Of Hardships and Happiness

As per usual I know it has been a long time since I have posted on this blog. In fact, close to two years I believe, so yes for those who have read this, I am still alive and kicking.

These last two years have been very eventful, difficult, and joyous. Just to give you a brief recap and catch you up to speed, here are some of the things that went down since we last talked.

I graduated from the University of Utah with a Bachelor of Science in Nursing, passed the NCLEX (nursing board exam to officially become a nurse), got accepted to several prestigious Nurse Graduate programs, and had a bugger of a time deciding which one to attend. In the end, I decided. (with the help of the Lord and my loved ones) I accepted an offer to attend the University of Tennessee, in particular, their Graduate Medical campus located in Memphis Tennessee.  

I also visited one of my ancestral homelands with my family, yes I know I don’t look it, but in fact, I am some small fraction native Hawaiian. Put that with all my other ancestry and you get one fine-looking dude (I am joking if you couldn’t tell, not about the Hawaiian part of course)

 

(Check out the headphones over the hood, the epitome of sexy right there)

All jokes aside, I look like this whenever I am not in scrubs or my white coat. Usually comfy, with either a baseball hat, headphones, or both on.

 

I am currently working as a nurse on an Acute Hematology and Oncology unit (Blood and Cancer, so usually we have bone marrow and stem cell transplant patients).

Memphis is an interesting city, to say the least. Although I have yet to love it like Utah or Cleveland, I am hoping it will grow on me at least a little. Granted once my schooling is done, I will be getting the heck out of dodge.

Alrighty a whole lot of other things have happened since I last posted, but that update will do for now. So on to what brings me to posting.

 If you can believe it, three years ago today I received my life-saving transplant. Three years of life with a shared body that I have been beyond blessed with.

To think a family has had to live three years without their baby boy is heartbreaking. This sets up the background for the thoughts that are inundated in my mind currently. Happiness and Hardships. These two things are so insufferably connected it still surprises each of us. Our hardships can bring us some of our happiest moments. I can’t quite explain how exactly, but they do. If we use our hardships to propel us forward, whether that is through changing ourselves, running after our dreams, or learning to make the best of the incredible lives we are given (even and maybe, especially when they can be brutal), it can lead to amazing happiness.

For example, my recent adventures here in Memphis. I honestly can say that upon arrival and even a little still I did not like this city at all. I found it not at all what I had hoped. It was so unlike Cleveland which I fell in love with very quickly. Memphis has been hard on me, incredibly so in fact. Yet as time goes on I realize that this city, just like Cleveland may very well be a life-changing place for me. I don’t know in what ways, but all I can do is try to make the best of the hardships and find the happiness.

As I reflect on my transplant every day and even more so at this time of year I remember fond memories and excruciating ones. Perhaps one more example to help me better express my thoughts and feelings. I remember not long after my transplant as I was recovering in the hospital, the girl I was dating at the time would often come spend copious amount of time with me in the hospital. On this particular day, I was having a very hard time. Anyways, I remember her walking in and chatting with my family for a second and then sitting down in the chair next to my bed, smiling at me, and grabbing my hand. It was a simple gesture, truthfully, something most couples do almost absentmindedly. Yet as she sat there and just held my hand while talking with my parents it touched my very soul. I felt like I was barely hanging on, failing at every turn, yet a simple gesture by someone I loved managed to give me just enough strength and happiness in a hard moment to push through.

Now I am not saying that you have to have hardships to be happy. Or that every hardship will always bring immense happiness. Rather if we let it, and we use them to our advantage our hardships CAN bring happiness. It is still a choice, we still have to choose to be happy. Sometimes that choice is as easy as breathing, other times it is as impossible as sprouting wings and taking flight. Regardless, let us make it easier for all those around us to choose happiness, even and especially in hardships.

I could truthfully talk for way too long about this and really anything else I feel passionate about. Well, if you get to know me well enough, I can talk about anything for way too long, so to avoid that I will wrap up. (what can I say, I love the sound of my own voice).

Three years down and hopefully many more to come. Yet if this is my last year, know that I have already been blessed with more years than I deserved, and I cannot tell you enough how much I owe it all to so many of you. Keep living, keep chasing your dreams, make bucket lists, and do those “special occasion” type things now, for today can be a special occasion, it’s all about how you look at it.  

 

Keep it real my peoples, until next time.

My First New Birthday

 It has truly been forever since I last wrote in this blog… And I regret that, but no better time than the present to remedy faults and regrets. Plus, I have let my mom make the one year since transplant social media post, and I felt left out. So here are just a small selection of my thoughts in regards to my one year mark, or as we call it “My First New Birthday”. (don't let the title fool you, I still celebrate the day of my actual birth as well).

