Monday, October 17, 2016


If you follow me on Facebook, then you most likely saw the exciting news that I RAN TEN MILES (not a 10K, that's "only" 6.4 miles) on Saturday. TEN. MILES. The farthest I have ever run before - and, honestly, the fastest that I've run several miles. I never thought I'd say this, but it was awesome.
[and my time was, like 2:01 - I didn't get to the start line until 10+ minutes after the run started]

With the completion of 10 miles, I might as well tell you all: I AM TRAINING FOR A HALF MARATHON. That's right, I am purposely going to run 13.1 miles. My friend & running partner, Karen, and I are going to run the Disney half marathon the first Saturday of January (at Walt Disney World). We are running with Team in Training, the fundraising arm of the Leukemia & Lymphoma Society.

I first heard of the Leukemia & Lymphoma Society's Team in Training over ten years ago when a friend from college was training to walk a half marathon. Good for her, I thought - followed quickly with, I don't think I'll ever do that.  Over the years, I would receive postcards in the mail about training events starting and muse on the option. Ultimately, the postcard would find it's way to trash.

A couple of years ago, a student walked into my office at the University of Arizona extremely passionate about LLS. His daughter was diagnosed with a rare form of leukemia and the Leukemia & Lymphoma Society played an instrumental part in supporting his family through her treatment, which included a bone marrow transplant. Ben's energy was contagious. He was so committed that he planned to switch careers (hence his return to being a student) from investment banking to family studies/human development. It was at this time (May 2015) that I thought I could connect student development opportunities to the LLS mission.

In June 2015, Dan was offered his dream job at Michigan State. We made the decision to move and packed up in less than 2 months. The day we prepared to move from Arizona (July 28, 2015), we received news we never saw coming: Dan had T-cell lymphoma caused by the Epstein-Barr virus. We learned it was "Stage 3" - effecting lymph nodes in his neck and spleen. Later that fall, the abnormal T-cells were found in his spinal fluid.

Through it all, Dan had the best attitude. Continuing to work, plan, laugh - and LIVE even though treatments interrupted the schedule every few weeks. He viewed cancer as an inconvenience.

In January 2016, he was diagnosed with another disease, HLH (hemophagocytic lymphohistiocytosis) - even rarer than the cancer. He was declared in remission from the lymphoma in February. Long story short: the lymphoma came back with a vengeance in early July, and Dan passed away within 48 hours.

That week before he passed away, I had come home after a run - my longest so far this year (45 minutes). I was chatting, and wandering around the house, and he was lying on the couch (his back had been causing him severe pain for weeks). He reached out his hand to stop me. He pulled me to sit down next to him, and he said, "I love you."

I said, "Why do you love me?"

He said:
I love that you run. 
I love that you have dance parties in your office.
I love that you are doing things - and living life - because I can't.
I just love that you live.

So, I run ... not because I love running; but, because I can.

I am running a half-marathon because I am a good friend - and this is one of Karen's bucket list goals. We are running the Disney half marathon because if you're going to run a half marathon, why not run at Disney?

I am running with Team in Training because I want to support the research done for blood cancers. Cancer treatment options have come so far in the last 20 years; Dan was the recipient of good medicine and great care. I hope that together we can support even more advances so that those facing a diagnosis still experience the fullness of LIFE in the midst of treatment.

Karen and I have committed to raising $5600. Please join our team to cure blood cancers! If each of my 280 friends reads this and gives $20 - we are at our goal! 78% of each dollar raised goes directly into funding LLS research and providing financial assistance to families struggling with the cost of treatment. To support the cause for a cure:


Friday, September 16, 2016

What to Say

Haven't we all been there? Someone we love is hurting, and we want to take away the pain, and we feel a deep need to say something but we suddenly have a keen awareness that nothing we can ever say will come close. The result:


That had been my default. I realize now that I have stayed silent in the midst of some of my friends' personal tragedies because I knew my words could do nothing. [and if my words can do nothing, what do I have to give?] [and for that, my friends, I am sorry; I am sorry that I was absent from your time of pain because I was so focused on myself and my inability - that I failed to just come near and be a friend to you]

Two months walking in the valley of the shadow of death has taught me one thing:

the grieving do not expect your words to do anything.  
So, stop worrying about your words so much. 

The best thing that you can give to the grieving is ... your story of their person. 


Tell them your favorite memory; tell them how you met; tell them the impact he had on you no matter the length of time. ...and, if you don't have a story, you should ask them to share theirs. The grieving have a lifetime of memories that we never want to lose...and yet, we may not want to become "those people" who just keep bringing up the dead. [Note: I am going to be one of those people. Dan-stories - us-stories are my favorite. So, just suck it up, friends, and listen.] (also, I know you will; I'm "just saying.")

