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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24 Responses to Don the armor

  1. Deb says:

    Wow! Susie, I am sorry to hear that you have received this news! Let your friends be part of your armor as well! I know there are many who are willing and able to go into battle with you!!!

  2. Jack Klarr says:

    As a two-time cancer survivor- fight on!

  3. Leslie says:

    Whoa. As speechless as I am right now, I wanted to say SOMEthing. And that’s this: I know no stronger person than you. You WILL get thru this. Please let me know if I can help in any way (besides prayer, which has already started).

  4. Teresa says:

    Go girl! We’ve got your back! We are on the journey with you – ready for the good days and the bad. Be good to yourself! and let us be good to you.

  5. I want to be on your team, Susie. I am a fighter, though depleted by life’s salvos at the moment. There’s not a ton I can offer except for stubborness and a refusal to give in. I was hit by a new blow today, but have figured out how to conquer it and move on. I hope that you have found my blog either on facebook or wordpress, A widow at midlife: seriously? I’m better at updating on fb. It’s mostly about giving the finger to fate, and living your life. You go, sister-friend, and let me know if I can be of service to you.

  6. Penny says:

    Much love and support Susie. On your team and in your corner. Proud of you. Amazed by your strength and tenacity. Glad you’re a fighter. Thank you for sharing your story. Your life.

  7. Aunt Candy says:

    I can’t believe this. I just can’t believe this. It’s so wrong on so many levels. But I know you have a zillion people on your side and willing to do anything for you including your Pittsburgh family. So please let us know when we can do something to lessen your burden. You are very loved and that helps a lot. Our arms are all around you.

  8. John A. Erdmann says:

    Susie,
    Thank you for sharing your burden with so many. I am a Prostate Cancer Survivor and lost my wife to that dreaded disease six months after we were married! I respect and honor your generosity in sharing what you are facing and will help you in any way possible! I can only recommend that for me and many of my friends that have traveled the same road you must believe you can beat it! The mind is a wonderful thing and it, with the help of God, they can defeat any onslaught! I think those two are or must be part of you armor that will make you win the fight. I will pray for you and your family that are your allies in this battle! I am crying now, but they are tears of joy for the person you are and because I know you will win!

    John

  9. Pat says:

    Susie.. I love your blog. I love that you’re gonna keep us all with you through this and allow us to help hold you up. How wonderful that you’re not gonna gonna keep the anger at this all inside but will vent and throw it out of your head. Ok.. let’s go down this path… you’ve proved your willingness to face the battle and now we’ll prove to you we’re with you.

  10. Aunt Brenda says:

    I am so inspired by you Susie Isley DeSue. Please add me to your Army of warriors and let the battle begin. Keeping you in my prayers.

  11. Susannah Hunter says:

    Ugh. I’m so sorry to hear this news. Please know we are here to offer meals, etc whenever you all need it. Also, my mom went through bilateral mastectomy without reconstruction at UNC in 2005 and might have tips, info or local resources for you if you’re interested. Hang in there, and let us know when we can start bringing the food.

  12. Carolina says:

    Susie trust God there is nothing impossible for him!!!

  13. John A. Erdmann says:

    Right On!
    John

  14. ellen nash says:

    I to have taks. and 2 yrs ago I had a monigrame which showed 5 shadows on my right breast, I was horrified as I had just under gone 2 unsuccessful ops which nearly killed me, so I went for byoppsey and had to wait for results which seemed like forever at the time. I got he results that it was some sort of cowsiam supliments. , I was so releaved. I wish u all the best and keep positive

  15. Michelle Potter says:

    Thank you SO much for being willing to be real, and put it out there, Susie. Kaylee and I want to support you in any way we can, at ANY TIME. I will hold you in my thoughts and prayers. Oh, and next Friday when you come to my house to pick up Carter, I WILL have a bottle of wine open for us!

  16. Katie Colletta says:

    Hugs my strong friend! We are here for you. And wow…..I love “hearing” you write! Can’t wait to hear the spoon story.

  17. Susan says:

    Oh, life is not fair, I guess we all learned that long ago. But really. So not fair. Let me know if I can do anything to help. I find blogging to be a great way to connect with people, many of whom you’ve never met.

  18. Mary Powell says:

    You know that we are all here for you. You may be a Pittsburgh Steeler, but we in the South are the “Steel Magnolias” . And we will stand strong with you! Hang tough and lean on us.

  19. Minerva says:

    This sickness is not unto death, by Jesus Christ stripes you were healed, and sickness cannot dwell in you! I am on your winning team and interceeding on your behalf. YOU WON! Hallelujah to God in advance for the praise report. Also, I am at your service and a phone call away. 🙂

  20. Amy Reeves says:

    Susie! I will be praying for you and know everything will be okay. Please please let me Know if I can help in any way. I can take Keaton, or all the kids, at anytime. Hugs to you.

  21. Kathy Bomba says:

    Susie, Thank goodness I took the time to read your blog. You see, I really didn’t know that much about your health history. I am honored that you will be recuperating in our old but faithful recliner. You are a strong woman who wears her armor well. I will follow your journey and send all my new earned strength your way.

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