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Posted 2019-09-20T02:03:00Z

Not What I Had Hoped

I had a new MRI on Tuesday.  It didn’t turn out as I had hoped.  The doctor walked into the room and asked me right away how I was feeling, and so I assumed something wasn’t right, because every time she comes in, she says, “Scan looks good!”.  So, when she didn’t say THAT, I knew something wasn’t right.  So, I told her my symptoms which were:  I have been off balance and pre-occupied, it is hard for me to stay on task.  And then she said, “It is growing and it has crossed over to the other side.”  That means I cannot have surgery on it.  I am going to start a new treatment tomorrow (Friday) called Avastin.  It is supposed to stop the blood flow to the tumor, which is how the tumor grows.  You may have seen it advertised on tv.  I will be getting it through my port every 2 weeks for 6 months. 

I had a feeling something was “off”.  My balance hasn’t been the same the last month.  I kept thinking, “Is that me, or is that just in my head?”.  Evidently it was IN MY HEAD. 

I have decided I am not going to drive anymore.  I feel kind of relieved about that, because I was not feeling very safe in my car lately.  Things would come up on me from the side, and I would be like, “Where did that person come from?  How come I didn’t see them coming?”.   I told the kids to sell my car and we would split the money, but they said, “Let’s just keep it here and Susan can use it when she comes to town”.  (Susan here (who is transcribing this) – Thank you.  I didn’t know that, makes me cry.)

I gave myself a new goal a couple of months ago to move out on my own next summer.  But now it looks like that won’t be happening.  That makes me feel sad. 

I have been on several trips the last few months – 7 trips in 8 months!  February – Florida (with friends and we saw dolphins).  March – Hawaii (with my kids and grandkids and we snorkeled with turtles).  April – Washington DC (with my sisters and we saw cherry blossoms).  June – Florida again (with my sisters to celebrate our 3 birthdays).  July – Kansas City (with friends and family to see my brother-in-law David’s play).  August – Florida AGAIN (with friends, saw nice sunsets and swam with dolphins).  September- Arizona (with my son Nathan, Lyndsey, Ryker and Keegan – walked on the glass walkway over the Grand Canyon).  I applied for a passport now because my sisters and I want to do something special for Mary Day this year.  We haven’t decided what exactly.  But I have a passport now so I can leave the country if I want to.  And not come back if I don’t want to!! 

I am walking in the Alzheimer’s Walk this weekend.  Then I am going to have lunch with an old friend, Julie, and bring along 2 other very long time friends Karen and Dottie.  In a couple of weeks I am going to hang out with my friend Susie Evers at her cabin.  I am going to go to Kansas City again in November to watch my friend Corey and his band. 

I am SAD, but I am not SCARED.  I am just sad I am going to miss out on so much.

I think it is going to go really fast now, because the tumor has grown so much since my last scan.  I didn’t think I would be the first one to go.  I am going to try and be brave. 

I can't:

- Worry about it, that won't change anything.

- Believe I have this awful disease.

- Believe I won't see my grandbabies grow up.  Makes me soooo sad.

I can: 

- Be brave.

- Cry if I want to.

- Give up my car if I want to.

- Try and relax and not think about my kids and grandbabies.

- I can and WILL miss them so much!!!!! 

 

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Comments (28)

  • Steph CP
    Steph CP

    All we have is The Moment. You do such a BEAUTIFUL job at living fully in the now. My love and prayers surround you.

    5 months ago · Reply
  • Brenda M Lee Dolinski
    Brenda M Lee Dolinski

    You are so brave Nette. I can never tell you enough times how much you mean to me and we love you so much. We are all sad but blessed you are still here. Love you cousin!!!

    5 months ago · Reply
  • Ronna Hammer
    Ronna Hammer

    Hate to hear news like that. You are the strongest lady we know. You can kick some mass!! We love you very much.

    5 months ago · Reply
  • Vicki Sulak
    Vicki Sulak

    Nettie, though we have not met, I feel I know so much about you through Susan and your updates. Please know you are loved and that so many prayers are being said for you. You have such a beautiful way of enjoying life, which is so encouraging to others. Keep staying in the moment, Nettie...much love. 💕

    5 months ago · Reply
  • Brenda Merchant
    Brenda Merchant

    Thinking of you Nettie. You are so strong and brave.

    5 months ago · Reply
  • Joanne Hohlfeld
    Joanne Hohlfeld

    Nettie, you are the bravest woman I know. You live life to the fullest! Even though our contact has been minimal since we were kids (like 10 years) my prayers have been with you everyday. U are my inspiration!!! Love you girl with continued prayers!!

    5 months ago · Reply
  • Kelly Nath
    Kelly Nath

    You are the bravest of all of us! I’m glad you are not scared....💕

    5 months ago · Reply
  • Sherry harrold
    Sherry harrold

    You are surrounded by love, sweet sissy. I am so sad, too. I am here for you every step of the way.

    5 months ago · Reply
  • Cathi Sanchez
    Cathi Sanchez

    Not something I wanted to read, but it's not what you wanted to post, either. You seem at peace, though. My heart goes out to you and your children and sisters. I hope it's comforting having shared so many happy memories with them. They will cherish those memories forever. Sending you a hug.❤

    5 months ago · Reply
  • Nancy Thompson
    Nancy Thompson

    We are so sorry for the hard news, Annette. We are with you in this and we love you very much. We are looking forward to having you over next week with Sherry. We are praying for you lots. Aunt Nancy and Uncle Bill

    5 months ago · Reply
  • Peggy Young
    Peggy Young

    I just want to cuss! I know many people are sad to hear this news. We are here to continue to live in the moment with you.... Making beautiful memories with a courageous person.

