Life does not end with a stage IV diagnosis (really!)
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Semantics, yes, I love the word and it's meaning. I was a linguistics major for my undergrad (ESL was a sub- discipline of linguistics at my university ). I understand that language is a living, changing thing, although I don't always like it. Why does atypical sound so much more benign than abnormal?
Caryn
PS: justjudie,
The Harbour Bridge climb is definitely one of the most memorable experiences I've had. And, on another her note, when someone spells my name, Karen, I think it's someone else. I know it's pronounced the same way but in print, Karen is someone else.
Caryn
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Thanks justjudie!
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Caryn, maybe I told you this story before: My stepson's wife is named Caryn. I also work with a woman named Caryn. They were both pregnant at the same time. It was my husband's (and my) first grandchild. I got a baby shower invitation in the mail from Caryn the woman I worked with. Her maiden name was on the envelope so I knew it was her, but it just said, "Shower for Caryn! It's a boy!" My husband only saw the card and started asking me all these questions. It's a boy? he asked. Yes, they're calling him Hank, I said. He was acting weird until it dawned on me that he thought the invitation was for his daughter-in-law's shower. He thought he was the last to find out the baby was a boy and he wasn't sure he liked the name Hank for a grandson! So I said, "This invitation is for Caryn who I work with!" Guess what. He still didn't believe me! lol. He said, "She spells her name that way, too?" "Yes, honey!" It actually took him awhile believe I knew what I was talking about. And as it turns out, we were blessed with a beautiful granddaughter named Josie.
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Mrs. M,
No, you never told me that. What a good story! You've known more people who spell Karen, Caryn, than I have. Did you know that Whoopi Goldberg's real first name is Caryn? I used to hate it when I was younger because couldn't get personalized items, like a mini license plate for my bike, but I love it now.
On another note, I have something personal to ask you. This also reveals a bit of the darker side of my personality. You mention that Josie is the daughter of your stepson, but you consider her your grandchild. I have a granddaughter (two years old this week!) whom I adore. They live about five minutes from me and I see her several times a week. We are very much a part of each other's lives. My ex lives on the east coast. He has been living with a woman for a number of years. When my dd found out she was pregnant, this woman was very excited about a grandchild. I was furious, really, really, furious that she would even think that this was her grandchild. Some history; my dd's were adults when my ex and I divorced. This woman had nothing to do with the divorce. As I said, they don't live near us and have only seen my granddaughter a few times. Despite this, the idea that this woman might in any way consider my baby to be her grand child, fills me with rage. I don't know her and it's nothing personal but this is not her grandchild! I also fully acknowledge that since I loathe my ex, I am taking some of this out on her. But, I simply cannot allow her to think that she is a grandmother to my granddaughter. I have even made my dd's promise that when I pass, this woman will not become grandma to my granddaughter or any other grandchildren. Sometimes I feel that my attitude is irrational ((children can be loved by many) but usually I feel like, she just can't casually enter my family's lives and become an important person. More history, neither of my dd's particularly like her or their father for that matter. So, my question is how have you come to, what seems to be a peaceful place?
Caryn
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I think my use of the word typical comes from having worked with folks with disabilities for more years/decades than I care to count. People without disabilities are normal and those with disabilities are abnormal. NOT!!! The message this conveys is just horrible for the parents, children and adults. What is normal anyway. My life is pretty typical, but cuz of the cancer dx, not really "normal". So yes semantics but I always got annoyed when folks would say my ex was "babysitting" the kids if I went out. NO I don't babysit the kids and neither does he. We are both fulfilling our roles as parents!! Used to make me CRAZY!! I do get a bit caught up in the semantics, but so much can be converyed with a simple word.
And yes DivineMrsM - yes the dx has taken away my sense of well being, and that is a loss that can not be described.
