I worry about looking normal as my breasts are smaller and my hair shorter.
I want to look feminine and work very hard at it. Also I don't look sick and people are always saying "you look great now" which feels good. BUT, I still have a mediport in me which bothers me about how it looks because it marks me as a "patient" rather than just a regular person. Thank you Leroy for again voicing the people's feelings that live in "cancer world". God bless.
HOPE YOU ARE HAVING FUN:)

Sent by VIcki | 7:24 AM ET | 05-14-2007

I agree that we all want some normalcy in our lives as we fight cancer. How we look is one thing we would like to preserve but sometimes it isn't possible to do. Then vanity takes a backseat!

I lost hair during chemo. It mostly came back afterwards. Radiation to left side of face, temple, collarbone area took all of the hair around my ear and down the back of my head ( I have a comb-down and not a comb-over, ha, ha ), the 7 surgeries to left side of face, temple, 4 skin grafts have left me with a patch-work quilt look.

If and when I'm asked about what happened, I take the opportunity to try to educate people about melanoma, the sun, the need for skin checks, etc.
Perhaps my battle scars will help someone either avoid getting or catch melanoma in its early stages (I'm stage IIIb).

I try to look for the positive in my battle with cancer. I now have a "new normalcy" in my life and in the way I look. I'm ok with it.

Hope you are enjoying your vacation. Keep the umbrella drinks and good food coming! Blessings as always to you and family.

Sent by Al Cato | 7:46 AM ET | 05-14-2007

One of the reasons that I chose to wear a wig when I was going through chemo for breast cancer was to avoid those looks of pity and curiosity. I had such a strong desire to make things feel as normal as I could, given the circumstances. I also made a point of looking as good possible for all my doctor appointments and chemo infusions - not dressed up, but not in my favorite sweats either. I firmly subscribed to the theory that "you only feel as good as you look." Shallow, I know, but it helped me get through it all.

Sent by Gretchen Hoag | 8:33 AM ET | 05-14-2007

This is my first post. I am a caregiver for my wife Suzanne that is dealing with stage 4c ovarian cancer. I watched the TV program but was not surprised by your appearance because my wife has the same situation. She does not look like she is dealing with a life threatening disease. I do see the damage the treatments cause because I am so close to it, but the appearance is deceiving at times. We are glad you are getting a well deserved vacation and was very appreciative of your TV program because people need to see and understand how bad this disease is and how people learn to live and deal with it. Enjoy the vacation.

Sent by Dan R. Musgrave | 8:39 AM ET | 05-14-2007

Leroy

Since I was 20 when diagnosed.. I didn't have the issue of trying to look 20 through my treatments because I already was 20... though I wouldn't mind looking 20 NOW!! LOL

I went through treatments in 1975... as most do, I lost my hair and at first I was mortified and scrambled out to get a wig... but honestly I wore it for a short while then decided I was who I was and people could look, stare, comment, think what they might... it was actually kind of freeing to file away that wig!!

Of course I also did not look "sickly" other than the loss of hair and so I suppose was easier in some ways...

I will also admit... I too "look" when I see someone obviously dealing with cancer with the hair loss and such.. but it is from more of a "been there... done that" kind of way.. though they do not know that...

My heart goes out to those I see like that and I often want to approach them and tell them I have been there.. but I do not... some would welcome that I am sure... but I suspect many would feel it an intrusion..

I would be very interested to hear from others.. when you are in public.. would you appreciate someone approaching you and saying "I have been there and survived".. or do you wish to be left alone??????

I would also like you to know Leroy.. you have inspired me to begin also blogging and trying to share my thoughts etc... if interested you may see my blog posts on www.canceradvocatescoalition.org/blog1

Keep up the great work and giving everyone a thought provoking place and a place to read and share!!

Ron

Sent by Ronald K. Bye | 9:02 AM ET | 05-14-2007

Hi Leroy, I am a "Living with cancer" spouse. My husband has been receiving chemotherapy on and off for past 14 months. He has not lost weight and does not look ill. The only change in his physical appearance is his hair loss. The comment I would like to make is this. The only thing bad about physical appearance is that it is a CONSTANT reminder. Its always an emotional setback. My husband hates to look at himself in the mirror and this makes me very sad. He used to take great pride in his beautiful hair, hell, he used more hairspray than me. He don't like to go out to restaurants or public places, he feels as if people are staring at him; not a good feeling. But, like you stated in your blog "Who ever said this was fair?" Enjoy your vacation and keep those Mai Tais coming.

Sent by sasha | 9:22 AM ET | 05-14-2007

Can you share with us what Chemo you were considering, but decided against? I hope your having a wonderful vacation!

Sent by Sue | 9:25 AM ET | 05-14-2007

Hi Leroy and all;

I like to say that I have the world???s most expensive bad haircut ??? administered by a board certified member of the American College of Neurosurgeons.

It???s bad all right ??? no hair on the left front of my head and grayish-brown patches elsewhere if my wife hasn???t gotten to me recently with the clippers. I sometimes wear a hat, but mostly to protect a rather sun-sensitive skull. Otherwise about the only changes in my looks is the fatigued stare that takes over when I???m really tired ??? a frequent occurrence. Otherwise I look pretty normal.

I guess I???m being defiant. I want people to accept me as I am in an overly looks-conscious world. Within my own circle, most people do. When I recently spoke in public no one commented or looked at me weirdly. I was suited up and shaved to the skin, but my all-too-evident craniotomy scar was showing.

Otherwise almost no one comments except for my doctors who may see the hair as a negative statement about their work.

I guess one thing that does get to me is that people insist on telling me how well I???m looking when all I???m doing is looking (almost) normal.

But I share in most of the normal prejudices and fears as well. I have a friend who is in a wheel chair and partially paralyzed from a stroke. It took me awhile to just be with him normally. I think many of us have a prejudice toward the so-called ???normal??? in appearance and behavior ??? event if we ourselves are not.

My appearance challenges others to accept me as I am ??? in their world as well as my own. But can I practice what I preach? I???ve still got a ways to go.

Have a great day,

John Shippee
Atlanta, Georgia

Sent by John Shippee | 9:30 AM ET | 05-14-2007

Leroy,

Aside from vanity, I think one of the reasons we still worry about how we look is that we still want to belong to the old world.

How haunting it is to want to "go back."Not just back to pre-cancer, but back. Back to a better time, back to the people we loved who aren't with us anymore, back to whatever we cherished that is gone. We ache with nostalgia at times. And we are human because of that and it's okay.

Sent by Diana Kitch | 10:45 AM ET | 05-14-2007

After my lumpectomy in 2000 (made me a cup size smaller on that side) I cried every time I took a shower, got dressed and saw the nasty scar and it's been very difficult to find bras that fit well. But on my first outing after my surgery, I saw a woman in a wheelchair with both legs off. It put my ugly scar into the proper perspective.

I chose not to do chemotherapy (although I was advised to) but the fatigue that you (Leroy) talk about from the chemo treatments are so familiar to me anyway. I was surprised to hear you say that you don't have any symptons of being sick apart from what the chemo does to you. My Drs have told me that having cancer can cause that draining fatigue. It's like you said about sleep- it doesn't seem to restore it either.

I had mets to bones in 2005 and took some radiation to ease the pain and then another small spot in 2006 which I had radiated.

Back on 2000 they told me 6 months if I didn't accept chemo but the odds of the chemo improving my life expectancy for my type of breast cancer were not worth the chemo effects - for me. But here we are in 2007 and yes, I'm still fighting this cancer but I'm still alive and I'm going to keep living until I'm not! :-)

Sent by Vicky | 10:49 AM ET | 05-14-2007

An important part of the impact of the Discovery program may have educating the general public (assuming anyone without a direct connection to cancer actually watched it) that how one looks is often a poor indicator of how advanced or aggressive the cancer is or how likely a person is to die soon. Most people take one look and think they can judge all those things just by superficial appearances. I used to think that, too.

Like Gretchen, I always wore a wig and took special care with my appearance while I was bald and without eyebrows or eyelashes. I didn't want those pitying looks aimed in my direction! But this past weekend, when I led a team of 21 in the Susan G. Komen Race for the cure, I did notice my own reaction to the many women who were bald (as I was this time last yea). I turned my head away! And it was only partly because I thought they would not want to be stared at. It was also because I felt such strong emotion (sympathy, but to them it would have looked just like pity, probably) and might have burst into tears had I tried to talk with them. And we were all so focused on being upbeat and positive, laughing and prancing around. Another thing I felt was a sort of inward shudder at the thought that I might have to "go there" again myself. Interestingly, the photos we took at the race show something I wasn't aware of at the time. I was thinking I looked just great with my new hair, new energy and positive attitude. But in the pictures, along with the bright smile, I think I see a new expression of sadness in my eyes.And it's in my son's eyes, too.

