Now that you’re all caught up on my situation. No wheels, basically a retired guy trying to be more practical, get into better shape, (FYI, I’m at my Junior High School weight), and use my funds more wisely…I’ve got a whole new world to explore.
So right off the bat, I started riding the bus, around here we call it SMAT, which is short for Santa Maria Area Transit. Our local bus system rocks! It’s tied into the transit part of Google Maps, so I simply turn on the “Transit” option on Google Maps, and presto, the schedule is right there. How far I need to walk, alternate routes, it’s all there. Very convenient! So for the last week or so, I’ve been taking the bus everywhere. I meet new people, 99% of the bus drivers are helpful and explain everything I need to know. And it’s dirt cheap!
Then, when I’m in a bind, or it’s later in the day, I use Uber. Came highly recommended, and it’s also quite affordable. And for the next couple of weeks, as my claim slowly passes through my auto insurance, they’re covering what I’ve spent on Uber accept for a couple of long trips I’ve taken that goes over their daily limit.
Overall, I’ve met new people, walked a ton just to get from station to station…kinda on purpose, and found some of the best new places to eat around our cool little country/Mexican Central Coast Valley. With all the walking, I’m stoked that the Apple Health app has the steps recording feature. Because when I set out, I’m not thinking…Strava. So, what follows is a handful of highlighted days where my combined steps was kinda awesome for a guy in my lack of good leg fitness.
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.
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!
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.
At the outset of this week, I was flabbergasted about where I might capture a nice photograph of a rooster.
But then I remembered this little known cultural fact in the small village of Arroyo Grande, just about 20 minutes north of me, where this flock of roosters, who’ve been a bit tamed, hang around a nice walking party with a decorative bridge.
Just as soon as Eric posted this week’s theme, I knew what I wanted to capture. Our normally boring Central Coast weather has been so dynamic and beautiful. I knew that the Guadalupe Veteran’s Memorial was going to be my subject. The potential skyline drama, the numerous headstones with history and pop, I knew I might create something nice.
This week’s theme called for a self-portrait, without myself.So, the goal was to represent me in a way that did not include me. Right away I knew what I wanted to photograph. These pair of objects represent me well. I hope you enjoy them!
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.
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. 🙂