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Sunday, March 13, 2011

fire & gasoline

This was right before I went in for my mastectomy--what you see in my face here is how I have been feeling the past few weeks.
I have found some of the pieces of myself.  It has been 12 days of searching and I found some.  The past 12 days have been full of panic attacks, research, appointment after appointment and moments of complete meltdowns where it took all of my energy to control the bouts of tears, shaking, and gasping for air that came along with all of this.  Scott said "it feels like the cancer has come back"--we were in survival mode, and that isn't necessarily when you think the best--you can't soul search when you are in 'fight or flight' mode.  I asked opinions of people who are very dear to me, I got the broad spectrum of responses I was hoping for.  There isn't anyone who could tell me what to do, but I just wanted to know that other people were thinking about it too--that I wasn't in this alone.

The fear was overwhelming--fear of having to do another "treatment," fear of having to stop tamoxifen (this fear is still taking up a lot of my head space right now), fear that something was missed, fear that I was inadequate in advocating for myself throughout this whole ordeal, fear that I could get sick again, fear that radiation would do damage I couldn't deal with mentally for the rest of my life, fear that I wasn't strong enough to do this, fear that I didn't think that I should do it, fear that I had to face the fact that cancer can come back.

I did break, I did hide under covers, I did drink too much wine, I did have panic attacks, I did get taken over by stress....

I have decided to get radiation.

I don't know where or with who yet, but I will begin radiation treatment at some point in the near future.  I have met with two radiation oncologists (and have two more appointments this week with other providers) to decide where I will do treatment.  After my appointment with the first radiation oncologist I was confident (in what my gut was telling me) that I was not going to be doing radiation.  The research wasn't there and there wasn't enough evidence to support the decision in favor of radiation.  After my appointment with the second radiation oncologist, I felt my gut move and was leaning toward radiation.  The reason for the switch? Evidence.  The first radiation oncologist told me that my tumor margins were negative--which is wonderful! But in the meeting with the second radiation oncologist it was pointed out that part of the margins were positive....................wow.  I missed it, and I have read my path report over 1,000 times. Scott missed it, my oncologists missed it (or decided it wasn't important enough to talk about), but it was there.  Positive margins=evidence.

So unless that was a misinterpretation of the report, I will be getting radiation. I am seeing 2 more radiation oncologists and now, armed with this information (and other questions) I will be able to make the decision for my care.  I am still scared about stopping Tamoxifen, well 'scared' seems like an understatement....I choke up and can't breathe when I think about it.  I have this visual of cancer running rampant and sucking up all the estrogen in my body........we are going to discuss an injection that can shut my ovaries down during the radiation treatment, to help decrease the amount of estrogen in my body.......but it is no Tamoxifen.

My life has gotten complicated again.  I retreated into survival mode and shut down.  I shut down to where it was too exhausting to talk on the phone, where all I wanted to do was sleep so I could shut my mind off, to where "going through the motions" didn't even seem like a possibility--tears always on the brink of falling.  I know that sometimes I am too hard on myself and I know that mentally I can't ever "shut it down" and relax--I am always on overdrive, and even if I am "relaxing" in bed or whatever I am mentally on the go.  I have a new naturopath and she is going to work with me to calm down mentally--something my whole body will thank her for I am sure.  She is also going to help me get through radiation, along with acupuncture, massage, reiki, and a shit-pot of supplements.

Life is complicated.  Shit happens.  In the grand scheme of things I am one of the luckiest people I know--I am surrounded by love, I am safe, I am alive, and I am a fighter--this is just another round--and I am ready for a knock-out.

9 comments:

  1. You ARE a fighter! You can definitely do this, Dori June. Sending you lots and lots of love!

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  2. You can do this, Dori. You have proven time and time again throughout this whole thing just how strong and powerful you are. Hugs.

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  3. I am, as always, sending you strength and peace and clarity. love, sharon

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  4. While cancer might have won round 1, I'm betting on a TKO from you. Go, girl!

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  5. Whew! Glad to see you back in action! You can do this!

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  6. Why do you have to stop tamoxifen for radiation? I wasn't told to stop and took it all the way through my 6 1/2 weeks of rads.

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  7. Dori, I so understand about the fear. I understand about the "shutting down." I understand about survival mode. I guess what I'm trying to say is you are NOT alone. Many of us are "out here." Good luck.

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  8. Dori,

    Thanks for a very candid posting. Every emotion you describe is normal -- I have experienced all lof it. Working with a neuropath and taking care of yourself are good ideas. Sometimes it's good to shut down. Fear of stopping treatments (in your case, Tamoxifen) is normal, too.

    You'll have to update us as to how the radiation goes.

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