Well said and a good correlation... though in the case of a battle against cancer it is two fold... first the fear of the unknown... what will happen next.. will they live or die... and then secondly the caregiver actually has to stand by and just WATCH their loved one suffer unspeakable horrors through the surgeries and treatments!

The analogy may even be more accurate if one were to have to watch their loved one suffer torture as a prisioner of war........

Having been the patient myself... I just can't imagine how incredibly difficult it was for my wife and family to have had to watch me go through all the surgeries and treatments and all the time not knowing IF I would live or die (and actually having expected me to die as that was the "prognosis".. but somehow I beat those incredible odds AGAINST me over 32 years ago!! Just goes to show ya... the "experts" are not always right!!!)....

My heart definitely goes out to all the caregivers and loved ones out there.. and ten fold to PARENTS... I can not imagine anything more horrible that watching your child go through all of it!!

I believe I have said before... I am part of a group which is planning and will host a "survivorship summit" in CT this fall.. and we will have two breakout sessions dedicated to caregivers and parents for that very reason.. they are almost always forgotten and overlooked in all this!!

I extend a personal invitation to you Leroy or anyone else out there wishing to attend... see all the info at www.canceradvocatescoalition.org

This is a very insightful post Leroy!!

Sent by Ronald K. Bye | 7:51 AM ET | 05-22-2007

Dear Leroy, As usual you are right on target. My husband has had the most difficult time dealing with my cancer and won't get support for himself. I work on taking care of myself because I can't really help him - he has to find his own way. I feel bad about that but worrying doesn't help me so I think about other things and get him to enjoy life with me. Thank you again for your eloquent thoughts.

Sent by Vicki (FL) | 8:28 AM ET | 05-22-2007

My husband and I went out to dinner last night and I was discussing the blog and how personal it has gotten for me. I was explaining how I was so moved by what Nikki had wrote about losing Burge and how I felt so selfish for never really asking him how he was doing through this ordeal. For the first surgery, I was so focused on remaining positive for Sophia, who was still growing inside me, that I completely overlooked his emotions. After Sophia came, I went in for my second surgery SCARED to death, but still, never imagined what it was like to be in his seat. I can only imagine now, seeing him waiting ALONE in the surgery waiting room...wondering if I was going to come through...wondering if my doctors would find more cancer or have to remove lymph nodes and if so, how many. I shared this with him last night and was taken back by his response. Yes, he was always scared, but he beared that burden. And he kept that burden to himself to protect me and my feelings. I don't even want to think about what my parents are going through, either. My Mother is open for discussion AT ALL TIMES and is NEVER negative. She visits this site often, but I don't think she posts. My Father and I don't really discuss my cancer; I know it's terrifying for him and I'll let him deal with this his way because I know he is scared. I guess I just want those around me to know that read these comments that I do appreciate all they have done for me. And although, we will never be able to go back to way life was before, I am so thankful for the life I have and the people in my life.

Great topic this morning, Leroy. It has taught me that while I might be worried about what my life might be like in 1,5, or 10 years; those closest to me are worried sick about what life might be like WITHOUT me. Thank you for that lesson!

Sent by Tess from KY | 8:30 AM ET | 05-22-2007

I think the only words that come to my mind when I think of my fathers demise is a very long goodbye. He doesnt have cancer but he does have Alzheimers~~never knowing, but in his mind he stops wondering, thank god.

Sent by Robin Turman LPN | 8:32 AM ET | 05-22-2007

Hi, Leroy.

You are so right. I think the hardest part of living with cancer is watching my husband watch me. Right after my first surgery, he told me he used to stay up watching me, to make sure I was still breathing. A couple of years later, when we learned it had metastasized, I had to watch him absorb that knowledge and then hold him while he cried. I guess I had anticipated the doctor's report. It's harder to be the observer, I think, especially when you feel like there is nothing you can do. I voluntarily check my control at the door, so to speak, when I have to undergo any procedure and then take it back when it's completed. He has no control over this situation and we both know it. Each day is a gift, and currently my condition is chronic and treatable. So if we are living our own version of biological civil unrest, at least we can try to do it on our terms. And for the moment, we are succeeding. Thank you for this sharing and caring place you've created.

Sent by Erica | 9:41 AM ET | 05-22-2007

It's a journey for both the patient and the family and loved ones. I think some of the roughest moments that i've seen during my training are the times when I see families being torn apart because of the disease; whether it be those who 'can't deal with it'.. as you mentioned, to those who live in denial....'the nile' is a river in egypt' is what I say to myself at times, in order to deal with it --as reality at times is too bitter to face.

That is why Leroy, I think this blog is important for those who may not have other outlets or support otherwise.

I just feel bad for those who don't know about this blog, and for those who don't have access to the internet/computer (because a lot of people

Sent by Krupali Tejura MD | 9:43 AM ET | 05-22-2007

I'm the "caregiver"/wife/mother/?. Recently read something by a wife/caregiver to a man with a chronic, profound physical and mental illness. She said, "I often feel like a widow with a husband." On bad days, I can relate. Other days it's kind of like "Charlie" or "Awakenings." We get little windows where family life (him, me, 13 year old daughter) feels normal, and then the bleakness returns. If I over-identify with my husband's illness, I can't function at work or as a mother. Under-identify, and I overlook something critical and I'm not much of a wife/caregiver. Note the slash. Even when you really, really love someone, this is hard as hell.

Sent by Teri | 9:58 AM ET | 05-22-2007

Dear Leroy,
What a wonderful writing gift you have! It seems every post you write touches my heart. Yesterday you talked about the little things that can stab you and today about being a caregiver.
I have been the patient five times in my life having had colon cancer twice, ovarian cancer twice and last year being diagnosed with Stage 3 small bowel cancer. That was all a piece of cake compared to hearing that my only daughter has Stage 4 endometrial cancer in April of this year. She has just started radiation and chemo and after only two chemo treatments has been very sick. I live with her family and am glad that I am well enough to help out. She has two pre-teen children so that adds to the pain.
I was shopping for some summer pajamas for her the other day. They had sayings on them. One choice was "Celebrate Life"...not a good choice right now, so I got the ones that said "Everyone needs some wuv" with a cartoon cat and dog on them. As you said none of us knows how long we have, I just pray she has a lot more years ahead than I do!
I am also very angry that her doctors did not listen to her when she tried to talk to them about Lynch Syndrome. She tried to talk to her ob/gyn a couple of years ago about removing her uterus. The woman did not listen, did not know and blew her off. She diagnosed herself when she suspected something was wrong five months after her annual exam. She had to push the doctor to do a vaginal ultrasound. I find medical care very scary these days. The first time I had cancer in 1961 I had symptoms on Friday, saw a doctor on Saturday, was hospitalized on Sunday, and had surgery before the week was out. The result was early diagnosis of colon cancer and it was 25 years before I had cancer again. Last year when I had small bowel cancer it took from April 1st to June 22 to get into surgery. The doctors all blamed the insurance company and the HMO, but I would place more than half the blame on the medical establishment. There is no sense of urgency, yet no one can tell me when my cancer progressed from one stage to the next.
I watched your show with Ted Koppel and was most impressed with Lance Armstrong's comments and passion about improving diagnosis and treatment. I agree with him that are too many unnecessary cancer deaths...and too many of them are because doctor's don't listen and don't know what they should know.
Well, I will climb off my soapbox and get on with my day. I hope you have a good one.

