Trusting me

The range of emotions this week has been high and low.  I am clearly out of the denial phase.  This is no longer just something I am talking about, the latest news, the hot topic.  This is real.  And my real attempt to prepare for something with which I have no idea how to prepare.   I will do my best to try to explain why this past week has been difficult, how I have dealt and what I have learned about myself.

First the good news; I had an MRI this week and it looked just fine.  No other areas of concern.  No masses, no malignancies.  I must admit, I was feeling pretty cocky about my attitude (you all have pumped me up) that I was unprepared for the hit my mood took while going to the cancer center for that scan.  Just putting on those damn hospital gowns seems to put me in a down mood.  Add to that a difficult IV stick and all of a sudden I wasn’t sure I could handle any of this.  A few days later I received my MRI report and while reading that everything was normal, I had a moment of “what am I doing?”  I think my biggest struggle with this is that in the end, it is MY decision.  Multiple experts have spelled out the data, given recommendations, provided me with information, risks, benefits, options and opinions.  I have reached out to friends, additional experts, done endless research and ended up with similar results.  It is my decision to make.  Not an easy task, my friends.

To say that I have spent hours, even days with this on my mind, would be an understatement.  There are so many “what ifs” in this scenario, it is impossible.  What if it never becomes anything?  What if I take off my breasts for “no reason”?  What if I do develop cancer?  What if this already is?  Would I regret not being proactive?  Will I regret doing this surgery?  What if I would need surgery in the future while Takayasu is unstable?  What if any of the future surgeries triggered a flare?  What is this surgery does?  What? What? What?  Too much.  What I have become sure of this past week is that for me, a woman with a very rare, very unpredictable disease, this potentially cancerous/benign area of cells that put me at higher risk for developing breast cancer is too much for me.  Too much for the ALL of me.  Not just for my body, but for my mind, for my responsibility to protect my body’s resources (remember the spoons?), for my need to protect my children’s mom and husband’s wife.  And what I have learned this week (okay, maybe just today as I write this) is that I trust myself.  Whew.  No idea when that happened.  But I know that I have become a real grown-up who needs to make real grown-up decisions.  I trust my feelings, my instincts, my education, and my abilities.  I know that in a few weeks when I have my breasts taken off, there will be no looking back because it is the right thing.

So you do not need to worry about me regarding this decision.  I have done the work, and I have considered every option.  I appreciate all the love and concern, and I don’t for one minute think that anyone who has asked about other options did it out of anything other than wanting the best for me.  Am I ready?  Probably not.  Do I want to go through this?  Nope.  But, it is the best decision.  Trust me.

I said at first I was trying to prepare.  I do not think that is possible.  I have a friend who has offered her talented, professional photography expertise to help me document my body in the next weeks.  I have begun internet research on what I might need down the road.  The best clothes to wear after surgery, my options for breast forms (okay, really funny and I must interrupt….I spent 20 minutes on a site before I realized the breast forms I was researching were for cross-dressers – and the measurements were for “male” chests.   Oops).  I have started shopping for post-op jammies, things to wear when I cannot raise my arms easily, and tank tops.  Each time I shop, I end up with a panic attack in the store even thinking about my future reality.  Not to put too fine a point on it, but it will be quite a big difference.  I am mourning.  I am preparing.  I am listening to a lot of Jason Mraz on repeat (Details in the Fabric if anyone needs to chill).  I am making sure I have photos to show my kids of them nursing.  It breaks my heart one minute, then the next I am amused to realize that I am looking at every single woman’s chest that passes me.  You know how when you are shopping for a car, you start noticing every make/model of cars on the road?   Sad but true for me and chests.  I’m sure I will adjust.  I will find clothes that work.  I will find something that makes me feel normal.  I am amazed at this process.  I’m sure I am not done being amazed with what will come.  I am sure that I am grateful for all of you.  Thank you for reading, commenting and thinking of me.

I see the surgeon on Wednesday and go through pre-op studies.  Barring any issues, we will have a firm surgery date after that appointment.

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13 Responses to Trusting me

  1. Leslie says:

    It must be an awesome feeling to know in your heart that you’re doing the right thing; to know you can trust your own instincts and knowledge. You amaze me.
    Continuing to pray.

  2. I agree with Leslie. Being a grown-up stinks sometimes. But not being at the mercy of someone ELSE’S decision is always better. You’ll still be wonderful Susie no matter what. You’ll still be able to see, taste, hear, walk, run, kiss, hug, love and use your wonderful mind. THAT’S who you are. That’s who we all love.

  3. Dad D. says:

    Wow. YOu Are Strong. Please Know That We Are All With And Care About You. We Pray And Know All Will Be Well.

  4. Pat says:

    How exhausting this first stage is for you having to looking in ever corner of this and get into the decision. Let me throw my three A’s at cha that my sweet Dr. Yatsu gave me and I’ve lived by… AAA… Acknowledge (the decision is made and you have acknowledged that decision); Accept: accept that this will change things and this path is to be taken; Adjust: adjust your attitude, find the Susie that’s not connected to the body and she’ll take you through it. Your normal hasn’t been “normal” for a very long time… you’ll just have more of your own normal. LOve you.

  5. Jan McMahan says:

    Wow is right Dad D. And Pat – the 3 A’s are always a great reminder to all of us. Sending prayers of continued strength your way! BTW – I do have a very good friend that went through this about the same time I was first diagnosed with TA. Find myself getting jealous because through all the surgeries, the chemo, radiation, re-construction….she is now cancer free…..and I (we) still sit and wait, day in and day out, for the “next” occurance, problem, flair…….. But if you need someone else to talk to in that area of the experiences of this surgery, I can put you in touch. Love you!!

  6. Kristy gusick says:

    Bless you Susie for having the courage to go through this… And for having the courage to share your raw emotions with us. I am overwhelmed with emotions. I am so proud of how brave you are, but also so sad that you have to go through all of this. As your older cousin, I just want to do something to make all of this go away for you! But Providence knows best in the end, even if it doesn’t make sense to us here on earth. Much love and blessing to you Susie. And know without a doubt you are much loved and prayed for by your extended family 🙂

  7. Dana says:

    I trusted your thoughts the moment you started speaking about this. Funny how you just realized this. You are so much more than you understand. Your friends and family already know this and in time you will know this. Love and light to you

  8. Natalie says:

    Thinking of you all Susie and this brave, tough decision you are making.You are one strong Badass mother! xx

  9. Cheryl Hudson says:

    Thinking of you Susie. Thanks for sharing with all of us. Smooch.

  10. Katie Colletta says:

    Susie, so proud of YOU and trusting your decision! What a strong example you are to all of us and your kiddos, even on the hard days. Much love sent your way!

  11. Carleen says:

    Susie, sitting here with tears running down my cheeks. You are an inspiration to us all. I love you dearly and wish I could be with you during this difficult time. I am so proud of your difficult decision, and I’m so glad that you are comfortable with it. You will get through the difficult times, and come out the other side soon.

  12. Roberta Parrott says:

    You will be fine. Just take it minute by minute if you have to. I still freak out when I have to go to the cancer center… even if it isn’t for me! Just know that we all have your back when you need ANYTHING!

  13. Jen says:

    Susie- I would be remiss if I didn’t first say, you are an amazingly talented writer. If you aren’t already, you should explore this talent further. You can truly inspire. Quite simply, I’m here for you, for whatever you may need.

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