Wednesday, December 10, 2008

It's a Six Month Review

It has been 6 months now past my brain surgery. Part of me finds it very hard to believe it has been that long and another part of me say "is that all?" However, it's a milestone to me. :) I have not posted and updates for a while (I think November 26th was the last one) and all I can blame it on is being busy... sleeping. There hasn't been a whole lot to report either but figured this is a good time to get in a quick report.

  • Today is 6 months and 1 days since the resection of my brain tumor.
  • Today is 10 weeks since the completion of radiation.
Medically - My NeuroSurgeon hasn't bothered to contact me since my last MRI but I continue to take my knowledge of my tumor and the Radiation Oncologist's opinion on it to heart. My brain has had a lot of stuff done to in in 6 months and if the radiation worked, we hope to see a lot of dead cells still up there. (Which we did) Over the next few weeks I hope to get some more answers and may end up looking for a new NS depending on how the appointment with him on the 22nd goes. If all he does is what I suspect, he will not be my NS much longer because I refuse to drive 3.5 hours one-way just to be told what I already know. If he is unwilling to start scheduling phone consultations for future visits, he will no longer be my NS. I'm not a big fan of the person that schedules his stuff anyway. (The NS up there I liked had a wonderful Resident that handled his stuff and I really miss him because he was great.) Unfortunately, the NS I really liked isn't really taking cases anymore and is moving everyone around. Thus why I am now with the guy I have. Don't get me wrong, he did fabulous on my surgery but his "bedside manner" leaves a lot to be desired.

Emotionally - I've been having some very apparent issues with depression of late. I have had trouble with it in the past and it does raise a lot of questions now. My tumor is/was in an area that can affect moods and things like depression and anxiety. Therefore, it is quite likely this is an effect of surgery/radiation. However, things are getting a bit out of control. The most disabling thing is my temper. I fully believe this is radiation caused because I didn't have any of these issues after surgery. Basically, my temper gets shorter by the day. I know it's happening but it's beyond my control to stop it. My mood will go from cheerful to "growl" in 2.2 seconds and be set off by absolutely nothing. It trully makes no sense. My therapist had me do some tracking this week to see if there is a pattern. The only pattern I found was that it's almost constant. Over the weekend I was so bad I was feeling sorry for the boys. They couldn't do anything right. I have also found that when I try to control it, it eventually catches up to me and I completely lose it. I used to be one of those people that almost never lost their temper. It would take A LOT for me to be pushed to yelling and even more for me to actually lose control. I think only two people had ever seen me actually lose it. Now it takes very little. I try to control it as much as possible when I'm not at home but then I find myself extremely irritable at night and even to the point I lose control of other emotions. Anyone that knows me, knows this is NOT me. Now some people would say that this is all understandable given what I am going through... Yes, I agree but why all of a sudden and during an "in between" period. There's nothing going on that should be causing me problems.

Anyway, my therapist and I talked again today about it and I will be seeing another doctor on Tuesday to discuss meds to help "take the edge" off. I've never been one that is cool with meds but at this point I am willing to try it if it gives me back a little control.

Other than the temper and the issues with trying to control it, I'm hanging in quite well with the emotions. I do what I need to do, when I need to do it and I'm still stable with handling things. My intuition still tells me radiation was a mistake but it doesn't yet have grounds so I just have to brush it aside. It's not like we can do anything about it now anyway.

Mentally - As the weeks pass I continue to notice issues with my memory, focus, and concentration. It was very apparent when driving on ice the first time this winter. My focus is just not there. I found myself darting instead of focusing solely on the ice and road. It's nothing that can't be worked around but again it's something we have to watch closely. I find it harder to do just about everything. I have trouble sitting and typing out emails and blogs, doing things at work, even doing fun things that I enjoy. I've learned I have about 5-10 minutes in which I can fully focus and then it starts fading around the edges. I guess what I'm saying is if you are talking to me, say the important things in the first few minutes or the odds of it sticking are pretty slim. Also I guess this is an apology if you are talking to me and I wander off. The only thing I know to compare it to is Attention Deficit Disorder (ADD). Ahhh, the changes. :)

Physically - The energy level has leveled off at about 70% of where I used to be. It's been here for a few weeks now so there is a possibility this will be all I get back. I'm trying hard to learn at what level I can actually push myself. I seem to do well the early part of the week but by Wednesday I'm dragging. I have work next week but then I will be off for two full weeks for Christmas so I'm going to experiment a bit with my energy levels during that time. I've been wanting to push myself a bit more hoping that will help with my energy but I need time off after doing so. Therefore I think I will be concentrating hard on this over break when I can listen to my body after doing so.

