It Doesn't Seem Real...

 
“I haven't bought any new clothes since I was diagnosed this time. I wasn't sure if I would ever need them or get the chance to wear them. But you can't quit. Life goes on.”
 
 

Denial is a wonderful tool. We learn that early in life. In high school, when you call up that girl to invite her to the dance and she says, "Don't ever call me again," and slams down the phone? Well, all guys know that means she really cares. Later in life, when your boss says, "You're a great worker... we hate to let you go. You're fired," most of us only hear the first part.

I'm guessing that everyone who has cancer has gone through some serious denial. I know I have. I don't look sick. I don't feel sick, except when I'm on chemo. I still walk five miles a couple of times a week. A friend recently said, "If I didn't know you were sick, I wouldn't know you were sick." So how can I have cancer?

I've seen the scans. I saw the white circle on the brain scan that was my tumor. The doctors said it was golf ball-sized, but I think they say that about every tumor. And I knew that one was there, because it made me slur my words. But the tumors in my lungs? I had no clue. Still don't.

You go at this in a couple of different ways. The first is outright denial. How can I have cancer? That's what happens to our grandparents or our parents. But it doesn't happen to us. To me. Well, unfortunately, when it comes to some types of cancer, the fact that it happens to our grandparents and our parents is one of the reasons it happens to us. Genetics. My grandmother had colon cancer. My mother had it. Now I have it.

When I wake up in the morning, sometimes, just for a minute or two, I forget. Then it comes back to me and pretty much never leaves me again. But I have no symptoms. Could it have been a mistake? A smudge on the scan somehow? They switched my scans with someone else? There has to be some other explanation.

Because when I look down at my chest, I know that somewhere in there are evil, malignant tumors that are trying to kill me. My own body is betraying me. But it doesn't seem real somehow. I'm not asking for symptoms, believe me. But sometimes it just seems like my cancer is intellectual, an idea, not something you can see or touch. But then I stop kidding myself. I know it's in there. I know that, most likely, it will kill me.

But that doesn't stop me from dreaming. I still think about things I'd like to be doing in ten years, five years, next year. I haven't bought any new clothes since I was diagnosed this time. I wasn't sure if I would ever need them or get the chance to wear them. But you can't quit. Life goes on.

Still, when a colleague of mine recently asked me, "Do you really have cancer? 'Cause you don't look like it." I was tempted to say, "No, it's all a terrible mistake. " But that's not true. I can't see it, or feel it, but I know it's in there. So I answered her the only way I could: "Yes, I really do have cancer."

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The first indication that something was wrong with my then 10-year-old daughter, Mickie, was the day my son (Jamie), Mickie, and I attended the memorial service for Pat Tillman at Sun Devil Stadium. It was hot and humid in the stands, and none of us felt very good, especially considering the reason why we were all there. I remember thinking that I just could not bring myself to give my condolences to Mrs. Tillman (Pat's mother). I just could not fathom being a parent who had lost a child.

And then Mickie developed a headache that very day that I had never seen her have before. It was a raging headache that wouldn't quit, no matter how much Ibuprofen (or anything else) that I gave her, and it was followed by severe, uncontrollable vomiting. The next day was Mother's Day, and Mickie was no better. I felt like the absolute WORST mother in the world, unable to help my child!

She eventually improved, but she would still vomit 2-3 times a week — usually in the morning — for no apparent reason. I took her to our new primary care physician, who briefly murmured, "MRI?" before the thought quickly left her mind. She attributed Mickie's symptoms to "stress". Not long afterward, I noticed that she would turn her head to look at me when I was right in front of her. When I asked her about it, she said that, "She just sees me better that way." It wasn't until I took her to an optometrist that I learned that something was compressing her optic nerve. That was a Saturday morning in July, and I spent the rest of the weekend terrified about the reasons why her vision could be affected, but afraid to share my fears with my kids, especially Mickie. By 7:30 Monday morning, I was parked in front of our primary care physicians locked office door, crying my eyes out. I had not slept for the two nights previous, and I was bound and determined not to let one patient get ahead of me that day. Mickie needed an MRI, and she needed it that day.

She did get the MRI, and the doctor left an urgent message at the end of the day to come in. When she told us that Mickie had a brain tumor, we cried, and the doctor and her staff prayed over us. Looking back, that was not exactly what I wanted a doctor to do, but it was what happened.

I took her to Phoenix Childrens Hospital, and the neurosurgeon and the Director of Pediatric Neurosurgery stared at the pictures and marveled at the size of the tumor. After more MRIs and two PET scans, Mickie had her first craniotomy about a week after diagnosis. The tumor was 7 cm x 7 cm x 6 cm, and the neurosurgeon told me that it had been growing slowly, undetected, for years. The thickness of Mickies skull was that of a three-year-old.

