Last dose of Chemotherapy was last night. You would think this is a joyous moment, but it is a mixed bag of emotions. I am very happy that I won't have to go through this monthly cycle of being sick and tired all the time. I am looking forward to exercising more, biking, and hiking. All sorts of inging.
The is a dark side to this end. I kinda loose the concept that I am doing something about my disease. Now we are in a 'wait-n-see' mode. Did the radiation and chemotherapy work? I know that during treatment the tumor did not grow. Was it the treatment that was inhibiting growth? All these questions are hanging over my head as I plow on with my life. Only time will tell.
Doctor Double Talk:
In the middle of the last chemo cycle, I get an email from the oncologist nurse saying that the oncologist did not agree with the radiologist on the last MRI report. Whoh, hold the press. Do you know how many times the doctor said to me that the MRI looks 'fine to be, but I'll defer to the radiologist for the expert opinion'. Well, this is apparently only true if the oncologist agrees with the radiologist. The radiologist said that there is evidence that the tumor is re-growing. The oncologist asked the 'tumor board' to review the MRI's and they agreed all was stable. I'm glad the panel of experts took time to review my case, but I do not appreciate the he-said she-said drama, especially during chemo week.
Friday, February 24, 2012
Saturday, February 18, 2012
"Welcome to the Living"
The oncologist said a couple of things yesterday, took a day to set in.
He regularly comments on how I am an electrical engineer, or enginerd as I like to call myself. Yesterday, he said 'welcome to the living' to me after saying that I am fine despite all my health problems. At the time, I laughed it off, and the remaining grey matter chewed on it for a day. This one statement has changed my outlook, somewhat.
My daily effort at work involves identifying problems, breaking them down and solving the individual pieces to come up with a solution. It is a very methodical, scientific process that usually gets me the solution in short order. Electronic systems behave in a very well defined manner.
The Doctor does not have it so easy. Every person is different, and the nobody understands all the rules the body uses to operate. Doctors can only help you so much. All the problems cannot be solved.
I thought that if I explained my problems accurately, he would be able to either explain why it can't be fixed, or TRY to fix it. I guess that's how it is with living systems. Kinda makes sense now, after 14 months of this.
I'll guess I'll have to man up and stop complaining soo much.
He regularly comments on how I am an electrical engineer, or enginerd as I like to call myself. Yesterday, he said 'welcome to the living' to me after saying that I am fine despite all my health problems. At the time, I laughed it off, and the remaining grey matter chewed on it for a day. This one statement has changed my outlook, somewhat.
My daily effort at work involves identifying problems, breaking them down and solving the individual pieces to come up with a solution. It is a very methodical, scientific process that usually gets me the solution in short order. Electronic systems behave in a very well defined manner.
The Doctor does not have it so easy. Every person is different, and the nobody understands all the rules the body uses to operate. Doctors can only help you so much. All the problems cannot be solved.
I thought that if I explained my problems accurately, he would be able to either explain why it can't be fixed, or TRY to fix it. I guess that's how it is with living systems. Kinda makes sense now, after 14 months of this.
I'll guess I'll have to man up and stop complaining soo much.
Friday, February 17, 2012
MRI Clean
Today's MRI was clean. No change. Seeing that I really did not recover from the last cycle, I am apprehensive about starting the last cycle on Sunday. I told my daughter this, and she says "Nobody wants to take Chemo!" Like duh, dad. Oh well, grin and bear it. Don't have to go back to the doctor for 3 months for checkup and MRI. I really hope I start feeling better.
Wednesday, February 15, 2012
February Oncologist Appointment
Went to the oncologist today to tell him about all the problems I had last cycle and get my last chemo rx. As typical, I was feeling fine, all my symptoms had passed. I passed his barrage of neurological tests, but he was concerned enough that he ordered an MRI.
I asked about blood tests to check for the level of anti-seizure medication. He said that for the Keppra I am taking, the level in the blood does not correlate to its effectiveness. He continued that he did not think that the problems I was having were seizure related. He said seizures typically has a distinct start, last a short time, and have a distinct end. All my problems kinda came and went over a week's time.
I also asked about his initial prediction that I would be fine for a while, then my health would 'turn the corner'. I told him that I was concerned that these problems I have seen over the past month are indications that I am starting to make the turn. Point blank question - Are these type of problems indicative of turning the corner? The Doctor then turns into a politician and says that the 'turning the corner' speech from a year ago should not be taken literally, and that he was talking about 'years' from now he would be worried about this.
I would have felt fine if it was left at that, but then he said we should do the MRI to make sure. If your not worried, why would you order the MRI? I think this is another case that when the patient complains, its the doctors code to do something...so I am not worried.
I asked about blood tests to check for the level of anti-seizure medication. He said that for the Keppra I am taking, the level in the blood does not correlate to its effectiveness. He continued that he did not think that the problems I was having were seizure related. He said seizures typically has a distinct start, last a short time, and have a distinct end. All my problems kinda came and went over a week's time.
I also asked about his initial prediction that I would be fine for a while, then my health would 'turn the corner'. I told him that I was concerned that these problems I have seen over the past month are indications that I am starting to make the turn. Point blank question - Are these type of problems indicative of turning the corner? The Doctor then turns into a politician and says that the 'turning the corner' speech from a year ago should not be taken literally, and that he was talking about 'years' from now he would be worried about this.
I would have felt fine if it was left at that, but then he said we should do the MRI to make sure. If your not worried, why would you order the MRI? I think this is another case that when the patient complains, its the doctors code to do something...so I am not worried.
