"Lasts"

A friend asked me if I ever thought about "Lasts"...if it were possible to even comprehend.
My answer:
All. The. Time.

With each week that passes, new and worsening symptoms make this journey all the more real. Pain medications have been doubled and still the pain breaks through. Oxygen use has been increased to anytime I am up and about, and frequently when I am resting. Fatigue has greatly increased. 
Each time a change occurs, a "Last" occurs as well.

I didn't realize it at the time, but the last time I drove a car was several months ago. Had I understood the significance of that little trip into town, I may have taken the scenic route and just driven around a while longer.

My last vacation was our beautiful trip to Hawaii in April. At the time, we planned to take a few more small trips, including a Christmas getaway to Vegas to see a Cirque show. That is no longer possible.

The last time Jay and I went to dinner, we discussed the possibility that it could be our last date night out. I had a difficult time walking steadily and was quite tired by the end of dinner. Hopefully that will not be our last evening out.

Each visit from friends and family leave me in tears, wondering if this may be the last time we see each other until heaven.

We met with my Doctor this week. Because I am OCD and a nosey Gemini, I again asked about my current progression timeline. She shared with me the information from the chart they use.
She then said, "you know - none of this is an exact science and when it comes down to it - none of us have any control over it."
She encouraged me to work on letting go - letting go of the need to know exactly how and when; letting go of the hyper-analyzing of each new change against the progression chart. She said if I can let go - use my energy in better ways - then this journey will progress exactly the way it is meant to and my level of peace will increase.
Sadly - due to insurance changes - this was my last visit with this precious care giver. 
What a beautiful blessing she has been in our lives. She brings me back to focus on what is truly important - spending my energy on people and events that increase my peace, love and joy. 
This is no longer a time for OCD planning - I've already done all of that. Now is the time to ensure that if any of the moments I experience are my "lasts", that they are truly well worth the energy expended.

Blessings,
Mandy

Guest Post by Judith Durr-Kull

Inspiring, eloquent and insightful describes my daughter, Mandy. She is taking everyone on her journey with her battle with cancer through her blog, Feathers and Blessings.

 Mandy, you have touched the hearts of so many with your humor and beautiful words. You are showing your extraordinary ability to forgive. You encourage each of us to face, deal with our feelings honestly and live our lives by moving forward, all the while facing death.  You are the most courageous person I know.

My journey began as Mandy’s mom. I am amazed this intelligent, graceful young woman is my daughter. She has asked several of us to share our feelings, our thoughts and perspective as we walk with her on her journey. As the mother of this incredible personality, this is one of the most difficult requests ever asked to do in my life.  It is an honor to be your mother, Mandy.

Motherhood has enriched my life. What a beautiful moment when a mother touches the face of her child in the first moments of their life and for me, it is heart wrenching to think about the last. My heart is breaking. Prayers, tears and laughter have always been apart of motherhood for me. Today, Laughter is what I choose to remember. Mandy has taught me that through this journey, love and laughter are the most important for her.  So as often as I can, I will love and laugh.

Mandy and Jay went to the doctor recently. The doctor asked if Mandy had everything in place…trust me, she does. Mandy was also given a time period based on charts for the medical profession.  Jay’s wonderful response to Mandy is, “ There is no expiration date stamped on your butt.”  These two people are strong and smart. They are sharing their strength, courage and journey.

I do not know how do this part well…I would rather be drinking my cup of Earl Grey tea or as Mandy has introduced me to, “London Fog” from Starbucks. I would rather be in the studio painting or in my garden, just not, writing or being on this journey, facing my feelings and the eventuality of losing my precious daughter.

As a mother who has prays for her children happiness and peace, I can say, my prayers have been answered. Mandy found her foundation in Christ. She found her happiness, peace and the love of her life with Jay Smith, her wonderful husband. She and Jay have created a loving and peaceful home. Mandy is cherished by her friends and family and she gives to others in the most incredible ways.

Mandy is talented and grateful…recently I watched Mandy prepare one of her many elaborate gift baskets you would think would have come from an upscale boutique. She wanted to thank the nurses at the radiation center in Flagstaff after her final treatment.

Her beadwork is beautiful. She creates bracelets and necklaces. She paints and loves color. Speaking as an artist, she is very good. 

Her homemaking skills are fantastic. She is organized, as she says, “bordering on O.C.D.”.  We have laughed about the DNA passed down and shows up.  She peeked in my clean closet (it is not always clean and organized) one afternoon and said, “So that’s where I get it.”  You know it is a wonderful day for a mother when your daughter asks you to visit for a week and help organize an already organized home. 

