Thursday, August 11, 2016

8/11

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)...to 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 this...this...is 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)...like 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 lymphectomy...so 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]

Friday, March 11, 2016

'Cause I'm B-M-T!

Please, channel your inner-metalhead and chant this with me:
Oy!
Oy!
Oy!
....'cause I'm B-M-T
DYNO-MITE!
B. M. T.

Thank you AC/DC for defining "badass" throughout my high-schoolhood. This little blast of creativity has helped offer up a more fun way of starting this post than what I've been feeling: "Sucks to suck."

So, anyway, you guys - here's the update you've all been waiting for and I'll cut right to the point:

The hematologist-oncologist and the team of immuno-hematologists have all recommended that Dan have a bone marrow transplant within the next three months.

Yep.

Did you just feel sucker-punched? A blow to the gut?

Because that's how I have been feeling. Our doctor (Dr. McCoy - hematologist-oncologist) gave her recommendation to us 2 weeks ago, and the immuno-team last week. And in spite of all that talk a few weeks ago about being detached from the outcome, I just have had a hard time grappling with this.

Truth of it all: I don't want it. I don't want the 5 days of chemo so intense that it decimates your system. I don't want the month-long hospital stay while we wait to see if Dan's body will accept the new life-force. I don't want the 100 days of in-home care he'll need. I don't want the year of waiting. The second year of waiting. I don't want the anxiety and worry and helplessness that I feel right now to continue for all that time.

I do want healing for Dan; I do want a cure for Dan. But I don't want him to have to endure all of that. I want Jesus to come right now and take it all away. Honestly, right now, I don't even know what to ask for in prayer.

Ok.

So, there's all of that. It's been hard for Dan coming to terms that should everything go well - the recommendation is for him to spend two years not working with livestock.

[yeah. another sucker punch.]

I think that's what makes this all so hard - knowing the risks, and the waiting - and that it will change your life no matter the outcome - makes it really hard to just say, "Ok!" Let's do it tomorrow!

But, every week that we meet with our doctor, we are reminded that this is waiting in the wings, so I guess it's time we let all of you in on the plan, too. 

Tuesday, March 8, 2016

Preach!

This past weekend, I attended a women's retreat hosted by our parish. It was great. Very Catholic - in a very good way. We closed with a woman's testimony (Karen Rutherford) - the mother of our priest, Father Mark. [Yes, Catholics have testimonies.] and Karen brought.it! - if we were more southern, more African-American, and less white-midwestern, we probably would have been yelling, "PREACH!" over, and over, and over again.

One of the key points in her story was that we have got to be on our guard against the devil. She specifically quoted Ephesians 6:10-15. She had us sing "Strong Tower" by Kutless.

and, boy, did I need it today.

1 Peter 5:8 tells us that "our enemy, the devil, prowls around like a roaring lion seeking someone to devour."

Today, I tried a new class at the gym. My friend, Karen (not Father Mark's mom), and I have been going to the gym for almost two months about 3-4 times/week. We've been lifting, running, and getting stronger.

We tried a barre class: specifically "Barre-Be." And that is not an accurate name. It should be called "This will kick your ass, punch you in the gut, and take your lunch money." It was hard. So hard, that about 15 minutes in...I almost had a break down.

I was on the verge of not just tears - a full-on, "I.can.not.do.this. I can't do anything. My life is so hard right now, and the last thing I need is something that is this hard that I have chosen to do" melt down. I was so close to just letting it all go that I had to physically stop, breathe, and ask God to give me the strength - mentally, emotionally, and physically - to keep going.

God helped me. I kept going. I was not going to cry. I'm tougher than that.

Ephesians 6 describes spiritual attacks like this - as flaming arrows. My battle, apparently, wasn't through. After the almost-meltdown (which was during mat-work), we moved to the bar. barre? barre. This allowed us to now have view of the wall of mirrors. [yea - half-hearted/self-conscious cheer]

[Now, I understand that the mirrors are designed to help you work on your form. But, really. Did men design these - or just gorgeous women without body image issues?]

Those arrows were pointed right at my exposed self-consciousness. "Wow. You really should have worn a different shirt. Ugh. Those love-handles. Look at those. Wow. Wow, I am actually the only person here with love handles. Coooool.... Wow. Look at these pants; they really emphasize my thighs. Wow, I actually have the biggest thighs here. Cooool.... Oh my gosh. I thought I was doing so good. ...I am never doing this class again." 

As I changed and tried to sift through this defeated spirit, my first desire was to go to Mass tonight and just get some Jesus in me. I realized that these thoughts are arrows trying to ruin me. But, they don't need to. I don't need to let them.

Paul (in Ephesians) and Peter both exhort - push - us to recognize that we must be alert. We must be on guard. Attacks will come at us when we start making in-roads to becoming the best version of ourselves (walking the road toward holiness and away from self-destruction). An attack is not a defeat (it's actually a sign you are getting somewhere).

