Battle Cry at the Park – It’s a Very Real Thing

I wanted to elaborate a little more on my cancer treatment hill climb and battle cry that you may have seen this week. There is definitely a meaningful history to that and I’m very happy that it’s grown into even more. The venue is the Veterans Memorial Park on Lawrence Road in Marple Township.  The park is beautiful and is dedicated to United States War Vets. When my dad (a WWII US Army Vet) passed away in 2005, we got him a bench there and a plaque with his name on it. It is a peaceful place to sit, walk, or run and I feel my dad in that park.

When I was first diagnosed in 2006, Mary Grace and I really didn’t know what to do with ourselves upon receiving the news. After a few minutes of sifting through the fog of confusion, fear, and uncertainty, we decided to go visit my father. We thought he would be the guiding light we needed to comfort us in our time of worry. He did and he was. Mary Grace and I talked and walked around the park, asking dad to give us strength and courage. In time, we eventually felt a calming presence come over us. We didn’t have the answers, and we were scared. But we realized that we were only fearing the unknown, which should be nothing to fear. We knew what we needed to do and we knew we were ready to do it.

It was at that point that I sprinted to the top of that hill and let out a shriek from the bottom of my toes. It was my battle cry. It was our battle cry.

We’ve all visited that park many times over the years. It remains a place we can call “home” when we want to ground ourselves and when I want to be closer to my dad. I’ve had many talks with him there. There have been subsequent battle cries with subsequent treatments. When Comcast Sportsnet did a feature story on me, there was only one logical place to shoot the story – at the park.

So this new treatment journey will be no different. I will visit dad and the park on my treatment days. After chemo this past Tuesday, MG and I again visited and began with a little walk around the trail. The walk is a good time to think and reflect. Within a minute I turned to her and said, “You know I have to run, right?” “Yep, I sure do” was her response. So I took off and ran a couple of perimeters of the park while MG walked. As I passed her on my 2nd lap, I said “Meet me at the bottom of the hill”. We met at the bottom of a small hill near the kid’s playground and I commenced my run to the top and let out my signature battle cry. I felt great.

As MG walked another lap, I quietly stretched and collected my thoughts and gave thanks to the many people and blessings that have become such a vital part of my healing process. Things feel connected there. Between my dad’s bench, our own personal history with the park, and the fact that the Crozer Keystone Regional Cancer Center is a half mile away, this park is our place to find strength and solace.

I have cancer, it doesn’t have me.

And I live above it, not simply with it.

The next Battle Cry run will likely be on the 2nd day of the next round of treatment (8/16). Feel free to come join us to both remember a friend or loved one lost and let out a battle cry for those fighting the good fight.

Until next time.

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Tuckahoe Sprint Duathlon

So, here’s the thing. I registered for the Tuckahoe (NJ) Sprint Duathlon long before we jumped into the chemotherapy pool and luxury spa. My hope is that I should still be able to pull this off. The race is next week, 7/31, and is a few short miles from our house in Marmora NJ. It’s a local and low key fun little sprint that is too close to home to pass up. The challenge is that I “technically” won’t have the green light to run until 7/29. Which is fine for race day clearance, but it doesn’t allow for any kind of tune up training runs. Technically. So, I’ll need to get creative with that one way or another.

The delay in allowing me to run is solely based on the incision recovery of my surgically inserted chest port and not necessarily a product of the treatment itself. That’s a good thing because it means with my subsequent treatments, I will be “allowed” to run much sooner post treatment. So, I’m considering Tuckahoe a GO. I can get in a couple of rides between now and then and I’ll figure the run out. It’s the kind of race that I just need to do mentally, no matter how well I do it physically.

Stay tuned.

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Neulasta Boost

Yesterday’s Neulasta booster shot went off without a hitch. If you are just joining our program, Neulasta is an injection given after a round of chemo to inject good, healthy, infection fighting white cells back into your system. This was given yesterday after receiving chemo on Monday and Tuesday of this week. One of the common side effects from Neulasta is joint & bone pain as this stuff stimulates healthy production activity from within your bone marrow.

