Matt Confirmed and I finish St. Anthony's....

Well, of course, Matt was confirmed and I finished St. A's in his honor. When times got tough...I thought about his struggle to regain his strength and even pulled on the memory of my late Dad who told me, "Never give up!"

I finished the entire event in 3 hrs and 41 mins despite some mistakes along the way...and was elated that I made it through the choppy swim [the elites complained!] in 43 mins and didn't see any SHARKS along the way[!], cycled my way around St. Petersburg in 1 hr 33 mins, and despite walking the first two miles of the 10K run along with lots of folks [90 degree heat!], I finished the run strong in 1 hr 15 mins! When I crossed the finish line and they put the medal around my neck [everyone got one] I burst into tears because I felt SO GOOD and realized that what I did was really easy compared to what Matt has already endured and what he still has to face. Thank YOU all for believing in MIRACLES!

TODAY, he had his every-three month SPINAL TAP at MCV Medical Center. Now, we wait to make sure that all is well and that the leukemia has not returned. I'll keep you posted.

MEANWHILE, some incredibly wonderful things are going on in Matt's life and he is not letting anything get in the way!

Today, I got this message from his Mom, Debbie: Hi Susan - we are actually at MCV right now and his spinal tap is done. He is getting an ImmunoGlobulin transfusion right now which takes about 4 hours. His "Battle of the Brains " Collegiate team qualified 4th out of about 50 teams in the semi-finals which is pretty good since the seniors are gone and it is the sophomores taking their place. Matt is flying out with the Collegiate team Friday morning to Chicago for the National tournament and returning Monday. We got a new addition to the Weber family Sunday. Matt is so excited. He has been wanting a dog forever. He started talking about it again Sunday and Dennis told him to look in the paper and there was an ad for Bischons in Richmond. Matt named him Luke after his confirmation name.

So, MIRACLES DO COME TRUE...but not without a price.
Pray for Matt and for all folks who get blood cancer!

CONFIRMATION and PORT-A-CATH....

CONFIRMATION... and “PORT-A-CATH”...those are my terms of the week. Here I am, trained and as ready as I am going to be only FOUR DAYS until my race...and all I can think of is CONFIRMATION and “PORT-A-CATH.” It’s also two of the only things that Matt and his family are thinking about right now.

In FOUR DAYS...on Sunday, April 27 while I am doing the triathlon, Matt will be making his CONFIRMATION. This is a time of great joy in the life of a Christian, an occasion of mature commitment, when young people baptized as infants put their "personal signature" on their parents' decision and knowingly claim their Christian identity.

A “PORT-A-CATH” is a device used to make the administration of chemotherapy into the venous system easier and works to reduce the risk of certain chemotherapy-related complications. A thin, soft, hollow plastic tube/catheter is tunnelled under the skin of your chest. The tip of the catheter lies in a small reservoir connected to a large vein just above your heart and the other end connects with the port which is about about the size of a quarter and is placed under the skin, in the upper part of the chest in the space between your collarbone and nipple.

Some chemotherapy drugs—the kind that Matt has to receive every week—can cause major problems if they leak from the veins into the surrounding tissues causing painful burning and destruction of skin and tissue. Such damage could be very dangerous and difficult to treat. This may happen if certain drugs are administered into a vein in the arm. Without it, doctors very often run out of usable veins. Matt must receive chemotherapy every WEEK.

MATT'S "PORT-A-CATH" HAS FAILED...is no longer working!

Now, just when everything has been going so well, a decision has to be made and, neither decision is an easy one. Matt must either have the surgery to remove and replace the existing “Port-A-Cath” – probably causing him considerable pain and discomfort –- while the new wound and surrounding chest tissues heal.

Or, he could risk having the chemotherapy administered into his arms facing all of the inherent problems associated with that decision...which are many and not insignificant!

