Dangling Threads and Sacred Secrets

Unexpectedly, for me, during my four weeks of radiation, the small space holding five chairs six feet apart had become sacred ground. For the last four weeks I had peered into weary masked covered faces,hospital gown clad women, sporting caps and scarves on baldheads, while purses rested in nervous laps. We seemed eager to put our cell phones to the side, peering into each other’s eyes while we tossed a fragile common thread across the heavy waiting space, trusting it would be caught without being torn.

Thankfully, each time it was not only caught, but woven into a shared tapestry of hope and encouragement. The woven fragile threads of hope were life giving.

As I looked into the faces of my fellow breast cancer friends on the morning of November 12th, I was suddenly keenly aware that I was possibly entering into a season of “survivor guilt.” It was my last day, and I knew their paths were so very much harder than mine. Though my cancer was found on both sides, when surgically removed it was discovered to be non-invasive, negative for the presence of hormones, and self-contained. My oncologist told me that I was in the minority of 20% of women who have this favorable diagnosis. I wanted to believe him. Yet, surprisingly, I now knew for to certain, after hearing the stories from these very brave women, that he was right. I was definitely in the minority. However, I had difficulty being joyful on this day of ringing the bell, knowing I was leaving behind friends who were physically scarred and spiritually scared.

When this questionable journey began for me in mid-June, I knew that, if it were cancer, my precious mother would not be able to process this information. With her experiencing the beginning of dementia, along with a significant decline in cognition, I knew I could keep this secret and gift her with one less major life event to worry about. I succeeded. So, if this is the first time you are hearing about this news, please know it was with good intentions. I ask that you continue to keep my secret sacred from her.

You may have a sacred secret experience of your own this memorable year of pandemic 2020. If you do, you are not alone. Ken and I pray that God will give you a few compassionate friends, to whom you can toss your thread. You just might be surprised how quickly someone may grab on for dear life; both yours and theirs. We sometimes forget how utterly and extremely connected our threads are until we are in desperate need of someone to catch our dangling, lonesome string. Let us take a cue from Mary as she tossed her secret thread to Elizabeth, praying it would be caught and held in holy space (Luke 1:42).

Along with my favorable cancer diagnosis, our year ends with Ken’s leukemia remaining in partial remission, while he continues to participate in the clinical trial. Our scheduled trips to Houston will now include follow-up visits for both of us. We are grateful beyond words to those of you who secretly prayed for us and gave significant secret financial assistance during our frequent and tiring visits for tests and treatment. Thank you!

This Christmas letter is dedicated to all those brave cancer souls who continue to fight the terrible battle.

Blessed new year from two extremely grateful cancer survivors!!

             Ken and Sandy

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Making Room

 

As I drove away from our house, the silence was broken when I heard these words from the back seat, “Nana, do you sometimes wish that you didn’t have a ‘play-room’ in your house?” Surprised by Kensley’s question, I said, “Why do you ask me that question?”  She replied, “Oh, I don’t know.  I was thinking that maybe you would want it to be another kind of room if it weren’t a play room.”  

 I thought for a few seconds and then said, “You’re right, I could make it any other kind of room, but I like having a place, a “room,” for you and Ava.   When you’re not at our house and I’m in that room, those toys, books, dolls, and puzzles remind me of you even when you’re not there. I like it as a play room.” 

 When Kensley was born, nine years ago now, what started out as a placein a room for a few toys has now grown to a “play room.” I guess you could say that my love for her and Ava has grown to include more things for them to enjoy. This surprise question and brief conversation caused me to think more about the idea of “making room” in our lives. It’s easy to “make room” when life is calm and there are no worries.  It’s making room for the hard parts of life that sometimes drains and tires our spirits,and yet it is absolutely necessary.  Life’s storms sometimes tend to take away any “extra room we may have.

 While scriptures surrounding the Christmas story remind us that there was “no room” for Mary and Joseph in the Inn, these young parents made room for Jesus in the space they were given, an animal stable. In that day, stables held a “manger,” a feeding trough for animals.  Mary used what she had to provide a bed for her baby by using this trough.  

 In the last year, we have had to make adjustments, to “make room” for frequent doctor appointments, travel days, and hotel accommodations.  But God has given us grace, energy, and the financial means to “make room” for these necessary things, during Ken’s clinical trial treatment for leukemia.  Our year ends with a good report that his leukemia is now in partial remission. Our scheduled visits to Houston are now once a quarter instead of every 28 days. He does have to deal with on-going fatigue from lack of sleep, a side effect of the treatment.  

 Last Christmas was a very tough time for our family, being full of questions, uncertainties, and fear, and our space for Jesus felt “sparse; however, we knew He was there and that He had room for us.

