The Cat Rattles his Cage

Living with a chronic disease like chronic lymphocytic leukemia is like living with a caged up wild cat in your basement. You do your best to keep it locked and chained and barricaded away. You live your life with an “out of sight / out of mind” mentality. Intellectually, you need to be aware that you have a huge and sometimes angry cat locked away in a room downstairs, but emotionally, you can’t let it own you. So you work hard at keeping those reminders held at a safe distance. You work hard at doing the right things and address those things requiring attention, and turn blinders to the rest.

On February 24th, 2006 I was first diagnosed with CLL and introduced to this animal. And while I needed to undergo 4 rounds of chemo and 2 years of follow up maintenance chemo,  generally I felt in control, or made every effort to be,  and would walk past that cat’s cage and glance at the lock to check that it’s secure and then move on with my amazing fairy tale of a life. Often times even giving that cat a cocky glance to let him know that I am living my life on my terms in complete control of the mental grip and fear that his existence wants to bring to some people. Sometimes I would hear it snarl a little, or even stand up and pace just to try to let me know he IS still there.  But generally speaking, I walk past, give him a smirk, jiggle the lock, flip him the bird, and move on.

I take pride in how I continue to manage my situation for myself and my loved ones and,  for the sake of others, many of which I may never know. But who I know are out there listening and reading. The strength and support they draw from my is very important and I take that aspect of ‘my gift” very seriously. (There I go calling my leukemia a GIFT again!)

I recently had a situation where my pet man eater decided he wanted to let me know he was awake and restless.

Several weeks ago I was starting to have a few uncomfortable symptoms that very much resembled what I felt when I was first diagnosed close to 7 years ago. So I checked in with my oncologist and did the normal blood workup along with a CT scan. And as suspected, a few CLL symptoms have returned. My blood work was actually ok, but the CT scan showed very pronounced lymph nodes in my neck and in my throat. The good news is that the rest of my CT scan was quite good and clear but we needed to do something about the nodes that were on the move. Initially we tried to treat these symptoms with a low dose steroid to see what may happen.  Which wasn’t  much and came up a little short.

We talked about a number of potential treatment options and next steps. My symptoms are very localized and confined to my neck and throat. While my tonsils and lymph nodes are uncomfortable and very enlarged, and are making swallowing a challenge and even talking a little uncomfortable, the rest of my body is still rather “normal”. So that ruled out a conventional chemo treatment protocol. At this point anyway. The leukemia may be starting to awaken from a relatively quiet and innocuous sleep, but we can (and will) address this early and knock it way back off of the radar again.

So what we have agreed to is an aggressive hard core 4 day round of a high dosage mega steroid. And maybe repeat this in 2 weeks. It’s a relatively standard quasi chemo option in cases like this. The downside is that I need to take a few other things just as an infection preventative with this drug. The real downside is that I don’t sleep on this stuff – at all. Saturday was day one and I was awake most of the night. (Actually I was car shopping online at 3 AM. So perhaps there is a perk out of all of this because I am picking up my new car on Wednesday.)  This is only a 4 day blast so it won’t last too long.

Honestly, this is fine. The bottom line is, I am OK. But in the spirit of full disclosure I have included my family, friends and cancer community contacts along for the ride from the very beginning. This is just another chapter of the story to discuss and hopefully learn from. And I will treat this with the same diligence, determination, and even a little humor that I try to display with all of this. It’s just another opportunity to lead by example. While so much of my cancer journey has been good, there are some less favorable parts along the way that still must be dealt with. And I want people to take my lead in their reactions to all of this. Patients, and supporters alike. We’ll take care of business and lock the cat back up where he belongs.

And again I would like to remind people to not just live WITH their disease or condition, rather, live ABOVE it, and live loudly and proudly above it.That being said, the races and events on my calendar for this year are ABSOLUTELY still on. This little treatment blip should pose no threat to my 2012 goals.

Don’t focus on any (perceived) limitation. Focus on taking action and MOVING.

Hakuna Matata

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19 Comments

  1. Karen Smyers
    Posted May 14, 2012 at 9:18 am | Permalink

    Sorry to hear about the little “blip” on the radar screen. Keep up the great attitude and continue to lead by example. Catch up on some good books in the next 4 days of sleeplessness. I highly recommend Iron War and Unbroken if you haven’t read them yet…

  2. Posted May 14, 2012 at 9:45 am | Permalink

    It’s cancer crushing time! Those damn cells are afraid, very afraid of you my friend!!

  3. Jeff Robbins
    Posted May 14, 2012 at 9:46 am | Permalink

    Steve you are a true inspiration to everyone you are able to touch.

  4. Larry B Berkowitz
    Posted May 14, 2012 at 9:57 am | Permalink

    Thanks for the update. I am not much of a hunter but If I were going on a tiger hunt I would definitely want you on my side. Way to stay focused.

  5. Posted May 14, 2012 at 10:29 am | Permalink

    I know you will put that animal back in its cage. Be well and kick ass.

    Nick Sakiewicz
    CEO & Operating Partner
    Philadelphia Union Soccer

  6. David Wolovitz
    Posted May 14, 2012 at 10:58 am | Permalink

    Thanks for sharing this challenge. We will keep you in out thoughts and prayers while you bite that tiger in the ass! It’s easier to share the good news than to share the problems, but they all deserve our recognition as a reminder of the path we travel. You are THE MAN! He is only the tiger. Give him hell, Steve, give him hell!!!

