Bitter or Better?

I hope this isn't a useless plug, but I just watched this documentary called The Lottery of Birth on Hulu and I recommend that every single person watch it. And that every single person NEVER stop questioning.

There is a question that has been a constant in my life especially these past 2 years. Am I being bitter or better? I confess that there are moments I have been bitter, but when I step back and try to get a bigger perspective I pray that I will be better overall for the experiences afforded our family.

"Yesterday is gone. Tomorrow has not yet come. We have only today. Now let us begin."

 -Mother Teresa

WARNING: The next 3 paragraphs are full of complaints and selfish attitude. I suggest if you don't want to hear it just skip over to the better part. I apologize in advance.

These are the following reasons that at some points in our journey I have justified (P.S. Justification is the evil form of sanctification- so this is the little devil on AJ's shoulder) being bitter. The treatments we have paid tons of $$$ for have made my husband completely sterile. If we want more children of our own we would have to pay tens of thousands of more dollars to try and may or may not be successful. The evil circle of modern medication = more and more money for them. If we are successful, will daddy be around for his children? 

For the last two years friends and family nearly always ask, "How is Marshall?" I rarely get asked, "How are you?" anymore. I haven't been able to pursue the Masters I hoped for and am instead working part-time to pay off medical bills. Bitter that Marshall lost his full tuition scholarship and half a semester of work due to a leukemia relapse. Bitter that the plans we made when we got married are on hold to fight a deathly disease (but hey who's plans actually do stay the same after they get married right?). Bitter that Marshall can't be outside a certain mile radius of his treatment center.  I think overall I feel we have lost a certain amount of freedom to travel where we want, to have kids when we want, and to study when we want. 

I missed out on so many early moments of my son's life. Bitter that it is so hard to make future plans without the constant nagging that another relapse may occur where we would have to drop our entire lives again. Would he live through ANOTHER harsh treatment plan?

Well if you lasted through that negative part, let me account for every aspect above and tell you now why they have made me better. I imagine this is the angel on my other shoulder.

I appreciate the one child I have now more than ever and can relate a little more to people who struggle with infertility. I now have the opportunity to adopt different ethnicities like I always wanted (HELLO- do you remember Kez's birth!?) if IVF doesn't work.

The phrase, "A Window To His Love" that my mother-in-law used with me one day has so much greater meaning in my life. When we forget about ourselves even a little and think of others, we become a little more like Our Savior. I remember my senior year of seminary singing that song with Shelley, Jamie, and Natalie. "Until only He can be seen and I become a window to His love". Maybe people do only ask about Marshall but I hope I have become a little more transparent in the process.

Through my part-time job I have met some truly magnificent people (and hopefully even kept up my Portuguese a little). People that do not get angry. Ever. People that are laid back and fun (mostly Brazilians) and who have worked with me so well through our crazy schedule of treatment in Texas and constant doctor visits, etc.

I have been able to spend MUCH more time with this positive dude I married. Dear Retirement, We are ready for ya! Love, The Jensens.

I've learned that some of the events, trips, and things that consume most of our thoughts and lives to keep us "busy" are really, really not as important to us as other things are. Time spent with those you love and in the scriptures or inspiring books carry much less remorse. I also realize that Kez would not be the wonderful boy he is becoming if it hadn't been for each of the people who have so graciously taken him under their wing. I am so grateful for them and each of them have some credit invested in his strength.

Lastly, it really is better to not focus so much on the future. Live the present moment you have now wherever you are in the world and whatever point you are in your life the best that you can! “You spend your whole life stuck in the labyrinth, thinking about how you'll escape one day, and how awesome it will be, and imagining that future keeps you going, but you never do it. You just use the future to escape the present.” ― John Green, Looking for Alaska 

Instead of focusing on what we WILL be doing, focus on what we ARE doing. We can each make a better difference in our situation, our community, our local surroundings. Every where we go is the home of someone somewhere. The more we travel, the less likely we are to call one place home and invest in making our little space on earth a better space for the weary traveler to enter.

