The Warriors Need a Better Plan

 
“You know, in my heart, I still want to play to win. I don't want to just survive; I want to beat this thing into submission. Humiliate it on its own court.”
 
 

Play to win. That's pretty much the way I've tried to live my life. It's not enough to win the game — you have to beat the opponent. Yes, I'm a pretty competitive guy. And playing to win means taking a gamble, going for it, being bold.

Well, I started chemo again today. As I write this, my right forearm is numb and my hand, where the IV went in, is pretty sore. But the game plan has changed. We're not really playing to win. Early on, the doctors were brutally honest with me. They said that "cure" and "remission" probably weren't going to end up in my file. The cancer had progressed too far. Doesn't mean it can't happen, but it's pretty unlikely.

So I find myself playing "not to lose." If a win isn't in the cards, I'm stalling, playing for time, trying to go as long as I can without losing. We know the chemo I went back to held the tumors in check last time. We're all hoping that the same thing will happen this time. But again, that's just buying time, hoping for a breakthrough, hoping the next thing we try will work. This is, after all, a field where a new treatment leading to an additional four months of life is seen as a victory. That's what my doctor said today.

I understand the way this game is played. But you know, in my heart, I still want to play to win. I don't want to just survive; I want to beat this thing into submission. Humiliate it on its own court. OK, sorry, getting a little carried away. But playing it safe, watching the clock, hasn't really been my way. I'm finding it hard to play by different rules now. In fact, I don't think I will. There's still time on the clock — who knows what can happen?

So while I have been butchering sports metaphors, Laurie, who has spoken about her feelings here before, has been thinking about the war on cancer, and she's a little angry.

War is nasty business. We are in one that we can't seem to make much of a dent in, and there is clearly no way out. It's the same old story. Our armor isn't up to the task. We're made little progress. Small victories in hot spots have saved a few lives, but in the places where the enemy is entrenched, we're still behind the eight-ball.

In many battles, we're still fighting with decades-old equipment. The men and women who are leading the fight in this war talk the good fight. They have great credentials, but for some reason, there hasn't been the breakthrough we've needed to stomp out this pervasive enemy.

We have to rely on our troops to get results. They are fighting with everything they've got, just to survive — only to face the same battle again and again. I have one of those warriors living with me. Every day he goes into battle against this enemy. Every single day.

I watch him and can't imagine having that kind of strength, mind and body. So, let's hear it for the warriors. They are the tip of the spear in this war. It's time for the folks in the white lab coats to take their places on the front lines. The warriors need a better plan.

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Here is a link to a former co-worker, about her journey with liver cancer. As you'll read, she made a decision on how she wanted her life to be after she learned that her cancer was terminal.

Leroy, I must say you are very courageous in writing this blog, on a Monday-Friday basis, and a short weekly podcast. Your candor, honesty, and sometimes overwhelming words, have scared me, shocked, and humbled my problems, as I read your posts. I know your words will reverberate in my subconcious mind, and feelings for the next few years, but, what I do as a tangible reaction to your life, cancer, and blog is still unknown to me. Take care, live every day as normally as possible, and don't look back.

Sent by Stanley Suan | 7:23 AM ET | 08-08-2006

I often wish the guys in the white coats would at least take down the walls that separate them from us the patients. I wish they somehow wanted to get to know us, to know what we think, to know how we feel. But this has not been the case. It is a visit with the "coat" that last for a few minutes each month, followed by long, diffricult treatments. Then, every other month, a CT to see if anything is working. Thank God, my wife is a caring family practice physician who understands the needs of patients.

Thank you for you insight and your inspiration.

Sent by Scott McGaw | 12:28 PM ET | 08-08-2006

My mother died from soft tissue sarcoma about a year and a half ago. She, too, was an author and a journalist/columnist who could find the humor in all aspects of daily life.

However, she never got around to writing about her battle with cancer. I think she felt that if she committed it to paper, cancer would become her identity.

I want to thank you for writing this blog. Even though everyone's experience with cancer is unique, there are still so many things that those of us who have lived in the world of cancer hold in common. Your insights help me to better understand my mother's plight with this evil disease. Thank you for your honesty and candidness. You're touching lives and building a legacy.

