"Surviving Survival" - Four Years Since Diagnosis

mcbeck · June 2007

My "journey into the unknown" began with the diagnosis 4 years ago this month and seems to have no end. The treatment I received that consisted of a lumpectomy followed by chemotherapy, then radiation was completed in March 2004. I am on Tamoxifin and will be for 2 more years.

I would've thought by now my life would be returning to normal. It hasn't.

I still have memory and attention deficit problems on a daily basis, hot flashes, pain in my left boob and arm, low back pain and fatigue.

I have been diagnosed as depressed and anxious with extreme mood swings so I'm on 3 different meds. They do help.

I have been to a neurologist who sees nothing wrong (chemo-brain) but has me returning every 6 months.

I am currently going to a Pain Management Doctor every 2 months.

Of course there are the bi-annual visits to the Breast Surgeon and Radiologist as well as the quarterly visits to the Oncologist.

Oh, theres also the osteoporosis and I have to take Boniva for the rest of my life.

All of this is trivial compared to (inner) loneliness of the disease.

Most everyone thinks you should be back to normal (or they don't even know you had cancer) so they don't understand. I am so tired of people saying it's because I'm getting older! I know my body (and brain) better than anybody and it is not old age.

I just turned 48 and I am not old. I do not feel old on the inside. I am usually a jokester and love meeting and talking to new people. I hold a high-pressure, high-energy level management job and work 45 - 50 hours/week.

Every day I'm reminded of how lucky I am to be a survivor and I am not discounting this by any means. I still have my breast and although I've had scares, everything is good.

Yet, there are no words to describe what it feels like to survive survival - even several years after treatment has ended.

Can anybody out there relate to what I am saying?

Jackie

renee4 · June 2007

I definitely hear ya, Mrs. Beck. I am also 4 years plus a few months out from lumpectomy, chemo, rads, and now tamoxifen. I was also expecting to return to normal before I started treatment. Well it has turned out to be a very different normal that I have had to adjust to.

Between menopause and other medical issues (i was diagnosed with vocal cord paralysis a few months ago-major scare)my health is much poorer now than before I was diagosed, and I am only 46 years old. That has been a major loss for me. But I am usually grateful to be alive, not always. Sometimes I still get really angry.

I would be lying if I said I was glad I got cancer. I would give anything to go back to where I was before. Yet there are moments where my happiness and joy are far greater than they would have been before cancer.

I guess for I me I feel both blessed and cursed. Maybe we can never return to what we were before. And I think too that only people who have had cancer really can understand our situation. So I feel very blessed to have this community to turn to for support.

Take care of yourself.
Renee

trumpkin46 · June 2007

Hi Jackie,
You might find it helpful to read the thread "I can't get my act together and I don't know why". There were some very interesting comments on the 'post traumatic stress disorder' aspects of survival. I am two years out and wondering why I can't get MY act together...I had a major scare (doctor looking for a tumour in my eye socket - turned out to be nothing major, but I was TERRIFIED)two weeks ago, and went through all the old emotions again. And my poor husband!

I am 61, a nurse - worked in ICU until this happened - now will probably never go back. I feel as though there have been many losses in this whole journey, even while I feel blessed to have survived. All these conflicting emotions - I can't get my head around them...

My husband is 'over it' and ready to move on, and I am not there yet.

Is there any one at your cancer agency (I'm thinking social worker or psychologist) you could run this through with? I've been meeting with the medical social worker at the Cancer Clinic here in Calgary, and it's been very useful. I can tell her just what I am thinking, without having to worry about hurting anyone's feelings. She's been a great sounding board.

Every good wish - let us know how you are going...
Alice

mcbeck · June 2007

Alice,

Thank you for the reference to the posting. WOW - many,many of us feel the same way.

I did notice that most of those who posted had finished treatment between 0-2 years. It should be getting better (according to what I read) by now, shouldn't it? It's been four years - I just want to put this behind me as much as possible.

