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.

*huggles*

The Week In Review 8-23-2008

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

Medically - Well, this is the end of "week one" of radiation. It started mid week so even though it is week one, it wasn't a full five days. This is ok with me because it will give me a few days to "recover" before John and I's anniversary. This way radiation is scheduled to complete on Wednesday, October 1 (we lose one day due to labor day) and John and I's anniversary is on October 5. I think we will be celebrating more than 12 years this year. :)

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.

*Huggles*

The Art of Convincing Myself

This particular post might change some people's minds about how things are going with me... but that is not its intention. I just want to express my feelings and this is how I am feeling right now.

I wish I could sit here and tell you that I feel that radiation is the logical and best next path for me. Unfortunately, I can not do this. Yes, I am doing it and I will continue the therapy but I can not honestly say that I feel it is the right path for me at this time. I believe I need to just trust the doctors and 100% of everyone else but in my heart I am not yet convinced. Will I ever be convinced? I wish I could answer that right now. So why am I doing it if I am not convinced it is the right path? For once, I just have to trust the doctors. Do I trust the doctors? I trust very few in the medical field. Is it important that I eventually convince myself this is the right path? Yes, it is very important for my mental health. Why? If radiation doesn't work or the side effects get severe, I will always question why I didn't follow my instincts. It's not like you can undo it once it begins.

So why am I not convinced? I really wish I could answer this. I'm typically a very logical person and this is good and bad sometimes. It's good because I weigh out all the options. It's bad because sometimes I pick up on things and ask questions that have no answer. I believe this is where the current problem lies. I have questions that just can not be answered and because of this, I can not convince myself that this is the right choice. This is just one of the many things I feel are working against me in convincing myself of this being the right path. Others include the fact I am still not having any symptoms, this tumor has not showed change in the past year, I have not received "my" sign that this is the right path (I have every other time prior), I had less time to contemplate this decision, and I'm not sure the benefits can truly outweigh the side effects.

So you see, I'm in a very confused mental state right now and this will probably be even more affected by the fact that I will probably never get myself convinced of this choice. Unfortunately, if I come to the conclusion that this definitely isn't the right choice... it's a bit too late.

One Down Twenty-Nine To Go

Radiation treatment number one has now finished. For the most part, it went just as I expected and there were no apparent problems. Now we'll see how the next 29 go.

The Optic Nerve will be spared and should only receive half of the radiation it can safely handle. This is good news.

So far, there have been no apparent side effects other than a slight taste of metal in my mouth. This is a common phenomenon apparently and it's just more annoying than anything.

As for the unexpected part of the treatment, instead of just receiving radiation from the front and right of the tumor, I am receiving it from both sides and the front. Not a big deal other than this means when the "sunburn" side effect takes place, it will be a much bigger area and thus more of a headache. I was dreading that side effect as it is so now I am seriously dreading it. UGH

Anyway, that's my update.

Just Some Monday Morning Musings

Wow, it really has been 12 days since I last updated. I am so sorry. I have good reasons though. Last week I started back to work and I was absolutely beat when I got home each night. I am hoping I'll be able to increase my stamina just a bit as this week wears on so hopefully that will mean more updates this week.

Anyway, as I said, I did start back to work last Monday. After much twisting of arms, I was able to get approved for restricted return of only four hours a day. It's working out pretty good for the most part. I am able to get through my day and get home without too many problems. I have the option of dropping by my Grandma's house and taking a nap if I really need to but I only needed to take advantage of that last Monday. Otherwise, things have run smoothly.

On to the big issue... I start radiation with a simulation on Wednesday at 2 PM. I am told this appointment can take up to 1.5 hours. Basically, they do lots of scans and things with a "simulation" machine to make sure they have things laid out where they need to. I'll admit, for the first time since surgery, I am a bit nervous. I'm still not confident I've made the right decision on radiation so that is weighing heavy on my mind and my nerves. I guess I just don't trust doctors very much and I question whether he will really tell me what the odds to damage on my optical nerve are. I know that legally they have to, but that doesn't make me feel any more confident. Doctors have a way of wanting to stick with protocol regardless of whether that is the best path for the patient or not. We live in a "quantity of life" society and I'm not in that mindset. The only thing that matters to me is quality of life. I am worried that the "side effects" of radiation may impact my quality of life. I would not be happy if that were the case. Again, this comes through because I HAVE NO DEFICITS. If I had any deficits, it'd be much easier to accept. Are you beginning to see a pattern here? Me too. However, I have to believe this is the way that God wants it to be or he would have revealed a deficit to me at this point. He's testing my resolve. :) Well, I'm up to the challenge and I know I will get through this... even if the path ends up being a little rougher than I want.

