Emotional Rollercoaster

By Warrior Goddess Saturday, January 30, 2010

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By all accounts, one would say that I should be grateful that I am a two year survivor and that I got through one of the tougher journeys I have faced in life with some measure of aplomb. And yet, I am not really, or rather, I am not any more. Somewhere between the end of radiation in June 2008 and just two weeks after a mandatory hysterectomy and salpingo-oophrectomy some 6 months later, in December 2008, I snapped and the woman I was prior to my diagnosis and during my treatment (when I was a warrior goddess) fell away into the darkness of an abyss I cannot climb out of. True, I was thrust into instant menopause with such intensity I didn't know - and still don't - whether or not I am coming or going half the time. Because my cancer was entirely hormone driven, I am not able to take hormones of any kind (be them bio-identical or otherwise), which simply doesn't help matters any. More than half the time I feel as if my body and mind were inhabited by alien replicants; I am not me any more. I am someone else...a stranger....a person I don't know. Menopause? Stress? Insanity? Fury?

As hard as that is, the truth is that something else shifted in me I can't put my finger on. Or maybe it is this simple: When I got cancer at the age of 52, the very same age my own mother died from lung and bone cancer in 1975 when I was 19 years of age, I died inside once more...just as a part of me died when she died so long ago. For me, getting cancer the same age she was when she died was and remains the last straw. No matter how positive I tried to be, no matter how hard I fought what technically was the most simplistic of cancer (DCIS, Stage 0, estrogen and progesterone positive, I am embarrassed to say, honestly), no matter how much I forged a brave front in the wake of my own situation, the fact is that underneath it all cancer simply broke me. Humpty Dumpty can't be put back together again.

And so here I am.

Anger courses through me like blood, my moods change as quick the wind on a winter's night, rage comes out of me with venomous fury, unchained and unbound like Medusa....verbal warfare hitting my target - usually my husband, unfortunately - with lethal precision and force. He weeps and cries, while I stand near him, a Black Widow spider triumphant and victorious.

Or am I?

Where did I go in the wake of this? What happened to the gentle and loving person I was, the person I used to be...you know the one..the one who dropped everything to help a friend, the person who would hold someone when they cried, the one who took time out to listen, to care?

Where did I go? What swallowed me whole and left this creature in its wake? I can't stand her.

God, this is a lamentable, pathetic post. I am so sorry for writing this because so many of you are fighting more intense battles than I ever did with this, but forgive me for it. It is the first step out of my darkness.

Comments (18) | Add comment

Phyllis Johnson, Health Guide

1/31/10 7:47am

Your pain is your pain and can't be compared to anyone else's, not by cancer stage, age at diagnosis, side effects from treatment, or any other criteria. Your suffering is real, and as you point out probably has many components--the hormonal changes of sudden menopause, reliving your mother's death at the same age, and the post-traumatic stress of finishing cancer treatment. It is not unusual for people to hold it all together for the crisis (in your case cancer treatment) and then fall apart and start to really feel the fear and other emotions when the crisis is over.

You've taken the first step out of this nightmare by writing about it. Talk to your doctor about medications you could take to smooth out your emotions. There are some non-hormonal possibilities out there. Add in some counseling for the grief issues. Continuing to journal may help in that area as well. Then cut yourself some slack. No one is always sweet, strong, gentle, and good humored. Balancing rest, exercise, and healthy food may help also. I'm sorry you are going through such a difficult time, and I hope that you soon start feeling better.

Warrior Goddess

2/ 6/10 10:44am

Phyllis,

Your succinct comment basically summarizes the feelings I have had for a long time, just as it addresses the methods I need to employ to get out of the abyss I have been in for too long. Joining this site has helped me to be less hard on myself and, as you said, to cut myself some slack, to give myself room to simply "be". I am hard on myself - it is what has driven me to get past other things I have faced in life - but it is exhausting for me, too. I put too much pressure on myself to be a certain way, all while forgetting (ignoring?) that I am still going through the journey.

