Leroy,
For certain, we put on a good front for those near us. And for certain, even during times we feel horrible. It is a struggle everyday, to be positive and upbeat. We seem to be the hardest on ourselves. Inevitably cancer patients take on the woes of everyone else.
We have to continue the struggle to be ourselves. You have to tell us just how you feel. That is why we are all here. We get the concept of horrible days. It's o.k.
Prayers.
Wanda Amorose

Sent by Wanda Amorose | 7:11 AM ET | 06-02-2008

Leroy,
There are days that I feel "good enough" to put on a happy face. There are days when I just can't muster up the energy. I do try and be honest, and I guess, like others, I fake some days. It seems to make me feel better when I'm able to do that. God Bless you, my friend.
Jerry

Sent by Jerry Borror | 7:26 AM ET | 06-02-2008

Amen.

Sent by Lisa | 7:30 AM ET | 06-02-2008

Leroy:
Being honest with yourself, and with the world, is one way to heal faster:

No goals, no expectations,
Whatever is, is.
For now.... Just Be.

No future, no past,
Just the present.
For now.... Just Be.

Love, Don

Sent by don winslow | 7:45 AM ET | 06-02-2008

That says a lot Leroy. I really believe that most people fail to fully acknowledge how they are feeling most of the time, because we think that the person inquiring is just following social amenities. I don't remember who I got this response from, but when some asks how I am I tell them unless it is someone who is close to me I respond, "Upright, functional and taking nourishment, thank you" Stops them cold, they think, and then the usually smile and maybe even laugh.

I love watching them process the information. ;) If my friends ask, I am honest with them, because I know I would like them to be honest with me.

Sent by Sue Chap | 8:05 AM ET | 06-02-2008

Having another bad day here but prayers to everyone. God Bless us all.

Sent by sasha321 | 8:11 AM ET | 06-02-2008

life is tough for all of us - moreso for those with cancer, i am certain. they say that a positive outlook can help one stay healthy - BUT if you feel like cursing or using your middle finger more than usual - IT IS YOUR RIGHT - and the one emotion you never seem to say or I have missed is fear of the unknown - but as usual, there are lots of prayers going out to you.
love, jan

Sent by janice goldberg white | 8:11 AM ET | 06-02-2008

Right on Leroy! Sometimes I realize that I am putting on that happy face in front of my oncologist- maybe the thought that if he likes me more, he will try harder to keep me around plays a role. There are a limited number of people who I feel I can be honest with.

Sent by Susie R. from OH | 8:20 AM ET | 06-02-2008

Good Monday Morning Leroy! It is a sunny morning and truthfully, I feel pretty sunny. Had a good nights sleep and my husband only got up three times last night. Yea! No one should pretend for anyone here in your blog. That is the purpose for it being here. To be honest with each other and support each other as we go through what the cancer world throws at us. My thoughts and prayers are with Ted Kennedy as he goes under the knife today for his brain cancer. It is almost the Anniversary of his brother Robert's death, so the family must be going through a terrible time right now. Regarardless of how you feel politically, he is a good American and no one should say "he has had a l o n g life" and should be ready for what comes. NO one's life is long enough when they still have things to accomplish and enjoy family and life. So much for this horrible disease!

Sent by J C R | 8:26 AM ET | 06-02-2008

For anyone who didn't click on the link to the New York Times article, go back and read it. It's a pretty accurate description of many things Leroy and others have said here for the past year or so. It was great to see it in such a mainstream place as the NYT. And there was a nice shout-out to Leroy's blog! The article echoed many of the sentiments in a book that I recently read and heartily recommend, Five Things I Didn't Learn from Breast Cancer, by Shelley Lewis.

Sent by Gretchen Hoag | 8:27 AM ET | 06-02-2008

Sasha,

My prayers are with you through this time. Allow yourself you feelings and tears, they are real and should be dealt with.

Sent by Sue Chap | 8:40 AM ET | 06-02-2008

this is one of my personal favorites:
"If only we could stop trying to be happy we could have a pretty good time"
Edith Wharton
sarah

Sent by sarah cronkhite | 8:50 AM ET | 06-02-2008

Praying for you and your family, Sasha. You are in my thoughts.

Sent by Jen | 8:51 AM ET | 06-02-2008

Dear Leroy,

You are absolutely right, I remember the first thing a friend said to me after my diagnosis was - don't wallow in depression - and I hadn't even cried yet! We don't always have to brave little troopers. Cancer is scary, depressing and painful, so if my attitude one day is making someone else uncomfortable - well tooooo bad.

May you have more good days than bad,

Lianne

Sent by Lianne Friedman | 8:52 AM ET | 06-02-2008

Hello Leroy...thank you for the topic and for including a link to the NY article. As I read it, it occured to me that we (as a nation) seem to expect stoicism when faced with cancer and, in some cases, death...the words about Ted Kennedy brought Jackie to mind; her reaction to her husband's murder became a model for grief.

It also brings to mind the knight from Monty Python who encourages us to face the worst injuries as though they are "just a flesh wound".

Sent by Peggy | 9:03 AM ET | 06-02-2008

Shasha: I have been checking every day for some message from you. I am so sorry you are having a bad day and will continue to hold your family and you in my prayers. The article in the NY Times reaffirms for me that "My Cancer" is the best help available. As soon as I meet people who are dealing with cancer (family or patient), I write down "NPR/Leroy Sievers." It should be required reading because it is a collective voice of truth.

