Friday, October 28, 2011

"Feelin' Stronger Every Day"

Casting for spooky Yosemite trout in the Lyell Fork of the Tuolomne River

On Saturday I was walking through one of those spectacular fall days we are blessed with in North Carolina, and listening to Rich Mullins sing "The Color Green", the chorus of which goes:

"Be praised for all your tenderness by these works of Your hand
Suns that rise and rains that fall to bless and bring to life Your land
Look down upon this winter wheat and be glad that You have made
Blue for the sky and the color green - that fills these fields with praise!"

It was just perfect - here is a link to the Youtube video -

I am pretty much through all the side effects of the chemo (except my hair is nearly gone :-)  ) and feeling very good these days.  I have been walking 4 miles a day for the last 3 days - continuing to regain strength and weight.  I have a few cold symptoms; runny nose, sinus congestion, a minor cough - so Dr. Kritz put me on (yet) another antibiotic to help make sure it does not turn into an infection.  On Wednesday my counts were good: whites stable, platelets rising into the 60,000+ range, hemoglobin stabilizing around 8.1, so Dr. Kritz said we did not have to do a transfusion this week - next week is still a possibility if the hemo does not start climbing.  Dr. Kritz surprised both Renee and I by telling us to come back and see him in a week - - I have been in the clinic every other day since returning from Houston - so that was a great signal that I am in good shape.  My parents are arriving for a week's visit on the 1st of November, I turn 50 on the second, Dad and I are going fishing on the 3rd, and we'll have a small gathering for my birthday on the 5th.  So there is a lot coming up, including a Hurricanes game (with mask on!) tonight with Kenyon.  All this is subject to my continued good health, for which I look to the Lord for His sustaining grace and mercy.

I continue to be amazed, comforted, and encouraged by the prayer support that so many are providing - I have gotten cards from people I have never met - friends of friends who are praying for Renee and I - it means more than we can say.  Please know that it is deeply appreciated.

Round 2 of HyperCVAD looks like it will be the week of November 7th, of course depending on my counts getting to where they need to be.  More on that soon.  God's Grace and Peace - Dan and Renee

Saturday, October 22, 2011

Surprisingly Strong Counts!!

What can I say?
Hello friends, it's always a joy to bring good news - and on a glorious Saturday that is just stunning here....about 65 degrees, bluebird sky and light breezes....I walked for about 70 minutes this morning - feelin' stronger every day...praise God.  The big news is that my counts were up substantially yesterday, particularly my whites - they were 3,000, up from about 500 on Wednesday - the neutrophils were up to 2.4, up from .3 on Wednesday.  That means that I'm no longer neutropenic, and I have a reasonable infection defense now - which is great!  My physician's assistant (PA), Jessica, said the neutrophil pop could have been in part due to a Neulasta shot I had on the 12th (but that was quite a while ago)...she and Dr. Kritz are very encouraged about the counts - my platelets came up a bit, too.  The weekend and coming week should be about as close to being normal as I have been since early September - of course we are taking everything a day at a time and assuming nothing.  Still, we are very thankful and blessed at this latest turn.  Who knows, maybe a little fall fishing this week!  hyper CVAD round 2 is still open but it looks like maybe sometime between Nov 2 and Nov 9....we should be a little more certain next week.

Rom 11:36: "For from him and through him and to him are all things. To him be the glory forever! Amen."

Thursday, October 20, 2011

Hair is Over-rated!

This is not photo-shopped - that is a Bull Trout dad caught in Missoula in '09

Well, the hair is finally letting go....hung in there for a good while.  That's neither here nor there though, the main thing is that my blood counts showed a little spark yesterday - the white count poked up from "zero" to about 500, including neutrophils from zero to 300.  Dr. Kritz was pleased.  I feel pretty good, still weak from the low counts, mouth  and digestive tract still a little raw but all things considered, very thankful to be where I am.  If my counts continue to recover, I suspect we're looking at round 2 of the chemo (hyper-CVAD) in early November, and the transplant in early-to-mid-December (assuming - praying - that the chemo hammers the lymphoma!).  Your prayers continue to be a great blessing to Renee and I - our best to you.  More soon.....Dan

Saturday, October 15, 2011

Prayer for Today

Morning has Broken
Dear Lord,

Thank you for this beautiful morning, the quiet and peaceful sunrise through the trees, the sounds of birds starting their day...thank you for the ministry of your Spirit in early prayer.  Thank you for my dear wife, who is steadfastly honoring her vows before you to care for me in my sickness; what a blessing she is to me!

Thank you for the teaching of John Piper on the sovereignty of God in suffering - thank you for the profound truths concerning our trials, that they are of great importance in Your work in the world and in my life.  Thank you for the spiritual knowledge that all suffering will be redeemed for your Glory and the promise that we will fully understand all your plans and purposes one day.

