I just want to be normal

SoCalGal · 06-19-2007, 10:12 PM

I am addicted to this site. The information is both comforting and overwhelming. You really have to be SMART to survive cancer.

I don't want to think this hard. I don't want to eat a special diet, take special pills and worry about how my cells are working. I don't want to read about coconut and wonder if I ate too much, not enough or if it really matters at all. I am almost 50 years old. I just want to be a normal girl again. I want to wake up tomorrow and not have to worry.

nancy dip · 06-20-2007, 03:06 AM

I so agree with you!!!
I think the mental aspects of this disease are totally underestimated or perhaps just not spoken about.

I have been trying to learn about eating better and now I just eat food groups--not meals. Is this how I want to live??

Obviously I want to live, but much of the joy has gone and I cannot shake off the fear of recurrence. It taints everything. I hope that when I finish chemo things might get better.

Kindest regards Nancy

Mary Jo · 06-20-2007, 04:11 AM

Dear Flori,

I so understand what you are saying and I agree wholeheartily. The longer I am out from diagnosis though, I do find that my attitude is becoming more and more as what you wish for. Of course, I will never be the "old" Mary Jo. That changed almost 2 years ago when I heard the words "I'm sorry to tell you, but you have breast cancer." BUT, I'm coming to realize that ultimately what will be will be. I've talked with so many people and sadly, there really is no rhyme or reason to this disease.

Please don't misunderstand me though. I do realize the importance of eating right and exercise. Those are key for all areas of good health and life in general. But for me personally, I'm coming into the thinking that this is my life. I will take care of myself the best I can but I realize even that doesn't guarantee a "perfect" life in any sense of the word. I TRY not to put too much thinking into EVERYTHING that comes my way but TRY (and succeed most days) to enjoy each day for what it is. I realize today is all I have and to make the most of it.

Here's to your "new normal." May it become the "normal" that brings you peace.

From your "sister" who understands,

Mary Jo

Esther · 06-20-2007, 07:00 PM

Flori, I hear, I've been there many a time. There are times when I am super motivated to do all the right things for myself, and then there are times when I just don't want to think about it and forget the supplements, and alot of other things.

I think we just do the best we can. It's really hard to do all the right things all the time. Cut yourself some slack and allow yourself a break from things at times, then go back to it when you feel up to it and are motivated.

fauxgypsy · 06-24-2007, 07:02 PM

Flori, I know just how you feel. I do get tired of wondering if I eat this, will it cause that? I am afraid to gain weight and afraid to lose it. Do I take B6 for the neuropathy or will it make the cancer thrive? How much olive oil should I eat? After the recent news about the interactions of plastic with food to produce dioxins I have added that to my worry list. I look at all the supplements that are recommended and wonder if I would have room left for food. Sometimes it seems that the more I read the less I know. I have always tried to eat healthy but sometimes I just want to eat. To not think about the consequences with every bite. And yes, to feel normal. I feel as if my life is on hold. I am 51. I am taking some supplements, probably not enough. I think the Episcopalians got it right when they said "everything in moderation." I hope so, anyway.

Leslie

SoCalGal · 06-25-2007, 09:07 AM

Hi Leslie,
Thanks for saying how you feel. I was reading the posts on the main board - the conversations about starving cancer cells, glucose and fasting...the people posting are so bright and impressively educated on cancer at the dna/cellular level. It overwhelms my brain. I am not educated in biology - anything past the very basics and I don't really want to be. It didn't appeal to me when I was young and it sure is not something I aspire to learn, yet in many ways I am forced to be up to speed as are we all. Are all survivors proactive and dilligent in their own medical care and decision making process? It sure seems it to me. Nothing laid back about this crowd - and nothing fly by night. Everything well thought out, researched, questioned. It's a full time job to manage your own disease. Again, a job we'd all like to quit. I feel lucky to have found this online community. Many days it's the only thing that keeps me anchored. If you all can do "it" then so can I!

Yesterday, two different people in two different phone calls asked me how I'm doing and when will I be done with my chemo treatment. I was somewhat speechless as I again explained that I will never be done with my chemo. STAGE 4 - I don't know why people don't understand my blunt explanations. Maybe everyone is just used to me having cancer occurances here and there and still surviving. After all, it's been 11 years, which to me just makes me feel that the end is nearer than I'd like. I can imagine people thinking, well, she got 11 years that most don't get.

It's so isolating - "chemo until progression". Trying to live "normally" on a day to day basis - to make plans for the future, to hear others speak of their day to day lives that seem so easy by comparison. Trying to feel normal and trying to be like everyone else who gets to pretend they will live forever. What a luxury that I did not cherish

PS I meant to say - I LOVE YOUR ART. I am an artist, too. Watercolors & india ink. Am just trying acrylics for the first time - it's HARD but kind of fun, too. For me it's all about the process and not at all about the product.

