Friday, April 6, 2018

hope is medicine





I have sat down so often, writing a little bit of an update, but it never feels quite finished so I wait.  And begin again another day. But no two days are alike anymore.  I'm in a continuous cycle of dealing with new physical challenges each day it seems, and I just don't ever seem to go back to "normal."  Its a "new normal" everyday.  But here goes just a little of what it's been like. 

 I last saw Dr. Panwalkar on a Tuesday in late March.  He teased me as he fired up the computer saying "3 whole weeks have gone by and I haven't heard you ring my phone once!  How can that be?"  

It sets a pleasant tone instantly and I banter a response right back.  Our whole visit is a series of questions and answers and I try to affirm each time that really I'm doing ok.  Until he asks about shortness of breath.  And between Rick and I we paint the picture, without realizing the ball we've set in motion. 

I just can't always get very far walking, without running out of breath.  And I certainly can't clean, or dress, or do normal activities for any length of time without also struggling for air.  

Dr. Panwalkar assures me we will get to the bottom of it with some help from the Pulmonary department.  While a simple xray doesn't show any big differences from the last one, Dr. P still wants me to have testing done.  As he walks me out to infusion that day, I happen to remember and whisper to him, "I just passed my seven year anniversary since diagnosis on the 16th, thanks to you."  He smiles big and wraps an arm around me as he ushers me into a seat carefully.  He whispers right back... " and we'll just keep hoping for more..."  His voice trails off as he turns to leave.  I sit, flooded with warmth and hope.  

After chemo, I get a wheelchair ride over to the Pulmonary Clinic and proceed to get hooked up to a device that will track my airflow as I simply walk up and down the halls.  I take off walking and seem to do just fine, but after several trips of walking in a circular fashion, I'm short on breath and cue the technician its time I sit down.  She grabs a nasal canula and oxygen streams into my lungs through my nose.  I sit breathing deep as she announces that my oxygen saturation has suddenly plunged to the mid-80's.  My eyes search her face for an answer to what this means. Oh, you failed the test, she says.  But that qualifies you for oxygen therapy.  

Just.  Like. That.  And I'm home, on oxygen therapy.  Its a long appointment with a respiratory therapist at our house.  He first goes over the concentrator that will sit in the living room area with ample hose attached to a nasal cannula for me to wear.  Then he goes over the unit I can wear across my body.  Except, I instantly discover its quite heavy for me and cumbersome to wear. It exacerbates the pain on my left side, no matter how I situate the unit.   It'll take some maneuvering on my part to be able to wear it out.  

Over the course of the last couple of weeks,  having oxygen therapy has taken some time getting used to.  I don't need it around the the clock.  I don't need it if I'm just up and walking to and from one area  of the house to the next.  But as the day goes on and I need to perform some activity, I require more use of the O2.  Its quite drying to the lining of my nose, despite the constant post-nasal drip I have as a side effect of my chemo. And I've had some headaches that may go with it.  But otherwise its a pleasant feeling not to have to fight for air at times and the panic that can go with it when you don't feel like you'll recover your ability to breathe.  

So just when I felt like I had the breathing part figured out, last week I couldn't shake a sense of light headedness.  I had to go into Roger Maris for a booster shot and told them how I was feeling.  The nurse could tell something wasn't right with my color or my blood pressure.  Soon Lori was sent back to see me, and she went to run everything past Dr. P.  They felt I was dehydrated and needed some iv fluids at the infusion center.  I was lucky, a cancellation had just occurred and I got to go right in.  After a good 1 liter bag was infused a couple of hours later, I was cleared to go home as long as I took it easy and rested.  We just had to laugh that it seems lately its always something, but what will happen next?  

It took me awhile to bounce all the way back.  My counts may have been pretty low and had to restore themselves with help from the booster shots.    In the meantime, I've also been dealing with some episodes of a vasovagal response.  I don't actually pass out, I manage to stay conscious, but my stomach heaves for several intense minutes.  I have intense nausea and it can end in vomiting repeatedly for awhile.  I sweat profusely and shake and then after a good 10 minutes or so, it passes quickly and I recover.  But when and where these episodes may occur, is unpredictable, and hard to manage.  Add all of these things together and you can see why no two days are the same anymore.  

