My panties were all in a bunch in my last post because my doctor was giving me a hard time about providing quantitative data on the size of my tumor before and after the 6 week IMRT Radiation and Chemotherapy treatment. After a long talk with my doctor, and talking with my sisters, I was reminded the goal of this treatment was to stop the tumor from growing, not make it smaller. I wrote in this blog before the treatment started that the tumor has already damaged my brain. Even if the treatment totally kills the tumor, the damage is already done. The treatment is to stop any more damage from happening. I knew this, but I guess I got caught up wanting some vindication for being subjected to this treatment.
I still not like the puppy-mill atmosphere at the doctors office, and I do not think they handled my request very well, but changing doctors at this point would involve more stress than it would relieve. I'll come back to this after the 1 year Chemo cycle is complete.
I had a slight fever over the weekend, taking loads of ibuprofen to keep it down. My legs are so sore it feels like I took a 20 mile hike, but in reality have been resting a lot. Maybe I have been resting too much.
Tuesday, April 26, 2011
Wednesday, April 20, 2011
Switching Doctors?
I have had it with my current nuero-oncologist, and am looking for a new one. Since my last appointment when he said the it 'looked smaller to him', I have been pressing them to provide actual measurements, or a percentage 'smaller'. They said that this was the responsibility of the radiologist, and they would ask them. A week later, the nuero-oncologist said that the report came in, and the radiologist reported the same thing...'appears to be smaller'.
I get a copy of every MRI that I take, and they are very detailed pictures of my brain. I can run the viewing software on my PC. This software has tools where one can measure any aspect of the pictures. As an engineer, I thought it was a very strait forward request for the tumor measurements before and after the treatment, and use the difference to calculate percentage change. To make a long story short, they eventually provided some numbers with strange descriptions and basically refused to make any conclusions from them other than what was previously stated. They are basically telling me I should be happy with their qualitative conclusion even though they have the data to make a quantitative measurement. This whole episode made me very upset not only because they were dismissing scientific principals, but the whole time they were very dismissive with my concerns like I was just being a pain in their ass.
On top off all this, the doctor has changed their office location from a very personal office to a general super center where you have to wait in one line, go to a triage center, go to the waiting room where the butts of the people waiting in line are in your face, see the doctor in a tiny room with 5 people, then go back to another line.
Doctors that don't seem to care about my concerns, unfriendly office, following a recipe...I going to see what other options I have.
Other than that, I seem to be still having the good-days, bad-days schedule. A couple of days I feel good, a couple days no so good.
I get a copy of every MRI that I take, and they are very detailed pictures of my brain. I can run the viewing software on my PC. This software has tools where one can measure any aspect of the pictures. As an engineer, I thought it was a very strait forward request for the tumor measurements before and after the treatment, and use the difference to calculate percentage change. To make a long story short, they eventually provided some numbers with strange descriptions and basically refused to make any conclusions from them other than what was previously stated. They are basically telling me I should be happy with their qualitative conclusion even though they have the data to make a quantitative measurement. This whole episode made me very upset not only because they were dismissing scientific principals, but the whole time they were very dismissive with my concerns like I was just being a pain in their ass.
On top off all this, the doctor has changed their office location from a very personal office to a general super center where you have to wait in one line, go to a triage center, go to the waiting room where the butts of the people waiting in line are in your face, see the doctor in a tiny room with 5 people, then go back to another line.
Doctors that don't seem to care about my concerns, unfriendly office, following a recipe...I going to see what other options I have.
Other than that, I seem to be still having the good-days, bad-days schedule. A couple of days I feel good, a couple days no so good.
Saturday, April 16, 2011
Doing OK
I was able to work on Friday, and actually took on a big project at home today, front brakes on the VW. Anthony was a great help working on the car. My appetite is next to nil, Holly keeps pushing food on me.
