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!


Tuesday, August 17, 2010

Good news from MRI: New spot in liver is not cancerous

More good news....I had an MRI the other week to check out the new spot on my liver, and everything is fine.

So, we went on vacation. It was awesome. This was a secret to me: Provincetown is incredibly kid- and dog-friendly! So the kids had fun, the dog is finally relaxing a bit (Kenobi is very connected to me and to the kids, but typically shies away from anyone else), and we got to see friends in Ptown, in Truro and on Nantucket. A fantastic break from the norm, and my last chemo session feels like ages ago. I love that!

I remain so grateful for your support, as well as for the stories you share about others who have walked this road in various ways and healed.

A few weeks ago, Julian (newly 4) and I joined some friends at a swimming pool. Julian swam in the shallower end, Young Mr. R (our friends' son, who is 8) swam in the deep end, and I got to visit with my friends. After a bit, Julian got out of the pool, wrapped himself in a towel, and rested on a chair.

Soon, Young Mr. R called from the diving board, so we could see his dive. And a fine dive it was!

Julian is a good swimmer. He has been swimming since he was quite small, and is used to people making a fuss over what a good swimmer he is. So, he generally feels like a big fish and that there isn't alot of swimming left to learn.

But the diving board! It was the first time he's seen a diving board, as well as someone dive off it. A whole new world of swimming opened up to him, and he ran with excitement toward the board to try the same thing.

That is how I feel. I think that I am doing well, but then, I see or learn about someone else doing better, or someone who once was doing chemo and now lives a normal life, or someone who had a medical condition that invaded their lives and now doesn't need the hospital staff....that opens my eyes to new possibilities, higher paths, and the fact that these are even possible.

I am grateful for your stories, not just about health, but in every realm, because they help me (and I'm sure others) learn and grow and expand my world.

And again, thank you for your good wishes for chemo this week!


Tuesday, August 3, 2010

CEA results are in, and the news is good!

I am writing this from the infusion room, hooked to chemo, so pardon any fuzziness....

I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!

Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:

First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.

Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"

When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.

Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.

Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.

Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."

Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.

Love, Marie