Sent by N.Holmes | 9:16 AM ET | 06-02-2008

Amen Leroy.

Judy

Sent by Judy Voller | 9:18 AM ET | 06-02-2008

Amen! I think we all are subject to that "Attitude is Everything" bit. And of course, a positive attitude CAN sometimes make a difference. But facing the truth and being honest with ourselves matters most. Anyone struggling with advanced cancer -- a likely death sentence -- while undergoing treatments that can often be miserable is bound to feel sad and depressed and afraid sometimes. What's great about this blog is that we can all come here and share our feelings, on good days and on bad days. Thanks, Leroy.

Sent by Doris | 9:38 AM ET | 06-02-2008

Yes, I sent out that article to everyone I know, it said so much. There are so many days where I just feel lost and confused, but feel I have to keep up. Cancer never leaves my mind but then I'm lucky to have health care and lots of people who love me.

Sent by Elisabeth Dyer | 10:13 AM ET | 06-02-2008

Dear Leroy,

I remember sitting in the oncologist's office with my son one day and I had picked up a magazine to read and there was this article in it that was titled, "When did I lose my right to have a bad day". It was written in humor and I laughed out loud reading it. She talked about how now that she has cancer, she no longer can complain about having a headache or that she just woke up on the wrong side of the bed that day. She wrote it's ok for her to have to listen to someone talk about what a bad hair day they are having (while she is bald!) or someone talk about how tired they are, but the minute she says anything negative, everyone around her just kind of pats her and says, "now, now, you have to remain positive". She put a few words in there that I can't write and said, "when did I lose my right to have a bad day?!!"
I laughed out loud because it's so true. No longer can patients and caregivers have bad days because everyone tells us that we have to stay upbeat, we have to stay positive. Now, I don't disagree that we have to stay "positive", but sometimes we too still have the right to say, "life just sucks and today I'm tired of hurting, or fighting, or whatever...today, I'm having a bad day".
This almost goes along the same lines as a patient in the video "The Truth about Cancer" that aired not too long ago. She was talking about how if she wasn't willing to do another treatment, then everyone thought she was "giving up" or she wasn't "living strong". While she wasn't speaking bad about the "live strong" campaign (and I'm not either by any means-his books helped me through some very tough times) she said that sometimes she feels bad because maybe she's not thinking positive enough or she not fighting hard enough because she still has cancer-there was no cure for her, she knew it, yet there's this notion that so many people now have that if you're just positive enough, if you pray hard enough, if you're "strong" enough, you'll beat it, but reality is, sometimes you don't.

While I am one of the biggest advocates for "hope" and "living strong" and "staying positive", there needs to be something that lets others know it ok to have bad days, it's ok to not fight anymore, it's ok to enjoy what time you know you have left...enjoy it without the doctors appointments, enjoy it without the treatment side effects. I didn't find out until after my son had passed away that, 5 months earlier he had talked to one person about quitting school and just traveling the world and seeing as much as he could see. He said he didn't think he could do that though because that would make it seem like he was giving up. That made me sad. He deserved to travel, he deserved to see as much as he could. It made me sad that he felt like he had to stay positive and keep fighting until the end.
I wish for one more day to go back and say, "lets have a crappy day, cut school, skip the doctors appointment, skip treatment and lets just have today to either sit around and cry about what's happening to you, or forget about it the best we can and do something we never would have done before." I already know we wouldn't have sat around crying, but I would love to have just one more day with him where I could if I wanted to.

But back to the real world. Today, I'll stay positive that "he's in a better place", I'll stay positive that "he is no longer in any pain". Today, I'll dry my eyes before I leave the house so that everyone will see that I am still "living strong" and today I will put a smile on my face so that everyone will "know" that I'm healing. If I just stay positive, it won't hurt so bad, right?

I apologize, this hit on a nerve with me, I too wish everyone more good days than bad, but I also wish for each of you to have the right people around you to say...you're right, sometimes life sucks and is unfair...do you want a punching bag or a bowl of ice cream?

Sent by Rhonda | 10:21 AM ET | 06-02-2008

Amen, Leroy. No pressure - oh that it were that easy. We attended an event this past weekend where we saw some former co-workers who hadn't seen my husband recently. He's in remission and looks pretty good right now - so all just assume everything if fine. One commented "so the cancer is gone?" and my husband responded "yes". He has opted to take that high, positive road with everyone while I wanted to say "no - his cancer in incurable; we're just enjoying these days until it returns". But they didn't really want to hear that; so I kept quiet and averted my eyes so no one would see what I was feeling. I've learned that - like Susie R in Ohio - there are very few I can be totally honest with. Most just really don't want to have to deal with that honesty.

Sasha: you're in my prayers

Sent by Dianne in Nevada | 10:24 AM ET | 06-02-2008

Maybe we need to create a Twitter account where we can send our negative thoughts...
direct all of our anger and sadness into the void... we feel better (hopefully) and we protect out friends and family from any more doubt and sadness.

