8,670

8,670 days ago, Mandy slipped a ring on my finger. Today, I slipped it off for the very first time. It wasn't easy, it was emotional and I needed a little coconut oil to help me out. It has made a lasting impression on my finger, the skin is still smooth and indented even 12 hours later. I have discussed the timing with several friends and family about when to take my ring off. Most gave the same response, "you will know when the time is right." I'm not sure that I would ever know, this ring has been a part of me and has represented my commitment to Mandy for the past 23+ years. My love will never end for her, but my commitment to her ended on May 31st. I was confused on what to do, so, I decided to take the ring off this morning, on Independence Day. Don't read too much into this folks, I just chose this day because I felt it was symbolic in some way that Mandy has entered her eternal rest. She no longer has to be dependent on any other human, she is only dependent on her Savior now. It gave me some comfort to look at it this way and to not just have some random day pop up where I would just take it off.

I laid my ring on Mandy's bedside table, right next to her wedding ring. When I shared this picture with one of Mandy's oldest friends, she said "the rings belong together, just like the two of you did!" That was the perfect. Thank you LeAnn, you will never know how much those words helped me this morning. I knew the longer I kept my ring on, the harder it would be to take it off someday. So, I did what I always do, I looked at it logically. What is the purpose of a wedding ring? To show others that you are married? Sure. To represent the love between a husband a wife? Maybe. I have always looked at my ring as a reminder of my vows to Mandy, "to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part." I hope that I was able to live up to my vows.

So, what do our rings represent now? When I look at them sitting next to each other, they represent a beautiful love story. A love story that ended too soon for both of us, but at the same time it ended in God's perfect timing. These rings represent the good days and the bad days, the mercy and forgiveness that each of us had to give to one another throughout our marriage. Most importantly, when I look at our rings laying next to one another, I see that beautiful day in October, in Flagstaff, AZ, surrounded by friends and family, two young kids saying "I do" to one another, naïve about what the future would hold, not knowing their love story would be cut short. These two kids slipped those rings on each others fingers, starting their life together, not really caring about what the future held, as long as they had each other they would be alright. I was the happiest man alive that day, blessed to be marrying my best friend, the girl that had taken my breath away when I first saw her and would continue to teach me about loving someone more than myself. That's what these two rings represent to me now.

I was amazed to see the lasting impression the ring has made on my finger. But, it is fitting since Mandy has made an even longer lasting impression on my heart and my life. This woman has taught me be to be more compassionate, to have faith in myself, to love God and to have even greater faith in Him, and she has shown me that love is stronger than any other emotion, hands down! I am forever in her debt for the lessons she taught me, for the love she gave me and for the time I was able to spend with her these last 23 years.

It will take time for me to get used to NOT having my wedding ring on, but my role has changed in life and I have to accept that. I have 23 years of memories to remind me of how lucky I was to be "Mandy's Husband", but I also have to continue moving forward. Mandy made me promise not to become a hermit, not to hole up in our house or hide out in the woods, but to go back to living. So, I am doing the best I can to live up to that promise, to get out on occasion, to attend church and bible study, to meet up with friends and colleagues. I miss being able to come home to her beautiful smile and tell her about my day, but I tell her anyways. I tell her when I'm making dinner, or when I go to bed. I tell her when I'm walking the dogs and see a bluebird flitter by and land on a branch near to us. And when I really need to feel her presence, I listen to a very special voicemail that she left me several months ago. I just wish I would have asked her to leave me a thousand more!!!

I also want to thank everyone for all the cards, calls, messages and prayers over the last 5 weeks. They have all been special and it is nice to know so many people are thinking about me and praying for me on a daily basis.

Love, Jay

Brave Wings and Broken Hearts

It was a beautiful sunny day when our "Love Story" began some 24 years ago. Looking back, we were so young but we were in love. Just a year after we were married, Mandy was diagnosed with ovarian cancer. We didn't know that this would be a 23 year struggle that would help refine and sharpen our love for one another. As we struggled to understand the "why" in all of this, Mandy decided to start writing thoughts down and her "With Brave Wings She Flies" blog was born. Her beautiful words have touched many hearts, including mine, but she already had mine in the palm of her hand. Mandy made me promise to continue writing her story, and while I feel completely inadequate, I will uphold my promise to her.

May 31, 10:35 p.m. will be imprinted on my mind forever. An hour before, I had attempted to give Mandy some medicine to help her rest, but her breathing had become very labored and I was unable to wake her enough to safely give it to her. I kissed her on the forehead and like every night for the past 24 years said "I love you!" Without opening her eyes, and through crackling breath, she whispered, barely audible, "I love you too." I was exhausted, so I laid down in our bed that is next to her hospital bed and tried to fall asleep. At 10:20, I shot up and turned on the light. Apparently I had fallen asleep, but something woke me. My first thought was that I didn't hear Mandy breathing. I jumped out of bed and ran to her as she struggled to take a breath every 20-30 seconds or so. Our nurse had warned me earlier that day that as the time came close, she could go as long as one minute in between breaths. I called our nurse and told her it was time and she said she would be right over. I watched Mandy take a labored breath while I stroked her hair and kissed her on the forehead again. I went and woke her mom and step-dad and said it was time to come and say goodbye, not realizing that I had witnessed her final breath just moments before. Mandy had left us for her eternal home. As we stood and shed tears for our loss, all I could think about was her running into the arms of Jesus and giving him the biggest hug of her life, with her family and friends that have passed on before her standing by to welcome her home. I was so happy that her struggle was over. I put each of our puppies on her bed and allowed them to smell and give kisses to mom and to understand that she was gone. We (the humans) each took our time saying our goodbyes and then I started notifying family and friends.