  7. Posted May 14, 2012 at 12:17 pm | Permalink

    Inspirational mushy response from me…Blah Blah Blah from me… Words words words from me…
    BOTTOM LINE, IS I Want to be JUST LIKE YOU! Steve, You are cut from the stuff warriors are made of! The way you FIGHT this BATTLE is the stuff LEGENDS are made of!!

  8. Lainie Wolovitz
    Posted May 14, 2012 at 1:31 pm | Permalink

    My birthday buddy – your attitude is remarkable. So glad you’re able to keep up with all your good works. That tiger’s got nothing on you. You’re always in our thoughts & prayers.

  9. Posted May 14, 2012 at 4:18 pm | Permalink

    I am sitting on my couch, saw your blog update, and went ahead and read. I first wanted to say I am thinking of you as you work to rid these pesky symptoms/hiccups. I also found your analogy to the cat in the cage to be a great way in which those of us who are not part of the cancer community to slightly understand what is happening. Through my time at LLS I have always really valued those that can “dumb” down all the different facets of blood cancer so I can better understand and at the end of the day do my job better. While I have no idea what it takes to manage CLL, I can certainly grasp that it’s always at your backside thanks to your writing. So a continued thanks for sharing your story. As you know, you are an inspiration.

  10. Dave McCarthy
    Posted May 14, 2012 at 6:24 pm | Permalink

    Your strength and iron clad determination have taken you the last seven years. That cat does not know what is in store for it. Get it back in the cage and flip him another bird.
    Stay strong my friend

  11. Iris Magid
    Posted May 14, 2012 at 9:42 pm | Permalink

    While the context initially brought upon a somber feeling, I am once again in awe of your spirit, strength, and your ability to control your mind. I have every confidence that you will beat this. My thoughts are with you.

    Thank you for sharing your story and reminding me that each person has the ability to control how they react to situations and therefore shaping their own destiny/level of comfort.

  12. Jessica Holland
    Posted May 14, 2012 at 10:26 pm | Permalink

    You may have had cancer… But cancer sure never had you my friend. You remain to be one of the very first survivors I ever heard about post-diagnosis. Just like then… you inspire me with every blog, with every sentence, with every paragraph. Your determination to kick this animal’s ass and courage to remain relentless in being part of the cure is life-altering. This is just another quick stop on your road to change the world.

  13. Steve Brown
    Posted May 15, 2012 at 10:42 pm | Permalink

    OK! So here I am. Four days @ 40 MGs of decadron per day and I feel good. A little tired, a little pissed off, a little anxious, a little hungry, (a lot hungry) BUT the more visible and troublesome symptoms seem to have backed down for now. That’s a good thing. I have a follow up appointment next week to check in again and make the decision on a second round of this stuff. Which to be honest, I will gladly do if it will yield great results with minimal side effects. Plus I just finished up an amazing swim after mustering and hustling every ounce of motivation to get to the pool.
    It’s a good night. Let’s end on that.

  14. Sister Madonna Buder
    Posted May 20, 2012 at 3:49 pm | Permalink

    Steve,

    It was soooo good to see you at St. Anthony’s looking soooo good. Continue to focus,as you are, with your vivid visualization and all will be well!!BLESSINGS! Sister Madonna

  15. Steve
    Posted May 24, 2012 at 8:55 pm | Permalink

    So for those of you who may be following along…..

    Just had a follow up oncologist visit since doing the mega steroid blast. Things look GOOD! Blood work is great and the enlarged lymphatic related organs and nodes are on the retreat. I am past the steroid withdrawal symptoms and all of the crap that goes with that and am feeling otherwise GREAT. (and rested)

    So…….now we get to do the same thing again with another 4 day mega dose of decadron. First day is tomorrow. This should really knock this stuff way down to normal size. We check progress again in 2 weeks. Then we will probably just wait and see how long the symptoms remain tame. The good news is that I am good to race EagleMan, and right now, I am off to swim. AND looking forward to a great weekend at the shore.

    Thanks!

  16. Derek Fitzgerald
    Posted May 24, 2012 at 9:31 pm | Permalink

    Congratulations on your fantastic news, Steve! Couldn’t be happier for you and the family. Enjoy your weekend!

  17. Patti
    Posted May 24, 2012 at 9:46 pm | Permalink

    Steve,
    You are an amazing guy and a true inspiration! Keep up the fight! It was great seeing you on Saturday. Thanks for all you do in honor of a great guy! I will be posting pictures soon!

  18. Gretchen Cooney
    Posted May 25, 2012 at 8:44 am | Permalink

    Way to keep flipping that cat the bird. Good luck this weekend. See you in Cambridge in 2 weeks! Should be a sweat feast – it always is!

  19. Steve
    Posted May 30, 2012 at 8:43 am | Permalink

    Alrighty then …..

    After a few sleepless nights from round two or decadron, and a few more withdrawal symptoms to navigate through and around, I think I am making my way back to reality.I’m in a little bit of a funk but feel pretty good. Finally got good sleep last night. So now we “return to normal” and check in again on June 8th to see what’s next – if anything. This may be all that is needed for now, or we may want another round …. or something…..

    At any rate, I feel good.

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