Sent by Brit | 10:30 AM ET | 06-02-2008

Falling down isn't the fun part of learning to ride a bike, but it is necessary, as is indulging a good wallowing to retain an otherwise unsustainable upbeat facade. Healthy grief management might be more art then skill, and it is not always pretty. Fact is most people can't handle grief but they can creatively learn a wobbly balance. Talking and getting help are our training wheels.

Hold Fast & put a baseball card in your spokes.

Don MacLeod

Sent by Don MacLeod | 10:31 AM ET | 06-02-2008

Not only are cancer patients expected to put on a happy face, but us caretakers are also expected to do the same.

At one doctor visit, my doc told me that she didn't think I was "cheerie enough" for my husband. And prescribed anti-depressants! My husband has Stage IV cancer and I'm not "cheerie" enough??? Neither my husband nor I believed that I was clinically depressed (or even "blue').

The pressure to "fake good" exists pervasively in society, including on this blog. I often see commentary chiding you, Leroy, to be more cheerful as if cherriness somehow makes it all better and is indication if you're fighting "enough".

I've been told that I need to believe in miracles, that appearing more "happy" will make my husband live longer, etc. Bull!

It's life. Some days are good, some are bad. We enjoy a good sunset and a shinny full moon and really good dinner. On the other hand, I get annoyed when people ask for a commitment for an event that's months and months away because who knows if we'll make it? And then they seem annoyed that I have reminded them that John is terminal. NMP - not my problem.

My goal is to enjoy every moment I have with my husband and also to feel all there is to feel. I don't want to miss a minute of our time together, good, bad, ugly. Life is the full meal deal. You can't always just order the fries and a milk shake.

Sent by Ricci | 10:43 AM ET | 06-02-2008

There is so much to this that it is hard to make a concise response. I've been lucky (graced) in at least four ways. My caner (brain) hasn't hurt or debilitated me greatly in the 1st 1 1/2 years; I have a great support community who ubnderstand the disease more than most; I started with resolve; and the symptoms haven't worsened.
But, like all of you, I feel the expectations constantly - from, I must say, the cancer community as well. Sometimes I have hesitated to write because I seem to be doing so unfairly well. sometimes because, doing well, I feel I am not doing enough. I spent the first part of the morning puzzled over which of many activities I should tackly first - cancer -related; wobbling about on my new bike or the other areas of my life. I ended up doing this. Ultimately I agree woth you and others. Leroy, That honesty without wallwing or compulsivity (I can only hope!) is the best expression of a positive approach. It's a great gift to be who we are despite all the expectattions we and others lay on ourselves (including gud speling).

Shalom

John Shippee

Sent by John Shippee | 10:55 AM ET | 06-02-2008

Leroy,

Right on.

Blessings.

Sent by Diana Kitch | 11:12 AM ET | 06-02-2008

I'd like to reply to Rhonda: I'm so sorry for the lost of your son. I can't image any other situation in life as painful as losing one's child. Even though I've been diagnosed with three cancers(melanoma, breast and lung),I often say to myself that I'm fortunate because I've lived my life. I've raised my family and now have grandchildren but someone as young as your son was just starting out.Please for anyone out there getting ready to reply that I shouldn't feel this way that I still have a lot to live for...don't. I know all that but my feelings are what they are. I feel very, very sad for the kids and young people who must cope(or succumb)to cancer. They weren't even given the chance to play the silly "happy face" games for very long.
Cathy

Sent by cathy itri | 11:45 AM ET | 06-02-2008

Leroy, once again you hit the nail on the head! Most friends are wonderful and understanding, but there are some who I quickly learned do not want your honesty. They want small talk and smiley faces; and they skidattle if the honesty becomes uncomfortable for them or pulls at a heart-string. And there will always be those with the, "if life throws you lemons--make lemonade" mentality. Some days, it kinda makes you want to slap them! :-)
God's blessings on you all today.
Today, Dad had the CT scans that will tell us how the first half of his six chemo treatments are doing in the battle for more time they are waging against the cancer beast. We'll find out next Monday.

Sent by Linda Lee | 12:17 PM ET | 06-02-2008

Trying to maintain a positive outlook may or may not affect your outome; but I know for sure being positive will make your life and those around you better.

Sent by cv | 12:32 PM ET | 06-02-2008

Leroy - Thanks so much for sharing the NYTimes article. I would have missed it otherwise and it was a helpful article.

I liked this particularly:

"His awestruck friends would say, " 'You're so brave, I don't know how you do it, you're my inspiration.' They would put me on a pedestal," Mr. Wickman said. "That doesn't allow me to be human and in pain, angry or depressed."

I've recently been becoming more open and honest with close friends and family members and admitting when I feel like dirt, when I feel angry, when I feel "scared", when I just plain don't feel like being brave or strong. It's so tiring fighting.

I was doing the same thing that Susie R mentions above - putting on the happy face - even for the drs. I've recently stopped doing that. At my last visit to see my GP, the nurse asked me why I was there and I said "I just need to whine." (They (Dr.Nurse, Receptionist) have been so supportive to me through all of this.)

But I'm careful to be grateful and say so on the good days!

Sent by Vicky (NY) | 12:42 PM ET | 06-02-2008

Leory... Amen.
Rhonda ... great post.

When I was diagnosed with advanced breast cancer I had so many people telling me to "be positive" that I finally told them I was baning the "P" word. While I agree a positive attitude helps, it got to the point I wanted to scream every time someone said it to me. I guess people don't know what else to say and I understand folks have good intentions. If only being positive could make it all go away.

