Perspective shift

This morning was pretty much awful. 

I held it together while I walked into the chemo ward, confident (enough), calm (enough), and ready for my blood draw — until I was seated in a very small room with three chemo chairs nearly side-by-side.  What’s a chemo chair?  Well, these are large overstuffed innocuous looking hospital chairs – unless you’ve been in one before, and then it’s also overstuffed with emotions, which typically aren’t that comfortable to sit on.  The man in the closest chair looked just awful – cap down low over his face, shoulders hunched, half-dozing as he waited for bloodwork to come back and the drip to be placed on the IV stand that sat arrogantly between him and the other patient.  I wondered what trial he was on, and hoped fervently that he actually wasn’t as bad off as he looked.  As I glanced at the woman in the other chair, I was somewhat reassured, as she was smiling and responding to email on her blackberry.  She looked like Sarah, actually, and I found a bit of a smile for her later.  “Sorry.  I’m a little nervous,” I explained.  “First day back.” 

First day back indeed.

The blood draw was delayed while they sent for smelling salts (I have this horribly embarrasing tendency to pass out if they wiggle the needle around in my vein, trying to get a better stick – after chemotherapy, one’s veins tend to be smaller and more stubborn.  Last Fall, one fainting episode ended with yells of “40! 40! Get the crash cart!” and big sticky pads placed on my chest for the defibrillator.  That’s when we found out I had vasovagal response, and that it was better to warn nurses and techs ahead of time, and to have smelling salts handy).  We waited, patiently and silently, in the small little room with the fuzzy tv mounted to the ceiling that showed us the weather, over and over.  The four day forecast, fourteen times at least.

After a while, they took my blood and sent it away for analysis.  If my labs came back “good,” then we would start the trial. 

We waited.  We made appointments, returned phone calls, and basically tried to wait together and not separately.  The man in the chair next to us woke up, mumbled incoherently, and when we looked over again, he was perfectly in control of himself — as he should have been, as it turns out that he was the other woman’s support person — her husband — and not there for treatment at all.  My impression of him as a cancer patient in later stages than me?  Totally off.  He’s fine.  He moved to a smaller chair as another woman walked in and took her place loudly, swearing about the 17 page consent form for this next stage of her trial, and we all waited patiently, trying to mind our own business.

After a time, we were taken to another room and told again to wait.

There was a lot of this, and I’m sure you don’t need it in excrutiating detail.  I asked questions, got answers, got a copy of my labs (everything’s fine), reviewed the list of potential side effects again, and finally got my meds.  I start the pills tomorrow.  There are two drugs.  One of them is an aromatase inhibitor (AI), which starves the cancer cells of the estrogen that they need to thrive.  The other is sorafenib (Nexovar), which “interferes with the ability of cancer cells to grow and divide.  The drug blocks two different pathways that would normally help cancer cells to multiply; one way is by limiting the blood supply and nutrients to the cancer cells and the second way is to stop the signal that allows cancer cells to grow in number.  Breast cancer cells are especially dependent on these two pathways to grow and we may be able to slow down or stop them with sorafenib….” (from the description of the clinical trial).  The clinical nurse had good things to say about the trial, since related drugs have been shown to work well together, even though sorafenib has not shown to be effective on its own (for locally advanced or metastatic breast cancer).  She was hopeful that this would slow down or stop my cancer growth.  She reminded me that the amount of medication given could be reduced or my participation stopped if there was too much of an effect — 20% growth in the cancer, or significant adverse impact on my quality of life.

Quality of life?

Did I miss the memo?

Apparently I did, as through my tears in the minivan afterwards I could hear my husband saying gently, “This is good news.  This trial is good hope that we can keep you alive and in good shape for longer.”  His words echoed in my ears, rolling around my brain and mixing with the words of the clinical nurse earlier.

Quality of life?

Keep me alive?

I thought we were still going for a cure.  Silly me.  I missed the memo.  I was still holding to the words of my oncologist in 2007, in 2008, and in early 2010, when she said to me earnestly, “We are doing this to get rid of the cancer.  I am hopeful for a cure.”  And yet, I totally missed the fact that she didn’t say that to me this time.  I’m locally metastatic — again — and this is totally serious.  The new meds may (hopefully WILL) slow my cancer growth or even stop it, but nowhere in the study materials or in their expectations will it actually get rid of the seven tumors in my lymph nodes in the soft tissue cradling my lungs.

The hope is that the meds will slow the cancer’s growth, and allow me to keep this quality of life.

