Life does not end with a stage IV diagnosis (really!)
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I agree!! Life doesn't end, although when you first hear those words it may seem as though it might, the first 2 weeks was the worst for us til we knew exactly what was going on. I think DH was having a harder time than I was, he has always said that he will pass first & now his plan is in jeopardy!
He is finally able to make some jokes about it, yesterday at my infusion I was getting all my appts & they said they only showed appts for the next 6 months & he joked that maybe they knew something we didn't.DH & I have vowed to have more fun every day & we don't take each other for granted as perhaps we might have in the past. My stage IV diagnosis has certainly brought us closer together. I now try to live my life to the fullest, which I haven't always done.
We still do renovations to the house even though one of my friends said to me "should you be doing this? Aren't you sick?" I set her straight very quickly & she didn't mean anything mean by it, she was concerned that I shouldn't be doing anything strenuous.
I have dumped friends who aren't worth having & revisited some that for stupid reasons, we parted ways. I think the diagnosis has made me a better person. Not that I am happy to have stage IV cancer, but I guess for me there is a couple of upsides to it.
Like others here, I am very sad when I read about another woman losing her life to this disease or having a terrible time with it. I'm sure I will be there someday, but for now I will try to enjoy the life I have. Dee
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Judie, remember "It's better in the Bahamas." Enjoy!
Tina
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Terri-C, Welcome aboard (since we're all cruising with Juddi in our hearts). This is the greatest place to find information, support, cheering on, you name it! It sounds like you have a really good attitude and approach to life. I think this will help in the ongoing task of staying positive. It's about knowing the reality and living and loving your life anyway...maybe even better.
Take THAT, cancer.
Virginia
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Like any normal teacher in my school district, I am consumed by preparing for the first day of school, this coming Tuesday. Stage IV bc plays no role in these crazy busy day. Books, pencils, iPads, crayons, Common Core Standards, google forms and docs fill my brain. How do I feel about this? I LOVE IT!
Have a good weekend, Caryn
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Costco and the normal life
Planning the big trips, travel to new places and other forms of exotica are things I love and keep me going while living the stage IV life. But time after time, it's the mundane that I cherish the most, the everyday stuff that becomes the most important. I'd bought my granddaughter a pair of Hello Kitty rain boots at Costco and my older dd, her mom, thought she needed a bigger size. My younger dd was visiting at the time and there was a bit of tension between them that was just starting to dissipate. So, despite the fact that we knew the store would be packed and that we were only going to return and repurchase one item, we all hopped in the car and went. I agreed to wait in the return line while they wandered the store and would eventually meet up at the boot display. I got through returns very quickly and went to look for them. They weren't by the boots or toys. I wandered further back in the store and found them laughing and running from sample station to sample station, tasting, sharing and critiquing food samples. We checked out Costco's ever increasing selection of organic produce (good but you still have to buy large quantities), gluten free snacks etc. before finally picking up the new boots. We ended the outing with churros and frozen yogurt. My older kept saying what a fun adventure it had been and that she'd love to go with us more often (only younger dd and I are members). All I could do was smile. This is what I really want out of life, regardless of how long or short it may be.
Caryn
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exbrnxgrl, those positive, spontaneous experiences of fun that happen out of nowhere are the best!
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exbrnxgrl absolutely, the mundane and every day things, I hold those close as we;;
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Life continues to begin again with a stage IV diagnosis...my oldest DD just had her fourth child two days ago, a son. Since my dx she has had two beautiful children, a precious little girl, Lucy who at the ripe old age of 16 months is no longer the baby of the family. Her oldest, Joe age 5 and I, just had an adventure across the country to the San Juan Islands in WA where we celebrated my mother's 80 birthday with a clambake and bonfire on the beach at my sister's home. Lastly, Ellie is 3 and it's her photo you see as my avatar when she was obviously much younger. So I am very blessed to continue to witness new beginnings and don't want to stop, even for a moment to think about endings.
