Nov 21, 2013 - 2:14 am
I read my last post from the hospital when I was on Percocet and it was embarassing. I will try not to write when under the influence of narcotics. I was released from the hospital Wed. am so I went to my XRT treatment and was seen by my radiation oncologist afterwards. She examined my mouth thoroughly and said "you are hyper reactive". So after only 8 treatments she is revising my plan and dose and wants me to try and heal before restarting tx. next Monday. Within an hour after my rads, my mouth was on fire and I could barely talk or open my jaw. The mouth sores are white blobs on both sides of my tongue. Had to take phenergan and percocet to make the ride home bearable. She said I am an "outlier" and she has not seen anyone react this strongly this quickly. Glad she is revising the plan as this one is too toxic for me apparently.
I was given a card to carry around from the hospital anesthesiologist which says I am a "difficult intubation" that my pharynx is friable and what would work. This is another new wrinkle.
The feeding tube installation was a fiasco, I am now left with a very sore belly and three holes that have to heal. Of course the surgeon wanted to put me under again today and do another lap procedure, but I declined. We discussed options and I may consider another try in 2 weeks when the stomach/abdomen has had time to heal and go with an interventional radiologist placing a tube via nasal scope into the area the surgeon has already cut once. They would use a local anesthesia and light iv sedation for that. I guess the only good news is that the stomach would already be stitched up to my abdominal wall so that step would be eliminated. To be honest, I do not have much faith in the Docs who are involved with feeding tubes at this point and I think they really fumbled this one! I told my surgeon that this was a sign that I should not have a tube! LOL
Have figured out the hard way that Duke's Magic Mouthwash (called in my R/O RN ) is ineffective and only has 30 ml of Lidocaine, whereas the script my PCP wrote is a 1:1 ratio of lidocaine 100 ml., maalox, and benedryl. Had to educate the R/O RN about the difference and now we got the formula that works corrected. Had used the Duke formula while in the hospital and got no relief from it at all.
Pretty much on liguid diet now due to mouth sores and tried the Boost VHC at the hospital and found it to be tolerable when thinned out with ice and water. Also tried some Muscle Milk today, but it seemed to set off the tongue sores more even with a straw to bypass them. I drank it anyway.
Am up late due to the pain waking me up, but after swishing Magic Mouthwash and taking pain meds, able to collect thoughts. So the XRT and attempted gastrostomy tube feed placements have kicked my butt, but I will keep trying to get through this. Thank all of you for your encouraging words and "the skies are not cloudy all day"...