SoCalGal · 06-27-2007, 09:49 PM

Hey Brenda - I also sent emails to Oprah's producers today. I think someone will contact me this summer!

Andrea Barnett Budin · 06-28-2007, 05:13 AM

Let me give this a whirl here. Your post made me happy, Flori!

Okay. That did not work. Simple. For morons. Maybe the REPLY (magic) part of the instructions allude me. Oh, Flori. Help a mechanically/technologically challenged gal.

If you look sideways -- the colon and end parenthesis look a little like a smiley face.

Where the heck is REPLY (magic)?????????????????

Going in for scans now. Drank my drink. It's raining. But my heart is smiling cause of your NEW SIGN! Love... ANDI

Andrea Barnett Budin · 06-28-2007, 05:15 AM

I'LL BE DARNED! Like magic.

It appeared!

I'm giddy w/joy. Will think of your smiley face tip while WAITING for my scans...

Andrea Barnett Budin · 06-28-2007, 04:31 PM

Had my CT scans this AM. NO EVIDENCE OF METASTIC DISEASE. STABLE. Thank you God. Thank you body. Thank you mind. All systems working together...

I did NOT use my port for contrast, as you wise women, and my chemo nurses and my onc just told me, in passing. After all these yrs of scanning regularly since '98. Yes, they always used to saline flushes and heplock. No, I never had a problem. But I will never take a chance again with my precious port. So they stabbed me a few times, and dug and dug, to thread it in. Not horrible. I have one good arm, as most of us and one good vein in the middle of my wrist, which ALL wince at approaching, hating to do as I plead. They all start off w/the juicy looking one and become so dismayed when it fails. They pump saline in to be sure it's working and IT'S NOT. I get a big bubble of saline. They call for reinforcements. Next. Please use my wrist. I know you think it hurts the most, but the hand hurts more. I promise you. They gave me a nice bandage cuff to go home with. And, in accordance with my plea for a SAME DAY REPORT, I got the results in 1 1/2 hrs (rather than waiting most of the day). They spoil me. I can't take the waiting. And Paul is worse than I am. He gets so nervous EVERY time. Still. Bless his heart. Wishing you all good reports, health and wellness, joy and harmony. With much love my sweet Soul Sisters... ANDI

lilyecuadorian · 06-28-2007, 06:57 PM

congratulations i soo happy for you .....mean it

hutchibk · 06-28-2007, 07:49 PM

Andi - I too have the 'vein in my wrist or hand' conversation with any new tech who needs to get some blood outta me... many of them spend unnecssary time trying to convince me that it is too painful and that they should go into the traditional elbow bend area. They are terrified that they will hurt me. I have spent many a moment convincing them that on me it is the other way around, I don't really feel it in my hand or wrist, but it hurts like heck in my elbow bend. One tech I argued and argued with because she refused my way (for CT contrast) and then after I agreed to her way to prove the point, she blew the vein and I moaned in pain - so she had to get her supervisor to access my hand which I barely felt. I had the biggest bruise for a couple of weeks... but she promised to never question another patient who wanted it in the hand. I should know, we have been doing this for almost 4 years now!

SoCalGal · 06-29-2007, 07:35 AM

Andi,

Thanks for sharing your fantastic news. Made my day and it's only 7:30 in the morning...I have my pet on 3rd of July. My stomache flips just typing the words. You'd think I'd be better at this after 11 years of practice.

Have a wonderful day today - bask in the good news, you certainly deserve it!
Flori

suzan w · 06-29-2007, 08:23 AM

This has been a great topic! I just got back from a week vacation and found a "lump" (pimple) right between my mastectomy scars. Because I had been on an airplane from one end of the country to the other and back again I had an " achy node" (stiff neck). Convinced it was the worst...It took a call to my oncologist who told me it was nothing and she will see me in 2 weeks at our regular appointment AND finally a visit to my PCP who told me that it was indeed a pimple, and I had a stiff neck from sitting up all funky on the airplane. Ibuprofin (now, why didn't I think of that??!!) worked on the neck and the pimple was almost gone by the time I got to the doctor's office. That's why I love this topic, because YOU all GET IT!! (

trying the smiley face insert! NOTHING is NORMAL anymore! I worry about everything! I am a very spiritual person, was before my diagnosis-thank goodness!!! Sometimes, however, the creeping worries can overshadow all my good intentions, no matter how hard I try. Yet, here I am, in my "new normal"...trying not to waste a moment! Every time I log onto this site it is such an upper visiting with everyone! Thanks!!!

Joy · 09-21-2007, 07:56 AM

I SO KNOW HOW YOU FEEL. I often say to my family in tears that Ijust want to be normal. Whatever that is. Remember as we get older everyone has health issues and that becomes their normal. But Stage IV cancer is a crazy ride, crazier than most. You are inspirational and funny and gorgeous-so maybe you can never be normal becaue you are soo exceptional!

