Saturday, July 9, 2016

Going Through Hell On A Roller Coaster

I had four medical appointments in three days. Two on Wednesday, two on Friday. So, Rachel and I decided to stay in Seattle three nights and have a day and a half of vacation, something we have not done in at least ten years. I hope to hell it's not another ten years before our next vacation.

Tuesday night: We arrive in Seattle at 10:30pm and check-in at the hotel. I thought this was a very good sign:


A perfect room number for a math teacher.

Wednesday morning: Met with the surgeon who did the original big surgery back at the end of May. This was a follow-up to get the go ahead to begin radiation. Everything looks good, so radiation is a go.

Right after he left we met with the speech therapist. I've met with her several times before as she has always been present during my appointments with the lady ENT at Swedish. She gave me some swallowing exercises because in the not too distant future (probably 2-3 weeks) I will have difficulty swallowing. The goal is to not get a g-tube so I need to be able to keep swallowing, no matter how painful it may be.

After we met with her, Rachel and I had lunch at Piroshkis. We'll probably go back again in the future. It was pretty good. Our good friend Jeff joined us there and then he dropped us off at Half-Price Books while he went back to his place to finish up his work for the day. I could spend hours in Half-Price Books. I love used bookstores. Yes, we found some good stuff.

Rachel and I, then, went for a little walk around the area we were in, actually headed to a real comic book store. It was nice to just walk with my wife on this beautiful day in the big city. I'm not a big comic book guy but it did give us an endpoint to walk toward. Jeff picked us up there and we all three headed to dinner. I don't remember the name of the place we went to for dinner, but man, that was some good Italian food. It was a good ending to a great day.

Thursday morning: Rachel and I slept in (when does that ever happen?). This was the day we had planned to be our "vacation" day. We were going to be tourists, so we headed to the EMP Museum. We spent a few hours around the Seattle Center, mainly at the EMP Museum. It was frivolous and it was fun. I really liked the history of the guitar exhibit. The Nirvana and Hendrix exhibits were cool, too, but, to me, not as cool as the guitar one.

I also really enjoyed the Science Fiction exhibit, Infinite Worlds. There was a lot of movie and television memorabilia. Stuff from Star Wars, Aliens, Dr. Who, and even Mork and Mindy.

The first exhibit we went to, though, was the Star Trek exhibit. On display were several costumes worn by the cast members during filming of the various TV shows and movies, props, such as weapons and miniatures, and even the bridge from the original series. What the exhibit really made me want to do was go home and watch all six Star Trek series. Yes, I'll probably do that. My kids need to watch those shows.

After spending a few hours at the EMP Museum we headed back to the hotel. Jeff picked us up a little while later and we hit, yet another used bookstore (I have an addiction), and then we had dinner.

I was only allowed to sleep four hours or less on Thursday night because I had an EEG scheduled on Friday morning. So while Rachel slept, I stayed up. I slept from 1:00am to 5:00am, and then waited for my wife to wake up and join the living. That took for what seemed like forever.

Friday morning: Had 24 electrodes placed on my head for the EEG. They flashed lights at me and then had me do some quick breathing, all in order to see if I would have a seizure. I didn't. Then I was to rest (sleep if I could) for the next half an hour. I actually did sleep for about 20 minutes. Then the tech woke me up, cleaned my head, and then I was done. Rachel, Jeff, and I then went and had lunch.

Friday afternoon: Met with the epileptologist. This is my third doctor at Swedish. All three have been fantastic. The EEG was normal. That's not really important, though. After all, it was just a quick snapshot, like 30 minutes, out of my day. But at least nothing was glaringly wrong.

The MRI, however, was not normal.

This was the MRI that was taken at the local hospital on the same day I had a seizure on the operating table. Recall that there were "spots" on my brain. We'll now call these "spots" lesions. I have several lesions on my brain. One in particular is located on my temporal lobe. This lesion is probably why I had a seizure.

Here's the best guess as to why I'm in this situation: When I had staph endocarditis back in 2003-2004 and was hospitalized for 17 days, I had petechiae several places on my body. They were like little hickeys except for the ones that ended up at the end of my finger and toe. Those areas ended up turning completely black as the blood vessels there burst.

