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

mara51506

Thanks so much KTF, I appreciate you letting me know. It is definitely something that must be dealt with quickly and am glad to hear your friend has not had any bad effects. Thanks again. There aren't enough good news stories available, just the horrible ones. I definitely appreciate you taking time out to let me know this. It does encourage me a lot. I am getting stronger as we speak which is pretty good after only a week and plan to keep pushing forward. Just have to wait for appointment with MO to see how we keep me NED below the neck going forward.

Lita57

Shelley, your wonderful post was truly inspiring!

As a newly dx'd Stage IV'er from the get go, I'm still struggling with "accepting" all that Stage IV is. I actually had a fairly decent weekend for a change (of course, this was my "off" Xeloda week...tomorrow I start Cycle 7). Some dear friends came over yesterday afternoon and cooked a wonderful dinner for my husband and me. I pushed thru my ever-present fatigue and tidied up the house a bit in anticipation. Today I went shopping by myself. I love those times in my car because I almost feel "normal" again while driving. So my mind wasn't on "Mr. Cancer" quite as much these past couple of days. I even told my friends that I really didn't want to discuss the latest developments between me and Mr. Cancer. We left him on porch, outside the front door.

I agree with you 100%..."I don't want to be on boards that are overly negative or altruistic. Just one like this, that strike a balance between realism and optimism."

I prefer to hear people's success stories because it gives me hope. Yes, there will indeed be bad days, and I've had more than a few of them...dealing with the pain of my spinal mets and the inconveniences of my SEs, but I'm assiduously trying to live in the "now," and take it one day at a time. As Mr. Cancer gets more deeply entrenched in my body, I know that things will eventually get worse, so I must enjoy these days...back pain and all, while I can.

I must press myself to stop framing my new reality as "dying from cancer," but rather "living IN SPITE of cancer."

As painful as it was, over several days, I put up my favorite autumn decorations and garlands so I can enjoy them now because who knows where I'll be next year at this time. None of us knows precisely how much time we have left. [Heck, even those without cancer.] Constantly wallowing in despair over this disease isn't going to help any of us. It's wasted time. As the vermilion, gold, and burgundy leaves fall to the ground and shrivel, so will we when our time finally comes. So, these last brief months (or years) are our time to dazzle the world with our own glorious autumn colors before the wind snatches us up and carries us away.

Once again, thank you for your uplifting post.

Lita

Lita57

I forgot to add Shana Tova, everyone!

With Rosh Hashanah in mind, I'm dealing with my "new" reality as another year is upon us.

May it be a wonderful, healing year of NO more progression and knocking back Mr. Cancer for everyone here.

Lita

exbrnxgrl

From my sweet grandson:

Max_otto

Exb...,

A lovely grandchild.

Ladies, I have a question.

How do you respond when you reveal your stage IV Dx and the person responds by stating "you don't look it", I feel somewhat defensive and start talking about how well the hormonal treatments have worked for me. I don't advertise my Dx, however, I don't hide it from other medical personal. My family and a few friends know my situation, the family is good, but friends that do know will say when they see me, "wow, you look great".

I wonder what are you supposed to look like, currently I am stable, but every month blood tests, every 3 months scans. I'm hoping if my next scan is good, I could move to doctor visits every 2 months. What I've realized is anxiety is always present, sometimes if I'm busy enough I don't think about mets, but every month when I'm waiting for results I can feel my tension rising, fortunately , I see the results before the doctors visit, so I can be calm. I'm happy "not to look it" , however, it's a good thing they see me clothed.

I'm venting,

thanks.

Kathy

exbrnxgrl

Simple, I just say, "What do you think stage IV looks like?" They usually don't have an answer. I then follow up by letting them know that stage IV is far more complicated and diverse than a weepy movie stereotype.

Lita57

Kathy, I get that response ALL the time. Kinda ticks me off that they're not that observant. My face and hands have COMPLETELY changed. (HFS and weight loss) Yep, I guess having red, shriveled, peeling hands looks great according to them. Or maybe they say we look great because they thought we were too fat (or skinny) before?

Recently, I just started saying, "Hey, just because you're dying it doesn't mean ya can't look great, right?!" Shuts 'em right up and you should see the look on their faces, ha ha. It gives me a little boost every time I do it.

For Heavens sake, we're not dead yet! And most of us will continue to look fine until the very end stages, and at that point we probably won't be going out in public anymore either.

