Kvetching

[MJo]

Surviving breast cancer was a great gift. I was grateful and I knew for a while how important it is to care of myself, to do my best and not worry about the rest. Now, four years out I am back to old, bad habits. I can't believe that I am not taking care of my overall health, that I'm letting worries about money, work, retirement, etc. get to me. Not only did I have BC, but I had a dangerous BC, and it was discovered by coincidence. I got a big break! I can't believe I'm not taking good care of my second chance! Thanks for letting me b--ch and complain.

[karen z]

Hi MJO. So now we know something about you we suspected all along- YOU ARE HUMAN!!!!
I think there are many of us who have had the same thoughts/feelings as you do (at least I do) and what we must do is not be so hard on ourselves and begin to take it one day at a time and get back on track. I worry far too much about things I have little control over and need to do more about the things I do have control over. Since coming back from San Antonio I have decided to take things one day at a time and do some extra work on what I can control- and that involves eating properly (as if my health depended on it- which it does) and begin to walk again, do more yard work, etc. I read a very funny book about one woman's experience with breast cancer (Lopsided) and the author comments at some point how she is back to her "old" boring, complaining life and wonders a bit how that could have happened. You might enjoy that book. But I am determined (as I have also had major weight struggles since my diagnosis) to do my best to take charge of some of the basics first. Now-- as for not worrying about some other things- that will be harder (I am human too)-- but I am going to keep trying.
Love,
Karen

[ammebarb]

Hi MJo. My breast cancer was 26 years ago--They didn't test for HER2 then, but I'm guessing I'm negative. Anyway, I know exactly what kind of enhanced perspective a cancer diagnosis can give and how much we all wish we could hang onto the best parts of that perspective.....but inevitably, stresses and woes, worries and struggles happen and it is all too easy to slip back into the old perspective. For me, a worrier by nature, I figure the best I can do is "snap" backwards, at least momentarily and claim the special understanding I had right after my cancer diagnosis. I've found that I can't stay there, as it's almost too intense or poignant (for want of a better word), but it makes me realize the blessings of the moment and the insignificance of some of the worries....and I'm grateful. Knowing that your survival is a gift is a good way to come back to that better perspective about what is important and what isn't. Our every experience makes us who we are, and it's especially true of the cancer experience. I'd never have chosen to have this disease, but it does give me profound gratitude for the "now". You'll get beyond this!

Warm hugs,
Barb A.

[BonnieR]

Thank you all for sharing this as I have had the same feelings. Heaping a bit of guilt on myself for not being as sensitive and aware as when first diagnosed. It would be nice to keep the hightened awareness but it is probably an unatural state. Time marches on. It is a mixed blessing, isn't it, to have "regular" reactions again.
I had a holiday party last week and a fellow patient and friend was helping me put out food. We started to obsess over the arrangement and then I said "we are cancer survivors, who gives a s#@* over how the crackers are placed!" So, I AM learning that 'good is good enough'.....

[v-ness]

hey, you want to hear stupid? i quit smoking many years ago and during that time i ran the boston marathon for the jimmy fund two times, back when my husband and i were perfectly healthy (an officemate's little boy had a brain tumor, so we were raising money for dana farber). so, i had about a decade of no smoking under my belt when my father died suddenly of a stroke. i bummed a cig off my brother's wife in the garage to cope with the stress that night as the funeral home fetched pop's body. a couple months later i bought a pack. it lasted 2 weeks. then i bought another. and another. in november the same year my husband was diagnosed with Stage 4 esophageal cancer. you'd think that would make me quit smoking, right? think again. i smoked even more because i was so stressed out. boy, was he mad when he found out. he didn't know i was smoking before then because i did it secretly and since he was a smoker, he couldn't smell it. he only figured it out when he got diagnosed and quit. bob died only 10 weeks after diagnosis and still i smoked. i tried quitting time and time again and failed for the past couple years since his death. finally, for some reason, i just quit cold turkey on may 16th this year. i was then rewarded with breast cancer (it wasn't there in my mammo in march). somehow, though, despite this MAJOR stress, i haven't picked up another cig, nor have i wanted to *except* for the first 20 minutes after the surgeon said "you have cancer". no idea why the desire for cigs is gone, but sure am glad. anyway, my point is that it's easy to fall back into bad habits, even after you've been rewarded for having good ones (like i was for being able to run a marathon after quitting cigs). i am sure i will have to remain on guard about ever falling back into the cigarette trap again for the rest of my life, particularly now that i have cancer.

