Tired, Weak & Torn

                                                              Tired, Weak and  Torn

This song has been a frequent repeat on my playlist for quite some time now. My favorite version is the one here by Joey and Rory. I'm fully aware that the song lyrics are I am tired, I am weak, I am worn. Believe me...I am most certainly worn, but I am also quite torn. Most days, my very being feels as though it is being torn in two. Two directions...

One part of me is exhausted, weary, weak and worn. I've grown so weary of the daily fight and struggle... yet, another part of me is petulantly crossing my arms over my chest, shaking my head and fists, saying, NOPE! Not ready to go yet. These two duke it out on a daily basis.

The bone-tired half is drained just by walking the 8 steps from the bed to the bathroom - and this walk is assisted by Jay holding me up the entire way. The 8 return steps leave me shaking and out of breath for at least 5-10 minutes, then it's another painful 10 minute ordeal to get back into bed. The fluid in my body is so overwhelming that I cannot pick my legs up off the bed by myself - Jay has to pick them up and adjust them for me.

Every fiber of my being is crying out, "this is not living! This is not a life! This is merely existing, and it is a great burden for not only me, but Jay as well.

Then we hear from the petulant and peevish other half, who, with heels dug in, says "it's fine - at least you are here with Jay - at least you still get to see him, get to touch him, still get to hear him talk and laugh. You get to look into those amazing blue eyes and just love him more and more. You will find good in today and that will make it all worth it.

Torn...I am completely  altogether torn. Especially now. For the past few months, Jay has been interviewing for a job appointment with our county. I am so proud to say that he is now the Forest Restoration Director for Coconino County. It is an amazing opportunity for him and he will bring so much wisdom, work ethic and value to this position. The timing, however, is a bit challenging. We are heading into one of the worst fire seasons we've seen in a long time. Jay's position involves plans for thinning and managing our forests to prevent fire and flooding - to say that he will need to hit the ground running, is an understatement. This is not necessarily a bad thing - it just presents challenges.

Jay's previous job was mainly work from his home office, so the past year he's been home to fulfill the caregiver role. We have had kind offers of help, however, this has transitioned into a role that requires medical knowledge as well as some unpleasantness that you just don't ask friends and family to do. This week we will be interviewing some home health companies to assist in the care giving while Jay is working. I must admit, it is a very uncomfortable transition for me. I am an easily mortified person, so maintaining my dignity is a big priority. My prayer is that we can find the right combination of care to manage the changes that are surrounding us.

We have been shown time and again that God's timing is perfect. This is where BIG Faith and BIG Trust come into play. You simply cannot make the soul transition any faster than it wants to.
We must remember that God alone is the author, perfecter, and finisher of our story. He knows what we need to be able to handle the twists in our story. He will ensure that whatever happens will ultimately be for His glory and we are privileged that our story can be part of that. We now see dimly, however, one day, we will be able to clearly see the whole big beautiful picture He's been painting for us this whole time.

Blessings,
Mandy

Free Indeed

For the past 18 months, Jay & I have been on the world’s largest emotional roller coaster. As you know, we began with a six month timeline. When your life ticket receives a date stamp, life quickly changes. There’s an urgency to accomplish things, say things, do things so your life won’t feel incomplete or unfinished when you reach the appointed date.

Over the course of approximately eight months, I received numerous date stamps. With each new stamp, the emotional and spiritual preparations would begin anew. It’s exhausting, gut-wrenching, soul ripping work. It’s labor-pain wrapped in fear. Even though I just went through this, I had to do it again.

Finally, we both cried out “ENOUGH!”
We’d had enough. Enough of the crap-shoot date stamps. Enough of the letting go emotionally. Enough of the questioning spiritually. Enough of the grief and pain each new stamp brought. We told our doctors and nurses no more guessing, no more date stamping. Only One knows the truth and we chose to trust in His timing.

That doesn’t mean we were allowed to disembark the roller coaster and everything has been smooth. Far from it. Every day brings new reminders that although we don’t know when- there is a date waiting.

We’ve tried every kind of diuretic available to no avail. The lymph fluid continues to build. At the present time I am bed bound and have been for about six months. The swelling has reached the point that I cannot walk or get into/out of bed without assistance. Jay now has to help me with everything. He has been asked to do things no husband should be asked to do. However, he does it all with love, grace and dignity-all while maintaining a sense of humor and as much of my dignity as possible. This has placed him on the fast track to saint hood.