This life, which requires frequent naps. Lymphedema sleeves. Lumpy body in all the wrong places.  And then some.  There is no “recovery” expected here, necessarily.  Things will not just be “fine.”  And I’ll have to come up with new words soon, words to reassure strangers who pry and wait for me to reassure them.  I can no longer say, “Well, I *had* cancer,” or follow up with “but I’m fine.” 

I’m not.  I *have* cancer.  I’m never going to be perfectly fine again.  There’s a (small?) possiblity I may be cancer-free again, and I HOPE AND PRAY I WILL BE, but I have to learn to be fine with what is now, and to swallow my fears, and to appreciate the life I have.

This life.  This day

There is no more “Just wait until treatment is over!” or “In the Spring, we’ll be able to ….” because this is it.  This is the quality of life that we’re trying to preserve. 

Last Sunday, I told my priest after mass that the cancer had come back, and that I would have to miss RCIA this week.  I told him that I was hoping and praying to be accepted into a clinical trial, and I reassured him that I was confident that it would help.  He asked me how long I would have to be on treatment, and I clarified that it wasn’t that kind of a treatment — that I would be on it, if it worked, for the rest of my life.  He reacted visibly, saying, “For the rest of your life?  Really?”

And I almost laughed inside, suddenly realizing why he was shocked.  For him, the rest of one’s life is a long, long time.  For me — well, let’s say I just wish it were.

Sorry about ending this in a sad place.  I’ll work on the change in perspective and be back to my normally grateful self tomorrow.  For now, shake it off – go read about our area’s ice storm at the always hilarious Stimeyland, or read about some inspiring women at Women in Planetary Science if you’re not clicking away already to the next blog in your reader.  Thanks for stopping by.

117 Responses to Perspective shift

  1. Katie says:

    Thank you again for your raw honesty.

  2. Sending much love to you.

    xox

  3. I’m sorry the day was so rough. And you’re allowed to be sad. Your readers are here for you, not the other way around.

  4. Jenny says:

    Beautifully written as usual Susan – Love and Hugs – I’m still waiting to hear about what they have seen on my lungs etc so my thoughts have been following a similar vein to yours. I think everyone needs to see our vulnerability at times as much as we want to be seen as ‘strong’ and ‘grateful’ and ‘brave’ – the truth is that at times inside our heads we are anything but.

  5. Laura Johnson says:

    Susan, I missed the memo as well. I didn’t realize that this was “maintenance” most likely – and not a way to rid you of cancer.

    Everything I want to say is simply inadequate…so just know that my family thinks of you often and we’re all praying for you and your family.

    And, while I know you know this….there is no rule saying you have to be happy and grateful every day. All the other emotions are valid…and you have every right to feel them…and write about them.

  6. Laura says:

    Instead of clicking on to teh next blog post in my reader, I’m coming here to say thank you for your honesty. And please, never apologize for sharing what you need to share. In this moment, or the next. Your journey is yours and we are blessed by your willingness to share it with us as we travel by your side.

  7. Lisa says:

    Oh, my heart hurts for you. I have no words. You are so strong & you’ve been fighting this for so long. I just know they will come up with something new that will be a cure. For your sake & so many others. Just hang in there until it happens. I think about you every day. You can do it.

  8. Amy says:

    Oh Susan, I don’t know what to say.

    Is it the sort of trial where everyone gets the medicine, or could you be getting a placebo? Because it would SUCK to come this far and then not even get the medicine. I think they usually compare new drugs with the best available current therapy, but I’m not sure exactly how it works.

    Who knows, maybe this medicine is even better than they expect it to be. That’s what I’m going to hope for.

  9. Bon says:

    if i were there, i would look you in the eye. and say, okay. this is how the story has changed.

    maybe i would say goddammit, i am sorry the story has changed. or maybe not. i don’t know if you want my sympathy. but this change represents a loss of something you’ve held tight to, and so you have it. anyone who has to weather major change in their story deserves sympathy, because that weathering is HARD.

    then i would take your hand when you were ready, and we would talk about tomorrow, and gratitude, and all those wonderful things that you are so damn good at.

    but you get to have today, this moment of taking it in, too. and you do not need to apologize. because this IS a sad place, this place of shifting stories. and for all we may all wish with all our hearts we could make it different, we can’t. we can just hold you close, all of us sad, and then step forward, still holding you and your courage and all your todays to come. because you are our friend.

  10. Terry Arnold says:

    You melt my heart, from another Catholic chick with IBC…

  11. Sunday says:

    Susan, I love your honesty and your openness in sharing all of this with us. I cannot imagine how hard this must be for you, but I am glad that today you put it into words and shared it.
    My prayers are always for you, my friend.

