Life does not end with a stage IV diagnosis (really!)
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I try to live as best as I can with stage 4. It's so much more complicated when u have kids involved my 8 year old just simply don't get it. My 17 year old is in denial. My husband and my sister are supportive my parents only know what they need to know. I don't want them to have heart attacks from knowing what I go through. I have two say I really had hard times but I will not deny the great times. I am not always sick I have a normal life where I work over 40 hours a week I take care of my home with help from my hubby. We travel as a family more so know than ever. I only pop pain meds on a need basis. Right know I am going through a biopsy were an area in my head was in a rash from a/a treatment and I kept on scratching until it would bleed and it got badly infected where they had to cut the top piece of my head and clean it and biopsy it just because I am stage 4 if it was a regular joe no biopsy. But it's ok my doctor is just being careful. But by being careful it takes a huge toll on me. I am in such pain from this it's not funny. I have this huge whole in my head which I hope will close soon. But u know what I am alive and still happy and when u all come tell great stories I feel even better. Hugs to all my sister and I am not in denial I still have hope. Because hope is the only thing I have at this point to hold on to and if that is what is making me wake up everyday and go about it than that's what it's going to be.
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Stella,
Yes, our lives, even if we're doing well, still contain elements and challenges that didn't exist before bc. Perhaps many of us should more accurately talk about a new normal or as normal as can be. As for life not ending with stage IV, I don't think that should be interpreted to mean your life will never end (everyone's does) but just that it probably won't end immediately and you may do far better than you originally thought. I know that for me, it's still surprising despite what I've been through and what I still deal with.
Caryn
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I am just at the end of reading the Emperor of all Maladies, a history of cancer. Parts of it were difficult to read because it was about cell biology so I just skipped it. One of the last chapters is about a woman who was dying of BC when a researcher called her to see if she would be willing to take what eventually would be called Herceptin. Of course the rest is history, as they say. She is still alive and doing well. We can only hope.
On another thread called Best places I've been too… I reminisced about just that. I'm going to get out my pictures that are not well organized. I think I will see just how blessed my life is.
I also want to clean up my patio potted plants. I wish I had planted tomatoes, but I think it is a little late for Florida.
I think I may die of BC, but not for a while.
Caryn, Good luck with Norwegian. I don't think my chemo brain could deal with that.
stellaratov, I'm so sorry for all the pain you are suffering. Try to organize pictures for your children if you can.
Keep the stories coming, good and painful. Hugs to my stage iv sisters. MaryAnne
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Danishgirl,
Yes, I think I will probably die from bc too, just not today, because I have massive amounts of laundry to do
Are you Danish as in the pastry or as in nationality/ heritage? I'm told by a bco member who is from Denmark, that Norwegian is understandable to Danes. I know Swedish speakers can understand it. Ha det!Caryn
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Yesterday I had a pre-surgical physical from my PCP prior to an unrelated-to-cancer hip replacement. I've been seeing this wonderful doctor annually for many years and love her good-hearted, old-school, down-to-earth approach to things. She takes care of my garden-variety medical stuff, and my oncologist and pulmonologist attend to the rest.
We are nearly the same age and treat each other as peers. We have a chatty good time together at appointments.
She does not fuss about my steady weight gain and I don't give her a hard time about her stubborn rejection of computerization. (We both know how to pick our battles.)
Yesterday she confessed that she usually forgets that I have Stage IV BC until she looks at my chart. I laughed and said, "Well, I sure don't." She said that she doesn't think of it because " Your attitude is so great and you're doing so well." I responded, "I'm sure my attitude is great because I'm doing so well."
Tina
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Two walks with the pup today, shopping with my bff and now getting ready to go out to dinner. I pace my self differently than I used to, but chilled yesterday and will probably do a fair amount of that tomorrow as well.
Good evening to all
Nel
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Hey, I want to say that the fact that exbrnxgrl started this thread isn't the reason I agree with the original train of thought here. There are times when I don't necessarily agree with her, and that's okay. Just an example: if I remember correctly, she's Jewish; I'm Christian and tho I may not see eye to eye with her on the 'religious' front, I certainly respect her opinion. I'm not one to jump on anyone's bandwagon simply because of who they are. I'm not like that in real life, and I'm not like that here.