My sister, brother-in-law and nephew came over so that Virgil could fulfill Mandy's request of him to perform a cedaring ceremony over her body. We prayed as Virgil performed the ceremony and I personally felt a calming peace enter the room. When they came to take her body away, I was still feeling this calm about me and when asked if I was doing OK, I just said "that was Mandy's shell that was being taken away not Mandy. Mandy had left a few hours ago and was already enjoying her heavenly body.

I finally went back to bed around 3:30 am and succeeded in getting a little sleep. The last several hours were so surreal and as I started the day, I was catching myself trying to act like it was just another day. But, there was one thing missing, one big thing missing, the woman that I had taken care of for the past year and half was no longer there. I didn't need to get her medicine, or make her breakfast, or get her something cold to drink. I didn't have to do anything for her, she was gone. My only task for the day was to go to the funeral home to finalize some paperwork and that was it. I could leave the house without making sure there was someone there to watch Mandy, I could leave and not have to worry about whether Mandy was ok or not. Afterward, I came home and said goodbye to Mandy's family as they headed back to their homes, and it was just me and pups in the house. The silence hit me like a ton of bricks and it was at that moment that I felt my heart crack. I went to get the envelope that Mandy had left for me, and inside were several journals that she had written for me along with 22 cards that she had penned personal notes in for me to open at times she had designated on the envelope. I gently lifted the envelope titled "Open First." My hands trembled as I read the card and on the inside this is what she wrote:

Jay,

Just reading this card has me undone - much less writing in it knowing exactly what it means. I'm in Heaven now. I'm in the arms of Jesus. I'm finally free of cancer & pain; but I'm apart from you. I know it's only for awhile - we WILL be reunited one day! Please know how much I love & adore you. You've been my rock, my lover, my best friend & confidante for so many years. Thank you for loving me well & being my love. Thank you for giving up your life & what you wanted to do for so many years to take care of me. I love you so much & I know that in Heaven, we will love each other differently, but with more perfect, more true love. I will be waiting for you my heart.

All my love,

Mandy

Please pass the tissues! This girl is amazing and I know that her brave wings carried her home last night. The other thing she asked of me on this first night, was to watch the video "When I'm Gone" by Joey and Rory. Again, pass the tissues!

I don't know what the next few days, weeks or months are going to be like, but I know that she is happy and that makes me happy. I know she is pain free, and that makes me jump for joy. I know she is full of peace, and that will be my comfort in the days to come.

Mandy, my Sweetpea, rest easy and know that my love for you is eternal and that I too anxiously await our reunion in Heaven.

Love,

Jay

 

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

 

Living Well Within Four Walls

I have been on a very long blogging sabbatical, and well - I've missed y'all!

For the past couple of months, I've dealt with severe anemia and excessive lymph fluid build up. The anemia has resolved on its own very well. The lymph fluid took some finesse. My doctor placed me on a diuretic and in the past month I have lost 70 pounds of fluid. That is not a typo...70 pounds! I was miserable and didn't quite realize how much so until the fluid began leaving. My body was so swollen that I could barely move. Each movement was painful and all I could do was sleep. My body was exhausted. I continue taking the diuretic to avoid the fluid returning. My lymph system is totally broken, and without the meds, the fluid would quickly build back up.

It has officially been one year since I was admitted to hospice. It's been an incredible year, filled with so many ups and downs; love and laughter; tears and doubts, fears and testing of faith. We don't know why or how I have made it through this year. My hospice team has said more than once that they are amazed at what my body has been willing to endure.
My energy level remains low. For the most part, I'm confined to bed. Occasionally, under Jay's watchful eyes, I can walk to the living room and sit in the recliner for a few hours. It's a nice distraction and break from the four walls of the bedroom.

My cancer continues to progress - especially the exposed tumor. This tumor seems to grow before our very eyes. It has become very heavy and is placing pressure on numerous areas - especially my sternum and the base of my esophagus. The tumors in my ribs, on my liver and throughout my abdomen continue to grow and cause a great deal of pain. My hospice team is working very hard to place all the puzzle pieces together and manage the pain. It is a daily battle, but they are patient, kind and determined to make me comfortable.

Jay and I often talk about the "why" behind my long time on hospice care. We've discussed it at length with our hospice counselor and pastor as well. There are a few theories.
* My body has been in "fight mode" for so many years that it doesn't know what else to do.
* God still has plans for me. What they are - we have no idea.
* God has given me a gift of staying with my loves much longer than anticipated.

