Met with radiation oncologist

Yesterday (12/29/2010), Holly, Jean and I met with Dr. Diaz (attending radiation oncologist) in the radiation oncology department at Rush University. After giving my History to the nurse, we met with Dr. Marsh (chief resident, I think). Dr. Marsh is Fabulous with a capital F. He is very personable, and OMG, knows what he is talking about. He had a medical student tagging along with him, and Dr Marsh was quizzing him every 2 minutes about the symptoms I was describing by asking for the neurological explanation behind them. There were so many 5 dollar words being tossed around, each sentence was worth at least $50.00. That poor students head must have been spinning, but he was getting the lesson of a lifetime. It is nice knowing that not only do I have some of the best doctors in the world looking after me, but new doctors are being trained at the same time.

Dr. Marsh had a neurological explanation related to my tumor for each of my symptoms. I don't think any of us understood what he was talking about, but it was reassuring that he clearly had a firm grasp of the subject.

From there, Dr. Marsh went into some clarifications about my diagnosis. He explained that the tumor grading from 1 to 4 is not as clear cut as it sounds. Grade 1 is a benign tumor that is usually just watched, where grade 2 can progress to a 3, and 3 can progress to 4. They (the tumor board at Rush) feel that although my official diagnosis is a grade 2, it is close to becoming a grade 3. This combined with the current size and location, is the reason for the drastic treatment not usually done on a grade 2.

My sister then asked if my condition is considered 'brain cancer'. The treatment they are recommending is usually reserved for cancer. Dr. Marsh said there is a lot of confusion around this. Grades 3 and 4 are usually called brain cancer, but any brain tumor is not really a 'cancer'. Cancers are usually defined as uncontrolled cell growth that spreads to other parts of the body. Brain tumors (grades 2+) are uncontrolled cell growth, but do not spread to other parts of the body. So technically I do not have cancer, but Dr. Marsh indicated that my situation is serious enough to warrant cancer treatments.

Dr. Diaz then joined the party. He explained the goal of radiation therapy. Radiation therapy works by stunting the growth of the tumor cells. The radiation cannot be 100% controlled, so healthy parts of the brain are also affected.  This causes collateral damage which can worsen my condition, including damage to memory and cognition. He then posed the question,  knowing the risks, do you want to have this procedure done?  I asked, well, are there alternatives? No. Either go with their recommendations or take the chance of doing nothing and hoping that my condition does not get worse. I asked what is the chance of my condition declining without treatment. He basically answered he was sure my condition would worsen without treatment. Given that, I elected go ahead with the recommendations. 

 We asked if we could have the Doctors at Rush University do the planning, and have a local hospital do the treatment. This would be a lot more convenient for us. They said this was not a good idea. Rats.  So we made an appointment to start the planning (a special CT scan and MRI) , and the treatments will start in the middle of January.

Dr advised treatment plan - Oral Chemotherapy and Radation Therapy.

Dr Akins called today and provided the following recommended treatment plan:

• 5 days/week for 6 weeks of radiation therapy (IMRT) combined with a low dose of Temodar (Oral Chemotherapy) taken every day.
• 1 year of a higher dose of  Temodar  taken at a slower rate 5days/month.
• A MRI one month after the radiation treatment to make sure there is progress.

Some other notes from our conversation:

• The 'careful observation' treatment route is not recommended. The tumor is too large and too close to critical parts of the brain to risk non-reversible deterioration of my condition. 
• The tumor is too large to consider Gamma Knife surgery.
• There are no guarantees here. This treatment should improve my condition, and may make things worse. Lets hope and pray for the best.
• I should be able to continue to work throughout the treatment.

We have an appointment with the radiation oncologist (Dr. Diaz) at Rush University tomorrow afternoon to discuss the IMRT.

Proprioception - the brain does amazing things.

For the record, I found a better description and a name for what happened during my minor seizures in September and October.
 
I was reading a blog of a person with a similar diagnosis to me (http://thelizarmy.blogspot.com btw, thank you very much Liz for this detailed account of your fight) and she described and identified what happened during my minor seizures better than I described it.

She had problems with loss of proprioception, I did some further reading on this, and it better describes what happened during the two seizures I reported that happened in September and October. I originally reported this as a 'loss of motor control', but it was more like looking down at me left are and saying to myself, "what the heck is that arm doing there, and who's is it?" When I commanded my arm to move, it did slowly, but the whole time (30 seconds or so) it was surreal because it did not seem like it was my arm. It was like I was watching someone else move thier arm in front of my face.

I was previously uneducated about the concept of proprioception. Your body (when it is working properly) keeps track of where your limbs are. This information is used to help maintain balance, keep you safe from hazards, and navigate without eyesight (like in total darkness or eyes closed).

During my seizure, my brain forgot where my left arm was. When my eyes saw my left arm, I got real confused because my eyes were telling me one thing (hey, there is your arm), and my brain was giving me incorrect information (that's not your arm!)

Pretty wild, eh?

Happy Holidays, not much new info

Happy holidays to all.

