Smiling. Not Crying.

February 25, 2020

After a 14-hour day yesterday, we were grateful to finally arrive back home home at 8 p.m.  Here’s the view in my mirror as were leaving the Outer Banks.

 

I’ll write more in detail about the day later but I know that many of you have been waiting and praying with us so I didn’t want you to have to wait on news.  And by the way, THANK YOU for all the comments and words of encouragement over the past few days. You’ll never know how much they meant.

Nutshell Version

The not-so-great news:
The Duke pulmonologist completely agreed with the diagnosis of obliterative bronchiolitis.  He said there’s nothing else it could be. My overall lung function is currently at 57%.

The not-so-bad news:
He said the PFT’s (pulmonary function tests) done last Friday were actually slightly improved over than my last two PFT’s.   Improved is always a happy word to hear, slight or not.

Also, he doesn’t think the disease is as far advanced as my former pulmomoligist had told me.  Yes, it’s still a serious disease and yes, it’s a disease that doesn’t usually have a good outcome.  But he said that my testing over the past 8 years has not dramatically worsened. It has definitely gone down but it’s gone down fairly gradually so he said there’s no reason to think it won’t continue to follow that pattern, which he was hopeful about.

He has several new medications for me to try, which my former pulmonologist had never mentioned, so that’s another ray of hope.

Steve and I enjoyed getting to spend the day together; I was grateful to have him at my side for this important appointment and for the final confirmation of the disease. He is truly my steadfast support.  By the way, we got a chance to meet a very special person while we were in Durham who I’ll tell you about later. (Hint: it was not Dr. Driscoll.) 

Bottom line?  I left Duke smiling, not crying, holding tightly and gratefully to every snippet of good news I was given.

Much more later . . .  thanks so much for the prayers and support!

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46 comments so far.

46 responses to “Smiling. Not Crying.”

  1. Jenna says:

    I’m glad you left smiling, Becky. One day at a time.

    • Becky says:

      Jenna,

      That’s good advice. It’s a little overwhelming looking too far into the future but I know I can get through today and tomorrow!

  2. Ellen W says:

    Did you meet Trisha?!

    I’m glad yours news was mostly positive-ish. Given that you weren’t EXPECTING to be told that there is absolutely nothing wrong with you, a decent second place is being told that what you do have is probably going to continue to meander rather than sprint!

  3. lesley says:

    Wonderful news!!!!

  4. Michele says:

    I’m so glad this pulmonologist had some good news for you and gave you hope. Prayers continue

  5. dmantik says:

    Thankful with you for the good parts of the news. Hope is a wonderful thing.

    Love to you both and so proud of you guys for your steadfastness and courage.

    Love, Deb

  6. Linda in Pittsburgh says:

    Becky,
    Thanks for taking the time to update after your long journey. So glad that Steve was able to be with you. Happy that you were smiling and encouraged. Not as bad as previously diagnosed and new medications to try certainly is encouraging. And, with continued research, who knows what the Great Physician has planned to be discovered. Continuing to keep you in my prayers and sending love, hugs and good wishes your way.
    Linda in Pittsburgh

  7. Fred & Lucy says:

    Dear Becky, I know you are exhausted from your long weekend and the stress involved, so thank you for taking the time to keep us updated. We are thankful for the good news you received and hope that your new medications will be beneficial. You photo of the rear-view mirror was an award winner. We appreciate you and your family.

    • Becky says:

      Fred and Lucy,

      Thanks for the comment on that photo. As soon as I saw that sunrise in the side mirror I thought, “That’s a great photo for the blog!”

  8. SueEllen says:

    I was so happy to see the notice of your post come up in my email and even happier to see the word smiling. I’m so happy you received encouraging news along with your diagnosis. I pray that you are able to find the perfect medication for you! Thank you for the beautiful sunrise picture in your review mirror – what a cool perspective. I look forward to finding out who you met at Duke and thank you for letting us know so soon; surely you’re tired from such a long day Monday.

    • Becky says:

      Sue Ellen,

      Thanks. I loved that photo, too.

      In my next post, I will write about the person we met.

      Thank you for your encouraging comment.