I don't think we will receive answers this side of eternity. I'm sure that God will reveal the big picture in His own time and in His own way.

For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.  Isaiah 55:9

Lately, I've been thinking about what it means to live well within four walls. I have had a lot of time to think, pray, read and study. This, in itself, has been a gift. Jay and I have had some raw and real conversations about what it is like to be a patient and dying as well as what life is like as a care giver. Both roles are often exhausting and lonely. We have each had many years in these roles, however, this is a completely new and unfamiliar season for us. We have talked about what life may look like for him when I'm gone - life choices he will eventually have to make. I'm so thankful that we can openly discuss these things, hard as they may be.

This season has definitely tested everything we know and are. We have had moments of faith shaken and moments of faith restored. We continue to cling to the hem of His robe and search every day for peace. Some days we really have to search, but it is always there.

"bleeder!"

Note: Some contents not suitable for the faint of heart when it comes to blood.

Saturday, June 17th, 2017 was a rough day. It started out like our usual days lately with Mandy resting in bed until about 11:30 or 12:00. I wake her up to take her medicine and make her a fried egg sandwich to start her day. She comes out to the living room and hangs out and watches some t.v. Her dad and step-mom were here, so she was trying to stay awake longer to be able to visit with them. By 2:30 or 3:00 she will normally take a nap until 5:00, and on this particular day we grilled hamburgers and made tater tots, so she was up and able to enjoy dinner. After dinner, Mandy was ready for bed, so she went to bathroom to get ready and next thing I knew she was calling me to help her with a "bleeder."

Let's take a step back in time for a moment. Almost two years ago, the tumor in Mandy's abdomen had grown enough to show up as a golf ball size lump in her abdomen. The doctors at CTCA suggested radiation to see if it would shrink the tumor since chemo was no longer working. We were waiting for the radiologist when the nurse came in and was talking to Mandy about her tumor and said that if the tumor kept growing, it could actually break through the skin. Mandy's eyes got big and she made up her mind right then and there that she would zap that sucker to keep it from doing that! The radiation did not shrink the tumor, but may have "slowed" the growth for awhile, however, about a year after the radiation, the tumor made its debut to the outside world. Ta-da! At first, it was just a small hole, but the hole kept getting larger. Once it reached the size of about a dime, we experienced our first "bleeder." Mandy was in the shower and started yelling for me, as I came in, all I saw was blood everywhere. All over her, all over the shower, it was a scene right out of Psycho! I got a towel over her tumor to control the bleeding and got her dressed and we raced to the ER. I just knew she was going to bleed to death before I could get her there. Once there, it continued to bleed a small stream of blood all through triage. The nurses worked fast and got us back to a room quickly. The doctor came in reading her chart with a puzzled look on his face. Typical doctor, he had never experienced this, so he was excited to take a look. Unfortunately for him, but fortunate for Mandy, the bleeding had finally stopped. It had lasted for over an hour at that point and I was figuring they would need to do a blood transfusion. The ER doc chuckled and said that she didn't really lose that much blood. He said comparatively speaking, this is nothing to what he has seen when it comes to blood loss in the ER. Well, to a Forester, it was a major loss of blood! Little did I know what was to come.

These bleeding episodes continued about every week for several weeks and as with most things cancer related, Mandy and I grew accustomed to it and learned how to handle them on our own for the most part, but still had to go to the ER a few more times when we couldn't get the bleeding to stop on our own. The last time we went, the bleeding lasted 2 hours. It looked like a pin hole in a balloon full of water, except it was a vein in a tumor, full of blood.

Mandy decided to try radiation again last July and August to see if it would help with these "bleeders," and it did. After radiation, Mandy decided to go onto Hospice, and after a couple of months the tumor growth began again and we started to learn the term "fungating tumor." Without going into detail, a fungating tumor is a tumor that has broke through the skin and you actually get to see the tumor exposed. This brought on the "learning how to do wound care" part of being a caregiver so that it would not get infected. Not sure what this says about doctors and nurses, but every time one of them looked at the tumor, and they ALL wanted to look at it, they commented about how "good" it looked. Well, as the tumor continued to grow, veins would come to the surface and then retreat, but since the veins and the surrounding tissue is so fragile, they would sometimes break open and bleed. That's when the term "bleeder" became a regular part of our vocabulary. "Hey honey, we got a bleeder" or "got another bleeder" were words I dreaded to hear. It meant getting Mandy into bed to where I could put a cloth diaper (we discovered this wonderful tool on our own) on it until I could get it to stop bleeding. Then, I would clean the tumor and put a new dressing on it and wrap it up to secure it all. On a real fun night, we would get a bleeder, get it stopped, cleaned up and a new dressing, just to have it start bleeding again. At this point, we were getting so used to blood, that we didn't even blink an eye at it. We just went through the motions and took care of it. That is until Saturday night.

