Struggling

I admit, I’m struggling.

I suppose it’s not uncommon for a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.

I know it’s not uncommon for us to withdraw into ourselves or close family, to concentrate on the logistics of cancer diagnosis, the testing, the treatments, the side effects, the complications, the procedures, the planning appointments, the specialists, and the treatments to come.  That’s normal, right?

But I’ve been surprised a bit at how this all has gone down.  I am relying more on my nearest and dearest, setting up playdates nearly every day (even though many of them fall through because of illness, mine, theirs, or kids), cleaning the house obsessively (because God forbid it be out of order should someone drop by; they might suspect I’m struggling), spring cleaning and changing out the winter clothes for summer (labeling bins so that the change back for fall is easy for whoever does the chore, since I don’t know how sick I’ll be then), setting up summer activities to distract and engage the children, offering to watch others’ kids when possible (since I’ll need them to watch mine), joining a church again at last (I need to have a family of faith, since I was so disappointed by the brush-off that I got from my pastor last time I was in treatment, homebound, worried, and desperate to understand), paying the bills (and setting them up for automatic payment), calling contractors (to paint, to rewire, to fix the gutters, things I’ve put off for months or years), giving away outgrown toys and reorganizing the lego and playmobil sets that march across the playroom.  Mundane stuff, right?

Isn’t this the time that I feel so blessed to have caught the cancer early enough for simple treatment?  Before it went to my bones or brain?

Isn’t this the time that I spend all day snuggling my children?  (Actually, I do.  I spend all day snuggling and reading to my children.  And then when they go to school or play independently I clean, so I can snuggle them more when they come back.  This is not the way I used to do it.  I used to work when they were at school, and teach them to clean with me (among many, many other things) when they were at home.  But I can’t concentrate on work and do a good job right now.  Luckily, the laundry doesn’t require much concentration.  I have control over the laundry.  I don’t have control over the cancer.)

Isn’t this the time that I reflect, here on the blog, and share these thoughts with you?  It is, isn’t it?  But why have I not been able to write real, intimate thoughts like this with you lately?  Why am I so quiet?  Why can’t I sit here and tell you, once again, like I pledged in 2007, to tell you what it’s really like to be a cancer patient and survivor?  Am I ashamed to tell you that this time it’s not as easy?  That some days, I don’t know how we’ll get through it?  That I rage against the cancer in private?  That I sink into my bed, seeking comfort?  That I still have no answers for why this all is happening to me, and I search my past, wondering if it was something in the physics building at college or graduate school, wondering if it was the work I did in the clean room, marshalling van der waals forces to move nanoparticles from needle to needle, or those years with the mass spectrometer, where I was the only one to consistently wear my radiation monitor, even though it showed only low levels?  That I wonder if the cancer was caused by the mercury spill that I worked next to for four days, because I didn’t know it was there and the technician didn’t want to be bothered with cleaning it up?  That maybe if I had become a writer, or a microbiologist, or something on the other side of campus I wouldn’t be sick today?  That then I feel ashamed for questioning, because surely all the research labs I worked in and was surrounded by followed standard radiation protocols and were safe for students and researchers?  That I know that I can’t blame myself for contracting inflammatory breast cancer, Paget’s, and infiltrating breast cancer (if that’s even what it is), but yet, some days, I still do?

Isn’t this the time that I feel grateful?

I want to feel grateful.  I want to feel that grace that came over me last time when I realized how close a call I had.  I want to write words of hope and strength and coping here, so that others may see that the fight is not hopeless and dismal.  I want to reach back to so many who have reached out, on this blog, on their own blogs, on twitter, and in person, dropping by or taking me out, helping me laugh again.

I love it.  I love you.  I do.  And I appreciate it so much more than I have been able to say.

I haven’t been able to say it.  Truthfully, I’m struggling.  I’m not sleeping at night (at all, some nights, four in the last three weeks, and only a few hours most nights).  I’m not eating, but I’ve gained 14 pounds since my medication was switched in February.  I’ve found out only this week that two additional side effects of the aromasin are weight gain and the inability to lose weight.  Nice.  Thanks a lot, aromasin.  No wonder my clothes don’t fit and I feel so crappy helping the kids scale the pirate ship or scrambling into the tunnel at the nature center.