I also want to say that I don't really agree with trying to avoid the controversy by saying 'oh, just let it go, just scroll on by.' We women are so often chided into being 'nice girls', not to make waves, or even the 'keep sweet' mentality that the Warren Jeffs female followers are taught. There is room for disagreement among us women here. We all deserve a great deal of compassion, no matter what our views.
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MrsM.,
Thank you. I am definitely not comfortable with the idea, or the insinuation of such, that people should agree with me because that's the only acceptable answer or because I'm a teacher. Though I teach first grade, I'm a huge proponent of critical thinking, even for my little ones.
Yes, I am Jewish, but pretty lapsed in terms of religious observance. I have a hard time with following rules, especially when it comes to my spiritual needs. Culturally, very Jewish, having been raised in NYC, in a Yiddish speaking household, but 25+ years in CA make me quite left coast as well.
As far as scrolling by threads one doesn't like, I think that if reading such threads upsets you, makes you mad/sad or causes you to lash out an another member, you should scroll by or block it. It's just not worth getting your blood pressure up over something like that. You should not, however, be afraid to express yourself in an appropriate adult manner. We are all big girls, after all.
Caryn
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Caryn, I'm actually half Danish, but loved my grandparents' Danish Sisterhood and Brotherhood. My son in law is Swedish and is trying to speak only Swedish to my grandson. I have picked up a few words. They go to Sweden every summer so I'm sure he will pick up the language fast when playing with cousins. I speak only English.
Tina, I'm on A/A combo and have lost about 20 lbs, I have read that some meds actually make you gain weight, so I'm not throwing out my big or skinny clothes. I hope you continue to feel well for a long time.
Stella, You are pretty amazing to do all you do while you are in pain and not feeling well. I hope your doctors get you to a better status soon.
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Just back from kayaking in the Royal National Park, just south of Sydney. Had an amazing thunderstorm late yesterday but it was all clear this morning as we paddled peacefully around the bay, beautiful! On our way back to the city at Midday another thunderstorm rolled in! Enjoy the weekend, as best as you can, everyone.
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Fitzy,
I was in Australia a few months ago. What a beautiful country. I was only in Sydney for a day, but I did the Harbour Bridge Climb which was amazing. I also fell in love with Hobart and thought the Taste of Tasmania festival was the best food and wine festival I'd ever been to. Wish I could go kayaking near Sydney right now.
Caryn
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I was reminded tonight that I am stage 4...I was asked by the non-profit, inheritance of hope, to give a little speech to a group of runners who are doing the biltmore house marathon tomorrow. I really do enjoy telling my story and how this non-profit has changed my life...but it is awkward after the fact when people come up to you and say "your story is so inspiring." I just tell them that I am doing what anyone else in my shoes would do. And I do strongly believe in paying it forward so that other families who may benefit from this non-profit can have that opportunity.
Sitting at the dinner table with some of the runners, they just say things like "that's going to kill me" or "I'm just going to die." I know I am just hyper sensitive to those words. They mean no harm. One guy said he was going to run the race in honor of me. I thought that was very sweet.
I am on disability and I'm not around large groups of people anymore so I find myself uncomfortable for some reason. I have never liked the spot light to be on me. A lot of my friends from high school have reached out to me to "help" or hangout. They take me to lunch and it's great to see them and catch up but it is exhausting! They talk non-stop about themselves. Maybe they are nervous? But I have decided to not waste my time with acquaintances, but save my energy for my close friends. Anyone else have that happen?
Just when I think I have adjusted to my new normal, something is thrown at me, reminding me that I am sick. Kind of like when you have kids...you think you have figured out their schedule of eating and sleeping and then they stop eating beans and start waking up every night at 2!
Sorry, I am just rambling.
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This site has given me perspectives I would have never of thought of on my own. I've received not only medical information and good tips for treatment but also hope and inspiration. Unfortunately, as life and death would have it, I've also left here in tears with a massive hole in my heart upon learning of others progression and/or passing.
I've been on here for a while now and I can only hope that some suggestion or post that I write helps another woman through her pain and fear just as many have done for me. We all have both of those things (pain and fear)...I hope that we all also have love and happiness, whether on our first day of dx or our last day on earth.
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Superfoob, you say it well, "this site gives perspective I would never have thought on my own".
