Today I had a 3 month MRI to check 'progress'. The doctor said there was 'no change since the previous MRI". In other words (mine)...good news, the tumor has not visibly grown and no new tumors have developed!
I asked the doctor to show me the MRI and point out what features he is looking at. No doctors have offered to do this to date, and I kinda wanted to see him explain what he was looking at. What I thought was the tumor he explained was a fluid-filled void left from the surgery. This left me very confused because I was told in no uncertain terms by the surgeon that he only took a biopsy and resection was not possible without compromising functionality. Then he showed another picture that he explained was the diffuse part of the tumor, and he explained this is where the look for new tumors to form. I could not see what he was talking about and he said that the resolution on the MRI is poor and to get better resolution the magnet on the machine would be too small to fit my head in. I have looked through ALL the images (several hundred) from every MRI I have gotten and there are much better pictures that seem to show where the problem is - but who am I to argue? If you have been following this blog, you know I went into this journey with a general disdain for the medical field. Its not getting any better. I have always felt that doctors will agree with anything you complain about, assign it as a condition, and treat you for it to keep the medical machine running. I wonder where I would be today if I never complained about my dizzy spells.....
Tuesday, June 28, 2011
Friday, June 17, 2011
Still Feeling O.K. on Friday
I did start taking 2mg of the decadron EVERY MORNING. I was not quick to judge on the effect of the decadron on my well being at first, but I have continued to live headache free and have a lot more energy and focus. This is great for getting things done at work and around the house, but sleeping at night is a problem. I started taking 1/2 of an Ambian 12.5mg CR at night to help this. I think I found a balance I can live with.
I have learned to take the doctors' side-effect Rx's as 'guidance' and slowly tweak it, giving each change a couple of days to sink in. Be an engineer when experimenting - only change one thing at a time and check results before trying something else. I hope this post will help others going through a similar situation. Disclaimer - This blog is a description of my personal experience. I am not a doctor or offering any medical advise to others.
Have a nice weekend.
I have learned to take the doctors' side-effect Rx's as 'guidance' and slowly tweak it, giving each change a couple of days to sink in. Be an engineer when experimenting - only change one thing at a time and check results before trying something else. I hope this post will help others going through a similar situation. Disclaimer - This blog is a description of my personal experience. I am not a doctor or offering any medical advise to others.
Have a nice weekend.
Wednesday, June 15, 2011
Best day in Months!
What a contrast. I went from thinking I was having a brain aneurysm yesterday to a symptom-free day today. No headaches, good energy, and was able to focus all day. It was nice to feel normal. Even better it is great to know it is even possible during these times.
Tuesday, June 14, 2011
Man Up!
I had quite an episode on Monday night. I left work early with a massive headache that came on suddenly after lunch. I laid down for 2 hours at home and it was still screaming. I talked to my sister, and she suggested taking 2 Norco (narcotic pain killers). No help at all. My head hurt so much that I could not sleep - I was up all night. About 2-3 am the I started to vomit. Not pretty.
I called my doctor at 8 am and they said to come in, probably need a cat scan to check for anything serious. Holly carted me down there and we saw the doctor and he said, 'I need the cat scan before I can say anything. Go get the scan and WAIT there for further instruction'. I clarified that he wanted me to wait in the imaging center for him....he said, 'oh yea, once the scan is done the radiologist and I will discuss the results and they will tell you what to do'. Well, once the scan was done the technician told me the radiologist was not even in the building. Lets not forget I have a screaming headache and did not sleep the night before. Holly and I head back up to doctors office and I ask at the front desk what is going on. The very nice fellow goes and checks and tells me that the radiologist should have told me that there was nothing wrong and that I could go home, but since I was here, the nurse would come talk to me, please have a seat. We were waiting there for about 10 minutes when the nurse comes out and get the people sitting right next to us - totally ignoring us. Holly and I got up an left. I had enough. The doctor calls me on my cell phone 2 1/2 hours later and tells me they just realized that they never followed up with me about the scan. He continued to tell me the scan did not show any serious issues he was worried about, so there is no need for concern. Lets not forget I have a screaming headache and did not sleep the night before. I say, well great what am I supposed to do about my problem? "Man up and plow through it" he says. "What about my headache?" I ask, "Take some aspirin" he says. I make one last plea - "Is there any other class of medication I can try?". He says to try 2mg/day of the steroid Rx. for the next 3 days.
This was another lesson in what 'Fighting Cancer' means.
I called my doctor at 8 am and they said to come in, probably need a cat scan to check for anything serious. Holly carted me down there and we saw the doctor and he said, 'I need the cat scan before I can say anything. Go get the scan and WAIT there for further instruction'. I clarified that he wanted me to wait in the imaging center for him....he said, 'oh yea, once the scan is done the radiologist and I will discuss the results and they will tell you what to do'. Well, once the scan was done the technician told me the radiologist was not even in the building. Lets not forget I have a screaming headache and did not sleep the night before. Holly and I head back up to doctors office and I ask at the front desk what is going on. The very nice fellow goes and checks and tells me that the radiologist should have told me that there was nothing wrong and that I could go home, but since I was here, the nurse would come talk to me, please have a seat. We were waiting there for about 10 minutes when the nurse comes out and get the people sitting right next to us - totally ignoring us. Holly and I got up an left. I had enough. The doctor calls me on my cell phone 2 1/2 hours later and tells me they just realized that they never followed up with me about the scan. He continued to tell me the scan did not show any serious issues he was worried about, so there is no need for concern. Lets not forget I have a screaming headache and did not sleep the night before. I say, well great what am I supposed to do about my problem? "Man up and plow through it" he says. "What about my headache?" I ask, "Take some aspirin" he says. I make one last plea - "Is there any other class of medication I can try?". He says to try 2mg/day of the steroid Rx. for the next 3 days.
