Past ready

Time is such a funny concept for me.  I have been counting days for maybe the past week.  My mind will think – okay, 4 nights to go…what was I doing 4 nights ago?  Does it seem like a long time since then?  A short time?  Then, last night (or early this morning) when I couldn’t sleep I realized that tonight (one night to go) is just last night and so we are there.

My surgery will start at 7:15 am tomorrow morning.  I need to be there at 6 am.  I am sorted, organized, packed and ready.  I am past ready.  Ready to go, ready to be done, recover and move on.   If only it were that easy, right?

I had probably the happiest day I have had in a very long time on Friday.  I am so grateful that during all the emotional/physical upheaval of the past month, I had a day to relax and just be happy.  My sweet friend, Robin Lin (www.robinlin.com) did a photo shoot with  me for some “before” shots.  I had asked her weeks ago if she had ever done a before/after session for a woman getting a double mastectomy and although she hadn’t, she offered to help capture this process for me.  We laughed through a lot of it, quiet through the rest.  It was calming, sad, silly and empowering all at once.  I could easily shed tears thinking about how much stronger I have become through this process.  What a gift.

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All is well.  My sister is downstairs making dinner, my mom was here for grocery shopping and I am surrounded by my sweet family.  I will update as soon as I am able, and hopefully it won’t be too many days from now.  I know I have said a million times how up and down my emotions have been the past few weeks, even the past few hours.  But right now I am feeling really strong.  And I have all of you to thank for helping me get here.

If it’s a broken part, replace it.  If it’s a broken arm, then brace it.  If it’s a broken heart, then face it. –Jason Mraz

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Countdown

T-minus one week.  Again, a lot of information gleaned in the past 8 days and all of it moved us into the direction of final decisions/actions.  Last Wednesday I saw the surgeon in clinic.  After being so nervous about the final decision day, it was anti-climactic.

*surgeon clears throat….”So, are we going ahead with this?”

“Um, yes, let’s do it.  I just have a few questions about surgery.”   I pull out my full sheet of notes/questions.

*surgeon smiles.  He knows me too well already.

Bottom line: surgery is on for the 28th.  My only question that needed to be addressed over the past several days was a double and triple check (second/third opinions) on my pathology slides from my biopsy.  The original diagnosis of ADH has been confirmed (and double confirmed) and all is settled.   All my questions have been answered.  Things are settled.  I am relieved.  I am ready.  I am scared.

Now on to the boring stuff…..attempt to organize my life in a way for things to run smoothly during my recovery.  Wow.  I do a lot in a day.  It is not an easy process to lift a busy mom out of the equation, even with a very involved dad.  I am currently surrounded by lists.  Lists of what to do before surgery, lists of things to get done this week, lists of dates we need meals, rides home for kids, etc.  I am humbled by the number of people in my life willing to dig in and help.

This week will be tough.  Last load of bras in the laundry have been done.  I had to take a photo.  I will be sad to never wear them again.  I will be relieved to never wear them again.

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This week will go fast.  I have many things to check off the list.  A few friends to share some wine and laughs, to help pass the time.  Celebrate my big kids’ twelfth birthday.  I want it to go fast.  I want it to go slow.  I want to not forget what my body feels like this week.  I want to know what it will feel like next.

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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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The Spoon Theory

A woman with Lupus, Christine Miserandino (www.butyoudontlooksick.com), created the spoon theory while out to dinner with her best friend.  It is the best analogy I’ve heard about managing the demands of daily living for those with chronic illnesses.  My TA friends and I use the term “spoons” frequently in conversation in regards to what we have left, our level of reserves and how to protect our resources/body for future events.  When starting this blog, I knew the term spoons needed to be part of it since “spoons” have become an important part of my thinking in relation to my health and body.  Below is the link for Christine’s story.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Update on me to come…..

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A few details

Seriously, you guys really know how to lay it on me!  I cannot thank you enough for the sweet words, thoughts, and encouragement that have covered me over the past 24 hours.   I feel it.  I know it is there, and I am grateful.

