Tuesday, June 15, 2010

The news no one wants to hear...

I was debating on whether or not to get my PET scan before my dear friend Amanda's wedding in New Orleans this week because if the news was bad I didn't want it to hamper my excitement and love directed towards the lovely couple.  But this is me we are talking about after all and we know I have no patience for things.  So I had it scheduled for yesterday, and thought in my mind that of course everything would be fine and the New Orleans wedding would be an even greater celebration. 

But, the news was not fine.  Dr. Hamrick called me this morning and told me that my cancer was back.  He asked if I wanted to call my husband and parents into the room before he described what was next.  He was so kind and patient and called me back right away after I gathered the troops (we were at work, and it just so happened all three were easy to find!  just when I needed them, they were there..that's how its been since the start). 

So we listened to my fate yet one more time from him.  He is great at explaining things.  Bottom line is that I have to go see a specialist who treats bone and blood cancers.  Initially, my cancer was spread throughout my neck, chest, and behind the lungs.  This time there is only one tumor, and I think it is actually in a different place than it was before.  It is 1 cm x 3cm and is very close to my heart pericardium.  I can actually feel this, and in my denial state of late I have been just thinking that I have heartburn or something. I never felt this sensation before with my other tumors.  But my heart has been fluttering more lately, and there is a definite sensation there in my chest.  When I touched my chest today there I noticed that it was sore from me unconsciously touching and rubbing it. 

Dr. Hamrick first started out by wetting the strong fires of guilt in us about our decision to end treatment after 10 doses of ABVD.  He said that for a tumor to come back this fast, it means it was an aggressive tumor and probably would have come back even after 2 more cycles.  

So what that means is that I have to change chemotherapy regimens.  They are going to do new drugs called ICE therapy.  These drugs are administered over 3 days every 3 weeks.  I will either do 2 or 3 of these rounds.  After that I have to get my stem cells harvested and then they will do a massive dose of chemotherapy to totally kill every living thing in me.  I'll probably be hospitalized for awhile because my immune system will be kaput.  Then they put my stem cells back and I will be cured. 

Hodgkins has a 90-95% cure rate.  30-35% of people relapse in the first year after standard ABVD treatment, but this secondary treatment seems to be fairly effective at reaching that 90% cure rate. 

So it begins again.  I already have a list of doctors I need to call for appointments.  We are going to go see a reproductive specialist to discuss our options there.  I probably have to get some other sort of port put in for the stem cell transplant. 

I am totally totally fried.  I am angry.  I am pissed that despite my efforts to live a healthy lifestyle and approach this holistically, it has returned.  I feel like going out right now and sticking my face in a gallon of ice cream.  Except that my appetite is totally gone. 

But, it could always be worse.  And I have to keep reminding myself of that.  This will just be a few more months of hell to go through.  I did it once, I can do it again.  At least I have love in my life and an wonderful support group.  I am sure gonna need you guys, I'll tell you that right now.  The second time is a bit harder to swallow. 

Chin up though!  Michael took me home from work and we went out to the garden and felt happy for a moment.  Now we are lounging on the couch just trying to process this.  I am lucky to have him.  He is a work-a-holic, but didn't bat an eye when he saw he needed to be with me at home today. 

So time to pack for a glorious wedding weekend!!!  I was worried that I would be a downer, but I am seeing that it, once again, will be what the doctor ordered.  De ja vu...wedding then treatment!  haha. 

12 comments:

  1. So, my take on Hammbrick's comment about stopping after 10 cycles is that it just shows you did make the right decision. More of those drugs wouldn't have helped... so why go through the abuse of taking them. You called that one right! We try another tac, dear one.
    Love, Patty

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  2. Okay. So you've had a setback. But you can beat this, Evie. It is my experience that the second diagnosis, although no less scary, is a little easier because at least you have a better idea of what to expect. You know you have an army of support behind you!

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  3. We are thinking of you and wishing you good luck in this process. xo Sandra

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  4. Thank you all so much. Patty, thanks for confirming our confidence in our decisions. Margie, I know that it is hard for people to understand unless they've been there, and I know you have. I hope that this next phase is as easy as it was. And Sandra, thanks for your support.

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  5. You're a trooper honey. Face your fear and know it is not real. There is nothing to fear.
    Love, Dad

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  6. So after the expletives in my head quieted down, I realized that my heart was suddenly generating massive quantities of Love. So we also do this again/still and again/still...

    http://www.youtube.com/watch?v=SvsAqkOhI48

    BIG BIG love,
    Becky

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  7. thanks for your words Dad. I need to keep reading them. It is hard not to be fearful, but then I keep coming back to those words, and your love. thank you.

    Becky, ah Becky, what a beautiful song and video. Thank you. again and still. I love you!

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  8. Allow yourself to indulge in the love and support of the huge group of family and friends who care about you. It will carry you through this and on with the rest of your life. Much love,Brenda and Peter

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  9. Thank you so much Brenda and Peter. I do feel so blessed to have such loving support. It blows me away actually, and all I want to do is give it back. Much love to you, Evie

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  10. Sending healing light and sound your way! May love replace fear...know you are loved beyond measure. May the Blessings BE, Deborah

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  11. Thank you Cartic and Deborah. Yes, love replacing fear..you all are helping so much with that and I thank you from the bottom of my heart.

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