I will be starting my annual round of Dr. visits - and mammograms - soon, and will discuss these issues with them, too. But in the meantime, I will write and share my thoughts with the people - this group - who truly "get" where I am coming from.

Thank you, Phyllis.

PJ Hamel, Health Guide

1/31/10 11:10am

Welcome, Warrior - YOU are still the same person. You're seeing a different part of yourself. Not good, not bad; just different. And entirely expected, given the gut-punch you received 2 years ago. Validate your feelings - yes, I'm angry, and hurt, and bitter, and sad... and everything else society sees as negative. You have every right to feel this way. But understand that this is a journey through darkness that will end, with time.

A couple of things I've discovered, through 8 years of ups and downs post-treatment: time heals. And things always change. You won't see this "other woman" forever. You may not see exactly woman you used to see, either. You'll find a wiser woman; a stronger woman. One who's had her blind faith in good health shaken to the core. Who's having to learn to live with uncertainty around the most basic human elements: life and death. And gradually, you'll accept these new circumstances in your life. You'll adapt to this change. And you'll move forward.

But first, you need to get all that rage out of you - which is what you're doing, unfortunately with your husband standing in the line of fire. I'd suggest some counseling, which so many of us take advantage of during this time in our lives. I suspect much of this is hormone (lack of hormones, precisely) driven. Menopause is a bitch, no doubt about it. It can turn you into EXACTLY the screaming harridan you describe. And you know what? Ask your doctor about hormones. The latest thinking is that a small dose for a short time doesn't increase your risk of recurrence. So don't automatically write off what could be a huge help to you as you get past these worst effects of sudden menopause.

Please read our post on cancer competition, too. I think that'll help you.

Finally, keep writing here. There are plenty of women here that have been where you are. Some are there now; some have moved past this stage. But you'll surely find support here. Cancer is a rock in the path. Step over it; the path will still be there. And this, too, shall pass. Really. Namaste- PJH

PJ Hamel, Health Guide

1/31/10 7:39pm

Whoops, sorry, here's the link for the cancer competition post - PJH

Warrior Goddess

2/ 6/10 12:22pm

PJH, thank you and more thank yous abound! Your response to my first miserable missive gave me a sense of hope I thought I lost. Knowing that the remnants of my normal self - the pre-cancerous self -are still there, albeit underneath the morass of lunacy, brings me comfort. Oddly enough, after joining this group and beginnig to write about this journey (and getting these wonderful responses), I feel the tide of change within me...can feel that I am slowly lifting my heavy legs over the gigantic boulders (as opposed to a rock, LOL) that have blocked my path and am moving forward again. Baby steps yes, but forward movement. A sigh of relief. I have actually been in a great mood all week - a mood that has been lost at sea for too long - and I am smiling. I also reached out to a social worker at Sloan Kettering and will be starting my counseling journey in about two weeks. Slowly, bit by bit, step by step, I am on the path towards healing the emotional angst I have felt for so long. Wowee.

I read the "cancer snobbery" post you suggested and I was absolutely BLOWN away by it! OMG - it is soooooo true (I know I am sounding like a teenager, but so be it - LOL!). OMG. I felt exactly like those quiet women you described who feel like resounding imbeciles because their cancer was not nearly as bad as other group members. Let me share.

I think it was in September 2008, several months after my lumpectomy and radiation concluded, that I decided to get off my tushy and go to a local support group about 10 miles from where I live. The night I went the group was small - there were 5 of us, including the facilitator, who was also a survivor. Most of us fell within the same age range - late 40's/early 50's - with the exception of one older woman who I believe was in her mid 70's. Of all of us, she had the toughest journey - double mastectomy and the rest of the whole shebang.

