Confused? Just Wait…

Well, I wasn’t supposed to see my Neurologist again for another 6 months but because of my recent daytrips to Emergency I was asked to go down for an appointment today which worked out perfectly because I already had an appointment with my Endocrinologist this afternoon. Things were definitely looking good this morning and I just knew everything was going to go my way. When I got in to see Dr. Gentili (my new Neurologist) he took a look at my most recent MRI and let me know that the cyst was still refilling but not to worry because it was not as big as before. Not worry? I gently reminded him that while it may not be as big as before it was still causing daily headaches and double vision. I told him how frustrated I was by all of this. Thankfully he let me know that I was not the only one who was frustrated – they were too. Well that put my mind at ease. “Can’t you just cut this thing out?” I was told that this was not an option. Because of the location of the cyst, there is a great danger of the operation permanently affecting my vision, my memory and my hypothalamus. “Okay, what can we do then?” It seems that reradiating people sometimes works but I’ve already done that maximum of that, so that was out. I was then told that “we” could start an injection treatment that involves receiving daily injections of a compound into my head for a month that will “hopefully” dry out the cyst. Sounded good to me (what options did I have?). Great, so they’ll talk to some other doctors about the procedure (it’s never been done before) and order the compound. That way, the next time I have to go down to Emergency they’ll be ready for me. “so, what do I do in the meantime?” Are you ready for this? “Hang in there”. Hang in ther? Are you kidding me? All I could picture was that stupid poster of the cat hanging from the tree. That’s a pretty easy thing for them to say but I have to live with this and it’s not only affecting me but my family as well. I was pissed. Luckily, on my way out I ran into my first Neurosurgeon Dr. Bernstein and he asked me how I was. I told him everything was crappy (now I’m paraphrasing here because while the British may keep a stiff upper lip, I’m Irish and we tell you how the fuck we feel). He reassured me that he would take a look at my scans as well and see if he could add anything which immediately made me feel better – stilled pissed but better. Now I was off to PMH TO SEE Dr. Ezzat my Endocrinologist.

When Dr. Ezzat asked me how my first appointment went I let him know (Irish). His response was “I can’t understand why he won’t just operate. I think I’ll call him.” I reminded him about the whole vision / memory / major gland thing and he asked what other options there were. I mentioned the injections and he snapped. “No, I don’t want to do those. Do you know what the side-effects are? Loss of weight, loss of appetite and vomiting on a daily basis” Suddenly this didn’t seem like the best option anymore. I asked if there were any other fun options and you know what? There was. I could take a pill that might do the same thing as the injections and the only side-effect to that is a severe depletion of white blood cells. I think my friend Paul said it best when he told me I had two choices “Shit on a plate or shit in a bowl.”

Now, lets sum up what we’ve all learned today shall we? One Doctor wants to operate and one doesn’t. One Doctor wants to do daily injections into my skull and one doesn’t. Then there’s a third Doctor that’s going to look at things and see what’s going on. Anyone else have one of those deep confusion headaches? Time for some Advil. All I can say at this point is that no matter what happens in the weeks ahead you all know I’m going to be just fine because remember, I’m the guy that put the F.U. in FUN.

Just When I Thought I Was Out...

This bloody cyst drags me back in again! Wow, I can’t believe I haven’t updated since March. The good thing about that is that that’s because there hasn’t been much news: Until recently. To say that things have not been going as expected lately may be a bit of an understatement. After my recent 2 month "vacation" I was feeling pretty good about things. My cyst had gotten smaller and now it had not needed draining for 8 weeks (instead of the 4 -5 days that used to be the norm). Then one fine day about 3 weeks ago I went for a great dinner at the Coleman compound and had a great time. The next morning I awoke with the worst headache and the good old double vision which meant it was time for another trip to Emergency to have my cyst drained. Disappointing, but hey, it was a good 2 months. The next Wednesday I had an appointment with my Neurosurgeon. Now this was weird: I was taken into a boardroom instead of an examination room and I sat down at a long conference table with about ten doctors who were looking at slides of my tumours (colour slides taken during my operation – gross), and my long list of CT scans with the dates of each one. While they were discussing my case like I wasn’t there they seemed very optimistic about how long in-between treatments it took so they scheduled an appointment for 6 months from that date. Things were looking up again. Unfortunately I had to make another unscheduled trip last Wednesday for another drainage. When I asked them why this thing keeps popping back up again they told me they didn't know but they were "working on it" (so I've got that going for me). As always, I guess I'll just keep rolling with the punches and keep up the F.U. attitude and keep updating as things happen. Until then, thank-you all again for your concern and kind words.