Catch up…#2

Lately, I’ve been walking a lot more. Why you ask? Clearly you haven’t been paying attention to my Facebook feed. I did promise to talk more about it here though. So, here goes…

After my stint in the local Marian Hospital, I had a very soon appointment at UCLA, in the clinic. Well, the night before, I left too late, in my truck, with a bad alignment pulling to the right. It was dark, late, or actually early, and raining. Bad recipe all together. Complete failure on my part. Somewhere just into Goleta, which is basically the normal part of town, north of Santa Barbara, I woke to the righthand most guardrail. Yep, I fell asleep and had an accident. Basically, with the cruise set at 65, for the good MPG, I went from listening to music off my iPhone, to being jarred awake by my very first airbag deployment.

The most important things happened. NO ONE WAS HURT. Thank the Lord. That would have weighed on me more than I can imagine. My only injury was my pride and a little scratch on my right cheek. I hit the guardrail, and knocked down about 30 of the plastic markers that extend above it. Oh, and my entire right front wheel, suspension, and assembly came off. It was 30-40 feet behind me on the shoulder.

But it’s just stuff! No one was hurt. I immediately dialed 911, and reported what happened. They were able to locate me via the GPS on my phone, and a pair of CHP officers were there within minutes. The gases from the airbag weren’t too good to smell, and I had enough shoulder to get out, so I did.

Before I knew it, the CHP officers were there. They did their job well and professionally, checking me for possible DUI, or being under the influence, etc. They’re adept enough to figure out sketchy situations quick, and determined that I was simply another dork who fell asleep and crashed. Quickly they picked up on my professional description of what happened, and asked what agency I worked for, and showed them my ID. It quickly turned into 3 brothers chatting it up until the tow truck arrived.

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Yeah, it’s totaled.

Because I was headed south to stay with my parents’ for the night, for the following day’s clinic appointment, I called them. They were worried, but I tried to calm them. They met us at the garage, where the truck was towed, in Goleta. Unfortunately, the sight of my completely whacked truck didn’t help, but they quickly agreed, at least I wasn’t hurt, nor was anyone else. And all of us us agree, it’s just stuff.

On the truck part, all is well. It was obviously totaled, I hoped and hoped, but knew it would be. Insurance is paying it off, and I was wise enough to get GAP insurance when I bought it, so there’s no money out of my pocket to replace it.

Now, back to the Leukemia Journey. I’m purposefully leaving out some stuff that is honestly, not for this audience. To say the least, I’ve been suffering from some cognitive issues that have manifested themselves in unhealthy ways. Ways that have at the very least put others on guard around me. I understand, and am seeking not just the Lord’s direction and Spirit on this one, but also depending on some really good Psychiatric and Psychological care. For those who have known me for a long time, this may be shocking, that I’m seeking this care, but I need it, and it is helping…a lot!

So, we headed down to UCLA for my clinic appointment. My cognitive stuff was clearly coming to a head, and for the lack of desire to parse out each step of the way, it was determined that I would be admitted to UCLA, for some extensive testing. Via the ER, I was admitted, and spent the first night in one of the semi-upgraded, non-ER bed rooms. By the next morning or so, I was “home” on 6 East. For about the next week, I underwent a level of testing and evaluation that I’ve yet to experience at my stays in UCLA. At first they looked at the possibility of a seizure disorder. Three and a half days later, of an EEG on my head, that was ruled out. I had lots of blood draws. I had a huge LP/Spinal Tap, taking a massive amount of fluid. All of this was tested for all sorts of things. I had consults with infections disease specialists, neurologists, psychiatrists, and many others of whose speciality I have no idea.

I felt like a patient on the tv show House.

Eventually they began ruling out many of the most scary and unique things. For those who know the intimate details of my extended family, they even tested and ruled out Parkinson’s and the various forms of dementia and Alzheimers.

As these possible explanations decreased to nothing but rejections of possibilities, we were left with the highest likelihood being some sort of cognitive psychologically influenced episode. I had considered this early on, but was letting them do all they could to find the result however they determined.

As of late, my legal case in reference to my disability, worker’s compensation, and ultimate retirement, of which the details I cannot address here, have become a GREAT source of frustration, anger, and even some pent up rage. With my GVHD flaring up, which started all this “2 steps back”, this winter, I have gone from a tiny dose of hydrocortisone back to a massive dose of prednisone. What does this mean. I was chill guy, almost off my steroid, and nearly done with my steroid-induced diabetes. Now, I’m massive dose of prednisone, with insides that feel like “Hulk Smash”!!! Combine that with the anger over my general retirement issues, and I believe that’s a recipe for instability. And my doctors at UCLA agreed fully.