Sent by Charlotte Kewish | 10:26 AM ET | 05-22-2007

Leroy, Once again you're words are right on. I don't know what I'd have done if my husband wasn't there with me every step of the way. About one week after I was home from the hospital after surgery, my husband shared with me what happened just before and after my surgery, I didn't have a clue, I was out of it. He suffered tremendously waiting to get to see me in the recovery room. He waited all alone for hours and hours before they would let him see me. When he finally did see me, he said I looked like I was at death's door, all the tubes and wires keeping me alive. He was told the first 3 days in recovery will determine whether if I survive or not. I can't imagine having to go through what he did. Thank God I am the patient and not the caregiver. He told me how scared he was that I wouldn't make it, but I obviously did. He told me how proud he was of me that I could endure all the pain, he said that he didn't think he could have done so. He is a saint and I thank God for him everyday. Caregiver's need more recognition. Don't send flowers, cards, etc. to the patient only, send them to the caregivers too. One comment I'd like to make is to Sherri: Thank you so much for your suggport regarding wearing my wig or not. I've decided I'm not going to wear it either. Thanks again Sherri. I needed that.

Sent by Ruth White | 10:50 AM ET | 05-22-2007

I was the primary care giver for my mother in-law as she battled ovarian cancer and in that period of time I was battling and still am battling brain cancer. The emotional toll on my health was astronomical, but I am glad I stepped up to the plate to help her. She passed away 2 weeks after my last radiation treatment, and I really think she held on until I was home.

The subject of caregiver and patient is a troublesome subject for me since I was both at the same time. There was a support forum called the Brain Trust that I would visit when I needed to know something that I didn't understand, unfortunately most of the people on the forum were caregivers, and there was even one women who started her own web site to explain the last stages of brain tumor patients and the process of over medication and starvation. I do not visit that site anymore, so I went looking for other avenues and found so many for caregivers, but nothing for myself. I am looking for a positive support group, where people like I have a terminal illness but are still active in life. I am not ready to die, I am still living life but I also live with the anxiety, loneliness, and the fear and a caregiver who has not experienced the words from a doctor's mouth "you will die", just doesn't get it.

Sent by Tricia | 11:05 AM ET | 05-22-2007

I had an idea my father was in the final stages of cancer before we actually found out for certain he did have cancer. Two weeks before he finally agreed to go into the emergency room he had had symptoms, which a doctor-friend had told us (my mom and me) were tell-tale signs of advanced stages of cancer. I tried keeping this from my father, I told him that it might be cancer to get him into an emergency room (he was going to his doctor and specialists trying to find out what was wrong). I kept hoping and praying our friend was wrong...it was nerve wrecking. I was alone with him in the emergency room when the seemingly panic-stricken doctor nervously and forcefully gave us the news that he had metastasized cancer. That was enough for me, I broke down right in front of my father. He was in shock and tried to soothe me. It was awful.

My father died four days later in the hospital. I was with him most of that time and at the end. I cried every day, but not in front of him. The worst part was thinking of all the pain he would endure (I didn't think he would die so soon, but I guess in a way I might have known it, I didn't want to leave the hospital). I tried to be positive, he wasn't in pain, just some difficulty breathing. He wanted to live. The last day was extremely difficult... he was very nervous, things were looking bad, his breathing got worse. I thought it might be his nerves, he was panicking. I didn't know how to deal with it, I acted like everything was ok. I cut his nails and layed down on his bed to sleep with him (he had lost some weight and we both fit rather well). My father had calmed down a bit and I thought his breathing would get better. But my nerves were wrecked and I just kept praying my father wouldn't feel me trembling. He died a few minutes later. He was 62. I don't know how I would have dealt with it if all my fears had been realized: the pain, the fear for days on end. You're all in my prayers. There's a saying I truly believe: God doesn't give you more than you can handle. Hope and faith make it all the better.

Sent by Sandra | 11:10 AM ET | 05-22-2007

I am the Mother of a grown son - cancer survivor. He is doing great, being left w/
minor inconveniences at this point - raspy
voice & much sputtering while eating. However; ea day I marvel at this miracle.

AND YES, being the caregiver is a misery & scary. Thank goodness for my dear friends who listen to me ad infitnum.

Since '98 our family has endured one tragedy after another & my heart feels like swiss cheese - the holes will NEVER be filled. When people use the analogy - 'hit by a bus' - I have another. My younger sister died of an AVM, the following year my husband of a long MD type of disease, then several very close aunts who had supported me through this, all the time our aged Mother in final ALZ stages. Finally, our youngest brother w/lung cancer - who visited our Mother daily & cheered all the other residents as well w/his energetic humor. He just barely survived her by 6 months. Somehow cancer is just scarier, but definitely not alone.

There is a wonderful small foundation in Chicago formed after professionals realized how important the emotional aspect of this disease can be. It's available, free of charge, to patients and families. Last week the therapist asked about all of this. As much as I think I'm coping, her question brought a new flood of tears. I told her I simply couldn't talk about it. I don't deny - it's simply too painful and there is nothing that can be done.

I have just attempted to maintain my sanity & have fun each day.

Sent by Joan P | 11:12 AM ET | 05-22-2007

Dear Leroy,
Up until today I had never felt the need to write, but merely, just enjoy your words.
My mother a 2 year survivor of stage 3 ovarian cancer, was the one I took care of as the youngest of her three children and the only one living in the same state. A job I took willingly. Looking back, she and I share many memories that no one else knows of or can relate to and so has defined our relationship. I believe there is a part of her that thanks me and a part of me that thanks god for her. Right before she was diagnosed in december of 2004, I had my son who is now 2 and a half...I always said that as a young mother, my son saved my life...in a way I wonder if he saved my mother's too.
I watched as she laid in bed on that awful third day of chemo with what I can only imagine as immense bone pain and wondering what could be so horrible that it has put my mother in a fetal position in too much pain to bear the light of day?
It was a journey, one I would never replace for anything else, it taught me how to love beyond myself, beyond anything and just live.
Now, in a month I will be getting married, and look forward to her sitting in the front row, and that man in uniform standing waiting for me.
So my journey as a military wife and caregiver to a cancer survivor will continue and I will willingly serve for as long as they both will have me.
I thank you for the amazingly touching letter.

Sent by Allison Galvan | 11:13 AM ET | 05-22-2007

Leroy,

During my husband's last year alive -prostate cancer - I tried to continue something of a normal life, but don't know how successfully because I dropped 20 pounds and developed permanent insomnia. I was tired all the time. Nobody asked us out or came to see us. There was no hospice.

I suggest that if someone you know has cancer, reach out to them and their family. Let them decline your invitations rather than not issuing them. Overcome your own discomfort to provide comfort (if they want it). If you are afraid of saying the wrong thing, go with your heart and try anyway.

There is terrible isolation and loneliness for the patient and the family. Maybe they prefer to be to themselves, but make sure that is true before assuming it.

If you know someone who is grieving a loss, CALL. It is so hard to ask for most of us to ask for help, even when we really need it.

