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?

http://www.youtube.com/watch?v=OdCVlmmnOzA

http://www.youtube.com/watch?v=38_dBew9YT0

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!

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.

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

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    :-)


     

In My Mind, I'm Gone to Carolina.....

Valentine's dinner at Miss Saigon Restaurant

And tomorrow,  I will be actually on my way to Carolina....this is a very special day - we got a call from our nurse at about 12:30 letting us know that my CT scan from yesterday was clean;  the small features that they were re-checking were not even there(!)  Also, my former tumor, now demoted to 'lesion' because it is not active, has shrunk again.  That could be due to residual effects of the chemo, but it could also be due to the beginning of "host vs. tumor effect", the miracle of transplants - where the new immune system attacks the cancer....time will tell.  In any case, after over 3 months in Houston, we are homeward bound.  Praise God in the Highest!

My leukemia nurse, Alice, said she had never heard of a patient going home on day 58.  How wonderful is that?

Friends, just a reminder that there are many challenges and milestones ahead that I will be depending on the Lord to get me through.  I am not 'cancer-free' yet - the 5% remaining CLL needs to be dealt with and hopefully will be gone when I come back for my 100 day re-staging.  Graft-vs-host-disease is always a threat, even years after transplant.  And of course, during the first 5 years after transplant (once full remission is established), the possibility of relapse is a shadow that most survivors live with.

I need to run - lots of packing to do!  We'll be on the road Saturday and Sunday, hoping to arrive home Sunday evening.  Will update you soon.....thanks thanks thanks thanks again for your prayers and support.  God has been merciful and answered many prayers!!   Dan and Renee

Flatrock Middle Schoolers jazzed about raising money for Cancer research

Hello friends, and a Happy Valentine's Day to you!  Today's blog is dedicated to Mrs. McElrath's class at Flatrock Middle School in Hendersonville, NC.  These young people are participating in the school's cancer research giving drive - there is a contest among the classes to see who can raise the most money for the school's donation, and they are determined to win!  The charity they are donating to is the Leukemia and Lymphoma Society - the class has taken a special interest in me (poster child, perhaps?) and actually texted this photo (and the one below) to me this morning.  The aforementioned Mrs. McElrath is my sister-in-law and teaches science at FRMS.  The Leukemia and Lymphoma Society (http://www.lls.org/) is a wonderful organization that supports patients (they give us $100 per year for treatment-related expenses) and also funds research into new treatments.  So all in all, this project is a fantastic way for youngsters to gain awareness of cancer and related issues through participation and fund raising.  As you can see, they are really excited about it!

Close-up of their poster (that's my likeness in the lower right)

Meanwhile, back in Houston.....I'll introduce some new terms to you today - these are some blood chemistry parameters that have always been measured in my blood draws, but have never been issues....representing liver function, we have Alkaline Phosphatase, Lactate Dehydrogenase, and Alanine Aminotransferase.  Representing Kidney function, we have Creatinine Serum.  We've been watching these this past week as they have all ticked above the normal ranges, but now the "kidney number"- this is what I call it - is back to normal and the "liver numbers" are trending back down also.  The doctor says these anomalies are likely caused by medications.  Also the virus I mentioned in my last entry was not present in my last blood draw, so that seems to be resolving as well.

However, my sinuses continue to be an issue - I had a CT scan last Friday evening that showed increasing inflammation and blockage up there, so the doc wants me to get checked out again by the infectious disease (ID) team (today) and the eye, ear, nose, throat (E&T) team (to be scheduled).  This will delay our departure from Houston until next week sometime - hopefully mid-week.  The good news (there's always good news if you look for it!!) is that I was put back on an anti-biotic starting last Thursday (at my request) and the sinuses are definitely improving.  The Lord is in control and we trust Him completely.  We know we'll head home in His timing.  He has been so faithful with us.  In a little while we are going out for ice cream with Bud and Nancy Simpson, a couple from the First Presbyterian Church who have been supporting us with prayer and anything else we have needed since we arrived here.  

