Cancer Maintenance and the Mind Games

*deep breath* Ok so tomorrow I have a PET scan.  And I’m sort of freaking out about it.  Why?  I’m not entirely sure.  I don’t have any specific symptoms screaming “cancer!!” but anything out of the ordinary plants a seed of doubt.  Plants a thought or a twinge that the scan will find something horrible and that this reprieve I’ve been granted will be over before I could even know it.  The day before a PET scan is always the most difficult.

For those new to my story, I have stage 4 metastatic melanoma.  Long, long story short: melanoma on forehead removed 2011, metastasis to neck lymph nodes found in 2013, surgery (full neck dissection with transplant), head and neck radiation, ipilimumab, metastasis (brain tumor, lungs, and hip bone) found in May 2014, keytruda, and cancer has been held at bay for over a year now.  I have officially lived a year and a half after my prognosis said I’d die before Christmas of 2014.  It’s still so wild to think about…

So every three months come scan time we do this all over again: the doubt, the fear, the crazy scenarios that play out in my mind non-stop.  Torturing me with the pain of imagining my own death.  Logically I fully comprehend that I shouldn’t even be here and that I should just be happy with whatever outcome I’m given.  But I’m human, and no amount of time will ever seem like enough.  I am desperate to see my children (now 5 and 3) grow up.  And while that seems like just an insane pipe dream for someone in my shoes, I’m at least desperate for them to be old enough when I pass that they’ll remember me.  Why?  It’s purely selfish, honestly.  I can admit that.  I’ve thought this through many many times and that truly is what it is.  And to make things even better (worse?) tomorrow, when I have scans and a marathon of appointments at Penn, is my husband and I’s 8th wedding anniversary.  What a way to spend it, huh?

Just one blip on the radar could mean the end.  And I’m not trying to sound dramatic, that’s just the reality that I am faced with every three months.  I’ve lived the last three to the fullest.  Everything has been as normal as I could have ever imagined it would be again.  When people would ask me how I am and I’d say, “I’m doing really well!” I have actually meant it for the first time in years.  It’s been fantastic.  And I’m scared it’s gonna end.  That it will be taken from me just like that.  That I’ll be back to worry, fear, treatments, and being physically helpless all over again. 

I will not lie, this is, for whatever reason, a very heavy burden for me to bear.  I almost deal better with things when they’re looking bad.  But now this mounting anxiety is hitting a fever pitch.  Today was my quarterly trip to the dermatologist (only one spot biopsied this time!) and when she asked me how I was doing (I seriously have the best and most caring dermatologist) I couldn’t help but mention that this mental struggle is weighing me down today.  “It’s always the day before scans,” I explain, fighting back tears.  “Well we’ve all been so impressed with how strong you’ve been through all of this, it’s ok to have tough days.”

Strong.  A word I do not think was ever in my life attributed to me before cancer.  Courageous?  Nope.  Brave?  Lol…no.  Inspiring?  Not so much.  But when cancer hit, I knew deep down it was an opportunity for me to grow closer with God and so I believe if these things are seen in me then it is only by His grace and mercy.

So right now, at this very moment, I’m really struggling.  It was moments like this that I would always pull out the very large laundry basket that I had in a closet downstairs that held all of the cards and notes people had given me since the very beginning of this.  I had kept every single one without exception.  Well about a month ago, we discovered that a pipe had leaked in that closet and that everything contained in that basket was completely ruined.  Gone.  It had to be thrown out and I’m just devastated by it right now. 

So I’ll just sit here for a while and cry and then head to bed.  I feel sad and lonely, and although I certainly have no reason to feel lonely it’s just what happens.  I just so desperately want to cling to this normalcy that I’ve been blessed with these past few months.  Of course, if it’s not God’s will then I really don’t want any part of it, but it sure would be nice if it was.  I mean, I’ve so much wanted to distance myself from this cancer and the identity I have in it that I haven’t even blogged in a long long time.  Denial ain’t just a river in Egypt, I suppose.

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I’m just not ready to give this up yet.  And it’s selfish and it’s desperate and it’s not even up to me.  Maybe that’s where the problem lies.  Within this frustration is the realization that I have zero control over my own situation.

God’s gonna have to help me work on this.

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26 thoughts on “Cancer Maintenance and the Mind Games

  1. I love who you are! You are funny and loving! And I deal with tests just like you do. With anxiety. It’s how we are made. If you ever figure out how to get rid of anxiety tell me how. I will wait for it in one of your blogs.

  2. I just know GOD has other plans for you. I will be wearing my pray for KIM t shirt to work at Weaver Markets tomorrow. Will be praying.