Sent by Doris | 11:04 AM ET | 05-14-2007

It's kind of funny that today's topic is about appearance, since I just got done ordering another wig online. I lost my hair early on like alot of people and it was yet another thing out
of my control. When I finally started going out with a wig on. People that didn't know I was sick asked if I had changed my hair, and I would explain that it wasn't really my hair just to bring some humor to the story I was about to tell them about my cancer ordeal. The wigs I have worn actually look better than my real hair did and it is certainly easier to care for.I like wearing them not just because they change my appearance so much that I look "normal" but it is also something positive I can do for myself. Since almost everything else seems so out of my control. It does tend to have people tell me how good I look, and it makes me wonder if they understand how sick I really am.
That's the thing about cancer usually it's not visable. It's makes some people expect more from me than I am capable of.I don't think I look good at all, but I try to look my best and if I'm going out somewhere other than the cancer center and I'm feeling good I can almost forget about the cancer for awhile. And that's nice until I remember. But that's the way it is and will more than likely always be. But I can deal with that.

Sent by Susan from Maryland | 11:15 AM ET | 05-14-2007

My appearance is only normal with clothes on. In the past five years the only person who???s seen me sans clothing is my doctor. I don???t want to explain the giant overlapping scars on my belly to the uninitiated. Some time ago I asked my OvCa support group if anyone else felt this way. Another survivor told me to be proud of my survivor scars. I am. I just don???t want the awkward experience of dealing with someone???s reaction to my cancer. I tried dating in the first year of my recovery. There???s nothing like a discussion of your scars and cancer experience to kill the mood. You???ve written before about how people react to people with cancer. I used to try in my mind to predict who would be the ???pity people???, the ???cheerleaders??? the ???pray-for-yous??? or who would be embarrassed to know something so personal about you. As long as no one sees me in the buff and I???m normal.

Sent by Joan Marie | 11:16 AM ET | 05-14-2007

I totally agree with Gretchen Hoag's comments..Having had to go through chemo/radiation in '04 for breast cancer and now having to go thru chemo again; I strive to keep myself looking the best I can possibly be. I wear a wig to avoid the second looks I would get if I wore a hat or scarf on my bald head. I want to get thru this with as little trauma to my inner self as possible. I know everyone handles things differently, but this is my way to keep my dignity too!

Thanks Leroy for sharing what all of us feel. Hope you are having an awesome time and savoring every moment with lots of mai-tais!

Sent by Leslie Miller | 11:25 AM ET | 05-14-2007

Editor - Please tack this "P.S." onto my earlier post. - Doris)

I just went back and read the last few posts on this past Friday's comments and want to strongly suggest you all do the same. I was so impressed by what Michael in Seattle had to say about the way our connection with each other can relieve the loneliness that so often comes with a cancer diagnosis. Amen, Michael!

Sent by Doris | 11:27 AM ET | 05-14-2007

I got my hair cut short so I could have some CONTROL. I'm waiting for my hair to fall out...they told me it would 2-3 weeks after my 1st treatment. I've always liked my hair, thick. In fact people always envied my thick hair. I don't want to lose it. I'm preparing for a very sad day(s). I feel guilty worrying about hair loss when there is a possible cure from the drugs that cause it. Stuck between two worlds. I also think about "normal" what is that? I know my life now is not normal and won't be for at least a year. It's all so overwhelming to think about.

Sent by Joyce L | 11:33 AM ET | 05-14-2007

I agree with Ted, and kind of wish at least one person on the panel looked more as my husband does, not to scare anyone off but just as a representative reality.

Until Jan 2, 2005, my husband weighed 195, and at 5'7-1/2, he was chunky. Now, on a good day, he weighs 140. He's gone as low as 90. About 8 years ago he had a colectomy, though no one would ever have know it. Just started wearing loose shirts.

Upon recurrence of his HNPCC-caused cancers 2+ years ago -- with surgeries (Whipple, surgery for a stomach performation) and relentless 5-FU at varying doses on and off (mostly on and with Avastin)-- he now shows considerable wear. He has massive periodontal issues that lead to some teeth pulled. HIs gums are bad and black at the gumline. His arms are thin, flakey and covered in healed and new purple bruises. His feet tend to drop a bit when he walks due to nerve damage and neuropathy. The only thing that hasn't happened yet is head hair loss, and he's a guy (at 56 and 3/4) who's always had plentiful dark brown hair, bushy eyebrows and a beard. Thank God for that. Even with clothes that fit his new self (jockey build) he often looks pretty drawn and weary, and gets mistaken for my father, or for a late stage AIDS patient.

Today, we just learned (though not unexpectedly) that he has recurrence that PET detected. So, back to 5-FU land to see how long cancer can be pushed back into a corner -- or whether. He will lose more weight, the purple sores on his arms will return. His gums will become more painful and sometimes bleed. Yes, he will look like a person with gastrointestinal cancers who is undergoing treatment. It's hard on his head to look in the mirror, it's hard for me to watch. It's hard for our 13 year old daughter not to be faintly embarrassed by public pity. But, he's still here, hopefully for awhile.

Sent by Teri | 11:36 AM ET | 05-14-2007

I thought of that too. Everyone looked so hale and healthy that I was a little happy to see you (sorry, Leroy) look a little peaked in the chemo room. Seemed a little more realistic to me.

I look the same on the outside now, but, the war the radiation raged in my insides still has ramifications a full year later. I can't eat the same foods, I have to be near a bathroom all the time, and there is still some pain with the surgical scars.
On Saturday, I was talking to a surgeon friend of mine who asked, "Did you have your surgery before or after radiation?" I said, "Before." He said I was lucky and that when he has to operate on people who have had radiation first, "it's a mess of scarring in there."

Maybe it's better not to know things like this, but it is the truth and I want to know the truth.

Enjoy Hawaii, Leroy. And thanks for the blog.

Sent by Robin | 11:47 AM ET | 05-14-2007

Dear Leroy,
Thanks for addressing the appearance issue for us in cancer world, as our own perception and the reactions we get outside cancer world. I lost all my hair once, had it growing back (Bozo-style) and then lost it all again with chemo regimen #3. I bought a wig; it felt and looked like a poodle on my head, so I've never worn it. That leaves me to proclaim my status with the watch caps and bandannas, and to then get "the look" which you so accurately described. Tho I can be sad about a lot of things, my biggest crying jags have been over my appearance. If asked, I would have said I was not a vain person, but I miss my hair. I told a friend I wanted to be "pretty" one more time before I died. She didn't get it. And then there is the shuffling gait, the sad eyes, the halting gettting up, the inability to stand, walk or sit in a straight chair for long...All of which contribute to the pitying look.

If you are middle-aged and your friends are too, few of them get the chemo brain affliction either. If I get lost in my anecdote, can't find words and names or follow a book or discussion and express frustration with my stroke/chemo brain, they dismiss it as the same mere middle-aged phenom that afflicts them.

So I was glad to see the chemo-brain article in the NYT last week (week before?) and the article on today's Salon.com on one woman's experience. Hope you and others will check it out before mai tai time!

Sent by Jan Shotwell | 11:48 AM ET | 05-14-2007

Hi All -

Maybe I've been fortunate that I'm 63 and learned long ago that life isn't fair. "Fair" is where you get a Blue Ribbon for your prize animal. Change is inevitable and accepting change makes the journey somewhat easier. My whole life has been about change.

On "That Day", when I asked he surgeon what caused this cancer of the bile duct, he stated, "bad luck". I suppose denial stuck with me until after the surgery when disbelief overtook denial as my primary feeling. Fear struck later in the process.

Two days prior to the scheduled surgery, when the surgeon came into my room and (paraphrased I'm sure) told me that "there was nothing he could do; that the cancer had spread too far", my wife and I felt that feeling of total devastation that we probably all feel or have felt at one time and I cannot put it into words. The Doctor then decided to run one more test. He did and came back to say he would go ahead with the surgery.

By the time it came time to face chemo, I had already lost 30 pounds in a matter of a month or so. I am now back to my Marine Corps weight! My face was (and still is) very thin. Bones show in my shoulders and I have to sit on a soft chair as I now sit directly on bone. My friends saw this and, frankly, haven't cared that this is what I look like now. They're all still my friends. As for strangers, other peoples' opinions of me are none of my business.

They told me of possible side affects. I am luckier than many as my main side affects are total fatigue, weakness, "chemo fog" and a few other minor inconveniences.

What I really have a problem with is that when I hear a recording of myself, the voice doesn't SOUND like me!

This is all temporary I tell myself: This too shall pass. I will get better.

