Funk #9 & All Things Must Pass

I worked out last night. That was a little humbling. The first few minutes were actually pretty demoralizing but I finished the workout on a much more positive and promising note. I felt like the first few minutes were needed to prime the pump and flush out some impurities. Here’s hoping I can keep that momentum throughout the next two weeks so I can rebuild prior to round two of treatment.

I woke up in a funk today. Or let’s just say I woke up a little off. A little annoyed. A little bummed. A little pissed off. I trust these feelings will pass. I’ll chalk them up to “benefits” of chemo and everything that goes along with it. It makes me wonder what the emotional roller coaster will be like in the next couple of month. As long as I can stay a step ahead physically, I’ll be able to reconcile my own head. If I can’t, I’ll be concerned.

Without cheating, does anyone know who wrote the songs referenced in the title of this post?

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Round 1 Post Treatment Blood Check

I had my post treatment check in this morning with my oncolodoc. Things are moving in the right direction. My WBC is coming down and the rest of my counts are still at overall safe levels. We know those will dip in the coming months but today they are good. Many lymph nodes are starting to show signs of reduction in size as well. That process will take a little time given the slow moving nature of the disease but like I said, we are definitely moving in the right direction.  If I were to assess my status at this point, I would say I am progressing nicely and showing good signs or improvement after round 1.

All in all, I would say that I had a good week last week as well. I had waves of nausea and mild flu like symptoms but they came and went pretty quickly. I wrestled a little bit of fatigue but the post treatment fatigue was better than the fatigue I felt prior to treatment. So I actually felt “better”. I still have my long cascading and raging mane of hair so that’s good. OK so maybe hair loss has never been a concern for me. But I don’t think my buzzed head is any different today than prior to treatment. I was still somewhat sidelined last week because of my chest port incisions but I felt like I could have worked out and definitely felt the desire to work out. I’m trusting in the expertise of those who are smarter than I.

I mentioned having had some downward waves last week but the cool thing is that they were offset by some really awesome positive ones. That’s an odd concept as toxins are working their magic in my system but I kept thinking of the analogy of being internally bleached. I’m littered with lymphocytic waste but the drugs are bleaching me clean and I honestly get waves of feeling bleachy clean. When I think about how enlarged my lymph nodes were/are and how much they were effecting me, the thought of a good bleaching is a welcomed one.

I forget if I shared this or not. While I was on the table having my port inserted I was chatting with the team doing the procedure. (I was technically mildly sedated but I couldn’t tell that I was). They were repeating my vital signs and blood counts amongst themselves and when they got to my white count, I heard one of the nurses say, “wait, hold on, what did you say his WBC was?” The doc and I both chimed in and said that my WBC spike was a product of the disease and likely not a sign of infection. As the doc was concluding the procedure and stitching me up he said something that was a real eye opener. We were talking about CLL, white blood counts, and lymph node enlargement and he piped in with this: “oh I could see how big the lymph nodes are when I was inside. In fact, I had to navigate around some of them to place your port”. That was just further validation that although the return of my symptoms had been very gradual over possibly a few years, they have reached a point where they are impacting me so the decision to treat was the right one.

So the good news is that I have the green light to start working out. I’ll be able to rebuild during these next two weeks before beginning round two of treatment in August. That’s a beautiful thing. That also means that I can race the Tuckahoe Sprint Duathlon next Sunday. It may not be a pretty performance but I can promise you it sure will be a redeeming one.

FC

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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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