Sent by Rebecca Duggan | 12:30 PM ET | 08-08-2006

I have several friends who did not accept what their doctors said about their chances for remission or recovery, believing that the statistics simply did not extend to them. One was diagnosed with stage 4 colon cancer ten years ago. At our hospital here they would not treat it as aggresively as he wanted, so he moved to Arizona with his family and found a doctor who would perform the surgeries he wanted to try. He had mets in liver, lung and I believe small intestine (or large?). Anyway, he, like my friends who have survived stage 4 cancer said: "The statistics dont apply to me," and proceeded to do chemo, radiation and surgery. Three surgeries. He is cancer-free today. He did have a small recurrence about two years ago in his lungs, and radiation took care of that.

I have a friend with stage 4 breast cancer and she reminds us at our support group: "I am a study of one... don't give me someone else's statistics for survival." And indeed she is. Having lived with liver metastasis by that statistic would have her dead years ago. So when my doctor recently began with statistics about Avastin, which I happily take now, I was able to say: "I have lived with stage 4 breast cancer years longer than the statistics already. I am a study of one. Neither my friends or I listen to statistics." She was great. She stopped telling me the chances on paper, the likelihood of months it would give me.

At times you need be informed of treatment statistics. Maybe wisdom in this case is knowing when to listen and consider, and when to say: "I am a study of one and dont need to hear the data." I have been so so fortunate to know so many people who lived way into prolonged remission, who never according to statistic, would have gotten there. Don't let those doctors telling you you have little chance of remission put a damper on hope. Of course you can get there.

We will all be thinking of you on Friday.

Sent by Nancy O. | 12:34 PM ET | 08-08-2006

So, your doctor said survival is unlikely. Doctors speak about what they have seen — they have seen many people die from this diagnosis. We have all seen people die from this diagnosis. So, we, as a culture, have come to believe that this diagnosis means certain death. They told me I was terminal five years ago. They told Lance Armstrong that, too. The question is DO YOU BELIEVE IT? Do you buy into this cultural belief or will you choose to reject it? This belief runs very deep, so it is difficult to reject. Would it be easier to reject it if you knew of people who PROVED IT WRONG? Like Lance Armstrong? Like me? Like a friend of mine diagnosed over 40 years ago with Stage IV cancer who is alive and well today? Like some other patients your oncologist probably knows? It DOES happen. Survival from terminal cancer DOES happen. People are living today that are proof that it does — so that cultural belief must be WRONG! Find those people and talk to them. Medical science cannot explain why we are still alive. KNOW that survival is possible!! And, know that survival is not eternal. No one survives this physical existence. And, healing is always possible — because true healing involves parts of the self that medical science cannot touch.

Perhaps your strategy for fighting the war can include a plan for healing your whole self — the body is just one part of the whole self. Take responsiblity for that healing — it's all up to you and what you CHOOSE for your own healing.

You could start with JOY — what brings you joy? What are you doing when time passes quickly unnoticed? What do you look forward to the most? What are passionate about? What makes you laugh? How do you feel when out in nature? Fill yourself with joy — it is an incredible healer

Sent by Maggie McDermid | 1:40 PM ET | 08-08-2006

Reading the comments has been a fascinating experience, but by the time I reached the end, I am left with a familiar, sick knot of fear in my gut. And Im one of the lucky ones...later this month, I will achieve the coveted "cured" status. Five years ago, out of the blue, I was diagnosed with non-Hodgkin's lymphoma. I didn't get "the look" out of the blue, I got a phone call. Reading the blog and comments has brought feelings and fears to the surface that I had buried.

I was a happy survivor. Now I see how my husband must have felt, caring for me. He never said a word. I remember how I failed my friends, who wanted to help. A memory I have tried (and failed) to bury deeply is of my thirteen-year-old daughter, running sobbing to her room when she heard me say "Cancer?!?" into the telephone. I own a green sweater I bought to wear in the chemo room, and I still cant bear to look at it. The beginning of humid weather fills me with panic, remembering that awful summer.

