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Marking Time

July 26th, 2012

With no big medical events on the calendar, I am, in many ways, more normal than I have been in almost three years.

But yet I am not.

I don’t need to rehash the combination of fatigue, lymphedema, fogginess, and trauma I have been left to sort through. I’ve covered that mess already.

If I am not my Old Self and I am not a Cancer Patient, who am I?

For instance, I like to think of myself as reliable. Right now I am not.

Will I ever be again?

Much of recovery involves managing expectations, both my own and other people’s –– and on an uncertain timeline.

It’s not easy. Sometimes I have focus and energy. Sometimes I don’t. Sometimes I have pain and exhaustion. Sometimes I don’t.

I have not found any predictable rhythm to it.

I have been trying to make room for this uncertainty: don’t overcommit, stay forgiving of my limitations. Let myself rest, bow out. Listen to my body.

Stay realistic, despite the ways I am champing at the bit to get back to that magical land of How Things Were.

Take myself off of a set timeline, let things unfold as they may. People call it a New Normal, but there is nothing normal about it.

If my wellness were the only uncertainty, maybe I could manage to make space in my life for this to work itself out.

But there is that other shadow in my life, the fear of recurrence.

With odds somewhere between 20 and 30%, most breast cancer patients cannot ignore that reality.

It’s a haunting and existentially impossible situation:

What if I give myself time, stay gentle in my expectations, and I get pulled up short again?

How do I let Time Heal All Wounds when I am Racing Against Time? When life may pull another fast one on me and the clock may abruptly stop?

This entry was posted on Thursday, July 26th, 2012 at 10:40 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.

17 Responses to “Marking Time”

  1. July 27, 2012 at 12:34 am

    Lani,
    All I can say is I get it. Life on the “other side” is easier, yes. Of course it is…. but it has its own set of challenges and they are very real. I was just on a webinar and the topic of identifying PTSD specifically in breast cancer patients was discussed (rather briefly as that wasn’t central to the topic).

    The feelings will become less intrusive in daily life. The passage of time helps. But, I just hit my 5 yr post chemo mark, started to do a bit of an exhale when something popped into my head. I THINK I read that the more crucial time with lobular is the 6-10 year period.

    It’s a merry go round and this “survivor” stuff is really a form of limbo. Cancer changes everything. My mom just said she’ll never stop looking over her shoulder.

    Just know you aren’t alone….

    xoxox

  2. Alli
    July 27, 2012 at 12:56 am

    I relate to what you are saying, how you feel . The thought of recurrence is like a sword hanging over our heads. It is a constant thought even if on some days we make that extra effort not to. I was told my chances are way up there for recurrence. Closer to the 50% number but not quite.Scared the daylights out of me!! I stopped taking all the extra drugs, Arimidex, Femara Tamoxifen so instead of understanding my reasons,ie:: horrendous bone pain that was debilitating.. other side effects I left my oncologists office with that sword dangling lower. After some consideration , my thought was how dare he!! He can’t play God tell me that I could very well have a recurrence. There are many who don’t and have not taken these drugs..
    I have found that there is no point in trying to predict if and when things will happen. As far as time lines and others expectations, I have none, I go at my pace not what others feel I should be. That way there are no misunderstandings..

    Take good care
    Love Alli xox

    • Angellinda Landowski
      July 27, 2012 at 9:30 am

      These words are ever so true! I sometimes spend days just trying to explain why.. I can’t do what I used to! I feel like I was tortured and left to Die. But still I’m alive and have a purpose in life! All my life I did things the hard way. So why would my Cancer journey be any different? It isn’t! But here we are, my husband and I. Alive, together and living on love & a prayer. Since he lost his job 3 1/2 years ago. So we have zero income! But we have each other and that’s priceless!! I have a Chemo brain filled with knowledge. I get it out when I can. For I’ve learned tricks that helped others when it was too late to help me. So I share whatever I can to be of any assistance!! I know I always wanted a large family. I have it now!! Its us Cancer fighters VS Cancer & the people that will never understand our new normal or as some think.. our ‘Excuses. I feel I won’t be understood. For too many think you’re done with the weekly treatments and you’re All better. When truthfully you feel Worse!! You see your body doing things it never did ever before!! This is a fight and challenge but I’m here to live to love another day. In tears, pain & in forced smiles. But I try to find Joy out of each day. Maybe today, Thank You, its in You!! I forever hold onto Hope for Cancer Prevention, Quality of Life after Cancer without recurrence & a Cancer Cure!! I hold dear to my heart the loving memories of those we loved that lost their battles.. That we’ll honor them, respect them and never forget them. Chemo brain or not!! We’re stronger!! I wish everyone their healing & comfort. I wish you all the Best that is yet to come!

