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

Karz72

wonderful imagery Dune! I'm sure you made an awesome superhero!

SusaninSF

Rena,

Thanks for posting. I hope no one on these boards ever feels that they need to stay quiet if they're doing well. Particularly newbies need to hear that there are a range of outcomes from this disease. A friend of mine in my MBC support group has been metastatic for 19 years, others have so far lived 15 and 8 years! And there were significantly less treatment options 19 years ago. After being initially diagnosed with brain, lung, bone, eye and breast tumors, I thought the furthest out I could plan was two years. Now I am a year and four months out and close to NED. Things can change for the worse rapidly but I don't worry about it. Best to live in the present, not the past or the future. I sold my five-year-remaining term life insurance to a company willing to pay me 65 cents on the dollar today for the chance to make a dollar if I die before 2020. Can't use the money if I'm dead anyway.

Hugs, Susan

KiwiCatMom

Susan- that is awesome news! I remember when you posted like a year or so ago. And you're close to NED! That makes my day!!!! Congratulations!

Dune - I want superhero video!

I got offered the senior citizen discount too a while back, and first was annoyed, then was like "I'm saving money!"

Need to go back and catch up with everyone.....

Hugs to all,

Terre

exbrnxgrl

Susan,
So very good to hear from you and wonderful news about how your tx is going. I agree that those who are doing well don't need to be made to feel that they should be quiet. Sadly, there are a few who think one can't or shouldn't express certain things with stage IV and have told some of us, in rather vulgar terms, exactly how they feel. I think it's best to report such things to the mods, block those folks and simply carry on. I go back and forth between stepping away from bco, because I would never put up with people like this in real life ( I actually don't know people who speak to others so crudely) and wanting to stick around to provide hope and another side of stage IV reality, especially for newbies. Anyway, I'll hop off the soapbox but again, I am thrilled to hear from you.
Caryn

SusaninSF

Thanks Terre and Caryn! Only one tumor in my lung is showing up in contrast and the SUV is only 1.5. Apparently, "normal" is anything 2.0 or lower. That tumor used to be 4cm and now it's only 2.7x1cm. Eye tumor gone, retina reattached. Femur tumor gone. Brain tumors gone or dead. Breast tumor still there but doesn't show up in contrast. Tumor markers have been in normal range for the last 5 months. Feeling healthy and energetic. Not too many others here have had such widespread metastasis from first diagnosis but there is hope even for those as far gone as I.

Hugs, Susan

KiwiCatMom

That is amazing and fantastic!

Nel138281

Susan - Wahoo Congratulations and a long time doing well

Xavo

Susan, thank you for your wonderful post. Awesome! Great news for all of us, particularly for the newbies such as me!

AliceS

Fabulous and gives us all hope down the line for whatever we face. Celebrate--do something special that you truly enjoy!!!!

KiwiCatMom

I almost want to start a give a little page to buy a case of champagne for Susan! Like really good stuff!

SusaninSF

Thanks everyone for your kind words!!! Really warms my heart!

Thankfully, I get to do stuff I love every day.

Hugs, Susan

Anonymous

Susan - that is wonderful, and definitely helpful for me and others to read!

Barb312

Love this site. So uplifting. Even though I am old, I still love life. I still color my hair blonde and play golf with many bone mets . It will be 4 years soon. My radiation oncologist said 5 years. WRONG

KiwiCatMom

Congrats, Barb! I still colour my hair blonde. My original radiation oncologist said I wouldn't see 60. My new one thinks I'll see 70.

AliceS

To Barb and CatMom---I admire your spirit and optimism!! AND you CAN go on indefinitely. There are new drugs coming out all the time--my Oncologist says mets are being treated now as a chronic illness and you can survive for a long long time!

Best wishes and let us hear more good news from you periodically! Makes us all feel better!

KiwiCatMom

Thanks, Alice! My MO thinks mets will be a chronic condition like diabetes within the next couple of years. Let's get a cure NOW for those who aren't NED and so those who aren't Stage IV never have to be.

exbrnxgrl

👏👏 I second that

Andi67

Susan - Welcome back and congratulations! I don't think we'd heard from you in a long, long time.... you were busy completely healing yourself! Truly amazing and a perfect story for this thread.

