Well, I don’t know how else to say this except just to say it.
Last Monday I was diagnosed with obliterative bronchiolitis.
This is a serious, irreversible lung disease that causes inflammation and blockage of the bronchioles, the smallest airways in the lungs. In my case at least, it’s partially driven by rheumatoid arthritis. There had been talk of a lung biopsy to confirm it but Dr. Ramsammy, the doctor who diagnosed me, said a biopsy would not change the treatment or the outcome.
The main change she is making is to move me from annual pulmonary function tests to quarterly tests. She said that if at any point she sees an appreciable drop in function, she will send me straight to Duke to be worked up as a candidate for a lung transplant.
Scary words. I know.
I think one of the hardest parts of this is diagnosis is that there is no timeline. I have been relatively stable for a couple of years but the overall trend for the past 10 years has been downhill. Right now, I’m at a moderate to severe level of disease. I could stay stable for a year or five or ten, or I could take a dive next month. No one can tell how quickly the airways are being closed off (or obliterated) so it’s just a waiting game.
On the bright side, when I told the doctor that I had ridden my bike five miles the week before she was astonished. (I’m always happy for those rare times I can astonish a doctor for a good reason.) She said it was crucial to keep exercising as much as possible because people that go into transplant in poor shape don’t do as well.
This was a doctor I hadn’t seen before and I absolutely love her; she is one the best doctors I have seen on either Sarah’s or my complex health journeys. She spent an entire hour with me, answering every question, displaying a brilliant intellect while all the while treating me with compassion and dignity.
I drove two hours to Duke where Steve had been since early morning with our youth pastor and his wife as their son underwent heart surgery. (See end of post for an update on sweet Grey.)
Feeling shell-shocked and overwhelmed from the news I had received I thought, “Wouldn’t it be cool if we ran into Dr. Driscoll today?” For new readers, Dr. Driscoll was Sarah’s bone marrow transplant doctor.
But of course Duke is such a HUGE complex, I knew the chances were slim.
Then I found out that the Grey was on the same floor as the transplant unit and I thought, “Well, maybe our chances of seeing Dr. Driscoll have just increased!”
After spending time with Grey’s parents, Steve and I went and walked down the hall to the transplant unit, looking at all the pictures on the walls of kids leaving the hospital after transplant.
I saw this photo of Dr. Driscoll and thought, “Well, at least I got to see his picture. That will have to do!”
It was interesting to match last week’s walk down the corridor . . .
with the memories of our 2003 walk. Seems like a lifetime ago.
Steve and I finally got ready to leave the hospital, both of us bone-tired and more than a little disheartened by the news we had received.
Trudging together down the long tunnel leading from the hospital to the parking deck I happened to glance down the hall at the people coming our directions and had to blink twice to make sure of what I was seeing. It was Dr. Driscoll!
It was such a happy reunion there in the middle of all the busyness; he was just as surprised and happy to see us as we were to see him. We talked for about ten minutes and as we parted ways he grinned and said what he always says, “When Sarah gets married, I want an invitation!”
I hugged him and thanked him again for helping save our daughter’s life. He lit up like the sun and as he turned to go, I hoped that our brief meeting would encourage him as he turned toward the hospital to bring healing to the waiting children.
I can’t tell you how much it meant to have our paths cross that day. As Steve said, there were probably a thousand different events throughout the day that all had to work together for us to be in that tunnel at the same time. I don’t even know WHY I wanted to see him; I guess maybe it was because he was a big part of one medical miracle in our family, a miracle that happened there at Duke. I was doubtlessly thinking of possible future Duke days and possible needed future miracles.
has been telling our family and congregation the news. I have said so many times to Steve this week, “But I don’t want to tell this person or that person. I don’t want them to be saaad.” (Imagine a pitiful wail attached to the word sad.)
But the telling had to be done and it was. There were tears shed. Hugs shared. Prayers said.
Yesterday, I shared the news with our worship team before rehearsal. You can tell by the Kleenex scattered near my shoes (which I always remove during rehearsal) how that went.
The team members were so incredibly compassionate, taking on our family’s pain as their own.
Later on in the morning service, I told the congregation and a group of them gathered around with more tears and more prayers. I’m so thankful for a church family who has loved us so well throughout all of the health challenges we have faced during our ten years with them.
I was especially grateful for one woman who, while everyone else was praying for me at the front, took the time to go back to the sound room where Sarah was running media and put her hands on Sarah’s shoulders and just stand quietly with her and pray as Sarah continued to do her job. When Sarah told us about it later in the day, I could tell how much it had meant to her.
