I ran across this recently and wanted to share:
"Before I had cancer, I knew I was going to die, I just didn't know when. After I was diagnosed with cancer, I knew I was going to die, I just didn't know when."
Before my diagnosis last June, I was fully acquainted and comfortable with the idea of "we aren't guaranteed any time and we could die any day." After my diagnosis, I realized that my understanding of that was purely conceptual. That is, I knew it, intellectually, but I did not have a visceral understanding of it.
My understanding is deeper now, and all I can say is: in the midst of your normal every day life, the one that hypnotizes and numbs you with its familiarity and struggles, try to find a moment to really FEEL the truth of your vulnerability and impermanence. It might scare you to consider it, but if you can let the fear go, the true sweetness of being alive will be your reward. - Posted on Facebook, 1/24/16
I have mentioned before the trade-off one makes when writing about experiences within, or close to, the moment of their occurrence, versus writing about them later. The upside of writing about them in retrospect is the meaning that one can add to the narrative of the experience, due to further reflection.
But there would appear to be a diminishing return. That is, at some point, many of the interesting insights and nuances that one could provide by writing about an event after thoughtful reflection can also get lost in the continual forward movement of more and more Life.
Eventually, the subtleties get overwhelmed by more events, and more processing, until the language of (or the interest in) the previous insights dissolve in to an faint shadow of their former selves.
I fear that seems to be the case here; that my negligence in waiting this long to write reduces the potential for meaningful insight and instead becomes more of a mechanical recitation of facts.
And yet, I feel it is important to cover at least some small amount of all of the ground traversed in the last two months before moving on to current events.
I could list a number of reasons for why it has been eight to nine weeks since I last posted, but if I had to be honest with myself, I believe I could sum it up in one word: restlessness.
The interesting thing about this restlessness is that both surgeons, Dr. Ong in Seattle and Dr. Foster in Omaha, told me that the primary symptom I would experience post-surgery would be fatigue. In reality, it was the opposite.
I was restless. Restless on the verge of anxiousness.
It is possible that if I had been able to do my normal workouts, I might have actually experienced the fatigue they were talking about. But as it was, there were zero moments during the day when I felt like I had to lie down or take a nap. In fact, more often than not, I headed out the door for more walks. And while I did spend large chunks of time on the computer, I couldn't cultivate the mental stillness I needed to write.
It is a shame, really, because there are a number of things worth mentioning that I will distill in to a few words for now but that I would have expounded on in greater detail at the time they happened. But seeing as how there is no way to go back and do it over, I will just proceed forward.
My last appointment with Dr. Foster was on Friday, December 18th. He was pleased with how everything was looking and he removed my last drain tube, even though it was putting out more peritoneal sweat than he would have liked. At some point you just hope the body re-absorbs it, he said, but then went on to describe what I should look out for in case the fluid started to accumulate in my abdomen.
My biggest concern was that this could happen while I was back in Seattle, and while I could obviously seek out doctors there, my medical support system was in Omaha.
The moment I woke up the next morning, I knew something was off. Before I even opened my eyes I noticed that my last few dreamy moments were really negative. Definitely not normal for me. And the instant I sat up I felt an uneasy tension in my breathing.
As the morning went on, it was clear that something was stirring. I was feeling anxious. And emotional.
It was not uncommon for me to walk continuously throughout my parent's house, as that is how I did my daily walking during my recovery. But that morning, I was pacing. And I could tell. I also kept putting food in my mouth even though I wasn't hungry.
All tale-tell signs, of something, but I didn't know what to do about it. I am always sensitive to anything that feels like it restricts my breathing, but there was more going on; more that I could not identify. We were leaving to go back to Seattle that day, and while I was excited to get back, I was not very psyched about what I was experiencing. I was just doing what I could to hold everything together.
But that strategy would not work as well on the plane.
If you know my personality, it would not be difficult to guess that I am not the type to be prone to anxiety, but "anxiety" is the only way I can explain what I felt on the plane ride home. It was bad.
Everything felt restricting. I had to take my binder off, and I was constantly tugging on my clothing anywhere it seemed even the slightest bit tight, which felt like pretty much everywhere. I got so warm that I started sweating.
Every ten or fifteen minutes I would catch my spinning thoughts and think "Dude, c'mon...this is all in your head. You can pull it together." And occasionally, I would succeed. I would start to feel calm, and I would cool off to the point of having to wrap my jacket around myself. And all would be good until the cycle started over again.
Needless to say, it was not a short three hour flight, and I was very happy to get off the plane. Our friends picked us up from the airport, and I felt pretty normal for the rest of the night.
In reflecting back, it is possible that all of these feelings didn't start on the last day in Omaha. I think there was always an underlying "restlessness" that I felt, but I was always able to distract myself and shake it off. For some odd reason, this restlessness feeling seemed to increase right before I ate and right before I went to bed.
Being back in Seattle wasn't easy at first, because Rose flew out of town the very next morning for a photo shoot in Los Angeles. We both agreed that this was the right thing for her to do, but it did leave me at home on my own.
Normally, being the introvert that I am, I love those days of just hanging out by myself. But these were not normal days nor normal circumstances.
