The first week of whole brain radiation is over and I'm starting on my second week. Since I "breezed" through chemo, I was hoping that radiation would be easy as well. Sadly, it is much more difficult than I had anticipated. The nausea is what plagues me the most. It's fairly "low-grade" - if it can be measured by degrees. But to me, any kind of nausea is semi debilitating. I somehow find it hard to function at a normal level when my body is constantly hinting that vomit lies just below a shallow surface. The doctor was also surprised by this symptom since he claims he's giving me a low dose and most patients don't have the problem at this level. Lucky me! Medication has mostly controlled the issue.
Fatigue is the other problem. It's not been too bad except on occasion - but when it hits, it hits hard. I actually fell asleep while on the phone with a friend! (I'm talking sound asleep with dreams and everything!) A bit embarrassing to be wakened by my phone (I had it on speaker) asking me if I was still there. Thankfully my friend was very understanding about it. But I wouldn't recommend it as a friendship builder.
Six down, nine to go...
Monday, March 31, 2008
Tuesday, March 25, 2008
Do NOT try this at home!
Yesterday was my first day to get the whole brain radiation. They had warned me that it would be a long day because of measurements, xrays, and basically setting it all up. And they weren't kidding! First on the agenda was making me a "mask". They take a porous material - you can see the many holes - and wet it down which makes it pliable. Then it is wrapped over your face giving you the feeling of being suffocated in spite of knowing there are holes through which you can breathe. Just when you feel it is really too tight, it is pushed down further on your face and bolted onto the table. This is not for the claustrophobic. I got to stay in this position for quite a while as they made marks, adjustments, raised and lowered the table, twisted and moved my face by fractions until everything was just right. Except that it wasn't so we repeated the process several times. The very kind technician gave me a break from the dreadful mask now and then but I always had to return to it.
We found out later that my radiation oncologist is a perfectionist and wanted to get things exactly right. Now if there's ever a time for perfectionism, I say this is it. As far as I'm concerned, he could have taken the whole day if the goal was precision. I consider my brain one of my favorite body parts and one which I'd like to be able to use in the future to it's fullest capacity. (Oops...this leaves me wide open for editorial comment and unkind jokes.)
I was given my first radiation treatment after all was set properly - the actual radiation only lasts for a few minutes - and was finally free to go. I felt fine until a few hours later when queasiness and a headache developed, eventually reaching the throbbing level. I took an Aleve but was still hurting until my friends prayed for me. Immediately the pain decreased and after more prayer, disappeared altogether! Today's treatment was much quicker and there's been no headache. Yeah! The doctor offered me a steroid drug to combat the brain swelling but assured me I wouldn't like the side effects so if I could tough out the headaches, I'd be better off. However, he gave me a prescription just in case.
The countdown begins. Only 13 more treatments to go!
We found out later that my radiation oncologist is a perfectionist and wanted to get things exactly right. Now if there's ever a time for perfectionism, I say this is it. As far as I'm concerned, he could have taken the whole day if the goal was precision. I consider my brain one of my favorite body parts and one which I'd like to be able to use in the future to it's fullest capacity. (Oops...this leaves me wide open for editorial comment and unkind jokes.)
I was given my first radiation treatment after all was set properly - the actual radiation only lasts for a few minutes - and was finally free to go. I felt fine until a few hours later when queasiness and a headache developed, eventually reaching the throbbing level. I took an Aleve but was still hurting until my friends prayed for me. Immediately the pain decreased and after more prayer, disappeared altogether! Today's treatment was much quicker and there's been no headache. Yeah! The doctor offered me a steroid drug to combat the brain swelling but assured me I wouldn't like the side effects so if I could tough out the headaches, I'd be better off. However, he gave me a prescription just in case.
The countdown begins. Only 13 more treatments to go!
Saturday, March 15, 2008
Fried brains, anyone?
I met with a radiation oncologist 2 days ago to see what could be done for the 4 tumors they found in my brain. My hope was to be able to have them individually "zapped", thereby sparing the rest of my brain from unnecessary radiation exposure. This is what made sense to my uneducated mind. What I learned is that the process to do pinpoint radiation is somewhat "barbaric" (a word the doctor himself used to describe it). A neurosurgeon drills holes into your head in order for a halo-type structure to be attached to it. The surgery is so exact that there can be NO movement. The more tumors you have, the longer the time that you will be immobilized. Since there are already 4 known tumors in my brain, the doctor suggested that it is likely that they could find more when a better, precise MRI would be done a day or two before treatment. That would mean possible immobilization all day long. But the main concern is not immobilization but effectiveness of treatment.