And, if he has the surgery....when should he have it???? Before school ends...he can’t carry his backpack till the new “Port-A Cath” heals??? Or after...risking at least two chemo administrations before that occurs??? This is no way to greet the end of school and the summer break! No matter which decision is made, his summer will not be what it should be! Not only will he have to deal with the discomfort and any limitations caused by this turn of events, he will be reminded again that he has leukemia and that his battle is not yet over to eliminate its threat.

But, he WILL have this summer...and with the blessings of God granted to him on his Confirmation Day...many more.

In FOUR DAYS – Sunday, April 27, 2008, I will SWIM, BIKE and RUN in honor of Matt. He will be my inspiration...as he has been all these months of training...as I struggle to finish this exhausting event.

I will be thinking of Matt and his family... knowing for certain that my doing this triathlon for him and YOUR generous donations to THE LEUKEMIA & LYMPHOMA SOCIETY will someday help save other children's summers...and provide hope for the rest of their lives.

HAPPY CONFIRMATION, MATT!

FOUR WEEKS TO GO.....

St. A's is exactly FOUR WEEKS from TODAY!!! This is a view of the course map...ohmigosh! [BLUE=SWIM, ORANGE=BIKE and BROWN=RUN]

It's almost here...where did the weeks go? Tonight's swim training was tough...drills, drills and more drills! My "favorite"...swimming 50 yards freestyle...oh, yeah...but you can only breathe every FIVE strokes! I thought I was going to have a stroke! Your lungs burn like nothing you can imagine while you are doing it and then...it's over and you catch your breath during your 15 second "rest"...that's what our coach calls it!

Saturday is a huge bike clinic where they are going to teach us how to pick up something from the road while riding [if I drop it...it'll stay there], how to maneuver your bike in a straight line even when looking back [like I really want to see where I came from] or even better yet...how to put your hands on another rider’s shoulder while looking back [now WHY would I even think about doing that???]...oh well, I guess I have a lot to learn! Seriously, they will be teaching us some really useful skills that day...how to ride on open roads and in a paceline of 8-12 riders.

Some folks have been asking me if I am running anymore since all they hear about is the swimming and cycling! Well, duh...I love to run! But, since I know that I can easily run 6.2 miles...I'm not focused on the last leg of the triathlon. But, I ought to since my guesstimate is that I will be about 2-1/2 to 3 hours into the race by that time and starting to feel the strain of the day. At some point I know my brain will start to say, "Suck it up...FINISH...SURVIVE! You can do this!"

And, that is when I will think of Matt and his struggle just a little over a year ago when he was in the midst of his treatments and working hard to get to the next level. He will be my inspiration as I look down at the orange bracelet he gave me: STRENGTH - HOPE - FAITH - COURAGE! Time doesn't fly by when you have cancer...but now with every passing day he gets stronger...and those days retreat further into memory. "FINISH...SURVIVE! You WILL do this!"

100 METER DASH....He's back!

This time it's ALL about MATT! You see, while I have been training for this event to honor him, he has been training hard, too, practicing with his buddies again as a member of Collegiate's Track Team.

This is "MIRACLE" MATT...running the 100m dash for Collegiate School on Wednesday, March 19...racing towards the finish line!

A milestone in his recovery! A personal triumph for the brave young man who never gives up! This is what your donation to the LEUKEMIA & LYMPHOMA SOCIETY can do...make MIRACLES happen! GO MATT!!!

BRICK WORKOUT....hit me already!

This has been a contemplative week for me. First of all, it is the end of Lent and as a Christian I am in “Holy Week” mode...anticipating the joy of Easter...attending services and thinking about the sacrifice our Lord made for us. Second, I have a little over FIVE WEEKS to go until St. Anthony’s. The reality of what I am attempting to accomplish in honor of Matt is really setting in. OMIGOSH! Training has been going well...I’m at it SIX DAYS A WEEK...rain or shine, heat or cold...and to be honest, I am pleased with my progress. I can now swim 80 lengths [1.13 miles] without stopping, can manage to pump my way through nearly 30-mile cycling sessions and, of course, I can run 8 miles without any issues. These distances are more than I need to complete St. A’s.