So, I walked. A lot. Outside and inside. On the first day that that I hit eight miles walking (according to my iPhone app) I am pretty certain that almost half of those miles came from walking inside the house. I would walk a figure eight pattern between two open rooms or just walk around from room to room.
Walking was the only real activity I was allowed to do, so I did a lot of it.
I also experienced a certain amount of vulnerability when I was walking around outside. It was difficult to explain to people, but when I wrote about it on Facebook a number of women commented that they felt the same way when they were out in public while 8-9 months pregnant, or while walking around with their infant. It is a question of "what am I capable of if something comes up or goes wrong?"
The irony of this feeling, of course, is that even in my current state I was probably stronger and fitter than many of the people who were also out walking around. We evaluate situations based on our own baselines more than how our situation compares to others. It provided me with some interesting insight in to how we perceive our "diminished self," whether it be from injury, medical issue, or age/frailty.
The pre-bed restlessness seemed to increase when I was alone, so I would turn on the TV and watch it until it was much later than my normal bed time. Basically, I would create a situation of exhaustion. Despite this pre-bed restlessness, I never had problems falling asleep once I actually lied down and closed my eyes.
Within a week or two, things started to normalize a bit. I joined a gym that was about a mile and a half away. I walked there every day, did a few light weight exercises, and then did some easy cardio on the treadmill or the stepmill. Eventually, I was able to ramp my cardio up to an intensity that allowed me to sweat and breathe hard. Not only did this do wonders for my soul (sweat salvation), but it helped relieve some of the pent-up restlessness.
I have thought a lot about the origins of that restlessness. I am guessing it was the product of a number of things. While one could say that being able to be physically active again allowed me to "burn off" all of that excess energy, one could also argue that that same physical activity allowed me to cover up and ignore a deeper restlessness. I don't really know for sure which one is more true. I am still processing it all, and I imagine the answer will lie somewhere in the middle.
In all of my years as a "healthy person," I was always very aware of people who were currently dealing with, or had previously dealt with, serious medical issues. My father had a heart valve surgery when he was seventeen years old, and my mother had breast cancer twice, so even in my own immediate family there were plenty of reminders.
I also worked in a level one trauma center for three and a half years. So between my personal experiences, and everything I saw at work, I had more than enough data to be aware of what misfortunes were possible in life, to be compassionate and empathetic towards those dealing with medical or traumatic issues, and to be grateful for my own good health.
But never once did I feel GUILTY about being in good health.
How interesting, then, that it was only after I had this rare cancer, and a seemingly successful surgery and recovery, that I harbored my first feelings of guilt. Similar to when soldiers come home from the war, knowing that some of their buddies didn't make it, or like when people survive accidents when others died, I experienced my first sensation of guilt just weeks after my surgery.
I had friends who were going through very unpleasant cancer surgeries and IV chemo, and I saw people posting not so great things on the Facebook PMP page. It was not lost on me that my surgery had gone well and that my recovery was speeding along. I couldn't help but feel a slight pang of "survivors guilt."
I have been spending some time thinking about this feeling of guilt; wondering what lies at the root of it all. Is there an underlying belief of personal unworthiness? Is it a function of one's world view; ideas about fairness or lack of fairness? Or, might it just be based in fear, confronting what could still be the real possibility that things could still turn in a bad way?
While I am a hypnotherapist, and I love learning about how we create and form beliefs, I haven't spent much time thinking about survivor's guilt, per se. But having now dipped my toe in to the stream, and felt it first-hand, I am fascinated by it. Of equal interest to me is what my own attitude and outlook has played in all of this, if any. In other words, what do we and don't we have the ability to affect? I imagine that this will be high up on my list of things to research this year.
At the end of the day, my recovery is going well. I go to the gym 5 to 7 days a week. I am increasing the intensity and the volume of my cardio workouts and I am slowly starting to increase my strength training. I fear I am only going to be able to do something like two pull-ups (when I finally try), but, it is all a journey, I suppose. :) I have also been able to run, outside, twice. I huge step forward for me.
I have mentioned a number of times throughout this blog that I thought my breathing issue was unrelated to my medical issue. I still believe that to be the case, as I continue to experience the same issue that I experienced prior to my surgery. It is possible that the bulky mass of the mucinous tumors were restricting my diaphragm before, and now it is restricted by swelling or post-surgery adhesions. But intuitively, I keep thinking that somehow, in some way, this restriction I am sensing is related to the position of my spine.
What do I mean by that? I'm not sure, exactly. Only that I think I can find a way to resolve the issue by concentrating on position and posture. I am open to the fact that there could be a psychological/emotional aspect at play as well. I have certainly heard enough stories to not rule anything like that out. But for the time being, the focus is my back.
There are many things that are being left out of this post, but at some point, you have to just cut it off and start anew. That is how I am feeling internally...in how I look at my life, and at life in general...so I am applying it to my blog as well.
Not every experience or lesson needs to be shared. In some ways, having this post hang over my head for the last two months has been holding me back, in the sense that I have been trying to keep the ideas and concepts alive long enough to share. The most important thing is that I have integrated the insights and learning in to my own life along the way. The "me" of today is different than the me of eight weeks ago (or even the me of eight days ago).
My focus now is on what my focus has always been on; moving forward. I have not been one to cling on to the past, and there is certainly no reason to start that now.