I’m worried about my kids and how they’re coping.  I’m helicopter parenting them at school, I know, but I want them to be in a place where there is love and friendship, not exclusion, pre-bullying, and fighting games.  I’ve seen the effects of these things recently, and it makes me sick.  I’m working so hard to provide them with supportive, positive playdates to counteract that time when they are essentially unsupervised on the playground at school. I’m looking into support for families now, before it gets worse, and I’m calling on resources from the American Cancer Society, The Wellness Community, CancerCare for Kids, and KidsKonnected to help me find out where to go and what to do to help my kids weather the stormy days as I adjust to the new treatment and recover from the surgery and its complications (the seroma is quite large, needing draining several times a week, and the draining has introduced an infection into the wound, which keeps me awake all night now with alternating hot flashes and chills, in two to ten minute cycles, for hours).  I’m looking for other resources now, finally able to reach out and ask for help, and I want most of all help for my children, to help them feel like regular kids, and to give them a place where they can talk if they need to.  I am looking.  I don’t have a link for that.  I want to find a place, though, and I am finally strong enough to reach out and ask.  Have you seen one?  Do you know a place on the East Coast where kids with cancer can relax and talk to each other or a professional about their fears?

I am realizing that I’m withdrawn, because I’m afraid.  I make plans, but I’m not sure whether I’m planning to enjoy these things with my children, or providing them a place to go when I’m exhausted and in pain from the radiation that is to come.  I tidy up the paperwork, the finances, the house, old contracts, loose ends, in hopes of regaining control over something concrete in this life.  I realize now that it’s probably because the thing that I want to control the most — cancer — is not really up to me anymore.  I have a treatment plan, with the endorsement of the oncology experts at Georgetown and Sloan-Kettering, and now I must trust it and move forward with hope and confidence.

I want to be strong.  I want to accept this with grace.  I want to just take it in stride and continue on with my blogs, my projects, my playdates, and my work.  One day soon I will.  But for now, I struggle.  I admit it.

I admit it.

54 Responses to Struggling

  1. Bon says:

    i am here, receiving, sending back love.

    i have wondered how you’ve done it all with such grace and apparent lack of struggle these past three years. i always admire your indomitable will…but i admire your honesty here too. and i thank you. because to know that you do it in spite of all that heartache and wondering and worry, in spite of the fact that it is too much, is far more inspiring, actually. that’s true indomitable will, no matter what secret doubts and struggles you share.

    i struggle, and cancer has never (yet) touched my immediate circle. but i think the whys and the hows of having been dealt any kind of major blow or difficult hand resonate for a long time in individuals, take us out at the knees when we least expect it.

    i’m so sorry this time around is harder at that metaphysical level. i hope writing it out like this is frees a bit of the weight of it all from your shoulders.

    you are doing a good job. you are loved. and we abide with you, even in the struggle. xo.

    • whymommy says:

      Thank you, bon. Yes, I agree, the resonance makes recurrence of a blow of any kind so much harder. It’s funny, though. I really thought that this time it would be easier, it would be a breeze, because I knew what to expect.

      Thanks.

  2. Amy says:

    You don’t always have to be strong.

    Is it a relief to admit that you’re struggling? I’ve long worried that you’re too busy being Super Cancer Patient and not busy enough taking care of yourself (not your medical stuff, I know you’re on top of that, but taking care of your spirit).

    I’m not especially religious, but this post reminds me of Ecclesiastes 3. There is a time to schedule playdates, and a time to unschedule them. A time to plan activities, and a time to remain quiet. A time to pay bills, and a time to let bills remain unpaid (well, or to let someone else handle them, maybe). A time to work, and a time to take a break from working. A time to sleep, and a time to be wakeful. A time to be weak, and a time to be strong.

    While I’m no Bible Scholar, I think the main point of that verse is God is in control. Just do what you can, and let the rest go.

    I don’t think you can control freak your way through cancer. I think you’ll just drive yourself nuts trying.

    You have permission (for what mine is worth) to just BE for a while. You don’t have to DO, you can just BE. Breathe in and out, and let others handle the rest.

    Just breathe.

    • whymommy says:

      Yes, yes. It’s true — I’ve tried to take care of everything and everybody, so my cancer didn’t affect anyone else’s happiness. It’s exhausting.

