Rocked the Half Marathon!! Double Century is Up Next!

Hello Friends and Family!  Well this update is overdue but the big news is that the first leg of the Triple Play is successfully completed!  I “ran” the Raleigh Rock and Roll half marathon in 2 hours and 25 minutes.  I was able to run through the halfway point, but somewhere around mile 8 or 9 I found myself walking up some of the hills in downtown Raleigh.  I didn’t make a conscious decision to walk, my body just stopped running and started walking!  All in all, I think I ran about 10 or 11 out of the 13.1.  Not bad, all things considered. 

The inspiration dinner the night before the race was wonderful, and I was fortunate enough to be honored as the top fund raiser for the Team in Training!  All thanks to all of you!!! 

Well now my attention turns to cycling.  It took me a few days to work out the stiffness and soreness from the run, but by Wednesday I was back on my stairmaster, 40 minutes a day.  Today will be my first cycling workout since the Half.  I will be riding today with Rob Allan, a fellow Tour de Cure participant and my team captain.  The Tour is going to be upon me very soon – 3 weeks fro Saturday, so I need to train intensively.  I will keep you posted.  Thanks for all your encouragement and support!  GO TEAM!!  Dan

Approaching the Start

First Post of 2015

Cozumel, January 2015 with Renee, Rachel, and Alex

         
          Wow, friends and family, I'm not sure what to say about a 6-month hiatus from blog posting.  It's not that nothing has happened, and I'm not coming back to the keyboard because there's anything momentous to report.  It's just been too darn long and I have no excuses.  First, on the medical front, since I last posted in September, I've been to MD Anderson for my 3-year check-up, and everything checked out fine again.  Many of you know that, and I hope that those of you who didn't assumed that no news was good news.  I am now coming to the 3 year anniversary of the date when I was first told that I was cancer-free, about 4 months after my transplant.  For Richter's transformation patients, being alive after 3 years is something that only a small minority experience.  I am blessed to be here.  More than that, I am blessed to be a disciple of the Savior, Jesus Christ, whose resurrection we celebrate today.
            I have not been bothered by my Mycobacterium Avium Complex (MAC) which I was diagnosed with last July or August.  I've been training for a half-marathon which is coming up next Sunday (Rock and Roll Raleigh Marathon and half-Marathon), and while I still use the inhaler occasionally, I'm pretty fit for a guy my age.  I've committed to what I am calling the "2015 Triple Play" for my blood cancer fund-raising project this year.  In addition to the Marathon on April 12th, I am planning to ride in a bicycle event called the NC Tour de Cure, which is a 'double century', 100 miles on May 16 and another 100 on May 17th.  Finally, I plan to join another Team in Training (TNT) event in Yosemite National Park on June 13th, and complete a 20 mile day hike.  I'm doing the fund raising for these 3 events combined, so I have one web page and one goal of $30,000.  If you want to donate, the link is http://pages.teamintraining.org/vtnt/Yosemit15/drooker  As always, the donations go directly to the Leukemia and Lymphoma Society, which funds research dedicated to finding a cure for blood cancers.
             So for the last 2 months I have been training to some extent for all 3 events - I have advanced from a 3 mile jog up to a 7 mile run.  I will do one more run before next Sunday's race.  I expect to be able to run at least 10 miles out of the 13 on race day, and I am not hung up on 'performance' as some would like me to be.  I just want to cross the finish line before they pick up all the cones :-).
            I have also been walking the golf course once a week while carrying my bag to keep my 'hiking feet' in some semblance of readiness.  I have used my "Runkeeper" app while I play so I know that the entire course comes out to just under 7 miles, and that's with about 30 pounds of clubs and equipment on my back.
           Finally I have been riding my road bike at least once a week, usually for between 35 and 45 miles.  Once I get past the half marathon I will focus much harder on the cycling.
           27 people have donated to my cause so far, for a total of $14,550.  Every dollar helps, but I want to give an honorable mention to Eddy Tsang, who, for the third time, has donated $10,000 to a TNT event of mine.  I have known Eddy for almost 20 years now and while I can share many of his great qualities with you, his generosity speaks for itself.  Thanks Eddy!
           On April 24th I will be the keynote speaker, giving a survivor's perspective, at the North Carolina LLS Chapter's Annual Blood Cancer Conference.  Details here:    https://www.facebook.com/events/1406636796308021/

