Saturday, September 27, 2008

Let's Help Support Childhood Cancer

I know this is late going out and I apologize. Like so many important things I've needed to do over the past several weeks, this was put on the back burner due to my inability to focus or get motivated. For that, I apologize because this something that I feel strongly about and wish I could have done more.

Childhood Cancer is massively underfunded in the world of cancers. The month of September is Childhood Cancer Awareness month and if you see someone wearing a Golden ribbon, this is the reason. Many of my inspiration to fight comes from these young warriors who are fighting anything from brain cancer to leukemia. Some have lost their battle and won their angel wings, others continue the fight until that cure can be found. I am going to send a message to the moms of one of my favorite little warriors to get permission to share his story. I think you will be as touched by this little guy as I have been. Several times, when I have felt like I can't move on, I ask myself what Coleman would do and I think about his may prayers to "Gawd". He's truly a dear who has dealt with a cancerous brain tumor for almost half of his young life.

Sorry, I got sidetracked there. I hope some of you see this into this final weekend of September and think about this if you are heading out to a nice meal away. Chili's is donating a portion of all proceeds to St. Judes to help fight Childhood Cancer and on the 29th, they will donate all of their profit to it. Let's help this fight everyone.

I love you all.

Friday, September 26, 2008

The Week in Review 9-26-2008

Summary of this week: I can see the light at the end of the tunnel.

  • We're 15 weeks past the partial resection of my tumor.
  • 27 of 30 radiation treatments have been completed.
  • The official countdown to the end of radiation is at 3.
Medically - Radiation continues to take its toll on me but I'm maintaining as much energy as I can. It really brings me down by the middle of each and every day now. I am counting down the days and repeating the "Magic Number" to myself several times a day as a reminder that this is almost done.

I was able to come to terms with some things this week when I officially voiced my opinion that there will be no further treatment after radiation until a minimum of 6 months has passed. I need time to rediscover who I am, who I've become, and who I will be. I can not do this with treatments looming over my head. I do not feel that this time will take a huge toll on my overall treatment since we are still dealing with a tumor that has shown obvious progression. I've done what the doctors asked with radiation, against my better judgment and now I need to refocus myself and come up with a game plan on my terms.

Emotionally - This has probably been one of the tougher weeks I've had thus far. I've had to really fight with myself to keep myself straight in the emotional sense. I think the worst of it was due to being unable to see any end in sight to this constant struggle. While I know there is no end to it, I have built myself a break with the "no treatment for six months" idea and that helped me refocus and have something to aim for.

Mentally - Again, this runs along the same path as the emotions. I have struggled to mentally keep focused to continue radiation and focusing on the end has helped me through this. I can see the light at the end of this part of the journey and I've reminded myself several times that I am not a quitter... so... I'm ready to keep fighting and take time for me to refocus before continuing this journey.

I've struggled with the focus again this week but was able to work with it just as I had the previous week. I just find my mind wandering a lot more than normal but for all I know, this could be a permanent side effect of the radiation at this point. We'll see what happens. I guess I just understand what my boys deal with having ADD. I don't like it, I'll tell you that much.

Physically - I struggled a bit this week with radiation burn on my head. I've always been a bit of a pansy when it comes to burns (like sunburns) and on my head it seems 100 times worse. Just imagine getting a sunburn over 2/3rds of your head. It has affected my ability to sleep some this week but I keep rearranging pillows so I can get as much as possible. The cream the gave me for it also helps a lot but putting it on is another matter completely.

Fatigue has definitely grown this week. It's a good thing it's about over or I'm not sure I'd still be doing my part time days. I have been sleeping an average of 12 hours a night and still feel I could use a few more hours each day. We'll see if I can do some good catchup over the weekend. I just have to keep reminding myself that next Wednesday will be it and then I can start the recovery process.

Family/Play - My son's soccer season started last week. He really enjoys soccer and I like watching him play. Originally, he was on the same team as a fellow soccer mom that I became friends with but then he was moved around. Now he is on the 4H clover bud leader's husband's team. It's pretty cool even if he doesn't like all the running he has to do. It's good for him. :)

Anyway, If I get a chance, I'll post some more photos soon. Unfortunately, I don't see John much right now since harvest has begun and he is already working major long hours. If I can catch him long enough to take a few shots, I'll post them. Enjoy the fall everyone.

