Life does not end with a stage IV diagnosis (really!)
Comments
-
Gatorgal, congratulations on such a joyous occasion. What a beautiful girl. Best wishes to your daughter and whole family. Thanks for sharing.
0 -
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!
0 -
GatorGal,
No secret that I am quite passionate about this thread, not only as a place to tell my story, but as a place for others to gain hope and inspiration when faced with a stage IV dx. My wish is for everyone, newly dx'ed ,exceptional responder or struggling, to live life and embrace happiness as well as they can each and every day.0 -
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!
0 -
Artist, thanks for sharing that. So, I've got to hang around at least 7 more years so little Delilah remembers me! I'm working on that!
0 -
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!
0 -
Oh, artist, I would so love to see that 11 year old graduate. He is the coolest kid. He's growing his hair to donate to locks of love. This is his second time trying. He gave up the first time when kids made fun of him. He's not giving up this time. He actually wants me to have a wig from his hair but we might have to go somewhere else for that. I don't think locks of love lets you choose who gets your hair. His favorite color is pink. I don't have the heart to tell him how I feel about pinktober! He proudly wears the breast cancer ribbon for his grandma. So, if I get to see him graduate, Delilah will be 7 and she will most certainly my have memories of me. That would be pretty great. I am having a biopsy next week and they are sending me tumor for testing to see if I'm a candidate for targeted therapy. I'm keeping my fingers crossed! I might just live long enough for a cure!! And Caryn, so many love this thread and find lots of hope and inspiration here!
0 -
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!
0 -
I haven't gotten a date yet for the biopsy. My onc laughed and said he never heard of anyone being excited about a liver biopsy. I just want it over with. I have no idea how long it will take to get the results from the testing. I know I'll really be anxious during that wait. Artist, I worked in a middle school and got to see a lot of bullying and teasing over the years. These kids (and adults, too) have no idea how even a small negative remark made can hurt for a very long time. And we have such good role models in our politician Said
0 -
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....
0 -
Hope all are well. Ann Silberman, of But Doctor, I Hate Pink, recently posted about those who fake cancer. Several responded with "what to look for to spot a faker". I fit quite a few of the criteria, having never had chemo, lost hair etc. It made me wonder if some think I am faking or exaggerating my bc. Judging how ill someone is or isn't, based on appearance, seems a rather slippery slope.
0 -
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.
0 -
I know that I don't look like what a stage IV cancer patient is supposed to look like. My PCP has told me on several occasions that no one would know that I have cancer unless I tell them. I had to go & see my original BS after my rediagnosis & even he as a Dr told me how good I looked, he expected to see a dying woman. If Dr's can't tell from looking how can anyone else??
I have an infusion every 4 weeks, when people ask me if it's chemo, I used to try to explain to them what it was, now I just say yes, it's easier. People think if you're not having chemo then you don't really have cancer.
0 -
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.
0 -
You could answer matter-of-factly something like, "thanks, I'm having a good response to treatment." which is what I do.
I think it's the media that's created this characature of what someone with cancer is "supposed" to look like. Usually the most dramatic side of cancer is portrayed (gets viewers attention) so that people think that is the only true reality of it. When people see a person dealing with cancer on a daily basis, in "real" life for months and years, it's often a revelation.0 -
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
0 -
Well said, Lynne. Heck, I didn't even know there were different types of bc until I was dx'ed! I ran into an old friend last week.He is married to a woman who works in my my very small school district (read: we all know each other). He went on and on about how everyone looks up to me and what a great inspiration I am etc. Although I appreciate the compliments, I told him that I really had no idea why why I was doing so well and that until such time as I'm not able to carry on normally, I fully intend to live my life to the fullest. I find it difficult to think of myself as inspirational or special, since I haven't done anything to actively "battle" cancer. No drastic overhaul of diet or lifestyle, no miracle potions, I have just been very lucky.0
-
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.
0 -
Yup. People think you're either cured or dying. They must feel confused. I say, "Well, the drugs are hard on me, but my tests look good." Hopefully that conveys my current reality in a suitably ambiguous way.
0 -
Shetland, that is such a great answer!
0 -
Perfect answer, Shetland!
0 -
Thanks.
0 -
I love that answer Shetland
0 -
sometimes I say I'm just trying to stay alive til they find the cure!
0 -
People are constantly asking me if I'm "done with treatment", so I say, "I'm metastatic. That means I will be on one treatment or another for the rest of my life." A lot of people don't know what metastatic even means so I say, "They used to call it terminal cancer."
0 -
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
0 -
hi ladies. I found myself under a very dark cloud this evening. I am across the country from my family and am very sad. I don't want to die, to put it bluntly. I just don't know how to think I can overcome this dx. I am sitting here with my dog thinking how sad she will be when I'm gone. Ugh, sorry to be Debbie downer, I don't have anyone to talk to. Query: if disease is gone from the liver it might be possible to live for many years with a met to one rib? I hope u all are well and happy. I am trying to look for any Ray of sunshine.
0 -
LvinAZ44 -- It is possible to live a number of years with mets in general. I don't have bone mets, but I have a friend who does that is heading towards 4 years with them. There are many others on this board that can speak more directly to your question, and there are rays of hope all through these boards that have defied statistics.
0 -
How is the quality of your every day activities? Are you limited in what you can do?
Do you take an antidepressant? You may need one to help you cope. Please ask your doctor to prescribe one. If you already take one, realize it isn't effective and you and your doctor should discuss this to see what changes will help.
Do you journal? Try writing three pages of your thoughts every day. Whatever you feel. Also, write a list of things you can do when you find yourself in these very depressed times. I have a number of ways to distract myself and get my thoughts off of impending doom. i tell myself that this is about living with the disease, not dying from it. I focus on the good in my life here and now and cut off the thoughts off how things could go bad. We don't need to go there any sooner than need be. I also,read many different types of inspirational books. Not just about cancer, but how people have overcome all different kinds of obstacles and tragedies to move forward with life. I like books better than internet articles because they delve deeper into a story. Movies That inspire can also boost the spirit, and you need a steady diet of them. Chose to watch an inspiring movie every evening.
By actively fighting off the depression, with meds and actions, you are taking control of the situation. You are worth it.
0 -
Hi Ladies!
Popping in for a question. My ct scan showed 3 lymph nodes in my abdomen enlarged and sketchy. They are not huge, but enough to be picked up. So, I requested a pet scan or biopsy before treatment starts and my doctor has agreed.
Did anyone have positive lymph nodes show up outside of axillary or breast area? I had 1/15 positive node at 4mm and 1mm mass under nipple, after my 2cm mass all in right breast.
Thank you so much and Happy Friday☀️
Cheers,
Michelle
0