DNA shows up when you can finish a sentence or have the same thoughts about the same things and the same time.  It is a wonderful gift for me to hear, “I get that from my Mom.”

Humor and Mandy…in helping to organize that week, I was helping to arrange closets. In the guest room, I found a cardboard box on the top shelf of the closet. Thinking it needed to find a “place”…I asked what she wanted me to do with the box…hesitation from her. She promptly takes the box sets it on the bed and proceeds to open it, she begins to explain the urns she has ordered for the family.  “What!!! Wait!!! I was stunned. I never thought about her preparation or what was in the simple cardboard box and what it represented.  No way, no one thinks this far ahead and it is in your closet! This is Mandy!  She was laughing at me, the look on my face and after I collected myself, we were both laughing. Mandy is making sure Jay or someone else will not have to make this decisions.

Mandy is concerned for Jay’s needs now and what he will need later.  She is always thinking how he will take care of himself.  She is concerned about her family and friends. She is always asking what we need. She has an uncanny gift of knowledge and preparation. She is allowing us to help or visit as her strength is fading. Mandy is teaching us that this all part of the journey and it is in God’s hands.  Love is all there is. This beautiful child is my daughter.

There are tears through all the laughter. Mandy says “We cry ugly.”  It is not pretty when we cry. There does not seem to be enough tissue, our eyes swell up, our noses turn bright red, we talk funny because our noses or plugged, UGLY!

Knowing there are no more options for Mandy is heartbreaking.  She has been so strong for so many years, through everything. She is strong through everything and she described this to someone as “the long goodbye.” If you know her, this is not goodbye. It is see you soon.

There have been some “dump outs.”  Mandy’s grace has taught me there is not enough time to put up with drama or negative energy.  She only has time for positive and Love. An unkind word, insensitive, inconsiderate person sends me over the edge but not Amanda. Cancer is sapping her strength and she will respond with diplomacy. She will tell me to let things go, “maybe they are having a bad day or perhaps there is something going on in their lives we know nothing about.  The roles have reversed. She is amazing. When I would rip out the heart, my daughter reminds me “not so fast.”

There is no doubt about a Mother’s love for a Child. My wish for everyone is put away anger, find love and be inspiring to someone. Love brings me to my knees and gives peace. The essence of Mandy’s beautiful heart has reached so many, reminds us to Live, Love and Laugh.

Judith Durr-Kull

Season of Thanks

Praise the Lord, Give thanks to the LORD, for He is good, His love endures forever. -Psalm 106:1

I give thanks that God has surrounded me with my loves!
     They arrive on wings of love and prayer. They lift our spirits, give us strength beyond measure and infuse some much needed normalcy into our lives.
     They come bearing award-winning chili recipes and smoked briskets; chocolates and Swedish Fish; snugly slippers and crafts galore...they appear with gifts to buoy our spirits and make us smile and laugh.

                       Most of all - they show up with big hugs, big tears and big love.
                       Their singular goal is to wrap us in their arms and love us 
                       through the days they spend with us.

     I fight the frustration of not being the hostess I once was. Instead, allowing others to give us the gift of serving us has been the most humbling of experiences. My fierce independent and stubborn streak have been overruled and I am learning how to accept gifts of service and love gratefully and gracefully (not always so gracefully).

     My loves are extraordinarily patient with me, knowing just how challenging this is. They allow me to do what I can and aren't afraid to tell me when they feel that I'm on the verge of over-doing it. They urge me to rest and I've begun listening to them and to my body - resting more.

     We endeavor to capture our time together with photos and videos - trying not to miss any moments - we smile and laugh and hope to emblazon these precious times on our hearts and in our memories.

     We often discuss the hard topics and share a box of Kleenex while we share our hearts. Often, we are not certain how to express what is on our hearts, so we choose laughter over tears.

     Each departure day leaves a hole in our hearts and our home. We long for the time we can be together again - never saying goodbye...instead, leaving one another with "I will see you soon..."

Blessings,
Mandy

These Days

These days-an entire Saturday spent cleaning and doing laundry, has been replaced by clean a little when you can and toss a load of laundry in when you remember...

These days-hours spent cooking and baking, have been replaced by whatever can be made in 30 minutes or less...

These days-long evening walks have been replaced by needing oxygen after a short walk around the block...

These days-long days at work have been replaced by long days on the couch reading books and watching TV...