The Wisdom of Trees

After an eye appointment, chest x-ray, bone marrow biopsy, bone density scan, multiple blood draws, and a pulmonary function test, the results are in...

My doctors have determined there is no detectable evidence of residual disease - I'm cancer free! This doesn't mean that the leukemia won't return. In fact we received this same news last year after my transplant. However, I'm in the clear for now and you better believe I'm going to enjoy it!

For those of you that want more detail (Mom this is for you) the bone density scan revealed my bones are weak for someone my age. This is not surprising considering all the chemotherapy and radiation I've endured. 

We also found that the transplant stifled my thyroid's ability to produce the hormone thyroxine. This is a fairly common ailment known as 'hypothyroidism' and can be treated with medication. Ugh, another pill - two steps forward and one step back I suppose ;)

Sounds good Mr. Johnson. No wait, that's my iPod... 

I was walking my dog earlier this week when I decided to turn off the music and just enjoy the quiet of the morning. A bright fingernail of a moon hung in a cloudy blanket of stars to the West while a vague halo was building over the silhouette of mountains to the East. As I walked through the strange valley that separates night from day I was taught by the wisdom of trees.

I pondered the absolute strength of a massive tree along my path. I marveled at how it stretched in a constant desire to gather light, how anxiously it must anticipate the rising of the sun! 

Awed, I contemplated it's perpetual resurrection. In Spring it toils in steady slow motion, swelling forth, each budding branch expanding into the heat of longer days. Struggling in splendor, reaching its zenith only to whither and burn out in a flash of autumn brilliance, to fall to the ground and decay. An arctic skeleton - is all this effort wasted? 

No! It has stretched the tree's capacity for grandeur. As the earth swirls back into Spring it strives again to reach a fraction higher. By increments invisible it climbs into the heavens. 

Starting Over Again... Again :)

Occasionally, life gives us a "redo", a chance to start over. Last year I did just that; I nearly died fighting off cancer, and then I started over. I began physical therapy to regain my strength and stamina, I took the pills and supplements, I got back to work, I got back in school, I got back into my "routine". Things were looking good and then... Relapse...

So here I am again, 3 months post transplant, waiting on the results of my recent biopsy, starting over again... again!

We learn by repetition, like listening to our favorite song, we anticipate the next movement, music echoes the refrain, something beautiful transpires. Fighting through this cancer experience again has etched the following lessons deeper into my soul:

Be Grateful

Every day is a blessing. Every problem an opportunity. The following maxim has always impressed me, "I had the blues because I had no shoes, until upon the street I met a man that had no feet." 

Sometimes simple or even silly things are overlooked; shoes, crisp mountain air after a rainstorm, a smile from a stranger, quality toilet paper. There is always something to be grateful for!

I could be bitter that my cancer returned, or I could be grateful that I'm still alive! When I'm feeling particularly unappreciative I think of my amazing wife and son, how can I not be grateful for them?

Be Positive

Positivity doesn't demonstrate naivety, nor does it mean things are not difficult, the key is to find happiness in hardness. 

I'm not just talking about a mindset. Positive thoughts flow from positive actions, if your having a bad day, go do some good! Even if it doesn't cheer you up, it may brighten someone else's day? 

And don't forget, "that which ye do send out shall return unto you again..." It's the law of karma my friends. Let's spread some positive vibes!

Be Yourself

It is not often that life gives you a chance to start over. Although it may be difficult, it is a great opportunity! Ask yourself if what you're doing today is getting you closer to where you want to be tomorrow, to who you want to be tomorrow. If it's not, why are you doing it?

Alright, enough quotations and cliches let me give an update: I'm now over 100 days post transplant with no signs of GVHD (Graft Versus Host Disease). Some would say this is a good thing, others may worry that the transplant hasn't been aggressive enough. I'm not a fan of worrying so I just try to take things a day at a time. If that gets too stressful, an hour at a time, or even a minute - you get the point :) 

Shortly after my transplant I was on so many medications I used a weekly organizer for just one day! My kidneys were not handling it very well.