      • Amy says:

        I would react the same way in your shoes. I clean the kitchen when I get stressed out, you know? It’s like therapy.

        You’re so strong, even when you’re struggling.

        I wonder if you could find a good yoga class… Maybe some meditation and some time focusing on yourself would help?

        Hugs to you.

  3. slouchy says:

    of course you struggle. of course you do. you would not be human if you didn’t.

    but you are STILL managing this with more grace, forbearance, and courage than anyone i’ve ever known.

    let us take some of the load, ok?

    i hope that sharing this has helped somewhat. and what you’ve written? it’s not a failure to struggle, so there’s no need to “admit” it.

    my thoughts are with you, always.

    • whymommy says:

      No? It’s not?

      I suppose I’ve not looked at it that way — I expect to be able to deal with whatever comes my way, and to carry on regardless.

      but this? Is a bit much.

  4. Neil says:

    I think all your friends understand how hard this is for you — for anyone going through this, even between the small talk and jokes we share online. Don’t feel afraid to express some of the less socially-acceptable emotions you’re experiencing. Hell, I’m surprised you’re not fighting with everyone on Twitter, blaming them for the recurrence of the cancer. That is what I would do.

    • whymommy says:

      Ah, so I can say it’s your fault, Neil?

      Only joking. I try to be light on twitter, and engage, and use it as a hideout when I’m not able to get out and play in person. It’s true.

      But thanks. That’s good stuff, and I appreciate the reminder.

  5. Darryle says:

    Susan–If you didn’t feel exactly the way you describe here, I’d think you weren’t being honest. No one could possibly look at what you’re experiencing and expect you to be anything else other than overwhelmed and terrified–much if not most of the time. This post just illustrates your courage in communicating that aspect of cancer as clearly as you do everything else.

    I just wish you weren’t using even a drop of your energy to feel hard on yourself in any possible way. Maybe you don’t have the perspective to see what we can all see: you are human—and you are heroic.

    • whymommy says:

      Nope, just human. And scared to death to share this part of my soul. But I hope it helps someone else to admit it — this is hard. Really hard. And at times it can be too much….

  6. J.J. says:

    It’s so tiring not to fall apart! It’s okay to fall apart! It’s unnatural not to be afraid! It’s all about the balance — you neither want to live all the way on the spectrum of “Super Cancer Patient” as the first poster called it, nor all the way on the other end of the spectrum of living underneath the bedsheets, afraid to come out. You have a remarkable coping mechanism, just remember you are human. And of course you are going to go through the “what ifs” but it won’t get you any further along than where you are, which is the “what is.” Every time I’ve hit a really bad place in life, I’ve curled up inside and later friends have said, “Why didn’t you let us know what was going on so we could’ve been there for you?” So just posting this is a big thing — admitting when you are struggling is a big thing. It’s okay to struggle. And people want to be there for you when you struggle. Because we all care. : ) Struggling is okay, normal and natural. Fortunately you are still moving forward with all the good stuff too, and you are letting people into your life to help you. I don’t know if all that makes sense, but I’m trying to say I’m proud of you.

  7. Not speaking from any experience but I would think a recurrence would be harder because you DO know what lies ahead. And also, you slayed this dragon already, for fricks sake. I’m MAD for you that it has gotten back up to come at you again. It’s not a defeat, but I’m sure it feels like that some days.

    You have done SO MUCH for other people with cancer and by raising awareness. Now do what helps you. If it helps you to write here, by all means we want to read whatever you’ve got. If it doesn’t, we aren’t going anywhere. Don’t even worry about what people might be expecting of you right now.

    Also, those who carry extra weight decrease their risk of osteoporosis. So there’s that.🙂

    xoxo

  8. edj says:

    I think that occasionally falling apart is what makes it possible to go on.
    I am praying for you. I don’t comment often but I’m part of the army of friends you have.

  9. Maggie says:

    Ugh–my heart goes out to you and I’m so sorry you have to go through this. I know lots of people will shoot me down for suggesting this but I’ll do it anyway–have you talked to your dr. about either antidepressants and/or medication to help you sleep? I know when my best friend went through breast cancer treatment for a grueling year, then has been dealing with the aftermath for the past 2 years (several more surgeries, recovering from after-effects of chemo, etc) she was prescribed stuff to help her sleep and to help the depression and anxiety and it helped her a ton.