Sent by Diana Kitch | 11:24 AM ET | 05-22-2007

I have been away from the blog for a few weeks. For some reason I haven???t felt like coming back into this world. I am now one month post chemo for invasive breast cancer and have started my Tamoxefin, hormone therapy. I am still bald so I am reminded every day what I have gone through. On June 5th I will have a follow up MRI. I was on the other end of the caring. My family, my husband, they were the one???s waiting and sweating the next not so good news. But as I sit here writing, I am facing the possibility that my husband may have prostate cancer. He is 58, and last week his PSA test jumped to 5 on a routine yearly physical. He will have a biopsy on June 4th. I am not a stranger to watching and waiting???we have had two family members succumb to this insidious disease and no matter how many years it has been, you still remember the agony of standing by, wondering what will happen next, what to do.

Your analogy today hit home. My brother was deployed to Viet Nam in the late 60???s. My sister and I were just young adolescent girls, watching the nightly body counts on the national news. We knew that Viet Nam was a steamy hot jungle, a scary place where young boys and men went, and didn???t come home. His letters were vague and censored, (they weren???t allowed to pin point their positions.) And they were always weeks old by the time they arrived. We watched, we waited, we prayed for the day he would step off the plane and we would awaken from the nightmare of war.

So I will wait and hope that my dear husband will not become a soldier in the war that I have just waged. Somehow it is not so scary when you are the combatant. I wish it were me again, not someone that I love.

Sent by Patti | 11:27 AM ET | 05-22-2007

Hello Leroy, and welcome back from your vacation. I think that you brought milder weather back to the Northeast with you.

As usual, you have an amazing ability to recognize and perfectly describe the obvious in ways that make us take pause and think. After my diagnosis in March last year, my husband spent most evenings holding and comforting me, as we each painfully looked at the future for ourselves, our children, our parents, and others. Along with that, the most difficult thing I had to do was tell my parents over the phone, and hear my 78 year-old mother's anguish. Since we live more than 300 miles apart, she has held both physical and psychological hope for my safe return from my cancer. It has suddenly became necessary for her to hear my voice or email nearly every day.

It's the same with Alzheimer's. Recently, a very dear friend was in tears after she and her father just placed her mother into the 24-hour care facility within their assisted living complex. She has seen the road that her mother will travel with other relatives, and knows what awaits.

Thank you for showing their perspectives to me in a new light.

Sent by Sheara | 11:35 AM ET | 05-22-2007

When I read this post the only thing I could think of is, "yes, I have cancer, but I still WORRY about other people". Just as your friend is going off to a war that I cannot sometimes make sense of...each and every day I worry that my husband will have a nervous breakdown, my doctor will give up on me, my little brother will grow up with out a sister, I worry.

Cancer does not stop us from being loving, concerned people. I am still, if not more, invested in my family, my friends, the soliders who are fighting for our freedom. I try to have conversations with my husband about the war, about the senseless deaths of civilians, and he answers, " You have enough to worry about, Laurie, don't think about all of that." But the truth is, if I stop worrying, if I stop feeling, I stop living.

I want to tell everyone here who is a caregiver, do not think you cannot tell us, your patient, how you are feeling. I feel so much better when I can know what my husband is feeling, think about it, and talk to him about how we can get him feeling better.

His life has not ended, and I keep telling him that. Encourage your caregivers to go out with friends, go have a drink..We are only in our twenties and I know that drink every once in awhile with the guys really helps my husband.

I know some people require around the clock care, but I will be okay for a day, a few hours. I can call a friend if I need something.

Just please remember that WE want you to take care of yourself too. And WE want to know how YOU are. Some days my mind is consumed with worrying about my husband, not my cancer. I wish, with all my might, that I had not gotten this, not usually for selfish reasons, but because it has changed his life...forever.

Leroy I will keep your friend in my heart...Along with all of the other selfless and brave men and women who risk their lives every day for us.

Sent by Laurie | 11:45 AM ET | 05-22-2007

Dear Leroy, I have been reading your blog and sending posts regularly since the "Living with Cancer" documentary aired. I find it very inspirational and comforting, but somehow, I never felt as connected to it as I did this morning. I am the spouse, the caretaker and have often felt as if I really didn't belong on this blog, because the majority of the posts are from the people who are the cancer survivors. I feel guilty complaining about my emotional fears and my sadness to those who are not only suffering emotional pain but physical pain as well. I would like to say one thing though, ..................sometimes things can get so bad emotionally that the pain does become physical.

As I have mentioned in the past, my husband (60 yrs old) does not really like to discuss his cancer with me nor do my three children. He looks like the picture of health. Aside from his hair loss he is tolerating his chemotherapy well. My two younger children know that he has cancer, but do not know the severity of his kind of cancer (metastatic) My oldest son is a primary care physician who knows EXACTLY whats going on......he is the one that has consultations with the oncologist, sets up the scans for us etc, and HE is the one who speaks to me the LEAST about my husbands cancer. Whenever I bring up the subject or ask a question he tells me that he can't think objectively and I should discuss it with the oncologist. When my husband was first diagnosed my son blamed himself for not having his father checked thoroughly enough. I hurt for him, its not his fault. When my husband and I reached 50yrs old he had us both checked out with the usual tests, colonoscopy , blood work, stress tests, etc. I wish he would have watched your documentary, especially the part where you said " It just happened, nobody to blame, my doctor did a great job"

In closing I would like to thank you again Leroy for this mornings blog about the spouses and caretakers. I now feel like I belong. I have a place to share my feelings.

Sent by sasha | 11:56 AM ET | 05-22-2007

I grew up Unitarian, singing songs with Ric Masten. He has a blog where he has been chronicling his fight with prostate cancer. He is in year NINE! I thought I should share it with you

http://www.ric-masten.net/Prostate.Series.html

Since February 14, 1999, poet/philosopher RIC MASTEN has been keeping an ongoing account of his battle with Incurable Advanced Metastatic Prostate Cancer from diagnosis to the "Latest Update." He keeps this unique digest in poetry, musings and medical tidbits. Updating as the war goes on. He welcomes calls and correspondence from fellow cancer fighters.

Sent by Dianne Rhodes | 12:09 PM ET | 05-22-2007

Leroy, War is a very bad place for everyone involved, the soldier or marine and their families. It is easier to go and fight, I think, rather than stay at home and worry. Vietnam was a different kind of war, but not so much as many might think. The Cong had a nasty way of setting traps which were, in their own way, just as deadly as the IED's our men and women face today. I made it through those times and now have this to deal with. I worry for my wife as she watches what I'm going through. Let's face it, in a way, we are all in a war for our lives too, not so different as the dangers our troops face. At the end of the day, well you might not be here. Scary for all concerned. I will pray for your friend, and the rest of our troops in harms way. Thank you, Stan

Sent by Stan Wozniak | 12:10 PM ET | 05-22-2007

OK, Leroy, thanks a lot...now I'm crying again. You seem to have a window into what's going on with a lot of us. It's uncanny.

Diana and Teri, I know where you're at right now. For me, it's been 13 weeks and 3 days, and it's no easier. I was pretty much sole caretaker, and in some ways Terry's death was a relief after five years of struggle. I was exhausted.

But I don't know how to fill the time I now have. It's too soon to start thinking of volunteering, which I do plan on doing, so I find myself just kind of...I don't know...I guess lost is a good word. Two decades takes a while to get over, I guess.

