Bitch flag flying, 6 mo checkup, scared, PTSD now

cat08

Whew, this is a bitch-worthy thread that, well, I am ready for finally. I have tried so hard to be even-keeled, considerate, understanding, and struggling, but I really need to let some bitch-a-tude out too because I have tried to find philosophical resolution to this crazy-ass disease. I have tried to frame it in something that is reasonable, but it is not, and even worse, trying to not express this side, well, how can one not?

No matter what anyone has said to me, the truth is, cancer sucks. I can find the good in what has happened some times too, but the reality is, that is how I feel. 

I am angry these days. What really pisses me off is that besides missing a breast, going through 4 surgeries, drinking barium, having my nipple injected with radioactive dye, treatments, byproducts of drugs, blah, blah... I worked full-time through it and tried to disguise this because, honestly, it is not exactly the thing you want employer to know for many reasons. As I am single, no one picked up the slack. I made all the appointments. I managed everything through it all. My friends were so far away in another city just starting their families that, honestly, I was alone most of the time. I was alone when the doctor said, "You have cancer." I was depedent on the kindness of strangers I suppose, but who wants to reach out to strangers at such times? I had just relocated to a new city to do a PhD, of which I had to drop out of, which was why everyone was so far away. I am now 6 months out of  the last surgery (of which they were crazy to go against my doctor's request for a mastectomy because she retired right after the diagnosis and they just kept digging around to save my breast attempts and then finally realized they would not find clean margins and did the mastectomy), I go in for a scan tomorrow and I am terrified. It is so humbling. Now, the cherry, the cherry on top of the cake is that after the surgeries, the treatment settled, the living with "Hey, it might recur and then you will really be visiting death again because the radiation will make it even more aggressive," I have PTSD from all that happened in those operating rooms I guess, or just the sheer horrific ride of cancer, or being told you have it, or somewhere along the line. Before this, I could handle a lot. I lived in NYC for 16 years and even saw 9/11, so, reality is, I can handle a lot. But, not this. Before this I was patient, blew things off that were not ultimately too serious, now, on a dime, something will frustrate me, piss me off etc... and I will react or be edgy. Not anything extreme like you see in a movie, but just aggravated. I used to be able to read and write, now I mispell words, forget what day I have an appointment, cannot remember what I went to the grocery store for, forget the last paragraph I read, etc... And, last of all, you know, I had spiritual questions before this and during all of this and I find little comfort, quite honestly, in believing there is any answer because I know there is none as to "What can I do?" It is just as it is and it just keeps coming at you. It doesn't stop. I didn't see people smiling like angels when I was in the MD Anderson waiting rooms. No, women who were 10 year's out were still looking rather worried that THIS scan, or mammo, or check-up might be the one. This one might be the one where they tell you again: "Buckle up gal, we are going to take this ride into hell again."

This is a terrible disease and more than that, I wish someone would make a roadmap where they at least let you know some of the things that might hit you beyond the cancer, like the byproducts of the surgeries, the possible affects of the radiation that appear years later, the blood reports that show your organs are trying very hard to process all the crap they put in you, blah, blah, blah, blah. It is like a crappy magical mystery tour box that no one really wants opens up and surprise clowns jump up with scary faces. And, btw, being younger than 65 with this disease stinks. My doctors say things like, "You are so young. So young." And I think, "What does that mean really? That I will not find my tribe of other young women who are single who don't know how to pay their bills because they are the sole financial support in their lives. Who do not have time to go to support groups that meet in the mid afternoon because they work. Who now worry that they will never have children because the cancer took that from them? Is this what they mean when they say, You are so young?" BLUCK. Someone should fix this as the demographic with bc is changing so dramatically and trending to younger women who do care A LOT if they can date again, if they can have children. And could someone please change some of the brochures that say, "Grandma has breast cancer, and this is how you can help her." Could someone please mix it up with some younger women who are wearing suits who wonder whether they can keep their jobs. Single mothers who get this disease who wonder if they will be able to handle it all. Single women who wonder if they can date again, etc... BC survivors who suffer from PTSD after all the other things and did not even know that was possible outside of signing up for a tour of duty in Iraq. And, in the past, I might have entertained the idea of trying to help in some way fix some of the social problems that obviously go way beyond a surgery or a drug to cure cancer, or try to change the perception of bc in our culture, but, to be honest,  I find myself wanting to sleep after dinner most days now. 

