I haven’t slept all night.

I haven’t done anything much with the day or night, either, writing only for a few hours this afternoon while the children slept, and then taking an afternoon nap to match the morning one. Dinner with C and the children, then they bathed and came in for a cuddle to watch the new Life series on Discovery. We’re learning amazing things from that show, and it’s our one exception to the 7:30 bedtime — the children beg to be allowed to stay up to 8 and watch it; we relent and revel in the togetherness as we are wowed by the creatures’ adaptations, even as we spend our days and nights together, this is one more. One more joy; one more memory. We laugh, we learn, and then I put the children to bed, with two books and a story, made up on the spot to teach something, some unusual thing we’d seen yesterday on our drive.

Yesterday we drove up to see Grammy. We met her halfway, at the Carter’s store and the playground. We sat and talked and laughed and cried over pretzels and lemonade, watched the kids play freeze tag with other park children, wild, native creatures in their own right, and then Grammy and I went shopping.

Ever since my oldest was a baby, we’ve made these semiannual trips to Carter’s, choosing the brightly colored tees and polos, navy and brown shorts or pants, and the cuddliest printed jammies to snuggle in. This year, I’m early for the Spring/Summer trip, but tomorrow, I suspect, wheels will be set in motion for treatment to start and spontaneous trips will end.

So we shopped, and talked, and bought the brightest colors, the comfiest shorts, and the snuggliest jammies, in the boys’ sizes and the next size up, for treatment could last for 4-6 months. We bought baby gifts for newborns and newborns-to-be, little outfits for boys we consider cousins, and birthday gifts for our Florida cousins, who will turn five in June. We bought what we’ll need for the next few months, and it felt good to not have to worry about new clothes again until the Fall.

Exhausted and flushed with the rosy cheeks of little boys playing tag on a bright April day turned unexplainably cold, we hugged our Grammy’s neck and returned home, to wait.

Later this morning, we will go to the hospital, to drain the ever-larger seroma, the ball of fluid growing to fill my armpit (making it not so much a pit as a thin crease between my arm and torso), to meet with my neurologist about the tremors that largely disappeared wih surgery, against all predictions by boh oncologists, who told me not to get my hopes up and scheduled this meeting with a neurosurgeon, and, then, to meet with my oncologist and set up a treatment plan to catch any stray cancer cells that escaped the thirteen nodes or which have set up residence elsewhwere in my body.

Dissapointingly, it’s all I can think about. I swore not to waste this time before treatment with worry, but it’s an idle boast after all, as I am strong, but not strong enough not to worry, when we know it’s cancer, and we know what to expect from the grueling treatment ahead.

and so it’s 4 a.m. again, but this night I have not slept.

I stretch my arm out and above my head, grimacing as I try not to let the underside of my bicep touch the ball of fluid bulging from my side (looking for all the world like, as another blogger described hers, a misplaced breast) and the tender, bruised skin that strains to cover it. It is a constant reminder, evident even to my baby, who touched it gently not an hour ago (he is a night waker, who staggers into our room between 2 and 4 lookig for mommy or daddy to cuddle him back to sleep) and asked me “Mama, why dis bump?”

It’s okay, my sweet. It’s just a bump left over from my surgery last week. The doctor will fix it tomorrow.

And so she shall.

if you pray, today we need prayers that my medical oncologist will lay out an agressive and appropriate treatment plan that, no matter how difficult, will give me the best shot at living afterwards.

I want to be here for my babies as they grow up, smoothing their hair over their worried brows, comforting them once again after the inevitable bad dreams with a reassurring “Shhh,” and the whispered promise, “Mama’s here. It’s okay, little one. Mama’s here.”


45 Responses to Sleepless

  1. Susan, stay strong. We are all praying for you and your family. Truly we are…

  2. Of course we will pray. I think it’s perfectly understandable to have sleeplessness and worry. I think you are so strong.

    I stumbled across your blog a few years ago but only just recently remembered about it, and came searching for you. I will read regularly now. Stay strong. We’re here for you. (“Here” happens to be in Australia, in my case.)

  3. Holding you very close in my heart my friend.

  4. Amelie says:

    I wish there was someone who could soothe your worries and cuddle you back to sleep. (If only it were that easy.)

    Hoping for a successful treatment plan.

