Tuesday, August 31, 2010

Good News: CEA is 2.1

I got the wonderful news that my most recent CEA is 2.1. Below 2.5 is considered normal, so big sigh of relief here.

In the past, my CEA has been a reliable indicator of tumor growth. Each time it went up, there was a tumor growing in my body. Thankfully, the number has been getting smaller each time we test. And while this is a relief, I alternately hold tightly to this good news, even though it is like holding onto sand, or I project myself into the future and worry about whether it will stay low. When I feel like my best self, I do try my best to stay in this moment and enjoy it for what it is.

The past couple of weeks have been fantastic. We enjoyed fabulous weather (even the three days of torrential downpour), a boatload of interesting activities (kids went flying, swimming, sailing and fishing, and I even made JAM for the first time ever), and warm, fun visits with friends both at home and away.

After a wonderful two weeks, it felt strange to walk into the infusion room. No matter how normal I feel, this place makes me revert to being a patient. It helps that I have a tendency to get to know the staff, but, despite the friendly conversation, there are constant reminders that I'm the patient and they are treating me. They are the ones who take my blood pressure and oxygen levels. They have the liberty of commenting on my weight. They lead me to the chair where I will sit for a few hours (sometimes in a private room, sometimes not) and hand a blanket to me. The nurse sticks a needle into the port my chest to draw blood, making sure that my white count, red count, platelets, etc are strong enough for me to have chemo this week. The doctor talks with me to find out about the things going into my body (eating okay?) and coming out (vomiting, constipation or diarrhea this week?).

Even after the nurse leaves my little infusion area, I inadvertently listen to the conversations from the other rooms: How much nausea are you having? Are you taking Emend? Decadron? What are you eating?

When I am outside of Mass General, I feel great. Inside here, I am reminded that not everyone expects me to have good blood pressure and oxygen levels, a healthy and stable weight, and good blood counts. The fact that I haven't thrown up or had digestive problems is considered to be good news. But, it is also a reminder that these things are expected. I tend to try and live up to expectations, so I need to fight that tendency here.

Though I sound like all this is happening "to" me, I admit that I participate in it. For example, I subscribe to a number of health newsletters and news updates specifically related to cancer and colorectal cancer. The emails provide random reminders that I am in that world, too.

The articles in the emails are informative and sometimes relevant. A recent update referred to a study revealing that, in people under 40 years old, rectal cancer has been on the rise since 1985.

I don't fit the description of the typical colorectal cancer patient: older male who eats red meat. As I meet more people who don't fit the mold, I keep developing theories of other risk factors. The scientific side of my brain knows that we ignore data that lies outside our theories, or we treat that data as an exception. I want to scream, "Update your list of risk factors to include these outliers!" But it takes alot of exceptions to get our attention, so few studies are done on those outliers, like me. Or maybe I am simply just looking for an affinity group.

Regardless, I read this report with fascination. I talked with my husband and my doctor about the study, excited that someone noticed a pattern outside the standard assumptions. I felt a certain connection with this group and was happy to feel noticed in this way. Then I realized, I'm not actually under 40!

So here I sit, in my over-40 body that feels great when I keep my mental gymnastics out of the mix, waiting for my chemo cocktail. Thank you for all your prayers and good wishes. I know that each of you has your own particular challenges, either personally or with someone you love, and I really appreciate that you share your positive focus on my treatments as well. It makes more of a difference than I can describe. If you think of it (or even, right now!) send some quick good wishes for a good chemo session and chemo week. And I'm sending those right back at you!



ruth pennebaker said...

Marie -- I've had two women friends diagnosed with colon cancer when they were in their 40s, so have wondered about the accepted wisdom, too.
So glad to hear you've had a good time away from the hospital. Thinking about you and wishing you good chemo experiences. Love, Ruth

Anonymous said...

Marie, I just read your post and in the beginning I thought I wrote it, until you got to the 40 year old part. I am a 60 year old male that fits the mold (eats red meat). I have had colon cancer 3 times. 6 years ago I had a tumor in my colon and had it removed. 18 months later I had stage 4 colon cancer, it moved to my liver. I had chemo treatments and surgery and then 18 months after that I had reoccurring stage 4 with another tumor in my liver. More chemo then surgery followed by more chemo.
It has been 2 years from my last treatment and my Oncologist told me today that my CEA is 2.1. I have truly had an adventure!If anyone reads this and they are going through treatments I hope this gives you hope. Don't give up and don't go through it alone, God loves you.