After the service, Sarah and I decided to pose for a mom/daughter photograph called A Study in Coral. I am so grateful for this grown-up girl’s strength and compassion over this past week.
I also appreciated Nathan and Meagan even more than ever this week as we Face Timed them and they cried and prayed with us. And of course, Steve has, as always, been my rock.
(Note: hit pause at the end to keep it from playing again.)
Grey’s surgery went very well and he should come out of ICU today.
Here he is with his mom after the surgery.
Gotta love that face!
I don’t often do this, but if you would like to help this sweet family financially with medical bills and expenses related to living away from home for 2 months, here is the link. Grey Rogers
I jumped on here to check in on my favorite Smith family just to realize it’s been a very long time! Wow! I have a lot of catching up to do but I’m going to spend a little time each day to do that. So much has happened with y’all! I’m so sorry to hear about this diagnosis. I still think about y’all often and pray for all of you from time to time! <3
Lizz K,
Thanks for jumping back in here. And yes, getting all caught up will definitely take a few days/weeks/months. Thanks for your cheery comment!
Becky,
I’m so sorry for this new news. I pray that a firm diagnosis and a new plan will mean better health for you whatever path this goes. I pray that five years from now you will be feeling strong and look back at this as just a chapter in the book! I once read that in her correspondence Kate Middleton wishes that people go from strength to strength. I wish this for you! ?
Jennifer,
I loved that you quoted that “strength to strength” line. I had just added the Bible verse that refers to that to my list of verses to memorize. It definitely applies to where I am and where I am going.
And I will hope right along with you that a few years down the road, this WILL be just another chapter in the book.
I had just wiped my tears from your post when I read your Mom’s comments. Now that I have wiped my eyes twice, please know that I am holding you close in thought and prayer. I’m just so sorry that this is the outcome. However, God is in control and that is comforting to know.
I have to say that even tho it was hard to tell your church family, at least you had fabulous shoes on while you did it! (Or sitting in the corner, as the case may be!) Those shoes are just darling!
Be blessed!
Krista,
Thanks for noticing my $4 thrift store shoes. I’ve had them several years and have really loved them.
And yes, that comment from mom was definitely tear-inducing, in the best kind of way.
Thanks so much for your prayers and your concern.
Oh Becky … I don’t even know what to say. I haven’t checked in with Smithellaneous in weeks. You and your family have already been through so many medical issues, I just hate to hear of another. The song is perfect, like God’s love and peace. Please know I will pray for all of you. Your faith and words are an inspiration to all of us!
Karen,
Thanks for stopping by and taking the time to leave a comment.
You’re so right–perfect love and perfect peace and a perfect song to express it all.
Hourly prayers for you and your family. ❤️??
Fred,
Thank you so much!
Steve is looking forward to seeing you tomorrow.
I have followed along for many years, but rarely comment. I know one day again, you will only be able to explain by leading with “but God…” as you have so many times before. Praying and loving your family through this tough time.
Reagan,
Thanks for being a first-time commenter! First-timers are extra, EXTRA special around here, mainly because they make my whole day. 🙂
Thanks for your sweet words and your prayers.
I was sent this link to your blog and I’m rejoicing that the tunnel you walked through at Duke was such a bright beacon of love from our heavenly Father. Dr. Driscoll was there for your personal encouragement…so like God. I am praying and believing for the miracle in your body. And by the way…you are incredibly articulate! Love you.
Susan,
Thanks for taking the time to not just read the post but to leave a comment.
I especially appreciated your thought about that tunnel at Duke being a bright beacon of love. That is definitely a truth to hold on to.
We are so blessed you and Rick’s leadership of our District; you truly have pastor’s hearts.
Oh Becky – I’m SO very sorry to hear this news. You and your family have been thru so much – and with each step God has been so faithful and GOOD!
My prayer for you is that as you take each step, you feel Jesus sweet presence wrapping you like a warm blanket. He has a perfect plan, and he’s going before you making a way. He LOVES you …and has a good and perfect plan for you! You can count on it!
As I’ve walked thru loss and grief from losing Tim – JESUS has been so faithful, my portion, my sustainer, my ever present help! And I know he will be for you too!
God has used you so much in the past – and he will continue to use you…thru this trial. And when the days, hours and moments are hard – REMEMBER – all he’s brought you thru…..and I know he will do it again!
Gripping the hem of HIS garment on your behalf!!
Love you!
