Hi Everyone,
My apologies for taking so long to update you all on the results of my PET. I got the results Monday and spent that day trying to make plans. First things first. The PET did show uptake in the 1.1 cm area on my liver we were concerned about based on the CT I had last week. The SUV number (amount of metabolic activity measured) was low, but higher than normal. This was enough of a concern that it’s cancer that my surgeon wants to go ahead and surgically remove it. I have yet to get my MDA doc, Dr. Javle to weigh in on this plan but I have gone ahead and booked surgery for August 17th in Houston with Dr. Curley.
The kids and I are currently in Vermont and had planned to stay here through the 12 then head to Nantucket until the 20th. Sadly we won’t make it to Nantucket with the Cullen’s and the Flatow’s. I am sad because I was really looking forward to being with good friends and spending a week in one of my favorite places. My soul could really use that salt air and that beautiful wind blown landscape. However, I am taking in all the gorgeous green grass and blue mountains of Vermont and loving being here with Dana, Paige and Jenny and their families. It’s a pretty magical place and the kids and I are lucky to be here with friends that are really family. So I am not complaining.
We’ve had a few bumps this week. After the news on Monday that the the PET was not clean, Monday night at 2:30 am Phin came into my room sobbing that he had the worst headache of his life. I drove him to the ER In Burlington at 3:00 am and he spent the next 5 hours sobbing from head pain. He had a CAT scan that was clear and then they did a spinal tap and finally diagnosed him with viral Menangitis – specifically Cocksakie. This is a viral infection that settles into the fluid around your brain and spine, which explained the headache. We finally left the hospital at 5:00pm Tuesday night. Wednesday brought severe back pain and today Phin went back to the windsurfing camp he had started on Monday with my Godson Leo and the headache came back. So he is sleeping as I type. He’s not having quite the vacation he was hoping for but he has had a fun summer so all is not lost.
On the bright side, we did have some fun last night at the Addison country fair where we watched demolition derby and rode rides and generally enjoyed a beautiful Vermont evening. I have to mention how wonderful friends Dana, Todd and Paige have been. Lending cars, feeding us meals, taking care of Charlotte and lending support as we’ve sorted out this mess with Phin. Poor Charles gets my news over the phone followed by news that Phin’s in the ER 24 hours later. It hasn’t been a week without drama!
Where am I with all this? I do believe life is tapping me on the shoulder ever so slightly with some sort of message but I haven’t yet deciphered what it all means. I am pissed really that there seems to be more cancer yet I’m not scared. It’s an inconvienence. I don’t want to have surgery again. I don’t want another scar to add to the mounting number of cancer inflicted slashes to my body. I don’t want to be the patient and have to ask people to help me. I’m tired of talking about me and cancer. It’s starting to define me in ways I’m not digging. As I said though, there’s a message in all of this and I’m curious about the meaning. I have been feeling untethered; a bit of a bystander in my life and I’m looking for some good foot holds. Everything is murky right now and I can’t say it feels very satisfying. It’s up to me to find my groove so that’s what I’m trying to do. There’s work to be done for me, that’s obvious!
So that’s the latest and the greatest. My kids know what’s going on. Cancer is becoming routine in some ways although I’m sure their radar is back on high alert with this set back. They are wonderful people Phin and Char and I am so grateful they continue to thrive despite shaky ground.
Enjoy the waning days of summer.
xoxo Hilary