The doctor did call last week and said that the genetic pathology results are in, but provided no other details. The doctor is not available this week, so we will make an appointment for next week. 

Other than that, I have been doing a lot of research and reading trying to make sense of all this. Not knowing what is in store for me has led to a lot of anxiety and sleepless nights. The whole issues of the 'C' word is a touchy subject. The doctors have not said that I have cancer, but they did point me to 'cancer survivor network' web site (http://csn.cancer.org)for support. In addition, the treatments they are talking about (chemotherapy, radiation treatment) are commonly used to treat cancer.What ever you want to call it, there is no cure, and I need to figure out how to deal with this for the years to come. One of the blogs I found a reference to the difference between life after cancer and living with cancer. Again, I am not sure cancer is an appropriate description for my condition, but a lot of people use this term to describe it. Here is the link to this article:

http://www.kevinmd.com/blog/2010/11/living-cancer-living-cancer.htm

The last  couple weeks have been very stressful. Going back to work, the holidays, the late test results. All this on top of trying to understand where my life is leading. Going back to work is a huge step in getting on with my life, and it has been rather difficult. I can perform my duties at work, but it comes with a price. I get exhausted by the end of the day to the point where I just want to stick my head in the ground. I am unsure if this is a side effect of the medication, a symptom of my condition, a result of stress, or some combination of these. The only thing I know is that this is diminishing the quality of life for me and my family. I am trying very hard to understand and overcome this. Reading the blogs of others and talking with people in a similar situation is helping me understand what I will go through and provides inspiration that people can survive.

Again,
I hope everyone had a nice Christmas and will have a prosperous new year.

Ed

Dr Visit to discuss treatment options pushed out till after holidays.

The genetic testing of the biopsy is still not complete - 4 weeks after the biopsy - whats up with that? Seeing that one of the options on the table is to wait and see what happens over the next 6 months, there is no big rush to start any treatment. I told them I wanted the doctors to fully evaluate the situation, and if the appointment get pushed out past the holidays, so be it. I did not have to tell them that twice.

I still have been having my momentary lapses of reason, still every couple days, lasting 15-30 minutes. I may have been able to correlate these to an external event. I have been going to work, putting in full days and have had no problems there. I went to church on Sunday, and had nice lunch at our friends the Pawlaks ( a nice relaxing day), and had a rather severe attack later that afternoon. So its probably not triggered by too much or too little work. It may sound strange, but it might have something to do with bright light. I was facing a large window for both the seizures I had at work in mid October and late November. Yesterday I had to ask Holly to close the sliding door blinds I was facing at the Pawlaks because the bright light was giving me a headache. I will try to avoid bright lights in the future. Don't be surprised if you see me in some cheap sunglasses. I will also ask the doctor about this.

The driving restriction is really getting to me. Not being able to jump in the car to run an errand is really irritating. I cannot wait for nicer weather where I can at least walk to the store. I guess it kinda gives you an idea that I am doing fairly well if this is my biggest complaint.....

No results yet, Dr. appointment pushed out till next week.

I contacted the doctor (Dr Aikens) Today, and the genetic testing results on the Biopsy are not in yet, so we made an appointment for next week, Tuesday. This may get pushed out a day or two to give the doctor more time to review the results and discuss with the other doctors. I don't have a problem with giving them time to think about it.

I went back to work last week, and things are going well. I still have my spells where I have a hard time concentrating, but they come and go. Most of the time I am still on the ball and giving my coworkers a hard time. The folks at Westell have been very understanding and flexible during this whole ordeal. I can't thank them enough for all their well wishes and generosity. Issues at work could have been a huge source of problems, but they have been very understanding. Again, thank you to everyone there.

First day back to work...doctor denied driving.

I went into work today. It was nice seeing all my friends there, hearing their words of encouragement. We are VERY busy, so there will be a lot to keep my mind off all this.

I have been having a hard time sleeping, this is only adding to my problems concentrating. I woke up at 1 am, tossed and turned till 4, and decided to get out of bed and do some work. I worked for two hours, and started feeling dizzy. I decided to go into work as planned anyhow. By time I got in I was felling better, I was feeling pretty normal the rest of the day.

I heard from the doctor yesterday. They said that even though I passed the eye test, they were not going to approve driving due to the (minor) seizures I had. I think this is kinda silly, but I will err on the side of caution. Chad, my friend from work who gives me a ride, told me this morning that he knows someone who had an unexpected seizure and got into a accident with serious injuries. Seeing my seizures and kinda expected, I will stay in the passenger seat for a while.


We are still waiting on the Biopsy results, should be in next week.

Approved for back to work, eye test passed

I had the ophthalmologist appointment today for the Field of Vision test and full eye exam, which I passed. The eye doctor said there are no problems with my vision. I hope there are no other roadblocks to being allowed to drive.

The doctor also approved going back to work today. I will work from home for a week or so, then go back to the office.

We are still waiting for the biopsy results to determine what treatment path I will take.

Trying to move on

I have had a couple days now to digest everything that that the doctors said last Thursday. It boils down to:

• I have a slow growing brain tumor.
• The tumor cannot be removed surgically.
• They can try to slow down the growth with radio surgery or chemotherapy.