  12. Oh, that Bon… she has a way of articulating just what is in my heart, too.

    So, I will simply add:

    Love you, love you, Susan.

    xoxo CGF

  13. Amanda says:

    Don’t ever apologize for how you end something. You are not a super hero, you are not a character in a novel, you are a person—kick ass, legendary and inspiring though you are, you do remain a person with emotions.

    We honor it all. And adore you. And experience a loss today as well.

    Wishing I could make things different than they are, but grateful as I can’t that I can at least be here. Always.

  14. Joan says:

    I read this with the most empathetic heart – I know those chairs, that wait, the whole uncertainty. What a gifted writer you are to be able to not only articulate your thoughts so accurately, but in a manner that also educates. There is no need to feel you should end on a happier note – the blog is your place to pour out your heart without filters. It is there to teach us the readers as much as it is a place for you to spread out and examine your feelings without fear of judgment or editing it for others. I think I once did a whole blog post about the ceilings in dr.’s offices, how you stare at the different types while you wait, and think, and pray, and fear, all the time counting the holes or rows or tiles. (As an ovarian cancer survivor, I spend a lot of time on my back with my feet in stirrups…..)
    I send you love, light, virtual Valium, and my heart. Keep writing, I’ll be reading, and I’ll be close by.

  15. pgoodness says:

    Bon said it perfectly.

    I’m sorry about the change, praying that this will be better than they’re hoping for, and hoping that your priest knows something you don’t.🙂

    Lots of hugs and love to you and yours.

  16. Becky says:

    Praying for you, Susan. Fervently and always. Thank you for your courage in sharing your story with us.

  17. magpie says:

    you are allowed to be sad. you don’t have to keep putting on a happy face for us. be sad, be articulate, be you.

    holding you in my heart, dear.

  18. Echoing the words of the two Lauras who have already commented. {Much love and hugs.}

  19. lorri s. says:

    You know what? We need your inside perspective. It’s good for all of us. Thank you for putting it into words.

    Sending love!

    Lorri

  20. Sarah Dees says:

    Dear Susan,
    I’ve been reading your blogs with great interest.

    I am your friend you haven’t met yet, your cancer sister, who understands this perspective shift. I agree, it does continue to shift, as sometimes, we feel like withdrawing from the world to suffer our wounds in private, and at other times, we need to tell people around us, and long for that understanding we desperately need. I can relate to your need to write about your experience. You want this to be for something, to have accomplished something in going through this, as you have accomplished things all your life. My perspective changed dramatically, over the period of treatment and afterward, and it is still changing.

    After my treatment for rectal cancer, I did a lot of research to find help for myself. After all the work, this is the group I created and manage on Facebook to share it, to help cancer patients, survivors and their families. I’d be very pleased if you post the link to your blog, and information about these other Cancer Mom blogs, on the site.

    I believe that reading your blogs fulfills an important emotional need for me, a different need from the physical resources and financial resources, but just as important. Even if I don’t comment, I am here, nodding my head up and down, caring, listening, valuing what you are doing here.

    The sadness, the fear, the uncertainty, these things are important to share, as well as the positive moments. We all face them. What’s good is to know that we aren’t alone, and that it is all part of the roller coaster ride of cancer. So no apologies needed for expressing the truth.

    CANCER – FINANCIAL ASSISTANCE, RESOURCES, SCHOLARSHIPS, INFO
    http://facebook.com/cancerfinancialassistance

  21. Neil says:

    The fact that you sat down and wrote this post for us to read shows a strength that goes beyond the mere words on the page. Thank you. I’m here for you, too.

  22. loran says:

    Yep, your friend Bon is right on. Said so well. I know that all you do to communicate about breast cancer is going to make a change in this world for a cure, and I know that you impact positive change in all who’s lives you touch. I also know that you are strong and ready for these trial drugs and they are going to do everything they can for you. Sending my strength, sisterhood and a kick-ass message to that cancer – back off.

  23. Kristen says:

    I love you so much. That might not mean much today but maybe it will help you tomorrow or the next day or the day after. Because you will always have it.

  24. Tina says:

    Susan:

    Thank you for sharing your story. My mother in law is fighting stage 4 cancer and we are personally discovering just how much cancer sucks as a family. I really really hope that this new treatment helps you. i will be praying for you to kick cancers ass.

  25. justenjoyhim says:

    You don’t have to apologize and you don’t have to be grateful. You just have to be . . YOU. We’ll take you however you feel, honestly.

