Thursday, May 17, 2018

filling the pages



I woke up to hear Rick's voice whisper to me "Happy Mother's Day."  I smiled as he sauntered off to make coffee.  But then I went to sit up and my stomach lurched.  The nausea washes over me in a deep surge.  I begin to cough,  and cough.  "Oh no, I think, here it comes!"  I then begin to heave and gag.  Vomit looms as I clutch at the side of the chair shifting my position.  Its a good 10 minutes before it unceremoniously subsides.  I'm sweaty and my heart is beating fast.  But I didn't vomit this time.  I let my stomach settle and am about to get up to go to the kitchen when the movement once again sets off another attack.  Here we go again.  And yet, just another few minutes and I'm able to sit and sip at my coffee as if nothing has happened.  This time I got off lucky.  Earlier this week, I had 3 hours of repeated vomiting and heaving and I was unable to do anything else that day, even when the grips of it all left me spent.  But we managed a few hours of watching as Rick planted flowers outside in my flower beds, and bought a vase full of fresh cut flowers for my to enjoy inside.  My family was in and around me throughout a busy day, and I loved how they met me right where I was.

But when I highlight these types of yucky events for Dr. Panwalkar?  Theres nothing he can offer me.  Compassion and concern line his face, but his words are sparse.  "You're in unchartered territory.  I don't know what we can do for you."  His words referring to my PET scan was that it was overall "much worse."  I had many new areas of progression throughout my system.  The part that likely has to do with the vomiting or vaso vagal spells, is a tumor or mass that is by my colon/bowels that is triggered when my bowels move.  It puts me in a precarious situation most of the time.  How do you go anywhere when these symptoms crop up announced?  And they're so unpleasant to have and for anyone to witness.  Rick is such a trooper, offering Kleenex or water, meds, or Nausene to see me through.  But these spells won't likely go away on their own.  They loom in front of me all day long.

Dr. P simply says we will switch my treatment to to the immunotherapy drug called Keytruda.  I mistakenly thought it was oral, but its infused.  I had my first infusion two weeks ago and it went well.  I simply don't feel well, despite the new treatment, not because of it likely.  

So how do you plan your day?  I hover between my chair and the bathroom mostly.  I'm just hanging in there, trying to string together a few hours that I feel ok.  But its a struggle.  I've had to cancel many visits at the last minute, as my stomach sits churning.  I will see Dr. P again in a week and will report the worsening effects but not sure there will be much we can do if I want to continue on with treatment.  Its a hard place to be.  And its why I'm so quiet in this space.  I still long to know that somehow I have something to offer in this time I've been given.  The boys seek me out daily and I love all the time we spend chatting away.  They're affected by all of this, and yet resilient at the same time.  I love them so.

As a couple of days pass, the nausea bouts are still prevalent but I get through them more quickly it seems.  But now its my shortness of breath concerning us all.  I'm quite swollen in my legs and feet and my arm on the right side.  Maybe its affecting my lung as well?  Despite using Oxygen supplementation during my waking hours, I still get so short of breath all of a sudden.  I will find out more when I see Dr. Panwalkar on Tuesday.  But that is as far out as I can look right now.  

I'm grateful for the overwhelming abundance that has found a way through our door.  Whether its a card, or the gift of scripture cards, or food, or a short visit- it all adds up beyond measure.  It's hard to make "plans" for anything.  And I have my days of not being fully dressed and made presentable, as my house sits in varying degrees of disorderliness.  But we open our doors when we're able and pray others can avert their eyes from the mess,  and just see me.  I'm still in this shell of myself peering out through those swollen and hollow looking eyes.  But, I'm still here.  And I'm eternally grateful for all who so tirelessly work to meet me in this space- often so new for both of us.




Love and blessings to you all!














26 comments:

  1. Oh, Vicky, this is hard-hard stuff and still you handle it with such love and grace. Jesus shines through your words. My prayers continue...

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  2. Thanks for telling us how you are. For being real. You are spreading light, and wisdom - helping us understand -even when you feel horribly. God is using you, he speaks through you. I wish it were not this way, for you. Truly.

    I hope that you feel the peace and hope that passes all understanding.

    Praying! Hugs from here.

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  3. I think I speak for anyone who visits you here that you probably have no real idea of just how much of an impact you have on all of us - Your fingerprints won't ever be wiped away - the beacon of light and grace and courage and strength that is you at every single turn in your journey.

    Sending love to you and your family - xo

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  4. You've been on my mind lately and in my prayers.

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  5. I am shedding tears for you, and some of them are in awe of you. You are definitely an unforgettable someone in this world. sending you love Vicky......the grace is already yours.

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  6. God be with you, dear lady. You are so gracious, courageous, patient and loving throughout what we cannot even imagine. You're truly an inspiration and I pray that Jesus brings you comfort and peace. You will be remembered by so many and have impacted the lives of more than you could possibly know. As always, you and your family are in my prayers.