at least i didn't start drinking. i quit that in 1989 and never looked back.

even when i didn't smoke, though, i had plenty of bad habits. i drank diet soda all the time, i used Sweet N Lo, hotdogs were my #1 favorite food. since i've had BC i've revamped my diet. it's easy right now because cancer is right in my face. but i suspect that down the line i might start thinking again that hey, i'd love me some hot dogs and processed deli food. mm mmmmm. and so on and so on. i am sure it's easier to "be good" when you are in the thick of things. then easier to fall off the proverbial wagon when you aren't in Fight or Flight mode.

i guess you are going to have to find and harness your inner Quitter again because you know you want to keep cancer at bay forever more. it's not easy, and i don't know what your particular demon is, but i've overcome drinking and smoking (knock wood) and if i can do it, anyone can. good luck to you. valerie

[Mary Jo]

Hi Mjo...Boy, do I hear you. I remember when I was dx saying things like......."oh my gosh, I can't believe I worried about (fill in the blank)" "I will never worry about (fill in the blank) again."

Well, here I am 4 1/2 years out and I'm back to worrying about (fill in the blank.) The only difference is that I do recognize myself doing it and do try to change my line of thinking.

The good thing (as another poster said) is that we truly are getting back to "normal" and that is a good thing! Sadly though, it's too bad, when we learn a lesson during a hard time we can't keep those feelings fresh inside us....BUT....maybe that wouldn't be good either......Yes? No? LOL! Not sure.....but I know that normalcy is back in my life and for what it's worth......IT'S A GOOD THING.

Thanks for bringing up what I'm sure many of us experience.

Love and peace...

Mary Jo

[mcgle]

Yes, another one here who has slipped back into some of her old ways. At dx, I wasn't ever going to eat this, that or the other again, but here I am doing just that!

However, I eat far less nowadays, and have lost a considerable amount of weight through diet and exercise, though no longer deprive myself of the foods I love - just reduce portions. But if going to a function, I eat normally (don't want to upset the host), and watch it for the next few days.

We are only human, and being in a constant state of anxiety (for whatever reason) cannot be good for us.

Mcgle (UK)

[MJo]

Wow. I am grateful for these replies. I felt a little embarrassed after I pushed the button to post the message, and thought it might be kindly ignored. Thank you for reminding me that there are people who share my feelings.

[ElaineM]

We are all totally human.We are not perfect. All we can do is our best.

[karen z]

And sometimes we forget to try and do that!!
You are not alone.
k

[WolverineFan]

I loved this post as it reminded me how good this website is for us all. MJo - thanks for posting and sharing.

V-ness - A big kuddos to you! I know how hard those demons are to fight. I lost my dad to alcoholism decades before he actually died from liver failure. But, that's another website!!! Congrats on fighting so hard on your battles!!!

[Laurel]

MJo, surviving cancer is like dieting...there are those days when your resolve shocks you. You pass over the chocolate fudge brownies without so much as a nimble only to succumb another day to the siren call of the potato chips! Living means being apart of all that is LIFE, the good, the bad, and the ugly. Like it or not we are woefully and utterly human in all our frail, neurotic glory (but remember we are created in God's image!!!!).

Okay, my time to share....I get bugged when people demand (wittingly or unwittingly) of me what they would have demanded pre-cancer. Sometimes I just want to say, "Hey, CANCER SURVIVOR here! Don't need the stress of your problems. Got plenty of my own. Not the same do-it-all-million-balls-in-the-air-gal here, okay? Look, I get TIRED now. My body is creaky. I've got the estrogen level of an 80 year old. My feet are so stiff I hobble, yes HOBBLE! Go bug someone else!"

Of course we cannot say all that, can we? No, we are women (most of us) so we throw the balls up into the air and keep juggling them with our stiff hands...

[BonnieR]

Laurel, thanks for reminding me why I was so stiff and sore and cranky at the mall yesterday. I was being so hard on myself for not being more in the spirit. It's because I was hurting. I guess I feel I should be " all better" by now. But recovery brings it's own set of problems.

[karen z]

Laurel,
Your quote below summed up my feelings some days. Maybe we SHOULD just say it sometimes (and in the mornings and after sitting I definitely feel like I am hobbling along). It is a bit hard to explain this club to others.

"Not the same do-it-all-million-balls-in-the-air-gal here, okay? Look, I get TIRED now. My body is creaky. I've got the estrogen level of an 80 year old. My feet are so stiff I hobble, yes HOBBLE! Go bug someone else!"

