Saturday, December 08, 2007

A Disappointing Setback

Tuesday morning brought a scary and shocking surprise. I had just finished eating a late breakfast and was lying/sitting on the couch. In the mornings I have to take it easy and slow. It takes me a good half hour to an hour to adjust. At any rate, I saw Harley run downstairs and open the door to check on the dogs. That means they are barking at someone who is here usually. When he opened the door I saw the top of some delivery truck.

I rose from the couch to see what was happening. Then I started to get the blacking out episode again. In the past when this has occurred it was only momentary (a blacking out/narrowing of my vision accompanied by light headedness and in extreme rare cases weakness in my arms and legs). Generally I can just stop and stand there to let it surpass or grab on to something for support until is dissipates. However, this was not a minor one.

As you will recall I have been having them for about a month. At my October followup appointment I was showing some anemia from when I was in the hospital. We did the test again Friday December 2nd. While my hematocrit and hemoglobin have improved and are just a hair low (that is the oxygen carrying count in your red blood cells), my body is now really low on steroids and having problems producing its own. My doctor emailed me on Monday and wanted to put me back on the steroids.

So Monday came and I was not thrilled with that news. How many more times in my life do I have to take these steroids? Back in 2005 I had a hard time being well without them (took them on and off for a year). Yet over time steroids take a toll on your body and are not good for long term use. While I have not been sick like in 2005, I have hit a patch of being really tired, weak, and unmotivated. I was waiting for the slow FE (iron) to kick in and making a point to consume more iron rich sources seeing I am not a red meat eater. Avoiding the issue and needing time to think about it, I did not respond back or restart them on Monday as suggested. I wanted to put it off until Tuesday and inquire if there was some kind of natural way to get the steroid levels back on track.

So that is what I did and that brings us back to the original story I was telling you. I remember seeing orange, blue, and white on the top of the truck and then everything started to go black. I knew what was happening but I had nothing to grab on to as I was standing in the middle of the living room. It happened so fast. I could not stand there like before and wait for it to pass.

From my own created version of my memory I dropped to my knees as my legs and arms went numb. I could not respond but in my mind thought it felt nice being down there and just resting. When I came back to this plane of existence Harley was standing over me frantically shaking my shoulder trying to get me to respond. When I got up there were 3 large boxes that had been brought into the house which seemed to just magically appear as I have no recollection of them being carried in.

That was the scary part........realizing my perspective of what happened was not accurate and that I had no memory of seeing them being carried in even though I was right there. In fact, my thoughts on what happened were just that - my thoughts. Harley told me that I had fallen on to the floor, nearly hit my head on the stone coffee table, started convulsing, and then was totally non-responsive. That is kind of freaky and shocking. It made for an emotionally as well as physically exhausting day.

After the event, I got up, took my steroid, and laid back on the couch and slept for an hour or longer. I again took a nap later on that evening. I would have to say that particular day is the most emotional I have ever been while taking the steroids from what I can remember. Now I can somewhat understand what people with depression must go through.

It is all worked out and things are going pretty good. I had to lay off driving until we could assure it was not going to happen again. I did still do my walking with the dogs everyday. There is a neighborhood less than a mile from my house (Daniel's Ranch) where I was able to safely drive and walk around.

On the day it happened and I went for my walk, an ambulance and fire truck oddly (not at all a normal site out here) drove down the cul-de-sac where I was heading. There were no lights flashing on the vehicles and they were not in a rush. At first I had a sad thought that maybe they were too late and that is why they were not in a hurry. Yet, they did not stop at any of the houses. Instead, they turned around in the cul-de-sac and stopped and parked facing me along the wooded side of the neighborhood. Then I had an embarrassing thought. What if they were out checking on me? LOL We waved as I passed and then they went on their way. (Strange coincidence) I asked Harley if he called them but he knew nothing about it.

So my plans for the week to get on a more regular gym schedule fell through as I could not be doing a lot of driving around. Wednesday morning I had a very mild weakness/blacking episode when I got up from my computer chair to grab a book off the top shelf. Putting my arm above my head after just rising made them feel weak and numb again. It did not last long at all and I was able to rest against the bookcase. On Thursday I was feeling pretty good with no episodes throughout the day so I ventured out to the Carnation post office and took the dogs walking on the Snoqualmie Valley Trail. Yesterday I also felt well so I drove to Redmond (had to go to the post office again) and then we walked around Redmond Town Center where the twinkling Christmas lights lit our path as daylight vanished. Afterward, I stopped off at the gym for a 50 minute workout as I have not been there since Monday.