Although the PET scans indicated a highly reactive and aggressive tumor, the pathology indicated a high level I Pilocytic Astrocytoma. She had no radiation therapy and no chemotherapy afterward, and we all hoped that the resection was complete and thorough.

I'm sorry to say, though, that the tumor recurred and Mickie had a second craniotomy in July 2005. She lost a quadrant of her field of vision after the first craniotomy, and another quadrant after this second surgery, but she can still read (which she loves), write, and create artwork, and I am grateful for that. The pathology of the 2" tumor was identical to the original tumor. This time, we couldn't escape "adjuvant therapy," and Mickie started the prescribed sixty weeks of chemotherapy (Vincristine and Carboplatin) in mid-August. It has been harder and harder for her to tolerate, and now she has dramatic reactions only 15 minutes after the Carboplatin is infused.

If she can tolerate this awful, toxic stuff, then she might be done in October. Then we wait.

A tumor recurred in Nov. 2005, and then another one appeared about three months ago, but so far they are about a size of a pea and a size of a kernel of corn. If they get no bigger than that, I am told, she could live "decades" like that. I hope so. Mickie is so smart, so funny, and so dear to my heart. I cannot imagine my life without her, and in fact, the very worst times of my life were struggling with all the dark thoughts that invaded my mind: "how will this all end?" "Should I prepare for a funeral?" "Where should I bury her?" "Should I bury her next to her father (who died seven years ago from a heart attack at age 43)?" It has been all I could do to maintain my sanity, take care of her medical needs, keep the house and family going, and still work full-time (after all, who can live without health insurance these days, especially with a chronically ill child?). To say that it has been hard is a gross understatement. I finally made it to "normal retirement", though, and at twenty-seven years as an academic advisor at ASU, I will be ending my days here at the end of July. My clear priority is to get Mickie back to good health, and eventually, to get her to college. She wants to me a childrens author and illustrator, and I will do anything I can to see that she makes it there.

I am sorry this is long and rather rushed. I want you to know that I understand your struggle, and I will pray for a good outcome for you, as well as for Mickie and for everyone suffering from this horrible disease.

Sent by Karen Davis | 7:26 AM ET | 06-30-2006

Heard the interview today on KNPR and could not help but identifying with people who smoke. I have been cancer free for ten years now, having done four weeks of Chemo for testicular cancer and two surgeries later. One day, on my check up in between cycles, I saw a lady smoking with her IV in outside the office who had Lung Cancer. Told my doctor then, "I don't know how you can treat her when she smokes." He said, "fortunately, she's not my patient" Also, one of the nurses said, once you have the disease you have have it.

Yes, cancer does change your life, for me being 47 at the time in those four weeks, I "went through andropause" so it seemed and this usually is a gradual process for men. Some men won't admit to it, but we do.

Everthing is imporant and wonderful in life and yet it is not important, except the moment— now. I am most thankful for the care and support I received. I dealt Blackjack while during teatment which helped me in keeping my mind off the disease.

Sent by Reggie Smith | 7:29 AM ET | 06-30-2006

Fight the good fight, Leroy.

I am with you on your journey (though not a cancer patient, or a relative of a cancer patient) and place my hand on your shoulder as you move forward.

Peace to you as you find your way.

Sent by Connie | 7:32 AM ET | 06-30-2006

It is with tears in my eyes that I write to you this morning. I am sitting in my serviced apartment room in Tokyo, feeling disconnected and disoriented, missing my life as I knew it in Durham, NC! And, when I decided to go online to check out npr.org to remind me and reconnect me with my life in Durham, I got the distinct honor to run across your blog. Your words not only reconnected me with NPR and my life back in durham, but, also reconnected me with life. What point is there, I ask myself, in moping around about my disconnect from my past life, when here you are, with much to cry and mop about — living a life and continuing to give what you have to offer in your time of difficulty!

No, your cancer is real and I can not deny that you must be in pain and much anxiety and suffering the chemo and struggling with life and death... but, I want to let you know that your words have given me hope and joy and tears of praise for the work you are doing through your blog.

I will lift you up in my prayers and promise to check your words and be an avid reader of your words and feelings as you log your journey.

Keep on living, and sharing your gift of thoughts and words. Your life and your words have the power to touch many and I pray that in times of your pain and struggle with cancer, your own words and words of those who write to you and feelings of those who think about you, touch you and lift up your spirits and give you hope and encouragement.