Jackie

Sachi · June 2007

Hi Jackie, I remember you from '03. I joined the boards in March of '03..... and you came along a little later. I still find that I need my anti anxiety meds. Even though its been 4 years. Of course, my daughter was diagnosed with melanoma the year after me, and now my poor dog is in the "hospital " because she has a small intestine cancer. It seems there's always something.

I'm also on Femara and I read somewhere (maybe on these boards) that that can increase anxiety. Are you on an AI? Maybe that's adding to your depression.

Mostly, though, I must admit, I'm feeling and doing fine. Sometimes I even forget that i had cancer!

Take care,

Barb

Fitztwins · June 2007

I am 42. Dx at 40 (just turned). I was very driven and multi-tasker. It was nothing for me to have 4 activities going on at once. I can't do that anymore. I get tired really fast.

I find that I let things go more then I did. I just don't have the energy. I care, but no energy.

I also mourn that every ache and pain and spot scares the crap out of me. I lost my innocence with my health. I thought if I exercised and ate right I would be fine.

Janis

wallan · June 2007

I too have issues 3 years out. I get aches and pains and fatigue and chemo-brain. I cry easier.

I've noticed that I am more anxious about recurrance (if this is possible!) now than I was 2 years ago. I guess I figure that it could rear its ugly head any time now. This is my nemesis.

I just wish I didn't have to even consider recurrance. This is the hardest.

Wendy A

kats · June 2007

Jackie OMG so good to see you back on the board. We were going through our chemo and radiation journey at the same time. I've thought about you over the past few years and have wondered how you were doing.

Mary

gsg · June 2007

Hi, Jackie. You captured what I'm feeling perfectly. My diagnosis and treatment were just last year, and feeling the way I do, frankly, I won't be surprised if I'm still in the same place 2 to 3 years from now. Maybe we need a forum entitled "NOT moving beyond cancer."

I was actually in a better frame of mind last year. My husband said to me yesterday, maybe it's because you're no longer the center of everyone's attention. If only it were that simple. This kind of attention, we could all do without. It's hard to describe the empty feeling inside and you've done it beautifully.

take care-
patrice

trumpkin46 · June 2007

As I understand PTSD, it goes on and on and on.....
And as you come up to the magic '5' years, I wonder if anxiety gets more....

Hoping to get there. I saw another eye specialist today and they want to CT my head and biopsy the tissue in my eye socket. Am trying not to panic....

Alice

Pauline3837 · June 2007

I'm 4 years out of treatment....lumpectomy, chemo, rads and have been on Arimidex. I'm 56 now.....my head says I'm 40 something, but my body sometimes feels like 80. I've found strength training helps with the bone aches (believe it or not), but weight loss is so difficult. I've develped fat where I never had fat before which doesn't help my lack of sexual desire.
My family and friends have all moved on as far as cancer is concerned. I'm trying very hard to "learn" to live as a survivor, but no matter how hard I try, cancer is never very far from my thoughts.
I've tried to stay away from these boards thinking they might be aiding my preoccupation with this disease, but the truth is, these boards so represent who we are today....Only another cyber sister (or brother) can truly relate to some of our concerns or triumphs.
"May we all find hope in our hearts, love in our lives and peace in our souls" (a quote from another cyber sister that I have adopted as my creed)

mcbeck · June 2007

Thank you all for your replies. I forgot how nice it is here.

I, too, have stayed away from these boards like Pauline. (And the fat thing is haunting me as well). I didn't want to be part of anything that reminded me of cancer. Of course we all know that is like living without trying to breathe. Can't be done!

So, yes, Mary (Katz) it is me - still confounded by this stupid disease. It is so good to hear from you! You were there for me many times in the "old days". Still in Chicago? Let's not talk about the Bears, okay!

Patrice, I read your posting on the same topic and you and I have a lot in common. Especially the husband part. His intentions are to clean one room, so he moves everything to another room and then never finishes! Ta Da! Two messy rooms.

As far as missing the people who treated you - well of course we do - they knew our cancer better than anyone and at certain times, we saw them almost every day.

Wendy, I used to get the crying spells on a regular basis and I had no control over them so then I'd get mad. The Lexapro and Lamictal that I now take really helped with this. I'm NOT Bi-Polar; I have severe mood swings according to my Doc.