Wednesday, September 17, 2008

The Week in Review 9-17-2008

Summary of this week... The true meaning of exhaustion, the slow loss of focus, and I hope my shower drain continues to survive better than my washer did last week...

  • We're 14 weeks past the partial resection of my tumor.
  • 19 of 30 radiation treatments have been completed. The countdown has officially begun and now stands at 11. :)
Medically - Radiation is now at week four and the side effects are truly beginning to show their ugly head. The level of exhaustion is getting deeper and starting much earlier in the week now. Where I wasn't feeling a high level until Thursday, I am now feeling it as early as Tuesday. Mondays have taken on a whole new meaning to me as they are the only day that I truly feel great.

I continue to work part time but that is becoming more difficult by the day to do. By the later part of the week, it is all I can do to keep my strength up long enough to get through each day. My Short Term Disability was approved to continue my 4 hour days through October 19th but my request for information on finding something between that level and Full Time Disability has not been answered. Beyond that, the delay in getting my disability approved this last time, caused my paycheck to be incorrect. Luckily, John and I have enough put back that this delay doesn't hurt us but it is one more headache I've got to deal with when I really don't have the energy to do so.

Emotionally - I'm doing ok emotionally. I've given up on fighting myself about whether or not radiation was the right move. It was just not worth it any more to fight my intuition so I simply told my intuition that it is right but now it's too late so shut the heck up. :) Yes, sometimes I have to have these arguments... conversations with myself. So far it has worked so I'm not going to complain too much. The thing I have to remember is that only one entity knows if radiation was a good or bad move. He hasn't acted in either direction so I just have to give up my trust to him and hope that he wasn't talking to me through my intuition. We do what we have to, right?

I have struggled emotionally for a friend the past few weeks. A good friend of mine, whom I met through an online support group, is facing some very difficult times right now. Not only is she facing a possible regrowth of her brain tumor, but she began having seizures and then lost her job. If you can find it all in your heart to keep Nyckie in your prayers for the guidance of God as she and her family gets through this hard time... I would appreciate it. Nyckie... if you are reading this, I love you girl and I'm thinking about you constantly.

Mentally - I'm back into a rhythm at work so I am able/forced to exercise my brain more. I have also found the love of reading again. I just finished reading the "Twilight" series by Stephenie Meyer. It has really taken my interest and I know that makes John feel better because one of the things I have noticed since surgery is the lack of interest in some of the things I used to like. Such as playing Puzzle Pirates or the Sims. Not that it's a bad thing to not be infatuated with them but it scared him a little so he's glad to see me "in" to something. I also pulled out some of my "brain games" last week and that felt good. I'll admit that being away from them has been a bad thing for my scores are really low in comparison but at least I did them again.

I have been noticing since about Friday that my focus is beginning to slip a little bit again. Just little things I notice that just don't feel right. I'm sure it's caused from changes going on in my brain but if they get too much worse, I'm going to pull myself out from behind the wheel for the safety of others. For now I'm doing ok with behind the wheel as long as I have something to concentrate on at the same time as driving. (Singing with the radio, thinking up blog entries, etc...) We'll see how the last two weeks go.

This lack of focus is also why I haven't been updating my blog the way I've wanted. On my way home I'll come up with complete posts but by the time I get home I've completely lost my focus on it. *sigh* I hate that.

(This is my hair prior to it deciding to come out. As you can see, it had grown back in very nicely.)

Physically - Either I've gotten used to the swelling or it has been going down some. It doesn't bother me near as much as it had but I seem to be plateaued at a weight I'm really not happy with. I'm sure part of that is from the steroids and the weight you typically gain from it. Part of it is probably the limit on exertion I have due to exhaustion. Either way, as soon as I am feeling better from radiation, I'm going to get back into walking and maybe lifting weights within my limitations. I'd love to be lifting weights to the point that I can be carrying computers around by the end of the year. It may happen but I will build up to it very slow and cautiously. (This is what was left before I had John shave it for me. It looks much balder now but I haven't snapped a shot of it yet.)