    I know, how well I know the fears, the “how long will I have?,” the questions, the things you don’t want to say but are in your mind all the bloody time.

    And I hate it for me and I hate it for you. It’s not pity; I know how you hate that. It’s anger and sadness that you have to go through this.

    It’s not fair. I know “no one said life would be fair,” but no one said life would be this unfair either.

    You’re in my thoughts and prayers, Susan. Even when I’m angry with God, even when it’s hard to pray, you’ll be in my prayers.

    Lots of love to you,
    Judy

  26. Niksmom says:

    Susan, I don’t know what to say except that I am holding you constantly in my heart and prayers. You don’t need to apologize for expressing the reality of your situation…no matter how raw it may be, how sad, angry or anything else it may be. Ever.

  27. Joy says:

    I’m so sorry. It’s OK to end a sad day in a sad place. You’re mourning the loss of a way of thinking, and trying to find a new one. Tomorrow you’ll pick yourself up and go back to fighting the fight. God, cancer sucks.

  28. talesofmy30s says:

    Your voice is still quite strong even when you’re not otherwise. Thank you for sharing your journey, your “inside words” as a previous commenter mentioned.

  29. ella says:

    Hugs Susan and willing that tomorrow is a better day for you xx

  30. J.J. says:

    Gigantic hugs to you. I am still holding out for the fact that buying time means buying time for a cure to be found — no the clinical trial itself is not a cure, but perhaps a cure will be found in the meantime.

    The one gift of knowing that time may be limited is that unlike so many people, you will and (have) focus on what’s important and not bother with the unnecessary distractions that bog so many people down in life.

    Doctors have been surprised before and they may be surprised again by what happens with you — Gabrielle Giffords doctors didn’t think she’d come as far as she had and attributed her initial positive signs of recovery to “the power of friendship” — I believe in science and medicine, but also in prayer and positive support.

    Give yourself time and space to accept your perspective shift, but also allow yourself to continue to hope. We’re all here for you!

  31. Susan says:

    Susan, you have such a strong and powerful voice, in sadness, in grief, in frustration, in joy. I’m holding you and yours in my heart.

  32. kathleen says:

    oh, i want to hold your hand and rub your back. re-framing your story, your LIFE really, is always hard and sad work. there will be more joy and thankfulness, but for now it is sad and hard. we are all sending much love.

  33. *m* says:

    You and your family are in my thoughts and heart, today and every day.

  34. divrchk says:

    Please continue to be honest with us. You have every right to feel everything you are feeling. You are strong and you are here and present. Prayers for the trial to go as best as possible and be successful for you and your family to be able to enjoy life together.

  35. I’m here too, choosing to be greatful that you have the opportunity to take part in this trial and appreciating you and your journey and all of your feelings, whatever they are. They are yours and we love you.

  36. PLEASE don’t feel like you need to apologize for being down. How could you not be? I think you should feel free to put however you are here. This is your place.

    I’m so sorry for what you’re going through. I wish you well and my prayers will be with you.

  37. annie says:

    Susan, I’m sorry to read how hard this is but know that I know exactly what you’re feeling if you want to email me.

    I have been on an every day treatment for almost 5 years…for a cancer that had a 12-18 month prognosis before the new drugs. We are the new breed of patients who live with “cancer as a chronic illness”.

    You can do this!!

    • Stacey says:

      Oh, it’s so wonderful to read annie’s note. I had no words that I thought would help, but annie’s story helps me imagine that you *will* have a long, full-quality-of-life life and I hope they help you believe, too! Thank you, annie, and thank you, Susan, for sharing. Much love, s

  38. Laurie says:

    I’m so sorry you have to go through this, Susan, I really am.

  39. Stimey says:

    I know how much these words you just wrote knocked me down, so I can’t even imagine what they must have done to you. I get so mad that this happened to you. It is so outrageously unfair that women like you have to go through this. I wish I had words for you. I wish I could take your pain and your heartache away. All my love, friend.

    • Urban Mama says:

      Everything Jean said. But also: please don’t apologize for anything you write. We’re here, reading, praying, hoping right along with you, and you should write exactly what *you* want, not what you think you *should* write. We love you and want to know where you are in *this* moment, so don’t be afraid to share it with us.

  40. akazookeeper says:

    I have LAMS disease. I will never “get better” and treatment will never “cure” me. I am so sorry you are going through this and you and your family will be in my thoughts.