What I want to hear from people, especially now, is their story of Dan. ...and what I REALLY want most from people, especially now, is their story of us....because, I haven't just lost Dan; I've lost us. And, if you know me at all, you know that my deepest heart desire is that my life positively influence others - and that extends, especially, to my marriage.

If you attended Dan's funeral, you might remember Father Mark saying that the hardest times for me will be coming. When I say "especially now" - I mean, "especially now." The shock is finally starting to wear away; the feeling is coming back from the numbing impact of Dan's death. Many people have been processing the absence of Dan for two months - but, it is just now starting to settle into my reality.

...and it sucks.

So, I'm going to need more hugs than I did earlier. If I'm crying, just let me talk about whatever my feeling is at that moment that is making me cry - and do not feel any need to try to talk me through the feeling or reason with me. Just let me share the feeling while I cry. ...and those stories - share those stories, my people.

Tuesday, September 6, 2016

What grief is like, part 2

The first time I fully felt the trauma of grief, I was in a yoga class in sunny, southern California. I was 2.5 weeks into this...[can't find an appropriate word so we'll leave it at "this"]. At the time, I was still very much feeling the tangible cupping of God's hands around my whole self - just like we might hold a tiny bird that has fallen out of its nest. I hadn't yet experienced the "sadness that just sits on your heart"...though I had moments each day that I cried. Honestly, God gave me a very blissful period where He literally flooded my world with light, life, love, and hope. I call it "buoyed by hope" (which is going to become the name of this blog, btw).

Anyway, I was lying on my mat as we started class, and the instructor began (like they all do), with: "Now, let go of the tension in your body...."

I felt a visceral panic at that phrase: let go. [I still do; word to the wise: don't ever tell people to 'let go' of their dying person. I didn't know how to then, and I don't now - and that just isn't the right phrase. Maybe it's me and I am just sensitive to words, but please, don't use that phrase with me.]

I realized that the tension I felt in my body was what was holding me together. The idea of "letting go" scared me. I felt like that if I lost that tension, I would be losing Dan all over again - and the idea of having to endure that again caused panic. [all while I'm just lying there and breathing; minds are powerful things]

As I moved through that session, I started to notice all the areas that I hurt, that were tense. My quadriceps, especially, seemed to ache with the poses. They'd never hurt before like that. My heart just kept wishing that this time could be over because I just couldn't do it - I couldn't confront this beast of tension...I couldn't slay the dragon of despair that had stolen my love.

I began to feel all of the trauma that my body had endured. ...and it took my breath away. During the final relaxation sequence where you relax your body into corpse pose (lying still, focusing on breath), I felt as if I was moving. Though lying completely still, I felt as if I was lying on a hammock blowing in the wind. [It was so weird]

As we left, I just couldn't shake that "woosy" feeling. I felt so disoriented - like I need to sit on the ground. When we returned home, I grabbed my journal and immediately went outside to sit on the ground, against a tree trunk...and.... I prayed. I cried a bit. PJ came outside and I asked her for a hug - and I feel like I just collapsed. I sobbed. Dan's death had just happened so fast, from out of just happened. So fast. From out of nowhere.


That day I took a nap and woke up feeling like I had literally been driven over by a truck. The next day - same thing. In fact, for the past month, my entire body has hurt with pain. For a while, I woke up with headaches every morning. My shoulders ached. My quads could find no relief. I visited my chiropractor weekly, had two massages, went to gentle yoga when I could. I took Aleve; I slathered on BioFreeze; I used the heating pad.

The breaking point was last Wednesday. I just couldn't take the hurt any more. I felt exhausted physically, mentally, emotionally. The best way to describe it is like a rag that has been completely wrung out. Picture the rag still in your hands in that twisted motion: that is what grief feels like.

Now: praise be to God, the next morning I woke up and I didn't hurt! I have woken up the past few mornings and not hurt. So, so thankful!

Monday, August 29, 2016

What grief is like

A couple of weeks ago, during my morning quiet/prayer time, God gave me a great picture of what grief is like.

That week in particular, I had just felt that nagging sadness hanging around. Sometimes, the sadness creeps up in the morning - a lot of times, it's just after lunch. Right after I've had a round of conversation and laughs with my friends...and this giant *sigh* rolls into my life. I didn't understand how I could go from one moment of enjoying life to one that is just...heavy. 

It's not a particular thought that triggers this heaviness; it's like I am suddenly aware of its presence.
"Hi. I've been around all day. You should feel sad. You should feel empty. You should feel tired."

Sometimes, I fight it, but I try to just feel it. I might close my door and cry; or go for a walk and cry - or do something and cry. Crying helps.