This was another lesson in what 'Fighting Cancer' means.
Saturday, June 11, 2011
Out for the count Thursday and Friday of Chemo Week #3
Its early Saturday morning, The past two days I could not do much other than drag around the house and sleep. I think I have read this is refereed to as "Temodar Daze". Let me try to explain my state of mind and body during the late days of the 5/23 Chemo cycle.
I have often said that I have an ongoing mild headache, the way my head feels on Temodar Daze adds the following side effects:
The steroid I tried this cycle did have some effect on energy, but it is not worth it to me. It gives me stomach cramps. I have been trying to mitigate these cramps with small, frequent, healthy meals. Eating a bacon cheeseburger off the Weber would probably sit in my gut like a rock for a week. Fruit, granola bars, fruit, and a ham sandwich get me through the day. Then I eat a light portion of whatever Holly cooks up for my din din.
One more note. The anxiety I get taking 4th and 5th days of the Temodar is unbelievable. Sitting there, feeling like roadkill, and having to take another dose which will make me feel even worse tomorrow. This week I tried some relaxation techniques (Pink Floyd and Deep Breathing Exercises) for an hour before taking the dose. This did help bring the anxiety down and I was able to fall asleep faster.
Lastly, one emotional note. During these Temodar Daze I am laying around the house looking very sick. It really bothers me having the kids see me like this. I think it scares them because it seems things are getting worse. I have tried to explain to them that this medicine has these nasty side effects, but should make me better in the long run. Unfortunately, words do not always cover up reality.
I have often said that I have an ongoing mild headache, the way my head feels on Temodar Daze adds the following side effects:
- A slight dizziness:
I am usually pretty sure on my feet, but in the Daze I often have the sensation I am moving. No ladders for sure. - Sluggish thought / Loss of concentration:
This is mostly what keeps me home from work the last two days of the cycle. I am usually a very intense person when it comes to proposing solutions to any problem presented to me. In the Daze, I can walk around a talk, but my head is pretty much 'blank' of any ideas. - My head kinda feels like it is filled with jello:
This is more of a pain issue that occurs when I move around faster than a turtle. I know it sounds weird, but it feels like my brain is 'floating' in my head. This gets worse as the day goes on, and towards the end of the day I am stuck in bed.
The steroid I tried this cycle did have some effect on energy, but it is not worth it to me. It gives me stomach cramps. I have been trying to mitigate these cramps with small, frequent, healthy meals. Eating a bacon cheeseburger off the Weber would probably sit in my gut like a rock for a week. Fruit, granola bars, fruit, and a ham sandwich get me through the day. Then I eat a light portion of whatever Holly cooks up for my din din.
One more note. The anxiety I get taking 4th and 5th days of the Temodar is unbelievable. Sitting there, feeling like roadkill, and having to take another dose which will make me feel even worse tomorrow. This week I tried some relaxation techniques (Pink Floyd and Deep Breathing Exercises) for an hour before taking the dose. This did help bring the anxiety down and I was able to fall asleep faster.
Lastly, one emotional note. During these Temodar Daze I am laying around the house looking very sick. It really bothers me having the kids see me like this. I think it scares them because it seems things are getting worse. I have tried to explain to them that this medicine has these nasty side effects, but should make me better in the long run. Unfortunately, words do not always cover up reality.
Wednesday, June 8, 2011
Chemo week #3
My oncologist suggest a low dose (4mg/day) of steroids to help with my exhaustion and headaches during the week of chemo. My previous experience with steroids was not pleasant. The dose was much higher and caused extreme anxiety, I was constantly agitated and could not sleep.
I decided to try the steroids this cycle and take an Ambian CR (Sleeping Pill) at night to help the sleep in hopes my quality of life would rise during this week.
I am proud I tried a tweak to my routine, but it is pretty much a wash. I still have a constant headache, have a little more energy, but the anxiety and agitation is too much. No help having more energy if it get PMS with it.
I'm about 4 minutes away from the Temodar dose tonight. This is the worst feeling having those pills in your hand, knowing you have to take them, and how miserable I will be tomorrow. I'll try post the next time I get out of bed.
I decided to try the steroids this cycle and take an Ambian CR (Sleeping Pill) at night to help the sleep in hopes my quality of life would rise during this week.
I am proud I tried a tweak to my routine, but it is pretty much a wash. I still have a constant headache, have a little more energy, but the anxiety and agitation is too much. No help having more energy if it get PMS with it.
I'm about 4 minutes away from the Temodar dose tonight. This is the worst feeling having those pills in your hand, knowing you have to take them, and how miserable I will be tomorrow. I'll try post the next time I get out of bed.
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