Sent by Bruce in Florida | 12:00 PM ET | 05-14-2007

I'm the mother of a survivor - throat cancer @ 45 in this past August '06. Your
site was forwarded by a friend & I find it
fantastic. I could comment each day. Re: looking good today - it is amazing how many people look good through treatment - a testament to today's science. AND, I hope (& think) your Dr's. work at keeping you feeling as well as possible thru this ordeal. I could go on & on.

P.S. - Hawaii is also my FAV. Booked a trip for us for one mo in Feb. & he refused to go based on all the 'appliances' he had.

GOOD FOR YOU.

Sent by Joan P | 12:34 PM ET | 05-14-2007

Hi Leroy. I am living with pancreatic cancer. I so enjoyed the program & now your blogs. I have learned there are so many similarities with all cancers. I too "look" healthy, & am told that every day. Only a person living with cancer would understand the good days & the not so good. The fatigue from chemo
anemia, N/V, pain @ times, etc. On the positive side, I try to dress nice everyday, wear some make-up, & have at least one project to do daily. It may take me 2 days sometimes, but gives me a joy/pride to finish it. Thank you for your comments. Hope you are having a nice vacation. Jean

Sent by Jean Trobaugh | 12:45 PM ET | 05-14-2007

It's funny, really, how little most of our looks have changed, even while dealing with advanced cancer. Sure, I lost my hair and was bald as a billard ball, but now it's back, I'm not pale, didn't lose weight, and all my scars are under the clothing.

It's the NON-visible changes that I'm having trouble with. My abdomen is a criss-cross of scars from various cancer surgeries. My vet leaves a nicer hysterectomy scar on our cats than my "famous" gynecologic oncologist gave me. I'm missing a uterus, ovaries, tubes, cervix, etc. Guess what -- there are some psychological difficulties dealing to this rather drastic change, things that are not polite to talk about.

I appreciate that Ted Koppel was concerned about making cancer look like no big deal. I've been a bit concerned of late about other public figures conveying a very casual attitude. The thing is this -- the subtle message of the town hall meeting was that cancer doesn't look the way it used to, but it's still a big deal.

Sent by jane | 1:15 PM ET | 05-14-2007

Like Ron I was young when I had Hodgkins 26 years old, 1974 I had my speen removed and got infections in 2 places so I referred to my stomach as a bowling ball and crudely showed it to all. I lost hair, just it was only below the ears, so my barber was my wife for the next 20 years and I wore a lot of baseball caps. But as I sat in the waiting rooms with people looking at me and trying to figure out if I was a patient or if I had brought someone, Because I looked to young and healty to be sick. Most people that you see watching you are not curious,or showing pity, THEY ARE SCARED TO DEATH IT COULD BE THEM. No one wants to see what the future can hold. My regular doctor had a receptionist Lorainne and a nurse Doris, about 20 years into remission when I went for check ups, I would walk in the door and Lorraine would yell out " THERE IS OUR MIRACLE CHILD" and tell everyone in the waiting room my story. It made me feel good, but today with the laws like they are, you can't do that. If you are fighting cancer, heart disease, or diabetes you want to share your fight with others so go for the gold. It is not right we are all the same, we just take different paths to our end.

Sent by Sam Means | 1:34 PM ET | 05-14-2007

Hi everyone,
I was at the town hall event last week (I was the pregnant redhead who asked the first question). As for the appearance issue, I was diagnosed with Chronic Myelogenous Leukemia five years ago when I was 23. I looked and felt perfectly fine the day I found out so it was really hard to wrap my head around suddenly being a cancer patient when I couldn't see it or touch it or feel it. And nothing has changed. I was incredibly lucky and a targeted therapy (Gleevec) was FDA approved just six months before I was diagnosed so I was able to put my CML into remission by taking a pill (the alternative would have been a bone marrow transplant)...and because it is a targeted therapy, I had almost no side effects. And I never lost my hair. It was so strange for me to be in the waiting room at my cancer hospital looking so young and "healthy" and wondering if people thought I was there with a family member. And then to see people's reaction when my name was called. Of course even my cancer hasn't been a breeze, and there have been hard times, but compared to others (including my sister, who had Hodgkin's Lymphoma and had to go through chemo and radiation twice and ultimately a stem cell transplant) I know how lucky I am to have the treatment I do. And because of that, I've chosen to talk about my cancer in a very public way so that people can see what money for research can do. I've been writing a column for Glamour magazine since I was diagnosed and I now write a blog (http://www.glamour.com/lifestyle/blogs/editor) about my experience, including currently being off my cancer drug to have a baby (so far so good). I know that right now I am one of the lucky ones, but I do feel like it's a sign of what's to come and that hopefully someday soon every cancer patient will be able to look and feel like themselves while going through treatment and that we won't have to question why a room full of patients looks so good. -Erin

Sent by Erin Zammett Ruddy | 2:25 PM ET | 05-14-2007

Hi Leroy, thanks for your new blog while you are on vacation. Appearance is such a complicated notion in our world. My oncologist has been my "hairstylist" 4 times now and each time I have lost all my hair, it has taken an emotional toll. I guess it is an "in your face" sign of what is going on. I wore scarves because I could never find a wig that I felt comfortable in and I also felt that investing in a wig has more permanance to it than I wanted to admit. I have not looked at my body in a full length mirror since my first surgery (for breast and lung cancer) I think avoidance as a strategy is working for me now and maybe the way I go for a long time. I feel betrayed by my body in many ways and can only accept a little at a time. Not looking at a reflection of the ravages of cancer keeps some of my control intact (a false sense I am completely aware) I am on steroids to deal with the side effects and have to cope with weight gain (never a problem before this) and looking puffy. I eat preschool type food in huge amounts like peanut butter and jelly, hot dogs, chocolate cake and mac and cheese and then throw up. It is a necessary evil, the only way so far that allows me to work and function to some degree. So I keep on. I really try to look my best each time I go out, especially to the oncologist with clothes makeup and all the rest. I think that looking well is sending a message that we are living with cancer, not dying with it and so I strive to do the best I can in that area. Enjoy the sound of the waves crashing against the rocks, Best, Estelle

Sent by Estelle | 2:26 PM ET | 05-14-2007

Hi Leroy ~

For me, seeing people who "look good" with cancer is encouraging! It shows that cancer is only a part of your life and does not control your existance. I am a 2 year rectal cancer survivor. Unfortunately, I am a mess from the waist down. I have a permanent colostomy, scars front and back, urinary incontinence from radiation...all daily reminders that will be with me forever. I still cry most weeks in the bathroom, but then remind myself that if these various procedures were not available, I would not be alive. As a woman in my 40's, an active life and my appearance is very important to me...so I do the best I can to look as normal as I can everyday. I refuse to let the cancer win!! Enjoy the rest of your well deserved vacation!!

Sent by Maria | 2:28 PM ET | 05-14-2007

Since my diagnosis of metastatic colon cancer I have lost 40 pounds. I suddenly went from 174 to 134. There is a condition in cancer called cachexia. You may eat and eat but the cancer steals the nutrients from your healthy cells. You lose muscle mass, that's cachexia. There is no cure for my cancer and they are unable to do any radio frequency ablation.

Sent by Kevin | 2:40 PM ET | 05-14-2007

Leroy...........Thank You for sharing your story and opening up a very
helpful Dialog ! Your Discovery special "living with Cancer" has
changed my life!
My husband is battling Kidney Cancer and I am his only confidant ....he doesn't believe in support groups .....so he is constantly looking to me for not only support but reassurances.
Support I have allot of, but I too am looking for reassurances!!! Dealing with cancer, there aren???t too many people willing to give anyone reassurances!!
We see an Oncologist with a very similar "bedside manner" as your
Dr Myers. Our Oncologist is an expert in his field, just as your Dr
Myers. They both share in common the fact that they are both Emperical
Scientist first, compassion, reassuring and hope inspiring, is way down
the list of ???their??? priorities.....but on the top of our list!
Like Lance Armstrong stated in the town hall meeting......he tried
to make a "connection" with his Medical team....be their best friend, brother, etc. We are looking for a connection
with our Oncologist, tried and failed at that.
We will settle for just a little encouragement, that there is hope!
You are proof of that!
Your finding a Doctor to do the Thermal Ablation Procedure was the answer to your having hope!!! It has inspired us to continue being
hopeful!!
We are SO VERY HAPPY for you, that you are presently cancer free!! Savor the feeling and have a FABULOUS TIME in Hawaii!! You deserve a little "Heaven on Earth" after the battle that you have been through!!
Stay Well! I will read your blog, learn from your journey and become the best support that I can. Even though it is my husband who has been diagnosed with cancer it is both of us battling this disease!
Thank you for sharing your story! That sharing is helping us! klm