  5. Anna says:

    Dear WhyMommy,
    You can’t sleep. Your worries are even larger by night than by day. Even well known worries, turned round and round by day, seem suddenly colder, darker and bigger by night. Everyone is sleeping and you feel alone.
    I feel with you – I am awake (from my own sleepless night), because here where I live, it is day already. The sun is up and very bright, noises are back, everyone awake – and the worries, while still here, are back to their well known size and shape. When your day starts, your worries will still be there too, but I wish you that they won’t be as haunting, that they will seem manageable, and that the life around you will make it easier to see past them. Have a good day, Susan, and then, when everything will be clearer, have a good night! Anna

  6. Oh Susan, I just can’t imagine. I really can’t.
    I am praying for you whenever you come to my mind, for peace, for strength and continued hope, and for your sweet family as they walk with you down this difficult road ahead.

  7. Tracy says:

    Will pray for the most effective, aggressive treatment
    and the shortest possible distance between here and health.

  8. *m* says:

    I hope that you will sleep better tonight, with a strong plan firmly in place. It sucks eggs that you have to deal with this again — but you can and you will. Thinking of you and your boys every day.

  9. Amy@UWM says:

    Anything referred to as a “procedure” is usually worth a little worry. Cancer treatment — yeah that too. Best of luck today.

  10. Viki says:

    Good luck to you today. Keep the faith and keep hanging in there.

  11. I don’t post comments often, but please know you are in my thoughts and prayers every day.

  12. donna says:

    I swear the bad news comes in bunches. My friend just found out her chemo stopped working and it was the last in a long line of crap, and like you — she has been thru the mill and then some—but she is facing some tough decisions. Of course it is all you can think about. We watched the same series and making memories can take priority any day of the week.
    You bring out my momma bear tendencies–would love to just hold you safe and keep the bad stuff away. You are young–it can be amazing what one can come back from.Still– No one should have to go thru this. Hang in hang in. You know so many care about you and yours. Hugs.

  13. Dawn says:

    I pray without ceasing for you.

  14. D'Lyn says:

    I want you to be there for your babies, too.

    Continuing to pray for you!
    – d.

  15. Stella says:

    I’m praying for no end to spontaneous trips. I’m praying for wonderfully smart and optimistic doctors. I’m praying for aggressive treatment that kicks cancer’s ass up and down the street and out the door forever.

    I’m praying for you.

  16. Kelly says:

    I so remember the sleepless nights. Knowing that my body needed rest, I would try and force myself to stay in my bed, on the couch, in a zero gravity chair propped in my living room, even when I couldn’t sleep. Then it was tv, movies, books, Solitare, Suduko – anything that could make a distraction, because there were none in the middle of the night, if only for a little while. I very rarely do any of those things anymore, and those days are somewhat of a distant memory today. But the statistics say that with IBC, it is likely that one day I will also learn that my cancer has “reoccurred” and I will remember back to what I have learned from you, know I am not alone, and that I will have also paved the way for the women that will come after us, for the doctors that must provide the best treatment programs, and for the researchers that want to learn more about this rare form of breast cancer. Today I will pray that God’s plan for you is to be an “IBC Success Story” and that the researchers will be writing about your case, hopefully as eloquently, as you write about your own battle with IBC today. And I know that more women will be diagnosed sooner, when IBC is more treatable, because of the awarenss that you have raised through your blog. I hope you will find some comfort in knowing that you have made a difference and it is my hope for your children that you will be rewarded with the opportunity to continue making a difference in their lives well into their adult years.

  17. jodifur says:

    I wish there was something, anything, I could do for you today and every day. You are in my thoughts. Always.

  18. kgirl says:

    I’m not the prayin’ type, but be sure I am sending everything I have, as well as a message to the universe for more.

  19. Alice C says:

    You and your family are in my thoughts – you don’t have to ask.

  20. Kim says:

    I just wanted to wish you well and let you know you are in my prayers. I am waiting to go for an mri to confirm no recurrence (one year since I finished chemo) and found your website through a friend. I’m so sorry you need to do this again but your energy and attitude are an inspiration.

  21. Nadia says:

    Sending you love and wishing you good luck from Toronto- Canada

  22. Linda Lawrence says:

    It would be pointless to tell you not to worry or be anxious. But it is not pointless to say we are praying for you in everyway for a good plan of attack today. It is so good for you and Grammy that you had yesterday together. Love you!

  23. It is better to worry than pretend there is nothing to worry about. Facing the facts and possibilities for your future IS being strong, and I feel a teeny bit stronger just reading your words, Susan. I wish you the very best of luck and the very best of medical ability for you today.

  24. It truly sounds like a beautiful weekend between watching Life and a day with Grammy that you most definitely deserve! You wouldn’t be human if you didn’t worry but I hope the sleepless nights stop so you can get the rest you need going forward. Sending all my love and good thoughts for today!