I've dealt with A LOT of hair loss in the past few weeks. The hair loss doesn't really bother me as much as I thought it would other than it is all over the place and it is coming out in ugly patches rather than a whole area. This caused John and I to shave part of my hair so that it would be easier to put the cream they gave me on the the radiation burn that is showing its ugly head. Pretty much the entire right front side is gone and the left side is thinning out a lot. I haven't cut that left side yet but if it keeps going it's likely all to fall out anyway. We'll see how bad it looks when this is all said and done. Luckily, things have gone in such a way I can wear a wide headband and other than the severe lack of hair on the right side of the band, you don't even realize it's not my natural style. :) The worst of it is that I can't even sleep without waking up to a fur pillow and my poor shower pipes. I'm hoping they survive this. I've got a drain guard but I'm not sure it's catching all of it. *sigh* Anyone know any cheap plumbers? LOL

Exhaustion... you don't know the true meaning of the word until you can sleep 16 of 24 hours and still feel like you need more. This isn't the kind of exhaustion that is caused from sleeping too much. This is the kind that your body doesn't want to move without using a fork lift. By Tuesday I get the "I didn't sleep well last night" tired but come Thursday it's "But 12 hours isn't enough sleep for any normal human" exhaustion. Needless to say, most of my weekend is spent sleeping. The bad part of this is that Monday is a decent feeling day and I have a hard time falling asleep until a bit later. (Although I still get 10-12 hours of sleep that night.) Then Thursday rolls around and I can take a nap and still get 10-12 hours of sleep that night and wake up like I hadn't slept at all. This is one part of radiation that I won't miss.

Well, that's about all for now. There's more I could write but if I want to get this out, I'd better do this now. *Huggles*

Friday, September 5, 2008

Behind the Rays of Radiation

I have received numerous questions about radiation and what exactly it is so I am going to try my best to give information on it. I am not a doctor and I apologize if I get something wrong in my explanation but this is my understanding of it.

Radiation uses ionized radiation to attempt to halt progress in malignant tumor cells. Radiation is measured in either RADS or Grays. A Gray is 100 RADS. You may have seen me refer to the brain being able to safely have 6000 RADS or 60 gray administered to it. (You can read more about it here.) The particular type I am getting is also fractionated. This means I will receive the 60 gray over 30 treatments of smaller doses.

With the type I am receiving, the first step is to create a mask so that you are always in the exact same position. This helps ensure accuracy and make sure that there is as little damage to surrounding good tissue as possible. The mask is make of a hard mesh type material with holes so you can breathe out of it. The mask is bolted to the table during each session so you can't move.

This mask is custom fitted for each patient and is very tight upon their face. (Mine is close enough that if I open and close my eyes, my eyelashes get stuck in the holes.) During the mask creation, they take this material and heat it. It stretches over your face and they attach it to the table. As it cools, it hardens. After this is done they take scans so that they can get the treatment exact.

All the above occurs the first time you go in. After that the treatment takes about five minutes to do but it is done every day Monday thru Friday.

The radiation itself is pretty anti-climatic. You lay down on a table similar to a CT-Scan and they snap your mask into place. The machine adjusts itself where it needs to be and makes some noises as the radiation itself is administered. They say the actual radiation takes just a few seconds and the rest of it is the machine getting into position. The arm will move in and out or around in order to get into position. For my treatments, it moves to my right side about one and a half arm lengths out, administers a dose, then moves above me about half an arm length out and administers another, then moves to the left about an arms length out and does the final one. That's it. When that is finished, they unsnap me and I can go home.

The possible side-effects when dealing with the brain can be quite significant but we just have to hope that the good brain cells repair themselves adequately. I've already experienced the hair loss (I'm hoping I'm in the temporary category and not the permanent) in the area the treatment is administered. Other symptoms include redness similar to a sun burn, swelling of the brain that causes nausea and headache, and fatigue (again something I'm experiencing). Other late appearing side effects could be cognitive difficulties, radiation tumors, or complications from necrosis (Dying of the tumor and brain cells).

