Fighting Brushfires

Well, I screwed up. I meant to set aside a particular note that came in because I wanted to write about what was said, but now I can't find it. I'm sorry, because I may not do justice to what the author said. She used one phrase that stayed with me. If I remember correctly, she talked about the danger of "letting down your guard."

Many of you who have gone into remission, or whose cancer seems to have gone away entirely, have talked about the same thing: that feeling that it's still out there, or more accurately, still in there, just biding its time, waiting to show itself again. It doesn't seem possible to ever really relax, to ever think that, in fact, you're over it.

It's funny, after my first diagnosis and surgery, I never thought about the cancer coming back. After four and a half years of clean checkups, I figured it was something that happened and wouldn't happen again. Sort of like getting the chicken pox. Once you get over it, you don't have to worry about it again. But I was wrong. It did come back.

I can understand that fear. After going through a bout with cancer, it's hard to totally believe it may not come back. It often does, and I guess the heartbreak of that recurrence is worse the second time. At the same time, we can't all live our lives in fear — of anything. It's easy to say that, not as easy to do it.

Those of us who still have active cancer in our bodies feel a little of that same fear, that reluctance to "let down our guard." Having cancer can be a little like fighting a brushfire. You put it out in one place only to have it show up in another. You're constantly on the lookout for that next hot spot. My doctors thought I had a tumor in my liver, but it turned out to be harmless. One hot spot extinguished. Then a new tumor showed up on my spine. New problems.

It's not like I can really do anything about those new flare-ups. As my doctors said, it doesn't matter if you have one tumor or six, they're going to attack them all. But that doesn't make that feeling of unease, of needing to be watchful, go away.

I guess peace of mind, a life free from worry, is another thing that cancer takes away from us. I guess we're sort of like those guys in the old Western movies who always say, "It's quiet. Too quiet." You know that as soon as they say it, they'll get hit by an arrow. I think a lot of cancer patients flinch ahead of time, because we know what it feels like when that arrow strikes home.

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It is difficult to walk the line between being totally oblivious to cancers return and living in fear every day. I had colon cancer last year, and am now cured. I'm convinced of it. But there's a voice in my head that sometimes creates doubt.

The bottom line is — what can you do about it other than try to keep yourself in good health and go for your regular check-ups and screenings? That won't prevent a recurrence, but early detection can sometimes pay off.

I've decided what I need to do is just "be here now" and live my life without anticipating trouble. Im doing what I can do to try and prevent a recurrence, but when it comes right down to it, I can only do so much to prevent cancer from reappearing.

Sent by Marilyn Sagrillo | 10:21 AM ET | 10-18-2006

Thank you for writing this! I have been frustrated with coworkers and family members that say I must remain positive that the surgery and treatment got all of the cancer and not think that the cancer will return, as if my paying attention to recurrence could think it back. Since I don't think I thought it here the first time, keeping watchful and knowing that the type of cancer I have (ACC) is aggressive, surely won't encourage the cancer to return! I don't believe I asked for this disease to show up in me, through actions or emotions. The balancing act for me will be to still live in positive ways (following some of the suggestions that folks wrote in about on your earlier posts), while not letting my guard down. I have always believed that being aware makes life easier in the long run, and plan on continuing to live my life that way. I figure I need to be aware of the future value of my retirement fund, fluctuating property values, and possibility of recurring cancer, in pretty much the same ways (grin!).

Sent by Teresa Hartman | 10:24 AM ET | 10-18-2006

Another interesting post. I have a question that I would love to read your thoughts on—when people suggest alternative treatments (and clearly you receive all sorts of suggestions in this forum since not a week goes by without some posts), how do you respond? I don't mean to put you in the hot seat but when well-meaning people suggested various supplements, diets, etc. as my husband continued with traditional treatment (chemo, radiation, surgery), some people acted angry and some even said they didn't think our choices were correct. Just curious...

Sent by Andrea Clay | 12:13 PM ET | 10-18-2006

As a nutritionist who has been working with cancer patients and their families for twenty years I suggest using the term "expedient diet" when you are going through treatment. This means you are doing the best you can to maintain your strength and resilience. What many people recommend is more for a preventive type of situation and is more relevant once you are through the intensive phase of treatment. I have put together a handbook that some of you may find valuable.

