Some preliminary biopsy results in

I called into Dr. Munoz office yesterday and talked to Robin. She said that the lab still had some tests to run, but the tumor was identified as a 'Grade 2 Astrocytoma' At this point, Dr. Munoz had not reviewed the results, and more testing was to be done, so what exactly this means for me is still unknown. I set up an appointment on Thursday, 12/2, to talk to Dr. Munoz about the results and where we go from here. They also suggested that I talk to an Oncologist (Dr Aiken), so I made an appointment with him too the same day. I also get the staples (stitches) of of my head that day too. Thursday will be a big day.

I continue to feel pretty good, the only problem being headaches which are well controlled with the meds. 

Feeling OK day to day

We are still waiting for the biopsy results, and the subsequent meeting with Dr. Munos that will be scheduled this week. The medication does a good job of keeping pain away, but it still keeps me very jittery and I have difficulty sleeping. Since the surgery I have had only small side effects. I had some problem with seeing weird visual artifacts and what felt like muscle spasms in my left eye. This only happened twice for a couple minutes, but I will still bring it up with the doctor. As before the surgery, I still cannot make it through the day without getting mentally exhausted and a bit confused. I have been waking up at 6am or so, and by 2pm I need some quite time. So not much hard news, I thought I would share some of the emotional aspects today....

One thing that I have observed is a decrease in my feeling of urgency doing daily activities. Holly, Anthony and I went to Culvers (one of my favs) yesterday for lunch. Usually I would be prodding my companions, 'do you know what you want yet', 'are you done eating?', 'ok, lets scram'. I would push the schedule to get in and out as soon as possible, even though we are not really in a hurry for anything. This attitude has turned into a passive interest in the activities around me where I can peacefully wait for things to happen rather than using my usual cattle prod to make'em happen. This must be much more pleasant for those around me.

The outpouring of support from friends and family is inspiring. On the surface this tumor episode is a very serious and unfortunate event, but it is having very positive effects on the bonds and relationships of the people around me. This event has acted like a spark for people to put aside the hectic details of their life and reconnect with ones they love. Its a pretty callous and impersonal world we live in these days, and we are constantly being bombarded by bad news. It seems like the world relentlessly tries to push each of us into a lonely, fearsome dark place. Then an event like this happens, and people turn their attention to their family and friends. I see loved ones reaching out daily to help each of us build a better atmosphere, establishing circles of support to keep the evils of the world at bay. It would be great if there was a way to accomplish all this without me getting a tumor, but that is kinda selfish :). Well, I hope this made some sense to you. Perhaps you could pick up the phone today and connect with a loved one that may have drifted away before some adversity pushes you to do so. 

Events the day of surgery

The hospital was very busy on Tuesday, and my surgery got pushed out from 7am to like 9:30am. My BFF Matt came by first thing in the morning to wish me luck from my hospital room:

They wheeled me off to Pre-op at about 9:00, my sister Jean accompanied me until they actually wheeled me into the operating room. The Pre-op area was very hectic, and I could not believe how  many questions the doctors and nurses were asking me, and getting irritated when I got confused. When one of the nurses accused me of withholding some information, Jean really got in their business and you could almost see tails going between their legs walking away. It was a blessing Jean was there for me.

Things get a bit fuzzy in the story here. I was wheeled into the OR and all I can recall is that I was upset that I did not have my glasses on the see all the cool equipment. The anesthesiologist said good night.....and I was out.

The next think I feel is that I thought I was dying. It was a very distinctive sliding feeling from reality. I was trying to scream and kick my feet, but nothing doing. Then I heard the doctor tell me that I am waking up and I should take slow deep breaths. The doctor was right, the surgery was over (I think it took under 2 hours), and I was still alive. The put me in a post op area for a while where several friends were able to come and see me. I had a really bad headache, it was noisy there. There was no ICU room available, so I think I was in that area for a couple hours.

During pre-op and operation, My sister Renee, Friends Izzy, Deb, and Lynn (sorry if I missed anyone) Were with Holly in the waiting room. Thank you so much for your support during this period.