"We have a bleeder" was all I remember Mandy saying. When I walked into the bedroom, there was blood running all over her. She was getting into bed but the cloth diaper she had couldn't contain all the blood. I grabbed some more diapers and our basket of "tumor cleaning supplies" and started to do my normal routine. After we soaked through the first 5 diapers, I started to get a little worried. By diaper 15, I was out of diapers and really getting worried. The tumor had been bleeding for about 20 minutes now. I looked around and grabbed some Depends guards that we use to "pad" the tumor normally. I started putting them on the area of the tumor that was bleeding and watched them soak up blood rapidly. After about 7-8 pads getting soaked, I new I had to do something. Normally the "bleeder" slows down, loses pressure and clots itself, but not tonight. I grabbed some military grade blood stopper cloth, the kind they use on the battlefield to help stop soldiers with bullet wounds from bleeding out, I cut several pieces of it and started putting them at the spot where the blood was coming from. It immediately soaked through two pieces, so I took the top one off and put a third one on. After about 5 minutes, we lifted our last diaper and thanked God that the bleeding was finally slowing down. Another 5 minutes and the bleeding had stopped. An hour and fifteen minutes had gone by and this time I knew Mandy had lost a lot of blood. After about 30 minutes, we stood her up to try to get her blood soaked pajamas off and she almost passed out. We laid her back down, called the Hospice nurse and waited. Her blood pressure was 110/49 with a resting hear rate of 115. Her body was trying to compensate for the blood loss. The nurse estimated she lost at least a pint of blood if not a little more. I vote for the "a little more!"

Mandy was white as a ghost and started having more pain around the tumor following the "bleeder." Between the pain and the anxiety that goes along with it, she is taking a lot of morphine and Ativan. It is now 4 days later, and she has yet to leave the bedroom. I have to help her up to get to the bathroom (about 5' away from her bed) and it takes everything she has to get back into bed. When I wake her up to take her meds, she can hardly keep her eyes open and when she tries to ask me a question about my day, more often than not, she falls back asleep while I am answering her. Now, I know I'm not the most interesting man in the world, but it starts to give a guy a complex. Seriously, this one scared us both. Enough so, that we have discussed how another episode like this could be her last.

Why tell you all of this? Well, for one thing, Mandy wanted to keep everyone updated so that as you say your prayers on our behalf, you know specifically what to pray for. And secondly, I wanted to let people know that whatever situation you are in, God is faithful to get you through it. I told Mandy afterwards that I had to go into nurse/patient mode during all of that or I would not have been able to handle it. If I had looked at her as my beautiful wife, literally bleeding to death, I don't think I could have figured out a way to stop the bleeding. About 30 minutes afterwards, while I was waiting on the nurse to show up, the adrenaline started going away and I started shaking. I thanked God for getting me through this and for helping me find a way to stop the bleeding. I didn't pray to God while it was happening, I didn't call on His name, but I didn't have to. He was right there with me, keeping me calm and clear minded. It is a great comfort knowing that even when I am not focused on God, He is focused on me!

Please keep Mandy in your prayers. Jay.

Conversations.......

It's been awhile since we posted anything and we wanted to give a quick update and to share some of our conversations.

Mandy's cancer has continued to show progression and is causing her to sleep as much as 18 hours in a day. We have had several visitors the last few weeks and Mandy has enjoyed the visits and feels bad that she has to sleep so much. Her tumor is still growing and pushing upward into her diaphragm causing her to get short of breath anytime she has to get out of bed or out of her chair. Her tumor was bleeding a lot causing her to become anemic which caused a lot of concern from our nurse. However, the last couple of weeks, the tumor has stopped bleeding heavily which has allowed Mandy to get her iron levels back up and to feel a little better.

Over the last 20 years of fighting cancer, Mandy and I have had countless conversations about life and more recently about death, and we would like to share some of them with you, so here goes.....

Miracles - Early on this was a regular topic of conversation, between Mandy and I and the countless number of people praying for her.  Funny word "miracle", does it refer to someone being completely healed from a disease, or does someone surviving 4 times the expected lifespan after diagnosis count? Our conversation lately has revolved around the idea of being healed completely and what that would be like. On the one hand, Mandy and I could continue our love story and experience more things together. But in Mandy's words, "I'm not sure if I would want to have to experience this "dying" thing again." We discussed how both of us have focused less on a miracle and more on Mandy's hope of heaven and having no more pain, and more importantly, being in the presence of the Almighty. Have we given up on God? On the contrary, we are putting our complete trust in His promise. I do not want to experience my wife's death, but seeing her suffer in pain and struggle to even get out of bed, I find comfort in the promise of heaven.

Speaking of Heaven - We talk a lot about heaven! What will it will be like, will Mandy get her own baby sloth when she gets there? Looking forward to seeing loved ones that are there, and all those people that she will meet for the first time. What will it look like? How wonderful it will be to no longer have any pain whatsoever!!!!!! There are more questions than answers, but the hope of heaven is enough.

