Headaches suck.

I’m on a roll, and feeling much better!

The past few days have been rough, here at the UCLA Medical Center. I’ve had the most horrible headache/migraine, almost worse than the month-long migraine I had just prior to my leukemia diagnosis.

By yesterday, late morning, I could not even sit up in bed. I was taking the max pain med, and had constant ice on my neck and lower head. The docs really aren’t sure about this symptom. They’ve been helping me beat it back, but where it’s coming from, we don’t know.

Honestly, it could be as simple as me nearly going off coffee. (That’s why I’ve been drinking coffee like Steve Mann today. And it’s helping, I think.)

Anyways, it’s been a rough few days here, but I think I’m pulling out of it.

My numbers are mostly bottomed out.

As you may know, I track my daily blood lab results on a spreadsheet, that makes a chart for me. Seeing a visual representation helps me get a better idea of where I’m at in my neutropenic period. The gist of my time here is that my numbers are falling as I arrive. Then they bottom out. Then they recover. Once they recover to a certain point, I go home. So comparing the current numbers with my last post-chemo neutropenia, I can make educated guesses about my progress.

So, being bottomed out, I have hope that I’m now transitioning to the back end of my stay here. Since this was my third and final round of chemotherapy, I am also approaching that time when I return home…for good.

Praise God.

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The worst of the suffering is…

As you may know, I just finished what should be my last round of chemotherapy. Yippy! Deanna and I were released the day before Thanksgiving, just in time to enjoy the holiday with family! And now I’m chilling at home.

The journey is far from over though. In the next few days I’ll need to head back to the hospital, for a couple weeks. If you recall, when I get chemo it whacks out my immune system. My white blood cell count, and a few others, will follow dangerously low. That’s why I’ll need to be back at the hospital, so they can keep me from getting sick.

After those two weeks, my care should transition tremendously. I’ll switch to getting checked all the time, sometimes at my local clinic, and sometimes back at UCLA. The upcoming months will mostly be about me recovering my physical fitness, and maintaining my remission.

Above all, much of this journey is behind me, and for that I am grateful. The ebbing and flowing of a struggle like this is no fun, and I really have a new understanding of what suffering encompasses.

Yet, when I think about Christ, I’m reminded that my discomfort is minimal, compared to his own suffering.

But more to the point, God has truly taken amazing care of me and my family throughout this journey. It is amazing to me how our needs are met so often, most of the time at the hands of friends and family who are sometimes sacrificially giving to us, and that’s not just monetarily! Lately I’ve realized how blessed we are to have the freedom to homeschool our kids as well. There have been times that the method our kids were cared for would have been inhibited heavily, by their need to go to an institutional school.

This journey would have been so much worse, had the needs of my family not been cared for the way they have been. Even my dog has had a place to lay his head every night. The love of God, through our community, has held us with great care. We’ll continue to be grateful for a very long time.

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When the 9 year old is wiser

Friends, tonight I failed.

There are times in life when someone around you makes a mistake, and you have a great opportunity to show them understanding, forgiveness, and grace. Tonight, I did not do that.

My lovely wife prides herself in making food that we all mostly love. She especially points out to me often that she enjoys making things that I want to eat. Sometimes, quite rarely, she chooses to do something she wants. Tonight, she made this killer banana crumb cake, with bacon. At the last minute, she included some nuts in the batter, just at one end of the cake. Then, she accidentally rotated the cake, and sprinkled more nuts on top. The problem is that the whole cake had nuts on it now. The problem is that she’s the only one who wanted nuts.

Once dinner was made, she cut into the banana crumb cake, to serve it up. It was then that she discovered what she had mistakenly done. She was actually more vocally upset than any of us. But I was upset. I tried real hard to just keep quite, but I’m pretty sure I failed.

I know I did.

Do you know who schooled me? My 9 year old boy, aka Freckles. He loudly voiced, “It’s OK mom!” He was clearly trying to put her at ease, not just say something nice. He broke my heart, and showed me Jesus.

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2013 PhotoChallenge, Week 45: SYMMETRY

For those who don’t know, I contribute to a photography blog, called PhotoChallenge.org. We post themed challenges every week, with the hope of helping people become better photographers.

