Struggling.

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March/April 2010.)

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a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.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.

Crossposted on Toddler Planet.

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15 Responses to Struggling.

  1. Kayleigh says:

    You have given voice to so much of what I feel, it is uncanny. I am so deeply touched by this post. I have had one dance with cancer for the past year, I cannot imagine more. You are doing so much, doing all you can, doing more than I imagine I could. I understand the cut off from intimacy, that inclination to withdraw a little and not reveal the depths…not go there It’s okay. Do it however you need to.

    I’m on the east cost, NJ to be specific. I have two kids, 8 & 3. I don’t know where you are but if you are nearby at all, email me. Email me if you want to anyway.

    Thank you for sharing this so eloquently.

  2. Liane says:

    Your children are lucky to have such a loving mother. I too have felt the fear, especially in relation to how this will effect my children. As mothers we are supposed to be able to fix things for them. My heart goes out to you and I am sending you all of the healing thoughts that I can muster.

  3. Spruce Hill says:

    I feel the same way. I feel lately that I don’t have much to say on my blog. I am scared and do not know what is in my future. All I can do is sit back and wait to see if the chemo is working on this cancer in my body, that decided to come back. I feel like I am emotionally struggling too. Trying to keep it all together for everyone else. It’s a hard job.

  4. marty says:

    Do what you need to do. The internet isn’t going anywhere.

  5. Thien-Kim says:

    Thank you for sharing Susan. I have no idea what it’s like to be in your shoes. But I’ll be here to listen whenever you need. I’m also up late at night (supposedly working). So if you can’t sleep and wanna chat about whatever, I’m usually around.

    Also, if you are in need of some meals, I’ll be happy to drop some off. Do you like Vietnamese food? I promise no American casseroles. 🙂 Just let me know.

  6. Stella Davis says:

    You are keeping your part of the bargain. We are keeping ours. We will check on you and watch your kids (I so would if I was nearer) and make playdates and promise to bring meals once they’re needed. You are keeping it real. Withdraw. Fine. Own it. You do. Share your confusion, anger, fear and sleepless nights so we can walk in your shoes even if only for a few brief minutes.

  7. a brewster says:

    Most of the time, I live in denial. But there are times when I feel exactly what you describe. I worry that I am going to hurt the two people I love most in this world, my 4 year old daughter and my 6 year old son. What helps me at these times is to watch them. They are strong. They will be ok. My goal is to love them so hard that it becomes imbedded in thier psyches. So that when the time comes that I am no longer with them that they will still feel like they are lucky loved children. They say that much of a child’s outlook on life is a result of the years 0-5. I am counting on it. And if they will be ok, then so will I.
    Thank you for putting into words what so many of us have felt.

  8. Jennifer says:

    Admitting you’re struggling isn’t a sign of weakness. Your strength is crystal clear here – as it always has been. And those struggles – the anger, the fear, the questions – they’re real and they’re part of your story. We need to know so we can be there for you – even if it’s just for us to let you know we’re thinking of you.

    Every day you are in my thoughts and prayers, Susan.

  9. Yes of course you are struggling..Three times is not a “charm” when it comes to cancer. And even though you say you are withdrawn, here you are, putting your anxieties and fears down for all of us–some have been through as much as you, some of us fear the recurrence that you have now experienced twice. How amazing you are to touch so many people with your words. Thank you. Know that you are thought of and prayed for by this huge community of people, myself included, who have never met you but feel that they know you. Fran

  10. whymommy says:

    I’m here, listening to your comments. Overwhelmed to say much else. Thank you.

  11. widepeak says:

    once more i feel grateful for your voice that reaches so far over here. i send you my love

  12. lahdeedah says:

    Susan,

    I admit it. I checked out after we lost Katie and Jenni. I simply couldn’t bear the thought of losing another friend. The truer statement, though, is that I couldn’t bear the thought of my own mortality; the excrutiating thought that I might have to leave my children, my man, my friends, the mountains, my bike, music, the power of language…before I am ready. I wanted to take my battered but evidently healthy body and run. Far away from cancer.

    However, a not-small voice has started to speak out to me through this blog. Through your post and Miss Spruce Hill’s posts. I want to support you. I still need your support. I left in fear, leaving a brief comment now and then to connect in some small way. To not be forgotten. And I am ashamed to admit that.

    The truth is, cancer is never far from me. It’s ever present. Your post today spoke to me in a powerful way. I am you and you are me. And I’m happy to admit that.

    I can’t make any promises about my participation here, as I am working upwards of 60 hours a week to keep my job. But I’ll be reading and praying intently.

    Much love,

    Jill

  13. zach says:

    Just enjoy the precious time with your love one.
    I feel really sorry for you…
    I feel it too now, as my only son suspected with DMD.
    He still so young, 3 years old. I will fight for the cure.

  14. Courtney says:

    Susan,

    Thank you so much for posting this. I just stumbled upon this website and I’m so grateful that you’ve been able to put much of my own feelings into words. I’m a mother with two children, ages 4 and 7, and until I found this site, it seemed like everything was geared toward middle-aged women who were already through with this phase of life. (Not that it’s any easier when you’re middle-aged, just different).

    My double mastectomy is scheduled in two days and I’m obsessively cleaning everything, setting up playdates and “cognitively stimulating” experiences for my children as well. I power-washed 1,000 square feet of concrete yesterday because it seemed like the thing to do. I have checked and re-checked on every step of this process–from the pre-authorization with the insurance company, the disability paperwork, the scheduling (with both surgeons AND the OR), and the admission process with which I’ll obtain a bed in the the hospital after the surgery. I couldn’t put it into words but I definitely think you’re right….it’s an attempt to control the one thing I can’t control…the cancer. As an RN I’m familiar with the ins and outs of the health care system–but if anything this whole situation has made me realize that being a patient SUCKS!!!

    You are allowed to struggle! You are an amazingly articulate person and you’ve helped more people than you’ll ever know with this post. God bless you and your children…they are lucky to have such a devoted mother. Hang in there!

    Courtney

  15. Maria says:

    There is a camp for kids with parents with cancer called Camp Good Times — it is free, I think, and near Rochester, NY.

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