Wanting to stay, wanting to go - Mandy has a strong will to live, maybe the understatement of the year! Even in her pain and struggle, I can see it in her eyes. I would have given up a long time ago, but she keeps fighting. But, within that fight, I see a longing for it all to end. For the peace that comes with heaven. She struggles with leaving me alone, with her parents having to deal with losing a child, with not being able to see season 11 of the Big Bang Theory! I struggle with this also. I want to grow old together. I think about all the things I will miss about her being here and all the laughs we could have. Then I watch her face grimace as her tumor shoots pain throughout her body. I see her struggle to walk due to the lymphedema and how she gasps for breathe just from walking fifteen feet and I think how selfish it is for me to want her to be here longer. She will be in a much better place once she leaves this world, and I will find peace in that.

Death/Dying - Wow, I never thought I would spend as much time talking about this at our age, but here we are and we talk about it a lot. What will dying be like? We have read several hospice books trying to learn what dying will be like, but only determined that each person dies in their own special way. I have concluded that I can either accept it and be there to help Mandy or I can deny it and miss out in the last moments I will get with her this side of heaven. I choose to be there for her! Mandy has said on numerous occasions that "dying is hard work!" For the last 6 months, we have been given several timelines for her life expectancy, from 3-4 months to 1-2 weeks to even "just a few days" at one point. It was explained that her health would most likely stay at a certain level and then go down quickly. Well, Mandy has done just the opposite. She has had to endure a slowly growing tumor, fluid build-up in her legs and abdomen, the struggle with breathing and having to give up doing just the smallest of tasks. She spends most of her time sleeping and wonders at times "what am I even doing here?"

Life after Mandy - This is one of the tougher conversations for me. Mandy has made me promise not to become a hermit. I have to keep interacting with people, and not just the people behind the counter at Jimmy Johns! I can't sit around all day watching sports and eating wings in the dark, she said. We have two fur babies that have to be taken care of after all. I have told her that one of my concerns is that I will become a workaholic to keep my mind busy. Frankly, I'm not sure how I will react or how I will "handle" myself, but I do know it will be difficult and that I will miss her so much. Beyond that, I have let Mandy know that I will be OK, I will think of her often and probably cry every time I see a bluebird. I see a lot of hiking in my future, I can be in my happy place and do something that Mandy and I loved to do together, explore new places.

Appreciation - I told Mandy the other day that I didn't appreciate her enough in all the things she did for me throughout our marriage. She worked a full-time job, planned and cooked almost all our meals, cleaned the house and basically took care of me. Now it's my turn to do the same for her and I have realized how hard it is! It is a privilege to take care of Mandy and even though there are times when I am exhausted and just want to sit down and relax, I know that one day I will wish for one more day of getting her medicine, or washing her hair, or getting her dressed. I would challenge every husband out there to observe their wives and see all that they do for you, and then do those things for her for one month. I guarantee that at the end of that month, you will have a deeper love for your wife and appreciate all that she does for you and hopefully will continue to help out going forward.

I am glad that Mandy and I have felt comfortable discussing some very uncomfortable topics, but we both are determined to "experience" this part of our lives together. Trust me, there have been times when I would like to ignore that my wife is dying and try to act like nothing is happening, but if I did, I would be missing out on precious time that I will never get back.

We are so thankful for all your thoughts and prayers on our behalf and thanks for listening in on our conversations.......

Love you all......Jay

Roller Coaster

An Enigma...The Exception to Every Rule...
These are what Jay and my nurse Stacy have recently called me.

In August, I was given six months. In September, that changed to three months. We celebrated Thanksgiving and Christmas, certain I wouldn't see much of the new year. In March, I was given one month. We've surpassed the one month timeline. We have all been subjected to an emotional roller coaster and my hospice team is rather befuddled right now.
I am grateful God has allowed me more time than we anticipated. I'm so blessed to be spending time with precious friends and my family. We've had "real" talks that included many tears and much laughter.  I've seen several beautiful snow storms and crossed many items off my short bucket list.

Because my time is limited, I have worked on being more open and real with people. There are many parts of this journey that have flat-out sucked. Normally, I would never say that. I would just smile through it and say it's okay. I've been able to express to God and others that I don't really think this is all okay. It is not okay to make my husband a young widower...it is not okay to make my parents out-live their daughter...it is not okay that we have all been through an emotional wringer more times than we can count. It is not okay - IT SUCKS!

You know what? God gets it. He really does. This was not His plan. His plan was paradise - Eden. His plan was to walk among His creation, talking with them and enjoying a beautiful close relationship with them. Well - we humans messed it up but that didn't stop Him from loving us deeply. The circumstances we face may be horrible, life-alteringly sad and devastating, but that shouldn't change our love for God.

God loves us so greatly that He couldn't bear the thought of being separated from us. Imagine that! The same God who placed the planets in the universe and spoke our world into being, loves us so much, He wants to be with us always.
There's just one problem - sin. We sin-we're all sinners. It's a sad fact. It's also a fact that God cannot live in the presence of sin - hence the eviction of Adam and Eve from Eden.
God had only one choice - an agonizing choice, but the ONLY way you and I could be reunited with Him and live in His presence now and forever in heaven. He needed a perfect, spotless sacrificial lamb to take the place of our disgusting sin. The only one capable of this task - His one and only Son, Jesus. So God sent Jesus here, knowing full well what He was sending Him to do.