I like to understand my feelings. (that's one of the reasons this blog is basically about feelings. I'm sorry I'm not a better documentarian. I do fun stuff, too. Really.) So, on a Thursday morning while I was praying the Rosary (which has been an amazing comfort), on what had been a clear morning - I opened up my eyes and saw this:

A fog, out of the blue, just started to roll in. By the time I was finished (which is about 25-30 minutes) - there was this:

By the time I left for work, there was a dense fog covering everything.

And I just thought, "Yep. That is what grief is like." I have moments of such clarity. Profound clarity - purpose and peace. Moments of joy. ...and then, just moments of grey. Where the joy of a moment ago has been clouded over with heaviness.

I did a search for "fog" in the Bible - and there are no references. There are, however, quite a few for clouds. I thought these verse from Psalm 18:9-19 are most appropriate. If anything...grieving is one the most profound opportunities for us to turn to God and truly discover how near He is to us - how closely He desires to be to us - nearer than a brother. Seek Him while He may yet be found. He wants to fight for you.

He parted the heavens and came down;
    dark clouds were under his feet.

10 He mounted the cherubim and flew;
    he soared on the wings of the wind.
11 He made darkness his covering, his canopy around him—
    the dark rain clouds of the sky.

12 Out of the brightness of his presence clouds advanced,
    with hailstones and bolts of lightning.
13 The Lord thundered from heaven;
    the voice of the Most High resounded.[d]
14 He shot his arrows and scattered the enemy,
    with great bolts of lightning he routed them.
15 The valleys of the sea were exposed
    and the foundations of the earth laid bare
at your rebuke, Lord,
    at the blast of breath from your nostrils.
16 He reached down from on high and took hold of me;
    he drew me out of deep waters.

17 He rescued me from my powerful enemy,
    from my foes, who were too strong for me.
18 They confronted me in the day of my disaster,
    but the Lord was my support.
19 He brought me out into a spacious place;
    he rescued me because he delighted in me.

Thursday, August 11, 2016


One month.

I can't even really begin to bring my mind to focus on the fact that I lost Dan a month ago. Today, the heartstrings are raw. The emotions are fresh. Today, sadness comes at me stronger than most days.

I was looking through Facebook to find a picture Dan and I took a year ago, and I just saw all of these images of our life from the past year - and the tears flowed fresh. God has protected my heart so much in the last month, sheltering me in his wings, holding me in his hands - allowing me to only feel an allotted amount of sadness each day, and a whole lot of joy and love.

I can't even begin to wrap my mind around the loss of Dan. There are moments where I don't even feel I've lost him, at all; the physical connection is lost, but the spiritual one more enhanced. My friend: I miss my friend so much. There are questions that come up in random conversations that I know Dan could answer, but I can't ask him. My Shining Steed: always reliable, ever loyal, so good to me.

Seeing pictures from the past year calls to mind how much life we made in the last year. A year ago today, I interviewed for my job. Today, I mourn for what we won't get to do together as the department power couple. (our joke) He was so excited to contribute to the Michigan State livestock judging program and establish it, once again, as a strong program; to give students something to aim for, to build their college experience around. I was excited to help him make it a reality. I was (and still am) excited to be able to contribute to the future of a program (department) that had played such a fundamental role in Dan's development as a person and professional - and in the lives of his closest friends.

Working with him was, honestly, a dream come true for me. He would joke a lot about having to work with your wife, but - I know he enjoyed it. He was proud of the work that I am doing here, and I love that I got to share that with him.

I look at this past year, and I think: we lived. We fully lived this year, and we made a life here - even in just a year.

My biggest fear a month ago was, "how will I live without Dan?" I don't mean the daily tasks of life - I know how to pay bills, cook meals, etc. I mean, LIVE - be present; enjoy the moment; love the day. THAT is what Dan taught me to do - to not worry about tomorrow, but to seek first this day: to live. When I expressed my fear to Deacon Wayne that day, he said, "Oh Jessica, you are a better student than you give yourself credit for. I think you've learned that lesson."

That, along with so much grace from God - and frequent surprises from Dan, have allowed me to LIVE this past month. There are moments that are sad, that are hard, that are good. There are moments where I cry and moments where I laugh; moments that I feel all the things, and moments when I just "am." Every day, I ask God to help me feel what I need to feel in order to heal. He does.

I've mentioned on Facebook that Dan gives me songs. Here's Month 1 Playlist:

1. You are so good to me - Third Day
2. Friends in Low Places - Garth Brooks
3. Barbed Wire Halo - Aaron Watson
4. Don't Fence Me In - Gene Autry
5. I'll Be Here For You - Randy Rogers Band
6. Crazy Love - Van Morrison
7. Rocket Man - Elton John
8. The Road Goes on Forever - Robert Earl Keen
9. Learning to Fly - Tom Petty & the Heartbreakers
10. I Turn to You - Selah

[Okay, I feel better. Thanks for listening, world.]