My legs have begun to weep fluid and are so heavy that I cannot lift them on my own. My lungs are collecting fluid and my kidneys are slowing way down.

Lately I have struggled to be able to hear God’s voice and feel His presence. It was suggested to me that the reason God has given me extra time is so that I could repent of some sin in my life or return to a former way of belief
because we chose not to attend a traditional church here in AZ. Truthfully, this shook my faith to its core and has taken me a while to shake off the guilt those words poured over me. Thankfully, my God is bigger than my fear or guilt.
Through several friends (most don’t know those words were said), have spoken love, truth and life over me. As one precious friend wrote, you are free- there is no more sin to leverage.
The enemy was counting on the fact that I would focus more on my sin than on God’s matchless grace. Thankfully, He has a heart so full of love, He refused to allow me to stay in that murky pit and with loving arms lifted me out and set me on solid ground- holy ground.

As each day brings a new set of trials, it also brings new mercies. As Jay and I deal with the daily emotional roller coaster, we pray above all that we will feel His presence, His love and His light. When the pain and grief overwhelm, we pray that He will shelter us under His wing and keep us safely there.
The unknown is truly frightening and death/dying are full of unknown. It’s hard work separating a soul from this life. It’s a painful and scary process. We have to fight to hold onto His truths and His promises. When we feel our faith begin to shake, don’t hesitate - grab onto the hem of his robe and don’t let go. He will protect you - He will save you. He will love you and never let anything break that love bond.

Finding Comfort

Hospice originally meant a rest house for travelers- for pilgrims.
As a traveler, having a place to stop and rest before continuing to our destination is a beautiful haven. Having a place to rest, re-group and review our final journey plans is a comforting gift.
Not everyone has the opportunity to experience hospice care.  For those fortunate enough to be able to, it is the gift of comfort, rest and grace during the final phase of our journey.

“This is as good as it will ever be.”, I was told last week. Good to know- hard to hear - needed to hear. I don’t want the facts danced around or dressed up to look better than they are.
FACT: I’m dying.
FACT: It sucks.
I was told that because I’m young, my body will give out before my soul does. (They were referring to my internal drive to keep going, not my soul that will fly home to be with God.) My soul says I’m young, I’m not finished with all I want to know and see and do. However, my body, that has been wracked with cancer for many years, can only take so much.
I can actually feel the tug-o-war taking place between the two.

I’m growing weary, my pain is constant yet managed. I live in a fog of pain medication and fatigue. I’m bed bound with exception of the few times a day Jay helps me to the bathroom.
I’m thankful for hospice as I complete my journey. I’m forever grateful there are people who will say, “I’m going to be with you every step of the way. We will figure this out together.” As they work to manage my pain and symptoms, they tell me to do whatever I want/can do. If you want to sleep all day, do it. If you want to stay up and watch movies all night, do it. Gummy bears for dinner? If that’s what you want, do it.
This part of the journey isn’t about chemo regimens, strict diets, and last ditch efforts to stop the cancer. It isn’t about schedules, doctor appointments, meetings, surgeries, blood draws or transfusions. It’s about being as comfortable in as many ways possible. Cancer is far from comfortable-the key is finding what is comforting despite the cancer and decline. Here is what I’ve found comforting lately:
* Easy to read devotionals. My brain fog causes a lack of the ability to concentrate, so easy reading is great.
* Food Network-big shocker to anyone who knows me. I can doze in and out and not really miss anything.
* Laughter- nowadays laughter can be hard to come by. Everything seems so serious. Managing pain, lymphedema, and all manner of random drug side effects and new/worsening symptoms seem to take up most of our energy. So, when something strikes that makes us laugh, oh, it is as if the heavens have opened and presented us with the most marvelous gift. I vote for less seriousness and more laughter.
* Snuggling, sleeping, snoring shih tzus. Our babies give us a great deal of comfort. They sleep with me most of the day and just their presence is comforting.
* Texts and emails from family and friends. Just notes dropped here and there to say I love you. I know I’m not alone, I know I have prayers and love and light flowing toward me always.
* Holding hands with Jay. This simple act has always been a great comfort to me. It gives me strength and peace.