I eventually got into my ICU room, not sure what time it was. I was very frazzled and had a bad headache. I eventually got a nurse in the room that listened and took good care of me. I was eventually able to get my headphones in and lay there listening to music on my Ipod all night. The battery on the Ipod went dead at about 5am (bummer) and I watched TV for a while. The doctors came in doing tests every 30 minutes or so, and eventually told me I could go home if I wanted to. I jumped at that.

Right now (with pain medication for pounding headache) I feel OK.  I did not loose any feeling, cognitive ability or motor control as a result of this procedure. The doctor only did a biopsy, he did not attempt to remove the entire tumor. He did say that he got a good portion of it to reduce some of my symptoms. So now from here, we have to wait for the biopsy/pathology results, and we will meet with Dr Munos next week to determine where to go from here.


Till then, I will keep my spirts up and sport my stylin' crew cut

-Ed

Events at the hospital on Monday

After my haircut, Holly, my sister Carol, and I went out to lunch then Holly and I headed downtown to Rush University Hospital at about 3pm. The check in was a bit emotional, and we headed to our room. This was Monday night, and I was scheduled to have another, much longer MRI to get the 3D version with fiducial markers. These markers show up on the 3D MRI on the computer, and the operating room has a camera and laser system that allows the doctor to point at something on the 3D MRI and have a laser pointer locate it on my actual brain. This is all very high tech, but looks holloweenish:

So that's me right before the last MRI with the markers on my head. The MRI took about 2 1/2 hours, I did not get back to the hospital room till about 10:30PM. Holly spent the night in the room with me. I do not think either of us slept very well.

Helen gives me a buzzzzzz cut

Thanks to Helen for the buzz cut. Brain surgery with style....

Our friend Helen gives me a haircut to make me look good and help out the doctors.

Going to the hospital today

Well, today is the day I check into the hospital. I still feel detached from the whole ordeal. The stress involved with all the potential outcomes is by far the worst symptom I have. I have come a long way in my life, facing several adversities with diligence, tenacity and perseverance - the attitude of my life. These cognitive attributes are the foundation of my personality that has led to so much success and happiness in my life. This is what I fear loosing. The doctors say that in addition to loss of cognitive skills, I risk some paralysis in the left side of my body. I do not fear these physical threats. I fear the loss of ability to understand,  fight and overcome them.

On a lighter note, I had a very nice weekend. Holly and I had a date night Saturday with dinner and a concert. All of the friends in the neighborhood had a Thanksgiving dinner last night - OMG was that some good food! I would like to thank everyone again for all their support.

Some Pics with the family

We took some cute pics the past couple days hanging out...

Meet with Dr. Munoz

Holly and I drove downtown to meet with Dr. Munoz today. He painted quite a different picture than Dr Sani did.  Dr. Sani was planning on opening a 4" square, taking out as much as he can and doing the biopsy to see what it was. Dr Munoz plans on opening a 2" diameter hole, removing a some portion, and going from there.

Dr Munoz is concerned about the effect the tumor is having on the surrounding brain tissue and wants to analyze this before deciding if any of the brain tissue needs to be removed.

Initially, this was very shocking for me. Dr Sani made it sound like an open and shut case. Dr Munoz was much more reserved about what the root issue is. After talking this out with several people (again, thank you everyone that listens) This may seem like a more drawn out process, but should be better in the long run.

Thank you Jean for lining this doctor/hospital up for me. I am sure it will improve the outcome.

So the general plan is:
11/22 Monday - Check into Rush 3PM or so
11/23  Tuesday - Surgery/ICU
11/24 Recovery / Possibly go home
11/25 Home

Then the Biopsy results should be back late the next week (11/29) and Dr Munoz will decide where to go from there.

Second MRI, continued health issues, help from Jean

On Tuesday, 11/16 Holly and I went to get the second MRI with topography. This seemed to be a bunch of Hype, It did not seem any different than the first.

I continue to have serious anxiety attacks, severe heartburn, and tightness in the chest. I also have been having serious night sweats - OMG waking up at 4AM soaked!

My sister Jean did some investigation for me, and suggested (if you can call it that) that I switch doctors from Dr Sani in Aurora to Dr. Munoz at Rush University Downtown Chicago. She was able to get him to look at my MRI and get an appointment with a couple phone calls. Dr. Munoz presented my case in front of a 'tumor board' at Rush and I got an appointment with him on Wednesday morning to discuss the course of action.