This past week the theme was SYMMETRY. When we were out for lunch, on my birthday, I knew that my daughter would pose for me, with a few additional items. The whole shot is not symmetrical, but the subjects are.

What do you think?

2013 PhotoChallenge, Week 45: SYMMETRY

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The great hard drive debacle of 2013

For those following my recent mistakenly-formatted-hard-drive debacle, I have an update.

This came as a result of bad data/media management, on my part. I had stuff all over the place, and was “intending” to get around to cleaning it up for months. (I’ve had some downtime, and should have done it a while ago.)

So one evening, I needed to reformat a usb flash drive, and I went about doing it, but I selected my mobile WD usb hard drive instead. That held a ton of stuff, most importantly my whole photography library of raw and processed photos since about mid-2010.

I WAS able to rescue the photos, and most of the other media, with a tool called iSkysoft Data Recovery. It cost me $90, but it was worth it!

The next thing I set out to do was get responsible with all that data. Who wants to lose all their family photos?! With 4 kids, we have a bunch, and I don’t think I’m a good steward of documenting their childhood, if I don’t make an effort to retain all those wonderful photos.

So for the last several days I’ve been moving data all over the place. I also separated the large drive that I store tv/movie media on, from the rest. There’s no need to back that up, and I’ve found it’s easier if it’s plugged directly into my media player at the HDTV.

This morning I finished getting everything plugged in and running.

The next big thing I needed to do was reevaluate my offsite backups. I had been using my Amazon S3 account with a few homemade Automator apps for backing up my Apple Aperture and iPhoto libraries. But, with changes to how and where I store those photos, and addition of a Macbook Pro a few years back, I really haven’t been backing up well enough for a while. The mistakenly formatted hard drive is the perfect example of my backup system failing me, because I wasn’t using it correctly.

As I was working through all the data storage issues, I spent a bunch of time over that last week learning about alternatives. I was happy to rework my Amazon S3 setup, but wanted to know that what I was choosing was the best for me. However, my pal Jeremy Brooks recommended a dedicated service, for offsite/cloud backing up, Backblaze. The price is better than many others, and it’s basically an unlimited backup. I really only want the ability to upload stuff I want saved. Then, in a crisis, I could restore from that data. That’s it. I don’t need/want to upload and download stuff regularly. I use a free Dropbox account for that. So, having a setup-and-forget-about-it service works perfectly for me!

Right now Backblaze is running the initial backup. It’s gonna take a while, maybe even a few days, and that’s ok with me. Once it’s run, I really don’t need to worry about grabbing anything on the way out the door in an emergency, like a fire.

It’s all somewhere else, easily restored, once everyone is safe.

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Remember the Sabbath day, to keep it holy.

I woke this morning with great hopes that my ANC (absolute neutrophil count) would have risen. You see, of the 4 lab numbers I keep track, the ANC is the primary deciding factor, in letting me go home. My white blood cell count, and the ANC, bottom out after the chemo does it’s damage, good damage. With them so low, I’m quite able to get sick, that’s why I’m in the hospital during that time.

So, I also track several other numbers, because they are also good indicators of my status. And over the past few days, there has been an upward trend. This got my hopes up! I let myself get excited, and even couldn’t go right to sleep last night, thinking of how today would go.

But, I woke to hear the news that my ANC is still basically zero. :-(

Then I got sad. Seriously, I was really upset. I began to cry, in sadness and in a little desperation. I’m just so sick of being in the hospital.

So I put on a playlist of hymns. A friend recently recommended a new-to-me artist, Chelsea Moon, and I picked up two of her hymn albums. I found myself really enjoying the time of worship, just listening to these wonderful old songs. A few touched me, and then it rolled over to Abide With Me. (I recently posted about this song, and this recording is by MP Jones.)

Wow. I now believe that Abide With Me must be the cancer hymn. I sat there in tears, being blessed and encouraged. I caught myself singing along, in my broken, yet-to-fully-heal voice, actually kinda loud. At the end of this post I’ll include the lyrics. The words are more relevant to me now, than ever before. I will forever recommend it as appropriate for a person going through cancer treatment.

“Abide with Me” by Henry Francis Lyte, written in 1847.

Abide with me; fast falls the eventide;
The darkness deepens; Lord, with me abide;
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me.