Hospice- a place to stop, rest and find comfort while on your pilgrimage. A group of people willing to walk with you as you take your final steps. A group of people who open their hearts and allow you in so they can help carry you, if need be, on this last path of your journey.

Rest easy, rest comfortably. We will help you figure this out.

Even When You Don’t Feel Like It

Up with the sun-time to begin another day. Time to work and earn a living...Even when you don’t feel like it.

Making her coffee just the way she likes it. Preparing her breakfast and handful of morning medications...Even when you don’t feel like it.

Washing dishes, cleaning the house. Doing the laundry and making the beds...Even when you don’t feel like it.

Stopping your workday to make her lunch and ensure she has everything she needs...Even when you don’t feel like it.

Walking, feeding, bathing the dogs...Even when you don’t feel like it.

Preparing dinner, cleaning up and getting things settled in for the evening...Even when you don’t feel like it.

Dressing changes and wound care. Managing the ever changing medications. Endlessly exhausting trips to the bathroom and helping her back into bed... E,ven when you don’t feel like it.

Grocery lists, grocery shopping. Target, Walmart and Sprouts...Even when you don’t feel like it.

Drying tears, easing melt-downs, gently comforting fears and grief... Even when you don’t feel like it.
               
Most days are so hard , all you want is ESPN, hot wings and some quiet time.
Instead, you say that one day, you will wish you could do these tasks for her just one more time.        
So, weary as you are, you do it all... Even when you don’t feel like it.          

Blessings
Mandy

                                                                                                                                                                                                 

Clumsy & Cancer

Sunday night, one of the things we dread & fear most happened.

Jay was changing our bed linens & I decided to get something from our closet across the room. I simply was not paying attention. It only took a moment-a split second to change the course of an entire night...week...who knows how long...

My right foot became entangled in the bedding on the floor & in an instant I was face down on the ground crying & writhing in some of the worst pain I’ve ever experienced. Immediately, Jay was on the ground next to me trying to assess the damages. All I could do was whisper “help us Jesus. Please help.” I couldn’t breathe & it took several minutes for jay to be able to roll me over to check the tumor situation. He noticed blood on my clothes & called our hospice to send someone out. After several more minutes Jay was able to get me into the bed & begin to see what tumor damage we were dealing with. He began unwrapping bandages & dressings & each layer was blood soaked. We truly feared the worst. The tumor, which measures approximately 8” across x 6” top to bottom. It sticks out of my abdome at least 6”, has surprisingly delicate tissues. As Jay removed the final dressing layer I heard him say “thank you God!” The bleeding had completely stopped. This has never happened before. With the amount of blood soaking the dressings, Jay truly thought he would be dealing with a fatal bleed. As Jay cleaned the tumor, the mantra on his lips was “thank you God!”

The nurse arrived as Jay was finishing the tumor cleaning. She assessed my vitals & damages. My back was bruised & swollen & I was still having a difficult time breathing. My ribs & area surrounding the tumor were very painful. My knee was bruised & swollen. Thankfully nothing appeared broken.

The adrenaline began to wear off & I began to shake uncontrollably. While the nurse went out to get ice packs, Jay put blankets in the dryer so I’d have warm blankets to combat the shivering & ice packs.

My back & knee are still very painful & not tolerating much in the form of bearing weight. Jay escorts me whenever I need to get up.

Today, we met with my nurse. For the past few weeks, we’ve been dealing with an increase in lymphedema fluid building up. We have increased the dose of diuretics, however, they haven’t proven helpful yet. My lower body is quite swollen with fluid & now the upper & lower lobes of my right lungs have fluid in them.

It’s been a very trying week, but the words on our lips continue to be “thank you God...thank you Jesus !” No matter how great the pain, we cannot ignore His hand of protection covering us.
I have always said that when my time come to fly away home, I want it to be a peaceful event. Thinking that it may end traumatically Sunday night really frightened me & Jay.

So, for now I’m only allowed out of bed with assistance & ice packs are my new bff’s. Clumsy & Cancer are a bad combination!

Blessings,
Mandy

Christmas Love

Lately & shamefully, I have been kvetching my limitations.

The edema-the build up of fluid - has returned. This means, I’m pretty much bed bound. I can walk/stand about 5 minutes before the pain & shortness of breath overtake me. The fluid is slightly building in my lower lungs, so any activity leaves me gasping for air.

