I just want to be normal - Page 2

lilyecuadorian · 06-28-2007, 06:57 PM

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

Andrea Barnett Budin · 06-28-2007, 07:30 PM

Wishing you all I wish for myself! Really and truly... ANDI

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!!!

Andrea Barnett Budin · 06-29-2007, 12:47 PM

No matter who you are, new to bc, or a veteran warrior -- the test that could/might/please God won't looms large. Keep thinking I'd do better, I don't. Except this time, when I was busy being scared for Paul and forgot about being scared myself, for myself. Well, that isn't good. Diversion IS good, but by scrubbing a stained sink, writing, painting, whatever, NOT obsessing about a loved ones' saga of woes. But we do what we must, and surprise ourselves how strong we can be! And that alone is EMPOWERING, which is UPLIFTING...!

Yes, a pimple on my chest/declotte area freaks me out. I think, I never had skin mets. WHAT DO SKIN METS LOOK LIKE/FEEL LIKE? I don't think I want to know. Yet, of course, I do. To be adequately prepared, to be vigilant while seeking not to become crazed. I have a few teeny weeny little things that *normal* people wouldn't think twice about. On my legs for the most part, I think. I have "dermatologist" on a list, to get to once past Paul's orthopedist, cardiologist, urologist, internist and maybe neurologist. We have twin endocrinologist appts 7/18. Derma guy will have to wait. Supposed to go to Calif late July for littlest grandson's 1st Bday. Taking one day at a time, what w/Paul's issues and all. Guess you all know about taking ONE DAY AT A TIME. Too overwhelming to look too far ahead. The One Day Plan works wonderfully. But can't give my daughter any promises, which she totally understands. Pamela was supposed to come back to Boca w/us and 2 little guys, leaving Tom to his conference to join us when done. Now, I can't say just yet. Being a "planner" by nature has to be shelved for the moment.

Flori, good luck 7/3! Will think of you with

smiley face, which is a trick you taught me. Love it!

Habit forming! Just drew a blank on your name (w/the pimple and the stiff neck and the great sense of humor and...) Afraid to click elsewhere and lose this post. Can't seem to COPY it, so will have to think of you and your pretty face and blond hair and check after submitting. I apologize. I love all my sweet Soul Sisters who all get it!! Every one of you. This site is like HOME. Sending loving energy to all... ANDI Seeking to be *normal* when nothing else is, is quite the daunting challenge, eh?

Andrea Barnett Budin · 06-29-2007, 12:53 PM

I ACTUALLY WAS THINKING "s" AND EVEN SUSAN, but was scared of being wrong.

ANDI BB

Andrea Barnett Budin · 06-29-2007, 12:58 PM

Precisely correct. And as I agreed to allow Joe the tech to hit the bend in the elbow, KNOWING he would soon know what I already know, I had a momentary pang of anger w/myself for causing myself pain to prove I was right. I just was so full of POSITIVE ENERGY, I was too weak to argue, which makes absolutely NO sense. Ann the 30 yr veteran nurse ooohhhhed and ohnoed a lot, but I kept urging her on. MAYBE I taught them something -- for the next person who knows their own body!

WITH LOVE AND COMPLETE COMMISSERATION in this semi-minor plight of finding a good vein (compared to all the rest, that is...), ANDI

hutchibk · 06-29-2007, 08:19 PM

Just having a good day and wanted to share a few smiles!

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

dhealey · 09-20-2007, 03:35 PM

Mary, There is no back to norm the way you used to be before cancer. You now have to find a new norm. I got very depressed about a month ago because I too will be nearing the end of my treatment in Janurary. I feel nervous about the cancer coming back. People at work act like I am not sick either, I guess because I continued to work and do everything like I did before. This is not always good as I get very tired. The only one who understands is my husband. I can no longer tolerate petty little problems or trivial things at work or home. I have learned though to appreciate everyday and treat it like it may be my last. Live in the moment. It has taken me awhile to do this. I think when you are going through treatment it is easy the sail through it without really thinking about having the cancer because everyone is concerned about getting you better and you are so busy with doctor appointments and treatments. The next phase is the hard one learning to move on. I am still working on that one. One thing I have learned is don't be to hard on your self and learn how to say no to things that aren't pleasing to you. Best of luck!

