Words

Words are not coming easily these days.  The new routine is quickly becoming a cycle.  One day, at the hospital for seroma drainage, more tests, more opinions, more issues because my body is no longer perfect (and the irony is, I never thought it was!).  The next day, paperwork, spring cleaning, a relaxing playdate with friends and kids.  The third, housework, all day long — to catch up from the first two days!  And then I rest.

We went for a brain MRI on Friday, and they couldn’t do it, since they couldn’t stick either arm or hand.  To get the brain MRI, I’ll need a pic line or a port.  But there will be more tests, so we’ll wait to get them all done at once.

Soon, I go to Sloan-Kettering in NY for a second opinion on my treatment.  I’m nervous, I admit.

and the words won’t come.

30 Responses to Words

  1. One of the most wonderful things about being in NY is the food, so if you can’t find words, at least you will be able to find a decent corned beef sandwich.

    The words will come. But first? The sandwich!

  2. kgirl says:

    Even when you’re not able to put words here, know that we’re thinking about you. And yes, as Devra prescribes – a sandwich in NYC.

  3. Corina says:

    I am thinking of you! Be well. As for NY, NO FEAR. You can do this.

  4. marty says:

    The thing about friends – you don’t need words all the time.

    Love you.

  5. *m* says:

    Right now, it’s about the deeds, not the words. You are doing what you need to do. Anything else is gravy.

    You will be in fine hands at Sloan-Kettering. And while it’s obviously no pleasure trip, I wonder if maybe you can squeeze in a treat, like a visit to the awesome space center at AMNH, or even a show, while you’re in NYC? But if not — at least the sandwich.

    Thinking of you and yours.

  6. NYFriend says:

    Hang in there, you can do this. And you can feel good that you are getting input from some of the best specialists in the country.

    I hope you can squeeze in some awesome NYC food too – mmmmm pizza.

    Big hugs.

  7. Sloan Kettering is amazing!
    My dad went there for his treatment after his second round with cancer and is now in remission.
    He and my stepmom both could not say enough about their amazing treatment of not just the patient but also the family as a whole.
    They have a ton of great resources for caregivers and also children with a parent who has cancer.
    I am sending you many prayers, buckets of HOPE, and my words of strength!

    Cancer can suckit!

  8. Niksmom says:

    Sending you loving thoughts, strong prayers. Let OUR words carry you right now. xo

  9. When you need them to surface, I’m sure they will. Take good care. Will be thinking of you, willing that your second opinion is solid, thorough and hopeful.

  10. Darryle says:

    Appreciate your heroism in trying to find words to share when they don’t come. It can also be hard to find words to share with you–to express all the compassion and admiration and love felt by everyone who cares about you and is following your journey.

  11. No worries if no words come. I’m still listening, even if it’s just silence from you.

  12. BetteJo says:

    Sometimes you don’t need to find the words.
    And I’m guessing a hug or a kiss from a little one works wonders at those times.

  13. Adam says:

    You don’t need to go to NY for a second opinion. I can faithfully attest you DO have a brain. See, you’re right…no need to be nervous.

  14. Jana says:

    No doubt you are on OVERLOAD right now… emotionally and physicially… so you’re probably feeling overwhelmed and scared. It’s all so unfair. Unfair that it happened to you the first time, unfair that it came back now. You didn’t sign up for this, so you shouldn’t have to join this club. But I promise you, there is light at the end of the tunnel. As someone who has been in the tunnel for eight years, I can vouch for that. Yes, some of the twists and turns are jarring and black, but after you get back from Sloan Kettering and settle on a treatment plan, you will find your sea legs. The wheels came off the wagon in a very rude way… but you will get the wheels back on track, and you will get to “come up for air.” You really will find new joy… around the bend.

  15. Sara W. says:

    Susan,

    Thinking of you and your family.

  16. Marcia says:

    Sounds like you’re headed in the right direction. I have a port on (inserted in March last year when I started my journey and hopefully gone this summer when I finish my year of Herceptin) and I found it to be very useful. Plus, you can request a prescription for local lidocaine cream that you can apply to the area an hour or so before getting your infusion and you won’t even feel the needle. Hopefully, you’ll be able to insert one and heal from the surgery just fine and in time for your brain MRI (I had one before I started with treatment and found it to be one of the easiest scans to have – besides the MRI noises, you just lay there and can even nap if your mind lets you).

    As for NY, I hope and pray that you’ll have a productive and instructive visit and that you’ll learn about a clinical trial or new treatment plan that will obliterate this cancer one and for all. And as some of the above comments said, it would be great if you could spend some time enjoying the city too.

    Not sure if you’ll have your kids with you or not, but if you do, there’s always the Met, the Natural History Museum, Central Park, FAO Schwarz, and a Lion King or Mary Poppins matinee. I was in NY (from CA) on Spring Break early this month and the trip did wonders for me. I was particularly moved with a visit to the immigration museum and the Statue of Liberty – being in Ellis Island and learning about the struggles of those before us gave me strength, and visiting the Statue of Liberty gave an awe inspiring sense of freedom that you can only experience by being there.