Rena - I read your story several days ago and have been thinking about you ever since. I am only three years out from my diagnosis. I didn't go back to work (after a month of radiation and 8 weeks of chemo...I could barely move) and have spent the last 2 1/2 years at home with my kids.... my attitude was much like yours... I didn't want to be in an office if I only had six months left. I did plant a garden (two big ones), volunteered at the kids schools, took great vacations, spent a lot more time with my friends, etc. Like you, I have scans every six months and I'd be waiting for the bomb to drop. But scan after scan, they came back clear.... along with the one I got back yesterday. (yay, and whew, for another six months...) I was standing in the kitchen in my pajamas last week making pancakes for my teenage sons and all of their friends (they were there with me).... and I thought about how lucky I was to have had these last few years off and to have moments like those. However, like you we were in a two income family.... so a few weeks ago I finally made the decision to look FARTHER ahead and actually return to work fulltime... in an office... getting dressed up like a grown up. I signed a ONE YEAR contract. I'm not sure where I am going with this... maybe just to sympathize with you and encourage at the same time. I will probably always do things sooner than later at this point (buy that car, take that vacation, do that adventure with my friends, let my son get a Newfoundland dog, etc...)... it's just programmed into me.... "why wait?" has become my new motto.... but I am not so sure there is really anything wrong with that.

Hi and hugs to everyone else!

XO

Andrea

KiwiCatMom

Well said, Andrea! Why wait? None of us is guaranteed a tomorrow, whether we're diagnosed with Stage IV or have good health. And I am very jealous - you have a Nuffie? I love them! Huge snuggle dogs! Wishing you all the best at going back to work; I'm sure it will be a bit of a shock, but that would be true regardless of your health situation. And congratulations on another good scan! Whoo Hoo! You go girl!!

dunesleeper

I cut and paste your NED stories to share with my mother. I hope you don't mind. The main thing is that I get the message.

However, I am NOT taking that dexamethasone anymore. I don't sleep right. I've gained 5 pounds. All I want to do is eat eat eat -- and to tell you the truth I don't really know what to do with myself when I'm awake. It's not like it is my house and I can get up and clean and rearrange furniture (which I did once upon a time. No, I just hide in this bed (haven given myself a 2 year (must be down to 1.5) year plan by now.))

If I have some time left, I'm going to have to put my foot down and prepare the foods I want to eat -- and if it takes up too much room in her refrigerator, then maybe it's time she moved the hell over. At least if I had my food I would have healthy choices of what to eat when I need to nibble.

Very encouraging.

artistatheart

Hahaha! I think all the time about how we need a like button with so many uplifting comments! LIKE!

AliceS

I agree thinking we could use a "like" button. I check in often since this is on my mind daily since I was diagnosed. Feel we're together on this journey that we hope turns out well for us.

Lynnwood1960

We definitely need a like button for all of the encouraging stories we read here

josalive

Andrea - thank you for that post! I was newly diagnosed in February and have made it through chemo and surgery and am starting radiation next week. Before cancer I was a complete workaholic and much of my life was focused on climbing that career ladder. After my fourth round of chemo I just had to let go and take some time off work. I was supposed to return on August 1st and made a last minute decision not to go back. Now I am without a job and haven't felt better. I just really need some time to focus on my life without the stresses of work. I can only imagine how many memories I'm going to build as I spend my days raising my 3 young kids. So many of my friends and family can't believe I've given my job up and are sure I'll be back at it in no time... But I think cancer has really changed my outlook on life and my priorities. I LOVE your 'why wait?' Motto. I have a lot of living to do and like all of us am not sure how much time I have. So out with the old and in with the new. And if I have results like you I might consider getting back to my career as well in a few years. Good luck!!!

NYCchutzpah

Josalive contact social security and see if you can get on disability;

diana50

Yep

50sgirl

I like that, Diana.

Lynne

exbrnxgrl

Diana,
Thank you. Not a thing wrong with feeling that way 😀 .

steelrose

Yep, Diana! COURAGE:)

KiwiCatMom

Great post!