Feeling best since this whole ordeal started 3 years ago!

A quick update on how things are going. I am still taking the Depakote, it is is still working well for me. It gives me a quite upset stomach, but virtually no headaches. I able to work with no problems now, and I have energy at the end of the day. Better is better. My son and I have joined a Saturday basketball league. I'm doing projects around the house. Gone is that feeling that I'm ready to pass out when I get home from work. I hope this keeps working.

We just passed the the 3rd anniversary since my diagnosis. Boy it seems a lot longer.

Next MRI in a couple weeks.

Happy Thanksgiving to you and yours,

Ed

My new friend Depakote

In my constant battle against constant, debilitating headaches for two years now see, I have found another tool that helps relieve this pain, Depakote. I went to see my general doctor and told him of all the things I tried, and asked what else I could do. He recommended seeing a local neurologist tho get her opinion. Last week I got in too see her and told her my story. She says, " Most of the medications you take are to treat headaches, have you tried any medications to prevent headaches?" My jaw dropped. There are medications that PREVENT headaches? I picked up the Rx last week, been taking 1000mg/day for 5 days now and feel 85% better. Only side effect for me is dry mouth. Lets all hope this turns out to be a long term solution.

Next MRI is in December. No new or worsening symptoms so I am not concerned.


-Ed

18 mo Post-treatment MRI OK, First fall

Good news first, the last MRI and visit to the oncologist went very well. The doctor originally said that would be on the MRI-visit-every-3-months schedule for 5 years. At 18 months this visit, he said that he had reviewed all the MRI's since surgery, and because of the gross lack of tumor progress, he moved the MRI/appointment frequency from every 3 months up to every 6. That's a huge vote of confidence from a doctor that sees these types of cases every day.

So that was about a month ago. That doctor at Rush University was never really interested in addressing my ongoing problems, so I promised myself that I would contact a local neurologist to help me. Well, now I have some extra motivation to initiate that.

This morning, after my usual morning routine, I headed out to the car to go to work. As I stepped into the garage, my left leg all the sudden decided it wanted to take a nap. It collapsed underneath me like it was not even there. My head broke the fall by bouncing off my wife's van, then I hit the concrete 3 steps down. Ouch. This weakness in my leg is common from a sitting position. It is pretty frequent that when I stand from sitting, I use my arms a brace myself to make sure lefty is gonna do his job. Once I start walking I would not have any problems. This was the first time lefty gave out while I was walking. Bad news it was on stairs.

Plowing Ahead

I have not posted in a while, not much has changed in tumor land. The Ativan is still doing a decent job at keeping the chronic headaches at bay, but I can tell my body is starting to develop a tolerance to it. Luckily, as I had hoped, The Tramadol I used for headaches a year ago and developed a tolerance to it, is now effective. I have the quarterly MRI this month, not expecting any changes. I still have flashbacks to the state when I was in radiation and chemo treatment. Its a overwhelming feeling of exhaustion and nausea that lasts for about a week. These 'attacks' come on once every three months. I do not know what brings these on and have nothing to fight it except sleep. Where I normally get 8 hrs sleep per night, when these flashbacks happen I will be in bed for two days.

I am still working full time as a engineer. My logic skills are sill sharp as a tack.
This spring I volunteered as an assistant coach on my 14yr old's baseball team. For those of you that know me personally, you can get up from the floor. We know that I never played a game of baseball in my life. I told the coach that, but there were not enough volunteers. We have 2-3 games through the week and practice both Saturday and Sunday. This is a lot of exercise getting the boys warmed up and running drills with them. Combined with work, this takes ALL of my energy. I regret that my garage band has not played in a while - sorry guys.

So I keeping up the fight, plowing through life in the face of my tumor.

Another Solution for Cronic Headache

Ever since last October (see this post) I have been trying various 'natural' methods to curb the intensity of my daily headaches. I cut back on coffee and sugar. I would regularly take short breaks to meditate and attempt to flush the pain out of my head. All of these had limited success on a daily basis, and did nothing to prevent the major headache attacks that would last for a few days.  Two weeks ago one of these attacks came on that did not dissipate in the usual three days. My head hurt so bad I had to take a few days off of work. I started to cry two times trying to go to sleep in fear that I was not going to wake up because the pain was so intense.   

 

Not Funny,  not me, but I can relate

But just as I stumbled upon Tramadol, I made another discovery last week that virtually eliminates my headaches. I had woken up at 12:30am one day last week with my head screaming in pain. Could not lay there in bed, standing up and moving around makes it feel a little better. After trolling around the house finding quite things to do,  it was 3am, and I needed to 'wake up' for work at 6 - something had to be done. I had a prescription for Ativan (wiki) to help me sleep, with strict instructions from the doctor to only take at night. I decided to take it, rationalizing that if I oversleep and am late for work, so be it. At this crossing I was gonna miss work anyway. I took one dose, and went to sleep as expected. The miracle was that my biological clock woke me up at 6 as usual, and the headache was practically gone! That day I put two and two together and hypothesized that the reason I can sleep with the Ativan was that it makes my headache go away. I felt pretty good all that day. Now "practically gone" to me means I am to the point where it feels like a couple of aspirins would take care of it. My daily headaches are 100x worse than this, so I am happy. Next I set out to prove my hypothesis that Ativan quells my headaches. The next day, I did not take a Ativan at night, but in the morning. Good news was that I felt much better that day. Bad news was that was my last dose from a prescription with 0 refils. Time to call the doctor and see if I can talk him into prescribing Ativan  for daily use for headaches. Call went well, I got a new Rx (1mg 3x/day), and because of Ativan's anti-seizure properties, he said that we can look into tapering off the Keppra I take for seizures.

Lets hope that I do not build a tolerance to this as the wiki talks about.  If so, I will try to go back to Tramadol, which had the same effects for me but eventually developed a tolerance.
 

MRI Shows tumor still stable

I had an MRI and oncologist appointment today, all good news.

The oncologist made some unsolicited comments. "Your genetic markers are very good. I am not worried about you surviving this."

Makes me wonder if he started reading my blog....