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  7. Oh Vicki, I think of you often. And those two wonderful boys of yours, often. I wish there was something that I could do, or that anyone could do, to make this all better. You are full of grace while battling such a tough disease. Thank you for sharing your journey with us - you are truly an inspiration. Sending my love and prayers to you and your whole family.

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  8. Reading this brings me to tears; my heart is heavy as I read this Vicky.
    Your family and friends bring you comfort....and you bring me comfort as I know that each and every day you go through, you go through with such grace.
    I love you, my friend.
    You know that.
    I am here for you.
    You know that.
    Always,
    Jackie

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  9. How deeply you are loved and prayed for.

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  10. Thank you for taking the time and energy to let us know how you are doing. Sad to read that things are so very very rough. Think of you often and sending hugs.

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  11. Oh my dear soul sis,
    I am sending you so much love as tears fill my eyes and run down my cheeks.
    You have constantly been on my mind and heart lately and in my prayers as I
    thanked God that you were here for another Mother's Day. I am so, so sad that
    you are having such a hard time and I am so grateful for your transparency about sharing how tough it is right now. I wish it wasn't so, dear Vicky, I wish it wasn't so. What I know for sure is that you are not alone. God is there with you in this hard and very hard time. What I know for sure is that you matter, more than you can ever know. What I know for sure is that knowing you has blessed my life in so, so many ways. Remember that old truck, honey, the one headed for the lake? I promised I would always be on it with you, no matter what. I'm still on there with you.

    Love you to the moon and back, dear one.
    Your soul sis
    Linda

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  12. Love you Vicky...I'm praying for you and your family.

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  13. Oh my dear Vicky,
    You have been on my mind and in my heart ever since I read your post yesterday.
    I reread your precious words this morning and more tears flowed. Yes, this is "A hard place to be," and you are so brave to put words to what is really going on. Now, please know, that wherever you are, and what ever you are going through, that you have an ARMY of people praying for you. Yes, you are here, thank God you are still here. And we see you and love you and hold you close as you share where things are now. I love you more than words can express.
    To the moon and back, dear one. To the moon and back!
    Linda

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  14. Every time I read your words (your heart) the same thing happens. Holy Goosebumps cover me. You draw me closer to Our Father. I've never met you, but I love you dearly. You have so many gifts--and you're using them. Even now feeling yucky.

    You lift us higher.

    Thank you.

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  15. I'm praying for comfort for you and the peace that passes understanding.
    You are an inspiration to us all. A true example of Christian grace.
    God bless you and your wonderful dear family in this time!

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  16. Oh my dear, sweet, precious friend. My heart goes out to you. My love is sent to you along with my thoughts and my prayers. Prayers for you, your family and Dr. P. May God hold all of you a little closer and fill you with His peace. xxoo

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  17. The line that brought tears to my eyes was "I love them so much." I know they love you just as much.

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  18. I have read each post so far...I did so because every single one is someone who truly " See's you'! How can I add anything more then what has been written above that I agree with 100 percent!!! I can only add my love and prayers. You are Grace under fire and you touch us all deaply! Love you beautiful you! Beyond measure!

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  19. Love and Blessings to you my friend. Your days sound rough. I cannot even begin to imagine. I am grateful you can still see goodness. I love that your have your 3 men by your side. And I love it is spring and you can see colors in your space. May God give you light, hope and peace. So much love to you Vicky. Yes, there is still purpose in your every day, I hope you can lean into that. Purpose, very much so! X

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  20. thank you for sharing. even though it is hard to read your words, i love hearing your heart, your honest struggles. you have never been anything but authentic in this space, and knowing what's going on helps those of us who love you—and who doesn't?—know how to pray. your life is an example of submission, and He is amplifying it. love you dearly.

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  21. I haven’t commented for awhile but I have continued to follow your blog and pray for you often. You’re an amazing, strong, determined woman who has touched and inspired so many others. And I believe you’ve touched many lives in ways you’ll never know this side of heaven—like mine. Like many others I’ve never met you in person, but feel I know you and if we were to meet we could talk like we’ve known each other for years. :) The way you choose to find the good in every day, even very, very hard days, just amazes me, and encourages me to do the same. While this post was a hard one to read I admire your strong spirit and determination to keep living your moments full. May you and your family feel the presence of God near you, giving you peace and comfort only He can. Hugs and prayers to you, dear Vicky.

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  22. Sorry ....I send love to you ....may white light cover you ....

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  23. Precious Vicky, I am praying for God to hold you gently in His loving arms. You are His beautiful child. Rest in Him.
    Lovingly,
    Carolynn
    Oregon Outback

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  24. I pray that our dear Lord will make your journey easier. You are always in my prayers. I pray for your darling boys as well as your husband. You are never alone in this. God is always with you. Love and blessings

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  25. Grace Vicki - you are grace come alive. You have no idea how loved you are by those who will never meet you from lands far far away but you are so loved and admired and prayed for - both you and your family (and those medical people who care and treat you and others like you. May God bless each and every one of you. Shine on you magnificent woman of God...shine on xxxx

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I welcome what you have to say. Thanks for taking the time to grace me with your thoughts and words!

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