Sent by Kate McDonald | 3:36 PM ET | 05-14-2007

Before I started taking Erbitux a few months ago, I carefully read all of the information I could find about its side effects, having already been through all of the rest of the FDA-approved drugs for colorectal cancer and experiencing a galaxy of side effects that ranged from annoying to debilitating. I knew that Erbitux caused skin rashes in most patients, but I had no idea how "responsive" I was going to be until I broke out in a severe rash from my knees to the top of my head. With all of the previous chemotherapy treatments, my appearance seemed pretty normal and I didn't look like I was sick. I'll have to admit that I'm a bit more self-concious about my appearance now that I have a bad case of acne on my face (and really everyplace else too. I've had people ask me if I was having chicken pox - if they don't already know that I'm "Living with Cancer", I just tell them that it's a reaction to a drug I'm taking and leave it at that. The rash itches, makes your skin scaly and flaky, and when it's inflamed, really hurts. It's hard to look like you're comfortable. They say that the external rash is a good sign and that if it looks that bad outside, than surely it's raising hell inside, and from what we can tell so far, it appears to be working. I guess one other positive note is that there are people who people who have complemented my me on the rash - of course all of them are at the chemo room. I never thought that I'd ever hear the words "Wow, what a great rash".

Sent by Bob Maimone | 3:54 PM ET | 05-14-2007

Boy, another great topic! I don't know how you do it.

Before cancer, folks always told me I looked much younger than my years. I was fit, thin, great skin, great hair. Life was good.

Cancer treatment gave me no hair, no breasts, weight gain (steroids), loss of muscle. I aged 10 years in two. I looked like my Mom :-O.

Having always had hair that other gals would love to have, being bald was very hard to bounce back from. One day, in complete defiance, I put on my LiveStrong hat (no wig), left my breasts at home and went out in public. My first stop was the auto parts store. I walked in and around the corner and almmost head on into a lady with no hair, no wig, no hat and one breast. We gave each other a huge grin and I realized, I'm ok. I'm not my hair, my wieght, my muscle, my breasts. No children screamed.

I try to look my best but I said goodbye to the old me. Maybe it will be back one day. In the meantime, I went out and bought clothes that fit.

I'm determined to be the funnest of the funny looking old ladies around ;-)

Sent by Karen D. | 3:56 PM ET | 05-14-2007

i have this totally unfeminine look these days that make me wonder if when people look at me.."is it a man or a woman??"...my scars are there under my tops and my hair is coming in like a military buzz cut...before i could wear a "chemo rag" and the obvious was obvious!now i am in that in between phase , i'm positive i am keeping the curious guessing!

ps. i despise my wig...hot especially when enduring a chemo induced hot flash..now i am sure that is waaaayyy too much info to indulge upon our readers but hey...it's life with cancer.period!

Sent by marianne dalton | 4:09 PM ET | 05-14-2007

As I reached my mid fifties last year, I took a long hard look in the mirror. 35 lbs overweight, wrinkles (well earned)but great hair!. In January of this year, I was diagnosed with uterine leiomyosarcoma, Stage III, with metastises in my lungs. I lost 24 pounds in the first two weeks because I couldn't eat due to coughing and nausea before chemo treatments. So now I've lost the weight I wanted to (God sure does have a sense of humor), still have the wrinkles and have lost the hair! Truth is I wear my wig and scarves as a badge of my fight. I've decided it's not the hair loss I hate, it's the cancer. People do stare, but my family love my scarves and my daughter tells me I look glamorous in them. I Hate my mediport because it rubs my clothing sometimes. I still love shoes, and the cancer has not changed that. So, it's off to the shoe store when I'm feeling down because so far my feet haven't been affected by the chemo and I'm going to decorate them as long as I can. So stare at my shoes if you must, but smile at me when you see me in my scarf and let me know you understand.

Sent by Ellie Algatt | 4:12 PM ET | 05-14-2007

Ronald wrote...My heart goes out to those I see like that and I often want to approach them and tell them I have been there.. but I do not... some would welcome that I am sure... but I suspect many would feel it an intrusion..

2.5 months after my final chemo last year I was collecting tickets for a concert. My hair was growing back in, but not enough to brave the public so I had my scarf on. A woman looked me in the eye and said, "I went to the same barber and I am fine now."

Another time my husband and I had just come from the last surgeon's checkup with the news that I had NED in any of the pathology reports. We were high. As we were leaving our table in a restaurant and a woman who had been sitting near us approached. She said that she has been in my shoes 20 years ago and she was ok now. "You have a strong sense about you," she said, "I know you will survive."

In each case I was so thankful that the woman had spoken to me. And in so few words each had touched my heart. I feel that when I read your blog each day, Leroy and in turn I would like to pass on that hope and connection too as the opportunity arises. xxoo

Sent by Vi | 4:13 PM ET | 05-14-2007

I am a woman, I have a small crop of hair left. I do not wear a wig. I'm most comfortable at school where 700+ people accept me without being concerned about looks. When I'm out doing chores in my small community of 3,000 most people walk right by, and I've even been called "sir" in the grocery store. I couldn't go back there for months and now when I do I wear a scarf and earrings. I'd give anything not to have cancer. It's hurt me in so many ways and for me there is no way out, no remission, no cure. I still try to be brave everyday.

Sent by Cheryl McDowell | 5:05 PM ET | 05-14-2007

My biggest appearance change has been due to the dreaded steroids I had to take before and after my craniotomy. I put on 30 pounds so fast it made my head spin. And my face, normally long and narrow, ballooned up with the typical steroid "moonface." Yuck. It is so disconcerting to look in the mirror and not recognize the face staring back at you.

I just spent Saturday at a thrift store buying pants, shorts and tops that will fit. I want to go on a diet and lose the extra weight, but everybody keeps telling me to chill out, and that going through chemo is bad enough. I guess they're right.

I lost a lot of my hair during the chemo, but I had so much to start with so I'm nowhere near bald. A woman who works in the produce section at my grocer stopped me recently and asked me, very sheepishly, if there was something wrong with my health -- she said she'd noticed that my hair wasn't what it used to be. So the whole story came flooding out. I don't mind people noticing, because then I feel seen. But I worry about burdening them with too much information.

I hate not fitting into any of my clothes any more -- being a woman in this society of ours is pretty tough if you're not a size 5 or smaller. But it could be worse. All I have to do is read some of the comments above, like Teri's. It could be so much worse. So now I feel guilty complaining.

But that's just Cancer World, isn't it?

Sent by Jordis | 5:21 PM ET | 05-14-2007

Leroy,

Finding your blog on NPR was like finding an old friend. I am so thankful for the insightful documentary you did last week.

For years I read your emails from Nightline and many times I was so moved by your ability to communicate what I felt.

Now you have cancer. I am a 12 yr survivor of BC which metastasized 7 years ago. I have lost my hair 3 times and know what it is like to look like a cancer patient. I also am fortunate enough to look "normal" right now.

7 years is a long time for a stage 4 person and I know I am over my shelf life!! So, I am going to Paris!! I do everything I want to do now.

I am so happy you had the opportunity to have a nice break in Hawaii. I look forward to reading your blog. It really hits home and I have told my friends if they want to understand how I often feel, they should read your blog. You communicate better than I ever could.
God Bless and Be Well,
Claudia Vidmer

Sent by claudia vidmer | 6:20 PM ET | 05-14-2007

Oh Leroy, you've done it again. This topic is so much on my mind right now that I mentioned on my blog earlier this week and included photos of myself showing the changes to my appearance. Anyone can check it out at soulfulstudios.blogspot.com

All during my chemo/radiation everyone remarked how great I looked. I was bald and gaining weight (steroids) but my color was good and I kept smiling. I was the healthiest looking sick person you would ever meet. However, I wore a scarf and even went around bald sometimes so that people would "see" me. I wanted people to feel a litte discomfort at times because I did. My lymphoma was nearly 16cm in my chest and it hurt. I couldn't breathe well either. At times when people said I looked healthy it frustrated me because I felt like they expected me to act as healthy as I looked and though I tried, I couldn't. I guess I was just frustrated with myself.

Now, I am two weeks out of treatment and awaiting the word "remission" and I look really good. My hair is an inch long and I've lost a little of the steroid weight. I am thankful and lucky to be alive. Yet, I still don't recognize the lady in the mirror. Something is different. Nobody else sees it but me. I feel pretty crappy but to everyone else I look fabulous. Again, this is good and bad. I feel blessed that my only outward sign is a scar, a dent and some blue dots on my chest but at the same time I can't yet do the things I used to do and people don't understand why unless I tell them. I guess it is up to me to educate them. I realize now I have much to offer in terms of education.