Sent by Bruce | 12:26 PM ET | 05-22-2007

Very well put Leroy. I don't think I understood this when I went through my cancer. Turns out getting comfortable with your own death is much harder than getting comfortable with your loved ones death. When my wife was diagnosed with breast cancer, this fact became brutally clear. In fact, having gone through both cancer and supporting a loved one going through cancer, I can unequivocally say the latter is harder.

This post was my final conclusion on the journey:

http://happyinwater.com/progress/2006/08/31/this-moment/

Thanks for your great posts.

Sent by Scott Johnston | 12:28 PM ET | 05-22-2007

Dear Leroy,
I am 39, with metastatic colon cancer. I have two children 6, and 4, and a stoic husband. I have often thought, and said, that I would rather be me than him in this situation. When I'm gone, I won't have to deal with the grief of it all anymore. He'll be left with the grief, plus the job of two people to do on his own. I have occasional shifts in thinking about my cancer--I've gone from hoping for a cure, to thinking more in terms of management--each time feeling a sadness for him, as though I've left him behind. It feels like part of my responsibility in all this to keep him up to date on what I feel and what I know about what's going on. But on the other hand, I have to be careful not to impose my greatest coping mechanism--complete and total awareness--onto him. For me, keeping the reality of what's happening close to the surface forces me to be very conscientious about my parenting, my relationships, my diet, etc. It also spares me the occasional "shock and awe" that occurs when I allow myself to forget what's happening. It's not the same as keeping up any kind of intensity, rather it's just being mindful. It's annoyingly hard work, and there's probably an easier means to the same end that I don't know. But it works for me right now. It doesn't for my husband. I cannot manage his grief for him, much as I would try.
Thank you for your posts, Leroy. This is my first time visiting the blog. I've preferred instead to listen to the podcasts on walks. Your voice has become like a friend's--familiar and comforting. Glad you got to go on a vacation.

Sent by Ellen Royer | 12:45 PM ET | 05-22-2007

Hi Leroy!

After reading your post I realize that I have it fairly easy especially when I compare myself to others in similar situations. God has smiled down on me because the man I love, who I thought I might never hear from again, showed up at my door once again. As we speak, he is on his way to the hospital to undergo chemo and I am not sure about the medical terminology for his procedure but he explains it as the doctors removing most of his blood and multiplying the white blood cells and putting the blood back in his body. He will be gone most of the summer and will be quarantined and I will be unable to visit. He told me that unlike other hospital visits, he now has something to look forward to when he gets out.

It gives me an opportunity to get rid of all of the bad habits I have picked up the last few months from being depressed and to get myself emotionally and physically ready for his return.

I feel like I have a renewed sense of purpose now whereas a couple of months ago I was ready to throw the towel in. Wondering what is going to happen to a loved one is tough but I know now just to enjoy the moment. One moment of joy lasts a lifetime and when he returns I don't know how long he'll be with me but I am damn sure going to enjoy every minute. I absolutely refuse to waste time worrying about how far or near the end is.

Thank you again for sharing the intimate details of your life with us. It is because of you that I have a renewed sense of hope and am able to move forward in my own life.

Many blessings to you.

Sent by Gloria Lovett | 1:01 PM ET | 05-22-2007

Dear Mr. Sievers (How many times do I have to post before I get to say "Dear Leroy"?),
Thanks for speaking up for our loved ones. I've always thought it might actually be tougher on them than it is on us. We know what we can stand. Watching it is another matter.

At the outset, after my diagnosis, I remember my oncologist saying, "Remember - your whole family now has cancer. You just happen to be the carrier."

Welcome home. Best - Susan Schwallenberg

Sent by Susan Schwallenberg | 1:33 PM ET | 05-22-2007

Tricia:
If you're looking for a positive survivor support group, try The Wellness Community. Both my wife (Breast) and I (Prostate) have been going together to weekly support group meetings for three years. If there is no local chapter you can always join an online group. Go to www.thewellnesscommunity.org.
Love,
Don

Sent by Don Winslow | 2:04 PM ET | 05-22-2007

I am blessed to have a caregiver (my wife)who has been with me every step of the way and has never wavered. When I was diagnosed, she took it upon herself to do everything she could to save my life - changed our diet, began juicing, read books on cancer fighting diets, supplements, etc. She went to every appt, every chemo visit, etc. While the doctors did their work, she did hers and for me, hers was just as important. She gave up all of her activities to care for me. I am so blessed.

While we, the cancer patient, are fighting, we can sometimes overlook the impact that cancer has on our caregiver, family and friends. Many want to be a part of "helping" us in any way they can. Sometimes the small things are so important - when my wife's best friend was dying from melanoma, my wife and I went over to her house and planted pansies in her front bed so that the next time she looked out, the pansies would make her smile and bring some joy into her life if for only a moment.

I salute all caregivers! I also salute the family members and friends who take the time to become involved and to do the many little things that might help in some small way. I welcomed everyone into my "fight". We needed help because the "fight" is too difficult to do alone. I was included in prayer chains from churches whose members did not know who I was but knew a family member.

On Leroy's blog - "How Long": I don't know how long it will be for me BUT I do know this, my journey into cancer has been a blessing in my life. I never realized how many people cared about me and my family. I don't take this for granted anymore.

I can say without equivocation that if I must have cancer and I do have it, there is not a soul on this earth that I would rather have by my side than my wife, my caregiver.

Continued blessings and prayers to you Leroy and to your caregiver, family and friends.

Sent by Al Cato | 2:11 PM ET | 05-22-2007

Hi Leroy, thanks for this wake-up call. I often am so focused on staying around and being positive that I don't put enough focus on what my husband and children deal with everyday. We don't talk about the cancer much and everyone has accepted the chemo side effects and the fatigue, but I know that they are constantly worried and stressed. My husband told me that one of the best things that I can do for them is to do all I can to deal with the cancer and to never give up. So I do that for me and for them. My husband and I went to therapy for a bit and it was not the way to go with him. He isn't someone who can talk about feelings in a circumscribed time and with what he considered a stranger. So he deals with it by making things as comfortable for me as possible. Rennovating our home, dealing with the fact that we live apart now and maintaining the level of care for our kids while we temporarily live apart (for treatment). I guess what my husband is telling me is just to do the best I can and so will he. What else can I ask for. You never know what you sign on for when you get married, I am so blessed I got a "good catch" Best to you and your wife. Estelle

Sent by Estelle | 2:22 PM ET | 05-22-2007

Leroy et al...

At first I was hurt and wondering why two friends of 20 and 6 years hadn't bothered to call or visit since I left the hospital in January. It really bothered me. It bothered me more since I told them how important it was to me that they call or visit from time to time ... much as I had done when one of them suffered a minor stroke some time back.

Then those who have been through this journey, told me of similar experiences. I've come to terms that it isn't I who has changed; it is the two of them. You may be right: Maybe they just can't handle it.

I am still who I am.

Sent by Bruce in Florida | 2:25 PM ET | 05-22-2007

Bruce

When I was in that awful place, the worst thing I did was retreat from the world. The best thing I did was work. If you don't have something you have to do every day, I think it is harder. Try making a list of things you will accomplish each day and then doing them. One of the terrible things for me about losing a close partner is that I had no structure to my life anymore. I think it is important to create one.

