Preparing for surgery

How do you prepare for surgery?

The hospital thinks they know.  When you call for your pre-op instructions, they tell you when to stop eating and drinking, whether to take your aromasin and neurontin, what soap to use for your morning shower, what time to be at the hospital, and what hospital entrance to use, and then they ask, “Do you have any questions, dear?”

Why yes, I do.

I have questions.  This week, I have had questions about everything, from, “Will this cure my cancer?” to “How will I know if or when the cancer comes back?” to “What do I tell my children?” and “Should I spend today getting my affairs in order, hugging my children obsessively until they protest, making the house ready for a convalescence, or is it okay to just proceed as if it were an ordinary day?”

Should I do laundry, or review my will?

It’s a minor surgery, they say, outpatient even, and will be no big deal.  I believe that.  It is a minor surgery.  It is no big deal.  Well, to them.  To me, it is probably the last day I can lift things with my left arm, since I have a high risk of developing lymphedema over there as well.  It’s the last time I can lift my children for a hug without feeling guilty, since they’re well over 10 pounds now, and that’s my limit without triggering my arm to swell from lymphedema.  It’s the last time we can remove a body part to remove the cancer, I think, since I kind of need the other ones, unless I get a recurrence in just one kidney.  The next time the cancer comes back, if it comes back, we’ll have to start chemo, and we won’t know when to stop.

Because remember, there is no research to tell cancer patients when maintenance chemo can be stopped.

There isn’t even conclusive research to tell me whether to have surgery tomorrow, to start chemo instead, or to simply continue on with the aromasin or another drug.  There are opinions based on experience — oh, there are plenty of those — and I’ve gotten opinion after opinion from oncologists, nurses, radiation oncologists, advocates, patients, and others who are just looking out for my welfare.  I appreciate it. I do. I feel SO much better today, going into surgery, than I did last week when I got the diagnosis.

I still have questions, but they are now questions that cannot be answered without additional medical research into the nature of this disease.

When I got the diagnosis, I skipped town.  My family and I threw some clothes into a suitcase and the kids in the car and we left for the family vacation that we’d planned for well over a year.  We spent the week in Florida, at the beach, at the pool, together with grandparents and cousins and in-laws, and we smiled and helped the children have a vacation to remember while we, my husband and I, checked our iPhone and our Blackberry and called doctors and nurses and advocates and hoped for encouraging news, conclusive recommendations, or at least appointments with the best of the best.

We were helped a lot by a lot of people.  Thank you. But in the end, it all came down to this:

  • There is no (known) cure for cancer.
  • Cancers are as individual as the individuals that carry them.

The research on IBC metastasis is so new, and so limited, that no one can say for sure, “Do this, not that,” and if they do? Well, they’re perhaps too confident, as there is not yet a consensus in the medical community or papers in the literature.

We need the research.

I will do my part.  Tomorrow, as the six tumors are removed from my body, they will be flash frozen in vials designed to keep them usable by scientists and medical researchers.  The doctors will use what they need for me, and then the rest will be sent to the IBC Biobank for future research or out for the Target Now Complete testing, one of the first to look at molecular markers that may indicate additional options for my treatment.  I’m trying to make the latter work out, but if not, I’ll send it to the Biobank in hopes that it will help someone else.

I’ve checked ClinicalTrials.gov for inflammatory breast cancer trials, and signed up for Avon’s Army of Women to be notified when a researcher is looking for people to participate in studies of new treatments, complementary medicine, or information dissemination, online or in my area.  It’s important, this research, and the Army of Women is gathering 1 million women together who are willing to participate, locally in person or online, with and without cancer, so that the scientists can study what causes, and what cures, cancer.  If you can, please join the Army with me — and say yes to just one study this year if the opportunity arrives in your in-box.

We need the research.  And we need it now.

78 Responses to Preparing for surgery

  1. Spacemom says:

    It sounds as though you have prepared for surgery as best as possible.

    You can keep hugging and kissing your kids even when they protest. It’s your right to do that!🙂

    Yes, we need more research. But how to get it done?
    I will be out of contact most of tomorrow, but I want you to know that I am thinking of you and I hope the 6 are removed quickly and completely.

  2. Stella says:

    Susan – First… I wish I could be there to offer in person support and hugs. You are strong beyond comprehension! Also, I know IBC was your primary cancer but didn’t you walk away from your treatment having had 3??? Perhaps there is another trial you can qualify for as well. Praying every day for you and yours.