Sent by Janie | 12:47 PM ET | 06-02-2008

Some people seem to think that IF you are chipper and upbeat all the time, you have more faith. If you AREN'T chipper, you have less faith.. I think that is baloney!! I admire those who can put on a happy face but I have a hard time believing that someone with the C word is ALWAYS upbeat.. And to hide those feelings does more harm than good.

Today I am praying and thinking of Senator Kennedy... Of the journey he has ahead.. It shows that money and prestige and even a huge family can't do it FOR you.. They can help but you must walk the path yourself.. Okay, enough preaching!! smile

Thank you for being here for us, Leroy..

Sent by Patsy Elmore | 12:58 PM ET | 06-02-2008

Dear Leroy,
Thanks for sharing an excellent article. Today as I was waiting for my car to be serviced I read an article by Tom Batiuk who writes the Funky Winkerbean Comic Strip. He was writing about the process he went through when Lisa had breast cancer, was in remission, had a recurrence and died. I remember being upset when he developed this story line in his comic. My feeling at the time was "can't I get away from cancer?" even in the comics. I felt the same way when Lynette got cancer on Desparate Housewives...I was angry. However, after reading his article today in Guideposts I feel differently about it. I did not know that he had prostate cancer after this story line finished.
We get all the positive "thumbs up" stuff in the media, but seldom do we get the reality of it, tough as that is to take.
When I was still in treatment for ovarian cancer my oncologist asked me to speak to second year medical students at UC Irvine, CA along with another patient. One of the students asked the doctor if he saw anything in patients that could predict how they would do and if they would survive...like being positive, etc. His response was that in his opinion patients survive if they can tolerate the treatment and don't if they can't. I am not sure I agree with his response in total.
Thanks for starting us off this week with some food for thought.
Wishing you and Laurie a good week and the privilege to be "grumpy" if you want.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 1:21 PM ET | 06-02-2008

This reminds of a story of 50 lung cancer patients that were studied over several years. Unfortunately, none survived after 7 years but the conclusion was that although there was no conclusive data to support a positive attitude improving your chances of survival, there was consensus that those with a positive attitude found something good in even the worst of days. I pondered this a lot during treatment and after and I have found that when you go for treatment, it was so easy to be positive. Not just for family and self but I thought a lot of the dedicated medical people there and I knew that most of their patients come and go and they have a really tough job. They learn of many that don't make it and it has to be difficult at times. Then, I thought about all those people in the waiting room. You could scan the crowd and almost guess where they were in their treatment. The scared, horrified newbies, the still positive not quite beat down middle of treatment folks. Then there were the ones that knew if they could just make a couple more treatments it would be over, for a while at least. If I could maintain a good sense of humor and a positive attitude as much as possible, someone watching would benefit.

Remember everybody, the day you feel the worst during treatment, smile to one person that you think needs it the most as you come in. It will surprise you how rewarding it is when the pain or fear turns to a smile right back at you. After all, we are all bound together by one common thread, "Members of the Club Nobody Wants to Join!"!

May your day be the best it can today and every day!

Sent by Ed Brown | 1:30 PM ET | 06-02-2008

Sasha,
I am praying for (and, I hope) with you.

Sent by bettye | 1:30 PM ET | 06-02-2008

We all feel varying degrees of wanting to please others in our lives, to the extent we hide our true feelings and condition. I wonder if women in particular are prone to that as we have often been raised to smile and be pleasant no matter what. Sitting in my oncologists office, when I get a good report, I swear I get that same kind of feeling I would get in grade school when the teacher would praise me. On the other hand, when I get a bad test I feel like I've let him down! It's silly since attitude and fighting isn't everything - sometime the cancer just wins, and not because that person "gave up".

Sent by Marcia | 1:55 PM ET | 06-02-2008

Don - I loved your little poem. Thanks for sharing that. :o)

Sent by Deb from Michigan | 1:58 PM ET | 06-02-2008

Leroy: I have written before about being expected to "stay positive" by my family who live far away...until Burge died that is, and then they understood, a little, maybe.

The truth is, most people really don't want to hear anything about what you are going through because it is a very scary time. They want YOU to stay positive so they can relax and not tread into the reality of what is happening. It would be even more scary if they knew the details.

My own son doesn't want me to tell him about the "bad" parts, or maybe any of the parts, so I don't, but it leaves me feeling very alone because the one person I could tell anything too is the one I lost to Cancer. That's not a very positive face to wear, so I put on my game face and keep my feelings inside for "their sake".

I'm currently listening to a book by Jodi Picoult called "My Sister's Keeper". It's about a 13 year old girl who is suing her parents for the right NOT to give a kidney to her older sister who is dying of cancer. The story really hits home and many people wouldn't like it, but the way it describes what the family and patient are going through while in cancer treatment is a real eye opener to anyone who hasn't been there. I'm not sure why I'm even finishing the book but it is so compelling to hear (it's on tape) that even if this is fiction, "we are not alone in this battle"; that a positive attitude won't cure the cancer...but we continue anyway.

A particular part which describes the wonderful nurses in a cancer ward was especially real to my past experience and although it brings lots of tears, it some how is a comforting read.

A special hug to Sasha (and Elaine). I think of you and your husbands every day.

