There is a secret Facebook Group known as Momcology. Lots of sub-pages for the different kinds of Childhood Cancer, age groups, locations etc. Lots and lots of Mom's. It is a wonderful support group where things are said that are not said in public.
We are often so caught up in our own room of Cancer World we don't know much about other rooms. Sarcoma Rooms,Lymphomas, Wilms, AML, ALL, Brain Tumors.... the list is pretty long. We all learn from each other. We learn about the way kids are diagnosed, the treatment and the follow-ups. We learn that some kids have to have a prosthesis eye and they out grow it. We learn Brain Tumor's are bad. We learn where cancers spread. We learn more than we ever wanted to know.
But most of all it is a place for the quiet despair and agony of the moms. Moms with traumatized children, dying children, relapsing children. Children with huge struggles from treatment and the lingering after affects. Teenagers, tiny babies and young adults. We watch and learn and do what we can to support each other.
One thing I have gleaned from months and now years of spending time on Momcology is that everyone has "follow-up" appointments. Most Moms deal with something called Scanziety. It is a little known disorder not yet recognized by the medical community but it is real and lives in the hearts of these strongest of strong women. They have to face sending their children through MRI, PET and CT scanners at varying intervals. The doctors are looking for signs of wayward cancer. As the day approaches, the intensity of the Scanziety increases. The tension and fear and feelings of total despair is ever present.
I don't want to belittle this fear but this week, I am wishing Meb had such a simple follow-up. A scan, a result, a conference and then a new plan or a sigh of relief and a new date for the next scan.
Oh, No Not for us.
It is a week long process of multiple tests and exams and evaluations. A week of it. Blood draws, close physical evaluations, Pulmonary Function tests, two separate eye exams, Dermatology, Hematology,
gynecology, two dental exams, PT, and then Vaccinations. All through the process everyone is on high alert and holding their breath. What will the test say? When will it all come back? Can they see anything? Is something hiding out?
It is the same sort of follow-up anxiety but packaged in another way.
I have come to believe that we will have bad news. I am just conditioned for that process. Today Dr. Balter (first of two eye doctors) came out of the exam room and came in my direction. My heart stopped. Dead. I asked him what was wrong and he laughed. and then said "I totally understand why you would react with so much anxiety. I was the one that started this process. But she looks great." (He was the doctor that first discovered something was wrong with her in 2004.)
I know she looks great. I know she feels great. I know she is almost 3 years out of transplant. She is back in school. She is off 99% of her meds. She may not have to go back for this evaluatoin again for 3 years. But I also know how close leukemia and secondary cancer's hover. I can say it all the time that things are fine but I also know that when ever we put her under this many thousand's of dollars of tests, something might rear its scary head.
It happened before.
So here I sit. Day 1 of 5 and wonder and wait and try not to work myself into too much of a tizzy. But as I fail to keep calm, I am not the only one. I am not the only Mom wondering and wanting to know if everything will be okay.
Day Two Tomorrow: Derm, Ophthalmology.
I can do this. We all can do this. We can survive a simple "Follow-up".