Scarlett and I just got back from a quick trip down to the "Valley of the Kings Sanctuary and Retreat" for exotic and rare animals. For Christmas our family got a 6-month membership there so that we could support their work as well as have a place where the girls, especially Scarlett, could be around some of the big animals that she loves.
It is about an hour drive down to the sanctuary, and on this cold day we were only there for about 30 minutes, so that gave me nearly two hours in the car. Two hours while Scarlett played on her iPod and I got to think.
To think about the last 48 hours and how this damn cancer journey never really ends.
On Wednesday I was back in to the UW Cancer center for my quarterly scan, and by now these have become routine. I was have CTs done every 3 months and MRIs every 6 months because everything seemed to be going so smoothly, and I assumed that this would be the same as it had over the past two years.
The scans went as smoothly as they had before. I took my happy pills and the MRI wasn't as horrible as it could have been (yeah lorazepam!), and friend stopped by and chatted with my before the CT and that was a great way to pass the time, and then Jennifer and I went in and got the results. The CT looked stable, but the doctor did say that he needed a specialist to look at the MRI and he would call me if anything looked out of the ordinary otherwise he would see me in four months.
The meeting ended on a very positive note - we wee going to push things out four months instead of three.
Then, the next evening, he called.
The radiologist had looked over the MRI and it turns out that one of the spots on my brain that we had zapped a couple of years ago was starting to grow and there were a "few" more spots appearing.
It meant that the cancer was active in my brain again. It was still stable in my bones and the rest of my body, but active in my brain. And the targeted radiosurgery was not an option this time because there were too many spots. So the options I have were limited.
The biggest issue with all of this is that there are very few drugs that cross the blood-brain barrier when it comes to treating cancer. The drug that I am on, while it is great for treat the cancer I have in the bones and the body below the neck, doesn't cross that barrier. There are two FDA approved drugs that work with my cancer, one of which somewhat crosses that barrier, one that does not. There are two immunotherapies for this type of cancer, and I am not sure how they relate to the blood-brain barrier. And there is one drug currently in trial that has had great success in crossing the blood-brain barrier.
So I am entering another trial. In talking with the doctor, this drug holds the best chance dealing with the spots in my brain medially at this time.
The other option is whole-brain radiation. This is where we would do radiation to the entire brain to try and wipe out all of the cancer cells in the brain. There is some success with this but the side effects include memory issues. This may need to happen down the road, but it will be a last resort.
So on Friday I was going in for my quarterly eye-ball shot (yes, I get a shot in my eye every 12 weeks because of there is a spot behind my left eye that is probably cancerous). They arranged for me to do some pre-trial testing since I was going in already, to get the ball rolling so I could get enrolled in the trail. It is also at this time that I learned I would be the fifth person in the trial at UW.
The other pre-trial test I get to do is a lumbar puncture. I am trying to think of this in the best possible light, by saying that I get to do a new test I have never done before, but I will admit that this is one that I am not looking forward to. I will do that one next Thursday.
So that is all the technical stuff, now the mental stuff.
I had gotten to the stage, in my head, that the tests were routine. I would go in, take the tests, have good results, then go on for another three months. For the past year especially I was taking the good results for granted.
This phone call was a harsh reminder, don't take anything for granted.
For me, there has a been a lot of darkness in the last 48 hours. A lot of sorry and anger and crying out and even despair.
But I also know that I won't stay in that place forever. It's only been 48 hours. That's why I wanted to make that drive with Scarlett today. I wanted to get out of here, to go do something she was excited about, because I wanted to see life through her eyes again. To hear her giggles of joy when a tiger chuffed at her, to watch he squirm when a lion roared at here. To see her eyes light up when she saw a ti-liger (one of 4 in the world) and be wowed with all of the animals in that place.
I needed to be around life today.
And that is the key, as this journey continues, to do the technical stuff, but to be surrounded by life. It is too easy to be taken in with "what could be" - I know, I have been. But to celebrate the moment, to give thanks for those who are walking with you and praying for you, to strive to live out the dreams you have while you can - to live, that is what we are all called to do on this journey.
I will probably be putting up some more blogs in the future, not only related to what is happening with my cancer journey but other faith related issues. I thank you again for your prayers and for your companionship on this journey. You are a blessing to me.
No comments:
Post a Comment