Looking on the bright side

is exhausting.  Too exhausting.  As I’ve gone through the week, I can’t help feeling that my last post here was not altogether honest.  I have always been honest with this blog, as otherwise, I don’t see the point, and I tell what I can so that others can understand what it might be like for their friends who have cancer, but some days I don’t have the energy to put in that magical little twist where everything turns out ok, because I know how to cherish the moment, or because I realize that I now have days that I wouldn’t have if I weren’t so lucky and the medicines so good.  I want to be grateful for this day.  I do.  And, sooner or later, I realize that I always am grateful, and I try to capture those moments here along with the frustrating and tiring and sad parts, because life is always a mix, and life doesn’t end the day you hear the words, “You have cancer.”

But this last week has been pretty awful.  Several of the last weeks have, actually, and it’s pissing me off.

The pain is under control. I’m on good medication, and I almost always take it on schedule.  That helps, and I have the warm pool in the sunroom now to help soothe my aches and pains every night and when I get behind on the medicine or it just isn’t enough.  But the meds — a weekly chemo, a monthly infusion, two pain pills, one to help with menopause, and two to sleep at night — all put me to sleep, and I’m so very tired.  I can’t tell whether it’s from the meds or from the general weakness of, you know, fighting cancer, and so I can’t tell when it’s ok to take a 5 hour nap and when I should power through for another bit.   I know, I know, it’s always “ok” to nap — but it doesn’t really help me get anything done, ya know?

I’ll post again soon.  There have been joys — seeing the kids adjust to school so well, watching Widget play soccer and seeing him raise his arms jubilantly as he runs back down the field after scoring a goal, cuddling Little Bear when he asks, and listening to his great stories of the games he plays with “the spy kids” at junior kindergarten.  I joined a new prayer group today, and I am thankful for them already.  My parents-in-law are visiting this month, and I am so grateful for their company during the day.  They are such a big help with the wash, the errands, the house, and the children, as my parents are when they visit too.  My parents are doing well and having fun, traveling last week, and I’m happy for them.  My husband — oh, you know, he’s perfect in every way, especially as far as the internet is concerned!🙂   So there are good times, and good moments, and when I read the children to sleep or greet them with milk and cookies when they come in the door from school, I am so grateful for life.

But in the hours between, the times when I must sleep the morning, the afternoon, or both away to restore my energy or reduce the pain, it’s hard.  I lie on the bed, reading or gaming or watching tv, and I feel absolutely rotten that I can’t do more.  That I can’t be of service more.  That I can’t drop by the school or lead cub scouts or run around with the kids at soccer.  And I lie there, and wait for my body to be restored so that I can get up again and do the little I can, and I feel rotten.

But I don’t write about those parts, because what can I say?  Cancer sucks?  Having cancer cells replace healthy cells in your spine, hips, ribs, and legs makes those parts hurt?  I’m tired of resting?  How ungrateful of me!  How rotten, when I am so lucky to be alive when so many of the friends I’ve met through Mothers With Cancer are not!

So I lie quietly, and wait “for my energy bar to fill up again,” as the boys say, in the language of video games, and I try not to be a bother as people hustle and bustle around me, doing my work, taking care of my children.

But still, it is exhausting.

58 Responses to Looking on the bright side

  1. katstone1 says:

    Thank you for sharing the truth with us. You don’t owe anybody a “magical little twist”.

    Your post, your words don’t seem ungrateful at all. Just honest.

  2. Oh hun, you’re allowed to feel these things, you’re allowed to be honest. For if we aren’t honest about the bad times as well as the good, who will be? I can’t be a cancer cheerleader, I won’t be, and if people don’t like that about my blog, they’re free to hit the X on the upper right side of the screen.

    The truth is that cancer DOES suck, and what it takes from us, even as we live day-to-day, sucks.

    Love you oodles, Susan, and wish this all wasn’t so . . . . well, sucky.

  3. Every human being has a hard time looking at the bright side. Most of whom aren’t fighting a battle for their own life with a body that has turned against itself. You wouldn’t be human if it weren’t exhausting. You are a remarkable person, and we appreciate your honesty.

