Marshall's music, t-cells, t-shirts and more

Sunday, May 15, 2016

Widowed

Widow. There. I said it. It only took six months, but there it is. Staring me blankly in the face as I type this just as it is you while you are reading this. It didn't feel or sit right with me for a while. Maybe not even now. Probably because I felt Marshall so closely and had some of the most spiritual experiences of my life just after his death. I still feel him around at intervals and Kezman much more frequently than myself. One time at a museum and another time at kindergarten registration (may I add that these were both times I was really, really missing him), Kez has informed me that his daddy is with him "all the time mom. Come on mom, stop crying, I saw a white light and he was there and saw everything with me". I believe that Marshall will help his son from the other side of the veil. I need ALL the help I can get being a single mom.

I've been thinking of one of the things that impressed me the most about Marshall while I was dating him. He would often visit two elderly widows. I remember them well and can see their faces and hear their voices because of how often we would visit them. Sweet Lillybell and feisty Antoinette. They were not his family nor members of his church. Sometimes he would play his guitar for them or sometimes we would just sit and watch a Jazz game. I grew to love these women just like they loved Marshall because we spent a lot of time with them and it seemed like they weren't afraid of anything. I was reading an entry in Marshall's journal the other day and I caught the words, "she was the most beautiful woman I'd ever seen in that moment" on the next page and chuckled to myself thinking, "now which girl is he talking about?" He wrote about a lot of girls in his journal- he was a little girl crazy for a while and I was pretty much the opposite- good at pushing guys away, so I'm not sure how that all worked out :). Anyhow, the woman he was talking about was actually Lillybell- well into her eighties and curlers in her hair. It was something she'd said about worrying about the afterlife that caused Marshall to view her in that light in that moment.

Now that I am a widow I know how much that time meant to each of these women. How wonderful for someone to just come offer their company- no matter what it was they did. Being a widow is often a lonely place.  It's not because we don't have friends or we are not outgoing. It's partly because we are grieving and don't want others to see it. Also partly because the friends and family in our lives do not fit in our world like they once did without our spouse. We are in the process of reinventing our lives and where we should be to benefit ourselves, but mostly our children without their parent. That includes location, relationships, everything. Just imagine every relationship in your life, especially the people closest to you, all changing all at once. BAM! You're no longer married (by no choice of your own), all goals change at once, and most importantly the person you loved the most and spent almost all phone calls, texts, relationship-building efforts on is also suddenly gone. Your kid now only has you to depend on for all physical needs. The very purpose you have been on the front lines fighting for years and basing all decisions, even who to work for and how to provide the best care for the cause you were engulfed in 24/7 is now no more... 

Now, being a part of this 'widow group' that really no one wants to be a part of- I have met more people who I revere and feel like aren't afraid of anything. They are strong, independent, and inspiring because they have to be. There is no other choice in the life of a widow. All while missing the person you love the most, you're expected to figure out all the bills, the legal matters, taking care of a home, a car, and most importantly kids by yourself. You're now living a life that you had planned and that had been ok to do with someone else alone.  Don't get me wrong, I am sure that people on the other side of the veil are trying to do their part, but I'm also sure they are trying to inspire others to help as well. 

One way I feel that Marshall has blessed me from the other side has been a friendship with an apostle and his wife. I appreciate such a busy apostle taking some time to spend with me last week. It reminds me of the scripture James 1:27 "Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world". 

I think Marshall did a great job at keeping himself unspotted from the world the last years. I also think Marshall knew more about life and what would become of his life than he would tell anyone, including myself and his mother. In fact, he wrote those very words down, "What I won't share with my wife or mom is the idea that maybe God is just giving me a little extra time to be with them before he calls me to the other side...when it's your time, it's your time". 