So each day, I try to just succeed at a basic level.  If I can dress, eat, get up and be with my family, etc., that is the aim of a good day for me.  But sometimes, even those basic things can just be a tall order.  Its the way things seem to go right now.  And that is where all the wonderful things you send me, help more than I can say.  I so often have to reach outside of myself, clinging to the bits and pieces of hope that are thrown my way.  I love the Anne Lamott quote... "Because hope is medicine..."  Its definitely something I've come to learn from my one word for 2018. 
















We finally got to see the airing of our story in Dream. State.  Wow!  They did such a great job of piecing together a wonderful story about our family.  We have continually felt so blessed and honored to have been asked to be a part of this show.  I tired embedded the show below and hope it works if you'd like to view it.  Our part starts about 3 minutes in and runs for a few minutes!  I'm so proud of the boys and how well they shared from their hearts about what they live on a daily basis.  It was very fitting the show aired at the same time I passed my 7 year cancer survivorship milestone!  







Thank you to everyone who has sent me notes inquiring about how I am doing.  The outpouring of care and concern continues to bless us and humble us.  Meals still show up at our door and nourish us both physically and emotionally.  Plants, flowers, cards, letters- they bolster us so and we can't say enough thank you's for all that is done for us!  


















25 comments:

  1. I wish I could do something magical for you. Your strength, and your attitude are an inspiration for me. On days when I fight the headache, I think of you. And I know, that I can keep going, because you do. You're my hero, Miss Vicky. sending you so much love.

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    1. Oh Hilary- just to see you show up here warms my heart. Plus- you inspire me so much! You equally carry such a hard burden with your health and yet you repeatedly chose to go on and live so fully. I'm truly honored to call you my friend! Love to you!!

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  2. The only problem with the video, was seeing it through my tears.
    What a beautiful family you have.

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    1. Thank you for your sweetest of words- we feel so blessed to have been given this opportunity- thank you for watching!

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  3. What a beautiful family - what fine young men you have raised - you are the Light for so many, Vicky - and will always be. Sending love, hope and prayer - xo

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    1. Thank you for always saying such kind words- for faithfully showing up and lifting my spirits so- lucky to call you my friend!

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  4. Oh my goodness, thanks for sharing the link; you all were amazing. Great job! Vicky, you've been on my heart, but I knew you'd post when you were ready. I'm hopeful that you will have a beautiful Spring, and that you'll feel daily strength. Love and prayers xxx

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    1. Thank you for taking the time to both watch and leave such kind words for us! I'm so thankful for your ongoing care and concern and your prayers truly have helped see me through all of this. Blessings and love to you, Susan.

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  5. Vicki,
    Your post keep me inspired as I figure out new normal. I will pass my 1 year mark the end of this month. You blog has inspired me to live with hope and gratitude (my word for the year). Thank you for sharing your journal and you are a part of my prayers.

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    1. Lynne, how wonderful to see you show up here! I think of you often and admire your strength and courage. Passing the first year of treatment is truly a milestone and I wish for much more time to come for you! Gratitude has been the key component of how I've gotten through all of these years and I continue to learn about it all the time. Thank you for your kind words and prayers and please know they are returned for you as well!

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  6. My dear soul sis,
    As always, your words touched my mind and heart and tears flowed along with a deep, deep sense of awe for who you are. Oh how God is using you, precious Vicky, to remind us all about gratitude! Reading about you being on oxygen, and struggling to walk a long way without it, well, I just couldn't stop crying. Yet more than sadness, I am just SO PROUD OF YOU!! Your grit, your moxie, your courage just shine through, dear one. And a SEVEN YEAR ANNIVERSARY of still being here!! Hurrah! Praise God!

    I LOVED seeing and hearing the video. You...sharing from your deepest heart. And I lost it when I heard Rick's voice and listened to Nolan and Colton. This journey is giving your boys a depth of character as they see how courageous you are. And the hockey part, I kept holding my breath and cheering out loud.

    You would love this, with all of my crying, laughing, and cheering out loud...Bert came from another room, took one look at me and said, "You must have heard from Vicky." "Yes, I said.
    He came over and gave me a hug and sort of whispered, "I'm so glad you have a friend that you love this much." more tears...and I replied "I'm so glad too!"