If you get on Hulu, you can pull up videos on "What not to say to a cancer patient," and hear the outrageous/insensitive things people say to us.

Have a great week,

Lita

3-16-2011

Kathy

Good question. The " you look great" response does drive me crazy. For my own sanity, I imagine the person making the comment has decent intent likely mixed with their own fears. I simply say thank you and move on to a new topic.

Love the Miles picture.

exbrnxgrl

Thanks liking Miles' pic. He is so happy and adorable that I could just eat him up

I agree that saying "you look great" carries no ill intent. After all, how are stage IV cancer patients portrayed in the media? Thin, pale,bald, perhaps wheelchair bound. And although this may be true or some, it is not true of all. Who would imagine that this perky, happy first grade teacher, with all of her hair, who does PE with her students daily, has stage IV bc?

To be honest, before I was dx'ed I thought all stage IV patients did look sick! Sorry that I've had to learn differently via personal experience, but now I know better.

Lita57

Caryn: I think a lot of us used to think of Stage IV patients that way...we have movies like "Steel Magnolias," etc. to thank for that. My own mom who passed from Stage IV soft tissue sarcoma forty years ago actually looked pretty good up until about the last month or two of her life.

We have way more options now, and since we're a different generation than our parents, we have better attitudes and outlooks. I remember as I was growing up, women who were in their 40s looked really old. They started dressing like dowdy old grandmothers and gave up on their hair and skin. (Maybe it was just my neighborhood, I don't know, ha ha.) Our generation is not letting themselves go. Some of our cancer-free sisters look absolutely fabulous even in the post-menopausal years of their 50s and 60s.

And from the photos I see of you all, I can tell we're at least making an effort.

Lita

Sattipearl

I too thought a Stage IV dx meant dead soon before I was diagnosed. And my first 10 weeks were pretty horrendous. I lost 60 lbs fast &all my hair in the 2nd month, from chemo.

So, I do look good! And people want to say something helpful so I typically say thanks, or, isn't that great!?

I save my snarky retorts for the truly assholeish remarks.

My fav so far was a male acquaintance made a remark about all the money I was giving to my doctors for their kids' college tuition. My snarky retort was, Aren't you glad it's me, not you, taking one for the team?

He'll Heal from the burn.

Sattipearl

Lita57

SattiP: I love that...we're all "taking one for the team" especially those who are in clinical trials.

For example, I wonder how many of us Stage IV gals would still have been alive forty years ago? So many advances have happened in the last decades. My mom didn't have a chance in the 1970s when her cancer came back as St IV (the 40th anniversary of her passing is 10/10). But we have hope, and we have style, and we ain't gonna give up! We're gonna LIVE until it's time to go home.

Lita

Shutterbug73

Add me to the list of people who thought Stage IV meant deathbed. I remember the moment I realized that when they said "chronic", they actually meant "terminal...eventually". I remember looking in the mirror thinking "how can that be?" I looked the same as I always had (well, until the 2nd round of Taxotere), I felt good except for the horrible backache and limp. I just didn't feel *that* bad. Certainly not like I was dying.

I had no idea there were so many people living their lives this way. And there will be more of us as medical science allows us to live longer. I'm thankful to live in 2016 with the advances we've made so far, and with more to come!

Sattipearl - you look lovely and happy. I think happy throws people off too. I know once the shock of my diagnosis wore off and I started smiling and laughing and joking again, I got some strange looks from those who knew.

Lita57

Laughter is the best medicine. I find myself browsing thru my cable network, looking for funny shows to watch. You can't think about cancer when you're laughing at George Lopez or Chris Rock. And you can't think about cancer when you're singing along to Something for everyone, a comedy tonight! from "A Funny Thing Happened on the Way to the Forum" with Zero Mostel.

Lita

Sattipearl

in case anyone is interested, I hosted a living memorial for myself in February and it was THE BEST DAY OF MY LIFE,

It was sweet, funny, touching, sad, embarrassing, and loving.

If you'd like to see the video, it's on YouTube, Patti Searle Living Memorial. It's just shy of 2 hours. I did it because, as I said on my invitation, I didn't want them standing around talking about me after I was gone, I wanted to hear what they had to say while I was still upright.

Did I mention it was the best day of my life? 250 of my closest friends, co-workers, family AND my MO were there.

And yes, happy does throw people off.