Nikki

Sent by Nikki in Kansas | 1:59 PM ET | 06-02-2008

Well said Rhonda and Ricci I could not have said it better! As a daddy's girl and a 100% caregiver until his death, my father past away Sept 2007, (Lung cancer) the positive attitude flashed across TV and papers and it really made my dad question himself and be disappointed in himself, he would say well this one is working their job still or out and about maybe I am just not trying hard enough, although I can say, since I was there for it all, he was fighting and doing everything he could, he fought 150% through alot of crappy days, alot of different drugs, chemo, radiation, blood transfussions, until it hit the brain and then as much as positive that was there, and radiation it did not matter. These celebrities that have the bucks and the top surgeons that is great, I don't wish cancer on anyone, however, they may just have slightly a better chance because of money and stardom -- my dad certainly could not get into the best oncologist for lung cancer so we just went along. Again yes with a great Spring trip to Florida and South Carolina and yes even some good times and conversation in the hospital or in the chemo room but how dare anyone, especially, who has never been in those shoes or even if they have, say positive attitude is everything when realistically it's not. How dare you not be allowed to be afraid, feel like crap etc. that is why I related and loved Leroy and his blog and the members because it was OK to have a crap day without getting ridiculed for it or without being told oh keep that positive attitude because plenty of days that is very difficult to do. I feel the same with grief. I miss my dad terribly even though 8 months have gone, it still feels like yesterday and the pain runs deep not all days but I still have days where I do whatever I can to get through the sadness! We had a wonderful relationship and he was a wonderful man and grandfather and I still think it's unfair that he suffered so and that at 62 was taken from us at any age cancer just SUCKS! I hear all the time move on it's time (well screw you people) I will move on when I am ready what is with our society god forbid you show any kind of weakness this be strong be stoic is crap sometimes I agree yes we need to be but not all the time. We are all entitled to our days our feelings without being told we are weak or wrong or not fighters. This is just crap! So I end with saying thanks for allowing me to vent and sorry but this has really hit a nerve since every time a celebrity gets cancer everyone wants the public to emulate how they are handling it and really no one knows how they are handling it behind closed doors and that's why the special "Living with Cancer" and Leroy really is a great inspiration to all cancer patients and caregivers because he has been honest, the members are honest. I am sorry no matter how positive that doesn't cure most of the time, I don't disagree it may help but cure --- I am skeptical on that! One day someone told me about a laugh seminar and maybe I should bring my dad to that It has been known that laughing can cure cancer -- come stage 4 lung cancer with mets to bone, brain, stomach yeah some laughing will certainly make that disappear sometimes I wonder how people make it through life. Sometimes the rose colored glasses just have to be taken of and quality vs. quantity comes into play. I want to wish Sasha and her family a better day tomorrow and strength to get through today and just to say it's OK just do what you can to get through until tomorrow it is OK. Love and peace to all fighting this disease at whatever level, stage or treatment or no treatment you are at. Cancer patients really do have courage that is undeniable, unfathomable until in that situation yourself you don't have a clue. The decisions you have to make, the mental along with physical BS with chemo, radiation and then still try to live a normal life but still worrying about family, friends, etc. is a tough job that doesn't always create happy go lucky feelings as everyone wants you to have! Honesty worked with my dad and me and I still feel it is the best policy. My brother lived in the be positive stay upbeat you might beat it (not that I was always negative, but I was realistic) well guess what he now deals with guilt that he didn't spend more time and that he thought they would have more time. I don't have guilt I was there 24 hours a day 7 days a week for the good and bad and would not have done it any differently, while we tried to remain hopeful, we always just lived in the moment and the time we had at that point and out of that time, wish there could be more, came some great memories and those times are what get me through today, the good the bad and the ugly we were together and honest through it all. I was there everyday and my dad was a good enough man to allow me to be there because that is all I could have done. I couldn't change the outcome or make it better but I could be beside him and let him know everyday he was loved and whatever he wanted I would stand by him honorably just as he did for me the past 36 years, he did it for me because this is all I would have after he was gone and this is what I have until we meet again until then those days and days before the C word are what I have! Our society really needs to support this way, for the everyday Joe, who doesn't have a chance but just has today. To all whatever you are feeling, whatever your thoughts, whatever your decision it is OK and the middle finger to anyone who doesn't agree!! This is your life and you have to right to do and feel what's best for you. And if you have a chance to beat cancer go for it, do all you can and god bless --my wish and hope is someday everyone can beat it!!! Love and Peace to all! Cori Swanson

Sent by Cori Swanson | 2:39 PM ET | 06-02-2008

Leroy, so very well said.

Nikki, I agree so whole heartedly with what you have written. This last week we had Memorial Servise for my husband and those who got up and commented gave the message of how positive and upbeat my husband was all the time and how he had made them feel so much at ease. This was very true, he didn't want others to feel bad because of him, but there was another personal side that was so frightening. The times we were so scarred, the sadness because we could not stop the cancer, the alone feelings.Others who have not been in that situation can not fathom. I can relate to Sasha, it is a horrible feeling. But even if it was sometimes fake it still seemed important over these last 2 years to try to stay as upbeat as I could. I somehow think it made it easier. Now I somehow just feel stoik (maybe afraid to feel).