Sunday, July 31, 2016

Love and Marriage

One of the unexpected blessings of my trip west was the chance to celebrate with this couple their 50th wedding anniversary and renewal of their vows today. Who are they? My great uncle and aunt, Bob and Ruth Kremer. Bob is the youngest of the Kremer clan - my grandpa Joe's youngest sibling (mom's dad).

Their daughter Karen gave a beautiful tribute to them, describing them/their marriage as an example, as teachers, and inspirational. She cited their daily walks holding hands, their time spent preparing couples in their parish for the sacrament of marriage, and the way they look at each other while listening and speaking as examples.

There is so much that I love about this picture...but, I think what I love most is that it speaks to me of a legacy of love. I hear their story of faithful love, fidelity through trial, friendship, faith, hope, and prayer - and I instantly think of stories I heard about Chuck and Tillie (Temeyer), Jerry and Rita (Kies) [grandpa's sisters] at their husband's funerals - and of my own grandparents. I think of God's promise to Moses and the Israelites: to those who love me, a thousand generations will be blessed. 

I have been so blessed and touched by many of you reaching out to me after Dan's death. [I hope one day to actually write to each of you personally; today is not that day.] Many of you have mentioned how blessed/lucky he was to have me (and I feel the same) have cared for him - and I honestly can only say: I learned from the best.

I have had a faithful cloud of men and women witnessing to me the sacrament of marriage my entire life. They teach me everyday...and "I'm a better learner than I know; I learned the lesson."

Just a couple of months after we started at Michigan State, a graduate student (and friend) commented about how Dan and I seemed to be one of those couples who defied the odds; who could work together; who have that mystical "it." It surprised me at the time; I couldn't see it. We had problems; we fought; we didn't always see eye-to-eye - we're human. But, we trusted each other; we had that easy confidence that comes from knowing you are well loved - and we generally really liked each other's company. While I have many friends - and several, special close, heart-friendships; Dan was my first best friend. And, I think he would say the same about me.

When we were first working at the University of Arizona, we had a short walk down an alleyway from the parking garage to my building. I made him hold my hand. When we got to my building, I made him give me a kiss. He protested at first, saying, "Jessica! What if my students see me?" I said, "Good. I hope they do. They need to see a good marriage lived out."

He, too, is a good learner. He lived the lesson well.

There is no limit to love's forbearance - to its trust, its hope, its power to endure.
Love never fails. Prophecies will cease; tongues will be silent; knowledge will pass away. Our knowledge is imperfect and our prophesying is imperfect. When the perfect comes, the imperfect will pass away. When I was a child, I used to speak like a child, think like a child, reason like child. But when I became an adult, I put childish things aside. Now we see indistinctly, as in a mirror; then, we will see face to face. My knowledge is imperfect now; then, I will know even as I am known.
There are, in the end, three things that will last: faith, hope, and love. The greatest of these is love.
[1 Corinthians 13]

Friday, July 29, 2016

Grief Stages

I have received much encouragement about my writing from "my people" over the last few weeks. So, I have wanted to get back online and let you know how I am doing. I'm currently in California, staying with family: who cares about bloodline, we are connected by heart.

I've decided that I will document my process through this - like I've already been doing - and hopefully, God willing, that will not only help me, but you. I have to let my thoughts out somewhere, and God has given me a voice - so I will use it.

I just finished reading my first book on grieving: "Grieving - our path back to peace" by James White. It's a good, short read and I would highly recommend it. I'm a first-born, so I have a need to "check myself" according to norms. I have a need to know what to expect; and I have a strong desire to make sure that I am doing things "right".

Now: I know that several of you will now comment that "there's no wrong way to grieve" and "everybody's different." True. But, grief is a process that all humans are faced with, and over time, counselors have observed that though expressed differently, there are similar parts of the journey to healing/acceptance. And, if stunted or suppressed, a process that could lead to healing can instead lead to brokenness. (which is exactly what I don't want)

Everybody starts with numbness/shock - and I didn't know this. I had asked my cousin a few days after the funeral if it was normal that I didn't feel sad all the time, that I felt normal - even full of peace at times. Her response was: "Yes, God is protecting you. God is showing you that you can and will feel this way, again."

One thing I appreciated about the book was the author's emphasis on "spiral" - not steps. The concept of steps indicates that you move, linearally, methodically, sequentially through the emotions. So, your process through grief is a checklist. But, it's not. And if that's your expectation, when you circle back to an emotion again, you'll become upset with yourself and your progress (at least I would). So, in a spiral, you will come around to certain feelings again - as time progresses, but the aim is that you are leading to acceptance and hope - not bitterness and despair.

I am already feeling the spiral. There have been moments of emptiness, of irritability, of guilt/questioning, of sadness. Sometimes the sadness just feels like a weight on my chest. Sometimes I hear a song and I think of Dan and I am both happy and sad: bittersweet.

