Tuesday, January 8, 2013


It is my routine to write each day.  I'd like to stick to that routine if possible.  It may not be possible for obvious reasons. If you missed yesterday's post, you might want to take a peek.  The obvious reasons will be immediately, ummm obvious. Reading the title will suffice.

For right now, there is nothing to update.  I expect an appointment with *our* oncologist will be scheduled today.  I expect it will be for some time later this week or early next week.  Until the pathology is complete, there is nothing to discuss. No sense wasting a visit.  I am reminded of the first words I ever heard from the radiologist who did my biopsies in May of 2006.  You can all say it with me as they are words we all know, we've all shared:

Waiting is the worst.

So many things buzz through my brain and then, the aha! moment.  NOW I understand what she meant about that waiting stuff.  Do I Ever..... Cancer does many things and one of the things it does exceptionally well?  Like it or not, the patient learns patience.  Or, the patient resists, insists on IMpatience.  And just lives in a state of constant angst and misery.  I choose to do my best to be the patient patient or the patient patient advocate.  I may not always succeed, but I will be mindful.

As for the angst, the misery, the outrage?  I'll save those emotions for times when I really need them.  I think I've been bouncing among those emotions (along with a few others) over these past four days.  They were and still are warranted.  I have to wrap my brain around this.

I know I'm fully prepared to spring into action.  I know I have a wealth of knowledge.  I have a deep and diverse group of friends to whom I might turn for guidance.  I don't know what it feels like to hear "it's back" but I can safely say, I've gotten pretty damn close.  Sucker punched.  That's what Kathy Bates said when she addressed the group at Sloan Kettering.  Sucker punched, blindsided but not thrown off my game.

Thanks are in order to all who have continued to leave comments, to send email, to tweet words of support.  My mom emailed me last night and was "completely overwhelmed by the blog comments."  I will let her share her own thanks if and when she would like.

Before I sign off, I want to share two links.  These were published last Thursday and Friday.  One of them is about the importance of biopsies on distant recurrences.  The chest tube and the lung puncture were necessary evils when the oncologist insisted he needed those samples.  And the PET/CT scan combo that the oncologist ordered has emerged as the single most important modality to check for distant recurrences...

For my medical geek buddies:

The Value of Checking Distant Metastasis (via Web MD because I REFUSE to pay for publications in the Journal of Clinical Oncology or any other publication and can someone set up "advocate access" to these high priced publications????  Who wants to step up....)

Benefit of PET/CT to acquire an image to tailor specific needs of each patient (via Health Imaging because I REFUSE to pay for publications in the Journal of Nuclear Medicine... see request above....)

I know my mom is in great hands.  These were the first steps taken by the oncologist to find this spot.  I'm sure step three will be equally cutting edge.  Major props to MSKCC and major, major, MAJOR props to the very fabulous Steven Sugarman, Rockstar Oncologist Extraordinaire.


  1. Yesterday I received the latest Cure Magazine in the mail and it came with a supplement on metastatic cancer. I have not had a chance to read it yet but it does look full of good information. Hugs!

    1. Caroline,
      I am going through my mail now. Is there any surprise that it is piled sky high? The last mail I brought in was on Thursday. My mail comes very late. Friday's mail obviously never came out of the mailbox. Saturday.... is piled on the table with Friday's and Monday's was put on top of THAT. Lots of magazines, etc. Going to check now...


  2. I remember talking at the cafe in Brooklyn and you were telling me about the wonderful oncologist you had . . . I'm so glad to see that your mom is still receiving excellent care.

    That bit about saving the angst, misery and outrage for when they're needed . . . that's very wise. But if you ever do need to rant, we're here to listen :)

    1. Thanks for that reminder of the cafe. Never mind the conversation, but you just transported me to a very enjoyable memory. I believe we call those "mental vacations" .... I'm going to make a list of places I can "go" when I need to calm down. It's a good tool!!

      As for ranting, I know the rants are heard and we can quickly all turn them into a "rant mob" which is always good. Generally, it ends up with laughter. I don't know how or why that happens, I only know that it does. Invariably, someone says something and it diffuses everything.

      Thanks for being here with me Catherine....


  3. I had trouble commenting on your last post and finally gave up (my iPad & your blog weren't communicating very well), but want you to know I'm thinking of you and your mom, and I know she's in good hands and that she's lucky to have you on her side. I love that you're loud, determined, and unwilling to accept the status quo, and I betcha Mom loves that too! Hugs to you both.

    1. Nancy...
      I have trouble with my iPad, too... which is a challenge if I want to WRITE something for the blog when I'm on the run!! Wonder what's up with that...

      There will be no settling for the status quo. The doc knows he's got his hands full!!



  4. AnneMarie I agree (didn't try to rhyme)...waiting for test results is the hardest thing to do when it comes to cancer. That said since we know you are in the right place with the best oncologist all we can do is wait and keep wondering. Just remember to be kind to yourself. The waiting stress is unbelievable and where the mind goes.... On the one hand you have been given a pile of stress and yet you are told, "keep the stress out". Grrrrrrrr. Meanwhile also understand you and your wonderful mom are still in shock. The answers will come and there will be a path that can be followed. Much unknown, yet still with so many of us praying in whatever way we can for you, your mom, your family and friends. I send you so many hugs and I know I will get to give you them in person. XoXoXoXo-Susan

  5. Hi AnneMarie,

    Does Sloan-Kettering have a medical library? Or perhaps there is a university medical school nearby? Very often they allow public access to their library and various article databases. You might have to pay to print them out, or you could download pdfs of the articles. I used to be a research assistant to a MD who was working on his phD in medical history, so I used UCLA's medical library a lot.

    I've been waiting two months to find out how effective the whole brain radiation was and what happens next. It's been a torturous emotional roller coaster.I'm sorry you and your mom have to be on it. Are they comparing your mom's biopsy sample to her original cancer?

    Love, Acacia

  6. AM ... sending much love to you and your fabulous mother (though I've not had the pleasure of meeting her yet, she has to be fabulous having had you as a daughter!). You are coping as well as can be expected and I am proud of you. Yes. The anger must be reserved for when it is needed and there is nothing worse than waiting. And I dare say, being on 'the other side of the gown' is a completely different experience. Acacia had some great ideas about resources and I'll ask Robson the next time we speak. xox


Something to add? Do Share!