Kjones, I work part time at an elementary school, so I'm around large groups sometimes, but I am happy when I get home and it's just me and DH. If we have big family gatherings, I enjoy them but appreciate when DH and I can get back to our daily routine. I try to only do what I love and like and not do things out of obligation. Last year, I sang an Easter cantata with a church choir and also did a Christmas one with them, too. It required weekly practice sessions for several months. I turned it down this year because it no longer sparked my interest, and these people are just acquaintances. I didn't want to keep doing it out of obligation. I was proud of myself for saying no and felt no guilt about it at all.
So it makes sense to me that you want to spend quality time with people you love, and not fill your days up with superficial connections.
You say you believe in paying it forward, but the fundraising and all that stuff is not something that I've been compelled to do. There's a younger gal at work who had bc a year before me, and she continues to do fundraising all year long for 'the cause'. She was very supportive of me when I was dealing with treatment, ect., but I've never revealed the stage iv diagnosis. Her efforts are commendable, but to her, she has 'beaten' cancer, and for me, it's just a little to perky.
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I too have learned much from the women on these boards. Different perspectives and different ways of thinking, support to receive and support to give.
Went out last evening with a group of friends, the dj was a guy who played happy hour on the Cape for many years. John Morgan, for those of you who may have hung on the Cape in your younger days. He still plays on Saturday nights, many memories, lots of singing and laughs. And might I just say it is easier to do the limbo with just one boob, you can angle in and get under the limbo stick much easier! A benefit!
be well
Nel
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Nel,
Too funny! That is a fabulous benefit. Just about to start a 5K walk in the city of Dublin (CA). Happy St. Patrick's Day!
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mrs m--I'm not into the whole pink thing. I really love inheritance of hope because they are one of few organizations who support families who have a parent with a terminal illness. Not just bc, not just cancer, any life-threatening illness. At whatever events I go to to speak, I'm just honest, don't know how perky I am. Another reason this non-profit has changed my life is because, the founder of the organization, Kristen Milligan, had a rare liver cancer. She was told 6 months many times. She lived 10 years. She left behind a husband and three kids. She wrote a book called "consider it pure joy." It was a very intimate detailing of her life, fears and joys. I am a religious person and this book showed an amazing amount of faith and grace. She answered the question that plagued me, haunted me really. Who is going to love my children more than me, especially when I am gone. The answer I found...God. I still have a tendency to kick and scream and say "no, I need to be here!" I just really appreciate the organization recognizing that terminal parents need to make precious memories and leave a legacy to their children.
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Kjones, it sounds like a great organization. The founder sounds like she was a wonderful woman.
I love the title of her book and Bible reference, that's always been a favorite of mine and it really speaks to my heart tonight: Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
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I would completely agree that I'm learning so much from these boards! I have started writing things down to research them that people have mentioned. I feel somewhat empowered in this time of uncertainty and confusion thanks to so many of you!
My Mom mentioned joining a support group - but I think I may have already found it.
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CajunQueen,
I'm glad you're finding bco so helpful. It was, and still is, a wonderful resource and place of comfort for me. It's hard to believe my dx was almost three years ago. Through the ups and downs, the good and the bad, I'm still here! Learning about bc and specifically your own bc is indeed empowering. I hope we can continue to support you through strange trip that is bc.
Caryn
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Oh thank you for posting this! I've been lurking on this site for 4 years now and don't think I have ever posted. I've tried to struggle through it on my own. I was diagnosed with a lung metastasis 2 and 1/2 years ago, and had a little setback with some abdominal lymph node mets one year ago. Recently, I was getting headaches and just learned from the MRI that my brain is fine. Being this far out from metastasis and Her2+, I've been convinced that the brain mets have to be right around the corner! Ugh. Why can't I just enjoy the fact that I have a beautiful 6 yr old son and a husband who loves me even though this disease is making me psycho! I work full time, exercise daily and you would never know that I have cancer looking at me. I wish I did a better job of reminding myself to appreciate the good quality of life I have. Thank you for starting this thread. I was about to decide that I need to stop checking this site because I was worried that all it did was remind me more what this terrible disease can do to us. It's so encouraging to hear that others are doing well with mets too. Perhaps I need to stop thinking so much!! XOXO
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Hi chris14,
It is very hard to be "present" with stage IV because that big unknown, and unwelcome future is always looming over us. I hate bc. I hate every little thing it's done to me and my family. I feel like the only real weapon I have is to not let it take a single thing more than it has to. My resentment of this nasty disease is what allows me to try, as much as possible, to be present and not dwell on the scary "what ifs". If I let bc chip away at more of my life than it has to, I am giving it a power that it doesn't (yet) have. I know full well what the future can bring. I just will not let it happen a minute sooner than it has to. That and Effexor work for me. I hope you find a way to not let it rob you of happiness before it has to. Glad that you're sticking around!