    I don’t mean to be a pill-pusher at all, but figure it’s worth throwing out there in case it’s something you may not have considered and something that may help you. On the other hand, every person is different and feels differently about medication for stuff like that, so there may well be reasons that this advice isn’t applicable in your situation.

    Anyway, I read your updates on Twitter and your blog and you are in my thoughts and prayers.

  10. Amanda says:

    I think the knowing is cruel, making you feel prepared and yet also making you dread. I know that mindset and focus are critical, but seriously, there isn’t a person here reading who would judge ANY response you had to this.

    It’s going to be different, but you, you are the constant. And you, can do this.

  11. allison says:

    When my friend’s husband left her with two kids under three, she said one of the worst things was feeling like a cliché. I understand wanting to face cancer like you clearly face everything else — with grace, humour, strength and calm. But yeah, three cancers in three years? Isn’t it a bit much to expect yourself not to struggle? Anyone would give you the permission to be selfish — not even selfish, self-centered, because you need to center on yourself and what you need to get through this right now. Please please, give yourself permission. And you ARE telling us what it’s really like to be a cancer patient.

  12. magpie says:

    I wish I could do something tangible for you. Good thoughts through the intertubes seems like not enough…

  13. Please do me a favor. Take a moment and breathe. The laundry can wait. Just breathe and know someone is sending you all her positive vibes from Seattle to make you strong.

    ~Scout

  14. pgoodness says:

    Honestly? I’d be a bit worried if you weren’t struggling at least a little bit. Seriously, you’ve been hit with a ton of crap and at some point you were bound to struggle. I think it’s nice that you’re doing so much and trying to get everything in order, but please give yourself some permission to just BE for a little while.

  15. Ella says:

    I can’t seem to write anything that doesn’t sound trite so I’ll just say we are here for you, and sending you strength and love.

  16. Stimey says:

    I can’t imagine how difficult this must be for you. I know how hard all of this parenting stuff is even without an outside threat. I cannot tell you how much I wish you didn’t have to go through this.

    I think it is so natural to react the way you are, and I have to tell you, your reaction, from the outside, is so brave, so honest, so incredible.

    You don’t have to talk about it if you don’t want to, but we are here in case you do. I personally will do anything—anything!—I can to help. I’m even available for the drop-in. And you know that’s a big deal for me.🙂

    You have all of my love.

  17. upsidebackwards says:

    First of all: HUGS. Great big sloppy ones.
    I wonder whether, expecting things to be easier because you know what to expect, and then finding out it’s not easier, has made it harder? Does that make sense? Also, the only one who is surprised that you are struggling is you. There is loads of good, nay great, advice in the comments above. I hope you find it heartening and useful.
    And I am going to try to win the lottery, because if I do I am on the next plane over, with an armload of chocolate and my sleeves rolled up to help out.
    And, last of all: HUGS. ‘Cos I don’t think you can have too many.

  18. Mel says:

    It’s funny–you talk about wanting to speak honestly and struggling to do so, and yet, I found this incredibly moving, open, raw, and honest. I think you need to feel whatever you need to feel and do whatever you need to do in order to get through this time. Whether that means grabbing control where you can get control or letting chaos reign and taking whatever you need.

  19. What would you say to a friend in your situation?

    I bet it wouldn’t be “Come on, keep at it – don’t let your inconvenient cancer impact on anybody else around you. And for God’s sake, make sure the house is clean!”

    Please try to be at least as gentle to yourself as I’m certain you would be to any friend.

    Thinking of you, very often.

  20. jodifur says:

    oh Susan, I don’t know how you wouldn’t struggle. Don’t be so hard on yourself. You wouldn’t let anyone you know be so hard on themselves. What you are going through is terribly hard, and sad, and traumatic, and scary.

    It is ok to be scared. It is ok to be angry. It is ok to struggle.

    Someone very wise once said to me the only way out is through. You feel what you feel, so let yourself feel it. There is no sense it fighting what you feel.

    We will be here. Always.

  21. First, you have to know what an amazingly strong person you are. Your attitude and outlook, even when you are struggling, is amazing and I continue to be inspired by you (and sometimes ashamed for complaining about the mundane things in my life.) Thank you for that.