In the last three months I've been able to decrease my consumption from 37 to 11 pills a day! That, along with generous hydration, has helped my kidneys recover. My baseball hat collection nearly doubled this Summer but I'm happy to report that my hair is finally growing in. It is much darker, and quite thin and soft, but it's there! 

Last week I had my umpteenth (I stopped counting) bone marrow biopsy. Should this one come back clean, I will begin tapering off my immunosuppressant medication (Tacrolimus). Not only will my immune system become stronger - allowing me to go to church and participate in other regular social endeavors - I will also be able to discontinue my daily magnesium infusions and have my central line removed. I cannot tell you how excited I am to take a shower without a plastic cover over my chest!

For now I'm just trying to smile through life's rainstorms. At least I have a poncho right? Oh, and it doesn't hurt that this photo was taken at the Dave Matthews Band concert either ;)

Day 69 Post Transplant

Blessed to have these 2 mammas!

I keep trying to get Marshall to provide an update here, but he has been super busy helping potty train Kez while I have been at work a lot. He is a super daddy! He's still tired and I am so thankful for all he has been willing to help with so I can help pay some bills and learn a new responsibity at work.

Kez sporting the outfit grandma Lucile got him from Hawaii

Kez has done really well with potty training so far and I hope he keeps it up. I know he's a little young for a boy, but his cognitive skills are getting better and every day he wakes up bigger. I really hope Marshall stays in remission this year for many reasons, but one of them is so that we can attempt to have more children via IVF. I love Kez so much and he makes every day better for our family.

Marshall goes into the hospital on a weekly basis now. He is there now doing a pamidrinate infusion for his bones. He has osteoporosis, so to try to avoid breaking bones, they do this infusion. He can tell you more about it when he finally gets on this blog again. His creatnine levels have been high for a while and doctors and P.A.s say it is very typical after being through not only one, but two bone marrow transplants. 

He still has not needed a blood transfusion through all of the second transplant. For a while, people kept coming up to me and asking, "Why is he so pale/yellow?" His blood levels were low for a while, but not low enough to receive a transfusion. Right now his blood is coming up on his own. Hopefully it will continue to do so because it's quite possible the leukemia would be coming back if it starts going down.

His 30 day bone marrow aspirate came out clean with 100 percent chimerism. This means he is working on his third set of DNA and we know through a slip of the delivery guy that this time his DNA is foreign (it came from a man outside of the United States). So now not only am I married to a younger bone marrow, but a foreign bone marrow. Life is never dull with this guy that's for sure!

Marshall's attitude is a lot like this and Kez's is like this at his appointments. Some weeks I have just been staying home with Kez now that Marshall is doing well. Since it is flu season soon Kezman will not be allowed in the clinic (no kids during this time of year).

 We had a great surprise from Landon Cooper from Miles to Give. Check out his story here: http://miles2give.org/.  He ran for Marshall on my birthday while we were in Texas.

Speaking of birthdays, Marshall turned 29! I always think his birthdays are extra special because if it weren't for a couple young men willing to donate their bone marrow, he would not be alive still today. This year thanks to my friend Jen I was able to take him to a Dave Matthews concert:

He also got a new bed that is supposed to be good for his back, but I think it is too firm for me. I have been doing a lot of things around the house to try to match the new paint and flooring that was put in the house while we were in Texas with Marshall's treatments. Maybe I will make a blog entry about all the steps of sanding, painting, all that if someone wants to know, but for now here are some pics.

Tyrel and Melanie moved out and I just want to give a special thank you to Melanie and Matt Mortensen for allowing us to enjoy our home a little more while Marshall has had to be couped up. We did make a temple trip with them before they left, so that's good!

We have a new sister in the Hunt family! Her name is Vanessa. She is from California and I just love her to pieces. Her and Sam are great for each other! We also found out that Matt and Brielle are having a BOY and I wish they were here for Kez to enjoy his new boy cousin, but they took off to Kansas so Matt could go to chiropractic school for a few years. Brielle's sister Jilisa threw a very fun gender reveal party.