Swift to its close ebbs out life’s little day;
Earth’s joys grow dim, its glories pass away;
Change and decay in all around I see—
O Thou who changest not, abide with me.

I need Thy presence every passing hour;
What but Thy grace can foil the tempter’s pow’r?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness;
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies;
Heav’n’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

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Abide with me

I’m quite comforted this evening by the hymn “Abide with me”…the last few lines…

Hold Thou Thy cross before my closing eyes; Shine through the gloom and point me to the skies. Heaven’s morning breaks, and earth’s vain shadows flee; In life, in death, O Lord, abide with me.

Just another reminder that our comfort comes not from our comfort, but from the work on the cross.

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Your routine matters

Your routine matters. When life uproots your routine, seek ways to continue it. Christian, it can even be a very subtle change that can draw you away from communion with the Lord.

We do not vacation from communion with God.

“I can do all things through him who strengthens me.” (Philippians 4:13, ESV)

Our whole day is accomplishable and attainable, with strengthening by the Lord. But, this is not some crazy license. What we do also matters. Yet, that’s what makes one day, or even a season of time, different from the rest. Keep up with me…

Our regular life consists of waking up, spending time in the Word and prayer. Then we go about our day, in continued prayer with the Lord, worshipping Him throughout. But what do you do when you go on a business trip? How about during a week’s vacation? What about those 5 days you took off to care for your mom when she was in the hospital? What if it was you, in the hospital?

Do you continue getting up and starting the day with the Lord? What about those Friday morning bible study times? Do you continue that?

This isn’t a recipe. I’m assuming that you have a routine that facilitates your communion with God. Interpret my example routine for yourself.

Our chief aim is to glorify God, by being most satisfied in Him. So should we be overwhelmed by all the possibilities of the day, and how we can or cannot glorify the Lord? Should we stress over this? No.

“Thus says the Lord of hosts: Consider your ways. Go up to the hills and bring wood and build the house, that I may take pleasure in it and that I may be glorified, says the Lord.” (Haggai 1:7-8, ESV)

Consider what you do regularly, those are your ways. After you consider your routine, you must find additional ways to allow God to take pleasure in your worship, so that He may be glorified. In the midst of our regularity, we continue to glorify God. Yet, when we take a detour, we are meant to continue to glorify God.

Last night I was tempted to sin. As you may know, I’m working through treatment for leukemia. And for the next week and a half I’m neutropenic, and simply waiting it out at UCLA Santa Monica. Even that part of my routine is changed. I’ve been getting treatment and care at UCLA Westwood, up until now. But, for this 2 week period, they didn’t have room for me at Westwood, so I’m here.

Our kids’ routine had become so out of sorts that we decided to have Deanna stay with them at home this time, and come visit me a few times. So, even having Deanna with me 24 hours a day, is changed.

I believe that the Lord protected me, because I was really tired. Just as I was tempted, my eyelids became heavier than my desire to sin. But I woke this morning, with a heavy heart. I quickly decided that I wanted to watch a video sermon, so I pulled up one of my favorite preachers, on my Macbook.

As I worshipped through being taught, I started thinking about how this came to be. I was faced with admitting, if not confessing, that I had allowed my regular routine of communion with the Lord to slip. My reading of the Word had shifted to only hearing about it when I happened to read a “Christian” book, or the occasional dabbling with my Bible by my bedside. (I read a lot, but not always Christian teachings; sometimes regular old fiction as well.) I really can’t sing in my hospital room, so my time of singing to the Lord, which is quite valuable in helping me to orient my heart towards God, has all but disappeared.

OK, now what do I do? Well, when you realize that you’re in a similar place, the most important first steps are…Confession, confession, confession! I confessed this temptation to Deanna, and then sought out a few others to make aware. I know these men will not only pray for me, but they’ll check in as well. Keeping your struggles a secret is like adding fertilizer to a growing plant. You’re not removing the sin, or temptation. You’re feeding it. Trust me. Tell others.

Then, go back to the basics! If you’ve found that you’re not attending your local church for worship services, get back to it! If you were a part of a smaller missional community, but have been less available, clear your schedule! And get back into the Word! Open your Bible right away, and start reading. If you want direction, get a daily reading plan and jump right in. Bookmark this plan, called Every Day In The Word.

