Broken
July 28th, 2010
I have often wondered if I have a motto. Certainly “don’t kvetch” would be a contender.
That is to say, it’s hard for me to write about the challenges of my current situation, without couching it in incisive analysis or wry humor.
But right now, I don’t have much of either.
I talked to my husband a bit and had a little cry. He lent an ear, but he too is weary. I tried a few friends I keep on speed dial and got sent to voicemail.
Maybe it’s self-pity talking, but I feel like everybody is sick of my cancer and is ready for me to move on.
Since my usual supports are not available, I’m talking to you, my dear readers. Here is my latest angst.
When people see me these days, they say two things. First: “Wow! Look at all your hair! You look great.” And, “How are you feeling? Are you getting back to normal?”
I feel obliged to try to explain how my life hasn’t just been put on hold for these past 9 months. Damage has been done. It’s not just picking up where I left off; it’s repairing all that has been broken.To make matters worse, I am not the same. My usual modus operandi of storming through and getting stuff done does not work. My energy is limited, my capacities diminished. I am drained by long term emotional and physical effects as well, as I contend with horrible body grief and continued pain from my surgery.
Some of my well-meaning friends listen compassionately as I try to revise the expected survival narrative of gratitude and relief at “being done.” Others reinterpret my story as a matter of time and patience, as if these are all that stand between me and my former self.
Maybe it was a bad idea, but I started reading and actually watching videos of what reconstruction (which won’t be for 18 months) will entail.
I will summarize for you here in one word:
Ouch.
Again in one word… my reaction?
Damn.
I am having trouble seeing my way out of this current state. I feel rudderless and confused.
These are not emotions I am accustomed to in my previously focused and purposeful existence.
Update: I got an amazing response from this from CURE magazine. What a gift.
This entry was posted on Wednesday, July 28th, 2010 at 11:29 pm and is filed under Survivorship, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
i hear you. i hear you. i hear you.
in a word:
TRUTH
others have also wanted to wrap up my breast cancer ordeal in a nice little 60 second commercial like wrapper. we are a nation of sitcoms that get resolved in 30 minutes. move on. next case. where to now. been there, done that.
but that’s not what breast cancer leaves in its’ wake.
it’s like Chinese water torture.
drip*drip*drip*drip*drip*drip*
i am all ears. anytime you want to kvetch.
thank you, tess. your note brings tears to my eyes. it’s so much less lonely to feel understood. <3
I don’t know what to say. I went through my lung surgery/rad/chemo in 2005 and I’m still not the way I use to be. I blame alot of it on myself. At first I had the “go get ‘em” attitude and as time went on I lost that attitude. Don’t know why I stopped trying. Maybe depression. I’m on a med for it but doesn’t seem to really help. I just have to give myself a few good kicks in the ass and readjust my thinking.
i’m a go-getter too. i’ve not been depressive in the past and don’t think i am now, but it seems like a fraught road ahead. i think you are right that a big part of the challenge is coming to terms with what is reasonable to expect of ourselves. and it’s hard to sort through that when the people around you just see the fabulous hair on your head and the chemo pallor gone from your skin. they have no idea about the invisible pain (emotional & physical) that lurks beneath that facade.
I have no wise or magic words for you, but hope you find some peace and comfort. Started reading your post and immediately burst into tears. I, too, am at the place where everyone comments on how great I look, how much hair I have, etc. But I am one serious mess inside. I don’t walk around feeling stressed and emotional, but for the past couple of weeks I cry at the drop of a hat, and usually can’t even tell you why I’m crying. This is so not me. The always strong, always in control woman who had my infusion center and hospital nurses marveling over how I blazed through multiple surgeries, hospitalizations for blood clots, 6 mos of chemo, rads, lupus flare coming off chemo, etc., all with a smile on my face. Now I have no idea who this weak, weeping person is I see in the mirror. I don’t know who this person is with an arm swollen to three times its size from lymphedema, who can’t make it through the day without at least one nap, and who can’t even get out of bed and walk around without the use of narcotics. Small consolation, but know you’re not alone and I’m thinking of you, praying we can find a better mental and emotional place soon. It has to get better. *hugs*
amy, thank you. your story is a HUGE consolation. *hugs*
Three words: Post Traumatic Stress. They used to call it shell shock. You’ve been through a war, and yes, you survived and made it through the battle, but my Dad still had nightmares 40 years after WWII. Your war was far more personal. You weren’t fighting an enemy hiding in the trees, it was hiding in your body. Nobody could possibly expect you to feel comfortable in your own skin this soon. And since your body has been altered, it probably doesn’t feel much like your body anyway. It takes time.