Sent by Carolyn Katzin | 3:50 PM ET | 10-18-2006

First, Leroy, thank you for your wonderful blog. Having discovered it, I am now a grateful daily reader. And I also read and appreciate the comments, which are also helpful. I am now 16 months out from surgery. After chemo ended, I had a kind of manic period—I was alive, mobile and enjoying every minute! Now I am thinking about recurrence, and considering how my life is changed. Now I am someone living with cancer. I think each of us finds the way best for us. For me it means seeing a traditional Chinese medicine doctor, cleaning up my food and drug act, meditating and discovering who I am—calming down. And also considering what it might mean to die in a year or two. I just don't know. It also occurs to me that none of knows when death may suddenly occur—folks with cancer just have more awareness of that reality, I think. Again, thanks to you, Leroy, and all commenter's here.

Sent by Jane | 10:30 AM ET | 10-19-2006

I am newly done with treatment for aggressive breast cancer, and am adjusting to the 'what now' feeling. I really appreciate your thoughts on this issue, because I am struggling with it as well, although I hope and pray that the cancer is really gone. I've read a great book, written by Lynn Eib, called Finding the Light in Cancers Shadow, and she addresses this issue. She talks about being 'free-of-cancer' versus 'cancer-free,' meaning we can hopefully avoid letting the cancer dominate our focus, even when we can't control its influences on our bodies. Not having the shadow of cancer hover over us, but finding a protective Shadow. It is written from a Christian perspective.

Thank you again for expressing these tough issues so well. We are all benefiting from it!

Sent by Karen | 10:33 AM ET | 10-19-2006

Once again Leroy, you did it for me. Having cancer recurrence puts fear in me daily — my crazy thinking. Your blog seems to be the only thing I read on this subject. You and my blog family are honest and truthful. To all my cancer blog family members, be careful of what you read on the internet. Stay focused and stay grateful for today. Yes this does give me more awareness of life, funny isn't it?

Sent by Meredith P. | 12:18 PM ET | 10-19-2006

Leroy... you rock! Thanks for being so real. I look forward to your blog. I am the mother of a child who is living free of cancer. We are four years out and enjoying every moment! I loved what you said about the specter of cancer's return and how it messes up our minds. Other people think their solution is best, be it a food plan, supplement, clinic, whatever. They want to fix it. There may be no fixing at some point. We have tried to help our child understand that it is nothing she did to bring this cancer to visit. But we need to say, OK, what do we do now with this situation we are in? We can rage, or we can resolve to do our very best to keep positive and moving forward. Our future is in the hands of God no matter who we are. Keep writing Leroy... you are an encouragement to many!

Sent by Beth | 2:54 PM ET | 10-19-2006

To the extent possible, live each day. Sure, even for people in remission, such as myself, cancer may return at some point. But that is out of my control. If I spent time worrying about it, I would forget that each day is a gift that needs to be lived. There are all kinds of terrible things that can, and do, happen to people. If and when they happen, deal with them at that time. None of us know with certainty what the future holds, but each of us knows that we have life at this moment in time. Best wishes to all who read and participate in Leroy's blog, which is clearly a huge asset to so many of us.

Sent by Art Ritter | 10:36 AM ET | 10-20-2006

Boy, really relate to this one. My husband was diagnosed with colon cancer in 2001. He took the most aggressive path — colectomy — and healed well, got used to ostomy etc. No follow-up chemo was deemed necessary, and there is a family history. We thought that that was that. Then, in Dec 2004, BAM! Duodenal cancer and the cause was genetic (HNPCC). Now, post Whipple surgery, he and we are coming up on the end of year two of this new world in which 5FU w/Avastin cycles are as recurrent as the change of seasons. We watch his CEA go down, down, down. Then CAT scan, then PET scan, then endoscopy. Breathe. After awhile, recurrence. Repeat. A life of vigilance measured in two week chemo cycles and, if he's lucky, one month lab test cycles. It's as thought were living in (psychologically) Base two and everyone else is in Base ten. An utterly different clock and calendar that will never get back to "normal." But, a life and that's a lot.

Sent by Teri | 10:45 AM ET | 10-20-2006



   
   
   
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