In other review, as already mentioned, mentally I'm struggling a bit with the decision to do radiation. I know I just have to believe it is the right thing to do but that is hard when you don't really believe that. However, I have to focus on why I agreed now is the time in the first place. I decided that I would rather "recover" once instead of twice. You see, I'm recovering well from surgery but I have a long ways yet to go. By doing radiation now, I will be brought down from fatigue and the like now so that I can recover from both things simultaneously. If I wait until we see change in the tumor or I develop deficits (which is my preferred method) I would be allowing myself to get back to 100% only to turn around and be knocked down again. That's a hard journey to have to start over. Therefore, I've decided I would rather do it all once than to work my tail off to get back to 100% and be knocked back down. *sigh* I'm sure it's the wrong reason to do this and it may come back to haunt me but for now it's the path. We'll see where it leads from here.

It felt good last week to return to work. I honestly feel that physically I am at about 90% of what I was previously. Stamina is the role in the remaining 10% and I realize that I may never get back to what I feel is 100%. However, that won't keep me from trying. One of the reasons I knew I needed to return to work was that mentally I am more in the 70's of percent. I can't recover that part of me without getting back to a normal routine. Thus why I had to return to work in order to recover more. I know that radiation will probably bring both of those numbers back down but as I said, I'd rather do it once than twice.

Motivation and initiative continue to be problems for me. They are slowly improving but I'm worried about the damage that will be done before they recover enough. (Bills have to be paid no matter how little motivation I have.) I have also noticed strange little things like my temper not being as long and me being unusually snappy. I am hoping both are just temporary. We'll see what the outcome is in a few months time.

Ok, I think this is long enough now. I have to get my son on the school bus then head to work. *huggles*

I'm Taking the Standard Path

Ok, so this is a rare type of thing for me but I've decided, after much deliberation, to take the standard path and do radiation for my tumor. It really came down to me being against the doctors and just about everyone else I talked to so I decided that this time I need to not let it drag out the 10 months I let it go with surgery. There's pros and cons to radiation but in the long run I have to believe that the pros outweigh the cons. Whether it does or not remains to be seen but in the world of cancer you have to make your decision and believe it is the right one at all costs. There is no right and wrong answer with brain cancer because truthfully, there is not cure. You just have to manage the tumor the best of you ability and put your trust in God for he is the only one that can cure it.

The main issues with radiation in the brain is that it can only be done once in a lifetime. This is the one thing that scares me the most. My tumor is still on the slow side and, unfortunately, gliomas tend to transform to higher grades as well as return. So I am playing the one time card on what could be a non-issue for a while. If my tumor does transform it will become the most deadliest type of tumor GBM (You've heard this mentioned with senator Kennedy). If it makes this transition, I have already played what is first mode of defense against it. However, I guess I have to believe that in the time it will take mine to transform, there will be new technology out there and possibly even a cure. Something the doctor said to me made a lot of sense and part of my decision came from the words. "With an Astrocytoma, even a grade two acts like cancer and invades the brain. Radiation is an option with it. With a grade three, it's really not even an option it's a necessity because if you wait, it could be too late."

Anyway, they are supposed to call me in the next two weeks and we will get started. I will attend sessions daily monday through friday for six weeks. Side effects tend to generally start in weeks 2-4 and can range from nausea, fatigue, hair loss, effects like a sunburn, headache, to minor mental disturbances. These can last for up to 4-8 weeks following the end of radiation.
The biggest complaint and the only one not usually able to be "treated" is fatigue. The other major high risk we run is that my tumor is near the optic nerve. I don't pretend to completely understand this but I will explain it to the best of my ability. The brain can handle 6000 rads of radiation before the good brain cells are unable to recover. The optic nerve can hand 5400 rads. Of course, we want to use as many rads as possible to destroy the tumor cells. However, we will have to not use the full so we don't damage my optic nerve. He hasn't presented me with the full plan on doing this yet but he is going to simulate it to see if we can come from a different angle and avoid it more or just how much the optic nerve will actually receive. I'll know more next time we talk. As I told him, that's one deficit I'm not sure I'm willing to take the chance on right now at my age. Therefore, I guess there's still a chance radiation will become something to tuck away but for now you all are aware of the plan.