 Our Christmas wish for you, this year, is that the room you offer to Jesus will be the perfect space He is meant to have; a place in your heart which is only reserved for the baby in the manger.

 This year’s Christmas story is dedicated to our little granddaughters, Kensley and Ava, who will always have a room in our home, and a special place in our hearts.  

 Merry Christmas!!   Ken and Sandy

Bountiful Blessings

“We will sing unto Jehovah the Lord, for He has dealt bountifully with us.” – Psalm 13:6

“Here, let me get that for you, Ken,” the gentleman said as Ken approached the shopping cart return section of the supermarket parking lot. The man took a quick look at Ken’s blank stare and then said, “I’m going to make this easy for you, I’m Bill W—-.” It was then that Ken not only remembered who he was from some 30 odd years ago, but also remembered his remarkable touching spiritual conversion. Ken and Bill conversed for a few minutes, exchanging information about changes in family and work, before the conversation grew more serious as Ken shared his most recent return of Leukemia for the third time. It was then that Bill said he would pray for Ken and that he would not only pray for him in the days ahead but, with his permission, would offer a prayer right there and then in the middle of the day; in the hot summer sun; in the midst of shoppers moving back and forth to and from their vehicles; in the presence of God’s great unexpected, universal, loving expanse. It was there that Ken felt a long ago familiar hand, once again on his shoulder, while Bill offered the most amazing, unpretentious, and heartfelt prayer for him, his extended family, and his cancer journey. Then, as quickly as it began, within a few minutes it was over; an unexpected, yet God ordained, visit ended. Bill climbed into his truck, Ken entered his truck, and they intentionally drove away from each other that morning, just as they had unknowingly driven “towards” each other earlier that day. With a full heart, Ken arrived home and shared this moving encounter with me. While we both cried, we felt the deep sense of this verse in Psalm 13 that King David, once a shepherd boy and later a king, penned centuries ago: “He has dealt bountifully with me…. “

And, indeed, the Lord has blessed us deeply beyond all measure. When we stop to think about where we were late last August when fear enveloped us, and the difficult autumn and strained Christmas holiday season, it all does, quite simply, feel like we have experienced the “bountiful blessings” of our God. Let me share a tiny glimpse of our journey over the last ten months.

Spiritually – We continue to experience prayers from those who sustain us.
Financially – We have received more than adequate financial assistance from friends, family, and cancer organizations, which has met our once overwhelming financial obligations.
Career wise – While Ken did have to retire unexpectedly in January due to certain side effects from the clinical trial drugs, the Lord has blessed even that unexpected decision.
Prognosis – The latest scans and bone marrow biopsy reveal that this clinical trial drug, BGB 3111, continues to kill cancer cells. Dr. F. is now using the term “partial remission” to describe Ken’s Leukemia response to the clinical trial medicine.
Emotionally – We are counting our blessings:

The Lord continues to give us energy, emotional and spiritual strength, and financial resources to make the trip to Houston every four weeks; our June trip was trip number 13.
Sandy continues to pastor St. Andrew.
We both continue to enjoy our precious little granddaughters.
Ken’s adjustment to this medication has now given him enough energy to enjoy working in his yard, completing projects which had previously been placed on hold.

So, indeed….. we sing – this marvelous verse in our spirit…. “the Lord has dealt bountifully with me.”

Unexpected Suffering; Unexpected Light

I’m struggling to put up an outside Christmas wreath on the lamp pole, a light. The only wire I could find is not the right weight. The wire is flimsy and the wreath is heavy. I’m stretching on my tip toes, about to drop the wreath and I’m thinking about a text a friend sent to me early that day. She wrote, “There’s nothing easy about your life right now.”

It seems since August 22, nothing has been easy for Ken or, for that matter, the entire Brister/Collins bunch. It started with the recurrence of Leukemia for the third time, followed by the health issues of our oldest daughter, causing her multiple doctors visits, tests, tears, and questions. She is now much better. Presently, we are dealing with my mother’s recovery from a bad fall, which took place October 27, resulting in a broken hip, surgery, extensive therapy, recovery at home with round the clock care and sitters and, now, assistance from family members 3-4 times each day. But, as others have reached out to us, we have learned that most everyone also has his or her own burdens. A son with an addiction; an unexpected death of a brother in law; ongoing symptoms of Parkinson’s disease; a grandchild who is shuffled back and forth between two separated parents. The Brister’s are not the only ones who have dark times in need of light.

This Christmas season we were reminded of how Mary and Joseph suffered from the first announcement of the coming birth; a baby out of wedlock, conversations with surprise angels, dreams, unexpected trips in unpredictable weather, moving to another country after the birth of Jesus instead of returning to their familiar home. These were just a few of the challenges this teenage couple faced. And yet Mary and Joseph had lights of encouragement throughout their ordeal of suffering; the mysterious visit from the shepherds, the provision of the stable from the outside weather (though it wasn’t the Inn), the reassuring spirit of Elizabeth during times of anxiousness and doubts…. and, years later, the visit from the Magi bearing gifts.