Sent by Samruddhi Thaker | 7:34 AM ET | 06-30-2006

But you say you feel fine. Doesn't this count for anything? Most people go to the doctor because they are ill and then they learn they have cancer. Just your feeling good together with a healthy positive attitude will take you a long way. Many, many people have looked cancer directly and honestly in the eye and found a way to fight it and many succeeded. I've had relatives and friends who have, once given the diagnosis, said "that's it — I don't want to live this way" and they are gone quickly. Does this not say something about the power of thought? I've also had friends who have not feared cancer and they followed the M.D.'s protocols and found the healthiest way to survive it and enjoy life by just knowing they won the battle. Just this fighting it and winning will give you more power than you ever ever dreamed of having. Just look at Lance Armstrong for his resolve to beat the beast. He not only survived but his determined attitude helped him beat many "healthier" and younger men in more than one Tour de France race. Don't be afraid to go the distance.

Sent by Candace | 7:38 AM ET | 06-30-2006

I heard about this blog on NPR in the last week. It is very relevant to me, although I don't have cancer myself. Yesterday, I attended the funeral of a dear friend who died of cancer after being diagnosed two years ago. In January, it was decided that the chemo was not working and in the interest of quality of remaining life, it was discontinued. My friend was a brilliant psychotherapist, a vibrant individual who generously shared the process he was going through with friends, family and his clients — just as you are doing. I think he would have loved your blog I wish he could have benefitted from it. I am sure it felt risky sometimes for him to share such personal experiences, but I think he was rewarded many-fold by the love and support he received. Thank you so much.

Sent by Susan | 7:41 AM ET | 06-30-2006

If it weren't for my biannual check-ups, it would all seem like a bad dream, yet I deal with after-effects daily — mainly decreased energy. I was unable to take Tamoxifin, Arimidex or Femara, My doctor made me feel like I was doomed, so I changed doctors. It has been 5 years now and I just take one day at a time... I go from one mammogram to the next.

Luckily for me I work at a job (at a junior college) that exposes me to people with all sorts of difficulties and they are all trying to overcome them. I see their determination to change, their circumstances, their attitudes — and it helps me do the same.

Sent by Barbara Zarrella | 7:57 AM ET | 06-30-2006

I went on NPR this morning to check the local weather and discovered your blog. It is amazing how we can put everything into perspective when we read another persons plight in life.

I do not have cancer, but have experienced the deaths of family members who meant the world to me.

I wish they, or even myself, had the courage to talk about it, we never did. It was something that we were just going through and when it was over everything will be just the way it was before, even when, deep down I knew it wasnt going to be. Talk about denial.

Your blog has given me some understanding of what a person with cancer goes through — I can't begin to imagine. Thank you for putting your thoughts into words. A sobering reality for all of us who worry about the little things in life.

I wish you strength in your fight.

Sent by Janet Weisenforth | 8:57 AM ET | 06-30-2006

My beloved husband passed on after a 3 year, 10 month battle with cancer. He had prostate cancer that had spread into his bones by the time it was diagnosed. We had been married for only three months that day older people, we were in our late 50s. Your battle touches my heart. I will pray for you. I pray you have someone who loves you at your side. The decisions often take two people, I would take notes at the office visits and do web research, etc. We listed questions between visits as well. Sign up for clinical trials now takes a while. Your attitude seems healthy, keep at it. Find a way to express your emotions and people you can express them to/with. Get things ready incase you don't live long, please, don't ignore this part of it. The one who dies with the most toys leaves the most problems for his widow. If, out of love, you can help set her up for being alone do so. Having these things done is liberating. Your writing is wonderful. I wonder if you have written your earliest memories, how you celebrated your birthdays as a child, memories of your childhood years and your teen years, etc. How do you feel about your role as a man in this world? What would you tell you children about how to be an American, a Christian, a brother, a son, or a father? Leave these precious parts of yourself on paper. With you in prayer.

Sent by Janet Lahm | 11:31 AM ET | 06-30-2006

I haven't written for a few days, though everyday, before preparing to leave for the office, I check your web site and print out your latest comments. As I mentioned yesterday to a friend, who just had surgery for her own cancer, one bad thing about having cancer is being so focused on ones self — with the obnoxious feeling of being a total narcissist. Reading your column is a relief. Someone else is expressing my thoughts, validating them. I don't need to do it. And, yet, here I am, so the need isn't totally satisfied.

Yesterday the readers' comments, which I also printed out, freaked me out. Why? Phrases like a death sentence.

Though I'm no Pollyanna, perhaps I'm hopelessly naive. Anyway, as the song goes, "like a dope, I'm stuck with a thing called hope." The fact that my mother had thyroid cancer in her 40s (something I didn't know about until five years ago) and recently celebrated her 88th birthday or that my grandmother's cancer was operated on when she was 83 and she lived for another five years no doubt affect my thinking. I believe myself to be from strong stock and that WILL bear out in the end. I have to believe that. And I mostly do, though there's a niggling 3% that refuses to go along.