Throughout His entire life, Jesus showed us love, light and life - perfectly and without a single sin.
Jesus also knew the reason His Father sent Him here - to face down a punishment that was meant for me and you.
After hours of agonizing prayer, begging and pleading for God to find another way - to find another answer to our sin problem, He knew that He must be faithful to His Father's will. Instead of fleeing from the fear of this, He laid down on that cross willingly. As he hung there, every sin of every person then, now and to come, was placed on Him. Jesus - the perfect lamb of God was now being held in place with spikes and all of our foul, repulsive and rotten sin was being cast on Him. It became too much for the Father to witness.

When Jesus died and rose again - our salvation was set securely. Through His supreme act of faith, obedience and love, when we accept His precious gift of salvation, He removes our sins from us. Now, when God sees us - He sees the blood of His beautiful Son washing us clean. We can now be pure and clean in the presence of God.

Don't allow your circumstances to dictate how you see and feel about God. Allow your faith and love for God to dictate how you handle your circumstances.

Apparently, my timeline is a complete mystery. I asked a friend why God wasn't ready for me yet. She replied "you may not be ready for heaven yet." There may be more refining God has planned for me, or there are plans unfinished that He needs me to accomplish. Either way, the One who knows the exact number  of my days and set them into motion before I was born, will see to it that I have everything I need here until He calls me Home to Paradise.

Blessings,
Mandy

The Blame Game

How often, when something bad happens, do you quickly look for someone or something to blame? Yeah me too! It almost becomes second nature. If we can find someone, or something, else to blame for our misfortune, it makes it much easier to accept. According to Google, which knows everything, it is called "blame culture."

For the last 21 years or so,  cancer has been THE "thorn" in Mandy and my  life. A couple of nights ago, after helping Mandy to bed, I laid down in our bed which is right next to her hospital bed, and asked her if she has ever blamed God for any of this. Now, I had asked myself this same question earlier that day and realized that I had come up with plenty of ideas of where to place blame for our situation over the past 21 years. First I thought about genetics.......nope, ovarian cancer does not run in her family and she tested negative for the BRCA 1 and BRCA 2 genes, so that's not it. Hmmmm, Mandy was born in northern Arizona, which was affected by the wind drift of the nuclear testing that was done in Nevada years ago. They call the people affected, the Downwinders, and the government pays $50,000 to anyone who develops certain types of cancer and lived for two years in certain counties in Arizona, Nevada and Utah from 1951 to 1962. Strike two, Mandy wasn't born until 1973, so that can't be it. In today's climate, it would be perfect to blame the government for all of this and Trump hasn't tweeted anything about ovarian cancer, YET. What about talcum powder???? Just recently a woman's family was awarded millions of dollars for her untimely death due to ovarian cancer from years of use of talcum powder. Mandy used talcum powder. I might actually have to look into this one! What about Big pharma, they are an easy target to blame. There is a large portion of the population that believes big pharma can cure cancer, however, they make so much money in treating cancer that it would be "bad business" to actually cure it! For example, one of Mandy's chemo drugs cost $80,000 per treatment! Maybe we can blame the family doctor who failed to properly diagnose Mandy which delayed her initial treatment by months as she attempted to treat Mandy for a multitude of "other" conditions. What about blaming the cancer itself? But, that would be like blaming the bed for hurting my big toe when I kicked it in the dark the other night, as if the bed did that on purpose.

No, not one of those brings satisfaction to our situation. However, as Mandy and I separately pondered over our situation, we both concluded that we had never blamed God for this. We have both had some serious conversations with God asking "why?" But not once have we blamed Him for all of this. On the contrary, God has been the One who has kept us together and helped us get through all of this. He knew before Mandy and I even met that we would have a love that would be strong enough to endure all of this. Just think about that for a second, God, the hopeless romantic, knew that with His guidance, we could write a love story worthy of a blog!

As we laid there discussing this, I had the strongest feeling that I needed to do something. I needed to FORGIVE cancer. So, for the past 7,574 days that cancer has been an uninvited guest in our house, for all the times I have cursed it, I want to, no I need to say "Cancer......I forgive you!"

I don't want to spend anymore of our precious time or energy by hating cancer or figuring out who or what to blame for this disease that ultimately will end my beautiful wife's time here on earth. I would rather celebrate our life together and all the fun and love that we have been able to share with each other and with our tribe! So, in the spirit of Jesus' teaching, I will forgive 1,082 x 7, because that is how I can move forward.

One of the things Mandy has enjoyed most is cooking and baking. It was one of my favorite things too! If you were lucky enough to have partaken of a meal or dessert prepared by Mandy, then you know what I am talking about. Yesterday Mandy presented me with a handwritten cookbook of all of our favorite recipes and a few new ones for me to try. I told her that she probably should have included some take-out menus from some of our favorite eateries in Flagstaff! She continues to take care of me and wants me to be able to fend for myself, so she patiently sat next to me guiding me through preparing one of our favorite meals that she adapted from Pioneer Woman called "Marlboro Man" sandwiches. Mandy grew up learning how to cook from her French-Cajun grandmother who, whenever we visited in Louisiana, always made sure we left 10 pounds heavier. Mandy was always happiest creating a masterpiece in the kitchen. I am glad to report that my cooking was edible and we enjoyed the sandwiches immensely.