Be well
Nel
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Nel,
My ex always said he was babysitting or girls. It drove me crazy! How can you babysit your own children? One change that I love is the use of regrouping as opposed to borrowing in math.I was very literal as a child and didn't think it made sense to say borrow, when nothing was ever returned. We have a special day program at my school and many students with various differences are included in the general classroom. I attend many student study team and IEP meetings. I would never support using language that offends but sometimes we are so careful in our word choice that the message is just too indirect or obscure to even know what we're talking about.
Caryn
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I work as an instructional aide alongside multi-handicapped children and often use the 'special-needs' term when speaking about them; to me, the term conveys caring and insight. Sometimes among the school employees we use the term 'MH kids' which I don't find derogatory at all altho I wouldn't refer to them that way to their parents. It's just a school shorthand used among colleagues.
Caryn, re: your question about being a grandma to my stepson's two kids. First, you and I have different situations. My DH was married and divorced before he was 20 years old. He had visitation rights with his son. His ex remarried (twice). They all still lived in this tiny river town. DH and I met eight years after his divorce, and we had been married over 20 years before we became grandparents. So I knew my grandson since he was about 11 years old. DH's ex used to give him all kinds of grief over the visitation for no reason at all other than she was a controlling drama queen. Once step-son (SS) graduated high school, he furthered his education and got a job in Columbus, Ohio (2 1/2 hours away). There he met a terrific girl and married her. She's a wonderful people person and we always got along.
At some point and for some reason SS had a big falling out with his mother. We still are not sure what happened as we don't like to pry. But I gather she said derogatory things about his wife who is someone everyone gets along with, so go figure. The baby shower for the 1st grandchild was half an hour away and I offered to take SS's mother, but she said it was too far. When the baby was going to be born cesarean, DH, DS and I went to Columbus and offered to take SS's mother but she declined (even tho even her husband and/or other son could have driven her as well). She has never seen her granddaughter or grandson. In this area, so much emphasis is placed on family that we are simply stymied by her choices. I sometimes wonder if she simply wasn't able to make that transition to having a relationship with her adult child when she could no longer call the shots in his life. One other thing: SS's mom was adopted at birth, never chose to find her birth parents, her adoptive parents have passed, so these grandkids are some of the only blood relatives she knows. I can't believe she chooses to miss out on these two beautiful bundles of joy.
Another difference between you and I is that these are your daughters babies; you're their mother. Maybe it's different with a son and his dad.
Also, since I work with kids, connecting with SS's kids is an easy extension of who I am. Because of that, I'm certain I bring different energy to the mix, my house has different activities and toys than my DIL's mother's house.
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I wish I could get to the point where I could let it go. I really loathe my ex. He did so many awful things to me and blew apart his children's secure life for his own selfish desires and lied about everything. I feel like he doesn't deserve the honor and pleasure of being a grandparent, and his girlfriend sure as heck doesn't. He has no contact with my younger dd and has made no real effort to try to mend the relationship with her. I am so hurt that she has such a selfish, cowardly father. I can't understand how a parent can have no contact with a child or grandchild. It is simply heartbreaking.
Wow, I've really steered this topic off the track. On a happier note, my granddaughter will be two this week. She is having a party in a local park that has a carousel and miniature train. I can't wait!
Caryn
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Caryn, I say allow yourself to feel the loathing and don't apologize for it. I'd even go so far as to say embrace it. Just like I wrote earlier in the thread: as women, too often we get these societal messages to 'forgive' 'play nice' 'get along' 'be good little girls' and that dreaded 'keep sweet'. Well, we can have very strong and not-so-nice feelings and we shouldn't have to bottle them up or pretend they don't exist just because we're women. Why say, "that's okay" or "it doesn't matter" when it obviously does matter and when someone is a complete you-know-what. Also, I understand completely that it matters more to you that the ex is hurting your daughter than anything he ever did to you. I tend to hold a grudge against those who treat my son wrong much more than if they try to do me wrong.
