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".
So we all know that this blog has been about Surviving Childhood Cancer. I have belly ached and whined and cried and cheered when appropriate.
I am a member of a group called Momcology and there the Cancer Mom's of the world kibitz and the smiles are less prominent because we don't have to make everyone okay with the fact our children are so so sick and often die. The group grows every day and every day there is a bit of hope, a lot of despair and hopelessness. It is a real representation of Childhood Cancer. Moms that are just starting, Mom's ending, Mom's with kids that have relapsed and died. It is not a happy happy place but It made me wonder why ti seems such a good place to hang out.
Many supportive friends have helped us all through this difficult process. We have been the beneficiaries of much giving, both time and money and practical actions. Much prayer, encouragement and cheerful wishes.
I was reading something about a woman in an emergency room and another patient looked at her and said: "Everything happens for a reason." The writer wanted to yank the woman's hair out. I am a bit more forgiving. As Cancer Mom's we don't even know how to respond to the words that swirl around us. Things like Chemo Therapy, Radiation, 40% chance of survival are common words in our vocabulary. We no longer live in mainstream universe. We are off somewhere in a place that looks like our world but with a heavy dose of Twilight Zone set dressing.
So here are some ideas the next time someone posts their kid is having a rough time or you hear about a family that is going to be dealing with long term health issues, don't just respond with "I am praying for you." While that is nice an all, send them a gift card, no amount is too small. Go the the blood bank and donate blood. If you live in the same town, go and promise to take out their garbage every week. Rake their leaves. Organize a meal train for the family not in the hospital. Make the child or parent a really soft pillow case from all that fabric you have in the basement. Connect. The kids love I-Tunes, Target, Victoria Secret gift cards. Cash in your miles so a family member can travel.
Trust me it does not take much. As the blogger pointed out today:
if you want to help someone in distress, buy her a cup of coffee or a cocktail. Tell her you have experience something similar and you feel much better now. Tell her you understand how she feels, how unfair her circumstance is and how much it can hurt when fortune frowns on you. Smile. Tell her you are sorry she had some bad luck.
Bluntmoms.com
Today I met up with some Momcologist. Often this is a moment of healing and joy and support. Today it was a moment of support. We gathered to support one of our own at her son's celebration. It was a great bitter sweet event. Laughter, tears, moments of deep sadness, some relief in coming together.
Clearly a very extra ordinary person had his life hijacked from him.
We often mention that a person lost their "fight" with cancer. That is was a brave battle. They were a trooper, they soldiered on. There was a positive attitude and braveness is always mentioned. We heard a lot of that today. Everyone fought, everyone prayed, everyone pleaded, everyone did all they could to keep death away.
I just don't ever want to hear that Daniel, or Micheal, or Alise or Ruby or Nala or Owen or Mario or Sarah or the endless others "lost". They are not losers. They did nothing wrong. They did not take a wrong step or fail to do something right or not do ever thing possible to conquer cancer. It is not fair to say a child has lost a battle. Winning and losing would be appropriate if there were rules of the fight. Like the good old day when everyone agreed on what day the battle would take place. The child's life was hijacked. In many cases there was really nothing to be done at the end.
They had cancer. It is unpredictable. It is ruthless. It does it's job in ways no one can figure out. It is a very poorly designed invader/alien force. It has not figured out how to reach stasis. It kills it's host. It isn't just happy to settle into a bone, or a lymph node, or a kidney, along a nerve or an eye. It wants more. It wants to see how it can continue to survive in other places. Lungs, brains, other bones.
Today I felt like we were all a strand in a web. The middle was Daniel and the stands and circles of web were populated with all the friends, families, care givers, teachers, neighbors, classmates, doctors, ministers. Everyone in the web, there to say goodbye to the center of that particular web.
The webs are fragile and each day have to be re-made. When the center is gone and the strands are broken, a new creation has to be woven. Clearly he left much more of himself behind to help with that process.
Daniel is gone. His life was ended by his cancer. He is so much more than the kid that "lost" his battle with cancer.