I continue to work. Some people are amazed that I put in 40 hours a week. Or that during spring quarter I put in 40 hours a week and also continued to teach and to take a class. But that's my life and my joy. Who would want to sit at home and wallow in a muck of gloom? Being around people — especially students — and their 'joie de vivre' is contagious.

From time to time I wonder what I would do if I were told — like you — that I only had a certain number of months to live. Since I love to travel, would I want to do that? I'm not sure. I don't think that would be so fulfilling. I think that I would want to try to find some way to spend my time giving to others... to have a sense that I'd made a difference in the world, at least in some small way.

Mr. Sievers, I'm not sure how to say this. You are in my prayers, and I hope that you will still have a chance to live out your dreams. In the meantime, I thank you for your column — you have made a difference in my life.

Sent by Shosh | 11:35 AM ET | 06-30-2006

At this moment my father is in the hospital struggling through what seems to be the final days, weeks or months of a two year battle with cancer. After two rounds of chemo, radiation and countless surgeries his body is giving out and there's nothing left to do but be there. No words can express what this is like, for us, or for him.

Over these many months I've often wondered what he's thinking and feeling. He'd been honest when I asked, even if the response was less than pleasant, but I still felt disconnected. There was always something in his eyes that I could only interpret as private pain he couldn't, or wouldn't, share. Reading your entries brings me closer to what he's experiencing, and I feel just a little less helpless and a little more comforted knowing he's not alone in this fight. Hearing personal accounts from someone going through this at the same time is somehow a relief. Thank you for that.

I wish you and your loved ones well in your journey.

Sent by Heather | 11:38 AM ET | 06-30-2006

I am pleased to welcome you to this journey. I am sad you are having to make it. I recall the chapters falling in place as I read your reflections—

*Who to tell, what to tell.

*My body, my cancer — two entities, yet one.

*How wonderful, how fragile, denial.

*Stupid, wonderful caring people, my friends, my family, my medical team.

*The marvelous mundane of everyday life.

*Coming to grips with words like fair and deserve, then banning them from my view of life.

*How angry I am how blessed I am.

*Diagnosis stopped my life, diagnosis reopened my life.

*The privilege and intimacy of listening to such a personal story.

My cancer story began 25 years ago with a mastectomy. I have been fortunate. I was the mother of a four-year-old and wrote the story from her perspective (which I will share if you wish). At 31, she and I both keep watch today, celebrating each clear report. I currently work with children and families who have had family members die. It always feels strange to see my worst fear lived out for other families day after day.

Thank you for sharing your story.

Sent by Virginia Giannotta | 12:15 PM ET | 06-30-2006

Leroy,

After discovering your story only 2 days ago, I have become a committed fan. You do express aspects of this disease process very clearly, and say things that many of us have experienced. So, keep it up.

I was diagnosed with Stage 4 metastatic lung cancer the same week as was one of my favorite news people, Peter Jennings. He is gone. I am still doing well. Who knows what makes the difference? My radiation and chemotherapy paths have been surprisingly smooth and present scans indicate a lack of activity in my tumor sites. Yet, we all (all in the cancer club) recognize the need to acknowledge that we are living on the edge, not to fully embrace that we are in some way "beating" this thing called cancer. In fact, it is very important to be aware of the fragility of our situation and the true touch of mortality that we now live. It helps me to hold on to that truth, even as I do very well with the ongoing therapy and the disease.

It is amazing how one quickly finds others within the "club." While skiing in Colorado to celebrate the one year anniversary of my diagnosis, I found myself beside a stranger on the lift. I mentioned briefly that I was celebrating by skiing that day. He asked how. Both of us were skiing after serious cancer diagnoses and subsequent therapy. We made a brief 5 minute connection, deep and meaningful, because of our appreciation of one another's journey.

The networks of people we have in our lives sustain and support us in so many ways. You are building another such web of people. So, celebrate each day we have with all of those around you. And keep up the writing. You are good at the process of living this disease and teaching others about how to do it.

Sent by Robert Feigal | 2:09 PM ET | 06-30-2006

Watching my mother go through a very rare form of cancer, sarcoma, I can totally relate (as can she) to most of what you wrote in this post.

The most poignant part? The part about not buying clothes. It was almost eerie to see that in print, because my mom said those exact phrases often.

We are now at the winning end of this battle. Surgery removed her entire tumor, and she is finishing up with her radiation as I type this.

She is the strongest woman I know, and while cancer is a scary prospect, it is strangely comforting knowing that we don't have to face it alone.

You may have cancer, but cancer doesn't have you.

Fight on...