Again Leroy, thank you for being there over these last couple of years. I don't think we would have made it with out you and all the imput from the
other bloggers. My prayers are with all.

Sent by dorothy in oregon | 3:07 PM ET | 06-02-2008

Dear Nikki,
I was going to write to you even before I got to the end of your email and saw my name. You can post any "real feelings" here because we all do understand. As far as the rest of the world, they don't get it and never will. Even if they spend one bad day with you, they can't appreciate the accumulation of stress that has already taken its toll. From the point of view of a caregiver, I appreciate the people who give me some credit for what I'm feeling not the ones who say, "But,imagine how your husband feels". I don't need to imagine. I'm living it everyday. Stay strong, Nikki. I look forward to your posts.

Sent by Elaine | 3:08 PM ET | 06-02-2008

What a great article that is, and how true are the comments. This blog is incredibly valuable for many reasons, especially the way we can be honest in expressing our feelings about our experiences with cancer. Leroy - thank you from the bottom of my heart.
Sasha - How I feel for you. I wish we could help more. The dark days are so difficult to get through.

Sent by Tina from Alton IL | 3:26 PM ET | 06-02-2008

I read the NYT article and associated links prior to coming to this blog and was glad to see it picked up by Leroy. Reading this blog is one of my daily rituals for the past 18 months. I came to this wonderful resource when my friend was diagnosed with breast cancer and now read it as a patient since my diagnosis of a rare type of non-hodgkin's lymphoma six months ago. Thank you, Leroy.

Today's topic hits close to home. Very soon after my diagnosis, I became disillusioned with the 'war'/'fight' metaphor that I had quickly embraced. Does it mean that I will have to be in warrior mode for the rest of my life? How do I 'fight' an incurable disease? Do I have a strategy for the entire war and tactics for each battle? Can I make progress towards healing without tensing up for conflict and displaying stoicism? Am I a coward if I don't live up to the 'you will beat this'/'you are a fighter'/'you are so strong' messages from well-meaning friends and family? All this sounds exhausting to me.

The 'cancer is a gift' metaphor is also unappealing to me. I certainly don't feel thankful and there are many days when I don't feel or act like a cheerful, positive, happy cancer patient. Am I thus hindering my healing potential? Am I being unfair to my loved ones? Am I scarring my children emotionally if I am not displaying optimism?

A few weeks after my diagnosis, I heard Jimmy Liao's This I Believe Essay on NPR. His essay, "Navigating Turbulent Waters", described his belief in the Taoist Wu Wei principle ("going with the flow") -- something he learned by studying fish.

http://www.npr.org/templates/story/story.php?storyId=17225613 "I believe I can get around the obstacles of my life not by fighting them, but by yielding to them and pushing off from them." "There are natural streamlines in our lives. I find by letting go I can harness the complex currents of my life to propel me forward."

I return to this essay frequently and find the 'flow' metaphor more fitting. This concept, combined with my novice mindfulness meditation practice, has been helpful in my 'journey' -- another metaphor. I have a long way to go towards full acceptance and serenity -- but, somehow, going with the flow, navigating turbulence, and cultivating awareness, all feel right to me in this moment. I may pick up my warrior gear at some point though.

This is personal -- we all find our own ways, all of them are valid.

Leroy, best wishes and thank you for initiating this non-judgmental dialogue.

Sent by Dominique - St. Paul, MN | 3:27 PM ET | 06-02-2008

I just informed my high school that I won't be doing a video for them for graduation. They originally wanted me to speak in person, but with chemo treatments, I didn't think it would be wise to shake hands and hug hundreds of people.

It has been in my thoughts every day as I think about how to present a cheerful, determined, upbeat message of hope and "live for today." I was even going to wear my "LiveStrong" T-shirt.

I do try to be upbeat with close friends and family, but I need a little down time on occasion (i.e. shed some tears). Unfortunately, I can't always predict when that downtime might be, although it's usually when I discover I can't do something I used to be able to do.

It's nice to know I don't have to be more pleasant than I was before getting cancer.

Sent by Tom Escott | 3:35 PM ET | 06-02-2008

Leroy, Honesty is something with which all cancer patients live. We want honesty from our Doctors, and we need to be honest with ourselves, if not just for us but for our loved ones. No one should get blind sided by this disease, that is what denial will get you. Thoughts. Stan

Sent by Stan Wozniak | 3:50 PM ET | 06-02-2008

It's kind of funny but I never thought much about this before. I think I blame myself for part of the "stay positive" message I get from others because when I was first diagnosed with stage 4 lung cancer, I was the one who said I didn't want anyone crying over me. My oldest daughter broke into tears when I first told her about my diagnosis. I told her then, that this would be the one and only time she was allowed to cry about this in front of me. I work in the medical field so most of my friends actually are pretty good about not telling me to stay positive if I talk about "when the cancer progresses". But there are one or two who always say "don't talk like that!". As though saying it will make it so. I know it is because it worries them to think that it may happen. But the FACT is that it most probably will happen, it is only a matter of time. And then there are those who listen and ask me questions and show an interest that allows me to explore and voice my concerns without feeling like I am playing the part of Camille. This experience has certainly been an educational one for me as a caregiver (I am an RN) as a patient,,,and as a human being.