  4. magpiemusing says:

    Love to you, Susan, always. Your honesty, your grace is astonishing.

    And yeah, I wish it wasn’t so sucky.

  5. Mary says:

    Thank you for your post. This is your blog and you should do whatever you want with it — I think your readers appreciate your honesty about what is happening to you and if there isn’t a magical happy twist, while we wish with all our hearts for the magical for you, we want you to say what you need/want to say about whatever that reality is.

    Also, doing the wash and the driving and the cooking and the whatever other energy draining stuff you might think of is not raising your children, YOU are raising your children every single day, the help with the other stuff sucks because you don’t want to depend on others, but have no doubt that others are not raising your children.

  6. […] yet I still wish so much of the time that I didn’t have this crappy cancer. As I said in a comment on Susan’s blog, Toddler Planet: If we aren’t honest about the bad times as well as the good, who will be? I […]

  7. It is important that you share what you need to share, the crappy and the good. And we will be here supporting you through both.

  8. Stella says:

    Knowledge Is Power! You began this journey knowing that and sought to educate. Well, you can’t just educate about the positive while glossing over the ugliness of the cancer experience. Full disclosure (if it won’t hurt the one’s we love or leave behind).

    And doesn’t it just feel good to say the words, sometimes? Cathartic?

    We all know you’re not looking for sympathy, just understanding and acceptance. You have oodles of that, my dear. Oodles!

  9. Amanda says:

    I don’t think you can get mad at yourself for being human. It isn’t ungrateful, it proves you are still living.

    Sending love.

  10. Stimey says:

    I think that if you are unhappy or resentful or angry or anything else like that, it doesn’t mean that you aren’t grateful. Just as sometimes we complain about our children, but that doesn’t mean we don’t love everything about them with all of our hearts.

    I can’t imagine what a burden it would be to have to be positive all the time. Don’t feel you have to. You can let the frustration out with us so you have that magical twist for those kiddos of yours.

    I love you. So much. So, so much.

  11. Michelle Baker Willis says:

    It’s OK to get pissed, and it’s OK to rest. Think of that time as an investment in your future and your family’s future. If you take the time to rest now, you’ll give your body what it needs to fight on another day. You’ll bank up the time and energy to keep on trucking tomorrow and the next day and the next…

    Who cares about the laundry and the dishes and the dust? Let your loved ones handle that for you. They’d do anything to help you keep fighting. If they could take on some of the pain or the exhaustion or the general yucky feelings, I bet they would. Since they can’t do that, let them do the other things and don’t feel bad about it. If I could bottle up some of my boys’ energy, I’d send it to you right now!!! Since I haven’t figured out a way to do that yet, I’m sending you giant, gentle, virtual hugs.

  12. Just you being you, lifts me up! Here’s to a quick energy bar fill up!!

  13. As a psychologist I can tell you that trying to force yourself to feel something else and to suppress what you are really feeling is in itself physically and psychically exhausting. You don’t need to expend that extra energy for our sakes. I agree with Stimey: you can have opposite feelings at the same time: gratitude and rage. It makes total sense. And your readers can understand that.

  14. You are so many wonderful things, Susan… and we all know that you are most certainly NOT ungrateful. You are a blessing, just by being who you are, and being generous of yourself with those around you.

    Rest, and just BE. We could not possibly ask for more!!!

    xoxo CGF

  15. Linda Lawrence says:

    We are grateful when you are honest.

  16. Susan, I’m so glad you’re still being honest, even when it sucks. And some days it just does, in ways I know I can’t claim to know about. It pisses me off that you are suffering so, and that’s a good thing. It’s good for me to be pissed off, so I don’t take my life for granted and I don’t stop scrapping even though I could. Deadline 2020 is more important for me than ever. Keep focusing on the things that matter to you, and don’t worry about what you can’t do in the advocacy world. I promise you I’ll get that covered. I’m not there yet, but I am growing into it. For you, and for the others who are fighting. I promise.
    I love you, sister.
    Elizabeth

  17. Brandie says:

    Honesty about it all? That’s what draws people to your blog, to read your words. Cancer sucks and I think it’s okay to acknowledge it and share it. It doesn’t make you any less grateful for what you are given. It makes you human. (((hugs)))

  18. nancyspoint says:

    I agree, looking on the bright side can be quite exhausting. You don’t need that burden. Go ahead and be honest about it, here on this blog anyway. Here there is no judgment. Here there are no expectations. Here there is no need to pretend. As you said, sharing honestly so others can understand is the whole point isn’t it? I want you to share honestly. I want to understand.