    So here’s hoping for freedom from cancer, freedom from side effects, freedom to express yourself with words that flow freely, and perhaps most importantly, freedom from fear. Keep the faith – I am trying to.

    Praying and thinking of you,

    Marcia (a fellow BC young mom who has been much inspired by your blog, strength, and spirit)

  17. Robin Hurwitz says:

    Sweetie, every word you write is more than enough. You are incredible. Please give yourself a break. You are in the thoughts and prayers of so many. Let our words and thoughts carry you for a while.

  18. You don’t owe anyone an update. Post when you are moved to, otherwise know we are here when you are in the mood.

  19. Jana says:

    You deserve some fun, so when you go to New York, try to squeeze in a visit to “Max Brenner’s Chocolate Bar” (a “bar” which serves any and all forms of chocolate treats, instead of booze). It feels a bit like entering the chocolate factory from Roald Dahl’s wonderful children’s book (“Charlie and the Chocolate Factory”). Even if you don’t have your kids with you, really, this is a great thing to do while you are in Manhattan for any reason. (Adults love the place — e.g. my brother raves about it.) Here’s an excerpt from a description, with the address and hours:

    “A whimsical chocolate fantasy! Whirring machines of melted chocolate spin alongside the dining tables. Tubes carrying chocolate crisscross the ceiling. Everything imaginable that can be done with chocolate is done here. Delicious hot chocolate drinks, with many cocoa varieties to choose from. Kids can even build their own drink.”

    NEW YORK CITY – 841 Broadway (between 13th and 14th Streets)
    For a reservation to dine with us between the hours of 9:00am and 2:00pm, Monday thru Friday, please click the link below. For all other days and times, we accept guests on a first come, first serve basis.
    Hours of Operation:
    Mon – Thurs – 09:00am – Midnight
    Fri – 09:00am – 02:00am
    Sat – 09:00am – 02:00am (brunch is served from 09:00am – 04:00pm)
    Sun – 09:00am – 11:00pm (brunch is served from 09:00am – 04:00pm)
    Online Reservation

  20. Kristen says:

    I took the kids on a glass bottom boat in Key Largo and the whole time I was thinking about how I wished we had one nearby so we could take all the boys. Then Mason tried to jump down onto the glass and Nate screamed maniacally because he thought he was going to fall out the bottom.

    And then I thought, maybe next year. This year is too packed anyway, right? 🙂 we’ll stick to less traumatic play dates.

    No need for words, love. That’s why you have two boys. They just use them up every day before you get a chance to use yours.

  21. upsidebackwards says:

    As a wise woman once told me: “Cut yourself some slack”! 😉 Do what you have to do, enjoy the fun stuff, make time for fun stuff. Just because we all hang on your every word doesn’t mean we forget about you when you haven’t posted for a while. I think about you all the time, and I’m sending lots of hugs, hope and happy thoughts.

    ps Thanks Jana, now I totally want to go to NYC just to check out the chocolate bar!

  22. JessicaAPISS says:

    That’s OK. Sometimes we, your pals, keep throwing too many words at you in cyberspace petty chatter about anything besides what you are going through.

    Just because we want you to know we’re thinking of you all the time. Because we know we can’t comprehend your upcoming battle and the magnitude of what you’re facing. Because we don’t want to force you to have to give yet another individual your medical history. We don’t want to be too nosy, especially when you are still learning yourself.

    But we can’t shut up. Because every tweet about summer camps and girls nights out and blogher and dream dinners is just a roundabout way of saying “we love you. we love everything about you. we are here for you.”

    um, i don’t know why i’m using “we” here.

    so whether there’s no words or too many, there is love. you are loved. you are doing great.

  23. Andrea says:

    Prayers coming from someone you don’t know, have never met, but who loves you all the same. Amazing how the internet makes that happen, isn’t it?

    Love~ Andrea
    xoxoxoxoxo

  24. wooliesocks says:

    Saying a prayer for you Susan.

  25. allison says:

    I keep lurking here, hoping for good news, which is making me feel like a big weenie. I came to this blog right as you were suspecting the recurrence, and I had this terrible feeling that I was a jinx or something, and this immature, livid sense of ‘AGAIN? SO NOT FAIR’ on your behalf. You have such a nice, take-no-crap face and writing voice. I’m putting you on my blogroll and joining Team Whymommy — all in, good or bad. I wish you well.

  26. Amy says:

    My dad went to Sloan. They are wonderful there, trained my BIL, the oncololgist. Holding you in my heart, Susan.

  27. argh. you know what? sometimes a little quiet is nice, my friend, even for a skilled writer. use the quiet to breathe deeply and enjoy these next few sunny days.

    just take it easy–be a lurker and a reader for a bit until the words return. they will.

    :*)

  28. k8 says:

    Holding you close in thoughts and prayers. Had a luminaria honoring you at JMU Relay for Life two weeks ago…it shone brightly…

    k8

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