Saturday, December 26, 2015

Christmas - don't miss it

[Disclaimer: some of this may not seem very bright and shiny, and a little bitter, even. These are my thoughts, and to get to a place of healing, understanding, insight, and growth, I must let them out.]

I don't really know where to start; only that I need to speak my mind or I will not ever rest. This was a hard Christmas because I felt like I was strong-arming God, holding him at arm's length to keep him from getting too close...because if he came closer, I might just break.

I don't know if it's the reality or the gravity of our situation that is coming home to roost, but I feel HEAVY. Burdened. Like a person fumbling in darkness.

And the promise that "the people walking in darkness have seen a great light" just doesn't seem real. By real, I mean present. And, when people with bright, shiny lives post "the weary world rejoices," I am cynical. What do they know of weariness? But, further...I want to know...where is the rejoicing?

I am weary. I am weary and I have only had this burden six months - or a year - or 4 - or however far back you want to go. And where is the rejoicing?

Where is Jesus?

When you receive more bad news - on Christmas, no less...then the shiny posts about a Savior coming to the brightly lit, shiny packaged world seems even more revolting. Who is need of a Savior when we are so secure we can worship his coming without a thought of those with less? When we gather and store and pity those who can't, but do nothing to share? We are so full that we miss him, even when he is here; even when he is being celebrated. We want the idea and not the reality.

Oh, this is me. Am I not the world's chief idea-list? I love ideas for the possibility, the fun in dreaming the new world. I have wanted the washed-up, polished, sterile, SAFE Christmas. The happy family memories, the dreams of many more like this...and I am weary because my fear and worry that I truly cannot know, it just pulls me down into a bog. It's tentacles wrap around me to pull me deeper while I thrash and struggle, and I am gasping - desperate for joy while sadness pulls down harder.

And I want Jesus. I want Jesus to take it all away. I want it to be only joy, only hope, only belief - a firm foundation that it. will. get. better! I want Jesus to sit with me and wipe away my tears and tell me the truth that will set me free. I want him to wipe away the gloom that keeps creeping in to steal what little peace I have.

But, I haven't wanted Jesus - not enough to let him enter my fear. Not enough to let it go. Not enough to hand my love, my life, my joy, my fear to him and let him truly come in and transform me. I have wanted to hold on to some semblance of me - security? that I ended up barring the door and pulling up the bridges.

I sat in the pews Christmas Eve singing about Jesus' birth, enjoying my family, and reflecting on Christmases past. I choked up thinking about the people who used to be here, sharing their gifts with us, and the shadows that are left in our hearts.

At the second service, I sat in the pew, asking Jesus to come to me. A woman sang, 'O Holy Night,' and it was the most beautiful offering. At first, I teared up at the sheer beauty - but I didn't want to cry at Christmas Eve. It's Christmas! It's supposed to be JOY-FULL! [I think of Lucy: "Oh, Charlie Brown. Don't you know what Christmas is about? It's Santa Claus and ho-ho-ho and presents to pretty girls..."] Then came this part:

The King of kings lay in a holy manger,
in all our trials born to be our friend [cue the heart softening];
He knows our needs, our weakness is no stranger [cue heart breaking]:
Behold your king, before him lowly bend,
Behold your king! 
My king ... born to be my friend in all my trials ... He knows my needs; my weakness - my fear, my worries - they are no stranger to him. Gaze upon your king...and recognize....

Jesus, who thought equality with God was not something to be grasped, made himself like one of us. Being found in human flesh, he humbled himself and submitted himself to death - even, death on the cross.

Attending my third church service in less than 24 hours yesterday morning, I found myself grateful for the Mass. The mingling of the birth with the death. It wasn't simply for Christmas that Jesus came. And, the "new and glorious morn" that dawned with his birth seemed extinguished by his death 33 years later. Christmas was the beginning of a new chapter, but Easter was the true glory. EASTER was the triumph that Christmas heralded...and it took thirty-three years (and a lot of suffering) to burst forth.


Sometimes, we have to wait for the dawn to burst forth to glorious day.  Sometimes, it seems like all is lost; that hope has been vanity. Sometimes, it seems like the kingdom is bursting forth at the seems, that the all is here right now - that all things have aligned, and all is right with all things everywhere.

I think, Jesus would say that is not "it." That is not it.

I am it.

I am the Light of the World.

I am the Bread of Life.

I am the Wine of the New Covenant.

I am the Way. I am the Truth. I am the Life.

I am the Peace. I am the Healing Balm.

I am.


Tuesday, December 8, 2015

My unicorn

Last week, I gave you some updates about Dan - now I give you some clarification.

One: Dan still has cancer. The abnormal T-cells in his blood is the cancer. The spinal fluid is showing that the T-cells are currently hanging out there...and fewer T-cells are in the blood. So, the chemo approach and dosage has to change.