    As for the control thing, boy, I wish we all had that. But we don’t, no matter our situations. Be kind to yourself. And thank you for cheering me on — it’s amazing to me you can do that when you have so much else on your plate/ xxoo

  22. Niksmom says:

    Sending you oodles of love and good thoughts, Susan. Struggle is normal even when you think you know what to expect. And being vulnerable and intimate with all your feelings hanging out for the world to read? Even scarier sometimes. You don’t owe anyone anything in terms of sharing every bump and hurdle. I know you said you would and I know you *want* to be able to but…well, dammit, give yourself permission to hide out if that’s what you need. The people who know and love you IRL aren’t going to let you disappear.

    I wish you peace and grace. You already have more strength in your little finger than so many people I know.

  23. Linda Lawrence says:

    Love you!

  24. NYFriend says:

    First just some nuts & bolts:
    Gilda’s Club Greater Washington
    In Development
    c/o Legal Placements, Inc.
    1300 I Street, NW, Suite 750 West
    Washington, DC 20005
    Phone: (202) 362-2900
    Fax: (202) 383-8926
    Board President: Nancy Huber
    Email: info@gildasclubgreaterwashington.org
    http://www.gildasclubgreaterwashington.org

    Maybe they are a good resource for the kids. My sister works at one in NY, and Noggieland is awesome for the kids! Lots of great people and programs for the entire family. It looks like the one by you is still in development, but perhaps they are up and running by now.

    More later about the rest…Big hugs to you!

  25. Jojo says:

    If there is a Children’s Hospital near you, they may have a program to help support your kids. Check the mental health department or even the kids oncology department.

    I hope the struggles get easier as time moves on. The place you are in now sounds so uncomfortable. I’m hoping for better days.

    Jojo

  26. Amy says:

    I do believe you are in Maryland, but Life with Cancer at Inova Fairfax has programs for children: http://www.lifewithcancer.org/kids_teens.php

    xoxo

  27. NYFriend says:

    I just read some of the other comments, and wow, so many great insights have already been shared with you. I heartily agree with the previous writers, you are amazing and all of what you are feeling is natural.

    I encourage you to do what feels right for you at each moment in time. If it feels right to take a long breather and nurture yourself – do it. If it feels right to get things in order so that you can ease your mind – do it. If it feels right to drop everything and snuggle up to one or all of your wonderful boys – do it. If it feel right to … you get the point. 🙂

    You are human, and that means you have the capacity to feel deeply – the full spectrum. If you weren’t able to feel this deep low, you wouldn’t have the ability to feel the great highs.

    Hang in there, you’re doing marvelously and we’re all here to support you. And take care of yourself, okay? It’s okay to do so, really. 🙂

  28. I’m so awed that you long for grace. I’m not the one dealing with having cancer for the third time and I am MAD on your behalf. I feel like anger is the least of what you should be feeling right now. Let the grace come when you’ve started treatment, when you know how things are going to go down. But now? Feel free to be mad, feel free to be hurt, and if you won’t be, I’ll be angry enough for you.

  29. wooliesocks says:

    If this was happening to me, I’d be terrified I was going to die and I’d be making sure everything was in order, just in case, because I’m like that. But I wouldn’t be able to say that because I’m also superstitious and to say it is to invite it. Makes no sense I know.

    If you weren’t struggling, you wouldn’t be human woman. You have been dealt a shitty hand and it sucks.

  30. ashpags says:

    I have no words of wisdom, but many hugs and prayers and thoughts for you.

  31. {hugs}

    I appreciate your honesty. I appreciate how brave it is to put your whole self on the page, even if it’s not the image you want to project. I think it’s easy for bloggers to fall into a character that they have created. You are still keeping it real. More hugs, and lots of thoughts and prayers for you.

  32. Amelie says:

    Oh Susan. I’m sorry that it is so hard on you this time round. Also, not that I’ve been through anything this though, but I think I understand the desire to shield others, and especially the boys, from being affected by your cancer. I don’t know any resources but I’ll ask a friend that lives in your area. Many hugs and positive thoughts.

  33. leashab says:

    I’m so glad to read you are allowing your self to admit and feel like this. You have to much to do right now to be trying to be brave and all things to everybody. Now that you admit it and feel it you will start to move through it.