I also remember while dating him having a very prominent experience one night. I had gone into his home and saw posted on the fridge, "deep water is what I'm wont to swim in". It was a quote from the prophet Joseph Smith. It left such a HUGE impression on me that I almost broke up with him that night. I knew that Marshall would be called to swim in deep, strenuous, thrashing waters in his life in that moment. Although I had no idea at the time what would be in those waters, the Lord had given me a premonition and I do not deny to this day that after knowing that, I chose to stay by Marshall's side. I chose it. I think it's because I had just returned home from serving for a year and a half in a foreign country learning a foreign language living a foreign life. Timing is everything right? So I remember deciding, "bring it- I got this with you whatever it may be!" I never in a million years thought that would mean a long cancer battle, three FDA clinical trials, and now being widowed. I think if I had seen the future (which oftentimes on this blog I have posted I wish I could have), I may have actually broken up with him that night. I'm glad I didn't see the future. As hard as things have been and are I am grateful for who they've made me and the faith I now have in the Savior and eternal life. No one can take my trials away (I've wished a time or two), but they also can't take away my testimony and experiences.

Thursday, March 17, 2016

LUCKY

Today I have been thinking of how very lucky we have been to have Marshall as a part of our lives. He taught us more goodness and heavenly thoughts than I ever would have learned without his influence and without our experience. And for everyone who taught and continues to teach us how much good there still is in the world even when it looks so bleak.

I took a break from blogging for a while to try and process my very heavy grief. I was encouraged to blog or journal some more last month in a grief class I was taking and still haven't touched it until now. One of the thoughts I appreciated most from that class is,

                               "Every one can master grief save those who have it"

I will not be able to master my grief, but people keep telling me it will get better. Four months tomorrow. Today was the day he barely survived those four months ago. His ringtone whenever anyone called was, "This is my fight song". The last lyrics of that song still ring inside my head often, "I've still got a lot of fight left in me" because I do. Now I need to find that cause I am passionate for to fight about. Is it still curing leukemia? Is it something different? These and many, many questions are things I am discovering.

I'm grateful Marshall changed the name of this blog to Life Reinvented. I really have to reinvent my whole life now that he has passed on. My dreams are not the same and my plans are definitely not the same. My life and purpose used to revolve around my husband and the leukemia. Even both of my jobs I am able to work from any internet location so when we traveled for his treatments I could still work from whatever location we were in. Now that all that has changed, I find myself lost. Honestly, I am just trying to find myself and figure out who I am now. I am trying to reinvent my life. It doesn't work to jump to the WHY and get back to the normal. I am told new life will emerge, but I haven't seen it yet.

          "To live is to suffer; to survive is to find meaning in the suffering-
          if there is a purpose in life at all. There must be a purpose in suffering
          and dying- but no one can tell another what that purpose is"
                                             -Victor Frankl

Saturday, December 26, 2015

A Lesson in Prayer

Marshall Kenneth Jensen passed on to continue his mission with the spirits in heaven at 3:56 EST at the Hospital University of Pennsylvania on 34th street in Philadelphia on November 18th, 2015. Just as he last blogged, while we were busy making our plans to try yet another clinical trial, God had other plans for our beloved Marshall. We miss him dearly. After reading through his journal entries and several other things, it became very apparent that he knew his remaining time on earth would be short. His death was calm, peaceful, and a very spiritual experience for me. Some time I may write about the sacred experience, but at the present it is still so tender in my heart. In true Marshall fashion, the viewing was held on C.S. Lewis' birthday. 


Here is a link to the beautiful services that he wrote:

Please click here to listen to Marshall K Jensen funeral services


That in and of itself is a blogpost enough. I also wanted to share the prayer I was reciting every morning the last few days before he passed. I recited it from a book I was reading about being a praying wife. I had to work hard on my personal praying for quite a while because I felt as though I was drowning and that God was not listening to years of pleading for Marshall's leukemia to stay in remission. Also as I watched Marshall's intense pain get worse even though he was on a huge dose of methadone AND a morphine pump, it hurt SO much to watch; I still can't believe he could bear it and I felt as though my pleadings with the Lord weren't helping Marshall and the pain just kept getting worse.  Now I know that the purpose of prayer is for us to align our will with the Father, not for God to change His mind about what should happen in our lives.  Marshall fulfilled his mission on the earth and even the intense pain and suffering of the last four years with a smile on his face (even when it was paralyzed and he couldn't actually physically smile), music in his heart, and an unshakeable testimony of his Savior Jesus Christ.