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Well, now that we've established that my ex is my Achilles heel as a trigger for all my uglier emotions, it's time to move on to my "normal" stage IV life. I'm leaving for another cruise in about 10 days. Here's my to do list:
Lesson plans for last week of school before break
Correct papers
Have port flushed
Make pedi appointment
Get hair cut/colored
Refill scripts and make sure all meds are ready
Get suitcase down
Call nuclear medicine department to reschedule PET scan
Pack
Enjoy cruise 90% of the time, worry about upcoming PET 10% of the time
Indeed, life has not ended, but it sure has changed. Not complaining and enjoying every minute I can, but it strikes me as very strange sometimes.
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Caryn, Have a wonderful cruise! And good luck with your PET. I think it is good you are going on the cruise first. That is the way I would do it.
Just remember, you are the one blessed with the great relationship with your dd and gd.
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Danishgirl,
Mange takk! Despite the "normal" life I do have lots of scanxiety. I think that at stage IV, regardless of how well one is doing, we know that that next scan get turn everything upside down. I try not to dwell on it but when I get so close to the scan date, 2 weeks from today, it begins to loom larger in my mind.
Caryn
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Caryn - yes to scanxiety. The "black Irish" in me keeps waiting for the other foot to fall. Enjoy the cruise and no thoughts of scans.
Thinking the last few days that life really does not end when you receive Stage 4 dx. One stills needs to deal with the every day, meals, laundry, grumpy and sometimes needy teens. Life continues to go on around us, we can continue to join in with the good , bad and sometimes ugly moments or watch it pass us by! I choose to participate. Some days I is planning for the next trip and somedays it is dealing with your teens most recent crisis. But really life does not end
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Caryn, If you get a chance, send pics of the wonderful scenery and food. Maybe we can live vicariously!
I worry about scans too, but you are having such a good time, the worry will be fleeting. Hugs (I don't know how to say "hugs" in Norwegian), MaryAnne
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Thank you for this thread and I do hope that it will provide hope for future stage 4 fighters.I think it is normal to go in panic mode, ( or like me- in shock and denial).
After 5.5 years of being cancer free after initial diagnosis I was diagnosed in November 2012 as stage 4 with, mets to bones, liver, lungs, and brain,(tumour markers were about 500) and I felt completely overwhelmed. That was over eighteen months ago, and with treatment, the mets to the liver and brain are no longer visible and the mets to my lungs and bones are extensive but stable and my tumour markers are 31 which is normal. The side effects to the chemo are now doable and I lead quite a normal life enjoying every day to the limit.
Mandy
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Nel,
So true! My dd's are both grown but we still have the up,downs and conflicts of any normal family. Sometimes they drive me crazy and I want to scream. "I have stage IV cancer. I do not need this emotional craziness!" However, I realize that part of my normal life is living with the good and the bad. Cancer, even stage IV, does not give you a free pass from the less pleasant aspects of family and relationships. Now that I think about it, if it did that really wouldn't be normal, would it?
Caryn
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Caryn........enjoy your trip! Forget the scan. Don't let thoughts/worries rob you of even one second of enjoyment. I can't wait to hear all about it!
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Exactly Caryn! I try to treasure all the moments - the good, the bad and especially the ugly!
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mandymoo that's fantastic!
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hi Mandymoo,
Thank you for your post. It's important for us to "hear" all stories on the stage IV spectrum. This disease, even with mets, is amazingly complex and experiences are often highly individualized. I want to acknowledge that everyday on this forum, we have sisters who are going through major difficulties and even facing their last days. I honor them and don't intend to diminish their experience. But I also want everyone reading this thread to understand that, for some, relative normalcy is possible. It may not last forever so I hope we can find a way to enjoy it as best as we can. I hope you have a good long run of normalcy !
Caryn
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debsing,
I know that you're going through a tough time right now. Thank you for being so gracious.