The Week in Review 9-5-2008

Summary of this week... I hope my shower drain survives radiation.

* We're 12 weeks past the partial resection of my brain tumor.
* 11 of 30 radiation treatments have been completed. (There was no treatment on Labor Day.)

Medically - Radiation continues out of week three (ok 2 1/2) with no major complications. The biggest issue I am currently dealing with is whether or not my Short Term Disability will be extended or not. I am currently working 4 hour days and I'm not sure I'm capable of handling a full 8 hour day so I am hoping they work with me and extend it through the end of radiation.

Emotionally - This has been a slightly better week emotionally. I'm still not convinced that radiation was the best course and if anything, I'm the opposite of convinced but at this point I'm committed so there's not much I can do. (If I back out now it would probably cause more damage than its worth.) My reason for the change in feeling is going back to what my heart has been telling me from the beginning. Even though it is malignant, it is slow growing. Because radiation feeds on the reproduction of cancer cells, it is more effective on quickly growing tumors. Therefore, I continue to feel that I should have waited longer to play this card... at least until we saw marked growth.

Mentally - I'm back into a rhythm at work so I am able/forced to exercise my brain more. I have also found the love of reading again. I'm currently absorbed/infatuated with the "Twilight" series by Stephenie Meyer. It has really taken my interest and I know that makes John feel better because one of the things I have noticed since surgery is the lack of interest in some of the things I used to like. Such as playing Puzzle Pirates or the Sims. Not that it's a bad thing to not be infatuated with them but it scared him a little so he's glad to see me "in" to something.

Physically - Fluid continues to be a problem and there's not much they are willing to do about it. The solution was to take two Aleve a day. I hate Aleve. It's supposed to be good for all kinds of things but it has never made a dent for me in anything. (Although I was down 3 more pounds this morning so maybe it's starting to go away... again.)

The most noticeable issue this week is hair loss. I'm starting to get some nice balding areas particularly around my scar area. When I take a shower, there is noticeable hair that ends up staying with my hands as well. It's cool... I just wish it'd go ahead and fall out what it will so I can see what kind of mess I'll be left with. :)

Family - Again, I really don't have much to report here.

Ok, so this was a short update. Let's hope for clear shower drains, Short Term Disability approval, and lots of restful sleep.

Thursday, September 4, 2008

I'm Worried About Clogged Drains

ke I know, I don't update this thing near as much as I should. I'm blaming it on being tired and reading a book. It's more important to get sleep and read the last of this series I've found than it is to bother with the internet. (Hey I have to keep my brain sharp and then let it rest!!!)

Anyway, over the past few days, we've noticed quite a few bald spots showing up again along my scar line as well as some hair showing up when I take a light comb to the area that has been growing so well since being shaved. That is just back story. Last night I was taking a shower and rinsing the shampoo out of my hair. When I pulled my hand away, I had a TON of hair wrapped around it. It was longer hair too but I'm not sure if it came from the back side of the scar line or the left side. I'm not too worried about it other than my poor drains might take a hit in this whole escapade.

See, I'm not exactly sure how much of my hair I'm going to end up losing. It could be the whole front or it might just be patches. I'm also not sure how far back I'll lose. Basically, I don't want to shave more than I have to so I just have to wait and let nature/radiation take its course. If this were chemo and I knew I'd lose it all, this is the point I'd shave my head but it's not so it makes it a bit harder.

In the meantime, I will have to start brushing my hair real good before getting into the shower to take care of any loose ones then make sure the drain cover is on so that as little as possible goes down there. I will probably have to buy a few extra bottles of drano to be safe. We have to use it about every three months anyway because of my hair so we'll just have to do it more often.

Well, that's about it. Please everyone keep my drains in your thoughts. I don't want that mess on top of everything else. (Yes, it seems like a funny thing to ask for but that would be a nightmare I'm not ready to deal with right now.) *Huggles*