Can I just say, too, that I love how my hair came back in...the color. I'm 64 and was rapidly going grey before the dx

akshelley

Sattipearl--A living memorial is so intriguing to me. I want a celebration of life, but I thought it was for my family, not me. I am celebrating life daily, making memories with friends. But what did your event consist of? I think I'd use it as a time to say "thank you" to all my supporters, as this has been a long journey. M

Lita57

I agree with Shelley. I'm wondering if and when I should do something like that. I'm still (I HOPE) at the beginning of this path. I hope I at least have another year or two before I have to consider my "bon voyage" party.

Lita

Shutterbug73

oh my goodness Patti, I only had time to watch the first few minutes because I'm running off to work, but you are hilarious! It is clear how much love you have for your friends and how much they love you back. And I must say, you really know how to work a room! I hope you get to bask in their love for many many years to come

Nel138281

Hear that all the time.   Well I say - my insides look like swiss cheese.

Max_otto

All of f you have made my day, I'm smiling, it's been a good day, my energy has returned and I'm been very busy, especially in the garden, I transplanted 18 king lilies and reworked one of the perennial gardens.

Satti, I'll have to look at your video.

exbrnxgrl

Wow! That's a lot of garden work, but aren't glad you got to do it? Though I love "big" things like travel, it's being able to function as normally as I can that makes me happiest. No every day is great, as is normal, but it's life

mara51506

Nel, I love the swiss cheese comment. My brain MRI actually has a hole in it where the bulk of my brain met was removed from the dura of my brain. Made me laugh out loud when most of this process has sucked.

I hope I can function for as long a time as my brain will allow. I am trying not to read too much about survival rates for brain mets, they suck but sometimes I can't help myself. I am trying to learn to live more in the moment since I am not a stat. Still new at the Stage IV thing. I saw a story about a woman who has been Stage IV for 25 years. While a don't expect to go that long, I do hope I get a couple of good years in before my eventual decline. Fingers crossed. All things considered, after a craniotomy and whole brain radiation, I do feel pretty decent, though tired.

You all inspire me.

Moderators

Moderators wrote:

Hi Everyone,

Metastatic Breast Cancer Awareness Day is Thursday, October 13th and for this we would like to share inspirational, hopeful messages on our Facebook page and in our community.

To help us with this, would you mind completely this sentence, and provide your screen name, age, and where you are in the world?!

"I am living with metastatic breast cancer and I still . . . " (e.g. play with my kids, love gardening, plan on...., expect to..., etc.)

(Screen name, age, where you live)

Please PM us with questions and/or your thoughts.Thank you!

The MOds

Sattipearl

More about my living memorial: everyone was asked to write something to me about our life together. It could be cheesy, roasty, fun, moving...whatever they wanted to say, and to bring it to the event.

I asked 6 people in advance to speak and when folks came, they could either get a lottery ticket saying they were willing to speak, or leave their writing and it would be put in a book for me. About 15 people ended up speaking, or playing music.

I also arranged a heavy horsdeurves snack after the event.

The whole thing was 3 hours with 2 hours for the sharing, and 1 hour for the eating, and we had it at my church. I had been on the Board so was not charged a fee for the space. We also live-streamed it for the folks who couldn't attend, and Skyped in one of my friends who was in Budapest on her honeymoon.

As Shutterbug said, I do know how to work a room. It's completely my element. I had a blast just letting people be.

My MO arrived about halfway through (he was on call for the weekend, and his wife had just that week delivered their 2nd baby so it occurred as miraculous that he was able to attend) and I made him come to the stage to intro him to everyone and for him to see the impact of his care of me on my community. Most docs meet 2-10 of their patients' closest relationships, so they have no idea of the wider influence they have on people's lives. He was blown away.

I recommend that you watch the video. Especially if you are considering doing this. If you want several good laughs, watch the video. I've watched it 5 times so far.

Much love to you all, no Matter what's happening.

Patti

exbrnxgrl

Hi friends,

Please go to this link to contribute quotes about living with MBC, in honor of MBC awareness day, on 10/13

https://community.breastcancer.org/forum/8/topics/...

exbrnxgrl

Miles is getting ready for his first Halloween !

Kandy

So cute

Bliss58

What a cute lil' punkin, Caryn.

exbrnxgrl

Thank you both. I am told that he was wearing a diaper and was whisked off to the bath immediately after the photos were taken.