Tag Archives: patience

Tips to get through difficult times.

What a gift I have been given to be a leader, a voice and a survivor in the desmoid community.

My journey, my recovery, that I was chosen to be the founder and leader of Running for Answers is a gift that I am grateful to have.

My experience with my diagnosis and recovery has helped me to grow up and become a new, different woman by teaching me about healing my body, mind and spirit, and now, I feel, it is a calling to help others in the same way.

Recently, I had the gift of being able to share with a newly diagnosed desmoid patient who is struggling through her journey right now.

My words helped me, again, and I hope they help you.  While this is my advice on journeying through a health diagnosis, I know it has also helped me through other difficulties this year including being a caregiver to someone diagnosed with cancer, watching loved ones die and watching a dream I thought was my future shift and change and die in a certain way.   May you take what you can from this list and apply it to any difficulty you may be facing:


An excerpt from my note to a beautiful desmoid survivor:
Here are a few things I can confirm:
This is confusing and scary and lonely.  Very lonely. 
It is frustrating and depressing and can make you very angry.
It is very difficult to see your body change and not to be as active as you once were.
It will get better.
You are going through this for a reason.
You will be active again.
Patience is the best approach you can have.  Hard, but true.
Lean on others for help.
Accept what is happening.  Be present.  It can be painful, but be present.  Don’t run.  Hear, Listen, Digest, then share.
Be kind to yourself and love your body through this.  It is doing a lot of healing work.  Pretty miraculous body.
Call me, call your friends, call your family – tell them how you feel.  Let it out.  It’s much better out then in.
Through it all remember again and again – you are not alone. Pray, believe, hope, accept.  You can get through this and you will.  Better, more alive and more grateful.
In love and healing,

presence…and reflection

I was given the gift of presence and reflection this weekend.

The gift of being present with my Mom, my Sister, my niece and nephew as we explored D.C. and the wonder of the cherry blossoms.  Present to how precious life is and how grateful I am to live in a fun place and have an adventurous family to explore it with.

While also having the gift of reflection.   In the evenings after long days, I couldn’t help but, due to the circumstances, reflect on pain and how it make us stronger.

Watching my Mother’s strength and pain from all she is enduring right now – ending chemo, starting radiation, learning to live in a body post surgery, I reflected back to just a year ago to when I couldn’t make it through a weekend like this – walking around the city for 2 days without a lot of pain, exhaustion and fear – fear of my stomach being swelled to looking pregnant, fear of when will it go down, fear of what did I do to deserve to live in a body like this, fear of will I ever be the same, and fear of how  much longer can I take this.  I was reminded of that deep pain….and instantly reminded of undeniable Praise for the gift of healing God has given me.

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Touching my stomach before I drifted off to sleep, I smiled remembering all those that prayed for me and the nights I prayed so directly, boldly, desperately to God to heal me, heal this stomach, heal my mind.  And the way the prayers have been answered:  a flat belly back, a healthy digestive system, continued healing of my energy levels and, mostly, the healing of my mind and releasing of fear in my life – trust in God and all things he places in my path.

I’m reminded that through pain you can be given the gift of seeing life through new lenses, beautiful, gratitude-filled eyes.  I know that pain grows us, builds us and brings us closer to Him, closer to His will for us, if we let it, and closer to the Promises of faith, hope, love, joy, and peace.

I feel things these days and I am grateful.  I am grateful for sunshine and fun weekends with family for God’s love and for my desmoid and the experience is has granted me – the opportunity to grow up, stand up, step up into my full self and for the gift of love.

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I am reminded of how important prayer and time with God is.  I ask that you continue to pray for my Mother and her healing.  Pray for all those around the world living with Cancer and their families supporting them.  I guarantee they’ll all be grateful.

I am reminded that asking for help, talking about your pain and difficulty and being open about what you’re experiencing is way more courageous than holding it in, isolating and convincing yourself that no one will understand or that no one else is going through what you’re going through – because they are…and just by saying you are too you could change their lives.  I know, it’s happened to me.  Others vulnerability changed my life.

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How has pain and hardships grown you?  Is there something you are experiencing now that you feel like you cannot endure another day?  How are you coping?  Have you asked others to pray or support you?

How are you celebrating the pain and the gifts it is bringing in your life?

In love and healing,



With love….from Dallas

I am checking in from Dallas this a.m. where I have an appointment at UT Southwestern today.  What a joy it is.


I am staying at the same hotel that just 5 months ago (almost to the day) my parents nurtured me back to health.  Checking in last night reminded me of the anxiety I felt last time I checked in.  The unknown I felt of, “what was I doing?”  Although God was giving me signs that I was doing all the right things, I still wasn’t quite sure how to let go and trust that.  Trust that choosing surgery, again, was the right thing.

This experience taught me faith and trust.


Last night as I laid down to go to sleep, I smiled remembering how last time I did this routine here, I couldn’t roll over on my side and sleep….and I was so frustrated.  I do not sleep well on my back and all I wanted in the midst of the pain of the surgery was to have a good night sleep.  I really only had to sleep on my back for about 2 months (2 months relative to being able to sleep on my side for about 31 years and 8 months = not so long)…2 months after a surgery when all else is in pain feels very long.

This experience taught me patience.


This morning as I did my “workout” = PT exercises and my FIRST FULL PLANKS (applause is accepted!) my natural instinct was to dismiss the accomplishment and my strength as I looked in the mirror because my body is “not at the weight I want it to be.”  My mature self knows, this is ridiculous and if it was up to my mind, I’ll never be the right body size in the mirror.  It’s my thing, I own it, I laugh at it (and cry at it sometimes), but it is – and that is fine.  It makes me, me.  Instead of focusing on this diversion of body, I immediately sat and prayed and glorified and thanked God for all he has graced me with in the last 5 months:








more Love &

……….my miracle – a healthy belly, a healthy body, a healthier mind.

As I prepare to go see Dr. Hoxworth today, hug him, celebrate with him and love him for his role in this journey, I was graced with this reminder today in my inbox from Danielle LePorte:


…and I will because this experience taught me (and continues to teach me) courage.

The courage to…….love me, be me and celebrate this life…..exactly as it is right now…..perfectly imperfect.

Phew, and that is courageous for me.

In love and healing,