            Well, the Triple Play and the Blood Cancer Conference are the "big things" coming up.  Every day is a blessing and the rest of the family is doing well.  I hope and pray that this post finds you well and I look forward to hearing from you via calls, emails, or comments here on my blog - Happy Easter everyone.  Dan

Wild Montana Skies

Wiith Kenyon at Rock Creek Tuesfay 

On the Clark Fork Friday 

Lung Follow-Up

Kenyon and (Joliet) Jake in my hospital room on June 11

Hello, and my apologies for keeping you in suspense for a month and a half, but it has taken a long time to solve the mystery of what caused my lung (choose your favorite word: infiltrate, nodule, mass, granuloma) _________.  I suppose now we can add "infection" to the list of choices, because the infectious disease (ID) docs have determined that that is what caused the mass to form.  By the time it was taken out, it was a bacterial infection surrounded by scar tissue and inflammation.  It took weeks to grow cultures from the tissue samples and identify the culprit - which is mycobacterium avium complex, or MAC.
The quick facts on this bacteria are that it is found everywhere and most of us carry it;  that only immuno-suppressed people like cancer, transplant, and HIV patients develop disease from it;  that it is in the tuberculosis family but is not contagious;  that it attacks the lungs by forming nodules;  that it is not easy to get rid of;  that it is curable in about 70% of patients;  that those who are cured relapse at about a 50% rate;  and that the development of nodules and other symptoms (bronchitis, shortness of breath, etc.) varies a lot from patient to patient.
The treatment is a very lengthy course of a 3-antibiotic combination which I will start soon.  When I say lengthy, think 1 to 1.5 years.  I think Dr. Kritz put the whole thing in perspective very well:  "THIS IS GOOD.  It's not cancer.  It's not tuberculosis or some other contagious disease.  It's not a particularly virulent disease.  And it's curable."
Since my surgery I have returned to my maximum intensity workouts on the Stairmaster and I am up to a 50 mile bike ride, so my health continues to be good despite all this, for which I am grateful to the Lord, from whom all blessings flow.  And you know, whatever our health situation, the Lord holds our futures - tomorrow, next year, eternity - in His hands - yours and mine.  That gives me peace - and not like the peace the world gives.

Fletcher Flyer Inspiration Dinner Speech

Hello, it's been a long time since I spent a Saturday morning at home - I've been either playing golf or cycling each and every Saturday since February.  One of the things I wanted to get done today is to get the video of my speech from the FF Inspiration dinner up on the web and I've done it - here you go:

Some have asked me this question, so as a footnote, when I gave that talk, I knew I had a mass in my lung.  Thanks to Rachel for shooting.  My incisions are healing nicely.  Taking it easy at home for a few days.   Happy Father's Day to HLR III and all the dads out there.  Dan

Post Op Report

Hello everyone, this pic at left is of me and my brother-from-another-mother, Keith McElrath at the Hasentree Member-Guest, taken Saturday.  That day I had a "mystery mass" in my upper right lung.  Today that mass is in a lab and I have about 10% less lung capacity today, but I'll get that capacity back.  The mass is identified as an  infection surrounded by a cocoon of inflammation and scar tissue called a granuloma ...but NOT lymphoma!!  The operation to get the biopsy was more involved than we first thought.  Dr. Chang had to put a breathing tube in my left lung, then collapse the right lung so he could work on it - "wedge out" the infected and inflamed tissue, staple the lung together, and exit the diseased tissue.  He left a tube in my chest cavity - actually in my side - to drain fluid out after the