So the damage sustained to my brain to date cannot be reversed. The symptoms I have now will probably not get better. That is the bad news.

The good news is that the damage sustained so far and my symptoms are not drastically affecting my life. I can still have intelligent conversations with people, I can still laugh at my own jokes, I can still solve problems.

That last one was a big one for me. This was was biggest concern after I found out about this. I make my living solving problems. Most of my hobbies involve solving problems. So in the past couple of days I set out to see if I could still do it. First one of my ten computers crashed. I was able to figure out it was the motherboard, and ordered a new (actually used - I'm a cheapskate) one. Once I got it I found that there was not user manual available for it and had to kinda guess on how to hook up a couple of things, but I did get it to power up. Then Windows 7 would not start properly and I had to solve that too. I got it all working this morning. I also have been looking into learning a new (to me) programming language, Java. I wanted to write a network music server, and started with some free libraries I found on the internet. I wrote a little test application, and wouldn't you know it, it crashed in the 'free' library. Great - a totally new (to me) programming language, code I did not write, and I need to figure out what was wrong. This was the perfect test. I worked on this for a couple days, a couple of hours per day, and was eventually able to figure out what was wrong. This made my day, my week.

So I am starting a quest to get back to my normal life. I stopped taking the narcotic pain killers about a week ago, and just have been taking OTC Tylenol and Ibuprofen.  I did not want that affecting my abilities in the problem solving exercises I just discussed, and the doctor did mention that they would not allow me to drive while on them. I did ask the doctor about returning to driving, and they said I failed Dr. Aiken's ad-hoc 'Field of Vision' test, and that I should get an official one done by an Ophthalmologist. I have an appointment for Monday to get this done. I'm also going to ask the doctor on Monday about returning to work. They said I should stay home 4-6 weeks after surgery (its only been 2 weeks) , but I can work from home, so perhaps they will allow this.

So that's the plan, try to get back into my normal life. If the doctors can make me better, that would be great. I am going to move forward with what I have today and hope for the best.

Met with Dr Aiken, still waiting on biopsy results to decide treatment.

Holly, my sister Jean and I saw the oncologist, Dr. Aiken, and the neurosurgeon Dr. Munoz today. We first met with Dr. Aiken. I like him. He gave me a neurological exam and asked about the history of the symptoms I have.  He admitted that he had not had a chance to talk to Dr Munoz about my case, and all the biopsy results were not in yet, but he could talk in general about the course of action in cases like mine. Outside of surgery, there is the following options:

1. Wait and see when, how quickly my symptoms get worse.
   There is no history on this, so we do not know how fast the tumor is progressing. The 'Grade 2' is an indication that is it slow, but exactly what that means differs from person to person.  There is a possibility I could go years before my symptoms get severe enough to warrant the risks of the other options.
2. Radio surgery (see http://en.wikipedia.org/wiki/Radiosurgery)
   This seemed to be the doctors preferred direction, but he was careful to point out more consideration needs to be taken.
   
3. Chemotherapy (see http://en.wikipedia.org/wiki/Chemotherapy)
   The advanced biopsy results are needed to determine if  Chemotherapy is an option. They look for molecular or genetic markers in the biopsy that are know to react positively to Chemotherapy. These tests were ordered with the biopsy, and they expect the results in 2-3 weeks (Week of Dec 13th)

Robin at Dr. Munoz office took the staples (stitches) out. The removal of the staples was very quick and painless. Dr. Munoz then came in and basically gave us a pep talk. He said that he has experienced this with thousands of patients over the years. He warned us about the five stages of grief (which, btw, I'm still kinda in the denial state), and assured us that with a positive attitude I will end up in the acceptance state.

Dr. Munoz assured me that I will not turn into a vegetable or loose mobility or speech. My overall excellent health going into this combined with the advances in neuroscience, and the location of the tumor all make these types of collateral damage rare for cases like mine. I did ask what ill effects are in the realm of possibility, and he could only reply that every case is different. This will be a journey in which I will have to face challenges around this for the rest of my life.

Dr. Munoz then talked a little about what he saw during the surgery. To the eye, one cannot see the boundaries of the tumor. The tumor-affected area 'looks' like normal brain tissue. The tumor has transformed some healthy brain tissue, it did not grow beside the healthy tissue. Because of this, the tumor is not something that can can be safely removed with surgery. Additional surgery is off the table at this point. I am kinda disappointed about this. Surgery is a distinct event, with a clear before and after. The other options listed above are processes that take a long time to develop. I would rather get this over with even if I had to endure another surgery, but it does not look like that is the path we will take.

With that, Dr Munoz will step aside and let Dr Aiken take the lead on my case. It is really nice how there is a pool of experts at Rush University and how they are working together on my case. I feel I am getting the best treatment available in the world. 

So, now we have to wait for the biopsy results, let the doctors recommend the best course of action, and go from there. Thank you to everyone for their words of encouragement and prayers. A special thank you to Holly for taking care and comforting me during this difficult time.