Monday, July 27, 2009
Hi VP's...Time for another update. The most important thing to report is that the feeding tube is still holding in the correct position so we can get meds and formula into Chemo-sabe. Thanks the heavens!! We're almost at the correct calorie intake per day. Because of naps, and appointments, we've seemed to be one can sigh of our goal each day, but I think we'll make it today. You're probably asking...has poor Chemo-sabe lost weight? The answer is yes, but not at an alarming rate. We've seemed to have lost the most ground in that area while we struggled with this tube. Please tube...keep working!!!
We're at a milestone with today's radiation treatment...only 10 more days of treatments left!!! Yep! We can see the light at the end of the tunnel. We have 2 issues that we are working to minimize...The biggest is the pain. She describes the pain in her throat like swallowing broken glass. Add to that a dry, constructed throat, and you have a big painful problem. We upped her pain medication last Friday to a pain patch and after discussing this issues with Mary, Dr. Hong's PA...we're going to up it again tonight. This will only get worse as we work through these next 2 weeks so it's important to keep the pain managed. Mary is also going to try to get us into the pain clinic as soon as possible to help us manage this.
The other issue are the radiation burns on Chemo-sabe's neck...they are now starting to blister and weep and itch like crazy. This afternoon we got some gel strips that are used to soothe these burns on radiation patients. They are somewhat soothing to her, but the itch is still maddening. I think I'll get some aloe and work with that as well. You have to be careful what you use these on the burns. These next several weeks will be tricky. Even after the radiation treatments end, the radiation is still working so we probably will have to deal with these symptoms for about a month. The proper amount of pain meds are critical to keeping her comfortable. This radiation stiff is definitely the hardest part of the road to the CURE.
Brenda doesn't sleep well at night at all because she can't breathe well and her mouth dries out so quickly. Consequently she sleeps lots during the day...that's OK...it makes the time go fast. I'm being very careful NOT to overdose her on the pain meds so I'm watching her like a hawk. My motto...let her sleep!!
We saw Mary this afternoon...Dr. Hong is on a Disney Cruise with his grand kids, but will be back next week. I think I told you this but next Tuesday we start DOUBLE radiation treatments each day for 4 days. Dr. Schwartz said these were booster radiation treatments to the lower lymph nodes in Bren's lower neck and collar bone area. That heaven it's only 4 treatments and he said that these would not add more misery to the equation. The good news is that Mary said they would not do chemo while she was having these double treatments. The question remains...will she have to go through another round of chemo when the radiation is over?
We also asked about what would come next and when they would scan. Of course this is all up to the main man, Dr. Hong, but we think that they will tell us to take Brenda home to heal after the radiation and/or chemo is over and to come back in 6 to 8 weeks for the scans. The reason they do that is because all the tissue around the tumor sites are so inflamed that they just wouldn't get good scans on any remaining cancer cells until all that calmed down. That made perfect sense to us. Right now I'm thinking that we'll have to stay here for about 2 weeks when all the treatments are over so we can be close to MD Anderson who will help us manage the side effects until things begin to calm down and she's strong enough to fly home...she's pretty weak right now. You know, if our angels continue to remain with us we might be able to be home by the end of August...now that's MUSIC to our ears!!! The light is getting brighter.
I thought I'd send you a picture of our kitchen pharmacy...most of these are for poor Chemo-sabe. I've got quite the system worked out and yes!!! I have more CHARTS! The red machine in the middle is my wonderful Kuerig Coffee Maker...that's MY drug! Ha! The second picture is our girl just trying to get through the day...closer to the end and the CURE. I'm not trying to strangle her...the white gauze is to keep the cooling gel packs on her neck. It is what it is! BUT we're closer to the end then we were yesterday! Thank the Lord!
So there ya have it VP's...the food is dripping and "Garbage Girl" is trying to eat up the food in the freezer, frig, and the cupboards so we don't waste stuff. Thank heaven I'm not a picky eater. Please continue your contact, prayers, and good thoughts as we work through these last hard days. You all really make a difference.
Hugs to you all from Houston Central...
Nurse Dee and a very burned and pain filled Chemo-sabe