Here are the words to my borrowed prayer:



"Lord, You alone know the depth of the burden my husband carries. I may understand the specifics, but You have measured the weight of it on his shoulders. I've not come to minimize what You are doing in his life, for I know You work great things in the midst of trials. Nor am I trying to protect him from what he must face. I only want to support him so that he will get through this battle as the winner.
God, You are our refuge and strength, a very present help in trouble (Psalm 46:1). You have invited us to "Come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need" (Hebrews 4:16). I come before Your throne and ask for grace for my husband. Strengthen his heart for this battle and give him Patience to wait on You (Psalm 27:1-4). Build him up so that no matter what happens he will be able to stand strong through it. Help him to be always "rejoicing in hope, patient in tribulation, continuing steadfastly in prayer" (Romans 12:12). Give him endurance to run the race and not give up, for You have said that "a righteous man may fall seven times and rise again" (Proberbs 24:16). Help him to remember that "the steps of a good man are ordered by the Lord, and he delights in his way. Though he fall, he shall not be utterly cast down; for the Lord upholds him with His hand (Psalm 37:23-24).
I pray he will look to You to be his "refuge, until these calamities have passed by" (Psalm 57:1). May he learn to wait on You because "those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31). I pray that he will find his strength in You and as he cries out to You, You will hear him and save him out of all his troubles (Psalm 34:6)."

Here are a few quotes that were shared with me from Elder Bednar's office that I have loved as well after Marshall died. 

President Joseph Fielding Smith (in his remarks at the funeral services for Elder Richard L. Evans)
“May I say for the consolation of those who mourn, and for the comfort and guidance of all of us, that no righteous man is ever taken before his time.  In the case of the faithful saints, they are simply transferred to other fields of labor.  The Lord’s work goes on in this life, in the world of spirits, and in the kingdoms of glory where men go after their resurrection.”

Elder Neal A. Maxwell
“A mortal life may need to be ‘shortened’ by twenty years as we might view it—but if so, it may be done in order for special services to be rendered by that individual in the spirit world, services that will benefit thousands of new neighbors with whom that individual will live in all of eternity.  Perhaps this reality is yet another reason and reminder why we are urged to pray only for ‘our daily bread,’ for disciples must be portable.  Our omniloving and omniscient Father will release us when it is best for us to be released.  But each such release of a righteous person is also a call to new labors” (“All these things Shall Give Thee Experience, 99).

The night before Marshall passed, I went from the 9th floor of the ICU to the 5th floor and found a large, open restroom where I could kneel and pray aloud. In my mind, my thoughts were all ready to say, "Heavenly Father, please bless us with another miracle". To my surprise, when I opened my mouth the words, "Heavenly Father please bless us with one more day" came out instead. For once in my life, my prayer aligned with the Lord's will. I am grateful for that moment and every moment I had with Marshall on the earth. His spirit inspires me to live better, to live as the instrument and purpose that God wants me to, and strive to secure myself to heaven as Marshall and many other spirits lately have. 

How could he have known 2 years ago that some lyrics would describe his passing so well? "In the ink of an eye I saw you bleed, through the thunder I could hear you scream, solid to the air I breathe, open eyed and fast asleep...Ragged down worn to the skin. Warrior raging, have no fear. Restless with an angel's wing, well I dig a grave to bury you. Released from circles guarded tight". You can click on the hyperlink to hear Marshall and I perform this song at a benefit my McKee family held for him, Miracles for Marshall called, "Secure Yourself to Heaven". This song almost describes perfectly what we went through at that time. "No feet to fall, you need no ground. Allowed to glide right through the sun". What a blessed experience to be with him in those final moments.  As he was passing on, I was holding on to his ankles in what seemed like my last ditch effort to keep him on earth a little longer. I was wishing I could just hang on and he would just take me with him when his amazing spirit departed from his body. There have been many moments lately when I wish that last ditch effort would have worked as I sort through my emotions. But I have to 'fasten up my earthly burdens' for I have 'just begun'.  Marshall truly is the winner of this battle and is flying high like the eagles. As much as I wish I was soaring high with him, I have a beautiful little boy who is a mini Marshall and I am blessed with his smiling, optimistic spirit living on through his son. I'm blessed to continue to raise him as Marshall so badly still wants to do. Merry Christmas in heaven Marshall. 

