Sunday, August 31, 2008

The Week In review 8-31-2008

Summary of this week... so much to do and so little energy to do it. :)

  • We're 11 weeks past the partial resection of my brain tumor. (Almost 12 weeks but not quite)
  • 8 of 30 radiation treatments have been completed.
Medically - Radiation continues and so far has been without any major hitches. I have been dealing with some minor side effects but nothing overly concerning of yet. I explain these in the Physical section rather than medically. Beyond this, everything is quite in the strictly medical front.

Luckily I have a doctor that is actually listening to me when I tell him chemo is not currently an option. The odds of the chemo working for my particular tumor is very slim and I can not see going through the side effects of it for something that has such low chances of doing anything. Especially since no one has yet been able to give me any tangible proof that this thing even wants to grow.

Emotionally - Unfortunately, I still haven't convinced myself that radiation is the correct path. I may never at this point and I accept this. I have to question if one of the many "new technologies" out there would be the better path for me right now. I just have to remember is that you have to believe what you choose is the right path regardless of what happens. I've gone with it so I have to trick myself into believing this is the way to go.

Beyond that, I've been pretty stable emotionally. It sometimes scares me that I have not been more emotional about this thing but honestly, I haven't found a need. It's my boys that I am worried about, not myself. There are many, many things worse than what this thing may do to me. For now, I just focus ahead and keep fighting. That's all you can really do. Don't let the cancer rule your life but you rule the cancer.

Mentally - The effects of treatment are continuing to take their toll on my motivation and it is really starting to show. Even if I set very small goals for myself and refuse to focus on anything but, I am unable to accomplish the simplest things. It's not that I can not do it, it's that I don't have the focus or motivation to do so. Even the things that used to motivate me in the past, have no effect. Truth is, I have less motivation now than I did on the steroids and that's pretty bad. I'm not sure if it's the radiation causing it or just the compound effects of everything that has happened this summer. I'm sure, even though it was necessary for my very mental well-being, work hasn't been helping because I spend my few "really energetic" hours there instead of at home. Oh well, I'm glad to be back there.

My short term memory seems to continue to get worse. I can honestly be discussing something with my co-worker, step outside to my cubicle to write it down and totally forget what we talked about. That's pretty bad in my eyes. I know I can't do "mental lists" any more even for the simplest of lists. I'm hoping once radiation is complete and I've had some time to recover from it, that I can regain at least half the ground I've lost. I'm hoping...

Physically - For as much progress as I made last week on getting rid of the fluid I'm retaining, I went backwards this week. From last Saturday morning until las Sunday morning, I gained 10 pounds. That's 10 pounds in 24 hours. This kept like this through Tuesday at which time I lost 7 pounds over 24 hours. Unfortunately, when this weight gain came, I started feeling very nauseous. This is also a side effect of radiation indicating swelling in the brain. We were not sure if it was from the extra weight around my mid section or swelling. It didn't really matter because I really don't want to go back on the steroid (the solution for the swelling) so I agreed we should wait a while and see what happens. I'm glad I did because when the water went down... so did the nausea.

Unfortunately, with the weight gain the cough, I've had since I went off the steroid, also got worse. I think some of my co-workers thought I was trying to choke to death last week. Again, when things got a bit better with the water retention, the cough eased up some. Tuesday when I see my Radiation Oncologist, I'm going to try AGAIN to see if I can get a diuretic. I've tried from three doctors now and haven't had any luck. This stuff is just getting worse and if it's masking/causing side effects, I think it should be taken care of as much as possible. It can't be good to be dealing with this alongside the radiation. One on its own is bad enough.

The last thing I was dealing with this week is headache. Again, I'm not sure if this is from the radiation or the coughing from the swelling. Again, this is a symptom of brain swelling but I also get headache when I get bronchitis and am coughing all day every day. The head can only handle so much of that before it gets annoyed and my brain is a little more sensitive right now. In the past, after about two days of coughing, the headache would come in as well. I've had this cough for over 7 weeks now and it's gotten worse so again, the swelling could be masking things. However, since I'm trying to avoid going back on the steroid, we'll blame it on the cough for now.
I have already told John that if it does come to the point that I HAVE to go back on the steroid, I will only do so if a prescription for a diuretic is given at the same time for use after I go off the steroid. If the prescription isn't given, then radiation stops so that the swelling in my head will go down on its own. Yes, I can be a real tart but this is stupid.

Beyond the obvious physical ailments the only real issue I've had is problems sleeping. It comes and goes but it seems like I can't get comfortable at night. Part of it may be that my right side of my head is super sensitive, other may just be that I'm restless. Not sure and will probably give it another week since I did sleep really well this weekend. (I've had 24 hours of sleep in two days)

Family - It's really quite hard to speak for them since neither one of them are very good about speaking what is on their mind. (This has been the source of several fights between John and I since I was diagnosed.) I feel it's important for them to talk about it but they (John) are afraid of bringing me down if they voice their fears. I've told him and many others that they don't have to worry about me. I have plenty of places to voice my fears and the more I voice them, the more confident I feel. I am strong enough to handle myself, it's everyone else I don't have the strength for. If they talk and I know where they stand, I don't have to worry about them. If I think they are holding it all in and I can see that it is bothering them, then I worry and that I DON'T have the strength for. *sigh*

Play - This was a pretty interesting week in the play department and it hasn't ended since we have a long weekend. On my online Harry Potter group, we had some "battles" take place and things got real crazy. Being my typical self, I tried my best to mediate. Not sure I was really getting through but it made me realize that I do indeed still have the touch I used to. Sometimes I notice myself reacting differently to certain situations. This has bothered me but then I realize that it could be a number of things causing it... stress, surgery, radiation, the tumor itself, lack of sleep, etc. Therefore, when I do react how I know I would have in the past, it gives me confidence that it is probably just temporary.

Yesterday we hung around the house most of the day other than a few minutes when we ran to town for some shopping. Today we are hoping to go to a square dance to visit my friends. It's been several weeks since we last did this and I'm anxious to get back there. If I can get the right square together, I might even try to dance a single tip. We'll see if the right people are there and are willing to attempt it. (I have to have a square with all experienced and tall guys. I figure the tall guys are least likely to accidentally bump me in the head and it will take an experienced square since it has been more than three months since we've danced.)

Then Monday we are hoping to go to our former hometown's labor day celebration. We'll see if we go or not. Just depends on our motivation come Monday. :)

Well, see you all soon.


No comments:

Post a Comment