Archive for June 25th, 2009


What’s next?

June 25, 2009

My release from the hospital actually went as planned (just so you know I do some things in regular fashion) and I got to sleep in my own bed Sunday night. My great pal Mandi transported me, Marc, my Mom and a freakishly large suitcase back home where Marc had spent hours cleaning and organizing for our return. Mom got settled in to our guest room/office and we set out on figuring how to live as Man, Mom in Law, and Druggy Gimp for the forseeable future. Words have been exchanged and toes were trodden, but there have also been laughing fits, nice meals, and crossword puzzle management to fill our time together.

I know most of you are interested in the WTF part of my last post, so I’ll dig right in. As I mentioned, cancer was discovered in my peritonal wall and it is impossible to treat surgically. I learned that there is no scan technology available at this time to see these kinds of tumors in this specific area, so no errors were made. Obviously, my docs would have never sent me in to surgery if there were a way to detect this type of cancer from the outside.

Docs have explained that chemo is now the best option for treatment. It is a way to manage these tumors and ideally shrink them or at least keep them from growing or spreading. As you all know, I responded to chemo very well last time and did not experience a particularly difficult time with side effects. It wasn’t exactly a cake walk, but it wasn’t horrible.

The big hurdle here is that my planned procedure had been a possibly “curative” option. In other words, that surgery had the possibility of removing all of the cancer from my body and possibly eliminating it long term. My current situation has no “curative” option. My cancer is certainly “treatable” and even “manageable”, but anything that looks like total remission or a cure is not in the picture.

So, this is not great news. Not gonna sugar coat it. However, cancer really doesn’t have a true “curative” option for anyone in the big scheme of things. I knew from the day I was diagnosed that my particular strain of colon cancer has a very high reoccurance rate and that it would likely be a challenge I faced on and off for the rest of my life. In fact, 5 or more years ago doctors didn’t have any effective treatment for a gal in late stage like me, so I’m grateful for all of the technology I’ve benefitted from in just the past year.

Chemo it is. Dr. Fab (my oncologist) explained to me that cancer will now be a chronic disease I will manage, like other folks who deal with diabetes, heart disease, etc. It takes vigilance on the dr’s part and some lifestyle changes on mine, but there is action that can and will be taken. Dr. Fab explained to me that she can actually keep me on chemo indefinitely and that she has patients who have been in ongoing treatment with her for years and years. I have met a couple of her patients who have been in chemo with her for 2 + years and honestly, they don’t look bad. They are both older than me and seem very put together and used to the routine whenever I see them. I have a model for how life can co-exist with treatment and it’s not just barf buckets and head scarves.

I didn’t get to chat in detail with Dr. Fab about my drugs or frequency of treatment etc, but I have an appointment to discuss all of that in two weeks, once my belly has healed up and I can better take a chemo punch. She mentioned that she is cheffing up a totally new combo for me that will probably not include Oxiliplatin. (the drug that gave me the freakish sensitivity to cold) Reality is, I live in Chicago and that won’t work for me long term. Its details like this that make me feel confident that we can create a plan that provides treatment strong enough to keep my cancer at bay and still keep a manageable quality of life.

When you ask “How are you?” I know you aren’t really referring to the pain, but more my mental game. Of course I would have rather the surgery went as planned and I’d be anxiously awaiting my next scan. But you know what? Now I’m going to start chemo and spend time anxiously awaiting my next scan. That part never changes for a cancer patient and I got used to it a while ago. I have friends who get scanned every three months, never knowing if their life will be upended for another 3 months while they do their 5th, 7th, or 14th surgery. While indefinite chemo blows, at least its predictable. I will eventually figure out my rhythm of good and bad day cycles and discover new hurdles, but its not a complete drop from society with little warning like surgery. I’m not naive that my life or “new normal” won’t have some limitations, but I’m pretty sure I can take it. And if treatment starts to really make me miserable, that’s when I chat with Dr. Fab and we make adjustments. I always have the power to say no to anything that makes me feel truly awful.

I would like to point out that progress in treating cancer is made everyday. There could certainly come a day in a month, a year, or more that a surgical “curative” option may become available. We plan to stay updated and condsider this and all other developments that come along, without making ourselves crazy chasing lizard pee elixirs from Peru or magnetic underwear.

I view this new development, not unlike my diagnosis. Its just one of those crappy bad luck things that sometimes happens to people and this time it was me. I quit pondering words like “fair” a really long time ago because I find it completely unproductive. No one “deserves” to get cancer. Its not “fair” for anyone to be challenged by such a montrous disease, but I am, in this specific way, and we move on.

I’ve seen every episode of The West Wing and I’ve always loved President Barlett’s use of “What’s next?” There’s a hostage sitaution in the US Embassy in Columbia? “What’s next?” Call in the military big wigs, get advice, create a plan, and make it happen. There’s no wringing the hands over what we can’t change, no rehashing to determine cause or blame, no stewing over how we will ever go on. Just get information, evaluate, and take action. And when the crisis is contained, “What’s next?” because there is always something new to be dealt with. Pointing fingers or asking why gets you nowhere. It just keeps you from enjoying and living in the here and now.

What’s next for me is chemo. And Ravinia picnics. And a 50th marathon celebration with Sue in Vegas. And pork chops.

See ya there.