Cancer’s Give and Take

By Steve | Published: August 22, 2016

Many of you have heard me say in the past that cancer has created more opportunities than it has taken away opened more doors that it has closed. You’ve probably heard me say that and dismissed me as a crazy man with delusional perspectives on life. I won’t deny that crazy claim from time to time, but I do think I’ve got a pretty solid lock on the perspective angle. I tried to articulate a few of the examples of what cancer has given me or reminded me of.

Cancer reminded me how to do things when I’m afraid or uncertain.

It taught me that “today” means something completely different from “anymore”.

It restored my trust and my faith.

Through cancer, I learned what the human body is capable of doing, what it may want to do, and how the mind can influence both.

Cancer has introduced me to some amazing heroes, warriors, medical personnel, support crews, and organizations that showed me just how connected the world really is.

I learned that physical activity is like kryptonite to cancer.

I learned that even if cancer takes a physical life from this planet, it can’t take love. Love stays behind in the world in everything our lost ones touched and everyone they knew.

Cancer showed me that I am much bigger, deeper, and tougher than I ever realized I was.

Cancer taught me how to not swing at the first pitch and to be mindful in my physical and emotional existence.

Cancer taught me to practice patience as a patient.

Cancer reminded of the importance of words like “I love you”, “thank you”, “drive carefully”, and even “goodbye” and how they should be spoken with meaning and conviction.

Cancer showed me that it’s OK to apologize to someone for something stupid you may have done 30 years ago.

And cancer showed me that it’s not too late to thank someone for something they may have taught you 30 years ago.

Cancer reminded me that the guy who cut you off on the road doesn’t matter but the person who held the door for you does.

Cancer reminded me that I am happy, thankful, fortunate, blessed, and appreciative.

I have cancer, it doesn’t have me.

And every day I live above cancer, and not simply with it.

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2016 Chemo Round 2, Day 2

By Steve | Published: August 16, 2016

And BOOM, another round is in the books. I hit the rack pretty early last night after a full day of treatment and believe it or not actually got a little rest. I drifted off and onpole because the steroid decadron had me racing but I quieted myself enough to feel rested. Then bounced up this morning feeling good enough to get in a pre dawn 2 mile scamper. That was just what I needed to set the tone for my 2nd day of treatment.

CKTNT2JoshKatieRemember, Tuesday is my short day and I only sat in chemo for about 2 hours. And I have to tell you that I spent those two hours the best way I possibly could. Not only did I have the company of my wife and one of my daughters, I also got a visit from my good buddy Katie McByrne who is our regional TNT Director as well as TNT alum and fellow blood cancer survivor Josh White. Josh was quite at home at the Crozer Keystone Regional Cancer Center because he is also treated at this same facility. We had a great visit and I really appreciated the love. (And the TNT and LLS goodies). I know Katie was also delivering many positive messages, prayers, and hugs from the extended TNT family, so thank you to all.

We got off to a great start today when my nurse from yesterday, Mary Lou, wheeled my favorite “VIP” IV pole across the floor for me to use. I couldn’t find that pole yesterday and I was a little bummed. Of course my nurse from last month, Mary Agnes,  actually referred to it as the “PIA” pole. But I quickly renamed it to VIP. With my awesome pole, I knew today would be a good day.

So what’s next? First I’ll get a white blood cell booster tomorrow because my whites will soon be in the gutter. And from here on out we will CKTNT1check blood counts often and carefully monitor lymph node movement to determine if and when the next treatment should be. One day at a time for now. But my immune system will be compromised for a little while so don’t be offended if you get air hugs and fist bumps.

In terms of training and activity, I will do what my body tells me I can do. I have every intention of remaining in motion and in racing the handful of races I have left this year. But I also have every intention of doing it right and putting my health first.

Stay tuned!

