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Good Morning All, I woke this morning with a smile on my face and determination in my heart.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Cancer! Pishaw! Onward and upward and such things. I'll just try harder that's all.

How about you? What are you guys planning on doing to have a marvey pooh life?

Love you,

Enjoy your day, whatever else there is, enjoy your day!

Breakfast- 1/2 organic lemon in filtered water+1/2 avocado with salsa. Both for my liver function. I'm no saint, so I also had a lovely cup of fresh ground french roast with creamer, that's right, Baby, creamer. Yikes. Hopefully there's more good stuff than stuff that'll kill you.

culka's picture
culka
Posts: 158
Joined: Oct 2009

Best part of going back to work is that you CAN.
Last year I was scare too, I went back to 2 full time jobs. First week I was dying, but that feeling "I can" was priceless.

today morning menu: Smoothie- banana, frozen peaches and mango (from California, no sugar added), water and bunch of swiss chard.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I've been pondering all that I have read today from all the threads. Should there be a site where we can chat about the REAL issues without people watching? What to eat? What to think about reports, etc. Well, I will finally chime in here.

I think we need to live life in a balanced way - not all of anything. They say "all work and no play makes Jack a dull boy". I am struggling with this. I think I work too many hours and it zaps alot of my precious energy. Yet I need my health insurance. I am trying to purge the extra stuff that I've collected and simplify my life - this takes time but well worth it. I am starting to clean as if I am dying. I'm sorry if this offends or shocks anyone, but I need to face this reality. I admire Linda for making that attorney appointment. I need to do the same. I need to get my will made. I've actually thought about my funeral and have talked a little with my hubby. I've booked an awesome soloist who will sing Ave Maria!! As I attended the funeral of my young priest last Sat - there were 70 priests on the altar for the mild mannered Polish priest who died - I thought that this would be the program I would want. I don't think it's maudlin - just practical. When I attended the funeral of my breast cancer friend who died after fighting valiantly for several YEARS - I liked the meditation exercise they did. That might be added to my program.

I have thought that if I have a recurrence, I will quit my job like Linda is talking about. I will have to figure out the insurance problem. I will need time to really fight my disease and yet have some fun too. I would need to fill my time with meaningful things because too much free time thinking about cancer plays havoc with my brain and mood - I get scared, tearful, and anxious.

I think we should have a thread HERE to talk about these practical things and things that are truthful. We have connected so much with each other. If we go elsewhere, I think that connection will be lost. Claudia, are you afraid to say something controversial or that you will be targeted as some wacko or censored? Maybe I didn't understand your reason clearly. I already asked ACS for a discussion board for NUTRITION AND ALTERNATIVE TREATMENTS which went NOWHERE.

Well, I guess I have said enough. Blessings to all you ladies and your families.

Mary Ann

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I guess my "letting go" was not on the best thread for that info. But things do tend to take their own life sometimes. Something you said on this thread got me thinking - probably about going back to work.

Actually this whole board is one big discussion when you think about it. I'm up for whatever.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I've wished for a place we could "let it all hang out." But then sometimes I day dream and wish someone would stumble across these blogs and take them to heart, I mean be slapped on the face with the suffering and be motivated to do research to help us. But I think because it is open to the public we hold back some.

Going back to work was hard for me. Still is. I too feel this is draining me too much and I like my health insurance and feel safe with it. I wonder though if I should be taking more walks and signing up for writing or painting classes. I wish I knew how I will do with this frightening cancer so I could make better decisions. If I knew I didn't have much time left I would quit now. I don't do well on chemo. Could I really have fun on chemo? My body hates it. I can't control my reaction to the drugs.

We have talked about burial places and I gave my husband my preferences but left the final decision up to them. I don't know if I would plan my funeral, I feel it is for them, my family, whatever they would want to comfort them. We've done the legal stuff. It's easier to do before you are so sick. It is nice to share this hard feelings with you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

It was really good for my husband and I to talk about inheritance and all the scenarios for what would go to his kids - vs - my kids BEFORE we went to the attorney, and surprisingly helpful to talk about everything again in front of an objective outsider. I was surprised to learn that my husband also wants to be cremated (just like me!), and he surprised me with some extra generosity to MY grown kids in his own will (we each have 2 kids from former marriages), in appreciation for me leaving him 100% of my retirement savings intact. We are forming a trust for the grandchildren together, and he will now also add to the college fund I started for them. It was a good meeting and a good thing, and we left feeling peaceful and happy with each other and our plans.