 Ok, that is all for my bitch-a-tude. I know I will get stronger, but some times you really do need permission to be bitchy. It is not like this was my dream of what my life would be. 

hopeful34

Wow....someone feeling the same way I do today.  I am so sick of hearing people say "you're so courageous!"  I mean not that I don't appreciate it, but what other options do I have?  Keep my breasts and worry forever?  I am scared too.  I haven't even had my surgery yet, and all I can think about is I am 34 years old, and while I have a 14 year old son, I just got re-married 3 years ago and my husband has no children....and he wants them so bad.  We were trying before all this and now I am left with the good possibility of not being able to have a child for him.  I am afraid this cancer is ruining his life just as much as mine.  I too have been in school the last three years and was one year away from completing my Bachelors in nursing only to have to drop out.  Now, I fear that I will never make enough money and that no one will want to hire me even when I do finally graduate because they won't want to have to deal with the risk of this crap coming back.  I too worry that I am going to now live in fear forever.  I am generally a very funny, outgoing person who rarely gets mad, but lately I can barely tolerate most people.  Things they say just bother me and I don't want to leave my house because I am just depressed and tired.  I am hoping after surgery I might relax a little, but I fear that every pain is now going to trigger bad thoughts and I am now a hypochondriac.  I am sorry feel so bad and I am sorry if instead of encouraging you  I join your rant, but I guess I just need you and others to know that you are not alone in your "new found personality/mood swings"  I can only hope that while enduring all of this bad stuff that we will grow from it somehow and we can conquer this depression.  Good luck to you cat08 and I hope we talk again when we're both in happier moods. 

hopeful34

Wow....someone feeling the same way I do today.  I am so sick of hearing people say "you're so courageous!"  I mean not that I don't appreciate it, but what other options do I have?  Keep my breasts and worry forever?  I am scared too.  I haven't even had my surgery yet, and all I can think about is I am 34 years old, and while I have a 14 year old son, I just got re-married 3 years ago and my husband has no children....and he wants them so bad.  We were trying before all this and now I am left with the good possibility of not being able to have a child for him.  I am afraid this cancer is ruining his life just as much as mine.  I too have been in school the last three years and was one year away from completing my Bachelors in nursing only to have to drop out.  Now, I fear that I will never make enough money and that no one will want to hire me even when I do finally graduate because they won't want to have to deal with the risk of this crap coming back.  I too worry that I am going to now live in fear forever.  I am generally a very funny, outgoing person who rarely gets mad, but lately I can barely tolerate most people.  Things they say just bother me and I don't want to leave my house because I am just depressed and tired.  I am hoping after surgery I might relax a little, but I fear that every pain is now going to trigger bad thoughts and I am now a hypochondriac.  I am sorry feel so bad and I am sorry if instead of encouraging you  I join your rant, but I guess I just need you and others to know that you are not alone in your "new found personality/mood swings"  I can only hope that while enduring all of this bad stuff that we will grow from it somehow and we can conquer this depression.  Good luck to you cat08 and I hope we talk again when we're both in happier moods. 

redskies

"It was not like this was my dream of what my life would be."

Cat, your last sentence sums it up- this is what cancer steals from us.  I totally relate and I bet every woman on this board agrees.  It does not only steal our dreams, it steals the mundane as well!  It sucks big time.  The only thing we can do is find some way to integrate the experience into what is left of our old lives, and find a new one that has meaning and beauty.