What is it about this disease that does this to us? It doesn't deserve to own our lives or our fears. The treatments are barbaric, but some of us get to win, which is why we endure it. Leroy, I wish you the best. I pray you win. And if that is not how this game plays out, I pray you have as many more days as you have desire to live. I pray you and Laurie have as much happiness as you can find. I wish you the best.

Sent by Mary Ann McKay | 1:44 PM ET | 08-08-2006

Leroy,

So you decided not to do the risky, possible stroke causing drug. Your comments seemed confusing to me today, like you're not sure this is what you want to do, but this is what the doctors wanted for you. Am I misreading you? I am happy that you are without symptoms but at the same time, not having any symptoms must be one hell of a thing to deal with, when faced with all these scarey decisions. We must keep the faith that our doctors know what the devil they are doing. Do not doubt them, question them. Bless you.

Sent by Ruth | 1:49 PM ET | 08-08-2006

Leroy, I hope all is going well for you in your first couple of days back on chemo. I fell behind reading the blog for a week, so I am just catching up and learning of your news. I wish you all the best. The most important thing is, as mentioned in your blog, make your decision stick to it and look forward. We deal with the same thing with my dad all the time and I can relate to the "unknowns", or will the chemo work or not... (I mean just everything you mention). Reading the part on Laurie just gave me chills. You guys keep me going and allow me to realize on a daily basis that my dad is not the only one with the "unknowns"— it's all of us out there.

I think of your blog all the time and how you (and Laurie) have influenced my life tremendously when it comes to dealing (and uderstanding) what my dad goes through and what we learn from the doctors each time we go (which sometimes is "we don't know", "we are not sure", "we have to wait and see"!

I hope all is well!

Sent by Cristina Gonzales | 7:03 AM ET | 08-09-2006

Leroy, it was great to see you and Laurie on Saturday. Can I add another anecdote to the one's above? Gordon's Uncle Ernie was diagnosed with lymphoma when his was in his early 60s. The doctors gave him six months at most. Hopkins put him through a strong regimen of chemo. We had his memorial service in May. He was 93 when he died and had lived an incredibly strong and productive life to the end. Peace, my friend.

Sent by Mary Gail Swenson | 7:05 AM ET | 08-09-2006

God bless you in your battle. You are a warrior. The comments from your wife were most welcome as the widdow of a cancer warrior I know what a helpless feeling it is to watch the daily battle. My strong man kept working until a week prior to his death. His buddy would come and drive him to his bulldozer at the work site, help him on it and wait until the pain got too bad. Then home they came. He had to get home to meet the hospice nurses! He didn't like to use a laser level and did his work by eye. When the last job was done he checked it with the laser, it was 100%.

One of the saddest days was when another dear friend, and fellow excavator, drove my love, the big truck and dozer on trailer home. Tears cloud...

Sent by Janet Lahm | 7:06 AM ET | 08-09-2006

I cannot tell you how much your thoughts and comments have meant to me. I faithfully read your blog every day. I have a shortcut on my desktop. I was diagnosed with lung carcinoid tumors (too many to count) December 15, 2005. Right now we are just waiting for them to make their next move. I doubt my decisions most days. This is so new to me. I have always mapped a course and followed it with steady steps. It seems that following your diagnosis, confidence in your ability to make the right decision is suddenly gone. I pray for you and wish you the best every day.

Sent by Joyce Cooley | 7:08 AM ET | 08-09-2006

I am so sorry. You are such a comfort. In dying, you are giving. It is what it is and they don't really know. It is an art, not a science. That is a scary thing to know. I want you to live— long. I hate cancer. In my prayers— Robin, my mom, died two years ago to today; Daddy last month. Hold on.

Sent by Robin McBride | 11:12 AM ET | 08-10-2006

Leroy,

I skimmed your older blog today. It is very difficult to read your blog as it comes to close to my life. It makes me sad to read about your situation. Also, it is a feeling of helplessness!

I lost my daughter Sonia to cancer. Her death has affected me in ways I cannot describe. There are no words to describe the death of a child. It is backward. It is out of order. It is unjust. Sad part is, we have resources to find cure, but nobody cares. As "only" 10000 kids or so die of cancer. There is not enough money to be made.