              I’ll just jump straight in, as many would expect this is a happy and blessed occasion for my family. For me, although this is so very true, it comes with a lot of mixed emotions. Although this last year only accounts for roughly 3.5 percent of my total life here on this earth, it has made all the difference, and truthfully so has every year. Although that is besides the point. The last year has been filled with some of the sweetest moments, and some of the most devastating I have ever come to experience. I have watched friends get sick, grow older, pass on, and accomplish major life goals. I have seen my family grow, and fight for some of the things that matter most. I have talked with tear filled eyes to people who have lost so much, and I have myself cried in the night for relief. With these I have also laughed harder than I ever thought possible, smiled at the most seemingly insignificant things, seen the beauty of life in all its majesty, learned to love more purely, and perhaps stand still and enjoy the journey no matter where on the path I found myself.

              An emotion some people may not realize comes with turning one year post transplant is sorrow, or perhaps at times even guilt. Now I know many of you may not get it, and I do not entirely expect you to, but that doesn’t make those feelings and thoughts any less real to me. Yes, are some of them probably misplaced, I’m sure, but regardless they exist and are a part of life. As I have been deep in thought the last few days it is hard at times to come to terms with some things… One of which is that my families prayers were answered when perhaps the fervent prayers of another family were not. It is weird to think I have accumulated another debt that I cannot pay back, at least not in this life. This one to a young man whom I had never before met, indeed a/my perfect stranger. When we meet with social workers and psychologists as transplant patients, they tell us we can experience a form of "survivors guilt" for lack of a better term. Yes it's true, our donors would have passed whether we needed transplant or not, but for some reason, some of us still feel linked to the tragic events. I guess because of the selfless act that my donor and his family made in one of their hardest moments, not knowing who it would bless, but doing it anyways. Their act of service will always be a reminder to me that life is fragile, and even when we feel we might break, we can still be the world altering difference in the lives of many people. Every major life event that I am blessed enough to have will be due to them, and especially to my donor. Hopefully one day, I can share stories with my own children of a boy and his family who made a hard choice that would forever shape the lives and legacies of many. I owe him everything, and I hope when I get to see him one day, he will be proud of the life I made with his gift. 

    Perhaps a few more of the things I have learned in this last year, and a lot of them were things I already knew, but had to relearn and improve upon.

- I learned to love more purely and deeply

- I learned to live fiercely, in whatever small or seemingly insignificant ways I could.

- I have learned what it feels like to be beaten, indeed beaten so badly you fear you will never be the same

- I learned how to cherish the small victories, and at times even the defeats

- I have learned what it feels like to lose, despite of all your earnest efforts

- I learned that life isn't always fair, but that doesn't have to take away from its beauty

- I have learned to laugh as often as possible, laughter can truly be the best medicine

- I have learned that life, even with its heartbreaks is truly a beautiful thing

- I learned that Gods timing is perfect, but can still be a hard pill to swallow

- I have learned to be still and enjoy the little things

- I learned that trials can be blessings if we let them, and perhaps even some of our greatest blessings

- I learned that bananas and apple pie can be quite addicting (not together of course)

- I have learned that physical affection is amazing, but not the source or anchor of love

- I learned what it is to cling to nothing but a dream, or even just the hope of a dream

- I learned that steroids make me fat (much to my irritation)

- I learned that hard work is always worth while, even if it doesn't feel like it pays off

- I learned that being broken doesn't mean you cannot be loved

- I have learned that weaknesses can be overcome, and sometimes that to do so is a life long endeavor

- I learned what family truly means

- I learned that strangers are often the kindest people you will ever encounter

- I learned to love the rain, and to just stand in it knowing that everything will be okay

- I have learned how to make friends, and have made friends that will last through the eternities

- I learned to pick myself up even if no one else would help

- I learned that even though we are so small and insignificant, we can truly alter the course of a life

- I have learned to smile, even though it seemed I had nothing to smile about

Truthfully I have learned so many things, that it would take far too long to write them all out, and even when I thought I had finished, there would still be more to write. 