Sent by Theresa Lovin | 4:13 PM ET | 06-02-2008

What a timely blog today! I had a procedure done to my liver 3 weeks ago (injection of radioactive spheres into my liver), and as much as I read and heard it would make me feel fatigued and feel flu-like, I guess deep down I thought "Not me, bub" Well, three weeks later and I'm about the throw in the towel. This morning I did finally reach out to my onc, my family and the ER room at the hospital and now I'm on something to help get me back "up" and hopefully it will help. But I am glad I didn't hold back today and try to smile like I have been for the past three weeks. Sometimes it's just good to scream, yell cry and tell your neighbor, "I have cancer and I'm afraid to die!!!!!!!! Help me!!!!!!!!!!" No one judged me or pitied me. They took me by the hand and held it firmly and said they understood. Everyone with cancer has bad days. What a relief. Thank you, Leroy.

Sent by Becky | 4:37 PM ET | 06-02-2008

Nikki - I read Picoult's book, "My Sister's Keeper." Excellent book and I highly would recommend it.

Sent by Vicky (NY) | 5:01 PM ET | 06-02-2008

Thank you for this (and the link to the NY Times article). I think being honest--including being honestly sad, angry, or scared- is all a cancer patient should be asked to be.

Sent by N.R. | 5:39 PM ET | 06-02-2008

What a blog! What insights from everyone!

Sent by Liz L. | 7:12 PM ET | 06-02-2008

Absolutely! My cancer was the most stressful time of my entire life, and although mild by comparison to many peoples' experiences, I still had a lot of days where I just wanted to retreat into my shell and not deal with anybody. To expect any kind of sick person to be "up" all the time is ridiculous. We all have good days and bad days...

Sent by Jennings Heilig | 7:45 PM ET | 06-02-2008

Dear Leroy, Sometimes I feel like my face is freezing into a smiling rictus; I can be unbelievably cheery and soothing on the chemo unit--underline "unbelievably". Me, the big advocate for authenticity--I never get good news (seriously); maybe some of it is just camouflaged dark humor--although I seem to express that too easily at times. I've reined it in because it can make my loved ones look sick and I don't want to disrupt those islands of tranquility--little eyes in the hurricane of cancer. Your post today perfectly captured my experience. Salee

Sent by salee | 8:27 PM ET | 06-02-2008

Yesterday,750 people, consisting of cancer survivors, and their families gathered at the Hospital of Central CT. National Cancer Survirors Day Progam. What an amazing experience to be in the same room with our doctors, nurses, caregivers, friend and family member. One part of the program is the recognition of the cancer survivors. Each person stands up when the year(s) of how long since they were first diagnosed with cancer. Well, let me tell you, as each person stands, there is the true testiment of honesty. Being able to stand up, being able to recognize where you have been, and where you are going, all shows being honest to yourself and those that are in your realm. When we read your blog, we know that some days are just so awful, that is ok with us, because you are being honest in your writing, that is truly the beauty of the blog. So, keep moving forward Leroy, those surviors yesterday, are moving along side you!!
Jan C. in Ct.

Sent by Jan Cassella | 10:44 PM ET | 06-02-2008

Dear Leroy,

Once again you have expressed an important truth.

There certainly is a lot of pressure on cancer patients to be positive, smiling, and happy. Even though I am just in follow-ups, I still do my "happy happy song and dance routine" where everything is fine, fine, fine.

I have always had to hide my moments when I wasn't feeling so positive and smiley, including very recently when I went through a battery of tests to rule out the possibility of mets. Even though it seems reasonable to me that there are times when someone would just get tired of the whole thing - the medical appointments, the tests, the waiting, the expense, and the struggle to juggle regular life with the cancer thing - it seems like that is not allowed. It should be.

Sent by Lilly T. | 12:13 AM ET | 06-03-2008

One of the best things someone once said to me is "Don't SHOULD on me"

A whole range of emotions needs to be permissible. Sometimes, I get tired of people who blow off the side effects of my medication and my way too frequent medical appointments and sometimes I feel gracious that that's all I've had to deal with for almost 4 years... I guess it's that I do feel entitled to call my own emotional shots!

Sent by joan | 3:48 AM ET | 06-03-2008

Hi Leroy,

There are days when I find it hard to be honest with myself. When what is "true," is "D. All of the above."

My perspective and emotions can be varied all at the same time, or in quick succession, and all of them are "truth."

Do you ever experience that?

Thanks for being here.

Kim

Sent by Kim | 7:17 AM ET | 06-03-2008

When I was diagnosed with stage 4 breast cancer, I made up my mind that a positive attitude was critical for me and any survival time that I was to eke out. My husband is the only one that sees some of my bad moments. He doesn't see all of them. It is a strain to keep up the public face and the private face. But I do know myself and, (I am speaking about only myself) if I let myself always express openly how I feel emotionally, I'll crawl into bed and not get out -- ever again. And I don't want to live my life that way.

I have been fortunate so far in how I feel physically and that has a great deal to do with keeping a positive outward face. No nausea from the chemo. Yes, I have other gastro-instestinal side-effects from the chemo and there are days that I'm so tired I don't think how I can't get out of bed. But, I have been very lucky so far physically. So, for me, it usually is easier to express a positive attitude with my caregivers.

