Lets get the good news out of the way: brain scans are good and clear.
While conversing with my doc about the brain scans we went ahead and asked her a few more pointed questions…and essentially here’s where we’re at.
My time is short. The moment that Jess and I have talked about in theory is now on us where we’ve got to live as if I only have a few months left…because unless some drastic healing happens (which is ALWAYS possible) I only have a few months left.
It hurts to think about.
Even more painful, however, was to talk with our children about it today. We all sat on the bed, the same bed that we sat on nine months ago when we told them that I had cancer, and told my children straight up that their daddy was dying. Mom, dad, and India sobbed. Jones attempted to understand it. India simply said “daddy I don’t want you to go” and then she curled up in Jess’ lap and cried with us for about twenty minutes. Jones’s first response was to yell “No!” with quite a bit of emotion only to be followed up with a really interesting and clear decision to not be emotional about the matter. He wanted to talk about heaven, about cremation, and about my new cancer treatment. He drew pictures of me being buried, of me ascending to heaven, of my new home in heaven, etc. He wanted to know if he could bury me with some of his Legos; he had lots of random (and funny) thoughts. Eventually he and India transitioned into caretaker mode. They picked every flower that they could to give to me, they created a prayer space in our backyard to pray for me, and they did sweet things like getting me water and snacks. Jones even offered to take over Grassroots Conspiracy for me (he also suggested that Jess remarry). Here are some quotes from along the way:
- “Dad, do you want your scull and dead body to be burned up or buried?”- Jones
- “Just about an hour ago I was cursing cancer. I was saying things like ‘stupid cancer, I hate cancer’ these were the words I was using to curse cancer…But what if I said ‘you stupid fuck cancer?’ I mean, i wouldn’t say that ’cause it’s bad because it’s combining two bad words ‘fuck’ and ‘stupid’…but, you know, it’s just how I feel.” -Jones
- “Which graveyard is daddy going to be buried in?” -Jones
- “Dad, have you made out a last will and testament yet? Because I’m wondering who you’re giving your Nook to. Because…I like to read…and it kind of fits me.” -Jones
- “I’m going to miss you dad when you’re in heaven.” -India
- (after drawing a picture of me in heaven with God she then drew a picture of me with a penis…and then said…) “Well I sure knew that would cheer you up! I think myself so cute and cheerful!” – India
The rhythm that this cancer seems to have owned both before and after surgery, before and after radiation, daily chemo, and now monthly stronger chemo is to have a month or so of rapid growth followed by three or so months of inactivity and stability. If this pattern continues then we can anticipate that we’ve got about three to four months of stability where we’re at and come August there will be a period of new tumor growth. The major problem now is that there’s very little space for my tumor to grow anymore! There’s very little left in my central nervous system to be taken over by cancer besides my brain and the continued strangulation of my spinal cord. So new growth essentially implies death or complete paralysis.*
There’s still hope, there’s always hope. The next set of drugs that we’ll most likely try isn’t some bottom of the line last ditch effort–it’s a good option that has a decent success rate. Additionally we’re continuing our constant work with an amazing naturopath, dietary stuff, and all that jazz. There’s always hope.
But (and yes, there is a but). But it has come to that time where we have got to adjust our life to the new reality (always hoping that this reality is not what comes to pass). When you’ve only got six months to live what do you do? Who do you spend time with? How do you spend your money? How does one leave a legacy behind? What things do I need to stop doing? What things do I need to start doing? Ahh, so many questions! And, honestly, all I can think about is how few memories I have of when I was four years old. Will my daughter even remember me? The need to both create memories and to spend time chronicling stories and thoughts via letters, videos, etc. seems to be of the utmost importance.
Anyway, at this point I can see that I’m rambling. I obviously have so many thoughts that I’m trying to understand and I’m using you as a way to process through them. Thank you for that gift.
Again, there’s no good end to this blog. It is what it is. I do not grieve for myself–I have full confidence that I’m off to bigger and better things with the man upstairs. But I grieve painfully for and with my family. This sucks. And while we all knew that this would/could be a part of our story…I don’t think we could have ever imagined what it actually feels like to be here in this moment…and it…well…it’s no good. Keep my family in your thoughts and prayers.
* Much of this paragraph comes from Jess and my assessment. The doctor’s simple response was that time was very short and as an extension of that she adamantly said that we needed to move our family Disneyland trip up from June to…as soon as possible.