Chemo tomorrow and other truths

I am heading into chemo on Tuesday, so do send any prayers, good thoughts and general good vibes this way! I know how much this all carries me through chemotherapy. Thank you.

It's been great to have three weeks off and to have the energy to handle normal, everyday events. This was the year that A-man learned that his parents, not Santa, deliver the gifts under the tree. Yes, we perpetuated the Santa myth, and we let it go on until he insisted on an answer.

Like many heart-to-heart discussions, this one happened in the middle of the night. I admitted that, yes, we left the gifts, and then, when he asked why I lied to him for so long, basically stammered a version of, "Everyone else does it."

Now, if he lied to me and gave that excuse, I know that I would immediately jump all over him. He, however, generously entered into a discussion of why so many people feel like they need to make up something like Santa Claus, how so many people got on board, and how it lasted for so long.

After he fell asleep, I lay awake, talking to God, and then pondering whether my belief in God resembled his belief in Santa. I know how much I rely on God, but A-man also relied on Santa as the central concept to his idea of a fabulous Christmas.

I thought about this off and on while we enjoyed our holiday vacation. We traveled to Pittsburgh to bask in the warmth of my large Italian family and feed my soul. I enjoyed just being in the same room as my aunts, uncles and cousins, and watching my kids build a relationship with their cousins as well. I felt so fortunate to be able to travel and to have all that.

We went skiing in Vermont with friends. I'm not exactly a cold weather pet, but J-man wanted me to ski with him, and he loves it so much that I couldn't say no. 

Actually, that wasn't the main reason I couldn't say no. I constantly remind myself that when I was in the hospital, I would have given anything to be able to ski, or do anything. Now that I have the chance, I should do it. Who knows whether I could do this tomorrow.

Over the holidays, we had more than enough reminders of how life can change on a dime. We received news of a friend getting divorced, another newly diagnosed with late-stage cancer, and a healthy 22-year-old who was dear to us and didn't wake up the morning after Christmas. 

So, J-man and I skied with our friends. He is already a more confident skier than I am, looking for jumps and challenges along the way. As he took each jump and experienced the thrill of catching air, I watched his little body with my heart in my throat.  

I love his belief in his body, how he just knows what it can do, even before he tries it. While I could tell him not to do a jump, it doesn't change his solid inner knowledge of his physical capabilities. I don't have that belief about my own body, no matter how hard I try.

It struck me that my belief in God feels like that. Even if other people tell me that God doesn't exist, that doesn't ring true within me. Just as J-man knows when he can do a particular ski jump, or when A-man understood that we leave the gifts under the tree, they each knew what felt true inside them, even if we don't all feel the same truths.

I feel joy watching J-man do just about any physical activity, and my conversations with A-man take me to the most creative and thought-provoking places I have ever been. Without trusting their different inner truths, I don't know that I could go along for the rides.

I feel so lucky and grateful to have the times with family in PIttsburgh and friends in Massachusetts and Vermont, all of whom, I'm sure, see their own truths in the world. I'm not so crazy about going into chemo tomorrow - makes back to school look like fun! But really glad that you will be with me in spirit and sending good vibes, and it helps me to know that you will be there in that way. Thank you for that, and for letting your own inner truth shine through in your life and with me.

Love,
Marie

Found the tumor via surgery!

To those who have written recently, thank you so much for your notes, prayers and concern. I can't tell you how much it helps!

Catching up over the past couple of months:

In May, my husband had surgery for thyroid cancer, and had his thyroid removed. That same week, my blood tumor marker started to rise, indicating possible cancer. The PET CT showed some "activity", but subsequent ultrasounds and an MRI could not find a tumor. I wrote it off as a medical miracle.

In July, I got re-tested, and my blood tumor marker was high enough to indicate definite cancer. A new PET CT showed "activity", so we skipped the ultrasound and MRI and went straight to surgery. There was a risk that they would find nothing, so they left it up to me, and I decided to take that risk and move forward with the surgery.

It was almost comical to try scheduling my husband's radiation therapy (where he cannot be around other humans for quite a few days) and my surgery (where I will need his help). Plus, it is August and the surgeon was planning her vacation.

The week before surgery, Tiron had radiation therapy, which required him to be in isolation (but not in the hospital, go figure). So I left town with the boys and had a good time visiting relatives. When I returned, I went into the hospital for my surgery.

The surgery, overall, went well. They found a pea-sized tumor in my rectal area, and removed it along with my entire rectum, lymph nodes and fatty tissue. I lost a ton of weight as a result, but I don't recommend this as a weight loss strategy! It was open abdominal surgery, and, wow, I'm sore! They were able to reattach things, and I have a temporary "bag" while that area heals. I'm grateful that this is temporary.

The bag itself is a weird concept. I had no idea, but they actually PULL YOUR SMALL INTESTINE THROUGH YOUR ABS. It sticks out of my stomach like a tongue. Weird. And the bag stocks to my skin and hangs from that and catches whatever comes out.

The bag itself is easy to manage, but psychologically, this is hard to get used to.

The other hard psychological thing is simply going through all this again. I'm not bouncing back the way I have in the past, with strong faith in God and in the future. I worry whether I will see the boys grow up, and realize more acutely that people do die young. It makes me really sad, and while I try to change my thoughts, these are the ones that come creeping in.

I also feel a bit removed from God and from the greater good of the Universe, though I do keep getting various signs. Like, I was in bed in the hospital, feeling sorry for myself with this bag, when my much younger roommate, almost as though she could read my thoughts, volunteered to tell her story and that hers was permanent. And she was dealing with it much better than I was.

Or, when I was in the hospital, I remember really needing to connect with this guy, Ray. Ray was one of the guys who built our house, not even the main lead guy, just here occasionally, but I always got a particular calm when he was around, and he prayed for me last time around. I remember really needing to see him, and thinking, oh, well. I can't just call him.

When I got home, Tiron told me that Bob was going to be here soon to fix the screen doors. But Bob happened to send Ray. It was like an answer to my prayers. So, there are those events, and I'm trying to grab onto those and claw my way back to some place of trust and peace. But I'm not there yet.

My parents are here to help with the kids and the running of the house, and the neighborhood has really banded to together and they are delivering meals. Logistically, we are doing okay, and I just have to pull myself out of this ditch! So do send prayers, positive thoughts, whatever you can spare!

I am waiting for the doctors to call today with the results of the pathology report, and it is making me more anxious than I can remember being.

I hope you all are doing well! It has been a glorious summer overall, and I LOVE this weather.

Much love,
Marie