There are no road maps I have found, which also sucks, best I can do is search for one here.  I was diagnosed with initial stage 4 ILC, and found none of the supports initially offered helpful.  I don't think they would have been much help even if I had been diagnosed at a lower stage.

I too had bad experiences with the first place I went; when I finally broke down and told my onco-psychologist about it in detail he referred to it as a "traumatic experience," and that is exactly what it was.  Just being diagnosed with cancer is bad enough, but to go through bad treatment just intensifies it... and so do all of those other things you have been dealing with alone.

I am so sorry you have not had someone to stand by your side, I at least have been (very) lucky to have my boyfriend by my side for every appointment.  Our relationship has ultimately been strengthened by this.  People who can't handle this and support you are not people you want in your life to begin with.  Not that it is easy for the people in our lives, they are stressed by it as well and have to work their way through, but true friends and lovers (and future friends and lovers) are always with you through thick and thin.

Try to get in to talk with someone who specializes in therapy for persons with cancer- does MD Anderson have onco-psychologists you can see?  They should- if they don't, stir things up and ask why not, if you want to.  I do not even have to pay for mine, it is offered free of charge where I go now.  We meet individually, as often as I feel the need to.

You might also want to see a psychiatrist through them as well, as a psychologist can't prescribe meds.  Your onc might, but I think it's better to see a specialist in this.  All of my care- onc, psychologist, psychiatrist, all scans and blood work, etc. is coordinated, in one location, and they do actually work as a team... many places say they do (including the first place I went) but it is hard to put into practice and many places fail miserably at it (for example, the first place I went!)

I have experienced the same things you wrote about:

"Before, I was patient, blew things off that were not ultimately too serious, now, on a dime, something will frustrate me, piss me off etc... and I will react. I used to be able to read and write, now I mispell sentences, forget what day I have an appointment, cannot remember what I went to the grocery store for, forget the last paragraph I read, etc..."

Some of it was due to stress, some due to the anxiety meds I was taking, some due the cancer meds we take, the effects of surgery/anesthesia... and who knows what else.  Some is due to all of the emotions we go through when we are suddenly snatched from our old lives and tossed into this nightmare that is cancer.  Working with my onco-psychologist and my psychiatrist, we've come a long way in sorting all of these things out, and I am feeling much better.

We all need to be treated as whole persons by our health care system, especially when it comes to cancer, but often we are not- this is one of the major failings of our health care system and our society from which it springs.  We talk and act as if our minds and our bodies are somehow separate, which is utterly laughable (except when it hurts so bad.)

As for those scans down the road and the "scanxiety" and "scan-itis" that comes with them, speaking with an onco-psychologist and getting anxiety meds to take while waiting for the test, and then the results, should help.  If you don't want to do meds, or can't speak with someone who specializes in working with people with cancer, look for a cognitive behavioral psychologist and ask about things like relaxation training, yoga, meditation, etc.  There are many ways to attack this.

Anger and depression are flip sides of the same coin.  After going into a black hole of depression, I was given anxiety meds while waiting for the antidepressant to start working.  Once I climbed out of that black hole the anger became dominant, so we increased the anti-depressant dose and then weaned me off the anti-anxiety meds.  Now I just take a little klonopin before bed to keep it in my system, and then I can take more of it when anxiety hits.  A day or two before scans and Dr appointments anxiety is pretty predictable.

I also take ritalin for my memory/concentration and for chemo fatigue.  I still have problems when writing and reading I never had before similar to dyslexia:  typing "hear" when I mean "here," seeing letters reversed or inverted at first glance and thus misreading or not understanding what I see, finding myself clueless on how to spell a word.  Still a problem, but it has gotten much better with the ritalin... and I do laugh at times, some of my misreadings are hilarious!.  The ritalin has helped very much with the memory and word-finding problems... it got to be so bad I was breaking down into tears and sobbing.  Many women on here are taking meds to help with anxiety and/or depression... obviously we have a lot of reasons to be!