I have had some headaches of late but I think it's just from the emotional things mentioned above. The jury is still out. It's not like I just had brain surgery six months ago or anything... LOL

I have a few areas of hair that are coming in quite nicely now. I'm happy about this because we're not even 3 months out yet. I think this may be a good sign that at least a good portion of my hair will return. There are still some very large spots completely bald (burn bald as I call it) that I fear may never return but if the rest of it goes like it is, I may be able to go hatless by the end of next year. We'll see.

I should mention that I am able to exert large amounts of energy when I need to but the next day I am almost comatose. I was able to dance again last Saturday and with a caller much faster than our home caller. It was great but I rarely got out of the recliner on Sunday. (This is what I am going to attempt to improve over break.) I know many have told me that I'm doing very well considering but I'm stubborn and I don't want very well. I want to get as close to myself as possible and I am frustrated that I am not getting there. I knew going into this that I would not be the same when it was all over but I guess looking at that in reality is another thing completely.

Work/Play/Family - The boys have had to put up with a lot of crap from me over the last few weeks. Between the loss of focus and the zero to *bleep* in 2.2 seconds, I'm not an easy person to live with right now. Several times John has had to tell me to go cool off. I'll be honest, if I were the boys this weekend, I would have slapped the crud out of me.

Other than this, they are doing well. My son is working on bringing a few low grades up and John is trying to get the house back in order after the fall. He's had to take on twice the work since my energy pretty much floors me at the end of each day.

I did enjoy dancing Saturday night. It always refreshes me. This is also one way I know that whatever is going on in my head is affecting me more. I was snippy more than once at dance and really snippy after we left. So for my fellow dancers, I apologize if I was snippy with any of you Saturday night. (This goes for anyone at work as well. If I am snippy I am soooooo sorry.)

This weekend we will be busy and it's a good thing next week is a short one for me. My son has soccer at noon and John's Christmas party is that night. I am sure Sunday will amount to staying in my recliner.

Next week I will only work four days and then I will be off until the 5th of January. Yay!!! I also have five hours of vacation to get in there so it should be a light week. Of course, At home I still have Christmas cards to make out, thank yous to write (that are now 6 months overdue... sorry everyone), Christmas shopping to finish, and don't even get me started on wrapping...

Oh, last thing. I want to update everyone on the friends I have mentioned over the past few months. First Coleman (5 years old brain cancer). Coleman is still not doing well. He has been having a lot of difficulties with some regrowth and his blood counts are really bad so they are having to skip his next round of chemo. He is also going through a lot because of being on the steroid to reduce swelling. He can barely walk right now. Second David (38 lemon) is also not doing well. He has been living with his mom for some time now and can barely communicate anymore. It is just a matter of time really. Lastly, the one person with some good news to share is Nyckie (friend in IL). First the bad news, they suspect her latest MRI is showing tumor regrowth. They will wait three months and try again. The fact they are waiting three months is a good sign. Now for the really good news. She found a job at the American Red Cross!!!! Congratulations Nyckie!!!! Please keep everyone in your thoughts and prayers this holiday season. I love you all!!!

Ok, I'm not sure I can ramble on and bore you much more.

I have appointments galore until the end of the year so if you can't get me over the holiday, I'm probably at a doctor.

16th - Psychiatrist
18th - Therapist
22nd - NeuroSurgeon in Chicago
23rd - General Practitioner
26th - Therapist
29th - Eye doctor

I might be adding a few before it is over as I need to see my Neurologist and possibly look for a new NS if the appointment doesn't go well on the 22nd.

There will be plenty of updates over break but, Merry Christmas everyone and Happy New Year!!!

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