Let's remember to utilize our power:

 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.
18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people. 19 Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel, 20 for which I am an ambassador in chains. Pray that I may declare it fearlessly, as I should.  Ephesians 6:10-19

 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.
10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.   1 Peter 5:8-11

 As I drove away from the gym, "Strong Tower" started playing in my head; my sign from the Holy Spirit, that He's got this.

America without mercy is just a-i-a, which is a lot like ay-yi-yi

This message has been tossed around in my head for months now. Months. Since November, when politicians first started swearing to board up the country and refuse Syrian and Iraqi refugees...and I've let it sit here. Sit here, stewing, hoping that at some point the country would be shaken from this bad dream that seems to be gripping us.

Yet, here I still sit, watching a dream morph into a nightmare believing that at some point, we'll wake up - gasping for air, yes - but thankful, it was all a dream.

I have no idea where to start. So, I'll just say this: Lord, have mercy. Christ have mercy.

What is mercy - but a picture of the God's loving kindness (hesed)? His willingness as the father of the prodigal son, who wished him dead, to stoop down and embrace his son? His willingness to reach down low into the muck and mire, risking his reputation, to pull up a child - or even an animal - destined to die unless one reached out?

This is what each of us, whether we embrace the mercy of Jesus or not, has been offered. This is what we, for those who call ourselves "believers" have received. THIS is what we, as believers, must offer to others.

To do so, though, we must first recognize that we are in the muck and the mire - and we are not those on the sidelines helping others out...we are simply extending a hand to our fellow sinner - and together, we grasp the hand of our Father. This is the image God revealed to me on Saturday while I was talking to him about a guy that I don't particular care for (and no, it wasn't the Donald; just a fellow parishioner that I don't even know well - so I'm just being judgy)...and the image I saw was that his hand was necessary for me to even get closer to the surface because he was closer to the surface than me [that's how much I am in the muck].

Mercy is not just between us and God. To be the body of Christ is not just between us and our church or just between us and people who believe like us. To be the body of Christ, we must be showing mercy to every body. We must be willing to risk ourselves so that another might live.

...and what I see from my beloved America is, instead of living the freedom that comes from being the body of Christ - fear.

FEAR.

We are afraid to be open to any new group of people, to admit the imperfections of our history and past - because, God forbid, we won't be great, any more.

That is never what made us great. What made America great was unity - and geez, when in our history have we experienced unity in all things? (never!) But, we recognized that in our great freedom, that we must show mercy: we must recognize my neighbor as better than myself; I must consider the needs of another as much as I consider my own. A spirit of brotherhood united even when we disagreed on the specifics.

Didn't it? Or is this just my idealization of America? Because I really don't know, anymore.

There have been dark times in our past. People have been oppressed. Admitting these things doesn't make America small. Repentance leads to reconciliation. Maybe "your people" had nothing to do with slavery because they weren't even in America yet. I get it. That doesn't mean you can't listen to those whose family stories have been defined by a great, dehumanizing, injustice. We must listen and acknowledge for some healing to begin.

The immigration issue won't be solved with a fence. It is not simple. Every day people risk their lives to wander across a mountainous desert...for what? To be greeted by a country that spits at them, locks them up, and sends them back? I guess I don't understand why it's such an arduous process to allow immigrants. What happened to Ellis Island? Why can't Nogales and Douglas and El Paso and San Diego become beacons of hope like Ellis Island was for my ancestors?

Because some might be drug dealers? Some might be rapists? I think we've got Americans who are drug dealers, rapists, terrorists...so, what are we really afraid of? [which is the same argument I'd pose for allowing Syrian and Iraqi refugees to come]

For those of us who call ourselves Christians, it becomes especially pertinent to fight our fears and embrace those who are hurting, sick, alien - different from us in every way. No, America may not be the same America from your childhood - but, that's part of the beauty, right? We are grasping each other's hands and swimming toward life.

The aspiration of life, liberty, and pursuit of happiness is not found without being in a community. To be an island is contrary to the Gospel...and the Gospel is Truth, is it not? We don't get to choose our community. We've got to struggle in this together.

To close...just don't give in to fear, ok, America? Don't succumb to hate or division. We are better than that. We must be better than that.


Friday, February 26, 2016

The art of detachment




The last two months have really driven home to me the necessity of detachment. St. Ignatius of Loyola, founder of the Jesuit (Society of Jesus) order, was staunch supporter of detachment.
I was first introduced to the concept while reading “My Life with the Saints,” by Fr. James Martin, SJ (SJ means Society of Jesus, btw). 

Each chapter of the book details a saint who has had a significant impact upon Martin’s life. As a Jesuit, the life of St. Ignatius has impacted Martin. There are many areas of Ignatian spirituality that resonate with my soul; one particular challenging way is the practice of detachment. [I started typing “idea of” and realized my challenge not the idea – it’s making the idea a reality.]

