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

Into His Hands

Cancer sucks...Steroids suck...and the combination of the two suck big time!
       For about a month, I was on increasing doses of Dexamethasone. The good thing about this steroid is that it really helped control the tumor pain in my hip bone and general abdominal tumor pain.
The bad things about this steroid are: weight gain-I've literally gained 40 pounds in two months, that's ALOT! ; this steroid causes you to have what's called "moon face", however, it doesn't just attack your face, it also attacks your neck, the back of your neck and your abdomen. Your face swells to roughly the size of a basketball - then your neck and abdomen follow suit, finally, a large swollen hump forms on the back of your neck. So for the past couple of months, I've looked like a chubby,  pregnant Hunchback of Notre Dame. Nice. I could handle all of that until one day my neck and face were so swollen that I couldn't turn my head. My hands and feet swelled so badly it caused my neuropathy pain to increase and my face was so swollen it felt as though it would crack and split at any moment. I'd had enough (or so I thought). I spoke with my Doctor and began weaning off the steroids. Within a few weeks I was finally off of them. The swelling was really beginning to decrease and I thought I was feeling better. That quickly changed.
       The tumor bone pain became so bad that I walked with a noticeable limp, my energy level quickly dropped as did my oxygen levels. I developed a wicked rash over my face, neck and torso. My hospice nurse spoke with my Doctor. My doctor felt the cause was going off the steroids. Cancer cells produce a protein called cytokines. These nasty little buggers cause everything from nerve and joint pain to apparently rashes. This was being suppressed by the steroids and allowed to go crazy once I stopped them. 
       Yesterday, we met with my Doctor. She examined the rash and still felt it was due to the cytokines being let loose. So.....it's back to the steroids. We are going to do the lowest dose possible to control symptoms while managing the side effects.
       Jay and I have always said that my Doctor has a very keen insight into what is going on health, spiritually and emotionally with me.
 During my check up two weeks ago, she suddenly stopped, placed her hand on my shoulder, and said, "I just feel that I need to share something with you." She took a seat and showed us a chart. The chart is specific to advanced stage cancer patients under palliative/hospice care. The chart reviews the percentage of the patients activity level, evidence of disease, self care, appetite, level of consciousness, etc. Once that is assessed, an Estimated Median Survival in Days is given. She shared the chart information with us and shared the # of days (months) she feels I have remaining. Although it was difficult to see in black and white, it was information I had been praying about - I really wanted to know. It was as if the Holy Spirit told her soul what my soul needed to hear.  She also gave us a great explanation on how the trajectory of advanced cancer happens. She said that cancer patients have a lengthy time of level/baseline. They do treatments, they have good times of feeling healthy. Then very rapidly/suddenly, they experience a decline. No one can predict when it will happen. She asked me if I had everything ready. I told her that I told her there were several thing I still needed to do, however, I have been preparing mentally, spiritually and getting paperwork, etc prepared.
       During our visit with my Doctor yesterday, she asked again if I was ready. I told her that I was much closer, but still needed/wanted to complete a few things. She looked me right in the eyes and said "the trajectory (decline) is what frightens you the most, isn't it?" I told her it was. I told her that I am always hyper-vigilant and on-guard when new pains and symptoms appear - wondering is this it?
I don't want to be caught off guard. First, she told me "don't be hyper-on-guard. It's a waste of your energy and you do not want to waste one precious ounce." Second, she told me "ask God to give you a warning or make you aware. This is not an unreasonable request of Him." I totally agree! I've asked God to be merciful with me throughout this and I will now also be asking Him to give me a "heads-up'.
       I haven't written this blog earlier because we wanted to be sure we were able to have as many face-to-face talks with our families as possible about the timeline. So far, our families are in two camps: Camp Denial and Camp Reality. I have to say, there are many more people in Camp Denial. I personally bounce back and forth depending on the day & how I'm feeling on any given day. I've read several books that say denial is actually a healthy coping mechanism for most people so let them hang out in Camp Denial as long as they want to.
        My hospice nurse visited today. We had a nice long talk. She said that during their team meeting, they discussed that My Doctor went over the life expectancy timeline with me. She said they all just sat in silence for a while. She said they rarely have someone enter hospice early as we have chosen to do, and they rarely have someone so young in hospice. It's hard for them to grasp the timeline because I look healthy, I can still do some things like laundry, some cooking, etc around the house. She told me that she has joined Camp Denial. I discussed what my Doctor told me about asking God for a heads up; sign; warning...whatever you want to call it. She said that I will know. She said one day I will suddenly feel terrible, tired, and think to myself - yep, I'm dying.
       I do have a few milestones I want to happen before I go to heaven. I want to spend Thanksgiving with my families. My TX family will be here for Thanksgiving week, and we will have to work out early/late Thanksgivings with the rest of our family. 
My precious loves will be be making trips here in late October and early November. Their presence is a balm to my soul and having them all here gives us a wonderful sense of normalcy, if only for a while. Please pray that I will feel well while everyone is here.
I want to see snow - LOTS OF SNOW! I want to have a beautiful last Christmas that is white and lovely. I want to be able to help decorate my house and make cookies - the whole nine yards. I want to go on a Vegas trip with my Mom and Roger that we have planned for December. I want to celebrate New Years. I want to celebrate Jay's birthday.
       There are so many items on my bucket list that will have to remain unchecked. Most involve travel and things that I am simply unable to do physically.
I trust that heaven will make my bucket list look sadly pathetic.
       Jay asked me one day - with all the books I have read about heaven - do I anticipate being there? Yes, I do. I cannot wait to meet Jesus face-to-face. I cannot wait to praise Him and praise the Father in their ACTUAL PRESENCE!
I am excited about exploring heaven-what will it look like? What amazing things have been prepared for us? I'm delighted at the thought of being reunited with my PawPaw, Jay's Dad (My Turnip), Jay's Grandparents and friends that will be waiting to welcome me. I am thrilled at the idea of actually meeting so many people I admire and have only read about: Paul, John, Peter, Mary and Martha, CS Lewis, Corie Ten Boom, Kara Tippets, Joey Feek - my list could go on forever.So - yes - I do have an anticipation of heaven. I also have a sadness that leaves me heartbroken and undone when I think about who I am leaving behind:
The One Whom My Soul Loves - My Jay.
The First Man I Ever Loved - My Daddy.
My Mom - Sweet, Sassy, The Best Foot and Head Massager Ever.
Charla - Kind Hearted, Always Puts Others Before Herself. Loved by so many!
Roger - Gentle and Kind - a Gift to All Who Know Him.
Lois - My Second Mom From the Beginning - Always There No Matter What.
My Brothers and Sisters In-Love - They are so encouraging and loving. They are a blessing to us!
My Nieces and Nephews - They are all so sweet and lovable in so many different ways. They are sweet, they pray for us, ask about us and are just such a special gift to us.
My Girls - Friends like these ladies come along once in a lifetime. God sends them into your life for a reason- unconditional love.
       These are the ones that my heart longs to stay for, yet I know that I can't. So - I will give them all to God the one who created each of them knows the best way to care for them. Into His hands I will place them for the safest of keeping, just know that I love you all with a love that cannot be measured.

Blessings,
Mandy