Essentially what happened was the bacteria that was growing on my aortic heart valve started breaking off and traveling through my body because, you know, the circulatory system and everything. I remember getting an EKG (several actually why I was in the hospital during those 17 days) and actually seeing the bacteria, which looked huge on the screen, flopping around every time my heart pumped. It was amazing. The violent pumping of my heart made this bacteria flop around, literally like a fish out of water. It was pretty cool to see. Not to experience, mind you, but to see it was amazing.

I remember one of the many doctors I had during that adventure was doing the EKG on me one day. This was after the antibiotics had started working and I was starting to feel a little bit better. While he had the EKG gadget on my chest, he pointed at the screen and said, "See that. That's the bacteria." And it was violently flopping around with every pump. "We don't want that to break off your heart valve."

"Why?" I ask.

"We don't know where it might end up," he answered.

In other words, we don't know where it will go, but it could go somewhere that could kill you. Like my brain or my lungs.

A few days later I had another EKG done. When I looked at the screen I could see my two heart valves, but the bacteria that had been flopping around so violently before was no longer there. It had broken off my heart valve.

I was devastated.

When they got me back to my hospital room, I literally just sat on the edge of the bed and cried.

A nurse walked in on me and all I could do was hug her while I kept crying.

I knew I was dead.

Obviously I didn't die, but at the time, I thought that was it for me.

I had several MRI's during that hospital stay and they showed that I had petechiae on my brain. Several places on my brain, actually. And this is what we think caused those lesions that are now present on my brain, including the one that probably caused my seizure. The bacteria traveled to those places on my brain and caused the blood vessels to burst.

Very little is 100% positive in medical care, but this is our best guess as to what has happened.

So I now have a seizure disorder. All it takes is one seizure for you to meet the new definition. I'll probably be on anti-seizure medication for the rest of my life.

That's fine.

Essentially, I had a stroke and didn't even know it.

The really bad news, though, is that by law I am not allowed to drive for six months (provided I don't have another seizure). That's January at the earliest.

This will make things difficult for the Anderson household.

Chemo and radiation begin next week. Radiation is Monday-Friday which means I need to be at the Cancer Center on those days to get treatment. For the next seven weeks. Not being able to drive myself there has put a burden on our daily schedule. Despite this difficult situation, we'll figure something out. Getting to those treatments is the top priority for me and my family.

There's also no swimming or operating heavy equipment, but that's ok. It's just the no driving that is difficult to deal with.

I next see an expert on strokes to make sure there's nothing that's been missed. I'll be doing that after the chemo and radiation treatments have finished. At least that's the plan right now.

As you know, I was unable to get a chemo port because of the seizure. So now the plan is to get a PICC line. Yeah, I said I didn't want a PICC line, but that's what has to happen. I get that early next week because that's how they are going to administer the chemotherapy. I'm not thrilled about it, but it is what it is.

My dad told me once, when he was dealing with his cancer, that getting old is hell. He was making a joke at the time, but underlined that joke with the seriousness of his and my mom's health issues.

I think it's more like: Getting old is like going through hell on a roller coaster.

There are ups and downs and curves and sudden drops and giant hills to climb.

You know, it's just life.

If you're lucky you get to ride that roller coaster for quite awhile.

I'm strapped in, but I refuse to keep my arms and hands inside the car at all times.

Here we go.


4 comments:

  1. Shirley McCullough CrittendenJuly 9, 2016 at 7:58 PM

    Randy your way of explaining things is amazing. I admire you for the way you are fighting. You will beat this ugly thing that's being thrown in your path. We serve a great God and I,along with many more of your friends, are holding you up in prayer. Wish we lived beside you, cricket would be your daily driver. Love ya

    ReplyDelete
    Replies
    1. Thank you, Shirley. I appreciate it. Love you, too.

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    2. Thank you, Shirley. I appreciate it. Love you, too.

      Delete
  2. Keep writing and I'll keep reading.

    ReplyDelete