Sent by Diana Kitch | 2:33 PM ET | 05-22-2007

I found you blog quite interesting today having experienced cancer as both a caregiver and now patient. My husband passed away from pancreatic cancer three years ago this week. I think one of two things happen, you either grow extremely close or apart during this stressful time. I feel vey blessed because although it was a horrible time the closeness that my husband and I had was wonderful. It was probably the time during our marriage that we were the closest. I am starting a
Bone Marrow Transplant and my sisters and family are my caregivers and have been wonderful and am grateful to have them, but I do miss the fact that I do not have a care giver the way my husband did. I feel blessed to have been able to have gone through that experience with him. And I do use his experience and the way he dealt with things as an example of what I am trying to do as I go through this experience from the other side.

Sent by Abby Selman-Pait | 2:40 PM ET | 05-22-2007

Leroy,

This was well put and I really appreciate the perspective. My husband was one who didn't deal with my cancer well, he went from denial that it was anything serious to just shutting down totally when the nasty treatments started. He was there for me in some ways--including driving me to and from chemo/radiation--but just totally emotionally unavailable and, when pressed, very resentful.

It has taken us two years to move beyond that and I still fear what will happen if either of my cancers return(I was diagnosed with and treated for two at once but both early stage).

I just wish he could talk about, or even really acknowledge to himself, how this whole thing made him feel. He has refused to get support for himself although we did go to couples counseling. Your blog today was a good reminder that all that lack of support didn't come about because he doesn't care but because, underneath, he feels that if he didn't shut down the worry and helplessness might be overwhelming.

Sent by N.R. | 3:15 PM ET | 05-22-2007

Dear Leroy,

I should not read your blog when I'm at work....I am trying to control my tears as I read all the comments. But I am so drawn to it that I check it several times a day.

My 6 year old son have been off treatment now for 4 years. But every time he has a stomachache or a bruise or any discomfort, he always worry that it is a tumor. It is extremely hard to helplessly watch your child suffer or ask innocent heartbreaking questions. I follow a distant friend's blog on her 6 year old son's struggle with neuroblastoma (sp?). He was free of cancer for a year now and last Friday they found cancer cells in his bone marrow. The mom wrote that she is watching him play and is having a great time in the backyard and didn't have the heart to tell him what's to come. The little boy is so looking forward to summer and now who knows what lies ahead.

My heart goes out to all of you who had to watch your love one suffer, who has to pick up the pieces afterwards, who has to be strong even though you are falling apart inside. And most of all, Thank You Leroy, for having this blog so we can share our deepest feelings.

Sent by grace | 3:41 PM ET | 05-22-2007

Leroy, Thanks so much for your piece today. I just got back from taking Husband for a doctors appointment. I am the one with cancer. He is the one with incrediably high blood pressure and worried about how my scans will be.Although he would love to say to me he was fine and dandy.. He can't at this point. It shows in his face his eyes and I am concerned more for him then me right now.
This man is awsome for 29 years of marriage he has been there for me . Ten years of that is one on one care was for me ..and our 4 kids. He did everything humanly possible for all of us.
He is crushed that cancer entered our lifes..But he is the one who single handly with his humor and grace. Helped bring me back during some of the worst times.
Sometimes we took cancer free days...of not talking about it or dealing it. Some days it was the main focus. But with him next to me I can do most anything and he says the same for me.
Yes I think the whole family is affected but cancer and each person differently and all the emotions are normal that come with it. Rightly so.
For me its always been if some can't handle it...fine let me know. I can deal with it. But if they say nothing and don't let me know it hurts some.
For me the hardest thing is knowing that my parents though I am fifty can't deal with it. Its far to big as thought of loosing a child before you die. They have been there before..so this is mind boggling hard for them.Being a parent I get it why to.
Even though I survived they still can't discuss it or get to close to it. I look fine so the whole world is fine.
Then there are the ones who surprise us and are in it for the long haul. I do welcome anyone willing to stand there with us durning some pretty hard and lean times.
Thoughts and prayer Leroy and thanks again..Sometimes it helps to read your thoughts so I can gather my own.

Sent by Kerry | 3:42 PM ET | 05-22-2007

Diana:

Work has been an absolute godsend. I truly believe it saved me. I took 3 days off after Terry died on Saturday, Feb 17 and knew that if I stayed in bed one more day I'd die. That wouldn't help anyone....so I got back on my feet and stopped feeling sorry for myself.

Ellen:

I understand this thing you're describing. Even though I'm on the caregiver side--my concern was "what's to become of me?"

That seemed horribly selfish, until I started talking to other caregivers. Then I found out I wasn't alone by any means.

We--your survivors--will be OK. We'll just never, ever be the same without you.

Sent by Bruce | 5:47 PM ET | 05-22-2007

Don,
There is not support group in my area, and the online forum is down until May 28th. I will try again.

Sent by Tricia | 6:02 PM ET | 05-22-2007

Dear Leroy,

Your message today is right on the mark. The caregivers are the heros in this journey. They have to care for us and watch as we have good and bad days. My wife has been tremendous this past year of treatment. She has even been in the room for the 7 or 8 bone marrow biopsies I have had and I can tell from the look on her face that it should be hurting a lot more than it does.
She and I have grown closer thru all of this. When we started this journey we began having a daily prayer time together and continue it today.
I also have an 18 year old daughter and this is such a tough age anyway but to watch and help as your dad goes thru this just doesn't seem fair.

I would not trade being the patient to being the caregiver - it is a much tougher job.

Thanks for your messages.

Sent by Dale Collier | 6:26 PM ET | 05-22-2007

Hi Leroy,
Thank you for your post today. My husband was diagnosed with a very rare cancer almost 2 years ago, and this is a battle we both fight. My husband's last PET scan was clear, so we are on that cautious high of no more chemo, at least for right now. Today I went for a walk and was feeling really good, but then suddenly was struck with that feeling of...what is going to happen...will he be a cancer survivor soon...or will it come back? We try to get on with life, but know that anything can happen. So, thank you for acknowledging the battle ground we both face, because he is not alone in his journey.

Sent by Melanie McClanahan | 7:37 PM ET | 05-22-2007

thank you for your words about caregivers. it is almost 2 yrs since my husband of47 yrs passed away frome cancer.yes family dynamics go thru lots of changes,frome diagnosis to demise.there are times when you go over the if onlys and what ifs, when decisions where made when your love one was unable.thank goodnessfor hospice greiving and good friends and family who called.god bless all of you,both going thru these difficult times.