If you didn’t feel like this, I’d be worried about you. It DOES get better.
Aww, sweetie, I am SO sorry. But I do get it. I was fortunate in that I didn’t have cancer, but something totally different that ravaged me, took my hair, dignity, energy, all that & left me with the consolation prize of an immune system that no longer works past spits & sputters. Plus I got the bonus timebomb! LoL! It’s been 2 (?) years now and – yes – everyone just wants it to be done. But it ain’t. It’s here every minute of every day and nothing is ever the same again. Every day, several times a day, is a *choice* to go one more minute, one more step to fight the agony and everything that goes with it.
But until recently, I felt completely alone, even though I have a husband and children. And then, quite by accident, I found Twitter (something I had vowed to avoid!) and then @thatdrew, you & others. And my life completely freaking changed. Overnight. A lot of that was you and the way you chose to handle your journey. You gave me a miraculous gift, you have no idea. And now it’s just not quite as bad.
So, sweetie, you kvetch, you rail, you talk to us. We are here, we care, we get it, we support you. Though we may not be in your backyard, we are with you on the front lines. Much love!
I still don’t recognize the human in the mirror. That tired, pathetic shell of the vibrant woman that was once the inhabitant.
But. Tonight a young woman told me she liked my one inch post chemo hair that I went to great effort to muss up and give texture.
That was after I quit work early and had a 2.5 hour mid afternoon nap.
My new normal.
I am very lucky to have good health and am humbled by your stories. My admiration for you all is overwhelming. ChemoBabe, you’ve done so well and kept so “up”. You’re allowed to get low, you’ve come a long road but still have a way to go. I wish I could help. Please keep writing, whinge (a good scottish word) if you need to, I, and many others, are here to listen. Sending you love and hugs.
i think i want to collect all the different words for “complain.” i love “whinge.” i promise to whinge now and again. it has really paid off here.
Hang in there, ChemoBabe. Your feelings are your feelings, you have been through so much, and you have more to endure. We’re not tired of listening to you talk about the truth, how your cancer has wrecked your body, old hopes and dreams for your life, and the old “normal” you and family life. Do keep writing and telling the truth, even if it’s ugly and painful and sad. You are loved, and you are not alone.
It’s so hard to live up to everyone’s expectations of how you should be doing once treatment is over. Americans like to wrap everything up in After-School-Special-neat packages with happy endings, but life isn’t like that, and cancer REALLY isn’t like that. It’s one of the reasons that looking like I’m not sick is a bummer, because everyone’s expectation is that I’m functioning like a normal mom/writer/wife/woman. But I’m not.
I think it comes down to managing your reaction to others’ potential disappointment. Living for ourselves instead of for others, even for our most adored loved ones, takes a different mindset and we’re not used to prioritizing ourselves and our feelings.
Bitch if you need to. Nap when you need to. Keep writing because it helps. We’re behind you all the way.
-The Carcinista
thank you, carcinista. you are one of my heroes <3
I’m so there with you, ChemoBabe! <3 One thing to keep in mind that my nutritionist said is that after chemo you no longer have the stuff left in your brain to feel 'up' and cheerful. We have both been blessed to have still continued to have some humor left and cheered up others, but there are times when the happy feelings just aren't there. Hang in there. This is still a process. Praying for you, friend, and sending a big virtual hug. Do you have a breast cancer support group? Just knowing from others who have been there has helped me know what is common and (ha!) 'normal.' Your sharing of what you are really going through helps all of us to acknowledge how bizarre and sometimes painful our cancer journeys are. Take some time to focus on how many blessings you have to be grateful for (and sometimes those are pretty bizarre themselves!!). ;D Love you, friend! Thank you for being real with us.
i’m far, but so much understanding… you’re so precious: you, your blog, your thinking, your spirit, your fun, you’re unique ! Love you, babe! Cancer is damaged thanks to you, it can’t be quiet… you’re broken, we’ll broket it ! xoxo
The timing of finding this post couldn’t be better. At 36 I had kidney cancer, @38 mom died of lung cancer and then @41 diagnosed w/aggressive BC. I will hit my 1 yr mark for finishing all treatments this August. I have all kinds of worrisome new pains and symptoms that I have to consider could be yet another cancer, but so far has not been. My Dr. thinks I am becoming a hypochondriac, my friends and family ask me why I always think everything unusual could be cancer? I “should be feeling lucky to be alive”. I skated through my first one, but this time, I feel like I am becoming a bit neurotic. I live alone, which doesn’t help the every noisy mind. My body and mind are a battlefield, and all the tools I have pulled on have not worked to recover yet. I too hope to find some peace as I don’t want to be on anti-depressants, I need to learn to deal with this new me (and love it somehow!). I have yet to be brave enough to consider reconstruction, not sure I have the stamina for more appt’s. I wish you all the best, and strength to find the new you too! I appreciate knowing I am not just weak, and that others are facing this too. Thanks!