Janis, you sure know how I feel. I used to be an "expert" multi-tasker. Now it's hard to concentrate and focus on one thing. It's really embarrassing when I forget what I'm talking about in the middle of a sentence. Try that and a hot flash in a staff meeting and now you're cooking!

Barb, I remember you too. You are another friend that was there for me. I'm glad you are doing well, but I'm sorry about your daughter and your dog (I'll say a prayer). You are an inspiration - to know that despite the curve balls thrown at you, you still feel good. Thanks for that!

Alice, I've tried counseling, but I don't think it did much good. I think I get more from these boards! I'm so sorry about your eye - I'll keep you in my prayers. It must be an awful thing to have to go through.

Renee, I think I remember you from before too. Oceangirl rings a bell. You got it right about being both blessed and cursed - that's exactly what it's like. And nobody understands unless they've been there.

This discussion board is here because WE NEED it. Whether we contribute or just read, you guys understand and that is a therapy you cannot get anywhere else.

Thanks to Breastcancer.org for making this possible.

Hugs to everyone.

Jackie

Anonymous · June 2007

Quote:

"May we all find hope in our hearts, love in our lives and peace in our souls" (a quote from another cyber sister that I have adopted as my creed)

Pauline, that quote made me cry. I suppose I'm just having hard time right now.

Will we ever get over worrying? I think I'm having one of those days (for the past few days).
Shirley

sassy · June 2007

Jackie,
another "oldtimer" here. I was diagnosed in 2002, finished chemo, rads, tamoxifen and still on arimidex. I am down to yearly visits with my onc, now have osteopenia and have "canceritis" almost every day. I am always waiting for the other shoe to drop while everybody else seemed to have moved on. I work with a few women who had been diagnosed after me and they seem to be okay but I am still worried about reoccurance and "the beast" is always on my mind, daily. Will it ever end?

karen1956 · June 2007

Jackie - i think you expressed what many of us feel. I am only 16 months since diagnosis. It is so true - people think that once we are done "active" treatments we should just be find and dandy. This past fall, my boss even said to me something along the lines that to look at me you can't telll that I had cancer (my hair was very short at the time). Well I can tell I had cancer. I am not the person I was before. side effects are a constant reminder of all I have been through. I am only 51 and do hope one day that I can move on. Thank you so much for putting into words what I feel inside. Karen in Denver

traceylmader · June 2007

Wow, You guys have described most of what I still feel. I was dx 1/2002. Bilateral idc. 6 months of chemo, 33 rads, 9 herceptin/navalbine, hysterectomy, 2.5 years of tamoxifen then switched to femara, still have another year.

I can't lose weight, the hot flashes are about to kill me and don't even get me started on the night sweats and I am only 40.

Every time my little toe hurts, I am convinced that I have a cancer reoccurance.

It seems that the further out I get the more paranoid I am. My husband is about to strangle me and I try to hide all of this from my 9 year old. WHEW!! I feel better!!

mcbeck · June 2007

Thanks for sharing, Tracey and Karen. There's a lot to be said about "misery loves company" - so does outright FEAR.

Karen - my boss said to me a few months ago "You and all your Doctor appointments"! Needless to say, after eight years, I changed jobs.

Tracey, glad this posting helped - "feeling better" is what we all strive for. It must really be hard with a 9-year old and a husband who, as much as he wants, cannot relate to your fears.

Shirley - I agree that Pauline's quote is a very strong message. I've had many "crappy" attitude days in a row - It is what it is, so don't think twice about it. It's Ok.

Sassy - I remember you from the "old days". I like your term "canceritis".

I don't think much of the "R" word. It has become such a part of my every-day life - like breathing (which I don't think about much until my chest x-rays). I think I've gotten used to it, because I've had so many scares that turned out to be something else.

A few years back, I never expected to get cancer, and yet, here I am.

I guess if the nasty poison shows up again I'll deal with the "treatment" aspect like I did the first time. Also - the damn "R" word would be invading my thoughts in an entirely different manner. Kind of like the breathing thing turning into a gasp for every breath.