  41. If only I felt that sending love through the ether of the internet would be good enough, since that’s all I’ve got. I’m sending it anyway, of course. I wish you all the power of the universe in combination with every positive faith and belief that you will be well.

  42. I’m always amazed by how articulately and delicately write about your battles. I’m not sure what I can say or do in this comment to help, but just to let you know, you inspire me and I’m sending you all my love x

  43. When our stories shift it can be brutally hard. And it’s okay to take that moment to breathe through it and adjust. Never ever apologize for that.

    Take this moment and as many as you need. I’ll be standing beside you (virtually), sending you my strength and love the entire time.

  44. Lots of love and hugs from me, and a few tears too because as Stimey says, it has hit me hard and I can only imagine how much harder it is for you. But no pity. Friendship, love and support, and bucket-loads of hope. Truck-loads of hope.

  45. Joeymom says:

    We’re grateful for you, for this day- every day. Sending plenty of good thoughts- you are doing great things.

  46. Delora says:

    Exactly what J.J. said. These drugs and this trial may not be a cure, but if they can keep you at this level, at this life, then that gives you that much more time for other drugs and other trials to give you a cure. If these drugs can keep you at this life until a real cure is found, than that itself is the real miracle.

    Cancer sucks, and it is so unfair that you have to keep going through this, time and again. Your strength and determination through all of your struggles is so admirable. Lots of love to you my friend.

  47. Eve W. says:

    I’m sending hugs and prayers…

  48. robpatrob says:

    How do you keep going? Such fortitude.

    I recall my wife Robin telling at one point during chemo that she just wanted it all to end. Is there a point for you when the “cure’ costs too much?
    All the best
    Rob a witness and cancer husband

  49. I am not giving up hope. I KNOW that this clinical trial medication will keep you living well.

    And I have two prayers: Firstly, that the side-effects will be minimal so you can build up your strength.

    Secondly, I am praying that your cancer will be GONE. That your doctors will watch the tumors decrease in size over time, or if you have to, that you will blast them with another chemo round when you are strong enough later.

    I know you will beat it. I know it. You will.

    • That prayer for a miracle is alive in me too. One day, they will find the drug that will keep cancer at bay so people can lead long and healthy lives. And maybe this is it. I pray that it is.

      • Colleen says:

        Susan. I know that miracles happen. Not believe, not hope. I know miracles exist. This is the thing — You. Already. Are. A. Miracle. Your goodness shines for everyone to see. You are shining in corners of our world that you don’t even know about. You are shining the light of God into dark and scary places, for yourself, yes, but also for others — and that is a miracle to me. Miracles happen. And I, with Jess, I know you will beat this disease. I love you so.

  50. Thinking of you and sending prayers your way. Thanks for sharing this part of you with all of us.

  51. Jeannie says:

    I think of all the many gifts you give the world through your blog. I think of your wonderful boys. I think of your amazing intelligence and curiosity. Regardless of shifting perspectives, I hold you in my heart and send you love.

  52. Beth says:

    You’re in my prayers.

  53. elesha says:

    I may well have tears after reading this, but you just put things in such a way that I feel like Im there with you, I find myself thinking this is exactly how I would feel and think in these situations. However please don’t EVER feel the need to end things on a positive note for us. Im a big believer in allowing ourselves to feel what we feel and act, speak accordingly, and pretending we feel other wise for others is to exhausting.
    I believe you are going to be cancer free again I really do.
    I hate more than anything that you are going though this again. Im just praying for you in everyway.

  54. Please don’t apologize for being in a sad place. You have earned the right to take up exactly the space you’re taking up in this world, and whether you believe it or not you are doing so with such grace. I’m sorry it sucks, because it does. It just does. But you don’t, and I can’t imagine anything you could ever do that would change that.

    You’re on my mind.

  55. Erin Alanna says:

    I am so sorry that it was such a shitty day for you. You have every right to be sad today. I just hope and pray for comfort for your heart for tomorrow.

  56. Linda Lawrence says:

    I vote for your priest! Screw the memo! Ugh! I can’t believe I actually said that!

  57. Never apologize for sharing the truth with the people who read this blog. I hope you know there are tons of people pulling for you, and I hope you can draw some strength from this.

  58. Kimberly says:

    I saw this post by way of twitter and I just want to say that I honor your raw honesty. I work in a Children’s hospital and frequent on the Oncology floor and I am so amazed and inspired by these brave souls walking in for treatments. I dont know where they and you find that inner strength to face something so fierce. I admire that courage and I also respect when you need to feel like shit (sorry for swearing). It’s ok to be sad and angry because let’s face it, cancer facken sucks.
    We are all here to listen good or bad. No expainations needed.
    You have my prayers my friend. Kick some ass.