The reason I am writing is to talk about so called "battle", "war" against cancer. It is not a battle, it is just bad cards. so the person who lives, wins the battle, person who dies is a loser. My daughter who dies is a loser? In fact "hero" and "victim" in case against cancer are one and the same. The person who lives in fact has very little to do with living, and the person who dies has very little to do with it as well.

It is a social way of dealing with it. "He is fighter", but in fact there is no fight, in the situation with cancer "you do what you have to do", there is not much choice. When doctors gave Sonia a choice to "die" at 15, she was horrified by the choice. she said,"I cannot believe they just gave me a choice to die". Life is not what you do with it. Life is just what happens to you. You as a cancer person are not in a battle, as you really do not have much control over the situation. And your doctor, as you mentioned in one of your blogs,"does not know either". Medicine for the most part is a game of chance. It might or might not work. "They" never know in which case "it" will work and in which case "it" will not work. "They" get credit if by chance "it" works. Or we choose to give credit to "God". What do you attriute to "God" if it does not work. So "God" decides who should get better and who should not. Because doctors surely do not. Doctors are as limited as a car mechenic is in fixing a complex leak in your car. Only difference being you can go back to the car mechanic yell at him and demand he fix the leak, and in case of the doctor when he fails to fix his undertaking, you do not express your dissatisfaction, and do not demand to fix the "leak". What kind of accountability is this?

Going back to the "war" issue. President Nixon had waged a war on cancer, than we got busy with other wars which were more important to the "powerful people".

I almost feel obligated to say, I pray with you, but I do not, as I do not know what do prayers really do? As a friend told me a while ago,"Beena, if prayers worked, there will no body in the hospitals". All I can do is wish for a good day for you.

Sent by Beena Bawa | 4:44 PM ET | 08-11-2006

I read your last blog. It is nice to see honest/candid account. I do not see you as "victim" or a "hero". It is a socially generated need to call people, ?Hero? especially if there a sense of unjust treatment when one gets cancer. I think you are just who you are. Honestly speaking, most of us do not know you. We are reacting to ?Leroy with cancer?. ?Leroy with cancer,? who has a forum and is utilizing it. That does not by any means mean that you are not a "good" person. Incidentally, many people can relate to your forum and react to it. All that is fine. You are doing what you need to do. You are utilizing your resources and people relate to you, as being a writer your profession gives you an advantage.

We are socially programmed to treat our doctors as "Gods". We give them superiority complex and they simply enjoy it. I remember reading in your blog your reaction when the doctor said, "we do not know", notice we, and they never say "I". "we" means that collectively the medical community "does not know", and they get away with it. Here is another thing I noticed during my last twelve year interaction with doctors, "they are never wrong", and they never say, they are sorry. My daughter Sonia used to say, "fess up if you mess up"— I think they feel they are beyond it. And then Sonia died, "they" never said sorry!

People need to stop "worshipping" doctors and start listening and respecting themselves. Just because our life is at stake, and we wish they were powerful, does not really make them so! I think there are some doctors that might go beyond the call of duty but than there are plenty of those who fall short. When we are dealing with cancer, we hope we get the ones that do go beyond the call of duty, but than if every hope materialized, this world will be a different place!

Leroy, keep writing it give people a forum— it keeps you occupied, and you look forward to what others have to say! Thank you.

Sent by Beena Bawa | 8:58 AM ET | 08-15-2006

No subject off limits? Is that for you or us? Regarding your poem, our tools are pathetic! But remember the old saying "the best defense is a good offense?" The time to think about cancer is before you get it. Screening tests, exercise, weight control, fruits and veggies! We don't want to talk about these things because people might think cancer is their own fault and didn't just fall out of the sky on them.

All of the "research" is done to find a patentable drug. The drug company's incentive is to create an EXPENSIVE drug. Do you know how much your Oxaliplatin costs? (Can you tell I work in cancer?)

Thanks for putting your story out there. I like the way you think.

Sent by Lisa | 5:37 PM ET | 08-16-2006



   
   
   
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Leroy Sievers

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