Somehow, somewhere, some genius discovered that taking the allergy medication Clariton before and after the Neulasta injection, significantly reduces those side effects. While I don’t understand that, I don’t have to. My team recommended it, and they were spot on. Today I feel little more than a slight heavy leg or tired leg sensation and I’m sure that will quickly run its course. I’ve got no pain at all.

I’m back at work today and trying to reclaim some sense of normalcy. It appears to be working although I’m starting to fade a little. But all things considered, I’m still feeling great. I’m having some crazy dreams at night though and have been a little restless but able to sleep and no other significant side effects to speak of except for a passing mild wave of nausea that leaves as quickly as it comes.

OK, enough of this cancer stuff for now!

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Seemingly Innocuous and Viciously Toxic

It’s very strange to sit in a relaxing chemo recliner and watch bags of crystal clear and seemingly innocuous fluid slowly drip into your blood stream which are actually deadly killers. Here I sit the morning after two full rounds of chemo and I’m still feeling good. I did experience a mild bonk last night around dinner time which was probably right around the time my decadron was winding down. Decadron can offer a comforting counter balance to the potential reactions to chemo but can also be its own beast in its own right. I had a little bit if a restless night but feel otherwise GOOD. At noon today I need to get a booster shot of Neulasta which will bolster my now depleted white blood count back to a safe level.

I’m totally fascinated by the chemo drugs that I’m taking and how effective, yet targeted they are. Last night my wife told me that she and my nurse, Mary Agnes were watching a couple of lymph nodes on the back of my neck swell and move around under my skin as they were doing battle with the Rituxan. They whole event almost looked like an alien was being attacked within my body. And in reality, that’s exactly what was happening. I definitely want video of that during our next round!  I can also feel tingling sensations within my body as my lymphatic system is being exposed and reacting to the drugs. Trying to relax and just going with that feeling can be very validating and comforting. You know the drugs are working because you can physically feel it.

I’ve mentioned this before, but I will further clarify. I’m taking two primary drugs – Rituxan and Bendeka. (I originally referenced the drug Treanda, but Bendeka is the newer name for the same drug which is a bendamustine HCI manufactured by Teva Pharmaceuticals). I need to take Rituxan and Bendeka every 28 days for approximately 4 cycles. Rituxan is just given on Monday and is administered much more slowly because of potential side effects if it enters your system too quickly. (Which has happened to me and it’s not fun). Bendeka is given both Monday and Tuesday and is a much shorter infusion. But with both of those drugs comes a smorgasbord of other drugs that need to be taken orally or intravenously to offset any possible reactions. I won’t bore you with those.

So I’m off now until 8/15 and 8/16 when we will commence round 2. My hope and plan is to recover and rebuild pretty quickly and be able to race the Tuckahoe Duathlon on 7/31. I should be good. But before I get any raised eyebrows, I totally understand that racing comes secondary to my health. I never have and never will compromise my recovery for any racing and training. I will however do everything I can to remain active and in motion as often as I safely can be. And when racing, training, chemo, recovery, and remission can all play together nicely in the same sandbox, it is an incredibly rewarding experience. I also have Diamondman Half Ironman, Philadelphia Half Marathon, and the NYC Marathon remaining this year that I hope to successfully keep on the calendar. Philly and NYC should be after all treatments are completely done. But we’ll see how things go and especially how my blood counts respond so I don’t compromise anything.

I’ll leave you with this thought of the day. When my doc was referring to these drugs as being “the big guns”, he followed it up with “When I’ve treated people with this combination, I haven’t needed to treat them again for …… well…. actually….. I’ve never had to treat anyone again after treating them with this combination.”

Thanks for your support.

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2016 Chemo Round 1, Day 2

Round one is a wrap! I just finished up my second treatment day of the first round of chemo without any issues. We used the same precautionary cocktails as yesterday followed by a healthy dose of  Bendeka (Treanda). I have to say that I am really amazed at how good I felt coming out of these first two days of treatment. I felt so good today that Mary Grace and I grabbed some lunch after chemo and then I went for a brief run at the Veterans Memorial Park which is only about a half mile from the Crozer Keystone Cancer Center in Broomall PA. I felt strong, I felt in control, and I felt very healthy.