It will be hard for me to ease away from my work, as my business is also like one of my children as I have put so much of myself into it. But I'm making the move January 1, but staying on the payroll until I die because it's MY turn to get 'money for nothing' after putting everyone in the family on the payroll all these years! I know that I will still spend considerable time this next year transitioning and training so that I can really walk away from my business and know it'll survive. I'm excited by all this change. It may be happening sooner than I ever imagined, but this way I get to see my dreams of my boys taking over the business I built come true, and if they work it the right way, be assured of their financial security long-term.

My worst fear, recurrance, has happened, and it's surprisingly liberating! The taxol alone won't be too hard on me, and if we decide we want to go somewhere, I won't hesitate to skip an infusion or push it back a few days to travel somewhere. I may not even wait for a remission to head off for an Alaskan cruise in the spring! I'm gonna be a HANDFUL from now on! LOOK OUT WORLD!

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dearest Linda,

I never ever thought you shouldn't share your recurrance on line. Actually, I wasn't thinking about that at all. I think your sharing completely and without inhibitions helps so many of us. I often think that many of us could be as open as you are if we had a forum that wasn't open to the public. For myself, I would like to see more openness and sharing. I often hold back my feelings (trust me I can gush) because it is a public forum. There are so many emotional feelings to deal with this cancer. I often agonize over little decisions myself regarding my treatment, prognosis, feelings, worries etc that I feel I would be using a public forum like this inappropriately. Should those feelings be dealt with in therapy? Is this therapy? Would I be dragging everyone down with my little worries?

Sometimes my family gets a little worried about me when I worry about the people I've met here and how they're doing. They feel that I need to get away from cancer and not more involved in it. We all know we need a break. There are many issues here with no hard fast answers. I am glad we are sharing more without fear. I just thought perhaps we could do more if somehow we had our own forum that was more private through the American Cancer Society.

Thank you all for listening to me. Sometimes I am afraid to listen to the recurrances and sometimes not. But I suspect that I will be like you, and feel liberated from the worry if it occurs. I love you all.

I still think Oprah should unite us all on a television show and then throw a few million into research!
Diane

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009
deanna14
Posts: 738
Joined: Oct 2008

I know I keep using the word grace... but it is true! You inspire me, and I am proud to call you my friend!
Enjoy this transition and the liberation. Funny that you mention an Alaskan cruise, we have been talking about this too. I have not had a chance to look for a travel agent yet, but intend to do so right after Christmas. Please share any info you find out about the Alaskan cruises.
Love and hugs.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009
california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

There is no hope of avoiding people thinking I'm a bit off. I don't care at all about that. My concerns revolve around the dashing of hope. Let's take a look at a person with a cancer diagnosis coming here looking for answers to the basic questions. Mostly, they're looking for information about how to get through this and what to expect. I don't thik they need to hear the worst that I've discovered, which I feel needs to be put out there in order to effect more effort to a possible... I'm taking this discussion off line so I don't inadvertently do what I have tried diligently not to do all this time. I will say what needs to be said, and I don't care, as I've said about my reputation, I do care about hope dashing though.

I'll email you and Jill and Diane if I can find her address. Hang on a bit, I've got some other things going on right now.

Claudia

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I know of women who were at one time 'regulars' here, but when they had a recurrance they didn't post it. Instead I'd get an email and we'd work through it, just the 2 of us, off-board. And the reason for it was just that: to NOT steal away hope; to NOT send that shiver of fear into every heart.

So maybe it was selfish of me to spill it all here. In the unfolding of my recent drama, I was with all of you, thinking that my story of "rising CA125 / questionable CT-Scan / PET-scan" would have a happy ending that would be cited as another example of proof that scary diagnostic results don't always mean recurrance. But it didn't turn out that way. (as far as we know). And by then, I already had everyone waiting on the edge of their seats, and I couldn't just leave you hanging unknowing. And I NEEDED you all, STILL need you all.

So let's factor all that in when we think about holding back so as not to scare people or steal away hope. I filter everything I say to my family and friends, protecting them as much as I can from added pain or worry. I know you all do that too. This has to be the one place where the filters are off. People with recurrance are SCARY; I know that. But if the supports fall away at the darkest hour, what are we really doing here?