  19. carosgram says:

    It’s hard to be upbeat when you are exhausted, even when you are not battling disease. That is why so many new moms get depressed right after the baby arrives. They are just physically exhausted. I hope your energy bar is filled up quickly so you can enjoy being with your family. Thinking of you and wishing you the best.

  20. jaydub26 says:

    You should never feel you have to put the magical twist – the honesty of the gratitude, joy, pain and despair. That is the real story of you and your journey with cancer and that is the one that all of us want to hear – Hugs across the ocean, my friend

  21. Of course you can vent, and express frustration, because with every word you publish, you are loving and grateful and positive. Even in your darkness, you ALWAYS give off light. I do not know another person so appreciative and generous of spirit. Really. Even when you are not on the brighter side because your battle is *so hard*, you are still pretty damn bright.

  22. I don’t have cancer, but I live in constant, grueling pain.. . and it sucks! Your words bring me joy and the will to try harder. I don’t know you, but read every single post. So be angry! It’s ok with me and apparently the other readers who love you so very, very much. As always, I am praying for you. Blessings, Penny

  23. Donna W says:

    Thank you for being someone I can trust to tell the truth, even when the truth hurts. You go ahead and be yourself.

  24. Bon says:

    love you. and your honesty.

    yeh, you make it easy for us, often helping us – and hopefully you – to look on the bright side of hard things. in doing so, you humanize things that frighten us, and make us better: the lessons you teach will percolate through all of us, hundreds of us, all our lives. seriously. but that not every moment has a magic little twist? that’s an important part of that teaching. it’s good that you’re honest.

    and maybe by receiving, by hearing, listening, we take a little of the weight? i wish. i wish you energy, healing, less pain. time to write.

  25. I can’t really say anything more than what Bon said above, other than that I think of you often, Susan. And I’m sending you all the strength I can.

  26. You are the LEAST ungrateful person I know. I’m sorry you’re tired and in pain and fed up. If I possibly could I would be there to do your laundry and clean your kitchen and chat when you feel like it (heopfully discreetly so you don’t even notice things are being done for you, but you just never feel the need to do them yourself). Huge hugs and much love from me. I hope your energy bar fills up again soon!

  27. Mom101 says:

    Oh Susan. I can’t even imagine what you’re going through. But I know that sometimes it’s okay to say Cancer Sucks. Sometimes it’s okay to say “I’m hurting” and not apologize for it. Sometimes it’s okay to tell the truth.

    You are no less strong in light of this. And you know? Sometimes it’s okay to be not strong too.

    Thinking of you muchly. xo

  28. René says:

    I’m praying for you tonight. Sleep well.

  29. Bon said it so beautifully. And Stimey. And Jess. So I’ll give hugs and prayers that the dawn comes soon. Because of course there is much dark in your journey, but there is also dawn. Don’t worry about holding the flashlight for us in the dark. We are just here with you.

  30. NYFriend says:

    It is admirable that you find the “magical little twist” so often, far more often than many, many, many people. But life is not always magical, it just can’t be, otherwise we wouldn’t even know magic at all. (Can’t have light without dark)

    It really sucks this has happened, because I know you would have been a great cub scout leader, classroom helper and all the things I know you would have loved to have poured yourself into. But that same amazingness, that same strength that would have made you that amazing scouter leader, etc. is what has given your boys a Mom. A Mom to love them, guide them and be with them. Right now.

    Hugs to you, and wishing you new found energy soon.