Thursday, November 12, 2015

Other Plans...

As Amanda and I continue to search for a cure for my leukemia the words of John Lennon continue to ring true, "Life is what happens to you while you're busy making other plans." 


Nearly four years have gone by and we're still fighting. As I sat down to eat breakfast in my little hospital room this morning I realized just how lucky I am. 

I realized that if someone hadn't donated that bag of blood hanging above my head - I wouldn't be here. As a cancer patient I'm lucky to know how fragile each moment is. It keeps me humble that's for sure and grateful for that special gift - to breath - to be alive. 

When placed in a position of suffering, one often wonders, "What is the purpose of this?" and "What am I supposed to learn from this experience?" If I've succeeded at anything at this point it is getting people to pray. Your prayers are truly supporting a miracle. 

Most recently my fight with not one, but three bacterial infections that sent me into septic shock. A state that has a mortality rate of nearly 50%.

Let's have a look at the culprits:

Enterobacter
Klebsiella
Lactobacillus
Since my trip to the ICU I have been able to fight off the first two bacteria with the right antibiotics. However, the third bacteria (which I'm told is pretty wimpy to someone who has a healthy immune system) has been lingering. My doctors suspect that it is hiding out in the central line in my chest. 

To avoid future complications we inserted two IV lines in my left arm today and tomorrow we are scheduled to remove my central line and hopefully any infection that may be hiding there.

The plan at this point is to pull the line and continue to allow my body to recover from the last round of chemo. It could take a couple of weeks to reach this point but I am getting neupogen shots each day to help speed up the process.

At that point, barring any other setbacks we will proceed with three days of preparatory chemotherapy and then introduce my re-engineered t-cells. Thank you for your prayers. I am ever grateful for your support. 

Sunday, November 1, 2015

You Say Goodbye and I Say Hello

Goodbye Utah, Kez, friends and family, house, cars, dogs.  Hello Philadelphia, City of Brotherly Love, Hospital University of Penn, and T-cell Try Number Two! We at least made it across the country. There were many days that I wasn't sure if we would even make it this far so this is a step in the right direction and a feat that was not easy! As many of you know, Marshall had been in the hospital back in Salt Lake for quite some time with severe pain. He was pretty much only released Thursday so he could pack and fly out to Philly early Monday morning. The severe pain is the result of the leukemia growing out of control over many spots in his body namely his hip, knees, ankles, wrists, and back.  We flew here with the help of wheel chairs and first class flights (thank you Jones)!  Our flights took all day Monday and the plan was to meet with the doc Tuesday and admit Marshall Wednesday to start prep for t-cells. As we are now used to, the plan all changed...
Overlooking the Delaware River


Tuesday morning Marshall awoke in our hotel room and could not move. He informed me (or more like cried and screamed to me) that he could not get out of bed; that we would have to call an ambulance because he could not so much as lift his arms to get dressed. I didn't like the idea. We've had our fair share plus some of emergency room experiences and the one here in Philly was by far the worst. Waiting in the ER for five hours while my husband screamed in pain then waiting another half day or so for a room to open in the hospital did not seem like the best option to me. Don't get me wrong, I was listening to him as he begged me to call an ambulance, but it seemed to me he was in a state of anxiety and panic. He hadn't slept much the night before due to his pain. I seriously pep talked him for about 3 hours which is odd for us because usually he is the peppy one. I told him if he could just roll to a wheel chair I could get him to the appointment with his doctor and we would ask the doc to admit him TODAY.  I also assured him that if he was not able to roll into the wheel chair that I would dial 911.