Caryn
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I am enjoying this thread and even chuckled a little when you Caryn said you are packing for a cruise. My husband and I both have the same milestone birthday next year, about 7 weeks apart. He said I could plan a trip anywhere I wish so I've been researching and combing the internet, but after several weeks I decided on Ireland (they're my people) and Scotland and Wales, for 2 weeks. When I was mentioning these plans to someone I know, they were rather shocked that I would plan my life 16 months out...apparently given my Stage IV-on-deaths-doorstep...NOT
So my point is just as you and others have said, life does NOT have to stop with Stage IV and I plan on other trips and other memories for as long as God allows.
Amy
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Amy,
I found out about my bc about a month before younger dd's engagement party. Her wedding was to take place two years after that. I felt very sure I would be around for that, but was also invited to join a cruise (AUS /NZ) 6 months after the wedding. I hesitated for about a minute and then made sure I purchased travel insurance that covered pre-existing conditions. I had the time of my life. Tomorrow's cruise just fell into our laps less than 3 months ago. Great price, no airfare since it's out of San Francisco and coincided with my school's spring break. There was no way I could refuse! It will also help me to not focus on the PET scan that's scheduled for two weeks from today. Have fun planning your trip!
Caryn
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Caryn,
I just wanted to pop in here and thank you for this thread, not only on behalf of my daughter, who was diagnosed out of the blue with Stage IV IBC over a year ago at age 32. The hopeful stories here about ladies living with this diagnosis are needed, not only for the newly diagnosed, but their families as well. The stats on Dr. Google were shocking and scary as hell. BCO was such a lifeline both for her and me, she reads here occasionally, but I did most of the research on what we were dealing with. She's doing fairly well now, after chemo & BMX, now trying hormonals to see if that will keep things 'quiet' for a while.
I also wanted to tell you to enjoy your cruise! As you can tell by my 'handle' I love cruising and try and go as often as I can, so we hop on the quick weekend ones a couple of times a year. You mentioned you were going on a winery tour in Mexico. I hope it is one of the ones on buses to the interior that visit a couple of operating wineries. I done that one and it was wonderful. Other tour groups offer a tour that only goes downtown to a closed historic winery, not nearly the same and not nearly as fun.
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I am glad you opened this thread Caryn. I think you have made some great points and I have also read some counterpoints in the responses to you. I think that is the whole idea. I for one was very surprised that I did not die in a few months. That is what I expected when I got the dx. Instead I march on! While there are a lot of different experiences out there, the great thing is hearing all of them! There are no guarantees for gals like us but there are also no guarantees for anyone! So we march on! Thank you to all of you for all of your unique opinions and your individual experiences. I am 2 years and 3 months into this thing and need to understand the range of possibilities. Thank you for that!
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This has been a tough week on the stage IV forum. We have lost two members and others have reported new struggles. I learned of chickadee's passing the day I got back from a lovely cruise. My emotions were all over the place. It made me think, once again, about what normal means at stage IV. Sadly, for me, it means coming back from a great vacation and mourning the loss of a friend all in the same day. This is a normal I wish was not part of my reality but the fact is, that it is. So, I deeply feel the loss of a friend as surely as I feel the enjoyment of a good time. Although I would never volunteer for the stage IV club, I also know how very rich my life has become by knowing the women on this forum. All the joy, all the sadness, each inescapable facets of life. Perhaps, bc has taught me how to live graciously with both.
Caryn
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What beautiful words Caryn. Thank you for sharing your thoughts and helping to reassure and comfort all of us.
I do hope you enjoyed your cruise. Perhaps you could share a peaceful photo or two.
Amy
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Caryn,
yes " learning to live graciously with both".
Nel
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I'm sorry, who passed this week? I read Chickadee, may she rest in peace. Who's the other sister?
Also, I posted a new thread yesterday about pericardial effusion. I hope some of you can help. Caryn already has.
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debsing and MartyMart and Chickadee all died this week. All three of these women have threads memorial threads. *susan*
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