3 Month post-treatment MRI seems clean

I had an MRI today. Oncologist said it looks OK to him, but will wait till report from Radiologist. This waiting means nothing because if the Radiologist disagrees, the Oncologist has seniority.  So I'm good.

What about the increased headaches? Take more tramadol.
What about the tingling left hand side of my face? Well, this is more interesting, but he did not seem concerned about this. He said that my brain is 'changing'. Changing can include things like long-term results of the radiation, not necessarily tumor growth.

I think he is looking for much more serious issues, like not being able to move a limb or feel my hand.

Well that's fine, but it is maddening to know I have a BT, have a screaming headache, and my face tingling like it fell asleep. I guess, I know it can be worse.

I am wondering why he even wants to see me if I can walk in.

p.s brain fart - this was originally posted as "6" months post-treatment, its only been 3.

How can I tell if I loose my Judgement?

One of the more disturbing symptoms of brain tumors is 'loss of judgement'. Seeing Brain Tumors are a degenerative disease, I am always on the lookout for new symptoms as an indicator that the tumor is progressing. Physical things like numbness, loss of vision, weakness are easy to recognize. I take a look at mt left hand daily to make sure I recognize it as mine. Psychological symptoms are another story. It scares me because I don't think people realize when they are loosing it. I do a lot of reading on message boards and blogs of fellow BT survivors, and I occasionally see messages that are obviously not constructed properly, like "du,..um in blay, cot". The author probably thought what they wrote made total sense.

At work, I make a habit of reading messages I send to make sure they are what I intend to say. I get interrupted a lot, so I always double check before I hit send. The other day I noticed a message I sent:

"some 096-9XXX files don’t habe the .ini file attached. I recall they are stored somewhere on G:\, con you point me there?"

"con", "habe" Are obviously not correct. How could I mess up such a simple message? "I" was probably not there what I hit send.

Personality changes are another symptom of BT's. I have consciously made some personality changes. The prospect of having your life cut short changes your outlook on life. In some situations I now take a 'I don't care' position. Living with almost constant pain also makes me short-wicked. But there are some things that happen that I don't understand. I relationship at work has fallen apart to the point where a co-worker will not communicate with me. I pride myself on my ability to get along with everybody. I gave him an general apology for what might have caused this, but still nothing. I worry about being discriminated against because I have a BT. Do people think that I can't perform engineering tasks because I have a BT, and just write me off? "I" think I can do my job, but I'm not 100% sure who I am anymore. Perhaps it's 99%, like a crack in the dam.  

MRI coming up in mid May

My regularly scheduled (every 3 months) MRI is coming up in two weeks. This one is going to be at the new Hospital at Rush University on a brand new machine. I hope it is not as noisy. MRI machines are very loud.

I'll be interested what they say about the progression. That numbness feeling I get around my left eye has grown up onto my forehead and and sometimes down my cheek to my jaw. The doctor seems to dismiss any change in the MRI's due to a lack of symptoms. Perhaps the doctor will say this is not a symptom if they don't see any progression on the MRI.

Other than the face tingling, I caught the flu for the third time in life a couple of weeks ago. I felt better for a couple'a days, then I have been fighting bad headaches for days on end since. Norco is the only help when the headaches get bad. I've been poppin those a lot lately.  

I think about all the possibilities a lot, but I do not get depressed about it. I have a what ever happens happens attitude about it all.

Unsolicited contact from NO Nurse

My Neuro-Oncology Nurse dropped me a note this week asking how I was doing. This was quite unexpected, I have called their office a 'cancer mill' - I think my doctor has a 100 patients at a time. For someone there to take the time to contact me added a lot of compassion to their otherwise cold and calculated office.

I told her about my frustration trying to get in shape. Strenuous exercise seems to make me sick. She responded that my body is telling me its not ready for that, the brain is a slow healer, and to give it more time. Not what I wanted to hear, but her insightful advise is probably right on. I'll stick with low impact exercise for now.

2 Months Past Treatment

I have off of chemo for two months now.
During Chemo, I would have to take two days off of work for the last two days of the cycle. I would be so exhausted, my head would hurt constantly, and none of my thoughts were clear. The following weeks would alternate between good and not-so-good.
Off Chemo, I have the similar problems, but a much lower intensity. I no longer have to take time off of work, and am working full time as an Engineer taking on challenging projects. I still have good and not-so-good weeks.  I wake up with a hangover-type headache every day. I still take the Tramadol pain medication daily, which helps a lot.

I have not felt 'great' - as in the moments before my first MRI. I don't know if it was the Chemotherapy Radiation and Psychological issues (CRaP), but daily life is a challenge like a heavy weight on my shoulders. If this ever goes away, it looks to be a long road. 

I have been venturing out of my hole. Went to a couple concerts, a local one and a big arena one.
I feel much more confident in 'dangerous' activities like swimming and biking.
Any big outing requires a day of rest beforehand.

I am still having problems exercising. It seems that I can do easy activities like walking for long periods. As soon as I get my heart pumping I get dizzy, and I get physically ill (fever) the next day. It makes me scared to exercise.

Some strange symptoms I have been having; Numbness feeling around left eye/temple that goes away the moment I touch it. My left eye occasionally has muscle spasms that last for hours. Left arm occasionally feels real week, I feel the need to hold it in a sling position when I walk around. My jaw has some uncontrolled spasms when I am going to sleep. Sleeping is totally different now. I often have the sensation that my body has fallen asleep when my mind is fully awake. When I wake, it does not feel like I slept at all.

This is not as bad as it sounds, none of this holds me down. I trust that if I keep pushing, things will get better. I'm just throwing this out there for other BT buddies to have an example of what to expect post-treatment.

I'm really looking forward to camping in the spring....

Break'n the Law, Break'n the Law

I had a dream the other night that I had somehow broken the law and the feds were after me. It was just a matter of time before they caught up to me. The evidence was clear, when they caught me I was headed up the river. Can you image living like that? No long term plans. No being seen in public. Not sure of who to trust.

I just watched the movie Goodfellas (mobster life) the other night and all the Blogo stuff on the news. So my mind has plenty of source material, but I think I know how that feels.

Matt - the title goes out to you.

Body ache and fever flashback

I had another episode of severe body aches and a fever just like what happened in Feb and April of  '11. Although I have been exercising more and playing ball with my son, my body aches were way disproportionate to my exercise.  Then last night I got the chills, went to bed early and woke up with a fever. Didn't get much sleep, and walked around in a daze today. Not sure if this has anything to do with the BT  (or the treatment) but this type of thing never happened before.