This is NOT How You Deliver news

Dear Oncologists,

For the record, your patients understand that there is a certain amount of bad news during cancer treatments.  Calling them with false hope of good numbers while concealing the truth of the results is just a really shoddy thing to do.  It’s like…well telling a cancer patient things are shrinking when they aren’t.  I know, crappy example, but right now I’m frustrating with your inability to communicate with the people you care for.  It’s utter nonsense to build false hope in those that are suffering.  What is wrong with you that you can’t face the facts that sometimes you lose?  Why can’t you discuss the bad with us without building up the utter nonsense you like to call stable?

Kindly pull your craniums from your rectums and treat patients with respect.  It is not respectful to tell us things are getting better while hiding the fact that they truly aren’t.  It is not respectful to instill false hope in people who are pleading with you for the truth.  We demand honesty and respect.  You promised to do no harm; breaking our hearts is more harmful than lying to inspire us to push on through the fear and pain.  It is wrong to give us a false sense of security.  We will no longer tolerate it.

Sincerely,

A Really PO’d Cancer Patient

***

Today, Dr. Brooks was out of town.  I almost wish they’d just stop letting me come to chemo when he isn’t there.  Or better yet, let’s skip the stupid appointment part, dump in the chemicals and let me go home.  I’ll talk to the doctor or no one else from now on.  Linda, as always, continues to be useless.  She can never answer my questions.  I can’t imagine I’m out thinking a woman who has trained in this field so either I scare her with my questions or she’s literally not permitted to answer them, which makes her useless.

She did, however, have the ability to pull up my MRI and CT results from Tuesday.  I, of course, wanted to see the numbers that were “minimally better” than the last scan.  I’d put all my eggs in that basket before; I wanted details.  Why?  WHY must I want details??

The CT scan showed that the mets in my lugs are larger.  Not grossly so, but larger all the same.  The first was 8x11mm and is now 11x13mm.  The second was 11x14mm and is now 16x17mm.  There are some smaller nodes throughout the chest and some in the fat around my diaphragm –awesome, even my fat has cancer!– but the rest of the test was about the same as last time.  The grown in the tumors, however, would explain my cough, chest pressure and pain.  I thought it was too good to be true that things were getting better, even if better was just stable.

The biggest blow, however, came on the MRI findings.  The numbers are slightly better, a few tenths of a centimeters change in the tumors.  That was the glimmer of hope in an endless sky of darkness.  The MRI picked up on “two T2 hyperintense, T1 hypointense enhancing lesions within the L3 vertebral body, compatible with metastatic disease.”  For those that don’t speak medical crap, that means they have found cancer moving into the bones of my spine.  This is not good news.  This is ten car pile-up type news!  Cancer in the bones is seriously impossible to fight.  Bones aren’t as vascular as other tissue so it is much harder to deliver medication there to beat the tumors.

So, what does this mean?  What do we do next?

Remember Linda?  Yea, not so helpful with those questions.  I asked if there was any chance the tumors in my lungs and on my spine might not be the cholangiocarcinoma, could we have a second primary tumor we are dealing with?  After all, they aren’t responding to the irinotecan despite the fact the liver tumor appears to be.  Carla had a great response to this; the liver is highly vascular so she thinks that the drugs are working better there due to access.  Lungs, to me, are pretty darn vascular too, so I’d like to think it should be working in my lungs as well.  I just wonder if maybe we should biopsy and compare what is in my chest to what was found in my liver to be sure.  Linda wasn’t sure about that.  She wasn’t sure about getting consults to surgeons or finding doctors worth giving me a fighting chance.

