It’s all been a jumble

It’s all been a jumble lately, an unsavory gumbo of pain and darkness and anger at the cancerS, seasoned only slightly with goodness and light and the corners of friendships peeking through, friends who don’t want to intrude but are there, ready to step in again when it looks like the right time.

I don’t know when the right time would be, exactly.  I’m not handling this well at all.  I thought that surgery would be the end of fighting the cancer, and that I would feel so much better afterwards, but I’m just not there yet, to be honest.  I’m in pain still, and can’t move my right arm worth anything, I’m so tired, and it all feels so much like I’ve been here before.

My yoga teacher actually verbalized that for me.  When she saw me on Monday, she hugged me, helped me modify the exercises (since I wasn’t even 2 weeks post-mastectomy then), and reminded me, “You’ve been here before.  When you first came, you couldn’t use your right arm then either.  But you worked through it, and it came back.  You can do it again.”  At the time, I was cheered by it.  Of course!  I have been here before!  I’ve been in pain before.  I’ve done bed rest before.  I’ve suffered the loss of the use of my right arm before.  Only then, it was due to the heavy tumor pushing aside my nerves.  Now, there is no more tumor.  There is nothing left to fear.  We just need to soothe the nerves that were jumbled and put in disarray by the mastectomy, and help the muscles stretch back to their original length and place.  It should be do-able.  It is do-able.  And I left with new resolve.

I slept all afternoon, and then, worried about the fluid sloshing around on my chest, made an appointment with my surgeon for Wednesday.

She, however, looking at the scars where my breasts used to be, feeling for the fluid, and tenderly tucking the swollen dog ears behind me, determined that I was healing well and did NOT need to be drained of fluid with the large syringe that she had ready.  She told us that I was healing well and better than expected.  I left with a light heart, and we walked around the city until my next appointment, delighting in the sky, the breeze, the construction site (yes, I have two young sons; it’s now a habit), the chance to stop at Trader Joe’s without a mini-cart and a balloon, and the opportunity that maybe — just maybe — I might run into someone I used to know, in another time and place, perhaps.  Well, this place, but another time, and another me, the me before I became a body that carried cancer around with me, and a soul to match.

We kept my second appointment, walking up the steps of the Integrative Healing Center where my new physical therapist and lymphodema prevention specialist works.  Stepping inside felt like stepping into a suite of healing light, a community of caregivers for the soul as well as the body, a place where hot herbal tea was always available and the examination tables were always comfy.  Bretta welcomed us to the space, and performed such amazing work over the next hour I was delighted to pay whatever she asked, even though my insurance is no good here.  She brought healing to my wound sites, softness to the swelling under my arms, and she worked on my poor shoulder that has caused me such problems and pain; it was immediately apparent, and she took it up like a pet cause, stretching, bending, popping it back into place, and explaining what I was to do at home to train it back again.  I left a new woman, delighted and relaxed, and turned to my husband telling him again and again, “I’m going to live!”

And then I went to support group that night at the hospital.  A group of young women with cancer, banding together to support selves and each other.  I was happy to share my news of cancer caught early and thrown away, happy to hear the news of others: chemo finished, mastectomies upcoming, radiation burns healing, hair finally beginning to regrow.  A pregnancy.  The first in our group of young women so concerned about fertility, but first concerned about death.  We all rejoiced with her, and peppered her with questions.  How did your ovaries survive the chemo?  Is ovarian suppression fully approved?  What about the hormone therapy – did you do that too, and how did you get pregnant through that?  We were so happy for her you’d think we were a roomful of pregnant women welcoming her into the secret society.  But instead we were a roomful of women without breasts.  Without ovaries.  Without, in one case, a rectum, actually, as we have a rectal cancer survivor/fighter in our group as well.  Pregnancy seems so far away.

But it isn’t, really.  I have to remind myself sometimes that it was only a year ago that I was pregnant.  That my body worked so well that I was able to carry a new life inside it, nourish that life, give birth, and support another little body with my own.  Milk that I made myself, and served up at just the right temperature and just the right time.  I was his world.

Now I am only a part of that baby’s world.  As has been true for so long, I can play with him on the floor, but I cannot pick him up.  I cannot hold him, or rock him, or put him to sleep in the crib when he falls asleep in my arms.  And my heart is breaking.  I want to be all things to him again.  And yet, I know now that that can never be so.

For while I have been broken and healing, he has been forming relationships with others.  He is the darling of four grandparents, the heart of his father, and the constant companion of his big brother.  Even the dog is getting used to him. 