I think I would dread the "survival" more than anything. Now that I have experienced the worst side-effect of this disease, the indescribable loneliness, I don't want to go through it (still) again.

Make sense?

I'm thinking about writing a book (in case you hadn't noticed, I like to write). But the energy it will take keeps me from starting.

Maybe someday.

Hugs,

Jackie

Anonymous · June 2007

Jackie, I think you should write a book. I bet everyone here would RUN out to buy (perhaps a few copies for friends and family too )

As far as putting forth the energy in writing "this" book, hey, take your time. However, I can evision that energy becoming stronger so that you could get the word out that "it's okay."

We are fortunate to have this board. There are many women (I'm sure) that have no one to talk to about our fears, fatique, etc. I know I don't. No one wants to hear about my fears and concerns. I certainly don't want to burden my children with them. No matter how much our family and friends love us they will never understand unless they have walked in our shoes.

Don't get me wrong. I try not to obsess over the "what ifs." However, if I'm a very "anxious" type person, so if there IS something going on with my body that I do not understand I'm in the "anxiety mode" big time.

So, Jackie, start writing the book. The worst than can happen IS that you won't finish it.
Shirley

mcbeck · June 2007

Thanks Shirley,

Believe it or not, I started about an hour after my posting. WOW! The energy I get from this website is something you cannot buy in the drug store!

You're right - why not share? And the worst scenario isn't a horrible thing so I decided to go for it.

I write poetry too and was even published by the International Library of Poetry. My poem is titled. "A Breast Cancer Survivors Poem". I wrote this shortly after my treatment began.

Hmmmm, you just gave me an idea for a chapter - You're statement "don't get me wrong" is something we have to say too often.

Surely (Shirley) you are an inspiration.

Thanks for the vote of confidence.

Hugs,

Jackie

lizzie12345 · June 2007

It has been 3 years for me. Life is not the same. No matter what I do "cancer" is always on my mind. My depression is severe. I do feel alone. My family refuses to talk about it and everyone thinks I should just feel lucky. I guess I am lucky to be alive. My best friend died from breast cancer. I don't usually feel lucky. I hate what cancer has done to me. I can handle the physical part of it. (I had a double masectomy) its the emotional part I struggle with. To top it off I was so depressed I resigned from my government job of 12 years. Now I am unemployed and scared I won't find another job. I am 49 years old but there are days I feel 79. I want to be happy but I can't seem to get there. Any suggesstions?

Anonymous · June 2007

Quote:

Surely (Shirley) you are an inspiration.

Thanks for the vote of confidence.

Hugs,

Jackie

Aww, gee, thanks. I need to inspire myself!

When you get finished with that book be sure to let us know.
Shirley

Anonymous · June 2007

Quote:

To top it off I was so depressed I resigned from my government job of 12 years. Now I am unemployed and scared I won't find another job. I am 49 years old but there are days I feel 79. I want to be happy but I can't seem to get there. Any suggesstions?

cld, this is often so much a part of this disease. The suggestion I have for you is see a doctor about something for your depression. None of us want to take anything, but sometimes it's what we must do.

I took antidepressants for some years. I had been off of them for a few years. THEN, breast cancer decided she wanted to be my friend. At some point during my treatment I thought I was going nuts. I spoke with my oncologist about it. I so hated to go back on antidepressants. But, I did. And I'm still on a small dose.

Come back and let us know how you are doing. We are hear to listen, talk, cry with you, whatever you need.