Sent by donna r | 8:30 PM ET | 05-22-2007

Hi Leroy,
Thank's for the blog. Glad to see something about caretaker's. My courageous wife battled Brain cancer twice, and after 9 year's she passed away.
As a caretaker, along with the daily support, I worked very hard to keep as much humor in our relationship as I could. My wife would call it "laugh therapy". It was quite hard at time's, especially before the once every 6 month's M.R.I.'s. We had a great time durring her 5 year's of remission and we lived life to the fullest. She would get a kick out of my theatre project's and she said that she was the President of my fan club. We travelled, hiked, skied, and socialized as much as her daily pain would allow...and we alway's laughed!
When the bad time came we could still find humor. She was the best at it. After her final radiation treatment's she lost most of the hair on top of her head. Although I knew it bothered her she would still tell our friend's that she was doing her Dr. Phil impersonation. A few week's before she passed I was with her in her room and I finally realized that she was going to die and sobbed uncontrolably. A nurse knocked at the door and asked if she wanted her pain med's. She told her that she would have to come back because her husband was having a meltdown. I looked up at her and she was smiling broadly! I went from crying to belly laughter in a heartbeat!
There were time's in the daily grind of giving her the pain med's, getting her icepack for her headaches, and the emotional toll of knowing that there was a good chance that her cancer would return, that it sometime's felt that I was walking in a hail storm for year's on end. It was the toughest thing that I have ever done in my life but I would'nt trade it for anything! Hanging in there as a 260 lb. cheerleader for the most courageous woman that I have ever met was the greatest accomplishment of my life and I will go to my grave knowing that I will never be a better man than I was durring the time I was with my wife Jaime!
Thanks again for sharing your story.
J.T.

Sent by John "J.T." Thorup | 8:33 PM ET | 05-22-2007

Dear Leroy and friends, As we find our way through cancer, whether as survivor, fighter or caregiver, I wanted to remind everyone of the book Chicken Soup for the Soul. I had first read it years ago when my mom began her slow goodbye with Alzheimer's. It is a book well worth going back to time and again. I hope it brings comfort to you as much as it has me. All the best,

Sent by Ellie Algatt | 8:53 PM ET | 05-22-2007

I do think illness is much harder on the caregiver. When I was diagnosed with breat cancer last year i felt much worse for my elderly parents and other family members. I KNEW that I could handle it but they did not share in that confidence. Just the idea of the treatments, surgeries, and tests that I endured sent them spiraling. When I told my (out of state)Family that I was handling everything well they thought I was hiding something. There was no way to offer them comfort. I decided that I could not worry about them too much. I just needed to do what I needed to do and always presented the positive attitude that I felt. On some rare days when My mouth was full of sores and I could not eat, I would share that with them in hopes they would see that I was keeping it real with them.
My son later confided that he was petrified how I was going to handle
everything. He was surprised how little the treatment affected his world.
My husband was one who has decided to leave. I see now that I was always the one who handles the tough issues and he just could not. As Leroy said, This must be understood as well. Sometimes I think we tend to villianize the deserters. I did for awhile. Thank-God for grace.
I will keep your friend in my prayers as well as his family.
We will get through this thing called life together with joy and hope.

Sent by joyce | 9:38 PM ET | 05-22-2007

When I started my "journey" we had two boys 8 and 10 years of age. The division of labor at our house was pretty basic. My wife took care of the boys. Her goal was to try to make their lives "normal". She took care of the school stuff and managed their social lives. She just wanted our boys to have as normal of a life as possible.

Lucky for me, my mom and dad lived within 15 miles. They kind of took over the role of getting me to and from radiation and chemo and those unplanned trips to the hospital after chemo rounds. Damn neutropenic fever and staph.

It was a major strain on our relationship. The psychological toll on my wife was equally as debilitating as it was on mine. She had been a stay at home mom for 7 years. Now, for all we knew, she was going to be a single mom forever. For 10 months I was pretty much unable to be much of a father or husband. I was a patient and couch potato. When I wasn't in the hospital, she would religiously clean my Hickman ports twice a day after giving me my IV Vancomycin to ward off the staph infection I had gotten in the hospital. She had no medical training. She would try to get me to eat. She'd make milkshakes, baked potatoes, omlettes, anything I asked for...even if she knew I would only eat one bite.

It was hard for me to be so sick and weak and try to worry about her, too. But I know that for everything I suffered, she suffered just as much. If I live to be 1,000 years old, I will not have repaid her for what she did for me.

Your support network is a vital cog in the recovery machine. Without my wife and my family I don't know how I would have gotten through this experience.

Sent by Dave U. | 9:54 PM ET | 05-22-2007

Leroy, now that I know your site exists I am reading it often. I am a Stage 4 Colon Cancer patient and stopped treatment in July. I loved your special with Ted Koppel and guests. I have found a missing support. Thanks If you could share with us your anxiety techniques when the torture sinks in :)

Sent by Kathl;een M. Hitchcock | 10:01 PM ET | 05-22-2007

Whoops forgot to add thoughts and prayers for your Friend and his family

Sent by Kerry | 10:10 PM ET | 05-22-2007

It was hard to read some of the posts today. So much pain! But it did me good to hear other people's perspectives. Estelle, for instance, said, "He isn't someone who can talk about feelings in a circumscribed time and with what he considered a stranger. So he deals with it by making things as comfortable for me as possible.... I guess what my husband is telling me is just to do the best I can and so will he. What else can I ask for?"

She expressed so well how I feel about my own husband. Sometimes he is unable to communicate in the ways I want him to. The topic of death is more than he can handle, usually. But he has been right by my side, every step of the way,through every single chemo and the whole thing, quietly trying to make this experience as easy as possible for me. And knowing him as I do, I know how much he must be suffering inside, yet he keeps up this cheerful front for my sake. And our adult sons do, too. I'm so lucky, and I love them so much.

Sent by Doris | 10:56 PM ET | 05-22-2007

To Leroy and all of you who send your comments. Thank you. I am a caregiver, new to this role. My husband was diagnosed on April 4 with gallbladder cancer. We started chemo last week. Two years ago we faced and beat his prostate cancer. I am confused, but trying to learn so I can answer his questions. I heard Leroy's NPR pieces last year, but never knew about the blog. When my husband was diagnosed I thought about the NPR pieces and hoped to hear them again. My husband was out of town and I was channel surfing when I stumbled upon the Ted Koppel show. I stayed up until 2 a.m. to catch all of it. That led to finding this blog. And that led to finding all of you. This has helped me. A lot. I read my questions in your comments, and in Leroy's blog. And I'm working through it a little bit at a time. As the time goes by I'll rely more and more on all of you. Thank you for sharing. I need you.

Sent by Debbie Carlson | 11:41 PM ET | 05-22-2007

A Woman Wearing a Scarf

In the grocery aisles
I see a woman wearing a scarf
to cover a head with no hair.
I have to find a place
to turn away and lean
hoping no one will notice
as I remember you
with no hair anywhere...
I hold you
as we rock and rock together
and you hold a bowl in your lap
as we rock and rock together
until you vomit
and we rock and rock together
until you can't stay upright.
I ease you back,
lift your legs (so light now)
into bed, take my place beside you.
???Please don't leave me.???
I know that without your hair
you can't see yourself
in the mirror anymore.
How will he know me, you wonder,
if he can't see me next to him?
I know that the fragrance
we loved in this bed for fifteen
years is gone,
replaced by the smell of the chemicals
killing your blood cells.
How will he know me, you wonder,
if he can't smell me next to him?
I hold on to you, promising,
???I will always be here.???
As you sleep our friend asks me,
???What are you really afraid of????
???I'm afraid they're going to kill her,???
and there's no comfort for that,
only me going back to bed
to pray, Please don't leave me.

??2007 Bruce Jones

Sent by Bruce Jones | 2:15 AM ET | 05-23-2007

My Comment today is in response to Charlotte Kewish. I live in Germany, my husband works for the US Amy. I am American. I had my cancer diagnosed by my German GYN. I was in surgery two days after my diagnosis. If I had to wait like you did, my tumors would have been hugh. I am surprized to hear what you say about the medical system in America. It concerns me greatly as we will most likly be moving back to "good ol USA" next summer. I have not had to deal with a major medical problem in the States. So your insight is helpful. Thanks for your openess about your experience. I will be vigilant about my care.