Best wishes to you and to all,

Lynne

cat08

Thank you brave women for articulating how scary, freaky, amazing, and profound this journey is!

 Now I feel so much better! You know, it is as though I still had a commercial playing in my head of how a woman should be during all of this, or that I could some how understand what might happen, but to no avail. 

 It is interesting, I wonder if others are experiencing dyslexia of a sort also. I was so happy to read that someone else was. I tend to also truncate words for no reason (e.g. beauti  and forget to write "ful"; hemoglob and do not write "in") and I do not even realize this even going over it again. It is strange. I am also writing things like "there" when I mean "their"; "hear" when I mean "here." It is scary to lose your vocabulary, at least it really was for me. I wonder if I will ever get it back again or if I will need to work differently and reread everything a couple times before I finish it for other people to read. 

I also found that I lost impulse control some times in saying things. Meaning, I would cycle, or say the same thing over and over again and could not find the right words. That was weird. Elegance was no longer. 

About the fear of becoming hypocondriac. hah! exactly! I was so easy--going before this. I would hop on a plane and go anywhere, any time. This Christmas I stayed where I was without seeing family because I was actually afraid that if I got in a plane and flew home for the holidays it might some how release something (cortisol, etc...) into my body which would then promote the cancer to come back. And, honestly, I am some one who would not be considered wussy in the past.

I am just so relieved others are experiencing this. And the panic attacks, they are so weird. One day I was walking down the street and started to feel really dizzy as though I was going to pass out. At the time I did not associate it to anxiety induced by the whole experience, just that I was dizzy. Then it started to repeated itself. And I could find no reason for such things (ear ache, medication, nothing). Then after a year of surgeries, treatments, etc... it dawned on me that I was having anxiety attacks because it correlated with surgeries or when I was going to the hospital. Of course, if you tell an onc (surgical/medical) they scan your brain. Then when there is nothing to explain it, it just doesn't get recognized. I did not know that is was an anxiety attack as I had no experience in this. I thought it would be something like: Hey, I am feeling really anxious right now and my palms are sweating, etc.... 

About psycho oncologist. That is such an amazing field I never knew existed until you told me about it. I called one on Friday. And, nope, no doctors or hospitals recommended seeing such a person. I did not even know such a thing existed. It is really ineteresting to me, that in other fields they know, almost certainly that the brain is affected by trauma, stresses cause changes to how the brain functions, etc... I do hope it all comes together for the next generation. I really do. 

And this idea that the body and the mind are separate, it is ridiculous I so agree. My body certainly is an integral part of my consciousness in the world and with myself and in relation to others.

And that is why I wish so much for a more comprehensive roadmap. Do you really think it would not help? I found myself so woefully underinformed. If someone would have just said to me, "Because you are having multiple procedures and surgeries, if you experience any uneasy feelings we would like someone to visit your bedside, or did you know this existed?. Some of the symptoms that might seem like something else, but are definately worth noting are: x, y, z. Please let us know and we can talk about what might be happening." I had a picture in my mind that if I just got through it all for a moment I could put my life together. Or, worse, that I was cranky and needed information because I had so many questions that I should stay away from people as they might not understand, or medically had to deal with other things, or worse, no one knew the answer and I was the only one who was going through this after things. I was so shocked to find out that there was more and that other survivors experienced it too. And the weird part is, you hope there is not more, but I would be fine if I some how just knew there might be.

HOPEFUL

You are a beautiful person I can tell. I know exactly where you are at. Do you want me to tell you some hopeful things that I know, that are not exactly my bitch-flag? Email me and I will try to relay some things about the surgery, etc...

REDSKIES/Lynne

Thank you my dear. With stage 4 ILC, I am so sorry. I am so grateful some times to meet people who are struggling with that little sneaky, sneaky cancer.