Sunday, February 12, 2012
More strange problems, another issue with doctors office
Shortly after the week-long eye pain episode last week, I had another rough week. Recall that my initial symptoms included proprioception seizures, where I would not recognize my own arm as being mine. Friday night after the eye thing, in the middle of the night, I woke up and had a similar sensation with my left arm and leg. I would move them to convince myself my limbs were still there. I though I might have been dreaming, so I got up and moved to the couch. Same deal. It was not as intense as my initial seizures, but was very disturbing. The next morning, I got up and my left arm was in major pain. It was like carpel tunnel, it did not hurt until I tried to move. Simple tasks like putting on a belt resulted in cringing pain. I even howled in pain a couple of times. I would have to hold my arm against my body while walking. This last Friday I woke up and the problem was gone. It came on overnight, lasted a week, and went away overnight.
Adding to this, the psychological fear that I might be 'turning the corner' or this problem might not go away is hard to deal with. Its hard to not think about it every time the pain shoot up my arm. Shortly after diagnosis, my doctor told me that I would lead a relatively normal life for a few years, then a string of strange health issues will arise over a few months (turning the corner), then the tumor will take control. So every time something strange happens, I worry. It is very easy to blame any health problem on a brain tumor.
My sister implored me to call the doctor and tell them what is going on, just based on the eye problems. I called the nurse and told her what was happening. She talked to the doctor, and the doctor said he wants to examine me before recommending any action. I told the nurse it could wait till the appointment scheduled for the following Tuesday. When I looked at the appointment schedule from my last visit, I noticed the date was for next week! I called the scheduling desk and told them that I am supposed to see the doctor every 4 weeks to maintain the 5/28 Chemotherapy schedule, and they gave me an appointment 5 weeks out from my last appointment. The ignorant person they have answering the phones at the cancer center says the doctor instructed an appointment 'around' four weeks, and the doctor was booked on the 4 week mark. Rather than solving the problem, the scheduler defended their actions. It took every thread in my shirt not to explode at her. I calmly asked if I could get an appointment the following day and she says sure. They teach my kids in school to be 'problem solvers', apparently this one missed that day.
So my next oncologist appointment is Wednesday rather than Tuesday. I get to tell him about all my trials and tribulations, and get my LAST Chemotherapy Rx.
Adding to this, the psychological fear that I might be 'turning the corner' or this problem might not go away is hard to deal with. Its hard to not think about it every time the pain shoot up my arm. Shortly after diagnosis, my doctor told me that I would lead a relatively normal life for a few years, then a string of strange health issues will arise over a few months (turning the corner), then the tumor will take control. So every time something strange happens, I worry. It is very easy to blame any health problem on a brain tumor.
My sister implored me to call the doctor and tell them what is going on, just based on the eye problems. I called the nurse and told her what was happening. She talked to the doctor, and the doctor said he wants to examine me before recommending any action. I told the nurse it could wait till the appointment scheduled for the following Tuesday. When I looked at the appointment schedule from my last visit, I noticed the date was for next week! I called the scheduling desk and told them that I am supposed to see the doctor every 4 weeks to maintain the 5/28 Chemotherapy schedule, and they gave me an appointment 5 weeks out from my last appointment. The ignorant person they have answering the phones at the cancer center says the doctor instructed an appointment 'around' four weeks, and the doctor was booked on the 4 week mark. Rather than solving the problem, the scheduler defended their actions. It took every thread in my shirt not to explode at her. I calmly asked if I could get an appointment the following day and she says sure. They teach my kids in school to be 'problem solvers', apparently this one missed that day.
So my next oncologist appointment is Wednesday rather than Tuesday. I get to tell him about all my trials and tribulations, and get my LAST Chemotherapy Rx.
Saturday, February 4, 2012
Feeling better
Eye pain went away. I took Friday off of work. A couple of Norcos and a good night sleep did the trick.
Friday, February 3, 2012
Eye Pain becoming persistent
I finished the 11th round of Chemo last week. The cycle went well, I have got the routine to minimize the side effects down to science. The last think I added was eating cardboard cereal. Actually it was imitation cardboard cereal, a mini-wheat cereal from Trader Joe's. That helped a lot with the poop shooter.
The problem started after the cycle was done. I usually feel better by Sunday night, but not this time. All week I have had this pain in and behind my left eye. It kinda feels like the muscles are constantly fighting to keep the eye strait. This is accompanied by a strange sensation that what I am seeing in that eye is not clear. I can see fine, but I feel something is just not right. Occasionally, I will get a real sharp pain like a cramp in my eye that only lasts a second. I have had pain in my eye like this in the past year, but it would come and go in a couple hours. As of now, this has been constant for 6 days now. This leads to severe headaches, the Tramadol pain medication does not help. The constant headaches lead to exhaustion.
This has got me really, really worried. The doctor warned of problems like this because the tumor is in the part of my brain that controls and interprets sight in the left eye. I will not make a good pirate, I get seasick very easy.
The problem started after the cycle was done. I usually feel better by Sunday night, but not this time. All week I have had this pain in and behind my left eye. It kinda feels like the muscles are constantly fighting to keep the eye strait. This is accompanied by a strange sensation that what I am seeing in that eye is not clear. I can see fine, but I feel something is just not right. Occasionally, I will get a real sharp pain like a cramp in my eye that only lasts a second. I have had pain in my eye like this in the past year, but it would come and go in a couple hours. As of now, this has been constant for 6 days now. This leads to severe headaches, the Tramadol pain medication does not help. The constant headaches lead to exhaustion.
This has got me really, really worried. The doctor warned of problems like this because the tumor is in the part of my brain that controls and interprets sight in the left eye. I will not make a good pirate, I get seasick very easy.
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