These days-snuggling in bed with My Heart, has been replaced by 'I Love You' signed to each other from separate beds...

These days-long ER visits have been replaced by a hospice nurse who greets us with smiles, hugs and treats for our sweet fur babies...

These days-endless to-do lists have been replaced with quiet, reflective time. Time to read multiple devotional books and bible studies. Time to spend quietly in the Presence of God...

These days-boundless energy has been replaced with watching the birds swarm the feeders in the backyard; practicing meditation; and talking with Jesus while swinging in my hammock...

These days-dinners and evenings out with friends have been replaced by the most precious visits from friends far and near. A time to truly be together-laughing, crying, sharing our hearts and souls...

These days-taking things for granted has been replaced by seeing life and the world through fresh eyes. Eyes that appreciate beautiful fall weather. Eyes that enjoy watching a fluffy squirrel work to store away his winter food stash...

These days-the question of 'Why Me?', has been replaced with one, solid affirmation: 'I love you with an everlasting LOVE.'...

These days-anxiety over treatments, scans and scary snorts have been replaced with peace in 'just being'; just knowing that God has the timing of our lives in His complete control...

These days-tears of frustration and fear have been replaced by tears of love and gratitude (and some sadness) for my loves who surround me with their prayers, love and hearts - knowing that each and every tear has been seen and captured in His bottle - the One who cries right along with us...

These days-fear of dying has been replaced by a hopeful expectation of a place more beautiful, peaceful and joyful than my heart can fathom. Knowing that when I reach the other side, the first face I will see is that of Jesus, fills my heart with unspeakable love and joy...

These days, I live in gratitude that I've been given the gift of learning the meaning of TRUE LIFE...The joys of simplicity; slowing down and truly getting to know the hearts of those you love; spending peaceful, quiet moments with the One who makes each moment possible...


Blessings,
Mandy

Guest Post by: Carolyne Steiner "A Three Strand Chord"

My precious friend Mandy asked me to write a guest blog.  I said I would because I’d do anything for my friend, including shave her legs if Jay’s man card doesn’t include that option.

                                                              Shopping in Sedona

But now, I’m almost at a loss for what to say.  How do you speak words when frequently there just aren’t words?  I love my precious friend.  I have almost from the first time we met. 

About 7 years ago, Jay began coming to Skyline church to worship.  He always came alone.  I wondered why.   I didn’t know that his wife was sick and frequently just unable to come.  Then one Sunday, Mandy came with Jay and he was quick to introduce us.  I adored her immediately.  (Jay later told me that the first time he met me, he went home and told Mandy “I’ve met your soul-mate.”)  It took us a while to knit together a friendship, but God has been good, and He has knit for us an amazing friendship.  Mandy, Ginger and I have a beautiful friendship centered around our mutual love for God.   He has made a beautiful three-strand cord.

                                          ...a chord of three is not easily broken... (Ecclesiastes 4:12)

                                                         The Infamous Shopping/Antiquing Day

My precious friend Mandy has shown me how to love, really love, deeply.  She has taught me the value of not holding back in affection.  When she loves someone, she loves them deeply and she communicates that like no one I’ve ever known.  She makes Jay, every family member, every friend, every person she comes in contact with feel like they are the most special individual to her, and we all are.  God is love.  Mandy’s legacy is LOVE.

Walking through this time with her is so very hard, but I wouldn’t want to be anywhere else.   About a year ago, she gave to me and then Ginger a book called Just Show Up:  The Dance of Walking Through Suffering Together by Kara Tippetts and Jill Buteyn.   It’s a jewel of a book about how to be a friend and just “be present” for someone who’s dying.  Who gives you a book like that?  Someone who loves her friends enough to show them how to love her back.  Mandy’s legacy is LOVE.

 Sometimes we cry, sometimes we ask the hard questions that seem to have no answers, like “why her?”  We trust God when there are not answers.  But mostly, we find things to laugh about.  If we don’t laugh a lot, we’ll cry too much.   Mandy calls her big tumor “Grumpy”, so we discuss whether Grumpy is behaving today or not.  We talk about her visits to the “Scary Snort,” (the X-ray machine).   When she was receiving Chemo treatments in Chicago, I’d offer to hold her hair while she puked in the toilet.  She never took me up on that offer.  (Think about that for a minute, then I’ll move on).  We laugh about our dogs, getting in trouble in Sedona, or anything else we can come up with.  We laugh about whether we’re living in Camp Denial or Camp Reality that day, and how we can jump from one camp to the other on any given day.  Oh, we also laugh about the time we made Ginger go shopping with us; painful for her, glorious for us.  Laughter truly is good medicine.

