1st T-cell infusion.  More on that next time.

Thursday, March 8, 2012

News - Delayed, but Good!!

Mr. R. B. Trout with Mr. Rooker (Dad), who caught it, looking on. 


Hallo folks....well it's been a week now and once again, I am delinquent in passing along good news....on Monday, Jessica (Dr. Kritz' physician's assistant or PA) informed us that the last test for CMV - the pesky little virus - was negative.  That was great news, but you may recall that after it showed up uninvited in Houston about a month ago, it went away and then I had two negative tests before it came back positive a couple of weeks ago here in Raleigh.  So while it is a cause for rejoicing, we need to pray that it stays away.  Other good news from Monday included a strong white count, including a 4100 neutrophil count - that number was 100 about two weeks ago - so that was great news.  My platelets also joined the upward march, ticking up about 10,000 to around 65,000.  Renee and I were on the proverbial 'cloud 9'.

Many people ask whether a strong neutrophil count (ANC) such as 4100 means I am not susceptible to disease or infection - the answer is no - I am certainly less susceptible than I was when that count was 100, but there are two other reasons I am still exposed to infection - one, my immune system in its entirety is still extremely immature - when the transplant is done, the new cells forget everything they learned in Laure's body - they are sort of a 'clean slate' - they have yet to relearn what to attack and what not to attack.  In fact, I will have to go through all the usual childhood immunizations again!  The second reason is related to the first - I am on a drug that suppresses my new immune system because it is not yet familiar with its new surroundings - if it were not suppressed it would attack things it isn't supposed to attack (like a liver). I can't quantify the difference in susceptibility but one difference is that with an ANC of 100 they recommend I stay home, while at 4100 they say go ahead and go out, just don't sit in crowds, stay away from sick people, don't go to a childcare facility and start kissing toddlers....etc.

One of thousands of stunning lakes in the Canadian Rockies (2010)


I go to the clinic tomorrow for a blood draw - no doctor visit.  I'll see the doc Monday and I think they will have another CMV test result that day.  It has been a great week;  I popped in to work on Tuesday unannounced and because there happened to be a customer in town for a visit, the office was full, so I got to see a lot of my colleagues, which was a real treat - I had not seen most of them for 6 months!  I also went to the practice range at my club and swang  ;-)  the golf clubs for the first time in 6 months....very rusty, but I hit some good ones, which made me smile.  I also worked out a couple of times and did a 3 mile walk, so I continue to be blessed with a great recovery.  Only the Lord knows what tomorrow will bring - but I am enormously grateful for these wonderful days with Renee, Rachel (home for spring break) and Kenyon.  No new pics this week - hope you enjoy the old ones - these will be hanging in my home office shortly.

On the wild, uninhabited south shore of Maui, 2002


With enormous gratitude for your friendship, prayers, and support - Dan and Renee

Thursday, March 1, 2012


Click this link to hear "This Good Day" by Fernando Ortega


        My clock says 6:17 am.  That's a good thing, because it means that I am needing less sleep;  I take that as another sign that my body is recovering.  I have to apologize to those of you who are following me closely and any others that have wondered how I have been doing since arriving home on Sunday the 19th of February - I've been negligent in keeping you updated.

        The good news is that I feel great(!)  It is SO great to be home, and just in time to see the beginnings of spring.  I have almost no evidence of sickness - when I saw my PA (physician's assistant), Jessica, the other day, I listed my "complaints" (that's a medical term!) as - tingling in my feet;  dry, irritated skin;  a slightly runny nose....you get the idea - nothing serious.
 
       More good news is that my sinus congestion has improved - I saw an ENT doctor here on Tuesday and he was very pleased with the improvement - I've been on the antibiotic Cefepime for 3 weeks, and this doc (he's an ENT, and those of you who know the 'Lord of the Rings' know that when a bunch of Eye, Nose, & Throat docs get together for a conference in Scottsdale, it's called a what?  an "ENTmoot"!!  Can you hear me snickering??)...um...where was I?  Oh yes - this ENT, Dr. Price, prescribed another 3 weeks of intravenous Cefepime - that's significant because it means I need to have my CVC (central venous catheter) in at least until that prescription finishes.

Mrs. McElrath's class at Flatrock Middle welcomed me home with this texted photo

        The bad news is that my white counts have crashed due to a medication that I have been on for about a month - it was prescribed because a common virus has activated in my system (abbreviated CMV), and it needs to be treated quickly and aggressively because it can cause "nasty lung infections" as Dr. Kritz put it.  It responded well to the new drug, valcyte, but when I was tested again upon returning home, the virus had returned, albeit at a very low level.  Meanwhile, I've been to the clinic three times since arriving home, and my absolute neutrophil count (ANC) has been 500, 100,  and 300, despite aggressive neupogen treatments (shots!).  So, at the moment, I am on critically-neutropenic protocols...hyper-vigilant about hand washing, staying away from sick people, crowds, etc.  Of course this is FRUSTRATING because I really want to see my friends, go to church, pop in and see everyone at work, etc, but prudence demands that I hold off.

One of our 3 dogs, and my personal favorite - Brodie
        So what am I doing to keep busy?  Renee and I, inspired by apartment living for 3 months, are going through ALL our accumulated "stuff" and donating, trashing, cleaning, and reorganizing everything - closets, attics, kitchen, my office...for one.  Two, I have set up a new workstation around my new MacBook Air and I am enabling, customizing, and learning how everything works and integrates.  Three, I have to get started on doing my taxes for what will be a very complicated tax year (2011).  Bible study and quiet time, exercise, medications (not a trivial time drain with IV antibiotics 3X a day), and cooking fill up all the rest of the available time in a day.


Congratulations to the kids and thanks for the donations in the fight against cancer!

        For reasons only known to Him, God has brought me through the valley of death and set me back on solid ground - for the time being.  He is sovereign in the universe and in my life - I am enormously thankful for His grace and His healing which was an answer to many prayers, and I am also grateful to all of you who continue to support me through these trials.  God's plans are known only to Him until they are revealed to us each new day - but we can know in advance through His word what His plan for our lives is - 

        "For we KNOW that in all things, God works for the good of those who love Him, who are called according to His purpose.  For those He foreknew He also predestined to be conformed to the likeness of His Son, that He might be the firstborn of many brothers (and sisters)."  Romans 8:28-29 (emphasis added)


      So I know that no matter what happens, whether good news or bad, whether a hum-drum day, or a mountaintop day, or a deep valley day, that God's plan for what happens that day - everything that happens that day - is that it will make me more like Jesus (conform me to the likeness of His Son) - but I have to be a willing student - and I have to be counted among those who love Him.  I believe that as I follow these great teachings, I will be counted among the many brothers.  Praise God!  To me, this is everything - 'such a great salvation' - it puts life into an eternal perspective - it infuses each day, each encounter, each challenge, each blessing - with eternal importance, with the most consequential significance as I try to 'store up treasures in heaven' and walk with the living God, Creator and Savior - how amazing!  Amazing love, amazing grace.

        Congratulations to those of you who have made it all the way through this not-so-wee-blather!  Take heart, for Christ has overcome the world.  More soon.  With love - Dan and Renee

PS...my clock now says 8:01 am    :-)