But above it all, God has been good. I’ve not weathered it well, but he sustains men and continues to care for me and keep me moving forward with productivity and health. In my next post, I’m going to talk about some changes I’ve made as a result of some of the decisions my docs made for me. That part, I’ll finish with here.

So, at first, when they thought I had a seizure disorder, they’re bound to tell the DMV, even though they ruled it out days later. But that has ended up being no big deal, because the doctors have said 6 months ain’t gonna cut it anyway. I should expect more like 8 months. Such is life!

The great men around me, in my Gospel Community Group, immediately came to my side, and listened to my situation, and gave me the most sage and wonderful wisdom. They said, “Don’t replace the truck! You can’t drive, save the money.” It was a no-brainer for me. I took their wisdom, and let the insurance and GAP insurance simply take it away. Now, since I can’t drive, I have no truck payment, no car insurance to pay, and zero fuel costs. I just reclaimed a ton of money into my monthly budget!

More to follow in the next post…

So much happening in 2017

I’m glad I took the last few opportunities to get y’all caught up on my leukemia journey. Since then, a bit of a set back, with some alarming side effects have occurred. I won’t hold back on this one. (As if I ever really do.)

A few weeks ago, I started having what my team calls cognitive episodes. I’d get confused, lost in my mind, and in the real world. Side note, I recently installed a looping “security camera” on my windshield, but because of my cognitive issues, it was working, but not correctly.

So driving around town, the video shows, that years of good habits, actually made me drive  instinctively safe. What video was viewable, knowing that I was very “out of it”, I witnessed zero laws being broken…by me. 🙂

However, it WAS clear, I was not here.

I had a pretty upsetting night a couple weeks back, that kinda started this whole thing. I’ve said before this journey can by 5 steps forward, with 2 steps back. These last few weeks have been textbook, “2 steps back”.

This night I’m starting with, I was supposed to pick up my kids, and we were going to a movie and dinner. I never made it. The few video shots I could decipher, trying to do the most basic thing, I clearly just could not get to my destination. What makes it worse, is that I was instinctively using Google Maps. While normally I don’t “need it”, I use in case one of the oh so patient kids texts me while I’m headed to get them, then I use Siri to tell them exactly when I’ll arrive. So, the security video I can see me “following” Google Maps, except I wasn’t. I can literally hear Google Maps say, take the next left at XYZ street. And on the video I make no effort to get into the left hand lane to turn. More often than not, I make a right hand turn. The whole thing was one giant poo sandwich!

After a while, the kids start texting me, but because I’m driving, and have learned without thinking about it anymore, I didn’t reply. But thank God, Deanna borrowed one of the kids’ phones, where I still share my location so my kids and I can track each other, and Deanna started just watching me. FYI, I am glad she did this!

It didn’t take her long to determine that I was whacked. So she called me. I answer. She gently tries to say, she thinks I’m confused and suggests I just park the truck. She’ll come get me. Confused, I do it.Oddly, I’m in front of a fire station. Don’t think that was an accident.

In short order Deanna arrives. She comes to my truck, and I don’t remember the conversation. She said I was a little upset, and hesitant with her. But ultimately I did what she was asking, get into the passenger seat. She jumped in and drove. The next few hours are sketchy for me. But in hind sight, some of the details started coming back. So what’s next is more a recollection of what others said happened, I believe them.

I may even need to be reminded, if after I publish this and someone who was with me remembers it differently. I now know, just forget what you thought happened, and accept the other version. It’s most likely right.

I think…Deanna took me to the local Santa Maria hospital ER. Where I was triaged and ultimately taken back and a litany of tests began. After a while, Deanna had to go, and I think I was alone for a bit. I think someone else visited me, but I’m not sure. Working the ER that night were a few friends from church, one is an EMT and the other is a youth group friend of my teenage daughter, who is a volunteer. I recall they each made polite efforts to say hello, etc. Neither were “assigned” to me, I think, so their stops by were when they were near me. However, the EMT friend, I feel, made a stepped up effort to make sure I was OK.

There was no “room in the inn”, upstairs, so I went to a newer adjunct area officially still in the ER, but with hospital like beds, and a few better/more comfortable features. I’ll take anything over and ER bed. I spent the night there, zero complaints.

After the folks from upstairs paid all their visits, etc. I honestly don’t recall how long I was admitted, I could be off by even a day or so. Either way, after taking with my medical team at UCLA, all agreed that I could be released. The only thing they found through their testing, was an elevated liver and ammonia levels. The ammonia level was the most likely problematic issue

A few days at home, and UCLA scheduled me for a clinic appointment. More on that, in the next post.