  3. July 27, 2012 at 10:26 am

    I totally understand how you feel CB. You are not a “patient” and you are not “your normal self”. It sucks. You are now in limbo land…its like you are waiting for something to happen all the time, and in the meantime not feeling anywhere near normal at all. I have been told I will find that “new normal” but what is that exactly anyway? I feel for you. I am in that place too (minus the lymphedema). The muddled brain, sometimes I can focus, sometimes I can’t. I get frustrated at the simplest of things sometimes. Every once in a while I explode on some poor unsuspecting soul that was unfortunate enough to be in the wrong place at the wrong time and did something that I would normally overlook but instead I release the “inner bitch” on them. Every day is completely different than the last one. I find myself sleeping all day for a couple of days sometimes then feel guilty for not being productive. What I am slowly learning to do is forgive myself for not being who I was before cancer and accepting that it is ok. After such traumatic ordeals our body and soul need that down time, that time to do what ever the hell we feel like at any given moment. I have learned that I can’t make too many plans for one day. Some days if I even get laundry done I am feeling like a rock star! I am learning to just “make it up as I go” if you know what I mean. It sucks being in this limbo place, but it sucks more to be getting chemo/radiation/or in the hospital. The fear of recurrence is very real and very scary. There is not a day that goes by that I do not think about it. According to the statistics I should’t even be here at all (I had a 12% chance of living 2 years and it is going on 2 years and 4 months now) . I guess that what I would like to say without sounding cliche is that even though that fear is gnawing at you about the cancer coming back, try not to give that your energy…you know you will think about it all the time, every day, or every hour, but think about it and let it go. You have been through so much already why give cancer any more of your energy than you need to. I hate that you are in so much pain from lymphedema and that you cant get in to see the doc right away (that is absolutely unacceptable). I hope you can find some relief in some way. Pain is such a reminder of all the crap and fear and it sucks. But try to focus on and remember that today is YOUR day! This is YOUR minute! You are ALIVE!! and there are many out there who love you and who care (including myself). Every time my liver hurts badly I instantly think “is that the cancer coming back?” then I decide to tell myself instead that I can’t focus on thoughts like that and let them drag me down so much that I can’t enjoy my life that I am so thankful to have at this very moment. You are here and you are now and you are a force to be reckoned with! Cancer can suck it! Im rooting for you and you are always on my mind.
    Take precious care and don’t forget to be good to yourself.
    Laura

  4. July 27, 2012 at 11:16 am

    Oh Lani,

    It is SO hard, isn’t it? I have to agree with AnneMarie…the “new normal” shifted over time from “NEW normal” to “new NORMAL.” Somehow we come to terms with that sword hanging over us in the way that anything that is with us 24/7 fades into the background because it must. I recall wondering if there would EVER be a day when I’d forget about cancer. Just one day… Of course, you can’t measure that, or it’s over, right? I honestly don’t think I ever had one, but in focusing on embracing the gift that was my life, I was able to move from my waking and hourly fears to something that I could let sit quietly while I lived my life. For my money, there is no better way to beat cancer than to accept that we have no sway on when or how our lives will end, but rather in how we live each day we get.

    Maybe it’s like coming to the end of a roller coaster ride…although it slows down, it ends with a jolt and wobbly legs that stay around for a while.

    Hugs & love!

  5. July 27, 2012 at 4:13 pm

    Lani,
    This post speaks to me in an almost mystical poetically haunting way. I feel exactly the same way. It’s not like I think about cancer or recurrence all the time or anything, but the shadow is always there. For me, I’m not sure time will entirely change that, I just have to learn to live with the shadow and keep it in its place. It’s nice to know I’m not alone in this either. Hugs.

  6. July 28, 2012 at 10:59 pm

    There are many aspects of breast cancer that are not addressed in the medical world, yet they should be. One is the problems many have post-mastectomy. I believe that it should be mandatory to have at least a few sessions of PT once a body part has been amputated. So many of us have shoulder and back problems – many of these new back problems are also worrisome to women, who are afraid they are signs of relapse, when they are just new postures and muscle changes.

    The other is mental: treatment is planned, we go through it, it’s unbelievably intense and overpowering, and then that’s it. We are left on our own with the wreckage, expected to know how to pick up the pieces. I think it’s important that women are told that they have to plan for their post-cancer lives, perhaps with the help of a therapist if necessary but nobody tells you this. Your refrain is so common and heartbreaking.

    It is sad to me seeing so many women who finish treatment and then live years in fear of relapse. It is completely understandable and who knows if I would have been one of them? I recurred too fast to know – I only got four months from the end of treatment to mets. But, they were a great four months, thinking I had a future.