I am, by nature, a very charismatic, open, approachable and loving personality. Lively, warm, articulate (and yes, I talk with my hands too), I tend to be what my mother called a "woman's woman". In group situations, I am usually the leader (it is not a role I choose to play, but rather one that happens) because it is easy for me to speak to what I feel, which in turn inspires others to do the same. In life in general, I am supportive of other women and their journeys and appreciate who they are as people and as women above all else. I don't invest my energy in jealousy and unnecessary competition (even in cases where someone might be more attractive and successful than I am, for example), and am there to help others on their way. And yet, when I entered this group I felt as if I were an alien being with 14 heads and 87 eyes. I didn't feel welcomed by any of them (except for the facilitator), just as I didn't feel they really cared about my experience with cancer or how I was coping with it.

I remember talking about what I went through - this was before I went through the hysterectomy and salpingo-oophrectomy - and getting the distinct sense that I was alone in this process. As I spoke, all of them simply stared at me, silent and cold and perhaps thinking that I was some little whining weenie given my cancer stage. There was no, "Hey, I hear you, babe", no "you aren't alone", no "you will get through it". When they did talk, all they did was talk about their experience without even bothering to acknowledge mine even for one second. I listened and asked questions just as I normally would, but there was no real engagement, no connection, no sense of sisterhood. As I watched this dynamic unfold, I grew quieter (very unusual for me in the group process) and felt myself retreat into the corner, feeling guilty that my situation was less traumatic, complicated or painful than theirs. And when the session ended, I left, vowing never to return because, as the kids say today, I "wasn't feelin' them". Even though I still get mailings from them, I will NEVER go back there.

Cancer is cancer and it sucks for all of us. Though I cannot possibly imagine how horrible it is for someone who loses both breasts and has to go through endless rounds of radiation, chemo and then reconstructive surgery, I most definitely DO feel for them...most definitely wish I could embrace them and take their experience away. But people like me, we DCIS/ Stage 0 folk, also deserve that same kind of embrace, that same kind of love. Instead, we get ridiculous comments, as I did from one friend who had stage 1 invasive breast cancer, that I should be bouncing back faster than she was because my cancer was "no big deal." Little did she know that in a way my cancer recovery was worse than hers. I have fibromyalgia and chronic fatigue syndrome, and radiation treatment, coupled with fibromyalgia, is deadly. While most people suffer from the cumulative effects of radiation at the end of treatment, I felt mine at the conclusion of just my 3rd day of treatment. That weekend I slept for 20 hours. By the end of the 3rd week, I nearly collapsed in my office from exhaustion.

All of our experiences are unique and valid. Perhaps this group will illuminate this to others who don't understand that cancer - regardless of stage, type and treatment modalities - is terrifying and forces each one of us to face our mortality head on and deal with a new normal in our lives.

Sorry I rambled...I guess this has been bothering me...

Thank you, PJH - you are a godsend.

lake59

1/31/10 5:54pm

Hello,

I can REALLY relate to the intensity you speak about regarding your emotions and your ever changing mood as a result of drastic hormone reduction! I too was vibrant and warrior like when going through my diagnosis - Invasive Lobular BC, stage II, chemotherapy, and then mastectomy from Aug - Nov 2008. But, when I began Tamoxifen and also learned that my mother-in-law was re-diagnosed with a BC recurrence in Dec 08, I began my descent into a deep, dark place. I had an intense depression that my oncologist said was probably a combination of the Tamoxifen and the instant menopause from chemotherapy. He advised me to stop Tamoxifen and take an anti-depressant. I am doing that and also seeing a therapist and I have gotten acupuncture and I do a theapeutic, inner dance which I have found to be incredible for getting out my emotions in a really safe environment. I feel so conflicted though, because I feel I "should" be on a hormone blocker. My oncologist is very understanding and respectful about how they make me feel. He wants me to be enjoying life and not completely zapped and very unhappy. I have asked Drs about maybe getting a little estrogen supplement and I have been told "not a good idea". I am still searching for a Dr who might consider it.