Caryn
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Amen caryn.
The anger I use to remind myself that today is the best I have and it is very good. Let that be enough.
Screw cancer it will not take one minute of happiness from me.
Well said, Caryn
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I've been giving a lot of thought to normal. What is normal? Why do we want normal ? Can normal be bad? Clearly, these thoughts have been fueled by having stage IV bc. I feel like my life is back to a reasonable semblance of my old normal, yet it's not. Normal is the familiar, the known. Normal assumes a future filled with plans and unlimited possibilities. Normal is consistent. Normal is something we control. Enter stage IV bc, definitely not normal. Tests, surgery, more tests, scans, side effects, hospitalizations, drugs, drugs and more drugs, doctors appointments. It seems endless, but somehow this has morphed into normal. We just sort of work it into our lives, for what other choice do we have ? For some of us these things take over our lives, for others they become an unwelcome addendum. I see the faint scars on my reconstructed breasts, the small but clearly present bump of my port, the tiny scars from multiple chest tube insertions. It is me. This is now normal for me. But I'm rambling. I don 't even know what point I'm trying to make, what story I'm trying to tell. This was not what I envisioned, surely not what I planned but now, this is normal.
Caryn
PS: six days into parent/teacher conferences (while trying to stuff a full day's curriculum in to a shortened day) and I am obviously quite punchy. My apologies.
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Great post!! I do agree, the threat is always there in the back of my mind, but instead of making me afraid, it makes me grateful. Since making it past the initial period of shock, panic and all out fear I can now take the time to reflect and appreciate.
At first I did live in fear, but now I live in gratitude.
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Caryn,
I tend to use the word typical instead of normal. because like you said, what is normal? And who defines it. Typical - yes we can be living typical lives, it just feels less something, I am not sure what.. I lead a typical life, from all apppearances on the outside, but is it typical for most folks to be living with a stage 4 dx. Probably not
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nel,
Typical is a good word, though it made me chuckle. It is the current word of choice, among educators, when talking about a students progress or lack of. Education, like all endeavors, has buzz words and language that changes over time. Sometimes it's funny. Since we no longer put students in classes based on ability , i.e. a high or low class, we now provide "differentiated instruction" within the general classroom and during something called response to instruction, which groups students according to levels for a certain period of time during the day. My district mainly uses it for reading and the parents figure, very quickly, which is the high/low group. Anyway, rambling aside, not being typical never bothered me so that might be why I I haven't been too freaked out by stage IV but then again, even my stage IV is atypical
Caryn
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Oh, this reminds me of one of my favorite words, 'semantics', which is the study of the meaning of words. Yes, 'typical'.....'normal', they could be interchangeable.
[Tho it's understandable how you might not use the word 'normal' to classify one group of students because that could lead to the conclusion that another group of students is 'abnormal'...perish the thought!]
Nel, your comment that stage iv is typical but feels less "something" but you don't know what. I'm trying to figure out what that is, too. For me, the diagnosis took away my sense of "well-being". Well-being is another of my favorite words. I remember hearing it for the first time when I was in my 20s and had anything BUT a sense of well-being at that time, and knowing it was something I should work towards getting. And I got it. Then bc took it from me. Ha, ha, but then a well-suited antianxiety med helped me regain a bit of it. "Better living through chemistry" as they say.
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Karen, a very interesting thread, thank you. And I do admire your attitude toward this miserable predicament we all find ourselves in. I did the Harborr Bridge climb too!! It's great to see there are a few of us who did it! What a view...wow!
Susan, I am so sorry to read that your DH has Alzheimer's. I must have previously missed that. There really is not much I can say, except I am very sorry.. I feel that you, among us, is one who has lost a great deal. Not so much in the disease itself or side effects but your loss of the violin. I think that is tremendous and heartbreaking.
Chele and Carpe-diem: happy birthday to both of you! And here is to many more Canserversaries too!
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Judy, You have made me cry.... thank you. *susan*
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