Kim Berndt ?
P.S. the goodness of God has been my anthem!????
Kim,
Words from people who have walked through great suffering always mean a great deal. You don’t just talk your words; you live them, and what a difference that makes.
I heard a speaker once say “there are people waiting for you on the other side of your pain” and that has stuck with me for years. You have taken your own pain to help bring healing and encouragement to so many others–including me. Thank you so much for sharing your story and your heart with fellow valley-walkers.
Oh, Becky. I’m so sorry y’all are going through so much… again! Lifting you all to our good, good Father, with whom nothing is impossible. Praying for strength and courage, for healing and His unfathomable peace.
Jenny,
Thank you so much for your sweet words and peaceful prayer. He IS a good, good Father and I know I am in His capable hands–wherever those hands may take me.
Well, I finally got a new computer, and what a journal up-date to read!
Hopefully, I am able to leave a message.
Prayers for courage and strength as you and your family face the unknown.
Mrs. Pam,
Sorry to break in your new computer with a sort of sad post! Happier posts are coming.
Thank you for sending prayers, courage and strength! Always enjoy hearing from you.
I don’t want to downplay your problem. I know you’ve been diagnosed with a very serious illness. However, I clicked on a “related post” from 2016 where you listed a lot of your family’s health and personal problems. Maybe this sickness has lasted longer than the others, but hopefully years from now you can just add it to 2019’s list of major challenges…think about when Sarah relapsed in 2006 (which is when I first found your site). That must have truly seemed like the end of the road, but they were able to find the right solution…and then you and Steve coming through your own cancers. Also, people can survive years and years with transplants and being able to bike 5 miles (!), I doubt you are at that point yet. Plus, you seem to have a wonderful emotional support system and that can make a big difference. I know it’s difficult and you might almost see yourself in a different light (sick, weak) when you get a “big, bad diagnosis,” but try not to see this as the end of the road. There is too much for you to live and see (not sure if Sarah is making wedding plans or that – second best haha – doctor was just assuming), but I’m guessing there will be lots of good times and reasons to celebrate ahead of you.
Kristen,
That is a great reminder to look at the present diagnosis through the lens of past struggles and victories. And itis especially important, as you said, to not allow the diagnosis to change my view of myself from “fairly healthy” into “sick.”
I appreciate you following along since 2006. That is a long time!
I had tears reading your post, then I read your mom’s comment and lost it. A mother’s Love is always there. Prayers, Wendy
Wendy,
You and me both! I read mom’s comment last night after a difficult, stressful day and I lost it, too.
Thankful for a mother’s love and thankful that you also appreciate the poignancy and beauty of Mom’s words.
Oh Becky, my prayers are with you as you walk this journey which now has a name. I’m thankful that you have a doctor you feel comfortable AND confident. I’m also thankful you are so near Duke should the need for transplant arise. And you have such a beautiful place to ride your bike for exercise on your lovely island.
What precious pictures of little Master Grey! I especially loved the one with the “smile”. I’m glad he is doing well and will continue to lift them in prayers. I’m glad you were able to connect for a few minutes with Dr. Driscoll and hope it was as uplifting as I would guess it to be.
You and Sarah both look lovely in your coral. That is such a fun, happy, beach-y color to me. And thank you for recording that song for us and posting it so we can enjoy it. Sending love, hugs and prayers your way.
Sue Ellen,
Your comment just about vibrated off the page with positivism and encouragement; thank you for that! You truly have a gift for lifting people up.
I love that you said the journey finally has a name. It’s not a good name but there is some relief in at least knowing what we are dealing with.
Dear Becky,
Think of how much you love Sarah. I love you that much. And at a time like this, I love you even more.
Think of how Sarah’s illness turned out–we will believe God will do a miracle for you.
Much, much love always,
Mom
P.S. I love to hear about how everybody is standing by you. And Steve being your rock as always.
Praise the Lord for Grey’s successful surgery!
Mom,
Well, you made at least a couple of us on the blog get teary-eyed after that lovely comment. I will treasure those words always.
Thank you for the past 57 years when I never had to wonder whether or not I was loved.
I’m grateful for you and your steady presence in my life and your example of prayer and faithfulness to your family and God.
So sorry to hear about this new diagnosis. Sounds like you have found a great doctor who is going to be a valuable person in your treatment. I will definitely keep you in my prayers. The song was beautiful! I can only imagine how much the woman being with Sarah meant to her.
So glad to hear that Gray is doing well.