We, too, have had rays of light in the midst of upheaval. The calls and texts that arrive anytime from 5:30 am from an early morning prayer warrior to the late evening contact saying “checking in” on you, and from my mother’s social worker who walked away from her desk,towards me, and said with intention, “…. and how are YOU?”, to the kind voice at the other end of the telephone from the American Cancer Society telling me each month that they have located a room for us at a discounted rate. But… most recently, and most touching, is the re-connection with a woman named “Wanda”, who is now the home health aide of my mother, Maggie. Wanda attended a Bible Study time I coordinated over 30 years ago at Abraham Mission; a small mission center located at the edge of the Pineville projects. Abraham Mission offered spiritual support and contact to underprivileged families and children. Wanda had a difficult childhood – but she is now doing well. She is giving assistance to my 91 year old blind, deaf, disabled mother – the intimate gift of a bath, shining light into Mama’s darkness. She is offering up prayers of healing for the man she only knew then as, “Mr. Ken”, who picked her up on a van each Wednesday evening, bringing her and her siblings to a small mission center… She still speaks about how that ministry was a “light” to her and her family. Wanda, Lonnie, and Marcus desperately needed the same light we so desperately need and are now, ironically, receiving from her.

While Ken’s clinical trial medication seems to be working well at controlling his Leukemia, he is now suffering from chronic insomnia, which we feel is a side effect of this drug. Therefore, he has decided to retire earlier than planned. This, too, is an unexpected decision, but we are at peace and are trusting in God to meet our needs during this time of adjustment, just as He always has…

Epiphany is tomorrow, January 6th. It is the time when Christians remember the Wise Men who visited Jesus. They were able to find Jesus only because they were “intentional” about following the “light” which appeared in the darkness of the heavens.

Sandy

Nervous laughter – Songs of Joy

The gentleman entered the crowded elevator and stood right in front of me. Ken was in another area of the hospital and I was on my way to meet up with him. The doors on the elevator closed. There was silence. Then the silence was broken when this gentleman said, “How is everyone today?” We all spontaneously gave words in response. I heard “fine”, “doing O.K”, “doing good”…. Some individuals just sort of gave out a labored moan. Then I said, “We would all be doing much better if we didn’t have to be at a cancer hospital.” Then the elevator erupted in ‘a nervous laughter of agreement.’ I finished by saying, “but if we have to be someone WITH cancer, this is the best place to be.” Again – spontaneous agreement. The doors on the elevator opened, on a series of different floors, and cancer patients and their caregivers exited, heading to their next appointments of the day.

There’s something about “nervous laughter.” It’s a laugh that’s not really a release of joy, but a laugh that is forced, maybe because it is expected. There’s a lot of that kind of laughter, I’ve observed, at MD Anderson. I see it as a “hopeful” laughter. I see it as an expression of what one “wants” in the future: A good lab report; a doctor who has time to answer all your questions; two empty available chairs together in the waiting area, so you can sit beside your loved one while he waits to hear his name called; or, time for a cup of coffee between appointments. But, most of all, a cancer patient wants to know, and longs to be reassured, that the treatment is working. And we were able to hear those words at this visit. Thanks Be to God.

Monday’s visit at MD Anderson with leukemia specialists revealed that lymph nodes are smaller and blood work is improving after being on the BGB 3111 drug for one month. Also, after being on this drug for one month, Ken has suffered no side effects and has been told he probably won’t experience any if they haven’t already occurred. Are we elated? You bet!!! …. Yesterday we cried happy tears of joy. Today is my birthday. But, I received by gift yesterday…. My nervous elevator laughter was turned to pure laughter of joy at the sound of this wonderful news.

Psalm 126:2 – “Our mouths were filled with laughter, our tongues with songs of joy.”

We continue to be blessed by your prayers, your concern, and your deep love for our well-being. Due to these frequent trips, we have sought financial assistance from several cancer organizations. In the ten years Ken has been dealing with his leukemia, we have never had a ‘need’ to seek additional help. This time is different, and God has blessed us with what we need – even over and above what we expected. One of my prayer partners texted me this morning, “God gives us what we need when we need it.” That is so very true.

We return to Houston in one month, November 12th.