Hugs,
Shirley

LizFL · June 2007

I am a little over 2 years out...diagnosed in April, 2005...stage IIIC, borderline IV, grade 3...had mastectomy, chemo, rads and am now on Arimidex. At the same time I was dealing with a difficult family situation involving my son. Broke my hand before starting chemo (careless while running to the car to get from one doctor's office to another on time). Have a bad back which went out on me and was seriously affected by climbing up and down off the rad table to the point where I needed a cane to walk. Got burned pretty badly during rads...ended up in ER. Was all set for back surgery, when thankfully, got better after finishing rads. The day after my last boost of radiation my chest swelled and I was sent for lymphedema therapy. Prior to the radiation, I had no problem with my arm...motion, movement or swelling. Somewhere during that time I had several dental problems and two skin cancers had to be removed and a biopsy on my other breast because my mammo was suspicious. I was treated as a malingerer at work (even though I worked through treatment and still have lots of unused sick time left). Finally got my port out last week and my boss made some comment about going to the doctor for follow ups or "whatever it is that I go for" (does she think it is for fun?). I am 60 and if I mention that I'm tired or anything I'm told it is my age. Or better yet...others can complain all they want about a hangnail...but I'm supposed to be so lucky to be alive I shouldn't complain about anything. And I thought I would puke if one more person told me how brave and strong I was. I spoke with a counselor at the cancer center and then saw a therapist...I am on anti-depressants and don't care if I have to stay on them forever.

There are days I almost forget I have cancer...but then I look at my compression sleeve and my missing boob and think about the various side effects of everything and get that fearful feeling when I get any different ache, pain or whatever.

I am very glad to be alive and NED and I do enjoy a lot about my life....but no, it will never be the same. I know I am a lot more fortunate than some of the women on these boards and I don't forget that. That doesn't mean it can't be good, but it won't be the way it was before. I am realistic about my chances of reaching an old age and I can deal with it (and hope I'm on the good side of the statistics). I do find I am very thankful to the people who helped me through everything...and relationships are more important to me now.

I am a positive minded and optimistic person, but do get very frustrated that I don't have the energy to do all the things I want. So I prioritize and try to make the things I enjoy stay on top of the list.

That felt good to vent!

Liz

Shirlann · June 2007

Hi dear sisters, it is definitely Post Traumatic Stress Syndrome. There is no way you can go through a year of all we go through, and some gals more, without permanent damage to your confidence and carefreeness.

It is like losing a relative you treasure, you go on, but it is never, ever quite the same.

Drugs help a lot, but nothing stops that silly "pain" wherever it might be, from being a met, and always on Friday afternoon. Dang it.

Thank God we have each other. It is a lonely business. I feel like I am in Alchoholics Anonymous, don't talk to me if you didn't have breast cancer!

So, on we go, life is still sweet at times, but often the bright is off the day.

Gentle hugs, Shirlann

mcbeck · June 2007

cdl,

I'm glad you posted. I, too, get sick of the "you should be lucky to be alive" attitude everyone gives me now. I KNOW I'm lucky, I HAD the cancer! People can't possibly think we are ungrateful, can they?

We are allowed to express our feelings know matter what they are just like anybody else that has problems (like the hangnail thing!)

When I hear people complain about stupid, trivial things I know they have no clue what it's like to be thankful. So, don't tell me I'm not!

I guess I get a little carried away with the explanation marks!!!!

I have been fighting depression for a long time. I take 3 different meds to combat this, anxiety and sleeplessness. You are not alone - it sucks to feel like this.

A job (the right one) will come along so hang in there.

Keep coming back - we're all "hear" for you and your feelings 24 hours a day.

Liz, you are right that this is a great place to vent. And I dont think any of us discount what our sisters have been through. Its been an awful journey no matter who we are and no matter how we handle it. The end of the road is either defeat or survival. Were all doing the latter the best we know how.

I'm optimistic and upbeat too, and have been told by my peers that I'm always smiling and happy. Doesn't sound like somebody alone, but we are. Thats we have these boards to share the loneliness with our sisters.

Hey Shirley - I'm on Chapter 4!!!

Hugs,

Jackie

kyle · June 2007

jackie- i remember you. yes i totally undertsand. i will be 4 yrs out next month. altho i live my life relatively happily- i have a 6 yr old son and a great husband- the "r" idea never leaves my mind for more than an hr. it was better 2 yrs ago. i do wonder if it is the 5 yrs b.s. idea they feed us.and i am so tired of people saying i am an "inspiration" -i don't get that. why? because i get out of bed in the morn. i am 46, and run but feel 75 by noon on most days. by the way what meds do you take? my dr will only give me a two week supply of anti-anxiety pills the two weeks prior to my mamm and onc (which i only see once a yr). i really want it everyday. i just wanted to say i also am having a hard time moving beyond. can someone truly expain the 5 yr thing to me. kyle

mcbeck · June 2007

Hi Kyle,

Thanks for posting - I remember you too! I didn't realize how many of us are still coming here.