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AmyQ Congratulations on your Grandson. That must be such blessing to see the grandkids be born and grow up. My daughters (15,17,20 &22) are not married yet and although I don't want them to rush anything I can't help but selfishly hope that I get to see grandkids one day soon too I'm so afraid that I won't be here to see them get married, have kids and reach all those precious milestones. However, I'm here now and I cherish every moment with my DH and my beautiful girls. We had a great summer with lots of traveling along the East coast. I spent two wonderful days in NYC, went to a wedding, went boating in NJ and spent precious time with family and friends. Life is good, even with IV.....Love to all, Karin
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Well said, Caryn,
My journey is just beginning. Diagnosed as stage IV in Dec 2009, July PET scan showed NED. I "only" have bone mets so far. On Arimidex and Xgeva. Joint and bone pain is a problem, I walk like an old lady for the 1st 10 or so steps every time I get up, no matter how short a time I've been sitting, but the pain does subside. I cannot take any pain meds whether prescription or OTC, they all bother my stomach. I am taking krill oil and ginger root as anti-inflammatories. And I love my heating pad! I saw a couple of people mention another supplement that begins with a "C", I'll have to look around the bone mets thread for it. I've been on this thread and a couple of others a few times. I know this will more than likely be the end of me (unless something else gets me first), but I can't dwell on it and let the life I have now pass me by. I don't know if I'll ever be able to hold my first grandchild, which hangs around in the back of my brain and sneaks up when I'm not paying much attention, but I believe I will be able to see my one and only child get married. He is asking one of the sweetest people on the planet to spend the rest of her life with him on their 3rd anniversary, Monday, September 8. She graduates in December from her masters program and then starts her residency as a music therapist. Her practicum last term was on music therapy for the caregiver, something that she intends to perfect for my son and my DH. She's already told me that she and my son will be there at a moments notice whenever I need them, no matter what part of the journey I'm on. I am truly blessed. Please know that all of you are in my prayers and your triumphs and tribulations are mine too. Enjoy life, it's the only one we get.
Sharon
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Well said sharon hugs
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This has much more to do with life, than bc, but touches on both.
My car turned in to Christine last night (re: Stephen King novel and movie). After a very long school week, I was just relaxing around the house. I kept hearing a car alarm going off at odd intervals. It was getting on my nerves and I hoped it would stop soon. I thought it was coming from the street in front of my house (I live in an urban area). After a while I went out to my patio and peeked over the fence to see if it was any of the cars in the parking lot. Then, I thought it sounded suspiciously close... I opened the door to my garage and there was my very own car loudly sounding it's alarm, flashing it's lights but not with any regularity. Tried everything I could do to stop it. Called AAA, they came out and the car stopped doing it as soon as they arrived! The serviceman looked at me as if I was nuts. He left and dd and SIL came over. No sooner did they get here then the car started doing it again. Called AAA again and they sent a different person. I was too tired and frustrated, so SIL handled it (very grateful!). The bottom line was that the only way they could get it to stop was to disconnect the battery. SIL is coming over shortly to reconnect it in the hope that this resets the alarm system. BTW, it's fine if the engine is on. Ah, life...
PS: I'm pretty sure my neighbors were none too happy either.
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exbrnxgrl--this is one of those great stories that makes life so interesting.
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yes, alexgram, it will make a good story. SIL just left. Battery connected, car starts, and so far, the alarm is silent. I really want to go to the car wash, but am afraid to do anything with this car. Will wait about an hour and see how it goes.
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exbrnxgrl--it won't start honking until you've put all your money into the car wash, then watch out!
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LOL! You're right, but my car looks awful after that little spritz of rain we got here in San Jose on Thursday and my sweet granddaughter has filled the back seat with crumbs. I can barely stand to drive it and I'm afraid my students' families are talking about the teacher's filthy car when they see it in the school parking lot
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This happened to my son's car several years ago. I forget how it was resolved, but very wierd in the interim. Pray to the car god for all quiet today!!
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Bumping this because I've noticed we have a few new members who are wondering about how life may be for them. Again, I acknowledge the struggles of those whose lives are far from normal, but stage IV comes in many different "favors". I know this will not satisfy the haters, but I have no control over that. Enjoy your life in whatever way you can. Don't give it up to bc one single minute before you have to.
Caryn
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Thanks Caryn. I did need this.
I'm going to ask my doc about Effexor. I have some Ativan, but I worry about relying on it too much and I don't like the way it makes me feel all fuzzy headed.
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Hi all I'm new to this side of the site. I haven't been on since about 2010. Back then if it wasn't for this site I don't think I would have made it without losing my mind. I am so thankful.
I was dx June 2014 with mets to bone and brain. Since then I feel like a hampster spinning on a wheel.
Since my original dx 2009 family life has changed. I was married with 4 kids at home. Now I'm separated with 3 kids still at home. My oldest DS is married with 2 DDs of his own.
Ihaven't worked since my original dx chemo because, honestly chemo destroyed me.
I feel absolutely hopeless right now. Oncologist prognosis is 3 years.
I just feel lost.
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Deborah,
Welcome back, though I'm sorry that you have to join us. Yes,a stage IV diagnosis is quite a kick in the gut. One thing I wouldn't focus on is your mo's prognosis for survival. No one has that kind of crystal ball. Have you had a second opinion? Most of us would suggest that, especially with an mo who is willing to give you an expiration date, if you will.
