A Strange Land, Now Familiar

The following essay is from the NPR My Cancer weekly podcast:

Ten months ago, when I was diagnosed with this latest round of cancer, the disease took over my life. It consumed everything. Whatever I did, thought, planned, hoped for, feared — everything passed through the prism of cancer.

I told myself at the time, and I told others as well, that I wasn't my disease. But I don't think that was really true. I think to most people in my life, I stopped being me. I became a cancer patient. That scared them. Heck, it scared me.

And everything really did change. I had to find a way to work around the chemo schedule, find a way to still be productive — even on the worst days. My body changed. Terms like "CEA," "CT scan" and "MRI" were new additions to my vocabulary. I became a stranger in a strange land.

A lot has happened in these last ten months. But maybe the biggest change is that the novelty — I really mean the total disruption of my life — has mostly worn off.

My medical treatment has become a routine. Chemo on Monday, blood work the following Monday, scans at regular intervals. I take the pills about the same time every day. It's part of my morning, just like shaving or brushing my teeth, and part of my evening, too. I know how to schedule things in three-week cycles to match the chemo. That first week, I'm not worth very much. Second week, better, I can do just about everything. The third week, my week off? Life's almost back to normal. That's when I try to do more social things, see friends, live my old life.

The fears are not as powerful as they used to be. For almost a year, I've been having conversations about my death, and when and how it might come. The more you talk about anything, the more it loses its power to frighten or depress you — even death. I know much more about the disease now, so a lot of the mystery about what's actually happening inside me is gone, too.

One person wrote in to the My Cancer blog saying that cancer makes us lose our vanity. I think that's certainly true. One of my doctors said having cancer means more people will want to talk to you about things you don't want to talk about. He was absolutely right. But I'm well past any squeamishness like that now. You want to talk about the disease — mine or anyone else's? No problem.

Now, this doesn't mean everything's just fine. It isn't. But it's funny what we can get used to. Ten months ago, when the words "brain tumor" and "lung tumors" were still echoing in my head, the doctors said a cure was unlikely. But their goal was to enable me to live with my cancer as long as possible. And that's what's happened. I have learned to live with my cancer. I guess I'm no longer a stranger in this strange land of cancer. Now it's my home.

 

Comments (Send a comment)

As a twenty year survivor of cancer that was deemed, for me a terminal cancer, I am moved to share some advice with you and others in the same boat. Long ago a dear friend ask me not to take possession of the cancer and consider it mine. It was an unwelcomed intruder, it did not deserve a possessive pronoun... give your mind and body permission to usher this monster illness to the door. Visualize every moment you are receiving chemo that what is being pumped into your body is a knight in shining armor hell bent on attacking and ridding your body of the unwelcome agent and making you well and strong again. I have since lost three family members to different types of cancer.

Sent by Mary Dell Long | 11:00 AM ET | 10-16-2006

Good you have learned to live with your cancer, which is the ultimate goal to learn to live with our mortality, and the rest falls into place. Keep on writing, this is another one who has learned to live with her mortality.

Sent by Maria L. Young | 11:07 AM ET | 10-16-2006

Leroy-

Coming to terms with our limited time here on Earth, is coming to terms with our legacy, what's important, and what the gift of life means. You are such a brave, decent soul, I hope you get many many more productive years to inspire all of us. As my grandma use to say "No one is getting out of this alive." I miss her dearly, but she inspired me, just like your legacy.

Sent by Laura | 11:09 AM ET | 10-16-2006

Leroy is so eloquent and so amazing. He's become very adept at learning to take one day at a time. It's too bad we have to face a terminal illness before we are good at doing this.

Sent by Margaret Morris | 11:12 AM ET | 10-16-2006

Isn't it amazing the things to which humans can adapt? I am sure when you were covering war zones, or countries far different from our own, there were some people to whom the most difficult of circumstances had become their way of life. I guess we naturally seek some kind of normalcy. Routine can be comforting.

Sent by Sandi | 11:13 AM ET | 10-16-2006

Leroy,

It was 22 years ago when my wife was diagnosed with uterine cancer. We were expecting a child at the time and when the doctors said: "Abort the child, have a hysterectomy and begin chemotherapy" we were devastated.

But instead of going through the program the doctors had prescribed, we decided to save this child.

We began a regimen of natural herbs, meditation, vegetarian foods, and prayer. I delivered my daughter at home in Santa Fe, N.M., and just minutes after the birth of my daughter, the cancer tumor was delivered. My daughter is now 21, and very healthy.

20 years ago, cancer was a death sentence, but miracles do happen.