Just recently, Mandy created what will likely be her last bucket list, and this one consists of all the foods she wants to eat before she goes! I love this woman! The list has 13 foods/restaurants on it, of which we have checked off one so far.

I know I can't hold a candle to the hurricane that is Mandy's writings, but this is something that I just had to get off of my chest. Thank you for indulging me and for your continued prayers for Mandy and myself.

Jay

This World is Not My Home....Passing the Blog Baton

When I read Hebrews 9:27 and see that it is appointed for man to die...I think..I can comprehend that. The truth is, that it feels so far into the future and it is so non-specific, it is easy to acknowledge and ignore.

When my Doctor and Nurse both agree they feel I have a certain number of days remaining, it becomes much more specific, yet no easier to comprehend. I would think that being this close, I would be able to wrap my head around it, but I cannot.

We live our lives "knowing" way in the back of our minds, that, unless Jesus returns first, we will all die. However, until you are given an actual timeline, it rarely feels real. Heck, even when you are given the timeline, it still doesn't feel quite real. 
I have no way of truly grasping this concept. One moment I think I have peace and understanding and in the blink of an eye, that all shatters and I am left staring down at the broken shards, wondering what to do.

What I truly want, as I see this life and realm fading, is for the heavenly realms to open and reveal themselves - giving me a glimpse of what awaits me. I can only imagine what that would be like, but, faith doesn't ask me to believe in what I see, faith asks me to believe in the unseen promises.

Jay and I discussed pain levels a few days ago while talking about pain medications. We realized that I have not had a pain free day in over 20 years. I cannot even fathom what no pain feels like - it is truly all I know.

I thought about the dramatic difference I would feel once I reach heaven - no pain, no sorrow, no fear - all GONE, thanks to JESUS!

I have decided to start thanking and praising Him now for the mercies He will give me when I meet Him.  20 years of pain traded for an eternity of perfection - the least I can do is be thankful and praise Him.

This will most likely be my last blog. My swollen body is beginning to ebb. I find myself sleeping more and more. I have a hard time focusing on even small tasks. Even writing this, I have dozed off a couple of times. 

I want to thank each of you for reading our story and for responding with such love and compassion. Jay and I are forever grateful for each of you.

Jay has agreed to take over the blog for me. He is an incredibly gifted writer and will faithfully keep you all posted as our story and journey continue to unfold.

May God bless and keep each one of you in His strong arms of love always.

Blessings,
Mandy

Walking Me Home

Yesterday we met with Dr. Monroy - the Hospice Doctor. She's extremely kind and calm. She thoroughly explains things. We made the decision a few weeks ago, to just see the Hospice Doctor instead of having a Palliative Care Doctor and a Hospice Doctor. Too many docs and things were getting a bit muddled. 

                                                            Nurse Stacy

Yesterday, we discussed new symptoms and possible treatments. I'm experiencing pretty severe lymphedema in my legs and feet. We tried lasix a few weeks ago, however, my potassium bottomed out and caused some serious side effects. We may be able to try a more mild diuretic in the future. We will also try a newer type of banding than the compression socks. We are praying something works - this stuff is miserable. I weighed yesterday and in two weeks, I've gained 12 pounds of fluid. If the banding or diuretics do not work, the fluid will become too much for the tissues to bear, and will begin to weep through the pores in my legs.  Yep - it is gross....Cancer is gross!!

                                        Jay & Lisa helping with my compression socks

There are a couple of possible reasons for the lymphedema. It could be due to the tumor burden in my abdomen that has basically "broken" my lymph system. It could also be a possible blood clot in my pelvis. There are no treatment options available for either. If it is a blood clot, the treatment would be blood thinners, however, the large abdominal tumor has begun some bleeding episodes again, and we cannot risk the use of blood thinners.

                                                                My Heart

We have had some wonderful visits the past couple of months. Mark and Carolyne came out for a couple of days then spent some time in Sedona. They were set to come back to stay with us a few days, however, Carolyne caught a nasty cold and the decision was made for them to head back home rather than risk infecting me.

                                                            Steiners' Visit
Jay's family has made several day trips up to see us and Jay's mom spent a few days with us. It was a blessing having her here when my potassium levels bottomed out - having a nurse on hand 24/7 was great. 
My Mom came up and spent a few days here. She gave me foot rubs, and we spent time laughing and crying and telling old stories.

                                                                  Foot Rubs
Ginger was here last week - as always, we spent much time crafting and just enjoyed being together.

                                                     Laughing with Ginger

My Dad, Charla and Somer will be here next week. Somer recently got engaged so we cannot wait to browse through bridal magazines and Pinterest!

All the visits bring so much love and joy to our lives. We enjoy the time we are able to spend together while I am awake and coherent and able to enjoy their company.

