Life does not end with a stage IV diagnosis (really!)

Oh dear Gator Gma!!!  Congrats on your beautiful Grandaughter, Delilah!  She is so precious & I love that she's looking into your beautiful, joyful eyes!!!  So happy you had the birthing experience!!  I witnessed our 2 grandsons' births (youngest DD), DH & I both witnessed our youngest grandaughter's birth (oldest DD), and witnessed a very long labor with our oldest grandaughter's birth (DS), until they decided a c-section was the only way to get the chubby baby outta her tiny mama!  I can feel your love at being able to impart your love & wisdom in nurturing this baby.  Such a blessing.  

Caryn, so happy your DD's tests came back with good news.  Now...on to growing that healthy baby!  

Gator, congratulations are in order all around! Beautiful granddaughter! Life is still so wonderful.

Caryn, I am so glad you started this thread. It's marked in my favorites and when I don't have a lot if time, one of the few that I check religiously. Thanks to all of you for your good wishes on my granddaughter's birth and my relationship with my daughter. One of my goals has always been to get things right with her before I go anywhere and I do believe we're on the right track. I appreciate the support I get here. The storm is a doozy but I've been able to hang out in my Jammie's today. It was our visitation weekend with my grandson but he has a stomach bug and his mom didn't want him spreading any germs my way. She is an awesome mom and though she and my son never married, she makes sure we get our Thomas time. He is 11 now and oldest of 5 grandchildren. Lucky for me they are all nearby and I get to see them frequently. He was 3 when I got my recurrence and I was afraid he wouldn't remember me. We've been making lots of memories with all our grands since then. Lifealter stage IV ....YES!

Well, you hit the nail on the head with that idea Caryn! Nice thread for sure. Gatorgal, I so envy you having those grandkids! One of my biggest dreams in life right now! Just FYI, I was probably 7 or 8 when my favorite grandma passed and I remember her and the good times we had quite clearly!

Gator, i was thinking more of your older ones, but yes you have to go AT LEAST 7 more to watch the 11 year old one graduate!

Boy, if we could only impart how unimportant other people's opinions are to these young ones. I work at an elementary school and it hurts my heart when kids are influenced by the meanness of other kids. I wish I convince them what a small part of life it is and one day it will seem so trivial. Your grandson sounds like such a cool kid! I love that age in boys! I am crossing my fingers for you to qualify for targeted therapy and it lasts for many years until we all realize a cure! In this day and age it is completely possible and I hold out hope every day. I LOVE the name Delilah and was in bed the other morning just laying there listening to that song by "The Plain White Tees". Such a simple beautiful song......thinking of you during that biopsy!

Very true Gator, even small remarks can cut like a knife. It doesn't help that I am extra sensitive about this since my Dx......I had a biopsy when I was first diagnosed and it wasn't too bad actually. They freeze up the area with this spray so I hardly felt anything for the most part. I had a little minute of "uncomfortable" and then it was over. I will probably have to do another at some point just to see if my HER status changes down the road. They wanted me to do one when my liver enzymes were going nuts but said no, I wanted to wait to see if quitting Ibrance brought them down which it has so far. Stephanie, I am only 6 months into this but I get sort of a burning sensation around my liver and sometimes a sharp stabbing pain for a few seconds. Other times I just feel tender around my rib cage on that side. We spent the weekend in Carmel and did a giant hike and I was absolutely exhausted by the time we got back. Can tell things are wearing me down....

I agree. There was a thread here once titled something like "invisible illness" which is a good description for many of us. And someone once mentioned carrying a cane even tho they didn't need it much, not to fake people out, but it signaled to others they were dealing with something and others seemed to respect that. I know I come across as being in reasonable health and I've mentioned how people not in the know think I'm supposed to be doing chemo or look like I'm on death's door. On the other hand, I'm not going around drumming up all kinds of funds for "the cause".

I don't know why, time after time after time, people continue to be bamboozled by fakers. My brain is always asking questions and picks up red flags. I've known of so so many people stealing from others through volunteer fundraising for various causes and organization in the Ohio Valley where I live that I donate very little these days unless I absolutely am sure the money goes to the right place for the right cause.

Even at my work place, all the time people ask me questions and look at me rather quizzically and make remarks like "Wow, you look so good". "Aren't you super tired?" "You're hair is so long!" I'm not sure if I should reply just thanks or "Yep, for now......". It's a weird atmosphere to be in all the time. I know most people are trying to be nice and supportive but it's odd.

I have to admit that until I was diagnosed, I didn't realize that many people with stage 4 cancer do not look sick. Like many other people, I assumed that they would be frail, pale, and undergoing painful tratments. Now I know better, but I understand why people's perceptions of a "cancer patient" are often inaccurate. There is little spoken about our plight, and even within our mbc community, there is no one accurate picture of what "we" look like.

I have been lucky so far. My life has not been changed dramatically. Let me rephrase that. My life has forever changed dramatically, but I am still able to do most of the things I did before my dx. I do know that things could change at any moment, and I cherish the time I have.

I don't mind if someone tells me that I look good. I just say thank you because I probably do look pretty healthy. If someone remarks that I will "beat this", then I do try to educate them about mbc because it is important to get the word out.

Lynne

Divine, that is a very good response. There is just a select few that keep pressing and picking at me for details in the middle of my busy office that start to irritate me. Also another good point Lynne, I was very oblivious to cancer facts before my dx which I have thought often about. I don't mind if someone tells me I look good, I just hate when someone exclaims "God, you are soooooo skinny!" Which by the way is not really true. yes, I have lost some weight but not THAT dramatic at all. exbrxn, I feel the same way. When someone told me the other day I was her hero I thought "I am just trying to get by and live my life. I have done nothing heroic.......just lucky. Thanks for giving me some perspective ladies, I do tend to get a little over sensitive to remarks still.

Shetland, that is such a great answer!

Thanks.

sometimes I say I'm just trying to stay alive til they find the cure!

GatorGal, that's a pretty true statement. I just finished reading "The Death of Cancer" written by a pioneering oncologist and that's sort of one of his trains of thought, to keep a patient living till the next big thing comes along, then repeat.

Susan, your comment is a great way to explain the word metastatic to those who are not in the know. Simple yet to the point. One could always expand on that by saying, it is when the cancer spreads to other parts of the body and when that happens, it is not curable