  9. Mrs. Pam says:

    smiling with you

  10. Liz says:

    ???????

  11. Wendy says:

    Wow! Much needed good answers for you. Slightly improved is good, new medications to try is good. God is answering all the prayers for you. Thank you for the update

  12. teresa marilyn hewitt says:

    Dear Becky, I have been awaiting your news anxiously and was so glad to hear there had been some good and there is reason for optimism .Hopefully one or more of the new medications will help your poor old lungs get some Ooomph back into them! PS I thought your ‘selfie’ of the previous post was lovely, you looked so pretty. Much love and warm best wishes, Teresa (from the Cotswolds, England). xxx

    • Becky says:

      Teresa,

      It’s always fun to see the words,” the Cotswolds, England,” pop up in my comments. It’s on my bucket list to visit your wonderful part of the world.

      And thanks for the sweet comment about my selfie. 🙂

  13. DeLynn says:

    Thanks for taking the time to update your blog-friends, Becky. I know there were many of us praying for you. Many of us have had those significant medical appointments (our son had a brain tumor at age 11) and know the emotion involved. I read Psalm 100 yesterday and thought of these verses as I read your post. God would still be good if the news today wasn’t as positive as we all prayed for….but it is exciting to know there is some hope. Blessings on you all!

    “Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.”
    ‭‭Psalms‬ ‭100:4-5‬ ‭ESV‬‬

    • Becky says:

      DeLynn,

      An appointment for an 11-year old son with a brain tumor is most definitely high up on the stress meter. As you said, many of us have sat in a doctor’s office, waiting for reports and diagnoses, holding our breath as the doctor opens his mouth to speak.

      Thankful for God’s “steadfast love and faithfulness” during those times, as that chapter expresses so well. Thank you for sharing that.

  14. Jenna hoff says:

    Becky,

    I am so glad you were given a finalized diagnosis as well as potential new treatments to help. That is also wonderful that it may not be in quite as severe a state as prior thought. At the same time, it is still heavy news and I am so sorry you are living with this disease. I am glad that you are smiling.

    You are such a strong woman who has inspired me so much.

    • Becky says:

      Jenna,

      I was touched by your comment, “At the same time, it is still heavy news.” In the midst of the slight improvements and the new meds to try, the knowledge never leaves me that I live under the shadow of a serious lung disease. Thank you for understanding the weight of it.

  15. Ann O. says:

    Thanks for the update! So grateful for the not bad news, and some pretty ok news! Slightly improved is wonderful! Sure beats the alternative. Prayers that this plan, with your solid care team, gives you peace, as you face the future with a good dose of hope!

    • Becky says:

      Ann,

      You mentioned my solid care team, and I have got to give a big Amen to that! So thankful to be at Duke and receive that caliber of care. Despite the long days on the road, it is well worth it to my peace of mind.

  16. Cindy Latoures says:

    So happy you got good news!

  17. Ann Martin says:

    So thankful. We will take all good news no matter how small you feel it is. Prayers for more improvement. Hopefully you both can get some rest this week. Love and hugs. Blessings. ????????

  18. krista121799 says:

    Thank you for updating for us, I appreciate that you thought to do that.
    I’m glad that there are smiles and not tears in the outcome. It sounds like you were in the absolute best hands and have a great outlook. I’m also smiling!
    <3

    • Becky says:

      Krista,

      I wanted to be sure to update ASAP because I knew so many of my Smithellaneous friends were waiting along with me. Thankful for the smiles!

  19. Katrina says:

    Sending a hug ?

  20. LeeAnne says:

    That’s so good to hear….smiling, not crying. And hopefulness is always awesome. Answered prayers indeed!

  21. Phyllis says:

    Slightly improved is a good thing. And knowing for sure what the diagnosis is and that there might be other medications you can try. Continued prayers.

  22. Reagan Whitmire says:

    So happy you got better news than expected!

  23. Ruth Rehberg says:

    So glad for good news for you!! Be encouraged in the Lord– Ruth

    Zeph. 3:17 “the Lord thy God in the midst of thee is mighty; he will save, he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing.”

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