Thank you for the Bible, your inspired Word, which documents events such as the life of Job - which has spoken directly to a suffering world, words of Life, words of purpose, words of hope for centuries upon centuries - and how it ministers powerfully to me today.  Thank you for stories such as Peter's denials of the Lord Jesus, which were preceded by Jesus saying to Peter, "Simon, Simon, behold, Satan demanded to have you, that he might sift you like wheat - but I have prayed for you, that your faith may not fail.  And when you have turned again, strengthen your brothers".  Thank you Lord for the way these stories strengthen me today.  How awesome is it to know that Jesus Himself is praying for my faith to be strong!

Lord please protect me today from disease and infection.  Please reveal more of yourself to me, Renee, my family, and all who yearn for you.  Thank you Lord for the outpouring of love, affection, care, prayer, and service of all who have reached out to me in this trial - words cannot express our emotions, how deeply we have been touched by so many people, some of whom we do not even know directly.  Thank you for the fierce love and support of my family who is not here in Raleigh - Mom, Dad, Laure, Jill - but who are praying without ceasing for me and Renee.

Lord there are many who have it tougher than I do - like the little girl we met in the waiting room at the radiology clinic, Sanaya.  Lord we lift up these little ones who have diseases - we pray for their comfort and healing - we pray that they all, like Sanaya, would have special knowledge of You and a special closeness to You - the blessed assurance that You love them and hold them in the palm of Your hand.

Lord we acknowledge Your supremacy in all things, that you are the ultimate end and desire of our hearts.  We worship You today and lift Your name in praise!  Amen.

Wednesday, October 12, 2011

Hey, It's Good to be Back Home Again.........

Rachel and I diving on Bloody Bay Wall at Little Cayman Island, 2010
Some of you may recognize that as a John Denver lyric...highly appropriate today.  Yesterday Renee and I traveled back from Houston and arrived home at about 1:30 pm.  Renee's parents plus Rachel and Kenyon were here to welcome us home to a spotless and highly disinfected house - carpets, upholstery, dog beds, everything....Rachel and Kenyon made an Italian vegetable/noodle/chick pea soup last night for dinner that was just the ticket for me.  I am truly blessed, and yesterday in particular by seeing R&K work together touchingly on a service project for their ol' dad.

The chemo effects have been manageable so far;  I have been taking anti-nausea medication every 8 hours and so far have not been ill.  Weak, yes.  I saw Dr. Kritz today and he seemed to think that I was out of the worst part of the nausea, which would be great.  I've eaten well today, including two additional helpings of Rachel's and Kenyon's hearty soup.  Just wanted to do a quick post to let you know that I am home and under the best care in the world (Renee).  It will be several weeks before we have a definitive answer on how the lymphoma is responding, but as I think I mentioned before, the respiratory symptoms having improved is a good early indication.  I will be vulnerable to infection as my blood counts drop over the next many days - if you would join us in praying that I stay infection-free (and therefore out of the hospital), we would be grateful.  

More His love - Dan

Saturday, October 8, 2011

Positive Signs!!

Getting Rigged up for a Day on the River - 9-07-11

Dear friends and family, today is Saturday and I have a very good report for you.  First, the chemotherapy is going well; I have not had much discomfort so far, no nausea (though they tell me that's coming :-(    I've had  no complications to this point and the docs, apparently optimistic that I will skate through the rest of this, have already processed my discharge papers for Monday morning.  The nurses joke with me as I walk laps on the floor - 'who you here to see?', i.e., I look more like a visitor than a patient - praise God.

Even better though, all the symptoms of my pneumonia - fever, cough, restricted deep breathing, sore throat - have all dramatically improved in the last 48 hours.  Because of the interplay between my lymphoma - the main tumor is blocking the bronchial tube that leads to the lobe of my lung where the pneumonia is - the docs said that the first signs that the chemo is working on the lymphoma might be exactly this improvement - so the current view is that the chemo is indeed shrinking the tumor, beginning to allow air into that blocked lobe, and doing it's job.  The rounds doc this morning said that's what he thought, and he said the real question is will it "stay shrinking/shrunk", which we won't know for 3 to 4 more weeks....but we couldn't have asked for more in these 3.5 days.

Renee is doing well, thanks for remembering her in your prayers.  I wanted to share a song by Rich Mullins with you - it's a little melancholy, but it expresses a deep longing that I am sure many people feel when they are in a scary spot - it has ministered to me for many years......and has been particularly meaningful during these most recent times.  Rich Mullins has been a cornerstone of Renee's and my spiritual music collection for 18 years.  I hope you enjoy it.

God's grace and peace to you.  Dan and Renee

Wednesday, October 5, 2011

hyperCVAD Begins

Folks, after Dr. Keating and Dr. Hosing (transplant doctor) conferred today, they decided that the best course is to proceed with hyperCVAD, thus hitting the lymphoma head-on and going for full or partial remission within 2 treatments.  There is EBV present in my blood, as there is in most people's blood, and they may yet pursue a post-transplant procedure that will kill the EBV, which would enhance my recovery and reduce/eliminate the potential for EBV to cause mischief in the future.