Sent by L. Thomas Bell | 11:15 AM ET | 10-16-2006

Ten months ago, I was diagnosed with Stage 3 breast cancer. For a very long time, my every waking moment was dominated by thoughts of cancer, fear, sadness and dread. But like you, I gradually got used to the new reality, made adjustments, became able to function and think of other things. Last week I had a vacation in a beach town with my four sisters. We shopped, ate, reminisced, played games, laughed till we cried, and generally had a fine time. Cancer was hardly mentioned. It was wonderful, but letting your guard down like that (forgetting for awhile) can mean getting hit even harder when reminded suddenly of what probably lies ahead. Yesterday I got an email telling me of the death (from breast cancer) of a beautiful woman, a patron in the small library where I work. We were laughing together just 10 days ago when she came in to check out more books on tape! AS I read that email, my phone rang. It was the husband of an old friend whom I hadn't heard from in awhile. Weeping, he told me shed died of breast cancer. I guess both pieces of news coming together naturally came as a shock, but also reminded me like a slap in the face of my true situation. I'm not sure what my point is here — maybe just that life with cancer is a roller coaster ride. I certainly don't want to be on guard all the time! I want to live life as fully as possible, forgetting about cancer whenever possible. But it's still there, lurking in the background...

Sent by Doris | 1:07 PM ET | 10-16-2006

I understand, Friday once again I was doing the "routine" MRI and bone scan... even the staff remember you. I'm looking forward to reading your blog tomorrow.

Sent by Meredith P. | 1:09 PM ET | 10-16-2006

I woke up the other day to find myself in a strange new land. That is exactly how I described it to my husband. I am now among the dying. My pancreatic cancer has returned and there is nothing that can be done. I have been offered several clinical trials, but I think I may not even qualify for them. Even more to the point, I don't think they qualify with me. When I read that patients live an average of 12 days longer and that the side effects are nausea, vomiting, the runs, anorexia, and so on, I have to ask, "Is it worth it?" No, I can't say it is. I am trying to live the rest of my life. I want the best quality of life I can manage. The cancer will make me sick enough, soon enough. Why ask for more suffering in the name of 12 days?

I never was much of a gambler. The odds always had to be pretty good for me to take a risk. These odds just aren't good enough for me. I hope you will all understand and not scold me too much for giving up and losing hope. I don't see it that way at all. I just feel like I am preparing for the next phase of my life. My daughter asked me if I was afraid. I asked her, afraid of what? Of death, she responded. No, I am not afraid of death I am slightly worried about the time leading up to my death, though. I'm really not into pain at all. It has started, though, and I don't really know how much intense it will get. Interesting process.

Sent by Stephanie | 3:04 PM ET | 10-16-2006

"The more you talk about anything, the more it loses its power to frighten or depress you" — I couldn't say this at the time, but that is exactly why I yabbered on about cancer for the first year, working my way through it. Thanks for saying it so well.

Sent by Chris | 12:32 PM ET | 10-17-2006

Mr. Sievers, hello again — I hope you're doing better. See how many people support you, and care about you? You're not alone. Reading the story by Stephanie written on 10/16/06 broke my heart but also made me smile to see the strength in her despite what she's anticipating in her up-coming days. If it makes any difference, please know that your stories give us hope, it teaches us to appreciate life, and it makes us say "my life is not so bad after all." Similarly so for you, you may think you're feeling weak, sorry for yourself, and perhaps even lonely and betrayed, but in reality you guys are the strong ones and we can only look up to people like you for strength. I can't say much, I don't know what its like to have cancer, and I hope I never find out, but I just wanted to show my support and tell you that I care enough to take a moment and read this site every week. I hope that you know there are thousand other people that care about you just like I do. I pray that your journey left isn't too painful.

Sent by Dori | 12:34 PM ET | 10-17-2006

A show on PBS had a segment today about the US new Poet Laureate, Donald Hall. At the end, he read a poem, "Affirming." I bring it here because it seems to deal with the same issue that you have written about in a few posts recently, the issue of how or if we have positive thoughts about real loss in our own life. Hall speaks of it in terms of aging, which is inevitable to all, not cancer, which only happens to some, but even aging includes less loss for some than others.

He starts by saying that "To grow old is to lose everything./Aging, everybody knows it."

He then forces recognition of how aging sneaks up on us, as we row innocently on life's pond, by listing loss after loss after loss. He ends: "Let us stifle under mud at the ponds edge/and affirm that it is fitting/and delicious to lose everything."

I don't know what to think of this, honestly. I am having a hard time accepting it. It seems to me that it should sound like the work of someone who is clinically depressed, but it insists on somehow being.. affirming. What a word.

I am not losing everything, but because of health problems I am losing some things. What does it mean to be affirming about such things? In some ways I think I see the existence of your blog itself as an example. Recently, your posts have also given me... inspiration to accept the possibility of seeing the "delicious" — without denying the mud.

Sent by Suzanna | 12:36 PM ET | 10-17-2006

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