Hi Lani….I just finished reading your section in the alumni magazine & came to your site…I haven’t gotten past the first post, but I can already tell I will be spending some time here. The universe has thrown such a cancer-shaped pile of crap at you, and here you are both (1) allowing yourself to experience the crap for what it is without sugar-coating (ok, that metaphor is now officially icky…sugar-coated cancer crap…sorry) and (2) using that crap experience to do this awe-inspiring advocacy work. There is a lot to say, and like I said, I’ll be back to read more, but for now just let me say — wow. what a powerful voice you are. if that’s whining, my friend, then I say go for it, let that whine ring out, b/c the world needs to hear what you have to say. Bravo, and thank you. I’ll be in touch….
I’m with you. My partner Ann Joyce forwarded your blog to me. I had surgery to remove a tumor from my brainstem in 2007 when I was 43 and then radiation for a second tumor in the same place this spring. Nerve damage caused significant problems with vision and balance and paralysis on the right side of my face (that’s getting better) and fatigue. I began working again part time (literacy coach in the Highline School District)at the end of last year and hope to work full time this fall. I’m feeling hopeful, not that I will be the same again but that I will live a life with joy and grace. I know we all have our own journies, and they’re all hard in some ways, so I’m thinking of you. It helps me to read other stories,so thanks so much for sharing yours and if you’d like to check my blog it’s cantduckit.blogspot.com You are an inspiring educator to Ann and to me. My best–Mary
I’m with you in this. People don’t know what else to say, they think they’re being helpful by trying to ‘cheer you up’ and ‘keep you positive’ but you can only feel what you feel and it’s hard. It takes so long to even begin to get back a portion of that old get-up-and-go. And there are new aches and pains that are a result of the damage done to the healthy parts of your body to kill off the fracking cancer cells. You also have the very real fears of recurrance that come up each time you go in for a routine follow up. The fear that every headache means it’s metastasized to your brain, every backache a sign that it’s in your spinal column…
People don’t realize that sometimes you need to talk about all this stuff, and that you’re not complaining. I do like the term whinge though and will be using that quite a bit
Hang in there, complain, bitch, whinge, rail, rant…whatever you need to do, whether it’s with your family or here or on a survivor forum…you’re not alone in this and no matter which way you need to lean, someone will be there to prop you up.
Lani, you have been such a hero to us, baring your soul through this rocking road you are traveling. There are thousands of us reaching to each other,to share strength with those who need us as well as to lean on those who are stronger than us when we need comforting. If phone calls go to voice mail you know there is always someone here in cyberspace to listen, empathize & send you lots of love. Hugs (the cautious hunched-shoulder hugs that don’t squish the chest).
I too have struggled with the demon called cancer. My colon cancer was diagnosed two years ago. The only thing I can say is it is a roller coaster ride! I have had four surgeries, three rounds of chemo now and they tell me that I’ll do radiation by Christmas. I’ve been told I was in remission only to find out three months later that it has come back with a vengeance. Everyone tells me how great I look and how good I’m doing or my personal favorite “you’re so strong”. But inside I want to scream. I’m not the same and I feel guilty when I tell someone that. Its like they expect you to be better and get over it. Cancer does change you and it is okay to cry, scream or punch something. You are not going crazy and you are definitely not alone. I wish I had the answer but I’m still looking myself. I just hope that you find some comfort in the fact that you have others going through it too. By the way if someone has found the answer….please share it with us. How do you get out of the funk??
I am having to physically restrain myself from printing out this entire thread and carrying it around to everyone I know and wave it under their noses saying “See? See this? THIS is what it’s like for me now.” The issues of survivorship are staggering. Physical, emotional, financial, spiritual…. No one prepares you for this part. But you ladies are a fabulous cheering squad (my fave is the non-chest-squishing hug).
I can tell you that the singlemost thing that has helped me to cope is probably not what you want to hear – exercise. That’s the last thing you feel like doing. But I can tell you personally its made a huge difference physically, and an even more huge (huger?) difference emotionally. I started out with my dusty old elliptical machine. I didn’t even last 2 min before I was lying in the floor gasping for air. But I kept at it. Now 3 months later I am, for the 1st time in my life, a runner. Me. Couch-potato, exercise-hating, still-recovering-from-chemo me. But it’s therapy, pure & simple. It’s not unusual for my morning run to include a good cry, or a good laugh.