Sorry for the picture overload, but I'm not feeling too wordy today- I'd rather show you what we've been doing. I pray every day that the Leukemia will stay away. In the meantime we try to make every day the best we can. In 30 days Marshall will have another biopsy- his 100 day check-up.  Doctors say there is a seventy-five percent chance that it will come back and we will be back to square 1. I am hoping that Marshall falls in the twenty five percent category like he fell in the twenty five percent category last year when it came back after first transplant. I try to keep myself busy to keep the numbers from nagging at my scientifically-minded mind. If it does, we will continue to fight. Thanks for reading our blog and fighting along with us while you have your own challenges in life. We love you all- to your health!

TRUST

Trusting in a higher power. Proverbs 3:5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." And for dessert, the cherry on top, the extra wisdom: verse 7: "Be not wise in thine own eyes: fear the Lord, and depart from evil."

I have been ignoring the blog for a while. If I was completely honest with you I would say that I have been trying to ignore the fact that we are still at the front lines of this leukemia fight for a while. It gets weary. I am worn and down-trodden.

Church was wonderful today! I think I say that every week. I do not know how people go through life without the strength and power the gospel brings every time I learn more and more about it and about Him. My Beloved Eternal Father who forgives me when I try to do all things by myself. When I say by myself I do not mean without help from others (life would be impossible without that right now!), but I mean without Him. When I am too angry watching my husband suffer to humbly retrieve to my knees and talk to Him about why and how I can help my husband and son all over again.

For a long time now there has been this pioneer story that keeps being repeated over and over in our ward. It is about a tiny 5 foot nothin' pioneer woman. When her husband told her to leave him on the side of the trail to die she screamed, "I will not be a widow in Zion!" and threw him in the hand cart which she carried for who knows how long. A cute couple (the Wrights) even reenacted it on a trek.  At first I resented that I kept hearing the same story over and over. Then I realized He was communicating with me. An answer to my prayer.  Some days I feel that I am that woman. Pulling my little family along and praying that my husband will live through another day. Not wanting to be a widow!

Today finally when a High Councilman spoke I realized He was trying to tell me to get in FRONT of this trial. The Lord will allow a way out if it be His Will. If that is not His will, "And should we die before our journey is through, Happy day! All is well. We then are free from toil and sorrow too; With the just we shall dwell!" I don't want you to think Marshall is dying here (although he was 0.16 away from official kidney failure this week), I do hope he lives on, "But if our lives are spared AGAIN" (again is very important in his case- those of you who know him well know he's lived through some crazy stuff and now he is on transplant 2). "Oh how we'll make this chorus swell! All is well!"

I want you all to know that your prayers for him were and are being answered. He is doing well. In the case that things get worse I wanted to write this down in case I am not strong enough to do it later, but I know that no matter the outcome your and my prayers will be answered according to His plan. [Disclaimer: I may have just written this blog post in order to not eat the last 30 minutes of this 3 day juice fast that Melanie and I have been doing, but it worked! And I am going to eat now!] Just like pioneer journals are read and inspire us today for the trials our ancestors went through I hope someday to print this and have Marshall inspire those who come after us through this trial.

The Contest

It's good to be back in Salt Lake City. We arrived last Sunday afternoon. While we were in Texas my brother and his wife moved into our basement and (with the help of some generous friends) have been making renovations to the house. I felt like I was on one of those home makeover shows. New carpets, wood floor in the dining room, tile in the kitchen, new paint, and new furniture - they've been busy! Pictures to come - they are trying to complete the finishing touches before my transplant.

I start preparatory chemo tomorrow at noon. This time the drug is Fludarabine. According to Wikipedia, "Fludarabine inhibits DNA syntheses by interfering with ribonucleotide reductase and DNA polymerase." I'm not really sure what that means, but my incredibly intelligent wife (biology major) could explain it to you if you'd like.

The good news is that my doctor told me the dose is small enough that I should be able to keep my hair this time! I am scheduled for chemo infusions Mon-Wed. I also have radiation on Wed (a very small dose compared to last year). I get a break for the 4th of July and my transplant is scheduled for the 5th. 

