The Road Ahead

For those of you who read my previous post I must admit to you that I didn't share everything I knew about my condition when I wrote it.  There was a very important piece of information that I decided not to share with the world until I could share it with my children after I was released from the hospital.

"Terminal".  It's such a devastating word.  One I hope you never hear.

I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer".  I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep.  It would be two days before anyone used that word in my presence again.  It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?"  I responded that I had overheard the word cancer and she confirmed it for me.  I asked "Terminal?" and she nodded.

While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer".  We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery).  Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver).  We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.

An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen.  Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line).  But it is not to be.

One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family.  Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter.  I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others.  I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday.  I cried when I listened to it.  It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since.  I talk to my brother in Michigan every week which certainly brightens my day.  But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen.  She is my wife, my home healthcare provider, and my savior at the moment.  She is the strongest person I have ever met.  I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.

With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when.  We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together.  So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible.  They were upset of course, but I've been amazed at how adaptable children are.  We can now talk about it as a family without any hushed tones or raised eyebrows.  It's difficult to know for sure, but I think it was the right choice for us.

As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that.  I am not sure if I will return to work or not (or even whether I will be strong enough to have that option).  I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me.  I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out.  I guess I will just have to wait and see whether returning to work is a real option for me.

My prognosis is really difficult to determine.  All you really have is the statistics, but all patients are individuals and have specific advantages and disadvantages that bias those statistics.  For example, the 5 year survival rate for stage 4 colon cancer is about 6%.  But, was the average patient age in that study 30 or 60?  The average survival of a stage 4 colon cancer patient from diagnosis is just over 2 years.  Am I on the high side or the low side of the bell curve?  Who knows?  Obviously, my PSC is a complicating factor that could have a negative effect on my survival rate.  Then again, chemo may actually help my PSC in addition to slowing/stopping my tumor growth (according to my GI oncologist).  So instead of focusing in on a date, I've decided to focus on living the rest of my life focused on the things that bring me joy in life.  Starting with a 6 year old and a 9 year old who need their daddy.