The ranting, venting and whinging help, too. And all that courage and strength crap is a load of hooie – we keep on going because we don’t have a choice.
I have metastatic cancer, so I will live with it forever. The best coping strategies I have used include joining a support group that laughs a lot yet can get very serious; developing a hobby into a passion that I pursue daily; being absoutely open about my illness (although not always the details); and getting quiet time in the natural world on a regular basis. On days when I wake up filled with anxiety, sadness, or fatigue with what I sometimes must endure, I am very kind to myself. “Poor baby,” I mutter.”It can be hard, can’t it? But how are you feeling right this second? OK? Then enjoy this day, this gift to be treasured.” Sometimes my mood shifts after this, and sometimes it doesn’t, but the tiny interior conversation always makes me feel better.
I remember one day when a lady from one of my classes told me about her daughter who recently had BC and she said ‘ You know- she got through everything o.k.- but now she has this big bout of depression she never had before- be careful for the depression.’ and part of me thought “well, that won’t be the case with me’ and the other part said ‘Oh my god, what if that happens to me too?’ and it did happen… and I found out that it happened to a lot of people and that was why I was so adamant about the Inner Tough Girls moving forward.
And there are days still when it sneaks up on me and gets me down for awhile- but the times in between get longer –
And I agree with Terri- the exercise made a huge difference and it was the hardest to do because I felt too tired to exercise- it’s my profession and I was too tired to do anything for a long time.
I look at it as part of my ‘prescription plan’.
I wish there was some magical answer – but the truth is, as technology gets ‘better’ there are more people living with the long term side effects of cancer and depression seems to be one of those for many of us.
Keep writing and never ever feel like you have to keep up appearances because you are a ‘hero’ or ‘inspiration’ to other people. That is a heavy load to carry.
Ahhh, so true. My own breast cancer experience was a year of physical trauma followed by a year of psychological adjustment and (now that I’m through it I can admit) real trauma. There is the expectation of others (yay! you’re done!) to deal with and put aside. The loneliness that comes when you realize that even people who love you don’t get it. And the slow process of realizing that you can’t go back to where you were before cancer. This may be even harder for those of us with a’suck-it-up, don’t kvetch’ philosophy because it is hard for us to give cancer its due. Know you aren’t alone and that it does indeed get much better! It just takes time.
Wow, here I sit reading these posts awaiting my double masectomy and lymph node removal. It’s amazing to hear the honesty in all of you all’s words. I’ve only known now for about 3 weeks and am just embarking on this journey. I’m not ready for it at all. I’m 43 years old and just lost my husband unexpectedly last year and now this???? I’m pissed! I’m sad. I’m shocked. And I don’t feel like the strong person I was before my husband died. Yet somehow I’m supposed to drum up this super strength. When most people see me they look at me with pity (I live in a small town) and I just hate that. Yet here I sit sounding kind of pathetic. I’m sorry. Just venting. This is all so scary. What if my son ends up with no parents? He has been through so much already. I’m stunned. Thanks for letting me vent.
Hi, Thanks alot for the great post. You’ve helped me a lot.
At 40 yrs. old, I recall during chemo, in the middle of one particularly brutal hot flash, my knees buckling and falling against the door jamb thinking, “This isn’t the flu, this isn’t going to go back to the way it was, this is forever”. I was in major estrogen deprivation, and 5 years later, a, still feeling like an amputee. I lost all feelings of femininity, of self, sexuality, and became this androgenous, asexual droid. Little by little it is coming back, but, it will NEVER be NORMAL again. I lost my husband to a younger woman after all this, and at 46, feel like my future is bleak, for relationships, at least. I hate cancer.
oh ellen… i am so sorry.
I’m in treatment in South Korea and finding your blog has been the best thing so far in terms of finding support. My friends are great – but they are also people I used to run with every weekend and that’s not something I’m too up for anymore, in spite of running my first ever 10K after being diagnosed. Since I’m in the only English speaker being treated at my particular hospital, it’s been a pretty lonely journey. It’s nice to remember that there are other people out there that understand (and who I could converse with without the oddness of using Babelfish to translate it all!) I have been running some of your posts through Babelfish for people I know over here though, so you’ve got some Korean fans as well
thank you, amanda! it makes me so happy to have been a support for you. best of luck — and congratulations on the 10K.