Monday, August 31, 2009

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,

Friday, August 21, 2009

Preliminary results are in, and no clear answers

Well, just after I posted, the phone rang and one of my doctors was kindly calling me with preliminary results. They've been putting off calling me because they don't yet have a recommended path forward. Yikes.

Here is the bottom line: If "cancer free" is the best news, this is second best on the list. Basically, the lymph nodes are clean (yay) but one margin is not. This means, they found tumor cells near the edge of the area they cut, so they need to assume that there are some left behind (little rectal humor there).

Of all the margins, this is the "best" one to still have tumor cells because there are no adjacent organs, but no one quite knows what to do about it. They will discuss it at a conference at the hospital this week to get the recommendation of other doctors.

So, options are, watch and wait (meaning, let the tumor make the next move), radiate, or do chemo, or any combination. More surgery for this is not an option, at least right now.

No clear answers, but at least there is something....

Love, Marie