It has been entirely too long…

Friends, as I was poking around my blog, I realized that the last real update to my Leukemia Journey was April of 2016. Wow, it’s already the 10th of January in 2017. I should be ashamed. So many wonderful people have been keeping up on me, yet are only getting little updates on Facebook. It’s time for an update.

2016, medically wasn’t so bad. I really did not have any setbacks until the end of the year. The week before Christmas my liver and bilirubin levels began to climb. Eventually, they peaked too high, and my Nurse Practitioner at UCLA contacted me and informed me that I would need to come down for an admittance. So the evening before Christmas Eve I packed up and headed southbound. Early in the morning on Christmas Eve, I rolled into UCLA and was in a bed up on my old floor, 6 East, at about dinner.

I ended up being there for a week. Released on New Year’s Eve, I was able to head back to Camarillo and crash at my parents’ place for an extra night.

With some additional personal life issues, it ended up being an odd blessing that I was distracted from what could have been a more depressing time for me. The loss of my dear Aunt Jan, which I have already blogged about a few posts back, and the changes to my immediate family situation really could have been a worse time for me. Yet the Lord in all His sovereignty and wisdom saw fit to comfort me and show me how to rejoice in His glory at the time we celebrate His birth, His coming into our world…Emmanuel, God with us.

For that, I am quite grateful. Thank you Lord.

The medical jargon is basically that my continued struggle with Graft Versus Host Disease (aka GVHD) had flared it’s ugly head, and sent me back into the hospital, so they could pump me up with more meds, and get it under control. While my steroid induced diabetes had almost abated entirely, and I was on the cusp of going off steroids entirely, I’m back on high dose prednisone again, ravaging like Hulk Smash inside, with a devouring appetite again. So I’m back to constant diabetic maintenance and injections and watching my diet more closely. If that’s the worst of it, I’m still doing just fine.

Today I feel real good, physically and medically. I was able to remain active in the hospital, and I’m keeping my activity level up now that I’m back home on the Central Coast. Every few days, I sleep a bit extra, to help replenish. I’m back to walking shorter walks, but it’s not as hard to keep motivated as it was during the year last year. I will admit, one of my struggles during 2016 was maintaining the motivation to get up off my butt and get healthy again. In fact, that very well may be the single worst issue I did not deal with well, during that whole year.

To bring this to a close, I feel great! I’m excited about what 2017 has to offer, and look forward to what the Lord has in store for me and mine.

Love to y’all!

2017 PHOTOCHALLENGE, WEEK 2: WE ARE WHAT WE EAT

As a 2.5 year old bone marrow transplant recipient, there is something cathartic about making my own bone broth for use as a base in homemade Pho soup. I roasted this before crock potting it into a tasty bone broth. You are what you eat. 🙂

Merry Christmas UCLA!

Just last week I was contemplating a fresh update to my Leukemia Journey. But now it seems, I ought to do so. 

To be brief, I had some lab work done today, at home. When the results came back my bilirubin and liver levels were too high. So, my wonderful NP called me, while I was out eating the greatest soup I’ve ever had, Pho, and said I must come down in the morning to be admitted. 

So, it looks like I’ll be celebrating Christmas back on 6 East, at the Ronald Reagan UCLA Medical Center. Yippy!

More to come as I learn more. Oh, and I was lucky enough to grab a couple room decorations at 30% off at Target!

Celebration of Life – 2016


Yesterday was the annual Celebration of Life, for the Hematology Oncology peeps, at UCLA. The medical and support staff, patients, survivors, and families are all invited. 

This was my 3rd year in attendance. 

I was honored to sit next to a gentleman who had his bone marrow transplant around the time I was born!

As is the general program, a variety of speakers step up and share their story. Most are survivors, some are family of those who have passed, and a few are from the staff. I was honored to speak the first time I attended this event.

Afterward, we have a small reception where we get to mingle with everyone. THIS is my favorite part. I get to visit with a few former neighbors from my time at UCLA, whether they were fellow patients or family of patients. And I also get to see many of the staff who cared for me during my several stays up on “6 East”. I love to see them again!

Yesterday was a particularly, most impactful day for me. In the midst of much life change, I was encouraged and uplifted by so many of my former nurses and administrators. Several brought me to tears and even touched my heart with their words and affection. 

Today, after having slept on it and reflecting this morning, I was unbelievably renewed by yesterday’s event. What a day to rejoice! God is good, and seeks for my wellbeing!

He “wrote the book” on blood cancer.

First Leukemia Update of 2016

It’s been quite some time since I’ve updated everyone. Sorry.

