The Best Laid Plans

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So when I started this blog my intentions were to go day by day and document things that way.

Well……

We’ll get to some of that, but the problem is that my memory of those first few days is especially hazy so I got mired in that and didn’t post anything. So let me just get you caught up to where I am now.

For starters, here’s what I posted on Facebook * on June 10, 2016:

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So I walked into City of Hope yesterday and they were celebrating Cancer Survivor’s Day. They asked me “How many years?” I said “Only six months, do I still qualify?

Apparently I do.

YES! Today marks six months since, as Tania says, “Cancer came down with a bad case of Louie.”

The Dr. told us that I could expect to live 14 weeks without treatment and 18-24 months with treatment, but that “a handful” of his patients have gone five years or more. Well I promise you I’m joining that handful.

So I feel like I’m at a landmark, and I’m not just surviving, I’m kicking butt. Feeling good most days , MRIs don’t show anything very worrisome, and I start another course of chemo next week.

I’m not taking this lightly, I assure you. But I’m also confident that I’m a fighter with a great set of family and friends and a big God. Thank you all for your love, prayers, and support 💖💗👊

Louie

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So that’s six months. The visit to City of Hope was my first since I decided to switch. I didn’t really have any complaints at the hospital/cancer center where I was going, but I was listening to a webinar on brain tumors a while back and they used the phrase “standard of care.” it struck me when I heard that, do I want the “standard” of care or do I want cutting edge care at a research institution that’s known internationally?

I’m in Covina and COH’s main campus is in Duarte. About the same distance as where I was going. They also have some community locations that are closer, but it’s two buses and a train, so it’s doable.

Do you know that I can’t drive anymore? I’ll get back to that in the future. I promise.

I’ve had four MRIs total. My Dr. at COH was concerned enough to order a PET scan and follow-up MRI. She didn’t find anything hugely glaring but saw some differences. She said that it may be because they’re using a more powerful magnet or that my head was positioned differently. I think it’s because they put on the first Captain America for me and it’s the Marvel effect.

It’s a real thing. That I just made up.

So anyway I asked them to schedule everything on the same day and they obliged with a vengeance. My appointment is on July 6 starting with the PET scan at 6:45.

AM.

If anybody ever questions my commitment to fighting this thing…I’m taking two buses and a train to get to COH at 6 freaking 45 am.

Oh my goodness, I’d better stop otherwise I’ll never get this posted. Just a quick, self serving note before I go: . My medical expenses can pile up although I did get Obamacare in time. I am on California Disability and permanent Social Security Disability should start in July, but that’s what the old folks call a “fixed income.” If you feel like you can help financially, click on the GoFundMe link on the left of this page. If you can’t give $$$, I get it, believe me.

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* Re. Facebook, I would love to get new friends from this blog, but let’s do it this way: If I don’t know you yet, please first like the blog’s Facebook page. That way when I see your name requesting friendship, I’ll know you’re not a bot or somebody on a phishing trip.

I Should Have Known Something Was Wrong…

Day 1 – December 6, 2015

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I should have something was wrong that Sunday morning when I couldn’t figure out how to zip up my sweater. I was just leaving for church so I was going to wear my nice(ish) sweater…and I couldn’t figure out how to get the darn zipper started.

Now, understand that I’m 57 years old. I have mastered the fine art of zipper zippering for…oh…five or six years at least. But not this morning. Not this sweater anyway. Mildly frustrated but faced with a drive to Pasadena I grabbed a much more casual sweatshirt, zipped that one up with no difficulty, and headed out.

Looking back, I should have known something was wrong back in November when I started to see strange things on TV. I would be watching The Walking Dead where you can reasonably expect someone to pull a gun and point it in your direction, and then it would switch to a commercial of a dog and yet I would still see in my mind the almost ghostly image of the gun being pulled. And then it would happen in the next scene or commercial whether there was a gun or not, usually on the left side of the screen. And it would go on like that. Gun. Gun. Gun. Until I said to myself “You need a nap,” and turn the screen off.

I definitely should have known something was wrong about a week earlier when I turned left onto oncoming traffic. Or the day before. On Saturday when I was changing lanes, moving right to left, blinkers on, not speeding, then then I side swipe into another vehicle. I pulled over to the nearest side street. Waited to exchange info, they didn’t show up.

I should have also thought about the headaches and mild nausea. But sometimes you don’t know something’s wrong when what’s wrong is your brain.

We count on our brain to tell us these things. If something is wrong with my foot I will receive trouble signals in the form of pain. This pain will slap me upside the head and say, “Hey Dummy, what’s up with your foot?”

But if the something that is wrong is actually your brain, how can it tell you? It suddenly loses all communication skills and slinks off into the corner like a sick dog and starts whimpering.

Or pulls a gun on you.

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It’s always been complicated between my brain and I. In many ways my brain is a good one. It can write halfway decently, can remember faces if not always names, and a few good jokes. But it also has presented me with some issues: I have what I call my “unholy trinity” of mental illnesses. These are chronic depression, ADHD, and possibly a mild case of Asperger’s.

My brain, specifically the depression, caused me to lose three jobs in a row in the 00s, get evicted from my apartment, blow through what little savings and retirement I and and eventually move to the South for four years while I recovered with the help of my Mother and sisters. I finally moved back in 2012 and have been working and putting my life back together.

So…yes…it’s been a little complicated between my brain and I, and now the darn thing has just decided to attack me.

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It was Tania, my ex, who noticed that something was wrong. Tania and I have been legally separated for ten years but have remained friends and co-parents of our 12 year old daughter whom I will call Boodles (my boo, whom I love oodles). Boodles is in the youth choir and was singing in church that morning. Tania had texted me where she was sitting but when I came in to church I couldn’t find her. Although she was right in front of me. Just a few feet away, and…as she tells it…the only black person in the sanctuary at the time.

That was the first thing. But the odd behavior (even odder than my default setting) continued through lunch and then by the time she had observed me all day she started to become concerned. The last major clue was when Boodles trying to teach me a simple card game and I just wasn’t getting it. I couldn’t stack the cards in the right order etc.

I was about ready to say good night and head back to Orange County when Tania pulled me into her laundry room. She said, “I’ve known you a long time. You’re not right tonight.” She outlined all the the things that she had observed and asked me if I was off my high blood pressure meds.

I was.

She asked me to go to CVS and get it checked and if it was over 130 to go to the ER. Reluctantly I agreed but by this time the pharmacies at both CVS and Walgreens near Tania’s house were closed so I couldn’t check it.

At this point, I was starting to get worried. I called Tania and told her that I needed to go to the ER, but I didn’t know how to get there. Now, you must understand that I lived at the house Tania and Boodles still own and two apartments nearby. I know the area quite well. She tried to tell me what street it was on but she could tell I wasn’t understanding. Finally she said to come back to the house and I could follow her.

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Of course it took me a half hour to make the ten minute trip to her house and by the time I got there I was hyperventilating. She got in her car and had me follow her to the ER because there was no room in her driveway and overnight parking on her street is ticketed.

I was sure that I was stroking out and it was entirely my fault. My employer doesn’t offer any benefits but I did sign up through Covered California, but I had let it lapse because I was having a hard time making the premiums. This meant that I was out of my high blood pressure pills. I was going to do something about that…I swear.

At the ER they checked me out and apparently ruled out a stroke but my BP was certainly at stroke level: 237/134. Yikes, it’s a miracle I didn’t just explode like somebody in the movie Scanners. At this point Tania went home to bed. So they made me change into the hospital gown and wheeled me into the ER hallway. The number one priority was getting the BP down, but it seemed that they noticed something else was wrong.