Sent by Lisa | 6:32 PM ET | 06-30-2006

Leroy,

It's funny that you mention denial, and not wanting to buy any new clothes in sequential paragraphs.

After being scheduled for a total removal of all female gynecologic plumbing (TAH-BSO, as the medical world calls it) to treat my advanced ovarian cancer in March 2006, my first thought turned to clothes. Working in either engineering or engineering management for the past 26+ years, my wardrobe included nothing (beyond PJs) that would be considered comfortable enough to wear home from the hospital or for recuperation. Sure, I had fitness clothes but, even they were not sufficiently forgiving. Plus, I decided that I "needed" to buy some fun sandals to cheer me up.

More recently, the spring/summer sale notices began arriving from my usual clothes haunts, in conjunction with the application for long term disability insurance benefits. I have been tolerating my chemo and clinical trial drug well and the combination has been very effective at the midpoint check (according to CT scan and CA125 blood marker results). Therefore, my optimistic plan A has been - spruce up the wardrobe for back-to-work, and file the applications as a backup plan B. And, why not? Even though the statistics are not favorable for long-term recovery, there are always individual cases, and exceptions. Plus, I keep figuring that there should be some residual benefit points from all of the "right" health habits of the past 30 years - relatively healthy diet, regular exercise, multi-vitamins, calcium supplements, wearing sunscreen, and flossing every day.

That is, until I read the social security list of cancer conditions that automatically qualify one as disabled. Wouldn't you know... I am on that list. What to do now? At 54 years of age, it hits me like a truck that the government thinks I ought to take my retirement years now, since in its estimation my condition is "permanent or expected to result in death." I start to wonder whether clothes shopping to implement plan A is my own form of denial. Or should I anticipate a lengthy plan B retirement and transfer my denial to modify my wardrobe looking forward to a next phase of my life, giving me more time to spend devoted to my terrifically supportive husband, grown sons, parents, extended family and friends? If this is denial, I'm not sure that I see any negative side. So, I still have those sale notices to look at.

I continue to look forward to reading your blog every day for a long time.

Sent by Sheara Whalley | 6:35 PM ET | 06-30-2006

Dear Leroy,

I am grateful that you are sharing your cancer story. I work with a woman diagnosed with metastatic breast cancer. Her struggles are both significant yet ordinary. Symptoms come and go as treatment changes. The ongoing nature (long-term low-grade suffering mixed with serious bouts of extreme illness) of cancer is the most surprising to the uninitiated. I am grateful for the knowledge of your difficult journeys. This knowledge helps develop empathy and compassion - we can sympathize and understand more fully when we know the true nature of the struggle. God bless you both. I am praying for you.

Sent by M. Olsen | 2:13 PM ET | 07-01-2006

My son who just turned two in May was diagnosed with acute lymphocytic leukemia on February 25th of this year. The past few months have been the hardest of my life. My husband and I suffered three miscarriages trying to have our Donavynn! I was so angry and devastated. I couldn't believe that God could allow this to happen and that he was testing us yet again. I felt like he said " Well you didn't want to take no for an answer so here he is, but you can only keep him a short while." I've never hated God so much. The next day I went to the chapel in the church, and I had a good long talk with God. It made me feel a little better. I guess after doing some thinking I came to realize that it wasn't his fault...and I asked for his guidance and help for our family in getting through this. I wished with everything in me that it was me that was sick. How can a 21-month-old be so sick? He had a few signs: loss of appetite, bruising and later, pallor. But no fatigue, nor pain nor illness. Still my gut said something was wrong. And when his pediatrician basically told me that I was neurotic, I was angry, and two days later, my doctor did some blood work, because I wouldn't let it go.

Since diagnosis he has had only a few bumps in the road, only a few hospitalizations, one of which was for an allergic reaction to one of his chemos (PEG asparignase). I don't think I'll ever forget that night. As soon as we got home from the hospital, his face just blew up. The epipen that I had just received that day and prayed I would never have to use probably saved his life. After a long evening in our local ER (the ambulance sent from Childrens Mercy had car trouble) the helicopter flew him to Kansas City. My daughter insisted on going with us to the hospital and she said something that touched me so deeply. With tears streaming down her face she said "I wish it was me that was sick mommy, I'm stronger than he is. This isn't fair." I wasn't exactly sure what to say to that. She is only 8 and I knew she loved her brother, but I never realized how much.

I read in one of your blogs that you don't feel sick. That is how it is with Donavynn. People don't know he is sick unless we tell them. He has only lost a little hair; in fact, he still has more hair than many kids his age. He is full of spunk and energy. He has more energy than I do on any given day. And he is always so happy. The only way I know he is sick is his appetite. He doesn't eat the things he used to love. There are days when all he'll eat are pop tarts and cereal bars. This concerned me but the doctor said as long as he is eating, that is what is important.