There are, however, some looming concerns. I still haven’t done a “BRICK WORKOUT” where you put one or more of these elements together. I haven’t practiced doing “transitions” where you learn to move swiftly from one event to another...a crucial skill that can make or break your day. And, even though I have done them before...there is always the unknown element of the scary, open-water swim in deep water. Mine will be in Tampa Bay’s [shark-filled] waters, depicted here! Will the water be cold? Will it be choppy and rough with unrelenting currents that will sap my strength??? While I can train and do everything in my power to be ready, there is so much I can’t control.

I think of parallels to Matt and his family. When he was diagnosed with leukemia, he and his parents were told exactly what treatment regimen would be required to try to beat it. There were crises along the way...new things to learn, how to cope. And then, there was the UNKNOWN...things they encountered or couldn’t control. Today, as a result of LLS research, doctors have an arsenal of drugs and therapies that successfully fight back leukemia and other cancers.

I pray that Matt’s dangerous seas are behind him...that the course ahead will be smooth. I await the day when Matt can shout out for all to hear, “I won!” In my mind he already has...but to insure his survival...and for any other folks who might still be swimming in deep waters...struggling to move forward, I will continue to raise funds for cancer research...and push on, too.

STRENGTH - HOPE - FAITH - COURAGE

I had just gotten home from doing a 7-mile run down at Pony Pasture along the James River when Matt and his Mom called to ask if they could stop by..."Matt has something for you for when you are training and something for when you are not training." I didn't know what to think. When they arrived, he told me that he had been fighting the "creeping crud" that has been afflicting a lot of us and had to have a transfusion to "boost his immune system." He missed some school last week, too! He looked great, but a bit tired, nonetheless.

When Matt was diagnosed, his parents Dennis and Debbie had bracelets made that simply state: STRENGTH - HOPE - FAITH - COURAGE. Today, Matt presented me with one of those bracelets...and another one he had made especially for me...beautiful topaz, crystal and silver beads...with a heart toggle and a silver cancer ribbon...and in the center his name - MATT - in silver blocks.

And then...he told me something that made my heart leap..."I'm back training with the TRACK TEAM at school! I'm hoping to run the 100 meter dash and, maybe, the 4 X 100 relay for Collegiate this season!"

Now, hours later...I am looking at my wrist...with my two very precious bracelets...my new treasures...from a strong, hopeful, faithful and courageous young man. I am humbled beyond words...

I THINK I CAN....

TWO incredible back-to-back training sessions over the last two nights! Tuesday evening I did my longest NON-STOP swim so far for this event - 74 [25 yd] lengths = 1.0+ mile!!! And, tonight I [easily] cycled 25 miles [took 1 hour 43 minutes] on the stationary bike at the gym! Then, I "ran" to my car in the parking lot! Okay, it didn't really count as a run...LOL..but I couldn!t resist throwing that in! I am finally beginning to feel like the LITTLE TRAIN THAT COULD! Guess, in some way, this is how Matt must have felt last year...slow but steady wins the race! I will keep pushing on...for Matt!

36F NEVER FELT BETTER....

Had a GREAT 8-mile training run today...it was a "toasty" 36 degrees...which I really love! Thinking of Matt...he had a rough time with chemo last week...and was a bit down! I still find it hard to believe that he has to have a chemo treatment EVERY WEEK for the next two years! What a brave young man he is! My eyes are good...vision is almost 20/20 again!

THE GREATEST BIRTHDAY GIFT....

My 54th birthday was yesterday! My best friend, Fran, came up from Florida...we've been friends since we were FOUR years old! She's run marathons and raised funds for TEAM IN TRAINING, too! This is us back at Walt Disney World in 1999!!! How lucky I am to have her in my life...how lucky I am to be alive! My paternal grandmother, Josephine, died from lymphoma 44 years ago when she was only 51 years old! I often wonder if current treatments...had they been available then...would have saved her life. I guess I will never know.

Four MINUTES....I CAN'T QUIT NOW!