I can't imagine how hard it must be with a six year old. Even a supportive husband can't replace mommy. You run and still are tired by noon? I'm trying to exercise but it's not easy - I don't know how you do it.

A little over a year ago, I needed to see a head doctor to see if I was even on the right anti-depressant (and to see if he could see inside my foggy brain). The Effexor prescribed by the Onc wasn't cutting it.

After trying a couple of things, I ended up on Lexapro. It helps with the depression, but my mood swings and ability to go from mild mannered Jackie to the wicked witch from the Midwest still remained. I could cry at the drop of a pin without any ability to stop or blow up in anger.

The Doc then put me on Lamictal. Everything says its for Bi-Polar treatment, but he swears that is not what I have. I'm severely depressed and anxious so it's like being a yo-yo.

He also prescribed Ambien CR 12.5 mg to help with my sleep. Some nights I lie in bed exhausted, but I can't shut my brain down. Other times I'd wake up in the middle of the night, unable to fall back asleep.

I'm sleeping better and my mood swings seem to be under control for the most part. My daughter told me she noticed a big difference - I'm not so negative! I never thought I was??

You make a good point about the five-year mark. I'll bet that's what has a lot of us talking about our fears. I can think of a lot of reasons why this scares the crap out of most of us.

I can't explain it; I can only say I'm experiencing it.

Shirlann - thanks for your input. I also think it's bigger than Post Traumatic Stress Syndrome. I believe this is just a piece of the complex, emotional feelings we are experiencing. I also believe depression, anxiety, chemopause and chemobrain are part of the mix too. I like the expression "canceritis" that was used earlier in this post.

You're reference to AA is great! We really do need each other and we don't want to talk to anyone else. Were not thrilled to be in the group, but were happy were not alone.

Your last sentence says it all, thank you for sharing.

Hugs to you both,

Jackie

Anonymous · June 2007

Okay, I sit here again in tears reading these posts. I hate that anyone has had to go through this, but aren't we glad we are not alone, and have each other for support. We are lucky to have that gentle hand to hold, or to pat us on the back even though it's through cyber space.

Jackie, you go girl! I'll be the first one to buy it.
Shirley

mcbeck · June 2007

Shirley,

Every one of your posts just inspires me more. I was up until 2:00 A.M. working on the book.

I'm working on it now and jumping between the discussion boards and the manuscript. My husband is very proud of me for finally doing this. I've been talking about writing a book for years but never could come up with the right topic. I guess I can thank Cancer for something else!

I'm on Chapter 6!!! Whoopee!!!

Like I said earlier, "Shirlier" you are an inspiration.

Keep posting.

Hugs (I'm wiping away your tears with cyber tissues)

Jackie

mcbeck · June 2007

Me again!

A great friend and neighbor just e-mailed me a great statement. I had to share it - it fits!

Enjoy:

I don't care if you lick windows,
take the special bus
or occasionally PEE yourself...
You hang in there, sunshine,
you're frigging special.

Sounds so much better than all the other things we hear!

Hugs,

Jackie

trumpkin46 · June 2007

Jackie,
I posted this on another thread, but wonder if this technique might help in those 'awake in the night, looking at the ceiling' times.

"I found nights the hardest. I would wake up and stare at the ceiling and my brain would go into what my doctor called 'unhelpful loops' where I tried to think through all the possibilities. A wise friend said 'guilt is how we try to control the past, and anxiety is how we try to control the future' and I was pretty anxious.

I finally bought an IPOD and loaded on my favorite music and listened to it during those wakeful nights. I love Mozart and gregorian chant, but you could use anything soothing. And I would get into the music and go back to sleep. "

I'm very excited to hear about your book. Good on YOU!

Going for CT of my head/eye tomorrow. Will let you all know how it turns out.

Alice

"Surviving Survival" - Four Years Since Diagnosis

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