Anyway... time does heal, along with acknowledging and accepting your feelings, talking to a therapist if you can, exercising if that makes you feel good, connect with people you understand (like this network). You are doing good things, and making steps. I really and truly understand the baby step concept. And, my husband has taken so much emotion and anger and sadness from me, too. He continues to support and love me for which I am thankful. I have been there for him in some tough times, too.

Continue on - you are a warrior for speaking truthful with how you are feeling!

Lake59 - ie Carol from NY

2/ 4/10 6:55pm

I was diagnosed with inflammatory breast cancer, triple-negative, on 1/5/09. I had chemo, surgery (17 positive nodes of 21 removed), and then radiation. All treatments ended on 9/11/09.

Even though hormones did not feed my cancer, I cannot take any. I was on HRT before for extreme hotflashes. All of the off brand medicines I take only help a little.

Sleep is difficult if not possible.

I feel the same as you. It is so hard to be upbeat and positive when I know if a recurrence ever happens, it is basically the end for me in a very short time.

I can't get over that statistic.

I am tired of keeping up with breast cancer.

I want my old life back.

It never ends with breast cancer, you have to always keep up.

How is that possible? Can't you go back? Can't you stop the insanity of it all?

I understand.

I do.

barb38

2/ 4/10 7:31pm

ya having your life turned upside down by hearing U have cancer ,but then treatment just flips u again. I was put into early menopause at 38 with hormone treatment. I was so emotional and no sex drive and never slept. I had joint pain. I became very forgetful I was just miserable .

My hubby was so supportive and my Dr. and now 6 years later I still look back and say life really sucked then,but I made it and when emotions get to u look for support here with family and friends. Best to u

Melanie

2/ 5/10 3:53am

Your post struck home. Like you I made it through the treatment fine. After it was all over I thought I'd get right back to normal. Instead I've had waves of depression and irritability... okay, I can be a B---- to live with. I am normally a very patient and positive person. Some days everything irritates me, and in order not to snap, I walk out of the room while muttering to the universe about the stupidity rampant in my life. The carpet is showing wear patterns. Yes, lack of hormones has a lot to do with it and hot flashes can make anyone whacked out! But I think a lot of it is survivor's guilt and maybe you can identify too. Yes, our cancer wasn't that bad compared to members of our families (my 3 sisters). They really suffered and died from this stupid disease. They were too young to die and left us missing them at every event in our lives. We've beaten the disease they couldn't and that's a lot of guilt to carry. It makes me really angry that I don't have my sisters to call when there's something I want to share. Time will heal all wounds... blah blah blah... It would be nice to kick start time into high gear. Hang in there. I'll be thinking good thoughts for you... between homicidal episodes!

Nancy Jakubowski

2/ 5/10 3:00pm

I feel the same way. It does get slowly better as time goes by. My memory however is completely damaged. I have trouble remembering very simple things, like directions to places I've been many many times before. I forget where I'm going while driving and it scares me that I go into these blank moments. I feel like the chemo has destroyed some major function in my brain. I am 47 and I had stage 111 breast cancer back in 2006. I am just now beginning to see my old happy self coming through the darkness, even though I am pretty sure my memory will never be sharp again. I have forgiven myself for having breast cancer and I have finally allowed my old self to slowly return. Bless you and I hope you will one day see your old self again too!!

PJ Hamel, Health Guide

2/ 5/10 6:47pm

Chemobrain is tough... it does gradually get somewhat better; and you might eventually come all the way back. It took me several years to get through the fog; and 8 years later, I still have trouble with vocabulary. I don't know if it's the chemo or menopause, but I'm definitely not the person I once was, mentally. I have to work hard for things that used to come easily; sometimes I still forget things like my phone number. Don't mean to be a downer, but that's the way it is for me... PJH

Nancy Jakubowski

2/ 5/10 11:31pm

Thank you. I know we are not alone, but sometimes it feels like I'm a scared monster and I am ashamed of what I have endured and how I look. 3 yrs later I am still trying so hard to look at myself in the mirror and see who and what I have become. Time will heal us all so I am told.

