Plowing Ahead

I have not posted in a while, not much has changed in tumor land. The Ativan is still doing a decent job at keeping the chronic headaches at bay, but I can tell my body is starting to develop a tolerance to it. Luckily, as I had hoped, The Tramadol I used for headaches a year ago and developed a tolerance to it, is now effective. I have the quarterly MRI this month, not expecting any changes. I still have flashbacks to the state when I was in radiation and chemo treatment. Its a overwhelming feeling of exhaustion and nausea that lasts for about a week. These 'attacks' come on once every three months. I do not know what brings these on and have nothing to fight it except sleep. Where I normally get 8 hrs sleep per night, when these flashbacks happen I will be in bed for two days.

I am still working full time as a engineer. My logic skills are sill sharp as a tack.
This spring I volunteered as an assistant coach on my 14yr old's baseball team. For those of you that know me personally, you can get up from the floor. We know that I never played a game of baseball in my life. I told the coach that, but there were not enough volunteers. We have 2-3 games through the week and practice both Saturday and Sunday. This is a lot of exercise getting the boys warmed up and running drills with them. Combined with work, this takes ALL of my energy. I regret that my garage band has not played in a while - sorry guys.

So I keeping up the fight, plowing through life in the face of my tumor.

Another Solution for Cronic Headache

Ever since last October (see this post) I have been trying various 'natural' methods to curb the intensity of my daily headaches. I cut back on coffee and sugar. I would regularly take short breaks to meditate and attempt to flush the pain out of my head. All of these had limited success on a daily basis, and did nothing to prevent the major headache attacks that would last for a few days.  Two weeks ago one of these attacks came on that did not dissipate in the usual three days. My head hurt so bad I had to take a few days off of work. I started to cry two times trying to go to sleep in fear that I was not going to wake up because the pain was so intense.   

 

Not Funny,  not me, but I can relate

But just as I stumbled upon Tramadol, I made another discovery last week that virtually eliminates my headaches. I had woken up at 12:30am one day last week with my head screaming in pain. Could not lay there in bed, standing up and moving around makes it feel a little better. After trolling around the house finding quite things to do,  it was 3am, and I needed to 'wake up' for work at 6 - something had to be done. I had a prescription for Ativan (wiki) to help me sleep, with strict instructions from the doctor to only take at night. I decided to take it, rationalizing that if I oversleep and am late for work, so be it. At this crossing I was gonna miss work anyway. I took one dose, and went to sleep as expected. The miracle was that my biological clock woke me up at 6 as usual, and the headache was practically gone! That day I put two and two together and hypothesized that the reason I can sleep with the Ativan was that it makes my headache go away. I felt pretty good all that day. Now "practically gone" to me means I am to the point where it feels like a couple of aspirins would take care of it. My daily headaches are 100x worse than this, so I am happy. Next I set out to prove my hypothesis that Ativan quells my headaches. The next day, I did not take a Ativan at night, but in the morning. Good news was that I felt much better that day. Bad news was that was my last dose from a prescription with 0 refils. Time to call the doctor and see if I can talk him into prescribing Ativan  for daily use for headaches. Call went well, I got a new Rx (1mg 3x/day), and because of Ativan's anti-seizure properties, he said that we can look into tapering off the Keppra I take for seizures.

Lets hope that I do not build a tolerance to this as the wiki talks about.  If so, I will try to go back to Tramadol, which had the same effects for me but eventually developed a tolerance.
 

MRI Shows tumor still stable

I had an MRI and oncologist appointment today, all good news.

The oncologist made some unsolicited comments. "Your genetic markers are very good. I am not worried about you surviving this."

Makes me wonder if he started reading my blog....

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.