Sunday, May 25, 2014

I Really Don't Have Time For This

 
PET scan machine. 
 
I have been putting off writing this blog post for four days now.  I have decided that not telling everyone isn't going to make it all better so I might as well put it out there.  And, by telling everyone I will avoid anymore awkward conversations.  It will stop the battle I play in my mind when people say "So happy for you!" and "So glad to hear you are finished with chemo!"  and "You look great!" and "I bet you are so glad to have this all behind you!"  I battle between just saying "Thanks" or making everything weird by telling the other person that it isn't, in fact, behind me. 
 
I had my PET scan on Thursday.  The results were not at all what we were hoping for, or what most were expecting.  If you remember, back in February I had a CT scan, and the radiologist report was that I was in complete remission.  While that is exciting and great news, I never relied on that as the be all end all.  Even though Dr. Stephens told us several times that he was 100% confident that all the cancer was gone and that the PET scan was just routine at this point, I still didn't let myself believe it was true.  I wasn't going to believe everything was OK until I saw a clear PET scan.  That's why I struggled so much with planning my No More Cancer party.  A huge part of me wanted to wait until after the PET scan, but pretty much everyone was telling me to go ahead and have it because if the doctor was so confident why wait?  So, we had the party.  And it was wonderful.  And I was happy.  It was a wonderful day.  But, about two weeks ago I felt a swollen lymph node in my neck.  In the exact same spot as before.  And, just like before, I felt great and had no signs of an infection.  It was at that moment that I knew everything wasn't OK.
 
Thursday morning was the scan and we met with Dr. Stephens for the results Thursday afternoon.  As soon as he told us to pull our chairs up to the computer screen I knew we weren't getting good news.  He showed us the first scan from November side by side to the scan from Thursday.  On the bright side, 99% of the cancer is gone.  But, that leaves 1% that is still showing up.  Dr. Stephens can't be certain what's going on.  He conferred with three other doctors in his office and they all agreed that their is uncertainty as to what is going on and how to proceed.  So, he is referring me to a Lymphoma specialist at IU Medical Center.  Jeremy asked him if this result is normal and he immediately said, "No." 
 
He apologized several times, saying that he really did expect the scan to be all clear.  I could tell he really did feel bad for us, and for telling us that he was sure it would be clear.  I hold no bad feelings towards him at all.  His words didn't change the outcome of the scan.  He went on to say that if what we see is in fact still Hodgkins then we still have a plan, and that plan is radiation.  Dr. Stephens told me the first day I met him that he didn't want to do radiation unless it was absolutely necessary because of all the possible terrible side effects.  But, when it comes to cancer you have to weigh the positives and negatives of treatment.  For me, knowing that radiation will kill it off for sure makes it worth the long term risk.  Really isn't a choice.  Doesn't make it any less scary, but you still have to do it.   
 
So that's that.  Now I wait to get my appointment at IU and we will go from there.  Definitely not where I wanted to be in this process but it is what it is.  Hopefully I get this appointment soon so we can move forward with whatever I have to do next.  In the meantime I will just keep living life.  That's about all a person can do, right?
 
She looks like how I feel about the whole situation...FRUSTRATED
 
 
 

5 comments:

  1. You are one brave person Michelle. Keep your head up and your attitude positive. You WILL beat this!!!

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  2. Prayers! God's will be done and he will use this and you for his glory!

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  3. Praying for you and your family Michelle.

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  4. Hi my name is Kathy Hatch. I got my breast cancer diagnosis on may 13th. My life has been in turmoil ever since..1st chemo was last Friday. Hospitalized on Monday got out yesterday..Strong med..every 2 weeks 8 treatments...7 to go...Im praying for you an your family...I know how you feel..

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