On February 24, a week and a few days after a bone marrow biopsy, I learned that I have a new, and more serious health condition than the one I have been battling over the past four years. In fact, it was the chemotherapy I received this past summer for that disease, called Langerhans Cell Histiocytosis (LCH), that is the cause of my new health challenge. Against 99 to 1 odds, the chemo seriously damaged my bone barrow to the point where I have a condition called myelodysplastic syndrome (MDS, formerly known as “preleukemia”).
What I’ve been focused on the past few weeks is once again preparing myself to enter unknown territory. My spiritual journey into more than three years of on-again and off-again chemotherapy I chronicled in my book, “Embraced by God: Facing Chemotherapy with Faith.” Now I am facing the very real possibility that this syndrome (which I and most others have never heard of) will transform itself into leukemia, which everyone has heard of and is just about as scary a word as cancer. In any case, I am facing what I was told was the only possible long-term cure for the syndrome/leukemia — a stem cell transplant.
I knew that was a possibility when the doctors ordered the bone marrow biopsy, but it’s hard to visualize something you’ve never experienced before, so I didn’t think much about it until I met with my oncology team and they began to explain the disease, the treatment, the risk and, hopefully, the recovery. A couple of weeks ago I met with my new doctor, who specializes in stem cell transplants. She has a great demeanor and wonderful communications skills, and I walked away from the appointment feeling much more optimistic about this whole thing than I had in the previous few weeks. The risks are still there, of course, but I gained some optimism and hope after our consultation.
The past few weeks have been good spiritually. With lent just beginning, I have entered into the season with renewed meaning and purpose. At the suggestion of my spiritual director, I have begun each day with the lectionary readings and then meditated in silence on my drive to work. I have found this a welcome change from the news or music. I tend to arrive at work a little more centered and relaxed, a little more in touch with the movement of God in my life, even in the midst of my worries, personnel issues or projects I sometimes don’t feel like tackling.
Talking to my doctor and reading information about my transplant, I know there are tough days ahead – at least a month in the hospital and several weeks of being very sick and weak because of the chemo and other drugs. Then at least another month recovering at home. I am preparing for his stem cell transplant, this new and last line of defense, which will wage war against a disease that has attacked me, literally, down to the marrow of my bones. And here’s the paradox I’ve discovered: Even as I put all my effort—mind, heart and soul—into a fight that shouts, “I will survive,” I am being drawn to an ever-deeper relationship with God that gently whispers, “surrender all….” The wonder of the whole thing is that within this juxtaposition of fight and surrender I am discovering peace, hope and an unwavering God.
25 comments On The Road to Transplant: Embracing a New Paradox
Thank you for the update – I have had you on my heart so much lately.
Love & Love,
-g-
Steve, you are a gift. Thank you for breaking your lenten media fast too share these thoughts with the rest of us. We love you, pray for you and hope for you! JL
Thanks for the update. After reading my Living Faith devotion & Steves story, I’m impressed that I’ve realized how one person, I’ve never met or talked to, can caption my heart like you. Today was a good day for me to think of the God we worship, He’s a good, loving God. Thanks for sharing your journey with ones who love you, are praying for you & Gods best to you with the Stem Cell Transplant. Love to you.
Hi Steve…..sorry to hear about whats going on with you. Sounds like you have been through so much already….hang in there buddy. You seem to have such a positive attitude, which I commend you! You are in my thoughts and prayers. Good luck and keep us posted on your progress.
I’m glad you shared this. It’s good for you and it’s good for us. I like the thought of surrendering to God. That is total trust. I know you are allowing Him to guide you. I am praying for you and your family as you embark upon your next book.
Hi Steve,
Without knowing that you were again facing another big challenge, I was as usual touched by your Living Faith comments of Yesterday (27th) and I share the same feeling as one of the other emailers – how someone I have never met has been touching my heart so deeply since I started reading Living Faith a few years ago. Your courage and faith give me the strength to carry through my troubles – so small compared to what you and your family are going through right now – You are in my prayers -God Bless.
Steve, I have been privileged to read your meditations in Living Faith for a long time now. After reading yesterday’s (27th) I was compelled to look you up to let you know how very much your writings have touched my heart. (thanks to your son and this website it was easy!) You are and will be in our prayers throughout the days ahead. We know this is a most difficult challenge and time in your life and we pray for continued strength and peace for you and your family. Thank you for your writings – you have more to share and inspire us with and we look forward to that. May God bless you and your family always.
Thanks to you all for such supportive comments and fervent prayers…I treasure them both!
Steve
Ditto to Drenda and Lysiane.