What you ladies need to do is OFFSET my bad news and Fran's bad news and all news of recurrance with your own ENDLESS REMISSIONS! Offset the scary news with your own WONDERFUL inspiring news of CURES and cancer-free decades! That's an order!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Of course you should say what happened. I have absolutely no problem with that, you need us, we need you. that's not the issue at all. Wouldn't if have been wonderful if those women who did not want to upset the other women on the board had a place to go and just let it all hang out? No, we don't want to scare the newbies, sorry those of you that are, what I'm referring to is all the theoretical thoughts and ideas and speculation, all the what if this or what if that. Stuff that is not concrete but thoughts need to be nourished in the right atmosphere and don't think clogging up this board is the place to do that. I've already sent you and email explaining all the thought behind this. I'm waiting to get Diane's email to send it to her.

Let's say we get together online and read those things recommended by one of us and discuss what the implications are. Then once the discussion is over if we feel we have something of import, we will come back here and say what we think.

This sounds as though I am thinking of opting out of here, nothing could be farther than that. I would like to go off line here to be better when I post here without all the speculation. I definitely want a public forum, but for people who are not simply looking for information on whether or not, say it's cold in the room where they get their CT, which is a very real, very genuine concern.

am I making any sense? The better question would be, do I ever make any sense????? Eh????????

Actually, it's not something that needs a great deal of discussion as it's something I had decided to do. Anyone interested in chiming in, is more than welcome. I'm going to go have some much needed tea.

Love and kisses,

Claudia The Opinionated

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Diane, I like the Oprah idea ALOTTTTT!!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

MaryAnn,

I think your post was spot on....I have thought so many of the thoughts you have been entertaining...

I learn so much from all of you :)

Laurie

Northwoodsgirl
Posts: 201
Joined: Oct 2009

As a "newbie" to the discussion thread I have found your gentle mix of real emotion with practicality very helpful. I do agree that it is hard to bare one's soul during the most difficult times of the cancer battle/journey but where else can one do it?
You ladies are the only people that I know who actually get what we are all going through.
Balancing hope with the brutal realities of what we all have been through....the ups the downs....feeling pretty good and feeling absolutely beyond what mere words can describe. The physical, emotional and spritual roller coaster.

I also like to hear what everyone is eating these days. I am making the transition to as much organic as possible, avoiding sugar ( reading lots of labels) no caffiene (sp?) and avoiding white flour. But would like more knowledge on nutrition.

I also am thinking about trying to go back to work again. I had an executive level position but don't think I want that lifestyle or the stress. But of course there is the issue of insurance.....

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

I wish I had a job. I think you should at least try, and do your very best. Accomplishing things is very, very good for the soul.

As a side note. Within a few days of deciding to visit my sister, after she had asked on numerous occasions that I come out, she got a job with Intel after being unemployed for quite some time. Now this with a possible visit from me and you get a job offer. So anyone looking for work? Invite me out, you might just get a job offer.

Forgive me for not remembering this, but could you tell me what your cancer history is, as I see from your profile that you are not longer in treatment, and you mentioned the Yale doctor so I am asuming you have been in treatment. I am not awake as yet, and the light might go on when I remember, but right now my face is all scrunched up trying to recall and looks like poooh.

Love,

Claudia

Stage, nodes blah, blah, blah

Thanks

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I vote for adding more to your life. When I was recovering from my surgery, I made a decision THEN to be more than a cancer patient. I actually dislike the term "cancer survivor" and prefer "cancer thriver" which I am working diligently on. I decided that cancer was part of my life and I would not be defined by it. So work, for me, is vital to my mental health which in turn promotes my physical health. The trick is in the balance.

I hope you get this job and use it as a springboard to get back into a life balanced with work, play, joy, peace, love, and excitement.

Blessings and light, Mary Ann

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Mary Ann,

Now you've brought up another emotion I had simply forgotten about. I am all about the duty and nothing about the life.

I was just trying to recapture joy.

And now i am reminded I forgot yet another emotion--excitement. CRAP!!!!!!

I feel defeated. Where in the heck am I going to find excitment in this jerk water town and I don't even know what that expression means. Hope it's nothing bad.

See ya, I'm off to see if I can find the things on my list:

Find:

Joy
Excitement

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Jill,

After I had breast cancer I decided to just do life. I realized that if I worried about cancer coming back all day that I would have wasted that day. what if I lived? Then I had wasted my life worrying. I had breast cancer ten years ago. I also looked around at the people around me and said, hmmmm I am just as much alive as they are today. I never followed my tumor markers; I just asked how they were and he said "no trends." I reviewed them once years later; they were up and down and I am glad I didn't ride with them.