My prevailing feeling, though, has been completeness. I feel so full, so loved, so at peace - more of the day than not. I have my waves and my moments with the spiral - and I fully understand that is normal and that it can (and probably will) increase and be harder...but, I am so thankful for God and my people. I have much more to say - but, first: lunch!

(to keep you hanging on for more, dear readers) ;)

Tuesday, July 5, 2016

Jessica's random heart

Well, I'm about to ruin my mascara - and probably yours, so you're welcome in advance. [Why do I even wear mascara? It's just giving me a forewarning that I'll cry later in the day.]

I started a CaringBridge site for updates about Dan's health because we've finally embraced the fact that we are going to be moving forward with a bone marrow transplant (either a research trial (3rd party) or allopathic - from a donor - his sister). There will be lots of specific prayer requests that I will throw out at you, our fantastic support system. And, I hope you know that I don't say that as lip service; truly, every time you pray for us, we can feel it.

As I worked on just writing out our journey the last two years, I am honestly overwhelmed - overcome with emotions ranging from gratitude to shock that we haven't simply survived. In the midst of some crazy chaos, we have thrived; and, I think - well, I don't think - I know, it's because we know the Calm of the storm: it's Jesus.

When I think about just the past year and all that we have endured... I have no words. Shock and awe.

It took meeting with our bone marrow doctor ten days ago for us to finally realize that we have been living in a cycle of sickness for A LONG TIME...and that the transplant, while very scary, is our best option for breaking that cycle. For a while, I think we both thought that we could do it - we have done it for years...but, at what cost?

Many of you have commented over the year about my strength - and I thank you for that. I find strength from lots of you, and from Dan, and I have a model of great strength. My grandma Ellen cared for my grandpa Joe for 3 years while he was in kidney failure, and I don't know how she did it. Now that I have lived this journey, I have such profound respect for her. These are not easy tasks, but we do them because we can't imagine any other way. We don't know how to not do it, to not give, to not love, to not wear ourselves out in the caring for the person we love most.

While we certainly don't do it perfectly, and each day is its own battle with a cross to bear... we continue to press on because that is the way forward to life. We may cry, but that is where we find release. I find such healing from my tears. I am not ashamed to cry or to feel so deeply.

But creating this site was a really big deal for me, you guys. I'm admitting that so much bigger, so much more serious than I live my life thinking. I kind of have this thought that these sites are only for the serious, life-threatening things...and to admit that this is where we are - damn, you guys! "I can't even" put it into words.

Also, I'm really quite disappointed that I can't customize the site more. The "cover page" (in facebook language) options are so super lame. What I WANT that part of the page to say is this because it's my mantra right now:

Blessed be the God and Father of our Lord Jesus Christ, the Father of compassion and God of all encouragement, who encourages us in our every affliction so that we may be able to encourage those who are in any affliction with the encouragement with which we ourselves are encouraged by God.
For as Christ's sufferings overflow to us, so through Christ does our encouragement overflow. If we are afflicted, it is for your encouragement and salvation; if we are encouraged, it is for your encouragement, which enables you to endure the same sufferings that we suffer. 
Our hope for you is firm, for we know that as you share in the sufferings, you also share in the encouragement.

This is what it's all about for me. In the last year, God has become so much closer, so much more tangible to me through this affliction and suffering. To think how far off from him I was then, and how much more there is of His heart for me to know...I am only on the far edge. I am closer than I was, but still so far from really grasping how wide, and high, and deep is the love of Christ Jesus for us.

I gather strength and encouragement from those who have walked the road of suffering and affliction before me; who have endured the pain of seeing their spouse suffer...they have given me strength to do this...and that will overflow into the hearts of those who walk with us. We are the body of Christ - and we must journey together if we are to find healing and wholeness.

Thursday, May 26, 2016

Marriage Advice and Expectations

Well, on Sunday, we mark 5 years since saying, "I do" to the list of items we vowed to be together through. Not simply together, though; not simply by each other's side...but, to grow together - to become one through good and bad, rich and poor, sickness and health. As we close in on 5 years, I finally think I have some advice to offer. (Maybe.)

Some time after getting married, I read someone's blog post about marriage advice. She is a Christian woman whose opinion I respect, who'd been married for about 16 years at that time. She had been given this advice and she thought it quite apt: "Have no expectations."

I read that at a point where I was having some type of a struggle with this whole marriage-thing. Don't get me wrong - marriage is the best thing that has happened to me...but, there were times during our first 4 years that it also felt like the worst. Sometimes more of "the worst" than the best, to be honest. It seems so overused to say marriage is "the best hard thing" because sometimes the hard feels SO. HARD.