[Midwest Alice]

Karen, I agree this club is very hard to explain to others. There is a confort here. A peaceful feeling that we can snuggle in and be who we now are. I had no idea it was in Gods plan for me to teach my children how to die.
Not tomorrow, not next year or for many years to come. God is the only one who knows the time. I plan to being here for a long time.
Though I live every day feeling that my friends and family look to me to learn how to die. Everyone is going to die, right? This is a gift (not one anyone would pick) I live with hope in our treatments and lives. I pray and plan on doing it very well, with Gods help.

Hope this doesn't flip anyone out. But you guys are talking about how we feel on the inside and this is how I feel.

These feeling give me hope.

[MJo]

You are right, Alice. Dying is natural. Being born is a big deal, dying is a big deal and living is (hopefully) the good part in between. When the time comes, I hope I can die as well as I tried to live. Right now I'm not doing such a good job on the in-between part. Have to go to a gastro doctor because my gall bladder is inflamed and liver is slightly swollen. I am so sick of doctors. Can't seem to get away from them. On the other hand, thank God I have good health care and don't have to fight for my tests. And I am definitely watching my fats.

As for the Femara aches, I live with them now. I hobble around in the morning, kind of hunched over, and it gets better the more I move. I look forward to the end of my 5 years. I am in a clinical trial now, and if I stay in, I could get femara for another 5 years. I think I will refuse.

[Midwest Alice]

MJo, The fact that we express the hard times is so important. Your post has brought many to say they too feel they aren't doing as well as they think they should be doing. On weight, diet, handling all the pain and other stuff.

Just know you are making a difference in our life by being so open with your feelings.

I guess I just want you to know though you are at a time of feeling low, You may feel your not doing so good on the inbetween part.... but others who have come on here and posted they feel what you feel. Or just read are being helped by your openness. To me, this is one sign that you are doing good on the inbetween part.



I'm praying for you and us all.

Love Alice

[karen z]

I agree Alice that being part of the club is to "snuggle in and be who we are now". I have to confess that, at times, I have wondered who I am now (how could I integrate all of the different lives time, experience, and illness brought me) but I think that things are beginning to come together for me now. And,MJo, Alice is so correct that "Your post has brought many to say they too feel they aren't doing as well as they think they should be doing" and that "this, is one sign that you are doing good on the inbetween part". I AGREE. Sharing these feelings has hopefully not only done you some good but you have definitely done all of us some good- thank you MJO and Alice for your insights.
Love,
Karen

[suzan w]

Hi MJO, wow, you said it!!! When I find myself slipping back into old habits, mostly worrying about things I cannot control, I focus on the funny half numb/ sensitive area where my breasts used to be...and how proud I am of my scars and my survival...and suddenly I am right back where I belong...happy for every moment! xo Suzan

[Jackie07]

About diet - Have you noticed that all the nutrition expert are very, very overweight? I've noticed that while I was in school. My sister-in-law is approaching retirement age as a nutrition professor/dietician. She's been struggling with her weight ever since her 4th child was born - that's 20 years ago. Now she's going to 'weight watchers'.

I, on the other hand, have been constantly trying to gain weight. Because everytime my weight had dropped, I'd find serious illness hidden somewhere. No, maintain my ideal weight is not going to prevent anything. It only helps me to be in good enough shape to fight the illnesses.

We have earned our every right to indulge ourselves once in a while. It's holiday season, just relax and enjoy... When you feel good, you may find that you don't need that much food to feel good.

[Diane H]

I hear you MJo, I often feel just the same. This is a great thread, thanks for starting it! Helps me to remember the important things, and I like your idea of taking care of our second chance .
Hugs,
Diane

[Jean]

Laurel,
Love your humor! Had to chuckle as I read your post....
the balls in the air....ahummmm know that, the hobble,
yup, got that down - and the estrogen level of an 80 yr. old. That was hit on the nail head.....

I am still laughing and smiling...I think there is book somewhere in all of this.
Jean

[Laurel]

Glad to provide a laugh! I am somewhat heartened to know others hobble too, especially in the morning! Oh those mornings when you have slept through the whole night without getting up to pee, and now it is morning and you've got to GO, but you cannot seem to hobble fast enough to the potty! Can you imagine The Potty Hobble back in the pre-indoor plumbing days? I'd never make it down the stairs to the backyard privy!!!!!

Guess we have something additional to be thankful for!