  59. Colleen says:

    No apologies. This is your place. You do what you need to do.

    Just know that you have so many people out here also hoping and praying for you to once again say you are cancer free.

  60. Sarah says:

    I cannot find the words, there are no words, but know that I am thinking about you and sending all my love.

  61. BetteJo says:

    I don’t know many people who would have been able to face what you have with as much strength and grace. So if you need to cry, scream, rage against what is – you ought to. You get to have all the emotions including anger and sadness that anyone else would. Cancer is affecting YOU. I am pretty sure if it were me, I’d be getting out the fancy tea cups and throwing myself a huge pity party every other day. You haven’t gotten even close to that. And no one is going to run away when you do get down. I’ll continue to pray for you – and I’ll also go get the mammogram that I am overdue for. Promise.

  62. Suzie P. says:

    Sending you loads of love and strength!

  63. Jeanne says:

    Never apologize for what you are feeling. Be honest and forthright at all times even if what you are feeling is sad.

  64. Joanna Moore says:

    Hi Susan,

    I follow your blog and I also have IBC, Stage IV. I am so sorry that you are having to go through all of this. I was diagnosed in April of 2008 and since I started at Stage IV, I had to grapple with the “cure” reality right off the bat. I just wanted to give you my opinion that cure vs. control is a semantic construct. I will probably always receive treatment but I have no restrictions in my life and I don’t feel that I am on a short time line. When you start feeling better, you will go back to all of your activities with your family. I lead an active life (sometimes I play tennis as much as 15 hours a week) and control is control. I guess it would be wonderful to be able to say that I “had” cancer rather than I have cancer, but when you keep the cancer at bay, then life goes back to the way you know it. I hope the trial medicine is wildly successful and that you can get to the point that your confidence in having many more years to enjoy your husband and kids is restored.
    Best wishes and thanks for participating in a trial that ultimately could help all of us.

    • elesha says:

      Perfectly said…and could only be done by someone who “knows”. All the best to you as well.x

    • whymommy says:

      Dudes. I was so selfish in my writing above. Of course, you’re right. You’re right….

      • jaydub26 says:

        You were not selfish, you were real and thats nothing to be ashamed of. Joanna is right in some of the things she says but I find it a bit simplistic to say ‘Oh life just goes on when your Stage IV’ There are very real challenges and most people do have to adjust to a very real ‘new normal’. I do agree with her about the ‘control’ vs ‘cure’ aspect though – you can live with ‘control’ for a very long time and that is my hope for you – Love and hugs as always

  65. thordora says:

    You’ve been on my mind all day and all I keep coming back to is “cupcakes. I would make her cupcakes.” But I can’t trust Canada Post and frankly, I burn things.

    Your space. Your words. I’m awed to share in them, because your perspective shifts my own-that as a mother, a friend, a daughter. Sad is just as worthy as anything else you might choose to share.

  66. Jackie says:

    I cannot imagine how hard days like this are for you, and I’m sorry they are so hard. We are here for you always, bad days and good days. I just hope you have many more good then bad ones to come.

  67. elesha says:

    I had to come back on here and tell you this. I just read an article about a women in the UK3 Mrs mcdonald who celebrated her 100th Birthday despite battling cancer 5 yesss 5 times. She had a double mastectomy, hysterectomy, bowl cancer and the list goes on. She said despite it all she has been in good health for 50 years.
    Docs rote her off many times and here she is.
    Miracles happen they still do we just have to look for them sometimes.

  68. elesha says:

    UK I mean..

  69. Tina says:

    Susan,
    We’re all sending love your way…
    Hugs,
    Tina

  70. Mary says:

    Susan — what makes your blog wonderful is that you are a REAL person — fantastically strong, very insightful but real with all kinds of emotions and feelings. For you I hope more happy than sad days but never worry about reporting any of them to your readers who are sending you love and praying for you.

  71. My heart and prayers go out to you Susan.

    Love and prayers,
    Nicole

  72. carosgram says:

    No need to apologize, this is a sad place. There is knowing and then there is ‘knowing’. Each of us know that some day we will die and we live as if it will never happen. Maybe that’s a good thing. Wishing you all good things!

  73. Valerie says:

    hugs and prayers – for peace of mind, strong faith, and the comfort of friends and family.

  74. Meg says:

    Sending you strength and strength and strength for this journey. May you have joy and peace and happiness, each and every day.

