Checking In and Checking Up with CLL

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”!

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  1. Posted July 28, 2015 at | Permalink

    Steve, thanks for sharing your personal story. You continue to inspire me to keep up the HEADstrong fight!!!

  2. David Wolovitz
    Posted July 28, 2015 at | Permalink

    Thanks for the update and sharing the inner workings of an oncology appointment. So many of your feelings are universal and help normalize other patients emotions. Wishing you the best. David and Lainie

  3. KC
    Posted July 28, 2015 at | Permalink

    Continue to keep your “WOLVERINE Attitude” present everyday, my MAN!
    peace + blessings + Go FORDS!

  4. Posted July 28, 2015 at | Permalink

    Good checkup is a good thing but your good is still pretty tough.


  5. Posted July 28, 2015 at | Permalink

    Attitude, attitude, attitude. You have a good one. Keep it good. Use the numbers for the science of your body, the road for the depth of your soul.


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