The reason the chemo and radiation isn't as extreme as last year is that my transplant is going to be a little different. We have a new donor - perfect match again - but this time I will undergo a "non-myeloblative" transplant. This means that we are not counting on the chemo and radiation to kill off any cancer cells that may be lurking. The preparatory regiment is only to weaken my immune system so that the transplant can engraft. Basically we are counting on the donor cells to kill any cancer that's hiding or tries to come back. This is called the graft versus leukemia effect. On the other side the transplant can also fight my body, this is called graft versus host disease.

After our family transplant consultation with my doctor my Father-In-Law asked, "Have you been practicing your tight-rope-walking?" 

It's going to be quite a tight rope walk starting next week! I am grateful for the amazing support system that I have. Thank you again to everyone who has been so kind, and charitable to my family. I know that I am not alone in this trial. I understand how busy life can get; often it almost feels like we are in a race or contest. I appreciate the many who have taken time out of their busy schedules to serve me and my family. In closing I'd like to share with you a dream a had a few nights after we arrived home from Houston.

The Contest

6/27/2013

Last night I dreamed a dream. The details of which are now obscure. What I do remember is this.

At the commencement of the dream I was amidst a contest. In front of me was something very desirable. The other contestants were standing in a line with me and they also had an object of great desire before them. The object itself was locked somehow – not necessarily by a key but by some puzzle or riddle. The object and the puzzle seemed to be different for each person. More desirable than the prize before me was to be the first one to crack the code – there was a glory in it. Over a loud speaker a voice was urging everyone to hurry, hurry and be the first – to win the race.

Although I didn’t know what being the first would bring me I really wanted to win! It seemed I used all my mental capacities and physical skill to solve the puzzle or “open the box” before me. My efforts were fruitless and I began to despair.

Soon I noticed a commotion. One contestant had left their station and had began to walk down the line and “open other peoples boxes” – I wondered how one person could be so innovative as to know how to solve so many puzzles that nobody else could? I watched in amazement, and wondered why this individual hadn’t been announced the winner. It was then I realized that their box, their riddle, their dilemma had not been solved.

Epiphany, I left my station and began to “open up boxes” for others with ease. Down the line I went and soon others began to do the same. The voice on the loudspeaker was shouting as if we had broken the rules and would be disqualified. It didn’t matter though, those who had been served were happy and those who served even happier. They had attained the object of desire, not alone but together and for eachother.

Shingles, Surprises, and Sheeshes

Marshall has felt so well- the best I have seen him since he was diagnosed with ALL a year and a half ago. His blood counts have also been superb- his neutrophil number was the same as mine last week! The P.A. and doctor here told us that Marshall could go without his acyclovir and his mask and fly home for a few weeks while he had his mandatory break from the blinatumomab.

Well we took it and ran! We flew home on a Saturday without telling any family or friends. Julie did know I was coming (not Marshall) and I told Kelly because if anything went wrong I wanted someone to know.  We wanted to be able to enjoy time with family and friends while Marshall felt so well because we know from experience as soon as we are back for transplant he probably won't be able to do much. Also. Marshall had some trasplant work up he needed to do while we were in Salt Lake.

On Saturday Cyndi told the Jensen fam that if they wanted to do a video for Miracle for Marshall that was going to happen this was their chance. So after we surprised Tyrel at our house,

we headed to West Valley to surprise Marshall's parents in the middle of their interview with Cyndi. We stayed at a park a block and a half away until Tyrel texted us the code text to come. I wish I had that video, but we do have when we surprised Melanie. The next day we went to Barry and Julie's. Barry said he wasn't surprised because this is totally Marshall's nature. I agree with him wholeheartedly. After Marshall was diagnosed last year I told him I could go the rest of our lives without any more surprises, but Marshall loves to surprise! Let's hope he surprises all the doctors and beats this leukemia even after relapse.