Tomorrow I need to get a booster shot of Neulasta to bring my white blood count back to reality because they took a pretty serious hit yesterday and today. I then follow up with my doc on Monday just to assess the impacts and results of round one. Round two will be on 8/15 and 8/16. I feel really good and optimistic to resume some good training once I receive my Neulasta booster tomorrow.

I guess that’s it for now. I will continue to provide updates as I have them. Thanks for your support.

FC Battle Cry – click for the famous FC Battle Cry! This hill climb and battle cry has become an important part of the cancer fight.

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2016 Chemo Round 1, Day 1

Today was the first day of two which will be repeated over 4 – 28 day cycles in the coming months. In a word, today was long (6.5 hours), but I successfully tolerated my drugs, Rituxan and Treanda.

imageDespite pre treatment cocktails consisting of Zofran, Benedryl, and Decadron, I did experience a few side effects (mild nausea, hot flashes) but these were easily controlled. This round was filled with a number of firsts. For starters, I never received chemo via a port inserted in my chest. This port was just inserted last Friday.  Also the treatment drug Treanda is new to me. Both of these things made me a little anxious about today so I’m ecstatic that it went as well as it did.  My doc called this combination, “the big guns” and we loaded them with the maximum dosage amount. We’re going full bore on this.

The other first that we experienced was a severe thunderstorm and power outage. Yes, the chemo suite lost power. No worries, the staff made the necessary adjustments and we forged on.

It’s hard to explain this, but I can actually feel the treatment drugs working as I write this. There is a war being waged in my body at this moment and I have a ringside seat. I can feel it in the problem areas where lymph nodes are extremely enlarged. The cool thing is, the drugs are winning the war.

So I receive another round of  Treanda tomorrow, then a booster shot on Wednesday. Then off for 28 days sans a check in with my doc next Monday.

I will still need to watch out for side effects throughout this process, and eventually we will reach a point where my white count, red count, and platelets are too depleted to treat any longer. And that’s when we will know we are done. That will likely and hopefully take 4 cycles.

Today was a great day. Until next time. And thanks for your support. I will continue to provide brief updates here out of respect for your social media news feeds. If you are interested in following my progress, check in here.

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Power Port Ready to Roll

I feel the same way today as I do the day before a big race. Introspective, edgy, nervous, but excited for race day. It seems odd to say that the day before chemo but, so be it. I’m ready to roll. On Friday I had my Power Port inserted on the right side of chest near my clavicle which is ready for its first use tomorrow morning. My day first needs to begin with a 7:00 am PET Scan which requires a 4 hour fast. Ouch. I don’t fast well. I like food.

Power PortFollowing the PET Scan, we will head over to check in with my oncologist and review blood work, CT, and PET Scan results and then head over to the chemo suite for a very long day of infusion. The good thing about Monday is that Tuesday will be a much shorter day. Translation – there ain’t much good about Monday other then the gratification of finally getting this treatment train rolling.

So today is a chill and mental prep day.  I may have to visit my dad’s Memorial Park and do a battle cry lap around the field. Just for good measure.

I guess that’s it for now. More commentary from ring side tomorrow.

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I’ve Been “Called Out”

Remember back in elementary school when you heard someone say “I call you out after school”? This was one kid’s way of threatening another and giving them all day (or longer) to worry about it. It was simply a challenge to a dual and the terms were pretty simple. “I call you out after school… behind the library… at 3 o’clock… tomorrow”.  While I don’t recall ever being seriously “called out” by anyone, everyone knew what that meant.

I say “seriously” because there were a couple of times when I heard those words but the situation was easily diffused before any actual blows were exchanged. I also recall one bully who probably called out 10 people every day and it didn’t take long for people to realize that he was full of himself and you could easily respond with “ok, sure you do” or “nah, you aren’t really calling me out” and he would move on to the next kid.