I’ve spent the last few hours crying.  I feel like we’re moving further away from where we were seven months ago when this all began.  It’s hard to keep being hopeful when my results get worse and worse each time.  Maybe I just need to stop letting them do scans so this all comes as a huge surprise when I stop breathing or something…

Milo is being his awesome self.  He told me he will love me if I end up in a wheelchair because the tumor crushes my spine.  He’ll even lift me on the potty.  Because that right there, ladies and gents, is true love.  I just…I wish he would just turn and leave.  I don’t want him to remember me as the woman he had to take care of in the end.  I want him to remember the fun we had.  I know this all is morbid and a little melodramatic, but when the news just gets worse each time, I find it hard to think that things will suddenly improve and we’ll have our lives back the way we planned.  Milo deserves better, we both do.  I’m just not sure how to get there anymore.

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8 thoughts on “This is NOT How You Deliver news

  1. Malika says:

    Janine, love, I’m really really really sorry. You are really taking this better than anyone I know. I have been at a loss of words, crying whenever I think about it. I’m soooooo grateful that you have the most wonderful and caring husband in the world. You know I am here for you if you need anything. Please, Janine, don’t be afraid to ask. I admire your courage and your strength and can only dream of having that if something bad were to happen to me. You ARE an inspiration and you definitely have the right to be angry. If I continue writing, I’m not sure what else will come out and don’t really know what else to say. You ARE my best friend, here, and I couldn’t have dreamed of a better friend to spend my AZ (and possibly MO) days with.
    With much love,
    Malika

  2. Julie says:

    Janine, I also have cc since May 2010. Never operable. Started with xeloda, nexavar and grnzar for 19 months . It kept everything stable, no growth. Then things changed in dec. and I eas full of pain. Scan was still good, but my body told a different story. I was switched to 5fu/oxiliplatin in jan. had first scan and things stable. My cc is in liver, lungs, and peritenium. Feels like lesions in stomach area growing and that’s the pain. Starting on pain patch and dilaudid today . I have all of the feelings you write about. 49 at diagnosis with a wonderful husband and 16 and 19 year old children. They are my biggest concern, how will they go on without me? Yesterday my once yelled at me for being anxious and crying about ct. He said stop “pitying yourself, your not the only one with cancer. His PA is wonderful and she told me to tell him to shut and tell him I’ll cry if i want. I went to the dr. At least 5-6 before cc
    And no one found anything. I also have anger and guilt that I didnt know.. Wanted to let you know I agree with everything you say and love reading your blog. Had chemo yesterday, so nausea and vomiting today. Better go,
    You’re in my thoughts

    • janined23 says:

      I am so very sorry that you too are going through this. I was fortunate to know not to trust my PCP and find a doctor that believed me when I said something was certainly wrong. It makes me feel better to know these feelings aren’t mine alone. We have the right to mope sometimes and I try to pull out of it as soon as possible, but it certainly is difficult. This doesn’t seem like someone my age or even your age should have to go through. There’s still so much life left to live!

      I appreciate your comments and that you found my blog. My chemo was today; fun weekend ahead for us both.

      You are in my thoughts too
      Janine

  3. Mary says:

    Reading this made me cry. I am so sorry for such sad news. I wish there was something I coould do or say to make it better for both you and Milo. Hugs to you both, I’ll keep praying!

  4. Mary says:

    It will get better!!!!!

  5. jdp64 says:

    My girl, when you cry, I taste the salt. When you hurt, so do I. I know that you are angry, and sometimes I find myself punching walls, it’s not fair, NOT FAIR that my wonderful daughter has this. WHY? The one child that loves me completely has to suffer? I don’t understand this any better than you, hon. I only have my faith to get me thru this. Remember, though, that as long as there is life, there is hope.

    Again, I am so thankful that you have Milo. I knew the first time I met him at your party, that he would be more to our family than a friend. He belongs here, with you, for a long time. He is as much our son, as you are our daughter. We will be here for both of you whenever you need us, and whatever you need us for.

    We love you both, very much

    Mom and Dad

  6. Lyn says:

    I love both you and Milo so very much and can’t express how sorry I am that you are going through all of this. You are continuously in my thoughts and prayers. XOXOXOXOXOXO

  7. Cora says:

    I am sorry that you are going through this. Chemo is a nightmare and then to not have it work bites in the worst way. Thank you for writing about everything and sharing your thoughts.

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