Not surprisingly, I had quite a few follow-up questions today so I will try to answer a couple.  It is not a cancer diagnosis at this stage.  It is a high risk cell type called atypical ductal hyperplasia.   These abnormal cells were found on needle biopsy after a suspicious area was found on mammogram (get those girls squished and get them squished yearly).  In a “normal” woman, they would not even come close to considering a bilateral mastectomy for ADH cells.  Not. Even. Close.  You would get a lumpectomy, make sure nothing else is in there (ie: cancer cells) and keep on trucking.  Also in the normal folk, the risk of ADH on biopsy showing up as cancer after they take the whole area out is about 20%.  My problem is that with my history/meds, my “upgrade” risk that this is cancer approaches 40%.  I have other risk factors (in addition to the ADH) that increase my overall risk for my lifetime.  And lastly, the things they would use to treat it are not options for me.  That is how we got to where we are today.

The schedule as I know it is as follows.  Next week I will get an MRI.  This is done to make sure there is nothing “scary going on in there”.  That was word-for-word what the doctor told me.  Even her using the word “scary” made me scared.  But essentially, more aggressive cancers (invasive) show up better on MRI than mammogram, and the surgeon wants to make sure there isn’t anything worse going on before surgery.  She did assure me that the risk of anything aggressive at this point is very low.  But, I look forward to ruling out the “scary”.   The following week I will meet again with the surgeon.  We will go over the MRI, he will explain the procedure, and we will proceed.  As of now, October 28th is the date they are holding for me.  Like a reservation, I guess.  At a very expensive table.

And finally, I do not want anyone to think that I am in a negative place about all of this.  I feel SO lucky that we realized the nature of my risk/risk factors at a time that we can do something about it.  I cannot believe that with one (albeit large) surgery, I will be able to not worry about breast cancer putting my life in jeopardy in the future.  I cannot imagine what those of us with TA would give if only one surgery would cure our illness.  Please don’t feel bad for me.  That is not my goal.  My goal is to express my thoughts.  Feel mad or angry when I need.  Laugh at the awkward moments, inappropriate jokes and wardrobe follies that are surely coming my way.  In other words, enjoy what we can about the journey, even when the road sucks.  Thanks again for all your support.  We’ve got this.

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Don the armor

I’m not sure if starting this blog will be helpful.  Will it be helpful to me, helpful to others, or just something for someone to read because they kind of know me or have heard about my rare disease?   I really don’t know.  But for now, I have bigger things to worry about.  Like breast cancer.  The most common immediate response I’ve heard?  “You have GOT to be kidding.”

Nope.

I have a high risk breast lesion in my left breast.  We do not know yet if it is cancer, but I cannot afford the risk of an additional surgical procedure to find out.  I cannot afford a second major life illness to take up my time/energy/body/life.  I cannot afford to worry.  Or wait.  Or cry.  Okay, maybe cry a little.

What I can do is put on my armor and fight.  This armor of mine, you see, has served me very well over the past twenty-some years.  It has taken a beating and protected me well.  Takayasu’s Arteritis (TA) has been my opponent since I was 19 years old and at the moment, I am winning.  I feel good, I feel strong and alive.  I was hoping to keep my armor hanging in the closet a little while longer, but I don’t have time right now for complaining.  I need to put on my armor and brace.   So that’s what I’ll do.

These are a few examples of what I heard at Duke yesterday between the hours of 9 AM and 5 PM, seeing 3 different services….  “There is no one else like you; we only have a handful of Takayasu patients, and none of them have had this issue.”  “You are not a good candidate for radiation.”  “No, no, no, no, no, you cannot take Tamoxifen.”  “Hmmmmm, we don’t know exactly how your body would react to that situation.”   “Your body cannot take a second hit.  You just cannot get breast cancer, if it isn’t already there.”

Cliff notes:  “We recommend bilateral mastectomy without reconstruction.”

I wasn’t kidding when I said to brace.

Come with me, friends, on this magical journey called real life.  There will be anger, grief, humor, gratitude and photos in the coming weeks.  Yes, if I am brave, there will be photos (just not bare photos).  What I can also promise is that I will allow myself to talk my way through this.  The down side to wearing armor for so long is the notion that I HAVE to be strong.  Not allowing myself to show weakness, sadness or even vulnerability.  It is not natural for me.  I have too much fun being a badass mother-fighter.  But, in order to deal with what I am about to endure, I need to be real.  That is why I am writing.

Spoons and armor, you ask?  My TA family knows all about my spoons.  I will expand on the theory another day when I have more spoons left to give.

I am Susie, by the way.  I hope this helps us all.

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