As I’ve mentioned before, even though I was in denial that I met the requirements to be in the club, I joined an online cancer moms support group a while back. Some days it’s helpful. Some days it’s hilarious as the humor inside this group is unlike humor you could ever share with someone who hasn’t lived a nightmare like this. Other days it is just more than one can possibly bear and it’s like torture to read the journeys others are facing knowing you could be next. But, like anything else new, there is a whole new set of acronyms and vocabulary that you have to learn to function well in this group. And, before you know it, you begin talking this new way. That and the fact that 90% of your conversations are now with a doctor or nurse lead to getting lots of blank stares from those lucky enough to still live in the “normal” world.
Scanxiety. It’s not even a real word. I quickly learned it, but didn’t really get why it was constantly mentioned. To me, it was silly and just par for the course and people were getting way uptight. I mean, we’re talking people whose children have been having scans regularly for 3-4 years or more. Not that I’ve ever loved scan days, but today it really hit me. I guess in some ways I feel less naive than I did in the beginning. I have read more and had harder conversations with medical professionals and I know the chances of bad news are just as likely as the chances of good news. I know cancer is ugly and unpredictable and ruthless. I don’t feel like I have a negative attitude, I just feel more educated. And, I know that subconsciously this is one way that I protect myself from how much more it could hurt with each new result. Today, full on scanxiety set in. It was beyond my control and I could hardly handle not knowing what technicians were seeing in my child’s body and not telling me. I actually got to be in the room for all of today’s scans – MRI, CT of chest, and full body bone scan. I was scared and worried and praying and fidgeting. I watched my son’s body get pulled into each of those machines. Precautions had been made to make sure they didn’t harm me, his mom, an adult, while I was in the room. But, his little body went right on in no matter how wrong it looked and felt seeing that little bald head get farther away. I know that each time he’s injected with more contrast or exposed to more radiation, his risk of getting MORE cancer increases. And, yet, I sit there and watch him being sucked right in. It’s hard. He’s NINE. He has to lay perfectly still for hours on days like this on a completely empty stomach. He’s grumpy because he’s hungry and his nose itches and he just wants to get up and go pee or just stretch, but he knows that will delay everything. So, he braves it and has become such a trooper on scan days. He’s so tall, everyone forgets he’s nine and expects him to act twelve. So, he does. He’s growing up so quickly because of this. It’s so unfair.
I was completely convinced during the bone scan (the only scan that I can actually see what they are seeing) that the cancer had metastasized to his pelvis just above the tumors in his right femur. I couldn’t even remain in my seat and I’m sure the look on my face was horrifying. Thankfully, the technician noticed this and assured me that what I was seeing light up was just a growth plate. While I am definitely more calm now, I won’t truly believe it until I am told by his doctors. I have no medical training whatsoever, so I’m pretty sure I’m way off…but it was definitely scary.
So, we end the day with very little information and a little on edge. But, we do have one piece of the scan puzzle confirmed and it’s WONDERFUL news! The chest CT came back clear! This means that the cancer has not metastasized to his lungs. This is huge considering that his chemo schedule was modified due to surgery and it’s been quite a while since he had high dose methotrexate, which is the chemo that keeps it from getting to his lungs. Osteosarcoma itself isn’t really all that deadly. Lung cancer is, and osteosarcoma spreads to the lungs 90% of the time. There is always a chance that it is there and too microscopic to see on a CT scan, but it is such a relief that it wasn’t found. So, we keep praying and waiting and hoping for more good news. It’s definitely time for good news instead of bad. We should know by Wednesday.
Our next steps…
Tomorrow we see the audiologist to find out how much hearing has been lost.
Wednesday (13th), he is admitted for approximately 5 days for more chemo.
Repeat next Wednesday (20th)
Tentative surgery Wednesday (27th) to put in a stainless steel plate to replace the carbon fiber plate that is currently coming unscrewed and either put in a prosthetic at the top of his femur or a graft and small plate. This is all dependent on today’s scans.
Recover and then 3 more weeks in a row of chemo.
Pray, pray, pray.