Personal changes in your life have to be worked through too. I don't know if you are happy about your separation or not, but being a single parent is never easy. I was thrilled to kick my ex out, even though it left me with total responsibility for a minor child (older dd was out of the house) and selling the family home and cleaning up the mess, physical and financial, he left behind. It was tough after 23 years of marriage, but beside being glad at the time, I'm doubly glad that I was dx'ed after our divorce. He would have been utterly useless.
Please try to find help and support through family, friends and extended community. One thing I know for sure, is that all burdens are lessened with the help of others. Also, embrace and cherish any bit of normalcy you find during these stressful. Counseling and meds can be helpful as well as any support groups you can find. Of course, you can always find many shoulders to lean on here at BCO.
Caryn
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Hi Deborah. I remember you from the good old days. I'm so sorry about your situation, but just felt I had to chime in about prognoses that some oncs have a habit of handing out. I was diagnosed with bone mets in 2006, lots of them. I remember the onc telling me the average life expectancy was 2 years at that time. In 2009 it had spread to lung and brain. Told to get my affairs in order. Still alive and kicking. So take that 3 year thing and put it out of your head. I would go so far as to say that those who only make it 3 years are in the minority. I know it sucks, but just keep putting one foot in front of the other. Not easy, and I don't want to be preachy, but if I can do it, anyone can. I'm a wimp. It's so nice to see you again. I've thought of you from time to time. Welcome back.
Forgot to add, the liver mets too, at which time, onc said "once it's in your liver, blah, blah". Currently, they're almost too small to be seen. So pooh on that.
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cherneski, ugh to any oncologist who wants to time stamp us!!! I don't like that for so many reasons -- not just because we're all too different to predict a uniform outcome, but because it then can become almost a self-fulfilling prophecy. Unless we're totally out of treatment options -- and even then it can be hard to predict how long someone may do well -- we all need oncs who give us hope and encouragement and talk targeted therapies; not (IMO) someone who has already formed an opinion about how well you will or won't do. There are too many long term survivors these days (including many here on BCO), and enough important advances on the horizon, to ever accept that kind of thinking. JMHO... (((Hugs))), and glad you've come back here! Deanna
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This is going back a few posts but I wonder if there are really haters or just people who are frustrated? I can see that because this isn't a walk in the park for everyone but it is good, I believe, that some people want to provide hope (like yourself, Caryn).
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musiclover,
Yes, frustration and a bit of bitterness, perhaps not true hate. Sadly, I have gotten a few hateful pm's. I get over them but it is hard to believe people can purposely be so mean. Bitterness and anger are not a part of my repetoire (though they have surfaced now and then) and I would never intentionally aim to hurt. Hope is certainly not a bad thing!
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Cher i am so sorry, hopeless bout that, u are not going aywhere, dont listen to him we never talk about that, he is wrong, we r here Hugs
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I am happy I found this thread (don't know why I didn't see it before). Today was filled with pain and sadness. Pain really gets me down. But going through these posts really perked me up. Thank you all for sharing your experiences. I have a good QOL and a lot to be grateful for -sometimes I tend to forget that. Stage 4 changed my life so much. I used to be so active physically, slowing down was and still is hard for me. I lost my husband to brain cancer almost 6 years ago on 25 November - I hate the month of November. I met my boyfriend in August 2012, was dx in November 2013 - told him he didn't have to stay with me as this was gonna be quite a journey. We're still together and happy. Amazing how he adapts to my situation. I'm also learning to accept help. I'm seeing my onc next Monday - if everything is stable, we're planning on going to Mexico for 1 month in January! I never thought I would be planning this when I was dx. Winter can get be pretty hard in this neck of the woods (Montreal, Quebec) so I'm looking forward to this trip. I find a lot of strength on these threads.
Linda
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Welcomed cancer sure wakes u up
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I figure I can walk on one of 2 paths, that of hope or that of despair (saw this in a post years ago, can't remember who). I'm grateful for anyone who inspires me and reminds me to stay on that path of hope and Caryn, you are one of those people, thank you!
As I've learned here, focusing on living in the present is really good advice. I'm not the best at it, but I think I'm getting better. I know when I'm in pain it's a lot harder - Linda, here's hoping that tomorrow is a better day for you.
Deborah, I wish I could wrap up some hope in a pretty package and send it to you. I did Taxotere and Cytoxan too and it totally wiped me out as well. Hang in there - we are all here for you and will be pulling for you.
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Thank you all for the kind words, support, and hope.
I've not gone for a second opinion but I will. I'm probably gonna fire my onc. for several reasons.
When first dx I had a much better attitude than now. I don't have much support, I don't know how to ask for help. I try to keep things normal and up beat for my 11y/o girl & 10 y/o boy.
My ex n I arebetter off apart. My biggest concern is money. Idk how I'm gonna survive this again. I want to be enjoyingg my time and im so stressed out about keeping my electric on I'm ready to snap.
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