CEA and D.C. — Some Good Things

Both CEA and D.C. are abbreviations representing good developments in my life at the moment.

CEA stands for carcinoembryonic antigen and is a protein typically found in high levels in the blood of those who have colorectal cancer. In a healthy person, CEA is usually 1 or lower; smokers may have CEAs of 2 to 5. Before my surgery, my CEA was 53. I remember calling my NY internist, Dr. N.L. from my hospital bed in Los Angeles about my CEA level before the official biopsy report came back confirming cancer. (Dr. N.L. knew what was going on with me throughout the ordeal and I could always reach him within 30 seconds, night or day. Have I mentioned how much I love my doctors and how this whole experience has reinvigorated my faith in these miracle workers who often get a bad rap? I’ll have to write another post about all the doctors who stepped in to save my life. Maybe it will strengthen or restore, as the case may be, your faith in the medical profession):

“So I have my CEA result. CEA is the tumor marker…” I began.

“I know what CEA is. What is yours?” He interrupted in his characteristically laconic style, with his New York Jewish accent. In retrospect, it was rather insulting of me to think that Dr. N.L., renown professor of emergency medicine at NYU and 37-year practitioner wouldn’t know what CEA is.

“53” I said just as laconically.

“OK. We know then that the tumor is malignant. We’ll watch to see your CEA go down to 0 once you’re in treatment and will test your blood every three months at least.” Dr. N.L didn’t miss a beat. No hesitation. He was so matter-of-fact, so calm, that even though he had just heard confirmation of cancer, he still managed to be reassuring to me. Well, of course, your CEA will go down, he seemed to be saying.

The point is that CEA in the world of colorectal cancer matters. It’s not as important as scan results or actual visible inspection during surgery, but it matters and therefore is the source of anxiety for those of us fighting the disease.

Three weeks after my surgery, it was 28.1. We expected to see some decrease after the surgery, reflecting the removal of the tumor. Ten days later and right before I started chemo, it was 26.5. The fact that my CEA was still so elevated more than four weeks after surgery indicated to me that there were and are indeed microscopic cancer cells floating around my body. Both Josh and I had hoped by some miracle that the CEA would be down to 1 after the surgery, but it was highly wishful thinking considering the nodal involvement (meaning the number of lymph nodes — 12 of 68 — that were found to be cancerous).

A month after starting chemo and as tested last Monday just before Chemo Round 3 of 12, it was 20.8. The fact that the number went down by nearly 6 points one month after the commencement of chemo is suggestive that the chemo is doing its job and the cancer load in my body is being reduced by the most powerful weapon in my arsenal. I say “suggestive” because CEA can be a very unreliable marker and certainly too unreliable to be used as a diagnostic indicator for colorectal cancer. Some people may have elevated CEAs but not have cancer at all, as elevated CEAs may result from inflammation and other reasons not related to cancer. Some people with more advanced cancer may have much lower CEAs than I. It seems though that based on my CEA trend pre- and post-surgery, it is a decently reliable marker for me. So, I’m glad the CEA has gone down. It’s a good thing and we certainly want it to go down as opposed to up.

As to D.C., I’ve been asked by Colontown, a community of colon cancer survivors to go to Washington, D.C. in early October to receive training in patient advocacy (a/k/a lobbying) and then to appear before New York Congressional representatives to dissuade them and the rest of Congress from reducing funding for colorectal cancer screening and imaging. Colontown is a secret group on Facebook where members are invited to join by the leaders of the group, with the objective being the maintenance of an online community open to only those with colorectal cancer. I was found through a posting on another colon cancer support group forum and this blog. It also just so happened that I was the 1000th member to join the group. I’ve never been the 50th, 100th or 1000th member or customer or whatever of anything, nor have I ever won an iPad or a new TV. Stuff like that never happens to me. So what does it mean that I was the lucky 1000th member to join Colontown? Is there a message in all this?

I agreed to go to D.C. Why not, especially since someone else will be picking up the tab? I mean I’m a lawyer. I can talk. How hard can it be to shake some hands and chit chat about cancer? A part of me is thinking though — introverted apolitical me lobbying? Really? Seriously???

Cancer has made me more open. I was already pretty open (as those of you who know me can attest and those of you who don’t know me can guess from reading this blog). But cancer has given me a new sense of freedom, a sense of truly having nothing to lose. So, why not go over to that total stranger and start a random conversation? Why not suggest a lunch date with someone I’ve never met before? And now, why not go to D.C. and open myself to new life experiences and the new people who await? I don’t know where my cancer fighting journey will take me, either in terms of my prognosis, my life’s purpose or whose life I will touch. But I’m walking, even running, forward with open arms, ready to embrace it all.

 

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6 Comments (+add yours?)

  1. minnie
    Sep 16, 2013 @ 19:51:06

    if there is anyone who can articulate the struggles of those living with cancer, it’s you. i am sure you will do a kick-ass job with this as you have with everything else. so glad to hear things are going in the right direction.

    Reply

  2. Katie Vogler
    Sep 16, 2013 @ 22:06:50

    Good news about your CEA! We will test mine in a couple of weeks to see how I am responding to chemo. I work near Capitol Hill and would love to support you in any way I can. Any chance you will have time to meet while you are in DC?

    Reply

  3. paddleboardgirl
    Sep 17, 2013 @ 11:40:45

    Great news about the CEA – yay! And yes I agree with minnie – I can’t think of anyone who could do a better job at advocating for us! You go girl!!! (how can I get invited to Colontown? thanks!)

    Reply

  4. Masha
    Sep 26, 2013 @ 12:09:59

    Dear Julie I read with interest all your posts and Inspired by your openness strength and honesty we live outside DC your are welcome to stay with us when you come or anyway we can help. Love to you and yours. Masha, Harry’s wife

    Reply

  5. poorab
    Sep 26, 2013 @ 14:35:04

    ‘So what does it mean that I was the lucky 1000th member to join Colontown? Is there a message in all this?’

    yes there is a message and I think you already know what it is.
    if there is anyone who can open people’s eyes to the struggles you faced and now face, and the senselessness of what passes for scientific policy in the united states, it is you.
    it’s a funny thing, but most smart educated types respond poorly to numbers, data, statistics. they respond to stories and people.
    your story encompasses so many political hot button topics (immigration, health care reform, NCI and NIH funding, ‘gender’ politics, and I could go on) that it I could think of no one better to fulfill your role.

    so yeah, there is a message in all of this. you are the message.

    Reply

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