Renee and I are trying to hit the 'best of the rest' eateries here in our final days in Houston - yesterday we hit this absolutely excellent Greek diner - very famous in Houston since 1977 (http://nikonikos.com/).  Here is a pic:

Niko Niko's

That's all for today.....grace and peace to you.  Dan and Renee

Sister Jill and I celebrating her birthday on February 1

Hello friends.....it's hard to believe it's been a week since my last post - I'd like to say that it's because the week has been uneventful, but I'm not sure that will fly.  I'll take things a step at a time, and you can be the judge.  As you can see above, Jill and I made the drive out to Galveston on her birthday, Wednesday of last week.  We had a very "gulf coast" type dinner and it was excellent.  One of Jill's student's family gave her a gift card, a 'love offering', for her trip to visit me and we used it to pay for our dinner - more love from the body of Christ.  Jill headed back to Illinois on Sunday - we had a great time together for the week - what a blessing Jill was to us!  She cooked and cleaned and took care of me with that great servant's heart, and enabled Renee to get that well-deserved week off.  That's giving of oneself.  I am generally avoiding crowds, so it was a quiet week - we did a lot of reading, watched a little TV, and had many long discussions about family and faith.    I have two truly wonderful sisters!

I got the results of the bone marrow biopsy, and they were in line with expectations - 5% lymphocytes remaining.  As I forecasted last week, this is the typical result (minimal disease) at this stage.  The idea now is that my new immune system cleans up the remaining leukemia - The next biopsy will be at about 100 days, or April 1.  Dr. Hosing said this was a good result, but I'll be honest - I don't ever like to hear that there's still some cancer!  Still, I trust Dr. Hosing and we are praising God for the fact that it's almost gone.  Technically I am not in remission until there's zero cancer, which we will hopefully verify at my day 100 re-staging.

I have felt very well in the last few days, thought I've felt a little nauseous in the last 12 hours.  That's been brief and easily controlled with an anti-nausea pill.  I just mention it to demonstrate again how quickly things can change - I haven't felt any nausea for weeks until today.  GVHD can present with upper GI symptoms, so it needs to be watched.  Dr. Hosing is planning to discharge me next Thursday(!), but I have to caution myself and everyone that there are still a lot of things that can happen - another example is that I have some virus that has been activated - again, it's common to transplant patients - and I'm getting another medication for that - Dr. Hosing said that the medication can disrupt bone marrow function which can affect blood counts.  So, I'm not counting on anything until we are in the car and approaching Baton Rouge :-)

First Presbyterian Church of Houston this past Sunday

An update on the young man that Anne Marie wanted me to visit - A-M asked me to visit him Tuesday evening - the first good day for me to do so was Friday - I called the hospital and asked for his room - they said there was no one admitted by that name - when I checked back with Anne Marie, she shared with me that Scott had had a miraculous recovery from surgery starting on Wednesday, which resulted in him being discharged that very day (Friday) and allowed him to head back to California with his parents.  So, I did not get to meet him this time, but praise God for His work in Scott's life!

It's great to have my main squeeze (Renee of course!) back in Houston.  We're starting to plan our exodus, though we know the plans can change any time.  Another good time to put my faith in the Lord and trust Him, getting my mind ready for whatever His plans turn out to be.  I want to share a video with you....it's very moving to me, and it's the closest thing I've seen on this earth to what I think worship in Heaven will be like.  The passion of the worshipers and the musicians/choir is remarkable and challenges me and my relatively sober worship style.  The second half of the video is the most inspiring.  I hope you enjoy it.

http://www.youtube.com/watch?v=TVeZRCIQzcI

Thanks and glory be to the Lord who has delivered me through the valley!  There may be more valleys ahead but I know He will see me through anything, and I also know that whatever comes my way, He has a divine and eternal purpose for it, which will be revealed to me in glory.  I know that my redeemer lives!  God bless you - I am eternally grateful for your prayers and support!  Dan and Renee