I guess to wrap up I just want to say how grateful I am for this last year, and for every precious year I have been blessed to have. I hope to have many more, continually growing and learning along the way. If you are struggling or having a rough moment, stop, take a break, even for just five seconds, this life is to be enjoyed. I would do well to take this advice myself. Thank you to everyone who has seen me through this last year, no matter how small you thought your role was, it made a difference in my life. One day I will get to hug all of you and probably through tears thank you for everything you have done, not only for me, but for all of those around you. Here is to another year filled with endless adventures and experiences. Life is hard, but oh so joyful, lets try not to forget that, and if we do, to quickly right ourselves and keep pushing forward. I love you all, even if it is just the tiniest fraction. Thanks for reading this, and I wish you the best that life has to offer you. 

Home To Me

Hello, it has been a bit hasn’t it...

As I almost always say, it has been far too long since I have posted. As y’all know it has been a crazy ride. I need to be better at writing in the Blog, so hopefully I can stick to it and be more consistent. I am hoping to keep this post relatively short, and by so doing post more frequently. This so I can keep their lengths more manageable and the posts themselves more enjoyable to read. Anyways to start off I will give a brief update. My health is doing pretty good, this last week I have had some mildly concerning symptoms. I also got a scope as to rule out rejection, and just to play it safe before we leave for Utah. Otherwise I still deal with side affects from the meds as well as other recovery pains and symptoms. Overall though I would say that I am doing well and trying my best to keep improving in all aspects of my life. It is crazy to think that I am only eight months post transplant, and only just over a month without my ostomy. I was able to take a shower for the first time yesterday without having to cover any part of my body with a shower guard or plastic of any variety. I tell you what, it felt so stinking good, it’s funny the things we take for granted. It makes one appreciate the little things so much more. I would say that that is the general overview of things as of late. Since I didn’t really post during the actual transplant and the immediate recovery I will probably refer back to it often in this and other posts. Not to mention everything else. 

    This post in particular is quite bittersweet... I am writing this post just hours before I will be moving back to Utah, at least for a time. It is an amazing blessing that my health has improved enough for me to even be able to return to Utah. I cannot even begin to express how fortunate I am to have received a life saving transplant during this time, and in such an amazing place. Ohio has and will always have a special place in my heart. Although the last two and a half years have been extremely difficult, they have also been amazingly beautiful. Cleveland has truly become home to me... Leaving this amazing city feels like I am leaving home. I have tried to really live in such a way that wherever I am, indeed wherever I am living is home to me. I will miss this place and the people here more than I can explain with my simple words. Cleveland and all the people I have met here have truly changed my life for the better in more ways than even I realize. Sadly I have not been able to say goodbye to nearly enough people as I would like. With Covid, my immunosuppressed state, and time constraints I have not been able to say goodbye to many of the people I wished to. Fortunately I will be coming back to Cleveland periodically for the rest of my life. The Clinic will oversee my health for the remainder of my life, with that being the case I will return here at varying intervals for check ups and routine tests. With all of this it will give me the perfect opportunity to stay in touch with many of the amazing people I have grown to love throughout my time here. A side note before I continue on. I would include pictures of everyone if I could, but it would make this post way too long and it would easily have hundreds if not thousands of pictures. So I hope no one is offended that they are not mentioned in this post. I am also a massive softy and had to choke back many tears as I said goodbye to these and many other people.

This is a picture of my mom and I with Anita. She is one of the Nurse Coordinators with the Transplant team. She has changed my life in more ways than I can explain. She is like another mother to me, and I will never be able to thank her enough.

  

This is Tarik and Ernest, some of the greatest guys I have come to know here in Cleveland. They are such great examples of friendship and kindness. Their laughter and positivity is simply contagious.

    As I have been packing and preparing to leave I have had a lot of mixed emotions. It is hard to explain, but there is a large part of me that truly does not want to leave Cleveland. Now there are many reasons behind this, but as stated earlier one of the biggest reasons would have to be the amazing people I have met here. There is a quote from a movie that goes something like “A place is only as good as the people who live there...” I have come to know how very true that statement can be. Between the transplant team, members of the church, friends, and strangers, I have come to know many spectacular people. I will be indebted to them for the rest of my life and into the eternities. As I go to leave another home, I can’t help but think of the day I will get to spend time and truly thank all of these amazing people. Even then I will never be able to repay them the way they deserve. It makes me think of when my time is finally up on this earth; how great the reunions will be as we are greeted by countless concourses of people, who are just waiting to meet us or see us again. So although I have had to say goodbye to so many people, it is comforting to know that it is only for a short season, and that either in this life or the next I will get to see them all again. There is one person in particular I cannot wait to meet once this mortal journey is through. Sadly I do not yet know their name, (although I hope to learn more about them and their family in time) and even with that I still owe them immensely . My donor has given me everything, and the day I get to thank them in person will be a very tender and wondrous day. In essence it is really comforting to know that “goodbyes” are in reality just “till next time”.