The doctor was quite clear that in his opinion the best course of treatment in my particular case would be whole brain radiation. It's when they give you a small dose of radiation over a period of time. In my case, 15 doses spread over 3 weeks. The side effects are hair loss - darn, it was just growing back - skin dryness, nausea, fatigue and cognitive issues such as memory loss and difficulty concentrating. I hate the sound of all this but it seems to be the lesser of evils. The doctor stated that I was fortunate so far in that I don't have any symptoms - headaches, dizziness, imbalance, etc - but said if tumors developed in my speech center, I could wake up one day and not be able to speak. Currently, the largest tumor is in my coordination center.
This has been a difficult decision to come to. I explained to the doctor that I didn't want to have radiation, then my life sucks, and I die anyway. He assured me that although he cannot make any guarantees, he did not believe this would decrease my quality of life but he did believe it could extend it and mentioned a couple of cases who are still alive today many years after treatment.
Because I've been taking an oral chemo drug which enhances the effects of radiation, I was instructed to stop taking it and then wait a week to allow the drug to get out of my system. My treatments are scheduled to start Monday, March 24.
Our friends from church, Jeff & Lecia, took me to a healing /prayer/worship service this week which was very uplifting. I love being prayed for and continue to pray in this direction.
The doctor was quite clear that in his opinion the best course of treatment in my particular case would be whole brain radiation. It's when they give you a small dose of radiation over a period of time. In my case, 15 doses spread over 3 weeks. The side effects are hair loss - darn, it was just growing back - skin dryness, nausea, fatigue and cognitive issues such as memory loss and difficulty concentrating. I hate the sound of all this but it seems to be the lesser of evils. The doctor stated that I was fortunate so far in that I don't have any symptoms - headaches, dizziness, imbalance, etc - but said if tumors developed in my speech center, I could wake up one day and not be able to speak. Currently, the largest tumor is in my coordination center.
This has been a difficult decision to come to. I explained to the doctor that I didn't want to have radiation, then my life sucks, and I die anyway. He assured me that although he cannot make any guarantees, he did not believe this would decrease my quality of life but he did believe it could extend it and mentioned a couple of cases who are still alive today many years after treatment.
Because I've been taking an oral chemo drug which enhances the effects of radiation, I was instructed to stop taking it and then wait a week to allow the drug to get out of my system. My treatments are scheduled to start Monday, March 24.
Our friends from church, Jeff & Lecia, took me to a healing /prayer/worship service this week which was very uplifting. I love being prayed for and continue to pray in this direction.
Thursday, March 13, 2008
Trip to North Carolina
Last week I was in North Carolina where I went to see a research scientist who specializes in cancer alternative treatments. Ultimately, I'm not sure if I will implement his suggestions but at least I came away with more options to chose from.
The trip turned out to be lots of fun. My dear friend, Liiza bought an airline ticket at the last minute in order to accompany me so I wouldn't be alone. I'm not shy about traveling by myself but it was much more fun to have my buddy with me. She also was my navigator while we drove around unknown streets and highways. I'd still be wandering around lost somewhere if she hadn't been giving me directions.
On one of the days I didn't go into the clinic, we toured the Biltmore estate - a massive castle like mansion built by the Vanderbilt family in the early 1900's. Their wealth in today's money is estimated at 93 billion and you can see how some of that was spent when you take the tour. It's a mind-boggling and fascinating structure. We also got in on freezing cold weather - waking up to heavy snowfall a couple of days.
Through some interesting circumstances, I was invited to stay with a lovely Christian family for my last 3 days after Liiza returned home. Some friends invited me to visit their mostly black church where we had a rockin' good time. That evening I enjoyed a tiny home church service. Everywhere we/I went we met friendly, lovely people who opened their arms to welcome us. So if you ever have a chance to visit Asheville, NC....I'd highly recommend it!
The trip turned out to be lots of fun. My dear friend, Liiza bought an airline ticket at the last minute in order to accompany me so I wouldn't be alone. I'm not shy about traveling by myself but it was much more fun to have my buddy with me. She also was my navigator while we drove around unknown streets and highways. I'd still be wandering around lost somewhere if she hadn't been giving me directions.
On one of the days I didn't go into the clinic, we toured the Biltmore estate - a massive castle like mansion built by the Vanderbilt family in the early 1900's. Their wealth in today's money is estimated at 93 billion and you can see how some of that was spent when you take the tour. It's a mind-boggling and fascinating structure. We also got in on freezing cold weather - waking up to heavy snowfall a couple of days.
Through some interesting circumstances, I was invited to stay with a lovely Christian family for my last 3 days after Liiza returned home. Some friends invited me to visit their mostly black church where we had a rockin' good time. That evening I enjoyed a tiny home church service. Everywhere we/I went we met friendly, lovely people who opened their arms to welcome us. So if you ever have a chance to visit Asheville, NC....I'd highly recommend it!
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