Cancer Survivors Network

Thanks, Traci. I do feel very alone most of the time as I'm keeping such a brave face for my kids.

Mostly, thanks for jotting a note. I feel better knowing that you reached out.

Lynn, thanks for reaching out. I feel a tiny bit connected to something positive when I see that little number next to my post. You make a good point about being aggressive about my emotional health. I'm just not sure how to go about that. I guess being here is a start.

The emotional health arsenal is pretty varied and what works depends upon the individual. I sampled just about everything, including being here on the board and receiving prayers, advice, and support from my bc sisters.

My cancer center (1 1/2 hours away) has a social services arm that includes counseling, art therapy, massage, visualization classes, yoga, and aromatherapy. When I could, I took advantage of those services. Then I found those services in my community and they have really helped me. The ACS offers a support program, but where I live is very rural and so those services are pretty much out of reach.

People in my community and where I work really rallied and I welcomed all that support and prayer. It was transformational and humbling to feel how closely knit we all are!

xoxoxoxo Lynn

Thanks, Marcia. I did tell them the cancer came back and that I had the lumpectomy. They were thrilled that I wasn't going to need chemo, just radiation. (Which, after the scan, they decided I didn't need -- although now that I'm typing this, I'm wondering why." Then, yesterday, oncologist started talking chemo since we don't know if the hormone therapy is working.

The girls are so internet-savvy, that I feel like if I tell them anything, they'll start googling and finding out some very heavy information that I don't know if they can handle. I know I can't handle it.

That's a good point, Linda, about being afraid that your daughters will start googling on their own -- but maybe use this as a way to teach them a little about discerning googling.

When I was first diagnosed, both my surgeon and oncologist forbade me to look at any site except the ACS' site. They talked about how other sites may have unreliable, inaccurate, and/or unverifiable information, but also emphasized how, when you put something out on the internet, it can stay there indefinitely -- cancer treatment has changed so much, the information may have been good, accurate information at the time, but may now be totally out of date.

So I would suggest maybe talking about some of these issues when talking with your daughters.

Traci

I have a client who's wife found a lump on the same side as her previous breast cancer 10 years prior. It was not on her breast but about a food down from her underarm. He's a doctor. He said, "I just hope if it's cancer it is a reoccurance of her breast cancer because that is treatable". I was shocked with his answer but he went on to say that for many women Stage IV breast cancer can be treated as a chronic condition and his wife could survive for many, many years. During those years, there will be more and better treatments available which could extend her life further. With many other cancers, that is not the case. I'm sure this conversation sounds odd because it did to me, too.

I'm passing that on because I thought it was encouraging and he is a doctor at Yale New Haven Hospital. He works with a women who has been living and working with Stage IV breast cancer for 14 years. She is a nurse practicioner. Her children are now grown and one of them was recently married. Her children were young when she was diagnosed and she feared that she would not be around to see them grow up.

That said, none of us knows what the future will bring...healthy today or not. My cancer was found at Stage 1 but I'm sure there are many who were diagnosed at Stage 1 who are Stage IV today. Cancer is sneaky. My plan is to enjoy each day and to appreciate all my blessings while I have them.

On another note, there are stories of people who went into "spontaneous remission" and are cancer free years later. Never give up hope. My uncle was diagnosed with pancreatic cancer (5% cure rate) and told he had 2 years to live. He had what treatment they had to offer then went about his "happy" life. He lived 12 good years! In those years, he traveled and played golf whenever he could. He was in his 80s and passed away of heart failure with his wife at his side.

I'm sure you will have lots of life ahead of you. We all fear that cancer will take our tomorrows. Let's not give it our todays.

Hugs.

Roseann

Dear Roseann,

What wonderful stories! Thanks for sharing them with me. They were a good pick-me-up. I need to make "never give up hope" my mantra. I think I should just repeat it to myself a thousand times a day.

A doctor friend of mine says, "If there's a 1-5% cure rate, why can't you be in the 1-5%?"
Some days I feel strong enough to strive for that. In fact, when I was in my oncologist's office, I remember being very confident!