  3. ashpags says:

    *hugs*

    Best of luck. I will be thinking of and praying for you! I did an Army of Women survey the other day, and thought of you. Hopefully all of our small contributions will make a huge difference.

  4. Susan says:

    We’re all out here, sending good vibes your way. Soak up all the love and hugs. I hope the surgery goes well.

  5. Amelie says:

    Thanks for sharing. You are an awesome fighter, Susan. And so right — we do need this research. Now.

  6. carosgram says:

    Thinking of you and wishing you the best

  7. Kelly says:

    Armed with the personal research that you have done, only you can decide the next best step for YOU. It is truly amazing, that you are doing so while advocating for the research that is greatly needed and at the same time also thinking of others that could be possibly helped by your decision today. May you be rewarded with many years of NED status.

  8. my whole family is thinking of you!

  9. adjunctmom says:

    Sending you good vibes!

  10. *m* says:

    You are a rock star. It is a privilege to be one of your many, many fans. Sending cheers, hugs, and the most positive of thoughts your way.

  11. TC says:

    I joined the Army last week, after reading your tweets about it. You may not know me, but you’ve had an impact on my life.

  12. CP says:

    I was diagnosed with uterine cancer back in 2000. Prior to my surgeries and subsequent chemo treatments, I focused on getting my house in order for a long convalescence. I made some dinners for my family and froze them. Did a ton of laundry, more than any woman should see in a lifetime. I made sure we were well stocked with food in the house. Basically, just busied myself. It’s scary. It’s intimidating. Most of all, no matter how many supporters you have, it is lonely and isolating. I found myself stuck in my own head quite a bit. Like you, I felt terrible that I wouldn’t be able to lift my kids for awhile (my youngest was four at the time). I knew there were things I wouldn’t be able to do for my family and hated having to rely so heavily on them. My daughter, who was 12 at the time, was an absolute God send. She jumped in like the little mommy and took over! I was so utterly grateful for everyone’s help and good wishes but still felt completely overwhelmed and helpless. Now, ten years later, I am in remission and cancer free, but nary a day goes by where it isn’t on my mind in some form or another. Is today going to be the day it comes back? Is my next ob/gyn visit going to be okay or a throwback to that horrible day of revelation back in March of 2000. Eventually, the constant preoccupation fades, but you never really forget the feeling that accompanies the day you discover you have the dreaded “C” word.

    Donating your tissues to research is such a valuable thing. I wish I had known about that at the time. I would have done my part as well. You are giving so many other women such a selfless gift. That’s something to be proud of for sure. I will look into the Army of Women program to see if there is any way that I can help. Thank you for that information.

    Best of luck to you during your surgery and I wish you a speedy and full recovery.

  13. Kristen says:

    Someone is going to figure this out. Soon. In the meantime, we’ll pray that they get everything out and that your good arm stays good. And we have fried cherry pies too.

  14. I’m so sorry it’s back, but I’ll be thinking of you as you prepare for this next fight.

  15. Niksmom says:

    Susan, I continue to pray for you to beat this cancer and to continue to help others by spreading encouragement, support, and awareness of things like the Army of Women.

    I say my “special” prayers over my son’s crib each night (he’s got some pretty strong guardian angle mojo that kid does!). Tonight, I will add one for you and your surgical team, too. xo

  16. amanda says:

    Just signed up— for you, for me, for my daughters, for a time when your questions can have answers.

  17. Stimey says:

    I’m sending all my love to you. You know that. I’ve also signed up for Army of Women, because anything I can do to help you or the women that come next, is something I want to do. I will be thinking of you all day tomorrow!

  18. magpie says:

    Thanks for the info on the Army of Women; will do.

    Much luck tomorrow – and love and healing.

  19. Meg says:

    Extra thoughts and prayers coming your way from another mom.

  20. Miss Britt says:

    Thank you so much for sharing information about how we can actually help. Going now.

  21. I’m part of the Army of Women now, too, Susan, and I will do anything and everything I can so that no one else has to go through what you and so many other women are experiencing.

    Sending you and your family and the doctors more prayers and well-wishes and love than you can imagine, my friend. Hugs, hugs, and more hugs.

  22. jodifur says:

    Susan-

    I wish there were words to express how much we all love you and are pulling for you. And I hope that helps, somehow.

  23. Mommy Melee says:

    Thinking of you. Signing up.

  24. (((Susan)))

    I am sending loads and loads of good wishes, positive thoughts, and prayers. For what this is worth and I have to have faith.

