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Friday, March 28, 2014

"All Good Things, All Good Things"

It is so great to be able to make a post about how WONDERFUL things are going right now. I have just GOOD news to share and it feels so amazing just being able to sit here and feel relief and sunshine.

Firstly, Marshall got a promotion! He is now working further away from home and managing more people. I do worry the stress will get to him, but he is LOVING it. He works so well with people and he is finally able to do that again instead of being away from people in his sterile corner of the office. I also received a tiny raise, but hey it's something! Mostly, it feels so good to be able to be responsible and have others depend on us once in a while instead of feeling so vulnerable and needing so much help.

Secondly, Marshall's dizzy spells are gone! How did he do it, you ask? I don't know and I don't think he does either. He got sick with some kind of cold or something we all got and after that they just miraculously disappeared. Yay!

Thirdly, Marshall went into the Bone Marrow Transplant unit for his check up that would have been the very time post transplant that he relapsed last year and his counts were the best they have been since before he was diagnosed in 2012! Woopee!!!

We've had some great family and friends time lately and I LOVE it! Julie and Kaitlin came to visit and it was SO amazing to spend some time with them, Marshall's little sister got married Halleluja!, Brielle surprised us with a visit from new baby Jenson from Kansas and I got some sister time!, and we had a wonderful Music for Marshall event (we will make a better post about that when I get pictures from Cyndi).





Okay, just to share a little love and happiness with y'all. We were able to attend a grand opening for the aquarium with our wonderful Weiler family and Kez LOVED it. He kept standing by the tanks pointing and screaming, "Look at that! Look at that!!"



















I also should hold myself accountable for this awesome program I started with my family called "Simply Great in 8". It's pretty much 8 weeks of as many veggies, water, fruit, and exercise as we can get so hopefully I will get a little more toned (I SO need it)!
Day 1 for the 3 of us

Post Hip Hop Abs work out


Thursday, February 13, 2014

Anxiously Waiting

2nd Transplant Day July 5, 2013
Anxiously waiting are some lyrics from a song Marshall wrote for my niece Ellie. If you'd like to see it click here. Today is Doctor day. Visiting the bone marrow clinic hasn't happened for a full THREE WEEKS! I feel my blood get hotter as I anxiously look up Marshall's blood results.  It seems the closer we get to the time he relapsed last year, the anxiety gets a little worse for me. I am just so grateful that it doesn't happen as often as once a week now. It's every few weeks unless something bizarre is going on with him.
But the labs are good! Again! Phew. I admit it is very hard to forget the feeling of anguish that came flooding over me that fateful February day last year. It has now been 7 months since Marshall's transplant. Last time he made it to 8 months before he relapsed. Do I feel astronomically better about it this time around? You better believe it! For one thing, he achieved full remission in April of last year. Second transplant he stayed in remission in Houston, TX on the biotherapy for 3 months prior to transplant day. The first transplant he'd barely achieved full remission right before transplant from the chemotherapy and radiation.
Just before 1st transplant

Day of 1st transplant. June 1, 2012

It has been a rough adjustment (at least for me) these last few months. Things have been going so well besides Marshall's dizzy spells that happen a few times a day now. We are adjusting to my early morning work schedule and Marshall leaving for work right as I come home so we don't need a sitter for Kez.
We have also been trying to become social again instead of spending hours in the hospital, or having to socialize via technology to avoid germs, or on the computer researching.  Somedays it feels like everyone is so busy with their overscheduled lives that we have not been a part of the last few years. Hey- it's not their fault they went on with life as normal and that we had no time at all for them while we were in the hospital, Texas, and avoiding germs. At least my house is always clean and I am reading 5 book right now. So we are gradually trying to build our lives again now that Marshall's immune system rocks. It's tough because we have been in this spot once before. Last year to be exact. With such high hopes that were destroyed. I am not going to let that stop me from having them again though! "Most people pursue pleasure with such breathless haste that they hurry right past it"-Kierkegaard.
We have many awesome friends who have helped with donations and some were constantly sending me ways that might help Marshall's leukemia. Wowza- I cannot even begin to tell you ALL the different ways people said his cancer could be cured. I will tell you the most outrageous one was my friend telling me he should start drinking MY urine! Ick. (Sorry if you're reading this Arthur). Some of our friends have been trying to go vegan or vegetarian and it's made me think a little about our diet and my studies on nutrition.  As of late, that little spark of interest I had about international health I have been holding on to inside, maybe even expanding a little through my cancer research, has been ignited once again. I do have a goal to study international health for a graduate degree. Working for the Global Service Center is definitely a step in the right direction too. 
So many days we just don't want to be 'the cancer family' anymore (sometimes we wonder if that is why people don't want to socialize too). We discussed seriously if we should move to Arizona without Marshall finishing his degree. But the fact of that matter is, he wants to finish his degree first. So, while I am here I am determined to make the most of it and be involved in making my surroundings in Utah and my home better. My scientific mind constantly wonders what caused the leukemia in the first place. Refineries? Bad air? The wrong food? Stress? Genes? Bad water? Chemicals? Chance? There are SO many possibilities. So, I am starting with nutrition that I studied back in college on my new blog To Our Health, Future, and Bettering Our World.

