Tuesday, June 4, 2013

Do you ever second-guess yourself?

Dwight and I had a very busy day today. We got up early and headed over to the Cancer Center where I had to have blood work done before I could have the scheduled PET Scan. My first question of the day is, "why in the world they keep it so COLD"? We were so glad we made the appointment for very early because evidently several of the machines broke and people were waiting for hours and then being re-scheduled. We finally got to leave and come home for a short break before going back to meet with my Lymphoma Oncologist and to get the results of the Scan. We had to wait for awhile to see the doctor. Because of the mess with the machines, my doctor spent an hour trying to get the results so we could discuss them. I was pretty whipped by the time she came in. We both like her a lot. I told her that Dr. Hathorn speaks very highly of her and I let her know I was still seeing both of them. She thought that was cool. She said two of the places from before are now gone and there are several new ones and some of the older ones have grown a little but nothing that requires any "action" (which means - treatment). I'm glad Dr. Hathorn had already explained Follicular Lymphoma when I was first diagnosed so that I don't panic over new ones showing up. She did see a little spot on the scan she wanted to check. It is on my back and very, very tiny but she showed it to Dwight and wants him to keep an eye on it. She took her pen and made a tiny little dot on the paper, showed it to me and said, "this is what it looks like". Made me feel good that she knows what she is looking at on the scans. They will schedule me another scan in 6 months so I feel pretty confident she is staying on top of it. When she was going over my medications and I told her I was trying to wean myself off the oxycodone; she asked me why. I told her I want to be off narcotics, blah, blah, blah. She looked at me with a "and how is that working out for you" look. I laughed and told her I had to admit that it has been a lot harder than I had anticipated. She looked at me and said, you really don't look good and it is obvious you are in severe pain right now. Then she had a long talk with me about the fact that my pain is real pain and that it is because I'm a cancer patient. That between the aggressive cancer, aggressive surgery and aggressive radiation, I have serious pain. She explained how the treatments can destroy certain elements that don't ever come back and that can result a chronic pain that may never get better. NOT WHAT I WANTED TO HEAR AT ALL!!! She was very kind to me but very honest. She told me there are millions of cancer patients who have to live on pain medication or they will have no quality of life at all. I told her I had to be honest and that in the past two days, I had started second-guessing myself because of how bad I have felt. That I had hoped to control the pain with bio-feedback but haven't been able to get in front of it. She told me that she wasn't telling me not to get off the medication because she could tell I very strongly want to be free of it. She encouraged me to maybe wean myself off a little slower. Overall, it was a very good visit. Oh, and I told her I was trying to wean myself off the amitriptyline and how I was doing it and she said fine. Guess what? I started burning today so I may be "second-guessing" that decision also. Oh well......I'll think about it tomorrow.... because....after all..........tomorrow is another day!


  1. glad you feel good about the appt. and the Doctor. Sorry you feel so bad.

  2. Glad to know her opinion, and that she was understanding of your pain. In the end, every dr will have their own opinion about what meds you should be on and how long. But it all comes down to you. Nobody knows the pain you are in, except you (and Jehovah of course!). Nobody knows what level of pain killers you need, except you. And only you know how you feel on pain meds and how you want to not feel. So given all of the advice from your array of drs, hopefully you'll be able to make an educated guess as to what will work for you and how quickly/slowly you need to get off of them. Glad to know there are dr's on both ends of the spectrum to give support/advice either way you chose to go. Wish the lady on the "no meds" side were more supportive and kind. I hate that anyone has to live with pain. And that little dot on your back had better behave itself! Love you :)


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