Yesterday at chemo, the port nurse thanked me for the type of clothing I wear because it makes her job easier accessing the port. My chemo nurse thanked me for my smiling face and attitude. My chemo nurse loves all her patients and takes amazing care of them all. She is one that really looks you in the eye and is there for you. In the chemo waiting room, I had a good talk with another breast cancer patient that I know. So, yesterday was a good day.

The bottom line is that everyone has the right to deal with cancer as is best for them. This is a terrible, terrible thing that is happening to us and our families. Deal with it the best way for you and don't feel guilty.

Sent by Carol in Nashville | 7:21 AM ET | 06-03-2008

By chance I have just read this quote of a writer called sylvia plath (to her mother)

"Don't talk to me about the world needing cheerful stuff! What the person out of Belson - physical or psychological- wants is nobody saying the birdies still go tweet tweet, but the full knowledge that somebody else has been there and knows the worst, just what it is like"

Sent by jj | 7:46 AM ET | 06-03-2008

I read this article, entry and associated comments with great interest today (a day late.)

I have to admit I had almost the opposite experience through my treatment. Now, I was (am) lucky that I had a very treatable form of cancer and I did well throughout my surgery and chemo. I truly did feel pretty good most of the time, was able to continue to work, pursue my usual activities - albeit with a much earlier bedtime! and could go on with my usual daily life. My family was very supportive and my friends allowed me the luxury of choosing how I wished to handle my situation - which included a genuinely positive outlook.

So many of my family members have had much more challenging situations with their cancers that I actually felt pretty fortunate when I was diagnosed. However, I was *frequently* scolded, even berated, for my outlook. "You're just not taking this seriously," or "You are refusing to face the reality of the situation," were common accusations.

No, I really wasn't... (it's hard to ignore things like body parts that get cut off, even with a sunny attitude) but I chose to look on the bright side.

I woke up from my surgery CANCER FREE. That was a great day despite the discomfort and the scars. I had the option of curative treatment, something I know many others can only dream about, and I feel entitled to feel LUCKY that that was the case.

I guess the point of this long winded post is simply that I agree with those who suggest letting people choose to deal with this disease in their own way. Everyone deserves the respect and support for their individual choice.

Sent by susan in ct | 10:56 AM ET | 06-03-2008

Thank you! Right on! (Write on!)

And thanks for sharing a terrific article. I loved the quote that "If Ted Kennedy wanted to stick up his middle finger...that would be the more appropriate finger, but he's doing what he is supposed to."

--Laura
Daughter of a cancer survivor who doens't complain much

Sent by Laura | 2:20 PM ET | 06-03-2008

Our son, Andrew, died May 22nd. He was 35 years old - had a 2 year struggle with melanoma. We were with him at the end. He looked like a concentration camp victim. How terrible this cancer is. We were honest. No trite little sayings. I couldn't comfort him in the end. He was a quiet fellow, very bright - his friends have said he was a gentle soul. We both appreciated honesty. There will never be "a cure" for cancer because there are so many cancers. There will be more targeted, personalized treatments in the years ahead. I wish we had been there two years ago in Andrew's treatment. He participated in 2 clinical trials at NIH with mixed results. We are heartbroken. So glad I had you Leroy, to read your blog and write to.

Sent by Maureen | 8:03 PM ET | 06-03-2008

When I had cancer, I tried to present a positive face because I didn't want to drive away my friends or family. It was somewhat helpful to me also (although I don't believe being positive improves your chance for a cure). Fortunately, I had a relatively easy time with chemo and radiation.

However, I had a friend who died of cancer. He was diagnosed with lung cancer, believable enough because he smoked, but when all the chemo was through, it turned out it had not gotten rid of his cancer cells. A tissue sample sent to the CCD revealed his cancer was skin cancer. He refused to go through chemo again because his doctor said he could not say what his chances were of living). The sad thing is, many of his friends told him he should be positive try additional chemo, rather than supporting his own decision.

Sent by Dottie Nauer | 5:14 PM ET | 06-08-2008

It's been nearly ten months now since I was diagnosed. I could not have made it without my wife and children and the many people that have sent me cards and letters and have called me and visited me.

I never paid much attention to sending cards and letters to people before because I didn't think that anybody really read them.

I know now that that is not the case and have received correspondence, calls and cards from people whom I actually never cared for. This taught me a lesson in humility and a lesson about pre-judging people.

I am not sure if I am going to pull through all of this because the chemo is awful.

However, I am giving it my best. Sometimes my self-pity really wears my family and me out, but mostly they put up with me.

My wife and my daughter who is home from college are my lifeline. I am very very grateful for their love.

Sent by J P Corcoran | 9:23 AM ET | 06-14-2008

I appreciate my partner's natural optimism, and am sure that it has only help throughout his treatments. He does have bad days, too, and doesn't complain much. He's finally let go of the idea that he must be "up" all the time.

On the flip side, as a caregiver I feel the constant pressure to "stay strong" and be cheerful all the time--no so much from my partner, but from our family, friends, and his doctors. Happiness, optimism, and all things cheerful don't come naturally to me--not that I'm depressed, just not a constant ray of sunshine--and my partner tells me that NOT just being me is harder for him than my reactions to bad days (his and/or mine), or scary news.

We both try hard to look at the positives, but at the same time, being honest with ourselves is more helpful than wearing the happy mask.

Sent by Kat | 3:25 PM ET | 07-09-2008