  31. AnneMarie says:

    Never EVER deny your feelings and never feel like you have to explain or apologize for what you are feeling. It’s a waste of precious energy. You have a real voice and it rings true. Really, I just want to let you know that you are being heard. Likely by more people than you can possibly even imagine. I am listening and I will continue to Just Listen. I send love. AnneMarie

  32. JoC says:

    Others have said what I would already and more eloquently; yet I want to add to the chorus ‘thank you”

  33. clifford says:

    we love ya, babe. 😀

  34. Tina says:

    You’re in our thoughts…. remember you don’t “owe” anyone who reads your blog anything — you don’t owe them posts, or happy thoughts, or positive wishes. Even if you don’t write a thing, you’ll still be the recipient of all of our positive thoughts, our love and our hope… Take care of you, so you can “refill your energy bar”! Hugs!!!!

  35. Jill UK says:

    Thank you. It helps me understand what I believed my Mum was feeling, but didn’t express to me.

  36. You are not the Hope Ambassador or the Hope Police for that matter, my friend. It is not your job to always encourage everyone behind you on this path or a path with similar struggles to see the shiny, happy all the time, unless that’s the job you choose. You are not responsible for your sisters losing hope or faith or courage if you are honest or say the tough truths of where you are today.

    I love you very much. You make the decisions.

    • AnneMarie says:

      That is a very “to the point” way of giving voice to every single person who feels like it’s somehow their responsibility to continue to wave the pink ribbon.

      “You are not the Hope Police.”

      I have somehow become something of an volunteering advocate but it’s quickly morphing into an activist advocate and if you see I stole your phrase to help more people to understand it’s OK OK OK to feel like not smiling for the sake of the world, pls forgive me if I forget to acknowledge your name. No kidding here (I forget lots of stuff)…. I won’t ever forget that I got it from you…….

      That is a very powerful message. It packs a good punch. It will make people stand up and LISTEN because as patients and survivors, sometimes, we just need to be heard. And some people are too busy talking to actually JUST LISTEN! You are a good friend.

  37. Aunt Pat says:

    Hi Susan,

    I know it’s hard when you can’t do the things you want to do . I get very down when I feel that way. I wish I had your courage and strength. I think of you everyday and you are always in our thoughts and prayers.

    Love You

  38. I don’t know what I can add that hasn’t already been said above but love you for your honesty and the way in which you tell your story to others whether it’s about the good days, painful days, and all the times in between. Sending all the love in the world!

  39. Kathi Kolb says:

    Susan, if you didn’t feel like this sometimes, I’d wonder about your sanity. And you are one of the sanest people I know. As a scientist, you know that every thesis has its antithesis. Our lives, especially when we have cancer, is about contradictions and contrasts. How else do we see the light if we don’t acknowledge the darkness? That’s why I get so impatient with those who insist on positivity all the time. It’s just not real or true or helpful.

    Your candor is one of the things your friends love and value. I wish there was less pain and fatigue and anxiety in your life, but I’d never wish for less of your candor. Much love to you.

  40. Claire Celsi says:

    Sending good wishes and love from Iowa. You touched me today and made a difference. Thank you.

  41. Jan says:

    Thanks for your post. You do what you can, when you can, and that is all anyone expects. If you can only do a little on some days, it’s ok. It is enough. On the days you can do a lot, that is ok. The important thing is that your boys know how much you love them – whatever condition you are in on that particular day.

  42. Lahdeedah says:

    Just love and prayer.

    xo

    Jill

  43. Blue Morpho says:

    These words resonate so strongly:

    “I lie on the bed, reading or gaming or watching tv, and I feel absolutely rotten that I can’t do more. That I can’t be of service more. That I can’t drop by the school or lead cub scouts or run around with the kids at soccer. But I don’t write about those parts, because what can I say? Cancer sucks? I’m tired of resting? How ungrateful of me! How rotten, when I am so lucky to be alive …”

    The words of those with a host of illnesses, mental illnesses included, who want to do more, and simply can’t. Can’t. No amount of willpower or positive thinking makes it not suck. So write about the parts that suck, too. It does not all have to have a lesson or happy ending. Some times it hurts to much. And that is the truth for all of us. The tough stories are just as much a part of this as the uplifting ones, and as we blog our experiences, we bear witness to all of it.