Right up front I want to help clarify. I am cancer free. I have been since my bone marrow transplant, back on July 4th, 2014. Several folks have asked, being unsure of my status. Since then, my setbacks and even the rehospitalization were all a part of my recovery, but no new cancer. The post transplant recovery is simply longer than most realize.

My physical recovery has been progressing, albeit slowly. I’m more active than I used to be. Just a few days ago, I got hankering to make a couple hiking sticks. So after dropping Deanna and the boys off at school, I shot up to Tepusquet Canyon looking for a downed pine tree. Found one with skidmarks leading to it. Bummer, hope they’re ok. Some locals had already harvested the logs, but they had left all the branches. I set out to select a few good branches. Both were much longer than I, in fact the really good one was about the length of my Honda van. I drove them home with almost 6 feet of it sticking out the front passenger window.

Anyway, that’s just an example of me trying to get out and do more by starting small projects. I’ll get some photos when I start chopping them down.

I’ve organized a short trip with Tom and Eli, and a friend from Camarillo to head up to the lower Kern River for some fly fishing, in early April. We’ll be dry camping with his travel trailer. Not bad! I’m hoping to have at least one walking stick done by then, to help me navigate the sides of he river.

I had to take an honest look at my ability to get back out on my road bike, and concluded that it’s going to be too long before I’m comfortable again. So I’m selling my road bike to get an Electra city bike.

Overall, I’m slowly getting stronger. Deanna and I did a 4 week semi-prescribed diabetic friendly diet. It helped us learn more about portion control and how much refined sugars and carbs we don’t need. I tried to cheat the other day with a donut, and about a third into it I was repulsed and starting to feel ill. (I think there will always be love for an original Krispy Kreme and a tigertail from Donut Man.)

Emotionally and spiritually it’s a different story.

We recently started attending what’s called a Redemption Group. It’s really been a great process that I can see the Lord using to continue to sanctify me. He’s already been revealing new and hard things for me to work and contemplate upon. It’s weird, my private time with God is much richer now…now that He’s wrecking me afresh. He and I have much work to do. I used to hate journaling. Not anymore. That’s been a good thing for me. It’s hard and difficult, but that’s why I like it.

In a couple of days I take the train down to Camarillo and mom and I will hit the clinic for a regular check up.

That’s pretty much it. You’re caught up.

Leukemia and disability journey…

It’s been quite a while since I’ve checked in with my leukemia journey. In fact, it was this past August when I last updated y’all. Sorry.

I really only just got over the GVHD I got back in the late summer. It took it’s toll on me for quite a while. I’ve gotten a little weaker, and just recently started needing a reevaluation of my mental health meds. But as always, I have a good team who thinks outside the box. Since August I’ve been back on prednisone, which sucks bad. This week I’ve switched to hydrocortisone, which will still do the good stuff that prednisone did, but help with some of the side effects. A few other gentle fluctuations in dosages, and I think the next few weeks will show some nice improvement.

This whole thing has been very tough on Deanna and the kids. I’m not so nice. I have several real helps to keep me accountable, and I’ve found a really helpful men’s cancer group at the Mission Hope Cancer Center. I love going to those meetings. The host suffered through the same AML I had, and decided to become a cancer RN. HE GETS ME!

That sorta catches y’all up with my medical process. I had a clinic visit yesterday, and I’ve moved to every 3 weeks for visits. That’s always a nice improvement for me!

Now for the disability update. I haven’t shared as much about this throughout the past 2.5 year journey. But I’ve mentioned that we’re on disability, and we quickly dropped to an income through the state LEO association’s disability insurance plan. I’ve paid into it throughout my career, and it’s much better than state disability. The gist is that we went from comfort to trimming the fat almost every month. Many of my wise friends and family told me to get rid of my flashy 4×4 truck, and I hesitated for a long time. The Lord worked on my heart and I eventually succumbed with joy. I’m glad that my loved ones let the Lord change my heart on this one. We’d have saved a lot more money, sooner, but I may have held a negative attitude about it. I think it worked out in God’s timing.

The biggest reason I’ve been vague with this part of the journey is because it’s a legal process and I did not want to mess anything up, as it relates to my worker’s compensation (4850) case, or my eventual medical retirement. Even still, I won’t release a lot of the details. You should know that the ball is now rolling after having had my medical evaluation by the county’s selected physician. Times are ticking, and we no longer have to “wait for so and so to do something”. In the early months of 2016, we will finalize several things that will allow me to get off disability and prepare for the longtime future.

Feel free to ask questions in person and private, and if I can answer them, I will.

Again, from the bottom of my heart, and my faith that God has used so many of you to bless our family, I say thank you.