    Speaking as one who has the metastatic vantage point, it is a waste of time and energy to worry about recurrence. There is nothing you can do to change whatever your outcome in life will be. You did everything you were supposed to so now you need to believe that you’ve been given all this extra time, these beautiful years. You have the choice how you want to live them – in fear? In peace? Feeling as if you have a sword hanging over your head? Feeling as if you were given the gift of life?

    Whichever you choose – and it is a choice but not one that comes naturally – the outcome will be the same in the end. So why not choose peace and life? Learn to reframe things so you can see it this way. I wish more women would actively seek out help for what is surely PTSD, and learn to begin to put cancer behind them.

    From my point of view, you are a survivor. You made it. You get a life, and hopes and dreams and a future. You aren’t living in three month increments, from scan to scan, never able to plan beyond that. Enjoy it. Don’t take it away from yourself. Stop looking at the clock and start looking at your family, the beauty in nature and the gift you have been given – hope for a future.

    I don’t know how to tell you and all the others who came before and will come after you how to overcome fear. I only know, for 1 million percent sure, that it doesn’t do you any good and it is just making the time you have left – whether five years or fifty – less than it can be.

    Mandatory PT and mandatory therapy PTSD sessions. I think it would make a cancer survivors life so much easier.

    Who are you? You are Lani, and you are going to live. And, you are wonderful and funny and amazing. You are strong and if the beast comes back you’ll deal with it then. But now? You have a life and vacations and love and hate and exhaustion and great movies and books, and hummingbirds and sunshine…..someday you’ll tell your grandchildren about your cancer and warn them to get regular checkups. Maybe they’ll even listen.

    • August 7, 2012 at 11:33 pm

      You are SO right about the fact that the post treatment is so poor. No one thinks of it as an amputation – and yet it IS. And, it alters your body so much – never mind the psychological issues with respect to your body (which for me, I just wanted to live and so was not so attached to my real breasts) but, the aftermath of constant pain from muscles being re-routed and nerves cut and posture changed and frozen shoulders etc. – you are right – PT should be a given and treatment for PTSD should be part of treatment.

      Thank you for reminding me of what is in front of me. I too have been focused on a clock lately. Which – to the degree it motivates me to do things that are positive – then great. But, there are days where that clock looms over my head like a time bomb and it is hard to get past that. But, you are so right. It diminishes my time to focus on that aspect.

      Thank you for sharing your wisdom. I truly appreciate it.

      xoxoxoxo
      Lisa

  7. July 29, 2012 at 3:14 pm

    I wish I could hug you right now. There is no way to explain to someone who hasn’t traveled our road how it feels. People are for the most part well-meaning when they say, “You beat it! Now you can get back to normal. Why aren’t you happy about that?” Things are forever changed–physically, mentally, emotionally, spiritually. It’s been 7 years for me and my oncologist is thrilled because she thought it would recur long before now. Just like during chemo I take one day at a time and try to savor every good and beautiful moment I can find. Some days it’s easier to ignore the shadow of recurrence than others. On the difficult days just keep moving forward until the darkness fades. ((HUGS))

  8. Sandy Kugelman
    July 29, 2012 at 5:49 pm

    Oh Katy, it’s not that the poster above you doesn’t get it. She said she has metastatic disease. That’s Stage IV- everyone’s worst fear. I know just what she means. Maybe this will help in a weird kind of way. I started out Stage II and had a recurrence three years later which was Stage IV. (Hang on. The hopeful part is coming.) While in my earlier stage treatment, I voraciously read everything I could get my hands on, I strategically avoided anything labeled “Stage IV” or “When cancer spreads past the breast”, as these chapters were typically the second last chapter of every book, followed by “End of Life Issues”. I was like, “Uh, no. I am so not going THERE.” Well, I am here to tell you that I wish I had met more Stage IV women prior to getting diagnosed because when I did, the raw nauseating terror was palpable. All I knew was that you get Stage IV and then you die. So allow me for just a second to entertain your worst fear. You get Stage IV. What would happen? Well, it would suck and then you would deal with it. You just would. When I hear people talk about kicking cancer’s ass, I know that they aren’t in the same game as me because I won’t ever kick cancer’s ass. But I will tell you this: I have been LIVING with Stage IV for EIGHT years, in perpetual treatment. I am a single parent. I work full time. I have wonderful friends. I have dogs and chickens and I have a life that I absolutely love. Sometimes I’m really afraid, but “beating cancer” to me does not have anything to do with my physical state. Beating cancer is about living today, in spite of the fear that sometimes rears its head. My advice to you is to allow yourself to be in a state of denial as far as the chance of having a recurrence. Yes. There is nothing wrong with this. Say to yourself, “Chances are it won’t come back.” I’m not saying that you should ignore the possibilities of a recurrence, but if you can find a way to put it on the back burner and allow it to be out of focus, then I think you can find a new equilibrium. Your experience has changed you forever, but it doesn’t have to rob you. Cancer is not who you are. Focus on what your purpose here is on this earth and your focus will naturally shift away from the fear. Hope this is in some way helpful in some way.