Part of the ways that God has been shaping my life/heart is opening my eyes and heart to remember that this life is not all there is. Post-college, I was pretty detached. It was easy to say “whatever you will, God” when it was just me. …and then, I got what I wanted. I got married! …and, suddenly, (perhaps it wasn’t sudden at all) I wanted my way. I wanted Dan. I wanted this life. I wanted all the things my dreams were made of, and I could never be satisfied with less.

As a result, my relationship to God suffered. Why? How? Well, it’s quite simple. I didn’t want Jesus. I wanted everything else – with a side of Jesus. A helping of righteousness alongside the main dish of Jessica’s desires. Dan as the main course seasoned with a dusting of God’s miracle blessing dust.

[Excuse me while I puke.]

It has taken me awhile since the diagnosis to get to a point of accepting detachment. July 28 – January 8 was filled with a lot of rosaries. As those who are familiar with the Rosary know, that means 5 “Our Fathers” a day. Five times a day, I was asking that God’s will be done on earth as it is in heaven…but, what I really meant was my will. I meant that he bring about the outcome I wanted: miraculous of healing for Dan, preventing him from suffering, deliverance from this trial.

This meant that my faith, my hope, my trust was all circumstantial. If Dan was getting better, Yea! God is good. But, as he continued to get sicker December 19th through January, faith falters when depended on an outcome like that.

On January 5, we met with the bone marrow doctor – and if you want a reality check: that’s where you need to go. I can’t speak for Dan, but hearing that what we had put our hopes in as a cure could potentially kill – it rocked me. I’ve blogged about this before, so I won’t go back there – had it not been for God’s mercy in providing me a new perspective, I do not know how I would be so full of hope now.

I started the following on January 15 about detachment:

Today (Friday) is our new chemo day, which means that on this day we meet with our doctor and we find out news. Approaching these days can be 'hard' - especially on days when you know results are coming. How do you prepare your heart for good news or bad news?

This fall, I read a little bit about St. Ignatius (founder of the Jesuits, aka 'Society of Jesus') - and his response would be to detach from the outcome. Detaching from the outcome does not mean giving up or accepting defeat. It simply indicates this greater understanding that the outcome of a test doesn't need to disrupt my faith: love for Jesus.

Dan and I were discussing this idea today: if treatments don't go as planned, it doesn't mean God isn't for us. ...and when we get bad news or there is confusion - that also doesn't mean that God isn't for us. ...but, it can feel like it.

So, rather than pin my hopes on an outcome (favorable or unfavorable), I have been getting back in touch with the unchanging, unwavering God who is. This God revealed himself to us through Jesus Christ - who demonstrated a radical way of loving - the Father and humanity. How did he do this?

Detachment. In the Garden of Gethsemane, Jesus prayed three times that the Father's will be done over his own desire. Through this, he submitted to a plan bigger than his own life. When he came to earth, he emptied himself of his rights as the second Person of the Trinity. Being found in the likeness of a man, Jesus practiced obedience to the Father. He accepted every part of what it means to be human - even dying (a horrible, excruciating, humiliating death).

The hope of His suffering and death was the resurrection: LIFE can come from death. Death is not the end. “Where, O Death, is your victory? Where, O Death, is your sting?” [not to say that life cannot be lonely for us  in the wake of death – but death is not the end]

Learning to practice detachment has helped me not only reconnect with the God who is, but, once again, God Himself has become my hope. Yesterday’s (2/25) reading from Jeremiah reminded me that our hope can be unfailing, when it is in the right place.

Reading 1 Jeremiah 17:5-10
Thus says the LORD:
Cursed is the man who trusts in human beings,
who seeks his strength in flesh,
whose heart turns away from the LORD.
He is like a barren bush in the desert
that enjoys no change of season,
But stands in a lava waste,
a salt and empty earth.
Blessed is the man who trusts in the LORD,
whose hope is the LORD.

He is like a tree planted beside the waters
that stretches out its roots to the stream:
It fears not the heat when it comes,
its leaves stay green;
In the year of drought it shows no distress,
but still bears fruit.
More tortuous than all else is the human heart,
beyond remedy; who can understand it?
I, the LORD, alone probe the mind
and test the heart,
To reward everyone according to his ways,
according to the merit of his deeds.

Detachment, then, is not the art of being separated from all things – but separating our dependence, devotion, and allegiance from all the things that cannot bring life (eternal satisfaction). The art of detachment is being fully attached to the Lord, from whom our help comes. Detachment is hoping in the Lord – not only for deliverance from a trial – but even more, for communion with the One who is…Life, Love, Truth, the Way. 

May this be the prayer for us all:
Blessed is the man who trusts in the Lord, whose hope is the Lord!