So, the plan is back to what it was over the weekend, ie, 2 rounds of chemo and then transplant.  If the treatments go as planned, the transplant would take place in December.  There are a few dependencies, including but not limited to:

-  lymphoma responds to hyperCVAD treatment (tumor shrinks or disappears)
-  pneumonia/fevers are cleared up
-  chemo side effects, including low blood counts, are managed

If the above dependencies are met, we can proceed to transplant with 50% confidence in being cured - woo-hoo!!  We thank the Lord for His provision, His loving care, His plan for our salvation and His plan for our eternal life with Him.  We declare our complete trust in Him to oversee every detail of this process, to guide the minds and hands of the doctors, to walk with me, Renee, Rachel and Kenyon every step of the way, to carry me when I cannot walk, and to comfort and strengthen us through the coming challenges.  Each of you has a part to play in God's plan - your prayers and encouragement are more precious than gold to us...please keep them coming. This is all for His glory.

I'm reading the bible daily using a reading plan called "M'Cheyne" part of my assignment was this passage from 2nd Corinthians chapter 3 (verses 16-18):  "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but what is unseen.  For what is seen is temporary, but what is unseen is eternal."

This present treatment will run through Sunday and our plan is to return to Raleigh on Monday.  With much love - Dan and Renee

Monday, October 3, 2011

Keating calls an Audible

OK so for you non-football fans, an "audible" is when the quarterback changes the play that was called in the huddle at the line of scrimmage - he shouts out code words left and right to his lined-up teammates to take advantage of something he sees in the defensive alignment or to counteract a defensive play such as a blitz. 

When we spoke with Alice this morning, she was prepping us for hyperCVAD - when we would start, when we would finish, when my hair would fall out, etc........and Dr. Keating came in and sat down in front of me and said "I lie awake at night thinking about how to cure people like you - people your age - because I have children your age - and I think to myself, 'if this was my son, how would I treat him?' "...... with that touching preamble, Dr. Keating said that he wanted to find out if I am carrying the Epstein-Barr virus (EBV) because recent research has shown that this virus shows up a lot in "Richter's" patients;  they think that it's the virus that is often driving the lymphoma - If I have it and if it is driving the lymphoma, then curing the EBV may be all the treatment that is required for the lymphoma......

So basically, Dr. Keating asked us to "chill" for two days while he runs this to ground.  If I don't have EBV, I think we're back to hyperCVAD, starting Wednesday.  If I do have it, the treatment will be very different and much less (if at all) toxic to my immune system, and in fact, directed at the virus, not the lymphoma.

So - hyperCVAD is on hold for at least 48 hours while Dr. Keating investigates this thread.  Chill we will, trusting the Lord in everything.

Thanks as always for your faithful friendship and prayer support.......Dan and Renee

Saturday, October 1, 2011

Back to Houston

Renee and sister Karen with Renee's 50th birthday present (the waterfall)Sept 28
It's Saturday morning.  Yesterday we learned that the mystery lung mass is indeed a lymphoma, confirmed by MD Anderson's pathology lab.  Right away, I will say that we have been battling a little "Israelite syndrome" this week, where a week ago we were rejoicing and praising God in the highest because He delivered me from lung cancer - lymphoma was a blessing - think of the Israelites being delivered from Pharaoh when He parted the Red Sea - and within a few days, we were praying fervently that the mass would NOT be lymphoma - think of the Israelites saying to God "have you delivered us from Pharoah's armies only to have us starve in this desert?"

So what we are focusing on is that lymphoma is still better than lung cancer, remembering that God showed Himself loving and powerful and He remains in control of my life and all these medical twists and turns.  The medical details are that my CLL has undergone a "Richter's transformation", i.e. some CLL cells mutated into a B-cell lymphoma.  It is a well documented complication of CLL and it is aggressive but treatable - mine does not appear to have spread much at this point.  Dr.s Kritz and Keating conferred yesterday and the "win strategy" (to borrow a term from IBM sales) is to give me two rounds of a chemo treatment called hyperCVAD, and if that is effective on the lymphoma, move to transplant and go for the cure.  The hyperCVAD is a fairly harsh treatment - I will lose my hair and feel pretty ill for a week to 10 days.  I believe they will know during or soon after the 1st treatment if the lymphoma is responding.

Dr. Keating wants me in Houston for the 1st round of treatment so Renee and I will fly tomorrow to Houston and hopefully the treatment will start Monday.  The tentative plan is to try to get home next Saturday and hunker down here for the worst of the side effects.  Because of the potential side effects of the treatment, hospitalization is required so I will be checking into the MD Anderson hospital on Monday.  If the 1st round goes well I may get the 2nd round here locally (still would have to be hospitalized).

The outpouring of love, care, prayers, cards, and concerns have touched Renee and I in ways you cannot imagine.  Please feel free to share my blog with your circle of friends - I want to share the message of God's ministry in my life with as many people as possible.  My daughter, a talented writer and artist, did a beautiful pastel of an eagle for me for one of my birthdays - it hangs in my office with the caption:

"And in the shelter of Thy wings I will take refuge, until destruction passes by." - Psalm 57:1

God is our refuge, our strong tower - He will give us the strength and grace we need to see this through.  In Him we have supreme and ultimate confidence.  May He bless you this week.