    Meg (3 year breast cancer survivor and mom to almost 5 year old twins)

  75. Sweetie, there is no reason to apologize for ending this in a sad place, or feeling the need to return to your grateful self before you’re ready, you are sharing what you are going through, the good and the bad, and we wouldn’t be here if we didn’t care. You’re allowed to feel what you’re feeling, and mull around if that’s what you need to do to “right” yourself emotionally. Do what you need to do, hon, and lean on us.

    Much love and health-filled prayers to you, sweetheart.

  76. FishyGirl says:

    Please don’t feel any need to apologize – where you are is where you are. We love you no matter where that is. I wish it wasn’t this place, but the love doesn’t stop. Be strong, and peace be with you.

  77. […] 21, 2011 by annie Yesterday I was reading Susan’s post at Toddler Planet talking about a clinical trial she’s just entered for breast cancer (Susan I hope it’s […]

  78. Stella says:

    My dear Susan – You didn’t get the memo. Both a blessing and a curse. I cannot begin to fathom your shock. I remember quite clearly the day I first learned that “metastatic” meant “no hope for cure.” Shocking doesn’t begin to describe the feeling.

    We IBCers are breaking new ground here. YOU are breaking new ground. There are no rules for you – us. No statistics to track the progress of those that have gone before. Quality of life, indeed.

  79. I am so mad. I’m mad that you have to go through this, and I’m mad that you even have to think this way. You are an amazing woman and I hope that this treatment is much more than just maintenance, but that it eradicates your cancer entirely.

  80. schmutzie says:

    This weblog is being featured on Five Star Friday –
    http://www.schmutzie.com/fivestarfriday/2011/1/21/five-star-fridays-135th-edition-is-brought-to-you-by-albert.html

    And quite aside from Five Star Friday, my heart is with you, as it often is.

  81. Susan, please don’t apologize to us. This is your space, and we come because we love you, not because we expect you to sugar coat words for *our* sake.

  82. Jane says:

    We stand on the shoulders of giants in our lives. They may be the shoulders of our parents, our mentors, or the trailblazers of arts, letters and science in our careers. As I stepped up to the mammography unit yesterday (after reading your blog) I felt you lifting me as I stood on your shoulders. Thanks to you, Susan, I do not fear the results – I am armed with the medical outreach you share with us and and the aura of your personal strength. You are our giant!

  83. Catherine says:

    Susan – I read your post just after you wrote it but then got wrapped up in a family member’s health crisis. Just now coming back because I wanted to chime in to let you know I read, I care. There are so many lovely comments. I think of you so often (driving, in the shower, pausing by the window to admire the moon…). I’ve only “known” you now for a few months, and only virtually. But your writing is so powerful, your family so lovely and happy — and you: I’m so grateful for what I’ve already learned from your courageous actions and writings. I’m sad about your cancer, and to be honest I was almost relieved to read this post — the feelings you described all seem so right for this awful situation. I have HOPE for you too, and I join so many in sending you my love.

  84. […] regional recurrences to being truly metastatic.  Where the aim turns from cure to control.  Whymommy and Annie have written really good posts on this and I urge you to go and read their words too for […]

  85. We are here, and still reading. It is really sad and scary – feels like a sucker punch.

  86. Deb says:

    I don’t have cancer but I do have a severely handicapped daughter and I remember talking to the doctor when my little girl was fifteen months old. The doctor said, “Of course she’s mentally retarded, but she’ll be trainable.” I had waited for fifteen months for a diagnosis and when I heard it, I couldn’t believe it, even though a part of me must have known it.

    You have metastatic cancer and you’re a scientist so you’ve already done all the research. I am beyond sorry Susan.

    I have been reading your blog since you were first diagnosed. I lost a very good friend to cancer just over a year ago. My friend was the best kind of nurse, the kind who was both highly skilled and incredibly kind and compassionate. The two of you have inspired me to take an oncology course in the hopes of working with cancer patients.

    We all give lip service to the idea that we only have today but you must live it. I don’t know if that’s a curse or a blessing.

    Thinking of you and sending you good thoughts. Take care.

  87. Oh Susan, no apology please. Don’t be brave for us dear. We who love you can hold your sadness as well as your optimism. Just care for yourself well please, and know how many are praying for you, sending love and strength.
    With great respect,
    Elizabeth

  88. Jessica Starkey says:

    I have lurked for far too long on this site. I have read and re-read your last post over and over and over again. I need you to know how you helped me through a horrible time in my life without even speaking one word to me.

