I reported out on social media last week that I received a good checkup with from my oncologist last Friday. While that is a very true statement, let me take a minute to elaborate exactly what “good” means. I walk out of his office at the conclusion of any appointment with an agreed upon understanding of my status and my path forward. But a lot of dialogue takes place with my doc during that visit. It’s not merely a blood stick and a “see you next time”.
Technically, my white count was a little high by “normal” standards; however my numbers were in line with MY relative “normal”. A normal WBC is typically between 5,000 – 10,000 white blood cells per microliter. (That standard will deviate slightly by source but they are all close). On Friday, mine was about 26,000. While that may appear alarming, it’s really not, given that all other counts and disease markers were in check.
I am however experiencing a few symptoms that are connected with the disease. The good news is that these are relatively minor in nature and more of a discomfort and annoyance than anything else. These symptoms are an indication that the disease is present, but not present enough to warrant any kind of chemotherapy or monoclonal antibody therapy treatment.
Without oversharing, I will explain a little about some of these symptoms because there is no doubt some of my patient buddies will dial right into this level of detail. My biggest issues relate to the number of lymph nodes that remain fairly enlarged. Nodes around my neck, groin, armpit, tonsils, and chest area are enlarged. Some of these itch, some hurt, some make swallowing a little more difficult at times. One is pulling on a nerve and tendon in my arm that leads to tingling and numbness, and other nodes just look big and don’t bother me at all.
No matter how I physically feel leading up to these appointments, the few days prior are always a little stressful because I just never know what the lab work may indicate. Dr. Shore reminds me that I put too much stock in those numbers and is good at helping me dial the expectation back and reset that normal bar. Vitals are taken, and blood samples are first drawn by the nurse. With the lab on the premises, my blood results are at my doctor’s fingertips the minute he steps into the room. So my doctor and I always go through our standing question, answer, and dialogue as he first enters the exam room.
We talk through my blood counts, we talk through my current list of issues and concerns, we have very healthy and therapeutic discussion around treatments that are in the development and approval pipelines and how bright the future looks for chronic lymphocytic leukemia patients with drugs like Ibrutinib and Treanda. On Friday we also talked about some of the things that we could do to try to wrestle down my enlarged lymph nodes. We always have good dialogue but ultimately Dr. Shore ends up putting the control back in my hands and asks, “so what do you want to do”? I often struggle with that question. In reality, I know that he knows what he wants to do. But he wants the path forward to be collaborative and mutually agreed upon, and I respect that. He has an effective way of guiding me in the direction he thinks is best for me, without dictating what he thinks needs to be done.
What I also appreciate about my relationship with my doc is that during every appointment he asks how my racing and training has been going. He fully gets my lifestyle and what’s important to me and does what he can to support this where he can. It’s important to him if I’ve noticed any changes in my training or racing efforts that may possibly have disease implications. And if so, that would have an impact on potential treatment options.
In this appointment, we agreed upon an additional round of a steroid taper (No, not anabolic). It’s an option that has been effective in the past, and one that I handle well, except for a little loss of sleep during the first couple of nights. That decision didn’t come without even more dialogue around the long term use of steroids as a treatment option. But we landed in a good and healthy place. I walked out feeling emotionally healthy and “in check”. I also walked out feeling like I had the green light to resume full bore training these last couple of months before Ironman Maryland.
In true Dr. Shore fashion, as we wrapped up our visit, he asked “so when do you want to come back?” I barely got out an audible “uhhhhhh…, ummmmm…” when he quickly replied with “OK, I’ll see you in two months”.
So there you have a brief recap of last week’s “good checkup”!
The Thing About Derek
Many of you have been following the journey of Derek Fitzgerald. Derek is a Philadelphia area cancer survivor and a heart transplant recipient who has turned obstacle into opportunity, and limitation into victory.
I first met Derek 4 years ago through The Leukemia & Lymphoma Society’s Team in Training program where as a survivor living with chronic leukemia, I get much joy in coaching their triathlon program. Derek had been training for his first half marathon and we were connected at the race expo in Philly. His enthusiasm impressed me. And as he talked about his future goals in the endurance sports world, his dreams impressed me as well. I would quickly learn that Derek’s dreams were not dreams at all. They were calculated and well thought out plans.
As a guy who has raced over a dozen ironman triathlons and at that time 24 marathons, those kind of accomplishments don’t typically impress me very easily. But Derek impressed me. I think it was the pure joy and excitement that he radiated having been given a third chance in life.
Derek’s race resume continued to grow from century rides, to marathons, and ultimately to the ironman. I had the pleasure of coaching Derek when he again came through our Team in Training’s triathlon program. And we’ve had the opportunity to work together or support one another on a number of initiatives in the blood cancer community.
Most recently, Derek was given the golden opportunity to represent Team in Training at the Ironman World Championship in Kona. Derek represented and did so with pride. He represented TNT. He represented Penn Medicine. He represented himself. He represented his amazingly supportive family. And most importantly, he represented the one person who has made it all possible. A person he will never know, but one Derek has made it his mission to honor – his donor.
So the thing about Derek is that he has accomplished all this with a quiet and unassuming sense of humility and appreciation. Derek has given a face and yes, a beating heart, to the word miracle. He marches on to his meet his next challenge while thanking those around him who have gotten him this far.
And he does this not for accolades. He does this because he feels it’s what he needs to do. He does this because he wants people to understand that in life, all things are possible.
In life, miracle can happen. They happened to Derek Fitzgerald.