MAB1943 · 09-20-2007, 02:58 PM

to all in this support group. Thank you all for the important info, I searched so long to find a site that could relate and be informative about herceptin, and Thank God I found it. I just want to tell you about myself then my philosophy on my cancer.
I started in 1995 w/microcalcifications and for 10 years every year I would get the same report, no cancer, benign condition, recommend annual mammo's. Well in 2006, I started to hurt in my right boob and nipple. I was just past menopause, so I wasn't sure that what I was feeling was part of the hormones still kicking around. Some told me to go for an exam early so I made the apt and told the dr. what I felt, he ordered a mamo and after exam told me he felt nothing and go get fitted for larger bra. He felt that I had soft tissue there and the bra was pushing my nipple in. SO I went for the mammo and got fitted for new bras. I still felt the discomfort and then I started to notice my nipple was sinking. I got the result of the mamo which no change from all the other years, but now I noticed a tiny drop of blood inside my bra, I immediately made an apt with a surgeon who told me he was going to do a nipple biopsy right away. The biop was done Aug 30 and he called me that I had DCIS. Stage 0 he told me, I did NOT have cancer. HUH??? Anyway thank God he decided to send me to a cancer hospital for 2nd opinion. They read the same biopsy smears and the same mammogram film and found that I did have a 5cm cluster, I went for a stero tactical biop and it confirmed invasive breast cancer. I was to have a mastectomy in Nov and got it done without any complications and no lymph involvement. The biop from the mastec came back that I had HER2 NEU 3+++ and er and pr negative my stage was 1 and I was class 3 FISH. I went in with a positive attitude and no one could believe how good I was doing. I met my onc dr. and she told me because of
the grade 3 and invasive cancer, DCIS and paget's of the nipple, and being her 3+ and er/pr neg I would have to have 6 months of chemo, started 12/15/06 @ 3 wk intervals ac/dc and taxol then taxol and herceptin every week for 6 weeks, and now I am on only herceptin every 3 weeks until end of dec. Well I skated t hrough with the normal but not excessive side effects the most troubling being the steroids they gave me, I didn't do well on them at all. Bloating/gastric distress/enlarged liver/had to be put on insulin/neuropathy and sinus infections and insomnia. I was one sick pup, but felt not as bad as some people. I continue to have a good attitude, but this is the problem. Now that I am done the chemo and am almost done the herceptin, I feel
anxious/jittery/nervous and have a terrible time sleeping. I eat good, but feel very tired. My sugar is normal with insulin, but I now don't have such a good attitude anymore. This doesn't compute in my mind. Everyone and everything bothers me more than ususal. I don't want to talk to one of my friends who has NOT been supportive in the way I felt she should be, because she just doesn't think I am THAT sick. And she had a serious illness 2 years ago and was gravely ill, but not with cancer and she thinks that her and my illnesses are very simular. It was just as hard on her husband to deal with her illness as it is for mine to deal w/my mastectomy.
I don't like talking to her anymore and then I feel guilty about how I feel because I am sure she doesn't mean it the way I take it. I am grateful that I found this support group because you truly do understand where I am going and where I have been. And nobody else really does. I do have a very supportive husband, and best friend of 50 years and for them I thank God. But do you think it is normal for me to feel this way now that I am getting down to the end of the treatment.
I feel that I don't want to worry about my treatment or anything else because that is what I have a doctor for, and if there was anything to worry about she would tell me. Therefore, I will live my life day by day and I feel that I will not ever be me the way I was prior to bc, I can only be me the way I am now and in the future. Is that wrong?
Thank you for listening.
Mary

Sandy in Silicon Valley · 09-20-2007, 04:55 PM

Hi, Mary -

I sure do hear you - about your frustration with your misdiagnosis at the beginning, about being fed up with friends who bail or just aren't appropriate in response to your diagnosis and treatment and fears, about being thankful for the supports you do have, and about wanting to be present in where you are & what your health status is day to day.

The major way our responses are different (and every one of us is unique in how we deal with this) is that I'm a control freak of sorts, and I don't want to leave the future of my care in my oncologist's power, whatever my dx/tx status. But that's a minor issue, compared to the rest of our common experiences, I think.

In fact, two out of three of my daughters don't want to make any allowances for me because I have Stage IV cancer and am undergoing a panoply of treatments to maintain as much quality and quantity of life as I can. They're grown, and have their own lives, and if we're playing on different fields/ different teams for a while, oh well. Like you wrote, I've got to do what I've got to do. They can like it or lump it, but at this point, I'm not about to turn myself inside out to be the accomodating, accepting "mommy" they expect/want me to be.