Marissa was among one of the first people we met on the transplant team. I instantly became a favorite of hers because Her dog and I share the same name. She is so amazing, and has been a massive blessing in my life and the lives of my family. 

This lovely couple are such fantastic people. President and Sister Johnson treat all of us YSA members as their own children and would do just about anything for each and every one of us. 

   Another popular phrase is “Home is where the heart is” and to go with that “For where your treasure is, there will your heart be also”. As I have done my best to make Cleveland home, it has indeed become a treasure to me. Don’t get me wrong I love Utah so very much, it is where I grew up and where I grew to love nature in many of its forms. With that being said Cleveland has also left a lasting imprint on my heart. I guess to wrap up, I just want to say that although I don’t necessarily want to return to Utah with all my heart, I will again make it “home to me”. 

Post Transplant Update Week 30

Today marks a big day in Ben’s transplant journey. 

Part of the transplant surgery included Ben getting a chimney ileostomy.

The main purpose of this is for access to his new small intestine.

I’ve mentioned that he has to have regular scopes to detect rejection of the small intestine.

In order to easily do those scopes they use the ostomy.

Most patients have them for 3-6 months and then they reverse them.

Today was the surgery to reverse Ben’s ostomy. 

It is the final step for him before we can return to Utah to live.

They give you this handy pager so you know exactly when the surgery begins.

The surgery took 1 hour and 45 minutes.

Everything went according to plan.

He will remain in the hospital for 2-3 days.

Ben is finally free of ALL devises.

No tubes nothing for the first time in 5 years.

He is excited.

Unfortunately they did have to give him a big dose of steroids prior to the surgery so he will have some additional puffiness for a few weeks.

He is feeling good and moving around already.

We have to stay in Ohio for 1 more month to make sure everything continues to do well.

Then it’s home to Utah!!

Post Transplant Update Week 27

 

Ben reached 6 months post transplant today!

He’s doing great. 

The picture above was taken 2 years ago just a few weeks before we left Utah for Ohio. 

The ones below were taken just a few days ago. 

You can really see the difference between the pictures. 

Ben continues with recovery and the tapering of his steroid dose.

We just completed his first visit home post transplant.

He still suffers from intermittent headaches and steroid swelling 

But he enjoys eating foods he’s gone without for years. 

Ben had an appointment with his GI in Utah to arrange for him to begin seeing Ben as his doctor when we get back to Utah.  He will treat Ben under the direction of the Transplant team in Ohio.  All lab results will continue to go to the Team and they will continue to decide Bens care and the Doctor in Utah will facilitate it.  Bens doctor in Utah is the one who referred us to the Cleveland Clinic to begin with. He has been following along with Bens treatment here in Ohio via a Doctor Share program.  He is aware of everything and looks forward to working with the team which will allow Ben to move home to Utah.

It has been decided that Ben will have surgery on August 26th to reverse or take down his ileostomy.  

This is the last step that needs to be taken before he can go home.

Provided all goes well, he heals well and there are no complications,

Ben and I can move home to Utah one month after the Surgery.

All Together in the Beehive State

 

Waking up to this beautiful sunrise over the Wasatch Mountains is a sight I have missed!  Ben and I enjoyed a wonderful visit home where our whole family spent time together!  Our visit started off with another short rode trip as a whole family to St. George in Southern Utah for a family wedding where Ben was the Best Man for his cousin Calin. 

Then it was day after day of family time.  Cousin Alex came up from Las Vegas and he and Ben got in a little hiking. I think Ben actually went for some type of little hike every day.  He has missed his mountains. 

Ben, Ollie and Pop pop had to give the four wheelers batteries a charge with a little ride around the block.  Oliver kept stopping and looking back to make sure Uncle Ben was keeping up.  And what’s a ride around the block without otterpops on the porch afterward. 

We had an evening of shooting paper rockets with the air compressor.  Ollie helped grandma set up her fairy garden.  We enjoyed time in the backyard with my babies. 

Two Birthday celebration dinners and parties, one for Kyle and then one for Brooklyn.  Somehow I didn’t get pictures of Kyle’s celebration. :-/  

Lincoln Ben and I made a visit to the Teepee ranch to see my parents. It was the first time Ben had been there in over 2 years.  

Brooklyn and Dad did a little construction project for Brooklyn, she needed a new TV stand for her college apartment. We discovered she’s quite handy with a circular saw. :)

It was so wonderful to just be together, laughing and enjoying each other’s company.  Family is what makes life so wonderful.  I love his family of mine!! 