    I dont know at this stage in my life what its like to have cancer but I know this. When you are at the start of anything you just dont know how you will get though it. Its all so daunting and exhausting. But In time you will know exactly what cancer you have exactly the treatment plan and you will be receiving your first treatment. You’ll do it just one day at a time.

    Your amazing, weather your being strong for those around you, sad, scared or fighting with everything you have got your amazing and always and inspiration.

    tomorrow is a new day I hope it brings you some peacexxxxxxx

  34. Alice C says:

    Whatever obligation you may have felt to speak out for sufferers of breast cancer you have more than discharged. Your job now is to focus on yourself and your family. We are all here supporting you on the up-roads and the down-roads of your treatment – and that is something that we do gladly in return for the advocacy you have done on our behalf and for your inspirational friendship.

  35. NoR says:

    Well, that’s what this blog is here for too. You are human.

    Hey, would you like an OLD “make a paper space shuttle” thing? It’s a long piece of meatier paper and you follow the directions to make a paper plane/shuttle. Email me and I’d send it to you. May be great with the kids. womanwithnoregrets at gmail dot com

  36. JoC says:

    Here to say that I hear you. I can understand why you might have thought it would be “easier” since you know what to expect and why it would in fact knock you sideways. I have continued to follow you while rarely leaving comments. I came yesterday and wanted to return and type to let you know about the warm fuzzies coming your way and to let you know that I have admired you for disclosing this struggle. You may feel like you are treading water and fatiguing but from here it looks like you are about to start relaxing and floating or even swimming again. Love to you and yours. Thank you for continuing to write.$$$

  37. JoC says:

    oops – baby added those $ 🙂

  38. Lisa says:

    Sending lots of hugs ;o).
    With love!

  39. you’re braver than I am.

  40. kgirl says:

    If this isn’t grace, than I don’t know what is.

    Everybody has their limits, Susan, even on the very best of days. You don’t have to be strong for us – do what you can for yourself and your kids, and let us haul away the crap. We can handle it.

  41. Daily News says:

    I’m so glad to read you are allowing your self to admit and feel like this. You have to much to do right now to be trying to be brave and all things to everybody. Now that you admit it and feel it you will start to move through it.

  42. Lisa B says:

    Hugs Susan.

    As others have said, admitting you’re struggling is the first step to working through it. If I was in your shoes I’m sure that if I knew what was to come, treatment wise, I’d be struggling too. It’s understandable and acceptable and we’re all here, in thought if not in person, to hold your hand and support you.

    Take time just to be. If you can’t summon the enthusiasm/energy to sort out your finances, do chores, meet friends then today is not the day to do those things. Follow your feelings and if in your heart all you want to do is watch your boys play then that is what is best for you at that time. (Remember, there are no medals in this for doing what you ought to do)

    Love and hugs from the UK

  43. Susan says:

    Chiming in late to say what they all said: it’s not your job to be endlessly happy, strong, cheerful and responsible for keeping the cancer from affecting anyone else. Your amazing strength will mean that happy, strong, cheerful, uncancer moments will pop up, some days more than others, because that’s who you are. But on other days, you’ve got a big community ready to be cheerful or strong for you, or ready to be angry and rabble-rousing with you or for you, or ready to be hear to listen if that’s what you need. Or ready to keep the noises away so you can take time to rest. You’re finding your own way through a lousy situation–and there’s no shame in the struggle. Your honesty and your spirit are utterly amazing, even as you talk about what’s hard. You rock.

  44. We’re all here for you, however you need us. Even as Neil says, if you’d like to bitch at us a bit on Twitter🙂

    And I know others have said this but don’t worry so much about whether what you are doing is right. If it feels right to you, it’s right. Sometimes taking control over all the mundane things can be cathartic when so much is out of your control.

    xoxo

  45. Aunt Becky says:

    When I struggle (which is a lot), I can’t tell anyone. I don’t know why, I wish I could tell people, but I never do. I’m not able to open up about it like I see other people do. It’s like I’m terrified that if I do, I’ll be struck down, or worse, people will see that I am weak.

    I’m so sorry you’re hurting and struggling and I wish I could help. I have shoulders and arms to hold you. Sending you love and light.

  46. […] So often, we try to be SuperMom, and I think that’s what I was doing too.  Since I wrote that post and let it all hang out there, though, I’ve received the nicest cards, phone calls, and […]

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