Scary Day

I call my brain a zinger because of the resemblance of my MRI's to a hostess zinger:

The frosting is my hair, the cake is my scull, and the creamy white filling is my tumor. From the outside you never would know about the filling until you bite into it.

I also get very sharp, but short headaches like someone is stabbing me in the brain with a pen. I call these 'zingers', and they generally happen 2-3 times a week.

Today I had two really bad zingers (Head pains not the snack). Two in one day is odd, and two bad ones really shook me emotionally. My daily life is pretty challenging, but I have been dedicated to plowing through the daily headaches and exhaustion to live large. I have read a lot of other survivor stories about having seizures and waking up in the hospital. To date I have been blessed and nothing like that has happened to me. Today I could see that happening. Although the pain only lasted a few seconds, the aftermath was a glimpse into the future that I carried all day.  I know brain tumors usually don't get better. I know all the treatment I went through was an attempt to slow the growth. I don't think about these things on a daily basis, I ignore them the best I can. Today they slapped me in the face, now fearing that I might wake in the hospital tomorrow.  Time will tell, time heals, and time to stop my whining. I will wake tomorrow and give it my best shot.

Found Some Headache Relief

I went to go see the pain specialist for my continuous headache. She prescribed Gabapentin  - a drug for relief of neuropathic pain. She also said that I should consider acupuncture.

The Gabapentin trial did not go well. I was only taking 1/3 of the prescribed dose (100 or the 300mg/day) as a ramp up for a couple days and I developed severe gastro-intestinal problems...and still had the headache. I called the Drs office and the nurse said to stop taking it. It was a miserable week.

There was some fruit from this episode. The doctors suggestion about acupuncture got me thinking. Being an engineer, I have a very analytical mind. The idea of acupuncture and qi in general, in my opinion, is a mind over matter mechanism. So I thought to myself, can I skip the needles (and save lots $$$) and just train my mind to overcome the headaches? So I set off on a quest to convince myself that my head does not hurt.

I have a pretty intense mental process that has server me well in my career, being able to concentrate for very long periods, and continuously dissecting problems has made me a successful engineer. When I 'got sick' a few people said that I would have to slow down and take it easy. I have recently realized that I don't even know how to do that. My mind is constantly running.

Now this might sound weird, but note I am not a normal person. In the spirit of talking myself out of my headaches, I would drop everything I was thinking about and 'confront' the pain. I clear out all my thoughts and gently focus on the pain. I look inside myself and isolate where it hurts.  Without my mind churning on the problems of the day I am able to only feel the headache as if it were separate from my body. In this state, I would take the positive sensation of deep breaths and direct it to the pain. I have to keep my mind very quite while doing this - no other thoughts. With each deep breath I can feel the pain subsiding. After about 5 minutes the pain is gone and I can move on with my day.

Some might say, well, this is what 'taking a break' means, duh. Up till now, this has been a foreign concept to me. Its working great for me, and I am further pleased that I am taking less medicine.

Perpetual Monday Morning

I am sorry that I have not wrote in a while. I am doing well, well but quite boring from the brain tumor facet of my life.

The left side of my face still tingles like I just got slapped when I rest. This has not progressed much since its onset a few months ago. Sleeping is not restful, I wake every day with a hangover feeling like I only slept for an hour or two...that Monday Morning feeling....every day. This sounds depressing, but I keep my head up and a smile on my face.

I am going to see a pain specialist next week to see if I can do something about my chronic headaches. 

I am still working full time, better that 40 hours per week. I have been spending a lot of time with my family, including frequent baseball games watching my Son play. I have also starting practicing more with the garage band I am in. Hoping to squeak in a camping trip too. Keeping busy indeed. 

So I'm still kicking...thanks for reading.

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.