Just Passing Along Some Updates

And these are not of the strictly medical kind just sorta...

I have officially finished my surgery blogs. They have been posted under the day they represent. To find them easily, you can click on: Surgery . Otherwise you can read them by going to any of the dates from 6-10 thru 6-13 and going to the posts after 10:50 PM. All of these are backdated to be on their proper dates.

Also, I have finally posted the Frankenstein picture that I set out to take at the beginning of this journey. It was posted today.

I think that wraps up the major parts now about surgery and recovery. (I've pretty much written about recovery in my updates.) It's official now... one thing off my list. :)

The Long Awaited Picture of...

FRANKEN-AMY!!!!

I said right from the beginning I had one picture that I had to take. It was doomed for failure when I realized I never took out my green face paint from my halloween stuff. (Truth is, it's probably a good thing I did forget since it would have probably been impossible to remove without causing me pain at this stage.) However, a luxurious face mask peel was found to take its place. Also, I had planned the picture when I assumed I would be getting staples instead of stitches so it doesn't look as much like frankenstein as I was hoping but this isn't him... it's better it's Franken-Amy!!! So maybe the picture isn't as good as it might have been but...

Here she is, complete with neck bolts... (Do not read further if squeamish)

The Explanation that I Received

One of my first questions to the doctor yesterday was why part of the tumor was left if it was determined that it was a grade three?

This is my understanding of the explanation that I received:

The red dots are good brain cells. The blue dots are tumor cells. As you see in most of the picture on the left there is a high concentration of the blue dots in most of the tumor. (The high concentrated area is what shows up in the MRI) This is the area that the doctor was able to safely remove in a way that would be beneficial to me. However, you also see the area that is circled. This area has a lot more red dots than blue. Therefore, in this area it isn't really beneficial to remove it surgically. This is the area we will attack with the radiation. Actually, I should rephrase that. The radiation will be highest concentrated on the bed of the area that was removed. However, there will be radiation that goes into the other areas hopefully killing tumor cells. I'm sure I'll have a better explanation of the radiation side of things after I speak with the Radiation Oncologist on Tuesday. For now, this is the answer I received on why my tumor was not able to be removed more.

Hope this helps those that asked me questions.

Not Just Any Brain Tumor

Well, we saw the doctor for the first time since surgery yesterday. It was quite a day to say the least. This will be in no particular order and may seem a bit jumbled because there is a lot to get out and I haven't fully wrapped my own brain around it yet so... well, just bare with me.

1. The doctor says I look great and everything seems to be healing well. He was pleased with how things look.
2. I still don't know when I will be returning to work (gotta speak with the manager of my short term disability claim sometime today before I will know.). However, I have been cleared to drive. YAY!!! John and I will be going out a few times over the next few days until I get the hang of it again and make sure I feel strong enough.
3. I can resume light duty activities as long as I listen to my body. This means I can maybe start light weights and lift things a little like I've been doing. *Shush don't tell*
4. Ok, I'll cut to the chase. My tumor pathology also came back. It is an Anaplastic Astrocytoma glioma. This means it is a full blown grade three tumor that has infiltrated into my brain and reproduces at a rate higher than any low grade glioma. This means it is a malignant tumor. (aka brain cancer) Luckily, my tumor is only reproducing at 6% on a scale that goes to 100% so it is still reproducing very slowly, which is very good.
5. They are suggesting radiation to follow to take care of the tumor that remains. I speak with a radiation onocologist here locally next tuesday to discuss this treatment and so John and I can make the decision if we really want to do this. In the brain, radiation can cause either short or long term problems with functions including memory, intellect, and other high function areas of the brain. It can also cause severe fatigue, nausea, etc, during and after treatment. This is a lot to consider since I am sitting here with absolutely no problems.

Ok, I think I summed it all up pretty well. There's a lot more but I really don't have it all sorted in my head enough yet to discuss it. I will type more as I know more.