So the first week went OK. I was a little more tired than normal, and my stomach felt like I ate a box of rat poison. I am 'off' of Chemo for like 28 days now. I will just fine for the next year if this is all I have to put up with every month.
So the first week went OK. I was a little more tired than normal, and my stomach felt like I ate a box of rat poison. I am 'off' of Chemo for like 28 days now. I will just fine for the next year if this is all I have to put up with every month.
Wednesday, April 13, 2011
Three days into High Dose Chemo
I started the 5 days on / 28 days off 300mg Chemo cycle on Sunday night. Monday went great, I was a little foggy, but was able to work all day with little problem. Tuesday I was feeling pretty much the same. Today it hit me. I woke up at 5 am with a screaming headache, took 4 ibuprofen and tried to get back to sleep. I couldn't, and figured that I would feel better keeping busy at work. Headache would not go away. I went home at 11, took a norco and laid down. At 4pm I still have a severe headache and took some Tylenol. No luck. I feel like I got whacked in the head with a 2x4 or have a severe hangover....but just in my head. My stomach feels fine and my body is just a little sore.
Taking the Chemo pills Sunday, Monday, and Tuesday night I was a little anxious. Its hard to take these pills when you know they make you feel miserable. Taking them tonight and tomorrow is going to be really hard.
I wonder how long into the '28 days off' it is going to take for me to feel better. Please leave a comment if you have any experience here. I hope its not 27 days!
Taking the Chemo pills Sunday, Monday, and Tuesday night I was a little anxious. Its hard to take these pills when you know they make you feel miserable. Taking them tonight and tomorrow is going to be really hard.
I wonder how long into the '28 days off' it is going to take for me to feel better. Please leave a comment if you have any experience here. I hope its not 27 days!
Monday, April 11, 2011
13th Wedding Anniversary
Today is Holly and my 13th wedding anniversary.
Holly, thank you so much for your support during this very trying period of our life togather. You have made this ordeal much easier to cope with and have made me feel comfortable and safe. I love you and am looking forward to many more years by your side.
Love,
Ed
Holly, thank you so much for your support during this very trying period of our life togather. You have made this ordeal much easier to cope with and have made me feel comfortable and safe. I love you and am looking forward to many more years by your side.
Love,
Ed
Sunday, April 10, 2011
Feeling good going into 1 year of Chemotherapy
Brain Surgery to get a tumor biopsy, $125,000.00
6 Weeks brain radiation treatment, $60,000.00
1 month Chemo Prescription, $10,000.00
Taking your son to the bating cages, priceless.
Health insurance is up there too.
Being back at work, I have been kinda ignoring my medical bills, I was putting them aside and telling myself I would look at them next weekend. Did you ever notice how next weekend sometimes slips by without you noticing? I had accumulated about twenty envelopes from the hospital and the insurance company. I felt good enough to go through them yesterday. A couple were from a collection agency saying I didn't pay my bills. Recall my sister went through all this with a fine tooth comb and told me exactly what I owed. I paid that amount - what is the dang problem? Digging into it, I found that the hospital did not credit my account for the check I sent. I called the bank, they said the hospital cashed it. Need to call the hospital next week. I still have all the bills for the radiation treatment to go through. On first glance, they have charged me for $5000 in treatments while I was in Florida. Hmmmmmmm.
My point is that I am taking on some additional tasks outside of work, and have been able to get together with friends to shoot the breeze. Lets hope I can keep my energy up when I go back on Chemo this week.
6 Weeks brain radiation treatment, $60,000.00
1 month Chemo Prescription, $10,000.00
Taking your son to the bating cages, priceless.
Health insurance is up there too.