Baby Feet!

Brooklyn 21 years old!

Ben and Alex somewhere on the Mirror Lake Highway

Brooklyn mastering the circular saw.

An afternoon in the back yard with my grand babies!

Ollie helping grandma with the fairy garden.

Hiking with Alex

Otter pops on the front porch!

4 wheeler ride around the block.

The wedding in St. George.

My Beautiful Girls!!

Ben looking good as the Best Man!

 

Me and my sweetheart!

My Parents and their home in the mountains. 

Ben and Ollie having quality conversation over cold cereal. ;)

I know it was a bit of picture overload, but we’ve got a lot of time apart to make up for.  This transplant adventure of ours has really taught us the value of time, love, faith and family!  It’s easy to take for granted some of these things in the day to day busy lives we lead.  But, I have really learned to appreciate all the small things. My faith in my Heavenly Father and his timing has increased, I’ve learned patience, I’ve learned that time stands still sometimes but yet passes in the blink of an eye at others.  My love and appreciation for family and friends has become immeasurable!  This adventure has stretched me to do things I did not know I could do and refined me in ways I didn’t know I needed. I wouldn’t trade my experiences or the blessings Ive gained.  But, I will say this, at the beginning of the adventure it all seemed so BIG and I didn’t know how I was going to do it.  Now looking back at where we were 2 years ago and where we are now I know the destination will be worth the journey.  We’re not finished yet, but I can see it! 

 

Road Trippin’

Ben and I have been planning a trip to Utah for a while now, he is going to be the Best Man at his cousins wedding. We will spend a little over two weeks there.  About a month ago we bought round trip airline tickets for the trip.  A few weeks before the trip I told my husband we should have driven Bens new car home and flew back to Ohio so that when we move in a few months we won’t have to each drive our own car.  But after some discussion we decided since the flights were already purchased we would just fly.

Well about 5 days before our flight I again had a thought that we should drive the car.  Again everyone talked me out of it.  But honestly this thought would not leave me head... Drive the car.  I had this debate with myself and Ben and Lincoln on a daily basis.  Then I called the airline to see if they would refund me the price of a round trip ticket and let me purchase just the one way.  They don’t do refunds but they would give me credit for the 1st flight that can be used anytime in the next year.  This news made me again think we should drive.  Finally Linc told me he didn’t care, but that I needed to make a decision.  Back and forth I went in my mind.  It really was the craziest thing, I’m usually very decisive.  Our flight was for Wednesday morning, but if we were to drive, we would need to leave Monday morning to get to Utah in time. So finally Sunday Ben and I decided we would just fly.  Easier and quicker.  I went to bed and felt good about that decision.  Monday morning Ben got up and went into the Clinic for his blood draw.  I got up, said my morning prayers.... and there it was again as plain as day, drive the car.  That was it, I started packing.  I called Linc in tears and told him I couldn’t explain it and I don’t know the reason but I felt strongly we should drive.  So when Ben got home from his blood draw at 11:00 am, I said pack up as fast as you can so we can get on the road, were driving. Here we were making the exact same drive we took 2 years ago today, only this time we we’re driving west instead of east.  Sometimes in the early days of our adventure here in Ohio, Ben and I would be driving on the I-90 into Cleveland and I would often say “If we just kept driving we could be home in two days.”  It felt good to finally be headed home, even if its just a visit. 

I’ll never know why I had such a strong feeling, but I do know I tried and tried to talk myself out of it, but all along I knew we should drive.  It was the worst week ever, me questioning myself. Once I made the decision I felt so good about it, I knew it was the right thing.  Maybe it was safer than flying on a full flight and the risk of Covid, we’ll never know.  But I do know that is the last time I question myself and what I feel like was a prompting. 

So Ben and I packed up his new car and left Cleveland at 2:00 pm in the afternoon headed for Omaha, Nebraska.  A 12 hour and 35 minute drive of 814 miles.  We needed to try and do it in one day that was the goal.  If we got too tired we’d stop sooner but that would make the drive take us 3 days instead of 2. 

We made it to Omaha no problem.  The next morning it was the long trek across Nebraska, Wyoming and into Utah, another 13 hours and 55 minute drive of 946 miles. It was a long drive, but man did we have a fun time. 

* Toll Roads

* Beautiful Blue Skies

* The Mighty Mississippi

* Worlds Largest Truck Stop

* Sunset over Iowa

* Rolling Cornfields of Nebraska

* A lot of good  music

* Snacks and good Conversation

Road trips aren’t for the faint of heart but man can they be a fun adventure!