We got back from FLA today. Very nice time, great food, better weather than Chicago.
Holly and I went to pick up the Chemo pills today, and we kinda got screwed on the copay. The prescription is for 150mg/day, but the pills come in 140mg and 5mg, so they split the prescription into a 140 1x/day and a 5mg 2x/day. Well, that's all fine and dandy until they charged me two copays at $50 each. I cant complain too much, the insurance company has picked up a lot, but I need to see if there is a way around this if I end up on this for the next several months. There is also a problem with the Bactrim prescription (anti-nausea), the insurance company will only allow 10 pills per month, but the prescription is for one every day. The doctor sent a letter of necessity to the insurance company, I need to follow up on this.
The increased Keppra dose has not helped the cognitive seizures. While in FLA, we went out to eat and I had a doosie. I was feeling woozie and had to excuse myself and go outside. I was out there for 5 minutes or so with my head resting on a railing when I looked up and forgot where I was. It only took a couple of seconds to figure out where I was, but OMG, that is a weird feeling. Holly came out and got me about 5 minutes later and I was able to have dinner without any more problems.
That was the only major problem I had last week. Day to day, I just have headaches and exhaustion, but I am able to get around and seem like a normal person. I think the only thing that shows is when I have a very short, very painful headache that Holly and I have been calling 'zingers'. It feels like a fishhook pulling something in my head behind my right eye for 1-2 seconds. This happens 2-3 times a day, and when it does, I wince in pain. My son has seen this happen and becomes very concerned. I'm sure people have seen this in public I just think I am freak.
The radiation appointments are late in the day for now. We will get an earlier slot once one opens up. I'll let you know how it goes...
Tuesday, January 18, 2011
Saturday, January 8, 2011
Radiation therapy schedule set, looks like I'll be going back on STD
After a nice weekend last week, this week was pretty hard to deal with. I still cannot sleep well, even after the doctor changed my prescription from Ambien CR to Fluvoxamine and Lorazepam. One of the things that gets me confused is that the doctors use easy to understand name brands for drugs when you talk to them, then you pick up the prescriptions from the pharmacy and you get bottles with these crazy names that a scientist made up. There should be a law on drug names such that a) they have no more than three syllables and b) do contain the letter 'x'. Anyway, the new prescription is not working either. I feel sick and like I need a lot more rest, but my body will stay asleep for very long. The doctor also doubled my anti-seizure medication (Keppra) to 1000mg 2x/day. The radiation oncologist had suggested that my cognitive lapses were actually small seizures, and were hoping to minimize these with the higher dose.
All of this dealing with prescriptions is another source of anxiety for me. I never liked taking drugs for anything, and usually just let my body fight off any sickness naturally. Out of all the prescriptions I have taken through this ordeal, the only one I can tell is working is the Norco pain killer. The rest make me feel like I am a pawn in the drug industry.
I also had a conversation with my boss about working from home during the treatment. He was more concerned that I have enough rest to recover and suggested that I go back on Short Term Disability (STD). So I will take at least a couple weeks off and see how I feel, then go from there. I have mentioned it before, but I will say it again. I am blessed to work for a company that is so considerate of my situation, and have coworkers who care about you and are willing to help out. Thank you to everyone there.
Next week we are going to FLA, and the treatments start when I get back.
All of this dealing with prescriptions is another source of anxiety for me. I never liked taking drugs for anything, and usually just let my body fight off any sickness naturally. Out of all the prescriptions I have taken through this ordeal, the only one I can tell is working is the Norco pain killer. The rest make me feel like I am a pawn in the drug industry.
I also had a conversation with my boss about working from home during the treatment. He was more concerned that I have enough rest to recover and suggested that I go back on Short Term Disability (STD). So I will take at least a couple weeks off and see how I feel, then go from there. I have mentioned it before, but I will say it again. I am blessed to work for a company that is so considerate of my situation, and have coworkers who care about you and are willing to help out. Thank you to everyone there.
Next week we are going to FLA, and the treatments start when I get back.
Wednesday, January 5, 2011
Radiation IRMT Planning + Drug Cartel
Yesterday, Holly, Jean and I had a busy afternoon. The doctors had to start planning the radiation treatment by putting me in a IMRT simulator and an MRI. The simulator actually looks like a cat scan machine, but they made a molded plastic face mask to attach/hold my head in the exact position. The mask starts out as a piece of hard plastic mesh with two hooks. The warm up the plastic to make it stretchable and push it over my face till the hooks attach to the machine. Wait a couple minutes and the plastic cools to a hard shell. This mask then has marks put on it to line up my head with the machine. Its pretty freaky looking, I'll have to see If I can get a picture the next time I am there.
I also had an MRI to assist in the radiation planning. BTW, I took this home and tried to compare the images to images taken back in November. I can see where the biopsy was removed, and it did not look like the tumor grew much in that time period (under 2 months).
We also had a visit with Dr. Aikens about the Chemo. We walked out of there with 100 side effects to watch out for and a stack of prescriptions. Some of the prescriptions are to counter the effects of the others. Once I get it all strait (with my sisters help), I'll post a list of these so other patients that might be reading this can compare notes.
The radiation/chemo starts on January 19th. I still to to talk to my boss at work about possibly taking time off. The doctors are saying this is up to me, and if I choose to that it will be difficult. It is also difficult for me to sit around and not work. Hopefully I can work out some 'work from home' deal during the radiation therapy period.
I also had an MRI to assist in the radiation planning. BTW, I took this home and tried to compare the images to images taken back in November. I can see where the biopsy was removed, and it did not look like the tumor grew much in that time period (under 2 months).
We also had a visit with Dr. Aikens about the Chemo. We walked out of there with 100 side effects to watch out for and a stack of prescriptions. Some of the prescriptions are to counter the effects of the others. Once I get it all strait (with my sisters help), I'll post a list of these so other patients that might be reading this can compare notes.
The radiation/chemo starts on January 19th. I still to to talk to my boss at work about possibly taking time off. The doctors are saying this is up to me, and if I choose to that it will be difficult. It is also difficult for me to sit around and not work. Hopefully I can work out some 'work from home' deal during the radiation therapy period.
Sunday, January 2, 2011
Calm in the storm
I must say that the past two months have been treacherous. Trying to cope with the diagnosis, doctor visits, the holidays, waiting for test results, going back to work, and worst of all, the daily headaches and exhaustion this has brought me. I have not been able to sleep well. When I wake early in the morning, I feel like I have been drinking all night...even though I have had not a drop of alcohol. I can't stand laying there in bed feeling like crap-ola, so I get up and struggle through the day the best I can. Before all this I fully enjoyed waking up early, going to work (and getting paid for doing what I love to do), spending time with the family, sleeping, repeat. Everyday was like a walk in the park on a sunny day. Recently the weather has changed to freezing drizzle blowing in my face while I push through the day. The prospect of having to face this challenge every day for the rest of my life is daunting.
But the last two days have been different. I woke up with a clear head, a sunny day. This on its own is insignificant, but the hope that another sunny day is around the corner is priceless.
But the last two days have been different. I woke up with a clear head, a sunny day. This on its own is insignificant, but the hope that another sunny day is around the corner is priceless.
Thursday, December 30, 2010
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. 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.
Tuesday, December 28, 2010
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.
- 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.
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?
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?
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