Thoughts as we approach MBC Awareness Day

I want to tell you a true yet timely story. I received a call from my son the other day. He was on a business trip when one of his associates received a call from his wife. She had just been told that her bc had recurred, and this time it is in her bones. The man had so many questions, and my son began texting me for information. I can only imagine the panic and fear that swept over that woman and her husband as he struggled to find the quickest flights home. He knew he needed to be with her. She felt lost and weak without having him there for support. The next day the questions continued from the couple to my son and then to me as the couple was told of treatment options. They were trying to make sure that what they were being told by her doctors made sense because they were too upset to fully process information by themselves, and they were too overwhelmed to do research. They needed help from someone like me, someone who has been through the nightmare that was just beginning to unfold for them. Luckily, their questions were about basic things that I could comfortably answer, and I think I was able to calm them just a tiny bit and let them know that they are not alone. I know they must still feel so lost. I still remember the day that I was told that I had breast cancer that had spread to my bones. I remember all the feelings I had - fear, guilt, sadness, helplessness, desperation, anger, ignorance. I also vividly remember that my DH immediately put his arms around me and told me that we would face it together. He has never let me down.

So it was, that through my son, I heard of one more person diagnosed with MBC. It is one more too many. How can we end this? I really want to know. Metastatic Breast Cancer Awareness Day is just two days away. We on this site are already aware. When will we be aware of a cure? When will we have an annual event to celebrate that MBC has been wiped out, eliminated, CURED?

My life has changed since my diagnosis. There are some good changes. I appreciate each day more than I used to. I say, "I love you" more often. I take more risks. I am less apt to let trivial little things bother me. I am slower to anger. I laugh more freely. I don't take myself as seriously anymore. I appreciate my family, warts and all. I eat better and exercise more often. I hope I have become more accepting and more kind. Don't get me wrong. In spite of the good changes, I wish I didn't have MBC. There are also negative changes to my life. I will need treatment for the rest of my life, and that is tough to accept. I am never more than 28 days from my next doctor's appointment and/or lab tests. I always worry about results of tests and scans. Actually, worry is not a strong enough word. I feel that the black cloud called progression is always waiting close by. I try not to wonder how much longer I will live, but you know how that goes. I have learned to like the word "stable" but dream of the terms "NED" and "NEAD, two terms that may never apply to me.

I have met many truly wonderful people on this site. It amazes me that there are so many people willing to help strangers without a second thought. Do you know how special you are? Your words move me. I rejoice when you post news of good test results, stability, and improvement, and I tear up when I read about pain or progression. I have suffered and cried to learn of lives we have lost. Some of the people we've lost had become dear friends to me. They gave me support when I needed it most. They gave me advice when they had knowledge I lacked. The losses are personal for me and serve as reminders of the ugliest side of MBC, a side I cannot ignore.

One more thing, then I promise I will end this way-too-long post. I want to thank you all for being here. You touch my life in ways you cannot imagine. Each of you contributes to these wonderful threads even though you might not realize it. You give me strength. You understand my issues as no one else can.Thank you, thank you, thank you.

Love, hugs, and prayers to all of you, from Lynne

Lynn, that was a beautifully written and honest post. I pray that you remain stable and that research will allow the dreams we all have of being NED or NEAD to become reality. Thank you for putting into words the feelings that many of us share

Fiddies girl,

Yes, too many women are still being diagnosed with metastatic breast cancer. I cannot say if we will ever be able to get that message out to a wide audience thru a media that insists in sanitizing the disease to make it palatable for the average American, and which seeks to minimize women's issues.

Still, knowing our words and our images about mbc may not always reach the masses, we can continue to speak up and speak out about mbc and reach out to those who need info on it when they find themselves or a loved one dealing with it.

Here is a video that was shared on another post:

I have tried to stay clear of the pinktober propaganda as much as possible this year. I have heard several radio promotions. Today I heard that although a cure is needed, the main focus of my state's bc coalition right now is on screening and prevention. (They went on to say that there is really no way to prevent the disease, and that although some eating and exercise recommendations are out there, nothing is guaranteed to prevent bc. I did like that part of the statement since I remember someone asking me if my MBC was due to skipping mammograms or not having checkups. You can imagine how that made me feel right after dx.) The radio interview made me sad to think that so many people still believe that it is acceptable that a cure is not at the top of priorities. I realize that screening is important, but I know first hand that screening does not prevent deaths from MBC. Many MANY of us with mbc followed all the rules and recommendations, yet here we are.

Claudia, I do try to educate people about MBC. I had no idea about it prior to my own diagnosis, so I can't blame people for their lack of knowledge. Those Juliesque commercials do little to educate. I suspect that they do generate requests for prescriptions from patients, but that's probably it. One of my friends did ask me if I am taking Ibrance. She knows that my blood counts tank every month, so at least she is paying attention.

I think that more research projects are beginning to focus on MBC and a cure. Unfortunately, It is likely that no one cure will fit every case of MBC. It seems that we are still learning how many unique characteristics exist for this disease. We see again and again that a treatment that works well for a while for some people is useless for others even though all the people receiving the treatment appear to have the same "type" of cancer. We are still scraping the surface. Since there are so many areas of research now, I am hopeful that cures for all will be found.

Better treatments with fewer side effects until a cure is found? I am all for that! We need more and better treatments that work longer with few or no SEs.

Devine, Thank you for reposting that wonderful video here.

Shetland, Thank you for mentioning our loved ones who suffer right along with us. I feel guilty for putting my DH through this even though the situation is beyond my control. I know he wants to help me, to save me, to make me well, and he feels helpless and frustrated. I can see it in his eyes everytime test or scan results aren't as good as we had hoped for.

Awww, 50'sgirl, what a sweet post. I have so many of the same feelings. I tear up thinking about all the ladies here. I am truly overwhelmed by the love and caring on this forum. People that not only understand but actually care. Each one of you are in a special place in my heart. It's amazing that even when someone is not in a good place, they still will reach out to help someone else. Amazing. God must have a very special place for people like this. Take care ladies. Praying for a cure.