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2016 Chemo Round 2, Day 1

By Steve | Published: August 15, 2016

Well day 1 of round 2 is in the books. It was another very long day and we needed to pause the treatment at one point for about 25 minutes because I developed an alergic reaction to the Rituxan. This exercise is more the rule than the exception with me but after a brief hiatus and some additional Benedryl, I was able to  resume and conclude the treatment.

imageMy blood counts looked OK at my pre treatment check in with my doc. Since starting treatment, my WBC has gone from 40,000 to 20,000 to now 5,000. Reds and platelets are starting to dip but are still in the safe range. However, once today’s  meds take hold, I will likely plummet so we will keep a close eye on everything and give me red and white boosters when needed as we try to shrink a boatload of lymph nodes.  I had a couple of rough patches today but all in all felt good. I had  the support of my wife, daughter, and sister with me. And our other daughter phoned in her love during treatment as she was stuck at work.

I’m optimistic about the treatments but realistic in knowing that I am going to feel pretty beat up in the next few months. But this is a small price to pay for the long range remission that’s expected from this protocol.

Thanks for everyone’s support,

Until tomorrow.

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Cabrini University Healing Mass

By Steve | Published: August 12, 2016

I have to tell folks about this because this is beyond cool and tugged on my heartstrings like you wouldn’t believe. I’ve spoken often about my Cabrini family which consists of lifelong friends, roommates, teammates, faculty, and staff. I’ve posted many stories about my experiences there and the amazing people I met. Cabrini was a special place which will always be thought of fondly. Yesterday I received a letter from Cabrini’s Director of Campus Ministry informing me that a healing mass had been requested for me by Dr. Candi Sicoli, Ph.D.

Dr. Sicoli was my psychology professor and someone I have remained in contact with through the years. She along with folks like Carter Craigie, Joe Romano, Father Jack McDowell, Jerry Zurek, Jolyon Girard, Gus Nicoletti, and Loup Langton were much more than educators and over the years our relationship has become even more meaningful. While we don’t talk often, every time I connect with one of them I am reminded that I went to an outstanding college filled with incredibly caring people who were and remain interested in their students as individuals as well as contributors to the greater good.

The healing mass is scheduled for Monday August 29th at 12:30 PM in the campus Chapel. Thank you Dr. Sicoli and the entire Cabrini University family.

Here is another fun and meaningful read about my Cabrini family: Descartes, Lennon, and a Priest.

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Whatever Normalcy Is

By Steve | Published: August 11, 2016

I’m gradually realizing that I really don’t like the side effects associated with my treatment meds. Fatigue and shortness of breath with activity are not exactly conducive to supporting a running and multisport lifestyle. I know the effects from the treatment are temporary. And I’m thankful that they are indeed working. This is evidenced by the drastic reduction in size of many of my lymph nodes. But this is all coming with a price that I need to manage through. And today, that price seems expensive.

Yesterday’s “run” was dismal but I plodded through it in an effort to maintain some mobility. I’m keeping the bar low so I don’t disappoint myself. For now, I’ll be happy to move in any run/walk capacity I can. My plan is to talk to my doc on Monday about starting on some prednisone while I am going through treatment. Based on what I know about me, and about prednisone, this will significantly reduce some of the side effects and allow me to maintain some sense of normalcy. Whatever normalcy is.

I need to take progress one day and one treatment at a time because the other anomaly seems to be that my side effects aren’t consistent. Today may be completely different from yesterday which will be different from tomorrow. And before I know it, I’m back in for another round of treatment so all of the reactions and side effects start over. Will this be a pile on effect of new side effects joining forces with the residual? Or will I feel better by Monday’s next round and start fresh with new side effects?  OR might I tolerate this next round a little better because my body will begin to recognize the toxins and adapt where possible? I don’t know the answers to these questions and beyond posting them here, I won’t think about them. We’ll just have to wait and see.

For now, I’m just trying to take care of myself and remain in motion. I’ve convinced that running through, at, and over this is what’s best for me physically and emotionally.

Side note – this tingling and numbness in my hands and fingers is driving me nuts.

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Post Vacation Check In

By Steve | Published: August 8, 2016

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

By Steve | Published: July 29, 2016

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

By Steve | Published: July 28, 2016

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

By Steve | Published: July 28, 2016

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

By Steve | Published: July 27, 2016

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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"Be the change you wish to see in the world " - Gandhi
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