When I first found out I needed surgery, I did what any red-blooded, twenty-first century American does, I googled. And . . . I didn’t really find a whole lot. Sure, there was plenty out there about having a median sternotomy, but almost every site was related to bypass surgery. They were geared to elderly patients and much of the focus was on the recovery of the heart. Some of it was interchangeable, of course, but I wanted to know more details about what to expect from the surgery itself.
I knew that if my tumor was benign, I would walk – well, be wheeled – away from surgery to deal with a different recovery than the heart patients. If my tumor was malignant – well, my post-surgery journey was going to be very unlike the stories I was reading.
I said from the moment I left the hospital I wanted to record the ins-and-outs of my recovery. It has been a year, so I should probably get around to doing that now. I’m going to break it down into a few easy-to-handle parts over the next couple of weeks. I’ll start with the research I did beforehand, move on to the actual surgery day, then the rest of my time in the hospital, and end with my recovery at home.
So first, what I did find when I googled. Aside from the heart-related articles and lots of youtube videos of surgery (no thanks, I still haven’t watched one to this day), I found a couple of very useful sites:
1) Foundation for Thymic Cancer Research (http://www.thymic.org) and their related yahoo support group. This site had stories and resources galore – both on the main site and the support group. It wasn’t really the best resource for me, however. Thymic cancer is rare and often diagnosed very late. The stores from the group were heartbreaking and not the best for a person with a mystery tumor. I gained a lot of knowledge from the site, but it wasn’t a place I needed to keep visiting until I found out if my tumor was benign or malignant.
2) Youtube videos from Thekarinski69 (http://www.youtube.com/user/Thekarinski69). An actual person talking about her thymectomy – the only thing like it I found at the time. It was encouraging and comforting to see someone talking about it. Even if my experience didn’t end up anything like hers, it was just great to hear the voice of someone else out there.
3) The NeuroTalk Support Group for Myasthenia Gravis (http://neurotalk.psychcentral.com/forum77.html). Myasthenia Gravis is an autoimmune neuromuscular disease that causes fatigue and muscle weakness and is sometimes linked to having a thymoma or other thymus irregularity (when my thymoma was discovered, I was asked questions and went through tests associated with MG). People with MG will often have a thymectomy in an attempt to relieve symptoms. This particular message board was the absolute best place I found information about younger people without heart issues having a median sternotomy. I poured over the archives and checked it daily for new stories.
I am a historian and archivist – a research-professional by trade. It was important for me to walk into surgery armed with the best information I could find. And I found some good stuff. What I was lacking was a wealth of in-depth stories, practical information guides to what I was about to experience. I hope my next few blog entries can add to that little corner of the internet and help someone googling away like I did.