He did it. It hurt. It was painful, but I helped him dress and roll over into that wheelchair. We took a taxi to the hospital and after meeting with the doctor we were told Marshall is not ready for t-cell treatment due to the cancer being so out-of-control as I'd predicted he'd say (we only heard that a few times last year). If he were to receive t-cells at this stage either the t-cells would reek havoc OR they would take a while to react if they work and they would have to treat the cancer with steroids or chemo that would kill off the t-cells.  So last year, there wasn't enough leukemia to create the reaction wanted. This year there is too much. I pray we can find that sweet spot and try this treatment again. So as the plan is now, we will wait for Marshall's counts to tank, then recover, then go on to what we planned. That means we won't be home for Christmas. As we know, that could definitely change too.


Today is now day 3 out of 5 on a chemo called clofarabine. It's used to treat patients with refractory disease. He finished his third bag so that means he is now officially half way done with treatment. We are not newbies to this, so we know most side effects come about a week later. His counts are definitely dropping, but they were super low prior to this due to cancer building up in his marrow. He finally had a break today from transfusions, but up to this point in the hospital he has had to have either a blood transfusion or platelet transfusion or both every day since he was admitted. The first 2 days the pain did not let up and I was nervous the chemo would do nothing to the disease.  Finally today he seems a little better. He walked a little without the use of a wheelchair. In fact he is walking to the bathroom without his walker right now and I'm telling him how proud of him I am.

Marshall's first walk day 2 in the hospital. He made it half way down this hall.
Some moments I realize how trapped and consumed I've allowed myself to become in this cure crusade. I do think it is noble to lose myself in helping my husband and the search for a cure, but I also have come to realize that it's caused me to become depressed at times and not myself. Dear friends, I am sorry I often cancel plans, but click here if you want to know more of why caregivers often cancel.  I feel like I've lost many friends over the years (although the friends who have stayed in touch are golden friends- the kind that you want to surround yourself with because they love and help when life is hard and keeps being hard) because my time is completely consumed with this. When it isn't, it's with my little boy or my work. Speaking of our little boy, my heart hurts missing him so much! He chose every single time I asked him to stay back home where he could go to pre-school and soccer and be with grandma. They have a very special bond and I am so, so beyond grateful to my mother for sacrificing so much so she can care for him and our dogs while we are battling on across the country. We watched his Halloween program the other day and he did such a great job. We also watched his last soccer game. I know this takes a toll on him, but we FaceTime him about five times a day (sorry mom). If Marshall can get stable enough I will fly home to see him or we will fly him out here to us.
Poems and songs about Halloween
Speaking of hurting hearts, these four years have taken a toll on my health as well in the form of chostrocondritis. It's not terrible- just a condition every once in a while where my heart literally hurts. It's usually only brought on when there is a lot of stress and I am sure it will go away completely if/when that gets better.  I haven't talked about this much on our blog, but I read two other blogs that made my heart hurt. One was comparing infertility to cancer by saying that because those experiencing it don't talk about it much, it hurts even more. The other was comparing depression to cancer for a similar reason. I wanted to scream from my hurting heart that cancer often causes both infertility and depression. This has been the case with us. We tried two cycles of in vitro that failed this year. We've stared at hospital walls that have felt like prison walls. I don't say this to compare burdens. In fact, that is what bothered me about it so much in the first place.  The fact is, we ALL have our struggles. Be they small, large or somewhere in between. If you're experiencing some kind of burden in your life click here. I was reminded recently at a Peace Retreat of that popular analogy that if we were to all write down our problems on a piece of paper and throw them in a pile we would want to grab our own right back after seeing the others!

When you're going through a rough patch which can be years or a whole lifetime, just remember that often posts on blogs, FB, instagram are not the whole picture.  In the age we live in sometimes it can feel like our lives suck compared to those perfect posts. One of my favorite lines from Marshall's songs says, "There was a wise man who could only see the way the world was supposed to be". Talking about it is one thing but doing it is a whole other. I'm not a good talker, but I'm a good listener. It's important to talk about the hard things. I aspire and try to be a good doer. Einstein invented the equation E=mc^2 to try to help the world. If he'd known that it would have been used for that atomic bomb he probably would not have lifted a finger. Sometimes we portray our ideal world through words and pictures, but often it isn't reality. I'm guilty of this too, but it's important to be real and personal. 

