I'm going to try a little bit of a difference in format so that it will be easier to track where I really am in the battle against my brain cancer.
- We're 10 weeks and 4 days past the partial resection of my brain tumor
- 3 of 30 radiation treatments have been completed
I've had several people ask me about radiation and details on it. I haven't had an opportunity to do the research I need in order to truly explain it and verify what I know to make sure it is accurate. I have promised pictures as well so I'll have to do a search on that. (I might ask them about bringing my camera but I'm not sure it will be allowed)
I have received some very good information on the plan of attack for my radiation treatment. I'm on "low" doses of the radiation but they feel with my tumor this attack is the way to go. Furthermore, they were able to successfully implement a plan to avoid damage to my optic nerve. Basically, the optic nerve can handle 5400 rads of radiation and mine will get less than 2500 rads and all of that is in "scatter". This number is less than half of the amount it can handle so if I should ever have to return for radiation treatment in another area of the brain where it would also receive "scatter" it should technically be safe. Hopefully it never comes to that but it's something good to tuck away into the back of my brain. (No pun intended)
Emotionally - This has been a tough week emotionally and most of it goes back to the fact I still haven't convinced myself this is the right plan for me. Rather than rehashing this phenomenon, here is a link to my blog post on it. Essentially I did finally get enough questions answered that I at least don't feel that I am doing myself serious harm now... just have to fight my intuition that it's the wrong choice. Unfortunately, my intuition is usually right but I have to tell myself that it is wrong this time. I'm just putting my trust in God that he will send me an obvious sign if I am to back out of this thing before it is complete. I haven't received anything of the like yet, although something that happened recently made me wonder if it was a sign to back off of it or to keep moving forward. At this point I'm continuing with the plan outlined by the doctors.
I guess this is as good of location as any to put the "possible sign". Since right near the beginning of my brain tumor diagnosis, I have followed the story of David. (The link is on my blog 38lemon) He's a researcher to the point that I look like someone that doesn't know the meaning of the word. He's also much further along in the journey than I am. His site has been a huge source of information for me and also is occasionally a reminder that this fight will go on for some time. Earlier in the year, his tumor made the all to familiar transformation to a Grade Four GBM (Same as Senator Kennedy). He immediately did radiation (he did not have radiation for his transforming grade three tumor) and then started on IV chemo. (He had done Temodar which is standard chemo for brain tumors for two years prior to this.) His tumor had originated in his temporal lobe but when the GBM was discovered it had not only returned in the temporal but had also moved to the frontal lobe. I hope this isn't all more confusing that it is worth but I think it's information that has been important to me because it's always been that dose of reality I need to remember in that this battle will never fully be finished. Anyway, a few days ago, despite the IV based chemo, it was discovered that another tumor has developed in his Corpus Callosum. This was very tough news for me to hear but at the same time in makes me feel better about my decision to not pursue chemo at this stage. (It's odds of doing me any positive are low and not worth the side effects in my opinion.) Anyway, this was a blow to me this week on top of trying to make the decision that I would indeed do radiation. Emotionally, this has been one of the toughest weeks for me since my diagnosis one year ago.
Mentally - Well, the internal battle I've had all week really was the brunt of my mental state. At this point though, I have opted to move on and focus at the task ahead instead of trying to worry about what my intuition is telling me. It's the world of the unknown roller coaster and you just have to ride it out. (Yes, this is the first roller coaster that I would rather get off of *smile*)
I fully expected other mental issues this week since it has been one year since our lives changed, but really it hasn't been too bad. I had a few moments of "I wish I could turn the clock back a few years" but really that was the extent of it. I guess turning the clock back doesn't really do much good because this thing would have eventually shown itself one way or the other. I guess in the long run, it's better that it was discovered this way now instead of with something more serious later.
I continue to struggle with the motivation issue. I really wish I could figure out if it's just residual from surgery, a permanent side effect of the surgery, or stress. If it's just stress, I can work with that. If it's either of the other two things... well, it might be a long hard road still.
I'm also seeing more and more decline in my short term memory. My therapist and I ran through a test of short term memory and it is showing I'm still on par with my pre-surgery tests but it sure seems worse than it was. Maybe the short term issues are from stress and I was feeling the same stress when we took the tests. I don't really know at this stage. I guess we'll find out soon enough. (I know, my short term memory will just continue to decline as I age... but I'd rather it wait until I age!!! LOL) What I do know is that if I don't write something down within about two minutes... it is lost forever.
Physically - I am happy to say that I am much stronger feeling physically now. You can make out my cheek bones again and I can wear one pair of the two pairs of pants I couldn't get into when I started back to work. This means that a lot of the steroid swelling has gone down. I did have to refrain from wearing one of my rings on Friday because it was just too darn tight on my finger but that was just a one day thing. Who knows why it came out of the blue.
I have not yet had any effects from the radiation and I don't really expect any for another couple of weeks. They say they typically start about 2-4 weeks after starting it. I hear it is usually precursored with the loss of hair in the area so you have a bit of warning. :)
When I first agreed to radiation, I guess I was a bit misled that I would only lose the hair that was shaved prior to surgery. It is now my understanding I am probably going to lose the whole front portion (or at least huge patches) of my hair. Don't read this wrong, this is not a problem, it just means I have more tough decisions to make in the coming weeks. I will wait until it actually happens but I think I will prefer to make sure that area grows back (if it does at all) evenly rather than in several lengths like I am dealing with now. I also guess I need to get my bandannas back out and do some more practicing.
I don't think there are any other notes to make about my physical wellbeing right now. I'm sure there's things I'm missing but refer back to my note on short term memory above.
Family - Things have been quite rough emotionally for John the past few weeks. I think he's struggling because he is trying to "stay strong for me" but is neglecting his own feelings in the process. I know he is under a lot of stress and it is understandable. Everything is much harder on him than it is for me. I don't have to watch what is going on... he does. Together we will get through this and we both know it. Sometimes we just sometimes forget that.
My son doesn't fully understand what is going on but understands enough to know he is a little worried. I don't think he knows why he is worried, he just is. Good or bad, school started for him this week as well. So far things are going well and he's determined to turn over a new leaf when it comes to his school work. I hope he keeps this attitude.
Well, that's about it for now. Believe it or not, I'm ready to try a nap but I'm going to try some dishes before I do. I am hoping by "rewarding myself" with a nap I might be able to get enough motivation to do the dishes that are quickly piling up.