Kenyon and Buddy Jake mugging with their masks on in my room at Rex

operation.  I am hoping to be discharged from the hospital today.  Of course I have some pain at the two incision sites (one still has the tube in it) but still today is the target for going home.  All in all, we believe by faith that the Lord answered all the prayers of His people, out of His abundance of love and grace.  I simply stand in awe of His work in my life and I want to use these trials to bring Him honor and Glory.  Thanks everyone for your support, prayers, positive thoughts, and note/FB posts, etc…..I'll update when I get home - Dan

Fletcher Flyer Weekend and Upcoming

 ** Don't miss the medical update at the bottom **

Start of the ride - 1,000 cyclists

Greetings friends and family.  Well, Renee and I (and Rachel) had a stupendous weekend in the mountains of western NC.  After 5 months of training, I completed the 100 mile Fletcher Flyer bike ride!!  I went 17 miles further than  I had gone in any previous training ride, and finished strong and sore.  I raised $5,000 for LLS in the process, good enough for 2nd place among the 50+ TNT riders - and my thanks go out again to all those who donated to the cause!

On the Course with the Triad Team

After driving out to Asheville on Saturday, we checked in to our hotel and got ready for the inspiration dinner, a gathering of all the Team in Training (TNT) participants and their families.  I was asked by the TNT staff to give the survivor's perspective and I will have the video up soon if you want to check it out.  It's about 22 minutes in length.

The ride itself traces out a labyrinth of roads that generally criss-cross through beautiful river bottomland and the towns of Brevard, Mills River, Etowah, Horsehoe, and, of course, Fletcher.  The course had a total elevation gain of something like 4,300 feet, but over 100 miles, that's not too heinous.    4 other riders came out from the Raleigh team with me, and on the ride I met a bunch of great TNT folks from Greensboro, Winston Salem, Georgia, and Northern Ohio.  The team spirit and camaraderie were outstanding.  There were 6 rest stops along the way, each equipped with porta-johns, fresh and packaged foods, water and gatorade, a first aid station, and a bike mechanic tent.  Since we were not 'racing', we made good use of the rest areas!

Finishing Strong with David, Wendy, Liz, Beth, Rob, and Singh from the Triad Team

At mile 49, the course passed the gravel road that goes to my sister-in-law Karen's house.  Renee, Rachel, and Karen were out there to cheer us on (link to clip --->  HERE )

After the ride, Renee and I spent Sunday evening with Karen and Scott (Rachel had to motor back to Raleigh to be ready for her first day of work on Monday) at their cozy mountain cabin in Mills River.  Then Monday morning we drove up the beautiful Blue Ridge Parkway to Blowing Rock, NC to spend another lovely evening with Bill and Michelle Joyce at their mountain retreat.  Wonderful views, wonderful friends, fabulous food, and great wine.  A blessed time.  Back to Raleigh on Tuesday to face new challenges.

On the Thursday before Memorial Day, I had my 6-month CT scan.  On the tuesday following, Dr. Kritz called - which is never a good omen, because when the tests are negative he has a staff nurse make the calls - and let me know that the CT showed an anomaly in my right lung.  Since I am not showing any signs of pneumonia, that can be ruled out as an explanation, but there are innumerable viruses and bacteria that can cause infections of different types, some which carry little or no symptoms.  So, it's likely either a lymphoma relapse or an odd infection.  We are going with a surgical biopsy so that there are no mistakes or indeterminate results this time.  We will have a consultation with Dr. Albert Chang tomorrow (June 5) and schedule the biopsy from there.  Dr. Chang is the same doc who performed the operation in September 2011 that ultimately determined that I had lymphoma, not lung cancer.  ---->  Update today, June 9:  after a PET scan this morning, we consulted again with Dr. Chang and will proceed with the biopsy, tentatively schedule for tomorrow, June 10th, pending insurance approval.

As we face another time of uncertainty and stress, we are "battle ready" - we know beyond a shadow of a doubt that the Lord is with us, He is for us, and He has everything under control.  He wants us to trust Him completely with this life and the next, and we do.  Until my next update, we are wishing you God's best….Dan