Thursday, March 22, 2012

Chronicles


Bleeding mole checked/removed/tested.
Unexpected results from pathology positive. Melanoma Cancer. Stage II
Mapping, wide excision. Sentinel lymph node removed + one
Results from lab. Surrounding margins clear
Not an exorbitant amount of celebrating results due to lack of knowledge of this terrorist of cancers.
Recovery from surgery. Complications with healing. Another procedure to open wound to help heal.
Checkups every three months. Smooth sailing.
One year anniversary of surgery. Dr orders PET scan “just to be sure”.
September 23, 2010. Positive. Cancer. Stage IV. Tumors, one in each lung. Large tumor in liver.
Turmoil.
Confusion.
Fear.
Anger.
Fear.
Sadness.
Anger.
Anger.
Surgery to remove half of the liver.
Recovery.
Appt at U of M to discuss options.
Brain MRI
Positive for tumors.
Stereotactic Radio Surgery on brain
Scans
Stereotactic Radio Surgery on brain
Clinical Trial/BRAF
Scans/Shrinking tumors
Scans/Shrinking tumors
Scans/Changes in tumors
Scans/positive growth in tumors/new tumors/off trial.
Scans
Full brain radiation
Yervoy infusions
Scans/more tumors
Stereotactic Radio Surgery on brain
Zelboraf
Scans/tumors shrinking
JOY

This condensed version of Jillian’s Journey tires me. J

I’ve listed some of the emotions that were experienced with Jillian’s initial diagnosis, but I haven’t mentioned them as we moved forward with her treatments. They are all present, however, plus many, many more.  Until I had a child with cancer, I had never experienced the intensity of these emotions.  And here is where I want to apologize, and to acknowledge my dear friend Mary.

Mary, her husband Ron, and their children, Ross and Jason , lost their daughter/sister, Kristen Joy  to leukemia at the age of 20 on Christmas day nine years ago. I walked that walk with them while Kristen was sick and undergoing treatments. Or so I thought. Now, as I move through this cancer journey as a mother of a child with cancer, I am ashamed. I’m stricken at my inability to see how all encompassing this cancer world is. I’m sorry I couldn’t feel what she was feeling. I’m sorry because I can’t get that time back in our lives, and to be a better friend. I specifically remember a time when Mary and I went out for breakfast together. We hadn’t seen much of each other because she spent so much time caring for Kristen. I loved having that time with her, but I felt as though I didn’t have my friend across the table with me. She seemed distracted, somewhere else. I  recall when she told me she was ready to get going so she could head back to the hospital. I felt disappointed. ARE YOU KIDDING ME? I could kick myself now. You were right where you needed to be. For Kristen, for your family, for yourself.

Mary and I have spoken at length of how being the parent of a child with cancer changes you. I believe you go through a stage of grieving for that lost self. The loss of innocence in a way.

 I’m at the checkout line at the grocery store and the clerk asks me, “how are you”? I think, “do you really want to know”? Should I reply, “My child is fighting stage IV melanoma and she just had full brain radiation”.  Innocence.

I’m at the mall and I see a mother and daughter shopping together. I don’t see any of the worry lines creasing that mothers brow as they talk and share a smoothie. Innocence.

 I observe young mothers walking their baby daughters in their strollers enjoying the unseasonably warm weather.  And I PRAY they never, ever, have to meet Cancer. I could go on and on….. I know that I will never be the same person. The loss of innocence.

Nope, I’m not the same person, but that is all okay. I have grown and learned so much.  I’ve learned about the power that comes from a ticked off Mama Bear, and what it can accomplish.  I’ve learned a TON about my daughter and what she is made of. How she has taught me what true courage is. How she has shown me the face of a true hero. But most of all , I’m reminded over and over of God’s grace and how He works Miracles every day in our lives.

So, after a night of tossing and turning as I mulled over my shortcomings as a mother and a friend, I woke up refreshed. Today I am going to  celebrate the good news we received yesterday.  Jillian’s brain is stable, and her tumors are shrinking. Today I acknowledge the gift of JOY . Today I know that I am right where I need to be.

Much love and peace.

9 comments:

  1. Lost for words....silence,overwhelming need for me to possess Reverend Taylor's 'attitude of gratitude." I feel unworthy . And most importantly Susan, there is grace in you and all around you. I want to take away your pain, but I can't. I will settle for trying to be a better friend and servant.

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    1. You are one of the gifts I've received along the way Valerie. I love you. I love your heart. Thank you. :)

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  2. Amazing as always Susan. You speak constantly of how Jilly is a hero and I believe that truly, but look in the mirror and you'll see another one looking back at you.
    Hugs.

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    1. So sweet of you to say that Becca. Jillian is the true hero here. :) Hugs right back at you!

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  3. Tears and beautifully said....your strength comes through God...if we were left on our own..we'd fall to our knees after going through all of this with our child. Sending all my love to you and beautiful Jillian. She is amazing and so are you. xo

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    1. Kathy, the good news is that we are not alone. :) Thank you for your love and support. Hugs! <3

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  4. I sit here in my hospital bed in my hospital gown with my mom by my side...I just read your blog post and all I can say is as I was reading it, silent tears trickled down my face as I felt the Mamma Bear come out in my mom...Jillian is so lucky to have you as I am to have my mom. Yes! Cancer Changes you...You write in a magnificent tone....I pray for us all, for Jillian. I just met a 16 year old today that I added to BAMW...Her name is Emily Hiscock...A true warrior...She's not supposed to be here and she went home from the hospital today. Jillian should know her. They not only share the same disease which connects me to her spirit, but they share similarities in age.....We are all NOT ALONE. Good for you for seeing the gifts. The gifts show this Monster that it will NOT win. I love you...Thanks for your fighting spirit! Jen Chrisitie...

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    1. You have many mama bears fighting right beside you.:) And I know just how proud your mom is of you. A mothers love has no boundaries. You are absolutely correct. This beast WILL NOT WIN. I love you too Jennifer- and I pray for you every single day. Hugs and much love to you!

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  5. This is the exact same path my dad was on. He was 66 years old. He died 8 days before his birthday. Melanoma stole all the things Ioved about him the most at the end. When I see others with their dad, getting married, graduating college and their dads are watching over them, I just want to shake them and tell them to wake up and pay attention! These moments don't last forever.

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