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Tuesday, March 1, 2011

I broke into pieces

There was a time where I started to see life come together, where I had a focus, things were on the right track, and I was pretty sure that the light at the end of the tunnel wasn't an oncoming train..................that time was 8am this morning.  By 9:30am I felt broken.  Broken like I had split into two and my entrails were entangled with pieces of who I was...my personality, my friendships, my love, my being....all lying on the floor.   When I reached to scoop them up it was impossible to get everything back where it was before, and I am sure things were left behind. Like a woman who spills her purse, you always leave a lipstick or something lying under a table that will no longer call the purse home.

I broke like I did when all of this started, when my survival instinct fails and all I can do is cry and hope it gets better.  Broke to where hugs hurt and I would rather be alone than have to put others through this pain that is so obvious in my face.  When I explain why I broke you may think this is an overreaction.....I probably would too.  But how I felt mentally prior to my appointment was just so great, I was back to me...the me I hadn't seen in a long time, someone who was happy, and nearing the end of this fucking journey.  I was me who was enjoying getting into shape, eating right and feeling good.......................me.....entrails and all.


having my centinal node injection before my bilateral mastectomy
This morning I had my consult with radiation oncology.  This consult was done as a second thought by my oncologist (while creating my wellness/survivor plan they realized that I had never had one, so I should probably check it off their list) so I called and here we are.  Radiation hadn't been in my treatment plan, with only 2 lymph nodes positive after surgery and my oncologist said that I wouldn't need radiation.

lets stop there.

I should have asked for a referral anyway.  I have always stated to be your own advocate, but here I just let them spoon feed me that statement.   But one person can't know everything, I honestly feel like I failed myself a bit, I know it would have been the same as what I heard today, but mentally I would have been in a different place.  Earlier into treatment I was all-ears to information, open to everything ("show me the research!"), demanding appointments, and would have been in a better place to hear what I heard today, and if I would have felt so inclined I would have added it to my treatment plan...........surgery, chemo, herceptin, radiation, tamoxifen--it would have been planned, I could have prepared for it--or at least understood that it was an option to consider, rather than not even on the menu.

but I didn't.

so I broke.

I was going into the consult thinking the radiologist would just say that all my bases were covered and he wouldn't recommend radiation.  I was wrong.  All I could muster after hearing him talk was mumbly words and to ask for referrals for second opinions....I was stunned, angry, and felt defeated all over again, something I am becoming too familiar with for one lifetime.

So my case falls in a "grey" area with the research.  I am a research oriented person for many things, such as treatment, then I just add in holistic care because it is so important to me--but if it can harm me (such as Western medicine stuff) I want to see the research before anything comes near me.  That is what I did for surgery, chemo, my decision to take both Herceptin and Tamoxifen---research and I will make my decision.   This isn't so clear with radiation. 

I had 2 out of 6 lymph nodes positive for cancer.  The recommendation for radiation is if you have 4 or more positive lymph nodes.  The 1 to 3 fall in the grey area........the research doesn't show a dramatic statistical difference in those who receive radiation with 1-3 positive nodes.

But I had a Grade 3 tumor and I am young.  Those are the reasons the radiologist said that were against me and I may want to consider radiation.  Also that even though only 2 nodes were positive that is still 33% positive, because they only took out 6.  If they would have taken out 20, and still only had the positive 2 then that would be different.

There are other reasons to get radiation if you have less than 4 nodes positive..........but I don't have any of those in my case--so it is just those listed above.

Being young works for and against radiation.   Because I am young, and hopefully have a long life to live I would have to live with the side effects for a much longer period of time (including a small part of my lung not working due to being "killed" by the radiation), lymphedema, skin burning, and I don't even want to talk about the tissue expander's and breast reconstruction shit that can be messed up with radiation.  But "for" radiation, there can be cancer cells that are there and they can multiply, I have a long lifetime for recurrence in my nodes.

So the ball is in my court to make a decision because it is not clear cut here.   But I wonder, when does a radiation oncologist not recommend radiation?  Isn't it always "better" to be sure all the cancer is out of the area.................I ask that in a smart-ass tone, but I feel like it is truthful too---no cancer, that is the best kind.

I don't know how I will come to a decision, when it will happen, or if I will be able to live with the decision I make.  All I know now is I feel broken, so if you see a part of me, please pick it up....I still hope to put it all back together.

7 comments:

  1. blimey is all i can say, its a tough choice but if it was me i would rather get rid of all the cancer than live with a ticking time bomb as my friend says about her breast cancer. She has just under gone breast reconstruction again after her first opp collapsed inside but it was such a hard choice for her to, because although it made her so angry and upset that it happened to her after everything she had to go through her confidence took the worst hit. She said its not an opp she has to have to save her life its for personnal confidence reasons and she nearly backed out, but she went though with it 2 days ago and she is doing well. I don't know why i have just written this all down but if it helps in some small way, Good luck with your decision you have to do what is right for you. hugs dee x

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  2. I would recommend getting a second opinion from the radiation team at UW Medicine. They are the #5 hospital out of 900 for cancer and were a life-saver in our case!

    Praying you'll have an unexplainable peace about the decision you make.

    Love,
    Dianne

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  3. Sending you love and light and wishing you continued strength as you make your decision.

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  4. Dori,
    this is sheri from the retreat. I'm not sure why I was compelled to read your blog tonight-but I did. I've been thinking of you alot, but my time has been consumed by the National Conference that I'm putting on next month.I read it a couple of other times, but today really hit me!
    I totally agree with Dianne-do your research, as you have been doing~~You will be at peace with whatever you decide. You seem so strong and determined to me. The world needs you. My prayers are with you, Dori, for continued strength and wisdom~and whatever else you may need.

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  5. Grey areas are always tough when it comes to big decisions, I'll be on the lookout for parts of you.

    Best,
    Hua
    healthcentral.com

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  6. It's of course, your choice, but I opted for radiation, which really did some damage to my right breast on which it was aimed. However, despite the damage, I was able to have a DIEP flap procedure, and the reconstructive surgeon was able to create a nice breast -- even with all the damage.

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  7. Hey, how are you doing now? I was thinking of you... I too, feel 'broken' after my last 9 days in the hospital -complications with my chemo port (not sure if you read my post) ... i feel for you, being so dissapointed. That's the worst part for sure, not having expected it.

    Cancer sucks ass.

    That's all there is to it.

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