Some normal activities

This weekend I tried to get some normal activity in. My band (Unbalanced) came over and jammed for a couple hours on Friday night, and I had my BFF's from growing up come over to watch the Bears and Vickings play on Sunday. A few of the neighbors also came over Sunday, and Holly's Cousin Kurt and his family stopped by. All in all there seemed like 30 people here.

It was rally nice for everyone to come over and show support for me. I really appreciated it. I Thank each one of you.

Daily life between tests.

The time waiting for the drugs to take effect and get the second MRI are horrible.
There is all the worrying about collateral damage, morality, not being to provide for the family, on and on.
Then add on the effects of the drugs. My gut is wrenched anguish, severe heartburn, headaches, can't sleep.I really do not think any of this has to deal with the tumor, but more related to the meds and anxiety of the unknown. I also noticed that I started getting hiccups every day, and my teeth were very sore. My teeth are so tight together, I cannot get a piece of floss between them.

I kept going to work, but the confusion episodes are getting longer (again, maybe from the anguish). It does keep my mind off things, but I really do not get anything done.

OMG - what do you do now????

Well thats a lot to swallow from going to work on a Tuesday morning to finding out you have a brain tumor on Wednesday. There is a bit of denial at this point. I feel fine, but my first order of business was to make sure all my finances are in place in case of the worst. 401K laying around, bank accounts, etc. I need to make sure all of this is set and in good order.

I also have some issues with short term disability at work. I just started a new job in June, and their STD starts after 6 months. There are some extenuating circumstances here, I hope it will work out.

CAT Scan

I had the CAT scan on 11/10. This is A LOT more pleasant than a MRI. This came back with 'no calcifications' meaning that there are no calcium deposits (I think) in the tumor. Not sure what kind of news this is.

Dr Sani Visit

Me and Holly had an appointment with Dr Sani at Rush Copley on 11/10/2010. He reviewed the MRI I had taken the the day before and indicated that there was a tumor and what appeared to be swelling in the area.
He indicated that the course of action would be to
1) put me on anti - inflammatory drugs to get the swelling down
2) put me on anti-seizure to stop symptoms
3) take another MRI in a week, with reduced swelling, and a 'tracktogophory' to map the nerves in the area.
4) have a CAT scan done.

He said that the surgery would be in 2-4 weeks, in hospital for 3 days, then off work for a month. NO DRIVING during this time.

I asked him about some statistics:
Mortality rate = 1/2000. Much lower for someone otherwise healthy.
Occurrence = 1-20K to 1-200L people get this.
Complications / collateral damage = 5-7%

He said a biopsy was needed to further qualify what this was.

The Complications / collateral damage could be:
-left side weak, numb
-ignore right side vision
-loose ability to concentrate (ouch for an engineer)

He said that it was a little smaller than a golf ball, but the swelling made it look bigger.

First MRI

So, On Tuesday, 11/9, I stopped at the clinic at 7am on the way to work to get the MRI Dr. Dreyer ordered. Bada bing bada boom, the MRI was done and they asked me to take a seat in the waiting area till the radiologist and take a  look-see. 20 minutes goes by, 30 minutes goes by, 45 minutes goes by. I get up to ask whats going on and they tell me the radiologist wants to talk to me. He pulls me in an office and asks why I was having the MRI done. Bla,Bla Bla I go through the history, he says "OK....well.... there is an anomaly on the scan and you need to go to the emergency room. If you cannot get a ride, I will call an ambulance."

(my jaw drops)

I call Holly, She grabs Izzy (do drive my car back home - Thanks Izzy) and off we go to ER. We did stop at Micky D's for breakfast - I was feeling fine. This was clearly a CYA at the clinic.


The ER doctor was quite an experience. He took the liberty of looking over the MRI and scaring the pants off Holly and I. He apologised that we was not any good at delivering tragic news. WTF!


Finally, after 3 hours sitting there in ER, a PA came down from Neurosurgery and told us to ignore what the ER doctor had told us, come back in the AM to see Dr. Sani and he would advise us.  Very stressful day.