When setting out on any new adventure, part of the fun is not knowing what you will find around the next corner. Will it be a postcard picture perfect breathtaking cliff top vista? Or will it be just another turn on an otherwise twisty and ongoing road? Will the people you meet be kind and welcoming along the way? Or will they make you want to pick up and move on?
TV shows like “Route 66” and “Star Trek” come to mind when contemplating this. In the former, two guys drive a really cool corvette to some new destination along the fabled U.S. Route 66 in the early 1960s. In the latter, the Enterprise transports the captain and crew to a new planet in some far away star system. In both, our intrepid travelers meet the locals and have some sort of adventure that inexplicably plays out over 60 minutes (actually it is 48 to 53 minutes when accounting for commercials). Ultimately, every storyline ties together with some sort of thoughtful parable. Our travelers then move on to the next locale, repeat, and it’s all good. Unfortunately in real life, it generally is not so neatly packaged.
So it was with my first try at being a patient blogger. Normally, I am very private about health and personal matters, and am even less open about broadcasting these through social media. I guess my perspective is that everybody deals with challenging things on a daily basis, and they really don’t need my burdens. Consequently, this whole blogger thing is way, way outside my experience and comfort zone.
Additionally, and despite having done a lot of public speaking and writing, there always is a nagging internal doubt that what I am discussing will be accepted or benefit those who read or listen. This nagging doubt was really evident when writing and in the run up to posting the first blog entry.
For example, in the context of very public forum, how would people respond to the idea that there are prejudices and negative misconceptions about having chronic cancer? Would you all think I am nuts for bringing up such a sensitive topic? Would you even look at the blog in the first place? Even if you did, would the content be so banal that there would be a collective shrug? Again, more uncertainties and internalized doubt.
One thing I am learning is that having CLL is in part, one uncertainty after another with some more significant than others. Regrettably, life’s journey with CLL is not a 60 minute TV episode. Having gone through all the twists and turns of accepting CLL as part of my life, there were now even more related to talking about this in a social forum. So, all of my nagging doubts about the blog were, and remain, a perfect metaphor for life in watch in wait.
Given the tremendous response and feedback to the first blog, my neurosis and concerns were clearly unfounded. Around this turn on this part of the adventure, I found openness, richness and poignancy in the life stories people shared in their comments. They were all moving and every single one hit home for me. I read each of them multiple times and although I did not get to all of them, tried to respond to each one. I hope you were equally affected. Perhaps most importantly, I did not feel different.
While I doubt any of us came into this willingly, it seems that we truly are a community nonetheless. I am grateful that Patient Power has created a safe place where we can share our thoughts. Based on the overwhelming initial response, I came away feeling that this blog gave some voice to those of us who are in watch and wait. Again, a big personal goal in doing this blog in the first place is helping people. For me at least, your initial responses are edifying, and I can’t thank all of you enough.
A commonality in most of your responses was how we are all trying to live as normal a life as is reasonably possible albeit with a new, potentially fatal “feature.” This speaks to the duality of life in watch and wait. On the one hand, you are trying to go about your day like most other people. On the other, you are dealing with an incurable cancer. As much as you try to ignore it, it is always in the background and colors daily choices.
As evidenced by many of the comments and at one extreme, we face the challenge of integrating CLL into our relationships. For example, who do we tell and under what circumstance? One poster was dealing with the challenge of telling a new or potential partner that they have cancer. What courage it must take to do that! How do we tell our children? Even though my children are young adults, telling them truly was one of the worst days of my life. Several posters spoke to this as well. Another poster said it took three distinct tries to communicate their cancer fight with family before it felt “right.”
At the other extreme, many people literally seemed to just go about their day. One commenter said they choose not to be the “poster person” for cancer at their place of employment. Another said they didn’t want to play the “cancer card.” Given CLL’s heterogeneity, I guess it should be no surprise that every person deals with watch and wait in an equally diverse way.
On this part of my CLL adventure at least, I am glad that I went around the turn. That unfolding view was warm and welcoming! I hope to be in this locale for longer than a 60-minute TV episode, and not have the residents think I am overstaying my welcome.
Thank you for reading and please send your thoughts and ideas.
Always hope. Never quit.