I love your "Let's not give it our todays" comment. It certainly is taking THIS day. I need to shake myself.

xoxo,
Linda

Thanks, Traci. That's very good advice. I hadn't thought about the "expiration date" of information. The ACS site is very encouraging. I have found it to be a lifeline.

xo, Linda

Dear Jenny,
Thank you for writing. I feel so much better today than I did yesterday before I got to this site. You all are wonderful.

I'm still teary, but some of them are tears of gratitude, so it's not all bad.

Love, Linda

Dear RE,

I'm so glad you read my note and responded. Your fight gives me courage and energy. Part of my problem has been my need to know percentages, odds, etc. I ask all of those questions, I just don't like what I hear. My oncologist is affiliated with Johns Hopkins and he's one of Maryland's best, and he's a straight shooter. When I asked him, "What's the worst case scenario?" He responded with, "Years, but any number I give you is too small when you're forty-eight years old." No sugar coating.

I am enjoying a bit of relief from Ativan, but I might need to take it more. I usually try to ration it out since my GP only gives me twenty a month.

How did you discuss your recurrence with your teenagers? That's one of my biggest problems right now.

xoxo,
Linda

My situation was a bit unique because cancer runs rampant in my family so they were used to it. Their grandma had been dealing with it all of their lives. By the time I got it they viewed cancer as a chronic illness that required treatment that would make me sick then I would get well again. I will tell you that I just gave them the basics, I told them I had cancer and I was going to have treatment. I never told them I was a stage 4, they did not know this until recently. It was best that way, they had enough on their plate just being teenager. We worked as a family unit to get better. We had chemo weekend where we cleaned the house like crazy so I would not have to worry about it while down, we had open discussions and above all we tried to go on as normally as possible.

I am 48 too. My son was 14 when I was DXd and he took it just great, I was just honest with him but played it down a fair bit.. I am so sorry for this nightmare you are going through AGAIN! It just isn't fair. Anyway Huge Healing Hugs to you and I am so glad you found us. Jxxxxxxxxxxxxx

I've been that way with my girls, too. Facts, but nothing overwhelming. It's exhausting keeping up the brave face, though. It all comes down to one question, "Are you going to die?" This time, I told my middle girl that none of us has a crystal ball and that my doctors and I are doing our best to beat the crap out of it. That seemed to satisfy her . . . for now.

Dear RE,

I love what you wrote: "You are not a number, you are LINDA and your situation is unique to you." I might print that out and tape it to my mirror one of these days. In any case, I'll be back here to read it again and again. And I will try to dig in my heels and FIGHT!

I agree with you on not telling the kids the the cancer is "Stage IV." My middle daughter asked me that, and I truthfully answered that the doctors had not given me that information. I tried to explain that Stage IV means so many things to so many different people that doctors don't like to slap that label on it.

My oldest is a Senior in HS, and I don't want her to limit her college choices based on my health. My middle is the sensitive one, the one who can see through my fake cheer on a bad day. My youngest is only thirteen. She's the one I worry about the most. The other two are on their way out of adolescence, but she just got in!

Peace and thanks again,
Linda xoxo

Hello...I also have breast cancer with mets to my liver. I was diagnosed in August of this year, I was 39. My life has been a whirlwind. I come to this site several times daily for inspiration and hope. The ladies here have comforted me so much with their posts. Stay strong and keep positive.
Prayers to you.
Deb

Hi Deb,
I was diagnosed about a month after you. My boyfriend said to me today, "Geez, I can't believe it's almost Thanksgiving, where did October and November go?" Oh, I know exactly where they went . . . in that whirlwind you mentioned!!
Prayers back to you. :)
Linda

This is a crappy club to have to belong to...but there we are, surprisingly enough surrounded by the most amazing survivors in the world, just keep coming to our dear sisters in pink here and you will find so much support and comfort.

I am so very sorry for your reoccurance. I really can imagine your despair at this news. But hang in there, you will again come out a survivor on the other side!
hugs, jackie

Thanks for the hugs and kind words, Jackie. I feel better being here. I think for the last two days this computer has been a lifeline!

Thanks for your prayers and your "crossings!" I don't know if the onc is going to let it go on for very long if the markers don't come down at all this month. I have heard that the chemo I might take is not as bad as the AC from the first time, so that's a tiny positive. Did you have your ovaries out?

Peace.
Linda