I went to Chemo Teach with my mother-in-law yesterday. She is beating breast cancer as we speak. The cancer was diagnosed in December; she had a double mastectomy in early January and is headed to chemo on Friday with radiation later on. In Chemo Teach, a nurse walks through the process of what is involved in chemotherapy and what she can expect. A prettily designed, information-filled binder was given to her and she was shown the treatment room. In 45 minutes everything was explained. My mother-in-law was overwhelmed. As a participant-once removed, I took it all in and found it all so interesting. There’s so much cancer and money and research into cancer, so there are protocols in place on how to go through the process. I felt like I was on a smooth sailing ship listening to someone else explaining how things are done.
With Carrie, mitochondrial disease is considered a “new” disease science, going back only 30-40 years. It is also a much more rare abnormality in the world, though they think it may be an underlying cause for many health issues. I have never been given a binder with “this is how you handle mitochondrial disease.” Such a book doesn’t exist. We do have a book called “Living Well with Mitochondrial Disease.” It’s a good book, especially for the newly diagnosed. But, with mitochondrial disease each person with the disease has their own story. A “one-size fits all” just doesn’t work for every kid. I put together binders about Carrie all the time. What I provide for Carrie’s caregivers, family and friends probably won’t work for other kids with mitochondrial disease.
Also interesting in Chemo Teach was the number of steps my mother-in-law will go through and then the treatment will be done. And the cancer will be gone. (Actually, they say she is cancer-free right now. The chemo/radiation is follow-up protocol for her type of cancer.) With both my girls and their health issues, the issues are for life. There is no end. We never sign up for only six occupational therapy session, for example. Their health issues are life-long and so therapy will probably be a part of their whole lives. I have always thought it odd when someone tells me they were given a prescription for eight weeks or four weeks of physical therapy or something. How can that be? An end to therapy? I don’t see an end. I only see a way of life.
Unfortunate circumstances for my mother-in-law but it’s real nice to just be the receiver of the information and not have to figure it all out on my own. Carrie has a great team of doctors, therapists, teachers, paras, family and friends. But, the figuring-it-all out and putting it all together always comes down to me. With no end in sight, it’s an overwhelming and exhausting job.
P.S. I’m not complaining here; just explaining. For Carrie, the end will be “The End” and I sure don’t want that. So, I will just continue to learn, be overwhelmed and tired. It’s okay, Carrie is worth it.