Post Vacation Check In

Greetings!!

Don’t take my lack of posting as a bad thing. I was actually on vacation last week and tried to unplug a little bit. I had a great week with just the right balance of all things good. I’m generally feeling good since my initial round of chemo. Some days have been better than others and at times I still feel a little fatigued but all in all I am feeling pretty good. And I need to feel good because we start all over again with round two next Monday, August 15th.

The challenge is that both the disease and the treatment can cause not only fatigue but shortness of breath as well. Obviously the shortness of breath as a result of the treatment will eventually dissipate. But in the meantime I feel a little like a concert pianist playing while wearing mittens. The good news is that this is intermittent and not too severe.

tuckahoe2I felt good enough over vacation to jump into a sprint duathlon about three miles from our house. It wasn’t pretty, but it felt great emotionally to race. And as luck would have it, my age group was pretty small so by default a ended up with a 3rd place age group finish. I like the idea of racing sprint races shortly after chemo so I will continue with that practice over the remaining cycles, when I’m feeling up to it. It helps me psychologically to remain involved and doing what I love to do. (Hopefully you’re taking notes on that point.)

So it’s back to “normal” this week and then as I mentioned, back in for round two on 8/15. Much more to come!

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Cancer Warrior Episode

I recently sat down with Mel Majoros of The Cancer Warrior blog fame and talked about relapsing, treatment, racing, and the cancer warrior mentality. Give it a listen HERE.

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LLS, TNT, & SSB

I feel like this recent relapse and treatment has further strengthened my relationship with Team in Training and The Leukemia & Lymphoma Society. I don’t know if strengthened is the right word, perhaps validated is or fortified. Whatever the word is… it all feels even more connected. I’ve been symptomatic all year to varying degrees. This required me to cycle off and on steroids over several months, monitor blood levels far more often than I like, and consider a potential treatment path forward when the time became right. TNT and LLS was in my corner every step of the way.

All the while, I kept up with my own racing and training but more importantly continued to coach the triathlon group for Team in Training. I had another very memorable event with Team at the TriRock Philly triathlon and was able to celebrate the finishes and victories with some awesome people. Once TriRock Philly was over, it was time to dig in and get to the root of the solution to my ever present symptoms.

Add in to the mix the many cool things I was able to do with or for LLS again this year such as speaking and being a part of a couple of Man & Woman of the Year events and emceeing the TriRock Inspirational Dinner in June. I also had a handful of media opportunities to talk about LLS, TNT, my own personal story, and how wonderful it is that all of those pieces fit so nicely together. I’ve met many fellow survivors and their families and with each passing day, that network; OUR network gets stronger. I’ve been able to promote LLS and TNT as amazing organizations that I stand not behind, but in front of 200%

And now I have a new opportunity. Now the coach, mentor, volunteer, spokesperson, poster boy has once again become the patient. Or the active patient. I guess I’m always the patient as long as my condition is chronic. It’s an opportunity to take everything I’ve learned in 10 years as a patient and 10 years as a TNT coach and apply it. It’s an opportunity to learn more about me and about the new drugs I’m being treated with and it’s an opportunity to gain even greater insight and empathy about the physical and emotional impacts of disease and treatment on both the patient and the supporter and take them forward to help others.

I’m wiser than I was 10 years ago when I was first diagnosed. 10 years ago my treatment felt more like a Frazer vs Ali championship bout. I’m more strategic this time around. The relationship between my doctor and I has matured. 10 years ago I was scared and clueless. Today, he and I have meaningful conversations and I feel that he values my input as much as I value his. He knows I’m an informed patient and he knows that nobody knows my body the way I do. That makes for very healthy dialogue.

Drugs are smarter too, and there is a great arsenal of weapons to choose from. I’m still going to beat the dripping snot  out of this thing, but my mindset is slightly different. More controlled, more mature, more methodical, more confident, and at the end of the day, more definitive.

As many of you know, one round of treatment is down and I have 3 more to go. So far, so good. Check that. So far, great. I’m on the right path to healing.  I’m seeing results with minimal (and manageable) side effects. I am again thankful that I have treatment options – good options. And I’m optimistic about the many more options that are in various stages of development, approval, and release. Leading the way in so many of these options is the Leukemia & Lymphoma Society. The future looks bright because someday really is today. Thanks for all you do LLS.

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2016 WEGO Health Activists Awards

WEGO is excited to announce the start of the Fifth Annual WEGO Health Activist Awards – a program to recognize all of the important people in your online healthy community.

Nominate someone now!

wego It is no secret Health Activists work tirelessly, endlessly informing and inspiring so many within their health community. Unfortunately, most of the time these leaders go without receiving recognition or thanks. The WEGO Health team has created the Awards program as an opportunity to give a big “Thank you” to your favorite health activist. The program helps you-and others like you- give back to those who are making a difference in your community!

Do you follow someone on Twitter that manages to announce the latest research for your condition in 180 characters or less?

Do you have a blog that inspires you to lead an exciting life despite your condition’s challenges?

Take this opportunity to recognize the leaders and creators of these online platforms and let them know how much they are making a difference in your life!

We’ll be accepting nominations through September 9th and hope you’ll take a few minutes to give back to the people who help you every day. You can do so here.

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What a Difference a Run Makes

I can happily say that my mood shifted 180 degrees from yesterday. If you read yesterday’s post, that’s a good thing.  Since one of my treatment drugs (Bendeka) is new to me, I’m still learning what my typical rate of physical and emotional rebound will be. I’m one week post (round 1) treatment and feel really good today. I’m not sure how much of that can be attributed to the lifecycle of the drug reactions or the decent (short) run that I had last night.

Yes, last night it was 95 degrees and humid as hell but the only thing I felt on the run was the fact that it was 95 and humid. I certainly didn’t break any records but I ran consistently and I did NOT feel any of the symptoms I had been experiencing. It may have just been a good day or I may have rounded a corner. I don’t know which and I don’t care. Both are positive steps and either reason should be celebrated. This is great momentum to build upon.

Sometimes I liken multiple rounds of chemotherapy to building sand castles. You work diligently to create something very cool looking then sit back and admire it while a wave washes it away. You have choices at that point but the only sensible one is to rebuild your castle. It’s part of the process. And you get really good at building sand castles.

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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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