Different

Journal entry by Sandy Brister —

When Ken was first diagnosed with CLL in 2007, he expressed two main concerns. He said – I hate 1) – the changes it will bring to our family, and 2) – the attention it will bring to me. Initially, that fall, we went several weeks without anyone knowing except the two of us. He dreaded sharing this devastating news, because he knew once he shared it, then others would be directly impacted. Nothing would be the same. And he was right. A cancer diagnosis, along with the treatment required, affects not only the patient, but friends and, especially, family members. Cancer, along with any long term health crisis, changes the patterns of life from what they once were; life has become different. But different doesn’t always mean “bad” different.
Each time the cancer has returned our response has been different. Why? Because ‘we’ are different. Age, along with life experiences and perspective, causes us to respond differently.
When our two adult daughters, Ashley and Bailie, were told about the cancer returning, they were,obviously, upset and alarmed. They remembered that chemo therapy would not be an option. They remembered that the oral medication available last time was not “affordable” for their dad 3 years ago. They both wondered what the options of treatment would be; they are both extremely close to their dad. They processed this news in different ways.
Late one night, we received a text from Ashley. She wrote these words:
“I pray this journey makes us all different…. for people to look at us and know God has changed who we all are because of what HE has brought us through.”
She sent the above message to us and attached the following video.
https://www.youtube.com/watch?v=xUT4trsrBCw – Micah Tyler – Different

Summary from this past Monday – September 24 – MD Anderson visit:

Thus far, Ken is tolerating the BGB 3111 oral medication very well. At this point, he has no side effects except for some intermittent fatigue. He has now been on the medication for 10 days. Blood levels are exactly where the doctor said they would be… including a high white count. We are finished with the weekly visits and now will return on October 15 for follow-up blood work and doctor’s visit in the Leukemia Clinic at MD Anderson. This will be followed up by monthly visits for one year.
Thank you for your prayers!!!
We feel them.

Breathe

Journal entry by Sandy Brister —

Ava and I fell backwards out of the backyard swing last week. Before you gasp, thinking, “how in the world?….” – I really can’t answer your question.  It all happened so fast.  Toddler in lap, back and forth, she’s holding on to the chains on each side, I’m holding on with my left hand with my right arm across her body in front of her.  She decides we are finished swinging, I go to stop our forward and backward motion, and before I know it we are heading straight backwards, toward the ground.  I knew it was coming but I couldn’t stop.  All I knew to do was let go of the chain, hold her tight and let it happen. My back hits with a thud, and we are face up looking at the tops of pine trees.  She immediately starts crying, I roll her over to the ground from my chest. She stands up. I stand up. She continues to cry. I laugh and I pick her up in my arms and we head towards the backdoor to go inside.  I comfort her, telling her that we are both fine.  She stops crying and we enter the house.

Life is a lot like swinging.  One moment everything seems fine. Back and forth, air swishing by your ears, bangs in your eyes, fresh air in face, legs moving back and forth, holding a precious little life, feeling all is well.  Then out of no where, the air is suddenly knocked out of your lungs – and with one strong “thud” there’s no air.

Ken and I knew his leukemia would return.  We were told after the first time, he would get about 6 years of remission time. It came back just as predicted.  When it came back the second time, we were told he would get about “half” the time he got the first time. And now, for the third time, three years later, it is back again, and even though we saw it coming, even though we were told it would return, we feel as though the “wind has been knocked out of us.”  However, we are believers, and we know the “Master of the wind.”

Now that we have gained our breath back, with the help of Jesus Christ, we have a plan. This is our plan.  We have in fact, already begun the plan.

On Monday, Ken started a clinical trial at MD Anderson. He is patient number 6 in phase 2. Its short name is BGB 3111. Its long name is Zanubrutinib.  It is in pill form.  He will take 2 each morning and 2 each evening, 12 hours apart.  We will travel to MD Anderson once a week for a month; then once a month for a year. Then, once every three months for the rest of his life – or at least as long as he is on this medication.
This pill has had very good results in patients with his particular type of leukemia, CLL – Chronic Lymphocytic Leukemia. We are encouraged; and we have hope.

I will share more later, about his special relationship with Yan, his awesome research nurse.  But for now, we ask that you join us in the following prayer concerns:

1 – …. That the side effects will be minimal
2 – …. That we will sense God’s peace and presence. (He seems to go and come at times – due to our ‘humanness’)  We know he is there – we just don’t always “feel” him… fear becomes real.
3 – …..That his business will ‘thrive’ throughout this financial challenge. Retirement is not an option at this point.

Our mantra scripture passage at this stage in our journey is Psalms 46: 1-7. “The Lord is our refuge and strength, an ever present help in trouble.  Therefore we will not fear….”

Initially, I will try to post weekly.  This seems to be the best way for us to keep loved ones aware of this journey.  We really don’t want to go through social media (Face Book), at this point.
Knowing we are loved and prayed over gives us strength for this journey – so thank you so very much for your love and prayers…..

Sandy (and Ken)