When I read that post, my first - and pervasive question was, "BUT HOW?" HOW do you have NO expectations? Isn't that the natural thing? To have expectations? To expect something? I just didn't get it. If you don't have expectations, why are you getting married? Don't you want to get something out of it?

...and that, is why the first four years were hard. Because I was way too focused on myself - and what I was getting out of this whole deal. How is this love?

Regarding expectations, I think the first thing a couple should do is examine the role their in-law plays in marriage. As a wife, what role does your mother-in-law take? That is going to be your husband's unspoken expectation of his wife. As a husband, what role does your father-in-law have? That is going to be your wife's unspoken expectation of you. ...and those unspoken expectations are some things that you, as a couple, will have to discuss and address, in your becoming one.

For us, our budget/bookkeeping brought this to light. We were on our honeymoon when our differing expectations started to come to light. After paying for our dinner, Dan handed me the receipt. I balked. What was I supposed to do with this? Why did I need this? He said, "Well, don't you want it, so you can keep track of it? For the budget?" Oh. I didn't realize that was going to be my job. I thought it would be his job!

The other area of expectations that you have to deal with is comparison to others' relationships. I struggled for a long time comparing Dan to my friends' husbands. It certainly wasn't helpful for my relationship with him. Who wants to feel like they don't measure up? In what way is this fair? Moreover, though, in what way is that love?

For me, the greatest lesson I have learned in marriage is how to love. Regarding expectations, I would advise that you currently have no idea how much you don't know how to love. You will be stretched. You will be tried. If you're doing it right, you will be broken. And, really, it's not you who will be broken - it's your expectations. It's your idea of love - and how you thought you were able to - maybe even good at - loving.

The greatest gift I have been given is an immensely patient, gentle, humble man, who is willing to stick with me through life. He isn't perfect; no. But, he has born my inadequacies, infirmities, insults. He loves me through them. He loves me. The greatest gift I have been given is the real experience of living the Sacrament. Marriage is a Sacrament because it's a revelation to the world of who Jesus is; how he loves us, and we love in return. When Dan has born my shortcomings and sins, and loves me anyway, that is a picture of how Jesus loves me. He tells me that I am more than what I do (or don't); I am more.

A lot of people mention the trial of this past year for us. To be honest, this was the best thing for us. I needed something major to snap me out of my self-serving spiral. Spiritually, I was out of touch with the love of God; keeping him at arm's length; afraid of getting too close; afraid of being changed too much; afraid of yielding control. God has saved me through this trial because he showed me how to LOVE Dan.

It's taken 5 years, but I am finally learning how to respect the man that Dan is, to love what he brings to the table - and together we figure out how to overcome our faults. It's taken this life-altering event for us to recognize the gift that each day is, and the gift that each day we have together. Marriage is one of the greatest gifts that we are given - if you are ready to be emptied of yourself and to love another as more than yourself.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
13 And now these three remain: faith, hope and love. But the greatest of these is love.  
[1 Corinthians 13]

Thursday, May 19, 2016

Catchin' up - or "PCP - yeah, you know me!"

So, an update.

You know, I don't quite know where to start - or what exactly to say/share because "our story" continues to unfold - but, I should at least explain all the things that happened in April with Dan.

Sometime this 'spring' (I think in semesters, so spring starts in January) late February? - Dan got the results from a spinal tap and it came back clean. This means that Dan is "cancer-free." There are no more abnormal T-cells in his blood.

His weekly chemo that he was receiving was for the HLH - hemolymphiophagocytisis (or something like that). The HLH was the disorder that our doctor diagnosed him with in early January. When Dan's lymph node was removed July 2015, the doctors thought either Dan had lymphoma or HLH. Part of his treatment for HLH, in addition to the weekly chemo for 8 weeks, was to be on a steriod. In January, he was taking (I believe) 4 steroids each day for 2 weeks, and then that number was weaned by 1 pill, every 2 weeks.

In February, we met with a team in Pediatric Hematology/Oncology - because HLH mostly affects children (as a genetic disorder). They ran several tests to determine the nature of Dan's HLH. Dan is one of the oldest cases of HLH they've seen. Usually someone who develops HLH later in life has an underlying immune disorder which leads to the body's immune system "flipping" and turning on itself. The "good news" was that Dan does NOT have an underlying immune disorder. So, the only cause the team could identify would be chronic, active Epstein-Barr virus.

In early March, Dan's weekly chemo treatments ended and he started receiving chemo every other week. At that time, our doctor had wanted to cut Dan off of the steroid, but his fevers continued. So, she had him just stay on 1/day. The risk of being on a steroid 'long-term' is the development of pneumocystine pneumonia (PCP). To prevent this, our doctor prescribed Dan a monthly treatment of some drug meant to prevent the development of PCP, which he received with his chemo.