Today was another day I felt rather well and no weakness or blacking out episodes. Therefore, I ventured out a little further and drove to Issaquah where I stopped at my sister's, ran some errands, and enjoyed the sunset and Christmas lights on our walk in the Issaquah Highlands. I was planning to go to the gym in Redmond too but I did not make it back in time to have enough time to workout. The gym closes early on Saturday and 20 minutes allotted for a workout does not make it worth the 15 minute drive to get there.

So what's up with the steroids? Originally the plan was to take a dose of 2 mg for 3 days and then 1 mg for 3 weeks before a taper. Since the "incident", I am to take 2 mg a day until December 12th and then 1 mg for 3 weeks, and then we will try tapering. That is at least a month on them again. Unfortunately, there really is no other alternative to get me back on track. Maybe I will not have the unwanted side effects as I do not have enough of them and we are trying to just get back to what it normally should be instead of more than what it should be. I am hoping anyway.

For the time being, I have concluded that I should just take advantage of the situation and seek to make it work best for me. Generally speaking, steroids give you more energy and motivation. Hence, I should put that energy toward things I need to get done here and also to my return to working out now that I can lift freely again. I lost a great deal of strength and lifting the dang garage door feels like I am trying to pick up a 500 pound motorcycle!

About the eye appointment I was to have this week.....Unbelievably Interstate 5 from Seattle to Portland was closed! It was flooded! We had snow last weekend that melted by Sunday (about 6 inches - There was enough snow Saturday evening for Harley to make a giant snowman just on the deck!) Then it warmed into the 50s and we got hammered with pouring rain! On the way to Portland there is a river south of Olympia. From what I heard there is some dam that broke and the freeway was flooded and broken up. Of course it was not entirely impossible to get there but a VERY LONG detour to the Yakima in the center of the state and then down to Portland (hours out of the way). Thus, we had to cancel and come to find out we could not reschedule. On that particular day as fate would have it, the clinic learned that the doctor was being transferred to California with a couple weeks!This is very disappointing indeed as we really liked that doctor when we were in the hospital. My general internist knows him too as he did his residency there.

What is the big deal you may wonder? The doctor is a neuro-ophthalmalogist. So that means he is a very specialized doctor and there are few of them in the country. He is not just an eye doctor (optomitrist) but an ophthalmalogist who is board certified also in neurology. Therefore, he has an understanding of vision problems related to the central nervous system and brain tumors which is where I am one of the rare few that it applies. Now I do have one up here, but the doctor in Portland has experience with others who have what I have (NF2) which is also very specialized. I have rare things that have happened and are happening to my vision that I want answers on. Currently some of these issues are unexplored and I need someone who is interested and willing to work to solve them for us (those with NF2).


Anonymous said...

Be careful, Beck. I'm concerned for you. I totally unerstand the compulsion to push and keep improving, but please be careful. It sounds like your body is begging for some slack to recoup and adjust (and deal with what's still there).

I hope you are reporting the loss of awareness/consciousness and numbness to your neuro. Are you on an anti-seizure med? It sounds like you had a seizure/several seizures. (There are several kinds. Harley needs to be up on what happens in status epilepticus, in case that ever happens, so he can act accordingly.) You should not be driving, especially if you don't experience a prolonged aura/warning beforehandthat would allow you to pull over and notify someone before an event. :(

Steroids can kick back (and the apparent energy boost is deceiving), so be careful while you are on them. Also, we can develop intolerance of meds after using them. This has happened with a steroid and anti-seizure med for me, after years of "effective" use. Now they are toxic to me and cause severe reactions (including blacking out, numbness, and loss of all strength). I'd go slow until things even out. The brainstem tumor remaining could be source of fatigue and decreased energy. Having just had surgery, and still having masses in your head make you susceptible to seizures, though. Also, check out steroid myopathy, to understand some of what your body is still dealing with (and being put through more with additional roid cycles).

I hope this week is kinder to you.

Hugs and healing vibes,

Anonymous said...

That's quite a scary event. I agree with Jamie. You should not be driving until you know more about what caused the seizure and the odds of it happening again. If the same incident occurred while you were alone behind the wheel you almost certainly would have crashed (possibly head on and who knows at what speed). On a different note, I think your "Can You Hear the Crickets" story is excellent. We'll miss you two at Christmas and hope you have a happy New Year!


Your brother