In my 23 years of being married, this is the first time I haven’t decorated for Christmas. Christmas has always been a big deal in my home. Growing up, cutting down the tree & decorating was a fun family affair. Andy Williams, Perry Como, Bing Crosby & the like wafted from our stereo on a daily basis.
When I had my own home, my decorating grew exponentially each year, until finally, no corner of my home was safe.

Jay was the Christmas Sherpa- hauling boxes & totes in & out of the attic & garage for a solid week while I fluffed garlands, wrapped trees with lights, arranged & rearranged mantles & tables. Excessive? Probably. But I adored it.

Last year, I was a couple of months into hospice during the holidays. Carolyne was here & helped me decorate. This year I was lamenting not being able to do any decorating much less my usual level.
My Jay, however, had other plans. On Friday he decorated the large storage building that is in my view when I look out my window. He then put up & decorated a beautiful tree for the bedroom & even hung the stockings. It’s perfect!

Not many men would recognize their wife’s love of Christmas & spend the time to make her smile/happy cry. That’s the kind of man I married. He figures out what will make me smile & focuses his attention on that. The fact that he worked all week, pulled Thanksgiving together & really just wants to veg out in front of a game doesn’t matter. This will make his bride happy so this needs to be done.

Sacrificial love. We are all called to practice it, yet few actually can or do. While the world teaches us to look out for #1, Jesus teaches us to have a servants heart & think of others more highly than you do of yourself. This is what Jesus calls us all to do- Love God & Love People.
Sacrificial Love- may we all have the opportunity to serve someone in this way this week.

Blessings,
Mandy

Humility 101

Humility 101
Professor - Amanda Smith, PHD (Permanently Humble Disciple)
Student - Jay Smith

It's been a busy time for me lately. I have been working 60+ hours a week, caregiving for Mandy and basically cooking and trying to keep the house in order. I have been slightly lax in that last item, so today I planned to clean the house. Vacuum, mop, dust, bathroom (yuck!) and laundry.

Now, if any of you know Mandy very well, she is OCD when it comes to cleaning her house, and she always kept it clean. If any of you know me, I am the typical "guy" who can walk by dirt for a week and never even notice it. So, when this morning came around, I got up, made Mandy some coffee and a breakfast sandwich for both us. We ate together in the bedroom, then when finished, I got up and complained about having to start cleaning the house.

Need a tree cut down and cleaned up in your yard, I'm your man. Need leaves or needles raked, driveway shoveled (or snowblown) I'm the guy for you. If it involves power tools and makes lots of noise, I am all over it. But, when it comes to cleaning, I have a hard time doing a "deep clean" like Mandy does. I mean, do I really need to move EVERY tchotchke when dusting! There must be over a hundred in our house.

Anyhow, when I sighed and announce that I was going to start cleaning the house, class began. Mandy said that she would give anything to clean today. She said "I miss cleaning." At first I thought she was joking, but I could see it in her eyes, she would rather be cleaning our house than being stuck in a hospital bed in our room. Wow, I felt about 2 inches tall as I started vacuuming the floor. It only took about 2 hours to get everything finished, some of her OCD has rubbed off in the last 23 years folks, so the house wasn't a complete pigsty, c'mon people, I am not an animal!

Then, as I finished cleaning, I took a load of laundry out of the dryer and put it on Mandy's bed and she started folding it for me. The girl actually THANKED me for letting her help. That's like 400 level Humility (for all you college people) and I wanted to tell the professor her teaching material was over my head.

So today, I moved every figurine when I dusted, I scrubbed extra hard when I mopped the floor and I even took my time when cleaning the toilets making sure that I made my professor proud. When all was said and done and I announced that I was finished, the professor took a deep breath and with a smile said "I love the smell of a clean house!" Well, I love when the my professor smiles, so the lesson was heard and I was a better student for it.

Sometimes I forget what it must be like to NOT be able to do the simplest things in life like cleaning your house, but today, that lesson was brought back to my attention and I am blessed to have a humble teacher to remind me of these little things. She has had to give up doing the things she loves and relies on others to help her. There are times when I know she feels guilty that I have to "take care" of her after I have worked all day, but I keep telling her that the time will come when I will wish that I could just take care of her for one more day.

"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time."          1 Peter 5:6.

Jay