Being back at work, I have been kinda ignoring my medical bills, I was putting them aside and telling myself I would look at them next weekend. Did you ever notice how next weekend sometimes slips by without you noticing? I had accumulated about twenty envelopes from the hospital and the insurance company. I felt good enough to go through them yesterday. A couple were from a collection agency saying I didn't pay my bills. Recall my sister went through all this with a fine tooth comb and told me exactly what I owed. I paid that amount - what is the dang problem? Digging into it, I found that the hospital did not credit my account for the check I sent. I called the bank, they said the hospital cashed it. Need to call the hospital next week. I still have all the bills for the radiation treatment to go through. On first glance, they have charged me for $5000 in treatments while I was in Florida. Hmmmmmmm.
My point is that I am taking on some additional tasks outside of work, and have been able to get together with friends to shoot the breeze. Lets hope I can keep my energy up when I go back on Chemo this week.
Tuesday, April 5, 2011
First follow up after treatment
I went to get my MRI and see the oncologist today. This was the first follow up after the 6 week IMRT and Chemo treatment. It has been about 5 weeks since treatment completed. Its been a long day, I'll keep this short.
They did not have any time between the MRI and the appointment to officially analyze the progress. After looking at the MRI for about 2 minutes, the doctor said "It seems to me the tumor has shrunk". I prodded him for a percentage estimate and he deferred until official analysis by the radiologist...should be done some time next week. If I had a dollar every time I was told that!
While he was reviewing the MRI, his PA was writing out the prescription to continue Chemotherapy. This kind tells me that no matter what they saw, I was going to go back on Chemo. The prescription is for 3x the dose I was getting before, but only 5 days/month. Its Temodar again, 300mg/day for 5 days of the month, the the remainder of the month no Chemo. This will continue for 12 months.
This was pretty much what I expected. I told him about the minor symptoms I have been having, he said these are not serious and not to worry....just keep him up to date about any changes.
I then asked him about driving. He looked at Holly and asked - "what do you think?". WOW! Holly said that she does not see a problem with that. He asked me about my commute to work - its only 10 miles on side streets. He said OK...with two conditions, stay off the expressway and do not drive when tired. I was so excited I kicked him in the face (jk, jk). The liberty go to/from work and to run to the store really made my day.
When we got home I looked at the new MRI and tried to compare it to one from November. It is clear that things have changed, but I think you need to be some sort of doctor to tell if it changed for the better. The tumor is still there but looks a little different - no bigger or smaller to my eyes. I think it is too soon to be tracking the size, I'll be more interested in this aspect a year out. For now I am happy to be back at work and driving around the neighborhood in my Volkswagen station wagon. beep beep. word out.
They did not have any time between the MRI and the appointment to officially analyze the progress. After looking at the MRI for about 2 minutes, the doctor said "It seems to me the tumor has shrunk". I prodded him for a percentage estimate and he deferred until official analysis by the radiologist...should be done some time next week. If I had a dollar every time I was told that!
While he was reviewing the MRI, his PA was writing out the prescription to continue Chemotherapy. This kind tells me that no matter what they saw, I was going to go back on Chemo. The prescription is for 3x the dose I was getting before, but only 5 days/month. Its Temodar again, 300mg/day for 5 days of the month, the the remainder of the month no Chemo. This will continue for 12 months.
This was pretty much what I expected. I told him about the minor symptoms I have been having, he said these are not serious and not to worry....just keep him up to date about any changes.
I then asked him about driving. He looked at Holly and asked - "what do you think?". WOW! Holly said that she does not see a problem with that. He asked me about my commute to work - its only 10 miles on side streets. He said OK...with two conditions, stay off the expressway and do not drive when tired. I was so excited I kicked him in the face (jk, jk). The liberty go to/from work and to run to the store really made my day.
When we got home I looked at the new MRI and tried to compare it to one from November. It is clear that things have changed, but I think you need to be some sort of doctor to tell if it changed for the better. The tumor is still there but looks a little different - no bigger or smaller to my eyes. I think it is too soon to be tracking the size, I'll be more interested in this aspect a year out. For now I am happy to be back at work and driving around the neighborhood in my Volkswagen station wagon. beep beep. word out.
Subscribe to:
Posts (Atom)