Wednesday, January 1, 2014

2013 Synopsis

2013 In A Nutshell



Back to Work!

Jan- AJ starts working at the Global Service Center. Whole family contracts rhinovirus and Marshall has to be treated in the hospital and stay away from Kez and AJ for 10 days. Hence, the song Ten Days was born.

Yes we both fit in the hospital bed just fine
 Feb- Marshall starts having terrible back pain and goes into the clinic- his leukemia relapses :(. AJ has surgery to remove a cyst on her forehead. Turns out it's not a cyst, but it was extra brain all along :).
Chemotherapy makes you tired


March- After treating MJ with chemo for a month they tell us there is nothing more they can do, that the cancer is resistant to chemo. Elder Corbridge from the Seventy pays Marshall a special visit in the hospital and blesses him. We decide to go to MD Anderson Texas for a trial bio therapy drug no matter the cost. We leave Kezzy with his aunt and uncle and cousins in Sandy :(.

April- AJ runs first 10 miler down Emigration Canyon with sisters Melanie and Julie- we fly to Texas the next day and she walks around MD Anderson like an old lady. Who's the patient here anyway? Thanks John and Sherilyn for allowing us to stay with you in Pearland! Melanie and Tyrel move in our house while we are in TX. 2 weeks into the trial we find out Marshall is in remission! Miracle!! We watch Music for Marshall at Tucci's, a fundraiser to help with medical expenses, via live video feed. Thanks Cyndi! AJ spends 28th birthday in the hospital with Marshall (much like 27th birthday). Landon Cooper from Miles 2 Give runs for Marshall. You can buy the song Marshall Jensen wrote on I-tunes called Miles 2 Give.
Landon surprises Marshall after we get home from Texas
Selfie
Running!

OUCH! 




May- Lucile brings our Kezzy to us in Texas!! He gets to see Houston aquarium, zoo, and kid's museum. Julie writes an essay and AJ wins a Mother's Day makeover from Lunatic Fringe. We surprise family and fly back for the Miracles for Marshall event in Pocatello. Our house turns beautiful while we are in TX. Thanks Melanie and Matt! AJ worked hard too.



Happy Mother's Day!


June- Kez turns 2!! AJ donates her eggs to a family who have been trying for years to have children. Have to give forward after all we've been given! We fly back to UT the day after donation. Kez is potty-trained.
I'm 2!
Thomas the Train cake made by aunt Brielle


July- 5th is second stem cell transplant day for Marshall. With a slip of the delivery guy we find out his second donor is international!
Aug- Kez and AJ fly to San Diego for Sam and Vanessa's wedding. Marshall turns 29 and AJ takes him to a Dave Matthews concert in our ponchos. 30 day check-up says MJ is still in remission. Tyrelanie move out.



Oct- Add our sweet little black toy poodle Jazmica "Jazzy" girl to the family- best.pet.ever. Booker turns 1. 100 day biopsy is also still clean.















Nov- 4 year anniversary celebration in a beautiful canyon up north. We see a bee monastery.

 

Dec- We sing at the Conference Center Theater when the First Counselor of the Presiding Bishopric speaks. Grandma Reese passes. Marshall celebrates 10 years at Lexington Law Firm. 
We miss you Grandma!


Here's to a New Year and hopefully more security. Cheers!





Thursday, December 12, 2013

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 GreenLooking 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.


Sunday, November 3, 2013

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. 

Saturday, October 19, 2013

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 ;)