I read something a breast cancer woman wrote after being treated. "When I get down and out I go out and try something new, something I've never done before." I did that. I took sailing lessons. Joined a writing group. Bought a diamond ring for myself for my 25th wedding anniversary. Swam with dolphins. Scuba diving the carribean. Even tried golf (now that's a slow game).

The internet does wonderful things. But it's not healthy for me to spend the day googling serous cancer for another straw of hope going my way. I stay aware of current trends. For breast I got to breastcancer.org. for this I don't have a special site for uptodate info but have a few special places I check. But it's important to let go. to have a balance. Work is good in many ways. I am older now and would like to do part time so I can pursue some other hobbies too.

Diane

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Hi All:

I recently completed putting up over 30,000 led lights at my house. (Actually I have no clue how many light but there are a lot!) They are synchronized to music. We live on approximately three acres so we really Light up the place! If something has to LIGHT up I rather it be Christmas Lights! I took some videos. I don't how it looks. It was a lot of work and I wasn't going to do it but every year I hear how people look forward to seeing it and make special trip past my house to see it.

Have a sparkly shining day!

Kathy

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Maybe you could post a photo for your picture on this site.

and that is one heck of lot of lights. You had help??????

amen to the choice of which to light up. I also vote for your lights.

Love and Merry christmas. Hey, when you tell us where you are we can Google may you. How exciting!!!! Can't wait.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It sounds like you are definitely looking for that geographic cure. I think we can have excitement if we look for it wherever we may be. Have you ever heard the saying, blossom where you are planted (or something like that).

When I got my new doc - after grieving PROFUSELY about losing my handsome young doc - he asked me, "Do you see the glass half full or half empty...I see the glass 3/4 full!". He gave me something to think about - he always tells me to stop think so much about cancer. He gets on me when I talk about this site.

You mentioned getting docs to read this - good luck, I don't think they will because they are too busy and our stories are so varied. If we want them to read it, then we need to synthesize it for them and hand it to them on a silver platter with comments and questions, etc. Jill being the editor and you being the researcher, what a team that would be. I also think that my doc discounts alot of this info. When I thanked him for NOT recommending radiation because of all the horror stories I've heard here, he said (to his credit) "radiation does alot of good for alot of women, you just aren't hearing from them on that site". Makes sense. We need to remember that we are a very small segment of the population. Most people are NOT talking here. Fran's recurrence is probably an example of "off the bell curve" - the anomaly.

With your personality, I don't think that you will have any trouble having a grand time in your little community if you set your mind to it. Sorry if this sounds harsh. I'm jealous when I hear you have a daugther and granddaughter there.

I just talked to a woman battling recurrent breast cancer for the last year - her doc "smacked her upside the head" about not pushing herself more to enjoy life. My friend stays home alone and thinks cancer 24/7 and has a poor quality of life. The doc said, "What am I treating you for?..You need to get out and do things and stop thinking of cancer all the time" (easy for her to say, but she has a good point).

Anyway, I'm rambling. Grab that excitement, girlfriend. It's out there waiting to be had!!

Love, to you. Mary Ann

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

You may be right, excitement may be out there waiting for me, but it's absolutely, positively not in this --------@@#$^*((*%*&^(&)) town. Luckily for you, you don't live here. No taxi, bus line, movie theater, mall, restaurants that don't allow smoking. There is one library, which I do frequent.

Anyhow, finding excitement outside of my apartment would be a useless endeavor. I don't want to go to a bar or kill a deer or fish, nor do I choose to spend time making fun of people I don't know, speaking poorly of all people that are not white like me, swear at the top of my lungs for no apparent reason, let my children run around with no guidance, cause I'm too busy drinking, kill helpless defenseless animals. Have an intelligent conversation, forget it. The talk is only about blasting some poor soul for some stupid mean spirited reason. I really can't stand it anymore. The list goes on and on.

Oh, now wait there is one bit of excitement. If you should be out walking around, you do have to really speed up when you cross the street cause rather than slowing down here, people speed up for walkers. They like to see them run.

You have made me think of how much I hate it here. When you've lived in places as wonderful as New York City and the area around San Francisco in California, where you can go anywhere without worrying about second hand smoke, where people have to let you cross the street and get cited if they don't stop. I am so upset right now, I can't even say. But you have done one really good thing that sitting around moping never did, you've made me face how very much I hate it here. Summers refers to this as the meanest little town in America.