So, it seems the changes are in the inside and the outside. I like the inside changes better than the outside. I admit to a little vanity because if I weren't vain I'd be a saint. No saint ever had a good long life. Who wants to be a saint? Not me! LOL!

Hope those mai-tais are great!

All the best,

Lori

Sent by Lori | 6:22 PM ET | 05-14-2007

I am not the patient, I am a care giver. My sister was diagnosed in November 2005 with Stage IV laryngeal cancer. It was a very frightening time. I am nurse, with oncology experience, however, it was difficult.
During my oncology career, I would teach the patient and family what the treatment plan was, the cycling, the lab work. As treatment progressed, I always asked the family member "How are you doing?" During the time I was so very involved with my sister, her treatment, her physicians, no one ever asked me "How are you doing?" They thought because of my medical background, I could handle the world.

Cancer affected my sister, our father, my relationship with my very wonderful beau. It affects every person close to the patient. It is difficult, cruel, and at times very frustrating.

Thank you for your insight..

Sent by Susan Chap | 7:45 PM ET | 05-14-2007

What a pleasure it was to read your blog. I felt like you were reading my mind. I sometimes have a hard time explaining how I am feeling. I went through 2 surgeries for breast cancer and hadnled 8 rounds of chemo like a champ. I actually impressed myself. But something happened to me this weekend. My last treatment was Thursday..all of my family and friends wanted to celebrate. For them, it over...for me, its just began. When I was going through treatment, I had a mission, and knew what I had to do. But now what? I still look like a cancer patient. Is this the end for me? or is the end death from breast cancer? I am having a hard time celebrating and putting this behind me. After all, I certainly don't look like the heathy 35 yr old I looked like 6 months ago. I wonder what will happen when the chemo leaves my body. I hope that in timme, these feeling will pass..and I will get back to a better life. The one thing I can say about cancer, it does make you a better person, it does make you want to reach out and help others (like you have) and it has changed my life in so many good ways. funy how that works!!
Aloha!

Sent by Denise | 8:38 PM ET | 05-14-2007

Leroy,
I didn't know of your blog prior to your appearance on Discovery with Elizabeth Edwards and Lance Armstrong. On March 26, after Mrs. Edwards announced her re-occurance of cancer, I sent her the following message that I wanted to share with you and your readers. I'd welcome everyone's thoughts and comments.

Mrs. Edwards,

My name is Bill and I have cancer. Hairy Cell Leukemia to be exact. I say this not as someone at the beginning of a Cancer Anonymous meeting, or as someone who is coming out of denial about his condition, but as someone who would like others to treat and talk to me the same as they did before I was diagnosed.

I was diagnosed over 12 years ago and after 21 various chemotherapy treatments over that time, I have long accepted my disease and how I was going to fight it. I firmly believe, as I believe that you do, that attitude is critical component of one???s treatment. I've tried to explain to many people that I liked my life, my job, my beliefs, my goals and my relationships the day before the diagnosis, so why would I make drastic changes the following day. My wish would be to have people who know of my disease to treat me the same as anyone else. And to change their expectation that I should abandon the goals and dreams that I imaged as a child or young adult. No one knows how many days each of us has left. No one knows how many dreams you or I can still accomplish. No one knows how many laughs you or I still have. I say, so long as I am fit, have desire for life and the passion to pursue those dreams, I believe in living every day as a human being not as a current or former cancer patient.

Mrs. Edwards, I appreciate the message and statement that you and your husband are making - cancer doesn't mean we should stop living the life we want, being passionate about issues, and wanting to make a difference. I think human beings without cancer need to be better educated that so many effective treatments are available, that a cancer diagnosis doesn???t mean "coach you need to take me out of the game" or that you should treat me as a "dead man walking", that all many of us want is to be treated as normal human beings. We want others to have expectations of us and we want to challenge ourselves to try new things and continue to pursue our dreams.

I encourage you to be strong. I'm sure you already know that fighting cancer is not a fight that you have to fight fairly. Cheat death, tiredness, and anger over the disease any way you can. And please continue to deliver the message that many people with cancer just want to be treated like everyone else - as human beings.

Best Regards,
Bill Singer

Sent by Bill Singer | 9:16 PM ET | 05-14-2007

Leroy,

What is it about that double edged sword of looking normal while being so ill. I found that almost everyone who becomes chonically ill will go out of the way to look and be as normal as possible. Is it to hold on to some kind of control in one's life? Is it to avoid the stares and the pity? Is it because America worships healthy and beautiful people? For me it is all these things.

Men really are visual beings. My ex told me if you see a thin, beautiful person in a wheelchair people will feel empathy toward them but if you see a fat, old and ugly person in a wheelchair people feel contempt for them.

His comments hurt me deeply as I am the latter of the two but I found he was right in certain times but he was wrong in certain times also. My experience is children are the best of all people and the most honest of all. I was in a wheelchair at Wal-Mart and was offered by one small boy to come to his house for Christmas and I asked him what should I bring and he said "Cookies!!" I said great because I make great chocolate chip cookies. I believe the ill person sets the tone of how one views you. I laugh as much as possible - not forced but always looking for the joy. I am no Pollyanna - but I have soooo much pain and depression I need to find the joy as much as I can.

I also try to look my best when I go out which is so silly as it can take up to two hours to get ready just to go to the grocery store!! Then there are days when if I can brush my teeth and hair and wash my face; I am happy that I am able to get out of bed to get my meds.

When I see a person without hair and I will smile weakly and stare and feel sorry for them without thinking I am in the same boat. What is that about?? I think we have never been taught how to treat someone so obviously ill. We know what a bald head means. But now a days some people shave there heads for a fashion statement...so they might not be sick!

I have 9 scars on my abdomen. Men are visual. I have contorted skin and it looks ugly to me. Before I even think of having relations with any man I will go over what I have been through. But since I have had scars since I was 19 I found over the years that it was not a deterrent to most men. Their focus was elsewhere (snicker, snicker).

So I fight back and forth with myself trying do decide how much energy do I wish to put into looking my best.

I know sometimes if I look good I feel good. But most days getting out of bed is a chore so on the good days I want to pretend I am normal and want to look normal too.

Looking forward to tomorrow to read your blog because what you are thinking and writing about I have be thinking about for a long time and now I have a place to share my thought and read others. Thank you so much for this!!

Carole Ehlers

Sent by Carole Ehlers | 10:20 PM ET | 05-14-2007

I want to make a remark to Jordis, who
made the last comment. I also gained 30
pounds from the steroids in my chemo.
At first my doctor thought I was too
thin right after my surgery. Well that's not the problem now. I also hate
not fitting into my clothes. I've never
been this heavy. I'd love to lose some weight, but I'm always hungry and
I'm not very active so I eat from boredom as well. I'm also too tired to
exercise. Jordis, if you come up with a
way to shed some the extra weight, let
me know. Summer is almost here so I can't keep wearing my sweats anymore.
All this may sound vain, but I'm rather uncomfortable with this extra weight, and I'm all about feeling and
looking better. The best of luck to you.

Sent by Susan from Maryland | 10:24 PM ET | 05-14-2007

When I was first diagnosed, I had the surgery, I didn't care about the scar, it was a bad. Then came the port. On the day they put it in, I went and lifted weights, I needed to reclaim some part of my life. The next day I started chemo, two weeks later I had my head shaved because my hair was falling out. I lost my eyebrows and eyelashes, looked a little weird. Hated the wig, so I rarely wore it, I had turbans with lots of scarfs. I wasn't making a statement, it was ore comfortable. It was great my hair started going back,, I began to feel like me again, I could reclaim my body from the poisons.
When they diagnoses the recurrence of my ovarian cancer, and I had my second surgery, I didn't need another port - that has been with me for a year and a half. The new poisons work different with different side effects, more nausea, and the potential for skin problems. They got it all a second time, so I have a good shot of a remission, I just hope it will be longer than a year. When you are well this this disease, you don't feel different and you don't look different, you know however that cancer has forever set you apart and made you a member of a very special club of people who deal with survival everyday in quiet ways. I admire every one of you.

I drank Wahine's downfall in Hawaii, potent drink, how are the my tais?