    In my own individual health journey, which is not the same as yours, or comparable, but a journey nonetheless, I’ve come to a love-hate with the drive to prepare for the truly unpreparable.

    Here’s to the best outcome for you and also to the future of more answers.

  25. Robbin says:

    Six tumors? Co-local?

    I think of you and pray for you EVERY DAY.

  26. Lisa B says:

    Sending you positive vibes for your surgery tomorrow. I’ll be keeping all of you in my thoughts.

  27. JenniferG says:

    You have my support, my prayers and my advocacy. That is a promise.

  28. I remember when my dad was trying to decide whether he should head to Houston for a stem cell transplant at MD Anderson, or stay on the East Coast and go to Hopkins for a bone marrow transplant. Staying on the East Coast meant his family could easily visit and provide support. Going to Texas meant he and my mom would be far from everything they knew, everything comforting.

    And no one could tell them which procedure was RIGHT for him. No one could tell him which hospital was right for him. They could only show him numbers.

    Making those kinds of decisions seems unfair when you have to deal with cancer. If you have to have it, at least there should be a clear path for how to fight it.

    So, I’m going to do my best to get as many friends signed up for this Army. Hopefully we can band together and through science and testing and all that clear a path. My dad was a marine. Marines are the first to land and clear the way. He’d be so proud.

    Janine

  29. upsidebackwards says:

    Best and warmest wishes for surgery tomorrow. You will be in my thoughts every single second.

  30. kgirl says:

    You are amazing. Seriously. I’ll be thinking of you tomorrow.

  31. Joan says:

    Will be thinking of you tomorrow, and certainly am with you in wanting to help whatever research studies I would qualify for.

    Hoping you get through this one smoothly, and can soon resume your positive and productive life with your guys.

  32. AnnetteK says:

    Just want you to know I’m thinking about you.

  33. Michelle says:

    Signed up for Army of Women. God bless you tomorrow and everyday.

  34. Marcia says:

    I will be thinking of you tomorrow and hoping for a successful and smooth surgery and a long lifetime of hugs and squeezes and lifts and vacations for you and your family.

    The Army of Women – survivors or not – is right behind supporting you all the way.

  35. Anne says:

    I’ve joined the Army of Women now too. It’s not much, but it is something we can all do. And I’ve sent invitations to everyone I know encouraging them to join.

    Good thoughts coming your way Susan.

  36. Susan,
    I too have signed up for Army of Women. I actually signed up a year ago and have completed one study so far in that time.
    I will be praying for you all day tomorrow. Praying for skillful and Godly wisdom on the part of the surgeons and nurses that they are able to remove ALL the cancer. Praying most of all for a peace that surpasses all understand over both you and your sweet family.

  37. Bon says:

    i’m an educated person, and i like to think i’m not naive about the curves life can throw.

    but until you…and particularly until this recent recurrence and your patient, urgent explanations of HOW MUCH research matters and why and specifically what we still do not know…i didn’t really get it.

    i do now. i hear. i wish it were more, i wish it were something to offer that could make things better and yesterday, thank you very much.

    it isn’t. but i am grateful to you for teaching me. i am a good student. i signed up for Army of Women, and i will give, and i will take up the teaching and advocating because you made me understand.

    i will be thinking of you tomorrow. and the next day, and the next, as you figure this out.

    xo
    Bon

  38. Kelley says:

    I am in tears.

    I have not been around much lately and then I find this.

    This.

    OMG.

    You are so freaking amazing, woman. And I love you so much.

  39. Velma says:

    Just surfacing to say I’ll be adding my prayers and good vibes to the mix being sent your way.

  40. Thinking of you, but more importantly – paying attention to you. Bon’s right. You are a teacher.

    Love and cancer-kicking stubbornness.
    xo

  41. It is complete crap that we can’t do something about this disease that robs us of so many brilliant minds. I admire you for your strength and for your willingness to to fight–not only the cancer but the culture that does not place enough importance on the research needed to find a cure.

    Don’t give up the fight. Your family needs you. The blogosphere needs you. The world needs you.

    Good luck tomorrow.

  42. Sending all my love and good thoughts your way for tomorrow. I’m clicking submit and signing up for Army of Women right now just in case there is something I can do to help you and everyone else out there. *huge hugs*

  43. Susan (WhyMommy) says:

    Thank you. (I’m still a little scared.)