Pitiful!!! Just pitiful! You should have seen me riding early this morning at West Creek...18 miles in an infuriating wind that burst into gusts the weather folks said was about 25 or so mph at that time of day! A couple of times I was almost blown over! With the strong tailwind behind me I was clicking along doing 18 - 25 mph....with the headwind against me there were times I was only doing 6 mph! At one point I had my own “pity party” and told myself that I had bitten off more than I could chew doing this race. With my 54th birthday looming on 2/15...I starting thinking that maybe I’m getting too old for this...training is soooo hard sometimes! But, then in the next moment I remembered that about this time last year Matt’s biggest achievement was that he walked FOUR MINUTES on the treadmill. There is no way I could face him now and tell him, “I can’t do this.” I just have to work harder...like he did every day to recover to where he is now. I love you, Matt, and your indomitable spirit...you have no idea how much YOU inspire me! Bless you always! (P.S. My eyes are improving with every day...hooray!)

BLINK....BLINK...I have it easy!

Eyes are better a bit! Doctor says the corneal swelling is going down...yippee! You don’t have to worry about me on the road now! If you use a pc all day long like I do...BLINK and stop staring at the monitor all day! And, if you wear contacts...BLINK MORE OFTEN and take five minute breaks every hour throughout the day and use lubricating eye drops! It’s annoying to interrupt your work during the day...but doesn't compare to the interruption of daily life the chemotherapy injections will cause Matt EVERY SINGLE WEEK for the next two YEARS! Who am I to complain? Will ride 20 miles on a stationary bike tonight...realizing how very easy I have it.

WHO'S VIEW IS IT?

So far my training has been coming along just fine. However, since last October, I have been bothered by sometimes debilitating double and blurred vision. I have had “every test known to man” after an initial eye exam showed nothing too out of the ordinary. I continued to wear my contact lenses and had neurological exams, MRI, blood work-up, etc. Everything negative...but vision continued to worsen. Last Friday, I hit a “speed bump”...actually a major corneal speed bump known as a massive stigmatism which covers my entire left cornea which has now rendered me [temporarily we hope] just a few levels above “legally blind” so I can continue to drive. I am a writer and reading is very difficult, but I can still work....wearing two pair of glasses and using a magnifying glass! What a funny sight I am!!! Contacts are out of the question! Now on anti-inflammatory eyes drops and artificial tears. Everything is difficult...but, if all goes well and I am a candidate, surgery will occur on both eyes in a few weeks and I will see clearly again!!! It got me thinking...CANCER patients begin their scary journey with the hope that light will be seen at the end of the tunnel. I think of Matt every day...here I am worried about my temporary loss of clear sight...it’s really minor compared to what he bravely faces in his ongoing recovery. So, tonight I’ll swim...I can see the black line on the pool floor!!! Saturday, I run...life goes on...I won’t stop! GO TEAM!!!

Miracle Matt

“Matt Weber is smiling. And why wouldn’t he be? He’s back at Collegiate, full time, every day, attending class, hanging with friends, doing the stuff a normal 15-year old high school kid takes for granted.

Last year, though, life wasn’t quite so simple. You see, he spent his freshman winter and spring shuttling between home and the VCU Medical Center waging a concerted battle with a fearsome disease called T-cell acute lymphoblastic leukemia.”

So began the article written by Collegiate teacher and coach, Weldon Bradshaw, on September 11, 2007 about a very special young man I have known since he was 8-years old and the almost-constant playmate of my son, Graham.

When I got word that Matt had been diagnosed on November 15, 2006 with the very disease I have for so many years raised funds for in an effort to find the cure for, it was as if it had happened to my own son and I was devastated. The fact that it came just one month after my own Dad's death from mantle-cell lymphoma...made my heart break just a little bit more.

A parent should never, ever have to hear the words, “Your child has cancer.” Yet, that is just what Matt’s Mom and Dad heard. I dream of a day when no parent...or anyone we love...will ever have to endure the pain of those words.