Sent by Rita | 10:45 PM ET | 05-14-2007

This is my first post too, and I just want to say thank you for saying so many things that I thought about too, but never talked about. I too saw the documentary, and thought how wonderful everyone looked. And what came to mind, was everyone there had all different types of cancer and we therefore, had different treatment regimens. I also felt a twinge of jealousy for those women who didn't lose their hair. I had a stem cell transplant in December for multiple myeloma, and as I stood in the shower on my first day home from the hospital (Christmas Day), my hair rained down around me. I cried harder that day, than the day I was diagnosed. It was not from vanity. It was the ultimate loss of control. Up until that momement, no one knew I was sick unless I told them. Six months later, I still wear a wig, waiting patiently for my hair to grow long enough to take the wig off without inviting questions. I am an ER nurse, about to go back to work in 3 weeks. I just want to look like myself, not a patient. Tomorrow is my 1st year anniversary of diagnosis, and while I look in the mirror, and barely recognize myself, and I am still so grateful to science, and my doctors for the chance to even look. Thank you Leroy, for sharing yourself with all of us. I hope Hawaii is proving to be the best medicine of all.

Sent by Elaine Murphy | 10:48 PM ET | 05-14-2007

This message goes out to Kevin who writes he has lost 40 pounds since being diagnosed with metatastic colon cancer. Kevin, it sounds as if your diagnosis is recent. Have you gotten a second opinion? If not, please run, not walk, to get one. The diagnosis may be the same, but sometimes a new set of eyes can shed light on different or new treatments. Please don't give up, Kevin. My cancer, uterine leiomyosarcoma, is not curable, but we have a plan to try and control any further spreading. I have been given anywhere from 6 months to 3 years survival. I've survived the 6 months and am feeling better, so I am encouraged that before long there may be new treatments. Hang in there, Kevin, there are lots of people standing with you.

Sent by Ellie Algatt | 11:09 PM ET | 05-14-2007

Dealing with my appearance has been a significant challenge for me as a woman in her 30's with breast cancer. It all happened so quickly, the diagnosis-- the chemotherapy..2 weeks the oncologist said before my hair began to fall out... i found a good wig, which cost a small fortune, but what about the eyebrows and eyelashes.. i wouldn't touch my eyes in hopes of hanging on to those few hairs.. i slowly watched as i was down to 3 or 4 eyelashes...
.no more pedicures until well after chemo and weight gain from chemo, not loss..
while all these things may seem petty, it is the little things that cancer robs you of.. things you have taken for granted.. i don't want to be defined by my cancer, but it redefines you whether or not you want it to.....

Sent by Yvette MacDonald | 11:22 PM ET | 05-14-2007

Leroy, Hi it's Angelia Leukemia/bone marrow transplant survivor 5years in June. I am commenting on the vanity part of dealing with cancer. I was only 31 at the time and yes before I became sick I always tried to look my best at work and when I went out, but that all changed when the big "C" came into my life. But years before I became ill, my mother had chemo and a complete mastectomy and she lost her hair. She would not let me see her bald and then one day I happen to walk in on her bald and I remember crying not because she WAS bald, but because she lost all of her beautiful red hair that she had always kept fixed so pretty. Then I thought to myself "if I ever went through chemo and lost my red hair I would just go around bald." And needless to say in 2001, I did just that, mainly because I was so sick and tired I didn't care who stared. I was hoping people would come up and ask what was wrong, not for pity, but to let them know that I wasn't contagious, I just had cancer. I lost my hair twice and both times I never wore wigs, just hats or nothing (on my head hahaha). I did realize how warm hair on your head keeps you in the winter. Now my hair is back and has been for the last 4 years and yes to look at me now I don't "look sick" and I am in remission, but not a day goes by that my body and mind don't remind me by all the aches and pains and stomach trouble, that I am still surviving the biggest fight of my life for the rest of my life. God bless you and Ted for doing the program. Maybe it opened some peoples eyes to ones "living with cancer." Sincerely Angelia Lemons.

Sent by Angel Lemons | 11:33 PM ET | 05-14-2007

It sounds kind of stupid but one of the things I would like to change most about my cancer experience is how it has altered my appearance. I am a private person and if I could have avoided it I would have kept this from many people. I even found myself avoiding people because I didn't want to explain the baldness or wig. I am now on my third eposide with cancer in less than 3 years. The first two times the chemo took all my hair. It is impossible to hide that. This time everyone thinks I am healthy because I am doing a chemo that has not affected my hair - unfortunatley this is the most serious. I have also lost a breast ( not a small one :)) but that was going to result in a perk. I was going to get two new ones and have a complimentary tummy tuck. That plan was ruined when my cancer came back. Of course reconstruction takes a back seat to trying to live. It's a good thing I was never really into appearances. This could be devastating..........

Sent by Jill | 12:19 AM ET | 05-15-2007

I wore a wig both times, more so I wouldn't have to face the looks of pity or concern. I guess I also felt if I don't look sick or act sick I am not that sick. Tho I will tell you that summers in florida, hot flashes and wigs do not mix at all. Tho out off all of this it took my little chihuahua to laugh about having to wear a wig for the second time. He barked at it for over two weeks when I would take it off and put it on it's styrofoam head. Well one afternoon I started to doze off in the recliner and before I fell asleep took it off and laid it on the end table. Chipper had been napping in my lap at the time. He woke up and of course saw the wig (we won't talk about the cost) and I then woke up to him with the wig in his mouth trying to tear it to bits, it took me 15 minutes chasing him through the house to get the darn thing back from him. But I did have one of the best laughs I have had it a long time. Keep Smiling!!!

Sent by Cheryl | 1:07 AM ET | 05-15-2007

Dear Leroy,
operative word-Dear :) I think you must be a wonderful person. - to have this blog etc.. and I am interested in seeing/hearing about your lifes work in journalism. I left my first comments yesterday and was honored I guess and surprised to see the posting it must have seem a little "random" as I didn't really read anything before commenting. I had just seen the Discovery Program and wanted to put my two cents in jumping out of bed from the post-chemo "prednizone mind"(can you chemo folks relate?) thinking "oh I should look him up". Of course everything I wrote I feel deeply about-metaphysics and all. I just wanted to "properly" acknowledge my appreciation of you as a journalist. Also-yes-Hawaii is one of the most healing places! The air was the best for my lungs. I'm wondering if you have already addressed the chemo steriod mind topic. I wouldn't know, but one friend said it sounds like an acid trip ???
On topic-about appearance-Thank god ess we have a sense of humor. Cancer is humbling

Sent by Linda Mowbray | 1:34 AM ET | 05-15-2007

Hey Leroy,
Hope Hawaii is going great! While I don't have cancer (instead Hermansky-Pudlak Syndrome) I can relate to this very, very well. One of our frustrations (those with us with HPS that have a lot of the complications) is that often we look so healthy when we're really not. And that means people, even those closest to us, think we're fine. They expect us to function as though we're "fine" when in fact, we're not always "fine." Many of us elect not to complain much when we're not doing so hot because we get to be a bit of a broken record. No one really wants to hear about how crappy you're feeling day in and day out - so we stop talking about it. Sometimes living with chronic illness comes with so much guilt. Things like, my house should be clean. It's always been clean. Intellectually I know I don't have the energy to clean right now. I know the cleaning fluids and the dust will aggrivate my breathing problems. I know all that - but still feel guilty when things aren't the way they should be. And the problem is often multiplied when the rest of the world thinks nothing much is going on because you look so wonderfully "good."

There's a young woman named Briana Couture who has one of the MDA diseases. She made an awesome pod for Current TV on just this very topic. I posted it on my blog and got a lot of postive feedback via e-mail on it from the HPS community. It makes the point very well. You can find it on YouTube or you can find it on my blog at: http://heatherkirkwood.blogspot.com/search?q=Couture

Scroll to the bottom.

Thanks ..... now, aren't you supposed to be on vacation?

Sent by Heather Kirkwood | 1:46 AM ET | 05-15-2007

Prior to my first diagnosis of cancer, I felt very good. I just had a lump in my abdomen (ovarian cancer). After surgery, I was is a lot of pain of course. Two after the surgery, I was feeling better. And then they started the Chemo. By the third week my hair started to fall out. I cried so much over the loss of my hair. I almost felt stupid for crying more over my hair loss than my cancer. But I think it was because the hair loss was the first sign to me that I was very sick. The loss of hair made me look sickly. It was like a bolt of lightning hit my body. Yea, I was a wig girl. It made me feel better. I admit I feel better when I take care of my appearance. I recommend the program "Look Good Feel Better". They helped me with some issues.

Sent by Betty in Germany | 4:20 AM ET | 05-15-2007

Being from the midwest, we looked forward to the county & state fair every year. When we would complain about life..or anything as not being fair, my dad would say...HEY, the fair comes once a year...so don't expect life to be fair. I still think about that lesson.
Leroy...I missed the special. When will it re-air? Love to all my Cancer Blog friends. You encourage me every day. Be well and be strong. I'm praying for all of us.

