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.