MJo, you said you are in a trial that will allow you to continue the Femara beyond the standard 5 years, but that you do not think you will continue on. I have been dreading the inevitable (God forbid!) studies that will show we derive a benefit from extended A.I. therapy! I just do not think I can toe up to that line for another 5 year stint. I know, I feel like such a baby, but really I am not sure I can make that choice. If nothing else, I feel better knowing others struggle with the notion of extended A.I. treatment. How many years do you have under your belt thus far?

[WolverineFan]

Laurel,

I just started on the Femara in October, and having never been one that needed to take meds, its been quite a challenge to incorporate it into my daily routine so that I don't forget! I am hopeful that with time, it will become just part of my routine, and I won't have to think about it, I will just do it. Anyway, my onc told me when I started that I would need to take this for five years, but to be prepared to take it for 10 because of the studies that are currently being done. Uuuugghhh!!

Happy new year to my entire HER2 family!!!

Hayley

[Laurel]

Hayley,

That is exactly what I was afraid they would start saying! Ya know, I am not sure I don't wish they find it offers no significant benefit with an additional 5 years! I'm ashamed to admit that, but I won't miss that little pill either!

Happy New Year to you!

[MJo]

I started Arimidex in May 2006 and switched to Femara about 15 months ago. So I will continue Femara until May 2011. I would like to get off in 5 years. If the study shows less recurrence with 10 years, then it is what it is. I guess we will all have to decide. I worry about estrogen depletion in my eyes, heart, brain, etc.

[Catherine]

This is a great thread. I am relieved that I am not alone in my back sliding. I started the new year being less hard on myself. Thank you to everyone for posting.

Hugs, Catherine

[islandgirl]

Hi all: I joined this group a week ago - I have never done this before, however, it is good timing. I'm on my way for Herceptin treatment today in Seattle (I live on an island in Puget Sound, so this involves a ferry boat ride - pretty actually!!). While it IS a piece of cake compared to Taxol, 5 surgeries, etc. I am tired of the ride. I overall feel lucky with my prognosis and then, when I look at my health history the past several years I exclaim "Is this really my life". Who ever expects this. My daughters are 10 and 14. I traveled to the midwest in November for my mom's 85th birthday and kind of a celebration/break for me and my 14 year old melted completely. She's a challenging kid, smart, (adopted), and intense. Part of her statement to me was "Well, you know, we've been dealing with your cancer for 7 years" and "Quit acting like everything is normal". Now I'm dealing with a seriously depressed teen and am dealing with crisis counseling appointments, psychiatrists, etc. I would like a break! They will come, won't they??? Just venting. Thanks.

Jude

[StephN]

Hello Islandgirl -
Welcome and hope you can feel at home here and get some of the personal relief that comes with sharing a common plight and all that attends it.

We have had other threads on the subject of problems with children or other family members. You might search and find some of those. As long as we are in treatment, there is the constant fear that things are not all right with us.

Ferry rides ARE great for the 1/2 hour or so vacation in the bosom of a large craft they provide. Just looking at a different horizon helps me.

I went to SCCA for 8 years to get my Herceptin. Now off of it and glad to be able to have those dates off my calendar.

[islandgirl]

Dear StephN:
Thanks for your post. It sounds like you know about those ferry rides..... being in Seattle. I had my surgeries done through SCCA and University of Washington (Ben Anderson, M.D. and a great nurse/friend, Kathie Errico). I am receiving oncological services now through Swedish and love my doc (Kristine Rinn). It's all so personal, isn't it? I sit here cozied with my younger daughter under a new pink blanket courtesy of the chemo unit I visited today!! I had herceptin treatment this a.m. and the nurses were handing out fleece blankets courtesy of the Herceptin drug company - my initial response was to cringe - good grief - and then I paused and said, "Hmmm, a $12,000 blanket (the cost of treatment for 30 minutes - I figured it's about $440 a minute), I'll take it". The nurses and I got a good laugh out of it. Yes, I know it's black humor and I'm not fond of free advertising for the drug companies, however, if Herceptin is what keeps us all alive and kicking, we SHALL enjoy this warm, cozy, pink fleece gift... It may not be cashmere, but it is I am going to carry the image of being enveloped in it's good graces......Take care and stay well..

Jude
Island Girl

[MJo]

I can count on my sisters to keep on kvetching.

Black humor, green humor...any color/kind of humor is better than humorless! I feel for you with your challenging 14 year old. I don't have kids, but my nieces made their parents crazy at that age, and they are wonderful girls now. My nieces didn't have the stressor of cancer in their mom ... In their aunt, yes, but it's not the same. I'm pulling for you and your daughter.