Sent by bethann | 6:42 AM ET | 05-15-2007

It is so refreshing to hear folks comment on their appearance. Sometimes I feel like I should handle it better but it is hard to ignore the "oh, you are sick, please take my place in line". Which of course I do, figure what the heck, I'll let them feel like they are paying it forward and avoid my ordeal. I can only imagine what others are thinking since I just scared myself if ever so slightly passing by my bathroom mirror this weekend. I've been bald for nearly 3 months so this is not new. I attribute it to the low level of denial I can maintain when I'm not around a mirror or others. Just a brief few moments to feel normal again. I do wear a wig to work but that's in part to save me and others of dealing with my bald head and the obvious conversation or conclusion. I even wear it sometimes going out to dinner with my partner as to save her from the stares. She noticed the stares one weekend while we were at a garden center and the reality of what is going on hit her hard. Sometimes it's just nice to float along in oblivion.
Glad to hear you are enjoying your vacation Leroy.

Sent by Lisa | 7:48 AM ET | 05-15-2007

Wow, did this hit home, Larry.
When I first realized that something was wrong, I suddenly started losing weight. I dropped very quickly from 168 to 152 lbs., and the first reaction of everyone was "gee, you look GREAT!" Finally, I told a couple of people that I was worried, that I wasn't losing weight because I was trying but because I was sick.
I work for a pharmaceutical company. My co-workers (and I) test cancer drugs. When they found out that I had cancer, they were all very supportive. And at one point, my boss pulled me into her office and asked how I was going to handle losing my hair. And I remember telling her that "I have great hair, and besides, the rats on these drugs don't lose their hair." They all wanted to help me buy wigs. It told them I was going to shave my head and wear a baseball cap... ;-) My hair thinned a bit but it never fell out, through 39 chemo cycles. In fact, I never even got 'bad hair day' sympathy from the people I work with. My worst hair day was better than some of their best.

I worked for nine months with a chemo port, wearing a fanny pack that held an infusion pump. For 48 hours, that pump would whir softly every 10 seconds or so, my co-workers would hear it. I would be bright red on Thursdays (treatment day 2) and when my co-workers would say "did you get some sun?", I'd have to remind them, "no, it's flushing. Just like the test animals..." I gained all my lost weight and an extra 30 lbs on the second chemo regimen--and when I lost it after I went off that regimen, and got back to a more normal-for-me weight, they still all told me "You look great."

The docs all worried that I'd get jaundice, and since they needed to evaluate that from my skin tone, I got out of the habit of wearing makeup. Now, a year after ending chemo, I'm finally slowly adding makeup back into my morning routine...but because I like makeup, not because anyone tells me that I need it. Last fall, six months off chemo, I met my new dog and her co-owner in Harrisburg. I'd never met Lisa before, and I don't know what she expected--but after meeting me, I heard it again: "you know, I'd never guess that you have cancer."

Of course I can't find a bathing suit that covers up the changes no one can see: the two abdomen-length scars from the liver surgeries and the rectal tumor removal, the permanent colostomy, the bump of the hepatic arterial infusion pump and the chemoport near my left shoulder, the bulges from the peristomal and abdominal hernias. And they can't see the internal changes, the feelings you have whenever your body does something a bit out of the current routine, and you wonder "is it back? do I need to worry about this?"

Sent by Pat | 8:11 AM ET | 05-15-2007

I hve gone through a tremendous physical change. I mourned for 2 years after a double masectomy and now with mets to the bone I have undergone radiaton to the skull that has affected the shape of my skull. I now have a continuation of that tumor over my left eye which makes it appear to be swollen and I am not able to open it all the way. I was put on steriods during radiation and needless to say the weight gain was unbelieveable in such a short period of time. The bone mets is also in my lower back and tailbone. Walking can be painful and I am much slower than normal. My hair is beginning to grow back where it was radiated, but it has been a very slow process. I do the ole Donald Trump swoop that Rosie O'Donald felt compelled to taunt. Most people tell me how wonderful I look. There is one person in my office who feels it necessary to tell me how bad my eye looks or if I am limping from pain she reports how beaten down I appear. Needless to say we do not do lunch. I spent too much time grieving over the change in my appearance. The time I have left, I spend looking at the beauty of my husband, children, granddaughter, friends and the world. It's the simple cool breeze that brings the feeling of being alive; or the crashing of the waves against my feet. It's the dance recital dedicated to me from my granddaughter who tells me she is dancing from her heart for me. It's a husband who still holds my hand even in public. And the children who remind me how beautiful I am even on those days I don't feel it. I have still a "good" eye. And as far as my left eye, it takes far less energy to wink at everyone.

Sent by Kay | 8:40 AM ET | 05-15-2007

I guess there is a reason the saying "Appearances can be deceiving" exists. This topic is interesting... the focus on appearance in a general sense is already a tiresome subject - humans should not be valued on how they look, everyone claims to know this, yet these very same humans still seem to me to fixate on it.
As it relates to my cancer experience, this is how the fixation on appearance has caused harm -- for one thing, prior to official diagnosis, because I looked "healthy" (umm, "chubby"), I really think the medical establishment did not take my complaints about my physical symptoms seriously, so I was walking around suffering trying to keep myself going while my cancer continued to advance, secondly, my treatment does not cause side effects such a hair loss, so because I look "normal" (and if you really look at me you can see some side effects), then the expectation exists that I can perform great feats of function, when in truth, I am struggling daily. Yes, I am grateful for my treatment and the promise it holds for my leukemia, and for other cancers (that is my hope), but it does have it's effects. I can only hope that I will receive the support and care I need based on what I am saying, knowledge of the disease, and what is going on internally, and not my external shell.

Sent by Pika | 8:56 AM ET | 05-15-2007

I often read the comments of others and begin to feel selfish in writing in. Afterall, some people have told me, "you have a good cancer." I hear that and I cringe. NO CANCER is a good cancer! I like to think that I have a less aggressive cancer, still, Hurthle cell thyroid cancer is more aggressive than some cancers. I've not dealt with the chemo or the havoc it can cause to the body. I've been fortunate enough to not have radiation as well or atleast not yet. For me, when I look in the mirror, ALL I can see is the three-inch scar located right between my collar bones for the whole world to see. Now I know the thyroidectomy was a fair trade to remove the tumor that was growing out of control on the right lobe of my thyroid...but I still face it every morning when I get up to go to work; my husband sees it; my coworkers see it; my customers see it; and one day my daughter will be old enough to ask me what it is. In a way, I look at it as a "battle scar" and on bad days, it makes me feel so ugly and I wonder what others are thinking.

I guess for me, being 26, I wonder what the rest of my life will be like. I don't know what the radioactive iodine treatment is going to be like and that leaves me anxious and to a point, afraid. Then I wonder, should I fear the treatment that may CURE this disease? Having been diagnosed with cancer, I look at life entirely different. To those that have lost their hair or lost so much weight (or gained) that they can't wear their old clothes...I am grateful to you for sharing your stories. I want to tell you that I think you are beautiful in every way and you are so brave and strong. And to you, Leroy, I cannot tell you enough, how thankful I am to have heard your story. Your ability to put my thoughts and feelings into words astounds and amazes me. Your words of inspiration keep me going some days...keep it up! With love!

Sent by Tess from KY | 9:14 AM ET | 05-15-2007

I remember the time my husband's chemo was canceled because he had a high fever and had to be hospitalized. They made him put on one of the masks to cover his nose and mouth while we waited for admitting to get him a room. It wasn't one of those small simple ones. It was big and thick and very noticable. It was the first time I ever say my husband so uncomfortable with his "appearance." Also, it made me realize that in the past when I've seen people with these masks, I assumed it was to protect US from being infected by what that person had. It never occurred to me that the person wearing the mask was the one that needed protection from the rest of us.

Sent by Tracey Campagna | 9:14 AM ET | 05-15-2007

One of my cancer buddies and I joke about how often people's first comment is, "You're looking great!" He and I joke that what they're really saying, because they don't know what else to say, is, "You're looking really great for someone who might be dying." It's become quite the joke between us. I think it is just human nature as I've found myself doing it to other cancer buddies. I'm not sure any of us know what to expect about how someone who has cancer is suppose to look.