Thank you both lovely women. It helped a lot to hear/here your input. And most of all, I am glad I am not the only one experiencing these things.

cat

lifegoeson

Thank you for this topic.  I feel the same way.  Cat08, I was diagnosed just about 2 weeks after you were, and here we both are, over a year later, with anxiety and depression.  It is 2:30am here in NY and I am awake.  That says it right there.

I'm also single and live alone.  My friends were really really helpful when I had my surgeries but I wished someone would just hold me, you know?   And I still do.  

I take Cymbalta for depression and Xanax when I need it.  It helps.

Thank you so much for writing all that you did, and for starting this topic.   

cat08

Dear lifegoeson,

When I would see commercials or signs or posters for breast cancer before I got it, I had no idea how involved it was. For some reason in my mind I thought it was just the booby thing--now I realize. 

And thank you for being encouraging and honest. I was not sure at all if I could write about such things, as I wanted to some how be over this or a flagship of inspiration as a survivor. Like, "Ta Dah, I survived. Yippee." Or, in some weird way, and I do not know why, afterwards, I suppose, everything thinks it is over, and then it turned into this sensation that you go off like in a the 50s when women got pregnant and were removed from society until they had their "secret" baby and then some how came back and completely integrate again into everything as though it didn't happen or was over. I don't know why it is that way. It is a magical mystery tour. I sure hope the Susan Love foundation does a study on this part of things. It would be so nice to see just how many women & men with breast cancer are truly going throug this part of it also and we just don't know it. 

cat08

Does anyone know anything about this?

http://www.breastcancer.org/tips/new_research/20100506.jsp

Hattie

thanks for the link--a great idea.

I am about 5 years out from all this. cancer is (mostly) in the rearview of life.  I had family support.  also an awesome group of other survivors to meet with weekly or whenever or anytime i needed to call.  those of us doing this, get it.  it is hard for others to give the needed support, sometimes.  i hate for anyone to be alone with this.

i was told i would develop skills to deal with the fear and all, and that proved true.  it did take time, and help.   my family sure did not understand the lose of words and all that went along with that--very scary for me.  it all came back, i think.

it took me a lot of work to handle all of this.  i sure did not do it alone.  support here and in person.  family and a very few friends.  time. thought. art.  writing.  sharing.

 cancer sucks.  life, my life, doesn't.

hang in there and make contact with others.  you don't want to do this whole thing, but you have to and you can.

take care,

--hattie 

redskies

Thank you for your kind words, Cat

It does help so much to know others feel the same.  I tried so hard to be the "good" breast cancer patient, and felt such a failure when I totally crashed and lost it due to the insomnia and emotions, and quit my job as supervisor of a group home for adults with developmental disabilities.

Countless times I had been told how incredibly patient I was (I also taught kids with autism for years.)  I would always agree, yes, I guess I am, but I always added that I loved my job and the adults and kids I worked wiith, so that made it easy.  I could work over and over and over on one small thing because I knew that eventually what I was trying to teach would be learned, and that just felt so awesome!  I loved it!

But then, after the diagnosis and treatment, it got progressively more difficult.  I realized even my "favorites" were getting on my nerves in a way I couldn't handle... something I'd never experienced before.  I also started having terrible problems with my memory and multi-tasking became impossible- I couldn't even single-task!  The last day I worked I had to force myself to do every single thing that I did (which was not much) and went home utterly exhausted, physically and emotionally.  I called my boss the next morning and told her I couldn't handle it any more.  I hope some day in the future, I will be back at it, or something similar.

Cat, I'm so happy you found someone to talk with!  Given all the research I've seen about how cancer hits people in so many ways, it's hard to believe we don't all receive a referral to an onco-psychologist when first diagnosed!  Just someone to talk with, just even one time, while it is all so new... and to know that person is there anytime you need them! I hope you click well with the person you have found.

Great link, I am familiar with one of the Cancer Support Network affiliates in my area, and am taking part, hope it yields something good for everyone!

Lynne

cat08

RedSkie,

EXACTLY! You said it so well. Thank you. 

Cat