About 6 months after my bcmets diagnosis, and the first round of treatments, I got very depressed, and pretty anti-social as well. It just seemed like nobody - including my husband, who is a good guy, but a geek & not very in touch with his or anybody else's feelings - could understand how I felt or encourage me to talk about what I wanted to discuss. Online support became a lifeline - in the threads that were brought up, many times I could read about someone going through, or feeling, something that I could genuinely relate to, plus I got a huge amount of information that I could actually understand - not medical jargon.

Unfortunately, after about 3 months of hiding out and being p.o.'d with everything and everyone, especially disliking my own NOT NORMAL self, I became very morose, and started imagining commiting suicide as an improvement on how lousy, lacking any enthusiasm, angry at the world, I felt most days. I imagined driving off an expressway overpass I traveled everyday coming home from work. That really scared me! I also wasn't sleeping well, woke up at 2-3am, wide awake and needing to get out of bed and do something - which left me extremely tired when I was at work.

So I searched around for a well-respected psychiatrist, got my anti-depressant meds (I'd been taking since about 7 years after my initial Stage II diagnosis) changed to something that was also anti-anxiety, and settled, very reluctantly, for the "new normal" that my life had become.

The psychiatrist taught me some useful self-hypnosis- type exercises to get more relaxed and sleepy, when I woke up before dawn, and most nights, I was able to fall back to sleep. Over time, I shed some old friends who just couldn't "get it", rediscovered others who'd never abandonned me - and if they seemed insensitive sometimes, I let them know. They may have kept at a safe distance, while I was in major funk mode, but they were willing to meet me half way, once I was feeling somewhat sociable again. I recently joined a live support group as well, and have made new friends who are dealing with metastasized breast cancer and the different issues that pop up when there's not even any hope of a "cure".

It sounds to me like you're making a steady adjustment to your own "new normal". Leaving your bc care in your doc's hands, if you trust her/him, is a great way to not have to think about having bc all the time.

Reading and writing to other women who've experienced one or another aspect of what you're going through (like on this and other support group forums) are also great ways to feel "normal" and validated. Maybe you'd like a "live" support group, if there's one in your locale.

Returning to engage with as many of the people, activities, and goals that you had before your dx can be another way to get on with living. If your treatment has left you with some limitations - even if it's about not having the patience to deal with insensitive people - then finding some new/ replacement friends, activities & goals may infuse more enthusiasm and enjoyment of day-to-day life into how you live.

A combination of strategies has helped me come to some self-awareness of what I need for me to function optimally, when the disease isn't front-and-center in my life. When tests and treatment are necessary, I give my "normal" activities over to dealing with whatever is necessary, knowing that's temporary.

I wish there were a list of all the different ways that different women have found to cope and regain a sense of themselves - then anyone struggling with identifying who she is and what she wants from life could pick and choose among the list, try out different suggestions, and move on. But I think that the list would be as broad and varied as the women represented on this forum, and that number of choices could easily get overwhelming.

Since your post indicates that you've already determined some of what you want and how you're going to get it, I think you're quite well along in finding out who you are, and how interesting and cool life can be, after a bc dx. Wishing you much success and satisfaction carrying on from here on out...

(((hugs)))
Sandy in Silicon Valley

MAB1943 · 09-25-2007, 06:36 PM

Sounds like we really have a lot in common in our thinking. Never thought I'd feel that at my age I would be eliminating those I felt were so close to me, but looks like when I made up my mind to fight the battle, it meant colateral damage too. If people don't understand then it is because they don't wish to understand. It is a hard nut to break but oh well. Ah yes, bc is a lesson in itself. I wish all of you who are going through this event, peace. Sometimes you just have to go it on your own. I have great faith in my onc probably because she herself is a bc survivor, and I truly believe she understands what I am going through. Thank God my husband has not disappointed me too but I wouldn't have expected him to be any different. I believe I will be on this site for quite a time yet as I work my way through it all. I was informed by my onc dr on Friday that I will be on herceptin until the end of March. I will stay positive.
Mary

Vanessa · 09-26-2007, 08:58 PM

I know many of you try to eat well and so do I, but one problem I have is being very sensitive to the steriods. Even when I try my best to eat well, I have very strong cravings for sweets, Cheetos and other non-nutrious foods. I have gained so much weight since I started chemo and when I was on break from chemo I began to lose it very fast, but gained it all back when I started taking them again. Does anyone else have these tremendous cravings and how do you keep from gaining so much weight. I feel like the steroids have so much control over my life and I feel so weak. Any suggestions?

tousled1 · 09-26-2007, 09:01 PM

Vanessa,

I get the cravings for the sweets with the Decadron and I just let my body tell me what it wants. I'm fortunate that my weight has remained stable so I'm not going to worry about it. I think we're supposed to be enjoying life and if eating some things that we know we shouldn't is enjoyable then do it. Don't sweat the small stuff. There are bigger battles to fight than gaining a few pounds.