Tuesday, January 13, 2009

The Month in Review 1-13-2009

Ok, so it's only the 13th... shoot me. LOL

  • I am 7 months since having surgery to remove my brain tumor
  • I am 3 months since ending radiation
Medically - I'm just going to jump back to the first of the year and summarize all that's happened since. The appointment with the Retina Specialist is the 23rd so no news on my optic nerve/possible pressure in my head.

Some of you may have heard that I did finally get a call from my NeuroSurgeon's Assistant on the 8th. (I did not make a formal announcement of this.) Anyway, I got the response from him that I expected. It's an emergency we want you here by Monday for an MRI... no your facility is not suitable... no we can not do it over the phone I want to see you in person... possible regrowth... yadda... yadda... yadda. Every word that was said went in one ear and out the other. I already had an opinion that it was necrosis and not regrowth. If it was such a big emergency why did it take more than four days to call me and tell me this? Why must it be done there and not where all of my other MRIs have been? Why can't it be done over the phone? Well, it didn't matter the reasons and instead I informed them that I was changing doctors to someone locally. Again they emphasized the "big emergency" to get another MRI and I just said my new doctor will handle it.

So why did I take his opinion "with a grain of salt?" It's because I got a hold of some of my records from them and I'm beginning to question whether he is even looking at my chart. Why? Anyone who has read my story will be able to tell you in just the first few lines of the referal he wrote to my Radiation Oncologist. "Patient presented to clinic with severe right sided headache. CT scan was performed showing area of questionable origin. MRI was found confirming right sided lesion." For those that don't know my story, you know that I am still asymptomatic (no symptoms), my only CT scan was in the hospital after surgery, and the MRI was done because of being hit with a baseball causing inflammation to my trigeminal nerve. Where they came up with this story I have no clue. So that raised flags to say the least but that wasn't the last of it. My pathology report from surgery states that the tested lesion was from a "left frontal lobe lesion". It is stated as such in multiple locations including notes from the operating room. Well, my MRIs clearly show it is right frontal lobe as does the scar, major loss of hair, etc. Where they got left frontal lobe I have no clue but I assure you that if it was in the left, I would not have had surgery in Chicago but at either Duke or NIH. Therefore, I have seriously questioned if I even have a malignant tumor at this point.

Anyway, today I saw my Neurologist and he agreed to take over my care. After filling him in, he agreed he didn't understand the NS's reasoning to come up there other than it was money in his facilities pocket not my local clinic. He also agreed the guy was probably using scare tactics to get his way. It failed. He went on to ask me why I didn't choose chemo and I explained I didn't want to use all my options on an asymptomatic and unchanging tumor. He said that was good thinking and honestly he doesn't think that chemo is that effective on my type of cancer anyway. He assured me he would have done the same thing. Keep the options open. So anyway, I now have a doctor that not only sees things as I do but is willing to actually listen to me and not just be his way or the high way. He did look at my last scan and was confused in what the NS was seeing that concerned him. The only thing he pointed out was necrosis and edema both of which is normal at this stage in the journey. He is scheduling out my next MRI for mid February. If there is no change he will move me to six months.

So medically I'm in a good position. (Aside from the 107 errors I found in my medical records.)

Emotionally - I am still finding myself to be a bit quicker tempered than I was pre-radiation/surgery but it is at least manageable. I have had a few blow ups I would have normally let slide but honestly it was probably time for some of them anyway. I won't go into any more details here for now.

Mentally - I see progress by the day in this category. For the first time in ages I was able to meditate for a full 30 minutes. I used to do it for 30 to an hour at least three times a week. I was lucky to get 10 minutes before meds.

Physically - My energy level continues to improve with each day. I can get through an entire day at work and make it home still able to do things around the house. Before Christmas holiday I was unable to do this. I am also able to work in a 30 minute WiiFit workout about three or four days a week. (I think physically I could do it daily but other things prevent me from having time every day.) I have now managed to lose 20 pounds of my steroid weight and I'm heading back towards the weight I wish to be.

I am also slowly building up my stamina and strength. Stamina wise I can do the entire aerobics portion of WiiFit followed by my minutes to finish, without being exhausted. (This might even be better than before surgery. I'll be able to say more certainly when the weather gets nicer and I can walk again.) I was also able to do the 30 second plank for the first time. I've been working towards this for some time but was only able to manage 7-12 seconds before dropping my knees. I look forward to getting better at it and maybe being able to get back to a push-up.

Work/family/play - Work has been quite busy since returning from holiday. We did phase one of our migration on Friday and it blew up in spectacular fashion. We had to reinstall all the printers on every computer on the nextwork. It was quite the experience.

Then Monday was just a very bad day. We had the printer issues first thing in the morning, then I found out my son was having some homework issues, then I got into an argument with my Grandma and had to walk out, then I found out the motor on our septic system burned out, and then we had water issues... Do you see where I'm going here? The day was Murphy at his worst.

Anyway, all is feeling better today anyway. I look foward to going to a two-day concert this weekend with the boys and my best friend. I think it will be a lot of fun and I will get to see Phil Vassar again. I think it will be my fourth or fifth time seeing him. He is my favorite singer without question. Then on Sunday we are having a birthday party for my Grandma's 75th. But SHHHHH it's a surprise party.

As you have probably seen, it was a rough few weeks because of the deaths of some people that mean a lot to me as well. Coleman earned his wings on the 5th and David completed his journey on the 7th (from 38Lemon). If you would like to see the video they played at Coleman's Celebration of Life, I encourage you to take a look at: http://www.youtube.com/watch?v=PnDx26D_JuA Have some tissues ready when you watch it.

Ok, I think that's enough for now. We'll see how things go in the next few weeks.

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