Phyllis,
Yes, I am THRILLED with this new doctor. So thankful for her.
Glad you enjoyed the song; it’s stuck on “repeat” in my head.
I will put your name on my nightly prayer list, the older we get the longer the list becomes, but how great is it that our faith in God becomes longer (stronger) too!
Cindy,
Longer and stronger faith: a good thing for the years to bring us!
Thank you for including me in your prayers!
Oh Becky, I am so sorry to hear your diagnosis. It’s so hard to hear that kind of news, but even harder to have to tell others about it. Our son-in-law was diagnosed about 6 weeks ago with stage 4 lung cancer. He is 41 (birthday was Saturday) and the father of our only grandson. It was quite a shock for all of us, and took some time to get used to, but now we are all in fight mode, and this has become our new normal. I know you understand all of that. Like you, our church family has been so supportive and has continued to lift us all. I will pray for peace for all of you and for many, many years of stability for you so that you never need a lung transplant. The song you recorded was beautiful and so meaningful. Thank you for sharing!
Gayle,
Forty-one and facing lung cancer? Oh my.
You are so right when you said things like that take some time to get used to. But when the shock wears off, the fight kicks in, as you so rightly said. Please keep us updated.
So glad you enjoyed the song.
I am sorry for your diagnosis, Becky. That is heavy news. I will pray for you and all who love you. I can totally identify for your desire to see Dr. Driscoll. The people who save our children’s lives are heroes–I love when we run into two specific doctors who are heroes to us–it’s an emotional experience. May God meet all your needs and may you know His peace, that passes all understanding.
DeLynn
Thank you for understanding so well how meaningful it was to see Dr. Driscoll. You put it into perfectly into words. Those life savers truly are heroes.
Oh Becky. I’m so very very sorry. Just know you are in my prayers. I wish you didn’t have to deal with this. *hug*
Brooke,
Thank you for the comment, and the prayers, and the hug! I appreciate you.
Prayers being sent your way… just know that if and when you should need to come to Duke, you have friends here that love you and your familynand will do anythingto help you out! You havevmy contact information, so always remember that!
Tiffany,
You are SO sweet to offer such generous help. Thank you! You’ve done so much already being part of the life-saving team that cared for Sarah. You’re a hero in our book!
I can’t wrap my head or my heart around the reality of this new diagnosis. It’s too much to comprehend. I just keep thinking that God has a plan of deliverance and it will be ok. And that’s where I’m hanging my hat, so to speak.
I am so incredibly proud of you, Steve and Sarah. Your faith, courage, compassion and fortitude are a continual inspiration to me and I know, to countless others.
Love you. Leaving you in those Everlasting Arms that have carried you safe this far.
Deb
Deb,
Thanks, Deb, for being a steadfast sister in the midst of the challenges and joys of life.
Everlasting arms are where it’s at, right now!
Oh Becky, my heart aches for you and I cry with you. I care about you so much although we have never met. I hope you can feel the hugs from all of us here that read Smithellaneous. Please know that you and the family are in my prayers, more so now than even before. I believe in miracles and your seeing Dr. Driscoll is just the beginning of yours.
Lee Anne,
I am incredibly fortunate to be in this community of Smithellaneous friends. Every time I sit down to write a post or answer a comment, I am thankful all over again for each one of you.
Thank you for your compassion and prayers.
Praying for you . . . . as you have shared through the years about your lung issues, I have often thought that why such a gifted singer/songwriter would have such a health problem is question that is unanswerable ’til heaven. Praying for help, strength, and healing for you. Also, may I add a word of commendation to the lady who went to Sarah? Such kind, thoughtful gestures are rare, indeed.
Angela,
Yeah, it’s hard to deal with that reality sometimes: lung problems affecting my signing and RA in hands affecting blogging, piano playing, graphic design, and photography.
But then I think of all the things I am STILL able to do and I get out there and DO them!
And yes, that woman who went to be with Sarah is a true gem.
Oh Becky, so much for you to process in such a short time. Hugs to you. It IS hard to share somber news with others because not only do you not want to upset them, but then you have to handle their sorrow as well as your own in those moments. It’s a lot. Prayers for your entire family. Dr Driscoll was definitely a blessed reminder that God is with you and Steve, and miracles can happen again.
Also, I understand intimately the ‘not knowing’ of when the downfall will happen because we have that as well up here. My Sarah is going to fall off the cliff. She IS going to fall. The unknown variable is when. It could be tomorrow or it could be in ten years. Like you, theres been in a very slow decline over the years. It was only when they finally found the diagnosis a couple of years ago, that I learned the cliff was coming. And it was shocking, just how you are feeling now. How does one plan for such a thing???? I’m 2 years out from her diagnosis and I still don’t know how.