Our next surprise was to drive to Miracle for Marshall in Idaho on Monday that was put on by my marvelous McKee family! YES we are blessed to have such marvelous friends and family. $7,000 was raised and we thank each and everyone that bid on items in the silent auction in Utah and Idaho and who have donated to our fund to help Marshall have a miracle! I wish I had my other computer with pictures and videos Brielle gave me, but you can check out more about Miracle for Marshall here: http://mattandbriellehunt.blogspot.com/2013/05/miracles-for-marshall.html

 

I also got to have some fun while I was in Utah! My wonderful sister in law Julie wrote an essay about our story and I won a Mother's Day makeover called the Beauty of Mom from Lunatic Fringe salon in Sugar House. They darkened and thinned out my hair. I actually wouldn't mind having a fro so I'm still getting used to the lighter feeling. It's nicer in Texas that's for shizzle!

That night we went to Alex's preschool graduation! I remember how small he was when I first met him and I am such a proud aunt for what a smart little boy he is! His teacher will have a challenge challenging him!

 

Kezzy sure loves his aunt Julie and cousins! I'm glad they have a special bond even if it was so hard on us to leave him behind when we first went to Texas.

While we were in Utah and in between Marshall's transplant work ups we also had a small birthday party for Kezman since we won't be able to do that afterward. I was so glad that Grandpa and Grandma Reese were able to join us for the occasion.

 

 

 Special thanks to Brielle for making such a cute Thomas the train cake! Kez loves trains! Marshall couldn't wait and put up the train banner in the morning and when Kezzy saw it when he woke up he was ECSTATIC! Shaking and pointing all day saying Choo Choo mommy choo choo! Also thanks to Sterling who helped Kezman blow out his candles. Kez is my careful boy when it comes to things like eating cake and blowing out fire and I am just fine with that. So glad we were able to celebrate with family and friends there and can't wait to celebrate on an even smaller level again.                

We have amazing neighbors in Woods Cross that helped us with our backyard and plant some tomatoes  and flowers the Saturday we were home. I hope they are alive and well when we get back :)!

 One of my best friends who is living in Wyoming but is in the process of moving to Washington state called me late one night saying she was driving to Primary Children's for her baby girl with her sister in law. We went to visit her while she was there and thanks to the Mortensens she even got some yummy dutch oven food that we brought to her at the hospital. Her little girl is great and I am lucky to have amazing mommies to look up to and hope to be like someday! It was also great to see our wonderful friends Matt and Megan, Teri, the Weilers, the Mortensens, and the Goalens while we were home and everyone else I didn't list we love you all!

Well as if we didn't have enough on our plate Melanie and I decided last minute to run the Woods Cross 5K on Memorial day. I am glad I woke up to do it because our awesome neighbor Styles won an award and was giving his speech at the service AND they were raising funds for our wonderful friends in Moore, Oklahoma who's house was leveled by the tornado! I met Chris Goelz at BYU-Idaho and took a trip with him to California my freshman year to visit the awesome Hunter family in Gridley. 

Tyrel was just trying to get more picture of his lovely wife Melanie and I was photo bombing his photos. Ha! Sorry. On top of all that my amazing sister-in-law Melanie loves interior design and is going to change up the house a bit while we are away for the next month. Love you Melanie!!

Well for better or for worse we are now back in Texas. At the moment I would lean toward the worse. We expected Marshall to be in the hospital for 3 days as he starts his second biotherapy regimen to keep the cancer in remission until transplant. They biopsied him agan as part of the study curriculum and afterward they found a rash growing near his biopsy spot. We found out it is shingles and is most likely from his previous donor's chicken pox when he was little. It has been a year since his first transplant now and Marshall has not yet received the vaccinations he will need.  I was glad Kez and I stayed in a nearby hotel while this was going on.

They released Marshall yesterday, but 2 days after he started the BITE again, he was feeling under the weather. They tested him and he's positive for parainfluenza. Kez also started with similar symptoms just a little while after Marshall had them. So today Marshall went into MD Anderson by himself since Kez is not allowed in or near because he is sick while I stayed home with Kez.  Good thing one of us has a good immune system! We were expecting a bag change and blood count review today as usual. They noticed his shingles have spread on his thigh so they are admitting him to give him IV meds instead of just treating it with pills. As I sit here typing he has been sitting in a waiting room for 3 hours. Oh sheesh!