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

BearMan52 · 09-20-2007, 06:23 PM

You all have just cracked me up with the smileys! Thank you...needed that...my wife is having a rough time on Xeloda/Tykerb...and not a lot of evidence that it's working. This is after a year of mets diagnosis and txs: Taxotere/Carbo/Herep; Navelbine/Hercep, now Xeloda/Tykerb...with Zometa throughout. Thanks too for the inspiration.
Barry
Care giver husband

tousled1 · 09-20-2007, 09:17 PM

Mary,

It is quite normal to feel the way you do. While you're going through your treatments you are kept so busy with doctor appointments, tests, etc that you really don't have much time to think about anything except fighting this disease. Now that you are coming to the end of treatment you have more time on your hands to think. Your "normal" after completion of your treatment will not be what your "normal" was before the beginning of your journey. I have found that I don't sweat the small stuff anymore, have little patience for some people, and just enjoy each day for the little things. Don't despair. If you feel you need medication to help you through this, don't hesitate to ask your doctor for either an antidepressant or an anti anxiety drug. I took antidepressants for 4 years after my son passed away from leukemia. I stopped taking them the year before I was diagnosed with breast cancer. I have not gone back to them but I do take an anti anxiety drug - Ativan which really helps. I also have a terrible time with sleeping -- started when I was on Herceptin only. I take Ambien CR for that. You can not live your life worry about cancer each and every day. There is so much in life to appreciate and it's up to you to find just what is going to make you happy now. If it means developing new friends and dropping old ones, or taking up a new hobby. the best advice I can give you is to make sure you do something nice just for yourself at least once a week. Hang in there it does get better!

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!

OzzieSue · 09-22-2007, 04:19 PM

Having read all these posts it has inspired me to fight on to the next step of my journey. I received the email below today and thought it appropriate for this thread

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably coifed and shaved perfectly, even though he is legally blind, moved to a nursing home today. His wife of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready. As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

"I love it," he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

"Mr. Jones, you haven't seen the room; just wait." "That doesn't have anything to do with it," he replied. "Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged. It's how I arrange my mind. I already decided to love it."
"It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do."

"Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away, just for this time in my life."

Old age is like a bank account. You withdraw from what you've put in."

So, my advice to you would be to deposit a lot of happiness in the bank account of memories! Thank you for your part in filling my memory bank. I am still depositing."
Remember the five simple rules to be happy:

1. Free your heart from hatred.
2. Free your mind from worries.
3. Live! simply .
4. Give more.
5. Expect less.

hutchibk · 09-22-2007, 10:20 PM

I LOVE that OzzieSue! Thanks for posting! May I share it with others.

Sherryg683 · 09-24-2007, 05:33 AM

OK, but this may sound bad but I eat what I want. I had a brownie for breakfast this morning, that means I won't have much of a lunch. I do this more for keeping the weight down than worrying about feeding the cancer. In my heart, I really don't think that what you eat or don't causes cancer. There are too many vegeterians, neutrionalists, etc..who have come down with cancer. Many people with almost zero fat content on their body who never ate sugar. I think cancer is genetic, mostly and bad luck the other half. I am not going to worry myself to death over every thing I put into my body. That's just not living. I don't eat a lot of fats but I never had because of the weight thing. I do take tumeric, grape seed and green tea extract consistantly. I have been NED almost 2 years now and am too supersitious to stop what I have been doing, including having that occaisional donut for breakfast and reeses peanut butter cup. Life's too short to do without the good things completely. I'd hate to have my dying wishes be "man I wish I would have had that last piece of cake"...sherryg

Sherryg683 · 09-24-2007, 05:35 AM

OK, but this may sound bad but I eat what I want. I had a brownie for breakfast this morning, that means I won't have much of a lunch. I do this more for keeping the weight down than worrying about feeding the cancer. In my heart, I really don't think that what you eat or don't causes cancer. There are too many vegeterians, neutrionalists, etc..who have come down with cancer. Many people with almost zero fat content on their body who never ate sugar. I think cancer is genetic, mostly and bad luck the other half. I am not going to worry myself to death over every thing I put into my body. That's just not living. I don't eat a lot of fats but I never had because of the weight thing. I do take tumeric, grape seed and green tea extract consistantly. I have been NED almost 2 years now and am too supersitious to stop what I have been doing, including having that occaisional donut for breakfast and reeses peanut butter cup. Life's too short to do without the good things completely. I'd hate to have my dying wishes be "man I wish I would have had that last piece of cake"...sherryg

tousled1 · 09-24-2007, 07:27 AM

Sherry,

I coiuldn't agree with you more! I also eat what I want, when I want. I do try and maintain a healthy diet but believe me I'm not fanatical about it. The way I look at it I'm now Stage IV and I can do whatever I want. A few sweets here and there are not going to upset the apple cart.