Monday, January 14, 2013


This past Friday, I was with my mom to hear what our oncologist felt would be the best course of treatment.  A monthly injection is his recommendation and at the end of three months, scans will be done to assess the effectiveness of the shots.

There was lots of information flying around the room and it was fast and furious.  Preliminary pathology was in but there was not final report released.  He explained that he was going to begin treatment based upon the preliminary report and he would also be giving her an injection to strengthen her bones.

As we were discussing the two different medication options, an email buzzed through from the pathologist which he read aloud so we all learned the exact nature of what is on her rib.  That interrupted the bone conversation.  Fortunately, I had a bit of an agenda on the bone medication and I wanted a good reason why a 45 minute infusion was favored over a 15 second injection.  I understand that treatment must always be based upon evidence based science but if all things were created equally, in my mind, time matters.

Unfortunately, newer drugs are not necessarily better drugs and in those cases, the older drug is used.  Mostly, I would guess that is dictated by insurance and what they will pay which is a conversation I will not even entertain at this moment. Very fortunately, I had a bit of a heads up on the bone medications and I was able to do some advance research.  It seems the infusion medication may create  kidney problems.  I saw this and I didn't have a chance to really compare both drugs on what, in my mom's case, is a rather important issue.

You see, my mom was diagnosed with renal cancer in 1987.  It was an "accidental" finding when they were scanning for breast cancer mets in 1987.  The CT of her liver caught a glimpse of one of her kidneys including a mass which was inside that kidney.  She now has one kidney.  On Friday, as four of us had six different conversations going on at once with this email coming in the midst of it, I asked the doctor if one medication is easier on the kidneys since "she only has one kidney."

Conversation over.  "Thank you for reminding me..... yes, she will get the 15 second injection.  The drip drug can be damaging to the kidneys."  He is a rock star and I am confident when things calmed down in the room and before anything was administered, he would have realized this on his own.  He doesn't drop the ball with details.  I just happened to throw the kidney detail out there quicker.

Of course, once again, my agenda was time.  Do we see a theme emerging?  Last week, the time involved traffic patterns. One week later, it involved the time it takes for an IV bag to drip.  Not that it would have bothered me to sit there because it would not have bothered me a bit.  Sitting in the chemo suite to have the infusion.  Not so sure......  THAT may have bothered both of us.  Crisis averted.

And then, the best part of the visit?  The orange information cards MSKCC has available for every conceivable thing.  I have quite a collection.  One for each chemo drug, one for avoiding germs (seems to be a very big deal right now, especially in NYC and in particular within the walls of the hospital), another for assessing proper healing of incisions.... these are all from my own treatment in 2006 and 2007.

On Friday, I walked to the display which is in the exam room.  I was intrigued and when we got to the reception area, the woman behind the desk saw the card in my hand and said, "You have no idea how many of those cards fly out of here and HOW MANY PEOPLE tell me they are so glad to see that they are NOT GOING CRAZY."  I like her lots and I laughed.  If I didn't like her, I probably would have smirked or gone to the condescending place.  Major Major Major Props to the MSK Patient Info Fact Card Team.  You're blazing a trail......

Although they are careful not to mention chemotherapy as a cause, THIS is a start, don't ya think?  THAT... and the card was created in 2004, revised in 2009 and I never saw the thing until 2013.  Where have they been hiding them.... that's what I'd like to know.  And, the part about "might want to limit the number of drinks" if you don't remember what happened after having a few drinks.....  Helpful on the card, helpful for the memory but probably more helpful as a reminder on "girl's night out."  Just sayin'



  1. AnneMarie, you are an amazing advocate for your mother – shooting out the questions and remembering her medical needs. I remember Zsolt did that for me, and he was my hero. You sound kinda hero-like yourself. :)

    1. Zsolt is a keeper and a hero! And you are amazing support for me. Thank you for staying at my side, Catherine....


  2. AnneMarie you are doing such a wonderful job with your mom and I am sure she appreciates and knows how valuable it is to have you there with her. My dad had renal cancer and one kidney - great catch on the bone drugs...(sounds like zometa vs. denosunab). Meanwhile I think you are breathing again, knowing there is a plan in place while there still more answers coming in the detailed path report. Most important I send you and your mom tons of hugs. XoXoXo - Susan

    1. Yes, Susan... good call on the drugs!

      I wasn't going to get all technical with the names... hell... it took me 15 minutes to figure out how to pronouce xgeva!

      Thanks for your support and your friendship.... I appreciate it so much..


  3. dear anne marie,

    i can hear relief in your voice, now that there is a plan in place. how fortunate your mom is to have you by her side to love and support her, and as a practicing and seasoned advocate, able to go deep beneath the surface and come up with cogent questions like the ones relating to her kidney. and to have a doctor that listens carefully and is so responsive must make both you and your mom feel so well cared for. i'll drink to that! but only in moderation, dontcha know - heehee.

    love and warm hugs,

    karen, TC

    1. Dear Karen,

      I'll drink to that, too. Yes, there is a sense of relief. Standing on the sidelines WAITING is awful. Having a plan feels much better than residing in between. The doctor is wonderful. He was wonderful in 2006 when I first met him and he keeps getting better. He listens, he explains his rationale and he answers any and all questions. As it should be.. but unfortunately, not the case with many others.

      Now... how are you and how is Hugh?? That's what I need to know...

      Love to you, my dear friend...


  4. AnneMarie, make sure your mother see the dentist before starting the bone strengthening drugs and that all issues are taken care of. One of the major side effects relating to any of these drugs could be issues with the jaw bones,(it actually has a medical name) so if she needs a cleaning or a filling reworked get it done before starting this medicines. Your doctor probably told you this, but it is a pretty important issue. I wish me and mother lived in the same state, so glad she has you and your family to help with her care. Sending my thoughts and prayers. Your Texas Friend.

  5. AnneMarie, I have been away for the blogosphere for awhile, but I just want to let you know that you and your family have been in my thoughts. I hope your mom is doing fine. Hugs to all of you.


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