  3. Love you doll! Hope you had a wonderful Mother’s Day. That uncertainty and frustration andTrepidation is never there. You are indeed strong. And I know for a fact that the pet scan will come out well. Just have faith And leave it in the hands of God. Your story is nowhere near done my love

  4. Oh wow! I am praying for you. That must be awfully hard. I pray God will give you the strength for this also. You are my inspiration! Keep the faith, fight the fight, stay strong! I tell my 3 year old little girl to say boldly and bravely when she is afraid, ” I am strong in the Lord and God is with me”! I pray God gives you this boldness and peace! Love and blessings to you!

    Hope

  5. I just love your honesty, that to me is strength. You are for real, and that speaks volumes. I enjoy reading you because I know I won’t get fake. I know God lifts up each and every word you say. You have a purpose out here, that’s for sure. To keep the rest of us humble, to lead people to pray, to remind us that only through honesty can the Lord mold us into who He wants us to be. I’d send you 300 cards a day if I could. Just know you are loved- M

  6. Kim, my heart goes out to you. This IS VERY HARD. Rick and I pray for God to comfort you, and give you peace as you travel through tomorrow. I remember this feeling very well each time we drove down to Johns Hopkins for the next scans. I was always so frightened, so dreading what the results might be. But I also knew, like you know, that God walks with us in these frightening, scary places. He is ALWAYS there for us. We pray for good results. Our love and big hugs to you……Adele and Rick

  7. Praying for great scan results and peace of mind for you during this time of anxiety and waiting. God bless, Linda

  8. Scanxiety is the worst for me. I had my 3 month MRI on my brain today and will get results in a few days. I am a stage IV lung cancer patient with mats in brain,spine,spleen and a spot on my hip. I have been receiving chemo every 21 days now since February 12, 2015. Since June, I have been on maintenance chemo. I have prayed for you since the first I heard of you having been diagnosed. Terri Andrew is my niece. Prayers for you and I understand exactly how you feel. I feel great and that is always what scares me. You can’t help but wonder if the little white blip will be there again. I know that the power of prayer is such a wonderful thing and I too share my journey with others. You had no idea that you were an inspiration to me. Good luck Kim.

  9. Hi, Kim, I appreciate your frankness and showing your emotions to others. It takes courage to do that. My sister goes thru a lot of discouragement after having cancer but I share with her your stories and I think it does help each other to know that it’s alright to have these feelings. God knows we aren’t strong enough to face these challenges alone or He wouldn’t have to be there to carry us when our burdens are so heavy. And we all need Him constantly. So crying is good for the body in releasing tension and anxiety. At least I think so. I do pray for you and your family and wish you only the best. Godspeed!

  10. I’m so thankful you are well right now. I was worried! Good to know you’ve been living life fully. I, too, am stage IV, and I totally identify with your scanxiety! I just finished another round of chemo, and I go to MD Anderson in a few weeks for scans. I check your blog regularly, and I pray for you and your sweet family. My approach is to try to enjoy each day with gratitude and purpose. It’s hard to stay out of the future, but that’s why it’s still out there, I guess! You have inspired me and so often your words reflect my thoughts so closely. God is truly using you. Thank you for sharing. There are many who identify. God bless you, Sweet Girl!

  11. I prayed that God’s peace would descend and wrap you like a garment. The influence that you have had with your blogs is amazing. Watching your growth in God has been truly encouraging. God has a plan and God has peace for you. Part of that plan should be the book you will be writing using your blogs and the lessons you have learned. Would you have known what a knack you have for writing had you not had this experience? I pray God’s comfort over you. Florence.

    Sent from my iPad

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  12. And God will help you deal with it–all of it, the anxiety, the fear, the whatever results of the PET scan. He is with you always. And I know that you know that and the anxiety is still there. We go through it every three months also. Maybe the leaky pipe that ruined all your cards and notes was God saying–I’m all you need. (Or maybe the devil ruined them all but God still says I’m all you need.) Prayers today for God’s strength and peace and continued blessings of good health. I believe He has much more work for you to do here on this earth. Hugs!

  13. May the Grace of God be with You~Hang in there Darling! We’re still praying for you! God is with You-remember that. Big Huge hugs!!

  14. All my prayers and thoughts for you sweetie! Hang in there, were all here for you!

    With Blessings,
    Allie

  15. Kim, I’ve been praying for you and thinking about you since your scans earlier this month. I’m hoping and praying that your silence since your MRI isn’t because you got results you weren’t hoping for. Praying for you and your family! God bless, Linda

    1. Linda thank you so much for bringing this to my attention! I thought I had posted something I cannot believe I forgot that’s awful. Thank you so much for praying – I got another clear scan!! So it’s all good news for now ☺

      1. Kim, thank you for letting me know! I’m so happy you got clear results again! God bless, Linda

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