  25. justenjoyhim says:

    *Hugs* and definite prayers, Susan. Love ya, Judy

  26. Aaaand I’m bawling. I can’t say I know first hand what you are going through but I can say that you write about it beautifully and I feel the anxiety/sadness/anger/exhaustion as only I can imagine.

    It’s hard to embrace every single moment with this hanging over you. You do the best you can but you simply can’t make every single moment perfect.

    I’ll keep you in my prayers all day. I hope you can feel it. I hope you can find some moments of peace today knowing so much energy and prayers are coming your way.

  27. Susan, strength takes many forms, as you well know. You have it in spades and when you feel in low supply know that we are all here to lend what we can. PLEASE DO NOT HESITATE TO ASK! We pray for you daily and will step up the efforts today. Go with the Angels my beautiful strong friend. This too shall pass.

  28. Darryle says:

    I am so far away in Argentina and yet your words are so close and bring back my own many sleepless nights with the same fears. I remember trying so hard and what a futile effort it is NOT to constantly allow the fear to consume u. I can only add the most trite advice–one day at a time; that’s all you can really do and do what you are already doing—enjoy every instant in the present with your precious children and know there will be many more. Thinking of you constantly.

  29. Stimey says:

    You have my best wishes. Good luck with your treatment plan.

    That series Life? Is incredible. Nature is amazing. Those fish that live out of the water? The pebble frog? Amazing. I spend a lot of the time I’m watching trying to figure out how they caught all of that on camera. It’s incredible.

    I think it’s okay to worry. I think it’s natural. But you are still able to be a wonderful mother and wife, and that points to your strength. It may be hard, but you will get through it. You will prevail.

  30. Bon says:

    i wanted to thank you for your comment over my way: it makes me smile to think of you turning your head. that you think of my child, never met, five years gone, when you hear his name…it honours all the words i’ve put out for him over those years. thank you for telling me, Susan.

    and the Life series? i want to check that out.

    thinking of you, sending all i have. and love.

  31. kami says:

    This brought tears to my eyes, I think the worry can almost be as bad as what ever is wrong. Praying for you.

  32. Lisa B says:

    I’m not the praying type either, but I’m sending you, your family, and your medical team lots of positive thoughts and calming vibes. I’m also sending you strength to cope with the path ahead, especially as you already know how the treatment will affect you.

    Hugs Susan
    Love from my family to yours.

    Lisa B
    Hampshire, UK

  33. maryelena says:

    Many prayers for you today and as you worry at night. You continue to be an inspiration. In case the virtual science fair continues to be an interst, I thought of you as I sent my husband and 4th grade daughter off to the Techstravagnza at Thomas Jefferson High School on Saturday — they had a great time focusing on how science is cool, even for girls.

  34. NYFriend says:

    *tears* Wishing for you one kick ass treatment plan that gives you an incredible shot at life again.

    *Hugs & tears & more hugs*

  35. J.J. says:

    I haven’t stopped praying for you and keep you in my prayers day and night.

    I was THRILLED when I saw the Army of Women booth at the Junior League Annual Conference in Orlando this past week and I told them so — I told them I’m part of them thanks to my friend Susan and I urged those in sessions with me to go visit their booth.

    You are strong and you are mighty, and when you feel tired or scared or weak, you just call on the rest of us to help refill your reserves. We’re all here for you. Prayer is a powerful thing, but if there is more that I can do, I will do it, don’t hesitate to ask!

  36. Aunt Baaa says:

    I am thinking of you and praying for you every single day. I am pulling for you, no matter what happens. You are strong and you can do this.
    Hugs and prayers,

  37. Kristen says:

    You are so strong. you are. You never ever EVER cease to surprise me with the depth of your strength. You can do this. We are here. Waiting for you to ask. Waiting for the chance to love you and serve you. When you are ready, we will come.

    Until then, we pray with faith. Love you, Girl.

  38. Susan says:

    Sending out more good wishes for you: wishing you a good treatment plan, faith, hope, and strength.

  39. Oh, I pray. You better believe I pray. I so want for all of this to go away. To just go away.

  40. NicoleB says:

    I will pray for you….for you to be here with your babies as they grow up.

    I hope all of our prayers can lift you up and together we can help to carry you through the battle ahead…I want nothing more than to see you kick it’s ASS!

  41. CuriousParty says:

    Praying. Praying hard.

  42. Jew crew is on it. : )


  43. upsidebackwards says:

    Holding you in my heart, as ever, and sending lots of hugs. I hope you can sleep, but if you ever need anyone to talk to in the middle of the night I’m probably logged in over here. I’d be honoured to keep you company.

  44. Amanda says:

    Sending my strongest energy to world that has you soothing the babies of your babies.

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