2016 Chemo Round 3

For those of you keeping score at home…round 3 of chemo concluded today without any issues. My blood counts were good and I continue to both respond and tolerate treatment pretty well.  I haven’t slept yet since yesterday due to the beauty and curse of my favorite (said nobody ever) steroid decadron but sleeping is overrated at times. I’ll get caught up in the next couple of days. I go in for my Neulasta (white cell) booster shot tomorrow but otherwise, that’s a wrap for this month. I hope. Assuming no unforeseen or unmanageable side effects.

I know I can expect a few unpredictable days over the next couple of weeks but that’s OK. It’s par for the course and part of the plan. If the effects of this round are anything like those of the first two rounds (which isn’t a guarantee due to the cumulative effects of the drugs) I should be able to race the HEADstrong 5K this weekend in Ridley Park PA. If you are looking for a great little race benefiting a great cause, and run by one of the most amazing organizations on the planet, come join us. Details HERE.

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What’s New? Glad You Asked

Happy Blood Cancer Awareness month!!

I haven’t posted in a little bit but that doesn’t mean life hasn’t been busy. Let me try to catch you up to speed with some recent news and happenings.

First, as I’ve been actively writing and talking about, I commence with round three of chemo treatment on Monday and Tuesday, September 12th & 13th. As I previously mentioned my doc was very pleased with both my response and ability to tolerate the first two rounds so we are going full speed ahead with a 3rd and a 4th treatment at which point we will again reassess my response.  Chances are that might be all I’ll need (and be able to tolerate).  The protocol for this combination of treatment drugs is actually 4-6 rounds so if I continue to respond well and recover well, a 5th and a 6th is a possibility. But I’m not looking past Monday for now.

This weekend, I was supposed to race the half ironman at the Diamondman Challenge in Delaware produced by Piranha Sports. After giving it some careful consideration, I decided it’s best that I take a scratch on this one. As I’ve been navigating through treatments, and all that goes with them, certain compromises were needed. This was one of them. So, while I am a little disappointed to have to strike an event from my calendar, I know that these compromises are temporary. I’ll still fill the void with something physical and productive. In 30 years of racing and 10 years of managing a chronic cancer, I’ve learned a few lessons in patience, trust, and adaptability. For now, I’ll put this one in the category of “humbled but still relentless”.

I have again been nominated for two WEGO Health awards. WEGO is a network of over 100,000 of the most influential members of the online health community. I’ve been nominated for both a Health Activist Hero award and a Lifetime Achievement award. I’ll keep you posted on what that means but essentially beginning next week, folks will have the opportunity to vote for their favorite nominees in several health care categories. You can learn more HERE.

On October 29th & 30th, I’ll be speaking at Columbia University in NYC at a 2-Day Patient Conference presented by the Cutaneous Lymphoma Foundation in conjunction with the 3rd World Congress of Cutaneous Lymphomas also happening in New York that week. The topic of the talk will simply be “Living Above Chronic Cancer”. Details of that weekend can be found HERE.

And lastly, TNT is crossing the border! Due to popular demand, Team In Training is excited to announce their newest event – Ironman 70.3 Mont-Tremblant – on June 25, 2017 in Québec, Canada. In its short tenure, IRONMAN 70.3 Mont-Tremblant has exceeded expectations with its scenic course and abundance of family-friendly activities. The 1.2-mile swim takes place in Tremblant Lake, followed by a 1-loop, 56-mile bike through Mont-Tremblant’s mountains. Athletes will then embark on the 13.1-mile run course, finishing in the city’s pedestrian village.  I’m looking forward to coaching this crop of TNT athletes. To learn more about Ironman 70.3 Mont-Tremblant or any other exciting TNT event, visit www.teamintraining.org/epa or email Katie.Freind@lls.org.

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It was a Good Day

It was a good day yesterday. It was a really good day. Starting with a great mid-cycle check up with my oncolodoc. Blood levels look good, lymph nodes are retreating, and I am tolerating treatment very well. I wish I could put his reaction in a bottle for future use. He was genuinely  happy and even a little surprised at how well I am responding and reacting. I was ecstatic. Onward and upward as we start to plan for treatment round 3.

dr romanoFrom there it was onto Cabrini University who dedicated a healing mass to me at the request of my friend and former psychology professor Dr. Sicoli. That was an extremely special gesture. Making the day even more special was running into Dr. Joe Romano who was my philosophy professor, and one of my most favorite beings on the planet. I love this man. He’s 82 and still teaching 2 classes a week and going strong.

We capped off the day with an amazing family lunch at The White Dog cafe. It was a GOOD day.

It was great to connect with some old friends. Thank you Cabrini and all who attended. A special thank you to Dr. Sicoli and Sr. Christine for the healing mass in my honor.

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Cancer’s Give and Take

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

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

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

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

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


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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