Appointment with the oncologist went well yesterday. MRI was "stable, possibly better". He took all my self-imposed medication changes in stride. I thought he would be upset and start being (even) shorter with me, but he was like, 'great - i'm glad your feeling better'.
I also asked him about going to a local hospital for the checkups after the chemo is done. He said their machines are much nicer, and local hospitals cannot do the advanced imaging they use. Hummm, he has a point - maybe it is worth the hour drive and $5 parking. Which is better; people that seem like they care, or people that know what their doing?
Wednesday, December 21, 2011
Monday, December 19, 2011
Headache Relief - FINALLY
I went to see my general practitioner two weeks ago for a couple of things, thank him for his quick Rx for a MRI, and ask him for advice on the continuous headache and where I should go for follow ups after the Chemo is done. For the follow ups, he said I can go anywhere - even the clinic he works at has radiologists and oncologists that can recognize when things are going wrong. I am leaning this way as I am not at all comfortable at Rush University, and I think a smaller organization might actually give me more attention because I am an interesting case. I don't think I would trust them with surgery, but I think they would follow my progress closer than the Rush machine. But I digress...
The BIG news is about the headaches. Dr. Dreyers first question was if I have seen a pain specialist. Well, no I haven't - I did not even know there was such a specialty (in the medical field anyway). He says, well, I can give you an Rx for something to try now, and If that does not work you can make an appointment with Dr Painnomore. He wrote me a Rx for 50mg of Tramadol....
It not like the the headaches hurt so bad I couldn't operate, but it did hurt ALL THE TIME. From the moment I woke up till I fell asleep. I started taking the Tramadol, one pill twice a day, and poof - no more headaches.
I had no idea how much the headaches were affecting my life. I was constantly exhausted, fed up, hog tied, tired, cranky, gloomy, disenchanted, well, you get the idea. The oncologist had me on Provigil to help with the exhaustion, and a SSRI 'just because'. Seems all this was being caused by the constant headaches.
I have felt like a normal person the last two weeks. I have energy to do projects around the house, and started tinkering with my hobbies again. Being sick is quite a recursive problem for me. When I am sick, I don't do the things I love, when I don't do the things I love, I get sick, repeat. A couple months ago I started tapering off a lot of the medications I was on. No more SSRI, Provigil, or Ativan. I knew these were not really helping me. I'm only taking the Keppra (anti-seizure), Tramadol, and an occasional Ambian.
I have a follow up MRI tomorrow, and the next round of chemo starts Christmas night.
Have a Merry Christmas and Happy new year.
The BIG news is about the headaches. Dr. Dreyers first question was if I have seen a pain specialist. Well, no I haven't - I did not even know there was such a specialty (in the medical field anyway). He says, well, I can give you an Rx for something to try now, and If that does not work you can make an appointment with Dr Painnomore. He wrote me a Rx for 50mg of Tramadol....
It not like the the headaches hurt so bad I couldn't operate, but it did hurt ALL THE TIME. From the moment I woke up till I fell asleep. I started taking the Tramadol, one pill twice a day, and poof - no more headaches.
I had no idea how much the headaches were affecting my life. I was constantly exhausted, fed up, hog tied, tired, cranky, gloomy, disenchanted, well, you get the idea. The oncologist had me on Provigil to help with the exhaustion, and a SSRI 'just because'. Seems all this was being caused by the constant headaches.
I have felt like a normal person the last two weeks. I have energy to do projects around the house, and started tinkering with my hobbies again. Being sick is quite a recursive problem for me. When I am sick, I don't do the things I love, when I don't do the things I love, I get sick, repeat. A couple months ago I started tapering off a lot of the medications I was on. No more SSRI, Provigil, or Ativan. I knew these were not really helping me. I'm only taking the Keppra (anti-seizure), Tramadol, and an occasional Ambian.
I have a follow up MRI tomorrow, and the next round of chemo starts Christmas night.
Have a Merry Christmas and Happy new year.
Saturday, December 10, 2011
3 Months of Chemo to go!
I finished the 9th cycle of Chemo, nothing unexpected happened. It was kind of a drag that it started the Sunday after Thanksgiving. I have to be real careful about what I eat, and what is in my system when Chemo starts. Eating small light meals does not mesh very well with Thanksgiving dinners. I had to explain this to everyone such that they don't ask a million times whats wrong and why am I not eating. What I did eat was good, and I am thankful for that.
Moving backwards, my last oncologist visit was interesting. The doctor was not there, and we just met with the nurse. The nurse is much less intimidating, seems to listen better, and is a bit more compassionate. I came out swinging about my headaches, voicing my concern how their 'man up' attitude is not helpful. The doctor has this peculiar way of dismissing our concerns while maintaining his aura of duty. The nurse fielded this by putting my situation in context. She said that some brain tumor patients experience no pain at all, while others suffer debilitating headaches. In this spectrum, I am just outside the level where over the counter medications help, and not quite at the level that would warrant narcotics. More importantly, she continued, be thankful that I am not worse off as many of their patients are. She said that I am doing very well considering my condition. She reflected back and said that the last couple MRI's were stable, and she expects (with explicit warnings about predictions) that the MRI in December will be stable too sighting my continued physical and cognitive abilities. Holly and I agreed when were walking out that answer was better than what we get from the doctor. But looking back - she gave the same answer (we can't help you) with a different delivery. I think there is a life lesson in here somewhere. I personally am a man of few words, being short and direct with others. This experience has taught me that although these means are functional and efficient, they are not the best. Adding words of hope, compassion, and encouragement go a long way when addressing difficult issues. Some of my readers face the similar challenges as I do. I can feel your pain, things will work out, and I know you can do it.
Moving backwards, my last oncologist visit was interesting. The doctor was not there, and we just met with the nurse. The nurse is much less intimidating, seems to listen better, and is a bit more compassionate. I came out swinging about my headaches, voicing my concern how their 'man up' attitude is not helpful. The doctor has this peculiar way of dismissing our concerns while maintaining his aura of duty. The nurse fielded this by putting my situation in context. She said that some brain tumor patients experience no pain at all, while others suffer debilitating headaches. In this spectrum, I am just outside the level where over the counter medications help, and not quite at the level that would warrant narcotics. More importantly, she continued, be thankful that I am not worse off as many of their patients are. She said that I am doing very well considering my condition. She reflected back and said that the last couple MRI's were stable, and she expects (with explicit warnings about predictions) that the MRI in December will be stable too sighting my continued physical and cognitive abilities. Holly and I agreed when were walking out that answer was better than what we get from the doctor. But looking back - she gave the same answer (we can't help you) with a different delivery. I think there is a life lesson in here somewhere. I personally am a man of few words, being short and direct with others. This experience has taught me that although these means are functional and efficient, they are not the best. Adding words of hope, compassion, and encouragement go a long way when addressing difficult issues. Some of my readers face the similar challenges as I do. I can feel your pain, things will work out, and I know you can do it.
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