    To the moon and back, dear one. Always sending you love, HOPE, hugs and prayers to the moon and back!
    Linda

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    1. Dearest soul sis. your words touch me through and through. I'm so lucky to call you friend- amongst so many other roles you play in my life- my gratitude for you knows no bounds. And yes, the part about Bert and what he said brought tears to my eyes! I always feel as though I could gush on and on and wouldn't scratch the surface of what you mean to me, and so many of us. Love and blessings to you sweet one!

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  7. I continue to pray for you, Vicky. I remember when Robin of "All Things Heart and Home" posted a prayer request for you nearly seven years ago. God has brought you to my mind so many, many times. I have had the privilege of praying for you and your precious family. You have blessed us all with your strong faith, sweet spirit and perserverance. May God bless you richly in the coming days, dearest Vicky.
    Fondly,
    Carolynn Mintz
    Oregon

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    1. Carolynn,
      Thank you so much for your faithful prayers! I truly believe those special prayers have seen me through all of this and I'm deeply indebted to you. I pray you are also richly blessed in all the days ahead! Thank you so much for your sweet words.

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  8. Thanks for the update. I really enjoyed the video. Francis C. Moore

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    1. Thank you for your sweet words and faithful support always, Francis. Blessings to you!

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  9. Hi Vicky, I was so happy to see your post. Congratulations on your 7 year anniversary. I really enjoyed Dream. State. It was great seeing your family. You and your husband have raised such wonderful, thoughtful and caring sons. Thank you for sharing your story and journey with all of us. You are such an inspiration and even though you don't know it, you helped me when I went through some breast issues
    and surgery of my own. Thank you, Kristi-Ohio

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    1. Kristi, thank you so much for taking the time to leave such kinds words! I'm so sorry you've gone through breast issues as well, but you touch me so in sharing with me and if some small things I've said or done helps you than I'm deeply humbled. I pray your issues are resolved and you are well. I pray my life can be used to benefit others- and you make me feel as though this is all worth it! Thank you so much, Kristi! Love and blessings to you!

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  10. Vicky, I can remember vividly 7 years ago, when you announced your diagnosis. My Dad had just passed away 2 week earlier and I just couldn't believe what I was reading. My heart plummeted. And, 7 years later, I am amazed by your strength and perserverance. Your sons have grown into wonderful young men. You are truly blessed! My thoughts, prayers and love are with you always, dear friend. xxoo

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    1. Eileen, seeing your name here just makes my heart soar. You've been such a wonderfully faithful, kind, and supportive friend to me and I treasure you so! Thank you for your ever gracious words- your kindness knows no bounds I'm eternally grateful for the gift of your sweet presence in so many aspects of my life. Love and blessings to you!

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  11. Once again, your words went deep into my heart. There's so much LOVE and JOY and HOPE in this post. And the video-----holy moly.....

    Feels like I've always known you, my friend.

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    1. Thank you for your sweet words, Julie. I'm touched by everyone that has taken the time to watch the tv show- its so central to our lives here and we're so honored they chose to tell our story in the midst of the larger story. I have goosebumps from your words of feeling as though you've always known me- ditto I'd say! The time that our Robin flew here and we got to meet in person- our conversation went deep right away and it felt exactly as you said. I have no doubt it would feel the same if you and I were in each other's presence! Love and blessings to you!

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  12. I started following your story not long after diagnosis and have kept up ever since. I’m amazed at your strength, but even more at your thoughtfulness toward others. You can be in the midst of having a setback of some sort and your question always is, “How can I pray for you?” The world needs more just like you! I watched all of Dream. State. and loved every minute of it! Living outside of Nashville, we’re not consumed with hockey at young ages like your community, but I found myself watching and praying the Spuds made it back to state! Anyway, just wanted you to know that you touch so many, and I pray every time I check that all is going status quo for you!

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    1. Hi Courtney, its such a pleasure to read your sweet words. I love the Nashville area and think its really neat that you live there. Thank you so much for following our journey and cheering us on- I am so touched you took the time to introduce yourself and say such kind things. Love and blessings to you!

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  13. Just a note to let you know you entered my thoughts in the middle of my busy work day. Had to leave you a note to let you know you're in my thoughts and prayers.
    Lynda in Michigan.

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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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