    Adventures in Anxiety Land

  44. Ellie says:

    As an adult child who lost a mother to inflammatory breast cancer, you never sound ungrateful to me. You never sound negative, or rotten, or hurtful. What you are dealing with is painful, tiring, and nearly all-consuming. If anything, I admire your strength and grace and ability to remain open and loving despite everything. Please don’t be afraid to let the less than magical parts show, no matter how many or how non-magical they are.

  45. Thank you. I’m just so tired. Bone tired, tired that rest can’t heal, and I feel like the days are slipping away. Is it worth it? That’s a question I’ve been asking, and I just have to answer it every day.

    But I hate more than anything disappointing people, like my mother-in-law today, who wants to go shopping, but my bones cry out for rest and eventhough I just woke up, I know that I must sleep again.

    I told her – you gave me the courage to tell her – that I just can’t, and she understood, and she tucked me into bed with water and a homemade brownie, as she went for her morning walk.

    I pray that people understand

  46. Deb says:

    I don’t think I’d very good with feeling tired and in pain all the time. I’d be a bitch actually. I know that. Take care woman.

  47. You are the bravest person I can think of. I appreciate your honesty. It helped me during my radiation treatments.

  48. Megan says:

    There is a duality that I recognise; when I was in chemo I wanted to protect others from the black times, but also had to be honest – telling the truth hurt, and not telling the truth to others caused hurt too. Likewise trying to be upbeat about the future, whilst considering what the outcomes might be. If you were the carer, you would give willingly; it can be harder to accept help. You are fighting on all fronts at the moment, keep your energy for the things that really count, the things no one else can do – caring for the people round you and helping your body heal. For me, my bones stopped hurting within days of taking curcumin; I hope you find something that turns things round for you.

  49. PrincessJenn says:

    You are quite possibly the most inspiring person I’ve ever read. I’m amazed by your bravery in painting such an honest picture of life with cancer.

  50. Karen says:

    Lots of hugs and prayers Susan

  51. Jana A says:

    Sending you so much love and even more prayers. ((hugs))

  52. Anne says:

    I’ve done a little bit of study on pain medications when I did a course on addictive drugs, I ended up doing my final presentation on pain management. What I learnt was that the same mechanisms that cause addicts to seek more and more of a drug to get a high will also mean that the drowsy side effects will reduce in a fairly short time, it’s usually longer than people need to take medication for after surgery but not too much longer and it’s the drowsiness that goes quickest, nausea usually reduces, though there are effective medications for that, unfortunately constipation is the one thing that doesn’t change much with time. Pain killing effect does reduce slowly, but as in many long term usage situations pain is increasing it’s hard to say which is happening for any given person. The good news is that unlike tylenol there isn’t a maximum dose and the drug companies produce tablets with very high doses so you don’t have to deal with taking loads of tablets.

  53. Susan, you are such a gifted writer. I love the sentences below.

    So I lie quietly, and wait “for my energy bar to fill up again,” as the boys say, in the language of video games.

    It’s such a good description and reflects that indeed you are the Loving Momma to sweet little boys.

    Your transparency is a gift you chose to share with us.
    It’s exhausting~it simply is and having you explain it gives me one more lesson I didn’t know.

    Keeping you in the LIght Susan,
    Lisa

  54. Hey Susan,

    This is going to sound random … but just couldn’t sleep so got up and started playing around on the computer. Snooping around your blog, and I have a question. A question I will probably be sorry I asked cause I flunked physics in college. But what, pray tell is Observation of Energy-Dependent Electron-Capture Decay in Galactic Cosmic Rays?🙂

  55. Susan, the sleeping thing … it’s a part of what you have to do to still be here. So do it🙂 I think you should just keep getting up when you can without feeling too, too horrible. Milk n c ookies, nap, story time with the kids, nap …. (a video game here and there). Preschoolers get to do it, so why shouldn’t cancer warriors get to?

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