Soon he will come along on every playdate, gaining friends my age and his, and then it will be time for school.  He never will be mine, and mine alone again.

So I watch eagerly as Canape births her baby, nourishes her baby, snuggles her baby, and loves her baby.  Make no mistake, the time with a newborn is not easy.  There are so many things to learn, and to do, and to provide comfort to another little person while one is so overwhelmed still by birth, by healing, by lack of sleep, and by the inevitability of change is not easy to do.  Nothing about having a newborn baby is easy, despite the hallmark images and oohing and ahing that we more experienced parents are prone to do as we see, and as we remember, but we don’t really remember, do we?  We don’t remember all the struggles and the scares and the counting of the wet diapers and the recording of the breastfeeding, and the is he eating? moments and the fears that maybe he stopped breathing overnight, or maybe just in the last five minutes since I put him down, I should go check on him, and the oh, he’s squealing, he needs his mama, even though we haven’t so much as been to the bathroom by ourselves today, much less showered, the anxiety that comes when we’re not sure what he needs, but the fear that overwhelms that, because shouldn’t we know what he needs? he is our baby, after all, and he was a part of us just last week, but then the tears come, and the weepies, and the worries that maybe we’re not a fit mother after all. The fears that are universal, but we just don’t know it.  The fears that threaten to make us question our fitness to be a mother, and that is the question that will cleave us in two, and hurt more than childbirth itself.  But little do we know at the time that it is these questions, and these fears, and this perseverence that arises, and the determination to solve the problems and comfort the baby and make everything right again that are still part of childbirth.  It’s the birthing of a new mother that happens in these days after childbirth.  It’s not easy, and it’s not quick, and it’s surely not pretty, but it is important nonetheless and will help each new mother grow to become baby’s mama (or mommy or momma or mother, as chosen by mother and child).  These are fears and worries and doubts that have plagued us all.  This time of mamabirth is so very hard, and so dark in that few women talk about it in the light, and so very few before this wonderful communal journaling that is blogging.  So with this I wish her and all newborn mamas luck, and stand by to offer any advice and comfort that I possibly can, but one thing stands out to me still:

He is yours, and you are his.  And for a time, that is all that matters. 

38 Responses to It’s all been a jumble

  1. Emily says:

    You remind me how important every single moment is.

  2. oh, wm. i’m sorry that it’s hard right now. but not totally surprised. before the surgery, you had all that adrenaline coursing through you. now your mind is free to wander to some of the darker places.

    but hold tight. it’ll soon be light again.

  3. Paulette says:

    This made me cry, not in a bad way. I think of my dear Linda whom I loved so much who lost her battle with cancer last year and whom I miss so badly, my heart hurts missing her. She was expecting 2 grandbabies who were due at the same time by her 2 precious daughters who wanted so badly for her to meet them before…..
    She was such a fighter and reminds me so much of you and your journey. Linda would be soooo happy for you and would rejoice at your miracle thats just the way she was. I believe God led me here to your site to rejoice in the fact God does perform miracles still. Linda was ok with Gods choice for her and her last words to me were It’s ok. I am ok.
    I rejoice with you and pray for you all the time. You are on my heart alot.
    You will find healing soon and you are not alone.
    Blessings today Susan.

  4. Andrea says:

    My little girl is the same age as your little guy. I started reading your blog last year when I was feeling blue because of Boston’s crummy weather. Your boys are just so cute. You’ve become an inspiration over the last few months! Last night I held my baby and rocked her “big girl” 1 year old body in my arms for an hour. She is a good sleeper, who self soothes to go to bed every night at 7pm. But there we were at 4 am, just like when she was a newborn. My husband commented this morning that he thought he was dreaming when he heard me singing lullabies over the monitor.

    I intend to hug my baby and love her even more every day.

    Thank you for sharing your life with all of us!

  5. Carin says:

    I don’t remember when I started reading your blog, and I think I may have posted before, but don’t really remember. I’m one of those unknown people who think about you every day…I hope that’s not a funny feeling for you!… you are in a folder in my bookmarks called “check on them” 🙂
    I am writing here because I couldn’t find an email address for you on your page (probably you get too much mail) but I wanted to share that I got an email from my cousin today with the subject “New Kind of breast cancer– no joke here folks” and when I opened it, it was about Paget’s Disease. I felt a chill because of what I have learned from reading your blog, and I felt grateful to you that I already knew about it. The email had a photo of an affected nipple, and a description of the symptoms, that happened to the woman while nursing. ANYWAY, I thought you might like to know that your intention to spread the word about IBC and Paget’s is working. If you want a copy of the email, just email me and I’ll forward it to you.
    Meanwhile, I’ll be checking on you every day, as usual.
    Be well,
    Fondly,
    Carin B.