I am going to paint and do whatever I have to do to get out of here as soon as possible. My heart is just pounding now that I have let myself actually think about my non-existence here, forget about excitement altogether. I love you. I don't mean any of this to sound as though I am at all annoyed with you. The annoyance is completely with myself for living such a tiny little life.

Regardless. the rest of your guidance struck a cord. I'm going to do what I can. I'm going to go paint and do much less rather than much more on the board.

See ya all later. And best of luck. Signing off.

your friend,

Claudia

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Claudia,

You can come and visit me in Massachusetts!!

Laurie

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

I live in Jefferson Hills, Pennsylvania. It is about 16 miles southeast of Pittsburgh. As soon as I download my video, I will let you know!

My husband and I do most of the lights. We usually have two younger men go up on the roof to do the outline. However, this year we did most. (I even made extension cords) Crazy as it may seem, we even went up on the roof. Yikes! It took about three weekends. Our boys helped too (but they are teenagers).

I will get back to you soon!

Kath

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

I live in Jefferson Hills, Pennsylvania. It is about 16 miles southeast of Pittsburgh. As soon as I download my video, I will let you know!

My husband and I do most of the lights. We usually have two younger men go up on the roof to do the outline. However, this year we did most. (I even made extension cords) Crazy as it may seem, we even went up on the roof. Yikes! It took about three weekends. Our boys helped too (but they are teenagers).

I will get back to you soon!

Kath

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

moving this comment to the right thread.

deanna14
Posts: 738
Joined: Oct 2008

I don't know what I would do without all of you and this board. Sometimes it feels like I am crazy and yes, my family believes I think about all of this cancer stuff too much. What I want to say to them is I love you, but get a diagnosis of Stage III Cancer and then tell me not to worry so much!!!! I can say whatever I need to say here and I know there is someone who is going to understand. Some of you walking in my shoes right now. I don't see any reason to hold back here! If they want to remove something I post, then at least I have gotten it out of my mind and on paper (so to speak). Sometimes we just need to get things off our chest so we can move past it. And none of us want to put all the burden on our families.
I say, let it all hang out. We are supporting one another and this is what this board is all about!!

I just love all you crazy gals!!

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

Your subject line hit a chord with me. The song came out after my husband of 31 years died and I was struggling to figure out who I was and how to live life without him. It wasn't easy, but I did.

Fast forward to my cancer diagnosis on Oct. 13 and I'm smacked by it again. My new husband was a short term caregiver to his wife who died 6 weeks after her lung cancer diagnosis...he knew where my head was for a bit and had to be scared, too. Other than the tears that fell the day I told him the diagnosis, he has been my rock and my cheer leader.

Truth be told, I have always been a survivor...abuse in many forms from my father as I was growing up tainted my view of the world until I met my first husband and he taught me how to appreciate all the good that is in this bad world. My late husband loved life and shared that gift with me and everyone he cared about. I learned a lot about living from him.

His example has been my guide for learning how to live as gleefully as I can no matter what. Doesn't mean I don't go down dark holes sometimes...widowhood sent me there quite some time...but, each trip down makes me stronger for what ever comes next.

As a newbie to this board I have to say that I LOVE the openess that some of you express here...good and bad. My view is that we have to be both hopeful AND realistic. Sure it's a little scarey to read about recurrences, but even with a clean bill of health there's always that possibility.

What I admire most is the blunt honesty mixed with the hope of "I'm gonna go out kicking and screaming". One of my favorite quotes during my widowhood has been from Rosalind Russell's character "Mame" from the same movie:
"Life is not a journey to the grave
With the intention of
Arriving safely in a pretty
And well preserved body,
But rather to skid in broadside,
Thoroughly used up,
Totally worn out,
And loudly proclaiming,

WOW !!!! What a ride!"

Once I got over the initial fear from diagnosis, I figured it would come in handy to continue thinking that way. The butt ugly scar from belly button to south pole is a daily reminder that I could have ignored the signs more years than the 3 I did and died. I'm alive and for however long that is...it's what counts.

So...for what it's worth from someone a very short time on the cancer path...please...please...say what needs to be said. Public or not, ya'll help those who isolate themselves out of their fear.

I apologize for going on...I tend to get long of lung when passionate about something...the truth is the truth even if we don't like it.

You are an amazing group of women and I'm glad to have found you.

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