Its Back :(

I had my bi-annual MRI check up yesterday and got some bad news. A new tumour has started to form near the site of the old one. The good news is that it is pretty small (think pencil eraser) - so it was caught early. I was very surprised by this news, I have been feeling great, and still do. I did not even bring my notepad to the appointment as I did every other time.

My neuro-oncologist said that I have two options, back on Temodar chemotherapy for 6 months, or do a couple sessions of targeted radiation. His recommendation was the chemo.

I need to make an appointment with the radiation oncologist to talk about the radiation, but I am not too thrilled about that prospect for two reasons. I attribute my ongoing headache problem to the radiation I got for this three years ago. Secondly, with my tumour being 'diffuse' they cannot tell the extents of the new tumour. I have been told many times the the MRI only tells part of the story for diffuse tumours, they spread out undetected microscopically. I am skeptical that they can target a 'small' tumour when they don't know exactly where it is. 

Of course, now that I know its there I can feel it in my head.

I am going to keep my chin up and do what I gotta do to get through this.

Living Large - Hiking in the mountains

Hello all,
Things are going great for me. I have challenged myself once more to get back to normal life by taking a camping trip in the mountains. I was pretty worried as this is rather strenuous, sleeping in a tent in black bear country plus the physical demands of hiking in the mountains. The trip went well. My son helped out a lot with setting up camp and cooking. No headache attacks. We hiked about 10 miles on a beautiful sunny day.

Take care,
Ed

My Son and I in the Smoky Mountains

December '13 MRI Stable

Quick update...
My 6 month MRI in December was stable. Meeting with the oncologist was all of 5 minutes.
Depakote is still doing a good job at keeping the headaches at bay.
I have joined a father-son basketball league. Lots of exercise, pushing my limits.
Very rarely thinking about my tumor.

Life is good.

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.