Dan is not getting the same chemo rotation that he's had in the past. He will not be getting a spinal tap of chemo. Instead, he is getting high dose methotrexate, which will penetrate the brain-blood barrier. This will be delivered through his port, like all his other chemo has been. In order to get this chemo, though, his body pH has to be an alkaline state. [Currently, it's 9:10pm, and we are waiting on Dan to get to 7.1 so he can get the chemo. I don't know if he is normally at a pretty acidic state, but - we sure didn't think it'd take this long.]

Once he's alkaline, he'll get the chemo - which should take 2 hours. This chemo is unique from the others, in that, it will not wipe his body of the blood cells (or whatever chemo does). He will not need to get a shot to boost the bone marrow's production of white blood cells. So, that's good. After getting this chemo, he'll keep getting fluids via IV and his kidney production will be monitored to make sure that everything is functioning properly. He will get released when the levels of methotrexate in his body are 0.1.

So: for those who read this tonight (or tomorrow, prayer knows no time constraints) here are some things to ask for - that Dan will reach the alkaline state soon and chemo will get started. 2) That his kidney & liver keep functioning normally (as they have been), so that he can get released sooner rather than later. 3) That the chemo WORKS and kills those blasted abnormal t-cells.

In two weeks, Dan will come back for a lumbar puncture to measure the levels of T-cells in his spinal fluid. If there are no abnormal T-cells, then he is done with chemo. If there are abnormal T-cells, then, he will have chemo like this until it's gone.

Once there are no abnormal T-cells, then we will move forward with the bone marrow transplant. Some people have asked details about this. We don't know ANYTHING yet. Like, ANYTHING. A request has been submitted with the transplant team for us to have a meeting. Nothing else is in the works - and, it's not the primary focus right now.

At any rate, from where I sit right now, we are not at the end. However, as I keep learning, "the best laid plans of mice and man often go awry." So...who knows? Tomorrow I may have different information for you.

Friday, December 4, 2015


Sometimes, answering prayers doesn't look the way you want it to.

This week, Dan got a call from our doctor that his pesky abnormal T-cells are showing up in his spinal fluid. This has flummoxed our doctor (her words). He should be responding to those spinal taps of chemo, and the T-cells should be responding in such a way that there aren't those pesky abnormal T-cells.

So, this next round of chemo (which, God-willing, is the last) is going to entail Dan spending 3 (or more) days at the U of M hospital receiving a higher dosage of one of the CHOP+E drugs. How long he stays will depend on how well his body does at excreting the stuff. This dosage is supposed to get past the brain/blood barrier - so those blasted little cancer cells get good and dead.

Cartoon courtesy of the Awkward Yeti; props to the lovely Andrea for sharing [she is not an awkward yeti]
Most likely, Dan is going to need a bone marrow transplant sometime in early 2016. {Note: this is my understanding - from what Dan has relayed to me from his conversation with the doctor, so take it with a grain of salt} My understanding is that the transplant isn't necessarily to get rid of the cancer, but more accurately needed to reset Dan's immune system. Currently, the levels of the Epstein-Barr virus are undetectable (based on the blood work taken every 3 weeks); his red & white blood cell counts have been good (usually in the normal range - again based on blood work) - both major improvements from July 2015.

So, why the presence of the abnormal T-cell? This is the perplexing nature of Dan's case. If Dan still has his immune system, post-chemo...could this all happen again - even with the rigorous nature - even with the preventative spinal tap chemo? I believe this is why our doctor is strongly considering the bone marrow transplant.

[Look I've just written 4 paragraphs without talking about my feelings.]

My feelings. Well, the first feelings were dis - disappointment, discouragement, dismay, disheartened, disillusioned, distraught, distrustful (of God). I mean, wouldn't the miracle of this be that Dan was all better with only chemo? Wouldn't that show God's power the most? Wouldn't that show His love the most? Wouldn't that impress people the most and then they'd want to be friends with the God who takes care of his friends like so awesomely?


Hi. I'm Jessica, and I think I know best.

The truth is - I want that. I want that path of least resistance. (Who wouldn't?)

...and yet...what I really want most for Dan is COMPLETE HEALING. I want his whole body restored. I want him to never be sick again like he has been (the entire time I've known him). ...and, that just might take more than some horrible chemicals. Maybe it requires a complete overhaul. Maybe it requires someone else's blood.

[cue storyline that coincides with the Gospel.]
[but I won't.]
[for now.]
[because I just saw the connection and have nothing ready to say.]

...and just so you know, I have been struggling lately. This news hit me really hard...mostly because I didn't expect it...and it really hit my faith - mostly because I was putting parameters on God - His will and His love for me. If I do that, I will be disappointed every time. That's not who God is, and that's not how God loves. So, to be where I am today, has required some acts of faith - to choose to believe that God can work good in any situation, and to trust that God can work in lots of ways - and most of them are never what I expect.

Oh! and also that God's timing isn't my timing (which, as I said to my brother the other night, is the story of my life - so you'd think I'd stop being so surprised by it's reality).
[Hi; I'm Jessica, and I think I know best.]