  6. imstell says:

    Susan, Slouching Mom is right. You are at mental loose-ends right now and free to let your mind go to the unhealthy darkness it avoided pre-surgery. I know so well the frustration you are feeling. The sence of loss, of being trapped between two worlds – fertility and menopause – belonging to neither. The pain of being a mother yet unable to physically mother. I remember standing at the pharmacy counter waiting for my chemo RX, passing the time gazing at the ovulation predictor kits, fertility monitors, and home preganacy tests thinking that just a short lifetime ago THAT is why I came to this part of the store. Now here I stand, bald-headed and weak, unable to pick up my baby…

    I do understand, Susan. And the best news is that I stand here today to tell you that it comes full circle. While I may never buy another HPT again (and truth be told, I do still look at them a bit wistfully) I lift my little boy with confidence. I throw him to the ceiling if I wish! I carry him around and put him in his crib. We ride bikes and wrestle on the couch. I work full-time without tiring. I have more stamina than my husband. 😉

    The pain will pass. Your range of motion will return. The dark days will fade and be but a memory that soon you will relate to another cancer patient as “not so bad.”

  7. Becki says:

    I would be surprised and concerned if your feelings right now were all positive. You’ve been through so much, and while you’ve achieved a victory, even victories don’t come in tidy packages. I don’t have any doubt that you’ll come through this and that things will be much, much better. I just wish I could help the road to be smoother. You are still in my prayers.

  8. Allison says:

    Treatment is a process, and healing is a process. In fact, my experience with cancer showed me that the healing process takes a heck of a lot longer (years, in my case) than the treatment.

    I think it’s harder because your mind and psyche must heal along with your body. Regaining the sense of equilibrium that cancer steals from you is no easy feat.

    Be gentle with yourself, and give yourself time. You’ll get there.

  9. Meredith says:

    Like Carin, I too check in on a daily-basis and hold you in my thoughts. Our little ones are also the same age. This particular post made me weep. Once my son started walking at 11 months, my heart could physicaly feel him drawing away bit by bit. His first word and favorite person is Dada. But, I also have teenage sons, and so each moment I have to cuddle and nurture my tiny-one is very special. Once they turn 13 forget it!! I can relate to part of what you’re feeling.

  10. Bon says:

    sniffling.

    the walk through the strange days of healing once the Big Event – whatever it is – is over and faced down is always a hard walk, yours doubly so because you are coming to terms with so many changes.

    you are right about those babies, how hard and how precious.

  11. tina says:

    You will be in my thoughts and prayers this week while I’m out of town but I will check in on you when I get back. I’m so sorry that all of this has to be but let those who love you take care of you and show their love a little longer so you can come through victorious and healthy on the other side. Take each hug as twice as special as before because it is in their hearts to love you but now its in their minds when they take the time to show their love. You are a wonderful mommy. I’ll be sending my prayers from disneyland. Anyone you want me to give a special Hi 5 too?

    Tina
    mickelson@digitalpath.net

  12. This was such a fantastic piece of writing.. I’ve read it about five times now, so much to absorb.

    The healing, the physical laying of hands, the insurance, the support group, the idea of mamabirth.. all knocking around in my heart, making me feel like we’re sitting on a couch together with our feet tucked up and hands wrapped around hot mugs of tea.

    On a (somewhat) less fanciful note, have you ever looked into the possibility of healing touch? Some HT practitioners found us in the NICU, and it was interesting, and worthwhile.

    http://www.healingtouchinternational.org/index.php?option=com_content&task=view&id=2&Itemid=239

  13. Procrastamom says:

    Beautifully written. Thank you for giving me something good to read today. I wish you the best as you heal.

  14. spacemom says:

    Susan-
    You’ve had a rough time, a terrible diagnosis and chemo, surgery and yet, you have have a wonderful husband, and children. You need to take the time you need to grieve the life you though you have and embrace the life you have. It will not be easy. Everything you planed has been jumbled, but life is what is what it is….

    Take your time to straighten out the jumble…

    Thinking of you ALWAYS!

  15. amanda says:

    I don’t think that I am overstating when I say that you have been a mother, mom, mama of sorts to all of us. Taking us deep in your arms, educating us, comforting us and empowering us all with just the right amount of information, the perfect balance of emotion and pragmatism. You have nursed us from naive to driven and now we are each sprung from your arms, carrying your message to other women, birthing more knowledge, more awareness.

