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.

6 comments:

  1. I love your assessment of your nurse. Compassion really makes the big difference.

    I too have been experiencing headaches lately, but I don't think they are bad enough for heavy drugs. I've been taking Excedrin Migraine and it occasionally does the trick. My dentist things I grind my teeth in my sleep and is recommending a night guard to do the trick.

    How long will you be on Temodar?

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  2. Liz - I was on chemo every 5 days/week for the 6 weeks of radiation, then 5 days/month for 12 months ending in March. So its like 18 months.

    Mouth guard? Ask to see one first. I was suckered into this $650 chunk of plastic that was soo huge I could not sleep with it in my mouth.

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  3. I totally agree. Compassion and empathy make a big difference in helping a patient cope with a difficult diagnosis. It seems that the oncology profession doesn't have too many health care professionals that have that capability. Seeing how well you are doing gives all the BT patients out here hope that things will get better. The night guards are much smaller now. I had one that fit on top of all my upper teeth but could not wear it either. Now I have one that just fits on my front 4 teeth and it is very easy to get use to.

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  4. i think there should be alot more compassion and understanding in many areas of life. i hope your last cycles of chemo go smoothly. you are always in my thoughts and prayers!
    love you man - matt

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  5. Sorry that you are still getting no help with the headaches. Although this time it was at least delivered with more compassion.

    3 more cycles to go is huge.

    When you get chance, would you be able so explain to me how you prepare before your 5 days on. I won't be starting again until after my post radiation MRI January but I need to start thinking about it.

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  6. You have always been able to work through challenging situations with success, keep your positive mental attitude and an open mind. I love you. xo- H

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