                                              We got into so much trouble touching the car

I refuse to say goodbye to my precious friend, Mandy.  Christians have a glorious hope, a hope of an eternity with our loving God and Father.  He created us in His image and He loves us with a jealous love.  He wants, craves for us to be with Him for eternity.  So I know that we will only be saying “I’ll see you later.”  I’ve told her that I’m thinking of it as her moving a lot farther away than Arizona and I just can’t go visit her for a while.  But I know that I’ll see Mandy again much sooner than I can imagine.  We have talked and laughed and imagined about what we will see and do in Heaven; seeing Jesus face to face and seeing friends and family.  We’ve talked about what we might look like, where we will live (she will have a log cabin, mine will be Timber frame-both in the Heavenly mountains).  I think she and Ginger and I will be beading at some point.  They can crochet, I’m not doing it.  I’m jes sayin.  It’s fun to imagine.  It will be so perfect for God’s people. 

                                                                        Beading                                                                                                              

I don’t know a lot, but what I do know is that Heaven is a wonderful place where “God’s presence with be with mankind, and He will live with them.  They will be His peoples, and He Himself will be their God.  He will wipe away every tear from their eyes.  There will no longer be any death; and there will no longer be any mourning, crying or pain.” Revelation 21:3-4.   

With God in Heaven.  That’s the place I want to be, and its Jesus’ blood shed for my sins, for Mandy’s sins, for the sins of the world that cleanses us and enables us to receive the gift of eternal life.  When the time comes, that’s the place where I know that Mandy will be waiting for Jay, me, and all of her loves. 

I love you bunches my precious friend.

                                                         Shopping/Antiquing in Sedona

Guest Post by: Ginger Hawk

A while ago, I asked a few people who have journeyed with us, if they would graciously write a guest post for the blog. Sweetly - they agreed. 

When my precious friend Mandy asked me to consider writing a guest post about my recent visit for her blog, I have to admit my initial reaction was one of terror. Okay, that might be an exaggeration…but only a slight one. I have not been blessed with the gift of writing (at least not the ability to enjoy doing it), but I am honored that she asked me to do this. So here goes…

I had wanted to make the trip to visit Mandy for quite some time, but for several reasons it had not been possible for me to do so. This past summer it became clear that I didn’t need to put off making it happen any longer, so my husband Mark and I worked it out for me to make my first trip to Flagstaff in mid September. He and I are also preparing to make the trip there together later this month.

Mentally preparing for that first trip, I relied heavily on our dear mutual friend Carolyne, who had gone to Flagstaff for a visit with the Smiths at the end of July and had traveled at least twice before to be with Mandy, even going to Chicago back when she was receiving treatments. Carolyne gave me a general idea of what to expect while there, and I was very thankful for that mental preparation, though I still felt unprepared for what my heart would experience and very much appreciated the prayers of many back home as I embarked on what I considered to be, emotionally, the hardest trip of my life (so far).

Something that became clear when I got to Jay & Mandy’s house is that nothing is predictable when one is dealing with cancer and the multiple medications that accompany it. When Carolyne had visited just two weeks before my trip, Mandy was extremely lethargic and had to nap quite a bit, so they both advised me to bring plenty to keep me busy during those down times. Mandy even apologized that she wouldn’t be her usual energetic self that I remembered, and I repeatedly reminded her that I am a homebody who has no problem keeping contentedly busy around the house. Come to find out, Mandy had been fatigued because of the side effects of a new medication she had been taking and had since weaned herself off of it. So the whole time I was there, while she clearly wasn’t the same energetic person she used to be and was now using a walker and even occasional supplemental oxygen, she at least didn’t have to take extra naps just to make it through the day, and we were able to maximize our time together.

As I think back on it, I find myself remembering three distinct aspects of the routine that developed. The mornings were my alone time. Since my internal clock was operating two hours ahead, I woke up early and had time to myself each morning to think and read and pray, and that’s when I did most of my crying. I didn’t schedule it that way, it just happened. I’m not usually much of a crier, but one of my biggest fears had been not being able to control my emotions in front of Mandy, so I felt particularly thankful that the waterworks happened in private (for the most part).