    Thank you for this. And, as surely as we knew you’d fight the stronger fight, we know you;ll hold those boys in your arms and that they will find a little baby in themselves to revisit the mama baby dependence.

  16. I think that before the surgery you had to just concentrate on the positive–now you have relief from the cancer, but time to think of all the might-have-beens. And the healing process after a major surgery is not just physical. It will take time…all of it.
    Our babies are the same ages, and reading your words has helped me look past frustration and anger that sometimes comes from dealing with toddlers, and just be grateful that I have them. I will always be thankful to you for that–you give me a different perspective on life.
    And your description of the first days and weeks after a new baby is born, the mamabirth, was so fitting…I remember those feelings so clearly. Thank you for reminding me often of what is important.
    I am, as always, sending hugs and good thoughts your way.

  17. Margaret R. says:

    One time, I pushed my double stroller up a tall hill. When we got to the top, another mom with a double stroller was having trouble holding her buggy steady while she comforted a crying child. Without even thinking about it, I let go of my stroller to give her a hand.

    Only after my babies had started rolling down, down, down the big hill– with a deep ditch right beside them and a stop sign at the bottom of the hill though no stop sign for the cross street– did I realize what I had done and started running after them. They were yards in front of me by then, and I was running as fast as I could, desperate, but I am not a runner. I caught the stroller an instant before my knees buckled and we all skidded to a stop.

    I walked home with torn jeans and bloody knees, and I cried the whole way home. I kept crying as I gave my babies their lunch and I cried as I rocked them to sleep and put them to bed. I couldn’t stop crying. That near miss haunted me for years– the realization about what could have happened, the understanding that my whole life might’ve changed, ended, in an instant. We’d made it through that near-disaster, but what about the others, also unforeseen, still to come?

    Maybe you’re feeling haunted by the near miss, too, but for you the terror is compounded by all that you’ve suffered in between. You’re tired and sick, and sick of feeling tired and sick. And you have every reason to feel that way. But you also know what makes you feel better, and you’re doing those things, too. You’re healing, and you’re healing everyone here in the process.

    Hang in there, Susan.

  18. Joc says:

    Susan I agree with so many of the other lovely commenters, when you were first diagnosed you had to go into full battle mode, look forward, plan for the best outcome. You were running on adrenaline, and the intense desire to beat this foul disease and be strong for your young family.

    Now that the battle is done its time to survey the damage, and grieve for the fallen. You have lost your breasts, possibly your fertility, and your old dreams of your future, you have been deeply hurt by this. You will get past it, I have no doubt, just from reading about your journey so far, you are a survivor, and you have the internal strength to overcome this. Just now your strength has been pushed to its limits, and you need to give yourself time to rebuild, and learn your new capabilities.

    You are in my thoughts everyday. Take care.

  19. Mandi says:

    your words are beautiful, i am weeping. you are definately one of the strongest women I ‘know’. sending lots of love to you

  20. Tara-Lynn says:

    A beautiful post Why Mommy. I am so glad for you that you have so many support systems to help you now.

    Oh, and everything you wrote about Mama love and the learning how to be a Mommy….so very beautiful and so very true.

    Hugs to you, amazing lady.

  21. Meredith says:

    This was so beautifully written. I completely know what you mean about sharing your baby. It’s hard being the center of the universe, but it’s also so special. I’m glad the physical therapist helped.

  22. whymommy says:

    You – commenters, new and old today – you took my breath away. Yes, SM, the darkness. Yes, Paulette, the sorrow. Yes, Andrea, the lullabies and the sweetness of rocking a little one unexpectedly through the night.

    All who are here who don’t comment too — you also are welcome, and I welcome you here. For every now and then, you take my breath away.

    Margaret, you put it into words exactly. It was the near miss that shook me, not the daily battle, but the strike I never even saw coming until it was past.

    Whew. This is oddly hard work. But today you all spoke to my soul, and I appreciate it more than you know.

  23. Dear Susan, I’ve wandered in for the first time, and am moved by so much of what I read and see here – what you write, and the love and care of the community that you have drawn to you, and the love and care you extend and offer to others. It is all truly inspiring to me. I was struck at first by your saying “I’m not handling this well” as though there is some “right” way of handling it, and maybe you just are handling it the only way you can right at this time. Tomorrow may be different. My prayers are with you. Thank you for sharing so much of yourself.

