Waiting for the news...

This past Friday I found out that my cancer is back…or actually that it was never gone, but had gone undetected until now.  Needless to say, not good news at all…Going into my surgery in early May, I knew that 10-15% of people receive an “NED” signal (No Evidence of Disease) from the sentinel lymph node biopsy which ends up being false…and I am in that group. 

I found out by luck.  Right now I have a large bump on my neck which is basically a ball of fluid called seroma.  Seroma is common after a large variety of surgeries and will usually go away by itself after a few weeks.  Mine was bothersome so I went in to get it drained to speed up the process.  They weren’t able to drain it, but they did get some liquid out of it and since they had it, decided to test it as a matter of procedure.  It came back positive for cancer cells. 

In early July Jamie and I went to Alaska with all the kids to serve at a camp up there for kids and teens.  They asked me to give a talk the last night about my experience with cancer, and knowing that River would be listening in, I found some time to take him out for a walk.  We were sitting on a huge old growth log, looking across the water at a glacier perched halfway up an 8000’ mountain.  Before our eyes the glacier was slowly dying as a 1000’ foot waterfall of melt cascaded down the cliffs and towards the sea.  On that log I told him more details about my cancer…but was able to do so from the comfortable position that it was likely all off my body… 

Telling River the more recent news has been more disruptive for him.  The other kids are still too naïve to understand the implications, but they are not lost on River.  I can no longer go into a room where he is and not receive a long hug.  He was the one who stated the possibility that I might die.  It takes great courage for a kid not to be told that, but to realize and state it on his own.

Yesterday I had a PT scan to see if they can determine how far the cancer has spread.  I should know the preliminary results before the weekend, but the treatment plan will likely still be up in the air.  Right now there are some amazing immune system treatments in clinical trials that are taking people who were previously without hope and helping a great number of them.  It seems that we are on the verge of major breakthroughs in how melanoma and other cancers are treated, and I’m hopeful that if mine progresses slowly enough that I’ll be able to take advantage of them!  The current treatments don’t excite me too much, but I must admit that there is a lot more for me to learn about them.

As you can imagine the news has been disruptive for all of us.  You’re perhaps in that group for whom it is disruptive.  Cancer doesn’t happen to individuals, it happens to families, friends, co-workers, clients, etc.  In that sense, my disease is not my own but is being carried by many, and I'm very grateful that I'm not alone in this.

Hearing the news has made the last number of days quite the whirlwind.  On one hand, it has taken Jamie and I right back to the place where we are uber-present to each other and our kids, savoring each ray of sun, each meal with friends, each moment with each other.  It has also been very surreal.  To face the reality that I have cancer, that statistics say that most likely I will die from this cancer—these are strange waters.  It is difficult to have the gravity of the meaning fully land—to be emotionally attached to the implications.   I think that until I know more about the status of the disease and how far it has spread, I’m not going to let myself really go there all the way. 

I don’t feel any fear.  My biggest concern isn’t for myself but rather for Jamie and the kids.  If I die, she will be the one left to deal with the challenges I will leave.  I don't feel anger.  People live and die all the time and there is nothing that seems unfair that it is happening to me.

People have commented that they don’t know what to say, that they are at a loss for words.  Let me just say that this is OK, one needn’t say anything, simply being with me is enough.  Words of solidarity or words that describe how you’re feeling, like “I’m with you, you're not alone” or “I’m pulling for you,” or “my heart is breaking with you,” or even “I feel awkward and don’t know what to say.”  All of these are wonderful ways of being present to one’s own feelings and to me. 

What is unhelpful for me is being instructed on how I should be, think or feel.  Advice like, “Stay positive,” or “remember the power of positive thinking” are not welcome words.  That isn’t encouragement to me, it rather feels like someone is telling me how I need to react to make them feel more comfortable with the situation.  Personally, I’m comfortable being blue at times.  I feel comfortable facing reality head on without resorting into naïve optimism (or falling into pessimistic fatalism/depression).  The reality is that I could live 90 years, but most likely I’ll die in the next five.  I see no need to ignore either possibility, and will continue to hold both.  I’m sick of being told to stay positive.  I think it comes from people’s own fear of death and view that somehow death is the worst thing and must be avoided at all costs.  To me there are many things worse than death, including existing in denial or naiveté. 

This isn’t to say I’m not grateful for positive people.  My father-in-law Burch is the most positive person I’ve ever known, but he also can be serious and doesn’t dismiss the gravity of the situation.  He is hopeful, but doesn’t somehow disregard the likelihood of hope being obliterated.

 I guess I believe in being hopeful, but not necessarily positive.  The former feels like having a posture of a faithful openness and desire to be fully alive, but not demanding that it play out my way.  The later seems to come from a clinging to life on earth, holding on for dear life to each breath, and refusing to welcome or even consider the alternative.

I have more to say on all of this, but for now my kids are calling…  I will update when I can…