Leyroy, I also loved your topic today. I'd like to give a cheer to the our spouses, family and caregivers who help us so much. I am blessed to have a wonderful supportive husband and daughter. I have always said that it must be harder watching. Just like your friend going to Afganistan. I too experienced the watching part of that. My husband was deployed to Afganistan. He was only there for two months. He came home early as my cancer came back.

Sent by Betty in Germany | 4:21 AM ET | 05-23-2007

Hi Leroy,

I worked in medical oncology for approximately 6 years. I had to teach the patients and families about their chemo, mix, and give them their drugs. I know, that everytime a family member was present, I would always ask them "how are YOU doing?" Fast forward 19 years. I am now in the roll of caregiver. I can tell you through the chemo, and any appointment I was present with my sister I was NEVER asked how I was doing.

I suppose it was assumed, hey you're a nurse, you have worked medical onc you know the drill. Did that make it easier. Of course, not! I didn't know about the financial issues, the lack of insurance, where to go, how to do. Boy was I lost.

I was supporting my sister, helping dad (he saw 87 when she was diagnosed), working a full time job. Without dad, treatment schedules especially daily radiation would have impossible. Without my rock, my boyfriend I would have been on a psych unit. Without prayer I may not have survived my sister's ordeal.

Caregivers..... HEY medical team... Remember to ask "How are you doing?"

Thanks Leroy for telling others the obvious.

Sent by Susan Chap | 7:08 AM ET | 05-23-2007

Hey Leroy -
I'm a caregiver (Stage 3 Rectal) and a patient (CLL). Nice combo huh? My Mom was a care giver for my Dad suffering from late stage diabetes (no less horrifying than cancer, I assure you) and was dead and buried 5 months after his passing from ovarian cancer. We think she ignored her symptoms and attributed them to the labors of assisting my Dad (He was a BK amputee and stroke victim). So a message to care givers. Take care of your self - you can't help anyone if you become sick. It's a trying time and can be daunting, but there is no more worthy vocation.
Finally - Thanks Mom - your example showed me the you can be strong, tender, smart, committed and a loving spouse through the most dire circumstances. Your grace never left you. I don't know how I could get through this without your guiding hand.

Sent by Tim | 9:34 AM ET | 05-23-2007

Leroy,

Your post about caregivers, and all the comments of the other bloggers churned up a lot of emotions for me. At 22, after graduating college, I had to come home to help my mom care for my dad who was in the last stages of lymphoma and heart disease. I was so angry at what was demanded of me, and so depressed because I knew what the outcome would be. I still remember having an emotional meltdown when I had to shovel our driveway because my dad was too incapacitated to do it, my mom wasn't strong enough and my 2 siblings were on the other side of the country (they may as well have been on another galaxy). Deep down, I knew that this was just a foreshadowing of the world I'd be inhabiting once my dad died. I remember my dad taking my hand and saying, "I know that you're scared, and I'm sorry." It broke my heart.

After he died, my mom was diagnosed with emphysema, and I spent my 20s caring for her. Thankfully, I could still work, party, and do other 20-something things, but I was still resentful that I had to live at home and deal with this stuff (the oxygen machine, steroids, ER visits) while my friends were out living on their own and not even thinking about these things.

Now, I am 30, both parents are dead, and I finally have my own place. But I would give anything to be living with them again.

--Tam (Secaucus, NJ)

Sent by Tam | 10:13 AM ET | 05-23-2007

Bruce J--beautiful. It's a place we've all been. I don't think I've cried as much at any thread as I have at this one, just because I remember. And it's so nice to be recognized for doing such a horrible job that nobody should ever have to do.

I remember how hard it was...I remember the treatments...I remember hearing Terry was a "model patient" last September, and then suddenly the treatment didn't work any more. And the decision to stop fighting. That was very hard to deal with.

I remember the good times and the bad, and my heart breaks for all of us.
But I also know Terry's finally got the peace we all seek, and I'm jealous of that.

Sent by Bruce | 11:31 AM ET | 05-23-2007

Leroy: your analogy was really poignant today for I have lived in both worlds also ??? with war and cancer. My husband of 26 years has been battling a rare sarcoma for 13 of those years in his right shoulder which metastasized to his abdominal area. In between a total of 18 surgeries (to date) and four bouts with different chemos, our only son joined the Army. After six weeks of boot camp, he was soon deployed for a year in Iraq, serving with the Army???s 1st Infantry Division (the Big Red One). During his deployment, my husband underwent a chemo regimen that didn???t have any effect on his tumors, followed by surgery # 8. We listened to the nightly news from his hospital room, hoping not to hear anything mentioned about the 1st Infantry or about the town where we knew our son was stationed.

I believe that was the most difficult year of my entire life. Fear and faith were constant companions, and I could not have made it through the fear without the faith. We are so thankful that our son came home safely at the end of his deployment; however, our battle with cancer continues. My husband???s condition is considered ???chronic??? by his surgeons, meaning they expect the tumors to keep recurring. The majority of his surgeries have taken place far from our home at a leading cancer center. I spent many hours waiting alone while he underwent the surgeries because family members were not able to travel with us.

He has recuperated from surgery after surgery and tolerated chemo regimens that ended up having little or no effect on the tumors with an awesome attitude and courageous faith. It has been so difficult to see him suffer so much, but his attitude and perseverance have made it easier for me to cope as his caregiver. It has drawn us closer together as a couple and I am thankful for that.

This last year was particularly difficult on both of us. His right shoulder and arm had to be amputated because a tumor in his shoulder was located too near the major nerve to remove without taking the arm. Then, just five months later, follow-up scans revealed new tumors clustered around his left kidney. The surgeon removed the entire kidney along with the tumors and he has had a difficult recovery. He is still very much in the war, although we are both battle-weary beyond belief. Cancer takes its toll on both the patient and the caregiver ??? it does not distinguish or show mercy.

Thank you for remembering the caregivers and the important roles we play in this war.

Sent by Patty | 12:43 PM ET | 05-23-2007

As one who is at the receiving end of the care, I can so relate to this post.

Seeing the flashes of fear in the eyes of the woman I love, fleeting but yet never far; seeing the quick turns and moving on to do something else so I do not notice the tears building up at seeing the pain caused by the medication; seeing all the extra work she does so we don't feel the loss of one income too much...

And yes, I see her pain as worse than my own, if only because I'm busy fighting the cancer, while all she has is the fear and the sight of the pains.

Thank you, for expressing it so well.

Sent by Benoit | 12:53 PM ET | 05-23-2007

Oh my, I can relate to that fear all too well. My husband was in Iraq during the invasion just over 4 years ago...the same time I was diagnosed with cancer. When I sent him off, I was uncertain of whether I would see him again. And weeks would go by with no phone call. I would get letters that were dated up to 3 weeks prior and I would just soak in ever word, wondering if it would be the last letter.

Then I found out I had cancer. Here I was, spending each day just trying to get through with my husband in Iraq and now I had to prepare for my own battle. 8 days went by from my diagnosis until I was able to hear his voice and he was on his way home to care for me. And each deployment has ended the same since...his early arrivial home to care for me after a surgery.