Sent by Cindy Otte | 9:31 AM ET | 05-15-2007

I'm trying to track down a copy of the show "Living With Cancer" with Leroy Sievers & Ted Koppel. My father who suffers from Cancer was really looking forward to watching the show but on the day of the viewing was placed in the Hospital with Cancer related problems. Does anyone know where I can track this down. I've called the "Contact Us" at the Discovery Channel web site but they are having difficulty locating a future listing or whether or not there is a way to purchase a DVD. I was given another # to call as a possible avenue but was only given the opportunity to leave a voicemail. Please let me know where I could possibly look to get a copy of this show. Thank you

Sent by Debbie See | 12:20 PM ET | 05-15-2007

I think that you have made some really good points about looking good. My dad just past away in January from cancer, and his appearance was forever changed by the disease. My dad was no longer the strapping 200 lb man, but at best before the decline 170 lb, and then at the end 130 lb. Weight was not the only thing that changed about my dad. He was left scared on his neck both by radiation and by surgery. He could no longer look sideways or behind him without having to turn his entire body, and although less visible, my dad (the carpenter) could no longer swing a hammer, because of muscles that were both taken out of the neck and shoulder areas, but also from muscle deteriation. My dad never commented much about his new appearance, but I could tell there were times when it bothered him, ecspecially when people would say "Your looking good." Of course, people do this just to be polite. My dad did not look good! After my dad's death, I did not realize how used to his new appearance I had gotten until I saw old pictures of him. This other guy, the strapping 200 lb man, he was not my dad.

So, what is my point? I think that it is important to remember that some people's appearance is changed for ever. However, I also think it is important for society to see those who "look good" like yourself, Lance, and Elizabeth. I think that we get so wrapped up in the numbers lost, we forget those who survived.

Sarah Poe
Springfield, IL

Sent by Sarah Poe | 1:32 PM ET | 05-15-2007

I have been told that cancer cells are rather fragile. That is why they often die when attacked by chemotherapy and/or radiation, whereas our "normal healtlhy" cells survive. Unfortunately, the fragile cancer cells have one overpowering advantage. They reproduce quickly, and even though they almost always will lose a battle, they unfortunately often win the war.

Along the way, our "healthy normal" cells experience some varying level of distress, which we call "side effects." These side effects often make us look and/or feel badly. They are visible signs of our membership in the Cancer World.

When we look well, people who know we have cancer will comment, "My, how well you look!" When we don't look well, people will often avert our eyes and say nothing. In some ways, both reactions are similar in terms of reinforecing our membership in the Cancer World. Behind the message, "My how well you look" is often the unspoken thought "Damn lucky aren't you?" And of course, when we don't look so well....

That's ok. our friends and acquaintances usually mean well with their comments. Cancer World is our reality. It is also our real and sometimes difficult responsibility to live our lives as often and as much as possible outside of this world.

Sent by Andy Halpern | 3:49 PM ET | 05-15-2007

Wow great blog and comments. I had lymphoma which resided in the Parotid Gland in my left cheek and all the lymph nodes around the area..and up to the orbit of the eye. My first surgery was a Parotidectomy through a face lift incission..along with reconstucion of the facial and optic nerves. Some how I was very blessed with a tremendously kind plastic/micro surgeon. Who could heal a person with his kind words. My recovery was long and brutal.With extensive chemo after it. But I gotta say if you see me..there is a divit in my cheek and thats the only difference. If you do not know me you would never know it. However there are many things after that I had to deal with due to the surgery. Along with two oral surgeries as well. Again I had a great dentist. However now due to my second chemo and then radiation to the head to the occipital nodes. My teeth are deterating and surgery is in the future again.
All my surgeries for lymphoma are head and neck however my disease was wide spread and knocked me silly.
Radiation took a good portion of my hair in one area...That is frustrating however I look at it as secondary cause had I not done the radiation I might not be here or the surgeries.
When I look in the mirror now i don't just see..cancer. I see a healthier person emerging for a change and that is awesome.
There will always be internal scars..I think most of us with cancer know it. Those are sometimes hardest along with the mental and emotional part of it.
Leroy I think in someways we are lucky to be getting treatment...now verses years ago. There are so many things in treatment now they did not have years ago and the technical part of it.
Like for me I could of had a massive visual scar...my surgeon because he was well versed and chose to do my surgery different from a ent. For that I am very grateful. I have met many with the ill effects and are doing reconstruction still due to the scars.
I always felt lucky in so many ways at my choices.
As for how others perceive us. Its really kinda sad. There are many diseases that are unseen. But yet with cancer we should look like walking death. Thats kinda sad this day and age.
Yesterday I parked in the handicapped spot. I was exhausted and just not up to par. I am 51 and a grandma..I had my little Grandbaby who is 2 months old with me. I really don't feel I need to justify my health issues to anyone. But the looks I get for using the spot. Well are just wrong..How should I look after fighting cancer since 1997.
So when I see others I don't judge I know the hell I went through. I also realize some days I have a little energy to do what needs doing.
I just think some could be kinder in there actions. I know how I felt after all my surgery and the reactions people had. Its not something I could hide away or stay locked up about.\Looks are decieving and I really try hard not judge how others feel by their looks.
Anyways I love this blog it helps me a ton and I really do appreciate your candor on the subject.
Now go have a MAI Tai!!! Enjoy your trip.

Sent by Kerry | 4:05 PM ET | 05-15-2007

Ditto, Debbie. If there is a way to get or view the program, Leroy, perhaps you could post instructions for us.

Sent by Andy Halpern | 4:07 PM ET | 05-15-2007

Lumpectomy, chemo, radiation in 2003. When it was over we spent a month in a house overlooking the beach in Dana Point, CA. Driving home, we spent a night in San Simeon and toured the Hearst Castle. A younger woman in the group noticed my very short hair, came up to me and asked quietly, Are you a survivor too? I can't explain why that moment of sharing was so special.

I never wore a wig (I think, maybe incorrectly, that I can tell it's a wig), just scarves and hats. I am small-breasted and had stopped wearing a bra when I retired from teaching three years earlier. I wasn't about to start wearing one again, even when the hematoma in the affected breast made it swell to six times the size of the other one. What has deformed my body more is adbominal hernia surgery on top of scar tissue from two gall bladder surgeries. My belly is permanently bloated and asymmetrical. I also have ten inch scars on each knee from bilateral knee replacement.

But hey! I can walk, I'm well now, and I accept my body. ("My God, she'd better!") Consider the alternative. I'm also grateful to have faced my mortality, to know the preciousness of ordinary life.

We all die. Those of us who are lucky become old (not too old, please!) before we die.

Sent by Joan Strand | 5:20 PM ET | 05-15-2007

It's all good.

Sent by John | 1:52 PM ET | 05-17-2007

Leroy, Saw the Special & it was fantastic. My husband who is dealing w/colon cancer (since 2001 with 3 different regiments of chemo & radiation & surgery since then) was out & caught part of it when he came home. I was so glad he was able to see at least part of it; it was a great show and I am hoping he will do some blogging - meds are fine for treating cancer, but support of those going thru it is a blessing; hope your Hawaiian vacation shone the sun on you; the show was a blessing & a ray of sunshine for all of us who can't get to the big island.

Sent by Joyce | 8:01 AM ET | 05-19-2007

I am a 25 year old metastatic melanoma of the small intestine survivor. I believe it took longer for me to reactive any attention from doctors when I had cancer because I looked healthy to people who did not know me. Even with my history of skin cancer. I was told by several doctors when I was initially trying to get help, that I was constipated or that I have heartburn or an ulcer. I was prescribed prune juice and heartburn medications and told to call back if the pain increased . I would immediately explain in detail that the pain could not get worse it was almost unlivable. I could beryl walk. They sent me home. My husband and I were convinced that it was because I was able to articulate what my pain was calmly without being historical. And they saw a calm attractive young woman who had lost some weight. All I wanted was a katscan. So for the next round of doctors we went to my husband suggested that I run up and down some stars at the hospital so they would be able to see what kind of torture my body was putting me through. He also instructed me to be a drama queen which is not my style. So I did. I was in too much pain to walk 3 blocks but I ran up and down thoughts stars. I was that desperate. I looked like I was going to pass out from the pain when I walked in to that office. I was a drama queen, and for the first time a doctor actually took what I was saying seriously. I needed to look sick in order to be treated. Three weeks later I had surgery and I am still cancer free so they say.

I am going thought the roughest part of my chemo so far. Yesterday I laid on the couch and watched your special. You hit home. You said every thing that I was feeling but too scared to say. I'm feel as if I am too young to have those thoughts. Everyone thinks I have such a bright future. I'm too afraid to express all of them to my husband. I do not want to think that I'm giving up. I know it hurts him to talk about death. I'm working and putting him though medical school I am a strong woman. So he understands my diagnosis which is good but also knows all of the possibilities. I feel like if I talk about the what if's it will make them true. So instead I hope and talk about starting a practice with him, children, building a home. I guess I'm not ready to talk about it. When then next tumor hits I think I'll be ready. I always feel like it???s a matter of when the dark cloud is coming not if. People always look at me really weird when I say that. But I felt it creping I knew.

Put another MAI Tai back for me!

Sent by Melissa Hartford | 5:11 PM ET | 05-20-2007