Wednesday, May 21, 2014

Post-Op Reality and the New Game Plan

I'm currently sitting in the living room at my wife's house. I'm on the sofa and I keep looking across the room to the table where my paperwork from yesterday's oncology visit is sitting. I know what is inside the folder and I really want to pick it up and look closer, but then I really don't feel ready yet. My doctor briefly touched on the findings from my post-op pathology report yesterday. He covered the most important parts and rattled off a few numbers and facts that all come back to the same fact - I have stage 3 endometrial cancer.



Stage 3 means the cancer cells have left their place of origin and gone rogue. As he drew cartoonish diagrams of my anatomy and pointed at things, he told us that cancer cells were found in both of my ovaries and in the lower lymph nodes he sampled. The one bit of good news is that the higher-up lymph nodes and the area near my stomach tested negative, meaning that the cancer has not traveled north yet. Once it starts to do that, it settles into other organs and causes a whole other set of issues to deal with.

I was not prepared to hear the words "stage 3" or for the fact that my doctor is starting my chemo treatments next week, just 3 weeks after my initial surgery. He wants to kill what is left in my body on a molecular level before it has a chance to settle in somewhere else. It has been 24+ hours of an emotional roller coaster, although we are both holding it together and talking our way through everything. I am facing 6 - 3 week cycles of chemo. This means I will be locked into a cycle of weekly visits to my oncologist's office for 18 weeks. I was hoping for a little bit more time to feel well before poisoning myself in order to hopefully save my life. That's the way the cancer cells crumble.

This also means I may not ever get my pre-chemo tattoo that I wanted to help keep me motivated through the process. I learned that it would have to be completed before I start chemo because we will be killing off my immune system and I will not be able to get work done after we get started. So many little depressing things add up, but I'm allowing myself to process it all in the hopes that by this time next week I will be ready for 18 weeks of treatment without any baggage. Maybe a tattoo seems like a low-priority thing at a time like this, but it really does become about the little things.

We are also having to cancel a beach trip I had been looking forward to. Throughout my surgery/recovery I've focused on being strong enough to make that trip before chemo. I'm also giving up a massage coupon that's going to expire and a few other positive things I was looking forward to. I can't mow my lawn or plant my seasonal veggies. I can't do any of the home projects I desperately wanted to work on this summer. Heck, I can't even pick up or move anything because I am still on a lifting restriction right now. These are all things that weigh on me, knowing I can't even have that little bit of my "regular" reality in my life. At the end of the day, focusing on saving my life is what is important. I have to tell myself that 18 weeks of chemo will heal me and allow me to do all of those things and more down the road.

We have managed to find a few light-hearted moments in the midst of taking on all of this overwhelming new information. Sam had put googly eyes on a few things in my hospital room while I was sleeping. The nurses loved it. She drew a mustache on me (with my permission) and posted it on Facebook for our friends. It sparked a support campaign of self-portraits of friends with silly mustaches that made me giddy. My doctor is finally catching on to the fact that we have a sense of humor and are using it to keep things light. He was examining my stomach and the 5 entry wounds that are healing and said it looked great. We told him it was huge and the most beautiful shade of purple after surgery. He said, "You're artists, you probably took photos, right?" I told him not only did we take photos, but I told Sam my stomach looked like a grumpy monster and that she should put googly eyes on it and take photos. Those photos are my favorite thing by far through this whole experience. The doctor laughed and thought that was great.



During my appointment, the doctor also drew a diagram of what "normal" lady parts look like and then drew an example of what my "new" vagina looks like after surgery. To use his exact words, "It now looks like a tube sock, rounded on the end, with stitching". Let's say Sam is making lunch and going through food options for me. She will ask if something "tickles my tube sock", instead of asking if something floats my boat. Sometimes you've just got to embrace the little things and find the humor in whatever life throws at you. Googly-eyes on my swollen, purple belly, drawing a mustache on me while I'm waking up from surgery, and giggling over silly words and imagery - this is how we cope.

I am fortunate enough to have a positive support system that includes friends, family, and community. They make me laugh, listen to me talk, offer to drive me to my appointments and sit with me, and now are offering to do fundraising to help me pay my bills while I can't work as well. I know how rare my situation is and I am appreciative. Please don't think that I am ever feeling sorry for myself or ungrateful for what I have. It's exactly the opposite - those things I just listed are the things that keep me going and will see me through all of this. Most of all, I have a best friend/spouse who gets it, all of it, and is ready to be whatever I need depending on how I'm feeling each day. With her by my side, my support system, and my kick-ass doctor and his team, I'm going to stay positive and do this thing. I mean, really, who could ask for anything more? Maybe tomorrow I will feel strong enough to pick up the report on the table and read through the entire report of the dissection of my lady parts. Just maybe.

3 comments:

  1. Thank you for sharing your story. I am keeping you in my thoughts.

    ReplyDelete
  2. I love how your words tell the entire story and I thank you for sharing your journey with those that love you and care about you. When I 'grow up', I want to be like you. Hugs and love, Kelly <3

    ReplyDelete