I'm grateful for being able to share my sorrows AND joys through this blog. Through the crowning atonement, we can come together AT ONE. One thing I have learned to appreciate more about my brother and Savior is that he didn't see himself as a victim despite all that he had to endure and his world and friends crumbling around Him. He forgave his crucifiers and endured his pain for a greater cause of peace in life, death and good will to men. He went into his mission knowing that it wouldn't be an easy feat! That it would mean torment and pain, but would also give joy and life. He allowed so much pain so we could all learn to serve each other instead of hurt each other. If we remember Him more throughout our lives, through him our sorrows and burdens can be eased. That equals less pain for him in that atoning moment. Less comparing. Less hurt. More love, goodness, and help.

Thursday, October 22, 2015

Back to the Future Day

Conrad was an intelligent kid. I'm pretty sure he would have majored in the sciences if he stuck around long enough to go to college. He had a great love and compassion for animals and would often bring a new creature home to live with us. You name it: fish, frogs, birds, lizards, snakes, rabbits, even our dog Misty. Conrad always seemed to find a way to convince our parents to let us "keep it". 

He also loved computers and computer games, and I could easily see him going into the computer science field. He loved music and singing. He had begun teaching himself hymns on the piano and even writing and playing his own songs on the guitar.

We used to trade basketball cards and we bargained and swindled until we had built up a pretty substantial collection. He loved being active; basketball and roller-blading being two of his favorite activities.

At times it was hard to be his younger brother because one day he'd be my best friend and the next weekend he was 'too cool' to have anything to do with me. At the time it was devastating but I understand it much better now.

In simple terms Conrad was fun. He used to tend our younger brother and sister. Aside from the heaping pots of macaroni and cheese and the learning activities he came up with he also had a very serious rule, "HAVE FUN".



On a day when so many are thinking of time travel, I am also contemplating what I could do if I could go back in time. You see,17 years ago today my brother Conrad succumbed to his demons and took his own life. A life full of meaning and purpose and yet the clouds were too dark, the pain was too strong. He has now been away from us, just as long as he was with us and it still hurts. I never did get to to say goodbye to my dear brother. However, as with many things in life, this tragedy inspired a me to write a song.


Now I find myself fighting for the very thing that my brother was desperate to escape, mortality. I can't tell you everything that lead up to Conrad's decision to jump from that overpass. If I could time travel that is the first place I would go. I would tell him how much I care, that his life matters to many and how much we love him.

I don't currently own a nifty time traveling delorean, but I can live every day as if it were my last. I can reach out and be kind. If you know someone who is truly struggling don't wait. Let them know they are loved. Help them get help. Don't wait for someone else - it may be too late.

One thing I've learned as I've struggled through cancer treatments is that there is so much good in the world. There are so many good people who want to and are driven to serve by the light of Christ that burns within them. 

Remember these words from one of my favorite recording artists Dave Matthews,


"Gotta do much more than believe if you really wanna change things! 
Gotta do much more than believe if we want to see the world change! 
Gotta do much more than believe go on and try it go on and try it! 
Gotta do much more than believe if we want to see the world change!

Sunday, September 20, 2015

Family Pics 2015

These pictures mean so much to our family as Marshall is in the middle of his fourth fight with leukemia and is preparing to try t-cell therapy for the second time. He puts such a big smile on his face even though he's not feeling well. 

We give credit where it is due to the amazing Heal Courageously Peeps! Thank you, thank you Michelle and Alex. We really enjoyed our time with you and are in awe of Alex's amazing skillzzz. Please check them out at http://healcourageously.org/ and like Heal Courageously on Facebook. If you or someone you know has seen the 'darker side of life' and are struggling, they can help you see some light again. At least the light of their camera flash.