  44. Lisa says:

    It’s o.k. to be scared, I would be too! This stinks, but I wouldn’t trade any moments with you for anything, thanks for today and tomorrow and tomorrow and tomorrow…….
    With Love

  45. maggie says:

    Hi there..:) I’ve been quietly reading, and wanted to give you a link. It’s from a woman named Crystal Montoya who survived a cancer and then secondary spread that she was not ‘supposed’ to, and talks about what she did exactly that she believes got her there.

    http://crystalmontoya.typepad.com/journey_to_health/

    I am thinking and praying for you, one Mom, one woman to another.

  46. I will be praying for you and your family tomorrow and the next day and the next etc. I am so glad that you went on your vacation and made those memories.

  47. First a big virtual {hug}, then a big swat on your butt all football player-like. Get out there and kick cancer’s ass. I dare say you have your own army of women fighting with you.

    And one more {hug}.

  48. I hope your surgery goes well tomorrow and the recovery goes smoothly. May you have many more hugs and pool side vacations in your future!

    (peeking in from Stirrup Queens)

  49. Stimey's Mom says:

    It is already tomorrow in Australia and I am sending you loving and encouraging thoughts. Go out there and kick some ass.

  50. NYFriend says:

    Thinking of you and wishing for the best possible results of the surgery.

  51. I’m thinking of you and praying for you. I joined the Army of Women and already participated in one (online) study today in your honor and I’m going to get my rear in gear and get my mammogram so I can participate in the BEAM study as well.

    You’ve got the entire blogosphere rooting for you! You CAN do this. You will do this! Many, many hugs to you.

  52. Amy@UWM says:

    I’ve been out of town and just realized my Up With Moms email isn’t working, so feeling hopelessly out of touch!

    I just sent you an email with an offer to talk to yet another specialist — so maybe not so much? Let me know, though. Happy to put you in touch.

    One thing I forgot to send you, but your post reminded me — ACS’s clinical trials matching service. http://bit.ly/aUzje9. I understand our service may be a bit more comprehensive than the NCI one.

    Thinking of you today!

  53. Alex says:

    Good luck (and prayers if you’re into that) with your surger. And thank you for making your post as much about research and ways to help as your experience. It takes great strength to help others during your own battle. I look forward to signing up for army of women. (plus it’s got a great ring to it!)

  54. Elaine says:

    You are a survivor, and you are so strong, and I think the whole world must be pulling for you right now. I’m hoping your surgery went perfectly. I’m hoping you are blessed with strong knees for kneeling down to hug those wonderful children you have. I’m hoping that you feel very supported because indeed, every mother who has heard about your story is telling karma to cut you a break and help you get through this successfully.

  55. Tracy says:

    Thinking of you today.

  56. I’m thinking of you right now and saying a prayer with a smile on my face🙂

    much love,

    Nicole

    Astrophysicists Rock!

  57. Oooh Stimey’s mom said the A word. And damn if I don’t repeat it myself, KICK SOME ASS!

    And I think you should just go with your gut and when your gut feels all confused, pick someone else’s gut you feel you can count on and go with that one.

    I know this is scary. I wish I had a magic wand.

  58. Natalie says:

    I just found out about your blog and your fight against cancer at TeachMama. My thoughts are with you and your family. Good luck!

  59. merlotmom says:

    Susan, I have been away from the internet for a while and just learned about your recent diagnosis and surgery. I met you at BlogHer last summer and really enjoyed talking to you. I have no virtual science project for you but I do send my love and good wishes to you and your family. Healing thoughts your way…

  60. colleen says:

    much love, many hugs, many prayers. The Army of Women just got a new recruit.

  61. I am so sorry that you are going through this again. My heart aches for you and your family. (((hugs)))) and prayers.

  62. Thinking of you and hoping for the best. (and I signed up for the Army of Women) Love to you.

  63. Lisse says:

    Stopping in from PunditMom to wish you the best possible outcome!

    You are so right about the research. And not just for cancer.

    We’ll be pulling for you!

  64. kami says:

    I hope and pray that everything went better than anyone could have hoped for. xoxo

  65. kroliklinsey says:

    I’m with you – we all are! I signed up for Army of Women a week or so ago, right before you got this news, and SV Moms Group (and DC Metro Moms Blog) will be spreading this and signing up like wildfire. We’ll so all we can. We do need the research. I hope everything goes easy as pie today.

    Hugs and love from one survivor to another,
    Linsey

  66. Manic Mommy says:

    Wishing you a speedy recovery and a clean bill of health. Sending you strength and healing.

  67. Susan (WhyMommy) says:

    I’m out of surgery and home again. Just resting; about to go back to sleep, but I wanted to let you all know I’m ok.

