One Week Away

I have begun writing this blog post more times than I care to count. Each time I get about a paragraph into it and then I stop – abandoning it and deciding that I’ll write the rest another day. Then another day comes, I start again to abandon it once again.

I tried to figure out why that was. I think that the subject is too overwhelming for me. I can’t believe that I’ve finally come to this point in my cancer journey. It’s time to get the permanent ostomy bag.

Those of you who follow me know that I have been dreading this time for many years. I narrowly escaped a permanent bag many years ago. Then – last October, a rectovaginal fistula broke through and I was told that it was time for a bag. But then, amazingly, it seemed to heal and I was given another reprieve.

Unfortunately, I was wrong. It didn’t heal. I was able to keep the tissue fairly intact for a long time. But – when we took the girls to Washington DC for Spring Break, the constant running around and strain on my fistula was too much and I began to experience necrosis of the tissue. There was no going back.

Over the last two months I ran around to different surgeons – USC, UCSF and the Cleveland Clinic to see if they had any other options than Stanford had presented to me (which was a permanent ostomy bag). Unfortunately, each surgeon agreed with Stanford claiming that my only option at this point is the bag.

In May I was given the opportunity to address my board, other leaders in the life sciences and members of Congress about my life as a cancer patient. I took that opportunity to ask the life sciences leaders (in particular the medical device leaders) to let me know if they were aware of anyone working on an artificial colon. Alas – it appears as if that’s not something that is imminent.

So – here I am, attempting to prepare myself mentally for the challenge I have in front of me. Next Wednesday, July 1^st, I’ll go under the knife again. When I wake up, I’ll either be sporting an ileostomy or a colostomy bag. I’m hoping that it will be a colostomy. I’m not going to go into the reasons why, but apparently, life is a lot easier with a colostomy.

I’m scared. I cry easily. I so dread this permanent change in my body. I know that lots and lots of people live with the bag. I’ve talked to many of them. I was even connected through a friend to Rolf Benirschke, who used to be a kicker for the San Diego Chargers many years ago, and in the middle of his time with the NFL, ended up having to get a permanent ostomy – but STILL was able to return to the NFL. He has been holding my hand, along with so many others, as I am about to embark on this difficult journey.

I guess that this would be easier if this would mean the end of my cancer journey. But it doesn’t. This doesn’t impact the cancer at all. All it does is fix my piping so that my body isn’t susceptible to becoming septic. Furthermore, when I was at Stanford last week, my cancer indicator number had jumped up. So – I’m getting a bag and there is a strong possibility that my cancer is growing. Let’s just say that it’s not an easy time for me.

I am hoping that getting this bag on will reduce some of the constant pain that I’m in. I am on some pretty significant pain meds. I don’t like living my life on pain meds. It’s just not right. But – the pain is too great to go without them. I wake up many many times during the night in pain. I’m never rested. Perhaps the bag will bring me some relief. Some sleep. Oh – how I’d love to have a full night of sleep.

As the time gets closer for my surgery, I find myself in an emotional upheaval. It’s hard to keep my head on straight. But – I have to. I have a job that is counting on me. I have children that are counting on me. I have me that is counting on me.

Please send prayers my way over the next week. My body is about to change dramatically. But – it’s time. I’ve held out as long as I could. If I wait anymore, I’ll be putting myself at risk. And – that just isn’t worth it.

Thank you for all of your love, prayers and support. I’m sorry that I didn’t tell you all sooner about this. But – I still think I’m coming to grips with it. I guess it’s a good sign that I finally made it through a blog post. Before, I erase this and start again another day – I think I’ll just push “post.”