I am doing better now that he is doing ok. I thank God for every day with him and continue to pray that he stays in remission. But still there is a part of me that seems dead. Things don't make me happy like they used to and I feel so alone. I don't feel like my husband gets how I am feeling. I'm sure he is just dealing with it in his own way but this has definitely put some distance between us. I feel empty and broken and I don't know how to make him understand that. The only thing that I do know is that I would take Donavynn's place in a heartbeat. He is only 2, he shouldn't have to fight such a big battle at such a young age.

That is all for now, thanks for listening. It feels good to get that out.

Sent by Serena Cronk | 2:22 PM ET | 07-01-2006

Hang in there, Leroy.

Sent by Scott Goodwin | 2:29 PM ET | 07-01-2006

I will continue to write everyday to send good thoughts. May you also enjoy as much peace as possible on your journey. A song for your heart (insert your own favorite here)....Be well.

Sent by Sandra Yudilevich | 2:30 PM ET | 07-01-2006

Thanks so much for sharing your journey. My mother had her first cancer at 53 - and ultimately died of cancer at 67. I remember looking at her at the end and saying to myself "If you want to do something in your life — dont waste any time. Tomorrow is promised to no one." Six weeks later, I had left the business world and was in graduate school. I have had a very rewarding professional career since that time. But, that nigglling feeling about time is always with me. When I turned 61 and my husband turned 60 - I had a discussion with him about marking the days. So, I calculated how many weeks I would live if I lived to be 90 (optimistic? denial?) and it was 1508. I ordered 1500 colored marbles and put them in a large beautiful vase. Each week, we move one marble from the vase into a heart shaped bowl. Then we ask ourselves — have we really lived this week? What have we done (excluding work, work, work) to enjoy it. It brings to us a growing awareness that there is more time behind us than in front - and admonishes us to live each day. I wish the same for you.

Sent by Diane Valentine | 2:32 PM ET | 07-01-2006

"That Day" in my life occurred in May of 2005 when my wife was diagnosed with inflammatory breast cancer. Nothing has been the same since for her, myself or our children. This type of breast cancer is as bad as you can get.

She has a team of great doctors, and medications are coming on line as she needs them. After over a year of chemo and two rounds of radiation, the disease still has not been tamed. She's fighting the greatest fight of her life, and at 51, is not ready to throw in the towel just yet.

I'm happy to have found your blog. It makes me understand her situation in a way that I would not have otherwise.

Best of luck to you.

Sent by Mike Rupert | 2:35 PM ET | 07-01-2006

Just found your site looking for Wait, Wait, Don't Tell Me that I missed this a.m. I heard Mr. Sievers last week on Morning Edition and was immediately sympathetic. What do you say when people ask how you are doing?

Our son was treated at Hopkins for non-Hodgkins lymphoma in 1983 at age 9. That was 2.5 years of living in what you call the parallel universe. He is 32 and just sent us a picture of him skiing in snow at 11,000 feet last weekend in the backcountry of Yellowstone in short sleeves. Every event, picture or phone call is considered a gift and a blessing that he is alive and well. Hopkins is a phenomonal healing center and the place to be with cancer.

My comment is that I found that well into the treatments he received every 3 weeks, that was our total focus and when people asked how he was or how we were doing - it was hard not to limit our answers to the fight we were waging. But at some point, I raised my head a little to look around and realized I was too comfortable remaining in that victim mold. It felt good to receive friends' sympathy and good wishes and of course, we certainly needed them desperately. But it also became my determination to have us viewed as the people we had been before that anvil came out of the blue sky and hit us on the head with the diagnosis. It may have been neccesary to wallow in that victim state but it also felt good to let some of it go and be viewed the way we all were before.

His successful treatment was part of a Clinical trial. We felt we were on the cutting edge of the best treatment they knew to do.

I write today as a lung cancer survivor myself; an operation in 2000 and two operations in 2005. We all have our stories, our fears and our regrets. I will keep Mr. Sievers and his family in my prayers - I know they have helped our family to endure more easily.

Wishing you courage and comfort in the days ahead - and, for sure, healing.

Sent by Sara Lyons | 2:38 PM ET | 07-01-2006

I, like most others came upon your blog randomly. Your words are an amazing source of comfort - our thoughts are so similar. I struggle with denial, find myself not telling most people that I have cancer. Because, after all, I'm not dying of cancer, rather, living with it. I too work 40-50 hours a week, feeling healthy most of the time. At times, when the bottom falls out from under me and the bruises start to multiply, and food no longer tastes good, those are my reminders that all is not well. Going to the doctor is something I try to avoid. In this world I can pretend to be normal and healthy. In the world of hospitals, those illusions are shattered. On one hand, I'm not as sick as many of those folks, which is a mental boost. On the flip side, someday that could me. Everyday presents itself with new challenges. But everyday, everyone's life is a challenge.