Nancy J

PJ Hamel, Health Guide

2/ 6/10 6:38am

Nancy, I feel for you. Life can be so hard sometimes; it's life, and preferable to death, but SO hard getting on a comfortable, positive-feeling path. We never "get back" to who we were; time doesn't travel backwards, and we can't undo cancer. Anger is a given; validate it ("I have every right to be angry"), then try to let go; because all it brings is pain.

I think the goal is to take the cancer experience; understand if nothing else, it's made us stronger and more aware of the whole breadth and depth of life, both the good parts, and the tough parts; and build on that. I am who I am; my hair will never be the same, my health will never be the same, but I'm still here, still moving forward, putting one foot in front of the other. I get up each day, do the best I can - work, home, relationships - go to bed at night, and start again the next day. No regrets; no "woulda, coulda, shoulda." Just - living in the moment. That's my mantra, anyway.

Be well - PJH

Gini

2/ 6/10 12:30am

Once the children were grown and semi on their own, I thought my life of independence would return - sort of any way. Low and behold cancer struck - breast cancer, surgery, chemo, radiation. Almost 3 years in and Kidney cancer, breast cancer returned with a mastectomy both in 2008. Reconstruction during 2009. Hmmm and then February 1, 2010. A new gowth. In yet a different spot.

All the other times anger and the thought that it can NOT have me now helped me travel through each faze. I also would go through quietness, acceptance, anger, and it even seemed that I "forgot" that cancer lived inside of me.

But I would be soooo mean in reactions to others that complained about small incidental things in their lives. I could hear my mouth, but could not stop the sound.

That was even worse.

But now - again-- Where to I pull the energy to be everyone elses backbone. I just don't want to take care of them this time. I just want to be quiet.

PJ Hamel, Health Guide

2/ 6/10 6:30am

Gini, first, I"m sorry... Yet again you have to go down this path. Perhaps, this time, you don't have to take care of everyone else; be everyone else's "backbone." I've found that people want to help, and when you kind of stand aside and give them space - most people will step up and become the backbone. Not in the way you'd have them do it, perhaps; and not the way you'd do it yourself. But each person will have his/her own way of becoming strong, and of being there for you. Some will back down in the face of cancer; some will fade away from you. But there will be those who stand beside you, who offer their shoulders to lean on, wise counsel and, most of all, the love to see you through this. Peace - PJH

Warrior Goddess

2/ 6/10 10:28am

My dear sisters in this journey,

I have every intention of responding to each and every one of you, but first, I have to give all of you a collective (and very hard) hug! For the first time since I started this ridiculous and annoying journey (not to mention, extremely terrifying, mind bending, fear-filled etc), I feel as if I am finally "home", safely ensconced within the arms of my sisters who have also walked this journey...who understand the rages, the impatience, the anger and the resentment...who understand all I feel, even if I haven't articulated all of it as yet. All of you have touched my heart and reached into the place I have (up until now) closed off to others (including my husband, family and friends) and are slowly, deftly pulling me out of it, giving me the room to vent, release my fear and my fury. For the first time in years I can see a tiny light at the end of the tunnel. It's because of you.

PJ Hamel, Health Guide

2/ 6/10 10:54am

So glad to hear from you, and so happy this commuity is helping. I always envision a long line of women holding hands, moving forward; each of us is being led by the woman in front of us, and leading the woman behind. And, together, we have the strength of millions. Stay in touch - love hearing from you. PJH

maryclaire

2/ 6/10 3:00pm

I just read your article and cried, for the first time in a long time. I had lump, chemo,and radiation in 2006 and double mastecomy in oct. 2009. I currently take armidex. I had a great attitude went back to work, but lately I feel so sad and moody, snapping at the people who have supported me-husaband and children.

I had plans to eat healthy, work out etc. but I don't find myself doing any of this. I was sure I would get reconstruction but I don't feel I even want to deal with this.

Emotional Rollercoaster

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