9 Month Post-Treatment MRI Stable

Another 'routine' brain MRI, another stable report. The oncologist says he even looked back to the first MRI's and he sees no change. This makes me feel like these $5000 tests are a waste of time and money.  The doctor checks to see if I have strength in my limbs, that I can hold my hands steady, and looks in my eyes. If I didn't speak, the appointment would take 2 minutes. The doctor continues to insist I go through this every 3 months.

I did report that the tingling on the left side of my face has changed to tiny, unnoticeable muscle spasms. This is pretty irritating,  but no cause for any treatment. On the headache front, not much has changed. I have been too busy to look into natural medications and start yoga. I am supposed to work on things that are important but not due, shame on me. I did find a couple of Tylenol #3's in the couch, they seem to help keep the mild headaches from getting worse.

Happy Holidays,
Ed

Done with Tramadol, back where I started

After almost a year taking Tramadol for my headaches, I have quit it.
When I first stumbled on this pain killer (post), it was a godsend. After a couple months it stopped being effective, so my doctor said take more. After taking more became ineffective, my doctor said take more.
About two months ago I realized that my headaches were a lot worse at this high dose than before I started and decided to quit. I slowly ramped down my dose to nil and now the only Rx I am taking is Keppra (anti-siezure). Now I am back where I started, the headache is perpetual but not especially painful. This leaves me functional but not very happy- just as I described in the aforementioned post. This experience over the past year has fortified my disdain for pharmaceutical drugs. I need to find a natural solution for this.

Next MRI is in November, I don't expect any bad news.

Its not all bad - I can see the light

I was looking through my recent posts and got the impression that my life is miserable. This is far from the truth, day to day I am a happy go lucky dude. This blog is a series of snapshots into my life, and I usually take a picture when I am down - so that's only what you see.  I guess writing about the down makes me feel better. That said, its been a rough week.

Last week I found out that my pen pail friend from AZ that was diagnosed with the same tumor as me when I was in treatment has passed. 18 months from diagnosis to passing. This alone is depressing, but loosing my only confidant and friend in Brain Tumor related maters has left a void in my life. Understand that I do not bring up or talk about my condition and symptoms to many people.  People that don't have brain tumors usually do not understand what I am talking about and either say 'wow', and look at me like I am a psycho or laugh it off, often adding that that happens to them too.  RIP KA, I will miss you.

I have been ramping up my extracurricular activities. After my camping/hiking trip, me and the family took a trip to see my sisters in Michigan. Last week a couple friends took me to see a NFL football game. These excursions are preceded with a lot of anxiety. Just working too hard during the week seems to cause me to suffer with headaches and exhaustion for days. I worry about ruining the trip for everyone if I crash and need to go home. Good news, like the camping trip, I was able to make it through MI and WI trips having a great time and suffering little health consequence. It brings me great joy knowing that I can live alive with my tumor. 

6 Month post-treatment MRI clean

I had an MRI yesterday - Good news - No new growth. Here is the doctor-speak from the radiologist:

IMPRESSION: In comparison to the prior MR study dated 5/15/12 there is

interval mild decrease in size of the small nodule of enhancement along

the anterosuperior wall of the resection cavity in the right parietal

lobe. There is associated mild decrease in the increased cerebral

perfusion demonstrated on the prior MR study dated 2/17/12 in the same

area. No new areas of abnormal enhancement are present.

The 'Resection Cavity' he speaks of is where they took the biopsy from, a relativity small part of the tumour.  I have a question into them about whey they never comment on the much larger (10x) diffuse area. Its kinda weird that they focus on "small nodule of enhancement along the anterosuperior wall of the resection cavity". This area is smaller than a pea compared to the diffuse area that is the size of my fist.

The doctor was not concerned about my advancing tingling in my face. Again, I think he is happy to see me walking around. We decided to stop the Tramadol for the headaches. He is of the opinion that any medication that would help this is going to have undesirable side effects. I told him about the metaphysical things I have been trying (mediation) and surprisingly he said that was a great idea, much better that using medications. He also said acupuncture 'can't hurt' - what do you have to loose?

Lastly, I asked him about the frequency of these appointments and MRI's. To me its pretty obvious that I am doing great and getting a MRI every 3 months seems like a waste of time and money.  He said that the plan is to stick with the quarterly exams for up to 5 years, then go to once a year., assuming my condition does not degrade.  This tells me that my current health has little to do with the probability of further growth, and his concern does not subside till the 5 year mark. Putting the pieces together, Remission starts at 5 years. I am about 2 years past diagnosis and looking good. I can live with that. 

Brain Tumor Goes Hiking

I am still having continuous problems with headaches and endurance. Two years back, my doctors would tell me that I would have to discover the 'new me'. I am starting to accept that how I feel now may be the 'new me' , and I cannot let this poor state hold me back from the things I love to do. In this spirit, My Son and I, with my BFF and his Son went camping and hiking over the weekend. I was very worried that I would not be able to do this, or would pay the consequences like I did on previous smaller excursions. Good news - the weather was gorgeous, the trip went off without a hitch, and I am still standing the day after. Brain Tumors can go camping!

Me and my Son about to enter the mysterious cave

Roughing it

You can see the rest of the pictures here. Here is where we went.

You can Do It. Live Alive.

MRI next week. Not expecting any changes, not worried.
Thanks for reading, and many thanks to those who leave comments with encouragement.

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.