I will be praying for your friend and his family. Sometimes it's good to be distracted from your own pain to help someone else.

Sent by Cynthia Vissers | 2:58 PM ET | 05-23-2007

I always hear discussion about breast cancer, but I never hear anyone discuss Inflammatory Breast Cancer. I have been battling this disease for seven years, and I would love to hear more discussion. It's far more aggressive than other types of breast cancer, and is rare, at least in my part of the country (Iowa).

Sent by Gloria James | 3:17 PM ET | 05-23-2007

My wife is currently in remission from her 2006 bout with Breast Cancer. It is such a pleasure for me to see her now- active, happy, and working in her garden!

Marion's Garden of Hope
Last year's garden was bleak,
A few annuals were all she could do
Mammograms and Mastectomies, Radiation and Reconstruction,
They took up most of her time.

This year's sun is stronger and brighter,
She's planting perennials now,
Marigold and Meadowsweet, Rudbeckia and
Rose of Sharon,
Perennials for all those years to come!

Hang in there, Caregivers,
Don

Sent by Don Winslow | 3:56 PM ET | 05-23-2007

I have been following your blog for a few weeks now and have been drawn to it ever since I found it. Thank you for what you are doing. My Mother and I could have really used this type of support network when she was diagnosed with cancer in 1996.

My Mom battled Stage IV Breast Cancer for 2 years and died in 1998 at the age of 55. I was just a few weeks shy of my 25th birthday. I was 22 when she was diagnosed and immediately took on the role of the primary and only caregiver. I'm not sure either of us really knew what we/she was in store for. Looking back it was definitely a hard two years. I was in my early 20s and as "mature" as I thought I was at the time - I really wasn't. I felt torn at times between wanting to do the "normal" things 22 year olds do - starting a career, dating, etc... but I also wanted to be there for her. It had basically been her and I for my whole life so of course I wanted to help her. And even though she never said this directly I know she didn't want to burden me yet she did need me. After she died I had a lot of guilt wondering and hoping that I had done the best that I could and felt bad that there had been times where I had felt torn or had a meltdown or two. There are so many conversations that I now wish we'd had but at such a young age it didn't cross my mind plus I held out that secret hope that somehow, someway she would be okay.

Thank you Leroy - even though it has been over 8 years since she passed away it still feels so good to talk about my Mom and what we went through.

Sent by SA | 4:11 PM ET | 05-23-2007

Leroy, Re your story about the pilots' families in Italy, Milton said it best a long time ago: They also serve who only stand and wait. Cheers, Tom

Sent by Tom K in Sydney | 6:27 PM ET | 05-23-2007

Thank you Leroy for your comments on caregivers. I was my husbands caregiver for 18 months and would not have wanted it any other way. Sadly, he passed away last December and suddenly I was at a loss as to what to do with myself. Our children are grown, married and live in other states. I have gone through all of the what ifs and played that entire game, but deep in my heart I know I did everythng I could possibly do to keep my husband as comfortable as possible. He always thanked me for everything I did. I had people tell me that I should have had professional help in for some of the things I did, He didn't want it that way and neither did I. My pastor told me after Rob's passing that the pain I was experiencing was no different than what Rob experienced except there was no medicine to help ease the pain. I totally agree.

Sent by Cindy | 3:04 AM ET | 05-24-2007

Thanks to each of you for your contribution to this thread.

It was very helpful for me to see my cancer from this perspective; it opened my eyes to what those in my family might be experiencing. I don't normally think of myself as being "selfish" but after reading some of your thoughts, as caregivers, I realized I have been selfish in my thinking as there have been times that I've said to my husband, "This isn't about you - I'm the one with cancer."
(Kind of smacks of self pity and self righteousness doesn't it?)

I'd been waiting for almost two weeks for my husband to ask me about my recent CT scan and he still hadn't, so I confronted him about it yesterday and he just plain out admitted he was scared. We talked a little about how his not asking made me feel but I have to say that reading your comments here helped prepare me to consider his feelings as well and although I don't see him changing his way all that much, I feel that burden of resentment has been lifted from me and that is freeing.

The road ahead isn't easy for any of us but the support we can give to one another certainly helps! So, thank you to you, Leroy and to all the rest of you as well for adding your experiences, thoughts and suggestions!

Sent by Vicky (NY) | 3:58 AM ET | 05-24-2007

Hi Leroy,

This is for Tim. Caregivers frequently ignore their own health while caring for others. They are so busy, or stressed having to deal with things they have never had to take care of, doctors appointments, car care, meals, sleeping, anything that was normal them are placed to the back of priority. The caregiver takes the back seat and yes, major illnesses can be missed leading to problems and loss for others.

Sent by Susan Chap | 8:19 PM ET | 05-25-2007

Dear Leroy,

In my experience, we may have different roles we fill within each other's life cycles.

Let's start with friends: some there for an instant; others for a time; some for a lifetime...all are still friends.

I then think to the time when my uncle was diagnosed with a very agressive esophageal cancer. He went through therapy; he and his wife through counseling. My brother was there through a fluke of work that allowed him to share life. I was not able to be there. I was envious of my brother, there month after month in friendship and love.

But, it was my role to be there in the end...to be a guardian through his transition. I traveled to LA when I knew there wasn't time...I met my brother at the airport and we went to the house. As my brother and I walked in, 12 hours before his death, in a fleeting moment when he was Stu, he looked at me and said "Oh, God." It was at that moment, I clearly understood my role...and to this day am grateful for it.

My brother retired to his room and stayed there until the funeral. My aunt went to sleep that night knowing Stu was in good hands. His dear friend Bernie and I sat with him...sharing stories, life, and the firey crimson transition into what this physicist can only describe as "else."

My point is that we all have ways in which we express love and experience certain loves and friendships in our lives. Perhaps it is true that we may be disappointed in the reactions of others, but we must remove the ego from feeling badly about it -- it is not about us but about the battles being waged in someone else's life and soul.

In my life, what I have come to know is that we are each an integral part of all that is. We are not alone; but connected to the earth and connected to one another in space and time.

Namaste,

L Barnes

Sent by Lainey Barnes | 7:49 PM ET | 05-27-2007

Leroy - very well written. Shortly after I turned 50, Kaiser (my provider) scheduled me for a sigmoidoscopy where they found several polyps. They then scheduled me for the colonoscopy where at the last turn I heard my doctor go oh. I told him that didn't sound good and sure enough I heard what I didn't want to hear and that was cancer. They got me into surgery pretty quickly and removed a foot of my colon and the surrounding 20 lympth nodes. One came back cancerous so soon as I recovered from the surgery off to 6 months of chemo. I elected to participate in a trial and was given 3 drugs every other week for 48 hours at a time. To be honest I don't remember much of that year and hence my comment. My wonderful wife took care of me through the whole process. I slept a lot especially during the last couple of months of the chemo. I do remember waking up from the fog and seeing her just watching me. After the chemo was over she told me that the hardest thing was not having anyone to talk to about my cancer. Interestingly Kaiser has a great program for the person that has cancer but nothing for the care giver. I am thankful that she was there for me but I feel badly that she had the burden to carry alone.

Sent by Richard Welch | 11:25 PM ET | 05-29-2007