My heart goes out to you and your family. Not that you need any advice but I will say it anyway–Take one day at a time and focus on the positive, for time is guaranteed to no one.
Also, try to get some ducks in a row medically and legally for the future, if necessary, so when it hits the fan you don’t have to think about those things, you can just concentrate on your health.(This is the nurse speaking).
Hugs, Lesley
Lesley,
If anyone understands the complexities of medical issues, you certainly do. You have so much wisdom and insight to share–not just from caring for Sarah but also because of your medical background. So when you speak, I listen! (Unless of course, you were to tell me to permanently give up chocolate.) 🙂
And you truly understand how stressful it is to not know when the whole “fall off the cliff” thing is coming. You described it so perfectly when you wrote, “It was only after the diagnosis that I learned the cliff was coming.” That describes the emotion perfectly.
Thanks for always being generous to share advice and compassion and wisdom. Blessings to you today.
Oh Becky, I cry with you. You are not alone as you face this—from so many family members and friends to people like me online who have never met in person but who really care about you.
You have so much courage and strength that you will carry with you into the future. I am praying for you.
Jenna,
Those words coming from a person who has faced so much suffering and difficulty mean the world to me.
Thank you for always taking the time to share the sunshine of your encouragement.
My Precious Friend, No words will be fully adequate or appropriate. So I will simply say, I Love You! Typical for you that you were concerned for others hearing your news, even to the point of leaving us this lovely song of comfort. I think seeing the doctor at Duke was a reminder that Miracles are still happening for those who Believe God is Able. And He Is! Believing with you, Dear Becky. I love you!
Sheri,
Believing for that miracle along with you–either a miracle of healing or a miracle of grace in dealing with wherever the path leads.
People like you make the journey much more travel-able. (If that’s a word.) I appreciate your caring, compassionate heart.
I need to make a change in what Ann said you are not just a friend you are family. The Lord will allow your medical journey to talk to other people as your journey made with Sarah through her fight with cancer. Just rest in the Lord’s glow of His love for you during the journey.
Jim,
Well, since your purpose of contradicting Ann was to say such a nice thing, we’ll let it go this once. 🙂
We love you guys!
Becky, my dear on-line friend, with tears flowing and prayers going up, so glad that they FINALLY found out what your physical problem was. I am so sorry it has taken so long for them to find the correct problem, AND, that this wonderful doctor has taken the time to answer your questions and be kind and gracious to you. Am assuming that the medicines or whatever they were giving you for COPD didn’t do diddly. We have a prayer list that we have prayer for those that have physical needs. I have been praying for you by myself, but now we both will be praying when we have devotions, and I will be praying many other times. We also need to pray for Steve, Sarah, Nathan, and Megan. Thank you for sharing with us your needs so we can bring those needs to our Father. Glad to hear you are continuing to exercise. I have osteoarthritis in my left wrist and it is painful when I exercise, but it needs to be done – as you need to continue to exercise even on those difficult days.
Prayers going up and tears falling down. Love to you and the family.
Catherine,
Prayers going up. Tears falling down. That is such a perfect way to describe how most of us are feeling.
Hugs to you and your family.
Sharyn,
Love to read a line like “didn’t diddly” in the midst of the seriousness of the topic. Truly made me smile!
I think the COPD medicines have helped a little, not so much in any way effecting a cure but making the symptoms a little more manageable. Mainly the Spiriva inhaler I’ve been on for several years.
Thank you for also remembering Steve, Nathan, Meagan,and Sarah. So grateful for your prayers and words of encouragement.
Tears and prayers for you and family. God has showered you with many miracles and we will pray another one in the future. So blessed to have you as a friend.
Ann,
Thank you for your words, your prayers and your friendship. Grateful for you and Jim!
Oh Becky, I don’t even know what to say, my eyes are blurry with tears…….I have been thinking about you all week. My prayers and my thoughts are with you and your family.
Dale,
If you were thinking about me all week that means you remembered I was having a big appointment. Thank you for being so sweet to do that!
Glad you got through that hard week–finding He is faithful in all things. Ruth
“underneath are the everlasting arms”
Ruth,
The morning that you left that comment I had just read in a devotional the story behind that hymn. I already had it on my mind when you commented and then Deb mentioned it, too. Such great words!