  24. Ally says:

    WM, only you can take a “gumbo” like this and turn it into poetry that will feed and sustain others. I am thinking of you tonight, as I sit here wiping my nose and blowing my nose and coughing (suffering from a bad cold). These bodies of ours, I wish we had more control over them. I’m so glad that you have so many healers in your life– the amazing therapist who helped you with your shoulder, the yoga instructor who spoke the truth to you when you most needed to hear it, and all of the readers and commenters here.

  25. Babe. I will share something totally unrelated but the same.

    Generally I deal well with Boo’s diagnosis. Laugh about it even. Make silly jokes. And some days it doesn’t even register on my radar. Then some days it hits me. The darkness, like SM said. But I know tomorrow there will be light.

    You will be the same. Light and shade. But know that soon the light will be commonplace.

  26. Beverly says:

    That’s a wonderful piece of writing. Thank you for sharing it.

  27. planetnomad says:

    I think that you are exhausted right now, and when we are tired our emotions wander into dark places. Don’t worry about them. Rest, snuggle your boys, heal. We love you.

  28. Stimey says:

    I’ve been thinking on this post since you put it up. I don’t know what else I can add that others haven’t already put so eloquently: the near misses, the what ifs, the draining of adrenaline. I just want to let you know how much I care about you. What you have been through these last months has been so hard. Just as with any trauma, it will take time to heal both emotionally and physically. Hang in there, woman!

  29. NYfriend says:

    Just wanted to send you big hugs, I’m always thinking of you…

  30. Kat says:

    Oh Girl…you have such a way with words. God is using you – don’t every doubt that. He hold you in the palm of His rightous right hand. It’s normal to feel the way you do, but I know that doesn’t make it any easier. I’m so glad you have an outlet in writing things down. You are helping so many people, more than you know, and hopefully it helps you too to put it down. You’re a fighter…don’t quit fighting! Here’s a poem tht helped me so much when I was going through my radiation and then ltwo months later when I broke both bones in my right leg. Hope it helps you too.

    DON’T QUIT

    When things go wrong, as they sometimes will,
    When the road you’re trudging seems all up hill,
    When the funds are low, and the debts are high,
    And you want to smile, but you have to sigh,
    When care is pressing you down a bit,
    Rest if you must, but don’t you quit.

    Life is queer with its twists and turns,
    As everyone of us sometimes learns,
    And many a failure turns about,
    When he might have won had he stuck it out;
    Don’t give up though the pace seems slow,
    You may succeed with another blow.

    Success is failure turned inside out,
    The silver tint of the clouds of doubt,
    And you never can tell how close you are,
    It may be near when it seems so far;
    So stick to the fight when you’re hardest hit,
    It’s when things seem worse,
    that you must not quit.
    _____________________________
    I’m not a quitter and I know you’re not either.

    Hugs,
    Kat

  31. Susan K says:

    Oh I wish I could help. I wish I could take away the pain and the frustration. But each day you get stronger, and farther from that cancer. And each day you get closer to lifting those boys and playing horsey with them.

    I thought of you today as my 7 year old and I both went and got our hair cut for Locks of Love. Me for the first time since 1988 (except for the odd trim at home) and daughter for the first time ever (ditto on the home trim). I gave 15 inches and she gave 19! I keep reaching to the back of my now-empty neck and there is nothing there. Very weird… Soon, you’ll even have hair back!
    (pics to you tomorrow from work)

    So hang in there, rest up, and look forward to your upcoming work!

  32. Oh my my my. “The soul’s bliss and suffering are bound together like the grasses” It seems there is no one with out the other. Margaret R. – your words, while meant for Susan, are sure to help other mammas too. Thank you both.

  33. Karen says:

    Everyone has written such beautiful words – I wish I was so eloquent. All I want to say is be kind to yourself, you have been through such a lot in such a short time and your body needs time to heal physically, mentally and spiritually. And it will – when it is ready. Now rest.

  34. okayfinedammit says:

    ((hug))

    Please don’t judge the way you are handling things. Just know that you *are* handling it, and that that’s enough.

    It’s enough.

  35. Jessica says:

    Shanti, shanti, shanti

    Peace, peace, peace

    You already have it and you teach all of us to live it. I pray that you go deeper into it and wake with joy, just as you will with health (!), every day.

    Love from a newbie.

  36. mummycha says:

    Yes, this is no surprising that you are under the effect of the “cancer aftershock”
    soon, very soon, you will feel less tired and the pain will be gone. I am sorry I did not write to you earlier, and when I visited your site today I was very happy to read your post about the good time you had watching stars with your little one.

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  38. adriannablu says:

    Your writing is mesmerizing, the sentiments beautiful. Poetic justice to a period of grieving and hope. You remain in my thoughts and prayers, as do your little ones!

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