Steve, this is the first time I have read your blog. Thank you for your contributions to Living Faith. They have been inspiring for me. I will be praying for you in my daily meditations. Please keep us updated on your progress. Love and blessings to you!
Steve, your writings in Living Faith have touched me this year. I am sorry to hear of your battles. Living Faith has been one of the cornerstones of my life since I was diagnosed with Multiple Myeloma Cancer last year. I, too, have done chemo (plus radiation) and have made it through a Stem Cell Transplant. I can tell you it is not fun, but it is like a combination of multiple blood transfusions plus heavy chemo. I will add you to my prayer list as we confront our challenges. God Bless!
Steve, this morning is the first time I checked out your blog sight. I have been reading your messages in Living Faith for years, but this morning is when I felt touched to check out your blog. God be with you, and your family, through this journey. I will add you to my daily prayer list. May the Sacred Heart of Jesus comfort you through this time.
Dear Steve,
We are members of Ascension Parish in Chesterfield, probably your neighboring parish. I love reading Living Faith. The days that hit home for me and have special meaning, when I get to the author at the bottom, lo and behold, it seems to be most frequently, YOU. Your thoughts touch my soul.
You will be put in my daughter and my prayer basket. Let me explain. My daughter, at the age of 33, died on Easter Monday 7 years ago. She died of a very rare genetic disease called Niemann-Pick Type C. She died at home with a smile on her face and my husband and I feel we literally saw her soul go to heaven. Karen was a typical teenager but in her illness grew very simple and beautiful in spirituality. There is no treatment or cure for NPC. When she was with us we started a prayer basket where we would put intentions, and then every day we would together cover our basket in prayer. I can not tell you how many intentions were answered in God’s perfect plan. Now that she no longer is here, I have my little saint in heaven, and intentions still go in that prayer basket, only she now prays in heaven (I like to think she pesters God.) I will put you in our prayer basket. Thank you for all you give to this world of ours.
Steve, your writings in Living Faith touch my soul. You have been placed in our prayer basket. Let me explain. Our daughter died of a very rare genetic disease at the age of 33 on Easter Monday. A simple and beautiful faith grew during her illness. When she was with us we would put intentions in our prayer basket and ask God to answer with His own perfect plan. To this day, we still put our requests in this basket although our daughter now prays from heaven. (I like to think she pesters God.) Thank you for all the wisdom you give to this world of ours.
Steve, like so many others, my first time at your blog. My cousin gave me my first “Living Faith” book last month to help me cope with my husbands cancer journey. Last june 29th he was given 6-9 months to live. In july, his radical surgery supposedly cured him. In December we celebrated his cure. In January, we were told it got away and was in his lung and bones. No one knows how this happened. Now he is in chemo and doing o.k. but all the side effects and infections are exhausting. Thank you for sharing your journey with us. It helps!! We will add you to our prayers. God Bless.
Like you have been doing; I often spend my drive time praying and meditating on God’s beautiful earth. I will continue to pray for you and all who share their stories with us.
Thanks for the good thoughts and prayers, Barry. My prayers go with you, too…
Steve
“Surrender all.” That’s such a beautiful way to get through the tough things that come our way. It doesn’t mean “give up,” or “fight against it,” simply … “surrender all.” What a peace those words bring with them. You are in my prayers, Steve. Your journey is a blessing to others because you have the gift of words, so you can share it with us.
Thanks, Sue. We were thinking about and praying for you last week during the election. Despite not winning, no doubt you touched many people with your message of faith and family. Thanks for the encouraging words and prayers. All is well right now…
Praying for you Steve, thanks for being willing to share your faith, testimony and journey.
Thanks, Kelly. I appreciate your prayers very much. All’s well right now; waiting for word on whether or not my sister is a match for the transplant.
Steve
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Hi Steve, just wanted to let you know my husband was diagnosed with multiple myeloma in July 2007. He prepared for his stem cell transplant for 2 years and it was completed in June 2009. He came through it well although it was a tough time for him and the whole family. He spent 4 weeks in hospital and still attends his consultant for checkups regularly. I wish you well and will remember you in my prayers. Good luck for the stem cell procedure. Your faith and everyone’s prayers will keep you safe and see through what is a harrowing time for you and your family.
Thanks, Maria. For now, the transplant ended up not being necessary as my blood counts almost miraculously improved on their own. But we’re keep a close eye on it, and we went ahead and harvested my sister’s stem cells.
Thanks for your thoughts and prayers.
Steve
My favourite mantra is “With God’s help all things are possible” and you are living proof of that. May God continue to bless you!!