Each day, once Mandy was up and ready for breakfast, she and I spent many hours sitting in the living room together, drinking coffee and eating ginormous bagels, talking, watching the dogs play, enjoying the beautiful view from their large open windows, and making friendship bracelets. This time was an unexpectedly sweet gift of contented peacefulness and what Mandy calls normalcy, and we were quite aware of the grace of it in the moment.

The final part of our daily routine that stands out in my memory was the evening-time wound care. Mandy has been pretty transparent on her blog about what she is experiencing with the growth of her tumors, and Carolyne had given me even more details. I wasn’t sure if I would be able to handle watching as Jay went through the process of dressing the wound where the tumor has broken through the skin of her abdomen. (As I told Jay the first day, I could never be a nurse.) However, when it came time each night I felt honored that they allowed me to be an observer in the room and found that I didn’t have any trouble being there for my dear friends in whatever small way they needed/wanted me to be (photographer, ace-wrap holder, etc.). More grace.

Though my main reason for being there those few days was to have some precious time with Mandy and to be whatever help I could be (I wasn’t much), seeing how well Jay takes care of her was an unexpected blessing for me as well. I was struck by how he was able to go about the daily responsibilities of life with a calmness, sense of humor, and humility that never showed any indication of the load of stress that I know he carries. He is an incredibly dedicated husband, “nurse,” and provider for Mandy and a sweet daddy to their two fur-babies. It was a joy to witness the deep love that Jay & Mandy share. God sure knew what he was doing when he brought the two of them together 22+ years ago. They have created a space together that is welcoming, serene, and soothing, even in the midst of their ongoing struggles. I have rarely felt so at home and at peace someplace other than my own home.

Mandy spoke freely of what she was experiencing physically, the preparations she has made for the future as well as the plans she wants Jay to carry out for her later on. I don’t think there is anything that she hasn’t thought of or isn’t willing to talk about, and while I sometimes found I had no idea how to respond in those moments, I greatly admired her transparency and candidness. Despite her own periods of denial that she has alluded to in her writing, while I was there I sensed only that Mandy has her eyes wide open, eager to know what to expect and willing to accept it all with dignity. I also admire that she allows her loved ones to process the stages of her journey in whatever way they need to and lovingly accepts everyone wherever they are on the spectrum of acceptance/denial.

There are so many more details of my experience that stand out, such as going for walks with Noel and Manchu and Jay (and once with Mandy too) in the afternoons, rooting for Notre Dame in a football game for the first time ever, sightseeing in Sedona, learning to bake bread from scratch, laughing at J&M’s random quoting of The Big Bang Theory, getting lots of puppy kisses and snuggles from Noel, and of course praying with and for my dear friend the night before I left.

As I look forward to going back in a few days for another visit, this time with Mark by my side, I find that my excitement to see Mandy & Jay is again tempered by my dread of having to say goodbye. Goodbyes have been extraordinarily difficult for me my whole life, and when I left Mandy the last time it was really hard, but I did so knowing I would be coming back soon. I have a feeling I will be saying that this time as well but with less certainty of the when and how of it. What I do know is that God is good and that He will provide what is needed.

Over the past few years I have learned a great deal from Mandy about what true day-to-day trust in the Lord looks like. Her faith has kept her grounded when the basic things that the rest of us take for granted have been taken from her. She has been an inspiration to me as she has so many others, and I am blessed beyond measure to have been able to call her friend. My time with her has been a priceless gift that I will always treasure.

And, Mandy, even though you’ve made me do hard things over the years… like shopping for clothes and antiques (I still haven’t quite forgiven you for that one day) and writing a guest blog post and saying goodbye again and again…I love you BIG! ♥

Ugly Toes & Hairy Legs

While talking with my sweet hospice nurse a couple of weeks ago, she asked me how I was coping with self-care: showering, dressing, etc. I told her that I was doing well. Showering in a chair was quite an adjustment, but I finally figured out a workable system. I told her that shaving my legs was the trickiest aspect to figure out.

Jay, in all his "dude-wisdom", piped in and said, "Hey! Cold weather is here - 90% of the women in Flagstaff will be sporting hairy legs for the next few months. You'll fit in perfectly!"

You have to understand, that we live in a bit of a hippy, granola mountain town. And Jay's right - for the next few months, we will be seeing quite a lot of fur-bearing mammals walking the streets of our town. This girl, however, will not be one of them.

I looked at Jay and my nurse and said, "Promise me one thing.....make sure my toes stay painted and my legs stay shaved! 

I'm not asking a lot here!!

PROMISE ME......

You will not let me meet Jesus with ugly toes and hairy legs!!!



Blessings,
Mandy