  9. Sandy Kugelman
    July 29, 2012 at 5:52 pm

    Also, I wanted to share this link with you. It’s an interview I did a few years ago for a local news station and I talk about the “new normal”, which is the point I was trying to make in the terribly rambly post above :). http://www.youtube.com/watch?v=VXpVJtfLYn8&feature=g-upl

  10. July 29, 2012 at 11:24 pm

    That shadow just can’t be ignored, can it? We live with it every day, but I am comforted just to know that I can talk and write to others who understand, who REALLY understand! You’re right: there is no new normal. Who came up with that expression anyway? xox

  11. July 30, 2012 at 3:54 pm

    Lani,

    It’s understandable how you feel. This is an excellent post, and you raise a really good point — there is no normal. As I think about this, there was probably no normal before breast cancer, too. It was life as we were used to. The key is to keep living and move the Sword of Damocles away from yourself a tad. I’m trying, too, and it’s very hard.

  12. July 31, 2012 at 12:19 pm

    Yes. I get it. I feel it too. I think the hardest part is that society wants us to reach an end of breast cancer. Where it’s all done and life is just supposed to return to normal. I’m learning there really isn’t an end is there? Only the passage of time. Things shift and change but we’re never really done with it, and we never really reach the end.

  13. August 2, 2012 at 1:55 pm

    thank you all for your empathy and wisdom. i think more needs to be done to support us through treatment and beyond. i am grateful to have a great survivorship clinic at my treatment center. i plan on continuing to make good use of it.

  14. August 7, 2012 at 11:51 pm

    Oh Lani,

    I so relate to every word of this post. I especially relate to the part about being reliable. I too have days where I feel like my old, before cancer self – at least with respect to my focus and ability to handle the day, my work, schedule, kids’ schedules, family stuff and then there are days where I am right back to some weak place – like it hasn’t been three and a half years since I was diagnosed. I am so tired and unable to continue with my day, so wiped out.

    My favorite (NOT) thing that people say to me when I tell them I am frustrated that I can’t remember something or that I am so tired is “Oh I forget stuff all of the time, it is called getting old”

    Give me a break. I was sharp before this and I miss that sharpness. I still have it on my best days, I still can come up with things fast on those days. But, then there is a fog that settles in and takes me right back to how I felt when I was in the midst of treatment.

    I don’t know if it is PTSD or simply just being too fried from returning to my old life (and trying to measure up to everyone’s expectations – how do you tell a kid that the movie you were going to take them too – that they have been waiting all week to see – isn’t going to happen because you are too tired to go?) You don’t, you go, because I will be damned if I let them down. But, then it has to give somewhere, from some other place in my life. And that is so frustrating – I feel like I am being whooped by it all of the time and the most frustrating thing about it for me is the inability to be reliable, to not know with certainty when I am saying yes if I will in fact be able to do it.

    I used to pride myself on being reliable, the person everyone could count on. I like your suggestion of being “gentler” on yourself. I am going to borrow that and make it my mantra. It is against my grain to say no when asked to help, against my grain not to be “in it” 100% . . . that is what bugs me the most. Sigh.

    But, we are here and have much to live for and to do.

    I wish you peace of mind . . . I know it does not come easily after all you’ve been through . . . I have not yet found it. That unknown, seemingly ticking time bomb looms. But, then I am encouraged by those days where I don’t think about that clock.. A whole day of not thinking about it, not being reminded of cancer. A day at the beach for example. I had one on Sunday and it was good. Of course carrying things back to the car was nearly impossible – damned lymphedema – but a 12 year old picked up the slack for me and we all made it back to the car . . . so Sunday, life was good. Today? Well, that is another story. But, I am going to work on having more days at the beach – if only figuratively.

    All the best to you and THANK YOU for putting into words what I am feeling/have been feeling. I posted your post on my wall in the hopes that family and friends will “get it” . . . so thank you.

    XOXOXOXOXOXOXOXOXOXOXOXO

    Lisa

    • August 11, 2012 at 10:26 pm

      Lisa, we keep finding more in common. Yes, let’s be gentle on ourselves. So hard. I have been struggling with lymphedema too. It does feel like such a setback.
      Sending you huge hugs. xoxo

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