Wednesday, November 17, 2010

Post Surgery Three Week Update

Ok, so it's a day late. Had a couple of rough mind days so...

  • I am 2 years and 5 months past the partial resection of my grade three brain tumor (Hereby known as surgery one).
  • It has been almost 2 years since I completed external beam radiation.
  • I have been seizure free for 17 months.
  • It has been 3 years since I was hit in the face with a baseball that led to the early discovery of my brain tumor approximately a month later.
  • It has been 3 weeks since the subtotal resection of my grade three brain tumor, scar tissue, and necrosis (Hereby known as surgery two).
Medically - After spending 7 weeks fighting what was believed to be a severe sinus infection, I had surgery to remove what is believed to be a sub to total resection of my tumor. The results appeared to be a near equal amount of scar tissue, necrosis (dead cells from radiation), and active tumor. While it's not been determined if the tumor cells are left over from my first surgery and radiation or if it's tumor regrowth, the next step for me is the same. I will be seeing a local oncologist on the 30th to discuss the beginning of a chemotherapy treatment called Temodar. Temodar is a very effective from of Chemo for brain cancer. It is the next step in my treatment and is part of a standard protocol type. This is essentially step three in the typical protocol. There are still many options available although not as effective as Temodar. The current plan will be to do a 28 day cycle for 6 months and then decide what to do from there. This 28 day cycle will run as such. Take the oral based chemo for 5 days and then off for 23. Not sure of the dosage yet but the Neuro Oncologist at Mayo has recommended 150 mg for the first month then 200 mg after that depending on how I tolerate it. While I still don't have all the details of it, I'm guessing I'll begin it the first week of December. That will get me at least one round under my belt before my short term disability is due to expire. (Although I'm hoping I can get them to extend it until after my second round.)

Temodar is usually fairly well tolerated but everyone is different. I should be able to live fairly normally other than the 5 days of taking it and perhaps a few days after. I will have to be careful to avoid being exposed to infections so I may get a little paranoid at times but overall I'm thinking this is a good step and my quality of life will not be severely effected. (Not as much as on the steroids anyway).

Emotionally - Despite a crazy few months, I am holding up pretty well emotionally. I am approaching everything with my positive attitude that I always try to keep. It is just so much easier to be positive than to think negatively. I've been keeping myself busy at home and that helps keep me focused on healing, getting better, and eventually getting back to where I was before I came down sick again.

Mentally - I am about ten times more mentally stable and competent at this stage of my recovery than I was at this stage of my first surgery. Truthfully, I'm probably more mentally stable at 3 weeks this time than I was at 3 months last time. I fully believe that the steroids are the different. Last time I was still on heavy steroids at this point and this time I'm almost off of them. (I know it seems like I blame a lot on steroids but they truly are the problem.) I think this surgery would have been a breeze if I hadn't been on the steroids to begin with. Oh well. At least I'm that much ahead already. The only real mental struggle I have is motivation and stamina. I have to literally force myself to do things but I guess that's not so unexpected given everything I've been through. As for stamina... that's mostly caused from not sleeping as I should. I tend to lay down for 10 hours or so but get up at least once for my Tylenol and several times for bathroom breaks and sometimes one or two times to get a snack since I've hit the major snack binges very early in the AM. Therefore, while I am down for a reasonable amount of time I'm up a lot in the night so my sleep isn't great. I'm sure this is part of my physical and mental stamina issues.

Interestingly enough my mental competency is pretty good thus far. I can play my "brain games" and I'm actually doing fairly close to what I was before my surgery. If I can work on processing quicker, I think I would be right on the same track I was before surgery.

Physically - Other than fluctuating 5-20 pounds a day in weight thanks to the water weight from the steroids, can't wear most of my pants because my waist looks 8 months pregnant, and continue to cough especially later in the day... I'm doing fairly well. My knees are weak from the toll the steroids have put on my joints but they are holding up very well compared to what they have in the past. I have regained the strength to climb steps and I can actually get on the floor and get up but have to use more arm strength to get up than leg (Not the way it should be).

I am able to do a lot of the things I couldn't early on. I can actually get things off the floor or lower shelves without feeling dizzy, don't have to wait as long to get my bearings when I go to get out of a chair or bed, and can pretty much do what I want as long as I'm careful about it. My stamina is still very weak but as I said mentally a lot of that is the difficulty I'm having in getting decent sleep.

I am feeling good and ready to take the next step in my recovery which is slowly integrating a light workout into my daily activities. This will increase my stamina, help me get my strength back, and start me towards getting back to where I want to be. I'm not going to set a crazy goal or anything like that but I am anxious to be able to wear my pants again. Most people know that the word "diet" is a dirty word to me so no that won't be in the goal but rather doing it the natural way by getting my exercise again, getting out of "fast meals" that we've been in the bad habit of lately, and just generally focusing on my health again.

I haven't even tried to experiment with my head/hair yet. I have some pretty significant swelling on the right side of my head where the fluid hasn't fully reabsorbed yet. I honestly think I look like some strange half a Klingon or something like that. I have this big swollen area that sticks out making the side of my head bulge. As for hair, he honestly didn't shave a hole lot at all. As soon as the rest of the dry blood falls off, I can probably do my hair like I did before surgery and no one would be the wiser. The scar has healed great with only a few new "landmarks" that no one but me will probably ever see. Not that hair and scars mean anything to me anymore but... Yes, I've dug out all my hats. Not looking forward to the winter although my head is not reacting to the cold like it did after the first surgery so hopefully it won't be as bad as I thought it would.

Family/Home - John is busy with work and having to shoulder a bit more around the house in my recovery. He's working all the hours he can to try to make up for the 6 days he had to go with no pay while we were up in Minnesota. It's not helping that our son is taking a reversal and not wanting to even do what he is supposed to. Not sure whether he's just stressed out or what but he has really not been helping matters around here much. Hopefully, it's just a phase and he straightens up soon. *Sigh*

On another note, we got the refinance loan on our house. We will actually close next week. It will be a really good deal for us since it will now be a fixed loan, we'll knock 7 years off of our loan, and get cash back to replace our kitchen floor and some other home improvement things that need to be done (Some are true necessity or there will end up be structural issues arise).

Well, I guess that's the update for now. I'll try to do another update after I talk to the oncologist.


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