His last chemo & PCP-prevention treatment was March 25 (Good Friday). On Easter Sunday, he had a slight fever - but we didn't think much of it - and chalked it up to an active Saturday + chemo (the day we celebrated Easter with the family). That week was a very active week for us. Thursday and Friday marked the start of the Michigan Beef Expo, which is held in the MSU Pavilion. Dan spent several hours there both days. Friday, he spent the day mostly in the arena for the livestock judging contest (which has several inches of dirt).

Saturday, he had a slight fever. Sunday, a fever. Monday, a fever. He had a cough (not productive). On Monday, he walked up the stairs and was out of breath. On Tuesday when I got home from work, he mentioned he was having trouble catching his breath. But, he didn't want me to call the doctor. So, I didn't. [things I would do differently]

Tuesday night, he couldn't sleep because he was coughing and just couldn't catch his breath. Wednesday morning, I woke up to him sitting in a living room chair saying, "I want to go to the ER." Ok! We called UM, and the doctor there was concerned about Dan's ability to breathe and did not want him making the trip to Ann Arbor - so we went to Sparrow.

He was immediately given oxygen and ordered to be admitted (which finally happened 10 hours later). They started treating him for pneumonia (but not PCP). I was in contact with our doctor (McCoy) at UM; she was immediately concerned it was PCP. I said something to the ER doctor about being treated for PCP - and was blown off. His response to me was something like, "We'll start treating him for pneumonia and maybe on Friday, we'll test for PCP."
[yep, happened to be prophetic]

Thursday-day, Dan had a good day. He seemed to be responding. He didn't sleep well Wednesday night because he had a roommate (also named Dan, also had pneumonia). Dan gave me his blessing to be at work. That evening as I was driving to the hospital (which is about 10 minutes from campus), a wave of fear just spread over me. I knew that something was wrong - and I was scared.

I got there and Dan hadn't been able to catch his breath for 45 minutes. He told the nurse, but she had done nothing about it. I got the nurse to come back and she called the doctor who ordered more steroids to try to get Dan to relax. By the time the night shift nurse came (about 2 hrs after my 'fear feeling'), Dan's heartbeat was erratic.

The next few hours were a cluster of activity. More oxygen, different masks, pulse taking, EKG tests (or something), drugs to put his heart back in rhythm. Prayers. Lots of prayers. When I finally left the hospital, I felt like things were stable, but I didn't really know what was going on. I was scared, though. That drive home was a prayer, pleading for Dan's life.

When I got to the hospital that morning, Dan's heart was style out of rhythm because his breathing was still erratic. That morning, an infectious disease doctor came in (a first) to get Dan's history. [Now, on Monday of that week, we visited a naturopath who said that Dan had some time of fungal infection.] So, I asked him, "If Dan has a fungal pneumonia, is the medication that he is on treating that?"

"Oh, no."
"Well, our doctor at UM is very concerned that Dan has PCP." (I also learned that morning that no one from Sparrow had called Dr. McCoy, despite of the fact that I'd given her number to multiple doctors).
"Oh, well, PCP is a fungal pneumonia - and what he is on will not touch a fungal pneumonia. I will change his medicine." [I had no idea that PCP was a fungal pneumonia until this moment]

After his visit, I finally felt like we had someone in our corner. Finally, God was sending us an advocate (besides Mary and St. Raphael and God the Holy Spirit). Dan seemed more stable as the morning went on - and the plan was to switch him to a different mask for a couple hours while he napped (after he ate lunch).

So, I was going to go to the office during nap time and grab some things Dan wanted. I don't think I was at the office 15 minutes before Dan's mom called to say that they were going to move Dan to the Critical Care Unit (also known as ICU). Moving him to the mask caused his breathing to become extremely erratic. The nurse (who was phenomenal) had said earlier that if Dan got worse in any way, they would move him to CCU immediately to prevent the situation from becoming more critical.

I called my mom to let her know. This was the first time since Dan's entrance to the hospital that she cried on the phone with me. I don't know how she does it, but she seems so stoic emotionally when we talk - which lets me feel okay to "let it go"...but this time, she wasn't - and it helped me grasp the seriousness. I then called my dad who was on his way to Michigan to be with me; for the first time (since the hospital visit), he prayed with me on the phone. He wanted to make sure that I was okay to drive myself to the hospital. At the moment, I was.

...and then, I wasn't. I pulled over in a parking lot and started to sob. I cried and cried and pleaded with God to save Dan's life; to heal him; to right this situation. I felt so weak, scared. And, I started to sing. A wave of strength and calm enveloped me; the Holy Spirit was here.

I drove on. A block from the hospital, Dan's mom called to let me know that they wanted to put the ventilator in - but they weren't going to until I arrived. She mentioned something about the tube could be in anywhere from two days to two months.