And how about if you can’t do some of these things, like me, here in the hospital alone? Well, I’m back in the Word. That’s how I came upon those verses to share with you above. It’s also how the Lord flushed out this whole blog post idea.

Then, I’m using the same technology that was used to tempt me. I’m using it to participate as much as I can in corporate worship. I watched that sermon this morning, and I’m planning on watching a sermon every morning with my breakfast.

I’m not sure how I’ll fix the singing issue. You don’t need to sing, to worship. And worship is not necessarily singing. But, for many, and for me, singing helps orient my heart into a place of worship. And I need that. Today I think I’ll try putting on some worshipful music and singing along, quietly. :-) And I’ll go from there.

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Happy birthday, my love

You single guys, if you struggle to find a good quality woman to wed, may I make a suggestion? Find one half as great as mine, and you will be blessed.

Seriously, it is such a joy to have her as my wife! She works hard to mother our children. She doesn’t settle for, “just enough”. And she truly serves and cares for me. Sometimes it takes the blessing of affliction before you can see Christ in another person, especially your spouse.

And as I grow to love and respect her more and more, my attraction to her grows as well! Why? Because she is my standard of beauty!

Happy birthday, my love.

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Continued remission update…

Well folks, it’s been a while since my last update. Sorry.

Goran, my clinic NP. He's taken pretty good care of me so far.

Back on the 7th of October I mentioned that I was headed back to UCLA for another bone marrow biopsy. And in fact, I did come back down for one, last friday. I also was scheduled to be readmitted that same day, to start my second round of consolidation chemotherapy. That too happened.

This bone marrow biopsy wasn’t as bad as any of the rest! I’m not ready to condone them or anything, but relative to the rest, this was awesome! I even offered up one of our kids to the NP who performed the procedure! (I think that was the cocktail of drugs speaking.)

We had a short break after the procedure, and headed to The Grove to kill some time, and get an awesome meal. Try Fat Cow, it’s a Gordon Ramsay place. Really good!

Tasty eats before getting admitted later today. This will beat that low bacteria diet in the hospital!

After some shenanigans, I finally had a bed. You may not know, but patients like me go to the same wing on the same floor, most of the time. That means that I also get the same team of nurses each time. This makes for great opportunities for relationships to develop. I’ve been trying to pray for these people, and ask the Lord to allow me to be a source of light. It’s not always easy to remain aware of your witness when you’re not feeling well. Yet, it is a great opportunity to live missionally, by simply suffering well. And thus far, I believe that the Lord has empowered me to do so.

The first few doses of chemo were kinda rough. I must admit, this has been the yuckiest round of chemo so far. Today is a good day though. I mostly slept for the past day and a half, I’m confident that the Lord was allowing me to recoup. This afternoon I’ll get another dose of chemo, followed up by the last in the wee hours of the morning tomorrow. Assuming all goes well, we’ll be sent home tomorrow morning.

I’m thankful to the Lord for keeping encouraging people around us! I get messages and texts all the time from caring peeps, and I love it! I might not be perfect at replying to you all, and I hope that you take that with some grace. :-)

I’m also thankful to all the wonderful peeps who’ve been taking care of our home and kids! My mom and dad make multiple trips down here from Camarillo, sometimes just because we need some laundry done. You know, I don’t worry one bit about how the kids are doing. Why? Because I know that they’re safe and being cared for well!

Thank you Lord!

After we’re home this week, my numbers will drop and we’ll be back down here at UCLA for about two weeks. That period is called neutropenia. Once I bounce back from neutropenia, we’ll have a week or so of break before I’m back down here for what could end up being my last round of chemotherapy!

One more thing. For the praying among you, I thought I’d mention an old friend of mine. Jon Ramsay. Jon and I were roommates in college. Earlier this month he had some headaches, along with other symptoms, that resulted in scans. A tumor was found, and he was rushed into surgery. This is obviously the short of it. His wonderful wife has been blogging most of their journey, here. Be praying for them, as Jon’s recovery journey may be lengthy. He’s a great man, and I’m confident that the Lord is with him.

Oh yeah, and the results are in from last week’s not-as-bad-as-the-rest bone marrow biopsies! No more excess blast cells! That’s good, real good! Continued remission.

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