    In 2009 when I was 3 months pregnant I noticed a thickening of skin on my left breast. It was red but didn’t hurt. Naturally I go right to the internet to figure out what it could be. One of the first answers was IBC. As I read on, so many women said things like “I only had two symptoms” “the Dr’s said it was nothing” “I waited too long.” I spiraled into a deep dark depression that would take away any joy that was left in my pregnancy.

    I then ran across your website. A survivor, a mother of young children, my hero. I read your entire blog from start to finish in one night and went back every day to see if you had posted anything else. I found a few other blogs but yours was and is still my favorite.

    In spite of that deep dark depression and BECAUSE of your blog, I made an appt with my OB who said “it’s nothing but I can see you are worried so go to this dr.” At this point I said to myself “I want to see my children grow up. I will get what I want no matter what. I don’t care if anyone thinks I am being pushy or bitchy. I will get what I want.”

    My first dr said “this is nothing, I don’t even want to do a test. You are pregnant so there is nothing I can do” I said “I am not leaving without a skin punch biopsy” He said “why do you want that? I know what I am talking about” I said “Because I want to see my children grow up and you might be wrong.” So he did the skin punch and it came back negative which I knew could be a false negative and I asked him about this. He refused to do anything more so on to the next dr I went. The next dr proceeded to only do an ultra sound and called me a hypochondriac.

    I then decided to stop dealing with local drs and proceeded to make two-three hour trips to john’s hopkins. Hopkins said they didn’t know what it was but they were almost sure it wasn’t IBC. At this point I was six months pregnant. I knew that MD Anderson was the best in the nation after all my research but I couldn’t afford to go there. So I found Dr. Cristofanilli’s email on an old paper he had written since it isn’t published on the website. I took a chance and emailed him. He emailed me back within 30 seconds saying send pictures. SO, I sent pictures of my breasts to a strange man over the internet. Yeah…I did that. He emailed back and said “I don’t think it’s IBC either but keep going back to Hopkins to keep an eye on it.” Through the rest of my pregnancy I had two more core biopsies and several other tests. Everything came back negative which was wonderful but I was still scared because I know IBC can fool pretty much anyone.

    I am now an EXPERT on IBC…because of you.

    My son is now 13 months old and I have recently had my breast dr tell me “well we know now it’s definitely not IBC because you would be very sick now with no treatment” SERIOUSLY? WAIT AND SEE??? I am glad I took no prisoners in my search for answers.

    I am sorry this is so very long (I honestly left a lot out…no kidding) but I needed to tell you that your words, your life had been a light in my darkness. Even though I did not experience what you did there is still a dark place in my heart from that ordeal. I think about you every day.

    So when I see a post like your last one I don’t want to cry or pity you because I know you don’t want that. I want to RAGE against the beast that hurts you.

    So please sleep, relax, hug your babies and husband and know there are people like me who have never met you but are still keeping watch. Waiting, at a moment’s notice, to offer support in the middle of the night or good thoughts and prayers. We surround you with a circle of love and protection. I only hope I can give a little bit of what you gave me back to you.

    I lurk no longer.

  89. Steph says:

    Take it back. You owe us NO apologies for anything. ((hugs))

  90. […] in that hazy elderly way. Pictures from a childhood, stories, nearly make believe. As I read her words, I can see the overflowing medicine cabinet, the baskets of gauze and pressure sleeves, the kidney […]

  91. Natalie says:

    Dont ever apologize for what you put in your own space….we are grateful you are willing to share with us and grateful for you. This damn disease affects so many of us….I hate that this community even exists.

    Hoping this treatment goes well for you and that you get best possible outcomes. And for what it is worth….we’re here….I’m here….to listen and read whatever you want/need to share.

  92. planetnomad says:

    You don’t need to end your post in a happy place for us. We can take it. We love you and are praying for you. And we are with you.
    Love and hugs.

  93. kimmer says:

    Susan, I hope the trial goes well and I am sorry you are going through this. This American Life profiled a woman who’s been living with Stage 4 for 18 years. She describes her ongoing treatment as surfing the cancer – switching treatments to contain it at the right moment. The world is full of mysteries. I hope you become part of this one and keep surfing.
    http://www.thisamericanlife.org/radio-archives/episode/425/slow-to-react

  94. Jenni says:

    Ditto Aunt Linda. Screw the memo.

  95. deepa says:

    you are a princess and warrior! Good luck!

  96. This is why I follow your blog. It shows that you’re really human because I can sense the sadness and disappointment. But somehow, you always show that you’re unlike a lot of people in your position – you’re strong. That serves as an inspiration.

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