    5 months ago · Reply
  • Joan Phillips
    Joan Phillips

    Thinking of you!! You are a beautiful, inspiring person!

    5 months ago · Reply
  • Terri Ingraldi
    Terri Ingraldi

    So sorry to hear this news and will be praying for you🙏 You have been so brave❤️

    5 months ago · Reply
  • Vicki Conrad
    Vicki Conrad

    Live for today!!! Do what you want for today!!! You have been brave and I love you for that!! Keep planning for your future even if it is one day at a time!!!! Get them goals done!!! Love you to the moon and back and I am so sorry that the news was not better for you. I think about you on a daily basis and pray for you hourly!!! Love you!!!

    5 months ago · Reply
  • Steve Nath
    Steve Nath

    Annette, we love you and are here for you, every step of the way. You are one of the bravest people I know.

    5 months ago · Reply
    • Sherry harrold
      Sherry harrold

      Steve, we need to get karaoke night on the calendar. Definitely.

      5 months ago · Reply
  • Lauri Dyer
    Lauri Dyer

    Oh Nettie...this new saddens me greatly! My hopes n prayers will be with you & your family now and always! I love that you're living out your life with all it has to offer you and being so damn BRAVE! I CAN admire you for being so BRAVE! I CAN'T understand why this has to happen to such a kind, warm hearted woman like you?! With much love Nettie...Kick some mass!!!

    5 months ago · Reply
  • Teresa Beck
    Teresa Beck

    Annette we are all so sad with you and wish to God that you can be here for the big moments in your kids and grandkids lives!! We love you and support you in this next journey! I hope the meds work for you! ❤️❤️❤️

    5 months ago · Reply
  • Susan cupps
    Susan cupps

    When we get to the cabin Nettie, I want you to stand on the front porch and shout, scream, cry, CURSE or do whatever you feel like and let it echo throughout the canyon walls around us so you can let out some feelings!! And if you want me to join you I Will! I'm a good cussed! You are amazing and so loved!

    5 months ago · Reply
  • Emily Wynn
    Emily Wynn

    Annette, you are just about the sweetest person I know! Sending you much LOVE.

    5 months ago · Reply
  • Kirsten Ghatasheh
    Kirsten Ghatasheh

    I can't imagine someone handling this illness with as much grace and livliness as you and your crew have. Big hug from Saint Joseph, Missouri.

    5 months ago · Reply
  • Marsha Urban
    Marsha Urban

    Annette, you continue to inspire others through your strength, love, and life. You are providing a rich legacy for your grandchildren. Their grandma is a fighter!

    5 months ago · Reply
  • Amy Hansen
    Amy Hansen

    Annette, you are amazing! You are such an inspiration for all of us. I enjoyed reading about all the fun adventures you have been on with your wonderful family and friends. All my love, prayers and hugs.

    5 months ago · Reply
  • Linda Corell
    Linda Corell

    Thank you for your candid, honest, raw feelings Annette. You are loved by so many and are teaching all of us how to live life in the moment. Sending you TONS of love and positive energy beautiful girl.

    5 months ago · Reply
  • Kathy Anderson
    Kathy Anderson

    Annette -- You remind me so much of your mom with your unstoppable spirit and unending zest for life no matter what the circumstances are! I have always been inspired by your "I CAN/I CAN'T" lists. You tap into the reality of the path you are walking with honesty and grit and heart! Someday your kids and grandbabies will be able to go back and reread everything you have shared and they will see the strength you had all through the journey -- and they will see the amazing woman you are and THAT is a legacy you can be proud of! It is the legacy that will fill their hearts with the strength they will need when the time comes. You have NEVER once sugar-coated the reality of this disease but have always faced it head-on. That takes enormous fortitude and bravery! Because of the way YOU have dealt with everything, those around you have been lifted up and encouraged. Even when the news is not good, you have found a way to state the facts as they are -- and then you list your I CAN things. WOW!!! Your ability to do that makes me stand in awe! As always I am continuing to pray for you. You are one incredible lady!!

    4 months ago · Reply
  • Marijo Schneiderwind
    Marijo Schneiderwind

    I know this is not what you wanted to hear, my heart is heavy with this news. You have been amazing thru this nightmare , not sure I could have handled this as well as you have. We all should live each day like it’s our last nobody is promised tomorrow. Keep being you. Love all the beauty you have brought to this world. Everywhere I go I keep searching for one of your beautiful hand painted rocks. One day I will find one. Love ya girl

    4 months ago · Reply
  • Lori chancellor
    Lori chancellor

    Nettie you are the bravest person I know. Just keep living everyday like you have been enjoy every minute . We all love you stay strong

    4 months ago · Reply
  • Jody Gubalke
    Jody Gubalke

    You are such an inspiration to all of us. You make me strive everyday to be a better person, mom, grandma & friend. I look forward to seeing you live your life for all it’s worth. Thank you for sharing so much of yourself & your family with us all. I CAN’T stand hearing this news. I CAN be there for you. I will miss you so much Annette. Prayers to you every day, as usual and sending a special big fat hug to you through this blog. 💕

    4 months ago · Reply