This post isn’t about fighting behind the library. It’s about my leukemia “calling me out” and waiting for my response. For just about all of 2016 I have experienced some intermittent symptoms that were either not significant enough to warrant treatment, or were easily (but temporarily) halted by a steroid treatment protocol. This cat and mouse chess game has been going on since January. We’ve been closely monitoring all of my symptoms, counts, and markers and up until now things have been generally in line. The last couple of months have been a little challenging though. I feel like the disease has upped its game and turned up the intensity on some of the symptoms in an effort to back me into a corner and force a more aggressive reaction from me. In short, I’m being called out.

So, let the games begin. Next week I start chemo treatment with Treanda and Rituxan. I’m very accustomed to Rituxan but Treanda will be new for me. This isn’t a scary thing. I’m good to go. I’m more concerned about the timing of getting through treatment before some of my longer races in the fall. Or at least timing it so the races fall at the right time of a mid cycle and my counts are OK. And I also have to take into consideration that my oncologist’s office has moved a little further away so my runs home from chemo will be a little longer, and will include one decent climb. You know if those are my primary concerns, then I’m in a good mental place for treatment.

I’m actually looking forward to treatment so I can put these annoying symptoms to rest. The one-two punch of Treanda and Rituxan has received very favorable response rates and great patient and physician feedback. I will surely keep people posted. Stay tuned more to come.

CLL – I’ll meet you behind the library – Monday at 8:30 AM.

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Be Well Philly 2016 Health Hero Contest

GET EXCITED, the search is on for this year’s Be Well Philly 2016 Health Hero presented by Independence Blue Cross and we want YOU to nominate someone in your community or even YOURSELF to have a chance to be named your local health champion! This will be the fifth year that Philadelphia Magazine is back to find Philly’s most passionate health and fitness advocates.

The Health Hero Challenge was created as a way to celebrate individuals that are truly helping others be happier and healthier in Philly. A Health Hero can take on many different roles – he or she may be considered family, a friend, teacher, coach, trainer, mentor, or even nonprofit founder. The goal of this challenge is to find those special individuals who are motivated and passionate about promoting health and wellness in their surrounding communities, those who strive to make a difference in other’s lives. Does this remind you of anyone that you know? If so, please nominate someone today. Nominees are allowed an unlimited amount of submissions so feel free to nominate your local heroes as much as you like. Nominations for the 2016 Be Well Health Hero are open now until July 13th at 11:59 p.m.

The winner will be named the 2016 Health Hero Champion and a $10,000 donation will be made to the charity of his or her choice. This year, three runner-ups will also receive a $2,500 donation each for a charity of their choosing. The winner will be announced and honored at an amazing event in November, where all finalists will be joined by their advocates in an inspirational celebration.

For more information and nominations form visit: http://www.phillymag.com/be-well-philly/healthhero

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Successful TriRock Philly for TNT

Last weekend I had the privilege of watching a couple of dozen of our Team in Training athletes cross the finish line of the 2016 TriRock Philadelphia Triathlon. These guys worked hard all season to prepare for Philly. In total, our team raised $104,000 to aid the Leukemia & Lymphoma Society’s mission to fight blood cancers. I also had the opportunity to emcee their inspiration dinner on Saturday night, which is always a moving experience.

I also feel it’s important to show some love to two other athletes whose races didn’t go exactly according to plan. We had one participant on Saturday and one on Sunday who were forced to end their days early due to various reasons. While the unfortunate “DNF” can be a difficult pill to swallow, it needs to be kept in perspective. First of all… stuff happens. It happens to all of us, all of the time. You weren’t the first to DNF, you won’t be the last. You worked and trained hard to get to race day so not being able to celebrate your finish stings. I get that. But understand that a DNF doesn’t measure your character, commitment, ability, dedication, or mettle in any way. A DNF simply translates to – not THIS day. You own tomorrow. And you will have your way with tomorrow.

You are still very much a part of this community. Be proud of yourself for having the courage to commit and get to the start line. Be proud of yourself for all of the work you put into this season. Be proud of yourself for the impact you have in the blood cancer community. Be proud of yourself because everyone else is proud of you – especially your coaches and we will see you TOMORROW.

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