Thanks for sharing yours.

Sent by Apryl | 2:41 PM ET | 07-01-2006

Hey, Leroy:

Thanks for having the mental grit to share this with the world. My father died last summer from who-knows-what-final-blow, after 5 years of various cancers, mostly esophageal.

Sincere congratulations on having the good fortune to be feeling well, and happy with and confident in your medical care. I'd like to suggest that, when you're up to it and looking for material, you spend some time with and/or talking to some folks who are pushing up against the barriers of general poor health and the average (mediocre, infuriating) health care that average people get all over the country.

My father was a very bright man, and mentally acute at the onset of his illness. His widow is an intelligent, organized and assertive person who struggled to get their questions answered, but too often the various health professionals in charge of his treatment would be unavailable to her, **and to each other**.

It still chokes me up to consider how his final couple of years on earth were unnecessarily filled with medical mishaps and suffering. And his situation was **so damned typical!**

Anyway, my best wishes to you for the strength and support you'll need in the days ahead.

Tegan Dowling

Sent by Tegan Dowling | 2:44 PM ET | 07-01-2006

Hi Leroy - In two days I go back for chemo after a nine year remission with non-Hodgkins lymphoma. Sneaky little disease, isn't it? I'm only 59 so I have claimed my cancer and am determined to get at least another nine year remission. I guess that I like the bald look after all. Hang in there. As the Lakota Sioux used to say each day before they would go out to battle: "This is a good day to die." I guess that's not a bad philosophy for everyone, not just cancer patients. As Kurt Vonegut said: "Hi Ho!" I will look forward to your blog. It's always nice to know somebody else is out there going through the same thing.

Peace, Ken Kent

Sent by Kenneth Kent | 2:47 PM ET | 07-01-2006

Please know what courage I see in the words you let go into the world...such a beautiful voice to cancer. I hope you go shopping for clothes soon. I hope I see you running around Nordstrom's Anniversary Sale in mid-July like a wild teenager at a summer concert.

With care & love from a reader/listener.

Sent by Teresa Libera | 2:49 PM ET | 07-01-2006

You are not alone. I too have a cancer that relapsed after 6 years of remission. I have leukemia. I just finished 4 months of chemo and am going for my PET/CT scan in 2 weeks. Hopefully no more chemo, and I have been developing fevers and infection, which is what usually kills people with CLL. In the outside world people tell me..."But you don't look sick?" Well, thank goodness for that! Does that make them less empathetic? Should I "make" myself look sick so that when I am weak, fatigued or in major pain, they could "see" it? I hate to complain, denial is a much better place for me. By the way, FYI there is a website that has been very helpful to me, it is called: butyoudontlooksick.com. There are many people that are very ill, but you would never know it by looking at them. I wish you well, and keep up your strength during treatment! Know that you are part of a greater family, and I'm glad to be a "Sista-Soldier."

Sent by Teri Kennedy | 2:51 PM ET | 07-01-2006

After reading your article in the newspaper today, I am praying for your healing and recovery. FYI, while praying today, I felt in my heart that you will be healed. Have faith and believe that God will heal you. Your writing is doing wonderful things for the cancer community.

Sent by R.M. Leary | 2:58 PM ET | 07-01-2006

Leroy,

I've followed your career off and on through the years, and your successes have made me enjoy my recollections of our childhood friendship even more.

I'm sorry to hear of your cancer. I recently completed the Volvo Ocean Race as navigator on ABNAMRO One. A close friend, Hans, was lost overboard on our other team boat, ABNAMRO Two. Letting go of Hans made life seem both precious and fragile.

Thanks for your efforts through the years trying to keep substantive content in the media.

Stan Honey

Sent by Stan Honey | 2:59 PM ET | 07-01-2006

I asked myself why I was writing these comments, as I don't have cancer, nor do I have anything important, clever or different to offer. But it occurred to me that it had more to do with relevancy than anything else. I lost my mother to leukemia last September and recently found out a dear friend has cancer. Perhaps I'm just more attuned to this illness now. At any rate, I just felt the need to reach out and somehow connect with you, to tell you how proud I was of another human being and his decision to share life-threatening news with the public in such a simple, direct and honest way. I know that you are helping others to deal with cancer, as they in turn are helping you. After all, isn't that what life is truly about? My prayers go to you, Leroy, and to everyone with this disease. You are your own best friend — listen to your body and keep the faith.