My Doctor explained to us there are a few ways my disease may progress:
a) symptoms could slowly increase and my health could steadily and slowly decrease. This means more suffering for me, however, it would be much easier for my family.
b) quick decline: this would be easier for me, yet harder for my family. 
We are hoping for a combination: slow enough to gather my tribe around me and quick at the end. That's not too much to ask.
c) If it is a blood clot, the decline could be instantaneous. My Doctor told Jay that should it happen that way, to remember that although it will be more difficult for him, it is one of the easiest ways for dying to happen.

                                                          Out for a Stroll

With the lymphedema, it is now very difficult to walk and the fatigue is steadily increasing. I nap often during the day and find myself dozing off and not being able to focus on tasks because I'm too sleepy.

                                                            Blog Writing

We have now reached a noticeable point where my tribe is walking me home. Every day as I edge closer to the door of heaven, my tribe walks near to my side. They love me with foot rubs, crafting time, sweet conversations, laughter, tears and grace. 
These people have never wavered in their love, compassion and willingness to do whatever is needed to gently ease our burdens. Our lives would not be the same without them.

Blessings,

Mandy

Joey+Rory - In The Garden (Live)

HOPE

Since this is my 3rd dance with the "C" word, the closing of my life isn't a completely foreign concept to me. With each new recurrence, surgery and treatment plan, death was always a real possibility.

So - with 20+ years of staring down the barrel of death, why am I so surprised by my feelings of shock, anger and grief? One word - HOPE.

Each new attempt at outsmarting the cancer cells, each new infusion of poison designed to eradicate, each meeting with the best oncologists in the country afforded us a new measure of Hope.

Hope kept death at bay; Hope allowed us to view new scars as a warrior's badge of courage; Hope allowed us to accept each new toxic cocktail being pumped into my body as an eventual life source.

Hope was able to mask the fear that gripped our hearts and Hope allowed us to dream of a sweet future where we grow old together and cancer is just an unpleasant, distant memory.

Now - that Hope is gone. The cancer cells proved to be sneakier and smarter than the treatments. No amount of poison, surgery or PhD's hanging on an office wall were able to outwit them.

Now, we have a new Hope. A different and better Hope. Instead of physical healing, our Hope is for emotional and spiritual healing. Healing from the grief, anger and sadness that have become part of our days. Hope that God will show us mercy through suffering. Hope that good will come of our story. Hope that our lives and our home will be sheltered under His peaceful wing. Hope that, despite our circumstances, His presence and golden glow can be felt by all who enter our lives.

Hope that when Jesus says my time here is completed, that He will greet me with arms wide open and welcome me into an eternity of walking with Him through the gardens of paradise.

Hope that when I'm gone, His sweet, peaceful presence will cover my tribe in love. Hope that they will have happy memories to focus on and that laughter will quickly replace sorrow.


Blessings,
Mandy

HAPPY BIRTHDAY MY HEART

I have been honored to know and love this remarkable man for 22+ of his 46 years. Here are a few things you should know about Jay:

                                              Rocky Mountain National Park

My boy is wicked smart! He loves to read and is constantly absorbing and learning new things. He adores God's word and is especially fascinated with the Jewish life and nature of Jesus.

When Jay loves someone - it is forever and always. He loves deeply and completely. He is fiercely protective of those he loves.

Jay is a naturally gifted athlete. He picks up sports ridiculously easy (so easy it borders on annoying for those of us not athletically gifted). He loves baseball, basketball, skiing and swimming. When not playing sports, he loves to watch sports...all sports. He has an amazing knowledge of most sport - I've told him he should have been a sports announcer.

Jay is happiest when outdoors. From the time he was a toddler, he just wanted to spend his days outside exploring. Camping and hiking are his two favorite ways to spend time. The man is part mountain goat - he can out-walk and out-hike most people half his age.

                                                         Smoky Mountains

Jay loves music - all types. I have never seen a more eclectic compilation on I Tunes before. Music speaks to him in a way few other things can. It calms him, centers him and focuses him. He can remember song lyrics from the most random and obscure songs. I've always said, if I want him to remember something important, I need to sing it to him.

Jay is an "old soul". He was born old. He has always been mature and reasonable. He didn't go through the ridiculous, rebellious teen issues most of us did. While the rest of us were acting like morons, Jay was working and being a responsible person. He is level-headed and extremely diplomatic. The perfect compliment to my sarcastic, say-anything personality.

                                                                   Maui

Jay is an amazing caregiver. He can give shots, do dressing changes, manage wound care. He can walk at a sloth-like pace around nurses stations for hours on end. He can sleep on those hideous hospital room sofas and reach over to silence the IV alarm without opening his eyes. He knows his way around hospitals better than most of the employees. He can shave a Mohawk into your hair before it all falls out. He is a gate-keeper, knowing when to allow visitors and when I need rest. He is a chef, a housekeeper and a grocery shopper. He is a pharmacist and apothecary.

If I had all the time in the world, I couldn't tell you all the amazing things about Jay. The most important of all is his love. His love for his Savior, his love for his family and friends. His love for his wife that has never wavered. 

My Heart - I wish for you a day filled with only goodness, laughter and love.

All my Love,

Mandy