    Love,
    WhyMommy

  68. Lauren (diva65) says:

    Sending good thoughts, blessing and hugs to you from up here in CT.

  69. Darryle says:

    Glad to hear you’re home and this part is behind you. Sending love and thinking of you…

  70. Jana says:

    Hello. I came across your blog because I receive “google alerts” that contain any news about Aromasin, and your post was included in the daily list. I am the daughter of a metatatic breast cancer patient. My Mom was first diagnosed in 2002, so I have eight years of experience with the “roller coaster.” (In the process I have taken my mom to several National Cancer Institute-designated comprehensive cancer centers, including MD Anderson at the Univ of Texas, which is supposedly the top-ranked cancer center in the nation.) I want to say two things: I was moved by your blog post. You have an articulate voice. You deserve buckets of sympathy. And two: in case you have not heard of this resource, I highly recommend that you visit the following two websites: http://IBCwatch.evidencewatch.com/ and http://www.NoSurrenderBreastCancerSurvivorForum.org/ The expert in charge of the first site will answer questions from patients on the second site. His first name is Constantine, and his user name in that forum is “Edge.” If you want to ask him a question(s) in that forum, then put his name in the subject line of your post. (OR you could send him a private email and he will answer you.) He has a seemingly encyclopedic knowlege of the latest breast cancer-related research — including international studies. That “IBC Watch” page will show you a comprehensive roundup of the research regarding your type of cancer, but it says that it was last updated in July 2009. (Probably because he maintains about 17 pages regarding various health topics, mostly regarding breast cancer issues, in addition to everything else he does, like keeping track of the latest research and responding to daily queries from patients, so apparently he has not had time to type the updates from the last 8 months on that page yet, BUT (judging from my past experience in reading his posts) I am sure that he is up on the latest IBC research… so I suggest that (in addition to looking at the info compiled on that “IBC Watch” page) that you write to him to ask questions, large and small. In addition to being astonishingly knowlegeable about the medical literature, he is also kind (and surprisingly thorough in his responses). If you write to him, try to include more details about your case — e.g. the key info from your pathology reports (from when you were first diagnosed, and after this latest surgery), like how many of the removed lymph nodes were “positive” for cancer, and the type of breast cancer surgeries you have had, and your age when you were first diagnosed, and your age when this recurrence showed up on a scan, and whether you have had a bone scan or a “CAP” CT scan (CAP = “chest, abdomen and pelvis”) or a brain MRI, etc. I have found him to be an invaluable resource (especially because my Mom’s oncologists are too busy to answer less-than-urgent questions between appointments, and even during appointments, they have little time.) In particular, I suggest that you ask him about curcumin for your case. (There is an enormous amount of data that confirms curcumin’s anti-cancer properties, and MD Anderson and other cancer centers are conducting clinical trials. It’s a supplement that experts recommend that breast cancer patients take, in addition to whatever other cancer medication, to help prevent recurrence.) I am so sorry that you have had to endure this struggle, and I admire your determination to “survive and thrive.” Best wishes!

  71. Thinking loads of good thoughts for you, today and every day.

    PS I joined the Army of Women too – it never occurred to me that women from outside the US were able to join as well, I’m so glad I checked.

  72. Kelly says:

    “How to prepare for life after surgery.”

    We will all look forward to your continued insight and I am hopeful that your recovery time will be short and that your daily life will quickly return to the joyous times before you learned “Cancer.” It is my hope that your surgery was successful and removed what cancer was left behind during your first round of treatment and that you will remain cancer free – at least until research finds a cure!

  73. Gretchen says:

    We’re thinking of you and wish you a speedy recovery.

  74. christy says:

    I just learned of your blog through Kate (big piece of cake). I read this post and hope your surgery went well…I am sending you and your family positive thoughts and prayers!

  75. Sending you and your family lots of prayers.

  76. pgoodness says:

    This brought me to tears. Stupid cancer. It’s not a community I ever wanted to join, but alas, here I am with you. I hope you’re recovering well today.🙂 And those questions? Why doesn’t anyone have the answers to those??
    xo

  77. It’s completely sucky that the cancer has come back.

    What else do I say?

    Well, except, “fuck cancer.”

  78. jessicaapiss says:

    Catching up with your recovery here & via twitter after a family vacation 1 week after yours. This post’s realism is, as usual, full of beautiful and scary and completely important information that inspires us readers, fans, friends to action. i love you. all 4 of us are praying for no lymphedema this time.

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