Sent by Pam Wasko | 3:00 PM ET | 07-01-2006

I have just completed my chemotherapy for breast cancer. I can't help but feel pretty optimistic and proud of myself right now. You remind me that as well as I feel (and you feel), cancer still sits over our heads like a raindrop waiting to fall (the image I had when a friend was diagnosed shortly after I was). I know intellectually that anything can happen. I can be any kind of statistic. If not for a dose of denial, how could we go on?

Halfway through chemo I was in a qi gong class and, for the first time since my diagnosis, had a strong voice inside me say, "You're going to be fine." It felt so clear and peaceful. I don't know what it means in the long run. I just know that, somehow, I'll be fine.

I thank you for sharing your days with us.

Sent by Julie Orfirer | 3:09 PM ET | 07-01-2006

I just read some of your blog. I'm thankful. My grandmother was just diagnosed with cancer 6/30/06. She's so independent, she still works 3 days a week, goes on vacations and hangs out with her girlfriends until 1:00 a.m. on "movie night." I don't care that shes 85. It doesn't make it easier to accept.

I wonder what's going through her mind. I'm sure shell be experiencing some of the same feelings you describe.

She's a retired nurse. She's so strong and so stubborn.

I'm a nurse and I feel lost! Weird. I'll be caring for her. I don't have a clue what to expect.

Keep up with your blog so I can soak in your experience and gain knowledge. Maybe then I'll have a better understanding.

I wish for your recovery and acceptance of the uncontrollable.

Andrea

Sent by Andrea Derrick | 3:11 PM ET | 07-01-2006

I am inquiring about Mangosteen, I have lung cancer and someone mentioned using it.

Sent by Angelica Hansen | 3:20 PM ET | 07-01-2006

Leroy,

Once upon a time... I heard, overheard, or thought I heard, a line from George Carlin: "I like it when a flower or a little tuft of grass grows through a crack in the concrete. It's so f***in' heroic." You, Leroy, are my tuft of grass. I found your website purely by accident. And now, I look forward to starting my day with you, and reading the beautiful comments shared by you and your readers. Yes, I too have been diagnosed with CA. Choroidal melanoma, with a 60% mortality rate within the first 10 years. I was diagnosed in 1998, and while I am symptom free at this time, I often feel like I have a loaded gun always hovering over my head. My type of cancer is extremely rare, one in a million, or so I'm told. Once the cancer metastasizes, there is neither treatment nor cure. My husband was diagnosed with lung cancer and died only 3 months later from his cancer. He was only 48. I took his diagnosis and subsequent death much much harder than my own diagnosis. Believe me, I am no Polyanna, that's for sure. I do try to make the most out of each day, and (REALLY) appreciate each day I remain symptom free. I thank you for your willingness to share your thoughts, and I leave you with a Chinese proverb: "My barn having burned to the ground, I can now see the moon."

God Bless, Arleen Sinon

Sent by Arleen Sinon | 3:26 PM ET | 07-01-2006

Leroy, buy new clothes! I felt almost the same way. I was losing a lot of weight, and I secretly enjoyed losing it. I was overweight anyway and all my life tried to lose weight. Then I managed to get into a size 10, 8 months ago, I was a size 18. I loved being thin and didn't want or care to know why this was happening to me. Then the symptoms started, I couldn't swallow a lot of foods. BANG! Esophageal cancer. Anyway, at first I thought I'm not going to buy any new smaller size clothes, but my reason was that once I get over this I'll gain the weight back and the clothes will be for naught. In your case, you need to have new clothes now for the pick me up, and you'll always need them later. You are in my thoughts and prayers, hang tough.

Sent by Ruth White | 3:45 PM ET | 07-03-2006

It's 6:49pm Friday, August 22, 2008 in San Antonio, Texas. Yesterday, and it seems like eons ago, my wonderful daughter in law Beth called to say my son Dan, 51 years old was beginnig the dying process. I've lost both parents, two husbands, but NEVER, NEVER a child. Regardless of his age, he is still my baby. I spent the month of June with him and even then the pain was unbearable for all of us. I am not sad he will be out of pain, my sadness is the Mother's job to kiss it and make it better and I can't. No amount of bargining, has worked. He will be free of pain, but how long does it take for me??? Selfish, I know that...I guess I heard of this blog on TV tonight. I seem to feel comfort in Randy Pausch and now your husband. Thanks...and you are in my prayers, maybe we can "lift each other." a mom

Sent by Linda Hyde | 7:57 PM ET | 08-22-2008



   
   
   
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Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

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A journalist for more than 25 years, Leroy Sievers worked at CBS News, the Discovery Channel, and ABC News, where he was the executive producer of Nightline. He wrote this blog daily until his death in August.

 
 

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