AUGUST UPDATE – LEUKEMIA JOURNEY

It’s been a couple months since I’ve posted an update to my progress along this leukemia journey. A little bit has happened, but not a massive amount. Other than having my 1st transplant birthday!

On July 4th, I celebrated one year since having my bone-marrow transplant. The following week we had a little celebration to really celebrate all the great people and families that have helped support us during this journey. I even was granted a single beer reprieve, by my medical team. Just one though. 🙂

This whole process continues to feel like 3 steps forward, and 1 step back. Those single steps backwards can get frustrating, but at least I’m moving forward. I call it good math!

Currently, I’m recovering from a little bit of GVHD (graft versus host disease). If you’ll recall, I had that back in February, along with CDIF and shingles. All that together, kicked my butt, and put me back in the hospital. But weathering GVHD alone, it’s doable at home with some changes to my medications. Unfortunately, I’m back on prednisone, which sucks, but is necessary. We’ve always known that setbacks like this can recall some meds we’re happy to discontinue.

On another front of this journey, we’ve made a few family changes. Being on disability income for over 2 years has really taken it’s tole on us. Earlier this summer Deanna and I decided to have her consider looking for a part time job that would supplement my disability. After some hard work on her part, she landed a great opportunity at a small country school just outside of town, as a special education teacher’s aide. It’s a perfect fit for her, as she has a soft heart for unique kids. This also brought out the idea of taking a pause in our homeschooling adventure, with our younger two. So they’re attending that school, where Deanna works. The older two are just fine continuing their schooling at home, so I guess I’m their “teacher” now. In truth, they’re self-motivated, and really just need to be encouraged every so often.

So that’s what’s going on with us. Any questions, post them in the comments. Love ya’ll!

June Update – Leukemia Journey

My last update was back in the middle of May. Honestly, other than slowly regaining my strength, my progress has been simply been slow and steady. In the mean time if you’re following all of my blog’s posts, you’ve seen a bunch of photographs and some political stuff. That’s closer to the balance of what I tend to post.

I’m the publisher and one of 4 authors to contribute to the PhotoChallenge.org website, which is geared towards helping photographers of all levels challenge themselves to weekly themed challenges and we interact as a community, mostly on our Facebook Group.

I also publish a fatherhood oriented blog that I don’t really advertise or push too much, called ViaPaterna.com. It means the way of the father, in Latin. I’m actually trying to simply write a bulk of articles that cover a wide variety of topics, to build up a large repository of content, before I really start pushing the website. But, you can enjoy the stuff I post there irregularly.

So, back to the update…

Last Prednisone Dose

I did pass a very important milestone this week! I took my last dose of prednisone! That drug was necessary but totally wrecked me. I still have many side effects that will taper off over time; induced diabetes, edema in my legs and feet, and this thing they call “moon face”. I look like I’m still overweight, in the face. The truth is that I’m the skinniest I’ve been since the first years of our marriage. Over the next few weeks and months, I expect to taper off several other meds, and that should continue to help me stabilize my well being and recovery.

I’m trying to expand my PT-oriented exercises and walks. Going on a family hike tonight! Look for the photos!

Another area of growth and struggle has been with my amazing wife. She has carried the burden of nursing me for so very long, and we came to a point where I wasn’t rising to the occasion to start caring for myself when it was clear that I was ready. This became a source of conflict, and we reached out for some help. Our pastor recommended a counselor, and she’s been a tremendous help. A little help with clarifying our expectations. The offering of a few tools to help each of us communicate better. And we’re already doing much better. We hope for this to continue! Many have been praying for this specific issue and we’re quite grateful.

Go Dodgers!

I’ve been cleared to drive and even attended a Dodger game with my parents and my youngest. A few other milestones have come and gone. And I’ve celebrated each one as best we can. Next month I celebrate my Bone Marrow Transplant Birthday, which if you didn’t know, happened on our Independence Day, July 4th, of last year. Within the bone marrow transplant community, the day of your transplant becomes your new birthday, and is a celebration every year. This being my first new birthday, it’s a pretty big deal! It’s also the first chance I’ll have to possibly meet my donor, about which I’m real excited and nervous. It’s up to the donor first, to decide if they want to meet me. I hope they do.

I’m still off work on disability income, which itself is a significant part of the struggle of this journey. We’ve been tested and challenged by the Lord in ways we never knew we could. It’s quite amazing what you can cut and trim, and yet still eat healthy and pay the bills. Our kids struggled more before, but have been slowly coming around to understanding better. I think this path of learning what good stewardship really means has been a lifelong character development school for us all.

So that should catch y’all up with what’s happening with our leukemia journey.