I got to Dan's room - and a couple nurses were milling around, prepping Dan. His mom had mentioned that Dan wanted to talk to me - but he was in no shape to talk. I got to his side and prayed the Memorare nine times (just like Blessed Mother Teresa says), asked God to send St. Raphael, and a guided 'meditation' of breathing in the healing of the Holy Spirit. Again, I started to sing. The anthem of our week: "Holy Spirit, you are welcome here; come flood this place and fill the atmosphere. Your glory, God, is what our heart longs for, to be overcome by Your presence, Lord."

I cannot describe to you the tangible presence of PEACE that I felt. I knew that we would survive. I knew that in God's time, that tube would come out. I knew that whatever procedures were necessary, God had this. He would allow whatever was necessary - and what wasn't, wouldn't happen.

The plan was to insert the ventilator tube and also give Dan an arterial IV. The arterial IV is the best way to measure blood oxygen. The artery is accessed through the wrist; it's extremely painful to test - so this would make it easier. There was a chance that Dan's heart would go back into rhythm once the ventilator was in; if it did not, then they were going to do a procedure on Saturday where they would have to shock it back into rhythm.

The procedure went well. ...except that Dan woke up during it. His tube was already in, but he remembers waking up and not being able to move and wanting to get the tube out. He did spike a fever after this. I remembered later that the same thing happened when Dan had his I wonder if he slightly allergic to anesthesia?

Through it all, peace never left me. When we visited him after the procedure, he looked like the corpus. (for you non-Catholics, that's the body of Christ on the cross) He had been stripped down because of the fever, but covered with a pillow case - and his body was so white, his ankles crossed, his face flushed. Even then, God's peace prevailed. I knew God had him.

The next morning when we arrived at the hospital, I was floored to learn that Dan was 1) awake; 2) responsive; 3) communicative. We did not expect that. In fact, I had sent a message to Dan's siblings to bring books to read to him. We expected that at least on Saturday - and maybe Sunday - Dan would be mostly in a sleeping/coma-like state. Not at all.

It was a miracle! By the next morning, he was continuing to do great. He was being weaned off the ventilator to breathe more on his own, and the tube was removed around 11am. He had that tube in no more than 36 hours. He was still on oxygen. After two hours, he could start talking and eating.
The first thing that Dan ate was Jesus. Our pastor, Father Mark, visited around 2pm and gave us communion.

Dan spent the rest of the week recuperating and getting weaned off oxygen. He was released from the hospital on April 16 (Saturday). Since then, Dan has just continued to build strength and improve.

On April 29, we had our first visit with Dr. McCoy in a month. His blood work was completely normal! For the first time in 2 years, Dan's white blood cells were NORMAL. As a result, she did not have Dan receive chemo, and she weaned his steroid to every other day.

This past Friday, we met with Dr. McCoy again, and his blood work was still good, still normal. Again - no chemo, and now he's on the steroid every 3 days.

What's next? Well, Dr. McCoy is off for the next 5 weeks (but will still have access to Dan's labs and be in touch). Dan will have his blood work drawn every 2 weeks and sent to Ann Arbor. If it's not good - he'll get chemo. If it is...then, maybe we will try no steroid.

What's going on with the transplant? Geez, that's the million dollar question. It's not sustainable for Dan to be on the steroid long-term - since he's already had the complication with PCP. If he is able to be healthy without the steroid, then is a transplant necessary? This is where we are right now. It's very weird. To me, a bone marrow transplant - with all of its risks - shouldn't seem like a choice - like an elective surgery. That's how it feels right now.

I am content to wait to see how Dan responds to the weaning - especially with how good he's been feeling. Dan is content to see how he's doing. (We're not talking wait it out forever - but the next 2-3-4 weeks) [But] We continue to get pressure from those outside of the decision-making process who would like "to plan." I would ask for all of you [who made it this far in the blog] to pray for us in the next month; that our path would be clear - and that we would have peace - and that we would be firm knowing God's with us, regardless of people's opinions.

Anyway. That's the story.

OH WAIT! That's not the whole story...remember on that Friday afternoon and all that was happening? Besides me feeling the tangible presence of peace (the Holy Spirit)...about the time that I was sobbing in the car, my mom met her pastor to pray. She said that while they were praying in the parking lot, this rushing wind came around them and was moving in the trees - very John 3:8. [This reminded me of a conversation we had with a friend's mom the day of Dan's diagnosis; her first encounter with the Holy Spirit moving was wind.] Then, later that afternoon - about the time of Dan's procedure, my dad felt that he needed to pray at that moment for Dan. While praying, he started to speak in tongues (Romans 8 - the Spirit intercedes for us on our behalf), which does not happen to him often.

So freakin' cool. Our God IS an Awesome God.

Believe it. [or don't; you do have that option]